Journal History

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Friday, July 29, 2005 11:15 AM

I thought it was time for an update. Amanda is doing very well. We just returned from a vacation out west; visiting Las Vegas, the Grand Canyon, and Sedona (Arizona) camping. The kids got along rather well, better than I expected, and it was a vacation we will always remember.

Upcoming appointments for Amanda include neuropsych testing, which includes a four hour testing session. She also has an endocrinology appointment because her Cortisol level is low and her B-12 is also on the low side. Her next oncology appointment is August 9th. A podiatry appointment is also pending for a possible bunion on her right foot.

Kyle and Amanda attended Camp Dost the second week in July and had a great time. Amanda met new friends and enjoyed seeing those she has met before. She also participated in a work camp that was held in Mifflinburg this year.

Band camp is this coming week. She will be playing in “the pit” this year for the marching season; field competition and football games. Hopefully next year she will be able to play her Clarinet. The private lessons have helped, but she still needs to practice more at this.

It has been a busy summer. Soon she will be an official 9th grader!!

Monday, May 2, 2005 8:53 PM

It does not seem that long ago that I was reminiscing about Amanda’s two year anniversary of her being diagnosed. Now here we are almost at the three year mark. Mother’s Day weekend will probably always be bitter sweet for me. Perhaps there will be that year when I won’t remember how our lives were changed on that weekend???

Amanda is doing well. Her port removal surgery on Friday went fine. She took off the outer bandage today. It is still covered by another strip of gauze, but smaller. That will fall off with time. The stitches are the dissolvable ones as well. It is still sore for her. She is worried about someone bumping it at school.

Presently she is at her first marching band practice of the season. She will be learning marching techniques for future parades. She was excited to go tonight…doing “normal” kid stuff sure sounds exciting to me.

Although the updates will be fewer and fewer, thanks for continuing to check up on her.

Thursday, March 24, 2005 12:45 PM

Amanda had a clinic appointment yesterday. Her CBC remains in the normal range. Her ferritin, however, did go up. She is battling a cold right now, which is probably why the ferritin was elevated. Despite the elevation, they have decided to discontinue the IV Desferal. This is very, very good news for us.

She also met with a new surgeon. Her med-a-port will be coming out on April 29th. We wanted a Friday so that she would not miss much school; having the weekend to heal. This is the soonest it could be scheduled. Her next clinic visit is April 20th.

Amanda is doing well, except for that darn cough again. Thanks for checking in.

Tuesday, February 8, 2005 2:50 PM

WBC 4.9
HBG 12.5
PLAT 179
NORMAL - NORMAL - NORMAL!!!!
She has a perfectly normal CBC!!! Everything is within the normal range. YEAH!!!! This is the first "normal" CBC since May of 2002.

Her ferritin is down to 1100. This needs to be below 1000 for her to stop her IV treatments. The clinic has already put in a referral to see a surgeon to schedule an appointment to have her port taken out. This will probably take a few months, but this is good news as well!!! When her port comes out, it will feel more like she is truly off treatment and done with everything for good.

We found private clarinet lessons for her at Susquehanna University. She is not really sure if she will be able to "march" in marching band, but we are encouraging her. Band camp is in August. She has plenty of time to prepare for this. We know this is something she would be doing prediagnosis and are praying that it will all work out.

Thanks for continuing to check in on Amanda. We appreciate your support.

Wednesday, January 12, 2005 8:00 PM

WBC 3.95
HBG 13.4
PLAT 206
ANC 2290
Ferritin 1300

She just squeaked by with not hitting a normal WBC. Seeing her hemoglobin and platelets come more within the normal range is great. Her ferritin is slowly coming down…. not fast enough for her though. I had trouble accessing her port the other night. I’ll be glad when these treatments are done as well.

She had her normal monthly clinic visit and her breathing treatment today. She also saw a doctor regarding her chronic cough. Her cough is much better than what it used to be (it took more than three months for her to be seen), but it is still there. It is more of a nuisance than anything; worse in the morning and at night. She also has trouble when exercising where she just coughs and coughs. A PFT was done and was relatively normal. He reviewed her CT scan of her sinuses done back in March, 2004, when she was diagnosed with pansinusitis. There was also some sort of blockage noted on the CT scan. He said this could be what is causing the coughing. It could also be due to asthma or a reflux problem. To start out with, she was given two inhalers. If they don’t work, more testing will need to be done.

We delivered some goodies to Children’s Hospital today as a late Christmas gift. It was good to see the nurses. Amanda had a chance to harass Dr. Taylor as well. We were also introduced to a family of a 3 or 4 year old little girl. She was just newly diagnosed with leukemia. It just breaks my heart to hear news like this.

Amanda is excited to be participating in the World Vision 30-hour fast again this year. If you would like to sponsor her, please let us know. She would like to reach the goal of $360, which would be enough money to feed one person for an entire year. She is also trying hard to play “catch up” on her Clarinet. Because she missed so much school, she is really behind her classmates on knowing how to play. She would like to take private lessons and we think that sounds like a good idea for now. If anyone knows of someone in the Mifflinburg area who gives lessons, please let us know. Thanks!!

Tuesday, December 21, 2004 8:30 AM

HAPPY HOILDAYS!!!

Not much new to report, but wanted to wish everyone a very special Christmas. Kyle performed last night in the High School Holiday Concert. It was just lovely. The boys were in black tails and the girls in black gowns. They do such a wonderful job.

Amanda is staying after school to bake Christmas cookies as a Builder's Club project today. Jen is home from school today with a cold.

I'm getting ready for 20 people around the Galer's Christmas table this year. It will be a full house, but we are all looking forward to it.

I also just heard that a boy on the ALL-kids parent support group list has relapsed. He went off treatment in January. His name is Matthew and he is 12. It is always so very difficult to hear that a child has relapsed. Please pray for Matthew and his family, they really need prayer right now.

Wednesday, December 15, 2004 1:15 PM

Saturday, December 18, 2004
Just thought I would let you know that Amanda is feeling better. Her infusion on Thursday night went well. She went to school on Thursday and Friday and is feeling better about things.

Wednesday, December 15, 2004
Her ferritin from yesterday is 1430. We are very thankful it is continuing to lower.

I'm not sure what I really want to say with this update. I'm rather upset with Dr. Miller right now. When I called the clinic for her ferritin results, I asked about scheduling her phlebotomy for next month (see yesterday's journal entry). Now I'm told that phlebotomy won't be scheduled, but that she should continue with the IV Desferal...what the heck!!! Just yesterday everything was fine. Amanda was so happy that she did not need this anymore, now I have to tell her she does???? And, that she should continue with her breathing treatments as well...urgh!!!

She is very upset with the news, in tears about it. She mentioned yesterday that not having the Desferal was a special Christmas gift for her. She was just so happy about it. Now, to her, it seems like nothing ever goes right. I'm having a difficult time explaining to her why they changed their minds, when I really don't understand it myself.

If any of her friends are reading this, please give her a call or stop by for a visit. She could use some cheering up. Thanks!!

Tuesday, December 14, 2004 6:30 PM

WBC 3.20
HBG 12.8
PLAT 177
ANC 1410
FERRITIN (Pending)

HAPPY HOLIDAYS!!!!

Amanda saw the new pediatric hem/onc doctor today, Dr. Miller. Dr. Miller is a female doctor. We have met her once, but never had her as Amanda’s “official” doctor of the day. Dr. Miller is now Amanda’s favorite doctor. She had nothing but good news for us today.

First off, she says that because the ferritin is continuing to come down (even though we don’t have official results yet) and her hemoglobin has been stable, she can stop the IV Desferal infusions. She will need to have what they are calling “phlebotomy” once a month instead, but the weekly infusions are now discontinued. The phlebotomy is just like donating a unit of blood. This will take place at her monthly visits.

Secondly, Dr. Miller said it was no longer necessary for the monthly breathing treatments. Amanda tolerates these treatments fine, but they are no fun and she definitely won’t miss them either.

She also saw her GI doctor, Dr. Cochran. He sees no reason why she needs to continue to see him every three months. She was discharged from his service unless she needs him again…..yeah!!!

She has had some type of stomach bug twice, during the last two weeks; but other than that she is doing well. She participated in the Middle School Holiday Concert, both with singing and playing her clarinet. She is participating in our church’s Christmas program this Sunday. She is constantly humming or whistling around the house (yes, sometimes to the annoyance of a family member). She is enjoying life off treatment!!!

Wishing you and your family a Merry Christmas and Happy, Healthy New Year!!!

Wednesday, November 17, 2004 2:15 PM

Amanda had a clinic visit yesterday. Everything went fine. Her counts are looking good. Her white count is the only count we are waiting for to be in the "normal" range; that and her ferritin which is down to 1782. She will continue with the weekly IV Desferal infusions at home. It sometimes takes up to six months until the white count will stabilize and remain in the normal range. This is also why she needs to continue with her monthly breathing treatments until six months off treatment.

She ended up with another stomach ache yesterday, continuing this morning. She did go to school around 11:30 though. She missed two days last week because of tummy problems too.

We are planning on heading south over Thanksgiving in the camper. We are looking forward to getting away. Dave's parents are coming along too, so it should be an extra special family vacation. Thanks for checking in.

HAPPY THANKSGIVING!!!

Friday, October 29, 2004 2:30 PM

*** CHECK OUT NEW PHOTOS ***

Amanda is enjoying life without chemo. She seems to have more energy, although some days are still tiring for her. She is having trouble with a few other medical issues; but to be honest, I just don't want to discuss them right now, as we are focusing on the positive.

She is back to school on a regular basis. She recently marched in the Middle School Marching band along with the high school in the halloween parade. She wore a red wig and a poodle skirt. It seemed so odd seeing her with hair; the hair was actually close to her own hair color. We are seeing more smiles and making less trips to Geisinger. Wow, quite a change. This is something we can definitely get used to!!!

Her labs from two weeks ago were good. Her ferritin level came down in the 2000 range. She continues to have some trouble with the Desferal. They are talking about having her "give" a pint of blood because her hemoglobin has been stable. This is actually the preferred treatment over the Desferal, but because of the chemo she was unable to do it this way.

Her next appointment is November 16th. I won't be updating as much anymore. Just keep in mind that no news is always good news.

Monday, September 27, 2004 3:35 PM

ZERO DAYS OF CHEMO LEFT!!!!

The “surprise” roller skating, no more chemo celebration was wonderful. Amanda was excited to see all of her family and friends there…..the people who have supported her and prayed for her for such a long time. God’s grace was shining down on that rink last night. We want to thank each and every one of you for coming last night. It meant so much to all of us and we hope everyone had a great time; Amanda certainly did.

I made a poster of pictures of her during the past two plus years. They included pictures of her crying over her first hair cut knowing her hair would fall out, her playing in the snow with an “NG” tube in her nose, her 12th birthday spent in the hospital, her skinny body, pale skin, and bald head. She had 15 admissions, 60 nights in the hospital, 54 blood product transfusions, three surgeries, 12 days of radiation, 15 spinal taps, and five bone marrow aspirations. She had too many needles, tests, procedures, and medicines to count. She missed too many days of school to count. She survived chemo induced seizures. It is that night, the night she had those seizures, that I truly believe that God wanted her to continue living here on this earth.

Last night at 10:00 PM she took her last chemo pills. It was nothing special really. It was like any other night has been since she started maintenance therapy in July, 2003. I snapped a few pictures and then she fell asleep. Of course, this old mom had to shed a few tears, but off to dreamland Amanda went.

Today has not been the best of days for her. She tried going to school, but had to come home because she was not feeling the best. She continues to show the battle wounds of battling leukemia for such a long time. She will continue with her Desferal infusions as well. The needles and pain are not over for her, but we do feel the battle has been won!!! Praise be to God!!!

Monday, September 20, 2004 3:35 PM

WBC 2.64
HBG 10.8
PLAT 248
ANC 2138

~~~8 DAYS OF CHEMO LEFT~~~

As I type the above words, I am filled with many different emotions. You think the day will not come soon enough for her not to be on chemo. Now that it is almost here, I'm a nervous wreck one minute and just purely overjoyed the next. The security "chemo blanket" is now going to be taken away. We can only pray that it has done its job. Having her make it this far without a relapse is a definite milestone. However, most relapses that happen off treatment happen that first year.

I had a long discussion with her nurse practitioner today. Her off treatment schedule for the first year is monthly visits for a count check and to just see how she is doing. As long as her counts are good, no other bone marrow aspiration or spinal will ever need to be done again!!! She will need to continue with her monthly breathing treatments for six months. She will need to have her thyroid levels checked yearly. She will need to have her immunizations titers checked to see if she needs reimmunized for anything. Her nurse practitioner also gave me a book on Childhood Cancer Survivors and what kind of late side effects Amanda might be facing.

Her ANC continues to be high. They increased her at home chemo to the 100 percent mark. She received her last IV push Vincristine today. She will take her last Methotrexate dose tonight, which is 11 1/2 pills. Then her nightly 6-MP until Sunday night. THEN...NO MORE CHEMO!!!!!

*****ROLLER SKATING PARTY THIS SUNDAY AT 4:30*****
Please plan on coming. If you have not called to let us know, that is okay. Please, just come as we are celebrating Amanda making it through her chemo and also thanking you all for your prayers and support.

HOPE TO SEE YOU SUNDAY!!!

Tuesday, September 14, 2004 11:30 AM

~~~13 DAYS OF CHEMO LEFT~~~

WBC 2.50
HBG 11.0
PLAT 208
ANC 1909
Ferritin 3000

Her ANC is up so she is back to the 75 percent dose of her at home chemo. Last week she missed some school because of not feeling well. However, by Friday afternoon she was better and did manage to go for half a day.

The clinic had a surprise "no more chemo" celebration for her with cake and a gift. Although technically she goes back Monday again for her final Vincristine, they thought they would celebrate a little early. It was a huge cake. She shared with all the nurses, doctors, secretaries, receptionists. Since there was still half a cake left, she thought it would be a good idea to walk over to Children's 3 and share the rest. It was good to see those friendly nurse faces. They appreciated the mid afternoon snack too. We were also told that they recently had 8 new leukemia patients diagnosed. My heart just breaks when I hear about another child dx with cancer.

Amanda also saw her GI doctor yesterday. When she is off treatment we are going to try and stop some of her other medications as well. He agreed with this. We also got his opinion on her ferritin. He thinks it would be best to ger her levels under 1000. Her oncologist thinks just hitting the 1000 should be the goal. (Normal is up to 150) Since it has come up again, I suppose we just won't worry about that yet. She also had some stool studies done because of some recurrent diarrhea.

Her roller skating no more chemo party is Sept. 26th. As of now, not too many people have responded that they are coming. I hope the lack of interest is not too disappointing to her.

Thanks for your continued support and prayers.

Tuesday, September 7, 2004 5:15 PM

ATTENTION PRAYER WARRIORS...

Please add two special kids to your prayer lists:

~Thomas~
He is currently in the Children’s Hospital of Philadelphia. He recently had a transplant for ALL. He has severe blistering of his skin on over 90 percent of his body because of graft vs. host disease.
http://www3.caringbridge.org/nj/thomaspeterpaul

~ Kevin~
He is on a relapse protocol for ALL. He is currently in the PICU.
http://www3.caringbridge.org/va/kevin/

On the home front...

~~~20 MORE DAYS OF CHEMO LEFT~~~

WBC
HBG 10.8
PLAT 312 (wow!!)
ANC 627

Her ANC is just a tad on the low side, so her at home chemo is back down to 50 percent. She sure is playing the yo-yo game with her chemo again. She will need to have her counts checked again next week. Hopefully she can resume at the 75 percent.

Amanda has been doing well. She had a sleep over on Friday night with five other girls in celebration of her 14th birthday, which is officially Sept. 9th. On Saturday, her father (along with a friend), took all six girls to the PSU football game. The girls all had a wonderful time. We are having a little celebration for her on Thursday as well; a nice quiet one with just family. I just can’t believe she is going to be 14.

We are all getting excited for her upcoming “No more chemo” roller skating party. Most of the invitations are out by now. There was a write up in our church newsletter about it as well, for all our church family friends. Please don’t forget to just give us a call so we have an estimate of the number of people who will be attending. We are hoping for a good turn out. THANKS!!!

Monday, August 30, 2004 2:00 PM

~~~28 DAYS OF CHEMOTHERAPY LEFT~~~

The kids are presently enjoying their first day of school. I did manage to get them lined up for a "first day of school picture", even though Kyle was not real happy about it.

Last week I had some problems accessing Amanda's port for her Desferal infusion. (I tried to access her on Monday and again on Thursday with no luck.) We ended up going over to Geisinger on Friday for the nurse there to do it. The first nurse, who has much experience doing this, could not even get it. Her port site was very sore and bruised because of all the needles going into it. It looks like she will be needing a bigger/longer needle that looks huge to me. The nurses are not sure if home health will be able to access her either. She has a really "tricky" port. She has alot of scar tissue, which does not help matters. It looks like we will need to go over weekly for the clinic nurses to access her. I'm not sure if I can get the courage to try it again at home myself. (She had some pain when I tried to do it on Thursday. It is one thing to see a nurse access her and cause her pain, but totally different for me to be the actual one causing the pain. This ole' mom is not sure if she is up to the task.) Right now they are not suggesting that I try it again. However, I am really not looking forward to weekly visits, especially when she goes off treatment 9/26.

She does have an appointment Wednesday with her surgeon as a followup on her gallbladder surgery. So it works out well that she can also be accessed that day while we are at Geisinger anyway. The next week (9/7) she has a count check and will remain accessed for an infusion that night.

As her off treatment date gets closer, I am having mixed emotions. There is always the fear that when the chemo is taken away that she might relapse. Of course, we have lived with the relapse fear since diagnosis, but the fear just never seems to go away. I need to work on letting God take the "burden of fear" from me. And, of course, there is also the JOY that she will not be taking anymore toxic chemotherapy. This is what I need to keep my mind focused on...the JOY!!!

Blessings,
Lori

Monday, August 23, 2004 2:45 PM

~~~35 DAYS LEFT OF CHEMOTHERAPY~~~

WBC 3.28
HBG 11.8
PLAT 189
ANC 2329

The official countdown has begun!!!

Her "last" spinal tap today went okay. She needed to be poked twice, so she will probably be having some back pain by tomorrow. I certainly will NOT miss watching this procedure. It is not as bad a watching a bone marrow aspiration, but still it is something I hope my mind soon forgets.

She has been feeling better. Her abdominal area is still bruised, but does not hurt much at all anymore. She is still battling the cough, but it is not too bad.

I did access her port on Thursday for her Desferal infusion and had no problems...whew!! I did forget to ask them to check a Ferritin level today. So, will have to wait until next month for an exact number on where that is. It will probably take longer to come down since she is now only getting one dose a week versus the five doses a week.

We had an enjoyable weekend camping at Round Top Campground in Gettysburg. Kyle has wanted to visit Gettysburg all summer. We thought we better get it in now because school is just around the corner. The kids actually got along pretty well for a change.

Her at home chemo was increased because her ANC and white count are on the high side. Yes, this is making me nervous because I'm afraid of a crash within the next few weeks. Her counts typically crash with anything above 75 percent. Soon our lives won't be run around counts and chemo at home. I certainly want her to get all the chemo she can before going off treatment, to make sure any hiding leukemic cells are destroyed.

Next appointment is in two weeks. Thanks again for checking in and for your continued prayers.

Friday, August 13, 2004 1:45 PM

WBC 2.64
HBG 10.9
PLAT 147
ANC 1557

Amanda had a clinc visit today because on Monday two docs are away. Her counts look good. She will now increase her at home chemo to the 75 percent dose.

Her port was accessed and the IV Desferal started. This will now be given weekly over a ten hour infusion. Next Thursday I will have the honor (not) of accessing her port. Yes, I am nervous about it. If I don't use the proper sterile technique, she could end up with an infection. If I don't have her wiggly port secured properly, I will miss it and have to repoke her. I have seen this done over 100 times, but it is always different to be the actual one "poking" her.

Her incisions are looking okay. She is still really black and blue and one site is still bleeding a little. She sort of had a melt down on Tuesday after she came home from the hospital and the morphine wore off, saying she needed stronger pain pills. At that point she was getting the strongest she was allowed to at home. Our only instructions was that if the pain continued, she would need to be readmitted. She managed to settle down and is tolerating the pain now.

Her next visit is August 23rd. This will be her LAST spinal tap!!!! It was actually moved up a week because school starts on the 30th. We are hoping and praying for a noninterupted school year for her. When she goes off treatment September 26th, she will only need to be seen once a month. We are looking forward to seeing her have more and more energy when all the chemo is finally stopped.

Thanks for checking in. Enjoy your weekend.

Monday, August 9, 2004 4:30 PM

Amanda's surgery went well. The only slight complication was some leaking bile, but otherwise it went well. She is in slight pain, but up walking around and even eating already. She was admitted for observation. Her surgeon just came in and said she is looking really good. She will be coming home tomorrow.

Thanks for all your prayers.

Monday, August 2, 2004 12:58 AM CDT

ANC 1048
Ferritin 2200

Amanda has been feeling better. Her cough is still present, but not as bad as it was. Surgery for her gallbladder to be removed is Monday, August 9th. We will be notified the day before when she needs to be there. Please pray that everything goes smoothly. It is not a “big” surgery, but still surgery with risks. She will be admitted for one night. In the past, she has tolerated the anesthesia well with no vomiting or ill effects afterwards.

Dr. Ramdas is also considering having another liver biopsy to check on the condition of the liver. Dr. Cochran, her GI doc, is on vacation. They are not sure if they will be able to have another GI doc do it or not. We will know by the end of the week if this will happen or not.

We arrived at the clinic around 8:00 this morning. Her port was accessed and blood drawn. She then had her breathing treatment. Then back up to the clinic for her chemo. On the way back to the clinic after her breathing treatment, she complained that the needle in her port hurt, so we walked back slowly. When the nursed flushed her line with saline just before administering the chemo, it stung. As it turns out, somehow the needle came out of the port, but was still in the tissue. Anyway, the nurse had to stick her again with a bigger needle. She handled it very well.

We had a discussion regarding her Desferal treatments. They continue to be giving her problems. She only had two out of five treatments last week. She needs to be stuck more than once per night because of a reaction with the first stick, then sometimes again with the second. She has three doses left to use up before supplies come again. For now the plan is to try and get the next three doses in and then wait until after her surgery. At that point, they are suggesting we try an IV version. This is riskier, because her port needs accessed (which I will have to learn to do) and there is more of a chance of her line getting an infection. At this point, we feel this is our only alternative.

She is to resume her at home chemo at the 50 percent dosage again. This week is a steroid pulse week, so her white count should be good for surgery on Monday.

*******************************************************************
SSHHHH!!! It’s a surprise. I thought I would announce this so everyone can mark their calendars. We are trying to arrange for a “SURPRISE” roller skating party. This is to take place on September 26 at Sunset Roller Rink. This date marks her last day of chemo!!! She knows there is a skating party, but thinks it is in October. We are inviting everyone who has supported us through this journey in Amanda’s life. Please try and attend. It will mean a lot to her and to us too.

*******************************************************************

Thanks again for checking in. Please leave a message in her guestbook so we know who stopped by.

Monday, July 26, 2004 4:05 PM

WBC 2.52
HBG 12.0
PLAT 265
ANC 1814

We ended up over at the clinic on Thursday because Amanda was running a fever. We are thankful that she had a white count, otherwise it would have meant an admission. Blood cultures were taken and IV antibiotics were given. Something else "gram positive" grew from cultures earlier in the week. A chest x-ray was done and came back clear. All at home chemo was to be stopped.

We decided to head to Lancaster as planned for some camping time. This was a tough decision, because any fever and Amanda needed to head back over to Geisinger. Thankfully, she had no fevers all weekend and continues to be feverless (is that even a word?)

We had a very relaxing weekend. We camped at a place outside of Lancaster called Circle M. There was a site available right down by the Conestoga River. It was rather mucky looking, however, because of all the recent rain. Kyle put up a tent, which he and Jen slept in both nights. We did go shopping in Lancaster, played mini golf, and swam. We just ran out of time to do everything we wanted to. Dave managed to play the par 3 golf course. Nobody else was really interested, maybe next time.

She continues with the cough. They changed her antibiotics. Her gallbladder surgery was originally scheduled for this coming Thursday. Dr. Taylor did not think it would be a good idea because of how her cough is still sounding. Looks like it will probably be next week, but I don't have a definite date as of yet.

Next Monday she is due for IV chemo and her breathing treatment. Hopefully by then her cough will be gone and she will have more energy. She is sleeping about 13 - 14 hours a day and sometimes even takes a nap. However, these are not all sleeping hours, as she is up coughing frequently. This cold she has really seems to wipe her out.

Hope everyone is enjoying their summer. It certainly is going by much too fast.

~~Don't forget to be kind to strangers, for by doing that some have entertained angels without knowing it.
Hebrews 13:2~~

Wednesday, July 21, 2004 7:04 PM

WBC 3.77
HGB 11.6
PLAT 239
ANC 2073

Amanda’s low-grade fevers subsided yesterday...phew. Her knee is better. Preliminary culture results, the ones that Dr. Taylor saw on Friday afternoon, thought it was pseudomonas. It turned out to be something else “gram negative”. We are just glad it healed up so well.

Her cold, however, is worse. She has a terrible sounding cough. Thankfully, her lungs sound clear. She is on an antibiotic. Her counts are up and chemo is resumed at the 50 percent dosage. She has some type of an ulcer inside her mouth that is sore. They cultured this today. She needs to use some yucky mouth swish and spit medicine for this.

We met with her surgeon today. She has about four or five gallstones. She has had two gallbladder ultrasounds done. He compared the two and they show that the stones are moving. This puts her at an increased risk of the stones traveling into her common bile duct which is not a good thing. Surgery is going to be scheduled for sometime next week, as long as her cough is gone by then. We don’t have a definite date yet. She will be admitted for one night. It will be done laparoscopically.

She will have her counts checked again on Monday. We are to continue monitoring her for a fever. She did have another painful reaction to the Desferal infusion Monday night. It is getting more and more difficult to find a spot to put the needle in because of sore spots everywhere. Her ferritin won’t be checked again until August 2; please pray for LOWER results.

We are taking a short weekend trip to Lancaster camping. The campground has an indoor and outdoor pool, mini golf, and a par 3 golf course (I think that is what you call it). Dave thinks it will be fun for the entire family to try out the par 3 course. I don’t think I can even hit a golf ball, so it should be very comical…for him anyway…lol. We are returning on Sunday and then have an Ilgen Reunion to attend that afternoon. Looks like another busy weekend.

Next update should be Monday. By then we should know when the surgery is scheduled. Thanks again for checking in.

Sunday, July 18, 2004 12:55 AM

Amanda had an absolutely fantastic time at Camp Dost this year. She says it was her best year yet and is already looking forward to next year. Being an official teenager moved her up with the big girls and doing fun teen stuff. One of her highlights was making a tie dyed T-shirt; it turned out great. She met some new friends as well as reunited with the old. She participated in two Polar Bear swims, which means going for a swim at 6:15 AM. Lights out for the teens is midnight. She managed to get Dr. Taylor wet and play a prank with fake blood on the nurses. She participated in skits, singing, crafts, archery, plus a whole lot more.

We are very fortunate to have a camp like Camp Dost for her. The counselors have to use their vacation time to be with the kids; it’s all volunteer. They truly love being with them. A floor nurse, Nurse Angie, was one of Amanda’s counselors this year; whom she adores. Tears were shed at the closing ceremonies. They sang songs for us and did a Power Point presentation on what fun they had that week….rain and all. Special bonds were made along with memories to last a lifetime.

Kyle had a great time too. He did admit that he will miss not being able to go next year when it is Jen’s turn.

Thursday, she noticed a pimple on her right knee that hurt a little bit. Dr. Taylor did a culture and it came back positive for pseudomonas. This is what she had back in January and she could hardly bend or put any weight on her knee because of the pain. This can only be treated with IV antibiotics which would need to start as an inpatient. Thankfully, it has not gotten worse and actually looks better today. She has been running low-grade fevers off and on and has a cold now too. She is very tired; which is probably a combination of making up the lost sleep during camp and the cold she has. I have no clue what her white count is right now. I spoke with Dr. Taylor this morning. He says as long as the knee continues to look well, it should be fine. We are to hold off on her chemo at the present time in hopes of bringing up her white count to fight off the pseudomonas.

We did get the results of her gallbladder ultrasound back. It is confirmed that she has gallstones. She will see a pediatric surgeon on Wednesday. Her counts will also be checked on Wednesday.

Thanks again for checking in!!

Wednesday, July 7, 2004 3:30 PM

Ferritin 3337

I spoke with the clinic today to get her Ferritin results. As you can see, it is up close to where it was when she was first dx with the iron overload...not very reassuring considering all the pain and discomfort she has had to endure for months since starting the Desferal. I was reassured, however, that a ferritin level can fluctuate, especially if there is an inflammatory problem brewing somewhere. Amanda has been having trouble with a chalazion on her eye for a few weeks. It is getting better, but perhaps this has something to do with the elevated ferritin. She also is not feeling the best today with a stomach ache and perhaps that caused it to elevate as well. If there is anything that I can say about having a child with cancer is to always expect the unexpected and it can always be worse. I'm not going to fret over this and am encouraging Amanda not to either. Please continue to keep her in your prayers. Thanks, Lori


Tuesday, July 6, 2004

WBC 1.12
HBG 12.5
PLAT 203
ANC 582
Ferritin (pending)

As you can tell from the above, her white count is lower than it should be. Because of this, her at home chemo is being decreased from 75 percent to 50 percent. She had an ultrasound of her gallbladder done today (results pending), her monthly breathing treatment, and IV push chemo. She continues to have some trouble tolerating the Desferal infusions for the iron overload. She misses about one or two doses out of the five she needs to get in weekly. However, she has been doing very well overall.

Her trip to West Virgina with the church was great. She painted a house of a lady who lost her vision in an accident at the age of 41. She made a definite connection with her and talks about her frequently.

Our July Fourth activities kept us busy this past weekend. Amanda has school tomorrow and Friday. The summer is flying by. On Sunday she leaves for Camp Dost. This is the camp sponsored by Geisinger for kids with cancer and a sibling. Kyle is going again this year, but next year it will be Jen's turn. Amanda has a few jokes planned for Dr. Shiny Head and the nurses.

They want her counts checked in two weeks. She has an appointment with a surgeon on July 21, so counts will be checked then.

Monday, June 21, 2004 9:14 AM

~~~NEW PHOTOS ADDED~~~

Our trip to Cedar Point went very well. Amanda went on the Dragster with Kyle. This is 410 feet straight up and then straight back down again ride. It shoots you out at 120 mph within seconds. She loved it!! Her other most favorite ride was the Mellennium Force when she was in the very front seat. This is only 310 feet high. Jen was right there in the front seat with her.

We returned on Thursday. Relay for Life was Friday. It was good to see her walking around enjoying all the different booths and mingling with everyone. (Last year she was inpatient for the event.) She enjoyed being the first one to hit the target on the dunking machine, landing her pastor in cold waters...lol.

Presently, she is in West Virginia with her brother, father, and 40 others from our church on a "mission trip". Around 400 youth with adults participate in this event. She will be helping to rebuild homes for people who can't afford to do it on their own. This is her first year doing this. Kyle and Dave have been to other "mission trips", but this is her first one.

They all have two prayer partners assigned to pray for them. (Thanks Elizabeth and Irene) This helps to ease my nerves. It is great to see her doing things that she would have been doing before Dx.

She has been feeling extremely well. Her energy level is returning, although she still tires easily. Next appointment is July 6th. I'll update then.

Monday, June 7, 2004 4:30 PM

WBC 2.12
HBG 12.7
PLAT 205
ANC 1335

Her counts are perfect!!! Gotta love it!!!

The tap today went okay. Had some trouble getting it, but not too bad. If she gets pain, it usually shows up a little later. Hopefully not this time.

Last Thursday she went to school at 11:30. She had a test to make up on the computer and then they had field day. She got her yearbook signed and had a good time seeing her friends. She is going to continue with some school during the summer. We pushed for this to happen. Its one on one with her teacher and she will be working on math that she will be having in eighth grade.

June is a busy month for us. Tuesday, Wednesday, and Thursday Amanda has confirmation camp. We decided to have her not sleep over because of her nightly infusions and also that she will just sleep better in her own bed. On Sunday we leave for Cedar Point, Ohio, in the camper. This is our third year of trying to get there. We are all excited to ride those coasters. We return on Thursday. Friday and Saturday, June 18-19, is Relay for Life. She is to hold the banner for the survivors lap. Jen is also leaving for a two night girl scout camp on the 18th. June 20 - June 26 Dave, Kyle, and Amanda are on a mission trip to West Virginia. After that, Dave leaves right away again for work for a few days. Phew...I'm tired just typing it all out.

She is to remain on 75 percent of chemo at home. They don't want to see her back for a month, which has never happened so far, but time will tell. I certainly have fears that she won't be able to go on the mission trip for what ever reason or that something will happen while she is there. Being eight hours away from her is going to be hard on her old mom, but dad will be with her.

Thanks for your continued support.

Monday, May 24, 2004 2:10 PM

Amanda's ANC is at 900 and her other counts are good too. She will remain on the 75 percent dose of her chemo at home.

Last Sunday her right eye started swelling. By Monday morning it was worse. Her family doctor saw her and diagnosed her with pink eye. She was all worried about missing her field trip on Friday to Philadelphia. By Wednesday, it was still swollen, so she was started on an antibiotic. Friday morning she was at the school at 5:40 AM ready to go. She had a great time. It was a hard decision for me NOT to go with her, but we thought it was a good idea for her to be without Mom for the day. Being around her friends again really helps to boost her spirits. Her favorite part was seeing the monkeys at the zoo. They also visited the Franklin Institue.

Saturday she had two episodes of right upper quadrant pain. The pain was rather intense. We were getting ready to go to the ER when the second attack stopped...whew! It looks like it is her gallbladder again. It has been over a month since the last attack. She is scheduled to see a surgeon on July 21.

Thanks for checking in. Her next visit is in two weeks. She will have a spinal tap that day also. Only two more spinals to go, but who's counting....WE ARE!!!!

Monday, May 10, 2004 1:10 PM

WBC 3.26
HBG 12.7
PLAT 170
ANC 1825
Ferritin 2445

Thursday she was not feeling well with a low grade fever, nausea, fatigue, and slight headache; she hardly ate anything all day. She had some sort of a reaction to the Desferal infusion on Wednesday night too....never a dull moment. The clinic wanted to see her on Friday to observe her while getting the Desferal. Everything turned out just fine. She actually felt pretty good on Friday, except for a cold again.

Sunday, she sang a solo at both church services. She has wanted to do this for so long. I was having some bad feelings about her possibly needing to be admitted Friday and then having to miss her solo, but it all worked out. She did an absolutely wonderful job. We are all so proud of her....and also remembering that two years earlier it was announced to our church family on Mother’s Day that Amanda was diagnosed with leukemia.

She was diagnosed on a Friday, two years ago today. A day I will never, ever forget. I remember so many details like it was just yesterday. First the phone call from Dr. Ronco, her family doctor, at 12:10 PM questioning leukemia. Receiving a call from Geisinger just 10 minutes after the first call saying to come right away, don’t have Amanda eat any lunch, and be prepared for an admission. I remember having to hand the phone to Dave, who just happened to be home for lunch that day, because I just could not get any words out to the person on the other end of the phone. Jen was at ballet lessons and arrangements needed to be made for someone to pick her up. Going to the school, picking Amanda up, and trying not to let her know that something serious was going on. The ride to Geisinger seemed to last forever. Arriving at the clinic and meeting the oncologist. Having a bone marrow aspiration done and then getting the “your daughter has leukemia” talk. Walking over to Children’s and pushing the button that says inpatient oncology unit on it. Trying to explain to Amanda exactly what leukemia is and what it all meant. Making phone calls to my parents and Dave’s parents. Holding all the tears in. Hearing the statistic that she has a 65 percent chance of survival. That the leukemia is also present in her central nervous system. The piles and piles of information that needed to be learned. What toxic drugs she would receive and the side effects that would happen because of them.

We were in total shock and disbelief. We are very thankful to God that she is still in remission and pray everyday that she will remain in remission forever. Fears of relapse are always in my mind, sometimes more than others. Whatever path God has in store for us, we are ready. He is the Master planner and we know he will protect our family no matter what the outcome. Praise, glory, and honor be to God our Father.

Today she had a breathing treatment, chemo through her port, and will increase her chemo at home to 75 percent. I was reassured that she will be on this dose for at least two months before increasing it at all, in hopes of not having her ANC fall again. I have my doubts as to whether or not she will be able to handle the 75 percent....time will tell. Her energy level today is good. She seems to be handling the nightly infusions a little bit better. With that said, she was also started on an antidepressant. We were really hesitant to do this, but it does seem to be helping. Next count check will be in two weeks.

Thanks for your continued prayers.
Lori

Monday, May 3, 2004 1:15 PM

WBC 4.4
HBG 12.8
PLAT 146
ANC 2714

This is what we were praying for....her counts are finally on the rise. She has been feeling well too. She will be back on chemo at 50 percent. Counts will be checked again next Monday.

Amanda is again participating in Relay for Life this year. She was asked to help hold the banner for the surviors lap. She was asked last year, but ended up inpatient. She is asking for donations. Last year I sent out a letter to family and friends. It just seems that I see more and more people asking for donations for one thing or another. I suppose I feel guilty asking for more. So, this is an informal request to donate for the event. I'm not really sure what the breakdown is as far as what percentage goes to childhood cancer. I heard less than ten percent. However, it is still a very much worthy cause. If anyone is interested in sponsoring Amanda for the Relay for Life event, please send a check to her made out to the American Cancer Society. This is tax deductible. The event is June 18th and 19th. If you need our address, please e-mail me privately. Thanks for your support.

Tuesday, April 27, 2004 11:45 AM

WBC 1.05
HBG 12.0
PLAT 142
ANC 114

Amanda was admitted yesterday. When we arrived at the clinic her temp was 102 and she had some stomach pains. The hospital was full and she was not actually admitted until 6:15. She started feeling better in the afternoon and the fever was only elevated that once. So far the cultures are all negative. She is feeling great....so great that around 10:30 last night she and another 13 year old had a water battle with the resident. Water was flying everywhere. Nurse Angie found refuge in a med supply room while nurse Holly ended up soaking wet, as well as Dr. Joe. Smiles were seen by all.

We will be coming home mid afternoon after a round of IV antibiotics. The fever left as mysteriously as it came. Any sign of a fever or pain anywhere, and she will need to be admitted again because of the low ANC.

Wednesday, April 21, 2004 10:00 AM

Amanda had an appointment yesterday with her family doctor regarding the insomnia. She has not been falling asleep until the wee morning hours of the day. She was given a medication to help out with this. Last night she thinks she went asleep around midnight (the night before was around 5:00 AM). It may take a little while for her body to get back to sleeping normally again.

The Deseral treatments are going okay. Her stomach has a rash on it, more from the adhesive that is used to keep the needle in place rather than from the infusion itself.

We managed to go camping locally over the weekend. It was a beautiful weekend. At 3:00 AM Saturday morning we, Amanda and myself, headed back home because she could not sleep and just wanted her own bed to try to get to sleep in. We then went back to camp Saturday. Saturday evening we had a special treat hearing KJ sing/play her guitar around a fire.

I think as long as we get the current sleeping issue under control that things should start getting better again. Thanks for checking in.

Wednesday, April 14, 2004 9:40 PM

My first attempt at jagging my daughter with a needle went okay. She has been kind of down lately. She does not like needing to have this done. We also found out that her gallbladder is showing some questionable areas as well. They are not saying that she has definite stones, but that the report was not normal. She is being referred to a pediatric surgeon; the appointment is pending. It will probably be over a month until she gets seen for this. Thankfully her right upper quadrant pain is still gone.

I really doubt at this point that she will be returning to school much. I discussed this with the clinic today. The school has been very good about everything. She presently has two different teachers coming to the house, each one once a week...they are both just the best teachers she could have. They know how to push her yet are very understanding with what she is dealing with right now. She is missing out on so much, especially being around her friends. I think it is starting to take a toll on her.

Monday, April 12, 2004 4:40 PM

WBC 1.17
HBG 11.6
PLAT 131
ANC 234


Amanda had some pretty intense right upper quadrant pain late Wednesday night around 11:30 PM...I was ready to take her to the ER, but she said she wanted to wait it out. It did subside. Friday she had an abdominal ultrasound done and we are waiting for that report. Her pain since, however, is completely gone!!!!

We all had a very nice Easter. Amanda sang at the sunrise service. She did not even complain once about needing to get up at 6:15 AM.

Tomorrow she will start the Desferal for the iron overload. She was not eligible for the clinical trial, as they are not using this yet on leukemia kids. A home health nurse will be coming to "show me the ropes". It really does not look that difficult. I just hope she tolerates them well.

She continues to have a diffiult time sleeping. I did ask today if she could have a prescription of some sort; as I know it will now be even more difficult for her to sleep with a needle in her abdomen. They don't recommend it. I don't like the idea of her taking anymore "drugs" then need be, but I don't like seeing her tired (and sometimes crabby) either. Her tiredness makes it hard for her to enjoy her days...and also makes it difficult for her to go to school and/or even concentrate to do her homework.


Her ANC continues to be low and chemo continues to be on Hold. She did get her scheduled IV push of Vincristine today. This does not affect her counts. This week is a Prednisone week, which will bring her white count up. Next count check is in two weeks.

Thanks for checking in :)

Monday, April 5, 2004 11:45 AM

WBC 1.36
HBG 11.6
PLAT 105
ANC 244

Amanda did not sleep well last night. She now has pain in her upper right quadrant. Her liver function studies were good from today. She may have just pulled a muscle or perhaps it is gas(?) Tylenol does seem to help somewhat. Her liver does not feel enlarged.

The offical liver biopsy results showed an iron level of 22,700. The high range of normal for this should be 1,600. Her 24 hour urine results came back good.

Her ANC is going the wrong way again. All chemo continues to be on hold.

Dr. Ramdas returned from a "National Convention". At the convention iron overload was discussed. There is an oral version of the medication available here in the U.S. However, it is not FDA approved. To get the oral version, he has to contact the pharmaceutical company and Amanda would have to enroll in a clinical trial. He will be making some calls this week to see if she is eligible to be on trial. Amanda is very excited about this, as she would need to only take a pill versus the subcutaneous transfusion. Dr. Ramdas has tried to relay to her not to get her hopes up in case she cannot be put on trial. He states that over 50,000 kids in Canada and in Europe have been on this with very good results.

She did have a good weekend. She went to the movies on Saturday with her friend Whitney. We then went to see the Mifflinburg High School Musical. Saturday night she had some abdominal pains back again also. But, all in all she had a good weekend.

She is rather tired right now and will probably be napping soon. Thanks for checking in.

P.S. - HAPPY BIRTHDAY POP-POP!!!!!

Monday, March 29, 2004 2:15 pm

WBC 1.42
HBG 11.2
PLAT 126
ANC 414

Drum roll please........no back pain, no joint pain, no headaches, no abdominal pain, no cough!!! The only complaint that she has is a sore knee. This is from falling off her bike yesterday. Having a "normal" childhood complaint actually feels pretty good. After months of her feeling rather crappy, its a breath of fresh spring air for us to see her looking and feeling so well.

After her clinic visit today, Dave took her to Connecticut for the PSU Lady Lions basketball game. She will be home very late. I was really hesitant to have her go. Dave convinced me that she deserves some special time, especially after everything she has been through recently. Her heart and soul really enjoys the games. She talks to everyone around her and smiles the entire time. It is also a special father-daughter outing as well.

Her 24 hour urine results from last week are not back yet, which means we are still unable to start the Desferal treatments. Part of me just wants to get them over with, but another part of me is happy about the delay. Side effects will range from skin irritation at the site of infusion (very common), to headaches, joint pain, low blood pressure, and more. So, we will certainly be enjoying some normalcy in our lives while she is feeling well. Keep your fingers crossed that just perhaps she will not have any side effects...that would be great.

Her ANC is on the lower side. Anything below 500 means all at home chemo needs to be stopped. We will get counts checked again next week, which should be the next update. Thanks for continuing to keep Amanda in your prayers.

HAPPY SPRING!!

Wednesday, March 24, 2004 8:00 AM

Her first dose of Desferal went okay. She did get some headaches and joint pains which could be from the Desferal or from chemo. She had to be hooked up to monitors, which made it difficult for her to sleep (along with all the beeping as well from the monitors). We managed to be home just in time for the Lady Lions basketball game last night. (GO PSU!!!) Today will be a rest day and hopefully she can get back to school.

They want her 24 hour urine results back before starting the Desferal at home to make sure her kidneys are excreting the iron. Those should be back at the end of the week. Looks like Monday will be the start. She will receive the Desferal for five days a week for ten hours a day. Most people prefer to have it infused overnight. She is not to keen on the idea of sleeping with a needle in her abdomen, so we might try it during the day to see how it goes. Please pray that she has no side effects from this. It will take months for her iron level to come down.

Her counts look good. Chemo was increased to 75 percent. We head back over to Geisinger on Monday for labs and all the supplies for her Desferal treatments.

Saturday, March 20, 2004 8:45 AM

The liver biopsy results did indeed show iron overload. The oncology clinic called Friday afternoon and wants Amanda to be admitted on Monday to start treatments for this. She will be given a drug called Desferal. While she is inpatient, it is given through her port. They will monitor her urine to make sure her kidneys are doing their job by excreting the iron. After 24 hours she can come home. She also needs to be observed inpatient just in case she has a reaction to the drug. She will have to be on the Desferal until her ferritin levels return to normal which will be "months". I will be learning about how to administer it, etc. during her inpatient stay.

Amanda still continues with the back pain, but it seems better. She managed to go to confirmation camp last night for a few hours and will be attending today as well. I really think her just getting out of the house and being around her friends helps immensely. Please sign her guestbook, as she likes to read who is checking up on her. Blessings, Lori

Wednesday, March 17, 2004 3:15 PM

3/16 Labs:
WBC 2.16
HBG 11.7
PLAT 195
ANC 1015

Amanda had her spinal tap done first yesterday (around 11:30). The NP had some trouble getting the right spot so Dr. Taylor was called in the room to help. She is starting to feel the pain from the multiple pokes this afternoon. It hurts when she stands up. She has to be bent over when she walks. Her joint pain is also starting up again from the Vincristine she received yesterday. She gets severe cramping, like charlie horse pains, in her fingers, legs, and feet.

Dr. Cochran did the liver biopsy right after her spinal tap. I was asked to leave the room for this. She was having some pain, as could be expected after the procedure. She could not eat anything until 5:00 PM, just in case there were complications. She also had to lay on her right side for 5 hours after the procedure and was not allowed to leave her bed. She was a tropper though. She was NOT hooked up to any fluids while inpatient, which was a first for her. It seemed so odd not having that IV pole hooked up....a nice change.

Dr. Cochran was pleased with how the specimens were retrieved. There was no "breakage", which he says would mean that cirrhosis is not an issue. Her liver does look "dark" on the ultrasound which would indicate the iron overload. Her ferritin is still also elevated at over 3000 (normal up to 150) also indicating iron overload. The actual biopsy results should be back on Friday. Some other tests that were done are being sent out to another lab and it will be weeks until those results are back. Dr. Cochran would be very surprised if something other than the iron overload shows up. She does not need to see him again until June.

She was started back on 50 percent of her oral chemo that she takes at home. Counts will be checked on 3/29. Her oncologists will be the ones to treat the iron overload, so hopefully we should have a definite treatment plan with her next check.

Thanks for the prayers. She really did do well during the procedure and there were no complications. Praise God!!

Wednesday, March 10, 2004 4:30 PM

WBC 1.4
HBG 11
PLAT 187
ANC 750

Wow...look at those counts!!! Its good to see everything come up....quite a jump from last weeks counts. Her ANC needs to be 1000 before starting chemo again. She had her monthly breathing treatment today as well. She is feeling very tired, presently resting up in her bed. The cough continues, but the belly pain is still gone. Our plan is to get her back to school, at least for two classes a day before the liver biopsy and spinal tap on Tuesday.

We need to be at Geisinger on Tuesday at 8:00 AM. She will have a liver ultrasound done first to mark on her body where the needle will be inserted. For the liver biopsy, she will actually be poked three times to get three different specimens. Previously I have been in the room for her spinal taps, but don't know if I will be allowed to watch the biopsy (not that I really want to watch anyway, but she does like to hold my hand during the procedure and know that I am there).

Please pray that the procedure goes smoothly and there are no complications. THANKS!!!

Friday, March 5, 2004 5:45 PM

3/4 labs:
WBC 0.40
HBG 9.4
PLAT 77
ANC 0

Amanda was discharged yesterday afternoon. We were both glad it was a shorter stay than usual. She had a CT scan of her sinuses done while inpatient and it showed sinusitis of all sinus cavities or "pansinusitis". This is probably the culprit of her ongoing cough because the sinus drainage would drip down her throat and cause her to cough. She now needs to be on Augmentin 875 mg twice a day for four weeks. These are the biggest pills I have ever seen....we are calling them the "horse" pills.

We met with Dr. Cochran this afternoon. He will be Amanda's GI doctor. The stomach pains could be related to reflux. We are going to change the time of day she takes the Prilosec and see if that helps. It may also be due to stress. We will have to see how she does with the Prilosec.

Now for her liver problem...she will be having a liver biopsy on March 16th. This is done under sedation in the clinic. She is also due for a spinal tap, so she will have both done the same day. She will then be admitted for observation overnight and will be able to come home the next day. This is necessary to confirm the diagnosis of iron overload. There is also a slight concern for what they are calling autoimmune hepatitis. We don't know all the details yet with the above two mentioned conditions until one or the other or both are confirmed.

She has been feeling relatively well, except for that darn cough. Hopefully those antibiotics will start kicking in soon and the cough will stop. Counts will be checked on Wednesday, so I'll update again then. She needs to be out of school now because of the very low white count. She is a little nervous, as can certainly be expected, about the liver biopsy. Please post well wishes for her in her guestbook. THANKS!!!

Tuesday, March 2, 2004 7:15 PM

3/3 labs:
WBC 0.30
HBG 7.2
PLAT 90
ANC 0

Amanda has been running a low-grade fever on and off since Saturday night. Her throat is also very sore and she still has that cough, plus her belly pains are back. I spoke with the clinic this morning checking to see if I should take her to Geisinger or to her family doctor. They said to bring her on over. When we arrived her temp was up to 101. Blood cultures were taken and we awaited the results of her CBC. As it turns out, she has no white count...urgh!! She was not very happy with the news that she needed to be admitted. Tears were shed of course. Antibiotics and IV fluids were started. Presently her spirits are up, just the initial news that she needed to be admitted was hard on her.

Thanks again for checking in.

Sunday, February 29, 2004 10:00 AM

Amanda did well with the 30 hour fast. (Her Pop-Pop also fasted and we are proud of them both.) About 20 middle school aged kids participated. They needed to stay in the church until after school Friday until Saturday around 6:00 PM. I did receive a call around 1:00 AM saying that she was having a lot of leg cramping and she wanted to come home. The cramps are nothing new for her, as they are a side effect of the chemo. She went back in to the church around 9:00 AM and stayed for the rest of the day. (It probably helped for her just to sleep in her own bed.) Her stomach is aching a little this morning. She is also running a low-grade fever, but has not hit that magical number where we need to check in with her doc.

For any Lady Lion PSU baskeball fans out there, she will be at the game today. She has been looking forward to this for weeks. After the game she is signed up to go to a reception with the players and hopes to speak with Kelly Mazzante.

Wednesday, February 25, 2004 4:10 PM

HBG 10
PLAT 111
ANC 711

We had to go over to Geisinger yesterday for more lab work (I knew she could not go a whole month away from that place). Some of the originial lab workup she had over a week ago showed a few more elevations in some of the tests. I won't go into the details, because the results from yesterday were GOOD!!! We are so thankful for this. She still has the elevated ferritin, but we were concerned about other liver issues as well. Its also good to see her hemoglobin and platelets rise. Because her ANC dropped below 750, her oral chemo that she takes nightly will be decreased from 80 percent to 50 percent. We are thankful, again, that she had her CBC tested sooner than they had originally wanted so her chemo was reduced and her counts did not bottom out. (hope that makes sense)

She also has been feeling better. Her abdominal pains are still there, but not nearly as bad. Her cough is still there, but not nearly as bad. She has been going to school for two classes and tomorrow is planning on doing three. This weekend is the 30 hour fast. Okay, I'm a nervous mom over this. Her body has been going through so much lately and I hope the fasting does not make it worse again. She is excited about it though. I'll try and remember to update when it is over with how she did.

Wednesday, February 18, 2004 2:00 PM

Just a quick update. Amanda's tummy pains have returned. I spoke about 20 minutes with the clinic this morning. It sounds like it could be from the nine methotrexate pills she takes on Monday nights. The stomach pains started Tuesday morning and have gotten progressively worse. We also have to keep in mind that she is presently on Prednisone as well, which also might have something to do with it.

They don't have all her blood results back from Monday yet. However, her ferritin still is elevated at over 3300. Her PT and PTT (clotting studies) are also elevated, but nothing to raise a definite red flag as of yet. She does have an appointment to see a pediatric GI specialist on March 5. It really looks like she will have to start a medication (Desferal) that is admininistered subcutaenously, or under her skin for around 12 hours a day, five times a week until her ferritin level is within normal range again. We will have to see what the GI doc says for sure about this treatment. There are clinical trials of an oral version of Desferal as well, but it looks like the subcutaenous administration has the least side effects.

We are praying that Amanda will start to feel better so that she can get to school and be around her friends again. She is getting a little depressed saying she is tired of feeling sick. We are trying our hardest to keep a positive spin on things.

Monday, February 16, 2004 2:30 PM

WBC 1.17
HBG 9.3
PLAT 104
ANC 830

*** two new pictures added to the photo album***

Amanda never did make it to school last week. Thursday night she was still with abdominal pains. I decided to call the clinic Friday morning and ask "just what is a mom to do in this situation, should GI be consulted soon?" I suppose I was getting frustated and just tired of seeing Amanda not feeling well for so long. Well, low and behold, when she woke up Friday she was feeling much better. She had a very good weekend feeling relatively well. Her stomach pains are now totally all gone. But, she still has that darn cough/cold. She does not need to have her counts checked again until March 15th. This is the first time since her maintenance started (July) that she will go an entire month with not having counts checked. We will certainly NOT miss our almost weekly drive to Danville.

Dr. Taylor is referring her to a GI doc. Amanda had LOTS of blood drawn today for various liver testing. It will take a week or so for the results to all be back. Iron overload is not an "urgent" condition, so we can rest easy for a while. Her ferritin is high, but they have seen kids go up in the 7000 range as well.

Her hemoglobin is up and she definetly has more energy and more color in her face. We are also seeing that smile of hers more often.

Thanks for your prayers.

Monday, February 9, 2004 4:30 PM

WBC 1.97
HBG 8.2
PLAT 99
ANC 1600

Amanda's first breathing treatment went well. It took about 20 minutes with her in a little booth. She had to suck on a lollipop afterwards because of a metal taste in her mouth, but otherwise it went very well. She will continue on the 80 percent dose of her oral chemo meds at home. We head back over next week for more chemo (Vincristine)and a count check.

She continues to have a cold/cough. Her coughing is much worse at night to the point of gagging and bringing up phlegm...not pretty. Because of this, it is hard for her to get to sleep, which then makes her tired in the morning. We are REALLY HOPING that she will be returning to school tomorrow. Dr. Taylor did give her an antibiotic and some cough syrup, the cough syrup of which is on back order and we can't get until tomorrow.

A new area of concern is her ferritin level. It is elevated at 3639, normal range is 13 - 150. They will be keeping an eye on this over the next few weeks. This has to do with the amount of iron in her blood. A high ferritin indicates that her liver is not metabolizing iron like it should. If it continues to be high, we will consult a gastroenterologist and talk about meds to get it down.

Once again, thanks for checking in.

Tuesday, February 3, 2004 4:15 PM

The snow is really coming down here in PA. It is a beautiful winter wonderland. I'm thankful that we don't have to be out on the roads today.

I just had to update that I received a call from Amanda's oncologist, Dr. Ramdas, today. Of course, I had a slight panic attack when he identified himself...thinking that this has to be bad news. Usually the nurses or nurse practitioner calls, never the onc. He said he was reviewing Amanda's recent labs and was concerned about her hemoglobin. (Yes, this is exactly what I was conveying to the nurse practitioner yesterday about.) He said he thinks it would be a good idea to switch her over to the inhalation medicine instead of the Dapsone. I suppose that the NP had not told him that this is what was planned anyway, but my mind feels so much better knowing this suggestion is coming from her oncologist. I feel so much better about the situation now and won't be tossing and turning over it tonight trying to sleep.

I truly believe this is one of those instances where God knew how much this has been on my mind and it was like he was telling me "everything will be okay".

Monday, February 2, 2004 4:50 PM

HBG 7.4
PLAT 104
ANC 1463

Amanda is feeling much better than she was last week. However, she does have a cold with a persistent cough. Because of the cough, she had a hard time sleeping last night. She did go locally for her blood to be drawn, but unfortunately had no success after two pokes. So we headed over to Geisinger for her to get her counts checked. They could not see her until 2:00, so she missed yet another day of school.

I would have expected to see a rise in her hemoglobin, because she has more color to her face and less fatigued than last week. However, it came down. You just can never seem to tell what those cells are doing inside that body of hers. They are going to wait and see what it is next Monday before doing any transfusion.

I took it upon myself to ask about increasing her back up on the chemo slowly, so as not to have her counts crash and end up in the hospital again and off of her oral chemo meds for weeks. This has seemed to be a pattern for her. Both her oncologists and nurse practitioner had a discussion about this and felt it would be worth a try. I defintely want her getting all the chemo that her protocol calls for to make sure all the "bad cells" are gone....of course anyone would want that. But then again, it is not good to be off chemo entirely for weeks when counts are so low either.

I also asked about the Dapsone she takes nightly being changed to a different med that is administered by inhalation once a month. Dapsone is used to prevent a certain kind of pneumonia. I have read that Dapsone can cause anemia, which is perhaps why her hemoglobin continues to be low. It seems that her one oncologist likes the Dapsone better and the other likes the inhalation med better. So, why not just try Amanda on the inhalation one and see what happens?

I know that if I would not have mentioned the above, none of this would have been changed. I certainly trust her oncologists with her life...literally. I have second guessed myself about asking for a while now about changing the Dapsone and increasing more slowing up to the 100 percent of her chemo. I am pleased that they are listening and willing to change things because of my concern, but certainly part of me would have rather had them suggest it in the first place.

Again, thanks for checking in.

Wednesday, January 28, 2004 8:00 PM

Just a quick update. I spoke with the clinic today stating my concerns over Amanda continuing to feel dizzy, looking somewhat pale, fatigued, coughing, and her persistent nausea/stomach pain. It was decided that she have her counts checked here in Mifflinburg. Thankfully they got a good vein on the first poke. Her hemoglobin is at 8.6, which is low, but not low enough for a transfusion. They are not sure what is causing her dizziness, but perhaps it has something to do with her cold. Her ears do feel clogged up just a little bit.

Hope everyone is enjoying the lovely winter weather that has been sent our way.

Monday, January 26, 2004 11:45 AM

Amanda did go to school for three days last week. Thursday she felt dizzy and her stomach was not feeling the best. She also had trouble sleeping, but was very tired...just unable to sleep. By Friday afternoon, it looked like she was on the mend. Saturday she had a good day and went to the movies with her Nanny. Unfortunately, yesterday she started with a cough, sore throat, runny nose, tummy pains. She slept alot yesterday and looked pale last night with no color in her lips. This would be a sign that her hemoglobin is down and that she might need a transfusion. However, later last night and today, some color is back. She has been very tired and did have some vomiting this morning and back pain. So, I'm asking for some prayers. This really sounds like nothing much, but you just never know where her counts are and how long it might be for her to recover. She still is not caught up on her homework from her last absence and definitely has no energy presently to tackle any today.

We are really hoping that this is just a 24 hour thing, but one just never knows. Thanks for checking in.

Monday, January 19, 2004 1:15 PM

WBC 1.94
HBG 10.0
PLAT 170
ANC 1125

Amanda is feeling 98% better!!! I dropped her off at school around 11:30 today. This is the first she has been back since the Christmas break. Her energy level is up and she is only complaining a little bit about her knee hurting. Her stomach pains are gone as well as her cough. We are looking forward to some good weeks, or perhaps I can even go as far as saying, some good "MONTHS" ahead. Her counts are excellent. Her chemo is increased to 75 percent now and she did start her steriod pulse today,so hopefully that won't start her stomach problems back up again.

She did have a busy weekend. She finally got to see the movie Cheaper by the Dozen on Saturday. On Sunday, she went to see the Lady Lions basketball game, which she absolutely loves to go to. Last night, she also went to her youth group meeting. They are doing a project where she will have to fast for 30 hours. She is very excited about this and did get the okay from her doctor to participate as long as she can drink juice. Her doctor said she would even sponsor her for this event. If anyone else would like to sponsor her ($30) please e-mail me or give her a call. This is a program set up by World Vision and I think this will be quite the experience for her.

Thanks for checking in. Next labs check is in two weeks.

Monday, January 12, 2004 8:00 PM

------Tuesday, January 13 ------(PRAYERS NEEDED)
I was just visiting another website of a girl who recently relapsed. Her name is Julianna. Her father is quite the writer and has a certain knack of explaining how things are when you have a child living with cancer. I know it would be okay with him that I post Julianna's webpage address. If you have time, please stop by and read what he has to say and PLEASE leave an encouraging message in her guestbook. When times are hard, the guestbook entries help so much to get someone through the day....even if they are strangers.
www.caringbridge.org/canada/julianna/

Also, there is yet another family that needs your prayers. Ashley, who is about eight I'm guessing, is awaiting for a bone marrow transplant for her ALL. She recently relapsed. Over the weekend, her 21 month old brother, Ryan, was also diagnosed with ALL. I can't even imagine having two children with cancer. They really, really need your prayers.

Thanks,
Lori

Amanda had a clinic visit today. Dr. Taylor took off part of the scab on her knee and took another culture just to make sure the antibiotics worked. She took her last dose of IV antibiotics at 12:30 this morning. Her port site is a little sore, but not too bad. Her white count is 3.6. They wanted it to come up to help fight off the pseudomonas. Now, she will start back on her oral chemo pills (50 percent of her usual dose).

Thursday night she came down stairs and informed me that she did not need to use her crutches anymore. That was certainly a good sign. Her knee still looks sore, but so much better. She is asking for her pain pills less frequently. Dr. Taylor said it was good we brought her in when we did...we certainly did not have much of a choice because of the amount of pain she was in.

Hopefully she will be returning to school Wednesday or Thursday. She is still very tired and cannot seem to catch up on her sleep. The homework is piling up and I think she is a bit overwhelmed with it all right now.

We return to the clinic next Monday for counts and Vincristine.

Wednesday, January 7, 2004 3:45 PM

WBC 1.50
HBG 9.3
PLAT 116
ANC 885

Because Amanda has remained fever free and has gone without the morphine for a while, she could come home today!!!

On Sunday around 9:00 PM an orthopedic resident came into the room and looked at her knee. He said the knee needed drained and the fluid would be tested. If it tested positive, surgery would need to be done ASAP. We are so thankful that everything came back negative. The procedure of aspirating the fluid was not something I would like to remember. It was very painful for her and the resident had trouble getting any fluid out, which lead to more poking, etc. She kept asking for "sleepy medicine" like when she gets her spinals. Finally she was given Ativan which helped her to sleep that night, but certainly did not help with the pain of the procedure.

She was started on GCSF shots on Monday to bring her white count up. All chemo is on hold. Her official diagnosis is pseudomonas; a nasty bacterial infection. She is still unable to put any weight on the knee and is currently using crutches. Her knee looks much better, the redness is almost all gone. She has a large pustule, however, that has grown in size.

She was sent home on two different IV antibiotics and the GCSF shot that I will be administering. I'm a little nervous about giving her all this medicine, hoping that I use proper sterile technique. These will be given around the clock into her med-a-port, so I also hope I don't sleep through an alarm and get her all off schedule.

She is happy to be home, as am I. Hopefully this will be her last admission...FOREVER!!

Sunday, January 4, 2004 10:15 AM

WBC <0.2
HBG 7.2
PLAT 139
ANC 0

Amanda's knee continues to give her pain. She gets morphine every two hours and they just added Oxycodone. Her oncologist wants a surgeon to look at it, as it may need drained. She cannot walk on it at all. The area of redness has gotten bigger, extending over her entire knee cap. The cultures did grow something "gram negative", but not yet identified. Because it is gram negative, the Vancomycin antibiotic will now be stopped.

She ran a slight fever last night. She hardly ate anything yesterday...just feeling down in the dumps.

They are not sure why her hemoglobin is dropping, especially after the transfusion on Friday. She will get another unit today.

Again, thanks for checking in. Please leave any encouraging message in the guestbook for her.

Friday, January 2, 2004 4:00 PM

WBC <0.20
HBG 7.0
PLAT 171
ANC 0

Amanda had fevers off and on last night. She also started with "dots" again. The one on her knee is causing her extreme pain whenever she moves her knee. We held off on calling Geisinger, but went to the clinic first thing in the morning. When we arrived her temp was up again, higher than before. Dr. Taylor looked at her spots and said it could possibly be pseudomonas, staph, or cellulitis. He took a culture of the knee, which she did not tolerate very well at all...ouch!! She definitely needed to be admitted. Also she had cultures taken through her mediport and peripheral cultures. When she was finally admitted, chills became part of the scene as well. After a hot soak in the tub, those seem to have subsided.

She also had a chest x-ray because of her persistent cough. She is on three different antibiotics right now. Tylenol does bring the fever down, but after four hours, it is up again.

She will also be getting a blood transfusion because of her low hemoglobin. She just mentioned the other day about how tired she has been feeling and wondered if she needed some "juice".

Her immunoglobulins are a little out of sink as well, but they are holding off on IVIG for now. I'll keep you posted if that is necessary.

I'll try and update tomorrow. Thanks for checking in.

Thursday, January 1, 2004 9:00 AM

We are definitely looking forward to this new year. Amanda will be off treament in 2004 (September 26). Last night she told me her New Year's Resolution was to be nicer to her brother and sister. So....we shall see.

She had a fever last night, but thankfully it went away. She still has a cough and sometimes some tummy pain, but all in all is doing rather well. A friend came over to visit yesterday and plans are being made to be with another friend on Friday.

Monday she is due for a count check. She did agree to have it done at Family Practice Center. Hopefully there will be success with the first poke. I certainly won't miss the drive to Geisinger and she won't miss as much school.

We all had a wonderful Christmas. However, we decided not to attend the Christmas Eve service because of how crowded it gets and all the germies out there right now. This was a hard decision for us to make. We did our own devotions at home around the Christmas tree.

HAPPY, HEALTHY NEW YEAR 2004!!!

Monday, December 22, 2003 5:15 PM

WBC 2.94
HBG 9.4
PLAT 149
ANC 2381

Her spinal tap went well today. She did have a problem with her oxygen saturation level falling from time to time and the monitor beeping. This would upset her because she had to wake up and take some deep breaths, interupting her sleeping time. Presently she is up in her room napping. So far she is not having much back pain...keep your fingers crossed.

Last night she was up coughing a lot. Her lungs sound good and clear. They started her on another antibiotic. She also starts the Prednisone today. I think this combination will probably do a job on her stomach. Looks like it is going to be one of those l-o-n-g winters. Thankfully we all had our flu shots and that is reassuring.

Next count check will be in two weeks.

Wishing everyone a very Merry Christmas and a Happy New Year!!

Our love,
The Galers

Monday, December 15, 2003 3:30 PM

WBC 6.2
HBG 10
PLAT 142
ANC 5000

All counts are up. It is actually a good sign that all levels came up. If the white count continues to rise and the hemoglobin and platelets fall, this would not be a good sign. We are thankful they are all up, although they are higher than they ideally should be. So, she will now be back on 100 percent chemo as per her protocol. Hopefully her counts won't crash like previously. It sure is like walking a tight rope, as Dr. Ramdas says, in keeping the counts where they like them to be.

On Monday the next 12-week cycle starts all over again. This means a spinal tap. She used to handle these very well. I have heard that over time, the more taps that are done, the more pain they can have with them. Her last two taps did not go real well and she had lots of back pain. Hopefully this time around will be different.

Last week Amanda was having some rather intense leg pains, but thankfully they subsided. We are hoping she will be able to stay in school for the entire week. She had a good weekend and seems to be feeling rather "chipper".

Just thought I should add that Dave escorted Amanda to the clinic today. I stayed home and wrapped gifts (which I'm still not done with). It was a nice break for me. We are really trying to convince Amanda into having her counts checked by her family doctor here in Mifflinburg. This would, however, probably mean a few pokes because her veins are not very good any more. This does not appeal to her at all. Presently the clinic accesses her port and she feels no pain with that.

Well, the kids just walked in the door from school. Everyone is hungry. Gotta go. Thanks for continuing to check in on Amanda.

Wednesday, December 10, 2003 12:30 PM

WBC 2.06
HBG 9.9
PLAT 125
ANC 1236

Her counts look good....yeah! She is now to increase at home chemo to 75 percent. Counts will be checked again on Monday.

On Sunday night around 10:00 Amanda called me up to the bathroom to look at her "spots". Indeed, she did have spots mostly on her legs and abdominal area. Okay, what caused the spots....who knows. Since she did not have a fever and felt fine otherwise, I decided to take her to her family doctor early Monday morning. She was started on Keflex just to make sure they did not turn into something more serious. Now, the Keflex makes her tummy upset, so she came home yesterday early from school and is staying home today as well. She is also fighting a cold.

Now for the good news. Last week she came home from school all excited that she was chosen to sing a short solo at the Middle School Christmas Concert. She had to audition in front of her classmates and her classmates voted on who they thought should get the solo. The concert was Monday night. She did very well. We are very proud of her.

Tuesday, December 2, 2003 4:30 PM

WBC 2.76
HBG 9.5
PLAT 110
ANC 1925

We had a really nice time camping with my brother and his family at Myrtle Beach. We are already planning to do some more camping trips with them. Kyle and Tyler enjoyed each other's company; almost inseperable. Joseph and Jen played together alot. Adam was always busy entertaining himself. It was good to see everyone. The kids did manage a little time at the beach before it got cold, while Karen and myself shopped. We arrived home last night around 9:15, it was a long day on the road. The RV worked out well. Nanny and Pappy Galer met up with us on Saturday on their way back from Florida and traveled back with us. It was good to see them and they were happy to see Amanda, as well as all of us.

We played the waiting game at the clinic today. Amanda needs an x-ray of her hips to check for AVN, avascular necrosis. She is having no problems, but they are x-raying everyone on her protocol so they have a baseline in case something happens. Anyway, we thought we would have the x-ray done while we were waiting for her lab results, but it just never happened. It is kind of funny that you rush around so you can get there, but when you get there, you do nothing but wait. I'm contantly telling Amanda "patience is a virtue".

Her white count is up like expected. She will now start back on chemo at 50 percent of what it should be, slowy working her way back up. Counts will be checked again next week.

Monday, November 24, 2003 3:00 PM

WBC 1.63
HBG 11.6
PLAT 181
ANC 749

Amanda did receive Vincristine today and is to start her Prednisone pulse. However, her other chemo is still on hold until the ANC reaches 1000. Prednsione does raise the neutrophil count, so next week she will be back on track with her at home chemo meds as well.

Yesterday we stopped by Bucknell University where the Chi Omega gals were doing another wish walk. This year they are helping a boy with spinabifida make his dream come true. It was good to see the girls again, as well as our Make-A-Wish coordinator, Marissa. We will forever be indebted to them for everything they have done for us.

Amanda continues to feel well. She went to the PSU Lady Lion's basketball game on Friday night with a friend, her Pop-Pop, and great Uncle Paul. On Saturday she had a birthday roller skating party to attend. Yesterday afternoon we also finally got to see baby Tanner. He is sooo cute, of course.

Thanks for checking in. HAPPY THANKSGIVING!!!

Wednesday, November 19, 2003 1:35 PM

WBC 1.3
HBG 11.6
PLAT 182
ANC 712

Looks like she will be off to school tomorrow. She has been feeling extremely well. She is a bit overwhelmed with all the work she needs to make up for school, but is working on it. She did make it on the honor roll, which she is very proud of. Not much else to report (thankfully). Counts will be checked again on Monday. All at home chemo is still on hold, as ANC needs to be a bit higher before starting the chemo again.

Please pray for the Sterling family. Little Bennett, 18 months old, fought his battle with brain cancer long enough.

Saturday, November 15, 2003 6:30 PM

WBC 0.83
HBG 8.0
PLAT 121
ANC 174

We are home. Looking back on all her previous admissions, this one was a relatively short one...but they are all draining to both Amanda, as well as myself. It really makes you appreciate uninterupted sleep.

The cellulitis, lesion, nodule on her chest (everyone called it something different) is getting better. It still looks pretty sore, red, and just plain yucky, but much better than it had. She will be on antibotics at home to help with any infection. Her throat culture, blood cultures, and chest x-ray all came back negative. She has been fever free for two days. Her abdominal pain and sore throat are all gone. She did have a blood transfusion today because of her low hemoglobin.

We were hoping to be discharged sooner in the day, but there was a problem getting blood from her port. This postponed things a bit. To my surprise, Amanda was rather patient with it all. I think all she cared about was getting home to see her dog Buddy.

Today is Kyle's birthday. He is with his father and two of his friends celebrating. I have not seen him yet, but I can't believe he is 15. I'll probably get the chance to embarass him with a big hug and a kiss in front of his friends when they get home.

We are to get Amanda's counts checked on Wednesday. No school until then. Looks like she will be playing the catch up game again. She is doing much better. Its good to see the smile back on her face. Thanks for checking in.

Thursday, November 13, 2003 11:00 AM

WBC 0.54
HBG 10.2
PLAT 169
ANC --

First some good news. I would like to annouce the birth of Tanner Martin Ilgen. He was born 11/12/03 a little after 1:00 AM weighing in at 8 pounds 15 ounces. Congratulations Monica, Rod, Hunter, and Maci on the new addition to the family. I am looking forward to giving him lots of hugs and kisses.

Now, for the other news. Amanda was admitted last night. We checked her temp at 6:00 and it was 99.7. At 8:00 it was 102.5. At 9:15 it was 103.8. Because she has very little white count, it is standard protocol for her to be admitted. We headed over to Geisinger and arrived around 10:00. It took quite some convincing to get her to go, but she finally agreed. She knows that once she is admitted, it is hard to "get out of jail". She is having some abdominal pains, headache, a slight sore throat with a slight cough, and also some cellulitis.

Her mood this morning has been much better. Presently she is being visited by her Nannal and Pop-Pop Ilgen playing cards. Her other grandparents, Nanny and Pappy Galer, were to leave for Florida today. However, they said they just can't go knowing that Amanda is in the hospital. They will be visiting shortly and hopefully can be convinced to start their vacation today.

She continued with a fever throughout the night and this morning. Cultures were drawn to check for signs of infection. In order to be discharged, she needs to remain fever free, cultures need to be negative, and her white count needs to continue to rise. At the earliest we are told Saturday.

She was really looking forward to watching the Penn State Blue Band perform. Being a member of the middle school marching band, there was a trip planned for all members who showed interest to watch the Penn State Band on Friday night. The plans were for myself along with a friend of Amanda's and her mother to drive up to PSU and watch the band. She is quite disappointed. But, there is always next year.

Please keep Amanda in your prayers for a speedy recovery and sign her guestbook so that she knows others are checking up on her.
Blessings,
Lori

Monday, November 10, 2003 3:15 PM

WBC 0.3
HBG 8.3
PLAT 166
ANC 0

Her counts are down again, which means holding all chemo at home. She is also going to stop taking Dapsone. This is a med she takes daily to ward off a type of pneumonia. This will be replaced by an IV med that she will need to get monthly. I have heard, however, that this IV med has potential side effects. Looks like I will be doing some research on the internet again. Her doctor is not sure if the Dapsone is really causing the low counts, but wants to discontinue it just to see.

Amanda had a good weekend. Her tummy pain finally subsided. However, today she seems to have a stomach bug with some bowel troubles. She gets rather intense abdominal pain and then has to go to the bathroom, which then makes her feel better. Now with hardly any white count to fight this off, it will probably take her a while to recover from it. As long as she does not get a fever, things should be just fine. She was told it would be okay to return to school, even with the low white count. However, with this stomach thing, it probably would be best to keep her home for a few days.

We are hoping to celebrate our Thanksgiving this year with my brother and family in Charleston. We are planning on taking our new "used" motorhome and do some camping with them. The girls are excited about the trip. Kyle on the other hand needs some convincing that it will be a fun trip. He would rather just stay home and play computer/video games all day I guess. He turns 15 on Saturday. I feel like our days of doing things as an "entire" family are going to come to an end soon. Where does the time go?

Thanks again for checking in on Amanda. Assume no news is good news. Next update will be next week after her labs are checked.

Monday, November 3, 2003 8:00 PM

Hope everyone had a great weekend. Amanda had a rough week last week with some tummy pains. She took over 20 pills Monday night and then continued with steriods until Friday. I think the combination did a job on her stomach. Tonight she takes only 15 pills, but we have noticed a pattern with the methotrexate causing tummy problems as well. She has to take the methotrexate once a week, 10.5 pills. She missed most of school last week. I'm hoping the new anti-nausea pill they gave us to try tonight will do the trick....it only costs $50 a pill!!!

Anyway, she also has been having some low back pain and some headaches. But, she is up in her room trying to concentrate on getting her homework done. Jennifer is tapping on the piano and singing, which I love to hear. But, of course, the noise is not helping Amanda's headache. Another fun night at the Galer's.

Jennifer was sick on Sunday with a fever up to 102.2, but she is much better today thankfully.

Friday night we went halloweening. It was a very mild night temperature wise and the girls had a great time....just wish I would have remembered to take some pictures. Now that I'm 40, my mind is off in space sometimes...hehe.

Next update should be next Monday. Thanks for continuing to check in on Amanda. Our love, The Galers

Monday, October 27, 2003 2:30 PM

WBC 1.25
HBG 9.8
PLAT 160
ANC 750

Amanda continues to do well. Her ANC is okay, to continue on same dosages of chemo at home.

She is very excited to be participating in the middle school marching band. A Halloween parade is scheduled for tonight. The middle school band will be marching with the high school band dressed in costumes. She is going to be dressed as a cheerleader. Hopefully the rain will stop so everyone can enjoy the parade.

We had a great time watching Amanda's uncles run in The Baltimore Marathon. It was a perfect day weather wise, a beautiful fall day. They both did great. Craig has been running marathons for years and says he wants to do at least two more. This was Kurt's first marathon. He says he will absolutely NOT do anymore marathons. He does not understand why someone would put their body through all that again. I admire anyone who can run 26 miles....period. JOB WELL DONE CRAIG AND KURT!!! You made us all proud. After the marathon we went to a five-story mall. Amanda and Jennifer went to Build-A-Bear. Amanda stuffed a monkey and Jennifer a rabbit. We also ate at The Rain Forest Cafe, which was a nice treat for all the kids. Everyone enjoyed some special family time together. We missed Kyle not being with us, but he was busy with two band competitions that day.

Thanks for checking in again. Next update in two weeks.

Monday, October 13, 2003 3:00 PM

WBC 1.61
HBG 8.9
PLAT 177
ANC 1248

Her ANC is right where they want it to be. There is a slight change in her at home chemo (continue on 75 percent 6-MP, increase Methotrexate to 100 percent). Dr. Ramdas did not want to increase both meds yet, for fear of perhaps having her counts crash like they had previously. Labs will be checked again in two weeks.

Amanda enjoyed a church outing yesterday with her youth group and thoroughly enjoyed picking on her Pastor. It was good to see her running around and playing with other kids her age. She has a few school projects she is working on right now that are taking up some of her free time. She is still playing catch-up for the days she missed, but is handling everything very well.

We are heading to Baltimore on the weekend to watch her Uncle Craig and Uncle Kurt run in a marathon and cheer them on. Everyone is looking forward to it.

Sunday, October 5, 2003 5:00 PM

Amanda has been feeling better. Her back still hurts just a bit from time to time, but not really bad. Her tummy pains and eye burning symptoms are all gone. She has missed six and a half days of school in two weeks, but tomorrow she should return and play the catch up game.

Guess that's it for now. Just wanted to let everyone know she is doing better.

Thursday, October 2, 2003 11:00 AM

Just a quick update. Amanda continues to have the back pain. I spoke with Dr. Taylor this morning. He did prescribe some pain pills. Hopefully they will work. Her stomach is also not feeling well and her eyes are "burning". She did manage to take her achievement test yesterday, coming home around noon. Today she tried to go to school, but called me around 8:15 and wanted to come home. I'm concerned about her missing too much school and falling behind. Hopefully things will improve over the weekend and she will be back to her "normal" self on Monday. Thanks for checking in. Our love to you all.

Tuesday, September 30, 2003 3:45 PM

WBC 2.27
HBG 9.8
PLAT 167
ANC 1634

Because of a scheduling conflict, Amanda actually went to the clinic yesterday. It was decided to do both a spinal and a bone marrow aspiration. The procedure did not go all that well, but I won't go into the details. Anyway, Dr. Ramdas reviewed her previous "slides" and saw some suspicous cells, that is why they decided to do the bone marrow aspiration. We have been on pins and needles all day and just received a call stating "ALL CLEAR". Needless to say, we are very relieved. She is now increasing her chemo from 50 percent to 75 percent. This week is a steriod week, so her counts will definitely go up. Her next appointment for a recheck is in two weeks.

She missed school again today because of some back pain, but presently is up walking around pretty good. Tomorrow and Thursday she has achievement tests at school. We are hoping she will be up to par and be able to take the tests. Sitting seems to cause the most pain.

Thanks for checking in again. On a side note, Kelsey Kuhns came home from Philadelphia on Friday....more good news!!!

Tuesday, September 23, 2003 6:45 PM

WBC 1.43
HBG 10.1
PLAT 151
ANC 600

Her white count seems to be going the wrong way presently. She is figting a cold and sometimes has some belly pains. No fevers....yeah!!! There are alot of "bugs" going around right now. She is to remain on the 50 percent dose of chemo for this week again. Her hemoglobin and platelets look great.

Long term maintenance consists of 12 week cycles that repeat themselves. She will start another 12 week cycle again next Tuesday. A spinal tap with chemo into the spine will be given.

Not much else to report. Thanks for checking in. I'll update again next Tuesday.

Tuesday, September 16, 2003 5:30 PM

WBC 1.67
HBG 9.6
PLAT 158
ANC 951

Not much new to report. She will remain on the 50 percent of chemo for the time being. Counts will be checked again next Tuesday. Its good to see her platelets rising and her hemoglobin holding steady.

She continues to have lots of pep. She is complaining about doing homework and how she has to study for quizes and tests and about teacher personalities. At least she has homework to do and is busy enough (and well enough) not to be laying around watching TV. These are the little blessings that I enjoy now when comparing things to last year. I thought I had it rough sharing one bathroom with four brothers and two parents. You would think it was the end of the world having to share one bathroom with only two other kids. (LOL) She thinks she should have a bathroom of her own, of course.

Thanks again for checking in. Will update again next Tuesday.

Tuesday, September 9, 2003 12:45 PM

WBC 2.27
HBG 9.6
PLAT 130
ANC 1634

HAPPY 13TH BIRTHDAY AMANDA!!!

Amanda's counts look fantastic and she is enjoying her birthday. Gifts were given to her by the clinic nurses today. It was a special treat for them to think of her on her special day. And what better a gift to receive than good news about her counts.

She will now start back on her chemo pills at home at the 50 percent dose of what they should be. Next week she will get her counts checked again.

She had a busy weekend. On Saturday she went to the Penn State game with two of her friends, dad, and sister. Sunday, she went to Knoebels. Yesterday, back to school. She had her first clarinet lesson of the year. She is excited to start playing the clarinet again. Looks like the Middle School is going to be starting a marching band as well. She has also joined the chorus at school and is looking at joining one club.

Tonight we will celebrate her birthday, just a small celebration with family. Last year she was admitted on her birthday. She has come such a long way. All praise be to God. Please uplift a prayer of thanksgiving.

Tuesday, September 2, 2003 2:20 PM

WBC 1.1
HBG 9.8
PLAT 122
ANC 44

It looks like Amanda is not tolerating the at home chemo, 6-MP and methotrexate. Her ANC went from 344 last week to 44 this week. She will now enter her third week off chemo. I had a long discussion with the nurse practitioner today. She says some kids are just sensitive to the chemo and cannot tolerate the "100 percent" dosage. Looks like Amanda will be one of those kids. Once her counts do start to rise, they will start her back on the chemo at "50 percent" and work their way back up to keep the ANC between 750 and 1500. If, however, next week her ANC is not above 500, they will perform a bone marrow aspiration. Its always a bit nerve wracking when this needs to be done, but hopefully her counts will recover next week.

She had a little fever this morning and has had some stomach pains, but continues to eat well. It is okay for her to attend school, even with the low ANC. They are really thinking her counts will come up this week, I certainly hope so.

We spent most of the long weekend at camp. We have not been there much this summer. The Snyder family joined us on Sunday and Monday. It was great to see them and spend some quality time with them. Laughter is good medicine for the soul.

Until next Tuesday, hope everyone is doing well. Thanks for checking in on Amanda.

Tuesday, September 2, 2003 2:15 PM

WBC 1.1
HBG 9.8
PLAT 122
ANC 44

It looks like Amanda is not tolerating the at home chemo, 6-MP and methotrexate. Her ANC went from 344 last week to 44 this week. She will now enter her thrid week off chemo. I had a long discussion with the nurse practitioner today. She says some kids are just sensitive to the chemo and cannot tolerate the "100dosage. Looks like Amanda will be one of those. Once her counts do start to rise, they will start her back on the chemo at 25nd work its way back up to keep the ANC between 750 and 1500. If, however, next week her ANC is not above 500, they will perform a bone marrow aspiration. Its always a bit nerve wracking when this needs to be done, but hopefully her counts will recover this week.

She had a little fever this morning and has had some stomach pains, but continues to eat well. It is okay for her to attend school, even with the low ANC. They are really thinking her counts will come up this week, I certainly hope so.

We spent most of the long weekend at camp. We have not been there much this summer. The Snyder family joined us on Sunday and Monday. It was great to see them and spend some quality time with them. Laughter is good medicine for the soul.

Until next Tuesday, hope everyone is doing well. Thanks for checking in on Amanda.

Tuesday, August 26, 2003 2:00 PM

WBC 1.1
HBG 9.9
PLAT 90
ANC 344

We had a "pleasant" visit at the clinic today. K.J. was there. She is a singer/guitar player that visits area hospitals. She is also from Mifflinburg and I have known her for quite a while. We went down "memory lane" and talked about the good old days. I think Amanda enjoyed hearing about the little stories of when her mom was younger.

As you can see by the above counts, her white count has come up, but not high enough to start the chemo. Her ANC needs to be greater than 750. So, another week on hold for chemo.

Next Tuesday will be the first day of school for Amanda. School starts at 11:00. Our goal is to get to the clinic early, have her labs drawn, give her dose of monthly Vincristine, and be on our way. I would really like to be back to Mifflinburg in time to see the other two kids off to school as well. (I always have to take pictures.) Because Amanda missed almost all of sixth grade, I will probably be a bit emotional to see her off to school. It will be an adjustment for her as well as for me.

Please pray that she will not miss many days this year; that she will have wonderful memories of the seventh grade, that she will progress well academically. Also please keep Kelsey Kuhns and family in your prayers. She went to Philiadelphia today to start the pre bone marrow transplant testing. Her bone marrow transplant is scheduled for September 4th. Their family will be "split up" for quite a while. Tina and Kelsey in Phila with Lynn and Kylie in Mifflinburg, visiting when they can. Kylie is a "perfect" match as a donor for Kelsey. Your prayers are so very much appreciated.

Blessings,
Lori

Tuesday, August 19, 2003 11:15 P.M.

***New Pictures Added***

ALOHA!!!!

We all had an absolutely wonderful time on Amanda's Make-A-Wish trip. We left on Saturday, August 9th. A 10 person stretch limo arrived around 3:15 AM to take us to Baltimore. We were surprised by being "bumped up" to first class. This was the first of many, many surprises on our trip.

We arrived in Maui. At the airport we had another surprise with a greeting from Toni and Kathy Ilgen and family (relatives that live on Maui). It was so nice to have someone greet us, even if they were total strangers. They welcomed us with open arms, like we have known them forever. Thanks Toni and Kathy.

A SUV was rented for us by Make-A-Wish. Our accommodations for the next four nights was at Aston Maui Hill. This was a three-bedroom suite, with a king size bed for Dave and myself. Jen slept off our bedroom on a loft. It was very spacious. It had two stories and three balconies to enjoy the breath-taking views.

Sunday, August 10th, we drove to the Iao Needle and Maui Tropical Plantation. We were in awe of the beauty surrounding us.

Monday, August 11th, we snorkled with the Pacific Whale Foundation. We had to arrive bright and early at 6:15 AM. This is the best time to see all the tropical fish. Snorkeling was a first for all of us. We snorkeled off of Molikini Crater. It is the second largest coral reef in Hawaii. We then went to "Turtle Town" and saw many turtles. This was all arranged by Make-A-Wish.

Before heading back to the hotel, we decided to venture on a road trip to Hana. To get to Hana you enter an exotic tropical rain forest. It is a very curvy road with water falls, views of the coastline, black sand beaches.... I could go on and on. The opening scene of Jurassic Park was filmed here.

Tuesday, August 12th, we went on "Sunshine Helpicopter Tour" provided by Make-A-Wish. This was a fantastic way to see the island of Maui. In the evening we booked a luau for ourselves. Native foods were tried (poi, which no one liked) and hula dancers danced their hearts out.

Wednesday, August 13th, swam on Wailea Beach in the morning. Yes, the water is clear and blue just like everyone says it is. We then flew to Ohau and arrived at Waikiki Beach. Our accomadations were two bedrooms. As soon as we unpacked, off to the beach we went. Waikiki is known for its shopping. So, of course we had to do some shopping as well.

Thursday, August 14th, Amanda's day to swim with dolphins at Dolphin Quest. This was the highlight for Amanda. She had a "special" program with just her and two dolphins and two trainers. She swam with them, feed them, even kissed one. It was great to see her enjoying herself and smiling from ear to ear. This was provided by Make-A-Wish.

We decided to hike up Diamond Head Crater that afternoon. It was a work-out, but well worth it.

Friday, August 15th, we went to Pearl Harbor and toured on the USS Arizona Memorial. It is still spilling oil to this day. Over 1100 men died on the USS Arizona. It lies today where it rested in Pearl Harbor over 50 years ago.

Our last night was spent at another luau which Make-A-Wish provided for us; Paradise Cove.

On the day of our flight back home, we were surprised by a phone call from another relative of the Ilgen's, Pat Lucas. We met her for lunch. It was great meeting a relative so far away from home.

This was certainly a trip of a lifetime for our family. Make-A-Wish did so much for us. Amanda has memories that will last a lifetime, as well as the rest of us. THANK YOU MAKE-A-WISH...MAHALO!!!

Today, Tuesday, August 19th Amanda did have a clinic visit. Her WBC is down to 0.3, which was quite a surprise for us. She is to stop all of her chemo at home and will have her counts rechecked again next Tuesday. Her hemoglobin was also low, so she needed a transfusion. We are also very thankful that she stayed well during our vacation. She continues to feel very well. God has blessed us so.

Tuesday, August 5, 2003 3:40 PM

WBC 1.42
HBG 8.9
PLAT 117
ANC 882

Uneventful clinic visit today, except I forgot to take her brown fuzzy blanket into the hospital and she was "cold". Thankfully we were not there real long. She starts Prednisone for the next five days today. This will actually bring her white count up, which is good since we will be traveling to help fight off those germies. No change in her other meds.

The Galer house is a "BUZZ" right now getting ready for our vacation. Kyle has band camp this week. He will definitely be sleeping on the airplane.

Last Thursday, the package from Make-A-Wish arrived around 11:30 AM. However, we decided not to open it until the entire family could be together. (It was very tempting not to take a peak.) A suprise visitation by the Chi Omega girls from Bucknell added to the festivities. Amanda was certainly surprised. Expect a long update on the 19th with all the details of our adventure.

Tuesday, July 22, 2003 4:00 PM

WBC 2.4
HBG 8.1
PLAT 162
ANC 1079

Amanda continues to do well. Her hemoglobin is somewhat low, so we will have to watch for signs of fatigue and headaches, which would mean her hemoglobin is getting lower and she needs a transfusion. Otherwise, we don't need to be over at the clinic until August 5th. She is gaining weight and is certainly at a normal weight for her age and height right now. Her ANC is right where they want it to be, so no change in any of her chemo meds she gets at home.

We are all getting excited for Amanda's Make-A-Wish trip. We are to leave on August 9th. A limo is to pick us up at 3:00 AM and take us to Baltimore. We will then fly to Houston, switch planes, and fly to Maui. These are the only details that we have. Our "package" of information is to be delivered on July 31st, which will give us more specifics on what is planned for us. Make-A-Wish plans everything!!! Amanda did have a say on things she would like to do while there, so it will be interesting to see what all they have planned.

Blessings!!

Monday, July 14, 2003 1:00 PM

***NEW PHOTOS***

We had a wonderful weekend away from Mifflinburg. Kyle, with friend Aaron, Amanda, with friend Carrie, Jen, Dave and myself went to Six Flags on the weekend. Amanda had a great time. Her favorite coaster was Nitro, second favorite was Superman. Nitro was her favorite because it was long, smooth, and made her feel like she was "flying". She went on it three times. It was a busy weekend, but everyone had a great time. We arrived home late and Amanda managed to get up without a fuss for school today. I'm sure she will take a nap this afternoon, but she is having more and more energy and feeling GREAT!!!

Friday, July 11, 2003 8:30 P.M.

Amanda and Kyle both enjoyed their Camp Dost experience. Its great to have everyone back home and sleeping under the same roof.

Closing ceremonies were a little emotional. They had a Power Point presentation with "Friends Forever" playing in the background. Seeing all the happy faces just pulled at my heart strings. It was really a joy to see, knowing all the pain these kids suffer through. Debbie, a clinic nurse, got up and spoke about Jason. He passed away on Tuesday while at Camp Dost. They really expected him to probably pass away while at Dost; but this is where HE wanted to be. Monday night they had a celebration of his life and he was dancing in his wheel chair. He had Ewig's sarcoma which he battled with for seven years. His battle was a very difficult one, losing a limb along the way. He was a teenager. Wednesday they had a memorial service at camp. A tree was planted and it was dedicated to him today.

Please pray for Jason's family and all families who are losing the battle.

Wednesday, July 9, 2003 11:45 PM

Lab results from 7/7
WBC 4.41
HBG 9.7
PLAT 144
ANC 2904

Well, as you can see by her counts, she finally started Phase 7 of her treatment, long term maintenance!!! Her white count and ANC are up because she has been off all chemo for three weeks now.

I picked up Amanda from Camp Dost yesterday around 8:00, in hopes of getting her back to camp and not miss much of the fun activities scheduled for the day. To make a long story short, Amanda had her tap done at 11:30 because Dr. Taylor had an "emergency". Shortly after leaving the hospital, Amanda started complaining of back pain. She said it was the worst she has ever had after a spinal. Tears were shed and she did not want to return to camp. Since her meds were at camp, I decided to head back there to see if she could be convinced to stay. After lying down for a while she still continued with pain and I decided I could not leave her there being in such distress. We arrived home around 5:00.

Today, she is feeling much better. She was back at camp around 9:00 this morning ready for some fun. She has meet two girls, Britany and Sadie, who she really likes. They had a carnival the first night and a singing group was there on Monday night for entertainment.

With long term maintenance we can expect seeing her have more energy. She repeats the same "phase" every 12 weeks until therapy ends in Novemeber, 2004. She still does need to take quite a few pills at times ranging from two a day to sometimes 16 a day. Most kids have very few problems with maintenance. She will receive a spinal tap every three months. Hopefully she will have little side effects. Its always such a guessing game. Time will tell. She will have lab work done in two weeks. The dosages of her meds will probably need to be changed to keep her ANC within the 1000-1500 range.

Hope everyone is enjoying there summer. Blessings to you.

Tuesday, July 1, 2003 4:30 PM

WBC 1.91
HBG 7.0
PLAT 193 (normal)
ANC 706

She almost squeaked by with starting long term maintenance today, but the ANC is not quite 750; so need to wait until next week. She received a unit of red blood cells today. This was her 35th unit, but who's counting?

Next week she will be at Camp Dost on Tuesday. The plan is for the nurses to check her labs on Monday to make sure her ANC is at the 750 mark, which is should be. On Tuesday, I will take her from Camp Dost to the clinc. Everyone assures me that because she had her labs checked the day before, she can come right in to the clinic, have the tap done, and leave...no waiting. Well, I guess I am a little apprehensive about the "no waiting".

Amanda really has been looking forward to camp. Last year she got sick the first day, so missed almost the entire week. I am really hoping that it is a fast spinal tap so she can return to all the special activities that they have planned.

Amanda decided to get a thank you card for Dr. Taylor in appreciation for all he does for her. Also as a thank you for putting up with all her tears during her last admisstion. Inside the card she put a lottery ticket. You could tell he was touched by receiving the card and said "you did not need to do this", kissed her on her bald head. Says he never plays the lottery and did not know if he needed to scratch all the numbers off at once or just pick and choose to win. I jokingly said, no one ever wins at these anyway. Well, after being told it was okay to scratch them all off, he did have three matching $10,000!!! He kept looking at it in disbelief. Saying he could not accept it and that it would go towards Amanda's college fund. He then called all the nursing staff into her room to look at the ticket. He read the back where it stated to claim your prize you needed to go to the Easter Bunny's House, that prizes must be claimed no later than 30 second after scatching the game card, etc. Well, needless to say, everyone started laughing and laughing. He admitted that he fell for it hook, line, and sinker. Amanda purchased the fake ticket at Spencer's. We tried this before with two of her uncles, but they did not fall for it. It made Amanda's day!!!

Thanks for checking in. Next update should be next Tuesday.
HAPPY 4TH!!!

Thursday, June 26, 2003 1:30 PM

WBC 0.96
HBG 7.9
PLAT 126
ANC 76

Amanda was very, very happy to be out of the hospital on Sunday. She was actually discharged around 11:30. Record time!!!

Because her ANC went down (from 321 on Sunday to 76), she was unable to start long term maintenance. This just means her body needs more time to recover from the chemo. ANC needs to be at least 750 to start maintenance. We are assuming that it was 321 because of the GCSF she got while in the hospital. Because she did not continue on that, her counts came back down. That being said, her monos are at 38. Normal for this is 1-11. These usually go up when the marrow is working hard to recover, meaning higher counts. So, next appointment will be Tuesday. We are not entirely sure her counts will be up then, but they wanted to make sure her hemoglobin goes up and not down. Anything below 8.0 is considered to be transfusion level. She did not get a transfusion today, which I am grateful for. Hopefully this will start to rise.

Summer is definitely here...95 degrees today. Amanda has been enjoying swimming at Aunt Sue and Uncle Dale's (AKA the Tittle Clan). I can't believe the 4th of July is next week. The week after that (July 6th) Amanda and Kyle will be at Camp Dost. This is sponsored by the Ronald McDonald house. Kids with cancer and a sibling are invited. The summer seems to be slipping by already.

Sunday, June 22, 2003 11:15 PM

WBC 0.6
HBG 9.2
Platelets 37
ANC 321

Heading home!!! She needs to get more Neupogen before getting discharged. She has been feeling well and is very excited to be discharged. Hopefully we will be out by 3:00.

Thursday will be the start of Long Term Maintenance. She will have a spinal tap and Vincristine.

Thanks for all your prayers.

Saturday, June 21, 2003 10:00 PM

White count down from 0.4 to 0.3
Hemoglobin up from 7.8 to 9.3 (transfusion yesterday)
Platelets about the same from 34 to 33

Amanda has been having a rash under her arm pits. Dr. Taylor says it is a skin infection. Because her white count is not rising, she needs to stay to be monitored. He is going to be starting her on Neupogen (or G-CSF). She has never had this before. This is to help boost the white count. It takes "days" for the Neupogen to start working. So, we are trying to prepare Amanda for a few more days of being here. Her only request is to see her dog Buddy.

She has been fever free---yeah!!! Nurse Trish made slime with her last night. Dave brought a friend, Carrie, for a short visit which helped as well.

The Relay for Life event is quite wet, muddy, and cold. Kyle and Dave spent the night at the event.

Please send notes of encouragement to Amanda through her guestbook. THANKS!!!

Friday, June 20, 2003 3:35 PM

Unfortunately, Amanda is still in the hospital. She had a slight fever again last night (100.5). Her white count is the same at 0.4. Her hemoglobin is down to 7.8 and she received a unit of blood. Platelets are about the same. She is really down right now. We were just so sure that she would be going home today that it made it more of a let down. She asked to leave her room for a few minutes and her nurse said no, even with a mask on. So, she is in tears again. The walls seem to be caving in on her right now. I'll have to get into my bag of tricks to help uplift her spirits.

On a good note, Kelsey is leaving today around 5-6:00. She has been here since the beginning of June. She has been through alot these past three weeks, but will have to endure even more. Please continue to pray for her and her family (Tina, Lynn, Kiley).

P.S. I big thank you to the Tittle Clan for the balloons. Both Kelsey and Amanda smiled from ear to ear....THANKS!!

Thursday, June 19, 2003 10:30 AM

Amanda continues to feel rather well. This morning her stomach "feels different" and she asked for some Zofran, anti-nausea medication. She had a bout of diarrhea yesterday. We are hoping she is not getting C Diff.

She had a little fever last evening (100.5). This is the magic number where cultures need to be drawn again. And, so far no growth.

Her white count did come up to 0.4 today. Her hemoglobin and platelets are up as well. Dr. Taylor is hoping she can go home tomorrow. He knows how much she wants to participate in the Relay, so he is pulling for her as well.

She is asking for her dog to visit her. Tonight is pet therapy night and the nurses are pretty good about letting her see Buddy. She is looking forward to it. Hopefully tomorrow you will see a "we are home" post. Keep your fingers crossed.

Wednesday, June 18, 2003 3:55 PM

Amanda's white count continues to be less than 0.2. Her platelets are low, but not to transfusion levels. Her hemoglobin is 8.9. I thought this would be higher after the two units of blood, hopefully this will start to rise on its own.

She continues to feel rather well. She has not had any fevers since 6:00 AM. So far her cultures have not grown anything.

Kelsey wrote Amanda a note last night. Now they are exchanging notes. They cannot visit each other because of their low white counts. Kelsey let Amanda use her squirt gun this morning. She got Dr. Taylor good. She also squirted her Pop-Pop. Thankfully she is returning the squirt gun to Kelsey so everyone else can stay dry.

Thanks for checking in on Amanda. We are keeping our fingers crossed that she will be discharged on Friday for the Relay for Life event.

Tuesday, June 17, 2003 9:15 PM

Amanda has a busy week planned. She is continuing to go to school for two, three hour sessions a week. This is one on one with her 6th grade teacher. The part Amanda likes the most is that she gets no homework. We are very pleased that she can continue with her studies during the summer months.

This week she also has a confirmation camp day to attend. She has been looking forward to spending a day with other kids her age.

On Friday, at 6:00 she is to be holding the Relay for Life banner with Kelsey Kuhns for the survivors lap. She is also looking forward to participating with the events for Relay for Life.

However, she was admitted today with a fever. Last night she was in the hot tub, probably for much longer than she should have been. Her temp went up to 103. It did come down during the night. When we arrived at the clinic this morning, it was up again. Because she has less than 0.2 white cells she needed to be admitted. Her hemoglobin was 6.1, so needed two transfusions of red blood cells. She received the Vincristine chemo as scheduled.

Dr. Taylor gave her the news about needing to be admitted. Tears were shed, but she understands why she needs to be here right now. Cultures were drawn to see if she has any type of bacterial thing going on. She has continued off an on with fevers this afternoon and evening. Otherwise, she feels okay. Her appetite is down too. However, she is presently eating a bowl of cereal.

She is really, really looking forward to the Relay for Life Event. I'm not sure at this point if she will be able to participate. It will be just one more thing to add to the list of things she cannot seem to do. We are encouraging her and trying to keep her thoughts positive right now.

Friday, June 13, 2003 9:45 PM

We made an unscheduled visit to the clinic today. I was concerned because Amanda was complaining of her med-a-port hurting with movement and it looked a little swollen. When I called the clinic this morning, of course they said they needed to see it. Amanda was not very happy with me, as she really does not like any "extra" visits to the clinic.

As it turns out, it is nothing to worry about. They think some blood may have gotten under the skin which is causing the pain and slight swelling. As long as it does not get worse, it should be just fine. Since we were at the clinic, they decided to check her counts. She has been getting more bruises. Her platelets were only 24, so another transfusion was ordered. Thankfully, it did not take long for the platelets to arrive and they were transfused within 30 minutes. Her ANC is still zero and her hemoglobin 8.7.

She has been fever free---yeah!!! However, she does get occasional headaches now. This evening she was complaining of severe leg pain, with me having to carry her upstairs because she did not want to move them. Presently she is soaking in the hot tube. Hopefully that will help. The leg pains are more than likely from the Vincristine. This is a common side effect.

Next clinic appointment is Tuesday for a count check and more Vincristine. Hope everyone enjoys their weekend.
HAPPY FATHER'S DAY to all the dads!!!

Tuesday, June 10, 2003 9:15 PM

***NEW PHOTO ADDED 6/11/03***

School ends tomorrow here in Mifflinburg. As I think back on what 6th grade meant for Amanda I find myself feeling kind of down. She missed most of the year; memories that she will never be able to make up again. But, I know I need to look on the brighter side, 7th grade and future grades will be her time to bloom.

Last week's visit was a record for being short and this week was up there in the record books for being the longest. Her ANC is zero like expected. She needed two units of red blood cells because of a low hemoglobin (5.4) and a unit of platelets (13). It took a while for the blood to arrive, so transfusion did not start until around 12:30. We left the clinic after 5:00.

She refused to eat any hospital food, so ate no lunch. She was a little irritable being couped up in the little exam room for almost eight hours. However, managed to get some homework done.

I'm trying to stay positive and keep thinking "no admission". This is the week that her body will really feel the effects of the high-dose chemo she recently received.

Thanks for checking in. Don't forget to leave a note of encouragement in her guest book. Thanks, Lori

Tuesday, June 3, 2003 2:00 PM

Okay, I think a record was broken today. We arrived at the clinic around 8:30 and left around 10:00!!! Because she needed to receive the chemo regardless of what her counts were, we did not need to wait like we normally do for her lab results. It was just a special treat to be out and about at 10:00. We decided to do some shopping and then ate lunch out.

We got to see Kelsey while at the clinic today. She had a rough weekend, but seems to be doing better right now. Her sister is a 6/6 match for a bone marrow transplant, which is EXCELLENT news. What a blessing. Sounds like Kelsey likes to pick on Dr. Taylor, shiny head, as well. He sure does take alot of abuse, but all the nurses say he deserves it (lol). He is great with the kids.

Amanda's counts are coming down as expected. Her ANC is 757, with a white count of 0.97, hemoglobin of 8.3. Next week she will more than likely need yet another transfusion of red cells. Her platelets are 84, down from 130. Hopefully they won't drop to the transfusion level of less then 10.

This is all to be expected. Her ANC next week will more than likely be zero again. This will be the last "big blast" of chemo to get rid of any hiding leukemia cells. We are all looking forward to starting long term maintenance the end of June, hoping for some normalcy again.

Tuesday, May 27, 2003 5:45 PM

It was a busy day at the clinic today. We left the house at 7:25 AM and arrived home around 4:30 PM. She did have her spinal tap. Cytoxan was administered IV over 60 minutes with lots and lots of IV fluids with it. That is why it took fairly long today. I have chemo (ARA-C) to administer as a "push" into her port along with Zofran to help with nausea/vomiting. The chemo combination will make her counts crash in about two weeks. The last two times she had this, she was admitted for a fever with abdominal pain. Its pretty nasty stuff. Hopefully she will have minimal side effects from it this time around. She also starts on 6-Thioguanine for the next two weeks which is in pill form. Her ANC today was 1152, this is good. Her other counts look good as well. She is to return to the clinic in one week, June 3rd.

We had some devasting news this week. A little girl named Kelsey, that lives in Mifflinburg as well, relapsed. She started chemo yesterday and she will be having a bone marrow transplant done. Please add Kelsey and her family to your prayers. THANK YOU!!!

My love,
Lori

Monday, May 19, 2003 4:45 PM

Amanda needed another blood transfusion today. Her platelets are within "normal" range. It has been a while since we have seen a normal platelet count. This means her bone marrow is working well. I guess I was a bit surprised to see a normal platelet count in the middle of delayed intensification.

Her ANC is 546. We are certainly glad this is up from zero. It needs to be 750 to start the next part of this phase. Because Monday is Memorial Day, she will have her clinic visit on Tuesday, May 27. She will have a spinal tap, intrathecal methotrexate, and IV Cytoxan. She will also start another chemo pill at home. Nurse Mom will have to administer ARA-C chemo into her port at home. Because of this, her port will remain accessed, meaning she will have a needle in her 24 hours a day. She needs four doses and then she can be deaccessed.

She is doing better this week. Her tongue ulcer is almost gone. She has had no belly pain. She is looking forward to the Memorial Day celebrations that we have planned. Her doc said she should have lots of energy with not having any chemo recently and all the blood she has gotten to fuel her body. She has a "full tank" right now.

Once again, thanks for checking in on Amanda and keeping her in your prayers. Next update should be May 27th.

Monday, May 12, 2003 7:30 PM

Hello all. Amanda has been feeling rather tired. Yesterday was not really a good day. She looked very pale and had some complaints off and on of back and stomach pain. We almost headed over to the hospital because it was difficult to control. But, she managed to wait it out. Her hair has/is falling out again. This is to be expected, but still hard to see again. This should be the last time for this to happen. She also has some sores on her tongue.

I wanted to get over to the clinic as early as possible, because I knew she needed a transfusion. We arrived around 8:30. As soon as the nurses saw her, they knew she was not feeling well. Her pains she was having on Sunday were most likely from the Decadron. Her last dose of that was last night. Her hemoglobin was 5.2 (normal 11.9 - 14.7). She received two units of blood. It took over five hours for the transfusion. She still continues to be a bit moody, so we had a few moments of not being very patient.

Her ANC is now zero. School is out of the question. I'm not sure if she will be able to return for the rest of the school year. Her teacher will still continue to come for homebound instruction. We are trying to see if we can have some teaching over the summer as well. Amanda is not too happy about this, but we feel it would definitely benefit her and prepare her for a full schedule in the fall.

She is scheduled to start the second part of this phase on Monday, May 19th. However, it is really doubtful that she will. Her ANC needs to be 750 before she gets anymore chemo. So, next update will be next Monday. Please pray that she does not "catch" any illness right now. Any fever, and she is admitted for at least two days and it seems that whenever she gets admitted two days always turns into three, then four, etc.

Monday, May 5, 2003 2:40 P.M.

Another quick visit at Geisinger today. She received her Doxorubicin and Vincristine. This week will be another week on steriods. Her ANC was 152, anything below 500 she is considered neutropenic. Her white count is at 0.52 (normal 4.0 - 13.5). Because she starts the steriods, that should help to bring her white count back up, or at least not go down any further. She does have the go ahead to continue with school since she only goes for two-three classes a day. This makes me a little nervous because her immune system is weak right now, but I know it is good for her spirits.

Next Monday is another clinic visit, but just to check counts, no chemo. This is to give her body a little break before she starts the second half of this phase.

May 10th marks the one year anniversary of diagnosis. At times I find it hard to believe that it has almost been an entire year, and at other times I think when is this going to end? The day is still very vivid in my mind, like it happened yesterday. I remember so many details and yet, after hearing the word "leukemia" come out of the doctor's mouth all the medical details were just a blur. There were definite times when my faith was tested, but without my faith I'm not sure where I would be. I don't know how parents without faith in God can go through such a battle. She has had seizures, seven admissions, 39 blood product transfusions, and many, many tests. She is a brave little girl. I am very proud of her. She is my hero.

Monday, April 28, 2003 3:00 P.M.

Amanda has been doing fairly well this week. She has not been sleeping well, still awake at 2:00 AM. We think this is from the stroids. She took her last steroid pill last night. Hopefully she can catch up on some missed sleep. Her moods have been somewhat better with this pulse of steroids compared to the last.

She really, really enjoyed going on the field trip last Wednesday with her 6th grade class. She was wiped out when she returned home, but is glad she went.

Yesterday was a beautiful sunny day. Dave thought it would be fun for the family to go hit golf balls. I'm not a golf fan like he is, but all the kids got along very well. It was good to see everyone getting along for once....one of those rare occasions in the Galer household.

After much debate, Amanda has decided to give Camp Dost a try again this summer. If you recall, this is a special camp for cancer kids to go to, along with one of their siblings. Kyle went last year and loved it. Amanda got sick the first night and had to come home. She was not sure she wanted to try it again. But, after much convincing, she has decided to give it another try. It is planned for the second week in July.

It looks like our trip to Cedar Point, Ohio, will have to be rescheduled again. We planned on going last June, then rescheduled it for this June. Because of the many delays Amanda had in her chemo treatments, we will have to postpone it again. She is a little down about it, as well as the rest of the family. Dave says we should consider going somewhere else, since we both took off time from work. I'm concerned that if she gets a fever and we are hours away from Geisinger, that it could create a problem. Her counts will definitely be down in June, so staying close to home is the best course to take.

Her treatment went well today. It was actually a rather quick visit for once. Her counts are really good right now because of the striod pulse. Her weight is holding steady. She did have some back pain last week after the spinal and saying that she thought she would not get it this time around. She also had some tummy aches this past week. We are all looking forward to ending this last rough phase. Seven weeks left and then she will start maintenance therapy until November, 2004.

Monday, April 21, 2003 5:15 PM

Hope everyone had a joyous Easter celebration!!! A special thanks to Irene and Pete for the yummy strawberry pie and other special goodies. They were very much appreciated. We decided to rise and shine yesterday and went to the 7:00 Easter "Dawn" service. It was an uplifing service.

Amanda started Delayed Intensification today. Her spinal tap went well. She says she has no back pain either, commenting that this is the first she has not had any back pain after a spinal. She will return to the clinic next Monday for more chemo. She will also now be taking Dexamethasone as part of her chemo treatment at home this week. She may have some stomach upset this week, but she is taking other meds to help control this.

She is really looking forward to her 6th grade class field trip. She has a thumbs up from the doc. They will be going on Wednesday to Harrisburg. I will be going along, just to keep an eye on her. I asked her if I am going to "cramp her style". She says she is glad that I'm going along.

Next update should be Monday, April 28. Thanks for checking in.

Wednesday, April 16, 2003 11:57 AM CDT

Just a quick short update. Amanda's counts were not high enough to start the next phase. This caught me a bit off guard because she has been off chemo for 16 days, and then she really was not getting much. We go back over Monday. I guess I just want to get this over with. However, I realize that her body just needs a little more time to recover.

Hope everyone has a joyous Easter celebration.

Tuesday, April 15, 2003 11:49 AM CDT

Tomorrow Amanda starts her last intensification phase!!! She will have a spinal with chemo and some other chemo IV drip. She also will be having an echocardiogram. One of the chemo drugs can cause damage to the heart, so they want to keep an eye on that. She had this done once before. What hair she has will probably fall out again. She will start steroid pulses again. These are usually trying weeks for us in the Galer house, because she has really bad "mood swings". Parents in my support group for kids with ALL call it "roid rage"....how lovely. However, because of the steroids her appetite will increase, so I'm sure she will be putting on some pounds, which is good. Another good thing about the steriods is that it helps to keep her counts up.

She continues to go to school. Her class is taking a field trip to Harrisburg on Wednesday, April 23. Hopefully she will be able to go. She is really looking forward to it.

We have been spoiled having a 16 day break from going to Geisinger. I will update when I get a chance with how things go tomorrow. Please say a special prayer that her spinal fluid will be "all clear". THANKS, Lori

Monday, March 31, 2003 5:59 PM CST

All is well with Amanda. Her white count is down some, so she did not receive the escalating dose of Methotrexate she was due for. One of the main side effects of the Methotrexate are mouth sores...actually the entire GI tract can have sores on it. We are so pleased that Amanda did not have a one. This was quite a concern for us. She is not to receive anymore Methotrexate IV. She will still get it injected into her spine with a spinal tap, but that is only every eight weeks. She did receive Vincristine, which is just a "push" into her port. Usually she has no side effects with this.

Her weight is down two pounds. Dr. Taylor is concerned, but gave her a lecture about drinking Boost and eating all she can. So far, no NG tube reinsertion.

Dave wanted to talk with Dr. Taylor today, so he stopped by for a short visit. We are still concerned about Amanda not receiving the Erwina. Unfortunately, it does not look very hopeful for it to be manufactered any time in the near future, if ever. Dr. Taylor stated that this does happen sometimes, when a child cannot receive all the chemo they are supposed to get because of various problems (adverse reaction to the drug as well as drug unavailability). We just have to trust the Lord and keep praying for no relapse.

Amanda continues to go to school. She has a hard time getting up and is sometimes grumpy because of the lack of sleep. She is definitely not a morning bird, but certainly is a night owl. Softball also starts this week and she is planning on participating as long as she has the energy.

Thanks for checking in on her and for your continued prayers. Next update should be April 16, her next clinic visit where she will start Delayed Intensification II.

Friday, March 21, 2003 4:15 PM

Sorry for the late update, I had trouble getting into the webpage yesterday.

Amanda started back to school on Monday for two classes. She needs to be there at 9:43 and I pick her up at 11:20. It is working out very well. We thought it would be a good idea to get her back, even if it is only for a little bit. Hopefully, when she enters the 7th grade next year, it will be an easy transition.

Amanda had her increased dose of Methotrexate yesterday. Her hemoglobin was low, so she received some blood. All her other counts look good. She has really breezed through this phase compared to the last time. We are so very thankful about this. It seems like things are actually getting back to normal with not having to go to the hospital so often and Amanda feeling well. She did have a few bouts of some abdominal pain this week, but it did not last all day.

Presently she and Jennifer are in the kitchen mixing a cake for some company that we are expecting this evening. Seeing her full of energy and being more like herself is good for our hearts to see.

Again, thanks for your continued prayers.
Next update should be March 31, which is her next clinic visit.

Monday, March 10, 2003 3:00 PM

I think both Amanda and myself were in shock as she stepped on the scales this morning---both taking a deep breath and hoping her weight would be up. Up four pounds since her last visit. NO NG TUBE!!! She was so thrilled. She had to call her grandparents and father right away to let them know the good news. Her counts are low, but not "extremely" low. So, she received her full scheduled dose of chemo. She is not having any major side effects during this phase. It is so nice to have a breather from it all. She looks so well. Praise God!!

Her hair is starting to come back in. Last night she decided it would be okay to cut the remaining "whisps" of hair. I think it looks better trimmed. Presently it looks darker than before. She says she will miss her red hair if it indeed is darker. There is a possibility that she will lose it again during the next phase. Hopefully she can be hat free for the summer months.

***CHECK OUT NEW PHOTO WITH HAIR***

Again, thanks for your continued prayers. Next update should be March 20.

Thursday, March 6, 2003 12:50 PM

Just a short update. Amanda is doing very, very well. We went to the Ash Wednesday services last night and everyone was commenting on how well she looked.

She was due for a weight check tomorrow. I called the clinic and asked if this could be postponed until Monday when she has her next round of chemo. Since she is doing well, they said okay. Hopefully she will continue to eat well so no NG tube placement will need to be done. Will update again on Monday.

Friday, February 28, 2003 5:30 PM

Amanda received another round of chemo. She is on "escalating" doses of the Methotrexate. Meaning that if she has no adverse reactions, it will be increased by 50 mg at every treatment. So far so good. Her counts are down, but not to the "cautionary zone". Her weight is also down by two pounds. They were getting ready to put the NG tube back in. But after a bit of discussion, decided to wait one more week. As long as she does not lose anymore weight, no NG tube. I just have a feeling that she will need to have it reinserted again. I thought she ate fine this week, but she still lost two pounds. She needs to return next Friday for a weight check only, no chemo. Next update should be Friday. Thanks for your continued prayers.

Wednesday, February 26, 2003 8:45 AM

Amanda has been doing really well. She is looking forward to her usual Wednesday outing with her grandparents this afternoon.

I just received some bad news about a little girl, Chloe, who is two years old. She has ALL also and relapsed while still on treatment. I don't usually ask for prayer for others, but this family truly needs everyones prayers right now. The hospital is over 160 miles away from their home. They have six other children, ages 16 to 5 months. Chloe is in a lot of pain right now. It looks like she will need a stem cell transplant. Chloe's parents have put out a plea for prayer. This is weighing heavy on my heart, so the least I can do is try and get as much prayer for Chloe and her family as possible.

Thank you.

Lori

Wednesday, February 19, 2003 4:30 PM

*****CHECK OUT NEW PHOTO*****

Last night I had trouble getting fluid to run into Amanda's NG tubing. After much trying, I finally gave up and decided that she would just have to miss a night. It definitely was clogged.

I called the clinic this morning and they said there really is not much that can be done for a clogged NG tube, except to take it out. The nurse said we could come over today and have another one placed. I said that she has been eating very well and her weight is up. Dr. Ramdas decided it would be okay to give it a try with no night feedings and see how she does. Amanda took the NG tube out all by herself. She had a little bit of difficulty, but she did it. She is such a trooper!!!

Tuesday, February 18, 2003 4:15 PM

THANK YOU for all your prayers. Amanda's counts are UP!!! She started the next phase, Interim Maintenance, which lasts for eight weeks. She had the spinal tap, which went well. They drained fluid out and put chemo in the spinal fluid. She also recevied two other chemo treatments (Vincristine and Methotrexate). She will now return just every ten days for treatments!!!! It will be nice not having to run to Geisinger so often. Her weight continues to be on the rise. Her energy level is good. She went sled riding yesterday. She says if her back did not hurt so much today, she would have liked to sled today as well. I told her she looks like an old lady walking around the house bent over. LOL That's the new joke for today. She thinks it funny.

Again, thanks so much for your prayers. Next update should be Friday, Feb. 28.

Tueday, February 11, 2003 3:00 PM

Last Friday Amanda had her neuropsych appt. If you recall, we were told to be prepared to stay for eight hours. We arrived at 8:00, dealing with snow once again. At 9:30, Amanda was brought out to the waiting room. I thought it was rather soon for a break. At that time I was informed the testing was all finished. It was decided that since she is not having any problems, not to re-test her entirely. We don't have the official results yet, but everything appears to be just fine.

Today, her ANC only went up to 591 (last week was 570). She was not able to get her spinal tap/chemo because counts still too low. If her counts don't come back up by next Tuesday, a bone marrow aspiration will have to be done to check on the marrow. However, I was reassured that it is unlikely for her counts to stay low. Other factors in her lab results are showing that her ANC should be on the rise. Please pray that Amanda can start this next phase on 2/18, that her white count/ANC will "come up".

Her weight is doing really, really well. She gained six pounds in one week, taking her up to 79 pounds. Her night feedings can be decreased from 12 hours to 10 hours. Her new foods of choice are Oreo cookies, freezy Cokes, and Burger King hamburgers.

She does have more energy this week. I'm trying to encourage her to get as much school work done as possible while she is feeling good. Of course, that is not going over too well.

Guess that's it for now. Thanks for checking in on her. God bless. (next update should be next Tuesday)

P.S. Happy Valentine's Day

Tueday, February 4, 2003 6:55 PM

Amanda's ANC was over 3000 on Friday, today down to 570. This needs to be 750 before starting the next phase. So, no spinal tap or chemo today. Amanda was actually a little disappointed because she just wanted to get it over with.

Her weight is down to 73 pounds. Lost two pounds since Friday. Because of this, the NG tube was inserted today. She tolerated the procedure very well, I won't go into the yucky details. She is not very happy about the tube. Her throat is sore and it hurts when she talks, but this will get better in the next few days as her body accepts the tubing.

She has a neuropsych appointment on Friday. This is a six-month follow up appointment. She has the neuropsych testing because of the brain radiation she had back in June/July. She is to be prepared to stay for 8 hours of testing. It will be yet another long day for her.

Next Tuesday we return to see if she can start the next phase. She will need to be fasting in preparation for the spinal. Hopefully her counts will be up enough to start the next phase of treatment.

I'm not sure if I mentioned this before or not, but Novemeber 26, 2004 is her last date of treatment!!! It seems so far away, but the time is going rather quickly. It's been almost nine months since she was diagnosed. The longer she stays on treatment without a relapse the better. Thanks for your continued prayer. Next update will be next Tuesday. Our love to you all.

Friday, January 31, 2003 at 10:10 PM

Amanda did need a transfusion today. Waited almost three hours until they started the transfusion, another two to receive the transfusion. She did manage to get a nap in though. Her white count is great at 3.77, almost normal. Her ANC is over 3000. She has two thumbs up to go to the Penn State Lady Lions Basketball game on Sunday. Dave has been wanting to take her and two friends for a day out. She is really looking forward to it.

Her weight is stable for the time being. The last few days she has been doing quite well. However, today has had some nausea and not eating again.

The plan is to start interim maint. on Tuesday. Will update then.

Tuesday, January 28, 2003 at 07:10 PM

Her last of six Erwinia shots is over!!! (for this phase anyway) Her hemoglobin is at 8.0 (Sunday it was 8.2). Usually anything below the 8.0 mark and she gets a transfusion. Decided to wait a few days before another transfusion to see if it comes up on its own. Friday we go back to the clinic for just lab work, no chemo.

She has been feeling nauseated, joints aching, tired, and just a little "crabby".

She should start the next phase probably Monday. It starts out with a spinal tap and two chemo treatments. The protocol then calls for Erwinia the next day. The purpose of this Erwinia is to help lessen the effects of the chemo given on Monday. They call it a "rescue" drug. It is not used in this instance as a "chemo treatment". Because of this reason, they are not as concerned in her missing this dose. Ideally, it would be good to have; but it can be missed at this point in treatment. A missed dose in the delayed intensification phase would be more harmful.

Thanks for checking in on her. Our love to you all.

Sunday, January 26, 2003 at 08:15 PM

Amanda's visit went well today. Next shot will be Tuesday. Her hemoglobin is going down again, but everything else is looking good. Her ANC is 463, so almost at that 500 mark!!! It should keep rising. The ARA-C she had almost three weeks ago now. This is what really brings her white count down to zero. Almost finished with the delayed intensification phase. When her ANC reaches 750, she can start the next phase, interim maintenance. She has had this phase before. It lasts for 56 days. She will be getting treatments only every ten days. Yippee!!

Amanda saw the nurse practitioner on Friday. She really did not have any definite answers regarding the Erwinia. Just that they have contacted people regarding this and have not had any response back yet. I find this to be very frustrating. She had a nurse practitioner today, as well, at the hospital. She did not have any new information to offer.

I have been trying to do some research on why there is no supply of Erwinia, as it is a very important part of her protocol (CCG-1961). I have contacted three docs at St. Judes via e-mail. I sent the e-mail yesterday and all three have replied back already; I was very impressed. They use their own protocols at St. Judes, not CCG (Children's Cancer Group). I'm going to try and call the CCG tomorrow. I really don't expect to get any direct answers, as I realize they need to talk to a physician, not a mom. I just feel like I need to be pulling for Amanda as best as I can to know she is getting the best treatment available. I'm hoping to speak with either Dr. Ramdas or Dr. Taylor on Tuesday reagarding all this. Hopefully they will have some answers for us.

Friday, January 24, 2003 at 03:30 PM

Uneventful trip to the clinic today. She had her pre-meds, shot given, vitals taken for an hour, then left. She has been feeling rather well. Arrived home around 2:00. Need to return to the Hosptial Sunday for the same treatment.

Upon arrival home Amanda decided to take a bath. I was trying to get a few chores done and went out into the garage. I heard this scratching noise. It sounded like a mouse. Eeek, I don't much care for mice. It was coming from a cardboard box on top of Dave's work bench. I found enough courage to look in the box expecting to scream when I saw the creature...it was Buttercup, Amanda's lost hampster. He has been "missing in action" since last Thursday night. It is absolutely amazing he has survived, especially with all the frigid temps. We will never know how he got there, but Amanda is overjoyed she has her Buttercup back.

Wednesday, January 22, 2003 at 07:00

We're home!!! She had no fevers at all last night. Her counts are looking better and better every day. Her ANC is up to 321. Dr. Taylor wanted her to be weighed at the clinic today, so we walked over there after being discharged. Her weight today was 76.2 pounds. He says that he expects it to go lower, but will give her two weeks to be back up to the 76 pound mark. If not, the NG tube will need to be put back in again.

She will be making up the four missed doses of the Erwinia. She had one today. Will need to head back over on Friday, Sunday, and Tuesday. We were told during this admission that Erwinia is in short supply. They have enough for the next three shots, but not sure when or if they can get anymore. URRG!!! I will definitely be asking more questions about alternatives on Friday.

Amanda was considered to be the healthiest hem/onc kid on the floor. We are very blessed that she has not had any other stumbling blocks since the seizures back in May. We are assurred that leukemia patients are often admitted for fever, that its to be expected.

We are also blessed with the greatest parents/grandparents. I am so very thankful for everything they do, especially when Amanda is in the hospital...the visits to the hospital, uplifting Amanda's spirits, bringing what food Amanda is requesting for the day, helping with Kyle and Amanda (and Dave too), even taking the dog to get groomed. THANKS NANNAL & POP-POP AND NANNY & PAPPY. We love you!!!

Tuesday, January 21, 2003 at 1:30 PM

Amanda had another fever last night. Her hemoglobin is down again, so yet another transfusion was given today. Her white count is 1.38. This is very encouraging. Her appetite is still down. Has not eaten anything yet today. Says will try some cereal soon.

Dr. Taylor is hoping that tomorrow she will be able to go home. Her counts are coming up and fevers are not as frequent. Platelets are at 35, so she is replenshing them on her own.

She will be getting chemo tomorrow. Will get a weight check at the clinic before coming home. If she does not go home tomorrow, we will have one depressed/frustrated little girl. Please pray that things continue to go well and she will be discharged tomorrow.

Thanks!! My love.

Monday, January 20, 2003 at 04:10 PM

Amanda had a much better night last night. Went to bed around midnight; but then slept rather soundly. Her ANC that was 30 yesterday came down to 10 today. This is what needs to hit 300 before can be discharged. Her platelets are getting at the dangerously low point also at 21. Dr. Taylor says the C Diff can make the counts go low. She spiked another fever during the night, but so far today has been okay. Her appetite is still decreased.

Dr. Taylor doubts that her counts will recover by tomorrow, maybe Wednesday. It is getting harder and harder to keep her occupied. If any of her classmates are reading this, please feel free to give her a call. (271-8386) I'm sure hearing from you would help lift up her spirits.

Thanks for your continued prayers.

Sunday, January 19, 2003 at 02:43 PM (CST)

Amanda had a long night last night. Complaining of abdominal pain, diarrhea, vomiting, fevers.

Dr. Taylor stated that if her white count did not come up, TPN would have been started for today. We are very pleased that her white count is now at 0.7. Her hemoglobin came up as well. Her liver functions are starting to go back to where they should be also. :)

Three things are needed for discharge. Her ANC needs to be 300. This is her absolute neutrophil count. Presently it is at 30. She needs to be able to eat and keep it down. She needs to be fever free for 24 hours.

She did eat at least a few bites for lunch today. She had a slight fever this afternoon. Her spirits are up. Predicting to be home on Tuesday, hopefully.

Thanks for your prayers.

Saturday, January 18, 2003 at 04:00 PM

They have a diagnosis for the diarrhea and decreased appetite and fevers---clostridium difficile or C Diff. She had this before back in September. They started her on a different antibiotic Flagyl, which can also cause stomach problems, but this treats the C Diff the best. Her total bilirubin is coming back down. White count up to 0.3; its good to see it come up, even if it is just a little. The hemoglobin is down, so needed another transfusion.

Because the C Diff is contagious, she needed to move to a different room that is sort of away from the other rooms. She was not real happy about moving. Calls it the "junky room" because the TV makes noises and you can hear more noise from the hall. She has been a bit moody and just wants to get home for a good night rest.

If her appetite does not return, she may need to be started on TPN, nutrition through her mediport; this will mean a longer stay. They want to start her on chemo before coming home also, but her counts need to be better for this. It's difficult to get any definite answers as far as a discharge date; there are just too many things to take into account right now.

Last night when I was checking in on her while she was bathing (yes, she still takes at least six to seven baths a day to help relax her), she stated I had interupted a prayer. She was praying for three kids who have just been newly diagnosed with ALL.

She did manage to squirt Dr. Taylor today with some water from a 60 cc syringe. This made her happy and it was good to see her smile.

Once again, thanks for checking in on our little Amanda and for keeping her in your prayers. God Bless.

Friday, January 17, 2003 at 08:15 PM

I've been trying to post almost all day, but the computer has been acting up here at the hospital. Anyway, she has had two fevers since the last update. The cultures are not growing anything so far; this is good. Her white count is the same. If her platelets and hemoglobin don't come up with tomorrow's labs, she will need transfusions again. Her appetite is still not real good. She also is having diarrhea.

Dr. Ramdas says if she is fever free for 24 hours, she will be able to be discharged. He mentioned Sunday; but only if the fevers stop. He is not sure what is causing the diarrhea, but cultures were just done today for these. Her total bilirubin was not checked today, but will be checked tomorrow.

She did get a new hampster on Monday, Buttercup. It seems that he is quite the escape artist and got out of his cage last night. Of course, Amanda says she wants to leave so she can find him. (HA) Hopefully he will show up being okay.

Dr. Taylor is on for the weekend. I will try and update tomorrow as long as the computer is willing.

Thanks for your prayers.

Lori

Thursday, January 16, 2003 at 03:45

Upon arrival at the clinic today (around 8:45) Amanda's temp was 101.4. Anything over 100.5 needs to be admitted because of the low white count. Her white count is less than 0.2. Her total bilirubin did go up instead of down :( and her hemoglobin was low. She finished a transfusion around 3:00. Dr. Taylor (or Dr. Shinny head) says no more chemo until her white count comes up and her total bilirubin comes down. Tuesday was told that if she skipped a dose of the Erwinia it would not be made up. However, today Dr. Taylor says that it can be made up when her counts are better. Her weight is back up two pounds. She is feeling better than she was on Tuesday. Of course, she did not want to be admitted, but only a few tears were shed.

They took blood cultures today. These need at least 48 hours to get an accurate reading, but can tell as early as 24 hours if anything is growing. She is getting IV antibiotics as precautionary measures right now. Has not had a fever since admitted. Will probably be a 2-3 day admission at this point; time will tell. Thanks for checking in. Will update tomorrow.

Tuesday, January 14, 2003 at 02:30 PM

Just a quick update. Amanda has been having diarrhea and nausea. Has lost three pounds in four days, taking her down to 75 pounds. We did meet with the dietician today with some more suggestions. Even the mention of any dietary supplement drink to Amanda and she immediately refuses to even try it.

Her total bilirubin was elevated today at 2.5 (normal 0.3-1.3). Her other liver studies look good. Because of this elevation, the Erwinia shot needed to be skipped today. She is to get a series of six, any missed doses are not to be made up. So, please pray for the total bili to come down so she can continue with proper treatment.

On a good note, her hemoglobin and platelets are good...no transfusions needed!!!! Her white count is still at 0.3. She has been feeling wiped out. Thanks for checking in.

Sunday, January 12, 2003 at 08:20 PM

Dave did take Amanda to Children's Hospital today for her treatment. Her white count is still 0.3; hemoglobin 7.7 (needed another blood transufion); platelets 8 (did receive platelets also). Dave did mention that they arrived at 8:00 and as of 9:30, nothing other than labs had been done. I said welcome to the wonderful world of waiting...ha, ha, ha!!! I did have to chuckle.

She is doing just okay. She is tired and we are not seeing that smile as much as we would like to. Her appetite has decreased, nothing tastes good. Will return to the clinic Tuesday and Thursday for more of the Erwinia shot. Unless anything changes drastically, probably won't update again until Thursday.

Friday, January 10, 2003 at 04:10 PM

Amanda had another transfusion of red blood cells today. Her hemoglobin was 7.0 (normal 11.9-14.7). White count is 0.3 (normal 4.0-13.5). Her ANC is 0 (anything under 500 need to watch those germies--if has a fever, needs admitted). Her platelets are 18 (normal 150-400). She is in need of a platelet transufsion, but Geisinger does not have any supply to give her any. Platelets help with clotting. So far she does not show any outward signs of having low platelets; praise God!

She received chemo in her port (Vincristine) and via a shot in her leg (Erwinia Asparaginase). She now needs to return every other day for these shots; the last one being 1/20. It sounds like Dave will be taking her on Sunday to the Children's Hospital. They need to be there around 8:00 a.m. However, since he does not do well seeing needles, maybe I will have to go too. The nurses have already said that fainting is not allowed, especially an adult in a children's unit. LOL.

They don't expect her platelets to rise on their own, so an order was placed to receive platelets on Sunday. Hopefully there will be some for her by then. The blood supplies are low, so PLEASE donate blood when you can.

When we arrived home today, Amanda's new hampster, Zippy, passed away. We knew it was sick and was warned it might not make it.

Thanks for checking in on her and for all your prayers. She will soon be out of the "delayed intensification" phase and has had no admissions!!!! When she first started this DI phase back in November, I anticipated the worst. Your prayers are definitely helping. Thanks so much. Our love to you all.

(next update should be Sunday)

Friday, January 03, 2003 at 06:30 PM

Another snowy day here in Central PA and off to Geisinger we went. Her counts are falling as anticipated. Hemoglobin was 6.2, so needed another blood transfusion. Her appetite has decreased again, but this is because of the chemo; heavy duty stuff right now. Down three pounds since last Friday. She has been rather tired lately, hopefully the transfusion will help with that. I will be giving her chemo in her port again for the next three days and she continues to take the chemo pills by mouth.

****Check out the new photo from Christmas with her favorite gift****

Next appointment is next Friday, so will update then.

Friday, December 27, 2002 at 06:30 PM

Amanda has been doing well. We all went to the Christmas Eve service. Kyle had a solo playing his Sax and Jen sang in the Cherub Choir. Of course, I cried during Silent Night when all the candles were lit; it was so beautiful. Hopefully next year Amanda can participate in the service. She mentioned earlier in the season about doing a solo, but then decided against it. Sometimes it makes me sad/mad to see her miss so much because of this dreaded disease. She seems to take it all in stride.

We all had a wonderful "white" Christmas. Her favorite gift was a chimpanzee that makes chimp noises and its face moves. (I'll see if I can post a picture in her photo album of this sometime soon.)

She had the spinal tap today, which went well; then the chemo. (The nurses stated she was the first one there, and the last one to leave...yet another long day at the clinic.) I will be administering chemo via her port for three days at home, and she will also be taking a new chemo pill.

She wants to head to the mall tomorrow if she feels up to it, before her counts start to drop again. She recieved money for Christmas that is burning a hole in her pocket. She will return to the clinic next Friday, so next update should be then.

Thanks for checking in on her. God Bless.

Tuesday, December 17, 2002 at 03:30 PM

Amanda had another transfusion of red blood cells today. Her platelets went up instead of down!!! Her white count is starting to come back up (1.1) but needs to be higher to start the next phase. Originally she was to go back on Friday 12/20, but because her counts are not high enough, this was rescheduled for the 27th. Because her counts are on the rise, we can relax and let our guard down a little for Christmas. I certainly don't think this is coincidence, as everything is in His hands; even the little details. As we all prepare to celebrate Christ's birth, from the Galer Family to yours, MERRY CHRISTMAS!!!

Friday, December 13, 2002 at 12:43 PM (CST)

The clinic was very busy today; ran out of rooms, so we ended up waiting in the waiting room for a while. Her counts are low, but that is to be expected. White count about the same. Platelets and hemoglobin are down, but not down low enough for any transfusions. Will need to return on Tuesday just to check counts again to see if she will need a transfusion. She is to start the second half of delayed intensification 12/20. However, her white count will need to come up before starting the next phase. I'm predicting that she will probably have to wait a week or so before starting the seond half of delayed intensification. This will give her body time to recover from all the recent chemo and we can enjoy a Christmas together with her feeling good.

She enjoyed an outing last night at the Mifflinburg Christkindle Market. Jennifer sang with the entire First Grade Class. I must admit tears came to my eyes when she sang Silent Night and did sign language to it. She's been through alot this year as well and is growing up much too fast.

Thanks for checking in on Amanda.

(next update should be Tuesday)

Monday, December 09, 2002 at 02:30 PM

I was just checking Amanda's guestbook and saw a few girls from Chi Omega checked in. Chi Omega recently sponsored a fundraiser (walk) for Make-A-Wish (MAW). We originally did not think that Amanda was eligible for MAW. It was explained to us that because her diagnosis is life threatening that she is eligible. Dave and I felt, and actually still feel, a little uncomfortable about accepting the MAW. We are usually the ones trying to help others if we can instead of the other way around; Dave being a youth advisor for too many years to count and all the various fundraisers. I guess I just feel guilt about getting help from others. Anyway, we felt Amanda deserves a wish because of everything she has to go through. She has decided on a trip to Hawaii.

At first, she did not want to take her brother and sister along. (Oh, such sibling love.) However, MAW insists that the entire family enjoy the trip TOGETHER. We are not sure when this will take place, but will probably be a while because we want Amanda to be well enough to enjoy the experience.

A special THANK YOU to the Chi Omega girls and all their hard work. You really out did yourselves and we are truly thankful.

*****Check out photos from Chi Omega event under "photos"*****


Now for a quick update. Amanda had some nasal discomfort and then pain on Sunday with the NG tube. When I could not get her to calm down, I decided to call the doc on call. He said it would be okay to take the tube out and see how she does. Amanda was elated. Because her white count is so low right now, he does not feel it should be placed back in right away. So, as long as she continues to eat well it can stay out.

(Next update should be Friday)

Thursday, December 05, 2002 at 04:30 PM

We were escorted to Geisinger today by Amanda's grandfather, Pop-Pop Ilgen because of the snow. Thanks Pop-Pop. (I could have done it though.) She received her sixth and last Erwinia shot until the next series in January. She was due for chemo tomorrow also, but it was decided to give it to her all today. So, she received the shot, had some chemo by "push" in her port, and also IV drip chemo. Triple whammy!!! She needed a transfusion because her hemoglobin was low. Her ANC, absolute neutrophil count, dropped from 750 to 100 in two days. Anything under 500 means that if she has a fever of 100.5 or higher we head directly to the hospital. Her white count is 0.6. The Galer (and Ilgen) households have had some kind of a GI bug. Amanda has not had it yet. Hopefully she won't get it.

She will be on the steriod "pulse" again for seven days. Don't have to go back to the clinic until next Friday. YEAH!! (This every other day stuff was the pits.)

The dietician also saw her today. Will start to taper her feedings starting next Friday. Amanda is doing well, having more energy than I had anticipated. I believe some if it is because she is getting the feedings at night. Her weight is at 80 pounds right now; which is a normal weight for her age.

Thanks for checking in and don't forget to drop a little note in her guestbook. She likes to know who is checking in on her. Also, please say a prayer of thanks; as she has not had any more reactions with the Erwinia. THANKS LORD!!!

Friday, November 29, 2002 at 03:27 PM

Everything went well with Amanda's visit today. Her labs are good, no transfusions needed!!!! She is up to 79 pounds now. She really enjoyed all the turkey yesterday. Her spirits are up and she is doing extremely well.

The plan is to go to Children's Hospital on Sunday for her next treatment; only because the clinic is closed...NOT to be admitted. Then back to the clinic on Tuesday, Thursday, and Friday. Things are progressing as they should right now. Will probably not update until next Friday. (No news is good news.)

Hope everyone is enjoying their holiday weekend with family and friends.

Wednesday, November 27, 2002 at 01:38 PM (CST)

NO REACTION today at the clinic. A BIG sigh of relief was given by all. I think we were all prepared for the worst. It is truly a time of Thanksgiving. Our prayers were answered. Four more shots to go and she is done with them for a while. Amanda's mood is much better today also. Because of the steriods, you never really know when she might just "lose it" for no reason at all.

Friday we go back to the clinic for the Asparaginase shot again and two other chemo treatments. Her labs will be checked then also. (Will update on Friday.)

HAPPY THANKSGIVING!!!

Monday, November 25, 2002 at 08:32 PM (CST)

Just a quick update. Amanda had a slight reaction to the chemo Erwinia Asparaginase today...was controlled by another drug. However, she is due for this every other day now until she receives six doses. When I talked with the nurse practitioner about this, she says she would not ever give it to her again; the other two nurses agreed. However, after discussion with the doctor, he feels this drug is too important not to have at this time. So, she is to have another Erwinia shot on Wednesday. They are going to premedicate her with more drugs in hopes of not having any reaction. If she does react, she will probably need to be admitted and try sensitization (which I won't even try to explain at this time).

If you recall, she had seizures after the L-Asparaginase and a severe allergic reaction with the PEG Asparaginase. The Erwinia Asparaginase is their last resort in the "Asparaginase" line which is needed for proper treatment.

Anyway, I was not going to post any of this, but felt I needed to inform everyone and ask, once again, for prayer. Please pray that she has no more reactions. THANK YOU!!!

Friday, November 22, 2002 at 04:06

Amanda's spinal tap went very well today. She usually sleeps through it, but stayed awake and was actually singing at one point. Her mood is very good today. She is even getting along with Kyle and Jen for a change.

Her counts today were good. The nurse says to expect them to drop in two weeks. Her hair has started to grow back in, but it will fall out again during this period also. Her weight is at 78.7. It was decided to keep the NG tube in for another three weeks to see how things go. They are expecting her appetitie to be decreased, so think it is a good idea to keep the tube in at this time. She was not too excited to hear this news.

She will be receiving chemo shots every Monday/Wednesday/Friday for the next two weeks. Counts and more chemo will be given a week from today. (Guess I won't be able to be shopping on black Friday this year.)

I just finished arranging her pill box. She has gone from four pills a day to eleven. Hope I remember to give them to her on time. I have been spoiled with not having to worry about too many pills these last eight weeks.

I just asked Amanda what she would like to say to you for today. "HAPPY" is all she said with a big smile on her face.

Again, thanks for checking in on her and for keeping her in your prayers. Our love to you all.

Thursday, November 14, 2002 at 08:23 PM (CST)

Update on labs done today:
Liver function is still high, but almost back to normal.
White counts are good.
Hemoglobin was low, so needed a transfusion. This was her 16th unit of blood since May. There is a blood drive tomorrow at First Lutheran Church in Mifflinburg from 1:00-7:00. Please give the gift of life!

Her weight is at 77.2 pounds. When she reaches the 78 pound marker, her feeds will start to be tapperd down. If she then maintains her weight, the tube can come out.

She had an echocardiogram done for baseline purposes. They will be keeping a close eye on her heart during the next phase. One of the chemo drugs can sometimes cause heart problems.

The next phase starts next Friday, Nov. 22 (not the 25th that I posted earlier). She will have a spinal tap and chemo. She will also be taking chemo by mouth in what is called "pulses"--on for seven days, then off for seven days. This is a steriod, so her appetite should certainly increase and hopefully the NG tube can come out. This starts the "intensification" phase.

She overall has been feeling pretty good this past week. She has had some bouts with nausea and is fighting off some kind of sinus thing. She did manage to get her weekly shopping trip in...of course.

Again, thanks for all your prayers.

Saturday, November 09, 2002 at 12:18 PM (CST)

I found this poem posted on ALL-Kids web page. It was written by Cheryl Jagannathan, mother to a child who has leukemia and relapsed twice and still won the battle.

THE LITTLEST SOLDIERS

The medals on our chest
Are porta-caths for meds
Helmets won't stay on
'Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, the Silver Star
To place upon our scars.

For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our reward.

Thursday, November 07, 2002 at 01:36 PM (CST)

Weight at 75.9 today. She has been nauseated the last 3-4 days and not eating well, so I'm a bit surprised at the weight increase. The NG feedings are definitely helping. Her CBC counts were all okay today. No transfusions needed. However, one of the liver functions, the ALT, was five times above normal. Because of this, no methotrexate chemo was given. This should go down now because she skipped the methotrexate today. Doc stated that perhaps the elevated ALT could be causing her the nausea. (?) She did receive Vincristine chemo.

Need to return next Thursday just to check labs, no chemo. YEAH!! Were told by the nurses that the next 16 days should be good ones. We will certainly make the most of them.

She has been going to the movies weekly with her Nanny and Pappy Galer. She also has her Christmas shopping all finished.

Starting 11/25 she will be starting the next phase called Delayed Intensification. This lasts for eight weeks. Some kids sail right through this phase, others have many a side effect and admissions. She will be receiving the heavy-duty chemo for this phase. I must admit I'm a little nervous about it all. Please keep prayin'!!!

My love to you all,
Lori

P.S. - What do you think about the picture on the title page? It took me quite a while to get it there, but I think it was worth the effort.

Monday, October 28, 2002 at 03:15 PM (CST)

Hi everyone. Spent most of the day in clinic today, just got home. She received her chemo. Needed a unit of red cells also. Could not wait to get home and take a soak in the tub. Next visit will be November 7. Yeah---ten days away!!! She has gained three pounds, the night time feedings are helping. Will probably need to continue with the NG feedings at least three or four more weeks. She is tolerating them well.

Happy Halloween!!

Friday, October 25, 2002 at 10:18 AM (CDT)

Hi everyone, just a quick update. Amanda has been doing wonderfully. She went to the movies with her best friend, Katie, last weekend. Also got some shopping time in. Was busy working on a school project, made her own island, Monkey Island. Planning on going to the movies again this afternoon with her grandparents.

Chemo will be on Monday. She then gets another ten day break. We are hoping that she might be able to return to school for maybe just a few hours a day. She continues with homebound instruction presently.

Her appetite still is not exactly where it should be; but it is better. Thanks for checking in and for your prayers.

Friday, October 18, 2002 at 01:17 PM (CDT)

Yesterday received the chemo and also a unit of blood. Received chemo today also. Everything went uneventful. Weight is up 2 pounds. The feedings at night are going okay. Her appetite is still diminished. The goal is that her stomach will start to grow with the NG feedings and that actual hunger will return. Still waiting for this to happen, but it is still early in the game. Not sure how long will have the NG tube in.

Next visit to the Geisinger won't be until Oct 28th. She would like to go to the movies sometime this weekend. Dave is going to the Penn State game, and Kyle has a band compitition; so I think we will make a "ladies day" of it tomorrow.

Monday, October 14, 2002 at 03:36 PM (CDT)

Amanda weighed in at 69.9 today. The dietician reviewed her meals for the past week. She averaged around 700 - 750 calories a day. She tried so hard to eat well. Dr. Taylor explained to her that it is not her doing something wrong, but that it is the chemo that makes it hard for her to eat.

An NG tube, or nasogastric tube, was placed today. It goes in through her nose and directly into her stomach. It was done by a nurse in the clinic. She will then be fed at night through the tube and continue to eat as much as she can during the day. Her throat is a bit sore and she has trouble talking; but that should go away in a few days. I'm sure she will be back yelling at her brother and sister soon. She tolerated the placement very well. She is such a trooper.

She is due for chemo on Thursday and Friday this week. The Vincristine is making her joints sore. At times it is difficult for her to walk. She gets the Vincristine every ten days. Today seems to be a better day for the joint pain.
Next update should be Thursday.

Tuesday, October 08, 2002 at 04:06 PM (CDT)

HOME today. Received lectures from Dr. Shiney Head, Dr. Larry (resident), and several nurses on the need to eat. Weight today 72#. To return to the clinic on Monday for a weigh in and for blood work to be checked. Happy to be home.

Next update should be Monday.

Monday, October 07, 2002 at 05:48 PM (CDT)

Weight today 72 pounds. Had a transfusion because hemoglobin low. Had chemo. Feeling good. Will taper off the TPN and the plan is to go home tomorrow. Looking forward to a visit from Katie, her best friend, and Buddy, her other best friend.

Sunday, October 06, 2002 at 02:59 PM (CDT)

Amanda doing good today. Weight is 70.5 pounds. Had turkey, gravy, mashed potatoes, corn, stuffing for lunch. No, not hospital food. Her grandparents brought it for her. Thanks Nanny and Pappy!!

Dr. Ramdos says things are moving along fine. Her counts are good. She needs to continue to eat well. No mention of when she will be discharged yet.

Saturday, October 05, 2002 at 01:33 PM (CDT)

Back up to 70 pounds!!! Eating up a storm. No more nausea or vomiting. Uneventful visit with the doctor this morning.

On a side note...a co-worker of mine in her early 40's, Chris, had a massive heart attack and is presently at Geisinger in the Cardiac ICU. Has only 20% of heart function. Please add her to your prayer list. THANK YOU!!

Lori

Friday, October 04, 2002 at 03:59 PM (CDT)

Amanda's appetite has returned. She was cleared around 12:30 to eat regular food (was on clear liquids only). So far has kept everything down. Continues on TPN. Will be here at least 3-4 more days.

Has gained one pound since yesterday. If continues to gain weight, no PEG tube will need to be placed at this time. Docs not sure what is causing the nausea/vomiting. Were concerned it could be pancreatitis, but ultrasound came back clear. Due for more chemo on Monday.

Her spirits are up today. If anyone is in the area and would like to visit her, please do so. I'm sure she would enjoy seeing you.

Thanks!

Thursday, October 03, 2002 at 04:15 PM (CDT)

Called the clinic this morning because Amanda having stomach pain and some vomiting. Thought she might need to increase one of her anti-nausea meds. Was told she needed to come over to be checked out. Upon arrival a weigh-in was done. Weight now 66 pounds. Lost four pounds in one week. When looking back at her weight upon diagnosis in May, she has lost 30% of her body weight.

It was decided that she needed to be admitted to start what is called TPN. This is a liquid that is dripped into her med-a-port just like any other IV fluid. Sometimes TPN can cause liver damage, so they will be watching this.

Discussion will take place in the next few days to see if she gains any weight with the TPN. Also if a PEG tube or NG tube needs to be placed. This would probably stay in place for the duration of her chemotherapy.

Amanda took the news of this admission much better than the last. Only a few tears shed. Oh, by the way; it is Jennifer's birthday. She is 7 today. Now Amanda has been admitted on her mom's birthday, her own birthday, and now Jen's birthday. Since Kyle's birthday is 11/15; she says she is definitely staying away from the hospital on that day.

Will update again tomorrow.

Saturday, September 28, 2002 at 10:04 AM (CDT)

Going home!!! No more hives. Amanda overjoyed!!! Needs to start eating again. Please pray that her appetite will return today. Thanks

Friday, September 27, 2002 at 07:01 PM (CDT)

Back in the hospital again. Had a bad allergic reaction after receiving her chemo - PEG Asparaginase...swelling of lips, eyelids, hives over entire body. Concerned about airway constriction. She is due for another PEG in 20 days; however, it has been decided that she will no longer receive this. Discussion will need to take place as far as what is to replace the PEG. Continues presently with hives. Also has now been vomiting again.

When was told needed to be admitted was certainly not very happy. She said she was going to walk home herself in the rain!! Would not talk to anyone. She has calmed down since then and is having a better understanding why she needs to be here.

The original plan was that if she did not have anymore outbreaks the rest of today or tonight she would be able to go home. Since she continues to have the hives, doubt will be able to leave tomorrow. Time will tell.

On a good note...the spinal tap results show no signs of cancer!!!!

Thursday, September 26, 2002 at 02:14 PM (CDT)

Spinal tap and chemo today went well. Amanda tolerated the procedure very well. Need to return tomorrow for the PEG Aspariginase chemo. Will then have an entire week off.....hopefully. She needs to drink extra fluids the next few days to help decrease side effects. Feeling very well presently.

Tuesday, September 24, 2002 at 01:57 PM (CDT)

Counts still down too low to start next phase. So, no spinal or chemo today. It has been decided, however, that Thursday will be the day regardless of what the counts are; as the next phase needs to be started. Her weight is up one pound!!! She still has a long way to go, but hopefully her appetitie will continue to increase.

A teacher is now coming to the house. Amanda really likes her. She was here yesterday for about 1 1/2 hours and is to return on Thursday. The school has been great with everything; very supportive.

Thursday will have spinal tap to check spinal fluid and make sure she is still in remission. Will also receive chemo into the spine and two other chemo meds. Friday she will receive the PEG Aspariginase chemo by injection into her thigh muscles (two shots). Guess that is it for now. Thanks for checking in.

(next update will be Thursday)

Thursday, September 19, 2002 at 05:41 PM (CDT)

Just a quick update to let you know Amanda is feeling better. Has not thrown up in three days. Her appetite is slowly returning. She has more energy, although still sleeps alot. Hopefully she can gain a few pounds before the next chemo starts on Tuesday.

She is having a belated birthday sleepover bash with a few of her friends tomorrow night.

Tuesday, September 17, 2002 at 02:51 PM (CDT)

White count still down, so will need to postpone spinal tap and chemo for another week. Which I feel to be good news at this point and time. Her body needs some time to recover. Still not eating well. Weight today 69 pounds. Dr. Taylor thinks that the Flagyl that she is to finish tomorrow is playing a role in her stomach problems. Hopefully when this gets out of her system she will have more of an appetite.

Had a transfusion of red blood cells today because the hemoglobin was low. This, too, should help in making her feel better. She is sleeping approximately 3-4 hours during daytime hours and sleeps well at night. School is still on hold for the time being.

Follow-up MRI of the brain is normal.

So, she gets a whole six days off before needing to visit the hospital again. It sounds like she will definitely be starting the next phase next Tuesday. Will update again then.

Thursday, September 12, 2002 at 11:56 AM (CDT)

Amanda's HOME!!! -- and so glad to be here. Dr. Taylor (or shinny head as Amanda calls him) came to Amanda's room around 9:30. As soon as he saw her armed with a squirt gun, he immediately knew she was feeling better. She has been keeping fluids down and the abdominal pain is almost totally gone. The goal would be to get her on some solid foods and see how that goes. Shinny head also gave her a big speech about eating in general...if she does not gain weight, she will have to go on TPN or use an NG tube. Not fun stuff. Please pray that her appetitie will return.

Her white count is up to 0.9 now; which is far from normal, but at least it continues to rise. If it does continue to come up, Tuesday will be the start of the next phase called interium maintenance. It starts off with a spinal tap. With the spinal tap they will check to make sure she is still with no bad cells in the spinal fluid and also give chemo into the spine. Also gets two other chemo treaments that day. This phase lasts 56 days.

MRI results are still pending.

Thanks everyone for the birthday greetings in her guestbook and the cards that were sent.

Next update should be Tuesday.

Wednesday, September 11, 2002 at 04:24 PM (CDT)

Almost 24 hours have passed since starting the antibiotic to kill out the c diff. Amanda is still with vomiting and abdominal pain.

The plan is to stop all IV fluids around 2:00 A.M. Have Amanda start with sips of liquid; increasing as tolerated. Hopefully she can keep things down. If yes, can go home; if no, has to stay longer.

Not sure now if will be returning to school even for a few weeks. Her white count is up to 0.6. If continues to rise, the next phase is to start on Tuesday. However, they are not sure if counts will be high enough by Tuesday. Time will tell.

Tuesday, September 10, 2002 at 01:14 PM (CDT)

Dad surprised Amanda last night by bringing two of her friends and Buddy for a visit. She also received a cake and gifts from the hospital. Tried to make the best of her birthday; even if was in the hospital.

Did not sleep well last night. Up often with abdominal pain. Continues to have vomiting. Has lost two more pounds..down to 71 now.

One of her stool cultures came back showing what the call clostridium difficile. This is what would be causing the pain and fever and diarrhea. Will now start a different antibiotic and hopefully should be feeling somewhat better in 2-3 days. We are hoping that once this abdominal pain goes away she will start having an appetite.

Her white count has also come up from less than 0.2 to 0.46. Her hemoglobin is coming down, but can get a transfusion for this if continues to go down. Not sure at this time when she will be able to go home.

Monday, September 09, 2002 at 02:35 PM (CDT)

A birthday to remember---admitted today. Having abdominal pain, nausea, vomiting, slight fever. Has not been eating well at all. Admitted for dehydration and possible infection.

Her white count is still less than 0.2. Started her on fluids and IV antibiotics. Feeling rather down and out right now. The doc says he has a special treat planned for her on her special day. Daddy is also working on something to bring back her smile.

Thursday, September 05, 2002 at 02:00 PM (CDT)

Had a transfusion of red cells today because hemoglobin was low. Spiked a little temp with the transfusion, but went back down. Has been tired. Her platelets are replenishing themselves. Her white count is still less than 0.2.

She is very much looking forward to an evening out with her grandparents, Pappy & Nanny, in celebration of her 12th Birthday which is Monday. This is an annual outing with dinner and then shopping!!! Will have to hold off on the sleep over for now; but maybe next weekend.

Next appointment is Tuesday; which will include a follow-up MRI of the brain.

Wednesday, September 04, 2002 at 07:33 PM (CDT)

Check out the new photo. (not sure why it is showing so large)

Tuesday, September 03, 2002 at 01:09 PM (CDT)

Amanda's counts are falling again. Her white count is as low as it ever has been at less than 0.2 (normal 4 - 13). Her platelets and red cells are down also, but not down enough for any transfusions. Because her white count is so low--no school. Had her last chemo (Vincristine) in this phase called consolidation. All her counts need to come up before starting the next phase; which should be in about two weeks. She should be able to return to school next week and remain there for approximately a month, if all goes well.

Return to the clinic on Thursday to check how her counts are doing and possibly receive a transfusion.

Friday, August 30, 2002 at 12:22 PM (CDT)

HOME---that is where Amanda is heading today. She will be getting home IV antibiotics (administered by nurse Mom). Her potassium and platelet levels are good now. Continues with no fevers. Needs to return to the clinic on Tuesday for more chemo.

She absolutely enjoyed her visit last night with Buddy. Smiled ear to ear. Her spirits are up now that she knows she is leaving her lovely hospital room.

Not sure if is she will be able to return to school on Tuesday. Her white count is still too low; but perhaps it will come up over the weekend. Time will tell.

Next update should be Tuesday.

Thursday, August 29, 2002 at 10:39 AM (CDT)

Need to stay at least one more day. Her platelets are down to 18,000. Will get a transfusion today of platelets. Her white count continues to go down; presently at a 0.4. Her potassium is down; will start potassium pills. Complaining of her mouth burning which indicates mucositis. Nothing can really be done for this at this time. On a good note...still no fevers. When Amanda asked the question if she could go home tomorrow, the doctor says "hopefully".

She misses her dog Buddy. The nurses said it would be okay if we sneak him in tonight. She is looking forward to this.

Wednesday, August 28, 2002 at 11:06 AM (CDT)

Amanda has to stay at least one more day at the hospital. Her platelets are the new area of concern. They are dropping too fast. Yesterday they were at 40,000 and today at 28,000. She continues to get IV antibiotics. Her fever is gone---yeah!!! The blood cultures are also showing no growth---yeah!!! Just need to get this platelet thing under control and then will be discharged.

Her spirits are down right now. She does not understand why she needs to be in the hospital when she is feeling so good. She does have access to a computer, so please sign her guest book. Also, if you have any good jokes to tell her; post them as well.....as she can then pass them on to her doctor who is running out of good jokes to tell. He needs a little help in the joke telling department.

Tuesday, August 27, 2002 at 10:47 AM (CDT)

Just a quick update to let everyone know Amanda was admitted last night because of a fever. Will need to be in at least one more night. Waiting on blood culture results to see if has any infection. Receiving antibiotics. Not really liking the hosptial, but accepting it rather well.

Monday, August 26, 2002 at 06:21 PM (CDT)

Amanda's platelets this morning were 6,000. Normal range is 150,000-300,000. So, she needed a transfusion of platelets. Also needed more red cells transfused. Her temp went up somewhat...highest reading being 100; which was a concern...thought she might need to be admitted....thankfully it came back down. She received her PEG Aspariginase chemo today. Will be keeping a close eye on her. Heading back to have her counts checked again on Thursday. Next chemo will be next Tuesday.

Tuesday, August 20, 2002 at 06:46 PM (CDT)

Docs decided to check counts again today because Amanda's blood pressure and heart rate was up. She is in need of a transfusion. This will be done tomorrow.

Monday, August 19, 2002 at 04:13 PM (CDT)

White count at 0.8 today. (normal should be 4.0 - 13.0) Will have to watch those "germies". Her hemoglobin and platelets were ok today; so no transfusions necessary. Waited over three hours to receive her chemo shot today. Fortunately, Child Life Specialist, Becky, helped to pass the time by providing paint and syringes for some interesting painting.

Tomorrow she has a six week follow up appointment at Radiation Therapy with Dr. Yumen. This should be an uneventful visit. Will have chemo injections Tuesday, Wednesday, and Thursday. Next Monday, August 26, will have the PEG Aspariginase injections again. Will probably be due for a transfusion then also.

Amanda is excited for school to start. However, if her white count is still low, she may have to miss the first few weeks of school---?????? Will just have to wait and see. School starts Sept. 4.

Next update should be 8/26.

Wednesday, August 14, 2002 at 11:09 AM (CDT)

Received chemo shot yesterday by home health nurse and today at the clinic. Saw Dr. Spiegel, neurology, today. Evaluation shows no significance with the hand tremors; this sometimes happens after seizures. If they get worse we are to notify him. He would like Amanda to be taken off the Keppra (anti-seizure med) soon. He plans on calling Dr. Ramdos (her hem/onc doc) and discuss this.

She is very tired, has nausea, no appetite...this all since chemo started Monday. Her spirits are still up though.
She has the okay to swim on Saturday if she feels up to it. She is looking forward to this.

Next update will be Monday.

Monday, August 12, 2002 at 04:22 PM (CDT)

Spent most of the day at the clinic today. Arrived home around 5:00. Her med-a-port is working well, but the area is very sore. The nurses suggested that she receive her next chemo via a shot in her arm instead of accessing her port site. Home health nurses will be doing this.

Was visited by a dietician while in clinic because her weight is decreasing. She is now at 77#. She really has no appetite at all. Encourages the use of high nutritional drinks, milk shakes, steak....anything high in calories.

Because Amanda has some shaking of her hands when trying to hold something small or pick something up, she has a neurology appointment on Wednesday. This will also be a good time for follow-up on her previous seizures. She is still taking anit-seizure medication.

Oh, her potassium is normal....so, two less pills to take......yeah!!!!!!!

Next update should be Wednesday.

Friday, August 09, 2002 at 12:36 PM (CDT)

Surgery went well. Had to be at GMC at 7:00 AM. Has three incisions and is sore...presently she is sleeping. Will start chemo on Monday.

Tuesday, August 06, 2002 at 01:56 PM (CDT)

Surgery will be Friday. Her counts are all up (white count, hemoglobin, platelets) yipee!!

Amanda has been busy. She had a pool party on Saturday at her Uncle Dale and Aunt Sue's house. Lots of friends and family. Of course it was so hot, so it worked out very well. It was the highlight of her summer.

Next update will be Friday.

Wednesday, July 31, 2002 at 06:40 AM (CDT)

Update on surgery date.

The soonest the surgeon can insert med-a-port is August 9th. Counts will still be done on Tuesday.

Tuesday, July 30, 2002 at 11:26 AM (CDT)

Amanda's ANC is only 408. (This should be 750 before surgery can be done.) So, surgery is trying to be rescheduled for next Wednesday, August 7th. The ANC (absolute neutrophil count) lists all her white blood cells. The white cells are what fight off infection. They don't want her count low, because then an infection might occur in her new med-a-port line....and we certainly don't want that to happen. She will have her counts rechecked next Tuesday.

Next update should be August 6.

Thursday, July 25, 2002 at 03:29 PM (CDT)

Surgery is scheduled for Wednesday, July 31 NOT Wednesday Aug.1---oops. Her white count is still low. Her ANC is around 280; this needs to be 750 before any surgery can be done. Hopefully this will rise over the next 4-5 days. No transfusions were necessary because her hemoglobin and platelets look good right now. Need to have counts checked again on Tuesday. So, next update should be Tuesday.

Tuesday, July 23, 2002 at 12:06 PM (CDT)

Surgery is scheduled for Wednesday, August 1 for reinsertion of med-a-port. Next lab does not need to be done now until Thursday (7/25), instead of Wednesday. Also will have a follow-up Psych appt. on Thursday. Because of the delay in surgery, she will be one week behind on her chemo treatments. Needs the port in to receive chemo and can't use the one she has in her right now.

Her Ped. Surgeon spoke with me today. He states that there are usually less complications with a single med-a-port...she has a double in presently. However, it is not uncommon for the med-a-port lines to clog up, so that is why a double was put in the last time. Need to decide if double or single to be placed. Hopefully she will not have any problems with the new port....please pray for this.

We are almost out of the "cautionary" period from her last PEG Asparaginase shots and NO seizures!!!! What a sigh of relief. Thanks for the prayers. She is due for another PEG in about 3 weeks.

Amanda has been enjoying herself by swimming. She knows she won't be able to swim for a while after her surgery, so she is trying to swim as much as possible now. We feel this is very good therapy for her. She's diving like a pro!!! And of course her smile is priceless.

Sunday, July 21, 2002 at 12:59 PM (CDT)

check out new photo in album

Thursday, July 18, 2002 at 09:36 PM (CDT)

Amanda enjoyed her time away from Mifflinburg visiting Baltimore. Her most memorable experience was watching the dolphins. She also enjoyed the many different colors of the fish and the Imex presentations. She had her first experience eating fresh crab....looks like we will be making some trips to Red Lobster soon.

Upon arrival to GMC today she had her med-a-port accessed to give blood. There was some concern about how it was working. A dye study was done and showed that the med-a-port has a defect where the port connects to the tubing...it leaks. When asked how often this usually happens...was told "this is the first time this has happened that they know of...more than 20 years"...ha...what luck!!!! As soon as her counts come back up, Amanda is off for another surgery to get her med-a-port replaced. If all goes well surgery should be the end of next week.

She received a chemo drug called Vincristine today. They had to find a vein in her hand to administer the chemo (because of the med-a-port problem) and she was such a trooper. All the nurses say she is so brave.

(next update will probably be Wednesday)

Monday, July 15, 2002 at 03:15 PM (CDT)

Fairly uneventful trip to GMC today. Had to wait 40 min. in waiting room because they were very busy. Labs showing a white count of 0.4; so very prone to getting an infection. Her antithrombin III was low, so needed some of that, which was given through her med-a-port.

Dr. Ramdos tried to explain to me about her coagulation factors. She has what they are calling MTHFR or methylenetetrahydrofolate reductase. This has been with her since birth. This puts her at a higher risk for a stroke or cornary artery disease. It is usually more of a factor for her when she is older. However, because of the leukemia it does raise some concern. Dr. Ramdos has spent what he says "hours" in research and talking with other specialists in the nation regarding this. At this point, she is the only patient with both of these diagnoses together that they are aware of. Will be keeping a close eye on her. Both Dr. Ramdos and Dr. Taylor have been great at informing us about everything; taking the time to explain everything so that we can understand it. We feel very fortunate to have them as Amanda's physicians. We have great trust in them, as does Amanda.

We are taking a small trip to the Aquarium in Baltimore tomorrow. Amanda is looking forward to the trip. We thought it would be best to pick a place where most of the activity is indoors. Got a thumbs up from doc today. So off we go.......

(next update will probably be Thursday)

Thursday, July 11, 2002 at 06:57 PM (CDT)

Oh yes, another wonderful day spent at the hospital...ha..ha!!!

Arrived around 8:45 and had labs drawn...then played the waiting game. Around 1:00 started transfusion of RBC's(2 units needed). It was decided that it would be ok to give the PEG Aspariginase shot. This needs to be given in three injections, which did not go over well with Amanda of course. The "caution period" for seizures will be the next two weeks.

Don't need to return to the hospital until Monday. At that time more labs will be done. Not due for more chemo until Thursday.

Wednesday, July 10, 2002 at 04:46 PM (CDT)

Well...she is there....she is at Camp Dost. I dropped her off around 9:00 this morning. I then spent 3 hours in the front parking lot waiting to see how things went. At noon I checked with the nurse and she said all must be well because she has not seen Amanda. She thought it would be best if we pick her up around 8-8:30 tonight...so Amanda would not have to worry about any sleeping arrangements.

Tomorrow is a big day. She will be getting a chemo drug called PEG Aspariginase. The docs think that the Aspariginase is what may have caused her seizures. However, after speaking with specialists all over the country, they feel it best to continue on with it. Please pray that she will have not more seizures. She will also receive another chemo med tomorrow and perhaps more platelets. Because of all of this, we do need to head over to GMC. If all goes well she can then head back to Camp Dost.

Monday, July 08, 2002 at 05:58 PM (CDT)

Thought it was time for some updating.

Thursday, July 4th. Amanda enjoyed the company of friends and family. She watched her Uncle Craig, Uncle Kurt, and cousin Zachary (age 11) run in the 5K race; had a picnic at her Aunt Sue and Uncle Dale's pool in the afternoon; had a friend, Whitney, join her for more 4th activities in the evening. Did NOT miss going to GMC for a day!!!

Friday, July 5th. LAST DAY OF RADIATION!!!! She was given her "mask" to take home with her. We are planning to "burn" the mask sometime when we are at camp....she will never have to see the dreaded mask again.
Had a transfusion of RBC's because her hemoglobin was low. Also some concern about coagulation of blood...will have more on this later.

Friday night spent the night at Nittany Mountain Camp. It was a beautiful night under the stars.

Saturday, July 6th. Did ceramics at camp...she has been waiting all summer to do ceramics. It took 3 hours+ to get her project...a multi-colored worm...complete, but she is very proud of it. Saturday afternoon/evening spent time celebrating her cousin, Tyler's, Birthday. He is now 12!!1 Happy Birthday Tyler!!!

Sunday, July 7th. The day she has been waiting for. Off to Camp Dost. Camp Dost is sponsored by Geisinger for kids with cancer. A sibling is also invited to attend. So, yes, Kyle joined her at Camp Dost, which is located in Millville. Around 7:30 P.M. received a call from Camp Dost stating Amanda having severe abdominal pain; requesting that we come over. Labs were done and came back negative. Given IV fluids and IV antibiotic. Thought we might have to go to the ER, but decided to hold off and go to the clinic in the morning. Arrived home around 11:00. (Left brother Kyle at camp...he was enjoying the festivities)

Monday, July 8th. Still with considerable pain, vomiting.... some morphine was given...this did help the pain somewhat. Doc says if pain does not decrease will need to be admitted. Tried to get blood from med-a-port and both ports were unable to access blood?????? Not sure what this would be from. Had to have a chest X-ray and then abdomen X-ray taken. Both came back negative. Platelets were given. After the transfusion her med-a-port was checked again and now it had good blood return in both ports. Our prayers were answered. Doc says OK to go home since she is feeling somewhat better. Will hold off on Chemo for a few days. Don't need to return until Thursday. Hopefully she can get to Camp Dost soon for some FUN!!!

Wednesday, July 03, 2002 at 02:16 PM (CDT)

11th radiation treatment today....only one more to go!!!!

A friend kept us company today on our travels.....thanks Kristie. Amanda enjoyed having someone different to talk to. Uneventful day again. Friday is the last day of radiation and Dad should be taking her that day.

HAPPY 4TH!!!

Tuesday, July 02, 2002 at 03:32 PM (CDT)

10th radiation treatment.

Today went much better. Had chemo/radiation on time. Left GMC at 11:55---wow---that's a record. Decided to stop at"Wally World" on the way home. Shopping always helps!!!! Mom is learning how to give the chemo; so.... on Thursday we can stay away from GMC!!!! At first they wanted to send Amanda to Children's Hospital on the 4th for the chemo, but then it was decided it would be much easier to just have Mom do it. YEAH!!!!

Monday, July 01, 2002 at 06:23 PM (CDT)

9th radiation treatment.

I asked Amanda what she would like to say about today...."Today was a very boring day. I was not allowed to eat anything until 4:30. I didn't like it. It was too long."

Well, that about sums it up......we arrived at 8:30 to GMC because she needed to be fasting for her spinal tap. Blood work was drawn. Her hemoglobin was low, so she needed a transfusion of RBC's. These usually take about 2 hours to be transfused. There seemed to be a hold up in getting the blood. The transfusion started around 12:00, spinal tap was at 2:30, awoke at 3:30, radiation at 4:00, left hospital at 4:30, ate at McDonald's shortly after.
When arrived home immediately headed for the tubby for some relaxation. AAAHHHH!!!!

Tomorrow back to GMC for chemo and radiation. Should be a much shorter day.

Friday, June 28, 2002 at 09:06 PM (CDT)

8th radiation treatment today.

Another uneventful day at GMC. Not really anything new to report.

Spinal tap to be done Monday again.

Have a great weekend everyone!!!!

Thursday, June 27, 2002 at 12:22 PM (CDT)

7th radiation treatment today.

Two more pills to take---has a sinus infection. Otherwise doing fine. Uneventful trip to GMC.

On a side note, Nurse Debbie called the Webmaster and asked if we could change the background from Fuschia to Green? Gee, I wonder why she requested that Amanda? Of course, we wanted to keep Nurse Debbie happy, thus the change. Keep smiling Amand.

Wednesday, June 26, 2002 at 01:05 PM (CDT)

6th radiation treatment today.

Yesterday was another LONG day....arrived home around 6:00. She received chemo/radiation and complete her neuro/psych testing yesterday. She had a few bouts of vomiting, but seems to be doing better today.

Today, we arrived home around 1:45...after stopping at the "auction" in Lewisburg for some fries first...yummy!! We were escorted today by Pop-Pop. Thanks Pop-Pop!!

Some good news.....originially we were told her radiation was to be for 16 treatments. Today we were informed it is now only 12. So, half way there. YeeeHaaaaw!!!

Amanda still looks forward to soaks in the tubby...which is where she is right now. She enjoyed Pop-Pop's driving today...keeping track if he did not have both hands on the wheel or if he was speeding. I think the last "fine" tally was $300; charging $50 for each offense.

Monday, June 24, 2002 at 04:04 PM (CDT)

4th radiation treatment

Another long day at GMC.....I guess we should be getting used to them by now. Got home around 4:30....tomorrow should be the same.

The spinal tap went very well. She even stayed awake for it this time. The results showed one white cell and one red cell, which is good.

Radiation on the other hand was not quite as easy. She has to lay on her stomach. Which means laying on the medi-a-port site.... which is still very sore/black and blue. We had to go back a second time to the radiation dept. (after some food in her tummy) because she was so upset. But, she did it....she conquered the pain!!!!!

Just a little story to tell.......while waiting for the IV fluids to flow she played a joke on nurse Debbie. She was playing with green clay, which turned her hands green. Nurse Debbie came in to check on her and Amanda asked "Does the chemo make my hands turn green?" Well nurse Debbie had a look of confusion on her face saying that "No, green hands are not a side effect." At that point she made eye contact with Amanda and saw her big smile and knew she must have deliberately made her hands green. Ha! Ha! Then gave her a big hug.

Friday, June 21, 2002 at 05:24 PM (CDT)

3rd radiation treatment today.

It was a long day for Amanda. We left the house at 7:30 and arrived back around 4:15. She is sleeping right now. Her surgery went well---thanks for the prayers.

Monday she has a spinal tap and chemo starts again. This time around the chemo will last for 56 days. This is called the "consolidation" phase.

Hope everyone has great weekend. We are going to try a bit of camping. Keep cool. God's Blessings to you all!!

Thursday, June 20, 2002 at 03:55 PM (CDT)

2nd radiation treatment today.

Surgery for med-a-port insertion is schduled for tomorrow at 9:00. She will have her radiation early and then the surgery. She will be under general anesthesia. The surgery should take approximately one hour, with one-two hours in recovery.

A few people have been questioning what a med-a-port is. I will try and explain it the best way I can. It is a "central line" they place in her chest. This "central line" can be accessed to give meds into and take blood out of. For those of you who saw her PICC line in her left arm...it is similar to that but nothing will be showing on the outside; all the tubes are inside. And because all the tubes are on the inside there is only a slight chance that it will ever become infected.

She enjoyed swimming yesterday evening. A big THANKS to Uncle Dale and Aunt Sue.

Wednesday, June 19, 2002 at 01:35 PM (CDT)

GOOD NEWS!!!! Her MRI showed NO SPOTS!! Dr. Ramdas says the first MRI spots were secondary to her seizures and are now completely gone. Her white count from this morning is down to the normal range....so more GOOD NEWS!!!

She is also able to eat fresh fruits again (she loves strawberries) and can go swimming until her surgery on Friday.....so more GOOD NEWS!!!

Off for a dip.....ka-splash!!!!!

Tuesday, June 18, 2002 at 01:56 PM (CDT)

A bit of frustration is setting in. We were originially told her surgery (for a med-a-port) was to be scheduled for today; then Wednesday at the latest. However, no one seemed to be getting her scheduled. After many a phone call she is finally scheduled for Friday. This means Amanda will need to put up with more needle sticks; which she does not really handle very well anymore. It usually takes about three sticks to get a good vein these days. It also means postponing her chemo until next week at this point. Dave and I are concerned because her white count is up to above normal limits now and that is how things started back in May.

She finished her orientation visits to radiation oncology today. The first of 16 treatments of radiation will begin tomorrow to the brain and spinal areas. They fitted her for a body mold and a head mold. They clamp the head mold down so she can't move at all. She says it hurts a little, but she is handling it very well. She is such a trooper. She is also scheduled to have lab work done to check on her white cell counts. We should also know MRI and U/S results tomorrow.

I have decided not to wait on anyone else to schedule appointments, but to do it myself. Neuropsych was consulted on 6/3 to evaluate Amanda before radiation starts. Well radiation is starting tomorrow and still no appointment was made. Thanks to a sweet girl named Wanda she managed to get her in for Tuesday 6/25. This is a four hour testing session.

Thanks for checking in. Don't hesitate to call us for a more personal update.

Monday, June 17, 2002 at 07:54 PM (CDT)

MRI and U/S results pending. Lab results good today. Amanda in good spirits.

Saturday, June 15, 2002 at 08:41 AM (CDT)

Hi everyone and welcome to Amanda's Web Page!! Here is a brief list of how things started and what is expected this coming week.

5/10/02 - Diagnosed with ALL (acute lymphocytic leukemia).Confirmed by bone marrow procedure. Admitted to Geisinger.
5/11/02 - Results of spinal tap show that leukemia is in the CNS (Central Nervous System) Chemo started. On five different chemo meds.
5/17/02 - Spinal tap and bone marrow. Decreased leukemia cells found in spinal
fluid and bone marrow. The chemo is working.
5/18/02 - Discharged from Geisinger.
5/20/02 - Admitted to Geisinger for seizures. MRI showing two lesions on right
temporal occipital lobe. Will need repeat MRI in two weeks. Seizures
may be side effect of chemo drug--not sure at this time. CT scan of brain
negative for bleeding.
5/31/02 - Spinal tap shows clear fluid.
6/07/02 - Spinal tap shows clear fluid.
6/11/02 - Discharged from Geisinger.
6/12/02 - Markings for radiation done.
6/13/02 - Braces off!! Popcorn/bubble gum party!!

6/17 - Monday back to Geisinger for lab work, MRI of brain, U/S of kidneys, and another radiation orientation appointment. To have surgery for med-a-port insertion as soon as white count is up. Will also start more chemo and 16 days of radiation to brain and spine when white counts up.

Amanda is weak from seizures. Please pray for strengthening of muscles.

Friday, June 14, 2002 at 10:12 PM (CDT)

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