History

Journal History

Monday, November 1, 2004 8:06 AM CST

We will try to update soon. Until then, check out the above link to some more recent pictures of the kids.

God Bless!!!
The Knights

Thursday, July 15, 2004 3:17 PM CDT

I only hope that no one took me seriously when I said we would update soon :). I am so sorry for the delay. Thankfully, no news is good news this time. Sophie is doing well. She has had some trouble with her liver function test but they are keeping an eye on that. Her ALT was up to 288 but at her last clinic visit (7/6) it was down in the 120's. Hopefully, it will stay down. We are going weekly to have her CBC done here in Huntsville and we will have her liver function test done again next week. She goes back to Clinic 5 on August 3rd.

I don't know if anyone has noticed the date that Sophie was diagnosed at the top of the page. We are coming up on the 2 year mark since her diagnosis. That is so hard to believe. In some ways it seems like it was just yesterday and in other ways it has been an eternity (if that even makes sense). Our lives have changed in so many ways. We are so thankful for all that God has seen our family through and for all his blessings in the midst of this trial. If all goes well Sophie should be coming off treatment around the end of January or beginning of February. Please pray that everything continues to stay on track. Life since Sophie's diagnosis has become normal to us now (as sad as that is). Little things remind us that we have forgotten normal. For example, Sophie was not feeling well (due to her chemo) when we had her birthday party so even though she had fun she didn't feel up to playing. And a couple of weeks ago, we all went to IHOP for breakfast and Sophie threw up at the table while we were waiting for our order. Most times she feels well but occasionally those meds take their toll.

Believe it or not our little girl has turned 4 (6/13). She had just turned 2 when she was diagnosed and Liam had just been conceived. He is now walking well and getting into everything. What a stinker!!! And Sophie is no longer a baby but a precious little girl. What happened????? And thinking about time passing, Brad just had his 20 year class reunion. Yes, you heard right, 20 YEARS!!!! When did we get old???

We were in Florida (Amelia Island) on Sophie's birthday. Brad had to go there on business for 5 days and he decided to take us all. We haven't really traveled much with the kids (or at all) and we did not pick a good time to start. It was a "works" week for Sophie so she had just had her spinal and vincristine and was on a week of dexamethasone. She was very miserable while we were there and did not enjoy much. Her meds caused her to sleep fitfully and have nightmares and they must cause her some muscle pain because she complained constantly about being uncomfortable. Her and Liam's first trip to the beach was a bust since within 5 minutes after arriving Sophie got sand in her eyes and refused to stay. Liam did not enjoy it either. He was terrified of the sound of the water and just tried to hide his face in mine or Brad's shoulder. So we got to spend all of 15 minutes at the beach during our 5 day stay. Sophie did enjoy all the take out food she got to eat :). And she also admitted finally to enjoying the swimming pool. It may be a while before we take another trip and next time we will be sure it is not a "works" week. (I won't even go in to the 11 hours it took us to get home!!)

Well, I'll let that be all for now. Thanks for checking in on Sophie and our family and thank you for your prayers. I'll try to update more often (life just seems to get in the way sometimes).

God Bless!!
The Knights (Brad, Pam, Sophie and Liam)

Tuesday, May 25, 2004 3:45 PM CDT

Just wanted to let you know that we have not forgotten Sophie's journal. Hopefully, we will get a chance to update soon. Thanks for checking in.

God Bless!!
The Knights

Friday, March 12, 2004 2:12 PM CST

Hello!! We are finally updating! Sorry it has been so long. Time just seems to fly. Both the kids seem to be doing better since their bout with RSV. Liam ended up having to go back to the doctor with ear, eye and sinus infections. he had to get an antibiotic shot and take another round of antibiotics (augmentin). He finally started to perk up though. Sophie has struggled a little with a cough but has seemed to be doing better. Liam is still on a daily breathing treatment with Pulmicort (just as a precaution). Sophie came off the Pulmicort this week so I hope she will do fine.

Liam turned one year old on February 13th!! Can you believe it has been a year? It seems like yesterday we were bringing him home from the hospital. He is now into everything. To him "No, No" just means go faster and try harder. He went for his one year check-up on Feb. 23rd and he was in the 95th percentile for his height and the 25th percentile for his weight. Looks like he is going to be tall and slim just like his dad. (When we get Liam's 1 yr portraits back I'll try to have Brad post one but, I make no promises :-)).

Sophie went to clinic on the 24th of Feb. Jo-Jo went with me and helped out with Liam. Thanks Mom!! Everything went well with Sophie's check-up and her counts were really good (woohoo!!). I did talk to the Doctor again about the rash on her legs. I know he thinks I'm a nutcase because I came armed with pictures this time so he could see how red her rash got within a couple of hours after taking her methotrexate. He told us to try giving her some Benadryl before giving her the weekly dose of methotrexate to see if that helped. So far it seems to be working. Also while we were at clinic we got a special treat. We got to hear Amber sing and play her guitar. She sang some beautiful songs that she had written. My mom was in tears (as were a few of the nurses). Check out her webpage if you get a chance (there is also a recent picture of Sophie and Amber in Amber's photo album. Since we can't seem to get any pictures posted I thought you might want to check out hers :-). See the bottom of this page for the link to Amber's website.)

Some other good news is that Liam went to see his pediatric cardiologist on Tuesday and was taken off his Digoxin. We still have to listen to his heart twice a day to make sure he doesn't have any SVT episodes (if he does we have to take him to the ER). In a way it's a little nerve racking to be off the medicine because it kind of made you feel like you had a safety net. Please pray that he has outgrown his SVT. The doctor did find a small hole in his heart that has not closed up yet (these holes are present at birth and usually close over time). We go back when Liam turns 3 to have another look at that.

Well, I guess that is enough for now. Sophie goes back to clinic on the 17th for her "works" week. She will receive her spinal w/methotrexate, vincristine, and start a week of dexamethasone. Please pray that everything goes well.

Thanks so much for checking in and for your prayers.

Love,
The Knights (Brad, Pam, Sophie and Liam)

Friday, January 30, 2004 2:05 PM CST

Where should I begin?? It has been a really crazy time since our last entry. Sophie had bloodwork done in Huntsville on the 13th and the 20th. Her ANC was in the 2000s both times. On Sunday the 17th I noticed Sophie had a little cough and by Monday so did Liam. I didn't think too much about it (thought it was just a cold) since both kids were still active and happy but by Thursday Liam was acting fairly miserable. He was having trouble breathing out his nose and was throwing up due to congestion. I took them both to the doctor even though Sophie was still acting fine, just coughing. Well, turns out they both had RSV. I assume that the most probable place they could have picked this virus up is at the doctor's office on the 13th. Brad and I are such germ-a-phobes that we rarely take them any place else (especially this time of year). The doctor put them both on twice a day nebulizer treatments with Xoponex and Pulmicort. Liam was also put back on his Nasonex. We called and checked with Clinic 5 to make sure Sophie's treatment was okay for her. Brad and I both started coming down with it by the weekend. So there were no happy people at our house this past week. Monday night (26th) Sophie all the sudden started running a fever. We called B'ham and since she no longer has a port and she had good counts and we were scheduled for clinic the next day anyway, they told us just to come in as scheduled unless she got worse. Her fever got up to 102.2 that night but by morning was normal. She had no fever at clinic and checked out fine. So we don't know what was going on there but it made for a sleepless night. Also, we have been a little worried because when Sophie takes her weekly methotrexate she is breaking out in a rash on her legs and now on her elbows. The doctors don't seem too concerned but it is kind of unsettling to us. Pray there is no potential problem brewing there. Tuesday night Liam was fussing all night. We thought it was due to teething since he was gnawing on his hand. Again, I was pretty much awake all night. Wednesday morn he seemed fine except for the congestion, etc. with the RSV. Well, I noticed him pulling at his ear yesterday so I decided to take him in to the doctor this morning. Turns out both ears are infected. So now he is on an antibiotic too (he and Sophie are still on the nebulizer treatments). I'm going to need a computer program just to keep up with all the meds these two are taking!!!! Well, we pray that this will help our little man feel better soon. Sophie seems to be doing well except for her cough but the nurse assured us that we can expect about 3 weeks before they are completely over the RSV. Brad and I are on the mend too. I think its not so complicated for adults. We all just need a nice long vacation. (SERENITY NOW!!!!!)

Thanks so much for checking in. Please keep our family in your prayers.

God Bless!!
The Knights (Brad, Pam, Sophie and Liam)

Wednesday, January 7, 2004 1:32 PM CST

Hello everyone!! Hope you all had a Merry Christmas and that this is the beginning of a wonderful new year!! We had a nice holiday. On Christmas day Sophie kept hugging us and telling us that it was her "best Christmas ever" (I'm not real sure that she actually remembers the others so well but I'm glad she enjoyed this one so much :-)). Liam really seemed to enjoy his first Christmas too. I can't believe that in just a little over a month he will be a year old. We have come through so much as a family this past year.

Sophie has been to clinic a few times since our last update. I'll try to just hit the highlights to get everyone up to date. On 12/22 Sophie had her spinal and vincristine. We are always a little nervous on those days due to the probability of relapse in the spinal fluid and due to the fact that Sophie has her vincristine through an IV (which is a little riskier for burns). Thankfully, her spinal fluid was clear and she did very well with her IV. Now Brad, on the other hand, had a hard time. Since I was holding Liam, Brad held Sophie while they did her IV. Usually they have an IV specialist come in but I guess since it was near Christmas she was not available so one of the nurses, Kristin, did her IV. I think Kristin was a little nervous (the IV has to be in exactly right before administering the vincristine to avoid a severe burn) and it was really warm in clinic. (Note from Brad: If Kristin wasn't nervous I sure was. So nervous I think I forgot to breathe.) I guess the two things combined were affecting Brad who suddenly grew very pale and woozy. I had to take over Sophie while Brad tried to keep from passing out. Bless his heart!! Anyone who passed by our room would have caught quite a show as I was trying to hold Liam and Sophie and fan Brad while the nurses were trying to insert her IV and administer her chemo. But don't worry everything turned out fine. Brad recovered and Sophie's vincristine was administered. Sophie didn't make a peep. She just amazes us. Sophie started her week of Dexamethasone that evening, just in time to be feeling really bad and emotional at Christmas time.

The next Tuesday (12/30) Jo-Jo (my mom) went with Sophie, Liam and me to clinic so Brad could work. Everything went well. Sophie had her labs done and we found out about her new methotrexate routine. Dr. Shwartz was off so we saw Dr. Gratias. Sophie will now take one dose of Methotrexate (5 pills) once per week instead of the 4 doses in 24 hours (4 pills each dose) that she was doing every 2 weeks (did that make sense?). They also increased her 6MP from alternating 1 pill with 1/2 pill each night to 1 pill each night. Brad and I did her dose of Methotrexate on Wed. evening. It was really nice not having to wake her up in the middle of the night this time although, I kept feeling like we were forgetting something. Also, we do not have to remember to give her leucovourin 48 hours after her methotrexate anymore.

We went back to clinic this past Tuesday (1/6) so they could see how Sophie was responding to the change in her meds. Her ANC dropped into the 600's this time. Dr. Shwartz decided to drop her 6MP dose back to alternating between 1 pill and 1/2 pill each evening just to make sure her ANC stays above 500. Everything else checked out well. Before we left Sophie wanted to find Bethany (her nurse practitioner) and say bye but we couldn't find her. She did find Dr. Berkow though and gave him a big hug. We told him that Sophie had told us earlier that everyone really loved her at clinic :-)!! Everyone is so wonderful there and they have made Sophie feel special. We are so grateful that they are taking such wonderful care of our baby.

(Another note from Brad: Just wanted to add my thanks to the doctors and nurses at clinic 5. It really says a lot about you folks that Sophie knows she is loved and actually enjoys coming to a place where several painful things have been done to her. There's no way to express to you all how much your care has meant to our family. Thank you all so much.)

We will be giving Sophie her Methotrexate tonight and then she will go next Tuesday for bloodwork here in Huntsville. If everything goes well we will go back to clinic on the 27th of January. Thank you so much for keeping Sophie and our family in your prayers.

God Bless!!!
The Knights

Wednesday, December 17, 2003 2:41 PM CST

Quick update...Sophie went to clinic yesterday. She did so well having her blood taken. She did not even flinch. She is becoming such a big girl; although, it is a bit sad to think that she is used to all this now. I guess the reality is she doesn't even remember a life without blood being taken, spinal taps, and meds every day. Her ANC was over 1500. That is still really good. They did not increase her dose though. I don't think they want to chance her having another problem with really low counts. Again, she talked to everyone, telling them all about "The Wizard of Oz" (her new favorite movie) and about what she wants for Christmas. We also saw Amber and her mom. Amber says she is doing much better now. Amber and Sophie, both are scheduled for their spinal methotrexate and vincristine next Monday. Then it is a week of Dexamethasone (Oh, boy! Just in time for Christmas). Please pray that everything goes well for them both. The next week Sophie will be starting a weekly dose of Methotrexate instead of the every two week divided dose (she has been taking 4 pills every 6 hours for four doses - those middle of the night doses have been tough at times). We should find out more about that on Monday.

Thanks for checking in. Please remember all the children and families who are in-patient right now. This is a tough time of the year to be in the hospital for a child. God Bless!!

The Knights

Monday, November 24, 2003 10:20 AM CST

Sorry for the delay in updating. Sophie is doing well. She went last Tuesday (11/18) to B'ham. Her counts were very good (ANC over 2000, which is really a little higher than they would like). The really good news is that we made it through the relapse scare - hooray!! The other good news is that Sophie decided to open up on this visit and talk to everyone. I think some of her caregivers were in shock. And let me say that once the floodgates were open there was no stopping her. She put on quite a show. What a stinker!! We also got to see Amber and her mom. Please keep Amber in your prayers. She has not been feeling well lately.

Liam went for his nine month check-up last Friday (11/21). He is growing like a weed. He weighed 19 lbs 13.5 oz. and he was 30 inches long!! He also got his flu shot and a toe prick but he didn't cry (I don't think he was real happy about either one though).

Sophie will have her bloodwork done here in Huntsville next week then goes back to Bham on the 16th of December. She also has a "works" week coming up the week of Christmas. We will let you know how everything goes. Thanks so much for checking in. We hope everyone has a wonderful Thanksgiving. God Bless!!

Love,
The Knights

P.S.

We would like to say a huge thanks to the GL group at Merrill Lynch and their clients for the Christmas donation they made in honor of Sophie to the Leukemia Society. What a lovely thing to do and so many people will be touched by their gift.

Sunday, October 19, 2003 7:40 AM CDT

Okay, it has been a while since we updated. It's not that nothing has been happening, just that we haven't taken the time to update. Please accept our apologies.

Sophie's spinal tap and vincristine treatment went well although it was a long day for us all. It was almost 11:00 before Sophie got in for her Simon sedation. And even that early was because Amber graciously allowed Sophie to go first. Thanks, Amber! It was good to see you guys again.

Looks like we have gotten past the relapse. Hopefully that was just some virus or something keeping her counts down. Everything seems to be back on track now. We're keeping our fingers crossed. Thanks to everyone for the prayers and please keep them up.

Turns out that Liam caught the cold that Sophie had when we last updated. And at the perfect time too, just when I was going out of town. I had to spend one night in Atlanta for work leaving Sophie, Pam, and Liam all here with colds. Pam did not have much fun. But everyone is recovered now although Sophie has a cough and Liam is still a bit "snorty".

Sophie's counts were back up on the 7th so she got her divided dose methotrexate treatment on the 8th. A few days after her treatment she started running a fever and had a little diarrhea. Her temp got up to 100.9 under her arm so we called clinic last Sunday night just before we all went to bed. They wanted us to check it every hour or two and make sure it didn't get over 101. It hovered between 99.5 and 100.9 all night and then spiked to 102.9 on Monday morning. They asked us to give her some Tylenol and bring her to clinic. I had to go in to work for a little while so Pam got the kids ready and met me there and we headed to B'ham. They took some blood and her ANC was only 570 so we were expecting her to be admitted but they decided based on her bloodwork that her counts would probably climb instead of dropping more. So luckily we got to go home.

Sophie continued to run a little fever and have bouts of diarrhea for a couple of days, but seems to have recovered now except for a little cough. This is probably from the cold she had, but she says "it's from my chemo". :)

All is well with us here (knock on wood). Especially now that Sophie is off of the dexamethasone again and isn't quite so emotionally fragile. Those dexamethasone weeks are tough. Thanks to everyone for your continued thoughts and prayers.

Love,

Brad, Pam, Sophie, and Liam

Saturday, September 27, 2003 11:01 PM CDT

Pam took Sophie to the pediatrician's office here in Huntsville on Tuesday for her bloodwork. Her counts were down (ANC 750) so we were a bit worried that she might not be able to get treatment, but after the results were faxed to Bham, they called and told us we could give her treatment.

So Wednesday night, we started her methotrexate. It sure is amazing how waking up for just a few minutes in the middle of the night for her medicine can mess up a good night's sleep. :( Sophie did very well though. She had some nightmares Thursday and Friday night, but slept well last night and hasn't had much nausea this time. She does appear to have picked up a cold though. Maybe that is why her counts were a little off. We hope Liam doesn't get it. Because of all the problems he had with his adenoids, we're concerned that a cold might cause those to flare up again and give him trouble breathing.

Speaking of Liam, he started running a fever the evening we returned from clinic last time. A few days later he broke out in a rash. We're not sure what it was, but it looked like German measles or roseola. Since it was Saturday the pediatrician didn't need to see us as there was no treatment for it anyway. The folks at clinic told us to keep an eye on Sophie for fever, but nothing so far. And the rash went away and Liam is doing fine now too.

Aside from Sophie's cold, we are all well here. We go back to clinic on Wednesday for one of Sophie's big treatments. They will do Simon sedation and give her spinal methotrexate as well as IV vincristine. She will then do a week of dexamethosone. Thanks to everyone for your continued prayers.

Love,

Brad, Pam, Sophie, and Liam

Friday, September 19, 2003 8:01 AM CDT

Hello!! Just wanted to let everyone know that Sophie is doing well. She went to B'ham for her labwork on Tues. Her ANC was 1510 (Up a little from last week). Dr. Shwartz seems to be thinking that Sophie must have had some kind of infection although nothing showed up in any of the cultures they took. If she were relapsing you would expect her counts to stay low and hers are going up. YEA!!!! Sophie will have her labs done here in Huntsville this next Tues. We will go back to Bham on Wed., Oct. 1st for her spinal and Vincristine. She will also begin a week of Dexamethasone that week. We really appreciate everyone's prayers. We are truly grateful for your love and support.

Love,
Brad, Pam, Sophie and Liam

Tuesday, September 9, 2003 7:03 PM CDT

Great news to report today...Sophie's counts are up (WBC over 6000, ANC of 1200) and she can get treatment! Thanks be to God.

Of course there is no guarantee that she won't relapse, but it gives us a lot of comfort to know that she hasn't yet. They won't do a bone marrow aspiration next week that they would have wanted to do had her counts not been up. We will start her back on her 6-MP tonight and give her methotrexate tomorrow night (both at a little lower than her most recent dosage levels). We'll go back next week as they want to keep close tabs on her counts until they feel more sure that she isn't relapsing. We'll feel much better after she gets through a few more weeks of everything going well, but right now we feel like one burden has been lifted. This has been a very long week of worry. Of course we will still worry, but one thing at a time.

Sophie was a big girl at clinic. She held her arm out to be stuck for blood and didn't cry. She also made a picture of blue and orange dots for Dr. Schwartz since he's a Florida fan. :)

She even sat by Dr. Schwartz and let me get a couple of pictures. I will post them along with some other pictures as soon as I get a chance. Right now we all just feel like collapsing into bed. Except Sophie, who is just full of energy.

Thanks so much to everyone who has been praying for Sophie and our family. Please thank God for today's good news and continue to pray that Sophie's counts will do well and that she will not relapse. Pam may have more to add or update tomorrow, but I'll sign off for now.

Love,

Brad, Pam, Sophie, and Liam

Wednesday, September 3, 2003 3:29 PM CDT

Just a quick update. Sophie has been off her meds since my last update due to low ANC. We went to Clinic yesterday and her ANC was still very low so they did a bone marrow aspiration. Her bone marrow showed 7 percent leukemia blasts. They consider 5 percent still in remission and 25 percent is definitely leukemia. Sophie falls in the unknown range. They are still doing tests on her blood and marrow to see if they can find out what may be going on. We go back next Tuesday for another blood test. If Sophie's ANC is still low we will be going back for another bone marrow test. Unfortunately, we are forced to think that Sophie could possibly be relapsing. It is almost too much to bear to think about. Please pray that we will go in next Tuesday and her ANC will be up and we will find out all our worry was for nothing. I think the wait till we know something for sure is going to be extremely hard. Pray for strength for Brad and me. Even though we are trying to be positive, we are very worried. Sophie has done so well so far. It is so hard to think she may have to start all over again. Well, I guess that is all for now. Brad may want to update more later. Thanks for checking in and for your prayers.

Love,
The Knight Family

Thursday, August 21, 2003 11:07 AM CDT

Again, let me apologize for taking so long to update. Our lives have been fairly crazy lately. To keep this update from getting out of control I am going to go by date so things may be a little choppy.

Tues., July 22nd - Sophie's clinic visit in B'ham. Thanks to my dad for going with Sophie, Liam and me. Sophie checked out fine and she was given the okay to start her methotrexate regimen.

Fri., July 25th - Lana (Pam's sister) up to spend the night.

Sat., July 26th - Van broke down on the way to my cousin's baby shower. Thanks to Lana for letting Liam and me wait in her air conditioned car till Brad and Sophie arrived. Van had to be towed. Water pump burst.

Mon., July 28th - Van to be repaired.

Tues July 29th - Took Sophie to pediatrician's office. She had not pooped for 9 days and was in pain. Her regular ped. was on vacation so we saw the on-call ped. He said we had to give Sophie and enema and if that didn't work she would have to go to the ER. (Sophie has been on a daily dose of Miralax but she still wasn't pooping). I went home with the kids and began the enema on Sophie. It was horrible!!!! All of us were in tears - I never want to do that again!! Anyway, Sophie began having a bowel movement, but I also saw blood and I totally freaked. I called Brad and told him I was going to the ER. He met us there. They X-rayed Sophie and said, even after a huge poop, that she still needed to get out more. Poor girl. They gave her a suppository and took blood to check her counts (the needle slipped out of Sophie's arm and sprayed blood everywhere). She pooped about 3 more times before we left the ER. It was no wonder she had been hurting. We e-mailed Sophie's bloodwork to B'ham and found out she was neutropenic and we really should not have done the enema AT ALL!!! Her ANC (absolute neutrophil count) was 550. What a horrible day!!! Oh, I also lost my cellphone during all this. We never did find it.

Sat., Aug 2nd - Went to Sand Mountain to visit. Brad's mom had her 1st chemo treatment on Friday Aug 1st (her birthday). While we were there our van overheated. Thanks to Brad's dad for helping us out. We were able to make it home that evening. We just had to be careful about idling (something to do with the fan timer, I think).

Tues., Aug 5th - Took Sophie to the ped. for follow-up visit and for bloodwork (regular ped. still on vacation). Sophie had not pooped since visit to ER so the Dr. put her on a 3 day regimen of milk of magnesia and suppositories and increased her Miralax dosage. Brad fixed the van this PM. He also killed a copperhead snake that was in our driveway. I am absolutely terrified of snakes so my stress level just quadrupled.

Wed., Aug. 6th - Sophie's ANC was over 4000 - yea! So she was okayed to start her Methotrexate regimen tonight. I participated in a twice/year consignment sale here in Huntsville called Kids Kloset. I was able to get several things for the kids and I made some money myself so that really worked out well. Brad kept the kids while I was there and I think they really put him through the ringer.

Thurs., Aug 7th - I had a doctors appt. so my mom came and watched Liam (Thanks Mom!). Sophie went with me. This was the 3rd day of her milk of magnesia regimen and she still was feeling a little puny and hadn't started pooping well yet. Well, that all changed at the doctor's office. She pooped twice before I was called back. Then while we were in the exam room waiting she had a *huge* poop. It was everywhere and when the nurse practitioner came in I was in the process of taking all Sophie's clothes off. It was a mess. Thankfully the NP offered to go to the van and get some more clothes for Sophie. I went through all my baby wipes, all their wet wipes, and half a roll of paper towels. It was horrible. But, thankfully Sophie was feeling much better so I'm glad it happened even if it was a little embarrasing. (Oh! One funny aside. While we were in the waiting room, Sophie tried to make sure that this was a doctor's appt for me and not her. When I assured her it was she proudly announced, to everyone's amusement, "I sure am glad they won't be messing with *my* hiney today!!).

Wed., Aug 13th-Fri., Aug 15th - Brad had to go to Kentucky for work. I owe Dad a huge thanks for staying with me and the kids while Brad was away. We enjoyed our time with my dad but, we really missed Brad and were so thankful when he made it back home Friday evening safe and sound (although, extremely worn-out).

Sat., Aug 16th - The whole family went to Costco. While Brad was checking out, I took the kids to sit at one of the tables in the food court area. After Brad finished and joined us I stood up and put my diaper bag in the buggy. I guess we both took our eyes off Sophie for a second. She was obviously trying to get down from the bench she was sitting on and I guess her leg caught and she fell and her forehead hit the concrete floor. I heard her crying and turned to see her on the floor. My heart fell. The ladies in the food court brought us ice for her head and we watched her closely the rest of the day but after about 30 min of crying she was back to normal except for the huge lump on her forehead. AAAAAAAAARGGHHH!!!! But she still wanted to go to the library on the way home. :)

Mon., Aug 18th - Liam's 6 month checkup was today. He weighed 18 lbs 4.5 oz (75th percentile) and was 28.75" long (95th percentile). He also received his shots (I hate those) and did very well. He is rolling and scooting all over the place but has not started sitting up yet. Oh! and he thinks his sister is a hoot. He loves to just sit and watch her and laugh. I'm sure she will never have any peace once he can get around well.

Tues., Aug 19th - Clinic. Sophie's ANC is in the 500's again (neutropenic). She was taken off all her meds this week and will not be receiving her Methotrexate. We will go back to Clinic next week to see if her counts have come up. Another part of her bloodwork (eosinophils?) was elevated. They don't really know why yet but are assuming it may be some sort of allergic reaction. They will also be watching this.
Please pray that everything is normal next week. Although I'm sure Sophie is enjoying a week off from all her meds it is important to get back to treatment soon.

Well, I know you will be glad to hear that about covers it for now. Thanks to all of you that check in on Sophie's progress. Your thoughts and prayers are truly appreciated. Please continue to remember Brad's mom also. She has her 2nd chemo treatment tomorrow morning.

With love,

The Knight Family

Friday, July 11, 2003 2:48 PM CDT

Hello!

Just a quick update to let everyone know that we have not forgotten our journal. It is just hard to find the time to update.

Sophie is doing well. I don't think we have updated since her spinal. Her fluid came back clear and everything went well with the vincristine being administered via IV. The week of dexamethasone went better than expected but she was still very moody and she ate everything in sight. Sophie went back to B'ham the next Tues. for her bloodwork. I want to thank my mom for making the trip with us. We really appreciate it and it allowed Brad to work that day.

I took Sophie to her pediatrician's office Tues. of this week for her bloodwork. Clinic 5 called and gave us the okay to do her methatrexate. She threw up this morning but after a dose of Zofran she has been doing better. She and Liam are both sleeping now, hence the journal entry :-).

As soon as Brad gets the time he will post new pictures. I know, I keep promising. Hopefully, it won't be much longer.

Please keep our family in your prayers. We still need them. We also ask that you remember Brad's mom in your prayers. She was recently diagnosed with breast cancer and underwent a double mastectomy this past Tuesday. Pray for her complete healing and for strength to get through these tough times. Thanks!!!

Love,
The Knight Family

Monday, June 16, 2003 9:15 AM CDT

Hello! Just wanted to do a quick update since it has been a while. Hopefully, we will give a more complete update this next weekend.

We have had quite a month! Brad's birthday was June 2nd. I will be kind and not reveal his age but, let me just say he is only 3 years from 40 :-). June 9th was our 13th wedding anniversary. I can't believe we have been married that long. Sophie turned 3 on the 13th. My little baby girl is growing up. Liam turned 4 months old on the 13th. Where is the time going (and what's with all the thirteens)?!!

Brad has been really busy at work also. He had to work all weekend so he didn't get to enjoy father's day at all. I hope that he knows what a wonderful husband and father we think he is.

Sophie had her bloodwork done here, in Huntsville, this past Tuesday and then she started her divided dose Methotrexate on Wednesday. She is doing well. We go this Wednesday (6/18) for her spinal and her Vincristine. She will also start a week of dexamethasone. Oh how we dread that. Please pray that Sophie's spinal fluid is still clear and that she stays in remission.

Liam went to the ENT on Thursday. He is breathing better and not snorting as much. We don't go back unless he gets bad again. Then we will probably have to consider removing his adenoids. Hopefully, that won't happen (or at least wait till he is older). I am taking him for his 4 month checkup this morning - dreading the shots!!

Well, hopefully that will catch everyone up for now. We will try to update this weekend about Sophie's trip to clinic. Thanks for checking in on her.

Love,
Pam (Brad, Sophie and Liam)

Monday, June 16, 2003 9:15 AM CDT

Wednesday, May 14, 2003 1:33 PM CDT

Well, we are still doing our part to support the medical community :-). We took Sophie to Birmingham for her clinic visit on Tues (04/29). It was a normal visit. Sophie's counts were good and she was given the okay to start her methotrexate. Liam slept throught the whole visit.

On Friday (05/02) I took both kids to see Dr. Cochran (their pediatrician). Sophie's feet have been peeling and red and Liam has had a couple of reflux episodes (including one large projectile vomit) and has been snorting and coughing. Sophie's turned out to be a condition commonly called sweaty hands and feet - where her sweat is irritating her skin. Worried that this could be a potential source of infection, Dr. Cochran put her on Elidel ointment. Liam seemed healthy but did have swollen nasal passages. She put him on Nasonex to see if that would help. Well, we made it till the next Thursday (05/08) before I had to take Liam back in. He was just snorting and congested sounding. He would get to snorting so sometimes that he would have trouble catching his breath. Dr. Cochran referred us to Dr. Castillo, an ENT. After looking in Liam's sinuses with a scope (very traumatic for Liam and me), Dr. Castillo informed us that Liam has enlarged adenoids. He said for us to continue with the Nasonex and to come back in 4 weeks unless he starts having "failure to thrive" or starts having more difficulty breathing. It is possible he will have to have his adenoids removed. I can hardly bear listening to him snort and snuffle. I feel so bad for him but he's still smiling and in good spirits. He is also sleeping very well (in bed by 9pm and up at 4:30 or 5am). Dr Cochran also put Liam on Zofran for reflux. I think this may be an example of the cure being worse than the disease. He hates!!! that stuff and it is usually a 15 minute ordeal to get any down him (& he more than likely will spit it right back up anyway) and then get him calm. Poor guy.

We went to Sand Mountain Saturday to see our moms and wish them a happy Mother's Day. We hope all the moms out there had a great Mother's Day. God bless you all!

Sophie had her blood taken here, in Huntsville, yesterday and Clinic 5 has already called to let us know everything looked good and she could go ahead with this round of Methatrexate. We will start that at 7:00 tonight. Please pray that she continues to do well.

Sorry we haven't added new pictures yet. We just can't seem to find the time. We will let you know when we do get them up.

Thanks for checking in!! Until next time...

Love,
The Knight Family

Friday, April 25, 2003 12:46 AM CDT

I am so sorry that we have taken so long to update. Fortunately, this time, no news is good news.

Sophie is doing well. She went Monday, April 7th to have her bandages removed from where they did surgery to take out her port. After driving 2 hours, we saw a nurse for about 1 minute. We didn't even go back to a room. She just removed the bandages in the hall and sent us home. So that was a four hour drive for something that her pediatrician could have handled for us - oh well! Sophie's surgery site seems to be healing well.

We took Sophie to Dr. Cochran's office last Tuesday (April 15th) for her bloodwork. Then Wednesday we started her around the clock Methotrexate. Everything went fine. We have noticed the past three times that we have given her her Meth. that around 7 days afterwards she seems to go through a phase of not feeling well. Especially in the mornings. She will do things like lay down in the kitchen floor while I make breakfast, or lay on the stairs. One day while I was making breakfast Sophie disappeared. I searched the whole house for her, calling her name, and just as I was beginning to freak-out I found her curled up in the armchair in the living room. I usually give her some Zofran when she is acting like this and the episodes don't generally last very long, thank goodness. I hate to see her not feeling well.

One of the hard parts to me of having a child with ALL is always wondering if any little thing is a sign that she is relapsing. Every little bruise she gets sends shivers up my spine. Anything out of the ordinary is cause for alarm. And not just with Sophie; I worry about Liam, too. At one of Liam's check-ups I asked Dr. Cochran about something that had been concerning us with him. After telling me he was fine and not to worry, Dr. Cochran then said "but I guess you no longer have the luxury of feeling like that can't happen to my child because now you know that it can."

Between Sophie and Liam we seem to be averaging around 2 trips to the doctor's office per week right now. Liam is still seeing the specialist about his jaundice. He is doing great though. His last bili count was at 1.5. I thought we might be released but Dr. Laney wants to be on the cautious side so we go back in July to make sure he is doing okay. By the way, Liam weighed 14 lbs and 5 oz this past Thurs. (10 weeks old). Also, at Liam's 2 mos. checkup, Dr. Cochran called Dr. Israel with Liam's weight,etc. and his dose for Digoxin went up. He seems to be doing well. Hopefully, his SVT will be gone by the time he is a year old. Please pray that is what happens.

We all had a wonderful Easter. We went to Sand Mountain to be with family and we had a great day. We went to church at Sardis and Sophie was very well behaved (and in fact, she had to point this out during the final prayer by saying -out loud- "I was very quiet, daddy"). Of course, Liam didn't make it through the service but that's to be expected.:-). Sophie really enjoyed hunting Easter eggs and visiting with everyone.

Sophie goes to B'ham Tues. for her next checkup. We are so grateful that they are allowing us to do some of her bloodwork in Huntsville but I have to admit a month between visits to her oncologist sometimes makes me a little nervous. Please pray that everything goes well.

I'll close for now. We will try to update more frequently. Hopefully, Brad will be able to get more pictures up soon too. Thank you for your prayers and don't forget to sign Sophie's guestbook - that is a real source of encouragement for us.

Love,
Brad, Pam, Sophie and Liam

P. S.

Please visit these pages if you have the time. I'm sure they would also appreciate your prayers and encouragement. Thanks!!!

http://www.caringbridge.org/al/amber/
http://www.taylorwatts.org/
http://www.caringbridge.org/al/janiesims/

Sunday, April 6, 2003 6:43 PM CDT

Wednesday morning started bright and early for all of us at 2:50 AM. We got up and got ready and hit the road by just before 4:00 to get to Birmingham for Sophie's surgery to remove her port. The trip down was uneventful as there was little traffic on the road. We grabbed a couple of biscuits at Arby's for breakfast while Sophie and Liam slept and then headed over to Children's to One Day Surgery.

When we arrived, Sophie wanted to play with all the toys and stuff they had in the waiting area, but we had to change diapers, sign in, and have her labs done so she wasn't able to do that before going back to a room to wait. We told her we could do it afterwards. This would become important later.

Everything went pretty much like clockwork. Sophie rode in the Little Tykes cars in the hall while waiting for the labs and stuff. Then they came and gave her Versed to calm her so she wouldn't be upset when they took her away to surgery. Versed is also supposed to have amnesiac effects that block memories. Based on some experimentation with Sophie clear memories of a cup on my head prior to her going back for surgery, those amnesiac effects are somewhat overrated. ;) But it did keep her calm and she did fine.

The surgery itself only lasted a few minutes, but they kept her probably an hour waiting for her to awaken. We heard her in the hall on the way back shouting "I want my mommy!"

She drank two cups of apple juice and the nurse talked to us about her bandage and stuff and they let us go to clinic. Sophie definitely was not feeling too well after the surgery. Hard to know how much of it was the surgery and how much was the fact that she spent the last week on dexamethasone. She (as well as mommy and daddy) is an emotional wreck after being on the dexamethasone for a while.

Anyway, things were going great and we went down to clinic where Sophie suddenly remembered that she had not got to play in the waiting area up in day surgery. In a rush to try and get to clinic before lunch, we had forgotten about letting her play in the waiting area. But Sophie had not forgotten. She kicked up a fuss and started crying at the top of her lungs "I want to slide on the slide!" We were the life of the party for a few minutes in Clinic 5. :)

On the bright side, they already had her labs so we got through pretty quickly at clinic. Dr. Schwartz examined her and everything was okay for us to give her chemo Wednesday night. We scheduled our next clinic visit for April 29th, gathered everything up and headed back upstairs to let Sophie play for a few minutes. She had a ball. She had so much fun playing that we were worried she might open up her wound or something, but she did great and didn't even give us a hard time when we had to leave.

The trip home was not quite as uneventful as the one in the morning. We hit the drive-through for some lunch while the kids slept and everything was cool. But then the sun started shining in on Liam on the way home and he got extremely upset by the time we got the van stopped to correct the situation. But he did fine other than that. He did great for only being seven weeks old.

We got home about 3:00 and got a little rest before getting things ready for her chemo. We gave her that at 7:00 PM, 1:00 AM (that's the hard one), 7:00 AM, and then Pam gave her the last dose Thursday at 1:00 PM. She had some tylenol for pain Wednesday night and Thursday, but hasn't needed any since then. We gave her the leucovorin Friday night and Saturday morning. She's done very well and is almost back to her normal sweet self as she took her last dose of dexamethasone Wednesday. We are glad that stuff's over until June.

Sophie has been feeling well, and hasn't had much bleeding from the surgery. If it's hurting, it isn't slowing her down. She's been very active, both for good and bad. :)

Some good news is that Sophie pooped in the potty again this week. Being diagnosed with ALL threw a monkey wrench into her potty training, but she's starting to take an interest in it again now. It is somewhat difficult for her to potty train with all the activities we've had going on and I guess until she's fully trained to it, potty training will be difficult for mommy and daddy too. :)

We go back down to see the surgeon tomorrow afternoon and hopefully won't have to go back until the clinic visit on the 29th.

Oh yes, I almost forgot that Liam laughed for the first time yesterday. And again this morning. He's been smiling for a couple of weeks now and has now started adding laughs to the smiles.

Thank you for all of the thoughts and prayers. Please continue to remember Sophie and please continue to remember Taylor Watts and his family as they go through the transplant.

God bless you all,

Brad, Pam, Sophie, and Liam

Saturday, March 29, 2003 9:56 AM CST

Well, we're three days into the dexamethasone and it's already affecting Sophie. She's already eating like a pig and usually planning her next meal while she eats. She's also feeling bad. The medicine seems to make her emotionally fragile and she vacillates between very happy and very upset and can change at the drop of a hat. We knew that this was not going to be a pleasant week though.

We got a call yesterday from Bethany and she told us that Dr. Berkow and Dr. Schwartz had decided not to replace Sophie's port but rather just to remove it. If all goes well and she doesn't relapse, Sophie will only receive vincristine and spinal methotrexate every three months. So that will only be about seven more times and she did well with the IV this past Wednesday so we hope she won't need her port. And just removing it will mean one fewer surgery and anesthesia for her as they won't need to remove it at the end of treatment. And best of all, she won't be bothered by it all the time. We asked her about what she wanted to do. She said she didn't know. But later she came up to Pam and said she'd like to just get her treatment in her hand and not have a port. We know she doesn't like it very much. It's always in the way and gets bumped and bruised. And she's very protective of it. So hopefully this will be the end of all that.

Sophie woke up pretty happy this morning considering she had a bit of a rough night. She's taking all of her medicine like a big girl. All is well so far today.

Well, I guess I need to get busy. I'm supposedly watching Liam while Pam gets ready this morning. Right now, watching him consists of letting him swing in his baby swing while I do this update. :)

Everyone please remember Taylor Watts and his family as he is in the hospital for his transplant. He and Jim and Kim will be in the hospital for one to three months(!), so they really need our prayers. You can visit Taylor's website here.

More updates to come...

Love,

Brad, Pam, Sophie, and Liam

Wednesday, March 26, 2003 6:27 PM CST

We just finished up a long day at clinic. Our day started bright and early at 4:45 AM. We rolled out and started to get ready. When we started to put Emla cream on Sophie's port we noticed that the skin over her port had an ugly looking sore/scab on it. She's had bruising there lately, but this looked pretty ugly so we decided not to put cream on it and wait until we got to clinic to let someone see it first. So we rushed to get ready so we could get there early.

[Fyi...Sophie's port is a little metal and rubber chamber installed under her skin on her left side up under her arm. It has a line running up to one of the larger veins in her neck. It's used for injecting her chemotherapy drugs and drawing blood.]

We arrived at about 8:25 and after listening to Liam's heart and giving him his medicine I took Sophie in while Pam nursed the baby. Remarkably, Liam slept the whole way down. I took Sophie in and Richard and a couple of nurses took a look at her port. They thought she had a skin infection but thought we might be able to access it from an angle, so we went ahead and put Emla cream on it and on her back in preparation for her lumbar puncture. Then I took Sophie over to the lab where they stuck her arm for blood. She did really well.

When we got back, Pam had brought Liam into clinic and we went back and they got Sophie's vital signs and weight and height. We waited a little while. While we were waiting, we met Cameron Samanie(sp?) and his dad. Cameron is about the same age as Sophie and was diagnosed just a few weeks ago. He also has a baby brother about the same age as Liam, so their family is really going through it with a newborn during the early phase of treatment. Please pray for their family. We also got to see Jaylen Smiley and his dad. Jaylen was wide open and full of energy as usual. He is a real cutie.

We went back to see the doctor, who was Dr. Crawford today as Dr. Schwartz was out during the morning and Dr. Berkow was out of town. He looked at Sophie's port and decided it shouldn't be accessed. So they called an IV specialist nurse, Angela, to put an IV in Sophie's hand for her vincristine and Simon sedation. The vincristine is a bit of a concern going into a regular IV instead of her port as it can cause severe burns if it gets out of the vein onto skin or other tissues.

While we were waiting for the IV, Dr. Schwartz arrived and took a look at Sophie. While he was looking at her port, he and Pam noticed that the skin was open all the way to the port itself. You could see the metal. We are very thankful that Sophie's port is not infected or anything. That could happen since it's open and exposed. So they scheduled us to go up to the 5th floor and see Dr. Baldwin, the surgeon who had installed Sophie's port.

The IV was delayed while Dr. Schwartz examined Sophie, so we were a little later getting into Simon sedation for Sophie's spinal methotrexate treatment. When it was time, Sophie did great and hardly cried at all. The vincristine went in with no problems. After a little while longer, we went up to the second floor for Sophie's procedure. This was about 1:00 and we hadn't eaten lunch yet.

After her procedure, we went back down to clinic and Sophie got to eat some Dora the Explorer cookies. Then we went up to see Dr. Baldwin. The short of it is that her port is no good any more because the skin has eroded over it so it will have to be removed. They will discuss it with Dr. Berkow to see whether it's best to install another port or just remove it and use regular IV for the remainder of her treatment. They probably will install a new one. So next Wednesday morning at 7:00 Sophie goes in for surgery to remove her port. Which unfortunately means a couple of new wounds and new scars for our little baby.

By the time we got Sophie's IV removed and got on the road, it was 3:00. We stopped to eat and let Pam feed Liam (who did great on the trip and was no trouble at all...knock on wood) and both kids slept all the way back home afterwards. We also stopped and let Sophie pick out a video because she was so brave at clinic. She's really something else. Other than being so long and the bad news about Sophie's port, it was a good day. All the nurses fussed over Liam since it was his first trip to clinic. But we are all very tired now, so we're going to give the kids their meds and hit the hay.

More updates later...

Love,

Brad, Pam, Sophie, and Liam

Sunday, March 16, 2003 7:18 PM CST

As our friend Amber Luchterhand has pointed out to us, it has been a long time since we've updated the page. My apologies.

Let's see, since our last update Sophie and I made our first trip to clinic without Pam. We didn't really want to get Liam out and expose him so soon. Plus we weren't sure how he'd tolerate a 2-hour drive. Sophie did very well considering. She did cry out "Mommy!" when they stuck her arm, but dried up quick and did very well overall. Better than I did. :) I don't see how Pam manages to take care of just Sophie, much less Sophie and the baby every day. Either one of them can wear me out right quick.

The trip to clinic was pretty uneventful but long. Since Sophie was so patient, we stopped and rented the new Veggie Tales movie on the way home. She enjoyed that. She also made me get her some Flintstones vitamins. For some reason she has decided she needs to take vitamins. I asked Dr. Schwartz about it and he said it wouldn't hurt her so we got her some. She took one for about two days and pretty much lost interest. Figures. :) We did her chemo treatment on Wednesday and it went fine.

We also made a couple of trips to the doctor with Liam. His bilirubin level finally started down (14.1) and his color is looking a lot better. We go back for what we hope will be one final test on Friday. But he's doing great. Eating, sleeping, and soiling diapers...just what a baby is supposed to be doing. :) He has been sleeping very well at night. A couple of nights Pam needed to wake him up to nurse him or else pump. But lately he wakes up for at least one feeding. He has been growing. I think he was 10 pounds 11 ounces last time.

I think Sophie has adjusted pretty well to having a baby brother. She hugs and kisses him and tries to help Mommy take care of him. Once when Pam called Liam "precious" Sophie said "I'm precious!" Then she said that Pam could call Liam "cuteness". So Sophie is "precious" and Liam is "cuteness". At least when we can remember to keep that straight. Sophie helps with that. :)

Okay, I just had to run upstairs for a couple of minutes. Sophie was doing something she shouldn't and had fallen down and bumped her head. (She just came over and told me don't forget to write about her bumping her head on the carpet.) Of course Liam was crying while Pam comforted Sophie. And then when I picked him up, he pooped his diaper. No wonder we don't update this page very often. ;)

Sophie falling does remind me of a previous incident from a couple of days before we went to clinic. Pam had gone dowstairs to clean the kitchen for a couple of minutes and I was watching Liam while sort of trying to keep one eye on Sophie. I turned around to check on her and noticed she was gone. Just as I started to call out I heard "thump-thump-thumpety-thump-WHACK." Neither of us saw it happen, but Sophie had fallen down the stairs. She had a bump on her head and had whacked her jaw pretty good as well as her hip and ankle. We were in a tizzy for a few moments when we saw her lying in the floor at the foot of the stairs crying. After she calmed down she told us she was all right. We checked her over and she seemed okay. She insisted that she was fine when we asked if she needed to go to see the doctor. After a little while she described the whole thing to us complete with hand gestures. She said she had been running, which is one of her no-no's that she knows she isn't supposed to do in the house. I mentioned the fall to Dr. Schwartz and he didn't find her to be suffereing any ill effects. She has been walking more and holding the rail when she goes up and down the stairs.

We have a busy couple of weeks ahead of us. Sophie gets chemo this week so she'll need to go to have her blood taken here in town on Tuesday. Then Liam goes to the doc on Friday and back again for a followup on Monday of next week. Then on Wednesday we go down to B'ham for another treatment. This one will be intrathecal methotrexate so she'll be sedated for her spinal tap. She'll also get an intravenous dose of vincristine and then when we get home we'll get to start a week of dexamethosone. We really dislike that stuff. It makes Sophie feel bad.

She's been doing great overall though. We are very grateful for her progress. We just hope and pray that it will continue.

Oh, and here are a few more pictures. Hopefully more to come soon, Amber. :)

Love,

Brad, Pam, Sophie, and Liam

Sunday, March 2, 2003 8:37 AM CST

Okay, so much for daily updates. :) Sorry about the delay. As you can imagine, we've been petty busy lately.

Liam's bilirubin levels didn't go down as we had hoped. In fact they went up just a little more before starting back down again. We went back to the doctor on that Thursday and Friday and the Hug Center sent a nurse out to check his levels on the weekend and Monday. Since it didn't go down and even went back up a little on Monday, we went to see Dr. Cocran on Tuesday. She decided to run some more blood tests to make sure nothing pathological is going on. They had to draw blood from both of his arms and that's pretty tough on a little fella...and on the parents. He screamed bloody murder the whole time and it probably took 10-15 minutes for the whole thing. Sophie took it all in stride, but it was stressful for the rest of us.

The results of the tests were good. We went back on Wednesday afternoon at 5:00 for another level. It wasn't down any so Dr. Cocran decided she wanted Pam to stop breastfeeding and pump until Friday morning while we gave Liam formula. She wanted to make sure that an enzyme in breastmilk wasn't preventing the breakdown of the bilirubin. Pam was not happy as she was worried that she might not be able to continue to breast feed him. It was a bad day for me too. "When momma's not happy, ain't nobody happy." :)

In between trips to Dr. Cochran's office, we went Thursday morning to the cardiologist for a followup on Liam's SVT. He checked Liam out and did an ultrasound of his heart and said that everything is fine. He wants us to update him with Liam's weight in a couple of months so he can adjust the dosage of the digoxin if necessary. We'll go back in about a year to see about taking him off the medication. After that appointment, I had to drive to Cullman for a software installation. This was a very busy week.

Friday morning we went back to Dr. Cochran's office for another bilirubin check. It had not gone down much and was still at 17.5. She checked with Dr. Laney, a pediatric gasteroenterologist, again to make sure we aren't missing anything. He seems to think it will just be a stubborn case of jaundice and that we can "chill out". :) So Liam went back on the breast and is off the lights and we go to see Dr. Laney on Monday morning. Then we go back to see Dr. Cochran next Friday for another bilirubin level assuming nothing changes between now and then. But things are looking up now that he's off the bili bed and back on the breast. He was a little constipated as a result of the formula I suppose, but seems to have "worked that out" now. We're all getting more sleep than we were.

Since our upcoming week wasn't already shaping up to be busy enough, I'll be taking Sophie down to Birmingham for an exam on Tuesday afternoon. If that goes well, we'll give her another round of chemo on Tuesday or Wednesday.

Sophie is taking things really well so far. She sometimes gets a little upset and doesn't understand why she doesn't have 100% of mommy's attention whenever whe wants it, but she's been very sweet with Liam and has often been helpful. She likes to hug and kiss him and hold his hand. We can only hope that they get along so well long term. ;)

I'm sure I left something out, but that's about all I can think of right now. Please excuse any typing or grammar errors. I was typing one-handed for part of this while holding the baby and had to pause for a few interruptions. :) And speaking of interruptions, Sophie wants me to play now so I'll sign off. Hopefully, it won't be so long before the next update.

Thanks to all of you for your kindness, thoughts, and prayers.

Love,

Brad, Pam, Sophie, and Liam

Wednesday, February 19, 2003 5:10 PM CST

Well, we survived our first night home with the new baby. :) Unfortunately, Sophie was the only one in the house who got much sleep. Liam may have his days and nights confused. He slept all day yesterday, but woke up about midnight and spent most of the night looking around or fussing. Pam didn't get much sleep at all, maybe 3-4 hours total.

We got up this morning and went to Liam's 8:50 appointment with the pediatrician. We were just barely late. Dr. Cochran was out of town this week, so we saw Dr. Upchurch. Sophie got to watch them stick Liam's heel for his bilirubin test. I think she prefers watching over being the patient.

Dr. Upchurch said his bilirubin level was up to 17.9 today, probably because he had been under more light in the NICU at the hospital than the bili bed here at home. He didn't seem too concerned that it went up and just said to keep him on the light and keep him well fed. He also applied some silver nitrate to Liam's belly button because it was bleeding just a bit. Surprisingly, his umbilical cord already fell off.

We listened to Liam's heart and gave him his medicine when we got home and Pam and the baby went upstairs to sleep. They both got a good bit of sleep and Sophie got a really good nap snuggling up to her mommy. I joined them after some lunch and got about an hour and a half sleep myself. I think Sophie was the only one who actually felt better after the nap. :)

Liam has slept all day except when he has been feeding, so I don't know what that means for us for tonight. Probably no sleep again. We'll see.

Sophie's counts were fine from her blood test yesterday, so her caregivers told us we can go ahead and give her chemo tonight. On the "bright" side, we'll probably already be awake for her 1:00 am dose. ;)

We go back tomorrow morning to check Liam's bilirubin levels. Hopefully they will be down. He's been on the bed a lot today and has also pooped a lot, which should help get the stuff out of his system. Getting him off the bed soon would be a big help to Pam I know, as I plan to return to work tomorrow. We'll just have to see how it goes.

I'll try for another update tomorrow.

Love,

Brad, Pam, Sophie, and Liam

Tuesday, February 18, 2003 9:12 PM CST

Sophie's baby brother is HOME! It was such a joy and a relief to bring Liam home from the hospital. On the ride home Sophie said "it sure is nice to have a baby brother." Liam's bilirubin level is still pretty high at 15.9, but the 5th day is supposed to generally be the peak, so maybe his will come down soon. For now he is having to spend most all of his time in a bili bed with the UV light just like Sophie did when we brought her home. Liam seems to be taking it a whole lot better than Sophie did though. She raised a ruckus about it practically the whole time she was in the bed. Liam just relaxes and sleeps and hardly makes a noise unless he wants to eat. Pam nudges him every so often to make sure he's still alive. :)

We're just resting right now. I hope Pam can get a good bit of sleep, but she'll probably wake up every few minutes to check him if I guess right. We go for his first appointment with the pediatrician tomorrow morning at 8:50. I guess they will check his level then.

While Pam went to check on Liam this morning before he came home, I took Sophie to have her blood checked to make sure she can have her chemo tomorrow night. They faxed the results down to Birmingham. They had a bit of a hard time finding the vein and had to stick Sophie's arm twice. She was very brave though and didn't cry much at all. She got a Dora the Exlporer sticker as a reward. So if the blood tests were okay, I guess we get back to Sophie's routine tomorrow.

Oh well, I think we're going to hit the sack. Thanks to all for your thoughts and prayers.

Love,

Brad, Pam, Sophie, and Liam

Monday, February 17, 2003 1:50 PM CST

Pam, Sophie, and I left to see Liam this morning a little after 8:00. We were unable to get through to the NICU staff on the phone at the number they had given us. They have shift change from 6:00 to 8:00, but we should have been able to contact them after 8:00 so we were a little nervous about what to expect when we got there.

However, Liam was fine. They were just hooking him up to the Holter monitor when we arrived. The Holter monitor will monitor his heart for 24 hours. His bilirubin level had only dropped from 16.5 to 16.2 though. Dr. Dworsky ordered a blood test to check his hematocrit level and when Dr. Novak made her rounds later this morning, she said that checked out okay so it's just a matter of waiting for him to work out the jaundice. If his biliruben level drops enough, they may let us go home tomorrow with a bili blanket.

We came home to get some lunch and for Pam to get some rest and for Sophie to get a nap. Unfortunately, Sophie isn't napping, so I'm probably going to have a handful later today. :)

He is able to take breast milk now even though they don't want him breast feeding because they want to monitor how much he is getting. So we're going back to the hospital at 3:00 to feed him and spend a little time with him. More uopdates later...

Love,

Brad, Pam, Sophie, and Liam

Sunday, February 16, 2003 7:54 PM CST

Just a quick update so please forgive spelling, grammar, etc...

They moved Liam last night from the temporary NICU in Women and Children's to progressive care in Huntsville Hospital west. This was good because it means there is a window where visitors can see him and that Sophie can visit with him for 15 minutes once per day.

Unfortunately, they also discovered that Liam has jaundice and he has it bad. Normal bilirubin level is about 11 and they usually treat at 13. Liam's level was 20 when they finally got around to testing yesterday afternoon. When Pam and I showed up at the hospital at about 8:00 last night to see him, the nurse told us that he wouldn't be able to breast feed at all due to the severity of the jaundice.

This was VERY frustrating to Pam and me as we had asked each of the nurses and the doctors on many occasions about jaundice. We told them that Sophie had it when she was born and Liam looked jaundiced to us even as early as Friday. One of the nurses went ahead and ordered a test since she was getting some blood for the PKU test anyway.

It was also frustrating to us that we felt there had been orders changing his treatment without consulting or informing us until after the fact. The doctors have been somewhat less communicative than we would have hoped and much less so than what we are used to from our time at Children's in Birmingham for Sophie's treatments. Maybe it is due to the growing pains at Huntsville as they've been going through the move to the new location, but we've been a bit disappointed in the care. However, it has made us more appreciative of the care, courtesy, competence, and professionalism shown to us by the folks treating Sophie in Birmingham. They have a great group of people down there and if any of you guys are reading this, THANK YOU. You have been wonderful.

Anyway, they had Liam under the lights and his bili level was 16.5 this morning. The doctor said his level had not dropped as much or as quickly as he had hoped, but that he was progressing well. Hopefully, he will have it licked by tomorrow morning and Pam will be able to start feeding Liam again. Luckily she is producing milk.

The doctor also had called the cardiologist and said that he planned to put Liam on a Holter monitor for 24 hours starting tomorrow and hopefully he can go home with us on Tuesday. We're praying and keeping our fingers crossed.

We are home right now. Pam, Sophie, and I are all very tired. Especially Pam. I convinced her to come home early tonight and get some rest instead of going back to the hospital tonight and giving Liam a bottle. We'll just call to check in instead. She really needs some rest and the rest of the family could stand some too. We're kind of the zombie family right now. Too much stress and not enough sleep.

I promise I'm making progress on the pictures. I have got them from the camera to the hard drive and resized to something small enough for reasonable download times, but I have been unable to get them uploaded to our home page. I'm going to try and put a couple of them here in place of Sophie's current pictures right now, so check the photo section if you want to see him.

Thanks for all of your thoughts, prayers, and well wishes.

God bless.

Love,

Brad, Pam, Sophie, and Liam

Friday, February 14, 2003 8:20 AM CST

IT'S A BOY! Okay, we already knew it, so that's not too surprising. We're calling him Liam.

William Jasper Knight was born yesterday at 15:11, weighed 8 lbs 14.4 oz and was 21.5 linches long. Pam did great and had no problems with the delivery. She is doing fine now. Sophie watched the whole delivery and loved every minute of it.

Liam had some trouble breathing so they sent him to NICU where they discovered a little heart problem. He has SVT which is an arrhythmia condition that causes his heart to periodically race up to almost 300 bpm. They gave him some medicine last night and it seems to be controlling it. He will have to continue to take the medicine for at least a year and we'll need to monitor his heart rate. Good thing that giving medicine is something to which we've grown quite accustomed. :) He will hopefully have outgrown the condition by then according to the cardiologist.

His breathing is fine now. Pam has been going down to ICU to feed him and we hope to have him in her room with us later today. I spent the night here at home with Sophie and we're heading back to the hospital.

I'll try and get some pictures online soon. Just wanted to briefly update everyone.

Sunday, February 9, 2003 7:34 AM CST

This week Sophie finished her third divided dose methotrexate treatment of the intensive continuation portion of her protocol. This portion of her treatment will run in 12 week cycles consisting of the divided dose methotrexate every two weeks for twelve weeks followed by a "mini-induction" of spinal methotrexate, intravenous vincristine, and a week of dexamethasone. This portion of the protocol will last for 48 weeks.

We went down to clinic on Wednesday afternoon for bloodwork and for Sophie to be examined. Everything checked out so we got her medicine and came home and started treatment. She gets methotrexate, which is what she got during the hospital stays, but rather than in her port or her spine she gets it in 4 oral doses over a 24 hour period. We crushed up 5 1/2 pills and gave them to Sophie in a spoonful of yogurt when we got home. She takes this really well. The only bad part is the doses must be given every 6 hours round the clock, so we had to wake her up once in the middle of the night. She cried but took the spoonful and went back to sleep after a quick obsessive teeth-brushing by Pam. :-) She got another dose Thursday morning and the last one after lunch. We had to give her the leucovorin 48 hours after the start of the methotrexate and again 12 hours later, so she finished up with the medicine yesterday morning.

Everything is going well so far. She has not had much nausea from this treatment, but we have been cautious and have given her Zofran regularly the whole time she's taking the methotrexate. We are very grateful for how well Sophie's treatment has gone so far. Amber, who we have mentioned before was diagnosed about the time as Sophie and is on the same schedule as Sophie, had to have her treatment delayed this week because her counts were low and her liver enzyme levels were high. Please pray for Amber, though I know she will enjoy a week without having to take any medicine.

Luckily for us, Dr. Schwartz has agreed to let us have a little more time between visits so we don't have to go back to Birmingham until March 4 if all goes well. Hooray! We will take Sophie to her pediatrician in two weeks and have her weighed and her blood checked and the results faxed to Birmingham so they can tell us whether to give her the next treatment.

This is a good time for us to make fewer trips to Birmingham as Sophie's baby brother is expected to arrive this week. If Pam hasn't gone into labor and had the baby already, we will induce at the end of this week. It's a good time to do it between Sophie's treatments and Sophie is really excited. She can't wait to "pat him and hold him and sing baby, baby to him." :-) Pam was 3 cm dilated and 75% effaced at her appointment this week and has had a few contractions already, so it's getting to be that time.

We will try to have an update as soon as possible after the baby arrives and hopefully have some pictures as well. Please continue to remember us in your prayers and God bless.

Love,

Brad, Pam, and Sophie.

Saturday, January 11, 2003 at 02:07 PM (CST)

Hello, everyone. First, I apologize for not having updated the page sooner. We've been very busy with Christmas and stuff. In fact I just had to stop writing this because Sophie needed a taco (that's a burrito to the rest of us) and she needed it "right now". :) Also, please be patient with us about sending out thank you cards. We haven't forgotten, we are just behind.

Sophie has now officially completed the in-patient portion of her treatment. So unless she gets a fever or has some other complications, we won't be having any more hospital stays.

Her last stay went pretty well though it was probably the most difficult one so far. I stayed with Pam and Sophie the whole time instead of going back to work after her procedure on Thursday. Pam had to leave us to attend the funeral of her Granny Hughes Thursday afternoon (in a pretty nasty rainstorm) and she is so far along in her pregnancy that we thought it would be best for me to stick around to help with Sophie. Good thing because Sophie had a few problems with her Diamox that they give her to keep her urine from getting too acidic while she's on the methotrexate. She's taken it well before, but threw up every time we gave it to her this time. I can understand it because I tasted it and the stuff is really, REALLY bad tasting.

Another problem on the trip was that we took a lot of pictures at the hospital but unfortunately we have lost the roll of film. Maybe it will turn up, assuming we didn't leave it at the hospital. We also got out of the hospital later this trip than any so far. We didn't get home until 3:00 and had to get ready and leave an hour later to go to Crossville for a Christmas dinner at my Aunt Joy's house.

Sophie did pretty well after the treatment, but she and Pam picked up a cold somewhere (I got it later) so both of them were feeling a bit peaked on Christmas day. In addition to the cold, Sophie managed to fall down twice and throw up once on Christmas day. She also dumped 3/4 of a bottle of paint on the floor when Pam turned her back for a moment. Pam and I had the brilliant idea that she would enjoy paint for Christmas. Needless to say, Sophie enjoyed the paint much better than we did. And although it was washable, paint is still not easy to get out of carpet. When I came downstairs to see what the hubbub was about, both of them were crying. Sophie was crying because Pam was keeping her from playing in the spilled paint and Pam was crying because she was thinking about how much more difficult this is going to be when we have two kids. :) We got a picture of the spilled paint, but of course it was on the roll of film that we lost. :(

On January 8th, we went down to B'ham for a bone marrow test so they could make sure Sophie was still in remission and we could start the next phase of treatment. We were pretty apprehensive about it as we had recently heard the bad news of the death of Janie Sims. We didn't know Janie but heard about her from the parents of Taylor Watts (website here), who was recently diagnosed with neuroblastoma and who we have mentioned before on the page. Janie was a beautiful 5-year-old girl with ALL who relapsed in September after 11 months of treatment. She passed away on January 4th not long after having received a stem cell transplant form her brother. Please pray for the Sims family as Janie has 2 brothers and 2 sisters and they have all been through so much. Pam and I both broke down Sunday night after reading Janie's story on her website (click here to go to Janie's page) and were very apprehensive about Sophie's bone marrow test on Wednesday. Janie had ALL like Sophie.

Anyway, the bone marrow test went well, and Sophie is still in remission. We started the next treatment Wednesday night. This phase will be oral doses of methotrexate, which is the drug she was getting via IV on her hospital visits. We had to give Sophie 5 1/2 pills at 6:00 pm Wednesday night and wake her up at midnight and 6:00 am for two more doeses and then give her the final dose at noon on Thursday. Then we had to go back to Birmingham Thursday afternoon for a methotrexate level. (The bright spot of the Thursday trip was that we got to see Taylor as he was back in the hospital for an infection. Hopefully he is back home now.) Sophie took the medicine fine (although the one at midnight was a bit rough) and her level was okay. We gave her leucovorin (the antidote to the methotrexate) last night at 6:00 and again this morning at 6:00. So far she hasn't been very nauseated and has been feeling pretty well. She'll get this treatment every two weeks in addition to a round of oral dexamethasone, IV vincristine, and spinal methotrexate every 12 weeks. There should be 4 of these 12 week cycles if all goes well.

We are all doing well right now and are just hustling to try and get everything we need to get done before the baby arrives. Depending on Sophie's treatment schedule, we may induce a week or so earlier than the due date of February 23rd but we're not sure exactly when. We are definitely not ready for him yet. :)

We hope that you all had a joyous holiday season and are doing well. Thank you for all of your kind words and thoughts and especially for your prayers. We'll try to keep the updates a little more regular and hopefully we'll add more pictures soon. Take care...

Love,

Brad, Pam, and Sophie

Tuesday, December 17, 2002 at 01:53 PM (CST)

Hello everyone!!!

We are leaving tomorrow for Sophie's last inpatient chemo treatment. Please pray that everything goes well. We will post an update on this trip as soon as we are able.

On a sad note, my (Pam's) Grandmother Hughes passed away this morning. She was a wonderful grandmother and we will all miss her very much. Please remember my extended family in your prayers today.

I also wanted to share a poem that was posted on a bulletin board I frequent. Considering our circumstances with Sophie and with expecting a new baby it really touched me. Maybe it will touch someone else also.

TO MY CHILD:

Just for this morning, I am going to smile when I see your
face and laugh when I feel like crying.

Just for this morning, I will let you choose what you want to wear,
and smile and say how perfect it is.

Just for this morning, I am going to step over the laundry,
and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and
Let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep
the computer off, and sit with you in the backyard and blow bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble,
When you scream and whine for the ice cream truck,
And I will buy you one if he comes by!

Just for this afternoon, I won't worry about what you are
going to be when you grow up, or second guess every decision I
have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies,
and I won't stand over you trying to fix them.

Just for this afternoon, I will take us to McDonald's and buy
us both a Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell
you a story about how you were born and how much I love you.

Just for this evening, I will let you splash in the tub and not get angry.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.

Just for this evening when I run my finger through your hair
as you pray, I will simply be grateful that God has given me
the greatest gift ever given.

I will think about the mothers and fathers who are searching
for their missing children, the mothers and fathers who are
visiting their children's graves instead of their bedrooms,
And mothers and fathers who are in hospital rooms
Watching their children suffer senselessly, and screaming
inside that they can't handle it anymore.

And when I kiss you good night I will hold you a little
tighter, a little longer. It is then, that I will thank God for
You, and ask him for nothing, except one more day...

Monday, December 02, 2002 at 03:52 PM (CST)

We arrived at Clinic 5 on Tuesday, Nov. 26, at 9:00 am. Sophie did very well during her clinic visit. She only cried a little when they drew blood from her arm and she was a very cooperative little patient when Dr. Berkow examined her (she knows the drill now:-)). We did have a little trouble when they tried to access her port though - Bethany tried to access it and missed so she called Richard (another NP) in to help. He was able to access it but, you could tell it really hurt Sophie. Apparently, her sutures have come loose that hold the port in position so her port may have to be manipulated sometimes before it can be accessed. She has such a finicky port anyway and this will just make it more of a trial.

We ate lunch while we were waiting for Sophie's room to be available. We did get a bigger room this time. It was nice to be able to get into the bathroom without having to turn sideways and squeeze in (The last 2 visits we had room 441 and it was so small that the bed kept the bathroom door from opening all the way). Sophie allowed the nurse (Lindsey), on duty when we arrived, to pick her up and hug her. We were amazed. She rarely allows people she knows to pick her up when she first sees them so this was quite amazing. This visit was also better since Brad was able to stay with us the whole time. It is just so nice when we all can be together.

Sophie's Lumbar Puncture (LP) was started a little before 9:00 am Wed. morn. Bethany was in the OR so Richard did her procedure. After the LP they were supposed to start Sophie's Zofran in her IV. Sophie had 2 bags of fluid (bicarb and saline) hanging on her pole. The Zofran has to be injected into the saline because it reacts with the bicarb. The nurse accidentally injected the Zofran in the wrong line. Fortunately, the right line was hooked up to Sophie so it just meant ordering a new dose of Zofran and a new line for her bicarb bag (she gets hooked back up to carbs after her Zofran). After she got her Zofran they started her methotrexate (chemo).

Dr. Castleberry was the doctor on rounds this week. This was the first time we met him and he seemed like a really nice doctor.

The dentist on rounds came by also. Due to the chemo, Sophie's teeth are starting to gray slightly. I don't know why but Sophie's teeth have been a real tough thing for me to handle. It is funny how the smaller things bother you so much when you have a much bigger problem to deal with. Rationally, I know that if she lost all her teeth that would be a small price to pay to make her healthy. (I blame pregnancy hormones for "most" of my insanity ;-)).

Dr. Shwartz stopped by for a visit. He is really a nice man and we are grateful to have him and Dr. Berkow as Sophie's doctors.

Later in the afternoon, Amber (I think we have mentioned her in previous journal entries) and her sister, Megan, brought Sophie some drawings of her name that they had done for her. Later we hung them on her hospital door. It was nice to talk to Amber and her mother about what they have been through since Amber was diagnosed with ALL. Also, Amber (9th grade) was able to tell us a lot about things from Sophie's viewpoint that we have wanted to know. For example, Sophie will often tell us that she dreams about the "fire in my mouth". We've never really understood this till talking to Amber. She says that when being sedated her mouth burns. Sophie has never been able to tell us this but it would explain the dream.

Wed. evening, Sophie was standing beside the bed in the floor when there was a knock at the door. When the door opened it was a couple of clowns who were going from room to room entertaining the kids. Sophie caught one glimpse of them and screamed in terror. She ran and jumped in my lap and buried her face in my shoulder. She was shaking like a leaf. I felt bad for the clowns. They apologized and quickly closed the door. We had no idea she was terrified of clowns.

Tricie, Michael, Madison, and Payton came by Wed evening. They brought us some BBQ for supper. It was delicious!!! Sophie really enjoyed seeing them and had a good time playing with the girls.

Thanksgiving Day morn we watched the Macy Parade. The hospital served Turkey and dressing for lunch. Sophie ate all her dressing which suprised me (I was also a little nervous since I know dressing has eggs in it and Sophie had an allergic reaction to eggs around a year ago. Hopefully, she has outgrown that).

Brad's Dad and Barbara came by Thurs. afternoon. It was nice to see them and Sophie really enjoyed their visit.

Sophie's port gave blood very well Wed and Thurs. Her levels were at .33 on Thurs. so we had to stay another night (as expected).

Thurs. night the hospital was serving the same thing that they served for lunch so Brad decided to go on a food hunt. Needless to say everything was closed so he got some chips with bean dip and cheese dip from Walmart for us to munch on. Brad also got some tortillas and Sophie ate two bean burritos. Actually, supper was pretty good after all the hospital food.

Thurs. evening Amber and her dad (both in a Christian band) serenaded us all out in the hall. It was really nice. Sophie and I sat in our doorway and listened to the music. Sophie even got up and danced some.

Friday morn they checked Sophie's levels early. Sophie's port was not wanting to cooperate but they finally got enough blood to check her levels. It came back at .03 and we were allowed to go home. Woohoo!!! On our way out we checked in on Amber and she was sleeping. Her Dad said that she was not feeling well and they were not expecting to go home Friday. We hope that she got to feeling better and was able to go home soon thereafter.

On our way home we stopped by Huntsville Hospital to check on my Granny Hughes. She was in CCU and not doing well. She has pneumonia and has been fighting it for a while now. Please remeber her in your prayers.

We got home a little after 1:00 pm. It is always nice to be home. Hopefully, we don't go back till Dec. 18th, which should be Sophie's last inpatient treatment. After that, she will start receiving her methotrexate orally and they will increase the dose of her 6MP that she takes daily now. She will go to clinic to check her blood levels, etc. Please pray that she stays healthy and is able to finish up with this stage of her treatment.

Again we want to thank you all for your love, support and prayers. We also appreciate your guestbook entries and all your words of encouragement. We are so grateful to you all.

May God Bless You!!
The Knight Family

P.S.
Don't forget to check out the link to new pictures at the top of the page.

Sunday, November 17, 2002 at 09:29 AM (CST)

Okay, sorry about the delay in updating Sophie's page. We've been really busy lately.

Sophie went in for her 4th hospital stay on the 6th. It has become pretty routine for us now. Check in, sign paperwork, get Sophie's vitals, do her bloodwork, check into the hospital, etc.

We met Kelly Hicks again and her husband Steven in the Clinic 5 waiting room. They are the parents of Sarah Anne, who was diagnosed with ALL about 2 1/2 years when she was about Sophie's age. They were there for Sarah Anne's final bone marrow aspiration and spinal tap. She has finished her treatment protocol and is cancer free. It is nice to know someone who has already successfully walked the road we are currently on. You can see Sarah Anne and her family and see how her progress went at her web page here .

We got room number 441 for the second time in a row. All the rooms in 4 Tower are nice, but room 441 is the smallest one on the floor. We probably should just consider ourselves lucky to get a room. Unfortunately 4 Tower is a busy place. A lot more kids have cancer than one would expect. Wednesday was pretty uneventful after we got checked in.

Thursday morning Sophie had her procedure. She did not have to have any Dimox this time as her urine acidity levels were good. She has had to have it every time before. Sophie had not been placed on the schedule for Simon sedation when we arrived on Wednesday, but they got her on there and we were the first procedure Thursday morning. It went well and went quickly. After the procedure, Sophie actually spoke while Bethany was walking us back up to our room. Bethany wrote it off as the influence of the anesthesia. Nobody at the hospital thinks Sophie can talk as she had yet to speak to anyone at the hospital prior to this visit. This would be a sign of things to come. :)

After we got back to the room and they gave Sophie her Zofran and got her hooked up to her methotrexate, I left to go back to Huntsville to work. I've been able to get a half day on Thursdays and a whole day on Fridays during her hospital stays. Which is good although it leaves Pam and Sophie alone and bored.

Pam and Sophie slept most of the afternoon away on Thursday and then Joyce, Lana, and Dana came for a visit that night. Sophie had fun with them. After they left, Sophie actually spoke to our nurse Nikki. She was our nurse one day on our last visit and Sophie liked her, but wouldn't talk to her. This time Nikki bribed her with six cents to go in her change purse that Joyce had brought her.

Friday morning was uneventful, but Friday afternoon was a chore. When they came to draw Sophie's methotrexate level, her port just would not give any blood. It's always been kind of finicky and this was one of those times. They spent about three hours off and on trying various things to get it to work. Unfortunately, she was off her fluids during this time as well. They finally just stuck her arm to get her level which was just slightly too high for us to go home. They were going to reaccess her port to get it going again, but then Richard was able to get a blood return from it.

Pam and Sophie got a visit Friday from Cliff Jacobs and his dad. Cliff is a student in one of Tricie's classes at Sardis. He also has cancer and had been told that his prognosis is looking better and that he may be off chemo within a year. He had been told earlier that he would have to be on chemo indefinitely. Pam and Sophie were glad to meet them. Please pray for CLiff and his family.

All this stuff happened before I got back down there Friday. I stopped and got some supper and got there about six. After we ate, I took charge of Sophie so Pam could get a shower. Sophie wanted to go for a walk, so we grabbed her IV pump and went for a stroll. Some of the decorations from Halloween were still on the wall and Sophie was particularly enthralled with one black cat. Nikki was at the nurses station as we walked by and Sophie talked to her again, telling her that she was "going to see the black cat" and how it "scared her" with it's "back all up". Well, Sophie must have dragged me up and down the hall twenty times. "Want to go see the black cat." "Want to go see Nikki." After a few minutes she was talking so much some of the other nurses came over to see Sophie talking. They all couldn't believe it since she had been so quiet and shy all this time.

One funny thing she said to Nikki was "mommy's taking a shower. She's nasty." Nikki got a good laugh out of that. After Pam got out of the shower, she came out of the room to see what the commotion was because she heard laughing and squealingout in the hall. And it sounded like Sophie. Sophie had a real ball. And wore me out. :)

Sophie kept on talking through the evening, also speaking to Holly who was out night nurse on Friday.

Sophie's levels were so close on Friday that they didn't even draw them on Saturday morning and we got to leave pretty early, about 9:30, after they gave her some Zofran and her second dose of leukovorin. So we got home around lunch time on Saturday. We just kind of drowsed the rest of the day. Being in the hospital is tiring, especially for Pam.

We had to go back down to the hospital this past Wednesday for another chemo treatment. Just a dose of vincristine. It went well. Sophie spoke to Cynthia, the nurse who gets Sophie's vitals. Sophie told her "I want a red one" when Cynthia gave her a lollipop after she was finished. :) She also spoke with Dr. Schwartz for the first time. He got a kick out of it as he's been unsuccessfully trying to get her to talk to him from the start. Her port did great and it just a took a couple of minutes to give her the vincristine.

Sophie wanted to go to the toy box after her treatment and got some stickers. She spoke to Bethany again while she was back there. Sophie had just been starting to open up a lot with people when she was diagnosed with cancer, so it's good to see she's starting to open up a little bit again.

Well, I guess that's about it for this update. Until next time...

God bless,

Brad, Pam, and Sophie

Wednesday, October 23, 2002 at 10:31 AM (CDT)

Well, we have made it through another inpatient treatment. Sophie started out at clinic at 8:30 on Wednesday morning for lab work (She had to be stuck about 5 times before they were able to access her port - poor thing). We also got to see Dr. Berkow. While we were waiting for a hospital room to become available we went and ate lunch at McAllister's Deli. Once Sophie was in her room she was started on her IV fluids. Dr. Schwartz and Dr. Hilliard were the doctors on rounds this week. Sophie really likes Dr. Schwartz, though she still has not talked to him. She tells us he is "nice".

Misty came by to visit Wed. evening. She also had a co-worker, whose son was at Children's, that she was visiting. It was really nice visiting with Misty. Bart is a lucky guy!!

Sophie's lumbar puncture was on Thurs. morn. Everything went well. Afterwards, she was started on her Methotrexate and then Brad left for work. Her chemo was finished around 1:30. Something that is a little amusing but also a little sad is that when Sophie is playing with her dolls she will tell us it is time for their chemo. I guess to her this is normal life now. I guess I have mixed feelings about it. It is so sweet yet at the same time I feel it is sad that a two year old even knows about chemo.

Called Brad Thurs. evening to tell him about the day. Poor guy went home after work and painted our bedroom. He felt it would be better to take care of it while we were away so the fumes had time to clear out. What a guy!!!!

Oh! One of the dental residents came by Thurs. and said Sophie's teeth looked good but that she might have a cavity. I wanted to cry. I have been a fanatic about her teeth since before she even had teeth (I drive Brad crazy).
Bethany said that the chemo can sometimes play a part in that. I don't know, but it is extremely frustrating to me. Sophie's doctors don't think we should worry about it. They don't really want her having dental treatments (even cleanings) while she is under chemo unless absolutely necessary. I even have to use special brushes, etc. when I brush her teeth. They don't want any bleeding, etc. where bacteria might be introduced.

Sophie did have to have Diamox every morning again this time. She fought a little more this time when taking her medicine. I think she is just tired of it all.

Friday morning, Dad came by to spend some time with us. We were really glad to see him. It sure helped the day pass faster. Thanks Dad!!!

Sophie's levels came back at .26 on Friday so, as expected, we had to stay Friday night also. Brad got to the hospital around 6:00. Yea!!!

We did have a frightening thing happen during the night Friday night. The nurse came in and changed Sophie's IV. I was only barely awake and was thinking they must be giving her Zofran. Then I realized they don't usually give her Zofran in the middle of the night. Just before the nurse injected the medicine I asked what she was giving Sophie and it was an antibiotic that I had never heard of. I told her that Sophie had never received that before and she asked me if I wanted her to go double check (please!!!). The medicine was for another child. That was really upsetting because what if neither Brad nor I had awakened? Sophie would have gotten a medicine that she didn't need. I don't know if it really would have hurt her but, it makes you realize how easy it is for mistakes to happen.

Saturday morning, they gave Sophie her leucovorin and took her levels. The level came back at .06. We had to wait around a long time before the doctors came by to release her though. While we were waiting, Brad went and found another patient in 4-tower whose father is on an internet Auburn forum that Brad frequents. They just found out that their son has a rare form of cancer. Their son's name is Taylor. Please add him and his parents to your prayer list. I also went and found Misty's co-worker, Pamela, and her son Jaylin (sp?). They have really been through a lot. I pray that the Lord helps them through this most recent tragedy (Jaylin had to have an arm removed). Please add them to your prayer list also. There is just way too much sadness in the world. It can be overwhelming at times.

After the doctors made their rounds we were released. We arrived home around 4:00 and just collapsed. The saying "Be it ever so humble, there's no place like home" is absolutely true. It is just great to be home.

Sophie has done very well since we have been home. Please pray that she continues to do so. Her next inpatient treatment is scheduled for Nov. 6.

Thank you all for keeping up with Sophie's progress. We appreciate your prayers and words of encouragement so much. God Bless!!

Pam

Wednesday, October 16, 2002 at 04:29 AM (CDT)

We all went to visit Pam's obstetrician Dr. McMichens yesterday. According to the ultrasound all is well with the baby and Sophie found out that in February she will have a new baby brother. She was excited. But not nearly as excited as her grandfathers. :)

This morning we're off to Birmingham for Sophie's third in-patient treatment and we'll have an update this weekend.

Wednesday, October 02, 2002 at 01:07 PM (CDT)

(Please forgive me if this entry is rather choppy and full of mistakes. Thanks - Pam)

Let me begin this update by thanking everyone for your love, prayers and support. Your guestbook entries are a major encouragement for us. Thank you so much!!!

We were at clinic 5 at 8:30 Wednesday morning (9/26). Sophie did so well!! She didn't complain at all when Cynthia took her blood pressure, temperature, weight and height. Brad took care of the paper work and then we went to the lab for bloodwork (taken out of Sophie's arm again. She did cry for this - so would I :-)). After a short wait, we saw Dr. Schwartz. Sophie was such a big girl while being examined - not a peep. She followed all his instructions when he looked in her eyes and mouth. (She thinks Dr. Shwartz is "nice".) We then had another short wait and then we were called back again. Bethany (Sophie's nurse practitioner), had forgotten to order one of Sophie's blood test so after they accessed her port they had to draw more blood. I think we've mentioned before how finicky Sophie's port is about giving blood. It can be quite an ordeal, as was the case this time. While we waited for the test results we went to admissions and Brad got Sophie registered. While there, we met a teenage girl named Amber. She was diagnosed with ALL about 2 days before Sophie. They are on the same treatment schedule. After Amber's first methotrexate admission, she developed mouth, throat, and stomach ulcers and was extremely sick. She had to be re-admitted to the hospital the Thurs. after she had left. It sounded awful and made me nervous about this and future treatments for Sophie. We pray everything goes well for Amber this time.

After admitting, we went to the cafeteria for lunch. When we got back to clinic, they let us know all her test had come back fine and we could go on to her room (room 438 in 4 Tower). We were probably in her oom by around 12:30 or 1:00. After Brad brought our luggage in and made sure we were okay, he went back to Huntsville to try and get some more hours in at work. I know that it has been really tough on him trying to keep up at work while taking time for Sophie's treatments (and for my OB appointments). He really amazes me at times.

Well, I kept Sophie entertained with books, videos, etc. for the rest of the day till Brad got back around 7:00. They also started Sophie's IV fluids during the afternoon.

Sophie was required to be NPO (no food or drink) after 12:00 am Thurs. in order to be prepared for her lumbar puncture later that morning. They also kept track of her urine acidity and specific gravity and it was a little off so at 5 am Sophie had to be given Diamox.

The nurse came for Sophie a little after 9 am for her lumbar puncture. Brad and I stayed with her in the procedure room till she was asleep and then we went out to the waiting room. Bethany came out soon to tell us everything went well and that they would come get us after Sophie awoke (We had the same anesthesiologist we had last time. She prefers parents wait till their child is awake before they come in - that is really frustrating for us since we know Sophie goes nuts when we are not there when she wakes. The other anesthesiologist that we have had let us come in immediately after the procedure and it is just so much easier and more pleasant.) The nurse came to get us about 15 min. later and asked us to hurry because Sophie was really upset (no kidding!!).

We went back to Sophie's room and then Brad left to go to work. They started her IV Methotrexate around 10:30 after her first dose of Zofran (she receives this regularly during treatment for nausea).

Sophie was quite a handful Thurs. afternoon. She was already tired of the hospital and wanted to go home. That afternoon she woke from her nap screaming. I couldn't calm her and came really close to calling the nurse. She was trying to climb off the bed and wouldn't let me touch her. After about 10 minutes or so she calmed down enough that I could hold her and we went for a walk through the halls. That seemed to help. I think she had a bad dream and then woke disoriented. After the walk she seemed to be fine. I did mention it to Dr. Watts (Dr. on rounds) when he came by.

Sophie is on the 4 hour Methotrexate (see link in Sept 9 journal entry) so she was through with her chemo around 2:30 and put back on fluids. The remainder of the afternoon went much better.

Thurs. evening Mom and Lana came up to the hospital for a visit. We really were glad to see them (especially since they brought Chick-fil-a. :-) Thanks!!!).

Brad spent Thurs. night at home and we missed him but the night went fine. Sophie slept well and seemed to accept that we were going to be at the hospital for a while.

Friday Morning, our friend, Melissa McMahan, came up to spend time with us. We enjoyed her visit and really appreciated her taking time out of her busy schedule to keep us company. Thank you Melissa!! **The cookies were delicious!!!**

Also, on Fri. a hospital volunteer came by and read to Sophie and the hospital chaplain came by and brought Sophie a plush lion named Simon that a local church had provided. Simon is a link for prayer between the church and the child. It was really sweet.

They checked Sophie's levels Fri. afternoon (blood test to check methotrexate levels). Sophie's came back at .28. (She can go home once her level is at .2) Richard (nurse practitioner on rounds) said Dr. Watts felt we could go home if we wished but we would have to give Sophie her Leucovorin (antidote to Methotrexate) at 3am and 9am and we would only be given enough for those doses; so if Sophie spit it up, etc. we would have to come back to B'ham. I called Brad to make sure he agreed, but I felt better staying one more night and letting them administer her leucovorin and check her levels again. Dr. Schwartz came by later and said he felt we had made the best decision.

Dr. Schwartz and some of the nurses kind of made a game out of catching Sophie talking. She refuses to talk to any of the doctors, nurses or staff. She says she is "too nervous". Whenever they walk by the door to her room and hear her they come in and try to catch her talking but, once they open that door she clamps her mouth shut and refuses to speak -- what a little stinker!!

Patty, Patrice and Payton came up for a visit Friday evening. They kept us company till Brad arrived. Thanks guys!! It was nice to see you.

Sat. morn, Sophie received her leucovorin at 3 am. At 5am she had to have more Diamox. They drew blood aroud 7:00. And, she received her 2nd dose of leucovorin at 9am. Her level came back at .11 so we were allowed to go home after they gave her another dose of Zofran.

We arrived home around 12:30 -- woohoo!! It is so nice to come home.

Sophie has done well since she has been home. She has had some nausea. We have given her Zofran and it seems to help. She is still taking her 6MP every night and her Bactrim on the weekends.

Sophie is scheduled for her next inpatient treatment beginning Oct. 16th so we have a little break as long as she stays well. Please continue to remember her in your prayers.

God Bless you all (especially those of you who took the time to read this long entry ;-)).

Pam

Sunday, September 22, 2002 at 08:57 AM (CDT)

Not too much to report on Sophie's trip to the clinic last Wednesday, but it was her best visit yet. Pam and Sophie picked me up at work at about 11:45 and we made it to the clinic by 1:30.

I signed us in and they got Sophie's temp and weight and height. She didn't cry a bit. Then I went to get a couple of Sophie's prescriptions refilled at the hospital pharmacy. When I got back, Sophie had been called back to a room and Dr. Schwartz was examining her. He seemed very pleased with her progress and Sophie didn't cry at all during the exam. But she still hasn't talked to any of the doctors or nurses at the clinic yet. I think none of them really believe she can talk. :)

After Dr. Schwartz's exam, Kristen accessed Sophie's port to draw some blood and give her a dose of vincristine and Sophie did cry about this. But it went well and quickly. They had no problem getting the blood to come out this time and the vincristine went in fine as always so far. After this, we were free to go. We were in and out in less than an hour and we made it back by 4:00 in time for me to get another hour of work in before coming home.

Kristen called us on our way home to tell us the results of Sophie's blood test and all her counts were good.

Sophie has felt good this week, with just a little puffiness in her face and redness in her eyes being the only indication that she is sick or undergoing treatment. Hopefully things will go as well at the hospital treatment coming up this Wednesday as this last trip to the clinic. I plan to try and come back and work on Thursday and Friday so we're keeping our fingers crossed. After this trip, we should have three weeks of no treatment at all before the next hospital stay...we hope.

Until next time...

Sunday, September 15, 2002 at 12:59 PM (CDT)

We took Sophie back to Birmingham on Wednesday for another chemo treatment. This was just for an intravenous dose of vincristine, one of the four drugs they used to induce her remission. She also started back on the corticosteroid dexamethasone Wednesday night. We had been dreading this as the dexamethasone made her extremely irritable and sleepless as well as causing major food obsessions when she was on it for the four week induction. But this time she only has to take it for a week. She will also go back this Wednesday for more vincristine, so this week is sort of like a mini-induction. There will be another week like this in a couple of months.

The visit went pretty well. The clinic wasn't very crowded so we didn't have to wait long. I worked a half day Wednesday morning and we actually made it back in time for me to get in another hour or so when we got back.

It seems like every time we go to the hospital, we meet someone who has had it harder than what we've gone through with Sophie. This trip we met a lady whose son had a brain tumor when he was 12 or 13 years old. While he was going through treatment for that, her daughter who was a year younger got Crohn's disease. They are both doing fine now, so it is good to know that people get through these things.

The only real problem we had was that Sophie's port was finicky about giving blood again. It took several minutes to get the sample they needed. Also Bethany had a cold, so she put on a mask as a precaution before she accessed Sophie's port. I think this scared Sophie and may have contributed to her port problem. Her port seems to work best when she is calm, like asleep or sedated. Anyway, Bethany got Richard, one of the other nurse practioners to help out and he finally got a blood sample. Giving her the vincristine was no problem at all.

They called us with the results of her blood test while we were on our way home. All her blood counts were good. We were glad of that, because the treatment this week will probably knock all her counts down again.

Wednesday night, Sophie had a lot of trouble sleeping. She had a hard time going to sleep and woke up a couple of hours later screaming and scared. It was hard to get her calmed down. Thursday night was worse. She woke up screaming in the middle of the night and acted terrified of Pam and I. She struggled and stiffened her body and cried and it took over a half hour to get her to any semblance of calm. She and Pam ended up sleeping the rest of the night in the recliner downstairs. Sleeplessness and nightmares can be a side-effect of the dexamethasone, but we're not sure if that was the cause or not. She has done okay the last two nights and she is playing and talking and feeling pretty well considering. Hopefully this will continue.

We wanted to say thanks again for all the prayers and well wishes. Please continue to remember us when you pray.

Monday, September 09, 2002 at 09:11 PM (CDT)

Sorry to be so long about posting this, but anyway...

Well, we all survived Sophie's first inpatient treatment. The inpatient treatment starts out as a normal visit to Clinic 5 at Children's Hospital so we drove to Birmingham Wednesday morning for her 10:30 appointment. The clinic was hopping on Wednesday and there was a good bit of waiting. They treat so many kids with cancer and blood disorders that they are building a new clinic twice the size of this one. It was a few minutes before they called Sophie back. Sophie had told us before we left that she wasn't going to cry when they took her temperature and blood pressure and weighed and measured her. They do this first thing at every visit. I think they weigh and measure her to determine her body surface area which is what determines the dosages to use for her chemo. Well she made it through the temp and blood pressure with no problem, but cried when Pam put her on the scale and while she was being measured. Not too bad though, and she quit immediately after they let her up. She says she won't cry next time. :)

After this, we had to go across the hall to the lab for some blood work. Normally, they will access Sophie's port in the clinic and draw whatever blood they need or administer chemo through it. This is usually not very painful because we put a numbing cream called EMLA on the skin over her port before we leave home. It keeps it from hurting when they stick her. Of course Sophie still doesn't like it when they do it, but this way she only gets stuck once. Unfortunately this time they needed blood from her arm which is why we went to the lab. The nurse drew the blood very quickly and I don't think it hurt for very long but it was fairly upsetting to her. Sophie got Bugs Bunny and Taz band-aids on her arm and didn't cry after it was over.

After we got back from the lab it was after 12:00, so I went over to the cafeteria and brought back some lunch for us to eat while waiting for the blood test results and for the nurses to call us back. Her blood tests were all fine. After they called us back, we met Dr. Ship who we had not met before. Surprisingly, Sophie smiled at Dr. Ship. He let us know what to expect while we were in the hospital. We also found out exactly what protocol Sophie will be on. She will be on the POG-9905 protocol for patients with standard risk ALL. (Click here if you want to know more specific info about her protocol.) There are four different tracks in this particular study. Sophie will be in the one with the four hour methotrexate infusion and without the delayed intensification. It is hard to know how to feel about which part of the study she was placed into. They do the study to determine whether one of the variations in treatment is significantly better than the other or whether if they are similar one has fewer side effects than the other. Anyway, we also briefly saw Dr. Berkow and asked him a few questions. He told us that Dr. Ship and Dr. Howard would be making the rounds in the hospital while we were there. We also saw Dr. Schwartz in the waiting room before we went back. He stopped by to say hello and that he'd stop by and see us in the hospital as well.

After we finished talking with the doctors, Bethany (Sophie's nurse practitioner) came in to talk with us. I ran out to take care of some of the admission paperwork. Bethany then accessed Sophie's port and walked us up to our room. They didn't have any room in 4 Tower, which is where they put all the oncology patients, so we were put in a different room on the 4th floor. It was about 3:30 when we got settled into the room. This was during the shift change. The room was not as nice as the ones in 4 Tower and the shower was down the hall, but it was okay. They hooked up Sophie with an IV to get her hydrated in preparation for the methotrexate infusion on Thursday morning. Sophie couldn't eat anything after 3:00 am either because they were going to do the lumbar puncture and administer some methotrexate into her spine on Thursday morning as well. We all got settled into the room and I went to Wal-Mart to pick up a couple of items we had forgot to bring. Then we went to bed. One funny thing happened while Sophie was sitting on the bed coloring with Pam. Sophie was talking to herself and as Pam listened trying to figure out what Sophie was saying, she realized that Sophie was saying the names of her medicine over and over to herself. She said "6-MP, lactulose, dexamethasone..." Pam couldn't believe it. It was kind of amazing and also a little bit sad at the same time.

They gave Sophie some medicine called Diamox at about 5:00 am on Thursday to make her urine less acidic. Bethany had told us they would probably do this. Sophie slept very well during the night. Brother Wayne and Carolyn White and Billy and Priscilla Painter from Bethlehem Baptist Church stopped by for a visit and a prayer in the morning. Then we moved over to a room in 4 Tower as one had opened up during the night. When we got moved over there and finished breakfast, Brother Mike from Sardis Baptist stopped by for a visit. Unfortunately our visit with him was cut a bit short when they came to get Sophie for her spinal procedure. Sophie was hungry from not being able to eat during the night, but she handled it very well. She talked all about what she was going to eat when her "cedure" (procedure) was over. They took us up for Simon sedation and Sophie fell asleep with Pam holding her. Pam and I went to the waiting room. After the procedure was over, Bethany came out and told us everything went fine but that this anesthesiologist (we have normally had a different doctor) preferred for parents to wait until the child actually started to wake up before coming in. This was kind of frustrating since the other doctor we had the other times let us in as soon as the procedure was over so Sophie never even knew we were gone. This time when they came to get us, Sophie was yelling and trying to get off the table when we came in the room. She was not happy. But she was okay after Pam picked her up. We took her back to the room and they restarted her methotrexate IV. They also gave her Zofran to prevent nausea. Her infusion finished up a little after 2:00. This is when the "fun" started.

After Sophie's infusion was over, Sophie's nurse Pat came in to draw some blood to get Sophie's peak methotrexate level. Her level has to drop below 0.2 before she can go home. From the start, Sophie's port has been a bit finicky about giving blood. It has always flushed fine, but we have had to reposition Sophie and fiddle around quite a bit to get blood sometimes. This time was the worst. We moved her every which way to no avail. Finally it clogged up and wouldn't even flush. Pat tried to flush it out with heparin which is some kind of anti-clotting agent but when she tried to flush it the syringe popped off Sophie's IV and sprayed Pam and Sophie in the face and eyes. No harm done, but it scared Pam and Sophie both. Pat tried again and it again popped off, this time spraying heparin and some blood on Pam's shirt. After this we gave up and Pat said she would have to reaccess Sophie's port. As I mentioned before, normally Sophie's skin would be numbed by the cream but not this time, so it hurt a bit when they stuck her. She wasn't happy. We felt bad for Pat because she obviously felt really bad about having to reaccess Sophie. All of the nurses in 4 Tower are very nice.

Thursday evening I went to Wal-Mart to pick up a sticker book for Sophie. When I returned Pam's mom, dad, and sister Lana came by for a visit. They brought a very sweet email sent by Gabi, one of the friends they had made on their mission trip to Romania. He and his family are praying for Sophie and our family. We are praying for their family too.

All during the hospital stay, we had to monitor Sophie's urine output. We would put cotton balls in Sophie's diapers and give the diapers to Sophie's nurses. They would use the cotton balls to test the pH of her urine and weigh the diapers to determine the amount of fluid. After we went to bed that night apparently Sophie wasn't outputting enough fluid. The nurse came in about 4:30 and asked us about Sophie's diapers being dry. She had not wet her diapers for a few hours. So they increased the amount of IV fluid she was receiving and gave her some more diamox to increase the pH because her urine had made a big drop towards acidity during the night.

Friday turned out to be fairly uneventful. Sophie started wetting her diapers again and her pH got back to a good range. Dr. Schwartz dropped by after lunch and told us that Sophie's level was 0.3 so we would have to wait until Saturday to go home. This wasn't too unexpected to us since she didn't get started on the methotrexate until Thursday morning. Also, one of the chaplains came by for a visit and some prayer. He was originally from Kenya and had some interesting things to say. He seemed like a very nice man. He also brought a cap for Sophie. Friday evening Mom, Tricie, Michael, Madison, and Payton came by for a visit. Sophie was getting pretty tired of the hospital by this time and wasn't in much of a mood to talk or play. There were two nurses in the room when everybody came in, so she was kind of overwhelmed by it all and didn't open up much. I went to eat with them and they dropped me back off at the hospital just before it started to rain a little.

After I returned, Dad and Barbara stopped by for a visit. We talked a while and Sophie started to get a little less nervous, but never did really open up. She really wasn't having a great day. I guess it could have been the medicine. The doctor told us she might be a little "green around the gills" after the treatment. But she did pretty well overall. No mouth sores (yet) and no throwing up.

Also on Friday, we had another scare for Pam. When the nurse brought Sophie's 6-MP, she mentioned to Pam that she shouldn't touch the pill because she was pregnant. This upset Pam because she has touched these pills at least three times before. Supposedly 6-MP can cause birth defects. We knew that pregnant mothers couldn't take the pill but no one had told her not to touch it. I asked the hospital pharmacist about it and he said for Pam not to touch it though he couldn't say how much of a risk it was. This upset Pam even more. We asked Dr. Howard about it the next morning when he made his rounds and he didn't seem to have any concerns about it. He said that it's standard to take precautions with chemo drugs, but didn't think there was any risk from just limited touching as it couldn't get through the skin. Luckily I have been giving Sophie the pill almost every night (and every night from now on) so Pam hasn't touched it often anyway. I'm sure there will be no problems, but it gives Pam one more thing to worry about. She already has been worried about having a baby with a birth defect because of her age. I figure worry and stress are more likely to cause a problem than 6-MP or her age, but that's just me. Anyway, we're praying and trusting that everything will be all right. And I'm sure it will be.

Saturday, they gave Sophie leucovorin at about 3 am (I think. I know it seemed the middle of the night.) It's the antidote to the methotrexate and is related to folic acid. They gave her another dose later in the morning and drew Sophie's level. We got the results back just after lunch. It was below 0.2, so we could go home. Woohoo! After I did some running around to take care of the bureaucracy associated with checking out and made a few trips to lug our stuff to the van, we got out about 1:45. We made great time coming home. Sophie was very happy to be here. She and Pam crashed and I went out to watch Auburn play football on pay per view.

Sophie slept well Saturday night and seems to be doing fine but she spit up yesterday morning while Pam was cleaning her teeth. We took her to Big Spring Park yesterday afternoon to see the ducks and get some air. We blew some bubbles too. She likes blowing bubbles and watching the ducks and said "I had fun at the park, daddy." We also thought it was a good idea for her to see the ducks yesterday because sometime or other she has seen that tv ad with the duck that says "AFLAC" and it scares her for some reason. Seeing the other ducks helped with this I think. We also stopped at the grocery store. But Pam was too paranoid to let her in the cart. So she walked and was carried. Sophie threw up big before going to bed last night. She had talked about spitting up a couple of times yesterday, but we really didn't realize that it was the medicine until the throw up last night. She had just gagged while Pam was taking care of her teeth in the morning. Anyway, we gave her some Zofran. It seems to work well as she hasn't thrown up today.

We have to watch her for mouth sores that can develop from the methotrexate. We have some magic mouthwash that can help if she gets them. They can be painful. We also have to be careful brushing her teeth. They gave us an ultra-soft toothbrush and some spoinges to brush with. Pam is worried that Sophie is going to get cavities because they don't seem to clean as well as a real toothbrush. I'm not. :) We also have to be careful about exposing her later this week as her counts will drop (which means no more visits to the grocery store). But we have to go back to clinic on Wednesday for another dose of chemo so they will tell us her counts then. It should be a quick visit though (knock on wood). Unfortunately she will have to take a week of the dexamethasone starting Wednesday as well. This is the drug that made her feel bad. But it's only a week, so maybe it won't be as bad this time.

We have been very touched by all the guestbook entries we received while we were gone and by those we received before then. We'd like to thank everyone for your prayers, love, and support. It really is a help to us. Thank you all so much. Please continue to pray for us and may God bless all of you.

I probably left some stuff out, but that's what future updates are for. :) Again, sorry it took so long to get this posted. Now I'm off to give Sophie her 6-MP and hit the sack. Goodbye until next time...

Monday, September 02, 2002 at 12:05 PM (CDT)

I just wanted to write and thank everyone for their encouragement and prayers. We are so grateful to all of you. Please continue to keep Sophie in your prayers. She has a long way to go.

We will be going to Children's Hospital on Wednesday (Sept. 4th) for Sophie's first IV Methotrexate. She will also receive intrathecal methotrexate (in her spine) while she is there. The doctors should also let us know her protocol for the next 6 to 8 mos. We will post an update of her condition and her future protocol when we return home. (she will be in the hospital at least 3 days). Again, please pray that everything goes well and that Sophie doesn't have any problems with the new medicine.

Thanks again for keeping up with Sophie's progress and for your show of love and support. God bless you all!!!

Pam

Friday, August 23, 2002

This is another entry from Pam's journal. [Entered and edited by Brad.]

Well, I have some good news - Sophie is in remission! We went to clinic on Wednesday and they put Sophie to sleep for another bone marrow aspiration. As expected and hoped, they found that she was in remission. Now the job is to keep it from coming back. She will be admitted into Children's Hospital on September 4th for a few days so they can administer more methatrexate into her spine. They will also administer methatrexate intravenously over a 4 hour or 24 hour period depending on her exact protocol, which we will find out then. Sophie also started on a new daily medicine called 6-mercaptopurine (6-MP). And she no longer has to take the dexamethasone (yea!) We asked Dr. Berkow Wednesday about the trouble she's had walking. [She fell down on Sunday and had pretty much been unable to walk since without falling.] It is really upsetting. She falls down a lot and has actually started refusing to walk. The Dr. said it was probably due to the neurological effects of the vincristine and/or the muscle-wasting effects of the dexamethasone. It will just be temporary. [And she has been doing a little better over the last couple of days.]

Also, yesterday I went to my OB appointment. It took a while before they could find the baby's heartbeat (148 bpm.) Admittedly, I got a little nervous when it took so long for them to find it. I asked Dr. McMichens about cord blood banking. [Just in case Sophie doesn't continue to stay in remission and respond to the chemo, it's possible that she could benefit from a stem cell transplant. The blood form the new baby's umbilical cord could be a good match for this.] Dr. McMichens said everything was fine with both me and the baby. He seemed very willing to work with us around Sophie's treatments as much as possible. Sophie stayed with Brad while I went to the doctor. They went to Publix and got Sophie some olives. She loves to talk about "the baby in mommy's tummy." [In fact, she told daddy "my tummy's growling. There's a baby in there. It's hungry. It's a big baby." What a cutie.] She's going to be a great big sister.

Also, Sophie has been feeling much better the last couple of days. We took her over to Big Springs Park yesterday for a few minutes, thinking there wasn't much chance she could catch an infection out in the open like that. We blew bubbles. Sophie said that she had fun. She smiled a lot yesterday and laughed a good bit. There haven't been many smiles or laughs over the last month. We all watched some college football together. [Sophie insisted.] Hopefully things will continue to look up from here though we have a long way to go before she is cured. Please continue to pray for us.

Tuesday, August 20, 2002

This second journal entry is from Pam's journal describing her thoughts on the past few weeks. Most of this was written in short sessions of just a couple of minutes each while she took care of Sophie, so it may jump around a bit. And it was entered here by me (Brad) so it could be butchered by my typing and editing. Hopefully it will make some sense.

Wednesday, July 24th, I took Sophie to see her pediatrician because I had noticed some tiny, pinprick sized spots on her legs. I thoroughly expected to be told (maybe amidst a few snickers) that it was just freckles but my mind would be eased and I could go on without worrying about it.

Unfortunately I was told Sophie had a condition called ITP, where the body attacks its own platelets. The prognosis for ITP was good though and I was told she would most likely recover withought any intervention - we just needed to watch her closely [to make sure she didn't cut herself or bump her head or anything.] Dr. Cochran also told me she was going to send Sophie's bloodwork to a doctor in Birmingham just ot verify that no intervention was necessary. Well, later that afternoon I received a phone call from Children's Hospital in Birmingham. They wanted to see us first thing the next morning for more blood testing.

Brad took the day off on Thursday and we headed to Birmingham. My mom and dad were there at Children's Hospital when we arrived. [At that time we were regretting that they had troubled themselves needlessly because we felt pretty sure that she had ITP and this testing was merely a precaution.] We went to Clinic 5 and signed in. I'm afraid I was immediately taken aback when I saw all the little bald kids running around the waiting room. Sophie had lots of blood drawn [from her vein , a very unpleasant first time for her] and then had a bone marrow aspiration. That was so hard for me. She had been drugged but she still cried [a lot as it obviously was very painful] and so did I. It was a long day of blood tests and waiting. We knew the news was not good when six doctors and nurse practitioners came filing into the room. They told us Sophie had leukemia. I began to cry. I was trying so hard to listen to what they were telling us, but my head was pounding with the thoughts "My baby has cancer", "How did this happen?", "Why Sophie?", and "What did we do wrong?"

Our lives immediately changed after this talk with the doctors. First we had to go through the experience of telling all of our parents. That was hard. Then Sophie was admitted to the hospital that evening so she could immediately begin her treatment. Later that night, Brad and I both had a good cry. Everything seemed so much harder due to the fact that we are expecting a baby (due February 23rd). We had (have) a lot of fears about how we are going to handle all this with a newborn (not to mention fears about the pregnancy itself). It was all so overwhelming. We decided we could only do this by taking one day at a time and trusting God with the outcome.

Sophie was started on IV fluids as soon as she was admitted to the hospital. Friday afternoon she was taken away to surgery to have a port installed in her vein just under the skin of her chest. [The port consists of a line that enters one of the large veins near her neck and runs down under her skin to the port itself which is just under the skin just below her left breast. She had two ugly looking wounds where they installed it when she came back from surgery. One near her neck and a bigger one under her breast.] The port makes it easier [and safer] to administer all the chemo and blood and to draw blood when they need it [without having to stick her so often.] Going to surgery was a horrible experience. We were told she would be sedated before they took her from us [so she wouldn't know she was alone] but instead they just took her back to surgery. She screamed and screamed. [And she had nightmares about the experience for a week or so afterwards. She'd wake up crying and yelling about it.] I was crying my eyes out and Brad was really upset. Fortunately there was a wonderful couple, the Childs, also waiting for their son to come out of surgery. They kept us distracted and helped us pass the time while Sophie was away.

Bethany, Sophie's oncology nurse practitioner, also did a lumbar puncture while Sophie was under anesthesia and they administered here first dose of spinal chemo (methatrexate). When they finally brought Sophie back to us she was all groggy [and extremely swollen and puffy] and wrapped in a blanket. She looked up at me and said "I did it, Mama." What an angel baby!

Later we found out that Sophie falls into many favorable risk categories for leukemia:

- She has ALL (acute lymphacytic leukemia) instead of AML.

- She had no cancer in her central nervous system.

- She is a favorable age.

- She is female.

- Her leukemia's cell type is pre-B.

- Statistically, there is up to about an 80% cure rate for her risk categories.

Sophie was in the hospital through Monday. They started all of her chemo while she was there. She received chemo treatment in several ways. She got l-aspariginase shots in her leg (twice a week), vincristine intravenously into her port (once per week), methatrexate in her spinal fluid twice, and a cortico-steroid called dexamethasone (twice daily) by mouth [she hated taking it because it was very strong and bitter]. She also received allopurinol to help protect her kidneys while the chemo killed the blood cells in her bone marrow and bactrim, an antibiotic, to protect her from certain kinds of infections while undergoing the chemo. She gets the bactrim 3 days a week. The first month of her treatment is called induction. She has handled everything really well despite feeling very bad. The medicines make her very sick. She had trouble keeping the dexamethasone down at first but they gave her a concentrated liquid form so she doesn't have to take so much and she didn't throw it up. She has been transfused with platelets twice and red blood twice this first month. The red blood takes four hours to infuse. (We also found out that although she looks like her daddy, she has her mommy's blood type, B-positive.) She has lost some hair, but that has slowed down. [And she didn't have too much in the first place anyway.] She is really weak and prefers to be sitting in her mommy's lap all the time. She's been neutropenic (low neutrophil count) which means that she is susceptible to illnesses as she has few disease-fighting white blood cells to fight infection. Her food tastes really changed (probably due to the dexamethasone) and she has become fairly obsessed with food. Some of her favorites now are hot and spicy chex mix chips, pizza, bananas and cottage cheese, dill pickle and cheese, olives, black beans and sour cream, lasagne, etc. [and all are good candidates for breakfast as well in Sophie's opinion] And she didn't sleep well [hardly at all] for the whole four weeks of induction.

Sophie is such a big girl and handles all this so much better than I would have thought. It is so hard to have to watch her suffer through it all. All I know is that on Wednesday, July 24, I took in a seemingly healthy, happy child and a day or so later she was weak and sick. It has just been so hard!

We are going tomorrow for another bone marrow aspiration. This is the end of the fourth week of induction and Sophie should be in remission. [About 95% of all leukemia patients are at the end of 4 weeks.] If not, that is a bad sign. If she is, we will move to the next phase of treatment called intensification or consolidation. We should find out more about that tomorrow.

Everyone has been so kind to us since this ordeal started. We owe so many thanks to so many people. We have received so many calls, gifts, cards, food, and prayers - and we are so grateful. Everyone has been so helpful to us getting through this. Thank you so much.

Thursday, July 25, 2002

This first entry is from an update I had sent to some friends on the Saturday after Sophie was diagnosed. It should provide some good background on how this all came about.

Tuesday night Pam noticed a few tiny discolored bumps on Sophie's leg. They looked like tiny purplish freckles. Very light. We didn't know what they were and Sophie was otherwise feeling fine so we debated whether to take her to the doctor since she had just been for her two-year checkup in early July. Pam decided to err on the side of caution and take her in. If she was just developing freckles or something at least we'd know so we wouldn't worry.

The doc examined her and decided to do a blood test. When she examined the blood, she found that Sophie had a low platelet count. Like 48000 instead of 150000-450000 that was expected. The low platelet count was causing the little dots and the doc seemed to think it was an autoimmune condition called ITP, sometimes triggered by a virus or other infection, in which the body recognizes it's own platelets as an invader and attacks them. Since Sophie had a slightly low white count at her previous checkup, Dr. Cochran thought she had probably had some sort of infection (though Sophie had never shown any visible signs) so this made sense. ITP is a transient problem that normally resolves itself in a few weeks with no treatment or only the administration of prednisone or some other drug to increase the platelet count. Dr. Cochran sent the blood test results to a hematologist in Birminham just as a precaution. She did not supect any more serious illness since Sophie's blood counts were so very close to normal.

Turns out the hematologist wanted to see Sophie. He planned to do another blood test and if her platelet count was as low or lower, he wanted to get a bone marrow aspiration to make sure it wasn't something more serious causing the platelet problem. So we all drove down to Children's Hospital Thursday morning for the test. The doctor who examined this blood test told us that he was pretty sure it wasn't ITP as suspected because this blood test showed that her red count was slightly depleted as well. He told us that she likely had some virus that was causing multiple cell counts to be low...or that it could be leukemia or some similar illness. So they wanted to do the bone marrow aspiration to verify and they did it. The bone marrow aspiration was very unpleasant for both us and Sophie as she was awake and in pain during it. Though the medication they gave her helped and supposedly prevents her from having any memory of it.

So we knew that it wasn't a good thing when five doctors came into the room to talk with us about the results of the bone marrow test. The short of it was that Sophie has leukemia. They suspected at that time, and have since verified through more bone marrow tests, that it was Acute Lymphocytic Leukemia (ALL). ALL is the most common and most treatable version of leukemia which itself is the most common form of childhood cancer. They have since told us her ALL is cell type pre-B which is another positive as far as her risk category. Dr. Berkow tells us that she is in all of the best risk factor categories. Of course those are statistical and don't guarantee us anything for Sophie, but we are very hopeful.

So they admitted Sophie into Children's Hospital Thursday night and we talked to a bunch of different doctors and didn't sleep much. They sent her for surgery Friday to install a port under her skin to make it easier to draw blood and administer chemo. While she was under anesthesia, they did another bone marrow and a lumbar puncture. The LP showed her spinal fluid was negative for leukemia. So that is another good sign as far as her risk category goes. They then went ahead and started chemotherapy. [The initial chemotherapy consists of four weeks administration of several different drugs intravenously, orally, intramuscular, and into her spinal fluid. This four weeks of pretty intensive treatment is what they call induction. The goal of induction is to induce a remission which they can attempt to maintain through further long term chemo treatment. This further treatment to maintain or intensify the remission and make it permanent lasts about 2 1/2 years.]

She was a real trooper through all of the poking, prodding and scary stuff. When they brought her back from surgery Friday night all groggy, the first thing she said, her voice hoarse from the intubation, was "I did it, Momma." She had some fever Friday night. They had given her platelets in recovery.

Of all of the expectations Pam and I had for parenting or just life in general, sitting in a room and listening to a doctor tell us our precious 2-year-old daughter has cancer was not one of them. If you pray, please pray for us.

[In retrospect we were made aware of other signs that we might have been able to pick up on had we known. Sophie had not been sleeping well for a few weeks. She sweated a lot at night too. We didn't think much of it as she has always been very hot natured. Also, she had been having a lot of bruises in the few days prior to taking her to see Dr. Cochran. We didn't think much of these either as she is a two year old and had been very active lately. Bruises didn't seem very unusual. It can be very difficult to notice the symptoms of leukemia in any patient. But it can be especially difficult in young children like Sophie. We've since heard troubling stories of patients who had a hard time being diagnosed. Though it is difficult to think of it this way, we feel somewhat blessed that Sophie's ALL was diagnosed so quickly. Hopefully this quick diagnosis will help assure that she is cured.]

Brad

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