Journal History
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Thursday, June 21, 2007 3:18 AM CDT
Happy 7th Birthday, Isabella!!
We are very proud of you!! You are such an amazing girl and we love you so much!!
Love,
Mom, Dad, and William
Sunday, May 27, 2007 11:16 PM CDT
Bella continues to do well. She is very excited about starting 1st grade in the fall. She has had a terrific year which consisted of sleep-overs, play dates, parties, vacations, and ballet performances. We are now gearing up for her 7th birthday!! She is going to have a dress-up party with 14 little girls....how fun is that! Medically, she is doing well. We continue to have GVHD issues of the scalp and skin. If this continues our next therapy will be photopheresis. This is a process where they remove white cells from her blood with hope of zapping the ones causing all of the GVHD. Bella is going to have cataract surgery this month. This will hopefully make it easier for her to see!
No news is good news!!
Love,
Ledesma Family
Thursday, February 1, 2007 9:17 PM CST
Sorry about the security, We had some problems with spam.
Isabella had a great trip to Florida! She enjoyed seeing herself on television on Christmas Day and continues to remind us that she is a PRINCESS!!!
Healthwise, she is doing well. She still has the cough from November that has not cleared and was just treated for an ear infection, but other than that we are thankful. We have a clinic appointment next week and will find out what day she will go in for her protocol biopsy (I am dreading!). They take a sample of the kidney to make sure there is no sign of rejection.
She is enjoying school and coming home with all kinds of stories and adventures. She told me today that she wants me to talk to her teacher and tell her that the kids are eating her snacks at snacktime and she has none to eat. Bella said that the kids like the snacks she brings and want her to bring more from home... William has been busy as well. Today he thought it might be fun to put something else on his toothbrush instead of toothpaste. I told him to brush his teeth and after a couple of minutes I went and checked on him and he was still in front of the sink. I looked at his tooth brush and their was this cakey white stuff on it that I couldn't rinse off. I said, "William, what did you put on your tooth brush?" He pointed to the bottom cabinet where he tried to hide the evidence.....Diaper Cream!!! I don't even want to know if he tried it, gross!!
That's all for now,
Love,
Ledesma Family
Tuesday, November 28, 2006 0:19 AM CST
Princess Isabella had her Royal Party and is now ready to be a Princess at DisneyWorld. She is so excited! William keeps asking if it is time to go and continues to pack more and more toys in his carry-on!! Bella was showered with gifts, friends and family at her Make-A-Wish party. She loved every minute of it!! Thank you Make-A-Wish and our Sponsor for making Bella's Dream Come True!!!
We Will update when we return!!!
Love,
Ledesma Family
Tuesday, November 14, 2006 9:30 PM CST
Hello Everyone!
Quick Update...
Bella is doing wonderful!! Despite a month long respiratory cold, she is well! We seem to have that nasty cold that everyone has right now, but with Bella, we can't take any chances. This means she has had 2 chest xrays, antibiotics, nebulizer treatments, and 3 appointments due to this darn cold.
We are fortunate to say that Bella has been granted her Make-A-Wish trip to Disney World. She wants to be a princess and have a tea party with the disney princesses, a key to the castle and ride a unicorn. We also applied for a special program in which 5 girls get the Royal treatment at Disney, get to be on ABC for the Christmas Day parade hosted by Kelly, Regis, and Ryan Seacrest. Bella was selected to go and we are adding this to her trip!! What a dream come true!!!
As for us, we are doing great. William is growing and Bella too (4cm). We are extremely busy running the kids back and forth to school, dance, and swimming! Thanksgiving is around the corner, and WE ARE TRUELY THANKFUL! Hug your Kids often, and enjoy the moment!!
Love,
Ledesma Family
Sunday, August 27, 2006 10:27 PM CDT
Hello Everyone!
New Pictures!!! Isabella had a great 1st week of school. She loved every minute of it!! I thought she would be tired by the end of the week but she is eager for more. She has already learned a few sign language songs and practices them at home. She didn't like the fact that you don't go to school on the weekend. She did great during the week (didn't even cry)! She even wanted to try a hot lunch. Her classmates are very sweet. It looks like it is going to be a great year! She has a playdate with two of the girls tomorrow after school. It is so nice to see her so happy and independent!
William had his first day of preschool Friday and will continue tomorrow. He was so excited for his first day. In the parking lot, William saw the other kids and said, "Mom, Look! My new friends!!" It was precious. He enjoyed playing with the Oreo the bunny and was busy on the playground. His first week is focused on "learning about me."
Isabella continues to do well after transplant. She is now going to clinic every 3 weeks which seems like forever!! Her pericardial effusion (fluid around the heart) was gone which is great!! Her labs look good too. Everything is in the normal range with a creatinine of .2!
Please continue to pray for our family's recovery!
Love,
Ledesma Family
Sunday, August 27, 2006 10:27 PM CDT
Hello Everyone!
New Pictures!!! Isabella had a great 1st week of school. She loved every minute of it!! I thought she would be tired by the end of the week but she is eager for more. She has already learned a few sign language songs and practices them at home. She didn't like the fact that you don't go to school on the weekend. She did great during the week (didn't even cry)! She even wanted to try a hot lunch. Her classmates are very sweet. It looks like it is going to be a great year! She has a playdate with two of the girls tomorrow after school. It is so nice to see her so happy and independent!
William had his first day of preschool Friday and will continue tomorrow. He was so excited for his first day. In the parking lot, William saw the other kids and said, "Mom, Look! My new friends!!" It was precious. He enjoyed playing with the Oreo the bunny and was busy on the playground. His first week is focused on "learning about me."
Isabella continues to do well after transplant. She is now going to clinic every 3 weeks which seems like forever!! Her pericardial effusion (fluid around the heart) was gone which is great!! Her labs look good too. Everything is in the normal range with a creatinine of .2!
Please continue to pray for our family's recovery!
Love,
Ledesma Family
Sunday, July 23, 2006 9:58 PM CDT
Hello Everyone,
Sorry for the delayed update. We have been having so much fun with Isabella's new found energy. She is a new child. No more grumpy, tired, cranky and sad Bella. She now wants to be outside rolling down hills, flying kites, jumping, running, and playing. The steroids are being weaned and with that her temper is much better. She is now down to 7.5mg of prednisone a day. She will be forever on prograf and myfortic (cellcept) for anti-rejection. All together she takes about 15 medications twice a day. Bella will have her bladder stent removed next Thursday. It will be a quick procedure under general anesthesia.
Steve and William have been doing great. Steve continues to heal (had an infection at one of the probe insertion sites). He goes back to work tomorrow full-time. William has been busy playing with Bella. He has so much fun playing with his "new and improved" big sister!!! We have had lots of help and support from Aunt Rachel and cousin Jacob before transplant, Grandma and Grandpa Ledesma all the time, Grandpa Alan at the hospital, Uncle Brian and Aunt Paula-Ann for 4th of July, Grandma Chris and Grandma Clara helping with kids and home, all of our friends and Steve's work bringing in food. We can't thank you enough!!
Please continue to pray for Bella and Steve's recovery!!
Love,
Ledesma Family
Thursday, July 6, 2006 4:06 PM CDT
Hi Everyone!!
Isabella and Steve are making a remarkable recovery! It is amazing to see the transformation in Bella. She now has great skin tone, eyes are clear, and her body has been drained of all that fluid that her old kidneys couldn't process. She is still on a lot of medicines but nothing compared to being on dialysis and a strict potassium/salt diet. We never realized how much stress we were under until now....After kidney transplant life is much easier for us all. No more Renagel with every meal that contains phosphorus, no more cleaning Peritoneal catheters, no more Epogen shots and hearing her cry and scream, no more carrying supplies everywhere you go (just in case situations), no more going up and down the stairs carrying dialysis fluids/cases/supplies every night, No more worrying about someone feeding her high Postassium foods, No more telling her, "I am sorry Bella you can't have a drink you have already had too much," No more uncomfortable sleepless nights undergoing dialysis, No more dialysis machine beeping 2-3 times in the middle of the night to need adjusting, And for Bella best of all..no more drains and fills with outchie tummy all night. Our prayers have been answered and we are so thankful.
We can all start living a "normal" life. Isabella is planning to go swimming this summer and hopefully be ready for school this August. Make-A-Wish will be coming to our home to interview Isabella to see what magic they can make happen.
We couldn't have wished for more than this!!!
Love,
Ledesma Family
Tuesday, June 27, 2006 10:07 PM CDT
Grandma Diane again. We thank all of you for your journel entries and caring support. Isabella is doing so well that she may be discharged this Thursday. Today they removed the monitors and some of the other tubes so she is much more comfortable. Yesterday she was all smiles to finally be able to eat mashed potatoes and orange juice. Each day she is stronger and more alert and we are amazed that her recovery is so rapid. Let's hope and pray that everything continues to go well.
Friday, June 23, 2006 3:00 PM CDT
Hi Everyone,
This is Grandma Diane giving you an update on Bella's kidney transplant surgery that happened yesterday. The surgery lasted about 4 hours and both Bella and her donor, Steve, are doing well. Steve is taking short walks to visit Bella in PICU today and may be discharged later.
Bella's new kidney is working and producing lots of urine.
Her creatinine level has dropped to 0.2, which is great.
She is still drifting in and out of sleep and not eating yet but the docs say we'll see a big improvement in about 24 hours.
Thanks to everyone for their prayers and support to the family.
Sunday, June 18, 2006 11:20 PM CDT
Happy 6th Birthday, Isabella!!!
You have such a beautiful spirit that has touched so many people and we are so proud to be your parents!! You make us smile every day and fill each moment with magic. Today we celebrate you...a wonderful person, a survivor, a sister, and a loving daughter!!
We Love You!!! XOXO
Love,
Mom, Dad and William
Tuesday, June 13, 2006 0:29 AM CDT
Hello Everyone,
Sorry for the delay, we have been so busy with doctors appointments and getting things ready for the transplant. Bella and Steve get admitted next week (they moved it up a week)and we are getting very anxious and nervous. I am trying to get the house in order and everything organized so that family can easily find things when at our house. Grandma Diane and Grandpa Ray will be taking care of William while Bella and Steve recover. Hopefully, it won't be long. Please continue to pray that everything works out.
Love,
Ledesma Family
Thursday, May 11, 2006 12:48 AM CDT
We have a date!!!
June 28 is Bella's Big DAY!!!!
Steve is going to be the donor. We see the transplant surgeon tomorrow. Please pray that we stay healthy and that Bella and Steve's bodies remain strong!!!
Will update with more information after we see the surgeon!
Love,
Ledesma Family
Sunday, April 9, 2006 12:28 AM CDT
Labs for the week
WBC 19.0
HGB 9.5
plt 495
potassim 4.3
co2 24
Bun 44
creatinine 4.0
mag 1.4
calcium 9.3
Just waiting for results from wednesday's UCLA mixed lymphocyte reaction test. We will update when we have results. I finished my other follow-up exams... A VCUG to check for urinary reflux and another ultrasound to follow up on the previous ultrasound for my complex ovarian cyst. The tech said he saw no cyst...good.
Kids are doing well and looking forward to Easter. Please continue to pray that the doctors make the right decisions and that Bella stays healthy for transplant.
Love,
Ledesma Family
Wednesday, March 29, 2006 3:12 PM CST
Bella wrote a beautiful poem yesterday after being inspired by her favorite poetry book Heartsongs. I asked her to write about herself.
Isabella
Make me feel better
I am a princess
I am well
I live in a castle
I sleep in my own bed
My favorite color is pink
I like playing dress-up
I live with my Mommy in my house
I play barbies with my mom
I have a letter "B" on my flag
I am sweet
I like Dr. Kapoor
I like Dr. Ettenger
I am a good patient
I am a good princess
I like my nurses
I like my mommy
I like my brother
I am a princess
My mommy is a princess
I like scented lotion and make-up
Make-up is like a rainbow
I like hearts and sparkles
Chinese food and pepsi
I want a surgery
Give me a new kidney and
then I want to see my brother
I don't like spongebob or power rangers
No shots and no dialysis
Pink stars are my favorite
I thought she did a very nice job for her 1st poem!! Steve, Bella and I will have a test done called a mixed lymphocyte reaction culture test to look for a specific reaction between our cells and Bella's. We have this test on the 5th. Hopefully all goes well, we will have a donor. (Steve or myself) If Bella reacts to Steve's cells and not mine then they will use me. If she reacts to both of our cells they may want an unrelated donor because of the risk of GVHD activating. According to HLA typing, I am still the better match. Very complicated.
We are trying to plan a short mini vacation near Los Angeles so that if her transplant team needs anything from us we are within a short drive. Please continue positive thoughts and prayers so that her doctors will make the right decisions.
Love,
Ledesma Family
Thursday, March 9, 2006 2:36 PM CST
The pediatric renal transplant team is going to meet with the adult transplant team to come up with the best possible decision regarding my kidney. We are still waiting to hear back. Bella is doing well and is enjoying her home school. They changed her dialysis cycles to 11 in hopes to bring her creatinine down to 2.5 which will make her feel better. We are trying to work on Make-A-Wish for Bella. I asked her yesterday what she would wish for and she said, "First I would wish for a kidney then I wish I could drive a car (fancy blue) to a girly store that would have clothes that fit me. I would have no puffy face, belly, or feet!" That broke my heart. She loves clothes but lately when trying them on at the store she looks in the mirror and is sad about the way she looks. Of course, we reassure her that she is the most beautiful princess with or without a dialysis tummy. She has been through so much! She is also sad about her hair. It has been slowly thinning out. She keeps saying, "Maybe if I eat more, it will grow. Can I have a protein bar?" We don't know if it is GVHD or Kidney related.
William has been doing well too. He occasionally throws tantrums in which Bella replies, "William,(on floor)now that you are 3 you can't throw fits on the floor...you have to throw them on the couch." I thought that was cute. William was in the car listening to the radio and he heard the radio man say "Come on down and get your new Toyota." He then told me, "Mom I want to go get my new Toy Yoda. Let's go get a Toy Yoda!! Kids are so cute!
We will update when we have more information.
Please pray for Bella and her doctors.
Love,
Ledesma Family
Sunday, March 5, 2006 10:49 PM CST
Well....
After the Surgeons had their meeting friday they decided my anatomy (3 arteries 1 vein on left kidney and 3 veins 1 artery on right kidney) will be a difficult surgery. The majority of people have one vein and one artery. They can do the surgery but decided that they will work Steve up and weigh the pros and cons. (mine being a better blood match) Steve potentially have better anatomy. My three arteries will have a higher risk of clotting than one artery. Bella would be on alert for the week after transplant due to clotting if they choose my kidney. As for Bella, she is finishing final rounds of labs, echo, and ultrasound. I have to follow up with an ultrasound (check my noted ovarian cysts) and a urinalysis to make sure my infection is gone.
Please pray that Bella's doctors make the right decision and that we continue to stay healthy.
Love,
Ledesma Family
Sunday, March 5, 2006 10:49 PM CST
Well....
After the Surgeons had their meeting friday they decided my anatomy (3 arteries 1 vein on left kidney and 3 veins 1 artery on right kidney) will be a difficult surgery. The majority of people have one vein and one artery. They can do the surgery but decided that they will work Steve up and weigh the pros and cons. (mine being a better blood match) Steve potentially have better anatomy. My three arteries will have a higher risk of clotting than one artery. Bella would be on alert for the week after transplant due to clotting if they choose my kidney. As for Bella, she is finishing final rounds of labs, echo, and ultrasound. I have to follow up with an ultrasound (check my noted ovarian cysts) and a urinalysis to make sure my infection is gone.
Please pray that Bella's doctors make the right decision and that we continue to stay healthy.
Love,
Ledesma Family
Thursday, February 23, 2006 12:37 AM CST
Happy 3rd Birthday, William!!!
William enjoyed his party Sunday with friends and family. He loves Thomas the Train and enjoyed his Thomas cake. Grandma Clara and Grandpa Clayton came up from Arizona making it a special party.
I completed all of my tests (labs, ekg, x-ray, CT, nephrologist and psychologist) and should know by tomorrow when I get to meet the transplant surgeon. If all goes well, we are looking at the end of march - beginning of april for surgery!!! Getting Closer! Please pray that we all stay healthy!
Love,
Ledesma Family
Friday, January 20, 2006 11:52 AM CST
We have got the green light!!
Bella's transplant is a go. Dr. Ettenger her kidney transplant Dr. and Dr. Moore her BMT Dr. came up with a plan of care Tuesday. Bella will have her labs drawn at UCLA on Wednesday for T-cell subsets to see how bad her GVHD is. We have follow up appts. with both of them. They want to do another Bone marrow aspirate 4 weeks before transplant to make sure she is in remission. This is all very exciting. Bella continues to get her "regular" care at LA children's and has an appointment on wednesday for zenapax. UCLA decided the immuno drug of choice for her will be compath. I guess it is a new drug that they haven't tried as much because most of their patients respond to zenapax. Bella is already on zenapax.
Please pray that all is well with my body and that I am able to give Bella a new beginning!!!
Love,
Ledesma family
Monday, December 12, 2005 0:04 AM CST
Merry Christmas!!!
Isabella had her consultation with UCLA BMT. They want to run a few more tests on her including fungus titers and possible full body scan to make sure there is no infection hiding out. Hopefully, all will go well and Bella will be on her way to a new kidney. She is so excited about her new kidney that she has even planned out her first meal after transplant.....Potassium dinner. (Bananas, chocolate, milk, oj, artichoke...go figure, french fries....and don't forget, lots of fluid!!) She is such a sweetie!! We go to CHLA on the 14th for Zenapax and dialysis clinic. Other than that, no news is good news for BMT patients!!
Bella and William look forward to spending Christmas with their cousins Julia and Evelyn. They also get the luxury of Grandma Chris and Great Grandma Clara and Grandpa Clayton for Christmas and New Year's. The kids are going to have loads of fun. This year Bella asked Santa for a Barbie book and William asked for Star Wars Chewbacca and Robots. I think they made it on Santa's good list this year :} Mommy did too, we got our new Land Rover and the kids and I are loving it!! Steve and I can't wait to take it up to Big Bear this winter.
Wishing everyone Health, Happiness and Love!!
Love,
Ledesma Family
Sunday, November 13, 2005 10:54 AM CST
Hello everyone!
Isabella is doing well with her dialysis, but hates the fluid restriction. It is so hard to hear her cry and want a drink but I have to keep her at about 600cc a day. She now likes ice chips but it is hard to go anywhere without seeing people gulping down drinks. "Mommy, when I get a new kidney, I can have whatever drink I want....and french fries too!!." Hopefully soon!! We are still working on donor information and lab stuff with UCLA. No date has been set and they still have not told us who will be the donor. Medically, she is doing okay. Her rashes come and go but with the help of her creams they are under control. We are very fortunate that she is such a good pill taker! We have reduced her epogen to once a week but continue with blood pressure medicines. Her anti-rejection meds are the same, Rapamune .5, predisone 5mg every other day, and prograf every third day. We have this wacky schedule to her antifungal medications that raise the drug levels of the anti-rejection meds.
She is becoming quite playful now which is so nice to see. Taking the clonidine patch off made a dramatic difference in her personality, activity, and disposition. It is a lot less stress for our family....Thank goodness for norvasc and enalapril!! William has been very busy playing and enjoying preschool. This will be his last month of school due to the cold/flu season. We want Bella to be as healthy as possible before transplant. Whenever she gets a cold, it flares her GVHD. Her flu shot gave her a local gvhd rash, so she is very sensitive.
We got to enjoy the luxury of taking a mini vacation to the Bay area. Of course, this involves hauling a dialysis machine, 4 Baxter boxes of supplies, and our luggage. You would have thought we were leaving for a couple of months. We celebrated Bella's cousin Julia's 4th birthday and also got to see Auntie Cheryl run the Nike Women's marathon for Team in Training. Cheryl did such a great job, we are so proud of her. She raised over $5000 for the Leukemia and Lymphoma Society. Way to Go Cheryl!!!
As for us, Steve and I are doing great. We will be expecting Grandpa Alan here for Thanksgiving along with Uncle Bruce, Aunt Cheryl and cousins Zach and Nathan. I hope everyone has a Wonderful Thanksgiving. Steve and I have a lot to be thankful for.. Friends, Family, Health, Joy and of course each other.
Love,
Ledesma Family
Monday, October 17, 2005 2:15 PM CDT
Isabella's spinal tap and bone marrow look great. They still do not know why she has an elevated WBC. We will continue going to clinic every two weeks for zenapax infusion. We only have to give epogen shots twice a week now and Bella is thrilled about that!
Hope all is well,
Ledesma Family
Sunday, October 9, 2005 9:21 PM CDT
Isabella will have her bone marrow biopsy and spinal tap tomorrow at 9:00 a.m. but we have to leave here at 5:30 to beat the rush hour traffic. Hopefully everything will go smoothly. She usually is pretty sore and cranky after the procedure. Grandma and Grandpa Ray are babysitting William for the day so he will enjoy playing trains. He has a cold, so it is best to keep them seperated as much as possible. Please continue to pray that her marrow is clean.
Love,
Ledesma Family
Wednesday, October 5, 2005 3:40 PM CDT
Isabella has her kidney transplant evaluation tomorrow. Hopefully all goes well!! Her bone scan came back negative for infection and her arm has stopped hurting. They stopped the vancomycin, but her WBC continues to stay at 20-30,000. With this information, the doctors want to do a bone marrow aspirate and spinal tap to make sure her cancer has not come back. She seems to be feeling fine. She has an occasional headache but doesn't complain of feeling bad or aching. She is very active and has not been feeling tired or run down (All signs of leukemia) Her platelets have remained high and her differential has been normal. Please pray that all of her tests come back clean and she continues forward to transplant!!
Love,
Ledesma Family
Sunday, September 25, 2005 10:05 PM CDT
Hello Everyone,
We have been working with CHLA to get Isabella's transplant information sent to UCLA so that we can continue our way to a new kidney. Approval came friday for transplant so now all I have to do is call UCLA for an appointment. We have been fighting an infection in Bella's arm for about month and they are ordering that she have a bone scan of her whole body done to make sure there is no infection hiding out. They are doing this because the infection keeps coming back. We are on every 4-5 days IV vancomycin.
Please continue to pray for Bella's kidneys and her infection in her arm. Thank you for checking up on us!!
Love,
Ledesma Family
Monday, September 12, 2005 4:47 PM CDT
Isabella continues her dialysis and is looking better as you can see from the new picture above! We go in for labs/zenapax on wednesday. It is also our once a month dialysis clinic day in which we see the dietician, nephrologist, and the Peritoneal Dialysis nurse. We bring in our procard disk from our dialysis machine and they can view all of her daily dialysis data (this means we cannot cheat on any fluids, because the computer will reveal our errors!) Over the weekend Isabella had to get an IV dose of vancomycin due to an iv infecion prior to her dialysis catheter placement. The vancomycin lasts a long time in renal patients because their kidneys do not clear out the antibiotic. This means she only needs one dose to last her 2 weeks. Her white count with this infection went up to 27,000. Hopefully with the antibiotic on board it will come down to normal for this wednesday lab draw.
A big thanks to Grandma Clara and Grandparents Ray and Diane for helping us through all of this dialysis stuff. You all have been so helpful in watching Bella while we were learning Dialysis treatment and for taking care of William while we take Bella to appointments!!
That is all for now!
Love,
Ledesma Family
Monday, August 29, 2005 7:01 PM CDT
Home Sweet Home!!
After 3 weeks in the hospital we are finally home. Isabella is doing well now that she has started peritoneal dialysis. When we were admitted the doctors tried for a whole week to get the fluid out of her body but it would not respond to any of the medications. She had so much fluid that it filled her lungs and required oxygen for 2.5 weeks. They placed the new catheter in her belly 2 weeks ago and with that, they removed about 4 liters of fluid!!! She looks like that little girl I remebered 3 years ago. The doctors are amazed how much better she looks. Dr. K said, "Wow she looks like her mommy." Steve replied, "Oh great, when she is puffy she looks like me but now that she is thin she looks like Ceyonne??" Anyway, we are on our way to transplant and Steve and I have been HLA typed. I am a better match than he is but we will have to do further testing to see if I can donate. With our insurance, we have to switch to UCLA because that is the hospital they have contracted with. So we have to meet a new transplant team and get all of her records sent. Please pray that Bella can gain a few lbs. and start to get stronger before transplant!!
Hope to update sooner!!
Love,
Ledesma Family
Saturday, August 6, 2005 7:04 PM CDT
Well,
We just went through a time in our lives that I would never want to go through again!! Bella's potassium climbed up to 8.8 which stopped her heart 5 times for aprox 1 min each episode. We called 911 from our home when she started shaking and then went I picked her up she went completely limp and unresponsive. I thought she had a seizure of some sort but then she woke up talking as if nothing happened. Before all of this happened she was playing with her friend Hedi and running around the kitchen. I am so thankful that my friend Heike was there who is an ER physician and Steve was home as well. When the paramedics came she answered the door with a "hi, what are you doing here." While transporting her to the ER, she started doing it again..shaking, drooling at the mouth, spasms and then complete nothing...Very, Very Scary. I thought we had lost her. The paramedic fortunately started an IV and when we arrived at the ER she was talking again. They hooked her up to the monitor and Bella was telling us that is going to happen again, then would scream NO Daddy...Mommy and on the monitor it would show her heart rate go up to 250 and then 0, flatline for at least a minute. They rushed the crash cart into her room where at least 15 people were gathered yelling drug dose information and pumping her full of atropine, calcium, and bicarb. I could not believe what was happening it was all in slow motion. She did this 2 more times before finally the drugs kicked in and she was stable. I have to say out of everything we have been through this was by far the worst!!! They now try to keep her potassium in the 3-4 range and also monitor it 3 times per week. She gets admitted for Zenapax on Monday for at least 1 week to make sure it is not this medication that is making her labs go wacky!! Steve and I have been worked up for kidney donation. Hopefully our HLA typing will match her new bone marrow.
Please pray that everything turns out for us.
Love,
Ledesma Family
Tuesday, July 5, 2005 9:06 PM CDT
So much for an uneventful Fourth of July!
Isabella spent her weekend in the emergency room
with a potassium of 8.4....Yes I did say 8.4. This
caused agressive treatment with Ka-ex, breathing treatment,
ekg, and insulin. Her potassium has come down but now we
are dealing with another problem. She is complaining about leg and arm pain. Her eosinophils went up to 30% and she has a hard time walking. We see LAChildrens tomorrow so please pray that it is nothing serious!!!!
Love,
Ledesma Family
Wednesday, June 1, 2005 8:31 PM CDT
Sorry for the long delay...
Isabella is doing well. She is probably going to need another dose of zenapax becuase her swelling is starting to come back. So it looks like we will be on track for every two months zenapax infusion. She will have a follow-up Echo to make sure the swelling around her heart is not getting worse and then her 3 year (yeah!!!) BMT routine check-up exams (eye, endocrine, neuro, hearing...etc).
Bella will be celebrating her 5th Birthday this month and we are planning a lovely My Little Pony Royal Tea Party!!! She is very excited!! She also will start home school kindergarten this fall (all though she tells me she wants to get on the school bus and go to the Big Girl school). The doctors do not want her in class while on Zenapax. They are worried that Kindergarten is the year that most kids are exposed to dangerous viruses.
Hope you all have a wonderful day and thanks for checking up on Bella!!!
Love,
Ledesma Family
Saturday, April 9, 2005 10:12 PM CDT
Hi Everyone,
I know you have all been waiting for my entry!! Isabella is finally home after a short stay at Children's Los Angeles. It all started Tuesday evening when we noticed that Bella started breathing faster (54 pm) then she would start grunting. We took her to the emergency room thinking it was probably a low hgb (in clinic last wed it was 8.6). When we arrived her O2 stat was 90, no fever, and normal b/p. The ER dr did labs and also a chest x-ray. Her labs came back w/ a "normal" creatinine 2.7 but her potassium was a whopping 7.4. After a dose of K-ex (to get rid of potassium) the chest x-ray came back saying that there was fluid in the lungs. Next, they did an echo and ekg of the heart. The report came back with atrial collapse and large effusion. After we heard that I ran home and packed our bags. They called for transfer and it should be an hour before they could get there. While packing, Steve called and said, you better hurry, they are sending a helicopter because there were no ambulances. Bella and I flew to CHLA and in 20 min we were there in the PICU. We spent one night there and then were sent to the Bone Marrow Transplant Unit for monitoring. Meanwhile testing done there proved no atrial collapse but moderate effusion (fluid around the heart). She needed oxygen for 2 days and then finally could breathe with room air. Conclusion, They think because of her kidney problem fluid built up in her lungs this time instead of her feet, hands and face. We have to carefully monitor her weight and keep her at 33-34lbs. Hopefully, this doesn't happen again because it means we are coming closer to kidney transplant.
Please keep Bella in your prayers.
Love,
Ledesma Family
Tuesday, March 29, 2005 9:54 AM CST
Just a note to say, We are home!
Isabella is being treated for her CMV infection with gancyclovir. The infection was only positive in one of multiple biopsies of the gut. It was not in her blood or stool. The doctors still insist that she should continue the medication zenapax for GVHD control and they will try to cut down on the kidney toxic medicines prograf and prednisone. This means that we have to be more careful with visitors to make sure she doesn't get sick. Zenapax is an immunosupressive drug. This means that she is on a few more medicines too, Cipro and Fluconazole. She will continue treatment for CMV until her antibodies recognize the virus. That is it for now.
Please pray for Bella's recovery and also for her suite mate, Sammy. Sammy is a cute little 15 month old battling Neuroblastoma.
Love,
Ledesma FAmily
Saturday, March 19, 2005 7:05 PM CST
I am updating from home while Steve is at the hospital with Bella. We have been in the hospital for almost two weeks and will probably stay at least until wednesday, depending on how they want to treat her. The biopsy of her gut proved no GVHD, but they did find low amounts of CMV. None of her stool samples grew out CMV so it is contained to the tissue in her gut. They are testing her blood to see if CMV (virus that most everyone has that usually just causes a little cold, but in immunocompromised patients can be very serious) is in there and if it is they will definitely start her on antiviral medication. She has a hard time with her medications and gets a lot of them by IV. I spread out her pills and liquid medicines by giving them every 30 minutes. Her creatinine went up to 3.6 (kidney function, usually 4 means dialysis). Please pray for her kidney function to recover and her body to clear this CMV.
Love,
Ledesma Family
Tuesday, March 8, 2005 10:54 AM CST
Quick update,
Bella is still having stomach problems. She is in the bathroom at least 3 times per night and ocassionally vomits. I took her to see the BMT team yesterday and they want to do an endoscopy (sp?). They want to have her admitted and get her under control (next week). The GI people will search for viruses, bugs, parasites in the gut, but they think it will show gvhd. They told me if she vomits and poops today she should get admitted this morning. Of couse, she did not have any stool in the night and nothing this morning. If it is GVH, they said we should think about using Zenapax. This is a strong immunosuppression medication.
Please pray for Isabella's gut to recover!!
Love,
Ledesma Family
Saturday, February 19, 2005 0:24 AM CST
Sorry for not updating sooner!
Isabella improved for apx 1 week, then she started with the same vomiting and stomach issues. But this time it didn't last as long. I don't know if she got another stomach bug, or if it is GVHD. The vomiting stopped but the loose stools continue (1-2 times per day). Her hemoglobin is down again to 8 so they increased her epogen. I don't know if the virus, GVHD, or kidney problems that keep causing her blood to drop. When her hemoglobin dips down below 9, she gets very cranky. (I should say crankier than usual) On average she says she feels bad. I long for my punky spunky girl. (I have not seen her since before transplant!!!) She bruises very easy. While sitting at "Winnie the Pooh's Heffalump" movie she had her legs crossed the entire show and afterward, complained that her leg was asleep. When looking at it, there were little dots all along the spot where her shoe was rubbing against her calf. Her platelets are 170, so it is not a platelet problem. ???
William had his #2 Birthday. He had a great time with his sister, and cousins. We kept it very small due to Bella not feeling well. He had an "Incredible" theme. He loves Mr. Incredible. Of course, he has all of the incredible toys. We are waiting for March, that is when the DVD comes out!!
We have enjoyed Grandma Clara and Grandpa Clayton out here from Colorado. They spent the week with us, but again...RAIN. Whenever they would call from colorado I would tell them oh, it is sunny and 75 today...just like every day. But, they bring the rain with them every visit. They leave tomorrow, and I will miss having them to visit with and the kids will miss playing and reading with Grandma! You don't get a lot of social activity as a BMT parent, so family is the BEST! Steve and I had a great time on our mini vacation away from the kids. We also enjoyed spending two nights at Disneyland with Grandpa Ray and Grandpa Diane. The kids had a great time.
Please send your postive thoughts and prayers to help Isabella's gut recover and that her kidneys will grow along with her body.
Love,
Ledesma Family
Tuesday, January 18, 2005 10:34 AM CST
Isabella has had a rough two weeks. She went to school on the 5th and started vomitting. Fever soon followed and we had to go to the ER. They did blood cultures from her line and all were negative. They gave a dose of Rocephin but found that her potassium was 6.9. After a dose of k-ex, they told us to follow up the next day for another dose of Rocephin. They drew labs while giving Rocephin and found that her hgb dropped to 7. They gave her a blood transfusion. The next day she had a lump near her catheter. Can you guess what comes next? Catheter removal. She continues to have vomitting and poops. Today I am calling the BMT to see if they think it is GVHD and to ask if they want to give her fluids. She has an appt on Friday, but I asked to see if they can move it to Wed. (clinic is only open MWF) Couldn't she get a break???
Despite all the chaos, Isabella enjoyed swimming in the bathtub with no broviac. She had her first shower and finally had her first bath with her little brother. She tells me, "Nanny nanny boo boo, you can't flush my tubies." She is pretty happy about that. But we are all tired and worn out!! Please pray that things will get easier for our family and that Bella will recover from this vomitting and poop!!!
Love,
Ledesma Family
Saturday, January 1, 2005 10:27 PM CST
Happy New Year!!!
2005 is here, I cannot believe that it has been 2.5 years since Isabella's transplant. I am so thankful for that. We got to bring in the new year w/ my grandparents from colorado Gma Clara and Gpa Clayton. We enjoyed going to Solvang, a little Danish town and will go to the Ronald Regan library tomorrow. It has been raining hard every day so our choices are very limited in what we can do. But sometimes it is nice just to stay inside and visit over coffee!
Isabella had her visit with Bmt, cardiology, nephrology, and surgery. Gma Clara and Gpa Clayton babysat William while Steve and I took Isabella to the doctors. BMT visit went as usual....wait, wait, wait and then after 1 hour we see the Dr. She said everything looks okay and to continue the creams for the rash. She put in a referal for endocrinology because her T3 is a little low. Nephrology went fine and they decided to up her epogen to 750 because of a hgb of 9.5. They are going to wait two months to see if she grows any and then decide to start growth hormone if there are no results. She has grown 1 cm from last year. Her kidney disease prevents her from growing. They will start growth hormone and catch her up to the 50th percentile and then stop. This means a shot every day. Isabella will not be happy with us. She already gets a shot once a week for epogen. Her creatinine has gone up to 2.9. and bun to 70. Cardiology said everthing looks the same. She still has fluid around the heart which needs to be monitored. Jan 12, Dr. Stein will be taking Isabella's broviac out. (if she is healthy, please no colds) Finally!!! In her little life she has had a catheter longer than she has has been without!! (That is about to change!)
I hope 2005 brings all of our families happiness and health and that our hardship becomes part of the past!!
Love,
Ledesma Family
Saturday, December 11, 2004 11:15 PM CST
Hello everyone!
Happy Holidays and a healthy new year for all!!
We made it back from our vacation and have been busy ever since! The kids had a great time seeing family. They especially liked playing with their cousin Jacob. Bella and William enjoyed the snow but at the end of our trip Isabella said, "Mom I am ready to go back home so I can be warm!!" We drove home in a snow storm and endured snow packed and icy roads. Steve was tired of me telling him how to drive and would remind me to read my book. :) We are home and Bella now complains, "I am too hot!" It was a beautiful day today. We enjoyed strolling in Santa Barbara and the children visited Santa. Isabella asked for a care bear and William said, "Trains." We will see what Santa brings....wink wink.
Isabella has her cardiology visit tuesday and then follows up with BMT, Surgery and Nephrology after christmas. Then we start the new year with denistry and opthamology. It is never ending for the BMT patient. Speaking of BMT kids, We saw one of Bella's camp friends, Amanda, at the mall today. It was nice to see her looking good. As a BMT family, it is a slow process to "recovery." Some people ask me how we do everything we do and I say, "This is 'normal' now for us" Sometimes I think back to what our life was like before AML and I wish it could be like that again, but we are so fortunate for Bella's life and for the medicines that have kept and will keep her alive!!
Please pray for all the children in the hospital this holdiay and that they will be blessed with good health and for families that have lost their child to this horrible monster cancer.
Merry Christmas!
Ledesma Family
Sunday, October 17, 2004 2:34 PM CDT
Hello everyone,
Just a quick update,
Isabella and William are excited for Halloween.(so is Steve) They put Lights and pumpkins outside yesterday. Bella enjoyed going to the pumpkin patch with her school. They took a hay ride around the farm and talked about pumpkin seeds and how pumpkins grow. We are looking forward to hosting a Halloween party this year if everyone is well.
Healthwise, Bella has a bit of a cold which has caused some gvh. She rashed up on her hands and has had some loose stools. Hopefully, as she gets better these will go away. We all received our flu shots last week, and hopefully we will avoid the flu on our trip this fall to Nebraska. (cross our fingers!!!) We are driving instead of flying. We are planning on taking Bella's broviac out before we leave, we will meet the surgeon and discuss when we can get in and what risks we will have. (it has been in there for 3 years) The surgery will be in los angeles.
We will be going to Cousin Evelyn's baptism next week. Steve and I are excited because we are her godparents. Hopefully, the kids will be fine on the drive up!
Thank you for all of your thoughts and prayers.
Love,
Ledesma Family
Friday, September 24, 2004 3:20 PM CDT
Bella has made a lot of progress lately. She has learned how to jump, do a summersault (sp?), and step up from the garage to the house without holding on to anything. It is so nice to see her moving forward. Her medicines are about the same except for the predisone. It has been tapered off to 5 mg one day and 0 the next. Hopefully we can get off them soon. (she continues to get itchy skin and rashes) Her labs are about the same with a creatinine of 2.3 and Bun of 70. Her hgb is quite high 14.9, so they are stopping the epogen for 2 weeks and then reintroducing it at a lower level. Her height is still 89 cm where it has remained for the past 2 years. She now will see a cardiologist every 2 weeks for follow-up care of her newly diagnosed fluid around her heart. (periocardial efusion (sp?)) She also has LVH from her high blood pressure. (left ventricular hypertrophy)Her kidney disease and cataracts remain stable. So we keep very busy between extracurricular activities and nephrology, bmt, cardiology, opthamology and endocrine doctors there is not much time to do anything else.
William is doing great. He is very active as most 19 month old toddlers are. He loves playing outside in his water box, running through the sprinklers, and wrestling his big sister. He has an infectious laugh the can make anyone giggle. William admires his big sister and tries to do everything she does. (including dressing up in princess outfits) Steve made me run to the store and go buy more "Boy" toys, but he just loves to copy Bella. When I take Bella to the doctors, he goes to grandma and grandpa's house for reading, swimming and relaxation (he takes 3 hour naps for them). Overall, he is a very mellow and easy going little guy.
That is all for now,
Please pray for Isabella's health and for the health of all children battling illness and disease.
Love,
Ledesma Family
Monday, September 13, 2004 9:37 AM CDT
New pics in the album!
Hello Everyone,
Just a quick update,
Bella just got back from camp Reach for the Stars. She had a wonderful time. Of course, her favorite activities were making bead necklaces and sitting at the craft table doing all sorts of neat crafts. We stayed two nights in a cabin and sat by a campfire each night. Isabella thought that was pretty cool. Bella's teacher from preschool signed up to be with our family so it worked out great because Isabella already new her that way Steve and I could indulge in massages and facials while Bella played outside with the kids. Overall, we had a great time and can't wait to go back next year!!
Love,
Ledesma Family
Monday, August 30, 2004 10:14 AM CDT
Hi everyone.
New pics. We went to the Santa Barbara Zoo yesterday. Bella and William enjoyed running around, riding the train and best of all the animals. William's favorite animal was the giraffe and Bella's the leopard. We had a nice time.
Last week Bella enjoyed going to Los Angeles and attending the Disney Princess tea party at the El Capitan theatre. Grandma Diane enjoyed watching Bella see Snow White, Cinderella,Sleeping Beauty, and Ariel. She was so excited to see the princesses that she did not want to eat or drink. It was very fancy inside and cutely decorated. She enjoyed trying on little dresses and putting on lipgloss. It was very cute to see all of the little girls dressed in their favorite princess outfits.
Isabella had her first peripheral blood draw. She screamed the entire time. Unfortunately, they had to redraw it through her line because the potassium was too high. (7.1) After drawing it through her line, it was 6.5. Time to take yucky potassium medicine.
Other than that, we have been busy looking for furniture. We spent most of our vacation searching for living and dining room pieces. Hopefully, we will come across something we like!!
That is all for now,
Love,
Ledesma Family
Tuesday, August 10, 2004 10:00 AM CDT
Hi Everyone,
Isabella and William had their first overnight visit with their grandparents. Everything went very well until it came to Bella's bedtime. I guess she kept her grandma up until 3:00 in the morning!! Nextime, I will send benedryl. Steve and I had a nice time with our friends. We enjoyed Reggae night at the Hollywood Bowl.
We are now considering taking Isabella's central line out. We are going to have a peripheral blood draw next week to see if she can handle it. If that goes okay, we will then try epogen shots. (right now she gets it IV) I hope she does alright and we can move forward to normalcy.
Love,
Ledesma Family
Thursday, August 5, 2004 12:28 AM CDT
My Cookie Monsters!!
Everything is about the same for Isabella. Her labs continue with a creatinine of 2.3, bun 92 and hgb of 10.5. Bella and William have been very busy. Bella picked out a Rainbow Brite at Target and they have been the best of friends. We even got her to sleep in her own bed with Rainbow Brite!! Who knows how long that will last!! She goes through spurts of sleeping in her bed. William has found a new love....his own vaccum. I picked one up at the toy store and he has been vaccuming ever since...I think 3 days now!! He screams when I try to put him in the car because "vacu" cannot come. Kids!!
Congratulations to Aunt Paula-Ann and Uncle Brian with the birth of their second Healthy daughter, Evelyn Marie. She was born on the 3rd and is doing great. We are planning to go see them in a couple of weeks. (Depending on Bella)
That is all for now,
Love,
Ledesma Family
Friday, July 16, 2004 12:21 AM CDT
Hello everyone,
##New Pics in album##
As you can see from the new picture, Bella was a beautiful flower girl!! She did a great job with her friend Emmaline. They took their job very serious and it was so cute. Bella danced the night away and she probably would have danced into the morning hours, but we had to go to bed!! Congratulations Johnny and May!!
Please say extra prayers for my sister-in-law, Paula-Ann. She is expecting her 2nd baby the end of august, but started having contractions early. So we need all of your positive thoughts to keep the baby in longer!!! This is her third day in the hospital.
Isabella is doing great, medically. We are going to CHLA now 1 a month. We will see how it goes. We went to Long Beach and visited the aquarium of the Pacific. The kids loved it. Too bad it is such a long drive, otherwise, we would have a season pass. Yesterday, it was so warm here that I took the kids swimming pool out. I only filled it with about 3 inches of water and Bella and William had a blast.
That is all for now.
Love
Ledesma Family
Tuesday, June 29, 2004 12:58 AM CDT
Yeah!!
Today is Isabella's first day at PreSchool!!!
We packed her lunch and her snacks last night and she was very excited for school. When I dropped her off this morning she said, "Bye Mommy, where's my lunch box...I want to eat my lunch now." Hopefully, she can last until lunch time!! Bella, Mommy and Daddy are so proud of you!! I remember when she first got sick, It seemed like school was such a far off dream! Look at you now Bella!! I will post pictures of her first day of school! She only goes Tuesdays and Thursdays, but it is a start!!
After school, she has her hearing test. She gets this done every year because she is on lasix, a medicine that can affect your hearing. She also goes friday for iv iron. That will be her last dose for a while. Her labs look about the same. She had a weird note that said her blood had hyposegmented polys. I don't know what that means, but I put a call into the office...they have not called me back. She also has an MRI of the brain, neuropsychology, and an ekg test all coming up. Please pray that all of her tests come back A-okay.
That is all for now, I have to get ready to go pick up the school girl!!
Love,
Ledesma Family
Thursday, June 17, 2004 12:23 AM CDT
Hi everyone,
We made it home and everyone is well. Isabella and William miss their grandparents, aunts, uncles and cousin Jacob!! The kids did very well on the airplane and there were no delays.
We are now preparing for Isabella's birthday party here in California. It will be lots of fun. Bella's cousin Julia is coming down and staying down at our house. This will be a lot of fun for the kids.(They don't have many playdates) Uncle Brian, Aunt Paula-Ann, Steve and I, hope to get away for an evening and let Grandma Diane and Grandpa Ray babysit.
Overall, Bella looks really great. She had an eye visit tuesday, and they found a cataract in each eye. He said that she meets the requirements for surgery, but he wants to see her back in 6 weeks. I don't know how that will affect her GVH. I will have to get more information. If anyone knows anything about this, please let me know.
Love,
Ledesma family
Friday, June 4, 2004 10:53 PM CDT
We are here on vacation!! We made it.
(NEW PICTURES IN THE ALBUM)
Isabella is having a grand time with her grandparents, great-grandparents, and aunt Rachel and uncle Scott. She especially enjoys her cousin, Jacob. They have stayed up every night playing together and sharing hugs and kisses. Jacob is very protective of Bella. When Isabella throws a steroid temper fit, Jake says, "Grandma, hurry...Bella's hurt!" William and Jake chase eachother and play hide and seek. He likes having another boy around doing "guy" things. (chasing kitty Max, playing in the pond, and romping in the park) The kids have enjoyed a Shrek party, celebrating Isabella's birthday, and having grandma and grandpa as short order cooks.
We leave tomorrow for Denver and will spend our last few days visiting family, friends, and the hospital. We look forward to more vacations and trips back home. Hopefully, our airplane will not be so delayed on our return trip (Our trip here we were delayed 1 hour and that caused us to miss our plane in los angeles which left us waiting with two cranky kids. Finally on the plane, there is a thunder storm in Denver and they cannot leave so we sat on the plane for another hour before take off.)
We will update with more vacation news when we return home.
Love,
Ledesma Family
Sunday, May 23, 2004 10:58 AM CDT
HAPPY TRANSPLANT BIRTHDAY, ISABELLA!!!!!!
Mommy and Daddy are so proud of you. We love you sooo much!!
We finally have some good news regarding lab work. Her growth hormone study came back showing a 10 and 13. They like to see at least one number over 10. This means that her body is producing growth hormone and that part of the brain was saved from radiation. She is still on steroids and also has her kidney problem which keep her from growing. The doctors have to get together to see what we need to do next.
6 more days until VACATION!!!!!
Love,
Ledesma Family
Thursday, May 13, 2004 1:26 PM CDT
Hi,
Just when you think everything is going well....
We had to stay overnight at the hospital due to her blood transfusion causing high blood pressure. Her pressures are still high, and now the doctors are going to have to juggle more medicine. While in the hospital (we think) William picked up the cold sore virus and now is staying with Grandpa Ray and Grandma Diane until he is better. It can cause great complications in Bella so we are isolating them. This has actually left me with time to update the website. It is amazing what I can get done around the house now!! Poor William cannot eat but is still taking a bottle because of the pain in his mouth. They say 85% of the population carries the virus. Bella is on acyclovir so hopefully that will ward off the virus.
We are looking forward to going on vacation, but if Bella gets this virus then she has to be admitted for IV meds. Please pray that Isabella will NOT get the virus and we can go on vacation!!!
Thats all for now!
Ledesma Family
Thursday, April 29, 2004 11:37 AM CDT
Hi everyone!
Here are the latest counts.
hgb 8.2
wbc 10.7
creatinine 2.4
bun 45
co2 20
Bella went in on saturday to have her broviac repaired. Friday night I went to flush it with heparin and it started to leak near the clave. It had a small hole, so I immediately clamped it and then used a second clamp above it. Luckily, they could make the repair and we didn't have to go in for surgery!! Her HGB is low and they are now considering transfusing her or giving her iv iron, so that the epogen will work. Her GVHD looks good and hopefully after vacation....yes, I did say vacation, we can go down on steroids. We are going back to Denver the end of May, and going to see all of the wonderful staff and friends we have made. She has an appointment with her Drs. at Childrens Denver for a second opinion on her care. We hope to see her oncologist as well to show her how great Isabella looks!! Also being at clinic and on the floor gives other children and parents hope for brighter days to come!!! We then will drive to my parents in Nebraska!! It will be my first time back home in almost 3 YEARS!!! We are all very excited!!
William is a walker!! He is now walking everywhere. It is quite exciting. Bella and William are going to start a preschool program this fall. It is only for 2 1/2 hours so Bella can wear her mask for the duration. I will have some time to myself...what will I do??? The 4 year olds tower over her and are very active. I am considering the 3 year old class until she gets used to school and children. I think she is going to have a great time.
That is all for now,
Love,
Ledesma Family
Thursday, March 25, 2004 11:10 AM CST
Hi Everyone,
Isabella is doing much better, We still have mild gvh skin rash, but her counts look good. Yesterday she had her appointment and they said that she looks pretty stable! Stable is good in the world of BMT!! The nurse took her vitals yesterday and when doing blood pressure asked, "Do you want me to put this on your bare skin? Bella understood it as "Bear" skin. She replied, "I don't have bear skin, I have Kid skin!!
William took his first 4 steps. Here pretty soon he will be chasing after Bella. Other than that, No news is good news!!
love,
ledesma fam
Saturday, March 6, 2004 11:59 AM CST
Sorry for not updating, but we have been in the hospital!
Monday night Isabella started itching like crazy and by Tuesday morning she was starting to rigor (shake). She did not run a fever but her blood pressure went up to 150/120. We took her here to the local emergency room where she received antibiotic and blood pressure medicine. She then started to vomit non stop and was also having bloody stool. The pediatrician's at our local er said that we needed to go to los angeles because they can not take care of such a complicated child. So, at 3:00 a.m. we took an ambulance ride to CHLA. She was still having severe vomiting that required zofran and fenagren (sp?). Her stools were very bloody and she still had a rash. They started meropenum and vancomycin. The rash would come and go and by thursday her vomiting stopped. The rash is better, but she still had slightly bloody stool. Her prograf level came back >30 so she had to skip 2 doses to lower her level. All of her blood cultures and stool cultures were negative. We don't know what happened....virus/bug/gvhd ?? Her labs are about back to normal. She does have a lower hgb because of the bloody stool. She did have one blast that showed up on her labs. The BMT doctors said that can happen when your bone marrow is very stressed. Lets pray that is the reason!!
Well anyway, We are home and I am happy to be sleeping in my own bed!! Bella is napping right now and William is playing with his daddy!!
Love,
Ledesma Family
Wednesday, February 25, 2004 5:25 PM CST
Isabella had her visit today at LA Childrens. We now are moving toward monthly visits!!! Yeah! Her creatinine maintains around 2.5, bun 60 and trying to keep her potassium and phosphorus in check. They are going to get Isabella on the kidney transplant list by May. She is also going to start growth hormone whenever the insurance company approves it....(very expensive drug). They want her to grow some before the transplant. I wish her kidneys would get better and we wouldn't have to put her body through this.
Bella and William are having a blast playing with their Grandma Chris and I am enjoying having my mom to talk to. William had a great 1st Birthday, and enjoyed his cake. I will post pictures. Hope all is going well and please pray for Bella's GVHD to go away and for her kidneys.
Love,
Ledesma Family
Wednesday, February 11, 2004 4:39 PM CST
Hi all!
**New pics in the album!**
Happy valentine's day! Here's a new pic of our cherubs! Bella had her BMT visit today. Her creatinine went up to 2.7 with a high potassium. We're waiting to hear from the kidney doctor to see if they want to change any medications. Otherwise we don't have to go back for 2 weeks. William will be turning 1 next week, and Bella says she doesn't want to grow up. I think she just wants people to do everything for her for the rest of her life!
We look forward to seeing all of our family at the birthday party. Bella will be excited to see grandma Chris. Hope everyone is well.
LeDesmas
Monday, January 26, 2004 1:23 PM CST
(That picture was taken exactly 2 years ago!!)
Isabella continues to do well. She does have skin GVH, but hopefully the creams will work. They are not going to go down on steroids for awhile now. Her dose is 5mg one day alternating with 1 mg the next. We now go to childrens every three weeks, can you believe that?? If anyone has any information on how they got rid of skin GVH let us know!!! Her kidneys are hanging out at a creatinine level of 2.4. They increased her epogen to 1500 units twice a week, this will increase her hgb and she will start to have more energy. Please continue to pray for Isabella so that she can get off these yucky medicines and be a normal little girl!!
Love,
Ledesma Family
(Anyone have information on Growth Hormone after transplant?)
Saturday, January 3, 2004 2:39 PM CST
Sorry for not updating sooner!
Isabella's follow-up lab looks pretty normal. The doctors will just watch and see and hopefully she will continue to do fine. Her counts this week are okay. Her creatinine is up to 2.3, platelet 300, hgb 8.8, wbc 8.9.
William and Isabella are keeping very busy. They like to wrestle eachother and usually I have to intervene. Friday Bella had so much energy. She was doing somersaults off the trampoline, went down the stairs all by herself, pretending to surf on her patio swing, and dancing around the house. After sweeping the kitchen I found out why. Isabella had picked her TTS3 clonodine patch off. This controls blood pressure but also makes her groggy and tired. So she was wired without it on. I am going to ask the nephrologist if maybe we can try titrating other medicines and get her off this patch so that she is more active. (burn off some of the steroid weight)
We were busy this winter with Auntie Cam from Denver. We went to Disneyland which was the first time Cam has ever been. Bella of course, is a pro now at Disney. She knows exactly what rides she wants to go on. Aunt Cam and Uncle Alan were here for Christmas Eve and enjoyed the kids very much. Christmas Day was very rainy but we received excellent news from Aunt Paula-Ann and Uncle Brian. They are expecting a baby in August!! Congratulations!!! New Year's Eve was nice, We had a little party.....just the kids, and fell asleep before 12:00. New Year's Day we spent in Santa Barbara letting the kids play at the park. Isabella and William loved the merry-go-round and then we went to eat at our favorite Italian restaurant, but it was closed. We ate at Left At Albequerque. Everyone was smiling at Bella due to Isabella dancing and grooving to the music.
Hopefully, the New Year Brings all of our families Peace, Happiness, and Ubove All GOOD HEALTH!!
Thank you for your thoughts and prayers!!!
Love,
Ledesma Family
Wednesday, December 24, 2003 9:00 AM CST
Today, Bella's labs came back worrisome.
Her WBC is 9.2
HGB 9.1
platelet 293
neutrophils 57
bands 5
lymphocytes 26
monocytes 8
eosinophils 1
metamyelocyte 1
myelocyte 1
promyelocyte 1
The metamyelocyte, myelocyte, and promyelocyte are imature cells that usually mature in the bone marrow. And for some reason her bone marrow is stressed and is kicking out these cells. I put in a call to LA children's and the doctor was suppose to get back with me and hasn't called. So I phoned our friend who is an oncologist at UCLA and he said that he would repeat the labs and have a specialist look at it under the microscope. If those cells are there, he would do a bone marrow aspirate. This is very scary. We have been so focused on her kidneys and now have to pray it is not cancer. Please pray that Bella's Bone marrow is just acting weird and that her cancer stays away!!
Worried in California,
Ledesma Family
Thursday, December 4, 2003 10:19 AM CST
Sorry for the delay in updating!!
Grandma Chris and Grandpa Alan were here for a week visiting. They had quite the adventure coming to California!! They drove here from NE and did fine until they got to Santa Clarita, CA where they were suppose to exit. They ended up staying on the 5 and went into Los Angeles. They did not know where they were so they exited the freeway to ask for directions. They knew they made a mistake when they saw that there were no street lights, homeless people everywhere, people selling coats for $5, and gang looking kids. They spotted a police officer on a motorcycle and asked for directions to the 101. They learned never exit a road in los angeles unless you know where it goes!!! We had a great time staying up late, playing games, and not to mention eating grandpa's good cooking!! It was nice, I didn't have to make a meal all week!! (My dad likes to cook!!) Thanksgiving was very nice. Grandma Diane made a wonderful meal and we got to share it with Uncle Bruce and Auntie Cheryl. Grandma Chris and grandpa Alan made it back to cold Nebraska and we miss them a lot!!
Isabella has been practicing riding her trike and William has been busy cruising, crawling, and now talking "lite" is his newest word. Isabella has to get her flu booster shot today and is not happy about it. She received the first half of the shot last month and complained for 3 days afterward. I think I might have some emla cream left over from her spinal taps that I may use on her thigh to see if it helps numb the area.
Her labs this week are:
bun 69
creatinine 2.1
wbc 9.9
hgb 8.5
platelet 277
She is now on 10 mg of steroid one day and 2 mg the next. That is a step in the right direction!! She still has the cushnoid features (puffy face and belly). Her swelling has been doing fine and hopefully the drs. can get her off all steroid without GVH flareup!!
Bella and William visited Santa yesterday and Bella told Santa that she wanted the unicorn/rainbow pajamas at the gymboree store!! I think Santa can manage that!!
That's all for now,
Love,
Ledesma Family
Thursday, October 30, 2003 3:13 PM CST
Happy Halloween!!
Isabella is going to be a fairy princess and/or Cinderella (can't make up her mind) and William is going to be a Baby Genius! The kids have been very busy. William has learned how to point at things and loves to turn on and off the light. He also has learned how to say Bella....Ba Ba Bala. He has started crawling and is now trying to get into everything. Isabella has been very moody lately. It must be from the taper of the steroid. Her dose is now 10/6. She is very short with all of us and very snippy with her brother. She is very sensitive to steroid changes. Her swelling is a little better, she can now put on her shoes. Creatine is higher due to the prograf.. 1.9 and her BUN has come down to 88. Her hair is coming back but I don't know if it is really her own hair or minoxidil fuzz. Please continue to pray for her swelling to go down and for her kidneys to get better.
Have a happy and safe Halloween!!
Love,
Ledesma Family
Friday, October 17, 2003 3:40 PM CDT
The doctors think that most of her puffiness is GVHD. We are now going to try the drug Prograf before starting Zenopax. Hopefully Prograf will work so that we will not need zenopax. Zenopax would make Isabella's immune system extremely low putting her at risk for fungal, bacterial, and viral infections. The doctors said that it would be a change of lifestyle for us, not that we had much of a lifestyle to begin with, but we would not be able to take her anywhere. The drug Prograf is kidney toxic so hopefully, her kidneys can tolerate it. Please pray that the Prograf works.
Sunday, October 12, 2003 8:19 PM CDT
Bella continues to hang in there. We are having a team meeting on Wednesday afternoon with her transplant doctors and the kidney doctors so that we can work out the issues with all of us there to decide if it is her poorly functioning kidneys or GVHD (Graft vs. Host) causing the swelling. If it is GVH they are considering trying Zenopax as the next immunosupressive agent. We will update after the meeting.
Thanks for checking in and please pray for Bella to get better, she deserves a break!!
Love,
Ledesma Family
Tuesday, October 7, 2003 1:11 PM CDT
Bella's labs for the week
BUN 77 (good compared to 121 last week)
creatinine 1.5
wbc 16.3 ( a little high)
platelet 340
neutrophils 62%
bands 1
lymphocytes 23
monocytes 10
eosinophils 1
basophils 3
Bella is a little puffy. Probably why her BUN looks better because she is retaining more fluid. We see nephrology and BMT tomorrow and hopefully we can continue her steroid taper. 10mg one day 8 mg the next day. I just wish she could be a normal little girl and not have all of these problems. Her behavior is much better and she is much more mellow. William can now say "Ma Ma" and knows the meaning. Steve says, "Hey, No Fair." But I say remember Bella said "da da" first!!
We are all doing well and please continue to pray for Isabella's kidneys and that her cancer stays away!!!
Love,
Ledesma Family
Monday, September 29, 2003 1:10 PM CDT
***NEW PICS IN ALBUM!!***
Hello Everyone,
Sorry for not updating sooner. We just got back from our first mini vacation in 2 years!! We went up north to San Francisco to visit Family. Isabella and William enjoyed playing with their cousins, Zach, Julia and Nathan. We went to Fairyland in Oakland which is like a storybook land of nursery rhymes with rides, magic shows and a bubble man. I think she enjoyed the rides the most because I had a hard time getting her to get off. We stayed with Auntie Paula-Ann and Uncle Brian in their new house. Isabella and William did very well on the car ride. By the 6th hour Bella was saying, "Mommy, this is hard to do." We are now home and both the kids are asleep, so this gives me time to update and finally UPDATE the Pictures!!!
Bella's labs are the same, and her medicines remain the same. Her immune studies are down to where they were when we moved out here because of the high dose steroid. They are going to try to wean her of the steroids to an every other day dose. Please pray for Bella and that she can get off of these medicines without her Graft vs. Host coming back. Thank you for visiting Bella's site!!
Please pray for a little girl named Alexys who was recently diagnosed w/ ALL. I went to high school with her mommy. Her site is caringbridge.org/al/alexyshourigan
Love,
Ledesma family
Wednesday, September 3, 2003 10:52 AM CDT
labs from Tuesday,
co2 19
bun 65
creatinine 1.7
alt 42
ast 27
wbc 9.8
hgb 12.4
platelet 332
Bella's labs look a little better. Her bun came down from the 116 last week. They reduced her lasix so she is not so dry, but now she is getting puffy again. The nephrologist says a little puffy is okay. Other than than we are all doing well. William can sit up and has just cut a bottom tooth. Bella has been working on getting herself dressed all by her self. We continue to practice jumping. One of these days she will master it!! That is all for now....Going to take the kids for a stroller ride.
Please say extra prayers for little Katia who has relapsed with AML. Bless you little Katia!!!
Love,
Ledesma Family
Saturday, August 16, 2003 8:05 PM CDT
Sorry for not updating sooner, but we have been extremely busy!! Bella's labs for the week,
Bun 104
potassium 4.9
creatinine 1.7
phosphorus 5.9
albumin 3.9
wbc 12
hgb 11
platelet 337
neutrophils 63
monocytes 16
eosinophils
.3
basophils .7
lymphocytes 18
Grandma and grandpa great were here from Colorado for a week, so we were busy showing them around California. We enjoyed them very much and hated seeing them go. Aunt Cam underwent major surgery and is recovering after 2 weeks in the hospital. Extra prayers to you, Auntie!! There is still a lot of work to do on the house! As all of you parents know, with little kids, it is hard to keep the house picked up. Isabella and William are doing well. William has been busy rolling over, trying to sit up, and learning tricks from his sister (crying to get his way!) I put him in the bouncy chair to do the dishes and he started to cry, so I turned and walked toward him and he started laughing, again I would turn a way...cry...walk toward him...laugh. He wanted his mommy!! Isabella is very fashion forward! She wants to change her clothes 100 times a day, and they have to be an exact match. When she wants to change her clothes she says, "Mommy, these pants are 38's, I think they are too small." She always makes up a different number each time. In fact, yesterday she said, "Mommy, I think my kidney's are too small for me....I need new ones." She still continues to have swelling issues. It is probably only a matter of time before she has to go on dialysis. Her BMT docs think sooner, but the kidney docs say not yet. Hopefully the cancer is gone, because her kidney's could not withstand any more treatment. It is exhausting to think about the fact that Bella will have to undergo a kidney transplant. We have worked so hard to beat this aweful cancer, and in turn, we are dealing with the consequences of the therapy. She deserves a break!! Her medicines remain the same except for an increase in Zaroxyln. The minoxidil has made her very hairy...more so than cyclosporine. So she is hairy, puffy, and has a steroid face and belly. I hope the doctors will try to get her off the steroids. She also had an MRI of her head thrusday to look for any sign of damage from radiation. (The biopsy of her kidney showed damage from the radiation) We continue to go to BMT once a week and now add Nephrology every other week.
Hope all is well,
Ceyonne, Steve, Isabella and William
Sunday, July 20, 2003 5:49 PM CDT
Steve and Ceyonne's computer in down, so this is Grammy Chris updating.
After going home from the hosoital July 4th, Isabella was readmitted on the 5th due to Roto Virus and returned home on the 9th...Just in time to pick Grammy up at the airport. While I was in California, Bella had several Dr's appointments. We found out her kidney damage was caused from the radiation (TBI)she received before transplant. Bella also had increased edema so the Dr's put her on lasix along with zaroxolyn. The edema has gone down and she is feeling better.
Yes we did paint a BEAUTIFUL PINK PRINCESS ROOM!!! She loved it...all that came out of fer mouth was "WOW...WOW...WOW" and GREAT BIG SMILES. I think William was a little worried when he saw all the PINK. We also painted our nails, read books, made up stories about rainbows and lost Grammy's (Ceyonne had me drive in California...We live in a town with 900 population. William and I hung out together during the night so Momma and Papa could catch up on sleep, this brought back memories, up every couple hours but it's worth every minute.
Great Grandma and Grandpa will be coming up the first of Augest, then Auntie Cam will be up in September. Auntie Rachel will try to make it somewhere in between.
BUN 95
Creatin 2.5
Steve, Ceyonne, Isabella, and William send their Love to all. PLEASE continue your prayers for Bella and ALL the CHILDREN.
BIG HUGS!!!
Grammy Chris
Friday, July 4, 2003 9:15 PM CDT
Happy 4th of July!!!
INDEPENDENCE DAY, for us!! We have been finally discharged from the hospital. We were admitted two weeks ago to Children's Los Angeles for Bella's renal failure. It caused her to swell up because her body couldn't get rid of the water because her kidney's are not doing so well. Her creatinine is around 2.5 and bun of 80. They stopped her iv fluids and put her on a fluid restriction of 600ml per day to get rid of the extra fluid. They also had to control her b/p by adding some new medicines. She now looks like her normal self (-the steroid factor) Here are her meds,
nystatin
sodium citrate
multivitamin
cephalexin
epoetin
bactrim
monoxydil 5mg bid
enalapril 1.25 bid
furosemide 15 mg bid
predinsone 5 mg bid
zantac 30 mg
rapaimmune .6ml
clonidine tts2
Hopefully her GVH will go away and then she can come off the steroids. Once she is off the steroids, the other medicines will follow.
We met a lot of great families and a lot of great nurses. We still miss Denver Children's though!!
Please keep Bella in your prayers!!
Love,
Ledesma Family
0
Wednesday, June 18, 2003 6:16 PM CDT
Happy 3rd Birthday, Isabella!!! Mommy, Daddy and William love you so much!!!
Sorry for not updating, but boy have we been busy!! In the process of moving, Bella's GVH decided to show itself. It started out with her being cranky and tired and then it came in the form of a raging rash that looked like a sunburn and then started to blister and peel. The doctors immediately put her on 10mg of steroid per day. Not so fun for Bella. This has created her "evil twin." She can be so sweet one minute then.....WATCH OUT, Don't touch me, Don't look at me, Don't Do Anything...she says. It has also made her blood pressure rise to 140/100. They increased her norvasc to 5 mg twice a day. She is also seing a nephrologist now to help with b/p and kidney issues. Hopefully, her kidney's will recover and not require any treatment. If you think we couldn't squeeze anything more into a week...William had his christening on the 15th. He is growing so much everyday!!
Well, I have to get back to unpacking boxes..etc...!!!
Love,
Ledesma Family
Monday, June 2, 2003 6:59 PM CDT
Labs for today:
potassium 5.9 (H)
chloride 113 (H)
CO2 15 (L)
magnesium 2.1
BUN 46
creatinine 2.2
AST 24
ALT 18
WBC 8.5
HGB 10
platelet 446 (H)
neutrophils 54
lymphocytes 32
monocytes 12
eosinophils .5
basophils .8
Not much change in labs. We would like the creatinine and bun to come down. The potassium is high because she is on a medicine called enalapril. I don't know if they will take her off of it again because it is starting to creep up. Her platelets are high, but I don't know what that means. She is on 4 medicines for blood pressure. Enalapril, Norvasc, TTS3 Clonodine patch, and labetalol. Hopefully, her blood pressure will get better once they can wean her off her steroids (4mg every other day). One year after transplant and we are on more meds then when we came home from the hospital!! We are just happy that Bella is still with us and that we have made it this far!!
We are preparing for our move this weekend and will close escrow on thursday. We are now poor, all of our money went into this house!! We are very excited to have our own place....finally!! Bella is excited for her PINK room decorated in "Fairy Princess." She loves to dress up and loves to play with anything sparkly, or that has to do with ballerinas. We hope that she can start a Ballet class in the fall. (depending on her immune system) Bella's birthday is coming up on the 18th. I special ordered her a pink "Gift" cake with a dark pink ribbon. It better be yummy ($80). As for little Liam, His christening is on the 15th, father's day. We are having a hard time finding a christening outfit that fits him. He is a wopping 16 lbs at only 3 months!!
Thats it for now!
Love,
Ledesma Family
Friday, May 23, 2003 0:35 AM CDT
It is 10:55 our time...It is still 5/22!! Happy BMT-1year, Bella. Mommy and Daddy are so proud of you. You are a very strong little girl and we love you very much. Thank you to Bella's cord blood donor, doctors, nurses, friends and family who have been by our side through all of this. We continue to need all of your support!!
Bella went to clinic on wednesday and also had her growth hormone study done. We won't get the results back for another two weeks. Bella continues to have blood pressure issues. In fact, we just phoned the doctor an hour ago because it is still 138/100. She is on the clonodine tts3 patch, norvasc 2.5mg twice daily, and labatelol 75 mg daily. The doctor said that after adding more labatelol, if it is still high tomorrow morning we have to go back to Los Angeles. I don't know what they will do. Her labs this week are:
reticulocyte 3.3
glucose 298 (drawn during breakfast!)
sodium 138
potassium 4.6
co2 22
magnesium 2.0
bun 44
creatinine 1.8
ast 30
alt 19
wbc 11.2
hgb 10.2
platelet 297
neutrophils 57.7
lymphocytes 25.8
monocytes 10.3
eosinopils 5.5
basophils .7
Please keep Bella high on your prayer list. Her kidney's need some help!
Love,
Ledesma Family
Wednesday, May 14, 2003 11:04 PM CDT
Last weeks labs:
potassium 6.0
co2 18
magnesium 2.1
bun 36
creatinine 2.2
ast 26
alt 18
wbc 12
hgb 9.4
platelet 376
neutrophils 57
lymph 23
mono 11
eosinophils 7
basophils 2
This weeks labs:
retic ct 3.4
potassium 4.9
co2 18
mag 2.1
bun 44
creatinine 1.5
ast 25
alt 16
wbc 12.6
hgb 10
platelet 312
netrophils 59
bands 7
lymph 18
monos 14
eosiniphils 2
Bella had her visit to Children's today. They did her 1 year neuro exam. She did very well. She completed all of the tasks and answered all of the questions correctly. They even had to pull out harder material for her to master! Her clinic visit went fine. She is to continue 400 cc of fluid at night and 4mg of steriod every other day. We will continue to visit children's weekly. Next week she will have her growth hormone study done in addition to her regular check up.
Bella has mastered the potty!! We are on day 5 without diapers (during the day). She is very excited about it. In the morning when she wakes up she says, "Hurry Mommy, get me panties...these diapers are not comfy!!." Good job, Bella!!!
Our last walk through for our house will be on tuesday. We are so excited to move. We just hope that Bella will have an easy transition. (moving from Denver to CA, was very tough...hopefully accross town will be okay) We plan on moving the first weekend in June. Yeah!!
Thank you everyone for checking in on Bella. Please continue to pray for her kidneys and keep all of the children high on your prayer list!!!
Love,
Steve, Ceyonne, Bella and Liam
Thursday, May 1, 2003 8:12 PM CDT
We will continue to go to clinic every wednesday (long drive to Los Angeles!) Grandpa Ray babysat William this time and did very well. Bella enjoyed having her mommy all to herself. They decreased her predinsone to 4 mg and will wait to see what her rapamune levels say. Her labs were...
sodium 143
potassium 5.3
co2 17
magnesium 2.3
bun 51 (high)
creatinine 2.3 (high)
WBC 14.9 (a little high)
HGB 8.8 (on its way up...Procrit is working)
We do a walk through in our house tomorrow with the contractor. We soon will be in our house!!! We will post new pictures soon of the kids and the house!
Love,
Ledesma Family
Wednesday, April 23, 2003 7:19 PM CDT
Labs from Monday,
sodium 135 potassium 5.3
chloride 118
co2 19
magnesium 2.1
BUN 43
creatinine 2.0
wbc 13.9
hgb 8.4
platelet 336 (new record!)
neutrophils 49
bands 3
lymphs 28
monos 14
eos 6
Not much change in labs so they had us come into clinic this morning to take a look at her. Since they stopped cyclosporine, they want her to have Rapamune. Unfortunately, this is "skunkier" than cyclosporine! Poor Bella : ( They also increased her predisone to 5mg every other day and increased her fluids to 300cc at night. They then will determine next wednesday if they want to come down on the steroids. (Poor Steve, Bella and Mommy....STEROIDS= yucky tantrum days) They added analapril B/P medicine to protect the kidneys. Please continue to Pray for Bella's kidney's to recover and keep all the kids high on your prayer list. Thank you to the Shipley's and Cohens for the kidney information!! We miss you guys!
Please say extra prayers for my brother-in-law, Scott, who was shipped overseas yesterday. Also my cousin Tami needs extra prayers for her baby who will have to be delivered early!!
Love,
Ledesma Family
Friday, April 18, 2003 7:26 PM CDT
Bella started Epogen (sp?) today to increase her HGB and hopefully start making her own RBC. She will take it Monday, Wednesday, and Friday. They did her labs this morning and they were not good. Her creatinine is up to 2.3 and her BUN up to 43 and potassium 5.5. They are holding off her cyclosporine until monday to see if her counts improve. They think the kidneys are retaining the cyclosporine even though it is such a small dose. Hopefully she doesn't have any GVHD. Please pray for Bella's kidney's to recover.
Love,
Ledesma Family
Tuesday, April 15, 2003 1:22 AM CDT
labs for today
potassium 5.3
sodium 142
chloride 114
co2 20
magnesium 2.0
bun 41
creatinine 1.9
wbc 10.8
hgb 8.3
platelet 273
neutrophils 47
bands 4
lymphocytes 45
monocytes 3
eosinophils 1
Well, her creatinine went back up :( We will have to see what the doctors say on Wednesday. (nurse draws labs at home) She received her monthly dose of IVIG at home and we have to call tomorrow to see if they want to give her Red blood cells. Other than that, Bella is her normal vivacious self. She loves playing with her brother but sometimes is too rough. I love watching them interact. Our house is almost complete. They have to put the wood floors in and do some finishing touches and then we can finally move in!! Other than that, no news!
Thank you for following Bella's progress and please pray for all these children fighting for their lives!!
Love,
Steve, Ceyonne, Isabella and William
Wednesday, April 2, 2003 7:17 PM CST
Bella's appointment went well. Her labs are,
WBC 12
HGB 9.1
plts 290!!
45 segs
3 bands
142 sodium
5.3 potassium
bun 35
creatinine 1.5
mag 2.4
It is good to see the creatinine coming down and hopefully with the decrease in her cyclosporine it will recover and return to normal. Her cyclosporine is now at 2mg bid and prednisone 2mg every other day. The doctors are going to continue to taper her cyclosporine with hope that can get off without GVHD!
Bella has been very busy with her brother. She likes to give him baths, help change his diaper and dress him. Her new game is to find birds outside or on TV and look them up in her Bird Book to see what they are called. She misses her grandparents very much. Every time she sees an airplane go by she says, "Bye Grammy and Grammpy!!"
Congratulations to Uncle Bruce and Aunt Cheryl!! Nathan Edward Ledesma is here 1:07 p.m., 8lbs. 20 1/2 inches!!
Love,
Ledesma Family
Wednesday, March 12, 2003 10:17 PM CST
Bella is having a ball with her grandparents and keeping them very busy. Steve and I finally went out for dinner alone and enjoyed every minute of it. William is taking after his sister and has started to reject the bottle. Hopefully, if we keep trying he will learn to take it so that we can get out once and a while!!
Bella has her next appointment on 4/2 and hopefully they will reduce more of her medications. Her GFR came back at 25. Normal kidney function is at 100. The doctors are hoping once they get her off cyclosporine that she will start to recover! So far, her GVH is very minimal. She has small little bumps that are hardly visible. Other than that, we are doing great!
Love,
Ledesma Family
Wednesday, February 26, 2003 0:17 AM CST
**New Pics***
William and Bella are doing well. Bella had her appointment at LA Children's wednesday. They are going to do more kidney functioning tests (GFR..etc) to see why her kidneys are not doing so well. Her creatinine is up to 1.9 and Blood Pressure in the 180's. She had to get niphedipine sp? in clinic for her B/P and they put her on a high dose patch to keep her blood pressure down. I have to take her in to the peds office every day for blood pressure check. She also needs another blood transfusion within the next couple of days (whenever the HMO approves it) The doctors think that the reason everything (her counts) are so wacky is due to her kidneys not working. The kidney produces a hormone that tells the bone marrow to make RBC, and they think that since her kidneys are not functioning very well it is not telling the bone marrow to make cells. So with all of this, we now have to go to Children's every other week. Hopefully, they will get it all figured out so that Bella will feel better and her counts will be back to normal!!
Love,
Ledesma Family
Thursday, February 13, 2003 8:25 PM CST
Bella is recovering from her cold and finally is more alert and playful. The cold made her very tired and she slept most of the day for about 3 days. This was actually not bad for me considering I could get all of laundry ironed (finally) and things ready for the baby. (If you do not know Bella well, she requires a lot of attention and it is hard to get the above done!) Steve took Bella's blood to his clinic and had them run a CBC on it to make sure her counts were not too low. (because she was sleeping a lot) Her hgb is still maintaining the 8.2 range but her platelets are falling again, 80. Hopefully, this virus she has doesn't damage the bone marrow again and require transfusions. The medicines she takes now are:
cyclosporine .6ml
predisone 1mg every other day
acyclovir 5ml 2xday
cephlex M-F 2xday
bactrim Saturday and Sunday 2xday
bicitra 3 times day
norvasc 2.5 ml 1 day
leucavorin (help protect blood cells)Sat and Sun 2xday
nystatin 2xday
zantac 1x day
steroid cream topically 2xday
500ml fluid @ night with added potassium acetate and bicarb
So, for all of you parents who have healthy kids and complain about giving tylenol or the occasional antibiotic, please think of these bone marrow transplant kids, and Bella's list is mild!!!
We are still waiting for the baby. The doctor said he would rather see me go into labor on my own, then be induced. So Baby William will get to pick his own birthday!!! Aunt Cam comes Saturday, so Bella is already getting her play dough out and her "shoes" ready for Auntie to play. Hopefully, the next time I update, It will be announcing baby William's birth!!
Please say extra prayers for Jake Cohen and his family.
Love,
Steve, Ceyonne and Isabella
Wednesday, February 5, 2003 6:42 PM CST
Thank you so much for your thoughts and prayers for Bella. Her final tests came back 100% donor!! Her bone marrow needs to recover from the virus. Her platelets are finally coming up but her HGB is still slacking. Her labs from yesterday were:
WBC 10.2
HGB 8.5
platelet 154
neutrophils 62%
bands 2
lymphocytes 20
monocytes 13
eosinophils 1
potassium 5.3
co2 17
creatinine 1.5
Her creatinine has been high and might warrant a GFR kideny test here in a month or so. The cyclosporine is probably to blame for the increase. Her potassium is also high so they are decreasing the amt. in her fluids and she is suppose to stay away from high potassium foods. Her visit went well, she saw Dr. Kapoor. She put her on some extra creams for her skin rash (GVHD) and hopefully it will clear it up. GVHD can become active when a virus is in the system. Unfortunately, it looks like she has caught another cold. Hopefully, it will not make her bone marrow go crazy again. We try very hard to minimize her exposure to people so that we don't have this problem, but lately many people have been over at the house.
As for me and the baby, The doctors are going to check my cervix on the 2/11 and if it is "favorable" will induce on the 12th. (if the baby doesn't come before then!) Steve has been busy working hard and playing hard. Aunt Cam will be out on the 15th to help us with Bella and the baby so that will be very nice.
Thank you for taking time to visit Bella's Page and please say a prayer for her and all the kids fighting illnesses. Please keep Jacob Cohen high on your prayer list!!!!
Love,
Ledesma Family
Monday, February 3, 2003 7:20 PM CST
Please say extra prayers for little Jacob Cohen. He is fighting an infection in the ICU. It is very scary how one day your child can be just fine and the next you are rushing them to the hospital for something unknown. Hopefully, the antibiotics will due their job and little Jake will be home soon.
Bella had her labs drawn and her results won't be ready until tomorrow. (HMO :( take a long time) Otherwise, we have her appt. on Wed and maybe then we will get her donor results!!!!
Love,
Steve, Ceyonne and Isabella
Tuesday, January 28, 2003 at 06:06 PM (CST)
**new pictures***
No news, Yet. I called L.A. children's this morning and the nurse said that she hasn't heard anything yet about her chromosomal tests. Hopefully, when they call they will say 100% donor!!!
Bella has been busy watching "The Neverending Story." It truely is the neverending story because she wants to watch it over and over again!!! As for me, I am getting extremely uncomfortable with these last few weeks of pregnancy! I am ready for him to be here!
We hope to have more informations soon!!
Love,
Steve, Ceyonne and Bella
Tuesday, January 21, 2003 at 10:52 AM (CST)
Good News! Bella's preliminary results came back looking good. The more detailed results should be back within 3 days or so. The doctor said that she would have expected to see blasts in her marrow sample if her cancer was coming back because of the fast drop in her counts. Hopefully, her next report will be good as well. This is such a relief. We were very worried and so were the doctors. She is still requiring red blood and platelet transfusions. If this continues, the doctors have to figure out what has caused her blood to act this way.
Bella has been busy watching Ice Age. (Her new favorite movie). We have to go to her regular peds doctor today and have her blood pressure checked. Her pressures have been high. Then tomorrow I have my appt, and Friday, another blood pressure check for Bella. We will be busy running from clinic to clinic. Bella will have her next blood draw on Monday to see if she needs more blood. Her follow-up appt will be on the 5th of Feb. Auntie Cam will be coming out Feb 15, 16, and 17th. This should make Bella happy!!!
We will update with any new information.
Love, Steve, Ceyonne and Isabella
Thursday, January 16, 2003 at 10:20 PM (CST)
***New Pictures from Disneyland***
Friday, Bella had her labs drawn and her labs were:
wbc 9.65
rbc 2.63
hgb 8.0
platelet 73
nuetraphil 65.1
lymph 18.4
mono 13.1
eos 3.4
sodium 140
potassium 4.7
chloride 114
co2 19
bun 56
creatinine .9
clucose 110
LD 1188
uric acid 6.9
cyclosporine 128
As you can see her hgb and platelets have fallen even more. (not a good sign) She received packed red blood cells and extra fluid because of her bun level. The doctors say they are worried but will not say one way or the other about her cancer until Monday's biopsy. We should know a few hours after the biopsy what is happening in her bone marrow. There are only a few other things that can make her bone marrow do this which are, GVH (graft versus host), daily bactrim (which she is only on 3 times per week), a certain kind of virus, and the one we dread ..AML) Please, let it be anything but CANCER.
We are taking Bella to Disneyland tomorrow. She really wants to meet Princess Belle, Cinderella and Sleeping Beauty. (of course, Belle is her favorite!) If we have to be admitted again to the hospital, We may not be out for a very long time. We are bringing the digital camara and will post NEW pictures for everyone to see.
Thank you everyone for all of your prayers and support. We need all we can get!
Love, Steve, Ceyonne and Isabella
Monday, January 13, 2003 at 11:08 PM (CST)
Please pray for Isabella's next lab results to be 100% donor. This morning we noticed that she was looking pale so I dropped her blood off at Steve's office and they ran a CBC. Her hgb has dropped to 8.8 and platelets to 115. Her creatinine has gone up quite a bit to 1.2. We called LA children's and they want to see her wednesday morning. (not open on tuesday) They are going to to engrafment studies and probably red blood transfusion. We won't get the results back until Friday or Monday. This is really scary and upsetting for Steve and I. We hope her cancer is not back. Please say extra prayers and send good thoughts our way.
Love,
Ledesma Family
Thursday, January 09, 2003 at 02:38 PM (CST)
Day +232
Bella had clinic yesterday and everything is about the same. 1 mg of steroid a day and norvasc for blood pressure are her only changes. Her platelet and hgb dropped a bit. The doctors think it can be attributed to her cold. Everyone in our house has a cold except for grandpa Ray and myself. We still have not seen the psych people yet, but are wishing they would call soon. We hope to get a plan before the new baby comes. Bella enjoyed taking a tour of the hospital/delivery rooms on Monday. She saw the nursery where there was a brand new baby. She was very excited. Grandma and Grandpa Ullrich finally bought their airline tickets for March. Bella is going to be very excited to see everyone again!! Although, she misses her aunt Rachel and aunt Cam too!! Hopefully, her Bella's immune system recovers soon so that we can fly and see everyone!!!
That's all for now!!
Ledesma Family
Monday, December 30, 2002 at 07:55 PM (CST)
Bella continues to do well. She unfortuately, has 3 big tantrums a day that last about an hour each. She hits, bites, and screams. L.A. Childrens has referred us to the psych dept so that we can learn what we need to do as parents for her and what we can do to help her calm down!! Personally, I think it is all the medicines she is on. It is hard enough being a two year old, let alone a two year old on 10 medications!!!
Bella enjoyed her Christmas. Her cousin Zach was here to play with. Thank you everyone for all of the wonderful gifts!!! She is going to be disappointed when we take down the christmas tree, but hopefully we can get her interested in valentines day(and arrival of her brother!!)
As for Steve and I, we are preparing for William. We hope to get out a bit before the baby comes!! The doctors say he will probably weigh around 6lbs. so he will be a little guy. Bella weighed in at 6.11, but remained in the 95th percentile for height and weight until she was diagnosed with cancer. We will be sure to post new pics of Bella and William!!!
We hope to have a healthy 2003!!!
Happy New Year!
Ledesma Family
Saturday, December 21, 2002 at 03:00 PM (CST)
Merry Christmas to everyone, and a Happy, Healthy, 2003!!
We didn't have much luck getting off steroids. Bella developed a GVHD rash, vomiting and lastly...poops!! We are back on them at 1mg every day. Of course, that doesn't make her feel as happy as she could. We deal with major tantrums. It is hard to tell if they are 2 year old tantrums or from the steroids. I guess only time will tell.
Grandma Chris had a great time out in California. Bella was sad to see her go, but looks forward to everyone out when William comes! Bella points to the calendar and says, "In March, Grammy and Grampie come!" She also wants Grammy to bring Uncle Al and Auntie, Aunt Rachel, Grandma Clara, and Great-Grandma. I guess you'll have to work on that, Grandma!!! We enjoyed showing Grammy the sights of California. Unfortunately, Bella wasn't very happy to be back on steroids and threw many tantrums.
This year we are spending Christmas here at Ray and Diane's. Bella's cousin Zachary will be here to help Bella drive grandma Diane crazy. Bruce and Cheryl will be good company for Steve and I considering we don't get out very often. (Bella still cannot go to public places unless she wears her mask, and then have to avoid ill people) Bella sat on Santa's lap this year and told him that she wants a cotton candy maker, baby stroller, and a ball (hoberman sphere) I was very surprised she sat on his lap, let alone, talk to him!!! (You all know How Isabella is!)
Hope all is well with all of our BMT friends in Denver, and please pray for all of the kids!!!!
Steve, Ceyonne and Isabella
Thursday, December 05, 2002 at 05:45 PM (CST)
Isabella spent yesterday at Children's LA. She received her IVIG and her regular check up. Everything looks good. They discontinued her steroids and hopefully she will no longer be so moody! The Dr's decided to keep her on fluids through December so that we do not have any problems over the holiday. Grandma Chris is coming from Nebraska this monday! Boy, is Bella going to be happy! (not to mention Steve and I will be happy, we might be able to go out to dinner alone!) Isabella's cousin Jacob turned one yesterday, Happy Birthday Jacob!. We are still debating between cord blood registries right now for William. The Cord Blood Regisity or Oakland Research are the two we are considering. We just hope William is a match. (hopefully, we will never need it!!!!!!!!!!)
Prayers to all the families!
Ledesma Family
Monday, November 25, 2002 at 07:49 PM (CST)
Hello Everyone,
Bella has been busy getting ready for thanksgiving. She is very excited to see her cousins, Zach and Julia, on wednesday! We have already begun the Xmas season by getting an early start on shopping. Today, Bella noticed a boy at the mall who had brown hair and black glasses. She said, "Mommy, Look! It's Harry Potter!!" I thought it was very funny!! Bella still misses Denver. She misses all of my family visiting. When she is upset with me, she runs down the list of family she wants to hold...Grammy Chris, Grampie Alan, Auntie, Uncle Alan, Rachel, Jake, Grandma Clara, Grandpa Clayton....and even her great-great grandma Dick! She insists that you all are coming and that we go to the door and wait for you. I told her that grandma Chris is coming but not until later. I said that she will come in an airplane to see you and Bella said, "No, grandma drives her big red truck!." So anyone from my family, Please come soon to visit!!
Medically, Bella continues to do good. She is on cyclosporine twice a day 50mg, nystatin, acyclovir, bactrim, magnesium, zantac, predisolone 2 mg every other day, iv fluids at night, and bicitra for her kidneys. She still fights her steriod cream to her skin. (little bit of GVH) The doctors still plan on getting her off fluids in December and then her central line out in January. Her next appointment is Dec 4. Please pray for Bella's recovery and that she will remain a healthy little girl!!
Happy Thanksgiving!! We have so much this year to be thankful for. Thank you for all of the prayers and support, Bella's cord blood donor who ever you are, and for our wonderfuld Isabella!!!
Love,
Steve, Ceyonne and Isabella
Wednesday, November 20, 2002 at 05:42 PM (CST)
+182
Bella is doing good. She had a rough start with this last chemo. She had trouble walking and nerve pain in her feet. It is slowly getting better, but she sometimes says her feet hurt. We went to L.A. this morning to make sure nothing else is going on. Dr. Shah thinks the pain is related to the chemo and that it should get better with time. Her next appt is dec 4. She has extreme mood swings from the steriods w/ her spinal tap. They gave her a double dose of steriod (by accident) and you can definitely tell her behavior has changed. She is on an emotional rollercoaster!! We hope the steriod will be out of her system soon!!
As for the new baby, everything is going well. We got a video of the last ultrasound. It should make for a great keepsake for William!!! We are getting very excited for him to come.
Other than that, no news is good news!
Ledesma Family
Friday, November 01, 2002 at 11:27 PM (CST)
Labs for today
WBC 11
Hgb 11.8
platelet 246
neutrophils 64
bands 1
Bella received IVIG in clinic this morning. She did very well. She enjoyed teletubbies and mcdonald's (of course!). The doctors here in L.A. say that she needs to be on cyclosporine for another 6 months. They say that unrelated cord blood patients usually require it for one year. They also said that they will take her central line out in January! This means that Bella will now have to be poked for her blood draws!! Poor, Bella. She is almost off her steroid and still requires IV fluids at night. She has her last spinal tap w/ chemo on the 13th. The doctors here will not do another spinal or biopsy unless they are worried about her counts.
Wednesday, October 23, 2002 at 10:35 PM (CDT)
Hello! Day +124
Isabella's labs:
WBC 12.7
platelet 278!!
lymph 22
mono 12
eosinophils 5
baso 1
bands 8
Good news! Bella's cytospin results are clean and she also had engraftment studies done. The engraftment studies showed 100% male cells. Yeah, for Bella! (as Bella would say) Bella is finally getting used to California. She is actuallly playing with grandma Diane right now!! (a first in two weeks!) It just takes time!!
Bella enjoyed the weekend with her cousins Zach and Julia! Julia celebrated her 1st birthday. She is growing so big!!
We finally bought a house!! The only downfall is that it will not be ready until May! They are starting construction on it within the week. It is 5 bedrooms + office. I told Steve, "We are going to have all of these bedrooms and the kids are still going to be in our room!" That just means we have a lot room for company!! Our house will be empty because we can't afford to furnish it!!! That is okay, as long as everyone likes to eat Japenese style! The backyard is very small, but most backyards in California are. We hope to have everyone over once we are settled in!
Thank you for all of your prayers and support!
Love, Ledesma Family
Thursday, October 10, 2002 at 06:07 PM (CDT)
Bella had her first spinal tap in Los Angeles. The doctors called and said there were 4 white cells which were lymphocytes and the results of the cytospin are still pending. Hopefully, all will be fine. Bella really misses home. Last night she cried all night wanting to go back home. "Please, Mommy, go back home. Want to go in the car mommy. Bella and mommy go back home!! I Want to go HOME! I felt so bad, but hopefully she will soon adjust. I think we will take her to Chucky Cheese tonight!
Thank you Grammy Chris for the Halloween gift box. Bella and Daddy love the treats. (Baby William too!) Steve continues to work hard and is now studying for the Nephrology Boards. Like we do not have enough to worry about. I wanted to tell all of my Denver friends that I miss you all and can't wait to see you. Don't hesitate to call!!!
Hope all is well with you and your families!!
Steve, Ceyonne, Isabella and Baby Liam
Friday, October 04, 2002 at 10:11 PM (CDT)
We made it!! Yeah! We are finally in California. Our trip went very smooth which can be attributed to Uncle Ed and Aunt Eunice for donating their company airplane. Bella enjoyed the first part of her flight, "Go Mr. Airplane Man!" Then she fell asleep but when she awoke she was air sick. "No more airplanes for Bella!" she would say. The rest of our stuff including our car arrived here on Wednesday. We have been looking for houses hoping to find the right one. Grandma Diane will babysit Bella tomorrow while we continue our search.
Isabella had her first appointment at LA children's this morning. I must say, I already miss Denver Children's!!! Everything is so different. I think I like Denver better!!! Hopefully, we won't be spending much time at the hospital. Instead of a 5 minute drive to Denver children's, I have a 2 hour drive to LA Childrens! YUK!!!
Labs:
WBC 12.6
HGB 10.1
platelet 134
lytes: good
unfortunately, she has 4 mylocytes and 2 promylocytes. Hopefully, it is nothing but if she continues to produce these immature cells they will do a bone marrow biopsy to check to see if there is cancer. This is worrysome for us. Any little change in counts, as all of you parents know, makes you worried. She still has residual GVH skin rash. The doctors here want her to start again the steriod creams. She will have her next spinal intrathecal chemo on wednesday. Please pray that all is good!!!
We found out that we are having a Boy!! Yes, Uncle Brian, you are correct again! Uncle Brian has been accurate at guessing all of the nieces and nephews. We also found out the Uncle Bruce and Aunt Cheryl are expecting a baby in April. The Ledesma family is keeping very busy!! Steve is very excited for a son. All we want is healthy baby!! We will be storing the cord blood for Bella. Hopefully, she will never need it.
Hope all is well!
Love,
Ledesma Family
Monday, September 09, 2002 at 05:38 PM (CDT)
Day +110
wbc 8.7
hgb 9.3
platelet 110 yeah!
segs 68
bands 5
lymphs 5
monos 20
cre-s .7
lytes- good
Bella had a good day at clinic. Of course, it is always good when you bring cheeseburger and fries!!! (Bella's favorite!) Her rash is gone and is probably attributed to the acyclovir. She continues to have vomiting on her steriod/ low dose cyclosporine days. They are switching her to oral steroid and will continue her cyclosporine taper. If she continues to vomit they will scope her gut in two weeks. Bella will undergo propofol on wednesday for her spinal tap so we need extra prayers for clean results!!! She will finally be done with intrathecal chemo in November....Yeah for Bella!!!
Bella is looking forward to moving to California. Steve will be back home in two weeks to make sure everything goes smoothly. Bella continues to amaze us everyday. She is now learning the map of the U.S. She has most of the western states memorized and is working on the east coast. She is so interested in learning!!! She is very focused and we are taking advantage of this while we can!!! Aunt Cam came over this weekend and we all went to the outlet stores. Bella is quite the shopper. She loves to shop!!! She says, "I like this one....This one's cute....Do you love this one?" We dropped Cam back off at her house and she asked if we wanted any fresh vegtables from the garden to take home and Bella replied, "No thank you, I'm full. Mommy can we get a cheeseburger?"
Bella sends her kisses. Please pray for her results wed. to be clean and also for all children battling cancer!!!
Thursday, September 05, 2002 at 05:39 PM (CDT)
Day +106
WBC 5.7
HGB 9.4
platelet 95
ANC 3192
Bella is doing well. Her rash still comes and goes. They took her off Acyclovir to see if she is allergic to that. She continues to dance and play every day. Her hair is finally coming in. It is a little bit darker than her original head of hair. We can't tell if it is going to be curly. I had my 4 month appt. today and everything looks good with the baby. It is always wonderful to hear the little heart beat. We will get the ultrasound done the end of this month. I think we are going to keep the gender a surprise!!
Please keep Bella in your prayers. Also, Please send special prayers out to Bella's friend Hannah Randall. Her cancer is coming back and her little body can't handle another transplant. We are praying for you, Hannah!!!!
Monday, September 02, 2002 at 09:17 PM (CDT)
Day +103
Bella had a wonderful time with her dad!! They played together and shared many kisses and hugs! We went to the history museum and went to all of Bella's favorite exhibits.
She unfortunately, is allergic to something unknown. She has a horrible rash that comes and goes. Hopefully, Dr. Giller will know what may be causing it when we see him tommorrow. Isabella no longer needs amphotericin nose spray and is on a cyclosporine taper of 70/35 70/0. She continues steriods at 6mg every other day.
It won't be long and we will be moving to California! Uncle Ed and Aunt Eunice are wonderful people!! They are flying us out on their company's plane. This makes is easier for Bella to travel! We don't have to worry about being in a commercial airplane surrounded by germs or driving in the middle of Utah and have an emergency. Thank you so much Uncle Ed and Aunt Eunice!!!
Bella sends her kisses!!!
Please pray for Bella and all of these Brave kids!!!!
Wednesday, August 28, 2002 at 03:04 PM (CDT)
Day +98
Sorry for not updating sooner but we have great news!!
Bella's bone marrow is 100% Male donor cells!! Her spinal fluid had three white cells that are also male donor cells. She has 0% 11q23 abnormality (her cancer). We are so excited. Dr. Giller said that her biggest tests will be at 6 and 9 months post transplant. That is when she would be at highest risk for relapse. All we can do is pray and hope that Bella remains cancer free!!
Steve is coming back home again this Thursday. Bella has really missed her dad. We will be joining him in California on the 28th of September. Finally!!!
Thank you for all of your prayers and support!!
Love, Ledesma Family
Tuesday, August 13, 2002 at 04:27 PM (CDT)
Day +83
Bella's counts:
WBC 8.1
HGB 9.1
platelet 37
segs 68.2
lymphs 7.3
cre-s .6
ggt 12
gpt/alt-s 54
Everything looks good! Bella has her big tests tomorrow so please keep her high on your prayer list. She will probably feel yucky for a day or two with vomiting and headaches. (chemo in the spinal fluid) Bella finally will start her cyclosporine taper and by the time we move to California she will be on cyclosporine every other day! Yeah!!! If you don't know, cyclosporine is a nasty tasting medicine. Bella says it tastes like SKUNK! Once she is off her cyclosporine they will wean her off the rest of her meds! We have decided that she will be going to LA Children's. I hope she likes the clinic as much as she likes it here in Denver.
We should get Bella's final tests results next week.
Friday, August 09, 2002 at 04:49 PM (CDT)
Day +79
We can finally update our page!! Bella was admitted to the hospital on the 1st. She started having chills and on our way to the hospital she started to spike a fever. She grew out a gram-negative and a gram positive bug in her blood. (citrobacter, enterobacter) These were likely caused from a leak in her bowels to her bloodstream. We are finally home and boy are we happy. The only hard part about being home is that Isabella has an antibiotic due every 4 hours....very time consuming and exhausting! We were very happy to have visitors in the hospital. Grandma Chris and Grandma Clara were up to visit and also Aunt Cam and Uncle Al. We hope that was our last stay in the hospital.
Bella is so happy to be home. She has been dancing around the living room in her ballerina skirt. She also loves her teletubby costume from Kathy Bridge and her daughter. Kathy, it has been very hot in Denver, and Bella will not take her costume off. Her head sweats while she demands to keep it on. Thank you to her chemo angel, Nancy for the wonderful salt water taffy and cute dress. That is very thoughtful of you to be thinking of Bella while you and your family are on vacation!
We get to see Steve this weekend!!! Bella, while in the hospital, slept every night with her "Papa's lotion." A lotion that Steve uses when he is at home. We can't wait to see you!!!
Love,
Ledesma Family
Tuesday, July 30, 2002 at 03:51 PM (CDT)
Day +69
Bella had a case of the hershey squirts last night and this morning. We called the clinic and they asked us to bring a sample in this afternoon. Once we got to clinic and gave them her sample, we went down stairs to pharmacy to pick up a few drugs and poor Bella vomited right by the counter, but luckily they had a trash can there!!! Pharmacy felt bad for her and gave her a talking Winnie the Pooh. Hopefully, this evening will be better.
(Daddy, Bella misses you!!! She was singing a song about you before her nap!)
Monday, July 29, 2002 at 05:19 PM (CDT)
Day +68
Bella has had a great time with her grandparents. Grandma and Grandpa Ullrich came down for a few days but had to leave today. They will be down again next week to help out. Steve made it safely to California and is getting ready to start his new job. If everything goes as planned, we will leave for California the end of September. Bella's counts remain good and she is scheduled for her next big test in August. Please keep Bella high on your prayer list!!!
Tuesday, July 23, 2002 at 01:55 PM (CDT)
Day +62
Bella continues to do well. We have been busy at clinic. Yesterday Bella received IVIG, wednesday she will get pentamidine, and friday she will get ambisome. Busy infusion week for Bella! The doctors called to tell us to reduce her cyclosporine to 50 mg from 90mg. Her level was too high...400! The normal level should be between 150-200. Hopefully her level balances out and we have no problems with GVHD!!
Steve is getting ready to make the move to California. He leaves Sunday and Bella and I are on our own for 6 weeks. He will be back every other weekend to help out. Grandma and Grandpa Ullrich are coming from Nebraska thursday. So Bella will be very excited to see them!!
Please pray for Bella's recovery and that her cancer is GONE!!
Friday, July 19, 2002 at 04:03 PM (CDT)
We have good results from Bella's cytospin of her CNS fluid. The results came back showing absence of malignant cells!! "YEAH for Bella!" as Bella would say. Bella had clinic this morning and received her weekley ambisome. This is an antifungal medication. She also got a dose of antibiotics. The antibiotics were for her fever yesterday which got up to 102 degrees. They believe it was from the intrathecal chemo they gave her, but they have to give her antibiotics just to make sure it isn't some kind of bacteria. Otherwise, she is doing great. Her eyebrows and eyelashes are growing back and it won't be long before she has a head of hair....Finally!! When Bella was born I bought Bows and ribbons for her hair but I have yet to use them!!!
Thank you all for your prayers and positive thoughts!!
Wednesday, July 17, 2002 at 08:37 PM (CDT)
Day +56
Bella had her spinal tap this morning. She was happy to see her friend Dr. Lang a.k.a. "Mr. Moonhat." (anesthesiologist) She unfortunately awoke from propofol very angry. They then gave her plateletts and she had to be pre-medicated with atarax (wich makes her sleepy). This settled her down and she slept for an hour. The doctors called this afternoon and said that her cyclosporine level was a little high and they decreased her dose from 90mg to 75 mg. They also said that her spinal fluid had one white cell and that they were going to send it for genetic testing. Please pray that it is NOT CANCER!!! Other than that, Bella has been very busy dancing around the house, watching Mary-Kate and Ashley videos, and practicing to be a BIG SISTER!! Steve and I are happy to announce that we will be expecting another baby due on our anniversary, February 19! Bella is going to be a great big sister. She already says that she wants to rock the baby, give the baby a bottle, and kiss the baby. We just pray that the baby is HEALTHY!!! The kids will be almost three years apart, but hopefully best buddies!!
Thank you to Bella's chemo angel Nancy for the great New Jersey t-shirts. Bella likes the sailboats and how they sparkle!! Thank you Karen and Dan for Bella's Birthday gift of a donation to the Leukemia and Lymphoma Society!! That is a perfect gift!!
Please pray for Isabella and all of the children fighting cancer and other life-threatening illnesses.
Wednesday, July 10, 2002 at 04:59 PM (CDT)
Bella continues to do well. The doctors have decreased her steriods to 6 mg one day and the next 3 mg. Hopefully, she will be weaned off all of her medicines by October!! She received PRBC (packed red blood cells) yesterday and she now feels more "peppy!" She also has some color to her. At first I thought something was wrong with her because she looked so pink, but it was from the blood transfusion, she now looks like a normal kid! Bella has her next big test on the 17th. Please pray for good results!!! Also, keep Jake and Gage high on your prayer list for they had big tests!!
Sunday, July 07, 2002 at 04:07 PM (CDT)
Hello Everyone!!
Sorry we havn't been updating often, but Bella keeps us very busy. While we have been home, Bella has been practicing for Broadway. She can recite all of the show tunes for "Grease!" She even does a dance to go with it. She is pretty good!!! She continues to amaze us each and every day. Our days consist of at least 4 hours in clinic followed by 1 1/2 hour stroller ride in the evenings. We are very busy with her medicines here is what she is on:
1. G-CSF IV 1 per day
2. Solumedrol IV 2 times a day
3. IV fluids at night
4. Acyclovir 2 times a day
5. Prilosec 1 per day
6. Amlodipine 2 times a day
7. cyclosporine 2 times a day
8. zyrtec 1 per day
9. atarax as needed for itching
10 ativan as needed for behavior
11. steroid creams for body 3 times a day
12. nystatin 2 times a day
13. clortrimozole 2 times a day
14. peridex 2 times a day
15. clortrimozole bottom cream 2 times a day
16. daily vitamin
17. amphotericin nose spray 2 times a day
18. IVIG in clinic every other week
19. Ambisome in clinic 2 times a week
20. Pentamindine in clinic once a month
(also blood products, every other day)
Just a few!!! We keep very busy here at the Ledesma house! Bella had a fun 4th of July. Aunt Cam and Uncle Al came over and we had dinner and then went to City Park to watch the fireworks. Bella hid at first but then was excited to see all of the colors and loud noises. We have been taking it easy and not doing too much so that we don't expose Bella to anything. So Far so Good!!
Our thoughts are with Nick, Dillon and Greg who were all admitted again to BMT. Hopefully, you are all out soon so that we can see your smiling faces at clinic!!
Monday, July 01, 2002 at 07:29 PM (CDT)
Day +40.
We've been out of the hospital for 1 week now, with daily visits to the clinic for labs, blood products, and IV medications. Isabella is doing very well. Her rash is much better after increasing her cyclosporine dose and applying strong steroid creams to the skin.
She remains active around the house, and insists on stroller rides at least 1-2 times a day. All of the tests from 2 weeks ago came back free of cancer, and her bone marrow is now made up of 100% donor cells. Her next set of test will be July 17th. She'll recieve intrathecal chemo at the same time.
Please keep Bella in your prayers!
Sunday, June 23, 2002 at 11:31 PM (CDT)
Day 32:
Bella continues to do well. Her WBC dropped a little to 2.5, but that is due to the lower GCSF level to try to control her rash. Her rash still continues to cause her stress and it seems to be getting worse. Poor Bella!!! We got to go on a 4 hour pass today and enjoyed being at home, went for a walk, and a nice car ride. Bella then protested her return to the hospital. It wasn't until Cam and Alan came by that she settled down and started to have some fun. We all enjoyed steak and grilled onions and peppers. Bella especially liked the grilled onion and sweet peppers!!! I bet not too many toddlers like that!!
We hope when we update tomorrow we will be at home and enjoying life again!!! Bella sends her kisses to everyone!!!
Sunday, June 23, 2002 at 01:12 AM (CDT)
Day 31
White count: 2.6 and ANC 1900!!! Her rash is driving her crazy, though!! The doctors are going to decrease her GCSF in hope that it will lessen her rash. (GCSF stimulates the White cells to grow) Bella enjoyed a 4 hour pass at home today and she protested her return back to the hospital. While at home, all three of us took a nap and then it was time to go back. We are looking forward to Monday when we can go home and hopefully get some good rest.
Today Bella was talented enough to unscrew her caps on her central line. I caught her just as it was about to come off. Now we have to secure them with tape and hope she doesn't figure out how to take the tape off. She still puts up a fight with her medicines and creams. She says, "Don't Move, Mommy," and "Don't do that!!" She is learning that she has to take all of her medicines before she can go home because once she takes her medicines she says, "Want to go Home!"
Please pray that Bella's cancer doesn't come back and that she remains healthy while having such an immature immune system. (That of a 3 month old baby).
Friday, June 21, 2002 at 07:34 PM (CDT)
Day +30.
Isabella's counts continue to climb!! Her WBC is 2.2 with an ANC of 1320! She didn't get to go on pass yesterday because of recurrent fevers, but she hasn't had another fever since last night. The docs put her back on antibiotics yesterday, but who knows if the antibiotics did the trick, or the side effect of the intrathecal chemo finally wore off.
Today we went home for 4 hours. Bella had a great time again running around the house. She even took time to eat a peanut butter and jelly sandwich, take a nap, and wear a dress instead of the purple gown. The hardest part is coming back to the hospital. She throws a big fit every time we walk into the BMT unit. Who can blame her? We've been here for 36 days straight. Cumulatively, we've been in the hospital nearly 110 days. Although this admission seems the longest, it is relatively the easiest to deal with, and has been the one with the least complications.
Bella's friend Cindy finally got to go home. She is doing very well. They're only three of us left back here. Hopefully Nick and Greg will get to go home soon, too. Bella is shooting for Monday, and has a clinic visit scheduled for Tuesday.
Thursday, June 20, 2002 at 03:04 PM (CDT)
Day 28 and 29:
Isabella had her spinal tap and bone marrow biopsy yesterday. As you all know, Isabella loves her "Milky and Mr. Moon Hat." She reunited with her milky and Mr. Moon hat yesterday for her tests. (Propophol and the Anesthesiologist) She was so excited and was eager to give "Moon Hat" her central line so that she could get her "Milky." While they did her spinal tap, they also gave her intrathecal chemotherapy (High dose ARA-C). She even got a larger dose because she is now the big "2." The preliminary results came back with a normal looking bone marrow and a spinal tap that included 1 white cell that did not look like a blast (cancer). We should get the cytogenetics back early next week to get a better idea if her DNA shows evidence of any cancer. We will also find out if the new marrow is Bella's or the Donor's. We are praying for it to be 100% donor. Bella has been running a little bit of a fever (probably from the IT chemo in her spine). Her rash is quite itchy and causes her great stress but is not spreading to her lower body. The doctors think it is GVH. (Graft vs. Host) Her cyclosporine (anti-rejection med)levels are a little bit low, so they are increasing her medicine tonight and hopefully it will lessen her rash.
Yesterday, we went on PASS to the house for 2 hours. Bella enjoyed listening to ELMO and playing with her toys. When we had to return to the hospital she was very upset. She said, "Back home, Listen to ELMO." The doctors said we could go on pass today for about 4 hours. Bella is taking a nap right now and we look forward to going home for a while after she wakes up. The plan for discharge is scheduled for Monday, hoping everything goes well.
Thank you to the Cohen family for all of the birthday gifts and balloons. It was nice seeing the both of you and we hope to see you soon in clinic! Thank you to all of Bella's chemo angels!! We have received so much support...Thanks!!!
Please pray for Bella and all of these cute and precious kids!!!
Tuesday, June 18, 2002 at 11:56 PM (CDT)
Day 26 and 27:
Bella has had a great time with all of her family. Grandma Ullrich and Aunt Cam babysat Bella and Julia while we all went out for a nice dinner. It was very relaxing and nice to have dinner together. Julia was happy to see mommy and daddy when they returned! She was tired from playing with her cousin! Aunt Paula-Ann and Uncle Brian left for San Francisco this morning and Grandma and Grandpa Ullrich leave tomorrow. Bella had two birthday parties. She enjoyed two cakes and her favorite part was dipping her finger into the flowers and tasting each color. Thank you everyone for the gifts!! Bella has mastered putting two fingers up when you ask her how old she is!
Please pray for Bella's results to be clean tomorrow with her spinal and bone marrow biopsy. She goes in at 7:45 a.m. for her tests and we are very nervous! She has had only 1 clean spinal tap just before we came into transplant. They will also determine what percentage of her bone marrow is donor cells. We want it to be 100%!! We need all of your positive thoughts!!!!!!
Sunday, June 16, 2002 at 10:00 PM (CDT)
Day +25.
Yesterday (6/15) was actually day +24 (typo). Isabella is doing really well. Her WBC count is hanging in at 0.7 (third day in a row), and now she has a rash on her chest/back, neck, and head. They think it might be graft vs. host. A rash is the most common form of GVH. If this is all she gets, it's probably a good thing, 'cause it may also provide graft vs. any remaining leukemia - which we know is already gone anyway!!!!
She is eating enchiladas, broccoli, cottage cheese, and Smarties all day long. She's getting better at taking her medicine, including the DREADED nose spray. She's singing songs with her videos, and she's having a GREAT time playing with Julia!!
Julia made a mad dive for Isabella's cupcake sprinkles (minus the cupcake) and Bella said, "Julia! Be careful!!!" Julia looks like she's about to get up on all fours and start crawling.
Bella also got a kick out of seeing her grandma and grandpa Ullrich today. Now its 9pm and time to watch Elmo videos and get ready for bed... in about 4 hours!!!
Happy Father's Day to all the pops out there!! And remember to enjoy every minute with your children!!
Saturday, June 15, 2002 at 06:14 PM (CDT)
Day 23:
Bella has had a pretty good day. She played most of the morning and has a new favorite movie....Fantasia. I think I will have to buy it for her for her birthday. It will have to be DVD because she only wants to watch the dancing flowers and the mickey mouse part.
Her WBC still holds steady at .7, Hopefully we are really engrafting this time! I wish it would hurry so that her risk for infection will go down as WBC and ANC goes up!!
Uncle Brian and Aunt Paula-Ann have arrived but they are stuck at the airport. Unfortunately, there is a little storm at DIA and they can't unload the luggage from the plane until it stops thundering. So we will have to wait a little longer before we can see them!! Bella is so excited. She yells, "Uncle Brian." She also says that she wants to give Julia a bottle.
Bella's Grandma and Grandma Ullrich are also coming down. They are running a race with Aunt Cam and Uncle Al for the Children's Cancer Research tomorrow at Washington Park. Go Team Bella Go!!! They also raised quite a bit of money in sponsorships for the race!
That is all for now!!!!
Continue those prayers!! Thank you everyone for your messages in our guestbook. We read them every day!
Friday, June 14, 2002 at 09:13 PM (CDT)
Day 23:
Bella had a very good day. She played and watched ELMO..ALL DAY!!! The doctors discontinued her TPN. So it is now up to Bella to eat!! Her WBC went up to .7, so we are slowly but surely getting better!!
Bella looks forward to her Aunt Paula-Ann and Uncle Brian coming tomorrow!! This will be the first time she will meet her cousin Julia!!
Please pray for Nick, Cindy, and Greg back here in BMT and her friends Jake, Hannah, and Dillon who are still recovering from BMT!!
Friday, June 14, 2002 at 12:28 AM (CDT)
Day 22
Bella's counts are up a little bit... .6. We hope tomorrow will bring even higher WBC!! Today, Bella played most of the day. She was disconnected most of the day from her IV. They stopped her vancomycin antibiotic but we are still doing meropenum. They are cutting back on her TPN because she is starting to eat a lot!!
She did very well all day with her medicines but tonight she had a fit. She spit out her cyclosporine and had to retake it. She gave herself a severe bloody nose. She looked like she was in a car accident! Yuk!!! Trying to clean it up was not fun. The only way we could get her clean was to tell her that mommy wasn't going to hold her until she cleaned the blood off her face, hands, arms, and legs. She cleaned herself right up!!! We are now going to start getting teaching lessons from the nursing staff for when we go home. They teach us how to draw up her medicines and what to look out for. It is exciting to think that we will soon be going home, but scary to be home without constant supervision and monitoring!
Pray for Bella to recover soon!!!!
Wednesday, June 12, 2002 at 06:15 PM (CDT)
Please pray for Morgan's family. This morning Morgan became an Angel. There is not much you can say or do except ask, WHY? Children are not suppose to die. Please take a moment to send thoughts to Morgan's family.
Bella's counts still remain at .4. We are waiting for the day when Bella can come home. The house is ready for her, just need her counts to come up!!
Wednesday, June 12, 2002 at 12:09 AM (CDT)
Day 19 and 20
Bella's personality and behavior are back to normal. Thank Goodness!! She enjoys being disconnected from her IV pole so that she can go for wagon rides and walk on the treadmill. She continues to protest her medicines, but I can't blame her. They smell aweful!! (skunk weed) With each day we come closer to going home. She is now on cyclosporine by mouth and will discontinue antibiotics soon. On day 28, we will find out if her cancer is gone. They will do a spinal and bone marrow biopsy. This makes us very nervous. Please pray for Bella to have clean results!!! Bella's counts today remain at .4. tic..toc...tic...toc
Please pray for Bella's friend, Morgan. She needs a miracle. They found that she has a fungal infection in her brain. Last night she had a stroke and stopped breathing. Please keep her high on your prayer list!!!
Love
Ledesma Fam
Sunday, June 09, 2002 at 11:54 PM (CDT)
Day +18
Today Bella's counts jumped up to 0.9!!!!!! Ya-Hoooooooo! It was at 0.2 for the longest time, and went up to 0.3 yesterday. As a point of reference, her counts never went below 0.9 with her prior chemotherapy. Transplant is a whole other ball game.
Hopefully, her counts will continue to rise. If so, we'll be able to go home a few hours a day (on pass) this week, and probably be discharged by the end of the week. GO STEM CELLS, GO!!
Other news, today Denver had an orange/brown haze with ash floating everywhere. The Rocky Mountains are ablaze with multiple huge and out of control fires.
That's all for now. Please keep praying for all the kids back here in the BMT unit.
Saturday, June 08, 2002 at 03:07 PM (CDT)
Day +17
Bella continues to be very or should I say EXTREMELY craky. It takes three people to change her diaper. One to hold her legs, one to hold her arms and a third to do the cleaning and creams. The pain medication they have been giving her works for a while and then her pains come back. They are going to take her down for a stomach xray to make sure they are not overlooking anything. Her counts moved to .3 but that doesn't mean anything they say. Once it goes above .5, then you will start moving up.
Hopefully, Bella will begin to feel better soon. Steve and I are very busy trying to get the house ready for her to come home and trying to deal with her crazy behavior. All she wants to do is say "NO," and to bite, hit, kick, and scream until they give her medication to sedate her.
Please pray for Bella's recovery!!!
Bella has more pictures before her cancer at her other website
www.picturetrail.com
(photo album name: ledesma1)
Friday, June 07, 2002 at 02:34 PM (CDT)
Day +16
Bella has been very cranky these past couple of days. We are now using a drug for pain. Hopefully this will help her. She continues all of her medication and protests with all of her might. It takes three of us to hold her down. Boy, I can't wait until we get home. But then again, we won't have I.V. benedryl to calm her down when she gets out of control.
Her counts hold steady at .2, tic...toc..tic...toc!!!
Wednesday, June 05, 2002 at 05:52 PM (CDT)
Day +14
I can't believe we have been here for 20 days now!! This admission has gone really fast. No change in the WBC (white blood count). It remains steady at .2 and hopefully will rise in the upcoming days. Bella's friend Dillon is getting better every day. His WBC is now 2.4 and he is preparing to go home. He is at +15. Morgan, a cute little girl with ALL, is now here in BMT. We have grown very close to all of the families back here!!
Bella is taking a nap right now and Steve is at home interviewing Housekeepers. He said the second housekeeper he interviewed was amazed at all of the restrictions we made including, must use our Hepa vacuum, must not have a cold, must have our house be the first house cleaned, must wear shoe protectors, and must clean when Bella is not home. We will see if we can find such a person!
Tuesday, June 04, 2002 at 02:44 PM (CDT)
Day +13
Bella had a rough start this morning. She hasn't been feeling well. She has been trying to vomit and has been running a fever. On top of that they gave her a medication called IVIG, which gave her the chills. She is finally settling down and is watching Harry Potter. She loves this movie. No improvement on her blood counts yet. We are still hoping they do something this week!!
Even though she has received radiation to her head she is still bright as ever. The other day she stated, "A triangle has three sides," and followed it with, "to draw a circle draw a sun." Pretty advanced for a 23 month old baby!! Everyone is very fascinated with her vocabulary and her knowledge of the environment around her. To get my attention when I am on the computer she says, "Mommy, turn the computer off!!" That is what she is telling me now. So I better get to work and start reading the Rainbow Fish.
Hope to update soon with increased WBC!!!
Love,
Ledesma Family
Monday, June 03, 2002 at 10:59 AM (CDT)
Day +12
Bella has done well these past couple of days. She is now on isolation again because of a runny nose. She had a chest x-ray that came out clean yesterday. They have added another medicine to Bella's schedule. Blood pressure medicine to control her pressures. She has been running high so they give her a medicine that goes under her tongue and is absorbed quickly into the bloodstream. Her counts still remain the same. Dr. Giller thinks that by the end of this week that they should start moving.
Bella continues to be happy for the most part. She has been playing with her grandma Chris. This gives mom and dad a chance to go home and have some down time. Steve has spent two nights alone with Bella. This gives me a chance to go home and get a good nights rest.
Yesterday, on my way home, I saw two moms pushing their kids in their strollers. It was so nice outside and I thought, "They don't know how lucky they are just to be able to take the children outside for a walk." Bella loves to go for walks to the park!! Outside of our hospital window there is a little playground and Bella looks outside and says, "Go Swing!!, Lets GO!!"
Bella looks forward to seeing her Aunt Cheryl and Uncle Bruce this weekend and her Uncle Brian and Aunt Paula-Ann the following weekend.
Please pray for Bella's counts to recover!
Friday, May 31, 2002 at 12:00 PM (CDT)
Day +9
Bella had a good day yesterday. She finally is off isolation. That means that she can now go to the family room and the playroom. Her appetite is decreasing, but we are still trying to find foods that she will eat. She still complains of stomach pains and is running a fever this morning. If it doesn't clear, they will take her down for a chest x-ray.
wbc .3
hgb 10.2
platelet 15
Wednesday, May 29, 2002 at 11:12 PM (CDT)
Day +7
Bella continues to do well. She does complain of stomach pain throughout the day. She protests her mouthcare and medicines. Hopefully her counts will recover fast so that her risk for infection goes down. When her ANC <500 she is at greatest risk for infection. Today, Isabella's ANC is 92.
WBC .2 (up from .1)
HGB 11
platelet 59
We are hoping that Isabella's new bone marrow will kick in by the end of next week. We can only wait and see!!
Bella sends her kisses!!
Keep Bella high on your prayer list and please keep Dillon +8 and Nick +28 in your prayers too!!
Tuesday, May 28, 2002 at 11:18 PM (CDT)
Day +6
No news is good news!! We continue to move forward with mouthcare, bottom care, baths, and medicines. Doing all the above takes all day and night. We don't have much time to update the website!! Bella has had a good day. She played most of the day with daddy, grandma Diane and grandpa Ray. Unfortunately, Bella's grandparents left for California this afternoon. We will get to see them again once we move to California when Bella is stable.
We will continue on the following medication until Bella's Bone marrow recovers.
1. nystatin, clortrimozle, peridex
2. G-CSF
3. Meropenym,
4. Vancomycin
5. Acyclivir
6. solumedrol
7. TPN/Lipds
8. Cyclosporine
9. Zyrtec
That is all!!!!
Please pray for Bella and all of the kids here at Childrens. (Especially, Dillon, Nick and Cindy)
Saturday, May 25, 2002 at 05:45 PM (CDT)
Day +3
Isabella hasn't felt well for the past day or so. She was nauseated most of yesterday, and vomited a couple times. She still has plenty of diarrhea. This morning she had a fever, and she's been sleeping pretty much all day. When she is awake, you can tell she doesn't have as much energy as usual, and she hasn't eaten anything either.
Grandma Diane and Grandpa Ray are still around, helping us out. Grandma Chris and Granpa Allan had to head back to Nebraska.
And the Chemo Angels are still sending lots of support and fun through the mail.
Today's counts:
WBC 0.1
Hgb 9.9
Hct 28.2
Plt 16
Bella got platelets and red blood cells today. Please keep praying for her. Hopefully she'll feel better soon!
Wednesday, May 22, 2002 at 02:17 PM (CDT)
Day ZERO.
Today is the day! Isabella now has a new birthday. She recieved her cord blood transplant today at ~11:00 am... a total of 53 cc of fluid designed to last a lifetime!! The whole process really wasn't much different than your usual blood or platelet transfusion. Total time 45 minutes. They gave her Tylenol and Benadryl just prior, so now she's sound asleep. They also placed pepermint scented gauze throughout the room. The preservative in the cord blood is smelly, and Bella will smell like the perservative for a day or so. Some say it smells like heavy garlic. Ceyonne says it smells the same as when you just open a can of corn. So quick, run to the kitchen and grab whichever you can find, and smear it on the walls. It'll be just like hangin' out in Bella's room! The cord blood came from a boy, so whenever someone genetically tests Bella's blood in the future, it'll say she's male. Also, her blood type used to be O+, but now will be A-.
Now it's a matter of waiting around to see what happens next. She'll probably start to experience the maximum side effects of the chemo and irradiation over the next week (mouth and skin sores, etc). She already has diarrhea and is in isolation (she can't leave the room) until her poo tests negative for serious infections. And in ~2-3 weeks, the new bone marrow will kick in and she'll have problems with graft (transplant) cells attacking her body (called Graft vs. Host, GVH). The hope is that she will have just a little GVH, enough to kill any remaining leukemia, but not a lot of GVH that it causes serious long term health problems with other organs (eg heart, liver damage).
Other good news is that her spinal tap from last friday was entirely clean of cancer cells, including DNA testing. We are hopeful that the irradiation did the trick in killing off all the CNS tumor cells. Yesterday (Day-1) is called the "day of rest." It's is name that because Bella did not get any chemo. It's a misnomer, though, because there is nothing restfull about it. She was started on anti-rejection medicine (cyclosporine) IV, anti-viral medicine (acyclovir) by mouth, and an anti-fungal medicine (ampho B) nose spray. This did not make her happy. The nose spray is twice a day, and STINGS! Overall she is in very good spirits now. She sings and plays with all the grandparents. Ray, Diane, and Alan came yesterday. Clara came today. Chris is still here. She's one happy kid again.
Today's counts
WBC 0.2
Hgb 10.7
Hct 31.2
Plt 66
segs 41.2 (ANC 82)
lymphs 5.9
eos 52.9
Saturday, May 18, 2002 at 10:34 PM (CDT)
Day -4.
Isabella was admitted to the hospital yesterday. The first order of business was getting her a new broviac (venous catheter) and doing another spinal tap with intrathecal chemotherapy. The surgeon said it was a good thing we replaced the catheter because it would have been a matter of time before it would just slip out.
We don't know the results of her spinal tap yet.
Then they gave her anti-thymocyte globulin (ATG). It's a protein derived from horse serum that basically wipes out the part of the imune system responsible for fighting viral infections or promoting rejection of transplants (i.e., lymphocytes). She gets this medicine once a day for three days. Because of the way it works, it makes people have high fevers, shaking chills, hives all over, and sometimes low blood pressure. Isabella has them all, except low blood pressure. You can tell she DOES NOT feel well. She was up every thirty minutes last night with either fevers/chills, hives, or vomiting. Sometimes doctors call this kind of medicine "shake and bake" because of the side effects.
Today she started the high dose ARA-C, which she will get daily through Monday (day -2). She had ARA-C with her last two chemo treatments.
Tomorrow she will start cyclophosphamide (cytoxan), which also causes terrible side effects, including serious bleeding from the bladder. Because of this, she will have a urinary catheter placed to help flush the bladder of the drug, and keep an eye out for bleeding. Poor Bella!
She has already been started on meripenem, a powerful antibiotic that kills a broad range of bacteria. The hardest part for us is trying to give her mouth care (to kill bacteria and fungus in the mouth and gut). This involves brushing her teeth, followed by 3 different medications given 20 minutes apart. We do this three times a day. One of the medications makes her vomit every time. Unfortunately, this means she vomits up her most recent meal.
On the flip side, Grandma Chris, Aunt Cam, and Uncle Alan have been around providing much needed support and playful distractions. We hope that she will feel better once she finishes the ATG and cytoxan, but everyone says things usually get a lot worse in about 10 days or so.
Please keep praying for Isabella, and anyone who has to endure so much pain, especially when they cannot understand what is happening, or why.
Today's counts:
WBC 1.0
HGB 11.4
HCT 33.4
PLT 77
we don't know what the count breakdown is for specific WBC cells today. Yesterday, she had 85% segs and 11% lypmphocytes (normal is 21-49).
Friday, May 17, 2002 at 12:28 PM (CDT)
Day -5
Well, We made it. We have been formally admitted to the BMT unit. She did very well with coming back into her room except for one thing...her crib. Isabella, will not touch her crib. Boy, are we in for the long haul!
Bella will undergo her spinal, catheter placement, chemotherapy, and ATG. ATG is a serum from a horse that is used as an immunosuppresant. This drug has many reactions. Hopefully, Bella will not have a severe one.
**Isabella Did very well with her surgery. The doctors placed her new catheter on the opposite side of her chest and it works great. She is complaining of a little bit of pain, but she should start to feel better. The surgeon said it was a good thing we got a new line because this one just slid right out.
Bella is now starting her ATG. She received benedryl and is now sleeping..only time will tell what kind of reaction she will have.
We will continue to keep everyone updated!!
Please pray for Bella
Thursday, May 16, 2002 at 07:42 PM (CDT)
Day -6
Bella has become addicted to the anesthesia they give her for her procedures. Today, in radiation, Isabella was screaming for her "milky" (propaphol sp?) She then asked, "Where is moon hat?" That is what she calls her anesthesiologist because he wears a blue scrub hat. She then attemted to sneak down the pathway where she gets her radiation so that she could be sedated. Today was Isabella's last day of radiation. She gets admitted tomorrow at 9:30. They will also have to replace her catheter at 1:30. They did not have the paperwork to clearly identify that she had a double cuff catheter, so they are replacing it.
We are very busy getting ready for BMT. We are preparing everything by washing her things w/ germicidal wipes and placing them in trash bags (which we will wipe down right before we take them into the unit). Thank you Tami and Jeff for the delicious meal. We are very grateful for all of our friends and family!!!
Please pray for Bella. Thank you so much to Bella's cord blood donor. You are giving life to our precious daughter. Bella's cord blood comes from University of Colorado!!!
Love,
Steve, Ceyonne and Bella
Tuesday, May 14, 2002 at 10:45 PM (CDT)
Day -8
Isabella had a very eventful day. We started out at 7:30 with 200 rads to the front of her total body and returned to clinic for hydration. We came back to radiation at 2:00 for 200 rads to the backside of her total body. We returned to clinic for a red blood cell transfusion when we noticed that Bella had some pain around her catheter site. They found that somtime in radiation they had pulled on her catheter and the cuff came out. I was very upset!!! After being seen by Dr. Giller and consulting with her surgeon that put in the line they found that she fortunately, has a double cuff line. I will be very anxious to talk with the radiation people tomorrow to make sure that this doesn't happen again!!!! We don't want to put Bella through another surgery because of an error by the staff!!!
Overall, Bella did very well today! Her face is really puffy from the radiation and the steriods. It is also very red (like a sunburn).
Dr. Giller told us the results of her Bone Marrow Biopsy and ....it's Clean!! Unforntunately, her CNS (spinal fluid) still shows cancer cells. Dr. Giller told us that he will not be concerned until 1 month after transplant. It should be cleared up by then!!
We will be admitted to the bone marrow unit Friday morning at 9:30. She will also undergo another spinal tap at 11:00.
Time has gone by so fast. It does not seem like it is time to get admitted again. Hopefully, this is the last time!!!
Cam and Alan came over this evening and cooked us a lovely dinner. We had cornish hens, shrimp, asparagus and wine. It was a very nice evening. But we do the total body irradiation again tomorrow at 7:30 a.m.
Thank you very much to her chemo angels. You guys have been great!!!
Thanks, and please pray for our little Baby Beluga!!! Hopefully, Bella's friend Cindy will get to go home from BMT!! Jake, you looked great today!!! We even got a "wave." You are making great progress. I think all of our families need a retreat for about two weeks once our babies are all better.
Sunday, May 12, 2002 at 01:48 PM (CDT)
Happy Mother's Day!
Birth-Tears
When I was a little
Teeny-tiny baby
And I came out of
My mommy's womb,
I cried.
That's what most babies
Do when they are born.
Do you know why
I cried when I was born?
I cried for the same
Reason that most babies
Cry when they are born.
I cried because I was so happy.
I cried because I got to come
And live in this family.
I cried because God was
So good to let me have
The best mommy in the world.
And that is why most
Babies cry when they are born...
They are happy birth-tears
Because we are so happy
To be in the best families.
-Mattie J.T. Stepanek
Isabella is doing well. She was excited to see her Grandma Clara and Grandpa Clayton. She is having fun playing with her dolls dressing them, feeding them, and putting them to bed. We are getting all the playtime we can get before we are admitted.
I hope all you mothers are pampering yourself today....or should I say, being pampered!!
Love,
Ceyonne, Steve, and Bella
Saturday, May 11, 2002 at 02:18 PM (CDT)
Day -11
Isabella continues to do well. She has been playing all morning anticipating the arrival of Auntie Cam. Isabella gets only adult playmates because her little friends are germ carriers. Isabella's counts drop with each day and she can no longer go to any public places. She doesn't mind though. Playing at home is a joy compared to being stuck in a little hospital room. Bella will not be happy when we go back to the hospital. She will have to sleep in a crib. (a first) I will either have to sleep in a rocking chair or go home. Isabella has been sleeping through the night at home but I am sure it will change when we go back to the hospital. (vitals, meds, beeping iv poles, and feeling sick) I can't wait until all of this is done and Isabella can be a little kid again.
Please pray for Bella and all of her little friends.
Thursday, May 09, 2002 at 08:10 PM (CDT)
Day -13.
Isabella had a very busy day today. It started at 7:30 in the morning with cardiology. She was sedated for over 2hrs for a cardiac stress test. They got her heart beating so fast (190 bpm) that she vomited. Then, just as she started to wake up, she was sedated for brain irradiation. She woke up at 1pm, and this was the first time she could eat or drink since last night. Finally, we had just one appointment left: opthalmology. We got there at 1:30 and didn't leave until 5:30. INCREDIBLE!!!!
Bella's sleeping right now. One of the eye drops used for her eye exam causes, of all things, SEDATION! She just can't get a break.
Tomorrow is her last day of cranial irradiation. Two big events planned for Monday are another spinal tap, and a neuropsychiatric appointment - where they asses how smart Isabella is (you know, is she more like a super genius or just a genius). She starts total body irradiation on Tuesday.
Today's counts:
WBC cant remember
Hgb 10.8
Hct 30
PLT >100
ANC 578 (time to start wearing a mask)
Wednesday, May 08, 2002 at 10:49 PM (CDT)
Day -14
Isabella had a good day today. She did wonderful at radiation oncology this morning. She did not even cry. She is such a brave little girl. Bella played all day and then took a 3 hour nap in the afternoon. This gave me a chance to dust the blinds and clean the windows. (preparing for Bella to come home from BMT) Bella will visit cardiology, radiation, and opthomology, and clinic tomorrow. Hopefully, everything goes well.
Please keep Bella high on your prayer list!!
Tuesday, May 07, 2002 at 05:16 PM (CDT)
Isabella had another eventful day. She is on day 2 for cranial irradiation. She does very well and is such a Big Girl!!! Yesterday she was outside walking w/ Aunt Cam and collapsed. The doctors think she may have had a seizure. They think it might have been caused from the double intrathecal chemo they gave last week. Hopefully, it doesn't happen again!! The radiation makes Isabella cranky and she has also lost her appetite. The only thing she wants to eat is popcorn. Hopefully we will graduate from the popcorn diet soon! We tell Isabella every time she undergoes radiation, "Kill all of those cancer cells!!!" She goes to battle every day this week and then will start total body irradiation on tuesday.
Grandma Chris left for Nebraska this afternoon. Isabella will be very sad. She played hard all week long. Don't worry Bella, Grandma will be up next week. As for everyone else, they will be up around transplant time. We will all celebrate Bella's "re-birth" day together!
Please pray for Bella and all Children fighting cancer!!
Saturday, May 04, 2002 at 09:06 PM (CDT)
Isabella is having a very good weekend. She liked playing with Grandma Chris and Grandpa Alan. She even gave Grandpa Hugs and Kisses. Her Great Grandma Ullrich and Grandpa Ullrich were here too!! Grandpa Alan cooked up yummy steaks and we all went to sleep happy! Isabella did very well with her spinal tap. She hasn't been too cranky, thank goodness for Zofran! (anti-nausea med) We are going to take it easy this weekend and hang out at the house because we will begin our busy week again on Monday. Isabella starts her cranial irradiation Monday morning. She also has a few other appointments. Poor Isabella will have to be sedated every day because she is too little to hold still for her procedures.
Thank you so much to Isabella's chemo angels Nancy and Ann. Nancy sent an adorable hat with flower decorations. Bella likes to decorate everything around her with the flowers. You guys have been very very generous. Thank You. I hope to get some of her artwork sent out to you both with a picture of Bella.
Please pray Bella and all of her friends!!
Love,
Steve, Ceyonne and Bella
Thursday, May 02, 2002 at 05:01 PM (CDT)
Okay! Today is day -20. Yesterday Isabella had 8 different clinic appointments, and boy was she crabby!! Mommy coudn't take it any longer and dissappeared for about 14 hrs (most of it was nighttime sleep, though). Today was much better. Aunt Cam played with Bella much of the day, so her mood wasn't so bad.
Bella saw the dentist today (part of the pre-transplant evaluation). They said she has a good set of chops.
She also underwent "irradiation simulation." This is where they do all the planning for the cranial irradiation (once a day for 5 days next week), and Total Body Irradiation (twice a day for three days the following week). She'll have to be sedated for each of the procedures, and even intubated (tube placed in lungs to support breathing) for 3 of the 6 TBI procdures (when they need to lay her face down).
Unfortunately, she'll get a larger dose of irradiation to the head than we were planning, 2200 cGy instead of 1800 cGy. This puts Bella at greater risk for hormornal and cognitive deficits down the road. She'll get the higher dose because the leukemia in her spinal fluid has not gone away, even with the weekly spinal chemotherapy. Both the spinal taps from last week and two days ago had cancer cells present. Her bone marrow continutes to remain cancer free. She's scheduled for another spinal tap tomorrow. So PLEASE keep praying for the best.
The good news is that her Grandma Chris and Granpa Alan are coming to town tonight, and they're bringing GREAT grandma and grandpa Ullrich. They'll be in town about 3 days.
Today's counts:
wbc 4.2
hgb 12.3
hct 35.1
plt 43 (yesterday's was 44)
segs 14%
ANC 600 (yesterday's was 2,394) - she's been off gCSF for 3 days
lymphs 69%
monos 16%
eos 0.1%
Bye for now!
Sunday, April 28, 2002 at 11:25 PM (CDT)
Isabella has had a lot of fun with her Aunt Rachel and cousin Jacob! She is so gentle with Jacob. Bella feeds him his bottle and gives him his pacifier ever so gently. She accidently bumped into him and said, "Sorry Jacob." She is very considerate. Unfortunately, they are leaving tomorrow. We have been going to the park every day and Bella loves to swing!!! She sits in the swing for at least an hour or so!
Her moods have improved. She is no longer cranky ALL day. It was probably related to the intrathecal chemo. We go in for more intrathecal chemo on Tuesday. The four cells they found in her spinal fluid were positive leukemia cells. This means she has to receive the intrathecal chemo every week until BMT. Hopefully, the radiation she receives will take care of this once and for all!!!
They rescheduled her transplant to take place on May 22. She will begin radiation to the head on the 7 and total body irradiation on the 14. We will be admitted on the 17th for chemo and the 22nd, will be her "re-birth" day. Until then, we will be going to appointments every day for pre-bone marrow transplant work up (EKG, GFR, Pulmonary, Dentistry, Opthalmology, Dietary and exam consults...etc!!!).
Please pray for Isabella!!!
Good Night.
Friday, April 26, 2002 at 01:27 PM (CDT)
Isabella's labs yesterday;
WBC 1.6
RBc 3.31
HGB 26.9
platelet 118
segs 46.2
lymphs 47
monos 6.3
eos .1
basos .4
We had a very eventful couple of days. After clinic with intrathecal chemo we came home and that night Isabella had headaches, vommiting, and eye pain. We ended up getting addmitted to the hospital overnight for observation. Dr. Albano decided we should do an MRI to make sure she does not have any leukemic tumors in her head. We should get the results back sometime today. Her spinal fluid showed 4 suspicious cells that they were going to send off for cytogenetic testing to see if they were cancerous. We should get those resuts back this evening.
Bella has been very cranky. She plays for a little bit and then is upset for most of the day. They think it is related to the intrathecal chemo. Hopefully, she will get better in the next couple of days because it is very hard on her, steve, and myself.
Please pray for Isabella and all of the kids battling cancer.
Love
Steve, Ceyonne and Bella
Wednesday, April 24, 2002 at 11:58 AM (CDT)
DAY -20 (countdown until transplant)
Isabella's labs for today:
WBC 2.8
RBC 3.27
HGB 9.5
platelet 156
segs 13.4
monos 4.4
ANC 375...yeah, on our way up!
Isabella had a bone marrow biopsy and a spinal this morning at clinic. She did very well and we should get the preliminary results back this afternoon. We spoke with Dr. Giller and he gave us the date, May 14, as Isabella's transplant day. Dr. Giller is still going to talk with other physicians about how to approach her care but at this point he reccomends transplant with 1200 rads Total Body Irradiation and an extra 600 rads to the Brain. He talked with seven doctors from east coast to west and gained valuable information about Isabella's cancer. He found out that the kind of translocation Isabella has MLL gene rearrangement with a complex set of genetics (10,11) indicates a high relapse rate of 75%. That is why they want to proceed with transplant and radiation to the head. Isabella's cord blood match has two collections saved seperately, so if we need the other bag down the road it is available for her use only.
Isabella continues to play hard. She needs two naps a day to recuperate from all of that running around. She was sad to see her Grandma Diane and Grandpa Ray leave back for California but anticipates their arrival in May. We are planning a garage sale this weekend to prepare for our move to California. So if anyone wants to come by and take a look around, please do so. We have a ton of baby stuff!!
Hope everything is well and we will update when we get Isabella's test results back!
Please pray for Isabella and all of the children fighting cancer!
Love
Steve, Ceyonne and Bella
Saturday, April 20, 2002 at 10:55 PM (CDT)
Today's counts:
WBC 2.5
Hgb 10.1
Hct 29.5
Plt 35
segs 2%
ANC 50
Guess what! We are writing this from our home!! yeah! Dr. Albano got sick and tired of us (our plan all along) and finally sent us home. Isabella has been in overdrive all day long, running around the house, singing songs, demanding playful games with us, etc. Monday we go to clinic for blood tests, and she'll probably get a platelet transfusion. From there we'll try to map out a time line for transplantation. In the mean time, we are going to take advantage of Bella's grandparents and put them to work while they're here!!!! Ha ha ha ha!.
Now it's off to bed. Hopefully we can get Isabella on a regular sleep schedule again.
Good Night!
Friday, April 19, 2002 at 11:50 PM (CDT)
Today's counts:
WBC 1.7
Hgb 10.2
Hct 29.2
Plt 44
segs 1.3%
ANC 22
monos 0.4%
basos 0.1%
eos 0.1%
Isabella had a very exciting day today. Grandma Diane and Grandpa Ray flew in from California, and Grandma Chris drove in from Nebraska. She hasn't seen Grandma Chris, yet, but Bella knows she's here. Bella took a walk around the lobby of the hospital. They have several tain sets arranged. Of course, Grandpa Ray had to go down and look around, too (even though Bella was already back in her room). Then Bella went to the play room and created some spin art and played foozball.
Bella's going to sleep now, and so are we. We'll be dreaming about high cell counts for Isabella so we can all go home!!!! I think we've been in the hospital for 28 consecutive days!
Take care.
Thursday, April 18, 2002 at 10:03 PM (CDT)
Isabella's labs:
WBC 2.0
RBC 3.83
HGB 11.0
HCT 31.8
platelet 67
segs .3
monos .6
basos .2
Last night Isabella did wake up at 11:00 and wanted to watch "Babe, Pig in the City." I can't wait until we get home and get into a normal bedtime routine. Our day consisted of a wagon ride around the hospital, reading books, and playing with daddy. I went home for about 3 hours this afternoon while Steve played with Isabella. Ray and Diane fly in from California tomorrow morning and hopefully Bella's counts will come up so we can enjoy them at home. Cam and Alan are here right now visiting, singing, and reading to Bella. Our good friend Allison is on call tonight for Oncology and BMT. We just found out that Allison and Kesh are engaged....Yeahhh!!! Kesh is Steve's attending at University Hospital. We told Allison that she could come hang out in our room and hide if she gets too many calls.
There are a lot of little kids that need your prayers...Keep them in your thoughts!
Love, Steve, Ceyonne, and Bella
Wednesday, April 17, 2002 at 09:14 PM (CDT)
Isabella's labs for today:
WBC 2.1
RBC 3.82
HGB 10.9
HCT 31.8
platelet 86
segs .2 :(
monos .2
Bella's counts went back down... :( Hopefully, tomrrow they will be up! We had an uneventful day. Isabella had fun this morning with Karen (Austin's mom) and Meredith. Meredith is only 9 weeks old. Bella held her and gave her favorite "moon rattle" (Bella's favorite rattle) while kissing her forehead. When she saw Meredith she said....."Baby Brother." Steve has been teaching Isabella to say that she wants a baby brother. (Not Yet, Steve)
What ever was causing her pain has come and gone. She had a wonderful day. Grandma Clara and Great-Grandma came to visit this afternoon. She read her new books and then took them downstairs and showed them the "balls" (jumping ball exhibit). Isabella took a walk outside and practiced "slow feet and quick feet." Tommi, the activities director, came to visit again. Tommi and Isabella played with a sticker book that Cam and Alan brought her. Tommi asked Isabella (pointing to Winnie the Pooh), "Who is that?" and Bella replied, "You know!" It was hilarious!!
This evening my friend "SSSUUUE" (that's what Bella calls her) stopped by with her famous coffee cake. Isabella and Sue like to play a game of blowing kisses. Sue had to leave early because she had rehersal for her comedy act. Sue performs at Comedy Sports almost every weekend so she definitely knows how to lighten our moods!
After this long day, Isabella finally fell asleep at 8:00. Hopefully, she doesn't wake up at 11:00 wanting to play!!!
Have a wonderful evening!
Please pray for Isabella and all of the children fighting this "monster" called cancer. Good Night!
Tuesday, April 16, 2002 at 06:23 PM (CDT)
Isabella's labs for today:
WBC 1.9
RBC 2.61
HCT 21.4
platelet 23
segs 1.6 !!
monos .2
basos .2
Better counts today! If they show improvement tomorrow we might get to go home. Dr. Albano said Isabella is scheduled for mid-May Bone marrow transplant with a 5/6 cord blood match. There are two matches here at CU and one in New York. They will do more testing to see which is better. (GO CU!) Isabella received red blood cells and platelets today so her counts should look better tomorrow. (Please donate blood or platelets here at Children's under Isabella's name and if you are pregnant please donate your baby's cord blood!!)
Isabella had a rough day today. She had the same problem she did yesterday. I don't know what is causing her so much pain, but it took tylenol, benedryl, and finally ativan to settle her down. Hopefully we will get to go home soon and she will be in her own environment without nurses coming in and bothering her every 3 hours!
Please continue to pray for Bella!
Tuesday, April 16, 2002 at 12:18 AM (CDT)
Isabella's labs for today:
WBC 1.9
RBC 3.08
HGB 8.9
HCT 25.2
platelet 35
segs .1
monos .8
Isabella had a fun day this morning. She took a wagon ride with the activities director Tommi. Bella calls Tommi the "Horse" because Tommi takes her for piggy back rides up and down the hall.
We were wishing her counts would do something so that we could go home, but they are not moving! We will do the neutraphil dance tonight and maybe by the morning we will see some improvement!
Isabella had a rough afternoon. Her molar is coming in and it causes pain and bleeding. We should get red blood cells tomorrow and possible platelets. She was so mad this afternoon that we had to give her benedryl to calm her down.
This evening is much calmer. She woke up and said, "Sorry mommy" and gave me a kiss. That does the trick!! She had a bath and we did her broviac care. She wants to go to playhousedisney.com now so I have to hurry!
Unfortunately, Steve has to stay at home. He caught a cold from somewhere and now is going to have to be at home for a few days. I hope I don't get it!!!!
Please pray for Bella and all of her friends. Keep Jake high on your prayer list, for he has an important scan coming up.
Thanks!! Good night!
Saturday, April 13, 2002 at 09:02 PM (CDT)
Bella's labs for today:
WBC 2.6
RBC 3.36
HGB 9.7
HCT 27.7
platelet 58
segs .3
monos .2
Isabella stayed up until 2 a.m. this morning and slept until 11:00. We need to fix this!!! My high school friend Becci Blaesing and her family stopped by this morning. They were down for Sarah's wedding. It was nice to have visitors. Cam watched Isabella this afternoon while Steve and I had lunch. We talked about our moving plans to California. Tami and her husband Jeff are visiting tomorrow and bringing us dinner...Yummy! We are so spoiled! I am probably going to forget how to cook by the time we actually get to go home.
We have linked some of Isabella's friends to our website down below, so please visit and pray for these special kids!
Please pray for Jake and his family. They have their scans on monday to make sure Jake's cancer is gone.
As Bella says, "Adios!"
Friday, April 12, 2002 at 04:13 PM (CDT)
Today's counts:
WBC 12.4
HGB 9.4
HCT 27.0
PLT 68
segs 0.5%
ANC 12
monos 0.1%
eos 0.1%
basos 0.1%
As you know, Bella had a CT of her head yesterday, and slept all day because of sedation medication. We thought we were going to be up all night, but fortunately she fell back to sleep around midnight. She finally woke up today at about 11am!! Now we're trying to get her to take a nap, but she just has too much energy!!
She's already gone for a walk around the hospital and played with all her toys.
That's all for now. Take care.
Thursday, April 11, 2002 at 11:41 PM (CDT)
Isabella's labs for today:
WBC 2.2
RBC 3.45
HGB 9.9
HCT 28.8
platelet 24
segs .5
eos .1
Yeah! Bella's CT scan went great. No complications to worry about. She was groggy all day and slept most of the day. That is why we are going to be up most of the night! Poor Me....Steve will end up falling asleep.
We took Bella for another walk this afternoon. The nebutal she had for sedation made here have an unsteady gate so she didn't do much walking but it is very nice to get out! Hopefully, her counts will start coming up this week and we will get to go home.
Bella received platelets today and continued her daily G-CSF to help her counts recover faster. She is still on a couple of antibiotics (gentamycin, ceftazadime, and fluconazole).
Dr. Giller stopped by to ask us a few questions about Isabella's history. They will tentatively plan for transplant in about four weeks. The sooner the better so that her cancer doesn't come back.
Thank you for all of your prayers!
Steve, Ceyonne and Bella
Wednesday, April 10, 2002 at 04:51 PM (CDT)
Isabella's labs for today:
WBC 2.5
RBC 3.37
HGB 9.6
HCT 28.2
platelet 39
segs .1
monos .1
basos .1
Isabella had her spinal tap today. The procedure went well except for the sample they received. The sample had some red blood cells in it which means she is probably bleeding somewhere. For the past couple of days I had told the doctor that she has been complaining of headaches and she would cover the left side of her head. They were already considering doing a CT scan of her head but they are for sure going to do one now with the results of the spinal. The blood in the spinal is old blood so they know it was not from the spinal puncture. Hopefully, it is just from the intensive chemotherapy and not something serious.
Bella was sad to see her grandma go. But she can't wait for grandma, grandpa, Rachel and Jake to come visit. She looks forward to seeing her grandma Diane and grandpa Ray in two weeks! She still calls any vacuum she sees, "Diane's vacuum!" Grandma Diane did a lot of vacuuming while visiting.
We hope to give good news tomorrow with the CT results. Please pray for Bella.
Ceyonne, Steve and Bella
Wednesday, April 10, 2002 at 12:28 AM (CDT)
Isabella's labs 4/8
WBC 2.4
RBC 3.88
HGB 11.2
HCT 33
platelet 70
segs .5
basos .1
Today:
WBC 2.3
RBC 3.67
HGB 10.6
HCT 31.2
platelet 52
segs .3
monos .1
eos .1
basos .1
Isabella has had a lot of fun with her grandma Chris! They have read many books and Isabella can now recite "The Three Little Pigs." Isabella scared her grandma last night with a break in her catheter. The cap came off and she started to leak blood all over the place. Grandma said a few bad words and Bella repeated them. Isabella would yell, "Bloooood, Blooood, EWWWWWW, Blood!" I immediately clamped the line and turned off the pump and the nurse came in with a saline flush and new tubes.
Today, we went for another walk outside. It was over 70 degrees today! Bella enjoyed following the ants and feeding the squirrel her smarties (candy). Cam and Alan stopped by to say hi. "Hantie" (auntie) and Bella made a picture frame out of sequence while Grandma and I made her a sock puppet. Bella, after a long day, fell asleep holding daddy singing, "Jingle Bells!" Grandma and I went shopping after Isabella fell asleep.
It is 12:10a.m. and Bella is still up and watching Teletubbies. Isabella will have a spinal tap in the morning around 8:15. This includes the intrathecal chemo. We should have the preliminary results back in the afternoon.
Keep Bella in your prayers!
Sunday, April 07, 2002 at 03:34 PM (CDT)
Isabella's labs for today:
WBC 2.5
RBC 4.17
HGB 12.3
HCT 36
Platelet 94
segs .2
monos 1
eos .2
Isabella is finally off isolation. We went outside and walked around the hospital. She does a very good job wearing her hepa mask. She has to wear the mask when she goes outside or around public places. She will continue to wear a mask until apx. 6 months after transplant. She enjoyed being out in the sunshine, walking, jumping, and spinning around like a normal toddler. We hope to take a walk at least once a day!
Isabella sends her kisses to everyone!
Bella, Steve, Ceyonne and Grammy.
Saturday, April 06, 2002 at 10:38 AM (CST)
Yesterday's counts:
WBC 2.0
Hct 33
Hgb 11.4
Plt 130
segs 0.5%
ANC 10
Today's counts:
WBC 2.9
Hct 36
Hgb 12.3
Plt 124
segs 0.2%
ANC 5.8
We met with the bone marrow transplant (BMT) doctor yesterday. He feels that Isabella should proceed with transplant, total body irradiation, and cranial boost (more irradiation). He does realize Bella's situation is unique, and will be talking with other doctors from across the country. He also said that transplant would likely start about early May.
Grandma Chris arrived yesterday. This, of course, got Isabella VERY excited. She played, and sang, and read books. In fact, she didn't fall asleep until the wee hours of the morning. This, of course, got US very tired. It's 10 am and we're just waking up.
Thank you for all your support. Please keep praying and hoping for the best.
Thursday, April 04, 2002 at 10:24 PM (CST)
Today's counts:
WBC 2.5
HGB 12.4
Hct 36.1
Plt 19
segs 0.8%
ANC 20
Isabella had a red blood cell transfusion yesterday. Today she had a platelet transfusion. She had a pretty big butt rash this last week, too, but it has gotten a lot better with topical anti-fungal and anti-bacterial cream.
We've been doing a lot of talking (and stressing) about the upcomming months. The doctors have been discussing the possibility of total body irradiation with an extra boost of radiation to the head, in addition to transplant. This makes us worried/scared, sad, disappointed, and just about anything else. Radiation can have many short and long term side effects, including a decrease in cognitive function, short term memory function, and attention span.
Although they are currently treating Isabella as though she has relapsed (because they found evidence of AML in her spinal fluid a couple weeks ago), there were not enough cancer cells to meet the standard criteria for "relapse." In fact, some cancer centers may not have even found the cancer cells in the spinal fluid since not all centers have the sophisticated testing available here. Because of this, and the fact that she has responded well with a few extra doses of intrathecal chemo (ARA-C), the doctor says that there may be options other than cranial irradiation.
We will be meeting with a transplant doctor tomorrow, to discuss in detail these particular options. We have been told, though, that there may not be any right answer since there have been few people in Isabella's position (ie, does not meet standard criteria for relapse, but sophisticated testing found evidence of cancer in her CNS after initiation of chemo). We are essentially walking down an unknown path with Isabella.
On the flip side, Isabella is watching "The Never Ending Story," which in my opinion is pretty true to its name (borrrring). But Isabella likes it, and calls the movie "the scary" because of the (overly) dramatic scenes, and the wolf.
Isabella will be all smiles tomorrow. Grandma Chris is coming tomorrow, and will be here for about 5 days. Good night.
Wednesday, April 03, 2002 at 05:31 PM (CST)
Isabella's labs for today
WBC 2.3
RBC 2.7
HGB 8.1
HCT 23.3
platelet 38
segs .6
eos .1
basos .1
Isabella had her spinal tap today and it went very well. Dr. Albano said that by morphology it looked good and it will be sent off for further tests. With the spinal tap, Isabella received intrathecal ARA-C chemotherapy. We still need to speak with Dr. Gillar, the transplant Dr. We have many questions that still need to be answered. Dr. Albano mentioned that Isabella would probably have to undergo TBI in addition to cranial radiation. This is where they give radiation to the whole body. This kills all of her cells so that her cord blood will grow and not her own cells. We want her donor to 100% take over the marrow. We will let everyone know what Dr. Gillar says when we get the chance to talk to him.
Isabella had some family from California here today. Larry, Elma and Elisa came down from Moorpark. (45 min from Oxnard) When we move to California we now know that we will have an excellent babysiter...Elisa! We had lunch and visited about Isabella and their daughter Elisa who had ALL Leukemia in 1997. and they brought Isabella the cutest Minnie Mouse dress, shoes and ears. Thank you very much! The books were very thoughtful too!!
Isabella just received some PRBC (Red Blood Cells) and is taking a nap. Steve is also taking a nap...I think I better join in and get some rest too! Thank you for all of your support, and keep Praying for Isabella and all of her little friends here at Children's.
Monday, April 01, 2002 at 03:32 PM (CST)
Isabella's labs for today:
WBC 2.2
RBC 3.34
HGB 9.9
HCT 28.5
platelet 76
segs .6
lymphs 99.3
basos .1
We finally got to talk to Dr. Albano. She said that she is still hopeful for bella's recovery and that we will meet with Dr. Gillar (sp?) the transplant Dr. sometime soon. She also said that she thinks Isabella should have cranial radiation after transplant. This would increase her chances of survival. There are two main side effects of the radiation. One, she might need hormone replacements later on in life and two, she may be a little slow at math. But, as long as she is a happy girl we can work on both. She is so smart now it is hard to think she may struggle with math. She is also very artistic so we will emphasize her abilities in that area. We will take one day at a time. First, focusing on getting through bone marrow transplant. Dr. Albano said her survival statistics remain the same even with the relapse so that is good. We can only pray....and Yes your prayers are helping Bella!!
Sunday, March 31, 2002 at 05:40 PM (CST)
Happy Easter!
Isabella's counts for today:
WBC 1.9
RBC 3.35
HGB 10
HCT 28.4
platelet 95
segs .6
lymphs 99.2
monos .1
basos .1
Isabella is doing well. They took her off tobramycin, vancomycin, and ceftaz and started her on gentamycin. Hopefully this will make her stomach feel better not being on so many anitbiotics. If her fever spikes again she will have to go back on them. For breakfast Isabella had ice cream and banana. Lunch incuded green beans (which she liked taking the seeds out and eating them) carrots, and chicken strips. Cam and Alan prepared us a delicious lunch. All of the nurses were jealous of our yummy lunch! Isabella also liked Uncle Al's asparagus. We hope we will be out of here soon so we can enjoy our time at home before transplant. The doctors say that her counts should recover a little bit faster due to her healthy bone marrow (before, she had 90% blasts in her marrow). Bella is napping now and hopefully her body is producing cells in her marrow while she sleeps! Hope everyone has a lovely Easter. Pray for Bella.
Bella's friend Jacob's website is www.caringbridge.com/co/jacobtylercohen/
Love,
Steve, Ceyonne, and Bella
Saturday, March 30, 2002 at 10:29 PM (CST)
Isabella's labs for today:
WBC 1.8
RBC 3.7
HGB 10.9
HCT 31.7
platelets 119
segs .7
lymphs 99
Hello everyone, Happy Easter! Isabella is doing well despite her bottom rash. She received RBC and platelets yesterday so that is why her counts look so good. She is reading her Mickey Mouse book and eating a banana. She started another antibiotic called Tobramycin (they have a better drug for the bug but they can't use it because she is pre-transplant and that drug is a "big gun" for resistant bugs) for her bacteria called citrobacter freundii in her blood and an antifungal medicine called fluconazole. Despite not eating as much as usual, she weighs 11.7 (12.0kg normally). Isabella and Daddy played this afternoon while I went to the store to pick up Isabella's favorite snacks (popcorn, shredded cheese, assorted chocolates, ice cream, and goldfish). Hopefully she will indulge in the most highly caloric foods! Well, we have now been here for a week and we are not going crazy....so that is good. Cam and Alan are coming tomorrow with Easter dinner. Prime rib, double stuffed potatoes, steamed asparagus, and double stuffed eggs are on the menu. We are very lucky to have them near. Isabella liked her "B" book from Zach and she loves her Easter books from Julia. In fact, she is reading her Easter book now! Every once in a while, for some odd reason, she will start saying, "Bruce." She even named one of her cats "Bruce." So, Uncle Bruce, I think she is fond of you. Grandma Chris and Grandpa Alan can not come down for Easter because Grandma "Cwis" has a cold. Becca, Isabella called one of the volunteers, "Becca." She sort of looked like you and I think she wants you to come visit. We plan on staying up until 1-2 a.m. Isabella's sleep pattern is all messed up. We sleep until 10:00 a.m. and she naps from 4-7 in the afternoon. We have to go because Isabella wants to go to teletubbies.com!
Please pray for Isabella and also her new friends Jake(21 months old)and Cindy (3 years old). Jake is post transplant and Cindy is getting her transplant. Cindy's website is www.caringbridge.com/co/cindy and Jake's dad is emailing me theirs. Good Night!
Thursday, March 28, 2002 at 12:28 AM (CST)
It was Ceyonne's birthday yesterday. She turned 23 years old. She says thanks for all the wonderful gifts. The best present was Isabella's spinal tap. There was one abnormal cell that may or may not be cancer (further testing needed), but the main point is that there were less cells than a few weeks ago. Hopefully this means that her cancer is still responding to the chemotherapy. The bone marrow results are not back yet.
We're still waiting to talk to the bone marrow transplant doctors to figure out future plans. As of now, she is scheduled to have another spinal tap with more intrathecal chemotherapy next week. Other good news is that she finshed her IV chemo tonight!!
Her aunt Camala visited this morning. This made her very excited and happy. She got several pretty dresses wrapped in Teletubbie wrapping paper!
Isabella was tired all day long. She napped on and off, sleeping about 4hrs total. Unfortunately she's developed a fever (39.1C). She also vomited when the doctor pressed on her stomach. POOR BELLA!! They gave her Tylenol (for fever) and ativan (for nausea). She already gets zofran (for nausea) with the chemotherapy. Prophylactic antibiotics (vancomycin and ceftazidime) were to be started tomorrow morning, but they'll start tonight because of the fever.
Right now she's relaxing in bed with momie, counting to 10 in spanish!
She says "goodnight!" Say prayers for Bella!
Monday, March 25, 2002 at 05:43 PM (CST)
Isabella's labs for today:
WBC .9
RBC 2.55
HGB 7.9
HCT 22.2
platelet 42
segs 2.3
lymphs 96.3
monos .4
eos .9
basos .1
Isabella is doing well with the chemo. She will have her last bag hung tonight at 8:30 and will finish tomorrow at 8:30 p.m. (ARAC, cytarabine, etopiside, vp16, 6tg) She has a spinal and bone marrow biopsy tomorrow morning so hopefully they will all be negative for cancer. We won't know the results for two days or so. Isabella's Dr. is on vacation so we haven't got many answers to our questions. It is not a good sign that her cancer came back so soon. It is not good if it comes back before one year and Isabella's came back while on treatment. They think it might be resistant leukemia. That is why she will probably have to go to transplant. We have not met with the transplant doctors yet. Isabella is eating well now that her vomiting has gone away. Now we just have to wait until her counts recover which will probably be 4-6 weeks. Please pray for Isabella.
Thursday, March 21, 2002 at 06:50 PM (CST)
Steve and I are sorry we don't have good news to share with everyone. We found out yesterday from Dr. Albano that Isabella has relapsed in her CNS. She is now off the study and will have more intensive therapy. She is now considering doing a bone marrow transplant. We will meet with the transplant doctors this next admission and they will let us know if she is a good candiate for transplant.
The little girl in the PICU did not make it so if you all could say a prayer for their family and friends.
We need your prayers more than ever!
love, Steve, Ceyonne and Bella
Saturday, March 16, 2002 at 04:41 PM (CST)
Hi,
Isabella gets to go home tomorrow around 7 p.m.! We get to stay at home until saturday and then come in for a month or so. Isabella has had a good day except for when we tried to give her colace she got sick. Steve, on the otherhand, had a bad day. His wallet was stolen from our room. We were either in the hall or in the playroom when it happened. The nurse told us that this has been a problem in the last month or so and my response was that they should inform families so that we are aware of the situation and can keep a better look out and make sure our things are stashed away. So we cancelled all of our cards and Steve will go down to get his new license on monday.
We would like for everyone to say a prayer for a little girl down in the PICU. She has the same cancer as Isabella (AML M5)and is only one month older. She is not doing very well and everyone is very worried about her. We can't wait until she is healthy enough to come upstairs and receive chemo so she can get better. Then Isabella will have a playmate the same age and the same illness as her!
Hope all is well with everyone!
Steve, Ceyonne and Bella
(dx w/ AML M5 1/02 on standard treatment)
Friday, March 15, 2002 at 11:35 AM (CST)
Isabella is doing pretty well with her chemotherapy. She has been a little tired but in good spirits. She has a continuous chemotherapy drip running until Monday and she takes 8 oral medicines each day. What a brave girl!!! Overall, our stay has been pretty good. We had a set back two nights ago with a clotted catheter. It took about three hours to get it to work again. They flushed it with a solution called TPA. Dr. Albano told us that her spianl tap from tuesday had some blasts in it. She sent it for further tests to see if they were the "good" or the "bad" kind of blasts. She called the chairman for the AML study Isabella is in and told her about Bella's spinal and she didn't seem to be too concerned. Even if it is the cancer floating around in the spinal fluid, they are going to continue the same therapy and are pretty sure that it will kill the cancer cells. We won't have any lab draws until the end of the chemotherapy which will be on monday. We
will keep everyone posted if anything new comes up.
Wednesday, March 13, 2002 at 04:41 PM (CST)
Hello,
Isabella's labs for today:
WBC 3.7
RBC 3.56
HGB 10.6
HCT 31.1
platelet 374
Segs 45
Bands 2
Lymphs 31
monos 19
eos 3
As some of you already know we have been admitted to "Hotel Children's." We are in room 540. Isabella had intrathecal chemo this morning and will start her cocktail iv chemo sometime this afternoon. We will probably be here for about five or so days and then go home for a couple of days. She will then have to come back for the long run (aprox. 1 month).
The Colorado Buffs football team just stopped by to wish Isabella well. They are pretty Big compared to little Bella.
She is just hanging out eating cotton candy. Not much else is going on. Just passing the time away.
Tuesday, March 12, 2002 at 10:40 PM (CST)
Isabella went to the doctor's today. She was scheduled to have a bone marrow biopsy if her ANC hadn't reached 1000. Fortunately, it did!! Now her marrow is considered healthy enough to endure another round of chemotherapy. She's scheduled to be admitted tomorrow to start chemo, including intrathecal chemo (in the spinal fluid).
You may remember she is enrolled in a clinical trial, comparing two different accepted therapies for AML. We have read many articles, and talked to different doctors around the country, and have decided to keep her in the study. Today, she was randomized to the standard, or typical, therapy for AML. Her drugs will be exactly what she got the first time. We'll be in the hospital about 5 days, go home for four, then return for about another month. Again, most of the time will be spent waiting for her bone marrow to recover.
WBC 4.6
SEGS 47%, ANC 1,564
HGB 11.4
HCT 33.2
PLT 410
Hope everyone out there is doing well. As Bella would say, "Adios!"
Sunday, March 10, 2002 at 10:40 PM (CST)
Say Cheese.....
Isabella had her Easter pictures taken today. She was as moody as ever. We finally got a great shot after about twenty tries. Isabella gave dad a workout tonight by making him swing her up and down for about fifteen minutes. Boy, does she love her daddy. She is playing with her Dipsy puzzle and showing Grandma her toys right now. She also gave her Grandma a work out. She insisted on having Grandma run with her all over the house screaming, "Faster, Faster."
We would like to congatulate little Joseph and his parents Darcy and Brent Harle for baby Joseph was babtized today. We would have been there but Isabella decided to nap from 1:00-4:00. She was a very tired girl. I am sure she will be up all night.
Hopefully, we will make it to the zoo tomorrow. She loves zebras and cotton candy.
Good night and thanks for all the prayers.
We sure need them!
Love, Steve, Ceyonne and Bella
Saturday, March 09, 2002 at 11:20 PM (CST)
Hi everybody,
Grandma Chris came down to visit Isabella for a while. Isabella was very happy to see her "gwama kwis." We went out to dinner and have been at home watching the "Dinosaur" movie. Isabella loves dinosaurs. She is such a big girl now. We have to clean her broviac every day and she is such a trooper. She goes and gets the tape and lays down on the floor yelling for papa, "Clean Broviac, tape on!" Although today when she had her site cleaned she was so excited that she got the tape out and came up to me and said "Tape mommy" and threw it in my cup of tea. Bella hates baths. She repeatedly says, "No, Bath, No Bath" while shaking her head no. With her site being slightly red we haven't given her a bath anyway. Isabella can't wait to see her aunt Cam and uncle Al. They are finally well and are going to see her this weekend.
We want to thank everyone for leaving us wonderful notes in our guestbook. We read them everyday and they bring a smile to our face. Thanks for all the prayers! Keep praying...!!
Friday, March 08, 2002 at 06:30 PM (CST)
Isabella went to clincic today. Her broviac site was a little red and so the doctors prescribed her some antibiotics. When we were in clinic I saw a familiar face. I found out that one of my classmates from college was there at clinic with her daughter who also has leukemia. Her daughter Mikala has A.L.L.
They have been in and out of the hospital for nearly two years. It is definitely a small world.
Isabella received a gift package from Kelli in Walla Walla, WA. She loved all of the wonderful teletubbies, books, puzzles, games, videos, teletubby light projector, and interactive tinky winky! She carries tinky winky everywhere she goes. She doesn't want me to throw out the box the gifts came in because it has tubby stickers on it. Thank you very much Kelli.
Thanks for all your prayers and support!!
Love, Steve, Ceyonne and Bella
Thursday, March 07, 2002 at 06:08 PM (CST)
Isabella had a fun day today. She spent the morning at her friend Austin's. They played very well together, they even had their very first kiss!! Isabella enjoyed pushing baby Meredith in her swing until she decided that she wanted to swing!
Isabella now sings, "Jesus Loves Me." She sings all of the words correctly except instead of singing, "for the bible tells me so" she sings "for the papa tells me so." It is very cute!
Steve and I have decided to keep her in the clinical trial. We will soon be radomized to either the standard therapy or the new therapy. We can only hope for the best!!
Wednesday, March 06, 2002 at 12:56 PM (CST)
Isabella had clinic today and her labs are:
WBC 3.1
RBC 3.77
HGB 11.1
HCT 32
MCV 85.7
MCH 29.6
MCHC 34.6
RDW 19.2
Platelets 397
segs 21
bands 1
lymphs 60
monos 12
eos 1
She is doing well, but her anc is still not 1000. It is 682. They are delaying her admission again. Tuesday she will go in for another biopsy and aspirate to make sure everything is okay. She gets to spend another weekend at home. Iabella also gained some weight, she now weighs 12.1 kg! Continue your prayers!
Sunday, March 03, 2002 at 06:55 PM (CST)
Very Special Candy
One day,
I will make a bag of
Very Special Candy.
The candy will come in
All different colors,
Colors like you see in
Good Ordinary Candy.
But...
The flavors will be
So different and
So special and
So wonderul.
There will be little
Blue candies
That taste like sky.
And the little
Green and brown candies
Will taste like grass and trees.
The orange ones
Will taste like butterfly,
The yellow ones
Like flowers and sunshine,
And the white ones
Like clouds in Heaven
And then,
I will make a very, very
Special piece of candy,
That is all different colors
And that glows like a halo.
And that will be the one
That tastes like
Rainbow and Angels.
-Mattie J.T. Stepanek
Isabella had a great day today. We all went to Ocean Journey Denver Aquarium. She loved the sharks, the waterfalls, and the divers that were cleaning the tank. We had to pull her away from the divers otherwise she would have been there all day. When she saw the Tigers, she started to growl "Grrrrrrr!" And the fish provided endless entertainment. On the way back, she sang the Teletubies theme song all on her own.
Isabella has clinic on Wednesday, and they are planning to admit her on Friday. Thanks for all of your prayers and support!!
Saturday, March 02, 2002 at 06:14 PM (CST)
Hello everyone!
Isabella had a fun and excitingly uneventful day today. She entertained herself for 3hrs this morning. Mom was able to do whatever she wanted, even in separate rooms!! Isabella picked up grandpa Ray at the airport today. On the way, she saw an airplane and said "Gwanpa!!"
Her new favorite food is peanut/chocolate eggs. She eats them constantly, demanding at random "chocowat!"
She went to the doctor's yesterday. Her admission to the hospital has been postponed again. They want her bone marrow to recover enough (i.e., ANC>1000) before they hit it with more chemotherapy. The new admit date is tentatively scheduled for next Friday (3/8).
Other good news is that the cytogenetic studies of her bone marrow are free of cancer DNA.
The standard studies use special stains to look for cancer cells under the microscope. If the standard studies are negative, it is called remission (Isabella is currently in remission). The cytogenetic studies are extra studies to look for DNA evidence of cancer that cannot be seen under a microscope.
Having these studies be negative is an extra HUGE bonus. Most kids with AML will be in remission but have positive cytogenetics (ie, cancer cells remain).
Right now there's snow on the ground, its 20 degrees, and were going out and to feed Bella pastries, sourcream/potato, and very succulent 16oz prime rib. Okay, maybe we'll have some, too!
Keep saying those VERY EFFECTIVE prayers!
Sunday, February 24, 2002 at 09:24 PM (CST)
We just got back from Casa Bonita where Isabella had a ball with her friends Austin, Grant and Jack! She enjoyed a big slice of pink cake with mommy. The mariachi band played "You are my Sunshine" for her and they let her keep two maracas. I have to hurry up and write this because Isabella wants to go to teletubbies.com. She keeps saying tubbies.com, tubbies.com.
We are hopeful that we will get to have a "Cured party" in five years.
Last night Isabella said the complete alphabet. Usually, she gets stuck on LMNOP. She is also learning spanish. She is starting to speak a little spanglish. She mixes up Blue and Azul quite often. Isabella has clinic tomorrow at 10:00, so we will keep you all posted. Thank you for all of your prayers and support.
Friday February 22, 2002 5:04 PM CST
Here's some labs from today:
WBC 4.2
HGB 10.8
HCT 31.8
PLT 169
Absolute neutrophil count (ANC) 714
The drop in ANC is because she is no longer on gCSF. She is not at more risk for infection right now than the average person, because she has plenty of infection fighting cells (i.e. not neutropenic).
Friday February 22, 2002 2:33 PM CST
Remission, Remission, Remission!!!!
Good news for Isabella. We got word yesterday that Isabella is now in remission. To celebrate Isabella went to Beauty and the Beast at the Imax theatre yesterday. She also will be celebrating sunday at Casa Bonita with all of her friends. The doctors postponed her admission into the hospital until next Friday due to her viral infection. She did very well at clinic today. They gave her more iv fluids because she has lost so much from her infection. Other than that she is her happy self.
Thanks for all of your prayers. (keep praying)
Thank you, Jack, for your birthday wish for Isabella to get better. That is the best birthday wish anyone could ask for. I think it is working!!!
Tuesday February 19, 2002 4:44 PM CST
Hi! Just want to say congratulations to our good friends Dan and Karen. Karen gave birth to a healthy baby girl on Valentine's Day. Meredith weighed in at 5 lbs and 12 oz. She is very cute. Austin is now a big brother!!!
Isabella went to clinic today and her labs are:
WBC 7.4
RBC 3.88
HGB 11.4
HCT 31.5
PLT 88
Seg 1
Bands 6
Isabella's ANC is now 3034!!! A huge difference from the 0 count a week ago. Isabella can now go outside without a mask and can also go to the IMAX to watch Beauty and the Beast tomorrow! She also had a bone marrow biopsy. The results should be back by Monday. Hopefully she will be in remission!! The doctor said her vomiting was from a viral bug called "toro." She said a few kids in the hospital also have it and thought it was probably from the nurses not washing their hands every time they came into Isabella's room. She was going to go talk to the charge nurse. Isabella will have her next check up on Friday. We will probably be admitted again to the hospital on Monday to start her "induction" round of chemotherapy. Steve and I will have to decide if Bella will stay in the clinical study or take standard treatment. Both are accepted treatments for AML. They are doing the study to see which treatment is better. We just want Isabella to be cured!!
Isabella continues to amaze us each and every day. Her vocabulary is incredible. She loves her "Docta Abano" Dr. Albano. When she awoke from her surgery today she had to name everything she saw, "Coke, Crackers, Broviac (her central line), Papa, Steve, Mommy, Ceyonne, Dondi (her nurse), and every color she saw in the room. She is so cute. She also is very polite. She knows how to use Please, Thank You, Excuse Me, and Your Welcome. Steve cannot resist her, "Please papa" followed by "Thank you, papa." I think she already has him wrapped around her little finger. Isabella blows all of you kisses.
Please pray for Isabella's biopsy to come back free of cancer. Thank you.
Sunday February 17, 2002 2:03 PM CST
Well, we took a couple day hiatus from our journal, but for a good reason:
WE CAME HOME FROM THE HOSPITAL!!!
Isabella was discharged Friday the 15th. Her counts were on the rise. Unfortunately, we ended up back in the ER friday night. Bella hadn't eaten anything since that afternoon, and she was having some pain sitting is certain positions, nor did she want to walk. Then she vomited 3 times. Thats whent the doc told us to bring her into the ER. It was about 12:30am Sat.
They examined her, checked some blood, and gave her IV fluids. Other than that, she slept the whole time. About 5am, they said everything seemed okay, and that we could go home. They thought the pain was from the G-CSF, which can cause bone pain. They didn't know why she was vomiting, but said to give her pedialyte and just watch her.
Saturday she vomited once, but otherwise was fine, walking, sitting and everything.
She vomited again once last night, but ate a reasonable breakfast today.
Isabella's vocabulary and language skills are growing every day. She's begun mimicking everything we say. Anything we ask her to say, she'll say it, or at least try. Friday in the hospital, she took two play-do teletubies, made them kiss eachother, and said "love you." Another day, Ceyonne was singing (out of tune) to a song on the radio, and Isabella said "silly mommie." Unfortunately, she also know's phrases like "it's ok" and "all done" because of all the hospital staff poking and proding at her.
Right now she's taking a nap, and afterward we'll go to the park.
We'll have to post the labs from friday later, we can't seem to find them right now.
Bye for now. Pray for Bella!
Thursday February 14, 2002 10:12 PM CST
Isabella has had a little bit of a rough day today. Last night she had a lot of pain, we think from the sore on her bottom. She was given some morphine, but then she had nausea, requiring benadryl and ativan, and it still hasn't completely gone away. She did have her good moments and played either in her room or the playroom.
The doctors are encouraged that her bone marrow is on the verge of a come back. In addition to the absolute neutrophil count, they also look at the absolute macrophage (or monocyte) count, which usually starts to increase before the neutrophils. Bella's have been on the rise the past few days.
Labs today:
WBC 1.8 (5-13)
segs 4.4% (18-62)
monos 4.6% (0-10), yesterday 2.8% with WBC 3.2, and 1.2% on 2/12 with WBC 2.3
HGB 9.9 (9.5-14)
HCT 28 (30-41)
PLT 67 (150-500)
Her repeat bone marrow transplant has been moved to next Tuesday (no particular reason except for scheduling purposes). If it is without cancer cells, then Isabella will be in remission.
Isabella is going to sleep now. We will too. Continue all those wonderful prayers.
Wednesday February 13, 2002 10:18 PM CST
Hello everyone.
The doctors tell us everyday that they're hopeful Isabella's counts are slowly on the rise. We are too, but we want to see results!!!
She had a bath today. She screamed in protest the whole time. She's happy and relaxed now, watching Grease. She's into musicals (grease, annie, mary poppins), and likes to sing along.
Here are her counts:
WBC 3.2 (5-13)
segs 0.3% (18-62)
HGB 9.9 (9.5-14)
HCT 28 (30-41)
PLT 67
Good night. Keep praying.
Tuesday February 12, 2002 8:57 PM CST
Well, not much more to add today. Isabella still has her good moments, and her bad moments. We think she might be teething again. One of her incisors looks like it's coming out, and she's biting just about anything. She may also be getting a little of cabin fever. The new attending doc doesn't want any patients out of their rooms unless they wear a mask. Of course the smallest mask available covers Isabella's entire face, so she refuses to wear it. We haven't been out of the room much since.
Her counts were low enough today to warrant both platelet and red blood cell transfusions.
WBC 2.3 (5-13)
HGB 7.6 (9.5-14)
HCT 21.6 (30-41)
PLT 13 (150-500)
She also received pentamadine. It's an antibotic to prevent a specific type of lung infection, Pneumocystis carynii. She's actually allergic to this medicine (she had a rash and hives the first time she got it a month ago). They prevented this from happening again by giving her benadryl first.
Bye for now. Keep Isabella in your prayers.
Monday February 11, 2002 9:38 PM CST
Hello everyone.
We'll, Isabella had a mostly uneventful day today. She was really upset around noon, we think it was her teeth. We loaded her up with Tylenol and Benadryl and she went right to sleep. She's been as cheerful as ever since she woke up.
The only bummer is that her neutrophil count went back down:
WBC 2.6 (5-13)
segs 0.4%
HCT 22.5
PLT 21
Bella had a reunion with her long time boyfriend, Austin, today. He's just three weeks older than Isabella. Austin is expecting a baby sister, due this month.
Good night, take care, and say your prayers for Bella!!
Sunday February 10, 2002 9:27 PM CST
It's 8:30pm, and Isabella is trying to go to sleep. She didn't have a nap today, so she's kind of cranky.
The bacteria in her blood has been identified and characterized. It's called Enterobacter cloacae. It normally grows in the gut, and they think it got into her blood from the sore on her bottom. It is resistant to the antibiotics she had been on, but is killed by the new antibiotic (tobramycin) that was started after her fevers began. She has not had any fevers for over 24 hours!!
It seems the recent nausea was caused by the addition and increased frequency of antibiotics after her fevers began. Since they have identified the bacteria, they cut back on her antibiotics, and her nausea has gone away.
And there's more good news: it looks like her neutrophil count may be improving.
WBC 1.6 (5-13)
segs = neutrophils 10% (18-62)
HGB 11.2 (9.5-14)
HCT 31.3 (30-41)
PLT 23 (150-500)
Neutrophils are very important in fighting infections, especially bacteria and fungus. An absolute neutrophil count (ANC) of less than 500 is called neutropenia, and when counts are less than 250, then a person is at very high risk for infection. The ANC is calculated by multiplying the %segs by the WBC (in thousands).
Isabella's ANC has been essentially zero for nearly a month. Today it is:
ANC = 1,600 (wbc) x .1 (segs) = 160
This is partly artificial because the growth is being stimulated by a hormone called G-CSF (also called neupogen), which she gets daily. If she were to stop it now, her counts would fall back down. The drug will be continued until the doctors think her bone marrow can stimulate itself and normalize blood counts on its own.
Don't forget, Isabella loves all those prayers!!!
Saturday February 9, 2002 3:07 PM CST
Well, Isabella is VERY cranky today. Maybe because she slept nearly 20hrs straight between yesterday and today.
Because she was having persistent fevers, and bacteria grew from her blood within 24hrs, she had a "pan man scan" - a cat scan of her head, chest, belly and pelvis. They were looking for any place the bacteria may be hiding out. Fortunately, everything was normal.
The bacteria is a gram negative rod, but the exact species has yet to be identified. A new antibiotic was added yesterday, and she really hasn't had any fevers today.
Her butt sore seems better. We're treating the pain with Tylenol instead of morphine or codeine, which gave her nausea and vomiting.
Her labs remain essentially unchanged:
WBC 1.6 (5-13)
segs 0.1% (18-62)
HGB 8.8 (9.5-14)
HCT 24.7 (40-41)
PLT 34 (150-500) - up since she recieved platelets yesterday
Otherwise, she continues to do well!! Keep saying your prayers!!!!!!!
Friday February 8, 2002 11:29 AM CST
Isabella's Labs for today:
WBC 1.8
HGB 9.7
HCT 26.8
PLT 10
Seg 1.6
Isabella had fevers all night and vomitted her codeine. She now gets a small amount of morphine when needed instead of codeine. This morning they told us that she has gram-negative rods in her bloodstreem (infection). They will add additional antibiotics to her routine. She will also get platelets today.
Grandma Chris is playing with her right now and they are singing to Raffi.
Grandma Clara and Clayton are coming today to bring her some gifts and Aunt Cam and uncle Al will also be stopping by this evening. Continue your prayers!
Thursday February 7, 2002 10:17 PM CST
Isabella's labs haven't changed much:
WBC 1.7 (norm 5-13)
Segs (neutorphils) 1.0% (18-62)
HGB 10.5 (9.5-14)
HCT 30.0 (30-41)
PLT 26 (150-500)
Unfortunately, she developed her first fever today, the highest being 39.2C (103F). Fortunately, it is easily controlled with Tylenol. She has a new antibiotic added, and the frequency of her antifungal medicine is increased. Her butt sore is still there, but no worse. Despite all this, she's still happy, sings, and plays... even during the fever. What a trooper!!
Please continue your prayers.
Wednesday February 6, 2002 11:39 PM CST
Isabella hit a bump on the road. Her butt hurts. Today we found out she has a fissure (skin crack/butt sore) on her bottom. This makes it really painful for her when she goes #1, but especially when she goes #2. She'll be getting stronger pain medication to help with this. She also has a low grade fever (38.1 C). She is already on antibiotics.
On the up side, she finally went to sleep by 9:30 (instead of after midnight); this is probably because she finally took a nap at 2pm instead of 6pm.
Wednesday February 6, 2002 3:32 PM CST
Isabella was diagnosed 1/10/2002 with AML M5 leukemia. She presented with a cold that would not go away and an ear infection. On the morning of the tenth, Isabella couldn't walk very well. I thought it was a reaction from the antibiotics she was on for her ear infection. I took her to the pediatrition and was told that she had acute cerebellur ataxia. Something that some children get after a viral infection. They were not very concerned because a lot of children get this. She had told me if it gets worse to call. I went home and gave Isabella a nap and when she awoke she could not sit up or roll over. I immediately phoned Steve and we rushed her to Children's Hospital. After 2 hours in the emergency room they also thought it was the ataxia and that it should get better. Our friend Heather who works down in the ER did a CBC (Complete Blood Count) just to show us that it indeed was a viral infection. Thinking that we were about to go home, Heather delivered us with this catastrophic diagnosis. Our daughter has leukemia. Right then they rushed her in to surgery where she had a centeral line put in, a spinal tap, Bone Marrow Aspirate with intrathecal chemotherapy and a Bone Marrow Biopsy. They then admitted us up to the 5th floor, Oncology and Hematology. The doctors told us that we had caught Isabella's leukemia early. She presented with a WBC of 27,000 and with hydration it came down to 12,800. (5,000-13,000 the norm) She also had 27 blasts. The Spinal Fluid (CNS)was clear of cancer which makes her prognosis better. They told us that she has M5. Not the easiest to treat and not the hardest. Steve and I were in shock. She was just fine the day before. We are now finished with induction and waiting for recovery. The doctors will then decide if she goes to bone marrow transplant.
Isabella's labs for today:
WBC 2.1
RBC 3.82
HGB 10.9
platelet 44
segs .1
monos 1.4
Isabella is doing great today. Her grandma Chris, aunt Rachel, and cousin Jacob have come to visit. She was so happy to see them. She is getting ready for Valentines Day. She has made everyone valentines. Thank you grandma Diane and grandpa Ray for the care package. Isabella loves her valentines outfit and she likes her mommy's shirt too.
The doctors came in this morning and said it will just be a matter of time before her counts recover. Fortunately, Isabella hasn't had a fever, mouth sores, or diaper rashes. In fact, Isabella makes me change her diaper after every "little pee pee." She tells me "Change, mommy, change." Isabella has normally slept okay in the night. The past couple of nights she has been restless. The nurse told me it was probably bone pain due to her counts recovering and cells regrowing, "growing pains." The doctor agreed. They have not yet scheduled the next bone marrow biopsy. They plan to schedule it when her counts recover. This will determine if she is in remission. So please pray for Isabella. Isabella wishes she could blow everyone a kiss. We will keep you all updated!
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