Stem Cells

It has been a busy week. We have met so many wonderful friends and families here who are all going through the transplant process along with us. There will be four transplants performed in just one day on Charlotte's transplant day. The amount of patients that this hospital treats is unbelievable. Each child here has a rare form of some disease that no other hospital has seen. These children were all referred to CHOP. It looks like we came to the right place. (We knew this all along.) This hospital sees and treats the rarest cases of diseases from brain cancers to sickle cell transplant cases to bone marrow failure syndromes like Charlotte's. We are all each other's cheerleaders and celebrate every single small achievement together. Charlotte has tolerated the chemo conditioning process very well. During the entire process she was up, dancing, and playing all day. The doctors were quite shocked at how well she tolerated everything. (Even the scary thiotepa that can seep out if your skin and cause burns.) The days of a bone marrow transplant are numbered as such: You start by counting down Day -10 to Day 0. Her first chemo day was -10 and transplant day is 0. Then, the days count up after your transplant day as you recover: Day +1, Day +2, etc. The purpose of the chemotherapy is to wipe out all of Charlotte's blood cells in her bone marrow to make room for the donor's new healthy stem cells which will then become her healthy blood and bone marrow. A machine has taken all of our donor's bone marrow and filtered out the stem cells that generate all of the blood cells in our bone marrow. That is why a bone marrow transplant is also called a "stem cell transplant." From now on, Charlotte will have someone else's blood and DNA inside of her. The craziest part is her donor could be a male, so she'd have a man's DNA! They may have to make some new laws regarding where Charlotte can go to the bathroom. (Too soon?) Her blood type has also changed from her old type O+ to her donor's type which is B+. Charlotte's donor is referred to as an "unrelated" donor because she has no siblings that can be a possible match for her. Siblings are the only possible familial match for a bone marrow recipient. Charlotte's donor is an anonymous person who registered to be a bone marrow donor. The donor and recipient are not allowed to know any information about each other for one year. Then, after that year, we will hopefully be able to contact each other. On Thursday, April 28, 2016, Charlotte finally received the lifesaving stem cells that we have been praying for. This date will be known as her re-birthday, because the donor has given her a second chance at a new, healthy life. (As if having a daughter wasn't expensive enough, now she will celebrate two birthdays.) It was quite an emotional scene. The doctor placed in our hands, two syringes of cells that will save our daughter's life. The feeling is indescribable. The chaplain for the oncology floor wrote a beautiful blessing for Charlotte and blessed the cells. Then, the doctor pushed two large syringes of stem cells into Charlotte's tiny body through her line in her chest where she gets all of her medications. In true Charlotte form, we watched Elmo all the way through this life changing process. The entire process took about 15 minutes. Now, the hard part begins. The doctors have warned us that the effects of the chemo will now start to show up, and her body will react as she starts to make new bone marrow. The next few days will be full of medication to make her comfortable and let her sleep as her body is changing and healing. Cheers to a new, healthy life full of blood cells!

Transplant

It's game time! Time to put our game faces on! Charlotte's transplant process started this week. We were home for a few days before transplant, but now we are back, and it's go time. David's baseball team gave us a wonderful bag of goodies to help throughout the transplant. The best part is the baseball jersey for Charlotte, so that she can harness her inner Kenwood strength and spirit! She received her first two chemos Monday, Tuesday, and Wednesday. She has done great so far. No side effects just yet. She will continue one of the meds for Thursday and Friday also. Then comes the rough medication called Thiotepa. We will see how that goes, because it apparently is the hardest one. On Wednesday, Charlotte's ANC (her white blood cell count) dropped below 1000, so now everyone has to wear masks because she could catch germs very easily. It's been so nice to be close to so many of Laura's friends and family from home. She gets out for lunch dates often which helps because Charlotte is in isolation in her room 24/7. Adult conversation is also much appreciated. We are staying at the Ronald McDonald House while we are in Philly. It is so nice! They provide us with great meals and a really comfortable bed. What a blessing to have such a nice place to stay. Charlotte finally started speech therapy. They will help her learn to eat. So far, so good! She will also continue OT and PT to keep her strength up while she is here. Charlotte is just as ornery as ever so far. The nurses call her a little ninja!

See ya later, oxygen!

What a busy month! Charlotte has definitely transitioned into the toddler phase. She never sits still. Ever. What a blessing that she is so active. She crawls all over the place and is cruising along furniture. She is also starting to experiment with letting go and standing on her own which is scary. We use her push toy to practice walking now. It won't be long! We have been at the Children's Hospital of Philadelphia a lot this month. They performed all of her pre-transplant testing, and here is where we stand: 1) Her kidney reflux test showed that her kidneys are now functioning properly without reflux. See ya later kidney medication! 2) Her CT Scan was perfect. No problems were detected. 3) Her MRI showed only a low level of iron in her liver from all of the red blood cell transfusions she has received. So, they are not worried about the function of her liver during transplant like they initially thought they would be. 4) This is the biggie. The bone marrow biopsy showed that Charlotte does in fact have no platelets in her bone marrow and only 10% functioning of her red and white cell lines. So, the doctor confirmed with us that she does have CAMT which is the original diagnosis they suspected. However, they have not found the genetic cause for her disease. So, they took some skin with the biopsy so that in the future, when they find other genetic causes for this disease, they can test Charlotte's cells to see if they see that genetic cause. Science is amazing. The fact that Charlotte has such poor function of her bone marrow is a good and a bad thing. This means they will not have to use very much of the chemo to wipe out Charlotte's existing marrow cells, because there aren't many cells there to wipe out. However, it means we need to start the transplant now. 5) Her lungs are HEALED!!!!!! While staying at the hospital, they monitored her breathing with a machine while she was awake and sleeping. Her lungs now read 100% without any help from extra oxygen. The doctors waited to do her transplant mainly until they felt her lungs could tolerate the transplant process. Now her lungs are functioning perfect on their own! The Children's Hospital of Philadelphia is the most amazing hospital. We have had a chance to stay on their oncology/bone marrow unit. What a great unit. Charlotte had her first ride in a radio flyer! She loved it. She sat in the middle and played with her toys. She loved to wave at all the staff members. She also made a lot of friends who are receiving chemo just like she will be. We also participated in our own personal art therapy session. Charlotte made her first Picasso with big, fat markers. (With a little help from mommy.)  Everyday we listen to music, especially country, and we listen to it all day. She has learned to dance and has quite the dance moves. The nurses play Carrie Underwood for her while mommy is out of the hospital, and they think it is wonderful that she has such a love of music. Music is so healing! Charlotte saw a nutritionist daily too, and she wrote in her assessment that Charlotte is "very  charming." I think that is the general consensus from the entire oncology unit. The nurses take Charlotte to hang out with them at the nurses station all of the time. From the nurses to the anesthesia doctors, everyone has had perfect communication and care for Charlotte. We have no doubt that this is where she should be for her transplant. Dr. Timothy Olson is the head of our transplant, and he checks in on Charlotte's progress daily. The transplant process starts Sunday April 17. This will be the best birthday present for Laura whose birthday is April 18!