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!

She's on the move!

Once Charlotte turned one year old, she decided it was time to rock and roll. She has had an "explosion of movement" as her occupational therapist called it. She is finally crawling, which is great because she has been standing for a long time due to her belly problems. So, now she can connect the sitting and standing. She is all over the place. She pulls up at her crib, furniture, and tables. She doesn't stop moving. Her speech is taking off also. She sings into her hairbrush and holds very in depth conversations. What a fun age! Charlotte's transplant team has set her admission date for April 14. She will receive chemotherapy to wipe out all of her bone marrow cells, and then her donors bone marrow will be transplanted on April 27. That's when the hard work happens. Charlotte's body will have to work really hard to start making new blood cells using her donors marrow. She will be in the hospital for 30-45 days after she receives her donor's bone marrow. We have started the pre transplant process. The doctors have looked at her lungs, and they say they look great! No complications were found at all. The ENT doctor also scoped her and saw no problems. The transplant doctor did her bone marrow biopsy now that she is big enough. We are waiting for final results. The surgeon placed a central line with two lumens so that she can have 2 instead of 1 for transplant. She has tolerated everything really well! We will have 3 big appointments at CHOP at the end of March to start the major pre transplant scans. Doctors will look at Charlotte's breathing ability, liver, kidneys, heart, etc to see how the organs that are typically effected by transplant are functioning. This way they can have a baseline to help her after transplant. We have also been working on getting Laura more help as Charlotte's appointments start increasing. Laura and Charlotte will be spending lots of time hanging out at Nana's house in Delaware!

One year old

The time is here! Charlotte has officially turned one year old. It is time to celebrate a difficult but miraculous year. It is unbelievable to look back at how far she has come. Charlotte is the epitome of resilience. It has been unbelievable to see how far David and I have come. We are stronger because of our daughter. All of our lives are forever changed. For several weeks we planned a beautiful princess party for Charlotte. (Thank you Pintrest for all the wonderful ideas!) It seemed the right thing to do because right after Charlotte was born, Kate and William had Princess Charlotte. We bought tons of pink and gold fabric and accessories to decorate the house. We had a close friend make beautiful pink and gold desserts. We invited 20 family members and had a wonderful celebration of a difficult but life changing year. Charlotte met her cousins Alyx and Karolyn Harris from North Carolina for the first time. The instant love between them was amazing. Charlotte had her own special outfit for her big day which included a beautiful headband and a pink ballerina tutu. Lot of memories were made. The day was perfect!

A confirmed donor

After a long stretch at home, Charlotte contracted viral pneumonia. We went on a long hike at a local park towards the end of December, and we think she might have gotten sick. It was a great hike though! Charlotte loves the outdoors. She looked at the rivers and trees with eyes wide open. After three days, Charlotte was discharged and is doing well. She has been home for the entire month of January otherwise! The really exciting news is that we have a confirmed donor for her bone marrow transplant. We got the call and apparently 3 people have been found to match Charlotte and are willing to donate. The doctor at CHOP has picked the best one, and we will start her transplant in May. The doctor wants her lungs to heal as much as possible, because the conditioning prior to transplant can be very hard on the lungs. The good news continues to roll in. We had a follow up with Charlotte's cardiologist and the hole in her heart has closed on its own! Her heart looked normal on the EKG and echocardiogram, so  we no longer need to see the cardiologist! Also, we had a follow up with the developmental pediatrician to assess Charlotte's progress with gross motor skills, fine motor skills, cognition, etc. He said that Charlotte is "remarkable given how sick she has been." She is developmentally right on track for her age! She smiled, laughed, and flirted with the doctors for the entire appointment. Hopefully February will be as good as January!

Christmas and New Years at home

What a wonderful way to begin the New Year. December was officially the first full month since she was born that Charlotte was not in the hospital. What an amazing feeling. We have soaked up every minute of time as a family. Charlotte finished her 2 week dose of the antibiotic which helped with the bacteria in her belly. It really helped reduce her vomiting! We attended our first church service as a family on Christmas Eve, and Charlotte did so well. We sat in the back so that Charlotte isn't surrounded by colds and germs. She is still easily susceptible to upper respiratory infections, so we have to be very careful about who she is around. Then, we spent Christmas Eve and Christmas Day at Nana's house. We had a wonderful dinner with the family. Christmas Day was better than we could have ever imagined. The best part was having Charlotte home. We played all morning and opened presents. Charlotte was definitely spoiled by her amazing friends and family. David and I even got to take a nice long run in the woods to get some fresh air while Nana watched Charlotte. Christmas Day was definitely wonderful. Then, we rang in the New Year together as a family at home. It was more than we could have hoped for. Charlotte was sleeping soundly in her crib, so we woke her up at midnight and watched fireworks on our rooftop deck. Here's hoping that January is another good month!