Today is the second day of chemo and Jace is handling it great. It's to be expected that the first couple days they are relatively unaffected, and as the treatment progresses, they start to feel more icky. With this transplant in particular, his entire (or close to it) bone marrow will be wiped out, causing him to become transfusion dependent. That means he will be consistently receiving platelet and red blood cell (RBC) transfusions regularly until his transplanted marrow starts growing it's own cells. So thank you so much to all you blood donors out there!! Every drop counts!
Treatments are all done intravenously (IV) through his central line (CVC- Central Venous Catheter). This allows quick access to the main blood stream without needing to *painfully* insert an IV catheter each time. All meds, transfusions, and chemo drugs are able to go through the CVC, along with fluids and IV nutrition if needed.
Since every patient is so different, there are no rules as to the milestones before, during or post transplant. But there are broad estimations. For instance, usually by day -5 he will start to feel really icky: decreased appetite, low energy, sad, achy, etc. Transplant (Day 0) is fairly anticlimactic because the stem cells are placed in a bag like a typical blood product transfusion. For the first few weeks post transplant, patients typically feel really icky, and a lot of times develop what is called mucositis, which are sores or lesions throughout the gastrointestinal (GI) Tract. This means every surface from his lips and tongue, down to his cute little bottom will be tender. This is one of the biggest reason transplant patients tend to have a decreased appetite and need IV nutrition.
The mucositis starts to clear up around the time of engraftment, which is when the donor cells decide to enjoy their new home and start producing the all important white blood cells (WBC). Another important marker is when the WBCs start to be produced and the blood product counts start to rise. Before this time, Jace will have no cells to fight off illness, therefore the stem cell transplant (SCT) wing is an isolated wing of the hospital.
Every person coming in to the SCT wing has to scrub in and wear booties. Also sanitizing hands before and after entering a room is a must. Any personnel who enter our room have disposable gowns and gloves on at all times, and will move to wearing a mask as his WBC counts fall.
Time will fly by, and also drag on. Thank you to everyone for keeping us in your thoughts and prayers. Hopefully it will calm down a little bit so we can keep everyone posted!!
Andrew, Becca and baby Jace
P.s. Jace has made so many new friends at Stanford, he has been given goodies from the Child Life department, working with physical therapy and occupational therapy, and many many more ( those are just the fun people that play games with him