More of the same ….
Mucoscitis continues to be a nightmare! While its better than it was last week it’s still causing incapacitating pain, nausea, vomiting and diarrhea.
His overall ickyness persists as well (when I say icky, imagine the worst flu you’ve had). Every moment takes tremendous effort – things we take for granted like: sitting up, standing for more than a few seconds & walking a few feet. He’s exhausted and sleeps most of the day.
He still requires oxygen. Respiratory visits him every four hours to help him with breathing exercises. Sometimes he’s able to perform them sometimes not. During Dr. Pui’s daily visits he is always quick to remind John that if elephants lie down for too long their lungs will collapse ~ that’s his way of saying it’s important for John get up. Since John has already experienced a partially collapsed lung we are very sensitive to his advice.
The NG-tube is proving to be very useful. John’s daily “feeds” are going well; providing him some much needed nutrition. And it’s a Godsend for medication delivery. He will most likely leave the hospital with the NG-tube so I’ve been learning to use and care for it. With the nurse watching, I change out his bags of formula and give him his medications. This is just one example of our many caregiver responsibilities.
John is more lucid, the brain fog is lifting. He’s had several neurological exams to rule out brain damage. The exams were upsetting to John – he realized he wasn’t answering the doctor’s questions correctly and his eyes would fill with tears. He’s in there but sometimes he’s just trapped. Rich & I are still very concerned and we are waiting anxiously to see John’s cognitive abilities return to normal.
The engraftment process has started. Little by little, every day he has more cells. The process of engraftment is micromanaged by his transplant team – they want the cells to engraft slow and steady. His first weekly chimerism test results showed he was 99-100% donor. It’s an acceptable percentage for now but post-engraftment (next week) he needs to be at 100%. You may recall, 99% is a failing grade in transplant so we continue to pray next week’s test results will show 100% donor cells. We don’t want any of John’s cells lingering around! It’s essential that his entire immune system be replaced; his new immune system is what is going to kill any residual leukemia. An interesting fact – John doesn’t have the immune system of a 14 day old baby he has NO immune system. You could equate it to an immune system of a fetus during its second trimester.
Rich & I are still learning so much about the stem cell transplant process (they really should call it an “immune system” transplant). It’s a lot of information to absorb. We are doing our best to stay informed and educate ourselves ~ lots of questions for the doctors and lots of nighttime reading.
Living at the hospital, inpatient, for the better part of 3 months is exhausting but we are trying to manage our new norm the best we can. Our daily lives revolve around managing John’s care. Rich attempts to balance work and being a caregiver – he set up a bedside workstation and has mastered talking on conferences calls while catching projectile vomit. Bella mostly hangs out in the Leukemia patient lounge in the main hospital, diligently doing her homework. (she’s knows all the nurses there and they keep an eye on her). My day is spent hovering over John, attending to his every need, desperately trying to ease his suffering. We are surrounded by supporters, nurses and doctors and staff that love and care for our family.
We are homesick and miss the life we once knew. But …
“We must be willing to let go of the life we planned so as to have the life that is waiting for us” ~ Joseph Campbell
Please keep sweet John in your prayers.