I wish I had the energy to post everyday but our days fluctuate between chaos and organized chaos so, I’ll try my best to sum up the last six days for you.
John has received the following transplant infusions:
Day 0 and Day +1 Hematopoietic stem cells: the blood cells that give rise to all the other blood cells
Day +2 Memory cells: T cells that have become "experienced" by having encountered prior infections, cancer, or previous vaccinations. During a second encounter with an invader, memory T cells can reproduce to mount a faster and stronger immune response than the first time the immune system responded to an invader, such as cancer.
Day +6 NK Cells: The human body’s first line of defense against cancer is NK Cells. NK Cells are white blood cells that scan the body for abnormal cells, destroying them before they can develop into cancer.
Nausea is mostly under control. I think we finally found a good cocktail of anti-nausea medications. It is on a continuously drip into his central line for added comfort.
Diarrhea is endless. It’s like nothing he has ever experienced before. I’m going to leave out the details ~ the diarrhea stories that happen in transplant stay in transplant.
John seems to drift in and out of consciousness. He is exhausted. During this stage of the transplant his body is expending a massive amount of energy. They equate it to running a marathon every day.
He has weird, vivid dreams, often catching himself mumbling the fantasy aloud. They are interesting to hear but alarming to witness the toxic effects the medications are having on John’s central nervous system.
When he’s not mumbling he’s moaning/weeping in his sleep. It’s heartbreaking to listen to. We watch the monitors to make sure he’s blood pressure and heart rate are not elevated – telling us if he’s in pain while he sleeps.
Mucositis has begun. A quick lesson on mucosa - the inner surface of the GI tract is lined by a mucous membrane known as the mucosa which is covered by a thick protective layer of mucous. As a result of cell death (from his high dose chemotherapy) the mucosal lining is sloughing off, coming out one way or another! When he vomits it up it looks like bloody boogers wrapped in sheets of his GI tract. It is a debilitating side effect of the transplant process.
Pain is endless and unbearable at times, he has nearly passed out from it several times. Visibly his body shakes from the pain. He continues to be on a Diluadid (Hydromorphine) pump with access to a push button for extra boosts when needed – which is often.
A sense of Icky overwhelms John 24/7. As the cells start to settle into the bone marrow a general awful feeling engulfs him.
We finally gave in to the inevitable, allowing the nurse to insert a NG tube (a tube inserted through the nose and into the abdomen, delivering nutrition/medication directly to the stomach). John has not eaten anything in weeks and his new cells need nutrition so he has continuous feeds through the “noodle” of predigested formula. As I mentioned above it’s also used to deliver medication. With a very raw GI tract, it nearly impossible to swallow pill after pill after pill so, the NG tube elevates that burden from John. Unfortunately every time he vomits up clumps of mucous and sheets of his GI tract the noodle comes out with it. We then have to pull it back out his nose and start all over again. It’s been very distressing and traumatic experience.
Fevers come and go but the highest fevers are yet to come. Rich and I have been cautioned that the NK cell infusion will bring on days of fevers that cannot be recorded on a thermometer.
This process continues to be very taxing on John’s already compromised organs. Organ failure is a very real possibility and Rich & I agonize over the ability of John’s organs to stand up to this intense process.
John is to the point where he needs one-on-one nursing. He is in constant need of medical care. We are finally finding our rhythm with the nurses up here on transplant and learning to trust their abilities.
Very rarely do we see signs of John. He can barely open his eyes let alone show us a familiar smile. We only hear his voice when he is pleading for mercy. He lays in bed a shell of what was once a thriving young boy. Rich and I desperately hang on to a smidgen of hope that he will reemerge.
The barbaric transplant process and its effects on John is taking its toll on Rich & me; we are struggling to see the light at the end of tunnel especially with the worst days yet to come. Bella is still eternally hopeful, refusing to believe anything other than that her brother will survive.
With so much heartache I find it difficult to find any joy but on this Thanksgiving Day I am still thankful for so much: the unconditional love and support of our friends, family and community, the doctors and nurses at St. Jude who continue to carry us through this journey, and the blessing of sharing this day John, Bella and Rich.
I hope you all find time today to reflect on your many blessing. I also hope you find time to think about John and the many other children that are fighting for their lives.
Be thankful it’s not your child.