Updated: Jan 4
December 7th: home, then back to the hospital, then home again!
Dear lovely, beautiful friends and family who have been the most incredible support system EVER,
It seems like it must be time for another update….. Every time I reach out, I am blown away by the exponential return of support that we receive….. Literally my heart explodes……… and I am always left speechless for a little while…. But, since the last note from me, on November 21st, so much has taken place, including returning home. And being readmitted to the hospital. And home again. Our roller coaster continues, but in fact, it is just like every one of YOU reading this, good days, bad days, and all that matters in the end is how we deal with the hand we are dealt…. what we decide to care about….. where we put our energy…..how we evolve and adjust and grow…… I am writing to you because throughout this process I feel you with us, sense your presence and love and prayers…. You have held our hands and held us up…….. As always, I thank you, we thank you…. And maybe if you want a glimpse into our last couple of weeks, you might read on a little more…..
We were given the news on November 24th that we could go home, and honestly, it was a kind of mixed bag of emotions…… I did not actually believe we were being discharged until my car was packed with our hospital room decor, the motivational posters, legos, yoga mats, clothes, the huge variety of snacks (just IN CASE Michael could eat something- anything!), and so many, too many to count, medications for him to take at various set hours throughout the day and night. After a month and 5 days of living in the Bone Marrow Transplant Unit at Nicklaus Children’s Hospital, home seemed like a distant dream. It had always been there, but somehow just out of reach. Room 6031 had turned into our little studio apartment and the nurses had become our advocates, BFF’s, and foster family. It seems like we should be nothing short of ecstatic to go home, and we were! Yet, there was also a shadow of fear. A glimmer of doubt. We had been longing to be discharged, to go home. But leaving the security of those 4 walls was not as black and whte as one would think. It gives you a greater understanding of people staying in a relationship simply because it is safe. The unknown is scarier. As we said our goodbyes to a few special nurses (and I cannot stress enough how every nurse we encountered was special!), the words that automatically came out of my mouth were how much we would miss them and how amazing our experience had been….. As if it had been summer camp. What? Amazing? Because yes, it WAS amazing……. and beautiful….. the way a work of art can be shocking and harsh, but also moving and evolutionary. It can change the way you look at things. Like life. I would not wish these past months upon anyone. No one. Yet, I am so grateful to be living this transformational experience, staring mortality in the face and taking another breath…….. Oftentimes I have told Michael that I ache to change places with him. I want to be in a movie like “Freaky Friday”, one character wishes to be in the shoes of another, and then somehow the two bonk heads at the precise moment of a shooting star, lunar eclipse and alignment of all the planets (probably with Venus in retrograde) and boom- they have switched places! I wish I could take his place, even for a short time, to give his mind and his body a break from these past 5 months of treatment, and constant physical and mental agony. But we are where we are, we are WHO we are….. And I cannot change it. So, that said, yes, this has been an amazing moment in time. Life changing. Beautiful. Tragic. And going home was so sweet, but so intimidating. We had been under the umbrella of 24/7 nurse care, doctors never more than a few footsteps away. What if I missed a symptom? Or misread a reaction? Forgot a medication? How could I control the germs in my house the same way they did in the BMT unit? But, home was calling us. My bed. The cozy couch. Our kitty cat! I was dying to do laundry, to cook and do dishes! I just wanted to be with my three kids under the same roof. Normal.
And so it was… and we were home.
It was so good to be home, but normal it was not. It was so much harder and more painful than we expected. In my fantasies we would step onto our front porch and everything would be right with the world. Alas, no……. And Michael’s stomach seemed to be taking the brunt of the punishment. We had been told that Michael’s one job was simply to drink, eat and take his medications. We laughed and thought, pshaw! That’s nothing after everything this kid had been through! But it turns out, moving mountains may have been easier at times than trying to hold down a sip of water. We were home for a day, hospital the next…… and most of the 7 days that followed we spent our daylight hours in the infusion unit of Nicklaus Children's, getting fluids, magnesium, and whatever else his body was missing, and nights at home, reminding ourselves that it WOULD get easier and home would feel safe again. It was a cycle of nausea, vomiting, diarrhea,trying to eat, attempting to drink, not much sleep, nausea, vomiting, diarrhea, and the cycle would start again. There were moments of relief, thank goodness, until December 2nd…. That day there was no relief, the pain became too unbearable for this tough kid of mine, and we were readmitted first to the ER, then the BMT unit, to reunite with the security of our same room, same bed, and same wonderful nurses who we were so happy to see, but perhaps not quite as thrilled under these circumstances. We were blessed with perfect timing because precisely Thursday morning, the morning after our re-admission, his body showed the first external signs of GVHD, Graft Versus Host Disease. At last an explanation for how hard just getting through the day had become. GVHD is not unexpected, but not exactly welcomed, either. The graft, the donor, was “attacking” the Michael cells that it did not recognize as its own and causing a kind of brawl inside Michael’s body. He had to undergo more tests, more ultrasounds, more procedures, to make sure the donor’s aggressive cells were not doing too much damage to the Michael cells, the cells that he still does need, to survive, and of course, he was given more medications.
A few days later, we were discharged for the 2nd time. This time, maybe with lower expectations. Once again, home we went….. Eyes straight ahead, chins lifted, walking a little slower than before, our bodies a little more tired, our minds a little more open perhaps, our hearts a little more appreciative of this moment, our souls changed anew. We made it through chemo. We made it through radiation. We made it through 5 weeks and 1 day living in a hospital room. We made it through this next admission. And we made it through our own front door, of our little disinfected house, which we share with a brother, a sister, a kitty cat, and maybe not such high hopes of home symbolizing the end of this painful journey, but perhaps at the very least, “home” is the next chapter……