Being that only 22,000 people undergo a stem cell transplant in the U. S. in any given year, it makes sense that few of us know what it entails. It’s certainly a process. There might not be twelve steps like the road to recovery for an addict but certainly it comes with its own hill to climb. Step one might be diagnosis; determining that you can’t continue the way things are. Step two was decided for us when we got the call that drug therapy wasn’t going to be enough; a transplant was Scott’s only option for recovery. While we couldn’t have been more satisfied with the care he received at Mayo Clinic in Rochester, Minnesota we quickly learned that a transplant there would require living there for the 100-day process. Our blended family consists of many Michigan State University graduates, so turning to University of Michigan was a little challenging but it was a decision that had to be made; step three. Then step four was finding him a donor. After sibling testing proved unsuccessful, the search went international.
It’s amazing to think about all the moving parts in this adventure. Planning for the process, bone marrow biopsies and getting clearance from the dentist and eye doctors. Finding the ideal donor among the near 9 million people in the registry and harvesting those life-saving cells. Shipping them over 4000 miles while maintaining a temperature of negative 190 degrees or less. Scheduling the thousands of people working each day at Mott Hospital. Everyone from doctors to the cafeteria staff to maintenance. Nurses administering not only a multitude of drugs each day but actually transfusing those precious cells of new life; step five. Techs monitoring all the patients in-take and out-flows; taking vitals and changing the sheets. Laundry. Trash; and lots of it. Hundreds of tests; taken, processed, billed out and posted to MyChart – the Holy Grail of medical communication.
Sunday, I noticed a new report had popped up regarding Scott’s progress on the engraftment process. Interesting enough, last week they were beginning to wonder if the process was working, since he was requiring so many platelets. Looks like the results came back to show that he is 100% engrafted. Meaning his donor cells have totally taken over. This feels right, since we are seeing his rash and most of the “battle” related symptoms going away. Step six; Hail to the Victor!!
I read that the adult human body contains about 10 pints of blood. Interesting since we estimate that he received 20-25 pints in the past month. He lost some with the bloody nose and when they took that spot off his nose but most of it must have just been burnt up like rocket fuel. The body really is an amazing thing.
After much planning, we left Room 45 and the halls of 7 West at 2 p.m. yesterday with the hopes of never returning. Step seven. We had a visit from the traveling nurse this afternoon and she helped me start his first home IV infusion. He wears the pump and bag of magnesium in a fanny pack and it will run for 8 hours. We are already scheduled back in the out-patient clinic for platelets on Wednesday and Friday. The nurse will likely return on Thursday to supervise my first solo dressing change and after that we will be on our own.
Not only can I report that he has been released but we have also worked out the plans for the rest of our home-away-from-home stay. I think I already mentioned the problems I was having trying to find one place for the remainder of the 100 days. We were looking at having to move out every weekend and either moving back or to a different place since weekends in Ann Arbor were all booked weeks ago. While searching I happened upon a place on a small lake near Springport that was wildly out of our price range. That led me to think a little more creatively and realize that a family member of a friend had a summer place on Duck Lake. Long story short, they have graciously agreed to let us rent it for the next couple months and we will not have to move multiple times. We leave our Airbnb on Saturday morning and will head to Olivet to recuperate. We are so happy about this arrangement and thankful for their willingness to help us out. It’s close to our friends and my old stomping grounds. It’s remote and quiet. We will be able to enjoy some country road cruises while keeping a low profile during this time of infant immunity; the road to recovery and step eight.
Somewhere along this path of growth and recovery is coming to grips with the fact that sometimes we need help. We’ve had so many people ask how they can help and accepting money hasn’t been something we have been comfortable with. I’ll have no choice but to ask people to sit with Scott so I can tend to things at the store occasionally. While neither Scott or I are working, we have managed to position ourselves to financially weather this storm. Realizing that there are people out there that still wish to help out, daughter Alli has come up with a way that is easy and something that will certainly make life easier away from home. She has gotten us a Shipt account so that we can order groceries and necessities from Meijer in Charlotte and they will be delivered directly to the house. It’s a great idea since Scott isn’t supposed to be left alone more than 20 minutes unsupervised and it will take me that long just to drive to the store. Those that feel compelled can put money into our grocery account making things easy for us and them. We can do that; baby steps, nine and ten. Accepting it and then being ok with it.