Patrick Henry Moore
Henry and Dr. Boxer. He helped invent Neupogen and is the first doctor we met at the University of Michigan. He speaks at the annual Neutropenia Network meeting and wants Henry to speak at the next one on the East Coast. Dr. Boxer introduced us to Dr. Levine.
Sunday, May 16, 2010 4:29 PM CDT
Three years after his successful transplant...
I dreamed of this day many times. Honestly, many times, I had visions of me sitting at his funeral. But for the most part, the way that I got through most tough times for the first 7 years of his life, was to picture him playing sports, graduating from high school, or running through the yard. I also had thoughts of what his donor might be like, where he might be from, and whether or not he would want to meet us. Those positive visions dominated my thoughts. Still, I am so conflicted inside. I want to scream with joy that his story has been so successful, yet I know, there are others who did not make it. I can't get it right in my head or my heart.
Two weeks ago, Henry and I flew to Michigan for a quick trip for his three year check up. It had been 8 months since his last visit.
When checking in for our flight, I realized that our seats were on an exit row. I immediately became tense and must have verbalized some sort of disgust, because Henry immediately grabbed me by the arm and asked me to please calm down. He said he wanted this to be a fun trip and that I needed to be calm for that to happen. I had this mini proud moment and laughed at the recognition of how God works through children. (They changed our seats-minors and recovering fractured ankles aren't good candidates to perform exit row duties.) Henry was so eager to help with pulling the suitcase through the airport, even though he had a backpack full of books and homework. I really did enjoy my time with him during this trip.
We arrived in Detroit without any delays and Henry talked the rental car rep. into renting us a little sea foam green Beetle for the basic daily rate. He loved sitting in the front seat and with the larger windows, had a great vantage point to help me drive:) We stayed in Canton, since the regular rate in Ann Arbor (where we usually stay) was $279/night due to it being Spring Commencement weekend.
One of Henry's favorite nurses lives in Canton and met up with us on our arrival. She was studying for finals and couldn't join us for dinner but we continued with plans to go to Real Seafood. Patrick and I first ate there on Good Friday, the day of Henry's first transplant. It was Lent and we were looking for a seafood restaurant and just happened upon it. We had an awesome waiter who asked what we were celebrating and we told him. The manager of the restaurant came over to meet us and took care of our bill that night. She is a dear lady who has even been able to meet Russ and his family. They frequent the restaurant and she always sends dessert over as a treat. Henry had a big appetite that night, he ate the entire adult portion of surf and turf! After dinner, we stopped at Target and Henry picked out some treats for the patients currently on the transplant unit. He really enjoyed that and he picked some of the same cool toys and treats that some of you sent to Michigan.
We had to be at U of M pretty early and graduation traffic was horrible! First stop was the pulmonary lab, to test his lung function and then to the cardiac lab for an echocardiogram. Both tests were normal. His white blood count is slightly increased (which is good as it is usually really low), but still, there is a big L in the column next to his neutrophil count. That is just a little flag so that you can glance down the report to see which levels are low (L) or high (H). Dr. Levine could see no signs of the graft versus host disease and told Henry that he could now stop all of his post transplant medications. Henry was almost tearful. He immediately called his father to tell him to throw away his pill boxes! It is the first time in his life that his health has not depended on a medication. Dr. Levine told him to come back in a year and eat whatever he wants to eat, travel wherever he wants to go, and to keep up the good work!
After his appointments were all finished, we ventured up to 7 Mott and Henry was able to hand out his gifts. The staff was especially impressed with his growth and maturity and were in awe of the miracle of him surviving both transplants. They reminded us of some funny things that he did while there and the reminiscing brought back many memories to the two of us. They asked Henry if he remembered being there. He said yes, especially the smell. It immediately gave me cold chills, because I started thinking of that smell as we made our way to the unit that day. It isn't a bad smell, although it does give me memories of chemotherapy, barfing, long nights without sleep, an irritable but funny child, and confinement. We left, knowing that the next time we visit, 7 Mott will probably be on another floor (different number) in the new hospital.
Of course, we went to Angelo's for lunch and then to the bookstore to pick up a recommendation from Dr. Levine. (With four boys himself, he always keeps Henry informed of the latest and greatest series for boys) As we got into the Beetle to leave the bookstore, I said, "I love Ann Arbor. It is a beautiful day and I wish we could stay all weekend. I do have to say that I probably wouldn't love it as much if you hadn't made it. I probably would have never been able to come back here." He said back to me, "Oh, that wasn't going to happen." I am not sure if you all remember, but it was Henry that turned to me in 2007 in the awkward voice and told me to just BELIEVE, when I was having a moment of doubt.
We got out of town as soon as we could because there were 80,000 tickets given out to Spring Commencement the following day. President Obama delivered their commencement address and EVERYONE, everywhere was talking about it. Once we arrived at the Detroit airport to leave town, Henry started to feel tired and was a little tearful. He curled up in a ball on his backpack and fell asleep while waiting to board the plane. I do think that he was emotionally and physically exhausted. That is usually how I get each time we visit, but this time, I was just about to burst with excitement. But, if I am totally honest, I am still afraid that somehow, one day, the bottom will fall out again.
Since we returned home, I have noticed Henry having anxiety at night. He comes in to say goodnight and talk two or three times before he can get to sleep. I am sure it is a combination of the medication wean, his end of year academic testing, and the fact that he has decided to run for vice president of the SCA at his school. You know for years, we have programmed him to believe that he could die if he didn't have his medicine. We never said, oh let's skip it today, if he cried too much. That wasn't an option. He had to take two shots a day for seven years in order to live and that was that. Then, for three years now, he has taken oral medication twice daily. I would set up a pill box and would remind him to take the medicine and then check the box to make sure he takes it. We stressed the importance of the medicine and the ramifications of him missing it. I am sure that it has been hard for him to reconcile it in his head that one day, he could just stop the medicine and that he isn't going to get sick. I, however, have reconciled it in my head.
I know that this is a lengthy update as I don't update as often as I probably should. We really are trying to move on with life, but the Kostmann Syndrome, the transplants, the people we have met, the friends that we have lost, will forever change the way we approach life. We know that God has been ever present in Henry's life and and we hope and pray that he continues to be an example of that miracle to all that know him.
Thanks to all of you for continuing to check the web site. I will post some pictures here from the visit.
Read Journal History
Home Sweet Home
403 Harvey Street
Radford, VA 24141
www.caringbridge.org/visit/jensenbyrd a friend from AL whose son has Neuroblastoma
www.caringbridge.org/visit/madelinethelen a fellow transplant survivor from Michigan
www.caringbridge.org/visit/kimjones a friend from Radford who had a bone marrow transplant. at Duke for aplastic anemia