July 17th, 2008
It has been about a month since I was release from Hopkins after my 24 day stay. I had completed the induction round of treatments that are designed to remiss the leukemia and set me on the road to the bone marrow transplant. At this point in 2008 we had a target date of August where I would receive the transplant if all things went as scheduled. Unfortunately, it was about this time where an already bad situation gets far worse.
To frame this part of the story; I was recovering nicely, in fact I was almost of the impression that chemo wasn’t so bad (hind sight says I was way off). After the first round things were going as planned, I was home from the hospital, recovering quickly and spending time with my family. Joey was two months old and Ian was 4. In my spirit of determination, I was not going to miss spending time with my kids. During my home time, I decided to take Ian to Hershey Park. A 4 year old and bald leukemia patient alone… It was perfect, a light rain was falling, it was cloudy and cool. Chemo and antibiotics makes you really susceptible to sun burn, so this was great. Ian was tall for 4, so he passed all the height requirements and we rode every roller coaster in the park. We had a very memorable day together. It was an important day for he and I. I had no idea what was going to happen to me in the future. Each moment was terrific and to be cherished.
We returned from the park and I woke up the next day with a stiff neck. I blew it off for a day or so, but it really started to bother me. I was reluctant to go back to the hospital and explain that Johnny Cancer patient had broken doctors orders and played all day at Hershey Park with his son. That said, it got to the point where I could no longer stand the pain. I went to Hopkins and, as always, they drew blood. That is a prerequisite for every visit, even to this day. They check your blood and see how you are doing. Well, things took a little longer than normal, and they usually take a few hours. When things finally came together, Lisa and I found ourselves in a back room with my primary doctor, primary nurse practitioner and my primary out patient nurse. I had never before seen Dr. Gore, Kathy Oakjones and David Ratkoff in the same room, at the same time. Needless to say, that is not a good thing to have that happen. The news at this visit was that I had a blood clot in my jugular vein and, even more importantly, I had relapsed. The leukemia was back. I would not go home, I would be readmitted that day to get blood thinners in my system and to prepare for what would be another round of induction chemo. I was starting over, as if the first round of chemo never happened, except it did. The life saving bone marrow transplant date was cancelled.
I am going to take a brief hiatus from telling this difficult story to provide you all with something completely different, something hopeful… On Monday June 22nd, my family and I are leaving for Germany. We will be spending time with my bone marrow donor, Isabel, in Rottenburg Germany. I will be posting pictures and info from the trip. It should be an amazing experience. Please stay tuned… Erik