So the last week has been one of the craziest, scariest, and also most incredible weeks of Ian’s and my life. Where to begin…
Monday we got some good but also puzzling news.
When I last wrote, I described our encouragement regarding the bone marrow aspirate results showing the presence of all three major blood products; white blood cells, red blood cells, and platelets. This past Monday we got final pathology results for Ian’s bone marrow.
The results were encouraging because the marrow showed no signs of lymphoma or any other type of cancer in Ian’s pathology. -This had only been a remote concern but it was still good to hear that cancer wasn’t causing him to not engraft. I think that is one of the curses of cancer, you always have it in the back of your mind as a possible culprit.
The other good news we received was that the supportive environment in his bone marrow, the stroma, looked healthy as well. I had intimated in my last post that we had believed this to be the fact because his bone marrow aspirate had shown some cells present as well. Nonetheless, it was good to hear that the bone marrow was capable of growing cells.
The puzzling news was that the marrow was remarkably “hypocellular”, meaning that the amount of cells they would expect to see after receiving 10 million stem cells in transplant was not as high as expected. The doctor said it was “as if he had been given water instead of a transplant”. (Gotta love comments like that.) We had a mystery on our hands as to what had happened to these stem cells.
The doctors had essentially 2 possible theories, but neither really held water when put to the logical test. The truth was that they did not have definitive answers.
Ian, kit, and I all felt and interpreted the news differently. It was comforting and encouraging on one hand and scary and disappointing on the other. We tossed our own theories around and tried to come up with ideas for how this could of happened but it brought us no peace. When I looked down at the details I could not feel certain about anything.
During our waiting we have gotten better at actively engaging hope in our situation. The love and support we have received during this time has changed Ian. I can’t describe the full extant of his transformation yet because I feel that it is still occurring but there is something tangible and real that is different within him. He has developed a deep calm and peace that is disruptive to the chaos of our environment and the confusion I feel in my heart. He is relieving to be around. When anyone could understandably be angry in his situation, he is not. He spreads joy to the nurses and encourages the other patients. He fiercely loves our son, Tyler. I don’t know how to describe the change anymore with words. You just have to see it.
With the information of the bone biopsy, the doctors recommended giving a medication to help regulate his immune system (IVIG for you medical people who know what it is) and giving the rest of the 6 million cells he had collected on Friday.
Monday night Ian felt a familiar, but again puzzling sensation. His bones began to ache. His body warmed up and he got a low grade fever. If you know anything about transplant, you may be able to guess what was happening but if not, allow me to bore you with some medical mumbo jumbo…
Since 9 days after transplant Ian has been receiving a medication call Neupogen. What this medication does is stimulate the bone marrow to produce white blood cells at a faster rate. Many people who get chemo at some point receive this medication or a medication like it because most chemo drugs kill a large number of your white blood cells and your body can’t keep up with producing them fast enough without some help. In preparing for autologous transplant, (the type of transplant Ian had, where he donated stem cells to himself) they give you high doses of Neupogen to kick your bone marrow into overdrive in producing white blood cells and, with high enough doses, to get your bone marrow to release stem cells into the blood supply for collection. The bone pain experienced by patients after even low doses of Neupogen can range from unnoticeable to severe. With the high doses you get before transplant, most people have some pain.
But back to the story…
On Monday night Ian began having that distinctive, familiar bone pain. The pain that signaled him that his marrow was going into overdrive. Tuesday morning his count was 0.2. After spending a week or so at 0.1, 0.2 was an improvement, but we had also been at 0.2 before and seen the count drop. We were hopeful and cautiously optimistic but we tried to contain ourselves for fear of setting ourselves up for heartache.
Tuesday came and went. Ian’s energy has been improving over the lat few days and he has been able to walk outside so we spent much of the day in the beautiful desert garden they have here at the hospital. Ian calls it “my garden” as in “tell the nurse I’ll be in my garden.” We are really taking over this place.
The doctors shared our cautious optimism but moved ahead with the plan. Ian got the IVIG on Tuesday to help regulate his immune system. One of their theories was that maybe he had been having some auto-immune reaction destroying his cells, but as I had mentioned earlier it is easy to punch holes in this theory. The risk was low and the potential gain was high, also there were no other ideas, so Ian got the medication.
Tuesday night Ian had the same familiar bone pain. It was so strong this time, it affected his sleep.
Every morning labs are drawn around 4:00 am and we have become accustomed to waking up at 5:00am to check the mayo clinic app on our phone to see Ian’s test results. Yes you heard me right, they have an app #mayoproblems
Wednesday morning it was 0.3! We were so excited but also scared to be excited for fear that somehow it would all just go away. I know I, at least, have been traumatized by the unpredictable path these last 2 years have taken and have all sorts of weird hangups that find ways to bite me in the ass. One of these hang ups is always meeting good news with an initial level of disbelief.
We spent the day walking and enjoying our time together in the garden. We all played a game of cards during the night and at the end Ian said he hadn’t had that much fun with his family in a very long time.
Ian’s bones ached last night and his low grade fever, which we now believe to be fevers of engraftment, came and this morning we woke up to the incredible news that he is 0.5. I will say it again, 0.5!
The doctors have decided that they will hold on giving him any more cells, because his bone marrow is working. It is recovering finally. We are so happy and relieved! I have spent much of the last few days explaining and then re-explaining the medical information from he last week to family but also to myself. There is much of this that will remain a mystery. I feel great comfort from being able to say that. I cannot explain how it all adds up but, nonetheless, the sum is that Ian is finally engrafting.
He feels great and he doctors want to release him tomorrow so he can spend the rest of his recovery with us at home. There is still some journey ahead of us but we are going to begin to get back to normal life.
Thank you all for your care and concern during this time. Thank you for your visits, and cards, and gifts and encouraging words. We have never felt alone in this and we are so grateful for you all.
Ian walking with the fam in his garden
Sorry if these seem a little “Jesus camp” but we were praying with Ian and Tyler just joined in.
Ian in “his garden”