Just when we thought we were heading to a year end of celebration and completion this week after we had an exciting couple weeks of football, radio, and NFL interviews. We welcomed back Dr. Craddock our primary care Doctor who was out on paternity leave and couldn’t be happier to see him to get a good report wrap up from him. He has always been so great explaining everything so thoroughly and compassionately. We went in for a very last CMVIG infusion before getting out the central line this week. Unbeknownst to us Daniel’s CMV level went back up so even though he has the t-cells to fight the virus on his own presumably we thought we would take advantage of giving him ine more boost JUST IN CASE. It couldn’t hurt in the teams opinion and we were fine with it. What I wasn’t in any way shape or form prepared for was what came next. First of all the clinic was over crowded so instead of being in a regular infusion room we had to wait a bit longer and they put us in the teen center which is a lovely room with sofas and chairs and a tv and video games and it is very comfortable and with no big glass windows to the outside halls which was probably a good thing for today in hindsight. Keep in mind Rob is not with us because this was just supposed to be a regular infusion appointment like we have EVERY MONDAY. Daniel was waiting to get started and I ran down to get some lunch because I was starving and hadn’t eaten yet all day. When I came up with my lunch Doc Craddock was waiting to talk to Daniel ( they are on a fantasy football team together and there is usually a lot of trash talking going on), I saw the look in his face and he asked me to sit down. He started right off by telling me that we needed to get Rob on the phone he has news that has taken even him and the team by surprise and he is very sad to have to tell me that they have gotten some very concerning test results back. Even though the preliminary results from his bone marrow results showed no leukemia there is something else that is very concerning. The floor dropped out from under me and I lost my breathe completely. I chose not to call Rob because I needed to understand what was going on first and know how to explain it to him. I will try my best to condense and explain what we learned over the next two days because as Dr. Craddock did his job and gave us the information immediately and as he got it in real time, what he did was give it to us in pieces and give us worst case scenario and all paths just in case. The problem with this is that he gave us the initial problem on Monday early afternoon and until we had confirmation through tests from another lab in another state somewhere ( I think Washington) we had no idea what was going to happen. Needless to say even though these results were rushed, the time between Monday afternoon and this morning transported me to the very long months of terrifying uncertainty of last year. I have to thank G-d that the end results turned out in our favor and although we have re-entered the realm of more uncertainty we are not as bad as it could have been. So here is briefly what we learned. Daniel continues to be an enigma, just like his case has always been. At Day 100 post- transplant Daniel’s bone marrow biopsy showed that he had accepted the bone marrow transplant and that he was 100% donor cells and 0% Daniel cells (technically 95% donor cells is acceptable to the doctors) this is the definition of a successful graft. If it was not this equation then it would look as though the graft did not take. This was the natural mile marker so to speak to check the graft. One year is the next to check. When they checked on Monday and we just got results the doctors were shocked to find that Daniel’s marrow revealed that he was 90% donor and 10% Daniel. This is concerning because this could mean that Daniel’s graft is failing and that if Daniel’s cells are taking back over and if they are malignant or cancerous is he heading for a relapse. The difference between Day 100 and now and 0% and 10% is concerning. Now we needed to wait to see if that 10% had Leukemia in them at a molecular level and then if he showed the unusual genetic translocation like he used to have when he presented his leukemia in the first place. This is what we needed to wait for. This is the important information that would determine our path forward. At this point Dr. Craddock has explained that he needs to contact our donor and mobilize him for a possible procedure called a DLI (Donor Lymphocyte Infusion) or a last resort of a second transplant. At this point I am sick to my stomach and and needed a break to go throw up. My lunch is uneaten and will be as I am on the verge of passing out. I am thinking about how I was trying to plan a one year celebration surprise party and what about Israel and how the fuck am I going to explain this to Rob. Is he still going to get his Central line out on Wednesday. I KNOW that is what he is thinking. That is all he wants is that thing out of his chest after 18 months and know I am thinking we are starting all over again. Daniel chimes in with amazing on point questions as I sit there speechless. Dr. Craddock explains it again and again and keeps saying he is just explaining everything just in case. Our regular nurse had come in at some point and has chimed in to snap me out of my catatonic phase. She starts debunking all of Dr. Craddocks theories and telling me not to get ahead of myself and we need to wait until we have more information from the specialized test tomorrow. They are rushing them as fast as they can and until we have those numbers we can’t decide anything. We get Rob on the speaker phone and Dr. Craddock explains it all to him. I have now heard it at least 6 or 7 times but am not registering that we are possibly back to square one. I keep saying look at him. He is the picture of health. I don’t understand. Doctor Craddock, finally says, “let’s wait until we know more tomorrow. I was very shocked to see these results and I am so sorry to have to tell you this.”
I would like to say fast forward to today’s results but it was anything but fast forward. We chose to not say anything to anyone because it was not worth anyone else suffering undue stress when there was nothing we could all do but wait. We went through the motions of the night and I cried in the shower for a very long time. I prepared my speeches how I would tell everyone the news.
G-d is good. Results came fairly early this morning (which I am also thankful for) and they were as good as we could expect. The 10% of cells that are Daniel’s truly are cancer free and are not showing evidence of his genetic mutation at all. Thank G-d, Thank G-d, Thank G-d. pfu pfu pfu. Now the quandary comes about what we do about why his cells have come back. And will they continue to do so or stay the same. If they do stay the same that will be fine possibly. Dr. Craddock says if he is losing his graft it is unusual that it would be so late in the game. It would have been by Day 100 we would have seen this happen. This is very unusual (which is not unusual for Daniel). This is why the Dr. will consult with other specialist nationwide about a plan forward, but as it stands instead of what we though of not needing a bone marrow biopsy more than once a year to check him he will need to have one now every month to check that this 10% is not changing at all. Dr. Craddock says some Doctors say recipients can live with a mix of donor and recipient cell in a far closer balance but he is not comfortable with that considering how aggressive Daniel’s cancer was and how difficult it was to get rid of. There was so much more and so much more we don’t need to address and we can just breathe a sigh of relief for the fact that tomorrow we get to go ahead with plans as usual and chalk this up to an enormous scare.
I will look at it as a way that we will get to keep a closer eye on Daniel for the next little while as we will be checking, checking, checking him frequently and thouroghly instead of waiting until next year. I guess I will consider that a silver lining. It is REALLY faint and deeply hidden but I will take it I guess. Tonight I will sleep knowing we are moving forward tomorrow with surgery and then WE WILL celebrate our one year birthday on Thursday.
I would like to say fast forward to today’s results but it was anything but fast forward. We chose to not say anything to anyone because it was not worth anyone else suffering undue stress when there was nothing we could all do but wait. We went through the motions of the night and I cried in the shower for a very long time. I prepared my speeches how I would tell everyone the news.
G-d is good. Results came fairly early this morning (which I am also thankful for) and they were as good as we could expect. The 10% of cells that are Daniel’s truly are cancer free and are not showing evidence of his genetic mutation at all. Thank G-d, Thank G-d, Thank G-d. pfu pfu pfu. Now the quandary comes about what we do about why his cells have come back. And will they continue to do so or stay the same. If they do stay the same that will be fine possibly. Dr. Craddock says if he is losing his graft it is unusual that it would be so late in the game. It would have been by Day 100 we would have seen this happen. This is very unusual (which is not unusual for Daniel). This is why the Dr. will consult with other specialist nationwide about a plan forward, but as it stands instead of what we though of not needing a bone marrow biopsy more than once a year to check him he will need to have one now every month to check that this 10% is not changing at all. Dr. Craddock says some Doctors say recipients can live with a mix of donor and recipient cell in a far closer balance but he is not comfortable with that considering how aggressive Daniel’s cancer was and how difficult it was to get rid of. There was so much more and so much more we don’t need to address and we can just breathe a sigh of relief for the fact that tomorrow we get to go ahead with plans as usual and chalk this up to an enormous scare.
I will look at it as a way that we will get to keep a closer eye on Daniel for the next little while as we will be checking, checking, checking him frequently and thouroghly instead of waiting until next year. I guess I will consider that a silver lining. It is REALLY faint and deeply hidden but I will take it I guess. Tonight I will sleep knowing we are moving forward tomorrow with surgery and then WE WILL celebrate our one year birthday on Thursday.