I know that many of you keep up with Evan on my sidebar, but today I'm going to post the update here because the news is so very serious.
He has rejected his first bone marrow transplant. In this post, from the CaringBridge site, Jaime explains the options and what the family has decided.
When you read this, you will realize how desperately this family needs our continued prayers.
Day +27 our 157th day here...
So, yesterday was incredibly long as well as busy. It began with Evan's additional line being placed at 9:30. The wonderful staff in IR allowed me to be in the room until Evan was loopy enough for me to leave. Dave, their fantastic PA is the one who placed the line, he has also done things for Ian so we know him. It also helps that our new BMT PA (who we love) came from radiology and as able to call in a special request for Ev! When they were done placing his new double lumen power PICC, Derm did a skin biopsy of his rash area. Let's just say that was not a fun time. Then his silly momma almost passed out due to a wee bit of heat overload, talk about embarrassing! Evan had a pretty rough hour after with some aggression, but had a good day overall.
When we got back up I met with Dr. Dave and the team. At this time, our two options were presented with their pros and cons. I have seriously debated if I was going to share this information and I have decided to. Please know before you continue reading that you may not like what is said. It is not easy for us to think about it either, but we also must know the facts. So that being said here are the two options that were presented:
Option 1-Use Frau X's frozen cells
If this option were chosen we would be giving him all the T-Cells which would be 10 Million vs the orignal dose of 100,000. Wow you may be thinking, yep! So, what does that mean in english, GVHD (graft vs. host disease) for sure. How much, not sure and this is the issue. If he COULD survive the GVH, nobody can tell how bad it would be. His oncologist, Dr. Mike, is very concerned that he will not survive the GVH. While Dr. Mike is not currently treating him, Dr. Dave (as do we) values his opinion as his oncologist and former transplanter. They are confident they would be able to get him to engraft, but at what cost. The one advantage to GVH is GVL (graft vs. leukemia) which almost eliminates the leukemia from returning. We also have virtually no wait other than his conditioning. Dr. Dave told me that living with severe chronic GVH is a fate worse than death.
Option 2- Use mommy (me) as the donor
After looking at my initial labs it was determined that I am actually an 8/10 match. Evan and I share may of the same proteins which is an advantage. There is also very compelling data from Italy with Haplo (half matches ie parents/siblings) Mother and Father donors. For some reason, using a Mother yields the highest positive outcomes. I have seen the paper and it is impressive. With using me he will most likely not get GVH (very, very small chance) and in turn no GVL. He will be at a very high risk for viral infections for at least 6 months (much higher than if we used the original donor) and his relapse rate is higher. He would then require TLI (Total Lymphoid Irradiation) in addition to the chemo drugs. I would receive GCSF (immune booster) prior to my collection which potentially will make me feel like a bad case of the flu. I would also need a line placed in my neck as my veins don't always like to cooperate.
I am sure you noticed that our biggest (his medical team as well) concern is now his survival. With both options, it is still very possible that he is not going to make it. We are unable to predict what could happen and must make the best decision based on the data. They wanted to make sure I would get the necessary medical clearance so I had labs, a chest x-ray and a physical done by the physician they use for donors.
This morning Dr. Dave and I called Chris to go over the data again in order to make ther big decision. It became clear to all of us after the call that the best option for Evan is using his mommy as the donor. I have been cleared by Dr. Sobczak (the physician I will be seeing through this process) and we are moving forward. I have signed all the consent forms and they are currently putting in all of the orders.
Evan will have a 12 day conditioning regimen starting tomorrow. He will have the TLI on Day-2 and -1. I will begin my shots next week. On Dec. 16th I will go to Froedtert to have my line placed and be collected. I may need to be collected again on the 17th but that will depend on the amount of cells they are able to get the first time. Evan will get his new cells on the 17th and again on the 18th if I need a second collection.
I know I have just thrown a TON at you, that is only a glimpse of the past few days. We have made the decision and now must focus on the prize! I know that many of you want to come up and see us, but at this time we are not allowing anyone (even if you have received your flu shot) to come. I know this is hard and we miss you all so much this is now about Evan's chance to survive. We hope that you are able to understand that this is a hard decision to make, however, we have come too far for a cold to wipe him out. The holidays make this even harder, but there will be plenty of days in the future once he is over this.
Before I end this I wanted to make sure you all knew that we moved rooms again. We are now right next door in room E585 and the new direct number is 414-607-5145. Dr. Dave wanted us in a new BMT cleaned room and since the room right next to us opened up it worked well. I finished moving stuff last night about 11:30, thus the lack of update. We are also moving rooms at RMH to the 3rd floor of the Long Term Stay. We are very excited to be on a floor with all BMT families (there are only 5 rooms total up there and we all are the only ones to us our kitchen) who we have become good friends with. I hope you all still like us after Ian invades!!!
Thank you for your continued thoughts and prayers as we take another fork in our journey. God Bless.