It's been a while...

I've come back here so many times over the last few months but never managed to sign in and update. So many things have changed and yet so much is still right where I left off in October. Line infection after line infection; illness after illness.
Then something happened yesterday morning that made me come running here to organize my thoughts. Tomas was pretty cranky most of the night and was still sleeping hard at 8am, so I cancelled his 8:45 therapy session and let him sleep. When he finally woke up, he the girls and I sat on his bedroom floor playing. After several rousing rounds of "Itsy bitsy spider", I looked at all three of them sitting there wrapped in the pure joy of being together and I was so grateful for homeschooling and the lazy mornings it affords us. But my very next thought made me tremble and I had to shove it away in order to keep from sobbing. Will this morning be one of my most precious memories one day?
In the last two weeks Tomas' mortality has loomed large. Not because anything acute is happening or because anything new and heavy has come our way, but because the chronic-ness of being Tomas is taking its toll. He saw 3 secialists last week and all of them want to trial new meds, all of which have potentially large side effects. Hematology is the one that brought the biggest.
The GI doctor approached hem/onc asking her to do something about his neutropenia in order to help Tomas fight the line infections, or better yet, to keep from getting so many. Initially she said no, the treatment for neutropenia is a growth hormone injection. It has been linked to leukemia. In the past various doctors have told me they would only use the med on Tomas if "our backs were against the wall", or "as a last resort". GI came back, presumeably after this last infection in January, asking again. This time the oncologist wanted to know if Tomas was really getting more line infections then their average patient. GI's answer was an adamant yes, so she agreed to do a 3 month trial if my husband and I approved.
I always imagined the tough decisions centering around DNRs and healthcare directives; discussions with a palliative care team, hospice care - that sort of thing. I certainly didn't see this one coming. I went into the appt. expecting it to be just his regular old oncology follow up, instead I was hit with this huge discussion on how dangerous a place Tomas is in right now.
At this point he is getting line infections every 4-6 weeks. Mike and I have wondered how long his little body could continue fighting at that pace. The dr. confirmed that was GIs thinking and why he was pushing for action and that was the ONLY reason she had agreed to do the trial. The shots do boost neutrophil count, but patients with congenital neutropenia have transistioned to AML (actue myeloid leukemia). The particular type of cancer Tomas is already at risk for. His current risk level is 25-33%, depending on what studies you read. Adding in the neupogen puts us in uncharted waters. The oncologist also told me that she did not think Tomas would fare well against leukemia, that he has too many other issues going on to effectively fight it. This was particualarly depressing because I had always banked on the Down syndrome superstar in him to pull through if he ever did transition. She said normally DS darlings do very well, and they (as a group) have an astronomical recovery rate of 98%. I know of some families that fell into the 2% group so I was not oblivious, but again it was the odds I was banking on. They're gone now, a safety net disappeared; whether we start the neupogen or not.
So this was the choice given to my husband and I: Do nothing - he may or may not continue to get line infections while we attempt to get him off tpn; should he continue to get them, they may or may not kill him. Do a 3 month trial of the neupogen - he may or may not transition to leukemia; should he transition, it may or may not kill him.

After asking many opinions we decided to go forward with the injections. The idea is if he gets a line infection during the 3 months trial then we stop the shots immediately because they are not helping and therefor not worth the risk. If he is infection free, then we face another tough decision, continually weighing the risk/benefit.

Tomas goes in for a baseline bone marrow biopsy next Thursday and then we start from there. And that flashes me back/forward to the morning on the floor. I want to forget it, I want to have so many more mornings like it that the commonness of it pushes it away from my memory banks, makes it be mundaine and forgetable.

But Lord, if I don't get 1000 more like it, thank you for that 1. Thank you for that sun shining, heart music singing, face hurting smiling morning from Heaven.