Day 28 was eventful in that Dillon received his bone marrow biopsy and aspirate. Everyone in transplant gets this done on day 28. There are 2 things they are looking for: One is, is there any cancer in the bone marrow (there better not be!!!) and two is, what is the percentage of donor cells versus the percentage of his old cells in the bone marrow. The "goal" or hope is that it is above 90% donor cells...sometimes it is even 100% donor cells. Sometimes, however, it can be 50/50 donor and old. If that is the case, he will get another bone marrow biopsy done in a month and they just watch and make sure the percentage of donor cells is going up. I did not even ask what happens if the donor cell count does not go up...in other words, the old cells are taking over....I don't feel a need to know that because in my soul I feel confident that Dillon is going to be on the higher side of donor cells.
Dillon was very nervous and nauseous prior to the 3 p.m. bone marrow biopsy, and then afterwards he was just wiped out and slept most of the afternoon. Most other symptoms continue to dissipate slowly.
ANC was 3740
Today is day 29. I have a list of improvements that are happening that I wanted to share. They add up to Dillon doing quite a bit better....even though if you asked him he would tell you everything is the same. The doctors and nurses and I see the changes!!! Here are a few that I remember in the last couple of days.
* This morning..."Mom, can you hand me my water?" First time he has held his own cup in a month.
* Yesterday morning...."Mom, I think I can do my own shower today." First time in a month that he has had the strength to scrub his own body.
* Yesterday morning...."Nana, I feel like a popsicle...do we have any?" First time HE asked for anything to eat in weeks. The miniscule things he has eaten before have all been "forced" on him by me or some other caregiver :)
* This morning, after scowling at the doctor for suggesting he get up and sit in the chair...."Mom, can you get the
chair ready, I am going to sit there for a while....leave it where it is, I will walk over there." AND after getting to
the chair he asked me to turn the TV so he could see it to watch cartoons....again, his suggestion, not mine.
* Last night, even though very tired, he agreed to talk with his Dad on the phone.
Now a list of the medical stuff that has changed/improved....some of which are quite significant.....
>The HHV-6 virus test from Monday morning is now NEGATIVE. The meds and Dillon's system have cleared the virus completely. He will remain on the medication once a day for another week or so and then twice a week for a week or so just to be sure it does not come back. This is an IV med but we can get it in the clinic as an outpatient if we get discharged before he completes the entire course.
>The Torovirus that was in his stool for the past month has cleared....negative test on Monday.
>His ANC is such that they have stopped a very strong medication that is used to help his body raise the counts....the expectation is that the counts will drop a bit over the next few days as his body takes over the production unaided by this medication.
> The abscess on his backside has improved a ton the last couple of days with the white cells really beginning to function in his system.
>His diarrhea is resolving. He was not up at all overnight, whereas a few days ago he was up 4 or 5 times to use the bathroom.
>Today they change over the last medication from IV to oral that he will need to have at home....so all of his discharge meds are oral for going home and he is able to take them and keep them down already.
OKAY...that is all I can think of right now.
Day 29 ANC 3126 ( slight drop because of stopping the medication that helps his body manufacture white cells)
Now for a little excitement......the doctors said it is in their minds and their scheduling plans to get Dillon discharge by Thursday of next week (barring any unforeseen bumps in the road, of course).
It has been a long time since I posted a photo....check out the art work on Big D's head.....
Shari, this is all such great news. Like you say, D might not see the improvements but YOU do and that's so important. Those long roads of recovery take place in small increments at first and the before you know it, you're there....
ReplyDeleteOne question I had was this: when you say discharged from the hospital does that mean to go to the apartment there in Colorado? Or all the way home to NM? Mom and I disagree on the topic do I thought I'd ask :-)
Sounds like the pendulum is swinging to the Better right now!!! Big hugs to you all and a high 5 to D.
Thanks for the comment Jennifer. I am so curious about which side of the discharge "disagreement you are on with your mom.,hahaha. So, to settle that.....we will be discharged to the apartment where we will remain until at least the end of December but maybe even into January. During that time at the apartment Dillon will have visits to the oncology clinic several times a week for labs and transfusions and things...which will decrease in frequency the further out we get. Hope that helps. It means a lot to me that you have been following and sending notes!!! We have never really been involved in each others lives...maybe this is one of the blessings we get out if this journey..a closer extended family.
ReplyDeleteHoly goodness I am so happy to here all these great things. I am just a little blown away with all those positive things. My fingers are crossed for more good news and growing of healthyness for Big D Pickle. Miel is rather fond of Dillon and makes a point of spellin his nick nme every chance she gets. D_I_L_L_P_I_C_K_L_E. LOL. t
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