Thursday, December 3, 2009

Post Clinic Questions

We all enjoyed an amazing Thanksgiving with family and friends. Sam was the star of the show to an extent but our new baby cousin was introduced and Jack, just by being himself, won over the hearts of the crowd. Cousin A was also there with his two year old ways...mostly providing adorable entertainment. It was a day of family and children being children....normal.
Sam did not get his second cycle of chemo last week as his blood counts were too low. Now the doctors look at his ANC which was 500 and his Mono count which was 200. Together they only made a count of 700 - much too low for treatment. Thus, Sam felt more like his old self...I loved it.

Today was clinic day and the counts came back high enough for chemo to resume. Sam did well with the finger prick, accessing the port with the needle and having the intramuscular injection (ouch!) He cries but recovers so much more quickly. When asked which he hated the most, Sam replied, "The medicine..I hate it and I am so scared of throwing up." Amazing what creates the biggest roadblocks for children. It is such a great fear, I am not sure we are ever going to get him to speed will be tough.
Brian was, as usual, excellent in forwarding my questions and returning with answers. I still (being me) had the need to clarify some things. I called but did not get a full answer so below is my email to the "big man" Dr. Cole who is lovely but very hard to get hold of.

Hello Dr. Cole,
I hope you don't mind me emailing you a couple of questions, I know you are very busy and my phone message may not have got to you.

1. I was told by Dr. Gill last week to keep Sam out of school if his ANC was less than 500. Today Brian was told Sam can go to school with an ANC of 400. I am very confused by the conflicting information we are receiving each time we see different doctors. I know you feel school is the way to go, but why is there a 500 count benchmark? It is also the season of sickness and I am worried. Will the steroids drive his ANC up a bit by Tuesday? If so, will it be false numbers so his immune system will still be vulnerable.

2. I looked over the new schedule for meds this cycle and noticed that Sam is going from 1.5mg of dexamethasone 2x daily all the way up to 7.5mg 2x daily. We couldn't actually find a pharmacy that could fill the prescription until one just created 3 bottles of different mg's which added up to 7.5. Is there a reason Sam had had to make this large leap? We were told he was going to be on lower doses now and yet this is so much higher. This also increases chance of side effects I am sure.

So, rather than do the nutty mom research, I am asking you to clarify. I appreciate you letting me know...I am sure there is a reason and that also worries's a big change. Brian is sure you will calm me down.
I hope you had a wonderful Thanksgiving. We did, taking your advice and letting Sam just go and enjoy himself...many smiles all round. In fact I was the one who caught a virus!
Katy Zweig

I will let you know the response to this. We're going with the plan for school as Sam may get higher counts due to the steroids...especially at this high dose. My very good friend and mother of a Leukemia survivor constantly reminds me to check everything. She is my mentor and someone I don't think I could get through this without. We have literally gone though the exact same thing with the same T-cell ALL and the same hospital and doctors.

1 comment:

  1. Wow, you are starting school! That's a step..
    I feel for you, it sucks to have to wait for the answers...


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