Sunday, May 19, 2013

A Very Long Week

On Friday May 10th Mia got out of the hospital.  We went in with 7 medications and came home with 12, 3 of which are IV medicines.  I decided the best thing to do would be to set an alarm on my phone for each time I needed to do something with her medicine.  I start at 5:30 am and get finished just after midnight.  I think I have 15 alarms reminding me to do give medicine!  That first day or two I sure missed the hospital nurses!

On Monday we returned to the clinic to start our new cancer therapy, romedepsin.  Unfortunately there was some issue with the insurance coverage so we had to wait.  while we were there we spoke with Dr. Hansen about her low platelet counts.  On that day they were at a 3.  He let me know that I should indeed be somewhat concerned about it.  The two major concerns are bleeding in the brain and in the GI tract.  Bleeding in the brain is bad for obvious reasons and bleeding in the GI tract is bad because you can lose a lot of blood in a short amount of time.  Platelet transfusions are not very effective because the transfused platelets only last for a few days in your system.  Unfortunately in Mia's case they don't make much difference at all because her spleen traps most of them.  We ended up doing a platelet transfusion to see if it might help at all.  That appointment was about 7 hours.

On Tuesday afternoon I took Andrew, Heidi, and Jessica to have their blood drawn to see if they could be matches for Mia should she be able to have a bone marrow transplant.  Andrew and Heidi were both a little squeamish about it, but Jessica sat and watched the whole thing and thought it was great!.  On our way home the lab called to say that the blood may have been mislabeled and to be on the safe side they wanted to redraw everyone.  Fun for them:)

On Wednesday Mia and I were once again at the clinic.  This time we were able to start her new cancer therapy since the insurance issue was cleared up.  Pretty easy infusion.  We were only there for about 7 hours.  We also checked her counts and her platelets were only at a 4.  The platelet transfusion did not have any long term benefit.  The doctors want to stay away from transfusions  because she may be getting a transplant and the more transfusions she has can increase the number of antigens in her blood and make the transplant harder.

On Thursday we were back at the clinic to get an IVIG infusion.  This was supposed to be a relatively short appointment, only 4-5 hours. (When did I start to consider a 4-5 hour appointment short?)  The IVIG went well but Mia started complaining that her groin hurt and then she threw up.   So a CBC was done and her hemoglobin was low, 7, so we decided she need a red blood cell transfusion. What was supposed to be a short appointment turned into ten hours.  Because I thought it would be quick I took Jessica with me.  It is very hard for an active 5 year old to cooped up like that for 10 hours but she did pretty good with only a few minor temper tantrums.

So it was a long week.  Next week we have to see the doctor on Monday and then do treatment again on Wednesday.  They are watching her potassium and magnesium levels very closely as the new medicine can cause unsafe drops.  She was low when she started so she is also on potassium.  Because of her constant nausea she is also on zofran.  She has not eaten well the last couple of days and I think she may have lost a little weight.  She is also not drinking and will probably need some IV fluids to get her hydrated.  I can lonly get her to drink so much.


  1. Our prayers have been with you Mia, Jennifer and Kacey. We are thinking about you and hope things get better!

  2. Hang in there! We're praying for you.