Tues, June 6 plus Asparaginase mixups

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Wil had a long afternoon at the clinic receiving his chemo. We are on day 19/28 and he is following the BFM (Berlin-Frankfurt-Munster) treatment plan for those that need more info. All results are low so we will be going back tomorrow. We are thankful for the nurses who have stayed late every time we have visited until Wil's vital signs improve so that he does not have to be admitted. If you love a nurse please hug them tonight from Wil!

We continue to be thankful for all the people in our lives. Sweet notes in the mail and surprises on our front porch Tara McMahon, Julie M Weik, Kathy Herbst Arnett Vicki Siering Kristine Michelle . I know that I can't keep up with them all right now, but Brandi has a list. Feel free to message or text me anytime if you need a virtual (((hug))) or more info.

Asparaginase 

We have had 2 really bad "hiccups" in Wil's treatment. The first time that Wil's asparaginase chemo medication was to be administered he was in the hospital. He was given the drug the two days late because we were told it was a computer mistake. The hospital staff was very apologetic, but still left us hurt and uncertain.

 Again on Monday we went into to receive treatment and the medication was not there, again. ONE mistake was enough to send me over the edge, to have the same issue two times was heart wrenching. Needless to say both Chris and I contacted everyone possible. We were still told that it was a computer issue, that medication is not filled on Friday by the whole sale distributor. BUT since this was already an issue a week back, you would think that the person in charge of ordering the medication would know this. We were also told that Mercy has discontinued their contract with this supplier as of October 2017, but I am still unable to understand how they still order from these people when lives are at stake. We are assured that the proper paperwork has been filed and that the board will review. I am still flabbergasted that this happened not only one, but twice. As I said many times, this diagnosis is still very new to us and our nerves/feelings are very, very raw. We cling to the treatment schedule, we prepare our son to be stuck with needles, we brace ourselves emotionally for the treatment and not once, but twice his medication is delayed. 

To reassure myself and others, I did consult 2 other oncologists and they say that as long as the medication was delivered in the 4-6 day window it will not take away from the effectiveness of the treatment plan. Berlin-Frankfurt-Munster (BFM). Still leaves a very anxious mom with little reassurance. Please, please let this medication treatment plan kill ALL the leukemia cells.