On Hold

So cycle 2 is a far cry from the “perfect” first cycle we had. To start the day Casey was late getting home, I was in a bad mood and unorganized , or on the island of denial that this was starting again, so we left later than planned, this ended up not mattering as when we got here his room was not ready, in fact they had us wait in the playroom which had us so nervous (my gut tells me he caught the flu in there his first cycle) , Grammy ran around wiping down any toy she thought might be slightly appealing to Con and poppy hand sanitized his hands every 30 seconds. Now the playroom was closed but I was still so nervous! Mid lunch, Connor threw up, then after some symptoms of diarrhea, really got it. At this point we don’t know what we are dealing with, an isolated incident of throwing up is fine, but the combination is worrisome. The only place Casey and I have not been super careful was at the Valerie Center for Con’s blood draw, I asked to be put in isolation, they refused, claiming everyone was healthy and the toys were cleaned daily in the playroom (I asked if any other children had used them that day after cleaning and got a very snark remark, insinuating I was crazy) and generally acted like I was a crazy person for requesting to be in isolation. There was no way I could prevent my 2 year old from playing with the toys so I let him, the nurse even condescendingly introduced me to the “lady” who cleans the toys. So, long story short we think Con has a stomach bug (which is a bit of relief because throwing up can be tumor progression and always in the back of my mind), but can not start chemo until we know what we are dealing with. So he is going to be monitored her on fluids overnight. This is problematic because high dose chemo is generally only started on Thursday, Friday, Saturday, Sunday or Monday. This is because you do two days of high dose chemo, two days of rest, then the transplant. Transplants should be done on a weekday, starting chemo tomorrow would put transplant day on a weekend, Dr.G has done them on weekends before (nurse said she remembers 2 times) and has not ruled it out, but you miss the weekday resources if you do it on a weekend and all that needs to be weighed into a decision. The plan is to monitor him with fluids tonight and make a decision in the morning, if we wait until Thursday then my dad will drive us home in the morning, we will see.

Here are some pics from today:

Helping Claire with her meds this am (hopefully she will not be the next to catch this!):


A surprise scarecrow from Jr. Heartworks that the twins are obsessed with!


Playing the drums with Poppy!


Enjoying his electronic devises and the view in the hallway:


Hugs from Grammy:



Cleaning and giving tubies a drink:


Being silly and imitating Grammy crossing her arms!



3 thoughts on “On Hold

  1. Praying it is a brief stomach bug. My blood boils thinking of those people not attempting to help keep Connor in isolation. You usually have snacks and an iPad so even a closet could work. If it was because of preemie lungs or some other reason maybe could accept their unwillingness to do more work. But he is in active treatment for Cancer. Grrrrrr. Erin you’ve learned how to fight harder and be more patient than most.

  2. I just love all the pictures of Connor……….he is such a silly boy. When you are feeling down think of all those silly things he does and it will put a smile on your face. What a wonderful personality he has.

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