Update

So yesterday we got a little over a million stem cells per kilo even with the new drug. This puts our grand total at just over 6 million per kilo, the bare minimum you need is 2 million per kilo per cycle or 6 million for all three. After talking with Dr. G. We all came to the conclusion that the risk reward of continued retrievals was not worth it, and decided to go forward with the bare minimum. Casey and I also talked and decided to wait until Monday to start high dose. The only thing that was making us consider Thursday, is all these delays are delaying my return to work which is causing me a ton of anxiety, but at the end of the day it is only a couple of days and the mental benefit of Connor getting a week off and all of us getting one last weekend together far outweighs any anxiety I am having.

As for other updates, the new drug we tried is the one that is only approved for adults because in Japan it caused nightmares in some children, but never in the US. Well there is always a first and Connor was that person, the night before the retrieval neither of us slept because of his “nightmares” and last night we all got to wake up at 5 am because of his “nightmares”. Good news is he got a very small dose and this will hopefully be temporary.

We also will be finding out more about the chemo when we have a conference call with Dr. G. later this week and also about how things can be sent to the hospital since a lot of people are asking. What I know so far is they can sanitize plastic toys so we are hoping to bring a small plastic kitchen from Aunt Allyson, the majority of the toys from my sisters friend and my parents are getting him a radio flyer car I got approved to bring. I worked on a wish list with our OT on Amazon and will make that public once I have the rules. I also need to find out if we can bring books or have to buy new and the rules on food, we are trying to get a fridge in the room since I can only leave it if Connor is with one of his grandparents or Casey.

Lastly, on the medical front, I pushed Dr. G. A bit yesterday on the tumors responsiveness to chemo from the lab tests because before we undertake this horrible step I wanted to make sure the sacrifice was worth it. Basically there was response it just did not melt away, like some rhabdo’s do in other parts of the body, it showed some death and it did shrink, so she thinks with minimal to no disease this is absolutely the right next step and I now completely agree, and feel encouraged, good news from lots of directions, I just hope this is the trajectory our lives will now take, it has been a very rough 7 months, but if Connor is going to be okay at the end of this it is all worth it!

Now some pictures!

Hanging with his cousins for the last time until Christmas (they go to school so once we start he can’t see them, add that to baths in favorite things taken away from Con):

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Mickey with Claire!

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Hard to go inside Chimney Rock when there is a car to hang in outside!

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Stem cells in the morning, motorcycle in the afternoon, SuperCon!

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And last but not least, Super Claire is starting school on Thursday, to say this is a miracle is an understatement. This little chick who got down to well under 1.5 pounds and no one thought would make it the first 72 hours, not only made it, but is thriving and going to a normal nursery schools with her peers on time! Sure she may not be as verbal, but she has so many unique skills and I can’t wait to watch her grow this year, she got to go see her classroom today and meet her teacher! Watching her today gives me so much hope for Connor, miracles happen everyday, and today I witnessed one!

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