MRD = 0

Well, today was a big day! We had a big ask of ZERO leukemia cells on this biopsy…..and that was exactly what we got!!!! Which means, Gus stays in the “favorable risk” category. We could not be more happy. Now, he could have still been in that category with a small number of cells, but we shot for the moon and lassoed it.

What’s next? Glad you asked. He will start the next phase of chemo (consolidation) on Tuesday, 12/12. We will have three weeks straight of weekly spinal taps, intrathecal chemo as well as some IV chemo and oral chemo as well. That phase will be another 28 day course total. The overall treatment will still be a little more than two more years, but he is able to take far fewer drugs and has the most favorable prognosis we could ask for.

Everyone was all smiles and cheers with us today – and it is such a good feeling knowing that so many more people than just us are overjoyed with his results. He still has a long road ahead and we will have periods of low counts and having to be extra careful, but as of today, his counts are those of a non-cancer kid and we can enjoy some company for a while.

WAYS TO HELP

I don’t think I’ll ever NOT be blown away with the amount of love that gets extended to our family each time we have crazy going on. I have kept Gus’s wishlist updated (at this rate Santa won’t have much shopping to do!) but our little house can only hold so many toys, soooooo I figured it was about time to share something with everyone.

Those of you who have been with me from the beginning may remember the drama surrounding me getting Proton Therapy radiation with my breast cancer. We and my doctors agreed this was the best course of action for me with my cancer being left sided. Blue Cross did not agree and we had to pay out of pocket for that. I fought them for two years and finally had the decision overturned through a third party appeal. We were refunded everything we had paid up to that point. We didn’t feel right just putting the money into our personal savings, so we opened a special trust account to put that money in – and it was the perfect timing as far as the market goes, right at the beginning of Covid. The idea is that we let the account grow and never touch the principle. We are able to use the interest it makes each year to help other families going through cancer – and we have been able to do that several times already.

So, seeing as I guess God is going to make sure I stay involved in the oncology community, we will finally share about this fund and let others contribute to it. I don’t have a formal non-profit status yet and have been just reaching out to families I hear of word of mouth. And of course, if there comes a time either Gus or I need the money for medical bills, we would use it (since that was the original intent for those dollars), but I hope we never do. SO……if you want to do something and think “man, they are probably overrun with toys by now,” you are more than welcome to contribute to this fund. I have PayPal, Venmo, and Zelle.

And last, but certainly not least, about all the gifts…..there have been so many I am sure I have forgotten to send thank yous to most of you! Gas cards, grocery cards, food gift cards, Amazon gift cards, and more. You all are amazing. We have gotten cards from people and churches I’ve never heard of before. It is truly humbling. We all feel so loved.

I’ll keep you all posted on Gus’s progress, but I think the forecast for this weekend includes baking lots of Christmas goodies and watching all the fun Christmas shows.

Love,

Lesley and crew