Halloween, Mouth Sores & A Hospital Stay

Let’s start with FUN stuff first!! The girls always do a themed Halloween and this year was no exception. They went as Pumba & Timon. Vinny is never left out either (not by his choice) and went as Simba – he was thrilled!

Brax also got some baking in. She’s still on a baking kick and did themed cupcakes for the neighbor’s party. They turned out awesome!

But…….since Halloween until this past Sunday, it’s been a bit of an adventure, so we apologize for the delay in posting, but you will see why below…..

After Brax’s last treatment on Oct 29th, she didn’t feel like she normally does after a treatment, but we had nothing to go off of other than it’s been a long 9 months and it may just be wearing on her. By Friday, Nov 1st, however, she started to develop mouth sores. We have heard about others getting these (and quite bad), but Brax had not experienced these to any significant degree thus far. She has had a couple very small ones throughout treatment, but nothing worth noting. That was not the case after this last treatment. She got them and they were extreme. She started to get them on her lower lip, under the tongue, inside the cheeks and in her throat. This was the worst week of treatment she has had since shortly after being diagnosed in regards to the pain and discomfort. Due the severity of the sores and her counts going from a normal range to a rock bottom ANC of ZERO in matter of days, they admitted us back to the hospital last Tuesday the 5th. They immediately put her on antibiotics and started testing for bacterial infections. With counts dropping as fast as they did, they assume it was caused by the body’s response to the sores, but also were thinking there was some other contributing factor. Thankfully all bacterial infection results came back negative, but they wanted to check for fungal infections. Just hearing the words “fungal infection” was both hard and scary for us as we know a family in a similar situation who had a very hard go with a fungal infection – to the point they thought they may lose their child – so it was nothing we took lightly. Thankfully, for that family, their child made a full recovery after 2+ months in the hospital and thankfully for us those test results all came back negative as well and counts slowly started to rebound near the end of last week. We received the option to be discharged on Saturday or Sunday, but due to the intense pain of the sores, Brax opted for one more night in the hospital to receive the extra care. By Sunday she was feeling better and we got home early that morning. Not a fun week, but we WON!

And as some background, we did ask why this happened as Brax has responded very well to the Methotrexate for the last 9 months, so we thought we were in the clear. They told us during Interim Maintenance II they gradually increase each dose of Methotrexate as the patient progresses through this phase, if they are A) tolerating it well and B) other chemistry numbers are reporting good. Ideally the more they can give the better the outcome and the bigger the “punch” so it’s all part of the protocol. And Brax fell into this category, however, they hit her “breaking” point this last round and it will be scaled back moving forward.

We went back today for anticipated treatment since we missed last Thursday’s treatment. We were unsure if Brax would make counts today to proceed, but she did…..just barely. We needed an ANC of 500 (she was at 500) and platelets of 50 (she was 52) – typical Brax fashion! So, after consulting with Dr. Sadak, he recommended we move forward with the IT chemo treatment (in her spine) and also continue with Vincristine IV chemo, but hold the Methotrexate treatment this week to allow the mouth sores to fully heal and keep Brax on track going forward. He said it’s much better to skip one now than get so knocked down we have to skip many in the future. We all agreed and everything went great today and Brax is feeling really good again after a “miserable” week last week, in her words.

The one bright spot of this past weekend was the Gopher’s Football WIN! Congrats guys on a monster win for the U and Minnesota!

Brax is busy in these upcoming weeks so we hope she continues to keep feeling good now that we have the mouth sores under control. This Friday is the U’s big Fashion Fest Fundraiser and both Brax and Bry were asked to model UNRL clothing. Brax will be a game time decision, but Bry is IN! Then on Saturday we have our 1st Flippin’ 5K hosted by TCT for TB1 Fund, with all proceeds going the fund. The weather looks good and we are hoping for a great turnout. It’s not too late to register if you haven’t. You can register by calling the gym 763-421-3046 or by filling out the registration form at the link below: www.tb1fund.org/downloads and emailing/faxing/hand delivering on Saturday.

Also, all of the TB1 Fund Donor gear is in! It turned out great and we are excited to get it out to all the donors. We are continuing to reach out to get sizing info, so if you have not heard from us, you will shortly. Thanks again to everyone for the continued prayers and support! It means the world!

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