We’ve made it. And to be honest, the med list is a little overwhelming since it drastically increased.  The goal is to have his chemo dosing dialed in to keep his ANC in a specific range - not too high and not too low. He will be receiving chemo by mouth every day until he finishes his treatment. 

In addition to this daily oral chemo (6MP), he will receive a weekly chemo (methotrexate, or MTX). Once per 3 month cycle he’ll undergo a lumbar puncture and receive spinal chemo and IV chemo, and will do a five day course of steroids (this marks the start/restart of each 84 day cycle). This will repeat until he completes treatment in the latter part of 2025. 

During this time we will only have monthly oncology visits! However, any fever still means the ER and we need to watch all illness more closely than a typical kid not receiving chemotherapy.  If his counts remain in the window we want through this first month, the thought is that we should be able to safely venture out with Jax…and there is hope for preschool etc. this coming year.  We will still avoid illness whenever we can, but our bubble that we’ve been living in since August shouldn’t be needed.

Jaxson tolerated today well. He was a champ for port access, but was extremely grumpy after anesthesia - which has been the case the last three lumbar punctures. I’m hoping that having “off” from anesthesia and LPs until July helps… 

Counts were good: hgb 11.5, plt 339, wbc 3.2, anc 1960.  He does have mild cold symptoms right now, which started on Sunday, but still no temp and I’m thankful for that. His energy hasn’t been impacted much by his cold, though we’ll see what the next few days hold since he began chemo again. 

He was an utter champ for his meds tonight! He took his 6MP, decadron (steroid), Pepcid (to help protect his belly while taking the steroid), and his Bactrim (four time a week antibiotic that he has been, and will continue to take, throughout his entire treatment), without issue. I am hoping and praying that this is a trend that continues! 

Since his last update, nothing much has occurred. We’ve spent as much time outside as we can, and the boys LOVE it. They love playing in the yard, on their new playset, coloring with chalk, and just running around chasing each other or playing on the rocks. It is fun, and exhausting for pregnant me 😂 

Seeing how far Jaxson’s gross motor strength has come is so amazing and rewarding, though.   His skills continue to progress, and this week I am understanding/hearing more three word or more phrases from Jax. 

Travis’s recovery is going well - better than either of us expected in that he’s had minimal pain. He just can’t really do anything with his one arm. 

Noah is silly, helpful, and has a lot to say (though with few consonants so he’s difficult to understand). He will have a speech eval coming up. 

Baby is doing well and measuring right where we expect. I will be 30 weeks pregnant on Friday, and I can’t believe how quickly the time has gone.  The significant hip and back pain has improved, though flares on days where I might have to carry the boys more. Today I really noticed not being able to carry/hold Jaxson like I used to - even as recently as the last oncology visit. Thankfully, the boys are seeming to understand that more, and it’s forced us to push jaxson to be more “independent” with things like dressing, which is good. 

Jaxson has been approved for private duty nursing to assist with limiting chemo exposure for baby and help with ADLs, but start date is entirely unknown at this point. 

Thank you all for your continued prayers! Here is to hoping for a low-key month with no illness, no blood count concerns or extra clinic visits, and smooth sailing with everything!