Well. It's been a while - and A LOT has happened.  And the more that happened the more overwhelming it felt to make a new update, hence the months-long update hiatus. But a lot of you have reached out asking for updates and I know people care, so here's a mega update on Mack's last few months. 

We last left you with an update on Mack's birthday trip to Six Flags during his break between finishing Radiation and starting chemo.  During that break, we expected Mack's nausea and vomiting to calm down...

In the weeks leading up to his first chemo treatment, his nausea and vomiting shot through the roof.  Every bite of food was a struggle and by the time we got to the hospital for chemo on November 3rd, Mack had lost a total of 17.3 pounds from his starting weight in July - almost 16% of his body weight. 

With the combined factors of malnutrition, chemo, and all the stress associated with it, that hospital stay was harrowing. It was 4 days, Mack was miserable, and any little inconvenience was enough to send him into a meltdown. 

The next few weekly oncology visits saw Mack's health further deteriorate - he lost more weight, his struggled with sleep, was sleepy constantly, could barely get up a flight of stairs without gasping for breath, and by mid November, we spent a day in the hospital for a blood transfusion. At the same time, we made the decision to get a feeding tube inserted to make sure he'll get adequate nutrition...but it had to wait until his White Blood Cell and Hemoglobin levels were back up to a point that his little body could handle the surgery. 

Dr. Chien (our neuroncologist) had a theory that Mack was in a viscious cycle where malnutrition led to trouble sleeping, which made the nausea and vomiting worse, which meant more malnutrition, more trouble sleeping more nausea and vomiting, etc. etc. etc. 

Knowing that there was some light at the end of the food struggle tunnel, Mack rallied and was an absolute CHAMP at eating despite terrible nausea, vomiting, and the stress that comes along with it. He knew he needed to do it and he did so well, that we were able to get the feeding tube done before his next chemo session with NO DELAY in treatment!

(Side note, delaying treatment is one of the major risk factors in whether or not the treatment will be successful. Decades of research from all over the world on kids with Medulloblastoma has resulted in a very clear regimen of radiation and chemo that has an extremely high success rate.)

On December 9, Mack had the procedure to insert a feeding tube - specifically, a Gastrojejunal (GJ) tube. This is a small port inserted into his stomach through his abdominal wall with one tube that goes to his stomach and second that bypasses his stomach and goes straight to his small intestines.  

Within 24 hours of the procedure we were able to start giving him 50% of his daily nutrition needs through tube feedings overnight. It comes in little containers like a protein shake, it's bright orange, and Mack refers to it as his "Lobster Bisque."

NOTHING is going to stop this kid from cracking jokes!

The GJ tube has been a MASSIVE success!  And Dr. Chien was right.  Getting the nutrition he needs means that Mack's sleep has been much better, nausea and vomiting is much better controlled with the medications he's on, and he is eating more everyday than we've seen him eat since before his diagnosis in July. 

Chemo #2 (the week of Dec. 16) was a completely different experience.  Going in having had adequate food and sleep, he was in good spirits and we were in and out in 36 hours - as opposed to 4+ days for the first session. 

Now, Mack's weight is slowly creeping back up, his sleep is better, his energy levels are better, and he even dressed up as Santa for his 12/23 oncology appointment and had his elf (mom) make treats for him to pass out to everyone at the hospital - security guards, front desks staff, doctors, nurses, and anyone else he interacted with got treats!
We really feel like we turned a corner and can give this cancer the boot in 2026!

One of the things we learned in our last few hospital stays is how significant the therapy dogs are for Mack's mood and ability to destress amid some of the most stressful things in the world. So Heather has been investigating how to get a therapy dog for Mack to help him through the rest of this fight - stay tuned for an update there :)