A Mac update
We are in the process of making a video of Mac and all of his daily activities. This is just one clip! So look for the full video soon!
I thought I would do a little update on Mac. Even though we’ve been at this for over 6 months now, our daily activities and routines must be confusing because people are always asking. 🙂 Everyday, no matter what, Mac takes his oral chemo pill. He does one in the morning one in the evening. He takes it sandwiched in two bites of a brown cinnamon and sugar pop-tart. It’s pretty gross having to watch him chew that chemo pill. He usually gags and it leaves his mouth all white. He also takes liquid ibuprofen twice a day, every day. His chemo causes inflammation and joint pain so that’s what the ibuprofen is for. He also takes a liquid med once a day for nerve pain. It’s the worst tasting of the liquid meds. At least that’s what Mac’s face says. A side effect of that med is moodiness. We used to give him an anti-nausea med everyday but one day when we picked it up from the pharmacy, they were really concerned that he was taking that in conjunction with his vemurafenib (his chemo pill). That combo can be really bad for his heart. That’s why they do an EKG every couple of months. He also does chemotherapy through his port every Tuesday. He does 3 weeks on, one week off, press repeat. Those 3 weeks on, we are in CO. We live in Longmont with my dad and step-mom. Sometimes on that week off, we go back to UT because we still own our home there. Mac also does physical, occupational, and speech therapy. One of the comments I get the most is, “Well, he looks great!”. Even though I understand the good intentions, it frustrates me. He is going through so much and sometimes I think that because he’s not laid up in bed, throwing up, he doesn’t get the credit he deserves for all he does.
He’s worked really hard doing all three therapies every single week. The program he did with his cast was really successful. I was really impressed with Allison, the occupational therapist. We also worked really hard at home. He’ll do another forced use program with his cast in a couple months. The function of his left arm and hand are still not what they could be. The physical therapist, Kristin, is also wonderful! Mac really loves her. She’s been a great blessing to him. Mac loves to have fun and she totally commits and they have so much fun together. They walk like penguins on their heels, like giraffes on their toes, and gallop down the hall like bullseye 🙂 She recommended braces for Mac’s feet that would help him keep good muscle tone and promote a proper gait. The IV chemo can affect the muscles in his legs. We just picked up the braces this week but they don’t fit in his shoes so we’re still working on it. I think he’s supposed to wear them 5 or so hours a day.
I think with losing Rex, I never got to tell everyone that they are doing full genome sequencing on Mac. They got blood from Mac, Jeremy and myself and will sequence us as a trio. They’ve done a lot of genetic testing already but everything has come back “unremarkable” as they call it, meaning no explanations. The odds of him having one childhood cancer before age 3 is extremely rare. Additionally, AML is the more rare type of leukemia. Then to have a second, unrelated cancer- brain cancer, all under age 3 is unheard of. That’s not to mention that they’ve never seen a tumor like this. The truth is that there is very limited information on using these chemotherapies together to treat brain tumors. Those genome results will be back in February sometime. It’s a big project. It is a very unique opportunity for them to do research on such a rare situation. Research is so important to us and we’re glad they are doing this even though it will probably be for the greater good, rather than for Mac. We believe there must be reasons for Mac going through all of this and if it can help someone else in the future that would be great.
Digging so deep into our genetics may pose ethical dilemmas of exposing things unrelated to Mac’s cancer. The genetic counselor thinks it’s most likely that it WON’T provide any answers that they would know how to act upon related to his cancers. But there is the possibility that these tests will reveal something about any of the three of us that is UNRELATED. We had to decide if those were things we would want to know. Took me back to my ethics class in college. All very interesting.
It’s such a crazy lifestyle- living here and there, trying to manage so many different symptoms and side effects and causing other ones in the process, wondering about his future, fearing that it may not be safe to be far from the best of care. When he got a little over a year off of therapy for his leukemia, it felt like it was in the past. I don’t think this is something that goes into the past. The rarity of the situation lends to a lot of uncertainty for the future. If his scans continue to be good, he’ll continue what he’s doing until August. Then they’ll take him off the chemo and see what happens. I have no idea how to parent such a sweet boy who is dealing with so so much. I lay with him every night and sometimes all I can do is plead with Heavenly Father that we won’t lose him.
I will leave you with this. Nothing is guaranteed. Enjoy your days and be kind. Last Sunday was Mac’s first day of sunbeams at church! It’s when the 3 year olds graduate from nursery and go to sunday school. I was so excited for him! He was of course unsure because he can’t process a lot of stimulus or new experiences very well. That’s from his tumor and surgeries and probably all that is asked of him on a daily basis. I stayed with him to sing songs and he really did enjoy it. After the first hour, they switch rooms with the big kids and as we were walking out, an older kid looked at his head, pointed and shouted, “He looks funny”. I looked at him and kindly said, “He looks what?” In pure terror, his eyes got huge and he stuttered and changed his words to, “He looks like a nice boy”. I dropped Mac off at his classroom and couldn’t help but to go ball my eyes out. I was devastated that Mac does so much more than any of us could dream of doing and that sometimes, he’s going to be greeted with ridicule. I guess I plead that next time you see someone with eyes that don’t line up right, or maybe they are gimping or they just don’t function how you do, that you’ll open your heart and radiate love. See them as a child of God, show them kindness and teach your children to do the same.
If you want more frequent updates on Mac, you can follow me on Facebook (Brittny Rogers or Jeremy Rogers) or on instagram @brittnysue
TEAM MAC STRONG!