Any day spent with you is my favorite day
It’s been some months without an update! There’s so much that goes on and to us, it’s our normal so I forget that even the people closest to us don’t know all that goes on. I guess the biggest family news is that we’re expecting a baby in January! I’m 22 weeks along and I am SO excited to say that it’s another boy! 🙂 It’s been a difficult pregnancy coming off of the loss of Rex. The 20 week ultrasound was good in that he is growing great, and has a heartbeat, but there was one thing they are concerned about so I’ll have an appointment with the high-risk office when we get back to CO. Just managing anxiety about that until then I guess. Right now we are back in UT and next week we are headed to Disneyland! A year ago we thought that Mac would be finished with chemo in August. We had told him back then that we would celebrate with a trip to Disneyland. Well, the time has come and gone and there is no end in sight for chemo so we figured we’ll take a few days and celebrate all that he’s gone through and the fact that he’s still here.
I can’t believe this journey with Mac’s brain cancer started well over a year ago. It’s so strange that we have experience with this cancer battle but because this isn’t a relapse of AML and it’s a whole new fight and the journey is completely different. Our past experience makes me more familiar with certain aspects of fighting pediatric cancer but it also skews my expectations. His leukemia treatment was hard and fast. As we literally lived every day in the hospital, Mac’s cancer was all that was ever on my mind. I understood his labs like I had been to nursing school and his battle was my everything. His leukemia was comparitivly straightforward. It didn’t lack scary times or stays in the PICU but it DID have a plan. Once they knew all the details of his diagnosis, they gave us a flow chart. It was a detailed roadmap that explained all the specific chemos, when he would take them and for how long. After 5 months of treatment and we walked out of the hospital to return to a life we didn’t really remember. He was in remission and cancer free. He did monthly blood work and it was a time to rebuild and re-establish our normal, helping him learn to do things a 1 year old boy should be doing. This time with his brain cancer, it’s completely different. It’s strange to realize that most people don’t have this contrast. Hopefully you don’t know any lifestyle with cancer but if you do, you don’t usually know 2.
The differences in these battles became apparent when they diagnosed him with a tumor they couldn’t classify as something they had seen before. To quote the doctors, it was a right thalamic mass revealed as a diffuse midline glioma (H3K27M and BRAF V600E mutant). The H3K27M mutation is a genetic mutation only seen in high-grade gliomas. It is my understanding that few, if any, kids with high-grade gliomas with this mutation survive more than months. What makes his tumor unique is that it is histologically more comparable to a low-grade tumor. This leaves us with no road map. Mac is making the road map. It’s taking a large team of very respected doctors to brainstorm his treatment plan. It’s sure not hard and fast. It’s painstakingly slow and uncertain. We live what I call a suitcase life. Here in Utah for a while so we can be at our house and so Jeremy can work, then back to CO where he is being treated. There’s never groceries when you get home. ( just rotten bananas I forgot to throw away) There’s heaps of laundry and our kids readjusting to a familiar yet different environment every month. It’s monthly 11 hour drives back and forth and a lot of miles and gas in our car. It’s not easy to explain nor I’m sure easy to understand. The best part is that he’s alive, that we’re together and we know our family is eternal. The worst part is living with the aching of constant uncertainty. Realizing that as it might seem somewhat “normal” from the outside, he is fighting cancer. We aren’t in a re-building stage and I’m not sure if/when that day will come.
So what’s on the horizon? His twice daily chemo continues and I swear if I don’t write to Poptarts soon I’m going to be so mad at myself. haha. They don’t have an end date for his chemo. I think as long as he tolerates it, they will continue to have him take it. Like I was saying, most tumors with this mutation don’t respond to treatment so they are really hesitant to give his tumor that chance to take over. He does an MRI every 3 months and the next one is in October. I’m always reminded of how nerve-racking those MRI’s are once they get closer. It’s a lot to think about all the possible news from an MRI. You’ll just be going about your day and then it hits you. Kind of paralyzes you. It usually happens to me when I’m laying with Mac at night. I know Jeremy has been brought to tears in the middle of running heavy equipment at work. The last news from his MRI was “slight growth”. I’m speaking off the record here, but I really have no clue if it’s growing or not. I know they aren’t going to change the treatment plan unless it grows more than 25% but it’s still the worst to hear. The next steps would be much more intense and potentially risky so they would want to be certain that it was something they had to do.
We went in for his 2 month follow-up from his eye surgery and they are better but still not totally right. His right eye has trouble looking up so as his eyes try hard to look up, it sends the left eye up way too high. That is also making it impossible for them to always track together. So, more eye surgery it is. He will do that in October with his MRI. His occupational therapist would like to do a couple more intense programs with him to help with the function of his left arm and hand so maybe we’ll be able to do that in a few months. This suitcase life makes everything difficult when it comes to scheduling and timing. I’m so proud of the boys though. They do so well on that gosh awful drive. They impress me with their ability to adapt to new beds and new schedules and different lifestyles. It’s all they know.
Thank you Team Mac for being strong for me so I can be strong for Mac. It’s the small things that really make a big difference. I was scheduling my appointment with the high-risk office and had to explain that our schedule is really difficult because my oldest son is fighting brain cancer and the sweet lady on the phone took the time to say, “wow, I’m so sorry to hear that”. You’d be surprised how often people don’t ask or acknowledge it. I think it’s that people don’t really know what to say. Heck, I don’t even really know what to say either but I ALWAYS appreciate when you ask or bring it up. It’s small things that mean so much. It’s Mac today at church when he spotted a Team Mac sticker on a car and he said, “hey! Team Mac. Let’s look for more!”. It the cutest book about a pink puppy sent to Mac. It’s a text from a new friend of mine asking how the appointments went. It’s my mom sending a bit of money in the mail. It’s the water bottles and t-shirts I see in your everyday posts. There has even been a couple people that found me on Instagram and reached out. One bought wristbands for her family of 4 and another person who sewed Mac a Captain America and sent it with a sweet note.
The question “How is Mac doing?” seems ever impossible for me to answer. If you only knew all the things that flash through my mind when I go to answer that. I always think, compared to what? Well I sure wish I didn’t have to feed him chemo every day. I wish he didn’t have cancer. I wish he wasn’t nauseous. I wish he could play out in the sun without getting blisters and burns. I’m scared of him dying. I live with the constant ache of knowing that his time is limited. But I’m glad he’s not laying in a hospital bed. I’m glad he laughs and runs around. I’m glad he can walk and swallow which were things that were on the line with his brain surgeries. I saw a post today that matches my sentiments and it said, “Any day spent with you is my favorite day, so today is my new favorite day”. That is how I know that there is life after death and that families are forever. The love I have for Mac and all my kids is beyond words. Even if we all live to be old and grey, I know it won’t be enough. Every day I am thankful to know that this life isn’t all there is. I kiss my boys’ warm lips every morning and every night and I pray I’ll have many many more days to do that.
Mac after eye surgery. He was seeing double.
This is Mac doing his online preschool since I had to take him out of the school across the street because he would miss too many days. He lines up his cars as an audience! 🙂