Blogging about life and living it to the fullest. Pretend princess/mermaid. Actual basic southern millennial trophy wife.
Childhood Cancer

The One Where I Waited Way Too Long to Give Y’all an Update

Well, excuse my French, but shit, y’all.

It’s been awhile. Because the past couple of weeks have just been packed full of confusion and emotion. Where did I even leave off? I can’t remember, so I’ll start with the week of the tests.

Matt and I brought Reese with us to MUSC to get every kind of dang test to make sure he was ready for the next phase of treatment AKA intensive chemo and stem cell transplant. MIBG scan, CT scan, hearing test, kidney function test, EKG, echo, bone marrow biopsy… and the list goes on I’m sure. Once we were done, we got back to Columbia. To pack. To spend some time with Cole. To wait for the results. Our last little bit of normalcy for awhile. Knowing we would be admitted sometime during the next few days, but not exactly when. How do you grocery shop for that? Krispy Kreme. That’s how. We lived off Chick-fil-A, Krispy Kreme, and cereal that week. Not a good look, but Savannah was satisfied, so I’ll consider that a win.

We squeezed some time in with Cole and Reese at the river, and because South Carolina weather is shifty, I even got to go swimming. I knew this would be the last time we would be able to do something cool like that for awhile. And we went to Fall for Greenville with some dear friends– because friends are absolutely the best medicine. And we wrapped up the weekend with a trip to the pumpkin patch. The boys were totally in their element. Tractors, fields, pumpkins, goats, cows, and dirt. It was amazing. It also was the last time we would be together as a family–for now at least.

I’m so glad we fit all that stuff in. Especially the trips to the river. We visited sweet baby James and watered his magnolia tree— all the while asking him to make sure he’s watching over Reese during this next phase of treatment. And that Savannah stays happy and healthy in mommy’s belly for a little while longer. We’ve got the best guardian angel, after all. And we got to visit him on his birthday. That was a pretty emotional day.

Once our time at home was over, it was time to go back to Charleston. But we got a phone call.

We got a phone call that I will remember forever. Matt and I were at CarMax about to sell our car (we need to upgrade because…three kids). We had just walked out to the parking lot after realizing we didn’t bring the title with us (frustrating)– which you need to sell the car, and my phone rang. Charleston number. It was one of our oncologists, and she had some disheartening news.

There was a concern with the MIBG scans. After the successful tumor resection and chemo that Reese had responded so well to– and because of how well he seemed to be doing in general (aside from his bald head, you’d never know he was sick)– we were expecting relatively clean scans (minimal cancerous activity). Y’all, I am dumbing this down (not that y’all are dumb, because I know you aren’t, just to clarify before you get your panties in a wad) as best I can– I understand all of this stuff (Biology degree and doctor husband), but I know this cancer talk is probably a foreign language to most. The scan showed a relatively large area of uptake where the original tumor was.

This could mean a couple of different things. The cancer could have stopped responding to the treatment, and the tumor was actively making more cancer cells, so we’d need to adjust our plan of attack (BAD). Or it could mean that the tumor had matured, and it was essentially dead (but still receptive to the radioactive isotope that was injected). In this case, these mature tumor cells would be benign calcifications that wouldn’t ever have any impact on Reese. The only way to know for sure is to do a biopsy, but an additional surgery is really out of the question. So basically, the phone call I got led me to believe the first was true. Upon further investigation and collaboration with specialists from all over the country, the scans were re-assessed, and it was determined that the hot spots are probably (hopefully) just calcifications (we would find this out the next day). Talk about drama. Good Lord.

With the way everything has been going, and because Reese has responded so well to every course of treatment we’ve pursued, our oncology team assigned him a Curie score of 2 (previously thought to be 3– and that would’ve changed our course of treatment and prognosis), and we were cleared to proceed with treatment as planned. But that phone call, man. I could’ve done without. Poor little baby Savannah. This kid has been exposed to more stress already than lots of people will ever face in a lifetime.

Speaking of Savannah, for the first few days of treatment, I wasn’t allowed to be around because this type of chemo is teratogenic, and Reese excretes it through his skin, so I wouldn’t be allowed to touch him for fear of causing harm to this pregnancy. Talk about a heartbreaking goodbye. I probably took it harder than Reese, and watching him reach for me as the elevator doors closed behind me is a sight I’ll never forget. That drive home. I was a wreck. So hormonal and pregnant and sad. Ugh. Emotions.

I got to spend a few days with Cole, which was amazing. I miss that boy so much, and it’s not fair that he has to be away from us right now while we focus on getting Reese the care he needs. We watched football and went to ChickfilA to see friends, and just had a good little time. Then I was allowed to come back to Charleston. The chemo had left Reese’s system, and it was safe for me to be around again. I brought Cole with me because I didn’t want him to think we were leaving him behind. So Cole and I spent a couple nights at the Ronald McDonald House while Matt stayed with Reese in the hospital. It was good and bad. Good in that we got to spend a little time with Cole in Charleston, but bad in that he was so frustrated that he had some major tantrums and essentially made it impossible for Matt and I to interact. Not good for a marriage.

Thankfully, we have wonderful grandparents that are willing to keep Cole on some sort of routine while we ride out this next phase of treatment. He goes back and forth between spending time with Matt’s parents and my parents, and he is so happy. He loves his grandparents. They totally spoil him, and that kid is in heaven. As much as it breaks my heart to be away from him, I know that this is what’s best for him. The hospital stresses him out. It just doesn’t work having him here.

Matt and I were at each other’s throats those first few days. We didn’t ever get to talk, and we were both so stressed that we didn’t know what to do with ourselves. And in this case, absence didn’t make the heart grow fonder. It made us resent each other. Me not being able to be around while Reese was getting chemo and Matt having to be the one at the hospital. And when I did come back, we were like strangers because we hadn’t spoken in days– other than to update one another on the other child’s status.

After a long talk about our expectations and emotions and mental states and general feelings and fears, we got everything sorted out, and we’re besties again. Thank goodness. Because I don’t know what I would do without this man. He is the best dad and husband, and I am 100% sure we are soul mates (our birthdays are the same, so that’s totally a sign, right? 5/18/89 and 5/18/90). He is my rock, and I am his wild and crazy. We just work. We fight like hell, but we work, and that’s my man. Love you, babe!

 

I’ve got more, but it’s going to have to be another post. We’re at least basically caught up now. Phew. That was a doozy.

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