Hey y’all! My apologies for the radio silence on social media these past couple weeks. Immediately after spending our Christmas in the hospital, Reese started to turn a major corner. Little man did a 360 in terms of recovering from the nasty side effects from the high dose chemo and stem cell transplants. And boy did we run into every side effect in the book this time– extreme nausea, neutropenic fevers, bacterial infections making themselves right at home on/in his Broviac (central line), mucositis, his central line disconnecting itself from Reese’s chest, the insertion of a PICC line in his arm, removal/replacement of his g-tube (in the stomach), and just general misery.
For the first 12ish days, Reese basically slept, refused to eat or drink, and insisted on being held. It was so hard to see him in so much pain. Even though he was on a constant morphine drip and hooked up to a million other IVs, his affect was so low that it was painful for Matt and me to see him like that. We had a good bit of help during these few weeks, in the form of grandparents and friends, and we are extremely thankful for that. Everyone who came and visited or sent us messages or gifts or food– y’all really made this hospital stay a lot more pleasant for us.
Once Christmas came, Reese still wasn’t feeling like himself, but he started improving exponentially during the days following. Every day he perked up a little bit more, and he wowed the doctors so much that we were able to earn an early discharge by Day 19. That was totally unexpected, as we were hoping that we’d get to go home by Day 24 at the earliest. Some kids who undergo treatment of this intensity don’t get to leave until Day 30 or later.
We got released the morning of the snow storm. Yes, you read that correctly. A snow storm in Charleston. WTF?! We had to rush to get out that morning ahead of the chaos. It took us forever to get out of the city because the ice caused first responders to close every bridge leading into and out of the city. We barely made it out before the last bridge was blocked. And after driving nearly the whole way at 35mph maximum and slipping and sliding the whole way, we finally made it home nearly four hours later. I have never been more excited to see our house.
Upon arriving home, we walked into a huge mess of Christmas presents, dirty laundry, lack of groceries, unsent Christmas cards, unopened mail, packed suitcases, and a collection of medical equipment. Overwhelming to say the least.
Taking care of a cancer patient at home was not something we were really prepared for, if I’m being honest. Not only does Reese have a strict regimen of medicines that require multiple doses at certain intervals each day, but each of these medicines has to be administered through Reese’s g-tube. He doesn’t take anything orally, so the g-tube is the only way we can give him medicine. In addition to the medicines, his PICC line and g-tube have to be flushed– the PICC line once a day and the g-tube following each dose of meds. Also, since Reese still isn’t taking in enough nutrients or calories by mouth, we have to hook him up overnight and multiple times a day to his tube feeds. Basically, Matt and I are full-time nurses. We should be able to wean Reese off of some of meds and feeds in the coming weeks, but he has to show a lot of improvement in terms of being able to take food by mouth. So far we’ve been able to get him to eat ice cream and a couple other snack foods, but nothing substantial enough to merit discontinuing the feeds.
Other than the constant home care Reese requires, we have to take him into clinic a couple times a week to get his caps changed, labs done, and PICC line and g-tube evaluated. And this week, we are meeting with the radiation oncologist to discuss the next phase of treatment– radiation. Radiation therapy will occur in cycles, much like the first five cycles of chemo were. Reese will be sedated for a short course of radiation every day (M-F), and then he will be released and able to resume normal activity. These treatments will take place (depending on how many treatments the team decides upon) over three to six weeks. This phase of treatment will target any and all of the remaining sites of concern, and afterwards, we should be able to have more scans performed to ensure that all of the treatment thus far has done what it’s supposed to do– eliminate any evidence of cancer. But just because we expect to find no evidence of disease, it doesn’t mean we’ve seen the last of the treatment.
The last remaining obstacle will take place on an inpatient basis– also in cycles. Immunotherapy is the last phase of treatment in Reese’s regimen. Unfortunately, this phase of treatment takes place on an inpatient basis, and it’s very painful. This will require Reese to be on a continuous morphine drip, and he will remain in the hospital for a good chunk of time. Immunotherapy targets disease cells at a cellular level to ensure that every last neuroblastoma cell is eradicated, and the risk of relapse decreases significantly. Right now, research shows that the most likely cause of relapse in neuroblastoma patients is if any of the initial cancer cells are missed or left behind during the initial course of treatment. That’s why the treatment for neuroblastoma is so aggressive and takes place over such a long period of time. They want to make sure they get every last cell, so the disease is unable to start back up again. After this last phase, he will be monitored on a semi-monthly basis in the form of checkups and scans to ensure that the cancer doesn’t returned. After five years of continuous monitoring, the likelihood of the neuroblastoma coming back drops significantly, and Reese can be considered “cured.” That is our goal.
A cured Reese is our goal, and we are definitely moving in the right direction. Basically, Reese has responded to every course of treatment up to this point as well as a patient could, so it’s essentially been a textbook example of a successful road to recovery (KNOCK ON ALL THE WOOD to make sure things continue to work in our favor). Every prayer has helped us, and I ask that y’all continue to pray for our family as we continue this fight. We are certainly winning! Not only do we have the best group of prayer warriors and the most supportive community of friends, family, and followers that I’ve ever seen, we also have the best guardian angels (Cole Sawyer and Baby James Daly) watching over our little guy as he continues to kick cancer to the curb.
In addition to continuing treatment for Reese in his cancer battle, our family has a lot of big events on the horizon– you know, because we never really seem to slow down or do anything the easy way…
(1) I’m getting my cerclage removed in a week– for those of you that don’t know what a cerclage is, I can assure you it’s just as glamorous and fun as it sounds. Anytime after that stitch is cut, baby Savannah James will make her debut into our family. Baby number three for us, and our first baby girl. We are excited, ecstatic, enamored, stressed, anxious, terrified, and on edge. A third baby would be hard enough to adjust to without the added stresses of having a sick child, building a house, and having a husband in residency. So please pray for us. Oh yeah– and did I mention that little miss is breech? Because we figured that out yesterday. So I get to have another version to try and get her to flip head-down. Really not feeling a C-section right now. Why can’t one part of my life be easy? Good grief.
(2) After our house construction loan debacle (remember how our loan officer had a mid-life crisis and forgot to submit our application for approval, costing us at least a 2.5-month delay in closing, and therefore, building? Yeah. Not cool, Todd. No glowing recommendations or referrals will be coming from this family, that’s for sure), we have finally begun construction on our new house– a much larger house than the rental we have long since outgrown. Unfortunately, due to the original loan officer, we are about three months behind schedule and won’t be moving into our new house until late spring at the earliest.
(3) Matt is going to be working back to back to back to back difficult rotations at the hospital with on-call days, overnights, and long hours. This is to be expected after the major flexibility his residency program allowed him during the last few months, so he could be with Reese and me at the hospital during the high-dose chemo and stem cell transplants. Honestly, I don’t know what I would’ve done without him there with us. He helped so much and gave my huge pregnant butt a break, allowing me to sleep at the Ronald McDonald House in a comfy bed with a private bathroom (as opposed to the couch in the hospital room with constant beeping and nurses coming in to check vitals all night long). He definitely took one for the team, and I will always be grateful for that.
(4) Cole and Reese are going to be potty-trained ASAP. Yes, I’m going to attempt to train both of them at the same time, and yes, I realize Cole should’ve been trained a LONG time ago. But due to circumstances beyond our control and a super chaotic year, we were unable to tackle this milestone. Now that we’re back home for good, I’ve got to get this taken care of, so Cole can resume drop-in daycare a few days a week. This kid needs routine like I need to shop. He thrives on it. The only think keeping us from putting him back in daycare is the fact that he can’t be in the three-year-old class without being potty-trained. And the extra help will take such a load off me with having to take care of all of Reese’s needs and a new baby Savannah.
(5) Planning. I have a lot of things to plan this year.
(A) We have to choose which Alabama home game we will be attending this fall with the kids to meet Nick Saban and the team and to tour the facilities. We were supposed to do that this year, but Reese’s treatment schedule didn’t allow us enough time, so we were able to get a raincheck, thank goodness. I could not be more excited for this!
(B) With Reese about to be 2.5 in a couple months, he will become eligible for his Make-a-Wish trip. We have to submit our application for this the second he becomes old enough because the application process can take months. Our Make-a-Wish trip will hopefully have something to do with taking our family to the Disney Aulani Resort in Hawaii to meet princess Moana. We NEED this vacation after this cancer debacle. Good Lord, do we need this trip.
(C) I need to plan a 4th birthday party for Cole that will hopefully take place in our new house!
(D) I need to plan a “Reese is Cured” party for Reese to thank all of the people that have helped us along this journey– it’s going to be big and fabulous.
(E) We’re going to be going on a much-needed trip to the Gulf coast this summer with our entire family and a tubeless and wireless cancer-free Reese. This will be his first trip to the beach since he began treatment, and he will be able to play in the sand and water like a normal kid. We’ve waited for this day for a long time, and I can’t wait to see him take to the water like a little fish. Before the cancer, he was obsessed with the water and the sand. Splashing, swimming, jumping, building sandcastles– all of it. He’s earned this trip, and so have we.
(F) With the completion of our new house, we will be hosting our families for the holidays this year. And I will be taking every opportunity to invite people over to show off my beautifully decorated new home. Total southern belle goals, y’all. Everyone’s welcome!
Those are the things I can think of off the top of my head at this moment, but I also want to plan an event to help raise funds for childhood cancer research– a big society event/ball of some sort that will become an annual event in either Columbia or Charleston. I think that’s going to have to wait until next year, though, once things settle down a little.
And I want to team up with some pediatricians to advocate for the routine use of ultrasound imaging in young children’s well-checks. It’s non-invasive and not expensive, and if this was a regular part of our children’s well-child-checkups, Reese’s neuroblastoma would have been discovered months earlier, and it wouldn’t have been advanced to stage IV. This would make the prognosis much better than the <40% survival rate we were saddled with. If doctors could catch things early, the treatment would be more effective and less intense, and the survival rates would be much higher because the chance of metastasis (spreading to other parts of the body) would be much lower because the disease wouldn’t have had so much time to mature.
So that’s what’s been going on around here, and besides all of the chaos involved with readjusting to life at home, I’m 36 weeks pregnant and can barely move because of back pain, hip pain, fatigue, and general issues that come with the territory of being this pregnant. I’ve been moving very slowly, and I still haven’t sent my Christmas cards out, but I promise y’all, they’re coming. Just gotta buy stamps! We’ve gotten everything ready for baby in terms of upgrading to a Suburban (ultimate mom car) and buying an infant carrier. All that’s left is to set up the bassinet. I was hoping to have a nursery for Savannah, but our house isn’t built yet, so it looks like we’ll be sharing a room with the baby for a few months. Not my first choice, but such is life.
I’m sure this was the most boring blog post ever, and I apologize for that, but I did owe y’all an update.
Oh yeah, and ROLL TIDE! Number 17! National Champions, and once again, all is right in the college football world.