Wow. I can’t believe over a month has passed since my last update. Where on earth has the time gone?! Time sure flies by the older you get. That’s a phrase you never buy in to as a kid and just think ya, whatever. But it definitely does.
My last update we were half way through radiation. Well Cade finished his 6 weeks of radiation on June 21. Between the 3 week mark and the end, his skin got very dark and began to peel. Like a bad sunburn would. Our nurses were fantastic and preemptively started domeboro treatments and salivadene cream in place of the aquaphor we had been doing. We were all hoping to avoid the skin getting really painful or uncomfortable for him. It itched pretty bad, but that was really the worst of it. He did all the skin treatments like a champ. We would do the domeboro soaks twice a day for about 20 minutes. In the beginning I had him sit on the couch and watch a show with a snack to make time go by as I had these wet clothes all over his head and ears. After about a week I got smart and we began putting all the clothes on and then wrapping a bandana around his head to hold them on so that he could go outside and play and ride the gator (his absolute favorite thing to do!). It worked great. He looked adorable. Near the end of treatment the peeling and redness had moved to the back of his head and spine so I had to re-create the bandana wrap a little to hold the clothes in place where they were most needed. Picture a mini Aunt Jemima with Cades face. Or 2Pac if you ask my husband. His skin did awesome through it all though. We were grateful he was lucky enough to not get any open burns or sores anywhere. We had several trips back and forth to Central DuPage hospital for platelet and blood transfusions, but other than that I feel like overall he did great. His appetite was up and down, but his weight stayed stable. He never had any further vomiting or nausea issues requiring medications, we never saw the chronic fatigue kick in as they said was a common side effect. In fact, Mr Jason and Miss Katie at the Ronald McDonald House were always so surprised by his level of energy. Cade loved Mr Jason. He was on of the resident managers so he’d often be around in the evening and they would play together after dinner. Throwing balls in the house, playing giant connect 4, playing football outside. I was always kindly asked by Cade to please leave or go away so they could play. “No girls allowed” he would tell me. Jason has 3 boys himself, all older, but is definitely that dad who encourages all the behavior and things that drives us mothers crazy. Katie jokes now with me that Mr Jason is pretty lonely there now that we’re gone and he has no one to play with.
Everyone at the Proton Center was amazing. Our entire experience there was such a wonderful one for what it had to be. Cade continued to make them laugh with his choices of music for each day of treatment. I think he covered almost all genres besides country. He went from Post Malone, NAS, and Eminem to Mumford and Sons and Beastie Boys. Added some Metallica in there several days in a row, and ended his last two days with Toby Mac. Made this momma’s heart smile. The radiation techs just loved his music, especially the Metallica days. Agreeing with Chris that they are the best band ever. Haha. Our last day there was a party. The nurses decorated his room in a camping theme. It looked so cool. They had toys there for him, brought donuts. You name it. They made his last day a memorable one. So much actually that he was really upset to be done. He woke up from anesthesia that day just sobbing that he wanted to go back to the treatment room and do his treatment again. That night or the next he was still off and I heard him crying on the monitor and when I laid down with him to talk to him and figure out what was making him so sad- when I got to “are you sad because you’re all done at the proton center” he just let out these wallowing sobs and gasps. It was heartbreaking. He got to sleep in mom and dads bed that night. As the days passed, he readjusted to being back home and just getting to have fun, play, and especially to get to wake up and eat or drink whatever he wanted to.
They wanted to give Cade a month of recovery between the radiation and the start of chemo, so we have been trying to enjoy every minute of it. From sprinkler parks and pools to going to the zoo and Color Me Mine for crafting. Parks, bike rides, picnics. Chris and I were trying to think of other fun stuff we could do one night after the boys were in bed and thought about Chicago. He looked up hotels for the weekend after the 4th just to see how crazy expensive they were, and to our surprise they were insanely cheap so we booked one and took the boys to Chicago for their first time that weekend. We stayed in a hotel right on Michigan Ave. across the street from Grant Park. It was a great time. I had not been back to the city in ages. Probably since having the boys. It was so fun to see all the changes. Maggie Daley Park and the bridge across to it. Everything in that area is just beautiful. Our last night there we took the boys on the EL down to Wrigleyville to one of Chris’ friends for dinner who lives down there. It was crazy to see how much things have changed down there around the stadium. It looks incredible. The boys had a lot of fun, they definitely want to go back there again.
We have seen Dr Knipstein a couple of times since finishing radiation. We hadn’t seen him since the very end of April. He was happily surprised to see how great Cade looked. He had told us that he was really worried when we were admitted to Lurie for that scare in May. He was worried that it had spread to the point of no return explaining that if medulloblastoma spreads and grows really rapidly, there ends up being nothing you can do to stop it. That was terrifying for me to hear because I never realized that. Or maybe my subconscious had just blocked it out for not wanting to believe such a thing to even be possible. I pray every night to the Lord that that will never be the case. That he will help to heal Cade and help him to win this battle once and for all and that he and Rylan will one day get to go back to just being kids. At our appointment we talked more about the chemo plan. We had known that Dr Knipstein as well as the Lurie team both felt that a trial referred to as the MEMMAT trial would be the best treatment plan for Cade and knew that this particular treatment involved having an Ommeya reservoir placed, which will be another port similar to the one he has in his chest, but this one will instead be in his scalp and into his brain allowing them to give a couple of the chemo medications directly in to his brain and spinal fluid circulation in hopes to be more effective. Knowing this, I had reached out to Elizabeth, Dr Ruge’s NP who I love. I love that whole team. I asked her if Dr Ruge would be open to putting the resevoir in vs. us having the neurosurgery team at CHW that we aren’t familiar with doing it. She said that he absolutely would if that was what we wanted and asked for a time frame so she could save a spot for him on Dr Ruge’s schedule. She ended up getting back to me that his OR schedule was completely booked through October with the exception of July 17. We talked to Dr Knipstein about this and whether or not this would work out in the schematics of everything and by some blessing, it actually worked perfectly. We mapped out what the month would look like and what the plan would be from there. He would have the Ommeya placed July 17 and then that would give him a few weeks of healing before starting chemo. Meanwhile he will have repeat MRI’s and LP done the following week on July 25 to see how well the radiation worked. They had planned to repeat the MRI 4-6 weeks post radiation because radiation continues to work weeks after it’s completed. This was why we didn’t see the skin get angry red and start peeling until almost week 4 because we were just then starting to see the effects of the first 3 weeks take place. They will also repeat his hearing test as well the last week of July so we can see where he is at with that. Unfortunately when we learned that everything had grown significantly from the MRI’s repeated at Lurie in May, it changed things for the amount and location of boost doses they had to do at the end of radiation. The tumor had grown in/on/around or something of that nature to both cochlea. This means that while we knew there was a pretty good chance he’d lose some of his hearing in the right, they felt they could spare the left. This was no longer the case. Dr Hartsell told us that he will definitely end up needing a hearing aide in the right side and most likely on the left as well. He had done a thinly sliced CT prior to these doses in hopes to see that he could lessen them a little and spare the left ear at least. But he still saw enough thickening to be concerned that if he lessened it to much and it ended up coming back again then it would cause bigger problems. So unfortunately that’s where we stand with that. We also won’t know where this will end up leaving him cognitively for a good 5 years or so down the road. However, we were absolutely thrilled and relieved to see Cades beautiful smile and facial movement return almost to completely normal. His pupil size is still slightly more dilated on the right, and this may never return to normal due to nerve damage. But the fact that the cranial nerves weren’t damaged to the point that the facial paralysis was permanent is definitely an absolute blessing!!
We were given a quick draft of what chemo would look like with a tentative start date of August 5th as long as his blood counts are looking good. The chemo will be all out patient/day hospital trips back and forth rather than lengthy inpatient stays like we had done before. It will be several drugs given through both ports on day hospital appointments along with about 5 medications he will have to take orally at home every single day. Some of them are chemo so we will have to wear gloves when handling and have strict precautions for handle/disposal of them. We are in the process of putting them all through to the pharmacy so that we can wait for insurance to reject them all, which I already had the first phone call about the other day, and then the office will have to work on appealing and getting them covered. Hopefully. We met with Dr Ruge and Elizabeth this past Friday for our pre-op appointment. He discussed the risks of the surgery and the details of the surgery itself and what to expect. Cade will have the Ommeya placed this coming Wednesday and then will remain in patient in the PICU for close observation looking for pain and any neurological changes. Their hope is to have him discharged within a couple days unless he’s having a lot of pain and comfort issues. Please, please keep him in your prayers Wednesday for a very smooth surgery with no complications and a comfortable recovery with no issues and minimal discomfort.
I wanted to thank everyone so much for all of the participation in the day of fasting and prayer that we had for Cade in the beginning of June. I was so incredibly touched by how many people joined us to lift up prayers for complete healing. I truly hope the Lord is hearing us. And just thank you in general to everyone for all of the continued love and support and prayers. We would not be surviving without it, I assure you! ❤️ I continue to see butterflies everywhere I go. On the 4th of July we were at my sisters house and during our water balloon toss a huge one flew right between my mom and I. Our weekend in Chicago I saw them everywhere. Even today a beautiful big one flew right past me in the backyard and fluttered around the middle of our yard a bit. I feel like I see them in the car daily, whether I’m driving 40mph or 90mph they practically fly right in to or past my windshield or front of my car all the time. Maybe it’s nothing, but I find comfort in it and like to believe that it’s more than just the season. That it’s God letting me know he’s still right here with us helping to carry or lead us through this battle. 🦋
Our Warrior Journey 