I am always utterly amazed at the amount of time that goes by when I finally take the time to sit down and get an update done. Almost 3 months again! Geesh. I wish I could say that it has been pretty status quo around here since the end of October, but unfortunately that has not been the case. Shortly after my update in October, sickness hit our household. But before we get in to all that, we had another big event- Rylan turned 6!
It began with cold viruses. Rylan stayed home from school and willingly took a nap…which is NEVER a good sign…and he woke up with a fever. That transpired in to strep throat. Thankfully Cade did not catch it. Ry did a week of antibiotics and things seemed better. Cades cough lingered, but we figured it would. Meanwhile, Rylan turned 6 the week before Thanksgiving. We had a good old fashioned birthday party here for him with family and a few friends he wanted to invite. Another unthemed party that I didn’t care what we did or how we decorated and let the menu entirely be directed by foods and desserts that Rylan wanted. I needed it simple and unstressful. It was perfect. Afterwards he so dramatically and very Rylan like, proclaimed to me how he “was so happy to be 6 because he was waiting sooooo long to turn 6!” 😂 A few days later they both suddenly started coughing again. Great. Another virus (Insert eye roll and deep sigh). There weren’t many other symptoms aside from coughs and runny noses, but after a few weeks of it, things seemed to be going in the wrong direction. Many sleepless nights and multiple attempts at over the counter remedies, humidifiers, vaporizers, diffusers. You name it. Coughs became wet and junky. Cade sounded terrible and on top of this his blood counts were the lowest they have been since his relapse. This wasn’t helping anything. He was miserable. By Sunday night the weekend after Thanksgiving, Cade was pretty bad. He sounded like he was grunting like a baby does and was exhausted. Chris’ mom had a pulse ox and she brought it over to me. His saturation’s were around 93-95%. I called the inpatient unit and as I was waiting for them to call me back, he had fallen asleep and his saturation’s went up to 97/98% which made me feel better. Thankfully we were going the next morning for treatment so they were comfortable with me watching him overnight unless he worsened. He slept in my bed that night. His oncologist ordered a chest X-ray the next day which was concerning for pneumonia. He had also been waking up in the middle of the night screaming that his ear hurt. It was usually the right ear, and since he can’t hear out of this ear, we figured maybe it was ringing and freaking him out. But they couldn’t see in his ears to assess for ear infection because he had so much ear wax. Radiation causes copious amounts of ear wax. We were waiting for our appt with the ENT to have this removed. His counts were starting to come up though, which was great. They put him on Amoxicillin for 7 days to treat both in the event he did have ear infections. Few days in to this, he wasn’t feeling as good as I would have expected him to be, and in addition to that, Rylan came downstairs telling me he was making funny sounds when he breathed. Fast forward- Rylan also ended up with pneumonia and was put on Azithromycin. A week later both of them were great. Coughs were gone, antibiotics were done. Yay! Well that lasted all of 3-4 days and Cades cough was back and awful again by the weekend. That following week in treatment, I mentioned it and they listened to him and said he still sounded bad. The pneumonia wasn’t gone. So they started him on 5 days of Azithromycin.
The day after that we finally had our ENT appt to get the wax removed. She could only get half of it removed from the left ear because the other half was like concrete, which she gave drops for us to use for 10 days to help dissolve it. The right she got it out, but half of it was nasty and wet and puss like so she cultured it because she was concerned he had a fungal infection in addition to the terrible ear infection she saw in the right. The antibiotic he was already on would take care of it. His counts had recovered, but then he began having bloody noses the week before Christmas, which for us is usually a sign his platelets have dropped. This is not the first time his oral chemo has caused this. They checked his labs that Friday at treatment and sure enough, his platelets were 54. As well as his hemaglobin being 7.6. Since he was back that Monday, they opted to hold his oral chemo, not transfuse, and re-check his labs again Monday. This was a good thing because this same Friday, Rylan was getting an “Excellence Through Effort” award at school and if Cade had to stay for transfusions, we would’ve missed the awards assembly. They give the awards to 20 students in each grade. We are so proud of Rylan! Monday we were back for treatment, which was Christmas week. We had treatment every day this week, with the exception of Christmas Day which we got to make up the week after. His counts were even lower so he ended up needing blood and platelet transfusions. Thank goodness because I was not leaving there without him getting blood. He was so crabby and so tired he had no energy to walk or even eat. He wanted to eat and I’d make him 20 different things a day for him to just look at each and sigh and say actually he didn’t want it. Poor kid. They also informed us that while his ear culture didn’t grow fungus, it did grow positive for a bacterial infection responsible for everything that had been going on. His right ear looked great and they could see in his left ear now, which meant the drops were working…but his left ear now had an infection. ARRRGGGHHH. So he was put on Augmentin…his 3rd antibiotic since Thanksgiving… to hopefully get rid of the bacteria once and for all. He still sounded crappy, but they repeated an X-ray and it did show that the pneumonia was resolved. At least there was something positive!
Everyone thought Christmas would be perfect because he would be happy and full of energy from the transfusions. This should have been the case. However….we learned that Cade has a lovely and rare side effect from Augmentin- insomnia. It was exhausting. Thursday morning they changed him to a different antibiotic to finish out the course, and what do you know, he slept like a baby that night! And ever since. Thank goodness! This week in treatment they said his ears and lungs sound great, finally! But then he started coughing yesterday again so I’m seriously ready to lose my mind. All in all though, we had a wonderful holiday season with family and friends. Throughout the sickness chaos we were able to do some really fun things like taking a flight to the “North Pole”, going to my company holiday party (which is always amazing!), Breakfast with Santa, and our annual Christmas cookie exchange with the BFF. Christmas and NYE were spent with family and friends. Both low key and perfect. I did not stay awake to see the official new year come, but I made it the latest yet since having kids! Haha.
Aside from the roller coaster of sicknesses, we have been dealing with some other things too. He has lost his hearing completely in his right ear and our audiologist got us a hearing device to rent and see if he will wear and adjust to. It reminds me of a cochlear implant, but it is external and worn on a headband. It allows the sounds to be conducted through the bone to allow him to hear better. It would be great if he would ever wear it. The unit psychiatrist also began meeting with us to help aid Cade/us in handling his anger/emotional outbursts. These have thankfully greatly improved since introducing Melatonin at night to combat the severe sleep deprivation that was building up and playing in to the problem a great deal. He has also started occupational therapy weekly to help with his fine motor skills. Through that, we have developed concern for his eyesight so we have an upcoming appointment with opthomology to see if there are any underlying issues there that could be contributing to some of these other problems. We have also noticed a great deal of memory issues which is hard to determine whether it is related to his age, age appropriate regression, possible “chemo fog” from all the treatment he has received, and/or if we are starting to see damaging effects from the radiation. Things like forgetting how to open a push button water bottle and how to take his footie PJs completely off to simply asking me the same thing 300 times in 30 minutes. We are praying it is not the radiation effects since they had told us it could be 5+ years before we would see any cognitive delay type side effects, so to start seeing it this quick is definitely concerning. He will have another neuro-psych evaluation to give us a new baseline post-radiation and then we will go from there. Only time can tell. If it is permanent damage, there’s of course nothing we can do about it, we just have to adapt and deal. I’m just praying that there’s another answer. A more temporary resolvable one.
On a bright note, Cade continues to amaze his oncology team on a daily basis with how much his hair is growing in 🙂 We continue to mix alternative therapies with his conventional therapy and found a wonderful place in town called Chapel Hill Bodyworks that we have added to the mix. We have started taking Cade there for cranial sacral/reiki therapy. I have been reading a book that was recommended to me by a friend called “Radical Remissions” and it’s such a good book. Parts of the book highlights stories of how alternative healing methods have worked for different people and their experiences with them. I fully believe that the mind, body, and spirit are all connected and involved in our healing process from anything. I can see such a difference in Cade after these treatments. He is so happy and full of energy, you can just tell he feels so good afterwards. One of these times I am going to make an appointment for myself, I know I could use it too! Haha.
We were beyond blessed by the kindness and generosity of so many people throughout the holiday season. It was so heartwarming. I continue to be beyond blessed and grateful for my MIDC family and for our Natures Scholars family. We want to thank every single person that continues to pray for our sweet boy. We are so grateful to all of his prayer warriors. Monday, January 13 is our next set of scans. Our scan in November was stable with slight improvement, which was what our oncologist was hoping for. I don’t know what he is anticipating this time around. He told us before Christmas that he is leaving. We are so devastated by this. Our oncology team was the whole reason why we chose to stay at CHW for his relapse treatment vs. going to Lurie Children’s. I’m also very frustrated because I’m pretty sure the day he told me is the last time I’ve seen or spoken to him. I know he’s there because I see him often when I walk past his office window. But he isn’t the one to see Cade in clinic or come and do his chemo in the day hospital. His last day isn’t until the 20th. He kindly said he did this for a reason, so he could be here for his next scan. For that I’m grateful. But I expected to see him over the last month due to this. I can tell that in his mind, he has already checked out and this is incredibly disappointing to me. I expected more from him as a practitioner and medical professional. I try and ask the NP things I want to ask of him and answers I want, but I don’t get anywhere. She doesn’t get back to me timely with his answers for me, sometimes not at all like on Friday. I can feel the peace that I’ve asked God to surround me with and give me throughout the week leading up to his MRI’s. I’m praying hard that we see even more improvement. That every piece of treatment and every alternative method we are throwing at this is working and helping his body to heal itself. Please God, heal Cade. Help him to have a radical remission too. Amen. ❤️ 🙏🏼 🙏🏼
Our Warrior Journey 