We hope the third time is a charm for Charlie having his necessary scoliosis rod-lengthening surgery. It has been canceled twice and now scheduled for — the third time — for early June. It was initially scheduled February 9; however Charlie was hospitalized with RSV. It was rescheduled for May 5, but Charlie’s pre-surgery covid test taken on May 3 came back POSITIVE. Now we hope to have it successfully completed in the coming weeks. Please say a prayer that the surgery occurs and that it is a success with minimal pain. I have more prayer requests, but I’ll save them for the end.
What are the chances though that Charlie had covid in January, RSV in February and covid again in April? Thankfully covid didn’t impact him much. That RSV though… I pray he never gets that again!
Al and I took a much needed trip to California late April. We were scheduled to go to Florida in January but Charlie contracted covid so we canceled our trip. Thankfully our April trip happened! We joined my family for a weekend of wine tasting in Temecula. It was wonderful. We had gorgeous weather, great wine, lots of relaxing and time with my mom, stepdad, sister, aunt and more.
While away – grandpa informed us that Charlie was sick and he needed to pick him up from school on April 25. He had a bad cough – much worse than usual cough – and runny nose. It continued all week. Some days better than others. I kept thinking – please get over this in time for your surgery on Thursday, May 5. Charlie had his pre-surgery covid test on Tuesday, May 3 then went to school. He still wasn’t feeling 100% so I picked him up early. I thought… oh man, we’re going to have to cancel surgery since he’s still not over this cold BUT let’s wait for the covid results first. I went to bed assuming he was covid negative since I never got a phone call. I woke up at 2:30AM Wednesday and to my surprise covid POSITIVE! We canceled his back surgery along with the skin biopsy procedure also scheduled for while Charlie was under anesthesia. Thankfully by the time Charlie tested positive he was pretty much over it and had only cold-like symptoms. Charlie was set to return Monday, May 9 but school wouldn’t allow him back until Monday, May 16 because “we needed to go with the date of his test (May 3) due to the difficulty of definitively determining onset date with symptoms.” That was surprising since I have messages from school beginning April 22 and continuing the entire next week about Charlie being sick. Charlie has now missed 38 days of school due to covid-related absences — 59 days total including doctors’ appointments and his RSV hospital stay. That’s 33% of the school year that he’s missed.
I was recovering from gum graft surgery that went awry during all of this. I had a gum graft 9yrs ago on one tooth when I lived in Milwaukee. The periodontist used donor tissue and I don’t remember much about it other than being a little swollen. I went into this graft assuming the same. Oh boy was I wrong. This time the doctor took skin from the roof of my mouth, which I think is more common, and covered my two lower front teeth. I went home sore, but no problem. Once home my mouth started bleeding pretty bad. After a few hours I told Al – you have to call the doctor. I had a retainer in my mouth to cover the gaping holes in the roof area. The doctor instructed me to remove the retainer and try a tea bag… mind you, hand towels weren’t even doing the trick so I wasn’t sure what a tea bag would do. Anyways, he said if it doesn’t stop bleeding in 30 minutes then call him back and he’ll meet me in the office. Once I took out the retainer – the bleeding became significantly worse. I mean it was bad. Al called the doctor back and said … I know it’s only been three minutes but you need to meet us at the office asap! The doctor said it was a pulsating blood vessel that wasn’t going to stop on its own so he injected some medicine and stitched me up. I took advil every 6-8hrs for 7 days straight due to a constant headache and mouth pain. That’s what I get for going into it as if… no big deal!
Charlie has been part of a clinical trial for a drug named BYL719/Piqray/Alpelisib/VIJOICE (yes it has 4 names). It’s a breast cancer drug used to target a specific gene – an overgrowth gene. In breast cancer patients that gene overproduces cancerous tumors so the medicine is used to stop the gene from producing. Charlie; however, has a vascular anomaly and the overgrowth gene is to blame for his large birthmark, extra thumb on his right hand, contributes to scoliosis, eye issues and other internal issues that we are unaware of. Charlie has been taking this drug for 3yrs as part of compassionate use from Novartis. Charlie sees an oncologist every 3mos to document benefits observed with this drug as well as side effects. We haven’t noticed any side effects. And while it’s hard to gauge if it’s helped Charlie – while on the drug, his birthmark is non-existent. However, there have been a few times we had to stop the drug and within a week or two of stopping the drug – Charlie’s birthmark returned significantly. So we like to think that if the drug is working that well externally, we wonder how its benefitting Charlie internally. Anyways, just last month the FDA approved the drug for vascular anomaly use. That’s great news, of course. The challenge is that we have been getting the medication for free via Novartis. Starting July, we will need a prescription and will get the drug from one of the few pharmacies that will carry it. Most drugs new to the market are VERY expensive and I am told it’s a fight to get insurance to cover it. Novartis will have a patient assistance program specifically for PROS so I’ll tackle that when the time comes in a few months.
Charlie will have a skin biopsy on the same day as his back surgery June 9. If you read my last blog – it is because Charlie has had what I consider shiny skin all over his stomach and chest. His dermatologist wants to take a few samples to see what’s potentially causing this.
Despite Charlie’s 2nd bout of covid – we have had a lot of fun over the last few weeks. We had a wonderful Easter. Charlie enjoyed meeting the Easter Bunny with Grandma and Grandpa. And he went on an Easter Egg Hunt with mom and dad.
His school had Field Day on a Saturday. Charlie loves anything school-related! He also came in 2nd place in his 50m dash at field day.
Even while having covid we had a lot of fun. We rode a lot of bike – one of his favorites 🙂
Since he wasn’t able to go to school post-covid we decided to go Up North on a Thursday (Grandpa’s birthday) and stay until Saturday. Charlie had the best time! He loves fishing and doing outdoor activities there, but Al and I always say that we think Charlie loves it so much because he has 4 adults giving him attention every second of the day.
Just last weekend Charlie’s school celebrated its 50th anniversary with a party. Charlie was proud to show off his locker at school.
The first prayer I ask for is for our dear friends Fred and Lauren – their adorable 7yr old Marjorie June passed away in her sleep last week. I have always felt a special connection to them. Charlie and Marjorie had their big scoliosis surgeries a day apart. I’ll never forget walking into their recovery room in February 2021. Marjorie was sleeping so I tip-toed in and quietly asked if I should come back. Lauren (in regular voice) said no, sit down! She didn’t whisper once. I was amazed because when Charlie is sleeping you can’t even crack a knuckle because it might wake him up. But Lauren and I hung out for awhile while Marjorie slept soundly. She is such a doll and her mom is one of the best moms I know.
Please keep Marjorie and her family in your prayers. Please keep Charlie’s family members and caregivers in your prayers as well. We haven’t had the best news as of late so the more prayers for health and well-being, the better. Al and I always say that nothing can ever happen to the people closest to Charlie – they have to live to 100 because Charlie would be lost without them. Please pray for a safe and fun summer for Charlie. I signed him up for every camp you can possibly think of. And I’d be remiss if I didn’t add that prayers are very much needed right now for the Uvalde, TX community.
Charlie, our Angel 