Merry Christmas and happy new year! 🎄🎁🎈🎊🎆 🎉
We went to Iowa in November with hopes that she could start an experimental medication, one of the first medications that is actually targeted for her C3G condition. From my understanding, it is not a cure, for there is no cure for her condition, but a maintenance medication. Like diabetes or hypertension, where the medications help to manage the conditions but don’t cure it. Anyways, turns out Alyssa is too healthy and therefore does not qualify to join the trial. We were both happy and disappointed. The medication is subcutaneous, injected under the skin, so she would hate it anyways. There may be a later trial for an oral medication, so we hope she may later qualify for that. It’s also scary because the first 6 months the trial is a blinded, placebo trial, meaning you don’t know if you’re getting the medication or not. If you can get past the 6 months then subsequently you automatically get the medication. If you get too sick, of course you will be treated otherwise for your condition. But it’s tough, to stay in that window to endure the trial to get to the medication.
She is weaned off of her steroid! She’s free!!!! Well, free of the worst medication. She is already shedding her “moon face” and weight as her appetite calms down. She is also free from dietary (sodium) restrictions. She has been on the steroid for a year and half now, which is too long. Iowa nephrologist said that she should only be on prednisone for surges of protein in urine. There was a moment where it was discouraging to hear her doc be surprised that Alyssa was on steroid for so long, as it comes with damaging problems like high cholesterol, high blood pressure, low calcium, moon face, weight gain, and more. We are at a loss because there’s so little known about her condition, that we often feel blind as we try to navigate her condition. And that’s even with the medical professionals in the family. She is still taking her other immunosuppressant, MMF, and that’s for life. Hopefully her cholesterol levels will come down quickly too.
She completed her Physical Therapy for hip pain, and it was very helpful. Lots of exercises like bird dogs, dead bug, balancing on one foot while throwing and catching a weighted ball, and more. A few days ago she fractured her foot. She tripped on a rug, in between games of charades. Today she got a boot for her fracture. It should heal in 3 to 4 weeks. “I hate looking injured,” she said. “You ARE injured,” we reply.
Stomach pains come and go, occasionally bad enough for her to miss school. Stomach pains are possibly steroid related. Currently, doc suspects her getting off of steroid will help. She says they’ve improved a lot since stopping steroid.
We’ve been sick a lot. November, she was sick for a week. Then bro was sick for a week. Then I was sick for a week. What extra sucks is that I don’t know for sure that we have the same sickness as her, so we still have to mask through it all at home or stay away from each other. My family is affectionate and likes to be in the same room, so endless masking is tiring. Not gonna lie, I had to hide in my room to get mask breaks. Then in December, bro was sick with influenza A and strep throat for another week, then I was sick, then Alyssa got sick. Her fever went up to 104.6 and we were giving her baths, smoothies, and Tylenol and Advil (ibuprofen) around the clock. Thankfully, her kidney function is good now, so I can give her ibuprofen. If her kidney function worsens, we have to be more careful about ibuprofen, because it is renally excreted. January, now we are finally all better and are now catching up on celebrating Christmas with relatives.
She has… a sty? Or is it an infection since she’s immunosuppressed? She’s doing warm compresses for now and it seems to be improving. She has an appointment with ophthalmologist in February. Appointments are crazy these days. We are appreciating immediate care. And I’ve learned that immediate care is a lot less busy in the morning, so now I know to just rush there instead of joining the 3 hour wait in the afternoons.
She also had a mysterious rash on her upper lip. We suspect it’s an allergy to gogi berry or monk fruit in her drink. The rash vanished a few hours later.
Navigating school documentation has been interesting. She has a lot of absences or excuses from PE due to her medical appointments, blood draws, hip pain, migraines all on top of her regular kid sicknesses. When she gets a virus like the flu and misses 5 days of school, that’s normal for her. The school wanted a doctor’s note when 3 days happen. I love her school staff and strongly want to support them in their need for documentation for their liability. Her PCP was unavailable that day, so I went to immediate care. Immediate care was full and turning patients away. I took her to another immediate care, where there was a 3 hour wait, and there was an unmasked toddler hacking and coughing. That is a nightmare place to sit with an immunosuppressed child, so we left and I called the school to ask if we could be excused from getting a doctor’s note. Thankfully the nurse was very understanding and supportive. And then keeping up with homework. Fun. It’s like, she’s almost normal and seems normal but then misses school and is back and tada, she’s fine and performing on par with her peers. Then she’s not fine with her health and catch-up is hard. I’ve heard immune disease described as an invisible illness, because you seem fine but then bam, things get ugly and people don’t understand why it’s so hard. SO TRUE. In fact, the nephrologist wrote a note for school about her condition and instead of writing immune disorder, he wrote it as “inflammation of kidneys” as the reason for her blood tests. Part of me is so thankful I started this blog as additional proof and as a timeline of tracking her condition and issues, so it’s easier for me to date issues and dig up documentation as they come up.
Junior high is a different beast than elementary school. Kids start wrestling with deeper issues, including mental health and social struggles. For Alyssa, it’s fine because only her elementary school feeds into the junior high, and she gets along swimmingly with others. But for other kids, they really look forward to high school and making different friends. Alyssa is interesting because she already has a more mature life perspective, after seeing some death in the family, grieving her condition, and already been exposed to other kids who are more gender fluid. She once asked me how I would respond to her challenging her gender identity. I asked, “Why? Is this something you’re really thinking?” “No, but I want to know how you would reply.” “Well… more than gender, I would be worried why you are unsatisfied with what God gave you. Race, height, gender, wealth, health, country, and more. There is a lot that we don’t have control over. Some people are so unhappy with what they are that they do everything they can to change it, like plastic surgery, gender surgery, and surgery is dangerous, so that thing must be VERY important to them to take that big risk. I think I would worry more about your attitude towards what you have been dealt in life. I would hope that you learn to be content with what you have, so you don’t go chasing unnecessary surgeries or wallow in misery.” It’s a challenge because of course she hates masking and can’t help but wonder, “Why me?” Then we loosen up on socializing and sanitizing everything, and then inevitably she gets sick, and she is reminded how much it sucks for her to be sick all week and we tighten up again and keep some distance from others. She notices that a LOT of classmates are sick these days. Sucks.
Al got a 3D printer and is having great fun with it. He’s learning a lot with Blender. Al’s next goal is to make a Harry Potter chess set. 😄
It’s a new year, and we look forward to it. Thank you for being our friends (or family, as you have no choice haha) and for loving and sharing in our journey. We hope to see you in person soon!
One in a Trillion: Alyssa’s medical journey 