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Rest In Peace, Charmin.

Charmin, thanks for the love. We’ve loved you from the beginning to the end.

Kids are recovering well from their procedures. Alyssa is completely healed already. Brother is still recovering, thankfully back in school. In another week hopefully he’ll be able to return to sports.

Recently Alyssa attended a birthday party, and due to dietary restrictions plus being post-op, she could not eat anything there. Not eating gathers too much attention, and lots of classmates kept asking why? A lot of classmates don’t know the details of her condition, as their parents are not on Facebook for me to connect with. She found it tiring to be bombarded with the same questions over and over again.

Next up, flu shots and hoping Alyssa responds, more blood work, continuing to ride the rollercoaster of watching her protein levels, establishing care with a new pediatric nephrologist, finding brother an orthodontist, and some house repairs that remains neglected. Al has finished reviewing 900+ applications, only to emerge with a fu Manchu mustache. Just kidding, he doesn’t have the genetics to grow one.

We parents had a possible Covid exposure and we were masking at home for a while, but thankfully we’re negative for COVID.

Brother’s surgery went well. He is home recovering. Kids thought it was strange I referred to him nameless, and I spent time discussing how later anonymity could be a great gift that he may appreciate in a few years, that he can define himself on the internet rather than by mom and sister via this blog. And so, I refer to him as brother and try to be vague about him.We discussed with Alyssa with the massive ongoing interest in her condition, for my sanity to streamline disseminating information, and I write carefully, often with her approval first. Al says it’s still good to ask for prayer, so we still touch on prayer requests for brother.

We had a scare Thursday where he went to ER for chest pain, turned out to be muscle spasms. Glad it was nothing serious. He got an EKG to check out his heart, and since we had recently talked about heart healthy foods, he realized it’s scary to get a heart attack, even in 50 years. We reassured him that it takes 50 years of bad habits to get there, and then he looked at me and questioned how long I’ve been eating bad. 😅 Then he wanted a salad. So I ran out and bought ingredients and made a salad. I’m not going to poo poo on his health kick!

Alyssa’s procedure went well, after another migraine at 1am that thankfully cleared up with medication, ice pack wrapped around her head, cold water, Mountain Dew, and more sleep. Her procedure was done quickly, TWO bumps were discovered and sent to pathology (most likely nothing serious but just in case), and she has an antibiotic oral rinse. She has mild pain that is being managed by Tylenol and has one stitch in her mouth and she’s pleased. Stitch untied in a few hours, but doc said it’s ok and expected since tissue was so superficial. Stitch string should dissolve away in a few days anyway. Her wound was sealed. She is now eating soft, bland food for 3-5 days.

Alyssa’s ophthalmologist visit went well, as expected. It is a routine visit to monitor her eyes, as she is at risk for some problems such as drusen, due to protein depositing in her eyes, not just her kidneys. This is not an urgent concern, as she does not have advanced renal failure and heavy protein deposits, as she is in early stages of her condition. Also, we watch for glaucoma, as she is on prednisolone.

Thank you for the offers for meals and help to babysit and reaching out for encouragement. I’m going to have to pass on a lot of these because I find that coordinating receiving these is more stressful than helpful. The best way to help is to only text me if urgent response needed. What I really need now is rest and be able to sleep when I can. My phone medication alerts go off for everyone about every 3 hrs continuing throughout the night.

Alyssa’s diet is too difficult and limiting yet she’s an adventurous eater. She gets sad watching us eat what she can’t eat, so it’s easier to just cook larger amounts according to what she can eat and eat along with her. Brother also has a peculiar diet due to his soy allergy that he’s not grown out of yet, plus he’s very particular with textures and temperatures. Explaining these in detail sucks the life out of me faster than watching Al’s scary shows.

But you know, my situation isn’t even bad. I actually have time to write and rant. Friends who have more medically complicated children have a very heavy, unrelenting burden and need home nurses or other regular support. Here’s an interesting article about their kind of struggle since the pandemic. https://www.nytimes.com/2021/06/04/health/nursing-shortage-disabled-children.html.

She got 3 vaccination boosters, for meningitis and pneumonia. She was upset with me that I mistakenly said it was one shot, but it was three. We weren’t sure if her immunosuppression would prevent her from responding appropriately to these vaccinations, but later that night she felt ill. Hopefully the COVID vaccine will be available soon for her and her brother in early November. And then the flu vaccine. And then the COVID 2nd shot. And since she’s immunosuppressed, she may need to test for antibodies and possibly need a 3rd vaccination. It’s a lot. Shots makes her stressed and sad for the day.

She’s had a couple more migraines. She cried a couple nights, and then cried more because she felt guilty for waking me up. I comforted her, and reassured her that I’m happy to help her, and that migraines make you dumber, slower to make good choices, and feel unnecessarily guilty. And I used to cry in bed, crippled by guilt and unable to ask for help too. Even now, for experienced me it’s like, “I think I have a migraine. (Suffers stupidly and silently in pain for a couple hours.) Oh. I should take migraine medicine.”

She saw an ENT doc, that thing in her mouth was a mucocele, which is a cyst that contains mucus, (good call Grace), and she is now scheduled for a minor surgery to get it removed in early October. She will get dissolvable stitches and be on a softer diet for like 5 days. Annnnd her diet is to be adjusted again.

Brother also is going to get a minor procedure done in early October, but it’s enough for him to miss school for a week as he recovers. Prayers and his privacy appreciated.

Charmin is probably no longer enjoying her life as she’s still declining from her end-stage cancer. She may be gone within the next week or two. I hate this slow inevitable end that I am helpless to change the outcome of.

I am tired. Long nights and stress is adding up.

Al’s work is getting busier now too. I dunno, maybe 700+ applications are gonna be rolling in the next week or so, and he’s gonna be reviewing them. (Correction: 900 came in today!) Plus his shifts and director thing and lots of stuff. Fall season means less of Al and is usually tough on me. And now it’s like brewing a storm of a whole lot going on. 😬 So THANK GOODNESS my parents moved close! It’s such a nice mental break for the kids to go to gramps place and get loved on.

Al says he prayed so hard when things got hard. When we thought things were good, it was so easy to relax and take things for granted. So God brings us back to our knees, keeping us humble and reminding us how much we need Him.

We saw her nephrologist (kidney doctor). Doc said this last number of hers was typical improvement for kidney function, and that her previous abrupt “normal kidney” numbers were odd and that she wasn’t sure what to make of it. So… yay? 🤔

She is starting cholesterol medication, a tiny daily tablet. So with she’s gonna have to swallow this, and overcome her fear of swallowing pills. FINALLY. I approve! Ha ha ha! 😜

There’s something on her lip and tongue. A bump on her lip. A sore on her tongue. At first we thought it was a canker sore, but then it grew like a chunky lump and wouldn’t go away no matter how many salt rinses or Peroxyl rinses. So we saw an infectious disease physician to check it out, since she’s immunosuppressed. Current diagnosis is both are idiopathic canker sores. Which still means… we don’t know how to deal with them. We are waiting on further test result and watching them evolve.

Now she gets migraines. I figured my kids might inherit some of my migraines, but dang it, it looks like she’s starting to be as sensitive as me. The same perfumed odors, flavors, and dehydration are triggering her migraines. When her friends asked what a migraine was, she said, “It’s a headache with feeling like you want to throw up and light hurts your eyes and everything hurts.” Nice concise description! She’s recognizing her aura as “feeling foggy.”

She’s now allergic to all bandage adhesives. Everything breaks out into a rash. Fabric bandaids are worse than plastic bandaids. For a while, those Nexcare clear waterproof bandages and Tegaderm worked, buuuut not anymore. So we now have gauze and wrap on standby if needed. We are always getting creative with solutions!

Soon she’ll see an ophthalmologist. It is just a regular checkup to monitor for changes such as protein deposits in her eyes. Currently she has near perfect vision. I call her “Laser Eyes” because of her uncanny ability to see tiny details, and I joke how she takes after Daddy. When I drop a bead, I summon “Laser Eyes” to assist me. I guess protein deposits in eyes will come with later kidney damage as protein builds up in the blood. So this is not a current concern with her kidney improvement, but it is something we have to monitor with regular checkups.

Her nephrologist is retiring. 😭 To our doctor, we extend our deepest gratitude for her excellent care for going above and beyond. We already have the next pediatric nephrologist in mind. I’m always nervous getting a new physician, but it’s a whole new level when you’re getting a physician for a rare disease that you know they likely never encountered a previous patient with it. And you’re entrusting your child’s life.

Except not really. Because everything is in God’s hands, and I keep forgetting that. And remembering it all over again.

Brother just had his allergy test and his soy allergy reduced, but doesn’t negate the allergy. Doc says it’s too soon for him to outgrow soy allergy. Could possibly be a cross sensitivity with oak/birch. or maybe he is outgrowing the allergy. So… yay? Am I supposed to still carry epi-pen? Benadryl? What can he eat? It’s a whole new cautious journey of what he maybe can tolerate. Or does this change nothing? No, it does change because his reaction on the test improve significantly since 4 years ago. Whatever. I’ll take it as some form of progress and a yay. YAY! 😂👍

Charmin, our dog, is still happy with her life. She can eat with the help of pain medication, but is starting to vomit daily. She getting scared to sleep alone, as she is starting to do the long journey upstairs, so I’ve started sleeping on the couch to keep her company and safe downstairs. We are giving her lots of TLC (tender loving care). I look for wisdom in knowing how to make her most comfortable and knowing when to make the call for euthanasia. This was a good article on this topic. https://graceparkanimalhospital.com/lupins-life-saying-goodbye/

Lots of little mysteries. I don’t know. God knows. I know God knows. And I know God loves us. So I’m gonna try to let go of my next panic attack(s) and say the Serenity Prayer.

God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Charmin, our 14 year old dog, has liver cancer that has spread to lymph nodes. It is a large, aggressive cancerous mass (11cmx12cmx9cm) that is resistant to chemo. She is now on palliative care. Al estimates less than 2 months left. Vet says let’s take it week by week.

Al told the kids. Kids asked several questions about why we can’t do surgery, then nodded, understanding since we had already gone through this all in January with our other dog Q-Tip and when we had to put him down. Currently this news has been hardest on me (Mom).

For other pet owners who ever have to face this awful moment, “Lap of Love” offers vet services with home hospice and home euthanasia that is compassionate, caring and helpful, especially in a COVID era when you want your family to be there.

Alyssa got more routine lab work done. Sadly, kidneys are not looking normal anymore as more protein is leaking again. Al reassured me to look at the bigger picture, that her numbers will go up and down and that it is good as long as the overall trend is improvement. So again, we hold our breaths and wait again for the next doctor visit and next lab tests on another 6 weeks. Even with this leaking again, if I look back, this still would have counted as the tremendous improvement I was hoping for.

Alyssa is starting to get mosquito bites and asking questions about what will happen now that proteins are leaking in her kidneys, or if she gets infected. So please pray for her peace of heart as she wrestles with worrying about her health.

It’s hard for us to look for the bright side, when we thought things were good and now disease has returned for both Alyssa and Charmin. As someone once told us, we have choices. So we look at these moments and try to choose: will we be consumed by grief about Charmin’s prognosis or be thankful for these days and cover her with love? Will we remain discouraged about Alyssa’s numbers or turn to God and walk in faith? Ok honestly, I’m trying to look on the bright side but I am in a weird swirly mix of dark moments and bright moments.

This is my struggle and heart’s desire, these verses. “Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me—practice these things, and the God of peace will be with you.”
‭‭Philippians‬ ‭4:4-9‬ ‭ESV‬‬

We are still so happy about her kidneys recently improving to normal function. There are other labs and measurements of this rare disease, and nothing has returned as impressive as the kidney improvement, which was our major practical immediate end goal. So we still watch and hope and pray for continued improvement of all labs, for the sake of maintenance of her kidneys and rest of her body. If all goes well, then she continues to head towards remission, which is our best outcome, and after that we wait and monitor indefinitely until she gets sick again like flu, cold, COVID, anything, and the cycle starts again, and hope and pray that the medicine works again next time.

School started. She’s thrilled. I’m nervous. But realistically for us, it is not just COVID. It is every sickness that can restart her condition to dumping proteins in her body. Covid is a bit more complicated for her. She is under 12, so she is still not yet vaccinated. Her medication makes her immunocompromised, which unfortunately also means the vaccine may not be as effective in her. FDA approved a 3rd COVID vaccine to immunocompromised adults. So, it will take a while before she miiiiight be vaccinated against COVID, which unfortunately is mutating faster than kids’ vaccines are being dispensed for her age. Can you imagine when young immunocompromised children under 12 will get that 3rd vaccine? Ha. And by then, maybe COVID kappa or omega will be out. Disclaimer: I’m making up “COVID kappa or omega”. My point, it may be years before she’s truly vaccinated against COVID. I can only hope for the rest of children to get vaccinated, or for her to achieve remission and reach age 12 to get regularly vaccinated like a regular person. We can’t wait indefinitely for this. Remote school messed with her mental health. Al reassures me and says to keep doing what we usually do, mask, sanitize, be careful, and she should be fine. I pack an extra wound kit for her, send emails to the school staff, pack spare masks and hand sanitizer, and remind the kids to be careful. God showed me He had her before, so I take a deep breath, a leap of faith, and pray hard.

HER KIDNEY LABS ARE NORMAL! Like not just a little better, but like miraculously rocketed past hundreds of proteins in her urine down to single digits, which is normal range. Normal! I would’ve been happy with just a slight improvement in kidney function, but this is beyond expectations. To be honest, I didn’t even know normal kidney function was possible. I was hoping for stopping getting worse or slight improvement, but this…! This!!!! I am astonished. If I hadn’t seen her clear urine sample with my own eyes, (usually it’s a disheartening cloudy sample), I would question if there was perhaps an error in labs.

This does not mean she is cured or stops medication. This simply means that this is a good sign that her medications are working. If all continues to go well, then she continues to head towards remission, and around November she can stop taking prednisolone, and next year possibly stop taking all medications. She would still have to be careful about getting sick, as any sickness can restart the overactive immune response, and the dreaded proteins being dumped in her body that can hurt her kidneys and eyes and more.

I cried. Al got choked up. Brother said “I didn’t cry. I closed my eyes and squeezed water out.” Al said, “That’s crying.” Alyssa mostly stood stunned, soaking in our reactions and the moment. We thanked God. Yet again, God surprises me beyond all expectations, and I am humbled, broken, and thankful. We share our good news and thank you for your loving support.

Alyssa asked me three times, “Mommy, did you struggle with faith?” Finally I admitted, “Yeah, I guess?” What’s the difference between hope, belief, and faith? I ended up recently explaining it to the kids like this. “If I said to jump off the bed and that I’ll catch you, would you?” They know I’m out of shape and each kid weighs 70 lbs, and they instinctively know I mean a full fledged flying squirrel jump. The kids hesitated. I continued, “You would HOPE I would catch you, but you don’t really BELIEVE I would catch you well, so you wouldn’t feel safe jumping. But if Daddy was going to catch you, you would totally jump, because you BELIEVE he’s got you, and so you can ACT on it. That is FAITH. You have FAITH that Daddy will catch you. You also have FAITH something will go wrong when I try to catch you.” 😂 But did I struggle with faith? Yeah. I did. Because I honestly didn’t even know normal kidney function was even possible, much less so abruptly like this. Jesus asked Peter “Do you love me?” three times. It was a drilled in question and point. Ironically Alyssa asked me three times, “Did you struggle with faith?” and I know this is a drilled in question and point. I know this is God’s voice through my child. And yes, I did struggle. And I am so beyond humbled. Then I asked back, “Alyssa, did you struggle with faith?” “Nope,” she replied without missing a beat. “Did you think this was going to happen?” I asked. “No, but the only time I’ve ever struggle with faith was when the dogs were dying. But I’m ok now, because Charmin’s so much better.”

Alyssa will have her blood test next week. The blood will be sent out, and we will have an appointment with nephrologist in a couple weeks. Please pray for this appointment. We hope her calcium will be higher, her cholesterol will be lower, her blood pressure remains lower, and that the protein in her urine is lower. It is still early to be hopeful of her kidney function to improve (ideally see results by 3 months), yet we remain hopeful. This appointment will possibly add another immunosuppression medication and also determine if she needs to start a medication to bring her cholesterol down.

She is handling her current medications well. The moodiness is not as bad as before. She is adjusted to the low salt diet, and doesn’t mind as much. She is also much more agreeable about eating healthier for her cholesterol, which is nice.

She said this was one of the best weeks (emotionally). She lost a tooth, my parents moved MUCH closer, her best friend returned from vacation and got to see her, we got to see fireworks from our car, she made slime, and more. Al caught her a couple monarch butterflies, they got busy, and in a couple days we had 40 eggs! We can’t feed them all, so thank you to everyone who took most of them. They’ve been growing quickly.

I have no medical updates.

Considering she’s not feeling sick at all, you might be confused as to how we started to find out in the first place. Here’s the short story.

3 years ago we went to the Emergency Room for something else, and she got a full work up. Turned out she had constipation. The urinalysis at the time showed traces of protein and blood in urine, so we were instructed to follow up on that. Our pediatrician explained that it’s common for kids to have protein and blood in urine up to 6 months after an infection, so we should test her after 6 months of no infection. As we were following it, the proteinuria was trending upwards despite her not getting sick, which prompted further blood tests, and then the biopsy.

We consider ourselves fortunate to have caught this early, before any manifestations of symptoms that would have suggested permanent kidney injury.

My anxiety is smoothing out slowly with each step. We got to see relatives over the past couple weeks, some of which was the first time since Covid hit. It was a cautious leap of faith, some of which took months of rescheduling because of colds. But to hang out again was great. Seeing my in-laws was comforting. Seeing my brother’s family was stunning, as his kids are now no longer smaller than me. But teens are never too cool for us to still share ridiculous random stuff with them, like that nasty YouTube video of pouring soy sauce on a freshly killed octopus before eating it, to make it dance again. And my mom squeals and slaps Al’s arm, my dad grimaces, and we all laugh. It’s good for the soul.