‘Preparing our 11 year old for SJIA (systemic juvenile idiopathic arthritis) treatment.’
I have no idea what stage of grief or the sadness process I am currently in, but I’m pretty sure its the hate phase. Never in a million years would I have thought that I could hate a disease more than the one I live with, but I have.
I hate that my sweet baby girl has to go through ANY of this.
I hate that her perfect little life is now forever changed.
I hate to see her in pain and scared and confused and overwhelmed.
I hate to see her fight to get out of bed in the morning.
I hate to see her crawling up the stairs.
I hate to see her trying desperately to walk normal.
I hate to see her struggling.
I hate feeling helpless and completely powerless.
I hate that I can’t protect her from this horrendous disease.
And more than anything…
I hate that Makena is no longer the same Makena she was just a month ago.
As we prepare to begin this painful & God awful biologic treatment this week, our family continues to pull together, stronger than we ever have before. We are currently in a holding pattern this week though, a short lived calm before the next storm(s) rage. While we wait for the medication to arrive, the family is simply trying to hold it together. Emotionally, physically, mentally we are all drained. Makena’s fevers are more or less under control now (below 101), but rashes are still an everyday occurrence to one degree or another. No real rhyme or reason to when or where they appear, but they gradually get worse as the day progresses. In the morning, Makena may only have a few spots here and there, but normally by the end of the day Makena is covered in the rash.
The disease also continues to attack her little joints and muscles, sometimes causing very visible inflammation & swelling. On her really bad days/nights you will usually see daddy carrying her upstairs. Most of the time though, Makena doesn’t want the help and will crawl or hobble up the best that she can. I usually find myself watching her out of the corner of my eye though, kind of like how I watch scary movies… I can’t stand to watch it, but I know I have to keep my eye on it all.
We also have a new nightly routine. Upstairs, hot epsom & essential oils bath, comfy PJ’s, daddy rubs her back and “tickles” her head, then once I get out of the bath I massage Makena’s feet, legs, hands, and arms. Any bit of comfort and calm we can give her, rest assured… we are doing it. I only wish there was more we could do to soothe her aching body and make her feel safe from this.
Additionally, each day we seem to be faced with yet another challenge. Of course I didn’t expect to find a “new normal” so early on after diagnoses and now I’m not really sure that we truly ever will.
One example shown here… Makena is a serious arts & crafter. She’s into duct tape crafts, paper crafts, jewelry making, painting, and anything else you would find at Hobby Lobby or Michael’s. You could almost always find Makena on the floor with things spread out all over the place. She could spend hours absorbed in a new project. However, a few days ago while she was on the floor working on a new duct tape wallet design she stopped about 5 minutes in and brought her cutting board and supplies up to the dining room table.
When I asked her why she was moving her “work station”…
“Because it hurts my legs too much to sit like that.”
For some this may not seem like a big deal, parents wouldn’t give it a second thought, but for us? It hurts to know that Makena is having to make all of these small adjustments just because of this disease. Things she could do before with ease just aren’t that simple anymore. She doesn’t complain about it though, but just knowing its something she even has to consider… hurts our hearts. Kids are supposed to be able to play on the ground without a second thought about how they will get back up or if it will hurt their legs too much in a seated position.
And like I said, something I hate the absolute most about this is she is no longer the same kid. She tries to smile and laugh and be “normal” sometimes, but there is no doubt Makena is different. Her smile is different, almost forced now. Rarely will you find her making jokes or laughing like she used to. Any chronic pain/illness sufferer knows what I mean. Nearly EVERY SINGLE thought in your head somehow revolves around your disease. You can no longer just “do” or “be” or “live”. You are either in pain, worried about when the pain & symptoms will start (because you know for certain that they will), cautious about your activity because at some point your body simply just won’t do what your head thinks it can, don’t want to get your hopes up for a good hour or two you have had. Aside from the 24 hours pain only you can feel and describe, you thoughts are completely consumed by your disease.
I had asked Makena a couple of days ago when the last time she did a “Musical.ly”. This used to be something she would do MULTIPLE times a day… if she wasn’t at school, at practice, eating, or crafting you could ALWAYS find her filming herself on the app. Her answer to my question ripped my heart apart.
“I don’t know. Maybe about a month ago? I just don’t feel good.” and then quietly said “I don’t want to do it anymore because of my face.”
Oh the tears. I can’t even type it now without my heart breaking all over again.
She’s so embarrassed when the rash fills her beautiful face. She’s self conscious about the “raccoon eyes”, very pale & flushed skin, and rash that always starts on her cheeks. Now when we are out, you will constantly see her trying to peek at her face anytime we pass a mirror or glass. She examines herself and if she sees the smallest little red mark, Makena immediately asks to leave wherever we are and whatever we are doing to go back home. She used to love just being “out”, now its just too hard for her on so many levels and can’t wait to just get home where she can curl up on the couch and hide from the world.
There are no words to make ANY of this easier for her (or us). No “new normal” in sight for us right now. Even after spending countless hours researching, speaking with other SJIA parents, and hearing the success (and failed) stories we know we are still at the very beginning stages of this journey. Onset is well on its way and the disease has begun a full fledged attack on Makena.
Even after choosing a treatment protocol for her, we were still not in the clear to begin anything. Because “systemics” (thats her new name with doctors) are at such high risk to develop complications with their organs, Makena needed to be cleared by a LONG list of additional testing, specialists, and new blood work. And due to the urgency of her condition, she needed to do ALL of it last week in order to begin immediate treatment.
Stop 1: Hematology & Oncology
Oh my sweet girl… she’s trying so hard to smile for my ridiculous picture….
Review of blood work, physical exam, neuro exam. Easy peasy, I guess.
Unfortunately, we left the office under the impression that Makena now may also need a bone marrow biopsy. She of course had no idea what this meant, but knew it must involve needles. Joe and I on the other hand went full panic mode. Tears, tears, and more tears I had to hide. We were told by the oncologist that she would be checking with her rheumatologist if Makena would need to have one done. We left the office quiet and again in our own scary thoughts. Makena was just happy that one appointment was out of the way and so far the day didn’t include any needles.
Stop 2: Infectious Disease
This was a fairly quick and painless appointment. We went over the possibility of TB mainly. Nothing major to report here except the doctor was requesting one additional blood test to rule out if Makena has ever been exposed to TB. #1 systemics are prone to lung issues and #2 if she has active TB, treatment could not take place. Blood work and chest Xray ordered.
And in true caring Makena fashion, she wanted to write a little message for the next kiddo to see in hopes it would brighten their day!
Stop 3: Chest X-Ray
Stop 4: Cardiology
Again, because Makena’s heart is now at risk of being comprised a echocardiogram would be required to begin treatment. Fortunately this was painless… just a bit scary for her since she had no idea what to expect.
Stop 5: Repeat & New Blood Work
Seeing oncology was bad enough for Joe and I because, well, its oncology after all. Nobody wants to hear the word oncology, let alone actually visiting one. However in the grand scheme of everything that needed to get done last week, another blood draw was definitely what we were ALL dreading the most. When Makena realized why we were going in, panic set in and another full blown attack commenced. There is no consoling her, no rationalizing, no comforting. Just all out fight or flight.
Oh the fear and progressively increasing flow of tears…
17 MORE blood tests. 17 on top of the 36+ she’s already had to do in the past 2 weeks. Seriously, the most heart traumatic hour yet. 1/2 hour waiting for our turn, 15 minutes during the draw (17 vials on little veins takes quite a bit of time), and then another 15 minutes post draw while she recovered from the needle & blood trauma.
Do you know how many times I wanted to jump in and just say “No, take my blood. No, stop. No, thats enough. STOP. Let me have this disease. Let me deal with all of this. Please, why can’t it be me?”
We walked out of the lab highly emotional, drained, tired, and again… ready for this nightmare to be over. Words will never be able to express the feelings parents have when their child is confronted with so so much. One day you are looking forward to seeing your kid await Junior Olympic Volleyball Nationals and the next you are helping them walk or asking them what hurts (because you already know ‘something’ does) or seeing five different doctors in one weeks time.
I adore this shot I took on the way home from the hospital… my emotionally and physically drained 11 year old dealing with something no child should ever have to deal with. Makena is being confronted with situations and emotions that adults would even have a hard time processing. Her innocence and age are shining bright here as we still find her holding on to stuffed animals for a bit of comfort. Yes, she sleeps with a handful of them as well.
Can you believe ALL of those “stops” took place within a few days time? Back to back to back appointments, tests, and lab work. And it wasn’t even over yet for her. One last stop back at Rady’s Children’s Hospital to see Dr. Sheets, her rheumatologist. Since he will be on vacation this week, Dr. Sheets wanted to see her right before he left to examine her and follow up with all of the lab/test results.
Quick exam, checked her joints for swelling, did ranges of motion on her limbs, went over all of the results, and we were now officially cleared to begin treatment! Medicine is currently en route for an overnight delivery. Due to the unique type of biologic medication, it needs to be sent almost direct from the pharmaceutical company, packed in ice/frozen packs, with clear instructions for use & care. This ain’t cheap stuff either. Depending on the biologic therapy, cost on medication is anywhere from $1,000 to $19,000 PER dose.
Yeah, you read that right and Makena will need to be in full treatment for a minimum of two full months. We won’t even know if the medication is helping for two weeks. Even if she responds well, we won’t even be able to change dosing for two full months. At that point, we may have the option to space treatment out a bit… so yeah, treatment is indefinite at this point. Really pharmaceutical companies?
$19,000 for ONE treatment and these kids need it regularly for months and years? You make me sick…
Like I’ve said before…
Yet despite Makena’s new set of challenges and being traumatized by all of this she continues to surprise and amaze us. I know every parent thinks their child has some form of super powers (being smart, being kind, being compassionate, being funny, having EXTRAordinary qualities, etc.), but I will never be able to properly express how proud we are of this little girl.
Aside from two extremely emotional breakdowns, Makena has dealt with ALL of this like a champ. A serious super hero kind of champ. She wakes up EVERY morning tired and in pain, but still pushes herself to get ready for school. Because things take her a bit longer now, she even requested to have her alarm set earlier to make sure she has enough time to get ready. She wanted to try and I was not about to stop her! There have only been 1-2 days that she pushed herself to go to school, but ended up calling home a couple of hours later saying it hurt too much to sit and move and be at school. On those days or days she has had to miss because of appointments, Makena comes right home though and does ALL of the work, not even a question or hesitation. Not one assignment missed and every test made up by the following day.
What amazes (and scares the crap out of me) is her determination to still try and attend volleyball practice. Like I said, some moments she can’t get herself up the stairs but she still wants so desperately to hang on to volleyball. Her doctor has given her the go ahead for activity as long as she can tolerate it. It’s actually highly encouraged which was a relief to all of us because of her pure love & joy for her sport.
The other day when she got home from school I asked her what she did at recess and lunch. She responded with “Oh nothing! I try not to do anything on Monday and Wednesdays at school.” Initially I thought it was a bit odd, but when I asked why just those days she said “Well, those are volleyball days. I need to try and make sure I’m saving my energy and body for practice!”
Good God. Another stab in my mommy heart…. I know what its like having to prepare and save yourself for certain activities, trips, and outings but never would I expect my 11 year old would have to do the same. It’s just so unfair.
Another downside to letting her continue with volleyball on days she’s more able though is seeing her in pain the ENTIRE practice. We continue to see her diving all of the place, chasing down shanked balls, giving 110% effort (in true Makena fashion), and working her poor little body harder than anyone else on the team. It’s not until the play is over that anyone would suspect there was anything at all wrong with her. Without fail, after a dive she will SLOWLY get back up and hobble back into position. While waiting for a play you will also often see her rubbing or shaking out a limb or joint. And since our practice time is in the evening, you will also see Makena become more and more aware that the rashes are getting out of control. She will constantly give her arms, hands, and legs a quick look to see how fast they are starting and how botchy she is becoming. Then in a huddle, you will find her hanging in the back of the group, hiding her face or covering her arms.
Its at these moments I can’t help but cry quietly to myself. So much fear, yet so much pride in this little girl. We don’t want to stop her from something she loves so deeply or continue to take things away like we have had to the past month because of her condition (missing school for appointments, being with her friends, her class Valentine’s party, spending time with her friends, doing fun things with the family), so if she feels like she’s well enough to go to practice… we reluctantly take her.
After practice she slowly limps to the car, rests her head on the seat, curls up her body, and closes her eyes. I know all too well what she is thinking “Why? Why me? How? How did this happen to me? Why can’t I just feel good? Why does my head tell me I can do something, but my body won’t let me? Will I be like this forever? Will I have to give up playing? This is so unfair.”
Yes baby. Yes, this is more unfair than you realize right now.
Once we get home, all Makena wants to do is lay down. She needs at least 20 minutes just to do nothing before its time to get in the bath. Doesn’t matter where she is in the house, she just curls up on the ground and collapses.
Yet despite so much pain, change, and adversity sometimes we manage to crack a real smile or giggle. They are few and far between now, also short lived. But its in these brief glimpses my heart smiles as well. For those very split seconds Makena is not consumed by her disease. Even just for 10-15 seconds, the fear and pain go away. Oh how I dream I could wish on a thousand stars for all of this to be over.
The last stop before we begin treatment tomorrow was to visit orthopedics. She was given braces for her ankles, knees, and wrists!
Although the braces do sometimes help and provide some relief when she’s up and moving, they do make school and practice a bit difficult. We NEVER have any idea what joint will be effected or when or to what degree. One day she may go to school wearing a knee brace, but the next day it may be her wrist. The following day, her other knee and ankles may hurt. A couple of days in the past two weeks she really couldn’t walk at all and had to bring crutches to school. Since Makena is very adamant about not telling her class or her volleyball team about her medical condition, it makes the explanation more difficult. While we respect her decision, its hard to sit back and hear that kids are questioning her braces, talking behind her back that she’s faking it, and constantly pointing out her rashes.
So much for an 11 year old to deal with…
Tomorrow is a big day for Makena and our family. Tomorrow at 1pm we make our way to the hospital for her very first treatment. We have no idea what to expect (outside of a panic attack and many many tears), no idea how her body will respond, what type of reaction she will have… nothing. Totally clueless and in the dark. The only thing we know for certain is these injections are PAINFUL. We have been warned over and over again that they will most likely sting, cause swelling, bruising, and possibly an allergic reaction for up to 2-3 weeks.
This is what we can anticipate after each treatment…
Have I mentioned how broken my heart is?
Please please please let treatment provide my baby girl with some relief. Please let it work like its supposed to. Please let us have picked the right treatment plan for her. Please don’t cause more damage. Please make the pain stop. Please give “Makena” back to me. Please give us remission. Please let this be a very short lived moment in time we look back on and think “Remember that time you had…”.
CherylFebruary 23, 2017 at 7:27 pm
Oh Corina my heart breaks for you as a mother having to watch your baby girl go through this horrible disease. Prayers for the treatments to help her, prayers for comfort for her, prayers for your family as you help her deal with this and as you also deal with it and prayers for wisdom for the Drs.
NatalieFebruary 25, 2017 at 4:56 pm
My husband has severe ulcerative colitis and we know all too well the pain that comes with autoimmunity/disease. Biologics were our only recourse as well. It’s heart breaking, life altering and expensive. 🙁 I’m praying for your sweet girl and your family.
BrookeMarch 15, 2017 at 10:03 am
I know you via the Tarlov site, but has she been checked for Lyme disease? If it were autoimmune, steroids – an immunosuppressant, shouldn’t have made her condition worse. I’ve seen joints like that and rashes like that. Get her checked for lyme with a proper test. Hospitals and allopathic doctors will lead you down a rabbit hole of heartbreak and take all of your money. Just went through this myself and I have lyme. Good luck
corinaMarch 16, 2017 at 3:15 pm
Hello Cyster!!! Definitely not lyme. Her rash and symptoms match SJIA completely! The first few doctors weren’t sure, but 15 minutes with her juvenile rheumatologist and he knew. Prednisone didn’t necessarily make her “worse”, she just didn’t improve. Most children with this disease take upwards of 60mg a day for weeks, months, and even years… she was only given a 35mg taper so it stands to reason why they didn’t help much! Thanks for the suggestion though and caring enough to share your thoughts! XOXO
Rebekah SmithMarch 20, 2017 at 10:50 pm
Thinking of you. Update us when you can!!!
JenniferMarch 25, 2017 at 7:33 pm
Thinking and praying for your family xoxo
Laura A ValenzuelaMay 12, 2017 at 4:08 am
My daughter is going through the exact same thing. She was diagnosed March 26, 2017. She had her second dose of ILARIs yesterday. This morning was the first time in months where she didn’t have a rash. I missed what your daughter is taking, how is she now?
Ashley (me)August 7, 2017 at 1:40 am
I am going through this with my son right now. He’s four. We have completed 50 blood tests. We are now referred to Infectious Disease, cardiology, Sleep doctors, and rheumatology. My heart is broken just like yours. We are scared for the future. How much sicker will he have to get before we get to start treatment is my biggest concern right now. Very very worried and afraid. Thank you for posting. I’m sorry your baby has had such a tough time.
corinaAugust 25, 2017 at 3:15 pm
My heart goes out to you! The key is getting diagnosed and beginning treatment as soon as possible. We were extremely fortunate to have been referred to our rheumatologist who started aggressive treatment immediately. Our girl has done extremely well though and we even started weaning off Kineret within a couple of months and are now our daily injections are every 3 days!!!! I will keep you and your son in my thoughts. Please let me know if you have any questions! XOXO