My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Thursday, October 4, 2012

It will all be ok in the end.....

For the past few months..... we've been trusting that all will be ok. Our family had a bump in the road, as we like to call it and have been focused on helping my mom beat breast cancer. We've been thinking positively PINK since May and am happy to share my mom is beating her second round of breast cancer.

Briefly, while my parents came to FL to watch all their granddaughter's dance recital in May, my mom had her annual mammogram. A suspicious lump was found and it's been a hard road since that day.  My mom is a breast cancer survivor of 22 years, so to go down this road again.... was just frightening. She had a double mastectomy in mid-July and is still gaining her strength and getting prepared for next phase- reconstruction surgery on December 5th.  Our family was fortunate enough to still be in FL and just shy of 2 weeks from moving to TN. Trusting God that he had a different plan for our family to move... We wouldn't trade our time with Grandparents for anything.... Hannah and Jake have both been a huge support in my mom's recovery!

2012 JA Conference
Happy Campers at Camp Boggy
Our summer was busy and flew by so quickly. There were days I didn't know if we were coming or going. We managed to take brief trip to TN to bring back a few necessary items and clothing and close up our TN home.   A week at Camp Boggy Creek and the annual JA Conference in St. Lious was Jake and Hannah's summer highlight.  The friendships that are made at camp and conference  are priceless. Their isn't a day that passes that we don't talk about our new friends, send cards, emails, and facetime each other to keep in touch until next gathering. Before we could barely blink...it was time to get back into the groove of school.

Back to Fall  was a simple transition.... no stress on changing physicians or getting to know new community or finding a new church home.  We are continuing homeschooling Jake and Hannah  through Polk County Hospital Homebound program. It has really worked great for our family and appreciate the time and effort  our assigned h/h teacher has provided for Jake and Hannah. Hannah has really flourished in 2nd grade and Jake continues to LOVE to learn. They are a joy to homeschool and I wouldn't want it any other way.

We are disappointed to share that Jake and Hannah both are finishing up their final infusions of Actemra.  They both have been getting Actemra infusions every 14 days for the past 15 months. It has not been a perfect drug, never experienced remission or close to it, but did certainly help to manage their  disease in some ways, along with other modalities of treatment.  We have tweaked it as much as possible, adding second Biologics (Enbrel), joint injections, maximizing dosages, and increasing steroids. We have been told....Actemra has lost  it's effectiveness after antibodies built up and it simply is no longer effective for Jake and Hannah.   I knew this in my heart..... Jake's fevers have returned almost every evening. Jake and Hannah both have inflammation in many joints ( toes/knees/wrists/fingers/chest/ ankles). I often hear complaints about achy hips, shoulders, backs,jaws and NECKS! Last month was a hard day.....while both kids getting infusion, MD shares they have both failed Actemra and it was time to move on and try something else ??

Actemra infusions coming to an end.. wish there was more drug options.
Changing drugs is so hard..... Unfortunately, there is nothing else NEW for Jake and Hannah to try. I hate that we have exhausted all the current drugs available and now grasping at whatever....  So we have a tentative plan to go backwards and try a combination of two biologic's and wait and see.... Not really sure which drugs it will be.... Dr. S is TRYING to get Jake approved on a type of drug ( Rilonacept) that is currently in a closed drug-study and not yet approved, but hoping because of frequent fevers it can be approved as a fever syndrome drug. Possibly trying it as a combo with Rituxan infusions, as well.  The final decision will be made next week pending insurance approvals and review of Jake's cervical MRI report.. We were also told that Jake very likely  has ankylosing  spondylitis- Systemic type. I have not digested this info yet-- not at all! Even the thought of his spine fused together and then add it can affect all his organs. I'm trying to tell myself, it will all be ok in the end.  But with this type of disease.....when does it ever end??? The good news is that Jake is finally gaining weight and less episodes of throwing up.  He has gained 7-8 lbs this summer and we couldn't be happier with his weight gain!

   
Hannah's impetigo spots.
Hannah will also be having med changes, just not sure when and what? Hannah has been battling nasty impetigo with staph infection for past 9 weeks. She has been on 3 different ATB's as well as applying bactroban cream on affected spots. Just when you think it's gone.....the nasty spots return. The infectious disease doctor doesn't want Hannah to have any med changes until we know for sure this is cleared up and really gone! Who would ever imagine....a small bug bite would create all this. It's no big deal for the average kid to get-- but Hannah has such a compromised immune system and being on two biologic meds don't help any. She also needs to have final clearance from cardiologist before med changes can occur. We are pleased to share her heart ultra sound was good.  Her EKG's and heart monitor readings do indicate sinus arrhythmia, but nothing alarming. Hannah will be finishing up wearing  her second 30-day heart monitor next week. Not sure if we know what causes her "heart episodes", but seems to come with flare up's??  So it was discussed that we may try Rituxan and Oriencia for Hannah. ugh...... two biologic IV meds. It was also discussed to consider maybe trying IVIG.  That's three NEW IV meds-- plus Jake's two new IV meds! Needless to say-- I've been a little worried about the upcoming changes and how it will affect Jake and Hannah. Reminding myself, it will all be ok.
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Due to the recent outbreak of meningitis linked from steroid injections, I'm going to hold off on any joint injections for Jake and Hannah.  Dr. S asked if we could use ultra sound and maybe inject joints that are needed next visit.  I'm going to wait--- don't need that extra worry right now.  Jake is scheduled to have his jaws re-injected in about 2 months.  We aren't using steroids this time, going to try something new, Remicade.

So as I process this crazy disease that doesn't stop, I remind myself, it will all be ok. 


6 comments:

  1. Heidi~
    I hate that the kids have to go through more med changes, and I will pray the right one/combo will be the answer SOON. I know this journey you are on seems like such an uphill battle, but your strength and positive outlook is a HUGE blessing to them. I also know your mom's winning her battle because she has such an amazingly strong and positive support system & daughter! You are an inspiration to all the lives you touch and our lives will be OK because of beautiful people like you!

    Stay strong and faithful! Take care of yourself and your own health.
    Love you and the kids and will continue to pray for answered prayers!!!
    Nancy

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  2. Heidi,
    You, your mom, and kids are in my constant prayers and daily thoughts. I find your strength such an inspiration and you are an amazing mom and daughter. There are no good explanations for things like this, but know you are loved and I am always here for you.
    Much love,
    Rochelle

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  4. Hello!

    I've been following your blog since my daughter was diagnosed systemic at 9 months old last january. You're kids are so brave, they've really been an inspiration for me and my daughter. My daughter also has heart issues and i've been wondering if it's somehow linked to the JIA. Can I ask what her heart issue is? Mia has an arrhythmia called SVT.

    Prayers and positive thoughts from my family to yours!

    Megan and Amelia June
    www.junebugsbattlewithjra.blogspot.com

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  5. Hello! I've been reading about your kids and it touches my heart to see how strong they are! I was diagnosed with JRA at age 7 and I'm now in my 20s. It's still active but I do think it was worse when I was younger. I hope it calms down for your kids...it is indeed difficult when the drugs don't work and there aren't many options. I read that you also had JRA when you were younger...did you outgrow it?

    The pics of your kids warm my heart, especially your little girl. Wishing them good health, all the best xoxo Lily

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  6. I wish I could tell you good news, but NO, I didn't outgrow arthritis.
    Appreciate all the kind thoughts. We try really hard to move forward and push on, always hoping for better days. Tomorrow Hannah is adding Rituxan to her treatment. HOPING this will help her and not create more issues with being on two biologic meds ( Actemra and Rituxan). Jake is also adding a second bilogic, waiting on insurance approvals?? Yes- we definitely need much better medication options and more research on JA.

    Megan- 9 months old! wow- that's a early diagnosis. You musty have a great pediatrician to recognize it at such a young age. How old is your daughter now? How's she doing? Hannah has sinus arrhythmia and we are still exploring situation with heart. Her cardiac issues are very episodic. We havent been able to catch it at the right time. Specialist has recommended we take Hannah to ER next time., so we can have better chances of catching events. I actually have similar issues and always comes with RA flare-up's. Hope she's doing well now. Take care of you & your family!

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