Thankful Reflections of Our Continual HOPE

The house is quiet and still as I reflect on our JA journey thus far.  This has definitely been the “road less traveled by…” On our voyage, we have met the most amazing people, witnessed the deepest strongest random acts of kindness, been touched by supportive and energizing love, and through it all, our hearts have been overflowing with hope each step of the way.  Truly all these blessings are multiplied over and over again as we meet children and their families who ride alongside us.  And for those who choose to continue to love and support us, your lives are also forever touched by the beauty that JA can bring…

Yes, I said “beauty”…so many open and loving hearts pour out that beauty and as much as I try to explain it…this beauty can only be felt…it is indescribable.  Our family has experienced immense pain…we know of children who have passed away with the form of this disease that Parker has…Parker has processed those questions and concerns about death.  He has talked about heaven and being “pain-free” with no more sticks, swelling, over-taking fatigue, and being able to “play like other kids”.  That is a very profound thing for a family to discuss but a healthy discussion when it is a real feeling.  Parker has been as positive as possible through all of this and his wit and smile are contagious.  Those of you who have looked in his eyes know exactly what I mean.  Our struggles with JA have allowed us to feel true beauty.

For more than 2.5 years, we have made our two and a half hours ride every other week up to the hospital for Parker’s treatment and medical care.  For about four years, systemic JA has attacked our son.  We are joyfully sharing that we are witnessing PROGRESS!  Parker’s doctor has figured out a way to get his IVIG infusions at home.  This Sunday will be his third weekly infusion and last week, with the changes that were made, I am happy to report that he did not have an allergic reaction this time.  His weekly shot of Rilonacept is also doing what we had hoped…it is really beginning to calm his JA down. 

Since starting the RAPPORT study on Rilonacept, Parker’s intermittent fevers have ceased.  We are seeing less skin rashes too.  And in the last 2 weeks, we are also seeing less swelling around his joints, especially his ankles, and his vasculitis is less intense.  This progress has allowed us to start decreasing his steroids (after 2.5 years on them) and Parker is walking more and more.  And once he got past the “placebo” phase of the study, this disease has stopped viciously attacking his internal organs.  I know study drugs are scary…because we don’t know long term what the drugs do.  Our family has chosen to “live in the moment”…we KNEW the disease was attacking our child’s body in a very fierce way…Parker’s doctor recently mentioned that if we hadn’t done all these biologics (even the ones that didn’t “work good enough”), she is pretty certain he would already have contractures…and I hate to even begin to think what it could have done to his heart, lungs, lymphatic system, intestinal track, vascular system, muscles, skin, and who knows what else because nothing is the body is immune to systemic JA.  It is a very mean beast.

Some other celebrations since the RAPPORT study and reintroducing the IVIG infusions that you will be excited to hear about are:  Parker has bravely spent the night at a friend’s house and is planning to go to another friend’s house this Friday night.  He has not been doing sleep overs for the past 4 years.  We have to also be thankful to these families who invited him over because I know all his meds are a bit overwhelming J.  He is going to finish the year out with hospital homebound as we work on getting his levels up some more, but he is really talking about starting high school AT school and the principal is being quite supportive about meeting his needs.  This is humungous.  Parker is also able to maintain longer conversations…I know that sounds like a crazy thing to celebrate, but now he talks with his enthusiastic fun-loving voice again.  He is engaging, excited, and more energized.  It is such a beautiful voice to listen to.  There are also other, simple things, that most take for granted…but not us…Parker can cut his own food again, can shower independently these last 2 weeks, wants to try going to an amusement park again, can dress more often without our help, can eat without intense stomach pain nor food getting caught up in his throat, gets excited about “parties” again, is having less nightmares, is asking to have friends over again, and he seems to be getting stronger muscles.

We know that this journey continues for Parker and it is likely to be ongoing but we are so very proud of his strength and bravery.  Do you know that he is even sticking the 3 needle probes into his own stomach for his weekly home IVIG infusions?  WOW!

Someone once told me, during one of Parker’s hospital stays this last year, that they didn’t like the word “hope” because it didn’t sound certain, definite and that “faith” was a better word to use when you have a child with chronic illness.  I have reflected on that statement for about a year and I am pretty certain that “hope” has been the perfect word for OUR family.  Hope has kept us going during much uncertainty where nothing has seemed to have a definitive answer.  And during a year of what seemed like endless uncertainty, we are certainly thankful for much… And we will continue to faithfully HOPE!