Infusion day scheduled!

Jameson's first infusion is going to be this coming Friday, 9am!  We were told to prepare for a five hour stay at Hasbro.  I say "stay", but it's sounding more like a retreat: we were told there will be face painting, crafts, tv, a movie list to choose from, and VIDEO GAMES (I'm wondering if he'll want to come home?).  And how could I forget, free lunch for all of us!  This boy is going to be just fine on Friday. ;)  In a strange way, it almost feels like Elliott will be missing out!  We do see him attending an infusion appointment in the future, but for this first time we'll be keeping it at Dad, Mom and James.  They will pump him full of Tylenol and Benedryl (standard practice) due to allergic precautions during the infusion.  Hopefully he'll stay awake to experience the endless list of goodies!  (Or maybe the three of us will have the chance to take some much needed naps?!)


On a different note--call it hormones, emotions, weakness, living in a complete naive bubble for most of my life--I'm sort of dreading the scene in this infusion center.  It's Hasbro's hub for chemotherapy, and being a children's hospital, it's going to be really hard to take a look around the waiting area and infusion rooms.  What a dose of perspective...  We (I) really need to keep it together, mainly for Jameson.  He is a boy that reads into things; tears never go unnoticed.


We'll be specifically praying that he will experience minimal discomfort from the IV and that his new meds will be well tolerated.  Thank you again for all of the sweet blessings that SO many of you have poured out onto us, in one form or another!

Latest update

We met with Jameson's rheumatologist, Dr. Yalcindag, in the fall.  Overall, the appointment went well.  It's always a blessing to meet with a doctor that doesn't have one foot out of the door as you're discussing health altering decisions.  There has always been this rather large, shady area of grey around his "diagnosis" of JRA.  Back in December of 2009, his blood tests came back with indicators that made him susceptible to JRA.  This portion of his health remained uneventful up until the summer of 2010 when they found some fluid in his joints, but that also never went anywhere and he continued to remain symptom free in regards to actual arthritis.  September officially marked the start of his clinical diagnosis (for his joints)---and a few changes.  First, it is no longer called juvenile rhuematoid arthritis, instead it is now JIA, switching out rheumatoid for idiopathic.  I asked why this came about and Dr. Yalcindag basically said idiopathic means "cause unknown".  Second, Jameson has psoriatic arthritis (right now), a sub-category of JIA, in his right ring finger.  It is treated the same way as other types of arthritis, it just has a different appearance.  His whole finger looks almost sprained, as opposed to an isolated, swollen knuckle.  

Most of you also know that after not being able to tolerate methotrexate for the treatment of his uveitis, we started an aggressive natural approach that helped launch his uveitis into remission for 5-6 months.  Unfortunately, it was not enough to sustain, as this is a very stubborn disease.  If anything, it gave us a first hand glimpse of how this journey is going to be an up and down experience of stability and "quiet" (the term that his eye doctors love to use when he is free of inflammation), verses a calendar packed with doctor visits due to inflammation.  After his uveitis flared again this past August, a more aggressive approach (medically) had to be taken or else we'd run the risk of permanent vision loss.  He now has two uveitis specialists actively involved in his care.  Dr. Foster (Boston), will be doing his eye surgery in a few months.  Dr. Janigian (Providence) monitors Jameson on a more typical level and both are involved in controlling and monitoring his immuno-suppressive therapy.

His current regimen of immuno-suppressive drugs (the heavy-hitter drugs, as they like to call them), are not working.  After 2+ months of continually increasing his Cellcept (the low-dose chemo that he takes twice a day) to try and get him into remission, Dr. Foster found significant inflammation at Jameson's appointment last week.  His doctors monitor his blood every six weeks and as it is right now, his liver has been "crying out" a bit as we've watched his enzymes rise in response to these increases in meds.  Upping his dose isn't an option anymore, so we're moving on to a new drug to be added to the mix.  This one is called Remicade and it will be, if all goes well, a four hour stay at Hasbro Children's Hospital--administered through an IV.  I won't bother getting into the scary medical side effects, but this is one that has been further down on the list as the "go to if we have to" drug.  Well, we have to.  His cataract surgery should've been done by December, we're watching his vision go down at his appointments and he still has active inflammation.  Dr. says infusions have to start ASAP and we're ready!  As scary as it is, we're eager to find the right recipe to get our little man into the remission that he so badly needs.  He'll be going, on average, once a month (the first month is the "loading month"--infusions every two weeks) and we should know if it's helping/working by month three.  Prayers would be SO appreciated...#1, he will have no major side effects from the infusion and that his body can tolerate the strength of this new drug.  #2, that it WORKS!  :)

Welcome!

You-vee what??  I remember thinking as our local eye doctor told me that we'd need to treat Jameson with "some eye drops temporarily".  Fast forward a bit and words like uveitis, glaucoma, idiopathic, psoriatic, methotrexate, durazol, cellcept, etc, are all words that I never would have imagined infiltrating our life the way they have in the past two years.  I had no idea that such active relationships with eye specialists and rhuematologists were looming in the horizon.

It sometimes feels like this has been a life-long journey, although we know it is just the beginning.  As much as we don't like to see any of our children struggle or suffer, we are so thankful for Jameson, how God made him and who he is becoming.  His disease has been life-changing for us as a couple and also for our family.  He has endured more things medically in his short 6 years than I have in almost 31.  And as I write this, I think of all of the families that we know personally who endure much heavier medical hardships and my heart aches for them all.  Health is a mere gift--not an entitlement, as I once so naively assumed.

Light shines into darkness and miracles grow out of difficulties.  Our family has lived and seen this first hand in the past two years in areas other than Jameson's disease.  Our journey for sight continues, but it's not just practically for Jameson's sight.  It's also to seek, watch and cling to God's hand on our day to day lives--to be encouraged and comforted by it, and ultimately praise Him for the abundant blessings that He pours out onto us daily.

We hope this site keeps everyone updated and we'll try to be diligent in updating it after his major appointments.  Sometimes it feels as if we're drowning in all of the information so it's hard to keep everyone continually updated the way we'd like to.  We know so many of you want to know, want to pray, want to help---so we hope that this site will provide everyone with the information that they are looking for.