An overdue update

Hi Everyone,


I can't believe it's been one whole month since the surgery and I haven't done a formal update on this site.  I'm a really bad blogger and it's an accurate indication of how much we've been juggling!  We know most of you are well aware of how Jameson is doing, but I just want to officially fill you in on where we're at in this process.


His surgery went as smooth as possible.  He recovered well and his Dr. was shocked at how rapid his vision responded once the cataract was removed. His vision went from 20/300 to 20/25 in less than 24 hours.  Amazing! There were no complications but he did put a microscopic stitch in his eye to further reinforce the closure of the incision since Jameson's so young and not necessarily gentle all of the time with his eye.  There's potential that this stitch might aggravate him, which would then require another quick surgery to remove it, but so far, no complaints and we're hoping it stays that way!


He's still in the recovery phase... a lot of medications to control all of the inflammation that the surgery caused.  Eye surgery sparks inflammation in ANYONE who needs it, but in a uveitis patient (one who battles inflammation on a regular basis), recovering from surgery is harder, longer and requires more meds to be sure the inflammation truly gets under control. Any lingering inflammation increases the chances that his eye will reject the artificial lens that was implanted. But we're not going to think that way!  So far so good, and he'll have another check up within the next two weeks to see how he's recovering now that we're almost one month out of surgery.


We did want to clarify where we go from here.  The surgery was to remove the cataract, a side-effect from all of the steroid eye drops used to control his uveitis.  The surgery, of course, did not wipe away his disease and he will continue on with infusions every four weeks to control the uveitis for quite some time (at least a year).  Thankfully, he continues to tolerate these infusions ideally: they're keeping his uveitis in remission and his organs are tolerating the drug just fine. Another answered prayer!


Thank you all again for everything that has been poured upon us during this very busy time: prayers, meals, child-care..the list goes on and on.  We have a wonderful support network around us and we are so grateful for how God provides during our times of need.

An Early Surgery!

Jameson will finally be going in for his eye surgery this Friday, the 11th at 5:30am @ Mass Eye and Ear in Boston.  His surgery got pushed up a bit earlier--something we weren't expecting or really prepared for. His doctor had always said three months of remission before surgery, but he's doing it at about a little over two months due to some scheduling conflicts.


There's a 20% chance that the artificial lens implant that will be placed in his eye will be rejected.  It's the chronic inflammation (uveitis) that makes up most of the 20% rejection rate--especially in children. We're praying that he joins the other 80% success stories!  Rejection would come over time, so we won't know for a while if it's successful. Thankfully, his infusions are doing the trick for now without many down sides, so our wish is obviously that they continue to do so.  If they continue to truly work, Jameson will stay inflammation free and therefore really increase the chances that he is part of the 80%.


A quick thanks to so many of you who have shown us support in all sorts of different ways.  What a journey this has been--and we know it's not over. We're thankful for small steps of progress, along with the giant leaps of success--while we continually learn to be comfortable with everything in between.

One day at a time!

Well, we only had to wait two hours this time...I guess that's better?


Overall, it was a decent appointment.  Jameson's eye is in remission!  This was the best case scenario that we had prayed for, so praise God!  We finally got to talk a little more about the surgery, which will be set for the very end of May or early June.  So many of you have been praying with us for this needed remission and we really appreciate it.  For those of you who might potentially get super excited (like we used to) and link this current remission with a guaranteed surgery date, we must invite you to hop on to the uveitis roller coaster and join the ride.  Three months of remission is needed for surgery.  We've made it to two months and three weeks before--all ending with a flare up that last week and erasing the plan for surgery.  So, baby steps!  We say one day, one week, one month at a time.  We'll celebrate after the surgery is completed.  :)


He did have a significant decrease in vision (the most we've ever seen), so it was a sobering reminder that the cataract is in there and showing it's presence.  It needs to come out!


We are thankful for a good report, thankful for remission.  But even more thankful that we don't have to expend energy worrying about future surgery plans and if this remission will sustain until June.  God is writing the pages of Jameson's life, ideal or not so ideal, and we're beyond blessed to live this with him!


"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself.  Sufficient for the day is its own trouble." (Matthew 6:34)

Eye check-up!

We are two infusions down and will be heading into Boston tomorrow for an eye check.  We'll finally find out if Remicade is doing the job at putting James' eye into remission.  Since having the infusions, the arthritis in his finger has gone down and his rheumatologist said that it does not look as active and inflammed as it once did.  We can see the difference too...it's absolutely not as swollen and tight looking! Praying that his eye benefits in the same way.


His second infusion went just as well as his first.  All went smooth; IV went in great and he had no reactions--other than the Benedryl getting the best of him--leaving Elliott to have the Wii all to himself (hard day for Ell!).  Overall, he is tolerating his Remicade well---no side effects so far (that we can see).


Pray with us that the infusions are working to get him into remission so that he can have surgery.  And a wee bit smaller request: to not have to wait another 3.5 hours in the waiting room to see the doctor.  ;)


Will update more tomorrow!

Infusion #1

The first infusion went great!  It could not have gone any better, in fact.  The nurses were so pleasant, so informative, sweet to Jameson, overly accommodating to all of our needs and made us feel so comfortable with the whole process.

He has had no allergic reactions to the Remicade, so that's great.  In regards to the toxicity of the drug, it will take some time for the full amount to get into his system and affect his liver, if it is going to.  Time will tell regarding whether or not his system will tolerate it AND if it's helping his eye inflammation.

He has an eye appointment this Tuesday.  It would be great for all of the inflammation to be gone (then we can begin the three month countdown of steady remission required for surgery), although it is too early for Remicade to show its full potential.  We'll take what we can get!

Here he is hooked up to his IV and also enjoying a good dose of unlimited Wii time.  We had brought some school stuff to work on but in the end, I didn't have the heart to pull it out.  He's such a hard worker and a trooper for all that he goes through.  Friday was a "pamper Jameson" day!  :)

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.