My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Wednesday, April 18, 2012

The Latest & Greatest with Sloan Siblings...

So>>> I jumped with my excitement about "dumping methotrexate" and within minutes of posting on Facebook....I received many private messages. Arthritis friends from all over wanted to know if kids were in remission, why did we "dump Methotrexate"?  Neither Jake and Hannah are anything close to remission. I simply needed them to have a break of feeling like CRAP for 2-3 days after EVERY Methotrexate shot EVERY week.  It was already on my notes to ask doctor if we could decrease dosages...but as he explained there isn't much more we can do for mouth/nasal sores but swish water in  mouths and add folic acid daily. Then he noticed Jake is thinning and losing hair. I just said, " I'm ready to  "dump Methotrexate" . This isn't the first time I've dumped MTX. We took Hannah off Methotrexate for about 2 years because she was vomiting week after  week and so sick! We never saw a difference either way- on methotrexate or not.  At least now I don't have to expect headaches, tired, nauseous, vomiting, no appetite and feeling like total crap from a medication! So for those of you are in awhhhh that I did it...... I simply needed a break for Jake and Hannah and entire family. I'm sure kids will be back on it one day, but for now we are celebrating and happy dancing that "methotrexate is dumped" for the time being. I apologize if I got some of you concerned or worried that I'd discontinue a medication without doctor's recommendation.....but they'll be ok and ENJOY the break!

Jake loving his "Wish Spa" from Make A Wish.
Jake's jaw injections were delayed due to surgeon had to cancel due to a personal emergency.  It is now scheduled in 2 weeks- April 30. Jake will also be having 5 teeth extracted at the same time while under anesthesia. We are hoping it will bring Jake relief and improve his jaws and increase his appetite. The surgeon has talked to Jake and I about him needing  jaw surgery as he gets a little older. It would involve them removing one of Jake's ribs and replacing it with his jaw.  The good news is arthritis doesn't seem to attack the new "rib-jaw". But that's down the road.....we are wanting to buy as much time as possible so he can continue to grow.  Surgeon has asked us to keep the aggressive treatment and hoping injections bring relief. Just don't know for how long????

We are still are struggling with Jake's weight. He has not gained any weight in 2 1/2 years but has grown in height. He is getting thinner and thinner and losing muscle mass. We have tried a few simple approaches; shakes, protein pills, extra vitamins and encouraging high calorie, fatty foods. Jake continues to have diarrhea daily and throws up here and there and his appetite is up/ down.We were thrilled Jake's upper/lower scopes were good and only indicated he is lactose intolerant through his GI work up.  Jake has had additional  liver tests after a few liver levels were abnormal. He has been referred to a pediatric endocrinologist at Shands Hospital. We are trying to put our finger on if it's just the disease itself, medications or something else ( liver related). Jake is back in Physical Therapy and aquatics 3x weekly. He was disappointed today to see he has lost 2 lbs. and Mom has gained 5 lbs.  I'm leading by is good! lol

" Happy Hannah"
Hannah...... HOPING her eyes are healthy with no cells. Today, her pediatric rheumatologist noticed her eyes??? She has a appointment in 2 weeks, but am calling in the morning to be seen ASAP.  I DO NOT like the thought of eye involvement!!  We tweaked Hannah's medications slightly today. We increased Celebrex to 100mg 2x daily, added folic acid daily to help with mouth/nasal sores, decreased Enbrel to 1x week, and increased solumedrol- steroids to 500mg.  Ohhhh...and "dumped methotrexate". Hannah got orders to start physical therapy and aquatics. Her knees and wrists/ fingers were warm/swollen today when MD looked at her. He asked if Hannah is dancing? Then, recommended Hannah only dance one class and let it be the least impact on her joint.  NOT-- Hannah has her 'Big Show" in a few weeks and would never quit at this point. I love her carries her through most everything.  She so enjoyed dance class last night, but then hopping throughout the house and crying in knee pain afterwards. Pictures show a happy girl.....but she hasn't been felling well lately. Discussed "steroid rages" with physician...... I'm thinking they need to give caregivers and siblings meds to COPE with these rages! My heart breaks for her..... Hannah has a endless heart, but boy O boy there are days I wonder if we both will survive! Hannah was hoping for the past week, we'd come home with a solution or prescription for her mouth sores that HURT badly. Disappointing..... but Mama bear helped by "dumping methotrexate". YEA!!
Nothing crazy going on, just same ole...... Jake and Hannah continue their weekly massages and LOVE them. Am supposed to be pursuing acupuncture.....haven't decided who to try locally?? Horse back riding lessons are FUN and gives kids something special to look forward to at end of each week. Just 3 more weeks until our family is participating in Tampa's Arthritis Walk.  We have not been as involved as previous years.... not having it locally has been different and more challenging for me to recruit sponsors, donors, walkers.  Time has been a issue too-- not enough hours in a day! Homeschooling continues to ROCK!  There is plenty of time to register to walk with our family or make a donation.  EVERY donation gives us HOPE for better medications for kids and HOPE for a CURE! Visit:  No matter where you live across the country- there are local Arthritis walks happening in May. Hope there are a few more walkers across the country taking the time to walk and think of these 300,000 children who deal with arthritis everyday and need a CURE! 

Sloan Siblings Receive A Gift of Hope.....

Ten months ago, I opened my mailbox to read a packet from Make-A-Wish Foundation that Jake and Hannah both have been invited to make a special wish..... It was such an emotional experience to read that both of our children are able to make a special wish just for themselves.  Some people think Make-A-Wish is just for children who are terminally ill, but it also includes children who have life threatening chronic illnesses.   Jake and Hannah are receiving a gift of Hope and they so deserve a chance to renew their courage and determination to fight JRA!   For a moment I cried and thought how do I actually have two children who qualified to receive such an amazing dream.

Last June, as I briefly explained "Make A Wish"  to Hannah and Jake and this once in a lifetime opportunity. Hannah thought of only one dream, one wish! It was to take away our dear friend, Jeri's cancer and to heal him.  If  I wasn't crying before...I sure did at this point. I explained to her that this was different...she was able to pick somewhere she always dreamed of going, or wished to have, or be, or meet someone special.  She insisted that her wish was to take away Jeri's cancer.  Hannah and Jake share the infusion room at Shands Hospital  with children who are like themselves and others who have cancer.  These children are all their friends and they understand it more than most adults understand.  So to Hannah she wanted Jeri to be healthy and not have to endure treatments like she does and other children do. Bobby and I had many conversations with Hannah to try to convince her she can be selfish, just this onetime and pick a wish just for herself.

Jake and Hannah had 5 days to think about their wish.  They had been asked to provide the wish granters (Miss Candy and  Mr. Joe)  with at least two wish requests. Jake did  not surprise us with his wishes-- he has always asked us to think about getting a therapy pool. He loved the pool at LRMC and thinks it would be the best thing for he and Hannah to have an opportunity to swim everyday, with heat, jets and current control to continue to build his endurance.  His second wish is a trip to Alaska.  Yes- if you know've heard about his plans for Alaska. Hannah on the other hand-- her wish list changes by the minute.  It could possibly be an outdoor play house, a trip to a horse ranch or a vacation at the Amish Farms. She has even talked about a shopping spree, Disney cruise, bedroom makeover and even a horse for TN. The few days passed and Jake and Hannah  shared their final wishes  with the Wish Granters last June.

The months passed, Jerri continued his treatment. We laughed as the months went by and thought Jeri isn't done with his treatment, so wishes can't be delivered.  Our biggest wish came true......Mr. Jeri Gable is cancer free.  Then in early April, we received a call that Hannah's playhouse was being delivered and Jake Wish Spa was to be shipped in Lakeland on the same day.   The pictures below say it all...... 

Our family is beyond appreciative for Jake and Hannah's gift of HOPE! It certainly has been WONDERFUL to have the opportunity for both kids and my husband and self to enjoy the hot, bubbly spa! The waterfalls are a favorite of Hannah's. Jake likes the captain's chair and I simply enjoy every second of it! It has been used at least twice daily and feels great on our bodies! Thank you donors, volunteers and staff at Make A Wish Foundation for giving Jake and Hannah a gift of HOPE.