May 31st The Hope Music Festival
As you all know it has been expected that Ayden would be spending most of his Summer at Wolfson Children's Hospital Ayden will be receiving back traction and spinal fusion with rod placement this summer. We just received confirmation on the dates of proceedures. June 1 we report for pre-op and Endocrine..June 2 follow up with Neuro..June 3..Oncology..June 4th Wolfsons..June 5th surgery to attatch Halo ..Traction for 4-5 weeks , July 7th surgery to remove Halo and proceed with Spinal surgery . Orthopedic surgeon and Neuro surgeon will work side by side during this surgery as because of Aydens Tumor in his spine they must pay special attention to his neurological functions during surgery . Approx two weeks inpatient recovery including Therapy. Doctors expects Ayden's height to increase 4-5inches. He is very excited about that "maybe I can shoot some good hoops now " Although this is a positive step for Ayden, we are still feeling overwhelming emotions medically and emotionally .
We again Thank everyone for all of your support , as your prayers and thoughts are what help us stay focused !
Much Love, The Jolicoeur Family
I'm happy to report after a stressful two day wait , Aydens scans are normal and Thyroid levels back to normal . Ayden will still remain on the synthroid and follow up in 3 months for another MRI . We are still waiting for the surgery scheduler to contact us to schedule traction.
Thank you all for your prayers , well wishes & concern ! We are always amazed and blessed by all of Aydens supporters !
April 14thWe are here in Jacksonville for Aydens MRI Tomorrow! Thank you all for your continued support !
On our way home. Ayden battled with some anxiety yesterday during the MRI. It was longer than expected as the doctors needed the whole spine scanned. Ayden was getting quite anxious, but as always he pulled thru it! Today we had labs to check his Thyroid levels. Now we wait for MRI results. The hardest part!
Thank you Homewood Suites/Hilton for always making us feel at home and giving Ayden that extra special attention !! He loves his Hilton Family !
Ultrasound and labs came back on Aydens Thyroid confirming Hashimoto's disease ! Who the heck is Hashimoto I ask !
So it's an auto immune disease where his immune system attacks his thyroid .
Right now he's been on meds and the new labs show that the medicine is working . Aydens thyroid is functioning at normal levels as of now .
So follow appt in June to check levels again. The thyroid has to be functioning normally in order to proceed with our summer traction plans !!
Ayden will be on synthroid to control his thyroid for life , but I will take compared to our past journey !
Looking forward to Spring Break he says " late nights, video games and no school "
We will be traveling to Jacksonville early Wednesday morning for another MRI. Ayden has been continuing his steroids orally , which has been a crazy ride ... Ayden has eaten everything but the cats oh and the dog of course!
We will not have any results till Thursdays consultation with the Onc Team .
We appreciate all of your continued support through cards, messages, calls your support means so much to us !
Thank you !
AMAZING NEWS: The inflammation in Aydens spine has responded to the steroids ! The swelling has gone done tremendously . The area that was of concern is now believed not to be new tumor, but a result from proton radiation. Ayden will remain on steroids for an extended period if time. A follow up has been scheduled for July. Traction and correction of spine scoliosis/kyphosis will be discussed further at the Tumor board meeting as well.
We thank each and everyone of you that continue on this journey with us ! Your support means the world to us !!
South Florida here we come ! We are on our way home ! Excited, overwhelmed, blessed, breathless.. No words can express how we feel right now . Ayden is our miracle child in every way.
Never Ever Give Up!
Quote by an amazing little angel Jessie Rees
UPDATE We are officially discharged !!!!
The steroids are definitely working to reduce the inflammation on Aydens spine, although they are still concerned with some thickening in the upper Cervical. Ayden will remain in steroids for two weeks in which he will the follow up with another MRI and team evaluation.
We are so blessed with the out poor of caring phone calls , cards messages and prayers ! Thank you all so much !
The Jolicoeur Family
Ayden was admitted into Wolfsons Childrens Hospital early last evening due to an abnormal MRI .
Ayden was ordered an immediate MRI when he started having loss of balance, skeletal issues and weakness in his legs.
Doctors have ordered Ayden to receive high doses of Steroids and a brain MRI. It is unclear weather the MRI abnormality is new growth or extreme swelling as a result of the Radiation treatments.
At this time we are waiting for brain scan results and confirmation of the abnormal Scans. Our family thanks everyone for their calls, messages, thoughts and prayers.
Ayden had 2 days off to enjoy some much needed fun! Real food lol , good times , good sleep !
We return to the hospital tomorrow for more meds, tests and another MRI First thing Tuesday.
Ayden has definitely shown improvement from the steroids! Which is a damn good sign !
Thank you all for your support, calls , cards and most of all good friendship !
Love you all , The Jolicoeur Family!
Please keep Ayden in your prayers as the doctors have ordered an MRI first thing tomorrow morning . Aydens mobility and weakness in his right leg have been getting worse since his last scan. Ayden has also been experiencing pain in his upper portions of his back, as well as his neck . This could all simply be side effects from radiation or just deterioration of his skeletal dueto his scoliosis and kyphosis. The MRI has been ordered to make sure Aydens tumor is at Bay and is not playing a part in any of this .
We will meet with doctors late tomorrow afternoon for our report. As long as Aydens scans are clear doctors will plan Aydens corrective measures and surgery for his back consisting of 4-6 weeks in patient traction followed by surgery for Rod placement . Physical Therapy will follow.
Thank you all for your prayers and support !!
The Jolicoeur Family
Well it was this time 8 years ago I went into labor with my beautiful amazing miracle baby "Ayden"
6 yrs of waiting and 15 hours of labor all worth it to meet my little baby boy ! Ayden still as strong as he was in my belly , proves his strength and courage on this 8 th year May 17, 2014 !
We love you Ayden
Update : we are on our way to Jacksonville for Aydens 2nd MRI since his radiation treatments . Followed by a meeting with Orthopedic Surgeon including an X-Ray to determine the severity of Ayden's scoliosis/kyphosis .
Friday we meet with Oncology , Neurology and Radiology to discuss MRI results. Praying results are what we are hoping for we will move forward and schedule surgery to remove his port. Orthopedic Surgeon will also determine if we can move forward with surgery to correct Aydens back.
Ayden is growing in height and weight showing average and above average in both areas.
Please Keep Ayden in your prayers , stay strong and Never Ever Give Up! NEGU !
Brief update : Ayden did amazing with his hour and 1/2 un sedated MRI !!! I was able to stay with him the whole time ! We also saw his orthopedic surgeon, X-rays show his scoliosis has worsened future plans to be discussed after meeting with oncology team and will depend on his MRI results .
Thank you all for your calls and messages ! Especially your prayers !
QUICK UPDATE: on our way home now! Aydens MRI scans show a stable tumor with no new growth and no active cells ! Thank you all for your messages!