Saturday, December 4, 2010
An overwhelmed Mom..... treatment changes times 2
Fall is for fun festivities not fallbacks...... Trying to make things easier on me, decided to have Jake and Hannah's Rheumatologist appointments at Shands on the same day. Not sure if that was easier on me or not.....my head is just now stopping to spin!
Many of us living each day with a chronically ill child have days or weeks that are overwhelming. This was my week to be on overload! While Jake is hooked up to the Iv pole- getting his solumedrol and zofran- I try to explain Jake & Hannah's past 30 days to Dr. Elder and her nurses. 30 days- that shouldn't be difficult. Meanwhile, Jake and Hannah had special surprise visitors. Their family pals from Camp Boggy Creek came to visit Jake and Hannah in the infusion room. Positive distractions are always nice, but today Jake was in no mood for visitors. He was mad to be hooked up to IV's and not down on the floor playing board games with his pal, Roj.
So after Dr. Elder gathers info, reviews current labs and examines Jake from head to toe, she shares that his aggressive Enbrel/Methotrexate/Solumedrol/clinoril treatment was not affective. We have reached the point to move on and try another biologic agent- Remicade. Thoughts are racing through my head....knowing long term health effects are unknown, the increased risk of cancers, and the toll it will take on Jake's immune system. Besides a miracle and healing from God, we don't have any other better options to help Jake to feel better and try to get this disease under control. He has active joint pain/arthritis literally in every joint in his body (even between his ribs, jaws and his toes). On the positive note, Jake was pleased to know that he will have 3 less shots a week (Enbrel) once he starts Remicade infusions.
Dr. Elder moves onto kid #2- Hannah. She is impressed with a photo of a recent rash, notices swelling on several joints, swollen lymph nodes, sensitive jaw and tummy. She is mostly concerned about Hannah's eyes and the status of her internal organs. Hannah has always had a history of increased joint pain leads to severe abdominal pain. Hannah has been awakening at night, screaming crying about tummy pain. Dr. Elder discusses the need to consider changing Hannah's medications too. Choices include Anakinra (kineret) or Remicade. Both of these are more effective treating systemic JRA. So we decided to wait until next eye appointment ( Hannah currently being treated with Alrex steroid drops and is seen every 2 weeks by ophthalmologist) and have abdominal ultrasound. Meanwhile, we increased Hannah's Enbrel to 75mg a week (3 shots a week) and discontinue Mobic and add Celebrex 100-200 mg daily. Discussed doing a MRI of her jaw, but will wait until she shows signs of difficulty eating or weight loss.
As Jake finishes his infusions, I sit next to him and think about all the things that need to happen within the next few days. I very quickly became overwhelmed! Jake is moving onto Remicade, I start Rituxan myself tomorrow and Hannah increases Enbrel and starts Celebrex as we wait for more answers on her eyes and abdominal issues. Not sure if it is wise to have Jake and Hannah appointments together on the same day. Another day in the swamp...... a treat to see Grace and Raj, our Boggy Creek friends!