One of those weeks I questioned myself and wondered what has happened to our lives? After almost a 3 hour pediatrician visit- I asked " do we have a choice to dump all these medications". Then today, I read a newspaper article about a little 9 year old boy who choose to just be a kid and not endure anymore chemo treatments to fight his cancer. Even though he may have only 6 months left of his life- he choose to be a kid and live life for the remaining 6 months. As I read each of his comments, tears rolled down my face, as I have heard Jake and Hannah say each one of those things to me. Hannah has got old enough she is now verbalizing that she hates going to Shands, hates going to all these doctor appointments and is starting to give me a hard time about taking her medications. She begs me to help her neck and back pain to go away - it's driving her crazy! She has finally figured out the direct correlation as to why she feels so sick, headaches, loss of appetite and tired after she gets her weekly dosage of Methotrexate ( chemo drug). I am really questioning myself-- are we making the right decisions?? We TRY so hard to let our kids be kids and do anything they want. But their little bodies can only do so much somedays and those days are hard to sit back and watch! Methotrexate day sneaks up so quickly--- by the time she's back to feeling like herself, it's almost Methotrexate day again.
We have been aware of Jake's weight and been concerned about it for quit some time. However, we celebrate at any opportunity we get---and we are pleased that he is continuing to show growth in his height. Jake has not gained any weight over the past 2 years despite getting taller. One of his doctors has referred to him as" chronically ill-appearing, thin and has muscle wasting". His chest, wrists, arms, and legs are evident of losing muscle mass. He believes the active disease is causing the muscle wasting in Jake's body. We are working hard on building muscle and getting some weight on Jake. He's our healthy eater, LOVES all fruits and veggies. He has never liked cakes, cookies, ice cream or anything sweet! Plus, we recently found out Jake is Lactose Intolerant. So will have to be careful with dairy/lactose products so he doesn't have more diarrhea and vomiting than he already has! Let's hope Jake adds some weight and mom does NOT join in eating all these extra, high calorie foods.
Our family was able to attend
Camp Boggy Creek for Spring JA Family weekend a few weeks ago. Awhhhh....it is literally the BEST place to escape. It's a Hole in Wall Camp and there is no place like it. We had an opportunity to meet many new families and connect with others from across Florida. Everything is so perfect there! One of CBC missions is to allow kids with chronic diseases to forget what they have and be a kid! We drive away with more determination to help find a cure!
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| "Riding for Therapy" at TIANVICA Riding Academy |
Today, Jake and Hannah started "riding for therapy" horseback riding lessons. It was touch and go all day if we were able to make it. Jake had a especially rough day. But by the Grace of God , zofran and a day of rest....... he was feeling LOTS better and thoroughly enjoyed his first riding lessons. It was incredible to see him smile and glow while sharing with me his first riding instruction. For those of you that know Hannah..... obviously she loved it! She's the girl who collects frogs & lizards and creates habitats and walks them on leashes. Am so ever grateful for people who have entered our lives in one way or another who truly MAKE A DIFFERENCE in Jake & Hannah's life! Thank you Roger & staff!
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| Jake's recent hospitalization due to unexplained fevers. |
Another week closer to helping Jake in getting relief in his jaws. Jake HATES his shots- but is actually looking forward to his jaw injections. Hoping & praying it brings relief for him. We're kinda in limbo as to his treatment. There has been discussion about stopping Actemra and going back on a previous Biologic and adding a second biologic and seeing what happens?? It scares me to switch drugs and go backwards just because there isn't anymore options in treating this monster of a disease. Jake is starting to get fevers again and Actemra may be loosing it's effectiveness ?? Jake had a recent hospitalization at St. Joseph's Children's Hospital due to unexplained fevers this month. Thankfully, port infection was ruled out and he didn't have any virus or infection. Assuming it's just his SoJA flaring- CRP was elevated, ect...
I go to bed tonight trusting in Him and remembering this sign at Camp Boggy Creek......
Don't Stop Believin.
Our family has so much to be thankful for, but it doesn't make it any easier to watch your kids in pain and feeling so horrible day after day! I am a bit overwhelmed with so many things weighing on my heart, and with the new year brings......MEDICAL BILLS galore!! Within a few days, Jake and Hannah are going to be presented with an amazing gift of HOPE! Simply because you may NOT understand the disease or visually see the pain and effectiveness of the disease with your limited exposure to Jake and Hannah-- certainly doesn't diminish the severity of SoJA. Thank you for those of you who have impacted my children's life and brought a smile and HOPE! And even you, Patrice..... Jake & Hannah really enjoy their massages and you are such a important person in their little lives!
We won't give up HOPE, We won't Stop Believin!
I'm sorry to hear about these new struggles with Jake and Hannah's med crises. It sure doesn't help when the kids decide to rebel. I hope that Dr. E and crew can figure out new ways to help them. <3 Love you guys!
ReplyDeleteAlways much love being sent your way to give you and Bobby strength and Jake and Hannah healing. This disease is quite the beast but we will beat it one day! Hoping constantly for that cure. Love you!
ReplyDeleteI read your blog every month, my daughter has SJIA also, and like yours it is the unrelenting kind. You are in a hell, a true hell if there ever was one on earth.
ReplyDeleteRecently we've gotten frustrated and started working with an integrative doctor. The things that we learned, opened up our eyes. I could not have been more skeptical initially but now I'm a complete convert. At this point the integrative doc is too conservative for us ! I've seen the light.
You really need to explore alternative medicine, and integrative medicine is a good conservative place to start.
In the last few months we have put down flares, and lowered disease state to the point where a biologic may not be necessary. We have seen impact within hours of trying things. Its staggering. If you are thinking it sounds to good to be true, I can understand that.
When you hit that breaking point and are losing hope. Just remember. There is hope. Consider that this could be microbial. Has your family been exposed to improperly refrigerated food for a prolonged period. Did the kids have GI issues prior to onset ?
We gave our daughter some garlic one night and saw a Herxheimer reaction. A few nights later we did it again and it happened again. Then we started seeing disease subdue before our eyes. My daughter is every bit as severe as your kids, platelets in the 700s, early cervical spine involvement, SED over 100, articular involvement everywhere, rash a year into disease.... all the worst signs. Kineret, Actemra, Enbrel, MTX,..... the list goes on.
It always seems to me that the worse off patients are the one's who are enamored with the "evidence based medicine" doctors. Evidence costs alot of money, drug companies are not looking for cures, just symptom treatment.
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