My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Wednesday, September 28, 2011

Decisions...Decisions....And More Decisions

I don't know if any one of us parents were actually prepared to make so many decisions for our children. We are all faced with making tough decisions that affect our children, not only immediately but years to come, too.  Raising two young children both living with chronic illness puts Bobby and I in a position we are constantly making HUGE decisions for our children.  We take our challenges to God and I most always follow my heart, but sometimes I am lost as to what to try  next! Why can't I just take all this crap away from my precious kids and live life??

Today was one of those days where I just wanted to cry! Hannah describes her day as "her worse day ever." It wasn't her worse, but not a easy day for her when she woke up feeling horrible and it only got worse. It wasn't  fun holding down a screaming, crying, kicking 7 year old with the help of 4 medical staff as we try and try and try to get a IV line started to pump these NASTY drugs in her body which are NOT helping controlling her disease.  It tears at your heart when your child is screaming for help and begging "MOMMY, please help me, get me out of here and don't let them hurt me".  I tried to hold back my tears as our favorite nurses do everything they can to get a IV started! Finally after 3 attempts-- We got it!  Hannah was MAD at everyone, including her own Mom! She was upset, and simply not wanting to be at Shands today. She  took awhile to calm down and accept she was hooked up to a pole, next to her brother who was also hooked up to a IV and we could NOT leave until all meds were finished! Thank goodness a young college volunteer was brave enough to sit with Hannah and watch a movie together!

No Chemo shortage for Jake!
Dr. M made her rounds to the Sloan Siblings. Jake was disappointed- he was hoping that his mouth sores and national shortage of Methotrexate would maybe give him a break and he can stop it for a bit! He woke up today and said, "yes, I have 4 mouth sores and the doctor can see for themselves that I can't take Methotrexate anymore". I didn't dare tell him that there wasn't a chance he'd be taken off the chemo drug that causes so many issues but possibly helps the disease???  Six infusions of the new and only approved drug (Actemra) for Systemic JRA and we are not seeing the results expected. In two weeks- we'll be increasing the dosage and hope to see better results! Joint injections were discussed again today.  Shands new Pediatric Rheumatologist does the joint injections at clinic but with no sedation.  How do I convince Jake that injecting wrists is a cool thing and this will work! I got so lost in the conversation today, I may heard injecting ankles, too? I knew his ankles were one of the hot spots, but she said they are becoming just like his wrists!! LOVELY---  flexion is limited! (My boy needs to be able to pull that trigger on his shot gun and run home with his turkey on his back! LOL)  He has figured it out.......NOTHING has worked so far! Jake has almost stopped talking about his daily pain and the hopes of a new drug working! I am actually proud of him- he has accepted a lot for such a young man! Good news- Dr. M believes she found a oral facial surgeon in Orlando area who can inject Jake's jaws.  We have been searching and searching for someone in Fl for atleast a year! Jaws are a big concern and Dr. wants to do a MRI of jaws and inject the jaws. I say that is good news...... not really but what is good about all of this?? Thank goodness we didn't discuss GI issues today. I don't think I am up to scoping Jake just yet! It has been mentioned, but he has had fewer episodes of throwing up and diarrhea  in the past month!

Hannah's biggest complaint is her neck.  What do you do for a neck? Yes- therapy would be lovely non-pharmaceutical start but insurance only approves 60 days of therapy.  Didn't you know that PT and OT can provide therapy and 60 days magic happens for our JRA kids! NOT!!!! So frustrating--- and  Shands has requested for additional visits, DENIED!!  Md is scheduling Hannah for a MRI of her neck with sedation.  During this sedation period- we're going to coordinate joint injections in Hannah's wrists. She has already warned me, "nobody is touching my wrists again with a needle".  Hannah needs some relief in her fingers and wrists, so we made the decision to try another approach directly into the troubled wrist joints. So we'll be taking a closer look at her neck, injecting her wrists and increasing Actemra. 

The day has come.....we are making the decision of  inserting a foreign titanium object into my kids body which may cause infections and at risk for much more while giving them a break of needle pokes and re-pokes at least every 14 days!  Adults that have had ports quickly say, "Yes, do it".  But for our children it is much more complicated.  This journey does not have an expiration date, we won't hear the bell ring after 6-12 months of treatment. There won't be a celebration party , ports removed and a thing of the past!   If we choose to have a port surgically implanted under their skin directly into their central veins, it will be for the long haul. Which also means Jake & Hannah will outgrow their port and need it removed and another one replaced so it won't get displaced and cut off circulation in affected tissue.  It can be dangerous due to high risk of infections and even blood clots can be common problem.  It breaks my heart to make the decision for Jake & Hannah: No contact sports, no rough playing, no blows whatsoever to the chest area! I am once again taking away and robbing my kids from a childhood they so deserve, too!  Then the nurse quickly reminded me, no 4-wheeling for Jake.  I said, "what, he isn't going to stay off his 4-wheeler". Purchasing a chest protector is a option for Jake to wear. Yes- won't he be thrilled to hear mom remind him, "put your knee splints on, wrist splints and your chest protector".  I can almost feel in my heart its the right thing to do for Hannah, but then how do I justify for Jake?  I was told if they get any fevers then they must be taken to hospital and blood cultures drawn as the basic protocol.  I laughed......Jake gets fevers several evenings a week as it is right now!  Where's my magic wand? I do take all my worries and concerns and needs to God, but it still is not a easy decision!!

On a positive note, I followed my heart and am thrilled to have Jake & Hannah attend Sloan Siblings Academy.  (Also known as, Hospital Homebound program.) Kids are thrilled to be home schooled and love it!! Homeschooling isn't for everyone , but it seems to be exactly what we needed this year! I'll blog soon and share my zillion reasons why I love homeschooling my children.

Our new stomping grounds.....
A day at the Sloan Siblings Academy.
And......our most exciting news!!!! We have decided to fulfill our family's dream.  We will be moving to Sparta, TN and raising our children in the country! If you know me well, or my husband and children, we all love the outdoors, animals and TN.  Our dream is going to come true...... Next month, we'll spend some time getting to know our new 33 acres and getting antiquated to Sparta before we move. Had hoped to meet our future  Rheumatologist  and be able to get infusions up there over the Thanksgiving break. Not sure if that can happen- insurance dictates so much!! ugh .... Every 14 days for infusions fly by quickly- we may have to settle for Enbrel shots while we are in TN. But the thought of adding another imuno-suppressant on top of another..... Yikes!  We won't be moving anytime real soon, but we made the decision to be closer to Grandparents and live in the country!  I look forward to sharing TN  story's  with you oneday....... I hope the good, clean country air will wash Mr. Aurthur out of my children's bodies and all these drugs are not necessary to survive! We are really excited to make a change and focus on some new interests. Bobby is looking forward to spending time with his family and being a retiree!

Hannah was wiped out, a long day!
Our family & friends who have been there for us, THANK YOU! This disease is invisible and very difficult to explain to others so you can even begin to understand a piece of our everyday life.  But those of you who have loved my children and prayed for our family, thank you & please don't stop the prayers! The Sloan Siblings journey isn't over, there has not been a bell heard and they will most likely never hear that bell ring! So we will always count on your support and prayers to get us through each day! And today was a long day!

Jake is just a grinning....focusing on TN!

1 comment:

  1. Omgosh. I don't even know where to begin. I totally understand what you must be feeling about the ports. It's a very, very hard decision to make. I had been thinking about it since last October, knowing that it would come up eventually, but I wasn't going to be the one to bring it up. I know how heartbreaking it is to know that you even have to think about it. I'm so sorry that you have that to add to your pile of other worries. I'm sad to hear that Jake is "getting used to the pain". That's just so wrong. There should be a cure by now, or at least better treatments. And Hannah... My heart breaks for your little people. Last month Emily was kicking, waving wildly and screaming, too. I know the feeling of anxiety and dread knowing what is to come. At least, I know your side of it. I can only imagine how our poor kids must feel. Hopefully the increased doses of Actemra will help.

    I can't wait to hear about you home schooling adventures! I wish I could home school in many ways. And I'm totally excited for you on you TN property!!! It's our dream, too. We are totally in love with Townsend/ Blount County. I hope that you do have the opportunity to meet the rheumy up there. How exciting!!! Of course, we'll all miss you terribly here. :( You have helped people more than you know.