Today was just another day......a day in the life of "The Sloan Siblings Living with JRA." This morning Jake and I start our day off with reading books in the school library and taking AR tests on the computer. Jake wanted to meet his class goal so he can participate the AR Pizza Party! Yes- Jake met his goal before the end of the month! Now....off to Shands Hospital we go! It was a good 3 hour road trip this morning. A special friend had surprised Jake with a DS game and we even stopped at Jake's favorite store in Ocola- Gander Mountain. As we get close to Gainesville- we received a text message that Gavin(one of Jake's JRA friends) and his mom were also at Shands today. Jake was excited- a entire day just with mom, a little shopping at Gander Mountain and was able to play his DS for 3 hours in the car!
The fun begins to slow down as we enter the infusion room. Not always pleasant to see a room full of children all hooked up to IV poles. Jake is always brave- despite what the outcome may be. The nurses greet us both and talk among each other as to who is going to start Jake's IV today. This is not a easy task for Jake or the nurses. Each one of the nurses remember Jake's veins and situations that happen every month. So....we got the video game picked out and it's time to start the IV. As the nurses search all over Jake's left and right arms, hands and then ummmmm.....which should we try! Jake gets a bit scared- but never sheds a tear and is so brave as they dig deeper and deeper and pull and reinsert the needle over and over trying to get a good vein to corporate! Finally- we cheer as the nurse successfully gets Iv started and Jake gets back into the video game!
It wasn't very long and Jake's vein had a "blow out". He tried to tell me and a nurse that it hurt, hurt really bad! Within a few minutes we understood why it hurt as his arm was red and HUGE around the entire IV site! So another nurse was brave to attempt a different vein. Jake did not want any part of this- he was ready to go home! The nurse assured him we are going to start this IV even if we have to put it in his foot! After holding Jake down- and a little bit of luck another IV was started!
Jake tried to focus on his video game as we wait for his nurse and rheumatologist to make rounds. You always wonder what is going to be the game plan today? When have we determined treatment isn't successful and ready to move on to another drug! We know all too well that there is not a easy, definite answer as to how to treat JRA. Jake's doctor talks to him and looks at all his joints and decides we need to add more Enbrel. Jake's eyes light up, the video game on pause- and says to his doctor, " another shot- not on church day". Not only are we adding more Enbrel but also increasing his Methotrexate. Jake shakes his head and says, "no". Jake is old enough to understand that he feels so badly on weekends and days after his methotrexate shots that he is not happy about hearing that he is increasing his dosage!
So the worse part of the day was over.... now the ride back to Lakeland. It wasn't very many miles down the interstate and Jake tells me he doesn't feel well. yup....He was telling the truth, he did not feel well! As it was pouring down rain, Jake is throwing up all over in the back seat of my car. Anxiously waiting for a rest stop or exit to get off the interstate. When I am able to open his car door- he is shaking , crying and apologizing that I am standing in the rain and he made a mess in my car and all over himself. We cleaned up the best we could and headed back on I-75. Now Jake had no clean clothes , so we couldn't stop for a bathroom break. We waited till we came to the Green Swamp....pulled off a dirt rode and did the best we can!
As Jake is getting ready for bed, he shares with me his thoughts. Jake says, "Mom, I'm ready to go to Heaven". I said "why would you say that, Jake"? He says" I'm ready to go to Heaven and have God take away all my pain and be done with my arthritis". I was speechless as tears rolled down my face. Jake says" Mommy, I'll only leave you for a day". "Just a day in Heaven to be free of all my pain, then I'll come back to you". It's not fair that my eight year old son is ready to go to Heaven because he wants the life of living with JRA to be over and live pain free!
Yes -today was just another day living and raising two children with JRA! Please continue to pray for Jake and Hannah and the other 300,000 children who all suffer from JRA. I'm not ready to have my eight year old son go to Heaven to just be pain free! He needs a break and an opportunity to just be a kid and enjoy life!
God bless Jake and his beautiful, strong mom! (and little Hannah too) I sit here with tears rolling down my face at the innocence of Jake wanting to go to Heaven for one day to live pain-free. Love and hugs to all of you! dawn (sadie's mom)
ReplyDeleteJeez, Heidi. :( Poor Jake!!! What a horrid day for you both. Our kids just should not have to hurt that much. I hope that he feels better tomorrow, and you have a better day. How heartbreaking the whole day must have been, but I think I'd have really lost it at the "ready to go to heaven" part.
ReplyDeleteOh, Heidi.. the tears are rolling down my face...I pray that God gives you and your family so much strengh. You are in our prayers!
ReplyDeleteDear Jake and Hannah,
ReplyDeleteHi there kiddos, I am Tracey, I have RA and my 5 yr old daughter ,Martina, has JRA, yes it stinks. But we fight it everyday, we do not let it win. We get our injections of Humira and Metho the same night so we can hold hands and help each other with the pain. We have to be strong for each other, and yes Martina wishes at times she could just go to heaven and be cured or she asks why cant she just be a regular girl... It breaks my heart for her to say that because I would miss her soo much and I wouldnt have any one to hold my hand when I get my shots. Jake, please be strong, keep your chin up, help will be on its way I know it. I have vowed for that in my lifetime I am going to make the biggest impact on the world as I humanally can. I talk to everyone I possibly can when I am out in public about JRA, and how most people do not even know KIDS GET ARTHRITIS TOO!! I have so many JRA shirts I wear out so people usually will ask me about it. I am my area's Chairman of our Arthritis Walk going on my 5th year, I serve on many committies for my Pa chapter, I do almost anything I can to advocate for all you beautiful strong kids. You all are in my prayers every day and night, chin up and fight the pain...you can do it.
Parents, please help me, I want to start a lobby group and go to DC and lobby for more funding for Arthritis. I cant do it alone, a one woman crusade isnt going to get much attention, we need numbers, make an impact, be known, KIDS GET ARTHRITIS TOO, we need more funding, research monies, pediatric rheummys, the arthritis bill needs passed, we need media coverage so that the common sector understands JRA, the thoughts that these kiddos have in their mind of wanting to go to heaven, please, lets do something, be heard, be seen, be strong, be there for our kids sake and find a cure, ADVOCATE!!!!! Please contact me if you are willing to help get something going... my email is Pageant58@aol.com.. I am a fighter, and need other fighters to help me. No more kids wishing to go to heaven because of their pain or the pain they feel they are causing us parents. I need your help.
:( You have such a brave strong boy. I think we all have brave strong children. Please give him a bug hug from Jackson and myself, and momma, make sure he hugs you back really tight for me!!
ReplyDeleteI totally meant BIG hug not BUG, lol. Unless he likes hugs from bugs. :P
ReplyDeleteHeidi, please know that I pray for you and your angels to have happy, healthy and pain free days. Your strength and beautiful mothering, so evident in this blog, are an inspiration to me. Thank you for sharing your family's story. It helps others remember to be grateful for the good, strong in the bad and to LOVE LOVE LOVE their children with every shred of their being.
ReplyDeleteNicole Rogers Halstead