I will start with Connor's up-date. Today Connor had his IVIG infusion again at the Center of Cancer and Blood Disorders in Colorado Springs and it went very well. The Nurses working there are all wonderful, the Doctor we met was kind and compassionate and everyone there was talking very highly about our Dr. Jennifer Soep. It feels so good to know that Connor's care is in such wonderful hands. It really feels that everything was on the right track ever since we met Dr. Pachman in Chicago. She introduced us to Dr. Megan Curran which we also love and who in return brought us to Dr. Soep. What a great circle it has been. Today, Connor's infusion took just 4 hours, what a change from the 10 hours it originally took! Both Connor and Alexander did great during the Infusion and they both demanded to sit in one recliner together even thought there were about 10 of them and none was used. I am sure it has to do with school still being in but the whole time we were there there might have been two other children for a short time. I think we were the only ones that were there for 4 hours. Last time we came there we had the joy of having our Miss Jaja with us and it was nice remembering her there.
We finished our trip with a stop at COSTCO to stock up on some meats but also for my boys to eat some samples. There is no place like COSTCO for my boys to go and try out food they would never attempted at home - haha
At home I also shocked the boys by giving them the food fight they have been wishing for. They loved it but told me later that they thought it all was very sticky on the face ;)
Now, here is the part that is so hard to explain. While we as a family are so happy with the progress Connor is making there is the heartbreaking struggle and fight of some of his fellow JDM fighters out there. Just today I heard of three children that are hospitalized, one of them in the ICU, and one who had a Stroke at 12 YEARS OLD!
My battle is the conflict of being happy for us but also the pain and fear that closes my heart by thinking of the children and families that are trying to hold on. I said it last year and I am still at the same place that I wish I had an answer to the 'WHY'. No matter what I am told there never is an answer why some children and not others. Why Children, period! It will never make sense to me and that is my problem since I do not find any comfort in any explanation I was ever given.
So there are the times and days when I want to turn my back on JDM and it is easy at times because Connor is doing so well. The only reminder I have is the twice daily medicines he has to take and that has become routine. I should not fool myself because even thought Connor looks good on the outside he is still on weekly Chemo, he still takes daily Steroids and Cyclosporin and has his monthly infusion. We are still a ways off for him to even be considered in Remission, not as long as it takes so many drugs to keep him going. There will always be the shadow over us as long as there is no Cure and hearing about the struggles of other children will always bring the reminder home.
So please be happy for Connor and the progress he makes but think of the fight so many of our children are fighting.
Hugs,
R A C A
Love the pic of the twins up there on the right. Your words gave me goosebumps! It is so true. It is hard to hear when the rest of our JDM family is in the thick of hard times. It makes me very sad for them but thankful at the same time. I very confusing set of emotions that come at us Mom's. I am glad IVIG went well. We are getting down to about that time frame as well. About 4.5 to 5 hours. I can't even remember when it was ten hours. That was 2 years ago. Have a great day! Cure JM
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