Aaron's Hyper IgM Journey

Friday, September 14, 2012

Aaron Needs Your Help!!!

Aaron is not good.  They have done endless tests on him.  They cannot detect any infections in his stool or blood.  A full body scan came back without any issues.  Today they did a full scope of his GI tract.  His GI tract looks pretty good.  They did a biopsy and the results will come back soon.  The only likely thing at this point is gut GVH.  Although the scope did not look bad, the biopsy can still come back with GVH.  At this point I just want an answer because he is shutting down.

He will not eat; he will not drink; he does not talk; he does not play.  He just wants to lay in bed without stimulation.  I rarely ask for help, but I really need it right now.  Please be creative and help us out.  I need to find ways to stimulate Aaron.  I need activities for him to do, things that are engaging.  For example, crafts with stickers or making paper airplanes.  He does not like to color with crayons and he does not like coloring books.  We do not need any big toys or anything expensive.  He does not need any more movies.  I want something that will require his brain to be active that is fun.  He does not have a lot of energy.

I know I am asking a lot, but I am not creative and I have to get Aaron out of this.  The doctors are working hard to fix his body, but no one is helping with his mind.  I feel like I am losing my son and it scares me to death.

Our mailing address in Cincinnati is:

Ronald McDonald House
Wolsey Room 78
350 Erkenbrecher Ave
Cincinnati, OH 45229

If you do not want to mail anything, but have suggestions, I would appreciate that too.  Thank you all for your love and support.  We have been through a lot and gotten through it.  We will get through this as well.


  1. Dear sweet Chandelle...I would never dream of posting my religous views, but having 4 children I just want to share my thoughts. We are devout Catholics and believe completely in God. Honey, I always wondered about "what if" ever happened to one of our children. I stongly believe that our children are not truly ours. They are not our property. I believe that they are the 4 that God chose for us to look after and raise the best way we knew how until He called them home. I always comforted myself with this belief that because of my belief, it would get me through anything that was sent our way. The only and best thing we can do for our children is take care of them the way we believe God would want us to watch over them. There is never any second guessing that "I should gave done things differently and perhaps the outcome would be different". That simply isn't true. You and Mike are doing EXACTLY what God has asked of you. You are watching over your little boy to the best of your ability. And, I might add...you are BOTH amazing caregivers. You are teaching Serena and everyone that knows and loves you how to handle lifes curveballs with strength and grace, simply by your actions. We should all be thanking you...it is because of your examples that we all wish to emulate you in our own lives. I know it is hard to imagine that you are giving anything to anyone but Aaron, but you are so wrong. Your actions have shown everyone how to be humble, grateful, optimistic, and strong. You and your beatiful family are so loved by so many. I will continue to ask God to give you & Mike the strength you need to get through the days ahead. Kisses to precious Aaron...Nancy O'Brien

  2. Chandelle, my heart is breaking for you! I have asked God to hold you & Aaron tight in his embrace & shower you with HIs Love...letting you know He is by your side or carrying you throught these excruciating times. Just know that the most important thing to Aron is to know that his mommy is there for him, to hug him & love him forever & always!!!!
    Is he too young to have a pen pal? Would he like Dani & Kate to send him some letters or drawings...or a puppy? How about a robot? XOXOXOX Love Alida

  3. Chandelle, You don't know me but I came across your blog through Christy Burns. My daughter just had an unrelated donor allogenic bone marrow transplant for leukemia on April 4, 2012. She was 2 years, 8 months at day 0. We live in Sanford and she goes to Armold Palmer for treatment but had the transplant in Seattle. During her hardest time inpatient music therapy did wonders. It got her up dancing and smiling bigger then I have ever seen. If Cinncinnati doesn't have music therapy, maybe a cd with some of his favorite songs. She also liked to read books. These are things you could also do to stimulate his mind even if he wants to just lay in bed. She was not much of a colorer either but really liked the silly faces sticker books. You can get them at beaver books.com for $2.95. Another thing she really liked is looking at pictures and video of herself and family. Finally pretend play with stuffed animals was another favorite once she started feeling a little better. I hope this helps. If you are ever interested in the future when you are back home, meeting up with a fellow BMT family I would love to.
    Many Blessings,
    Nicole Moore n.moore@mail.com

  4. This may be a little further out there and I am sure the hospital will put up a bit of fuss, but figure its worth a suggestion. With my MS, stress is a big trigger with my health, and my fish and koi pond are kind of like a therapy where I can relax with them and let things go.Can he have a small fish bowl or similar next to the bed? The tanks can be pretty small with 2.5 to 10 gallons and such. Care on those things is easy, no real impact on the hospital and it may give him a good distraction and lift his spirits....Jim Fisher

  5. If he has a pet at home see if you can bring it in for a visit . If not the hospital probly has a program for pets that visit older people and sick children. Its amazing how a person who is totally wore out and depressed will respond to a animal. My prayers go with you and your beatiful boy.