The waiting game

Our visit at All Children's went well but we left a little disappointed. The 10 for 10 matched donor is CMV positive and Ryan isn't so they don't want to expose him to it. (CMV is a virus that once you've been exposed, which most of us have, it stays in your blood forever.) There is an 8 for 8 match with a DQ mismatch that is CMV negative which is looking like our better choice now. They activated two more donors to see if either of them could be a perfect match. There were also a few cord blood matches but they try not to use cord blood in case he relapses they like to use the same donor again. Since Ryan is responding well to the oral chemo and his other symptoms are in check for now they aren't in a 'rush'.  My biggest concern is that JMML can take a turn for the worst with no warning. It has taken me the last two days to even write this post, just not wanting to believe it myself. It is looking like another 4 to 6 weeks until we get admitted. We also met with the surgeon, she will be putting in a central line for Ryan to get meds and blood drawn through. Luckily he will be allowed to wear all of his normal clothes as long as there is still access to his line, which was a reliefe. He just woke up from his nap so that's my cue. Keep us in your thoughts and in the next week or so I should have more info about the fundraising efforts. Have a great week!

::Happy Dance::

The last few days have brought some great news! They have officially found a 10 for 10 match for Ryan's bone marrow. We have an appointment next Thursday at All Children's to meet the rest of their team and find out when we will be getting admitted. Overall he is still reponding well to the chemo at home although his spleen and liver are still enlarged. We have been making weekly visits to the oncologist because he is basically Ryan's primary care physician until transplant, today they were happy with his blood counts. The nurses even gave Ryan a gift with a knitted beanie, a blanket and some books! So keep up the prayers, they are working. As soon as we know the date he will get admitted we will fill everyone in. Thanks everyone!!! 

Positive thoughts in action!

If everyone could go to this Facebook page and like it, 

this is the attorney that has graciously offered to create our Special Needs Trust pro bono. The universe is finally giving us a break! 

Eric J. Olson, Esq., Attorney at Law

Another week in the books

It's about that time to update our blog again. Not too much has been happening lately, from what I heard the waiting can make even the most sane people go stir crazy. The oral chemo was making his platelet count drop into a level that was not to their liking so we took a break for a week which allowed them to come up closer to where they should be. Unfortunately during that week his white blood cell count almost doubled so they lowered the frequency of the dose and we'll see how he reacts. For everyone who has been asking about fundraising efforts I am in the process of setting up a supplementary medical trust for all of the donations. This will be an account anyone can put money into and legally can only be used for things that will enhance the quality of Ryan's life. We also have some fantastic family/friends that are working on some great ideas as well; we will have t shirts for sale as well as para-cord 'survivor' bracelets, bake sales, a cord wood raffle, a photo shoot raffle, and many more ideas. Once again I will keep everyone updated. I am hoping that by this time next week we will have everything set up and we can start the fundraising bonanza. Thank you again for your continued support! Ryan's Army on Facebook

Be The Match Walk / Run

I'm kicking off my fundraising efforts for the Be The Match Walk+Run. 100% of the 

event proceeds will add new marrow donors to the registry, help patients with 

uninsured costs and fund research. Please support my efforts!

 Ryan's Army Team Site