Good things come this way.

We will be making our trek to St. Petersburg next week to begin the treatment process, it is such a relief to be able to write that. He will be getting his line placed as an outpatient a few days before so they can run some tests and give him some medicine prior to treatment. His 'conditioning' will take eight days then his transplant will be on April 18th. Once we get up to the hospital and admitted I will keep everyone updated on how things are going. The next week were are spending at home chemo free with lots of love and food. I am hoping a few extra pounds will help out once his lack of appetite kicks in. I know some people have fundraising efforts in the works and I can't put into words how grateful we are for the generosity of others. To anyone who has been asking how you can help, I finally have a solution for you! Today we got a trust account set up for Ryan's supplemental needs for medical bills not covered by insurance, help with car payments, and things that will cheer him up in the process. You can also make donations in our name to the Ronald McDonald House to help with the cost of our stay during his treatments, there is an area on the RMH website to make a donation or you can send a check to the address below and just write a note with the payment letting them know the payment is for our stay. Thank you so much again everyone! I have set up a PayPal Account for donations which is linked to an account at Chase Bank that is able to be found by my name if anyone wants to make a donation at the bank. Once I have solid information about when and where the fundraisers will be I will post to make sure everyone is in the loop. Like I said before keep up the prayers, positive thoughts, and candle lighting! Lots of love and hopeful hugs! 

Ronald McDonald House of Tampa Bay

35 Columbia Dr

Tampa, Florida 33606

Progress.

The transplant doctor has decided to proceed with the 8 for 8 match that is CMV negative. They have proposed some dates to the donor. Once the donor picks the date that they are able to donate we will know when we are getting admitted. We have two days of pre admittance testing to do at the hospital next week. As soon as we know more we will continue to keep you posted.

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