Tuesday, September 8, 2009

We are at day -3

Hello all!! Today we are 3 days away from transplant--YIKES!! So we are at day -3. Transplant day will be day 0, and then we will count up from there!! At the 100 day mark, if D doesn't have any big issues, we should be free and clear and 100% grafted!! And then the next big milestone will be the 6 month mark (when its very unlikely that he will relapse).....oh how I can't wait for that day to come!!

Yesterday was a rough day for D. He woke up feeling icky (he feels like he has a bad flu--just yucky all over!) He threw up everything he ate :( Poor boy puked on me twice and pooped on me once....oh the joys of being a mommy!! We had a long day of cuddling and with a little help with some morphine at night, he was able to fall asleep. Today was pretty much the same story. He is not himself, and just feels yucky. He got some more platelets today and also a blood transfusion. The doc switched him to a soy formula and he was able to keep down two bottles today, but he could not keep dinner down :( He is now sleeping comfortably and hopefully has a good night sleep. The good thing is that he still has a rash free bum and there are no signs of sores in the mouth! Thank you Lord for that!! Most kids stop eating after receiving the chemo drug that he got today....so we will see.

Tomorrow and Thursday D is getting a drug called ATG. This drug will attack the cells in his body that cause the graft vs host disease and will hopefully cut down on his risk for it. To refresh your memory, GVHD is when the donor cells reject Dylan's body, and start to attack his system and cause problems. The doc says that he has a good chance of not getting GVHD because he has a 6 out of 6 match, so that is good news to hear. But we just have to take one day at a time and not worry about things that are out of our control.....easier said than done.

Erik's parents are going to be coming down for the transplant on Friday and staying with Erik and Dylan for the weekend. I am going to be going back to Phoenix Friday night for a MUCH needed girls weekend with my sisters and soon to be sister in law. We are hosting her bridal shower on Saturday, and then the girls are off for a wild night on the town....ok, maybe not so wild, but it will be fun times! I am excited to get away for a couple of days, but the mommy in me does not want to go. I have to override those instincts so that I can stay sane through the next couple of months. I need this, AND IF anything happens that I need to be there with my Dylan, I am only a couple of hours away :)

Please pray for Dylan's body as it gets ready for Friday's transplant. Pray for us as we are getting ready for the big day physically and emotionally. When we know what time he is getting the transplant we will let you know--that way you can pray during that hour. We always remember September 11th, and now we definitely will never forget it!! As we mourn and pray for the families who lost their loved ones, we rejoice that Dylan will be getting "life giving" cells. It will be a day we will NEVER forget. In hind site, we are thankful that this whole process is a short one. Right now, in the moment, it seems like FOREVER, but it really is a short period in time.....and he can be completely healed and the cancer in him can be gone....100%!! That is so amazing to me!!

Until tomorrow.....

Love you all!!
Michelle

3 comments:

  1. When one day at a time seems overwhelming, just get through it one moment at a time. You have so many people praying for Dylan and he couldn't be in a better place. We will continue to pray for God's protection in his little life!

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  2. Praying, praying, praying...

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  3. Your so brave though all of this, what an inspiration. It is truly our priviledge to pray for you all during this time. What a legecy for your little man to have.

    Michael & Ronda Ward

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