The only thing we asked for this Christmas has arrived. Finally...we received bone marrow biopsy results yesterday. The tests came back clear. His MIBG/CT scan and bone marrow are all CLEAR! Screeeaammm! This is the point where we can say he is NED (no evidence of disease). Its an amazing feeling, almost surreal. 15 months of continuous treatment has paid off. I am ready for Jace to have a break and be 2 1/2. I want him to wake up and go to daycare with his brother everyday while we go to work, play with his friends and for us not to ever be separated for weeks at a time. Personally, Im ready for a break, too. I cant believe his treatment plan is over. In September 2013, December 2014 seemed so so far away with lots of hurdles to clear. We did it! I told him his cancer was gone and he kept saying kick cancers butt. We tried to video it, but he was a little shy for some reason. Including good health in our prayers has turned into something more than just saying it to say it. Weve learned first hand what it means to not have good health being hit with Jaces cancer diagnosis. Cancer is on the extreme side, but its taught us a wealth of knowledge we would missed out on, survival in a different sense, fears of the unknown and gave us a true reality check of what is really important. I never dreamed wed be a family fighting cancer or should I say pediatric cancer! Hes too little to realize the fight he had on his hands. Its unbelievable what his body has endured. He knows no different. His central line is like a body part...its part of him. He knows whats expected of him during all dr appts and home maintenance. We are so lucky to have his cooperation. I usually lean towards Im glad hes at the age he probably wont remember this time in his life, especially when I think of something of the pain hes toughed out. But then I also have random thoughts wishing he could remember and realize how big of an accomplishment he finished at 2 1/2. He still keeps us on our toes. In the middle of the night on Monday, he woke with a dirty diaper which is unusual. His stools continued and increased in frequency, consistency and odor. Wednesday morning it dawned on me he has cdiff symptoms as he was lethargic as well. Scared us! By noon he was acting more like himself and continuing to eat and drink. I did call Dr to say Im worried about cdiff, so we went to Fremont Health to drop off sample and collect labs. Today cdiff was confirmed, so hes on flagyl. He is acting so much better, but his tush is paying the price of cdiff. Julie was called in a panic yesterday and is watching Jace through the end of the week. Shes a lifesaver! I dont know what our next step is. Cdiff recovery is first. It was mentioned his schedule may turn into a 4-6 wk clinic visit and every 12 wk scans. If I understand correctly, the first two years are have the highest chance of relapse, so hell have a more frequent appointment schedule. Weeks ago, Dr Lowas mentioned pulling his central line before Christmas. I think I can be swayed either way. Its still hard to believe we are at home. Weve been doing some holiday baking making up for last year. Jace is right in there helping with everything which often ends up being not so helpful! Ha. They definitely oded our cookies with the sprinkles. He also got another hairtut by Kara. Hes the cutest listening to her when she asks him to look down, sit still, etc. Jace is so lucky to have so many friends and supporters. Its the thoughts and prayers sent our way that pushed us over the finish line. We are also beyond blessed with the support weve received over over past year from meals, cards, msgs, and gifts for the kiddos, etc. Thank you will never be enough! God is good!
Posted on: Fri, 19 Dec 2014 06:17:57 +0000
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