Onward

» Posted by Emily the Mom-cologist on May 2, 2012 in Updates | 9 comments

Another phase of treatment down. We have finished Consolidation! Next Ethan moves on to Interim Maintenance. We are enrolled in a research study testing high dose methotrexate. Unfortunately this means we must do several hospital stays over the next two months. I feel the benefit outweighs the inconvenience. High dose methotrexate is already standard of care for B-cell ALL kids and has shown great promise in preventing relapse in T-cell kids. The methotrexate is given via IV and then 48 hours later a second drug is given to inactivate the methotrexate. Then we have to wait for it to clear the bloodstream before we can go home. So we will be there at least two nights but it maybe up to six nights. We will receive the same treatment on May 21st, June 4th and June 19th.

Giving the state of the SCCA unit, we are not very excited about being there. However we’ve chosen to start on a Monday because that is their lowest census day and the chance of being stuffed into a three person room is lower. To make this easier for Ethan I’d like to ask for some volunteers to mail a “hospital fun envelope” that he can open while we are there. What might be in the envelope: a hand written card, a coloring page or fun worksheet of some sort, a short story or article out of a kids magazine and a self-addressed envelope so that he can send a message back to you. He truly delights in opening letters and adding to his “wall of love”. So, if you would like to put a little sunshine into his hospital stays please reply to this post with which hospital dates you want to send a hospital fun envelope. I’ll update the list below as people claim a date and multiple people are welcome to send envelopes for each hospital stay. Remember to mail a few days beforehand so it arrives on time. You can find the address here. Also, you don’t need to know Ethan to send him a hospital fun envelope.

• May 7th-9th: Elyssa H. & Lisa S. & Laurie
• May 21st-23rd: Amanda M. & The Mabes & Lisa Z.
• June 4th-6th: Aunt Marti
• June 19th-21st: Liz & Peter

Along those same lines we’ve created a meal registry for the first two nights of each hospital stay. What we discovered over the last three hospital stays is that Ethan eats much better when the food is “normal” and that he doesn’t like the typical hospital fare. It also helps the normalcy of our family if we can gather at his bedside to have a meal together each tonight even if it is under the less than desirable circumstances. If you would like to bring us a meal in the hospital we would be exceptionally grateful. You can sign up by clicking here.