Interim Maintenance Here We Come!

» Posted by on May 12, 2012 in Updates | 2 comments

We had another checkup on Friday. Ethan’s counts were better (ANC 850) so we are able to start the next phase of treatment. He had spinal methotrexate yesterday and we will start high dose IV methotrexate on Monday morning in the hospital. It’s a unique treatment. They literally pump him over the limit with this drug and then give a “rescue” drug (leucovorin) 24 hours later to shut off the effects before it becomes toxic. Then we have to sit in the hospital and wait until it clears his blood stream. They told us to expect to be in the hospital until Friday the 18th. We will repeat this every other week for two months.

We’ve asked specifically to be admitted on a Monday because it is their lowest census day and the chances of us being in a double or single room are better but not guaranteed by any means. Our friend Sam had this exact treatment last week and cleared the drug easily. We are expecting and praying that Ethan will do just as well.

If you would like to add a little sunshine to Ethan’s hospital stay, we are still taking sign-ups for people who want to send him a fun pack. What might be in the fun pack: 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”. Reply to this post to claim a date. 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.

  • Confirmed May 14th-18th: Elyssa H., Lisa S.
  • Tentatively May 28th-30th: Amanda M., The Mabes, Lisa Z.
  • Tentatively June 11th-13th: Aunt Marti, Rachelle, Laurie
  • Tentatively June 25th-27th: Liz & Peter, Matt S.

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.

What you can pray for:

  • that Ethan’s ANC will continue to rise and stay high, along with his hematocrit and platelets
  • that we will have a room to ourselves so that we can sleep more easily, better avoid infection and not go completely insane
  • that Ethan would eat well and particularly that he would drink a lot (this helps clear the methotrexate)
  • that he would handle the medication well and be protected from mouth and GI tract sores (a very common nasty side affect)
  • that Ethan’s sunshiny disposition would bless other families while we are there

2 Comments

  1. Hi! The Blankenships would love to send Ethan an envelope. You let me know when and I will make sure it’s there. Stay strong, Emily! I’m so blessed to see your strength and faith. Praying…big time!

  2. Dear Emily,

    I pray that God continues to comfort your family and give you peace as you journey through this valley. I pray that Ethan knows Jesus and that he knows the He is with him every step of the way; ready to hear all his troubles and ease all his pain. I pray the Lord would continually provide you all with blessings and joy in many forms and that He would keep you united and strong as a family during this time. Thank you for your courage to share this with others and for your honesty. May you feel God’s mighty Love in every sweet or painful moment. And may you feel His hand upon you and His arms wrapped around you every day.

    ~In Christ’s Love,
    C. Alley

Submit a Comment

Your email address will not be published. Required fields are marked *

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>