» Posted by on May 4, 2012 in Updates | 8 comments

Well. Dang. I should just give up on trying to predict how this is all going to play out. We went in for our weekly appointment today and instead of getting our start of Interim Maintenance chemo we got sent home. Ethan’s ANC (natural immunity) was 135 despite having had no chemotherapy for nine days (normal is at least 1000). He qualifies as severely neutropenic which means: no chemo, no moving on to Interim Maintenance and no checking into the hospital on Monday. I expect it may have been a result of the massive inflammation his body had to deal with after the anaphylactic shock. In any case, I really wasn’t expecting it. This is the lowest his ANC has been since he was diagnosed. I was literally dumbfounded. So Ethan is officially “bubble boy” until next Friday when we do labs again. His doctor has assured me that it’s not unexpected for this to happen. Many of the drugs he is getting have a cumulative, long term effect and most kids do not stay on schedule or avoid delays in treatment. Still, we are pretty bummed.

So, those who have offered to send “hospital fun packs” are going to get bumped a little.

  • Confirmed May 14th-16th: 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.

Please pray that Ethan will not get sick. If he spikes a fever right now we will get hospitalized immediately. Both Elyse and I have had a viral cold in the last two weeks and I’m praying fervently that Ethan would be protected from that. We have also had a lot of friends in the house this week. So we are blessed that he hasn’t been sick yet. The doctor said that some of his bloodwork showed signs of growing immunity… that he is on the cusp of a higher ANC. Pray that this is realized quickly. In addition, a small thing… we had planned to travel to North Carolina for a family reunion on June 23rd. I’m praying that we can somehow make this work still.

We are praising God that Ethan is in exceptional spirits. He is laughing, playing and acting like a normal six year old. He is happy and vibrant. We are so blessed in this way.


  1. We are praying for your sweet boy. Thankful that we had a fun playdate, praying that there will be no ill effects from said playdate! You can do hard things!

  2. Can you tell me about the “fun packs”? I might want to purchase one for Ethan. I’m Kate Rollins cousin.

    • Kate’s correct. If you want to make a fun envelope for Ethan, there is more info here: http://fontesfamily.com/?p=338

      • I’ll take June 25th – 27th.

  3. Matt,
    I think the fun packs are something people volunteered to create… full of things to entertain Ethan while he is in the hospital. Like the princess sticker book and monkey you sent for my girls :)

  4. I just signed up for June 4-6th. You can sign me and Taylor up for June 11-13th instead or whatever works best!

  5. Aw…the “hurry up and wait” part of chemo. The emotional ups and downs, the not knowings…Emily, the one main thing I remember from all of that? I remember learning to trust and believe over and over and over again that God was in control. Period. (And why would this be any different from how our “normal” life is? And why would learning to trust and give everything over to Him constantly be something we always have to be reminded of?) Keep looking up and knowing that the Lord of all IS in control and is timing the cell growth in Ethan’s body to be exactly where it needs to be for the chemo to be THE most effective. Praying in So. Ca – for all of you!!

  6. Can you bump me down to June 11 – 13 for the fun pack? I’ve got a double ear infection right now and I’m just a little weary of mailing something to him right now while I’m so sick. I don’t know how long germs live on paper; it’s been sitting in my car since I put it together. I just want to be healthy before I touch it again. I’m probably just super paranoid. Thanks!

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