Tuesday, August 4, 2009

ANC down, but were going to Disney!

I bravely took both the boys to Ezra’s chemo appointment today, I hate to wear out my babysitting options, so I sometimes have been taking Rowan with us, I figure it helps him to understand a little as well.

Ezra’s ANC was hovering right at 500, but he was still able to receive his chemo cocktail. If his number would have been below 500, he would not have been able to get his chemo. If that happens they wait a few days and retest the blood and then hope the numbers have risen enough to get the chemo. It may happen next week, we will just have to wait and see. We are just living under the assumption that he is neutropenic this week.

Although his port wound is healing really nicely, he won’t be able to get another port until his counts come up, so we are kind of stuck in a conundrum.

While Ezra was getting his chemo, the life specialist came and talked to us. She told me that our family had been selected to go to a conference at Disney! They throw all of their Cancer patients name in a hat, and basically draw names. It sounds amazing, it is put on by the American Cancer Society, you can read more about it here.

Basically we get to stay for 2 nights free of charge at one of Disney’s Resorts, during Labor Day weekend. We will be able to attend different conferences about different topics, and meet other parent’s with children with Cancer. Then we get tickets to go to one of the parks! It is so wonderful, because we had a trip planned to Disney a week before Ezra was diagnosed, that we did not get to go on. I am so excited to gain more knowledge, and meet other parents. Not to mention the boys are going to have a blast! Even if Ezra’s counts are down, there are ways to work around it.

So that was super exciting news. We were at the appointment for almost 3 hours, and both of the boys were so great, they made me so proud.

In other news Rowan will be starting pre-school at the end of August. I am going in to meet with his teacher and the director of the center on Friday. Just to go over things I need to be made aware of, and I am writing a memo for the parent’s that they will pass out. I am super scared about all of the germs, but we are going to be really careful. It is impertinent that Ro starts school, he is just spinning his wheels at home. Every Dr. or nurse I have asked, they all tell me to put Ro in school. So I will try not to worry incessantly about chicken pox, and swine flu.

Well this has gotten really long. More updates to come soon. I will just leave you with a recent picture of little man.



  1. That is great congrats. I am praying for him daily!

  2. Your son is beautiful! I'm so sorry he has to go through this, but I read his story and all I can say is thank goodness for that spider bite! I have a cousin who is dealing with leukemia right now, and his mom keeps us updated. It's a terrible disease and it takes a brave person to go through all of the tests and treatments. I will pray for you and your family!

  3. Great news! Is it Disney World you are going to or Disneyland? I live an hour from Disney World and am a "honorary" Disney Mom (just missed making the official panel of 12) so get lots of extra MOM stuff about Disney..hints on where to go for kids, things to use, etc. Let me know if you would like, I will forward you my emails/newsletters prior to your trips. Also, I think I'll write "our pal" Oprah AGAIN and tell her about this as maybe she'd like to add to the experience so your family can REALLY have the royal treatment you all, especially little Ezra and Rowan deserve! Let me know if I can help make your trip any easier! Hang in there...we are here for you always!

  4. Fantastic!

    Hope his counts come up! The picc line is lots more trouble than the port, except with fevers as you well know.

  5. Let me know if you come up with a great germ disinfectant plan. I have a imm.deficent little one with trach and other compromised health issues and a 3 year old sibling who loves "school." What a tough position! I love your spirit. Keep your head up!

  6. Thats lovely, something to look forward to.
    I have two friends whose children had leukemia and one friend whose son had bone cancer. It was very very hard going through the treatment but they are ALL out the other side and five years or more down the line.
    I hope little man doesn't stay neutropenic for too long.

  7. Both of your boys are such cutie pies. I hope Rowan loves pre-school and I hope he thrives in school. Man, Ezra is going to miss him, I'm sure and I bet Mommy will too. Good luck with everything and as always I am praying for you guys.

  8. Beth, please let me know if you ever need a sitter for Rowan...even though I'm working, Pete stays home with the boys and Marley...and Alex and Ro could probably spend some time getting to know each other before school starts. Email me if you want to talk about it. We also have a 2-day a week nanny to help us out, so one extra on those days won't kill Pete at all, LOL! Take care and love to you all!

  9. This is my first time visiting your blog. What a beautiful son. I'm so sorry he has to go through that. Adding you all to my prayers.

  10. We are keeping you and your family in our thoughts and prayers.

    Mary Beth