Tuesday, February 24, 2009

We're Here

We made it here at about 6:30 (We were half an hour late due to a stop at Mc Donald's for chicken nuggets---so worth it!) We got settled in the room for about 30 seconds before the nurses came in and wanted him stripped down to weigh him, and to do vitals. Brady really remembers this place and instantly started pointing at the door and saying "out." That was really heartbreaking. We met with one of the oncologists (not our usual one) and I feel bad for her because I just started asking all of our questions. I asked when they would be retesting his catecholamine levels (a urine test that is elevated in people with neuroblastoma--his levels should be decreased if the chemo is working). They put a bag on him to collect his urine, not sure when we will have those results. They told us they would be giving him decadron (the dreaded steroid!) and I just looked at her like she was crazy. Decadron is used as an antinausea med, last time he was taking it prior to starting chemo as a drug to help with post operative swelling. By the time the chemo started his dose was very low. They wanted to start with a small dose and increase to a huge dose tomorrow. If you remember though, he had a lot of adverse side effects (sweating, irritable, swelling, weight gain due to increased appetite). Let's just say we went back and forth on this one with her, and it was decided that he won't be getting it unless nausea is a problem. Our whole philosophy is that he did so well last time, let's just do the same drugs again. We don't want to add anything new unless we have to. I also "fessed up" that I had called Sloan about the possibility of doing the scans there. They looked surprised that we would do that and said they don't really see the benefit. I'm going to see if Sloan calls back tomorrow, if not I'll try again. I guess that decision will be ours.

I asked the doctor about hair loss. She said it would start anytime. After she left I put on Brady's pjs and I noticed hair all over me. It is Brady's hair, it all of a sudden started falling out once we got here. I just broke down at the sight of it (I left the room of course). You are probably thinking, "it's just hair, it will grow back, you knew it was going to happen, why are you so upset?" I just have a hard time knowing that he will now officially "look sick." On days he is feeling well it is so easy to let my mind forget that he has cancer. He looks like Brady, plays like Brady, smells like Brady... Now he won't look like Brady. I've seen cancer change people I love before and they don't look like themselves and it is a daily reminder of the illness inside of them. So that is why it hurts me so.

Matt is here now. He and Brady are snuggled in the chair watching basketball. Brady is getting 2 hours of fluids before the chemo will start. Matt will head home in a few hours. We are praying for a peaceful night...


  1. Oh Meg, I'm so sorry. The hair would have been hard for me to handle, too. Don't let the appearance changes get you down, though. I can see how they might easily do that, but just don't let it happen. You keep the control. Keep being strong for Brady. He needs to feel "the same."

    Good job advocating for Brady tonight. It probably wasn't easy, but he needs that so much. God is on your side, and you are on Brady's. You're both lucky. :)

    Still praying.


  2. think of it this way...maybe the lose of hair on the outside is a sign of the lose of cancer cells on the inside. it could be a sign of progress.

    hang in there! good luck tonight, brady! sleep well, sweet boy!

    :) karen

  3. Megan and Matt,

    We are lifting you all up! Know that it is okay to have every feeling that you have and you have every right to do what YOU believe is best for Brady Boy. God gave you the Mommy intuition!! We believe in the miracles of Brady's life and can only trust that there are so many more, even as he is doing round 2!

    Please Dear Lord rain down your strength again on this family. You have promised to be sufficient in times of need and always!

    Love ya,

  4. Oh Megan-my heart goes out to you with the hair. I would feel exactly the same. Try to think of how excited you'll feel when it starts to grow back and you get to rub your face on that baby fuzz hair again!

    Right on sticking up for Brady tonight! That must be hard to "go against" the "experts" in medicine, but you are the expert to Brady's little soul. YOU know what is right for him and his little spirit.

    Starting round 2 must be so scary, but you are another step closer to having your happy little guy healthy! So many are praying for you guys!

  5. Dear Sweet Meg,
    Tears are running down my face feeling your sadness and pain. I know that all of your Prayer Warriors want to help you carry this sadness and pain. Friendship multiplies our joy and divides our grief.
    I pray for continued strength for you and Matt as you push forward as Brady's health advocate. Ask those questions, push the doctors and nurses to understand that you have the knowledge to make decisions and not to be pushed around. Continue to call NYC and ask your questions. Brady is your child and you need to make educated decision for him.
    Rest tonight knowing that we are all praying our hearts out for Brady's healing.
    Deb R.

  6. Oh honey, I can't imagine how you felt seeing Brady start to lose his hair. Of course it upset you. The hair loss may be a daily reminder that Brady is sick, but this blog is a daily reminder that God is with you and so are many many people across the world. We're all praying for Brady's complete healing honey. Lean on God AND on the pillars that He has provided for you. Use this blog, and the comments to help you draw strength. Always remember the miracles that God is working in Brady's life, and also in everyone's life that is reading this story and praying for Brady and your sweet family. I know I don't "know" you or your family, but I sure wish I could reach out and give you a hug. You are doing an amazing job as a mommy and an advocate for Brady. ((HUGS))

  7. Megan-
    I check Brady's blog daily, and am praying that all goes well for him. Strength to you and your family. And I had tears for Brady's hair over here--I can only imagine how you felt. Best, Amy (GGG 5/29/08)

  8. i understand about the hair loss making you sad, it makes it more real. i'm so sorry you family is facing this and sending prayers your way.

    for the anti-nausea medicines, when they don't give him the decadron can they give him something less potent like zofran? or will that not make a dent. that is what our pedi prescribes when we get the stomach flu and works well. i had read it was intented for cancer patients undergoing chemo.

  9. I know this is comment is very late but my heart is breaking for you at this point. The thought of your sons hair on your shirt just made me cry. You are a strong woman. O pray you feel Gods arms around you and Brady.

  10. Brady is so lucky to have such wonderful parents. You both sound so amazing and strong. My husband and I are thinking of you all daily and praying whenever we can. Yes, continue to make decisions on your own and you will do the right thing. He is fortunate to have a Mom and Dad that are willing to do whatever it takes to get the best care for him. Wherever your healthcare decisions take you, Rochester or NYC, please know the prayers and warm thoughts will be with you. Julie Sklener


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