Sunday, February 8, 2009

Brady did great overnight (everyone did actually!). Things were so chaotic here this morning. The kids had a fun morning playing, it's amazing to see Brady jump right back in. For the most part they do their own thing, but watching those times when they interact is precious. They each have a rocking chair in the living room, and back when Brady was starting to have trouble with his gross motor skills, it took him a few weeks to figure out how to get into his chair by himself. Then he got really good at it and could climb up and down with ease. This morning I watched him crawl towards his rocking chair, looking rather determined. I wanted so bad to go and scoop him up and put him in it so I didn't have to see the struggle I knew was coming. I resisted and watched him as he tried to push off of his right leg to stand. His right leg seems a lot weaker and less coordinated. He tried 3 or 4 times without success to pull up. But THEN...he did it! He pulled to stand against the chair, then climbed right in. He turned himself around, sat down, and just looked at me with this sly smile...those moments are amazing. What a proud mommy I was!

A few of you have been asking about Matt's work schedule. He has been off since Brady's diagnosis, about 2 1/2 weeks. Certainly, I don't know what I would have done without him during this time. Right now he is going to be home for the first part of the week, and probably go back by the end of the week. He will take time off as needed I guess. There is just no way to predict things in a situation like this. Brady's blood counts are expected to drop by next weekend, so infection and needing blood transfusions are good possibilities. I think we are planning on having him off of work during hospital stays as well.

We have been so blessed (I know I keep saying this, that is becuase it is true!) by everyone who has reached out to help us during this time. We are still going to need to lean on those around us during these next months, and it is so comforting to know we have to many willing to help. Unfortunately we can't accept extra visitors right now, especially children. Chemotherapy compromises Brady's immune system, so any simple infection can be very serious for him. We making every effort to keep sickness out of our home, which is especially difficult with 4 kids under 2!

One more thing...the website I have mentioned before will be up and running very soon. I will have a link to it from this blog. The website will house all information regarding fundraising and will coordinate all of our "helping hands" in areas like meals, groceries, and volunteers. My brother, his wife, and sister in law have been working hard on this and I can't wait to see the finished product!

9 comments:

  1. Hey Meg,
    I'll be watching for the site. Due to my own kids being so young (and frequently sick, which Brady can't have), I can't do much on the volunteer side (sorry!), but I'd be glad to send groceries. If you're in need of a nap, a cup of tea, or someone to vent to while you're out in Rochester, you and Matt are always welcome at our house.
    -Rosalie

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  2. Praise God, so glad you're home. I'm so overjoyed to hear how Brady jumped right in crawled and played. Children are amazing.

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  3. Hi Megan, My son Sean is also a triplet and also has stage 3 intermediate risk Neuroblastoma. I wanted to let you know that he also has NB involving the spine, L1-4. He was diagnosed at 11 months old. He is not 6 years old, and he is fine!! He had 1 round of chemo in Boston 9/03, followed by an "incomplete" resection at Sloan 10/03. We decided to take the "wait and see" approach rather than to continue chemo. Sloan does "color outside the lines". He had a second surgery to repair his L ureter 6/06? He has no residual effects, and other than his scar, you would never know that he has had cancer. I wish your son the Best. Please feel free to contact me if I can be of any help. There is lots of info at www.nbhope.org and also at www.loneliesthour.org. Please visit us at Sean's site http://www.caringbridge.org/ma/seanhanson We live in Cape Cod, Ma. Sean also has a big brother, Scott, 9yrs. and a half sister, Tiffany, 23yrs. His triplet sisters are Kathleen and Heather.
    God Bless, Love, Ellen
    ehanson89@aol.com

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  4. http://www.acor.org/search.html?searchcrit=neuroblastoma&where=mlist

    689 Neuroblastoma families online-Most kids are high risk, but you will find a wealth of information here. There are low and inter risk families too. You can ask any ?, any time, and these amazingly well informed parents will help you in any way that they can.......

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  5. Megan and Matt,
    One of the hardest things in life to have to let your children struggle to learn. And you will never feel it get any easier. I am sure your parents have a difficult time seeing you and Matt work through Brady's illness.
    Enjoy every minute together. My prayers are with all of you!
    Love, Deb R.

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  6. Matt & Meagan,
    I sure hope you don't have any more plumbing problems but... if you do my husband works for a plumbing company.He has access to the store 24-7.Sooo if ever you need his help day or night don't hesitate to call.I'm so glad to hear that Brady is getting right in there and playing.It's got to be great to be back home.Enjoy your time home!! Prayers are with you all.
    Martie

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  7. megan,

    just found brady's web site. We wanted u to know u have been in our prayers.

    Aunt Lu & Uncle Jim Wilcox (Kristen)

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  8. Hi Everyone!!!
    This is Emma Riggi and I just wanted to tell you that I read what you write everyday and it is truely AMAZING :) I am sooo happy to hear everyone is doing ok!!! Your family is in my prayers.

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