Tuesday, May 19, 2009

Time to Digest Things

Another busy day today! Brady and I went to his first official PT appointment in Rochester. Wasn't the PT shocked to see Brady walking down the hall to the room. We were there about 2 1/2 weeks ago for his evaluation at which time Brady was only starting to walk on carpet. He didn't walk at all during that appointment. Her mouth just hung open as he proudly walked down the hall and started exploring all the toys in the room. He has a great rapport with PT Linda. He played with her easily, let her touch him, and was easy going and silly throughout the 30 minute session. Hooray for Brady!

Okay, so after 24 hours to digest yesterday's appointment with the oncologist, our conclusion is that we are not satisfied. A fellow NB mom, one whose precious son is no longer here on this earth, emailed me after reading my post yesterday. She gently reminded me that being okay with sitting back and waiting may not be the best idea. She reminded me that NB is a sneaky and unpredictable disease. Her son had a vague area on a scan that they were told was nothing to worry about and 3 months later it had grown to be bigger than the original tumor. These are not stories meant to scare you or me, this is a reality, this is Neuroblastoma. I read about precious children who are dying everyday, children who have achieved cancer-free status only to have this terrible beast return.

Matt and I have had a chance to regroup and to talk about things. We throroughly read the radiology reports which are complicated at best. There are several sections of the report that raise questions for us. Some of what they noted on the scans just doesn't mesh with what we were told happened during surgery. For example, Dr. L told us that he only removed a piece of Brady's 4th rib, however the scan reports note some sort of involvement in the 5th and 6th ribs. This is our Brady, we cannot just sit back and trust that everything was gone over completely and that things are okay. Our plan is to send the scans (we have a copy) and the radiology reports to Dr. L at Sloan for his review and to request that their radiologist review them. This sounds easy, but if you have been following this story for a while, you know that this will take some work!

Please be praying for us. I find myself enxhausted these days and I know Matt is too! The incredible responsibility of staying on top of Brady's care is quite a job and it is taking a toll. When I start to feel like I can't go on, I think of all of the families who no longer can fight the fight, or those who have been fighting it for years. As you remember us in your prayers, please pray that all families affected by this disease will be strengthened and encouraged today.

13 comments:

  1. Meg, you and Matt are such great parents. I can't imagine how exhausting it must be, but you are doing an amazing job being there for and advocating for your baby. Demand results.

    -Rosalie

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  2. I agree with Rosalie. I think that the fact that you have the scans and reports means that you should act on them. Most patients don't get such info in print, if at all.
    Prayers are with you!
    Anne and Ed

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  3. Keep fighting!! This is your little boy at stake. How I wish I was closer so I could offer you hugs and support.

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  4. Your family is in my prayers everyday.

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  5. Your family is in my prayers everyday!

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  6. prayers for wisdom for you guys...

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  7. It seems like so much work but you have to know that God must be guiding as you stay on top of these things. We think of you all and pray for you everyday.

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  8. sending prayers for your family and all the others walking the same path.....God bless.

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  9. Meg,

    I am so glad that people who have gone through this are reaching out to you and sharing their experiencs!!

    You are the best advocates for your Brady!! The fight might be exhausting but the Lord will be next to you, carrying you at times. Lean on Him, draw your strength from Him!

    Sending you good thoughts and prayers!
    :)

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  10. YAY for brady!!


    HUgs!! Keep fighting to get results and for people to listen and actually talk to you. Hugs!!

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  11. Prayers and loving thoughts are with Precious
    Brady and all of you!

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  12. Matt and Megan,

    I know that it seems like there are brick walls when it comes to getting correct and thorough information, but keep fighting for the info. You are both tremendous advocates for your children and that advocacy will lead to the answers you are searching for. Our prayers continue for you all. Woo hoo Brady!!!

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  13. Megan, I had the honor of meeting you and some of the family at the benefit last Saturday. I was one of many who have lifted you and little Brady up in prayer. I purchased one of the bracelets and have worn it ever since. I work at a Christian based daycare. I assist teaching 3 year olds. During circle time one of the little guys asked me what that was on my wrist. I told him and the other children (12 in all) that it was a bracelet that I wore for a sweet lttle boy just a little smaller than they were. When I look at the bracelet it reminds me to say a special prayer for Brady because he is very sick. They all said at the same time, I want to pray for Brady! So there we were all folding our hands and bowing our heads praying for Brady. After I said Amen they wanted to pray again. I told them to say a special prayer for Brady when they say their prayers at home tonight. It was sooo tender and touching that I could of cried...but I told them how very proud I was and how very special they were also. I knew God was listening to their prayers. And we will continue to pray. God Bless......You are surrounded by family and friends and prayers from even the tiniest of children. Sue Knapp

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