Wednesday, February 25, 2009

We're Home

We arrived home at about 3:30pm!!! Brady tolerated the chemo so well again! No nausea or vomiting so far. Brady took a nice nap all the way home. His hair had been falling out all day, all over the place. We decided to just buzz it into a really short brush cut (almost shaved). So, it's gone and we are moving on...

We had many consults with different doctors today. Here is a summary:

1. Neurosurgery came in and looked at his back incision. Everything looked good, his reflexes are better than before surgery. He is continuing to amaze us by doing new things all the time. Some are just subtle differences in the way he moves. Other times he just seems more daring, like trying to stand for a second independently.

2. The Physical Therapy department came in and we discussed what options there are for treatment for Brady's gross motor delay. There is a pediatric PT who works at a Strong PT clinic that is an option. We also contacted CP of Rochester and discussed their facility. Early Intervention is still an option as well. So we continue to try and figure out what will best suit Brady's needs.

3. We got the results of the final histology report from the tumor. This test came back negative for chromosomal defect. Basically, it is another plus in Brady's "favorable" column. This was BIG news! Praise God!

4. We had a detailed meeting with the oncologist. Today I was finally ready to see the cancer on the scans. She brought in a computer and showed us the MRI from the day of diagnosis. It was absolutely shocking to see the tumor and exactly how much his spinal cord was being compressed. If you think of his spinal column like a circle, the actual spinal cord itself was a tiny dot just pushed way over to the side of the circle by this tumor. We also were able to see the mass that extends into Brady's chest wall behind his lung. She compared the size of that mass to a golf ball to plum-size. Until today I just couldn't bring myself to look this disease in the face. I'm so glad I did today though, as I feel so much more knowledgeable about what we are dealing with.

5. We have appointments for a repeat CAT scan and MRI on March 5th at 8am. These will be done at the same time under general anesthesia. These tests will show how the tumor has changed due to chemo (We're praying for BIG change!) We will find out that evening or the next day the results of those scans.

6. Our oncologist has contacted Dr. Laquaglia at Sloan Kettering (he is the leading NB surgical expert). We are waiting to hear back, but the goal is to take our two scans down to NYC the week after they are done and meet with him. We aren't sure yet if surgery will happen in that same trip, or if it will be scheduled a few weeks later.

So, there is a lot to process today. I really like days like today though, I feel like we are getting somewhere. A week from Friday we will have our answer about what the 2 rounds of chemo have done. Our doctor is hopeful that the chemo and the upcoming surgery could be enough to get rid of the cancer, but also cautioned us that further chemo/surgery may be necessary.

My friend from New Mexico is flying in tonight to spend a few days with us. It should be a breath of fresh air for all of us and hopefully a chance for some fun!

God continues to faithfully hold us in His hand, I hope it is crystal clear that He continues to work miracles in Brady's life everyday!

10 comments:

  1. Sounds like a great day! Good progress all around. I'm glad Brady's doing well, and you and Matt have a better sense of what the next couple of weeks will look like. Enjoy your time with your friends!! :)

    -Rosalie

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  2. Oh I am so glad you got your own room, I was praying that last night! And I bet he looks cute with a shaved head. Poor baby! I am so glad he tolerated it well...such a strong little boy. Have fun with your friend and I can't wait til the 5th when you get to know more.

    Til then I'll keep on praying!

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  3. What?! I can't believe you are home! Thought you'd be in for four days or so and home on the weekend! Have you heard this praise song? "You dance over me, when i am unaware, you sing all around but i never hear a sound. Lord i'm amazed by you, and how you love me. How deep, how wide, how great is your love for me!" In your darkest hours this has been evident in your journey. Much love to you!

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  4. Oh yay! Home!!!! That is wonderful! I thought you'd be there for a few days, I'm so glad you are all together again! And here I just put some pictures on the blog for you to see and cheer you up at the hospital...no need for cheering after such a great day of good things! I'm so glad we got those pictures done with his beautiful head of hair! I'm going to hope the loss of the hair is a sign of the shrinking cancer too! (as someone else said) And as a mommy I totally understand all the feelings you are having. Any mommy or daddy does. I know the war isn't over yet, but today was a great day of winning little battles! Enjoy being home!! I will sleep so well tonight knowing your are all together under one roof! Lots of prayers that Brady continues to do well!!! :)

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  5. I am so glad to hear that Brady is back home again. He sounds like one tough little monkey!! :) We continue to keep you guys in our prayers and will be praying for GREAT results from the new scans. I bet Brady looks adorable with his buzz cut! :)

    Susan B

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  6. Hip, Hip Hooray!!! We can see God is at work in you and your family! We'll keep praying that the nasty cancer will be obliterated by the chemo . . . or God Himself!!! We love you!

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  7. Keep thinking positive and stay strong! I know next week the results of his scans will bring good news to you and your family!

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  8. So glad to hear the positives- praise God! Just keep in mind we are always praying for Brady and your family. Also keep me up to date when you are headed to NYC I will meet you there. Much love!

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  9. Meg and Matt,
    Pam shared the GOOD NEWS! with me at school today. I was so surprised that you were home.
    God is wonderful. When we keep our eyes on Jesus and trust in God's Will, mountains will be moved.
    I can hear the strength in your voice and know that God has given you that strength to make the right decisions for Brady.
    God Bless everyone and I am so grateful to be able to be part of this faith journey with your family.
    Love and Prayers for Peace,
    Deb R.

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  10. I am so happy you are home. Brady is one strong little boy. God is going to work miraacles in his Life. I have no doubt! He has BIG Plans for Him!

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