Wednesday, January 13, 2010

It's Happening

This mom's heart is very heavy tonight. Brady's spine is changing, and it seems to be happening more quickly than the doctor expected. He had XRAYS today that showed only a slight increase (from 12 to 15 degrees) in his scoliosis (left to right curvature). However his kyphotic curve (front to back) went from 37 to close to 50 degrees. We knew that something was happening. It is obvious from looking at Brady's scar down his spine that it is no longer straight up and down. He has a hump to the right of his spine. His sitting posture has become more slumped over recently. To have this news confirmed is heart-breaking.

The doctor we have been seeing told me that although he understands why I wanted to bring Brady in today, he doesn't want to see him again for 6 months (we will be seeing a different doctor in 6 months), because frankly, there isn't much to do about this problem. Yes there are braces, casting, and even surgical approaches for scoliosis. However, to do any of these to the growing spine brings about other problems and also does not address the biggest issue, the kyphosis (humpback). So his opinion is that we wait, and see what happens in the next 6 months.

This is not easy to swallow for Matt and I. How do we just sit back and watch his spine permanently curve more and more with each day? I made it clear to the doctor that we are willing to go anywhere and research any intervention that may be cutting edge. He simply told me that there just isn't much that can be done to intervene or prevent this. Furthermore, there isn't research that reports long-term outcomes of surgery's like Brady' just isn't common.

So. Here we are again. Another great big reminder that we, or course, are not in control. I would be lying if I told you that I wasn't crushed that God is not answering this prayer of mine. Every night I pray over the kids, and one of my prayers for Brady has consistently been for God to spare him from a spinal deformity. I wanted to protect him from having a life-long problem like this and the pain, limitations, and frustration that will come from it. The reality of the long term effects of pediatric cancer is often overlooked when a child survives. The facts are that most survivors experience negative effects from surgical intervention, long term effect from chemotherapy, and sometimes secondary cancers. It is such a battle to balance the feelings of "I should just be happy that God has brought us this far" with the feelings of "Brady deserves only the best from here on out." It will take me some time for sure, but I'm praying that God restores my spirit and sees Brady through this as He has so faithfully done.

On a lighter note, I couldn't have asked more of Brady today. We started our morning at PT and he did a fantastic job. He did all that was asked of him, showed a ton of improvement with independent jumping, and couldn't have been sweeter as he interacted with Linda. We had some time to kill before the next appointment, so we went to breakfast at Perkins. Brady was a total gentleman and I made his day by ordering him pancakes complete with sprinkles. I actually had to cut him off because we had to get to the doctor, or else I think he would have cleaned his plate! At the appointment they started off by doing the XRAYS. He has to stand up while having them done. In the past I have had to wear the protective apron-thing because Brady needed me to stand with him and comfort him during the XRAY. Today the tech asked me how many times I had been with Brady during a scan. I honestly couldn't remember, and she next reminded me that I was also absorbing the radiation each time, so she suggested that I should stand behind the protective glass. For a split second I thought "I can't, Brady will get upset," but I remembered that he has come so far recently with his level of comfort and trust. So I told him I would be watching him through the window and....HE DID IT! No tears at all. This was the first time I cried today:)

Thanks for letting me get this all in my little free-therapy-zone! I'm really down, I'm worried, I'm discouraged, but my faith isn't lost;)


  1. Praying for you all! I wish the news was better. :(


  2. Oh Meg, I am so sorry for your news. As always I will keep Brady and you in my prayers.

    I have always been a believer in the saying "God does not give you more then you can handle". But one day, many months ago in one of your posts you rebuked that saying with the response that God does sometime give us more then we feel we can handle, and there within lies our need and ability to trust and have faith in Him.

    I pray that you will have peace in knowing that God has big plans for Brady and they are perfectly set out and ordained.

    I know, easier said then done.

    I am praying for you!

    (just finishing up a note to you about how Brady and you have touched our lives for your Jan 21st project!)

  3. That really sucks Meg! Can a chiropractor help at all? Since they work with aligning the spine, I figured it couldn't hurt to mention it. I dont want to see Brady Boy suffer any more than you!

  4. Oh Megan. A big, big hug to you all. I'm actually a bit teary. Please Lord spare Brady any permanent ongoing spinal issues.

    My scoliosis is regarded as very severe but I had no kyphosis involvement.

    May you and Matt be guided by your intuition, your research and may God enlighten every practitioner involved in Brady's care.

    With heartfelt prayers for you all today.


  5. My heart breaks for a mom you always want the best for your children, and yet you are faced with this. I PRAY that God restores your faith and understanding in Him, for he created all things for His glory and purpose. I PRAY for continued success and healing of Brady...God is in control, and His will will be done. Much LOVE to you all!!!

  6. I still have Brady's prayer card on my bulletin board that I see EVERYDAY!!!!! Sorry that the news was not better. hugs to you.

  7. I have been following your blog from the beginning. I have been a patient at Step By Step. At age 8 my son was diagnosed with Scoliosis and the Drs. also took the wait and see approach. This did not sit well with me. He had two curves and as he grew he started having pain. Did some research on chiropractic care and scoliosis and decided to give it a try. Was very particular what chiro to take him to. My son will be 13 in July and gets adjusted regularly and his pain is now minimal. As puberty begins to happen, he will be watched more closely. There really is not a lot of alternatives other than bracing and surgery. I was not willing to sit by and wait for that to happen. I know Brady's situation is much more complicated, but thought I would share our experience.

    God Bless,

  8. I'm so sorry to hear about your heavy heart today. I know Brady's kyphosis is probably much different, but I do know someone who had a severe curviture of the spine corrected as a young adult.

    Sure there may be things that he can't do, but Brady has done so much more than other kids already. Maybe it's not the kind of thing you wanted him to do and go through, but he is SO strong. I know I'm not saying anything that you have already said yourself. There will be something out there to help him and if there is ANYONE out there who can find it, it will be you!

    virtual hugs to your entire family!

  9. It is time for us to renew our prayer effort. Let's step it up a notch, everyone. Megan, I know that you and Matt will search for and find the correct treatment for your cutie pie.
    Thinking of you all,

  10. Oh my...I have been following Brady's story for quite awhile I just haven't ever commented. I am praying so hard for you and your family as you deal with this difficult news.

  11. praying for brady.......
    God bless him and your entire family....

  12. There seem no words appropriate today. Hopefully your spirit is renew this morning by God's love and you will have a clearer picture of what you can do to help Brady through this next stage of his journey. Love and prayers.

  13. My heart goes out to you. What makes the surgery that Brady had, cause this deformity?

  14. Meg, a verse from Psalm says that "God will not leave you alone, for He made you." It may seem like he is not answering your prayers, but He is. It just may not be what or how you had thought it would be. I pray that God's love surronds you and your family and that you are reminded of His love everytime you look at your family----He created them. Our prayers will continue. God Bless, Love - Heather

  15. Meg,
    You and Matt are Brady's best advocates. Don't just wait, put your feelers out to others and see if there isn't a doctor that will be proactive and not wait!

    The prayer needs to be, "God help me find someone that will help NOW!"

    Think out of the box!

    Love and prayers,
    Deb R.

  16. God is in control, Megan and Matt, never lose faith that there is a purpose for this setback. Though you don't know what it is, God does and that should sustain you. Know that we will continue to pray for you daily and god will provide.

    Here is a little food for thought; When sister Ann took sick and was failing, Pastor Stan took a fall off a latter at work. I thought, why would this happen when the family was going through so much with sister Ann. Well I think it was my cousin Julie who said that God knew Sister Ann wasn't long for this earth and in order for Pastor to be there for her remaining days God would have to slow him down. Well a broken hip sure slowed him down for the remaining days sister Ann had. When she passed he began to heal quickly. Though we don't always understand why God allows things we must never forget he has a purpose. Our love and prayers to you all. You go Brady, show em all little man!!!


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