Hip Hip Hooray!

So happy. So thankful. So relieved. So encouraged.

I've felt discouraged lately. Life is hard. It gets me down.
God sends his mercy. God pours out his grace.

On the way to Brady's appointment today, I heard this song which was so encouraging to me.


Now onto the appointment. Brady's spine looks great! Can you believe it?
His scoliosis looks about the same (was 15 degrees, now somewhere between 12-18 degrees) and his kyphosis has improved (was 42 degrees, now around 35).

He had 3 Xrays and stood like a still soldier for all of them. Dr. Sanders was very encouraged by the results and thinks that Brady's muscles getting stronger in the past year or so has helped his spine hold steady as he grows. Considering his risk for instability (laminectomy at 5 levels) this is incredible. Some may say that this is "a great medical outcome," I choose to call it "answered prayer!"

I then asked the Dr. what, if any, restrictions Brady has in regard to physical activity. All of a sudden Tball is upon us, the kids love bounce houses, and of course there are the daily wrestling matches between brothers. Dr. Sanders looked at us and said, "No restrictions. Brady Williams have fun just being a kid!"

Tears of joy followed as I told him the story of that day, December 23, 2008 when the specialist told us that Brady would never play Tball because he was going to be permanently disabled with cerebral palsy. Two years and a few months later and we are a month away from opening day. A victory in Jesus that is contained in the 32 pound body of our little boy.

Thank you for continuing to pray for Brady. But for today, would you remember to thank God for what he continues to do for him? Now go listen to that song above:)

To the Doctor We Go

This morning I had several plans for the day, most importantly I knew that Matt and I would be taking Brady for his appointment with the orthopedic doctor. Well, that part did happen. But before that, Cara and I took a trip to Rochester. She has had a high fever on and off since Sunday night. Her appetite is off and she just hasn't looked well. My mother in law peeked at her tonsils today and she saw some "gunk" back there, so I decided it was best to get her in to see the doctor. That was my first trip to Rochester and back today! She did a wonderful job at the doctor, even enduring a strep test with a smile. The strep test was negative, but the doctor said that she has a virus that is going around. She recommended rest, fluids, and Motrin to control the fever.

Later in the afternoon Matt came home from work early and picked up Brady and I and we made our way back to Rochester for his appointment. I wish you could have seen how silly Brady was acting while we waited for the doctor. He had to have his shirt off so that the doctor could examine him, and he was just hamming it up. Matt and I were just laughing histerically at him as he continuously pulled his shorts up as high as he could and then dropped them around his ankles. Not many things are more funny looking than a scrawny three year old in Cars briefs!!! He truly is a goof ball. Matt took him for his XRAYS this time and I just teared up as I watched him happily and bravely march away to the room. He thinks nothing of such things anymore and even talks and interacts with the techs, nurses, and doctors. Where did my shy and fearful baby boy go?

We are absolutely so very impressed by our orthopedic specialist, Dr. Sanders. He is kind, compassionate, encouraging, honest, concise, and respectful. You many remember at our last visit that Brady's kyphosis had not changed from the visit before. His scoliosis had amazingly improved from 15 degrees to 5 degrees or less.

We are over-the-moon to report that his kyphosis (front to back curve) has once again stayed the same!!! Praise the Lord!!! Dr. Sanders was very encouraged by this! His words were that we are "getting out of the woods" as far as a malignant progression, or point of no return in regards to that curve. Children have rapid growth up until about age 4, and children with injuries like Brady are at greatest risk for spinal curvature during this time of growth. As Brady ages, hopefully (and prayerfully!) his risk of curve will decrease. It is very encouraging that the kyphotic curve (42 degrees) has not increased in the past 6 months.

Now his scoliosis (side to side curve) is a different story. Two visits ago, his scoliosis measured 15 degrees, then in March it measured only 5, and today it measured 15 degrees again. I'm still a little unsure about the hows/whys of this, but I think I understand that because Brady is young, his spine is still flexible which accounts for the differences in the curve. Dr. Sanders is still a little leery of the scoliosis and wants to continue to follow this. We will rescan again in 6 months.

So there you have it. Another chapter in Brady's journey. I hate to downplay doctor's visits like today. In all honestly, my eyes were filled with tears when Dr. Sanders used the terms "getting out of the woods" in regards to one of the curves. As emotional as I was, deep in my heart I understand that these orthopedic problems are small potatoes compared to what we have been through, and what we could go through again. And my heart longs every day to hear those words to describe where Brady is in regards to cancer. My mind is never far from cancer...constantly putting things into perspective when compared to that nightmare. We jump these hurdles, big and small, one at a time. We keep on jumping, all the while praying, that God will see us through each and every one. Thank you for your prayers.

I Interrupt Today's Trip Report...

to share with you some wonderful...

amazing...

NEWS!

We had our appointment with the new orthopedic surgeon today. Brady had a series of XRAYs to check the degree of his scoliosis (side to side spinal curve) and kyphosis (front to back spinal curve). If you remember, at our January appointment, his XRAYs showed that both curves had increased significantly in 3 months time. We approached today's appointment with trepidation because we feared his curves would be even greater. In recent months we have researched several options for treating this type of problem, all of which are either quite invasive (surgery) or very restricting for Brady (casting).

Brady had both standing and laying down XRAYs. By comparing the two, the doctor was able to assess if the curves were flexible or fixed. A fixed curve would be very similar in both a standing and laying XRAY. A flexible curve shows improvement when you lay down.

I didn't realize this was even possible, although Matt and I have been asking God to do this for our Brady for a while...Brady's scoliosis has actually DECREASED! His previous scan went from 15 degrees to 5!!! There is a margin of error with these XRAYs, but the doctor assured us that the improvement shown is outside of the margin of error, meaning that Brady's spine actually straightened out a little bit in the last month or so. His kyphosis curve went from around 47 degrees to 44. With the margin of error, this means that this curve pretty much stayed the same!

Another great piece of news is that his laying down XRAYs show that his curve is pretty flexible--the curve improved by about 20 degrees. A flexible spine is still able to be molded and changed. Of course the doctor told us that we are in no way out of the woods. We still need to follow up on this quite frequently and Brady is at risk for significant increases in either curve, especially during times of growth spurts. It is likely that some form of intense treatment or surgery could be in his future. Typically, growth slows down a lot by age 4 and 5, and then increases during puberty.

We are totally overjoyed by today's news. Remember what I was saying about God yesterday? Nothing, absolutely nothing, is beyond His reach. He can move the mountains, why did I ever doubt that He could bend my little Brady's spine back ever-so-slightly in the right direction and give us so much hope for his future!?!?!

Thank you for your prayers friends! I read about many cancer families who worry that after their child is done with treatment that people will stop praying. I worry about this too, but am constantly reassured by your comments and emails that we aren't walking along, even though our battles seem to be easier:) To God be the glory...

An Amazing Response

So it was just last week I shared with you all about Brady's disappointing meeting with the Orthopedic Surgeon. You remember, "Sorry, there is nothing we can do right now. Let's wait and see, come back in 6 months. Remember, you are going to notice his spine changing more, but don't panic, just come back in 6 months."

To say that this didn't sit well with Matt and I is a huge understatement. If there is one lesson about having health issues that I hope people remember from Brady's story it is this: Always rethink what you are told by doctors. Most of the time they are right about things, but some of the time they don't know it all. It is okay to question authority...it is okay to seek out a 2nd opinion...take advantage of the internet and read everything you can. We are continually amazed by the information out there waiting to be found.

Matt has been reading many, many studies about scoliosis and kyphosis. We are still finding no studies about kids like Brady, there just aren't any out there. So, we have focused on studies dealing with children who have structural scoliosis, which means it is not a birth defect---he is developing this condition because the surgery caused instability. There is even less info out there about pediatric kyphosis. Matt decided to email a couple of experts including one chiropractor and two PTs, all from different parts of the country. He had read some promising studies about bracing and casting. We immediately got responses from all of them, two of them even calling us on the phone.

One wonderfully kind and approachable chiropractor from Massachusetts called us last night and told us that he wanted to help. Although he said that Brady could not be a candidate for his specific type of therapy, he wanted to try and help us find someone else who could give us answers. He contacted two doctors, one in Arizona and one in Germany, both considered leaders in the field of pediatric scoliosis. Their names are all over the research and are certainly considered cutting edge. He promised me last night that he would contact them and get back to us in a few days or so. Well, he called us at home again tonight. The doctor in Germany had never worked with a child like Brady, his only idea was some technique that is only used in Europe. The expert in Arizona recommended a casting technique. Basically, under anesthesia the doctor's manipulate the spine into a better position, and then cast it into that position. Then the casts a changed every 3-4 months to accommodate growing. Again, this process has shown promise with scoliosis, and not specifically the degree of instability Brady has.

Now here is the kicker...there are a handful of doctors that do this in United States. One of them being....the Orthopedic Doctor we have been seeing!!!! I have NO idea why this option was not even discussed last week. We weren't aware of it at that point, and now feel like we have literally gone in a circle this week only to lead us back to where we started. The wonderful doctor in Mass. is going to continue checking into a few things for us, including putting us in touch with pioneer of this casting technique, the woman who trained our doctor in Rochester.

Here is where we are: We have an appointment set up for March 2nd to see the OTHER orthopedic doctor within the practice in Rochester. He works very closely with the doctor we have been seeing, and he also does the casting procedure. My pediatrician suggested we try him as he is very approachable, friendly, and positive. We are trying really hard to get into this appointment sooner as 1 1/2 months seems way too long when we are talking about Brady's spine.

We really need your prayers! We feel like we are out on a limb again, snubbing our nose at the advice we have been giving. However God gave us this boy and we are going to do everything, absolutely everything, to make sure he gets whatever help he needs to live his best life. Please join us in praying:

That God will lead us to just the right person that will have an idea for how best to treat Brady.
That whatever intervention we try will be successful and as minimally invasive as possible.
That precious Brady will not suffer during this process and that he will continue to thrive!
That Matt and I will stay strong physically, spiritually, and emotionally as we continue to advocate and research on behalf of Brady.
That our doctors here at home will keep an open mind and not be too entirely offended that we have done all of this behind their backs (lots of prayer here ;)

Oh, and one last day to email me if you want to be included in the January 21st project. Anything you want to share would be great!

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's...it 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 out...here in my little free-therapy-zone! I'm really down, I'm worried, I'm discouraged, but my faith isn't lost;)