Immeasurably More

Tuesday we flew on faith. Friday we returned home with a testimony to Gods faithfulness. 

We arrived at the children's hospital in Salt Lake City on Wednesday. After getting the final details of her MRI worked out, we got her checked in for the procedure. Her slot was later in the day, and despite not having had her normal feedings she got through the waiting process like a trooper! One bonus about being at this hospital was a surgery waiting area with kids toys and games in abundance! 

After they got Meghan off to sleep, we got to met the surgeon who has been following her X-rays for 2 years now. He reviewed her previous images with us and explained her specific deformities in detail. The biggest concern was the stability of her neck at the level of C1 and C2 (the top of the spine that articulates with the skull base). Her bones did not form completely in that area, and on the X-Ray appear as if they are moving more than they should- the danger being that she could become paralyzed with a fall or other injury that might only cause someone with normal anatomy a good case of whiplash. He explained that often when these bones aren't formed, the ligaments that hold them together never form. He measured and discussed the potential need for surgery, definitely by the age of 4. At this point I am hanging on every word, trying to absorb all the details, my stomach churning at what he described as "lack of structural integrity". We then met the orthotist that would fit Meghan for the cervical collar to protect her in the meantime. After getting the most important set of images, the views of her spinal cord with her neck flexed and extended, he walked us down to MRI and we were able to look on as Meg was being scanned. His next words?

"We're good"- I traveled almost 2,000 miles to hear those words.

At this point I can no longer see through tears of joy, and RELIEF! If I wouldn't have knocked over the anesthesiologist in the process, I might have hugged the surgeon. The orthotist who was standing by to make a cast of her neck shook my hand, and headed off. I am still in shock!

Despite her crazy anatomy, in both flexion and extension her cord was not compromised. Although we can't see it, the assumption is that there is cartilage or a ligament present that is giving her the necessary stability. The scoliosis caused by her hemivertebrae is still present and will be monitored, but he said that after a few more sets of X-rays, if she makes it to age 4 without showing more signs of instability (there is increased risk with growth), then she will likely not need surgery for the instability itself. 

We came prepared for the worst, and left with better news than we could have hoped. I am so thankful that among many challenges ahead for Meghan, this may not have to be one of them! What we had been so worried about for so long was taken and quieted in a way that could have only come from God. It's so like my nature to worry, and fret, and try and control the things I am afraid of. Sometimes our worry is warranted, and we have to rely on our belief in the sovereignty of God, but what a sweet reminder that so often my worry is wasted energy. Radiologists, orthopedists, and neurosurgeons so convinced of her instability, and an outcome that was so much more than we could have hoped for. Immeasurably more. It's a reminder of His faithfulness, and His hand on her little life. He formed her, He knit her together, and it's His name we praise.

"Now to him who is able to do 

immeasurably more

 than all we ask or imagine, 

according to his power that is at work within us" 

Ephesians 3:20

Flying on Faith

I am writing to you from somewhere above the Midwest! We didn't expect to be traveling so soon, but after our neurosurgeon here discussed Meghan's case with the surgeon in Salt Lake City, it was decided that the best thing for us to do would be to bring Meghan out to the hospital in Utah for further imaging and to see the neurosurgeon there in person. We are also going to see an orthotist who will make Meghan a custom cervical collar which she will wear for protection until her surgery. Part of this visit will also be to determine if her bones are ready to accept the hardware, and to determine how soon she will need the surgery. Although the timing is a little crazy, we are grateful to have found a skilled surgeon who is knowledgeable about Meghan's specific deformity and has been faithfully reviewing her imaging for 2 years without ever having seen her in person. 

I almost have to laugh at the timing of everything. I have my last chemo, and have a small window of time that I was able to travel before I start radiation. The deeper my faith becomes, the more I no longer believe in coincidence. I am so thankful for a God who loves us so much that He perfectly orchestrates the events of our lives. I could certainly be temped to complain- cancer treatment, a child with needs so complicated that we have to travel across the United States to find a surgeon who will take her on....but I am called to give thanks to God in every circumstance, and my thankfulness to still be able to care for Meghan, to be healthy enough to travel with her, for doctors who are dedicated to the smallest of miracles, and for His financial provision over this trip continually brings my perspective back to a place of peace. We are flying on faith, and there's no better way to travel:)

If you are praying for Meghan, please pray for continued provision over our trip, a successful and safe MRI, and wisdom for her surgeon!

16  I will lead blind Israel down a new path,
    guiding them along an unfamiliar way.
I will brighten the darkness before them
    and smooth out the road ahead of them.
Yes, I will indeed do these things;
    I will not forsake them.

Isaiah 42:16

Ringing the BELL!!!!

For everyone who was with me in spirit, here is a short clip of the bell ringing at the end of my last chemo! It may seem like a trivial thing, but believe me, it is symbolic of making it to the end of a part of this journey that I am very glad to have behind me! I would not have been standing there without all the love, support and prayers we have had from everyone. And Jess, sorry, but I have to call you out on this one. You have been there from the beginning, and have never left my side. You were my "person" through ALL of this, and are a beautiful example of true friendship. Thank you for being so present, and walking right beside me....

And to my husband, who never complained about taking care of the kids, the house, and everything else so that I could rest, and who still makes me feel beautiful in spite of how different I look, you are a testimony to commitment and love, and the meaning of "in sickness and in health". You are my earthly rock, and I love you.

And to my kiddos, who bring me so much joy in the middle of all of this. Addie said yesterday "whoa mom! You shaved your eyebrows!" Well, not really kid. She also told me later that if you fart in someone's face their eyes will turn pink. Good thing this is my last treatment.

The sweetest sound! Onward!

Hallelujah!

Praise God in his holy house of worship,

    praise him under the open skies;

Praise him for his acts of power,

    praise him for his magnificent greatness;

Praise with a blast on the trumpet,

    praise by strumming soft strings;

Praise him with castanets and dance,

    praise him with banjo and flute;

Praise him with cymbals and a big bass drum,

    praise him with fiddles and mandolin.

Let every living, breathing creature praise God!

    Hallelujah!

Psalm 150

Brave

The summer of chemo is coming to a close!! Tomorrow is my LAST chemotherapy treatment, and saying it's a relief is an understatement. It's been a challenge to write through this process for some reason- I have started blogs and left them unfinished. The emotional ups and downs of coping are very real. Cancer affects every single aspect of your life, and redefines how you view so many things...but many of them one hundred percent for the better. Make no mistake. This experience has changed me, and it's not even close to being "over". After chemo, I get a little reprieve and I start radiation on October 6th. Because my cancer was on the left side, the radiation will affect my heart and lungs. For this reason, I am going to have a newer type of radiation which is cardiac sparing. They are finding that as more and more women become long term survivors of this disease, they remain cancer free, but suffer from heart failure, and effects of scar tissue on valves and lung tissue. We are really blessed to have this available to us. It unfortunately means Monday through Friday trips to main campus every day for 6 weeks, but the inconvenience is worth it to try and prevent as many long term side effects as possible. I will also continue to have the targeted therapy trial drug infused every three weeks for a year, but at least the really hard stuff will be behind us by Thanksgiving:)

Incidentally, September is Hydrocephalus Awareness month, and I figure we are way overdue for a Meghan update! We have enjoyed a great summer with her. We have done NORMAL. We have done playtime, and splash pads, and playgrounds, and thanks to some new equipment that was loaned to us, Meg has gotten to have some great experiences. She has continued to have all her therapies, and specialist follow ups, and until last week, things were mostly status quo. Meg has X Rays taken of her spine every 6 months to assess both the curve in her upper back, and the instability in the bones of her cervical spine (neck). We knew she would definitely need surgery at some point, and have been communicating with a neurosurgeon in Utah that specializes in her type of condition (for anyone who is new to Meg's story you can read about Klippel Feil Syndrome HERE). I got a call from her surgeon on Friday who said that he thinks her most recent films show that her instability is getting worse. She was already scheduled for an MRI of her brain and spine next week, so were are trying to get additional images added on as a starting point. If the MRI shows the same instability, we will get a CT scan to look at her bones to assess their maturity. If they are ready for hardware, we may be traveling to Utah sooner than we thought. In the meantime, I am alternately afraid for her to fall since she is becoming so much more mobile (she is cruising like crazy!), but still cannot stand on her own. Falling for her could be devastating if she fell in such a way that her neck moved enough to damage the spinal cord, so we continue to pray that she will be protected from injury until we are able to get her to surgery. While she is sedated for her MRI, she is also going to have some minor ENT surgery, a g tube change, and an ultrasound of her kidneys and bladder. She may have had more nerve damage than we thought originally from the tethered cord, so the ultrasound will help us determine that (and we get to add another specialist to her list...). Nothing like making the most out of a day of sedation!

So, we continue marching ahead. We have been blessed with some incredible people helping us through this season of our lives, and God has shown Himself faithful to our family over, and over, and over. Lavishing love, infusing with strength, and enabling a type of bravery I could have never known first hand without this specific experience. Anytime I feel like I am struggling, I look to this perfect little gift He gave me to remind me of what it looks like to be brave. To me, it looks a lot like Joy. The kind that can only come from Him.

"No trial has come to you but what is human. God is faithful and will not let you be tried beyond your strength" 1 Corinthians 10:13...."I can do ALL THINGS through Christ who strengthens me." Philippians 4:13

He makes me Brave.


A little peek at the rest of our summer! During my good weeks, we made the most of LIFE!!

Testing the waters...

Playing at the Inclusive Playground- awesome!

Splash pad!

First Pony Ride:)

And this happened. I still cannot believe it!!

And yeah, we met Mandisa! So cool!