One Year Ago Today…

Thomas was in so much pain, he couldn’t get out of bed. What we thought was a sore muscle, ended up being a visit to the emergency room that turned our lives upside down. We didn’t know it, but we were in for the ride of our lives.

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I cannot believe it has been a year. We have been through so much over the past year. I am grateful for the past year. We have seen our lowest lows and some of our highest highs through it all. It was the wildest roller coaster I have ever ridden for sure. Through it all God showed Himself. God comforted. God healed. God Provided.

My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing.

James 1:2-4

On October 7, 2013, I took Thomas to the Scottish Rite Emergency Room because he was in so much pain he couldn’t get out of bed on his own. He was admitted because an x-ray revealed an unidentified mass on his spine. After many blood tests, scans, and a biopsy, he was diagnosed with Spinal Osteomyelitis. He began IV antibiotic treatment in the hospital and after 12 days went home with a back brace and oral antibiotics.

A couple of months later, a follow-up MRI revealed that the original diagnosis, Spinal Osteomyelitis, was wrong. The mass had spread quickly. The doctors suspected it may be something called Langerhan’s Cell Histiocytosis(LCH) that would require chemo for treatment. Thomas began seeing an oncologist at the Children’s Healthcare of Atlanta Aflac Cancer Center.

Be anxious for nothing, but in everything by prayer and supplication, with Thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Philippians 4:6-7

We met with the oncologist to confirm his thoughts for a diagnosis with additional tests. He felt confident that it was LCH, but wanted to be absolutely sure before beginning treatment, so Thomas underwent more test testing including blood work and full body x-rays, about 20 pictures in all! The doctor was checking his skeletal system for more abnormal growths to determine if another biopsy was needed.  The plan at this point was for the neurosurgeon to surgically remove a portion of the mass from his spine. The mass was now affecting 11 of Thomas’ vertebrae (L3-T5). Two months ago, it was on two, possibly three vertebrae (T7-T9).

Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you. I will uphold you with My righteous right hand.

Isaiah 41:10

The second needle biopsy did not give the doctors any answers. The initial and final findings from the pathology report were normal, the cultures were growing nothing, the mass was just as much a mystery as it was the day Thomas was admitted to the hospital back in October.

Many are the afflictions of the righteous, but the Lord delivers him out of them all.

Psalm 34:19

Thomas had a PET scan to check for any signs of malignant cancer. The radiologist was able to confirm that the mass had not spread further than his spine. It is most pronounced between T6 and T9 vertebrae, spanning from L3 to T5 vertebrae.

Thomas had a Thoracic Open Biopsy/Lumbar Laminectomy.  The biopsy went well with no complications and he only spent a couple of days in the hospital. The neurosurgeon said the preliminary findings were consistent with Eosinophilic Granuloma, which is a form of Lagerhans Cell Histiocytosis. However, the pathology team was not able to identify the cause of the mass. They sent the biopsy sample/reports to Egleston and Emery in hopes of someone else finding a diagnosis. There were several things on the table, but none were confirmed or ruled-out through pathology. The oncologist said he has not seen a case like Thomas’ in over 15 years!

…rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.

Romans 12:12

In February 2014, Thomas was finally diagnosed with Chronic Recurrent Multifocal Osteomyelitis(CRMO), a autoinflammatory disorder affecting the bone marrow in his vertebrae. It is extremely rare (he was the first patient with CRMO that the neurosurgeon and oncologist had ever had). According to Wikipedia, it is 1:1 mil, even more so for boys (1:6 mil) and even more rare to have it on the spine.

Anytime you have something affecting the spine, there is a risk of damage to the spinal cord, so treatment is an urgent concern. Because he was not in pain and still able to get around, it gave us more time to treat the inflammation without having to remove the bone surgically. There were many different treatments presented by our team of doctors, which at that point included an oncologist, neurosurgeon, orthopedic surgeon, and infectious disease doctor. Because it in a rare diagnosis and a fairly new one, the treatment decision was a difficult process. Not much research has been done on the disease, so there are still many different trial options.

The CRMO crushed/fractured 5 of his thoracic vertebrae causing kyphosis, which is an over-curvature of the thoracic spine. The brace he wore helped keep his spinal column stable and help avoid further collapse of the vertebrae.

The neurosurgeon said that Thomas “should be” in severe pain. He said if you showed a doctor Thomas’ scans and reports and then introduced Thomas to them, they would not believe it was the same child. Thomas has 5 fractured vertebrae and severe inflammation and has little to no pain. There is no medical explanation for why he is feeling so well…that is how my God works!

Thomas began the first round of treatment for the inflammation(CRMO). He was taking a hefty dose of Naproxen and Ranitidine.

Giving thanks always for all things to God the Father in the name of our Lord Jesus Christ

Ephesians 5:20

Thomas began seeing a rheumatologist.  She confirmed the diagnosis and said it is a more aggressive case than normal based on the growth shown in his previous scans.  The next level of treatment includes 3 days/once a month of infusions of Pamidronate which would require a hospital stay each time.

Typically, they would monitor the effectiveness of treatment with pain levels, but since Thomas is pain-free, PRAISE GOD, he will need regular scans. We were finally on the right path with this diagnosis.

Thomas had an MRI to check the inflammation in his spine. His spine and bone structure have not improved, however the inflammation was gone!

There is surely a future hope for you, and your hope will not be cut off.

Proverbs 23:18

001-002Where are we today?

Thomas’ CRMO is currently in remission! He has regular check-ups with the rheumatologist and neurosurgeon. He has regular blood work, x-rays, and scans to monitor the CRMO because it can cause debilitating damage to the bone very quickly, as we have seen with his spine. The inflammation is known to return anywhere in the body without warning.

So far Thomas’ bone health blood screens looks good, however, he does have a Vitamin D deficiency. He now only takes Calcium and Vitamin D supplements.

He does have significant damage to his spine that will eventually need surgery to straighten the spine, but the neurosurgeon wants to put that surgery off as long as possible because he is so young and his spine is stable for now.

He is no longer has any pain at all and is on normal activities, only required to avoid full-contact sports.

I am so grateful to God for the past year. We have been through so much and have all grown so much. Thomas has been an amazing example of faith to everyone around him, never ceasing to believe that God would heal him. His faith has been an encouragement to everyone.

Yet in all these things we are more than conquerors through Him who loved us. For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Romans 8:37-39

To all of you who helped us get through this past year, I cannot thank you enough for the love and support you have given our family. Whether it was financial help, moral support, providing food, or prayer support, Christ’s love shines through your hearts and for that we are forever grateful.

Grace to you and peace from God our Father and the Lord Jesus Christ. I thank my God, making mention of you always in my prayers, hearing of your love and faith which you have towards the Lord Jesus and all the saints, that the sharing of your faith may become effective by the acknowledgement of every good thing which is in you in Christ Jesus.

Philemon v.3-6

 

 

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About Heidi S.

I spend my days growing and learning with my boys and my nights as a freelance writer and editor. I am an all-around frugal mom, always looking for ways to be a better steward with the things God has blessed us with. I am married to my high school sweetheart and have three boys - ages 14, 11, and 9. Our homeschool style is very eclectic...Charlotte Mason to classical to traditional, you will find a little bit of everything on our bookshelves.
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