Preston’s Story

Site created on November 14, 2018

                                                                                                                                           Psalm 103: 1-5

1 Praise the Lord, my soul; all my inmost being, praise his holy name. 2 Praise the Lord, my soul, and forget not all his benefits— 3 who forgives all your sins and heals all your diseases, 4 who redeems your life from the pit and crowns you with love and compassion, 5 who satisfies your desires with good things so that your youth is renewed like the eagle’s.

We are the McCoy Family; Eric, Margo, Isabel and Preston. We have been married since 2003 and have two wonderful children. Isabel is 7 and Preston is 4. We moved from Portland, OR to Kansas City in 2014. That in itself was a God thing and a huge step of faith. It has been an amazing time living in the Midwest and the tremendous people we have met. Recently life as we know it changed significantly. This is Preston's story.

On Sunday, September 16th, 2018, Preston McCoy was swinging in our backyard. He inexplicably reached out and grabbed the post of the swing set. This caused him to do a flip off the swing, landing on the left side of his head.  A bump immediately appeared where he fell on his head. We called our doctor to ensure nothing was an issue, at the time there were no additional symptoms. After a couple weeks the bump was still present,  we took him in to our Pediatrician's office. Still nothing abnormal showed and the recommendation was to wait and watch. 

Preston's four year check-up was scheduled for Monday, November 5th  and there was a plan for a second look, as the bump had not gotten better. We had to reschedule our appointment, but there was still a need to evaluate the bump on  Preston's head. We were able to get him in the next day.  Since it had been so long that the bump had remained our doctor felt it was best to get an X-ray. The results of the X-ray provided no results, then came the CT scan. One of our most difficult moments in life to date occurred in a radiology room with two doctors, they had found a tumor.

The location of the tumor was on the outside orbital of the left eye and outer layer of the brain (not touching the brain though). Due to the location of the tumor Preston was admitted to Children's Mercy Hospital in downtown Kansas City to ensure he was a priority for testing, biopsy, and MRI. For the next several agonizing days we went through a roller coaster of emotion, unsure of how the next minutes in life might unfold.  A blessing for Preston, he only had to be away from home for two long and tiring nights. But the days of uncertainty remained.

It got a bit clearer on Tuesday, November 13th, we got confirmation what we were dealing with. The biopsy concluded Langerhans Cell Histiocytosis (LCH).  This was different then what we expected but not necessarily better.  With where the tumor is located Preston is considered high risk. The PET scan was scheduled for the next day that would determine the severity. Here is more information on LCH: 

Langerhans Cell Histiocytosis (LCH) is a rare cancer that begins in LCH cells. LCH cells are a type of dendritic cell which fights infection. Sometimes there are mutations (changes) in LCH cells as they form. About 1 in 200,000 children are diagnosed with LCH. The prognosis is a survival rate about 85% in low risk cases. Survival rate can decrease depending on location of LCH especially if multi-system (multiple organs). The common symptoms and side effects is lesions. This form of cancer has a history of reoccurring.  

Best site to visit for information: 
https://www.cancer.gov/types/langerhans/patient/langerhans-treatment-pdq#link/_1

Wednesday, November 14th was a long, tiring day for the PET scan. Had to be up by 5:30am to eat, then not eating again till 1:30pm is tough for a four year old growing boy. It was complicated further by his increasing dislike for IVs - which most share his disdain.  For a young boy he is very strong and has enormous lungs, but we made it through.  With future treatments, a port will be placed in his upper chest, so we don't have to endure the torture of an IV every time.  Yet with the PET scan done there was still more waiting. Probably the hardest, since this would determine the prognosis. Already considered high risk, if found in other organs would be devastating. 

Fortunately our wait wasn't days, we got the call on November 15th. The results from the PET Scan were good, it was only found in one other place - the 7th vertebrae. Though it is in another location its considered a single system because its bone related. The place it was first found in his head, was determined to be from the skull meaning it originated from the bone. THIS IS A HUGE PRAISE! And a big relief!

Monday, November 19th, met with the medical team. They felt very encouraged and confident about Preston and his treatment. We have two doctors, a nurse practitioner, and someone with  child life services (to help with Preston and some of the scary procedures). The prognosis is good. They anticipate  the treatment will do what it suppose to do with little side affects. This is there expectations but they have communicated its possible it won't go as they anticipate. LCH is very rare with not a lot of data  as already mentioned.  The first six weeks are critical and will dictate prognosis. 

A port was put  in Preston's upper chest on Tuesday, November 27th, to make it easier for him when getting treatment and having blood drawn. That same  day the first treatment was administered. So far Preston is responding well to everything including all medicine - PRAISE GOD! Treatment will be every Monday starting December 3rd.  If Preston's body responds well to the first six weeks of treatment and the scan shows it having an effect on the tumors then treatment will be moved to every three weeks. Full treatment goes for twelve months, even if it goes into remission. This type of cancer has a propensity to reoccur even several times. We fully anticipate God to work many miracles and show up as He does best. 

THIS IS A MIRACLE...
Our biggest hope for anyone visiting this page is that they know the miracle that has already happened. Preston grabbing the post and falling off the swing. Then landing exactly on his head where the tumor was located. Causing the tumor to be exposed so we would get it checked out. This was no accident. God is in control and His grace has given us peace no matter the outcome.

How you can help:
Pray, pray, pray!!!
Pray for healing - God can do anything and already has done a lot
Pray that Preston's body responds well to the treatment especially in the first six weeks
Pray that the side effects are limited and there is no infection from treatment and the port in his chest
Pray that the tumors do not spread but digress 
Pray for peace and strength for Preston that he won't be afraid of the procedures
Pray for Isabel, that her tender heart is comforted during this time and her needs are met
Pray for strength for our family and that we get the rest needed
Pray that we don't allow our fears to overcome us and God's peace will surpass them
Pray that the financial aspects will work themselves out - we have applied for financial assistance please pray it is approved

God has trusted us immensely with this situation and we believe He will give us the strength and peace to endure .  We are incredibly thankful for the army of prayer warriors God has surrounded us with.  The love and support from our family and friends has been a beautiful picture of Gods love. We look forward to what God has in-store for our family and know he is with us every step . Thank you for your love and support!

In His Love,
The McCoy Family;  Preston, Isabel, Margo, and Eric

Due to financial circumstances we've had to set-up a GoFundMe account, if you felt led to help in this way:

https://www.gofundme.com/manage/3yy3z-the-mccoy-family

If you you would like to get notification of updates please register with Caring Bridge. We will be updating this often...

Newest Update

Journal entry by Margo McCoy

Hi Guys,

As we sang the worship song "How Great Is Our God" last Sunday in church, I was thinking how wonderful it was to sing this classic powerful song. Well today we sing it again!

Thank you for prayers today. Preston did amazing, we were at the hospital at 7am and he didn't go under until 10:30. He did an amazing job being content with worship music, playing cards, coloring reading books etc. He didn't ask for food at all. His stomach did get sensitive to the drink he had to have ,so it took longer to consume. We were told he had to finish or we will put a tube in nose to finish it while awake. I simply told Preston this, as he remembers having the tube in his nose last December and he worked hard and his absolute best and got the drink done. I continue to be amazed how much he has grown in this year from 4 to 5 years old and his understanding to all of this. God has given him incredible strength, peace and understanding through all of this. The nurses and staff love when they are assigned to Preston because he is such a delight to care for they say. What a gift ! God continues to give Eric and I amazing wisdom to love him through this as his parents. 

The day was longer than planned because Preston kept waking from the anesthesia, they had to give more a few times. He was back with doctors from 1030-230pm. It was wonderful to see him after that! He did an amazing job. 

This evening, we got the best news! The doctor called and said the scan was clear NO CANCER CELLS.  PRAISE GOD PRAISE GOD PRAISE HIS HOLY NAME! As we heard such words, Eric and I burst into tears of joy. When we told the kids they screamed for joy and just hugged each other. 
What an incredible moment and what a gift today from the Lord.

As we arrived at Children Mercy this morning the Christmas lights were up. I was remembering seeing them up a year ago as we began this journey and here we are a year later, filled with Gods strength and presence from the journey of the year. A year ago I remember us receiving the call confirming it was in fact cancer, we knew that was highly likely but we still prayed for a miracle that it wasn't. I burst into tears then as the confirmation of cancer had become our reality. Now a year later, our son is considered to be in remission as of today and we burst into tears again AMEN!. If someone would have told us this would be in our future, I would not have known how our hearts would handle something so hard. I don't know why God answers prayers in the way he does but we are not called to know why, we are called to trust him to be with us in ALL things. The good, and the hard. What I do know is that his promise of being with us in all things when we SURRENDER it to him, the power in how he works within hard things is beyond our understanding and only through him can we be equipped to endure such things. This is what we have seen him do this year!

Our hearts cannot express the thankfulness we feel in having our son in remission. The thankfulness for the prayer, support in many ways and the way God has been so faithful to our family. He hears our hearts cry out and he is right there. We just have to have palms open to him, we could never do any of this in our own strength. All glory is to HIM  and HIM alone! 

Thank you for the incredible encouraging words. The body of Christ is so beautiful and we have seen this first hand, the way God designed us to be woven together and express his love to one another. 

Next Steps:

*Preston will have his port removed on 12.9
*We will be in post treatment plan for the next year, which will include monthly exams and scans every 3 months. They will monitor him close in the first year, this is highest chance of it coming back.
* We stop chemo and meds. May take 6-12months to clear his body of side effects. We also don't fully know the long term impact of treatment, time will tell and we will take in strides and pray over this.

Please pray for these things and thank you again, from the bottom of our hearts. 
Blessings to you all this season with your families. Time with family is such a gift, enjoy!

In HIS love,
Margo




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