From Routine to Radiology

On November 5th Skyler had his 9 month well child check-up. Time for measurements, vaccines, and a milestone check-in.

Except it quickly turned from a typical check-up into something more. His new (amazing) pediatrician found a small lump on the left side of his neck. She measured it at approx. 3cm by 3 cm, and referred us to an ultrasound for further information. Best case scenario, he had an enlarged lymph node or maybe a cyst that would need to be removed.

One week later, on November 12th, we were at a Nationwide Children's Hospital location in Deleware, Ohio. Justin had the day off, so the three of us did some shopping for the house, went to the appointment and had lunch together. We weren't super concerned... I mean, nothing was going to be seriously wrong with OUR child. 

Within a couple of hours after the ultrasound, our doctor was on the phone with us. We were in the parking lot of Graeter's, about to get milkshakes when she told us... Skyler did not have an inflamed lymph node. He did not have a cyst. He had a solid mass in his neck. A solid mass that was definitely not supposed to be there, and that we needed to figure out immediately. Within the next 20 minutes we were scheduled for an emergency CT scan at 9:00 AM the following morning at the main Children's Hospital campus in Columbus. Cue the tears and prayers... the day had just taken a turn and we were uncertain what that meant for Skyler.

I received another call, later that evening, with more information from his doctor. Her and her colleagues at Children's had been working together to review Skyler's ultrasound.... her colleagues in the Oncology Department.

Oncology.

Cancer. 

Our baby was being discussed by doctors that treat cancer.

We were instructed to head directly to the Oncology Department on the 11th floor after Skyler's CT scan. We didn't have an appointment, but we would be seen regardless. 

Oncology.

No appointment necessary. 

Justin's parents came over Tuesday morning to get the big kids out of bed and off to school. Justin and I took Skyler to Columbus for the CT scan; Justin's parents joining us there later. Skyler would need an IV with dye for the contrast scan. 

The scan's job was to tell us how big this mass was, and if it was tangled or connected to anything else; mainly his nerves or spine. We prayed big prayers that the ultrasound was wrong, or that - if it wasn't - this mass would be self-contained and not trying to hurt him any further.

We were able to stay with him the entire time. Aside from some fussing during the IV process, he was completely calm. He laid quietly during the scan, which lasted a few minutes, and completely impressed all of the staff tending to him. 

Next up - the 11th floor. Oncology. 

We were seen within minutes of arriving. 

His next doctor and dedicated nurse arrived after his vitals were taken, and had already reviewed his CT results. The mass was still there, but it was self-contained. It was not tangled in his nerves. It was not touching his spine. It was a solid, stand-alone mass just slightly larger than our pediatrician estimated. This was good news. (What a relative term that has become these days.) Though, his diagnosis was still unclear. He could have 1 of 3 things at this point. 

1. Ganglion tumor. (non-cancerous)

2. Neuroblastoma (cancer)

3. Sarcoma (cancer)

What a day. The night was spent mostly crying and fervently praying the most desperate prayers we have prayed since Justin was in the hospital in 2014. Our family and friends rallied around us, physically and emotionally. We weren't alone. God was going before us and our family was walking next to us.

We had our marching orders... 

Next up: Radiology.

Skyler needed a MIBG scan.

Wednesday morning - back to Children's Hospital so that Skyler could have a radiation injection. The radiation in the shot would migrate to the bad cells in his body so that we could determine where they were. (I thought it would only stick to cancerous cells, but that was not the case. All bad cells in general.) Those spots would "glow" on his scan the next day.

A wonderful thing about Children's Hospitals in general, is that everything is designed with kids in mind, and awesome people come visit them. In Seattle - the Seahawks. In Columbus - the Bluejackets Hockey team. We were lucky enough to be there for a visit.

We updated our families and sent out prayer request updates. Coast to coast this child and our family have been covered in prayer, and we could not be more thankful for that. We cried every time someone prayed for us, over us, and with us. Your love has crossed the phone lines and miles between, be it another city or another state. We have appreciated each and every one of you.

Thursday, November 15th. Day 4 at Children's Hospital. Back to radiology.

8:00 AM - No more nursing.

10:00 AM - No more water.

11:30 AM - Check-in 

1:00 PM - Scan scheduled

By noon this boy was hungry. We're talking, throwing toys on the floor Hangry. Justin had to hold him the entire time, because he really wanted me to feed him. Thankfully they were able to get him in a little early, and at 12:30 we were rolling back to the scan room.

It was so hard to leave our littlest in the hands of strangers. To watch him be sedated so that he would hold still for the clearest pictures possible. So hard knowing that we would soon find out whether or not our baby had a bigger problem going on. 

We were away from our guy for about an hour. He was crying as they were wheeling him back to the room, but stopped as they rounded the corner. Then he heard me and melted down. I was able to feed him soon and he was once again our happy boy! After verifying his urine test was run while he was away, we were released to go home. 

We thought for sure we wouldn't hear from our doctor until Friday, so we proceeded to make phone calls and send text updates. 

Just after 6:00 PM Thursday evening, our Oncology doctor called. She had reviewed the scan. She had the results.

Skyler was glowing... in 1 spot; the mass in his neck. 1 spot. There was nothing else. She said this is the best we could have hoped for today. That this is good news. This was another answered prayer! 

Our doctor's choice surgeon was not scheduled to return to work until this previous Monday and our doctor already had plans to be reviewing Skyler's diagnostics with her at that time. However, we were officially not looking at an emergency surgery situation! Skyler still needed prompt surgery, but not before Thanksgiving. 

But...

Skyler's prognosis: Full Recovery.
Answered prayer.

We have now heard back from our medical team in Oncology... Skyler's urine screening, to detect for a neuroblastoma, came back without indicators.
Negative.
Answered prayer.
At this point, it doesn't completely rule it out, but it's great news!

We have a consult with our surgeon on December 3rd, and Skyler will be having surgery on December 10th. 

All of our prayers have come to this... Skyler still needs surgery. The mass, tumor, whatever, still needs to come out. However, every test after the ultrasound has come back with the best case scenario. Our boy has the best of the worst. Our boy is being looked after, loved on and protected. He is going to be okay. 

He is going to be okay. 

He is going to be okay.

Each day we have an answered prayer.

This week we are relishing in our temporary relief that this news has brought us. We are saying prayers of praise for Skyler's test results, for his pediatrician, for Nationwide Children's and the staff we have on our team, for God watching over our baby boy. This week we are hugging and kissing and holding our little monster, and we are thanking God for giving him to us over and over and over again.

 

For those that just found out about the situation... I humbly ask for your prayers, too. Please pray for our boy, Justin and myself, our big kids, our extended family near and far, and our medical team. Give praise to God for protecting our boy and bringing us to a place where this was promptly discovered and will be treated by the best of the best.

Thank you to everyone that has lifted us up, checked on us, and offered to help. Big shout-out to Justin's parents who have dropped everything to help with the big kids, hang-out on a no school day, and be with us at the hospital. My parents and all of our siblings that have been in constant contact with us, cried with us, and been a huge support as the situation has unfolded. Our family and friends... your words of encouragement help. We are beyond blessed by having each of you in our lives and the lives of these kiddos we've been entrusted with. Thankful doesn't begin to express our gratitude. 

At this time, we will begin updating publicly as things progress in December, so that no one is receiving outdated information secondhand. Thank you all for caring so much that you are establishing a prayer and support network for us! We also ask for your understanding, as we have family that we are in close contact with, if we do not respond to texts/calls immediately. We know we are lucky to have such awesome people in our lives, and just ask for your prayers over our boy and family. Thank you all so much!