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Jan 22, 2019 Latest post:
Jan 12, 2020
Thrown into the Storm
Sometimes, we make choices that create a storm around us. Other times, we find ourselves in a storm due to the choices of others. And then, there are times we are just walking along and a storm sweeps us away with no warning and no fault of our own. It is in these storms that we feel the pressure of change happening, even if we don't want it to .
"For this reason I bow my knees before the Father...that according to the riches of His glory, He may grant you to be strengthened with power through His spirit in your inner being." Ephesians 3:14, 16
Casey- Colton's dad Teresa- stepmom Emmie Claire- 2 year old daughter with Tuberous Sclerosis , half sister
Amanda- Colton's mom Keith - stepdad Carson- brother Ryleigh- step-sister
In order to tell any story, we always need to start with the beginning.
Friday, January 11, 2019
This day started out as a normal day. Colton, our 15 year old son, had been complaining of a nagging knee pain for a week or two that seemed to be getting worse. He remembered losing his footing on uneven ground recently, and he thought he may have pulled a ligament or tendon. Casey took him down the street to a local walk-in medical office after school , since it was also Emmie Claire's birthday and family was enroute. The P.A. on duty studied his knee and, with no visible concerns, decided to take an x-ray anyway. (Thank the Lord!) The results should have been quick, but a concerning area was seen and 3 radiologists were asked to take a look. After an hour, the phone call came and advised that Colton be taken to an ER. Off to Dallas Children's they went. Can you feel the storm winds beginning to swirl?
Obviously with any busy ER, initial intake and protocol took several hours and Colton could not be admitted due to lack of rooms available. He and Casey were set up in a private ER room to wait while the X-Rays were reviewed and by 3 AM , Casey and I were on the phone discussing the doctor's plan to order an MRI.
Saturday, January 12, 2019
I got to the hospital in the early morning hours as Colton was taken back for his MRI. We sat and waited, prayed and waited...and waited some more. Two hours later we were given the news by the ER doctor that we dreaded... belief it is bone cancer, Osteosarcoma to be precise. We were told an oncologist would be meeting with us shortly.
Osteosarcoma is a rare (0.006 % of population, 4% of child cancers), aggressive bone cancer usually found in kids between 11-18 on the growth plates or large bones. In simple terms, kid bones naturally dispense "bad cells" as they grow and "normal bodies" are able to naturally dispose of those cells. In rare cases, like Colton, the body does not naturally dispose of these cells, they form a group and attack. We were assured that there is nothing we, or Colton, did to bring this on or make it worse. They referred to it as "bad luck", but we know God must have a plan. I can honestly say that I have had brief human moments of questioning "why?" From Keith's son, Tyler, passing away in 2017 from complications with Cystic Fibrosis, and Ryleigh currently living with CF and CF related diabetes, to Casey and Teresa's daughter, Emmie Claire, being diagnosed in womb with Tuberous Sclerosis, a rare genetic disorder that causes benign tumors in major organs, we have had our share of medical issues in kids. It is in the midst of all of this, that I can't help but think, "Haven't we been chiseled and refined enough in this area, Lord?" However, my doubts and fears need to be cast aside and laid at the feet of Jesus. Easier said than done.
The oncologist on call that day came in and sat down to discuss his findings and the next steps. We were told initially by the ER doctor there was still a small chance that the tumor was benign and were holding on (tightly) to that hope. However, when the oncologist began explaining what to expect during chemo treatment and that possible amputation (part or all) of the leg might be involved (nearly threw up here), we knew where we stood.
The immediate next step was to have a CT of Colton's chest and lung to see if tumors were present (God, please have mercy!). He was taken for the CT later Saturday afternoon and we received results an hour later. PRAISE GOD, initial scans show no sign of tumors in the chest, so far.
We were told a room was now available and to prepare to move. However, the oncologist let us know that the team would not be meeting with Colton until Tuesday or Wednesday (What? Kidding me? Didn't they know how critical this was? How could anyone else be more important?)
Because of the clear chest scan, the oncologist felt comfortable discharging us to allow Colton to rest at home for a couple of days until scheduling called us to make the appointment.
Houston, we have a problem!
Sunday, January 13, 2019
We were left to wait...did I mention that Casey, Teresa, Keith, and I are not very good at waiting?
After much discussion, we were confident that we wanted to pursue treatment at Texas Children's Hospital in Houston.
-The pediatric oncology dept. is rated #6 in the US. The next closest ranking in the top 5 is Memphis, TN.
- Emmie Claire is treated by the #1 pediatric neurosurgeon at the same hospital and all insurance/comfort/trust is established.
Dallas Children's Hospital did a fine job handling his MRI and chest CT and the ER doctor handled delivering the hard news to us with care and compassion. For that, we are grateful.
By 5:45PM, Casey, Colton, and I were packed and in the car heading to Houston.
It was during this four hour car ride that we saw God begin to move around us. Teresa made contact with their neurosurgeon to see if he had any connections with pediatric oncology and my mom made contact with a colleague who trained at MD Anderson with the current chief of pediatric oncology at Texas Children's . Both said they would make contact with the department and let them know we were coming. But, of course, we couldn't help but wonder:
Would contact be made?
Would Colton be accepted without a transfer and get an appointment?
Would they tell us that he couldn't get an appointment until next week?
I mean, they are the best pediatric oncology department in the Southwest. Did we think they would just happen to have an appointment open on a Monday? Tuesday? Any day this week? Crazy!
We arrived in town at midnight to a home owned by Casey's extended family. (The owner spends a lot of time at her farm and the house in town was offered to us, a huge blessing!) It was late and we knew we had to be up early and get there when offices opened, so we brought in what we needed and hit the sack. I think it is safe to say that all 3 of us didn't get restful sleep that night.
Monday, January 14, 2019
We got up early, got ready, prayed, and headed out to the hospital. I already had it in my mind that I was perfectly fine sitting there in the waiting room and staring at the scheduling staff until they let us in. Ha! We had nowhere else to be!
The elevator opened to the floor and here was the moment we had been anticipating. I really wish that I had a camera recording the conversation I had with the receptionist upon arrival! If you would have seen her face, you would have laughed like I did.
Me: Hi there! We just drove from Dallas Children's with a diagnosis of osteosarcoma and wanted to seek treatment here, please.
Receptionist: OK, what time is your appointment?
Me: Oh, we don't have an appointment.
Receptionist: Well, who is your dr?
Me: We don't have a dr here. We were hoping to get one today.
Can you visualize her facial expression? Hilarious! Of course, she didn't say what she was thinking, she just kept smiling and excused herself for a moment. She called the office manager and head of scheduling to see how to proceed.
The office manager (Deanna)came up to the front and asked us a few questions, including his name. When I said "Colton Christian", she looked at us and said, "Oh yes, we gave him an appointment tomorrow at 9:15AM." I literally think I just stared at her for 30 seconds straight! I was about to profusely thank her over and over again, but first heard Casey say these words... "We have nowhere else to be (and need to use the free WiFi) and plan to hang out here for awhile. Is there any way someone may be able to see us today if we stay around?" Did I mention that we were not great at waiting?
Deanna excused herself and returned a few minutes later with this news, "Dr Rao will see you at 9:30AM." Unbelievable, thank you Lord!
The next hour went quickly and we were soon visiting with the pediatric oncologist assigned to Colton's case. She explained to us what she saw on his scans and concurred that osteosarcoma was most likely the diagnosis. She visited with us for a good bit and allowed us to ask all of our questions. She was knowledgeable, easy-going, and we felt confident that Colton was in good hands. After about 40 minutes, Dr. R said that she text the surgeon who would be operating on Colton in about 10 weeks and that she also agreed to see him today. What????? Are you kidding me? There are 2 surgeons down there that can perform his particular surgery, and after one text she has agreed to work us into her schedule? I think the Lord was just showing off now. LOL A few more calls and connections amazed us that day, but all was clear...God had Colton in His hand.