One Of Our Own :(

30 Jan

This a hard blog for me to write, because it absolutely hits very close to home! I am going to share a story of an amazing family facing the most difficult thing that life here on earth can present & I am asking all of you to join our family & theirs, in prayer & support (there will be a link for financial donations if you feel lead to give). This is long, but how do you shorten a challenging life story… I hope you will read, it will change you!

Conner Stell is a 3 year old little boy from Smithfield, NC, that we first met in the first days of Keely’s diagnosis at UNC Children’s Hospital. Once a child is diagnosed with cancer, there is no going home, no passing go, no collecting $200… it is straight to the Pediatric Hemotalogy/Oncology floor to begin a complete worldwind of events. First, major test to get an accurate diagnosis on “type”, then surgery to implant a central line (to make the administration of chemo, giving & getting blood, etc. much easier & convenient), & then the first week of intense chemotherapy. No one can truly imagine how dramatically life changes due to this illness in a matter of minutes! For us, we went from a Sunday morning “sick visit” at our pediatric office, to a rushed ride to Wake Med’s E.R., to being transported to UNC with a confirmed leukemia diagnosis & in for surgery in a grand total of 24 hours. It’s a time when you feel completely isolated & separate from the world. The bond between other families in those first days is one you never forget.

During our first days on the 5th floor, in the room directly beside us was another family, the Stell family. Their son, Conner, was diagnosed 2 days before Keely. He was diagnosed with Acute Myeloid Leukemia subtype monosomy 7 (google it… it will blow your mind) . This is a serious & rare form of leukemia. He needed a bone marrow transplant immediately in order to have any hope of survival. This, however, is like a double edged sword…. in order to survive the bone marrow transplant, a cancer patient most go into remission (the leukemia cells are less than 5% present in the marrow). Which means that the patients body must respond to the chemotherapy. With a rare & aggressive cancer, this isn’t always possible. For those that have never been exposed to cancer & how it operates, I will spare you ALL of the details, but just know that it is an extremely smart & relentless disease. Even once you’ve gone into remission, it takes 5 years of it staying away (once all treatment is complete) to even be in the “safe zone”. To have a “rare” or “high risk” type, makes these odds of, #1- going into remission, & #2- staying there, even more minimal. Conner has both a “rare” AND “high risk” type.

Everything that Conner has been through is quite overwhelming, so I apologize to Karrie & Aaron if I don’t have every detail correct… but here is Conner’s story:

After just the very first few weeks of chemotherapy, Conner was given a second leukemia diagnosis! The chemotherapy does carry a risk of actually inducing another type of cancer… although this is usually in patients receiving treatment for ALL, to develop AML… however in Conner’s case, the treatment for AML gave him ALL. He has BOTH types of leukemia! We share the same primary pediatric hem/onc as Conner, & this woman is EXTREMELY good. Her credentials will make a person feel intimidated in her presence (although her personality will quickly have you laughing!). She has even consulted the best of the best at John’s Hopkins, but no one has any idea how to even designate a course of treatment for Conner’s situation. They have only seen this a handful of times. They did the best they could with the knowledge they have & began to treat Conner with very high doses of some of the most cutting edge chemotherapy. Conner, however, never responded to treatment & never went into remission.

During all of these relentless efforts to get him into remission in order to give him new, healthy bone marrow, so much has taken place in this young boys life. Let me reiterate that I don’t know ALL of the things that have happened… only what Karrie has shared with me upon our shared space in clinic (you can read the full story from beginning to end on Conner’s site listed below). Conner did go into the hospital 3 different times to go ahead & risk doing the bone marrow transplant (taking advantage of at least the small decrease in leukemia cells due to treatment). There is a VERY long process in the weeks impending a transplant… TONS of tests, radiation, scans, etc. You can imagine how perfect & accurate everything must be in order for a person’s body to accept foreign cells. It takes 6 weeks of in-patient procedures to prepare. Each time, Conner was sent home… somewhere along the line, his risk dramatically outweighed his chances. The last time was the hardest blow, during one of his scans, the doctors found a severe fungal infection in one of his lungs. They said that getting rid of it was actually even harder than the cancer. He needed a surgery to remove over half of his infected lung. Another problem, he had too many leukemia cells present to have this major of a surgery… he would die. So, the doctor treated him for weeks on experimental anti-fungal IV treatment in attempts to get control of the infection, but none worked.

I’m not sure of the exact date, but just a couple of weeks ago, the doctors suggested that Conner be taken off of treatment & instead just focus on making his time left here happy, comfortable, & keeping him from feeling so bad from the chemo. Sometime in the middle of this month, Conner was given roughly 2 months to live. To look at him & be around him, you would never know this is a kid who has less than 6 months left on this earth. He is a vivacious, energetic, beautiful little boy. It had been a couple of months since we had seen them, when we finally were able to see them yesterday at clinic. Since he’s been off of treatment, he had a FULL head of hair. He looked so good. He was getting blood yesterday (they will continue to give blood in order to keep him feeling good). Although, as I read Karrie’s FB status yesterday evening, she informed that he had a bad reaction to the blood (which can happen) & was in the E.R. with difficulty breathing, peeing blood, shivering, & a rapid heart beat. Almost every trip he’s had to the E.R has resulted in an admittance onto the 5th. This little boy has spent much of the last 10 months in the hospital.

If you are interested in following his journey, along with praying & supporting his family, you can go to www.teamstell.com. I encourage you to read his full story, it will change your life (the things a 3 yr old says about God revealed to me why God encourages us to be like children in our faith)!! You can’t imagine the details of dealing with this… having to sit down & tell their daughter after a quarrel with her little brother that he won’t be with them much longer. I am soulfully asking all of the amazing people who have spent so much of their prayer time on Keely, to include Conner, his parents Karrie & Aaron, & older sister Taylor. We consider them one of our own. This disease is something we fight together… once affected, there is an instant bond with other families. It is impossible for fellow families to not be affected. These kids fight… they fight harder than most adults will ever know… for so much of their young lives. The Stell’s are Christians who are desperately in need of the peace from God that surpasses all understanding (Philippians 4:7 ). The Bible explains why it is so important to step up & pray, support, & care for our brothers & sisters in Christ….

Proverbs 27:17- “As iron sharpens iron, so one man sharpens another”

* On the ride home after talking with the Stell’s yesterday, I couldn’t keep my tears from falling & I said to Brian, “You know, I know that some people don’t even get a day, but 10 months is simply not long enough (especially with all of the worldwind of events. No time to be stable in your mind) to prepare to lose your young child.” I was reading Aaron’s blog last night & he says this… “Thats whats weird, you would never know he was sick by seeing him. How many plans, dreams, and thoughts can you fit into 2 months.”

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9 Responses to “One Of Our Own :(”

  1. vloertegels leggen January 31, 2010 at 10:03 am #

    How did you make this template? I got a blog as well and my template looks kinda bad so people don’t stay on my blog very long :/.

  2. vanessathompson January 31, 2010 at 5:54 pm #

    template? I’m not sure what you’re referring to? (excuse my challenged termnology). Can you specify?… I’ll be glad to help you out however I can!

  3. Steve Caronna February 1, 2010 at 3:22 am #

    I am praying for this family tonight. I am assuming that they have a Church, since you mentioned that they are Christians. If there is anything at all that Living Word can do to reach out to this family, will you please let me know? We not only love you, we also love what you love.

    • vanessathompson February 1, 2010 at 4:29 am #

      Thank you so much Pastor!

  4. Alex Rudder February 2, 2010 at 7:59 pm #

    Oh Vanessa, tears are filling my eyes right now. There are no words…I will be in prayer over this precious little boy and his family. Me being the mercy motivated person I am feel a burden for them. I wish more people would understand how blessed they are and would focus on what God has given them instead of being so wrapped up in themselves and petty little things. Thank you for always being so raw and real. I love that about you!!

  5. cho-cho February 11, 2010 at 9:25 am #

    Great post. I got new perspective after read this article.will return again to seek new vision.

    thanks
    choco

  6. Jill Hoffman February 26, 2010 at 2:47 am #

    Vanessa, you probably don’t recognize my name but might recognize my face from the church nursery. I often follow the updates that you write on Keely and was VERY touched by Conner’s story. Almost a year ago I sat in the Gravely building with my son Zach when I peered across the hall from the toy room and saw your daughter’s picture on the cork board. I was so filled with emotion mostly because a fellow church family of mine was dealing with so much. I also had weird feelings of blessings and guilt at the same time because my son was walking home with a vitamin deficiency and not leukemia. The two days that we spent at UNC were such an eye opener. Since that day I have been praying from Keely’s health. Thank you for allowing me to share. Jill Hoffman

    • vanessathompson March 1, 2010 at 8:30 pm #

      Of course I recognize your name!! Wow. I had no idea that your son was having any issues. Oddly, we have felt those same feelings of guilt & blessings ourselves!… yes, even given our situation. There are some kids/families that we have formed some amazing bonds with from clinic that don’t have nearly as positive of a prognosis as Keely. I am so thankful for your prayers, I am thankful that your son did just walk away with a vitamin deficiency & not leukemia, & I’m thankful that you allowed our family to penetrate your heart & give you a feeling of blessing during a time when your child was dealing with a physical attack. God bless Jill. & thank you so much for reaching out!

  7. karrie November 21, 2012 at 1:08 am #

    i just want you to know that you sharing conners story meant alot to us. we thank everyone that was praying for him. hope keely and your family and doing well hugs from the stells

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