Feb 7
Quick update…….went to clinic again on Thurs and counts were better than expected. Platelets were low at 14 but we chose to not tranfuse due to the last reaction. The spleen has actually gotten about half as small as it was. So now he has been eating and drinking alot more. The doc decided we will do another marrow this coming up Tues. to see what is actually going on. He just keeps baffling everyone by how good he looks and how his counts are staying somewhat steady. He took a fall down a couple of our stairs and started bruising so we rushed to to the ER to be safe. They did a CT scan which was normal and his platelets had risen to 21 on there own. So no transfusions and were released. Now time to eat and watch the Superbowl…..Go Saints!
Daddy
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Feb 2
It has been a super busy last couple of weeks. The Disney trip was rushed and we had an awesome week in Florida. The weather was nice the whole time. Give Kids The World Village is such a great place and does a lot of good things for a lot of sick kids. I think they have had close to 100,000 families come there. Aside from the village we got special treatment at all the parks as well. We got back Thursday afternoon and met with my sisters family who flew in for 5 days and my cousin and husband who flew in for an extended weekend. We enjoyed good family time but got a scare right away Friday. Conner went to get platelets and ended up having a reaction to them. He seemed back to normal so they sent us home and an hr later he started reacting again. Got a fever, chills, fast heartbeat, low oxygen level, and was peeing blood. We went to the ER and they admitted just for 1 night thank God. He seems to still look and feel good other than not eating much due to the enlarged liver and spleen. We will be continuing to make visits to the clinic for platelets and blood at least once a week I guess. We enjoyed the snow, made a snowman and went tubing behind the 4 wheeler.
Daddy
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Feb 2
It has been a super busy last couple of weeks. The Disney trip was rushed and we had an awesome week in Florida. The weather was nice the whole time. Give Kids The World Village is such a great place and does a lot of good things for a lot of sick kids. I think they have had close to 100,000 families come there. Aside from the village we got special treatment at all the parks as well. We got back Thursday afternoon and met with my sisters family who flew in for 5 days and my cousin and husband who flew in for an extended weekend. We enjoyed good family time but got a scare right away Friday. Conner went to get platelets and ended up having a reaction to them. He seemed back to normal so they sent us home and an hr later he started reacting again. Got a fever, chills, fast heartbeat, low oxygen level, and was peeing blood. We went to the ER and they admitted just for 1 night thank God. He seems to still look and feel good other than not eating much due to the enlarged liver and spleen. We will be continuing to make visits to the clinic for platelets and blood at least once a week I guess. We enjoyed the snow, made a snowman and went tubing behind the 4 wheeler.
Daddy
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The trip to PA was all we had expected and more. Once again big thanks to ECI and John Gleim, but the South Middleton Township went way out of the way to make this super exciting. They had snacks, a fire truck cake, drinks, toys, even a road sign made that said CONNER CIRCLE. They also provided a dump truck ride, fire truck ride, and tractor ride. One of the guys that worked there offered us to come to his church for prayer, which we did. Big thanks to all at S Middleton. Conner also rode numerous pieces of big heavy equipment and met a bunch of daddy’s buddies in the office. We went snow tubing that evening which the kids loved.
Just as we were starting to feel normal, slap back to reality. Conner started complaining of pain on his side and back. We noticed a few bumps and called the oncologist on call. We were advised to keep an eye on things and if it got worse to call or come in. Monday we headed to clinic to get labs drawn figuring he would need platelets. We found the clinic closed due to the holiday. Since we were already in town we called again and were advised that only 1 kid was in the ER and to go in and get labs drawn. Conner’s oncologist came down to the ER and looked him over. His spleen is enlarged a lot, and the liver somewhat. He needed platelets and they decided the bumps was a case of shingles. With being immunosuppressed they decided it was to risky to chance going home. He was admitted to start a drug to get rid of these shingles. He may get to come home as soon as tomorrow as long as it stays the same or gets better.
Along with the enlarged spleen and liver, now his blood is showing numerous leukemic cells. This is a bad sign, for the last 8 months few if any leukemic blasts have been present in the actual blood. All leukemic blasts were in the marrow. Meaning the marrow is flooding and they have to go somewhere. They enter the blood stream then crowd the spleen, liver and eventually other organs. When first diagnosed the spleen was past the belly button and it was 62% blast. Now the spleen is maybe an inch or so from the belly button, which I will use as an estimate of 30-50% blast (not confirmed or said by anyone other than me).
His Make A Wish will be granted Feb 1 through Feb 7 at Disney World in Orlando. How we hope that God and this disease can cooperate with these dates. We still pray for our major miracle but a couple small ones wouldn’t hurt along the way.
Daddy
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Jan 12
The bad news has yet been confirmed by another Dr. Today we spoke with Conner’s primary who gave bad news again and then we spoke with the transplant dr. who also gave bad news. The transplant Dr. said to be honest I feel I would be killing your son if he went to transplant and thats not fair for him or you guys. She said her guess is less than 10% chance he would live through the transplant and less than 2% chance the disease would stay gone if he did make it. The other Dr. said 2% is being generous. They both said stopping treatment is basically all thats left, and we have decided this is what we will do. They went into some details of how things end and whats easier and so on. We have received DNR (do not resuscitate)paperwork and dreading signing it. We have asked for an emergency, rush Make A Wish and are waiting for when this may happen. We have chosen Walt Disney World in Orlando FL. We will be heading to PA tomorrow to go to some jobsites and let Conner run some HEAVY equipment and have a fun filled day. Courtesy of ECI Construction, and John W. Gleim Inc. These companies are in for a treat by having the honor to meet our son, and we deeply appreciate the time and money this will cost both of them. Neither Dr. would give a time frame and both seperately said thats up to God. I know in the beginning they had said 2 months with no treatment so this is my guess maybe/hopefully a little longer due to lower leukemia than the beginning. This is a smart, ruthless, unpredictable disease. The hardest part is he looks so good on the outside, but yet the inside is so messed up. I guess Dax’s mom said it best, cherishing every moment…right down till the day Dax died when she said cherished every moment. They have never met but boy do they have so much in common and I’m sure Dax now knows what its like to not suffer from this nasty disease, and when that day comes maybe they’ll meet up and laugh and play. My hunting dog Lady died recently and I’m sure she has all the best pheasant hunting ground scoped out. They can’t hurt but so much with BB guns. Conner has given so many people so many smiles and others so many tears. He grows on you, everywhere we go people come up and talk to him. Not because he looks sick, because he doesn’t. 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.
Daddy
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Jan 7
This will be the hardest post I ever write……..I cry as I type…….We have gotten bad news once again. The marrow shows 14% monosomy 7 lineage(myeloid),… and lymphoid lineage, all is thought to be malignant by the pathologist. I’m not sure how to say this to everyone. This has not gotten better if anything has gotten worse. Once again chemo has failed to bring remission and this goal of remission has only yet gotten further away. I feel deeply saddened to tell anyone who cares that I believe we have finally came down that road we didn’t want to. That road that has no detour, no merge, no left turn, no right turn, no T intersection. Its a dead end tunnel, no way to sneak out, the sides and the end are blocked (we think). I did one of the hardest things I have ever done in my life tonight. I took my daughter into her room as she was crying jealously of her brother. I sat her on my lap and had one of those talks no one is supposed to ever have to have. That I’ll keep private, but I’m sure you all have good imaginations. What do I say. Well I know the make a wish people are coming this week and I will be asking for an emergency wish. I also know that we will be going to PA soon so Conner can run some jobsites. We once again are looking for no outside opinions other than maybe family…….We will live with it!!! I love my son, he is quite the amazing boy!!!!!
Daddy
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Jan 7
This will be the hardest post I ever write……..I cry as I type…….We have gotten bad news once again. The marrow shows 14% monosomy 7 lineage(myeloid),… and lymphoid lineage, all is thought to be malignant by the pathologist. I’m not sure how to say this to everyone. This has not gotten better if anything has gotten worse. Once again chemo has failed to bring remission and this goal of remission has only yet gotten further away. I feel deeply saddened to tell anyone who cares that I believe we have finally came down that road we didn’t want to. That road that has no detour, no merge, no left turn, no right turn, no T intersection. Its a dead end tunnel, no way to sneak out, the sides and the end are blocked (we think). I did one of the hardest things I have ever done in my life tonight. I took my daughter into her room as she was crying jealously of her brother. I sat her on my lap and had one of those talks no one is supposed to ever have to have. That I’ll keep private, but I’m sure you all have good imaginations. What do I say. Well I know the make a wish people are coming this week and I will be asking for an emergency wish. I also know that we will be going to PA soon so Conner can run some jobsites. We once again are looking for no outside opinions other than maybe family…….We will live with it!!! I love my son, he is quite the amazing boy!!!!!
Daddy
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Dec 30th
As many know the website was down for a week or so and once fixed a couple of the latest posts are not showing up. Not much has changed as far as Conner. We are awaiting a bone marrow test on Jan.5th to hear whats happening inside. On the outside he looks and feels great. We got to enjoy xmas at home with Conner. He has made several trips to receive platelets mainly and once for blood. He was admitted once for a small fever that went right away and was released 3 days later. The counts have finally began to rise we think so hopefully it will be cellular enough for next weeks test. I will update again after these results
Daddy
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Oct. 30
Surprise, Surprise more bad news. The leukemia has gotten worse and so have the fungus spots on the lungs. So transplant will once again be put off, and so will the surgery on the lung. If its getting worse or more spots are popping up, it is pointless to do a surgery to remove whats there. We will be doing another marrow test on Tuesday with the hopes that its like last time and stuns everyone, but this time its a more recovered marrow so them chances are slim.
Now my somewhat thoughts, if you don’t want to hear it stop now 
Everything will come out, nobody gets the complexity of this. Conner is just one person on the crew of this ship. Even the Titanic could only hold so much water until it broke in half flipped up on both ends and sunk and it was the strongest ship ever made, impossible to sink. Then as the crew is doing whatever can be done fighting a distressed ship the by-standers talk,gossip, and go out of the way to make it worse/impossible for the crew to work as a team. A ship this big has to be run by a team. Every captain has downfalls and flaws but couldn’t they be talked about on the liferaft or at shore. You don’t stab the captain in the back when the ship is in ruff water. These by-standers can’t understand, no one can understand. As if things aren’t bad enough and heading the wrong way already…..lets see if we can’t make it worse..Little did they know what might help them feel better, really hurt the whole team. Especially the one they thought it was helping, as if the burden wasn’t already big enough.
Almost exactly 7 months ago my life was normal, good I guess. I thought I had it all, and really had no worries. And money….money is funny. just about as funny as business they play hand in hand. You ride the ups and downs and are always a month behind. But exactly what is money/business, can it buy health or happiness. One can be fooled into thinking it can buy happiness, but in the end health is happiness. Money can’t buy health, I could offer UNC 10 billion dollars and at the end of the day the plan would remain the same.
There is a boy, a 3 yr old boy named Conner Aaron Stell, to UNC and most everyone else thats it, a boy named Conner Aaron Stell. But does everyone else understand he’s not just a boy to me or Karrie or Taylor. He’s a brother a son a life. All the little things are so funny and mean nothing, but to us they mean everything. When I ask Conner is that gonna be your school, he replied “when I go to the hospital I can go to school” most 3-9 yr olds don’t even know what the hospital is and my son talks as if its his second home. So many little things I could go on forever. For some reason it is our destiny to go through everyone elses worst nightmare, and believe me its a nightmare. The holidays fast upcoming makes it even worse. Now they talk about hold off remedies. I guess the plan is to hold off the inevitable. She said “He looks good so were not ready to write him off yet” You can’t write off your kid man!!!! You can’t write off your dog! How this all works is gonna get real interesting. I have a weird feeling my worst nightmare is fast upcoming. Yeah the one when I have to tell them to let my kid die. How can anyone do that!!!!!!!!! Everything crumbles down and you hope theres enough left to scrape, scrap, scoop up and startover.
Thanks for all the mail….unfortunately as the mail slows the disease speeds. Here I go again, but perfect example. It works in others minds for days but its in mine always and Conner is still sick right? Thats what no one gets. This isn’t the flu or a week long cold. Its CANCER the beast the worst, supposed to happen to old people. I hope my messed up mind doesn’t confuse anyone and I’m sure now no one will be asking for updates but…..join the club for 5 minutes!!
Daddy
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