May 23
Today marks day 18 since he was given 2 weeks to live. He has done much better these last couple days. He has been doing a lot more eating and drinking and has been able to keep it all down. Not exactly sure what to think of this. It’s good but it could also be a sign of the bad coming from what I have read. It said close to the end they ask for there favorite foods and have more energy and so on. He has had his continuous morphine upped from 1.2 mg per hr to 1.8 mg/hr, and again to 2.3 mg/hr. He had pains in his arms, legs, and lower quadrant. The arm and leg pain I think is from being so skinny and having little to no nutrition for 18 days. We haven’t done a whole lot exciting besides the beach and harley rides. We did take him to Frankies which is an indoor arcade type place. He actually stood up and was playing skee ball and kids basketball games. I thought for sure he was going to pay big time for that later, but didn’t seem to bother much. We let the ducks and chickens out tonight for the first time. Two of the ducks took off flying and one flew clear up over and around the house. They both returned very uncoordinated to the ground right by the pen. To bad Conner was napping he would have loved to see his babies take to the air. Life continues as we have known it for a long time and Conner continues to be as strong as skin and bones can be.
Daddy
Tags:
May 17
Not a whole lot has changed with Conner. He continues to eat basically nothing and its showing. He’s skin and bones. If he takes to big of drink he throws it up, due to the lack of room in his stomach. Which is funny because I told him just to take sips every once and a while so he wouldn’t throw up and he replied….”But I can’t understand how much I’m drinking”…..2 days ago he felt up to trying a harley ride so we did….he made me ride Karries and he was on back and uncle Brian rode beside us on his R6. This was alot of fun and wasn’t expected to ever happen again in my eyes. Yesterday we packed up and all went to the ocean. Conner wanted to get out of the wheelchair and sit in the sand. He actually took a couple steps on his own. Something about the beach that just makes everything feel better for him I guess. He grabbed a bunch of shells and fed the seagulls popcorn. Today we had an old neighbor visit, and it made a good reason for Conner to get out of the house and give a tour. So we pushed him out on the dock and he fed the fish. He then showed off his flock of chickens and ducks. He also wanted to shoot his BB gun today so we did that as well. He continues to be Conner and prove people wrong. Today makes day 12 of his 14 days given. He’s still going strong considering. I guess thats why the doc said well I guess this is Conner. Nothing has been the norm since the very beginning.
O yeah and to correct some peoples confusion. Dave is a good friend and old neighbor of ours, and the one who posts these for me,(I email to him he posts) not Conner’s daddy. I, Aaron Stell is the one with the honor of ending these posts as…………………….
Daddy!!!
Tags:
May 14
Conner is still hanging in there. He has actually had his best days today and yesterday. He was acting completely like himself other than the bed and wheelchair thing. We tried to see if he could stand last night but it was to much pressure/pain for his stomach to handle. His catheter had been giving some problems so the hospice nurse came and deflated the balloon and tried to readjust it. Then she flushed it, since it was somewhat plugged. Well later last night it was plugged again and as he tried to pee it was shooting out the sides of the tube rather than just draining. So we called the nurse again and this time she pulled it. Very painful for Conner as any man could imagine. But was a great relief, since it was basically acting as a dam. After it was out he urinated 250 cc’s which is alot. In this was some blood clots which one would assume was the cause of the blockage. Again I have had to see Conner in pain I think thats like the millionth time. Conner’s blood counts have dropped, platelets are the lowest they have ever been and the hemoglobin is a close second. It sounds as if all transfusions would be useless at this point as the bad cells are over crowding. We are quite sure that Conner is aware of what is happening inside his little body. Without any words it seems he has an understanding of the unknown. This gives us a somewhat peace of mind that he seems to understand what is happening and yet isn’t afraid. He talks and dreams alot about my hunting dogs which are both in heaven (all dogs do go to heaven right?) Conner doesn’t know a stranger and will talk to anyone. Quality traits for a little boy beginning a journey that his parents and sister won’t be along for. Karries mom died when Karrie was just 8 yrs old. She never got to be a grandma here on Earth. I’m sure she will be waiting with open arms when her grandson arrives.
Daddy
Tags:
May 12
I am horrible at keeping up with these updates. To be quite honest I try to keep these things off my mind as much as possible. As many already have heard Conner has changed for the worse. On Wed. the 5th Conner woke up at 6 AM in severe pain. His side was hurting and he don’t whine about stuff let alone scream unless its bad. So I thought his spleen had ruptured so we rushed to the closest hospital Johnston Community Hosp. and had him checked out. After about 3-4 hrs it was figured out that it wasn’t ruptured (Dr. Blatt said that over the phone at 6:30 AM) <—-she's good!! He was put on morphine for the pain and they had us go follow up at UNC. When we arrived at UNC she immediately gave him a bunch of morphine and looked him over. She said something about 2 weeks and I didn't quite hear it so I asked "2 weeks?" she again said it and I asked " Your saying he only has 2 weeks to live??" She answered "yeah I think thats right, but this is Conner so it may be a month" Obviously we were shocked and devastated by this news. Dr. Blatt had always said in the past when Conner would get sick "I don't think this is it" and she was always right. This time she said "this is it, this is the beginning of the end" We were really shocked by how fast this came about. Tuesday night we were all 4 riding Harleys and he was up playing, running, and fine. Which I must add that I am so happy I bought Karrie's harley Tues. We got to all ride together, Taylor and I on mine and Conner and Karrie on hers. Conner has been in a bed or a wheelchair ever since last Wednesday. He has had 2 doses of radiation to try to shrink his spleen and liver for comfort. Hospice has been brought in, he has a hospital bed at home. His brain still wants to be the old Conner but his body just can't do it. It breaks my heart watching him want to do these things but somehow knowing he can't. He has been on continuous morphine since Wed. and has a push button for when the pain spikes. He has a catheter in and his urine looks like tea and or bloody. We have been told by nurses and drs. that eating, drinking, medicine, and oxygen is something we don't need to force. All these things will eventually not work or be unnecessary and its not worth focing them. Conner sleeps 22-23 hrs a day on the bad days. He has had a couple good days, with smiles and more awake time. We feel so helpless but will not be selfish. Each day now is a blessing. Conner has touched alot of people and hopefully changed alot of lives for the better. He has been through more than most and is more of a man than most. If you drive by my house and see a wheelchair in the road no worries Conner is just getting the mail..Or if you see his wheelchair tied to the harley no worries we are just riding. (just kidding) I told the hospice nurse I was gonna tie his bed to the back of the harley and we were going riding. She said she would love to see that. I'm not sure what I will do when the time comes. It is already weird. For those who don't know Conner was my shadow. Everything I did he was right there with and if he could helping. Not sure what else to say.
Daddy
Tags:
April 28th
Well things had been normal around here. We decided to go to Iowa to see family and help my parents cut down a big tree in the back yard. We flew in on Thursday and were to fly back home on Tuesday. Well Sunday night Conner spiked a fever so we headed to the Carroll hospital. After speaking with a UNC doc by phone it was decided to give a antibiotic and our choice to leave after things looked better. So we left a couple hrs later and about 5 miles down the road Conner went into a basic state of shock. He was shivering wildly, hallucinating, and making no sense. We turned around and went back to the ER. His temp was now 106.3 and he was going into septic shock. They decided to transfer him to Blank Childrens in Des Moines by ambulance. I followed about a 1/2 hr behind with my mom. When I arrived there was about 5 people in his ER room and it wasn’t pretty. Once again we have got to here and see things no one should ever have to. They ended up putting him in itensive care where he stayed until Friday. His blood pressure was way low and he was on drugs to raise it. We then flew home that same Friday he was released. He is still on antibioticsfor the 2 bacterias he had in his bloodstream. We went to clinic today and got counts. Platelets are way low but good for him. His hemoglobin(blood) is lower than normal for him but no transfusion was given. The doc said he looks skinnier and not quite as good as normal. His spleen is very enlarged along with a large liver. We are sure hoping things haven’t begun to make there turn. He is still fairly normal but does get tired more often which I hope is due to the low hemoglobin. He has and still is putting up one hell of a fight, but even the toughest of the tough eventually either win or wear out and lose. This disease picked the wrong boy if it thought it was gonna be any easy win. She keeps talking like she wasn’t expecting him to still be here and is not sure what to do. Usually after treatment is stopped it don’t take long. So she said today she is going to email St. Judes and see what there opinion is since he keeps hanging in and not getting worse.
Daddy
Tags:
April 10
OK its been forever since I updated. Not a whole lot has changed. We went to clinic a few days ago and once again the counts have stayed about the same. No transfusions were necessary and they let us go home. Next appt. is April 30 and will again be a count check. Conner continues to be Conner, he is as wild as ever and if he isn’t all bruised up something is wrong. The 6 ducks we had got killed by the dog after I spent hrs and hrs making them an outside house. In one night the husky chewed through the chicken wire and killed them. We have now gotten 4 new ducks which have grown to about the same size the others were, and we have 10 chickens. I have learned from my mistakes and now they are safe (knock on wood). Life is fairly normal at the Stell residence for a change. Everyone who sees Conner is amazed at how much hair he has. We are basically just trying to enjoy everyday as it comes.
Daddy
Tags:
Mar 8
Once again I’m late updating. We had clinic on Wed. March 3rd, labs were drawn and a CT scan. The blood counts were up a little from last time and no transfusions were necessary. The CT scan of the lungs also came back good. Not sure if any spots got better, but none got worse. Meaning after 2 months with no additional growth of the fungus spots its considered non-active. This is one step closer to transplant, if the leukemia would back off. The spleen is still enlarged which is a sign of leukemia. He continues to act like a normal kid and looks great. We had our party at the house on his actual b-day Mar. 7 and had a great time. He has received probably a 100 cards in the mail (thanks to all). We have started going to hockey games which the kids really enjoy and is another way to get out of the house. The new wave of warm weather has woke the fish up out in the pond. They have begun to eat more pellets and tonight we caught 3. Conner is the grand champ at reeling in. The baby ducks are starting to be not so much baby. They have probably tripled in size and we really enjoy them. Once every few days we let them swim in the bathtub and it is quite funny. A couple of them dive under water and swim. In another month or so they will be released out to the pond. We are hoping they stick around considering they are flying mallards and the wings will not be clipped. From what I have researched they will. Not much else going on at the funny farm. I think next may be chickens. GO CANES we will be there on Thursday.
Daddy
Tags:
Mar. 1
Once again its been a while since the last update. Other than day to day life at our funny farm, not much has really changed that we are aware of. On the 19th they once again recommended against a transplant. Conner’s blood counts were better than expected, but still aren’t good. He has not had to have platelets or blood since the transfusion he had the reaction to. The B-Day party in VA was a success and all had a great time. Thank God Conner was and is still healthy enough to enjoy these things. We went to the circus a few days ago and had the circus celebrity tickets where you get to be a part of the circus. Was fun but not worth what it cost!! We ordered 6 baby mallard ducks and they arrived about 4 days ago. They are fun to watch and will be a nice addition to the pond once they get a little bigger. Conner continues to amaze everyone and we are hoping it stays that way. Next appt. is Wednesday March 3. Blood counts will be checked and they are going to do another CT scan of the lungs. Will post again after these results.
Daddy
Tags:
Feb 14
I’m a little late. We have company again and I hadn’t posted the final results of the marrow. It is basically the same as the previous one, 12-15%. All the bad cells are now monosomy 7 where in past months it had only been half. So not real good news but better than real bad news. UNC still thinks transplant is a bad idea, but she is gonna call a couple other places and see what they think. We will hear these answers around the 19th.
Daddy
Tags:
Feb 14
I’m a little late. We have company again and I hadn’t posted the final results of the marrow. It is basically the same as the previous one, 12-15%. All the bad cells are now monosomy 7 where in past months it had only been half. So not real good news but better than real bad news. UNC still thinks transplant is a bad idea, but she is gonna call a couple other places and see what they think. We will hear these answers around the 19th.
Daddy
Tags:
