Sept 25th
Things have changed for the worse. Conner slept most of the day Wednesday and was still extremely tired. So we decided to take him to clinic on Thurs figuring he would need a blood transfusion. His Hemoglobin was 5.3 which is super low and explains the tiredness and his platelet count was 9. This being critically low. He received transfusions of both which was figured to just go to his spleen and liver. The doctor told me she could see a major change in him from the week before and didn’t see this going on much longer. We went to the beach Thursday night and had a fairly decent time caught crabs on the beach and looked for sharks teeth. My mom flew in Friday evening so we only got to stay at the beach 1 night. Which was enough cause he was wore out. He has begun to really cling to mom. His morphine was raised from 2.8 mg to 3.0 mg and again to 3.3 mg/hr. He still can’t get comfortable as his stomach is the biggest it has ever been. He has begun to retain fluid in his feet and legs and also in his face. They gave lasix for this but didn’t really help. I asked the doc what this was from and the guess is his kidneys aren’t working right and causing fluid overload. Conner is completely not himself, haven’t heard that familiar laugh or saw that smile at all in the last couple days. As I type I can hear him saying ouchy ouchy ouchy stomach stomach. Pretty sure we are close to the end but ya just never know with Conner man.
Daddy
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Sept 20
Conner’s big lump on his neck continued to not get better, so we decided to have surgery done on it. This was a fairly risky surgery considering his condition. He was in clinic and got platelets the morning of surgery to help with the bleeding. They had did an ultrasound of the lump trying to determine what it was. It looked like swollen and infected lymphnodes. He had to be put completely under for the surgery. The surgery was a success and after being in recovery for 3 hours Conner got up and told mom to get the “skaburban” were going home. Once again I think he amazed everyone. We went home and things have been going pretty good. They were able to reduce the size by more than half and his neck is alot more comfortable now. We went today and enrolled him in a special pre k class at Taylor’s school. He has been wanting badly to go to school. So we will give it a shot. They upped his morphine to 2.8 mg per hour continuous. We went bowling 2 days after surgery which I thought was fairly amazing as well.
Daddy
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Sept 12
Its mommy’s b-day!!!!!!! We went out to eat mexican food and then went bowling. Conner is quite the bowler, I forgot to mention in previous posts that we have been bowling a few times. It was to funny because Conner’s hospice nurse happened to be at the bowling alley and we saw her do a gutter ball. So Conner walked over to her lane and said…I think you need the bumpers……He went for a motorcycle ride with mommy yesterday and his helmet hurt the bump on his neck. So we decided it was time to break out the power tools and fix the problem. Ended up we only had to take a pad out. Conner remains to be strong through all the struggles……Yeah struggles he don’t complain about pain!!!!!!!!!!!!!!!! I will try to put pics up of his neck but just imagine a oversized golf ball below your ear at your chin line. We are getting ready to go out to eat supper for mommy’s b-day….so long
daddy
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Sept 9
Quick update……I received quite a few emails reguarding the status of the med. I appreciate everyone’s kindness that offered to help with this expense. About 2 hrs after I posted the update I hadn’t heard anything so I called hospice. Trying to find out what was going on..you know this is a deadly infection going untreated as we mess with stupid ass politics… and they said they had put a call into Dr. Gold with no return. I paged him with a return call back within like 1 minute (funny). I said hospice has been trying to get ahold of you to resolve the issue with this drug with no returned call….he replied as you can see I’m receiving my pages and returning the calls.. Anyway I told him they, being insurance/hospice, were denying the drug, and how I thought it was stupid and so on. And he replied well I guess we can order an IV antibiotic but I’m sure that will be more. Just what I was thinking……Pay $1400 and shut up or we will admit and you can pay $14,000…..DUH!!!!!!!! So to make a long story short, whatever had to happen behind the scenes did and we were able to get the drug covered. Conner has been taking extended naps during the day and manages to keep his dad up most of the night asking me for drinks every 30 minutes. We have noticed more of the blackish spots, now appearing on his arms, that they were calling septic emboli. Also it appears he is retaining fluid in his legs and feet.
Daddy
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Sept. 8
Well over the last couple weeks things have started to change a little for the worse. Conner had got a lump in his left jaw line under his ear. They figured it was either an infected lymphnode or leukemia filling the lymphnode or both. Well it would swell and then come back down some and then swell again. He got a fever last friday so we took him to the ER. They did a blood culture and it grew some type of skin staph bacteria. Which they are figuring is the infection in his neck. We went up to VA to visit some of Karries family. Stayed at Brandy’s and the kids had a blast playing together. A couple close calls as far as Conner but managed to not have to take him to the ER up there. They sent us home 4 new hens to replace the 4 that a fox got of ours. One layed an egg in the pen on the way home. We went to clinic yesterday and his hemoglobin was 5.8 and platelets 19. Both considered critically low and received transfusions of both. He also got an IV antibiotic to help get back covered on this neck thing. The oral they had prescribed from the other day was thought to not have great coverage once the sensitivities came back on the culture. He also is thought to have septic emboli. So he prescribed another oral that should have alot better chance of covering, problem being its $1400.00 and I don’t think insurance or hospice is going to cover it. I should find this out here in an hour or so. Funny how they can pick and choose what they will and won’t cover as if obviously the outcome isn’t important to them. No one will give guess’s on time but he said this infection could very well make things turn the other way. Only time will tell
Daddy
steelup21@aol.com
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Aug 17
We went to the clinic a couple weeks ago about a bunch of bumps on Conners face. They thought it could be leukemia tumors..?? These bumps come and go but are clear now. They took his blood counts and his hemoglobin had dropped it was at 7.0. The other counts were fairly good for Conner. Again the doc said she is done with guessing time on this boy. But this drop in the hemoglobin could be a sign of things going bad again. Also his belly is huge. We decided to all fly to Iowa to help my mom and dad put up the garage they were getting ready to build. So the day before we flew we took Conner back to the clinic and got a blood transfusion to help out that hemoglobin. The next morning we headed to the airport. They wouldn’t let us take his oxygen on the plane and then almost wouldn’t let him go because they thought it could be a health risk for him without it. Then going through security they acted as if Conner was a terrorist full body checking him and Karrie could not be right beside him. They swiped his morphine pump for bomb residue. Then Taylor had snuck her knife into her carryon bag and they found that. So after this mess our first flight went well but of course the second flight was 2 hrs late. After getting here the first night Conner developed a rash near his broviac sight so we took him to the ER. They thought it was just chapped skin and no infection. So 3 days later his morphine ran out and we went to change it and discovered we had left the key to his pump at home. So Karrie took him back to the hospital and they prescribed a fentanyl patch and oral pain med to get us by til we got home. Well Conner started acting weird on this patch and throwing everything he ate or drank up. So we went in search of a key again. Then karrie says don’t you have a tool or hex head that we can use to open it. I looked at it again and thought a flat screwdriver might work. It did so we ripped the patch off his back, and waited a few hours. Then rehooked the new morphine back up. He seems to be doing better now. Will find out when he wakes up. We managed to get the garage framed, sheeted, and shingled. Now tomorrow we fly back home. Hopefully we have better luck on the way home. Never a dull moment.
Daddy
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July 21
Ok long time again……..The 9th we went to a tractor pull in Kinston. Our buddy Johnny plls with the one and only superbug. Its a volkswagon beetle converted into a pullin truck. 2000 somehorse power with the engine in back. Johnny was great and got Conner and Taylor into the seats of a bunch of the tractors and trucks. We all really enjoyed this night of tractor/truck pulling. The 10th was my birthday, Karrie and I went on a motorcycle run that supported breast cancer and ended at walnut creek for the Trace Adkins and Toby Keith concert. Had a great night until the ride home in the dark on the bikes and Karries motorcycle bag fell off the back. Lost everything, phone, debit card, pants, and the worst thing the camera. Had around a thousand pics from the last few months. Major bummer on all them memories being gone. The next morning as we were getting ready to go back and look for it. I got a call from wachovia fraud prevention saying someone was using her card. So I knew then it was pointless to go look. Well some Ahole has a camera full of our memories and the rest is replaceable so they can have all that. We just want our camera back. Anyway life goes on and we have a new camera with new memories. We went to Myrtle Beach the 16th to the 18th and of course had to go to Medieval Times as always. What a great show and meal this place is. Our kids love it. Went to the beach a couple times swimming and to the pool at Tonya and Butch’s resort. Conner broke out in a bad rash on his face and neck. Also peed some blood and was having a little trouble peeing. We got home and took him to the clinic on Tuesday the 20th. What a shock, his counts were way better than expected and she now said he could go on like this for a long time. She saidwe should try going DOWN on the morphine (yes I said down) 6 weeks ago was saying 2 weeks now this. He amazes everyone. She mentioned calling around to see if anyone would reconsider the bone marrow transplant and was talking about doing another bone marrow biopsy to see where things are. She thinks the rash bumps on his face are leukemic tumors (weird huh) makes no sense to me but shes the doc. We have been going the last couple nights to adult coed softball games and watching Papa umpire. The kids have enjoyed this as well. Oh yeah I unhooked Conner from his morphine pump the other night and he got in the pool and went down the big slide into the water by himself. He was swimming like a little duck. A little glimpse into the Stell household!!
Never give up never give in
Daddy
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July 7
As I say always I am horrible at keeping up with these updates. It seems as if has been a day or 2 and when I look its usually a week or 2. Conner is still hanging in there. He has stayed at the same morphine level for quite some time. He still walks, plays, and rides on the harley. We went to a Mudcats game the other night (one step below pro baseball) I think. Anyways we had a good time and Taylor got picked to help in one of the mid inning games they do. They had fireworks after the game and that was nice also. We drove to South Carolina July 3rd and bought the good fireworks that you can’t buy here. Both kids were healthy enough to fight and argue about 75% of the 3 hr round trip. But we made it home with a trunk full of fireworks and an empty billfold. We shot some off the 3rd and the good ones on the 4th. Conner would load the mortars into the shooting tube, then walk back away and I would light it. We enjoy feeding the fish every night and they are starting to really grow. I believe some have spawned, cause there appears to be alot of little ones that we didn’t ad. I got home from work the other night and Taylor told me her and mom had bought a cat and it was in the bathroom. I headed in to look and saw a baby wild rabbit in the empty bathtub. Quite the surprise grass and all in the tub. Well not sure which would be worse that or a kitty. Come to find out Taylor had found it in our pool fighting for its life not to drown. She let it go the next day and the day after another one was in the pool. That one wasn’t as lucky it didn’t make it. Not sure why these bunnies would decide to jump in the pool. One never knows what we might find in the skimmers of the pool. Lots of frogs, turtles, mice, bunnies, and I believe the old owners found a snake. Conner goes swimming on the days when mom has to change his bandage that covers his site. He still hasn’t really gained any weight but continues to eat fairly good and keep it down. In 3 more days we will see if he can blow out 30 candles for me.
Daddy
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June 24
Quick update….Been very busy but Conner is still doing about the same. He has some bumps on his face and an infected toe. We went up to PA again and went to Dutch Wonderland (kids amusement park) Which was fun but Conner was sort of not interested in the rides. He enjoyed watching a diving show they did and feeding the fish and ducks. We were going to go to Hershey park but Conner started coughing alot and acting funny the next morning so we headed for home. As always if in PA we have to stop at a jobsite and stop and see our buddies at ECI Const. Conner really enjoys doing both. I have also started a building in NC at a concrete plant which has kept me busy the last few days. Conner came out today and they gave him a ride in a dump truck, concrete truck, and the pay loader. Really wore him out, been sleeping all afternoon/evening. I will try to give a better update another day but tired and wore out myself.
Daddy
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June 2
Day 28 and doing much better than 2 or so weeks ago. Basically around the last update he started doing better and has continued to stay about the same or improve a little. He has been doing some walking and of course had to try to run and face planted. Happened to land right on his PCA pump he was carrying and it left a nice goose egg on his forehead. I took him out the day after the ducks first flew in his wheel chair to see if they would do it again. They did with me running after them. Conner laughed like crazy and couldn’t believe it. He shot his BB gun a couple times on 2 seperate occasions. We took the boat out twice and he drove it the second time out. He also took 2 more Harley rides. We took him to clinic today and surprisingly his counts were way better than expected. His platelets were 21 which is good for him, and the hemoglobin was 6.4 which is quite low but no transfusions. Conner was picking on Dr. Gold for being bald (he shaved his head for some event) and he picked back about Conner’s spiked up sweaty bed head. Conner finally realized that all the money his penpals send him had added up (Lynnette is famous for anywhere from $5 to $20 almost daily) so he went on a shopping spree with his mother. He got 2 Nintendo DS games, 2 Wii games, and a new case for his DS and games. We went to chuck e cheese tonight and Conner was shooting hoops on the small kid Bball game. He chowed down on some pizza and before we got home wanted a chicken nugget happy meal from McDonalds. Ate bunches today. Now is fast asleep.
Daddy
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