Brianna is now married. It was a beautiful wedding, very busy and a bit of a blur but I have over 400 pictures of the day on my camera. I will post some when I get home.
Joel gave himself his needle this morning. It took him about 15 minutes and we were all laughing so hard and he was shaking. It took him two pokes, the first one he got into his leg but accidentally pulled it right back out. I am sure that in no time he will be like Rambo and able to stitch up all his own wounds.
Joel had another CAT-scan this morning. His blood counts have all dropped so he will not be starting chemo this week. We will meet with Dr. Dix in the morning to get the results of the scan and a plan for the rest of the chemo and then Joel gets to go home for a week. He is a happy boy.
Monday, August 8, 2011
Wednesday, August 3, 2011
A chip on my shoulder
So, this round of chemo was supposed to be my turn to come down with Joel. But somehow Grant weaseled his way into coming down with Joel. He got to be a part of Joel's first ambulance ride to the airport and then they got to fly down on a super cool fast jet at one in the morning. I guess the ocean and city lights looked amazing. I got to drive down in the heat of the day with a van full of kids. Life just doesn't seem fair.
Anyway I am down here now and visiting with Joel and he is doing very well. The numbness on the left side of his body is gone. He is getting a couple of needles in the legs everyday which is supposed to make the clot not grow any bigger and then his body should be able to get rid of the clot on its own without any extreme measures being needed. I don't know yet how long he will have to get the shots for but one of the nurses said she would teach him how to give them to himself and then he could just do it himself at home. He DOES NOT want to give himself shots.
The clot was a side effect from the PEG-aspariginase (the two needles he gets in the leg). He was due for another dose of it on Friday but I'm not sure how that is going to work now. He is actually supposed to get 4 more doses of it through out the next few months but we are just waiting to hear back from all the specialist about how this will affect the rest of his treatments.
Chemo depletes the body of certain nutrients and minerals and the PEG-Aspariginase has depleted Joel's body of what ever it is that keeps the blood from forming clots. The pediatrician did tell me what the nutrient was but I did not write it down and I have forgotten already.
Anyway, I have lots of questions to ask the oncologist tomorrow. I think we are supposed to meet with the radiologist too so that he can explain the results of the first CAT scan and then I think they will be doing another CAT scan in a few days.
Joel is tired and his head still hurts so he is still getting a little morphine. He tends to be way too stoic and doesn't like to take any extra medication. He is still very nauseated and is not eating yet. They have been checking him lots for any neurological damage and I don't think they are finding any problems. Right now things all look really good. It is just another waiting game.
Anyway I am down here now and visiting with Joel and he is doing very well. The numbness on the left side of his body is gone. He is getting a couple of needles in the legs everyday which is supposed to make the clot not grow any bigger and then his body should be able to get rid of the clot on its own without any extreme measures being needed. I don't know yet how long he will have to get the shots for but one of the nurses said she would teach him how to give them to himself and then he could just do it himself at home. He DOES NOT want to give himself shots.
The clot was a side effect from the PEG-aspariginase (the two needles he gets in the leg). He was due for another dose of it on Friday but I'm not sure how that is going to work now. He is actually supposed to get 4 more doses of it through out the next few months but we are just waiting to hear back from all the specialist about how this will affect the rest of his treatments.
Chemo depletes the body of certain nutrients and minerals and the PEG-Aspariginase has depleted Joel's body of what ever it is that keeps the blood from forming clots. The pediatrician did tell me what the nutrient was but I did not write it down and I have forgotten already.
Anyway, I have lots of questions to ask the oncologist tomorrow. I think we are supposed to meet with the radiologist too so that he can explain the results of the first CAT scan and then I think they will be doing another CAT scan in a few days.
Joel is tired and his head still hurts so he is still getting a little morphine. He tends to be way too stoic and doesn't like to take any extra medication. He is still very nauseated and is not eating yet. They have been checking him lots for any neurological damage and I don't think they are finding any problems. Right now things all look really good. It is just another waiting game.
please pray
Grant took Joel back to emergency last night and they were flown to Vancouver in the middle of the night. The boys and I are following this morning. He was still throwing everything up and his head still hurt yesterday. Then the left side of his body went numb. They did a CAT scan and found a blood clot in his brain. So, I guess he was having a stroke. When I went to see him last night he was joking and teasing me about my bad sense of direction, he was alert and his cognitive functions were all fine. He was on lots of morphine and feeling really good. They have given him two kinds of medication that should dissolve the clot. Grant said he would only phone me if there was bad news and he hasn't called yet.
Monday, August 1, 2011
Hoping and Praying
So after a few days of Joel eating less and less, feeling increasingly more tired and weak, and then 24 hours of throwing up and not being able to keep anything down, Grant took Joel to emergency where he is now being given IV fluids and anti-nausea medication. We are hoping and praying that Joel starts to feel better soon and that we can all be at Brianna's wedding this weekend.
Tuesday, July 26, 2011
Chemo in Vernon
Joel went to Vernon this morning to get his Vincristine. His counts were all so low so he had to go back for a transfusion. Platelets were fine, around 120 but that was because he had a transfusion a week ago. Hemoglobin was 77 so that is the cocktail he gets today. White cells were at 0.4 which means his ANC will be next to nothing. So, Joel will be staying home tonight and not going out with friends as previously planned. I don't think he will protest too much or give me puppy eyes as he is feeling wretched and has been throwing up all day.
So this was the last chemo for the Delayed Intensification I phase. Joel is scheduled to start Interim Maintenance II on August 4th but chances are his counts will not be recovered by then as they are still in a downward spiral. Interim Maintenance II will take 57 days and it consists of Methotrexate every 10 days, but not in dangerously high doses as last time so he will not be needing any antidotes. He will also get Vincristine every 10 days, spinal methotrexate on days 1 and 31, and PEG-Aspariginase on days 2 and 22. The PEG-Aspariginase is now being given in a drip through the port instead of two needles in the legs. Joel prefers the drip plus it is much safer as with the needles, the whole dose is given instantly and if a reaction occurs it is more severe. With the drip method the injection can be stopped as soon as a reaction is noticed.
So this was the last chemo for the Delayed Intensification I phase. Joel is scheduled to start Interim Maintenance II on August 4th but chances are his counts will not be recovered by then as they are still in a downward spiral. Interim Maintenance II will take 57 days and it consists of Methotrexate every 10 days, but not in dangerously high doses as last time so he will not be needing any antidotes. He will also get Vincristine every 10 days, spinal methotrexate on days 1 and 31, and PEG-Aspariginase on days 2 and 22. The PEG-Aspariginase is now being given in a drip through the port instead of two needles in the legs. Joel prefers the drip plus it is much safer as with the needles, the whole dose is given instantly and if a reaction occurs it is more severe. With the drip method the injection can be stopped as soon as a reaction is noticed.
Tuesday, July 19, 2011
Heading Home
So after a dose of Vincristine, Peg-Asperaginase and a transfusion of platelets, Joel is on his way home. He should arrive home close to midnight. His counts have fallen drastically, platelets were at 10 this morning and hemoglobin was somewhere in the 80's so he will probably need to get more transfusions from Vernon hospital. Joel was hoping to spend some time helping the guys out at camp over the next few weeks but I think I will be using the contract he gave me and I will keep him close to home. I am a mean, mean mom.
Sunday, July 17, 2011
Joel's boring week.
I think Joel has had a pretty good week. He hasn't gone out or done anything exciting this week due to his feeling so tired and his blood counts being so low. He has been sleeping till noon most days and also having an afternoon nap. His hair is starting to grow back, just in a little patch on the back of his head. We have been teasing him about trying to start a new trend. He had some nausea and headaches during the week but I think it is starting to get better. I have noticed that most of the kids going through treatment at RM House just want pasta when they start to feel sick. Joel is no different. If we want him to eat then we need to stock up on mac and cheese, ravioli, perogies and anything with noodles. His next treatment is on Tuesday, shots in the legs and then he should be able to come home for about two weeks.
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