We had an interesting week with our little family and especially with Nathan and his steroids. It is extremely difficult watching your 5 year old be depressed but that is exactly what the steroids do to Nathan. Thursday was the worst day. Up at 6am because he was hungry and then sad that Dad was going to work and sad that Mom was going to work. Nothing consoled him until he had a movie followed with a nap and then the attitude changed. He painted with Grandma Elsie and had a good supper so was really ready to go to watch Carter's soccer game when I got home from work.
On Friday, I had no plans of taking Nathan to school as I could see he needed some time at still home but he begged and pleaded so off we went. The teachers asked if he was okay as they had never seen him this way, and he definitely was having an off day. There were no smiles, no racing to join in with his friends. Music and reading were the subjects first tackled. Since it was the schools 50th Anniversary a special mass was held. When his teacher announced they would be getting ready to walk to the church, this produced tears and Nathan became concerned as he wasn't up to walking that far. Rest assured I had no intention of letting him walk so we drove to the church instead. With such an off morning he was okay with staying home in the afternoon.
Carter had his first music recital in the afternoon. His group was for beginners under the age of 9. He did a great job and surprised everyone with a big turn to the audience showing a huge smile and a nice bow. There were 5 children in his category and he received 2nd place so we all were pretty proud, Carter included.
Saturday was a busy day for Carter as he prepared for his 1st Communion and Confirmation. We had rehearsal for an hour followed by a retreat for the kids for 2 hours. Nathan and Justin played with Ella and Johnathan. Nathan was in a much better mood but still cuddled with Auntie Pam for half an our before feeling up to playing. Auntie Lisa came in Friday night to stay the weekend with us and Auntie Julianne and Michelle were over as well. The kids enjoy having their aunties doting on them.
Sunday, Nathan was in the best mood he had been in all week. He enjoyed getting dressed up this morning and offered compliments to Carter and Grandpa at how nice they looked. Nathan enjoys putting gel in his hair, he makes sure his clothes match and he likes to wear belts. When I was helping him put on his socks this morning, he could tell one was higher than the other so asked me to adjust them. Then to make sure they matched he pulled up his pants to check. That really made me smile.
Mass this morning was about 1 hour and 40 mins and the kids did great. We had a visiting priest perform the service and he did a great job. I don't recall Confirmation where it is explained in such detail and at their level as today. It was really enjoyable. We had a great day with family over for a BBQ after the mass and we are blessed to have a reason to celebrate.
The week coming up is one without treatment and steroids (hurray!). We will attempt to go to school tomorrow and we hope Nathan and our family have a good week. We know that your prayers are working and we want to you to know that we appreciate them all!
Sunday, May 31, 2009
Wednesday, May 27, 2009
ADI Days 16 & 17
Nathan has had an interesting couple of days. His appetite is fairly large again but not ridiculous. He keeps wanting to do things like: play soccer, go to visit friends, go to school, etc but then when we do it he complains that he doesn't feel well.
Tuesday night we went to soccer in that big wind and he sat on the sidelines most of the game snacking on chips. With about 10 minutes left in the game he finally went out to play a shift. After running for a few minutes he tried to get off but coach Pam wouldn't let him. He ended up scoring two goals and then retiring for the rest of the game! Short shifts but make them count...
Our little family is doing OK, we are trying not to get blown away by the huge winds whipping through our area which means a lot more inside time. Carter is lucky as he has school each day and we've played ball Tues, Wed and again tomorrow.
We are liking these times away from the clinic but Nathan likes it most of all. He informed Shelley tonight that he was never going back. Hopefully when it comes time he will change that tune.
Tuesday night we went to soccer in that big wind and he sat on the sidelines most of the game snacking on chips. With about 10 minutes left in the game he finally went out to play a shift. After running for a few minutes he tried to get off but coach Pam wouldn't let him. He ended up scoring two goals and then retiring for the rest of the game! Short shifts but make them count...
Our little family is doing OK, we are trying not to get blown away by the huge winds whipping through our area which means a lot more inside time. Carter is lucky as he has school each day and we've played ball Tues, Wed and again tomorrow.
We are liking these times away from the clinic but Nathan likes it most of all. He informed Shelley tonight that he was never going back. Hopefully when it comes time he will change that tune.
Monday, May 25, 2009
ADI Days 13-15
The weekend was busy. Carter had soccer Saturday morning and is really enjoyable this year. His coach is a serious soccer player/coach but has made it a lot of fun for the kids. Once practise was done, Grandma & Grandpa Miller took the boys to the Circus. Arron and I attended a friends wedding social out at Pike Lake in the afternoon/evening and it was a great visit. They were lucky as the weather cooperated quite nicely for them unlike the rest of this spring. Justin was in bed when we got home as he missed his nap but Carter and Nathan had to stay up to show us their face painting and to tell us how wonderful their day was. Amazing that both Carter and Nathan complained about going to the Circus and yet both loved it once there. Both Nathan and Carter even asked if we could go back the next day.
Sunday morning Carter had his last class for 1st communion. Arron and the boys met Carter and I at church and then we attended a church pancake breakfast afterwards. The kids enjoyed the outing and were enjoying some time at the play ground before they were chased in by rain. The afternoon followed with some friends/cousins over for a play date. The sand pile on the lot next door has provided hours of entertainment. Carter asked me today to call and find out when the pile was going to be moved. When I asked why he said it was because he wanted to move his treasurers before the pile was moved. Now what could be in there? We are careful to take the kids clothes off in the garage or mudroom, to shake them out before going into the wash machine and yet when I pulled out a pair of clean socks to put on Nathan today, there was still sand in it. The bright side is that it is sand and not clay or mud :).
Nathan had his treatment today. He was glad there were no leg needles today but still didn't want to be at the clinic. Nathan's counts have fallen, with his WBC at 1.83 and Neutrophils at 0.83. I wasn't anticipating they would be that low but considering the strong drugs he has received I shouldn't be surprised. He also started another 7 day round of the steroid dexamethasone tonight. Considering his appetite hasn't decreased since the last 7 day stint, I am sure he will be a hungry boy but he assured me tonight at supper that the steroids weren't going to make him eat.
Sunday morning Carter had his last class for 1st communion. Arron and the boys met Carter and I at church and then we attended a church pancake breakfast afterwards. The kids enjoyed the outing and were enjoying some time at the play ground before they were chased in by rain. The afternoon followed with some friends/cousins over for a play date. The sand pile on the lot next door has provided hours of entertainment. Carter asked me today to call and find out when the pile was going to be moved. When I asked why he said it was because he wanted to move his treasurers before the pile was moved. Now what could be in there? We are careful to take the kids clothes off in the garage or mudroom, to shake them out before going into the wash machine and yet when I pulled out a pair of clean socks to put on Nathan today, there was still sand in it. The bright side is that it is sand and not clay or mud :).
Nathan had his treatment today. He was glad there were no leg needles today but still didn't want to be at the clinic. Nathan's counts have fallen, with his WBC at 1.83 and Neutrophils at 0.83. I wasn't anticipating they would be that low but considering the strong drugs he has received I shouldn't be surprised. He also started another 7 day round of the steroid dexamethasone tonight. Considering his appetite hasn't decreased since the last 7 day stint, I am sure he will be a hungry boy but he assured me tonight at supper that the steroids weren't going to make him eat.
Friday, May 22, 2009
ADI Days 11 & 12
I had the day off today so I got to go with Nathan and Shelley to the clinic. It was a quiet day at the clinic today as there was only one other little girl and her family in the pediatric area. Things went fairly smoothly today and yet it still took us til noon before Nathan was done. He had to get blood work first and his counts were way down since Tuesday. WBC was low at 2.67 with his Neutrophils being 1.48 of that. Nathan's Hemoglobin was just in the normal range at 106 and his Platelets also snuck into the normal zone at 192. Nathan got his leg needles with the usual level of fuss and resistance but when he finally gets it done he does so well. There is no crying or screaming anymore, he simply winces and might start talking fast but at the end he says that it didn't hurt. We looked forward to today's set of leg needles as Nathan won't have receive these again until June 22. So a nice long break ..... of course just when he starts to get used to them :). Since it was his sixth set of leg needles this phase, he automatically received plasma today. While Nathan was getting plasma he did wonderfully. He sat and made Shelley read comic book after comic book even though Shelley didn't like the books. Then we played Chutes and Ladders with the other little girls there and Nathan was very patient with the 2 year old Jessinda - it was good to see.
Nathan and G&G Miller went to pick up Carter after school and headed off to the park. They had a few issues that the boys could not resolve nicely themselves but I think a stop at the ice cream shop made a truce. Tonight, Grandpa Ray, Carter, Nathan, Uncle Darrell, Johnathan, Ella and I headed out to Bulls and Bikes at the Credit Union Center. It was pretty good and the bikes really held the kids interest - they were doing some crazy tricks. The bulls were also pretty good but Nathan wasn't much interested in them - he usually turned around and watched the crowd. Uncle Darrell did an awesome job of packing snacks for the kids so they were constantly munching on something to also keep them entertained. All in all it was a very nice evening.
Yesterday both Shelley and I were at work and so Nathan and Justin were at home with their grandparents. Nathan told me he had had a really good day when I got home so that was nice to hear. Carter had a soccer game that the whole family went to watch and then cousin Michelle came over for a late supper. We even talked her into staying for a game Kaiser. Michelle was just asking what a Kaiser hand was when I got a hand to bid and make one to win the game. First Kaiser hand in the new house.
We have a fairly busy weekend planned, as usual, and then Nathan has one more set of treatments on Monday. After Monday, he won't receive any treatment until June 8 so a nice break. He does start the steroids again Monday so needless to say there will be less sleep and a lot of eating.
Nathan and G&G Miller went to pick up Carter after school and headed off to the park. They had a few issues that the boys could not resolve nicely themselves but I think a stop at the ice cream shop made a truce. Tonight, Grandpa Ray, Carter, Nathan, Uncle Darrell, Johnathan, Ella and I headed out to Bulls and Bikes at the Credit Union Center. It was pretty good and the bikes really held the kids interest - they were doing some crazy tricks. The bulls were also pretty good but Nathan wasn't much interested in them - he usually turned around and watched the crowd. Uncle Darrell did an awesome job of packing snacks for the kids so they were constantly munching on something to also keep them entertained. All in all it was a very nice evening.
Yesterday both Shelley and I were at work and so Nathan and Justin were at home with their grandparents. Nathan told me he had had a really good day when I got home so that was nice to hear. Carter had a soccer game that the whole family went to watch and then cousin Michelle came over for a late supper. We even talked her into staying for a game Kaiser. Michelle was just asking what a Kaiser hand was when I got a hand to bid and make one to win the game. First Kaiser hand in the new house.
We have a fairly busy weekend planned, as usual, and then Nathan has one more set of treatments on Monday. After Monday, he won't receive any treatment until June 8 so a nice break. He does start the steroids again Monday so needless to say there will be less sleep and a lot of eating.
Wednesday, May 20, 2009
ADI 9-10
Well two more days have come and gone. Nathan finished the steroids on Monday and although not as ravenous as what he was, his appetite is still large and thinks about food on a regular basis. Nathan has gained roughly 6 pounds in the last week and his stomach and face have become rounder.
Yesterday went well. Nathan is feeling well. His blood counts were a pleasant surprise as his white cell counts were 6.66 with his Neutrophils at 4.78, lymphocytes at 1.4 and his monocytes at 0.4. With the stronger chemo drugs received last week we thought his counts would be low. The steroids are causing his counts to be higher than anticipated. Dr Ali's indicated he was pleased with how well Nathan looked and seemed when he examined him so that was nice to hear. Nathan had the usual wait to receive his treatment of Vincristine and Doxorubicin but had a full house at the clinic to keep him occupied. Esther is back from taking a break from the clinic so played games with Nathan and Michael, the brother of another little girl, Cathy, who had the same prognosis as Nathan. Nathan's other friend Michael was also there so the two connected on their DS's for a little while.
Today Nathan had another round of leg needles. All was good until we parked and were getting out of the vehicle when Nathan declared he wasn't ready to go in and wouldn't be - ever. A short discussion with Nathan determining he wanted to go to the Dollar Store after the visit to the clinic today, prompted his leaving the vehicle and entering the clinic. All was good until the nurse let Nathan know that the medication had arrived then again declared there was no way he was going to get the leg needles. He tucked his arms through the loops in the chair when I indicated I could/would carry him in and he said "not going to happen". When I asked him to come to my chair so that we could call Arron he figured I was trying to get him closer to the nurses room. I need some new tricks as the convincing him that he needs to get the needles done don't seem to be working as well. After a short discussion with Arron, Nathan determined it was okay to go in. I asked Arron what he said to Nathan to convince him to go in and it was all the same things I had said earlier. Nathan then declared that today he just had to listen to Dad and not Mom. I laughed and assured him he needed to listen to both Dad and Mom. Once in the room Nathan did really well getting the needles. While we waited out our time, Nathan again played games with Esther. She commented that Nathan had an abundance of energy for a child receiving chemo.
Since Nathan's counts had been good and was feeling well today, he was able to attend school in the afternoon. He was excited to show his classmates a new pair of fun glasses he had gotten from the Dollar Store. They are the ones with the big eye brows and nose. The kids thought they were great and Nathan loved making them laugh.
Tonight was a nice evening. After a later supper we bundled the kids up to go for a walk. Carter biked and Nathan and Justin rode in the wagon under blankets. We walked to the area where the lake is being developed and the kids were able to see the geese fly in and land. They thought it was pretty neat.
Tomorrow is another day at work and then the last set of leg needles for this round is Friday. If all stays on schedule Nathan (and his parents) will have a break from the leg needles till June 22! Hurray!
Yesterday went well. Nathan is feeling well. His blood counts were a pleasant surprise as his white cell counts were 6.66 with his Neutrophils at 4.78, lymphocytes at 1.4 and his monocytes at 0.4. With the stronger chemo drugs received last week we thought his counts would be low. The steroids are causing his counts to be higher than anticipated. Dr Ali's indicated he was pleased with how well Nathan looked and seemed when he examined him so that was nice to hear. Nathan had the usual wait to receive his treatment of Vincristine and Doxorubicin but had a full house at the clinic to keep him occupied. Esther is back from taking a break from the clinic so played games with Nathan and Michael, the brother of another little girl, Cathy, who had the same prognosis as Nathan. Nathan's other friend Michael was also there so the two connected on their DS's for a little while.
Today Nathan had another round of leg needles. All was good until we parked and were getting out of the vehicle when Nathan declared he wasn't ready to go in and wouldn't be - ever. A short discussion with Nathan determining he wanted to go to the Dollar Store after the visit to the clinic today, prompted his leaving the vehicle and entering the clinic. All was good until the nurse let Nathan know that the medication had arrived then again declared there was no way he was going to get the leg needles. He tucked his arms through the loops in the chair when I indicated I could/would carry him in and he said "not going to happen". When I asked him to come to my chair so that we could call Arron he figured I was trying to get him closer to the nurses room. I need some new tricks as the convincing him that he needs to get the needles done don't seem to be working as well. After a short discussion with Arron, Nathan determined it was okay to go in. I asked Arron what he said to Nathan to convince him to go in and it was all the same things I had said earlier. Nathan then declared that today he just had to listen to Dad and not Mom. I laughed and assured him he needed to listen to both Dad and Mom. Once in the room Nathan did really well getting the needles. While we waited out our time, Nathan again played games with Esther. She commented that Nathan had an abundance of energy for a child receiving chemo.
Since Nathan's counts had been good and was feeling well today, he was able to attend school in the afternoon. He was excited to show his classmates a new pair of fun glasses he had gotten from the Dollar Store. They are the ones with the big eye brows and nose. The kids thought they were great and Nathan loved making them laugh.
Tonight was a nice evening. After a later supper we bundled the kids up to go for a walk. Carter biked and Nathan and Justin rode in the wagon under blankets. We walked to the area where the lake is being developed and the kids were able to see the geese fly in and land. They thought it was pretty neat.
Tomorrow is another day at work and then the last set of leg needles for this round is Friday. If all stays on schedule Nathan (and his parents) will have a break from the leg needles till June 22! Hurray!
Monday, May 18, 2009
ADI Days 6-8
We hope that you all had a good long weekend as our little family had a pretty good one. We knocked about the house and the City for the whole weekend - we didn't stray too far.
Friday we went for a bike ride to find the park in our area. Yup, I said "park" as there has only been one built in all of Stonebridge. It was cold out but the kids managed to play there for 15 minutes or so. Carter liked the ride back as we went "off-roading", which is easy to do around here since there aren't many roads. Nathan was feeling great so he chose to ride in the Chariot and have his Dad drag him around. He actually fell asleep on the ride back and had a quick cat nap.
Sunday, we went to church and you could tell Nathan wasn't quite himself. He was very subdued and either sat on me or tried to get me to hold him when we were standing up; and, for once, he didn't get into any trouble! He appeared to improve in the afternoon as we went out to Crickle Creek and they had a blast. We ran into some daycare friends out there, Jenna and Ryan, and they, along with Carter and Nathan, took advantage of the warm weather and were in and out of all the jumping areas. It was Justin's turn to be subdued as he either sat on Shelley or myself the whole time. Darrell, Pam and the kids rode over later and again the kids played well. They had the little quads out and were trying to do a bunch more offroading with them.
Monday, we had to go into the hospital for leg needles. Shelley phoned first to make sure they were ready for us and got a really rude song and dance from the ward head nurse. She was grilling Shelley on why we didn't go to the Cancer Center, or just wait til tomorrow since they didn't have any extra staff on. It was very frustrating the way these groups seem to (not) work together. Anyway, we went for our time and went straight up to the ward. The ward head nurse was not there, which was nice, and the nurse they we did have was Christina who had looked after Nathan on a previous stay there. Christina had not given those types of needles before but Nathan guided her through it really well. ;-) He told her what to do next, when to do it and how to do it so I actually do think it was helpful for Christina. Nathan had a very good experience with her today. On the first needle he started to howl but turned it into a song instead and there was not a peep out of him on he second one. He made sure to tell Shelley and I that they didn't hurt at all. I've said it before but it bears repeating - he is one tough little guy. After we were done the ward head nurse came up and said "so this is the guy". Then she asked when we were going to get the needles and we said that he was already done. She replied that she didn't hear any screaming which kind of smacked us the wrong way. We simply replied that Christina did a wonderful job and Nathan was a tough guy and there was nothing to scream about. That seemed to satisfy her but then she wanted us to see Dr Ali. Since we were going to see him tomorrow we didn't bother to wait for him and we headed down to the playroom for a game of Spongebob Spoons (we have to play it every time we go there). We were released after 45 minutes and on the whole it was our best hospital visit and would have been near perfect if the head nurse would have been different.
Nathan has had an off evening as well. He has not had much energy and he keeps complaining that his legs hurt. Hopefully it is nothing serious but it was not like him. We are simply hoping that it is part of the steroid effect as well. The hunger has kicked in after 7 days of steroids, with this morning being the last dose. Breakfast was 3 eggos, a bowl of cereal, then a poached egg and a toast. He actually eats quite often in the day now and Shelley commented that it seems like we are either cooking, eating or washing dishes steady for the last two days. I guess it is good practice for teenagers!
Shelley and Nathan will be back at the Cancer Center tomorrow for some Doxorubicin and Vincristine. He handled those OK last week so hopefully he handles them OK again. I'm sure he will be excited to see the red pee again. Nathan also has to go to the clinic on Wed and Fri for leg needles so it is a lot of trips this week.
Friday we went for a bike ride to find the park in our area. Yup, I said "park" as there has only been one built in all of Stonebridge. It was cold out but the kids managed to play there for 15 minutes or so. Carter liked the ride back as we went "off-roading", which is easy to do around here since there aren't many roads. Nathan was feeling great so he chose to ride in the Chariot and have his Dad drag him around. He actually fell asleep on the ride back and had a quick cat nap.
Sunday, we went to church and you could tell Nathan wasn't quite himself. He was very subdued and either sat on me or tried to get me to hold him when we were standing up; and, for once, he didn't get into any trouble! He appeared to improve in the afternoon as we went out to Crickle Creek and they had a blast. We ran into some daycare friends out there, Jenna and Ryan, and they, along with Carter and Nathan, took advantage of the warm weather and were in and out of all the jumping areas. It was Justin's turn to be subdued as he either sat on Shelley or myself the whole time. Darrell, Pam and the kids rode over later and again the kids played well. They had the little quads out and were trying to do a bunch more offroading with them.
Monday, we had to go into the hospital for leg needles. Shelley phoned first to make sure they were ready for us and got a really rude song and dance from the ward head nurse. She was grilling Shelley on why we didn't go to the Cancer Center, or just wait til tomorrow since they didn't have any extra staff on. It was very frustrating the way these groups seem to (not) work together. Anyway, we went for our time and went straight up to the ward. The ward head nurse was not there, which was nice, and the nurse they we did have was Christina who had looked after Nathan on a previous stay there. Christina had not given those types of needles before but Nathan guided her through it really well. ;-) He told her what to do next, when to do it and how to do it so I actually do think it was helpful for Christina. Nathan had a very good experience with her today. On the first needle he started to howl but turned it into a song instead and there was not a peep out of him on he second one. He made sure to tell Shelley and I that they didn't hurt at all. I've said it before but it bears repeating - he is one tough little guy. After we were done the ward head nurse came up and said "so this is the guy". Then she asked when we were going to get the needles and we said that he was already done. She replied that she didn't hear any screaming which kind of smacked us the wrong way. We simply replied that Christina did a wonderful job and Nathan was a tough guy and there was nothing to scream about. That seemed to satisfy her but then she wanted us to see Dr Ali. Since we were going to see him tomorrow we didn't bother to wait for him and we headed down to the playroom for a game of Spongebob Spoons (we have to play it every time we go there). We were released after 45 minutes and on the whole it was our best hospital visit and would have been near perfect if the head nurse would have been different.
Nathan has had an off evening as well. He has not had much energy and he keeps complaining that his legs hurt. Hopefully it is nothing serious but it was not like him. We are simply hoping that it is part of the steroid effect as well. The hunger has kicked in after 7 days of steroids, with this morning being the last dose. Breakfast was 3 eggos, a bowl of cereal, then a poached egg and a toast. He actually eats quite often in the day now and Shelley commented that it seems like we are either cooking, eating or washing dishes steady for the last two days. I guess it is good practice for teenagers!
Shelley and Nathan will be back at the Cancer Center tomorrow for some Doxorubicin and Vincristine. He handled those OK last week so hopefully he handles them OK again. I'm sure he will be excited to see the red pee again. Nathan also has to go to the clinic on Wed and Fri for leg needles so it is a lot of trips this week.
Friday, May 15, 2009
ADI Day 4 & 5
Snow, snow and more snow was what we saw yesterday. It was still here this morning but didn't take long for it to be gone. We are starting to wonder if spring will ever arrive or if we are going to jump straight to summer.
Nathan had a good day yesterday. I had to work so he was home with Justin and Grandma Elsie. Today was an emotional day for Nathan. The steroids have really adjusted Nathan's hormones. He was very contemplative and reminiscent today. He asked me if I remembered several past events and how much fun they were. Nathan also mentioned that he missed the old house. What he misses is the toys being readily available and under his feet. Unlike here were he needs to go get them to bring to play. Hopefully this will pass.
On the way to the clinic I realized we packed everything but his DS. When asked if he wanted me to go home to get it he said no. So onward we went. Nathan was the only patient this morning so it was extremely quiet. But once we walked into the nurses room, he couldn't proceed without his DS. I tried to convince him that he could do this and he said he couldn't. A kind gentleman even tried to offer Nathan his watch so that Nathan could time the nurses but that didn't fly. So we asked the nurses if there would be any problems with us running back to get the DS and they said no. They were extremely understanding.
The bright side to forgetting the DS was that we stopped at Tim Horton's to get a hot chocolate for Nathan, a coffee for me and muffins for the nurses.
Nathan didn't want to get the leg needles, even with his DS in hand. As soon as he heard needles when in the nurses room he tried to walk out as he started crying but my arms greeted him into a hug. It took only a little convincing and he was good to go. It is strange though how some days it just doesn't hurt and there are no marks left. Today it hurt, he cried and there were marks at the site of the injection. Once this was done he received plasma and to comfort him, since he was missing Arron lots today, we picked Arron up for lunch. We then picked up a few groceries and stopped at the library. We used to go to the library regularly with frequent trips to the Tuesday night story time. Since Nathan got sick we haven't been to the library so today we stopped. I never knew Nathan enjoyed going until today.
Nathan has reverted back to the "I am not staying without you" and "I go where you go" temperament. His stomach seems most queasy at supper time. Nathan did eat well today but skipped supper again. It could have been due to the huge bowl of blueberries he ate around 4pm.
We took the boys for a bike ride tonight to find the parks in our area. Nathan and Justin rode in the bike trailer. With all the open fields and designated roads still dirt, Carter thought it was great to go "off roading". The weekend looks to be quiet. We hope everyone has a safe and relaxing long weekend.
Nathan had a good day yesterday. I had to work so he was home with Justin and Grandma Elsie. Today was an emotional day for Nathan. The steroids have really adjusted Nathan's hormones. He was very contemplative and reminiscent today. He asked me if I remembered several past events and how much fun they were. Nathan also mentioned that he missed the old house. What he misses is the toys being readily available and under his feet. Unlike here were he needs to go get them to bring to play. Hopefully this will pass.
On the way to the clinic I realized we packed everything but his DS. When asked if he wanted me to go home to get it he said no. So onward we went. Nathan was the only patient this morning so it was extremely quiet. But once we walked into the nurses room, he couldn't proceed without his DS. I tried to convince him that he could do this and he said he couldn't. A kind gentleman even tried to offer Nathan his watch so that Nathan could time the nurses but that didn't fly. So we asked the nurses if there would be any problems with us running back to get the DS and they said no. They were extremely understanding.
The bright side to forgetting the DS was that we stopped at Tim Horton's to get a hot chocolate for Nathan, a coffee for me and muffins for the nurses.
Nathan didn't want to get the leg needles, even with his DS in hand. As soon as he heard needles when in the nurses room he tried to walk out as he started crying but my arms greeted him into a hug. It took only a little convincing and he was good to go. It is strange though how some days it just doesn't hurt and there are no marks left. Today it hurt, he cried and there were marks at the site of the injection. Once this was done he received plasma and to comfort him, since he was missing Arron lots today, we picked Arron up for lunch. We then picked up a few groceries and stopped at the library. We used to go to the library regularly with frequent trips to the Tuesday night story time. Since Nathan got sick we haven't been to the library so today we stopped. I never knew Nathan enjoyed going until today.
Nathan has reverted back to the "I am not staying without you" and "I go where you go" temperament. His stomach seems most queasy at supper time. Nathan did eat well today but skipped supper again. It could have been due to the huge bowl of blueberries he ate around 4pm.
We took the boys for a bike ride tonight to find the parks in our area. Nathan and Justin rode in the bike trailer. With all the open fields and designated roads still dirt, Carter thought it was great to go "off roading". The weekend looks to be quiet. We hope everyone has a safe and relaxing long weekend.
Wednesday, May 13, 2009
ADI Day 3
Last night was another restless night. Between the extreme wind with sleet hammering the house and Nathan up often to pee there was no long periods of sleep, we are hoping there is better/longer sleep tonight.
Nathan did not want to get out of bed this morning. Ironically at 6am he wanted to be up for the day but when told he needed a 7 on his clock, he fell back to sleep until woken around 8am. He was pretty determined that he wasn't going to the clinic and that he wasn't getting any more leg needles. I gave him some time to think about it and he called me back up to discuss. He was very rational this morning and understood why he had to go when I explained it to him. He concluded that it wouldn't hurt if he didn't think about it.
The wait at the clinic was long again. Our appointment was for 9am. 11am was when they were ready for us. A few more children were brought for emergency examinations. One particular little boy who was to be done having treatment completely this fall, had a port that became faulty so now will undergo surgery to remove the one he has and to provide him with a new one. These issues that we keep seeing with other children serve to remind us just how many *unexpected* things can go wrong.
When called to the room we had nurse Andrea who is replacing nurse Cathy until she returns from sick leave. Nathan was awesome today. He listened when told to pick a leg to start on. He then did his counting and breathing extremely well and focused. There were no tears, no fight and at the end proclaimed "that didn't even hurt". But he controlled the situation, telling Andrea when he was ready and by counting down to the needle.
After about a 40 minute wait we decided to head home. Nathan has been complaining of stomach pain since Monday and is more sensitive to smells making his appetite drop. And no, the steroids have not yet kicked in, with the exception of the mood swings; unfortunately, those are in full force. We were home for lunch and then when Carter needed to go back, he decided to come with me to run some errands. I enjoy it when he does as it is an easy way to get him to nap. So an hour later, he was a little more refreshed. When we picked Carter up from school and returned home he wanted to stay outside so we did. It wasn't exactly balmy out there but at least the kids had some fresh air.
Again Nathan deferred supper. I think the smells of cooking is what gets to him. So a little later, he had 2 bowls of porridge and half a banana. We can see that the mouth sores are also starting so will encourage more yogurt tomorrow to help with those. He drank a tonne of milk today so am sure will be another night of steady trips to the bathroom.
p.s. The annual Miller\Mcleod Hockey Draft is back under way. Things were hectic before the start of playoffs so we waited until the first round was done and let the kids pick their teams. Ella has started off with a huge lead having all the Washington and Anaheim top players, but if Detroit pulls through the boys might have a chance of catching her. Check it out in the links section or here
Nathan did not want to get out of bed this morning. Ironically at 6am he wanted to be up for the day but when told he needed a 7 on his clock, he fell back to sleep until woken around 8am. He was pretty determined that he wasn't going to the clinic and that he wasn't getting any more leg needles. I gave him some time to think about it and he called me back up to discuss. He was very rational this morning and understood why he had to go when I explained it to him. He concluded that it wouldn't hurt if he didn't think about it.
The wait at the clinic was long again. Our appointment was for 9am. 11am was when they were ready for us. A few more children were brought for emergency examinations. One particular little boy who was to be done having treatment completely this fall, had a port that became faulty so now will undergo surgery to remove the one he has and to provide him with a new one. These issues that we keep seeing with other children serve to remind us just how many *unexpected* things can go wrong.
When called to the room we had nurse Andrea who is replacing nurse Cathy until she returns from sick leave. Nathan was awesome today. He listened when told to pick a leg to start on. He then did his counting and breathing extremely well and focused. There were no tears, no fight and at the end proclaimed "that didn't even hurt". But he controlled the situation, telling Andrea when he was ready and by counting down to the needle.
After about a 40 minute wait we decided to head home. Nathan has been complaining of stomach pain since Monday and is more sensitive to smells making his appetite drop. And no, the steroids have not yet kicked in, with the exception of the mood swings; unfortunately, those are in full force. We were home for lunch and then when Carter needed to go back, he decided to come with me to run some errands. I enjoy it when he does as it is an easy way to get him to nap. So an hour later, he was a little more refreshed. When we picked Carter up from school and returned home he wanted to stay outside so we did. It wasn't exactly balmy out there but at least the kids had some fresh air.
Again Nathan deferred supper. I think the smells of cooking is what gets to him. So a little later, he had 2 bowls of porridge and half a banana. We can see that the mouth sores are also starting so will encourage more yogurt tomorrow to help with those. He drank a tonne of milk today so am sure will be another night of steady trips to the bathroom.
p.s. The annual Miller\Mcleod Hockey Draft is back under way. Things were hectic before the start of playoffs so we waited until the first round was done and let the kids pick their teams. Ella has started off with a huge lead having all the Washington and Anaheim top players, but if Detroit pulls through the boys might have a chance of catching her. Check it out in the links section or here
Tuesday, May 12, 2009
ADI Day 2
I think today went as well as we could have expected. Nathan had a pretty unsettled night. He was up often to go to the washroom and a couple of times just to say he wasn't feeling well. Today was also the first time that Shelley was not home the day after a major treatment. Nathan had to call her a couple times today just to let her know he missed her and that he wanted her at home. That made Shelley's day a little more unsettled as well.
I came home early today as I also was not feeling well and I thought Nathan and I could not feel well together. When I got home Justin had not napped either so we all headed up to our bedroom and laid down. The kids were watching a TV show (bribe to get them up there) while I tried to sleep. I woke up in a bit to both of boys sleeping so I shut off the TV and went back to sleep. Nathan didn't last much longer and so I got up after him - we had about an hour sleep. Justin stayed up there for another hour after us. He woke up crabby just as we were trying to get the boys to have supper. Nathan was telling me that he was feeling good enough to go to soccer tonight but then he turned around and said that he didn't feel good enough to eat. So, we compromised and Nathan didn't have supper and he was just going to watch soccer tonight.
Shelley headed to soccer with Nathan and Justin and I took Carter to his baseball practice. Shelley said that the watching did not last long and Nathan was a little more rammy than usual tonight while playing but that he did have fun. Carter really enjoyed his ball practice tonight and was in a great mood for the rest of the evening. All three boys went down fairly easy tonight, hopefully they all stay there all night!
I came home early today as I also was not feeling well and I thought Nathan and I could not feel well together. When I got home Justin had not napped either so we all headed up to our bedroom and laid down. The kids were watching a TV show (bribe to get them up there) while I tried to sleep. I woke up in a bit to both of boys sleeping so I shut off the TV and went back to sleep. Nathan didn't last much longer and so I got up after him - we had about an hour sleep. Justin stayed up there for another hour after us. He woke up crabby just as we were trying to get the boys to have supper. Nathan was telling me that he was feeling good enough to go to soccer tonight but then he turned around and said that he didn't feel good enough to eat. So, we compromised and Nathan didn't have supper and he was just going to watch soccer tonight.
Shelley headed to soccer with Nathan and Justin and I took Carter to his baseball practice. Shelley said that the watching did not last long and Nathan was a little more rammy than usual tonight while playing but that he did have fun. Carter really enjoyed his ball practice tonight and was in a great mood for the rest of the evening. All three boys went down fairly easy tonight, hopefully they all stay there all night!
Monday, May 11, 2009
ADI Day 1
ADI stands for Augmented Delayed Intensification and Nathan's counts were high enough to start this new phase today. We had to be at RUH for 8:15 am and were to report to Pediatric Outpatients for Nathan's echo cardiogram. We were surprised when we get there at 8:14 and it was still closed. We wandered down to regular registration and they did not have him on their list either. They suggested we head back to peds as they should be open. When we got back there, they were half open (gate was halfway up), so Nathan stuck his head underneath. They asked us if we had any doctors orders or knew which doctor we were to see as they didn't have Nathan on their list either. Just as we were getting very confused, Bob came out a door and asked if we were Nathan Miller. We said yes and we were to follow him - finally someone who knew something about what was going on! Bob was the technician who ran the echo cardiogram and he did great with Nathan. Nathan laid still while Bob got all the pictures he needed of Nathan's heart. This process was to baseline Nathan's heart function to determine late if the Doxorubicin Nathan started today did any harm to Nathan's heart.
After the echo cardiogram Shelley and I put Emla all over Nathan (actually just his port, back and his legs) and we headed off to the Cancer Center. Once we got there the nurses informed us that Nathan was due to have his LP at 9:45 but he had to have his blood test results back first. We told them that due to the echo cardiogram, we just put the Emla cream on Nathan's port 15 minutes ago and we'd have to wait for the freezing. They did not appear to be too impressed as they then told us that they had a really busy day today. They were essentially running two clinics as a doctor from Winnipeg was in to see all the kids that required bone marrow transplants. Regardless, we had to wait for the freezing to take effect so back to the play room we went. Nathan was pleased that his buddy Michael was there today. They both started to catch up on everything DS that they had done since the last time the two of them saw each other. Then Nathan remembered that he and Shelley had bought some Playstation 2 games to bring to the clinic but they left them at home. Nathan then badgered his mother until she left for home to go get them.
Dr. Ali then came in to say he wanted to do Nathan's physical first as they were going to be pressed for time so off Nathan and I went. The physical went very well as Nathan was generally listening to Dr Ali. After he was done, he sent nurse Heather into see us to get the blood work going. The port went in lickety split and blood was drawn and off to the lab. That was shortly before 9:30am. Nurse Jan had phone anaesthesiology to delay them for a bit and they said they would be on standby so back to the play room we went to wait for blood results.
They were not kidding when they said it would be a busy day! There were 6 or 7 kids in the playroom (with their accompanying adults) and a few more older kids out in the general waiting room. It got very zoo like and loud in there. Nathan and Michael kept playing together oblivious to everything else going on as we waited for the blood work. We then waited some more. And finally, after some more waiting we got the blood test results just before 11am and Nathan was good to go. Nathan's white blood cell count was a little low at 3.55 with 2.18 of that being Neutrophils. His hemoglobin and platelets were normal at 106 and 349 respectively. After they gave us the results they said they phoned to anaesthesiology to get the green men down there and so we waited some more for them. As it was getting closer to noon we were getting concerned as Nathan's Emla cream was on going on four hours and that is the end of its effectiveness but the green guys went walking by at about 11:45. Nathan didn't wait for them to call him as he followed them down the hall to the procedure room. Shelley slowed him down a bit by making him go to the bathroom but then we was right back to the room and climbed up on the bed - he was ready for sleep! He put on his peck the penguin mask and let them hook up all the monitors, the only hold up was that Dr Ali and a couple of the medications were not ready yet - so guess what.... we waited a bit more. Finally, Nathan kicked me out of the room and Shelley not long after; I never did see Dr Ali go into the room.
Shelley and I took that opportunity to go and get some soup to eat from the food cart. On days when Nathan has to fast, he makes sure that Shelley and I fast as well so we were pretty hungry too. About 15 minutes later they came to tell us that they were done and Nathan was still sleeping but starting to wake up and they would call us when he woke up ... after waiting for another 20 mins we finally went looking for him. Nurse Heather was trying to get someone to come get us as she was supporting Nathan as he was getting up very very woozy from his sleep. We were told that the Erwinia L-asparaginase was a little late coming so they had to give Nathan and extra shot to keep him sleeping a little longer so that he got his leg pokes while he was out. I'm not sure if it was the extra shot that did it but Nathan was very out of it! He wanted to head back to the playroom so that he could eat so I carried him there. His head was wobbling back and forth kind of like a bobble head doll and he wasn't very coherent in his speech; it was a little humorous and scary at the same time. He went straight for the marshmallows he and Shelley had packed that morning. He shared those around the room nicely as he sat on me getting his wits back.
Shortly after that, Heather came in with his ondansetron, which is the anti-nausea drug. After that was done, Nathan had to head into the outpatient room to get hooked up to the electronic IV to get the Doxorubicin. The Dox is a dark red colour and has a very interesting side effect sheet. One of the ones that caught Nathan's attention is that it will make his pee red. It is not blood in his urine so you aren't supposed to be alarmed, it is normal for that drug.
It took the better part of an hour to get the Dox pumped into him and then we had to wait a little while longer before they de-accessed Nathan. Again, the de-accessing went fairly smoothly and we were soon free to go. All that took only til 3pm and as Shelley loves to point out; we were the first ones into the Cancer center today and we were the last ones to leave (not quite though because another little girl came back right before we left). On the way out we had to go get two prescriptions, one for Ondansetron to help with the nausea for the next couple of days and then one for the steroid Dexamethasone that he gets to take for the next seven days. Nathan's appetite had already been quite large, so I'm guessing seven days of steroids might get him back to insatiable.
We went to SportChek on the way home as Nathan was wanting some new soccer shin pads. As soon as we got there he had to go to the bathroom so off he and Shelley went. As soon as he came back he made sure to tell me that his pee was very red - well they got that side effect right! Nathan started to feel a little off on the way home, and once we got home he had some couch and TV time. He didn't come eat supper with us either as he was feeling a little nauseous. After supper Justin and I went out to play in the garage and not long after Nathan had Shelley bring him out too. We had a nice evening outside as the weather was beautiful and the kids had fun roaming around. After that it was in for baths to get cleaned up and as Carter and Justin were going to bed Nathan decided he was ready to eat. Shelley made him a couple of grilled cheese sandwiches and they went down fairly quickly. All three boys then went to bed fairly well tonight.
Well that was one LOOONG post, if you read all the way to the end - congratulations. Nathan has to back to the clinic on Wednesday and Friday for the leg pokes (and plasma on Friday). Hopefully he continues to feel well tomorrow.
After the echo cardiogram Shelley and I put Emla all over Nathan (actually just his port, back and his legs) and we headed off to the Cancer Center. Once we got there the nurses informed us that Nathan was due to have his LP at 9:45 but he had to have his blood test results back first. We told them that due to the echo cardiogram, we just put the Emla cream on Nathan's port 15 minutes ago and we'd have to wait for the freezing. They did not appear to be too impressed as they then told us that they had a really busy day today. They were essentially running two clinics as a doctor from Winnipeg was in to see all the kids that required bone marrow transplants. Regardless, we had to wait for the freezing to take effect so back to the play room we went. Nathan was pleased that his buddy Michael was there today. They both started to catch up on everything DS that they had done since the last time the two of them saw each other. Then Nathan remembered that he and Shelley had bought some Playstation 2 games to bring to the clinic but they left them at home. Nathan then badgered his mother until she left for home to go get them.
Dr. Ali then came in to say he wanted to do Nathan's physical first as they were going to be pressed for time so off Nathan and I went. The physical went very well as Nathan was generally listening to Dr Ali. After he was done, he sent nurse Heather into see us to get the blood work going. The port went in lickety split and blood was drawn and off to the lab. That was shortly before 9:30am. Nurse Jan had phone anaesthesiology to delay them for a bit and they said they would be on standby so back to the play room we went to wait for blood results.
They were not kidding when they said it would be a busy day! There were 6 or 7 kids in the playroom (with their accompanying adults) and a few more older kids out in the general waiting room. It got very zoo like and loud in there. Nathan and Michael kept playing together oblivious to everything else going on as we waited for the blood work. We then waited some more. And finally, after some more waiting we got the blood test results just before 11am and Nathan was good to go. Nathan's white blood cell count was a little low at 3.55 with 2.18 of that being Neutrophils. His hemoglobin and platelets were normal at 106 and 349 respectively. After they gave us the results they said they phoned to anaesthesiology to get the green men down there and so we waited some more for them. As it was getting closer to noon we were getting concerned as Nathan's Emla cream was on going on four hours and that is the end of its effectiveness but the green guys went walking by at about 11:45. Nathan didn't wait for them to call him as he followed them down the hall to the procedure room. Shelley slowed him down a bit by making him go to the bathroom but then we was right back to the room and climbed up on the bed - he was ready for sleep! He put on his peck the penguin mask and let them hook up all the monitors, the only hold up was that Dr Ali and a couple of the medications were not ready yet - so guess what.... we waited a bit more. Finally, Nathan kicked me out of the room and Shelley not long after; I never did see Dr Ali go into the room.
Shelley and I took that opportunity to go and get some soup to eat from the food cart. On days when Nathan has to fast, he makes sure that Shelley and I fast as well so we were pretty hungry too. About 15 minutes later they came to tell us that they were done and Nathan was still sleeping but starting to wake up and they would call us when he woke up ... after waiting for another 20 mins we finally went looking for him. Nurse Heather was trying to get someone to come get us as she was supporting Nathan as he was getting up very very woozy from his sleep. We were told that the Erwinia L-asparaginase was a little late coming so they had to give Nathan and extra shot to keep him sleeping a little longer so that he got his leg pokes while he was out. I'm not sure if it was the extra shot that did it but Nathan was very out of it! He wanted to head back to the playroom so that he could eat so I carried him there. His head was wobbling back and forth kind of like a bobble head doll and he wasn't very coherent in his speech; it was a little humorous and scary at the same time. He went straight for the marshmallows he and Shelley had packed that morning. He shared those around the room nicely as he sat on me getting his wits back.
Shortly after that, Heather came in with his ondansetron, which is the anti-nausea drug. After that was done, Nathan had to head into the outpatient room to get hooked up to the electronic IV to get the Doxorubicin. The Dox is a dark red colour and has a very interesting side effect sheet. One of the ones that caught Nathan's attention is that it will make his pee red. It is not blood in his urine so you aren't supposed to be alarmed, it is normal for that drug.
It took the better part of an hour to get the Dox pumped into him and then we had to wait a little while longer before they de-accessed Nathan. Again, the de-accessing went fairly smoothly and we were soon free to go. All that took only til 3pm and as Shelley loves to point out; we were the first ones into the Cancer center today and we were the last ones to leave (not quite though because another little girl came back right before we left). On the way out we had to go get two prescriptions, one for Ondansetron to help with the nausea for the next couple of days and then one for the steroid Dexamethasone that he gets to take for the next seven days. Nathan's appetite had already been quite large, so I'm guessing seven days of steroids might get him back to insatiable.
We went to SportChek on the way home as Nathan was wanting some new soccer shin pads. As soon as we got there he had to go to the bathroom so off he and Shelley went. As soon as he came back he made sure to tell me that his pee was very red - well they got that side effect right! Nathan started to feel a little off on the way home, and once we got home he had some couch and TV time. He didn't come eat supper with us either as he was feeling a little nauseous. After supper Justin and I went out to play in the garage and not long after Nathan had Shelley bring him out too. We had a nice evening outside as the weather was beautiful and the kids had fun roaming around. After that it was in for baths to get cleaned up and as Carter and Justin were going to bed Nathan decided he was ready to eat. Shelley made him a couple of grilled cheese sandwiches and they went down fairly quickly. All three boys then went to bed fairly well tonight.
Well that was one LOOONG post, if you read all the way to the end - congratulations. Nathan has to back to the clinic on Wednesday and Friday for the leg pokes (and plasma on Friday). Hopefully he continues to feel well tomorrow.
Saturday, May 9, 2009
Last Days of AIM
(Two posts in one so if you haven't read lately, check the post below too)
We are winding down this phase and it has been really nice. We haven't had to go to the Cancer Center for two weeks and the family had some normalcy. Nathan has gone to school this week, we've been out and about, and treating things just as we normally would. I talked with Nathan tonight about starting treatments again on Monday and he seemed OK with it. He asked which ones we'd be doing and really wanted to know if he was getting leg needles. I told him that he would be, but since he also had to have a back needle they would be putting him to sleep. For some reason he is OK with going to sleep to get stuff done - I guess why not?
We've had a pretty good weekend. Shelley was home with the boys on Friday and they had a really good day and we also had a pretty good evening. Auntie Lorrie came over for supper, and then the boys and I had the night to ourselves. Today we even went out to Fudruckers for supper with Pam and their kids and then Shelley, Nathan, Ella, Justin and I went minigolfing. The kids had a blast, they are getting better at following the rules and doing it right. Carter and Johnathan had a birthday party to go to which is why they weren't golfing.
Tomorrow is Mother's day so happy Mother's day to all you mothers out there! I hope we are going to have a good day. Carter has first communion classes in the morning and then we'll do church at 11:30. There is a tea at Shelley's grandma's home which Shelley might go to and then we will do Mother's day supper with the Mcleods. Should be good as long as the boys cooperate!
One quick story for you, we told you about how Justin banged his head well he did end up with a big solid goose egg. Last night, he try to reason with us that he couldn't go to bed because his head hurt when he laid down. We tried to convince him to lay on his side as he ALWAYS does but he wanted to lay on his back and then his head hurt - what a goof.
As I've mentioned, Monday will be a big day for us at the Cancer Center. Nathan starts a new drug called Doxorubicin and evidently it is a nasty one with various side affects. One of the side effects is that it can affect your heart so Nathan has to go for an echocardiogram first to make sure his heart is in good shape before they start and get a baseline to compare it to after he's had that drug a few times. He also gets the Cyclophospamide which is the one that makes him nauseous. We then get to complement those with the Vincristine and the LP to get intrathecal Methotrexate. To finish off the Monday treatment, Nathan will also get his two shots to the leg for the Erwinia L-asparaginase. Whew! Nathan will be tired after that day, hopefully his body can handle everything OK. I believe that is why he got two weeks off, to rest and recover before this phase starts. This phase is called Augmented Delayed Instensification I and is also eight weeks long with fairly steady treaments - multiple times per week.
Take care everyone, and Happy Mothers Day again!
We are winding down this phase and it has been really nice. We haven't had to go to the Cancer Center for two weeks and the family had some normalcy. Nathan has gone to school this week, we've been out and about, and treating things just as we normally would. I talked with Nathan tonight about starting treatments again on Monday and he seemed OK with it. He asked which ones we'd be doing and really wanted to know if he was getting leg needles. I told him that he would be, but since he also had to have a back needle they would be putting him to sleep. For some reason he is OK with going to sleep to get stuff done - I guess why not?
We've had a pretty good weekend. Shelley was home with the boys on Friday and they had a really good day and we also had a pretty good evening. Auntie Lorrie came over for supper, and then the boys and I had the night to ourselves. Today we even went out to Fudruckers for supper with Pam and their kids and then Shelley, Nathan, Ella, Justin and I went minigolfing. The kids had a blast, they are getting better at following the rules and doing it right. Carter and Johnathan had a birthday party to go to which is why they weren't golfing.
Tomorrow is Mother's day so happy Mother's day to all you mothers out there! I hope we are going to have a good day. Carter has first communion classes in the morning and then we'll do church at 11:30. There is a tea at Shelley's grandma's home which Shelley might go to and then we will do Mother's day supper with the Mcleods. Should be good as long as the boys cooperate!
One quick story for you, we told you about how Justin banged his head well he did end up with a big solid goose egg. Last night, he try to reason with us that he couldn't go to bed because his head hurt when he laid down. We tried to convince him to lay on his side as he ALWAYS does but he wanted to lay on his back and then his head hurt - what a goof.
As I've mentioned, Monday will be a big day for us at the Cancer Center. Nathan starts a new drug called Doxorubicin and evidently it is a nasty one with various side affects. One of the side effects is that it can affect your heart so Nathan has to go for an echocardiogram first to make sure his heart is in good shape before they start and get a baseline to compare it to after he's had that drug a few times. He also gets the Cyclophospamide which is the one that makes him nauseous. We then get to complement those with the Vincristine and the LP to get intrathecal Methotrexate. To finish off the Monday treatment, Nathan will also get his two shots to the leg for the Erwinia L-asparaginase. Whew! Nathan will be tired after that day, hopefully his body can handle everything OK. I believe that is why he got two weeks off, to rest and recover before this phase starts. This phase is called Augmented Delayed Instensification I and is also eight weeks long with fairly steady treaments - multiple times per week.
Take care everyone, and Happy Mothers Day again!
Wednesday, May 6, 2009
AIM 54-55
(Shelley had the post below all typed up and read to go, but evidently I was supposed to read it and hit submit.... OK submit)
Well its back to work and all is going well. Nathan and Justin spent Tuesday with Grandma and Grandpa Miller while Carter was at school. Tuesday evening was spent at the soccer field and playground until high winds and rain chased us home. Nathan had his first soccer game and although he didn't score any goals he was a great assistant and digger. His running isn't the same as it used to be but we are hoping that will change once treatment is done.
Today felt great to be able to take Nathan and Carter to school. Grandma Elsie was here with Justin and picked the boys up after school. They were able to stay for lunch today as their classes were busing to another school to watch a play. As much as I wanted to wrap Nathan in bubble wrap, he had fun going with his class. His teacher is wonderful and made sure he carried his hand sanitizer with him.
This evening was fairly relaxing until Justin decided to jump on the bed in the basement, fell off and hit his head on a dresser. He was alert and cried instantly, walking to the base of the stairs by the time I got there. He had a big squishy goose egg almost instantly, the skin was ready to burst but held tight to the blood beneath it so thankfully no need for stitches. We iced Justin with a bag of peas for about half an hour, Arron called our family health line first (sister-in-law Lesa) and after some more crying I called the Sask health line just to make sure we didn't need to take him in. Justin showed no other signs of a concussion and had a great evening after that but to be safe we will wake him every couple of hours. Why is it that it is always the hard way that they learn. As he said quite a few times tonight, "no more jumping on the bed".
Carter and Nathan do not have school the remainder of the week so will get to spend some time at home. I will work tomorrow and spend Friday at home. Looking forward to it.
Well its back to work and all is going well. Nathan and Justin spent Tuesday with Grandma and Grandpa Miller while Carter was at school. Tuesday evening was spent at the soccer field and playground until high winds and rain chased us home. Nathan had his first soccer game and although he didn't score any goals he was a great assistant and digger. His running isn't the same as it used to be but we are hoping that will change once treatment is done.
Today felt great to be able to take Nathan and Carter to school. Grandma Elsie was here with Justin and picked the boys up after school. They were able to stay for lunch today as their classes were busing to another school to watch a play. As much as I wanted to wrap Nathan in bubble wrap, he had fun going with his class. His teacher is wonderful and made sure he carried his hand sanitizer with him.
This evening was fairly relaxing until Justin decided to jump on the bed in the basement, fell off and hit his head on a dresser. He was alert and cried instantly, walking to the base of the stairs by the time I got there. He had a big squishy goose egg almost instantly, the skin was ready to burst but held tight to the blood beneath it so thankfully no need for stitches. We iced Justin with a bag of peas for about half an hour, Arron called our family health line first (sister-in-law Lesa) and after some more crying I called the Sask health line just to make sure we didn't need to take him in. Justin showed no other signs of a concussion and had a great evening after that but to be safe we will wake him every couple of hours. Why is it that it is always the hard way that they learn. As he said quite a few times tonight, "no more jumping on the bed".
Carter and Nathan do not have school the remainder of the week so will get to spend some time at home. I will work tomorrow and spend Friday at home. Looking forward to it.
Monday, May 4, 2009
AIM Days 48-53
No, we haven't forgotten to post but we have been rather busy. Nathan hasn't had any treatments for a week and so we have had almost a normal type of life. That means we were busy; settling into our house, taking Nathan to a couple of soccer practices, taking Carter to both soccer and baseball practices and taking Justin to spectate when his brothers are busy. Life.
Nathan has been feeling well though. I know he sometimes forgets that he is undergoing treatments and has stuff going on as he will yelp when he bangs his port against something, or he will bruise really easy as he bangs around like any boy does and then ask why he has bruises. Nathan also lost his second tooth and was excited that the tooth fairy found our new house. Also, on Saturday night we had our second annual Miller/Mcleod hockey draft. The kids were all very excited and we almost held their attention while they picked all of their players! The last couple of rounds got more difficult. Sunday evening we went kite flying. One of the benefits of having no yard means we have no fences and nor does anyone else. So we flew our kites and walked down to the end of the development, up and over a big dirt hill, to the sort of lake and back again, all while keeping our kites in the air. Oh, the downside of the new development is no trees (or houses) to block the wind, but the plus was that it was great for kite flying!
This is another week without treatment, Nathan starts a new phase next Monday. We'll talk about that more as it gets closer.
Nathan has been feeling well though. I know he sometimes forgets that he is undergoing treatments and has stuff going on as he will yelp when he bangs his port against something, or he will bruise really easy as he bangs around like any boy does and then ask why he has bruises. Nathan also lost his second tooth and was excited that the tooth fairy found our new house. Also, on Saturday night we had our second annual Miller/Mcleod hockey draft. The kids were all very excited and we almost held their attention while they picked all of their players! The last couple of rounds got more difficult. Sunday evening we went kite flying. One of the benefits of having no yard means we have no fences and nor does anyone else. So we flew our kites and walked down to the end of the development, up and over a big dirt hill, to the sort of lake and back again, all while keeping our kites in the air. Oh, the downside of the new development is no trees (or houses) to block the wind, but the plus was that it was great for kite flying!
This is another week without treatment, Nathan starts a new phase next Monday. We'll talk about that more as it gets closer.
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