Friday we went back to the clinic for blood work and with it being Day 5 of steroids, we were in a full blown hormonal storm. After an hour of coaxing Nathan to go into the nurse's room to be accessed I called Arron. Nathan was having nothing to do with being at the clinic and I was the meanest person in the world for having brought him there. The thought of going to school for a Valentine party and an afternoon of Olympic fun didn't even bring a smile to Nathan's face. And as quickly as the storm came, the storm passed. He forgot all about the clinic as soon as he walked into the class room as he showed a grin from ear to ear. Then later in the evening the tears came when he was telling us the reason he didn't want to be at the clinic was because he was too excited about going away for the weekend. (Go figure.) We made it through another week of those blasted steroids. Watching the impact on his psychological being is harder than watching him with the chemotherapy drugs.
But that being said, his WBC went from Mondays blood work of 1.64 to3.39, platelets of 29 to 150, neutrophils of .71 to 2.37 and hemoglobin from 122 to 109. We headed up to Carrot River Friday night and enjoyed an evening at Julianne & Rodney's. The father of a good friend of ours passed away last Tuesday and Arron was pall bearer Saturday afternoon. The boys enjoyed time with Auntie Wendy, Uncle Lyle, and Nick while we were at the funeral. 3 hours of road hockey and muffins as a snack made the kids day. Justin asked what road hockey was and Nathan was concerned about traffic but after we explained it was allowed they were excited to play on the street. Justin was happy to report that evening that he had made a new friend as the neighbors son and nephews joined the kids in their game. Carter quite enjoyed the game. Evening was spent with all three sisters and family and had an enjoyable visit followed by the kids enjoying their ping pong table and watching out for Sadie as she tried to get to the ball before they did.
Since the weather had warmed up we headed out to the cabin Sunday and had an enjoyable day of fishing and toboganning. It seemed to take forever to get the cabin to warm up but by the time we were ready to head home yesterday we finally got it to a balmy 23 degrees. Justin is at the stage where he is so grateful for everything. He found toboganning to be "awesome" and asked every time he climbed the hill if he could do it again. And Monday, he was so happy to be at the cabin he said to Arron and I "thanks for bringing me to this place". And he is only 3. Later that day both Carter and Nathan agreed that they wished they could stay longer and that they could tobogan every day but alas a trip to the Cancer Clinic was needed for blood work the next morning.
Arron took the week off to be home with the boys so started the day with a longer than expected trip to the clinic for blood work to determine pill doses. Nathan was very co-operative today. Counts were all comparable to Friday's blood work so started on half doses of his pills today for a two week period. After this a trip to the mall for mini-golf and groceries followed by lunch and play dates for Carter and Nathan and a nap for Justin, the boys rounded out the day with an evening spent on the hockey rink with Arron, our 3 boys and a neighbor boy and his friend having a friendly game of scrimmage. Arron did a great job on the rink this year and the boys have really enjoyed being out there. Carter even volunteered to go out earlier today to do his "homework" his coach had instructed the kids to do. Today was by far the best mood Nathan was in since Friday and a lot more cooperative but it will take a couple more days to get a steady mood back.
Tuesday, February 16, 2010
Monday, February 8, 2010
Maintenance Day 85
Happy New Year! Its time for a post! Life has been busy with the kids settling into regular routines of school, music, hockey, home work and having friends over so we have been busy.
We have made it through the first 3 month phase of Maintenance and started another round. Essentially Nathan's treatment plan is planned for a 3 month period and then we repeat it over and over again. Nathan is doing well. His hair is growing back nicely although I can't quite decipher the color. He was our blond boy before he got sick and now his hair is not sure if it wants to be dark or light. Guess maybe the summer sun will help it out when we get there.
After not being at the clinic for 4 weeks, both Nathan and I were apprehensive about returning. Today was the lumbar puncture with Intrathecal Methotrexate. Nathan wasn't happy about not being able to eat or drink but was the only one scheduled for today so was in by 9:15am and he did very well. The good news was that procedure went well. The disappointing news was that the chemotherapy pills Nathan takes daily had wiped out his plateletes and his platelete levels were at 29, with neutrophils of only .71. With the plateletes being so low, Dr Ali put orders in for a platelete transfusion except there wasn't any at the hospital. So to make the most of a long day, Nathan and I picked Arron up for lunch which was a nice outing. We returned shortly after 1pm and by 1:45pm the plateletes had arrived from another location. All went well and Nathan received them well. We were home by 3:30pm, in time for me to switch boys and take Carter to his hockey game. It was a great game! Carter had some great plays and scored his second goal of the year (his first was on Friday and Arron saw that one but I didn't) so was great to see. They lost 3 to 2 so was a very close game.
Since Nathan's counts were so low, all chemotherapy pills are held for the week. He is one steroids for another 5 days starting today. Lovely little pills those are. Arron and I know what to expect - hungry, emotional boy at the start followed by anxious, not sleeping, over stimulated boy who one minute will be smiling and happy and then next is crying. So each Saturday following the 5 days of steroids, Arron and I are glad the last pill has been administered and wait for the come down. We will return to the clinic Friday morning for blood work and again on Tuesday just to see where he is at. At least these are in and out visits with no wait for blood work or pharmacy. With plateletes being low and the inability to clot, one would think we would seeing bruising with Nathan but we never do. The symptoms that we can look back now on and see are increased tiredness (although if you ask him if he is tired the answer is always no !), loose stomach and this time around on Sat we noticed Nathan had a bruise on his tongue, right in the middle. That was an odd one.
Althought the weather was a balmy -19 Arron, Justin, Carter and his friend headed out to play hockey on the rink tonight. Nathan did not participate for obvious reasons so worked on extra phonic sheets with me instead. He has improved greatly with his reading and identification of words. His attitude towards the school work has improved as well which has been great to see.
With the kids break approaching we aren't sure what we will be doing. Thought we would know today but guess Friday will be a better indicator both for weather and for blood work.
We have made it through the first 3 month phase of Maintenance and started another round. Essentially Nathan's treatment plan is planned for a 3 month period and then we repeat it over and over again. Nathan is doing well. His hair is growing back nicely although I can't quite decipher the color. He was our blond boy before he got sick and now his hair is not sure if it wants to be dark or light. Guess maybe the summer sun will help it out when we get there.
After not being at the clinic for 4 weeks, both Nathan and I were apprehensive about returning. Today was the lumbar puncture with Intrathecal Methotrexate. Nathan wasn't happy about not being able to eat or drink but was the only one scheduled for today so was in by 9:15am and he did very well. The good news was that procedure went well. The disappointing news was that the chemotherapy pills Nathan takes daily had wiped out his plateletes and his platelete levels were at 29, with neutrophils of only .71. With the plateletes being so low, Dr Ali put orders in for a platelete transfusion except there wasn't any at the hospital. So to make the most of a long day, Nathan and I picked Arron up for lunch which was a nice outing. We returned shortly after 1pm and by 1:45pm the plateletes had arrived from another location. All went well and Nathan received them well. We were home by 3:30pm, in time for me to switch boys and take Carter to his hockey game. It was a great game! Carter had some great plays and scored his second goal of the year (his first was on Friday and Arron saw that one but I didn't) so was great to see. They lost 3 to 2 so was a very close game.
Since Nathan's counts were so low, all chemotherapy pills are held for the week. He is one steroids for another 5 days starting today. Lovely little pills those are. Arron and I know what to expect - hungry, emotional boy at the start followed by anxious, not sleeping, over stimulated boy who one minute will be smiling and happy and then next is crying. So each Saturday following the 5 days of steroids, Arron and I are glad the last pill has been administered and wait for the come down. We will return to the clinic Friday morning for blood work and again on Tuesday just to see where he is at. At least these are in and out visits with no wait for blood work or pharmacy. With plateletes being low and the inability to clot, one would think we would seeing bruising with Nathan but we never do. The symptoms that we can look back now on and see are increased tiredness (although if you ask him if he is tired the answer is always no !), loose stomach and this time around on Sat we noticed Nathan had a bruise on his tongue, right in the middle. That was an odd one.
Althought the weather was a balmy -19 Arron, Justin, Carter and his friend headed out to play hockey on the rink tonight. Nathan did not participate for obvious reasons so worked on extra phonic sheets with me instead. He has improved greatly with his reading and identification of words. His attitude towards the school work has improved as well which has been great to see.
With the kids break approaching we aren't sure what we will be doing. Thought we would know today but guess Friday will be a better indicator both for weather and for blood work.
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