July is fast approaching its end and we have never been more excited! For us it means one more month of treatment done and one step closer to the end.
We had a good weekend. Nathan felt good on Saturday so we went up to Murray Lake to visit our friends the Zakresky's. We had beautiful weather. The kids enjoyed playing ball, catching minnow's, paddle boating, playing in the sand, tubing (Carter and Katie that is) and fishing. Surprisingly the boys stayed awake until we arrived home Saturday night. Thanks for the visit. A year is way too long!
On Monday Nathan had another round of leg needles. He did really well. The clinic was busy with older kids this day so Nathan was asked to go to the procedure room. He jumped up and was ready. I was surprised but really appreciated the cooperation. He did really well with the needles. Nathan and I played a little bit of electronics together but we actually played Restaurant much longer. He enjoyed taking my order, finding the food and then of course providing me the bill.
Tomorrow is another round of leg needles so am hoping the morning goes as smoothly as yesterday.
Tuesday, July 28, 2009
Friday, July 24, 2009
AIM II Day 4-5
I had the day off of work today so Shelley got the day off from the Cancer Center this morning. Carter, Nathan and I went in around 9 am and it was not very busy at all. Nathan got in within a few minutes and, after a small discussion, he had his port accessed and the plasma started. As we've mentioned before every third leg needle they automatically give plasma. As we finished that the leg needles arrived from the pharmacy but Nathan wasn't ready for them just yet. We had some time today as it takes over an hour for the plasma to run through so we agreed to go back to the play room to have a 10 minute break.
When it was Nathan's turn again to go back in to get the leg needles he went fairly willingly. He also got the bandages off and had his leg disinfected without fuss which was nice. The first leg needle went well and onto the second one. Half way through the second one he starts crying and making a face and it looked like it was causing him no small discomfort BUT just before the needle was done his face broke into a huge grin. He was tricking us and was actually handling the needle well. I think that those tricks actually trick him more than us as it really does give him something to think about and distract him from what is actually going on. Whatever works!
We had to wait for the plasma to be done, which didn't take much longer, and we were on our way home by 10:45. All in all a pretty stress free day at the clinic.
With the nice weather, Darrell and Pam invited us over in the evening so the kids could have a watergun fight and cool off. There was a lot of reminding of when they could and could not shoot the other person (no shooting while refilling, no shooting in the face, etc) but it went as well as waterguns go. Auntie Lorrie even got in on the water gun action to have a little battle with the boys. I think she got the worst of it just because they were in swimming gear and she was in her regular clothes.
As we were getting ready to wind up our evening Nathan started to get a little whiny which is always the sign that he needs to get home fairly quickly or things start to go downhill fast. Unfortunately we weren't as fast as we should have been and Nathan really started to not feel well (which is why he gets whiny). Then as we were walking back out to the van Nathan got sick. After a few more minutes to clean that up we were finally on our way home. (Unfortunately for Uncle Darrell he had to be the one to clean off his drive way. But on the bright side at least it didn't land on someone's car! Thank you for cleaning up after Nathan.) Carter was a very big help as it took both Shelley and I to get Nathan in, cleaned up and ready for bed. That left Carter to herd his little brother into the house. He then got Justin upstairs and even helped him change into his pajamas. That was more like it! We could use that kind of help from him more often. Nathan went straight to bed and he had to have a bowl with him. He fell asleep almost instantly. Carter and Justin were a little more wired up and took a little longer to go down but they are finally asleep as well.
We need to be a little more cognisant of Nathan's behaviour and get him out BEFORE he gets to that point. It is a learning process for us all but as long as we are moving forward we will be able to handle all of these little trials.
Tomorrow we are going to attempt our first longer range outing with Nathan. We are going to go up to Murray Lake for the day to visit some good friends from Calgary. Of course, it all depends on how Nathan feels in the morning and if he starts his day like we just ended it then the trip will be off. If we do get to go, hopefully we can manage to keep Nathan from getting too worn out as he always wants to keep up with the other kids.
When it was Nathan's turn again to go back in to get the leg needles he went fairly willingly. He also got the bandages off and had his leg disinfected without fuss which was nice. The first leg needle went well and onto the second one. Half way through the second one he starts crying and making a face and it looked like it was causing him no small discomfort BUT just before the needle was done his face broke into a huge grin. He was tricking us and was actually handling the needle well. I think that those tricks actually trick him more than us as it really does give him something to think about and distract him from what is actually going on. Whatever works!
We had to wait for the plasma to be done, which didn't take much longer, and we were on our way home by 10:45. All in all a pretty stress free day at the clinic.
With the nice weather, Darrell and Pam invited us over in the evening so the kids could have a watergun fight and cool off. There was a lot of reminding of when they could and could not shoot the other person (no shooting while refilling, no shooting in the face, etc) but it went as well as waterguns go. Auntie Lorrie even got in on the water gun action to have a little battle with the boys. I think she got the worst of it just because they were in swimming gear and she was in her regular clothes.
As we were getting ready to wind up our evening Nathan started to get a little whiny which is always the sign that he needs to get home fairly quickly or things start to go downhill fast. Unfortunately we weren't as fast as we should have been and Nathan really started to not feel well (which is why he gets whiny). Then as we were walking back out to the van Nathan got sick. After a few more minutes to clean that up we were finally on our way home. (Unfortunately for Uncle Darrell he had to be the one to clean off his drive way. But on the bright side at least it didn't land on someone's car! Thank you for cleaning up after Nathan.) Carter was a very big help as it took both Shelley and I to get Nathan in, cleaned up and ready for bed. That left Carter to herd his little brother into the house. He then got Justin upstairs and even helped him change into his pajamas. That was more like it! We could use that kind of help from him more often. Nathan went straight to bed and he had to have a bowl with him. He fell asleep almost instantly. Carter and Justin were a little more wired up and took a little longer to go down but they are finally asleep as well.
We need to be a little more cognisant of Nathan's behaviour and get him out BEFORE he gets to that point. It is a learning process for us all but as long as we are moving forward we will be able to handle all of these little trials.
Tomorrow we are going to attempt our first longer range outing with Nathan. We are going to go up to Murray Lake for the day to visit some good friends from Calgary. Of course, it all depends on how Nathan feels in the morning and if he starts his day like we just ended it then the trip will be off. If we do get to go, hopefully we can manage to keep Nathan from getting too worn out as he always wants to keep up with the other kids.
Wednesday, July 22, 2009
AIM II Day 2-3
Nathan had another round of leg needles this morning. I have been given the idea of having a calendar for Nathan to cross off each treatment so that he can see that this is not something that is permanent and so that he can see how many are remaining. He was excited to be able to mark one more off!
Thank you God for the beautiful weather (finally)! Feeling a little house bound lately we decided to be adventourous this afternoon and headed to John Lake playground. What a fabulous afternoon! The city parks had the theme of "Olympics" today. We packed a picnic lunch and met Auntie Pam and cousins Ella and Johnathan. At first there were only a few kids there but it soon filled up. Its nice to going and seeing the kids know other children. They started the festivities with opening ceremonies. The kids followed the playground leader singing Oh Canada. Nathan was front of the line holding the banner with the leader while the others choose to take the end. Some of the contests they had were hula hoop, sponge game where you had two teams and had to try and empty your bucket first by wetting a spunge and then running back to your teams pail to squeeze out the water; wheel barrow race; one legged race; three legged race; and then in the water they had a race pushing the ball with their nose and pushing sponges with their feet. They were given gold, sliver and bronze medals which were hand made, for their placements. The kids loved it. Between the games and the food, the public library had story time in the park. Ella and Justin enjoyed that while Carter, Nathan and Johnathan enjoyed playing catch with a football in the paddling pool. Needless to say Nathan fell asleep on the ride home. It was great to see the kids playing and having fun. It really hasn't felt like summer for us this year so nice to have had today.
Thank you God for the beautiful weather (finally)! Feeling a little house bound lately we decided to be adventourous this afternoon and headed to John Lake playground. What a fabulous afternoon! The city parks had the theme of "Olympics" today. We packed a picnic lunch and met Auntie Pam and cousins Ella and Johnathan. At first there were only a few kids there but it soon filled up. Its nice to going and seeing the kids know other children. They started the festivities with opening ceremonies. The kids followed the playground leader singing Oh Canada. Nathan was front of the line holding the banner with the leader while the others choose to take the end. Some of the contests they had were hula hoop, sponge game where you had two teams and had to try and empty your bucket first by wetting a spunge and then running back to your teams pail to squeeze out the water; wheel barrow race; one legged race; three legged race; and then in the water they had a race pushing the ball with their nose and pushing sponges with their feet. They were given gold, sliver and bronze medals which were hand made, for their placements. The kids loved it. Between the games and the food, the public library had story time in the park. Ella and Justin enjoyed that while Carter, Nathan and Johnathan enjoyed playing catch with a football in the paddling pool. Needless to say Nathan fell asleep on the ride home. It was great to see the kids playing and having fun. It really hasn't felt like summer for us this year so nice to have had today.
Monday, July 20, 2009
AIM II Day 1
Nathan's counts were high enough to proceed with the next phase today - Augment Interim Maintenance II. He has done this phase once before and although the first two weeks will require a lot of visits to the clinic, I do remember him feeling relatively well throughout the last time. Today he had methotrexate through the lumbar puncture, erwina aspariginase via leg needles (thankfully these were done while he was sleeping), vincrstyne and methotrexate through IV.
Nathan was in a good mood going to the clinic. His lumbar treatment was to be at 9am but Dr Mpoffu was not yet back from Regina. Dr Ali headed there today so they traded off. When Dr Mpoffu was ready to examine Nathan, Nathan was all business. He climbed onto the examining table and politely told Dr Mpoffu he was ready. Dr Mpoffu had to ask the usual questions which Nathan didn't have much patience for. Nathan then proceeded to lighten the mood by asking Dr Mpoffu, "What's a kid to do around here to get some food?" Both Dr Mpoffu and I found this funny. Just to refresh the memory, Nathan is not allowed to eat until after he has his spinal treatment. This morning his appetite was back so the wait was a little uncomfortable. His spinal treatment was around 10:30am and he came out of it really good. Nurse Andrea, asked me if she had told me what Nathan had said the last time he had the spinal treatment and I said no. Apparently he sat up looked her square in the eye and without hesitation declared "I wasn't sleeping, I was just faking it." That was the day they had to give Nathan a little extra magic milk as it took longer than normal for him to fall asleep. That made her laugh the remainder of the day she said and obviously sits well in her memory.
Another little boy Carson was there today so they enjoyed sharing their snacks with each other. Someone else's always seems better than your own. Nathan had a good appetite today which was nice to see. He was tired when we got home and felt nauseous once but then felt better.
Wednesday will be another round of leg needles and Friday will be leg needles and fresh frozen plasma. We are making our way slowly but surely. We are thankful for the prayers and support that has helped us get this far.
Nathan was in a good mood going to the clinic. His lumbar treatment was to be at 9am but Dr Mpoffu was not yet back from Regina. Dr Ali headed there today so they traded off. When Dr Mpoffu was ready to examine Nathan, Nathan was all business. He climbed onto the examining table and politely told Dr Mpoffu he was ready. Dr Mpoffu had to ask the usual questions which Nathan didn't have much patience for. Nathan then proceeded to lighten the mood by asking Dr Mpoffu, "What's a kid to do around here to get some food?" Both Dr Mpoffu and I found this funny. Just to refresh the memory, Nathan is not allowed to eat until after he has his spinal treatment. This morning his appetite was back so the wait was a little uncomfortable. His spinal treatment was around 10:30am and he came out of it really good. Nurse Andrea, asked me if she had told me what Nathan had said the last time he had the spinal treatment and I said no. Apparently he sat up looked her square in the eye and without hesitation declared "I wasn't sleeping, I was just faking it." That was the day they had to give Nathan a little extra magic milk as it took longer than normal for him to fall asleep. That made her laugh the remainder of the day she said and obviously sits well in her memory.
Another little boy Carson was there today so they enjoyed sharing their snacks with each other. Someone else's always seems better than your own. Nathan had a good appetite today which was nice to see. He was tired when we got home and felt nauseous once but then felt better.
Wednesday will be another round of leg needles and Friday will be leg needles and fresh frozen plasma. We are making our way slowly but surely. We are thankful for the prayers and support that has helped us get this far.
Wednesday, July 15, 2009
ADI 62 & Holding
Nathan's white blood cells and neutrophils were not high enough, as expected, on Monday to start the next phase. Although we are anxious to get the treatment over with, a delay isn't necessarily a bad thing.
There are a lot more kids on our new street than on the last and our kids have been enjoying the outdoors (when it isn't raining that is)with them. So Monday afternoon gave them the opportunity to play. Tuesday afternoon Carter had a friend come and ask him to play so off they went. I soon had a phone call to work double checking if it was okay for Nathan to go and play as well which i said it was. When I arrived home, Grandma passed on Nathan's comment when Carter had left the house without him. It was something to the effect of "If Carter and Mya think I am still sick and they can play without me, they are mistaken". He was bound and determined to not be left out and had a fabulous time playing with the kids. Tonight the boys played hockey in the garage with a friend from down the street. This time it was Justin's turn to ensure he wasn't left out. He did awesome until he decided he didn't like his hockey stick and wanted Carter's instead. The only way to get him off the idea was to change sports so we played ball instead. Then the boys got out their quads and had a hoot chasing each other.
Nathan did ask tonight if we had to go to the clinic tomorrow but I told him he had another 4 days to play. He felt pretty good today but has complained more often than not of his stomach hurting which causes us concern. His diet has really been off since the last 4 weeks of treatment and although will try some meats still doesn't favour them. Tonight's snack request was a bowl of left over peas. I am thinking he will enjoy picking peas at Grandma's garden this year.
There are a lot more kids on our new street than on the last and our kids have been enjoying the outdoors (when it isn't raining that is)with them. So Monday afternoon gave them the opportunity to play. Tuesday afternoon Carter had a friend come and ask him to play so off they went. I soon had a phone call to work double checking if it was okay for Nathan to go and play as well which i said it was. When I arrived home, Grandma passed on Nathan's comment when Carter had left the house without him. It was something to the effect of "If Carter and Mya think I am still sick and they can play without me, they are mistaken". He was bound and determined to not be left out and had a fabulous time playing with the kids. Tonight the boys played hockey in the garage with a friend from down the street. This time it was Justin's turn to ensure he wasn't left out. He did awesome until he decided he didn't like his hockey stick and wanted Carter's instead. The only way to get him off the idea was to change sports so we played ball instead. Then the boys got out their quads and had a hoot chasing each other.
Nathan did ask tonight if we had to go to the clinic tomorrow but I told him he had another 4 days to play. He felt pretty good today but has complained more often than not of his stomach hurting which causes us concern. His diet has really been off since the last 4 weeks of treatment and although will try some meats still doesn't favour them. Tonight's snack request was a bowl of left over peas. I am thinking he will enjoy picking peas at Grandma's garden this year.
Sunday, July 12, 2009
ADI Day 57-62
Ohh, the week has been long.
Nathan managed to get through last weeks leg needles but not with ease. Friday was a rough morning. He was bound and determined not to go to the clinic. It took half an hour to get him into the van and he only did so as a result of a phone call to Dad who made a deal with him that if he listened to Mom, I could call Dad and he would come to the clinic for the needles. It still amazes me though, when we are there how closely Nathan pays attention to what is being done. He had a new nurse who was receiving some training in the Pediatric Oncology department, and he asked her if she was going to draw blood. She said no, she didn't need to today so hooked him up for the Fresh Frozen Plasma. One of the other nurses came in to ask if she had taken a blood sample and said no she didn't think she had to. Well it turned out she did have to as they were suspecting Nathan's counts to be lower than on Monday. I was surprised by this as the nurses kept telling me that the chemo he was getting wouldn't drop his counts any further. Well either they were wrong or I shouldn't have listened to them as Nathan's white blood cells took another dip. His WBC on Monday was 0.90 with Neutrophils of 0.24. Friday the WBC was 0.66 with Neutrophils of 0.11.
Nathan was tired but not enough to sleep Friday afternoon so we called his friend Michael to come for a visit. Carter went with Uncle Darrell and Auntie Pam to Good Spirit Lake for the weekend. He came back full of smiles. He had a great time despite bad weather on Saturday. The Goulden's were having cousin camp (all the cousins with their Grandma and Grandpa - so no parents until the weekend) so it was nice that Carter was able to be a guest and partake in the festivities. Thank you for taking Carter!
Saturday was another rainy, gloomy day. Nathan was tired and had a poor appetite until I made poached eggs for lunch. He loves his eggs - he must since he ate 4 of them. Finally we decided to get out of the house later in the afternoon. Nathan wanted to go for a bike ride but didn't believe us that it was too windy until he went for a spin around the block. So we decided to head out to Costco. He was almost asleep by the time we got there and when coming home was almost asleep again but just not enough to get him to sleep. So we agreed it would be supper,bath, a little TV time and bed. Well I was the first to fall asleep at 7pm on the couch with the boys. I awoke to Nathan telling me I wasn't allowed to sleep on the couch. If I wanted to sleep I had to go to bed. 8:15pm I went to bed. I woke shortly before 12 to discover Nathan sleeping beside me. Arron decided to stay up to catch up on some shows he taped. My back has been bothering me so I took a couple of back pills and was out again. Shortly after Arron moved Nathan back to his bed, Justin had a bad dream. It took until he came to sleep with us to fall back to sleep. Shortly after Arron had him back to his bed, Nathan was back in ours. I was sooo glad I went to sleep early. Arron on the other hand had to be up early this morning as he was asked to play ball for the day - 5 games. Needless to say he was in bed early tonight.
After a morning of refereeing between Nathan and Justin, we needed a change in scenery. We called our friend Mindy to come over with Jordan and Jessa and she arrived with doughnuts and Iced Cappachunios. Nathan was in a mood to start but soon got over it when he asked if we could go to John Lake park. We arrived at the park to discover the paddling pool was open. We weren't there long when Nathan and Jordan decided they should go in the pool. Of course I assessed the risk. With fresh, cold water, only 4 other older kids in the pool, and water tests taken every 30 mins and chlorine added every 30 mins, I thought it safe enough for Nathan to be in the pool. He thought it was great - he had a little freedom. I did remind him once to make sure he didn't put his face in the water in case he got some in his mouth and that was no problem. He and Justin were happy tossing balls around with their friends. Nathan tired really easily so after maybe 20 mins by the pool, we sat on a blanket having snacks. When the other kids were ready to go back in, Nathan was happy to sit on the blanket. He wanted to then swing, but it must have made him sleepy as he asked if we could leave and have a nap in the van. Since Arron was playing ball in Martensville we packed up and headed out there for a drive. Within two blocks he was asleep. Both he and Justin had a 45 minute nap and then we watched part of Arron's game.
The excitement of the evening was Nathan's bottom tooth was finally ready to come out - of course with a little help from Arron. Nathan was excited to put the tooth under his pillow for the tooth fairy.
Tomorrow will be an early morning at the clinic. If Nathan's WBC are at 0.75 then he will start the 5th phase, Augmented Interim Maintenance II. If they aren't, he will have a week off. Based on how low he was on Friday, I am thinking he will be delayed. His body needs a break.
Nathan managed to get through last weeks leg needles but not with ease. Friday was a rough morning. He was bound and determined not to go to the clinic. It took half an hour to get him into the van and he only did so as a result of a phone call to Dad who made a deal with him that if he listened to Mom, I could call Dad and he would come to the clinic for the needles. It still amazes me though, when we are there how closely Nathan pays attention to what is being done. He had a new nurse who was receiving some training in the Pediatric Oncology department, and he asked her if she was going to draw blood. She said no, she didn't need to today so hooked him up for the Fresh Frozen Plasma. One of the other nurses came in to ask if she had taken a blood sample and said no she didn't think she had to. Well it turned out she did have to as they were suspecting Nathan's counts to be lower than on Monday. I was surprised by this as the nurses kept telling me that the chemo he was getting wouldn't drop his counts any further. Well either they were wrong or I shouldn't have listened to them as Nathan's white blood cells took another dip. His WBC on Monday was 0.90 with Neutrophils of 0.24. Friday the WBC was 0.66 with Neutrophils of 0.11.
Nathan was tired but not enough to sleep Friday afternoon so we called his friend Michael to come for a visit. Carter went with Uncle Darrell and Auntie Pam to Good Spirit Lake for the weekend. He came back full of smiles. He had a great time despite bad weather on Saturday. The Goulden's were having cousin camp (all the cousins with their Grandma and Grandpa - so no parents until the weekend) so it was nice that Carter was able to be a guest and partake in the festivities. Thank you for taking Carter!
Saturday was another rainy, gloomy day. Nathan was tired and had a poor appetite until I made poached eggs for lunch. He loves his eggs - he must since he ate 4 of them. Finally we decided to get out of the house later in the afternoon. Nathan wanted to go for a bike ride but didn't believe us that it was too windy until he went for a spin around the block. So we decided to head out to Costco. He was almost asleep by the time we got there and when coming home was almost asleep again but just not enough to get him to sleep. So we agreed it would be supper,bath, a little TV time and bed. Well I was the first to fall asleep at 7pm on the couch with the boys. I awoke to Nathan telling me I wasn't allowed to sleep on the couch. If I wanted to sleep I had to go to bed. 8:15pm I went to bed. I woke shortly before 12 to discover Nathan sleeping beside me. Arron decided to stay up to catch up on some shows he taped. My back has been bothering me so I took a couple of back pills and was out again. Shortly after Arron moved Nathan back to his bed, Justin had a bad dream. It took until he came to sleep with us to fall back to sleep. Shortly after Arron had him back to his bed, Nathan was back in ours. I was sooo glad I went to sleep early. Arron on the other hand had to be up early this morning as he was asked to play ball for the day - 5 games. Needless to say he was in bed early tonight.
After a morning of refereeing between Nathan and Justin, we needed a change in scenery. We called our friend Mindy to come over with Jordan and Jessa and she arrived with doughnuts and Iced Cappachunios. Nathan was in a mood to start but soon got over it when he asked if we could go to John Lake park. We arrived at the park to discover the paddling pool was open. We weren't there long when Nathan and Jordan decided they should go in the pool. Of course I assessed the risk. With fresh, cold water, only 4 other older kids in the pool, and water tests taken every 30 mins and chlorine added every 30 mins, I thought it safe enough for Nathan to be in the pool. He thought it was great - he had a little freedom. I did remind him once to make sure he didn't put his face in the water in case he got some in his mouth and that was no problem. He and Justin were happy tossing balls around with their friends. Nathan tired really easily so after maybe 20 mins by the pool, we sat on a blanket having snacks. When the other kids were ready to go back in, Nathan was happy to sit on the blanket. He wanted to then swing, but it must have made him sleepy as he asked if we could leave and have a nap in the van. Since Arron was playing ball in Martensville we packed up and headed out there for a drive. Within two blocks he was asleep. Both he and Justin had a 45 minute nap and then we watched part of Arron's game.
The excitement of the evening was Nathan's bottom tooth was finally ready to come out - of course with a little help from Arron. Nathan was excited to put the tooth under his pillow for the tooth fairy.
Tomorrow will be an early morning at the clinic. If Nathan's WBC are at 0.75 then he will start the 5th phase, Augmented Interim Maintenance II. If they aren't, he will have a week off. Based on how low he was on Friday, I am thinking he will be delayed. His body needs a break.
Monday, July 6, 2009
ADI Day 51-56
Its been a while since the last post so will try and keep this brief...
July 1 didn't start off as planned or I guess it did and then got rail roaded. Everyone slept in thinking a leisurely morning was to be had. But that idea went sideways when I called the hospital to confirm a 1:30pm time for Nathan's leg needles. The supervising nurse informed me they just received the medication, it was only good for 15-20 mins and that they had Nathan scheduled for 10am. It put us into full rush mode as all were in pj's. We arrived shortly after the 20 min mark, thinking the meds would not be good and when the heck was the hospital going to call and let us know that Nathan had a 10am appointment anyway? We quickly found out the supervising nurse phoned pharmacy after speaking with us and the meds weren't the kind that only lasted 15mins. It was mixed differently so that it had a shelf life of 8 hours. Yet again the left hand doesn't talk to the right hand the confusion that is caused by lack of information and communication in the medical system brought frustration. The bright side was they got us there earlier which left more time in the afternoon. Nathan was very upset by the thought of another round of leg needles. He told us he wanted them done. He also had forgotten how to handle them so had to remind him how to focus and concentrate on his breathing. Some how we managed to get through but there were a lot of tears.
We were home for lunch and that was followed by naps for Nathan and Justin. With Nathan's counts being so low he has been having two naps a day. The second one was after a short outing to the forestry farm. We took the kids to the fireworks but Nathan was ready to sleep by 10pm and wanted to go home. He was happy once they started. The boys all enjoyed seeing the fireworks. Nathan was the first to fall asleep on the walk back to the van. Justin lasted till we reached the parking lot and Carter did wonderful. Since the other two were in the chariot he walked the majority of the way. The remainder of the way, we took turns giving him rides.
Nathan's counts are slowly coming up - but at a snails pace. His energy level only seems to know 2 speeds - fast and not moving. Carter received a rocket for his birthday from Auntie Pam and Uncle Darrell so he and Arron built it over a few days. There was no wind on Saturday so it was a good day to set it off. The kids loved seeing it. It shot a few hundred feet into the air and came down with a parachute so that it could be launched again. The kids would then go and get it. The other pastime the boys have discovered is that they have there own driving range in their very own back yard. Carter and Nathan came up with the plan - Carter would drive golf balls and Nathan would find the balls via his quad. Then they switched.
Yesterday was another beautiful day. We suggested a family bike ride and Nathan decided it was time to try riding his 2 wheeler again. He had no problem finding his balance this time and thought it was the greatest. We took them to Tim Horton's for a drink and treat and then biked to the park. It was a very leisurely afternoon. Yesterday was the first day Nathan didn't nap but we watched a movie while Arron and Justin napped. Then it was back outside. It had rained while we were in and the boys had fun going through the puddles. Nathan was the wettest and the muddiest simply because he "just couldn't help going through the puddles" - so his story goes.
Another round of leg needles came and went today. Nathan asked how many were left. He has Wed and Fri so 4 needles left in this phase. Since his counts are slow to come up, I am thinking he won't be ready to start the next phase on the 13th. Since there is no consistency and the body is unpredictable, its a 50-50 chance that he will be ready.
July 1 didn't start off as planned or I guess it did and then got rail roaded. Everyone slept in thinking a leisurely morning was to be had. But that idea went sideways when I called the hospital to confirm a 1:30pm time for Nathan's leg needles. The supervising nurse informed me they just received the medication, it was only good for 15-20 mins and that they had Nathan scheduled for 10am. It put us into full rush mode as all were in pj's. We arrived shortly after the 20 min mark, thinking the meds would not be good and when the heck was the hospital going to call and let us know that Nathan had a 10am appointment anyway? We quickly found out the supervising nurse phoned pharmacy after speaking with us and the meds weren't the kind that only lasted 15mins. It was mixed differently so that it had a shelf life of 8 hours. Yet again the left hand doesn't talk to the right hand the confusion that is caused by lack of information and communication in the medical system brought frustration. The bright side was they got us there earlier which left more time in the afternoon. Nathan was very upset by the thought of another round of leg needles. He told us he wanted them done. He also had forgotten how to handle them so had to remind him how to focus and concentrate on his breathing. Some how we managed to get through but there were a lot of tears.
We were home for lunch and that was followed by naps for Nathan and Justin. With Nathan's counts being so low he has been having two naps a day. The second one was after a short outing to the forestry farm. We took the kids to the fireworks but Nathan was ready to sleep by 10pm and wanted to go home. He was happy once they started. The boys all enjoyed seeing the fireworks. Nathan was the first to fall asleep on the walk back to the van. Justin lasted till we reached the parking lot and Carter did wonderful. Since the other two were in the chariot he walked the majority of the way. The remainder of the way, we took turns giving him rides.
Nathan's counts are slowly coming up - but at a snails pace. His energy level only seems to know 2 speeds - fast and not moving. Carter received a rocket for his birthday from Auntie Pam and Uncle Darrell so he and Arron built it over a few days. There was no wind on Saturday so it was a good day to set it off. The kids loved seeing it. It shot a few hundred feet into the air and came down with a parachute so that it could be launched again. The kids would then go and get it. The other pastime the boys have discovered is that they have there own driving range in their very own back yard. Carter and Nathan came up with the plan - Carter would drive golf balls and Nathan would find the balls via his quad. Then they switched.
Yesterday was another beautiful day. We suggested a family bike ride and Nathan decided it was time to try riding his 2 wheeler again. He had no problem finding his balance this time and thought it was the greatest. We took them to Tim Horton's for a drink and treat and then biked to the park. It was a very leisurely afternoon. Yesterday was the first day Nathan didn't nap but we watched a movie while Arron and Justin napped. Then it was back outside. It had rained while we were in and the boys had fun going through the puddles. Nathan was the wettest and the muddiest simply because he "just couldn't help going through the puddles" - so his story goes.
Another round of leg needles came and went today. Nathan asked how many were left. He has Wed and Fri so 4 needles left in this phase. Since his counts are slow to come up, I am thinking he won't be ready to start the next phase on the 13th. Since there is no consistency and the body is unpredictable, its a 50-50 chance that he will be ready.
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