Back in the hospital we go. Nathan complained a few times that his heart hurt today, and then by about 7pm he developed a fever. We lined things up, stopped for McDonalds on the way to the hospital and were admitted by 9pm. Nathan has had an x-ray and electrocardiogram already, he actually fell asleep while they were doing the electrocardiogram about 11pm.
Thankfully we had nurse Adam tonight as he is good at accessing Nathan's port. We had no issues with that. Adam then told us Nathan would be started on Taz which is the big gun antibiotic. And usually means a 14 day stay for us :-(
We'll find out more tomorrow.
Tuesday, July 13, 2010
Monday, July 12, 2010
Induction Day 15
Its been a long day so am going to do it by the numbers of our day:
5:10 am - the time Nathan wanted to get up for the day (steroids causes sleeplessness)
6:30 am - the time my alarm went off and Nathan came into our bedroom, dressed for the day, with emla cream in hand asking "is this the right one"
8:15 am - 7 - the number of dishes I packed for Nathan's "breakfast, snack and lunch" to be had at the clinic - (1) cereal and milk in a thermos, (2) chicken noodle soup (3) pizza (4) cheese noodles with steak (5) pear (6) carrots and brocoli with ranch dip (7) cookies (and yes, he ate it all!)
10:30 am - the time the platelet transfusion started
10:45 am - anistheisiologist was 45 mins late for Nathan's spinal treatment - torture for a child on steroids who can't eat until after his "sleep". By this time Nathan has asked at least 50 times if he could eat yet and when told no, 50 responses of "you are so mean!" Yes I am because I love him.
11:15 am - the time Nathan was able to eat by
12:45 pm - the time the red blood cell transfusion started (To everyone who donates blood on a regular basis, thank you - you saved our son again.)
1:30 pm - the time Nathan decided he needed a nap so had one
4:23 pm - the time Nathan's day ended at the clinic (8 hours later)
4:52 pm - the time we stopped for Blizzards as Nathan just had to have one (he ate his before supper, we saved ours for after supper - needless to say I didn't get to eat mine - Nathan had it)
0.01 - the number of neutrophils (infection fighting cells) in Nathan's body which means chemo is working in wiping out the White Blood Cells but risk of fever and infection
3 - was the number of times we took his temperature today
25 or so - the number of times Nathan said "Mom - I need you!"
25 or so - the number of times he said he loved me.
15 or so - the number of times I cried today.
100 or so - the number of times I prayed today.
5:10 am - the time Nathan wanted to get up for the day (steroids causes sleeplessness)
6:30 am - the time my alarm went off and Nathan came into our bedroom, dressed for the day, with emla cream in hand asking "is this the right one"
8:15 am - 7 - the number of dishes I packed for Nathan's "breakfast, snack and lunch" to be had at the clinic - (1) cereal and milk in a thermos, (2) chicken noodle soup (3) pizza (4) cheese noodles with steak (5) pear (6) carrots and brocoli with ranch dip (7) cookies (and yes, he ate it all!)
10:30 am - the time the platelet transfusion started
10:45 am - anistheisiologist was 45 mins late for Nathan's spinal treatment - torture for a child on steroids who can't eat until after his "sleep". By this time Nathan has asked at least 50 times if he could eat yet and when told no, 50 responses of "you are so mean!" Yes I am because I love him.
11:15 am - the time Nathan was able to eat by
12:45 pm - the time the red blood cell transfusion started (To everyone who donates blood on a regular basis, thank you - you saved our son again.)
1:30 pm - the time Nathan decided he needed a nap so had one
4:23 pm - the time Nathan's day ended at the clinic (8 hours later)
4:52 pm - the time we stopped for Blizzards as Nathan just had to have one (he ate his before supper, we saved ours for after supper - needless to say I didn't get to eat mine - Nathan had it)
0.01 - the number of neutrophils (infection fighting cells) in Nathan's body which means chemo is working in wiping out the White Blood Cells but risk of fever and infection
3 - was the number of times we took his temperature today
25 or so - the number of times Nathan said "Mom - I need you!"
25 or so - the number of times he said he loved me.
15 or so - the number of times I cried today.
100 or so - the number of times I prayed today.
Sunday, July 11, 2010
Induction Day 14
A lot of stuff happens in a few days but we still don't know as much as we'd like. Friday we went into the clinic for platelets and leg needles and Nathan did wonderfully well. He has started to put on his own Emla cream, and take it off when we get there. He breezed through the leg needles again Friday so at least there is a positive there. They informed us that we'd have a video conference with Dr Lewis on the 21st of July. That was still two weeks away! We wanted, and still want, more information before then as we are being asked to make major decisions based on little to no information and that is not sitting well with us. Hopefully they'll get something else arranged before we end up just driving down there and demanding to meet.
On Saturday I ventured back up to Carrot River where friends and family put on a benefit for Nathan and our family. They had wonderful weather, a great golf course with 112 golfers participating, a delicious supper with awesome entertainment. All those superlatives aren't enough to describe the people though -everyone there was just simply beyond words. From my family and friends who set up both the farm yard and various golfing events, to all the people that donated items or their time, to the people who worked the benefit and finally to the people stepping up at the auction - the response was overwhelming. The band was great and the party was in full swing when I left. You all know that you played a big part and please know the heartfelt gratitude going from our family to all of yours. Incredible!
While I was in Carrot River golfing Shelley tried to have a "normal day" with the boys. They did a kid project at Home Depot, some crafts from Michaels and picked up some food to have a picnic in the park. Nathan was feeling well so had to use the opportunity while it was present. A good afternoon was had and they had a movie night in the evening. Shelley said it was a great day. On Sunday we got home early in the afternoon and I set up the pool for the boys on the front lawn. They had a blast in it. Nathan tends to overdo it a bit, so it is a real balancing act for Shelley and I to get him to stop something while he is still good vs waiting for the lower energy and poor feeling he gets when he gets too far into an activity. This evening he had to have a rest but it wasn't very long before he was wondering what his brothers were doing and was back outside taking part in some badminton.
Tomorrow is a longer day at the clinic. Nathan will be getting his triple intrathecal therapy, leg needles, and vincristine. Oh did I mention we are onto drug number 13 now? He is now having Nyastatin to help with sores in his mouth once again. We continue to pray that Nathan's body will handle the treatments, that one of us is a match and that we will have a sense of direction soon.
On Saturday I ventured back up to Carrot River where friends and family put on a benefit for Nathan and our family. They had wonderful weather, a great golf course with 112 golfers participating, a delicious supper with awesome entertainment. All those superlatives aren't enough to describe the people though -everyone there was just simply beyond words. From my family and friends who set up both the farm yard and various golfing events, to all the people that donated items or their time, to the people who worked the benefit and finally to the people stepping up at the auction - the response was overwhelming. The band was great and the party was in full swing when I left. You all know that you played a big part and please know the heartfelt gratitude going from our family to all of yours. Incredible!
While I was in Carrot River golfing Shelley tried to have a "normal day" with the boys. They did a kid project at Home Depot, some crafts from Michaels and picked up some food to have a picnic in the park. Nathan was feeling well so had to use the opportunity while it was present. A good afternoon was had and they had a movie night in the evening. Shelley said it was a great day. On Sunday we got home early in the afternoon and I set up the pool for the boys on the front lawn. They had a blast in it. Nathan tends to overdo it a bit, so it is a real balancing act for Shelley and I to get him to stop something while he is still good vs waiting for the lower energy and poor feeling he gets when he gets too far into an activity. This evening he had to have a rest but it wasn't very long before he was wondering what his brothers were doing and was back outside taking part in some badminton.
Tomorrow is a longer day at the clinic. Nathan will be getting his triple intrathecal therapy, leg needles, and vincristine. Oh did I mention we are onto drug number 13 now? He is now having Nyastatin to help with sores in his mouth once again. We continue to pray that Nathan's body will handle the treatments, that one of us is a match and that we will have a sense of direction soon.
Wednesday, July 7, 2010
Induction Day 10
If bad news comes in threes then we just got our third one out of the way.
The biopsy results on Nathan's testicle came back positive - there were leukemic cells present inside his testes. We were hoping that the torsion of the appendix epidydimus was the sole cause of his swelling and discomfort, but unfortunately that was not it. We are not completely sure how this affects everything yet, other than now we know that Nathan will require radiation therapy to his testes. Dr Ali was not certain if it would be after induction or sometime in the next few weeks. I know we have to keep rolling with it, but it sure would be nice if there were answers to all these questions - this is getting more and more frustrating.
Other than that we had a very interesting morning. Nathan decided that he was NOT going for more leg needles today and Shelley could not convince him to get moving and allow her to put the Emla cream on his legs. They phoned me, and though Nathan knew that he needed the treatments, and he agreed that he had to get them, he still wasn't going.... While we were talking this through with him, he took the Emla cream and put it on his own thighs and covered it up with an opsite covering. He then proceeded to put the cream over his port, bandaged that up and was ready to go. Kind of surprised Shelley and I, but Nathan is all about control. He wants to feel like he has some control over what is happening to his body and who can fault that. Shelley and Nathan met me at the Cancer center a little after our 8:30 appointment, as it was closer to 9 they were waiting for us, and we went right into the first room. We discussed how he was going to get the leg needles, and we assured him that nurse Andrea was way better than the ped nurses and he finally agreed to get going. We did his left leg first,(with him taking off the opsite covering and removing the cream) and it hurt a bit but he breathed through it and kept control. When we moved over to the right leg, he was busy making funny faces at his mother pretending that it hurt (or really pretending that it did not) and that one was a piece of cake. He was also very agreeable at getting his port accessed - even his counting was to a small number and darn quick. He even was helpful when Dr Ali did a checkup on him and did everything as asked when asked - which is a little unusual. Did we mention yet that his temperament seems to be a lot better on the Prednisone steroid than it was on the Dexamethasone.
He was given fresh frozen plasma that takes a couple hours so he and his mother had a pretty good morning, at least playing and behaving wise. Shelley and I did take this latest news hard at first, and it is still tough to understand why we keep getting more piled onto an overflowing plate but with the support and love from family and friends I'm sure we will get through this one too. (took awhile to get my positive attitude going on this one today but I think I've got it there.)
Nathan has nothing on Thursday but he will get platelets before his leg needles on Friday morning. We are still hopeful that we will finally get to talk to Dr Lewis from Calgary before too long. It is starting to feel like Nathan's treatment isn't as urgent/important as it once was to the medical staff and that is starting to get to us.
The biopsy results on Nathan's testicle came back positive - there were leukemic cells present inside his testes. We were hoping that the torsion of the appendix epidydimus was the sole cause of his swelling and discomfort, but unfortunately that was not it. We are not completely sure how this affects everything yet, other than now we know that Nathan will require radiation therapy to his testes. Dr Ali was not certain if it would be after induction or sometime in the next few weeks. I know we have to keep rolling with it, but it sure would be nice if there were answers to all these questions - this is getting more and more frustrating.
Other than that we had a very interesting morning. Nathan decided that he was NOT going for more leg needles today and Shelley could not convince him to get moving and allow her to put the Emla cream on his legs. They phoned me, and though Nathan knew that he needed the treatments, and he agreed that he had to get them, he still wasn't going.... While we were talking this through with him, he took the Emla cream and put it on his own thighs and covered it up with an opsite covering. He then proceeded to put the cream over his port, bandaged that up and was ready to go. Kind of surprised Shelley and I, but Nathan is all about control. He wants to feel like he has some control over what is happening to his body and who can fault that. Shelley and Nathan met me at the Cancer center a little after our 8:30 appointment, as it was closer to 9 they were waiting for us, and we went right into the first room. We discussed how he was going to get the leg needles, and we assured him that nurse Andrea was way better than the ped nurses and he finally agreed to get going. We did his left leg first,(with him taking off the opsite covering and removing the cream) and it hurt a bit but he breathed through it and kept control. When we moved over to the right leg, he was busy making funny faces at his mother pretending that it hurt (or really pretending that it did not) and that one was a piece of cake. He was also very agreeable at getting his port accessed - even his counting was to a small number and darn quick. He even was helpful when Dr Ali did a checkup on him and did everything as asked when asked - which is a little unusual. Did we mention yet that his temperament seems to be a lot better on the Prednisone steroid than it was on the Dexamethasone.
He was given fresh frozen plasma that takes a couple hours so he and his mother had a pretty good morning, at least playing and behaving wise. Shelley and I did take this latest news hard at first, and it is still tough to understand why we keep getting more piled onto an overflowing plate but with the support and love from family and friends I'm sure we will get through this one too. (took awhile to get my positive attitude going on this one today but I think I've got it there.)
Nathan has nothing on Thursday but he will get platelets before his leg needles on Friday morning. We are still hopeful that we will finally get to talk to Dr Lewis from Calgary before too long. It is starting to feel like Nathan's treatment isn't as urgent/important as it once was to the medical staff and that is starting to get to us.
Monday, July 5, 2010
Induction Day 8
Today has been a long day... the entire family was at the clinic for 9am as Nathan was scheduled to have a spinal treatment today. With his platelets all over the board, we asked whether they would proceed or wait for blood work to come back. His platelets were 43 on Saturday and the magic number we were told is 50. So on the assumption that they would reduce further, we waited for blood work to come back switching Nathan's treatment time with another child's. It was a good thing we waited as his platelets came in at 19! Needless to say Nathan received another platelet transfusion today. He received extra sleepy medication today in order to have the leg needles given to him while he was sleeping. He felt horrible today and had a headache right after the treatment, an indication he sat up too soon after having it. Although nauseated and tired, he managed to sleep this afternoon putting him in a really good mood for the evening. Nathan will have a triple intrathecal treatment every Monday during this phase.
The boys were great at the clinic today. Nathan walked in talking over his shoulder to his brothers: "follow me boys", since this was his domain. They enjoyed the Starlite system together and then when asked to go in to get the topical cream on their arms for the HLA testing they did great. Carter was anxious as he was thinking more about the needle and Justin was relaxed as he didn't understand. Arron went first followed by Carter and Justin putting me last. The needles the clinic uses to draw blood are a lot shorter than when you go for blood work. The nurses had to fill 2 tubes - somewhere between 8-10mls- each. Carter seemed to flow slowly so actually needed two pokes to complete his blood work but he did really well and the nurses were great at providing distractions for them. Justin was great, and teased Carter at the end that he did better than him but they both did wonderful. Since I was last the boys wanted to go out to play the Wii rather than wait and I was grateful as I hate needles :). It didn't hurt but by that point my anxiety levels were high and I was grateful for a few minutes to let the tears fall. Now we wait and pray that one of us is a match.
Nathan's white blood cells were at 0.58 today and neutrophils of 0.18. He will have leg needles and fresh frozen plasma on Wed and leg needles on Friday, so hopefully his counts will stabilize and only the good ones will come back. We also pray for no fever.
The boys were great at the clinic today. Nathan walked in talking over his shoulder to his brothers: "follow me boys", since this was his domain. They enjoyed the Starlite system together and then when asked to go in to get the topical cream on their arms for the HLA testing they did great. Carter was anxious as he was thinking more about the needle and Justin was relaxed as he didn't understand. Arron went first followed by Carter and Justin putting me last. The needles the clinic uses to draw blood are a lot shorter than when you go for blood work. The nurses had to fill 2 tubes - somewhere between 8-10mls- each. Carter seemed to flow slowly so actually needed two pokes to complete his blood work but he did really well and the nurses were great at providing distractions for them. Justin was great, and teased Carter at the end that he did better than him but they both did wonderful. Since I was last the boys wanted to go out to play the Wii rather than wait and I was grateful as I hate needles :). It didn't hurt but by that point my anxiety levels were high and I was grateful for a few minutes to let the tears fall. Now we wait and pray that one of us is a match.
Nathan's white blood cells were at 0.58 today and neutrophils of 0.18. He will have leg needles and fresh frozen plasma on Wed and leg needles on Friday, so hopefully his counts will stabilize and only the good ones will come back. We also pray for no fever.
Saturday, July 3, 2010
Induction Day 4
We are amazed at Nathan's ability to handle his treatment physically. The last time Nathan went through these treatments, particularly with the ARA-C, it really beat him up. This time he is fighting back very hard! Other than a little black under the eyes, and occasionally acting tired, he has been handling it well. His counts are low, so his energy levels should be low as well, but he constantly has to be on the go. I think part of it is, that if he slows down, he crashes ... kind of like that movie Crank, where the guy has to keep his adrenaline flowing to stay alive.
The other side, of course, is that this is starting to take its toll on him mentally again. We had the first set of leg needles yesterday and that started to bring out the recalcitrant patient. The first one didn't get so well, but Nathan did very good on the second needle. He then explained it afterwards that his right leg is tougher than his left - and he might be correct as he always handles the right leg better than the left... hmmm. It is getting tougher to convince him once again that he needs the treatment.
Having been in the hospital all week, and leaving during the afternoons, we haven't had a chance to talk with Dr Ali about Nathan's treatment plan. When we were finally able to talk to Dr Mpofu yesterday, there is still some confusion as to how we are proceeding because of not starting everything on Monday. Dr Ali wanted to get treatment days back to Monday, Dr Mpofu wanted them to stay on Tuesday. I ended up talking to the people at the Cancer center four times yesterday to simply get back to, "come in on Monday morning". Sometimes I find it ironic that they keep on telling us to Expect the Unexpected and that we simply have to deal with it, but that same Unexpected seems to through them for a spin as well.
They are trying to move up Nathan's treatments today so that we can be released tonight and not have to spend another night in the hospital tonight. It would mean coming home very late but that would be a very good thing as it is tough to sleep in the hospital.
Lastly, Nathan really misses his brothers - I sure hope his actions show that when they return.
The other side, of course, is that this is starting to take its toll on him mentally again. We had the first set of leg needles yesterday and that started to bring out the recalcitrant patient. The first one didn't get so well, but Nathan did very good on the second needle. He then explained it afterwards that his right leg is tougher than his left - and he might be correct as he always handles the right leg better than the left... hmmm. It is getting tougher to convince him once again that he needs the treatment.
Having been in the hospital all week, and leaving during the afternoons, we haven't had a chance to talk with Dr Ali about Nathan's treatment plan. When we were finally able to talk to Dr Mpofu yesterday, there is still some confusion as to how we are proceeding because of not starting everything on Monday. Dr Ali wanted to get treatment days back to Monday, Dr Mpofu wanted them to stay on Tuesday. I ended up talking to the people at the Cancer center four times yesterday to simply get back to, "come in on Monday morning". Sometimes I find it ironic that they keep on telling us to Expect the Unexpected and that we simply have to deal with it, but that same Unexpected seems to through them for a spin as well.
They are trying to move up Nathan's treatments today so that we can be released tonight and not have to spend another night in the hospital tonight. It would mean coming home very late but that would be a very good thing as it is tough to sleep in the hospital.
Lastly, Nathan really misses his brothers - I sure hope his actions show that when they return.
Thursday, July 1, 2010
Induction Day 3
It was really strange coming home to an empty house - Arron's at the hospital tongiht with Nathan, and Carter and Justin are camping with Grandpa and Grandma Miller. Usually its a welcomed break but not so much given the circumstances.
Last night was a sleepless night - Nathan up to pee every hour from the IV and me, well, I am kind of like the princess and the pea. Without the comfort of my bed combined with the nurses coming into the room often, I couldn't sleep. Nathan's blood work came back today showing no blast cells, so that was a good start to our day. To me this means the chemo is working on clearing the blasts out of the blood and Nathan is responding. Neutraphils dropped today and platelets slid a little further.
We were able to get another day pass so both Nathan and I napped at home. He wanted to fly a kite but there wasn't much wind so settled on trying to learn volleyball. We had supper with my brother and family, watched the Rider game and then went back to the hospital with Nathan.
Nathan starts the leg needles again tomorrow, so since platelets were low, they have decided to give him platelets around 1am. He has been handling the treatments well with no nausea so are grateful for that. He is really missing his brothers and is looking forward to being home when they come home. Just two more days of this treatment.
Last night was a sleepless night - Nathan up to pee every hour from the IV and me, well, I am kind of like the princess and the pea. Without the comfort of my bed combined with the nurses coming into the room often, I couldn't sleep. Nathan's blood work came back today showing no blast cells, so that was a good start to our day. To me this means the chemo is working on clearing the blasts out of the blood and Nathan is responding. Neutraphils dropped today and platelets slid a little further.
We were able to get another day pass so both Nathan and I napped at home. He wanted to fly a kite but there wasn't much wind so settled on trying to learn volleyball. We had supper with my brother and family, watched the Rider game and then went back to the hospital with Nathan.
Nathan starts the leg needles again tomorrow, so since platelets were low, they have decided to give him platelets around 1am. He has been handling the treatments well with no nausea so are grateful for that. He is really missing his brothers and is looking forward to being home when they come home. Just two more days of this treatment.
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