Nathan's uncle Perry and cousin Sam stopped by for a visit last Saturday when we were home on our weekend pass. They brought Nathan and Carter dry erase doodle boards that Nathan was quite excited about. When we went back into the hospital on Sunday Nathan insisted on taking this doodle board which was promptly forgotten when we got there.
Shortly after we got back to the hospital the nurses came in for some blood work to see if Nathan was OK for surgery Monday morning. Though Nathan had done quite well with drawing blood earlier he was quite done with needles. It was quite the production trying to get the needle in and blood drawn but it was finally done with a lot of sobbing and yelling. It hurt his parents to watch as well. Monday morning came and Nathan went through surgery to get his port installed not without a few issues that came with that. He also received his first dose of chemo that morning into his spine while he was still under anaesthesia for the surgery.
That night as I laid in the hospital bed with Nathan he asked for that doodle board. He laid there and drew while Shelley and I talked. In a few minutes he had a picture to show me - it was of a Dragon and a Knight. He then asked for my help to write around his picture, he wanted "once upon a time" which we wrote on the front and then "there was a Dragon and a Knight". After he was done that he said he was tired and so we got him ready for bed and moved the doodle board off to the side. That was the first time he had ever drawn a dragon or a knight.
It had been a very trying and emotional day for Shelley, Nathan and I. I sat in the chair in his room and decided to look through the things we received from the Cancer Center the Friday before. I read through a couple of pamphlets and then the next book in the pile was a children's story called "Hope and the Dragon". I picked it up immediately and read it. It was a story about a young boy who had cancer and surgery was the only way to remove it. Once he was put under for the operation he had a dream about fighting a dragon with only four things: hope, faith, courage and love. The book was written by a Saskatchewan boy who is still fighting cancer (his dragon). My emotional day got just a little bit more emotional.
When Nathan woke up the next morning and we were in quiet mode I suggested that we read this new book. Nathan listened pretty intently while I read (which he doesn't always do) and at the end he said "that was a pretty nice story can we read it again?" And so we did.
Here are some links for you to check out this book.
This is the page for the book.
This is an excerpt from the book.
This is a video with the author.
Here is a picture of Nathan's drawing and text.
Now I don't know what to make of this if anything; if these were all just coincidences or not but it seems like too close to be a coincidence for me...
Sunday, November 30, 2008
Saturday, November 29, 2008
Day 5 update
Well we had a night at home but I cannot say that we had more sleep than at the hospital. With Justin out of sorts and waking and Nathan calling for help in the middle of the night there was some bed switching and kid coddling through most of the night. I'm sure it will get better but we are going to have to figure out the best way to get some sleep.
It also didn't help us that Nathan had some side effects going on last night. His stomach was distended and as hard as a rock. It was like poking a piece of wood! Needless to say it concerned Shelley and I so that we had to test the doctor's promise of calling him at any time. Evidently this is a side effect of the steroid he is on. We are now told that his stomach will probably get quite distended and that his face and neck will be quite puffy. He said that sometimes the patients clothes don't fit after the four weeks of steroids. This effect does go down after he is off the steroids but he said it will take longer than the four weeks to lose it than it was to gain it. That situation was a reminder of no matter how much we weren't wild about being the hospital it was a little frightening to not have someone to immediately ask and discuss an unknown problem! Thankfully our doctor was quite patient with us last night and he is concerned about Nathan as well.
Our day today has been pretty good but you can tell our minds are elsewhere and sleep might be getting to us. After Carter's first reconciliation this morning we drove out to Stonebridge to look at our house that we hadn't seen in a couple of weeks. I promptly locked the keys in the van - sheesh! Many thanks again to Colette for coming to our rescue.
Wish us a better night tonight.
-Arron
It also didn't help us that Nathan had some side effects going on last night. His stomach was distended and as hard as a rock. It was like poking a piece of wood! Needless to say it concerned Shelley and I so that we had to test the doctor's promise of calling him at any time. Evidently this is a side effect of the steroid he is on. We are now told that his stomach will probably get quite distended and that his face and neck will be quite puffy. He said that sometimes the patients clothes don't fit after the four weeks of steroids. This effect does go down after he is off the steroids but he said it will take longer than the four weeks to lose it than it was to gain it. That situation was a reminder of no matter how much we weren't wild about being the hospital it was a little frightening to not have someone to immediately ask and discuss an unknown problem! Thankfully our doctor was quite patient with us last night and he is concerned about Nathan as well.
Our day today has been pretty good but you can tell our minds are elsewhere and sleep might be getting to us. After Carter's first reconciliation this morning we drove out to Stonebridge to look at our house that we hadn't seen in a couple of weeks. I promptly locked the keys in the van - sheesh! Many thanks again to Colette for coming to our rescue.
Wish us a better night tonight.
-Arron
Friday, November 28, 2008
Day 4 update
WE'RE HOME!
Nathan had a really big day today and we are finally home. Nathan and Shelley had a pretty decent night in the hospital which was good for what Nathan had in store for him. Shelley and I had to learn how to put Emla cream on Nathan. It is a topical anaesthetic that numbs the skin so that needles aren't quite as painful. Nathan was OK with that process as it was just a cream. Then it was more bloodwork but that is easier now that he has a port. After we got the results from that we had to go over to the Cancer Clinic for Nathan to get the "pokes" in his leg. We thought we had him well prepared for a couple of needles to the thighs but the sight of the needles freaked him out again. It was quite a process of me holding him tight while a nurse had either leg and they each gave him a needle to the thigh - it was almost too much for his mother to watch! So that was the PEG Asparginase chemo drug of day 4.
After his needles we were in observation in the cancer center to look for any adverse reaction to the medicine. Thankfully, Nathan had no reaction, not even red swelling where they poked him. The only signs left were the tweety bird bandaids that he was quite proud of. We were able to go back to his room after only an hour where we had to wait for some platelets. Nathan's platelets were getting low again (about 28)so he had another infusion today. Normally they wouldn't infuse at that level but since he was going home for the weekend they wanted to make sure he was at safe levels.
The next major thing was to flush his port system and remove the needle from the chest. The most painful part was taking the tape off. But the sight of the needle coming out didn't thrill Nathan that much either! We eventually got through that but his mother just about didn't... I know she is going to get better at this. After another hour of observation we were finally able to go home! Sign a bunch of papers, pack up and leave.
The kids were all pretty excited that Nathan was home. It was challenging to keep the excitement down to a manageable level. Now let's hope that we can keep on managing.
Our next big day will be day 8. We go back in to the Cancer Center on an outpatient basis. I'll give more details on what will happen later. Time to get back to my family!
-Arron
Nathan had a really big day today and we are finally home. Nathan and Shelley had a pretty decent night in the hospital which was good for what Nathan had in store for him. Shelley and I had to learn how to put Emla cream on Nathan. It is a topical anaesthetic that numbs the skin so that needles aren't quite as painful. Nathan was OK with that process as it was just a cream. Then it was more bloodwork but that is easier now that he has a port. After we got the results from that we had to go over to the Cancer Clinic for Nathan to get the "pokes" in his leg. We thought we had him well prepared for a couple of needles to the thighs but the sight of the needles freaked him out again. It was quite a process of me holding him tight while a nurse had either leg and they each gave him a needle to the thigh - it was almost too much for his mother to watch! So that was the PEG Asparginase chemo drug of day 4.
After his needles we were in observation in the cancer center to look for any adverse reaction to the medicine. Thankfully, Nathan had no reaction, not even red swelling where they poked him. The only signs left were the tweety bird bandaids that he was quite proud of. We were able to go back to his room after only an hour where we had to wait for some platelets. Nathan's platelets were getting low again (about 28)so he had another infusion today. Normally they wouldn't infuse at that level but since he was going home for the weekend they wanted to make sure he was at safe levels.
The next major thing was to flush his port system and remove the needle from the chest. The most painful part was taking the tape off. But the sight of the needle coming out didn't thrill Nathan that much either! We eventually got through that but his mother just about didn't... I know she is going to get better at this. After another hour of observation we were finally able to go home! Sign a bunch of papers, pack up and leave.
The kids were all pretty excited that Nathan was home. It was challenging to keep the excitement down to a manageable level. Now let's hope that we can keep on managing.
Our next big day will be day 8. We go back in to the Cancer Center on an outpatient basis. I'll give more details on what will happen later. Time to get back to my family!
-Arron
Day 3 - more
Well I'll still call it Day 3 though it is darn near day 4. We are still on track for getting out of the hospital tomorrow and Nathan is definitely looking forward to it. Nathan had a pretty good day, he walked for a few steps about a half dozen different times - he was happy and eager to show anyone new that he could now walk. Though the term walking is still a little subjective... he bears most of his weight on his left leg and kind of tiptoe/hops with his right. There obviously is still pain there but he is doing pretty good with it.
Nathan was also taken off of IV today so he had no more wires and was pretty happy about that. He continues to delight us with his good humour and candidness. He was very happy this evening that his big brother and cousins came to visit and play with him. You could see it in his face that it was something that he needed.
Medically we didn't learn anything new today but tomorrow (Friday) will be a huge day for him. It's hard to think that he is going to get sicker before he gets healthy and it is going to be hard to deal with. He is in such good spirits most of the time right now and is starting to walk that it seems wrong to make him sick to make him healthy. We know that we must but it is going to be very, very hard on his parents.
Thank you all for your continued prayers.
-Arron
Nathan was also taken off of IV today so he had no more wires and was pretty happy about that. He continues to delight us with his good humour and candidness. He was very happy this evening that his big brother and cousins came to visit and play with him. You could see it in his face that it was something that he needed.
Medically we didn't learn anything new today but tomorrow (Friday) will be a huge day for him. It's hard to think that he is going to get sicker before he gets healthy and it is going to be hard to deal with. He is in such good spirits most of the time right now and is starting to walk that it seems wrong to make him sick to make him healthy. We know that we must but it is going to be very, very hard on his parents.
Thank you all for your continued prayers.
-Arron
Thursday, November 27, 2008
Day 3 update
Nathan and I actually had a pretty decent night for a sleep in the hospital. He didn't wake up until 4am! He wanted to be up for the day but we managed to drift in and out of sleep until 7:30. He has been in great spirits after a good sleep. We've even tried walking for a couple of steps today... but not much more. He was done after those two steps.
Our new plan is that we will be in the hospital still tonight. Nathan will go get another chemo treatment (two needles into his thigh of pegasparganase) early tomorrow morning and if he reacts well to that we will be discharged tomorrow afternoon. Please cross your fingers and continue to pray for our big boy (he gets mad if I call him my little man now). He continues to bring smiles to the nurses around him, he teases them quite a lot - I don't know where he could have gotten that trait from! ;-)
-Arron
Our new plan is that we will be in the hospital still tonight. Nathan will go get another chemo treatment (two needles into his thigh of pegasparganase) early tomorrow morning and if he reacts well to that we will be discharged tomorrow afternoon. Please cross your fingers and continue to pray for our big boy (he gets mad if I call him my little man now). He continues to bring smiles to the nurses around him, he teases them quite a lot - I don't know where he could have gotten that trait from! ;-)
-Arron
Wednesday, November 26, 2008
Day 2 update
So now that we are into Induction phase our life is going to revolve around the 29 days for this phase. So Wednesday was Day 2. Nathan had a pretty decent day, he looks a little wiped and they were up really early this morning - 5am! So Nathan had a nap about 11:30.
We've had a steady IV going, mostly delivering fluids but he is also getting a strong antibiotic called Taz (I'm sure that's short for something). Nathan is also now an awesome pill taker. One of his meds is oral and Nathan had no problem swallowing the pills. The nurses were quite surprised as they have teenagers who still can't do that. We do have an amazing little boy.
I told Nathan about this blog and asked if there was anything that he wanted me to tell everyone. He said to tell everyone that he was able to stand today for a short period. Also that he had a very green tongue from a popsicle and that buddy Matt drew him a picture that had Nathan and Matt with Matt's pants falling down. When his Dad asked why, Matt's reply was that he wanted to make his buddy laugh and laugh Nathan did!
As for the expecting the unexpected we had a couple today. The first doctor, the oncology resident, came in and we talked about a few things and that we might be able to go home next week. About an hour later, Dr Ali came in and examined Nathan and said that we might be able to go home tomorrow! The doctors need to see how he is tomorrow and if all is well we might be able to go home. I think the more likely scenario though is that we would go home Friday. Either way Nathan was excited to hear that. If we get extended through the weekend it would be a bit of a letdown but it will only happen with Nathan's health in mind.
Nathan is getting a little bored of the hospital. We now have to have a movie playing, be coloring and perhaps playing the DS ALL AT THE SAME TIME!
Again, thanks to everyone who has brought us meals or offered to bring meals. Shelley and I are quite appreciative as we might be eating better than if we were cooking! Now to get the recipes for what has been coming....
We've had a steady IV going, mostly delivering fluids but he is also getting a strong antibiotic called Taz (I'm sure that's short for something). Nathan is also now an awesome pill taker. One of his meds is oral and Nathan had no problem swallowing the pills. The nurses were quite surprised as they have teenagers who still can't do that. We do have an amazing little boy.
I told Nathan about this blog and asked if there was anything that he wanted me to tell everyone. He said to tell everyone that he was able to stand today for a short period. Also that he had a very green tongue from a popsicle and that buddy Matt drew him a picture that had Nathan and Matt with Matt's pants falling down. When his Dad asked why, Matt's reply was that he wanted to make his buddy laugh and laugh Nathan did!
As for the expecting the unexpected we had a couple today. The first doctor, the oncology resident, came in and we talked about a few things and that we might be able to go home next week. About an hour later, Dr Ali came in and examined Nathan and said that we might be able to go home tomorrow! The doctors need to see how he is tomorrow and if all is well we might be able to go home. I think the more likely scenario though is that we would go home Friday. Either way Nathan was excited to hear that. If we get extended through the weekend it would be a bit of a letdown but it will only happen with Nathan's health in mind.
Nathan is getting a little bored of the hospital. We now have to have a movie playing, be coloring and perhaps playing the DS ALL AT THE SAME TIME!
Again, thanks to everyone who has brought us meals or offered to bring meals. Shelley and I are quite appreciative as we might be eating better than if we were cooking! Now to get the recipes for what has been coming....
Tuesday, November 25, 2008
Late Tuesday Update
Nathan had a pretty good day for his first day of chemotherapy. He had no major side effects today other than the occasional upset stomach. With his latest blood counts he is now a neutropenic little guy which is a fancy word we learned today meaning he has abnormally low neutrophils in his white blood count. Not a big deal as it was expected but it does mean he now needs a few extra precautions.
Your neutrophils are one of the bug fighting parts of your white blood cells, and so because they are low his ability to ward off infections is compromised. This means for anyone coming to visit please wash your hands thoroughly before coming and again when you get there. Also if you have visited anyone else in the hospital before seeing Nathan then please wear a gown and gloves when visiting Nathan. Lastly, if you have a cold or any other sickness, please send your wishes with someone else or via email. We thank everyone for helping us get Nathan better as soon as possible.
Nathan is spending his time doing puzzles, coloring (finished off a couple of books so we have to find more), playing his DS and watching movies. I'd like to finish off with this anecdote... as we were laying in bed this morning just waking up (about 6 am) Nathan turned to me and said "People love me don't they?" I chuckled and said "Yes they do, how did you know?" and his response was "because people keep visiting and bringing me things". Shelley and I would like everyone to know how much it means to us that our little angel knows that he is loved through all the kindness that you have shown. THANK YOU!!
Your neutrophils are one of the bug fighting parts of your white blood cells, and so because they are low his ability to ward off infections is compromised. This means for anyone coming to visit please wash your hands thoroughly before coming and again when you get there. Also if you have visited anyone else in the hospital before seeing Nathan then please wear a gown and gloves when visiting Nathan. Lastly, if you have a cold or any other sickness, please send your wishes with someone else or via email. We thank everyone for helping us get Nathan better as soon as possible.
Nathan is spending his time doing puzzles, coloring (finished off a couple of books so we have to find more), playing his DS and watching movies. I'd like to finish off with this anecdote... as we were laying in bed this morning just waking up (about 6 am) Nathan turned to me and said "People love me don't they?" I chuckled and said "Yes they do, how did you know?" and his response was "because people keep visiting and bringing me things". Shelley and I would like everyone to know how much it means to us that our little angel knows that he is loved through all the kindness that you have shown. THANK YOU!!
Nathan Tuesday Update
Today is Day 1 for Nathan's chemotherapy program. As I said he got the first part (spinal fluid injection) yesterday but today he received the first two medicines. He did really good swallowing the five pills (steroids) for the first time and then the chemo drug was given through an IV. We have a few days of that before the big milestone days of Day 8, 15 and 29. So far Nathan is in great spirits, with a few owly moments ... "it's my skin" has become a common refrain anytime someone (especially a nurse) wants to do something for him.
Additionally, we have been told that the first information about a two year program was incorrect. It is now a 3 1/2 year protocol that he is on. Those five phases (hopefully only 5) will take up the 3.5 years.
If you have any questions you can email me at my work email which I check at least once a day.
Additionally, we have been told that the first information about a two year program was incorrect. It is now a 3 1/2 year protocol that he is on. Those five phases (hopefully only 5) will take up the 3.5 years.
If you have any questions you can email me at my work email which I check at least once a day.
Monday, November 24, 2008
Nathan Monday Update
It's not even tomorrow and yet I already know more. If this is your first read you may want to start with the post below this one. Shelley and I spent over a hour with Dr Ali today and went over Nathan's treatment plan (protocol). The official paperwork came in and as they stated he has Standard Risk precursor B ALL.
There will be at least five phases of treatments and possibly seven depending on how he responds in a couple of them. The first phase that Nathan will go through is the Induction phase. We started part of it today and will do the rest of day 1 tomorrow.
The Induction phase consists of some oral chemo drugs, IV chemo drugs and the spinal chemo drug that he had today. This phase last for 4 weeks and the big days are 8, 15 and 29. Right now he has approximately 95% blasts in his blood (a healthy person has 0). After 8 days we hope that he has less than 5%, but he may not. After 15 days we really hope that he has less than 5% and would then be classed as a rapid early responder. If not, then at 29 days if he has less than 5% then he would be classed as a slow early responder. However, if unfortunately after 29 days he still has more than 5% then we start an additional phase. Nathan may not have to be in the hospital for the full four weeks. Once he becomes stable (good blood counts, no infections, no fever, good appetite, etc) we can come home and continue on an outpatient basis - but no guess on when that might happen.
For you gardeners we can describe it this way. Your bone marrow is a flower garden with lots of different nice flowers. Right now Nathan's flowers are getting choked out by lots and lots of weeds (blasts). His flower garden is overgrown with them! So we are going to spray some Round Up (chemo), and try to kill off the weeds and unfortunately some flowers. The hope is that his gardener (bones) will replant the flowers and then the flowers will be able to compete with the weeds and keep the weeds (once they are under 5%) under control themselves. As we all know, some weeds will be able to hide from the Round Up so we will be using other chemicals as well (other chemo drugs). Darn weeds.
time for supper thanks to the Bergs, take care everyone,
-Arron
There will be at least five phases of treatments and possibly seven depending on how he responds in a couple of them. The first phase that Nathan will go through is the Induction phase. We started part of it today and will do the rest of day 1 tomorrow.
The Induction phase consists of some oral chemo drugs, IV chemo drugs and the spinal chemo drug that he had today. This phase last for 4 weeks and the big days are 8, 15 and 29. Right now he has approximately 95% blasts in his blood (a healthy person has 0). After 8 days we hope that he has less than 5%, but he may not. After 15 days we really hope that he has less than 5% and would then be classed as a rapid early responder. If not, then at 29 days if he has less than 5% then he would be classed as a slow early responder. However, if unfortunately after 29 days he still has more than 5% then we start an additional phase. Nathan may not have to be in the hospital for the full four weeks. Once he becomes stable (good blood counts, no infections, no fever, good appetite, etc) we can come home and continue on an outpatient basis - but no guess on when that might happen.
For you gardeners we can describe it this way. Your bone marrow is a flower garden with lots of different nice flowers. Right now Nathan's flowers are getting choked out by lots and lots of weeds (blasts). His flower garden is overgrown with them! So we are going to spray some Round Up (chemo), and try to kill off the weeds and unfortunately some flowers. The hope is that his gardener (bones) will replant the flowers and then the flowers will be able to compete with the weeds and keep the weeds (once they are under 5%) under control themselves. As we all know, some weeds will be able to hide from the Round Up so we will be using other chemicals as well (other chemo drugs). Darn weeds.
time for supper thanks to the Bergs, take care everyone,
-Arron
Nathan
Our little family would really like to thank everyone for their prayers, thoughts and offers of help. We really appreciate it! As I'm sure you can understand it is very hard to try to talk to everyone by phone or in person to keep everyone updated on Nathan's progress. So, Shelley and I (mostly me, I'm guessing) will try to keep everyone up to date through this blog. We will try out best to do it daily but we might not be able to.
The first update is that we still don't know everything! ;-) As some of you have heard me say (or type), I sure hope to know more tomorrow....
The official written diagnosis has not arrived yet, however the lab has phoned our doctor, Dr Kaiser Ali, to tell him that Nathan has Standard Risk B-precursor Acute Lymphoblastic Leukemia (ALL). ALL is a cancer of the blood cells. It develops in the bone marrow and is a cancer in which young abnormal infection-fighting white blood cells, called blasts, crowd out normal bone marrow cells and spread into the blood stream. Blasts can also spread to the brain, spinal cord, testicles and other organs.
Nathan had surgery this morning to insert a port (port-a-catheter) into his chest. It gives the doctors a simple way to deliver medications, fluids, and blood products into the bloodstream. It can also be used to obtain blood samples. We think this will be very helpful as Nathan is already very tired of needles.
Nathan also had his first chemotherapy injection at the same time as the port insertion. He had medicine inserted directly into his spinal fluid to prevent the leukemia from transferring there.
We are to meet with Dr Ali this afternoon to go through the protocol (treatment plan) for Nathan. The first phase of treatment is called Induction and it lasts 5-7 weeks. During this phase we hope that all or most of the cancerous cells will be eradicated and that Nathan will reach remission. I do not know how much longer we will be in the hospital for, it depends on when Nathan is stable. If you ask me, he already is a pretty stable boy!! He has retained his sense of humor and continues to be a good, albeit impatient, patient.
It is time for me to go as Nathan is waking up from his nap. Please continue to pray for us.
-Arron
The first update is that we still don't know everything! ;-) As some of you have heard me say (or type), I sure hope to know more tomorrow....
The official written diagnosis has not arrived yet, however the lab has phoned our doctor, Dr Kaiser Ali, to tell him that Nathan has Standard Risk B-precursor Acute Lymphoblastic Leukemia (ALL). ALL is a cancer of the blood cells. It develops in the bone marrow and is a cancer in which young abnormal infection-fighting white blood cells, called blasts, crowd out normal bone marrow cells and spread into the blood stream. Blasts can also spread to the brain, spinal cord, testicles and other organs.
Nathan had surgery this morning to insert a port (port-a-catheter) into his chest. It gives the doctors a simple way to deliver medications, fluids, and blood products into the bloodstream. It can also be used to obtain blood samples. We think this will be very helpful as Nathan is already very tired of needles.
Nathan also had his first chemotherapy injection at the same time as the port insertion. He had medicine inserted directly into his spinal fluid to prevent the leukemia from transferring there.
We are to meet with Dr Ali this afternoon to go through the protocol (treatment plan) for Nathan. The first phase of treatment is called Induction and it lasts 5-7 weeks. During this phase we hope that all or most of the cancerous cells will be eradicated and that Nathan will reach remission. I do not know how much longer we will be in the hospital for, it depends on when Nathan is stable. If you ask me, he already is a pretty stable boy!! He has retained his sense of humor and continues to be a good, albeit impatient, patient.
It is time for me to go as Nathan is waking up from his nap. Please continue to pray for us.
-Arron
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