Wed was the last day of Nevan's Steroid based Chemotherapy... YAY!! These mood swings were feeling like they were never going to end! It does take a few days for the steroids to clear themselves from his system, but soon we should see an improvement in his attitude as well as a break on the insane cravings for Mr Noodle packages!
That morning we headed in to clinic for what we thought was going to be Day 32... our final day of the induction phase. We were supposed to get a fingerpoke and then be admitted over night for sedation the next day so Nevan could have his High dose of Chemo, lumbar puncture and Bone Marrow Biopsy. We got through the finger poke, but when Nevan's counts came back, Judy, his clinic nurse let us know that they were too low to proceed with Chemo tomorrow. He has developed a cough and his neutrophils (immunity) counts are too low to get him through such a high dose of chemo, so we were sent home. His RBC and his Platelettes however were looking good... so it is just a matter of time that his body will make some more neutrophils as well.
Well it is Friday morning and we just woke up at the hospital! What happened you ask? My baby boy's Bone Marrow has kicked in, that's what happened!! Miraculously Nevan's phagocyte count has spiked to 2.4.... Never has it been over 0.1! This is a good indication that Nevan is in remission, but the results from the bone marrow biopsy he had yesterday will tell us for sure. The next course of action is high dose methotrexate. This is the tough one... Increased mouth sores, vomiting, headaches. Nevan will remain in the hospital until he has passed all the drug through his system. Anything left or not passed could severely damage his kidneys. This means we will be at the hospital anywhere between 48 hrs to 1 week. So far I can definitely tell that the steroids are wearing off and Nevan's smiles are increasing immensely.... I needed those smiles! Unfortunately we are starting another course of higher dose steroids soon. They may not have the same side effects so we will have to wait and see.
Along with the bone marrow biopsy yesterday, Nevan also had intra-thecal chemo, a new NG tube put in and a dressing change for his PICC line. They had to put special bandages around his PICC line this time because the type of tape that has held it in place up until now along with the many changes has caused his skin to become raw and thin and at next change would likely have pulled off his skin in the process. With his neutrophil count higher now, we can request the insertion of a more permanent port put I to his chest. This will sit under the skin and once healed, will have no dressing changes. They will access the port each time using numbing cream for his skin and it will administer his meds right above his heart as needed. With the protection of his skin, he will also be able to take a regular bath and maybe even go for a swim next summer!
Well, it is around 10am and I am just waiting for his Dr to come in and let us know the test results of the bone marrow biopsy. Stay tuned.....
Cute story of the day:
Nylah speak!!
"wawa" = Nevan
"Norwalk Ally" = Margaret Ellen (her teacher at daycare)
"Bus wound and wound" = Wheels on the bus
"Dinky Dinky tootsies" = Skinamarinky Dinky Dink with my feet
"No Mucousy!" = no Music.... Doesn't like the radio on in the car
Friday, August 24, 2012
Thursday, August 23, 2012
metha what? (dad)
Day 32...
The plan as we understood it was to have Nevan spend 2 days in the hospital, this wednesday and thursday. We went for his finger poke Wednesday morning as scheduled. He was a brave little boy as always. He cries about it everytime yet still holds out his finger and allows the nurse to do her thing. We get upstairs to clinic, grab his wrist band and take a number. I walk over and write his name on the number as well as his initials NHL. Nurse Judy comes to talk to us. She tells us that his blood counts are still too low to proceed as scheduled. We will have to go home and come back tomorrow morning. She sends us for another finger poke Thursday morning to see if his numbers have come up. It's rare but if they do we can proceed right away. If not we must wait yet another week. Regardless he will be given another special sleep and a bone marrow biopsy will be done and we will have results within 24 hours.
The results will be whether he is in remission or not. Stay tuned for a specially named post REMISSION!!
Today is Thursday and we went for finger poke first thing. His numbers are not only up but the one we were watching more than doubled! In short his body is ready for the battle ahead. My brave little boy is more than brave, he`s a warrior. Today he had a special sleep where they gave him a bone marrow biopsy, lumbar puncture, PICC dressing change and a new NG tube put in. Tomorrow we should get the results from the biopsy. He will also finish the second phase of chemo. Nevan will receive an injection of High Dose Methotrexate. Followed by a 23hr IV drip. He will then stay in hospital for as many more days as necessary to pee out the chemical as it is extremely toxic. We will update blog as soon as we have results and more news...
The plan as we understood it was to have Nevan spend 2 days in the hospital, this wednesday and thursday. We went for his finger poke Wednesday morning as scheduled. He was a brave little boy as always. He cries about it everytime yet still holds out his finger and allows the nurse to do her thing. We get upstairs to clinic, grab his wrist band and take a number. I walk over and write his name on the number as well as his initials NHL. Nurse Judy comes to talk to us. She tells us that his blood counts are still too low to proceed as scheduled. We will have to go home and come back tomorrow morning. She sends us for another finger poke Thursday morning to see if his numbers have come up. It's rare but if they do we can proceed right away. If not we must wait yet another week. Regardless he will be given another special sleep and a bone marrow biopsy will be done and we will have results within 24 hours.
The results will be whether he is in remission or not. Stay tuned for a specially named post REMISSION!!
Today is Thursday and we went for finger poke first thing. His numbers are not only up but the one we were watching more than doubled! In short his body is ready for the battle ahead. My brave little boy is more than brave, he`s a warrior. Today he had a special sleep where they gave him a bone marrow biopsy, lumbar puncture, PICC dressing change and a new NG tube put in. Tomorrow we should get the results from the biopsy. He will also finish the second phase of chemo. Nevan will receive an injection of High Dose Methotrexate. Followed by a 23hr IV drip. He will then stay in hospital for as many more days as necessary to pee out the chemical as it is extremely toxic. We will update blog as soon as we have results and more news...
Picture Post: The Journey Begins
Can still flash the cutest smile ever!
A very careful and gentle bath
Driving Cars on Daddy's Head
Daddy and Nevan snuggling in his hospital bed
Nevan loved this spiderman balloon and gift basket a good friend sent his first night there
One of the first nights when the hospital was still a novelty!
One of Nevan's Favourite people... Nana #2
Getting ready to go for a walk
Me and Nevan at the hospital
Grandma, Grandpa, Auntie Yvonne and Uncle Dave came for a visit
So peaceful
Daddy made Chocolate Chip Pancakes for Lunch!
Me and Nylah
A Silly Putty Moustache
Nevan loves his cousin Elliott too!
Picture Post: The Kiddies
One of my favourite baby pics of Nevan - 8months old
Climbing Trees at Churchill Park
Showing off the pearly whites!
Nevan just finished the biggest chocolate ice cream cone ever at Grand Bend!
Nevan and Nylah
Christmas Jammies
Fun at Chuck E Cheese
Watching Daddy fish at Shades Mill
One of Nevan's Favourite Places: The ROM
Nevan: 2 years, Nylah: 5 weeks
Nylah at 1 year old
Kisses from Big Bro
A dinosaur and a strawberry
2 tree climbers!
Picture time in the back yard
Playing on the swings in January!
Going for a ride in the dingy at Shades Mill
Picture Post: Our Family
 |
| All of us at Nevan's School BBQ |
 |
| Nylah's Second Birthday |
 |
| Our Whole Family |
Me and Nylah at the ROM
Craig and Nylah
Nevan helping Nana blow out his candles
Nevan, Nylah, Nana and Nanima
Our Family
Nevan and Nanima
Me and Nevan at the Elmira Syrup
Us at Ontario Place
Nevan's first day of Junior Kindergarten
The Day Nevan Became a Big Brother
Our Family
Nevan and Grandpa
Nevan and Grandma
Nanima and the Kids
Buuuuuzzzzzzzzzz! (dad)
Well every summer I usually take the clippers to my hair but I usually use the number one attachment. This time I went all the way. Last week we gave Nevan the hair loss talk. He seemed okay with losing it naturally and didn't want to cut it. I think at this point he realizes it's the least of his worries. Either way I promised him I'd cut mine so we would look the same. Of course I gave him the first chop. I could have stopped at just the first strip after seeing the big smile it gave him. He proceeded to take more off the top. I let mommy do the sides and back. No need to lose an ear too! 33 years and not so much as a receding hairline. I guess the bald by 30 curse has been lifted in our family.
Wednesday, August 22, 2012
When it rains it pours
Since my last post, where I ended with a few quick lines about arranging fundraising events. I have recieved e-mails, texts and phone calls about so many people willing to help us and some who have already initiated their own fundraising efforts on our behalf.... I can't expressed how touched we are. Our expectation was to go ahead and inform everyone of how our financial situation has just crumbled since Nevan got sick and ask our good friends for some much needed help through this. Without an explanation, without even asking, friends and family are pulling together to help us get back up on our feet, obviously caring enough to let us know that no explanation is necessary.... We however feel the need to fill you in anyway....
I know Craig posted some of the details about our dealings with our insurance company, EI etc, so I won't be too long winded. The order of events were like this:
1. In May Craig signed up both kids for Critical Care insurance through his employer (Toyota) benefit plan. A process which included checking off a box on the computer.
2. We bought and moved into a larger house on June 8th.
3. Nevan was showing behavioural issues indicating he was not adjusting well to my long work hours. I gave notice to my work that I was going to drop down to part time to spend more time with him. No clue at this point that his behaviour changes were from the Leukemia.
4. Craig had to go off on Short Term Disability for his Leg. In which he has a painful condition that makes it very difficult for him to be able to stand and walk for extended periods of time. All medical appointments were completed, paper work filled in and the claim was approved. Treatment: Surgery. The waiting period is 1 year to get in to see a surgeon and then another possible year before Surgery can be completed.
5. Nevan is diagnosed with Leukemia early Morning on Friday July 13th. I contacted my work and let them know the situation. I left my job so I could stay home and care for Nevan as he now needs 24 hour care.
6. Craig contacted his insurance company to collect on the critical care insurance that he signed up for in May. The insurance company took down all relavant information, sent us out a package for us to fill out, had us get Nevan's Oncologist to fill out paperwork and had us forward Nevan's medical records for review. (alot of time and effort for us to get this done considering the situation we were just thrown into). After all was done and handed in, we get a phone call letting us know that Nevan's policy is now null and void because he was diagnosed with Cancer within a 90 day moritorium they have written in the fine print (yet did not make us aware of when we signed up for this policy). I am angry that such a stupid policy even exists, but even so... The insurance company lacked the morality and common sense to make us aware of this when we initially called to make our claim. They took away precious time that we could have been spending with Nevan and the rest of our family, that the oncologist could have been tending to the other important things he does in a day, that our GP could have been seeing other patients only to turn us down for a reason that existed the moment we picked up the call and made the first contact with them. The insurance company padded their billion dollar pockets with our full premium while providing us partial coverage without fully informing us of this 'small' point.
7. This same insurance company called Craig shortly there after to 'interview' him about his leg claim only to let him know that they are ending his claim because they feel he has had enough time to 'recover from his illness'. Apparently the insurance company is legally able to disregard the tests, letters and recommendations from Craig's Drs that say the only possibly treatment is surgery, in order to form their own conclusions about what an appropriate treatment (in this case 2 weeks of rest) should be. UGHH... Now Craig is in the appeal process along with his Dr to again explain to this insurance company that he cannot work without treatment on his leg... but until this process is completed, they will not provide any payment.
8. I have applied for illness benefits at the recommendation of Nevan's Social worker. She said all her kids parents do this and collect the 15 weeks of illness benefits they are entitled do based on the fact that the amount of stress they are under is causing them to be incabable of working. I applied for this benefit along with a medical certificate from my Dr stating the situation and the immense stress I am currently under, however Service Canada has said that this will be a long shot because it is my son that is sick... not me. Our social worker was floored when we told her and has never heard such a thing. The decision is still being processed, so lets cross our fingers that something will come together here and we will be able to float for a few more months at least.
Ok, so perhaps this was a little long winded. Craig and I are just absolutely beside ourselves that on top of dealing with the stress of Nevan being so sick, we are being forced to deal with all of this financial nonsense. It seems that all of these policies are in place to give people piece of mind while they dont need help, however once they do need assistance it is only paid out if there are no loop holes they can use to get out of it. I am not sure the stress level in our house could get any higher... Thank you again to all of our friends and family who are putting in so much effort to try and bring it down.
Cute Story of the Day:
Nevan: "Mommy, I don't think I will be eating asking for any more noodles today"
Me: "That's good Nevan because I don't think I will be giving you any more noodles today!"
Nevan: " I know, I eat too much noodles and then my tummy hurts"
Me: "Yup... You can have noodles, you just have to eat other things throughout the day as well"
Nevan: "I know..."
30 min or so pass....
Nevan: "Mommy, can I have some more noodles?"
Me: "Sorry Nevan, you had a tonne of noodles today. If you want more noodles, you will have to eat something else first"
Nevan bursts out crying!
Me: "Nevan, remember we talked about this? Other foods, then Noodles for desert... "
Nevan: still crying..."That was so long ago mommy!! Look how long I went without noodles!"
ahhhhhhhh steroids!
I know Craig posted some of the details about our dealings with our insurance company, EI etc, so I won't be too long winded. The order of events were like this:
1. In May Craig signed up both kids for Critical Care insurance through his employer (Toyota) benefit plan. A process which included checking off a box on the computer.
2. We bought and moved into a larger house on June 8th.
3. Nevan was showing behavioural issues indicating he was not adjusting well to my long work hours. I gave notice to my work that I was going to drop down to part time to spend more time with him. No clue at this point that his behaviour changes were from the Leukemia.
4. Craig had to go off on Short Term Disability for his Leg. In which he has a painful condition that makes it very difficult for him to be able to stand and walk for extended periods of time. All medical appointments were completed, paper work filled in and the claim was approved. Treatment: Surgery. The waiting period is 1 year to get in to see a surgeon and then another possible year before Surgery can be completed.
5. Nevan is diagnosed with Leukemia early Morning on Friday July 13th. I contacted my work and let them know the situation. I left my job so I could stay home and care for Nevan as he now needs 24 hour care.
6. Craig contacted his insurance company to collect on the critical care insurance that he signed up for in May. The insurance company took down all relavant information, sent us out a package for us to fill out, had us get Nevan's Oncologist to fill out paperwork and had us forward Nevan's medical records for review. (alot of time and effort for us to get this done considering the situation we were just thrown into). After all was done and handed in, we get a phone call letting us know that Nevan's policy is now null and void because he was diagnosed with Cancer within a 90 day moritorium they have written in the fine print (yet did not make us aware of when we signed up for this policy). I am angry that such a stupid policy even exists, but even so... The insurance company lacked the morality and common sense to make us aware of this when we initially called to make our claim. They took away precious time that we could have been spending with Nevan and the rest of our family, that the oncologist could have been tending to the other important things he does in a day, that our GP could have been seeing other patients only to turn us down for a reason that existed the moment we picked up the call and made the first contact with them. The insurance company padded their billion dollar pockets with our full premium while providing us partial coverage without fully informing us of this 'small' point.
7. This same insurance company called Craig shortly there after to 'interview' him about his leg claim only to let him know that they are ending his claim because they feel he has had enough time to 'recover from his illness'. Apparently the insurance company is legally able to disregard the tests, letters and recommendations from Craig's Drs that say the only possibly treatment is surgery, in order to form their own conclusions about what an appropriate treatment (in this case 2 weeks of rest) should be. UGHH... Now Craig is in the appeal process along with his Dr to again explain to this insurance company that he cannot work without treatment on his leg... but until this process is completed, they will not provide any payment.
8. I have applied for illness benefits at the recommendation of Nevan's Social worker. She said all her kids parents do this and collect the 15 weeks of illness benefits they are entitled do based on the fact that the amount of stress they are under is causing them to be incabable of working. I applied for this benefit along with a medical certificate from my Dr stating the situation and the immense stress I am currently under, however Service Canada has said that this will be a long shot because it is my son that is sick... not me. Our social worker was floored when we told her and has never heard such a thing. The decision is still being processed, so lets cross our fingers that something will come together here and we will be able to float for a few more months at least.
Ok, so perhaps this was a little long winded. Craig and I are just absolutely beside ourselves that on top of dealing with the stress of Nevan being so sick, we are being forced to deal with all of this financial nonsense. It seems that all of these policies are in place to give people piece of mind while they dont need help, however once they do need assistance it is only paid out if there are no loop holes they can use to get out of it. I am not sure the stress level in our house could get any higher... Thank you again to all of our friends and family who are putting in so much effort to try and bring it down.
Cute Story of the Day:
Nevan: "Mommy, I don't think I will be eating asking for any more noodles today"
Me: "That's good Nevan because I don't think I will be giving you any more noodles today!"
Nevan: " I know, I eat too much noodles and then my tummy hurts"
Me: "Yup... You can have noodles, you just have to eat other things throughout the day as well"
Nevan: "I know..."
30 min or so pass....
Nevan: "Mommy, can I have some more noodles?"
Me: "Sorry Nevan, you had a tonne of noodles today. If you want more noodles, you will have to eat something else first"
Nevan bursts out crying!
Me: "Nevan, remember we talked about this? Other foods, then Noodles for desert... "
Nevan: still crying..."That was so long ago mommy!! Look how long I went without noodles!"
ahhhhhhhh steroids!
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