Friday
Home
Weight: 15 Kg
Well, we are all home!! In fact, you and dad came back home on Monday, after receiving your last chemo treatment at 2:45 am, Monday morning. It was celebrated with a song and cheers from your nurses, even if you didn't want to be a part of it, it was exciting for your dad and I. 7 months ago I couldn't even fathom this point in your journey, but we all made it and more importantly you fought your way through it. You are a total champion and proved to dad and I that you have a inner ninja inside of you and when times were tough you continued to be strong. I know that your future is so big and bright and with your strength you will be able to over come anything!! You make your dad and I so proud!!
Now that we are home we still need to get regular CBC's done to keep tabs on your counts. You had blood work on Wed and today and so far you have only dropped a little. I am sure next week you will be at your lowest and we will possibly need a transfusion. I pray that you are able to stay healthy during this next week, especially since there is so much sickness around you.
So, what's next? Your primary nurse is working on scheduling a multitude of test for possibly the middle of November, once your counts have fully recovered. You will require sedation for many of the tests so we requested that they be scheduled back to back, if possible, so you would only require one sedation. After the tests, it will be about 2 weeks until we can go back to Calgary and receive the results. Waiting right now is a killer. I want to know right now what the results are, we have come so far already and I just want to know that we can move forward. With positive news, we can then get your central line (Broviac) removed, which will make life a lot easier for you. It will be nice not having to check your locks every hour, or remind you every half and hour to watch your lines and most importantly allowing you to participate in activities, like swimming, which we haven't done since Feb. So I guess we wait, patiently.
Friday, October 25, 2013
Sunday, October 20, 2013
October 20th, 2013
Sunday
Unit 1
Weight: 14.9 Kg
Nurses: Angie/Makayla
Just a short post with a picture. We have waited so long for this day and now it is finally here!!
Unit 1
Weight: 14.9 Kg
Nurses: Angie/Makayla
Just a short post with a picture. We have waited so long for this day and now it is finally here!!
Love Mom
Thursday, October 17, 2013
The Last Dance
October 17, 2013
Unit 1 Room 1112 (new one for us)
Weight 15.4 Kg
Nurse: Lauren
ANC: 2500
That's right, we have made it back to hospital on the 16th of October to start our final round of Chemo and so far you have slept though every treatment this round. Your mom, our nurse and doctor were all caught off guard when your counts had recovered on Tuesday; the call did not come in till after 4 so the race was on to be ready. However, coming this early also means we are on isolation, you developed a runny nose over the weekend, which is not the usual clear stuff. No suprise as this month you stubbed your toe resulting in a fever and 3 nights in hospital, then you got your hand slammed in van door meaning a ER visit and now as I sit here and type this you have spiked a fever. You don't want to just ride things out peacefully.
The main thing we are focusing on is that in about a month from now you should be done all your tests and your lines should be out, that is the plan. Our primary nurse hopes to book a sequence of exams (Bone Scan, MRI, X-rays, Bone Marrow Aspiration and Marrow Biopsy, EKG and Echo cardiogram) for one day of tests and hopefully just one sedation. She has also written the consult to have your Broviac removed in Medicine Hat, as we will need to leave your line in to use for blood tests, blood products, sedations etc, until we know you are fully recovered and stable. Until then, like when your youngest child is growing up we hope to experiencing a lot of lasts; last few nights in this bed, last time sleeping hooked up to IV's, some good bye's to great nurses and friends, last time peeing in disposable urinals, last pizza night, last time for Chemo drugs.... I would be lying if I said I was not a little sad to be saying goodbye to a number of these things.
Over the past few weeks I have been thinking a lot about how far we have come, 6 months ago I could not even imagine a last Chemo. Now after all you have been through and once again having the energy to be a 3 year old (read constant worry and trouble) its hard to believe we are still doing Chemo. Relative to a number of people we have met on this journey, you are so far one of the lucky ones. I read a lot of blogs these days and spend plenty of sleepless nights worried others Journey's may not be as smooth as ours. I know better than to assume we are in the clear, beyond the number of long term side effects of your Chemo and the chances of re-occurrence, I struggle to picture what normal life will be.
We are also embracing all the changes in our lives for the positive, the warm embrace of close friends, family, colleagues and complete strangers is infectious. This Journey for our family taught us an invaluable lesson about people, a vision for the world we forever want to be a part of. It can be hard to say no to so many great charities but one person can't say yes to them all. I have a change perspective though for some great charities that have such a profound effect on many peoples lives. Causes Such as Alberta Children's Hospital, Make-A-Wish Foundation, Ronald McDonald House and the Canadian Blood Bank just to name a few. We have been blessed to meet a variety of people from all over Western Canada with a spectrum of ailments; but we all shared a common compassion for the inner strength of our children and the special people and facilities that took care of them.
Love,
Dad
Unit 1 Room 1112 (new one for us)
Weight 15.4 Kg
Nurse: Lauren
ANC: 2500
That's right, we have made it back to hospital on the 16th of October to start our final round of Chemo and so far you have slept though every treatment this round. Your mom, our nurse and doctor were all caught off guard when your counts had recovered on Tuesday; the call did not come in till after 4 so the race was on to be ready. However, coming this early also means we are on isolation, you developed a runny nose over the weekend, which is not the usual clear stuff. No suprise as this month you stubbed your toe resulting in a fever and 3 nights in hospital, then you got your hand slammed in van door meaning a ER visit and now as I sit here and type this you have spiked a fever. You don't want to just ride things out peacefully.
The main thing we are focusing on is that in about a month from now you should be done all your tests and your lines should be out, that is the plan. Our primary nurse hopes to book a sequence of exams (Bone Scan, MRI, X-rays, Bone Marrow Aspiration and Marrow Biopsy, EKG and Echo cardiogram) for one day of tests and hopefully just one sedation. She has also written the consult to have your Broviac removed in Medicine Hat, as we will need to leave your line in to use for blood tests, blood products, sedations etc, until we know you are fully recovered and stable. Until then, like when your youngest child is growing up we hope to experiencing a lot of lasts; last few nights in this bed, last time sleeping hooked up to IV's, some good bye's to great nurses and friends, last time peeing in disposable urinals, last pizza night, last time for Chemo drugs.... I would be lying if I said I was not a little sad to be saying goodbye to a number of these things.
Over the past few weeks I have been thinking a lot about how far we have come, 6 months ago I could not even imagine a last Chemo. Now after all you have been through and once again having the energy to be a 3 year old (read constant worry and trouble) its hard to believe we are still doing Chemo. Relative to a number of people we have met on this journey, you are so far one of the lucky ones. I read a lot of blogs these days and spend plenty of sleepless nights worried others Journey's may not be as smooth as ours. I know better than to assume we are in the clear, beyond the number of long term side effects of your Chemo and the chances of re-occurrence, I struggle to picture what normal life will be.
We are also embracing all the changes in our lives for the positive, the warm embrace of close friends, family, colleagues and complete strangers is infectious. This Journey for our family taught us an invaluable lesson about people, a vision for the world we forever want to be a part of. It can be hard to say no to so many great charities but one person can't say yes to them all. I have a change perspective though for some great charities that have such a profound effect on many peoples lives. Causes Such as Alberta Children's Hospital, Make-A-Wish Foundation, Ronald McDonald House and the Canadian Blood Bank just to name a few. We have been blessed to meet a variety of people from all over Western Canada with a spectrum of ailments; but we all shared a common compassion for the inner strength of our children and the special people and facilities that took care of them.
Love,
Dad
Friday, October 11, 2013
October 10th, 2013
Thursday
Home
Weight: 15.1 Kg
ANC: 531
I know that it has been awhile since I last updated your blog, but things have been busy. A week ago, tomorrow, your CBC came back indicating a lower hemoglobin so you needed to go to MHRH for a blood transfusion. We were in at lunch and home before bed. I was hoping that we could avoid a transfusion this round but we needed to have just the one in the end.
On Tuesday, we had CBC to ensure your counts would be high enough to start you last cycle of maintence on Wednesday. However, as we have started to expect, your ANC had dropped from 3000 to 531 in 48 hours. We need an ANC of 1000 to start chemo. They do really believe your marrow is tired and are hoping for a recovery in counts by next week. We were packed and ready but I guess you were meant to stay home for Thanksgiving. We need to always see the positive or else we can get pretty down and disappointed in things (at least that is what I keep telling myself). I truly hope we can start next week and avoid any other delays.
We are getting into a routine at home. We spend time doing small activities and even a little baking. With your counts being lower and the weather colder outside, which requires us to be inside for most of the day, I have to make sure the house is pretty clean. This is not so easy to do with 5 people in and out of the house all day. I try to make sure all main surfaces and the toy room are disinfected and your room is always wiped down. It scares me to hear about everything that is going around in the schools and I pray that your sisters don't come home with anything for at least another month. It is so important that everyone around you is healthy, which isn't easy because when we are home we love to visit with family and friends.
As we go into the Thanksgiving weekend, I am reflecting on all I am thankful for. I have never felt so thankful as I do this year. I feel like I could go on and on for everyone and everything I am thankful for and there just isn't words or actions that can portray how I feel. The year 2013 has definitely been the hardest year ever, but it has also given us a new appreciation for life. I will never take my health or the health of my family for granted again. I am so thankful for the amazing specialists that have become essential to our family in the last couple of months...Surgeons, Oncologists, Family Doctors, Pediatricians and Nurses!! Because of these amazing people I am able to live pain free and you are in your last cycle of treatment, there is nothing more I could ask for. I need to end by saying I am most thankful for God, for listening to our millions of prayers and for looking over our family....thank you, thank you, thank you.
Love you buddy,
Mom
Home
Weight: 15.1 Kg
ANC: 531
I know that it has been awhile since I last updated your blog, but things have been busy. A week ago, tomorrow, your CBC came back indicating a lower hemoglobin so you needed to go to MHRH for a blood transfusion. We were in at lunch and home before bed. I was hoping that we could avoid a transfusion this round but we needed to have just the one in the end.
On Tuesday, we had CBC to ensure your counts would be high enough to start you last cycle of maintence on Wednesday. However, as we have started to expect, your ANC had dropped from 3000 to 531 in 48 hours. We need an ANC of 1000 to start chemo. They do really believe your marrow is tired and are hoping for a recovery in counts by next week. We were packed and ready but I guess you were meant to stay home for Thanksgiving. We need to always see the positive or else we can get pretty down and disappointed in things (at least that is what I keep telling myself). I truly hope we can start next week and avoid any other delays.
We are getting into a routine at home. We spend time doing small activities and even a little baking. With your counts being lower and the weather colder outside, which requires us to be inside for most of the day, I have to make sure the house is pretty clean. This is not so easy to do with 5 people in and out of the house all day. I try to make sure all main surfaces and the toy room are disinfected and your room is always wiped down. It scares me to hear about everything that is going around in the schools and I pray that your sisters don't come home with anything for at least another month. It is so important that everyone around you is healthy, which isn't easy because when we are home we love to visit with family and friends.
As we go into the Thanksgiving weekend, I am reflecting on all I am thankful for. I have never felt so thankful as I do this year. I feel like I could go on and on for everyone and everything I am thankful for and there just isn't words or actions that can portray how I feel. The year 2013 has definitely been the hardest year ever, but it has also given us a new appreciation for life. I will never take my health or the health of my family for granted again. I am so thankful for the amazing specialists that have become essential to our family in the last couple of months...Surgeons, Oncologists, Family Doctors, Pediatricians and Nurses!! Because of these amazing people I am able to live pain free and you are in your last cycle of treatment, there is nothing more I could ask for. I need to end by saying I am most thankful for God, for listening to our millions of prayers and for looking over our family....thank you, thank you, thank you.
Love you buddy,
Mom
Thursday, October 3, 2013
October 3rd, 2013
Thursday
Home
Weight: 14 Kg
WBC: 4.3
You made it home on Monday after 48 hours in the hospital due to a fever. Your fever broke on it's own, and there was no infection, thankfully! You are back to your old self again and giving your sisters a hard time...lol. Your counts have fully recovered and you are ready to go back for your last treatment. We are hoping early next week, but it could be Wednesday depending when they can get you in. We have bloodwork again tomorrow to see where you are at. We need to figure the best time to stop the G-CSF because we don't want to stop too soon and have your counts fall. This is what happened last time. Your injection of G-CSF is getting tougher and tougher to administer. Your anxiety is so high and try to wiggle your way out of my restraint, which involves a lot of kicking and punching. I know I have said it before but I can't wait until we can stop the "pokes!"
Looking forward to a few more days at home with you...
Love you buddy,
Mom
Home
Weight: 14 Kg
WBC: 4.3
You made it home on Monday after 48 hours in the hospital due to a fever. Your fever broke on it's own, and there was no infection, thankfully! You are back to your old self again and giving your sisters a hard time...lol. Your counts have fully recovered and you are ready to go back for your last treatment. We are hoping early next week, but it could be Wednesday depending when they can get you in. We have bloodwork again tomorrow to see where you are at. We need to figure the best time to stop the G-CSF because we don't want to stop too soon and have your counts fall. This is what happened last time. Your injection of G-CSF is getting tougher and tougher to administer. Your anxiety is so high and try to wiggle your way out of my restraint, which involves a lot of kicking and punching. I know I have said it before but I can't wait until we can stop the "pokes!"
Looking forward to a few more days at home with you...
Love you buddy,
Mom
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