Thursday
Weight 14.12 kg
ACH Unit 1
Nurses; Kelcey, Sarah and Janey
I have to say my son it never gets easier to leave home and leave your mom and sisters behind,but we are getting close to the end. We have officially started your maintenance cycles as all your remission tests came back positive showing no signs of cancer in your body. Your maintenance protocol is still considered pretty aggressive treatment but should be easier on your body; it has to be aggressive to make sure it still kills any un-detectable cancer cells as they will still metabolize fast. Things have started off well except taking your predisone, which you continue to bring back up. I am trying to mask the taste in apple juice and other foods but it is not really helping. I am working with the Pharmacist to see what we can do to make this process a little easier.
This trip is also a bit easier for two more reasons. The first reason being you are excited to come back to "your" hospital. Our time spent in the Medicine Hat hospital was good, but I think we have grown used to our surroundings, nurses, families and routines in Alberta Children's Hospital. I know for myself I re-enforced how special a program it really is, in-particular being surrounded by other friends and families in the same situation. Its hard to describe, but everything changed when you were diagnosed and its something that really is unique to a family that is going through or gone through this devastating journey. In unit 1, you can still have down days but as we have said before you live through a lot of the other families around you. In Medicine Hat, we were isolated from this type of support and your mother and I struggled a bit to keep ourselves positive, it was just different.. As usual, you had a very warm welcoming from the nursing staff and after spending the day in clinic and a couple hours on the unit you had already initiated a full out water fight; this made you smile ear to ear.
The second reason its easier coming back is mom and sisters are soon to follow, they are coming on Saturday. Its been such a critical part of your treatment to be as normal as a family as we can be. To this point it has been your mom and I in Calgary with you in hospital and just us when we are out. Mom has been the yo-yo bouncing back and forth trying to keep our lives here and your sisters lives at home working. Now that its summer we are all going to stay up here together and get to do some things as a family, extending our time together. When we are together we see such huge lifts in your attitude and determiner and this comes out in your energy, mood and appetite. Chemo can take care of cancer cells but it takes family to make sure you believe and support your treatments mentally as well. The ladies should be around with us until we get to head back home in about 2 weeks.
Love,
Dad
Friday, July 26, 2013
Sunday, July 21, 2013
July 21, 2013
Sunday
MHRH / Home
Weight: 13.6?
Nurses: Reagean, Carmelita
Well not much has changed in the last couple of days, which is probably a good thing. You sleep at the hospital and you are given antibiotics at 4:00am, 12:00pm and then have day pass until 8:00 pm and return for another dose of the antibiotics.
You are sleeping well now that you are use to your surroundings. Your mornings are spent playing trucks and cars that a very special nurse buys you everyday. You have quite the collection now. We count down the time to noon so we can get home and see the family.
On Friday, you were able to go to Elkwater for a few hours while on day pass. You loved being outdoors with your friends and family. Most of our afternoons are spent hanging around home and enjoying the nice weather. Dad wraps your tubes up and you love watering the grass or having water fights with your sisters. We have to be careful you do not submerse your tubes and you are pretty careful, which helps. You are actually pretty protective over your tubes and are always watching your lines when hooked up. I find this amazing considering your age...it is like you just know!
You will finish your antibiotics tomorrow at noon. This means you will have one night at home before you go back to Calgary as your first cycle of maintenance starts on Wednesday. We will be trying to make the best of the last few days at home.
Here are some pictures of your stay at the Medicine Hat hospital.
Love you buddy,
Mom
This is the parent room, connected to your room. There is a bed that pulls down in the corner, a fireplace and a TV. So nice...
MHRH / Home
Weight: 13.6?
Nurses: Reagean, Carmelita
Well not much has changed in the last couple of days, which is probably a good thing. You sleep at the hospital and you are given antibiotics at 4:00am, 12:00pm and then have day pass until 8:00 pm and return for another dose of the antibiotics.
You are sleeping well now that you are use to your surroundings. Your mornings are spent playing trucks and cars that a very special nurse buys you everyday. You have quite the collection now. We count down the time to noon so we can get home and see the family.
On Friday, you were able to go to Elkwater for a few hours while on day pass. You loved being outdoors with your friends and family. Most of our afternoons are spent hanging around home and enjoying the nice weather. Dad wraps your tubes up and you love watering the grass or having water fights with your sisters. We have to be careful you do not submerse your tubes and you are pretty careful, which helps. You are actually pretty protective over your tubes and are always watching your lines when hooked up. I find this amazing considering your age...it is like you just know!
You will finish your antibiotics tomorrow at noon. This means you will have one night at home before you go back to Calgary as your first cycle of maintenance starts on Wednesday. We will be trying to make the best of the last few days at home.
Here are some pictures of your stay at the Medicine Hat hospital.
Love you buddy,
Mom
This is the parent room, connected to your room. There is a bed that pulls down in the corner, a fireplace and a TV. So nice...
Pic of your room.
Playing your cars.
Tuesday, July 16, 2013
July 16th, 2013
Tuesday
MHRH / Home
Weight: 13.6 kg
Nurse: Sheila
WBC: 0.1
So today we got news that you do have a bacterial infection. It is similiar to the infection you had in June and therefore will be treated with the same antibiotics. They were worried for a bit that it was the exact same infection, which could mean that there was an infection in your central line. Anyways, you will be on antibiotics for 10 days, every 8 hours, which means day passes again from 12 pm to 8 pm. We are upset that you are not home with us 24 hours a day but we will take 8 hours, especially since you will be able to stay in Medicine Hat.
You still do not have any neutrophils and your WBC has not come up yet so we need to keep you close to home. Hopefully your counts will rise in the next couple of days. Your red blood count as well as platelets have dropped, but only slightly.
We are going to take advantage of the hours you are at home to spend as a family and just enjoy each other. I know everyday you can't wait to see your sisters and ask and ask until they come up to the floor. Now, you will be able to go home with them every afternoon. This afternoon you are crafting with Abbi and make a Batman poster to go on your door at the hospital. A very special nurse brought it by for you and you were very excited!
Love you more than you know,
Mom
MHRH / Home
Weight: 13.6 kg
Nurse: Sheila
WBC: 0.1
So today we got news that you do have a bacterial infection. It is similiar to the infection you had in June and therefore will be treated with the same antibiotics. They were worried for a bit that it was the exact same infection, which could mean that there was an infection in your central line. Anyways, you will be on antibiotics for 10 days, every 8 hours, which means day passes again from 12 pm to 8 pm. We are upset that you are not home with us 24 hours a day but we will take 8 hours, especially since you will be able to stay in Medicine Hat.
You still do not have any neutrophils and your WBC has not come up yet so we need to keep you close to home. Hopefully your counts will rise in the next couple of days. Your red blood count as well as platelets have dropped, but only slightly.
We are going to take advantage of the hours you are at home to spend as a family and just enjoy each other. I know everyday you can't wait to see your sisters and ask and ask until they come up to the floor. Now, you will be able to go home with them every afternoon. This afternoon you are crafting with Abbi and make a Batman poster to go on your door at the hospital. A very special nurse brought it by for you and you were very excited!
Love you more than you know,
Mom
Sunday, July 14, 2013
July14th, 2013
Sunday
MHRH
Weight: 13.6 kg
Nurses: Kelsey / Laura
ANC: 80
Well, we had a bit of a set back yesterday. You started to present with a fever around 1 pm. We monitored it for an hour and the fever actually started to get higher so we knew that we needed to take you to the hospital. After some coordinating between the Oncologist in Calgary and the Pediatrician in Medicine Hat, you were admitted to Pediatrics at MHRH (Medicine Hat Regional Hospital) around 4 pm.
The nurses took your vitals right away and your heart rate was high, your fever was high and your blood pressure was dropping. They took blood right away to get a CBC and to take cultures. When your CBC came back it showed that your red blood cells were 69 (they were 79 just a day before), your platelets were 8 (they were 29 just a day before) and you had no ANC, which was consistent from the day before. Orders were given for both transfussions as well as antibiotics. While waiting for the blood you continued to show signs of distress. Your body started to shake and you were unable to stop it. I have to admit I knew why your body was reacting this way, but it was still scary to watch. The Pediatrician was worried too and made sure transport was on call in case you needed to be airlifted to Calgary. You did finally receieve your blood, antibiotics and also a dose of Tylenol and within the hour you were back to your old self again. Everyone could take a breath knowing your vitals were back to normal. You had a restful night, which was also good news.
Today the girls and I arrived to the hospital in the morning to see you in a great mood. You continue to recieve two types of broad spectrum antibiotics as we do not know what type of bacterial infection you have. We do not have results back from the cultures taken yesterday as we have to wait 48 hours. However, an early screening showed that they were positive so we will have to wait until tomorrow to know what the bacteria is. This is not great news as you will now need to stay in hospital until the bacterial infection is gone. We hope to know more tomorrow like what type and then what type of antibiotic is needed and if you can take orally, etc.
You had visitors today, which helped pass the time. The girls and dad came back and brought supper. You have not had much to eat and the hospital food is not your favorite. You told dad you wanted chocolate chip pancakes, so he made them for you, but ended up never eating them. I am hoping that your appetite will return soon as you need all the strength you can right now to fight this infection.
I am hoping for more answers tomorrow. I do pray that this is only short term and you can come back home soon. We miss you so much already.
Love you to the moon and back,
Mom
Here is a pic of you and Corbin. Corbin had to wear a gown as you are on isolation. He actually looks like the patient in this pic!
MHRH
Weight: 13.6 kg
Nurses: Kelsey / Laura
ANC: 80
Well, we had a bit of a set back yesterday. You started to present with a fever around 1 pm. We monitored it for an hour and the fever actually started to get higher so we knew that we needed to take you to the hospital. After some coordinating between the Oncologist in Calgary and the Pediatrician in Medicine Hat, you were admitted to Pediatrics at MHRH (Medicine Hat Regional Hospital) around 4 pm.
The nurses took your vitals right away and your heart rate was high, your fever was high and your blood pressure was dropping. They took blood right away to get a CBC and to take cultures. When your CBC came back it showed that your red blood cells were 69 (they were 79 just a day before), your platelets were 8 (they were 29 just a day before) and you had no ANC, which was consistent from the day before. Orders were given for both transfussions as well as antibiotics. While waiting for the blood you continued to show signs of distress. Your body started to shake and you were unable to stop it. I have to admit I knew why your body was reacting this way, but it was still scary to watch. The Pediatrician was worried too and made sure transport was on call in case you needed to be airlifted to Calgary. You did finally receieve your blood, antibiotics and also a dose of Tylenol and within the hour you were back to your old self again. Everyone could take a breath knowing your vitals were back to normal. You had a restful night, which was also good news.
Today the girls and I arrived to the hospital in the morning to see you in a great mood. You continue to recieve two types of broad spectrum antibiotics as we do not know what type of bacterial infection you have. We do not have results back from the cultures taken yesterday as we have to wait 48 hours. However, an early screening showed that they were positive so we will have to wait until tomorrow to know what the bacteria is. This is not great news as you will now need to stay in hospital until the bacterial infection is gone. We hope to know more tomorrow like what type and then what type of antibiotic is needed and if you can take orally, etc.
You had visitors today, which helped pass the time. The girls and dad came back and brought supper. You have not had much to eat and the hospital food is not your favorite. You told dad you wanted chocolate chip pancakes, so he made them for you, but ended up never eating them. I am hoping that your appetite will return soon as you need all the strength you can right now to fight this infection.
I am hoping for more answers tomorrow. I do pray that this is only short term and you can come back home soon. We miss you so much already.
Love you to the moon and back,
Mom
Here is a pic of you and Corbin. Corbin had to wear a gown as you are on isolation. He actually looks like the patient in this pic!
Thursday, July 11, 2013
July 11th, 2013
Thursday
Home
Weight: 14 kg?
Well we are home and loving it! It is so good to have you home. You have been home for a few days now and we have had no issues. This is the first time we have had you home right after you were done your chemo meds. Since you had no side effects with these meds last time we thought we would take you home instead of hanging out at RMH. You will need to have blood work done here, at the Medicine Hat Hospital. Your first CBC is tomorrow morning and then we can determine if and when you will need a transfusion. Last time on this cycle your required 3 transfusions so I am thinking you will need to have at least one done this time. We also have to be watch your counts to see when your WBC rebounds. We have to be very careful and keep you in somewhat of a bubble until we see your counts rise again. Every morning we need to give you a shot of GCSF to help increase your counts. You are still pretty anxious and get upset knowing a "poke" is coming. I don't know when it will get any easier but it is worth it because you are able to be home. Well this is just a quick update to say all is good and we have made it home.
Love you more than you know,
Mom
Home
Weight: 14 kg?
Well we are home and loving it! It is so good to have you home. You have been home for a few days now and we have had no issues. This is the first time we have had you home right after you were done your chemo meds. Since you had no side effects with these meds last time we thought we would take you home instead of hanging out at RMH. You will need to have blood work done here, at the Medicine Hat Hospital. Your first CBC is tomorrow morning and then we can determine if and when you will need a transfusion. Last time on this cycle your required 3 transfusions so I am thinking you will need to have at least one done this time. We also have to be watch your counts to see when your WBC rebounds. We have to be very careful and keep you in somewhat of a bubble until we see your counts rise again. Every morning we need to give you a shot of GCSF to help increase your counts. You are still pretty anxious and get upset knowing a "poke" is coming. I don't know when it will get any easier but it is worth it because you are able to be home. Well this is just a quick update to say all is good and we have made it home.
Love you more than you know,
Mom
Sunday, July 7, 2013
July 6th, 2013
Saturday
Unit 1
Weight: 14.05 kg
Nurses: Kevin / Lauren
So, we spoke too soon...you are still getting sick when getting your high-dose chemo. It is becoming less and less, but it is usually 2 to 3 times a day. You are taking Ondansetron and Ativan to help with your nausea and it does seem to help.
The good news is that we are able to go home tomorrow!!! Since you did not have any side effects on this cycle last time they feel confident letting us go back to Medicine Hat, instead of staying at RMH. This does mean that we will have to be very careful at home and keep you a "bubble" since your counts will drop to 0 or close to it. You will do blood transfusions and check ups in Medicine Hat. If all goes well, you will be home close to 20 days. I can't wait and I just pray nothing changes.
This comes as a huge relief to me as well as 6 days of next to no sleep kills us both, its going to be extra sweet to sleep in our own beds and rest back up. On top of that there is no place like home for your recovery, normal routine helps 10 fold to increase your strength and your weight etc. At this point in your treatment the time we spend at home is almost as important as the time we spend in hospital. As well the girls are now on summer holidays so we get to catch up on family time, something we all appreciate a little bit more now.
Love you buddy,
Mom and Dad
Here are some pics from the week. You spent time crafting with medical supplies and having water fights with the nurses.
Unit 1
Weight: 14.05 kg
Nurses: Kevin / Lauren
So, we spoke too soon...you are still getting sick when getting your high-dose chemo. It is becoming less and less, but it is usually 2 to 3 times a day. You are taking Ondansetron and Ativan to help with your nausea and it does seem to help.
The good news is that we are able to go home tomorrow!!! Since you did not have any side effects on this cycle last time they feel confident letting us go back to Medicine Hat, instead of staying at RMH. This does mean that we will have to be very careful at home and keep you a "bubble" since your counts will drop to 0 or close to it. You will do blood transfusions and check ups in Medicine Hat. If all goes well, you will be home close to 20 days. I can't wait and I just pray nothing changes.
This comes as a huge relief to me as well as 6 days of next to no sleep kills us both, its going to be extra sweet to sleep in our own beds and rest back up. On top of that there is no place like home for your recovery, normal routine helps 10 fold to increase your strength and your weight etc. At this point in your treatment the time we spend at home is almost as important as the time we spend in hospital. As well the girls are now on summer holidays so we get to catch up on family time, something we all appreciate a little bit more now.
Love you buddy,
Mom and Dad
Here are some pics from the week. You spent time crafting with medical supplies and having water fights with the nurses.
Thursday, July 4, 2013
July 4th, 2013
Thursday
Unit 1
Weight: 14.2 kg
Nurses: Megan (10) / Cathy
Yesterday was not a good day for you. Something was causing your stomach to be upset and you ended up getting sick multiple times. This is the first time throughout your whole protocol that you have been sick. You are not getting new chemo drugs, in fact you are getting the same chemo drugs and doses as the last treatment. They have given you some anti-nausea drugs as well as gravol to try to settle your stomach. You and dad did not have a very good sleep in between getting sick, putting in eye drops and one hour beeps on your pump due to chemo meds throughout the night.
This morning I was expecting a tired, sick little boy, however I found you sitting up eating breakfast and excited for the parade to start. Your dad was amazed and annoyed (lol) at how quickly you turned around. Literally half and hour earlier you wouldn't even wake up when the doctor was in the room and now you are walking all around your room. Anyways, since you were receiving chemo this morning, you weren't able to go outside to see the parade. The charge nurse did manage to find a room available with a great view of the parade route so we moved there for the parade. You were through the roof excited for the parade and loved your new cowboy hat from the hospital. You continued to tell me what things were before I could even see them. Your hand was always waving through the window. The horses and the helicopter (flying up above) were your favorites. It is truly amazing to think that there is a special stampede parade just for ACH. Seeing all the children's faces light up when the parade start is something I will never forget.
Your day today continued on a good note. You have not gotten sick anymore (knock on wood) and you managed to have a good nap this afternoon. I can tell that you don't have the energy that we are use to, I think yesterday definitely took a lot out of you. We decided to take you off the gravol to see if you are able to keep everything down. I hope the worst of it is over...fingers crossed.
Here are some pictures from the parade!
Love you to the moon and back,
Mom
Unit 1
Weight: 14.2 kg
Nurses: Megan (10) / Cathy
Yesterday was not a good day for you. Something was causing your stomach to be upset and you ended up getting sick multiple times. This is the first time throughout your whole protocol that you have been sick. You are not getting new chemo drugs, in fact you are getting the same chemo drugs and doses as the last treatment. They have given you some anti-nausea drugs as well as gravol to try to settle your stomach. You and dad did not have a very good sleep in between getting sick, putting in eye drops and one hour beeps on your pump due to chemo meds throughout the night.
This morning I was expecting a tired, sick little boy, however I found you sitting up eating breakfast and excited for the parade to start. Your dad was amazed and annoyed (lol) at how quickly you turned around. Literally half and hour earlier you wouldn't even wake up when the doctor was in the room and now you are walking all around your room. Anyways, since you were receiving chemo this morning, you weren't able to go outside to see the parade. The charge nurse did manage to find a room available with a great view of the parade route so we moved there for the parade. You were through the roof excited for the parade and loved your new cowboy hat from the hospital. You continued to tell me what things were before I could even see them. Your hand was always waving through the window. The horses and the helicopter (flying up above) were your favorites. It is truly amazing to think that there is a special stampede parade just for ACH. Seeing all the children's faces light up when the parade start is something I will never forget.
Your day today continued on a good note. You have not gotten sick anymore (knock on wood) and you managed to have a good nap this afternoon. I can tell that you don't have the energy that we are use to, I think yesterday definitely took a lot out of you. We decided to take you off the gravol to see if you are able to keep everything down. I hope the worst of it is over...fingers crossed.
Here are some pictures from the parade!
Love you to the moon and back,
Mom
Wednesday, July 3, 2013
July 1st, 2013
Monday
Home / Unit 1
Weight: 14.4 kg
Nurse: Micaela
Happy Canada Day!
Well it has been exactly 3 months since your official diagnosis. It has been a life changing couple of months and definitely not the easiest. You started out so weak and unable to eat to now a 2 year old that is full of energy and loving life. It is hard to see you with your limitations, but you do make the best out of every situation and do not let illness get in the way. You teach me everyday to live it to the fullest and appreciate the simple things in life. I know that we have a long journey still ahead of us, but it makes me feel better knowing you are healthier and stronger going into each treatment.
You left today to go back to the ACH. This time you weren't too upset, but I think it is because we had been talking to you about it quite a bit. There were tears and some upset kids when you left but we all know that you will be back soon. These good-byes seem to get harder for me but easier on you.
The time that we spent with you at home was amazing. We had the opportunity to hang out with family and great friends. I loved seeing you interact with your sisters, cousins and friends...it was like you had never left. The weather was beautiful and we took advantage of being outside riding bikes, going for walks and trying to stay cool. With your broviac tubes you are not able to go into a swimming pool, get really wet or even attempt the beach. Your sisters were very understanding and we did not fill the pool up too much and they kept a close eye on you. We also stayed away from the beach when we had a short visit to Elkwater; this was not easy but everyone was understanding.
While you were home, we had the chance to visit some people that have helped us along the way. It was nice for everyone to see how healthy you are. I have no words to express how thankful we are to everyone who has reached out to support us in one way or another. We would not be here without your backing.
Tomorrow you will start the second cycle of Consolidation. Your first cycle did not show any side effects so I am hoping this is the case again. You will get a LP (lumbar puncture) to start of your treatment and will need to be sedated for this. I hate that you need to be sedated for all these procedures but I have to remember that they are becoming less and less. In fact, this should be your second last LP in your protocol. I am coming up on Wednesday to help dad. Your chemo is through the night and night, which means you and dad will be up every hour and need to do eye drops every 4 hours. It will last 5-6 days and then you will be done!
We miss you like crazy already. The girls and I cannot wait for you to come and home!
Love you buddy,
Mom
Home / Unit 1
Weight: 14.4 kg
Nurse: Micaela
Happy Canada Day!
Well it has been exactly 3 months since your official diagnosis. It has been a life changing couple of months and definitely not the easiest. You started out so weak and unable to eat to now a 2 year old that is full of energy and loving life. It is hard to see you with your limitations, but you do make the best out of every situation and do not let illness get in the way. You teach me everyday to live it to the fullest and appreciate the simple things in life. I know that we have a long journey still ahead of us, but it makes me feel better knowing you are healthier and stronger going into each treatment.
You left today to go back to the ACH. This time you weren't too upset, but I think it is because we had been talking to you about it quite a bit. There were tears and some upset kids when you left but we all know that you will be back soon. These good-byes seem to get harder for me but easier on you.
The time that we spent with you at home was amazing. We had the opportunity to hang out with family and great friends. I loved seeing you interact with your sisters, cousins and friends...it was like you had never left. The weather was beautiful and we took advantage of being outside riding bikes, going for walks and trying to stay cool. With your broviac tubes you are not able to go into a swimming pool, get really wet or even attempt the beach. Your sisters were very understanding and we did not fill the pool up too much and they kept a close eye on you. We also stayed away from the beach when we had a short visit to Elkwater; this was not easy but everyone was understanding.
While you were home, we had the chance to visit some people that have helped us along the way. It was nice for everyone to see how healthy you are. I have no words to express how thankful we are to everyone who has reached out to support us in one way or another. We would not be here without your backing.
Tomorrow you will start the second cycle of Consolidation. Your first cycle did not show any side effects so I am hoping this is the case again. You will get a LP (lumbar puncture) to start of your treatment and will need to be sedated for this. I hate that you need to be sedated for all these procedures but I have to remember that they are becoming less and less. In fact, this should be your second last LP in your protocol. I am coming up on Wednesday to help dad. Your chemo is through the night and night, which means you and dad will be up every hour and need to do eye drops every 4 hours. It will last 5-6 days and then you will be done!
We miss you like crazy already. The girls and I cannot wait for you to come and home!
Love you buddy,
Mom
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