Monday
Unit 1
Weight:
Nurses: Kelly/Becky
And the numbers are on their way up!!
I know that your dad is busy with you in Calgary so I wanted to do a quick post to update your "new" attitude!
Tonight, I got a call from you! I answered the phone, thinking it was your dad, and you said "hello." You talked to me and told me about the new bear you got today, which you call Doc because he has a doctor suit on. I was in tears hearing you in such a good mood. I have missed this Kallum. The funny loving little boy who loves to make others happy. The conversation ended with a kiss, which I have also missed. I will finally go to sleep feeling happy that prayers of healing have been answered and we can be with our Kallum for a short time before your next treatment starts.
Obviously, your neutrophil and WBC numbers are increasing. We are hoping you can be weaned of your pain meds soon so you can get a day pass or even released from the hospital soon. You can start your next round of chemo as soon as Thursday. This round will be just as difficult as the last round so we aren't looking forward to that. We will just take these "good" days before we are back to the "bad" ones.
Dad might have more information tomorrow. I just wanted to have a good news post because it has definitely been awhile. I can't wait to see you on Wednesday and get a chance to be with my happy, loving Kallum.
Love you buddy,
Mom
Monday, April 29, 2013
Sunday, April 28, 2013
April 27th, 2013
Saturday
Unit 1
Weight: 13.1 kg
Nurses: Katie/Miriam
WBC: 0.9
Not a lot to update today, last night went the best it has in a long time. You fell asleep about 8:30 last night and we did not hear a peep from you till 2:30 in the morning. Upping the regular flow of pain meds allowed you to rest and we did not have to use bolus to keep you comfortable, so we both slept steady. We had a diaper change at 2:30 am and that really seems to agitate your back pain again. The pain bothers you for the next 2 hours on an off and when you cough. Over all though you got 10 hours of continual sleep and 2 hours of broken sleep, that's pretty good around here.
When the doctor came this morning, we talked about the back pain and he agreed it was worth an X-ray to find out if there was a compressed disc or something else, as everything else had cleared. We did the X-ray and it showed your back was fine, so the good news is we suspect the pain is just coming from being in bed for 28 days. We spend lots of time today to try and keep moving you into new positions in bed, sitting on my lap etc. We also talked to the pain team and they were happy to see that we had only used 5 boluses in the last 24 hours. We considered taking down your meds, but thought we should wait out just one more day.
Grandma came up to see you today, its nice for your mom and I to have someone else to talk to. For most of the day, like many times before, you ignore your special visitor, but warm up and make a scene when its time for her and mom to leave for supper.
Love you buddy,
Dad
Unit 1
Weight: 13.1 kg
Nurses: Katie/Miriam
WBC: 0.9
Not a lot to update today, last night went the best it has in a long time. You fell asleep about 8:30 last night and we did not hear a peep from you till 2:30 in the morning. Upping the regular flow of pain meds allowed you to rest and we did not have to use bolus to keep you comfortable, so we both slept steady. We had a diaper change at 2:30 am and that really seems to agitate your back pain again. The pain bothers you for the next 2 hours on an off and when you cough. Over all though you got 10 hours of continual sleep and 2 hours of broken sleep, that's pretty good around here.
When the doctor came this morning, we talked about the back pain and he agreed it was worth an X-ray to find out if there was a compressed disc or something else, as everything else had cleared. We did the X-ray and it showed your back was fine, so the good news is we suspect the pain is just coming from being in bed for 28 days. We spend lots of time today to try and keep moving you into new positions in bed, sitting on my lap etc. We also talked to the pain team and they were happy to see that we had only used 5 boluses in the last 24 hours. We considered taking down your meds, but thought we should wait out just one more day.
Grandma came up to see you today, its nice for your mom and I to have someone else to talk to. For most of the day, like many times before, you ignore your special visitor, but warm up and make a scene when its time for her and mom to leave for supper.
Love you buddy,
Dad
Friday, April 26, 2013
April 26th, 2013
Friday
Unit 1
Weight: 13.0 kg
Nurses: Katie/Miriam
WBC: 0.5
The last couple of days have been more of the same. The doctors as well as dad and I are trying to figure out what is giving you so much pain. The pain has been causing some very restless and sleepless nights. We are pretty sure the pain is from the mouth sores, the doctor say that older kids that have this stage of sores, say they it is very, very painful. Also, you complain that your back and bum hurt. That could be because of sitting so long (we do change your position in bed often) or maybe you have a compressed disc or it could be your bowls, as they have not been working well either. The APT does not want to give full does of the pain meds so we have to press an extra bouls when we see that you are in more pain. Well, this means that dad is pushing this button at least once an hour through the night. The APT has decided to increase your basal rate at night so hopefully you and dad can get a good night sleep. At this point, we are just hoping that your WBC will start to increase so your body will start healing. The doctors are very optimistic that we could see some positive results as soon as this weekend because once your WBC start to increase they increase quickly.
Your sodium level is low too therefore they had to decrease your feeds through your feeding tube. You really need something in your body and I hope that your sodium increases so you can have more feeds since you are not eating anything through your mouth.
Today you ditched the old man look! You hair was actually starting to look patchy. Your dad and I shaved the thicker patches off the back of your head. We took pics so you could see your new look. We didn't get all the hair, but at least it looks a little blended.
I just want you to know that I did go see my surgeon in regards to my back. I do have a lot of pain still, but he said that is to be expected and that I still need to keep it easy, as much as I can. The good news is that my disc replacements are where they are suppose to be and they have embedded into the bone. I start physio here in Calgary, at the spine centre, today. I am hoping that the physio will make me stronger, help with the pain and I can start to decrease more of my meds.
The girls are still not coming to visit this weekend because Gracie has a cold. We are really hoping that they can come next weekend. It has been tough not having our family together, even if it is in a hospital room.
You should start your next chemo treatment a week from today. We still are hoping that you will be well enough to spend at least one night at RMH before we start all this again. They say the first and second treatments are the hardest. I am not sure how we will get through this but we have our army behind us fighting for us everyday.
Love you to the moon and back,
Mom
Unit 1
Weight: 13.0 kg
Nurses: Katie/Miriam
WBC: 0.5
The last couple of days have been more of the same. The doctors as well as dad and I are trying to figure out what is giving you so much pain. The pain has been causing some very restless and sleepless nights. We are pretty sure the pain is from the mouth sores, the doctor say that older kids that have this stage of sores, say they it is very, very painful. Also, you complain that your back and bum hurt. That could be because of sitting so long (we do change your position in bed often) or maybe you have a compressed disc or it could be your bowls, as they have not been working well either. The APT does not want to give full does of the pain meds so we have to press an extra bouls when we see that you are in more pain. Well, this means that dad is pushing this button at least once an hour through the night. The APT has decided to increase your basal rate at night so hopefully you and dad can get a good night sleep. At this point, we are just hoping that your WBC will start to increase so your body will start healing. The doctors are very optimistic that we could see some positive results as soon as this weekend because once your WBC start to increase they increase quickly.
Your sodium level is low too therefore they had to decrease your feeds through your feeding tube. You really need something in your body and I hope that your sodium increases so you can have more feeds since you are not eating anything through your mouth.
Today you ditched the old man look! You hair was actually starting to look patchy. Your dad and I shaved the thicker patches off the back of your head. We took pics so you could see your new look. We didn't get all the hair, but at least it looks a little blended.
I just want you to know that I did go see my surgeon in regards to my back. I do have a lot of pain still, but he said that is to be expected and that I still need to keep it easy, as much as I can. The good news is that my disc replacements are where they are suppose to be and they have embedded into the bone. I start physio here in Calgary, at the spine centre, today. I am hoping that the physio will make me stronger, help with the pain and I can start to decrease more of my meds.
The girls are still not coming to visit this weekend because Gracie has a cold. We are really hoping that they can come next weekend. It has been tough not having our family together, even if it is in a hospital room.
You should start your next chemo treatment a week from today. We still are hoping that you will be well enough to spend at least one night at RMH before we start all this again. They say the first and second treatments are the hardest. I am not sure how we will get through this but we have our army behind us fighting for us everyday.
Love you to the moon and back,
Mom
Wednesday, April 24, 2013
April 24th, 2013
Wednesday
Unit 1
Weight: 14.5 kg
Nurses: Becky/Renee
Again I am taken back when I arrive to see you and your dad. This time you have lost the top portion of hair on your head. It is very hard to look at. It is a visible sign that this is cancer and it has taken over your little body. It is not fair...
Your hair is thinning all over, but you have a definite bald spot at the front of your head. After getting over the initial shock of your new image, it does kinda look like an old man's hair style. I am going to post pictures. At first this seems wrong but this blog is ultimately for you and I think you would like to see the different stages you go through.
On a good note, your swelling has come down a lot today. If you have followed your weight stat you will notice a decrease of approx. 1.5 kg. Good news also came last night, your White Blood Count is 0.1, that should mean that your mouth will start to heal and can get back to normal. Also, as we drained off lots of fluid last night, close to a liter, your electrolytes held so all around you are more stable.
Last night was another night with little to no sleep for us both. We had switched you from morphine to hydro-morph at 3:00 pm yesterday and your level of discomfort seemed to grow into the night. You looked like you were sleeping at times but continued to grow in pain. At one point, the doctor came into look at you and said your back probably hurt from the way you were sitting, so Becky and I worked to sit you up better and gave you a hot pack. At midnight we gave up, called APS (Acute Pain Service) and tripled your drugs to try and get you to settle down, heart rate was in the 180's by now. Today, the APS team was back to see how your pain is doing, they found you sleeping and thought things must be ok and would be back in the afternoon. However, when you awake your agitation just seems to grow and we can't get you to settle, APS comes back and we change up one more time. You stay on the same drugs, but back with constant basal of drugs and they add a bolus button to help get you through the bad times. On a side note: you are increasing your dose of Hydro-morph and mom is trying to decrease her dose of Hydro-morph. I hope we have a balance soon for your pain management as too much pain meds makes you drowsy and not enough is just not good.
Also new is you are on isolation as you have a runny nose and have developed a cough; they think you may have a cold. Nurses now to get wear masks and gowns when they come in to your room. This helps protect the other patients on Unit 1. You had a sample sucked out of your nose to determine what exactly you have going on. It is hard to determine if you actually have a cold as you continue to battle mucisits.
Tomorrow is another day. I hope your WPC increases as this will help speed up the healing phase.
Love you buddy,
Mom and Dad
Unit 1
Weight: 14.5 kg
Nurses: Becky/Renee
Again I am taken back when I arrive to see you and your dad. This time you have lost the top portion of hair on your head. It is very hard to look at. It is a visible sign that this is cancer and it has taken over your little body. It is not fair...
Your hair is thinning all over, but you have a definite bald spot at the front of your head. After getting over the initial shock of your new image, it does kinda look like an old man's hair style. I am going to post pictures. At first this seems wrong but this blog is ultimately for you and I think you would like to see the different stages you go through.
On a good note, your swelling has come down a lot today. If you have followed your weight stat you will notice a decrease of approx. 1.5 kg. Good news also came last night, your White Blood Count is 0.1, that should mean that your mouth will start to heal and can get back to normal. Also, as we drained off lots of fluid last night, close to a liter, your electrolytes held so all around you are more stable.
Last night was another night with little to no sleep for us both. We had switched you from morphine to hydro-morph at 3:00 pm yesterday and your level of discomfort seemed to grow into the night. You looked like you were sleeping at times but continued to grow in pain. At one point, the doctor came into look at you and said your back probably hurt from the way you were sitting, so Becky and I worked to sit you up better and gave you a hot pack. At midnight we gave up, called APS (Acute Pain Service) and tripled your drugs to try and get you to settle down, heart rate was in the 180's by now. Today, the APS team was back to see how your pain is doing, they found you sleeping and thought things must be ok and would be back in the afternoon. However, when you awake your agitation just seems to grow and we can't get you to settle, APS comes back and we change up one more time. You stay on the same drugs, but back with constant basal of drugs and they add a bolus button to help get you through the bad times. On a side note: you are increasing your dose of Hydro-morph and mom is trying to decrease her dose of Hydro-morph. I hope we have a balance soon for your pain management as too much pain meds makes you drowsy and not enough is just not good.
Also new is you are on isolation as you have a runny nose and have developed a cough; they think you may have a cold. Nurses now to get wear masks and gowns when they come in to your room. This helps protect the other patients on Unit 1. You had a sample sucked out of your nose to determine what exactly you have going on. It is hard to determine if you actually have a cold as you continue to battle mucisits.
Tomorrow is another day. I hope your WPC increases as this will help speed up the healing phase.
Love you buddy,
Mom and Dad
Tuesday, April 23, 2013
April 22nd and 23rd
Monday and Tuesday
Unit 1
Weight: 16. Kg
Nurse: Beki/Becky/Renee
Quick Update for day 28/29 in Hospital
Your dad has had his hands full this week with you so I thought I would do a quick update from home. This information is from dad and I hope I have understood it correctly.
The main concern right now is your fluids. You actually gained approx. 7 pounds since we last weighed you Thursday, most of it came on Saturday and Sunday. You are so swollen that you had to go up a size in diapers because they cut into you so bad. Your dad said it is very hard to see you looking like this and you are also in a lot of pain because of it, you are just uncomfortable and angry when you are awake. They have some meds that centralize your fluid and then try to flush the unnecessary fluid out. You have had these meds a few times, but they don't seem to react like you did before. The other side to this treatment is trying to manage all the electrolytes in your body. Your blood work keeps coming back low on potassium magnesium, that effects your heart's operation as well as low levels of phosphates and platelets. So we are running non-stop electrolyte bolus's as well as good size flow of saline with potassium in it. So when they give you the Albumin (collects fluid) and Lasix (gets rid of fluid) it lowers these electrolytes.
Its a tough balance that it also effects your pain management. The morphine causes the digestive system to slow down as well as making you very drowsy so you can't tell us where you hurt. It is very frustrating for you, the medical staff and your dad. The Pain Control Team (PTC) has tried a few things to help with this, on the 22nd we halved your morphine by putting you on a small amount of Ketamine. By the end of the 22nd day you were more alert and could work with us to localize the pain. As we said above, your reaction to the Lasix is still a little slow, so you are no longer taking morphine and switching to hydro-morph.
Your breathing is still doing pretty good and you have not gone back to nose prongs because you are stable enough on blow by. You help to clear your throat by coughing and bringing the mucus to the front for suction, this makes everyone feel much better. We are pretty sure we won't get a break from the hospital before your next round of chemo starts, but we are learning a lot about how your body reacts to the drugs to be ready for round 3. You are one tough little man, its amazing what you can endure.
I can't wait to see you tomorrow. I have an appointment tomorrow with my surgeon, regarding my back, and I hope it goes well. After my appointment, I can come up and give your dad a much needed hand. Even though I can't lift or anything I can be there for support. Note how long your Beaded Journey is getting in the picture below.
Love you buddy,
Mom and Dad
Unit 1
Weight: 16. Kg
Nurse: Beki/Becky/Renee
Quick Update for day 28/29 in Hospital
Your dad has had his hands full this week with you so I thought I would do a quick update from home. This information is from dad and I hope I have understood it correctly.
The main concern right now is your fluids. You actually gained approx. 7 pounds since we last weighed you Thursday, most of it came on Saturday and Sunday. You are so swollen that you had to go up a size in diapers because they cut into you so bad. Your dad said it is very hard to see you looking like this and you are also in a lot of pain because of it, you are just uncomfortable and angry when you are awake. They have some meds that centralize your fluid and then try to flush the unnecessary fluid out. You have had these meds a few times, but they don't seem to react like you did before. The other side to this treatment is trying to manage all the electrolytes in your body. Your blood work keeps coming back low on potassium magnesium, that effects your heart's operation as well as low levels of phosphates and platelets. So we are running non-stop electrolyte bolus's as well as good size flow of saline with potassium in it. So when they give you the Albumin (collects fluid) and Lasix (gets rid of fluid) it lowers these electrolytes.
Its a tough balance that it also effects your pain management. The morphine causes the digestive system to slow down as well as making you very drowsy so you can't tell us where you hurt. It is very frustrating for you, the medical staff and your dad. The Pain Control Team (PTC) has tried a few things to help with this, on the 22nd we halved your morphine by putting you on a small amount of Ketamine. By the end of the 22nd day you were more alert and could work with us to localize the pain. As we said above, your reaction to the Lasix is still a little slow, so you are no longer taking morphine and switching to hydro-morph.
Your breathing is still doing pretty good and you have not gone back to nose prongs because you are stable enough on blow by. You help to clear your throat by coughing and bringing the mucus to the front for suction, this makes everyone feel much better. We are pretty sure we won't get a break from the hospital before your next round of chemo starts, but we are learning a lot about how your body reacts to the drugs to be ready for round 3. You are one tough little man, its amazing what you can endure.
I can't wait to see you tomorrow. I have an appointment tomorrow with my surgeon, regarding my back, and I hope it goes well. After my appointment, I can come up and give your dad a much needed hand. Even though I can't lift or anything I can be there for support. Note how long your Beaded Journey is getting in the picture below.
Love you buddy,
Mom and Dad
Monday, April 22, 2013
April 21st, 2013
Sunday
Unit 1
Weight 14.9 Kg (gain due to increase fluid)
Nurses Nicole/Beki
Welcome home!
Late yesterday afternoon (Saturday), in PICU, the doctors thought you were stable enough to send us back to Oncology, Unit 1. After giving you one more bolis of fluid to make sure circulation was ok we could be moved back to Unit 1. The "quick" bolis actually took us till 6:00 pm to get the conformation the docs were happy with. The resident came back and explained that things were just a little nuts, but to rest assure we would get over soon and then again delayed while the nurses did a shift change. Mom and Auntie Tannis had gone out for supper and get you fish sticks (another request from you) and Uncle Dustin stayed to help me get you moved. Side note: Uncle Dusty and Auntie Tannis came Saturday to help out and are staying until Sunday.
At 8:00 pm, Dee the ICU nurse, helped us get you back to Unit 1 and its great to be "home." The nurses there were all excited to see you too. We were settled right away, the nurses said the nights priority was to get you to sleep. They had the evening doc ready to do a quick evaluation, the nurses did vitals and then we all worked to settle you in to go to sleep. Everything seemed to be going back to routine except for one big change for me, you wanted nothing to do with me, its was all about Uncle Dustin, how quick you lost trust haha. You had to sit in the chair with Uncle, you had to have him vacuum out your mouth, he had to pick out your snack and then hold your hand while you went to sleep. After you settle, Uncle went to join Auntie and Mom at RMH to get some sleep.
The night is like heaven back in Unit 1, we both get a much needed sleep with very little disruption. I wake up well rested and ready for a new day, you, however, wake still needing more sleep and I'm sure the pain is still wearing on you and the steroids making you hungry don't help. Uncle Dustin is by early to see you and you gravitate to him right away again. Not long after you mom and Auntie arrive and I take off to RMH for my shower, a little extra rest and some groceries, as your mom is headed home today.
You spend the morning sleeping on Auntie in the chair, but are still pretty irritated. At noon, I came back to the room and your mood quickly changed.....for the worse haha. You seem quite content with your mom and Aunt and I'm starting to think one of them may have to stay and I can go back to the Hat. Mom and Auntie leave and you and I get back to routine. You ask for every snack in the place and want none other than chocolate milk. They say anything you eat with the mouth sores you will never eat again in life, so much for chocolate milk and ice cream sandwiches. After a quick snack, you settle in for a nap, the nurses keep weaning you off oxygen so we can take the nose prongs out and by 4:00 pm you are just on blow bye (hose blowing oxygen towards you face). This allows you to sleep even better, you start to snore and reduce the sleep deficit.
Even though you are sleeping we can still see the mucisitis is bad. Your throat is swollen and so sore you didn't eat much today. You are also getting puffy again in your hands, feet, face and pelvis. They give you some medicine to try and pull all the fluids together so that your body can get rid of them. The meds seems slow acting but we don't want more to help it just yet, we will wait till the morning to give another dose. As usual, we are trying to fight so many side effects at once its hard to tell if we are getting anywhere making you comfortable. But tomorrow is another day, another challenge and I'm sure somewhere there will be another small victory.
You are my hero as always,
Dad
Here is a picture of you finally resting peacefully with Auntie Tannis.
Unit 1
Weight 14.9 Kg (gain due to increase fluid)
Nurses Nicole/Beki
Welcome home!
Late yesterday afternoon (Saturday), in PICU, the doctors thought you were stable enough to send us back to Oncology, Unit 1. After giving you one more bolis of fluid to make sure circulation was ok we could be moved back to Unit 1. The "quick" bolis actually took us till 6:00 pm to get the conformation the docs were happy with. The resident came back and explained that things were just a little nuts, but to rest assure we would get over soon and then again delayed while the nurses did a shift change. Mom and Auntie Tannis had gone out for supper and get you fish sticks (another request from you) and Uncle Dustin stayed to help me get you moved. Side note: Uncle Dusty and Auntie Tannis came Saturday to help out and are staying until Sunday.
At 8:00 pm, Dee the ICU nurse, helped us get you back to Unit 1 and its great to be "home." The nurses there were all excited to see you too. We were settled right away, the nurses said the nights priority was to get you to sleep. They had the evening doc ready to do a quick evaluation, the nurses did vitals and then we all worked to settle you in to go to sleep. Everything seemed to be going back to routine except for one big change for me, you wanted nothing to do with me, its was all about Uncle Dustin, how quick you lost trust haha. You had to sit in the chair with Uncle, you had to have him vacuum out your mouth, he had to pick out your snack and then hold your hand while you went to sleep. After you settle, Uncle went to join Auntie and Mom at RMH to get some sleep.
The night is like heaven back in Unit 1, we both get a much needed sleep with very little disruption. I wake up well rested and ready for a new day, you, however, wake still needing more sleep and I'm sure the pain is still wearing on you and the steroids making you hungry don't help. Uncle Dustin is by early to see you and you gravitate to him right away again. Not long after you mom and Auntie arrive and I take off to RMH for my shower, a little extra rest and some groceries, as your mom is headed home today.
You spend the morning sleeping on Auntie in the chair, but are still pretty irritated. At noon, I came back to the room and your mood quickly changed.....for the worse haha. You seem quite content with your mom and Aunt and I'm starting to think one of them may have to stay and I can go back to the Hat. Mom and Auntie leave and you and I get back to routine. You ask for every snack in the place and want none other than chocolate milk. They say anything you eat with the mouth sores you will never eat again in life, so much for chocolate milk and ice cream sandwiches. After a quick snack, you settle in for a nap, the nurses keep weaning you off oxygen so we can take the nose prongs out and by 4:00 pm you are just on blow bye (hose blowing oxygen towards you face). This allows you to sleep even better, you start to snore and reduce the sleep deficit.
Even though you are sleeping we can still see the mucisitis is bad. Your throat is swollen and so sore you didn't eat much today. You are also getting puffy again in your hands, feet, face and pelvis. They give you some medicine to try and pull all the fluids together so that your body can get rid of them. The meds seems slow acting but we don't want more to help it just yet, we will wait till the morning to give another dose. As usual, we are trying to fight so many side effects at once its hard to tell if we are getting anywhere making you comfortable. But tomorrow is another day, another challenge and I'm sure somewhere there will be another small victory.
You are my hero as always,
Dad
Here is a picture of you finally resting peacefully with Auntie Tannis.
Saturday, April 20, 2013
April 19th and 20th
Friday/ Saturday
Unit 1 and PICU
Weight: not able to get
Nurses: Layne, Francis
Support: RT, STEP
Moving Day.
Dad called early Friday morning to let me know things were not going well at all with your breathing.
They had to bring the Respiratory Team (RT) in to help suction out your mucus that is pooling at the top of your airway. It is very thick, you refuse to cough it up and as a result your oxygen saturation levels keep dropping. STEP (forget what is stands for, lol, but came down to assess you too and support the nurses to help stabilize a patient before having to go to PICU). Right now they decided to keep you in Unit 1 and try to help you with deep suction from the RT.
I came into the room on Friday morning. What I thought was hard yesterday was nothing compared to today. You have to sit straight up in your bed. You have an oxygen mask on, over your NG tube, your lips and nose are bleeding and your eyes are swollen. Your poor body is struggling to breathe. You are so tired, but you refuse to sleep.
During the afternoon, you manage to sleep a little bit and dad can go over to RMH to get some much needed rest. When you woke up your vitals were not very good. You had a low BP, a high HR, a fever and your blood oxygen levels were low again. We had to increase the oxygen in your mask. On Unit 1 their nose prongs, used for oxygen, only go up to a level 4 and currently you need a level 8 and even up to a level 10 if we need to take the mask off for a few seconds and then have to put it back on. To complicate things, you need a platelet transfusion and the nurses want to hold of on the deep suction etc. to make sure if you start bleeding you can stop. After the transfusion, the RT team comes down twice and gives you deep suction through your nose, this seems to help for a short time. The STEP team is called again and they stay to monitor you. They give you boules of saline to try drive up your BP, but that does not seem to help, they are now looking at other options such as meds. To add to your frustration you have to go to the washroom, but we can't get out of the bed due to the oxygen mask. You are mad that you have to have a diaper, you don't want to be a baby. I spend the afternoon holding the mask up because you just rip it off and hate having it touch your face. They order a chest x-ray and are able to confirm that your lungs are all clear and the congestion is just in the upper airway. You dad comes back and jumps in helping with your mask and trying to get you comfortable.
Well, our nurse, Layne, from Unit 1 has now moved into your room. We have RT, STEP and 3 Oncologists in our room. They all decide you need to move to the Pediatric Intensive Care Unit (PICU). I am not too sure what to think about this. I am glad you are going to receive more support there, but we like our Unit 1 nurses and doctors. Now, the Oncologists will collaborate with the PICU doctors during rounds, etc. I hope that you don't need the support in PICU long and we can go back to Unit 1 soon.
Your room in PICU is not like Unit 1. We have to leave all of our stuff in Unit 1, because there is no room here for personal belongings. There is a pull out cot thing for your dad to sleep on, but it is not comfortable at all and really low to the ground. They decide to order another chest x-ray to see if anything changed. When the results come back it shows that your lungs are clear still. I go back to RMH as it has been a long day for me and I need to take care of myself. It is about 9:00 pm when I leave and they have you all moved in. Again, it is hard to leave, especially knowing the pain you are in and how sleep deprived your dad is.
Saturday
In the morning I return to PICU to see you sitting up trying to rip off your nose prongs off. Your dad has not slept and is frustrated due to the lack of communication. On Unit 1, we are always included in decisions and we are told what your levels are, what meds you are receiving, etc. We are very much involved. In PICU, they have not told us anything, they are good at taking care of the patients and you are getting good care. The thing is your dad and I are just spoiled by always being kept up to date. Finally, Dr. Anderson and Dr. Ali (Oncologists) come by and give us an update. We all agree we have achieved the goal of controlling your BP and HR so we hope to get released back to Unit 1. Both doctors are sure to make sure we understand that your fever is still persistent so they are giving you antibiotics and pain is likely to get worse before it gets better so we will remain in hospital for morphine as well. In addition, they are not sure what your infection is, but they try different antibiotics to see if they can get the infection before they need more x-rays, CT scans, etc.
Dr. Ali informed us your white blood count is 0.0. This means you can only go up from here. Dr. Ali also said that we could have a few more days of this and this is the greatest time for infection. I hope your counts start to rise.
You refuse to sleep. You just want to sit up. You rub your eyes because you are so tired and then you hit the nose prongs and then you try ripping them out again. So frustrating!!! You need to sleep, but fight it with everything you got.
Uncle Dustin and Auntie Tannis are coming up this morning to help me. This way your dad can maybe go to the RMH to get some much needed sleep. I am so thankful that they are coming up. Sometimes you don't realize you need help, but then when you are getting it, it relives some of the stress.
I hope I got everything in this post. The last day was so busy, crazy and stressful. Today has started the same. My only hope is that we can get back to Unit 1 so we can get back to our new normal. You are finally "sleeping" at 11:30 am. You keep waking up and rubbing your nose and then you go back to sleep. When you are sleeping, you sing and play with your hands. You are never still.
Time to rest, now that you are dozing. I just wanted to keep everyone posted. We are all praying that your body can heal quickly.
Love you so much buddy,
Mom
Unit 1 and PICU
Weight: not able to get
Nurses: Layne, Francis
Support: RT, STEP
Moving Day.
Dad called early Friday morning to let me know things were not going well at all with your breathing.
They had to bring the Respiratory Team (RT) in to help suction out your mucus that is pooling at the top of your airway. It is very thick, you refuse to cough it up and as a result your oxygen saturation levels keep dropping. STEP (forget what is stands for, lol, but came down to assess you too and support the nurses to help stabilize a patient before having to go to PICU). Right now they decided to keep you in Unit 1 and try to help you with deep suction from the RT.
I came into the room on Friday morning. What I thought was hard yesterday was nothing compared to today. You have to sit straight up in your bed. You have an oxygen mask on, over your NG tube, your lips and nose are bleeding and your eyes are swollen. Your poor body is struggling to breathe. You are so tired, but you refuse to sleep.
During the afternoon, you manage to sleep a little bit and dad can go over to RMH to get some much needed rest. When you woke up your vitals were not very good. You had a low BP, a high HR, a fever and your blood oxygen levels were low again. We had to increase the oxygen in your mask. On Unit 1 their nose prongs, used for oxygen, only go up to a level 4 and currently you need a level 8 and even up to a level 10 if we need to take the mask off for a few seconds and then have to put it back on. To complicate things, you need a platelet transfusion and the nurses want to hold of on the deep suction etc. to make sure if you start bleeding you can stop. After the transfusion, the RT team comes down twice and gives you deep suction through your nose, this seems to help for a short time. The STEP team is called again and they stay to monitor you. They give you boules of saline to try drive up your BP, but that does not seem to help, they are now looking at other options such as meds. To add to your frustration you have to go to the washroom, but we can't get out of the bed due to the oxygen mask. You are mad that you have to have a diaper, you don't want to be a baby. I spend the afternoon holding the mask up because you just rip it off and hate having it touch your face. They order a chest x-ray and are able to confirm that your lungs are all clear and the congestion is just in the upper airway. You dad comes back and jumps in helping with your mask and trying to get you comfortable.
Well, our nurse, Layne, from Unit 1 has now moved into your room. We have RT, STEP and 3 Oncologists in our room. They all decide you need to move to the Pediatric Intensive Care Unit (PICU). I am not too sure what to think about this. I am glad you are going to receive more support there, but we like our Unit 1 nurses and doctors. Now, the Oncologists will collaborate with the PICU doctors during rounds, etc. I hope that you don't need the support in PICU long and we can go back to Unit 1 soon.
Your room in PICU is not like Unit 1. We have to leave all of our stuff in Unit 1, because there is no room here for personal belongings. There is a pull out cot thing for your dad to sleep on, but it is not comfortable at all and really low to the ground. They decide to order another chest x-ray to see if anything changed. When the results come back it shows that your lungs are clear still. I go back to RMH as it has been a long day for me and I need to take care of myself. It is about 9:00 pm when I leave and they have you all moved in. Again, it is hard to leave, especially knowing the pain you are in and how sleep deprived your dad is.
Saturday
In the morning I return to PICU to see you sitting up trying to rip off your nose prongs off. Your dad has not slept and is frustrated due to the lack of communication. On Unit 1, we are always included in decisions and we are told what your levels are, what meds you are receiving, etc. We are very much involved. In PICU, they have not told us anything, they are good at taking care of the patients and you are getting good care. The thing is your dad and I are just spoiled by always being kept up to date. Finally, Dr. Anderson and Dr. Ali (Oncologists) come by and give us an update. We all agree we have achieved the goal of controlling your BP and HR so we hope to get released back to Unit 1. Both doctors are sure to make sure we understand that your fever is still persistent so they are giving you antibiotics and pain is likely to get worse before it gets better so we will remain in hospital for morphine as well. In addition, they are not sure what your infection is, but they try different antibiotics to see if they can get the infection before they need more x-rays, CT scans, etc.
Dr. Ali informed us your white blood count is 0.0. This means you can only go up from here. Dr. Ali also said that we could have a few more days of this and this is the greatest time for infection. I hope your counts start to rise.
You refuse to sleep. You just want to sit up. You rub your eyes because you are so tired and then you hit the nose prongs and then you try ripping them out again. So frustrating!!! You need to sleep, but fight it with everything you got.
Uncle Dustin and Auntie Tannis are coming up this morning to help me. This way your dad can maybe go to the RMH to get some much needed sleep. I am so thankful that they are coming up. Sometimes you don't realize you need help, but then when you are getting it, it relives some of the stress.
I hope I got everything in this post. The last day was so busy, crazy and stressful. Today has started the same. My only hope is that we can get back to Unit 1 so we can get back to our new normal. You are finally "sleeping" at 11:30 am. You keep waking up and rubbing your nose and then you go back to sleep. When you are sleeping, you sing and play with your hands. You are never still.
Time to rest, now that you are dozing. I just wanted to keep everyone posted. We are all praying that your body can heal quickly.
Love you so much buddy,
Mom
Thursday, April 18, 2013
April 18th, 2013
Thursday
Unit 1
Weight: 13 kg
Nurse: Anya
I am back from Medicine Hat and so excited to see you and your dad. This has been the toughest "welcoming" since this whole process has started. You look so sad, your head is tilted to the side, there is no expression on your face and you are drooling, excessively. I try to remain strong, but can't bear to see you in such pain. I cry on your dad and wonder how we are going to get through this. How fair is this? There is nothing to prepare you to look at your son, suffering. I just want to take this way. I will post a picture of you resting peacefully. This is after they increase your morphine.
So, medically you have a few things going on. We had good news yesterday (see previous post), but the chemo drugs you are taking have many side effects. One of the effects is mucousitis. This causes many sores in your mouth and down your GI track and because of the sores there is a lot of drool and mucus. Your dad and I use a suction tool to try to clear your mouth. As can be expected, you hate this. Sometimes you will let us get into your mouth and other times we have to trick you by using your suckie. It is so hard to see you like this. As soon as your numbers drop low enough, you will have a transfusion and then your numbers will increase which will help fight off the mucousitis.
You are now back on morphine through the IV. You won't tell us you are in pain, but we can tell. You are not yourself and you hands wither anytime you try to do anything. The Oncologist says the sores in your mouth are very painful. With all this going on the Oncologist thinks that the morphine is necessary for you to rest. I hope the morphine will bring a bit of your spark back. You don't want to eat, read books, cuddle or even go to the bathroom. You just lye on your bed, emotionless.
So on top of all this going on, your sisters won't be able to come up and visit this weekend. Abbi has a cough that has been lingering for awhile now. We don't think it is a good idea for her to be around you. Dad has not seen the girls since we left Medicine Hat. It breaks my heart knowing how much they wanted to come and also the fact that your dad feels the same way. We are hoping for next weekend.
Lots of people have been sending toys for you. Today we opened a lot of them and you watched. Even though you have little emotion, you didn't tell us to stop, which tells me you liked watching us. I hope to play with these toys soon.
We are officially done our first chemo treatment in the induction phase. I hope that you are able to bounce back soon. I definitely miss my Kallum. It tears my heart apart seeing you like this. I am just listening to you snore beside me and find peace knowing you are finally able to rest.
Here is a picture of some posters your sisters made with all the drawings kids have made you as we'll as some pictures of your family and friends. I have caught you looking over at them.
You had a rough evening, I will update tomorrow.
Love you more then you will ever know,
Mom
Unit 1
Weight: 13 kg
Nurse: Anya
I am back from Medicine Hat and so excited to see you and your dad. This has been the toughest "welcoming" since this whole process has started. You look so sad, your head is tilted to the side, there is no expression on your face and you are drooling, excessively. I try to remain strong, but can't bear to see you in such pain. I cry on your dad and wonder how we are going to get through this. How fair is this? There is nothing to prepare you to look at your son, suffering. I just want to take this way. I will post a picture of you resting peacefully. This is after they increase your morphine.
So, medically you have a few things going on. We had good news yesterday (see previous post), but the chemo drugs you are taking have many side effects. One of the effects is mucousitis. This causes many sores in your mouth and down your GI track and because of the sores there is a lot of drool and mucus. Your dad and I use a suction tool to try to clear your mouth. As can be expected, you hate this. Sometimes you will let us get into your mouth and other times we have to trick you by using your suckie. It is so hard to see you like this. As soon as your numbers drop low enough, you will have a transfusion and then your numbers will increase which will help fight off the mucousitis.
You are now back on morphine through the IV. You won't tell us you are in pain, but we can tell. You are not yourself and you hands wither anytime you try to do anything. The Oncologist says the sores in your mouth are very painful. With all this going on the Oncologist thinks that the morphine is necessary for you to rest. I hope the morphine will bring a bit of your spark back. You don't want to eat, read books, cuddle or even go to the bathroom. You just lye on your bed, emotionless.
So on top of all this going on, your sisters won't be able to come up and visit this weekend. Abbi has a cough that has been lingering for awhile now. We don't think it is a good idea for her to be around you. Dad has not seen the girls since we left Medicine Hat. It breaks my heart knowing how much they wanted to come and also the fact that your dad feels the same way. We are hoping for next weekend.
Lots of people have been sending toys for you. Today we opened a lot of them and you watched. Even though you have little emotion, you didn't tell us to stop, which tells me you liked watching us. I hope to play with these toys soon.
We are officially done our first chemo treatment in the induction phase. I hope that you are able to bounce back soon. I definitely miss my Kallum. It tears my heart apart seeing you like this. I am just listening to you snore beside me and find peace knowing you are finally able to rest.
Here is a picture of some posters your sisters made with all the drawings kids have made you as we'll as some pictures of your family and friends. I have caught you looking over at them.
You had a rough evening, I will update tomorrow.
Love you more then you will ever know,
Mom
Wednesday, April 17, 2013
April 17th, 2013
I just wanted to do a quick post to say that things have been crazy the last couple of days for you and dad. Dad is at the hospital right now and I am back in Medicine Hat. I am returning to Calgary tomorrow and together we can write an update together documenting the last couple of days.
All I want to say is that we did get your bone marrow biopsy/aspiration results back today. When you had this test done on April 1st, it showed that your marrow contained about 80-90 % abnormal cells. Today both tests on the biopsy and the aspiration samples reveal no signs of abnormal cells (0%). Yahoo!! This means the drugs that they are giving you during your chemo are working really well on the cancer cells, your body is responding well, over all to the chemo.
Can't wait to see you tomorrow!!
Love you buddy,
Mom
All I want to say is that we did get your bone marrow biopsy/aspiration results back today. When you had this test done on April 1st, it showed that your marrow contained about 80-90 % abnormal cells. Today both tests on the biopsy and the aspiration samples reveal no signs of abnormal cells (0%). Yahoo!! This means the drugs that they are giving you during your chemo are working really well on the cancer cells, your body is responding well, over all to the chemo.
Can't wait to see you tomorrow!!
Love you buddy,
Mom
Tuesday, April 16, 2013
April 15, 2013
Monday
Unit 1
Weight 13.4 kg
Nurses Bekie, Becky and Amy
Today was a tough day for you. Mom went home and you have another scheduled LP, so you were fasting, its a very emotional morning for you not to be eating. Mom stopped by before heading home to open birthday cards with me and to give you one last hug and kiss. I can't imagine how it must feel to have to head back to Medicine Hat. I know she is excited to see your sisters, but to leave you here must be hard.
You are 2nd in line for the LP, but today for some reason they have us come over and wait in the clinic for 20 minutes first. I don't think this routine is helping your mood and you have increased anxiety. You are starting to understand what each different test involves. While we wait you almost sob and keep saying "no pokes", "no medicine" or "no hurt my tummy". It breaks my heart. Today's LP is in the procedure room so its not quite as intimidating as the stark white operating rooms. I hope with time and health you begin to feel more at ease. The LP is quick, I barely get enough time to go back to the room and shower quick, you are awake before I get back.
Normal routine starts again when we return. You eat half a bag of rice chips, rice cakes, a cookie and popcorn. Also, once again they forget to bring your lunch, but as always the fabulous nursing staff is quick to get a custum ordered lunch order (your favorite fish sticks). However, before lunch comes you grow un-settled and go off to sleep, after an hour nap though you wake looking for your fish sticks and devour them quickly.
Now back to the tough day part, you just don't settle all day, your NG seems to be a non stop annoyance, you don't want to pee and its another day of no BM. Every time we change your lines for meds, draw blood or star fluids you just snap, walling arms, legs and your head tosses everywhere while you scream. The nurses think its the amount of time you have been on the steroids and the personality changes are happening, just 3 more days and we can start weening you off.
Auntie Chandra, Uncle Brandon, Carter and Mailey brought us supper, birthday cake and came to visit. For awhile you seemed content, you looked like you wanted to play with Carter and would actually respond to questions pertaining to him or Mailey. You didn't really want to eat though, you had a meatball, little yogurt then went into the buffet requests and eat just bites of each request.
Tomorrow is a new day, I just hope you have a better day, its so hard to see you down like this but keep reminding myself how tough you must be to keep going. The support for you and for our whole family has been overwhelming and the list of people that want to help and offer support is non-stop. You have a lot of people that believe in your courage and strength.
You will always be my Hero,
Dad
Unit 1
Weight 13.4 kg
Nurses Bekie, Becky and Amy
Today was a tough day for you. Mom went home and you have another scheduled LP, so you were fasting, its a very emotional morning for you not to be eating. Mom stopped by before heading home to open birthday cards with me and to give you one last hug and kiss. I can't imagine how it must feel to have to head back to Medicine Hat. I know she is excited to see your sisters, but to leave you here must be hard.
You are 2nd in line for the LP, but today for some reason they have us come over and wait in the clinic for 20 minutes first. I don't think this routine is helping your mood and you have increased anxiety. You are starting to understand what each different test involves. While we wait you almost sob and keep saying "no pokes", "no medicine" or "no hurt my tummy". It breaks my heart. Today's LP is in the procedure room so its not quite as intimidating as the stark white operating rooms. I hope with time and health you begin to feel more at ease. The LP is quick, I barely get enough time to go back to the room and shower quick, you are awake before I get back.
Normal routine starts again when we return. You eat half a bag of rice chips, rice cakes, a cookie and popcorn. Also, once again they forget to bring your lunch, but as always the fabulous nursing staff is quick to get a custum ordered lunch order (your favorite fish sticks). However, before lunch comes you grow un-settled and go off to sleep, after an hour nap though you wake looking for your fish sticks and devour them quickly.
Now back to the tough day part, you just don't settle all day, your NG seems to be a non stop annoyance, you don't want to pee and its another day of no BM. Every time we change your lines for meds, draw blood or star fluids you just snap, walling arms, legs and your head tosses everywhere while you scream. The nurses think its the amount of time you have been on the steroids and the personality changes are happening, just 3 more days and we can start weening you off.
Auntie Chandra, Uncle Brandon, Carter and Mailey brought us supper, birthday cake and came to visit. For awhile you seemed content, you looked like you wanted to play with Carter and would actually respond to questions pertaining to him or Mailey. You didn't really want to eat though, you had a meatball, little yogurt then went into the buffet requests and eat just bites of each request.
Tomorrow is a new day, I just hope you have a better day, its so hard to see you down like this but keep reminding myself how tough you must be to keep going. The support for you and for our whole family has been overwhelming and the list of people that want to help and offer support is non-stop. You have a lot of people that believe in your courage and strength.
You will always be my Hero,
Dad
Sunday, April 14, 2013
April 14th, 2013
Sunday
Unit 1
Weight: 13.55 kg
Nurses: Shantel
Let it Snow, Let it Snow, Let it Snow!
We went to bed to snow and woke up to even more snow. I am not sure if I will be heading back to the Hat today. My back can barely make it for the regular 3 hour drive so if I have to drive slow I am not too sure how I will feel. It is a good thing my friends brought up my boots, your dad on the other hand is braving the weather in runners and a hoodie.
You are pretty quiet this morning and not too interested in food. You only want to watch TV and drift in and out of sleep. You wake often because you have to go to the washroom. You have a lot of fluids going through you so unfortunately you must go to the washroom frequently. We offer you a diaper so you can rest longer, but you definitely do not want a diaper. We have reverted back to diapers at night, which you try protesting, but dad and the nurses can usually get one on when you are sleeping. You still need your diaper changed in the middle of the night, that is how much fluid is going through you.
Corbin and Aspen's birthdays were this weekend. Your dad and I had a hard time knowing you wouldn't be a part of the celebrations. It is great to hear how great the parties were, but I still have a hard swallowing the part that you are missing these big events. We have Gracie's birthday, the girls' dance recital and Gracie's Preschool graduation coming up. Only one parent will be attending these and no Kallum. Right now, this are big events for our family and we will only be able video tape it for you. I am so sorry you are going to miss these because you are stuck here. I am sorry to my girls, who want the family together to see these big events. I know we have an amazing family and they will bring celebrations up here for you to be a part of, but it won't be the same. Dad's birthday is tomorrow. I know it will be a quiet celebration, this is what he prefers right now. I guess that is one perk for staying in Calgary one more day, I can be here with dad for his birthday.
You continue to get chemo meds through your IV today. Still no side effects yet, but they do say that side effects come later on, around days 7 to 10 and we are on day 3 of this cycle.
Lunch is macaroni and cheese and you decide to try it. You actually like it and are satisfied. We do decide to give you a bath today. I bought press and seal wrap at the store and it seems to work a lot better then the saran wrap we used before. You still don't like the bath but at least the "wrapping" part was easier for dad and I.
I wanted to also mention that we moved rooms at RMH. We were originally in a wheel chair accessible room with one queen bed, a sofa bed and a chair. It did not have a bath, just a large shower. I asked to possibly trade rooms because when you do come over to RMH you would need a bath. They weren't too sure this was possible, but then called back yesterday because a family was moving out. Your dad moved us yesterday to our new room. It is room #301 and it has 2 queen beds, a desk and it does have a bath tub. There was a small TV left too, so that is a bonus. I can't wait until we can take you back there and have a bit more freedom.
I will be leaving first thing in the morning so I can see your sisters and get some things done at home. I can only stay away 3 nights or we will loose our room at RMH. So this means I will be back on Thursday.
You refuse to have your picture taken today so I listen and stay away. Maybe tomorrow...
Love you buddy,
Mom
Unit 1
Weight: 13.55 kg
Nurses: Shantel
Let it Snow, Let it Snow, Let it Snow!
We went to bed to snow and woke up to even more snow. I am not sure if I will be heading back to the Hat today. My back can barely make it for the regular 3 hour drive so if I have to drive slow I am not too sure how I will feel. It is a good thing my friends brought up my boots, your dad on the other hand is braving the weather in runners and a hoodie.
You are pretty quiet this morning and not too interested in food. You only want to watch TV and drift in and out of sleep. You wake often because you have to go to the washroom. You have a lot of fluids going through you so unfortunately you must go to the washroom frequently. We offer you a diaper so you can rest longer, but you definitely do not want a diaper. We have reverted back to diapers at night, which you try protesting, but dad and the nurses can usually get one on when you are sleeping. You still need your diaper changed in the middle of the night, that is how much fluid is going through you.
Corbin and Aspen's birthdays were this weekend. Your dad and I had a hard time knowing you wouldn't be a part of the celebrations. It is great to hear how great the parties were, but I still have a hard swallowing the part that you are missing these big events. We have Gracie's birthday, the girls' dance recital and Gracie's Preschool graduation coming up. Only one parent will be attending these and no Kallum. Right now, this are big events for our family and we will only be able video tape it for you. I am so sorry you are going to miss these because you are stuck here. I am sorry to my girls, who want the family together to see these big events. I know we have an amazing family and they will bring celebrations up here for you to be a part of, but it won't be the same. Dad's birthday is tomorrow. I know it will be a quiet celebration, this is what he prefers right now. I guess that is one perk for staying in Calgary one more day, I can be here with dad for his birthday.
You continue to get chemo meds through your IV today. Still no side effects yet, but they do say that side effects come later on, around days 7 to 10 and we are on day 3 of this cycle.
Lunch is macaroni and cheese and you decide to try it. You actually like it and are satisfied. We do decide to give you a bath today. I bought press and seal wrap at the store and it seems to work a lot better then the saran wrap we used before. You still don't like the bath but at least the "wrapping" part was easier for dad and I.
I wanted to also mention that we moved rooms at RMH. We were originally in a wheel chair accessible room with one queen bed, a sofa bed and a chair. It did not have a bath, just a large shower. I asked to possibly trade rooms because when you do come over to RMH you would need a bath. They weren't too sure this was possible, but then called back yesterday because a family was moving out. Your dad moved us yesterday to our new room. It is room #301 and it has 2 queen beds, a desk and it does have a bath tub. There was a small TV left too, so that is a bonus. I can't wait until we can take you back there and have a bit more freedom.
I will be leaving first thing in the morning so I can see your sisters and get some things done at home. I can only stay away 3 nights or we will loose our room at RMH. So this means I will be back on Thursday.
You refuse to have your picture taken today so I listen and stay away. Maybe tomorrow...
Love you buddy,
Mom
Saturday, April 13, 2013
April 12th and 13th, 2013
Friday and Saturday
Unit 1
Weight: 13.2 kg
Nurse: Shantel / Kevin
Induction Stage Begins
Friday was a pretty busy day in Rm. 114. You woke up in a good mood and didn't complain too much about not being able to eat. At around 10 am you become a bit moody when they come to put cooling cream on your back, as you are scheduled to have a bone marrow aspiration done. They are able to take you right away, at 11 am, for the procedure. It is strange to say but these procedures are becoming almost "normal." It is not as scary for us and we go through the motions like old pros. You don't worry as much when we leave your room, we get to the procedure room and you hug dad as he holds you in his arms and they inject your medicine to make you go to sleep. Simple now, which seems so crazy to me. This is our "new" normal.
You wake up okay from the procedure and we head back up to your room. You are excited to finally eat. I almost get grossed out watching you eat. You devoured dunkaroos, bear paws, cereal bars and at the same time asking where your lunch was. Your lunch arrived and you were excited to see chicken nuggets and fries. You decided to dip the french fries into ranch this time.
Here are some pictures of you enjoying snacks and treats from the treat pail and then eating your lunch. That's right, we have a whole bucket of treats for you from friends and family!
We had some special visitors come to see you. Claire, Heather, Megan and Bridget came and brought some gifts as well as a truck load of baking. You are your typical self and don't acknowledge them. I catch you again listening to our conversation and then eventually fall asleep. Later on, you do wake up and try the baking, which you love and continue to love.
Today we start round two of your chemo-therapy. You have new meds, which are higher concentration then last round. You seemed fine with all the meds going into your IV. However, you are bothered by the bone marrow aspiration you had earlier in the day and you have a lot of pain in your lower back. They are giving you Tylenol for the pain.
You are becoming very moody and demanding. This is a side effect of the steroid and we are really starting to see that. Last night, I went out for a wonderful and much needed supper with my friends and came back to give dad some supper. Once I was back at RMH, I get a call from your dad. You keep demanding a hot dog and the kitchen has closed for the night. So, the girls and I drive to DQ to get you a hot dog and run it back to the hospital.
Dad and you did not have a good night. You had a lot of pain. I hope you get more sleep today (Saturday).
Saturday morning, you are called for your LP at 9 am. This is a bonus because you were just on a wait list, since it is the weekend, and you could have been called as late as the afternoon. Your LP went as scheduled, with no hiccups. You recovered well and wanted to go for a walk the minute you came back to the room.
The nurse did inform us that you need a dressing change over your broviac. This was not a pleasant experience for you or us. What scares me the most is that when we go home or even over to RMH, your dad and I are responsible for your dressing changes. I hope you start getting use to these dressing changes soon.
You continued with IV chemo meds too. You seem to be reacting well to the meds. We did give you a bit of morphine, as you were not settling. I think your back is still bothering you from yesterdays bone marrow aspiration.
We spent the remainder of the day eating, watching TV and playing with new toys. Overall it was a good day.
Love you to the moon and back,
Mom
Unit 1
Weight: 13.2 kg
Nurse: Shantel / Kevin
Induction Stage Begins
Friday was a pretty busy day in Rm. 114. You woke up in a good mood and didn't complain too much about not being able to eat. At around 10 am you become a bit moody when they come to put cooling cream on your back, as you are scheduled to have a bone marrow aspiration done. They are able to take you right away, at 11 am, for the procedure. It is strange to say but these procedures are becoming almost "normal." It is not as scary for us and we go through the motions like old pros. You don't worry as much when we leave your room, we get to the procedure room and you hug dad as he holds you in his arms and they inject your medicine to make you go to sleep. Simple now, which seems so crazy to me. This is our "new" normal.
You wake up okay from the procedure and we head back up to your room. You are excited to finally eat. I almost get grossed out watching you eat. You devoured dunkaroos, bear paws, cereal bars and at the same time asking where your lunch was. Your lunch arrived and you were excited to see chicken nuggets and fries. You decided to dip the french fries into ranch this time.
Here are some pictures of you enjoying snacks and treats from the treat pail and then eating your lunch. That's right, we have a whole bucket of treats for you from friends and family!
We had some special visitors come to see you. Claire, Heather, Megan and Bridget came and brought some gifts as well as a truck load of baking. You are your typical self and don't acknowledge them. I catch you again listening to our conversation and then eventually fall asleep. Later on, you do wake up and try the baking, which you love and continue to love.
Today we start round two of your chemo-therapy. You have new meds, which are higher concentration then last round. You seemed fine with all the meds going into your IV. However, you are bothered by the bone marrow aspiration you had earlier in the day and you have a lot of pain in your lower back. They are giving you Tylenol for the pain.
You are becoming very moody and demanding. This is a side effect of the steroid and we are really starting to see that. Last night, I went out for a wonderful and much needed supper with my friends and came back to give dad some supper. Once I was back at RMH, I get a call from your dad. You keep demanding a hot dog and the kitchen has closed for the night. So, the girls and I drive to DQ to get you a hot dog and run it back to the hospital.
Dad and you did not have a good night. You had a lot of pain. I hope you get more sleep today (Saturday).
Saturday morning, you are called for your LP at 9 am. This is a bonus because you were just on a wait list, since it is the weekend, and you could have been called as late as the afternoon. Your LP went as scheduled, with no hiccups. You recovered well and wanted to go for a walk the minute you came back to the room.
The nurse did inform us that you need a dressing change over your broviac. This was not a pleasant experience for you or us. What scares me the most is that when we go home or even over to RMH, your dad and I are responsible for your dressing changes. I hope you start getting use to these dressing changes soon.
You continued with IV chemo meds too. You seem to be reacting well to the meds. We did give you a bit of morphine, as you were not settling. I think your back is still bothering you from yesterdays bone marrow aspiration.
We spent the remainder of the day eating, watching TV and playing with new toys. Overall it was a good day.
Love you to the moon and back,
Mom
Thursday, April 11, 2013
April 11th, 2013
Thursday
Nurses: Becky
Here is a picture to start off with. You were "hiding" from the camera!
Today began with snow. I am so tired of the snow, especially in April. I took a picture of it and you thought it was pretty funny that I took a picture out the window. What a goof! This trip I packed a jacket so at least I have something for this crazy Calgary weather as I walk back and forth to RMH.
Unit 1
Weight: 13.25 kgNurses: Becky
Here is a picture to start off with. You were "hiding" from the camera!
Today began with snow. I am so tired of the snow, especially in April. I took a picture of it and you thought it was pretty funny that I took a picture out the window. What a goof! This trip I packed a jacket so at least I have something for this crazy Calgary weather as I walk back and forth to RMH.
Your dad and I were also given a lesson in caring for your broviac by our nurse, Becky. We had to learn how to do hypren-locking which protects the lines from blood clots, as well as change the dressing around your broviac. The tasks seems very daunting for me and I am glad that your dad likes doing and learning things like this and we will doing it at home together. We practiced on Chester, a manikin, and not on you.
We also met with Dr. Anderson. He came to give us a look into our future. He summed up the fact that you will probably be in Calgary the full 6 to 9 months. You may have an opportunity to stay at RMH, but would not be going back home to Medicine Hat until you were completely done your chemo. You have just completed the reduction stage, which was 7 days long and you finished today. You will now start the induction stage. There will be two parts of the induction stage, each lasting 21 days (approx.). There will be 7 days of chemo treatment and then 14 days without. After the induction stage you will have the continuous phase. There will also be 2 parts to this stage, each lasting 21 days (approx.). Then you will have a maintenance phase, which will be four parts, each last approximately 21 days. The induction phase, which starts tomorrow, will have some new medications which are Methotrexate, Doxorubicin, and Cyclophosphamide as well as the ones you had in the reduction stage. It is a lot to take in and we are taking the night to let it all absorb.
My favorite part of today was snuggling with you on the window bed. Your dad tends to be your favorite right now, which is to be expected since he does the majority of everything and spends the nights with you. However, today you let me have the snuggles and cuddles.
You have also been complaining that your mouth hurts when you drink. We have been trying to pump you full of fluid so you don't have to be hooked up to an IV again. It has been nice to have ditched the IV pole and I think you have been liking being free of it too. Anyways, dad finally grabbed the doctor's light "thingy" (lol) from off the wall and looked in your mouth. This is not an easy task as it involved forcing your mouth open and usually a finger being bitten. He saw some sores on the sides of your mouth. We let your nurse know and dad needed to repeat the whole mouth propping open process so she could see, the nurse let the doctor know and dad repeated once again. You are not happy, in fact you are screaming mad, your dad's fingers don't feel too well but everyone got a look and you are now back on morphine for the pain. You also need to do a mouth rinse to help relieve some pain from the sores. You are definitely not a fan of this. We try to show you what swishing and spitting look like, but at this point you are not doing anything. Well once again dad is holding you down on the bed while I swab your mouth with the rinse and try to get you to spit the rest out. I won't go into details but it wasn't good. We need to repeat this mouth rinse process before you eat...this is not going to be good.
Aunty Chandra and Mailey came for a visit. It was nice again to see some familiar faces. Aunty brought dad a foamy sponge for the bed at the hospital. Hopefully it will make his bed a little bit nicer to lye in.
Because you are not drinking much, obviously because of the sores in your mouth, you are back on saline. Hopefully the sores heal quickly so we can get back to drinking fluids. You will also have to fast after midnight tonight as you have a bone marrow aspiration in the morning. I am not too sure how the morning is going to go as you have an increased appetite. We will need some major distractions!
Love you buddy,
Mom
April 10th, 2013
Wednesday
Unit 1
Weight: 13.5 kg
Nurses: Melissa/Kaitlyn
I couldn't wait to see you and dad. The best sight was of you, without and cords attached to the IV pole. You are able to move around a lot easier. Your eyes are not as puffy and I see my Kallum again. I have brought more gifts and cards for you, as well as a beautiful quilt from Nanni (see picture). Your bed looks more like home and less like the hospital with your new quilt.
Dad also got you started on your "Beaded Journey." I took a picture of the start of your bead strand. The Beaded Journey is a way to honour and tell the story of your treatment path through beads placed on a rope. Beads come in different shapes and colors stand for the many important points, both medical and non-medical, along your treatment path.
Today was the first full day off the Morphine and with no IV's you got the hang of being able to walk around with some freedom from the pumps. The volunteers came to ask of you wanted to come play bingo (mom was not here yet) but you responded with an over whelming NO. They asked if you wanted to stay in your room and play via walkie talkie, yet another no. They asked to leave the stuff just in case you change your mind, I explained that these days mostly "no" meant "no," but we would try next week. Then guess what, not 5 minutes later we were in the sun shine room playing bingo, the only thing being more important than being stubborn was making me look foolish to the nurse. ;)
Your food cravings on the steroids are getting funnier too. New cravings are peanut butter on carrot muffins, animal crackers dipped in apple sauce, cinnamon raisin muffins with peanut butter (actually tried this one and its on the menu for my breakfast tomorrow). At about 9:00 pm, you want to walk to the fridge to get a Jello so we head to the kitchen. When we get there you not only pick a Jello, but want a pudding and a juice box too. As we leave the kitchen, the nurse says she is getting herself a piece of pizza, guess what, now K wants pizza too and don't forget a piece of toast with peanut butter. Another parent was telling me about her daughter demanding tacos at like 1:30 in the morning, can't wait for those days with you.
Love you K, glad to see more and more glimpses of you.
Mom and Dad
Unit 1
Weight: 13.5 kg
Nurses: Melissa/Kaitlyn
I couldn't wait to see you and dad. The best sight was of you, without and cords attached to the IV pole. You are able to move around a lot easier. Your eyes are not as puffy and I see my Kallum again. I have brought more gifts and cards for you, as well as a beautiful quilt from Nanni (see picture). Your bed looks more like home and less like the hospital with your new quilt.
Dad also got you started on your "Beaded Journey." I took a picture of the start of your bead strand. The Beaded Journey is a way to honour and tell the story of your treatment path through beads placed on a rope. Beads come in different shapes and colors stand for the many important points, both medical and non-medical, along your treatment path.
Today was the first full day off the Morphine and with no IV's you got the hang of being able to walk around with some freedom from the pumps. The volunteers came to ask of you wanted to come play bingo (mom was not here yet) but you responded with an over whelming NO. They asked if you wanted to stay in your room and play via walkie talkie, yet another no. They asked to leave the stuff just in case you change your mind, I explained that these days mostly "no" meant "no," but we would try next week. Then guess what, not 5 minutes later we were in the sun shine room playing bingo, the only thing being more important than being stubborn was making me look foolish to the nurse. ;)
Your food cravings on the steroids are getting funnier too. New cravings are peanut butter on carrot muffins, animal crackers dipped in apple sauce, cinnamon raisin muffins with peanut butter (actually tried this one and its on the menu for my breakfast tomorrow). At about 9:00 pm, you want to walk to the fridge to get a Jello so we head to the kitchen. When we get there you not only pick a Jello, but want a pudding and a juice box too. As we leave the kitchen, the nurse says she is getting herself a piece of pizza, guess what, now K wants pizza too and don't forget a piece of toast with peanut butter. Another parent was telling me about her daughter demanding tacos at like 1:30 in the morning, can't wait for those days with you.
Love you K, glad to see more and more glimpses of you.
Mom and Dad
Wednesday, April 10, 2013
April 9, 2013
Tuesday
Unit 1
Weight: 13.9 kg
Nurses: Anja/Kathy
Day 2 of just the boys and we are getting in the grove. Today is going to be day 2 of the "old" Kallum coming back to us. You have a new habit of wanting to sleep in, totally not something you would ever do at home. So at about 9:00 am, when you decide to get up we do our routine of going to the bathroom, being grumpy to the nurses as they give you the morning drug doses, weigh you and complete vitals. Breakfast comes and your appetite does not seem the same as what it was yesterday. A bit of muffin, a bite of an "eggo" (it was so dried out that it resembled a cracker) and that's about it. The whole morning is pretty un-eventful, but I talk to one of the doctors and we decide to wean you off the morphine a bit more. Also, the nutritionist agrees with me, that we could stop the feedings and work on your appetite.
Then comes lunch and the inner beast in you comes alive. You eat a turkey sandwich, half a plate of french fries, pretzels, a chocolate chip cookie and a cereal bar. You don't want to be carried to the bathroom anymore and you walk yourself, you sit up in bed and play cars and even want to go to the playroom. You laugh all afternoon, other than a small nap, and play with the nurses. By late date you are completely off the morphine and still seem to be doing well with no notable increase in pain, this means one less IV and no more heart monitor to keep us up at night. In the beginning I could not believe how brave you were to do all the tests and all the pokes, today you impressed me with your attitude, you proved you are a survivor and want to get better.
Can't stop this blog without mentioning tonight's supper. It was your first time eating fish sticks and I have to say you LOVED them, you actually demanded more. I asked for more but the kitchen was closed, so you moved on to a mashed potato, then sent me for a turkey sandwich and a rice crispy square from the cafeteria. I hope this appetite keeps up and we can take your feeding tube out soon too, the less things attached to you means more of a chance for you to be a kid, playing and walking on your own.
I miss you so much buddy, but I know that you are getting stronger everyday and dad is there with you. I am happy to be home, with the girls but wish you and dad were here too. The girls are doing well and make cards and posters for you everyday. They now know what Leukemia is and they know that you are getting special medicine to make your bones feel better. They cannot wait to see you. Abbi has a cold right now so we will have to wait until she is well enough, maybe next weekend. I leave tomorrow to come back to Calgary until Sunday. It will be hard to leave the girls but exciting to see you and dad. I hate having my family between two cities. See you soon.
Love you K'man,
Dad and Mom
Unit 1
Weight: 13.9 kg
Nurses: Anja/Kathy
Day 2 of just the boys and we are getting in the grove. Today is going to be day 2 of the "old" Kallum coming back to us. You have a new habit of wanting to sleep in, totally not something you would ever do at home. So at about 9:00 am, when you decide to get up we do our routine of going to the bathroom, being grumpy to the nurses as they give you the morning drug doses, weigh you and complete vitals. Breakfast comes and your appetite does not seem the same as what it was yesterday. A bit of muffin, a bite of an "eggo" (it was so dried out that it resembled a cracker) and that's about it. The whole morning is pretty un-eventful, but I talk to one of the doctors and we decide to wean you off the morphine a bit more. Also, the nutritionist agrees with me, that we could stop the feedings and work on your appetite.
Then comes lunch and the inner beast in you comes alive. You eat a turkey sandwich, half a plate of french fries, pretzels, a chocolate chip cookie and a cereal bar. You don't want to be carried to the bathroom anymore and you walk yourself, you sit up in bed and play cars and even want to go to the playroom. You laugh all afternoon, other than a small nap, and play with the nurses. By late date you are completely off the morphine and still seem to be doing well with no notable increase in pain, this means one less IV and no more heart monitor to keep us up at night. In the beginning I could not believe how brave you were to do all the tests and all the pokes, today you impressed me with your attitude, you proved you are a survivor and want to get better.
Can't stop this blog without mentioning tonight's supper. It was your first time eating fish sticks and I have to say you LOVED them, you actually demanded more. I asked for more but the kitchen was closed, so you moved on to a mashed potato, then sent me for a turkey sandwich and a rice crispy square from the cafeteria. I hope this appetite keeps up and we can take your feeding tube out soon too, the less things attached to you means more of a chance for you to be a kid, playing and walking on your own.
I miss you so much buddy, but I know that you are getting stronger everyday and dad is there with you. I am happy to be home, with the girls but wish you and dad were here too. The girls are doing well and make cards and posters for you everyday. They now know what Leukemia is and they know that you are getting special medicine to make your bones feel better. They cannot wait to see you. Abbi has a cold right now so we will have to wait until she is well enough, maybe next weekend. I leave tomorrow to come back to Calgary until Sunday. It will be hard to leave the girls but exciting to see you and dad. I hate having my family between two cities. See you soon.
Love you K'man,
Dad and Mom
Monday, April 8, 2013
April 8, 2013
Monday
Unit 1
14.55 kg
Meghan/Kathy
Today was day one with just me and you here, after another long night of your heart monitor beeping and random nurses covering us. You slept in late and really never "woke up," as once again "we" are fasting for an LP, yes, I said "we" cause I don't want to cook or eat in front of you (I still had my coffee cause its better for both of us). About 10:45 am you get your hunger again and get really mad that you can't have Macaroni and get angrier when you realize they didn't bring you a tray. They come for us at 11:30 am, today the LP is just on Unit 1, in the procedure room so I carry you over. Your a pro, so you just sit on the gurney, they clean your catheter and off to sleep you go, don't think you even blink. With your Mom gone this gives me about 20 minutes to shower myself and run to the cafeteria to get lunch. I finish just in time for them to bring you back. Now once again, post anesthetic, you want to eat and you want to eat now. First thing is 3/4 cup fruit loops, then you send me for toast and PB. I come back to the room to check on you, but your upset. I make the mistake of asking why, you say no more toast, you want a bagel (my bagel) so back to the toaster. I get back and the nurses follow me in for vitals and vitals are easy cause you are mowing down that bagel and care about nothing else. After a 1/4 of a bagel its an Oreo cookie, french fries, chocolate milk, safe to say we decide to skip your feeding.
After lunch you get pretty irritable and we all figure you look like you need a sleep, but we are wrong. We walk part way down to the fish before I have to carry you, however, today you finally say "my knees hurt," which is a good sign because you are able to isolate your pain. Back to bed to watch Monsters Inc., Antz, read books and just chill. Supper comes and your ready to eat again. You have some more french fries, chocolate pudding, chocolate milk, a little bit of ham and some pretzels. Looks like we may not have to use the feeding tube (other than sneaking in all your medicine).
Nurse Meghan comes in to ask if she can get a smile by end of shift and you just glare and say NO. I go to heat up my supper and go for a much needed walk. When I come back the lights are on, the bed is moving up and down and the TV channels are changing, talk about a mood swing. We spend the next 1/2 hour giggling and playing with a good number of the nurses, they are all glad to finally see a smile and hear your infectious laugh. I eat and we play on and even walk over to the fridge to pick out a snack, we try walking back but you tug one of the IV's and now we got a beep, so I carry you back to the room. We play some longer, but you are running out of energy, you ask to watch Elmo as you settle in for the night. Its been a great day and did not need to use the NG tube for feeding, you eat enough all on your own for the fist time in a long time. Tomorrow we are going to try and reduce your morphine a bit more so see how you do, lets hope its as successful as today was.
Love you K,
Dad
Unit 1
14.55 kg
Meghan/Kathy
Today was day one with just me and you here, after another long night of your heart monitor beeping and random nurses covering us. You slept in late and really never "woke up," as once again "we" are fasting for an LP, yes, I said "we" cause I don't want to cook or eat in front of you (I still had my coffee cause its better for both of us). About 10:45 am you get your hunger again and get really mad that you can't have Macaroni and get angrier when you realize they didn't bring you a tray. They come for us at 11:30 am, today the LP is just on Unit 1, in the procedure room so I carry you over. Your a pro, so you just sit on the gurney, they clean your catheter and off to sleep you go, don't think you even blink. With your Mom gone this gives me about 20 minutes to shower myself and run to the cafeteria to get lunch. I finish just in time for them to bring you back. Now once again, post anesthetic, you want to eat and you want to eat now. First thing is 3/4 cup fruit loops, then you send me for toast and PB. I come back to the room to check on you, but your upset. I make the mistake of asking why, you say no more toast, you want a bagel (my bagel) so back to the toaster. I get back and the nurses follow me in for vitals and vitals are easy cause you are mowing down that bagel and care about nothing else. After a 1/4 of a bagel its an Oreo cookie, french fries, chocolate milk, safe to say we decide to skip your feeding.
After lunch you get pretty irritable and we all figure you look like you need a sleep, but we are wrong. We walk part way down to the fish before I have to carry you, however, today you finally say "my knees hurt," which is a good sign because you are able to isolate your pain. Back to bed to watch Monsters Inc., Antz, read books and just chill. Supper comes and your ready to eat again. You have some more french fries, chocolate pudding, chocolate milk, a little bit of ham and some pretzels. Looks like we may not have to use the feeding tube (other than sneaking in all your medicine).
Nurse Meghan comes in to ask if she can get a smile by end of shift and you just glare and say NO. I go to heat up my supper and go for a much needed walk. When I come back the lights are on, the bed is moving up and down and the TV channels are changing, talk about a mood swing. We spend the next 1/2 hour giggling and playing with a good number of the nurses, they are all glad to finally see a smile and hear your infectious laugh. I eat and we play on and even walk over to the fridge to pick out a snack, we try walking back but you tug one of the IV's and now we got a beep, so I carry you back to the room. We play some longer, but you are running out of energy, you ask to watch Elmo as you settle in for the night. Its been a great day and did not need to use the NG tube for feeding, you eat enough all on your own for the fist time in a long time. Tomorrow we are going to try and reduce your morphine a bit more so see how you do, lets hope its as successful as today was.
Love you K,
Dad
Sunday, April 7, 2013
April 7th, 2013
Sunday
Unit 1
Weight: 14.7 kg
Nurse: Mary/Erin
Well last night was not the best but it wasn't really cause of you, the steroids you are on raise your blood pressure but it also lowers your heart rate. So for about 4 hours they take your blood pressure constantly and give various meds to reduce your blood pressure by making you pee and reducing the volumn of fluid in you. About 1:00 in the morning they let you settle in for the night but now your heart monitor goes going off every 5 minutes when your hear rate drops. So just as you hit your deep sleep and really get to rest the alarm rings, waking you just enough to raise our heart beat (Dad jumps every time) and we repeat this every 5-10 minutes, you are not getting a lot of rest.
What a day for us. You improved so much today and even with a decrease in your morphine. Your morning started with a bath, it has been awhile. We Saran wrap your chest (see picture) so your Broviac does not get wet. You are not too happy to be in the bath, but it went better then I expected.
You walked down the hallway today wiht all the girls cheering and saw the fish. You also decided to eat an Oreo cookie as well as a little milkshake. The best part of my day was when you put the BP cuff on Elmo as well as take his temperature and the nurse's temperature. You were so happy. I love seeing you happy and acting so silly.
The hardest part of my day was saying goodbye. It killed me to say goodbye to both you and Dad. I couldn't stop crying but your Dad and my friends helped me see that I had to be strong. I had to remember that I was going home to see my girls. I have missed them so much.
Tonight, I finally got to hug my girls. They are excited to be home and can't stop talking about everything they have been up to. I have missed them so much. After the hugs and kisses, I sat the girls down on the couch to talk about you and how are lives are going to change for awhile. I lied before, the hardest part of my day was trying to explain Leukemia to Abbi and Gracie and how it is invading your body and making your bones and blood sick. Your Dad was on speaker phone and helped explain and answer questions. The girls did well and asked a lot of good questions. There were tears and the girls want to be with you and Dad, but understand that you need the medicine that is in Calgary. They cannot wait to see you.
I have quite a few pictures to post, thanks to Morgan. They are mostly of you playing "nurse," seeing the fish and eating a cookie. I will also add a picture of your yummy lunch. Lol.
Love you to the moon and back,
Mom and Dad
Unit 1
Weight: 14.7 kg
Nurse: Mary/Erin
Well last night was not the best but it wasn't really cause of you, the steroids you are on raise your blood pressure but it also lowers your heart rate. So for about 4 hours they take your blood pressure constantly and give various meds to reduce your blood pressure by making you pee and reducing the volumn of fluid in you. About 1:00 in the morning they let you settle in for the night but now your heart monitor goes going off every 5 minutes when your hear rate drops. So just as you hit your deep sleep and really get to rest the alarm rings, waking you just enough to raise our heart beat (Dad jumps every time) and we repeat this every 5-10 minutes, you are not getting a lot of rest.
What a day for us. You improved so much today and even with a decrease in your morphine. Your morning started with a bath, it has been awhile. We Saran wrap your chest (see picture) so your Broviac does not get wet. You are not too happy to be in the bath, but it went better then I expected.
You walked down the hallway today wiht all the girls cheering and saw the fish. You also decided to eat an Oreo cookie as well as a little milkshake. The best part of my day was when you put the BP cuff on Elmo as well as take his temperature and the nurse's temperature. You were so happy. I love seeing you happy and acting so silly.
The hardest part of my day was saying goodbye. It killed me to say goodbye to both you and Dad. I couldn't stop crying but your Dad and my friends helped me see that I had to be strong. I had to remember that I was going home to see my girls. I have missed them so much.
Tonight, I finally got to hug my girls. They are excited to be home and can't stop talking about everything they have been up to. I have missed them so much. After the hugs and kisses, I sat the girls down on the couch to talk about you and how are lives are going to change for awhile. I lied before, the hardest part of my day was trying to explain Leukemia to Abbi and Gracie and how it is invading your body and making your bones and blood sick. Your Dad was on speaker phone and helped explain and answer questions. The girls did well and asked a lot of good questions. There were tears and the girls want to be with you and Dad, but understand that you need the medicine that is in Calgary. They cannot wait to see you.
I have quite a few pictures to post, thanks to Morgan. They are mostly of you playing "nurse," seeing the fish and eating a cookie. I will also add a picture of your yummy lunch. Lol.
Love you to the moon and back,
Mom and Dad
Saturday, April 6, 2013
April 6th, 2013
Saturday
Unit 1
Weight: 14.8 kg
Nurse: Mary/Orli
You were a little un-settled going to sleep tonight and pretty mad you had to pee so often, so we gave you some Gravol and off you went. The reason you are peeing so much is your blood pressure is a little high from all the saline and blood you got today with your first Chemo treatment. As a result, they gave you a drug that would pull some of the accees fluids out of you and you are peeing 200ml/ hour.
Today you had your second LP (Spinal Tap) so you had to fast again last night. This has become pretty normal routine for us but now you are on steriods and you seem to have cravings for food now. Mom came this morning and you wanted ice cream and a blueberry muffin, we had to tell you no and you get really upset and cry to mom, it breaks her heart to see you so upset. However, you do settle down and they come get you about 11:00 am to go back up to the operating room. When we go upstairs you decide you don't want to lay down and sit in your bed as you go up. Upstairs, this time they only let me carry you into the operating room, so we go in, they give you some meds and you go to sleep peacefully in my arms; I feel you are getting used to the chaos this life has become and trust that people are here to help and not hurt you.
While they do the LP your Mom and I take advantage of you being out of your room and turn all the lights on and open the blinds. You seem to like to live like Batman these days. They bring you back just after noon and the first thing you ask the nurses for is that blueberry muffin again. The nurse can see you mean business and orders one from the kitchen before even taking your vitals. The LP went well and they took advantage of having you under to clean up your feeding tube, remove some bandages and clean up the dressing on your CVC. Seems like you have a reputation building for anxiety and everyone wants to do what they can to assist.
Just after lunch you got some special company and they have brought a truck load of supplies for us and gifts galore. Morgan, Sarah and Debbie have made a trip to Calgary to vistit and deliver all the stuff we missed in our rush out the door in Medicine Hat. Mom starts to open the gifts, but your grumpy self has come back out and you want nothing to do with them. After some time Morgan convinces you to listen to a book and you start to open up a bit.
It was great to see friends up. I enjoyed a supper out and brought Dad back some. It was hard being away from the hospital and away fork you two. I don't know how I will handle leaving the two of you tomorrow. I am excited to see Abbi and Gracie, but completely torn that our family with be separated. I realized today, at supper, how hard this truly is going to be and it is only the beginning. This going back and forth will not be easy for any of us.
Here is a picture of a quilt, donated by the Ronald McDonald house, made by volunteers. It is Thomas the Train and it is beautiful. We are so lucky to stay at such a wonderful place.
Love you buddy,
Mom and Dad
You were a little un-settled going to sleep tonight and pretty mad you had to pee so often, so we gave you some Gravol and off you went. The reason you are peeing so much is your blood pressure is a little high from all the saline and blood you got today with your first Chemo treatment. As a result, they gave you a drug that would pull some of the accees fluids out of you and you are peeing 200ml/ hour.
Today you had your second LP (Spinal Tap) so you had to fast again last night. This has become pretty normal routine for us but now you are on steriods and you seem to have cravings for food now. Mom came this morning and you wanted ice cream and a blueberry muffin, we had to tell you no and you get really upset and cry to mom, it breaks her heart to see you so upset. However, you do settle down and they come get you about 11:00 am to go back up to the operating room. When we go upstairs you decide you don't want to lay down and sit in your bed as you go up. Upstairs, this time they only let me carry you into the operating room, so we go in, they give you some meds and you go to sleep peacefully in my arms; I feel you are getting used to the chaos this life has become and trust that people are here to help and not hurt you.
While they do the LP your Mom and I take advantage of you being out of your room and turn all the lights on and open the blinds. You seem to like to live like Batman these days. They bring you back just after noon and the first thing you ask the nurses for is that blueberry muffin again. The nurse can see you mean business and orders one from the kitchen before even taking your vitals. The LP went well and they took advantage of having you under to clean up your feeding tube, remove some bandages and clean up the dressing on your CVC. Seems like you have a reputation building for anxiety and everyone wants to do what they can to assist.
Just after lunch you got some special company and they have brought a truck load of supplies for us and gifts galore. Morgan, Sarah and Debbie have made a trip to Calgary to vistit and deliver all the stuff we missed in our rush out the door in Medicine Hat. Mom starts to open the gifts, but your grumpy self has come back out and you want nothing to do with them. After some time Morgan convinces you to listen to a book and you start to open up a bit.
It was great to see friends up. I enjoyed a supper out and brought Dad back some. It was hard being away from the hospital and away fork you two. I don't know how I will handle leaving the two of you tomorrow. I am excited to see Abbi and Gracie, but completely torn that our family with be separated. I realized today, at supper, how hard this truly is going to be and it is only the beginning. This going back and forth will not be easy for any of us.
Here is a picture of a quilt, donated by the Ronald McDonald house, made by volunteers. It is Thomas the Train and it is beautiful. We are so lucky to stay at such a wonderful place.
Love you buddy,
Mom and Dad
Friday, April 5, 2013
April 5th, 2013
Friday
Unit 1
Weight: 14.95 kg
Nurse: Ashley/Orli
Today was a busy day in your room. The nurses needed to get you ready for your first chemo treatment, through your IV. Dad took a picture at one time when you had all your machines beside you and at one point you even had 2 IV poles. They have since condensed them.
Two different nurses came in to administer your chemo medication. It takes about 15 mins all together. You just watch as they push through the meds. I should also mention that you are starting to look very puffy all over your body, not just your eyes.
You had a special basket delivered today from Grandpa, Grandma, Auntie Jena, Uncle Chris and Corbin. It has lots of activities in it and even some candy. You aren't interested in reading any of the books or playing the games, but maybe later on.
You required your first red blood transfusion today, as your hemoglobin count dropped. You did very well considering you have to have your BP taken every 15 minutes for the first hour. We figured out a trick. We put the BP cuff on your leg and keep it there. This way the nurse doesn't have to put it on every time and you are not agitated.
They say that you will increase your appetite being on the steroid medicine. We haven't seem much yet. Although you did have a few of my rice cakes and picked a cheese string from the fridge.
Okay, okay now for the good news!! Today, while Dad was out, you smiled! You started by switching the TV channels and you thought this was pretty funny. It warmed my heart to see you smile and eventually start to giggle. You let me tickle you too. This good attitude continued a bit passed supper and you even asked to leave the room. Dad carried you and we saw the rest of the unit and went to visit the fish. You were happy the whole time.
I did eventually leave tonight, but did not want to because you were in such a good mood. You told me not to go, which is a first, and it made me feels so bad but good at the same time. I love you so much buddy and I am beaming today knowing you had a great afternoon. Can't wait to see you in the morning. We also have special visitors coming tomorrow.
I attached some pictures today. There is even one of you and I (can you tell that I didn't take the pic!). The one picture shows all the machines behind you, pumping in all your meds, etc. My favorite is when you are smiling!
Love you more than you know,
Mom
Sometimes the things we can't change, end up changing us.
Unit 1
Weight: 14.95 kg
Nurse: Ashley/Orli
Today was a busy day in your room. The nurses needed to get you ready for your first chemo treatment, through your IV. Dad took a picture at one time when you had all your machines beside you and at one point you even had 2 IV poles. They have since condensed them.
Two different nurses came in to administer your chemo medication. It takes about 15 mins all together. You just watch as they push through the meds. I should also mention that you are starting to look very puffy all over your body, not just your eyes.
You had a special basket delivered today from Grandpa, Grandma, Auntie Jena, Uncle Chris and Corbin. It has lots of activities in it and even some candy. You aren't interested in reading any of the books or playing the games, but maybe later on.
You required your first red blood transfusion today, as your hemoglobin count dropped. You did very well considering you have to have your BP taken every 15 minutes for the first hour. We figured out a trick. We put the BP cuff on your leg and keep it there. This way the nurse doesn't have to put it on every time and you are not agitated.
They say that you will increase your appetite being on the steroid medicine. We haven't seem much yet. Although you did have a few of my rice cakes and picked a cheese string from the fridge.
Okay, okay now for the good news!! Today, while Dad was out, you smiled! You started by switching the TV channels and you thought this was pretty funny. It warmed my heart to see you smile and eventually start to giggle. You let me tickle you too. This good attitude continued a bit passed supper and you even asked to leave the room. Dad carried you and we saw the rest of the unit and went to visit the fish. You were happy the whole time.
I did eventually leave tonight, but did not want to because you were in such a good mood. You told me not to go, which is a first, and it made me feels so bad but good at the same time. I love you so much buddy and I am beaming today knowing you had a great afternoon. Can't wait to see you in the morning. We also have special visitors coming tomorrow.
I attached some pictures today. There is even one of you and I (can you tell that I didn't take the pic!). The one picture shows all the machines behind you, pumping in all your meds, etc. My favorite is when you are smiling!
Love you more than you know,
Mom
Sometimes the things we can't change, end up changing us.
Thursday, April 4, 2013
April 4th, 2013
Thursday
Nurse: Anya/Miriam
Surgery Day
Today you were on the waiting list to get you into surgery and therefore you were fasting. You needed to have your CVC (Central Venous Catheter) put in and a LP (Spinal Tap) in order to get a sample and to inject your first chemo treatment, through the spinal fluid. The type of CVC you will get is called a Broviac line and it has two ports. The reason for the Broviac catheter is to allow entry into the large veins for IV's fluids and allow drugs to be put directly into your heart where they are rapidly diluted and spread throughout the body. It also allows for blood transfusions and blood samples; therefore, no more pokes! The picture below show your new Broviac catheter.
We were given news that there was an opening at 1:30. Again, a porter came and got you from the room. We rolled you to the third floor, surgical suite. Dad and I had to gown up when we took you into the operating room. The room was very bright and there many doctors and nurses in the room. Dad was able to carry you into the room. I continued to give you kisses and reassure you as they put the medicine into your IV, but you wince in pain. Tears begin to flow and I don't want you to see. They finally put the sleepy medicine in and you lay peaceful in Daddy's arms. He gently lays you down on the table and that is our cue to leave. We are able to sneak in one last kiss and then we must leave you there. You cannot believe how gut wrenching it is to just leave you there knowing what is going to happen. Your Dad and I are escorted out and I can't stop crying. I feel like I am going to get sick. Your Dad comforts me in the hallway and we eventually leave. Your surgery will be a few hours so we try to have lunch and wait.
While we wait for your return, we talk to Dr. Anderson, your Oncologist, and Wendy, our social worker. They go over what to expect in the next few days. You will go through Reduction, which is receiving the three medications by IV once and then carry on with the steroid twice, daily. The medication you will be receiving is Vincristine, Cyclophosphamide and Prednisone (steroid). It will be intense and you will be closely monitored. We will start Reduction tomorrow. You will have a Lumbar Puncture (LP) on day 0, 2 and 4. Dr. Anderson will bring us a "road map" for us in the next couple of days to help us plan out our future. Dr. Anderson also wanted to hear about you today. I showed him pictures of you and your sisters. Dad described your love for hockey and your energetic personality. We talked about who you were before cancer decided to take over your body.
After surgery you are pretty tired and sleep most of the evening, catching up on some much needed rest. After talking with Dr. Anderson and the social worker me, Mom and I start to realize the effect this could have on how we operate as a family. Your first treatment they describe as light to moderate, they want to make sure they don't kill off the more sensitive mature cells too fast and plug or do damage to your kidneys. But, as the cells begin to die off the treatments will become more aggressive; for us this means total treatment should be 6 to 9 months, but most likely all that time will be spent in Calgary with little chance to go back to Medicine Hat. As your Mom said we are starting to plan how to manage the coming weeks and months, it will no doubt be filled by challenging decisions that must balance "home life" in Medicine Hat and your battle with cancer in Calgary.
I just talked to Dad on the phone and he said you finally ate some apple sauce tonight. This is a good sign as you have not ate much, by mouth, in a long time. Dad says you still don't want to watch hockey but you allowed him to watch as long as he mute the game, its didn't matter, the Canucks won anyways.
Here is a picture right after surgery. You can see your Broviac in your chest.
Love you to the moon and back,
Mom and Dad
"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us."
Nurse: Anya/Miriam
Surgery Day
Today you were on the waiting list to get you into surgery and therefore you were fasting. You needed to have your CVC (Central Venous Catheter) put in and a LP (Spinal Tap) in order to get a sample and to inject your first chemo treatment, through the spinal fluid. The type of CVC you will get is called a Broviac line and it has two ports. The reason for the Broviac catheter is to allow entry into the large veins for IV's fluids and allow drugs to be put directly into your heart where they are rapidly diluted and spread throughout the body. It also allows for blood transfusions and blood samples; therefore, no more pokes! The picture below show your new Broviac catheter.
We were given news that there was an opening at 1:30. Again, a porter came and got you from the room. We rolled you to the third floor, surgical suite. Dad and I had to gown up when we took you into the operating room. The room was very bright and there many doctors and nurses in the room. Dad was able to carry you into the room. I continued to give you kisses and reassure you as they put the medicine into your IV, but you wince in pain. Tears begin to flow and I don't want you to see. They finally put the sleepy medicine in and you lay peaceful in Daddy's arms. He gently lays you down on the table and that is our cue to leave. We are able to sneak in one last kiss and then we must leave you there. You cannot believe how gut wrenching it is to just leave you there knowing what is going to happen. Your Dad and I are escorted out and I can't stop crying. I feel like I am going to get sick. Your Dad comforts me in the hallway and we eventually leave. Your surgery will be a few hours so we try to have lunch and wait.
While we wait for your return, we talk to Dr. Anderson, your Oncologist, and Wendy, our social worker. They go over what to expect in the next few days. You will go through Reduction, which is receiving the three medications by IV once and then carry on with the steroid twice, daily. The medication you will be receiving is Vincristine, Cyclophosphamide and Prednisone (steroid). It will be intense and you will be closely monitored. We will start Reduction tomorrow. You will have a Lumbar Puncture (LP) on day 0, 2 and 4. Dr. Anderson will bring us a "road map" for us in the next couple of days to help us plan out our future. Dr. Anderson also wanted to hear about you today. I showed him pictures of you and your sisters. Dad described your love for hockey and your energetic personality. We talked about who you were before cancer decided to take over your body.
After surgery you are pretty tired and sleep most of the evening, catching up on some much needed rest. After talking with Dr. Anderson and the social worker me, Mom and I start to realize the effect this could have on how we operate as a family. Your first treatment they describe as light to moderate, they want to make sure they don't kill off the more sensitive mature cells too fast and plug or do damage to your kidneys. But, as the cells begin to die off the treatments will become more aggressive; for us this means total treatment should be 6 to 9 months, but most likely all that time will be spent in Calgary with little chance to go back to Medicine Hat. As your Mom said we are starting to plan how to manage the coming weeks and months, it will no doubt be filled by challenging decisions that must balance "home life" in Medicine Hat and your battle with cancer in Calgary.
I just talked to Dad on the phone and he said you finally ate some apple sauce tonight. This is a good sign as you have not ate much, by mouth, in a long time. Dad says you still don't want to watch hockey but you allowed him to watch as long as he mute the game, its didn't matter, the Canucks won anyways.
Here is a picture right after surgery. You can see your Broviac in your chest.
Love you to the moon and back,
Mom and Dad
"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us."
Wednesday, April 3, 2013
April 3rd, 2013
Wednesday
Unit 1
Weight: 14.05 kg
Nurse: Micaela/Ashley
Official Diagnosis Day!
Tonight we finally were given your full diagnosis. The type of Leukemia you have is ALL, Mature B cell. This now gives the team direction for treatments, etc. Tomorrow you will have many activities in order to get the chemotherapy started.
During the day you rested. You were in and out of sleep, but you were peaceful. You still don't like when a nurse comes in, especially to put the cuff on for your blood pressure. You told her to "stop" and "I don't want that." Your heart rate does increase when the nurse comes in the room, but your resting heart rate has come down since the beginning of all of this.
You did not eat anything today. You were fasting in the morning in hopes of an early diagnosis, which would mean surgery for a central line, but that didn't happen. You were fed by your NG at around 2 pm. You did get sick on it so we needed to slow down the feeds.
It was pizza day on Unit 1, but you chose not to participate. Your Dad and I went to get some pizza and pop.
You are still on morphine for pain control, but we did try Tylenol today too. It is suppose to be good for bone pain. You seemed to perk up more on it.
I added a picture of your shelves with some of your bears and cards and a pic of you sleeping peacefully.
Love Mom and Dad
Unit 1
Weight: 14.05 kg
Nurse: Micaela/Ashley
Official Diagnosis Day!
Tonight we finally were given your full diagnosis. The type of Leukemia you have is ALL, Mature B cell. This now gives the team direction for treatments, etc. Tomorrow you will have many activities in order to get the chemotherapy started.
During the day you rested. You were in and out of sleep, but you were peaceful. You still don't like when a nurse comes in, especially to put the cuff on for your blood pressure. You told her to "stop" and "I don't want that." Your heart rate does increase when the nurse comes in the room, but your resting heart rate has come down since the beginning of all of this.
You did not eat anything today. You were fasting in the morning in hopes of an early diagnosis, which would mean surgery for a central line, but that didn't happen. You were fed by your NG at around 2 pm. You did get sick on it so we needed to slow down the feeds.
It was pizza day on Unit 1, but you chose not to participate. Your Dad and I went to get some pizza and pop.
You are still on morphine for pain control, but we did try Tylenol today too. It is suppose to be good for bone pain. You seemed to perk up more on it.
I added a picture of your shelves with some of your bears and cards and a pic of you sleeping peacefully.
Love Mom and Dad
April 2nd, 2013
Tuesday
Unit 1
Weight: 14.4 kg
Nurse: Micaela/Miriam
Today you began the day by fasting because you were going to have a MRI sometime during the day. They had to squeeze you in so we didn't really know a time. You ended getting called at around 1:30 pm. You were sedated for the MRI and the whole procedure took around 2 hours.
After they brought you back to Unit 1, you were not in a good mood. During the procedure they lost your IV so you weren't getting your morphine. They brought in the Transport team in again to put in a new IV. This did not go well. At one point, I (mom) had to leave the room as I could not bear to hear you in so much pain. They did try giving you the Medazz medication to help relax you, but unfortunately it did not help. After numerous attempts to get the IV in your hands, they had to try your foot. After 30 minutes, they had a successful line in on your right foot. You are not too happy about it being on your foot, but now you have two hands to shoo away the nurses. :)
Is what your Mom didn't mention is how much you impressed the transport team, because even though they kept poking and missing, you kept watching. You starred in amazement as they poked you with the IV. I don't think you missed a single poke and you were really not as upset as one would think you should be. Today is the day that you showed everyone the guts and determination you have, the same determination that will get you through to the end.
You did eat some pretzels today but not much else. They have increased your NG feedings because you are not taking in many calories. The hospital food is not the greatest...I will take some pics soon so you can see what I mean. We have toast, apple sauce, pancakes, popsicles, etc, whenever you are hungry.
Love you buddy,
Mom and Dad
Unit 1
Weight: 14.4 kg
Nurse: Micaela/Miriam
Today you began the day by fasting because you were going to have a MRI sometime during the day. They had to squeeze you in so we didn't really know a time. You ended getting called at around 1:30 pm. You were sedated for the MRI and the whole procedure took around 2 hours.
After they brought you back to Unit 1, you were not in a good mood. During the procedure they lost your IV so you weren't getting your morphine. They brought in the Transport team in again to put in a new IV. This did not go well. At one point, I (mom) had to leave the room as I could not bear to hear you in so much pain. They did try giving you the Medazz medication to help relax you, but unfortunately it did not help. After numerous attempts to get the IV in your hands, they had to try your foot. After 30 minutes, they had a successful line in on your right foot. You are not too happy about it being on your foot, but now you have two hands to shoo away the nurses. :)
Is what your Mom didn't mention is how much you impressed the transport team, because even though they kept poking and missing, you kept watching. You starred in amazement as they poked you with the IV. I don't think you missed a single poke and you were really not as upset as one would think you should be. Today is the day that you showed everyone the guts and determination you have, the same determination that will get you through to the end.
You did eat some pretzels today but not much else. They have increased your NG feedings because you are not taking in many calories. The hospital food is not the greatest...I will take some pics soon so you can see what I mean. We have toast, apple sauce, pancakes, popsicles, etc, whenever you are hungry.
Love you buddy,
Mom and Dad
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