We have arrived home safely after our 2 night stay for Cheyenne's chemo. I was pleasantly surprised that we were able to stay out of the hospital the last round infection free. Cherry on the top was that a stomach bug hit our house last week and Cheyenne avoided it.
We went in for her bloodwork and assessment thursday for pre-admission. For some strange reason the machine eith 'accepts' the blood or 'rejects' it. This is the second time now where it has been rejected (remember a couple weeks back during the snowstorm?). The blood slide is then sent by taxi down to the JCC(Henderson) Hospital to be manually read. This meant an extra 2 hour wait for blood results. A long day for us and a couple other families thursday. Before we even left the hospital we had got the call that Cheyenne had a bed reseved for thursday night. We were fortunate to room with Cheyenne's friend Crystal and her mom Ida again. It makes such a difference when you are in a room with someone you know and can talk to. Even being able to leave the room and go off of the ward knowing that Cheyenne will have company is comforting. Cheyenne spent most of yesterday lounging in Crystal's bed. She keeps them laughing and helps to keep Crystals mind off her chemo. Cheyenne doesn't really know what her chemo does and how serious this is. To her it is no different than a cold, or a headache. For the older kids they understand so much more.
After chemo yesterday she was really nauseous, and so when supper cart came around she didn't want anything (in all fairness the fishsticks and fries arent exactly appetizing). Usually I bring along food from home and she will eat something. Although she didn't want her supper, she didn't want me to eat her perogies either, so our room ordered Swiss Chalet delivery. For a little girl who wasn't hungry, she ate the better portion of my meal.
As usual she was so excited to come home and see 'the kids'. We will be going back thursday next week and wednesday the week after. This will gain us a couple days to get her back on her original schedule so that she can finish her chemo just before her 5th birthday.
Thanks to all who have kept Cheyenne and our family in your prayers. We also are thankful for the many who have helped to meet our needs in so many different ways. We are truly humbled by your support.
Saturday, February 23, 2013
Friday, February 15, 2013
week 30
Yesterday we headed down to McMaster for counts. We went a day early for a couple reasons. First, her counts were not actually completed last week and I was concerned about her haemaglobin being even lower and potentially needing a transfusion. Second reason was that my sisters father in law, Grandpa Beef as the kids call him, passed away. The funeral is tomorrow but initially wasnt sure when it would be. While talking about funerals we overheard Cheyenne telling the other kids that Uncle Roy was going to plan her funeral. A long chat followed about how yes death is possible for all ages and that is why you must be prepared for eternity, but we pray that she will not die and that God will heal her from her cancer.
While at clinic yesterday I was amazed at Cheyenne's blood counts. Her neuts were 0.7 and her haemoglobin was 86. So we didnt have to have a transfusion, and so far it looks like her counts will be recovered high enough for chemo next week. She is scheduled to be inpatient next week and in order to proceed with the next round of chemo her neutrophils(immunity) have to be 0.75. Once Cheyenne starts to climb, she usually jumps leaps and bounds. This also is important to me because it will also mean that we won't have to do the gcsf shots. I realize that over time her body will get tired and have a harder time rebounding from the chemotherapy, but the less amount of things that she needs extra, the better.
Because Cheyenne's counts were ok yesterday, we were able to stop in and say hello to her classmates. She wasn't able to stay for the party, but she enjoyed just seeing everyone. Hopefully by April when the colds and flus should be over she will be able to resume going to school a couple days a week, dependent on her counts of course. You can really tell that she spends a lot of time interacting with adults. It shows in her mannerisms, vocabulary and behaviour.
On the home front we all seem to be over the cold that went around. Cassidy has popped 2 teeth in the past weekend, and I am very grateful for my happy little girl back. Words in her vocabulary include, HI, DAD, ITS HOT, and MAMA, but she never calls me that when I am around. Apparently she calls for me when I am not around, I wouldnt believe it, but yesterday when I came back from the appointment she was calling for me. The minute she saw me she started calling for dad. The kids and David all enjoyed the snow last weekend. Plenty of rides and tobogganing. It made for a quiet day indoors.
Please continue to pray for our family and Cheyennes healing.
While at clinic yesterday I was amazed at Cheyenne's blood counts. Her neuts were 0.7 and her haemoglobin was 86. So we didnt have to have a transfusion, and so far it looks like her counts will be recovered high enough for chemo next week. She is scheduled to be inpatient next week and in order to proceed with the next round of chemo her neutrophils(immunity) have to be 0.75. Once Cheyenne starts to climb, she usually jumps leaps and bounds. This also is important to me because it will also mean that we won't have to do the gcsf shots. I realize that over time her body will get tired and have a harder time rebounding from the chemotherapy, but the less amount of things that she needs extra, the better.
Because Cheyenne's counts were ok yesterday, we were able to stop in and say hello to her classmates. She wasn't able to stay for the party, but she enjoyed just seeing everyone. Hopefully by April when the colds and flus should be over she will be able to resume going to school a couple days a week, dependent on her counts of course. You can really tell that she spends a lot of time interacting with adults. It shows in her mannerisms, vocabulary and behaviour.
On the home front we all seem to be over the cold that went around. Cassidy has popped 2 teeth in the past weekend, and I am very grateful for my happy little girl back. Words in her vocabulary include, HI, DAD, ITS HOT, and MAMA, but she never calls me that when I am around. Apparently she calls for me when I am not around, I wouldnt believe it, but yesterday when I came back from the appointment she was calling for me. The minute she saw me she started calling for dad. The kids and David all enjoyed the snow last weekend. Plenty of rides and tobogganing. It made for a quiet day indoors.
Please continue to pray for our family and Cheyennes healing.
Friday, February 8, 2013
Week 29
This past week has not been the easiest, but we managed to stay home and not have any fevers, so for that we are grateful. The nasty cold bug that is going around found its way into our house and over the past week all 4 kids as well as Dave have been fighting it. Happy to say that it seems to be over, except for Cassidy, but she is teething also so it is hard to tell which symptoms are from what.
We headed to the hospital bright and early this morning. It was a long, crazy drive. The main roads hadn't even been plowed. I wasn't really concerned because we have 4 wheel drive but then we came to the huge windy hill going into Dundas. it was horrible. There were vehicles spinning out coming up the hill and people were going down the hill one at a time. Isn't too bad as long as everyone is patient.
Cheyenne was the second person into clinic so we didn't have to wait long, but we didn't get her complete counts. I do know that her haemoglobin and platelets have dropped some, but the results were still pending for her neutrophils(immunity). I called back when I got home, but I think the team finished up clinic early and headed home. I think in total only 5 kids came in today.
So I don't really know what her counts are like and we just have to watch for fevers. Please pray for Cheyenne that she will start feeling better, and that her blood counts will pick up. I will update the blog once I know what her counts are.
We headed to the hospital bright and early this morning. It was a long, crazy drive. The main roads hadn't even been plowed. I wasn't really concerned because we have 4 wheel drive but then we came to the huge windy hill going into Dundas. it was horrible. There were vehicles spinning out coming up the hill and people were going down the hill one at a time. Isn't too bad as long as everyone is patient.
Cheyenne was the second person into clinic so we didn't have to wait long, but we didn't get her complete counts. I do know that her haemoglobin and platelets have dropped some, but the results were still pending for her neutrophils(immunity). I called back when I got home, but I think the team finished up clinic early and headed home. I think in total only 5 kids came in today.
So I don't really know what her counts are like and we just have to watch for fevers. Please pray for Cheyenne that she will start feeling better, and that her blood counts will pick up. I will update the blog once I know what her counts are.
Saturday, February 2, 2013
Week 28 completed
We are home after Cheyenne's inpatient week 28. We were at clinic thursday for her fingerpoke and physical. Her counts were high enough for chemo to proceed but not as high as usual. They were 1.1. With everything going around they told me that her body is probably just trying to fight something off.
On thursday evening we headed in for hydration overnight. We were fortunate in that just before we got there the roommate had been discharged, and we had the room to ourselves until suppertime yesterday. Cheyenne was not in good spirits when we arrived and she never really perked up while there either. By yesterday she had developed a good productive cough. She has no fever so for now we take a watch and see approach.
Our stay was pretty uneventful, she was a little more nauseaus than normal, but they just gave her some additional gravol.
We were discharged this morning, and when we arrived home the kids were so excited to see each other. To my dismay all the kids have the cold. So I unpacked the bags, did wash, and am working on repacking the bags. I anticipate that if she gets a fever we will be back at the hospital.
Please pray for Cheyenne that her body can fight this cold. And that her counts will not bottom out for too long. Depending on what happens in the next few weeks could mean that she needs to be started on the GCSF needles.
On thursday evening we headed in for hydration overnight. We were fortunate in that just before we got there the roommate had been discharged, and we had the room to ourselves until suppertime yesterday. Cheyenne was not in good spirits when we arrived and she never really perked up while there either. By yesterday she had developed a good productive cough. She has no fever so for now we take a watch and see approach.
Our stay was pretty uneventful, she was a little more nauseaus than normal, but they just gave her some additional gravol.
We were discharged this morning, and when we arrived home the kids were so excited to see each other. To my dismay all the kids have the cold. So I unpacked the bags, did wash, and am working on repacking the bags. I anticipate that if she gets a fever we will be back at the hospital.
Please pray for Cheyenne that her body can fight this cold. And that her counts will not bottom out for too long. Depending on what happens in the next few weeks could mean that she needs to be started on the GCSF needles.
Friday, January 25, 2013
The past few weeks
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| Cheyenne enjoying the snow |
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| Wyatt posing for his picture on the GT |
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| Cheyenne getting a tow on the GT |
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| (L-R) Cheyenne, David and Brielle towing Wyatt behind |
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| Cassidy (just celebrated her first birthday) out for a stroll |
We have all been enjoying the snow over the past few weeks. As you can tell, the kids love to get suited up, helmets and all, and go for a ride. Because Cheyenne has had extensive reconstructive surgery to her head we have to be extra careful when she is tobogganing and such that she doesn't do any damage, so helmets are a necessity.
Today was a busy day at the hospital. Cheyenne had her bloodwork done, her counts aren't high (0.6) but are good considering where she is in her round. This is her low week, so usually we see 0.1. Next week she will be in Thursday for her counts and physical and then admitted at night if everything is good, and they have a bed. Please pray that her counts will continue to recover. Cheyenne also received her outpatient chemo today, NO tears.
After we visited with our friends, we went to see Dr Choi, her plastic surgeon. We were supposed to have a follow-up in December, and in the chaos over the holidays I forgot. Then she was supposed to see him last week and...I remembered after I had gotten home. You know how good this doctor is when he tells me not to bother with making an appointment, just stop in and see him when we have the time. Cheyenne really likes him. He is very kind and considerate to her and always asks if she has any questions. My 4 going on 40 year old has taken that to mean what is her opinion of the situation. She was acting really shy so I was saying to her (thinking she maybe didn't remember him, it had been awhile) that Dr Choi is the one who cut off bumpy. He was quick to reply that he just closed the hole the other doctors left behind. Cheyenne told him with a straight face, I know who you are, You're the reason I am here every week! Nothing like blaming your doctor for your problems.
Overall we have tried to stay around home and keep everyone as healthy as possible. Please pray that we will continue to be able to keep it that way. In order to keep Cheyenne off of the GCSF we need to keep her counts good, chemo on schedule and no fevers.
Monday, January 14, 2013
Done week 25
I realize I am a little late posting this one but I figured I may as well wait and write about todays outcome at the same time.
Cheyenne was able to get a bed on friday night. She was second on a waiting list of 17 kids needing chemo. There is a huge back log right now because there is so much illness being passed around. The simple runny nose can put these kids in the hospital if their counts are in the low range(i'll get to this a little later).
Cheyenne did well with her chemo this round. She munched away on a bag of pistachios which was a little unusual because she normally doesn't touch food once her chemo starts. When the doctor came around to see us on Saturday he asked for one and she told him "NO, You can't put your hands on my food they are dirty". Not that I let her be selfish, but she has figured out pretty quickly that she can get germs off of her food, now to teach that to others....
When Cheyenne was getting discharged on Sunday morning they wanted to give her a GCSF injection. This is a growth factor that stimulates the bone marrow to make more white blood cells. Because of Cheyenne's delay in treatment last week for her low counts, this is what her protocol calls for. We had a lot of unanswered questions and concerns about it so we chose to go back today and discuss further. I can't even put into words how having to make these decisions feel. There is no right or wrong decision, and we have to determine how this will effect her today, tomorrow and in the years to come(Lord willing). I will not go into the details of how we came to our decision, but I would like to ask that you please be respectful of it. I pray you never have to make such decisions.
After a lengthy meeting it was decided that we would forgo the GCSF treatment this cycle(3weeks). We pray that Cheyenne's counts will bounce back quickly as they have in the past. If Cheyenne ends up with prolonged neutropenia causing delay in treatment, or a hospitalization for an infection then she would start receiving the treatment in the following cycle. Because I would rather she not have to get the shots(oh yah, I would be giving her needles for 5-10 days each cycle) I really don't want her to get sick.
In order for us to keep Cheyenne as healthy as possible, we need to keep the germs away, so this is a kind reminder to all PLEASE don't visit if you are sick. Also for the well-being of EVERYBODY don't go to large group gatherings if you know you are sick. This includes school, church and parties. These kinds of viruses can be life-threatening to those with compromised immune systems.
Thank-you for your continued prayers and support.
Cheyenne was able to get a bed on friday night. She was second on a waiting list of 17 kids needing chemo. There is a huge back log right now because there is so much illness being passed around. The simple runny nose can put these kids in the hospital if their counts are in the low range(i'll get to this a little later).
Cheyenne did well with her chemo this round. She munched away on a bag of pistachios which was a little unusual because she normally doesn't touch food once her chemo starts. When the doctor came around to see us on Saturday he asked for one and she told him "NO, You can't put your hands on my food they are dirty". Not that I let her be selfish, but she has figured out pretty quickly that she can get germs off of her food, now to teach that to others....
When Cheyenne was getting discharged on Sunday morning they wanted to give her a GCSF injection. This is a growth factor that stimulates the bone marrow to make more white blood cells. Because of Cheyenne's delay in treatment last week for her low counts, this is what her protocol calls for. We had a lot of unanswered questions and concerns about it so we chose to go back today and discuss further. I can't even put into words how having to make these decisions feel. There is no right or wrong decision, and we have to determine how this will effect her today, tomorrow and in the years to come(Lord willing). I will not go into the details of how we came to our decision, but I would like to ask that you please be respectful of it. I pray you never have to make such decisions.
After a lengthy meeting it was decided that we would forgo the GCSF treatment this cycle(3weeks). We pray that Cheyenne's counts will bounce back quickly as they have in the past. If Cheyenne ends up with prolonged neutropenia causing delay in treatment, or a hospitalization for an infection then she would start receiving the treatment in the following cycle. Because I would rather she not have to get the shots(oh yah, I would be giving her needles for 5-10 days each cycle) I really don't want her to get sick.
In order for us to keep Cheyenne as healthy as possible, we need to keep the germs away, so this is a kind reminder to all PLEASE don't visit if you are sick. Also for the well-being of EVERYBODY don't go to large group gatherings if you know you are sick. This includes school, church and parties. These kinds of viruses can be life-threatening to those with compromised immune systems.
Thank-you for your continued prayers and support.
Thursday, January 10, 2013
No chemo :(
So we are enjoying a quiet night at home but not because of Cheyenne's counts, instead they have no available beds on the floor. Hopefully we will be able to get a bed tomorrow evening so that she can receive her chemo on Saturday.
This morning started out early with Cheyenne's fingerpoke and clinic visit. Fingerpoke went relatively smooth, and then we headed up to clinic for results. Her counts were great and had sprung up from 0.6 on monday to 3.0 today. Her platelets and hemoglobin were high and she has grown a little too. We got her port accessd in clinic because she handles regular staff better than if she got an unfamiliar nurse at admission. We also got her NG tube put back in. This didn't go so well and 2 nurses, the child life and myself wore the mini-wheats from Chey's breakfast. After we got her all cleaned up, she went out and did medical roleplay. I would love to know the statistics of how many chemo patients go on to be medical professionals.
When we were all done at clinic for the day we headed over to the unit so Cheyenne could visit Grandma Teresa, and I got a cuddle with sweet little Charlotte. Please pray for Jeremy and Jessica as they wait for Charlotte's test results. I can think back to the time of the 'unknown' with Cheyenne, and then getting the results. That wait was so hard, and getting the Cancer diagnosis wasn't easy, or the answer that we had hoped and prayed for. So please pray that they will soon get answers about Charlotte's health.
This morning started out early with Cheyenne's fingerpoke and clinic visit. Fingerpoke went relatively smooth, and then we headed up to clinic for results. Her counts were great and had sprung up from 0.6 on monday to 3.0 today. Her platelets and hemoglobin were high and she has grown a little too. We got her port accessd in clinic because she handles regular staff better than if she got an unfamiliar nurse at admission. We also got her NG tube put back in. This didn't go so well and 2 nurses, the child life and myself wore the mini-wheats from Chey's breakfast. After we got her all cleaned up, she went out and did medical roleplay. I would love to know the statistics of how many chemo patients go on to be medical professionals.
When we were all done at clinic for the day we headed over to the unit so Cheyenne could visit Grandma Teresa, and I got a cuddle with sweet little Charlotte. Please pray for Jeremy and Jessica as they wait for Charlotte's test results. I can think back to the time of the 'unknown' with Cheyenne, and then getting the results. That wait was so hard, and getting the Cancer diagnosis wasn't easy, or the answer that we had hoped and prayed for. So please pray that they will soon get answers about Charlotte's health.
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