Just a quick note. Scarlett is doing really well. She started crawling when they moved into their house but still would not walk. A little afraid, very weak and still in some pain.
When we were there 2 weeks ago she went over to the fireplace and sat on the hearth. Then she slowly pushed up with her hands and stood up. Of course everyone cheered and clapped. She did it a couple of times over the weekend. It was so cute as she gave her cute, shy little smile.
We spent Christmas there as we were not sure how she would be doing. Over the few days we were there she started walking back and forth between us. It was adorable. We are not even sure if she remembers that she used to walk. To her it is brand new and exciting. Bobbi said she has walked more and more each day.
She gets a little break from treatment over the holidays. She goes in on the 4th of Jan and then the 25th. Each time will be about a 4 day stay and it makes her quite tired out for a few days afterwards. Also a bit of an adjustment for the family as someone needs to stay with her.
All in all life is getting slightly back to normal. Scarlett still needs a lot of meds at home and a careful watch but seems to be responding well. She was born sweet and is still irresistable. She is just sweet and nice. She says the cutest things and we sure enjoyed her being a lot more like she used to be. Bobbi is expecting again - just barely - so she is tired and a bit sick. We are sure excited to have another one coming. Isabelle is doing fabulous in grade 1. I am loving having them close by and am getting quite used to that 2 hour trip.
Wednesday 28 December 2011
Friday 25 November 2011
Plugging Along!
Hello Everyone!
Its Bobbi here. Sorry it's been so long since I've posted but we have been so busy with the move and keeping up on Scarletts treatments. The days seem to just slip by so quickly. Thanks to my mom for doing such a great job keeping the blog updated.
We are so happy that Scarlett is in Remission! Our anniversary was definitely a wonderful day. Such great news. We are so proud of Scarlett for being such a fighter. Her body is responding so well to the Chemo. Up to this point, we couldn't ask for anything better, as far as results go. She has had so few complications in comparison to what can potentially happen. We are very lucky.
I am just going to explain in a bit more detail what exactly the "Remission" means. They said that when we first came in and they diagnosed Scarlett if we were to count the Cancer cells in her body at that time the number would have been around 10 to the 12th. So that's 10 with 12 zeros behind it. They have now, after the first month of treatment, reduced that number of cancer cells to 10 to the 8th. So basically they have taken 4 zeros off the number of Cancer cells. So now there are 10 with 8 zeros amount of Cancer cells in her body. That number is low enough to put the word "remission" on her disease. It doesn't mean the cancer is all gone. Scarlett was placed in the "low risk" Category. What the word risk refers to is simply - The chance of the disease returning after the full term of treatment. It does determine the treatment steps for phase two and so on but basically there is still room for complications and set backs. We are only 1 1/2 months into a 2 1/2 year treatment program. We still have a long way to go. If we were to stop treatment now or anytime along the way they are most certain that the Leukemia would return.
Today Scarlett and I are in the hospital. We were admitted for the first of 6 in hospital treatments. We have been here since Wednesday. She's doing so well. One of the main side effects of this round of treatment, besides knocking out her immune system, is vomiting. They give her anti nausea meds to keep it under control and so far she's been good. Her appetite has gone way down which is fine and expected.
I do have to say one thing....She has won the hearts of all the Dr.'s and Nurses here. They just LOVE her. She calls them by name, gives them high fives, fills them in on her favorite current cartoon, borrows their stethoscopes and listens to their hearts, asks them if they like the park?, if they want to come shopping with her? and much much more. Today the Dr. was laughing at something she was telling him and he said "Oh Scarlett, your my favorite patient!" We feel like she's receiving such great treatment and we are so thankful to be back in Canada.
Scarlett is back to her normal chatty self, most of the time. She still has grumpy moments but who can blame her? She is thriving at home. She just loves the space and comforts of home. She loves her own room and her own bed. She is sleeping very well and when she wakes up in the morning she just plays quietly in her bed until one if walks by her room and sees her awake.
Thank you all for your love, concern and support. Scarlett is such a lucky little girl to have such a huge span of people cheering for her! We can't express enough gratitude. Thank-you.
Its Bobbi here. Sorry it's been so long since I've posted but we have been so busy with the move and keeping up on Scarletts treatments. The days seem to just slip by so quickly. Thanks to my mom for doing such a great job keeping the blog updated.
We are so happy that Scarlett is in Remission! Our anniversary was definitely a wonderful day. Such great news. We are so proud of Scarlett for being such a fighter. Her body is responding so well to the Chemo. Up to this point, we couldn't ask for anything better, as far as results go. She has had so few complications in comparison to what can potentially happen. We are very lucky.
I am just going to explain in a bit more detail what exactly the "Remission" means. They said that when we first came in and they diagnosed Scarlett if we were to count the Cancer cells in her body at that time the number would have been around 10 to the 12th. So that's 10 with 12 zeros behind it. They have now, after the first month of treatment, reduced that number of cancer cells to 10 to the 8th. So basically they have taken 4 zeros off the number of Cancer cells. So now there are 10 with 8 zeros amount of Cancer cells in her body. That number is low enough to put the word "remission" on her disease. It doesn't mean the cancer is all gone. Scarlett was placed in the "low risk" Category. What the word risk refers to is simply - The chance of the disease returning after the full term of treatment. It does determine the treatment steps for phase two and so on but basically there is still room for complications and set backs. We are only 1 1/2 months into a 2 1/2 year treatment program. We still have a long way to go. If we were to stop treatment now or anytime along the way they are most certain that the Leukemia would return.
Today Scarlett and I are in the hospital. We were admitted for the first of 6 in hospital treatments. We have been here since Wednesday. She's doing so well. One of the main side effects of this round of treatment, besides knocking out her immune system, is vomiting. They give her anti nausea meds to keep it under control and so far she's been good. Her appetite has gone way down which is fine and expected.
I do have to say one thing....She has won the hearts of all the Dr.'s and Nurses here. They just LOVE her. She calls them by name, gives them high fives, fills them in on her favorite current cartoon, borrows their stethoscopes and listens to their hearts, asks them if they like the park?, if they want to come shopping with her? and much much more. Today the Dr. was laughing at something she was telling him and he said "Oh Scarlett, your my favorite patient!" We feel like she's receiving such great treatment and we are so thankful to be back in Canada.
Scarlett is back to her normal chatty self, most of the time. She still has grumpy moments but who can blame her? She is thriving at home. She just loves the space and comforts of home. She loves her own room and her own bed. She is sleeping very well and when she wakes up in the morning she just plays quietly in her bed until one if walks by her room and sees her awake.
Thank you all for your love, concern and support. Scarlett is such a lucky little girl to have such a huge span of people cheering for her! We can't express enough gratitude. Thank-you.
Sunday 20 November 2011
Phase 2
Well phase 2 has begun. It is pretty intense. It is going to keep them busy and Scarlett will be subjected to lots of medicine and teatments. She is on a small daily oral dose of chemotherapy at home. Then every couple of weeks she has to go and stay in the hospital for 3-4 days to receive about 24 hours of IV chemo. Then since that is so strong they give her folic acid which is actually an antidote for the chemotherapy to stop it. Then they keep her in for another day or so to make sure she is stable. Bobbi will have to stay there with her. Then Scarlett will receive other meds periodically. She will still receive 4 days of the dex steroid every few weeks and some other meds (I can't remember the names) at various times. All of this goes on for the next 6 months. After tests, if all goes well, she will then go into phase 3, which is a maintenance phase for 2 years. The greatest concern right now is that being on constant chemo gives her a very low immune system. They will have to be very diligent in keeping her (and the whole family) healthy and away from mass germs as much as possible.
They have been happy with being in a home of their own. Scarlett crawled a few steps in the family room about the second day in the house. Then the other day, Bobbi was upstairs and Isabelle started yelling, "Mom! Scarlett is on the stairs." Bobbi came to the top of the stairs and saw Scarlett climbing up the stairs. She was just grinning. She took it very slowly and favored the right leg a lot. The whole family started cheering and she made it all the way to the top of the stairs. So that was great news considering they had not even been in the house for a week. A home atmosphere can work miracles in our self-confidence.
I can not close without thanking everyone for prayers, love and concern. Even a little primary girl in my ward is very confident that her prayers are being heard and answered and she is right!!
They have been happy with being in a home of their own. Scarlett crawled a few steps in the family room about the second day in the house. Then the other day, Bobbi was upstairs and Isabelle started yelling, "Mom! Scarlett is on the stairs." Bobbi came to the top of the stairs and saw Scarlett climbing up the stairs. She was just grinning. She took it very slowly and favored the right leg a lot. The whole family started cheering and she made it all the way to the top of the stairs. So that was great news considering they had not even been in the house for a week. A home atmosphere can work miracles in our self-confidence.
I can not close without thanking everyone for prayers, love and concern. Even a little primary girl in my ward is very confident that her prayers are being heard and answered and she is right!!
Tuesday 15 November 2011
Best News Ever!!
Today Bobbi and Lance had a consult with the doctor to receive results of testing after her first 30 days of treatment. (phase 1) The doctor was so excited to meet with them! He said that he could not have hoped for better results! Scarlett has responded super well to this blast of drugs that were meant to basically put her in remission. Her blood tests were clear and so was her bone marrow! She is in remission! Yay for Scarlett - way to go, little girl! I was going to wait a few days and let Bobbi write this herself but I could not wait!!
There is still a journey ahead but this is wonderful news. We know that there are still cancer cells there. The test is such a small sample and we have a lot of cells. If treatment were to stop now, the cancer would most positively return. But the way she has responded to the treatment puts her into the LOW RISK category! This does not mean that she is in the clear. It means 2 and a half years of treatment and then testing up to 5 years. But it does mean that if she remains in remission till then it pretty much guarantees that the cancer will not return.
I believe that Bobbi said that her new treatment plan will start tomorrow and is pretty intense again for a bit. Bobbi can fill us in on more details as they learn more. They can expect that there may be unexpected hospital visits, maybe infections and possible concerns but still - super, duper positive news!! An extremely gratifying answer to fasting, prayers and a blessing. Thank you all for your prayers, thoughts and care.
HAPPY ANNIVERSARY BOBBI AND LANCE!!
There is still a journey ahead but this is wonderful news. We know that there are still cancer cells there. The test is such a small sample and we have a lot of cells. If treatment were to stop now, the cancer would most positively return. But the way she has responded to the treatment puts her into the LOW RISK category! This does not mean that she is in the clear. It means 2 and a half years of treatment and then testing up to 5 years. But it does mean that if she remains in remission till then it pretty much guarantees that the cancer will not return.
I believe that Bobbi said that her new treatment plan will start tomorrow and is pretty intense again for a bit. Bobbi can fill us in on more details as they learn more. They can expect that there may be unexpected hospital visits, maybe infections and possible concerns but still - super, duper positive news!! An extremely gratifying answer to fasting, prayers and a blessing. Thank you all for your prayers, thoughts and care.
HAPPY ANNIVERSARY BOBBI AND LANCE!!
Monday 14 November 2011
A home is going to help!
Scarlett has not been walking or even crawling and is still on pain meds for her legs. She is very hesitant to use them. Even a couple of times on the weekend if I picked her up the wrong way at all, it would hurt her. She sits quite still and needs to rest a lot. Even after sitting on the carpet a few minutes on Sunday she asked to be carried to the couch because she needed to rest she said.
Today Bobbi spent some time at the new house unpacking. Scarlett and Isabelle were playing in the family room on the carpet. Bobbi noticed that Scarlett (without really thinking) started crawling just a tiny bit to get to a toy or by Isabelle. It was slow and careful. Not very much at all ... but some. We are hoping for positive things being in a real home! Also Isabelle is so fun, imaginative and plays so creatively that she can't help but be good motivation for Scarlett to want to play. Moments like this are still few, but positive.
Her meds will also change again as phase 2 starts soon so we will see what that brings. We are all having fun trying adorable hats on her and each other!! (since Isabelle's head is about the same size and mine may not be that much bigger!!) Isabelle lost her first tooth while we were there this weekend and that was a thrill - life does go on.
Today Bobbi spent some time at the new house unpacking. Scarlett and Isabelle were playing in the family room on the carpet. Bobbi noticed that Scarlett (without really thinking) started crawling just a tiny bit to get to a toy or by Isabelle. It was slow and careful. Not very much at all ... but some. We are hoping for positive things being in a real home! Also Isabelle is so fun, imaginative and plays so creatively that she can't help but be good motivation for Scarlett to want to play. Moments like this are still few, but positive.
Her meds will also change again as phase 2 starts soon so we will see what that brings. We are all having fun trying adorable hats on her and each other!! (since Isabelle's head is about the same size and mine may not be that much bigger!!) Isabelle lost her first tooth while we were there this weekend and that was a thrill - life does go on.
Saturday 12 November 2011
Moving!
Here I am sitting in the Ronald McDonald House with my beautiful sleeping grand daughters. Bobbi and Lance are in Okotoks unpacking things that were brought up from Lethbridge today by some movers. Isabelle has a dreadful cold (that we sure hope Scarlett does not get) and Scarlett needs quite a bit of attention so I thought Bobbi and Lance could use some time in their house without the kids to care for. Besides I like it!! They have rented a very pretty house and are happy to have their own stuff. Scarlett does not even recognize anything as it was 2 years ago that they went to the Philippines! For Isabelle it is like Christmas with all of her toys from the past!!
Scarlett is losing her hair but is soooo lovable all the same!! She still gives you that little winning, flirting smile and looks at you like she is just teasing you to bits! What a sweetie! Took her medicine like a trooper for me tonight and let me sing to her and snuggle her to sleep. She is often quite quiet but then she gets chatting away! Her appetite is decreasing a bit as her meds are changing. In a few weeks they will know more about the next phase.
They are so excited to have a 'home' of their own now. Really ready for things to get as normal as possible. Lots of blessings as the forecast snowstorm did not materialize! (first snowstorm of the year is always a movers' nightmare!) It will probably take them at least a few days to vacate this place but what a blessing it has been for them. They are still so busy with hospital visits and all of the things they need to do with both girls. Lance is also working online for the Philippines company to help out the manager taking his place. The days are just packed full. Keeping everyone as healthy as possible is a full time job as well.
Thank you again to all, for your love and well wishes! We feel of your support, love and prayers! We really do! Bobbi and Lance often tell me how much they appreciate it! Bobbi wishes she could call or somehow thank and express appreciation to everyone but the time is just not theirs. From family and friends in Alberta, BC, the states and as far as away as the Philippines and Dan and Eiaw in Thailand!! You all make it easier to keep going and to feel loved!
Scarlett is losing her hair but is soooo lovable all the same!! She still gives you that little winning, flirting smile and looks at you like she is just teasing you to bits! What a sweetie! Took her medicine like a trooper for me tonight and let me sing to her and snuggle her to sleep. She is often quite quiet but then she gets chatting away! Her appetite is decreasing a bit as her meds are changing. In a few weeks they will know more about the next phase.
They are so excited to have a 'home' of their own now. Really ready for things to get as normal as possible. Lots of blessings as the forecast snowstorm did not materialize! (first snowstorm of the year is always a movers' nightmare!) It will probably take them at least a few days to vacate this place but what a blessing it has been for them. They are still so busy with hospital visits and all of the things they need to do with both girls. Lance is also working online for the Philippines company to help out the manager taking his place. The days are just packed full. Keeping everyone as healthy as possible is a full time job as well.
Thank you again to all, for your love and well wishes! We feel of your support, love and prayers! We really do! Bobbi and Lance often tell me how much they appreciate it! Bobbi wishes she could call or somehow thank and express appreciation to everyone but the time is just not theirs. From family and friends in Alberta, BC, the states and as far as away as the Philippines and Dan and Eiaw in Thailand!! You all make it easier to keep going and to feel loved!
Sunday 6 November 2011
Park Day
The day we went to look at the house we have rented was a sunny day. It was fairly warm and there was no wind. There is a little park just behind the house so after we were finished, we walked over. Parks are fairly safe for her as far as germs go. They are outside in the wide open. I think my mom mentioned this day a few posts ago....anyway we were only there for a few minutes but it was such a nice time. Scarlett LOVES the swings at parks so we wiped it down and started pushing her. She had the cutest little smile on her face. Lance made the comment to me "I haven't seen her smile like this for a long time." Isabelle enjoyed herself too. Here are a few pictures from that day. Enjoy.
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| Lance and Scarlett |
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| Scarlett |
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| Scarlett and Lance |
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| Isabelle |
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| Isabelle |
The Latest
Hello Everyone, It's Bobbi
Things are slowly moving along. Yesterday was a very emotional day for me for some reason. I guess those days will come and go.
Scarlett is hanging in there. She is really losing a lot of hair. It's all over everything. Her pillow, coats, hats, and the back of her shirt or Jammies is always covered. It's really hard for us to watch. She can't feel it but when I comb her hair after her bath the comb is full. The back of her head is pretty much bald. The front and the sides have a little bit more.
She is quite lethargic most of the time. She spends a lot of time just laying around either watching TV, looking at books, or just watching us putter around. She doesn't have a lot of energy and is very pale in color. She takes lots of little cat naps throughout the day in between her meals. She loves to snuggle her blanket and suck her thumb. She is still eating a ton of food so we are trying to keep up with that. The Meds are still a big challenge for everyone - twice a day.
Her mood is quite bad. She is pretty grumpy and quiet most of the time. We think the mood is a result of a few things combined...the meds(especially the dex steroid), she feels sick and yucky, and she's tired of it all. At our last appointment the Doctor came in and said "How's your little dex monster doing?" So it is a real, normal side effect of the drug.
There is still no progress with her walking or putting any weight on her legs. She did crawl on the bed for second the other day, so that's something. But she hasn't done it since and gets very agitated with us if we even try and prompt her or suggest trying to crawl or stand up. The Doctors aren't too worried about it...they say it will come with time. So we are just waiting.
It is so hard for Lance and I to see her this way. She is really not herself....at all. It's hard to watch your fun, happy full of energy and life little girl go to a sad, grumpy, sick, little bundle. There are brief moments where she seems to snap out of it and for just a second we get a glimpse of the sweet Scarlett we know. They are very brief and few and far between but we just love it when it happens and those moments help keep us going.
We still go into the hospital quite a bit for treatments and blood tests. On Thursday she has a big procedure and gets put under for it. They are taking some more bone marrow for testing as well as spinal fluid. Those are long hard days. She doesn't respond so well to anesthetic, it makes her feel quite sick. Along with the soreness from the procedure, makes it tough times. One of the hardest things about it this time is that she has to fast before hand. Her eating is so out of control along with her mood swings....it's going to be a very hard day.
We have rented a 3 bdrm house in Okotoks for the winter. It's only a 6 months lease. We will be transferring there in the next few weeks. We are quite excited to have our own space again. This living all in the 'same room thing' is getting a bit old. We will be traveling quite a bit for our hospital appointments but we have a bit of family out there who can help us out when we need it. The drive is only about 30 - 45 min so it's not too bad.
We still have no idea what the next 8 months or so of treatment will involve. They can't give us much detail because they still don't know how her cancer is responding to the treatment so far. By the end of November we will receive a lot more information. Basically she will be placed in one of three categories. Moderate, Low or Very low risk. Once they know that, they will design the next phase of treatment for her. We do know that either way it will involve a few admittances (2-3 days at a time, stay in hospital) as well as what they call pulses of steroids and Chemos. These pulses will come at different times with different lengths and different amounts. All the details are still to be figured out depending on her risk assessment.
In our personal lives we are not making any decisions farther than the six month lease we just signed. It's impossible for us to see exactly what we will be able to do, no plans can be made. There are just to many unknown variables at this time.
We still continue to be blown away at the amount of love and support we feel. Thank you everyone for all you have done.
Things are slowly moving along. Yesterday was a very emotional day for me for some reason. I guess those days will come and go.
Scarlett is hanging in there. She is really losing a lot of hair. It's all over everything. Her pillow, coats, hats, and the back of her shirt or Jammies is always covered. It's really hard for us to watch. She can't feel it but when I comb her hair after her bath the comb is full. The back of her head is pretty much bald. The front and the sides have a little bit more.
She is quite lethargic most of the time. She spends a lot of time just laying around either watching TV, looking at books, or just watching us putter around. She doesn't have a lot of energy and is very pale in color. She takes lots of little cat naps throughout the day in between her meals. She loves to snuggle her blanket and suck her thumb. She is still eating a ton of food so we are trying to keep up with that. The Meds are still a big challenge for everyone - twice a day.
Her mood is quite bad. She is pretty grumpy and quiet most of the time. We think the mood is a result of a few things combined...the meds(especially the dex steroid), she feels sick and yucky, and she's tired of it all. At our last appointment the Doctor came in and said "How's your little dex monster doing?" So it is a real, normal side effect of the drug.
There is still no progress with her walking or putting any weight on her legs. She did crawl on the bed for second the other day, so that's something. But she hasn't done it since and gets very agitated with us if we even try and prompt her or suggest trying to crawl or stand up. The Doctors aren't too worried about it...they say it will come with time. So we are just waiting.
It is so hard for Lance and I to see her this way. She is really not herself....at all. It's hard to watch your fun, happy full of energy and life little girl go to a sad, grumpy, sick, little bundle. There are brief moments where she seems to snap out of it and for just a second we get a glimpse of the sweet Scarlett we know. They are very brief and few and far between but we just love it when it happens and those moments help keep us going.
We still go into the hospital quite a bit for treatments and blood tests. On Thursday she has a big procedure and gets put under for it. They are taking some more bone marrow for testing as well as spinal fluid. Those are long hard days. She doesn't respond so well to anesthetic, it makes her feel quite sick. Along with the soreness from the procedure, makes it tough times. One of the hardest things about it this time is that she has to fast before hand. Her eating is so out of control along with her mood swings....it's going to be a very hard day.
We have rented a 3 bdrm house in Okotoks for the winter. It's only a 6 months lease. We will be transferring there in the next few weeks. We are quite excited to have our own space again. This living all in the 'same room thing' is getting a bit old. We will be traveling quite a bit for our hospital appointments but we have a bit of family out there who can help us out when we need it. The drive is only about 30 - 45 min so it's not too bad.
We still have no idea what the next 8 months or so of treatment will involve. They can't give us much detail because they still don't know how her cancer is responding to the treatment so far. By the end of November we will receive a lot more information. Basically she will be placed in one of three categories. Moderate, Low or Very low risk. Once they know that, they will design the next phase of treatment for her. We do know that either way it will involve a few admittances (2-3 days at a time, stay in hospital) as well as what they call pulses of steroids and Chemos. These pulses will come at different times with different lengths and different amounts. All the details are still to be figured out depending on her risk assessment.
In our personal lives we are not making any decisions farther than the six month lease we just signed. It's impossible for us to see exactly what we will be able to do, no plans can be made. There are just to many unknown variables at this time.
We still continue to be blown away at the amount of love and support we feel. Thank you everyone for all you have done.
Wednesday 2 November 2011
Staus update...
We are doing pretty good. Slowly we are starting to find some sort of routine and schedule. Things are still quite unpredictable at times but generally we are setting into the fact that yes she has Leukemia and this is how our life is going to be for a while. The fog over us seems to be lifting a little and we are starting to be able to think more than just a minute ahead. The days aren't full of emotional beak downs. (They still happen but not as often)
We can form complete sentences and generally feel more conscious. That may sound a bit weird to those of you who have never been hit over the head with the news of cancer. It really knocks you off your feet for a while especially when it's your baby girl. Things are just a blurrrr for a long time. However, we are finding our footing again....slowly.
The hardest times of the days are medication times. Morning and night....she HATES them and I don't blame her. It's extremely stressful trying to get her to take them and a lot of the time we end up having to pin her down and force them in. It's awful, and emotional for everyone involved. Lance and I do it together every time. I can't yet imagine having to do them alone. The other stressful days are clinic days. They always involve a poke and meds which she obviously doesn't like and they make her so sick. Also sitting there, in clinic, all day is hard with the extreme food cravings and constant eating. It's hard to stay prepared.
We are starting to talk about renting a house here in Calgary, close to the hospital for the winter. We are looking forward to the end of November when we get more information as to what the next 8 months are going to look like for Scarlett and for us. We are anxious for that time when we can find out how her cancer is responding to the Chemo Therapy and the Meds.
We are so unbelievably grateful to all those of you who have helped us through this so far. For all your thoughtful, encouraging messages. For all your love and support. We know we would never have made it this far without all of you. Thank you for being involved, even in the smallest way, and for caring so much.
Now we will just continue on...moving forward day by day....
We can form complete sentences and generally feel more conscious. That may sound a bit weird to those of you who have never been hit over the head with the news of cancer. It really knocks you off your feet for a while especially when it's your baby girl. Things are just a blurrrr for a long time. However, we are finding our footing again....slowly.
The hardest times of the days are medication times. Morning and night....she HATES them and I don't blame her. It's extremely stressful trying to get her to take them and a lot of the time we end up having to pin her down and force them in. It's awful, and emotional for everyone involved. Lance and I do it together every time. I can't yet imagine having to do them alone. The other stressful days are clinic days. They always involve a poke and meds which she obviously doesn't like and they make her so sick. Also sitting there, in clinic, all day is hard with the extreme food cravings and constant eating. It's hard to stay prepared.
We are starting to talk about renting a house here in Calgary, close to the hospital for the winter. We are looking forward to the end of November when we get more information as to what the next 8 months are going to look like for Scarlett and for us. We are anxious for that time when we can find out how her cancer is responding to the Chemo Therapy and the Meds.
We are so unbelievably grateful to all those of you who have helped us through this so far. For all your thoughtful, encouraging messages. For all your love and support. We know we would never have made it this far without all of you. Thank you for being involved, even in the smallest way, and for caring so much.
Now we will just continue on...moving forward day by day....
Food Food FOOD PLEASE!!
When we first started treatment the Dr.'s told us if we took a picture of Scarlett now and then again in a few months we wouldn't even recognize her. I was thinking she would be turning into this pale, frail, skinny bag of bones. Then the Dr. said...you won't recognize her because she will gain so much weight! We were like what?? He said that she will be waking up in the middle of the night asking for meals, that she would be obsessed with eating and with salty foods. They said it is a side effect of the Dex steroid she will be on. We honestly didn't believe them.
They were telling the truth.
The Food monster has surfaced and the cravings, midnight feedings, and pigging out is in full effect. I must say it's much more comforting than the ~ not eating anything ~ we were dealing with at first. However, it is still quite stressful. The obsession with food combined with the mood swings can be a lot to handle. Her cravings are so specific and demanding. She wants what she wants immediately. She becomes quite vocal about her requests. We are doing our best to keep up with her. She is definitely gaining weight and is so heavy to carry around. We can't go far without being armed with a bag of food.
Her main cravings consist of:
- McDonald Cheeseburgers
- Mac and Cheese
- Pasta with butter and salt
- Salad with Ranch dressing
- fried eggs
- hotdogs
The other day Lance was cutting up some strawberries and trying to talk her into having some...she was begging him to let her put salt on them! She was also asking for waffles with butter and salt...PLEASE!!
Last night before I went to bed I made a box of Macaroni and Cheese and fried up 6 eggs in preparation for the middle of the night feeding.....
Here are a few pic's of her...eating.
They were telling the truth.
The Food monster has surfaced and the cravings, midnight feedings, and pigging out is in full effect. I must say it's much more comforting than the ~ not eating anything ~ we were dealing with at first. However, it is still quite stressful. The obsession with food combined with the mood swings can be a lot to handle. Her cravings are so specific and demanding. She wants what she wants immediately. She becomes quite vocal about her requests. We are doing our best to keep up with her. She is definitely gaining weight and is so heavy to carry around. We can't go far without being armed with a bag of food.
Her main cravings consist of:
- McDonald Cheeseburgers
- Mac and Cheese
- Pasta with butter and salt
- Salad with Ranch dressing
- fried eggs
- hotdogs
The other day Lance was cutting up some strawberries and trying to talk her into having some...she was begging him to let her put salt on them! She was also asking for waffles with butter and salt...PLEASE!!
Last night before I went to bed I made a box of Macaroni and Cheese and fried up 6 eggs in preparation for the middle of the night feeding.....
Here are a few pic's of her...eating.
Halloween
My mom did a great job of summing up our family's Halloween fun. She
was a wonderful Grandma running from house to house with Isabelle on one
side and Luke on the other. Scarlett was quite lethargic and pale and
tired. We didn't stay long but we are glad she got to join in for a
little of the fun.
Here are a few of the pic's from the evening. Sorry some of them are such bad quality...they were taken with my Camera phone in the dark :S
Here are a few of the pic's from the evening. Sorry some of them are such bad quality...they were taken with my Camera phone in the dark :S
 |
| Isabelle with her cousin - Brody. She was an Italian Princess. |
 |
| Our little Lady bug. |
 |
| Family Pic.....not so great, Scarlett's costume was a bit top heavy....anyway you get the idea. |
 |
| I HAD to put this one up. It's of Isabelle after she slipped into her "sugar coma" once we got home. Grandma brought her this little stuffed poodle (a gift from a couple of grandma's friends) and she LOVES it. I found her with it stuffed inside her shirt for safe keeping while she sleeps. |
Tuesday 1 November 2011
Halloween party!!!
Well if any of you know Luke (Angi's 2 1/2 year old) and Isabelle you know that I had fun at the Halloween party. We had a fun supper at Jesse and Daelene's. The kids were all putting on costumes, makeup, etc. Kind of craaazeee!! but so fun! Lots of energy! Then the mad dash from house to house, the thrill of those treats dropping into the bucket, the feel of the bucket getting heavier and the sillouettes of trick or treaters running everywhere. After the second house, I said to Luke, "What do you say?" He says, "Wet's GO!!" Didn't take him long to catch on.
I was already there and Bobbi and Lance drove out later with Scarlett. Just so she could watch everyone for awhile. She asked for a cheeseburger all the way out to the house and after she got there that is all she would say when anyone talked to her. Otherwise she sat pretty quiet and just watched everyone. They did not give her a transfusion Monday because her counts were ok but she was pretty pale. She just kept quietly asking for a cheeseburger. Finally Nikki went out and got her a cheeseburger and she just quietly sat at the table focusing on her eating. Lance asked her if he could have some of her cheeseburger and she said, "No, you get yo' own." They brought her out to a few houses and then she watched the kids for a bit. Then Lance took her back in with Jeff and Eden. When we finished and Luke and Isabelle finally confessed that they were getting cold and tired we went back to examine the spoils.
Finally they were ready to go and Scarlett looked pretty pale. We sort of wondered if it had been wise to bring her but on the way home she said, "Mom! We went to Halloween pawty!" So even though she was pretty quiet she got to do something different and she was glad. The cheeseburger obviously was not enough because she ate at 3 am, 6 am and back in the kitchen asking Lance to make eggs by 9 am.
Chemo is brutal but we are grateful for many blessings. So glad they are here and together, grateful for a wonderful hospital, Ronald McDonald House, that Scarlett is eating and that she seems fairly stable, and for prayers and faith, family and friends. Just riding the roller coaster!
I was already there and Bobbi and Lance drove out later with Scarlett. Just so she could watch everyone for awhile. She asked for a cheeseburger all the way out to the house and after she got there that is all she would say when anyone talked to her. Otherwise she sat pretty quiet and just watched everyone. They did not give her a transfusion Monday because her counts were ok but she was pretty pale. She just kept quietly asking for a cheeseburger. Finally Nikki went out and got her a cheeseburger and she just quietly sat at the table focusing on her eating. Lance asked her if he could have some of her cheeseburger and she said, "No, you get yo' own." They brought her out to a few houses and then she watched the kids for a bit. Then Lance took her back in with Jeff and Eden. When we finished and Luke and Isabelle finally confessed that they were getting cold and tired we went back to examine the spoils.
Finally they were ready to go and Scarlett looked pretty pale. We sort of wondered if it had been wise to bring her but on the way home she said, "Mom! We went to Halloween pawty!" So even though she was pretty quiet she got to do something different and she was glad. The cheeseburger obviously was not enough because she ate at 3 am, 6 am and back in the kitchen asking Lance to make eggs by 9 am.
Chemo is brutal but we are grateful for many blessings. So glad they are here and together, grateful for a wonderful hospital, Ronald McDonald House, that Scarlett is eating and that she seems fairly stable, and for prayers and faith, family and friends. Just riding the roller coaster!
Sunday 30 October 2011
Still eating but...still on chemo too. Sun. Oct. 30,2011
Well I did not go up on Sat. Instead I am going up tonight (Sun.) and spending a couple days with them. I will hang out with Isabelle and Luke for Halloween at Jesse and Daelene's. I am so excited to see them. With a few sunny days here they have actually taken Scarlett to a park for just a little while. They let her just sit and swing in the swing (which every 2 year old loves). She sure enjoys a bit of fresh air. I think it is good for all of them.
Still eating so that is great. No more feeding tube!! Drugs are still a challenge and will be for awhile. Some days are better than others but it is difficult for sure. Her count is low and she is scheduled for a transfusion on Monday. They still spend a lot of time in the hospital even though they are discharged. They are really enjoying being together as a family even though sometimes it is tight quarters all in one room.
As always the whole family is grateful for so many kind words and prayers.
Still eating so that is great. No more feeding tube!! Drugs are still a challenge and will be for awhile. Some days are better than others but it is difficult for sure. Her count is low and she is scheduled for a transfusion on Monday. They still spend a lot of time in the hospital even though they are discharged. They are really enjoying being together as a family even though sometimes it is tight quarters all in one room.
As always the whole family is grateful for so many kind words and prayers.
Friday 28 October 2011
Appetite is back!
Here she is....eating! She loves noodles. Right now it's what she eats for 3 meals a day. Mac and Cheese, plain pasta with butter and salt are her favorite.
Thursday 27 October 2011
Hanging in there
Hey all, it's Bobbi.
Today was an ok day. We went to "Clinic" this morning for Scarletts blood tests and Chemotherapy. She did good for the Chemo but her blood tests came back with fairly low levels. They think she will be able to make it till Monday before she needs a transfusion but we were told to keep a close eye on her throughout the weekend. If she has a nose bleed or bleeding gums or any bruising we need to go straight in.
We think she's is doing much better being out of the hospital. She is eating way better and loves going for drives and walks around the house or outside (but it's SOOO cold in this country!). Anyway she is definitely still up and down and quite sick at times but overall we think it's been very good for her, mentally, to be here together as a family. Still no progress with the walking and with the sore legs but the Doctors aren't too concerned just yet. They say be patient, it will come.
The steroid she is on has lot's of side effects, one being extreme mood swings. Holy cow! Let me tell you there have been times where Lance and I have just looked at each other and said "Who IS she?" Lance actually asked the Dr. the other day if they had a resident exorcists on staff. haha.
When she is in a good mood and is being her normal happy self she just melts our hearts with her cuteness. We are constantly amazed at how grown up and mature she seems through everything. She will re explain situations and events in this adorable way. She has an amazing memory. One thing many of you may not know about Scarlett is that she is so positive and has been her whole life. Ever since she could talk everything has been "Great!" Seriously...
"Scarlett, how was your breakfast?" "GREAT!".
"Scarlett, how was school?" "GREAT!".
"Scarlett, how was your sleep?" "GREAT!".
and so on....you get the point. We always laugh because she is so consistently, well, GREAT!
This morning after she bravely finished swallowing the last of her meds, we asked her how was it? She was still shuddering from the taste but she put on her bravest face and said, yep you guessed it, "GREAT!", as she gulped down a glass of water to rinse the taste out. Lance and I laughed...she is so strong and it still shows through even though she's being put to the ultimate test.
We love that little angel face so much. We are so proud of her for being such a fighter.
Thanks for all your love and support.
Today was an ok day. We went to "Clinic" this morning for Scarletts blood tests and Chemotherapy. She did good for the Chemo but her blood tests came back with fairly low levels. They think she will be able to make it till Monday before she needs a transfusion but we were told to keep a close eye on her throughout the weekend. If she has a nose bleed or bleeding gums or any bruising we need to go straight in.
We think she's is doing much better being out of the hospital. She is eating way better and loves going for drives and walks around the house or outside (but it's SOOO cold in this country!). Anyway she is definitely still up and down and quite sick at times but overall we think it's been very good for her, mentally, to be here together as a family. Still no progress with the walking and with the sore legs but the Doctors aren't too concerned just yet. They say be patient, it will come.
The steroid she is on has lot's of side effects, one being extreme mood swings. Holy cow! Let me tell you there have been times where Lance and I have just looked at each other and said "Who IS she?" Lance actually asked the Dr. the other day if they had a resident exorcists on staff. haha.
When she is in a good mood and is being her normal happy self she just melts our hearts with her cuteness. We are constantly amazed at how grown up and mature she seems through everything. She will re explain situations and events in this adorable way. She has an amazing memory. One thing many of you may not know about Scarlett is that she is so positive and has been her whole life. Ever since she could talk everything has been "Great!" Seriously...
"Scarlett, how was your breakfast?" "GREAT!".
"Scarlett, how was school?" "GREAT!".
"Scarlett, how was your sleep?" "GREAT!".
and so on....you get the point. We always laugh because she is so consistently, well, GREAT!
This morning after she bravely finished swallowing the last of her meds, we asked her how was it? She was still shuddering from the taste but she put on her bravest face and said, yep you guessed it, "GREAT!", as she gulped down a glass of water to rinse the taste out. Lance and I laughed...she is so strong and it still shows through even though she's being put to the ultimate test.
We love that little angel face so much. We are so proud of her for being such a fighter.
Thanks for all your love and support.
Wednesday 26 October 2011
Noodles with butter and salt please! Wed, Oct 26
Yipee! Here is the text that Bobbi just sent me. "Oh my gosh. I am sitting here at 6 am with a starving 2 year old. Through the roof would be a good way to describe her appetite. All she wants is noodles with butter and salt. She ate them for every meal yesterday and just had a big bowl for breakfast with a piece of cheese and a piece of toast."
Wow it seems like anything else that happens will be easier to deal with now that she is eating! Even if she throws it up!! The dex steroid that she is on is what creates the appetite. About time it kicked in! I think she is on about 8 oral meds a day plus the ones that are 'every other day' or 'once a week' etc.
The Ronald McDonald House is fabulous!! They feel more like they are at home, even though Bobbi and Lance are much busier because they have to take care of her and do everything that the nurses were mostly doing. They still really have to be careful of germs, etc. but this eating sure takes away some of the worry. I am going up Saturday - can't wait to see them.
Wow it seems like anything else that happens will be easier to deal with now that she is eating! Even if she throws it up!! The dex steroid that she is on is what creates the appetite. About time it kicked in! I think she is on about 8 oral meds a day plus the ones that are 'every other day' or 'once a week' etc.
The Ronald McDonald House is fabulous!! They feel more like they are at home, even though Bobbi and Lance are much busier because they have to take care of her and do everything that the nurses were mostly doing. They still really have to be careful of germs, etc. but this eating sure takes away some of the worry. I am going up Saturday - can't wait to see them.
Monday 24 October 2011
Discharged
Hello everyone, It's Bobbi here.
We have been discharged from the hospital. It happened yesterday afternoon. To say we were scared to leave is an understatement. I need to make it clear that, in this case, discharge doesn't mean she's better. It only means she's stable. They really encourage parents to do a lot of the care giving as long as the patient is stable. They do this for a few reasons one being the mental benefits of not having to lay around in a boring, stale hospital room day in and day out. The other that it frees up a bed and staff for other not so stable kids. There are many things that can happen and if they do we will be immediately re admitted. For example, if Scarlett starts running a fever, then it's straight back in. We were also only released to the Ronald McDonald house as it is so close and we can return on a moments notice.
They sent us home with an IV stand and a huge bag full of medicines, syringes, tubes, medical tape, and more. Lance and I are now playing Doctor and it's quite scary. We really don't know what were doing but we are trying our hardest. She has 8 oral meds every day. It's very hard to get them down the hatch. Scarlett is quite sick as a result of all the medicine's along with the Chemo Therapy. She is throwing up a lot as well as having diarrhea. We are changing diapers and sheets and doing laundry like mad men. This morning she barfed up her feeding tube which was a very unpleasant experience for all involved.
Being discharged means 2-3 "Clinic" visits a week....or potentially more or less depending on her levels and how stable she is. She will always go in on Thursdays to receive her IV Chemo. Also on certain days she will have bone marrow aspirate tests or spinal tap tests scheduled. Today for example we went into clinic and her levels were quite bad. She needed a blood transfusion. We were there all day. However, once they stabilized her we got to come home, and eat dinner together and we get to go to bed together. We really think the change of scenery and the more home like atmosphere is really going to help Scarlett out Mentally and hopefully physically. We are hoping that by being in a more relaxed setting she will start using her legs more as well as eating more. The hospital is so drab and depressing....
Also, because the Chemotherapy really knocks out her immune system we have to keep her quite isolated from germs. She is what they call neutrophenic (please excuse the spelling) but is means that her body can't fight off even the simplest of viruses and they could become potentially fatal. That means no busy shopping malls or grocery stores. It means trying to keep her from coming in contact with people in general. It's ok though, as her condition seems to change on a dime...one minute she could be happy and the next she could be barfing and crying. Going out shopping might not be the safest/best idea right now.
We are allowed to go for drives and walks outside. She really loves being outside of the hospital even though we are limited as to what we can do it's so much more than we have been able to do this far. We are grateful for that and that we can be together every night.
We are really hoping to see and improvement in her appetite very soon. Some of the steroids she's on are supposed to really kick start her eating. They say anywhere between day 7-14 it should start. We are on day 11...so any moment now.
Things are changing every hour and we are just rolling with whatever comes at us next. Lance and I were saying today how the hours just go by so quickly. One thing to the next and then the days done.
Thank you again for all your love and support.
We have been discharged from the hospital. It happened yesterday afternoon. To say we were scared to leave is an understatement. I need to make it clear that, in this case, discharge doesn't mean she's better. It only means she's stable. They really encourage parents to do a lot of the care giving as long as the patient is stable. They do this for a few reasons one being the mental benefits of not having to lay around in a boring, stale hospital room day in and day out. The other that it frees up a bed and staff for other not so stable kids. There are many things that can happen and if they do we will be immediately re admitted. For example, if Scarlett starts running a fever, then it's straight back in. We were also only released to the Ronald McDonald house as it is so close and we can return on a moments notice.
They sent us home with an IV stand and a huge bag full of medicines, syringes, tubes, medical tape, and more. Lance and I are now playing Doctor and it's quite scary. We really don't know what were doing but we are trying our hardest. She has 8 oral meds every day. It's very hard to get them down the hatch. Scarlett is quite sick as a result of all the medicine's along with the Chemo Therapy. She is throwing up a lot as well as having diarrhea. We are changing diapers and sheets and doing laundry like mad men. This morning she barfed up her feeding tube which was a very unpleasant experience for all involved.
Being discharged means 2-3 "Clinic" visits a week....or potentially more or less depending on her levels and how stable she is. She will always go in on Thursdays to receive her IV Chemo. Also on certain days she will have bone marrow aspirate tests or spinal tap tests scheduled. Today for example we went into clinic and her levels were quite bad. She needed a blood transfusion. We were there all day. However, once they stabilized her we got to come home, and eat dinner together and we get to go to bed together. We really think the change of scenery and the more home like atmosphere is really going to help Scarlett out Mentally and hopefully physically. We are hoping that by being in a more relaxed setting she will start using her legs more as well as eating more. The hospital is so drab and depressing....
Also, because the Chemotherapy really knocks out her immune system we have to keep her quite isolated from germs. She is what they call neutrophenic (please excuse the spelling) but is means that her body can't fight off even the simplest of viruses and they could become potentially fatal. That means no busy shopping malls or grocery stores. It means trying to keep her from coming in contact with people in general. It's ok though, as her condition seems to change on a dime...one minute she could be happy and the next she could be barfing and crying. Going out shopping might not be the safest/best idea right now.
We are allowed to go for drives and walks outside. She really loves being outside of the hospital even though we are limited as to what we can do it's so much more than we have been able to do this far. We are grateful for that and that we can be together every night.
We are really hoping to see and improvement in her appetite very soon. Some of the steroids she's on are supposed to really kick start her eating. They say anywhere between day 7-14 it should start. We are on day 11...so any moment now.
Things are changing every hour and we are just rolling with whatever comes at us next. Lance and I were saying today how the hours just go by so quickly. One thing to the next and then the days done.
Thank you again for all your love and support.
Scarlett we love you...Monday, October 24, 2011
Scarlett had a good night but not such a good day. She barfed up her feeding tube, is having the runs and with very low levels she had to have a blood transfusion. She was pale and quite lethargic but after the transfusion she was eating quite good and looked better. Hoping for a good day tomorrow as she usually perks up after a transfusion. On we go...looking for better days but counting our blessings. (eg. I am so glad that they made it home to Canada!)
Sunday 23 October 2011
Sum it up... Sunday, Oct. 23, 2011
Well I have spent the last 3 days in Calgary and need to let you kind friends and family know about the Jarman's. It has already been said, but it is such a roller coaster. Overall we are making it through not just one day at a time but even hour by hour. Scarlett will be smiling and talking a bit and within an hour she may be crying softly to herself, throwing up or just showing signs of frutration. I can't imagine what her little mind is thinking.
I spent a lot of time with Isabelle, and Daylene has taken her to Brody's kindergarten a few times which she loves and it keeps her busy. I talked Bobbi and Lance into going out 'together' for a few hours Friday afternoon while I stayed with Scarlett and Daylene had Izzy at the zoo.
Chemo - this drug kills cancer cells but does not discern between them and normal cells. The goal is to kill all cells in the first month of treatment. This is phase 1. She will hopefully be in 99% remission in 30 days. But we have a lot of cells so there is still cancer left. This stage is very hard on her. Then they back off, do some testing and lessen the dosage. They say that a 2 1/2 year program should make her 100% free, where the cancer will not return. She has ALL, the most common kind, a good diagnosis.
Summary of Scarlett:
- heavy doses of chemotherapy with various, expected side effects (moodiness, pain, sickness)
- decrease of appetite (the reverse is supposed to happen) We are waiting for the increase.
- feeding tube at night but not in the day as they want her to eat (tube coming out of nose and taped to side of cheek -fun!?!?!)
- not wanting to walk or put weight on her legs -they have done tests and don't feel that anything else is wrong - doctors check her often - they kind of think that she did have pain in her legs, which started the whole thing, and is afraid to try. She feels pretty sick everywhere else so is maybe afraid to try her legs. They are hoping this will come but it will probably be a gradual thing. Hopefully even just watching Isabelle in the playroom will start her off.
- IV to keep her fluids up
- not having any other infections show up in testing
- she is a candidate to be low or medium low risk but they will not know that until after the 30 days of Chemo(phase 1) and then after testing (bone marrow and blood) - so about the end of November they will know her level by how she has responded to the treatment. Those results will tell them what to do next and what the 2nd phase will be and how long it will last. (how much medication, how many visits to the hospital, etc.) The 3rd phase is the lower maintenance level. That is all we know. More details on each phase as time and testing goes on.
To sum it up- when Scarlett is feeling a bit better or distracted, she is cute, funny and sweet as can be. When she is feeling sick, our hearts are breaking. Her good moments are scattered a bit throughout the day but far outnumbered, as of now, by the heartbreaking moments. This first month is a marathon!!
Bobbi and Lance are just immersed in it. Watching and waiting all day and all night. They take little time to think or talk of other things. This is all consuming. They express an overwhelming gratitude for all of the well wishes they get and for the ones they don't even hear about. They know that so many of you really care, pray for and love them. They are trying to take care of Isabelle and to support each other.
I spent a lot of time with Isabelle, and Daylene has taken her to Brody's kindergarten a few times which she loves and it keeps her busy. I talked Bobbi and Lance into going out 'together' for a few hours Friday afternoon while I stayed with Scarlett and Daylene had Izzy at the zoo.
Chemo - this drug kills cancer cells but does not discern between them and normal cells. The goal is to kill all cells in the first month of treatment. This is phase 1. She will hopefully be in 99% remission in 30 days. But we have a lot of cells so there is still cancer left. This stage is very hard on her. Then they back off, do some testing and lessen the dosage. They say that a 2 1/2 year program should make her 100% free, where the cancer will not return. She has ALL, the most common kind, a good diagnosis.
Summary of Scarlett:
- heavy doses of chemotherapy with various, expected side effects (moodiness, pain, sickness)
- decrease of appetite (the reverse is supposed to happen) We are waiting for the increase.
- feeding tube at night but not in the day as they want her to eat (tube coming out of nose and taped to side of cheek -fun!?!?!)
- not wanting to walk or put weight on her legs -they have done tests and don't feel that anything else is wrong - doctors check her often - they kind of think that she did have pain in her legs, which started the whole thing, and is afraid to try. She feels pretty sick everywhere else so is maybe afraid to try her legs. They are hoping this will come but it will probably be a gradual thing. Hopefully even just watching Isabelle in the playroom will start her off.
- IV to keep her fluids up
- not having any other infections show up in testing
- she is a candidate to be low or medium low risk but they will not know that until after the 30 days of Chemo(phase 1) and then after testing (bone marrow and blood) - so about the end of November they will know her level by how she has responded to the treatment. Those results will tell them what to do next and what the 2nd phase will be and how long it will last. (how much medication, how many visits to the hospital, etc.) The 3rd phase is the lower maintenance level. That is all we know. More details on each phase as time and testing goes on.
To sum it up- when Scarlett is feeling a bit better or distracted, she is cute, funny and sweet as can be. When she is feeling sick, our hearts are breaking. Her good moments are scattered a bit throughout the day but far outnumbered, as of now, by the heartbreaking moments. This first month is a marathon!!
Bobbi and Lance are just immersed in it. Watching and waiting all day and all night. They take little time to think or talk of other things. This is all consuming. They express an overwhelming gratitude for all of the well wishes they get and for the ones they don't even hear about. They know that so many of you really care, pray for and love them. They are trying to take care of Isabelle and to support each other.
Thursday 20 October 2011
NO PRICE...Thursday, Oct. 20, 2011
Well there is no price to set the value of Scarlett's smile when I came in to see her this morning or the feel of her little hand reaching almost halfway around my neck as she gave me a hug! Nope...can't put a price on that!! She looks so little in that big bed.
She did have some improvements today for sure. No fever! Keep fingers and toes crossed! And she had a bit of an appetite and ate a bit. She heard Isabelle and I talking about going down to eat some lunch and she whipped that thumb out of her mouth and said, "Me, too!!" And then she almost shouted, "Salad! Noodles! Ketchup! Chocolate milk!" We were all laughing/ crying. Laughing because it was so cute but crying inside because it was noon and she was still fasting for her medication which they put into her spinal cord with a short precedure. She was going in for that NOT for lunch. Poor thing! But she did wake up about an hour later and started munching away on her requests that we had brought in. Still no walking but we are hoping that will come soon. She does still seem to have pain in her legs and her jaw.
Ronald McDonald house is a miracle. I would love to meet the people who actually thought it up because everything about it is genious. Absolutely! Many things are available for them but they are also expected to pull their weight. The way it is designed it really encourages them to become a family with the others here. I asked Isabelle if she called this her bedroom, her apartment or her house. She said "My house, I will probably live here forever." It is really a home for these people.
Well I have got to go to bed! I am exhausted! I had to keep up with Isabelle on the purple playground, in the craft room, playing with the animal critters in the 'cool' hospital playroom, eating on the train in the dining room, playing 'go Fish' with Princess cards, going to the Mad Scientist Program (dry ice!) and reading stories! Yup it's a full day for me!
So nice for me to be here with them. We are all so grateful for our kind friends and family. A good day for Scarlett is a good day for us. :)
She did have some improvements today for sure. No fever! Keep fingers and toes crossed! And she had a bit of an appetite and ate a bit. She heard Isabelle and I talking about going down to eat some lunch and she whipped that thumb out of her mouth and said, "Me, too!!" And then she almost shouted, "Salad! Noodles! Ketchup! Chocolate milk!" We were all laughing/ crying. Laughing because it was so cute but crying inside because it was noon and she was still fasting for her medication which they put into her spinal cord with a short precedure. She was going in for that NOT for lunch. Poor thing! But she did wake up about an hour later and started munching away on her requests that we had brought in. Still no walking but we are hoping that will come soon. She does still seem to have pain in her legs and her jaw.
Ronald McDonald house is a miracle. I would love to meet the people who actually thought it up because everything about it is genious. Absolutely! Many things are available for them but they are also expected to pull their weight. The way it is designed it really encourages them to become a family with the others here. I asked Isabelle if she called this her bedroom, her apartment or her house. She said "My house, I will probably live here forever." It is really a home for these people.
Well I have got to go to bed! I am exhausted! I had to keep up with Isabelle on the purple playground, in the craft room, playing with the animal critters in the 'cool' hospital playroom, eating on the train in the dining room, playing 'go Fish' with Princess cards, going to the Mad Scientist Program (dry ice!) and reading stories! Yup it's a full day for me!
So nice for me to be here with them. We are all so grateful for our kind friends and family. A good day for Scarlett is a good day for us. :)
Wednesday 19 October 2011
Smelly Felts are Fun!
Here is a little Video of Isabelle and Scarlett playing with Smelly felts.
It was taken in the Philippines Hospital the day before we received her 95% Leukemia diagnosis and everything changed in an instant. Isabelle and I are laughing because of how Scarlett is saying "Not yet" she has a little Philippino accent. I miss seeing her like this. She is such a fun happy little girl. I love how she has little marks of felt on her nose from smelling them. This video makes me smile so I thought I'd share it with you. Enjoy.
It was taken in the Philippines Hospital the day before we received her 95% Leukemia diagnosis and everything changed in an instant. Isabelle and I are laughing because of how Scarlett is saying "Not yet" she has a little Philippino accent. I miss seeing her like this. She is such a fun happy little girl. I love how she has little marks of felt on her nose from smelling them. This video makes me smile so I thought I'd share it with you. Enjoy.
Dare to hope....
Hello everyone, this is Bobbi.
I am sitting here feeling extremely grateful and very overwhelmed at all the wonderful kind gestures and acts of service we have received. It has definitely caused me to evaluate myself. I honestly could only hope, actually I could only dare to hope that I would be as kind, generous, and thoughtful as all of you have been if the situation was reversed. It's unbelievable to me, how one sick little girl, could stir up such an out pouring of love towards our family. You are all so kind and selfless.
We have one friend who is dedicating his fund-raising for "The ride to conquer Cancer" to Scarletts name. Many others who have dropped off very thoughtful gifts, food and toys. Countless messages and notes of love, concern and thoughts. Endless offers to help with Isabelle or in anyway possible. I am speechless and truly feel like thank-you just isn't enough....it's doesn't cover how grateful we feel.
Please just know your kindness and support are what is helping get a through. We appreciate it all ~ everything ~ from the bottom of our hearts.
A little update on the princess today :
We had a positive morning. Her fever seemed to be gone, she ate a little breakfast, was happy and smiling. We also received a tid bit of positive news from the Dr. some of her bone Marrow Aspirate tests came back and they are showing she does have chromosomes 4 and 10. Which means she is eligible to be in the "very low risk" category. It still depends a lot on how her body responds to the Chemo and what her levels test like closer towards the end of the month. She could still potentially end up in the Moderate risk category however there is potential for her to be in the "low to very low" risk. So it was good news.
Things kind of took a turn this afternoon though. Her fever has returned, she's miserable and not eating. They have put us back on isolation because of some loose stools so we can't leave the room again. Waiting for stool sample results as well as blood culture results.....
Mom is coming up to help today. Lance and I are looking forward to a few minutes of alone time. Isabelle had her first day of Canadian kindergarten today. I am sad I wasn't able to be there to see her off but am very grateful for a wonderful cousin who was.
I am sitting here feeling extremely grateful and very overwhelmed at all the wonderful kind gestures and acts of service we have received. It has definitely caused me to evaluate myself. I honestly could only hope, actually I could only dare to hope that I would be as kind, generous, and thoughtful as all of you have been if the situation was reversed. It's unbelievable to me, how one sick little girl, could stir up such an out pouring of love towards our family. You are all so kind and selfless.
We have one friend who is dedicating his fund-raising for "The ride to conquer Cancer" to Scarletts name. Many others who have dropped off very thoughtful gifts, food and toys. Countless messages and notes of love, concern and thoughts. Endless offers to help with Isabelle or in anyway possible. I am speechless and truly feel like thank-you just isn't enough....it's doesn't cover how grateful we feel.
Please just know your kindness and support are what is helping get a through. We appreciate it all ~ everything ~ from the bottom of our hearts.
A little update on the princess today :
We had a positive morning. Her fever seemed to be gone, she ate a little breakfast, was happy and smiling. We also received a tid bit of positive news from the Dr. some of her bone Marrow Aspirate tests came back and they are showing she does have chromosomes 4 and 10. Which means she is eligible to be in the "very low risk" category. It still depends a lot on how her body responds to the Chemo and what her levels test like closer towards the end of the month. She could still potentially end up in the Moderate risk category however there is potential for her to be in the "low to very low" risk. So it was good news.
Things kind of took a turn this afternoon though. Her fever has returned, she's miserable and not eating. They have put us back on isolation because of some loose stools so we can't leave the room again. Waiting for stool sample results as well as blood culture results.....
Mom is coming up to help today. Lance and I are looking forward to a few minutes of alone time. Isabelle had her first day of Canadian kindergarten today. I am sad I wasn't able to be there to see her off but am very grateful for a wonderful cousin who was.
Ya! I get to go to Calgary today! Wednesday, Oct. 19,2011
Well, as of yesterday, there was not a lot of improvement in Scarlett. The fever comes and goes but they are still testing. X-rays happened yesterday but no results yet. Still not eating so she still has the feeding tube. Still not walking so concerns there. They were also expecting some feedback yesterday about the bone marrow testing last week. They did find out the type of leukemia but more results were supposed to be coming. Maybe today. They are trying to stabilize her so they can go "home" (which is Ronald McDonald house). They all want her to and generally it is good for everyone to not "live" at the hospital, but they won't send her unless they see improvements. Today is a "big" medication day - this may bring improved appetite, raise her platelett count, etc....or not.
They unhooked her feeding tube and IV for a little while yesterday and let her play in the playroom. She painted a picture and was in heaven! She asks Bobbi for her coat so they can go outside. I am so excited to go and spend a few days with them. Hoping to give Bobbi and Lance a little break and play with my little girls. I will update tonight on Bobbi's laptop. (if someone shows me how to use it...:)
Once again, everyone's prayers and concerns are so appreciated. We all feel of your love and your care.
They unhooked her feeding tube and IV for a little while yesterday and let her play in the playroom. She painted a picture and was in heaven! She asks Bobbi for her coat so they can go outside. I am so excited to go and spend a few days with them. Hoping to give Bobbi and Lance a little break and play with my little girls. I will update tonight on Bobbi's laptop. (if someone shows me how to use it...:)
Once again, everyone's prayers and concerns are so appreciated. We all feel of your love and your care.
Tuesday 18 October 2011
Tuesday Morning Update...
Yesterday afternoon they decided to put a feeding tube in her nose. Her weight has been dropping rapidly and she's still refusing to eat. She hates the feeding tube as it comes out her nose and is taped to the side of her cheek. However, we feel better knowing she's getting some sort of nutrition. One problem with the tube is that it goes directly into her stomach, this poses a danger of her throwing it up and having to have it re-installed (NOT a fun Process). She did throw up during the night but luckily the tube stayed down. They are trying to keep the vomiting under control with gravol to help keep the feeding tube down.
Last night they did give her a blood transfusion as her Hemo levels were very low.
Her fever is still very high and they can't seem to find the cause of it. If it hasn't broken by tomorrow they are going to have to start looking for a fungus infection as viral and bacterial will be ruled out. In order to do that she will need a stomach ultrasound and X-rays of the sinuses and chest.
Her walking is still non existent and they are going to do a hip, knee, and ankle X-rays today. They are very sure it's just the Leukemia in her bones causing her the pain but they want to make sure it's not something else.
This morning she will have a pure Platelet transfusion as her platelets were at 13 this morning. Normal is between 100-150.
Like we said before it seems to be one thing after another. We are doing ok, just taking it hour by hour. It's very hard to see her like this.
She really perked up this morning when Isabelle came in. She sure loves her big sister.
Isabelle is doing ok. She went to play at this play place here in the hospital this morning called Emily's Backyard. When I picked her up I asked her if she had fun and if she made any new friends? She replied : Oh ya I had so much fun! I asked a few kids to be friends, some said yes, but then I think they forgot so I just did some crafts" Still our funny little girl. We sure love her and are glad she is with us during this time. She helps keep everyone spirits up with her smile and little sayings.
Thanks again for all your love and support.
Last night they did give her a blood transfusion as her Hemo levels were very low.
Her fever is still very high and they can't seem to find the cause of it. If it hasn't broken by tomorrow they are going to have to start looking for a fungus infection as viral and bacterial will be ruled out. In order to do that she will need a stomach ultrasound and X-rays of the sinuses and chest.
Her walking is still non existent and they are going to do a hip, knee, and ankle X-rays today. They are very sure it's just the Leukemia in her bones causing her the pain but they want to make sure it's not something else.
This morning she will have a pure Platelet transfusion as her platelets were at 13 this morning. Normal is between 100-150.
Like we said before it seems to be one thing after another. We are doing ok, just taking it hour by hour. It's very hard to see her like this.
She really perked up this morning when Isabelle came in. She sure loves her big sister.
Isabelle is doing ok. She went to play at this play place here in the hospital this morning called Emily's Backyard. When I picked her up I asked her if she had fun and if she made any new friends? She replied : Oh ya I had so much fun! I asked a few kids to be friends, some said yes, but then I think they forgot so I just did some crafts" Still our funny little girl. We sure love her and are glad she is with us during this time. She helps keep everyone spirits up with her smile and little sayings.
Thanks again for all your love and support.
Monday 17 October 2011
Family and Friends
Hello all our wonderful family and friends. This is Bobbi writing.
Just a few quick things, first an update on this mornings events. Scarlett's fever started back up again. They aren't sure if it's a virus or a bacteria infection. They are still treating her with Antibiotics and hopefully it'll start to clear up soon. She is in quite a bit of pain and they just gave her a dose of morphine. Her jaw is very sore as a result of one of the chemo medicines, they think the sore jaw may be one, of may, reasons she's not eating. Also her blood work levels came back very low - they may give her a blood transfusion later today.
To look at her today, physically, she looks the sickest I have ever seen her. She has big dark circles under her eyes, her lips and skin have no color. She looks thin and frail. It's incredibly hard watching her get sicker and sicker. It's like they have to really knock her down in order to kill the cancer. Everyday she seems to get worse. I am so thankful I have Lance by my side through this. We are holding on together.
Second, we have received a flood of e-mails from so many people offering to help. Wanting to just do something. Last night I thought of something Scarlett will need....It's hard for us to ask people for things....... but we thought this would be an easy thing for you guys to help us out with if you wanted.
Scarlett has not lived in Canada for a winter since she was born and the weather seems to be extremely cold here for us beach bunnys. One of the things the Chemo does is it suppresses her immune system so it can effectively knock out the Cancer. With her immune system so low, we have to be extra careful not to expose her to any types of infections because something as simple as a cold could really become life threatening at this point. Also, very soon Scarlett will start loosing her hair.
As a result of these things Scarlett is going to need some toques, hats, and scarfs. She has a fairly big head it's 20" around. I thought these things would be fairly light and small if mailed. Also, for those of you in the Lethbridge area you could drop one off at my moms. PLEASE don't feel any type of obligation. It was just a thought.....
We can't thank you enough for everything that has been done for our little family. All the thoughts, gifts, prayers, food and kind messages.
If you would like to mail a little hat for Scarlett, my sister lives in Okotoks and can receive the mail and drop them off at the hospital for Scarlett.
Angi Gardner
c/o Scarlett Jarman
#95-105 Drake Landing Common
Okotoks, AB
T1S 0C9
Just a few quick things, first an update on this mornings events. Scarlett's fever started back up again. They aren't sure if it's a virus or a bacteria infection. They are still treating her with Antibiotics and hopefully it'll start to clear up soon. She is in quite a bit of pain and they just gave her a dose of morphine. Her jaw is very sore as a result of one of the chemo medicines, they think the sore jaw may be one, of may, reasons she's not eating. Also her blood work levels came back very low - they may give her a blood transfusion later today.
To look at her today, physically, she looks the sickest I have ever seen her. She has big dark circles under her eyes, her lips and skin have no color. She looks thin and frail. It's incredibly hard watching her get sicker and sicker. It's like they have to really knock her down in order to kill the cancer. Everyday she seems to get worse. I am so thankful I have Lance by my side through this. We are holding on together.
Second, we have received a flood of e-mails from so many people offering to help. Wanting to just do something. Last night I thought of something Scarlett will need....It's hard for us to ask people for things....... but we thought this would be an easy thing for you guys to help us out with if you wanted.
Scarlett has not lived in Canada for a winter since she was born and the weather seems to be extremely cold here for us beach bunnys. One of the things the Chemo does is it suppresses her immune system so it can effectively knock out the Cancer. With her immune system so low, we have to be extra careful not to expose her to any types of infections because something as simple as a cold could really become life threatening at this point. Also, very soon Scarlett will start loosing her hair.
As a result of these things Scarlett is going to need some toques, hats, and scarfs. She has a fairly big head it's 20" around. I thought these things would be fairly light and small if mailed. Also, for those of you in the Lethbridge area you could drop one off at my moms. PLEASE don't feel any type of obligation. It was just a thought.....
We can't thank you enough for everything that has been done for our little family. All the thoughts, gifts, prayers, food and kind messages.
If you would like to mail a little hat for Scarlett, my sister lives in Okotoks and can receive the mail and drop them off at the hospital for Scarlett.
Angi Gardner
c/o Scarlett Jarman
#95-105 Drake Landing Common
Okotoks, AB
T1S 0C9
Sunday 16 October 2011
So Busy!...Sunday, October16, 2011
Scarlett's fever is gone but of course they have had her on megadoses of antibiotic. They are still waiting for results from those blood tests. Bobbi was telling me today about the medications that Scarlett is on. She takes soooo many. And they all have assorted reactions and side effects. One makes her moody, one makes her jaws ache, one of her common ones will change how she looks, etc. She takes one kind 3 times a day, every day. Another one is 3 times a day but only 3 times a week. Another one is one day a week, another is day 1, day 14 and day 28. (by the way, I am not at all sure that I have got it right or that I have included them all - I was losing count as Bobbi was telling me) The one she got today is a one-time drug but very strong. She cried a lot and seemed to be in a lot of pain. A few days ago she was eating and it was not such a big deal to give out all of these medications. They were easily hidden in apple juice, chocolate pudding, etc. Now she has absolutely no appetite, so they have been having to just shove these medicines down her throat, several times a day. And she is not liking it!! One is supposed to increase her appetite but they have not seen that yet - in fact the very opposite is happening.
Bobbi and Lance are so busy!! Everything takes so long, just to take her to the bathroom with all of the tubes and hook-ups is a major deal. Plus there are people coming in all day. With the medicine she took today the kids can have very serious reactions so they were taking her blood pressure constantly, checking for rashes, etc. There is just very little down time. Bobbi expressed frustration not being able to respond to everyone. They are so grateful for all of your kind thoughts and she wishes she could answer and respond but they just physically can not do it. I usually only get a few minutes of their time each day and then they need to go. Please know that they are very appreciative, almost overwhelmed by everyone's kindness.
Bobbi decided to talk to Scarlett about what was happening. She asked her questions like- Do you know where we are? Are we in the Philippines? Are we at Grandma's? Are we at our house? (which is a funny question because right now they don't really have a house) Then Bobbi explained the hospital and how her legs hurt and all the doctors want to make them better. So Bobbi told her she had been a good girl to let them do all of these things to her. She pointed to her central line in her chest and told her how she got that so she would not have to get poked so much in her arms. And Scarlett perks up and says, "I cwy reawy hard." Bobbi says "ya you did cry really hard". Scarlett says "No more cwy reawy hard."
Bobbi and Lance are so busy!! Everything takes so long, just to take her to the bathroom with all of the tubes and hook-ups is a major deal. Plus there are people coming in all day. With the medicine she took today the kids can have very serious reactions so they were taking her blood pressure constantly, checking for rashes, etc. There is just very little down time. Bobbi expressed frustration not being able to respond to everyone. They are so grateful for all of your kind thoughts and she wishes she could answer and respond but they just physically can not do it. I usually only get a few minutes of their time each day and then they need to go. Please know that they are very appreciative, almost overwhelmed by everyone's kindness.
Bobbi decided to talk to Scarlett about what was happening. She asked her questions like- Do you know where we are? Are we in the Philippines? Are we at Grandma's? Are we at our house? (which is a funny question because right now they don't really have a house) Then Bobbi explained the hospital and how her legs hurt and all the doctors want to make them better. So Bobbi told her she had been a good girl to let them do all of these things to her. She pointed to her central line in her chest and told her how she got that so she would not have to get poked so much in her arms. And Scarlett perks up and says, "I cwy reawy hard." Bobbi says "ya you did cry really hard". Scarlett says "No more cwy reawy hard."
Saturday 15 October 2011
Not feeling so good today...Saturday, October 15, 2011
Wow the blog looks great! It is fairly obvious that Bobbi did not inherit her blogging skills from me. Well I should phrase that differently - It is obvious that I have no blogging skills to inherit. I guess I will take some lessons from her this week when I go to Calgary. Thanks for fixing it up, sweetie, I tried, I really did. Anyway back to my plain blogging page for now.
Scarlett is not so great today. She has quite a fever and her platelett level and her white blood count are both the lowest they have been yet. She is not sleeping well and not eating much. They are concerned about a possible infection. A lot of people in and out all day, which is good because they are really watching that little girl and doing their best to help her.
She is still not walking and will not put any weight on her legs. They are also watching her very closely and trying to do stretches and exercises with her.
There is a bit of a messup going on right now with cancer drugs. One that Scarlett has to take should be in liquid form but is not available. It comes in a big tablet which they are crushing and trying to disguise in various foods and drinks so that she will take it.
Bobbi has only had a few hours of sleep at a time for the last 2 weeks. She finally left Scarlett's side last night for the first time and slept with Isabelle in the Ronald McDonald house. She slept soundly for 12 hours and then Isabelle woke her up. Lance spent a rough night with Scarlett.
Just one challenge after another. The days and nights are long, busy and tense. They are still so grateful for the wonderful hospital staff and for Ronald McDonald house. We are so glad that she is there. We are all so appreciative for everyone's love and prayers. Thank you from the Jarman's and the Byam's.
Scarlett is not so great today. She has quite a fever and her platelett level and her white blood count are both the lowest they have been yet. She is not sleeping well and not eating much. They are concerned about a possible infection. A lot of people in and out all day, which is good because they are really watching that little girl and doing their best to help her.
She is still not walking and will not put any weight on her legs. They are also watching her very closely and trying to do stretches and exercises with her.
There is a bit of a messup going on right now with cancer drugs. One that Scarlett has to take should be in liquid form but is not available. It comes in a big tablet which they are crushing and trying to disguise in various foods and drinks so that she will take it.
Bobbi has only had a few hours of sleep at a time for the last 2 weeks. She finally left Scarlett's side last night for the first time and slept with Isabelle in the Ronald McDonald house. She slept soundly for 12 hours and then Isabelle woke her up. Lance spent a rough night with Scarlett.
Just one challenge after another. The days and nights are long, busy and tense. They are still so grateful for the wonderful hospital staff and for Ronald McDonald house. We are so glad that she is there. We are all so appreciative for everyone's love and prayers. Thank you from the Jarman's and the Byam's.
From Us to You.....
This is Bobbi and Lance posting this......
Well this last month has been extremely intense and very stressful for our little family. We have been pushed to our limits both physically and emotionally. The diagnosis of Leukemia really hit's you like a rock....like a brick wall. It feels like a nightmare that just won't end. She is way to small and young to have to be going through this. The love a parent has for a child is so very deep. We have never felt so much heart ache and sorrow in our life nor could we begin to imagine it. The way it feels, as a parent, to watch your child suffer and be so completely helpless is agonizing....we have never felt so helpless before.
We both wish so badly it was us going through it and not her. Not our sweet little 2 1/2 year old baby girl. "Why her? Why not me? What did she ever do to deserve this?" are questions we are constantly asking ourselves.
It seems so unbelievably unfair for us to have to sit by the bed, in perfect health, and watch our little Scarlett fight for her life. It's a gut wrenching feeling that we sincerely hope no parent ever has to feel.
Going through this day by day....all the heart ache, the tears, the tests, the results, the pain we have never felt alone. We feel so much support, care, love and concern from so many people. We can't begin to explain how it feels just to know everyones thinking about and praying for Scarlett. We, as parents, are giving her everything we can...all our energy, time, and love. Very often we feel it's just not enough, we wish we could give her more. At those moments, it's incredibly comforting to know that there are so many people out there, sending all their thoughts of love and care and support her way. It's extremely over whelming for Lance and I...all the gifts, messages, phone calls, notes and offers of help in any way at all. We have been showered with them, and we are so grateful to be surrounded by such wonderful friends and family who would clearly do anything for our little girl.
Scarlett is a strong girl. We are very hopeful that with our strength, love and support added to all of yours she will be able to pull through this trial, beat this Cancer, and see the sunshine on the other side. We have no doubt that we would never be able to make it through this alone. Thank you all for everything positive you have, can and will send our way. Like I said, we would never be able to make it through this without you.
Well this last month has been extremely intense and very stressful for our little family. We have been pushed to our limits both physically and emotionally. The diagnosis of Leukemia really hit's you like a rock....like a brick wall. It feels like a nightmare that just won't end. She is way to small and young to have to be going through this. The love a parent has for a child is so very deep. We have never felt so much heart ache and sorrow in our life nor could we begin to imagine it. The way it feels, as a parent, to watch your child suffer and be so completely helpless is agonizing....we have never felt so helpless before.
We both wish so badly it was us going through it and not her. Not our sweet little 2 1/2 year old baby girl. "Why her? Why not me? What did she ever do to deserve this?" are questions we are constantly asking ourselves.
It seems so unbelievably unfair for us to have to sit by the bed, in perfect health, and watch our little Scarlett fight for her life. It's a gut wrenching feeling that we sincerely hope no parent ever has to feel.
Going through this day by day....all the heart ache, the tears, the tests, the results, the pain we have never felt alone. We feel so much support, care, love and concern from so many people. We can't begin to explain how it feels just to know everyones thinking about and praying for Scarlett. We, as parents, are giving her everything we can...all our energy, time, and love. Very often we feel it's just not enough, we wish we could give her more. At those moments, it's incredibly comforting to know that there are so many people out there, sending all their thoughts of love and care and support her way. It's extremely over whelming for Lance and I...all the gifts, messages, phone calls, notes and offers of help in any way at all. We have been showered with them, and we are so grateful to be surrounded by such wonderful friends and family who would clearly do anything for our little girl.
Scarlett is a strong girl. We are very hopeful that with our strength, love and support added to all of yours she will be able to pull through this trial, beat this Cancer, and see the sunshine on the other side. We have no doubt that we would never be able to make it through this alone. Thank you all for everything positive you have, can and will send our way. Like I said, we would never be able to make it through this without you.
My Beaded Journey
The Children's Hospital in Calgary is such a wonderful place to be. There are so many people here that really want to help. They have so many programs set up....something for everything and more. One of the programs we were approached with is called "My Beaded Journey" It is a way to honour and tell the story of Scarlett treatment path through different color beads placed on a rope. Beads of different shapes and colors stand for the many important points, both medical and non medical, along her treatment path. Basically the kids get long piece of twine with there name in beads. Then the receive a diagnosis bead (obviously Scarlett got a Leukemia Bead) and then they receive a different bead for every procedure they have to go through along the way.
Eg:
Black Bead = Poke
Green Bead = Dressing Change
Red Bead = Blood Transfusion
Purple = Lumbar Puncture, Bone marrow aspirate/biopsy
Orange Bead = Tube Placement
Yellow Bead = Tests/Scans
Brown Bead = Hair Loss
Cream Bead = Chemotherapy
Etc, etc, etc.....There are lot's of them.
In the end, once the child is in full remission they have this wonderful length of beads to show all the different steps they went through. It's a great little craft for the kids to do...It was nice for me because it was an easy way for me to explain things visually to Isabelle to help her better understand what Scarlett is going through daily. The Nurses said many of the older kids will take there beads to school for show and tell and explain what each color represents.
Here is a picture of how Scarletts "Beaded Journey" Looks so far......
Eg:
Black Bead = Poke
Green Bead = Dressing Change
Red Bead = Blood Transfusion
Purple = Lumbar Puncture, Bone marrow aspirate/biopsy
Orange Bead = Tube Placement
Yellow Bead = Tests/Scans
Brown Bead = Hair Loss
Cream Bead = Chemotherapy
Etc, etc, etc.....There are lot's of them.
In the end, once the child is in full remission they have this wonderful length of beads to show all the different steps they went through. It's a great little craft for the kids to do...It was nice for me because it was an easy way for me to explain things visually to Isabelle to help her better understand what Scarlett is going through daily. The Nurses said many of the older kids will take there beads to school for show and tell and explain what each color represents.
Here is a picture of how Scarletts "Beaded Journey" Looks so far......
Friday 14 October 2011
Another day...
Friday, October 14, 2011
Not a lot to report today as I only spoke to Bobbi for a few minutes before being interrupted. Sometimes I want to call them back but I do not want to disturb them if they are finally catching a few minutes of sleep. There is not a lot to write - not because lots did not happen but because it mostly has to do with stool softening medication, rubber gloves, quarentine, Scarlett's discomfort and parents' coping. Another day...
The journey is long but they are working through it together. I love that little Jarman family so much. I know many of you do too. Lance's family have spent a lot of time with Isabelle this week. They leave tomorrow I think and then I will take a turn in a few days. They are in need of prayers and so appreciate all of you.
I have thought about poor little Scarlett as she deals with this challenge. Her parents, extended family and friends ache as we watch her go through it. As we talk to people and the older Barry and I get we see lots of people around us who face struggles and trials of many different kinds with their own families. Sometimes it is hard to see bad things happen to good people. I found this poem that I learned to love years ago. It is from a book of a mother's story about her child. He faces many physical challenges and despite uneven odds and persecution, determines to make something of his life. I hope you don't mind me sharing - I guess I am feeling in a reflective mood tonight.
The Monument
God, before he sent his children to earth
Gave each of them
a very carefully selected package
of problems.
These, he promised smiling,
are yours alone. No one
else may have the blessings
these problems will bring you.
And only you
have the special talents and abilities
that will be needed
to make these problems
Your servants.
Now go down to your birth
and to your forgetfulness. Know that
I love you beyond measure.
These problems that I give you
are a symbol of that love.
The monument you make of your life
with the help of your problems
will be a symbol of your
Love for me.
Your Father.
Not a lot to report today as I only spoke to Bobbi for a few minutes before being interrupted. Sometimes I want to call them back but I do not want to disturb them if they are finally catching a few minutes of sleep. There is not a lot to write - not because lots did not happen but because it mostly has to do with stool softening medication, rubber gloves, quarentine, Scarlett's discomfort and parents' coping. Another day...
The journey is long but they are working through it together. I love that little Jarman family so much. I know many of you do too. Lance's family have spent a lot of time with Isabelle this week. They leave tomorrow I think and then I will take a turn in a few days. They are in need of prayers and so appreciate all of you.
I have thought about poor little Scarlett as she deals with this challenge. Her parents, extended family and friends ache as we watch her go through it. As we talk to people and the older Barry and I get we see lots of people around us who face struggles and trials of many different kinds with their own families. Sometimes it is hard to see bad things happen to good people. I found this poem that I learned to love years ago. It is from a book of a mother's story about her child. He faces many physical challenges and despite uneven odds and persecution, determines to make something of his life. I hope you don't mind me sharing - I guess I am feeling in a reflective mood tonight.
The Monument
God, before he sent his children to earth
Gave each of them
a very carefully selected package
of problems.
These, he promised smiling,
are yours alone. No one
else may have the blessings
these problems will bring you.
And only you
have the special talents and abilities
that will be needed
to make these problems
Your servants.
Now go down to your birth
and to your forgetfulness. Know that
I love you beyond measure.
These problems that I give you
are a symbol of that love.
The monument you make of your life
with the help of your problems
will be a symbol of your
Love for me.
Your Father.
Thursday 13 October 2011
Today is the 1st day
Thursday, October 13, 2011 First day of Treatment
Today Scarlett will have her first chemotherapy treatment. They are nervous but excited to get going - the old theory - the sooner we get this started the sooner we get this over with. They got a good enough sample from her hip to have confirmation of the type of leukemia that she has. They had to take from both hips and they also took bone fragments. Scarlett really struggled coming out of the anesthetic today but she had been under Monday, Tuesday and Thursday. That is more than I would care to be out and she is only 2. Next Monday and Tuesday will give them more results and then over the next 2-3 weeks they will learn more as they see how she reacts to treatment.
The type of Leukemia Scarlett has been diagnosed with is called "Acute Lymphoblastic Leukemia" or ALL. 85% of kids within the ages of 2-5 get this type of Leukemia. That is a good thing because it means they treat it more often than the other type. Within her type (ALL) there are different levels of risk or severity. We have yet to find out exactly what her level is - low, moderate, high or very high. Only time and more tests will show us that information. One thing we do know is that the treatment will last for about 2 1/2 years. It will be a combination of in hospital, outpatient, and eventually - at home.
Lance's mom and sister will be there for a few more days, mostly spending time with Isabelle. They are totally realizing that this is a 24-7 task with a roller coaster of tests, results, side effects, emotions, consults, surprises (good and bad) and sleepless days and nights. As I was talking to Bobbi a few minutes ago, Isabelle came in with Mary and Orenda (Lance's sister and mom) and Scarlett sat right up and said, "Hey Iz, you look big!" That sweet girl will continue to steal hearts as she has done in her 2 short years as she travels this journey.
Once again, we are all grateful for love, care and concern from family and friends. As my Gr Gr Grandmother said in her journal, There will be sunshine after rain.
Today Scarlett will have her first chemotherapy treatment. They are nervous but excited to get going - the old theory - the sooner we get this started the sooner we get this over with. They got a good enough sample from her hip to have confirmation of the type of leukemia that she has. They had to take from both hips and they also took bone fragments. Scarlett really struggled coming out of the anesthetic today but she had been under Monday, Tuesday and Thursday. That is more than I would care to be out and she is only 2. Next Monday and Tuesday will give them more results and then over the next 2-3 weeks they will learn more as they see how she reacts to treatment.
The type of Leukemia Scarlett has been diagnosed with is called "Acute Lymphoblastic Leukemia" or ALL. 85% of kids within the ages of 2-5 get this type of Leukemia. That is a good thing because it means they treat it more often than the other type. Within her type (ALL) there are different levels of risk or severity. We have yet to find out exactly what her level is - low, moderate, high or very high. Only time and more tests will show us that information. One thing we do know is that the treatment will last for about 2 1/2 years. It will be a combination of in hospital, outpatient, and eventually - at home.
Lance's mom and sister will be there for a few more days, mostly spending time with Isabelle. They are totally realizing that this is a 24-7 task with a roller coaster of tests, results, side effects, emotions, consults, surprises (good and bad) and sleepless days and nights. As I was talking to Bobbi a few minutes ago, Isabelle came in with Mary and Orenda (Lance's sister and mom) and Scarlett sat right up and said, "Hey Iz, you look big!" That sweet girl will continue to steal hearts as she has done in her 2 short years as she travels this journey.
Once again, we are all grateful for love, care and concern from family and friends. As my Gr Gr Grandmother said in her journal, There will be sunshine after rain.
Wednesday 12 October 2011
Wednesday, October 12, 2011 Roll over and do the other side!
www.scarlettjarman.blogspot.com
I talked to Bobbi earlier today. They are doing ok. Scarlett was in a lot of pain after her bone marrow sample but her oxygen levels were up. Then they came in and told them that the sample was diluted so they will redo it tomorrow but this time they will do both hips instead of just 1! They are also going to take a fragment sample out of both hips which they did not do yesterday either. They hope to do it earlier than usual so they can get some result that they are looking for by the afternoon and start chemo maybe even tomorrow. Thankfully, there was no cancer in the spinal fluid so that means no cancer going to the brain. So it was a 'good news/bad news' kind of a day.
Physiotherapists are working with Scarlett to keep exercising her muscles. They are, of course, very hopeful that she will walk again but they need to keep her limbs moving. Bobbi said that they are amazed at all of the people involved. She said that every question they have they send a "lady" to talk to them and answer their questions. She said there is a "lady" for everything!
Scarlett is receiving a colored "bead" for each event/milestone that happens. One for the Leukemia diagnosis, etc. I think she should get at least 3 for the bone marrow test! Anyway, by the end she has this chain of beads that tells her story. Bobbi said that it is actually very cool. Maybe when I go up I will get a picture to insert. (that would be a miracle if I could learn to do that)
They are so grateful for all of the love and support out there. They wish they could answer all of the messages from everyone. They just still feel very drained and need to have energy left for each other and their girls. I really only talk to her once or twice a day and we are often cut short by a visit to the room from a doctor, etc. Thank you for all the calls and care that we have all received. This is quite the journey. We are so grateful for the hope and perspective that the Gospel brings.
I talked to Bobbi earlier today. They are doing ok. Scarlett was in a lot of pain after her bone marrow sample but her oxygen levels were up. Then they came in and told them that the sample was diluted so they will redo it tomorrow but this time they will do both hips instead of just 1! They are also going to take a fragment sample out of both hips which they did not do yesterday either. They hope to do it earlier than usual so they can get some result that they are looking for by the afternoon and start chemo maybe even tomorrow. Thankfully, there was no cancer in the spinal fluid so that means no cancer going to the brain. So it was a 'good news/bad news' kind of a day.
Physiotherapists are working with Scarlett to keep exercising her muscles. They are, of course, very hopeful that she will walk again but they need to keep her limbs moving. Bobbi said that they are amazed at all of the people involved. She said that every question they have they send a "lady" to talk to them and answer their questions. She said there is a "lady" for everything!
Scarlett is receiving a colored "bead" for each event/milestone that happens. One for the Leukemia diagnosis, etc. I think she should get at least 3 for the bone marrow test! Anyway, by the end she has this chain of beads that tells her story. Bobbi said that it is actually very cool. Maybe when I go up I will get a picture to insert. (that would be a miracle if I could learn to do that)
They are so grateful for all of the love and support out there. They wish they could answer all of the messages from everyone. They just still feel very drained and need to have energy left for each other and their girls. I really only talk to her once or twice a day and we are often cut short by a visit to the room from a doctor, etc. Thank you for all the calls and care that we have all received. This is quite the journey. We are so grateful for the hope and perspective that the Gospel brings.
Scarlett Jarman's Leukemia Story
The story so far...
Scarlett had been limping slightly for about 2 weeks. They thought maybe she was bothered by some misquitoe bites that she had been scratching. She also fell and they thought maybe she hurt her knee. They wondered, but she did not act like she was in pain.
Sunday, Oct 2 she could not stand up at all so they took her in for blood tests. The doctor phoned them right back to say that her platelettes were very low and to come right in. Jarman's phoned us at this point which was our Sunday night at 10:30 - their Monday afternoon. They first said possibly a bone infection, then maybe just an infection from the misquito bites. But 2 days later her platelette count had dropped so much that the doctor said bone marrow for sure. More tests and the doctor said 95% sure of Leukemia.
By now we were all saying get her home to Canada. Lance's work started immediately on flights. Her count kept dropping so they gave her a transfusion (Lance has same blood type) so that she could make the 2 day flight. They were supposed to spend Wed night in Vancouver because all the connecting flights were full but they had a great tail wind and landed an hour early in Vancouver and ran and caught a flight to Calgary. A really great blessing, because of their concern it would have been hard to spend the night there with only a 1 hour flight between them and Calgary. They phoned and let us know and we took off. They even beat us there by a few minutes. They were so happy to be back in the country. We spent till 4 a.m. at the hospital with them and by 5 the next afternoon they had concluded that it was leukemia for sure.
We picked up Adam at the airport as he was flying in because Nikki was reporting her mission on Sunday. The weekend was very difficult and joyful to say the least. They are thrilled with the facility and the staff who have kept them constantly updated and are watching little Scarly-Marly very closely.
Monday she had surgery to put in a line of some sort (sorry I am forgetting the true medical word) by her heart to take blood etc. so they don't have to keep poking her little arms, which are already pretty beat up.
Today, Tuesday, they took a bone marrow sample and a spinal tap and injected her first dose of chemo. More tests and more results to wait for. She starts her full treatment on Friday. The doctor spoke to them for about an hour and a half today about all of the side effects and symptoms to watch for.
It seems that every day there are new things to learn and look for and new concerns. Her oxygen is low so they think maybe a lung collapsed in surgery on Monday, which is not uncommon, but she has not woken up enough for them to get her to do some deep breathing. Just so many things going on.
The Jarman family has been there this week so I will probably not go up again for a few days. They live farther away and won't be there as often as I can go. Bobbi and Lance are exhausted and Isabelle is confused. They would never want to offend anyone, but have asked for no visitors for awhile for a few reasons. First, once she starts chemo, the staff said that they will be very strict about limiting the visitors because they just can not have any of them get sick at all. And secondly, Bobbi and Lance need to be strong for Scarlett and Isabelle and they feel quite drained with too many other things going on. Plus they have medical staff coming in very often to speak with them about a variety of things. They are not sleeping well at all either. It is just ongoing and exhausting.
They are so grateful for 2 things. First of all, she says that she knows what is happening in Southern Alberta. She said, "Mom I know what people are doing and it brings us a lot of peace and comfort. I know they care for you guys and for us and that they are praying and thinking of us. It really means a lot and please thank everyone."
They are also so humbled to be staying in the Ronald McDonald House. It is fabulous and caters exactly to what families in their situation need. Meals, activities for kids, nice quiet rooms with washer and dryer and just across the street. They are allowed to stay there as long as they want. So far neither one of them has hardly even left her room but after Jarman's leave, one of them will stay there with Izzy at night.
We have a deep comforting hope that all will be well. Not easy - but well in the end. Thank you, thank you - we feel of your love and support.
I will try to add a bit each day after I talk with her. www.scarlettjarman.blogspot.com
Sunday, Oct 2 she could not stand up at all so they took her in for blood tests. The doctor phoned them right back to say that her platelettes were very low and to come right in. Jarman's phoned us at this point which was our Sunday night at 10:30 - their Monday afternoon. They first said possibly a bone infection, then maybe just an infection from the misquito bites. But 2 days later her platelette count had dropped so much that the doctor said bone marrow for sure. More tests and the doctor said 95% sure of Leukemia.
By now we were all saying get her home to Canada. Lance's work started immediately on flights. Her count kept dropping so they gave her a transfusion (Lance has same blood type) so that she could make the 2 day flight. They were supposed to spend Wed night in Vancouver because all the connecting flights were full but they had a great tail wind and landed an hour early in Vancouver and ran and caught a flight to Calgary. A really great blessing, because of their concern it would have been hard to spend the night there with only a 1 hour flight between them and Calgary. They phoned and let us know and we took off. They even beat us there by a few minutes. They were so happy to be back in the country. We spent till 4 a.m. at the hospital with them and by 5 the next afternoon they had concluded that it was leukemia for sure.
We picked up Adam at the airport as he was flying in because Nikki was reporting her mission on Sunday. The weekend was very difficult and joyful to say the least. They are thrilled with the facility and the staff who have kept them constantly updated and are watching little Scarly-Marly very closely.
Monday she had surgery to put in a line of some sort (sorry I am forgetting the true medical word) by her heart to take blood etc. so they don't have to keep poking her little arms, which are already pretty beat up.
Today, Tuesday, they took a bone marrow sample and a spinal tap and injected her first dose of chemo. More tests and more results to wait for. She starts her full treatment on Friday. The doctor spoke to them for about an hour and a half today about all of the side effects and symptoms to watch for.
It seems that every day there are new things to learn and look for and new concerns. Her oxygen is low so they think maybe a lung collapsed in surgery on Monday, which is not uncommon, but she has not woken up enough for them to get her to do some deep breathing. Just so many things going on.
The Jarman family has been there this week so I will probably not go up again for a few days. They live farther away and won't be there as often as I can go. Bobbi and Lance are exhausted and Isabelle is confused. They would never want to offend anyone, but have asked for no visitors for awhile for a few reasons. First, once she starts chemo, the staff said that they will be very strict about limiting the visitors because they just can not have any of them get sick at all. And secondly, Bobbi and Lance need to be strong for Scarlett and Isabelle and they feel quite drained with too many other things going on. Plus they have medical staff coming in very often to speak with them about a variety of things. They are not sleeping well at all either. It is just ongoing and exhausting.
They are so grateful for 2 things. First of all, she says that she knows what is happening in Southern Alberta. She said, "Mom I know what people are doing and it brings us a lot of peace and comfort. I know they care for you guys and for us and that they are praying and thinking of us. It really means a lot and please thank everyone."
They are also so humbled to be staying in the Ronald McDonald House. It is fabulous and caters exactly to what families in their situation need. Meals, activities for kids, nice quiet rooms with washer and dryer and just across the street. They are allowed to stay there as long as they want. So far neither one of them has hardly even left her room but after Jarman's leave, one of them will stay there with Izzy at night.
We have a deep comforting hope that all will be well. Not easy - but well in the end. Thank you, thank you - we feel of your love and support.
I will try to add a bit each day after I talk with her. www.scarlettjarman.blogspot.com
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