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.
Sunday 30 October 2011
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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