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.

 

 

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

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.

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!

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.

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.

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.

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.

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.

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!)

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.

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.  :)

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.

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.