Plugging Along!

Hello Everyone!

Its Bobbi here. Sorry it's been so long since I've posted but we have been so busy with the move and keeping up on Scarletts treatments. The days seem to just slip by so quickly. Thanks to my mom for doing such a great job keeping the blog updated.

We are so happy that Scarlett is in Remission! Our anniversary was definitely a wonderful day. Such great news. We are so proud of Scarlett for being such a fighter. Her body is responding so well to the Chemo. Up to this point, we couldn't ask for anything better, as far as results go. She has had so few complications in comparison to what can potentially happen. We are very lucky.

I am just going to explain in a bit more detail what exactly the "Remission" means. They said that when we first came in and they diagnosed Scarlett if we were to count the Cancer cells in her body at that time the number would have been around 10 to the 12th. So that's 10 with 12 zeros behind it. They have now, after the first month of treatment, reduced that number of cancer cells to 10 to the 8th. So basically they have taken 4 zeros off the number of Cancer cells. So now there are 10 with 8 zeros amount of Cancer cells in her body. That number is low enough to put the word "remission" on her disease. It doesn't mean the cancer is all gone. Scarlett was placed in the "low risk" Category. What the word risk refers to is simply - The chance of the disease returning after the full term of treatment. It does determine the treatment steps for phase two and so on but basically there is still room for complications and set backs. We are only 1 1/2 months into a 2 1/2 year treatment program. We still have a long way to go. If we were to stop treatment now or anytime along the way they are most certain that the Leukemia would return.

Today Scarlett and I are in the hospital. We were admitted for the first of 6 in hospital treatments. We have been here since Wednesday. She's doing so well. One of the main side effects of this round of treatment, besides knocking out her immune system, is vomiting. They give her anti nausea meds to keep it under control and so far she's been good. Her appetite has gone way down which is fine and expected.

I do have to say one thing....She has won the hearts of all the Dr.'s and Nurses here. They just LOVE her. She calls them by name, gives them high fives, fills them in on her favorite current cartoon, borrows their stethoscopes and listens to their hearts, asks them if they like the park?, if they want to come shopping with her? and much much more. Today the Dr. was laughing at something she was telling him and he said "Oh Scarlett, your my favorite patient!" We feel like she's receiving such great treatment and we are so thankful to be back in Canada.

Scarlett is back to her normal chatty self, most of the time. She still has grumpy moments but who can blame her? She is thriving at home. She just loves the space and comforts of home. She loves her own room and her own bed. She is sleeping very well and when she wakes up in the morning she just plays quietly in her bed until one if walks by her room and sees her awake.

Thank you all for your love, concern and support. Scarlett is such a lucky little girl to have such a huge span of people cheering for her! We can't express enough gratitude. Thank-you.

Phase 2

Well phase 2 has begun. It is pretty intense. It is going to keep them busy and Scarlett will be subjected to lots of medicine and teatments. She is on a small daily oral dose of chemotherapy at home. Then every couple of weeks she has to go and stay in the hospital for 3-4 days to receive about 24 hours of IV chemo. Then since that is so strong they give her folic acid which is actually an antidote for the chemotherapy to stop it. Then they keep her in for another day or so to make sure she is stable. Bobbi will have to stay there with her. Then Scarlett will receive other meds periodically. She will still receive 4 days of the dex steroid every few weeks and some other meds (I can't remember the names) at various times. All of this goes on for the next 6 months. After tests, if all goes well, she will then go into phase 3, which is a maintenance phase for 2 years. The greatest concern right now is that being on constant chemo gives her a very low immune system. They will have to be very diligent in keeping her (and the whole family) healthy and away from mass germs as much as possible.

They have been happy with being in a home of their own. Scarlett crawled a few steps in the family room about the second day in the house. Then the other day, Bobbi was upstairs and Isabelle started yelling, "Mom! Scarlett is on the stairs." Bobbi came to the top of the stairs and saw Scarlett climbing up the stairs. She was just grinning. She took it very slowly and favored the right leg a lot. The whole family started cheering and she made it all the way to the top of the stairs. So that was great news considering they had not even been in the house for a week. A home atmosphere can work miracles in our self-confidence.

I can not close without thanking everyone for prayers, love and concern. Even a little primary girl in my ward is very confident that her prayers are being heard and answered and she is right!!

Best News Ever!!

Today Bobbi and Lance had a consult with the doctor to receive results of testing after her first 30 days of treatment. (phase 1) The doctor was so excited to meet with them! He said that he could not have hoped for better results! Scarlett has responded super well to this blast of drugs that were meant to basically put her in remission. Her blood tests were clear and so was her bone marrow! She is in remission! Yay for Scarlett - way to go, little girl! I was going to wait a few days and let Bobbi write this herself but I could not wait!!

There is still a journey ahead but this is wonderful news. We know that there are still cancer cells there. The test is such a small sample and we have a lot of cells. If treatment were to stop now, the cancer would most positively return. But the way she has responded to the treatment puts her into the LOW RISK category! This does not mean that she is in the clear. It means 2 and a half years of treatment and then testing up to 5 years. But it does mean that if she remains in remission till then it pretty much guarantees that the cancer will not return.

I believe that Bobbi said that her new treatment plan will start tomorrow and is pretty intense again for a bit. Bobbi can fill us in on more details as they learn more. They can expect that there may be unexpected hospital visits, maybe infections and possible concerns but still - super, duper positive news!! An extremely gratifying answer to fasting, prayers and a blessing. Thank you all for your prayers, thoughts and care.

HAPPY ANNIVERSARY BOBBI AND LANCE!!

A home is going to help!

Scarlett has not been walking or even crawling and is still on pain meds for her legs. She is very hesitant to use them. Even a couple of times on the weekend if I picked her up the wrong way at all, it would hurt her. She sits quite still and needs to rest a lot. Even after sitting on the carpet a few minutes on Sunday she asked to be carried to the couch because she needed to rest she said.

Today Bobbi spent some time at the new house unpacking. Scarlett and Isabelle were playing in the family room on the carpet. Bobbi noticed that Scarlett (without really thinking) started crawling just a tiny bit to get to a toy or by Isabelle. It was slow and careful. Not very much at all ... but some. We are hoping for positive things being in a real home! Also Isabelle is so fun, imaginative and plays so creatively that she can't help but be good motivation for Scarlett to want to play. Moments like this are still few, but positive.

Her meds will also change again as phase 2 starts soon so we will see what that brings. We are all having fun trying adorable hats on her and each other!! (since Isabelle's head is about the same size and mine may not be that much bigger!!) Isabelle lost her first tooth while we were there this weekend and that was a thrill - life does go on.

Moving!

Here I am sitting in the Ronald McDonald House with my beautiful sleeping grand daughters. Bobbi and Lance are in Okotoks unpacking things that were brought up from Lethbridge today by some movers. Isabelle has a dreadful cold (that we sure hope Scarlett does not get) and Scarlett needs quite a bit of attention so I thought Bobbi and Lance could use some time in their house without the kids to care for. Besides I like it!! They have rented a very pretty house and are happy to have their own stuff. Scarlett does not even recognize anything as it was 2 years ago that they went to the Philippines! For Isabelle it is like Christmas with all of her toys from the past!!

Scarlett is losing her hair but is soooo lovable all the same!! She still gives you that little winning, flirting smile and looks at you like she is just teasing you to bits! What a sweetie! Took her medicine like a trooper for me tonight and let me sing to her and snuggle her to sleep. She is often quite quiet but then she gets chatting away! Her appetite is decreasing a bit as her meds are changing. In a few weeks they will know more about the next phase.

They are so excited to have a 'home' of their own now. Really ready for things to get as normal as possible. Lots of blessings as the forecast snowstorm did not materialize!  (first snowstorm of the year is always a movers' nightmare!) It will probably take them at least a few days to vacate this place but what a blessing it has been for them. They are still so busy with hospital visits and all of the things they need to do with both girls. Lance is also working online for the Philippines company to help out the manager taking his place. The days are just packed full. Keeping everyone as healthy as possible is a full time job as well.

Thank you again to all, for your love and well wishes! We feel of your support, love and prayers! We really do! Bobbi and Lance often tell me how much they appreciate it! Bobbi wishes she could call or somehow thank and express appreciation to everyone but the time is just not theirs. From family and friends in Alberta, BC, the states and as far as away as the Philippines and Dan and Eiaw in Thailand!! You all make it easier to keep going and to feel loved!

Park Day

The day we went to look at the house we have rented was a sunny day. It was fairly warm and there was no wind. There is a little park just behind the house so after we were finished, we walked over. Parks are fairly safe for her as far as germs go. They are outside in the wide open. I think my mom mentioned this day a few posts ago....anyway we were only there for a few minutes but it was such a nice time. Scarlett LOVES the swings at parks so we wiped it down and started pushing her. She had the cutest little smile on her face. Lance made the comment to me "I haven't seen her smile like this for a long time." Isabelle enjoyed herself too. Here are a few pictures from that day. Enjoy.

Lance and Scarlett

Scarlett

Scarlett and Lance

Isabelle

Isabelle

The Latest

Hello Everyone, It's Bobbi

Things are slowly moving along. Yesterday was a very emotional day for me for some reason. I guess those days will come and go.

Scarlett is hanging in there. She is really losing a lot of hair. It's all over everything. Her pillow, coats, hats, and the back of her shirt or Jammies is always covered. It's really hard for us to watch. She can't feel it but when I comb her hair after her bath the comb is full. The back of her head is pretty much bald. The front and the sides have a little bit more.

She is quite lethargic most of the time. She spends a lot of time just laying around either watching TV, looking at books, or just watching us putter around. She doesn't have a lot of energy and is very pale in color. She takes lots of little cat naps throughout the day in between her meals. She loves to snuggle her blanket and suck her thumb. She is still eating a ton of food so we are trying to keep up with that. The Meds are still a big challenge for everyone - twice a day.

Her mood is quite bad. She is pretty grumpy and quiet most of the time. We think the mood is a result of a few things combined...the meds(especially the dex steroid), she feels sick and yucky, and she's tired of it all. At our last appointment the Doctor came in and said "How's your little dex monster doing?" So it is a real, normal side effect of the drug.

There is still no progress with her walking or putting any weight on her legs. She did crawl on the bed for second the other day, so that's something. But she hasn't done it since and gets very agitated with us if we even try and prompt her or suggest trying to crawl or stand up. The Doctors aren't too worried about it...they say it will come with time. So we are just waiting.

It is so hard for Lance and I to see her this way. She is really not herself....at all. It's hard to watch your fun, happy full of energy and life little girl go to a sad, grumpy, sick, little bundle. There are brief moments where she seems to snap out of it and for just a second we get a glimpse of the sweet Scarlett we know. They are very brief and few and far between but we just love it when it happens and those moments help keep us going.

We still go into the hospital quite a bit for treatments and blood tests. On Thursday she has a big procedure and gets put under for it. They are taking some more bone marrow for testing as well as spinal fluid. Those are long hard days. She doesn't respond so well to anesthetic, it makes her feel quite sick. Along with the soreness from the procedure, makes it tough times. One of the hardest things about it this time is that she has to fast before hand. Her eating is so out of control along with her mood swings....it's going to be a very hard day.

We have rented a 3 bdrm house in Okotoks for the winter. It's only a 6 months lease. We will be transferring there in the next few weeks. We are quite excited to have our own space again. This living all in the 'same room thing' is getting a bit old. We will be traveling quite a bit for our hospital appointments but we have a bit of family out there who can help us out when we need it. The drive is only about 30 - 45 min so it's not too bad.

We still have no idea what the next 8 months or so of treatment will involve. They can't give us much detail because they still don't know how her cancer is responding to the treatment so far. By the end of November we will receive a lot more information. Basically she will be placed in one of three categories. Moderate, Low or Very low risk. Once they know that, they will design the next phase of treatment for her. We do know that either way it will involve a few admittances (2-3 days at a time, stay in hospital) as well as what they call pulses of steroids and Chemos. These pulses will come at different times with different lengths and different amounts. All the details are still to be figured out depending on her risk assessment.

In our personal lives we are not making any decisions farther than the six month lease we just signed. It's impossible for us to see exactly what we will be able to do, no plans can be made. There are just to many unknown variables at this time.

We still continue to be blown away at the amount of love and support we feel. Thank you everyone for all you have done.

Staus update...

We are doing pretty good. Slowly we are starting to find some sort of routine and schedule. Things are still quite unpredictable at times but generally we are setting into the fact that yes she has Leukemia and this is how our life is going to be for a while. The fog over us seems to be lifting a little and we are starting to be able to think more than just a minute ahead. The days aren't full of emotional beak downs. (They still happen but not as often)

We can form complete sentences and generally feel more conscious. That may sound a bit weird to those of you who have never been hit over the head with the news of cancer. It really knocks you off your feet for a while especially when it's your baby girl. Things are just a blurrrr for a long time. However, we are finding our footing again....slowly.

The hardest times of the days are medication times. Morning and night....she HATES them and I don't blame her. It's extremely stressful trying to get her to take them and a lot of the time we end up having to pin her down and force them in. It's awful, and emotional for everyone involved. Lance and I do it together every time. I can't yet imagine having to do them alone. The other stressful days are clinic days. They always involve a poke and meds which she obviously doesn't like and they make her so sick. Also sitting there, in clinic, all day is hard with the extreme food cravings and constant eating. It's hard to stay prepared.

We are starting to talk about renting a house here in Calgary, close to the hospital for the winter. We are looking forward to the end of November when we get more information as to what the next 8 months are going to look like for Scarlett and for us. We are anxious for that time when we can find out how her cancer is responding to the Chemo Therapy and the Meds.

We are so unbelievably grateful to all those of you who have helped us through this so far. For all your thoughtful, encouraging messages. For all your love and support. We know we would never have made it this far without all of you. Thank you for being involved, even in the smallest way, and for caring so much.

Now we will just continue on...moving forward day by day....

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!