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.