COOKIE - Day 162 and Counting!

Dearest Friends and Family,
This is a picture of COOKIE sporting her new glasses and working on her laptop! Can you believe the dark hair? It’s stunning on her, especially with her bright blue eyes and long, gorgeous lashes! OOPS! No picture! Sorry! I'm having trouble posting pictures on the this blog. Trust me. I've tried. Take my word for it. COOKIE's new glasses are adorable!

Have you noticed the days getting shorter or is it just because there’s more to do this Fall? The trees are turning colors and the leaves are falling. Halloween and Thanksgiving decorations are out and the mood everywhere seems to be Autumn but the weather has yet to catch up to the season! It’s still warm and shorts and tshirts are still the dress code here in beautiful sunny South Bay!

I hope all of you have adjusted to school being back in session and cold and flu season rearing it’s ugly head! Flu shots for EVERYONE! And I mean everyone, no matter what age! I took Parker to school the other morning and I was appalled at the number of people coughing and sneezing, kids and adults alike! PLEASE KEEP YOUR CHILD HOME IF THEY HAVE A COLD! I know that we’re hypersensitive to germs, especially this time of year and having to let Parker venture out of the nest to go to Kindergarten. We have to shower him off and change his clothes when he gets home from school every day! Thankfully, he’s become a really good hand washer and he carries his little bottle of GermX around with him. He even shares it with the kids in his class. A couple of the kids started to bring some of their own after Parker’s class had a whole day of “germ study”. In preschool, they taught Parker to sneeze and cough into the crook of his arm rather than his hands. GOOD PRACTICE for all!

I feel like a preacher today. I hope all of you are feeling well and avoiding the germs!

We’ve been riding the post bone marrow transplant express roller coaster. One day up, next day down, one day up, next day down. Then, two, three days down. Not good.

COOKIE has been struggling with food issues and an entire lack of appetite. No favorites, no cravings, no hunger. What an ordeal to try to entice this darling girl to eat SOMETHING, nibble ANYTHING! Doctor’s said that we needed to try to get her to drink something other than water. She refuses Gatorade or Pedialite and it was no easy feat to get her to drink anything at all. COOKIE is averaging a two pound a week weight loss. BUT, she’s been so ill for the last couple of weeks that she lost two pounds from last Friday to Tuesday. She’s been unable to hold her medicine down, or anything else for that matter. She has been so ill that even the smell of food has upset her tummy and she has to leave the room. She’s lost almost all of the puffiness from the steroids she was on. We were moments away from being admitted to the hospital yesterday morning when COOKIE willed herself well.

So, after another medication adjustment, things seemed to turn themselves around and she’s able to drink real Coca Cola and Capri Suns. Yesterday, she actually munched on some Cheddar Cheese Rice Cakes and ate a hot dog! YaHOOOOOOOOOO! The “up side” of the roller coaster ride.

The “down side” is that COOKIE’s tongue is very sore. It has little bumps all over it and it’s very difficult for her to eat anything. We’re on the phone with one of our favorite doctor’s as we speak and hoping to get something called “Magic Swizzle”. It’s a mixture of Lidocaine, Maalox and Benedryl. It numbs the tongue so she can eat. It is truly magic. The actual cause of the tongue problem is a mystery and can be attributed to several different things but the kids do tend to get it and COOKIE’s got it.

Her teacher comes three days a week, Mondays, Wednesdays, and Fridays. She’s doing her grade level work and thriving. She’s loving the homework and the challenge. COOKIE always loved school and everything that goes with learning.

Parker LOVES Kindergarten and Ms. Wilson! The changes in this little boy are already showing and he’s learning new things on a daily basis! His teacher is handpicked and has had 34 years to perfect her craft. How lucky is she to have Parker this year???? She actually sent home some work for COOKIE to do to help with Parker’s class. COOKIE got to go to the school one day and be the Teacher’s Assistant. That was the day Parker’s class learned all about germs and they didn’t even question why COOKIE was wearing a mask. They all just wanted “Miss Cookie” to read to them and help them.

In a nutshell, COOKIE is on track in her recovery efforts, with bumps in the road two to three times a week. There so much to this process. It’s not just a matter of a little cut healing itself. Her body has been through a huge transformation, inside and out, and the recovery from it is astounding and long term, to say the least. We just never know what the next day is going to bring us. We have 9 toes on the ground floor at home and one little baby toe in the hospital, all the time. The group of physician’s we’re involved with at UCLA are a wonderful group that are completely accessible to us at all times. That helps more than you can imagine.

Personally, from this grandmother’s perspective, the most difficult aspect for me are the dressing changes on the new lines. COOKIE’s skin has always been so very delicate and sensitive and her beautiful body is covered in a fine fur from one of the transplant medications. Taking the tape off and on, every day, and removing the entire dressing once a week is pure torture. Shelee has implemented every single possible “trick” to making these processes as simple as possible but the fact remains that the dressing still has to be pulled off of a very delicate area on the inside of COOKIE’s upper arm and it’s hell. To say that watching the process is agonizing and watching COOKIE steel herself for the pain is heart rendering is an understatement. I simply cannot assist without tears squeezing themselves out of my eyes and rolling down my cheeks one right after the other. I’d make a terrible nurse. And I’m only there to help COOKIE! That’s a laugh. She teaches ME, every time. When Aunt Shannon is in town, she’s the elected “comforter” and she does a perfect job. I think I’ve just been doing this too much for too long. I honestly don’t know where all of those darn tears come from. Afterwards, the three or four of us stand and hug and share a triumphant moment…….until the next time. COOKIE bounces back, every time, and moves on and picks up wherever she was before we did the dressing change. I, on the other hand, don’t always bounce back so quickly. As I said, it’s hell. And YES. I take it in the other room.

Well, I’ve given you lots of information today and I hope you feel updated. I know it’s been a long time since I last wrote but there’s truly been a lot going on. I’m sure if you have school children you know what I mean. AND, Daddy (Matt) had to go back to school too so this house has really undergone some changes. All is well though and we’re still taking it one day at a time, one foot in front of the other. Is there any other way?

Our best to you and yours. With love,
Cookie, The Grandma