Help Isabel

I caved and started a new family blog here:

http://tootandotto.blogspot.com/

I haven’t been updating Isabel’s blog daily like I used to. It’s become somewhat of a chore to update weekly, so I’m taking this as a sign to end it for now and immerse myself in life after childhood cancer.

It’ll take getting used to not posting a cute photo of the kids most every day!

Isabel was 5 years old at diagnosis and is now 7.  She’s been off treatment for three months and to look at her, you’d never know that she had cancer. You couldn’t pick her out of a line up if asked which child fought leukemia. She’s a healthy, beautiful, happy girl.

Gabriel was just a breastfeeding toddler when we started this long journey. He is now a big, bright, happy 5 year old. What a relief it is not to have to drag him to various hospitals over and over. Gabriel is now free to enjoy his own childhood without the interruption and boredom of hospital life.

Isabel is very mature and will forever be affected by her childhood leukemia battle, but surprisingly (at least to me), she doesn’t remember a lot of her leukemia treatment. I have memories that are seared into my mind, the details of each surgery and hospital stay. Isabel, on the other hand, has simply forgotten and stays in the happy present.

Living life while fighting cancer, chemotherapy appointments becoming almost routine, changes you. Isabel remembers the fear and pain associated with cancer treatment, but she has funneled this unique life experience into being a  smart, capable, compassionate and strong person. I do not doubt this ordeal will help her become exactly who she wants to be.

I’ve found life after treatment isn’t as easy as I imagined. I find myself in a state of panicked shock. I’m scared and not trusting that this is really it. That these past two and a half years of constant chemotherapy, hospital stays and the wildly scary spinal taps are really over.

This blog helped me in a very real, cathartic way, especially during the early and ever so frightening first 6 months of treatment. Just getting all my swirling thoughts out of my mind and onto these pages helped me cope more than anything. I am beyond happy that there are no more  chemotherapy appointments or surgeries or spinal taps I just need to write about in detail. I’m glad I kept this journal and I’m proud of myself for documenting our experience in hundreds (thousands) of photos.

Now it’s time to step away and live life with my husband and children without childhood cancer. (We’ll see how long I last before I start a different blog!)

The beginning of leukemia treatment, 2007.

The end of leukemia treatment, 2009 (her love of dogs has never wavered!)

A few things we’ve done this past couple weeks:

Isabel finished the very last of an antibiotic, named Septra, that she took three times a week for the past 2.5 years.

Completely and totally done!!!

Alan got serenaded in bed by chin people on Father’s Day.  Just one of the many kid-terrific ideas to show their love.

We’ve taken a gazillion walks with our little dog.

Of course there’s lots of swimming…

and birthday parties

We’re enjoying the summer reading club at our library.

We made crafty father’s day gifts for Alan.

And lots of just hanging out with friends!

We had a wonderful time at Safari West.

Click here to see our safari experience in photos:

http://flickr.com/gp/carlescrue/4JPn2U

They aren’t the greatest of pictures.  I was jealous of the people with professional cameras, really capturing the beauty and detail of the animals.  I, on the other hand, used my little hand held one button camera while running after the kids and marveling at the animals myself, taking their photo an afterthought.  You can still see what a great time we had though!

It was a perfect off treatment family celebration.  We are truly blessed that Isabel is doing so well.

We are off to Safari West to spend some time experiencing the animals of Africa.  We’re all packed and ready to go.  Isabel and Gabriel are so, so, SO excited!  This is our first family trip where we don’t have to pack any medicines! None!

This is really the perfect gift for Isabel.  She loves animals so much and is so interested in wildlife.  To be able to spend the night at this preserve,  see the animals up close and be able to interact with them is a dream come true for her.  Expect lots of photos in a couple of days!   Hurrah!

Isabel had a great check up and blood draw! It felt so good to turn right and walk *away* from the chemo room, instead of into it!!

The visit was fast, easy and painless.  The woman who took Isabel’s blood was a pro and Isabel was a little stunned at what a piece of cake it was.  Isabel had become anxious about it and was just starting to cry as needle was unwrapped.  The blood draw was over in a blink of an eye and it stopped her short.  It couldn’t have gone more smoothly.  I hope this is the way our monthly blood draws go from now on.

Isabel is doing extremely well and there were few concerns with her current health.  She does have weakness in both her legs that we attribute to the IV chemotherapy drug, Vincristine.  Isabel keeps up with her peers, but it is apparent to me that she is slower and her gait is different than the other children.   Her ankles give out on her from time to time and it is not uncommon for Isabel to suddenly fall to the ground while walking or running.  I talked with the oncologist about it and he told me to expect her legs to strengthen and to think of her still on chemotherapy right now, as her body is still processing the constant doses she’s had for the past two years.

We talked about Gabriel’s aspiration to be a doctor and the oncologist noted how few leukemia survivors end up becoming doctors as opposed to the many siblings who end up in medicine.  Isabel spoke up to say she wanted to live on a farm when she was older, which led to a wonderful conversation about Isabel’s future and how she is expected to live a long, leukemia free life.  There are concerns of course, with the late effects and the increased risk for secondary cancers later in life, but overall the feeling is that Isabel beat childhood cancer and is stronger for it.

Isabel’s blood test results came back perfect.  Across the board, all her numbers were nice and strong, indicating a very healthy little girl.

I look at these photos and see how far we’ve come.  She was barely five years old when we started and now, here is my fashion conscious 7 year old second grader.  Even though we’ve come such a long way, I also see what a little girl she still is.  I’m so glad she can get back to being just a regular kid.  I still can’t believe we’re really done.

Isabel had her vitals checked, and is growing wonderfully. I put some numbing cream on both her arms in anticipation of the blood draw.  The numbing cream works wonders, as long as it’s had enough time to soak in.  The nurse brought me small clear bandages, so Isabel was set and the cream stayed on nicely while we chatted with the oncologist.

Playing with the waiting room toys in the pediatric lab.

All done with the quick and easy blood draw!

Isabel has her second off treatment blood draw and check up with the oncologist tomorrow morning.  Alan has to work, so I’ll be taking her into Oakland without him.  That in itself is another off treatment milestone. This is not a chemotherapy appointment.  It’s simply routine and we expect Isabel’s blood test results to be looking good.  There is really no reason why he should take off work to join us.

Honestly, I’m scared.  Isabel is scared too.  She dreads the blood draw and I dread the wait between taking the blood and finally exhaling when I hear the results.  I dread the length of time where my mind is plagued by the “what if’s”.

I look forward to the future, where I won’t be so anxious before each of Isabel’s blood draws.  I lost count years ago of how many times Isabel has had needles stuck in her arms.  Not counting the many IVs throughout treatment and hospitalizations,  she has had her blood drawn every month for the past 3 years.  And here I am, still talking about how hard it is to deal with mentally.  I know I’ll never be relaxed about it, but I’d like it to be just a bit less intense, please!

Here is Isabel on “Crazy Hair Day” at school last week:

http://www.marrow.org/index.html

Please. Think about it. You can sign up by just having a cheek swab…no blood draw necessary.

You go on the registry and wait. If you happen to be a match, the donation nowadays, is very similar to a blood bank donation. They hook you up to a machine, your blood goes in, they take the stem cells and then the rest of the blood goes back into your body. This takes about 3 hours.

Think about it…YOU COULD SAVE A LIFE.

This month, the national registry is waiving the fee in a marathon to gather donors. You can sign up for NO FEE.

Leukemia does not know discrimination. It is insidious, it goes after young and old, of any race…it doesn’t matter. It went after my child and we were “lucky”, all she needed was chemotherapy. Think about it, it’s lucky that all we needed was years of chemotherapy.

There are those who are not so lucky, those who can only hope to survive with a bone marrow transplant. But what if you need a transplant and there is no match?

If Isabel needed a bone marrow transplant we would have to look for a someone on this list since no one in her family is a match.

http://www.marrow.org/index.html

Isabel graduated first grade today!

I can not believe my eldest child is now a second grader.  I never, ever thought this far in the future. Not only is she done with first grade, but she’s totally done with cancer treatments. I just…can’t really believe it.  It was so intense to just get through each chemotherapy phase, that I continually focused on the here and now, not looking too far into the future.

These off treatment milestones keep coming and I continue to be surprised. I don’t know what I expected but it’s been quite a head trip as Isabel moves out of being a little kid and becomes entrenched in big kid/pre-tween territory.

She’s doing great, reading at a third grade level and enjoying the prospects of summer.

Today the kids went on a field trip to Petaluma Bounty, an educational urban farm, to learn about the importance of a healthy local food system and to do some planting of their own.   Isabel and Gabriel loved it, of course!