2 Year Mark

Today is our DOD (Date of Diagnosis). 2 years ago today, we heard the news that changed our lives. Rylee has cancer. About this time, we were aboard Life Flight, fighting for our daughter's life. We are in a much better place today.

It's unbelievable to me that we're already here. I remember sitting in the hospital room at Primary Children's, thinking that this day was a long time coming. And it has been a long road....yet it has flown by.

Rylee was just 18 months at diagnosis. She is now 3.5 years old. Jaden, our then unexpectant baby, is now nearly 20 months old- older than Rylee was at diagnosis. Yet, I look at him and cannot even fathom doing all that we did with a child his age. She was born with the strength to do this...it was part of her plan.

We have received so many blessings. So many little miracles. We have experienced some of our greatest sorrow, yet some of our sweetest joys. It's definitely been a bitter-sweet battle. We've lost a lot, but we've gained a lot too.

Rylee has been a little trooper. She has fought a good fight. She's been through so much, yet she's never resisted. She took things as they came. She's never questioned it. She has made it all bearable for me.

This is her just waking up from the anesthesia after her spinal tap last month. She's probably had over 20 of these. She only has 1 left.

Today she had chemo. Her blood counts look much better than they did 2 years ago. When we arrived at PCMC her HCT was a 10! Normal is like 37. The nurses in the ER at Primary's all took a double take...they couldn't believe she was alive and had a count that low. That's a moment that takes your breath away.


Here we are this summer at Relay for Life. This photo is from the Standard Journal- did you see us on the front page? Don't mind me: I'm telling Rylee where the camera is. Don't mind Rylee: She was tired- of all the days to skip a nap!

What a journey! One leg of the race is almost finished- treatment. She has two more hits of chemo (Vincristine); 1 more spinal tap; 2.5 more months of her daily medication (Mercaptopurine); 11 more doses of home-chemo (methotrexate); 10 more doses of her once a week med (Dapsone); and 15 more days of steroids (Dexamethasone) left. You better believe I know all of these drugs plus spelling, dosage and everything else by heart. Some of them will only need refilled one more time. I can't even imagine. These drugs have become part of our normal routine. "Rylee, brush your teeth, go to the bathroom, come take your chemo, go to bed." It's amazing what you can learn to live with.

Today's treatment was basically October's treatment-just how the days fell. She gets chemo every 28 days. She gets to push October back by a few days because we'll be out of town, so her next one will be the first of November and then her last one will probably fall right around Dec. 1. We will then finish out home meds for another week and SHE IS DONE!!! Merry Christmas to us.

I've been a little nervous about crossing back over to the other side. I decided today that when treatment ends, we will be excited and hopeful, which is better than anxious and fearful, if you ask me. Rylee will continue to get blood checked monthly and if things continue to look good 6 months post-treatment, we'll be able to have her port removed. Of course she'll be checked her whole life, but checking beats treating any day.

I must say that 2 years out isn't so bad. Sure we hear a lot of "My belly hurts." or "My bum hurts." We still have our good days and bad days. But..Rylee is in preschool this year, she's in speech therapy (trying to catch up, since her body was a little busy at that point in development) and she learned to ride her bike without training wheels this past weekend. She's just like any other 3.5 year old girl....I am so grateful that we're here and that she's here with us!

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P.S. I'm wanting to put together something for Rylee to recap her cancer journey. If you have any pictures (10/2008-present), thoughts, perspectives, comment, etc. regarding Rylee's cancer journey/experience from anything that we've shared or you've seen first-hand, please leave a comment or email me (send pic here) at natalie-taylor@hotmail.com. I know I've seen some family members' pictures that caught moments that I can't even remember-- I'd love to have a copy.

Thanks!

All Your Best Ideas

Hi blog friends- are you shocked that there is finally a post? I don't know where the days go....I need to dedicate some time to this within the next few weeks.

But...for now, I'm wanting to gather all of your best ideas. Not that I needed another thing to do, but my neighbor is the PTO President and has somehow reeled me in.

We need to do some fundraising- our kids go to a new school and has a little bit of playground equiptment, but really need more stuff.

So...I want to know some school fundraising idea. I know my blog readers live everywhere & I'm curious to hear what other schools/places have come up with.

Give me all your ideas---everything you've seen done. There are so many creative/brillant minds out there.

Keep checking back here too---I'm going to work on updating some stuff little by little.

Thanks-- Natalie