Today is Veterans Day. Today is a day we honor those who serve our country. Those who put their lives on the line to protect our rights. I am choosing to also honor a few friends who never got the chance. To honor these special friends who died just trying to live.
Too many friends are still fighting. No matter what your religious belief, I ask for "prayers". Please please pray or light a candle for our little friend Matthew who is still fighting very hard. He is so very very sick.
|Much needed hugs from my big brother. I missed him so...|
Nev just started 6th grade here in Novato. This amazing girl just went through radiation and is now going through Chemo following three separate brain surgeries. Nevaeh is being treated here locally at UCSF where Kayla had her surgery. These next few weeks of waiting to see if there was any tumor growth are torture for her Grandma who is now raising her and loves her like she is her own. I love this family and this little girl. She remains very strong and positive! Please send good vibes and prayers their way.
Today, one year later, we are celebrating all the blessings we have at this moment. I just feel so grateful to be able to be doing what we should be doing today... Laughing. Smiling. Playing outside. Living. I have already hugged my kids 100 times today. I won't stop. Ever. Today, one year later, I am not pacing the floors of my house with my one hand gripping the top of my head while the other is taking and making calls searching for hope and feeling completely helpless. Today I did not hear the words from a neurologist, "you can either go to the emergency room or wait three days until Monday to make and appointment for brain surgery. Your choice." Today my little girl does not have a tumor in her brain. One year later I am not in one room sobbing my heart out one minute while in the next minute walking in the other room to face my children with what ever smile I could muster at the time... praying they couldn't see the fear and pain in my eyes. One year later, we celebrate being alive and all of the blessings this lesson has taught us.
Kayla continues to amaze us with how well she is doing. Her weight is just about where it was when she first started showing signs of getting sick. Her cheeks are fuller. Her skin just radiates health. She is eating just about what her brother is, which is a HUGE leap from where she was only 4 months ago. She has had a relatively head-ache free month with little to no nausea. She is still taking her Zofran morning and night, but luckily that's it!
The kids are in a running club twice a week before school. (Not that Kayla really needs to be running... but gaining muscle at this point would be great!) They love it! Anthony amazes us at his speed. This week he ran 3 1/4 miles in about 40 mins. Just incredible.
Kayla started Piano lessons last month and is loving it! She had been asking for years if she could play and it was never the right time for one reason or another until now. Watching her play now makes me so proud. She really is good! Thank goodness she has loving grandmas who are helping to make this possible right now :)
October crept up on me and was over all a pretty emotional month. The days leading up to Halloween were tough as the memories from last year flooded through me. The father daughter dance. Trick-or Treating. The change in the weather. Once the holiday was over, I did feel so much relief that we got to have our first official do-over. So much relief that it was not at all like last year. We kept it very low key which turned out to be just what we needed.
This month, the new St. Jude commercial titled "bedtime" has started to air on TV. I don't have a way to share it here on the blog. I was given a disc by ALSAC but there is no way to share it and it isn't on their website yet. So I hope you all get to see it! Also, the calendars have been sent out to all of the Partners in Hope members. Do you know what being a partner in hope is? It's a pledge of $19 per month that you donate to St. Jude. You can't believe how much this helps. It costs SJ $1.8 million dollars per day just to operate. If you are a PIH, you will receive a holiday card (in addition to many other wonderful things). Just before we left, Kayla participated in this incredible way to say thank you to all of the donors who make St. Jude run.
Here is a message I have to share with you all that I received from a friend this morning: "Sending you, Kayla, Denny and AJ a big hug today. What a difference a year makes. Here are the things that have you have taught me: knowledge is power, listen to your body whisper so you never have to hear it scream and I continue to follow your friends and their babies from St. Jude's - I never turn my head even when one earns their wings and it breaks my heart. We owe these families, doctors, nurses and researchers our awareness. We owe Kayla our awareness. For this I only have you to thank. Lots of love - Rachael"
To those of you who have read my words, followed our story and followed these stories without turning your head... thank you! Cheers to a truly NEW year.