Tonight. For the very first time. I looked at these numbers not as a sign of what has been "lost" but what has been gained. A big "HAHA" to you 11:11. I won. We are here. We are HERE! We are here.
I am releasing the negative feelings I have toward this time. It is time. 11/11 was when we had our MRI. 11/11 was when our lives were flipped. I am SO sick and tired of cringing at this time (which I so happen to see every single day at least once, if not twice... by coincidence). I will now see these numbers as a symbol of something new. Hope. Awareness. Love. Hope. Faith. Cure. Peace. Deep breaths. A second chance. This number will no longer haunt me. I will not flip it off. I will not cringe or grimace. I will smile and high-five it. I will be happy when I see it from now on because it is a reminder to me................ to all of us..... to just be so grateful for every gift we are given. Big or small. We survived our own 11/11. We did.
I could actually go on and on. With SO many details. But it's 11:20 now. No. Scratch that 11:21. I should sleep. I will now happily retreat to my own bed. I will never ever ever take that walk for granted.
I am just so damn happy that 11:11 finally feels............ happy. For the first time in almost 9 months. I just wanted to share this feeling with the people who continue to surround us with our wings. For you, we are so grateful. So very grateful. We love you all!!!!!!!
This is the story of a girl named Kayla who at 7 1/2 was diagnosed with a cancerous tumor in her brain called Medulloblastoma. "You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. " Genesis 50:20
Tuesday, July 31, 2012
Saturday, July 28, 2012
A New Journey Begins
Ok, I'll give you a hint.........
Somebody in our family is going in a different direction. If you think I could actually fit into that scrub top, you are wrong! Almost, but no. After many months of keeping this decision pretty quiet, we are ready to share our exciting news. Denny is going into medical school! I know, shocker right? He has already been a nurse for the past 8 months, so he is ready and prepared. What an incredible healer he will be. As you can see, the kids could not be more proud! We are all just so excited that something so amazing will come out of what we have just been through. It all began in the PICU...........
Kayla had just gotten out of surgery and she wasn't speaking yet. We waited anxiously to see what would emerge after the very tedious and lengthy brain surgery. We had many many hours of watching pumps and listening to beeps. Getting to know each sound and what it meant. Carefully monitoring the fluid that was draining out of her fragile skull. Constantly making sure that we had nothing but the best for Kayla. It was there in that room that Denny realized how much it empowered him to be able to be at Kayla's bedside and take tedious care of her in the most critical stage. Every monitor he learned. Every nurse he took painstaking efforts to connect with. In one, we gained a true friend. An incredible friend who we just connected with so effortlessly. Every person that came near Kayla was thoroughly examined through daddy's watchful eye and it was there that he realized that a new passion was blooming. It was in that room that he realized this could be something he could finally feel fulfilled in doing. Once he started opening up to the medical team about his new interests, Denny was surrounded by strength, encouragement and nothing but "Wow... YOU would be incredible in this field". This encouragement continued and built as Kayla's journey to health continued. Every single doctor would smile and nod. Many offering to write glorious letters of recommendations when needed.
Online classes have already began (of course, Den got an "A" in the first one). He is signed up for two more and will be beginning a CNA course (certified nurse assistant) August 10th. The course is a month long. Most hospitals require you to be CNA certified to be considered for hire so we will start there. Oddly enough, Den spotted a position as a PCA (Patient Care Assistant) at UCSF where Kayla had her surgery in the pediatric oncology floor. What are the odds? The main qualification, you have to have your CNA certification! So, off he goes. If the position is still there, then that is meant to be. Obviously, getting into a hospital and getting on hospital insurance is our goal since we are on our own with insurance now. It's a HUGE ouch and we are now down to one income. It's ok. We will figure it out! I am just so proud of Denny for listening to his intuition and following his heart. He will be incredible at it. This we already know. Any hospital will be lucky to have him. He can't wait to take care of others the way that we have been taken care of on this journey. Our experience will serve to strengthen his care and compassion.
Kayla continues to eat and eat... and eat.
Kayla had just gotten out of surgery and she wasn't speaking yet. We waited anxiously to see what would emerge after the very tedious and lengthy brain surgery. We had many many hours of watching pumps and listening to beeps. Getting to know each sound and what it meant. Carefully monitoring the fluid that was draining out of her fragile skull. Constantly making sure that we had nothing but the best for Kayla. It was there in that room that Denny realized how much it empowered him to be able to be at Kayla's bedside and take tedious care of her in the most critical stage. Every monitor he learned. Every nurse he took painstaking efforts to connect with. In one, we gained a true friend. An incredible friend who we just connected with so effortlessly. Every person that came near Kayla was thoroughly examined through daddy's watchful eye and it was there that he realized that a new passion was blooming. It was in that room that he realized this could be something he could finally feel fulfilled in doing. Once he started opening up to the medical team about his new interests, Denny was surrounded by strength, encouragement and nothing but "Wow... YOU would be incredible in this field". This encouragement continued and built as Kayla's journey to health continued. Every single doctor would smile and nod. Many offering to write glorious letters of recommendations when needed.
Online classes have already began (of course, Den got an "A" in the first one). He is signed up for two more and will be beginning a CNA course (certified nurse assistant) August 10th. The course is a month long. Most hospitals require you to be CNA certified to be considered for hire so we will start there. Oddly enough, Den spotted a position as a PCA (Patient Care Assistant) at UCSF where Kayla had her surgery in the pediatric oncology floor. What are the odds? The main qualification, you have to have your CNA certification! So, off he goes. If the position is still there, then that is meant to be. Obviously, getting into a hospital and getting on hospital insurance is our goal since we are on our own with insurance now. It's a HUGE ouch and we are now down to one income. It's ok. We will figure it out! I am just so proud of Denny for listening to his intuition and following his heart. He will be incredible at it. This we already know. Any hospital will be lucky to have him. He can't wait to take care of others the way that we have been taken care of on this journey. Our experience will serve to strengthen his care and compassion.
Kayla continues to eat and eat... and eat.
LOOK AT THESE GLORIOUS HAIRS!!!
Friday, July 27, 2012
Day By Day
Three weeks home today. So much has happened since my last blog post that at times I almost felt too overwhelmed to update. Nothing bad, let me just start by saying that. Just a lot going on here and not a moment of idol time to sit and share my thoughts.
Last week was pretty hard. I kept praying that people would be gentle with my heart because I knew I needed it. I was lucky to be surrounded by so much love and understanding. Constantly I was lifted and reminded how special the people in my life are to me. How much these relationships keep us lifted and supported during some of the scariest times.
Kayla's weight at one point had dipped down to 35 lbs. As a parent, I can not even explain how hard it was for me to look at my child who is almost up to my shoulder in height and see her at that weight. Kayla has been a very lean girl her whole life. She has always been 50% in height and 25% in weight when measured at her yearly check up appointments. There was a point last week when my heart broke. We were having a garage sale with our friends down the street when Kayla said something that jolted me into thoughts, fears and feelings. In hopes to get some calories in her as is our constant battle around here, we had given her a Scandi-Shake (which when mixed with ice cream, peanut butter and a banana, packs a punch of 1200 calories! Kayla had gotten about half of her drink down when she "choked" on a teeny tiny peanut chunk. (Have I mentioned her very sensitive gag reflex?) We could tell by her breathing that there was no talking her down from that I'm going to lose it moment. There in the middle of the driveway, all of those glorious calories came flying out in an instant. I could see in Kayla's eyes that she was so disappointed in herself. We all told her it wasn't a big deal and that most of the calories would still be in her... but I could tell, she was taking it hard. She has only gotten sick two times since being home. We know that only one time it was a result of nausea. There is no one who is harder on Kayla than Kayla. Before long I found her sitting by herself with tears in her eyes. I walked over to her and put my arm around her tiny shoulders to see what was going on. "I'm just a bag of bones. You should SELL ME" she yelled through tears. Nothing could have been worse to hear. You can only imagine how my heart ached for the pain she was feeling. It was a very hard week for Kayla.
Friends were a constant source of support for us all as we tried to gain ground on our new normal. The kids were all trying to grasp the fact that Kayla isn't quite the same friend they once played with. Every one of them were exceptionally kind and understanding. I can only imagine how hard it would be to have this friend who now needs to stop and lay down so frequently. I just kept reminding them that this is only temporary! As the week went on, we continued to see Kayla start to thrive more and more. She diligently weighed herself every day at the same time and at each meal asked what she could have next. Days are exhausting as we are short order cooks! Constantly making each and every single thing that she asks for stopping at nothing to keep that belly stretching. I am happy to report that she is now 36.4 lbs. It's a slow battle, but we will win it. Between the nutritionists, mothers instinct and the billions of suggestions from everyone, I don't think there is one thing we haven't thought of. Believe me. We have tried it all and are not giving up.
Last week was pretty hard. I kept praying that people would be gentle with my heart because I knew I needed it. I was lucky to be surrounded by so much love and understanding. Constantly I was lifted and reminded how special the people in my life are to me. How much these relationships keep us lifted and supported during some of the scariest times.
Kayla's weight at one point had dipped down to 35 lbs. As a parent, I can not even explain how hard it was for me to look at my child who is almost up to my shoulder in height and see her at that weight. Kayla has been a very lean girl her whole life. She has always been 50% in height and 25% in weight when measured at her yearly check up appointments. There was a point last week when my heart broke. We were having a garage sale with our friends down the street when Kayla said something that jolted me into thoughts, fears and feelings. In hopes to get some calories in her as is our constant battle around here, we had given her a Scandi-Shake (which when mixed with ice cream, peanut butter and a banana, packs a punch of 1200 calories! Kayla had gotten about half of her drink down when she "choked" on a teeny tiny peanut chunk. (Have I mentioned her very sensitive gag reflex?) We could tell by her breathing that there was no talking her down from that I'm going to lose it moment. There in the middle of the driveway, all of those glorious calories came flying out in an instant. I could see in Kayla's eyes that she was so disappointed in herself. We all told her it wasn't a big deal and that most of the calories would still be in her... but I could tell, she was taking it hard. She has only gotten sick two times since being home. We know that only one time it was a result of nausea. There is no one who is harder on Kayla than Kayla. Before long I found her sitting by herself with tears in her eyes. I walked over to her and put my arm around her tiny shoulders to see what was going on. "I'm just a bag of bones. You should SELL ME" she yelled through tears. Nothing could have been worse to hear. You can only imagine how my heart ached for the pain she was feeling. It was a very hard week for Kayla.
Friends were a constant source of support for us all as we tried to gain ground on our new normal. The kids were all trying to grasp the fact that Kayla isn't quite the same friend they once played with. Every one of them were exceptionally kind and understanding. I can only imagine how hard it would be to have this friend who now needs to stop and lay down so frequently. I just kept reminding them that this is only temporary! As the week went on, we continued to see Kayla start to thrive more and more. She diligently weighed herself every day at the same time and at each meal asked what she could have next. Days are exhausting as we are short order cooks! Constantly making each and every single thing that she asks for stopping at nothing to keep that belly stretching. I am happy to report that she is now 36.4 lbs. It's a slow battle, but we will win it. Between the nutritionists, mothers instinct and the billions of suggestions from everyone, I don't think there is one thing we haven't thought of. Believe me. We have tried it all and are not giving up.
"Just Dance" With Antonia... SO much fun with her sweet friend!
Dinner, Boating and a sleepover with Megan and Amanda
Nana enjoying the water fun!
Anthony & Amanda. "Love"
These two even had a pretend marriage ceremony before bed
Amanda gives the thumbs up to more speed while AJ hangs on for dear life
Kayla amazed us when she tubed for a LONG time ... and LOVED it once again!
Megan & Kayla. Yes, they are the same age!
A super memorable fun-filled trip to the Jelly Belly factory with Maggie & Audrey
And finally....
And finally....
A pedicure by our favorite girl, Vi!
There were even more fun memories that I wasn't on my A-Game enough to remember to photograph! We have been busy living, that's for sure! Tonight, Kayla is spending the night with her great friend Claire. We heard the incredible news that Kayla even ate more at dinner then her friend. hahahaha! See? Great strides. She's doing so much better... Mommy's heart is happy tonight. Sunday, we will have more fun celebrating Kayla's cousin's 8th birthday with a sleepover here and fun treats! We can't wait. :)
I have a few more updates to share, all in good time. I promise in the next post. It's big. HUGE really. Just finding the energy and the right words. I am close. For now, I am taking my happy heart to the comfy couch and putting the tootsies up! I have my first full day back at work tomorrow. Wish my feet and back luck! ;) Don't worry... I'm going verrrry slow! After 8 months of sitting, I don't have a choice. Good night all!
Saturday, July 14, 2012
Living Life In-Between
It's been a full week since our whole family have been back home. Even as I type this, it's hard to really believe. We have had a very busy week here though, not missing a moment! It is hysterical to watch as Kayla wants to eat at all of her favorite places and do all of her favorite things all at one time. I can almost see the wheels in her head spinning at full speed sometimes. I immediately went to Trader Joe's and stocked up on her/our favorite things. There is nothing like eating in your own kitchen. Somehow the smell of coffee doesn't bother her here at all. Probably because our windows are cracked and we have fresh air constantly flowing through the house. Cereal tastes better too. Even if it was the exact same cereal we had in Tennessee. All of a sudden, things just magically tasted better! Yay! So we just went for it. If Kayla was asking for a certain place to go and eat, we went! Anthony (now Monkey-Kong) is thrilled about all of this. Kayla is trying so hard to stretch her stomach again. Her weight is pretty much stable. It went down about a pound and now fluctuates. Our theory is that it's not sticking because she has been so active! We aren't too concerned because we continue to see her try! Today, we baked brownies together. While we were baking brownies, she was already planning her next meal. While the brownies were in the oven, I watched her devour 3/4 of a big cupcake that our good friend Mark dropped off last night! Yum!! Go Kayla Go!
Anthony had his 5 year check up and vaccinations so he is all ready for Kindergarten! Kayla begged for a shot, but they wouldn't give her one. I am telling you, she is one crazy child! Who does that???
My car is finally in route from Memphis. I am so grateful to some wonderful friends there who made it possible for Denny and Kayla to fly home on the 6th and not be stuck there because of a car! They wouldn't have been able to leave until yesterday if it weren't for those incredible people.
Life at home is surreal. Minute by minute. Day by day. We are so grateful to be back and yet so afraid to get too comfortable. It's a torturous thing to live life in-between these scans. Never really knowing if life will ever be flipped on you yet again. It's so easy to just try and say to yourself not to waste the time you are home thinking about the what-ifs and that anything can happen at any time anyway, but it doesn't help. I know that in time it will get a little easier, but for now it's just really hard. I just can't imagine life without this.
One thing I do know, we will never ever let go. We will never ever take this for granted.
Friday, July 6, 2012
One VERY happy little girl
Today was probably one of the best days of my entire life. A day our family will cherish forever! I left the house bright and early as the Hulk and I drove into San Francisco to finally bring the rest of our family home. The first thing Kayla said as we drove onto the freeway was, "I'm starving. Can we please go to Tommy's Salsa?" Um, YES! Of course we can!!! So, off we went. We knew that we had some verrrry excited friends waiting for us to drive up our hill, so we gave them a heads up to meet us for some good ol' Mexican! Ahhhhh. HOME.
Right now the kids are sound asleep in their own beds. My heart is happy. I won't update daily, but I will for sure keep everyone in the loop as to how we are doing. Right now, we just have so many things to check off of our "when we get home list" now that we are all finally here. Thank you all for the sweet messages and continued support. This journey is not over by a long shot, but we will get there. One day at a time! For now, we will just enjoy this feeling while it is here. I am not about to waste one second of it! Good night all!
What a WONDERFUL reunion this was!
Next stop on the agenda was to head straight to Meow-Meow
The rest of the day was filled with playing, laughing, hiking up the hill (with a bag of snacks in tow).
Kayla is determined to get her muscles strong again. She and I have both noticed how out of shape we have become now that we are back home with all of these stairs. I have not seen her eat this much in forever! What a wonderful and happy feeling. She was climbing up onto the counter to get her own cup and pretty much helping herself to anything she wanted. For whatever reason, Kayla just wouldn't do that in the apartment no matter how much we told her we wanted her to. So, it was great to see that she was playing, but frequently stopping for lots of snacks! Mid day she requested a visit to Tuttimelon which is a local Fro-Yo fave. She had coconut ice cream with sprinkles, chocolate and marshmallows. Oh man! This kid is HAPPY! Thriving. LIVING. I can't wait to rave to her team of doctors (especially her nutritionist) who always seemed to doubt that Kayla could do it on her own. I can't wait to brag about how again we were right... she just needed to be home. Right now the kids are sound asleep in their own beds. My heart is happy. I won't update daily, but I will for sure keep everyone in the loop as to how we are doing. Right now, we just have so many things to check off of our "when we get home list" now that we are all finally here. Thank you all for the sweet messages and continued support. This journey is not over by a long shot, but we will get there. One day at a time! For now, we will just enjoy this feeling while it is here. I am not about to waste one second of it! Good night all!
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