Tuesday, July 31, 2012


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!!!!!!!

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.


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.

"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....
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

Look at those tiny baby hairs sprouting. I can't wait to see those fabulous lashes again! Oh how mommy has missed them :)

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!

Watching the kids swim next door in Cheryl's pool has been by far my favorite moment since being home. Watching not only the joy in Kayla's smile as she was able to fully submerge for the first time, but to see that she hadn't forgotten a thing was incredible. Kayla swam the length of the pool within minutes of jumping in. 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???
Anthony is luckily still one very happy and healthy boy who sees perfectly and hears perfectly. His heart is strong and his mind never stops racing. He is now subtracting, adding, counting by two's and tens. Yet he doesn't know the alphabet. So he's a numbers guy. I can't wait to watch him blossom even more this year. After his "shots" we decided to go out for some ice cream!

This is a combo of Kayla's two favorite things in life. This picture will forever make us think of our sweet girl. (she really loves meow meow to share her special blankie with him)

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.
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!

Thursday, July 5, 2012

Waiting for my other half

There are so many thoughts in my head right now I feel like I might burst!  The last few days have been a blur. A total whirlwind.

Tuesday evening, we sat downstairs in the Sean White room watching 4 very good friends play games together. You would never know that these friendships had been formed by such horrible circumstances. Not by the way these kids were laughing and carrying on. I sat with a dear friend, who if it weren't for this experience, I wouldn't know.  On one hand there was a peaceful calm that came over me. At the same time, I felt such a heavy tug at my heart.  I felt for so long that our time in Memphis would never ever end and there it was, our final night at the Target House. I tried to take in every detail of the room and was just so overcome with appreciation for this incredible place that became our second home to us for 8 months. 

Wednesday, July 4th. Time to go home. Only, I had no idea how emotional this day would be for me. Driving down Poplar and leaving the security of the gate filled me with so many different emotions.  It was unlike anything I can describe. Acceptance, anger, anticipation, happiness, fear, sadness, surprise, hope, wonder, sorrow, desire, anxiety, expectancy, panic. It was very overwhelming and I pretty much just sobbed the whole way to the airport. As always, Denny was there to comfort me and somehow found all of the right words I needed to hear to allow me the strength to get through yet another really tough day. Once we boarded the plane, it was full speed ahead. No time to look back and wonder what our futures would hold. Not with a happy 4 year old tugging my arm all along the way.  

Anthony was his normal happy-go-lucky wonderful self. The easiest traveler ever. My partner in crime. He had a blast on the plane and my only complaint was that during the first plane ride to Dallas we were experiencing some pretty bumpy turbulence. Anthony has no concept to my fear of air turbulence and explained in great detail how that meant the plane was about to fall from the sky and crash. Luckily it didn't.  When we first arrived at the airport in Memphis, security asked him what his name was. Of course, this is a safety precaution to make sure he is in fact supposed to be boarding a plane with me. And of course, Anthony replied with, "Hulk".   When the security guard asked a bit more sternly, "I really need to know your name". Anthony stomped his foot, looked him square in the eye and yelled out to the crowd that was now watching, "I said, I AM THE HULK". I just looked at the guy and said, "Look, he's not going to budge. Sorry." And off we went.........

To make an already incredible and emotional day even more amazing.... Anthony had the surprise greeting from his girlfriend, Amanda!

Once the house was quiet, I sat on my couch and just took it all in. For hours. The quiet hum of the air bubbles in our fish tank. The grooves in our textured ceiling. The fact that all of our windows were open. The feel of the cool fog rolling in and cooling the house down as only the bay area fog can do. Sleeping in my own bead was the closest thing to a slice of heaven that you can even imagine. For the first time in what seems like a lifetime, I woke up without my back aching. I was so excited I couldn't keep sleeping though. Somehow, 4 hours of sleep seemed like enough. Being home was that sweet!

Today was a very emotional day. With each article of clothing I unpacked, it unleashed a new fear. The worst was bringing the suitcases back up to the garage. It was like ripping a band-aid off. I threw them in very fast. I can't keep going to the what-if's. It's not good. I am determined to try and just accept what has been dealt to us. Live in the now. Not plan too far in advance. Day by day. Soon, once my family is reunited and we have a chance to process all of this, I will begin to think about work again. I just need to see my kids home playing. I need to see Kayla start to thrive again. Right now it's just way to painful. Way too raw. Adrenaline has carried me this far and I am aware at how very fragile I am. I know I will get through it. Somehow our human bodies and minds are incredible that way. I will continue to surround myself with positive people and energy and deflect all negative waves. I was tested tonight. By someone I would have never thought I would be tested by. I have learned that I am a lot stronger then I actually give myself credit for. I am not going to give into the toxic conversations that once would have consumed me with such inner emotional warfare. I refuse to give even a small part of what precious energy I have into trying to hold someone else up. So, I wont. Control is something that has been ripped from me. I am going to take it back one tiny thread at a time until I begin to feel whole again. It will be my new normal. It will have to do.

Today Kayla's central line was removed. I will go into more details on that soon. I am too exhausted tonight.  Tomorrow, my other half will join us here at home. I am sure a whole new wave of emotions will hit me, but I am not scared. Denny will be here to hold me up the second I begin to slump. I look so forward to watching Kayla and Meow-Meow cuddling. I can't wait to see her joy tomorrow. That will make the world seem a little more right again. Now the healing can truly begin.......

Tuesday, July 3, 2012

Scan Update

Unfortunately Kayla lost more weight. Fortunately, it will not slow down our plans of getting her home!

Kayla's Spine MRI and LP are both CLEAR! NED. Hooray!!! Even with the weight loss, they are confident getting her home will only help increase her "normal" appetite. Dr. Gajjar asked, "So, when do you want to leave?" Gosh, those are beautiful words. Tomorrow, the hospital is closed (except for the med room which we will not be visiting) so nothing will happen. Thursday, there will be a final assessment with OT and then Kayla's line will finally be pulled. She will be swimming in about 2 weeks! We can't wait!!! Just wanted to pass on this fantastic news and thank you all again for your constant love, support and prayers. You have all kept us lifted and made us remember that No One Fights Alone.

We will be scheduled to return to St. Jude in 3 months for a repeat of these scans. I pray for patience as I try and deal with the upcoming scanxiety I will for sure experience before each and every visit back here. I pray for a protective shield to keep all negative waves away from me and to somehow keep my filter as I deal with returning to the real world and leaving the bubble of St Jude and the friends I now consider family.  For those of you who always have found a way to know just what to say and how to be a constant emotional support to us, we can't wait to thank you in person! It truly is an invaluable gift.

Monday, July 2, 2012

Monday, Day + 19

What? Is there something on my face?

Ok, where did I leave off? Oh yes, Thursday.  Well, exactly what I described would happen with Kayla while on TPN happened. We hooked her up (ok, Denny hooked her up) and almost immediately she started feeling sick.  All night long Kayla got sick with the majority being in the morning.  When we got to the hospital and to A/T, I knew the scale would prove my theory. Sure enough, her weight went from 18.6 to 18.0. So, not only did she lose it all from getting sick, but how can you eat or drink when you feel that awful?  So, we had high hopes to change minds on Friday.

Friday was a very busy day. Kayla had her MRI of her spine bright and early.  We had camp and school.  The day finally ended with the all exciting LP (lumbar puncture).  Kayla had been NPO all day for it because it has to be done under sedation, ouch! Lizzy our wonderful RN from E came in just before Kayla was asleep to assess Kayla because she would be performing her LP.  I took my opportunity to let her know how our night went. She looked at me and agreed, "we have to get that TPN gone!" Soon after, Den got a call from specialty pharmacy letting him know that there would be no more TPN! Yay!!! Now, it would be up to us to keep a detailed food diary and prove that Kayla could do it on her own!

 This is Kayla FREEZING waiting for her Lumbar Puncture and wishing it was her line removal!

We finally returned back to the apartment at 3:00 and Goldfish crackers were requested. I have to admit, Denny and I kept looking at each other a lot wondering/hoping this would be enough to get us to where we needed to be by Monday. We need to satisfy nutrition! The normal healthy mom would die seeing what she was eating all weekend. But now, I will take anything! I have to say, she made huge progress on Sunday! We noticed she was making a huge effort to ask for different foods and actually eating bigger bites. On Friday, she would take 4 nibbles to get down one gold fish cracker. First the fins, then the body in half. It drove us crazy, but we had to refrain from saying anything to discourage the progress. It was torture so we just tried not to watch.  I couldn't wait to see if her efforts paid off and how much.

Saturday, we got to go and see the new movie Brave in 3D! Kayla had been so looking forward to this one. It was excellent! We had a fun time and got to get out of the 105 degree heat! We got Kayla to agree to try a quesadilla for  dinner at what would probably be our last time at El Toro Loco (Tommy's here we come!!!). Well... that didn't go so well. She ended up sleeping through dinner. Well, we wouldn't just quit this fight that easily. We got it to go and made her stay up until 10:00 until it was at least 1/2 way finished. She was so exhausted but learned a valuable lesson that we will not give up on our battle to get us home. It's all up to her at this point. On Sunday, Kayla admitted that she was eating so well because she didn't want to be up late getting her calories in again. Gosh, we are tough parents! ;)
Brave girl watching Brave in 3D
 Sound asleep after the movie
 Our sweet, ALMOST 5 year old boy!!! He is such a trooper.

Sunday we relaxed and played and enjoyed the A/C. It's been way too hot to go outside unfortunately.
 Anthony, Marcus and a new friend playing Foosball

Enjoying a very lazy Sunday

Today not much really happened. Unfortunately, I can't really give any updates on the medical side because we won't know anything until tomorrow. I think that the nutritionist was happy with the food diary. They didn't weigh her though. That will happen tomorrow. Fingers crossed she put on some of the weight she lost!  Kayla got to participate in the Christmas in July photo shoot today. She was in a very puffy white dress in front of a Christmas tree and surrounded by presents. These pictures will be on cards thanking donors for making our Christmas possible. It is true, without these donations, many MANY children would not survive. So for those of you who have donated here, THANK YOU! The pictures looked great. Kayla was wiped out after and quite grumpy.  She is just seeing that we are almost finished here and annoyed that things aren't moving quicker.  

Tomorrow we will meet with E clinic to discuss Kayla's blood test results to see if she is still "ok" to be off of TPN. Also, this will let us know if we are on track to go home or if she is needing any additional things before we leave (like vitamins or fluids).  Once we know all is good, the last thing is removing the central line. We all can't wait for this!!! You know that will be one very happy update from me!   Since it's the holiday week, flights are filling up fast. St. Jude will not book the flight for the patient and a parent home until the day before they are set to leave. They don't want to get stuck with the change fees for those last minute things that can arise if they can help it. Since it's a holiday we decided not to risk the other two of us being stuck here in a hotel or something waiting for a flight to open up so we opted that Anthony and I would go ahead on home first. So, we fly home Wednesday and arrive in the evening. Wouldn't it be great if we can see some fireworks from in the plane? You know we will be looking for them! What a welcome home party that would be!  It will be so nice to be able to pick Kayla and Denny up from the airport soon after and all be home together... finally!  We are almost there! I can taste it.........