Activity #29

First, let me apologize for letting 7 months go by without a blog. Second, let me say that the process of recovery continues for our little girl. She has been home for 7 months, and still has a tube for feeding. She is swallowing very tiny pieces of soft foods, and is able to drink, but her main nourishment is still provided through her NG tube. She chokes easily, due to the scar tissue and damage in her esophagus from the radiation. She continues to appreciate the little victories, and we are cheering her on along the way.
I will  start with the most recent "activity" I had with Hayden, rather than trying to go back 7 months in this lame memory of mine. Sunday was a fundraiser for various charities, including a camp for children with cancer, called Walk n Rock. It began with a walk, and ended with an evening concert with KISS at Raley Field. Hayden's parents, Kirk and Jennifer Whelan, participated in the walk, and wanted to enjoy the evening concert, so Aunty Kristen got the grand prize of hanging out with Hayden for the night.
Hayden and I always have fun together, and I enjoy every moment I spend with her sweet spirit. As soon as she arrived she announced that she was hungry, so I made her the macaroni and cheese she brought with her. This meal should always be a "no-brainer" with her, since it has been on her all time favorite list since she first learned to eat. Unfortunately, as I described earlier, eating is a challenge, no matter what the food. I sat and watched her struggle to chew and swallow a total of 10-12 noodles, and that was it.We were done with dinner. Thank goodness for ice cream. No surprise that she didn't seem to have any problems swallowing that!

To wind down the evening, we retreated to my bedroom to chill on the bed, and watch a movie. She chose a Land Before Time sequel on Netflix, and lasted for about half of the movie. I watched her sleep, and was reminded how blessed we are to have her home, on the mend, and blessing our lives every day. One thing is certain,  I will never take her life, or anyone's life for granted again. (one of the gifts that cancer bestowed on me). 

It is safe to say that all of us that know Hayden, have come out of this a different person. Life is never the same when you have seen someone you love, suffer and survive through such an ordeal. And that seems only fair, because Hayden has had to endure so many changes and consequences of this heartless disease. When I see her longing for what she has lost (her long hair, her ability to eat her favorite foods, the ability to play hard and not tire so easily, the classmates that left her behind when they graduated from 6th grade without her) it breaks my heart. If there was any way that I could restore her life to the previous version, I would do it for her without another thought. I can't say that I would do the same for my own life. I am grateful for the eyes I see with now. I know that everything that happens, God orchestrates with reason and purpose, and I know that the everything that I learned throughout this process was to benefit my life, and those whom lives I will touch. The change in me was very hard earned, and I will "wear" this badge of honor with much gratitude and all the grace I can muster.

Thank you, Hayden for giving me all of the gifts that you have. I am so sorry that some of them have come from your suffering.  I hope that I can always be there for you, and I will try my hardest to glean all that I can from your amazing life. I love you so much, sweet girl.

Activity #28

Hannah Montana? Is that you?

Home again, home again. WE ARE DONE WITH CHEMO! Chemotherapy treatment number 7 was decided against for a number of reasons, and we couldn't be happier that Hayden is beginning her slow recovery process at home.

Hayden has been home for 5 days, and as most girls, made it clear how much she missed "dressing up" in her clothes by trying on that many outfits PER day! Every time she went into her room, it seemed she emerged with an new look. It's quite possible that spending 36 days in one's pajamas can have a lasting effect on a girl's sense of style, and she wanted to make sure she had not lost hers!

One of the things she has truly missed is playing with her dog, Lucy. They are very close, and I think in many ways Lucy understands things about Hayden that we can only try to. One thing that she hasn't missed, and that seems to be the biggest hurdle these days is EATING. She is still sporting her feeding tube, and is struggling to drink or eat anything by mouth. We are working hard at overcoming this as it is a huge obstacle to conquer. She has always been a "picky" eater, but this is extreme, even for her. She has said numerous times that when she does start eating she would like a bacon, cheese and ketchup sandwich. Not my first choice, but if that is what she wants, then that is definitely what she is going to get!  At this point we would be happy if she would eat the bacon, cheese OR ketchup!

Time to pick up big bro at school!

As I am typing this blog, Hayden is hanging out on my couch, doing one thing she loves--playing games on  www.webkinz.com.  If you don't know about Webkinz, then you don't have a child in your life. She currently has at least 38 Webkinz, with no end in sight. If I were into stock investments, this would be one to consider.

Surprisingly, it has been an adjustment to not have the hospital as part of our daily lives. As strange as it seems, it became a habit to factor in "hospital time" into daily life.  I have caught myself  planning out my day with the hospital visit time in mind,  before I remember that she is no longer there. It is a phenomenon that I am not anxious to repeat. I would be happy to never have that as part of my life again!

 Here's hoping that activity #29 is all about EATING!

Activity #27

As we begin number 6 of 7 chemotherapy treatments tomorrow, I know that Hayden would want me to share this, her favorite song with you.  Not so coincidentally, I have heard this song almost everyday for the past week.

Hayden can be found singing  these words, at the top of her lungs, every time it comes on her Ipod. She even shared it with the music therapist that visits the kids at the hospital, singing it, maybe a little off tune, but without shame as it played on her Ipod. To her credit, she knows that the words are all that matter! I know that she must know these words are the truest she has ever heard, because of the way she lights up when she hears it, and because of the person that she is.
Thank you for your prayers and thoughts for our sweet girl, and we hope that this song blesses your life --Please CLICK HERE

Activity #26

(Hi, this is going to be a different format, because Hayden is going to talk, and Aunty is going to type what she says. This was her idea for an activity today while in the hospital).

"This blog is about my family.
My dad is handsome. We do everything together. Like: coloring, crafts, webkinz, and we sing Justin Bieber songs. He works for Kaiser. He tells everybody what to do. I love him so much. He plays with patches.

My friend, Rachel Wick is cute. We eat snacks, watch movies, eat popcorn and we eat candy. For lunch we eat top ramen, pizza rolls, chicken nuggets, tater tots, bacon and eggs. For dinner, we eat tacos,and bean and cheese burritos. The next day for lunch, we eat Chipotle--where I get pinto beans, a side of rice and a plain tortilla and a soda. Sometimes we play with Ryan.

Me and my mom watch TV, listen to Justin Bieber, and we like to snuggle. We talk to patches. We make dinner and take a bath and we watch a movie on Netflix. My mom is pretty and cute and beautiful. She is an excellent mom.

My brother Spencer calls his girlfriend, goes on the computer and does homework with her (geometry, science, and social studies). He runs away from my dad when they play. He plays soccer, hockey, and water polo. He is a good brother because he is nice to me and he loves me.

My sissy Sienna has a daughter named Izabella. I love her so much. Sometimes Izabella screams at me and hits me and she doesn't know what she's talking about. We play on Webkinz. And we giggle together, and watch movies. Izabella runs out the door  and yells for Grandma.

My dog Lucy plays ball and she barks at me. She barks when she is happy I am home from the hospital. Lucy sniffs the food when my dad cooks dinner. And she goes outside with my dad, and she smells chicken and steak on the bbq.

I like to play with Webkinz, run up and down the stairs, go outside and see rainbows, and play with my friends. Having chemo sucks. When I am done with chemo I get to go home. When I go home I am going to play with all of my friends, watch movies, eat popcorn and everything I love. I am going to have a cheese, bacon and ketchup sandwich and a hamburger from McDonalds. I am going to go to the movie theater and eat popcorn with no tube in my nose.

That's it.

Activity #25

In the past 2 months, there have been a lot of changes, and yet, in some ways, none at all. I thought I would start with a picture of Hayden "coping" with the trial at hand.  Hayden has an amazing way of coping with the stress of chemotherapy. It's nothing that some good music, her favorite stuffed dog Patches, and a cool towel over her face can't help with!

Radiation is done, we are down to only 2 chemotherapy sessions, and Hayden is now a teenager. Probably the scariest of all news is the last! I cannot believe the girl is 13! She definitely has the hormones of a teenager, as her greatest desire is to kiss a boy. If her BIGGEST wish were to come true, it would be Justin Bieber as the recipient. However,  it is no secret, that she would settle for any boy at this point. All kidding aside, she loves all things "TEEN". Her Ipod touch, Justin Bieber, Taylor Swift, I-Carly and the latest addition, her cellphone! Yep. They did. Her parents got her a cellphone for her birthday. I am happy to report that I have, so far, been spared the 6 am phone calls. In true Hayden fashion, she knows how to balance her innocent nature by also having a collection of 62 WEBKINZ. I am hoping that she will never grow too old to play with them.

The last day of  her radiation, she was met at the clinic by many caring and beautiful people. They were there to support her by giving her balloons that said "radiation" on them. She "let them go" as a way of celebrating the victory of completing this leg of the race. This was a hard day for her, as she wasn't feeling well, but she still tried to put her best foot forward for everyone. Without complaint, she met us at Sonic afterward, even though she could not eat a thing, and hasn't for months. She sat there patiently watching everyone eat their lunch. 3 hours later, she was feeling so poorly that they readmitted her to the hospital, her  "home away from home".

She did get a slight reprieve from chemotherapy this month, as the Doctor let her delay it for one week.  In this time, she was feeling the best she had in months, and got her long awaited hotel stay. She didn't care where they went, she just wanted to stay in a hotel. To her, hotels mean vacation, and vacation is not being home or in the hospital. For 2 short days, she had a summer vacation, and it was very good for her family to get away from the "norm" that has become their life this summer. As always, the swimming pool was her favorite place to go, and if she was eating, room service would have been her first request of the day! The girl knows how to live large, that's for sure.



(R=swimming with dad,
L=dipping
her feet in
the Jacuzzi)



All things considered, we have many blessings to thank God for, and we do! He has been our constant source of strength and we find our rest in Him. I do not, for the life of me, know how people can go through something like this without Faith in a power larger than themselves. I would be remiss if I did not mention the many angels on earth that have been there as His right hand during this time. You know who you are, and we thank you from the bottom of our hearts. Whether by providing a meal, organizing the meals, buying and wearing a "TEAM HAYDEN" bracelet, visiting the hospital with Starbucks in hand, sending gifts and countless cards and letters, or just by being available to do whatever asked, you are all amazing. We couldn't do it without you, and we will always do our best to "pay it forward" when given the opportunity.
It is evident that most people cherish the opportunity to help other people when given the chance. During times like this, it is unfortunate that the true nature of some will be revealed as selfish and uncaring. However the fact is, we are mostly encouraged and uplifted because the majority of humankind is filled with love and generosity. This was clear and evident on Hayden's birthday when she received so many gifts and well wishes.

 Although it was spent in the hospital, I think it is safe to say that with all things considered, it was a pretty darn good day for her. Her mother decorated her room the night before so that she would awake to a very festive and colorful room.

She received cards and gifts in the mail, and the hospital staff was very generous and kind with gifts, song and birthday wishes. I finally gave her the charm bracelet with the charms that I have purchased for her over the years to mark various milestones in her life. She wasn't too excited about it, but I think the older she gets, the more she will appreciate it. The funniest comment of the day was when one of the nurses proclaimed that Hayden was now a TEENAGER, and Hayden pointed at her mom and said "she's scared!". She couldn't have said anything more truthful at that moment in time. As happy as we may be for her, it is bittersweet, as we will always remember a "little girl" named Hayden Faith Elaine Whelan
Happy Birthday Hayden. I love you.

Activity #24

"22 Days in June, and Feeling Goopy". This is not a song title. It is Hayden's life last month. Out of 30 days, she spent 22 of them in the hospital dealing with the side effects of chemotherapy and radiation. 3 of those days were "scheduled" hospital stays, the rest were just bonuses in her already, exciting life. To combat nerves and nausea (also not a song title) Ativan is the drug of choice. In her words, it makes her "feel goopy". For those of you who need help with this word, translated, it means GOOFY.
 
Today is the 4th of July. It was a  tough day. In years past, decorating and riding in a truck for the  4th of July Parade, wearing matching 4th of July t-shirts with her girlfriends, and a block party were some of Hayden's favorite activities. This year, laying in bed with a cold rag on her head, a feeding tube in her nose, and feeling "goopy" while watching I CARLY was her reality. Throughout the day,  her favorite people wandered in and out, sat on her bed for awhile, and visited, and some even watched full episodes of I Carly with her. Outside, the neighborhood kids ran around having water fights, lighting fireworks, and eating cupcakes. Next year, one of those kids WILL BE Hayden! We are counting on it. Independence Day, indeed!

In the meantime, Team Hayden will soldier on. We wear bracelets with a princess crown on them, and proud of it. Join us if you will, and we will all celebrate with fireworks next year!! (for more information on how to purchase Team Hayden bracelets you can contact Kristen).

Activity #23

As Mothers and Fathers, from the day our babies are born, we dedicate our lives to protecting and caring for them. An instinctual air comes over us, and we are never the same again. If they get sick, we do everything to make them feel better. If they fall down and bleed, we do what it takes to heal them. If you want to to tear a parent's heart open, make them the decision makers of HOW pain should be administered to their child. Not IF, but HOW, and WHEN. Better yet, have them be the ones to inflict the pain.

One of the many things I have had to watch my sister and brother-in-law do to make Hayden "better" is them giving her a shot that she has to have for 10 days after she has chemotherapy. I don't pretend to understand all of the "whys", but unfortunately, the "whats" are not passing me by without notice.

 I have been on the sidelines while she received a couple of them, as cheerleader, assistant and Aunty, but have yet to have to do it (even though I learned how). This "pleasure" has so far been reserved for Hayden's parents. This alone is enough to make a loving parent want to scream. Pair that with the chemotherapy that is nothing short of poison, that they have had watch drip into their daughter's veins, and you can only imagine.

On a well needed break from the hospital yesterday, I went with Jennifer to the mall to buy a father's day gift. While there, she saw a pair of jeans she really liked. As is the trend, they were ripped and distressed looking...we joked that we could do that to some of our jeans, and we should just borrow some of the chemo drugs and pour them on the pants to do the trick. This is not too far from the truth. If you have ever seen the side effects of these drugs, you would agree.

The "dessert" in this regime is radiation. This has been the evil twin to the chemo, as it has created complications which have kept Hayden in the hospital during what should be her "off" days before the next round of chemotherapy. Since she is still in the hospital, she must arrive to the radiation center by ambulance. This was an experience that she disliked very much, until she realized that the ambulance drivers and paramedics that assist her are primarily young, handsome men! I mean really people, she is almost 13, and she is sick, not dead! She has a couple of favorites, and not coincidentally, they are very cute. To top it off, when she gets to the appointment, they are usually playing her favorite Justin Beiber song while she gets her treatment. She lays on a board and has her face screwed down to the board by a mesh mask that she has to wear. All of this takes place in a huge, loud cylinder that would scare a perfectly healthy adult. The reward for this is a throat coated with sores that keep you from being able to swallow anything. And when that happens, the prize is a feeding tube shoved into your nose and down into your stomach. If this doesn't sound like enough fun, just about every night, you have so much stuff that doesn't belong in your stomach, that you get to throw up not only the unwelcome contents, but the feeding tube as well.To top it off, just in case you forgot how fun it was, the real BONUS PRIZE is that you get  to have it inserted back into your nose!

I would be remiss if I did not point out that given the opportunity to complain, she usually doesn't. Instead, she worries about us.  Makena, my daughter,  got strep throat last week, and one of the first things she asked me when I came in to visit her at the hospital was how Makena was feeling. When I said better, she said an enthusiastic "GOOD!" and looked noticeably relieved. Even on a day when she felt good enough to play a Sponge Bob operation game, she could be heard comforting Sponge Bog while she took out his funny bone. "It's gonna' be alright, you're done! Is it hard buddy boy?"

To bring it all home, when she made her Father's Day card for her dad, she wrote: "I love you. I am sorry you feel bad about me." She is worried about us worrying about her. Really? Yes. Really. That's Hayden. Her heart is bigger and purer than could be imagined, and one of the many reasons you can fall in love with her in an instant. She gives our world a 4th dimension, and we wouldn't want to live in a 3 dimensional world again for all of the riches of this earth. She makes us laugh until we cry, and cry until we laugh.

And sometimes she just goes into her brother's room, and puts on his clothes just because she can. Complete with beenie, shorts, t-shirt, and shoes!

On a "good" day, after being subjected to the many tortures of her hospital stay, she was found in this garb, warning her Webkins friend that he was "going down!" Whatever works to get your frustrations out, baby girl. Whatever works! Trust me, if we could stand in her stead right now, and take the punches for her, I think that there would be a line of volunteers. For whatever reason, it falls on her to survive this with her heart still in tact. Why? Because she can handle it, and still see the world as a good place to live in. I can't say I would be as gracious. Another of the many lessons that she has taught me. I have so many more to learn from you Hayden, before I can even begin to be close to having your amazing strength and attitude. So many more....

Activity #22

"Will I still be a girl when my hair falls out?"  Questions that have probably been asked before by other children, but this child  is ours. This experience, this trial, this victory, this struggle, this unimaginable ordeal...all ours.  We get to own this one. Which means we are the captains of this ship, right? We can create the outcome?! If you are a person with FAITH in the one and only God, the God that offers us the victory if we have faith the size of a mustard seed, then the answer is YES! And if we claim this faith, then we have no other option than to believe. And when the outcome isn't exactly as we desired it to be, we still have to believe it was God's will, right? Right?! RIGHT!

Hayden starts chemotherapy and radiation on May 3, 2010. She has endured 2 surgeries to remove the tumor that is invading her life, had 4 baby teeth removed under anesthesia (because all dental work must be done prior to chemo), had surgery to put the port in that will deliver the chemo to her little body, been shot with dye for a bone scan (which we are so grateful came back clear today),an appointment with the Radiology Department,  and on Friday is going to be getting a 2 hour MRI, for which she will once again have her "under" anesthesia. So much preparation for the next six months of the unknown. I believe in many ways, she is doing a better job at dealing with all of this than we are. She gets it. She gets that there are people who care about her, and will be there for her. She understands the love that her family and friends feel for her. She not only understands it, she strives because of it. Truth be known, without her, we wouldn't know the kind of love that we love her with.

As you can tell by the question I began this post with, she is just a normal preteen, concerned about her hair. And what beautiful hair she has. The color of pure sunshine, spun from silk. Her mother is constantly getting comments about the beauty and color of it. Thank goodness, there are organizations that have addressed this concern, and now make hats that have the patients real hair attached to them. We are hoping that this will make this element of her ordeal a little easier to deal with--http://www.hatswithhair.com/

So the ship has set sail. The course has been charted. We have signed up to be the first mates. God is our Captain. We believe this to be true in our lives, and for this journey, we will claim nothing different. Pray for us. That we may have the strength when it is needed, be the soft place to fall when Hayden needs us, and be capable when we need each other. We don't know what to expect, but we know that we aren't alone. It's going to be a wild ride, so put on your life vests.

Activity #21

OBLIVIOUS?! NOT AT ALL...Hayden's spirit is relentless. She is a bundle of energy with a dash of what my elders referred to as "piss and vinegar". She never stops with her questions, especially pertaining to food that she wants to eat but is being denied. I say that she acts oblivious to her looming health situation, because she continues to be exactly as I described. But, at the same time, she has the astute and keen observations and comments of a Yale professor. She asks questions and responds in ways that continue to amaze, entertain and delight us.

The recipient of these gestures is her ever loving, tirelessly giving, and amazingly empathetic brother-Spencer. Spencer is 15 years old, and Hayden is 12. This combination makes for your typical preteen to teen sibling interaction. It is sometimes sweet, but most of the time antagonistic. There is nothing different that goes on between them, then that which is going on in most households across the world. Big brother picks on little sister, and little sister worships and hates big brother simultaneously. I know this sounds impossible, yet if you have ever had a sibling, you understand perfectly the paradox.

The best way to bring this scenario to life, is the most recent example of their interactions. If you are looking for politically correct phrases or acceptable descriptions, this blog is not for you. You have been fairly warned:

A typical Saturday for Hayden involves hours of play with her best friend Rachel Wick. Rachel lives 2 houses down from Hayden, on a happy little cul-de-sac in Carmichael. When Rachel is otherwise engaged, and unavailable for such, we all suffer! None more than her immediate family. This past Saturday was no different. As her mother said, in nice terms, Hayden was being a "pill" because Rachel couldn't play with her. The doorbell  rang, and Hayden thought that this marked the end of her tragedy because Rachel had come to play. Much to her dismay, when she opened the door, it was her brother Spencer who had forgotten his key. He was met with Hayden's disapproving glare, and these loving words--"it's just the brat!", SLAM! Spencer then re-opened the door to come in and countered her not so kind words with "I love you too, Hayden!". Well, not to be outdone, Hayden replied with her favorite comeback-"Shut up Fagot!". (I warned you.... Yes we discourage the use of this word constantly, and as a disclaimer we don't approve of it as a whole. As in most cases, that doesn't seem to matter when Hayden is in one of her moods.) So very disappointed, Hayden stomped up to her room in tears, with every stomp, the "unmentionable" word being reiterated!

What's a brother to do? What he usually does. Laughs, shakes his head, and continues on with his life. Despite his own lack of modesty at times, Spencer is amazing. He loves Hayden, and has been her comfort, protection, love and  thorn in her side. Just as it should be. Here's to you Spencer! Keep up the good work!

Actvity 20

It's almost April. Hayden had her surgery to remove a tumor in her chest on January 12, 2010. If ever there was a reason to embrace the concept of "patience" this has given us one. We still don't know what the prognosis for said tumor is. Cancer? Not? We wait.

In the meantime, Hayden continues to be her usual amazing "self". She plays with her best friend down the street from her house, she asks for ice cream EVERY DAY when she gets off of her school bus, and she gives out her hugs to the lucky ones in her life. More recently, she has begun calling her mother "lovely". Her depth and intelligence surprises us every day, though by now, we shouldn't be surprised at all. An example might be her acute observation of 2 dogs walking down the street that most 12 year old children would recognize as just "cute dogs", she saw 2 "cute Spaniels". They were Cocker Spaniels. Exuuuuuse me, Miss Dog Aficianado! 

It is cliche to say that every day is a gift, but that is the world we are living in right now. We are having our own acute observations as we wait for the word from the experts that will determine our fate in this latest health battle. And we will continue to love our "little lovely" more and more with each passing day.

ACTIVITY #19

The following is Hayden's mom's FACEBOOK STATUS for 3/11/10:

When two out of three dentist recomend crest or colgate that's one thing but we now have two out of three pathologist saying my baby girls tumor is cancer. We are still waiting on the fourth from childrens Oncology group. I'm still hopefull but having a hard time, I never did like roller coasters.

We wait and wait and wait, part of us wanting the answer, and part of us wishing that limbo was the force that is  going to keep the cancer away forever. Denial. Call it what you will, I am not sure any of us are ready for reality. 


Sure, there is still hope that we won't be on the cancer treadmill, but it's not looking that way.


In the meantime, we pray. Not even sure what to pray for. I think that God knows that a mother's tears are prayer enough for now.

Truth be known, we would like to be the exemption. The Ones that beat the odds! But now....we wait.  One thing that we are SURE of is that we will not wait, worry or pray alone. Hayden is loved by many, and for this, we are thankful.

Activity #18

Please refer to Activity #3. OK. now that you have read that blog, we can all agree that today, Hayden cannot be described as a hobo.  Because today, courtesy of my awesome sister-in-law, Fina, she was the proud recipient of a pedicure at the Turtle Bay Resort.

Fina is the Director of Guest Services at Turtle Bay, where Hayden and her family are vacationing this week. Turtle Bay is located on the beautiful North Shore of O'ahu, Hawaii. One of my favorite places on earth. As a special treat, for a special girl, Fina arranged for Hayden to receive a pedicure. Those of us that  know Hayden, were cautiously optimistic about this upcoming adventure.  See, we know that if Hayden could be a hobo, so that she would never have to cut her toenails again, she would. However, much to our surprise, she emerged from the experience "pretty in pink", and none the worse for wear.

I think that the most amazing things about this experience was not the pedicure itself, but the visit that took place between Hayden and Fina. When Hayden realized that Fina was the sister of my husband (and Hayden's beloved Uncle Puppy), that was all she needed to know. As her eyes lit up, she made the connection, and insisted on a phone call immediately to connect the not-so-long-lost brother and sister. She called her Uncle Puppy, and would not let him hang up the phone until he talked to "his sister". They talked, exchanged a few brief words, and all was right with the world.

Fina is amazed at how bright and articulate she is, and proclaimed that if not for her features, no one would know she has Down Syndrome. That's right! She's amazing! And she is no hobo!

Activity #17

Hannah Montana wears a wig! And it seems socially acceptable, right? It just so happens that Hannah Montana is one of  Hayden's very favorite shows/characters of all times! Little did we know that there would be a day in Hayden's future when chemotherapy would be taking her beautiful, blond hair, and leaving her with the option to be just like Hannah Montana, and wear a wig. Never in a million years does this stuff happen to the people you know and love! Considering that Hayden is one in a million, should we have predicted this? Probably not. We usually don't wile away our hours by day dreaming about those that might get cancer in our lifetime. It's all part of this process we call life, I suppose. But the only way that I can manage my thoughts on this subject is by being in perfect denial until it happens. What ever "it" is. I will say that since the diagnosis, I have a continuous twitch in my left eye. People tell me it is a way to relieve stress and anxiety when our eyes twitch. So, maybe I am not in denial. At least my eye isn't.

The best part of my day will be going  to Hayden's house and presenting her with my found treasure of the week! A Hannah Montana Ipod speaker system that I found at a discount of 50 percent off~ I am so excited to give it to her, but mostly excited just to see her smile when she sees it. With Hayden, it doesn't matter what it is, if she likes it, you may as well given her a million dollars. Goodness knows, she has given us a million reasons to smile. Happy Saturday Hayden!

Activity #16

A day without Hayden is like a day without sunshine. True talk, true statement. Ever wandered around your day, thinking to yourself "something's missing"? I have. Lately, it is the fact that I haven't seen Hayden in 24 hours. Sometimes I find my car driving on automatic pilot towards her house, just to find out that she is at her bff's house down the street. That's OK. I get to feel her essence, see her jacket on the stair banister, or her latest piece of artwork, "To: Dad, Love: Hayden" on a chair. It's almost always a house with trees and a sun in the sky. Each year, the coloring gets a little better, but the message remains the same. She loves her house, her family, her life.

There are days when I walk into her house and she is glued to the 7 inch television that hangs under the kitchen counter. Not a word for her Aunty, maybe a quick "hi". That's ok. I get to kiss her head, and give her a squeeze. Sometimes it is met with a "please stop it, Aunty", and sometimes it is ignored. That's OK. I still got to sneak it in.

There are days when I walk in to a resounding, "HI! AUNTY!" and a big smile and a voluntary hug on her part! Sweet! Do I have my favorite times with her? Probably. Am I ever disappointed by their presentation? Never! After all. A day without Hayden, is like a day without sunshine. And the sunshine warms my soul.

Activity #15

If the worst of the worst, happens to the best of the best, then we should have seen this one coming---like a freight train. There is no other way to put it, no sugar coating, no politically correct grammar to hide behind. Hayden has cancer. The surgery to remove the tumor that grew back in her chest, once benign, is now NOT! I think that someone who has as many challenges as she has had, should be able to pull a trump card on something like this. Don't you? I mean, is it at all fair that she thinks that the surgery was the worst of it, and she still has such a long road to haul? I don't. Can I call "sub", God? Put me in. I'll play this hand for her. Please?! If I would, please understand that I would do it in a flat second. Not to be a heroin, but because it would be fair.

So, every moment, every day is to be even more appreciated and valued now. Opportunities are not to pass us by. Time to be spent together should be spent together. So... today, I called her and asked if she wanted to run and errand with me. Of course, that was all the motivation that she needed to get in the bathtub and get her hair washed (much to her mother's relief). I arrived to her house to find her squeaky clean, getting her hair done by her mom, and expecting a lunch date as well.

On the way, we sang, we talked, and we laughed. Towards the end of the trip, I told  her that I really missed my mom and that I was very sad last night. With all of the wisdom and innocence that is hers, she told me to ask God to let my mom come back from dying. I explained to her that God wouldn't do that, and she said that she didn't want to die, but if she did, she wouldn't have Down Syndrome anymore. The wisdom of a babe. In heaven we are all "perfect".  I asked her how she felt about that, and she said "good". We both understood what she meant.

Challenges. They are the story of her life. She looks different, she talks different, she walks different, she thinks different, and man oh man, does she LOVE different. And for that love, I would walk a million miles.A pure, simple, unfiltered and unexplainable love that you could ever be so blessed to receive. That is what you get from our girl. So I pray. Please God, let her always have Down Syndrome. Not because I want her to have challenges on this earth, but because she is already perfect, and I think You will survive without her. I cannot say the same thing about the ones she loves so perfectly. Amen.

Activity #14

There is a Walrus in her Dad's closet...or so she thinks. Sitting on the bed, she looks at her mom and proclaims that she is scared. Knowing that she has an upcoming surgery, her mother assumes that is what is on her mind. "Why, Hayden? Because of your surgery?" "NO! I think there might be a walrus in dad's closet!" With this girl, you just never, ever, let me repeat, NEVER EVER know what might be her next observation.

We are going to be up against another hospital stay on January 12th as Hayden has a surgery to remove a tumor that has grown back in her chest. Keep us in your prayers, and we will continue to report her progress to you. As of right now, we are happy to report that there is NO WALRUS in her dad's closet. Coast is clear on the walrus front.

Activity #13

Jennifer Whelan is Hayden's mother. Her Facebook status is another way that we are reminded of the wonder that is Hayden. Today, it reads as follows:

I was shopping for flower bulbs with Hayden yesterday she was trying to help me pick out what flowers to plant, I told her I wanted flowers that smelled good, she picked up a bag of bulbs and said smell these. : )

Activity #12

So, today my sister and her daughter, Hayden stopped by for awhile before going to Spencer's water polo game. Spencer is son and brother, respectively.

Hayden was enamored with my new parakeet. She sat looking in the cage for a long time, asking the normal questions we all would ask when meeting a yellow parakeet for the first time: "What's her name? Where does she sleep? Does she play with all of the toys in there?" After a few seconds of deep contemplation, she said she wanted a bird too. "NO!" exclaimed her mother, with no hesitation ,whatsoever. The next couple of minutes were spent revisiting the many "pets" that Hayden has helped to the "other side". Fish that didn't like living in a shoe, frogs that don't like to be held too tightly, and more fish that actually ate themselves to death after Hayden decided that it was better to give them all of their food in a yearly dose, rather than waste her precious time feeding them daily.

Moving onto the couch, Aunt, (that's me), was able to squeeze in a little snuggle time with her favorite 12 year old snuggler, Hayden Faith Elaine Whelan. One would think that this would be enough to make anyone's day, and it really was, until......it was topped by those two words that I live to hear: "YOU ROCK". Gee, thanks Hayden. I think you rock too!!!

Activity #11

Hayden goes camping---NOT!!!

It's Friday, and as we all know the school week is long, and we all get a little tired of the routine. For Hayden, her solution is to bypass her trip to school, and go camping instead. Or at least that is what she told her bus driver. All of this came to light when the driver called her mother to verify that Hayden did NOT need to be picked up this morning because she was going camping. "NO. Hayden is not going camping, and needs to be picked up this morning. Thanks for checking." When my sister asked Hayden if she told the bus driver not to pick her up in the morning because she was going camping, Hayden replied in a matter-of-fact tone, "Yeah, but it's OK, I'm not going anymore."

We are not too sure who should get the award today. Hayden, for her imagination, or the bus driver, for listening to a 12 year old who rides a bus for children with disabilities. Not much of a toss up in my mind.

Not to self: go camping, it's better than anything else I had planned today.

Activity #10

After the "sleep over" there is always a "morning after". In Hayden's case, the morning usually begins at 5am. Yes, 5 AM! Not that I wasn't warned by my sister's FB status a couple of days ago which is as follows: " woke up at 4:45am lights on Hayden not in her room found her watching TV downstairs, I said it's too early to be awake she said " I was getting bored sleeping, sleeping is not fun. Don't worry this is what I do." ( Haydens version of "this is how I roll")"... Lucky for me, her Uncle Peter intercepted her and directed her back to her pillow. OFFICIAL wake up time was 720am, and the before school preparation began. It's truly amazing that we forget so quickly the "routine" that is involved with this. Breakfast, getting dressed, packing up the backpack, brushing hair, brushing teeth,and finally, playing with the dogs.

Don't be alarmed, but Hayden is now married-----to Sammy, our dog. She asked him today if he wanted to get married as she was playing with him, and then promptly gave him instructions to "kiss the bride!". All of this happening while she was making him stand up on his back legs like a little person.

Finally, we ventured to Lightning McQueen for the trip to school. It is clear that the world is just full of Hayden's friends, and that every day at school is just another day for her to interact with those friends. While driving down the street to her school, she saw some of those friends. "KATHY!!!!!" being yelled through a rolled up window is not very effective, but she didn't care, and was just thrilled that she got to see Kathy before the start of her school day. A hug, a kiss, and an "I love you Aunt" was all I needed to start mine. I can't wait until Activity #11.