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....