Perspective and a Few Updates

With Aiden being such a young cancer patient, his daily needs occupy much of my time. I always knew my sweet boy was special, but I never dreamed being unique would take us all to such a scary place. Pediatric cancer in and of itself is rare; rhabdomyosarcoma is a rare type of childhood cancer. Finding a primary tumor in the diaphragm of a child is so extremely rare that research is few and far between. Information can be intimidating, but ignorance is not an option when you are your child’s advocate.




This journey is not about fear, anguish or sorrow; it is about strength, persistence and hope. As a parent of a child battling cancer, I walk hand-in-hand with countless other mommies and daddies in search of a cure. We are all – with the support of family, friends and even complete strangers – in this together. This avowal was so poignantly demonstrated over the past couple of weeks when precious Declan Carmical, one of Aiden’s friends and fellow cancer warriors, returned to Heaven.


* * *Perspective

At this point in time, it is hard to even remember the details of our long stay in the PICU at Fairfax Hospital. Back then I was exhausted, overwhelmed and always seemed on the verge of tears. During our stay, Chris and I received innumerable emails and phone messages. Surprisingly each communicative attempt helped to strengthen our tattered spirits and rebuild our broken hearts. Amongst all of the well wishes, though, stood an email of a different sort; a message from another parent of a child with cancer.

Sherri Carmical, Declan’s mom, reached out to me only 2 months after Declan’s AT/RT (Atypical Teratoid/Rhabtoid Tumor) diagnosis. We soon met each other on the Hematology/Oncology Floor when Aiden was given a room. If I am not mistaken, we were both on a late night run for graham crackers and coffee in the HEM/ONC “Nutrition Center.” We clicked immediately and spoke about treatment plans, staying at Hotel Fairfax and the fact that our sweet baby boys had cancer.

Over the past several months I had the opportunity to spend some time with precious Declan. Sherri and I made sure to introduce the boys as they shared such an unusual bond. During our last hospital stay, Chris, my parents and I each took turns provoking Declan’s amazing grin. Happy claps and laughter could be heard echoing down the halls when Declan’s smiling face peered back up at us.


Precious Baby Declan

Not too long after we were discharged, Sherri and Stan received news that no parent should every have to receive; Declan’s cancer spread and he did not have much time left. I felt for Sherri in a way that I never thought I could; I felt the pain, the sorrow, the anger, the unfairness of it all.

Chris and I barely spoke as we stood in line at the viewing waiting to offer Sherri and Stan our condolences. So many people came to pay their respects that a line wrapped around the perimeter of the building. Watching Sherri and Stan from afar, I was just in awe of their poise. I found myself wondering if I would be able to do that; could I greet hundreds of people after losing my child. Knowing Sherri, even for a short while, she exuded strength and grace. Meeting Stan only once, I could tell that he shared these characteristics. They were there to honor Declan and they did just that.

When it was my turn to speak with Sherri, I could not find the right words. We just stood there hugging and crying and hugging some more. I did my best to express my sorrow but I am not sure what words made it out of my mouth. The words Sherri spoke to me, though, are engrained in my heart forever, “Aiden has a Guardian Angel in Heaven now.” Through tear strained eyes, two moms willing to give up everything for the health and happiness of their children, exchanged a knowing glance. No matter what, we cannot give up this fight.


“You should know we will not let today be the end of your journey, we plan to work tirelessly towards a day when no Mommy or Daddy or Brother has to stand by a coffin and say good-bye to their sweet baby or brother. We will certainly miss you (oh God how we’ll miss you) but your light will shine bright in us and in the countless others who remember and were touched by sweet Declan’s smile” – Sherri and Stan Carmical http://www.declansjourney.com/



Aiden and Daddy sending balloons to Heaven to honor Declan's 1st Birthday

Hospital Stay

Aiden’s last hospital stay went pretty well. As I mentioned in an earlier post, he had to be admitted because his scheduled chemotherapy required constant hydration. Ifosfamide can be very tough on the bladder so fluids and bladder-protecting medications are necessary. Though Aiden enjoyed all the attention from his nurses at the hospital, he did not like being hooked up to an IV 24-hours a day. Chris and I soon realized that he also was not a fan of the hospital crib.

Around 3 o’clock in the morning, during our first night there, Aiden was inconsolable. Our wonderful nurse, Kristen, immediately jumped to our rescue. She found a hospital bed and promptly wheeled it into our room. It was not long after that Aiden curled up in my arms, nestled his little head in the crook of my neck and fell fast asleep.

During this hospital stay, Aiden was a lot more mobile and did not like being tied down. He was not yet crawling, but definitely on the verge. Luckily, nurse Brook, was able to find a creative solution. She wheeled a plastic push car down the hallway to our room and helped me strap Aiden to the seat, thus beginning our lap marathon around the HEM/ONC floor. Aiden happily “driving” his new ride while mommy followed behind pulling the IV pole.

Aiden’s Auction

On the afternoon of July 31st, Grandma Tobin watched my little man while I attended Aiden’s Auction. The event was a huge success! Chris and I are truly blessed to have such amazing friends. Thank you, from the bottom of our hearts for all of the awesome merchandise donations and time spent pulling the details together. Jason and Lisa Rizzo, your kindness has overwhelmed us; thank you so very much for organizing the auction.

We would also like to thank Chris Young for reserving space at the National Conference Center and all of the volunteers that helped set-up and work the event. You all really mean the world to us. To everyone that donated items to auction, we do not even know where to begin; Chris and I thank you for your generosity and compassion. To Sarah Mainer (Usborne Books), Lynsie Murphy (MarLo Sweets, formerly MJKakes), and Nicole Ratner (Lia Sophia Jewelry), you all were so wonderful to set up vendor booths at the auction and make a donation to Aiden's Medical Fund from you sales. Lastly, we are so appreciative for everyone who came out that day to support Aiden! It was great seeing so many of your smiling faces.

Little Accomplishments

Aiden has started crawling! He has not yet mastered keeping his tummy off the floor, but that does not stop him in the least. He is one determined little man and, if he sees something that he wants, he definitely goes for it!

In addition to crawling, Aiden has decided to try avocado. He may have been more interested in chewing on the spoon to soothe his sore gums, but food is making it in his mouth at the very same time! Now we just have to recreate this momentous event; Aiden seems to be over the novelty.

* * *

The doctor’s appointments, blood draws, port accesses, chemotherapy sessions, hospital stays and even an emergency room visit here and there have become part of our normal. It is almost easy to forget that things have the possibility of not turning out the way we hope. None of us know what tomorrow may bring, but appreciating what we have today, at this very moment, puts everything in perspective. Hug your children, spouses, family, friends and remember to celebrate all of life’s little accomplishments. Life is just so precious. Thank you, Declan, for reminding all of us to live in the now; one minute, one hour, one day are all that really matter.

All my love,
Leslie

Be sure to visit (click the link below):
Aiden's Prayer Circle