Welcome to our site for Aiden Lipscomb. We've created it to keep friends and family updated about our loved one. Visit often to read the latest journal entries and write us a note in our guestbook at the bottom (click on the small "leave a response" phrase in order to leave a comment).

We thank all of you for your love, prayers and support during this time!


Monday, September 27, 2010

NEW WEBSITE WITH BUILT IN BLOG!!!!


Check out Aiden's new website www.RallyForAiden.com! There is a built in blog feature, Iron Aiden's Blog, where I will post all entries moving forward. Be sure to read today's newest post, "Childhood Cancer Awareness and Treatment Updates for Sweet Aiden."

Please feel free to contact me with any questions at oursweetaiden@gmail.com.

All the very best,
Leslie

Tuesday, September 14, 2010

Upcoming Events!

A few of our wonderful friends asked that Chris and I update the blog with a couple fundraisers that they created to support Aiden and his recovery fund. See below and please direct all questions to the "host" of each event. Thanks again for all of the amazing support!

***

IRON AIDEN 5K

Hosts: Sandy and Christian Devol
Date: October 23rd at 9:00AM
Place: Park Valley Church,
4500 Waverly Farm Road
Haymarket, Virginia
Details: http://www.active.com/running/haymarket-va/iron-aiden-5k-2010-kx305 (register on this site!)

*Register on or before October 1st and receive an Iron Aiden 5K t-shirt*

Questions: Please email Sandy Devol at sandy.devol@hotmail.com.
Facebook: http://www.facebook.com/#!/event.php?eid=136883756355339

***

GLORY DAYS FUNDRAISER FOR AIDEN LIPSCOMB


Host: Sara Pittelkau
Date: NOW through December 31, 2010
Place: Any Northern Virginia Glory Days Restaurant
Details:
When you dine at a Glory Days Grill, the restaurant will contribute 10% of your total food purchases to Aiden Lipscomb Medical Fund. Bring your neighbors, friends, and relatives, because the 10% applies to the total food bill. Simply ask your server for a copy of your guest check (not credit card receipt)

Questions: Email Sara Pittelkau at syp0721@yahoo.com
Facebook: http://www.facebook.com/#!/event.php?eid=142427852444681

Thursday, August 26, 2010

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!


video

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

Wednesday, August 18, 2010

Updates Coming Soon!

I am working on a new post and hope to update the blog this week.

Much love,
Leslie

Wednesday, July 28, 2010

Aiden's Auction is this Saturday!

EVENT DETAILS -
Date: Saturday, July 31st
Time: 1 – 4 in the afternoon
Location: National Conference Center
18980 Upper Belmont Place
Leesburg, VA
http://www.conferencecenter.com/
Created By: Jason & Lisa Rizzo
Questions, email Jason at jrizzo19@gmail.com
Details: $5 Entry Fee
All Proceeds go directly to the Aiden Lipscomb Medical Fund

AUCTION ITEMS -
Most of the available silent auction items are listed below! (Click to enlarge each photo or email Lisa Rizzo (lisafbrown@gmail.com) and she will send you a copy!)







LOCAL VENDORS -
In addition to the silent auction, local vendors are also offering products and services to benefit Aiden.

- Usborne Books
Book Fair during the silent auction as well as an online book fair happening now! For more details, or to order now, visit http://usborneteaches.com/ and select Aiden’s Auction in the right-hand corner. If you have any questions, or are not comfortable ordering online, you can email Sarah@UsborneTeaches.com or 703.861.5849.

- MJ Kakes
Froggy Cupcakes created by local cake designer, Lynsie Murphy. Enjoy cupcakes at the event or place a future order to enjoy! Proceeds benefit the Aiden Lipscomb Recovery Fund. Visit www.mjkakes.com for more information! Be sure to check out the “Iron Aiden” link.

- Lia Sophia Jewelry
Jewelry Advisor, Nicole Emard Ratner is holding a special Lia Sophia show to honor Aiden. Lia Sophia Jewelry is crafted with exceptional attention to detail and complements any style. Nicole is donating 100% of the profits to baby Aiden.

- Joe's Pizza
All money raised will be to Aiden’s Recovery Fund.

- Iron Aiden Bracelets & T-shirts

...and much more!


Hope to see you all there! Please email Jason Rizzo (jrizzo19@gmail.com) or Lisa Rizzo (lisafbrown@gmail.com) with any questions!





CAN'T MAKE THE AUCTION? -
Email particular items of interest to Lisa Rizzo (lisafbrown@gmail.com)with your top bid before Saturday, Lisa will place it for you (and if you win, it will be shiped directly to you). After the auction, all items that were not bid on will go online for sale (email Lisa with questions).

Monday, July 26, 2010

Quick Update: Hospital Admission Delayed Until Thursday

**If you haven't already done so, be sure to read my more detailed post below this entry!**


Today Aiden and I headed to Children's National Outpatient Clinic so that his bood counts could be tested. Aiden's ANC (Absolute Neutrophil Count) needed to be above 750 in order to receive chemotherapy; Aiden's came in just around 580, which is too low for treatment. Since this round of chemo is designated inpatient, his hospital stay is postponed until Thursday of this week. Treatment delay due to a low ANC is not uncommon.

At the clinic today Aiden was given an extra Neupogen shot. We are hoping the additional injection will give his neutrophils the boost they need to reassume chemotherapy later this week.

Thanks for all the well wishes we received this morning. I will continue to keep everyone posted!

Love,
Leslie

Aiden doesn't seem too upset about the delayed hospital admission, though he was looking forward to flirting with all of the nurses!


Sunday, July 25, 2010

Short Treatment Break, New Chemo, Neutropenia and Much More

As many parents know, staying home to care for a child is a full time job. Your work day does not end at five o’clock and you do not get time and a half for working nights and weekends. However, if you are able to do it, even for a short while, you will instantly realize that it is the most rewarding position of your life. Caring for a child with special needs is just as fulfilling but involves a meticulous level of attention, caution and diligence. It is hard not to second guess yourself on a regular basis and, since perfection is unattainable, the reality of fallibility often rears its nasty head at the most inopportune times. I have recently come to realize, that all I can do for, and all I can offer, my sweet baby boy is my very, very best.





The past few weeks involved the nuptials of my best friend, a nice break from treatment, introductions of new chemo agents, a lot of tummy upset and an anemia scare. Chris, Aiden and I continue to take the good with the bad. Truly it is not that hard to do since each happy moment invigorates the fight in us all. Plus, the good gives us hope and, these days, that is all we really need.

* * *


Congratulations Mr. and Mrs. Rizzo!

On July 3rd, my dear friends Lisa and Jason tied the knot. Lisa and I grew up together and formed a strong relationship over the past fourteen years. Lisa asked me to be her Matron of Honor and I graciously accepted. I was also lucky enough to meet her husband Jason through Chris several years ago. Jason and I even graduated from George Mason University’s School of Management together. For all of these reasons, I never thought that a situation would arise potentially preventing me from attending their wedding.

As the date drew near, my heart began to ache. Since Aiden’s diagnosis I had not left his side. His condition had the ability to change very quickly and I was petrified of leaving him. The diagnosis was still so new and the sting of it all had not yet dissipated. Lisa and I had many conversations about the topic; Lisa relentlessly tried to convince me that it was okay to miss her big day. I told her that I wanted to at least attend the ceremony as long as Aiden was doing well. Fortunately, on the first Saturday in July, I was able to do just that; as part of the wedding party, along with a church full of happy guests, I was able to watch my best friend say “I do.”


Photo by Kate Triano


During the ceremony a prayer was said for Aiden. Though Lisa prepared me for this, the gesture still touched my heart and I could not stave off my emotion. Thank you so much, Lisa and Jason!


Lisa and Aiden back in March before his diagnosis


In addition to the constant support that Lisa and Jason provide us on a daily basis, they somehow found the time to plan an AMAZING event for Aiden. Aiden’s Auction will be held on July 31st at the National Conference Center in Lansdowne. I will post a more detailed entry about this event very soon which will include a list of items up for auction. Please stay posted and in the mean time, visit www.aidensauction.com and Aiden’s Prayer Circle for more details.



A Treatment Free Week that is not Free of Stomach Upset

Aiden enjoyed his first week off a couple weeks ago. Since receiving the good response to therapy news that I mentioned in my last post, it was so nice to have a chemo-free week to celebrate. Since Aiden’s immune system is still compromised, and he is such a little guy we are not able to visit with other young children, party with large groups, go to the public pool, or even take a stroll through the mall. When Aiden is all better we plan to make up for this with dozens of play dates, family vacations and parties to celebrate his recovery. We did not let this stop us from having fun, though! Aiden got a brand new Jeep Liberty Walker which he loves to take on rides around the kitchen. He also got to enjoy extra playtime with Grandma and Grandpa Tobin and got a visit from Grandma Terry. It is just so nice to evade all treatment-related side effects even for just a short time.






Though a week off is nice, it is not vacation. A week sans chemo is often necessary for count recovery. Aiden’s counts were okay, but definitely on the low side which may have contributed to a little bug he caught towards the end of the week. That Friday he got very sick and since we are all living with my parents now, it was their first time to experience such an occurrence, which proved quite unsettling. We were very close to leaving for the hospital, but fortunately Aiden’s body responded to the anti-nausea pill I held under his tongue. Usually when Aiden gets sick to his stomach we give him liquid Zofran using an oral syringe. More often than not, it is too much for his sensitive little stomach; any medicine that makes it down ends up coming right back up again offering little relief, if any at all. During our last hospital stay, we were introduced to Zofran tabs which dissolve in the mouth. This has been such a help and has definitely contributed to a decrease in visits to the ER due to vomit-induced dehydration.


New Round of Chemotherapy, Neutropenia at Home & Anemia Scare

Last Monday Aiden started his new chemo regime. He received Vincristine, Cyclophosphamide and the new chemo agent, Doxorubicin. Aiden gets Vincristine frequently but has not had Cyclophosphamide since he was in the hospital. Cyclophosphamide was one of the first chemotherapies that Aiden ever received. It is a potent medicine and almost always causes patients to become neutropenic (patients are characterized by an abnormally low number of neutrophils, a type of white blood cell which helps fight infection). Patients are also likely to have low red blood cell (hemoglobin and platelet) counts as well. Patients suffering from low red counts can get transfusions, but white blood cell transfusions are not available. To help lessen the severity and length of neutropenia, Neupogen shots can be administered. Last Tuesday, I was trained to give Aiden these shots. He had a small IV cannulae with an injection port (tube that can be inserted into the body, often for the delivery or removal of fluid) inserted in his leg so that I can easily give him shots through this specialized port. This will help reduce the pain of daily injections while also reducing the infection risk associated with multiple needle pricks. Aiden can still feel the medicine going into his leg so the process is definitely a two-man-job.



Seven days after this round of chemotherapy Aiden became neutropenic. All of his counts were low when he was tested at the clinic the following Monday. Neutropenia can last ten days so we are all doing what we can to follow all neutropenic precautions to help keep him safe. Such precautions include, but are not limited to the following:

- Wash hands frequently
- Do not get cuts, punctures or scratches on the skin
- Avoid people who have a cold or flu
- Do not visit crowed areas
- Avoid anyone who has received a live vaccination in the past three weeks
- Do not eat raw vegetable and fruit or undercooked meat (does not yet apply to the little guy as he prefers milk these days)
- Do not have fresh flowers in house or hospital room

Since Aiden is so young, the period of neutropenia is quite stressful. It is hard to tell if his crying is teething related, due to pain, or if he is starting to feel bad. Babies with cancer present quite a challenge. Any temperature over 100.4 has to be reported immediately to Children’s National Medical Center. IV antibiotics and fluids need to be administered within an hour to make sure the infection does not enter his blood stream. Should the situation warrant, an ambulance ride may be necessary to get him to the hospital in an adequate amount of time. For these reasons, we have to really limit visitors. It is just better to play it safe; we are not willing to take chances with his health. Many of us carry germs without even presenting symptoms. We again want to thank everyone for understanding that we have to reduce Aiden’s exposure to germs. When Aiden is done with chemo he will be making multiple visits to meet all of his amazing supporters!



In addition to Aiden entering neutropenia, he also started to get sick to his stomach. This past Monday Aiden received his routine Vincristine push at the clinic. He has many rounds of Vincristine under his belt and fortunately he has not shown any discernible side effects thus far. (I am knocking on wood right now and keeping my fingers-crossed that this encouraging response continues.) Strangely though, Saturday through Thursday he got sick once a day. Chris and I were thoroughly relieved by the brevity of each incident, but were somewhat perplexed as to the cause.

On Wednesday I made the decision to take him to the clinic for assessment. Aiden was extremely pale and lethargic. I was becoming increasingly fearful that we were beginning to see the onset of anemia. Soon after his arrival, I was told that I won the “mommy award” for the day because I did the right thing be bringing him in. Given the situation, though, I wish that I was wrong. His hemoglobin counts had gone down since his blood was last drawn just a few days earlier. The situation was not yet an emergent one, but he definitely would need a transfusion first thing in the morning as we had already missed the last courier run from the blood bank. Aiden was quickly given IV fluids to make him more comfortable.



He slept most of the drive home, but things started to regress from that point on. Aiden was extremely irritable and uncharacteristically upset for much of the night. My mother and I stayed up with him all night long trying to offer comfort whenever possible. Aiden would take brief restless naps (most likely brought on by complete exhaustion) but he would wake screaming. I did place a call to the on-call physician but was told that we should wait until morning to bring him in since he was not febrile. I was tired, frustrated and worried that Aiden needed urgent care. When we presented for the blood transfusion, Aiden was still out of sorts and once again, my fears we affirmed; his hemoglobin had dropped further. Once the transfusion began, Aiden started to settle down. After about an hour, he slept peacefully in my arms and did not wake until the transfusion was complete two hours later.

Aiden looked so much better after receiving blood; the color again returned to his once pallid cheeks. Teething seems to be the only issue currently at hand. Aiden’s poor gums are bothering him to the point where he does not even want to eat. We are using teething toys, cold washing cloths and Tylenol, if necessary. It is scary to give a neutropenic child a fever-reducing medicine though. Temperature is our only barometer to assess infection and we do not want to do anything to mask that extremely important symptom. At the same time, though, I do not want pain from chemotherapy or teething to make my sweet boy feel lousier than he already does. We are looking forward to the commencement of this neutropenic period and hope that a tooth or two may grant us an appearance very soon.



Return to Inova Fairfax Hospital for Inpatient Chemotherapy

Next week Aiden is scheduled for two new chemotherapy agents, Ifosfamide and Etoposide. Ifosfamide is extremely difficult on the bladder so he will have to receive IV fluids almost 24 hours a day and a full day following the last day of treatment. In addition to fluids, MENSA will be administered to help further protect his tiny bladder. For these reasons, Aiden will have to be continuously monitored at the hospital.

We plan to report to the Children’s Outpatient Clinic early Monday morning so that he can get his blood drawn. Aiden’s ANC (absolute neutrophil count) will have to be over 750 in order for him to even receive chemotherapy. As long as his white and red blood cells look okay, we will then report to the HEM/ONC floor at Inova Fairfax Hospital for Children. Aiden will be admitted for a minimum of six days and I plan to stay with him all next week.

* * *


The past few weeks have been trying at times, but Aiden never ceases to amaze me. Even when he is at his lowest, he is able to offer up a little grin or two. Not to mention he will probably start crawling any day now. Currently he likes to roll himself to his most desired locations, but I can see the frustration in his eyes when his favorite toy is just out of reach. It makes me so happy that he is keeping up pretty well with all of his developmental milestones. He definitely is a fighter and set on beating cancer.

Thank you all for continuing to read this blog and offering such heartfelt words of support, donations, dinners and baby items. Chris and I feel so blessed each and every day. I truly hope to one day be able to thank each and every one of you personally. I am very behind in returning emails, phone calls, texts, Facebook messages and letters. Please know that we truly appreciate all that everyone has done; we think about it all the time.

To all of my dear girlfriends, I promise to take you all up on a dinner out, coffee or simple conversation. Hopefully when the move is complete, we are all unpacked and Aiden is doing well, Chris and I will all have some more time to relax. As always, thank you for your continued understanding, support and compassion.

Please continue to pray for my brave little boy.



All my love,
Leslie


Aiden vs. Solid Foods - Take 1, 2, 3...