Aiden Lipscomb

NEW WEBSITE WITH BUILT IN BLOG!!!!

2010-09-27T16:03:00.004-04:00

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

Upcoming Events!

2010-09-14T10:13:00.003-04:00

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

Perspective and a Few Updates

2010-08-26T21:10:00.030-04:00

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

Updates Coming Soon!

2010-08-18T09:52:00.002-04:00

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

Much love,
Leslie

Aiden's Auction is this Saturday!

2010-07-28T13:08:00.015-04:00

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).

Quick Update: Hospital Admission Delayed Until Thursday

2010-07-26T13:41:00.005-04:00

**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!

Short Treatment Break, New Chemo, Neutropenia and Much More

2010-07-25T13:24:00.003-04:00

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...

Delay in Posting

2010-07-20T09:05:00.003-04:00

Aiden's tummy has been a bit upset since this past weekend. He seems to be doing a bit better now and we all hope the rest of the week will be uneventful. :o) I will try to finish up my entry soon; there are many updates to share.

All the best,
Leslie

So Much News To Share

2010-06-30T14:39:00.005-04:00

Much time has gone by since my last blog post. Describing the past several days as busy would be an understatement. Aiden’s demanding treatment schedule, a change in residence as well as trying to stay ahead of expected chemotherapy side effects has commanded a great deal of our time. All has not been a challenge though; we have been blessed with several wonderful fundraisers in the past few weeks. We also have some amazing news to share about our sweet Aiden.

I recommend grabbing a cup of java or nice tall glass of iced tea as this entry is a long one, but well worth the read!

* * *

Compassionate Employer and Fundraising Success

Thanks to Main Street Bank for hosting the amazing, and very successful, fundraiser at Jimmy’s Old Town Tavern in historic Herndon, Virginia. Chris has been a Main Street Bank employee for almost 4 years now. His coworkers feel like an extended family and have done so much for Aiden. Main Street Bank has a corporate culture that is enriched with love, kindness and respect. Most importantly, though, traditional family values seem to fill the heart of this community bank.

When Chris and I were in the PICU with Aiden, the day after getting his cancer diagnosis, we realized that we had to notify our employers of the situation. When Chris called the bank, there was only concern for us and, of course, little Aiden. Timelines, leave balances and workload reassignments were not discussed. He never felt as if his company was detached from the issue at hand or that he had to worry about his position. He was treated like a person, not a name on an employee roster. Chris was told to take as much time as he needed and not worry about anything else. Main Street Bank understood that we were caught in a fog of anguish, worry and helplessness. They also realized that financially we needed a sense of security.

Such truly selfless words and actions are what set businesses apart. We are blessed to have Main Street Bank in our lives and are truly appreciative for all that they have done and continue to do for our little boy.

A New Place To Call Home (Or Should We Say “Home Again”)

In December 2008, Chris and I moved into a new home. A beautiful residence, backing up to a picturesque pond in Stone Ridge (Aldie), Virginia. We spent much of the preceding summer and autumn watching our house take shape. It was an exhilarating process; our dreams were coming true right before our eyes. With a new home crossed of our list, we realized that we were ready to begin the next chapter and start a family.

Unfortunately, now that we are officially down to one salary and possess an ever-growing pile of medical bills, we made the very difficult decision to move. Chris, Aiden and I are currently living with my parents in Centreville. We are still in the process of moving in our belongings; any free time we can find, we spend at our old place packing and cleaning. If all goes well, we hope to put our house up for rent in the next few days.

Moving is arduous; stressful at the very least. Chris and I are making a deliberate attempt to reduce the stress in our lives, which is why we are beyond grateful for the genuine kindness of Bayshore Transportation. Bayshore Transportation, located in Woodbridge, Virginia, has offered to package, move and store our furniture and belongings for two years (if needed) at no cost. We are still in awe of their sincere compassion during this very difficult time in our lives.

Aiden is already settled in his new home. If there was even a question of indulgence before, there is definitely no uncertainty now; Aiden is beyond spoiled and loving every minute of it. Chris and I welcome the attention too. Having extra hands around has allowed each of us a little time to rest.

Being back at my childhood home equates comfort, which is more than welcomed right now. At least the walls in my old room are no longer adorned with posters and decorative notes from friends. It is true; family is what makes a home, not the other way around.

Great Neighbors, Great Food, and Great Fundraising

Lisa and Dan Barrick moved into their Stone Ridge home just before we moved into ours located right next door. They have been amazing neighbors all along, but now they have taken their neighborly kindness to a whole new level. On Thursday, June 24th and Sunday, June 27th they held two fundraisers. The first event at the Chili’s restaurant in Dulles, Virginia boasted a huge turnout. The restaurant even admitted they did not anticipate such a showing but were kind enough to donate 20 percent from the meal sales of all Aiden supporters. The second event held at the Moe’s in South Riding, Virginia was very successful and many people showed up to offer their support for Aiden. In addition to a 10 percent contribution from all sales that night, Moe’s management donated a catering certificated which was raffled that evening.

Lisa and Dan are expecting their first child in about seven weeks. I know from personal experience just how tiring, yet exciting this stretch of time can be. I am not sure where they found the energy and stamina to host two such amazing events, but Chris, Aiden and I are so very grateful for their support and cannot wait for baby Barrick to make his debut this summer.

View pictures from these events on Aiden's Prayer Circle Facebook Page!!
FACEBOOK: Aiden’s Prayer Circle (please join!)

A Week Full of Treatments and Response to Therapy Evaluation

The week of June 21st was a busy one for my sweet boy. He received his Vincristine and Irinotecan treatments on Monday. Tuesday through Friday he received Irinotecan alone. He has had the treatments mentioned above before, which happened to precede the two severe vomiting episodes mentioned in earlier posts. Aiden’s tummy was definitely uneasy during treatment and is still not completely back to normal now, but we can happily report that things have been relatively calm related to Irinotecan. On Thursday, June 24th, however, Aiden did require a blood transfusion. All week his hemoglobin counts had been inching slowly downwards. Blood transfusions are very common during chemotherapy. His chemotherapy treatments attack and kill both bad and good cells as, like cancer cells, they replicate quickly; red blood cells fall into this category and are therefore targeted by the medicine.

During his transfusion, I could already see a difference. The color quickly began to come back to his face. When we left the clinic, he was alert and babbling happily to himself. Seeing his big brown eyes light up, offers such relief. My little man is such a fighter.

This past Monday, June 28th, Aiden once again visited Inova Fairfax Hospital. He was not there to be treated, though; he was scheduled for imaging. Aiden’s first evaluation to assess his response to therapy had arrived. A flood of irrational emotions quickly began to emerge. Chris and I felt anxious, excited, confident and uncertain all at the very same time.

Aiden faced his MRI and CT studies like the trooper that he is and did not even require sedation for the CT. The CT was almost instantaneous, while the MRI took a very long time. Aiden was a bit upset in recovery, which was not surprising since he went without nourishment for so long in preparation for the studies. On the ride home we experienced a little trouble; Aiden got quite sick. As our dehydration fears began to surface, we forced ourselves to focus on the issue at hand. We cleaned up Aiden, rushed him home for a bath, administered anti-nausea medication and (thirty minutes later) let the little guy enjoy a nice long meal.

Yesterday, Aiden received his Vincristine treatment at the clinic, but first we met with Dr. Chang for his scheduled appointment. Dr. Chang told us that Aiden is, in fact, responding well to therapy. The tumor in his diaphragm is shrinking!!!! Chris, Aiden, and I (plus the rest of our combined families) are beyond elated. I do not think there is a word to describe just how extremely happy we are for Aiden. This is the news we have been longing to hear and now we are reenergized for the long road still in front of us. In two and a half weeks we begin a new treatment regimen, which will eventually involve radiation. For now, though, we have a couple weeks off, which, once his counts are back up, we plan to thoroughly enjoy.

* * *

Though the road ahead of us will undoubtedly contain many twists and turns, we will continue to stay the path. We know that our journey has not been and will not be an easy one, but experiencing pain has helped us appreciate pleasure. Chris and I do not consider ourselves unlucky; we are so blessed to have Aiden, each other, our families and our friends. We have been given the remarkable opportunity to truly appreciate life. A simple notion that is so easily taken for granted.

As always, thank you for your support. Your prayers are working!

With love,
Leslie

WEBSITE: http://www.helpbabyaiden.com/
FACEBOOK: Aiden’s Prayer Circle (please join!)
AUCTION: www.aidensauction.com
EMAIL: mailto:oursweetaiden@gmail.com

Visit from Uncle Steve and Aunt April :)

New Post Soon!

2010-06-26T12:18:00.003-04:00

I am writing a new post now and hope to get it up for all to read very soon.

All the best,
Leslie

Ambulance Ride to Fairfax Hospital and Aiden's First Word

2010-06-16T14:29:00.012-04:00

Saturday morning Chris, Aiden and I spent some quality family time together. When the clouds started to fill the sky we took advantage of the cooler temperatures and sat on the deck to enjoy the outdoors. The showers stayed away which gave us the opportunity to just relax; relaxation has not been standard practice for quite a while now so we understand the importance of relishing these special moments. Much like the unpredictability of summer showers, though, our tranquil afternoon took a drastic turn.

Suddenly, without warning, Aiden began to get sick. That solitary episode in-and-of-itself did not alarm Chris and I as this is our new “normal.” Chris cleaned up the area while I took Aiden upstairs for a bath. Aiden smiled at me and I felt reassured that he was on the mend. As I carried him to his room, though, he began to get sick again. This time, he was inconsolable and could not seem to control his stomach muscles. I called the on-call physician for Children’s National Medical Center and was told to drive Aiden to the Emergency Room at Fairfax Hospital. Chris and I knew this would not be an easy drive as Aiden was very uncomfortable and continuing to get sick. We packed what we could and rushed out the door.

During the trip down route 50, Aiden started to lose all of the color in his face. Saturday was day ten since his Irinotecan treatment, which means that his blood counts may be low. Though paleness does follow severe vomiting and is linked to dehydration, it is also a symptom of anemia (a condition in which the body does not have enough oxygen-providing red blood cells), which I have now been trained to recognize. I tried to keep Aiden’s focus, though he was desperately trying to sleep. Suddenly, I was not able to provoke a response. Chris was driving like a mad-man but we were not getting through the Saturday afternoon traffic fast enough. I picked up my cell phone and dialed 9-1-1. I am not really sure of the conversation I had with the dispatcher, but within minutes paramedics were at our car door.

As soon as Aiden was lifted from his car seat, his big brown eyes burst open. He was in awe of all the people, flashing lights and sirens. Chris and I exuded worry while my innocent little man emanated pure, unadulterated amazement. I accompanied Aiden in the ambulance, while Chris followed in the car. He was instructed to obey all traffic laws, which, if you know my husband, was not an easy thing to do given the situation.

Aiden was stable; he was actually quite comfortable. His stats were excellent and the vomiting ceased, at least for the moment. One of the paramedics defined Aiden’s episode as a “brief, altered state of consciousness.” He may have been extremely exhausted from all of the aforementioned vomiting or the severe muscle contractions may have elicited a nerve reaction which caused him to quickly snap in and out of consciousness. Regardless of the cause, I was reassured by all of the paramedics that I did the right thing by calling for an ambulance. Given Aiden’s medical situation we cannot take any chances and it is always better to err on the side of caution.

When we arrived at Fairfax Hospital we were greeted by a familiar face, Dr. Mary Camarca, pediatric emergency medicine physician. Dr. Camarca treated Aiden earlier in the week. She commented that he did look worse that their previous encounter. He was still getting sick so his port was promptly accessed to administer IV anti-nausea medication and fluids. Since this was our second ER visit in one week and the incident was a little more severe, we were admitted to the oncology floor so that Aiden could be closely monitored. Almost in harmony, as the fluids entered Aiden’s body, the color began to return to his face. Aiden’s happy disposition promptly followed suit.

Chris, Aiden and I made it to the oncology floor late Saturday night, though it may have actually been early Sunday morning. All three of us were exhausted. Aiden drifted off to sleep without hesitation. Chris and I, on the other hand, squeezed into the pull out chair (definitely meant for one very small person) in an attempt to grab a few hours of shuteye before sunup. When morning arrived, Aiden woke with a smile and reached for Chris and me to pick him up from the crib. He was doing remarkably well and just wanted to be close to us. It is believed that Aiden may have contracted a stomach virus even though he was not febrile at all during the past week or weekend. We are not actually sure as to the cause which is only further muddled by the fact that Aiden cannot tell us what he is feeling. We also introduced solids to his diet last week. Though solids are not believed to be the source of his vomiting spells, it may have served as a contributing factor. We have decided to stave off new foods for a little while longer.

Aiden and Daddy Sleeping in the "comfy" hospital chair-bed

* * *
Aiden received his scheduled Vincristine treatment on Monday in the clinic. He actually got the IV push while sitting in the entertainer chair. He really enjoyed himself and was coined “naked baby” as he preferred being shirtless while his port was accessed at the clinic. As expected his hemoglobin count was low. Dr. Chang, Aiden’s oncologist, said that he would like Aiden to return to the clinic on Thursday for a blood transfusion. This is normal during chemotherapy and will be the third time Aiden has received blood since being diagnosed. I will be extra-vigilant during the next few days though to ensure Aiden does not exhibit any outward signs of anemia before our return. His platelet and neutrophil counts were okay, but I will – of course – be monitoring him for signs of those low counts as well.

"Naked Baby" - so happy!

Aiden is doing very well today and has been talking a lot! His new favorite expression no longer serves as the basis for an indiscernible string of coos. Check out the video below to hear Aiden’s first word!!

Please keep praying! We love you all and thank God for blessing us with such an amazing network of support and strength.

With love,
Leslie and Chris

WEBSITE: http://www.helpbabyaiden.com/
FACEBOOK: Aiden’s Prayer Circle (please join!)
AUCTION: www.aidensauction.com
EMAIL: mailto:oursweetaiden@gmail.com

The Week in Review and Fundraising at Cici's Pizza

2010-06-11T12:15:00.002-04:00

Aiden received his Vincristine treatment this past Monday at the clinic. It was a simple IV push and only took a few minutes to administer. Despite the swift appointment, Aiden was not a happy camper. Teething mixed with an upset tummy made for a rough afternoon and evening. The Irinotecan that he received Tuesday through Saturday of last week is known to cause gastrointestinal upset and most likely contributed to Aiden’s queasiness.

Tuesday proved to be another difficult day for my sweet boy. The trooper that he is seemed to shine through, though; Aiden was able to muster smiles and hugs for mommy and daddy in spite of his sour stomach. Chris and I did make the decision to take him to Inova Fairfax Hospital’s Emergency Room that night. He was not keeping anything down and we did not want to chance dehydration. As usual, he won over all the nurses and ER physician right off the bat. He received a bolus of fluids as well as some intravenous nausea medicine. Soon his tummy settled and he quickly drifted off to dreamland. Mommy, however, had to make the long trip home sans any form of caffeine.

When four o’clock neared, baby was tucked snuggly into his pack-in-play while mommy laid in the adjacent bed watching her sweet boy sleep.

Wednesday was a much better day for Aiden. He was feeling more himself and played, explored, cooed and giggled throughout the day. In addition to playtime, a steady nap schedule helped everyone catch up on some much needed shuteye. Grandma Tobin was also a huge help as she accompanied us to the hospital and helped Wednesday while we all tried to recover from a long, sleepless night.

Wednesday evening, Chris attended the fundraising event at the Falls Church Cici’s Pizza. We had a huge turnout and cannot even begin to thank everyone who attended (as well as those who were there in spirit). The simple act of having people share a quick meal in honor of our boy truly warmed our hearts and recharged our spirits. A handshake, hug – even a reassuring glance – offers such comfort. I know that I have said it before, but it is awe-inspiring to experience such an outpouring of love for our child. Thanks to everyone for coming to Cici’s and we hope that you all will be able to make another fun event or two – we have quite a few coming up this summer because of all of our amazing, event-planning friends and family. We also want to thank the hundreds of people who are praying endlessly for Aiden. Thank you, thank you, thank you. Please feel free to share his story; the more prayers the better. Lastly, a huge thanks is owed to Mrs. Sarah Mainer for organizing the event and to the management at the Falls Church Cici’s Pizza for allowing this fundraising opportunity. THANK YOU!

(See all Cici's Fundraising Pictures on Aiden's Prayer Circle Facebook Page - link at bottom of this post!)

Aiden is looking forward to his weekend. If weather permits, we will be taking numerous walks around the pond. He loves looking at the quack-quacks (aka,: ducks, geese, really any bird-like creature residing in the nature reserve that is our backyard.) We will be sure to take plenty of pictures. Thanks again for reading the blog! Be sure to check back again soon.

God Bless,

Leslie and Chris

**If you would like to be on an e-mailing list to receive updates and event information please email oursweetaiden@gmail.com. Thanks!**

WEBSITE: www.helpbabyaiden.com
FACEBOOK: Aiden’s Prayer Circle
AUCTION: www.aidensauction.com

Post Mediport Surgery and First Week of Daily Chemotherapy

2010-06-06T08:45:00.000-04:00

Mediport surgery went very well last week. Aiden was quite the trooper as he bounced around the surgery schedule that morning and much of the afternoon. Once he finally entered the operating room it was nearing 3 o’clock. Surgery was quick and Aiden’s surgeon, Dr. Stephen Kim, did a wonderful job. He removed the dysfunctional port and delicately inserted a well-working replacement. The new port is now just under the skin on the upper right side of his body. A blood culture was drawn in recovery to assess Aiden’s blood counts and thankfully the port worked perfectly.

Aiden with his old port

Following surgery, Aiden received chemotherapy in the hospital. Originally, Aiden was going to be given this treatment at the clinic, but, due to the surgical delays, Dr. Patrick Chang, Aiden’s oncologist, arranged for chemo while we were in the recovery room. Aiden received a quick IV push of Vincristine and we were promptly discharged. Over the next couple of days Aiden was prescribed Tylenol every 4 to 6 hours for pain. After the first day, he was doing so well that we did not need to continue the Tylenol schedule on day two!

The Tuesday following Memorial Day, Aiden and I ventured to the Children’s National Outpatient Clinic for his chemotherapy treatment. Blood was drawn upon arrival to get all of his counts and make sure he was healthy enough for chemo. Aiden’s ANC (Absolute Nurtophil Count) is a calculation that helps assess his infection-fighting ability. If his ANC is too low, he is at a high risk for infection so he will not receive chemotherapy. Aiden’s ANC was 2,200, which was high enough for treatment. Since we are in week two of the new treatment plan (technically week 4 of the overall chemotherapy roadmap) he gets Vincristine and Irinotecan on day one and Irinotecan each day following through Saturday.

Aiden and Mommy in the infusion room

Playing with a nice cold Coke bottle during chemo

Aiden did very well on days one and two of treatment this week! He really enjoyed his trips to the clinic and especially loved watching all of the fish swim around the huge aquarium lining the back wall in the infusion room. On day three Aiden began to get a little fussy. Irinotecan is known to cause gastrointestinal upset and Aiden is beginning to feel the cumulative effects of the chemotherapy. He is not eating as well as usual and has lost about a pound since arriving home from the hospital. This is completely normal as Aiden is still transitioning from his hospital schedule. Much of his aversion to eating can be contributed to his chemo regimen this week. He is feeling nauseous (or so we deduce given the indications) so Chris and I are administering anti-nausea medication to help combat his queasiness and ward off vomiting – though it has not helped in all instances.

During chemotherapy and 48 hours after treatment it is imperative that Aiden’s diapers are changed every two hours. These drugs are excreted in urine and other bodily fluids which can burn the skin if left unattended. In addition to frequent diaper changes, Aiden is getting various medications around the clock and eating every three hours. Though we are all quite tired (actually the term exhausted sums it up better), we are starting to structure a routine and things are beginning to feel a bit more “normal” each and every day.

Aiden has actually started to meet many of his development milestones. We were prepared for him to be behind as he was in the hospital for almost a month, but our little “Iron Aiden” is determined and not letting anything hold him back. He has found his feet and loves playing with them every chance he gets. Even more exciting, Aiden is almost sitting up unassisted for extended periods of time! He is such a big boy and loves babbling to anyone who will listen – especially all of the nurses; After all, Aiden is quite the charmer. Aiden has also entered the wonderful world of teething. He prefers his hand to any pacifier and most things go right in his mouth. By the looks of his gums, a tooth or two may pop through very soon!

Aiden playing with his feet

Aiden sitting up!

Teething

Chris and I continue to do what we can to focus on all the positive little things which happen each and every day. We find our strength through prayer, support from family and friends and by just looking at our sweet boy. Thank you all for reading the blog. I hope to get entries out a little more quickly moving forward! Please keep Aiden in your prayers.

All our love,
Leslie and Chris

More Photos!

Enjoying the deck

Smiling in his froggy outfit

So happy!

Hanging out with Daddy

So sweet

Update Coming Soon!

2010-06-01T23:00:00.000-04:00

I know I haven't updated the blog recently. Aiden and I are still trying to get into a routine at home, which has proven a little easier said then done. I will update the blog tomorrow morning so be sure to check back then!

New Chemotherapy Regimen & Mediport Replacement Surgery

2010-05-25T12:31:00.000-04:00

The past several days have been quite the rollercoaster. Friday morning Dr. Patrick Chang, Aiden’s oncologist, told Chris and I that he now would like to treat Aiden more aggressively. Nothing has changed in regards to the tumor, but after speaking with Dr. Douglas Hawkins, chair of the rhabdomyosarcoma clinical trial for the Children’s Oncology Group, Dr. Chang feels that we should employ a more aggressive chemotherapy regimen. Aiden will now receive 54 weeks of chemo which will involve 4 additional chemotherapy agents.

During Aiden’s original surgery – when the tumor was discovered – some of his pleural fluid was sent to pathology for testing. It came back positive for cancer cells. This was not surprising, however, since all tumors of the diaphragm involve a pleural effusion (excess fluid which accumulates in the pleural cavity). Dr. Hawkins is concerned that if we do not treat Aiden more aggressively now, there is a chance the cancer can come back after treatment. Evidence of malignant cells in his pleural fluid gives us more reason to use a hard-hitting treatment approach.

More extensive chemotherapy, of course, involves more possible side-effects. Special care is being taken to ensure Aiden’s overall safety and comfort. Aiden is receiving appropriate doses based on his age and size. Also, he will receive potent chemotherapy agents (or combination of agents) in the hospital so that he can be more closely monitored. All other chemo treatments will be administered in the outpatient setting.

Given the new therapy decision, Dr. Chang still feels that Aiden should respond quite well to treatment – chemo, radiation and surgery. He also emphasizes that this decision is not based on anything new; a more conservative approach is just being employed. RMS in the diaphragm is very rare and we do not want to take any chances in regards to treatment, under treating Aiden could result in future recurrence.

Aiden has been responding to chemotherapy very well thus far; children truly are resilient. His strength throughout this whole ordeal is awe-inspiring. He is such a happy baby and continues to be the rock for Chris and me. I cannot help but smile when I see his chubby cheeks and wide-mouthed grin. He recovered so quickly after intubation. We were on the HEM/ONC floor only four nights before Dr. Chang decided to send us home.

This past Friday, Aiden was discharged from the hospital and we all headed home as a family. Since then we have been catching up on sleep and trying to find some semblance of our new normalcy. On Monday, Aiden, Chris and I headed to the Children’s National Medical Center outpatient office for Aiden’s scheduled chemotherapy treatment. Unfortunately, his port was not drawing back blood yet again. It is essential that Aiden’s port works properly. Dr Chang contacted the pediatric surgery department at Fairfax Hospital and scheduled Aiden for Mediport replacement surgery.

Aiden will be heading to the operating room tomorrow morning (his third surgery this month). He will get a new port and then we will travel to the Children’s outpatient office for chemotherapy. Though Mediport surgery is very quick, I am upset that Aiden has to go through it yet again. Please think about my little guy tomorrow and, as always, keep him in your prayers.

Love,
Leslie and Chris

New Entry Coming Soon

2010-05-24T06:42:00.001-04:00

I know it has been a while since my last entry so I wanted to post a quick message letting you all know that I do plan to offer an update very soon. Aiden, Chris and I have a very busy morning today as Aiden is scheduled for chemotherapy and we are meeting with his oncologist, Dr. Chang. Thank you all again for your continued support. It makes a world of difference and is helping up get through this extremely challenging time. Please keep a look out for the new entry later.

Prayers are always welcome.

With love,
Leslie and Chris

The Beginning of Our Journey - Photos

2010-05-18T22:29:00.000-04:00

Our sweet Aiden pre-surgery only a couple days after arriving at the hospital

(IFH Pediatric Med/Surg)

Mommy enjoying her very first snuggle post extubation

(IFH PICU)

Daddy holding his little man after many days in the PICU

(IFH PICU)

Our first smile session after extubation

(IFH PICU)

"Hey, Mama, puppy and I are trying to sleep!"
(IFH HEM/ONC)

Neutropenia

2010-05-17T16:59:00.000-04:00

The past few days have been a little rough. On Friday morning, Aiden’s sedation medications were turned off. He woke up a little later and his breathing tube was removed. The whole extubation process went well. It was the withdrawal process that we were not fully prepared for; though we were told it would be a trying course. Dr. Futterman and Dr. Vish, pediatric critical care physicians, said that many parents of critical care patients have a harder time dealing with withdrawal than the severe illness that brought in their child – at least in the short term. To help combat the symptoms of withdrawal, Aiden was given medication every three hours. Special consideration is taken during this time because every child is different – there is no standard course of action to dictate amount, frequency, and duration of these drugs.

Chris and I stayed up all Friday night to do our best to comfort Aiden. We experienced a few very difficult moments but were able to make it through with the support of the night nurses, residents and doctors. Symptoms of withdrawal may include, but are not limited to, fever, yawning, hand and leg movements, sleeplessness, mouth movements, gagging and diarrhea. Aiden experienced all of these indications but, at the time, his fever elicited the greatest concern.

Early Friday morning, before extubation, a sign was hung on Aiden’s door to highlight his neutropenic status. Neutropenia is a common side effect of Dactinomycin, one of the chemotherapy drugs he received during his first round of treatment. Neutropenia is characterized by a very low white blood cell count. The neutrophils found in white blood cells help our bodies ward off infections by destroying bacteria found in our blood. About a week after receiving Dactinomycin, Aiden’s white blood cell count began to significantly drop and have now reached zero. Special precautions have to be taken during this time to ensure that he does not come in contact with any bacteria or infectious people. He will probably be neutropenic until the end of the week. This will continue to occur about once a month for about a week or two following each Dactinomycin treatment.

Since Aiden started a fever on Friday, antibiotics were administered immediately. Low temperatures as well as high temperatures, even those only slightly above the norm are worrisome when a person does not possess the necessary white blood cells to combat illness. Aiden was immediately started on two strong antibiotics. Even though his fever may be withdrawal induced, we do not want to take any chances. Blood work was sent to the lab to test for bacteria but takes at least 24-48 hours for results.

By Sunday, Aiden really started to come out of withdrawal. He had been up for 50 hours straight and at around 2:45 in the afternoon, he finally decided to sleep. He actually slept well into the evening and awoke with a smile on his face. Chris and I were elated to see the sweet gummy grin! He is continuing to do well, though, he currently has another fever. As long as he remains stable today we will be moving to the HEM/ONC floor tonight! They deal with neutropenic fevers often so we do not have to stay in the PICU to tackle that obstacle.

Thank you again for all of the encouragement, even when we are a bit unreachable. We look at the prayer circle and websites often - all of your kind words and prayers comfort us when we start to become a bit overwhelmed. Also, thank you all for understanding that we cannot have visitors right now, even when we move to HEM/ONC. Aiden is just too susceptible to germs. Once his counts start to go up and we get more instruction from oncology we will let everyone know. I want to also take a moment to thank everyone who has set up various fundraisers for Aiden. The support and outreach is amazing and we will forever be indebted to you all for your generosity and caring attention.

We are continuing to move forward and stay as positive as possible. We pray for Aiden’s swift recovery and strength throughout treatment. Please keep him in your prayers as well. Thanks again for everything.

God bless,
Leslie and Chris

Facebook: Aiden’s Prayer Circle
Website: www.helpbabyaiden.com

Still Awaiting Port Placement

2010-05-13T21:09:00.000-04:00

Mediport placement surgery did not happen yesterday. Chris and I received a call from Aiden’s Oncologist, Dr. Chang, explaining that Aiden needed a MRI to identify the original volume of the tumor. This is essential for radiation planning. Radiation oncologists use radiation beams to intersect at the tumor site or original area the tumor occupied. (We hope that the tumor has shrunk some due to chemotherapy by the time we begin radiation.) We are not yet certain of Aiden’s radiation schedule but we do know that we will be traveling to Boston so that he can receive proton beam radiation therapy at Massachusetts General Hospital. Proton beam radiation is especially importation for young pediatric patients because the radiation dose can be more precisely localized which helps reduce scatter. Aiden may receive 6 weeks of radiation therapy (5 days per week), but as I mentioned before, we have yet to confirm all the details. Dr. Chang wants Aiden to be a bit older and have a few more rounds of chemotherapy before we start radiation.

Since his MRI occurred mid-day yesterday we were not able to get him into the operating room for surgery. He is on the schedule today for port placement and may head to the OR around 6:00 this evening, but we are still awaiting final confirmation. This should be a very quick procedure and we hope to extubate following surgery while he is in recovery. If he gets out of surgery too late, though, we will have to wait until tomorrow morning to remove his breathing tube.

Following extubation, we will have to address Aiden’s medication dependency. Aiden has been on quite a few medications for sedation and pain so we will be weaning him off those over the next couple of days. If all goes well, we may be heading to the hematology/oncology floor tomorrow or this weekend!

Over the past couple of days, a few people have inquired as to whether Aiden will need surgery to remove the tumor. At this point in time, we are sticking to the chemotherapy/radiation regime. His tumor is a solid mass and is very vascular in nature (heavily endowed with blood vessels). If we were to go in now and remove it, bleeding would become a concern. During Aiden’s first surgery, he ended up getting a transfusion because he had already lost so much blood. We do not want to knowingly put his body in that position again. It is best to shrink the tumor down and discuss surgical options later.

The power of prayer and positive thinking is amazing! Thanks for keeping Aiden in your hearts. We will continue to keep you all updated. Also, keep your eye out for several fun events coming up this summer to celebrate the strength of my little fighter.

All our love,
Leslie and Chris

Aiden's Shirts- Order Now!

2010-05-13T13:14:00.000-04:00

Aiden's Shirts are READY TO BE ORDERED :-) Yay!!

To order a shirt, please do the following:

1. http://www.olivetosew.com/ (Click this link)

2. Click on the "Aiden Lipscomb" link on the left hand side

3. Choose a size (Adult sizes S-XL; Youth Sizes S-L; Toddler Sizes and Infant Onesies available)

4. Make sure to select OUT OF STATE shipping EVEN if you are in the NoVa area. This will add back the price that the current sale price is taking off.

Once we get most the orders in, we will order and have them for delivery in about 2-3 weeks. All proceeds will go to the Lipscomb's for their medical bills and to help pay for their medical trip to Boston in a few months.

Thank you to EVERYONE!!!

Kere Knapp

Surgery Today

2010-05-12T09:04:00.001-04:00

Aiden ended up not getting a bronchoscopy Monday morning as planned. Dr. Craig Futterman, pediatric critical care physician, decided that he wanted to do an ultrasound first to make certain the procedure was necessary. He performed the initial ultrasound himself and then called in Dr. Nakul Jerath, pediatric radiologist, to also take a look. Dr. Jerath noted pockets of fluid around the upper part of his lung. When examining the lower region, he observed the tumor occupying much of the space. After the procedure, Dr. Futterman and Dr. Jerath then consulted with the team of physicians treating Aiden. It was unanimously decided that Aiden did not in fact need a bronchoscopy. Since the bronchoscope would go down his trachea it would not be able to get past the mass. Plus, we already know that pockets of fluid are present; the bronchoscopy would duplicate efforts in that respect.

The best thing for Aiden now, is to get him breathing on his own. Even though his right lung is not able to expand yet – due in most part to the mass – his left lung is functioning very well. We are able to survive on one lung and it is believed that Aiden was doing so for a little while before we brought him to the hospital. Extubation should give Aiden’s lungs the opportunity to work and heal on their own. We expect much of the fluid to resolve with a little time and the mass should start to shrink, with the help of chemotherapy, over the next several weeks. His chest x-ray actually looked a bit better today (in the uppermost region of the lung) which is good news. Now we are finalizing our plan for extubation.

When Aiden was in surgery last Tuesday a central line was placed to make medication easy to administer. This made sense at the time since we thought we were dealing with an infection. His central line now serves a different purpose – chemo purveyor. Unfortunately, central lines are not permanent and can cause complications if left in too long. Since Aiden will require weekly intravenous medications, a more permanent port is necessary. A port is a very small medical appliance that is placed under the skin. A catheter then connects the port to a vein. Aiden will be going into surgery today to receive his port. As long as he wakes up well from the anesthesia, he will be extubated following recovery. I cannot wait to see his big brown eyes.

Following extubation, Aiden will be further weaned from many of his pain and sedation medications. This is a slow and sometimes unnerving process as he will be uncomfortable and likely not recognize us as his body goes through withdrawals. The doctors have reassured Chris and I that this is just temporary and our sweet baby boy will be back to himself very soon. As long as Aiden recovers well and we do not run into any complications, we should be moving to the Hematology/Oncology floor later this week.

Thank you again for thinking of us – especially my amazing baby boy. Your prayers are getting us through the difficult moments and helping us cherish every little miracle. The number of visitors to this blog as well as Aiden’s website never ceases to amaze us. Also, thank you all so much for joining his prayer circle on Facebook. We are just shy of 550 members, which is remarkable since the group was only created a few days ago.

More prayers are always welcome.

God bless,
Leslie and Chris

Aiden's new logo...

2010-05-11T11:31:00.000-04:00

Jen Kwiatek and I are working on ordering shirts for hopes of raising some money for the Lipscomb's. If you are interested in a shirt, please let us know. We will have kids shirts and onesies. We would initially like for people to wear them at the fundraisers which will be held over the next few months (more info on this will be announced soon!) Here is Aiden's logo for the shirts. The Gold/Yellow ribbon signifies "child cancer". We will have a paypal button connected to the Lipscomb's to order the shirts in the next few days. Please keep an eye out for that information.

Thanks everyone for your continued support!!

Kere Knapp

New Pics of Aiden

2010-05-11T11:24:00.000-04:00

Cute lil' Aiden...

Aiden at 2.5 months

2010-05-11T11:06:00.000-04:00

Here's cute little Aiden at 2.5 months.

Wonderful News – Localized Tumor

2010-05-10T10:30:00.000-04:00

We received some amazing news, the bone marrow biopsy showed no presence of cancer!

Dr. Chang called us during his weekend off to share the findings. Since Aiden does not have metastatic disease we are moving forward with a 43-week chemotherapy schedule which will later incorporate radiation and may include surgery. Chemotherapy is used to attack cancer cells which divide very quickly. Normal, healthy cells – on the other hand – grow in an orderly fashion and replace old or damaged cells. Aiden’s chemo is being administered intravenously (right into his vein) to combat the rapidly-growing, out-of-control cells.

His regimen consists of three drugs: VinCRIStine, Dactinomycin and Cyclophosphamide – also known as VAC. The VinCRIStine and Dactinomycin are quickly pushed through an IV, while the Cyclophosphamide is administered slowly over a 60 minute period. Most chemo side effects, if any, appear about 10-14 days after the drugs are administered. Children are quite resilient, though, and tend to tolerate chemotherapy quite well – usually better than adults. Aiden had his first round of chemo Saturday night and has responded well to the drugs. We pray that he continues to tolerate these drugs over the 43-week course. I am very proud of my little man.

Currently, the more pressing matter happens to be Aiden’s respiratory condition, not his cancer. Aiden is still using the ventilator to breathe. His daily chest x-rays have not shown improvement since the day following his surgery (last Wednesday). The drainage from his chest tube slowed considerably so Dr. Askew decided to have it removed. Now we are trying to understand why the right lung is not recovering. Pediatric Pulmonologist, Dr. John Osborn, is performing a bronchoscopy on Aiden Monday morning. He will use a bronchoscope to visualize Aiden’s airway and hopefully uncover why the right lung will not expand. I pray that we discover the problem and are able to remedy it without difficulty.

We will continue to be in the PICU until he can breathe on his own. The doctors and nurses here have been amazing – they now feel like extended family. “Residing” in intensive care is not easy, but Chris and I do not want to leave our munchkin’s side. We have turned the window-seat and pull-out-chair into a makeshift bedroom, which suits us just fine. Honestly, I would sleep on the cold, hard hospital floor if it kept me close to my baby. Once we are in the Hematology/Oncology wing (when Aiden is breathing-tube-free), our living situation should improve a bit and hopefully we will be able to entertain a visitor or two. The PICU policy states only 3 people in the room at a time – since Chris and I are both here that leaves only one available space! Luckily the nurses have let grandmas and grandpas visits pretty easily, which is such a blessing – Chris and I have definitely needed them close during this difficult time.

As always, please keep Aiden in your prayers. I am certain that all of the praying thus far has contributed to the small miracles we are experiencing each and every day. Thank so much for your support. I have been reading all of your emails, messages, comments and texts every day and each communication truly touches my heart. I truly feel blessed to have each and every one of you in our lives.

Be sure to check out the website that Aiden’s Uncle Steve and Aunt April created (helpbabyaiden.com) as well as the prayer circle established by Aunt Lisa (Facebook: Aiden’s Prayer Circle). I want to also take this opportunity to thank my dear friend, Kere, for sending out emails, taking calls and putting together this blog.

Please continue to pray for baby Aiden.

Much love,
Leslie and Chris

Rhabdomyosarcoma

2010-05-08T09:10:00.000-04:00

Today we met with Aiden’s Oncologist, Dr. Patrick Chang, to go over the results of the tumor biopsy. He has a cancer called rhabdomyosarcoma (RMS) which is a type of cancer that occurs in the soft tissues of the body like muscles. Aiden’s tumor grew out of his diaphragm and reached just under his right lung. The tumor started bleeding which is why the area surrounding his right lung looked hazy on the x-ray taken last Sunday (air shows up black, tissues are organs look gray and bone is white). Thankfully, this bleeding also caused Aiden’s respiratory rate to increase which caused us to make a trip to the hospital.

During surgery this past Tuesday, Dr. Allyson Askew, our pediatric surgeon, cleaned out the blood filling his pleural cavity and inserted a chest tube to help with post-operative drainage. She also sent a piece of the tumor to pathology for diagnosis. When Aiden left the operating room he was sent to recovery for a short time and was then transported to the pediatric intensive care unit (PICU). We are still currently in the PICU as Aiden is not yet able to breathe on his own. All patients that are incubated receive a daily chest x-ray to make sure that the tube does not shift. This x-ray also helps us monitor his pleural cavity and right lung.

Aiden is currently suffering from SAIDH which stands for Syndrome of Inappropriate Antidiuretic Hormone. Basically, Aiden’s body is retaining water so he has fewer wet diapers and a slightly puffy appearance. Since we are not seeing improvement on his daily chest x-rays, we think that SAIDH may also be contributing to fluid build-up in his right lung. The composition of our lungs can be compared to a sponge – when dry, it is light and airy, but when the lung is wet, it is very heavy. Aiden is now receiving diuretics four times a day and he is already showing improvement. Hopefully his chest x-ray tomorrow will display similar results! I cannot wait for him to be off the ventilator. Some children can tolerate breathing tubes, but Aiden does not appear to be one of them. He does not like it one bit so we are keeping him well sedated until he is able to be extubated.

Yesterday afternoon Aiden received a bone scan which is a nuclear medicine study. He was injected with a radioactive tracer which goes through the blood and then into the bones. A special camera then took pictures of his cell activity. This scan can show if cancer is present in the bones. We heard soon after the study that his test had negative findings – no cancer was present in his bones. Aiden then received another bone marrow biopsy. During the first biopsy, Dr. Chang was only able to obtain a small sample so he decided to perform it again in hopes of gathering two larger samples. He was successful in doing so and we hope to hear those results tomorrow. PLEASE PRAY that the pathologist finds no presence of cancer in his marrow. Should this test come back negative, we are pretty confident that he does not have metastatic disease. (A CT scan was also performed earlier this week which showed no additional tumors.)

If the bone marrow test is negative for cancer, Aiden’s prognosis is extremely promising. We are most likely joining a clinical trial which is researching rhabdomyosarcoma. It is important to Chris and me to do what we can to help future children that are also diagnosed with RMS. I won’t go too in depth regarding treatment plans as it is very dependent on the marrow results. Regardless of the marrow findings, though, Aiden will have to get several months of chemotheraphy. Once he is a bit older he will also need radiation therapy treatment, which will most likely take us to Boston. Right now, though, we are very hopeful and doing what we can to remain positive for the sake of our little man.

Aiden is a fighter and will make it through this – we all will. Cancer has now touched our lives, but it will not beat us. Aiden, Chris and I are up for the fight and nothing in this world will be able to stop us. Love and trust in God is what gives us hope. Thank you all for your prayers and kind words. The support continues to astound us – we are just so grateful for each and every one of you. Aiden is our everything and I look so forward to seeing his sweet gummy smile again very soon.

Please keep the prayers coming. Thank you again.

All our love,
Leslie and Chris

Waiting Game

2010-05-06T12:30:00.000-04:00

The bone marrow biopsy yesterday went ok. The oncology doctor said he got some good samples to use and he sent those down to get tested. We are still waiting on results from them about whether this has moved into the bones. We are hoping to hear about those results today, Friday at the latest. The night went ok with Aiden and Chris and Leslie were able to get in a few hours of sleep.

We have not been given an address/room number yet since he is still in the PICU. As soon as they move them out of the PICU into oncology, they will provide us with that information and we will post it for all of you that have asked where to send things.

We will update as soon as we hear more.

Thank you again for all the outpouring of support. It's truly helpful knowing that there are so many of you who have offered support in so many ways!

Diagnosis Pending : Sarcoma

2010-05-06T12:12:00.000-04:00

Hi Again!

Aiden had his CT Scan at 3:30am and we didn't hear anything until about 11. We met with the oncologist and the conversation was very positive! There were three diagnoses they gave for what it could be. The one that they are pretty sure what it is is muscle cancer which is the most common type of this cancer they see. He was very optomistic about the outcome of what the course of action would be.

Right now, they are doing a bone marrow test to see if the cancer has spread to the bones. One of the tests will have results immediately and the other result will come back within 48 hours. They do not see any other tumors in the body besides this one, so that is very positive! It also is not in his lungs or his heart cavities so that is great too!

They do hope to at least get the chemo started on Friday. They are saying to expect for them to stay here for a minimum of a few weeks if not longer in the oncology department. As soon as I get the room number/address I will send that out.

It's still a little waiting game but seems like the answers will be back in a few days. But the news we have gotten has been the best we could have gotten so far, so that's great!! Spirits are better from the meeting with the oncologists and the doctors have so far been fantastic and very knowledgeable.

Thanks for all your prayers, thoughts and messages. I have passed all along to Chris and Leslie (it's keeping us busy transcribing them back and forth and helping keep the spirits up and laughter going. I joked I should start an album of some of the convo's going back and forth :-) )

Thanks to all of you! I will keep updating...
Kere

Preliminary Determination

2010-05-06T12:02:00.000-04:00

Good Evening-

I'm sending out an update on Aiden's status for Leslie and Chris because many of you have asked how is doing and they are not/will not be responding/checking emails, phone calls or texts.

Aiden had his surgery this afternoon and the news that came back was a little more than what was expected. The doctors went in and found that the fluid in his lungs was not fluid related to pneumonia but was in fact blood. When they went in further to determine what the cause of it was, they found a tumor in the diaphram. Half the tumor came out and from the look of it, the doctors said it was malignant. They sent it to be biopsied for an actual confirmation of this, but as of now that is the information they gave us. He has been moved to the PICU and is in stable condition. He was in stable condition the whole time during the surgery. After the surgery he was in good spirits and was acting like fun loving Aiden.

We are hoping that they will be able to get him in for a CT Scan tonight to determine if there are any more tumors and to basically get more information. As of now, it is a waiting game. Last check on him, he was sleeping and looks peaceful. We are all hoping for some good results that there are no more tumors. Where it goes from here, we don't know.

We will let you know as soon as we hear any more news. As of now, the hospital is not allowing visitors, but we will let you know as soon as they change this. If you have any questions or concerns you would like me to pass on to Chris and Leslie, please direct them to me here at kereth23@yahoo.com as they are not checking/responding to emails, answer phone calls or texts, etc.

Please keep all of them in our prayers as we wait to hear more.

Thank you!

Kere Knapp

Start of being sick..

2010-05-06T11:53:00.000-04:00

Hello,

Chris and I want to let you all know that we had to take Aiden to Fair Oaks Hospital yesterday afternoon. As many of you may know, the entire household has been sick with a pretty bad bug. Chris came down with cold-like symptoms two Thursdays ago and then Aiden started coughing that weekend. Last Tuesday vomiting ensued so we took him into the doctors early Wednesday morning. The nurse actually swabbed him for strep (even though strep is quite rare in babies) and the test ended up coming back positive. The doctor put him on antibiotics and told Chris and I to make appointments with our primary care physicians. Chris was diagnosed with strep later that day, but my test came back negative.

This past Sunday I noticed that Aiden was breathing rapidly. He didn't display any other signs of illness, though - no fever, no vomiting, a pretty dry cough. I counted the amount of breaths he took in a minute’s time and realized that his respiratory rate was over 70 (it should be around 40). We took him to the hospital for evaluation. At Fair Oaks he was given an IV, a chest x-ray and nebulizer. The ER doc said that the x-ray was abnormal (he has more than just a "touch of pneumonia") so he ordered transport to Fairfax Hospital. The ambulance took Aiden and I a few hours later.

Inova Fairfax Hospital for Children has been amazing, which is such a relief given the already overwhelming and emotionally draining situation. We have met with a pediatrician, radiologist, pediatric pulmonologist, infectious disease physician and pediatric surgeon. All of these doctors have helped us understand what is happening. Aiden's x-ray was very hazy on his right side, which means that fluid is present. Later we had an ultrasound to help better determine the consistency of the fluid. Since ultrasound does not give a 3D picture and the findings were suspicious, our team of physicians have decided to move forward with surgery. The pediatric surgeon is going to place a chest tube to drain the fluid and clean any debris. She will then insert a tiny camera to look around. Since Aiden has not presented with any traditional signs of pneumonia other than an elevated respiratory rate, we need to make sure that there is not an underlying condition causing this illness. There is also a worry that this may be necrotizing pneumonia, which involves the actual tissue of the lung itself. The surgeon will address these concerns during the exploratory portion of the surgery.

Despite all that is happening, Aiden has been in very good spirits. He is smiling, laughing and enjoying all of the attention!! Chris and I feel truly blessed to have such a wonderful support network and appreciate all of the help, well-wishes, and prayers that we have already received. Our little man is quite the trooper and helps keep his mommy and daddy grounded. We love you all and will do our best to relay updates.

Please keep Aiden in your prayers.

All our love,
Leslie and Chris

Aiden Lipscomb

NEW WEBSITE WITH BUILT IN BLOG!!!!

Upcoming Events!

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

Perspective and a Few Updates

Updates Coming Soon!

Aiden's Auction is this Saturday!

Quick Update: Hospital Admission Delayed Until Thursday

Short Treatment Break, New Chemo, Neutropenia and Much More

Delay in Posting

So Much News To Share

New Post Soon!

Ambulance Ride to Fairfax Hospital and Aiden's First Word

The Week in Review and Fundraising at Cici's Pizza

Post Mediport Surgery and First Week of Daily Chemotherapy

Update Coming Soon!

New Chemotherapy Regimen & Mediport Replacement Surgery

New Entry Coming Soon

The Beginning of Our Journey - Photos

Neutropenia

Still Awaiting Port Placement

Aiden's Shirts- Order Now!

Surgery Today

Aiden's new logo...

New Pics of Aiden

Aiden at 2.5 months

Wonderful News – Localized Tumor

Rhabdomyosarcoma

Waiting Game

Diagnosis Pending : Sarcoma

Preliminary Determination

Start of being sick..

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