So Much News To Share

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!




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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.



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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!

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

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

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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

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

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!

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!