Iron Aiden

TEMPORARY BLOG WHILE UPDATING THIS SITE!

by Leslie Lipscomb on 02/27/12

Hi everyone,

I have FINALLY written a blog post.  Since I am updating this website, I have decided to use my blogger account in the interim.  Please visit http://rallyforaiden.blogspot.com/ for now.  I will keep you all updated!!

With love,
Leslie

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Updates Aug 25th - Sept 9th ... Includes MRI & CT Evaluation

by Leslie Lipscomb on 09/09/11

September 9, 2011: Results - Post Treatment MRI & CT

Aiden was such a trooper yesterday.  He was a little cranky waking up from the sedation after his testing but still enjoyed taking a trip upstairs to see all of his nurse friends on the HEM/ONC floor.  He took a very long nap during the afternoon while I tried, though unsuccessfully, to rest next to him; my mind was in overdrive and simply would not stop running.  I was exhausted, anxious and could feel the onset of a stress headache.

Chris arrived home early from work so we were both able to hear the results from one of Aiden's doctors over the phone.  We were told that his MRI looked good and only a slight thickening was visible (as noted in previous scans) which most-likely represented scar tissue from prior treatment.  His CT, however, revealed a ride-sided pneumonia. 

At that moment, my mind went right back to the beginning of May 2010.  At that time, Aiden was diagnosed with a right-sided pleural effusion (complicated pneumonia) which turned out not to be an infection at all, but cancer. (Read Aiden's story at www.journey4acure.org/declans_corner_aiden and follow his blog at www.rallyforaiden.com/Blog.html.)

Yesterday evening, though, his doctor reassured us that the pediatric radiologist was confident in his findings and that we could go over the images in more detail at Aiden's Friday morning appointment.  Last night was the first time I have ever hoped Aiden would get a fever.  As a worried mother, I needed to start seeing signs of pneumonia in an effort to have it all make sense in my head.  Aiden, however, remained asymptomatic.

Aiden was his normal busy self upon arriving at the clinic this morning.  He was in good spirits, unaware of the knots twisting and turning in my stomach.  Fortunately, those big brown eyes of his have an uplifting effect.  I can't help but smile when I watch him play and laugh.

Aiden's doctor went over the images and explained, in detail, why airspace disease is likely.  On a CT scan, bone will look white, air/fat appear black and tissue/muscle will look gray.  The area in question on Aiden's scan looked hazy, representative of a pneumonia.  The fact that Aiden is not presenting with symptoms is not a huge concern either.  Imaging today can pick up even very mild infiltrates.  At this point, we are not treating Aiden with antibiotics.  Should he start to develop symptoms of pneumonia, medication will be our first course of action.

Both the MRI and CT interpretations by the pediatric radiologist, stated that pleural thickening is visible but due most-likely to postoperative scarring/prior therapy.  The MRI report stated "no suspicious mass is identified" and the CT report read "no suspicious pulmonary nodular densities are demonstrated although evaluation is limited by the right-sided infiltrates."  These findings are hopeful and give us even more reason to move forward with the PET as it will be able to offer a little more insight. 

*Hopefully* next week, pending insurance approvals, Aiden will get a PET scan at Georgetown Hospital.  The PET will be able to again confirm whether the likely-pneumonia is actually pneumonia.  It will also tell us if the frequently noted "pleural thickening" is active.  We are, of course, hoping that it is not active and that nothing out-of-the-ordinary lights up on the PET scan.

Chris and I do not like to identify Aiden  by his cancer diagnosis because he is so much more than that; stage four rhabdomyosarcoma does not define our child, nor does it define our marriage, or our lives.  Letting that happen would give this disease way too much credit.  Aiden is a thriving toddler with a heart of gold and a strength of will unlike any we have ever witnessed before.  Even though the evaluations tend to get to us, for obvious reasons, we are still taking each day as it comes.  Every moment we are able to find happiness and something to celebrate no matter how small, we just have to take the time to stop and look.

As soon as we have details pertaining to Aiden's upcoming PET scan, we will let you all know.  Thank you all from the bottom of our hearts for continuing to rally for Aiden.  The prayers, good vibes, and all-around love give us so much strength.

With hope, love and faith,

Leslie (Aiden's Mommy)

September 8, 2011

Currently at Fairfax Hospital waiting for Aiden to finish up his MRI and CT studies. Thanks to my mom for accompanying us; it is really nice having the company. I am praying (as always) for my little man on this anxiety-filled morning. Thanks to everyone who continues to Rally for Aiden! We will keep you all updated.

September 6, 2011: Updates - Counts & Imaging This Week

Aiden had a quick blood draw this morning to check his counts.  (As you can see in the photo he is quite intrigued by the band-aid.)  His ANC and hemoglobin are both up, which is wonderful!!  His platelets are a little lower but not low enough for an infusion.  We are hoping that his blood counts will continue to recover as expected.

Last Thursday, Aiden had an EKG and echocardiogram done at Pediatric Cardiology Associates.  Due to all of the treatment he has received over the past 16 months, we will have to closely monitor Aiden's heart.  Fortunately, both studies came back normal.  We will return PCARDVA in another few months to check again.

This coming Thursday, Aiden is scheduled for his first post-treatment MRI and CT scan.  He will be sedated so we will be arriving early to Fairfax Hospital.  As long as both imaging studies come back clean, he will then be scheduled for a post-treatment PET scan.  (Imaging has to be done in this order because of stipulations set forth by our insurance.)  Positron emission tomography, also known as PET, is a type of nuclear medicine study that uses a radiotracer to detect "hot spots" in the body.  This will enable Aiden's doctors to determine whether or not any active areas of concern are present.  Aiden will have to get his PET scan at Georgetown Hospital since GH is the only facility in the area to offer sedated PET studies.

Needless to say, all of the upcoming imaging/testing has my stomach in knots.  Evaluative imaging always takes a toll on my nerves.  Chris and I, as well as the rest of our family, are doing what we can to remain upbeat and optimistic, but your good vibes and prayers really would help keep our spirits high during this anxiety-ridden time.

As always, thank you for all of the continued support.  I hope to *finally* finish my blog post about Aiden's completion of radiation and chemotherapy sometime soon.  We are still trying to get settled after a very busy summer.  Things are starting to fall into place, though, and we are so looking forward to all the great things this autumn will bring. 

With love and hope,

Leslie (Aiden's Mommy)

September 2, 2011

Quick Update: After a count check this morning, ANC and hemoglobin are lower than Monday so infection control and potential anemia are still a concern. Platelets are up, though, which is a good thing. The count rollercoaster we are on is all completely normal as Aiden's body is recovering from months of treatment. Hopefully, all counts will be up by Aiden's blood draw on Tuesday!! :)

September 1, 2011

Are you aware? Please spread the word! Thanks to all of you who Rally for Aiden and Journey 4 A Cure!!!! We are always thinking of all the brave childhood cancer warriors, survivors and angels.


August 31, 2011

Hi everyone, please take a moment to "LIKE" Children's National Medical Center! Aiden has been treated by this group since his diagnosis and has only received the very best care. Please "like" their page so that all the CNMC kiddos can keep getting the amazing treatment they so deserve!

August 30, 2011

Quick Update: Aiden's platelets and hemoglobin seem to be going up, which is great news. His ANC on the other hand, has gone down since his last blood draw. It looks like we will not be letting our germ control guard down just yet. Aiden has been feeling good, though, and even slept in his toddler bed the past three nights!! As always, thanks for the prayers and positive thoughts!!

August 29, 2011

Quick Update: Aiden has a scheduled clinic appointment tomorrow to monitor his blood counts. We want his counts to be trending up (or at least stable). He had a very nice weekend so we are hopeful. Aiden and mommy are looking forward to getting out and about a bit more. :)

August 25, 2011

Thanks to Flying Magazine for the post about Aiden. Hopefully our story will help other families in need of air transport. Again, the support has been nothing short of amazing.

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Iron Aiden Finishing STRONG!! (last round of chemo on protocol)

by Leslie Lipscomb on 08/28/11

August 22, 2011

Here are a few pictures after Aiden received his last round of chemotherapy on his treatment roadmap!

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A Brief Website Message and Facebook Updates!

by Leslie Lipscomb on 08/19/11

I hope to start using a new site host for Aiden's blog/website very soon.  The domain name (www.RALLYforAIDEN.com) will not change.  Hopefully, the site will be more user-friendly and easier for me to update on a regular basis.  I was approached by an extremely kind Iron Aiden supporter last year who offered to help us make the transition.  She paid the hosting fee and connected us with her good friend who starting to move our site, pro bono, to a new host...two amazing ladies. :)

Well, I now plan to get on the ball and make the changes I need to make so that the new and improved RALLY for AIDEN.com can actually go live!!

In the meantime, I will do my best to post timely updates.  Facebook, though, has proven to be a much easier mode of communication since my current blog host is cumbersome at best to use.  Below are all my recent Facebook posts so that everyone (even non-Facebook-users) can get up-to-date!

Best, Leslie

August 19, 2011

Aiden is enjoying a big lunch after finishing up his 2nd to last round of chemotherapy!! He will complete the last round of chemo on his roadmap this Monday. It is a quick one so he should be all done early in the day!! (Did you happen to notice the is the absence of his NG tube? Yep, Aiden is eating 3 meals a day, with snacks, and plenty of water all on his own! His NG has been out since early this week...so far, so good!!)

August 16, 2011

A message - and invitation - from Kiran Ferrandino on behalf of the Carmicals and the Withers Grove Court family. This is a special way to honor precious baby Declan as well as his amazing parents...

* * *

Aiden started his 2nd to last round of chemotherapy this past Monday. We will be in the clinic the rest of the week as this is a 5 day course. He is doing pretty well, despite some restlessness at night. This particular chemo causes bad stomach upset, which Aiden tends to feel on days 4 and 5 of treatment as well as the week following. Updates coming soon!

August 13, 2011

Aiden has already accomplished so much over the past 20 months and now he is doing what he can to help make a difference. Our brave little guy did a wonderful job during his mini NBAA photo shoot yesterday. :)

* * *

A BIG THANK YOU to the Aviation Community!

Thanks again to the everyone who helped get Aiden home: NBAA, Journey 4 A Cure, C&S Wholesale Grocers Community Involvement, Signature Flight Support Corp., and Sky Hope Network.  Thanks to Meridian Air Group, Inc. for also helping to spread the word; you all were wonderful to fly us out to Boston when Aiden started treatment!  C & S Grocers, thank you for offering your plane and for the special bag of goodies left for Aiden! We also want to offer a warm thank you to Jo, Eve, our C&S pilot - Joe, our C&S co-pilot - Nathan and our good friends- Beth, Sherri and Stan.  Lastly, A HUGE THANK YOU is owed to the whole aviation Facebook (and non-Facebook) community!! Our hearts melted every time we saw a post about Aiden. If we accidentally left someone off this thank you message, please know that we appreciate every single effort that was made to help get our "Iron" Aiden home.

August 12, 2011

Aiden REALLY enjoyed ringing the bell to celebrate his completion of proton beam radiation; he loved it so much that he did not want to let go!! Thanks to everyone at MGH who helped make our time here so comfortable. We will miss you all!

* * *

All of us at Rally for Aiden and Journey 4 A Cure give a HUGE thank you to Angie Goff of WUSA 9 for her help in spreading the word about the Vivint Gives Back Project! Have you voted today? Please visit www.vote4acure! Thanks for everything, Angie!

* * *

Aiden is about to get his last radiation treatment this morning and then we are heading home to VA this afternoon! Mommy and Daddy are so proud of our brave little guy!

August, 10, 2011

Upon completion of proton beam radiation at MassGeneral, Aiden and Mommy are flying HOME to VA this Friday! Thanks to everyone who helped make this flight happen: Sky Hope Network, National Business Aviation Association, Signature Flight Support Corp., C&S Wholesale Grocers Inc. and many, many more!! At home, Aiden will now be able to receive his second to last round of chemotherapy - a 5 day cycle - starting this coming Monday! Aiden, Daddy and Mommy are so very humbled and grateful for all the support! THANK YOU!

August 9, 2011

Aiden did not make counts yesterday. His platelets were a little too low to move forward with chemotherapy. This is all too be expected, though, as my little guy has had a lot of treatment. We are planning on trying again next Monday at the Children's outpatient clinic back HOME! Yes, after Aiden COMPLETES proton beam radiation we will be packing up our Boston apartment and heading back to Clifton, VA!

August 8, 2011

At the proton center...hoping Aiden makes counts this morning so that we can head straight for chemo following radiation! Come on platelets!!!!

August 5, 2011

Quick Update: Aiden's platelets were still too low for chemotherapy this morning. We are now aiming for Monday. If he is not able to start chemo at that time, we will probably be in Boston a little longer so that he can complete the 5-day chemo cycle (once his platelets permit). On a very happy note, next week marks week six of radiation; Aiden will end proton beam on Friday!! Thanks for all the support. An updated blog post is still coming soon!!

August 4, 2011

Quick Update: Aiden has been doing okay these past few weeks, though his blood counts have been riding quite the rollercoaster. He was due to start his second to last round of chemotherapy on Monday but his platelets were not ready to begin. After daily blood draws (before morning radiation), he still is not ready to start the 5-day cycle of Irinotecan. We will test again tomorrow, but it looks like his start day will likely be Monday. If we stay on that schedule, then he will finish out Irinotecan and radiation on Friday. We may have to stay in Boston a little longer, if he does not make counts next week. We will keep you all updated! Plus, a new blog entry with many pictures will be coming soon!

July 27, 2011

Aiden devouring a post-radiation doughnut! :) Having to go without food prior to sedation sure makes my little man hungry!!

 

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Proton Beam Radiation - Weeks 1 & 2

by Leslie Lipscomb on 07/15/11

Aiden started proton beam radiation right after the July 4th holiday.  He is the youngest patient currently getting this treatment at MassGeneral Hospital for Children.  I always stop his nightly feeds six hours before his next scheduled appointment (he can get clear liquids two hours prior) due to the NPO requirements of sedation.  To help ease the stress of this, young patients always go first.  Aiden usually arrives at the center around 7:30 in the morning so that things can get started without delay. 

Aiden begins our morning routine by playing in the pediatric waiting room.  The kitchenette set is by far his favorite.  A few minutes following our arrival, Aiden's nurse, Rachael, comes to get him.  He loves Rachael and always follows her down the hall, spatula usually in-hand. 

The pre/post sedation room is amazing, in a very un-hospital-like way .  Doors are adorned with cartoon posters, brightly colored stuffed animal monkeys hang playfully from IV poles and Nemo - along with his fishy-friends - swim about the walls.  Aiden gets to play with countless toys while getting his vitals taken and loves blowing bubbles before receiving his sedation meds.

Once in the treatment room, while holding Aiden in my arms (though he is usually trying to carry on robust conversations with his medical team), he receives propofol via IV which quickly relaxes and sedates him for the procedure.  After laying him on the table I give him a big kiss and then head back to the waiting room.

The radiation process only takes about 30 minutes.  Once Aiden is back in the post sedation room and begins to stir, I am asked to come back and sit with him while he fully wakes up.  I have come to learn that this very much depends on the day as many variables come into play.  Sometimes Aiden wakes up happy and ready to run (he is still quite wobbly though so I don't actually let that happen).  Other times Aiden is crabby or just wants to sleep longer.  Fortunately, he has been tolerating propofol very well and wakes up rearing to go!

This past week following Days 5-9 of proton treatment, Aiden received chemotherapy in the Pediatric HEM/ONC Clinic located in the building next to the Proton Center.  He has now finished week 47 of chemo which means that he has 7 weeks left on his treatment roadmap and only 3 rounds of actual chemotherapy!  Aiden has finished the chemo agents that are known to cause severe neutropenia but since we are towards the end of things his blood counts seems to be recovering rather slowly.  After his last count check he is again neutropenic and may need a blood transfusion early next week.  At this point, low counts are par for the course. 


Aiden sure doesn't let them get him down!  Almost every night this week we have walked throughout the labyrinth of paths located just behind our apartment building.  Aiden thoroughly enjoys exploring his new surroundings.

Last night was probably the first night since we have been here that I noticed Aiden displaying signs of discomfort.  He is still tolerating radiation well (side effects such as skin irritation may become more noticeable later in treatment); it is the chemotherapy that is bothering him now. Round 47 of chemo consisted of Vincristine and five days of Irinotecan which is very tough on the GI tract.  Aiden's digestive system simply did not cooperate with him last night, consequently causing him to toss, turn and cry out.  I too was not feeling my best so adorned in a surgical mask and freshly sanitized hands, I let him snuggle in my arms all night long.

Today Aiden has been doing pretty well.  While I visited the MGH Walk-In Clinic for a strep test (which came back negative...seems I have a virus), my parents (on their last day in Boston) took Aiden to his appointments.  Fridays are toy day at the Proton Center so Aiden came home proudly displaying his new Elmo Lego set.  Tonight Chris, Aiden's daddy, arrives to spend another weekend with us!  Aiden and I are so excited to see him! 

Thanks to my parents for all of their amazing help!  I could not have gotten through these first two weeks without them!  I also want to thank my wonderful husband for all of his "check-in" calls.  I know flying back and forth isn't easy but Aiden and I love that he is able to visit over the weekends!  In addition to my family, I want to thank the rest of Aiden's supporters for the emails, comments and messages.  I have not been the best about getting back to everyone but please know we are so grateful for the outreach, prayers and positive thoughts!  Aiden also wants to send a special thank you to The Morrison's for the adorable airplane-themed gift and to his Grandma Terry and Grandpa Jeff for the Mickey Mouse stuffed animal and wall decals; they are a hit!!

A few of you have asked where to send cards to "Iron" Aiden, so please see our current Boston address below.  We will be staying here until Aiden completes his 28 day radiation treatment plan.

Aiden (or Leslie) Lipscomb
1 Emerson Place, Apt. 2-O
Boston, MA 02114

Facebook friends, please remember to vote daily for Journey 4 A Cure in the Vivint Gives Back contest!!  This amazing charity is trying to win a $250K grant to benefit childhood cancer research.  Please visit www.vote4acure.com today!!

Lastly, Aiden is sending love and get well wishes to his good friend, Jade, who is currently in the hospital with pneumonia.   Miss Jade, we are ALL thinking of you!!  Many happy thoughts are coming your way!  Please keep this little pediatric cancer warrior in your prayers too!

With love,
Leslie
(Aiden's Mommy)
Email: oursweetaiden@gmail.com
Facebook: Rally for Aiden

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