Late yesterday, I spoke with Aiden’s oncologist and he had good news to share.All of Aiden’s post-treatment evaluative scans have shown radiation pneumonitis as well as an area of thickening near the original tumor site. This last round of imaging illustrated that these treatment complications are starting to improve and that no cancer is present.
Radiation pneumonitis is inflammation of the lungs due to radiation therapy.Aiden’s pneumonitis was pretty significant last fall (affecting his right lung) following treatment but has been slowly improving.The area of thickening near the original base of the tumor site is mostly likely dead cells and/or scar tissue.This area, like the pneumonitis, is getting smaller.
The last thing that Aiden’s oncologist mentioned is that the lung volume on his right side is lower than the left.Following radiation therapy, we knew that reduced lung volume as well as slow growth of Aiden’s pleural area on his right side was a possibility.This is something we will deal with and have confidence that Aiden will continue to come out on top.My little man never ceases to amaze me.Aiden has an appointment with his oncologist on Friday so I am sure we will discuss this further at that time.
We thank God for His blessings and thank all of you all for the prayers and well wishes!!We are so happy with Aiden’s evaluative results and will continue to keep you all updated on his progress.
With hope and love,
Leslie
PS - If you haven't already, be sure to read yesterday's post and view the adorable video!
The Rally for Aiden Website is getting a face-lift!I will be posting blog entries here until the new site is ready to go!
Saturday night I couldn’t sleep.As the minutes turned to hours, I caught up on friends' lives via Facebook, watched an episode of Desperate Housewives on Netflix and tried to liken Chris’ snoring to a kind of calming white noise.With sleep continuing to escape me, I grabbed my favorite crumpled pillow (it bunches in all the right places) and wrapped myself in a warm blanket I was lucky to find in the hall closet.Tip-toeing into the darkness, I made it to Aiden’s room.I somehow managed to hurdle the baby gate unscathed (not an easy feat since I am prone to injury).
As my eyes adjusted to the even deeper darkness, I watched Aiden’s sweet silhouette methodically shift up and down with each breath he took.I had found my peaceful place.I gently placed my pillow on the floor alongside Aiden’s toddler bed.Still wrapped in my blanket’s warmth, I finally rested.Minutes again turned to hours, but I slept.It wasn’t until morning neared, that Aiden noticed mommy.In an instant he was curled up in my arms, head resting comfortably on his froggy pillow.As daddy walked down the hall, he noticed our slumber party.He too jumped the baby gate and quickly snuggled to next Aiden.There the three of us rested, peacefully soaking up the stillness of early morning.
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Over the past several months, I have dreamed about writing.At times, the yearnings got so strong I couldn’t focus on anything but typing away on my computer.Every time my fingers touched my laptop keyboard, I stopped.It was as if a mountain of emotion, surrounded by deep endless ocean of anxiety, was blocking my way.
When Aiden finished treatment, I entered a new territory: life following cancer.From the day of his diagnosis through the end of this past summer, my life was centered on Aiden’s treatment, his recovery following each round, and patiently waiting for results.I never really had the opportunity to take it all in.Of course, I was keenly aware of the hell we were going through, but once we were in the trenches, it all started to seem so normal.
Now it is as if I am standing atop the tallest mountain looking down upon a sea of memories swirling in constant motion far beneath my feet.Each current is reminiscent of a moment, image, or feeling that has made up my life for the past two years.Off to the right, I see the room where Aiden’s surgeon grabbed my hands and told me that I will be able to “do this.”It was if her eyes were magnetic; I could feel the strength in her stare as I felt myself starting to lose focus.I was unable to process the recent news, yet, somehow, I could feel her confidence and the touch of authority in her voice.I realized that I had to pull it together.Aiden needed me.
A deep swell hitting the shoreline at the base of my mountain holds not a memory but a feeling.Every tiny morsel of good news we received over the past two years fed the emptiness in my heart.That sensation of fullness though was always tempered.Privately, I was fiercely afraid of letting myself get lost in any emotion that could disappear.I learned so quickly that happiness could be fleeting; that in an instant my world could completely turn upside down.Many times I am able to keep my fear and cynicism at bay, but, far beneath the surface, those feelings still exist.
Pooling at my feet and gently tickling my toes are the images of Aiden now.I look into this pool of water, an accumulation of tiny droplets from the sky, and I do not see a reflection of myself but I see the smiling face of my beautiful child.Fortunately, these images are real.I can bend down, touch them, and watch the water transform into new likenesses of Aiden.Each drop of water seems to fully capture the twinkle in his eyes and blush in his cheeks.
Far off in the distance, I see a whirlpool whipping and spraying water as it spins violently round and round.In this memory, I see my brother and his girlfriend walking towards me as they enter the hallway leading towards the double doors of the Pediatric Intensive Care Unit. I remember him hugging me while I watched tears quietly roll down his girlfriend’s face.The group of family sitting with us in the PICU waiting room started to grow.Despite the late night, close relatives and a few friends started to arrive.I took people back in shifts so they could talk to Aiden, hold his hand or say a prayer.He was hooked up to a ventilator, tubes running in all directions, and seemingly unaware of the night’s events.Letting myself get swept up in this memory, makes it hard to move forward.I feel old wounds begin to open, stinging from the saltwater.
Like the ebb and flow of the ocean, my memories of the Aiden’s diagnosis, treatment, and recovery continue to rise and fall.They are not all bad but, at times, they are consuming.Now that I am able to look back, I can see each step of our journey and I can remember how I felt at every moment.When possible, I try to focus on the good which is present – if you look hard enough – in every situation: I am a stronger person now and I am grateful for learning so many of life’s lessons while I still have time to implement change.Aiden as well as my husband and I are continuing to heal.We are forever altered, but we have made the very conscious decision to keep moving forward.Now that I am a mom, I realize that I can do so many things I thought were impossible: I can swim out of whirlpools, see the beauty in the rain and move mountains.
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UPDATE ON IRON AIDEN
It has been a little over six months since Aiden finished treatment for embryonal rhabdomyosarcoma.I can’t even believe how the time has flown by; maybe the rambunctious toddler running circles at my feet is keeping me busy?I am simply overjoyed to be chasing my little man around the kitchen rather than dodging IV pumps in a hospital room.Medically, Aiden seems to be doing well.His blood counts have recovered from the many months of immunosuppressive chemotherapy and the inflammation in his right pleural cavity, due to 29 days of proton beam radiation, is no longer causing symptoms.It is hard to tell how long it will take Aiden’s lung, diaphragm and surrounding tissue to completely recover.Inflammation is tricky and can sometimes persist for quite a while.
Aiden is currently getting scans every three months and will continue to do so for the first year following the end of treatment.Tomorrow, Aiden is due for another round of imaging.He will first get a CT scan of his chest and then he will get a chest MRI with and without contrast.This is always an extremely anxiety-filled time for my husband and me.Aiden and I arrive early at Fairfax Hospital, we meet with his anesthesiologist (he has to be sedated for both studies), I carry him into the CT room, and then I kiss his tiny cheek once the meds begin to make him sleepy.Upon leaving my brave boy on the CT table, the stop watch in my head begins ticking.We are usually at the hospital all morning as the MRI takes awhile and Aiden has to go into recovery upon waking from the anesthesia.Waiting for results is exceedingly difficult, but expected.Aiden’s doctors are very responsive so I hope to hear back at some point tomorrow afternoon.All prayers, good vibes and happy thoughts are very welcome!We will definitely keep you all posted.
Before I go, I want to share a quick story.To celebrate my 30th birthday, Chris invited friends and family to a local winery, Paradise Springs, nestled just outside the quaint town of Clifton, VA.We brought Aiden with us to enjoy the afternoon.As soon as we reached our tables, I heard live music and I knew where Aiden would be spending his time.My little man has music in his soul.I have no idea where he gets it as Chris and I do not even possess rhythm.Now, don’t get me wrong, we can sway with the best of ‘em but singing, dancing, playing any musical instrument is not our forte. Aiden, on the other hand, can rock out!
The guitarist and singer is the extremely talented, Eric Vitoff.He mentioned on his facebook page, “apologies for any voice cracking that may or may not have occurred during the filming of this video” because he was a little taken aback by Aiden’s ability to “get down.”Eric, though, completed wow-ed the crowd with his musical abilities.After watching Aiden with his guitar for most of the afternoon, I decided to share our story with Eric.He was shocked (which actually makes me smile since it proves just how far Aiden has come) and very compassionate.I want to thank Eric for sharing Aiden’s story on his Facebook page and for also sharing the spotlight with my little man Saturday afternoon.A big thanks is also owed to our friends (who are also amazing photographers) Matt Voshell and Diana Casey since I (once again) left the memory card at home but brought my camera.Thank you all for capturing the many magical moments that occurred on Saturday.
Well that is all for now, but I promise to stay in better touch.I will post an update tomorrow.Thank you all for continuing to follow us on this journey; the support and love has been nothing short of incredible.
