Happy Birthday to my boys!

2 years ago this day at 4:46am (Declan) and 4:47am (Cole) we were blessed with the addition of our 3rd and 4th boys. To say we were over the moon is an understatement. We were also a little bit shocked…because they were 6 weeks early, born at 33 weeks. At 2:15am I awoke to a “moist” feeling. Since I my belly was out to Tuesday and back, I (ok, I admit it) thought my little men had helped me to “relieve” myself in bed (I mean I was peeing like every 4 minutes at that point so it wasn’t outside the realm and btw… waking up wet, still just as shocking a feeling as when you’re a wee tyke!). My only thought at the time, aw man! After a quick trip to the bathroom and a sheets change, I figured I’d be back in bed. Wrrrrrong. The “moistness” kept “moisting” me. Uh oh…this is not what I thought at all (FYI…all my kids were C-section due to medical reasons so this kid was oblivious to water breaking, plus no labor pains…nada, nothing.)

We raced into my Mother-in-law’s room (thank God, they were living with us at the time!) and said we were off to the hospital. She tells the story that she went back into her room to grab a robe and come help us get ready…by the time she got downstairs, we were already gone. Nervous? Ah yeah, just a bit.

So we get to the hospital and after some scary moments (ok, more like 45 moments) they were finally able to locate Baby B’s (we didn’t know what we were having, we now know this was Cole) heart beat and all was ok again. Our Doctor arrived assessed the situation (and this is where the real shock for us came into play) and said ok, we’re all set. Ok, sure…what does that mean? So Stan and I joked about getting the camera. (sidebar…those of you who know me or have tried to leave on time for anything with me, know I’m not known for getting out the door quickly…as we were leaving the house, I saw the camera on the counter and stopped to talk about whether or not we should bring the camera…poor Stan I torture him so, he practically lept over the counter to grab it so he could get me out the door at a more rapid pace.) When our Doctor said, well where is it? Stan and I looked at each other a little puzzled. Stan replied it was in the car…and this is where our jaws hit the floor…his reply was well hurry up because these babies will be here before 5am. WHAT?!? TODAY?

Ok, ok…I know that when water breaks, pregnant women in this wonderful world of ours have babies. I know this, we knew this…HOWEVER, this was our kids and it was 33 weeks so we became dense. We both thought I’d be on bedrest. Silly people we were (still are really). Even thinking back on it I can still feel the sense of shock. To say we were scared was a bit of an understatement but off we went. Me to the delivery room and Stan to suit up for the OR.

I’m totally tearing up thinking of the moments I saw both of my boys for the first time…perfect. Declan with his full head of dark hair and Cole with his little blonde peach fuzz. Beautiful, our sweet babies.


Declan


Cole

We were very blessed, our boys were healthy with no real major preemie issues. We spent the next two weeks in the NICU helping our boys get stronger and learn to eat. Ironically, Cole was the one who gave us the most “trouble” learning to eat. (Sucking and swallowing isn’t developed until 35 +/- weeks in utero)

Here are a few pics of our NICU stay..

Holding my boys, together for the first time!


Cole snoozing


Will holding Declan for the first time


It’s hard to believe how tiny they really were; Declan 5lb 9oz, 19 inches long and Cole 5lbs 5ozs, 18 3/4 inches long…yeah, and they were 33 weeks and no I can’t imagine how immense my belly would have gotten if they went to term.


Daddy holding Declan
(These last two are some favorites of mine because they show just how small they were.)

Declan was our first to come home after 8 days…here he is with his big brother, Brady, holding him for the first time.

And then Cole…

Back together again. So sweet how they used to cuddle up to each other.

Here’s a few more…

Ok, now I’m getting my self all worked up…I loved to watch them sleep together, so sweet.

In many ways, Stan and I think those days in the NICU prepared us for the many sleepless, frightening days and nights with Declan during his diagnosis. We had been through equipment “boot camp” in the NICU so everything wasn’t so foreign and frightening. But that’s not what today is about. Ok, sure I’m sad…I want both my boys to be here celebrating their 2nd birthday together but that’s not to be. So we’re remembering the wonderful day that was their birth (thank you Stan for talking me off the sadness ledge today) and how joyfully we shared the news of our two new additions, our Declan and our Cole.

Happy Birthday to you Declan and Happy 2nd Birthday to you Cole! We love you both so very much!

If you never had to ….

The following was written by a dear friend whose son, Nicholas age 2, is battling a form of brain cancer known as Anaplastic Ependymoma.

I would ask for your special prayers for little Nickybear…he and his parents arrived in Memphis today for Nicky’s follow-up MRI scans on Thursday at St. Jude’s. Please pray with me that his scans are clear.

Please also pray for Luke Hawley, his follow-up scans are tomorrow in DC. He and his family have been enjoying a wonderful family summer…free of the horrors of cancer…please pray their joyous summer continues with an “all clear” on his MRI. Our dear friends, Brent & Missy, are on their way to MD Anderson for his follow-up brain tumor MRI’s tomorrow as well. Pray for their positive scans and pray for a day when cancer is a term of the past.

The following words were written my Nicholas’ Mom, Angelia, whom I have the pleasure of calling friend. I feel as if I wrote them myself. Ang has graciously allowed me to share her words with you.

If you never had to ….
If you never had to hear the words “your child has cancer” …
If you never had to live in hospital rooms for days that turned into weeks….
If you never had to see your child wake to a world of deficits from surgery, never the same ….
If you never had to watch your child have lines or ports hang from their tiny chests …
If you never had to watch massive amounts of poison being pumped into your child’s body ….
If you never had to hold your child while they vomit from the same thing that’s suppose to help them …
If you never had to watch your child in pain and feel so completely helpless …
If you never had to hook up a feeding bag that pumped food into your child’s body….
If you never had to hold your child while they sedate them for more tests…
If you never had to watch your child be fitted for a radiation mask…
If you never had to cry in fear of the reality that cancer has no rules…
If you never had to watch your child’s hair, eyelashes and eye brows fall out ..
If you never had to watch your child’s body become fragile and small…
If you never had to watch for side effects of treatment …
If you never had to sit in front of a doctor listing off the deficits your child will have from treatments…
If you never had to live in a watch and wait lifestyle praying cancer is gone….
If you never had to wait for results that could change EVERYTHING all over again…
If you never had to hear that your child relapsed and more medical options may be an option….
If you never had to watch your child fighting to breathe because the disease has spread ….
If you never had to hear the words, no more can be done …
If you never had to watch your child’s life being ravaged by cancer ….
If you never had to make arrangements anticipating your child’s death ….
If you never had to wonder if today will be your childs last..
If you never had to watch your child take their last breath while you grip them tightly…
If you never had to kiss your child’s casket and say goodbye …
If you never had to mourn the loss of a child DAILY …..
If you never had to write a journal entry about how painful life is without your child….

I thank God every day that most of my friends and family don’t know the intricacies of this perfectly written poem. That you’ve never had to do even one of the things listed here, much less all of them. I thank God every day you don’t have to do what we do…the parents of children with cancer, the parents with children surviving the days after cancer and all the late effects of their treatment or the parents/siblings/family living with the loss of a child taken from your arms because of cancer.

So I have an ask…because my life was no different than yours prior to March 9th, 2010; I’m asking you to vote (www.vote4acure.org) for Journey 4 A Cure through August 27th so we can get funds into the hands of those doing such meaningful research to help save our kids. We are so close but we need everyone to vote and ask those around them to vote. I feel we can do this…I mean I really feel it.

You all know this…I don’t like asking. It’s not a place I reside in comfortably, at all. But I’m asking, again.

I’m asking because my son’s life touched yours. For some reason he touched your heart and because of that I’m asking you to take a few minutes each day for the next 6 days and Vote 4 A Cure. Vote with that piece of your heart that drew you to Declan. Vote and ask your family and friends (and their friends) to vote with you. It’s 6 days…and seconds a day. Please, because you won’t be able to go back and get this time back or have to wonder if it would have made the difference (a question I ask myself daily) if you ever have the devastating misfortune to hear the words…”Your child has cancer.”

August 17th, 2010…your last full day on earth / Reflections of a nightmare

I finally have a minute to sit down and truly reflect on these days of last year, the early hours of the 18th and our life together sweet baby. I think life has positioned itself well since August 9th to help us (me) be distracted away from thoughts surrounding your final days here. I so desperately wanted to pour over each day in my mind…the last days I was able to hold and touch you. (Interestingly, the images I have of you are not on your sickest days…you’d think they’d be engrained in my head…they are there but it’s your beautiful face and sweet smile I see when I think of you. As it should be.)

I’m sitting in our quiet house (that’s only because it’s the middle of the night…it’s louder than a train station in here normally!) listening to the songs that played over and over again so many times for you in the hospital through the monitor in Cole’s room (the room you were supposed to share with him) the same ones we listened to non-stop in your final days. In so many ways I wish I was back there with you now but I know that is the selfish me talking because I miss the feel of you in my arms. If I had known how badly my arms would ache to hold you to me, I would have stayed so much longer. I would have been asked to give you up, been told that it was time. I guess now I know the time didn’t matter, it was never going to be enough. (It never is with our kids, is it?) In the excruciating pain of your death, we were actually given a gift we had not had in a long time…the ability to hold you, free of tubes. To cuddle you without fear of pulling a line. It felt so good, which increased the heartache even more but you were also at peace.

I remember leaving the PICU and getting to the car, thinking I’d forgotten my phone. I ran back up to check the room…but that was not it. I think it was the piece of me that thought, no…no…please, it can’t be real, he’s supposed to go with me…I’m supposed to protect him and help him through this…me and my little buddy. The final walk through the halls that had become a second home to us was so lonely…my arms were empty, you were gone.

As we left the hospital, heart broken and well, just broken. I will never forget the torrential downpour outside. It was terrible. I mean here we are grief stricken and we kind of looked at each other like, really? Really, you’re going to throw this on us too? So many times I’ve thought of that night and I think the rain was not rain at all but the tears of the children who went before Declan, crying for the loss of yet another young life; coupled with the collective tears shed by the Mommy’s, Daddy’s, brothers, sisters and family members left behind.

Those last days were torturous. You almost slipped away so many times and it was horrific to watch your breathing slow and heart rate drop wondering if this was it, the moment we would lose you. And then you would fight back…there was so much fight in you. I found myself wanting it to be over for you but knowing I wouldn’t be able to bear it…on my God, maybe I shouldn’t be sitting still thinking about you and how much I miss you. Watching you die was crushing. The most helpless feeling in the world, knowing you were leaving us…that the cancer had won and was taking you from us.

I think on some level Cole is sensing it too…he keeps crying out in his sleep and he rarely, if ever, does this for any sustained period of time. He was inconsolable enough that he’s now sleeping next to me, lying on the last blanket we held you in…the one I now sleep with every night. Maybe his little heart is remembering and crying out for his loss, the loss of his twin.

But then his cry is the reminder for me, the reminder of today. Yes, now is it the 18th…coming up on the time you took your last heartbreaking breath. I actually don’t mean reminder of the 18th but our mantra for this whole nightmare…we only have today. Stan and I were talking about last year the other night before I left for my trip. We were talking about the day we found out Declan would die, and Stan said he’d rather spend his time thinking of all the happy times…the day of his birth, the smiles, the joy he brought us. And he’s right. It’s easy to get caught up in missing him and he crushing pain in our hearts every day but in the end, what purpose does it serve? By keeping ourselves in the present with our boys and remembering the joys, not the trials of the past, is how we want to try to live.

The time just crossed over 2:20am, your official time of death. Damn. I am numb at the thought. Sweet Declan, please know we will try hard to keep your spirit alive….fight to save others from the place we find ourselves in. You are missed beyond measure. Thank you for all you’ve given me. I have been blessed by your presence in my life.

Another birthday, another hope, another wish …

On my birthday last year I spent the day at the hospital with Declan.   My wish and my prayers that day were clear, I begged God to grant a miracle and heal Declan.  I remember not wanting to leave the hospital that day.  I watched Stan & Sherri holding their baby, weary but afraid to sleep wanting to spend every last second holding Declan.  We lost Declan 2 days later, my faith was shaken to the core and the pain and the emotions remain raw. 

This year I have another hope, another wish.  I’ve looked at the list of angels that have been added to the heavens since this time last year.  The statistics say an additional 20,000 kids have been diagnosed with pediatric cancer and 8,760 have died.  In the grand scheme of statistics these numbers are small, but if you have a child with cancer or if you have lost a child with cancer statistics are not part of the picture.  The point here is that society hasn’t chosen to put dollars into research to find cures for the small number of children and families impacted.  We must change this picture.  We must find cures and we must do it now.  We were just like most other people, we assumed that there were treatments that sufficient funding was going to research.  When Declan was diagnosed the ugly world of pediatric cancer was revealed, so now we journey to save other kids to give them hope with treatments and cures.

So my birthday wish today, my hope is that we can somehow garner the support, get the votes to honor Declan, Charlotte, Nathan, Hailey, and the many other angels.  To get the votes to win research dollars to support the research of Dr. Michael Jensen.  He has a vision of creating a world without childhood cancer.  It is amazing to me that American Idol can get millions of votes in one night and we can’t get a couple hundred thousand in two months — what’s up with that???

Please help.  Please vote today and through August 27th.  Please spread the word and get others to vote.  We continue to hope, to journey, to have faith!  http://vote4acure.com

 

A long overdue, Thank You.

I’ve sat down to write thank you so many times and the paralyzing fear that ensues is horrible. I’m so afraid I’ll forget someone or some kindness that I’ve shied away from them (the Catholic guilt is killing me so you may get a thank you at some point in the future…2020 sound good?). The kindness that has been shown to my family is truly beyond words. The kindness shown to Declan…I will spend a lifetime of “pay it forwards” and won’t scratch the surface of a proper thank you. We have been Blessed.

There is one person in particular I feel the need to single out…my sister in law, Beth Collingwood. We (our family) spent time talking about the foundation we would start when Declan was better, to help families who found themselves in our unenviable shoes. As we all know, the “got better” part didn’t happen for Declan or our family. On some level the steel in our resolve was cemented in his death.

Before you have a child with cancer, St. Jude’s is the childhood cancer non-profit. Truth be told, there are thousands. When I reached out to the lead researcher for a study Declan was included in to ask her about fundraising efforts on their behalf and her thoughts on the best way to approach our foundation, I was taken aback by her response. It was an almost exasperated response along the lines of…there are too many foundations, can’t you just band together with another? In my mind I thought, did she forget Declan died? I mean how can I/we NOT start something and work tirelessly on it? Once again as our fog has lifted, I see what she means. There are a lot. Each has its own spin, I imagine based on their child’s experience or where they see lack in the childhood cancer world. They are ALL worthy. They are all born out of the love and heartbreak of family…even if your child has lived (and I can’t truly speak but I can image) there is a sense of the broken heart of it all, the childhood days lost to hospital stays and IV’s and surgeries and hair loss and uncontrolled vomiting and invasive procedures and clinical terms and separation from family and friends and well you get the drift. I think we all suffer from the heartbreak of what could have been. What could have been a life or what could have been a childhood…heartbreaking loss, all the same.

So we began work on our non-profit, Journey 4 A Cure. Journey 4 A Cure because while Declan’s Journey is the reason we began, our Journey now continues for all kids (our own included). Beth, Stan and I began the work and it quickly became Beth and I due to Stan’s work schedule. And here is where the thank you truly begins…

Beth and I worked on this together but I would be lying if I said I was responsible for its current state. For me, you can imagine the desperation for the ‘want’ of this but it has been hard to put it into action. There were days I would begin working on some piece and would get lost in the world of another child battling or my own thoughts or just muscling through the depression of burying a child. And to that end, Beth has shouldered J4AC. She has sweated out the finer details of obtaining official 501(c)(3) status and establishing the legal entity. She has laid a solid foundation for J4AC. It is on her tireless hours, her miraculously timely and poignant posts on Facebook (yes, that’s Beth…not me; ok a few are me but the lion’s share is Beth.) Her ability to find and establish relationships which will get funds in the hands of the researchers making strides towards a cure. Her ability to create projects which have immediate and lasting impact on the lives of children battling cancer today. She is the driving force and it is on her back that success has been born.

I don’t say any of these words because she needs them…in fact, she is going to kill me when she reads them…but because you need to know. I need you to know. As much as I can I correct where I see people directing a sentiment at me because they think I penned it, I want people to know how amazing and tireless Beth’s efforts are towards the success of J4AC…her nephew’s cause. She has already done so much good in the world of cancer through J4AC and has helped build the initial steps towards its success in fighting childhood cancer.

I wrote about my son’s experience with cancer and how it impacted his life, and our collective family life; but Beth has created something so far beyond words…she has impacted and continues to impact lives on a daily basis. A change has occurred because lives have been impacted for the better. Beth will tell you Journey 4 A Cure is a family thing and it is, it began with our family’s experience, but it has grown to impact others based on the tireless hard work of Beth.

I also figured something out the other day and my heart broke into a thousand pieces over it. Beth learned her nephew was going to die on her birthday last year. I completely forgot it was her birthday. I can’t imagine the pain that it caused her to learn this fact on such a special day in her life, a day to be celebrated.

Beth, I hope each birthday moving forward the pain you felt is replaced with the knowledge that all the work you did and are doing will help bring so many more children to their birthdays…those that might not have occurred without you. Thank you, Beth. I KNOW Declan is so proud of you. Oh yes, and Happy early Birthday (tomorrow).

Wouldn’t it be great to see a surge of votes on Beth’s birthday? A birthday shared with little Luke Hawley…what about for him and all he’s had to endure? Wouldn’t it be great to know your simple act of voting and asking a few extra people to vote alongside you could give a birthday to someone who might not have had that chance without you?

New beginnings

I just watched a beautiful sunrise where the clouds became illuminated with varying shades of orange and red. I am always awed by the natural beauty of the rising and setting sun. I find myself stopping whatever I am doing to enjoy them. They each give me a sense of all that is good and remind me no matter what is happening in my life, there is a new day or another one coming soon to begin again.

That’s the sense I (we) had last year about this time. We had returned from Declan’s radiation trip to Houston and barring a few chemo trips to the hospital, things were looking so wonderful. In fact, we would argue the best week in Declan’s treatment to that point occurred the week before he returned to the hospital for what would be the last time. We had such a sense that things were looking up. You see the idea of radiating your child’s brain (or any part for that matter) is insanely frightening and while we wouldn’t know the potential late term effects for years to come, we were pleased with how Declan seemed to respond during treatment. We were home, Declan was home…not our home away from home INOVA but our home, and all seemed great. We still had a long road of treatment ahead but everything seemed to be headed in the right direction.

I just looked up and out the window are about a dozen dragonflies circling around…Declan and his friends have come to say hi. Hi Baby!

We were working into a home routine and it felt good…it felt right. It was the mundane of life occurring that we dreamed of and cherished while in the hospital. Declan was sitting in his highchair alongside his brother enjoying a “meal”, he was laughing and playing, he was enjoying wagon rides…outside!*…it was normal (minus the g-tube and round the clock meds but that had also become ‘normal’ at that point too). It was normal and it felt so amazing…hopeful, like a new sun rising.

The days that followed were some of the worst we had had to date, little did we know how bad it would ultimately get. Watching helpless as your child is obviously uncomfortable and not being able to console him is torturous; watching the s l o w, ticking clock in the surgery waiting room waiting to learn the fate of the latest brain surgery…ugh, brain surgery on your baby (you think tubes are bad?…I did, it pales in comparison); the hours of gentle rocking to help comfort our sweet boy after surgery, struggling ourselves to remain awake from the sleepless overnight wait while Declan was in surgery; the terrible recognition that something was wrong again and the ensuing stat CT scan in the middle of the night and additional overnight emergency brain surgery to alleviate the believed cause…more s l o w, ticking clock; all the while not understanding the real source was silently growing just outside the view of the head CT/MRI’s, still believing Declan would overcome…as he had so many times before. Not realizing we were unknowingly watching the sun set on his glorious life.

I look back now and cannot believe how much occurred in the final days leading up to the fateful MRI. I imagine there were many times looking from the outside in it seemed the steps we were taking were beyond imaginable and horrific…and believe me, they are…but as you walk this path, it strangely just become the steps you take to help save your child. What else do you do when those are the only options available to you? I would do anything to take every millisecond of discomfort from every child battling cancer (or any affliction for that matter, medical or born of man). The innocence stolen is immeasurable.

Even through the body-rattling roller coaster (you know the kind) we were on with Declan in the final week, the sun was still rising…the sunrise of his life. We were confident the brightness of his life would burn through the latest cloud crossing his path; not realizing the storm clouds were lurking over the horizon, gaining strength.

*I will add pictures of these events when I can…can’t get it to work right now. Operator error, for sure.

Somewhere over the rainbow

…I just walked into Cole’s room to replace a runaway ‘binkie’ and comfort his sleepy mission to locate it. As I walked into his room I hear the music that has played for all our boys as they have fallen asleep, and while they have slept; the music has been a friend to me on so many sleepless nights helping to comfort the unhappy Carmical baby boy and his sleepy Mommy. The music has spoken to me on so many levels and I truly enjoy the songs. I see and feel each of my boys when I hear the words; remembering the smells, the snuggles, my awesomely comfy glider at home, the not very comfy gliders at the various hospital, the rhythmic sounds of their soft breath as they fall into deep sleep…so many wonderful memories. Once again though, I am reminded of how much has changed.

The music was mid-song in Somewhere Over the Rainbow, ‘….And the dreams that you dare to dream, really do come true.’ Ha, not really I thought. Not for my Declan. But just as swiftly as that recurrent painful thought came into my mind, another truth rang through…my dreams for Declan are not the ones most parents have for their children, well at least not any more. My dreams for Declan are about making a change. So cliche, I know but true. I know they are true because the thoughts come to me in the moments when I should be screaming or having a massive pity party or a whale of a good cry. Because of the intesity of the thought swings, they stick with me and steel my resolve.

I know there so many unrealized dreams for our kids over the rainbow but I also know I share my dream with so many others and I feel this dream will come true. I mean dare to dream it…a world with no more childhood cancer.

‘….and the dreams that you dare to dream, really do come true.’

August, you mock me.

Like the changing tides, I cannot avoid you. I wanted to but here you are nevertheless. Clearly I can’t avoid any month in a year or day on the calendar. It is the curse of time because while it marches forward, it also retraces it steps. Covering the same ground over and over again. Sure the landscape will look different from year to year but the days and months cannot be avoided.

There is so much tied to August of last year. So much I will cherish forever…like your first wagon ride outside our home with no hospital walls or ceilings to block the sunshine from shining on your face. The day you so beautifully smiled up to the Heavens. (Gosh I still wonder what you knew) And then there are the dark days, so much I would give anything to never think of again…the final days, hours, minutes and seconds with you. Even those I’m not really willing to give up because you were still here.

I can feel the emotions building in me…I’m not really sure what to do with all of them. There is so much to still process. So much I know will never make sense. So many broken pieces to still pick-up. There are days when I feel stronger, where my heart feels more connected to you than broken over losing you…and then I look up and see tears flowing down your oldest brothers cheeks and the pain on his face as he silently tries to eat his lunch; crying because he misses you so much and it all comes flooding in. The pain, the heartbreak, the confusion, the helplessness, the whole of it…missing you (and our cuddles).

So August, go easy on us. We’re still in uncharted waters here…feeling very much like a rowboat floating in the vast ocean without a paddle to guide the way, hoping this part of the journey is not as bad as I think it will be.