Happy 9th Birthday Phoenix

The two most important days in your life are the day you were born, and the day you find out why. – Mark Twain

The pain remains. It changes and morphs into anger and sadness but sometimes also joy. Joy to know that I had you once. Joy to know that I was your favourite. Joy to know I am your mimi and nothing can change that. Joy to have known you. Thank you for making me your mom 9 years ago. I miss you.

Happy 9th Birthday my Phoenix 💜 #happybirthdaymydarling #missingphoenix #loveforphoenix 

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Sleeping Bliss

This is how we slept. Intertwined in each other’s arms. There was a short period of time when she slept on her own in the crib but that was shortlived. She never fell asleep on her own her whole life and I am thankful for that now. Her papa and I always put her to sleep because she was our baby and she loved it.

One time I was putting her down for a nap at home. She must’ve been 3 or 4. My usual routine was to wait until she fell asleep then sneak out of the room. If I made one sound she would wake up and call for me. This time, I lifted my head to see if she was asleep and she opened her eyes, put her hand on my head and ever so gently guided it back onto the pillow. She was like: sleep mimi, you got nowhere to go. She was the boss. Lol. That’s one thing that I’m not used to doing: sleeping without her. I dont think I’ll ever get used to it.

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Fundraiser “For the Love of Nenix” to Benefit the Leukemia & Lymphoma Society of Canada

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When I do things for Nenix I feel energized. #purpleheartssocialclub’s fundraiser is 2 weeks from today! Save the date, bring your babies, come eat sushi and listen to #teamdanger perform For the Love of Nenix. Donations will be accepted at the door or click on the “Find Tickets” link on the FB event page (link in my profile). 100% of proceeds will go to the Light the Night Walk to benefit the Leukemia and Lymphoma Society of Canada.

The picture used in this poster was from the summer before she was diagnosed. She was 2 1/2 and we were on the way to the beach. Her eyes are so bright you can see her excitement. That was the summer of beach days. Happy Thursday everybody! emojiemojiemoji

#ImissyousomuchNenix #OGbabydanger #babydanger #teamdanger#OGteamdanger #mimimissesyou #missingnenix #lovefornenix#loveforphoenix #PhoenixRyland #inspiration #hero #gonetoosoon#kidsgetcancertoo #effcancer #fucancer #fuckcancer

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Nenix’s classic kawawa face

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Here is one of Nenix’s classic faces: her kawawa face. Kawawa means sad or pouty in tagalog. She’s 8 weeks old here. Wasn’t she the cutest? This was the first shot of her making this face. She also wore those leg warmers her whole life and I wore them on my fore arms at her funeral and carry them with me often.

‪#‎ImissyousomuchNenix‬ ‪#‎OGbabydanger‬ ‪#‎babydanger‬ ‪#‎teamdanger‬
‪#‎OGteamdanger‬ ‪#‎mimimissesyou‬ ‪#‎missingnenix‬ ‪#‎lovefornenix‬‪#‎loveforphoenix‬ ‪#‎PhoenixRyland‬ ‪#‎inspiration‬ ‪#‎hero‬ ‪#‎gonetoosoon‬‪#‎kidsgetcancertoo‬ ‪#‎effcancer‬ ‪#‎fucancer‬ ‪#‎fuckcancer‬

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It’s been almost 2 years without you Phoenix

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With Nenix’s 2nd Angelversary fast approaching, I am unraveling. The fatigue in my bones from missing her underlies every interaction I have with people. It’s as if the shock of losing her has worn off and I’m left gripping the reality that I’m told I must let go. My heart is exhausted from gripping it so tightly but how do I let this go? How do I reconcile this in my life? On the one hand, I am 2 years closer to being with her again but on the other hand it’s been 2 years since I’ve mothered my daughter. 2 years!!

Over the next 2 weeks I’m going to post pictures and share little memories about this sassy little girl named Phoenix. I won’t be offended in the slightest if you decide to unfollow me because it’s hard to watch someone in pain. But if you decide to stick around and hear more about this girl, I welcome your questions and grateful for your support because I will never tire of talking about her. It means a lot to me to know that you are here in the silence with me.

This picture was taken the day of her first haircut. We cut her bangs from the time she turned 1 but never the length. Her hair was down the length of her back by this point and we only had to cut it because she lost so much of it during treatment. I’m pretty sure I was more upset than she was about it. Look at her face! She even made us howl that night with a silly laugh she did.

What a true blessing you have been in my life Phoenix. I will try to accept it was meant to be that we were to hold eachother in this lifetime but for a short while. I will always, always keep you in my heart. Where ever I am, you are.

#ImissyousomuchNenix #OGbabydanger #babydanger #teamdanger
#OGteamdanger #mimimissesyou #missingnenix #lovefornenix #loveforphoenix #PhoenixRyland #inspiration #hero #gonetoosoon #kidsgetcancertoo #effcancer #fucancer #fuckcancer

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March 6th – Remission

March 6th. My parents’ anniversary.

That was the significance of this date until March 6th, 2012. It was this day, 2 years ago, that Phoenix was declared in Remission.

Remission = Cancer free. What a wonderful and hope-filled word.

It was a weekday and it was my turn to spend time at home. I work from home so that’s what I was doing when I found out. We had been staying in the hospital straight since the second week of January. Well, we spent 2 weeks at home during the holidays and then we were back in the hospital. We found out Phoenix’s leukemia relapsed while she was on her last module of treatment just after Halloween of 2011. Since receiving this terrible news, we were on a race to get her into remission so that she could receive a Bone Marrow Transplant; the last resort for a cure.

Each month since the relapse, she underwent strong and painful chemo to get her back into remission. The plan was to give her aggressive chemo and get her straight into Bone Marrow Transplant. The Drs told us that because the relapse happened while she was in treatment, her chances of remission were very slim. So each month we waited to see if the chemo worked.

November didn’t work.

December didn’t work.

January didn’t work.

Our hearts and Phoenix’s little body were on a roller coaster taking us between absolute panic and intoxicating joy on a daily basis. Hers was a complicated cancer. It was very aggressive, very powerful; just like Phoenix’s spirit. It was a part of her that would not be ignored and it was winning.

After the January round of treatment, we found out that the cancer was 70% in her blood. What that means is 70% of the cells in her blood were cancerous. Wow. This was the highest since she relapsed. The chemo had made it worse. What were we supposed to do? So we met with the Drs and the grandparents and it was discussed that there was one more tool in the tool box. One more chance to get her there and if that didn’t work……well, we would have to cross that bridge if we got to it. So February’s round of chemo started. Then Papa_Danger made this sign to hang on Phoenix’s hospital door:

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It reads:

ATTENTION!!

To All Who Enter Here

If you are coming here to feel sorry for my condition, go elsewhere. I am incredibly tough and will make a full recovery. What is full? That is the absolute utmost physically my body has the ability to recover. Then I will push that about 20% further through sheer mental tenacity and with the continued support of my family, friends and hospital staff. I am a warrior just like every child who is undergoing treatment in this hospital. This room you are about to enter is a room of fun, optimism, positive energy, love and intense rapid regrowth. If you are not prepared for that, GO ELSEWHERE!!

From: Phoenix aka Baby Danger

And then it was March 6 and we had REMISSION. And I was at home. It was a sunny day unlike today where it’s been rainy and cold. I posted the update to facebook and a ton of celebratory messages started flooding in from all over. I had to finish my workday and then I raced back to the hospital to hug my beautiful little warrior. She did it. The chemo worked.

And for 2 weeks we were elated. We were finally moving onto the next step towards a cure. For 2 weeks we were hopeful. We could see the light. We could see the end of hospital stays and painful chemo. After 2 weeks she started having fevers again and the roller coaster started back up. I’ll save that story for another day.

But for March 6th we had Remission. What a wonderful and hope-filled word. We could breath again.

And now some #ThrowbackThursday pictures of Phoenix to put some smiles on faces, mostly mine. I will never get used to this life without you, Phoenix. The colours are duller, the sounds are mumbled, the experiences pale in comparison to when you were here. What do I do with all this love I have for you Phoenix? It overflows into the silent emptiness that surrounds me. I’m lost.

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a post from papa_danger’s Instagram

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Could I have another moment
Another kiss, another smile
One more chance to watch you sleep
Or just to sit awhile

Ours to keep, or so we thought
We found we were mistaken
Like most of those who’ve lost a child
We felt we were forsaken

When I watched your life play through my mind
I can’t believe I failed to see
The silhouette of angel wings
There to set you free

I no longer feel so angry
You were heaven’s all along you see
Our time will come to be with you
To share eternity

– Tony Doiron
Written 5 years ago after his 2 year old daughter passed away.

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