365

I love my brother!!!

Well Christian what can I say about this past year? I am at a loss for words, as I seem to find myself more and more these days. Today is your one year anniversary of your cancer diagnosis (actually one year plus a day as I couldn’t find the time to blog yesterday!) It has been a long 365 days and we have learned so many things about ourselves in these days. I still remember the night we went to emergency department because of the ‘lump in your tummy’. I remember getting the diagnosis from a random physician in a small dark ultrasound room. I remember our first scary night in the unit talking with the nurses about possibilities and hopes. I remember waiting those first two grueling weeks for a final diagnosis and staging of your cancer. I remember what a trouper you were and how you just went with the flow – like it was where you were supposed to be. The most natural thing in the world. You were feeling so sick and horrible but you still were on a constant mission for fun and laughter and smiles. You were the strength for you dad and I. Your resiliency and fortitude is what kept your dad and I focused. How could we stop and complain when you never did? So here we are one year later – your one year anniversary.

I hate getting NG tubes put in!!!

Almost two months to the day when your treatment was SUPPOSED to be completed but apparently there were other plans in the mix for you. I am typing this as you quietly sleep beside me. We are here for day 2 of your five day chemo – your last chemo stretch before your high dose therapy begins. There is a feeling of sadness in the air and on my heart. You threw up your NG tube again today and I know how horrible it is for you to have to have it put back in. I know it is considered an easy procedure (by hospital standards) – but how horrible must it feel to have a piece of plastic shoved down your nose, past your throat in into your stomach. I see you retching, coughing and gagging at the most unnatural process; and I want to jump into your body and do it for you. Take away all of your pain and discomfort. I listen to you scream and cry, pleading for the nurses to stop, “I don’t want to do this”.

First week in hospital January 2011

Just yesterday you had your 9^th NG tube (I have lost count) put in, a blood transfusion, massive doses of antibiotics, chemotherapy and very little sleep! Yet when we got home you absolutely amazed your dad and I with your wit, your smile, your energy levels and your heart. This morning your chased Ryan around the kitchen island having sword fights, chased Evan around on hands and knees acting like a dog and chased Julie down the hallway at the hospital. My heart leaps to see you enjoying life the way a young boy should. Moving the way you want to without pain and restriction. How did you get so funny? Chris and I laugh at your ability to quote lines from Home Alone and each time you do, you remind us of what a normal life is like and allow us a small glimpse of how things will be when we are done here.

Always a character...

Chasing Julie down the hallway.....i was running.... (ok forest)

In three weeks time we will come back to the unit for your high dose therapy – seven straight days of ridiculous amounts of chemo followed by weeks of recovery. But then a hope that these ridiculous journeys will all be over – the classic light at the end of the tunnel.

Asleep with monkey 'earn' from latest CT scan...so cute

Down the hallway I hear the raw and shear pain of a mother who has lost her child. In the 365 days of being here I have yet to meet another family who has lost a child to cancer, and her screams of agony are more than my heart can bear. I force myself to hold back to tears and keep typing because I don’t know how else to deal with the thought, "What if it were Christian?" Will this mommy down the hallway be able to feel some peace somehow? What a horrible horrible place to be. How do we end up here? God help us to find purpose to this rocky and uphill battle. God help us to find peace amongst the uncertainty, the pain, the loss and the struggles.

Mommy loves you "    " this much

Christian once again I want you to know how proud of you I am. You fight and fight and fight. How many times can I say this? Will you know and understand how much you inspire me? How much I love you? Will you understand how much you have taught me about love, commitment and the possibilities of the human spirit? Lets celebrate this date each year – a celebration of your battle, your victories. A celebration of the year the Crowell’s became a family than can never be defeated. A year we learned to trust God with our lives and our souls. A year that kicked off the rest of our lives with purpose and hope.

 

Today I am thankful for:

1.     HOPE

2.     PEACE

3.     JOY

4.     LOVE

An unfortunate side note – today we learned that yet another one of our dear oncology families will soon be saying goodbye to their sweet dear little boy – Ryan – they are hoping to raise some funds to pay for his pain medications and the ridiculous amount of debt an oncology family racks up. They are also going to be having one last amazing birthday party for him and are hoping to get some donations to make it a party that will never be forgotten. If you want to help out this amazing family, our family will be making a donation to them within the next few days. Message me if you would like to contribute. 

Hockey with Ryan 

Love love love music days with Marc