Sunday, January 29, 2012

Here we go.....

Well here we go. It is with great trepidation, fear, and excitement that we will walk into the hospital tomorrow evening for what will be our last marathon session of chemotherapy. I am having trouble putting into words how my heart is feeling. I am so scared for Christian. I know he is going to be very uncomfortable for the first week. He will have day after day of insane levels of chemotherapy, never giving his body a chance to heal and knocking the crap out of any cancer cells that may be left in his body. This will be followed by another week or two of body aches and pains, mouth sores and sores in places that we just don’t want to imagine. I am glad he doesn’t know what it is going to be like – and I am thinking that when it is over he won’t dwell on how horrible he felt for those days or weeks.  All he knows is that this is the route to getting his ‘tubes’ out, to getting to Nova Scotia, to getting to golf with daddy. This is what he has to do so this can be over and he won’t be sick anymore.
Trying to point those toes!
I am fearful that I won’t have the energy to support him and watch him suffer. A lot of people comment on how strong our family is and how Chris and I are doing such an amazing job. But what people don’t know is the own doubt in my heart. Am I really doing all I can for Christian, Evelyn and Ryan? I feel most days that it is not good enough and I could be better. I think most moms think this way from time to time but when people tell me how strong we are, all I can think of is how weak I feel. I write this blog so that Christian can have an account of his journey. So Chris and I can remember the journey our family walked with God. But I also want to remember how I felt. And right now I just feel weak. I have never been so anxious to walk into the unit. I have never been so nervous to see that nurse walk in with her blue chemo gown, gloves and goggles. Hang the chemo bag and watch it slowly drip into his lines. Then waiting. Waiting for him to get sick. Waiting for time to pass by. Waiting for the hair to fall out again. Waiting.
I am so glad they love each other!

I sit here typing this beside Christian as he sleeps his last night sleep in our bed for what will be many, many weeks. His little head is sweating as it always does when he first falls asleep. I am trying to read a book and he wants to cuddle. He squirms his way in, just like he has done from the day he was born.  Then he asks me, “Is this alright? Can you still read your book?” I think if a heart could explode from love then mine would be in pieces I watch him breath, his little chest rises and falls and he lets out these random little snorts that lets me know he is fast asleep. I wonder what he is dreaming about?
In exactly one week’s time from tonight – seven days, Christian will receive his final dose of chemotherapy. God willing we will never have to enter the unit again for treatment. I can’t even wrap my brain around the obstacles that Christians has endured. For the love of the Father he is still here to fight again this week. For the love of the Father he has body parts that work and are cancer free. For the love of the Father he is cancer free. Do I even dare say these words out loud? Most people when they have their last dose of chemotherapy, they have a little end of treatment party. Ballons, hats, cupcakes, and the whole nine yards. It is so monumental what our little hero has accomplished. How many hurdles he has cleared. Yet after the last dose goes in he will begin a whole new battle. The battle to get better. If you were to look back on it – or had the ability to see forward then I am afraid we would not have endured. But one day at a time, sometimes one hour at a time and, during his surgeries, one minute a time and here we are.  Almost done.
Family gymnastics - don't ask me what Evan is doing!!!!
It is an amazing lesson for our family to replay for the rest of our lives. Don’t be afraid to jump. Don’t be afraid to ask God for help, strength, guidance, healing and love. I am scared for this week but I KNOW that God has a plan to heal Christian. There are so many times when God performed miracles for Christian over this past year that I know He will be laying in bed beside him when he has pain. He will be pouring water over his head when has to bath every six hours to take the chemo off his skin. He will be holding him up tightly against his strong chest when he feels like he cannot fight one more minute. And God loves me this much as well. He will hold up Chris and I when we are week. He will not allow darkness to come into our hospital room – but he will light it with positive words from friends and family. He will light the way with caring nurses and compassionate staff. He will light the room with His love.
(Psalms 18:28) "You, O LORD, keep my lamp burning; my God turns my darkness into light. "
     (Psalms 27:1) "The LORD is my light and my salvation-- whom shall I fear? The LORD is the stronghold of my life-- of whom shall I be afraid?"
Please continue to pray for little Christian this week. He will need strength, perseverance, rest and a feeling a hope. Please pray he doesn’t lose too much weight (the NG tube must come out because of a potential complication with the chemotherapy drug) and that he maintains an appetite. The he can keep his food down and every ounce he eats nourishes his body one hundred fold.
Please pray the Chris and I will have the patience and love to support Christian the way he needs to most. Please pray my other children feel love.
Gymnastics fun
I have finally started to allow myself to dream of our Hawaiian vacation. I am praying he gets strong quickly so we can realize the dreams we have been holding onto. I almost want to cry when I think about my kids just being kids. On Thursday Christian went to a special gymnastics class for immune compromised children and they had a blast. He told my mom that there were 3 other kids there, but he was the only one who was sick. (I think because he was the only one without hair!) I don’t want him to feel like he is sick. Like he is compromised. Like he can’t do the things he wants to do. I can only imagine how empowered he is going to feel when Daddy and Christian drive off on their golf cart to the first tee and he pounds it straight down the pipe. He will know,  “I’m Back!” 

Today I am thankful for:
1. Diane Jaffray going home to be with Steven
2. Mom's
3. Dad's

Ryan loves it too!

Wednesday, January 25, 2012

Welcome home Ryan C

I am so sad that for the second blog in a row we are talking about oncology families losing their little angels. A few months into Christian’s treatment we met Ryan Carrington, his mother Amanda and his older brother, Matthew. He was diagnosed with a terminal brain tumor a few years ago and has been battling every since. Last night Ryan died peacefully with his family by his side. He has been in so much pain and has endured things that seem insurmountable. I am so sorrowful at his passing but feel so much hope for him that he is now resting with God. He knows what it means to be pain free, to feel the peace and love of God.

Does it get any better than this smile ?
Even with a mask  you can see his eye's smiling!
The Carrington’s loss reinforces how important it is that each day we love to the absolute maximum. We all have jobs, responsibilities, bills, kids, hockey, etc – so to live life to the fullest by running off to climb a mountain or to swim the seas is not reasonable. To truly live each day to the fullest all we have to do is to love and love deep. To open ourselves to the love of others and to love ourselves. To not waste time on regret, anger and resentment but to forgive (for your own hearts sake), so that life can be lived to the fullest just by sitting in your living room with your family.  What would Amanda give to hug Ryan and one more time, look into his sweet eyes? You have the chance to love tonight.

Knocking it out of the park on his eye exam!
Christian had his last dose of small chemo today. As well as eye appointment, bone scan, bone age x-ray, echocardiogram, and one very unwanted IV poke. But when all was said and done he was proclaimed healthy and ready for high dose therapy! The transplant team has decided to up his treatment dates to this upcoming Monday. Yikes. I immediately felt sick to my stomach at the thought of starting so quickly. I wasn’t sure I was ready for what was to come. Only for a brief moment - then the opportunity to complete his treatment a week earlier sounded great! I need to prepare myself for what is to come for Christian. Am I ready for him to be in pain again, throwing up, sick to his stomach and not wanting to eat? Chris and I have been over the moon these past few days as Christian seems to be improving and growing by leaps and bounds. All of a sudden he likes food again, he pronounced today, “you know I like apple juice again”. So proud! It my seem small and insignificant, but one cup of apple juice is 100 calories…. That is worth a million dollars in our eyes. Each time he polishes off a container of yogurt or a slice of pizza, Chris and I look at each other with knowing smiles. Smiles of relief and knowing that he is on the road to a better state of health. On the road to being a normal little boy. On the road to doing the things he wants to do. Today on our way out of the hospital Evelyn and Christian had a couple of foot races. And the joy in my heart of watching him chase her through the lobby is almost unexplainable.  They were a normal brother and sister doing what they should be doing – enjoying each other’s company and trying to beat the snot out of the other one. I LOVED IT!!!!!!
Healing so well
These are Christian's famous angry cute
In all of this I need to keep my focus on God. Remember to not “worry about anything but pray about everything”. (Philippians 4:6) So that any worry that comes my way over the weekend or while we are waiting for his chemo to be done and the real trouble to start – I can have that worry, consider it then throw it over to God and say, ‘here – you deal with this and I will just trust the outcome”. This makes my life so much easier. I must remind myself of the miracles Christian has already experienced and trust that he will be valiantly led to victory. Its close. I can hear the waves calling our name. An 18th hole with Christian’s name on it. A morning of watching my three kids play in the sand – cancer free.

Hello....does it get any cooler than this?
This is Ryan saying, "chesee!"
Today I am thankful for:
1.     Christian’s new found appetite
2.     Friendly ACH employees 
3.     Friends that care

Saturday, January 21, 2012


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 9th 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 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

Wednesday, January 18, 2012


Christian at two

Quick update for all of those of you praying for Christian. The preliminary results of his CT scan this morning revealed NO CANCER!!!!! It has yet to be ‘read’ and reported by the radiologist, but all appears clear so far. Thank you so much to everybody for your continued and faithful prayers for healing and health.
Beautiful glass at the Children's

We were admitted to the unit today as Christian has an infection on his abdomen along his incision line from his previous surgery. He is currently being treated with IV antibiotics to ensure that any infection is cleared up fully before he begins his high dose therapy. 
Words cannot express the joy in my heart and the lift in my spirit. God is so good and will continue to be Christian’s shield and sword.

Today I am thankful for:
2. Australian open Tennis
3. Warm comfy beds on freezing cold nights

Monday, January 16, 2012

Great is Thy faithfulness

Today's hearing tests

I have been wracking my brain for the past week trying to think about what I should write. What would Christian want to hear during this part of his journey? We are standing on the edge of a cliff and I have no idea which way to move. I guess I have been trying not to think about what tomorrow morning’s CT scan will bring. I have felt all along that the cancer was gone from him body and I had really never assumed that Christian’s days were numbered anymore than yours or mine. But as the day creeps closer and closer thoughts come into my mind about the possibility of the scan showing tumors. I can hear the words of our Oncologist saying if anything shows up on the scans, “it is essentially the beginning of the end”. If his body shows signs of tumor growth they have in essence decided that he is not responding to the chemotherapy and there is not much left that they could do for him. I cried and felt sick to my stomach when he spoke those words but then I spoke to a dear friend who reminded me that the doctors don’t realize that we have God on our side….that it is already taken care of – Christian will be healed.
Beautiful Teddy Bear from random stranger who saw Christian
sitting at the hospital today
I don’t find it coincidence when a verse or song presents itself to me over and over. I know I have a hard time being still and listening to God so I feel it is His way of trying to get through to me. Lately I have been drawn to a song (which is really not my style of Christian music but beautiful none the less) called, “Great is Thy faithfulness” by Avalon.
"Great is Thy faithfulness," O God my Father,
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not
As Thou hast been Thou forever wilt be….
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Reminding me that regardless of when or where I am, whatever is going on in my life – good or bad that God is faithful to me in his promises. Promise that all gifts are good – strength for the challenges of today and bright hope for tomorrow. Hope that Christian’s CT scan tomorrow is clear of cancer. Not just any old hope but bright hope. And God never changes – He loves Christian, you and I, today just as much as he did yesterday and just as much as He will tomorrow. His love and faithfulness never change so when so many things are uncertain and unclear and unpredictable in our lives we can look to the One who is predictable.
Ryan as beautiful as ever
Christian has been thriving these past few weeks. He is gaining weight and mobility. He is fairly active and seems interested in learning new things. He loves his DS game and can figure out things that Chris and I can’t seem to do! Up to today he has already had a horde of tests and they have all been good. Tomorrow obviously is the huge test with his CT scan in the morning and his ophthalmology appointment in the afternoon with a dose of chemotherapy in-between! We were at the hospital today for his audiology appointment and his hearing is great! He has some mild damage from one of his chemotherapy drugs but a very very small price to pay to keep him around for another 80 or so years! As I type this we are sitting in bed together watching Australian open – he is purposely cheering for the player opposite the one I am cheering for. He is so cheeky now and I love it – I love watching his personality come back to shape. He closes his DS after a successful star wars mission and says to me, “just kidding I didn’t need your help, I won all by myself!” I am so excited to watch him get older, smarter, kinder, and more loving.
Me and Marilyn
We are so excited for Christian’s nanny and great nanny to come and stay with us for a while during Christians extended hospital stay. February 7th we are officially beginning our high dose treatment (barring Christian getting sick which would prevent him from starting). I am trying to envision what it will be like. There will be so much joy in watching the 7th day of chemo finish, as this will be his last dose of chemotherapy – ever. At the same time we will wait with bated breath for him to get sick. The doses of chemotherapy he will receive are approximately 10 times stronger than anything he has received so far. So it is expected that he will have some yucky and painful side effects. Our prayer is that the consequences of the chemotherapy are swift and accurate and that Christian will pounce the effects much like what he has done over this past year. Thanks for your prayers.
My 'room warming' gift of cookies, cool drinks and soft linens - heaven!

Today I am thankful for:
1.     Small cans of diet Pepsi
2.     Target
3.     Hot tubs, big comfy beds with huge duvets, lots of pillows and quiet, uninterrupted sleep. 

Monday, January 9, 2012

Boogers at the Zoo

First visit to the dentist
TV's on the roof ! Excellent!

It has been a long time since I have written a blog. I feel very unfocused, tired, unenergetic and spent. I honestly can’t even tell you what we have been doing these past few weeks. I said to Chris yesterday I feel like we wake up in the morning and we just beginning spinning like the Tasmanian devil – only this is no cartoon. We forget to give Christian his medicine, miss appointments, forget dates and the house never seems to stay tidy. Our whole house is or has been sick in the past few days so we are full of Tylenol bottles, snotty Kleenex and thermometers. On edge, waiting for Christian to get sick. I guess better now than in three weeks time when his high dose therapy will start.

Work it!
Working the dance moves at the Zoo
I need a break, sleep, healthy food and some exercise. Chris and I collectively decided that we each need to take individual mental and physical ‘breaks’ before Christian’s high dose megathon begins. Wednesday I am going on a road trip to Vancouver and Seattle to sleep, run and decompress. I felt so guilty tonight at the thought of leaving my family and Chris with three sick kids but I am on the brink of a breakdown. So Wednesday am I am officially off duty for four days while Chris mans the cave. (God give him strength!!!!) I can hear the water’s edge calling my name for a run and I am sure there is also a faint calling of my name by Target! Yahoo.

Enjoying the World Juniors with Daddy
There have been many fun days this past week and we are really trying to embrace the most we can of each day before our huge hospital expedition. We had a hot tub party at uncle Peder’s house yesterday, trips to the park, going to a World Junior hockey game and today, an outing to the zoo. What an unbelievable blessing this fall/spring weather has been and I am so thankful we are able to get outside. Christian has been thriving with his NG tube (tube that goes down his nose into his stomach for feeding and giving daily medicines) and he has finally developed a little bit of chub on his cheeks (both top and bottom!)

At last we have the plan in place for Christian’s high dose therapy. He is currently completing his final round of ‘regular’ chemotherapy which will be finished on January 31st. He will be admitted to hospital in the days following that last dose in order for him to complete the final tests to ensure he is healthy and has no cancer in his body. He will have a bone scan, kidney function, bone marrow testing, MRI and CT scan. Once the testing is completed and it is determined he is healthy and ‘cancer free’ (sounds silly I know) they will move forward with his high dose therapy. Which will consist of 7 days of extremely high dose chemotherapy (10 times stronger than any dose he has received so far). Then on the 8th or 9th day he will receive his stem cell transplant (his own cells that have already been harvested) which are given just like a blood transfusion. Then the waiting begins. It is estimated that he will get very very sick, with lots of mouth sores, body pains, nausea and vomiting and inability to eat. Our prayer is that this part of the treatment goes quickly and with the least amout of horrible side effects as possible. Our oncologist estimates that he will need a minimum of three weeks to recover but it could take months. Christian has been such an amazing fighter with God given strength and I believe he will smash the doctor’s expectations and recover with a speed they have never seen before.
Evan loves the animals. She wanted to go in and "pet the
kitty"a at the cougar exhibit!

Our prayer request for the next few weeks is that his tests come back free and clear of cancer and that he continues to gain weight and strength. We had a little episode today at the Zoo when Ryan decided it would be interesting to pull out Christian’s NG tube. So tomorrow he will have to have it replace (and most likely not under sedation this time) which Christian is pretty sad about but resigned to his obligations. This past NG tube was so great for him – he even threw up multiple times and it stayed down in his tummy which is a minor miracle in itself! So prayers for a positive outcome for that procedure tomorrow.

After my mini break I will blog again with more incite, a fresh outlook and more hope than my heart has room for.

Today I am thankful for:
1.Christian’s chubby rosy cheeks
2. Evelyn telling me, “I am a little sick with a cough”
3. Ryan’s new words, “Peppa” (pizza), “Bath”, “Hockey”, “Puppy”(which applies to any animal with fur)
Ryan feeling a little under the weather

Poor Ryan