DEFLATED

It's never too late for halloween!

Dear Christian

Well my little man. Friday night and we are doing our usual – daddy has gone to hockey, the other monkeys are asleep and we are cuddling in mommy and daddy’s bed. Actually tonight there is not a lot of cuddling going on since we have all 17 of your hero factory men spread out on our bed. Regardless of how horrible you are feeling you still want to play with your toys and watch Home Alone (again and again and again).

We are doing chemo everyday, you get a small oral dose we can put in your G-Tube and once per week we go to the oncology clinic and you get an IV dose of chemotherapy. Yesterday we forgot to make sure that you got some anti nausea medication before they started your medication. And sure enough, almost as soon as they were done your chemo you did the classic grab your stomach, make kind of sick looking face and say, “Mommy, I don’t feel so well”. And we know from past experience that once you start feeling sick it is almost impossible to get on top of it. We got home from the hospital after a quick play at the play park (one of yours and Evy’s favorite places to go – you chased “cat lady” around the whole play park – putting her in your invisible handcuffs then leading her around like your prisoner!) and you were fast asleep. It sure does take all the wind out of you when you get your chemo. Like your sails have been completely deflated. I just pray mommy and daddy are making the right decisions for you. It has been almost 36 hours and you are still feeling so sick. Yesterday it was the ear-piercing headache and now today your tummy is horribly sick.

Please God tell me we are doing the right thing for you. And if we are not I hope You will grant us enough grace to provide for Christian what he needs to battle through our weaknesses.

Well it is now four hours later and we are still sitting in bed just hanging out. You are flying your piece of pizza around the room, shooting at imaginary villains and making the best machine gun noise I have ever heard. I marvel at your mind and wonder so often what you are thinking about. Sometimes you stare off into space and I wonder what you are imagining. Perhaps you are flying off to destroy some bad guys with your Hero factory guys. Or maybe you are flying off in a Pod racer with Anakin Skywalker. When you are done visiting that place, you look at me with this little goofy grin like I caught you doing something you weren’t going to share with meJ You climb across the bed to give me the biggest hug and tell me how much you love me. Earlier on tonight when you were sleeping I cuddled up behind and wrapped my arms around you. I prayed quietly in your hair, thinking you couldn’t hear me. As I was begging God for strength, peace, answers and healing I began to cry at my weariness and feelings of despair. Immediately you opened your eyes and wrapped both of your skinny arms around my shoulders and patted my back. As if to say, “it’s going to be ok mommy”.

I love to watch your face, you pick the lose skin off your lip and intently watch the pod racers on Star Wars, like you so desperately want to jump into the screen and fly right beside Anakin. Your big brown eyes and long eye lashes lull me into a calm like trance and I feel some peace.

I have to admit that every moment you wince in discomfort, or cry out in pain; every time you grab your stomach or tell me you don’t feel well I immediately have a horrible sense of doom. I can tell my weariness is growing by the day and I feel myself quickly losing control of my emotions. I yelled at Evelyn in the shower today because she was afraid to walk in the water. And then I immediately wondered what kind of person I have become. How much crap and uncertainty can one family take? How long before Evelyn doesn’t want to be my ‘best friend’ anymore. My prayer is that in the morning she won’t remember my harsh tone and will still think I am the greatest thing since slice bread. The thought that I could hurt my child’s feelings on purpose makes me want to puke. But I will cut myself some slack and apologize to her when she wakes.

It is now Monday night. It has taken me four days to write this blog. And in the past 72 hours I have gone through every emotion known to man. From Friday night on you got sicker and sicker. I wondered what was happening to you. I completely lost control of myself seeing you feeling so horrible, I have never felt so hopeless, tired, exhausted and desperate. I was desperate for anything and anybody who could help me. I went to church twice hoping that God would speak to me and tell me what I was supposed to be doing. How can I help Christian? Do we keep on the chemo that is making him so uncomfortable? Do I try something new? After speaking with the Oncologist numerous times we got on a regiment for medicine that seems to be helping him. But I have many many prayer requests…so get a pen a paper….

Christian's silly face

Please pray that Christian will not feel so sick from his daily chemotherapy treatments, please pray his mouth sores heal up, please pray his sensitivity to smells is diminished and he might start to eat again. Please pray he has more energy to play and be a normal five year old boy. Please pray that the chemotherapy is doing what it is supposed to be doing and his cancer is fading away inside of his body. Most of all please pray that the truth of God’s purpose for me and my family in the wretched journey is revealed so that I can continue to see each day with purpose and hope. And finally please pray that we would see an end to this trial in our lives, that the valley would open to a beautiful field of flowers and we can become a new family filled with the love of God and hope for an amazing future with all five of us together. Thanks for reading

Today I am thankful for:

1.     Putting up Christmas trees with my kids and my mom

2.     My husbands beautiful Christmas lights on our house

3.     People who are willing to pray for Christian and strength for Chris and I

4.     Watching Christian dance along at Zumba tonightJ

WHITE FLAG

Jayden and Christian meet in the Oncology clinic - there is
no better place to play. I love God for creating these moments

The last two weeks have been very hectic and full of emotion, both good and bad. Since the news of Christian’s latest relapse it has taken us more than a few days to get our feet back under us. It takes time to process what the doctors are telling you, ask God the questions that there are no answers too and then return to the place of faith and trust. The place where we once stood and will stand until this journey has reached its completion.

Recovery room 

I write this blog from the sunshine room on unit one. Christian is playing Xbox with two other teenage girls from the unit (ok, the girls are not exactly jacked about Lego Star Wars but they are more than happy to let little Christian rule the roost!) So here I sit and look out at Shaganappi Trail and watch the multitudes of cars going by and wonder, once again, what normal life would feel like. I look over at the girls; both bald and old enough to know exactly what is going on in their life, what the stakes are for them. This oncology family we belong to is so special and tragic all in the same breath. But I digress…

Fast forward a few hours and we are driving home in the dark on Crowchild trail – It has been a day of great turmoil and pain in my soul. I am driving in a funk, my eyes hurt and I can barely keep them open. My heart is breaking as I wonder if I made the right decision to leave the hospital with him rather than let him stay another day. He is still in so much pain and his anxiety levels are peaking.  Just an hour earlier the nurses attempt to peal off the tape and dressing from his chest. Skin and muscles sore from being manipulated and poked and the after affects of surgery leave him too afraid to move his head. His body has been bruised and battered by a surgery that did not go as planned and all I can do is stand there and watch the nurses cause him pain. The phrase, “means to an end” have gone right out the window. He is screaming at me, “mommy, I’m not ready, this is hurting, please stop!” What do I do with that? By that point in the day all I can do is walk out of the room and hope my mom can deal with what I leave behind. I can hear him yelling, “I need my mommy” and all I can think of is, I need my mommy too.

A few hours post op

The process of Christian starting chemotherapy was so surreal; I wondered how we could be in this place, again. We had a new nurse that spoke to me like I had not done this a hundred times already. I watched her start the drip and wondered if he even cared. I wonder whether he is going to get sick from the chemotherapy – maybe he wouldn’t even know what’s happening to him. Later on in the evening I had to push his daily dose of chemo into his GTube, it was the worst feeling knowing that I was putting something so toxic into his little body that I had to wear special chemo gloves and waterproof pad to protect everything around him. Yet here I was putting this drug right into his little stomach. They tell me at the hospital that from now on when I am helping him go the bathroom or if he is getting sick I have to wear gloves because his secretions are toxic. I take a deep sigh and wonder if this is really what I am supposed to be doing? I lay there beside him last night and rubbed his sweaty hair, his cheeks flushed with a low-grade fever. Whenever he has stressful events in his life he has these periods of separation anxiety, I am not allowed to leave his side, I am not allowed to even roll over in bed because then our heads aren’t touching. I feel so close to him, he hasn’t needed me in this fashion for many months and I had forgotten how dependant he is on me, and me on him. And I wonder how to keep giving control over to God. How can I even fathom letting him go?

Ok I got off track there, what I wanted to say was on the drive home, while I was on auto pilot, a song came on the radio that I had heard many many times before. Even thought the radio had been playing the whole drive I had not heard a single song. But immediately the words of this song spoke straight into my heart and I understood what God was trying to say to me. I understood that those where the words God wanted me to know right at that very fragile moment. A moment when I was questioning myself, questioning the choice Chris and I made to start chemo, questioning whether taking him from the hospital was right. I wondered how I was going to make it through this next chapter in our lives. Then I heard the words.  

The battle rages on

A storm in tempest roar

We cannot win this fight

Inside our rebel hearts

We’re laying down our weapons now

We raise our white flags

We surrender all to you

All for you

Love has come

(White Flag, Chris Tomlin)

And I immediately had a vision of me down on my knees in shear defeat, with my head hanging low but my arms outstretched with two white flags in my hands, waving as boldly as I could. I cannot muster the strength to lift my head but I can lift my arms to my God and say, I surrender. These white flags are the symbol that I surrender my son to You. We truly are in a war here. A battle between health and death; our own self-righteousness and surrending ourselves to God's ultimate plan. I know science cannot “win this fight”, but He can. And as soon as I do this I feel amazing relief and the peace of God’s love. A love so pure and inexplicable that He picked up the cross for us. Christian’s battle has already been won. And while I sit and worry and ponder my life, God is waiting for me to turn my face to Him and realize that the war is already over. Love has won.

Philippians 4:6-7 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God and the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

WATERSLIDES!!! Christian's absolute favorite

We continue to spend each day with as much joy and enthusiasm as we can muster. We thank God each morning for waking up and having the chance to spend time with family and friends. We were very blessed to be able to go to the Douglas Fir resort in Banff this past week to spend some much needed time on the waterslides and indoor play park before surgery. Unfortunately Christian’s GTube was accidently pulled out when he got to close to the water intake in the hot tub (ouch! – he is such a trooper – he didn’t even cry!) But the doctors and nurses at the Banff hospital were quick and caring and we were back in the pool two hours later.J  We hope to fill this week with play dates, Christmas decorating (Doug – your invited!) and outings with friends. Thank you for your continued prayers – it works – and God is listening to the cries of His people.

Have I mentioned how much i love this litle man????

Today I am thankful for:

1.Christian getting to go to his first birthday parties! Thanks Jayden and Gavin.

2.The waterslides at the Douglas Fir Resort

3.Christian asking for one his favorite nurses yesterday, “Mommy, where is Kakakaka?” (The sound of the bird Nurse Carol makes when she walks into his hospital room)

remember.....

Self Portrait

Dear Christian

Today I sat in the armchair with my head in my hands and cried. I have cried so many tears that today my eyes were dry and my cry was silence except for the intermittent sob of my heart breaking. I hung my head down low and wondered how I was going to get through these next few months, or weeks or years. I wondered what it would be like to lay beside you and we could die together and go to heaven, then I wouldn't have to feel the pain of you being gone. Then I thought of your precious sister and precocious brother and amazing father and I knew that this life God has given me is a gift that cannot be wasted on fear and pity. After a gentle and reassuring hug from your daddy I picked myself up and wiped away the sadness and immediately felt better at the release of emotions.

Christian and one of his favs

Today we went and spoke with your surgeon, Dr. Mary Brindle, the most brilliant surgeon ever. I have no words to describe how much I love this woman. Not just because she has saved your life so many times, but because she loves you with all her heart and would give her own if she thought it would help you. She was so exited to see you and was heartbroken at the news of your disease progression. Long story short, Mary decided it wasn't a good idea to remove the new tumor but we decided to try some chemotherapy and have a new central line put in your chest (called a port). It is easier to take care of and doesn’t have tubes coming out of your chest. Also we are going to have your stomach tube changed to a shorted one that won’t bother you so much. Today is Friday and your surgery is next Thursday. Which means we have six days to pretend this doesn’t exist. Six days to live with outthe words: chemotherapy, anti-nausea drugs, port, blood counts and hair loss. It is not without an incredible amount of sadness that your daddy and I chose to go ahead with a chemo drug that may result in your hair loss. I know how much you love your new hair, you are so proud when you brush it and put gel in, just like daddy. I know that having hair makes you feel like you are well. There is no way to hide being bald when you are five and I know you are going to be devastated when your hair begins to fall out. I am so sorry. I am so, so sorry. I am sitting here typing and crying these dry tears just thinking about the disappointment in your face when you realize you are going to lose your hair again.

That being said when we told you today that you had a new “bug” in your tummy and we had to start giving you medicine again to help, you were so brave and understanding. You know that we don’t have many other choices and I think you trust your mommy and daddy. When I was speaking on the phone with a friend of mine and we were talking about things that all oncology parents talk about, you rolled over and asked me, “mom, when will this cancer be over?” Well sweet baby that is my question as well. When will this time of tribulation and hurting be done?

The money you pulled out of your wallet for me for my birthday. You
gently put it in my hand and told me to buy myself  "whatever I wanted"

What I got for $2.76 - priceless

“Yea though I walk through the valley of the of shadow of death, I will fear no evil; for thou art with me; Thy rod and they staff, they comfort me.” Psalms 23:4. I know that God is not going to leave us in this valley of darkness and fear but He will guide us through it to the end. He will carry us up on His shoulders if it is required, He will lift my chin when I cry and reassure my heart that it will continue to beat.

My princess dress, flower head, storm trooper, gun toting 2 year old!

Your daddy reminded me today that God has consistently lifted us up during our times of extreme fatigue and weariness. He has constantly battled for you when others were convinced the fight was over. There have been many times when we thought that the end was in sight but God it always there. There to heal your bruised and battered body, there to lift our spirits and bring us peace. He is there to reassure us we are not alone. So Christian, tonight I am resting EVERYTHING in Him who said, “All things work out for good to those who love God…” Romans 8:28. I am resting in what we have already seen Him do for our family. My hope and faith in our future is in the hands of our heavenly Father who loves us more than we have words to describe. I must remember what He has already done for you, for our family and never lose sight of that. Everything will work out just the way God knows it should. AMEN.

Yesterday was my birthday, not really a birthday that I wanted to have with all of the sad and hopeless emotions going around but one I will remember nonetheless. I woke up with a horrible stomach flu but I pealed myself out of bed – because you said I had to come and see what you got me for my birthday. I walked down the stairs to see Ryan holding the most beautiful flowers and all of my beautiful children in their PJ’s singing me Happy Birthday. Sick or not, it was one of my happiest moments yet as your momma. I am hoping next year my birthday with you will be one of rejoicing and embracing life as God intended us too.

Today I am thankful for:

1.A really hot bath when you are feeling so yucky.

2.Being blessed by George MacDougal High School – what an amazing community we live in

3.Holding Christian’s soft hand while he’s sleeping and having him squeeze my hand back. 

116 KISSES

Pumpkin Carvin

Today I borrowed this prayer from my father in law, “God, you are the ultimate Father and Your love is perfect. Christian truly belongs to you and I am blessed to be the earthly mom you chose for him. I have to let go of him now, not in defeat but in trust that You will do good, (whatever that looks like.) I can’t do anything now but choose to trust You with my most precious gift. Come and be his Father as I pass control over to you now. “

As many of you know yesterday Christian had a CT scan. The scan showed us that he has a new tumor growing in his abdomen. We don’t know any specifics but our ‘options’ will be presented to us tomorrow when we have an appointment with Christian’s oncologist. Once again I ask you to drop to your knees in prayer for our family. Pray for peace and strength for Chris and I (as well as our mothers who are both here with us) and physical strength and healing for Christian.

Evelyn and Christian loving West Edmonton Mall rides.

When I first heard the news I was very angry with God, I wondered where He was in all of this. How could this possibly be happening to us again, to Christian? How much does this little man have to endure? I swore at him and wondered if He even existed. I have since repented for swearing at the creator of the earth and questioning His plan J. The only way our family will get through this is to lean on God, totally and completely give ourselves over to Him and trust. This will be my biggest test of faith yet; in this of case of complete desperation will I be able to give everything over to Him? I don’t know but I am going to try because a life without God is a life without purpose or hope. We are going to try and stay the same and focus on spending as much quality time together as a family. Lots of cuddles on the couch and in bed, lots of time making cookies in the kitchen, lots of time spent swimming at the pool and relaxing in the hot tub. Lots of Lego Hero factory battles with Nanny and reading books with Grammy. Lots of play time with his cousins and star wars battles with uncle Peder. Lots of time to learn to really enjoy this life that we have been given, embrace it for its fragility and awesomeness.

Today I am thankful for:

1.All the kids sitting in our bed together watching, How the Grinch Stole Christmas

2.Jesus (that was Christian’s input)

3.Christian and I counting our kisses (we are up to 116)

Evelyn and Christian trying to decide whose taller!

What a pair!!! (Daddy and Christian at school)