Fun in the Summer Sun

Love him more and more each day

Can't wait to test the waters! Filling the pool is the best part!

Tomorrow is the day. CT scan day. Day to determine if the radiation was the success we have been praying it would be. The scale is set to tip in our favor and we are destined for a positive outcome. Our prayer (if you are reading this before 930am!) is that his tumor has dislodged itself from his inferior vena cava, the small finger like extensions of the tumor have been blasted into oblivion and the large mass that was remaining is now a small hard non living lump – death by copious amounts of chemotherapy and radiation.  As a family we are trying our best to stay positive and enjoy the summer. It has been raining so much but the few days it was nice we were sure to get out the pool so the kids could enjoy some time in the sun. Having the park in our backyard is such a blessing and Evelyn is in “play park” heaven. 

 We were blessed with tickets to the stampede (thank you Starlight!) so we enjoyed family day at the rodeo. It was a great escape from the everyday. Christian was enthralled with the midway and all the rides. The best part of the day was the band of winds playing outside the grandstand – Christian couldn’t help himself but to get up and dance!

Dancing with the Band!

We did have a run to the hospital yesterday evening as Christian has been struggling with some gastrointestinal issues (darn sewer pipes!) and his body was battling hard but ended up getting a fever which means a trip to the unit for antibiotics.  Luckily his ‘counts’ were fairly good and we only had to stay for his meds and a blood transfusion, and we were home…….at 430am. YIKES. 

Evelyn loving life!

I think the chemo has gotten to his brain!!!!!

Excited to be at the Rodeo!

Please enjoy the pictures and think of Christian tomorrow. I will post some results as soon as we know. Mostly likely it will be Tuesday – our next big chemo - when we meet with our oncologist again.  From there we will either have a surgery to remove the remaining mass or wait it out until November/December if the results are not optimal.  If we are so lucky we are faintly entertaining a trip home to Nova Scotia. Unfortunately day to day, hour to hour living doesn’t bode well for a family trip across the country!

Today I am thankful for:

1. Backyard pools

2. Christian doing "This little piggy" on Evelyn's toes

3. Bunk Beds

Travelling Family

Relaxing with dad on the stoop!

I have spent the better part of an hour reading back over my past blog postings (starting at the beginning), and I am amazed at how far our family has travelled and it has only been six months. Six pivotal months. Six months that has seen so many changes. It has taken Ryan from being almost a newborn to a full fledged red headed screaming, food sucking ball of blubbery joy! It has taken Evelyn from a toddling little cutie patootie to a two year old brilliant, walking, talking tower of terror! It has taken Chris and I from a stage where we occupied our life with things we thought were important to a time where life is the most important thing. It has taken us to a stage when time is measured in hours and fevers, by doctor’s visits and blood transfusions, by needles and dressing changes. But most importantly is had taken Christian from being a very very sick little boy to a healing 3.5 year old mature little man. He has transformed in a little person whose strength and resiliance is beyond my comprehension. He has put up with so much, fought so hard and battled this tumor to a point where is now exhausted and somedays has troubles getting by without having a nap or a mental breakdown and most days he has both! He has such a frail vulnerability that I sometimes forget he is only eight short weeks away from turning 4.

I feel like we were already discussing life's twists and turns....

"being strengthened with all power

 according to his glorious might

 so that you may have great endurance and patience," Colossians 1:11

I feel sad that he is so skinny and his weight is not improving but then I read back over the blogs and I am reminded of just how far we have come. We spent a long time in the hospital with him quite sick, not eating, moving - nothing. So I remember the first night when Christian asked Chris and I for pizza. It was almost midnight but Chris was so elated he ran out and got him a pizza and I think both Chris and I shed tears as we watched him devour a slice a pizza. Probably the first real piece of food we had seen him eat in weeks. And I remember when we brought him home after his first month in the hospital. I recall that all he could do was to lay on the couch and we would be ecstatic if he would walk down the hallway, smile or engage on of us in a game or book. So things really have gotten better, times change and our focuses change but the end goal is what occupies my mind. Christian needs to be cancer free. 

So to say he is doing ‘well’ is true, the fact that he can play and run and eat and enjoy the outdoor pool – but he still has cancer and he is still fighting for his life -everyday until the cancer cells are all gone.  And what matters to me the most is that at the end of his treatment when we sit down and speak with Dr. Lewis after his last scan in December, he tells me Christian is cancer free.  It will take a full eight years before he can be considered cured but if he can run, play, grow and enjoy his little life - well that is all i can ask for.

Love Chapters!

So the goal for the end of the line is set. The journey along the way will be filled with highs and lows. This journey is what we need to remember and embrace. Embrace it because it is our life and we must not wish it away. It is God's will that we travel this road together as a family and as a community.  It is God’s tool for teaching us. Teaching us to be better parents, people, friends and sisters. The journey is what will make us strong; the journey is what will make our marriage better. The journey will give us understanding and compassion for other people who are sick and underprivileged.  We cannot control which way we will travel on the open seas but we can control our sails. We can set our sights on the important things in life and pray that these lessons will remain strong in our memories. We can chose to focus on the blessings we are given, the friends we make, the amazing things we will see and the experiences we will have with our children. I am so blessed to have the opportunity to set this time in our lives to writing, that I will have the chance to look back and read about an moment of time that was difficult beyond understand and amazing all at the same time. A moment to remember my children just as they are now – cute, irresistible, cuddly, soft and the best of all – mine! 

So five months to go and no guessing what the immediate future holds for Christian. I am praying his endurance holds up and he is able to enjoy the summer. He is very lonely for friends to play with so please stop by or call for a visit! I am praying the tumor is shrinking and dying off as I type this. I am praying that God will continue to grant me peace in my heart. I am praying that understanding of Christians cancer will grow and the lessons we garnish from this experience will be life changing.

Chris donated blood today for the first time in years (I was rejected due to low hemoglobin…isn’t that a funny twist of fate?) and it was a great lesson for our kids to learn about the simple things that we can do that have such a huge impact on others. I feel when most people think about saving someone’s life by donating blood they refer to a picture of an emergency room and a guy losing blood from a gun shot wound. That may be true but there is nothing more real that a whole pint of red blood draining into Christians central lines. I am not being ostentatious when I say that it could be you to save Christians life. Without his seven blood transfusions Christian would be too sick to receive his chemotherapy treatments. Without his chemotherapy and radiation treatments he would have succumbed to his tumor. So with every transfusion he receives his little life has been spared. And not only Christians but every other little boy and girl whom are RIGHT NOW sleeping in the oncology ward at the Alberta Children’s Hospital. So thank you to everybody who has taken time out of their busy schedule to donate. Thank you to Reagan and Louise who came out to the Genesis place tonight to donate. 

Something about the bike helmets!

Today I am thankful for:

 1.Candian Blood Services

2. Costco – what is in those hot dogs?

3. Watching my kids enjoy the play park

Can you believe this is Christian - he has a twin named Ryan!!!!

Disappointed? I think not!

Well June 30^th has come and gone and obviously we did not meet our goal of getting 1000 people to sign up for the one match bone marrow registration. But we did get 179 people to sign up – and that is 179 people that might have not signed up otherwise. 179 people who decided to put themselves out there with the hope of one day saving a persons life, a child’s life, a strangers life. 179 people who honored Christian’s fight with cancer and many more people who tried to sign up but were denied for one reason or another.  We learned that there are many stigmas associated with bone marrow donation – a plethora of myths that seem to keep people away from committing themselves to bone marrow donation. The main concern we have heard time and time again is – “I heard it really hurts”.  Firstly, registering does not mean that you will have the HONOR of donating, only that you MAY be asked. Secondly you are asleep when they remove some of your bone marrow (which your body quickly replaces) so you don’t feel a thing. And lastly – would you look into my son’s eyes or some other person who is going to die unless they receive a bone marrow transplant and tell them you would like to help but you are afraid of a little pain. I THINK NOT! So kudo’s too all who have signed up or tried to sign up. If you have not done it yet – DO IT and let me know so I can keep adding to the list. 

Please remember to donate blood this week if you have not done it yet. Christian has received no less than 7 blood transfusions (I am starting to lose count) so it is more important now than ever to get out there and give blood. Airdrie is hosting a blood drive on July 8^th for those of you who live close.

I apologize for taking such a long blogging hiatus but with the move to the new house, chemo, Chris’ golfing trip and general mom duties – I just have not had two hours to sit at the computer and type.  Christians last big chemo session on Tuesday went well. He did end up getting sick (briefly) which has not happened for a while but being the trooper he is recovered quickly and was on the golf course with Chris and our good friend Jason Jaffray  by Thursday afternoon. He loves to drive the cart with Dad and tee it off when time allows! He did find out it is possible to sleep on a golf cart quite comfortably as he spent the whole back 9 dreaming of golf in Hawaill curled up on Dad’s seat!  We are eagerly anticipating the Jason Jaffray Golf Tournament being held in Olds in July as I am sure that Christian will be the star of the show!

We had a great weekend attending Ashley Jaffray’s wedding (she was a stunner!) in Leduc. Throw in a little baseball, lots of sun, treats with grandpa and some wedding dancing and it was such a great break for our family. Our children continue to amaze us with their patience and kindheartedness (our waiter at breakfast this morning might want to refute this statement!) and it makes our family trips so much nicer for Chris and I.

Ashley's beautiful outdoor wedding!

What’s next for Christian? On July13th he will have his second restaging scan. This scan will determine whether the tumor has shrunk enough to be removed surgically. The tumor needs to have recessed out of his inferior vena cava or else surgery will not be possible. Our prayer is that the tumor is small enough and in a location such that surgery is safe and ‘easy’ for the surgeon.  Regardless of surgery, chemotherapy will continue each week until November. Christian is doing well – enjoying his new fuzz – which he loves to style with some mousse each morning. But he is reluctant to talk about it falling out again as it inevitably will once all his chemotherapy drugs are back on board. He is smiling lots and enjoying his new home and space. He does get tierd very easy and we are having a hard time finding pants that will fit his tiny waist. For the wedding this weekend he wore the same pants he wore to Peder and Ryan’s wedding in Mexico when he was 17 months old – a bit sad.

Growing up before our eyes...what a handsome little man...and his fuzz!

I will try to blog a little more often now that we are more settled. Thanks for all the well wishes and support we have received from so many different people. It lifts us up and gives us hope to know that somebody is thinking of our family and of Christian’s struggle. Thank you to anyone who is willing to dare and think about what is would be like to live in our shoes.

Today I am thankful for:

1.     Steph and Greg’s Crayola bonanza for the kids

2.     Christian’s amazing dance moves

3.     Hot sunny days spent at the park

Rub A Dub Dub - Three cuties in a tub!

One of his favorite places - CHAPTERS!

Trying out the new battub!

There is so much to be thankful for. There are a lot of good things going on in our lives despite the turmoil we face each day. Christian finished his radiation last friday - yahoo! Chris and I celebrated our 5^th wedding anniversary - yahoo! and we moved into a house with my mom - our new home - yahoo! I am so grateful that my children will have the opportunity to get to know their grandmother more intimately. An opportunity that did not present itself to me. I have always felt that children deserved as much love as they can get. And what a gift a granmother, a nanny, an opa, a grammy can be. The love of a mother’s mother - a ‘grand’ love.

Love the Kleins - steady friends who are always ready to help us  with whatever
Babysitting, moving, feeding ryan lobster!

We are grateful for the sun that showed up these past few days and we are grateful for the rain that has made everything green. We are grateful for friends and family who support us. We are grateful that Chrisitan is doing well and not spending extra time in the hospital. We are grateful for the nurses in the oncology clinic who love Christian and whom he loves in return. We are grateful to God who gave us the words, “I can do all things through Christ who gives me strength”. Because we need him now. We have been brought to our knees, a gift to realize how powerless we are without the love and Grace of our God. But also a gift to realize the strength that God can give us. And that none of us is deserving of the things we receive each day yet we continue to receive them. We are blessed.

Cupcakes for radiation party

Life is good!

Radiation, Rides and Superman!

Big and small - love the boat ride!

Smiles, smiles, a hot dog and a few more smiles.  What a great day at Callaway park courtesy of Jamie’s Preschool (a preschool in Calgary specifically designed for immune suppressed children).  It is a yearly event hosted by Callaway park where they graciously open their doors for a private session for the fragile kids of Jamie’s pre-school. The school genially extended an invitation to any child currently battling cancer and what a great gift for Christian. In a year when he is limited by so many things it was so sweet to have something special for him to do.

I am in control!

After our radiation session at the Foothills we saunterd down highway 1 and made our way to the park. All of the children spent the whole morning with ear to ear’s and Christian was on cloud nine.  Our wonderful host, Austin, took the families through the park stopping at each of the kids rides for a turn or two! The rollercoaster, bumper cars and carrousel where the hits of the day. Before lunch Austin opened up the big rollercoaster for the adults. What a cool thing to do for the parents and siblings in the group and a good reminder that cancer affects the whole family. And the whole family needs support, love and fun! After a morning of ‘ride gluttony’ Callaway Park put on a barbeque for the kids – so it was hot dogs, chips, drinks and ice cream all around. Christian downed almost a whole hot dog and we were off to the hospital to get his chemo #22. This put Christian officially past his half way point. Five long months – it feels like we have been doing this forever  - in fact I can’t really remember what life was like before Christian got sick. What occupied our time? What was really important? These are lessons I pray I can keep in my heart. 

Kissing on the rides - is this allowed? 

Chris and I continue to feel so blessed by the people are around us. I truly feel as though Christian has this amazing spirit that draws people to him and newcomers have no option but to instantly love him! Recently one of Christian’s favorite things to do is to accompany his dad to Golf Town. The lovely staff at the Signal Hill location knows Christian well and welcome him to the simulator so he can hit a few balls. Earlier on this week he brought his driver with him (just in case!) and of course was able to hit a few balls.  He was then presented with the most amazing club cover, which he covets. The cover is a sign of Christian’s strength and, I feel, will for the rest of his life be an indicator of the super human strength he has shown in this battle for his life. 

Today I am thankful for:

1. Callaway Park

2. Stony Trail (that's for you Doug!)

3. Warm, soft comfy bed with Christians skinny arms on my chest

Bumper car champ!

Doesn't the smile say it all?

MY HERO

There are not too many words needed to accompany these pictures.  The treatment for cancer is just about as scary as the cancer itself. Our fantastic radiation tech Selema, (who is assigned to be Christian’s buddy), brought me into the radiation room so I could see Christian going into his blue body cast and getting preped to start his daily treatment. It instantly brought tears to my eyes. Thankfully we only have five treatments left.  Enough said. 

Trying to recover from chemo and radiation on the same day

Propofol - drug that puts him to sleep - leaking - OOPS!
Stickers used to guide radiation tech

Seleman and Christian chillin' before sleepy time!

Ready to start

Today I am thankful for:

1.Grace

2.The smell after the rain on a warm spring evening

3.Cereal

Radiation Machine

Store up for yourselves treasures in heaven....God said

Soccer goal celebration !

I am sitting in Christian’s room and watching him sleep. The radiation and chemotherapy is demanding more and more from his little body. The drugs we so desperately seek to destroy his tumor are bringing him down and the implications of having a child with cancer are only a fever away. We are thankful to the means that are destroying his tumor but we are also at their mercy. The side effects are a small price to pay and we are thankful that the Children’s hospital is able to help us manage his symptoms.  As we speak somebody else’s blood is running into his heart to be disbursed to the rest of his body. This will be his fifth blood transfusion and once again a stranger is to thank for saving our son’s life.

 Thank you to my colleague and friend Nicole, who since Christian has become diagnosed with cancer, has signed up for the bone marrow registry and has recently received her three times blood donation sticker.  It is the good in people and the good things that people do that make this journey easier to travel. I think back to the day not too long ago when the librarian from Chris’ school and her mother showed up on our doorstep with a gift for Christian. They wanted to know exactly what to pray for so they could visualize Christian getting better. It made Chris and I feel lifted up to know that people are continuing to think of Christian and praying for his healing. It has been a long haul so far – can you believe almost five months has passed? Ryan was just little baby when we started and today he crawled right out of Christian’s hospital room and into the hallway! Next week will officially be our half way point of treatment and we are cautiously looking for the light at the end of the tunnel.  Chris and I are both wondering if life will return to the way it used to be…..  is that even possible? I have been told by other parents on the unit that nothing will ever be the same. I like to think of this as a gift. That we have had the opportunity to look death in the eye and then realize the potential and opportunity that each day gives us. The opportunity to be thankful for every breath my children take, every smile, every giggle. It helps me to be thankful for the times when Evelyn wakes us up in the middle of the night with her legs straddling her crib and she is saying, “Yahoooo. Giddy up Giddy up!” It helps me to try and be calm and be still and look around and take a breath and say thank you. I know a lot of people who know me would find it hard to believe that I would sit still and relish in the day but I do try. I know I enjoy my children more, I try to get angry less, and I feel sympathy for those in need. I keep hearing the verse in my head from Matthew 6:20, “Store up for yourselves treasures in heaven,”.  Not to be focused on material wealth but things that TRULY matter in the day. My family, my children, their happiness, the goodness of mankind.

Golfed a full 18 - what a great day

On a lighter note…..thank you to my pops who had us down for a visit to St.Albert this past weekend. It was sooooo relaxing and calm. Christian and Evelyn had a great weekend of swimming and watersliding, soccer in the back yard, every play park in the city of St. Albert, golfing with dad, and a small amount of children’s festival. We ate good food and drove around a bit and just hung out as a normal family might.

SUPPOSED to be spiderman but Christian wasn't convinced! YIKES

Today I am thankful for:

1.     Good friends (thank you so much for your encouraging words Kirsten)

2.     Picnic’s in the park

3.     Evelyn wanting to help Christian at the hospital (picture her running down the unit hallway with a urinal in each hand!)

Cinnamon bun with grandpa....life is GOOD!

Tales of Radiation

Radiation is the topic of the day around our house lately. People ask us how we are doing and the general response has something to do with Christian’s radiation. How he is feeling, which is fairly well, although he is getting more and more tired each day. How are we doing, which is well considering we are not the ones receiving the radiation! However, I am not doing to lie, I am NOT used to getting up at 630am every morning! But as Chris and I quickly realized the drive to the foothills everyday is beautiful as we get to stare at the mountains for most of the drive, unfortunately at some point we make a sharp turn and the then the view off Crowchild trail is just not as nice! I attached some pictures of Christian’s daily radiation encounter so everybody can see what he is doing and the things he is seeing and experiencing.

His "RADIATION" Calender...sticker for each completion until #28

"Day Room" where he goes to sleep and wakes up each day.
His amazing nurse Patty (L) and Resp. Tech (R)

Trying to wake up from daily anesthetic

Today Christian completes his 17^th treatment so we only have 11 left. His last radiation treatment will be on our five-year wedding anniversary. I can’t decide if this is a good gift or not! Anyways it gets us thinking about the path our life has taken since we decided to get married, the dips in the road and the peaks of the mountains we have climbed. The beautiful things we have seen and experienced and the hardships we have known – I don’t think we would change a thing. It is truly the journey and not the destination that make this life special. So each day we squeeze our kids tight and make the best of each situation we are presented with.  Tomorrow is not a right but a privilege and even though Christian is the one who is ill, none of us are guaranteed our breath so we must grab onto life and go for the ride. Don’t hold back and wonder…… go forth and explore and discover.  

My favorite quote is,” Life is not measure by the number of breaths we take but by the moments that take our breath away”.

Evan and Ryan enjoying each other at the park