Goodbye to you

Yesterday we returned home from our semi successful road trip to Edmonton only to have my mother show me the newspaper, more specifically the obituaries. A section I am always afraid to look at because I don’t want to see anymore young faces staring back at me. On Tuesday afternoon a young man by the name of Clayton was looking back at me. He was diagnosed a few months after Christian with the same type of cancer – they battled together. He was 17 years old when he lost his battle to cancer and it has hit me hard. Clayton was a friendly face we would often see in the hallway at hospital. Christian and he were often neighbors and he was always asking how Christian was doing. Clayton would say what a brave little boy Christian was, how strong he was and how he inspired him. So to imagine him gone, I feel such a huge sense of sadness for this earthly loss of a joyous spirit. Somebody who put their own horrible diagnosis aside to ask another little boy how he was doing. So farewell Clayton, I pray you are resting peacefully with the Father.

Awesome storm trooper ballon from "With a twist"

Today is plus 43 only 57 days left until we can leave this nightmarish year behind us. It is very nice to be at home and not travelling to the hospital constantly. Unfortunately I had these unrealistic ideas of what life would be like when we got home. I just assumed we would walk in the doors of our home and life would be great. Well it is true what they tell us at the hospital that the weeks/months right after transplant and discharge are just as difficult and in some respects – more stressful. Nothing will ever be as horrible as watching Christian throwing up mouthfuls of blood and tissue or watching him lay in a bed in the ICU hooked up to a ventilator and numerous pumps. But after we got discharged and sent home I so desperately wanted the journey to come to the end, I wanted to close the book and start a new one. But the chapters but keep going on and on. Every pain, every wince, every, “mommy I don’t feel so well” brings instant shocks of horror and like bile in my throat I a force down the bad thoughts and hold onto God’s promises.

Enjoyed a Flames game courtesy of ticket donations to the ACH

When we first got home we had a huge cornucopia of medications he had to have each day and trying to remember which ones and when was more than my worn out brain could handle. On top of that, the medications seem to make his stomach hurt and vomit would shortly ensue.  He didn’t seem to be eating or drinking as much as he needed to in order sustain himself, this combined with the difficult night feeds led to anxiety levels reaching an all-time high. Thankfully his stomach sorted itself out within a week or so and as of today he has gained almost three pounds! Yahoo.

Lovin the rides at WEM

Unfortunately we had to open another chapter in Christian’s long, drawn out story this weekend. We had been in Edmonton for only a few short hours when we had to make a trip to the hospital because he was in agonizing pain when he tried to pee. 18 hours between urinations, lots of pain medications and some sleepless nights later we have discovered that he has a blockage (you know where!) that is not allowing him to pee without intense pain. So he will require a small day surgery to fix the problem (I will spare you the details but you can probably imagine) and then perhaps we can move on. It seems that there is always one more thing with Christian, nothing is ever clear-cut or as it should be. Not that cancer is following any rules either.

Ryan and Grandpa trying to install a new dishwasher!

This little road trip up to Edmonton to visit my dad was intended to be a warm up vacation for our trip out to the coast. Testing the waters (or Ryan’s tolerance for driving!) so we can prepare ourselves for a much longer drive in a few weeks time. Now I am apprehensive about going because I am thinking if you can end up with a blocked “pee path” then what can’t happen? Trust Trust Trust Trust Trust. I am creating a new mantra for myself so that I can enjoy the days. It is so exhausting to stay upbeat and creative when things are dicey. When Evelyn tears her books to little pieces at night when she can’t sleep. When Ryan throws his food of his tray and yells, “owwww”. When I think I want to just crawl up into a hole and sleep for days – I will think of Clayton, and Christian and Taiya and Diamond and Maxim and Julia and Ty and all the other kids on the oncology ward who don’t have that luxury. Thanks for reading.

Watching for puppies!

Today I am thankful for:

1.     Watching my kids play together in the backyard tonight

2.     Sitting on the couch with my dad at night cause neither of us can sleep

3.     The rides at West Edmonton Mall

4.   Taking the kids to see "The Lorax" courtesy of Jamie's Preschool - watching Evelyn yell in shear terror but not be able to take her eyes off the screen was priceless! Listening to Christian sing, "let it grow" at the end of the movie. What a cool day.