Skinny

Stacey and Christian (one of our unit favs!)

Its November 27 and this week coming up was meant to be the week that we would be celebrating the end of Christian’s cancer treatment protocol. This was to be the week to have his final scan, remove his chest tubes, plan a vacation and celebrate our defeat of rhabdomyosarccoma. But Christian’s cancer had a different plan and we are instead getting ready to complete our first five day dose of mega chemo.

We traded the frog for a dog!

It is no understatement that last week was one of the toughest weeks of our treatment thus far. The day that Christian was diagnosed with cancer was by far one of the worst days of my life. Only equaled by hearing a doctor tell me that our first-born child was not going to live to my due date. Equaled by Chris holding our first born, Jackie, while he returned to heaven to rest forever with his Maker.  So we have experienced some pretty heart wrenching times in our marriage. This past week we were pushed to the breaking point as we watch Christian slowly lose weight and strength. Lose his desire to move around and his ability to keep a good quantity of food in his tummy. Yet despite his dire circumstance he will usually bless us with a smile and make every attempt to ensure that his mommy and daddy are ok. I have pictures on my phone of him getting into the bathtub with his mommy and daddy – one of his most relaxing and favorite things to do – and they are so sad. I am not even sure how to describe his current state of health. He is ‘technically’ cancer free, yet his treatment has dropped him into the horrible state of health. His last scan determined that there was nothing dangerous going on in his abdomen but lots of abnormalities. He has swollen bowels, stomach, gallbladder, pancreatic duct and some free floating fluid still hanging around from surgery. So it is no surprise that he is having a hard time eating. He is not eating enough to maintain his body and he is getting extremely skinny; he has no energy and because he has lost all of his fat it has now become to painful for him to walk on his feet. Of all of the treatments that he has done this past year I can’t believe that this is where we are today. I feel like all the fight is gone from his body.

Collection machine

This past week he was able to complete his aphaeresis (process of stem cell collection) and he did amazing. He was able to supply his nurses with more than the required amount in less than five hours…excellent for such a sick little guy. The machine was big and scary and noisy but being our little trooper he just played with his star wars guys, watched TV and entertained his nurses!  Earlier on in the week they attempted to put in an NG tube in order to help him get some nutrition but it failed miserably (as I think most NG insertions do the first time) and Christian was not a happy camper to say the least. We will most likely have one inserted on Tuesday before he begins his chemo. as I know the doctors are counting every ounce he loses and gains. It is essential that he begins to gain some weight in order to stay healthy and have the strength to continue to fight. 

Chris, Evelyn and Pastor Doug passing time during apheresis

So this week will hold a few new ventures for Christian; another attempt at putting the tube down into his tummy through his nose and our first five days of chemotherapy. During the Christmas season the hospital does such a good job of trying to keep the place festive and light for families. Unfortunately oncology patients are not allowed to leave the unit to see the beautiful trees and decorations elsewhere in the hospital. I think I will have to arm myself with some decorations to fill his room with love and festive spirit. I am hoping Santa comes to visit the unit as I think our yearly Santa photo is unlikely to happen. I feel some sadness at trying to keep our family together at this time of the year. I know Evelyn and Ryan miss me dearly when I spend so much time at the hospital and Christian is also desperate to have me by his side, as I seem to have become his solid ground. How do I say “no” to either child? My heart is torn into many different pieces. I yearn for the time when our family will be a solid, healthy and energetic bunch. I pray that we get the chance to be in that place – and that when we get there I won’t forget how badly I wanted to be there.

Ryan rockn' the quad on the unit!

This week I am desperately seeking prayers for health for Christian. I need God to come into this place and pack on the pounds onto our little super hero. I need some strength for Christian to fight this next round of chemo. He needs some energy to play with his toys and play with his cousins. He needs to feel hopeful and to know that this horrible time in his life is just spit in the wind and soon things will be better. So much better. I need to hear God speak to me so I can have faith through this last difficult chapter.  Our family needs to heal and our family needs to continue to hold onto the hope and promise that God has given to us. God only gives good gifts and it is done.

The stem cells that will save his life in a few short weeks time

Please please please extend your prayers these next few weeks for Christian, for weight, for strength, for courage, for healing, for a body free from cancer, for hope. Thanks for reading

Sword fights with the boys!

Today I am thankful for:

1.     Christian telling me that Uncle Peder gives the best foot massages

2.     Monday morning dates with Chris

3.     Ryan walking all over the place – sideways!!!!

View from our unit room on a dark and snowy night