Plus 7

getting ready to go to xray

I don’t think I have the words to describe the past few days in our seemingly never ending journey. Christian continues to get sicker as he tries to cope with ridiculous amounts of pain. I don’t think I can even comprehend what he is dealing with. Yesterday he was throwing up mouthfuls of blood and tissue as the lining of his throat is slowing sloughing off. He is down to bare muscle and fragile nerve endings and every swallow, cough, hiccup or movement of his vocal chords sends him into fits of panic and suffering. I thought that I had watched him suffer before nothing compares to this constant pain and he rarely sees any reprieve. Every ounce of pain medication and sedative they throw his way – he metabolizes like sugar in water. The statement “one day at a time” has never been truer than right now as I can't even fathom how he would survive another week of this agony. I guess this is the blessing of pediatrics as Christian really has a limited concept of time. So I try to tell him that this will all be over soon but that doesn’t mean much to him. For him, right now he is experiencing pain that seems to have no end. I am constantly praying that God would show us a miracle and have his stem cells graft swiftly so that there would be a quick end to this trail for Christian.

bed bath!!!!

We are cuddled in his hospital bed as he has some relief (praying its not temporary) and he sleeps with gurgling sounds that accompany each in and out of his breath. His chest is full of fluid that he can not swallow nor cough out. I am very thankful that the pain team was in his hospital room this afternoon to witness one of his nightmarish “attacks”. A plan was quickly formulated to help Christian cope and try and get some rest. Despite everything that he is going through he, once again, amazes me with his patience and fight. He has done so many adorable things today I wonder when my heart will finally explode from love. During one of his horrible attacks I tried to get him to focus on his breathing. He put his skinny arms around my neck and pulled my nose to his nose and we breathed in unison. He calmed quickly and it felt good to be able to bring him some focus and peace.

More of our awesome unit nurses

In the midst of everything happening, Christian had to have some x-rays (which he brilliantly followed orders and held still), an IV poke for blood tests, a blood transfusion, his daily anti-coagulant injection and a dressing change. Tonight when he finally settled down, his eyes puffy and red with single tears running down, his lips swollen and sore, his nose runny from being so upset, I looked at him and thought that tonight, if ever, he needs help. I instantly thought back to an email my faithful sister in law wrote me declaring that God had hoisted Christian up onto his shoulders for this crossing of the finish line. And I can see it. I can see the end in site and I have never been more thankful that when things are falling apart around me I can look up to the heaven’s and proclaim to God that I can’t do this alone. Of course Christian is being guided and held high. What an amazing photo that would be. A black and white shot of Christian holding onto God’s hands as he rides high on his wide shoulders over the finish line. Crossing over a line drawn on a sandy beach with a banner above them that reads “Finish line” with a time of 10080 hours. He is gently set on the ground after giving Jesus one amazing hug then runs into mine and Chris arms – that we would get to keep him for another season. That God would deliver him back to us – literally. Immediately we grab our bucket and shovel and head to the shore line.

Today I am thankful for:

1.     Our good friend Taiya getting discharged from the hospital after completing her Cancer treatment and walking out the doors – in remission.

2.     Surprisingly good Chinese food from the hospital cafeteria

3.     Brenda’s heart shaped cookies. YUM