The last few days have been nothing short of overwhelming for us, and not entirely in the negative sense of the word. We havent posted any pictures of him lately as it is important to us that the memory of him isnt tainted adversely by his present physical state. Over the last few weeks his liver and spleen have become quite inflamed leaving his stomach rather distended which turned his skin and eyes yellow. Because of this he is no longer eating and is losing weight rather quickly. His bone marrow no longer produces hemoglobin or platelets and they are at critical levels which has left him exhausted and prone to incredibly easy bruising and at a high risk for bleeding. It has been overwhelming to see him deteriorate and sometimes when we drug him up to keep him comfortable it’s hard to not feel like we are already losing him. I miss the sound of him walking in the hallway, or watching him explore outside, or even seeing that sparkle in his eye. He still is such a fighter though. Even though he can barely keep his eyes open or barely lift his head he still wants to get going on his car ride or his swing. We have also been completely overwhelmed on the opposite end of the spectrum however with how blessed we have been by all of your support. Today we had the pleasure of meeting Tracey Delorme as she handed us the cheque from the online auction for Lucian and we were intensely blessed by your overwhelming generosity. We never for a second have felt alone or disconnected. We keep hearing stories of people having my son on their mind 24/7 or people waking up constantly during the night to pray for our son. It is truly, truly touching. Something peculiar is happening in Lucians blood work though. All his levels are reacting the way we would have expected them to save for one very important level: his white blood cells. They seem to keep going down and are now within a “normal” range. It was expected that his white blood cells would steadily climb, just like when he was first diagnosed. Our best guess is that the donor’s cells are in fact slowing down the progression of the disease. In theory this doesn’t change anything but we are holding on to whatever hope we have regardless of how small that hope may be. Please continue to pray that no more cancer cells will be present in his white blood cells, that his hemoglobin rises, and his platelets rise. We are completely aware of the reality we are facing but we are mentally choosing to hope against hope. We cannot give up. I would regret it to the end of my days if I gave up now. No matter what the outcome I want to look back on these days and know we had the right mentality and that we didn’t give into despair. Thank you all for encouraging us to keep up the fight.
Posted on: Fri, 06 Jun 2014 04:33:57 +0000