Caleb Update 9/18/22

First, we want to say thank you so much to everyone who has sent us texts, emails, messages, phone calls, cards, gifts, pictures, donations, thoughts, prayers and just about anything else positive we can think of. These last couple of weeks have been some of the hardest of all of our lives, and we can’t tell you how much it means to us that we have so many people in our corner.

On Labor Day weekend, caleb started to have a lot of complications. He hadn’t eaten much for quite some time and his nutritional status was very poor. This led to a whole slew of things including having an NG Tube placed to feed him, TPN - which is nutrition through his veins, repletion of his electrolytes which were out of whack, as well as his blood pressure dropping extremely low every time he would stand up. We also found out that the chemo has effected how his liver is functioning, causing his abdomen to fill up with fluid, and he needed aggressive diuretics to try and remove the excess fluid. Fortunately this should fully heal as his treatment changes and with medication. This all led to being put on a morphine infusion to help manage his pain which has helped a lot. Over the last couple of days he has finally started to feel better and although we are still fighting the belly pain and his fatigue from treatment, as well as continuing with his tube feeds, we are in a much better place than we have been.

This Wednesday is his follow up bone marrow biopsy at the end of induction. We will know a lot more about what lies ahead for all of us once we know whether he is in remission or not. 

Meanwhile, our parents have had joint custody of Felix and although they are exhausted, Felix has been more than happy to be shuffled around and spoiled left and right by his grandparents. We miss him so much, but we know he is being showered with love at every turn. 

As for the two of us, we are just trying to take things one day at a time, which is difficult. It is easier to do when we are focusing on Caleb and making sure he has everything he needs and is comfortable. This coming week will be the first step of many in this new journey we are on, and we are just hoping for the path with the most options to make him better.  We do feel the incredible support of our amazing community and we truly couldn’t do this without you.  Thank you so much!