I want to start Cap's story first by letting you know Cap writes his own stories - he always has and will continue through this journey. We've gotten a lot of questions about his name at the hospital so I mine as well start with that story. It started when Tonya and I were trying to come up with his name and I said to Tonya "why don't we let him pick his own name". So we thought about what the baby was making Tonya crave during pregnancy and for some reason is was a cappuccino mix. We instantly fell in love with "Cap" as a nickname and then when we found out many people were called "Cap" their whole life (who were actually named Casper) we decided to stick with the simple version.
Cap has written so many more stories since then. If you are around him for a little bit you know of his big heart, his warm smile, and his outgoing personality. He is drawn to people and people give him energy. He makes the most fun out of every experience and pushes constantly for what he wants in life. I know it has tested our parenting :) but it's why we love (and friends and family love) to be with him. Pushing for what he wants has set him up perfectly for the next story in his life - which is his battle in front of him - and the next story I will share with you.
Cap has been extremely healthy his whole life until June 24th, 2019 when he had headaches that wouldn't go away. When we finally got through the testing in the ER at Regions we received the news he has a mass in his head that is causing pressure and the headaches. As everyone can imagine nothing can ever really prepare you for that moment. After Tonya, myself and the boys digested the news we took Cap to Minneapolis Children’s which is where we were for over 2 weeks. On 6/25/19 he got an MRI to scan the area better and that night they wanted to relive the pressure so he had a surgery with Dr. Nagib (best neurosurgeon around) and a small line was put in and will stay there to let the pressure drop (which is has nicely) and stay equal through all the next stages. His surgery to remove the mass was on 7/2/19. The doctors mapped what they want to see and how to get into that area (on the left side of his head). Once it is out we will know a lot more about what the next steps will be. We've already prepared Cap and ourselves that it could be more treatment but there is no reason to look ahead. It's all about one step at a time, one day at a time, and even one hour at a time. I know the power of being positive and it's effect on well being. We will stay as positive as possible and help us stay in that mode.
The good news of the day is Cap has his appetite back and took a walk. He is joking like his normal self when he's not tired. When being pushed back on a wheelchair from the MRI through a tunnel from Abbot, the nurse Ben who was wheeling him said "Cap we've got a little climb here", and Cap said back in a tired, funny way, "well that's kind of your work" (in a funny way referring to the fact that he's not going to be able to help). Cooper, Tonya, myself, and nurse Ben all had a good laugh. It was a Cap moment. Another Cap moment came when he was recovering from the surgery (anesthesia was still in very good effect) Cap couldn't stop calling the nurses "amazing!" "You nurses are SO AMAZING", asking if he smelled (where did that come from?) :) and couldn't believe how fast the surgery was "those doctors are SO fast!" He felt like it only took one minute. In classic Cap fashion, his heart was on full display when he asked Grandma Tete to come closer so he could whisper (which the whole room could hear) - "I have the best brothers Tete, they are the best brothers ever." Straight from full on funny to absolute love.
Cap (and our family) has been overwhelmed by all the support. From time to time it just hits Cap (and us) and brings tears to our eyes but it's in a good way because we can feel all that love flowing through us. Those moments we have big family group hugs and feel all of you and the love. Thank you.
I know everyone wants to help in any way possible and we thank all of you for those offers. There just isn't a thousand things to do that we need help with (if feels like we've been offered that many times). If there is we will try to remember to not be shy and ask for help. Maybe this site will give people something to do by sharing some positive thoughts and love. I'll try to keep everyone posted as things go along.
With so much love,
Dave, Tonya, Cap, Cooper and Cullen