9-13-16

Drew continues to do very well post transplant number two. I'd say he's almost 100% again. We are gradually increasing his feeding rates throughout the day and night to allow for some breaks, which is great for him. He does fine with the backpack on, but to let him run around without it is great. One weird side effect that we are seeing is that he's losing his fingernails! We suspect it's from the first transplant, the strong chemo that he received. What started as a line on all of his nails, is actually a split, a new nail is growing in from the back and the old ones are flaking off this week. They seem to be held on by the cuticle skin on the sides, so when one is ripped off, it's painful. We've put band-aids on a few so they won't snag and tear off too soon, but since we noticed last week what was happening, he only has about 4 left to come off. We'll see if the last transplant has the same effect in the coming weeks. One more thing for us add to our list of stuff we've gotten through!

Thursday I will take Drew in bright and early to have his central line put back in, and also an MRI. The MRI will be for diagnostic purposes, to see where we are at and also for radiation to plan where to treat. Please pray that the summer of hard work against this cancer has paid off, and our MRI looks good! It will be great to have our line back in also. It seems like it would be nice to not have it, but when you are in treatment, it makes life so much easier. We were reminded when we had to go in for lab work Monday and had to do it the old fashioned way. It never gets easier to be calm and try to distract him while they dig for a vein...Then next Monday we'll go in for a trial run of radiation, to get his treatment plan all ready to begin the next Monday, the 26th. On to the next phase! Three down, two to go!

Last post I talked about how happy we were to be home, and all that is bringing us joy. It was all true, but a part of me is still sad. Sad for all the sick children and their families who aren't so happy. With September being Childhood Cancer Awareness month, I feel like I'm bombarded with the journey's of others in this dark world of childhood cancer, and some even right in front of us. Our neighbor in the transplant wing when we left had been there over 12 weeks. She started the week before our FIRST transplant. While they were so polite and happy for us to go home, you could just see it on their faces. It was so unfair, they'd watched us leave twice now, and they still weren't for sure when it would be their turn (they did get released later that week!). I tried to shake it off, to enjoy our success without feeling bad for them, but I couldn't completely. Then, I believe God guided me to 1 Corinthians chapter 13, the chapter on love. "If I have a faith that can move mountains, but do not have love, I am nothing. If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing." We can have all the faith in the world, and endure all the hardships we've had to face physically, but if I didn't love others, literally our neighbor twice this summer, then we have gained nothing through all this. It really challenged me to not try to "shake off" the sadness for them, but acknowledge it as God's love for others in me. I need to not get stuck there, or let it rob me of our joy, but instead I feel I should let it motivate me to pray for her, and all the others, to help whenever I can, and to be kind. Another lesson I hope to never forget from all of this! I have another little girl I've been following, and have even exchanged messages of encouragement with her mother online. She is fighting leukemia, and is another one that causes me to struggle with guilt that things are going so well for us, while others are not enjoying such success in their treatments. So I will do the only thing I can for her, ask you all to please pray for her, she needs the prayers more then we do today! Her name is Ava, and they need a miracle, or God's mercy to end the suffering. She has a page, https://www.facebook.com/teamavabright/, or http://fortheloveofavalee.blogspot.com/.

Here's a picture of Drew's fingers before they started to fall off, Molly (Miss I-never-want-to-wear-clothes) and Drew with their alarm clocks (if you are a mother of little ones and don't have one, check them out!!), and of Josh and I over the weekend. We got a babysitter, and actually went out together! It was so nice.

~Heidi