Trust is earned, not given

I realize that I haven't given a recent update on Lily. I have been extra worried about her for the last 2 weeks and that makes me worry even more. I keep thinking that we are going to hear bad news and end up staying at the exclusive, invite only hotel, St Lukes Downtown. Last Friday her neutrophils were at 750 which is the lowest number she can have and still get chemo, so we did our 2nd round of chemo. She handles it pretty well especially if I give her Zofran (anti-nausea) and Tylenol before bed. Its actually when she gets her best sleep. Its been 7 days since chemo and she has a pretty good appetite, and is mostly happy and energetic but there's just something there. I can see it in her eyes that shes is uncomfortable and exhausted. I keep a thermometer basically in my hand and check her temperature all the time and no fever thus far.

Since our first initial diagnosis we really have gotten nothing but good news up until starting this phase. I know that this is a pretty intense treatment phase getting 2 chemos at the same time. So far it seems we get chemo, check counts after 10 days, shes neutropenic, so we wait 4 days and then she is better, barely, to do chemo again. Trust me I'm trying to keep a hopeful mind but its hard when her eyes look so sad. We go back in Monday and we will know more then. The plan is to have more chemo so we will pray that her counts are up!

So there is something that I have discovered through all this. Its about Makinlee. When she was born I felt so close to her in a mothers way. Lily was an easy baby and would let anyone feed her and hold her and would snuggle everyone, but Kinners only wanted me. She really didn't want other people trying to take care of her much at all. It was like that until Lily went in the hospital and then I honestly only saw her like 4 or 5 times the whole 8 days, and only for an hour or two each time. I missed her so much and I had so much guilt that I had just dumped her off on other people for a whole week but I knew Lily needed me most. What seemed like a month in the hospital to me must have seemed like a year for Kinners because when we finally did get home she didn't want anything to do with me. Honestly she would cry if I tried to put her to bed but then Jake would and she would go right to sleep. Its like one day we are home and and everything is fine and then next time we are home she doesn't trust me at all. It has taken me up until about 2-3 weeks ago to gain that trust back, for her to really let me back in. Especially this week, is like the first time since, I don't even remember when, that she snuggled me without being asleep. That she hugged me, and called for me, and reached for me. As a mom I expected there would be times when I would feel closer to my girls than others but I never expected to have to earn back an infants trust. It has been an unexpected lesson for me. Even in my most precious relationships, my trust is earned not given.

At this point this cancer journey is far far from over. That makes it very hard to predict, or plan what life will be like in the future. I have no doubt that Lily will kick Leukemia's butt, but what I don't know is at what cost and sacrifices it will take. We have to take everything day by day, hour by hour. We cant make a lot of plans a head of time and that's okay. We are learning, growing, and changing as this process goes on. We still appreciate all the love and support that we get from each of you. its what gets us through, and we feel lucky to have such a great family and community.

Photos courtesy of Tina Weeks, OSM Photography