Perspective

3 days ago we had family/Kayman’s 9 month pics scheduled for 8am. I was determined to have all of our outfits coordinated way in advance since I have waited until the last minute for all of our other sessions, so several weeks ago I bought Kayman’s outfit. What I didn’t do was make sure it fit. I set it out a couple days before and asked Mika to try it on her since she wasn’t having it before I left for work. Of course it was too big. Needless to say I went back to square one and started hitting every store to find something. I laid everything out, including Avery’s new collar:) the night before trying to make the morning of as seamless as possible. We got out the door in time (rarely happens with me in tow) and we were ready. “We” as in Alan and I...Kayman didn’t get the memo that family pictures is a time we should smile and act like we are enjoying ourselves. Lately she has been very clingy to me, so Alan and I planned that when our photographer was taking pics of her by herself I would leave the area and let him help because if she sees me she wants to be held. We did the family portion first and she didn’t smile once, but she also didn’t cry. Then came time for her to be solo. Whoa Nelly...she was pissed! She screamed and then she screamed some more and that was a wrap. I wasn’t a happy camper either at that point. We get in the car and I am all “FML.” Alan, my rational better half, is saying at least we have a baby that we can take family pics with and it is not that big of a deal. Of course I know he is right but I decide to pout and be negative Nancy for awhile. I know I am over reacting. And so does Alan and my Mom when I called her to tell her Kayman didn’t smile once. And then I read this post by another Mom on FB: “We've been home for two weeks now but it hasn't felt like it because of all the clinic appointments. I pretty much melted down Tuesday night by bedtime. Between three CMH appointments in 6 days and the stress of an impending MRI, I was done for. Thankfully we Adele got good results back on her MRI. Everything was stable, her primary tumor measured .1 cm smaller but tumors are considered stable unless they have a certain percentage of growth or shrinking. The lesions on her spine haven't changed. The best news was that the enhancement of her primary tumor has greatly decreased. A tumor enhances or shows up more on an MRI when it has lots of blood flow. As that blood flow decreases, the tumor is less active or even dying and it enhances less. Her doctors are very hesitant to say her tumor is dead but they have said it could be. We met with the radiation oncologist and thankfully didn't learn anything new. When we met with the transplant doc it was like a horror movie, bad statistics chased by scary side effects. All kinds of new information that we hadn't thought about before. I really expected the radiation meeting to go the same. The radiation oncologist was amazing. She clearly had read Adele's files, she knew all of her history, she even knew the big kids names and ages. Peter had to work so I put the phone on speaker and she even moved the phone closer to her so Peter could hear better. She told us all the same things, that spinal radiation could affect her spine bone growth, she will definitely have cognitive issues, she could have thyroid or pituitary gland issues, and she might continue to have low blood counts. We know from past experience that Adele has exceeded all expectations so we hope and pray that the radiation fallout will be minimal. Kids under 3 can only get a certain dose of radiation, kids over 3 get a higher dose, one concern is that the lower dose isn't as effective as the higher dose. The radiation doc did say there isn't any statistics to really show one way or the other the difference in the higher dose vs. the lower dose. She will get radiation every day for about 6 weeks. We requested the OKC proton radiation center to get the more specifically targeted radiation vs. the more spread out standard radiation. We now wait to hear from her doctor that the OKC center has accepted Adele and a start date. We anticipate starting in a week or so. She will get complete brain and spine radiation as well as extra boosts of radiation to her primary tumor site. The radiation center will make a special mask that molds to her head to keep it in exactly the same position every time. She has to be sedated every time so that she stays still. So she will be sedated 5 days a week for 6 weeks. The actual radiation only takes a few minutes but the set up and sedation will take an hour or two. We don't know yet where we will stay in OKC, I did ask the CMH social worker to check out options for us. Everything has always worked itself out, I have faith that this will work out as well. I was pretty terrified that we would get bad MRI results, I'm so thankful that they were good. I get so much hope from all of you and your positivity. Thank you. Adele does need a platelet transfusion tomorrow, she gets lab work drawn twice a week to keep track of her blood counts. She will go to Wesley hospital here in Wichita for the transfusion. I can't even remember the exact count but Adele has had between 30 and 40 transfusions of red blood cells and/or platelets. We would like to have a blood drive in honor of Adele at some point because we are so thankful to everyone who donates blood. Please pray that Adele continues to do well, that her appetite continues to improve and that radiation is the final one two punch we need to knock this cancer out for good. Fr. Kapaun, pray for Adele. Immaculate Heart of Mary pray for Adele.” I made a big deal about Kayman not smiling at family pics. Not my most proud parenting moment. This is a story I have been following for some time. This sweet girl is a best friend of mine’s friend’s daughter from her hometown. I read this post to Alan this morning and I asked, “Can you imagine?” I can’t and I pray to God we never have to know what these parents and this sweet innocent child is having to endure along with the many other families facing similar struggles. My Mom knows exactly what this family is going through and I know there is not a day that goes by that she doesn’t think about her sweet baby girl she lost 37 years ago. That is a big dose of putting things in perspective. That is the last time I will complain about family pics not going as planned. Thank you God for our healthy and happy baby girl.