Hawaii, Christmas, New Year!!

This post is long overdue! To be honest, I wrote a very long post last week and while typing the past line my computer crashed! I was too exhausted to start over.
As a quick recap… We had an amazing Wish trip to Hawaii. Apparently that hotel can be very crowded and not enjoyable during high season, but we hit the perfect week. Sofia felt great the entire trip after a questionable day before departure. Getting to go on that trip with our friends was priceless. Though I am very sad that we had to meet through both of our girls getting cancer, having them in our lives has been such a blessing. And for those who asked, I didn’t get my spa treatment but I did get to paddle board, one night the mommy’s got to go out for a drink alone and Mike and I got away for a lunch. It was a perfect vacation for everyone!
We were happy to come home and enjoy the Christmas season. We made cookies, decorated every room, went out to see the lights, visited a few Santas and listened to Christmas music all day, every day. If you haven’t caught on, we listen to a lot music in our house. We made three special trips to the Hospital to drop off toys for the kids, as we were in the Hospital last December and we know how much those gifts mean. It is very important to us, that Sofia understand the importance of the kindness we have received and the importance of giving back.
We spent Christmas and New Years at home, together! Nothing more that we could ask for.
When we got back from Hawaii both Michael and I came down with a cold but luckily lots of hand washing spared Sofia from getting sick. For the past 6 or 7 weeks Sofia had been on 50% of her daily and weekly oral chemo and her ANC has stayed steady at 1200. Last week we went in for her monthly IV chemo and her nurse decided to bump her once a week oral chemo to 65% and keep her nightly chemo at 50%. We are hoping this slight bump up does not effect her counts too much because we want her on as much chemo as possible without crashing her counts. We will get a blood test next week to see how she is handling everything.
This last appointment was especially good for me because I had the opportunity to sit down with Sofia’s oncologist. The way Lucile Packard works is that we really only see our Nurse Practitioner when we go in for visits. I had a couple of things on my mind so I was really happy to see him. My first question was about Sofia’s Lumbar puncture IT chemo. The “regular” protocol in the US administers Methotrexate into the spinal fluid for Intrathecal Chemo. Sofia is on a study at Stanford where she receives 3 different chemos in her IT. I have been questioning if maybe why this is why she is getting so sick after her LP’s and if maybe we should drop out of the study. He quickly made me feel better, letting me know that this triple chemo is now standard protocol for all Leukemia patients at St. Jude. St. Jude has already proved that this combination of drugs causes less side effects than methotrexate alone and kids receiving the triple have a much lower % of relapse in the spinal fluid. So, we will stay on our study as that is exactly the point of LP’s.
The other thing I wanted to discuss with him was me. Sofia is looking good and feeling good and my nerves are shot! I guess you spend the first year just focusing on your current step and trying to get to the next step. Now that we are in maintenance and we have more freedoms it is all hitting me. If you saw Sofia out on the street you would never know that she is currently fighting to keep the cancer out of her body, but I know and it’s so scary. At night while she sleeps I lay there and think how did this happen to my baby? I try so hard to focus on all of the good from that day and slowly the thoughts of 70% of these kids will get a different life threatening condition because of the chemo. I think about worrying it could come back every day for the rest of her life and it is overwhelming. Than you feel guilty, as there are many parents who have lost their kids who would be happy to live with fear as long as they had their kids. You get the point, it’s consuming my mind. Her Doctor told me that I have the first stages of PTSD (very common for parents) and that it will likely get worse when treatment is over, so I need to start feeling with it sooner than later. The start of 2017 sounds like a great time to start, so that is what I will do.
To end this post on a lighter note I would like to tell you what we have been doing since Christmas. A couple of weeks ago, while watching Carpool Karaoke, Sofia discovered One Direction. Her first words were, can we rewind this. It was instant Love. Now, if she’s awake, she wants to be listening to or watching One Direction. I have seen every video more times than I could possibly count. We all (including Mike) know every word to every song and could probably act out the videos. If you happen to see us in public, we have it on repeat on my phone as background music while we walk. We are 1D all the way! She’s 4 going on 14!!
I hope you all had a Merry Christmas (and Happy Hanukah or anything else you may celebrate). I wish you all an amazing 2017! Our goals are health, mental focus, lots more laughs and quality time with everyone if our lives.
#GoTeamSofa