The sitter arrived to care for Aiden, my almost 2 year old that's not allowed in group care yet due to his immune disorder. We said our goodbyes and my mom picked us up for the journey at 6:00am. I had packed two overnight bags (one for Sophie, one for myself) just in the event that we had to have a procedure of some sort done and had to stay over night. Luckily we did not, but it's always good to be prepared. So, we arrived at Texas Children's around 7:15am and got coffee and Sophie had some berries in the car and a muffin once we got there. She was in relatively good spirits, but my stomach was in knots! I couldn't eat and my stomach was doing flip-flops the whole hour we waited for the nurse to call us back.
The hardest part about being there was seeing the really sick kids. Sophie's sick too, but some of these little angels could barely sit up, they felt so bad. My heart ached for the little 15 month old whose mom was there in her business suit and he had to wear a helmet for fear he might fall. He was precious. Then, there were the teenagers, so awkward and beautiful, peering over their masks from under wigs and hand made hats. I wish there was a cure for these diseases. These kids absolutely don't deserve to live this way, struggling to breathe, constantly in pain, or on crutches...Such hopes and potential... I just desperately hope that they all see adulthood. It truly broke my heart.
I really have a heart for kids. When I was a single girl, I thought I might never have kids, but now I can't imagine my life without them. After Aiden's severe prematurity, cerebral palsy, immune issues and now with Sophie's LCH, I still wouldn't trade either one of them for anything in the world. I would take on every last ache and pain she feels now away if I could. I would wave my wand and relieve every pain, frustration or disappointment they will ever feel, if it meant that they could live longer and happier lives. I guess that's just the sign that I'm supposed to be a mom. I used to think that money was more important than things, but these two "things", Aiden & Sophie, have changed who I am to the core. To think that Sophie might have to suffer like one of the kids in the waiting room, I just wish I could bear that burden for her and she could recover anyway. Kind of like chemo surrogacy! What a concept... But, for now I will just be there, holding her hand, easing her frustration and trying to make sure she's happy, content, and as normal as possible given the circumstances we've found ourselves in.
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| Sophie and me as we waited to be called back to see the Oncologist. |
After playing a game and watching Sophie enjoy a Star Wars book they had in the waiting room, we realized it had been a while. We all started to look around and I started to get a little antsy about the appointment. What would he say? Is it possible that she has something else? What is the treatment? How bad will it be? How long? Will she lose her beautiful hair? Will she have to have another surgery? After taking a deep breath and praying for peace, I calmed down and leaned over to her and said, as much to Sophie as to myself, "It's gonna be okay, baby." About that time, Sophie went over to the computers with her dad and her pager went off. We went to the front of the room and waited until we were escorted back to the room and Sophie's vitals were taken and everything was status quo, and then the doctor walked in.
A cordial man in his fifties, he started by talking about what has happened to Sophie so far, he asked a lot of questions and we talked about her symptoms in detail. He said that chemo was the best option considering the entire picture of what symptoms she has.... and then the most important thing... He said this treatment plan they wanted to start on her was 90% effective! I wanted to jump to my feet and yell HALLELUJAH! The doctor then explained the detail of what type of chemotherapy drugs they will use and that it's a lower dose than used to treat cancer so she may have less discomfort and would likely not lose all of her hair. He then said that it will be a 12 month course, with 6 weeks every week and then a reassessment period and then hopefully every three weeks for the remainder of the year time frame. She will be monitored closely and have things re-adjusted as need be. He explained the side effects but then also reminded us that this would likely send her into remission to which we all smiled.
I sucked back tears and looked at my mom, then to Sophie's dad and then to Sophie who's face was still in shock I think as she played with the stuffed dog she's had since she was two. The doctor even asked what the dog's name was. She said, "This is Puppy". He sat on the exam table next to Sophie and reassured her that it was going to be okay as his associate walked in and he removed her stitches. He explained that they would both be monitoring her closely and then gave us his card with his direct information and his email address. I guess when there are 300 new cases worldwide every year, you can afford to have your patients reach you. He seemed like a nice enough guy, and they both seemed highly intelligent and personable.
After the appointment, Gerald went back to work and Sophie got her second wind after we grabbed a quick bite to eat. We went by Target and picked up a few new things for Sophie for school and I just sank. After the adrenaline pumping through my veins the last few days I really needed a nap. After getting Sophie settled in, I laid down for a little bit and felt 110% better. I was thankful that my mom had offered to run to the store real quick for milk and when she came back I was revived and rejuvenated and she went home and got some much needed rest herself.
So, as I live with little sleep and choke back the constant lump in my throat, I wonder how long this fear and sadness will linger before I find peace with the whole situation. I am writing this blog to help me find some sort of outlet to express my feelings, and as I read and edit my posts I see why it is so important for me to write when I'm going through the tough stuff. It really helps you find your strength and I HIGHLY recommend it!
In closing tonight, as I ponder the future, I wonder about a lot of things... I wonder about what chemo will really be like. I wonder if the doctors are downplaying how bad this is going to suck just because to them... well to them they see it all the time. I need to go to bed, but for now I am going to stop and pray. And...remember WHOSE we are!
I pray Psalm 147:3-5 tonight...
Dear God, Tonight, I am reminded that our Father....
He heals the brokenhearted and binds up their wounds.
He determines the number of the stars and calls them each by name.
Great is our Lord and mighty in power; his understanding has no limit.
Help reveal the answers and your understanding to the doctors and the nurses that will watch over Sophie this year. Show me your grace and your peace as I assist her and act as the sidekick to the hero she already is with your strength to back her up. O Lord, our comforter and our strength.
Amen
I love the blog!
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