It's hard to put into words how I'm feeling.
Last night, we were able to give a gift certificate, under our Team Sophia name, to the Child Life Specialist - Carolyn - at the Proton Center. She has been an integral part of the success of Sophia doing radiation therapy, we were overjoyed to bless her. It was really hard to hold it together - very emotional.
She has repeatedly told me how, in just 5 short weeks, Sophia has completely changed how the radiation oncologists view children. I am extremely humbled to be a part of that because I believe it is for the best. Their standard up till now has been to sedate children - for 5 days out of the week, multiple weeks at a time. Because Sophia has done all her treatments without sedation, and handled it smashingly, they have changed their standard operating procedure. And that is wonderful for everyone.
Ironically, what led to me me putting up a fight about not sedating her was my philosophy of trying to be "normal" (as much as we can) through this time. I can't say it came from a very noble place. In fact, I thought I was quite prideful and full of self (and probably was.)
But The Lord uses everything for the good of those who love Him - and He used my Mama Bear instinct to say no - they would not sedate my child. That whole process stinks royally on so many levels, and maybe I was just a little tired of doctors and nurses, who think they know everything, telling me what my child can and cannot do. (See, told you it was prideful).
While that is a miracle, the greater miracle is Sophia. She has significant radiation burns around her eye, but we have slathered on the Aquaphor and done eye cream/drops multiple times a day. And other than needing a few more naps a week, she has been a normal 4 year old. She hasn't gotten chemo but one week out of the last 5, and she has been on an appetite stimulant - which has worked GREAT for her. She'd lost nearly 9 lbs in 15 weeks and since being on the stimulant, she has gained all put a few ounces back in 4.
She is a remarkable girl. I told a mother, whose son started radiation Monday, she would be amazed at how strong her child is, if she would let him. I'm so glad I trusted The Lord to see Sophia through - He uses her natural personality and gives her supernatural strength.
She rides a little trike all around the Proton Center - it is quite a sight. She puts a smile on everyone's face, through her outfits (always pink and complete with sparkly shoes and hats), riding as fast as she can around the fountain in the middle of the lobby, and her sunny disposition.
She is remarkable.
I am humbled, continually, to be her mother and be part of this process. I still haven't decided that I LIKE this journey (which is understandable, I think) but I am so grateful to watch her - and my family - grow.
We have a party planned this evening after her treatment - she gets to ring the gong (most of the week she kept saying bong, many were confused), get a prize (and a few presents) and eat cake. There are going to be a whole slew of people coming to see her, including family and very close friends.
It will be remarkable.
I'm quite sure I will be bawling my eyes out. As I said, it was very difficult to hold it together last night. I didn't think this would be so emotional, but it is quite a milestone. We are halfway through this protocol. The light at the end of the tunnel is getting stronger. We still have a long way to go, but we can see the other side. Hope continues to increase, as does our faith, courage and strength.
Go God and Team Sophia!