Oncologist Tomorrow and Weekend Recap!

This Friday and this weekend were filled with more sickness unfortunately. Both of the kids had fever all weekend, and I was just praying like hell that nobody ended up in the ER. Both the kids had to go to the doctor on Friday. Aiden with a sinus infection and Sophie called me because she had to go home from school sick. Her headache hurt so bad, she just couldn't take it anymore. It was a hectic day Friday, but once everyone started on their antibiotics, it seemed like they were feeling a little bit better. Sophie is still SO tired, though.

Sophie felt well enough to go to my brother's niece's horse show on Saturday, where she was just in awe of the goings on around her. She LOVES horses. I mean, this girl is borderline obsessed. An example of what I hear all day long is, mom do you know which breed is the one that they use in snowy weather that's able to haul heavy loads?" I say, "uh, no", to which she says, "it's the MORGAN horse" (in her sarcastic tone) and then she giggles with the laugh that is uniquely hers. I was happy to take her, though I was on guard for how long she'd be able to stay out.

Sophie. she was so overwhelmed and excited. She said, "Mom, look at EVERYTHING!"

Sophie and my brother's niece (on the horse) and Benny the horse.

Sophie and my niece outside the saddle shop.

We left before my brother's niece finished her round because Sophie's cheeks were getting really red, and that's usually a sign that her temperature has gone up again. She was crankier by the minute, and I knew that it would be time to go ahead and go home. Not to mention, Aiden had been so sick the night before, it was time to go get him so my mom didn't have to sit with my sick kiddo any longer. So, we left the horse show. In the car, I asked Sophie what she thought about the horse show. She said, "I was moved." It was so sweet.

Later that afternoon, Adam came into town. It was so great to see him. He is such a wonderful man. He never minds chipping in and he lets me relax and even cry when I need to. It's awesome to have that kind of support. We got fajitas for dinner and we took Sophie (once she collected herself a bit from the horse show) over to the store and she got a new DS game. She was so excited because now she'd have something to do while waiting in the doctor's offices. I know she's frustrated... So am I...

Anyway, that evening after dinner, we were playing around with Aiden, and I noticed something behind his ear. It was a small bump about 1cm. It was either a cyst, a swollen lymph node or something. I am sure it's nothing, but when you've been through an LCH diagnosis, it's no small thing when you notice a cyst on another child's head. Here is a photo of what it looked like. I am so glad I took the picture. I didn't have the foresight to do this with Sophie, though I wish I had...

There's the bump. About 1cm in length/width... I am SO calling the doctor on Monday!

Speaking of LCH, we are going to see the oncologists to get Sophie's results and to follow up with them tomorrow. She's nervous and the time change hasn't helped (going to bed an hour early is never an easy adjustment). She said, "Mom, are they going to stick me?" I nervously replied, "I don't think so, I surely hope not!" My mom and my ex-husband are going to go with us. It will be good to have reinforcements there, but I have no idea what they're going to say. She's got extreme fatigue and fever daily (low grade) as well as severe headaches and weight gain. The neurologist has recommended a migraine medicine for her, and we're working up to her dose over a weeks time, but this is no easy task. Seriously... I am worried sick. I am prayerfully optimistic that they will have some answers tonight. Sophie asked me for more water tonight before she laid down to sleep. She's never this thirsty. I worry that Diabetes Insipidus is setting in... Scary how a kid asking for another cup of water at bedtime could scare you, but that's the fear of every LCH mom, I think. Her pituitary tested normally, but the onset of DI can be sudden, from what I've heard. Sigh...

On another (more positive) note, I have given up chocolate for lent.... That's right, people, ME! I have given up chocolate and am trying so hard to stay focused. I am tempted every day but I know that it's what is best and will be an extremely teachable thing for me because I had become so accustomed to having a piece of chocolate here, an M&M there... It was sick really. And, now that I have given up chocolate, I may be a little cranky now, but it's going to be okay. It's the least I can do given what Jesus did for us on the cross. This Lenten sacrifice (albeit minor) is a great example to me of what Jesus went through as he was tempted during his 40 days in the dessert.

Additionally, as I contemplate what we're facing, I'm repeating words of comfort again... Tonight, I will pray a Psalm that I have prayed continually for years now.

Psalm 23 NIV
A psalm of David.
 ¹ The LORD is my shepherd, I lack nothing.
 ² He makes me lie down in green pastures,
he leads me beside quiet waters,
 ³ he refreshes my soul.
He guides me along the right paths
   for his name’s sake.
⁴ Even though I walk
   through the darkest valley,
I will fear no evil,
   for you are with me;
your rod and your staff,
   they comfort me.
 ⁵ You prepare a table before me
   in the presence of my enemies.
You anoint my head with oil;
   my cup overflows.
⁶ Surely your goodness and love will follow me
   all the days of my life,
and I will dwell in the house of the LORD
   forever.

God, I know you can hear the cries of my heart as I worry about my children. I know your angels are protecting them and that You will see us through everything. I just know you can see into my heart through my tears and anxiety about the future. Tonight, I want to lift up all the other Histio warriors that are fighting this disease. I want to lift up their families to you tonight as they rifle through bills or cry in each others arms about the unknown that lies ahead. This is a whirlwind of emotion I wouldn't wish on anyone. I know you will help me find the strength to get through this, you've already given it to me, I just have to lay worry aside and grab hold of the tools and the unconditional gift of grace that you've given me, Lord...

I also want to lift up the families of those who perished or are displaced due to the earthquake and tsunami in Japan over the weekend. Help them to see your presence in their lives, Lord. And, help aid reach them quickly and with no strings attached. Just like your grace.

In your Son's precious and Holy name, Amen.

Goodnight friends,
J