Brinley went to clinic Thursday for her monthly chemo. She had gained a whole pound in one month! I tried very hard not to let a school girl squeal out as they weighed her. It just means so much more to me than it does to everyone else. I knew her legs were getting thicker!!


We have decided to continue the neurontin (or devil syrum as I like to call it) because this month was "better". She still ended up with some pain last week, but it was not debilitating and she was easily distracted. So although she is still complaining of stomach aches, headaches, knee and hip aches, etc, the neurontin seems to have taken the edge off at least. We will just have to deal with the aggression until we decide it is no longer doing the job. I have had to invent a new time-out for her because she will just chase Jade around with her fist in the air until she hits her, then walk herself to time-out and sit, thinking it was worth a time-out to hit her. Now I give her a spank and put her in a chair facing the wall, and she hates it. Success. I know this sounds mean since it IS a product of a medicine, but we have to live with her and that is what we will do. I told her she can hit the couch instead of one of us if she wants to, so she has options.

We tried the inhaled pentamidine (the antibiotic she had a reaction to last week) instead of IV, but she couldn't tolerate it. She was gagging and crying, so they stopped but decided she got enough to cover her for this month. Next month we will try pre-treating her with benadryl before the pentamidine. Everyone in clinic couldn't believe we went a whole month without a fever, or anything to warrant a visit to clinic.

Our oncologist dropped a bomb on us, we already knew she was moving toward the end of the year, but now it has been pushed up to next month. We will have one more month with her. We were so sad when she told us. She has been with us from day one. She was the one who sat us down to lay out the map of treatment. We really love her and are so sad to see her go. Virginia gets her now :(

*SELFISH MODE ON* Since she had started having her pain issues again last week, I feel like we have already been doing steroids for a week, since she cries so much and is so grouchy. She even wakes up earlier! So I am not up to the task this round. Pshhh, as if I have a choice. Things aren't any harder than they have been this whole almost two years, but I felt much stronger in the beginning. I don't know why I suddenly feel like a weakling with all my strength gone, except that I am just getting pounded and haven't been able to regroup. Mylee is getting harder and has some lungs that just shouldn't be given to babies. Some days I want to shower twice just to have 10 minutes to myself. I was talking to my mom Friday and she could hear all the screaming and chaos in the background, and informed me I have officially been paid back for any grief I put my parents through. So the chaos should stop now right? I'm not one to sugar coat, I'm having a hard time. Keeping it real. *SELFISH MODE OFF*

We are down to FOUR, yes FOUR treatment left!!!!!! It sounds unreal to me, but that's what it is. She will have an LP (chemo in her spine) next month to start the next phase of maintenance. And she will end treatment with an LP in November. I just know the time is going to fly. Brinley has been such a trooper. Through all the struggles we have had some good laughs. Thank goodness for laughter. God has not left us alone and time is moving right along. With His help and a little bit of time, we will get through.

Brinley has been walking around moaning, just feeling miserable. I think she has been nauseous, but it is so hard to tell what is causing the stomach aches. Constipation? Nausea? Indigestion? All side effects of the chemo she is on, so to pinpoint it in a three year old is pretty tough. We are trying to get prevacid approved through the insurance, because I think it really helps but we need to wait until Monday. We are doing our best to keep her comfy and distracted, usually not succeeding. She did get to go swimming with Aunt Nancy and to a pool party Saturday. Those were both successful distractions. Soon this will all just be a memory....

Tonight David put up the tent to sleep in, so he's outside in the yard with Jade and Brinley. Taylor, sadly, has come to age where a comfy bed sounds better that camping out in the yard :(

Some Torres funnies to give you a chuckle:

Taylor (on the way home from a soccer game) to Mom: The ref gave Amber a yellow card today.
Brinley (big smile): I'm so glad her gave her a yellow card. (she must be picturing him handing her a nice yellow "card", birthday card maybe?)

We laughed pretty hard at that.

Another one:

Jade: Mom, can we go to Washington to see Dennis and Dani?

Mom: It's too long of a drive to make this summer.

Jade: Can we just fly on an airplane?

Mom: No, it costs too much money, we don't have enough to pay for all of us to fly.

Jade: (big sigh) Why do you keep giving all of your money to the BANK???

We had a talk about what a bank does :)

On that note, I'm signing off. As long as it ends with a laugh everything feels better somehow.

7 comments:

Anonymous said...

Thank you for the encouraging update and thank you to your oncologist that is leaving she has done an outstanding job! God bless you all and may this week bring some more laughs xoxoxoxoxoxoxoxo love you tons!

Stacy said...

The end is in sight! Maybe that's why things seem harder because you've been doing it so long and the end is coming. Hang in there - you do so many amazing things and you guys are so strong! I love the funny things your kids say - so sweet!

Lidia said...

Thanks so much dear Kristin for keep us update and have same funny moments to share, I am with you abaut discipline, some time we need to put things in order and is not easy!!! I know!!So happy that time is coming short to finish with such a pain every month. I love you for your pacience and have a good sence of humor. Miss you all. Love Lidia

Adria said...

I'm glad to hear Brinley is gaining weight and that the neurontin is helping. You've been at it a long time, it's no wonder that you don't have the energy for it you did when you were operating in crisis mode. I think we go on adrenaline for a long time, and then start to burn out.

Thank goodness you can see the light at the end of the tunnel! We love you guys!

miss N Hanks said...

Hi, I am tired of being anonymous no need to post but would like to know if I actually got a picture on ♥♥ :) xoxoxoxox Hope your monday was good xo

Sole said...

You guys are such good parents! No matter how hard things get, you're always coming up with fun things to do! ONLY 4 treatments! I'm sure time will seem to slow down a little because you're so close to the end, but there's light at the end of the tunnel just hang in there!! I can't wait to see you guys again soon! We all miss you so much! Love ya!

cormorant said...

Hello, over in Britain Brinley is a boys name, and for me a family name, I have an uncle who serverd in WW2 in the intelligence corp, and a cousin, so at one time there were 3 of us called Brinley. When I was registered at birth, my mother was a bit worried about the registrar accepting the name