There is a family on my ALL e-mail list who is in need of your prayers. The Riggs family have a little girl named Abby. She is 4 years old and has ALL. She has had a very rough time with the chemo and they recently found out she has a genetic marker that significantly lowers her chances of survival - down to 20%. She has just started DI, the same phase that Brinley is in, and they don't know if she will survive this difficult phase. She is in day 3 and has already been hospitalized to drain spinal fluid from her brain. She is miserable right now and the more prayers the better. You can learn more about her at http://www.riggsfamilyblog.com/2009/01/about-abby.html.
We went to clinic today, we are through with week one! There were a couple of rough days in the middle, but all in all, it's been a pretty good week. It has certainly been bearable, and now Brinley is off steroids for a week. Her counts are dropping, her ANC is at 900, but they expect it to continue going down this week, so we are going to be extra cautious taking her anywhere, we know how counts can plummet without us even knowing it, and I found out today that the steroids actually raise the white blood count, but the nurse said it actually doesn't mean her immune system is okay, it's kind of like a false sense of security. So she warned us to be careful when Brin is on steroids, even if her ANC is quite high.
We brought Jade to clinic so she could see what goes on in that mysterious place....she quite liked all the crafts and toys. It was funny when the doctor came in because at one point we had all 4 of us, the doc, and a medical student in the little room at once. Brinley was in such a good mood she was just running around bumping into all of our legs, it reminded me of a pinball machine with Brinley as the ball. Needless to say the doctor was very pleased to see Brinley so happy, and us too! She stayed the same weight wise, at least she didn't go down. She is still eating fine. Seven days down with only a couple bumps, 53 to go for DI!
Although it was good for us today, there was a girl there that made me soooo sad. She looked a little older than Taylor, maybe 12 or 13, and she came in on a wheelchair. Her legs were so skinny and I guessed she hadn't been able to walk for a while. She looked so sick. They got her a bed for the infusion room and she just laid there getting her chemo. It made me so sad for the things these poor kids go through. I just wanted to somehow take away her pain and let her have a normal life. Have you ever felt so overwhelmed by someone's pain you just wanted to take them in your arms and somehow transfer it from them to you? That was how I felt. I imagined my Taylor going through that during this time of her life. I try not to dwell too hard on why this happens to such young people, but times like that make me wonder why such innocent children have to endure so much pain. It would be heartbreaking to work there every day. I take my hat off to all those who have to see that all day, a couple hours was enough for me.
We went to clinic today for some more chemo, she got the PEG shot, this is only the second time she has had this one. It's a shot in the leg, then you have to wait an hour after at the hospital to make sure she doesn't have an allergic reaction to it. I guess it is more common to react to it AFTER having received the first dose and the reaction is pretty violent, so they want it to happen at the hospital if it happens. Luckily she was fine. It was quite frustrating though because we were there for 3 hours, it always seems to take so long to do everything. We wait around for the pharmacy for at least an hour it seems every visit. I try to be patient, they really are great, but we just want to get out of there sometimes.
She'll get that shot one more time, I believe. She was maaaaaad! The nurse said it burns pretty bad going in, and it was a lot of fluid to push in. I always feel so bad when my kids get shots, even with the numbing cream, she screamed to high heaven! She has been telling everyone several times today "shot, doctor, leg, owies!" with a little frown on her face for added drama. She's good at adding dramatic faces, it's funny.
She's looking sicker every day to me, her eyes are getting shadows under them and she looks so little and skinny. She has been pretty happy though and her counts are good, she's a trooper. She woke up last night once, I am hoping it was a fluke and won't be a repeat of induction. We are still doing fine and are trying not to feel frustrated because we know things could be much worse (and may take a turn that way easily). Back to clinic on Thursday for another treatment...
This was last Thursday at clinic, just wanted to take some pics of a typical visit to clinic. Starting with the weight, height and vitals, I just thought she looks so tiny an cute doing all this stuff by herself!
Once in our room, it's play time with Daddy.....
Dr. Druzgal examining her, our favorite oncologist there....I should have had her turn around and smile....
She got to pick a treasure from the treasure box, she's been spoiled at clinic, they give out some serious treasures, no stickers there!
Getting one of the chemo meds through her line.
Getting another chemo med. Usually we go to the infusion room, but this time they must have not needed our room because they let us stay in there. Much nicer.
After the IV chemo, we head downstairs to the RTU for the LP (chemo in her spine) and do some more waiting, luckily they have good toys there!
We skipped taking pics of the sedation, it's not a pretty sight watching them put her to sleep, but here's afterwards in recovery, she had fasted all morning and was hungry! This was the happiest she has EVER been after sedation, glad we had the camera! The nurse next to her watches her vitals for a while, then we are free to go!
Better late than never, here are the few pics we got when our camera would cooperate from the Christmas party I wrote about. Tons of people were there!
As you can see Brinley wasn't feeling very well that night, pretty typical look on day 3 after the chemo, we weren't at the party for long!
On the way out we ran into Santa again, he was so great, the kids loved him!
Later that night she was in the ER with a fever. Poor baby!
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