Life is never dull around this house...that's for sure. Sometimes, it just seems that we can never fully get ahead of the "game." Do you ever feel that way? Just when we get Claudia sleeping through the night (something we haven't experienced for almost 1 1/2 YEARS)...life gets interrupted and we start all over again. One step forward, two back. Anyhow, let me catch you up-to-date...
Chemo (2 times ago - April 20th) went well. However, we were told by the doctors that the side effects would probably begin to be a little more intense after this week (it just takes that long for her little body to begin wearing down)...and they were. It started out with constipation. This is always a tough one to deal with. She can't quite communicate well enough to tell us exactly what the symptoms are she's feeling, but she would begin crying...loud, and point to her stomach. We realized after several days that we hadn't changed a dirty diaper so we put two-and-two together. If you've ever had this problem, you know how painful this can be. We were finally able to "get things moving" after a prescription laxative. She's also begun to act a little more tired...just laying on the couch or wanting to be held. My aching mother's heart reminds me this isn't how a two year old should be spending her day.
To add drama (like we need anymore!), last Monday she woke up with a 102 degree temperature. We have strict orders to call our dr. (specialist/onocologist) if her temp. ever exceeds 101, so after several phone calls and a rising temp (almost 104 degrees!) we were on our way to our local pediatrician. He couldn't seem to find any "sick" symptoms (like runny nose, red throat/ears, etc. - which means she could have had an internal infection, like in her blood or somewhere even more serious) so he sent us over to the local hospital for tests...lots of them. Three different blood tests, 2 X-rays and urine testing, to be exact. I'll spare you most of the details, but let's just say this was the beginning of a nightmare. We tried telling him that we would prefer to drive to Lutheran Hospital in Ft. Wayne because they don't "do" pediatric ports at KCH...he insisted they did. So, by the time we got over to the hospital they had lost our, faxed over, paperwork. This resulted in a 1 1/2 hour wait. When it was finally time to draw blood from her port, we were informed that there was not a single person in the entire hospital qualified to draw blood from a pediatric port. Hmmm... We went ahead and got her x-rays done. Still, nobody to draw blood from her port, so they tried getting blood from her arm. After several unsuccessful pokes they decided they needed to find someone who could access her port. Finally, after several (hours!) and phone calls later, we had a nurse that had been trained in an IV ward (25 years ago) and thought she could do it. Again, I'll spare you the details, but it was a long...did I say LONG?!....long process, but we got it done. The blood work came back ok...still puzzling to the doctors, but to be safe (because she is so high risk) they decided to give her an antibiotic shot (with 5 different antibiotics in it). And because they did not leave her port in, this meant ANOTHER POKE for an exhausted, hysterically crying little girl. I guess this is a pretty serious shot to get because she had to go up to the ICU where they had to monitor her vitals as she received the shot in her leg. Of course, she cried hysterically and at the end of the day, I'm still not sure who cried more...her or ME!!! I was so frustrated, angry, heartbroken... We had left to see the dr. at 3:30pm and were finally leaving for home at 10:30pm! What a day. She continued to have a temp the next day (Tues.) but woke up Wed. perfectly fine...no temp, nothing. This meant we were off to Indy for chemo on Thurs. Our dr. (in Indy) was able to determine from further blood testing that she had caught some kind of viral infection (meaning the shot was useless...oh well, better to be safe than sorry, I guess).
Chemo (April 27th) was also uneventful...everything went well. However, AGAIN, she woke up with a temp this past Friday (102 degrees) which lasted until this morning (Sunday). She seems to be ok today, but hasn't had a dirty diaper yet. I hope this isn't the start of another ordeal with constipation. Please pray. Who knows what tomorrow will hold. I just keep telling myself...one day at a time.
The last time we were in Indy, we took a documentary of photos so you can see what our Thursdays getting chemo are like...
Every week before getting chemo, she gets weighed...
She used to cry hysterically when they did this, now she just crawls right up in the chair and pulls her pant leg up. She's such a big girl!
A nurse comes to our house EVERY Wed. to draw blood to check her counts. On weeks we come to Indy, she leaves the needle in, which saves us a poke when we come for chemo the next day.
After checking her vitals, the nurse draws blood for more testing. When she's just "flushing" her port, she lets Claudia help push the syringe...she LOVES this. We have such a WONDERFUL nurse (Cindy). She is soooo good with kids.
Getting one of her chemo drugs (she gets one real quick...and one over a 2 hr.period).
Look how good she is...she just watches!!!
And now she has a 2 hour infusion of chemo...so we wait, and watch videos, and play, and take wagon rides, and...
Her FAVORITE thing to do while waiting is playing with the doll house. As soon as she gets hooked up we run, literally, over to it. It was handmade by a man who spent his whole married life making it, and everything in it (as a hobby) for his wife...when she died, he donated it. It really is neat. This picture doesn't show it's grand size and very intricate detail too well.
And we're all done! She always gets a fun bandaid that she's very proud of!
"Can you tell I'm happy to be in the car and on my way home?!?! I'm so brave. Mommy tells me I'm such a fighter and a pretty special girl."
So there you have it...a day in the life of Claudia. Just thought you may what to see what she goes though every Thur. She takes it so well. I am so proud of my little trooper. She actually gets excited when we walk in the hospital...she has no clue. So my prayer is that God will heal her of this tumor and that she will never have to emotionally understand this "journey" she is having to bear. She is such a special little girl.
In closing, I just had to share these last photos & story with you. We had a warm spell last week and got to be outdoors a lot (what a blessing...she LOVES being outside!!!) As I was raking some leaves, she wandered out front and as I came around the corner this is what I saw....
...ALL OF MY BEAUTIFUL TULIPS WERE GONE!!!!! She had gotten to every single one of them! But is was so neat because, as I picked up one of the blooms and held it in my hand, I saw an open tulip, a side of these flowers that I had never seen before...it was so beautiful!!!!
