September 2017

It's been a busy month!!
After last treatment we were gearing up for our first day of school. Sofia was excited and a tiny bit nervous because she didn't know anyone in her class. Because Sofia doesn't turn five until October she's in Junior Kindergarten this year. Like always, she ran right in without any hesitation. She's only there half days but it's 5 days a week. It was so strange for me to not have her at home so many days in a row! The first week went great and than.... well she made it 5 days and got sick. It was just a cold but she did get a fever so we had to go to the ER. After 7 hours we made it home and had her rest for the next 5 days as we had an important trip coming up! Of course, Noni caught it 2 days later so we spent those very hot days locked in the house. Luckily everyone felt better by Labor Day so we were able to leave the next day for Disneyland! It was Noni's first trip and we had so much fun!! Sofia is an adrenaline junkie and Noni just waved and pretended to scare everyone. It was a perfect getaway for the kids. I love that she still lights up every time she sees a Princess! It was also extra special because Grandma surprised us at the airport gate. No one thought she could do Disneyland so soon after her surgery but she didn't want to miss Noni's first time. It was a special trip.

Yesterday I took Sofia in for her monthly Vincristine chemo and unfortunately her port was again not giving us a blood return. So another marathon visit began. We ordered the TPA and waited an hour, administered the TPA and waited an hour, didn't work so we waited another hour! After all that, still no blood return. We decided we had to make the step and put an IV in her hand. We numbed her hand, heated her hand and had the most amazing nurses with us. But Sofia was a wreck at just the idea. We had to pin her down and listen to blood curdling screaming but it went right in. It didn't even hurt, it was just the idea of it. After all that we still had to get labs and wait for chemo to be ordered! But the big question remained, what's wrong with her port?
Finally after 6.5 hours we were done! And yes, taking the IV out went just as bad, bust mostly because of the dressing on top of the IV. Just as we were pulling out of LPCH they called to tell us to be back the next morning for a line study. Basically, detailed X-rays and contrast in her port central line. So home, eat, bath, sleep and back to the hospital.
Another traumatic morning of being accessed but we have an answer. There is a tiny clog at the end of the line. The thing is, it still works perfectly to put things in, we just can't pull back blood. So do we take out the port and just continue with iv in her hand, potentially collapsing those veins because of the toxicity of the chemo. Or do we use the port to give the chemo and get an extra poke to pull labs from her arm? We will meet with her team to discuss.
So after 5 days at school and 2 weeks off school, we will try again tomorrow! Praying she makes it a little bit longer without getting sick!!
Thank you all for your thought and prayers!