Sunday, June 30, 2013

Make A Wish

This was a trip of a lifetime!!! I cannot believe the amazing people we met and they experiences we had. The red eye flights were a little scary but the kids did ok. I was newly pregnant and sick so it was a little rough for me. Lukcily, they allowed Tavia to join us and that was a lifesaver!! We couldn't have done it without her. We spent each day at one of the parks and completely wore ourselves out. Give Kids the World was unreal. I can't put into words how amazing it was. I know there will never be another place like it. The kids were in heaven along with the rest of us.

The rides were amazing. The weather wasn't too bad. The rain was actually a blessing because it cooled the temp down which helped with my nausea. I was nervous that Taleah would end up with a fever or something but that didn't happen. Waiting in shorter lines, eating yummy food and playing all day was more than we could have asked for!!

Six days was a long time but went by quickly. The flight home was pretty good. The kids fell asleep and slept about 75% of the way home. My seat was upgraded to first class!!! Tavia sat with Scott and the kids. I was pretty sick so it was a huge blessing. I don't know why the attendant felt like doing that for me, but it was greatly appreciated. We did get to the parking garage to a dead car. I left a light on so we couldn't open any doors other than the drivers side. We had no way of backing it out to jump it.. it was interesting. Luckily, trevy lives in Vegas and was able to come and save the day. It did delay us getting home by 2 hours (which resulted in a 3am arrival). That was the only thing that didn't go our way!! Not bad. It was SO amazing and I hope it is something that the kids can remember by pictures and the videos we took. Thank you Make-A-Wish!!

It has been a busy 6 months. I am WAY behind on this blog. Taleah has had 2 treatments at PCMC along with her monthly CBCs and visit with Dr. Marsden. Her ANC has stayed between 700-1300. That is a great range so we haven't messed with her oral chemo dose. She isn't on a full dose which makes me kind of nervous, but there is nothing we can do about it. Taleah has stayed involved in pre-school, gymnastics, dance, cheer and tumbling. She LOVES all of it! Keeps us all busy. I know the germs aren't the best, but we have to weigh what is best for her and her recovery. The trips to PCMC have been pretty much the same. She gets major anxiety about the sedation portion of the visit. It includes being sedated and the lumbar puncture to test the spinal fluid and do intrathecal chemo. I think it is the actual feeling of the sedation and then the way she feels afterward. She feels pretty miserable and throws up a lot. The past few times they have had some difficulty with her LP. It's almost as if she is so tense that they can't find an open space in the spine for the needle. They have had to poke multiple times in order to get the right place and finish the procedure. It does make her back very sore. This last time was extremely nerve wracking because if they couldn't get it (which had happened once before), then it would completely mess with the rest of her treatment "schedule". I was on the verge of tears but luckily they were able to complete it with some difficulty. This trip in particular we were able to use angel flight and it was great!!! It saved some time and really cut the trip home a lot shorter. They happen to be doing a news story on Angel Flight so they interviewed Taleah and I for the story. The flight home was a little rough, only because Taleah was so sick. It was an amazing experience and I can't believe there are so many good people in the world!!

The plan is to go to PCMC in August to have her last treatment and have her port removed as well. Everything will be done in the OR. I am so excited to have the port out because it is less risk for infection. She will then continue oral chemo until October 31st. Then she will be officially done!!! We will then have a huge party!!! She will still have lots of follow up visits and CBC for a long time. I am proud of her progress so far. She has been one tough girl. There has been so much heartache in the cancer world lately and I try and stay positive. These kids are true fighters and such an inspiration.