The next day the pump and tubing arrived bright and early. As I unpacked the box, I noticed that everything was in the box, except for the y-connectors. OOPS! Ryan had never learned the new pump so he didn't know that this new pump had different parts to it. He felt so bad! He found a medical supply store in Meridian (close to Boise) that would gift me a couple y-connectors to see me through the weekend. I got the y-tubing and tried for 4 hours to make it work, but the pump kept giving me the error "down occlusion"; by then I was so frustrated not only because I couldn't get the pump to work, but by then Kass was now dry heaving from throwing up so much. When I called the clinic they informed that for some reason the new pump didn't take any other kind of tubing except the kind they provided. Oh my gosh!!!
It was now 3:10pm Vegas time so I called Ryan in tears telling him that I would need the y-connectors we had at home. At that same time as I spoke with him I looked at Southwest website and found that they had a flight at 4:20pm nonstop to Boise for $170.00 and it would cost $120 to send the tubing fedex. I begged to please come bring me the tubing that friday evening and come help me get Kyle settled. The amazing man he is, he packed in less than 10 minutes and arrived at the gate at 4:19pm. That evening we troubleshooted the pump together, got it to work and it only took an hour for Kass to start feeling better. Ahhhh! The next day we spent helping Kyle unpack and setting up his room.
Never a dull moment!!!!
|Kass saying goodbye to Kyle before we left Boise.|
Monday, we started going back up in dose as Dr. B ordered. All of us a bit sad that it would mean 3 bag changes a day, 3 blood draws a week, and less and less time in between treatments for Kass. But it only took us 2 and half weeks to get Kass back up to maximum dose without really any problems. So glad for that part!!!
We also started hyperbaric chamber treatment for Kass. I had been researching the benefits and I can't believe more people are not using it. After Kassidy's brain surgery we have noticed balance issues, memory issues, and even bit of saliva issue (she's producing way more than she used to and chokes on it quite a bit and even causes her upset stomach). By reading about HBOT (hyperbaric oxygen therapy) when oxygen is pressurized it can help regenerate damaged cells or tissue, increase neural brain function, help reduce steroid dosages, helps body fight infection, and so much more. So she had her first treatment on August 9th, again she did so great in the chamber. What a trooper this kid of ours! We will be doing 30 treatment, but we have already noticed better balance, better mental clarity, more energy.
|The hyperbaric chamber! I get to watch Kass from the small window. My hero!|
|Kass a bit bored in the chamber last Friday!|
Also this last month we were fortunate enough to have Kassidy's story featured on two different publications here in Las Vegas.
Our friend Chantal wrote a wonderful piece about Kassidy in the Desert Companion Magazine:
Maggie who did Kassidy's story last year about Kassidy's Army did an update on Kass in the Las Vegas, The View, newspaper.
|Singer Ron Pope proudly wearing Kassidy's Army gear. Thank you Ron!|
On August 20th we held Kassidy's Army 2nd Annual Golf Tournament at Canyon Gate Country Club. Players, volunteers and our family had a great time. We didn't have the amazing turn out we had last year, but I think it was due to that it was held on a Monday instead of a weekend day, so we hope to change that next year. We still had great feedback from the golfers and had great raffle and auction prizes. Thank you so much to those that came to play, sponsored, volunteered, and donated. We appreciate each one of you.
|Kassidy's Army volunteers ready to help. Love you All.|
|Kass and her friend Alex at the tournament!|
Those of you that would like to check out the pictures from the golf tournament you may do so here:
We took a small trip to Salt Lake City the weekend before school started, Ryan was very busy at school getting ready for the new school year so we escaped for a couple days while he worked. We stopped to see our friend Catherine which we met in Houston at the Burzynski Clinic. Catherine was battling cancer for the 3rd time when we met her, she is now cancer free thanks to Dr. B. We got to spend some time with her in Park City, we had a great time with her. After, we spend the weekend with my cousin Ari and her baby Thiago. It was wonderful to hang out with them for a couple of days.
|Kass and Catherine! We hung out in her balcony that evening.|
|Out to dinner with friends in Salt Lake City.|
The night before Kassidy's first day of school she woke Ryan and I by calling us from her cell from the bathroom saying she needed help because she had thrown up. Since, at night she is connected to an extension chord because she has to charge her pump she can't really make it all the way to our room to wake us. She had thrown up all over the bathroom! Our poor baby! Her sleep is so interrupted that when she sleeps she is out cold, so it took her off guard. We felt for sure would miss her first day of school, but to our surprise she was up at 5am getting ready to go. She said she felt fine and was ready for the day.
|It's tradition to take a pic on the first day of school! Can you tell she's not excited LOL|
She's only missed one day in two weeks so we hope and pray she can attend as much as she can this year so she can accomplish her goal.
Our next MRI is scheduled for September 18th. Ryan and I are very nervous for this next MRI since it will tell if ANP is working. We ask to please remember us in your prayers!!!!
September is Childhood Awareness Month!!!!!! Go Gold before Pink!!!!!
Please remember our children fighting and volunteer or participate in your local childhood cancer charities.