Childhood Cancer Awareness Month

Yesterday was Chemo Day.  It was hard to believe when they handed me her roadmap (treatment plan) that this was course 21 of this chemo for Kelly.  She actually did a little better yesterday.  I was worried after her last treatment two weeks ago, when I stopped counting at 7 buckets.   So I talked to Dana, her nurse, and she suggested that we slow down the Irinotecan infusion for her.  (You should be a nurse, Michelle!)  So we ran it over 3 hours (plus the avastin, anti nausea meds, and flushes) She was still sick, but not as much, and she wasn't so out of it.  She looked up at me from her bucket at one point and smiled.  She just said, "I really don't feel that bad." Comparatively speaking.  Most kids would be miserable with Kelly's "I don't feel that bad."  Today she is just tired, but doing OK.  We scheduled her next chemo treamtment for two weeks from now, but instead of the morning like we usually do, we are going to try 2:30 so she can make it to her French Class, and then go to her chemo appt.  That way, she at least won't miss French on Wednesday.  I just hope we still have time to run her infusion slowly since they close at 7:00 pm. Her next appointment will be an experiment to see if this will work.  Once again, Shannon came with us all day to the Infusion Center.  She really enjoys going there and is going to miss it when school starts.  

September is Childhood Cancer Awareness month.  Even though Relay for Life is for all ages and all types of cancer, I just wanted to share this video from the Relay for Life we did this year.  You can see several shots of "Team Kelly"  and Kelly in her purple fuzzy hat. The beads she is holding are her survivor beads.  They get one strand for every year they have survived cancer.   Our team's theme was Childhood Cancer, and you can see the poster I made with facts and stories of childhood cancer.  Amy and Michelle, look for the stars with Kasey and Bailey!  Our poster and stars were gold because gold is the color of childhood cancer.  By the way, the luminary bag that says "In Memory of Gramcracker" is for my mom, who died of cancer 4 years ago.  All of her grandchildren called her that.  The Opening of the video shows Dana Point, the town we did the Relay in, which is close by.  The park where Relay was held overlooked Dana Point Harbor and the Pacific Ocean, which was such a nice view to have!

I just noticed something funny after I watched this video again.  After it is over, there are other videos you can choose to watch (since this is from YouTube)  If you scroll over the other choices and see one called CSI Dana Point, that is also something the girls did at Relay at Dana Point.  Kelly video taped it and they are just being silly and having some fun since we were there for 24 hours.  Ashley Diemer (Chloe's older sister) is the reporter.  Megan and her friend, Amy, are Phil and Tony.  The "guns" they use are marshmallow blasters.  They really do just  shoot marshmallows and really can't hurt anyone!  Thanks to Christy, who did all the editing on the girls' video.

A New School Plan

We are enjoying the last couple weeks of summer.  It has been such a good summer, which we don't take for granted after a summer of hospitals, surgeries, and radiation last year.  As we came closer to this next school year starting, one of Kelly's goals was to be able to attend school part of the time.  She knows she can't keep up with school full time since she has her chemo treatments every other week that she'll have to miss school for, and it takes a couple days to recover.  But she was isolated much of the time last year from kids her age, so she really wanted to be able to go to school and be with other teenagers for at least part time.  So, after some discussion with the guidance counselor at her high school, we had a meeting today with her, and some other high school staff to come up with a plan that work for Kelly and the high school.  I am so grateful to these people that have come up with ideas that Kelly is so excited about.  Kelly will remain with her home tutor at home for her main subjects  (she is so happy to have you, Karey!)  and she will get to go to school in the afternoon for her electives, French and Ceramics.  If she wants to, she can have lunch at school too, since her 2 classes will start right after lunch.  The French class will be a trial the first month or two to make sure Kelly can keep up with the absences she will have.  She is also happy because she already knows that one of her friends will be in her French class. That really made her day, Rachel!  Kelly is thrilled she will get to spend time on campus with everyone else and just be a normal teenager for part of her day once school start September 4th.  Until then, she is working with her tutor to finish some of her freshman credits.  She is still behind in her freshman classes since she couldn't do any school work last year until late November.  Thanks to everyone who helped make this happen for Kelly.  It means so much to her to be able to do something normal.

MRI Day

Our day started early with labs. They left her port accessed so we could use it to inject the contrast that is need during her MRI. Kelly often feels nauseous just being in the clinic.  I think there is too much association with what has happened too often there.  So she started out early this morning not feeling too good.  Then we walked across the street for her MRI.  She was still not feeling so well, so when it was time to add the contrast through her port, she knew she was going to be sick.  I think she was almost relieved to get it all out of her system so she could feel better to go back inside the MRI machine.  She was worried she would be sick while she was inside.  The rest of the MRI went smoothly. 

We went to Dr. Muhonen's office next and received great news!  He said that her MRI is clear and there is no sign of recurrence.  Another huge sigh of relief.  It was nice to have time while we were in the neurosurgery clinic to visit with Erin and show her pictures from our trip last week.  Kelly was happy to talk to her about Breaking Dawn, the book she was so anxious to read while we were away.  Erin had read it too and Kelly was glad to have someone to talk to about it.  I still have a couple chapters left.

So we can breathe easy for awhile again.  The chemo continues since it is doing what it is meant to do, keeping her tumor from recurring.  At least we can go to the infusion center tomorrow knowing it is for a very good reason and that it is working.  Thanks for all of your prayers for her scans.  They are really helping!

More Make A Wish Trip Photos

I added more photos from our Disney Cruise to our photo website.  Here is the link if you would like to see them:

Disney Cruise Photos

We had a fun day yesterday.  Make A Wish sponsored a day for their wish kids at Wild Rivers, our local water park. It was nice to play in the water and be wet on hot summer day.  We had a great day and were glad to be able to spend time with our friends the Diemers and Spoonhowers.  The Diemers are moving to Portland this weekend and we will miss them greatly.

Kelly's MRI is Tuesday at 9:45, then she has an appt. with Dr. Muhonen, her neurosurgeon, at 12:30 so we can get the results of the scans.  Thanks for all of your good thoughts and prayers for her!  I'll post the results when we get home.

Make A Wish

We just returned last night from Kelly's Make A Wish Trip.  We had a wonderful Disney Cruise to the Bahamas. We did some amazing things that we'll always remember.  There are a lot of photos we'd like to share, so I'll see how many I can fit on one post.  Hopefully I'll make a webpage on our photo website within a couple days, then I'll put the link here. Remember you can click on the photos to enlarge them.

The girls dressed up for dinner.  Notice Kelly and Shannon's hair - they had it braided on the ship.  It was a nice way to keep it out of their way during the trip.  They both still have their braids and it still looks good.

Kelly in front of the girls' stateroom.  Thanks for the door decorations Debbie!  It helped Shannon find the room when she came down herself!

The Disney Wonder docked at their private Island, Castaway Cay.  The other ship is the Flying Dutchman, used in the filming of the Pirates of the Caribbean.

Kelly couldn't wait to read her new book, Breaking  Dawn.  So she read on the beach until she was done! Notice all the empty chairs around her because we were all snorkeling.  Luckily she finished it the first morning so she didn't spend the whole cruise reading!  Thanks for bringing it to her Jen!  We also took a boat trip from Castaway Cay to a nearby reef for snorkeling.  It was beautiful with a lot of coral and colorful fish.  Kevin and Shannon and I took a bike ride around the island, which was a good way to see it.

Megan and Shannon relaxing on the beach on Castaway Cay.

One of the big highlights, and a big part of Kelly's Wish, was swimming with Dolphins while we were in the Bahamas.   She is getting a kiss from Andy, who played Flipper in the movie.

Parasailing was another favorite activity at Castaway Cay.  Kevin and Kelly rode tandem.

Megan and Shannon rode together (below) 

Coming home was hard, but being met at the airport by a limosine made it much more fun!  I have many more pictures I want to share, so hopefully I'll have a link to them soon.  Thanks so much to the Make A Wish Foundation for giving Kelly and our family a wonderful trip, a nice break from doctors and treatments, and memories that will last a lifetime.

Next week, we really get back to our real life.  Kelly has her next MRI on Tuesday and chemo on Wednesday.  We pray her MRI results will be good.  The trip was a good distraction from thinking about these things like MRIs and chemo, but now the reality of it is coming back.  MRIs are always nervewracking as we await to see if her scans will remain clear, since we know glioblastoma can recur any time (as it already has once.)  That is why she is still on a regular chemo schedule.  We thank all of you who have been with us and supportive through this journey, even if it is just good thoughts and prayers for Kelly.  That is what she needs most and we all really appreciate it.

Back to Florida!

Tomorrow is the big day!  We are being picked up at 5:18 am to go to the airport.  Kelly's Make a Wish Trip is finally here.  We are all excited about the Disney cruise and being in Caribbean Water.  

Kelly relaxing on the trampoline teenage style.  Gotta have the laptop.  This has actually been a good way for her to stay in touch with her friends, especially when she is not in school with them.

Wednesday was Chemo Day.  Since it is summer Shannon comes with us.  She really enjoys the Infusion Center since there is a lot for the kids to do there.  She was really happy that it was a chemo day for Bailey too.  She spent the afternoon with Bailey and his little sister.  At the end of the day, she asked if we could come back the next day, like Bailey had to.  I explained that Kelly only came once every two weeks and all their treatments are different.  She really wanted to come back the next day.  I was really thankful we didn't have to, but Shannon felt so strongly that she wanted to be there the next day with Bailey and his family.  So she ended up going home with them, spending the night, then coming back to CHOC with them the next day.  I just picked her up when they were almost done.  The nurses are offering to put her on payroll.

Kelly did pretty well through the first half of her treatment.  It is so nice to have distractions to keep her busy at the infusion center.  She was very happy that her friend, Sarah, came to spend some time with her there.  Sarah was also on our trip to Lourdes, France last Spring.  Thanks for coming to see Kelly, Sarah.  She really was excited to see you, even though she started feeling pretty bad.  I don't know what makes these chemo days different from one another.  Last time, I really thought we had come up with a good plan for anti-nausea meds because she never got sick.  We did the same thing this time, and I can't count how many buckets she went through.  Even after we came home, she kept getting sick until she fell asleep at 10:00.    The good thing is, she is feeling good now and ready to go tomorrow!

Her Make a Wish Party was also earlier this week.  Her wish granters gave her a backpack with her Make a Wish shirt and some other goodies for the trip. She had a just a couple friends over (the wish party budget had just been cut!) but had a really nice night. Thanks to her wish granters, Marissa and Rachel, for making this trip special for her. This is her friend, Katie, who hopefully will be planning her own Make a Wish trip soon!