Yes, Virginia, there is an update...

Happy Thanksgiving!

It has been quite a while since I updated.  I know it is time to update when we start getting phone calls making sure Kelly is OK.  For the most part, no news is good news.  Kelly did have chemo last week.  She did pretty well during chemo, and luckily slept through a couple hours of it.  But as soon as she sat up to go home, she got sick.  It didn't end until she went to bed late that night.  So we need to figure out how to keep her more comfortable not just during chemo, but the rest of the evening also.  Then just as she recovered from chemo, she came down with a cold.  What she thought were allergies yesterday turned into a full blown cold (hopefully just a cold) today.  She is feeling pretty bad and is just resting today.  We're keeping a close eye on her.

While we were at CHOC last week for labs, Kelly's fourth grade teacher, Clare, had an appt. for her daughter for an MRI and then an appt. with Dr. Muhonen, who is also her neurosurgeon.  So after labs, Kelly and I met them so Kelly could help Clare with her 3 year old twin girls.  It is always good to see Clare, and Kelly just loves being with her girls. She also was happy to get to see Dr. Muhonen.   This is Kelly with Caitlin and Brianna waiting Caitlin's MRI.

If is finally cooling off here and feeling like Fall.  Perfect weather for Thanksgiving this week.  We are looking forward to a cozy day at home Thursday.  Kevin is leaving on Sunday for a military class in Rhode Island (I wish we could go!)  Since he is going to be gone for a couple weeks, we are going to get out all of our Christmas Decorations and put everything up - starting Thursday after Thanksgiving dinner!  It takes us several days to get everything decorating and get all the boxes put back away.  We are really looking forward to it.

Kelly is featured in a calendar made my Heide Randall for Team Unite.  Heide, mom to angel Jessica, works tirelessly to raise awareness and funds for childhood cancer.  These beautiful calendars are for sale at the Team Unite store on Cafe Press (link following)  They feature kids like Kelly and also include information on Childhood Cancer. Kelly is on the December page.  You can see photos of the calendar by following the link.  So if you need a 2008 calendar, here is one with a really good cause.   Here is a message about the calendars from Heide:

The Team Unite calendars are officially AVAILABLE!!

http://cafepress.com/teamunite

Please note that on our smallest calendar ("Team Unite Wall Calendar"), the informational text is a bit difficult to read from a distance. Please consider one of the larger sizes ("Team Unite Vertical Wall Calendar" or "Team Unite Oversized Wall Calendar") if you feel this may be an issue.

The profits from these calendars will be split evenly between CureSearch and the Jessica Catherine Randall Memorial Scholarship.  

Team Unite ......  Help Cure Childhood Cancer

Las Vegas Dance Convention

Last weekend Megan and Shannon's Dance Team attended "The Pulse" Dance Convention in Las Vegas sponsored by the Broadway Dance Center of New York City.  They had the opportunity to take dance classes on Saturday and Sunday with the choreographers from "So You Think You Can Dance," one of their favorite TV shows.  Saturday evening, Megan's advanced team performed in a Showcase.  It was great for the girls to be exposed to different styles of dance and take classes with well-known choreographers.  All the girls were excited to take Mia Michael's class and Kelly was happy to have a chance to talk to her. (See first photo below. The guys in black are her bodyguards.)  If you were following Kelly's story a year ago, Kelly's fourth grade teacher, and good friend now, Clare Reding, contacted Mia and told her about Kelly and what  big fan she was.  So shortly after Kelly was released from the hospital after her recurrence last year, Mia came down to our house to visit Kelly.  (It is in the October archives if you missed it last year.)  So it was fun for everyone to get to see her again.  We had such a fun trip with the girls' dance friends and teachers. Since Dance is such a huge part of Shannon and Megan's life, this weekend was exceptional for them.  Kelly had a good time just being away for the weekend.  Thanks for being such a fun car companion Louise!  And as always, Thanks Misty for taking such good care of Shannon. 

Kelly talking with Mia Michaels

Megan, Amy, and Kelly at New York, New York

 Our first night in Las Vegas.

Gold Teammates Amy, Paige, Kate and Megan.

The convention was held at the Las Vegas Hilton.  All the girls on the teams had fun staying on the same floor of the hotel.  

This is all the girls with their teachers.

Shannon with her Red Team

This is the ballroom where they took their classes.

All the girls with the Pulse Faculty: Shane Sparks, Tyce Diorio, Laurieann Gibson,  Mia Michaels, Cris Judd

A Weekend Away

Kelly had chemo yesterday and we were very happy to be able to come home at the end of the day.  She was pretty nervous after what happened last time when she was admitted and spent five days in the hospital.  But her doctor reassured her that it shouldn't happen again, and it didn't. She has been on two different meds to protect her stomach.  She did much better and actually slept through a couple hours of the afternoon.  She did get sick at the end, but that is still much better than all the buckets she went through last time.  They think she was fighting something viral two weeks ago and that is what made her so sick and eventually caused the fever.  She is resting comfortably today and catching up on her "Charmed" reruns.  She feels better as long as she has food in her stomach.  She has a theory that if food is going down, it can't be coming up.  As long as she feels better today.  

If you have been following Kelly's story long enough, you may remember last year when she got to meet Mia Michaels, one of the choreographers from So You Think You Can Dance?  The girls get to see her again this weekend.  Megan and Shannon's Dance Team is going to "The Pulse", a dance convention in Las Vegas.  They will get to take classes with some the the Dance Choreographers from the show.  They are so excited.  Megan's advanced team will be performing in the the showcase Saturday night in front of the choreographers.  Kelly is going too and looking forward to a weekend away and getting to see Mia again.

CHOC Trick or Treat

Infusion Center Staff and kids

Friday morning, Kelly, Shannon and I went trick or treating at CHOC.  It was nice to be there for a fun reason!  We met Ashley there, then trick or treated with the Spoonies and Cheyenne and her mom, Virginia.  We're sorry we missed you Sharon, we would have loved to have you and AJ with us the whole time.  I'm glad we got to see you though.  We have to get together soon.  All the kids had fun walking through the hallways at CHOC lined with different departments handing out goodies.   Kelly was happy to see some of her nurses, especially when they weren't about to infuse her with chemo!

Kelly with two of the Infusion Center Nurses, Barb and Angela

Kelly with nurse Dana. Their costumes looked good together!

Of course we had to go to the neurosurgery office.  Kelly was happy to see Erin and Myrlee there, and she also got to see Dr. Muhonen, who looked really good as a tiger.

Kelly and Shannon with the Spoonies

Kelly and Cheyenne

Thanks so much for spending the morning with us Ashley!

Shannon with Bailey - they had a fun morning together.

Kelly is feeling more herself again.  She is having a fun weekend.  The girls went trick or treating with friends last night, who all came back to our house afterwards.  Tonight, Megan and Kelly are spending the night in Palm Desert with a group of girls for one of their friend's 16th birthday.  Yes, that was a little bit hard to let Kelly go after the week she had last week, but luckily, one of the moms that is there with the girls is a nurse, so that made me feel better. (Thanks Michelle!) I know a night away with friends will be good for Kelly!

Two Steps Forward, One Step Back

Well Miss Kelly had been feeling better and better this week.  She went to school yesterday and enjoyed being in her classes again.  We went to the clinic this morning to have her labs checked and the good news is her counts are coming up nicely.  They have come up quite a bit from Sunday when she was discharged from the hospital.  After we left the clinic, we went out to breakfast with her friend from CHOC, Cheyenne and her mom, Virginia. (www.caringbridge.org/visit/cheyennebroswell )  As soon as the waitress put the plate down in front of Kelly, she suddenly felt sick.  She took a bite or two, and that was it.  Back home to the couch.  She has spent the rest of the day resting, and hopefully will feel better tomorrow. It looks like it is just taking her some time to bounce back.  She has to feel better this weekend since  she has a lot of fun plans, starting with a Halloween sleepover at their friend Sydney's (Megan's foster sister!) house tomorrow night.   Friday morning we are planning to go up to CHOC to go trick or treating,  Shannon is looking forward to that also.  

I have had some questions about Bailey and how he is doing.  You will all be glad to know that his scans from Monday of his chest were CLEAR!  What a relief!  Another answer to prayers.

Home Sweet Home

Thanks Stevie, for bring Shannon and Megan to the hospital to visit Kelly.  She was happy to all of you!

Kelly enjoyed all of her visitors Saturday, which was the first day she felt good enough to want to see people.  Thanks Linda and Turners for bringing us food "from the outside."  That is so appreciated!  It was great to see you Sarah and Eileen.

Kelly was happy to have lots of reading time in the hospital when she started feeling better.

This is her bear her friend Katie gave her after one of her surgeries last summer.  "Rudy" the bear has to come with Kelly whenever she is admitted.  He makes a good pillow and she likes to snuggle with him.  He is the same bear in the photo in the right margin.

Hello everyone,

I am back at home from the hospital.  I will not say I am normal, for apparently that is not a word that exists at CHOC.  Everytime I said that something ( i wont say what ) was normal, they would ask , " what is normal?" it got SO irritating!!! so, i guess i could say that i feel FINE. good, fine, dandy..... NORMAL. so, ya, thats about it. well lets see, what else? umm... i guess i will leave the rest up to my mom. i slept, saw lots of tv, ate a little... and thats it. bye.

   -kelly*

It is very nice to be back in our own home with all three girls under one roof again.  Thanks so much to the Schultes and Elliotts for helping out with Megan and Shannon (their foster families!) I don't know how we'd do this without you!  The girls really enjoyed staying with families they are so comfortable with.

Kelly is doing better, as she says above.  Her blood counts are lower than normal, so she'll have them checked again this week. We need to be careful of germs also until they start coming back up.  I think she is feeling better just being home with her sisters (and of course Murphy!) 

 

Still at CHOC

Kelly is still in the hospital.  The bleeding seems under control and they aren't too worried because she has no pain with it.  Her fever is keeping her here. We originally thought we'd be there just one night, but that was the night her fever became high.  Fevers in oncology kids are serious and must be treated.   She is still on IV antibiotics and they want to keep an eye on her until tomorrow.  So she is getting a lot of rest and fluids. She still feels a little nauseous and as she says "wiped out."  Hopefully she'll feel better this weekend by the time we go home on Sunday.

Kevin is in New Jersey for his high school reunion.   Of course it had to be this weekend, amazing timing.  Everytime Kelly is inpatient, he is not home the whole time.  He did delay his flight for a day after she was so sick on Wednesday night.  By the time he left, she was doing better and we knew she would be OK.  

Thank you to those of you leaving comments for us, it helps more than you know, especially times like this.  It really cheers Kelly up when she is feeling yucky, to know people are thinking about her and leave a little note in comments (It helps me a lot too!)  It gets lonely in the hospital.  She hasn't wanted visitors until yesterday afternoon, so if you like to come see her, she would like that now.  You can call me on my cell phone first.  Thanks for all the prayers and good wishes for Kelly!

INPATIENT

Kelly went to the infusion center yesterday for chemo, and her bad day from Tuesday just continued.  She was getting very sick, and there was blood in her vomit.  So her oncologist admitted her to find out why she was bleeding so much.  Then during the night, her fever spiked, so there was another issue to unravel.  The GI doctor came to see her and, since her hemoglobin was stable and she has no stomach pain, he didn't feel the need to scope her as we expected.  He's just watching her blood levels.  The good news is, since she was there anyway, they did her MRI this morning.  Dr. Muhonen came to see us and was very happy with her MRI results.  No sign of tumor.  As Kelly says, unfortunately this doesn't mean she's cancer free, but she is tumor free.  With a grade 4 tumor, which is what glioblastoma is, there are almost always cancer cells left that don't show up on the MRI.  That's why the chemotherapy continues.  But we're thrilled with how good her MRI is one year after her last surgery.  What a coincidence that she was admitted on Oct 22, which is exactly one year from the last time she was admitted.  We are much more optimistic at this time than we were a year ago.  She is still beating the odds.