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.

A Walk in the Park

The CHOC Walk on Sunday was a great success. Thanks so much to everyone who joined us (and made it so much more fun) and everyone who donated to CHOC.  It was a great experience for all of us and we enjoyed being part of Team SuperBay.  Shannon and Bailey promised each other they would walk together.  

Pam and Ashley enjoyed walking much of the time with Shannon and Bailey!

Kevin being Kevin.  He did help carry the banner part of the time.

Unfortunately, Megan stayed home sick (she just had a cold, but we didn't want to spread her germs) , but it was so nice to spend the daywith Shannon and Kelly!

Kelly was happy her friends Katie, Kristen and Sandy came.  

Shannon and Ashley dancing their way along the walk through Disneyland

California Adventure was also part of the walk.

Baby AJ, a leukemia survivor, (carepage: Papa Anthony Joseph)  gets out of his stroller to pose with the girls and Bailey.

Bailey did ride piggy back for part of the walk.

It was really moving to see so many people come together for this event to support CHOC. 

Tomorrow, Kelly has chemo.  Hopefully she'll do OK, She had a rough day today when she went to CHOC to have her labs done.  We were happy to meet Michelle and her son Grayson, who came down for his MRI. I met Michelle on the website, People Against Childhood Cancer  http://curechildhoodcancer.ning.com/  

This is such a great group, looking for ways together to promote awareness of childhood cancer so it will receive the funding it needs.  I have mentioned this website on here before, but it is a really good group to join if you are interested in helping childhood cancer.  It doesn't cost anything and you don't have to have a child with cancer to be part of it.

Here is Kelly with Grayson waiting for his MRI. (I'm going to email you this photo Michelle!)

Beating the Odds

Kelly had an appointment with her opthamologist at CHOC today. He has been following her since he first saw her in the hospital 2 days after surgery, when she couldn't read.   Dr. Sami hadn't seen her in 6 months.  After hearing how she has done with treatments and MRIs the during that time, he looked at her, smiled, and said "You're beating the odds."  She really is so far.  No one expected her to be doing as well as she is right now when she recurred about a year ago.  

Kelly's next MRI is October 29th, 2 weeks from today.  We pray she will still be beating the odds.

Shannon is away at 6th grade science camp near Big Bear.  She was so excited to go away to camp for 4 days with her classmates.   It is quiet here without her, but we know she is having a great time.  She comes home Friday afternoon.  Then we are going to see Wicked at the Pantages Theater in Hollywood that night (thanks Kevin, this was a birthday present from him last weekend.)    Shannon is very hesitant about going to see this show.  She used to be obsessed with this musical.  But the first time we were going to see it was when Kelly had her seizure, which was so scary for Megan and Shannon to see.  Kevin and Kelly were still at the hospital when I left with Megan and Shannon to get them to the show.  The plan was that Kevin and Kelly would meet us there as soon as she was released, which we were led to believe would be soon after we left.  They never made it.  Instead of being released,  the doctor came in and told Kevin they found a mass on her CT scan.  He called me at the theater to tell me, and I don't remember watching the rest of the show. This was the night our lives turned upside down. We couldn't leave the theater, we had been picked up by friends from the hospital.  Shannon must have felt my anxiety and had a hard time enjoying the show, knowing that her dad and sister were supposed to be there with us and they weren't.  

I told Shannon that going to see the show with Kelly would be a good way to be able to enjoy it again, knowing we were finally all there together.  I hope it works and she can finally enjoy what used to be her favorite musical.

It's not to late to join us for CHOC walk, or sponsor one of us to raise money for the hospital that helped Kelly still be with us today.  Thank you so much for those of you that have contributed or will be joining us Sunday.  If you still would like to help, please scroll down to the CHOC walk post below for the links.   You'll be making a difference in so many children's lives. 

Help Wanted

hey, it's kelly.  my mom knows i'm writing this time. : )  we have had a busy week.  my mom and i went to a radio station, 104.3,  in los angeles, well burbank actually, and we did an interview for a show called my community.  we were interviewed for a half hour by a nice guy at the station named jason.  my mom had all kinds of facts and notes she had for the interview because we were talking about childhood cancer awareness, but she forgot them at the hospital when we stopped on the way to have my labs checked.  but she seemed to remembered a lot and i got to talk too.  we talked about how childhood cancer does not get enough attention and what people can do to help.  the interview will be broadcast sunday night at 11:00 pm.  i know that is late, but it will also be on their website  http://www.1043myfm.com probably after sunday night.  we got to meet Kari Steele, the daytime dj at the station while she was working.  thank you so much Kari for helping get this set up.  she is good friends with karen, whose niece also had a brain tumor.  Karen told Kari how not many people knew september was childhood cancer awareness month and it didn't get the attention it needs.  so Kari helped get her radio station to do a show about it.

One of the things i am really looking forward to this month is the CHOC Walk.  it is coming up really fast.  we still need donations to be able to participate, plus i just want to be able to help CHOC because they have helped me and other kids so much.  we have already had a few people join the team we are walking with, Superbay with Bailey and his family.  thanks so much. make sure you sign up online (below) if you want to walk with us.  but now we still need your help.  we really need donations.  if  you scroll down to the post below,  my mom put links with each of our names.  we would really like it if you would donate.  if you don't want to donate online, you can mail us a check and we will take it to CHOC.  Email my mom if you need our address or have any questions.    kathylaude@cox.net  

We have to check in for the walk by next Friday, Oct. 17th  so we need to get all donations by then.  

OK, my turn!  This is Kathy now.  I have one more request.  One of the things that has helped us on this journey is meeting other families online that are going through the same thing we are.  I have received a lot of good help and support from other moms whose children have the same or similiar diagnosis as Kelly.  One of those families just received some bad news yesterday after an MRI.  Even though I have never met Amy Radford, she has become a friend and I feel like I know her from all of our emails back and forth.   This family could really use some prayers right now for Kasey, who has the same tumor as Kelly.  You can visit his website at www.caringbridge.org/visit/kaseyradford.  You may also remember Coleman Larson.  They are also looking at tumor progression and are at Sloan Kettering in New York for treatment.  You can visit Coleman at  www.carepages.com/carepages/colemanscott.   Also keep Bailey in your prayers.  His MRI will be repeated in a few weeks to recheck the small spots in his lungs.  His family could use your prayers. (His website is in the post below.)

Your prayers are evident in Kelly.  She continues to do well.  She had a long chemo day yesterday, but felt better and didn't get sick until the very end (when some of her meds wore off)  We didn't get home until after 8:00 pm.  She is pretty wiped out today, but hopefully will have some of her spunk back tomorrow.  (She says that is why she couldn't be her usual funny self in her own post above.  She just really wanted to talk about the CHOC walk!  That is very important to her.)  Thanks to all of you for you continued support!