Caring for Kelly Blog

One word - STABLE. We could not ask for more. This is fantastic news to Gary and me. We will proceed with our current treatment adding another chemo agent Tremodar on Tuesday.

God Bless,

Ellen

The pictures taken during Kelly’s Make a Wish trip to Disney can be found in a group room at

http://caringforkelly.snapfish.com/snapfish  You will need to register to see them.

Hello All,
We made it home safe and sound from Disney. Make a Wish sure does know how to take care of you.  You actually almost forget why you are there.  We had such an incredible time, words could not even describe it, but back to reality–smack in the face. (more on the Disney trip in another e-mail, to0 much to go into detail) 

We go to Childrens tomorrow for treatment.  Oh-Well life goes on and so does Kelly’s treatment.  I downloaded all my pictures tonight and Kelly’s also.  She took 147 pictures and they are really good.  I plan on putting them on a slide show and sending them out to the family soon.

Gary and I met with the IEP team at Willow Springs school this morning and Kelly is scheduled to start school on Monday.  She was on the high end of average and above average on all her tests - that is without any formal schooling in over a year.  The plan is to also pass her on to first grade in September.  The teachers feel that Kelly will be able to catch up by the end of the year and if not we can do one-on one over the summer.  Kelly will also have a personal aid to assist he with her walking and anything else she may need.  That made Kelly feel very comfortable.  That was her biggest concern, but she wanted to start tomorrow and go all day.  I only have her signed up for half day.

 We are also going ahead with hearing aids.  Her hearing loss is a concern and they will only help her with school.  She is ready, she told my mom that when she was at Rogy’s (daycare) she would take her baths at night, brush her teeth, read a story and go to bed.  That is what she wants to do again, she does not like taking tubbies in the morning and wants to go too school. 

 I am glad that we made the decision to send her to the public school rather then the Catholic.  Willow Springs school only has a total of 348 kids K-8.  The school nurse is having an all school meeting with the students on Friday to talk about Kelly and a note is going home to the parents explaining her situation in case of chicken pox or other things that the kids siblings may have at home and they will need to alert the school.  The meeting/note will state what she has gone through, but is now doing better and is no different then any of them.  Kelly’s kindergarten teacher told me today that the kids are so excited about her starting they keep asking her every day, is today the day Kelly starts.  The kids are also arguing about who will sit next to her.  I told Kelly this and she giggled and is very excited about starting.  I told her we can go out and buy a new outfit for her first official day of big girl school.  What a milestone for her and myself. 

I went and dug out the pictures of my first day of kindergarten and showed them to Kelly and she enjoyed that, asking lots of questions. (It was nice to have those to pass on to her thanks mom) I have a feeling Monday will be very emotional for me, more then it just being her first day of kindergarten.  Just think last year she was just coming home from the hospital from a surgery that she was given a 50/50 chance of survival.  We are far far from over, but this is the next step in a “normal” life for her.  I am grateful that Kelly is able to have the experience of kindergarten, I now pray for first grade but one day at a time, certain days it’s one hour at a time. 

I am starting to get e-mails from other moms with kids who are now in Kelly’s situation with refractory tumors for medulloblastoma.  All were asking about her new treatment because their doc wants to start this on their child.  These women are from all over the country.  I joined a group on-line a few months ago when it was determined that Kelly had remaining tumor.  Kelly is the first in the country to be treated with these meds for medulloblastoma.  This has been used in other BT with great results.  Dr. Jason went to a conference a couple of weeks ago thinking more kids would be on this protocol.  He was correct, but Kelly is further along, tomorrow will be treatment number 4.  It’s a yahoo discussion group and at times I find every informative but at other times to real if you know what I mean. 

Anyways, vacation was awesome and today was a great day and I’ll take that and be happy.  Molly wanted to know when she can start school also, she was cute about it.  I told her we will find her something.  She said, “mom I’m little and I need to get big, so I need to go to school like Kelly.”  Kelly’s next scan is April 22nd.  Choosing Hope.

Love,
Ellen