Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Sunday, September 2, 2012

Lots of "News"

Its been pretty quiet here since the last update. Emily has had clinic visits twice a week, which has consisted of platelets and blood. She hasn't really complained since earlier this week about her toes bothering her, so hopefully that side effect has gone away. Her weight continues to go up and she is eating great, she is up to 28.1 lbs.

We have lots of "News", meaning a lot of new things coming into our future. Monday we got her registered for Kindergarden.  Wow, did I say kindergarden??  It is so hard to believe that Emily will be starting kindergarden and Jessie will be in 5th grade and Brianna will be starting daycare. Like I said we got her registered and was even so awesome that the day I went to register her, I was able to meet her teacher, Mrs. Tetlow.  Mrs. Tetlow is a 8 year cancer survivor so talking with her about Emily so very much understood what we were going through. Emily is signed up for homebound so that when she is not able to be at school due to treatment, she will have a teacher come to the house or we will work something else out.

Emily and Mrs Tetlow.  She was reading to Emily.
Thursday and Friday they were doing orientations for the kids.  Emily wasn't able to go and Jessie did go and meet her teacher on Friday. Mrs Tetlow was pretty amazing to wait around to meet us on Thursday afternoon after everyone was gone (at 430) to meet with Emily and to be able to meet Doug. Mrs. Tetlow is great with Emily and we feel very comfortable having her.  She will let Emily make the calls and they won't use the clinic because of germs.  She said she did talk to Jessie's 5th grade teacher in the case that Emily does ask for her.  Also while Emily is not in school, we have brought a Monkey to Mrs. Tetlow, called Monkey in My Chair, so the students will know that they have another student and her name and the monkey will go with the class where ever the others students are.  Mrs. Tetlow also met with with the Education Liason from VCU and she is working to make sure she comes and talks to the students about Emily and we will write a letter that will go home to the parents on the same day that will help the parents to talk to the kids with their questions.  So I want to also open this up that if any of the parents have any questions at all, to please let us know. Emily seems to be excited about school, but we know she may not make it the full day and if she doesn't that is ok.

Emily and her Monkey in the Chair
School actually starts Tuesday, and honestly I can't believe that Emily will be starting school soon.  I know I will cry as I can see Doug having some tears about it too, I to have cried every year that Jessie has gone off to the next grade.  I have every year taken Jessie on her first day of school, and this year will be the first year that I won't be able to since Emily has clinic,, which bothers me.  But it isn't like us to not do something another time, a date is just a date. So we will celebrate the next week as the first day as we will with Emily for kindergarden and Brianna for daycare. Brianna starting daycare the same day as well, will be hard on us and this will be the first time she has ever been in a setting like this.  We really want to thank CCDC for all that they have done and that they will be working with Brianna.  We are so thankful that Brianna's teacher will be Mrs. Robin, whom was Emily's first teacher there as well.

Lots of new things to be happening here soon, so it will be a lot to take in and adjust to.

On the medical front, next week we head to Michigan for end of trial re-evalution scans and bone marrow.  We did learn that Wings of Mercy will be able to work with us and get us a flight there by the pilot from the previous times and a different pilot to get us back.  So we are very thankful to have a flight and get that taken care of.and to also have a car while we are there.  We would have drove if we needed to, but there is still possibiities we could be traveling for future treatment, because we are really not sure where we will end up.  We are having the doctors working on seeing about antibodies because that is our goal.

Don't forget it is September, and it is childhood cancer awareness month, lets continue to spread the awareness like we have the rest of year.  We need to make everyone aware.
We wear Gold for Emily

1 comment:

  1. I am so very blessed and thankful for these encouraging words. I hope this school year is amazing for all of you. Thank you for continuing to share your journey.