It's been a while...

So sorry it has been so long.  I am really going to try to be a little better about updating this. 

 I unfortunately did not post when we had some hiccups.  Ellie was hospitalized near the end of March.  Basically they discovered that her chemotherapy made her constipated and everything they tried they could not get it to brake up.  Finally I want to say day three they gave her an edema.  Not something you want to explain or have to your eight year old experience.  Usually leave that for middle age people getting a colonoscopy.  Well once again Ellie gets a new experience not a pleasant one but the good news is it worked. I cannot believe it has been a couple of months.  Ellie has been trucking along.  Although she has gone through the month of April without a long hospital stay that did not mean we did not have drama.

Ellie has been having her chemotherapy done at home three weeks out of the month by an in home nurse and then the fourth month we would go to Children’s hospital.  If you read my last post due to a mix up in medication and miss labeling that was discovered. Ellie’s doctor felt more confortable and felt it was safer for Ellie to go downtown weekly for chemotherapy.  Although we have only been doing this for two months now after our long stretch of being able to do chemo at home it feels like an eternity.  The drive down and back is always very bruttel I feel for anyone who has to do that drive on a daily basis.  It took us yesterday over two hours to arrive at the hospital find parking, check in at front desk and then check in at children’s.  I almost wish I could take you on a video journey of what our days are like at the hospital so you can get a taste of how long the day becomes.  Though our Wednesdays have been rough I feel so blessed to have the backing of my school PTO and friends who set up dinners for us on Wednesday till the end of the school year.  I cannot tell you how wonderful it is after spending a long day at the hospital being able to come home and not worry about cooking.  We are going to cherish the last few meals we get before the end of the school year. 

I would say the hardest thing that I have come across through this whole Wednesday chemotherapy is Ellie really struggling with the change.  She truly loves school and missing a day a week is such a struggle for her not only socially but educationally too.  She told her teacher she tries to hide from me on chemotherapy days so she doesn’t have to go. 

Lots to update sorry this is so long but only a few for things I wanted to share with you.  Ellie also had a hiccup back in April were my heart did drop.  She was waking up in the mornings and throwing up once or twice and then fine for the rest of the day.  This happened a few days but not even in a row.  This brought me back to before Ellie was diagnosed she would have the same symptoms.  Needless to say I thought her brain was filling with fluid and it scared me to death to think she might need a shunt.  Until we tested her with an MRV (it much quicker MRI) I was beyond sick to my stomach.  After they did the MRV they found no fluid build up and all was good.  Once again nothing like drama for our family.

Ok I promise almost done.  I wanted to discuss an incident that occurred at our grade school this past week.  A bomb threat was written on the wall of the school over last weekend saying that the bomb would explode on 5/7 Tuesday.  I truly was not going to touch base on this but so many people are on our local Patch just bashing parents and being extremely negative.  I have yet to comment because I am not sure if anyone can get through to some of these people that are beyond negative.  I sent my kids to school on Monday and I must say I was very nervous doing so but after a long time of weighing the risk and reward I decided to keep my kids home from school on Tuesday.  Most of my friends did send their kids to school on Tuesday.  From what I have been getting from comments on our patch are people calling parents rubber heads for keeping our kids home.  I feel like there is no right or wrong answer here as a parent.  Parent’s needs to make that decision on their own and no one has the right to judge what decision a parent made.  I put this out on my Facebook.  The likely hood of this threat being valid was 1 in a million but then again if you told me my daughter would have a rare brain tumor I would say that’s more than one in a million chance of that happening.  There are no guarantees in life and as parents we make the best judgment we know how.  There are no wrong or right answers and for those people that criticize other people on how they are raising their kids remember no one is perfect especially parents.  Now as for me I think I probably would of sent my kids to school if this was pre brain tumor.  My parenting has changed and I am sure no one can blame me or understand unless you live in my shoes.  So to all the Lemont people that are criticizing the decisions of some of the parents please keep in mind you don’t know the back-story of these families.  Who knows maybe they had a family member in the Boston marathon or a niece or nephew in the Connecticut school. 

When I was contemplating weather or not to send my kids to school I spoke for a while with mom about it and I broke down and cried.  My mom said I am so sorry, all kids should get a chance to be children with and have a innocence about them and you as a parent should not have to make this decision for a 1st and 3rd grader weather its safe to go to school”.  But she said (this is were I broke down because it touched me)  “I am even sorrier that Ellie has lost all her innocence of childhood.  She has not had a chance to have a childhood and has lost years to this tumor and its not fair.”  I never looked at it like that.  She has a greater loose then time, memory, school, sickness; she has lost an innocence of her childhood. 

So last thing I promise.  I formed a team to do the RUN/WALK FOR GUS.  My sister & brother-in-law are doing the 5k run.  Dave, myself, and my kids are doing the one-mile walk.  All the proceeds that are raised go directly to Brain tumor research.  And even better research to the doctors Lurie Children’s.  I know Ellie’s doctor has told us of many brilliant things he has been working on and I want o support him in anyway I can so that maybe one day there will be a cure for brain tumors.  I attached the link.   Everyone is welcome it is a family friendly event.  They have face painting, food, and band.  It is on a Thursday July 25th Downtown in Lincoln Park area. I am hoping the team will be huge in show of support to Ellie.  Just go to the link and at the bottom of the page it says join Ellie’s Angels Team.  Please join us for an awesome night.

http://foundation.luriechildrens.org/site/TR/Events/YoungAssociatesBoard?team_id=22420&pg=team&fr_id=1460