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

Yesterday marked the two-year anniversary of Ellie beginning Chemotherapy.  We celebrated by going downtown for a blood transfusion.  Although this was not scheduled ahead of time it was something that was needed.  For the most part it went pretty smoothly.  There was one problem in the mix of the day.  We originally planned for the in home nurse to come for chemotherapy on Wednesday so the Home base nurse program already planned delivery of Ellie’s Chemotherapy.  Her nurse from Lurie Children’s hospital told me just to bring the Chemotherapy with to the hospital on Wednesday and they would administer it while we were there.  For some reason god was watching over Ellie yesterday.  When we handed the nurse Ellie’s chemotherapy and Zofran the nurse noticed that the medicine was miss labeled.  It was pretty scary when Ellie’s nurse was shooken by this.   Well apparently they have thought about disbanding the in home nurse program for sometime now for this exact reason.  The mistakes that can happen at home could be very dangerous.  Needless to say the Doctor and Nurses both informed me that I would be getting a call later this week to tell me what the plan is for Ellie’s medical care.  Although I would drive to the ends of earth for my daughter’s medical care I am nervous about the change of schedule once again.  We finally had it worked out where Ellie was down to missing only one scheduled day of school a month and now we are looking at once again driving to the hospital once a week to get her medical care.  But on the other hand I obviously want to do what is safest for her.  It seems as if every time we get confortable an in a routine things have to change.  So now we wait for the next step. 

On a positive note we met a foundation I was unfamiliar with.  The Young Association Board, and they informed us of an event this summer called Run For Gus.  This foundation totally supports Brain tumors and supports Dr. Goldman’s research for a cure.  Needless to say I will be heading up a team for this summer in Ellie’s Name.  From what all the nurses and doctors told me this event is very kid friendly and tons of fun.  I am very excited to be able to support something that directly benefits a cure for my daughter.  So more information on how to join Ellie’s Team will be coming soon. 

One other quick note, April 20th is the One for the Kids Cocktail party.  They were such great support for our family last year and want to continue to support their fundraising effort for other families in need.  Dave and I will be attending this and hope to see some familiar faces there also.  If you went last year you know we all had a great time.  Visit OneforTheKids.org for tickets and more information.  I included pictures of Ellie in the hospital yesterday and pictures from last years one for the kid’s event.  Enjoy!

So today is two very important dates for me.  One being the last day you can signup for Sheri Staaks blog at www.sheristaak.com.  Everyone that signs up today she will donate $2.00  to Ellie for her medical expenses.   

Ellie has had three brain surgeries, port-a-cath surgery, approximately 10 blood transfusions, 90 weeks of chemotherapy, Physical, speech, and occupational therapy,  9 ER visits,  13 MRI’s, 4 Cat scans, 3 MRV’s,  6 long term admissions to the hospital.  And I am sure there are plenty other procedures I am not even thinking of at the moment.  This all within 2 ½ years.  These procedures and keeping Ellie alive is not cheap.  Please consider signing up for the FREE blog and help by doing something small in your eyes but big in our eyes. 

And then the other important date the eve of my Birthday

 As a child I remember blowing out my candles and wishing for a new shiny toy or a vacation to Disney world.  I wouldn’t always dream too big but there was always something that wasn’t necessary needed at the time but defiantly wanted.  As I grew old blowing out my candles I really stopped wishing for anything.  You get a little embarrassed as all the attention is drawn on you and you blow out your candles as quickly as you can.  Not only that but as we grow older we loose the magic of wishes.  Well not so much anymore for me.  These past two years most people would probably notice that there is quite a bit of a pause for me after the singing is done.  The long pause is because I am very careful for what I wish for.  No longer do I wish for a vacation or a shiny toy but I dedicate my wish to Ellie.  The long pause is because I have to really think through how I want to word it each year. For this could be the wish that comes true.  I believe the first year it was “Please let Ellie live another year” and if I remember correctly last year was something like “Please let Ellie survive this tumor” I will be thinking about that one moment when I blow out my candles tomorrow all day today.  I will be thinking what do I really want to wish for this year.  Do I wish for another year or do I think bigger like a cure.  Sometimes I think if the wish is too big it might not come true so maybe I shouldn’t wish for a cure but for Ellie to live a long and happy life.  If you are one of those people that blow out your candles as quickly as possible so everyone will stop staring and there is no magic in wishing anymore.  Don’t waist your wish this year after all sometimes wishes do come true.  If you have a perfect life and have no wishes than think about donating your wish to Ellie.  My wishes will never go to waste again.  When you have a terminally ill child it is so important not to waste anything.  Even as simple as a birthday wish, or a coin tossed in a fountain wish.  So lots of thought will go into my birthday wish tomorrow.  Don’t let little things go to waste. 

As most of you that keep up with my blog know Ellie has been doing fantastic but she still needs prayers and love because within the 10 week gap of her MRI things can always change. 

P.S. Give me a great birthday gift by signing up for the Blog to help with Ellie’s medical expenses.  Remember TODAY IS THE LAST DAY!  www.sheristaak.com.  And please share with family and friends.

One last thing, I am helping out this year for the School Fun Fair in April and we are looking for any donations of services or items for our raffle baskets.  Please contact me if you could help out in anyway.  My email address is Kyliew2@aol.com.  Thanks for your support.  

REALLY IMPORTANT NOTE BEFORE I GIVE AN UPDATE.  Can everyone go to the following webpage and put your email address to follow the blog.  Then you will get an email to confirm and confirm it.  Sheri Staak the author of the website will donate money to Ellie for medical costs for every person who subscribes by the end of the month.  Please share this with friends and Facebook it would mean tons if you would be willing to do this for our family.  It cost nothing just a few minutes of your time.  
THIS MUST BE DONE BY THE END OF FEBRUARY TO GET CREDIT. So please make sure you do it before the end of February.  

http://sheristaak.com/put-the-wow-in-your-relationship/

Ok now onto the update of this past week.  This week was like no other, it was slightly challenging with my mother and father having surgery.  Ellie also had to go downtown for Chemotherapy and monthly checkup.  But I am happy to say that this week has been a complete success.  Both surgeries went extremely well and both my parents are amazing.  They both have recovered like rock stars.  I guess we know were Ellie gets her strength from. 

This week as Ellie was getting a checkup from Doctor Goldman, I thought back a year and half ago and realized how far Ellie have come.  As she giggled while Doctor Goldman checked her out.  Right before he left he said “Wow, my girlfriend likes me so much better these days.”  Took me a minute to catch on I was about to say “Your Girlfriend? You have a wife” but luckily I figured out that he was talking about Ellie.  In my last post I stated Ellie’s tumor is an mm smaller in one direction and the cysts inside have grown.  The doctor wanted to be clear that this could mean one of two things that the tumor is about to attack and grow or the Chemotherapy is working and it is deadening the cancer cells.  We here are leaning towards the deadening of the cancer.  But it really stinks that even when you get good news there is always underlining concern for bad news.  But Ellie is doing amazingly well.  I had her IEP meeting at school and we were all very impressed by how well she is doing considering she has chemotherapy each week, misses quit a bit of school, and has short term memory loss.  So all and all I am so pleased how far Ellie has come in the past two years.  The other day I was saying to my sister that Ellie was going to be in fifth grade in two years and switching schools.  My sister said, “Wow isn’t that exciting” My response was “NO”  (I’m thinking in my head she is growing up too fast).  Well my sister explained what she was thinking, she was thinking that two years ago we couldn’t even picture a month down the road and now I believe that she is going to survive this.  She has to survive this.  Till next time Happy Belated Valentines Day.

If everyone could please head to the website

http://sheristaak.com/put-the-wow-in-your-relationship/

And subscribe for Ellie…

Thanks for your love and support as always.  This blog has gotten me through the past two years and hoping it will continue to be therapy for me.  

I know I am seriously slacking on this updating of the blog.  I am pleased to tell everyone that Ellie came home on Monday.  She has been hanging with me at home for the past week.  We are hoping and praying that she will be going back to school this upcoming Tuesday.  Wednesday is another day downtown for our monthly check up with the Doctor.  I am hoping that all goes well and Ellie will be able to get chemotherapy.  She has not been able to get Chemotherapy in two weeks now.  Also I am hoping to get to see her MRI scan.  The doctor did stop by while we were in the hospital to tell me he was Optimistically pleased.  That the tumor was ever so slightly smaller and it was more cystic.  Basically it means that the Cysts that are inside the tumor have grown leaving less tumor hopefully.  This is the first time that the pathologist has reported any kind of shrinkage in the tumor.  So I said enthusiastically well that means the Chemotherapy is working? And the doctor said that they are still unsure if the chemotherapy is working.  This is a good sign but only time will tell.  

To bring everyone up to date Ellie was once again admitted into the hospital on Wednesday, January 2nd.  Yep she is an over achiever.  Good thing my new years resolution wasn’t for her to stay out of the hospital or that would have been a short-lived resolution.  She had an MRI and wasn’t feeling too well, so they held her Chemotherapy this week and sent us home.  Later Wednesday night she once again spiked a fever and if you are a loveforellie follower you would know that only means one thing, and ER visit. 

As I was trying to pack and overnight bag Jake was crying that he doesn’t want Ellie to die.  Not sure were he has gotten this idea in his head from.  We have never spoken of the possibilities in front of him or Ellie.  We had to calm him down and let him know that she was not going to die.  It was a really rough getting out of the house with Ellie and leaving Jake so upset.  Luckily Dave was able to handle it.  They decided to keep her overnight and which during that time her white blood cell count took a huge plunge.  We have been on a roller coaster since Wednesday, one minute were going home and the next she is spiking a fever again.  Today is Saturday and the doctors informed us that she would be spending the night once again.  This will make 4 nights, 5 days.  Ellie is such a good little girl she has been tearing up because she wants to go home but most of the time she holds back her tears.  It is really sad to me when I see one tear roll down her cheek as she tries to act strong for me.  During the time I have been in the hospital Jake has come down with the flu.  My poor little guy is struggling.  This is a very nasty flu going around.  We all got the flu shot but obviously it doesn’t cover the strain going around. 

Ellie has been in Quarantine since we have been here, basically there are double doors in our room, and no one can come in or out without a full gown, mask, gloves.  Every time they deliver her lunch, clean the room, check her vitals, etc. I cannot imagine how much all these gowns, face masks, gloves are costing us. 

Yesterday was a very busy day here Ellie got to spend time with the Music therapist, the hospital school teacher, Art Therapist and the Child life specialist.  While here child life specialist was here we were talking about how far Ellie has come and I realized that yesterday was the two-year anniversary since Ellie met her.  She was the person who explained to Ellie about here bump in her head and surgery.  I had a slightly emotional moment.  It’s so hard to believe it has been two years of surgery, doctors, and Chemotherapy.  I remember when we had to have three people holding Ellie down to access her.  Now you just count to three and she is ready to go.  I am extremely impressed on how Ellie handles everything she has gone through.  We feel so blessed to have her our life. 

With all the love and support of our family, friends, and community it has made it much easier to handle all the challenges that have been thrown our way. 

So I leave you with this, a few pictures from Jan. 4th 2011 to now January 5th 2013 including the pictures from this visit in the hospital. Our Medical Journey, with a few picutures 

So I was really down in the dumps about going to the hospital this past week.  I was sad that Ellie will once again miss her Christmas Party at school and is unable to see her friends.  But then one thing after another reminded me that we were blessed.

This week brought many tears but not for Ellie.  My tears are for many other families.  I received two messages this week from fellow Brain Tumor friends that they are preparing for the end. I cannot imagine being told its time to make arrangements.  It makes me so sick that any parent would have to go through that.  Also a Brain Tumor camp family friend was told there is nothing more they can do.  Another Brain Tumor camp friend was told the tumor spread. I just don’t understand why the week before Christmas these families get this horrible news.  It actually makes me feel really guilty that I spent time talking about Ellie being in the hospital.  She is home and doing well and we are blessed. 

I just keep on telling myself no we are never going to be that family.  But the reality is that our day could come.  But for now we are going to pretend and pray that it never will. 

And then there was the tragedy on Friday.  I just keep telling myself why; God has enough Angels in heaven and doesn’t need anymore.  I just don’t understand.  It’s devastating.  Once again reminded me how grateful I am that I can hug and hold my children.  As much as this week has brought such difficult news it also has brought out some wonderful Christmas spirited things also. 

While I was in the hospital with Ellie I had Nick Zorn from Oswego ATA contact me and tell me they wanted to buy a big ticket Item for Ellie for Christmas.  I was in shock.  I have been struggling with this for a few weeks now.  When I took Ellie to the American Girl Doll store she looked at the dolls and said Mom I really want this one for Christmas this year.  I unfortunately had to tell her that it was too much money.  (Side note:  Ellie got a American Girl Doll two years ago from Santa, actually Santa won it in a raffle when she was only 2years old and held onto it. Best five dollars Santa ever spent) But then Ellie picked up the tag and said “I know you and dad can’t afford it but maybe Santa can bring it to me” I responded and told her that I thought it was too much money for Santa also.  Ellie being the sweet thing she is said “I know Santa can’t bring it but I’m just going to keep the tag just in case” Needless to say this moment has been on my mind for weeks.  But defiantly after Ellie's 3 ER visits, Tests, and stay in the hospital there was no way of squeezing funds out for a doll.  Luckily Christmas shopping was mostly done before this. Well then the blessing came of Nick Zorn and the Oswego ATA.  He told me they were going to collect money and purchase the doll for her.  I was so thrilled.  I cannot thank the Oswego ATA enough.   But our blessings and Christmas Cheer did not end there.

My Aunt and her friend came by this week with some gift cards for us that her book club gave us.  Once again so warms my heart that our family is in people’s minds and prayers daily.  But no the blessings still didn’t stop there.

On Thursday Morning I was going through the mail and saw a big envelope.  I opened it to a letter from Mrs. Claus and secret Elves.  They are once again are doing the 12 days of Christmas for the kids this year.  Ellie and Jake were so excited that every time the doorbell rings they are now running to the door.  It’s very cute.  Ellie and Jake are like hurry, hurry get to the door all eager and excited.  Then they get there and they are like it’s just the mailman.  But those sneaky elves have managed to drop off packages without them seeing these past two days.  Shhh don’t tell anyone but I have also been really excited when the doorbell rings. J  Thursday night was Game Night/Pizza and Friday was Movie/PJ night.  I posted pictures of the kids playing their new games and watching their movie in their PJ’s.   Please note Sam our dog got involved also. It is so nice to see them both so happy.  I cannot get over the Love and support Lemont has given my family.  I could not imagine living any were else.   I cannot thank the secret Elves and Mrs. Claus for all they have and are doing for our family.  In such a rough week of difficult news we are reminded that Angles live among us and not everyone is bad, there is still good in the world.

This week although was devastating it also brought many blessings and we could not be more grateful for such wonderful people in our life.   

I wrote this on Tuesday Night but am just posting it now.  I will write a new post for the rest of this week and post again this weekend.  And a special Post to our secret Elves is coming also. 

Life without Drama!  What is that?  How does it feel?  I pray daily to have a drama free week and even a drama free life.  But like people always say god doesn’t give you more than you can handle.  And I truly am starting to believe that he choose the right person for this job.

So back to the Drama, it unfortunately did not stop with our visit to the ER on Thursday.  Ellie spiked a fever once again on Saturday so once again we headed to the ER.  Ellie and I spent our entire Saturday repeating all the same tests that they did on Thursday.  Once again they all came back negative.  Just a virus, as I could of told them that a few thousand dollars of tests prior.  But with a cancer patient/Brain tumor patient they don’t take chances and I wouldn’t want them too.  So once again we were sent home.

Oh no the drama didn’t stop there.  We are over achievers for sure. Sunday night right before I headed to bed around midnight I decided to go take Ellie’s fever.  Call it a Mothers intuition but I had a feeling.  Her temp came out at 104.  I once again contacted the hospital.  You could tell the Doctor on call didn’t want to be the one to tell me I had to come downtown again.  So once again we headed to the Hospital Downtown.  I must say it was pretty cool driving Lakeshore drive in the middle of the night on a Sunday.  I only saw one car on the road.  Once again they did all the same tests through out the night.  They finally decided to admit her at 7:00am.  It was a long two days in the hospital with little sleep.  We were thrilled when they decided to release Ellie Tuesday evening.  She was feeling much better.

On the way home we celebrated with two of Ellie’s favorite things.  A Mint Chocolate chip Milk Shake and a Car Wash.  Ellie just loves car washes, you can tell by the smile in her face in the picture.  And it wasn’t too bad of treat for me either. J

Once again sorry I have not kept this blog up to date.  Maybe no news is good news but the more I think about it, I think we have really become settled in our new rolls as a Daughter with a brain tumor.   We are trying to live a normal life.  You notice I say trying.  Every so often I am reminded of the sacrifices Ellie makes as a kid through this process. 

If you know me, you know I rarely sit around and cry about our families’ situation.  Dave and I try to do the opposite by enjoying life and laughing as much as possible.  We try to make the best of the time we do have.  Yesterday was an exception to this.  When we woke up Ellie had a fever of 100.8 degrees (Children with Brain Tumors require a hospital visit as soon as they hit 101). Needless to say I crossed my fingers and hoped we would not hit the 101 markers.  Unfortunately the crossing of the fingers did not work so well maybe I should cross my toes next time, by 10am Ellie hit 101.  I called the Doctor and we ended up having to go downtown to children’s ER.    Before we left Ellie said “why do I need to go down to the hospital, why can’t I go to a regular doctor like everyone else” I tried to explain it to her but she doesn’t understand and how could I expect her too.  When we arrived at the ER Ellie’s pulse oxygen was low.  They did the normal thing (or normal for a Brain Tumor Child) she got immediately hooked up to IV and antibiotics were infused.  After a few hours, X-Rays, CBC blood Culture; Ellie had enough and wanted to go home.  That wasn’t going to happen they had more tests to run before we could be released. They did a virus swap and Urine culture.  Through all Ellie’s crying, poking, and prodding I would call myself a tough mom.  It’s becoming like the norm like I said. 

I finally had a moment of peace to open my computer to hopefully check email and catch up on the day online.  I received an email from Ellie’s teacher that they were having an electronic field trip at school the following day.  Yep the poking and prodding of my little girl, the emergency trip downtown doesn’t effect me but an email that my daughter will miss electronics day started the water works. 

I have a hard time explaining it.  It just I feel like Ellie deserves the world and should not miss out on anything in life.  Don’t get me wrong Dave and I do our best to treat Ellie like a normal kid with responsibilities We expect her to do her homework even when she is tired, she has choirs, and responsibilities. Because of the reality of life is that if Ellie survives this brain tumor she needs to be able to understand what responsibility and reality is.    But this email just set me off.  It brought back memories of Ellie missing her Class Christmas Party the previous year because her counts were too low to go to school.  I felt like a fool tearing up in the hospital after the doctors told me everything came back normal.  I could not explain why I was so sad for Ellie.  I think it was because this Electronics day was extremely important to Ellie.  She has been asked me about every other day when the next Electronics day was.  It is something she had been looking forward too and now she would have to miss it.

I guess we are unsure of how long Ellie has, obviously I pray daily that she will live a complete full normal long life.  Sadly the reality is that Ellie’s life will never be normal.   I am reminded of this every ten weeks when we have an MRI and am reminded that the tumor is going nowhere and as she grows older she will come across several more challenges in life due to the location of the tumor.  But I am so sick of dissapointing Ellie.  The disappointments she faces every time she misses out on a normal kid activity or something special at school because she isn’t feeling well.   I guess days like yesterday I am reminded that it’s pretty impossible not to keep all disappointments from Ellie.  What I find interesting is how Dave and I have two children and we raise both so differently.  As a mom to a non-terminally ill child, I would typically say, “life is full of disappointments and you will be fine.”  I am really trying to find a happy medium raising my children but not sure if I am doing anything right.  There is no parent manual out there (well there are several books but they all contradict one another).  But there is for sure no manual on how to raise a child with a brain tumor. 

The one thing I do have to say is that Dave and I were very blessed with Ellie.  She is one amazing kid.  Every week she wakes up early so that the nurse can come and draw labs, and then she goes off to school.  Then the following day she wakes up early so the in home nurse can give her chemo, and once again she goes off to school no complaints.  I wish I could take credit for how awesome she is but I think its all her.  We are very blessed.

P.S. We were sent home yesterday with all tests came back normal, so we thought.  I received a phone call from the doctor that they found some bacteria growing in Ellie.  They are hoping the antibiotics they gave her yesterday will take care of it.  But we need follow-up tomorrow.   We need to follow her closely to make sure that it knocked the bacteria out.  But for now we are feeling blessed that we are able to sleep in our own beds.