Ellie had a fantastic weekend at State for Cheerleading but sadly began feeling tired and sick Sunday Night.  I kept her home on Monday thinking a day of rest would do her some good and hopefully give her a reset.  Unfortunatly she just seemed to get worse.  We went to the Doctor yesterday to find out that once again she has Strep throat, 2nd time in a month.  We where on apt 3 of the day (MRI) when Ellie broke down in tears.  She said "I'm tired of all this"
 I responded with "I know but you will feel better tomorrow once your antibiotics kick in"
She then Continued on to say "No its not going to be better, we have to go to the hospital tomorrow too. Im tired of how my life has been so tough since I was 6 years old"
In that moment I wanted to swoop her in my arms and cry with her, tell her its ok we dont have to go to the hospital tomorrow. Unfortunatly as a mother that is not an option.  I just told her "I know its tough but we have to do this, and we just need to suck it up and make the best of it" She didnt like my response, being a Mother is the hardest Job in the entire world. Once she went into the MRI I broke down and the nurse that sees her every other month for MRI broke down.  Yesterday I was defeated, even this morning and through the first half of the afternoon I felt defeated.  
I felt sad, exhausted, and like I didn't have the strength to fight on.  
Today at the hospital, I handed over all the new medication Ellie is now on to the Doctor and his response was "wow these medications are allot of money, wow even the generic is expensive."  I never look at the bill coming out of walgreens I just know that we pay out of pocket allot for medication a year but looking at the fees would just throw me over the edge, there is nothing I can do about the medication costs, they are a must and are needed so whats the point. . When the doctor was saying how expensive the costs of meds are I felt like throwing my hands up in the air and giving up, but before I had a chance,  he said  "lets go look at the newest scan."  We walked in and as he was pulling it up and said some sweet much needed rejuvenating words "Her tumor looks a tad bit smaller. I am optomistically happy"  Did I hear that correctly it actually seems to be working?  The rashes, tiredness, crankyness, Doctors apointments, and (My personal favorite) Doctor Bills are all worth it to hear those simple words "It's Smaller."  (Doctor kept on stressing ever so slighly smaller) He had no Idea how much I needed to hear those words today of all days.  I was one Doctor Bill, one crying child, one little thing away from a straitjacket and padded room.   No after labor Day white for me (for the time being)  Sometimes when you feel defeated and start questioning your beliefs in God he shows up and that would be my day today.  Thanks for showing up for me, you must of known I was on the edge and needed a pick me up.   Feeling like a new person tonight but need a nap.  Glad to have nothing for the rest of the day. 

So this week has been some what of a roller coaster when it comes to Ellie’s Meds.  She was supposed to go downtown on Wednesday to begin her study.  As I was walking out the door on Tuesday night for football and cheer her Nurse for her case called.  She informed me they were in the middle of Brain Tumor Board and she and Dr. Stew stepped out because there was a problem getting the medication from the study contortion.  Needless to say they did not have the medication in hand and all the tests she did were only good for a week.  Luckily when doctor stew walked out of the meeting he contacted the study contortion and advocated for Ellie so she would not have to retake any tests.  With that being said I received a phone call Wednesday letting me know that a carrier would be delivering the medication to the hospital at 11:30am on Friday and we had to be at the hospital.  Tonight around 5:30pm Doctor Stew Goldman called me to let me know that they were not sure if it was going to arrive tomorrow and basically I will be on call.  As soon as Doctor stew calls me I will have to head to the hospital tomorrow unless it doesn’t make it then we will have to regroup the plan. 
 
Ugh now here is the scary part as a mom.  Ellie's tumor has not stopped growing and everyday chemo gets put off the tumor enlarges.  So today I felt like she was absent minded.  Is this because she was at school early this morning and did not get a goodnight sleep or is it the tumor.  God Only Knows.  Please pray that we get a call tomorrow and she can begin Chemotherapy.  I have been getting texts and phone calls asking what the status is so here you go we are “on call” waiting just like a doctor.  We did set up Ellie’s Locker today for 7th Grade.  That’s crazy she is in 7th grade. 

So yesterday was a difficult day.  We spent the day from 8:30am – 4:45pm doing tests and reviewing the 40 pages of information on the study with the doctor.  As we went over these forty something pages my brain could not help but wonder and think about what the hell am I signing.  There are two pages of possible side effects, some as little as Tired and Dirrhea but some as serious as Blood Clots, Heart Attack and permanent liver Damage.  Any normal parent in their right mind would say hell NO she’s not going on these drugs.  Unfortunately, we are not normal parents and these are not normal circumstances.  We had another MRI Tuesday and once again the tumor had grown.  So we are moving forward.  As the doctor put it “I expect Ellie to live a very long time and I am going to do everything in my power to ensure this happens.”  I have 100 percent faith in Ellie’s medical team.  We have seen them from once a week to once a month over the past 5 years so they are like family.  I have been told from 2nd, 3rd , and 4th Dr. Opinions all around the country that we are in the best hands we possibly could be in for the type of brain tumor Ellie has. Please keep this in mind when you think of speaking to me about treatment and where Ellie should be treated.  I have Ellie’s best interest in heart and I more than anyone in this world want her to survive this. 
 
So with this study we will be going downtown at least 2 times a month possibly more.  There are side effects of low red and white blood cells which will put her at risk of being in the hospital more often then not.  She will have to do monthly tests to ensure she is safe and her liver is good.  This drug has been used for some time in adults this is a phase 2 study so no drug is perfectly safe but its safe enough that its worth the risk.  On this study she will be taking Chemo at home once a day for two years.  So yep tack another two years of Ellie’s life of taking chemotherapy.  By the time she is done with this study she will be entering her Freshman year in High School.  Its Crazy to think she started in 1st Grade her first full year of school and will with no doubt be doing chemo through to at least Freshman year.  So yep her chidhood has officially been stolen from her.  But in the same breath I’m grateful she is still here.  I used to be allot more positive about our situation but after so many years its just draining.  I don’t and can’t understand why.  I did hold back tears yesterday as we went through the paperwork wondering if Ellie will ever get a break.  I have gotten tons of texts and emails last night and this morning asking what the scoop is.  I do know there are tons of people praying for her and God’s got to eventually answer one of those people’s prayers.  I like to think he is just over worked and over whelmed and just hasn’t gotten to it yet.  The prayers are on the bottom of a stack of papers on his desk.  I think the most difficult part of all this is Ellie just wants to be a normal kid.  If you know anything about Ellie she is very introverted and quiet like her dad, unlike me I’m very loud and outgoing (some people might call that obnoxious).  That being said I have had tons of offers of what people can do for us.  I really don’t know.  Yes, this is a financial struggle and more than anything I would love to say let’s have a huge fundraiser to help us but at the same time I can’t do that to Ellie.  I cannot draw more attention to her.  She is finally feeling a little more comfortable in her skin and I feel like this might set her back.  So we are in between a rock and a hard place. I am very grateful to the principle of Ellie’s School that offered to raise funds through a walk but unfortunately once again that would bring to much attention to Ellie.    That was a very nice gesture but she just wants to be a normal kid and more than anything in this world we want to give her that.  We also do not want to be a charity case either, we know there are plenty of people out there that have it so much harder then us and they struggle so much more. If that means Dave and I need to struggle, then we struggle and its worth every penny. 
 
I will keep everyone up to date as things move along with this Chemotherapy.  Sometimes no news is good news.  She starts Wednesday as long as she passed all the tests from this week. 
Thank you again for your love and support through this journey!

Our past few months has been nothing short of a sad TV Drama.  I have not written on this blog in sometime.  I use this blog almost as therapy.  Its very difficult to speak of Ellie and all she has gone through in these past 5 years.  But I have realized over the past month that I need to keep everything up to date on here because if not I have to relive it all over and over as each person asks.  It is so much easier to put it in the world so that everyone can read it and be up to date.  So that every time I see someone they don’t ask “how’s Ellie?” So before I get to the past month, let me backtrack for those who did not know.  Ellie completed her 1585th Chemo dose on April 25th, 2016.  At this point we went through the end of Chemo celebration for the second time in 5 years.  We told Ellie along with ourselves that this was just a break.  As much as I told myself that this was a break, there was a small piece of me that was thinking that maybe this would be it.  Or at least I felt we had a long break maybe even a year.
 
So now onto my July of hell as I like to call it.  Sounds like a good name for a TV Drama don’t you think?  It actually began in June. So maybe “Cancer Sucks”.  In June my very healthy and active grandma on my mom’s side of the family went for a Colonoscopy and they found a large mass.  If you know my grandma, you would know she could out walk and work any young person.   So with that being said, I felt like she was going to have surgery, they would remove it and we would be done.  Maybe some recovery time.  My father had colon cancer over 12 years ago so we have been through this before.  Well not that easy in our family drama, after some other tests the doctors discovered it had spread to her lungs and liver.  Grandma was given 6 to 7 weeks to live.  When I got the news I was in denial.  No way my Grandma was going to die in 6-7 weeks she was still so healthy and had at least 10 more years of life in her.  My grandma, Ellie’s Great Grandma slowly got worse over the next 6 weeks.  My Mom and Sister had to attend a work convention in Little Rock, AR.  So I was in charge of caring for my grandma during this time.  We were caring for my moms Dog and Sisters dog as they were gone out of town.  After moving furniture at my grandmas so that the hospital bed could be moved in we returned home to find that my Moms and Step-dads dog had passed.  We as a family where devastated. 
 
Next day grandmas Hospital bed arrived.  She refused to sleep in it though.  She slept on the couch at night.  (we believe that 6 months prior she watched my grandpa deuterate in a hospital bed and she was not going to let that happen).  Every time I walked in to check on my grandma I would ask “How are you grandma?”  Her response would be “I’m better than you!”  Then she would offer to get up and get me something to eat.  This my grandma who is in pain dying from cancer.  I would always ask her if she was in pain and she would say “not really.”  Well the day after my mom’s dog passed I walked in and asked my grandma how she was doing and her response was “I’m ok, can you move the morphine from the garage fridge closer to me in case I need it.”  At this point my jaw dropped and I thought I was going to loose it.  I was on the phone with my mom at the time and my mom’s response was “oh, that’s not good.”   The doctors told my mom that once my grandma needs morphine it would only be a matter of hours.  My mom rushed home immediately and was home the next morning thank goodness, I could breath a little with someone to share this stress and pain with.  My mom did my grandma’s hair and my grandma looked like a whole new lady smiles and everything. 
 
I wish I could say the same for me.  I felt a huge burden was lifted off my shoulders.  But you all know this would not be a good TV Drama without more drama to follow.  On July 1st, 2016 I received a phone call from Ellie’s Neuro Oncologist informing me that the scan she had earlier in the week showed growth of her tumor.  I was in shock; I know that it was a possibility of growth but really only 2 months.  That is all we got out of two years of everyday chemotherapy.  How is it fair.  So I ask him the question “what now?”  He told me that he would contact me on Tuesday July 5th once he had a meeting with the entire brain tumor board to discuss what the next steps would be.  This was the longest weekend for both Dave and I.  We did our best to enjoy the 4th of July festivities, this was harder than usual because I was keeping a secret.  The weight of the world was on my shoulders and I was keeping it from my family and friends.  We did not want to ruin anyone else’s weekend with this sad news.   So Tuesday rolls around.   I went o visit my Grandma and we spent some time together in the morning.  Then I left for lunch and came back.  When I arrived back grandma was in the hospital bed not speaking.  I knew she could hear us though because while mom and I were talking every time you know grandma would have something to say you would hear a noise out of her.   Mom had to leave to do some work so I sat with grandma by myself.  As I sat with grandma I received a phone call from the Ellie’s Doctor.  he was calling me on his way home to give me the options the brain tumor board discussed, and why they felt some are not options at all. 

1. Option was Radiation but Ellie’s brain is still developing and radiation would cause severe brain damage at this point. So that was out.
2. Brain Surgery was a second option.  Ellie’s tumor has a major artery running through her tumor so it would be extremely dangerous to remove some of the tumor.  So that is out.
3. This being the best option, a new Chemotherapy study out of San Francisco.  But it was unclear during this phone call weather Ellie would qualify because there was a clause that if you went on this study you couldn’t do the past study that was effective on the tumor while she was in treatment.
4. Last option would be to go back on the chemotherapy study she was on. She is unable to remain on this long term it would be a temporary fix until we find another study that works. 

 
So at this point he told me to we would meet in the office on July 13th with the neuro surgeon to discuss all the options and decide a plan from there.  That night I left my grandmas house and said good bye.  I had a feeling that Grandma was going to leave us that night and she sadly did.  My heart is still breaking to this day that she is gone.  I’m in denial. I know how fortunately I was to have 4 grandparents alive untill this past year where I have lost three of them.  Sadly, two of them quickly to cancer.  We all were devastated. 
 
 A few days after this we sat Ellie down and informed her that her tumor had grown and she would have to go back on chemotherapy.  Ellie did not have the reaction I expected she nonchalantly said “Oh man more doctor’s appointments” and continued to say “ok can I go play now.”  I was shocked and pleasantly surprised.  If Ellie the one that has to go through this all can be ok, then I should also.  Ok we are moving forward.
 
The 13th finally came along and as we walked into the hospital Ellie had a melt down.  Not the normal kid melt down.  It was a pre teen melt down.  She was yelling she didn’t want to be there.  We spotted her nurse in the parking garage and she wanted nothing to do with her.  She wouldn’t let the neuro surgeon do his exam.  She was done, and how could I blame her.  I was done too.  I was especially done when I saw the MRI Scan and discovered that the tumor was almost as big as it was two years prior to chemotherapy.  I felt defeated at that point.
 
At What point in life do you throw your hands up and say I give up!  Never, when its your child.  It’s easy to give up when its you suffering but your child needs you and some unexplainable power comes out of a parent that makes them continue on and help their child Fight on!
 
 That being said after meeting with the doctors for hours, signing paper work and going through the options. Here is our plan. 
 
We are sending a tissue from Ellie’s tumor to San Francisco where they will test it for a mutated gene.  If Ellie’s tumor has this mutated gene, then she will qualify for this study as long as there is a place for her in the study at this time.  There are only 2 slots left so we are praying that she qualifies and that there is a place for her.   If Ellie’s tumor does not have the mutated gene, then we go to plan B.  She will go back onto the chemotherapy study she was on until a new study comes up. Ellie will go back in also for another brain scan in a few weeks.  They want to determine how aggressively fast the tumor is growing.   So right now we wait in limbo.
 
I think limbo is the hardest place to be!
 
I open my heart on this blog and I only ask of one thing from all the supporters of Ellie.  When you see our family around town or at family events.  Please do not let this tumor define our family.  It’s exhausting talking about this tumor.  It has been 5 years and there is so much more to our family and to Ellie than a tumor.  I know you all are loving and supporting us and that is fine to express that but please no questions.  I promise when I have answers and am ready to share I will share it with everyone on this blog.  Or I might choose to speak about it. 
So here we are moving forward.  This tumor has taken Ellie’s Childhood away and is working on taking her pre-teen years away.  As her parents we do our best to ensure she lives a normal life just like all the other kids.  Please help us with this!
 
So until Next Episode of “As the world turns in life with cancer” 
 
Coming soon….

5 years ago today my body became crippled with pain when the Pediatrician told me Ellie had a brain tumor and needed immediate surgery to save her life.  I look back and wonder how I got threw these past 5 years.  It has been a roller coaster and I could not be prouder of how strong Ellie has become.  Today Ellie had an MRI and the nurse did the whole 1,2,3 before accessing her and she did not blink.  5 years ago, we needed 3 nurses, myself and my mom holding Ellie down as she was kicking and screaming the entire time.  We also had to put her under for an MRI.  Ellie now walks in does her thing and walks out like its nothing.  I also have come a long way.  I went from using my showers as my crying room to actually relaxing and enjoying showers.  I think I lived day by day five years ago and throughout the years I have gone from living week by week, to Month by Month, and now I live 10 weeks by 10 weeks.  This may not make sense but the only time I get nervous or scared is when we have an MRI review which is about every 10 weeks. So this is my 10-week mark where we review Ellie's MRI and see if we continue down this path that we have been on for over a year and half. 
Ellie has about five more months on this Chemotherapy treatment and as it gets closer I get both excited and nervous.  Wondering what the next chapter of our life has in store.  I’m pretty sure Ellie might be on chemo therapy the rest of her life because anytime she has stopped chemotherapy her tumor has grown, but there is always the hope and wish that the chemo therapy has done its job.  Only time will tell. So raise your glasses to Ellie we are celebrating 5 years of living.  I also thought I would attach one of the very first posts I put up on Facebook after Ellie was diagnosed.  Wish we didn’t end of being the 30%, but I know god has a plan.  This post is from the Day of Ellie's 1st Brain surgery. 
 
January 05, 2011
She has woken up and had an allergic reaction. I was strong during the surgery but now knowing that we will do it all again scares me. Good news they are 70% sure that it's not cancer but they won't know for sure for three days. Dave has been a rock through everything. I think I hit basket case tonight. It looks like it's going to be a very long night in the ICU. Thank you for everyone’s prayers. It means the world to me. We are just a step into a full journey.

On Jan. 4th four years ago I got the bone chilling, heart dropping news that Ellie had a brain tumor and needed immediate surgery.  It’s so hard to believe it’s been four years of brain surgeries, MRI’s, Clinic Appointments and chemotherapy.  I will never forget the three weeks I spent in the neuro ICU at Children’s where kids came and left.  It was so hard to watch the kids walk out and parents thrilled that the tumor was completely removed.  It saddens me to say I was and am still jealous of those families.  I will never forget the many 1am, 3am, and 5am’s I spent in the hallway of the hospital crying just trying to make it threw to the next day, hoping and praying that our journey would be soon over like many kids before her.  Sadly that was not our path that God put us on. 

 

We try so hard to make sure Ellie lives as normal as a life as she can possibly have.  But I am often reminded that her life will never be normal and forever she will have to fight this brain tumor.  On Jan. 5th (Today) we celebrate her 9-hour surgery 4 years ago.  Although I wish the outcome were different I would have to say I am extremely pleased and grateful for every day we have with Ellie.  I will never forget crying to the neurosurgeons to just please bring my baby back to me before they took her to surgery.  And he did!  Although she will struggle with learning and developmentally disabilities for the rest of her life No one can take her sweet kind quiet temperament away from her.  Ellie will forever be our Ellie.  Even though we have gone through moments when we were really unsure if she would be our Ellie again, every time she has pulled through and came back to us. 

 

Today we took her out to dinner to celebrate four years and as she looked up at the waitress and placed her order in a very clear loud voice I had never been so proud of my Ellie.  So I raise my glass and cheers to having Ellie for these past 4 years when we were not even sure if we where going to get a week with her, let alone another day.  Life is a roller coaster and we are trying our best to enjoy the ride.  I am sure we have not hit our lowest of low or our highest of high points with Ellie and there are many rides ahead of us.  Loving Ellie today and so proud of how strong and amazing she has been through this journey called life.  

So many people have been asking since my last post about a week ago what the status is on Ellie’s Chemo Study.  Ellie was accepted into the study so we were able to begin last Wednesday her first chemo treatment of 1,460 treatments over the next two years.  Everything went really well and so far she is handling the chemo like a champ.  Only complaint is that she is really tired.  The nurses and doctors did warn us that it will take a week or two before any side effects appear.  The way the protocol works is that we give Ellie Chemotherapy twice a day at home 12 hours apart.  We then go down to the hospital at least once a month. The hardest part of this chemo is Ellie is not aloud to eat two hours before her dose and one hour after her dose.  This makes the morning before school a little rough.   If you know Ellie she is a very slow eater and needs to eat often or she gets cranky.  Ellie did have a complete melt down yesterday because she was hungry.  I think it’s going to take some time to get use to the eating schedule.  We either are eating supper early for us or supper late in the evening. 

Another question that has come up is about the study and the fees.  Sadly we don’t get paid to do the study.  The nice thing is that the medication is covered under the study.  But they do not cover the tests and the processing of the medication.  But any savings we will take it.  We are just grateful Ellie was one of the seven chosen in this hospital to participate.  We feel this is the best medication at the time for Ellie’s life.  So we are moving forward and not looking back.  Fingers crossed that this works and buys Ellie more time.  At some point we are going to have to do radiation but we are buying time hoping we can hold off until most of her brain is developed.  What many people don’t think of unless you are going through this type of cancer is that radiation can cause brain damage and many more problems.  So the doctors will only do this as a last resort type treatment. 

Lastly many people want to know what is going on at our house.  Well the back of our house had a room that spanned the entire house that was not safe.  Without going into detail the walls started to cave in.  There were other dangerous elements that made it not only dangerous for us to live there but dangerous for Ellie’s Health.  So we had to get a loan and take down the back half and rebuild.  We luckily have great friends that are contractors who did everything in there power to get bids down.  They have been going above and beyond.  There have been many bumps along the way that have cost more but we have no chose but to move forward.  Ellie is so looking forward to being back in our house.  We had to move completely out during this process for not only Ellie’s Health but also Dave and Jake’s asthma couldn’t handle the dust.   We are hoping to be back in soon.  Ellie really wants to get back in her room.  The nice thing is that we are living with my sisters, which is less then a mile away so we are constantly at the job site being able to see the changes on a day-to-day basis.  Fingers crossed we pass our inspection on Monday and we can move forward finally. 

So yep nothing but drama for the Cuiching but I must say I really think we do handle these difficult times as a family like no other.  We have an amazing support system that helps us through all these ups and downs.  Without the support and love from friends, family, and our community it would be much more of a struggle.  Thank you so much for your love.  We wish you and your families a fantastic and blessed Easter.   

So I wrote this part of the blog Entry on March 20th the Day after we found out.

About 11am on March 19th I got a phone call I thought I would never get.  Dr. Goldman Ellie’s lead Nuerologist Oncologist left me a message saying “This is Dr. Goldman, give me a call when you get a chance.  I want to discuss Ellie’s MRI with you.”   You want to talk about your heart dropping down into your stomach.  I was so grateful to have my friend in the car with me at this moment.  So I quickly call him back.  In 3 years I have never gotten a phone call personally from Dr. Goldman.  Most of the time it is Sandy his nurse practitioner.  So I knew it could not be good.  So Dr. Goldman picks up and tells me “I have to call you back in 5 minutes.  Not Stew 5 minutes (which means 20 min) but 5 minutes.”  It ended up being about 10 minutes before he was able to call me back.  It was an incredibly long 10 minutes.  My friend Wendy and I were in the process of driving to Sam’s Club to purchase all the food for the school fun fair.  So by the time he called me back we were already inside picking up food.  I guess every time I am Sams club and I pass the Soda aisle I will have the heart dropping stomach-hurting moment come into my head when Dr. Goldman told me that Ellie’s tumor had grown and the Chemotherapy had not worked. 

Now what I need all of you to understand is I have stayed off of this blog because we have been enjoying Ellie and all her accomplishments.  She is one of the most amazing kids.  We signed her up for Lemont Hornet Cheerleading and she was amazing.  When we signed her up I did not expect her to compete.  But she did and they won 1st place at every competition.  I was exciting and amazing to watch her and all she had accomplished.  Ellie has been competing in taekwondo tournaments and doing better every time.  She started 4th Grade in August.  Yes 4th grade so hard to believe she began this journey in 1st grade.  How much she has grown into a young lady.  Even the other day I was talking to my family telling them about something Ellie was going to do and Ellie spoke up and said “ Um did you consult me on this?”  Cracks me up how much of a voice she has gotten since Chemotherapy has stopped.  Even last week we got her report card back for this semester and she earned Strait A’s.  She is only behind her class in Reading and Math and this is missing tons of time in the past of school.  Every day this child amazes me with all she has accomplished after having 3 brain surgeries, 3 years of chemotherapy, and tons of obsticals. 

This news from doctor Goldman came as such a very hard blow.  How am I suppose to tell her its time to going back to being sick and sitting in hospitals for endless hours.  As Doctor Goldman was explaining all the information the only thing I heard was Charlie browns mom “whe wha whe” for a minute.  Then it was time to figure out what the next steps were.  Doctor Goldman then went on to explain our options.  Option 1:  Send out a sample of the resected brain tumor from the past surgeries and see if Ellie has a mutated gene, which would qualify her a trial Chemotherapy, which is her best chance.  But is in Phase 2 of a trial but has shown some good results so far.  I believe it would be swallowing pills every day, twice a day and going to the hospital once a week. Option 2:  Every other week going down to children’s for full day infusions of a chemotherapy.  And if neither one of those work our final option is Radiation.  This is a last resort because Radiation can cause severe brain damage and many issues with Ellie’s learning etc.

So we are started with Option one.  Now many of you might ask why am I putting this out here three weeks after finding out about the growth in Ellie’s tumor.  First we have a few weeks before we even find out if Ellie qualifies for the Chemotherapy Trial going on.  Also if you know Ellie you would know she dwells and gets her self-worked up on things such as shots, hospitals, and doctors way before we even are doing any of this.  But the main reason is my parents decided months ago to give Ellie her true Make-A-Wish.  When Ellie was 6 she wanted to go on a cruise with her cousins and this was her wish.  Sadly at the time her cousins could not go on the cruise because my sisters baby was too young.  Make a wish did take Ellie and our family on a Dream works cruises.  And I have to say it was amazing.  But Ellie was sick from Chemotherapy and she was sad her cousins could not come.  So when Ellie was released from doing Chemo my parents thought this would be a perfect time to take her on the same cruise with her cousins.  So we are leaving for spring break in two weeks and Ellie is getting her wish.  We just want her to enjoy the cruise and have an amazing time of her life with no worries.  So Dave and I decided that we would keep it to ourselves.  Not even family knows, we do not want anyone saying something to Ellie.  This was her time to enjoy life and not dwell on what is to come.  She deserves this awesome vacation with no worries, energy and tons of fun. 

So here we are about to embark on another Journey.  A Journey that I am sure will have its ups and downs.  By the time I post this I am hoping to have the results from Dr. Goldman weather Ellie does qualify for the study.  Once again I am sorry I have not shared my journey over the past months but we were enjoying life and pretending there was no such thing as a tumor.  I guess its back to reality.  This is my baby’s life.