Mommy Wrote: February 18, 2008

So I am going to try and make this as short and sweet as possible but I like to ramble on as most of you know.  Well  our move home has fastly approached and I will be there in about a WEEK!!!!  I am excited but also have a feeling that maybe this isn't what we should do.  But if you know me, I worry about everything  all the time!  I know being around FRIENDS and family is very important to Ella, to us as a couple, and just for everyone involved sake but Jamestown wasn't the place I "planned" on living!  Then again a plan is just that a plan and you can never follow an exact path in life!!  Another reason I have hesitation is HOSPITALS and DOCTORS in the Western New York area.  It just seems like we are getting top notch care here.  I mean everyone here is fantastic: the nurses, the doctors, the familys, the other kids, the atmosphere, you name it!! It has become a second home for us.  I also believe that if we were not at All Children's Hospital in St. Petersburg, Florida that my daughter wouldn't be where she is at today!!!  So with that said, We are NOT going to Buffalo Children's Hospital and Roswell Cancer Institute!!!!!!  I wasn't a big fan of the city of Buffalo to begin with so now I really don't have to deal with it or even see it now.   This hospital refuses to do STEM CELL TRANSPLANTS in children under the age of 3 and refuse to make an exception for Ella.  I understand that that is their policy but when another Doctor calls and explains Ella's chemotherapy treatment and that she need stem cell rescue because it is WORKING for her then??????? I don't know why they don't do it, but it is possibly b/c this is VERY new development for cancer patients, but they use it allllllll the time here with GREAT results, look at my daughter.  Mind you the stem cells are harvested from Ella nowhere else, so it is not a huge controversy with this type of stem cell usage.  Her stem cells go back in her body and start producing anything that was wiped out during her HIGH dose chemotherapy.  So after looking at all options we have decided upon the University of Rochester Medical Center.  Also called Strong Memorial Hospital with the children's wing called Golisano Childrens Hospital.   Yes, it is 40 more minutes away but I will do whatever it takes for my daughter to continue on this treatment that has been the ONLY one to stablelize her tumor!!!  Dr. Stapleton seemed very pleased with our new Doctor.  Our new Doctor is Dr. Korones.  He seems great.  He called me at home while he was driving around Rochester and joked around about moving from Florida to New York.  He seems VERY interested in Ella's case since it is so unique.  He says he has studied Ella's type of Cancer (High Grade Astrocytoma or called Giloma) and has even studied the unique and out of the box Chemotherapy that Ella is receiving.  He said that he is amazed at what Dr. Stapleton has done and promises us that she will ALWAYS be on his list of people to call when making decisions in Ella's case.  That right there took 50lbs off my shoulders.  So right now I feel good, still worried about insurance but I will get that taking care of....We only have a week left to enjoy this beautiful 80 degree weather before we go back to cold, snowy, no sun for ages, Jamestown, New York!!!!!  But, we only have about a month then spring and summer!!!!  All I know is that Summer and Fall in New York is awesome!!!  We can't wait to see all of you and to even meet many of you and become greater friends!

Mommy Wrote: February 13, 2008

With the move home and all these changes taking place a lot has been going on.  Things are getting difficult and sometimes feels as though I  have nowhere to turn.  Jason and I are doing are best but of course tensions are running high between us.  It runs high between any couple with a child let alone a sick child.  This is testing us as a couple in so many ways.  I tend to look at other couples and I don't know if it is jealousy or thinking I know more about life.  Either one isn't completely true though.  Yes, I am jealous of people my age doing the "normal" things in life but yet I look at them and wonder what do they really know???  Are they as wise as me and seen the things my eyes have seen?  Are their relationships strong enough to last anything life has to throw at them?  Are they strong enough to watch their child in pain?  Is their relationship strong enough were no matter how much fighting, tension, lack of sleep they get that they would be able to make it through?  I don't know!  All I know is that this is HARD!!!  I am lucky to have Jason next to me.  He is an awesome Dad who loves his daughter dearly and watches over us.  We all have our faults but the question is:  During the hardest part in your life, can you work through you differences anf faults for a greater cause?  I know that we have thus far and will continue to.  Ella is the glue that will always hold us together.  Here is something I wrote one day while I was down and out.  I thought I would share this with people since some of you who read this go through what we are going through. 

Mommy Wrote: (November 25th, 2007)

So as most of you know by now, we didn't get back good news on Nov. 20, 2007.  We went in to see Dr. Stapleton (love her!!!!!) and you knew it wasn't good when she came in and said she needed to talk to us for awhile.  My heart sank but our worst fears were confirmed:  Her tumor is growing.  It is growing in her spinal column (is that how you spell it for that use???) where they first removed it back on June 15, 2007.  This reduces her risks which was a mere 30% to begin with.  To say the least this past holiday was difficult but we tried to have a normal holiday and make memories.  So now we are facing an even bigger evil.  Her chemo is going to be A LOT more aggressive to say the least.  This comes just as we thought we were going to go into the less rigorous phase of chemo but we can't control what happens.....  This chemo is so toxic that she is required to have 3 bathes a day and linens changed frequently, this is done b/c the chemo just comes out of the skin.  This chemo will attack her white blood cells, hemoglobben, platlets, immune system, you name it!  So in order to bring her "counts" (includes: white and red blood cells, hemoglobben, platlets, etc.) back up we must boost her system with GCSF.  But this time, that won't be enough, that is why they are doing her STEM CELLS.  As of right now Ella is healthy, eating, drinking, playing, talking, moving her legs a lot, sitting up more, on a schedule basically things feel "normal."  What we are doing right NOW is giving her MORE GCSF (even thought she is healthy) so her bone marrow (which produces most of the cells to bring her counts up) will over produce cells and spill into her blood and her blood will then be harvested and picked apart to remove only stem cells and everything else is put back into her (run on sentence.... I know!!!) .  The stem cells are then collected and froze for future use.  The stem cells will be used after the harsh doses of chemo are over with along with GCSF in order to boost her bone marrow and cells back to health again.  B/C chemo kills all  they will boost her with her OWN cells to bring everything back up to "normal" health just in time to start the next round of harsh chemo again and the cycle starts over....With her body constantly being attacked Ella is at risk for infection so hospital stays are likely.  

So we go tomorrow for TWO surgeries ( I will explain the other long part):

1.)  Place a line in her neck in order to harvest her stem cells.  It will have two ports, one will have blood coming out while the other will have her getting back her blood.  This will be taken out of her neck once we know we have enough stem cells to go through 3 round of this chemo treatment.

2.)  Ella is getting a G-Tube put in or a feeding tube in her stomach.  I as a parent have been worried about Ella not eating during chemo and not gaing any weight ( 15lbs since JULY!!!).  Well like I said I thought we were going into a less rigorous round which would enable Ella to eat more and basically keep up her weight.  BUT... that isn't so and this harsh round won't be any different, Ella will not have an appetite and will have nausea.  For protective measure, Dr. Stapleton, Jason and I think we should go ahead and do it b/c she is healthy right now and we don't want to have to do another surgery, more anestheia (spelling), etc.  WE think this will help her keep her weight up and continue to receive chemo.  It is a scary thing to think about b/c it's a feeding tube.  It doesn't sound good and no we don't want to have to do this but as a parent you are faced with THE most difficult decisions.  Ella will still be able to feed by mouth if she can or by the tube.  But as I said Ella is a risk for infection and having this increases those risks.

As you can tell, this week has been hectic trying to get things together in the midst of a holiday.  We are still trying to move home and Dr. Stapleton is being very helpful with the move, calling doctors.  She even encourages us to move home and be around family.  It looks like Buffalo Children's Hospital which works with Roswell is where we will go.  I have mixed emotions going through me about the move home but I believe it will be a chance for US as a family to get a fresh start.  Sounds weird I know b/c we are moving home and usually you move away to do that but I feel different.  I see Jamestown in a totally different light.  It is small, very depressed looking town but it is a small town and a great town to grow up in.  I never imagined raising my kids away from my family.  I want my children to know their grandma's and grandpa's, cousins, aunts, uncles, etc.  It is just a comforting feeling to know you have people who really care and people you trust whole heartedly.  It is funny b/c we moved away to get away from small town crap but now that stuff means more.  I will say that Jamestown isn't a great place for singles ages 18-30 but for a family it is a great place.  I just look at my sister and admire the beautiful life she has created in that small town she once said she would NEVER live in.  Jamestown is home and home is where the  heart is.........