Things havent really changed these past couple of days.  We have just been hangin out and watching Sky's counts.  Skyler's platelet counts are still extremely low.  The only good that came from taking his spleen out was that it made room for his huge liver.  The reason his belly was so huge was because his huge liver and huge spleen were all squished in there and the only room for them was outward.  Now with his spleen gone, his liver has basically taken up his whole belly.  Its crazy to see because it is so prominent.  We havent  been able to figure out why his platelet count is always so low, but we have figured out why after receiving units of platelets everyday it doesnt make his numbers come up.  It turns out that his body has built up alot of antibodies to all these platelets.  Because he has received so many from so many different donors, his body is now saying those arent mine so its destroying them.  The oncologist said he has never seen a test come back that high before, meaning he has built up ALOT of antibodies.  So the plan now is, the blood bank is going to start screening his platelets (which they dont normally do) for platelets that are most like his own.   That way his body wont destroy them as fast.  Hopefully this will help his counts come up higher and stay higher for longer.  I sure hope this works.  I hate seeing a platelet count of a whoppin 3 everyday.  A normal platelet count is 150 to 400 by the way.
They also did some testing on his liver.  They think he still has fungus deep down inside of it which is making it not function right.  Its considered dysfunctional right now instead of failing.  Thank goodness, because if he was in liver failure he would not be a candidate for a liver transplant because he has cancer, and they also wouldnt let me give him part of my liver.  So lets pray hard that that doesnt happen.  That would be devastating.  The great thing about livers though is that they can regenerate themselves alot of the time, so if his body gets better then they think that his liver will too.  Yay!  Its nice to finally have a little bit of hope in that aspect.

Skyler's incision has been healing and he hasnt complained of having alot of pain there so we have been able to get him up in his wheelchair.  Its been so nice to see him out of bed again, and I bet it feel so nice to him to be able to actually sit up.  I was even able to hold him on my lap which I havent been able to do for so long.  It was wonderful!  I will never ever again take for granted the smallest thing like being able to hold my son.  Everything was right again for those 30 minutes that he was in my arms. 

 It makes me so happy to see him sit up in his wheelchair like this.  But look at those ribs!  He is just skin and bones now everywhere but his belly because he has lost basically all his muscle.

He was even able to eat a Popsicle!  You should have seen the smile I got when I gave it to him, it was awesome

This was the best thing ever.  I just love this boy to pieces!!

Thank you everyone for all your thoughts and prayers.  It means the world to me that everyone has been so thoughtful and sweet and so supportive.  I can feel the love and prayers and it has helped me tremendously, especially these past couple of weeks because they have been so rough for me.  Skyler and I are so blessed to have such great family and friends.  I also want to say thank you to everyone who has donated or looking into donating blood products.  This makes me so happy!!  Thank you!

Free For You, Worth Everything to Them

Free For You, Worth Everything to Them

This Christmas, here's two relatively simple, FREE gifts you can give your fellow man:

1. Get registered in the bone marrow donor registry: http://www.marrow.org/JOIN/. There are many people who need a life-saving bone marrow transplant, but who don't have a match. Last month we heard about this sad story - an 11 year old girl with AML (leukemia), who passed away. She needed a bone marrow transplant and a perfect match couldn't be found. YOU could be someones match. It takes about five minutes to get signed up. Get registered and give someone hope! Our friend Rachel was able to find a donor, can you imagine if she was saved because of YOUR marrow? What an amazing gift for everyone involved!

2. Donate blood at your local Red Cross you can also go HERE if you're not sure where that is. You can donate blood or platelets at American Red Cross. A single platelet donation can provide enough platelets for a full therapeutic dose for a patient in need. In fact, some platelet donations yield enough platelets for two or three therapeutic doses. By contrast, it takes about five whole blood donations to produce a single therapeutic dose. Many patients who need platelets are undergoing chemotherapy or organ transplant and have weakened immune systems. A platelet dose from a single donor reduces the patient’s exposure to multiple donors and is therefore preferred by many physicians. During a platelet donation, a small portion of your blood (less than one pint at a time), is drawn from your arm and passed through a sophisticated cell-separating machine. The machine collects the platelets and safely returns the remaining blood components, along with some saline, back to you. After the donation you can resume your normal activities, avoiding heavy lifting or strenuous exercise that day.

According to the American Red Cross: every two seconds, someone in the US needs blood.  Everyday Skyler gets at least one unit of platelets, plasma, or blood products, and sometimes even more.  There are also many of Skyler's cancer buddies that need these blood products too.  There's millions of other cases where people need blood also. It is life-saving. And it can be really scary watching your sick child and being told that there isn't the blood they need available.  I am so grateful to those who have donated and been apart of the process of  helping saving Skyler's life.

Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross
•One donation can save the lives of up to three people.
•The demand for blood transfusions is growing faster than donations.
•Shortages of all blood types usually occur during the summer and winter holidays.
•Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!)
•It is possible to donate specifically only platelets or plasma. This process is called apherisis.
•Donated platelets must be used within 5 days of collection - new donations are constantly needed.
•Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks.
•The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation.
•The average red blood cell transfusion is approximately 3 pints.
•A healthy donor may donate red blood cells every 56 days.
•A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year.

You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)

Please, if you possibly can, get out and donate this holiday season. It's one of the best gifts you can give.

This Christmas, GIVE LIFE!

Wow, the coolest thing happened to me this morning.  So it was my sister Brittany's birthday yesterday so she said she wanted to come up and eat breakfast with me today.  The PICU kicks me out every morning at seven anyway for their shift change.  I had a rough night last night and maybe got an hour of sleep so this morning I was lookin and feelin tired but was excited to see my sis.  My mom and dad and sister in law Jen came too.  Brit and Jen didnt even eat breakfast and they all kinda were acting weird.  Then they said to come with them to the front of the hospital, there was a lady there I had never seen before and all of a sudden she just gave me her phone.  I was so confused as I answered it (cause thats what you do when a stranger gives you a phone right? You answer it).  To my great surprise it was the guys from the radio station 97.1ZHT!!  My FAVORITE radio station (and Im not just saying that, they are awesome and SO funny) Frankie, Dangerboy and Jessica are hilarious.  I used to listen to them every morning on the way to school.  I am so not a morning person, so that was always my motivation to get up, so I could listen to their show.  My sweet brother in law wrote in about our story for their Secret Santa and they decided to come and give us some amazing gifts.  It was awesome.  I probably sounded so dumb because I was so shocked, but I am so grateful for them and for my brother in law Todd.  I started crying but then couldnt stop smiling.  I couldnt believe that someone would do something so sweet for me and Skyler.  What a great thing to wake up to.  This made my day, no this made my whole month.  Thanks guys!  I am so happy, grateful and appreciative for this station for doing this for us, and to Todd for writing that sweet letter.  When I went back up to the room, Skyler saw the big bags and asked "Is that for me?"  It was so cute, and then his eyes got all big and excited when I showed him his presents.  They gave him a big stuff animal bear and he loves it.  He is sleeping with it now.  So cute!

I will post some pics soon of my talking on the phone, but beware Im looking pretty scary.  My sister told me last night that I could dress up if I wanted to (her way of hinting to me to put some make up on at least)  haha I was like, there is no way Im getting ready to  go eat some breakfast.  Oopsies...silly me!
                                                     
                                   Here is a pic of Skyler and his new bear.  He wrapped his arms
                                          all the way around that big thing and fell right to sleep.
                                                                              Adorable!

Ok, so I just barely listened to myself on the radio and I feel bad because I didnt sound

that grateful when they said they were giving my 500 dollars, truth of the matter is I didnt really

hear that they said that.  In my mind I was still thinking "Holy crap I think Im on the radio right now!"

It didnt hit me that they gave me that until after I got off the phone.  That's huge..thank you SOOO much!!!!!

Ok here it goes.  Im scared.  Im scared, Im mad, Im confused, Im extremely sad and hurt.  The past few days the looks on the doctor's faces says it all.  They are very worried and stumped.  Taking Skyler's spleen out was supposed to make things better.  His platelet count was supposed to go up.  It hasnt at all.  They have no idea what is going on with him and to make matters worse and more complicated it looks like his liver is having problems now.  His billi is going up so his skin is a yellow orange color and the whites of his eyes are completely yellow.  His clotting time is going up, so that means if he bleeds it takes him alot longer than the normal person to start clotting.  Add that to no platelets and we are in BIG trouble if he starts bleeding.  We have to be extremely careful now even whenever we turn him, because if he starts bleeding from the inside that could be fatal to him. 
Honestly, no one really knows what to do at this point but wait and see what his body does.  They are starting chemo today even though it may be dangerous because of his low platelets.  He has gone a month without chemo and if his blasts come back then that would be fatal to him as well.
So to say Im scared is kind of an understatement.  Skyler is my whole life.  I cant stand to think anything else other than that he is going to start getting better soon, but with the looks I am getting from the doctors its starting to get harder.  I hate the fact that those bad thoughts are coming to my mind.  It literally makes me sick.  I get to the point where I dont think I could possibly cry anymore but then the tears start all over again.  All I can say right now is that cancer sucks and everything that comes with it.
I love you with all my heart Sky! I love you to infinity and beyond!!!

Skyler's platelet count is a whoppin 3 today.  Even though that is a huge bummer, its hard to be sad today when I get to see this......

Also, here is a picture of one of his new battle wounds (where they took out his spleen)

This is the toughest kid I know!

This last week has been quite the roller coaster.  Its crazy how one day I can be so down and so heartbroken and then the next I couldnt be happier.  Today Skyler was taken off the ventilator!!  He is back on the bi-pap mask, but they were able to take that awful tube out of his throat.  They said that they were amazed at how well he is doing without it.  They also did an hour trial off the bi-pap and onto a nasal cannula to see how he tolerates it.  Again, he amazed everyone and did great.  He even smiled and laughed!!!  And then he just wanted to give me hugs and more hugs.  I couldnt stop smiling.  I cant stop smiling right now as I write this.  To go from one day of seeing Sky SO sick and sad, to the next day smiling and laughing is awesome to say the least.  Pure joy and happiness is what comes to my mind.  Oh how I missed that little laugh and those sweet hugs.  I just pray that I will continue to be able to experience these happy moments.  These are the little moments that I can pretend that all the bad is gone and just smile and laugh and love him.  I love being his mother, I am truly blessed.

                               I just wanted to post this picture because it brings a smile to my face
                                        It shows a little of that personality that I love so much

                                  


Also, I want to say a BIG thank you to those amazing people who put together and dropped off an awesome basket full of goodies for me and Sky.  You made my day, and Skyler's eyes got really big and happy looking through everything.  THANK YOU!!!!!!!!

The day and night after surgery went well.  I was actually so surprised at how well he was doing.  His platelet count went up to 35, which is a lot better than 3, his vitals were really good, and he was resting and didnt seem like he was in alot of pain.  However, yesterday and last night werent so great.  He has been getting high fevers that just wont go away, so he has been miserable from that.  He is having pain in his tummy where is huge liver is, he is getting a rash on his belly and arms that they think is cellulitis, he has been throwing up and having diarrhea, the whites of his eyes are almost completely yellow now, and his platelet count today is 11.  A platelet count of 11, are you serious?!  This surgery was supposed to make is so his platelet count go right up and now they are going back down to a low number!  I hope they didnt take out an organ for nothing. 
 I am just so far past frustrated today.  He looks so small and fragile, his eyes are sunken in with big black circles underneath, he just looks sick.  I mean I know he is sick, but sometimes I can just pretend he is ok when he looks ok.  Today I cant pretend, he is a sick boy and I finally have to accept that.  My heart is hurting today.  I just cant stand seeing my beautiful, precious, perfect little boy like this.  I hate that someone so innocent and so young has to endure something like this day in and day out.  I hate the fact that I told him daddy died because his body got sick and now he knows that his body is sick.  That kills me.  Cancer is horrible enough in itself to have, but throw in a whole heck of alot of more complications and its just torture.