Dear Ben,


I can't believe its been four years today since you have been gone.  It still feels like yesterday that we said goodbye and Skyler and I gave you our last kiss as you lay there so still.  I don't know why your journey here are earth was so short, perhaps it was to carry Skyler through his journey with cancer from heaven.  Maybe it was your purpose to be with our son through those months in PICU when he was in his induced coma so you could comfort him and urge him to keep fighting.  My only comfort through those agonizing days, weeks and months when his mind wasn't with me was knowing  that he was probably getting to see his daddy again.  Ben you would be so proud of our son.  He is so strong and is handling everything that has been thrown at him with courage and an attitude that I know I couldn't have if I had to go through what he has been through.  Its been so hard to do this without you, but its comforting to know that you are with him in a different sense and always watching over him.  He is also so much like you.  He has such a tender heart like you did.  He loves giving presents and can never wait until the actual day of my birthday to give me his present, just like you.  He also is so picky with his food and cant have anything touching each other on his plate.  He definitely didn't get that from me because as you know I like to mush everything together.  Its these little things that you used to do that make me smile and will always remind me of you.


We went to your grave today and Skyler gave you a pinwheel and some butterflies to make you smile.  Ben, he loves you with all his heart and misses you so much.  He still remembers playing with the hair on your chin and playing hide and seek from grandma Kathy under blankets.  He tells me everyday how much he misses and loves you.  Sometimes he even starts crying and says he cant go to sleep without a daddy.  I tell him that you are always with him and that if he closes his eyes he can dream about playing with you again.  Skyler is also pretty sure that you are working on making him a game room in heaven, so just a heads up in case you haven't started it yet :)


Ben I love you with all my heart.  It will be a wonderful day in heaven when we get to see you again!


Love and miss you,
Crystal

Skyler still has a cold, but we have managed to stay out of the hospital so I'd say he is doing great!  He did get croupy one night but he was still able to breathe ok and he didn't spike a fever so I didn't take him in.  He still has his cold symptoms but his body is handling it well so far.  It's been a huge relief.  He also has his best friend to cuddle with and help him feel better.  Whenever he gets hurt or doesn't feel good he goes and grabs Jagger so Jagger can kiss (well its more just a lot of licking) him better.  A little gross I know but oh so cute!!  He LOVES his new buddy!  I'd say getting Jagger was one of the best decisions I have made as his mother.

These months seem to be flying by lately.  Tuesday we headed back up to clinic for more chemo.  I was really happy Skyler only had to get Vincristine  and no chemo in his spine, but when I told Skyler that he didnt have to get the sleepy medicine  he started crying.  Definitely not the response I was expecting.  He looked at me totally bummed out and said "NOOO!  I really want to have my backpoke mom."  His reason why...he really wanted to play with the helicopter they have in there while he is getting his sleepy medicine.  It was a little slap in the face and reminded me that he really is just a child.  He just seems so much older to me with all the things he knows, has been exposed to, and has to do that sometimes I forget he is just a little boy.  Its crazy that he has no problem having to go without food, get anesthesia and a giant needle stuck in his back if that means he gets to play with a toy.  He seiously amazes me and I know I wouldnt be able to do what he has to do with the attitude he does it with.  I read this saying the other day and it is so true for me.  "Most people never get to meet their HEROS, I gave birth to mine."

Despite not being able to play with his helicopter in RTU, Skyler did really well at clinic.  His counts came back really high but not as high as they were last month.  This just means that his body is still trying to fight off whatever infection he had when he had those fevers.  They didnt bump up his oral chemo anymore because they are expecting his counts to drop back into normal range this month.

Physically Skyler has been doing really well until yesterday when he started coughing and sneezing and had a runny nose.  I was hoping and praying it was just allergies or something, but throughout the night and this morning it has gotten worse.  He has a full blown cold and Im afraid we might end up either in the ER with a fever or in ICS with croup.  Before diagnosis Skyler's colds ALWAYS turned into croup and he always ended up in the hopsital getting breathing treatments and steriods.  I pray his cough this time just stays a normal cough and that his body can fight this off like any other kid.  It's a good thing his counts are high so they will help fight this cold before it turns into anything more.  Before cancer I never in a million years thought a cold could bring this much anxiety, worry and panic.

Skyler's favorite song right now is Stronger by Kelly Clarkson.  It's totally a breakup song but he doesn't know that.  He says it makes him stronger every time he listens to it.  On our last clinic appointment Skyler told me it was a good thing he listened to his song today because it made him stronger to get his chemo and sleepy medicine.  I managed to sneak this video of him listening to the music video.  This was his fourth time in a row.

                        http://youtu.be/5-LkV-WivOE

I have been really busy lately and I have alot of stuff to catch up on, including Skyler' star raising party, but here are some pictures of some of the things we have been up to.  Skyler has been doing really well and having fun playing with cousins.  From the moment he wakes up he is on the go.  His favorite thing to do now is go play at his cousins or both of grandma's houses by himself.  Since I have been letting him do things without me sometimes he is taking full advantage of it.  He loves feeling "normal" again.  I read this off of another cancer buddies blog before he passed away and it really hit me hard.  "What's the point of trying so hard to save our child's life if we don't let them live it?"  That has stuck with me and its what I have been living by lately.  This mother decided she wasn't  going to keep her son in a bubble anymore, she was going to let him live his life.  The following year he died.  It just goes to show you never know what the future holds, so make the most of what you have today. 


                      We went to Wheeler Farm with cousins...

We had a WONDERFUL Easter!  The picture above is Skyler and his two bestest buddies on Easter morning.  I know that is not the most flattering picture of Jagger, kids cover your eyes.

My mom had an Easter egg hunt and a treasure hunt at her house.  This is Skyler's face when he saw all the eggs!

Grandma gave all the kids sunglasses and towels for their prize after the treasure hunt.  I think they like them!

  All the grandkids!  Skyler loves his cousins, he told my mom later that day that he wanted to erase the whole day so he could do it again.

We also went to a Bee's baseball game.  I love watching baseball so this was really fun for me.  Skyler's favorite part were the treats and playing in the suite we had.

CORRECTION: The universal blood type is O Negative not O Positive. 

I'm sure everyone is sick of me talking about this but its just so important to me.  I made a video of some facts about donating blood.  Before I was thrown into the cancer world and transfusions became a part of my everyday life,  I didn't know much about giving blood except for it sounded scary.  I thought only accident victims needed transfusions and that it didn't happen very often.  Boy was I wrong! 

 We still have appointment times open, so if you are able please let me know and I'll put your name down.  Walk-Ins are welcome but the process is faster with an appointment and I need to know how people are coming so we have enough staff. The best way to reach me is to text at 801-628-6768.  Thank you so much for helping make this a success!