Day 9 and still in the hospital!

Payton had a better day today. Our infectious disease doctor seemed to think that Payton is starting to improve. Counts were up a little and were hoping to get out of here in a few days. ANC needs to be between 500–1,000. We are at 120.

I don’t know why, but I have just been feeling really down and have had a crappy few days. I don’t know if it’s because Christmas is coming and we have no sort of life, or that I really miss my family that’s away, or that I’m sad to see Payton in the hospital so much, or that I am worried if his cancer does ever return, or that I feel really sorry for Savannah that she has no life outside of school or the hospital, or that I am so worried about Julian and his little family and how their MRI went today or if it's just a combination of everything. My worries are so much different than they were a year ago at this time. I feel like some times we go through life too fast and don’t stop to look at what’s really important. I ran across this poem written by a terminally ill young girl in a New York Hospital. This young girl passed away just after she wrote it.

SLOW DANCE
Have you ever watched kids On a merry-go-round?
Or listened to the rain Slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.

Do you run through each day On the fly?
When you ask "How are you?"
Do you hear the reply?
When the day is done
Do you lie in your bed
With the next hundred chores Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.

Ever told your child, We'll do it tomorrow?
And in your haste, Not see his sorrow?
Ever lost touch, Let a good friendship die
Cause you never had time To call and say "Hi"?
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.

When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music Before the song is over.

I know that I will never be the same person that I was before all this happened with Payton. I just don’t see things the same way that I did before. I will cherish every moment that I get to be with my kids. I love them both so much!

Ella and aunt Jenn came to visit me today!

We were so excited to get a visit from Ella and Aunt Jenn today. They brought us lunch and slurpies (payton's favorite). Payton and Ella enjoyed blowing bubbles in their slurpies. They also brought some surprises for Payton. He has enjoyed some new toys to play with.

Day 8 and very miserable!

I put my diapers in the naughty spot today. They are hurting my bum!

Day 7 in the hospital!

We have been giving Payton many bath's to
try and sooth his bum, since the last chemo
round has been so hard on him.



This has definitely not been one of our better days. Payton needed red blood cells and platelets again today. Payton has started fevering again and been really cross and complaining about his bum hurting. Poor kid, it looks awful. Dr. Murray one of our Oncologists suggested that we have someone from infectious disease come and look at Payton. We were told that Payton does have an infection and will need to be on stronger antibiotics. I believe that he will now be on 4 antibiotics and 1 antifungal iv medicines. Payton just can’t seem to catch a break. We had to change out his needle tonight, since I believe Savannah pulled it out tripping over his line. I felt so bad for Payton he was screaming like crazy, so we had to bring in another nurse. It took 4 of us to hold him down to get his noodle changed out. I hate watching him have to go through all of this and can’t imagine what is going through his head at times. I just want him to be a normal happy two year old again. Chad and I are feeling exhausted about right now since our infectious disease doctor told us that we could be here another week on antibiotics. We were really hoping to be home by the weekend to do some baking for Christmas. It doesn’t look like that will be happening. I just really hope that we can be home for Christmas, since we were in the hospital over Halloween and Thanksgiving.

Lately I have been really struggling watching these cancer kids on the 3rd floor here @ Cooks. My heart goes out to these families and what they are all going through. No one will ever realize how hard this is until you have watched your child go through this. I found this on a Care Page and it sum’s up maybe how we have felt.


I HOPE...


I hope you never have to hear the words, 'Your child has cancer.'


I hope you never have to hear, 'the prognosis is not good'.


I hope you never have to prepare to undergo radiation or chemotherapy,


have a port surgically inserted into their chest,


be connected to IV poles.


Look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.'


I hope you never have to hold your child as they vomit green bile,


I hope you never have to feed them ice chips for lunch,


I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they, lose their hair,


become skeletal,


swell up from steroids,


develop severe acne,


become barely or unable to walk or move,


and look at you with hope in their eyes and say,


'It's going to be okay, Mommy.'


I hope you never have to stay in the hospital for weeks, months or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.


I hope you never have to see a Mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, 'there is nothing more we can do.'


I hope you never have to watch a family wandering aimlessly, minutes after their child's body has been removed.


I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.


I hope you never have to see a child's head bolted to a table as they receive radiation.


I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred. And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'


I hope you never have to face the few friends that have stuck by you and hear them say, 'Thank God, that is over with,' ...because you know it never will be. Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to 'normal'. While living in mind-numbing fear that any one of these tests could result in hearing the dreaded words... 'The cancer has returned' or 'the tumor is growing'. And your friends become even fewer.


I hope you never have to experience any of these things,...Because...only then... Will you understand.... Written by: Carol Baan

We have had the privilege to have meet a little boy named Julian whom is 4 ½ years old. He was diagnosed with a brain tumor and just a few weeks ago found out that it has come back in his spinal fluid while still undergoing Chemo therapy. This little family has been on my mind and I can’t stop thinking about them. Why should they have to face losing their child? It doesn’t seem fair to me. I have spent countless hours and tears thinking about him and his family and what they have been faced with. My faith has never been stronger as it is now and I believe it wouldn't be so if our lives had been just a walk in the park. I know that God loves these children so much. I ask that you pray for this sweet family.

Day 6, ANC!!!!

Payton sharing his banana with
Cindy, a Care Specialist@ Cooks. Payton has really learned to like Cindy. I kind of think Cindy feels the same about Payton.


Payton in his new Christmas PJ's pretending to talk to Grandma! Payton know's that he can't leave his room and pass the carpet, but it doesn't mean he doesn't like to test it.

Payton's ANC was 12 today; while not much, hopefully it means his neutrofils are on the rise. If they continue to go up, we may be able to go home in a few days. Until then, we sit here waiting for his counts to rise. Unfortunately for Payton, he continues to complain about his "bum bum" hurting. When his neutrifils increase, it should start to feel better.

I wanted to share a funny experience. On Wednesday night Payton awoke around 4:00 a.m. and our sweet nurse was changing his diaper. He awoke and said thank you nurse for changing my bum and then he proceeded to say nurse I’m going to push this button (referring to the nurses call button) and then he said nurse can I please have some milk. It was just really cute. I think that the nurses are learning what they have to do to win Payton over.

Today I was thinking about how grateful I am for sister's. I have two great sisters and I appreciate my Sister in Texas whom calls me everyday to check and see how things are going and all it takes is hearing her voice and it cheers me up. She has been so awesome to keep me staying positive through all of this, when it would have been so easy not to be. She has also been so good to run errands, babysit, christmas shop for me, visit, bring meals, and snacks etc. etc. I want her to know how much I love and appreciate her for being there for me over the past 6 months.

Day 5 in the hospital!

Sunday in the hospital and Payton's counts are still low so no end in sight yet. Passing the day by watching a few movies and wishing we could be outside (sunny and in the 70's). Hopefully within the next few days his counts will start to rise so they can send us home and we can enjoy some time there before the next round of chemo. Payton is still complaining about sores in crazy places due to the chemo, poor kid.

Day 4 in the hospital!

Payton had a rough day today. He's still fevering a little and not feeling one-hundred percent. Payton needed another platelet transfussion today. Not sure how we could do this from home. Although this room is really starting to close in on all of us.