Sweet kisses and a Christmas Tree.

I just tucked Ashton into to bed about an hour ago. He loaded me down
with many kisses and hugs before saying goodnight, which is great of course.
He is really starting to get his old "spark" back. He also said something I hadn't
heard for a while..."see you in the morning". I said it back but a flash came over me...
what if I don't? That is happening more and more lately. I know deep down that
I'm sure to see him in the morning, but there is this dread about the future.
What if his brain should swell in the night and we lose him? Will he be here for
another trip to Disneyland this summer? Will he be here next Christmas?
I thought of that today as we went to get our tree. Is this his last trip with us?
I couldn't bear it....I won't be able to do any of our traditions if he is gone. These
are not thoughts I should be having about him...it's just not fair at all!
An oncology nurse practitioner said something to me the other day that made me
feel a bit better. I was asking her about his treatment schedule, letting her know
how I am so anxious to start his treatment because I want to feel like we are doing
something. She said its hard now to even think we will have a handle on things, but
to give it about four months and we should feel that we do. I can't wait to feel like we
have the upper hand....I just can't wait.
Our tree is decorated, I've added a few other things around the house....I even
felt like putting some Christmas music into the cd player as we made our treck up the
mountain to chop down our tree. We do have 2 other kids after all...and they deserve
to have their traditions and pieces of happiness. I even started to get into the
Christmas spirit a bit. We still have to have our normal times...it helps get us
through the tough times.
Ashton is progressing more and more each day still. I was noticing today
that he is starting to look like a little boy sick in bed with a cold or something.
He isn't frozen in one position from neck pain, he is moving around more and his
left side is definitely getting to be more mobile. He still is refusing to practice walking though.
The rehab is set to start this week and I'm excited about that.
We have 3 appointments up at Stanford tomorrow and we have to be there at 7:45
in the morning!! He has a C.T. scan, then a meeting with one of the oncologists and
finally a check- up with the wonderful Dr. Edwards, his surgeon and my hero.
Its a full day but at least its another step forward in the direction I so desperately
want to get started. His treatment and his cure.

Toys R us

Well, there isn't much to post for today. We had a nice mellow day
at home but we did make a trip to the toy store. I needed to get
Ashton a new means of transportation for when we are cruising through
the hospital corridors. Holding him is beginning to be a bit of a strain
and he tells me a lot that I am hurting him. Obviously I don't mean too
but he is like carrying "dead" weight, he doesn't hold on anymore and I think it
is hurting him as well as me. I was thinking of a wagon but then decided
that would be too hard to load in and out of the car, so I settled on a new
stroller. Whenever we go to toys r us, Ashton has to go back to the bike
section and sit in the black escalade power wheels....Don't know why he
likes that one so much, maybe because the doors open and close, but he
sits in it for as long as I will let him, which has been up to a half hour on one
occasion. Today he kept whispering in my ear that he wanted to see the "motor
cars", thats what he calls them. I took him back and he immediately asked to
get down. I knew what would happen next.....he realized he couldn't walk, yet
again. He started crying so we pulled the car out into the aisle and tried to set
him in it which wasn't good enough for him so he cried more. By this time we
had a full audience of kids and parents looking at us. It probably didn't help
that he refused to wear a beanie cap today and his shaved head and bright
red scar were in plain sight. He got a lot of looks and stares. I knew it would
happen when taking him out and I don't think they are staring in a bad way,
I would stare too because I would feel bad for any child I saw who looked like
they had something terrible happen, and was crying in the aisle because he
couldn't get into the "motor car" by himself. He will one day though and
when that day comes, I'll let him sit in one for an hour if he wants.

His happy face.

My mom posted this photo of Ashton. This
is the one we kept taped to his bed in the hospital for
everyone to see. It is actually really hard for me to
look at photo's of him right now without breaking down.
It is so hard to see him happy and "normal". I have
been having a really rough day, actually all days are
rough, but not usually until the evening when he has gone
to sleep. Today I just can't help but cry. I think the severity
of the situation is really sinking in....sort of like I am over the
shock of it and now am coming to terms with how tremendous
this all is. People have said how we are doing such a good
job, and how strong we are, and I have told them they would
do the same if they were faced with having a child with cancer.
But the truth is, I'm really not that strong. I cry ALOT.
I catch myself not thinking of it and maybe laughing at a
joke or something on T.V. and then it hits me and I remember
all over again.....my baby has cancer, my sweet boy who I
never thought I deserved because he was just too sweet and loving
has cancer. How can this be happening? I used to always tell
myself, when things were hard and kids were mis-behaving, that
it could be worse, at least I don't have a child with cancer. I swear,
I would say that all the time. And now I do. I am so anxious to
start his treatment and be on the road to recovery. This holiday weekend
has been too long and I'm dwelling too much. I also wish I could
get into the spirit of the holidays and decorate a tree, but there is a
black cloud over me and I just know I can't be feeling happy right
now, which isn't fair to my other kids. I'll go through the motions of
Christmas but this year just won't be the same.

Thanksgiving gift.

Before any of this happened to Ashton, he had been asking for
a Black n Decker power tool bench (for kids) that he had seen
advertised on T.V. When he see's something he likes he will
let us know about it over and over and over. My parents were planning on
buying it for him for Christmas. When Ashton was in the hospital
they decided to get it for him early, for when he came home.
We've been home a week and he hasn't show any interest in playing
with it. How can he when one side of his body doesn't work right
and he can't stand up to play. We think it will be an excellent tool
to use with his physical therapy, and today we were proven right.
This afternoon Ashton actually wanted to go outside so I put
his sweatshirt on, prepared to go on a little walk. He asked
for his scooter, but when he tried to stand on it he got really frustrated.
We walked a bit with my family, but then he wanted to go back inside
and go to bed. Instead of bed I thought I would try the tool bench.
We had placed a small stool by it that is just the right height
for sitting and working with the tools. He surprised us SO much.
His face lit up and he was so excited! He sat at that bench for
at least twenty minutes and played away! He even used his "sad"
hand to help hold down the power saw....he did this over and over.
I also let go of him for 30 seconds or so and he had good control of his
back, he didn't fall over. What strength! The look on his face made my and the
rest of my families day. To think, exactly 2 weeks ago
he had major brain surgery and today on Thanksgiving, he gave us a
gift we certainly will never forget.

Thankfulness

Obviously our family has so much to be thankful for this Thanksgiving.
Besides being thankful that Ashton is still with us there are alot of
other emotions going on in my chaotic brain right now. Anger that
this happend to him in the first place, guilt that it had to get to the point
it did, and overwhelming sadness. Sometimes I think about him a few weeks
ago, running, jumping, smiling, laughing, riding his bike, and just being a
regular kid. It just breaks my heart. He is such a different boy right now.
I know that will change, but its really hard for me to imagine. I just wish
his hair would grow back, his lopsided smile would miraculously fix itself and
next time he wakes in the morning, looks at me and says "let's get up now, mommy", he really will be able to get up instead of realizing he can't and crying, like he did yesterday.
Through out his ordeal in the hospital, we had taped a photo of his adorable
smiling face for every nurse and dr. to see. I wanted them to see how bright
and shining he was before his emergency...I wanted them to know him before
the tubes and wires.

Back to being thankful...Pat and Ashton and I took a trip to the Dominican E.R. today
to give a huge "thanks" to two of the best nurses at the hospital...(you know who
you are) It felt so good to be able to do that. Ashton wasn't in the most perky
of moods, but they got to see him and know that what they do does make a huge
difference. A thousand thanks to you two, and the numerous other nurses and dr's
that helped stabilize him that day. This year, Thanksgiving has a whole new meaning.

What a day!

Ashton had his surgery today and did wonderfully. He now has his port and it
is located just above his left nipple. Looks a little strange, but the dr's said it should
be less noticeable once he gains some weight. He IS really skinny now and that is
one of my big worries because I know he will lose alot more weight once he starts
treatment. The port is so important though because it means they have access to
one major line for all his chemo and any blood work they may need. No more trying
to find a vein! He looks like a pin cushin as it is right now. I was noticing tonight
that there isn't one place on his body that doesn't have a bruise, scratch, pin prick,
stitch or adhesive tape mark. He really has been through it all. The dr. told us,
NO MORE SURGERIES! She said we are over a major hump so I'm feeling
pretty good! They also did a lumbar puncture today to test his spinal fluid for
any cancer cells floating around. They told me they are almost certain there will
be some because there are a few tumors in his spine already. This test just gives them the
"base" of what to go on regarding the treatment. They will do more lumbar punctures
in the future, during treatment, to check for cell's and if it is clear, then that means things
are working! So, I was told today to expect to start Radiation in about 2 weeks. That means
this Christmas our little guy may be feeling pretty sick, but it's important to start right
away because his tumors are aggressive.

I'm noticing lately that Ashton seems to be depressed. He is really bummed out
about not being able to do things and from the pain of the surgeries. I told the
dr's and they said that can happen. He does laugh though, mostly to spongebob or
his brother Carter, but he is also really quiet and withdrawn. This of course makes
me feel so bad and I think I need to get him together with his buddies or just take him
on walks in the fresh air. I really need to get him to want to walk again, as it is right now he
doesn't think he can, so he doesn't want to try.

So touched.

We started the day with our first Occupational therapy appointment
at Dominican Rehab. center. It didn't go over very well, but thats to
be expected. Ashton just cried the whole time and told us he wanted
to go home over and over. We didn't stay long but we made another
appointment for the therapist to come to our home. We are still
waiting to hear back from Rehab without walls and once we do we will
cancel the appointments with Dominican. After rehab, we went by
Ashtons Pediatrician's office, I wanted to surprise her with a visit.
She had rushed over to the E.R. when we had our huge emergency
and comforted me and tried to help with the other doctors there any way she
could. I wanted her to see Ashton, and to know that he was ok. Unfortunately
she wasn't in the office until Wednesday, so we will try back then. We
have another therapy appt. that day, so it will work out well. Then we made
a stop at Ashton's great-grandma's house. She is in a wheel chair and can't walk
stairs anymore, so there would be no way for her to see him unless we
went to see her. She was very surprised and happy to see us and it was a nice visit. So I guess
we had a full day of outings. It felt pretty good to run around a bit, we've
been cooped up in the house and before that the hospital, so today felt
a little more like "normal".

I wanted to express how completely touched I am at the out-pouring of
support and kindness from our friends, neighbors, and community.
I am truly blown away! We are so blessed to have such great people
surrounding us and holding us up when we are at our deepest down.
I really can't put into words how much everyone's well wishes and
calls, dinners ,email's, and visits mean to us. I read each and every
email and facebook message...Hi Facebook friends!...and even though
I don't always answer them, they mean so much to me and I truly
feel better after having read them. So, don't be shy everyone...
we need you in more ways you will ever know.

P.S.
Ashton has surgery tomorrow at 11:30 at Stanford to have
his port placed. Please continue those thoughts and prayers
as our little fighter embarks on the next chapter of his long,
long journey.

Amazing Grace.

Today was a good day, a real good day. Ashton woke and wanted to come into the living room
instead of staying in bed. I take that as a good sign. He does seem a little depressed though.
I don't blame him. One day he fell asleep and the next he woke up with tubes and wires attached and can't do all the things he used to do. I wonder what he thinks happened.

About 6 or 7 years ago my older son, Carter, played baseball and had an amazing
coach who was the most positive and nicest person. His son was also on the team.
At the end of the season we found out that this boy had had brain cancer when he
was younger. I was so interested and amazed with this family and I needed to know
about it because it just touched me so much. This boy's mother's name is Grace.
She told us his whole story and I was just in awe at how well he was doing and
how the family seemed to cherish every moment with their son. While talking
with Grace I found out she was going to school to get her nursing degree. She
had wanted to work with other children battling cancer. I mentioned how I had
always wanted to be a nurse and she said I should go for it now, that is wasn't too
late. I would see her from time to time and ask her how school was going and
she always said it was going great and she just loved it. I decided to try and go
back, I signed up for a couple of classes at Cabrillo, but shortly after I became
pregnant with Ashton, so I dropped them. I remember seeing her at some school
function and letting her know that I was pregnant and was putting nursing
on the back burner. By this time she was almost done and so close to working
in the field of her dreams. Once again, I would see her from time to time and
ask her about work, etc. On November 12th, the worst day of my life, she
was one of the first people who popped into my mind. I tried and tried to call her only
to get a busy signal. Finally about 3 days after Ashton's surgery, I got her
machine and left her a detailed message about what we were going through.
She called back about 5 min. later and was absolutely shocked to find my family
was going through the same things hers did. She came to visit the next day, brought
us a backpack full of goodies for the kids to do and lent me her laptop so I could
post on this blog. She is the one who actually set this blog up for me and posted
the article about helping families with cancer. She came by this morning and
we all had a nice long talk. I feel so blessed to know this woman and to be able
to have her in my life at a time like this. Her son had the same cancer, at the
same age as Ashton and is happy and doing well. He just celebrated 10 years
cancer free. We even have the same Oncologist, Dr. Fisher.
Thank you for being there for us Grace, you're amazing.

A better day.

Today Ashton woke with his left eye completely swollen shut. He spent most
of the morning grumpy and frustrated because he couldn't see. I called Stanford
and was told pretty much what I expected. When he had the drain removed from
his brain, some of the fluid leaked out under his skin. Since he didn't sleep in a
hospital bed, propped up just right, the fluid pooled around his eye and caused the
swelling. Poor little guy, as if he doesn't have enough going on with the weakness
on that side, now his eye is swollen shut. It took almost all day to get back to normal.
We did physical therapy with him ourselves today and he wasn't too into it. The
second time we tried he did a bit better, its as if he is getting stronger little by little.
We have started calling his strong hand his "happy" hand and his weak hand
his "sad' hand. We tell him he needs to use his sad hand more to make it
happy like his other one....I think he really understands this. By the end of
this evening, he was waving and giving high fives with his sad hand. I bet tomorrow
will be even better!

Bitter-sweet homecoming

So today the hospital sent us home...I wish they would have told us what to
expect. It was really hard to walk in and see all of Ashton's toys and things
sitting just like they were when we left and knowing he can't play with them
like he used to. I also wish they would have explained to him that he wouldn't be
able to do everything for himself just because he was home. Dinner was the hardest
part. We got two delicious pizza's delivered, thank you Denise, and they happen
to be from Ashton's favorite pizza place, Tony and Alba's. I thought I would just
feed him sitting up in bed but he insisted on sitting at the table. And in my lap
wasn't good enough, he had to be in his booster. Once we had him balanced
on his chair--I have to hold him steady or he will fall over--he cried because he
was wearing a diaper and he wanted to wear his big boy pants and his jeans.
He has always wanted to wear jeans when eating, he doesn't like sitting on crumbs.
We finally got him all dressed and situated and once again he insisted on trying to
feed himself with a fork, which wasn't going over too well. He was having such trouble
getting his cut up pizza on the fork and it was so pathetic to watch. I feel like I am living
some sad, sad, movie....but its not fiction, its my life now. We are set up to get some
physical and ocupational therapy from rehab without walls. They come into the home
and do all the work in his own environment, they even will take them to the park to work.
Where ever he is used to going, they can work with him. I have been crying most of
this evening and I can't seem to shake it. I just hope I am doing everything right here and I have asked a nurse friend of mine to come over and just help for a bit to make sure I am
doing ok. As for Ashton, I was so proud of him tonight. Just the fact that he wanted to feed
himself and be so independent shows me he is a true fighter and he is going to beat this
cancer.

Another thing...

Today we had a long talk with on of the surgeons that worked on Ashton. She has always been so sweet to Ashton and I thanked her for being so gentle. She told me that children like him always get to her because they always get a few a year that don't make it. I asked her what would have happened if I had left the Dominican E.R. and he had started to posture at home or in the car ride home. She said it would have probably been too late, that he would have died. She told me we were so lucky to live so close and that recently there was a boy from the central valley airlifted in with the same tumor and he didn't make it because the flight was too long. That just breaks my heart. She also said that the two bags of IV the dr. gave Ashton in the hospital most likely caused the fluid to build up in his brain very fast which caused his emergency. The "what if's" will haunt me forever. I feel so blessed.

A hard day...

Today Ashton woke and was exceptionally grumpy. Nothing we could do
would calm him down, the only thing that worked was my lying with him in bed.
The team of neuro-surgeons came in early, as they do every morning, but this morning
they said they thought we could go home tomorrow. I was a bit apprehensive because
I feel like something terrible will happen to him again if he isn't being constantly monitored.
They reassured me he would be able to heal better in his own environment and we can
continue his Physical and occupational therapy at Dominican. He had a bath at about noon and then went to the gym down the hall for some physical therapy. At one point the therapist wanted him to walk to me-with help-and as he came towards me in his little hospital gown, I couldn't help but notice how he has lost so much muscle tone in his skinny legs. It has only been a week since surgery, but he has changed so much. There was also a full length mirror along one wall and I asked the therapist to make sure he didn't catch a glimpse of himself. I think it would scare him too much. He has noticed his hair is gone, but I've told him it will grow back real soon. Thank goodness he won't be able to see the large incision that runs down the back of his head. I think his therapy wore him out because he just cried and cried the rest of the day. At about dinner time I noticed his left eye--the side that is paralyzed--was buldgeing a bit. The I noticed the left side of his head was a bit swollen and when I put my fingers on it, it felt squishy. I immediately called the nurse who also noticed these new problems and she paged the dr. right away. I started to feel that horrible feeling in the pit of my stomach again, like something was really, really wrong. I was sure he would be sent to CT and we would find out his brain was swelling again and he would have to go to surgery. After what seemed like an hour the dr. showed up and examined him. She pointed out that his eye that is bigger is on the side of his face that has no movement and it was open wider as a result. The puffiness on his scalp was caused by the tube that was in his brain draining fluid. When it was pulled out, a bit of fluid must have gotten under his scalp and since he prefers to lay on one side, it collected there. I was so relieved. The events that happened last Wednesday traumatized me so much, I cant shake the feeling that doom is just around the corner. So, we are leaving tomorrow morning, It will be a long weekend of watching and worrying. Ashton is so happy to go home, he misses his brother and sister so much. He just lights up when they come visit. Speaking of visiting, we had a special visitor come by last night, Elmo. Ashton loved seeing him and had a huge smile the whole time he was here, this place is so wonderful. Ashton is sleeping soundly now hopefully dreaming of sleeping in his own bed, finally.

The day Ashton flew in a helicopter.

As many of you already know, Ashton had been throwing up off and on for 6 months, with no other symptoms. Dr's would just say it was a virus. I started doing some research and thought he may have reflux disease, or GERD. The dr. put him on Prevacid and said come back in two weeks if things don't get any better. This was about 4 weeks ago. Two weeks ago I took him back and brought a journal of dates and times Ashton threw up. The real worrisome time was when
he seemed to be having a nightmare in the night and rolled over and vomit just ran out of his mouth. He never woke up, even through the bath we gave him. I thought he must really be tired because he recently stopped taking naps and there was the time change. Anyway, the dr. noticed that many of the times he threw up were in the morning. She asked if he had been complaining of headaches because throwing up in the morning could be a sign of brain swelling. She thought it would be a good idea for him to get a C.T. scan, but thought he should have an upper G.I. to test for reflux first. He was scheduled for the G.I. on Thurs. the 13th. On Wed. the 12 he had been throwing up all morning so I called my husband Pat and asked him to come home. I also called our Pediatrician and said I would be taking Ashton in to the Dominican E.R. for an I.V. because he just couldn't keep anything down. We got to the E.R. at about 9:30am and Ashton was so tired. He slept most of the time we were there. Pat and I waited in the room for some blood test results and ate lunch and thought everything was normal, but it wasn't. The dr. came back and said the blood tests were normal and he would need a urine sample before we left, but to still finish the I.V. We were about to be discharged but still needed to get the urine sample so I tickled Ashtons foot trying to wake him up. Thats when I noticed he was in a really deep sleep, a sleep I have never seen any of my kids be in. My tickling his foot made him start to "posture" but the nurse in the room said he was having a seizure. He arched his back and his tongue came out and his eyes rolled around in his head. I said to the nurse that something was wrong, he had never done that before and I looked at Pat and he was crying. Thats when I knew something was really wrong. The nurse hit the panic button but it seemed like minutes before anyone came. Pat actually had to yell down the hall for help. They rushed his bed down to the main part of the er where he was hooked up to various machines to take his vitals. Then they rushed him in to C.T. This whole time I felt like my insides were twisting and I was in some sort of crazy dream, I can't even explain the way I was feeling. It was the worst feeling in the world. After the C.T. they rushed him once again back to the ER where the DR. who originally was going to release Ashton, told me the news. He had a large mass in his brain. At this point Ashton started to Posture again and they had to put a breathing tube in him. The whole er was working on him....I had 2 chaplain by my side like grim reapers. Thats just how I felt then, now I think back and was grateful for them. The dr. got on the phone with Stanford and arranged for air transport. Neither Pat or I could go with him so we said our goodbyes and headed out on the longest car ride of our lives. When we reached the summit of 17 we saw the most touching sight. Off to the left of us, the sun was setting and the sky was a beautiful pink color, but up there in those beautiful clouds was the sillouette of our Ashtons helicopter, his very first ride. When we got to LPCH we got to see Ashton, he was basically in a coma and they had put a tube in his brain to drain the fluid. They took him to get an MRI and scheduled him for surgery with Dr. Edwards, my hero, the next morning. I could hardly sleep. The next morning we once again kissed him goodbye knowing the risks of brain surgery. While he was in surgery, another Neuro-surgeon came to us with the results of the MRI, it had spread to his spine and it was Cancer.
Medulloblastoma. Ashton did wonderful in surgery. He is still coming out of the effects of having the tumor on his brain stem and having it cut out so close. He is weak on the left side and his face sorta looks like he had a stroke, but he walked today, with help, and today, he smiled and laughed for the first time since his heroic ride in the helicopter.

How to help a family that has a child fighting cancer.

Here is an article with ideas of how friends and family can help Ashton and his family.

http://www.acor.org/ped-onc/cfissues/dodont.html

We wish you all the best.