Ashton's Doctors

I wanted to share an article I found about Ashton's doctors. Dr. Edwards is my hero...he is the best of the best! And Dr. Fisher is just the greatest guy. Very funny and nice. We couldn't be in a better place! Dr. Michelle Monje is our doctor we deal with most of the time. She is mentioned in this article and works under Dr. Fisher. She is one of the smartest and sweetest people I've ever met.

The Dark Realm of Brain Tumors, Lucile Packard Foundation for Children's Health

Lumbar Results...

Got the news today...All clear! Just wanted to post quickly, I'll update things later.

Alexis.

I just found out that the little girl I wrote about a few days ago passed away on Saturday.
I am so upset, even though I knew it was going to happen. Here is her obituary.

Alexis Briski Death Notice: Alexis Briski’s Obituary by the San Jose Mercury News.

Lumbar Puncture Tomorrow

I wanted to let everyone know that Ashton is having a lumbar puncture tomorrow to check his spinal fluid for cancer cells. The last one he had was all clear and that was after having lots and lots of cancer cells in the initial test. Please think of him tomorrow...send us all the PT's you can! I'm feeling pretty good about this though since his MRI was all clear.
Thank you!

"Hi Ducks, I have Cancer!"

We were released from the hospital on Friday and we got home around 5pm. We thought we would be leaving earlier in the day, but it turned out Ashton needed another platelet transfusion so that took some time. Our stay seemed to go by so fast this time. I think part of that had to do with the fact that Ashton was never that sick. He obviously wasn't feeling his best because of this red blood count, but it didn't feel as dangerous as the last admit for fever. That's not to say this stay wasn't hard...it was. It was mainly tough because of the reality of our situation. It hit home again but not because of Ashton, this time it was because of a little girl down the hall.
Back in December we attended an event called "Fantasy Flight" I wrote about it at the time.
While we were there, Pat met another dad whose 11 year old daughter was fighting bone cancer. It had begun with pain in the arm which they thought was due to her playing softball. She had a tumor and by the time they discovered it, the cancer had spread to her lungs. Pat told me her story after meeting this man and pointed this little girl out. She looked fine to me...long blond hair, happy smiling face. She was busy playing with her sister and didn't look sick at all to me. Time went by and we saw this dad from time to time but it wasn't until recently that we started seeing them while we were in-patient. They seemed to be in-patient all the time. I got a glimpse of this girl one day as she was walking down the hall...her arm was in a cast and her hair was very short and she had obviously lost a lot of weight. But, she still had a smile on her face.
Pat got a chance to talk to the dad and he told him that they had gone on a trip for her "make a wish" and almost instantly once they returned her arm began to hurt again, the tumor was back and it was bad. A few weeks ago we found out that she had to have her arm amputated. I felt so bad for her...what must it be like for an 11 year old girl to go through this?? Terrible. Well, during our stay this last week, Pat had another chat with her father and he told Pat that they had found out that she wasn't going to make it...her battle was close to over. I was devastated to hear this. I couldn't stop thinking of her, or her family the rest of the day. Our ward in the hospital is made up of all single rooms, with one exception. There is one shared room and we had to stay in that room a couple of months ago and had a pretty bad experience. While complaining I asked why they even had a room with two beds. The nurses explained that it was actually made to accommodate a family in the event a child was to pass away. The room was much larger then the rest. I was shocked and horrified to be put in a room where children have died, but the staff reassured me that it was a new ward, and since most families choose to go home, it hadn't been used for this purpose. That was a relief. Now back to this girl. The morning after Pat told me their terrible news, I was walking in the hall. I was passing by this girls room just as her mother was coming out carrying a bunch of bags. I didn't know what to do...what do you say, do you smile? I just looked and she looked away. I figured they must be going home but then noticed she was headed towards "that room" My heart sank. So, this experience has really made me sad. I don't know this girl or her family, but in a way they are part of our "cancer family" and to find out someone is losing their battle affects us all. My heart goes out to them...and I hope they find the strength to make it through. Its just not fair.

During our stay this time we began walking..not Ashton, but Pat, Carter, Cassidy, and I. Each evening we would do a lap around both hospitals and it would take us about a half hour. Being cooped up in a room all day makes you feel so lazy, so we've decided to do this each time we are there. I want to continue to take walks each day...this time with Ashton. We took one yesterday and he really liked it. While on our walk, we passed through the park at the bottom of our hill. There happened to be a few ducks waddling in the grass. I said "Ashton, look at the ducks! Hi Ducks" and then out of no where Ashton said, in the cutest sing song voice, "Hi Ducks, I have Cancer!" My mouth dropped open. I had no idea he knew that word. We have never talked about it that way. We have explained that he had a bump in his head and we are making sure it doesn't come back, but I can't remember ever telling him he had Cancer. So, he obviously is hearing more then we thought. It was heartbreaking to hear him say that. He is so sweet.

Last night I went to a friends house for a little get together. There were a few women there who I had never met, and who didn't know about Ashton or what my family is going through. The subject never came up. I remember listening to them all talk and feeling so envious about how care free they all seemed. I can't wait to feel that way again. This morning has been a pretty gloomy one for me and I have to put on a happy face for a BBQ in a few hours. I've been grieving for our old life, they way things used to be. But, I know this too shall pass and tomorrow will be a new day.

I forgot to mention...

The official result of Ashton's MRI is ALL CLEAR! I can't believe I forgot to add that in the post below!

Blood.

I am finally able to post, the wireless service has been out here at the hospital for a couple of days. It has been so frustrating!! Ashton is doing well now. He went two days with a really high heart rate, and we didn't know why. When we first come in to the hosptial with a fever, we have to go through the Stanford ER which is where they do the first blood test to check his counts. The ER test showed that his white cell count was zero, but his red count was 10 and they don't give transfusions unless it is under 8, so 10 is pretty good. Well, after 2 days of his high heart rate and no other symptoms, he had another blood draw. This time his red count was VERY low, so low that the doctors thought it must have been an error, so they drew it again. It came back the same...very low. The drop it made was alarming because it could mean internal bleeding, but Ashton looked well and had no signs of that during the exam. They immediately ordered him to get blood and he actually had to have 2 bags when he normally has one. Poor little guy...his heart rate was so high because his body was working so hard to pump what blood he had. He is doing really good now. The dr.s think the initial test done in the ER must have been an error. The drop it made was just too dramatic. They also believe that Ashton is just a really sensitive little guy to chemo. His body takes a huge hit. They think this may be how it is for him each cycle....Chemo admit, fever admit...then chemo, then fever. Thats how it has been so far for us all. So now we are waiting for his white counts to recover. When they do we can go home.
I also wanted to encourage everyone to get out and give blood if and when they can. I never knew how many people depended on it until now. There are many children here that need it almost everyday and mine is one of them.

Already back.

We had such great news yesterday regaring Ashton's MRI.
We were all so happy and I decided it would be nice to take him out to Westcliff
for a walk. It was beautiful out! We knew the weather this weekend was going to be so nice, so I kept thinking of all the fun stuff we could do together as a family. We even got the OK to take Ashton in the pool! Unfortunately, after an early Costco run this morning, I came home to feel Ashton and he was warm. Took his temp. and it was 100.9. I wasn't going to take any chances this time around so I started packing immediately. After many hours in the ER, he is back as an inpatient with a fever and no white count. This time there are no other symptoms. We are waiting on blood cultures they drew in the ER. Its possible he just has a fever from having no white count, but we'll see. I know this time he isn't as sick as the last fever admit.
I will post again when I know more.
Dori

The MRI

Ashton had his MRI today and he did such a good job. He woke up so different this time, he was quiet and happy. Nothing like his 7 weeks of radiation.

Anyway, I wanted to let everyone know really quickly that the dr. called me this afternoon with the preliminary results....she saw nothing! There were definitely no tumors present. She has to tell me that the official results won't be available until Monday, but from what she can tell, he is all clear! She said she compared it to his last clear MRI and nothing has changed. I am so happy! Now we can all enjoy this weekend with the beautiful weather and just be thankful for everything we have.

I will post on Monday what the official results are...

Exactly 6 months today.

Today marks 6 months since my family's nightmare began. I can't believe it has been that long already. With all the appointments, treatments, and normal crazy life, it has gone by so fast.
I was looking at old photos earlier and the Ashton I see in them just isn't the same one I know now. He has changed so much. Not just in looks but in age...even through all of this he has grown and matured more then I thought he would. He isn't a baby anymore. 6 months is a lot of time.

We have been home for 4 days now and no fever so far! (knock on wood)
He has been feeling a little less energetic due to the chemo, but he is still so much better
then he was before he started his nausea medication. I also was told he may be feeling better because the radiation is wearing off. I didn't know this, but it can stay with him for up to 6 months after his last treatment! That would mean by July it should be completely worn off.
The dr. told us on Monday that this is the toughest time for him during chemo. I was shocked.
If this is the toughest its going to get then wow he's doing good! I can't wait till all his counts go back up and he can get together with his buddies again. Now that he is feeling so good and the weather is nice, I'm anxious to get him out and about. I have to wait though because of immunity issues, but in about 2 weeks we should be good.

We have a very big day coming up this Friday. He is having another MRI to make sure nothing has grown back. Please keep us in your thoughts and prayers....I'm going to be feeling horribly anxious until we get the results, hopefully not long after the scan. We have to be up at the hospital at 7:30 in the morning which means we have to leave our house at 6:30. I will update as soon as we know the results. Keep your fingers crossed and send us all the positive thoughts you can! We need them again!

So far so good.

Ashton ended up being admitted for treatment on Tuesday instead of Monday. The dr.s wanted to him to have another blood test on Monday to check his counts. So we came in on Tuesday at about 1pm. I have to say, things have gone SO WELL, so far that is. He has only been sick once on Tuesday night, which I think is amazing. Again, I'm going to give credit to his new medicine. It has made such a difference. I don't know if I've ever mentioned they way it works once we get here. The first thing that has to happen is Ashton needs fluids. They hydrate him and check his urine to make sure he is ready to tolerate the chemo. This can take quite a few hours.
Once he gets the go ahead, he gets a syringe of the first chemo, Vincristine, which only takes a few seconds. After that he is hooked up to the big one, Cisplatin. Its the one that causes hearing loss and scares me the most. He started that at about 5:30 Tuesday, and it runs for 6 hours. While he was getting it we were able to go up to the playroom and bake cupcakes and just have fun. He has been feeling so good! So thats the first night. Immediately after the Cisplatin is done, they flush him with so much IV fluids. Since his Cisplatin was done late in the night, he was hydrated all night long and woke up with such a puffy face! It goes away as he pee's it all out :) On the second night we are here, he receives his third chemo, cyclophosphamide. They give it exactly 24 hours from his first dose. This one runs only an hour but again, he is hydrated a huge amount afterwards to flush it out. This is the point we are at now. He had that last night. So tonight he does a SECOND dose of Cyclophosphamide, which runs just like the first. This means tomorrow we can go home! I am amazed at how well he has tolerated everything this time around. He constantly wants to be out of the room playing somewhere which is a sign he is feeling good. Once we get home though is when the watching and worrying start. Oh, I forgot to mention that he will get another syringe of Vincristine, the one that only takes a few seconds, next week. That one is no big deal, nausea isn't even a side effect. Back to the watching and worrying...He typically, as in the past two rounds, develops a fever during the first week we are home. His blood counts drop so drastically. Please keep your fingers crossed that maybe this time around that wont happen! I would love that, and so would he, I'm sure.

Next week is going to be a big one for us. He is scheduled for his next MRI on Friday. I can't believe it has already been 3 months since we got the word that he was all clear. He will be getting these MRI's once every 3 months for a couple of years. Even as I am thinking about this now I am nervous. I can't imagine how I will be feeling Thursday night. The drs have told us numerous times that the MRI's will always cause us high anxiety, which is totally normal. Something I do not look forward to. Please continue to send prayers and positive thought that he is still all clear and he does not have a recurrance.

On a lighter note, we were told yesterday that they would be broadcasting Monsters vs Aliens to all the patient rooms. This movie is still out in the theatre but they get movies here for the kids who are too sick to get out. Anyway, some of the animators from Dreamworks were here, going from room to room. They came in Ashtons room and luckily Cassidy was here too. She got two sketches, one of Ginormica (sp) and one of Gloria from Madagascar. Ashton got one of the blue blobby thing from monsters and they even did two of Shrek for Carter, Shrek and they donkey. It was so cool.