Just checked the paper and Ashton's story isn't in there! Bummer!
Hopefully it will be in tomorrows edition....
:)
Friday, January 30, 2009
Thursday, January 29, 2009
He's done!
Today was the last day of Radiation for Ashton..hooray! It was a great day! Everything went really smoothly and we were home by 12:30. Ashton got a couple of gifts from the radiation gang and I posted a bunch of photos on my facebook page. It was just a really happy day. Soon after we arrived home, we had to leave again to go to the park. Ashton has been loving to go there these last few days and it is great to see him play with his good buddies again. I had another reason to go there today though. A reporter from the Santa Cruz Sentinel called yesterday and we arranged to meet up at the park for an interview and photos. It was all really interesting and there will be a story in tomorrow's (Friday's) paper. I can't wait...the reporter was really sweet. I noticed later that she joined Ashton's cause on Facebook, I thought that was pretty cool. More news...Ashton took a few nice steady steps today on top of the play structure at the park. You can tell he is really trying hard to find his balance and take those few steps...the great thing is how proud he is when he does it. He says "look mommy" and has his little sly smile the whole time. I am just so amazed at his progress from just a few days ago. I know he will continue to excel during this break and I am so relieved to know that the hard part is behind us. Tomorrow, I plan to sleep in a bit and gear up for our big night on Saturday. I hear there are some really nice raffle prizes and auction items that have been donated. Can't wait to see everyone there!
Tuesday, January 27, 2009
Two days to go!
Well gang, just two days of radiation to go! Ashton did his final chemo this morning so we said goodbye to all of our wonderful nurses in the day hospital. Nurse Mary, nurse Melissa, and nurse Heather...you guys are so great..thank you for being so sweet and kind to Ashton. We will miss you these next 6 weeks but I'm sure we'll pop in to say hello at some point. And we will be back for the rounds of chemo to come.
Ashton is doing so great...these last few days he has wanted to go to the park. He rode his trike all over the place and is just thrilled with himself for being able to do that. I feel like summer vacation is just a couple of days away. That's how anxious I am to get to our break. It is so wonderful to know I can maybe take a shower in the morning again and drive the kids to school...just get back a bit of my old "normal" life. I have to say though, these last weeks haven't really been as bad as I thought. Everything went better then expected. I really thought Ashton would get sick with something and have to be hospitalized or just get a fever, but he has been just as healthy as can be. He does have his bouts of vomiting though and to tell you the truth he has been doing it more lately. The last two mornings he has thrown up as soon as he wakes, which makes me panic a bit because that is what his main symptom was before we knew he had a tumor. I actually talked to his dr. today because he threw up twice before we left and it just didn't seem right. She reassured me that it just isn't possible that the tumor has grown back and causing him to be sick. She did mention something about brain swelling, and that got me worried, but told me most likely it is because his anti-nausea meds have worn off. She called me tonight just to let me know that there is no way he has any swelling, she had been under the impression that he had a shunt and sometimes they can malfunction, but that isn't the case. So, I feel better. I'm so lucky to have such a great dr. to communicate with! :) She will be seeing Ashton tomorrow for a check up just to be on the safe side, but I think he is going to be OK.
After Thursday it will be pretty much watch and wait in regards to getting the feeding tube removed. They want him eating before they take it out and unfortunately Ashton doesn't want to eat because it is in. I'm hoping he gets a big enough appetite and won't care that its there. He really will feel much better once its out and so will I.
We are gearing up for our little man's big night this Saturday! (http://www.ashtonscircleofhope.net) There have been a lot of great people working hard to make this event possible and I want you all to know I really appreciate everything! I feel like I sound like a broken record...I say it so much, but I don't know what else to say! Words just aren't enough. I am so looking forward to seeing friends from near and far...I feel like its prom night or something! How silly!
Ashton has seen his banner hanging out in front of the sport center and at first he wouldn't look at it. Now he looks and talks and asks when his skate party is....he is getting excited too! He's also going to sleep later each night so its looking more and more like he will be there, hooray!
Another thing...Ashton's cause on facebook has 180 members now! That just blows me away....
So, 2 days to go, then a really big party and then 6 whole weeks of relaxing, playing, laughing, hopefully some walking, and then some running! The way things are going for Ashton now....anything is possible.
Ashton is doing so great...these last few days he has wanted to go to the park. He rode his trike all over the place and is just thrilled with himself for being able to do that. I feel like summer vacation is just a couple of days away. That's how anxious I am to get to our break. It is so wonderful to know I can maybe take a shower in the morning again and drive the kids to school...just get back a bit of my old "normal" life. I have to say though, these last weeks haven't really been as bad as I thought. Everything went better then expected. I really thought Ashton would get sick with something and have to be hospitalized or just get a fever, but he has been just as healthy as can be. He does have his bouts of vomiting though and to tell you the truth he has been doing it more lately. The last two mornings he has thrown up as soon as he wakes, which makes me panic a bit because that is what his main symptom was before we knew he had a tumor. I actually talked to his dr. today because he threw up twice before we left and it just didn't seem right. She reassured me that it just isn't possible that the tumor has grown back and causing him to be sick. She did mention something about brain swelling, and that got me worried, but told me most likely it is because his anti-nausea meds have worn off. She called me tonight just to let me know that there is no way he has any swelling, she had been under the impression that he had a shunt and sometimes they can malfunction, but that isn't the case. So, I feel better. I'm so lucky to have such a great dr. to communicate with! :) She will be seeing Ashton tomorrow for a check up just to be on the safe side, but I think he is going to be OK.
After Thursday it will be pretty much watch and wait in regards to getting the feeding tube removed. They want him eating before they take it out and unfortunately Ashton doesn't want to eat because it is in. I'm hoping he gets a big enough appetite and won't care that its there. He really will feel much better once its out and so will I.
We are gearing up for our little man's big night this Saturday! (http://www.ashtonscircleofhope.net) There have been a lot of great people working hard to make this event possible and I want you all to know I really appreciate everything! I feel like I sound like a broken record...I say it so much, but I don't know what else to say! Words just aren't enough. I am so looking forward to seeing friends from near and far...I feel like its prom night or something! How silly!
Ashton has seen his banner hanging out in front of the sport center and at first he wouldn't look at it. Now he looks and talks and asks when his skate party is....he is getting excited too! He's also going to sleep later each night so its looking more and more like he will be there, hooray!
Another thing...Ashton's cause on facebook has 180 members now! That just blows me away....
So, 2 days to go, then a really big party and then 6 whole weeks of relaxing, playing, laughing, hopefully some walking, and then some running! The way things are going for Ashton now....anything is possible.
Tuesday, January 20, 2009
late nights and emotions
I did something last night I was told not to do. As I sat up late, waiting for Ashton to finish getting his water fed through his pump, I sat online reading another blog about a boy with a similar tumor who had passed away. I don't know why I did that. It was actually a link on a cancer message board and once I clicked on it, I couldn't stop reading. I had to finish the whole story to see how it turned out and man it was sad. So, as I tried to fall asleep last night, which really didn't go over to well, I thought about how I wanted to talk to Ashton's dr again. I wanted her to reassure me that things were going to be ok or at least to tell me why she thought they would be. I had a dream that I got to talk to her and asked why she thought he would be just fine....something she actually told me about 2 weeks ago.....in my dream she looked at me funny and said "I never said that". Then I woke up.....
I got about 4 hours of sleep and I am a wreck when I don't get 8 so basically I woke up crying just believeing this poor boys story would soon be ours. The thing about this boy is he had all his treatment and had many many scans that showed no cancer years later. Then 3 years after the first tumor, two more grew back. He went downhill from there. I was bound and determined to talk to the dr. today just to get a grip and clear my mind. Finally as we were leaving LPCH she called. She is the sweetest...she has an 11 month old baby boy so she really can relate to another "worried" mom. She told me that she truly believed Ashton would be ok. She said he is tolerating his treatment so well, and is otherwise a perfectly healthy boy. She told me she has alot of experience with Medulloblastoma, that it is actually the most common cancerous brain tumor in children and that most kids are high risk, like Ashton. I had no idea...I really thought we were the worst off. She went on to say that there is no reason for him not to be able to be cured from this....but, if something should happen....like a recurrance, then things would be more dire. His chances of survival would be much smaller and she would be completely honest with me about that right away. She told me that this is why he is getting such aggressive treatment right now...this is the one big shot at getting this thing in Ashton's head. She thinks he will be fine...she thinks he will be fine....she thinks he will be fine....I need to repeat that over and over each night. Even though the recurrance scares the heck out of me, I need to focus on the fact that she is very confidant about Ashton and has much hope for him. By the way, she told me that the tumor this other boy had was alot different from Ashtons...they can be in parts of the brain that are harder to treat. I need to not compare stories....I need to stay off the internet!
Lesson learned!
A friend of mine dropped a bag of stuff for Ashton on the porch today. Some healing cream for his skin and a bunch of wrist bands that say "Ashton's circle of hope" I can't believe he has his names on these bands! That is so cool! I believe they will be passing them out at the skate night or selling them...not sure which. Also, I had a phone interview with a reporter from the Press Banner yesterday. He said he was going to do a small story on Ashton along with an announcement of the Skate for Ashton Sake fundraiser. It should be in this Friday's edition so keep a look out.
Ashton was really sleepy today. He had a great weekend, he ended up taking 6 steps on his own on Monday so he is really making progress. Today though he was too tired. But, his smile is bright and his color is good and amazingly his white blood cell count was 5.4! That is up from Friday which was 1.2. A normal child has a WBC between 6 and 12 so Ashton is almost normal!! Those shots I had to give him each day this weekend really worked. He also doesn't need a transfusion again or a dose of platelets. Thats for now though...lets see what they say on Friday. He counts should not go down much anymore because he is just getting the boost of radiation to the brain at the spot where the tumor was. No more spine and full brain. Yipee! Maybe he will be feeling well enough to make it to his big night on the 31st. Even if its only for a few minutes, I will be so happy.
I got about 4 hours of sleep and I am a wreck when I don't get 8 so basically I woke up crying just believeing this poor boys story would soon be ours. The thing about this boy is he had all his treatment and had many many scans that showed no cancer years later. Then 3 years after the first tumor, two more grew back. He went downhill from there. I was bound and determined to talk to the dr. today just to get a grip and clear my mind. Finally as we were leaving LPCH she called. She is the sweetest...she has an 11 month old baby boy so she really can relate to another "worried" mom. She told me that she truly believed Ashton would be ok. She said he is tolerating his treatment so well, and is otherwise a perfectly healthy boy. She told me she has alot of experience with Medulloblastoma, that it is actually the most common cancerous brain tumor in children and that most kids are high risk, like Ashton. I had no idea...I really thought we were the worst off. She went on to say that there is no reason for him not to be able to be cured from this....but, if something should happen....like a recurrance, then things would be more dire. His chances of survival would be much smaller and she would be completely honest with me about that right away. She told me that this is why he is getting such aggressive treatment right now...this is the one big shot at getting this thing in Ashton's head. She thinks he will be fine...she thinks he will be fine....she thinks he will be fine....I need to repeat that over and over each night. Even though the recurrance scares the heck out of me, I need to focus on the fact that she is very confidant about Ashton and has much hope for him. By the way, she told me that the tumor this other boy had was alot different from Ashtons...they can be in parts of the brain that are harder to treat. I need to not compare stories....I need to stay off the internet!
Lesson learned!
A friend of mine dropped a bag of stuff for Ashton on the porch today. Some healing cream for his skin and a bunch of wrist bands that say "Ashton's circle of hope" I can't believe he has his names on these bands! That is so cool! I believe they will be passing them out at the skate night or selling them...not sure which. Also, I had a phone interview with a reporter from the Press Banner yesterday. He said he was going to do a small story on Ashton along with an announcement of the Skate for Ashton Sake fundraiser. It should be in this Friday's edition so keep a look out.
Ashton was really sleepy today. He had a great weekend, he ended up taking 6 steps on his own on Monday so he is really making progress. Today though he was too tired. But, his smile is bright and his color is good and amazingly his white blood cell count was 5.4! That is up from Friday which was 1.2. A normal child has a WBC between 6 and 12 so Ashton is almost normal!! Those shots I had to give him each day this weekend really worked. He also doesn't need a transfusion again or a dose of platelets. Thats for now though...lets see what they say on Friday. He counts should not go down much anymore because he is just getting the boost of radiation to the brain at the spot where the tumor was. No more spine and full brain. Yipee! Maybe he will be feeling well enough to make it to his big night on the 31st. Even if its only for a few minutes, I will be so happy.
Saturday, January 17, 2009
The light at the end of the tunnel.
Only 8 treatment days left before Ashton's 6 week break! I can't wait!
Ashton is over the biggest part of Radiation but is still feeling the effects.
His head is really red and he has a bright red stripe running down his front and
his back. The skin there is so red and peeley and very tender. He is handling it
pretty well...not complaining too much, just says its itchy. It is so nice to spend a
day at home resting....I feel like this past week was very busy. He does have to
have a shot each day this weekend, and I have to give them to him. Thats not so fun.
We have to do that until his white cell counts come back up. Hopefully by Wednesday.
The really big news to share is he took 4 steps on his own today!! He was holding on to his
motor car and let go and walked to me! My hope is he feels good enough tomorrow and Monday
to do more walking because on the week days he just wants to lay in bed after the hospital.
I wanted to say thank you to the friends who stood after school this week and sold tickets to the skate night and thank you to Herb Gunderson for making the banner that is hanging outside the sport center. It is so sweet to see! By the way, the banner won't be at the intersection of Mt. Hermon and SV drive after all. Instead it will be outside the sport center until skate night so if you drive by, take a look! There were some issues with tax i.d. numbers and stuff, but really the best place for it is outside the actual place were the event will be held. I can't wait!
Ashton is over the biggest part of Radiation but is still feeling the effects.
His head is really red and he has a bright red stripe running down his front and
his back. The skin there is so red and peeley and very tender. He is handling it
pretty well...not complaining too much, just says its itchy. It is so nice to spend a
day at home resting....I feel like this past week was very busy. He does have to
have a shot each day this weekend, and I have to give them to him. Thats not so fun.
We have to do that until his white cell counts come back up. Hopefully by Wednesday.
The really big news to share is he took 4 steps on his own today!! He was holding on to his
motor car and let go and walked to me! My hope is he feels good enough tomorrow and Monday
to do more walking because on the week days he just wants to lay in bed after the hospital.
I wanted to say thank you to the friends who stood after school this week and sold tickets to the skate night and thank you to Herb Gunderson for making the banner that is hanging outside the sport center. It is so sweet to see! By the way, the banner won't be at the intersection of Mt. Hermon and SV drive after all. Instead it will be outside the sport center until skate night so if you drive by, take a look! There were some issues with tax i.d. numbers and stuff, but really the best place for it is outside the actual place were the event will be held. I can't wait!
Wednesday, January 14, 2009
Once again...a day of surprises.
We had a 12 hour day today. We left our house at 6:30 in the morning and got home at
6:30 in the evening. We actually thought we would be leaving the hospital rather early because he got in early for radiation. While Pat and I were eating in the cafeteria, Ashton's wonderful doctor, Michelle Monje, came walking in looking for us. She had got the results of his blood work from a few hours earlier and wanted him to have a transfusion today, immediately after he woke. His red blood cell count had dropped to the point where one was needed.
That was fine for us...Wednesdays are the days Pat comes with me and my mom picks the kids up at school because they have half days. It originally started because Ashton would still be having a nap on those days and she wanted to have the grandkids for the afternoon. It works well because she does need a break during the week. She has been getting up early and coming with me...thank you Mom!
We got to the day hospital and had to calm Ashton down a bit because he was still feeling some effects of the anesthesia. But, it is comfortable there, bed, blankets, flat screen TV...we weren't complaining. The transfusion would actually take 3 hours to give to him so we called to let our family know we would be a bit late. He did really well and he seemed to get color back in his cheeks almost immediately. He did have much more energy also. Yesterday was a very, very tired day for him. He didn't even want to watch TV. He just rested in bed all day. Today though, he was sitting up in bed playing, eating ice chips and licking the salt off saltine crackers. That is the most food to touch his mouth in weeks.
Ashton was having low white cell counts last week too so Saturday and Sunday I got to give him a shot to boost them back up. It was pretty traumatic for him. I got to practice on a nurse on Friday...she actually let me poke her with a needle full of saline to get the feel of things. What a brave lady...but it worked. I felt confident enough to do it to Ashton the next day. I had always wanted to be a nurse, but not for my own child. This experience so far has made me start thinking of doing that again. Or maybe just volunteering my time for an organization like Jacob's Heart. I feel such a strong need to help others who are and will be going through this. But, I'm jumpin the gun a bit here....I need to focus on Ashton getting cured first. After that, I will decide what to do.
We found out today that Ashton' s official end date is the 29th instead of the 28th.
They had forgotten about the time he was going to have radiation but they decided to
reposition him instead. So, that's OK....10 more days. And the greatest thing is we get to celebrate the end in a huge way, with all our friends at the skate night event on the 31st.
There will be a banner hanging on the corner of Scotts Valley Dr and Mt. Hermon Rd advertising it. I am so amazed at the lengths people go to for others...Not much good can come out of this whole experience with cancer, but so far there has been something that I had no idea about...the hearts of others, they can be huge! Thank you all!
6:30 in the evening. We actually thought we would be leaving the hospital rather early because he got in early for radiation. While Pat and I were eating in the cafeteria, Ashton's wonderful doctor, Michelle Monje, came walking in looking for us. She had got the results of his blood work from a few hours earlier and wanted him to have a transfusion today, immediately after he woke. His red blood cell count had dropped to the point where one was needed.
That was fine for us...Wednesdays are the days Pat comes with me and my mom picks the kids up at school because they have half days. It originally started because Ashton would still be having a nap on those days and she wanted to have the grandkids for the afternoon. It works well because she does need a break during the week. She has been getting up early and coming with me...thank you Mom!
We got to the day hospital and had to calm Ashton down a bit because he was still feeling some effects of the anesthesia. But, it is comfortable there, bed, blankets, flat screen TV...we weren't complaining. The transfusion would actually take 3 hours to give to him so we called to let our family know we would be a bit late. He did really well and he seemed to get color back in his cheeks almost immediately. He did have much more energy also. Yesterday was a very, very tired day for him. He didn't even want to watch TV. He just rested in bed all day. Today though, he was sitting up in bed playing, eating ice chips and licking the salt off saltine crackers. That is the most food to touch his mouth in weeks.
Ashton was having low white cell counts last week too so Saturday and Sunday I got to give him a shot to boost them back up. It was pretty traumatic for him. I got to practice on a nurse on Friday...she actually let me poke her with a needle full of saline to get the feel of things. What a brave lady...but it worked. I felt confident enough to do it to Ashton the next day. I had always wanted to be a nurse, but not for my own child. This experience so far has made me start thinking of doing that again. Or maybe just volunteering my time for an organization like Jacob's Heart. I feel such a strong need to help others who are and will be going through this. But, I'm jumpin the gun a bit here....I need to focus on Ashton getting cured first. After that, I will decide what to do.
We found out today that Ashton' s official end date is the 29th instead of the 28th.
They had forgotten about the time he was going to have radiation but they decided to
reposition him instead. So, that's OK....10 more days. And the greatest thing is we get to celebrate the end in a huge way, with all our friends at the skate night event on the 31st.
There will be a banner hanging on the corner of Scotts Valley Dr and Mt. Hermon Rd advertising it. I am so amazed at the lengths people go to for others...Not much good can come out of this whole experience with cancer, but so far there has been something that I had no idea about...the hearts of others, they can be huge! Thank you all!
Friday, January 9, 2009
What a week!!
This was the first full week of therapy for Ashton and he has been so brave. Every week so far has had a holiday or there was the week where he skipped radiation, so this week has
been particularly tough. A full 5 days in a row and it just happens to be the week where he
is having full radiation beams to the brain and spine. He is doing ok...his face is pretty red and he has a red streak down his chest and back, but that will fade hopefully by tomorrow. The radiation will taper down for the next couple of weeks until treatment is over, so we are over the hump. Funny thing is he was way sleepier last week then this one. He was going to bed as early as 4pm where this week he has been up much later..he was even up till 8:30 last night, and I had to make him go to bed. The dr. realized that he could have been dehydrated last week so this week he has been getting fluids as he gets chemo and he really seems to be feeling better.
Wednesday was a day that I will remember forever. Our doctor gave us great hope.
I was telling her about a book I had received from a woman from Jacobs Heart. It was
all about Brain and Spinal cord tumors. It talked about everything there is to do with them and I found it to be pretty helpful to me...especially where they said that Medulloblastoma, Ashtons Cancer, is very sensitive to radiation and it is pretty much the power house for getting rid of it.
Our dr. told us it was true, that it is actually one of the few tumors that has really positive results from radiation. Then what she said made my day, my week, my year. She said, " I wouldn't say this to you if I didn't really feel this to be true, but I think Ashton is going to do just fine." She said she can't say that to everyone. My eyes filled with tears and my heart skipped a beat and pretty much I was on cloud 9 for the rest of the day. I believe it has something to do with the clinical trial he is on, or they must know something. I know that no one, not even the doctors really know for sure what will happen, but something about her optimism has just given me such great hope for the outcome I want so desperately. Of course though, my emotions can go from one extreme to the next. Later that same day Pat took some photos of Ashton and Ashton wanted to see them, so we scrolled through a bunch. There were still some short videos on his camera of our summer trip to Disneyland. The few I saw were of Ashton, running, playing, riding rides and smiling and waving. They ruined my night...I was in tears for the rest of the day. I think I need to wait a bit longer before viewing things like that..it's too painful right now.
As I have mentioned before, an amazing group of friends have set up a Skate Night event for Ashton. They are selling tickets now and I am getting so excited. I still hope Ashton will be able to be there, his treatment ends the 28th or the 29th of this month...two days before the big night. Here is the web address with the information: http://www.ashtonscircleofhope.net
Please keep thinking positive thoughts for us, we still need them.
been particularly tough. A full 5 days in a row and it just happens to be the week where he
is having full radiation beams to the brain and spine. He is doing ok...his face is pretty red and he has a red streak down his chest and back, but that will fade hopefully by tomorrow. The radiation will taper down for the next couple of weeks until treatment is over, so we are over the hump. Funny thing is he was way sleepier last week then this one. He was going to bed as early as 4pm where this week he has been up much later..he was even up till 8:30 last night, and I had to make him go to bed. The dr. realized that he could have been dehydrated last week so this week he has been getting fluids as he gets chemo and he really seems to be feeling better.
Wednesday was a day that I will remember forever. Our doctor gave us great hope.
I was telling her about a book I had received from a woman from Jacobs Heart. It was
all about Brain and Spinal cord tumors. It talked about everything there is to do with them and I found it to be pretty helpful to me...especially where they said that Medulloblastoma, Ashtons Cancer, is very sensitive to radiation and it is pretty much the power house for getting rid of it.
Our dr. told us it was true, that it is actually one of the few tumors that has really positive results from radiation. Then what she said made my day, my week, my year. She said, " I wouldn't say this to you if I didn't really feel this to be true, but I think Ashton is going to do just fine." She said she can't say that to everyone. My eyes filled with tears and my heart skipped a beat and pretty much I was on cloud 9 for the rest of the day. I believe it has something to do with the clinical trial he is on, or they must know something. I know that no one, not even the doctors really know for sure what will happen, but something about her optimism has just given me such great hope for the outcome I want so desperately. Of course though, my emotions can go from one extreme to the next. Later that same day Pat took some photos of Ashton and Ashton wanted to see them, so we scrolled through a bunch. There were still some short videos on his camera of our summer trip to Disneyland. The few I saw were of Ashton, running, playing, riding rides and smiling and waving. They ruined my night...I was in tears for the rest of the day. I think I need to wait a bit longer before viewing things like that..it's too painful right now.
As I have mentioned before, an amazing group of friends have set up a Skate Night event for Ashton. They are selling tickets now and I am getting so excited. I still hope Ashton will be able to be there, his treatment ends the 28th or the 29th of this month...two days before the big night. Here is the web address with the information: http://www.ashtonscircleofhope.net
Please keep thinking positive thoughts for us, we still need them.
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