Today, Alex had a Chemo appointment. He was thrilled to hear that he didn't have to get the leg pokes (PEG Asparaganaise). Today, he got Vincristine and Methotrexate through his PORT - plus some Zofran because the Methotrexate can make him nauseaus. He was in a jolly mood, since his Chemo Pal, Taylor was there with him.
They put together a helicopter during the appointment, hardly stoping when the nurse accessed his PORT.
It was good to see Alex in such high spirits!
His counts were really good - his ANC was 1200 - down a bit from 10 days ago, but still high enough that we don't need to restrict any of his activities, which is good since he has two birthday parties to attend tomorrow (his friend Chandler, and his birth-brother Ayden).
Alex's imagination is just taking off, and we are having great times here at home fighting Droids (from Star Wars - Clone Wars). He runs around wearing his 49ers helmet, and a "blaster" he made from tinker-toys - it's good to see him act like a typical "almost" 4 year old! The funny part, is that our daughter, Tessa-Lynn who is just 13 months old, just started walking, and now grabs toys, and makes "blaster" noises (pshew pshew) just like her big brother - oh, boy (er, girl).
The doctors have told us that as the 10 day intervals for Chemo treatments continue in this new phase (Delayed Intensification), the amount of chemo will increase, which will eventually drop his counts again, and we'll be back on "alert" for fevers that could land us back in the hospital. So, for now, we are enjoying the high counts, and the "freedom" it gives us to be a more "normal" family.
Friday, March 27, 2009
Thursday, March 26, 2009
Make-A-Wish
We just got the call that Make-A-Wish had their final approval for a trip to Disney World! We'll be going some time in October - I can't wait!
It looks like we'll be staying at "Give Kids the World" http://www.gktw.org/ which I have heard is an amazing place in and of itself!
Alex is really excited - we can't wait to go!
It looks like we'll be staying at "Give Kids the World" http://www.gktw.org/ which I have heard is an amazing place in and of itself!
Alex is really excited - we can't wait to go!
Wednesday, March 25, 2009
Slide Show
For those of you who know my husband, understand that he is a technology aficionado (geek). We have this media center that he is working on. It has this great feature that shows a slide show of all our digital pictures on our TV. It's so amazing to look back at these pictures - some before kids, most after kids, and to remember where each picture was taken.
I have gotten so used to Alex with very little hair, that it actually looks strange to see hair on his head. We have a lot of great memories - and we'll be building many more, and taking a lot of pictures in the future. Once this battle is over, and Alex has peace in his body - and we have peace in our family...
Peace to everyone tonight...
I have gotten so used to Alex with very little hair, that it actually looks strange to see hair on his head. We have a lot of great memories - and we'll be building many more, and taking a lot of pictures in the future. Once this battle is over, and Alex has peace in his body - and we have peace in our family...
Peace to everyone tonight...
Monday, March 23, 2009
GI Tract
Poor Alex - the Chemo is really doing a number on his GI tract. I am doing a lot of laundry trying to keep up with the accidents he's having. He is also nauseous quite a bit - so we're giving him Zofran as often as we can to help alleviate the incidents of getting sick. Unfortunately, there really isn't anything we can give him for the other end...
He's quite the trooper, and even ventured out to his friend Erik's birthday party today (which was great!). To some that don't know him well, he may have seen perfectly fine - but to his mother's trained eye, I could tell he wasn't 100% - more like 75%...
Early bedtime tonight - he missed his nap. Since we are on "spring break" this week - he doesn't have school - so we will be finding fun things to do around the house (wish me luck!)
He's quite the trooper, and even ventured out to his friend Erik's birthday party today (which was great!). To some that don't know him well, he may have seen perfectly fine - but to his mother's trained eye, I could tell he wasn't 100% - more like 75%...
Early bedtime tonight - he missed his nap. Since we are on "spring break" this week - he doesn't have school - so we will be finding fun things to do around the house (wish me luck!)
Saturday, March 21, 2009
Tired Alex
The Chemo is doing it's "thing", and Alex is tired, and not eating much. He's napping now - falling asleep in the car with Eric after a trip to Home Depot. Eric said he sat in the shopping cart the whole time. Those of you who know Alex understand how bad he must be feeling to not want to stroll up and down the aisles at his favorite store looking for forklifts.
I'm so grateful that he got a big play date with so many of his friends while he was still feeling good. The doctors said his counts shouldn't drop for a few more weeks, and he isn't getting another dose of Chemo until this Friday. Hopefully, he will feel better soon. In the meantime, if you see him, give him a big smile - he'll return the favor...
I'm so grateful that he got a big play date with so many of his friends while he was still feeling good. The doctors said his counts shouldn't drop for a few more weeks, and he isn't getting another dose of Chemo until this Friday. Hopefully, he will feel better soon. In the meantime, if you see him, give him a big smile - he'll return the favor...
Wednesday, March 18, 2009
A Great Day
Today, Alex had a bunch of his friends over to play - we had 11 kids - 9 of which were mobile having fun.
It felt so good to have a "normal" day - it brought back a lot of memories of when Alex was little, and our little playgroup met every week...we are lucky to have such good friends to help us through this - I honestly forgot about the cancer for the first time today.
After the last of our friends left, Eric came home, and we went for a walk around the neighborhood. Then, we ate dinner, and Alex was asleep on the couch by 6:45!
Thanks to Erin, Erik, Lukas, Annika, Joelle, Connor, Kaitlyn, Melissa, Chandler, Lincoln, Taegen, Lakyn, and Kolby for the great day!
It felt so good to have a "normal" day - it brought back a lot of memories of when Alex was little, and our little playgroup met every week...we are lucky to have such good friends to help us through this - I honestly forgot about the cancer for the first time today.
After the last of our friends left, Eric came home, and we went for a walk around the neighborhood. Then, we ate dinner, and Alex was asleep on the couch by 6:45!
Thanks to Erin, Erik, Lukas, Annika, Joelle, Connor, Kaitlyn, Melissa, Chandler, Lincoln, Taegen, Lakyn, and Kolby for the great day!
The PEG
After a great day of school, and helping me get some groceries at the store, Alex fell asleep on the way home. I carried him into the house, where he napped for about 1 1/2 hours until it was time to go to the doctors office.
My mom came over to watch Tessa, and I woke Alex up and put him in the car. He continued to snooze all the way to the hospital. He protested a little when I put him in the stroller for the ride up to the clinic.
I expected a really grumpy guy - but yet again, he fooled me, and was his goofy self at the clinic. We got the cream on his thighs right away, and then went to the playroom for 1/2 hour while the cream numbed his legs. He played a video game while we waited for the dreaded needles. With very little resistance, Alex went back to the room to submit to the PEG shots. I sat on the bed, with him in my lap. The nurses told me to hold his arms, expecting a fight. The nurses counted to three, and plunged the needles into his small thighs. As they were pushing the plungers down, they both looked at me with big eyes. Alex whimpered once, and took a deep breath. That was all the reaction he gave. They praised him, and said he was braver than most of the teenagers in the clinic. The nurses put a bandage on each leg, and then we went back to the playroom for an hour, while they monitored him for any allergic reaction to the PEG Asparaganaise.
Alex played on the video game machine for the hour wait, and then we went home. This little boy inspires me with his strength and maturity when it comes to his illness. He handles himself with a dignity and poise that I would be surely lacking in his place.
Last night, before bed - I was telling him that I was proud of how brave he was, and that it is OK to cry if he needs to - it worries me sometimes about how stoic he is. We have the names of a few play therapists, and I think we are going to set up an appointment for Alex to start seeing one - just to make sure he isn't bottling all of this up.
We chanted "Go away cancer - we don't want you here" a few times before Alex's bedtime last night. If only it was that easy...
My mom came over to watch Tessa, and I woke Alex up and put him in the car. He continued to snooze all the way to the hospital. He protested a little when I put him in the stroller for the ride up to the clinic.
I expected a really grumpy guy - but yet again, he fooled me, and was his goofy self at the clinic. We got the cream on his thighs right away, and then went to the playroom for 1/2 hour while the cream numbed his legs. He played a video game while we waited for the dreaded needles. With very little resistance, Alex went back to the room to submit to the PEG shots. I sat on the bed, with him in my lap. The nurses told me to hold his arms, expecting a fight. The nurses counted to three, and plunged the needles into his small thighs. As they were pushing the plungers down, they both looked at me with big eyes. Alex whimpered once, and took a deep breath. That was all the reaction he gave. They praised him, and said he was braver than most of the teenagers in the clinic. The nurses put a bandage on each leg, and then we went back to the playroom for an hour, while they monitored him for any allergic reaction to the PEG Asparaganaise.
Alex played on the video game machine for the hour wait, and then we went home. This little boy inspires me with his strength and maturity when it comes to his illness. He handles himself with a dignity and poise that I would be surely lacking in his place.
Last night, before bed - I was telling him that I was proud of how brave he was, and that it is OK to cry if he needs to - it worries me sometimes about how stoic he is. We have the names of a few play therapists, and I think we are going to set up an appointment for Alex to start seeing one - just to make sure he isn't bottling all of this up.
We chanted "Go away cancer - we don't want you here" a few times before Alex's bedtime last night. If only it was that easy...
Monday, March 16, 2009
Doctors Appointment
Today, Alex had a doctors appointment - and boy, did he NOT want to go! After a few weeks of sparse visits, he was not ready to return to the routine (which after tomorrow will be approximately every 10 days).
After I finally got him dressed and out the door, he seemed to change his mind-set, and he was talking about taking the Tram up the hill. We had time, so I parked down by the river, put him in the stroller, and up, up, and away we flew to the hospital.
Alex said that after his appointment, he wanted to get something at the gift shop for Tessa-Lynn. He is so thoughtful, and considerate - he didn't want anything for himself, just something for her. I've been told that childhood cancer survivors are some of the greatest, most empathetic human beings - as his mother, I know I'm biased, but I see that in him already, and we still have another 20 months of treatment.
To be honest, I am exhausted today. I fell asleep in the waiting room, and again while Alex was getting his Lumbar Puncture (LP). After the doctor woke me up to tell me everything was fine, the nurse hooked Alex up to the IV, and gave him his Vincristine and Methotrexate. Soon after, we were able to go home and eat (Alex hadn't eaten anything since 7am). But first, Alex reminded me that we needed to stop in the gift shop. He found a super soft stuffed animal kitty for her. When Tessa-Lynn woke up from her nap after we got home, Alex gave her the kitty, and she gave him the biggest smile! He's such a super big brother! When Eric got home from work, I immediately fell asleep while Eric watched the kids and made dinner (I know, I know, I have the best husband ever!) After dinner, I had a preschool meeting to go to, so again, Eric watched the kids while I went.
When I got home, Alex told me that he missed me, and loved me, and gave me a hug - there is no better feeling in the whole world!
Tomorrow, Alex has school, and then the dreaded PEG shots in his thighs at 3pm. He's amazing - we talk about the shots, and he says he doesn't like them, but he knows he has to have them. He is wise way beyond his years! I think I learn something new from him everyday.
The kids are asleep - I think I'll take the hint, and go to bed now too.
After I finally got him dressed and out the door, he seemed to change his mind-set, and he was talking about taking the Tram up the hill. We had time, so I parked down by the river, put him in the stroller, and up, up, and away we flew to the hospital.
Alex said that after his appointment, he wanted to get something at the gift shop for Tessa-Lynn. He is so thoughtful, and considerate - he didn't want anything for himself, just something for her. I've been told that childhood cancer survivors are some of the greatest, most empathetic human beings - as his mother, I know I'm biased, but I see that in him already, and we still have another 20 months of treatment.
To be honest, I am exhausted today. I fell asleep in the waiting room, and again while Alex was getting his Lumbar Puncture (LP). After the doctor woke me up to tell me everything was fine, the nurse hooked Alex up to the IV, and gave him his Vincristine and Methotrexate. Soon after, we were able to go home and eat (Alex hadn't eaten anything since 7am). But first, Alex reminded me that we needed to stop in the gift shop. He found a super soft stuffed animal kitty for her. When Tessa-Lynn woke up from her nap after we got home, Alex gave her the kitty, and she gave him the biggest smile! He's such a super big brother! When Eric got home from work, I immediately fell asleep while Eric watched the kids and made dinner (I know, I know, I have the best husband ever!) After dinner, I had a preschool meeting to go to, so again, Eric watched the kids while I went.
When I got home, Alex told me that he missed me, and loved me, and gave me a hug - there is no better feeling in the whole world!
Tomorrow, Alex has school, and then the dreaded PEG shots in his thighs at 3pm. He's amazing - we talk about the shots, and he says he doesn't like them, but he knows he has to have them. He is wise way beyond his years! I think I learn something new from him everyday.
The kids are asleep - I think I'll take the hint, and go to bed now too.
Sunday, March 15, 2009
Too Funny
There is this *really* obnoxious comercial up here for J G Wentworth - "It's my money, and I need it NOW" - Here is a link to the offending ad: http://www.jgwentworth.com/About/Advertising/Default.aspx?src=tv (It's My Money)
Anyway, of course, Alex has seen it, and as any 3 year old would do, repeats it, and repeats it...
So, the other day, Alex said he tummy was hurting (not unusual with the Chemo), and walked up to Eric and me and said:
"It's my Zofran, and I need it NOW" - just like they say it in the commercial. It was all Eric and I could do not to bust up laughing, as Alex was dead serious...
After composing ourselves, and explaining to Alex that it wasn't polite to demand his Zofran, and getting him to ask "politely", we gave Alex the medicine, and then took turns running into the other room to laugh.
Out of the mouths of babes...
Anyway, of course, Alex has seen it, and as any 3 year old would do, repeats it, and repeats it...
So, the other day, Alex said he tummy was hurting (not unusual with the Chemo), and walked up to Eric and me and said:
"It's my Zofran, and I need it NOW" - just like they say it in the commercial. It was all Eric and I could do not to bust up laughing, as Alex was dead serious...
After composing ourselves, and explaining to Alex that it wasn't polite to demand his Zofran, and getting him to ask "politely", we gave Alex the medicine, and then took turns running into the other room to laugh.
Out of the mouths of babes...
Saturday, March 14, 2009
A week in review
This was a quiet week. Well, as quiet as a home with an almost 4 year old and one year old can be.
Alex has been in great spirits this week - he was able to go to school both Tuesday and Thursday. He has also been playing with his (Eric's) remote control Mustang out in the court with our neighbors. (We are going to get him a bigger, nicer Remote Control car for his 4th birthday)
I completely messed up Alex's doctors appointments this week, and we ended up having to reschedule his Chemo for this coming Monday and Tuesday - I'm trying not to beat myself up over it, but it just kills me! I completely got the days wrong - oh well, it is what it is, and the doctors assure me it's ok...
We attended another Leukemia & Lymphoma Society support group last Monday night. We actually met another mom who's daughter is also a patient of Alex's Pediatrician. She was diagnosed only one month earlier with Acute Lymphoblastic Leukemia. I also got to finally meet Lani in person, who actually works for Alex's Pediatrician's office. Her 4-year old son Eli also has cancer. You can visit her son's website at: http://www.caringbridge.org/visit/eliwalker . I met her originally when I called the advise nurse for Tessa-Lynn, and she answered. It really is a small world. The topic for the meeting was "Dealing with Stress" - next month is "Post Traumatic Stress Disorder in Children with Cancer and in their Caregivers" - we'll get to take a test to see if we may have PTSD...hmmm...wouldn't it make more sense to have a test to see who *doesn't* have PTSD from a cancer diagnosis?
Anyhow, Alex has two Chemo appointments this week: Monday, a Lumbar Puncture, and Tuesday, the wonderful PEG shots in his thighs. Alex is such an amazing boy, I know that he will be such a brave boy for both appointments!
Alex has been in great spirits this week - he was able to go to school both Tuesday and Thursday. He has also been playing with his (Eric's) remote control Mustang out in the court with our neighbors. (We are going to get him a bigger, nicer Remote Control car for his 4th birthday)
I completely messed up Alex's doctors appointments this week, and we ended up having to reschedule his Chemo for this coming Monday and Tuesday - I'm trying not to beat myself up over it, but it just kills me! I completely got the days wrong - oh well, it is what it is, and the doctors assure me it's ok...
We attended another Leukemia & Lymphoma Society support group last Monday night. We actually met another mom who's daughter is also a patient of Alex's Pediatrician. She was diagnosed only one month earlier with Acute Lymphoblastic Leukemia. I also got to finally meet Lani in person, who actually works for Alex's Pediatrician's office. Her 4-year old son Eli also has cancer. You can visit her son's website at: http://www.caringbridge.org/visit/eliwalker . I met her originally when I called the advise nurse for Tessa-Lynn, and she answered. It really is a small world. The topic for the meeting was "Dealing with Stress" - next month is "Post Traumatic Stress Disorder in Children with Cancer and in their Caregivers" - we'll get to take a test to see if we may have PTSD...hmmm...wouldn't it make more sense to have a test to see who *doesn't* have PTSD from a cancer diagnosis?
Anyhow, Alex has two Chemo appointments this week: Monday, a Lumbar Puncture, and Tuesday, the wonderful PEG shots in his thighs. Alex is such an amazing boy, I know that he will be such a brave boy for both appointments!
Friday, March 6, 2009
Ear Infection and Fever
"You've got to be kidding, right?"
Nope.
Just 4 days after getting out of the hospital, Alex started complaining that his left ear was hurting. We gave him some Oxycodon (no Tylenol - it can mask a fever), and ate dinner. He didn't eat much, and wanted to sit on my lap for some "mommy time". Then, he started getting warmer, and more lethargic - oh, no...
I started taking his temperature every 5 minutes, and watched it steadily rise to the dreaded 100.4 threshold.
Since his ANC had only been 100 on Tuesday, we knew we would be asked to go to the Emergency Department (ED). So, at 7pm, I made the call, and my heart sank as the doctor told us to pack our things, we would most likely get admitted, and get to the ED right away.
We decided that Eric would stay with Tessa-Lynn, and I would take Alex up the hill.
I really like the new Doerenbecher ED - it is bright and cheery, and if you have to be in an ED, it's the place to be. BUT, the nurse who accessed Alex's Port did a *really* poor job. I know she doesn't do it all the time, like the clinic nurses, but man, she really messed up. First, she took 5 minutes to open the "access" supply bag, and then LEFT THE ROOM for 15 minutes - while Alex had to sit there and look at it - raising his already high anxiety level. Then, she puts the needle in, and can't get a blood return, so she starts WIGGLING the needle in his Port! Alex is whimpering on my lap, and I'm about ready to loose it! Finally, after a gruelling 5 minutes, she finally gets the blood draw to check his counts.
Unlike the clinic, which has it's own CBC machine, the blood from the ED must go to the central OHSU lab for processing. So, Alex and I tried our best to entertain ourselves while we waited, and waited...
Then, the doctor came in, and checked out Alex's ear - and sure enough, he has an ear infection! He gave Alex some Tylenol for the fever. Then, we waited and waited some more...
Guess What?
Alex's ANC was 1,300!!! The nurse gave Alex some antibiotics, and a prescription for Amoxicilin, and the doctor told us we could go home. Alex said "you have to de-access my Port first!" - The doctor chuckled, and offered Alex a job :-)
I carried Alex in from the car blissfully asleep at 11:30 last night.
It's good to be home...
Nope.
Just 4 days after getting out of the hospital, Alex started complaining that his left ear was hurting. We gave him some Oxycodon (no Tylenol - it can mask a fever), and ate dinner. He didn't eat much, and wanted to sit on my lap for some "mommy time". Then, he started getting warmer, and more lethargic - oh, no...
I started taking his temperature every 5 minutes, and watched it steadily rise to the dreaded 100.4 threshold.
Since his ANC had only been 100 on Tuesday, we knew we would be asked to go to the Emergency Department (ED). So, at 7pm, I made the call, and my heart sank as the doctor told us to pack our things, we would most likely get admitted, and get to the ED right away.
We decided that Eric would stay with Tessa-Lynn, and I would take Alex up the hill.
I really like the new Doerenbecher ED - it is bright and cheery, and if you have to be in an ED, it's the place to be. BUT, the nurse who accessed Alex's Port did a *really* poor job. I know she doesn't do it all the time, like the clinic nurses, but man, she really messed up. First, she took 5 minutes to open the "access" supply bag, and then LEFT THE ROOM for 15 minutes - while Alex had to sit there and look at it - raising his already high anxiety level. Then, she puts the needle in, and can't get a blood return, so she starts WIGGLING the needle in his Port! Alex is whimpering on my lap, and I'm about ready to loose it! Finally, after a gruelling 5 minutes, she finally gets the blood draw to check his counts.
Unlike the clinic, which has it's own CBC machine, the blood from the ED must go to the central OHSU lab for processing. So, Alex and I tried our best to entertain ourselves while we waited, and waited...
Then, the doctor came in, and checked out Alex's ear - and sure enough, he has an ear infection! He gave Alex some Tylenol for the fever. Then, we waited and waited some more...
Guess What?
Alex's ANC was 1,300!!! The nurse gave Alex some antibiotics, and a prescription for Amoxicilin, and the doctor told us we could go home. Alex said "you have to de-access my Port first!" - The doctor chuckled, and offered Alex a job :-)
I carried Alex in from the car blissfully asleep at 11:30 last night.
It's good to be home...
Tuesday, March 3, 2009
Mommy, I Love You
Tonight, Alex walked up to me, and said:
"Mommy, I love you...The doctors are making...I'm feeling much better"
Wow, that just took my breath away. He is so in tune to both Eric and me.
See, earlier today, I took Alex to school. I had his preschool Parent/Teacher conference, and as soon as I sat down, I started crying. I pretty much cried for the full 1/2 hour conference. His teacher said great things about Alex - and I just lost it! I'm sure I scared the next parent who was waiting to have her conference, as I walked out all red-eyed, runny-nosed, and puffy.
I got a cup of coffee, and composed myself before picking Alex up from school early for his doctors appointment.
Whew, we really have an amazing son!
"Mommy, I love you...The doctors are making...I'm feeling much better"
Wow, that just took my breath away. He is so in tune to both Eric and me.
See, earlier today, I took Alex to school. I had his preschool Parent/Teacher conference, and as soon as I sat down, I started crying. I pretty much cried for the full 1/2 hour conference. His teacher said great things about Alex - and I just lost it! I'm sure I scared the next parent who was waiting to have her conference, as I walked out all red-eyed, runny-nosed, and puffy.
I got a cup of coffee, and composed myself before picking Alex up from school early for his doctors appointment.
Whew, we really have an amazing son!
No Chemo This Week
Alex's ANC is still only 100 as of today - so we'll wait another week to make sure his numbers climb back up before starting "Interim Maintenance".
Part of me is glad for the reprieve, and part of me is chomping at the bit to start the next round as soon as possible...
Part of me is glad for the reprieve, and part of me is chomping at the bit to start the next round as soon as possible...
Sunday, March 1, 2009
Cross Your Fingers!
The doctors just came in - and if Alex stays fever-free today, they *might* let us go home TODAY - we'll see - my fingers are already cramping from crossing so hard!
You should see our room today - mass chaos - since Alex feels better, we are living in a room with a caged wild monkey!!!
You should see our room today - mass chaos - since Alex feels better, we are living in a room with a caged wild monkey!!!
ANC is 100
Whew! It's on the rise. Alex still has a bit of a temperature, so we aren't sure when we'll be getting out yet, but we are on the back-end of this stay!
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