Alex's counts were up to 749.7 - they need to be at 750 at the minimum to restart Chemo.
The doctors rounded up, and we were instructed to start 50% dosage for Alex's Chemo this week. Next week, we'll check again, to see if we can go up to 75%.
Tuesday, January 26, 2010
Friday, January 22, 2010
Light The Night 2010
Last night, I was very honored to go to the Leukemia & Lymphoma Society's Light the Night awards reception for 2009. Our team, Warriors 4 Alex earned over $3,000 last year, and we were recognized last night along with a number of other wonderful teams; all doing their part to help rid the world of blood cancer.
But not just blood cancer.
One of the most successful cancer drugs for Leukemia patients, was developed here in Oregon - with huge support from the Leukemia & Lymphoma Society (LLS). That drug is now being studied for brain cancers, and rare stomach cancers. It makes what they are doing all that more important. Not only that, but LLS has funded research that has discovered a toe-nail fungus cream that obliterates some forms of cancer in lab mice! A toe-nail fungus cream, people!
The highlight of the reception was the speech made by the 14 year old boy who was the "honored hero" for the Light the Night Walk here in Oregon. He was articulate, he was gentle, and he was empathetic. He has been cancer-free for over 9 years. I cried as I listened to him talk about his journey, and how he continues to do the Light the Night Walk in honor of those who are still battling the disease, and those who have lost the fight. Through my tears my vision blurred and I saw Alex up there, at age 14 - MUCH taller than me, and healthy. It did my heart some good to think about it. His Mother spoke about his diagnosis, and treatment. While the details were different, the common thread was there, weaving through her story. The idea that it only takes a moment to bring us to our knees - to make our heart stop, and for the oxygen to leave the room.
I left the reception feeling good, and energized about what LLS is doing to help people like Alex - and knowing that I was helping with that mission by raising money.
If you would like to join our team, or donate money to our team, please click the HERE to go to our 2010 Light the Night Team page.
But not just blood cancer.
One of the most successful cancer drugs for Leukemia patients, was developed here in Oregon - with huge support from the Leukemia & Lymphoma Society (LLS). That drug is now being studied for brain cancers, and rare stomach cancers. It makes what they are doing all that more important. Not only that, but LLS has funded research that has discovered a toe-nail fungus cream that obliterates some forms of cancer in lab mice! A toe-nail fungus cream, people!
The highlight of the reception was the speech made by the 14 year old boy who was the "honored hero" for the Light the Night Walk here in Oregon. He was articulate, he was gentle, and he was empathetic. He has been cancer-free for over 9 years. I cried as I listened to him talk about his journey, and how he continues to do the Light the Night Walk in honor of those who are still battling the disease, and those who have lost the fight. Through my tears my vision blurred and I saw Alex up there, at age 14 - MUCH taller than me, and healthy. It did my heart some good to think about it. His Mother spoke about his diagnosis, and treatment. While the details were different, the common thread was there, weaving through her story. The idea that it only takes a moment to bring us to our knees - to make our heart stop, and for the oxygen to leave the room.
I left the reception feeling good, and energized about what LLS is doing to help people like Alex - and knowing that I was helping with that mission by raising money.
If you would like to join our team, or donate money to our team, please click the HERE to go to our 2010 Light the Night Team page.
Wednesday, January 20, 2010
Off Chemo - Low Counts - Again!
Alex had his weekly counts check, and his ANC is actually LOWER than last week - AND he's been off Chemo for a week!?!? His ANC was only 300 - still in the danger zone. I'm really worried that he will get a fever, and wind up back in the hospital.
Alex's counts should be in the 750 - 1500 range while on the maintenance phase of his Chemo regiment. Because his numbers are so low, he is off Chemo completely this week, and the doctors want to re-check his counts next Monday. If they are still low, after two weeks off treatment, they will perform a genetic enzyme test to see if Alex is one of the really rare cases where his body just doesn't metabolize the Mercaptapurine Chemo; essentially allowing it to continuously obliterate his immune system, instead of just regulated blasts once a day.
If Alex *is* a carrier for that gene, then they will have to adjust the protocol. I'm scared of that, since this protocol has an 80 - 90% cure rate.
Right now, that is all we know. We just have to wait and see what his body does this next week. I try not to think about the fact that if he doesn't have this enzyme issue, then his body will have been Chemo free for two weeks - and so has his cancer...
We are torn between keeping him home, where we can control his environment more, and letting him go to school each day where he can be a normal kid, but also allowing him to be potentially exposed to the normally benign cold/flu/stomach bugs that for Alex would put him in the hospital. I am so grateful that Alex's class has been so conscientious about letting me know if a child is sick, and adhering so rigorously to the school sick policy - it sure makes us feel better about our decision to let him go to school!
Tonight, Alex fell asleep at 7:45 - really early for him - especially off treatment. I *really* hope he isn't getting sick...
Alex's counts should be in the 750 - 1500 range while on the maintenance phase of his Chemo regiment. Because his numbers are so low, he is off Chemo completely this week, and the doctors want to re-check his counts next Monday. If they are still low, after two weeks off treatment, they will perform a genetic enzyme test to see if Alex is one of the really rare cases where his body just doesn't metabolize the Mercaptapurine Chemo; essentially allowing it to continuously obliterate his immune system, instead of just regulated blasts once a day.
If Alex *is* a carrier for that gene, then they will have to adjust the protocol. I'm scared of that, since this protocol has an 80 - 90% cure rate.
Right now, that is all we know. We just have to wait and see what his body does this next week. I try not to think about the fact that if he doesn't have this enzyme issue, then his body will have been Chemo free for two weeks - and so has his cancer...
We are torn between keeping him home, where we can control his environment more, and letting him go to school each day where he can be a normal kid, but also allowing him to be potentially exposed to the normally benign cold/flu/stomach bugs that for Alex would put him in the hospital. I am so grateful that Alex's class has been so conscientious about letting me know if a child is sick, and adhering so rigorously to the school sick policy - it sure makes us feel better about our decision to let him go to school!
Tonight, Alex fell asleep at 7:45 - really early for him - especially off treatment. I *really* hope he isn't getting sick...
Thursday, January 14, 2010
Saturdays
I have been told I have an interesting perspective when looking at time. Some call it unique - others shake their heads and roll their eyes.
I divide my life into Saturdays.
Silly? Yes. Effective and grounding? Absolutely.
Weeks seem to go so fast, and the weekends - those precious two days that I get to spend with my kids and husband all together - seem to fly by at break-neck speed. Weekends are when we plan to get stuff done that we couldn't do during the week. They are the default days to catch-up, to say "Oh, drat - I'll do it this weekend". So, I count Saturdays to help me digest time.
For instance, there are only 49 more Saturdays to get all my Christmas shopping done. Only five more Saturdays until my baby girl turns two. Alex turns five in only 14 more Saturdays. You get the idea.
My friend Erin asked me how many Saturdays until we are done with treatment. I hadn't even thought about it before that moment.
Cancer seemed never-ending, and something that I couldn't even divide into Saturdays. It's something that we deal with every day. There is no "I'll deal with Chemo this weekend", we are forced to battle this disease EVERY DAY.
So, I took a moment and looked it up. There are only 61 more Saturdays until Alex is projected to finish his Chemotherapy. How exciting! But, wait - I decided to break it up even more. Only 15 more steroid cycles. Only 15 more IV Chemo pushes. Only five more back pokes.
Wow. I saw the light at the end of the tunnel tonight for the first time. It's faint, but it's there if I squint a little. Every Saturday takes us one step closer to the end of treatment. We still have about 430 days left of oral Chemo, but being able to count Saturdays until he is done really helps put it all in perspective for me.
Thank you for the reminder Erin. It really helped!
I divide my life into Saturdays.
Silly? Yes. Effective and grounding? Absolutely.
Weeks seem to go so fast, and the weekends - those precious two days that I get to spend with my kids and husband all together - seem to fly by at break-neck speed. Weekends are when we plan to get stuff done that we couldn't do during the week. They are the default days to catch-up, to say "Oh, drat - I'll do it this weekend". So, I count Saturdays to help me digest time.
For instance, there are only 49 more Saturdays to get all my Christmas shopping done. Only five more Saturdays until my baby girl turns two. Alex turns five in only 14 more Saturdays. You get the idea.
My friend Erin asked me how many Saturdays until we are done with treatment. I hadn't even thought about it before that moment.
Cancer seemed never-ending, and something that I couldn't even divide into Saturdays. It's something that we deal with every day. There is no "I'll deal with Chemo this weekend", we are forced to battle this disease EVERY DAY.
So, I took a moment and looked it up. There are only 61 more Saturdays until Alex is projected to finish his Chemotherapy. How exciting! But, wait - I decided to break it up even more. Only 15 more steroid cycles. Only 15 more IV Chemo pushes. Only five more back pokes.
Wow. I saw the light at the end of the tunnel tonight for the first time. It's faint, but it's there if I squint a little. Every Saturday takes us one step closer to the end of treatment. We still have about 430 days left of oral Chemo, but being able to count Saturdays until he is done really helps put it all in perspective for me.
Thank you for the reminder Erin. It really helped!
Wednesday, January 13, 2010
The Routine
Predictably, Alex is wiped out tonight. It always happens at this point in the medication cycle. His tummy hurts, and he is exhausted. It has become "routine".
It stinks.
During the day, he works so hard to be normal, and just play and "be" a 4.5 year old. All that fun just takes it out of him in the evening.
With his counts low, he has a double whammy this week.
I'm signing off so I can go snuggle with him on the couch, and try and make the stomach pain go away...wish me luck.
It stinks.
During the day, he works so hard to be normal, and just play and "be" a 4.5 year old. All that fun just takes it out of him in the evening.
With his counts low, he has a double whammy this week.
I'm signing off so I can go snuggle with him on the couch, and try and make the stomach pain go away...wish me luck.
Tuesday, January 12, 2010
Monday, January 11, 2010
Low Counts And A Back Poke
Today was Alex's monthly appointment, and quarterly back poke. We left the house on time, and rode the tram up to the hospital. We ran into Taylor, Alex's Chemo Pal on the way up to the clinic. Alex was shy, and goofy, but got interested in her bag of goodies and the "Build-A-Bear" that she had pretty quickly.
Alex was a champ at getting his Port accessed, and we quickly received word that his ANC was only 400 - still really low. So, we are off of the Mercaptapurine Chemo this week. We were, however, green-lighted for the steroids (Prednisone) and the Lumbar Puncture to push the Chemo drug Methotrexate into his spinal fluid.
Alex was quite excited about the "sleepy milk", which is the medication called Propofol, which puts him under during the procedure. After his body went limp, I put him on the procedure table, and went outside the room to wait. The procedure went quickly, but Alex waking up is another story. That kid can sleep, and sleep! When he finally woke up, he was my goofy boy, all the way to the cafeteria, where he proceeded to eat just about everything I put in front of him!
After the clinic visit, and lunch at the cafeteria, we headed for Alex's school. He was clingy for a few minutes, and then was just fine, and enjoyed his school day.
We have to be careful since his counts are low, that he doesn't get sick. A fever right now would land him in the hospital for at least 48 hours. We are doing lots of hand washing, and hand sanitizer right now, hoping that his counts rise while off the Mercaptapurine, so we can get him back on this life-saving Chemo drug.
We go back in for a counts check next Tuesday to see which way his counts are trending. Up, baby, up!
Alex was a champ at getting his Port accessed, and we quickly received word that his ANC was only 400 - still really low. So, we are off of the Mercaptapurine Chemo this week. We were, however, green-lighted for the steroids (Prednisone) and the Lumbar Puncture to push the Chemo drug Methotrexate into his spinal fluid.
Alex was quite excited about the "sleepy milk", which is the medication called Propofol, which puts him under during the procedure. After his body went limp, I put him on the procedure table, and went outside the room to wait. The procedure went quickly, but Alex waking up is another story. That kid can sleep, and sleep! When he finally woke up, he was my goofy boy, all the way to the cafeteria, where he proceeded to eat just about everything I put in front of him!
After the clinic visit, and lunch at the cafeteria, we headed for Alex's school. He was clingy for a few minutes, and then was just fine, and enjoyed his school day.
We have to be careful since his counts are low, that he doesn't get sick. A fever right now would land him in the hospital for at least 48 hours. We are doing lots of hand washing, and hand sanitizer right now, hoping that his counts rise while off the Mercaptapurine, so we can get him back on this life-saving Chemo drug.
We go back in for a counts check next Tuesday to see which way his counts are trending. Up, baby, up!
Wednesday, January 6, 2010
Make-A-Wish Trip - Day 6
Saturday, October 31, 2009
I woke up on Halloween morning with Alex at the hospital. I ordered breakfast over the phone, and we waited, and waited, and waited. After one hour, I called down to the cafeteria to see what the problem was. They said that since we were in quarantine, they couldn't bring the food to our room (unlike the day before?!?!), and the food was delivered 1/2 hour earlier to the nurses station. Really? Great.
I walked the 20 or so steps from Alex's hospital room to the nurses station. There was Alex's breakfast, just sitting there. Powdered eggs congealing, pancakes turning to rubber, bacon wilting. The nurses (especially the one who was sitting directly in front of the food) said, "huh, sorry about that!" Hmmm, for a kid that could possibly have a bacterial infection, giving him luke-warm food that has been sitting out on the counter in a hospital didn't seem like such a great idea, but then again, I'm not a professional. Good grief!
Eric arrived shortly after Alex finished his new hot breakfast, and we started the waiting game. We had to wait to make sure that his counts were improving, so that our 6 hour pass would be granted.
Finally, around noon, a doctor had us come outside the hospital room to talk. My stomach dropped, thinking Alex's counts weren't good enough for the pass. Thankfully, I was wrong. The doctor just didn't want to put on all the infectious disease control garments to give us the news. We were getting the pass. The doctor choked up, and got tears in his eyes as he gave us the news. He said he sees a lot of Wish kids come through the hospital, and it isn't very often that he can give the pass. We were so relieved.
We came back inside the room and told Alex we were going to get out for a while, but that we had to come back that night. He was so excited, I'm not sure how much he actually heard. We were all so anxious to go trick-or-treating, but we had to wait - until nearly 3pm for them to let us leave, and head for the Magic Kingdom.
Here is a blog entry about our day: Trick Or Treat!
After the fun was over, Alex was quite sad to have to leave everyone, and head back to the hospital with Eric. We told him we would see him the next day, and that we hoped he would be coming home. We were right!
Next: Day 7 - Back to Give Kids The World, and Good-bye to Grandma Diana and Grandpa Bob
I woke up on Halloween morning with Alex at the hospital. I ordered breakfast over the phone, and we waited, and waited, and waited. After one hour, I called down to the cafeteria to see what the problem was. They said that since we were in quarantine, they couldn't bring the food to our room (unlike the day before?!?!), and the food was delivered 1/2 hour earlier to the nurses station. Really? Great.
I walked the 20 or so steps from Alex's hospital room to the nurses station. There was Alex's breakfast, just sitting there. Powdered eggs congealing, pancakes turning to rubber, bacon wilting. The nurses (especially the one who was sitting directly in front of the food) said, "huh, sorry about that!" Hmmm, for a kid that could possibly have a bacterial infection, giving him luke-warm food that has been sitting out on the counter in a hospital didn't seem like such a great idea, but then again, I'm not a professional. Good grief!
Eric arrived shortly after Alex finished his new hot breakfast, and we started the waiting game. We had to wait to make sure that his counts were improving, so that our 6 hour pass would be granted.
Finally, around noon, a doctor had us come outside the hospital room to talk. My stomach dropped, thinking Alex's counts weren't good enough for the pass. Thankfully, I was wrong. The doctor just didn't want to put on all the infectious disease control garments to give us the news. We were getting the pass. The doctor choked up, and got tears in his eyes as he gave us the news. He said he sees a lot of Wish kids come through the hospital, and it isn't very often that he can give the pass. We were so relieved.
We came back inside the room and told Alex we were going to get out for a while, but that we had to come back that night. He was so excited, I'm not sure how much he actually heard. We were all so anxious to go trick-or-treating, but we had to wait - until nearly 3pm for them to let us leave, and head for the Magic Kingdom.
Here is a blog entry about our day: Trick Or Treat!
Alex getting on his costume
Look! Candy!
Tessa-Lynn playing in Micky's Toontown
Alex & Eric soaring over the Magic Kingdom on Astro Orbiter during the fireworks
After the fun was over, Alex was quite sad to have to leave everyone, and head back to the hospital with Eric. We told him we would see him the next day, and that we hoped he would be coming home. We were right!
Next: Day 7 - Back to Give Kids The World, and Good-bye to Grandma Diana and Grandpa Bob
Monday, January 4, 2010
Alex on TV
A few weeks before Christmas, Make-A-Wish asked us if we would mind getting interviewed again for the Believe campaign with Macy's. Of course, we said "yes" - anything to help out the amazing organization that helped make Alex's wish come true!
I'm not a fan of this viewer, but it was the only way to get the footage. The clip of Alexander is the first one on the bottom left side of the viewer - with the red background. Click on it, and the video should play. Don't forget to hit the stop button after his interview, or the player will continue to the next segment.
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