Wednesday, February 27, 2008
February Flies By
Can't hardly believe that February has come and past. Time flies when you're having fun! Aidan was released Saturday afternoon on his own recognizance so we flew the coop. Sunday was hard but a good long visit from our friends perked him up tremendously. Today, Wed., he is like a new boy. The peaked face has some color and his appetite is back in full force. The three lbs lost have been regained and I know he feels better. He thinks I'm crazy asking him how he feels every 30 minutes or so but I can't help it.
I told him we need to have degrees of not feeling good so I can judge: "I'm bored" is the best you can get, "Good" is great, "I'm ok" means I'm probably going to have to lay down for a few minutes, "I don't feel good" probably means he has to go to the bathroom or eat something, and don't freak out but I told him if he REALLY and TRULY doesn't feel well he can say, "I feel like shit." He was utterly appalled when I said he should use such language to tell me how he feels. My argument is that he of any person I know has earned the right to use it and no one would be offended if it was necessary. I would say cancer earns the right to a few choice words no matter how old you are. He completely disagrees and knows I am going to Hell for sure.
Tomorrow, Thurs we will be back at clinic for blood draw. Hopefully more Neutraphils have appeared, he had none on Sat. and a few on Monday. Once again we are waiting for his total neutraphil count to be 1.0 (1000 cells per microliter) total his Chemo starts again.
Aidan had his first teaching lesson with Mr. Beyer (his actual 3rd grade teacher). He came to the house and they studied together for a few hours. Aidan was beaming afterwards. It was a boost he really needed. It was fun and he LOVES Mr. Beyer.
So, we are happy for the few days we have here at home and are thankful for every good day we have. We are also thankful for our wonderful family and friends who love and support us every day in some way.
Hope you enjoy the pictures.
love aimee
I told him we need to have degrees of not feeling good so I can judge: "I'm bored" is the best you can get, "Good" is great, "I'm ok" means I'm probably going to have to lay down for a few minutes, "I don't feel good" probably means he has to go to the bathroom or eat something, and don't freak out but I told him if he REALLY and TRULY doesn't feel well he can say, "I feel like shit." He was utterly appalled when I said he should use such language to tell me how he feels. My argument is that he of any person I know has earned the right to use it and no one would be offended if it was necessary. I would say cancer earns the right to a few choice words no matter how old you are. He completely disagrees and knows I am going to Hell for sure.
Tomorrow, Thurs we will be back at clinic for blood draw. Hopefully more Neutraphils have appeared, he had none on Sat. and a few on Monday. Once again we are waiting for his total neutraphil count to be 1.0 (1000 cells per microliter) total his Chemo starts again.
Aidan had his first teaching lesson with Mr. Beyer (his actual 3rd grade teacher). He came to the house and they studied together for a few hours. Aidan was beaming afterwards. It was a boost he really needed. It was fun and he LOVES Mr. Beyer.
So, we are happy for the few days we have here at home and are thankful for every good day we have. We are also thankful for our wonderful family and friends who love and support us every day in some way.
Hope you enjoy the pictures.
love aimee
Monday, February 18, 2008
Aidan's Back By Popular Demand
We've had a pretty good week at home after chemo. On Wed. Aidan finally started to feel better so Valentines Day was awesome for all of us. Aidan picked out a watch for Tito and got Mom a big box of chocolates. He also shared his chocolate rose with Mom. Aidan got a new cell phone and his favorite candy for Valentines. He's very excited about the cell phone. Now he can call Momfrom his hospital room when she is at Toys R Us to give specific directions on exactly which legos or bionicles to buy (since he has just about every single one made, it's hard to know which one to get). On Friday, Aidian did very well on his homework. He's pretty much caught up on his homework & we are hoping to get some time in with Mr. Beyer before chemo starts again. Friday also brought Dana, Fred & Lexi to play while Mom & Tito went out to celebrate Valentines Day. He had so much fun, they are an entertaining group. Thank you Dana, Fred & Lexi for some alone time with Tito.
On Saturday afternoon Aidan got platelets and started feeling lousy on Sunday morning. By the early evening, he had a fever of 102. This, of course, calls for check in. So, Aidan is back at Kaiser Permanent (as Aidan calls it) for hopefully only a few days (depends on how he's feeling and/or when his fever is gone). He's on a new antibiotic called Fortaz and of course on Tylenol. The antibiotics are starting to work, he's feeling a little better already. Mom's already had her trip to Toys R Us & Blockbuster. He's building his newest limited edition Bionicle (thank goodness for directions from Aidan) while watching some movies. He also called mom while she was at Vons today to ask for "a whole entire rotisserie chicken". When he was told they were out of them, his next request was pumpkin pie. The third phone call from Vons was to tell him they didn't have that either, he said "fine I'll settle for Oreo's & milk then." Let's hope this appetite continues as we pump up for the next round of chemo.
On Saturday afternoon Aidan got platelets and started feeling lousy on Sunday morning. By the early evening, he had a fever of 102. This, of course, calls for check in. So, Aidan is back at Kaiser Permanent (as Aidan calls it) for hopefully only a few days (depends on how he's feeling and/or when his fever is gone). He's on a new antibiotic called Fortaz and of course on Tylenol. The antibiotics are starting to work, he's feeling a little better already. Mom's already had her trip to Toys R Us & Blockbuster. He's building his newest limited edition Bionicle (thank goodness for directions from Aidan) while watching some movies. He also called mom while she was at Vons today to ask for "a whole entire rotisserie chicken". When he was told they were out of them, his next request was pumpkin pie. The third phone call from Vons was to tell him they didn't have that either, he said "fine I'll settle for Oreo's & milk then." Let's hope this appetite continues as we pump up for the next round of chemo.
Tuesday, February 12, 2008
Ramblings of a somewhat crazed and silly mother
Hello Family and Friends,
Thank You Bridgett for updating the blog for me last week. Just want you all to know that I have made Starbucks that much richer after last week's hospital visit. Not that anything bad or unusual happens but when you start knowing the nurse's rotation schedules and they know that you don't want to be disturbed before 7:30am(ha ha good luck)...why does Aidan have to be weighted at 4am anyway?And if I'm not there I am at Starbucks or Toys R' Aidan and that one of Aidan's incredible nearly personal staff likes iced mocha with whip and another likes nonfat vanilla latte extra hot... Sorry I digress-yes, nurse schedules and how their kids and grandkids are doing and why the lady that cleans our room was upset that her 15 year old dropped her second cell phone in the toilet-you know you've been in the hospital toooooo long!!!!!! You get the picture...
Enough about my dying brain cells-AIDAN is doing very well!!! He had a very hard chemo session as Bridgett mentioned. He started Monday and by Tuesday night spiked a fever-this was anticipated due to his HD Ara-C (high dose Ara-C) This lasted 2 days which seems to be the longest he holds a fever and then Thursday started getting a bright red rash on his abdomen. Thank goodness, this one was not itchy but it is still on his head a bit. His personal trauma is still the weekly changing of his bandage that covers his Broviac but seems to be getting through this amazingly well. (It stings when they take off the bandage because the skin underneath is not regenerating so it stays a little raw). After his last dose Saturday morning, Dr. M asked if we would like to go home and awwhhh yeah Dr. Darren we're out of here. Home felt so good-everyone knows now about my three day dehospitalization process. First-sleep in a soft bed, second sleep some more-maybe by day 2 get dressed but day three up and running. Guess what today is!!
I have had a few people ask me what clinic is (hi Jana) -it is Dr. Ruki's Oncology office that is basically equipped for any outpatient services her patients need. They do blood draws so we don't have to go to the germ filled lab, they give blood and platelets so we don't have to check in to the hospital, many kids with A.L.L. (acute lymphomic leukemia) get 2 years of treatment so a lot of their chemo is outpatient. Aidan has a routine-blood pressure, weight, blood draw, Dr.'s physical exam including a thorough external skin exam, wait for blood results and home. We wait for blood results there because there have been a few times as you already know that he's needed blood so I won't drive the hour home for them to call me and say come back for blood or platelets. It makes for a very long morning but Aidan brings a backpack full of entertainment-like a road trip only better!
Anyway, home feels good and he feels good so I am good. The Lord has given us this for a reason and we are going to do our best to make it through without complaints or self pity. I know that when you are in the midst of a crisis it is hard to see the light at the end of the tunnel but I know that Aidan is very well protected right now and that he will see this through and hopefully someday help others get through the same thing. When you sign up for motherhood you never know what you're gonna get-its like the old grab bags the ice cream man used to sell-and I am fully accepting of what's in this grab bag and will carry Aidan through the best I can. Of course I have an incredible man by my side, Tito who would move heaven and earth for Aidan and me, as well as Lucho who not only has to shoulder the illness but has a new baby due in a few weeks. I cannot imagine his emotional tug of war-happy for baby, worried about Aidan-very hard and we pray for him a lot.
Ok enough,
Thank you to everyone who sent cards these last few weeks and a big thank you to come for the special gifts Aidan received over the past few days.
love,
Aimee
PS I'll post some pics this week
Thank You Bridgett for updating the blog for me last week. Just want you all to know that I have made Starbucks that much richer after last week's hospital visit. Not that anything bad or unusual happens but when you start knowing the nurse's rotation schedules and they know that you don't want to be disturbed before 7:30am(ha ha good luck)...why does Aidan have to be weighted at 4am anyway?And if I'm not there I am at Starbucks or Toys R' Aidan and that one of Aidan's incredible nearly personal staff likes iced mocha with whip and another likes nonfat vanilla latte extra hot... Sorry I digress-yes, nurse schedules and how their kids and grandkids are doing and why the lady that cleans our room was upset that her 15 year old dropped her second cell phone in the toilet-you know you've been in the hospital toooooo long!!!!!! You get the picture...
Enough about my dying brain cells-AIDAN is doing very well!!! He had a very hard chemo session as Bridgett mentioned. He started Monday and by Tuesday night spiked a fever-this was anticipated due to his HD Ara-C (high dose Ara-C) This lasted 2 days which seems to be the longest he holds a fever and then Thursday started getting a bright red rash on his abdomen. Thank goodness, this one was not itchy but it is still on his head a bit. His personal trauma is still the weekly changing of his bandage that covers his Broviac but seems to be getting through this amazingly well. (It stings when they take off the bandage because the skin underneath is not regenerating so it stays a little raw). After his last dose Saturday morning, Dr. M asked if we would like to go home and awwhhh yeah Dr. Darren we're out of here. Home felt so good-everyone knows now about my three day dehospitalization process. First-sleep in a soft bed, second sleep some more-maybe by day 2 get dressed but day three up and running. Guess what today is!!
I have had a few people ask me what clinic is (hi Jana) -it is Dr. Ruki's Oncology office that is basically equipped for any outpatient services her patients need. They do blood draws so we don't have to go to the germ filled lab, they give blood and platelets so we don't have to check in to the hospital, many kids with A.L.L. (acute lymphomic leukemia) get 2 years of treatment so a lot of their chemo is outpatient. Aidan has a routine-blood pressure, weight, blood draw, Dr.'s physical exam including a thorough external skin exam, wait for blood results and home. We wait for blood results there because there have been a few times as you already know that he's needed blood so I won't drive the hour home for them to call me and say come back for blood or platelets. It makes for a very long morning but Aidan brings a backpack full of entertainment-like a road trip only better!
Anyway, home feels good and he feels good so I am good. The Lord has given us this for a reason and we are going to do our best to make it through without complaints or self pity. I know that when you are in the midst of a crisis it is hard to see the light at the end of the tunnel but I know that Aidan is very well protected right now and that he will see this through and hopefully someday help others get through the same thing. When you sign up for motherhood you never know what you're gonna get-its like the old grab bags the ice cream man used to sell-and I am fully accepting of what's in this grab bag and will carry Aidan through the best I can. Of course I have an incredible man by my side, Tito who would move heaven and earth for Aidan and me, as well as Lucho who not only has to shoulder the illness but has a new baby due in a few weeks. I cannot imagine his emotional tug of war-happy for baby, worried about Aidan-very hard and we pray for him a lot.
Ok enough,
Thank you to everyone who sent cards these last few weeks and a big thank you to come for the special gifts Aidan received over the past few days.
love,
Aimee
PS I'll post some pics this week
Monday, February 4, 2008
Aidan's Surprise Check In
This is Bridgett writing since Aimee was caught totally off guard today. This morning Aimee thought they were just going to the clinic to have Aidan's blood checked. To their surprise, Aidan's counts were high enough to start the next round of chemo. With no preparation, this of course was the cause for a very long & hard day. Thank goodness Tito was right there to the rescue & then Lucho came for the 2nd round of rescue. Aidan will be sad to see his daddy go back to South Carolina on Tues morning. He had a great time playing games with dad for the weekend.
This round of chemo is an intensified five day treatment which is supposed to cause a lot of side effects. Aidan got a visit from Brother Boughton, Brother Raica & Corey to have a priesthood blessing. As usual, they gave him a beautiful blessing of healing and strength. He also got a lesson per his request because he's "had to miss a lot of church & so he really needed a lesson". Aidan has always had such a faithful sweet spirit which is only getting stronger (Thanks to his Mom). Their true faith is such a great lesson to the rest of us. We all love & admire your strength Aidan!!
This round of chemo is an intensified five day treatment which is supposed to cause a lot of side effects. Aidan got a visit from Brother Boughton, Brother Raica & Corey to have a priesthood blessing. As usual, they gave him a beautiful blessing of healing and strength. He also got a lesson per his request because he's "had to miss a lot of church & so he really needed a lesson". Aidan has always had such a faithful sweet spirit which is only getting stronger (Thanks to his Mom). Their true faith is such a great lesson to the rest of us. We all love & admire your strength Aidan!!
Saturday, February 2, 2008
Thank you GEM BeBe
Thank you to everyone who has purchased Aidan's miracle candle. GEM BeBe has contributed close to $500.00 so far to Aidan. This money is going towards the weekly copays at the Dr.'s for clinic visits and medication as well as all the gas (and Mom's Starbucks habit). Audrey you have given us so much of your time and love and we appreciate you. Thank you so much from the bottom of our hearts.
YO YO YO
Well, its decided-the chemo has officially gone to his head-literally and figuratively. My son, who has hardly been 10 miles outside of Orange County-except to go to Las Vegas and SC-thinks he is a gangsta. He is sportin the Bling that Dad's friend Ira sent to him in the mail and he looks so cool-bald head in all, completes the look don't you think? Too funny. As you can probably guess we are finally home after 6 grueling days of our Kaiser timeshare. Only grueling because Aidan felt so lousy at first and then after a few days felt better but of course we still had to stay until his counts went up enough that it was safe for him to leave. We left late Thursday and got home just in time for Aidan to hole up in his bedroom for a few solid hours of play. He had a lot of catching up to do with all of his toys and video games. They missed each other!!!! I really haven't done much of anything for the past two days-I get so zombified with hospital hours, it takes me so much longer than Aidan to readjust. I have a new appreciation for my privacy though. We have the best nurses you can get but when they are in and out so much it makes you want to cry. Thursday morning thank goodness I remembered to bring my clean clothes in the bathroom with me because when I came out the Dr. was sitting on the bed playing video games with Aidan. Mind you it was 8am. This Dr. has decided that he is going to adopt Aidan so when Dr. Ruki found out she was highly insulted that she was not on the top of the Aidan adoption list!!! This of course leaves Aidan beaming from ear to ear!
Thursday morning Aidan after the 8am Dr. visit, Aidan had his 3rd Bone Marrow Aspiration. Sad to say but this is getting easier every time. He SWEARS he was awake thru the whole thing but I watched what the Dr. was doing to his back (not for the faint of heart) and there was NO WAY this kid was awake. This time an anestheiologist was in charge of the drugging and he gave hims something really good. Not sure of what he used but there were no side effects at all-he woke up a few minutes after the procedure and didnt have hardly any of the loopiness that he has with the Versed/ketamine combo. After that they put a bandaid on and he's good to go.
Monday is a clinic visit and then we'll talk about checking back in for chemo. For now we will enjoy being holed up at home away from the germy world for a while.
love you
Aimee
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