Happy Easter everyone! We are so grateful for all of the truly wonderful blessings in our lives. Aidan has a NEW BABY BROTHER from Dad and Betty. Christian Eduardo Freund was born March 19 and weighed 9 lbs 10 oz...poor Betty-she delivered natural with epidural-eye yeh yeh! Aidan was only 6 lbs and I thought the end of the world was coming. Aidan can't wait to meet his new little brother!
Aidan is feeling good one week after his chemo treatment-Praise God. He had 6 days (4 of Ara C and 4 of Mitoxantrone) they overlapped in the middle and he really came out like a champ with NO fever this time!!! YEAH. His counts dropped rapidly this week and we are going to have to go in sometime this weekend for blood and platelets but as an outpatient. His teacher Mr. Beyer who comes to our house to teach Aidan says his mind is sharp and he is doing good on his home studies. We ventured out to the movies and saw 10000 BC in the middle of the day so the theater was empty. Mom brought along the clorox wipes and wiped the arm rests down and we were good to go. Aidan ate a HUGE caramel apple, pretzel and pizza and the next day he was Neutrapenic so he got the restaurant food in just in time!
Some of the major changes we have made since Aidan's diagnosis: we hardly go anywhere, germs are everywhere. We have ventured outside on rare occasion but Aidan can't be in the sun too long and he fatigues quickly. We have limited our visitors to very few to none, we can't take any chances. We pray alot, well I do, I can't speak for anyone else. Actually, Aidan's prayers are very to the point and concise-Heavenly Father thank you for this day and please make me better, Amen-Very Lego engineerish if you ask me! I have decided to tackle the family photos. My parents have relinquished the treasure unto moi and I am motivated to get 38 years of photos under control. I know in a week I'll be saying, "what have I gotten myself into." I have already decided there will be NO scrapbooking involved. I am strictly doing albums-KISS method-keep it simple stupid.
Anyway, we love you all and hope you have a very Happy Easter weekend
Love Aimee
Friday, March 21, 2008
Tuesday, March 11, 2008
March Madness
Hi everyone, sorry its been so long between posts. Dr. Ruki says some denial can be healthy. A way to survive. So I guess I've had some of that! today is the 11th and Aidan was admitted yesterday after a full afternoon in the clinic. He will be here for the week as long as the treatment is kind to him. He is getting 4 days of HD-Ara c and 4 days of a new drug (for him) called Mitoxanthrone. This round is called Intensification II. For some reason this time the A tivan (anti-anxiety) is making him extra emotional so we are dealing with that, but the good-great news is that his Bone marrow aspiration Friday showed no sign of blasts (cancer cells) which is very good at this point in treatment. It reassures that chemo plan is doing what it's supposed to do. Dr says he looks good and his ANC was 2.0 which is great. This means that he is not Neutropenic right now and can cat regular food while in the hospital. He was Not happy about being admitted and didn't really think he needed to go because he really feels like he's " Done with the cancer." too cute. of course i have to have a good private cry after he talks like that.if only it were that simple. He doesn't understand why they can't just give him a shot and be done with it. I wish!
Dad is out here in Cali right now awaiting the birth of his second baby boy his expecting with his longtime girlfriend, Betty. Apparently, this baby is taking after his brother, Aidan because he is taking his own sweet time coming out. of course Lucho is also out here for Aidan so he is dividing his visit between waiting for contractions and waiting for chemo. poor guy-l'm not sure how he is keeping his head on straight.
So, we had a few good weeks home waiting for counts to go up and we are half way thru this. I will let you know how he takes the new medicine. He looked a little flushed when he stood up for bathing so we'll see what happens. I have lots of help this week for breaks so l am very grateful for this visit and friends. the Lord is watching over us and i know that He is protecting Aidan through this. There can Always be worse.
Blessings to all those who have sent cards and gifts in the mail. I apologize if I cannot thank each one of you personally but know that your gestures are greatly appreciated and i am truly humbled by the love and rapport of so many. Thank you. Aimee
Dad is out here in Cali right now awaiting the birth of his second baby boy his expecting with his longtime girlfriend, Betty. Apparently, this baby is taking after his brother, Aidan because he is taking his own sweet time coming out. of course Lucho is also out here for Aidan so he is dividing his visit between waiting for contractions and waiting for chemo. poor guy-l'm not sure how he is keeping his head on straight.
So, we had a few good weeks home waiting for counts to go up and we are half way thru this. I will let you know how he takes the new medicine. He looked a little flushed when he stood up for bathing so we'll see what happens. I have lots of help this week for breaks so l am very grateful for this visit and friends. the Lord is watching over us and i know that He is protecting Aidan through this. There can Always be worse.
Blessings to all those who have sent cards and gifts in the mail. I apologize if I cannot thank each one of you personally but know that your gestures are greatly appreciated and i am truly humbled by the love and rapport of so many. Thank you. Aimee
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
Subscribe to:
Posts (Atom)