Good Morning. Let's just say yesterday was not one of my best days. I actually became the sobbing, useless pile of mush on the floor that everyone imagines I should be. I felt completely overwhelmed by life and could not do anything about it but cry and then cry some more. I am pretty sure I scared the tarnation out of Steve! I don't know what caused this episode and as Kathy put it "I don't have to know"; but it may have something to do with the dizzy spells I had over the weekend, the 12 hour fast I had to do that morning causing low blood sugar, sleeping (rather NOT sleeping) with both kids in our bed the night before; or maybe, just maybe, the stress of all of this finally took hold of me and threw me on the floor. I absolutely deplore feeling helpless and overwhelmed. Besides being scary it is just not ME!! Until this weekend, I thought I had my s*@t together. But I was proven otherwise. On Monday, I completely flubbed a dinner party causing several guests to feel completely uncomfortable. If you know me then you know that is not how my dinner parties usually go. Then yesterday morning, I was stopped at a red light and for absolutely no reason just decided to drive through while the light was still red!! I caught myself but not before everyone else at the intersection noticed the stupid woman that must be on SOMETHING!!! Then just to top it off, as I was filling out an online form yesterday, I typed in my area code from my home state! Not the one I have been living in since 2000!! What is up with that????!! So it is official, I have LOST IT!!!
Luckily, I got some rest last night and feel somewhat better today. I'm still very leery to take much on though. The dizzy spells are something I have experienced before in 1997 when I was diagnosed with hypoglycemia. That took a solid year of diligence before I could get that under control. So we'll see how today goes. Hopefully my senses will come back to me in the very near future.
Alex is doing pretty well. He has headaches quite often, but that is to be expected since he has two tumors dying in his head! He is considering shaving his head like Calliou (kid show) because he has two large bald spots on the both sides of the back of his head and the rest of the hair is very thin. He said he would do it if it did not hurt. So maybe this weekend. His cheeks are still very swollen as well as his belly. Is it just shallow of me to say that I don't like this version of my beautiful boy? While his smile still lights up any room and my love for him still grows everyday, I hate seeing what this fight has done to his body. I know it is only temporary, but it makes the 400 pound gorilla harder to ignore!! Is that just bad or what?
Zoe Grace starts school on MONDAY!!!! HALLELUJAH!!!! JOY TO THE WORLD!!! This is going to be soooooo great for her (and the rest of us too). I can't wait to see her thriving in a Montessori environment. She is just craving activity and attention. It is very hard to balance the high vs. low energy levels of the kids. So this will definitely help. It will also be great to see all of our old friends at the school!! See you Monday!!!
Finally, I want Paul and Diane to know that we got their package yesterday. Alex is so excited to head out to Target today!! We plan to listen to the CD on the way! Thank you SO much! He and Zoe will just love being able to get all of those things I have to say NO to. You are so kind! Kisses and big Paul-size hugs!!!
Okay, I promised Alex I would only sit at the computer for the next 30 minutes and I have to get something accomplished!
Hope your day is a good one!
God bless!
G
Thursday, May 31, 2007
Thursday, May 24, 2007
SAVE THE DATES!!! FUNDRAISING EVENTS INFO!
So guess who has an ear infection? Zoe Grace, that's who! In addition to a prescription, I also got a big, purple, "Horrible Mother" stamp on my forehead!! Poor child, she only gave me one or two or a thousand clues!! I don't know when this stamp will wash off, I may have to wear it all weekend if I don't bathe.
I also wanted to put out a "save the date" notice to everyone. Two incredible women are planning two separate fundraising events for Alexander. The first one will be at the Lakewood Country Club on the evening of July 27th. The second will be a family oriented pancake breakfast at Jackson Park in Lakewood on August 4th from 9a to noon. Each event will have silent auction associated with it. If anyone has items and/or services for the August 4th event's silent auction, please let me know. I can't believe how generous the world is. The human spirit is incredible in its breadth and depth to love and ignite love. We feel very blessed to have these women in our lives as well as each of you readers. Your thoughts and positive energy are felt across the miles. Thank you all for EVERYTHING!!
So today has been okay. Zoe had a hard night and I am exhausted but hoping she will be asleep soon. Roxie is getting fixed right now and will be home in a few hours. So far we don't really have any plans for the weekend, but I bet Shrek 3 is going to be in it.
Hope your holiday is wonderful!
God bless!
G
I also wanted to put out a "save the date" notice to everyone. Two incredible women are planning two separate fundraising events for Alexander. The first one will be at the Lakewood Country Club on the evening of July 27th. The second will be a family oriented pancake breakfast at Jackson Park in Lakewood on August 4th from 9a to noon. Each event will have silent auction associated with it. If anyone has items and/or services for the August 4th event's silent auction, please let me know. I can't believe how generous the world is. The human spirit is incredible in its breadth and depth to love and ignite love. We feel very blessed to have these women in our lives as well as each of you readers. Your thoughts and positive energy are felt across the miles. Thank you all for EVERYTHING!!
So today has been okay. Zoe had a hard night and I am exhausted but hoping she will be asleep soon. Roxie is getting fixed right now and will be home in a few hours. So far we don't really have any plans for the weekend, but I bet Shrek 3 is going to be in it.
Hope your holiday is wonderful!
God bless!
G
Wednesday, May 23, 2007
Wednesday, May 23rd
Good Morning,
Today feels like a better day. Today is my nephew's birthday. He was born just months before our wedding and luckily I was able to fly home to be with Stephanie for his birth. I wil never forget that day. The delivery was long and very hard on Stephanie. Evan was in danger towards the end of the delivery and my mom and I were pushed aside so a team of nurses could come and assist the doctor and get the baby out! Everyone was so scared, I was shaking for at least an hour afterwards. Evan has grown into a wonderful child. He is so bright, loving, and has loads of energy. He also has an incredible artistic side. I adore being with them and so do Alex and Zoe Grace. Happy Birthday beautiful boy! We love you!
On another note (such is life, I guess), my stepfather's brother is in a coma and not doing well. He was treated for pneumonia then lost consciousness and stopped breathing for 20 minutes. This is completely unexpected and my heart goes out to Randy and the family. Life is so fleeting. This event brought me back to the realization that we REALLY do only have this very moment. I hope that helps me get through these next few days/weeks.
Anyway, I wanted to share with you a passage I read when I opened my book "Eat, Pray, Love" by Elizabeth Gilbert last night. So here goes:
Page 260: "I keep remembering one of my Guru's teachings about happiness. She says that people universally tend to think that happiness is a stroke of luck, something that will maybe descend upon you like fine weather if you're fortunate enough. But that's not how happiness works. Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings. And once you have achieved a state of happiness, you must never become lax about maintaining that happiness forever, to stay afloat on top of it. If you don't, you will leak away your innate contentment. It's easy enough to pray when you're in distress but continuing to pray even when your crisis has passed is like a sealing process, helping your soul hold tight to its good attainments."
You can see how pertinent that was to me last night after yesterday's blog, right? Well, thanks to a dear friend and beautiful soul that came on a moment's notice to just be with me, I was able to keep from sinking yesterday. She was my buoy as well as my support yesterday. Today, I have on my "to do" list, to contact the director of the family support group at TCH. Hopefully we will be able to connect with other parents/families in similar situations.
Okay, well I don't know if I am ready to participate relentlessly in the manifestations of my own blessings quite yet, but I bet I will be soon. Thank you all for your words of support to get me through the days.
BTW, Alex is doing quite well. He is at his highest weight ever and has got the buddha belly to show for it! It is quite cute and temporary since he will lose his appetite as he gets off the steroids starting next week. Yesterday, he queried "Mom, will I lose my appetite once I am off my meds?" I told him yes, but it will come back. Not to worry now, since that will be days, even weeks away. He replied, "yah, that is not for many days, so I don't have to think about it now." Ahhhh. Children. Aren't they great?
Zoe Grace must have known that I needed a distraction yesterday because she woke up in a MOOD!! She had three or four time outs yesterday for everything to throwing to putting her feet in the dog's water bowl. She would NOT take a nap yesterday even though she was obviously tired and fell asleep in the car twice! I don't know if she was just being two, or somehow, someway keeping me out of my frightened funk (as I lovingly refer to it). But any way, it worked. I was so grateful for the good times, the sweet days, that I longed for them by bedtime last night. Any parent knows what I am talking about! Sometimes it is ONLY our memories of how sweet and adorable our children are/can be that get us through the days!
Okay, I got a list of stuff to do. Have a wonderful day.
God bless,
G
Today feels like a better day. Today is my nephew's birthday. He was born just months before our wedding and luckily I was able to fly home to be with Stephanie for his birth. I wil never forget that day. The delivery was long and very hard on Stephanie. Evan was in danger towards the end of the delivery and my mom and I were pushed aside so a team of nurses could come and assist the doctor and get the baby out! Everyone was so scared, I was shaking for at least an hour afterwards. Evan has grown into a wonderful child. He is so bright, loving, and has loads of energy. He also has an incredible artistic side. I adore being with them and so do Alex and Zoe Grace. Happy Birthday beautiful boy! We love you!
On another note (such is life, I guess), my stepfather's brother is in a coma and not doing well. He was treated for pneumonia then lost consciousness and stopped breathing for 20 minutes. This is completely unexpected and my heart goes out to Randy and the family. Life is so fleeting. This event brought me back to the realization that we REALLY do only have this very moment. I hope that helps me get through these next few days/weeks.
Anyway, I wanted to share with you a passage I read when I opened my book "Eat, Pray, Love" by Elizabeth Gilbert last night. So here goes:
Page 260: "I keep remembering one of my Guru's teachings about happiness. She says that people universally tend to think that happiness is a stroke of luck, something that will maybe descend upon you like fine weather if you're fortunate enough. But that's not how happiness works. Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings. And once you have achieved a state of happiness, you must never become lax about maintaining that happiness forever, to stay afloat on top of it. If you don't, you will leak away your innate contentment. It's easy enough to pray when you're in distress but continuing to pray even when your crisis has passed is like a sealing process, helping your soul hold tight to its good attainments."
You can see how pertinent that was to me last night after yesterday's blog, right? Well, thanks to a dear friend and beautiful soul that came on a moment's notice to just be with me, I was able to keep from sinking yesterday. She was my buoy as well as my support yesterday. Today, I have on my "to do" list, to contact the director of the family support group at TCH. Hopefully we will be able to connect with other parents/families in similar situations.
Okay, well I don't know if I am ready to participate relentlessly in the manifestations of my own blessings quite yet, but I bet I will be soon. Thank you all for your words of support to get me through the days.
BTW, Alex is doing quite well. He is at his highest weight ever and has got the buddha belly to show for it! It is quite cute and temporary since he will lose his appetite as he gets off the steroids starting next week. Yesterday, he queried "Mom, will I lose my appetite once I am off my meds?" I told him yes, but it will come back. Not to worry now, since that will be days, even weeks away. He replied, "yah, that is not for many days, so I don't have to think about it now." Ahhhh. Children. Aren't they great?
Zoe Grace must have known that I needed a distraction yesterday because she woke up in a MOOD!! She had three or four time outs yesterday for everything to throwing to putting her feet in the dog's water bowl. She would NOT take a nap yesterday even though she was obviously tired and fell asleep in the car twice! I don't know if she was just being two, or somehow, someway keeping me out of my frightened funk (as I lovingly refer to it). But any way, it worked. I was so grateful for the good times, the sweet days, that I longed for them by bedtime last night. Any parent knows what I am talking about! Sometimes it is ONLY our memories of how sweet and adorable our children are/can be that get us through the days!
Okay, I got a list of stuff to do. Have a wonderful day.
God bless,
G
Tuesday, May 22, 2007
Tuesday, May 22nd
I'm devastated. I feel like my bones are made of lead. The kids went to bed early last night and I just laid on the couch crying. Steve had a friend to help out with some construction of sets so he was gone. There is nothing to buy, swallow, eat, drink, do that will make this go away. I don't want to be cheered up either. I just want to be understood and to know WHY!!??? WHY, WHY ALEX, WHY ZOE, WHY ME, WHY STEVE? FRIGGIN WHY?????
The fact that Steve understood the situation and said to me "I'm sorry, I thought you knew?" has not helped anything. Seems he and I had a huge disconnect on this situation. I have no idea how that happened. I think he made assumptions I did not make.
Today is a new day. A new "new normal" to begin. How do I fill these days? What can we do? Alex won't feel like doing much but Zoe will want to do everything. Thank God she starts back to school in June. That is such a godsend. I have so much stuff/paperwork to get done but absolutely no energy to do any of it.
Roxie was supposed to be fixed today but since I did not pick up her food last night, I will have to reschedule that appointment. I feel so stupid. I just don't know what to do except cry. I hope this day gets better soon.
G
The fact that Steve understood the situation and said to me "I'm sorry, I thought you knew?" has not helped anything. Seems he and I had a huge disconnect on this situation. I have no idea how that happened. I think he made assumptions I did not make.
Today is a new day. A new "new normal" to begin. How do I fill these days? What can we do? Alex won't feel like doing much but Zoe will want to do everything. Thank God she starts back to school in June. That is such a godsend. I have so much stuff/paperwork to get done but absolutely no energy to do any of it.
Roxie was supposed to be fixed today but since I did not pick up her food last night, I will have to reschedule that appointment. I feel so stupid. I just don't know what to do except cry. I hope this day gets better soon.
G
Monday, May 21, 2007
Post Radiation MRI Results-Mon, May 21st
Well there is good news and bad news. Good news is that radiation seems to have shrunk the new, high-grade tumor. The low grade tumor does not show response yet and won't for several months, being low grade and all. The bad news is that since the second tumor has now grown quickly and responded quickly, it is most likely a terminal high grade astrocytoma. There is stil hope though. There are survivors of high grade astrocytomas with atypical tumors and so far Alex's second tumor is quite atypical.
Right now all we can do is wait and see. Normally a high grade astrocytoma will reappear and become untreatable within 2 to 3 years. So, as Steve puts it, if Alex can make it for three years he's cured! Then we only have to worry about the low-grade tumor reappearing over the next 20 years.
Somehow there has to be good news in there somewhere. Basically, we'll be dealing with this stuff for the rest of Alex's life. The next step is to have another MRI in 12 weeks, so late August, right before school starts. In the meantime, Alex has to get off the steroids and recover from radiation. It is highly likely that within six weeks he will be sleeping 14 or more hours a day. Then we will have a period, no telling how long, when Alex will start to feel better (hopefully). We hope to take a quiet, family vacation somewhere at that time. We'll just have to see.
Okay, that's it. Alex is sleeping and we are trying to get Zoe down. Rest is needed, this is exhausting.
God bless.
G
Right now all we can do is wait and see. Normally a high grade astrocytoma will reappear and become untreatable within 2 to 3 years. So, as Steve puts it, if Alex can make it for three years he's cured! Then we only have to worry about the low-grade tumor reappearing over the next 20 years.
Somehow there has to be good news in there somewhere. Basically, we'll be dealing with this stuff for the rest of Alex's life. The next step is to have another MRI in 12 weeks, so late August, right before school starts. In the meantime, Alex has to get off the steroids and recover from radiation. It is highly likely that within six weeks he will be sleeping 14 or more hours a day. Then we will have a period, no telling how long, when Alex will start to feel better (hopefully). We hope to take a quiet, family vacation somewhere at that time. We'll just have to see.
Okay, that's it. Alex is sleeping and we are trying to get Zoe down. Rest is needed, this is exhausting.
God bless.
G
Monday, May 21st
Good Morning,
Well, Alex is having his final radiation treatment right now. I feel relief and fear at this moment. I have worn my most cheerful outfit today, just so I could look springy and have happy colors on me. Last night we made two batches of my special milk chocolate chip, walnut cookies for all of the staff that have helped us. As I walk in today, I realize there are alot more folks who have been there for us on this journey than I made cookies for. I sure hope I don't make anyone upset because we don't have enough cookies. Hopefully, the others will share.
Anyway, after this we head to Children's for his final vincristine infusion, blood draws, doctor visit. Then Alex has been invited to participate in the "Flashes of Hope" program. These folks come to the clinic monthly and take pics of the kids that then are provided to the family with all of the rights to the pics too. I was hoping to have Zoe with us today, but since she has pinkeye, I could not bring her to the clinic. So after pics, Alex will head down to radiology at 11a and the MRI starts at noon. It should take 45-60 minutes, so I expect to know something around 2pm today.
I'm doing my best to stay positive but actually a numbness has fallen over me. This is a life changing day (as Dr. Phil would say).
Well, dumbness comes with numbness which means I can't think of anything else to write. I'll be going now. Thank you all for your prayers and positive thoughts. We do love the comments so.
God bless and have a wonderful day!
G
Well, Alex is having his final radiation treatment right now. I feel relief and fear at this moment. I have worn my most cheerful outfit today, just so I could look springy and have happy colors on me. Last night we made two batches of my special milk chocolate chip, walnut cookies for all of the staff that have helped us. As I walk in today, I realize there are alot more folks who have been there for us on this journey than I made cookies for. I sure hope I don't make anyone upset because we don't have enough cookies. Hopefully, the others will share.
Anyway, after this we head to Children's for his final vincristine infusion, blood draws, doctor visit. Then Alex has been invited to participate in the "Flashes of Hope" program. These folks come to the clinic monthly and take pics of the kids that then are provided to the family with all of the rights to the pics too. I was hoping to have Zoe with us today, but since she has pinkeye, I could not bring her to the clinic. So after pics, Alex will head down to radiology at 11a and the MRI starts at noon. It should take 45-60 minutes, so I expect to know something around 2pm today.
I'm doing my best to stay positive but actually a numbness has fallen over me. This is a life changing day (as Dr. Phil would say).
Well, dumbness comes with numbness which means I can't think of anything else to write. I'll be going now. Thank you all for your prayers and positive thoughts. We do love the comments so.
God bless and have a wonderful day!
G
Sunday, May 20, 2007
Sunday, May 20th
Good Morning,
Well we were supposed to be at the Kyle O'Connell fundraiser this morning but Alex woke up with a fierce cough and Zoe appears to have pink eye. AUGHH!! Saturday, I took the kids to see Spiderman and it was a nice visit. Spidey remembered Alex from the Orlando trip and Alex had two more pictures for him. The host, Amazing Jakes' sales manager gave Alex a large blow up Spidey and a hackey sack spidey ball. The visit was short but very sweet.
Afterwards, we had lunch at Mac Grill then Steve headed home with the kids. I went shopping at Tuesday Mornings for some outdoor pottery. Then I went to Lowe's for some flowers to put in the pots then stopped in at Costco Liquor, since I was so close and we were so low on wine, etc. Anyway, as I was driving home, I noticed that I did not feel "good" but rather kinda "sad". I wondered to myself why this was the case since I just purchased beautiful flowers and had new pots to plant (one of my favorite things!). Then I realized the big, hairy gorilla in the passenger seat was tomorrow's MRI. This realization whipped me out of my shopping coma and back to reality. (It was a nice break while it lasted) Tomorrow will either be a day of elation or despair. No one knows right now and I have to say that this SUCKS!! BIG ONES TOO!!!
Well, I still have those pots to plant. Alex is busy coloring and Zoe is looking pitiful in the playroom. Steve is walking Roxie right now. I guess the plan for the day is just to keep busy and our minds occupied. Once again, it's one day at a time!
God bless,
G
Well we were supposed to be at the Kyle O'Connell fundraiser this morning but Alex woke up with a fierce cough and Zoe appears to have pink eye. AUGHH!! Saturday, I took the kids to see Spiderman and it was a nice visit. Spidey remembered Alex from the Orlando trip and Alex had two more pictures for him. The host, Amazing Jakes' sales manager gave Alex a large blow up Spidey and a hackey sack spidey ball. The visit was short but very sweet.
Afterwards, we had lunch at Mac Grill then Steve headed home with the kids. I went shopping at Tuesday Mornings for some outdoor pottery. Then I went to Lowe's for some flowers to put in the pots then stopped in at Costco Liquor, since I was so close and we were so low on wine, etc. Anyway, as I was driving home, I noticed that I did not feel "good" but rather kinda "sad". I wondered to myself why this was the case since I just purchased beautiful flowers and had new pots to plant (one of my favorite things!). Then I realized the big, hairy gorilla in the passenger seat was tomorrow's MRI. This realization whipped me out of my shopping coma and back to reality. (It was a nice break while it lasted) Tomorrow will either be a day of elation or despair. No one knows right now and I have to say that this SUCKS!! BIG ONES TOO!!!
Well, I still have those pots to plant. Alex is busy coloring and Zoe is looking pitiful in the playroom. Steve is walking Roxie right now. I guess the plan for the day is just to keep busy and our minds occupied. Once again, it's one day at a time!
God bless,
G
Friday, May 18, 2007
Friday, May 18th
So Alex was feeling better until the wee morning hours when his cough came back with a vengeance. While waiting to go to treatment he looked as sick as he did yesterday morning. I said to him, "you know, I bet today will be a lot like yesterday, and you'll start feeling better soon." Alex replied in a very soft voice, "I hope." Well that broke my heart. I wanted to cry right then and actually have felt like crying all morning.
I just called the clinic to see when his MRI was scheduled for next week. They still don't have it through the insurance stage yet. Hopefully, we'll hear something today. I was disheartened to hear that cough back this morning. I want Alex well NOW!! Hasn't he been through enough?
Okay, I'll stop now. Hopefully, my yoga will help me this morning gain some stress relief and perspective.
God bless,
G
I just called the clinic to see when his MRI was scheduled for next week. They still don't have it through the insurance stage yet. Hopefully, we'll hear something today. I was disheartened to hear that cough back this morning. I want Alex well NOW!! Hasn't he been through enough?
Okay, I'll stop now. Hopefully, my yoga will help me this morning gain some stress relief and perspective.
God bless,
G
Thursday, May 17, 2007
Thursday, May 17th
Good Morning. Well, this morning Alex told Steve, "I want to go see Dr. Foreman, because I think I'm sick." He had started coughing early this morning and you could just see it in his eyes that he did not feel well. At treatment they told Steve they heard some tightness in his chest. So right now they are at the clinic waiting to do a blood draw. I want to be there, and today is my day to take Alex to treatment, but he wanted his Daddy. So his Daddy he got! Please say a little prayer for Alex's wellness and wholeness.
I'm adding this paragraph after publishing of the post. Alex and Steve just got home. Alex's blood draw showed "toxicity" meaning he can't tolerate anymore chemo treatments, so he'll miss his last one tomorrow. His steroids have been increased over the weekend, to get him by. Also, his potassium is low and most likely will need a supplement. Finally, Alex will have an MRI next week (four weeks prior to the regularly scheduled MRI) because the doctor wants to verify that his symptoms are due to necrosis and not tumor growth. Well, neither Steve nor I was expecting this. Now I think I'm scared to death!!
I also wanted to document a conversation that happened Tuesday night around the dinner table. So here goes, Zoe was not eating her dinner so Alex said very loudly and firmly "Zoe eat your food!" Then Steve said "Alex, who am I? I'm the Dad, let me tell Zoe to eat her food." Alex, without a moment's hesitation, replied, "Well, I'm the big brother and I named her so I get to tell her what to do!" Then turned his head and tried very hard not to smile but failed miserably!!
Well, Steve tried to contain his laughter in his napkin, but I did not even try and told him to give it up! Alex has never pulled the "I named her" card before and it just goes to show what a great thinker/debater he is and will always be!! Nadine says he is going to be a great attorney some day! Please God, anything but that!!! (My dad was an attorney, just in case you did not know.)
Also, I have to say that this is getting harder every day. Steve and I are starting to feel isolated in our experience. It is very hard to explain to anyone and trying is really futile. Just something you have to experience day in and day out, I guess. I think I'll try to connect to some other families at the fundraiser this weekend, but it all just depends. I am actually a very shy person and have come to rely on Steve to meet new folks.
So here is another experience I have to tell about. Alex has finished every "Color Wonder" book he owns, including Zoe's princesses one! So we headed to Super Target (my absolute favorite weekly-visited store) and had to go straight to the Crayon aisle (as I think of it). We found two more Color Wonder books and one blank Color Wonder pad. Then we bought more markers, and crayons (Alex only likes the sharp ones). Then we headed over to the boys' underwear, where we bought some TMNT (Teenage Mutant Ninja Turtle) boxers and Spiderman 3 briefs. Alex has outgrown all of his underwear by two sizes! Then we saw a glow in the dark Spiderman shirt that Alex had to have to meet Spiderman in this weekend. Then I felt bad about not getting Zoe anything, so she got a new dress as well. Well, at the end of it all, I spent too much money. Alex asked at the dinner table "Mom, how many dollars did we spend today?" (He asked because he wanted the Color Wonder packs that come with a book and markers, but could not have because they cost $8 each) As Steve and I exchanged knowing glances, I replied "too much". Well, he would not let that be the end of it and wanted to know "how many?" So I told him. He said "that's alot, maybe next time we won't get anymore Color Wonder books." Later Steve said "Gwen, you can't spend that kind of money at Target." I said, "I know. (long pause) I just don't know how much longer I'm going to have to make him happy." I could not believe I spoke these words. I hate that I did, especially since I got no relief by speaking them. But Steve understood and we shared a long embrace.
Okay, well that is it for the day. Hopefully, Alex will be meeting Spiderman at Amazing Jakes this Saturday and we will all attend the walk/run on Sunday. Hope your weekend is a good one!
God bless,
G
I'm adding this paragraph after publishing of the post. Alex and Steve just got home. Alex's blood draw showed "toxicity" meaning he can't tolerate anymore chemo treatments, so he'll miss his last one tomorrow. His steroids have been increased over the weekend, to get him by. Also, his potassium is low and most likely will need a supplement. Finally, Alex will have an MRI next week (four weeks prior to the regularly scheduled MRI) because the doctor wants to verify that his symptoms are due to necrosis and not tumor growth. Well, neither Steve nor I was expecting this. Now I think I'm scared to death!!
I also wanted to document a conversation that happened Tuesday night around the dinner table. So here goes, Zoe was not eating her dinner so Alex said very loudly and firmly "Zoe eat your food!" Then Steve said "Alex, who am I? I'm the Dad, let me tell Zoe to eat her food." Alex, without a moment's hesitation, replied, "Well, I'm the big brother and I named her so I get to tell her what to do!" Then turned his head and tried very hard not to smile but failed miserably!!
Well, Steve tried to contain his laughter in his napkin, but I did not even try and told him to give it up! Alex has never pulled the "I named her" card before and it just goes to show what a great thinker/debater he is and will always be!! Nadine says he is going to be a great attorney some day! Please God, anything but that!!! (My dad was an attorney, just in case you did not know.)
Also, I have to say that this is getting harder every day. Steve and I are starting to feel isolated in our experience. It is very hard to explain to anyone and trying is really futile. Just something you have to experience day in and day out, I guess. I think I'll try to connect to some other families at the fundraiser this weekend, but it all just depends. I am actually a very shy person and have come to rely on Steve to meet new folks.
So here is another experience I have to tell about. Alex has finished every "Color Wonder" book he owns, including Zoe's princesses one! So we headed to Super Target (my absolute favorite weekly-visited store) and had to go straight to the Crayon aisle (as I think of it). We found two more Color Wonder books and one blank Color Wonder pad. Then we bought more markers, and crayons (Alex only likes the sharp ones). Then we headed over to the boys' underwear, where we bought some TMNT (Teenage Mutant Ninja Turtle) boxers and Spiderman 3 briefs. Alex has outgrown all of his underwear by two sizes! Then we saw a glow in the dark Spiderman shirt that Alex had to have to meet Spiderman in this weekend. Then I felt bad about not getting Zoe anything, so she got a new dress as well. Well, at the end of it all, I spent too much money. Alex asked at the dinner table "Mom, how many dollars did we spend today?" (He asked because he wanted the Color Wonder packs that come with a book and markers, but could not have because they cost $8 each) As Steve and I exchanged knowing glances, I replied "too much". Well, he would not let that be the end of it and wanted to know "how many?" So I told him. He said "that's alot, maybe next time we won't get anymore Color Wonder books." Later Steve said "Gwen, you can't spend that kind of money at Target." I said, "I know. (long pause) I just don't know how much longer I'm going to have to make him happy." I could not believe I spoke these words. I hate that I did, especially since I got no relief by speaking them. But Steve understood and we shared a long embrace.
Okay, well that is it for the day. Hopefully, Alex will be meeting Spiderman at Amazing Jakes this Saturday and we will all attend the walk/run on Sunday. Hope your weekend is a good one!
God bless,
G
Tuesday, May 15, 2007
Tuesday, May 15th
Good Afternoon,
I just wanted to let you know that Alex is doing much better. His meds finally started helping Sunday and he had a very good day yesterday. Today he has PT and I am anxious to see what he can do. Wish us luck.
I just wanted to tell everyone/anyone that there is a fundraiser this Sunday. The Kyle O'Connell Foundation is hosting a very family oriented event in Littleton. This organization supports research of pediatric brain tumors and familes dealing with them. To register online go to www.kyleoc.org . We are planning on attending the event but probably won't arrive until 10am or so. I hope to see some familiar faces there!
More good news, only four treatments left!!! Tomorrow will be the beginning of radiation to a smaller field. We don't know if this will make a difference to Alex and his symptoms but it is still good news to me!
Thank you all for your well wishes and prayers. I love to read your comments and gain strength from your words of kindness.
God bless!
G
I just wanted to let you know that Alex is doing much better. His meds finally started helping Sunday and he had a very good day yesterday. Today he has PT and I am anxious to see what he can do. Wish us luck.
I just wanted to tell everyone/anyone that there is a fundraiser this Sunday. The Kyle O'Connell Foundation is hosting a very family oriented event in Littleton. This organization supports research of pediatric brain tumors and familes dealing with them. To register online go to www.kyleoc.org . We are planning on attending the event but probably won't arrive until 10am or so. I hope to see some familiar faces there!
More good news, only four treatments left!!! Tomorrow will be the beginning of radiation to a smaller field. We don't know if this will make a difference to Alex and his symptoms but it is still good news to me!
Thank you all for your well wishes and prayers. I love to read your comments and gain strength from your words of kindness.
God bless!
G
Monday, May 14, 2007
Monday, May something
Well, Saturday ended with shakers of Pomegranate martinis and a very tearful call to my sister. Steve and I had a very difficult time that day. Alex was completely miserable. He would not/could not eat, drink, sleep and breathing was not easy either. That is very difficult to see and not be able to help your child. Sunday was better. He ate some, drank some and sat at the dining room table and colored. While I was opening my Mother's Day cards he said, "You know what the best part about Mother's Day is? Spending time with you." I told him he just made my day!
Zoe and Alex got me a spa treatment package that I can not wait to use. Zoe wore a beautiful little sundress (that she wanted off immediately) and we spent a lot of time outside planting flower containers. She and I had done the flower shopping Saturday afternoon, just because I had to get out of the house or go crazy (and Steve insisted!!). All in all it was a good day.
While having a coloring party with his best friend, Alex said after coughing AGAIN, "Mom nothing is working on my cough! NOTHING, not the white pill, not the little pill, not the pink pill and not even the red medicine!! I"m sick of being sick and just want to go outside and run and play." This breaks my heart. Does he know how far away he is from being outside and running and playing? Does he know that we have no idea if his swallow issues will ever be resolved? Is there anything I can do to help my little, beautiful boy?
Well, I'm near tears and sitting in the radiation center waiting room. So I'm going to wrap this up. I'm reading a great book right now by Elizabeth Gilbert, "Eat, Pray Love". I highly recommend it. Last night I came across another sentence that I want to set in my memory and also share with you. On page 191, it states "God dwells within you, as you. AS you. . . God dwells within you as yourself, exactly the way you are. God isn't interested in watching you enact some performance of personality in order to comply with some crackpot notion you have about how a spiritual person looks or behaves."
That seems so difficult to wrap my head around, yet it is the lesson of Love I have been taught my entire life.
Okay, gotta go. God bless and have a wonderful day.
G
Zoe and Alex got me a spa treatment package that I can not wait to use. Zoe wore a beautiful little sundress (that she wanted off immediately) and we spent a lot of time outside planting flower containers. She and I had done the flower shopping Saturday afternoon, just because I had to get out of the house or go crazy (and Steve insisted!!). All in all it was a good day.
While having a coloring party with his best friend, Alex said after coughing AGAIN, "Mom nothing is working on my cough! NOTHING, not the white pill, not the little pill, not the pink pill and not even the red medicine!! I"m sick of being sick and just want to go outside and run and play." This breaks my heart. Does he know how far away he is from being outside and running and playing? Does he know that we have no idea if his swallow issues will ever be resolved? Is there anything I can do to help my little, beautiful boy?
Well, I'm near tears and sitting in the radiation center waiting room. So I'm going to wrap this up. I'm reading a great book right now by Elizabeth Gilbert, "Eat, Pray Love". I highly recommend it. Last night I came across another sentence that I want to set in my memory and also share with you. On page 191, it states "God dwells within you, as you. AS you. . . God dwells within you as yourself, exactly the way you are. God isn't interested in watching you enact some performance of personality in order to comply with some crackpot notion you have about how a spiritual person looks or behaves."
That seems so difficult to wrap my head around, yet it is the lesson of Love I have been taught my entire life.
Okay, gotta go. God bless and have a wonderful day.
G
Saturday, May 12, 2007
Saturday, May 12th
Hi everyone. Well Alex has not had the best of days since the last post. The sleep is still not restful and that causes a strain on everyone. Right now everyone else is sleeping and I plan to join them shortly. I just wanted to get a few thoughts down before they were replaced.
On Thursday, you may recall, that we did not have to have an chest X-ray because the docs said his lungs sounded clear. Well that night, at the dinner table, Alex said, "Mom, tomorrow I want to have an X-ray." I said, "Okay, why?" His reply was (are you ready?) "Because I want to make sure there is no sick in my body." Steve and I were completely astounded and told Alex how amazing he is. So Friday morning, after another horrible night of coughing and choking, Alex and Steve headed to the hospital. I met them there. The doctor and nurses concluded that since his lungs are clear that he is having difficulty with increased "secretions". They gave us a script for stuff to help dry up the secretions and upped his steroid dose a half milligram per day. What is happening is that these secretions are actually choking him because his swallow reflex has been compromised. AUGHHHHH!!!! Poor kid, he just feels crummy!!
So yesterday afternoon, while coloring, Alex says "Mom, I have something to tell you." I ask "what is it?" He says "My drool is back, but there is a problem." I ask what is the problem. He replies "I'm drooling in the MORNING and at night." (Can you believe this kid? Nothing gets by him and he is so bright and aware of everything.) I tell Alex that we know his drool is back (weird thing is that it is on the left side now as well, which is new) and that the new meds will help him and hopefully he will get a good nights rest and feel much better very soon. Once again, I am just completely in awe of my child(ren).
What this all means is that the radiaiton/chemo is working (causing swelling of the dying tissue) or that it is not working. We just won't know until the next MRI which is four weeks after his last treatment. It is so hard to remember this and not be scared by the return of symptoms. I am having to force myself to stay positive and just take it one day at a time. That is all we can do. That's it, nothing else, just that!!!! I feel like screaming right now. I guess that is the control freak in me coming out!
Okay, to get up to today, Alex did have a bit more rest last night but at 4 am, he started the choking and coughing again. I gave him some more meds but I'm not sure if they helped much. Zoe woke up at 4:30 am, and wanted to watch her shows. I put her in bed with us, then Roxie woke up and was very happy which was obvious since her large tail was making lots of racket!! (How do you spell racket, the non-tennis kind, anyway?) So when Steve came and woke me up at 9am, I found Alex and him on the couch watching shows. Alex looked horrible and seemed to feel worse. Steve asked that I take his temp and it was at 99.8 degrees. So we called the on call doc and she said to give him Tylenol. Right now my concern is that he is not eating or drinking. I can't even get water into him.
We had planned to meet friends at a local amusement park (small with lots of kiddee rides) this evening. They have kids that Alex adores but we had to cancel those plans. Right now all I want for Mother's Day is to see Alex smile, color, eat and drink. It's so basic but so precious.
God bless and Happy Mother's Day to all you moms!!
G
On Thursday, you may recall, that we did not have to have an chest X-ray because the docs said his lungs sounded clear. Well that night, at the dinner table, Alex said, "Mom, tomorrow I want to have an X-ray." I said, "Okay, why?" His reply was (are you ready?) "Because I want to make sure there is no sick in my body." Steve and I were completely astounded and told Alex how amazing he is. So Friday morning, after another horrible night of coughing and choking, Alex and Steve headed to the hospital. I met them there. The doctor and nurses concluded that since his lungs are clear that he is having difficulty with increased "secretions". They gave us a script for stuff to help dry up the secretions and upped his steroid dose a half milligram per day. What is happening is that these secretions are actually choking him because his swallow reflex has been compromised. AUGHHHHH!!!! Poor kid, he just feels crummy!!
So yesterday afternoon, while coloring, Alex says "Mom, I have something to tell you." I ask "what is it?" He says "My drool is back, but there is a problem." I ask what is the problem. He replies "I'm drooling in the MORNING and at night." (Can you believe this kid? Nothing gets by him and he is so bright and aware of everything.) I tell Alex that we know his drool is back (weird thing is that it is on the left side now as well, which is new) and that the new meds will help him and hopefully he will get a good nights rest and feel much better very soon. Once again, I am just completely in awe of my child(ren).
What this all means is that the radiaiton/chemo is working (causing swelling of the dying tissue) or that it is not working. We just won't know until the next MRI which is four weeks after his last treatment. It is so hard to remember this and not be scared by the return of symptoms. I am having to force myself to stay positive and just take it one day at a time. That is all we can do. That's it, nothing else, just that!!!! I feel like screaming right now. I guess that is the control freak in me coming out!
Okay, to get up to today, Alex did have a bit more rest last night but at 4 am, he started the choking and coughing again. I gave him some more meds but I'm not sure if they helped much. Zoe woke up at 4:30 am, and wanted to watch her shows. I put her in bed with us, then Roxie woke up and was very happy which was obvious since her large tail was making lots of racket!! (How do you spell racket, the non-tennis kind, anyway?) So when Steve came and woke me up at 9am, I found Alex and him on the couch watching shows. Alex looked horrible and seemed to feel worse. Steve asked that I take his temp and it was at 99.8 degrees. So we called the on call doc and she said to give him Tylenol. Right now my concern is that he is not eating or drinking. I can't even get water into him.
We had planned to meet friends at a local amusement park (small with lots of kiddee rides) this evening. They have kids that Alex adores but we had to cancel those plans. Right now all I want for Mother's Day is to see Alex smile, color, eat and drink. It's so basic but so precious.
God bless and Happy Mother's Day to all you moms!!
G
Thursday, May 10, 2007
Thursday, May 10th?
Hi everyone,
Well last night was not restful for anyone in the big bed. Alex developed a cough last night that caused him a lot of distress and discomfort. The doctor checked him out this morning at the treatment center and said it does not sound like pneumonia. WHOOO!! Still, Alex's mood is not that good.
As Steve says, "One day at a time".
God bless and have a good day.
G
Well last night was not restful for anyone in the big bed. Alex developed a cough last night that caused him a lot of distress and discomfort. The doctor checked him out this morning at the treatment center and said it does not sound like pneumonia. WHOOO!! Still, Alex's mood is not that good.
As Steve says, "One day at a time".
God bless and have a good day.
G
Tuesday, May 08, 2007
Tuesday, May 8th
Good Morning,
Alex is doing very well. He is walking well without his "super boot" and using his right hand much more. He has even started to eat on his right side of his mouth. At his clinic visit yesterday, the doc decided to keep him on his .5 mg of steroid for at least another week since some of his symptoms (drool, cough, occasional cough) were reappearing over the weekend. The doctor also explained to us that his decreased appetite is normal and will continue until Alex is off the steroids for 6 weeks. He said that getting off the steroids is very difficult and usually accompanied by a return of symptoms. Steve asked "why don't we just keep him on the steroids then?" Dr. F said the side effects are very bad and our goal is get him off asap.
Linda (Steve's mom) left Sunday. We enjoyed her visit very much. She truly spoils us all!! On Friday, Zoe and I flew to my hometown to surprise my mom who is graduating from college with her Business degree. The surprise went off without a hitch and the weekend was great. I am so very proud of her for completing this effort and the fortitude it took.
Zoe now has a cold and really had a hard time on the flight out. I have to say the flight attendants on our United flight could not have been more rude to us. I know I was "that mother" with the screaming, crying child but believe me when I say it is much harder on the child's parent than on anyone else on the plane!!
Well, I just wanted to do a quick post while Alex is getting his treatment. After today we have only nine treatments left!!!! HALLELUJAH!!!! HOORAY!!!! YIPPEEE!!! The end is in sight. Alex is very excited as are we all.
Well, enjoy your beautiful spring day. God bless.
G
Alex is doing very well. He is walking well without his "super boot" and using his right hand much more. He has even started to eat on his right side of his mouth. At his clinic visit yesterday, the doc decided to keep him on his .5 mg of steroid for at least another week since some of his symptoms (drool, cough, occasional cough) were reappearing over the weekend. The doctor also explained to us that his decreased appetite is normal and will continue until Alex is off the steroids for 6 weeks. He said that getting off the steroids is very difficult and usually accompanied by a return of symptoms. Steve asked "why don't we just keep him on the steroids then?" Dr. F said the side effects are very bad and our goal is get him off asap.
Linda (Steve's mom) left Sunday. We enjoyed her visit very much. She truly spoils us all!! On Friday, Zoe and I flew to my hometown to surprise my mom who is graduating from college with her Business degree. The surprise went off without a hitch and the weekend was great. I am so very proud of her for completing this effort and the fortitude it took.
Zoe now has a cold and really had a hard time on the flight out. I have to say the flight attendants on our United flight could not have been more rude to us. I know I was "that mother" with the screaming, crying child but believe me when I say it is much harder on the child's parent than on anyone else on the plane!!
Well, I just wanted to do a quick post while Alex is getting his treatment. After today we have only nine treatments left!!!! HALLELUJAH!!!! HOORAY!!!! YIPPEEE!!! The end is in sight. Alex is very excited as are we all.
Well, enjoy your beautiful spring day. God bless.
G
Thursday, May 03, 2007
Thursday, May 3rd
Good Morning! Zoe had a fantastic birthday. Thanks to None and the rest of us, she got a beautiful doll house decked out with all kinds of cool furniture and a family of six! She loves opening and closing the shutters on all the windows and tried desperately to remove the second roof panel. I guess she likes the tornado look! SHe also got some wonderful outfits from friends and family. Zoe has grown up but not out and is starting to look like a geek in her pants, so she is very happy to have new clothes! Thank you everyone!
Well, the blessings just keep coming. Diane, thank you for the letter. I was able to get to the top of page two before the tears started flowing then Zoe woke up and I estimate it will take me about a week to finish. So far it is very lovely and such a gift, thank you!
Also, our neighbor wrote a letter to Alex's school community that was very sweet. She is trying to collect funds for tuition. She told me a story about a mom that called her yesterday. This mother works as a waitress in her parents restaurant and promised to give all her earnings for the day to the Alex fund. Can you believe that? It is such a wonderful gift to us all to know that people are so kind and generous. Crissy did this as a surprise for us and I only found out because I went to register Alex for before/after school care next year and stopped in to see his teacher, Mr. Matt. Mr Matt told me about the letter. While I was reading it, I had to fight back the tears. This is such a kinder world than what we are led to believe on the television and in the print media. I wish that were not the case.
Well, Alex is doing fabulously!! I can't say it enough. He looks great, smiles alot!! And sleeps through the night. He enjoys coloring ALOT and except for Monday has very good days this week. MOndays are hard for him as they are for most of us!
I have to tell a tale about the other night. AFter we took Linda out for sushi (she was craving it) we came home and put the kids to bed. It was late! Anyway, about 20 minutes later, Alex is calling me. I go in and he asks, "Mom, what happens after treatments?" I was taken aback but answered that after four weeks they will take another picture of his big brain and then "I don't know what will happen". He paused, and asked if he would be asleep while they took the picture. I said "of course". Then I tucked him in, gave him a kiss and wished him a good night. He has not mentioned it again. Isn't that amazing? Alex is so very smart. I am trying to teach him to not worry, and ruin this day with something that is not happening until another day. It's a waste of a perfectly good day! We'll see!
Another adorable thing that happens at bedtime. Alex says to me "Mom, I'll come snuggle with you later". This is said in a very reassuring tone and always brings a smile to my face. He loves to sleep in our bed and he always grabs my arm and puts it over his body just so.
Okay, I better go. Alex should be done any minute.
God bless you all for your prayers and kind thoughts. They really do make a difference!
Make it a great day!
G
Well, the blessings just keep coming. Diane, thank you for the letter. I was able to get to the top of page two before the tears started flowing then Zoe woke up and I estimate it will take me about a week to finish. So far it is very lovely and such a gift, thank you!
Also, our neighbor wrote a letter to Alex's school community that was very sweet. She is trying to collect funds for tuition. She told me a story about a mom that called her yesterday. This mother works as a waitress in her parents restaurant and promised to give all her earnings for the day to the Alex fund. Can you believe that? It is such a wonderful gift to us all to know that people are so kind and generous. Crissy did this as a surprise for us and I only found out because I went to register Alex for before/after school care next year and stopped in to see his teacher, Mr. Matt. Mr Matt told me about the letter. While I was reading it, I had to fight back the tears. This is such a kinder world than what we are led to believe on the television and in the print media. I wish that were not the case.
Well, Alex is doing fabulously!! I can't say it enough. He looks great, smiles alot!! And sleeps through the night. He enjoys coloring ALOT and except for Monday has very good days this week. MOndays are hard for him as they are for most of us!
I have to tell a tale about the other night. AFter we took Linda out for sushi (she was craving it) we came home and put the kids to bed. It was late! Anyway, about 20 minutes later, Alex is calling me. I go in and he asks, "Mom, what happens after treatments?" I was taken aback but answered that after four weeks they will take another picture of his big brain and then "I don't know what will happen". He paused, and asked if he would be asleep while they took the picture. I said "of course". Then I tucked him in, gave him a kiss and wished him a good night. He has not mentioned it again. Isn't that amazing? Alex is so very smart. I am trying to teach him to not worry, and ruin this day with something that is not happening until another day. It's a waste of a perfectly good day! We'll see!
Another adorable thing that happens at bedtime. Alex says to me "Mom, I'll come snuggle with you later". This is said in a very reassuring tone and always brings a smile to my face. He loves to sleep in our bed and he always grabs my arm and puts it over his body just so.
Okay, I better go. Alex should be done any minute.
God bless you all for your prayers and kind thoughts. They really do make a difference!
Make it a great day!
G
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