As I try to do with these montly visits, here is the next morning update.
As tired as you think G would have been last night he did not fall asleep until almost 9 pm. There he was with his own version of "I'm not touching you!" in our bed next to Triston. All T wanted to do was sleep and G kept egging him on. Hard for me not to laugh out loud during it. I had to threaten G he would end up in his room by himself if he kept it up. I had such a nice day yesterday (still sounds ironic, huh? ) I bent the rules and let the boys fall asleep in our bed while daddy put his super hero computer-fixer cape on and helped out dear friends. We read a new book ( I spent $85 on a scholastic book order thru T's school and pulled out one of the goodies, saving the rest for xmas gifts), The Leaves Are Falling. It was perfect seeing as on our way home T observed all the trees that changed colors since Friday's drive home from school. We talked about how Autumn is our fav season (mine for so many reasons). I love the look on my kids faces when I yank out a new book!
We also took a peek at two new tv stations we discovered over the weekend. SMILE and LAKESHORE. Both have a nice mix of G and T aged shows, some with religious tones (simple cartoons intermixed with real-life stories with a similar lesson) and others focusing on character education. I am still researching some of the shows but overall pleased. Nice to have other options from Cartoon Network's fighting scenes and adult-undertones. Can you tell I am still struggling with this let him be a 6 yr old junk? I just feel like so many programs jump from age 4 to 7 n 8 yr olds. Not much in-between other than Phineas n Ferb , Fetch w Ruff Ruffman and Electric Company. Thank goodness T is so into non-fiction shows like National Geographic, Food Network, Animal Planet and anything science-related. He loves his gal, Giada. And G will watch anything T is into to!
This morning G's need to rush to the bathroom woke him at 6 am. I felt like it was 4 am I was so tired. I ran him to the bathroom and god bless his pee pee soul he went right back to sleep. That beautiful boy slept til 9 am! He woke in the best mood! He has been so lovey dovey!
Caden slept til 7 am and ate good breakfast. He had the whole liv room to himself for a few hours and he was loving all my attention. I loved it, too. Rarely do I get alone time with him (unless he's teething in the mid of the nite) and it is such a reminder of how precious he is. So inquisitive. Taking all he has observed in the past year and putting it into action. Adorable. We even snuck in some art drawings before G woke. As G got his morning going I then put C down for his morning nap. Now G has finished his breakfast, meds and is playing in the basement with his trains.
As for T, he was another one who woke in the best mood. I love how that kid handles his own morning routine. He toilets, brushes his teeth, dresses and prepares his own breakfast. By the time I get downstairs all I have left to do is pour his milk (or toast or waffle if he wanted something other than yogurt and fiber bar). I love how independent he has always been! My biggest boy!
As for meds this month-the usuals. We had no diarrhea mishaps yesterday (Vincristine side effect). Lucky! I will never forget August's diarrhea incident in the middle of Trader Joe's. No repeats of that please. I have not been back since!
He received his dose of Methotrexate intrathecally (via spinal injection) yesterday and will take weekly doses orally the remainder of the month. He started another round of steroids last night so we should see the ravenous side of him kick in this evening. He will continue those til Friday 2x a day.
But the real point of this post was not only to let you know how he's doing the past 24 hours but to share with you a reminder. I was blessed to read this post this morning.
http://www.team-ewan.com/2011/10/october-3-4.html
A reminder that not only was I having a great 24 hours just like G, but I am forever blessed to have my 3 boys to love on each morning. Look for the blessings in your day and hold onto them a little tighter. I know I do. I don't mind the reminders along the way. I hope you don't either. Happy Tuesday!
Our own lil superhero!
Dick Grayson ain't got nothin' on the G-man. Our lil fighter since in utero-a young, fiesty fireball...never giving up! Just watch me!
Tuesday, October 4, 2011
Monday, October 3, 2011
October clinic visit
Gonna make this one quick bc I am exhausted. Been a very happy but tiring day.
Counts:
Hgb: 8.2 dropped from last month but still in the ok range
Platelets: 491
WBC: 3.17
ANC: 2.34
Good counts!
We avoided the hypoglycemic issues by giving him a bit of breakfast this morning. 7 am was his cutoff per nurse request. Yeah, well the lazy butt did not get his bones out of bed til after 7 so by 7:30 I smashed half a juice box and about 10 goldfish down this throat. He woke in a good mood and that mood has remained all day long. I love that smile of his. He was happy to see all of his girls this morning!
He entertained us all, as usual. Areum brought him the mobile tv and he watched Curious George and Thomas. We talked about the Polar Express movie during his spinal procedure. He had Dr. Kwon asking questions and smirking the whole time. I know it sounds insane to place these type of words into such a place and procedure but really-I love clinic, he loves clinic and it remains our happy place all considering. G is so comfortable there and it is his time to soak in all the attention and take care of his business. He adores everyone there and vice versa. He continues to amaze me! I was so proud of him after his spinal. Even as Dr Kwon let him know he was all done with pokes G tried his best to look in his direction (which was difficult bc he has to lie on his side during the procedure and remain there for an additional 30 min afterward) and then said "Thank you, Dahter Kwon". Luv it!
Here he is saying CHEESE right after the procedure! See his "Buzz Lightyear" (SAT monitor) on his finger.
He ate fruit snacks during our 30 minute lie still time (see the things he gets spoiled with at clinic! we hardly ever touch those cavity ridden things at home!) and read books. Afterward he chose a Thomas magna doodle from the treasure chest as his poke prize. Areum lined up all the Thomas stuff for him to choose from. I remember last time G chose a game that was way beyond him but declared he wanted to play it with Triston. He has his big bro on his mind so often. Too sweet!
We rushed thru the Mcds drive thru for our routine chemo meal and headed home. I then headed over to Triston's school to be a Mystery Reader. T had no idea I was coming (that's the point!). I had to ask him last week which were his favorite books lately (never the same really, changes month by month bc we read so many). He chose Duck Soup and Fly High, Fly Guy. I lied and told him I needed ideas for my class so as not to give it away. Can I say that no matter how tired I was after chemo the look on my boy's face when I walked in his classroom was priceless. It truly was an expression I have never seen on him before. He was literally ecstatic, so much that he turned red, and not from embarrassment. Two great huge smiles from my two boys to make my entire day!! What a chemo day to remember!
We go back October 31st for Vincristine and counts.
Oh and as for the gunky cough----it was agreed that it is asthma related and his lungs sound perfectly clear. I will keep up on the nebs and asthma meds and continue to monitor.
Whew! What a day!
Counts:
Hgb: 8.2 dropped from last month but still in the ok range
Platelets: 491
WBC: 3.17
ANC: 2.34
Good counts!
We avoided the hypoglycemic issues by giving him a bit of breakfast this morning. 7 am was his cutoff per nurse request. Yeah, well the lazy butt did not get his bones out of bed til after 7 so by 7:30 I smashed half a juice box and about 10 goldfish down this throat. He woke in a good mood and that mood has remained all day long. I love that smile of his. He was happy to see all of his girls this morning!
He entertained us all, as usual. Areum brought him the mobile tv and he watched Curious George and Thomas. We talked about the Polar Express movie during his spinal procedure. He had Dr. Kwon asking questions and smirking the whole time. I know it sounds insane to place these type of words into such a place and procedure but really-I love clinic, he loves clinic and it remains our happy place all considering. G is so comfortable there and it is his time to soak in all the attention and take care of his business. He adores everyone there and vice versa. He continues to amaze me! I was so proud of him after his spinal. Even as Dr Kwon let him know he was all done with pokes G tried his best to look in his direction (which was difficult bc he has to lie on his side during the procedure and remain there for an additional 30 min afterward) and then said "Thank you, Dahter Kwon". Luv it!
He ate fruit snacks during our 30 minute lie still time (see the things he gets spoiled with at clinic! we hardly ever touch those cavity ridden things at home!) and read books. Afterward he chose a Thomas magna doodle from the treasure chest as his poke prize. Areum lined up all the Thomas stuff for him to choose from. I remember last time G chose a game that was way beyond him but declared he wanted to play it with Triston. He has his big bro on his mind so often. Too sweet!
We rushed thru the Mcds drive thru for our routine chemo meal and headed home. I then headed over to Triston's school to be a Mystery Reader. T had no idea I was coming (that's the point!). I had to ask him last week which were his favorite books lately (never the same really, changes month by month bc we read so many). He chose Duck Soup and Fly High, Fly Guy. I lied and told him I needed ideas for my class so as not to give it away. Can I say that no matter how tired I was after chemo the look on my boy's face when I walked in his classroom was priceless. It truly was an expression I have never seen on him before. He was literally ecstatic, so much that he turned red, and not from embarrassment. Two great huge smiles from my two boys to make my entire day!! What a chemo day to remember!
We go back October 31st for Vincristine and counts.
Oh and as for the gunky cough----it was agreed that it is asthma related and his lungs sound perfectly clear. I will keep up on the nebs and asthma meds and continue to monitor.
Whew! What a day!
Sunday, October 2, 2011
Surviving....
the way it should be.
On Tuesday, Sept. 27th Grayson and I had the privilege to attend a special ceremony.
We are featured in the last photo of 5.
http://www.dailyherald.com/article/20110928/news/709289941/#
http://www.dailyherald.com/article/20110928/news/709289941/#
There we were sitting with the president of Lutheran General Hospital and Hyundai , a legislative Representative, the wondrous Dr. Kwon, many other well-suited men and women and 3 other families at different stages of their cancer journey ( one of which was recently diagnosed in July which brought back many memories for me). It truly was one of those moments I had to pause time for. I did so several times during various speeches. Here we were at the VERY first stage of development for a survivorship clinic. A clinic G would be a part of. A clinic G would need. Surreal. And even a bit painful.The bittersweet feeling of our presence haunted me once again. It aches to be reminded we are family that needs this and yet we are thrilled to know such an opportunity will be at our fingertips.
Grayson was asked for an imprint of his hand on canvas. He was so excited to paint! He was also so well-behaved during the business portions of the event. His smile was pretty contagious! His handprint will be lifted from canvas and placed on a Hyundai Hope on Wheels vehicle ( a vehicle literally covered with hundreds of handprints of critically-ill children). Needless to say, there were many times I held back tears. This was real. To think that I will one day, years down the road, take him to see that canvas handprint of a tiny 2 yr old. To know that at any point in his life he can walk the halls of LGH and visualize what he was a part of puts my mommy heart at ease. I swear-the footsteps my mother, myself and Grayson have taken in that hospital have come full circle in more ways I can count. I am blessed.
All this was being done for the right reasons-for the patients. To continue to support them long after the treatment has ended. The list of long-term effects is hard to swallow ( you've read of my spiel on this before). The pain and fight does not end at the last dose of chemo. Several people have entered my life since G's diagnosis who affirm this. I call that list my dessert course. Right now we are stuffing ourselves with the main entrees. Dessert is OT (off treatment), expect it is not the kind of dessert you want. For me it is flan- I HATE flan. I will worry about my flan in 2+years.
But the big picture is this----surviving the fight and all that comes with it (before, during and after). And with a survivors clinic the plethora of resources are right there for us, for him, for so many other sufferers. Thank you Hyundai, thank you supporters and thank you LGH for inviting us to be a part of history. Grayson will undoubtedly know his story and those surrounding him during our journey.
I received news of this video about a week later...
http://www.youtube.com/watch?v=rbmfcmEtHmA
On Tuesday, Sept. 27th Grayson and I had the privilege to attend a special ceremony.
We are featured in the last photo of 5.
http://www.dailyherald.com/article/20110928/news/709289941/#
http://www.dailyherald.com/article/20110928/news/709289941/#
There we were sitting with the president of Lutheran General Hospital and Hyundai , a legislative Representative, the wondrous Dr. Kwon, many other well-suited men and women and 3 other families at different stages of their cancer journey ( one of which was recently diagnosed in July which brought back many memories for me). It truly was one of those moments I had to pause time for. I did so several times during various speeches. Here we were at the VERY first stage of development for a survivorship clinic. A clinic G would be a part of. A clinic G would need. Surreal. And even a bit painful.The bittersweet feeling of our presence haunted me once again. It aches to be reminded we are family that needs this and yet we are thrilled to know such an opportunity will be at our fingertips.
Dr Kwon during his acceptance speech
G and Dr Kwon
(at one point I caught Dr Kwon quickly smooch G on the cheek. I melted. G lit up. To see that side of Kwon was priceless. We never doubted it was there but as I have described before, Kwon is the serious straight to the point one of that Dr ying-yang. That moment and the time G gave Dell a great big bear hug-the kind you give your grampa- are etched in my mind forever. These two men are business when they need to be but deep down they love these kids. We are so lucky. G is so lucky.)
Princess Jennie
Grayson was asked for an imprint of his hand on canvas. He was so excited to paint! He was also so well-behaved during the business portions of the event. His smile was pretty contagious! His handprint will be lifted from canvas and placed on a Hyundai Hope on Wheels vehicle ( a vehicle literally covered with hundreds of handprints of critically-ill children). Needless to say, there were many times I held back tears. This was real. To think that I will one day, years down the road, take him to see that canvas handprint of a tiny 2 yr old. To know that at any point in his life he can walk the halls of LGH and visualize what he was a part of puts my mommy heart at ease. I swear-the footsteps my mother, myself and Grayson have taken in that hospital have come full circle in more ways I can count. I am blessed.
All this was being done for the right reasons-for the patients. To continue to support them long after the treatment has ended. The list of long-term effects is hard to swallow ( you've read of my spiel on this before). The pain and fight does not end at the last dose of chemo. Several people have entered my life since G's diagnosis who affirm this. I call that list my dessert course. Right now we are stuffing ourselves with the main entrees. Dessert is OT (off treatment), expect it is not the kind of dessert you want. For me it is flan- I HATE flan. I will worry about my flan in 2+years.
But the big picture is this----surviving the fight and all that comes with it (before, during and after). And with a survivors clinic the plethora of resources are right there for us, for him, for so many other sufferers. Thank you Hyundai, thank you supporters and thank you LGH for inviting us to be a part of history. Grayson will undoubtedly know his story and those surrounding him during our journey.
I received news of this video about a week later...
http://www.youtube.com/watch?v=rbmfcmEtHmA
Peds in the Weeds
August 7th, 2011
This was the first cancer event we attended as a family. Many opportunites have crossed my desk from the Midwest Childrens Brain Tumor Center
(http://www.advocatehealth.com/lgch/midwestchildrensbraintumorcenter), the pediatric oncology department and other pediatric cancer organizations the past year-tickets to this and that, party here and there, etc. , but this was one we were actually able to attend bc everyone was finally feeling well ( and Charito and I were ready to take that leap as a family). We even agreed to attend right alongside R and her family (remember her? 8+ yrs ago Drs Kwon and Goodell treated her for lymphoma and her sis and bro in law are G's godparents and our great friends. A little scary that 8+ yrs apart here we were attending the same event for the same ugly reasons).
The event was described as a huge party in the woods. Picnics, balloons, games, activities and the ever popular Dunk the Docs. I remember the first time I heard about it. It was during our very first clinic visit one week after the diganosis. I remember thinking "How can they talk about some party in the woods when I don't even know what is going to happen tomorrow?" It was really hard to picture any of this back then. To make anything out of each upside down day. My, my how far we have come.
When I asked the kids what their fav part of the day was:
T: "Losing my first tooth and playing mini golf."
G: "Dr. Dell splashed me! Dr Kwon got me wet!" Yes, he dunked the docs in the water tanks. He was given a free pass and Dell told him to just run up there and push the button. We will work on that pitcher's strike for the future!
As you can see from the pics-how could anyone NOT have a good time?! It is now an event we plan on attending for years to come. The detail, effort and organization put into such an event was nothing but impressive. And to see the faces of patients currently battling cancer, those who won the fight and continue to treasure the event and those attending in memory of fighters was nothing short of surreal. Another memory for us to hold onto.
This was the first cancer event we attended as a family. Many opportunites have crossed my desk from the Midwest Childrens Brain Tumor Center
(http://www.advocatehealth.com/lgch/midwestchildrensbraintumorcenter), the pediatric oncology department and other pediatric cancer organizations the past year-tickets to this and that, party here and there, etc. , but this was one we were actually able to attend bc everyone was finally feeling well ( and Charito and I were ready to take that leap as a family). We even agreed to attend right alongside R and her family (remember her? 8+ yrs ago Drs Kwon and Goodell treated her for lymphoma and her sis and bro in law are G's godparents and our great friends. A little scary that 8+ yrs apart here we were attending the same event for the same ugly reasons).
The event was described as a huge party in the woods. Picnics, balloons, games, activities and the ever popular Dunk the Docs. I remember the first time I heard about it. It was during our very first clinic visit one week after the diganosis. I remember thinking "How can they talk about some party in the woods when I don't even know what is going to happen tomorrow?" It was really hard to picture any of this back then. To make anything out of each upside down day. My, my how far we have come.
When I asked the kids what their fav part of the day was:
T: "Losing my first tooth and playing mini golf."
G: "Dr. Dell splashed me! Dr Kwon got me wet!" Yes, he dunked the docs in the water tanks. He was given a free pass and Dell told him to just run up there and push the button. We will work on that pitcher's strike for the future!
G and Nurse Jenn
G and Nurse Shell
balloons representing each patient
The balloon release
G and Dr Dell-after the dunking!
Dancing w his girlfriend Areum
choo choo
running free
Sunday, September 18, 2011
Blessings, Hopes & Wishes
Seven years ago today, September 18th, I married the most wonderful man! SEVEN years of marriage! SEVENTEEN years of being together! We are pretty damn amazing, babe!
I could go on and on about what we have accomplished, the good and the bad, in 17 yrs but the five most important things are these:
1. Us-we hold each other up and will continue to do so
2. Triston
3. Grayson
4. Caden
5. Leukemia
It baffles me to think that in 17 yrs the most life-altering events occurred in the past 400 days or so. The list seems endless at times. My previous posts describe them in detail. But here we are. Doing what we do best. Being us. Continuing to push forward.
Without a doubt Grayson's leukemia diagnosis has been the most heart-wrenching. Any moment of any day can bring back to that one sentence as my 22 mos old goofed around with his 4 yr old bro in the background and my 5 day old was just happy to see the world in all it's beauty. The lives we knew were altered forever. The memories we imagined for our kids on our wedding day shattered. But by accepting that we needed to build a new kind of life for our family of 5, a new normal, and keep the love, hope and prayers full we are able to be standing right where we are today. It may be our anniversary to celebrate but I acknowledge so much more. Another morning with my boys. To cuddle, hug and kiss as many times as I want in one hours time. I am blessed to have them all here, EVERYDAY.
A gentle reminder of the EVERYDAY was given to me today. It was too appropriate, considering how blah I have been recently. One year ago today baby boy Ewan entered our world. Less than 17 days later he was taken from this earth. Today his mama celebrates his first birthday, but only through memories and pictures. She cannot hold him, kiss him, or help him blow out his candle. That emptiness is always there for her. So much pain. I have followed her story since he was a few days old. She is an amazing writer and mother. So brave and inspirational. She put together a wonderful slide show in his honor. Here it is:
http://www.team-ewan.com/2011/09/tribute-for-ewan-on-his-first-birthday.html
Happy birthday Ewan! Your baby sister Austen will be here soon. Oh the stories your mom and dad have to share with her of your courage and strength.
As you can imagine, that slide show puts so much into perspective. I cannot imagine this earth without my boys. I will fight my hardest for a happy ending to our story (not that Kirsten and James did not fight day in and day out). I will fight right alongside my hubby forever and ever. Happy Anniversary, babe. Happy "tons of cuddles day" Triston, Grayson and Caden. Here's to a day of holding close what we have and being blessed to have it EVERYDAY. I hope for so many more to come our way. And I wish for those who are hurting to feel the love they know exists around them all day, everyday.
p.s. As for our anniversary day plans-tons of laziness, no cooking and the kids will most definitely be sleeping with us tonight!
I could go on and on about what we have accomplished, the good and the bad, in 17 yrs but the five most important things are these:
1. Us-we hold each other up and will continue to do so
2. Triston
3. Grayson
4. Caden
5. Leukemia
It baffles me to think that in 17 yrs the most life-altering events occurred in the past 400 days or so. The list seems endless at times. My previous posts describe them in detail. But here we are. Doing what we do best. Being us. Continuing to push forward.
And in tow are our 3 amazing boys.
Without a doubt Grayson's leukemia diagnosis has been the most heart-wrenching. Any moment of any day can bring back to that one sentence as my 22 mos old goofed around with his 4 yr old bro in the background and my 5 day old was just happy to see the world in all it's beauty. The lives we knew were altered forever. The memories we imagined for our kids on our wedding day shattered. But by accepting that we needed to build a new kind of life for our family of 5, a new normal, and keep the love, hope and prayers full we are able to be standing right where we are today. It may be our anniversary to celebrate but I acknowledge so much more. Another morning with my boys. To cuddle, hug and kiss as many times as I want in one hours time. I am blessed to have them all here, EVERYDAY.
A gentle reminder of the EVERYDAY was given to me today. It was too appropriate, considering how blah I have been recently. One year ago today baby boy Ewan entered our world. Less than 17 days later he was taken from this earth. Today his mama celebrates his first birthday, but only through memories and pictures. She cannot hold him, kiss him, or help him blow out his candle. That emptiness is always there for her. So much pain. I have followed her story since he was a few days old. She is an amazing writer and mother. So brave and inspirational. She put together a wonderful slide show in his honor. Here it is:
http://www.team-ewan.com/2011/09/tribute-for-ewan-on-his-first-birthday.html
Happy birthday Ewan! Your baby sister Austen will be here soon. Oh the stories your mom and dad have to share with her of your courage and strength.
As you can imagine, that slide show puts so much into perspective. I cannot imagine this earth without my boys. I will fight my hardest for a happy ending to our story (not that Kirsten and James did not fight day in and day out). I will fight right alongside my hubby forever and ever. Happy Anniversary, babe. Happy "tons of cuddles day" Triston, Grayson and Caden. Here's to a day of holding close what we have and being blessed to have it EVERYDAY. I hope for so many more to come our way. And I wish for those who are hurting to feel the love they know exists around them all day, everyday.
p.s. As for our anniversary day plans-tons of laziness, no cooking and the kids will most definitely be sleeping with us tonight!
Friday, September 9, 2011
Grateful
Remember a while back when I mentioned the upcoming Eric and Kathy radiothon for Childrens Memorial, and how I just didnt thinkI would be able to listen this year? I am here to report I was sucked in.
I started the car this morning and was immediately grasped by the story airing right then. If I had remembered it was airing today I would not have turned the radio on. . It was the tail end of the narrative about a little boy named Jack (have always loved that name). I listened in on the happy voices portraying how well he is doing today. A little guy diagnosed with leukemia at age 2. Now he is 6 and playing his first soccer game tomorrow. As the next story began I sobbed.
I KNOW we are in for a happy ending. I truly know that deep down. But listening this morning set my mood deeper. It was not until I contacted Charito that I was able to calm down. I cried on the way to work and then had to leave my classroom minutes before the kids walked in to cry some more. I just had to hear Grayson's voice, Triston's voice and Caden's laughter.
The intial sobs came from that place of disbelief I rarely need to visit. This is us. We are one of these families. My body truly ached just thinking about it. I flashed back to that parking lot and a 6 mos old Triston. It set my tone for the whole day. I tried not to let it but there was no controlling it. As I said in recent posts, I am already feeling disconnected, detached from myself and where and what I should be doing lately. Depression? Rut? Simple mood shift? And as was said many times over the cast today, you never think it is going to be you. Your family. Your darkest fears. Your time to dig deeper than you ever have to find the faith and courage to move forward. No parent should have to go there.
But as the day ends I know now I was meant to listen and I still am as I write this. It is on in the living room as the older boys play in the basement. Once I was able to contact Charito he filled me in on the rest of that beautiful boy Jack's story. He told me his family created a necklace consisting of beads that stood for any procedure Jack had to endure. This necklace was filled with beads. To compare that to what G has been through thus far put things into perspective. A perspective I am very much aware of almost all of the time but these past few weeks been ignorant of, perhaps. We are lucky. Grayson is lucky. He is doing phenomenally well all things considered. And he will continue to. I am sure there were plenty of families that had to share stories of loss on the cast today. That is not us. I am so grateful to have what I have. Sometimes no matter how hard a beautiful, innocent child fought, the illness conquered. The disease left that mommy and daddy's arms empty.
I needed that reminder today. A coworker approached me near the end of the work day, told me she intended to catch me earlier, and gave me a hug bc I had been on her mind since she listened to the cast this morning. I welcomed that hug. I was reminded that we have so many people who care, worry, pray and push right along with us. So, thank you all. I will continue to pray for those families I am hearing about right now and those I will continue to meet along our cancer path. They are suffering and fighting like us and hope to be pain free one day.All of you out there help me each day and I appreciate you and your presence in our lives. I wish you a blessed, safe, and healthy weekend. Hug your loved ones extra tight ( I sure did as I arrived home and heard my Grayson repeat his daily phrase, "thank you for coming home, mommy. Thank you for bringing Tiston!") tonight and know that I am thinking of you, too.
Now back to the radiothon (it's addictive ain't it? ) and dinner plans (and laundry, dishes...you know the mommy rest!)
I started the car this morning and was immediately grasped by the story airing right then. If I had remembered it was airing today I would not have turned the radio on. . It was the tail end of the narrative about a little boy named Jack (have always loved that name). I listened in on the happy voices portraying how well he is doing today. A little guy diagnosed with leukemia at age 2. Now he is 6 and playing his first soccer game tomorrow. As the next story began I sobbed.
I KNOW we are in for a happy ending. I truly know that deep down. But listening this morning set my mood deeper. It was not until I contacted Charito that I was able to calm down. I cried on the way to work and then had to leave my classroom minutes before the kids walked in to cry some more. I just had to hear Grayson's voice, Triston's voice and Caden's laughter.
The intial sobs came from that place of disbelief I rarely need to visit. This is us. We are one of these families. My body truly ached just thinking about it. I flashed back to that parking lot and a 6 mos old Triston. It set my tone for the whole day. I tried not to let it but there was no controlling it. As I said in recent posts, I am already feeling disconnected, detached from myself and where and what I should be doing lately. Depression? Rut? Simple mood shift? And as was said many times over the cast today, you never think it is going to be you. Your family. Your darkest fears. Your time to dig deeper than you ever have to find the faith and courage to move forward. No parent should have to go there.
But as the day ends I know now I was meant to listen and I still am as I write this. It is on in the living room as the older boys play in the basement. Once I was able to contact Charito he filled me in on the rest of that beautiful boy Jack's story. He told me his family created a necklace consisting of beads that stood for any procedure Jack had to endure. This necklace was filled with beads. To compare that to what G has been through thus far put things into perspective. A perspective I am very much aware of almost all of the time but these past few weeks been ignorant of, perhaps. We are lucky. Grayson is lucky. He is doing phenomenally well all things considered. And he will continue to. I am sure there were plenty of families that had to share stories of loss on the cast today. That is not us. I am so grateful to have what I have. Sometimes no matter how hard a beautiful, innocent child fought, the illness conquered. The disease left that mommy and daddy's arms empty.
I needed that reminder today. A coworker approached me near the end of the work day, told me she intended to catch me earlier, and gave me a hug bc I had been on her mind since she listened to the cast this morning. I welcomed that hug. I was reminded that we have so many people who care, worry, pray and push right along with us. So, thank you all. I will continue to pray for those families I am hearing about right now and those I will continue to meet along our cancer path. They are suffering and fighting like us and hope to be pain free one day.All of you out there help me each day and I appreciate you and your presence in our lives. I wish you a blessed, safe, and healthy weekend. Hug your loved ones extra tight ( I sure did as I arrived home and heard my Grayson repeat his daily phrase, "thank you for coming home, mommy. Thank you for bringing Tiston!") tonight and know that I am thinking of you, too.
Thursday, September 8, 2011
Sept clinic visit part 2
It has been more than 24 hours since our clinic visit and things have flown by at race-care pace that it is worth an update.
I forgot to mention that due to an increase in Grayson's height and weight they increased one of his oral chemo drugs a tad bit (Mercaptopurine by an additional 1/2 tablet per week). So on a weekday in which he typically took half a dose he will consume a whole tablet instead.
G was in a great mood all the remainder of yesterday. He woke in a great mood considering we all slept like crap. My best sleeper in the world child, Caden, has had some rough nights recently. He kept waking all of us last night w the every hour on the hour irritability and congestion and who the hell knows what else. Still figuring out if this is teething or cold. Either way it was a night with all 5 of us in one bed attempting to sleep. Guess who slept the worst? Not too hard to figure out huh?
Both Caden and G wore those great moods all day even w out one ounce of a nap. They did not nap until I tested my already exhausted mommy abilities and headed to Dicks Sporting Goods, Payless and Babiesrus after school. I figured as long as I had loaded C n G in the car to pickup of T (fearing rain if I had walked) I may as well get the errands done. T needed soccer gear for his team photo on Saturday, G and C needed shoes (which makes me mad bc I noticed G's gym shoes are too small 5 1/2s and I have 2 brand new pairs 7s from my mom upstairs and he is falling in between those two sizes. You would think I would have leftovers from T but G just isnt growing as fast as T did. And as for C, well my only summer baby is throwing off the advantage of leftovers and he needs a closed toe pair of shoes to ride us through fall/winter!) and then we would feel out our tired meters if we could pull of babiesrus for new cups for C. They held on strong and were very good considering we don't do this as often as we could or did before last July. But the mini naps on the way home bit me in the ass. We arrived home by 6:00pm and they were sent to bed about an hour ago and I can still hear them whispering and moving around. By the time dinner hit the table the glories of steroids kicked in for G-the appetite and crabbies. He has been whining about anything and everything since then. He even fell as he tried to ride Bryley and bumped his port (fell right onto his chest and stomach). He is completely fine, no injuries or swelling/redness. He is more pissed off at Bry for moving out from under him, a strategy I warned him many a times would happen if he kept sit up. If she is not in the mood you better be prepared for her to dismiss you. Everything hurts more when you are tired anyway. Right now he is still whining for me to "please come back" while T is crying "let me love you forever because you know I can" bc he's bummed I told him he could not sleep in my bed. Caden is talking and screaming to himself about the latest 1 yr old gossip I guess.
It has been one of those nights. I pushed the envelope today but got crap done. When I will catch up on sleep or normal, more positive thoughts who knows. But the important things were---G was excited to show daddy his new shoes (so hard to buy for when I am trying to hunt down the lightest pair for him and not spend a fortune). Caden has his first pair of gym shoes to sport tomorrow. Sidenote-as we pulled up to Payless both T n G noticed the ad for Shake It Up licensed shoes. They just had to tell me that I am not too old for them and should get a pair. Ha, thanks! T made sure to question my loyalty to the show and then approved a pair for me to try on-"You ARE still a fan, right mom?" Yes, for you I am babe! And of course as we leave I realize I never made it down the aisle for myself. just like our visit to Target last week and I got everything everyone else needed but forgot all my necessities, including monthly gear. You can see where I put myself on the totem pole. And I even had flashbacks of my mother and us at payless and thought to myself "wow, she did this every year for how many years?" as I toddled around w T n C one shoe after the other before making our final selection. Us moms work hard at the simplest of things! And T is all set for soccer season. We shall see if this is HIS sport.
Next week is a busy one. Tuesday is grandparents day at T's school and I have made arrangements for Lula to make an appearance if all my plans work out. Wednesday night is open house at his school (and it's the first Awana Spark club meeting but we will miss out to attend the school event). Thursday night is his first soccer practice. Friday is T's picture day. And Saturday he has his first soccer game. I am holding on tight for the rest of September!
I forgot to mention that due to an increase in Grayson's height and weight they increased one of his oral chemo drugs a tad bit (Mercaptopurine by an additional 1/2 tablet per week). So on a weekday in which he typically took half a dose he will consume a whole tablet instead.
G was in a great mood all the remainder of yesterday. He woke in a great mood considering we all slept like crap. My best sleeper in the world child, Caden, has had some rough nights recently. He kept waking all of us last night w the every hour on the hour irritability and congestion and who the hell knows what else. Still figuring out if this is teething or cold. Either way it was a night with all 5 of us in one bed attempting to sleep. Guess who slept the worst? Not too hard to figure out huh?
Both Caden and G wore those great moods all day even w out one ounce of a nap. They did not nap until I tested my already exhausted mommy abilities and headed to Dicks Sporting Goods, Payless and Babiesrus after school. I figured as long as I had loaded C n G in the car to pickup of T (fearing rain if I had walked) I may as well get the errands done. T needed soccer gear for his team photo on Saturday, G and C needed shoes (which makes me mad bc I noticed G's gym shoes are too small 5 1/2s and I have 2 brand new pairs 7s from my mom upstairs and he is falling in between those two sizes. You would think I would have leftovers from T but G just isnt growing as fast as T did. And as for C, well my only summer baby is throwing off the advantage of leftovers and he needs a closed toe pair of shoes to ride us through fall/winter!) and then we would feel out our tired meters if we could pull of babiesrus for new cups for C. They held on strong and were very good considering we don't do this as often as we could or did before last July. But the mini naps on the way home bit me in the ass. We arrived home by 6:00pm and they were sent to bed about an hour ago and I can still hear them whispering and moving around. By the time dinner hit the table the glories of steroids kicked in for G-the appetite and crabbies. He has been whining about anything and everything since then. He even fell as he tried to ride Bryley and bumped his port (fell right onto his chest and stomach). He is completely fine, no injuries or swelling/redness. He is more pissed off at Bry for moving out from under him, a strategy I warned him many a times would happen if he kept sit up. If she is not in the mood you better be prepared for her to dismiss you. Everything hurts more when you are tired anyway. Right now he is still whining for me to "please come back" while T is crying "let me love you forever because you know I can" bc he's bummed I told him he could not sleep in my bed. Caden is talking and screaming to himself about the latest 1 yr old gossip I guess.
It has been one of those nights. I pushed the envelope today but got crap done. When I will catch up on sleep or normal, more positive thoughts who knows. But the important things were---G was excited to show daddy his new shoes (so hard to buy for when I am trying to hunt down the lightest pair for him and not spend a fortune). Caden has his first pair of gym shoes to sport tomorrow. Sidenote-as we pulled up to Payless both T n G noticed the ad for Shake It Up licensed shoes. They just had to tell me that I am not too old for them and should get a pair. Ha, thanks! T made sure to question my loyalty to the show and then approved a pair for me to try on-"You ARE still a fan, right mom?" Yes, for you I am babe! And of course as we leave I realize I never made it down the aisle for myself. just like our visit to Target last week and I got everything everyone else needed but forgot all my necessities, including monthly gear. You can see where I put myself on the totem pole. And I even had flashbacks of my mother and us at payless and thought to myself "wow, she did this every year for how many years?" as I toddled around w T n C one shoe after the other before making our final selection. Us moms work hard at the simplest of things! And T is all set for soccer season. We shall see if this is HIS sport.
Next week is a busy one. Tuesday is grandparents day at T's school and I have made arrangements for Lula to make an appearance if all my plans work out. Wednesday night is open house at his school (and it's the first Awana Spark club meeting but we will miss out to attend the school event). Thursday night is his first soccer practice. Friday is T's picture day. And Saturday he has his first soccer game. I am holding on tight for the rest of September!
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