I stopped by the grocery store today. I ended up in the candy aisle (weird that you would find ME there). I saw the Life Savor Candies and started crying. So stupid.
So many things that Mom can't fix. I was always looking for things that I could fix - ways I could provide comfort or ease the discomfort. Jacob always complained about how nauseous he felt when his line was flushed with heprin. Each week I always scrambled to pack hard candies that he could suck on, so he wouldn't feel so gaggy.
In December I had Starlight peppermints. I've bought Life Savors, Jolly Ranchers, or Ice Breaker Sours. Even if they didn't help much during the flush, it was something that I could bring or give. It usually made a nice little snack on the drive home.
Saturday, January 24, 2009
Snippets
I'm going to need to start blogging in snippets because there's no way to collect all my thoughts and tell the whole story. Now that we are finished with chemo, the pressure is all around me to breathe a sigh of relief and return to normal. That's not exactly how it works. You know there are times that you just keep going and going - you run yourself ragged. There's no time to stop. No time to even think. You've essentially survived because you haven't had a chance to think about it or feel it all. It's all catching up to me. I'm overwhelmed at all the stuff we did these past several months.
I've had great difficulty this past month to reconcile my feelings. I joined a rhabdo-kids group filled with parents/grandparent/spouses/concerned friends of kids/teens/& some adults who have or have had rhabdomyosarcoma. With Jacob's diagnosis last July, we entered into another realm. I've been introduced and influenced by other parents that I would NEVER have met if it weren't for this dreaded disease. I've read their stories, heard the fear in their typed voices, & felt overwheming empathy, love, concern, & heartbreak for their children. Virtual strangers, but my friends. They have answered my questions and offered me amazing support.
Some of their children have become "rhabdo angels". Kids die. Each parent is horrified to even entertain the thought that it could be their son or daughter. I've spent time worrying that it could be mine. I'm grateful that right now, today, it's not. I've continued my attitude of living one day at a time. And hopefully we will all be VERY old before we have to start saying "goodbye for now." But I have been awakened to the fact that there are many parents walking around with a hole in their heart. Days will never be the same because their little one is in heaven and not in the family room.
Some may ask, "so why do you read their stories?" or "don't you just want to move on from all this and get back to a life that is more normal?" Some may advise, "you should stop thinking about the worst case scenario." My response is that I AM going to lean more in the direction that my life is taking me. We are going to embrace returning Jacob to 3rd grade and enjoy less frequent visits to the oncology office. I'm going to take my kids in public and let them sit in crowded places. I'll still make them use hand sanitizer & possibly even pack water bottles instead of drinking fountains. But I also feel an inner obligation to always remember that children get cancer. Parents have to walk their kids through the impossible. Thousands of kids are living life with a central line, with bald heads, with low blood counts, and with ridiculous treatment options.
I think it would be wrong for me to forget this terrifying experience. I need to be more caring, more understanding, more kind, and more charitable because I have been acquainted with cancer. Because I have met the most loving parents. Because I have seen the most amazing resilience in my own son and in the other cancer kids.
I'm not good at fund raising. I'm not good at making huge donations. But I'm going to do what little bit I can. And if I do a little and you do a little and we get our friends to do a little too, eventually childhood cancer will be able to get the awareness and funding that is needed.
I've had great difficulty this past month to reconcile my feelings. I joined a rhabdo-kids group filled with parents/grandparent/spouses/concerned friends of kids/teens/& some adults who have or have had rhabdomyosarcoma. With Jacob's diagnosis last July, we entered into another realm. I've been introduced and influenced by other parents that I would NEVER have met if it weren't for this dreaded disease. I've read their stories, heard the fear in their typed voices, & felt overwheming empathy, love, concern, & heartbreak for their children. Virtual strangers, but my friends. They have answered my questions and offered me amazing support.
Some of their children have become "rhabdo angels". Kids die. Each parent is horrified to even entertain the thought that it could be their son or daughter. I've spent time worrying that it could be mine. I'm grateful that right now, today, it's not. I've continued my attitude of living one day at a time. And hopefully we will all be VERY old before we have to start saying "goodbye for now." But I have been awakened to the fact that there are many parents walking around with a hole in their heart. Days will never be the same because their little one is in heaven and not in the family room.
Some may ask, "so why do you read their stories?" or "don't you just want to move on from all this and get back to a life that is more normal?" Some may advise, "you should stop thinking about the worst case scenario." My response is that I AM going to lean more in the direction that my life is taking me. We are going to embrace returning Jacob to 3rd grade and enjoy less frequent visits to the oncology office. I'm going to take my kids in public and let them sit in crowded places. I'll still make them use hand sanitizer & possibly even pack water bottles instead of drinking fountains. But I also feel an inner obligation to always remember that children get cancer. Parents have to walk their kids through the impossible. Thousands of kids are living life with a central line, with bald heads, with low blood counts, and with ridiculous treatment options.
I think it would be wrong for me to forget this terrifying experience. I need to be more caring, more understanding, more kind, and more charitable because I have been acquainted with cancer. Because I have met the most loving parents. Because I have seen the most amazing resilience in my own son and in the other cancer kids.
I'm not good at fund raising. I'm not good at making huge donations. But I'm going to do what little bit I can. And if I do a little and you do a little and we get our friends to do a little too, eventually childhood cancer will be able to get the awareness and funding that is needed.
Tuesday, January 13, 2009
Physical Therapy - Photos from December sometime
The day I brought the camera was the day that Justin wasn't there. Oops! Jacob really enjoys joking around with him. Justin met Jacob his first day at Team Physical Therapy. He kept him entertained while he does his exercises.
I was already going here twice a week for my plantar fasciitis. It has saved us several hours per week in additional appointments for us to do our therapy together.
Upon arrival, Jacob gets HEAT. He warms up his hands for 10 minutes. Then he works with his Therabar. He bends it and shakes it and twists it. Other hand exercises are gripping, rolling a wooden bar along velcro, or twisting/rolling a weight around a bar.
Then he goes to the arm bike. On this particular day, Jacob came in disguise. Most folks come in the gym shorts. Jacob comes with a mustache mask or light saber, etc.
Jacob does a series of stretching and balancing exercises.
AND lots of bouncing.
His Physical Therapist, Denise, is always real patient when Jake tries to squirm out of the stretches or tries to negotiate fewer reps of the strengthening exercises.
Jacob always gets his own locker and returns to it regularly to stow his clay or therabar. He sometimes sneaks to the front desk to get mini chocolate bars to keep him going.
We have a hard time doing his exercises at home. His leg muscles are so tight and need to be stretched more regularly.
I was already going here twice a week for my plantar fasciitis. It has saved us several hours per week in additional appointments for us to do our therapy together.
Upon arrival, Jacob gets HEAT. He warms up his hands for 10 minutes. Then he works with his Therabar. He bends it and shakes it and twists it. Other hand exercises are gripping, rolling a wooden bar along velcro, or twisting/rolling a weight around a bar.
Then he goes to the arm bike. On this particular day, Jacob came in disguise. Most folks come in the gym shorts. Jacob comes with a mustache mask or light saber, etc.
Jacob does a series of stretching and balancing exercises.
AND lots of bouncing.
His Physical Therapist, Denise, is always real patient when Jake tries to squirm out of the stretches or tries to negotiate fewer reps of the strengthening exercises.
Jacob always gets his own locker and returns to it regularly to stow his clay or therabar. He sometimes sneaks to the front desk to get mini chocolate bars to keep him going.
We have a hard time doing his exercises at home. His leg muscles are so tight and need to be stretched more regularly.
Sunday, January 11, 2009
Farewell Vincristine
Vincristine has been the most consistent chemo Jacob has received. Initially Jacob would have sharp, intense pains in his jaw. It would come on suddenly and thankfully taper off within a few minutes. We found that getting Jacob an ice pack to hold on his jaw was helpful. Before Cytoxan got hold of Jacob's sense of taste (ruining everything including ice cream), Vincristine reduced him to a softer diet. Jacob didn't like to open his mouth wide or chew anything too crunchy. Interestingly the whole extreme jaw side effect went away after about a month - like his body just accepted that it was going to be pushed into his system weekly.
For most patients, Vincristine doesn't cause nausea. But that rule didn't apply to Jacob. Many weeks after his Vincristine push he would still complain of nausea for days after chemo. Then his peripheral neuropathy seemed to pour on him all at once. This condition is supposed to be temporary, but it takes time to repair the nerves. Many patients develop "drop foot." Jacob has had some limitations to his feet and very tight muscles through his calves and thighs. But his hands and thumb muscles took the hardest hit. In the course of three weeks (two of those when he DID NOT even have Vincristine) the symptoms got real bad. Indicating that it lingers in his system longer and the side effects take time to subside. His hands curled up and he rarely extended his fingers. During those same three weeks his eyelids drooped. He looked very tired all the time.
Did Jacob whine and complain? No. (He saved his complaints for when he had to empty the dishwasher). I'd watch him try to pick up a piece of paper - he used his hands like flippers. I'd ask, "Jake, did you notice that your hands aren't really working?" He said, "yeah." I asked him if he knew why and he'd just say no. If you didn't know what to look for it could easily be missed because he compensated. Jake has always been very creative when he wants to do something. He could no longer do shirt buttons or snap his pants. (This is the kid that would spend 30 minutes at age 2 to do his buttons "by MYSELF!" With his skinnier body, he'd just shimmy his pants up and down. If that didn't work, he'd resort to asking for my help - which I did no questions asked.
He may be behind on some of his cursive writing. Using fine motor skills could sometimes be frustrating. He stopped playing with his Lego models.
Some days I'd look over while he was watching television and he'd have one eye closed or a hand over one eye. He was seeing double, but he found that if he closed one eye he could see better.
I was angry at Vincristine and worried that some of the "temporary" effects would become permanent. We brought it up with his oncologist and upon examination she could see that the dosage was too much for his system. Apparently Jacob metabolized it more slowly so it was in his system longer. The dosage was adjusted and we never saw the eye droop anymore. With physical therapy Jacob has been able to intercept the effects of Vincristine and maintain his muscle strength. Now that he has had his final dose, we hope to have his hands and feet recover completely.
For most patients, Vincristine doesn't cause nausea. But that rule didn't apply to Jacob. Many weeks after his Vincristine push he would still complain of nausea for days after chemo. Then his peripheral neuropathy seemed to pour on him all at once. This condition is supposed to be temporary, but it takes time to repair the nerves. Many patients develop "drop foot." Jacob has had some limitations to his feet and very tight muscles through his calves and thighs. But his hands and thumb muscles took the hardest hit. In the course of three weeks (two of those when he DID NOT even have Vincristine) the symptoms got real bad. Indicating that it lingers in his system longer and the side effects take time to subside. His hands curled up and he rarely extended his fingers. During those same three weeks his eyelids drooped. He looked very tired all the time.
Did Jacob whine and complain? No. (He saved his complaints for when he had to empty the dishwasher). I'd watch him try to pick up a piece of paper - he used his hands like flippers. I'd ask, "Jake, did you notice that your hands aren't really working?" He said, "yeah." I asked him if he knew why and he'd just say no. If you didn't know what to look for it could easily be missed because he compensated. Jake has always been very creative when he wants to do something. He could no longer do shirt buttons or snap his pants. (This is the kid that would spend 30 minutes at age 2 to do his buttons "by MYSELF!" With his skinnier body, he'd just shimmy his pants up and down. If that didn't work, he'd resort to asking for my help - which I did no questions asked.
He may be behind on some of his cursive writing. Using fine motor skills could sometimes be frustrating. He stopped playing with his Lego models.
Some days I'd look over while he was watching television and he'd have one eye closed or a hand over one eye. He was seeing double, but he found that if he closed one eye he could see better.
I was angry at Vincristine and worried that some of the "temporary" effects would become permanent. We brought it up with his oncologist and upon examination she could see that the dosage was too much for his system. Apparently Jacob metabolized it more slowly so it was in his system longer. The dosage was adjusted and we never saw the eye droop anymore. With physical therapy Jacob has been able to intercept the effects of Vincristine and maintain his muscle strength. Now that he has had his final dose, we hope to have his hands and feet recover completely.
Wednesday, January 7, 2009
I Heart Jacob
Today is a Tuesday and it has become my most crazy day. First was home school, then physical therapy, then counseling, then carpools to get siblings, then Cub Scouts.
When Jacob was finished with his physical therapy exercises and stretches, he went to his locker and pulled his purple lightsaber out of his bag. He then started twirling it around the gym like the JediFighter that he is. He cracks me up!!!
I'm just feeling LOTS of LOVE for my Jacob. He has always been so full of surprises. I usually like predictable things. Jake has always challenged me on that. I can always plan on Jacob surprising me by his creativity, character, cuteness, or charm. I am SOOOO supposed to be sleeping right now, but here's my little walk down memory lane.
Jacob has always loved the sand at the beach. I look forward to spending time with the kids at the beach this summer. It's a total pain to get packed up and set up on the beach, but once there it's like heaven - sheer bliss.
Jacob is modeling his BRAND NEW pair of pajamas covered in ashes and soot. Baby Jayson has been trying to get into our fireplace throughout the holidays. I was just telling Jacob that he tried to climb up the chimney as a baby just like Jayson is doing now. He thought the story was hilarious. I can't begin to tell you how black our tub was when these boys were done. Jake encouraged James to get in on the action too.
By the way, the black stains NEVER came out.
Sporting his carefree smile - full grin, eyes shut.
Train building is a serious venture (especially if you are playing with James). We just pulled these trains out last night for family time. But Jacob likes to actually BE the character, not just play with them. So he's decked out as Bob the Builder just in case something needs to be fixed on the tracks.
OH those rosy cheeks!!! This dumb felt costume that I got at Albertsons on clearance became a well loved piece of apparel.
Jake loves it when Jon starts a project. He loves working with real tools.
Here are my SuperHeros!!!
One of Jacob's MOST favorite dress-ups was taking his shirt off and putting his underwear on his head. Helped that James would laugh uncontrollably every time he did.
This is Jake's self made Harry Potter costume. You have to wear a BYU football jersey backwards with sunglasses minus the glass.
Finally, we took our little Harry to see the big movie. He had watched the first two movies a million times. He wore his whole outfit and fell asleep within the first 5 minutes of the film - TOTALLY JACOB!!!!
When Jacob was finished with his physical therapy exercises and stretches, he went to his locker and pulled his purple lightsaber out of his bag. He then started twirling it around the gym like the JediFighter that he is. He cracks me up!!!
I'm just feeling LOTS of LOVE for my Jacob. He has always been so full of surprises. I usually like predictable things. Jake has always challenged me on that. I can always plan on Jacob surprising me by his creativity, character, cuteness, or charm. I am SOOOO supposed to be sleeping right now, but here's my little walk down memory lane.
Jacob has always loved the sand at the beach. I look forward to spending time with the kids at the beach this summer. It's a total pain to get packed up and set up on the beach, but once there it's like heaven - sheer bliss.
Jacob is modeling his BRAND NEW pair of pajamas covered in ashes and soot. Baby Jayson has been trying to get into our fireplace throughout the holidays. I was just telling Jacob that he tried to climb up the chimney as a baby just like Jayson is doing now. He thought the story was hilarious. I can't begin to tell you how black our tub was when these boys were done. Jake encouraged James to get in on the action too.
By the way, the black stains NEVER came out.
Sporting his carefree smile - full grin, eyes shut.
Train building is a serious venture (especially if you are playing with James). We just pulled these trains out last night for family time. But Jacob likes to actually BE the character, not just play with them. So he's decked out as Bob the Builder just in case something needs to be fixed on the tracks.
OH those rosy cheeks!!! This dumb felt costume that I got at Albertsons on clearance became a well loved piece of apparel.
Jake loves it when Jon starts a project. He loves working with real tools.
Here are my SuperHeros!!!
One of Jacob's MOST favorite dress-ups was taking his shirt off and putting his underwear on his head. Helped that James would laugh uncontrollably every time he did.
This is Jake's self made Harry Potter costume. You have to wear a BYU football jersey backwards with sunglasses minus the glass.
Finally, we took our little Harry to see the big movie. He had watched the first two movies a million times. He wore his whole outfit and fell asleep within the first 5 minutes of the film - TOTALLY JACOB!!!!
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