I'm upset because my graph is ruined. You know, the one with X's and dashes to signify Malorie's progress through radiation? Yeah, that one - ruined. OK, fine, I didn't even remember to put it at the end of the last post. But I'm upset nonetheless.
Yesterday, a nurse attendant called Rachel to discuss the upcoming end of Mal's radiation treatment. She told Rachel that one of the other nurses had heard us talking in the recovery room about how Mal's treatment ended on February 21st, and so she was calling to correct us. According to her, Mal would be done February 16th. Rachel told her she was wrong, and went to get the treatment plan that Dr. Mansur gave us on the day of Mal's simulation. On it, in black and white, it shows the 33 treatments, three of which occur after the 16th. The nurse told Rachel that the treatment plan had changed, and insisted that Mal would be done this coming Thursday. The lady said that sometimes the doctors add a few "fluff" days to the plan. Rachel told her "Bologna" or other slightly less nice words that that effect, and then told the poor nurse attendant to go get a doctor and call us back.
It's not that we are patently against Mal's treatment only consisting of 30 treatments. In fact, the fewer treatments she gets, the less chances of long term complications from the radiation - and those can be pretty nasty. But the problem is that we were sold on being aggressive by Dr. Mansur when he was developing her treatment plan. He told Rachel and me that because Mal's cancer was a grade three, he was going to take off the kids gloves and go after it; 33 treatments, the max allowed. We gave him a paper with our signature for consent to his plan; he gave us a paper with a schedule for her thirty-three appointments.
But then something changed. Dr. Mansur created Malorie's treatment schedule, and even programmed it into the radiation machines that send the waves through her head each weekday morning. Then he moved to Cleveland. Dr. Mansur accepted a post at a children's hospital in Cleveland and left St. Louis during Mal's second week in treatment. He assured us that we would be in great hands with his interim replacement, Dr. Maholski, and that his plan would be carried out despite the change in doctors.
When the nurse attendant called back, I fielded the phone call. She told me that she had confirmed Mal would be done on Thursday. I asked her who had made the decision to change Mal's treatment, and she told me it was never intended to be 33 treatments. I called her out on that, and told her that I had the paper from Dr. Mansur in my hands and planned on bringing it to her on Monday. She then tapped furiously on a keyboard I heard in the background of the call, and told me that Dr. Mansur changed it before he left, as the prescription he entered only consisted of 30 treatments. I asked her if she could print me something with Dr. Mansur's signature and a date that showed only 30, and she gave me a solid "maybe." I tried not to shoot the messenger, but I did unload on her with some pretty heavy terms like fiduciary duty, communication breakdown, and extremely upset. Seriously, Mal has a team of 8 doctors caring for her - not one of them thought it important enough to call us to let us know they decided to change her treatment plan?
Rachel and I have an appointment with Dr. Maholski on Monday, and so we will be digging into this issue more then. I have some serious questions for him. I'm not sure if any of that will change her new plan, or if I even want it to. But I am going to unload on that man in T-minus 32 hours. Until then, we will ride out the weekend with all the joy and thanksgiving we can muster. We have faith that Mal will be fine whether she gets the three additional treatments or not. She has been terrific through all of this, and we are certain she will continue to do so. But, none of that helps me with what to do with my graph. And so, I'm upset.
XXXXXXXXXXXXXXXXXXXXXXXXXX - - - - ? ? ?
Sunday, February 12, 2012
Sunday, February 5, 2012
Mal's Palindromes
21:12. Simple enough. Twenty-one radiation treatments now complete by Malorie, and twelve left to go. Mal is holding up extremely well, showing only small signs of anything being wrong with her. 
Mostly she is fatigued, and we see that in a number of ways. She sleeps more now than we have ever seen her sleep before, and even when she is awake, she becomes tired faster than Micah does. She has developed a tendency to melt down and have more fits than she used to; although that could likely be attributed equally to fatigue and the terrible twos. Malorie’s blood counts this week were lower again, and starting to teeter just above the “critical” level, although to us she seems to be much better than her blood counts indicate. The nurses continue to reassure us that she is “relatively” high in her important numbers. And for what it’s worth, when she is awake and well rested, no one without knowledge of the situation would have any idea she was in less than optimal health. Even the hair falling out has slowed down, and the hair she has remaining on top does a pretty good job of concealing the fact that she is bald around the circumference of her head below the ears. Also, last week she showed her first signs of the radiation affecting her mouth and throat, complaining that a strawberry was “too hot.” The doctor attributed it to the acid in the strawberry bothering her tender throat, and told us to give her some Tylenol if it happened again, which it has not. We try to make it easy on her. No melon, no lemon. Nonetheless, her appetite has degraded, and she has lost one pound since radiation began. Mal’s voice also gets strained and a bit horse when she first wakes up, and it happens more often and for longer durations towards the end of the five-day long stretch of radiation on the weekdays. But, all things considered, we are terrifically grateful with her progress thus far.
Micah, for his part, is doing very well. He is starting to come down with a cold, which worries us because he might pass it along to Malorie. Otherwise, he is developing into the most charming chatterbox of a boy I have ever met. Holding a conversation with him is like trying to chase down a racecar. He makes me laugh on a daily basis, including this nugget from last week:I had just pushed the twins around in a laundry basket for about 20 minutes and then announced that it was bath-time. Micah was up second for the bath, and so while Mal was being bathed, I was undressing Micah, helping him use the potty, and generally discussing life with him. As I was doing this, I was sweating because pushing 65 pounds worth of kids in a laundry basket on carpet is hard work, so I took off my shirt.
Micah (pushing my nipples): Are these your belly buttons Dad?
Me: Nope.
Micah (pushing my nipples again): What are these Daddy?
Me: (silence)
Rachel (from the side of the bathtub where she was bathing Mal): Those are your daddy’s nipples buddy.
Micah: Are these your nippos daddy?
Me: Yeah bud, those are my nipples.
Micah (still fiddling with my chest): Your nippos are kinda squishy, daddy.
Me: Thanks a lot man.
Micah (now focusing his attention on the rest of my torso): You are kinda squishy, daddy.
Me: OK, that’s it. I’m putting my shirt back on.
And so that’s how it’s been going here lately: equal parts heart-wrench and hilarity. All the ups and downs leave us just exhausted enough to be slap happy… and forgetful. Was it a car or a cat I saw? Anyway, if there’s one thing I learned this week, it’s that once I’m done trying to sneak palindromes into a blog and Mal’s done with radiation, I’m going to have to start working out again.
Me: Nope.
Micah (pushing my nipples again): What are these Daddy?
Me: (silence)
Rachel (from the side of the bathtub where she was bathing Mal): Those are your daddy’s nipples buddy.
Micah: Are these your nippos daddy?
Me: Yeah bud, those are my nipples.
Micah (still fiddling with my chest): Your nippos are kinda squishy, daddy.
Me: Thanks a lot man.
Micah (now focusing his attention on the rest of my torso): You are kinda squishy, daddy.
Me: OK, that’s it. I’m putting my shirt back on.
And so that’s how it’s been going here lately: equal parts heart-wrench and hilarity. All the ups and downs leave us just exhausted enough to be slap happy… and forgetful. Was it a car or a cat I saw? Anyway, if there’s one thing I learned this week, it’s that once I’m done trying to sneak palindromes into a blog and Mal’s done with radiation, I’m going to have to start working out again.
Thursday, February 2, 2012
Given Much
While driving home from work today, I was listening to NPR. It's pretty much the only news I get these days, as I find myself too busy to watch the news despite the fact that it is on 24 hours a day. Anyway, I heard President Obama cite a Bible verse that had been on my mind in recent weeks, Luke 12:48. It says, "From everyone who has been given much, much will be demanded." He was using it in reference to the US tax code, which is not the context in which I have been thinking of it, but nonetheless applicable I suppose. I have been thinking of it in the context of the blessings we get on an everyday basis. Malorie having cancer stinks, but it has given me a new view of the world and those around us. Our family has been blessed with tremendous friends and family, hope and faith, love and support, courage and strength, joy and spirit. We have been given much. Rachel and I feel the need to give as well.
One of the daily rituals for Mal at radiation occurs when she first enters the Radiation Center. She takes a hard left turn and sprints perpendicular to the receptionists desk and straight for Elizabeth's Corner. Elizabeth's Corner is the children's area of the waiting room. It is walled off from the rest of the waiting area where adult cancer patients and their loved ones await treatment. Safe from the sights that could confound a child her age, Mal makes Elizabeth's Corner her home for the 15 minutes or so per day that she spends waiting to be called back for treatment. As fate would have it, Elizabeth's Corner is named for a child who was diagnosed with an ependymoma at age 5. Her tumor was removed several years ago, and according to the plaque in the room that bears her name, she is still in remission. Yet another one of the daily blessings we receive is the hope that reading about Elizabeth brings.
Four weeks ago when we started treatments, Elizabeth's Corner, for all it's cozy comfort, was bare. It had one small animal play set, a bucket of crayons, some books and three puzzles. These items were dispersed hap-hazardly amongst the 14 shelves in the room, and simply made the space look run down. The first time Rachel watched Mal and a little girl who was waiting while her Dad got radiation fight over the animal toys, she knew she wanted to make the space better.
After some furious grass-roots fundraising that included Rachel going door-to-door at some local businesses, we 
raised a little over $150 for toys in Elizabeth's Corner. Then, last Monday, Rachel and I began stocking the room with the toys and books we were able to get: Action figures and Hot Wheels for the boys, Princesses and a Tea Set for the girls. We brought in new chairs made for toddlers, brand new crayons, books and games. Thanks to the generosity of those in the local community, we were able to spruce up Elizabeth's Corner to try and make it a bit more inviting to those who find themselves there.
One of the daily rituals for Mal at radiation occurs when she first enters the Radiation Center. She takes a hard left turn and sprints perpendicular to the receptionists desk and straight for Elizabeth's Corner. Elizabeth's Corner is the children's area of the waiting room. It is walled off from the rest of the waiting area where adult cancer patients and their loved ones await treatment. Safe from the sights that could confound a child her age, Mal makes Elizabeth's Corner her home for the 15 minutes or so per day that she spends waiting to be called back for treatment. As fate would have it, Elizabeth's Corner is named for a child who was diagnosed with an ependymoma at age 5. Her tumor was removed several years ago, and according to the plaque in the room that bears her name, she is still in remission. Yet another one of the daily blessings we receive is the hope that reading about Elizabeth brings.
Four weeks ago when we started treatments, Elizabeth's Corner, for all it's cozy comfort, was bare. It had one small animal play set, a bucket of crayons, some books and three puzzles. These items were dispersed hap-hazardly amongst the 14 shelves in the room, and simply made the space look run down. The first time Rachel watched Mal and a little girl who was waiting while her Dad got radiation fight over the animal toys, she knew she wanted to make the space better. 
After some furious grass-roots fundraising that included Rachel going door-to-door at some local businesses, we 
raised a little over $150 for toys in Elizabeth's Corner. Then, last Monday, Rachel and I began stocking the room with the toys and books we were able to get: Action figures and Hot Wheels for the boys, Princesses and a Tea Set for the girls. We brought in new chairs made for toddlers, brand new crayons, books and games. Thanks to the generosity of those in the local community, we were able to spruce up Elizabeth's Corner to try and make it a bit more inviting to those who find themselves there. Although our efforts in Elizabeth's Corner were small (and for good reason, the staff at the hospital told us to stop bringing in toys because they were responsible for keeping the area clean once we left), it gave us a great feeling. Like any gift, hope and love is great to receive and even better to give. For that reason, we have shifted our efforts to supporting a children's cancer charity by hosting a benefit event on Mal's behalf. We have set the date of March 31st for our event, which will be a trivia night and silent auction that we hope will be a celebration of Mal's completion of radiation. All the proceeds from the night will go to a charity that Rachel and I handpicked because of the great work they have done with Mal and the other kids going through treatment with us at Siteman Cancer Center. The charity is called Friends of Kids With Cancer, and we are hoping that we leave them speechless feeling just as loved as we have felt over the past few months. Our family has been given much... the book of Luke tell us what comes next.
For those interested in contributing to Mal's benefit either by attendance or other means, more information will be posted in the coming weeks.
XXXXXXXXXXXXXXXXXXXX - - - - - - - - - - - - -
PS - Rachel, I couldn't be more proud of you for what you've done with Elizabeth's Corner. To Jenna, Jess, Chris, Karl, Brian and all the others helping with Mal's Benefit, thank you from the bottom of my heart for your assistance in making our dream come to fruition.
Friday, January 27, 2012
It's No Big Deal
It's only hair. It's just hair. It's no big deal. Vanilla Ice used to have swooshes and slashes and shapes shaved into his head. Now he looks like a normal guy. It's no big deal. Madonna was a blonde, then a brunette, then a redhead, then black haired, and then I lost track. I think Gwen Stefani had green hair. Who cares? Even I'm guilty. In high school I had frosted tips, a super-cool hair-style in the 90's where you dye the ends of your hair blonde and then spike it. Looked good at the time. Looks silly now. It's only hair. It's just hair. So why did it make us feel so bad?
This morning started like all the other days did this week, with Mal charging full speed into the radiation treatment center. The receptionist smiled. The elderly couple in the corner waved. Mal didn't notice. She changed course and veered to the kids area of the waiting room. When we were called to the patient area for the nurse to get her vitals, Mal sat on Rachel's lap. And then it happened. Rachel noticed a group of hair that had fallen out into the hood of Mal's sweatshirt. As a bystander to the vital signs routine, I saw it all go down. Rachel's eyes widened, then they started to well with tears as she looked up to me. I gave Rachel a stern look, like a teacher scolding a misguided pupil, and bobbed my head towards the nurse. Rach locked the tears up and focused on the nurse. Mal didn't notice.
Once Mal was anesthetized for the day, Rachel and I shared a hug and then walked back into the waiting room to wait for Mal to finish her treatment. As we broke the threshold of the doors, Rachel was unable to keep her composure. Out in the waiting room, a wonderful man named Greg, who is getting treatment for a sarcoma on his leg, and a woman named Michelle, whose husband is being treated for brain cancer, saw Rachel come through the doors ahead of me and knew something was wrong. They did a great job of sharing a prayer and words of comfort with Rachel and me about Mal's hair loss. "It's only hair," they said. "It's just hair. It's no big deal."
Mal left a good portion of her hair on the hospital stretcher upon which she wakes up from her treatments. Her hair continued to fall out on her bed during nap, and into her hoodie throughout the day. By bath time, her hair had thinned in back to about a third of what is was 24 hours ago. When Rachel brushed it after bath time, more fell out. Mal didn't notice. It's only hair. It's just hair. It's no big deal.
Except that it is a big deal. For the past three-plus weeks, outside of the few hours per day that we spend at the hospital (and the occasional PICC Line scare) Mal has seemed like a normal girl. She maintained her energy, kept up her joy for life, and faced cancer with a smile on her face even when we could not. It was a great illusion. Even when we knew in our mind that Mal was fighting brain cancer, we could allow ourselves a few moments each day to pretend that she was fine. She looked fine. She acted fine. But now, the bruises are settling in under her eyes, and her hair is falling out by the handful. Our illusion is gone. Our baby girl is a cancer patient in our hearts, minds and eyes.
No matter how much you prepare yourself for something like your kids hair falling out, it doesn't work. The sheer shock and sadness is overwhelming. Both Rachel and I spent today in various states of grief, mourning the loss of Mal's hard-earned auburn locks. We swept it up behind her. We washed it down the drain. We debated what to do with the remaining hair. Mal didn't notice.
But I kept coming back to what our friends said in the wiating room. It's only hair. It's just hair. The fact that it fell out means the radiation treatment is working and we are killing the fast-growing cells and eliminating any left over ependymoma. Her hair will grow back. Our hearts will mend. Mal will get better, and bigger, and forget about being bald again. And one day Rachel will do Mal's hair for the Homecoming dance. And some night I will run my hands through her hair while we snuggle and watch a movie. That day is coming soon, and on those days I will not remember the way I feel tonight. Hair grows back just like we change our moods; only hair takes a little bit longer. It's only hair. It's just hair. It's no big deal.
XXXXXXXXXXXXXXXX - - - - - - - - - - - - - - - - -
This morning started like all the other days did this week, with Mal charging full speed into the radiation treatment center. The receptionist smiled. The elderly couple in the corner waved. Mal didn't notice. She changed course and veered to the kids area of the waiting room. When we were called to the patient area for the nurse to get her vitals, Mal sat on Rachel's lap. And then it happened. Rachel noticed a group of hair that had fallen out into the hood of Mal's sweatshirt. As a bystander to the vital signs routine, I saw it all go down. Rachel's eyes widened, then they started to well with tears as she looked up to me. I gave Rachel a stern look, like a teacher scolding a misguided pupil, and bobbed my head towards the nurse. Rach locked the tears up and focused on the nurse. Mal didn't notice.
Once Mal was anesthetized for the day, Rachel and I shared a hug and then walked back into the waiting room to wait for Mal to finish her treatment. As we broke the threshold of the doors, Rachel was unable to keep her composure. Out in the waiting room, a wonderful man named Greg, who is getting treatment for a sarcoma on his leg, and a woman named Michelle, whose husband is being treated for brain cancer, saw Rachel come through the doors ahead of me and knew something was wrong. They did a great job of sharing a prayer and words of comfort with Rachel and me about Mal's hair loss. "It's only hair," they said. "It's just hair. It's no big deal."Mal left a good portion of her hair on the hospital stretcher upon which she wakes up from her treatments. Her hair continued to fall out on her bed during nap, and into her hoodie throughout the day. By bath time, her hair had thinned in back to about a third of what is was 24 hours ago. When Rachel brushed it after bath time, more fell out. Mal didn't notice. It's only hair. It's just hair. It's no big deal.
Except that it is a big deal. For the past three-plus weeks, outside of the few hours per day that we spend at the hospital (and the occasional PICC Line scare) Mal has seemed like a normal girl. She maintained her energy, kept up her joy for life, and faced cancer with a smile on her face even when we could not. It was a great illusion. Even when we knew in our mind that Mal was fighting brain cancer, we could allow ourselves a few moments each day to pretend that she was fine. She looked fine. She acted fine. But now, the bruises are settling in under her eyes, and her hair is falling out by the handful. Our illusion is gone. Our baby girl is a cancer patient in our hearts, minds and eyes.
No matter how much you prepare yourself for something like your kids hair falling out, it doesn't work. The sheer shock and sadness is overwhelming. Both Rachel and I spent today in various states of grief, mourning the loss of Mal's hard-earned auburn locks. We swept it up behind her. We washed it down the drain. We debated what to do with the remaining hair. Mal didn't notice.
But I kept coming back to what our friends said in the wiating room. It's only hair. It's just hair. The fact that it fell out means the radiation treatment is working and we are killing the fast-growing cells and eliminating any left over ependymoma. Her hair will grow back. Our hearts will mend. Mal will get better, and bigger, and forget about being bald again. And one day Rachel will do Mal's hair for the Homecoming dance. And some night I will run my hands through her hair while we snuggle and watch a movie. That day is coming soon, and on those days I will not remember the way I feel tonight. Hair grows back just like we change our moods; only hair takes a little bit longer. It's only hair. It's just hair. It's no big deal.
XXXXXXXXXXXXXXXX - - - - - - - - - - - - - - - - -
Saturday, January 21, 2012
The PICC That Wouldn't Stay
Once upon a time there was a little PICC Line. It had no name. The PICC Line was born on January 5th, 2012 in a land called MaloriesArm (which had two capital letters in its name for no good reason). That pesky little PICC Line just could not sit still. In fact, every time there was not something holding it down, it tried to leave MaloriesArm and see the light of day. So, when the kind nurses from Children's Hospital tried to change the bandage covering the PICC Line on Thursday, it decided to venture out on its own. As soon as the bandage was off, so was the PICC, racing from MaloriesArm in search of adventure and fresh air. The nurses were not amused, and neither were we. Thus, the little PICC Line without a name was replaced today by surgical procedure. See you later, little PICC Line. The new one is stitched into place to ensure it will not try any shenanigans... and they all lived happily ever after.
OK, I am accustomed to ad-libbing bedtime stories to "cut them short" as Rachel puts it, and help the twins get to bed on time when they pick a longer book to read at bedtime. The story covers the gist of the last few days, as Mal had to have her PICC replaced today because the first one seemed intent on getting out of her arm. Yesterday, during Mal's weekly bandage change and site cleaning, the PICC Line just started to progress out of her arm as soon as the tape holding it down was removed. This was the second week in a row that it migrated. Once the IV line had made it out of the vein, it could not just be shoved back in for risk of infection, so we had no choice but to have it replaced today. So, immediately following Mal's 11th radiation treatment this morning, she was taken over to the same-day surgery center and the IV line was replaced. This would not have been so bad if it didn't entail a second anesthesia within three hours.
Rachel and I were very worried about Mal not being able to follow routine and eat after she awoke from her radiation treatment, but she was great. She snuggled with me, played paper dolls with Rach, and watched Sesame Street in the two hours between her waking up from radiation and her second procedure. She could not eat or drink because she had to be put under again, but she didn't protest much, and seemingly understood every time we told her that she had to wait.
So, two weeks down and four-and-a-half to go. 33.33% of radiation complete. The fatigue is definitely setting in for Mal (and me too), but we have the wonderful respite of a weekend to aid us in getting ready for next week. Five days a week at the hospital, today for almost 8 hours, can tire out even the toughest of kids and parents. Top that with the fact that Mal's blood counts are dipping, meaning that her immune system is lower than it should be, and we could really use some rest. Although the nurse who gave us the blood test results did a great job of assuring us that her counts are in the "normal" range for a cancer patient, it is still alarming to see a test result that has "LOW" in all capital letters alongside every meaningful result. But, as you can read above, the story of The PICC Line That Wouldn't Stay has a happy ending... I mean, it says right there that "they all lived happily ever after." We have seen no major complications from treatment yet, and have faith in Jesus that all will be well for us for the next 22 treatments.
XXXXXXXXXXX - - - - - - - - - - - - - - - - - - - - - -
OK, I am accustomed to ad-libbing bedtime stories to "cut them short" as Rachel puts it, and help the twins get to bed on time when they pick a longer book to read at bedtime. The story covers the gist of the last few days, as Mal had to have her PICC replaced today because the first one seemed intent on getting out of her arm. Yesterday, during Mal's weekly bandage change and site cleaning, the PICC Line just started to progress out of her arm as soon as the tape holding it down was removed. This was the second week in a row that it migrated. Once the IV line had made it out of the vein, it could not just be shoved back in for risk of infection, so we had no choice but to have it replaced today. So, immediately following Mal's 11th radiation treatment this morning, she was taken over to the same-day surgery center and the IV line was replaced. This would not have been so bad if it didn't entail a second anesthesia within three hours.
Rachel and I were very worried about Mal not being able to follow routine and eat after she awoke from her radiation treatment, but she was great. She snuggled with me, played paper dolls with Rach, and watched Sesame Street in the two hours between her waking up from radiation and her second procedure. She could not eat or drink because she had to be put under again, but she didn't protest much, and seemingly understood every time we told her that she had to wait.
So, two weeks down and four-and-a-half to go. 33.33% of radiation complete. The fatigue is definitely setting in for Mal (and me too), but we have the wonderful respite of a weekend to aid us in getting ready for next week. Five days a week at the hospital, today for almost 8 hours, can tire out even the toughest of kids and parents. Top that with the fact that Mal's blood counts are dipping, meaning that her immune system is lower than it should be, and we could really use some rest. Although the nurse who gave us the blood test results did a great job of assuring us that her counts are in the "normal" range for a cancer patient, it is still alarming to see a test result that has "LOW" in all capital letters alongside every meaningful result. But, as you can read above, the story of The PICC Line That Wouldn't Stay has a happy ending... I mean, it says right there that "they all lived happily ever after." We have seen no major complications from treatment yet, and have faith in Jesus that all will be well for us for the next 22 treatments.
XXXXXXXXXXX - - - - - - - - - - - - - - - - - - - - - -
Thursday, January 19, 2012
Dynamic Routine
Routines are nice. They help you to plan your day by knowing what to expect to happen at any given time. But, when you get too stuck in a routine, you find yourself in a rut, challenged to break the inertia of a routine that has become a habit. On the other hand, people who say they like to have every day be completely different from the last are liars. No one wants everyday to be completely different – because if you ever found something that you loved to do, you would have to dismiss it and just move along the next day. So, we all find some niche somewhere between being a slave to a routine and complete unpredictability in our lives. Therefore, it is not surprising that the past week has brought some new structure to our lives, but at the same time a level of volatility that certainly is keeping life interesting.
All of the doctors and nurses told us that eventually we would find our rhythm in regards to getting Mal to radiation in the mornings, and they we right. Our new routine may not be comfortable, but it will work for the next month and a week. Rachel wakes up just after five to get through the shower, with me waking up about 20 minutes later to get through the wash. We wake Mal to leave for treatment at around 6:15 and are out the door by 6:30 on days where Micah stays home with a sitter. On the days where Micah has to go to another person’s house for care, we back up the schedule by 15 minutes. Mal gets to watch a movie on the way to the hospital, and very rarely makes a peep during the ride. Once we arrive at the Siteman Cancer Center, we go to the small children’s waiting area to await our nurse. Mal gets her vitals taken, and then is anesthetized for treatment by about 7:30.
Typically Mal wakes up about 30-40 minutes later, and we turn the radiation recovery room into our breakfast nook for 20 or so minutes after that. Mal Pal’s breakfasts now consist of Pop-Tarts and flavored applesauce, with the occasional Cheetos or Chex Mix thrown in to keep her from throwing a fit while recovering from the anesthesia. Another movie on the ride home (I now have the entire Princess Stories DVD memorized) and most days we’re back to the house by 10.
As I said, there are the occasional curveballs that make each day a little different. Yesterday, Mal did not want to get up in the morning, and actually threw a fit as I got her dressed, crying “I want to sleep, Daddy. I want to sleep.” We are starting to notice a gradual slip into the decreased energy that the doctors told us would come for Malorie. Tonight, for instance, Micah and Rachel wrestled and read books for 20 minutes in the family room. Usually Malorie would be all over that event, but instead she got out her sleeping bag, asked me to go get her “friends” (toddler code word for the four Elmo’s, the Cookie Monster, assorted beanie babies and other hangers-on and cronies that compromise Mal’s night-time entourage) and then sing her songs. I spent that 20 minutes on the floor trying not to sound too much like Peter Brady while cranking out hits such as "ABC's" and "Holly Jolly Christmas.". One day Mal decided not to take a nap and then was in a terrible mood all night. Micah also helps to break the routine with his daily antics and general silliness. He has been a real trouper through all the shuffling between baby-sitters and shifting routines.
Only one day last week was our loosely defined routine majorly disturbed, and that was Thursday. Thursdays are the dedicated day for changing the dressing on Mal’s PICC line, and when that was being done, the nurses realized that 7 cm of IV tube was dangling from Malorie’s arm. This was a bad thing, since only 4 cm were left exposed following her surgery. So, somehow, 3 cm worth of IV tubing got dislodged and pulled out from inside her body. Immediately following her radiation treatment, Mal had to go get an X-ray taken to ensure the IV line was still all the way into her central artery in her chest. If it was no longer in there, she would need to be put-under again to undergo a procedure to replace the PICC line. When she woke up from anesthesia that day, she was still not allowed to eat in case she needed to be anesthetized for another surgery. Mal was whisked away from the recovery room/breakfast nook and taken up to radiology and was not a fan of this break in routine. Luckily, the x-ray showed that her PICC line was still in her artery, although not as deep as it once had been. However, the nurses also discovered at this time that Mal’s PICC was not drawing blood back (although it still could administer medicine). Mal was then taken from radiology to the hematology/oncology clinic, where the nurses studied her PICC and contemplated giving her a de-clotting medicine to clear any potential blood clots on the end of the tube. Just the mention of a blood clot so near to my daughter’s heart sent me into a tizzy, and I began studying the faces of the team of nurses attending to Mal to try to gauge the danger she was in. However, somehow through their prodding, Mal’s IV line began drawing blood again, and the de-clotter was not needed. The common theory as to why the IV just started working without intervention was that it had been stuck against the wall of her artery, and then just adjusted. I don’t pretend to be an IV expert, so I bought the explanation, but certainly don’t want to go through that experience again.
The only other big break from routine was Saturday morning, when the twins transformed for the first time into Super Micah and Super Mal. If you have not yet read our friend Nicole’s account of procuring the new outfits for the twins, stop reading my blather right now and go to this link: http://www.mybottlesup.com/2012/01/tutu-lady-helps-our-klug-crew and then come back. The pictures will mean a lot more to you if you read her heartfelt and well written blog entry (and watched the video). Thanks, Nic.
All of the doctors and nurses told us that eventually we would find our rhythm in regards to getting Mal to radiation in the mornings, and they we right. Our new routine may not be comfortable, but it will work for the next month and a week. Rachel wakes up just after five to get through the shower, with me waking up about 20 minutes later to get through the wash. We wake Mal to leave for treatment at around 6:15 and are out the door by 6:30 on days where Micah stays home with a sitter. On the days where Micah has to go to another person’s house for care, we back up the schedule by 15 minutes. Mal gets to watch a movie on the way to the hospital, and very rarely makes a peep during the ride. Once we arrive at the Siteman Cancer Center, we go to the small children’s waiting area to await our nurse. Mal gets her vitals taken, and then is anesthetized for treatment by about 7:30.
Typically Mal wakes up about 30-40 minutes later, and we turn the radiation recovery room into our breakfast nook for 20 or so minutes after that. Mal Pal’s breakfasts now consist of Pop-Tarts and flavored applesauce, with the occasional Cheetos or Chex Mix thrown in to keep her from throwing a fit while recovering from the anesthesia. Another movie on the ride home (I now have the entire Princess Stories DVD memorized) and most days we’re back to the house by 10.As I said, there are the occasional curveballs that make each day a little different. Yesterday, Mal did not want to get up in the morning, and actually threw a fit as I got her dressed, crying “I want to sleep, Daddy. I want to sleep.” We are starting to notice a gradual slip into the decreased energy that the doctors told us would come for Malorie. Tonight, for instance, Micah and Rachel wrestled and read books for 20 minutes in the family room. Usually Malorie would be all over that event, but instead she got out her sleeping bag, asked me to go get her “friends” (toddler code word for the four Elmo’s, the Cookie Monster, assorted beanie babies and other hangers-on and cronies that compromise Mal’s night-time entourage) and then sing her songs. I spent that 20 minutes on the floor trying not to sound too much like Peter Brady while cranking out hits such as "ABC's" and "Holly Jolly Christmas.". One day Mal decided not to take a nap and then was in a terrible mood all night. Micah also helps to break the routine with his daily antics and general silliness. He has been a real trouper through all the shuffling between baby-sitters and shifting routines.
Only one day last week was our loosely defined routine majorly disturbed, and that was Thursday. Thursdays are the dedicated day for changing the dressing on Mal’s PICC line, and when that was being done, the nurses realized that 7 cm of IV tube was dangling from Malorie’s arm. This was a bad thing, since only 4 cm were left exposed following her surgery. So, somehow, 3 cm worth of IV tubing got dislodged and pulled out from inside her body. Immediately following her radiation treatment, Mal had to go get an X-ray taken to ensure the IV line was still all the way into her central artery in her chest. If it was no longer in there, she would need to be put-under again to undergo a procedure to replace the PICC line. When she woke up from anesthesia that day, she was still not allowed to eat in case she needed to be anesthetized for another surgery. Mal was whisked away from the recovery room/breakfast nook and taken up to radiology and was not a fan of this break in routine. Luckily, the x-ray showed that her PICC line was still in her artery, although not as deep as it once had been. However, the nurses also discovered at this time that Mal’s PICC was not drawing blood back (although it still could administer medicine). Mal was then taken from radiology to the hematology/oncology clinic, where the nurses studied her PICC and contemplated giving her a de-clotting medicine to clear any potential blood clots on the end of the tube. Just the mention of a blood clot so near to my daughter’s heart sent me into a tizzy, and I began studying the faces of the team of nurses attending to Mal to try to gauge the danger she was in. However, somehow through their prodding, Mal’s IV line began drawing blood again, and the de-clotter was not needed. The common theory as to why the IV just started working without intervention was that it had been stuck against the wall of her artery, and then just adjusted. I don’t pretend to be an IV expert, so I bought the explanation, but certainly don’t want to go through that experience again.
The only other big break from routine was Saturday morning, when the twins transformed for the first time into Super Micah and Super Mal. If you have not yet read our friend Nicole’s account of procuring the new outfits for the twins, stop reading my blather right now and go to this link: http://www.mybottlesup.com/2012/01/tutu-lady-helps-our-klug-crew and then come back. The pictures will mean a lot more to you if you read her heartfelt and well written blog entry (and watched the video). Thanks, Nic.
Finally, as I prepare to post this blog and then return to my ever-changing daily routine, I wanted to figure out a way to make a graph or something to show how far into treatment we have made it (27.27%, but who’s counting?) but was too lazy to learn the coding to do so on this blog, so here is the laziest graph ever. When you see 33 X’s and 0 –‘s, you will know we are done.
XXXXXXXXX – – – – – – – – – – – – – – – – – – – – – – – –
XXXXXXXXX – – – – – – – – – – – – – – – – – – – – – – – –
Wednesday, January 11, 2012
At Least We're Breathing
Yesterday we got to see a beautiful little five-year-old girl named Maddie ring the bell to signal the completion of her radiation treatments. While Maddie and Mal were getting their radiation treatments simultaneously, we exchanged cancer stories with her parents. Maddie has a different cancer than Mal; one that is more aggressive and had spread to more of her body. It left her brain and invaded her sinuses. She's already been through surgeries as well as six-plus weeks of chemotherapy and radiation. We congratulated her parents on the completion of radiation, and they thanked us before stunning us by telling us that Maddie now has 37 more weeks of chemotherapy. Nine more months of pain. "At least she is still at home," Maddie's parents told us. "She sleeps a lot, but she can still be with her family."
Mal is now four treatments into her radiation, which will be 33 treatments in all. I guess I missed my chance to officially say that "we are the 9.09%," when three treatments were complete. All hokey Occupy Fractions jokes aside, Mal has held up fairly well so far. She has been a bit shaky waking up from her anesthesia naps after her treatments, but bounces back very well throughout the day. By noon she has been essentially normal, although for the last two days she did take extended naps. We have just started to notice fatigue outside of nap time, and she is still a week or so out from any expected hair loss. The scar where the tumor was removed has begun changing color from a dark purple to red, and we are not sure that is normal, but the doctors did warn us that there would likely be some skin burns near the site of the radiation treatment. Probably the worst part of the week for Mal has been a cough she has developed. She is getting a cold, and the frequent anesthesia and radiation are exacerbating it. Last night she woke up coughing so hard that she threw up in her bed.
Mal has also become accustomed to having her PICC line, and resumed normal use of her right arm. The twice daily heparin flushes to keep the end of the IV from clotting have gone from traumatic to annoyance for Mal, and as we approach the one week mark since her surgery to implant the PICC, we are hoping that eventually the practice becomes routine. Baths are still a bit difficult, but also seem to be getting better.
As well as Malorie is doing, Rachel and I are still struggling to find the perspective that Maddie's parents held. Sometimes we are happy, but other times it is more difficult to remain upbeat. Molehills seem to turn into mountains regularly these days. Where I used to be a pretty even keeled person, able to keep a cool demeanor and calm disposition during stressful times, now my moods seem to swing erratically through extremes. Joy one moment, anger the next. For every moment I spend with the kids, happily watching them play, there is also a moment of darkness, when I am frightened of the path to come. At times I worry more than I should, and fight to remind myself of the great blessings we have already been given.
So tonight I want to focus on "At Least," the statement that always seems to be a prelude to something we have going for us instead of the negative aspects of the situation. At least Mal's cancer seems to be controlled. Victory is hard to measure in this war, but we have won all the key battles so far. At least we have each other. Our family is drawing closer by the day, and this episode has redefined our relationships with friends, family and God. At least my job situation is stable. It is stressful to worry about pulling my weight at a time like this, but my coworkers have really done a lot to relieve that stress by being understanding and thoughtful. At least we're not hungry. We may be tired, but we're well fed, warm, safe and secure at night.
Things are probably going to get worse before they get better. And I know that I will continue to struggle to find perspective at the times I am feeling low. But thoughts of Maddie, and her family rallying around her in her moment of conquest over radiation all while knowing their difficult road ahead will help to remind me to keep "at least" on the tip of my tongue. We don't know how Maddie's battle with cancer will turn out... Mal's either for that matter. But at least we made it this far. At least we get to see those two courageous girls live to inspire us tomorrow.
Mal is now four treatments into her radiation, which will be 33 treatments in all. I guess I missed my chance to officially say that "we are the 9.09%," when three treatments were complete. All hokey Occupy Fractions jokes aside, Mal has held up fairly well so far. She has been a bit shaky waking up from her anesthesia naps after her treatments, but bounces back very well throughout the day. By noon she has been essentially normal, although for the last two days she did take extended naps. We have just started to notice fatigue outside of nap time, and she is still a week or so out from any expected hair loss. The scar where the tumor was removed has begun changing color from a dark purple to red, and we are not sure that is normal, but the doctors did warn us that there would likely be some skin burns near the site of the radiation treatment. Probably the worst part of the week for Mal has been a cough she has developed. She is getting a cold, and the frequent anesthesia and radiation are exacerbating it. Last night she woke up coughing so hard that she threw up in her bed.
Mal has also become accustomed to having her PICC line, and resumed normal use of her right arm. The twice daily heparin flushes to keep the end of the IV from clotting have gone from traumatic to annoyance for Mal, and as we approach the one week mark since her surgery to implant the PICC, we are hoping that eventually the practice becomes routine. Baths are still a bit difficult, but also seem to be getting better.
As well as Malorie is doing, Rachel and I are still struggling to find the perspective that Maddie's parents held. Sometimes we are happy, but other times it is more difficult to remain upbeat. Molehills seem to turn into mountains regularly these days. Where I used to be a pretty even keeled person, able to keep a cool demeanor and calm disposition during stressful times, now my moods seem to swing erratically through extremes. Joy one moment, anger the next. For every moment I spend with the kids, happily watching them play, there is also a moment of darkness, when I am frightened of the path to come. At times I worry more than I should, and fight to remind myself of the great blessings we have already been given.
So tonight I want to focus on "At Least," the statement that always seems to be a prelude to something we have going for us instead of the negative aspects of the situation. At least Mal's cancer seems to be controlled. Victory is hard to measure in this war, but we have won all the key battles so far. At least we have each other. Our family is drawing closer by the day, and this episode has redefined our relationships with friends, family and God. At least my job situation is stable. It is stressful to worry about pulling my weight at a time like this, but my coworkers have really done a lot to relieve that stress by being understanding and thoughtful. At least we're not hungry. We may be tired, but we're well fed, warm, safe and secure at night.
Things are probably going to get worse before they get better. And I know that I will continue to struggle to find perspective at the times I am feeling low. But thoughts of Maddie, and her family rallying around her in her moment of conquest over radiation all while knowing their difficult road ahead will help to remind me to keep "at least" on the tip of my tongue. We don't know how Maddie's battle with cancer will turn out... Mal's either for that matter. But at least we made it this far. At least we get to see those two courageous girls live to inspire us tomorrow.
Subscribe to:
Posts (Atom)
