Dear American Cancer Society-
Thank you for sending a reimbursement check to help us with gas costs as we travel to and from the weekly appointments at the clinic/hospital. I'm thankful for those who have provided funds to ease our burden.
Sincerely,
Jennifer - Mother of a son fighting Embryonal Rhabdomyosarcoma
****
The American Cancer Society has a program that allows up to $400 annual reimbursement for miles traveled for cancer treatment.
Wednesday, September 24, 2008
Thursday, September 18, 2008
A Look Around Unit 4800
I still haven't posted all the pics from Jacob's first hospital stay. Snapped a few more. Thought you should have a glimpse of where Jacob is and where I've been for the past 24 hours.
Welcome Home! This is our shared room. Jacob is in bed 1. During our first hospital visit, Jacob was in bed 2 (until he was moved into isolation).
Jacob gets the hospital bed (obviously). The brown chair rocks and reclines slightly. I like that it's padded. Purple chair pulls out in a long narrow bed that even Jon can fit on. That doesn't make it comfortable - just long & available.
There's a little white board where the nurse on shift puts her name.
When Jacob is getting treatments, they keep stacking these little beeping boxes on top of each other. The one on top pushes meds into his line.
When Jacob is not in the playroom but is still feeling well, he likes to play his Nintendo DS or watch Nickelodeon. Notice the tray of untouched food on the table.
Jacob is much more relaxed when he is hanging out in the playroom (harder to take pictures because it's their policy that you can't include other patients in the photo). He was playing Super Mario Smash Brothers Brawl - a totally violent teenager game. He was having a great time with one of the volunteers. I think Jacob even talked to him. I'm not a fan of violent games, but he's fighting cancer. Can it really hurt for him to wiggle a remote control and fight a video game character too?
Welcome Home! This is our shared room. Jacob is in bed 1. During our first hospital visit, Jacob was in bed 2 (until he was moved into isolation).
Jacob gets the hospital bed (obviously). The brown chair rocks and reclines slightly. I like that it's padded. Purple chair pulls out in a long narrow bed that even Jon can fit on. That doesn't make it comfortable - just long & available.
There's a little white board where the nurse on shift puts her name.
When Jacob is getting treatments, they keep stacking these little beeping boxes on top of each other. The one on top pushes meds into his line.
When Jacob is not in the playroom but is still feeling well, he likes to play his Nintendo DS or watch Nickelodeon. Notice the tray of untouched food on the table.
Jacob is much more relaxed when he is hanging out in the playroom (harder to take pictures because it's their policy that you can't include other patients in the photo). He was playing Super Mario Smash Brothers Brawl - a totally violent teenager game. He was having a great time with one of the volunteers. I think Jacob even talked to him. I'm not a fan of violent games, but he's fighting cancer. Can it really hurt for him to wiggle a remote control and fight a video game character too?
Wednesday, September 17, 2008
Make-a-Wish
Jon talked with Dr. Matthias more today about Jacob's nighttime drama. He has always been a wild sleeper, but the thrashing and grinding of teeth has been bumped up. We attribute this to the emotional trauma that Jacob is trying to work out in his sleep. He wakes up in the night - sometimes because of regression to bed wetting (he's too tired to get himself up until he's wet & freezing). He is also acting frightened. He comes to sleep on our bedroom floor routinely - sometimes he tries to crawl into bed with us. It's risky sleeping next to this boy because he kicks. Sometimes he sleep walks to other spots in the house. I found him sleeping on the landing between the stairs recently. Anyway, they talked about the possibility of going to Cancer Camp. Jacob needs a chance to get out and do something more normal and more fun.
Later at the hospital the social worker was sent to Jacob's room to discuss the possibilities of making a wish. He kind of lit up at some of the possibilities. I thought that wishes were for when you reached the end of treatment or when you reached the end of the journey, but I guess wishes are granted at different times. When it came right down to it, when asked what he'd wish for Jacob said, "I wish I didn't have cancer."
I asked Jon if they were able to do THAT wish. Because it's what I wish too.
Later at the hospital the social worker was sent to Jacob's room to discuss the possibilities of making a wish. He kind of lit up at some of the possibilities. I thought that wishes were for when you reached the end of treatment or when you reached the end of the journey, but I guess wishes are granted at different times. When it came right down to it, when asked what he'd wish for Jacob said, "I wish I didn't have cancer."
I asked Jon if they were able to do THAT wish. Because it's what I wish too.
Broken in Eight Hundred Pieces
It's nice that you all think I'm so strong and capable. I only give the illusion that we are keeping it all together. We are trying. We have managed to keep all the pieces - trouble is that they are scattered all over the floor in 800 (apparently a favorite number of mine - I use it all the time when I exaggerate) broken pieces. I'm not keeping "it" together, but I'm not losing "it" either. At least not yet.
My anxiety peaks every three weeks (no NOT a menstrual cycle -worse) when Jacob is due for his VAC. Vincristine, Actinomycin-D, Cytoxan. I don't like being in hospitals. But more than that I don't like needing treatment from hospitals.
I'm restless. I'm tired. I'm worried. I'm burnt out.
It's mean to have you read this because you can't fix it. I can't fix it. I'm tired of trying to assure everyone that we're fine. We will be, but it's not fine with me to feel so helpless right now.
My anxiety peaks every three weeks (no NOT a menstrual cycle -worse) when Jacob is due for his VAC. Vincristine, Actinomycin-D, Cytoxan. I don't like being in hospitals. But more than that I don't like needing treatment from hospitals.
I'm restless. I'm tired. I'm worried. I'm burnt out.
It's mean to have you read this because you can't fix it. I can't fix it. I'm tired of trying to assure everyone that we're fine. We will be, but it's not fine with me to feel so helpless right now.
Tuesday, September 16, 2008
3rd Hospital Visit
We are preparing to return to the hospital tomorrow. I am driving all the carpools in duplicate today to try to make up for not driving anyone anywhere on Thursday & Friday. Jacob had school again today and will be off for the rest of the week. Today is also Cub Scouts. We might even try to cram Family Night into this evening's routine. I missed it yesterday because I was at Back to School Night, Michaels (to get our family photo custom framed - 60% off this week), & Target (to try to find more organizational tools for the bedrooms & closets. AND to make sure we have Oreos & pudding to make dirt cups).
I made salmon last night - a favorite of Jacob's. Today I'll bake pumpkin bread - a favorite of who-knows-who. But we all could use a little more antioxidants from the beta-carotene. I also intend to bake up some lasagna and/or meatloaf (where I plan to hide pumpkin seeds, flax, & oatmeal in the mix). I just trying to do normal stay-at-home mom things since I'll be at the hospital Wednesday night, Thursday all day, & Friday all day. I'm not an awesome stay-at-hospital mom. I guess I am for Jacob. He gets plenty of hovering and attention. I don't get much else done - including sleep. My others kids are scheduled to be in the caring hands of 7 friends plus at least three others driving my kids to and from school.
Thanks in advance to those who are helping here and afar.
I made salmon last night - a favorite of Jacob's. Today I'll bake pumpkin bread - a favorite of who-knows-who. But we all could use a little more antioxidants from the beta-carotene. I also intend to bake up some lasagna and/or meatloaf (where I plan to hide pumpkin seeds, flax, & oatmeal in the mix). I just trying to do normal stay-at-home mom things since I'll be at the hospital Wednesday night, Thursday all day, & Friday all day. I'm not an awesome stay-at-hospital mom. I guess I am for Jacob. He gets plenty of hovering and attention. I don't get much else done - including sleep. My others kids are scheduled to be in the caring hands of 7 friends plus at least three others driving my kids to and from school.
Thanks in advance to those who are helping here and afar.
Sunday, September 7, 2008
That Part I Hate the Most
Clinic visits are always long. There are too many other kids sitting with their worn out and worried parents. The staff is buzzing around the hive - overworked - misplacing charts, etc. First we have to get registered. This is a big open space - kind of like a trail head. After they collect the copay, I sign form and they print his paper work. Then the buzz us back to our doctor's corridor. It's kind of like an overcrowded alleyway. There must be about 10 chairs lined up, but usually it's standing room only.
Because we know that Jacob's port is going to be accessed we walk down to a little room on the right and ask for the numbing cream to be applied. It needs to sit for about 30 minutes so the area is actually numb. They squirt the cream on and then put a clear bandage covering thing on. We wait. Jacob usually plays the Nintendo DS. I haven't read more than 2 pages in my book. I can't concentrate. I read the same paragraph over and over.
I think I've figured out the paper trail. Once we've registered then they drop Jacob's file through the door to the nurses station. When it's his turn, they come down to the crowded hall and call us back. We go back with the nurse to take his vitals (weight, height, blood pressure, temperature). They ask if he has pain. We review any meds he is taking. Then we go back and wait in the crowded hall.
Eventually our papers are carried by the nurse down the hall to the little room on the right. We wait until our name is called again and then go to the other little room that is for patients. This is where they pull out their sterile kit. First they room the sticker over the numbing cream. The nurse wears gloves & a gown. They are supposed to clean the area with a special sterile wand thing with a cleaning sponge on the end. Then they poke a 3/4 inch needle that looks like a thumb tack into his chest, through the port accessing his central vein. They draw the blood needed for labs, flush the line, & tape up his port with this big clear sticker thing.
Then we wait to meet with the doctor. This could be over an hour as we wait for the counts to come back from the blood draws. Our name is eventually called and then we go back by the nurses station where his vitals were taken and into a patient room - There may be six of them. This is when we speak face to face with Dr. Matthias. She answers any questions, reviews the blood counts, discusses any further meds. Then she exams Jacob - checking the port, checking his scars, looking in his mouth, feeling his abdomen, etc. Then she writes the orders for the chemo.
So we wait again in the crowded hall while the chemo is prepared. After another long while, we are called back into the little procedure room for the chemo injection and also removal of the port needle.
This last week we had a chemo treatment AND a follow up visit with Dr. Chamberlin, our urologist. It was also a Wednesday after a holiday, so they had 54 scheduled patients instead of the usual 30. Because the nurse was trying to help us get to our other appointment, she called us back to meet with the doctor sooner - instead of waiting in the hall for the blood draw. Apparently the procedure nurses kept calling Jacob's name over and over so they could access his port.
Meanwhile we were waiting for Dr. Matthias when we were supposed to be upstairs for Dr. Chamberlin. I called up to let them know we'd be late. I don't know why I was in such a rush. By the time we got up there, we had to wait through the lunch break. But that appointment went well. Jacob officially has his clearance to ride a bike, play basketball, & to swim. (He still has to follow the oncologist's rules though). While we were gone, the chemo orders were supposed to be getting all ready, so we could return, draw blood, get chemo, and get the needle out all at once. (Instead of draw blood, see doctor, then get chemo, etc).
So, I'm finally getting to the point of this whole long post. It's bad enough that it's a day full of waiting. It's boring. It's kind of grim and gloomy. It's bad enough that he is there to get chemo. But the needle and receiving the drug into his veins is not too climatic. The part I hate the most about the whole ordeal is the STUPID TAPE.
Jacob must have very sensitive skin because he has had an irritation rash all around his port since his first hospital stay. Then it fades. Then after staying in the hospital for 4 days with the sticker badge over his port, it's all irritated again. I don't know whey you last stuck a big piece of tape to your chest and then tried to get it off, but it's horrible. While the sticky stuff is on, it tugges on Jacob's skin and really bothers him. So he starts hunching his left shoulder to protect it. It was my job to take the adhesive off that was covering the cream. Jacob was in full sobs. I felt horrible trying to take it off gently with adhesive remover. The nurse gave some suggestions for future visits - like not using the tape and just putting press and seal wrap over it. That could be a temporary fix when we are in clinic. I don't know what the answer is in the hospital - obviously we don't want to bump or pull the needle out.
So. Stupid Tape. Stop sticking to my boy when it's time to come off. So Stupid!!!
Because we know that Jacob's port is going to be accessed we walk down to a little room on the right and ask for the numbing cream to be applied. It needs to sit for about 30 minutes so the area is actually numb. They squirt the cream on and then put a clear bandage covering thing on. We wait. Jacob usually plays the Nintendo DS. I haven't read more than 2 pages in my book. I can't concentrate. I read the same paragraph over and over.
I think I've figured out the paper trail. Once we've registered then they drop Jacob's file through the door to the nurses station. When it's his turn, they come down to the crowded hall and call us back. We go back with the nurse to take his vitals (weight, height, blood pressure, temperature). They ask if he has pain. We review any meds he is taking. Then we go back and wait in the crowded hall.
Eventually our papers are carried by the nurse down the hall to the little room on the right. We wait until our name is called again and then go to the other little room that is for patients. This is where they pull out their sterile kit. First they room the sticker over the numbing cream. The nurse wears gloves & a gown. They are supposed to clean the area with a special sterile wand thing with a cleaning sponge on the end. Then they poke a 3/4 inch needle that looks like a thumb tack into his chest, through the port accessing his central vein. They draw the blood needed for labs, flush the line, & tape up his port with this big clear sticker thing.
Then we wait to meet with the doctor. This could be over an hour as we wait for the counts to come back from the blood draws. Our name is eventually called and then we go back by the nurses station where his vitals were taken and into a patient room - There may be six of them. This is when we speak face to face with Dr. Matthias. She answers any questions, reviews the blood counts, discusses any further meds. Then she exams Jacob - checking the port, checking his scars, looking in his mouth, feeling his abdomen, etc. Then she writes the orders for the chemo.
So we wait again in the crowded hall while the chemo is prepared. After another long while, we are called back into the little procedure room for the chemo injection and also removal of the port needle.
This last week we had a chemo treatment AND a follow up visit with Dr. Chamberlin, our urologist. It was also a Wednesday after a holiday, so they had 54 scheduled patients instead of the usual 30. Because the nurse was trying to help us get to our other appointment, she called us back to meet with the doctor sooner - instead of waiting in the hall for the blood draw. Apparently the procedure nurses kept calling Jacob's name over and over so they could access his port.
Meanwhile we were waiting for Dr. Matthias when we were supposed to be upstairs for Dr. Chamberlin. I called up to let them know we'd be late. I don't know why I was in such a rush. By the time we got up there, we had to wait through the lunch break. But that appointment went well. Jacob officially has his clearance to ride a bike, play basketball, & to swim. (He still has to follow the oncologist's rules though). While we were gone, the chemo orders were supposed to be getting all ready, so we could return, draw blood, get chemo, and get the needle out all at once. (Instead of draw blood, see doctor, then get chemo, etc).
So, I'm finally getting to the point of this whole long post. It's bad enough that it's a day full of waiting. It's boring. It's kind of grim and gloomy. It's bad enough that he is there to get chemo. But the needle and receiving the drug into his veins is not too climatic. The part I hate the most about the whole ordeal is the STUPID TAPE.
Jacob must have very sensitive skin because he has had an irritation rash all around his port since his first hospital stay. Then it fades. Then after staying in the hospital for 4 days with the sticker badge over his port, it's all irritated again. I don't know whey you last stuck a big piece of tape to your chest and then tried to get it off, but it's horrible. While the sticky stuff is on, it tugges on Jacob's skin and really bothers him. So he starts hunching his left shoulder to protect it. It was my job to take the adhesive off that was covering the cream. Jacob was in full sobs. I felt horrible trying to take it off gently with adhesive remover. The nurse gave some suggestions for future visits - like not using the tape and just putting press and seal wrap over it. That could be a temporary fix when we are in clinic. I don't know what the answer is in the hospital - obviously we don't want to bump or pull the needle out.
So. Stupid Tape. Stop sticking to my boy when it's time to come off. So Stupid!!!
The Best of People in the Worst of Times
Jacob made his first comeback to church since he started chemotherapy. We walked in just a minute after the meeting began. Our whole family walked up the aisle to the only available pew on the 2nd row. Jacob's albino head bobbled in contrast to his charcoal black suit. He was seemingly unaware of the many friends who glanced over to see that he was with us. I was a little emotional and choked up a bit while singing the hymn - such a simple thing - to have the whole family together at church.
It was fast and testimony meeting. My mind couldn't help but reflect on the many people who were and who have been fasting for our son and our needs. When the sharing of testimonies began, our home teacher got up. He comes to our home and tries to bring a message for the kids as well as for us. He smiled and ran his hand across his bald head. He expressed his love to all his home teaching families. His trip to the barber was his act to show support to "brother Jacob." He plans to keep his current hair style (or lack of hair style) until Jacob makes it through his trial.
We are pleased to know some of the nicest people EVER.
Did I mention that this home teacher used to be one of Jessica's nursery teachers?
Wednesday, September 3, 2008
Wednesday Again
This Wednesday (treatment day) came WAY too fast. We just got home and settled in on Saturday and now we are heading back to the clinic for chemo and to the urologist for a follow-up. Jacob is usually in denial on Wednesdays. It's not like he's excited to go.
Thankfully Jacob has some level of understanding. My friend that I met in the hospital who was there with her three year old also goes to the clinic on Wednesdays. Her little boy will say, "no chemo." He knows which room he has to go to be pinned down to access his port. He screams every week, even though he says it doesn't hurt. He doesn't like it. He clings to his older sister for comfort who can't be much older that 5 years old herself.
When you look around a packed infusion room (the room at the clinic where they dispense chemo treatments), it's unbelievable that so many children and so many families are living this life.
Thankfully Jacob has some level of understanding. My friend that I met in the hospital who was there with her three year old also goes to the clinic on Wednesdays. Her little boy will say, "no chemo." He knows which room he has to go to be pinned down to access his port. He screams every week, even though he says it doesn't hurt. He doesn't like it. He clings to his older sister for comfort who can't be much older that 5 years old herself.
When you look around a packed infusion room (the room at the clinic where they dispense chemo treatments), it's unbelievable that so many children and so many families are living this life.
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