Who knew that getting a load of laundry in the machine would be such a workout? We are living on the planet of BMT, which is located on the 7th floor. There are no laundry facilities on this particular floor, so I can ride the elevator up to the 8th floor or down to the 6th floor when I can no longer avoid the task. The 6th floor machine has been out of order lately, so I went up this morning.
Low and behold, the 8th floor machine is out of order. Down to the 6th floor I go, and miraculously, the machine is not only working, it is also empty. After putting Simon's clothes in and starting the machine, I discover that the laundry soap containers are all empty. (I have run into this situation before, so I know what to do.)
Another ride on the elevator takes me back to the 8th floor, where I should be able to grab a cup full of soap. Now the rules have changed. Since the machine is broken, they have locked the door. I go out to the desk to inquire about soap. The oh so helpful, NOT, attendant walks to the door, which I said was locked, and attempts the handle. Maybe I can buy soap in the gift shop? (Did I mention that she wasn't very helpful?)
Down to the first floor, where the volunteer's office is located. I am in luck. They have soap. (Not the die-free, fragrance-free soap provided by THC that I am instructed to use on the machines, but it is soap.)
Back up the elevator to the 6th floor. Soap added to the machine. Back up to the 7th floor, through the double doors, hand washing station, second set of double doors, down the hall to Simon's room. Collapse in the chair for a few moments before I head back down to move the load to the dryer.
I'd say I have had my morning workout.
A diary through the thoughts of a mother whose son was diagnosed with a critical illness.
Monday, June 27, 2011
Wednesday, June 22, 2011
I'm Not Brave
Some kids don't make it. People keep saying how brave I am, but I am not even a little bit brave. As I was leaving the floor this evening to get some ice water, there was a mom in tears near the elevator. She had a large blue plastic bag in her hand. Jason, who works the desk, was talking to her. I caught bits of what he was saying. "Won't be there when you go home." "Are you talking to someone?" "Promise me you will talk to someone to help you through this." I'd love to tell myself that I misinterpreted what I witnessed, but I know the reality is that some kids lose the battle against cancer. Some parents have to go home with empty arms at the end of this journey.
I am one of the lucky ones. Simon was healthy enough to get to transplant. I am one of the lucky ones. Simon had bone marrow matches easily available to him. I am one of the lucky ones. Bone marrow transplant is a cure for the monster that has attacked his body.
Not all families up here have a future to look forward to. There is not a cure for all cancers. The reality is that 20% of kids who are lucky enough to get to transplant, still don't make it.
I am not brave. I will tell you who the brave ones are. These kids are the brave ones, first and foremost.
Reilly, who is12 years old and has been hit hard with all the effects of the chemo, is the brave one. From mouth sores that prevented her from eating for weeks, to the loss of her long hair. Her mom is brave. Reilly has fanconi anemia. The 2 other patients who have been transplanted for fanconi at this hospital, didn't make it. Even if this transplant is successful, there is a high probability that she will develope leukemia or another form of cancer down the road. Reilly and her mom are the brave ones.
Story is the brave one. Story is 2 years old, and this is her second transplant. Before the transplant, she was running up and down the hall chasing a ball and laughing. At only 2 years old, this is the life she knows. Hospitals and chemo and feeling sick. Story and her mom are the brave ones.
There are others whose journeys I do not know. They are the brave ones. Sometimes, kids don't make it. I am not brave.
I am one of the lucky ones. Simon was healthy enough to get to transplant. I am one of the lucky ones. Simon had bone marrow matches easily available to him. I am one of the lucky ones. Bone marrow transplant is a cure for the monster that has attacked his body.
Not all families up here have a future to look forward to. There is not a cure for all cancers. The reality is that 20% of kids who are lucky enough to get to transplant, still don't make it.
I am not brave. I will tell you who the brave ones are. These kids are the brave ones, first and foremost.
Reilly, who is12 years old and has been hit hard with all the effects of the chemo, is the brave one. From mouth sores that prevented her from eating for weeks, to the loss of her long hair. Her mom is brave. Reilly has fanconi anemia. The 2 other patients who have been transplanted for fanconi at this hospital, didn't make it. Even if this transplant is successful, there is a high probability that she will develope leukemia or another form of cancer down the road. Reilly and her mom are the brave ones.
Story is the brave one. Story is 2 years old, and this is her second transplant. Before the transplant, she was running up and down the hall chasing a ball and laughing. At only 2 years old, this is the life she knows. Hospitals and chemo and feeling sick. Story and her mom are the brave ones.
There are others whose journeys I do not know. They are the brave ones. Sometimes, kids don't make it. I am not brave.
Monday, June 13, 2011
Life on Another Planet
Okay, so the transplant ward isn't really another planet, but it sure feels like it at times.
First of all, life on this wing is an ocd person's dream come true. We are set apart from the rest of the world by 2 heavy doors. The air is specially filtered. The water is filtered. There are even special rules about how the ice is made and handled. The cleaning crew comes in twice a day. Daily showers are mandatory, as well as a complete bedding change.
Then there are the rituals required to enter and maintain life on this planet. Entrance to the planet is through a portal known as the BMT hand-washing station. Posted above the sink is a long list of entrance instructions. First, you must wash your hands for a full 30 seconds with a special soap. A clock hangs on the wall to help with this task. Hand washing complete, you must turn off the faucet without touching it with your hands. This is accomplished with your forearm or a paper towel. Next, you dry your hands completely with paper towels. The final step involves rubbing your hands with surgical scrub. (You would think that this process, performed a minimum of 3 times a day, would really dry out your hands, but mine have never been softer. I am getting some of that soap when we go home.) If you are bringing anything with you, special wipes are also provided at the station to wipe these things down.
Rituals do not end once you enter through the magic doors. For the patient, the day is full of rituals. The most time consuming ritual is the one of mouth care. First comes the brushing of the teeth. This is followed by 20 minutes of sucking on a troche. (Troche is another name for lozenge. Not sure why they don't just call it a lozenge. Must be an issue with the language translator.) When the troche is gone, there is a 20 minute wait period. The final stage is a special mouth wash which must be swished for 30-60 seconds before being spit out. This is followed by another 20 minutes of nothing to eat or drink. The mouth care ritual takes an hour to complete and must be performed 3 times a day.
We also have the ritual of the daily meds. Right now, this consists of 9 pills for Simon in the morning and another 8 pills in the evening. That isn't counting the meds he gets throughout the day through his central line. Blood transfusions have also become an almost daily occurrence. While these happen often, I hesitate to label them as rituals, since the do not occur at a set time of day.
This planet, the BMT ward, is very small. When we first arrived, the population was 5 patients, plus family members. It has grown to as high as 9 patients. Yesterday, 2 patients escaped. They were the first to leave since our arrival.
First of all, life on this wing is an ocd person's dream come true. We are set apart from the rest of the world by 2 heavy doors. The air is specially filtered. The water is filtered. There are even special rules about how the ice is made and handled. The cleaning crew comes in twice a day. Daily showers are mandatory, as well as a complete bedding change.
Then there are the rituals required to enter and maintain life on this planet. Entrance to the planet is through a portal known as the BMT hand-washing station. Posted above the sink is a long list of entrance instructions. First, you must wash your hands for a full 30 seconds with a special soap. A clock hangs on the wall to help with this task. Hand washing complete, you must turn off the faucet without touching it with your hands. This is accomplished with your forearm or a paper towel. Next, you dry your hands completely with paper towels. The final step involves rubbing your hands with surgical scrub. (You would think that this process, performed a minimum of 3 times a day, would really dry out your hands, but mine have never been softer. I am getting some of that soap when we go home.) If you are bringing anything with you, special wipes are also provided at the station to wipe these things down.
Rituals do not end once you enter through the magic doors. For the patient, the day is full of rituals. The most time consuming ritual is the one of mouth care. First comes the brushing of the teeth. This is followed by 20 minutes of sucking on a troche. (Troche is another name for lozenge. Not sure why they don't just call it a lozenge. Must be an issue with the language translator.) When the troche is gone, there is a 20 minute wait period. The final stage is a special mouth wash which must be swished for 30-60 seconds before being spit out. This is followed by another 20 minutes of nothing to eat or drink. The mouth care ritual takes an hour to complete and must be performed 3 times a day.
We also have the ritual of the daily meds. Right now, this consists of 9 pills for Simon in the morning and another 8 pills in the evening. That isn't counting the meds he gets throughout the day through his central line. Blood transfusions have also become an almost daily occurrence. While these happen often, I hesitate to label them as rituals, since the do not occur at a set time of day.
This planet, the BMT ward, is very small. When we first arrived, the population was 5 patients, plus family members. It has grown to as high as 9 patients. Yesterday, 2 patients escaped. They were the first to leave since our arrival.
Friday, June 3, 2011
New Direction on This Journey
In January, 2009, a month and a half before his 11th birthday, Simon was diagnosed with severe aplastic anemia, complete bone marrow failure. He responded well to immune suppression therapy. While he had a few set backs, it was thought that he would be the one to beat the odds and not need a bone marrow transplant.
In June of 2010, he was taken off his meds and continued to do well. In November of 2010, the doctor performed a routine bone marrow biopsy, thinking that in December we would be ready to have Simon's port removed.
While Simon's bone marrow continued to remain strong, some new complications had developed. A clone had appeared in one of the chromosomes. The clone leads to leukemia. In addition, PNH clones were detected in his blood samples. Rather than having his port removed, he would need to be monitored more frequently, and bone marrow transplant became likely.
Subsequent biopsies have not detected the chromosomal abnormality. However, the PNH clones have continued to increase.
Paroxysmal nocturnal hemoglobinuria, PNH, is the absence of a protein around the blood cells, causing the cells to break apart. The major risk in this disease is blood clots, which can be life threatening. The only cure is transplant. PNH is so rare, that few doctors have ever seen it. Simon's hematologist has never seen a case. The pediatric expert in the field of aplastic anemia, who Dr. Cook consults with on Simon, has only seen 2 other cases. Simon's transplant doctor, who has been doing this for 30 years, has seen it once before.
The process began. A search was initiated. Simon did not have a match in a family member. We were very fortunate to find many matches available to him through umbilical cord blood donations.
On Memorial Day, 2011, Simon checked into The Children's Hospital in Aurora, CO. The following day, his first chemotherapy drug was started. He has been receiving that every 6 hours, around the clock. He will receive his final dose at midnight. Tomorrow, he will begin a new drug that is very hard on the kidneys. To protect the kidneys, he will also be pumped full of fluids. He will also have to have a catheter with the new drug. He will receive that drug for 4 days.
On Sunday, he will start ATG to destroy any remaining t-cells. He had ATG therapy when he was first diagnosed. It is a brutal process, causing high fever, severe shakes, and hives. It is hoped that the chemo has already destroyed some of the t-cells, lessening the symptoms this time, but it will not be an easy process.
Day 0 will be Thursday, June 9. That is the day he receives the life giving stem cells. He will remain hospitalized for 4-6 weeks following transplant. It all depends on how long it takes for his new bone marrow to graft and begin producing new blood. When Simon leaves the hospital, he will have to remain in the Denver area for an additional 3-4 months. There is special housing near the hospital where we will be staying.
So far, Simon has had no ill effects from the current chemo. The doctor explained that it usually takes about a week for the effects of this particular medicine to be felt. He has been enjoying life as a couch potato, watching too much t.v. and playing video games. I will admit that it has been nice to be able to slow down and put my feet up for a bit. The views from our hospital room are breath taking.
In June of 2010, he was taken off his meds and continued to do well. In November of 2010, the doctor performed a routine bone marrow biopsy, thinking that in December we would be ready to have Simon's port removed.
While Simon's bone marrow continued to remain strong, some new complications had developed. A clone had appeared in one of the chromosomes. The clone leads to leukemia. In addition, PNH clones were detected in his blood samples. Rather than having his port removed, he would need to be monitored more frequently, and bone marrow transplant became likely.
Subsequent biopsies have not detected the chromosomal abnormality. However, the PNH clones have continued to increase.
Paroxysmal nocturnal hemoglobinuria, PNH, is the absence of a protein around the blood cells, causing the cells to break apart. The major risk in this disease is blood clots, which can be life threatening. The only cure is transplant. PNH is so rare, that few doctors have ever seen it. Simon's hematologist has never seen a case. The pediatric expert in the field of aplastic anemia, who Dr. Cook consults with on Simon, has only seen 2 other cases. Simon's transplant doctor, who has been doing this for 30 years, has seen it once before.
The process began. A search was initiated. Simon did not have a match in a family member. We were very fortunate to find many matches available to him through umbilical cord blood donations.
On Memorial Day, 2011, Simon checked into The Children's Hospital in Aurora, CO. The following day, his first chemotherapy drug was started. He has been receiving that every 6 hours, around the clock. He will receive his final dose at midnight. Tomorrow, he will begin a new drug that is very hard on the kidneys. To protect the kidneys, he will also be pumped full of fluids. He will also have to have a catheter with the new drug. He will receive that drug for 4 days.
On Sunday, he will start ATG to destroy any remaining t-cells. He had ATG therapy when he was first diagnosed. It is a brutal process, causing high fever, severe shakes, and hives. It is hoped that the chemo has already destroyed some of the t-cells, lessening the symptoms this time, but it will not be an easy process.
Day 0 will be Thursday, June 9. That is the day he receives the life giving stem cells. He will remain hospitalized for 4-6 weeks following transplant. It all depends on how long it takes for his new bone marrow to graft and begin producing new blood. When Simon leaves the hospital, he will have to remain in the Denver area for an additional 3-4 months. There is special housing near the hospital where we will be staying.
So far, Simon has had no ill effects from the current chemo. The doctor explained that it usually takes about a week for the effects of this particular medicine to be felt. He has been enjoying life as a couch potato, watching too much t.v. and playing video games. I will admit that it has been nice to be able to slow down and put my feet up for a bit. The views from our hospital room are breath taking.
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