Peter, a.k.a. Spider Man,
From the moment you came swinging into Simon's room on your spidey strings, you touched my mother heart. Thank you for the care you have given Simon, always mixed in with a touch (or more) of humor. You made us both laugh and brightened our evenings. You are the rock star among nurses, getting Simon his meds early enough to allow us both much needed sleep. Who needs super heroes when they've got such an awesome nurse?
Blessings to you,
Cheryl (a.k.a. Simon's mom)
Heath,
Words seem so inadequate. They cannot begin to express the gratitude I feel for the care you have given Simon. We met you for the first time on Simon's most difficult night on the BMT unit. The way you helped Simon through that night with his dignity in tact touched my heart. Your compassion and nursing skills blew me away. You truly have a gift for what you do. I am so thankful that you fell in love with patient care. Your heart for your patients is astounding. You went beyond highly skilled nursing and also brought laughter into this hospital room. I cannot remember a time when Simon laughed as much as he did that night you and Peter came in for pictures. He laughed almost as hard the next day when I showed him the pictures of you, Peter, and Ron in the family lounge. The sound of my child's laughter is music to my soul. Thank you for that gift! You will always be our #1 nurse.
Thank you for touching our lives! (And easing my heart and mind.)
P.S. I still think you should be a BMT nurse all the time!
"The kindest hearts expect no reward and deserve it all the more. You give so much of yourself in the kindness you show and the lives you touch. That's why you deserve a heartfelt 'thank you' and a wish that all the goodness you share comes back to you." (From the thank you card we got for Heath.)
A diary through the thoughts of a mother whose son was diagnosed with a critical illness.
Saturday, July 9, 2011
Our Hospital Home
For what it is worth, room 710, on the bone marrow transplant unit, has become home. Simon was admitted to the hospital on Memorial Day, waaay back in May. Today, Simon is 30 days out from transplant. It also marks our 41st day in our new "home."
The walls are decorated with posters of Star Wars and super heroes, as well as pictures from home. On one wall, is a large map of the USA, soon to be covered with foil stars, marking all the places across this great nation where people are praying for Simon.
Earlier this week, Peter, one of our all time favorite nurses, was all excited for us. Simon is doing well and heading towards discharge. He wrote on Simon's whiteboard, "Let's get started on discharge education." I smiled, grabbed my clothes, walked down the hall, and cried in the shower. (Peter is the one in red. We call him "Spider Man.")
What is wrong with me? After 40+ days in the hospital, you'd think I'd be bolting out the door a.s.a.p! I am anxious to be home, but we are still at least 2 and a half months away from there. When we leave here, "home" will be an apartment mere block away from the hospital.
We will be close enough for our daily trips back to the hospital. Close enough for daily doses of GCSF, granulocyte-colony stimulating factor. (This is needed to boost his white blood count, so he will have minimal protection against infection or illness.) Close enough for near daily platelet transfusions. Close enough for daily checks of his blood counts. And most importantly, we will be close enough to the emergency room for the middle of the night nose bleed that won't stop, or the dreaded fever that will put him right back in the hospital.
Bone marrow kids do not achieve freedom from this place easily. The doctor told us that most of these kids end up back in here at least once. One nurse told me she can't remember a patient who didn't end up back in here. Some kids come back for a few days until a fever goes away. Some end up back here for a month.
For what it is worth, this place is home. Once we leave, it becomes a hospital once more. If we come back, we are back to being in a hospital room. If we are lucky, we would be back on the bmt unit. If the unit is full, we could even end up on a different floor, surrounded by sick kids, without all the protections the bmt unit provides. Barren hospital walls without the comforts that surround us now. If we are going to come back anyways, I'd just as soon stay put.
Then there is the ever changing criteria for being able to leave in the first place. I have heard the magic ANC number of greater than 2500, 3 days in a row, followed by a couple of days without the GCSF. I have also heard the magic number of only greater than 1500 three days in a row. Two days ago, Simon hit above 1500 for the first time. Yesterday was his second day above 1500, but he was down from the day before. I am still waiting for today's numbers.
Either way, it doesn't sound like he has met the criteria for discharge just yet, at least to my untrained way of thinking. Given these circumstances, I'll take the safety of the hospital, thank you very much.
I don't even want to think about Simon's heart. He has been dealing with elevated blood pressures, which we know because his blood pressures are monitored around the clock. It hasn't been a huge issue, but he has been medicated about once a day for the past week. His heart rate was also up yesterday. Simon has the heart rate of an athlete, which means it beats around 50-55 beats per minute. At night, it even drops down into the upper 40s. Yesterday, every time it was checked, it was more in the 100-115 range. Not fast enough for anyone else to worry, but I am wondering why the change.
NEWS FLASH: Today's ANC just in. Trending down. 1700, 1500, 1300. Still waiting for the 3 days in a row of acceptable numbers to hit.
Then we have the fungus. Somewhere in Simon's body, there is a fungus called aspergillus. It has shown up in his blood. Its numbers are increasing. Simon gets to have cat scans, echo cardiograms, intense eye exams, and an MRI of his brain. They are looking for the fungus. So far, no signs of it having set up shop in any particular place. This is a good thing, but with those numbers rising, what does that mean? He is already on some really strong anti-fungal meds.
I am not yet ready to leave the safety of home, and more importantly, Simon's numbers do not indicate that he is either.
Tuesday, July 5, 2011
Ramblings.
This morning's CBC, complete blood count, brought great news. Simon's ANC doubled since yesterday morning. His ANC is now over 1000. (His low was 7.1.) His red blood is up slightly from yesterday, without having a transfusion, and he has held on to the platelets he received yesterday afternoon. Today he will have his day +28 bone marrow biopsy. (Technically, day +28 isn't until Thursday, but who's counting?)
The discharge word was used again today. Today marks our 37th day in the hospital. I should be ecstatic, right? Instead, I am going into full blown panic mode. (FYI: If you do your bawling in the shower, nobody will know.)
Discharge does not mean going home. It means moving into an apartment located 5 minutes from the hospital. Home is still 2.5 months away.
The hospital is a safe place. Simon's blood pressure, temperature, and oxygen levels are monitored throughout the day and night. His complete blood counts and kidney functions are checked daily. His platelets are checked twice a day. Blood transfusions are often given during the night, while we both sleep.
Discharge means the loss of those safety checks. If Simon's temperature spikes in the middle of the night, will I wake up? What about his blood pressure? Will we be making middle of the night trips to the hospital? Transfusions take up to 2 hours, plus the extra monitoring for an hour post transfusion. He has needed platelets every day and a half, and red blood every 2-3 days. What if he needs blood on the week-end? How will I even know?
In the hospital, meals are provided. Simon has no immune system. How will I be able to go to the store to buy food to feed us? I can't leave him alone, but I also can't take him out to where there are people.
Hospital days are really quite lazy. After discharge, will we be spending most of our time over at the hospital anyways? I am the one who does his dressing change on his broviac catheter every day, but the nurses do the flushing and changing of his caps.
Then there are the costs of leaving the hospital. Simon is taking 18-20 pills, twice a day. Mouth care meds are 3 time a day and nose spray is twice a day. I have lost track of how many meds he is still getting through the IV around the clock. Co-pays alone are going to run in the hundreds of dollars a month just for his meds.
The doctor told us that just about every transplant patient ends up back in the hospital at least once following transplant. Our room, for all it is, has become home. We have our things to make us comfortable. It is decorated with posters and pictures from home. When we have to return in an emergency situation, it will be to a strange room, and maybe even unknown nurses. (I shudder at THAT prospect.)
As I look ahead, the one thing guaranteed to bring tears to my eyes is the knowledge that we will be saying good-bye to the amazing people who have touched our lives during this time and entered our hearts.
Eleanor, who works in the cafeteria. She blesses me everyday when I walk through her checkout line. Ana and Dorothy, who have kept Simon's room sparkling. Most of all are the nurses. While some of our experiences with nurses have been a great source of anxiety for me, most of the nurses have been fantastic. Now that our time here is drawing to a close, we are finally getting some of the same nurses.
Tony, who brought in his Spider Man movies for Simon to watch.
Peter, otherwise known as Spider Man, who wears a different super-hero t-shirt every night. He came swinging in on his spider web one night and managed to get everything done, so Simon could be done for the night by 9! He was also Simon's nurse when Simon's ANC took its first real jump in the right direction. He won't be back on the BMT ward until next week. We might not see him again.
And then there is Heath. Heath is a float nurse, so the fact that we even met him is amazing. He earned himself a permanent place in our hearts his first night of working with Simon. It was Simon's roughest night here, and Heath handled him with such care and compassion, and managed to keep Simon's dignity in tact. When he wasn't in Simon's room that night, he was sitting right outside of it, with the monitor facing the window. He noticed the minute Simon's oxygen levels started to slip, and he was in the room getting Simon hooked up on oxygen. As a mom, I knew Simon was in very capable hands.
Heath was back on the floor a couple of nights later, but not as Simon's nurse. He did stop in and check on Simon a couple of times, just to see how he was doing. He wrote down a youtube video he wanted Simon to see. Last week, Simon had Heath for the second, and probably last time. As a float nurse, his duties are going to be more centered in the ER. We won't get to tell him good-bye.
If I don't stop now, I am going to be bawling again, so, yep, full, stinkin' blown panic.
The discharge word was used again today. Today marks our 37th day in the hospital. I should be ecstatic, right? Instead, I am going into full blown panic mode. (FYI: If you do your bawling in the shower, nobody will know.)
Discharge does not mean going home. It means moving into an apartment located 5 minutes from the hospital. Home is still 2.5 months away.
The hospital is a safe place. Simon's blood pressure, temperature, and oxygen levels are monitored throughout the day and night. His complete blood counts and kidney functions are checked daily. His platelets are checked twice a day. Blood transfusions are often given during the night, while we both sleep.
Discharge means the loss of those safety checks. If Simon's temperature spikes in the middle of the night, will I wake up? What about his blood pressure? Will we be making middle of the night trips to the hospital? Transfusions take up to 2 hours, plus the extra monitoring for an hour post transfusion. He has needed platelets every day and a half, and red blood every 2-3 days. What if he needs blood on the week-end? How will I even know?
In the hospital, meals are provided. Simon has no immune system. How will I be able to go to the store to buy food to feed us? I can't leave him alone, but I also can't take him out to where there are people.
Hospital days are really quite lazy. After discharge, will we be spending most of our time over at the hospital anyways? I am the one who does his dressing change on his broviac catheter every day, but the nurses do the flushing and changing of his caps.
Then there are the costs of leaving the hospital. Simon is taking 18-20 pills, twice a day. Mouth care meds are 3 time a day and nose spray is twice a day. I have lost track of how many meds he is still getting through the IV around the clock. Co-pays alone are going to run in the hundreds of dollars a month just for his meds.
The doctor told us that just about every transplant patient ends up back in the hospital at least once following transplant. Our room, for all it is, has become home. We have our things to make us comfortable. It is decorated with posters and pictures from home. When we have to return in an emergency situation, it will be to a strange room, and maybe even unknown nurses. (I shudder at THAT prospect.)
As I look ahead, the one thing guaranteed to bring tears to my eyes is the knowledge that we will be saying good-bye to the amazing people who have touched our lives during this time and entered our hearts.
Eleanor, who works in the cafeteria. She blesses me everyday when I walk through her checkout line. Ana and Dorothy, who have kept Simon's room sparkling. Most of all are the nurses. While some of our experiences with nurses have been a great source of anxiety for me, most of the nurses have been fantastic. Now that our time here is drawing to a close, we are finally getting some of the same nurses.
Tony, who brought in his Spider Man movies for Simon to watch.
Peter, otherwise known as Spider Man, who wears a different super-hero t-shirt every night. He came swinging in on his spider web one night and managed to get everything done, so Simon could be done for the night by 9! He was also Simon's nurse when Simon's ANC took its first real jump in the right direction. He won't be back on the BMT ward until next week. We might not see him again.
And then there is Heath. Heath is a float nurse, so the fact that we even met him is amazing. He earned himself a permanent place in our hearts his first night of working with Simon. It was Simon's roughest night here, and Heath handled him with such care and compassion, and managed to keep Simon's dignity in tact. When he wasn't in Simon's room that night, he was sitting right outside of it, with the monitor facing the window. He noticed the minute Simon's oxygen levels started to slip, and he was in the room getting Simon hooked up on oxygen. As a mom, I knew Simon was in very capable hands.
Heath was back on the floor a couple of nights later, but not as Simon's nurse. He did stop in and check on Simon a couple of times, just to see how he was doing. He wrote down a youtube video he wanted Simon to see. Last week, Simon had Heath for the second, and probably last time. As a float nurse, his duties are going to be more centered in the ER. We won't get to tell him good-bye.
If I don't stop now, I am going to be bawling again, so, yep, full, stinkin' blown panic.
Monday, June 27, 2011
Morning Workout.
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.
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.
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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