angel's momma
DIS Veteran
- Joined
- Jan 8, 2004
Hi 
Our little family consists of me, Christi, my wonderful husband Tom, and our 14 year old daughter Angel. Angel isn't the "typical" teenage girl - she much prefers listening to Disney music rather than Pop, etc., and watching Disney Channel or Disney movies rather than the typical teen fare.
A year ago, life was "normal", and we were tentatively planning a return trip to wdw in May.
As winter progressed, we were amazed that Angel hadn't even been sick - normally she missed at least a few days of school because of something going around. She was excited that first semester ended, and she still had perfect attendance - for the first time ever.
Little did we know that she was actually the "sickest" she had ever been, and our world was about to be turned upside down.
Looking back, there were signs, but they were subtle. Admittedly, our family tends not to go to a Dr. unless absolutely necessary, but everything seemed like typical teenage behavior, and not anything that indicated that she needed to see a Dr. Her lips were very chapped, to the point they would bleed, but it was winter, and she has a bad habit of licking her lips, so we were telling her to use more lip balm, and stop licking. She had a very bad case of razor burn after shaving her legs, but it was obvious that she hadn't changed the blades for awhile. She was sleeping more than usual - but that isn't unusual for teens, and she was also "unusual" in that she rarely ever slept in, so "more" for her was still less than many other teens.
One day in late Jan. she came home from school & said she had been playing dodgeball in PE, and hit her knee on the gym floor. Her knee had a huge, dark bruise on it, but she said it didn't really hurt much. That was a Wed., and the following Mon. she came home from school and said I needed to look at her eye, cause everyone told her it looked red. I wasn't happy that the teachers who had seen it just accepted Angel's reply that maybe it was her seasonal allergies. I thought it may be pink eye, but it was too late to see our PCP, so it was off to "prompt care", where we spent 3 hours before being told there was no way to know for sure if it was pink eye, but it needed to be treated as such, so she couldn't go to school the next day, but could return after that if it was better.
Angel had been having some issues with her jaw (unrelated to her final diagnosis), but it wasn't too bad, and she hadn't wanted to miss school to go to the Dr. Since she had to miss school anyway, we decided to call & see if she could be seen. I really didn't expect to get in at such short notice, but they did have an opening. Since the Dr. was going to look in her mouth, she brushed her teeth really well. She came & told me her gums were bleeding. She said she did brush a lot, so I told her she needed to be more careful (I must be sounding like such a nagging mom). About an hour later, she said they were still bleeding. Now I'm concerned. We live in a tiny rural community, so it was time to leave for the Dr. anyway. When we finally see the Dr., her gums are still bleeding, and it's been 2 hours since she brushed. While we were waiting for the Dr. to come in to the exam room, I asked her to show me the bruise on her knee. It hadn't changed much since it happened, and I found a few other minor bruises on her arms & legs, but she inherited my clumsiness, and it wasn't unusual for her to bump into things. Bleeding & bruising -leukemia immediately came to my mind, but I really didn't give it much thought - she was seemingly healthy, maybe it was a vitamin deficiency. Dr. ran some bloodwork, and said we'd get the results the next day, so we ran some errands & went home.
It was about 3 hours after we had left the Dr's office, when I was surprised to get a call from the Dr. himself. He said the results were back, and Angel's platelets were practically non-existent, they suspected leukemia, and we needed to take her to the Children's Hospital an hour away to get a transfusion immediately.
Once there, we were told that Angel's platelets had been 5000, and had dropped further to 1000. Normal is at least 150,000. Her ANC, which indicates how well the immune system is working, was 40, and should be at least 2300. Tests were conclusive that it was not leukemia. We were relieved, until we learned that what she has is just as serious - severe aplastic anemia, a very rare, life threatening, bone marrow disorder that they believe is caused when part of the immune system attacks the bone marrow for no known reason, resulting in the bone marrow not being able to produce cells. Those cells are responsible for blood production, platelets (blood won't clot without, which is why her gums were bleeding, her "pink eye" was actually just burst vessels from rubbing her eye, and the "razor burn" was actually tiny little bruises from the pressure of shaving), and the immune system. Hemoglobin & platelets can be transfused, but the cells for the immune system cannot be.
The only real "cure" is a bone marrow transplant, and the most successful transplants occur with a sibling donor. Angel is an only child. There are over 16 million potential bone marrow donors on the registry, but none are a match for Angel. I highly encourage everyone to consider joining the registry - all it takes is a mouth swab.
Sometimes a immunosuppressant treatment can prompt the marrow into a recovery mode. Angel received that treatment in Feb., as well as having a broviac line surgically placed to so she wouldn't have to be poked for every lab or transfusion. It was 25 days before she was discharged from her initial admission. By that time, her ANC was 0, and she was receiving multiple transfusions every week just to keep her hemoglobin & platelets above 7 and 10,000.
Before her discharge, we were told that the location of our home was a huge risk of a fungal infection, which had to be avoided at all cost. We lived across the street from a grain elevator, and railroad tracks. Before we could take her home, we had to arrange for temporary housing. We lived there 3 months before finding a house to buy, which was much smaller than our previous home, which meant my sweet little packrat had to give up many of her belongings, which was very hard on her on top of everything else she was going through. She also took it very hard that she couldn't "say goodbye" to our previous home, where we had lived since before she was born.
She was "home" at the temporary house, but couldn't go anywhere at all except for clinic 3 times a week. She was heartbroken that she couldn't return to school, church, swimming, etc. She had many other restrictions as well, including diet, having to wear a mask, not being able to interact with her gerbils (we had to beg & plead to even be able to keep them), no visitors, and lots of meds. She wasn't exactly "happy", but she did handle it much better than anyone would expect.
Being "home" lasted less than a week, and then came weeks of being in & out of the hospital for fevers. 100.4 means a minimum stay of at least 48 hrs., because having a low immune system is so risky. No infection was ever found, but it was a very frustrating time, with many admissions.
In May, her ANC reached normal levels, and we were very excited. She was still needing several transfusions every week though. She had been receiving a daily shot, and that was stopped with the normal ANC. Her ANC immediately plummeted, which was very discouraging. However, she "coincidently" became transfusion independent, so they did not restart the shots. Since then, she has remained transfusion independent, but her ANC has bounced all around, and is very rarely over 1000, so her ATG treatment is not considered to have been successful. We are hopeful that a bone marrow donor match will be found. Until then, we keep monitoring her counts, and hope that they don't fall.
Her Dr. decided that she could return to school when it started in Aug. - not because she was well, but because it meant so much to her, and since a transplant isn't imminent it's best for her to try to be as "normal" as she can. There are many special precautions she has to take to be able to go.
3 days before school started, she started getting extremely dizzy. It took many tests, and several admissions, to determine that she had had a toxic reaction to her immunosuppresant med. She was taken off all meds, and we were told that all of her levels would probably drop back to when she was initially admitted. Fortunately, that did not happen, and since it didn't, they decided to keep her off the meds "to see what happens" - which is pretty scary.
Her hemoglobin & platelets actually started to go up! Her hemoglobin is now back at a normal level, but her platelets are still well below normal. Her ANC is still very low, but at least it is over 1000 more frequently (she has less restrictions when it's over 1000). It's still low enough that all of the colds & other bugs going around are very scary. We were told that it was a very good thing that the flu season hit late last winter, and that they were pretty much amazed that she didn't catch something before she was diagnosed, which would have resulted in things being much worse.
Last month she developed some other issues - difficulty walking, headaches that are constant & last for weeks, and the dizziness returned. Extensive testing show no cause for any of it. The walking is back to normal, the dizziness gone again, but she's been dealing with the headaches for 3 weeks now. All of this means that she has been able to attend very few days of school, which she had been looking so forward to.
Which brings us to her Make a Wish. At her first clinic appt. the end of Feb., we were told that she would qualify for a wish, and they would submit her name, but it would take quite a while. While we knew that her condition was life threatening, we thought MAW was when the illness had reached a terminal level. Angel was very excited to find out that she would be able to ask for a wish, and knew immediately what it would be - a Disney Cruise. She has wanted to go on one since she first saw the commercials when she was 4, but it was never in our budget. We have been very fortunate to be able to visit wdw several times, but that was due to very good promotions (which I learned about from the wonderful DIS boards
). She had a lot of time on her hands this summer, cooped up at home, while my husband & I made all of the preparations to the new house (lots of special things needed to be done before she could even go in the house), so she did lots of research on DCL. 2 weeks ago, some other families at clinic were talking about their wishes, and asked us about Angel's. When we said we hadn't started the process, they were very surprised, and said we should ask the new Child Life Specialist. We were hesitant, because we had been told it would take a long time, but we decided to ask. She was very surprised too, worried that the person in Feb. hadn't submitted the paperwork, and concerned that now it may have been too long since diagnosis. She looked into it, found out it had never been submitted, and said that someone would call us to determine if she still quailified. We received the call this week to confirm that they will grant her a wish. 
Her wish granters are supposed to contact us within a couple of weeks.
We've often been sad this year that we weren't able to go to wdw in May as we were tentatively planning a year ago, but now we are excited to be tentatively planning a Disney cruise. It may be a while before she's well enough to actually go, but being able to plan is very exciting. She's not much of a pirate fan, but she was very excited to find a pirate gown on clearance the day after Halloween, and it's now packed away in anticipation of being able to wear it to the cruise pirate party.
If you've made it this far - thank you When I started this post, I had no idea it was going to be so long. 
Our little family consists of me, Christi, my wonderful husband Tom, and our 14 year old daughter Angel. Angel isn't the "typical" teenage girl - she much prefers listening to Disney music rather than Pop, etc., and watching Disney Channel or Disney movies rather than the typical teen fare. A year ago, life was "normal", and we were tentatively planning a return trip to wdw in May.
As winter progressed, we were amazed that Angel hadn't even been sick - normally she missed at least a few days of school because of something going around. She was excited that first semester ended, and she still had perfect attendance - for the first time ever.
Little did we know that she was actually the "sickest" she had ever been, and our world was about to be turned upside down.
Looking back, there were signs, but they were subtle. Admittedly, our family tends not to go to a Dr. unless absolutely necessary, but everything seemed like typical teenage behavior, and not anything that indicated that she needed to see a Dr. Her lips were very chapped, to the point they would bleed, but it was winter, and she has a bad habit of licking her lips, so we were telling her to use more lip balm, and stop licking. She had a very bad case of razor burn after shaving her legs, but it was obvious that she hadn't changed the blades for awhile. She was sleeping more than usual - but that isn't unusual for teens, and she was also "unusual" in that she rarely ever slept in, so "more" for her was still less than many other teens.
One day in late Jan. she came home from school & said she had been playing dodgeball in PE, and hit her knee on the gym floor. Her knee had a huge, dark bruise on it, but she said it didn't really hurt much. That was a Wed., and the following Mon. she came home from school and said I needed to look at her eye, cause everyone told her it looked red. I wasn't happy that the teachers who had seen it just accepted Angel's reply that maybe it was her seasonal allergies. I thought it may be pink eye, but it was too late to see our PCP, so it was off to "prompt care", where we spent 3 hours before being told there was no way to know for sure if it was pink eye, but it needed to be treated as such, so she couldn't go to school the next day, but could return after that if it was better.
Angel had been having some issues with her jaw (unrelated to her final diagnosis), but it wasn't too bad, and she hadn't wanted to miss school to go to the Dr. Since she had to miss school anyway, we decided to call & see if she could be seen. I really didn't expect to get in at such short notice, but they did have an opening. Since the Dr. was going to look in her mouth, she brushed her teeth really well. She came & told me her gums were bleeding. She said she did brush a lot, so I told her she needed to be more careful (I must be sounding like such a nagging mom). About an hour later, she said they were still bleeding. Now I'm concerned. We live in a tiny rural community, so it was time to leave for the Dr. anyway. When we finally see the Dr., her gums are still bleeding, and it's been 2 hours since she brushed. While we were waiting for the Dr. to come in to the exam room, I asked her to show me the bruise on her knee. It hadn't changed much since it happened, and I found a few other minor bruises on her arms & legs, but she inherited my clumsiness, and it wasn't unusual for her to bump into things. Bleeding & bruising -leukemia immediately came to my mind, but I really didn't give it much thought - she was seemingly healthy, maybe it was a vitamin deficiency. Dr. ran some bloodwork, and said we'd get the results the next day, so we ran some errands & went home.
It was about 3 hours after we had left the Dr's office, when I was surprised to get a call from the Dr. himself. He said the results were back, and Angel's platelets were practically non-existent, they suspected leukemia, and we needed to take her to the Children's Hospital an hour away to get a transfusion immediately.
Once there, we were told that Angel's platelets had been 5000, and had dropped further to 1000. Normal is at least 150,000. Her ANC, which indicates how well the immune system is working, was 40, and should be at least 2300. Tests were conclusive that it was not leukemia. We were relieved, until we learned that what she has is just as serious - severe aplastic anemia, a very rare, life threatening, bone marrow disorder that they believe is caused when part of the immune system attacks the bone marrow for no known reason, resulting in the bone marrow not being able to produce cells. Those cells are responsible for blood production, platelets (blood won't clot without, which is why her gums were bleeding, her "pink eye" was actually just burst vessels from rubbing her eye, and the "razor burn" was actually tiny little bruises from the pressure of shaving), and the immune system. Hemoglobin & platelets can be transfused, but the cells for the immune system cannot be.
The only real "cure" is a bone marrow transplant, and the most successful transplants occur with a sibling donor. Angel is an only child. There are over 16 million potential bone marrow donors on the registry, but none are a match for Angel. I highly encourage everyone to consider joining the registry - all it takes is a mouth swab.
Sometimes a immunosuppressant treatment can prompt the marrow into a recovery mode. Angel received that treatment in Feb., as well as having a broviac line surgically placed to so she wouldn't have to be poked for every lab or transfusion. It was 25 days before she was discharged from her initial admission. By that time, her ANC was 0, and she was receiving multiple transfusions every week just to keep her hemoglobin & platelets above 7 and 10,000.
Before her discharge, we were told that the location of our home was a huge risk of a fungal infection, which had to be avoided at all cost. We lived across the street from a grain elevator, and railroad tracks. Before we could take her home, we had to arrange for temporary housing. We lived there 3 months before finding a house to buy, which was much smaller than our previous home, which meant my sweet little packrat had to give up many of her belongings, which was very hard on her on top of everything else she was going through. She also took it very hard that she couldn't "say goodbye" to our previous home, where we had lived since before she was born.
She was "home" at the temporary house, but couldn't go anywhere at all except for clinic 3 times a week. She was heartbroken that she couldn't return to school, church, swimming, etc. She had many other restrictions as well, including diet, having to wear a mask, not being able to interact with her gerbils (we had to beg & plead to even be able to keep them), no visitors, and lots of meds. She wasn't exactly "happy", but she did handle it much better than anyone would expect.
Being "home" lasted less than a week, and then came weeks of being in & out of the hospital for fevers. 100.4 means a minimum stay of at least 48 hrs., because having a low immune system is so risky. No infection was ever found, but it was a very frustrating time, with many admissions.
In May, her ANC reached normal levels, and we were very excited. She was still needing several transfusions every week though. She had been receiving a daily shot, and that was stopped with the normal ANC. Her ANC immediately plummeted, which was very discouraging. However, she "coincidently" became transfusion independent, so they did not restart the shots. Since then, she has remained transfusion independent, but her ANC has bounced all around, and is very rarely over 1000, so her ATG treatment is not considered to have been successful. We are hopeful that a bone marrow donor match will be found. Until then, we keep monitoring her counts, and hope that they don't fall.
Her Dr. decided that she could return to school when it started in Aug. - not because she was well, but because it meant so much to her, and since a transplant isn't imminent it's best for her to try to be as "normal" as she can. There are many special precautions she has to take to be able to go.
3 days before school started, she started getting extremely dizzy. It took many tests, and several admissions, to determine that she had had a toxic reaction to her immunosuppresant med. She was taken off all meds, and we were told that all of her levels would probably drop back to when she was initially admitted. Fortunately, that did not happen, and since it didn't, they decided to keep her off the meds "to see what happens" - which is pretty scary.
Her hemoglobin & platelets actually started to go up! Her hemoglobin is now back at a normal level, but her platelets are still well below normal. Her ANC is still very low, but at least it is over 1000 more frequently (she has less restrictions when it's over 1000). It's still low enough that all of the colds & other bugs going around are very scary. We were told that it was a very good thing that the flu season hit late last winter, and that they were pretty much amazed that she didn't catch something before she was diagnosed, which would have resulted in things being much worse.
Last month she developed some other issues - difficulty walking, headaches that are constant & last for weeks, and the dizziness returned. Extensive testing show no cause for any of it. The walking is back to normal, the dizziness gone again, but she's been dealing with the headaches for 3 weeks now. All of this means that she has been able to attend very few days of school, which she had been looking so forward to.
Which brings us to her Make a Wish. At her first clinic appt. the end of Feb., we were told that she would qualify for a wish, and they would submit her name, but it would take quite a while. While we knew that her condition was life threatening, we thought MAW was when the illness had reached a terminal level. Angel was very excited to find out that she would be able to ask for a wish, and knew immediately what it would be - a Disney Cruise. She has wanted to go on one since she first saw the commercials when she was 4, but it was never in our budget. We have been very fortunate to be able to visit wdw several times, but that was due to very good promotions (which I learned about from the wonderful DIS boards
). She had a lot of time on her hands this summer, cooped up at home, while my husband & I made all of the preparations to the new house (lots of special things needed to be done before she could even go in the house), so she did lots of research on DCL. 2 weeks ago, some other families at clinic were talking about their wishes, and asked us about Angel's. When we said we hadn't started the process, they were very surprised, and said we should ask the new Child Life Specialist. We were hesitant, because we had been told it would take a long time, but we decided to ask. She was very surprised too, worried that the person in Feb. hadn't submitted the paperwork, and concerned that now it may have been too long since diagnosis. She looked into it, found out it had never been submitted, and said that someone would call us to determine if she still quailified. We received the call this week to confirm that they will grant her a wish. Her wish granters are supposed to contact us within a couple of weeks.We've often been sad this year that we weren't able to go to wdw in May as we were tentatively planning a year ago, but now we are excited to be tentatively planning a Disney cruise. It may be a while before she's well enough to actually go, but being able to plan is very exciting. She's not much of a pirate fan, but she was very excited to find a pirate gown on clearance the day after Halloween, and it's now packed away in anticipation of being able to wear it to the cruise pirate party.
If you've made it this far - thank you
When I started this post, I had no idea it was going to be so long. 
Cruise Crtic has some good info on cruises. I have learned a lot of inside info by researching. But I tend to have that problem! 
Both times we have done cruises were in May, we actually went over Memorial Day this year that way the boys were done with school. I didn't really give any specific days other than a couple weeks in Jan that a co-worker will be gone. I figure whenever! Just hoping not over college spring break!
I am so sorry Angel has qualified for a wish 
; however, I am excited she will get to have a wonderful cruise. 
- I know how busy you are. It's always nice to find girls with similar tastes as Angel - she doesn't exactly "fit in" with most teen girls. I'm looking forward to reading your PTR & TR, been busy trying to catch up on all of the current PTRs first. I did watch the reveal video - absolutely beautiful!
