mariarlongview
Earning My Ears
- Joined
- Nov 14, 2008
- Messages
- 6
I guess we'll do introductions first, My name is Christina, I am happily married to my husband and we have 6 beautiful children. Maria is the oldest and the recipient of the make a wish. Then Angela 7, Natalia 6, Juanito 4, Moriah 2, and Isabel 9 months. And yes I know it is gonna be crazy taking all these kids to Disneyland. Maria has been ill for quite some time she was diagnosed at the age of 3 1/2 years old. Aplastic Anemia is a blood disorder that is basically bone marrow failure, and for those of us who forgot what we learn in biology, bone marrow makes blood. So a person with Aplastic Anemia can't make blood, any of the cells white, to fight infection, red, carries oxygen makes you tired, and platelets can't clot your blood. All extremely important things. Maria held her own until 2007 she became transfusion dependent. Which means she needed blood transfusions to survive. Now you can't live forever on blood transfusions, the more you have the more chance you have of reacting to them. And she did, She has had several anaphelatic reactions, meaning swelling, hives, throat and airway closing. Not pretty. So we needed to do transplant, looked into the marrow registry and of the millions of donors, no perfect match 
They found a partial match of cord blood donors. So in July of 2007 we went for the work up and decided to transplant in Seattle. In August she was admitted and transplant began. I know there are a lot of people out there who think that chemo and radiation is only for cancer, not true. I have faced so much discrimination and just plain niaveness due to the fact that its a blood disorder and its not thought of like cancer. But it is very much the same, even the way its treated. Oh right transplant, her transplant was on september 4 2007. The chemo and radiation kills your marrow and your immune system so you have to stay inpatient until your new marrow grows and you have some white cell count. After six long weeks of waiting, our worst nightmare the transplant didn't take. Now with flu and cold season upon us the docs want an alternative donor and fast. Daddy is chosen, you may ask why didn't they do dad first. Because our daughter is half me and half him, only a 50% match. Very risky, but we know if we wait death will be even more risky. No one can live without blood. So more chemo and radiation and october 30 2007, transplant number two. A couple weeks later we have counts!! It worked, but we also have an enemy. Graft vs Host Disease or gvhd daddy's cells think her cells are strangers and they attack her like they would a virus. so what does that do? for her it was her skin, like a sun burn blisters and all, gut, it stopped working, I know that may be hard for someone to grasp, food is not absorbed, a large pencil width tube was placed in her nose. I don't want to be too detailed but its not pretty. I'm gonna fast forward because the next several months weren't pretty at all. Long story short I almost lost my daughter. Not to aplastic anemia but to gvhd. 8 months later she was discharged, yes I said 8 months (one hospitalization) crazy huh? She had almost 300 transfusions. And now a year later she is transfusion dependent. Is she healthy? No, she is a shadow of the girl she used to be, but through all that she went through, she is still thoughtful and kind, truly my hero. Sorry that was sooo long, and really I made her history short!! Make a wish is sending the whole family to disneyland, that's where she picked, and she was quite sure cuz she made sure and said California!! Right now I know we'll be flying on Alaska airlines and we'll be going on jan 6 09 to jan 10 09 I will post more later
They found a partial match of cord blood donors. So in July of 2007 we went for the work up and decided to transplant in Seattle. In August she was admitted and transplant began. I know there are a lot of people out there who think that chemo and radiation is only for cancer, not true. I have faced so much discrimination and just plain niaveness due to the fact that its a blood disorder and its not thought of like cancer. But it is very much the same, even the way its treated. Oh right transplant, her transplant was on september 4 2007. The chemo and radiation kills your marrow and your immune system so you have to stay inpatient until your new marrow grows and you have some white cell count. After six long weeks of waiting, our worst nightmare the transplant didn't take. Now with flu and cold season upon us the docs want an alternative donor and fast. Daddy is chosen, you may ask why didn't they do dad first. Because our daughter is half me and half him, only a 50% match. Very risky, but we know if we wait death will be even more risky. No one can live without blood. So more chemo and radiation and october 30 2007, transplant number two. A couple weeks later we have counts!! It worked, but we also have an enemy. Graft vs Host Disease or gvhd daddy's cells think her cells are strangers and they attack her like they would a virus. so what does that do? for her it was her skin, like a sun burn blisters and all, gut, it stopped working, I know that may be hard for someone to grasp, food is not absorbed, a large pencil width tube was placed in her nose. I don't want to be too detailed but its not pretty. I'm gonna fast forward because the next several months weren't pretty at all. Long story short I almost lost my daughter. Not to aplastic anemia but to gvhd. 8 months later she was discharged, yes I said 8 months (one hospitalization) crazy huh? She had almost 300 transfusions. And now a year later she is transfusion dependent. Is she healthy? No, she is a shadow of the girl she used to be, but through all that she went through, she is still thoughtful and kind, truly my hero. Sorry that was sooo long, and really I made her history short!! Make a wish is sending the whole family to disneyland, that's where she picked, and she was quite sure cuz she made sure and said California!! Right now I know we'll be flying on Alaska airlines and we'll be going on jan 6 09 to jan 10 09 I will post more later
I know I don't know exactly what it's been like for you but I can relate a little bit to your hospital/doctor experiences as my DS3 has had many medical issues. I won't give you the whole story but he was born with a birth defect that caused him to have a lot of difficulty breathing and he eventually had to have a trach and a vent (which thankfully he has now been weened off of). He also had an NG tube for almost 2 years and now has a G-tube. There have been numerous surgeries and his longest hospital stay was 2.5 months which was awful so I can't imagine spending 8 months there! 
The people here are very friendly and helpful so feel free to post any questions you might have. Have fun reading the posts and finding out how to make your trip the best. I hope you and your family have a great trip and keep us posted on how your planning goes!
I am so sorry to hear of your family's hardship, welcome to the Dis 
