Wow this is great that thay made a form for Leukiema, for of all my name is Valerie and my youngest son Bailey has ALL, he wah dicnosed in march of 2006.and is doning very well..I just wanted to intrduse my self and i would love to here from others...
Hi Valerie (mother of bailey). My name is Laura, and my father was diagnoised with CLL three years ago a day before Christmas. We have been told if you are going to have cancer that is the cancer to have. So far he hasn't had to do anything different besides getting his blood levels checked. His father died of ALL two years ago. My husband and I have a big garden in the back yard full of different types of tomatoes just for my dad. His doc said that he is lucky because his blood levels have actually gone down a little. We think it is due to the fact he eats lots of tomatoes and lots and lots of blackberries and blueberries and takes his vitamins that the doc told him to take. My father is young compared to the people that get CLL. He is now 60 (which isn't young I guess).
I'm 29 and have two little girls and am happily married. One good thing that we did was when we had our two year old we banked her cord blood because my husband has the same rare blood type of my father AB-, don't know if it will help but we have the option at least. So how is your son doing?
Hi laura im glad to here frome u..My son is doning good right now..he takes cemo at home everynight and 1 a month he goes to Riley Chrilderns Hosrital for a big cemo trentment..Hes a strong little boy...It is great that ur dad is doning so well..dose he have to have cemo at all? im also 29 im marred to a wonderful man, and we have 4 boys, the youngest bailey who is 5...i wish we would of had aa ihe info on banking core blood back when baailey was born it would of realey helped..my little sis is haveing her first baby in dec and she is goning to donate hafe of hers and bank the rest..Hope everything is goning ok foe u and ur familey...God Bless!!!! Valerie
Our nephew was at Rileys Children hospital in Indianapolis for two months. He was diagnoised with SMA type 1. They just brought him home 2 weeks ago. It really sad because they couldn't have children and had waited 10 years and finally found someone, and now their little boy probably isn't going to make it past 2 years old.
My father hasn't had to do any cemo yet, they just watch his white cell count and make sure it isn't getting to high. You wouldn't know anything is wrong with him if you looked at him. There really isn't anything the docs can do for him until he gets sicker, and then the docs say only thing they can do is cemo to help keep him alive as long as possible. There is no cure though. The life span for CLL is usually abou 13 years. He still works full-time, and his CLL is a big secret because he doesn't want to loose his job. The only time we can tell he has cancer is he gets tired a lot easier and faster now then before, and he also picks up colds all the time where as he use to never get sick.
You littlest is the age of my 5 year old daughter. I also have a 2.5 year old little girl. Your family sounds like my family growing up. I was the only girl of four brothers. Two older brothers and two younger. Well protected.
How did you discover that your son was sick?
My father was going to have surgery and had the blood work done a week before Christmas three years ago, and the day before Christmas they called and said he had cancer.
Bailey my son was starting to get thes little red dots about the size of a pin tip and flat all over his body, we made him a dr apt and had to waite 4 days to see the dr by the time he was seen he also had bruseing all over his body,we found out 2 hours after he got blood test,I was at home doning dishes the boys were all in there room playing it was spring brake the dr called and told me he had cancer and we needed to leave right away to go to riley,we live about 2 hours away from indy..I know in my hart something was realey bad wrong with bailey but when the dr told me i just lost it..i couldent rember my hubbys work # or my parents ...by the time we got to the hospital thay i was out of my mind..any way his himgloben was onley 4.5 its normal at 10 and thay give people blood at 7 so he was way down there, we were luckey we found out then becuse he could have had lot more problems if he had a bleed some were...any way sorry for rambling...Im very sorry about ur nephew its so sad what some chrildern have to go through, and parents if u dont mind ill pray for them....valerie
Oh yes please do pray for him. If you get on the caring bridge site where you can write things to kids in the hospital, his name is John Marshall Wyatt.
I know he has to go back up to Indy in a couple of weeks.
He has had it hard. While at Rileys his lung collapsed, he is now on a feeding tube and on Bib cap machine at night to build his lungs up. He also has to be suctioned. He won't ever even be able to hold his head up. He is about 11 months old now and can't do anything. He did just start saying dada though. That is more then they thought he would do. So maybe he might get better. They aren't sure if it is SMA type 1 or SMA type 2?
I will sure keep your son in our prayers, if you don't mind me asking what type of blood does he have. I was just wondering because if I could be of any help please let me know because I am in Indiana also.
Bailey is o+, he also has a careing bridge site Bailey Smith, i havent updated in awile though...Riley is a good hospital thay have been good to us..as in always awansering all our ? and just bening realey good to our son....That poor baby this has to be so hard for ur sisterand brother he will def be in my prayers and ill look up his site.....valerie
I signed your sons site. He is such a cutie pie. How are you doing? I am sure it must be really hard on you. Rileys is such a nice place for families. Very hard to find though. The first time we went up there my husband and I were looking for something that said Rileys I didn't realize it was IUPUI that we had to look for. Took us an extra hour to find it.
Yes it is a very hard place to find, we were so frstrated that first time....I dont know meny women like us that stay home anymore its nice to know someone else dose to..most people think it is so easy to stay home...we know better though dont we...i about to turn the big 30 in nov *sigh* not goning to be fun...yes it good to have someone my age to talk to..my myspace id myspace/vjsmitty if u want to go ther and look at some of my pic......Valerie
okay I will get on myspace. i will send you a friends invite because my profile is on private.
i'm younger hahahaha my bday is in Dec.
Staying home is hard work, I think one of the hardest things is you loose so much interaction with the outside world. I use to be so jealous of my husband because he would come home and talk about his friends at work. I got use to it a couple of years ago though. Mattie just started kindergaten and I thought it would be easier now.... Wrong! Now I have to entertain Audrie all the time cause her sister isn't here.
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