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September~11~2000
Hi there!
Everything is going great here!We have had some ups and downs since I last wrote but things are good!
We went to our last clinic appointment and Dr. Cowan decided he was going to do another engraftment study because the day after we got the good results of the last one,Jenna had a major dip in her white count.He assured us that it was no big deal he just wanted to be sure,so we were fine with that.We went home, camped at the beach for Labor day weekend and had a great time.Of course when it got to be about a week after they took the blood for the engraftment study,I wanted to know what the test results were, so I called them up and nobody had an answer for me,so I freaked out.I do it everytime we are waiting for results,I convince myself they aren't calling because they don't want to tell us the bad news and so on.I literally make myself sick.Well my Mom came over and got a hold of them and told them they needed to get those results to me NOW!!I wasn't sleeping,I was a real mess!Anyway they got them to us ASAP after my Mom called and they were great!No trace of Jennas marrow found,100% engraftment!Thank the good Lord above!I really have to learn how to relax about this kind of stuff.Other than that Jenna is doing amazing,she looks great,her hair is coming back,she is talking more everyday&she is very happy!
It is hard to explain to people what is going on with her,alot of people think that she is out of the woods because she has had a successful transplant.Unfortunately,it will be a very long time before we can kind of breathe easy and say "shew,that was a nightmare!"Jenna can lose her graft at anytime.There are still no guarantees.we are trying to teach ourselves not to think like that and just enjoy all of the positive things,but it is hard to keep your mind from wandering into what ifs.It is quite the rollercoaster ride,but I wouldn't get off for anything in the world!Our baby is happy and has no idea what she is up against,thats the blessing!
I added two more pages to Jennas page.Tyler Bales mommy Traci Bales wrote me and sent his page to me,he passed away 7 months ago,he was a darling little angel,and I thank her for sharing his story with us.
I also added Loren McClelland's page,he has just lost his second transplant,his family has been through it all, fighting for Lorens life,he is another adorable child who needs our extra prayer.
It amazes me that a year ago we had never even heard of Hurlers Syndrome,now we have met and read the heartbreaking stories of so many families who have been dealing with this devastating disease that is so rare but can happen to anyone.We have made friends in Sweden,Australia,Canada& all across the USA.Its like instant family,because these other families know exactally what you are going through.It is very helpful!
Okay I think I am done now;)
We hope everyone is well!
Take care!
love,
Kristi,Randy,Lindsay & Jenna Bean
