DAY+
118
August~7~2000
Hi guys!I have been trying like crazy to get in and do an update but something has been wrong with geocities and it wouldn't let me in.Oh well here I am now!
Jennas blood counts have remained up and steady,thank the Lord,its amazing what prayer can do.We really believe she has a guardian angel walking with her.Maybe it's one of our Grandparents or maybe its all of them,wouldn't that be neat?I often wonder about those things,maybe it is my cousin Angie who died of Leukemia when she was 15?Unfortunately this is not our family's first round with horriffic diseases,chemo therapy and bone marrow transplant.My cousin fought a good fight and in the end when her body and mind could take no more, she left.Now maybe she is helping to watch over our little angel?I keep thinking about what my Aunt Linda told me,that in the grand scheme of things this will all be a bad memory.She had to leave her other 6 children to be at the hospital with Angie, on and off for two years.This is so hard on a family,so far we feel extremely lucky and we just pray that Jenna will hold onto her graft.There are so many children out there who are going through second transplants,this has to be extremely difficult on their family as well as their little spirits.Shawna Perkins wrote and told me that one of the little boys in the unit while we were there, passed away.I am still trying to figure out which one he was.I just feel so sad for his family.
Okay i'll get back to Jenna,I guess I was rambling a bit.We went to clinic last Wednsday and they still see a little gvh rash but they are going to continue her steroid taper and watch and see how it goes.Her T-cell & B-cell study came back and she still does not have either,which they expected since she has been on high doses of steroids and she is still on cyclosporine.So of course that means we are no where near coming out of isolation,which we expected.They told us that it would be 6-9 months before that might happen and sometimes a year,so we were prepared for it.
We are still able to take her out for walks and she is very big on playing outside.The moment she gets up she grabs her hat and my shoes and trys to get me to put them on so we can go outside.
The doctors keep asking me,"so how does she seem to be feeling?"My only answer is that she is a maniac!She is go go go all the time.She is always happy,she never whines,she is amazing?If she falls and skins her knee,she gets up ,rubs it and keeps on going!Well at clinic Wednsday they told us we didn't need to come back for 1 month,so we were all excited, but...we were back the very next day!Jenna was sleeping on my lap and it was hot here so she only had on a diaper and I saw a drop of blood on her broviac so I looked closer and there was a hole in it,so we were on our way back to the treatment center at UC.They told me over the phone that we would need to hold her down so she didn't move while they repaired it,so Randy left work and went with us.Well we got there laid her down on the bed and she laid there and watched them cut and repair the whole thing without moving !she just smiled and talked to them.Well these nurses were extremely impressed so they went and searched their bag of toys and found her a really nice teddy bear.They said that most of the older kids wouldn't have sat so still and not complained!Can you tell I am very proud of my tough little cookie?
She has also been talking like a mag pie,she repeats everything we say,its great!
Ok well I am done bragging now!
One other thing before I sign off,I would just like to ask everyone to say an extra prayer for our little friend Lucas in Sweden.He is starting his transplant very soon,he is another Hurlers baby that is the same age as Jenna and Romie,they were all born in the beginning of January 1999.Good luck& God bless Leif,Caroline and Lucas,we will send many thoughts and prayers their way.
Take care!
Love,
Kristi,Randy,Lindsay & Jenna
Jenna and her good girl bear!