Update on my son ie (18 year old)

[Guest guest]

I want to start by saying a big thank you to all of you. The

support here has been awesome. I received such compassionate and

caring messages, private emails and prayers and support and I was

very moved by the words and support I got so I thank you all from

the bottom of my heart for that. I hope to someday give someone the

support you all gave me. I'm sorry it's taken so long to update but

it's been such a busy week so far. On Monday we met with Dr. Neil

Shah who was absolutely wonderful. He talked and we listened and it

was all so overwhelming and so much to absorb at once, I'm glad I

have an audio recording I've listened to his words several times now

since Monday. ie had his bone marrow biopsy/aspiration on

Tuesday morning, we're not wasting any time, especially since he's

starting at UC Berkeley next Monday. We hope to hear Chronic/stage1

within a week or so and all my prayers have now been consumed with

wanting to hear the words chronic not accelerated an not blast

phase. Dr. Shah was pretty confident but not certain that ie

is in the chronic stage. The bone marrow procedure was awful. I

don't even have the words to describe the pain and tears that were

flowing, I maintained my composure and didn't outright sob while

holding my son's hand but my tears flowed with his but I think mine

flowed stronger and faster. He was in a lot of pain and nothing

could prepare me for witnessing that procedure and the thought that

he has to go through that every six months or so is distressing but

we'll do whatever it takes to get him better. I'm not a scared as

last Friday but I'm still frightened as hell. I think I'm

definitely feeling a little stronger though. All your stories and

support were very helpful, many thanks to each and every one of

you. I pray that Gleevac will work for him. They advised us that

we should immediately start banking some of his sperm just in case,

that's been heavy on my mind and today I got an appointment set up

for him for Friday so they can begin that process. I wish more than

anything that we didn't have to travel this road but I don't ever

want him or I to have regrets on that decision and I want him to

someday be able to experience the joy that a child brings to your

life and if by doing this it may someday help him than I will move

mountains and figure out how we're going to pay for it. I've been

so financially strapped since paying for his tuition and first year

college expenses, laptops, frig, etc. etc. but somehow I'm praying

that the Lord will help me find a way to fund the banking of his

sperm. He's on board 100%, he heard and understood completely

everything Dr. Shah said to us. They typed him for the bone marrow

registry and they are getting approval to type my daughter to see if

she is a match just in case. I'm so afraid and know that there is a

greater chance that she is not a match for him than there is a

chance that she is but I'm trying to hold out hope on that, maybe

something will go right I pray. I'm afraid due to our ethnic

background being Hispanic that there is a less likely chance that he

will have an available donor already on the registry but we'll see.

The bone marrow transplant coordinator was really sweet to us. She

was explaining to us that if sibling doesn't match that they would

go to registry before family testing would be done because of the

costs. Does anyone know what kind of costs were talking about, I

need to be prepared. How can I get my family members typed is there

a way to have them tested that doesn't cost so much?

ie is doing better today, sore and tired but OK. His

girlfriend was with us through the entire week and nursed my son so

sweetly yesterday. I love this girl for standing by my son not just

with his first diagnosis of CF but by his side during this CML

diagnosis. I don't know many 18 year old girls that would be ok and

love unconditionally when faced with such a scary diagnosis.

Anyway, I will update as soon as we get his results and ask for your

continued support and prayers. The outpouring of support has meant

to much to me and to ie, I let him read all of your posts in

hopes that your words will help him as much has they helped me.

Take care and many thanks again.

Sharon

Fairfield, CA