hello to all my friends

[Guest guest]

Hi Group! I know it's been quite some time since I posted any

messages. So much has happened, I do not know where to start. My

divorce was final on Monday, December 15, 2008. I have temporary

sole custody of my son, Kaleb (he's 6 years old now and in first

grade). It was an awful fight to keep him because the Court

recognizes that my illness is unpredictable and unstable, which are

the two most important aspects in their eyes when deciding custody.

I have been told by the Judge that the fact that I am terminally ill

is very sad, but that in deciding custody issues it will be to my own

detriment. They seem to lean toward giving custody to Kaleb's

father, however, I am still fighting and so far I am winning. Kaleb

has been with me all of his life (except for 30 days - the month of

September - I let him try living with his father). His father thinks

my instability is grounds enough to give him custody and we are

definitely at odds over this. Kaleb does not want to live with his

father and I know I am better suited to care for him and give him the

love and affection he needs. Even when I am sick and having a bad

day, my mom is only a phone call away and steps up to help me with

Kaleb anytime I need her. To make matters worse, Kaleb's father has

not paid any child support since May, 2008. The court has ordered

that he pay child support and he then announced that his job had

ended as a coal miner in a coal mine in West Virginia. The wage

attachment is in place and I should get at least one payment before

his last day of work on February 3, 2009. Financially, things hav

been extremely tough. When Kaleb returned from his short stay with

his father, his father refused to return any of Kaleb's clothing or

belongings. I picked him up on September 30, 2008, with only the

clothes on his back. No toys, no bike, no computer, no DVD player,

no clothes, no shoes, no winter coat, no boots, absolutely nothing.

Since that time I have argued for the return of Kaleb's belongings,

however, his father has only returned a few items. Thank goodness

for the Salvation Army, the Goodwill and the donations of family

members. I had to entirely re-wardrobe Kaleb so that he could go to

school. The school donated a pair of tennis shoes to him because I

did not have any money to buy him a new pair. I have faced

repossession of my vehicle, among other financial crisis, but my

faith has never changed. I know that I will pull through this and

will be stronger for having done so. The " toys for tots " program has

donated a Christmas meal for us and 2 new toys for Kaleb. This

child, my adorable son, has never - not even once - complained that

he does not have any toys! He has never looked at this situation as

formidable. He sees me cry tears of sorrow for him and he is telling

me, " It's o.k., Mommy. I don't mind not having my toys. " I thank

God every day for giving me such a blessing! Our next door neighbor

gave Kaleb 2 used bicycles and he has learned how to ride a 2-

wheeler.

As for the IPF, I am still on the transplant waiting list at UPMC in

Pittsburgh, PA. I have been listed since late June, 2008. My

antigen count is very high and it is highly unlikely that a donor

match will be found, however, I will never give up hope. My

breathing is worse than ever and my oxygen needs have increased

substantially during the last six months. I was hospitalized in late

September for another bout of pneumonia, and this time it was viral

in nature. It did not respond to antibiotics and I was very scared.

I pulled through and was released from the hospital after one week.

In October, 2008, I had to undergo a series of re-testing at the

transplant center because it had been one year since my pre-

transplant evaluation. Of course everything showed what I already

knew - I am getting worse. The good news is that I am still eligible

for transplant and I continue to keep my phone at my side, just in

case. I read the posts about Kerry! How wonderful! We were both

listed earlier this year and I am happy to hear about her - it gives

me renewed hope. How is Gwynne? The last I participated in group

discussions she had had her transplant and recovered quite well.

Sher, Bruce, Peggy, Joyce and all of the others I communicated with

on a regular basis - I missed you guys. but you were never far from

my heart!

God bless and love,

Tina

IPF 04/07 PH 11/07 listed for tx 06/08

Ohio