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Jorli and Baby Gena

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Good Morning Everyone, and again thank each and every one of you for your prayers and thoughts for Baby Gena and my family.  I spoke with Jorli earlier this morning.  Gena's most recent brain wave testing showed normal brain wave activity.  Gena continues to respond to her mother's voice and touch and the doctors do believe they have removed enough pressure from the tumors at this time to alleviate Gena's inability to sleep consistently and to alleviate her vomiting and lack of appetite.

The brain wave testing will continue daily until tests to determine if those tumors are malignant or benign. I will update you on that as  soon as we know.

Sandy K., Jorli is going to call you later in the evening today.

My family and I are truly thankful for all of your well wishes and prayers.

I cannot express that enough.  Jorli was very overcome with emotion from all the support and outpouring of care and prayers from all of you.

With Thanks,

Daniel & Jorli

Entry #2

Comments

1.
ToddComment by Todd - December 9, 2005, 2:22 pm
Thank you for keeping us updated. I continue to keep baby Gena in my prayers.

-Todd
2.
mswiz777Comment by mswiz777 - December 9, 2005, 3:14 pm
Baby Gena will be in my prayers and she is in GOD HANDS.



Mswiz777
3.
emilygComment by emilyg - December 9, 2005, 3:32 pm
thank you for update. emily
4.
Qdg99Comment by Qdg99 - December 9, 2005, 3:42 pm
God Loves the children of the world. Baby Gena is surely in his hands and we will continue to pray for all of you.
5.
SnakeyesComment by Snakeyes - December 9, 2005, 4:11 pm
Ditto from Cleveland! You're on my mind and in my prayers.

Snakeyes
6.
fast eddieComment by fast eddie - December 9, 2005, 7:24 pm
GOD bless you and your family.
7.
chevelleComment by chevelle - December 9, 2005, 7:25 pm
my prayers are with you and your family.
8.
nobie23Comment by nobie23 - December 9, 2005, 8:00 pm
God is good all the time--my thoughts and prayers to baby Gena and family
9.
LuvToWin616Comment by LuvToWin616 - December 9, 2005, 8:42 pm
Jorli you and your family are in my prayers everyday , God bless your family
10.
TigerAngelComment by TigerAngel - December 9, 2005, 10:42 pm
Several times a day I am praying for your baby as thoughts of her come to mind. God bless you and yours.
11.
Comment by LOTTOMIKE - December 9, 2005, 10:55 pm
my thoughts and prayers are with you.i have a daughter born last november and a son born this november.i hope things get better for baby gena.we will pray for her,god bless.........
12.
emma pearlComment by emma pearl - December 10, 2005, 12:49 am
Jorli and Daniel, think postive and believe in the powers of God. Keep talking and stimulating Gena. I, strongthly believe everything is going to be ok.   The postive point there is brain wave. Some children are born with tumors that are not malignant. Gena and the rest of the family is always in my prayers. I, remember when my mother when through cancer over 12 years ago. Part of the theraphy was postive thinking, focusing and concentrating on terminating that cancer. I, am not saying Gena has cancer, but i am telling you to think only postive thoughts on terminating that tumor. Jorli and Daniel much love you are always in my prayers. Give Gena a big hug and let her know many people are praying for her and love her.      Love Emma Pearl
13.
LANTERNComment by LANTERN - December 10, 2005, 3:32 am
All that we can do is pray to Jesus for her complete recovery, nothing else will do.
God bless Gena and all of us.

14.
nanmaxsplaceComment by nanmaxsplace - December 10, 2005, 4:21 am
Daniel & Jorli
THE LORD WILL WATCH OVER GENA
IN PRAYING FOR ALL OF YOU
15.
Litebets27Comment by Litebets27 - December 10, 2005, 10:56 am
I pray that GOD will touch Gena with HIS MERCIFUL HANDS and heal her, and that GOD helps you and your family to keep the strenght and courage that you ALL will need during this trying time.
16.
angelmComment by angelm - December 10, 2005, 11:18 am
God bless and keep the faith-prayers are with you and your family
17.
Jorli DComment by Jorli D - December 11, 2005, 10:58 am
To all LP Members, the news today is not good. Yesterday afternoon Jorli called home and told me the biopsy report was back. The cluster of tumors are malignant. The doctor has told Jorli that he would not feel comfortable removingthe tumors because of wherethey are located on the brain. To attempt cutting or partially removing the tumors could and would likely lead to paralysis and brain damage, that could leave Gena in a vegetative state. His safe option as he called it was to give Gena chemotherapy, beginning immediately and to hope over the next 2 years the tumors diminish. While he was short of saying Gena's chances are not good, Jorli and I have made the decision to allow the chemotherapy and to continue giving her the best medical care we can. She has recieved a palstic eye in her right socket, but the doctor chose to leave the left orbit intact until at least 4 weeks of chemotherapy has been completed, and the swelling has decreased.

As you all can imagine, Jorli is going through a living hell. As of right now, the physicians caring for Gena in Chicago are making arrangements with a Pediatric Cancer Specialist here in our hometown, and it looks like Gena will be home Tuesday and begin chemo within the next few days. Jorli has an AOL address that any of you can contact her through, just to say hello and lift her spirits. We both want to thank Todd for letting us blog such a horrific topic and we feel we should not sullen the mood of those of you using this site. Jorli will not be leaving LP, but it will be awhile before she is back on. Her email address is JorliDeBeers@aol.com. Please be patient if you want her to respond back as for a few weeks her time will be consumed with Gena and her care, but I do encourage any of you to send her inspiration. We are forever thankful to all of you.
Sandy K. I want to thank you for sharing your personal stories with Jorli, and for the comfort you gave her over the phone and for always being there for both of us through this crisis.

Todd, again thank you for the blogging site and we both think LP is the best lottery site on the WEB! It's a great place with great people.

God Bless Everyone!

Daniel and Jorli & Kids
18.
Comment by awin4pam - December 12, 2005, 10:07 am
I will continue to pray for Baby Gena! May the Lord continue to give you strength and like never before, may you feel his never ending love, grace and peace during this difficult time. There is no failure in him...continue to trust him!!!
19.
wpbComment by wpb - December 13, 2005, 7:33 pm
I am so sorry to hear the bad news and pray that you get the miracle you need now. My heart is very heavy and I will keep you and Gena in my prayers.
Paulette
wpb
20.
Jorli DComment by Jorli D - December 13, 2005, 10:42 pm
THank you everyone for all the kind words and thoughts and especially the prayers. Baby Gena and I are back home in Michigan. Thursday she begins chemotherapy and it will be 5 days a week for 3 weeks. After that the doctor will remove the left eye and replace it with a plastic eye. Gena is less fussy and she is sleeping better these days. It was great getting home to see my little boys as well and despite being totally drained, I chose to spend time out of the house with my oldest son, 2 year old Jordan and it felt great. We have great health care, and Gena will have a nurse that will be here to help me daily for awhile until we get things on schedule for her continuing medical care. Unfortunately, I have to travel 50 miles Monday through Friday with her to and from the treatment facility, but it's nothing that is worth complaining about, because she is home and just to see and hear her cooing and rolling about and acknowleging her surroundings the best a baby can do, is worth the long trips to the doctor. Please, please, please continue to pray for my little girl and I appreciate all the encouraging words and prayers.

Jorli D
21.
Jorli DComment by Jorli D - December 13, 2005, 10:46 pm
Nanmaxsplace....what a beautiful card! Thank you!
22.
nanmaxsplaceComment by nanmaxsplace - December 14, 2005, 4:13 pm
Jorli
My heart goes out to you,keep up the faith and trust in the Lord.
God bless baby Gena and and your family.
Keep us posted and if you need anything let us know
23.
Sandy KComment by Sandy K - December 15, 2005, 11:12 pm
Daniel, Jorli and Family, it was my honor to do as much as I could. As you both know, I had a retinablastoma when I was 3 months old. I have an artificial right eye. They caught the tumor soon enough so it didn't spread to my left eye but I have a plate in my head where they took a chunk of brain tissue out. This was so personal to me. I was so hoping to teach Gena things that I had to learn to do....things like pouring a glass of milk, throwing a ball and hitting the mark, etc. Most people don't know that people who are only sighted in one eye have no depth perception. It is a learned activity that takes a long time to accomplish. Walking was extremely hard when I was a child. When Jorli told me about Gena, my stomach dropped. I know what I went thru as a child with all the radiation treatments and difficulties. My mother is the strongest person in the world in my eyes. She helped me to become "normal." Gena is very lucky in the same respect. Jorli is a very strong and determined mother who I have great admiration for. My mom told me that when she was crying after the diagnosis for me, the doctor told her, the Lord knows who is strong enough to care for her and also who will love it with all her heart. My mom is a special to me to this day. I told Jorli that she is a special mom also. Jorli loves all 3 of her children deeply. I know that she will have the strength to get thru this. I admire her greatly. I can hardly wait for the day when I can hold little Gena and hope that she feels the love of her "godmother." I am glad I only live a few minutes from you all.
24.
Qdg99Comment by Qdg99 - December 17, 2005, 10:22 am
Glad to hear that Gena is at home where she is most comfortable. I thanks God for placing strong people in all of our lives. Jorli, Daniel, and Family, it seems that he place Sandy K in your lives for this very reason. I thank him for that. I will continue to pray and I know with the powerful prayers coming from the lottery post family, EVERYTHING will be fine.
25.
Jorli DComment by Jorli D - December 17, 2005, 12:31 pm
Hello everyone. It's been 2 days of chemotherapy for Gena and she is getting through it fairly well. She sleeps during the 2 hour chemo drips and so far has had no reactions like nausea and vomiting. We know that could come, but we're prepared for all the side effects. Thank you Sandy for being the best friend I needed when I first told you what was going on with my precious baby girl. We're seeing almost daily how much progress has been made with Gena since the surgery. She is sleeping more, although her sleep pattern isn't consistent. She s no longer screaming for hours on end which we now know was due to the pressure of the tumors on the brain. We cherish every coo, giggle and even temper tantrums she has, because they are signs she is rebounding from the ailment. She responds very well to our voices and reaches out for us to hold her.
We do feel God's blessings already and we know its the many many prayers all of you have sent our way.
It is priceless having people offer so much love and prayers and concern when you need it most.
Thanks to all of my LP family, for all that you do.

With Great Appreciation,
Jorli

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