Welcome to Dianna's webpage.

It has been provided to keep friends and family updated on her life with Fanconi anemia (FA).

Dianna was diagnosed with FA in April 1998.

FA causes aplastic anemia (bone marrow failure), as well as many different types of cancers.

She had a few of the obvious signs of FA: missing both thumbs, deaf in her right ear, very small for her age, and had corrective surgery at birth on her intestines.

Dianna had a sibling donor bone marrow transplant at Medical City Dallas, TX.


Transplant date: October 1, 2008

Dianna went to heaven September 1, 2009

HOME:

126 Edgewood Dr.
Lewisville, TX 75067
Phone #: 972-436-4816

Normal Blood Count Range:
White blood count: (normal 4.5-13.5)
Red blood count: (normal 4.0-5.20)
HGB: (normal 11.5-15.5)
Platelets: (normal 140-440)
ABS NEUT#: (normal 1.50-6.50)

Thursday, January 29, 2009

Day + 120 (Total # of days in hospital= 129)

The doctors did not find anything from all the tests that have been preformed on Dianna.
I guess on one hand that is good news- she does not have a virus, etc.
Also, Dianna's blood pressure has been much better this week.
(She is only wearing a blood pressure patch and is NOT having to take any medications by mouth.) :-)
But on the other hand it is not such good news- they have not been able to find out why her creatinine is so high (kidneys are not functioning very well).
So...tomorrow, Dianna will have a biopsy on her kidneys. :-(
It will be done as a surgery, to try to reduce the chances of bleeding-
(the doctor can see the exact spot to biopsy, then stitch her up)
PLEASE PRAY-- that the surgery goes smoothly, with NO complications and that Dianna will be able to go home SOON!

Monday, January 26, 2009

Day + 117 (Total # of days in the hospital= 126)

Dianna is STILL in the hospital! :-(
The doctors have not found what caused the fever.
But her stomach is still cramping...
AND now her blood work shows that her kidneys are getting worse. :-(
Today- she had a sonogram and several other tests to check her kidneys.
The doctor talked to me today about possible doing a biopsy on Dianna's kidneys and stomach.
He is waiting on the tests results from today to make the final decision.
PRAY that Dianna's kidney and stomach will heal without having the biopsy!
And that Dianna will get to go home SOON!!!

Saturday, January 24, 2009

Day + 115 (Total days in the hospital= 124)

Last night Dianna started running a fever and was sick at her stomach. :-(
This morning, the doctor said that he was not worried yet...
He started Dianna on an antibiotic and did blood work.
She is still running a fever.
PLEASE PRAY that the fever is gone by Sunday morning!
She will not get to go home on Sunday, but if the fever is gone she could still go home on Monday!

Wednesday, January 21, 2009

Day + 112 (Total # of days in hospital= 121)

Dianna Riding a scooter during her Physical Therapy...
**Dianna gets to go HOME this weekend or on Monday!!!**
YEA!!!
We are so excited!
Dianna will have to continue to return to the hospital several times a week for checkups-
but at least we will be able to sleep in our own beds. :-)

Sunday, January 18, 2009

Day + 109 (Total # of days in hospital= 118)

Dianna has gone a week eating and seems to get a little better each day! :-)
She has started to take a couple of her medications by mouth.
We are trying to add another medication each day.
(This seems to be the most difficult part for Dianna- she can not swallow pills.)

**PRAYER REQUEST-**
The doctor said that Dianna's kidneys are NOT healing as they had hoped.
At this time- her kidneys are only working at about of a third of her normal working kidney.
He said that they have been damaged by all the medications during transplant and her high blood pressure.
She continues to have high blood pressure, which means she continues to need many extra blood pressure medications.
It is possible that IF they DO NOT heal she could need "Dialysis or a Kidney Transplant". :-(
PLEASE PRAY that Dianna's kidneys will begin to heal. THANK YOU!!!

Wednesday, January 14, 2009

Day + 105 (Total days in hospital= 114)

Dianna with her Hannah Montana Sleep Mask :-)
Dianna began to eat again on Saturday! :-)
I DO NOT want to have a feeding tube for her!
She is trying to eat at least two or three bites at each meal.
I am hoping that she will try to begin her oral medications again on Friday(???).
If she can continue to eat (and keep it down) and take her medications by mouth--
We MIGHT get to go home next week!!!!!!! :-)
**PLEASE pray that all goes well for Dianna...THANKS!**

Thursday, January 8, 2009

Day + 99 (Total days in hospital= 108)

SUNDAY- 1/04/09:
The new line that was inserted into the port last night was not working, so Dianna was sent down for x-ray with dye.
The line was not in the port, so he inserted another (but it was still not long enough)
So he had to insert another line!
3 lines in 12 hours! :-(
Dianna was sore after all the pokes.
Dianna did eat a few bites today. :-)
MONDAY- 1/05/09:
Dr. Lenarsky asked Dr. Elizabeth (Medical Family Therapist) to come talk to me about Dianna.
They are trying to find a way to get Dianna to eat (and take her medications).
Her blood pressure was high after receiving a blood transfusion.
Dianna did not eat today. :-(
TUESDAY- 1/06/09:
Dianna went down stairs to shop and ride around in the wheel chair.
She picked a noodles to eat for lunch. Yea!
She ate a few noodles. :-)
Dianna's blood pressure was high again tonight. :-(
WEDNESDAY- 1/07/09:
Dianna went down stairs again, but started feeling bad.
She did go visit Dr. Lenarsky's office and got a new Barbie.
Back to her room and Child Life worked with Dianna.
While Child Life was with Dianna- we (me, Granny and Pawpa) moved Dianna to a different room.
In Room # 1211 the heat kept going out! :-(
So NOW- Dianna is in room # 1202.
Again today Dianna did not eat and her blood pressure was high. :-(
During the night the nurse gave her medication for nausea-
it caused her to be restless all night. :-(
THURSDAY- 1/08/09:
Dianna went down stairs today for about an hour.
Again today Dianna is NOT eating and her blood pressure has been very high! :-(
The doctors are beginning to discuss inserting a feeding tube into Dianna's stomach- if she does not start eating! :-(

Saturday, January 3, 2009

Day + 94 (Total # of days in hospital= 103)


WEDNESDAY- 12/31/08:
Dianna is still refusing to take a Blood Pressure Medications.
Also, she is not eating. :-(
She is depressed/mad and all she wants to do is lay in bed and sleep. :-(
If Dianna would start eating she could go HOME!
Blood Work:
white blood cells: 2.4, red blood cells: 2.88, HGB: 8.5, Platelets: 11, ABS Neut: 1.440
THURSDAY- 01/01/09:
Again today, Dianna will not eat or take her blood pressure meds.
If I ask her to eat or take her meds, she cries or gets mad. :-(
All she wants to do is sleep. :-(
FRIDAY- 01/02/09:
The doctors are getting worried about depression.
Dr. Lenarsky said Dianna could go down stairs and outside (in a wheelchair without an IV) today- if she would like to. :-)
Dianna said OK, so we walked outside and went to each gift shop in the hospital. :-)
I think Dianna was going thou shopping withdraw. :-)
She was very tired by the time we got back to her room, but seemed to have a good time.
Blood Work:
White blood cells: 2.1, Red blood cells: 3.19, HGB: 9.5, Platelets: 85, ABS Neut: 1.512
SATURDAY:- 01/03/09:
Dianna STILL not eating or taking medications (except Prograf). :-)
This morning she was dehydrated, Dr. Lenarsky doubled the amount of IV fluid.
For the afternoon, Dianna went outside for another walk (the weather was great) and looked around a gift shop.
She also sat in the play area. **SEE PICTURE ABOVE** :-)
When she got back to her room, Dianna had too much IV fluid. :-(
She had to have laxes for the swelling.
Also, because of the extra fluid it caused her line to come loose from her port. :-(
Dianna had to have a new line inserted. :-(
She was NOT happy!