"The tender mercies of the Lord are over all those whom he hath chosen, because of their faith, to make them mighty even unto the power of deliverance." (1 Nephi 1:20)

Thursday, April 26, 2012

So Good To Be Home

Hayley is home!  The doctor left strict instructions that if she starts to retain water or blood pressure goes up we have to head back in immediately.  We are praying to stay home.

When Hayley was told she could go home she asked me if I thought she could go to the temple today and do some temple work.  She hasn't been out of pjs in 2 weeks and not feeling great from all the steroids and chemo and has multiple bruises and a hole in her neck from the shunt and she wants to get to the temple.  She feels bad that she has missed the last 2 weeks. I don't have as much faith as she does, so we compromised on a drive by. :)  What a gal!

Coming Home!

The Dr. just cleared Hayley to go home sometime today! Woohoo! They want to do dialysis one more time today before they take the shunt out of her neck... She still will have to come back for treatments, but in the mean time she'll be at home... The Dr. gave her a bunch of restrictions to follow while she is at home. Hayley can't be around anyone that is sick because her immune system is down...

Tuesday, April 24, 2012

Hayley did another round of the Plazmafereza today and was told she has to also do dialysis because her potassium level is high.  She has been eating a lot of potatoes because it sounds good to her. Since they are loaded with potassium we are going to try something else.  Hayley has been trying hard to eat as well as she can to do her part in this process.  She does not eat any refined sugar, and is trying to follow the word of wisdom.

We are hoping she is still on for coming home tomorrow???

Monday, April 23, 2012


Dr. Mashood our other Israeli doctor came in and said Hayley can go on Wednesday instead of
Tuesday! Still great news because she was originally going to have to stay another week.

They want to limit visitors because she needs the energy to handle the heavy meds.

Thanks for all your prayers!!!!

Best Day Ever!

Doctor Alam, our Israeli Doctor came in just now and said Hayley will do Chemo today and can go home tomorrow!!!!! We are happy over here!!!!

Sunday, April 22, 2012

Kidneys were not so good today and that was discouraging.

Hayley does not like missing her Sunday worrship and appreciated the priesthood bringing her the sacrament. She did her own private study today and came upon the story of the woman with the issue of blood, which she had for 12 years. It was 12 years ago that we now know the Wegeners disease became pronunced with Hayley.

The woman "had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse,"

She knew if she touched thee Saviors garment she would be healed. The Savior asked for her and said: "Thy faith hath made thee whole".

That is our hope. Hayley has great faith in her Savior. Her Patriarchal blessing tells her that she will have health and strength and longevity of life.

Saturday, April 21, 2012

Starting on this Monday April 23, Hayley's immune system will be compromised. She will have to watch what she eats and cannot have flowers in her room. The visits will need to be short and only with those who are very healthy.

She has not done dialysis because her kidneys are functioning. It is very limited, but they are responding.

Hayley wants you all to know that she can feel your prayers. She is planning on a miracle!

Friday, April 20, 2012

Another Good Day!

Hayley was blessed with a spiritual experience during the night. Her body has literaly been
engaged in a battle between the light and the darkness. It has been a fight for her life. The light will win. That has been affirmed to Hayley.

This is the 2nd day that the kidney reports show improved kidney function. WE LOVE MIRACLES!!!

Thursday, April 19, 2012

A good day!

The medicine dripped into Hayleys veins for 15 hours. We were nervous the entire time because her blood pressure went above 200 and her heart went crazy. They did an EKG.

They then took her to do the plazmappharesis. This is where they take out her blood and seperate the plazma out and put in new plazma. She has done this 2 times.

The doctor came in and said that her kidney function was doing better as a result of the meds and plazma. That is the first time we have heard better kidney function. It was a great day! Hayley's spirits are great1

Thanks for all your love and prayers!

Wednesday, April 18, 2012


The doctor told us he needed to put Hayley on a chemo drug and that it has terrible side effects, one possibly causing inferility. That is the only time I have seen distress in Hayley. I called Nate Brooks my brother in law and he started researching. He called back and told us to ask the doc about another med called rituximab. I asked the doc about using that one cause it did not have any risk of inferility. The doc said it couldn't be used with wegeners disease. Then the next day he came back and said that we could use it or the other one it was our choice and we had 2 hours to decide. (he must have researched) Hayley and I looked at the two long lists of possible side effects and talked to Nate again. I told Hayley it was her choice and that she could pray about it and let me know what was the one for her. She said she felt good about the rituximab.

So they started her on it today and we were feeling a little anxious. The doctor came in and said this medicine will make it or break it!!!! A lady that is in Shannon's ward and an Aunt to Deseries best friend, came into the hospital room and said that she had wegeners and ran right down to tell us that she had done her treatent at the mayo clinic and that they were using this new medicine.
She was in remission now and had not one side effect from the med and that she wanted to tell us to try to get it instead of the other meds. She said that this med doesnt kill all of the stuff just the bad stuff?(anti-bodies)??? I asked how can we find out about it? What is the name of it? RITUXIMAB!!! Hayley and I both felt so blessed! I said "Hayley you did a great job recieving revelation"! We know that she may have side effects and all but the experience was just a tender mercy. And thanks to Nate!

-Brenda (Hayley's Mom)

Still smiling

Lots of love for Hayley!  She is grateful to have a private room now.

April 17, 2012

Thanks again for all the prayers.   Hayley does have wegeners disease for sure.  She has to start on a chemo medicine today and start plasmapheresis today as well.  She will be in the hospital for at least 2 more weeks.  Looking at a kidney transplant in the next few months.  She will be doing dialysis as well until the transplant.  We love you all
Brenda (Hayley's Mom)

April 13, 2012

Hi all,
Today was a little rough. I read the doctors notes and he is thinking Hayley has Wegeners an auto immune disorder.  Still awaiting more results that will be definite on the diagnosis.  Hayleys kidneys are not doing so well today so she will be here a few more days.  If they don't do better in the  next day or so she will have to do dialysis.  She is in good spirits and loves visits or calls.
stay tuned
love ya  brenda

April 11, 2012

Doc came in and is connecting the problems to her eye tumors ... He is smart.  Saying everything I have always thought.  They are running tests today and will biopsy tomorrow
Will let you know


The doc thinks there is a connection between the tumors and the maybe the lack of oxygen and the high blood pressure and the kidneys. I have thought that all along and we have been to multiple doctors and none of them have heard of it or thought there was a connection. No one could figure out why she has high blood pressure either.
They took 12 vials of blood today and did many tests.  She is doing minor surgery in the morning.  This doctor seems very thorough.  We are hoping this will all lead to answers and resolution.
Thanks for all your prayers!

April 10, 2012

This is the news from last Tuesday April 10, 2012 before Hayley went into the hospital for testing.

Hi Family and Friends
I am just letting you know that Hayley is having kidney failure and I wanted to ask you to please keep her in your prayers.
She is going into the hospital in the morning for some surgery and to try to find out what is going on.  She has very high
blood pressure and it may have messed up her kidneys or her kidneys are making her blood pressure higher. We don't know for sure which.
Her blood pressure is at 175 over 120- 130  even with medicine.  We will let you know when we know more.  ( If we can understand what the doctor says!!!!  strong accent!!!!)

I know you all have your own struggles!!! I am sure we all need each others prayers!
Brenda (Hayley's Mom)

Getting Started

This blog has been created to help keep family and friends posted with up-to-date news on Hayley's progress. Brenda can't keep up with all of the voice mails and messages that have been coming in. She wants to concentrate on taking care of Hayley!! :)