When I took Hayley to the Doctor last week he looked at her last lab results and then with much emotion said to me, "Why doesn't she have any iron?"  I sheepishly said "I don't know".  He obviously was upset.  They dripped 2 bags of iron into her in the hospital but the concern is growing as to why she is not retaining it. But at least they let her leave the hospital.  We were grateful for that.

She is to see a GI doctor to see if he can figure out what is wrong.  We also start the training in dialysis this week and will have 4 long days of information and doctor appointments and training at Mayo next week.   Mayo sent us an agenda with every minute accounted for.  They may not be so anxious to get started when they learn that she has no iron.  Just a thought.

Life if good and Hayley knows she will be normal and healthy and well some day soon.

The surgery went well and Hayley is in recovery. We are hoping she will be able to come home tonight but won't know till late tonight.  She will now be able to begin dialysis at home in the next 2 weeks.  She is going into Mayo just after Thanksgiving to start the long process for transplant.  She and her mom will do 4 long days of training and appointments to make the preparations.  We will then search for any volunteers for a donated kidney that fit the right criteria.  As always Hayley is in good spirits, a little discouraged because she was hoping she would not have to go through this. She knows she will live a normal healthy life and have a family and that gets her through.

Surgery tomorrow

Hayley was admitted to the hospital again this morning.  Her kidney functing is dropping very low.  She needs to start dialisis soon.  She will have surgery tomorrow morning to put a "port" (not sure what it is called it may be a cathedar) into her stomach that will enable her to do at home dialisis.  The surgery is not long.  If she does well she can come home tomorrow night.  Hayley will need to continue dialisis from here on out until she gets a kidney transplant.

Hayley's kidney function is at 10 percent.  Mayo Clinic just called and said they are going to set her up for a transplant.  We have spent 1000.s of dollars on trying to get the kidneys to kick in and heal but the function is not improving.  One doctor said that the kidneys have improved but the brain is not sending the message for the kidneys to kick in. 

When Hayley was born, the doctor used a suction device to help her be born and we believe it harmed the pituitary gland in the brain.  This is the place that Wegener's disease originates according to some experts.  So we are not sure what else to do at this point except go with the transplant.  We know that the brain can heal but there is not a lot of knowledge about it.

Hayley continues to have a great attitude about all that she is going through.

The doctor has given Hayley a break from everything for the time being.  He is waiting for an insurance to come through for her so that he can do a kidney transplant.  Hayley is trying and praying like crazy to keep the kidneys she has.

Her last kidney function test was at 16 percent and that is up from 13 percent.  Her other levels are slowly improving but aren't sure if it is enough to keep the doctor at bay.

We received a call that notified us that Hayley qualified for the chemo drug to be donated.  Our sweet Rituxin.  It is $25,000.00 a bag and Hayley received 4 bags.  Since we don't have insurance that was a great blessing.  They also discounted the hospital bill down to almost nothing in comparison to the cost.  We have been very blessed in many ways.

Thanks again for your prayers and for your continued prayers for her kidneys to heal.

Remission!!!!!!!

We just came back from our sweet Israeli Doctor Mashood.  He said without emotion "The marker is now not present that attacks Hayley's kidney."  Translation:  remission.  He did not say much else except she can now start drinking more water.  Her kidneys are still very damaged but not being attacked.  This gives us time to do some of the alternative things that rebuild the kidneys and eliminates scar tissue.  If Hayley is successful at this we believe she can avoid a transplant.

Hayley is vigilant in eating healthy.  I am very proud of how determined she is to eat only those things that will support her body and not slow down the healing.  We know a lady with Wegeners that has kept it in remission by eating very well.  This is our hope.

THANK YOU FOR ALL YOUR PRAYERS AND FASTING AND LOVE AND SUPPORT!!!!!
Prayer works.  The medicine worked.  Faith works.

Hayley completed her 4th and final round of the chemo today.  Her kidney function has increased from 12 percent to 13 percent.  We are grateful for that.  Hayley continues to eat as healthy as she can.  She feels like she must do all she can to participate in the miracle she is praying for.  She has been able to go to the temple and to her meetings.  Her spirits are good and she continues to have great faith.

A long day at the hospital.  One more round of chemo and the doctor sent Hayley home saying that if the kidneys do not kick in and show improvement he will have to give her the other chemo medicine that we were hoping to avoid.

We ask for your continued prayers.  For those of you fasting this Sunday would you please add Hayley's name to your fasting requests?

Hayley has a lot of hope and faith and keeps rolling with the punches.

Thank you all for all you are doing!

We made it through the weekend!!!  Hayley did blood work yesterday and today our sweet Israeli Doctor said that he was encouraged with the blood results.  He said the kidneys were functioning exactly the same as they were the last 2 days in the hospital.  I was thinking to myself "Is that good?"  But he was pleased that the kidneys had not gone down hill further. (they had dropped every day the first week in the hospital).  Since the chemo treatment they have not gotten worse.  So Yay!!!

Hayley will go back into the hospital tomorrow and do another round of chemo.  She has not had any negative side effects and her white blood count is still very good.  It is because of the prayers and because of the medicine Hayley felt impressed to choose.

We feel your prayers and are so very grateful!!!  We will know more about need for transplant and dialysis in the next 2 weeks depending on how much the medicine brings her along.

Hayley is trying to do all she can to be healthy by eating well and keeping the spirit with her.  Eating has been very difficult on a low sodium and low potassium diet.  Everything healthy is high in potassium.  But we are getting creative!

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...

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???

Retraction

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!!!!

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.

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!

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!!!

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!

4-18-12

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!! :)