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.