The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Sunday, May 6, 2012

Doctor Tribute and Nurse Practitioners

Our family is very thankful for the Doctors who have helped us reach this point in our lives with the girls.  It has not been easy or simple.  We needed the best of the best, and that is what you will find at Primary Children's Medical Center...the Best!

Hematology Team

Lisy, Alice, Dr. Yaish, and Natalie

Dr. Hassan Yaish was the first doctor we met at PCMC in July 2007, only four years after our medical journey began with Natalie.  He is an amazing Hematologist and has been dear to our hearts as he has saved Natalie's life many times.  He is very important to the department and in high demand.  He is an expert with the microscope.  The one who replaces him will have large shoes to fill.  He has been trying to retire for many years, however, has not been successful due to people like us and others who begged that he stick around longer.  We teased him that he couldn't retire until Natalie and Alice were "all better".  He knows how much we appreciate him.

                                                                   Dr. Yaish with Natalie

We have seen many doctors in the Hematology Oncology clinic, they are all wonderful, we just don't have pictures of the others.

Dr. Yaish's nurse practitioner Renae Marlett.  She has been wonderful and incredibly helpful, very involved, and well appreciated.  Renae does not miss a detail...we love that about her.  She is a great listener.

Penny (nurse), Lori (nurse) and Susan (hematology clinic)
Dr. Yaish's crew

Bone Marrow Team

Dr. Michael Pulsipher, and Nurse Practitioner Hilary Isenhour

Dr. Pulsipher was the doctor who conducted our first bone marrow consultation, he provided helpful information as we began the decision process of the girls treatment plan.  He is also helping us train our minds that hand sanitizer will not always be a part of our daily life.  We are having a hard time believing him... ;)  However, he is very knowledgeable and experienced, so we will trust him.  
Hilary is wonderful, she does a lot of work and very willing to address all our needs, even at 3:00 am.  She is patient and good at what she does. 

Dr. Michael Boyer

Dr. Boyer we met later into the process as we began the pre-testing for transplant.  He is great at keeping things calm and relaxed.  He enjoys the girls and thinks Natalie is funny.  As crusty as Natalie can be around doctors, we appreciate Dr. Boyer finding humor in her.  

Student Doctor, Dr. Meghann McManus, and Nurse Practitioner Brenda Mueggenborg

Stefanie and Shaunda (Bone Marrow Nurse Coordinators)

Dr. McManus is very sweet and explains things so well.  She too was there at the very beginning.  She was wonderful in helping us understand all that bone marrow transplant entails.  She clarified many questions we had as we began this journey.  She has been a great sport to work with the media.  
Brenda is also very helpful...she like Hilary take care of all our direct needs.  They do a lot of work and spend late nights making sure the girls are well.  She is very understanding and accommodating.

Immunology Team

Dr. Karin Chen and Dr. John Bohnsack

We first met Dr. Bohnsack when Natalie was in the PICU on life support in Nov. 2009 with the H1N1 virus.  We did not request to see him, yet he found we understand it.  We however, were anxious to see an immunologist.  He was fascinated with Natalie's medical records.  He is a brilliant man, and looks for ways to solve mysteries.  We visited with him in length, and realized at that time that we needed to work with him in order to find the roots of Natalie's medical mystery.  
Alice actually became a patient of his before Natalie.  Alice provided question for genetic testing as she developed similar problems as Natalie.  It was a year later that we tested Alice for SCID...which is where Dr. Chen comes in.  She is involved in gene sequencing and suggested to test for a RAG deficiency on the DNA.  Dr. Chen is very knowledgeable in the subject, we are glad she became part of our journey.

Infectious Disease

Dr. Ampofo and Resident Dana

Dr. Ampofo has played a vital role in Natalie's well being.  In July 2011, Natalie became very ill and was transferred to the PICU  with severe pneumonia.  The antibiotics that were given during that time did not help.  The doctors were moments away from intubating her when the lab called and reported that she tested positive for Legionaries disease.  This is a rare pneumonia that broke out in an army camp many years ago.  The doctors at Primary Children's had never seen a child with this disease...nor had seen a case of it in many years.  It was doctor Ampofo who was thinking outside the box and sent for this simple test...which is actually a urine test.  The results came in the nick of time.  Once they administered the proper antibiotics, Natalie turned a corner and began to improve dramatically.  We are thankful for Dr. Ampofo and other doctors who have made a difference.

1 comment:

  1. Tyler and I wanted to make a post just for the wonderful Nurses, Techs..

    Nurse Practitioner Jobs