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 us...as 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.

Nurse/Staff Tribute

ICS and Hematology/Oncology Staff at PCMC.

Tyler and I wanted to make a post just for the wonderful Nurses, Techs, and Staff at PCMC.
The pictures below are only some of the amazing people we have been able to surround ourselves with during our time at Primary Children's.  We have been diligently gathering pictures of all the people who have taken part in our journey, however, we know we haven't been able to get even half of those who should be a part of this post...we've decided to add to it as we gather more pictures.  We discovered after gathering several pictures that many pictures were erased by one of the children as they grab hold of our camera...so we will continue to add to this.  We feel like Natalie and Alice will appreciate having names to faces when they are older.

All of the wonderful people below are dear to us and have helped make this journey easier as they have provided comfort, smiles, and laughs during this time of hardship.  They have become great friends to us, we  love all the nurses and staff that we have come to know over the last several years.  Some nurses we knew as they began working at PCMC fresh out of school.  Now they are well seasoned nurses.  Where ever we go in the hospital we run into people we have met over the years.  Resident doctors who are through fellowship and have become attending doctors, techs who have finished school and are nurses; it has been fun to watch the progression.  It is fascinating as well for them to watch the progression of Natalie and Alice over the years.



Alice, Loa and Janet

Trisha and Jordan

Rick and Amber


Mitch and Erick

Ben and Dave

Ben, Alice and Dave

Irish, Ben in the back, and Alice

Janet and Sherrie

Mitch and Natalie


Sarah and Natalie

                                                                  Annie and Marie


Andi and Soraya

Trisha, Jen, and Liz

Bess, Noelle, and Kathryn

Jamie and Dave


                                      
                                                                       Alice and Sara  

Amber and Erika (Lisy's twin ;))

Rachelle (Hemoc clinic child life), Natalie, and Tracy

Student nurse, Gina, and Kaitlyn

Natalie, Olivia (in back), and Irish

Karina and Becca

Britt

Tabitha
(great nurse to have during a code blue)
Amy and Alice

Shannon


Sally, Alice and Breck

Sally, Alice and Josh

Andi

Alena (dietitian)

Alice, Wendy and Sara

Lisy and Emily

Josh, Tommy and Kira

Alice and Courtney

Courtney and Alice

Alice and Ashley

Lisy and Katie (with the foundation)

Sandi and Pam (clinic staff)

Jessica, Stephanie, and Kristin (clinic)

Kathy and Tracey

Sharon


                                                     Gabby, Nicole, Sara, and Camille

Emily and Alice (best of friends)


Paul (Hemo/Onc. child psychologist) and Tyler

Tomoko and Kiara











Thursday, May 3, 2012

Red Cross

Yesterday, we had the opportunity to thank the Red Cross and all those who who came to the aid of Natalie and Alice these past few months. It was wonderful meeting people for the first time who had important roles in organizing blood drives. We also know many of you who lead the charge in the organization were not able to attend. To you we give the warmest thanks and look forward to the day we will meet, and can thank you in person.

http://www.heraldextra.com/news/local/central/orem/family-gives-thanks-at-volunteer-banquet/article_e359a840-9b1c-52d7-a8c8-285739eb8c83.html

How we love all of you. Thank you for the posts, emails and texts of encouragement for the girls. It boosts both Lisy and I in a manor that enables us to move forward  a little faster, and gives us strength to finish each day a little stronger when taking care of the girls.  Our thanks to all of you,  will be forever.

Tyler & Lisy


Tuesday, May 1, 2012

Natalie is Home

Last night went by in a hurry, I wasn't able to post.  Natalie came home late afternoon yesterday.  She was so happy to be home in her environment with her brothers and sisters and all the exciting projects, games, and crafts that have been awaiting her.

To summarize, her PICC line placement was successful.  I was a bit bothered when she awoke from the anesthesia because I was not there and she didn't recognize the people from the OR.  She was anxious and scared.  Once her nurses Shannon and Kaitlyn talked to her she calmed down a little.  I had skipped over to clinic to check on Alice's situation, they paged us in clinic to rejoin Natalie.  I was under the impression that I needed to return in 45 minutes, however, the procedure was much quicker than planned.

As Natalie was in the procedure room to receive a new line, she insisted in administering the sedation medication herself....it was interesting as she pushed it into her old line it wasn't 10 seconds before she dropped off.

Natalie was such a good sport all week.  We were so proud of her and how well she managed herself.  Even the doctors mentioned that she paid more attention to them.  She had some rough moments through out the week and disappointments surely, however, all in all she was content.

The final verdict on her broviac line---it was contaminated.  We feel thankful that it was removed before anything worsened.  Her new line should last until she no longer needs IV assistance.  She came home on vancomycin (antibiotic) which is given every 12 hours through her line and takes 2 hours to infuse.  Because her new line only has one lumen and her infusion meds are not compatible it creates a bit more work on our part.  We anticipate in a week or so she will drop the vancomycin.

Natalie has an appointment with the ENT clinic soon.  We are so excited for her to receive some assistance with her hearing.  We feel she will be much happier.

Now for Alice, her ANC was down again at 400.  Gancyclovir is a anti-viral medication, but can also hinder the production of neutrophils.  Once she comes off gancyclovir we may see her counts recover. 

Lisy

                                This is Natalie and if you look close you can see the line on her chest.

                                                                      X-Ray room

Natalie and Alice spent some time together as we waited for things to wrap up on Natalie's end.