THE COX KIDS HOMEPAGE

It's a girl! 

Chris and Vickie never dreamed the eight months after Grace's birth , the doctor would give them news that would set their family down a foggy path of doctors and misdiagnosis.

Then, one by one, they would eventually learn that all three of their children had Congenital Neutropenia.  Many doctors later thought it to be  Shwachman-Diamond Syndrome (SDS).  This was later the diagnosis.   This disease is chronic and life-threatening.  Eventually requiring a bone marrow transplant as it often progresses to Aplastic Anemia, MDS or Acute Myloid Leukemia or simply subcoming to overwhelming infection and dying.

The Cox Family began to seek out competent, experienced medical care for this rare disease.  This journey eventually led them to Duke University in Durham, NC.   Shortly after moving their family to North Carolina, they started to hear of another doctor in Cincinnati Ohio who had a better treatment plan that seemed to hold more promise.  They made the trip to Cincinnati Children's to a Dr. Richard Harris.    He has had a lot of experience with another rare syndrome called Fanconi's Anemia.   Both Shwachman-Diamond  and Fanconi's share difficulty transplanting and need special low dose chemotherapy since these diseases cannot tolerate high dose chemotherapy's.  For unknown reasons, kids with SDS will develop organ failure if given the stronger treatment.   

Dr. Harris has been watching the children very close by doing bone marrow biopsies and asprirates every three months and they all three also recieve IVIG infusions at the hospital every month.  Grace and Samuel both continue neupogen injections everyday.  Several doctors, including the one at Duke did not agree that  Grace should wait for a transplant nor do they think she should continue neupogen injections with any level of clones or in Samuel's case any MDS features. " However, we just didn't feel comfortable about moving forward at Duke with a transplant since learning how few kids survive, expecially with full intensity chemo with cytoxin and unrelated donors, which none of my child have a related donor putting them at higher risk.  Grace has an added high risk since she has only one left kidney. " 

This family do plan to make certain thet they are followed very close and that if they ever feel they need another opinion, it will be done right away.  We feel that we didn't have all the right facts before moving to NC ,yet we do not regret coming here for they would not have gone to Cincinnati any other way.  Since being in Cincinnati, we have found out  more about our children's health and the treatments.  "Our kids also have immulogical defects with T-cell and NK cell's."  Grace has an inability to hold onto immunizations and with her the lack of neutrophils as well as her other hemotological defects, she is already been a living miricle!  The boys too have similar T-cell and Nk cell  issues and chemotasis issues in regard to their neutrophils.  This means that they also have a lack of neutrophils but they also do not work correctly.  

Many kids do not make it through a transplant and often even if they do, it isn't for more than five years with traditional chemotherapy treatments and transplants.  With the new reduced intensity, they will just have to wait and see since the oldest one out is only around two and a half years.  There are also many factors that go into successful treatmant and outcome of transplants.  Having a related donor increases the chance of survivial by a lot.  Being in a realtively healthy state and not waiting too long yet also knowing how serouis the treatment is, not going too early.  Many doctors leave the opition up to the parent, as they know either way is a gamble.  This is a tremendous load for a parent to handle.  You search and search everywhere and talk to everyone and realize, there isn't really anyone who can give you an answer you want to hear.  

 The support lists are filled with mothers and fathers and even patients srcambling to find a place or a doctor who will care and finally help thier child.  When you go to camps and met these parents, you realize, that knowone else has an answer and they are all in the same boat with little hope.  It has taken them losing our home,  family and friends,  church and grasping for any way they can have a piece of hope to realize, our only true hope is in the Lord.  With prayer and the strength that He continues to give them, they are able to stand up and brush off, and start back trying.  They will never give up on their children, just as He has never given up on His children.  He substains us and won't fail us.    

  The current care of monthey IVIG treatments and all the other tests has taken a toll finically and this will continue more than likely all their lives long.  They have insurance with out of pocket max's that do not pay what they should.  Often, legal action in order to continue to recive care.  There are many misconsiptions about insurance and what it should do and what it actually does to a family of three extremly expencive children as well as there being all kinds of public programs available to families like them. This family have learned and continue to watch families like themselves in up on goverment assitance only after having to quit a job in order to qualify for help.  In the state of Ohio, the most a family of five can make to qualify for goverment assitance is 23,000 and that still won't cover all expences.  You can have nothing!  No Home, car or any cash. 

The avearage cost of a bone marrow transplant is $650,000 to one million plus. The average Medicaid payment for a transplant is $75,000, who do you think gets the transplant?  Thae fact is many kids die waiting  for money to be raised with private insurance too.  It's hard to beleive this unless you are in it. The doctors care but the hospital adminisation don't see your child and don't care. They are in buisness and $75,000 vs 1 million is bad buisness!

The Medicare level of these kids force you to stay within your state and go only to certain hospiatl, usually where there isn't any doctors who have ever even seen such a case.  We want our children to live and have the best care possible just as any parent would.  We realize how blessed we have been and can only pray that God will substain us.  They had also take care of my elerly father who is on the system and again, many of his perscriptions wern't covered.  We know so many families whose children didn't get a transplant due to lack of funds.  They simply die and that is the harsh reality.  This doesn't include care until the transplant, nor the cost of finding and preparing the donor or the after care of expensive drugs.   Even with health insurance, the family's share is astronomical. 

This family lived in the greater Lee's Summit, MO area and has been blessed by much support from family, friends and their church home.  They are thankful for the many prayers and depend on Christ to meet their needs.  Please continue to pray for these children's health and treatment.

If you would like to help, you can make your tax deductible donation to:  Abundant Life Baptist Church (benevolence fund in memo), 414 SW Persels, Lee's Summit, MO 64081.  Church phone 816-554-8181.  Checks or other funds must be designated as benevolence for this family to receive the donation.

There is often many fundraisers going on, check the fundraiser link to find out about any current