ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to We want to hear from you.

Friday, July 27, 2012

Happy Birthday Casey Marie Grant

Most of us are familiar with Casey's Cause, a website dedicated to the Awareness, Education and Research of Immune Thrombocytopenia Purpura.

Saturday, July 28 would have been Casey's thirteenth birthday. I would like to ask everyone to honor the memory of her short life by remembering her family this Saturday.

For those not familiar with Casey's story, I have taken some information from the website Casey's Cause and reprinted it here:

Our History
Casey’s Cause was incorporated in March 2007 by a group of family and friends of Casey Marie Grant, a seven-year old girl who was diagnosed with Immune Thrombocytopenic Purpura (ITP), a rare blood platelet disorder. Nine days after being diagnosed, Casey passed away on January 25, 2007 from a massive hemorrhage.

Our Mission
The loss of Casey has driven us to help others learn more about this disorder.
Casey’s Cause has four main mission areas.
   Honor Casey’s life by sharing her story
   Raise awareness about ITP
   Educate both the general public and medical professionals about ITP
   Assist with ITP research efforts

Our mission is to create awareness of Idiopathic/Immune Thrombocytopenic Purpura (“ITP”) through the education of both the general public and medical professionals, and in the raising of funds for medical research.  Our annual Casey’s Cause  Run will be used as a means not only of promoting awareness of ITP, but also as a fundraising event.  We, the board of Casey’s Cause, believe that creating our own organization, (rather than by simply donating our own personal funds to an organization for ITP), will provide opportunities for us to make a greater difference in the lives of those affected by ITP.  We are fortunate to have on our board two nurses and two pharmacists who hope to become more involved in educational programs to spread awareness to the medical communities and to those who might come in contact with those affected by ITP.

We currently support the research efforts of the Platelet Disorder Support Association who work with doctors and patients assessing lifestyle changes as a result of symptoms and treatments of ITP.  We also support the ITP Foundation whose research efforts are based worldwide and start at the cellular level.  In addition, we have teamed up with the Charley Foundation to support a weekend camp for children affected by ITP and their families.  Other funds are utilized to assist families, local or elsewhere, with the needs of their chronically ill children.  Casey’s Cause will continue to meet frequently in order to identify these areas.

More from the website, Casey's Cause 

 Casey was a Pure Gift, a loving and caring spirit, sent but for a wisp of time by an All- Wise Creator as an immeasurable blessing on the lives of those who were privileged to know her. So smart and inquisitive—a second grader who read at the third-grade level, an avid worker of Sudoku puzzles –Casey was truly gifted in many, many ways. Her creative imagination showed through her artwork and written stories.

Mischievous like her father, Casey was adventurous and willing to try most anything. She was a petite, athletic dynamo (albeit, a little lady) who could outrun most of her friends in a footrace. The twinkling in her brown eyes, the wiggle of her turned-up nose (just like Mom’s), her freckles, her always present beautiful smile, her infectious laughter –these paint a portrait of an irresistible imp who scattered joy and happiness around her like a rainbow.

With a maturity far beyond her seven and one-half years, Casey possessed a genuine concern for others, a selflessness seldom seen in a child. Her love for her parents and little brother, her family, her church, her friends and teachers was exemplified in all she did and was. Casey Marie Grant, an effervescent being of exuberant joy: Her legacy is one of exceptional love, happiness and grace – an inspiration to all.

 Caseys mother sent me an email:

I will never be able to forget that this "rare" disorder took my daughter's life. We didn't even have the opportunity to see if she would be acute or chronic. As a nurse, the medical side of things invades my thoughts constantly; always wondering what happened.
This Saurday, July 28, would have been Casey's 13th birthday. Because of ITP, we will never know the young lady she would be today.
So our family battles with ITP every day, even though not in the way everyone else deals with it. We will never be "cured" either.
Your support of Casey's Cause is appreciated greatly, and I hope that more people will see the work we are doing to spread awareness and make a difference in the lives of those who are dealing with this disorder.
Please keep our family in your thoughts on Saturday.
Christine Grant, mom to Casey Marie Grant 7-28-99 to 1-25-07

Let's all remember Casey's birthday on Saturday and also give a big thank you to her mom for keeping her memory alive in such a special way.

Thursday, July 19, 2012

ITP Three Little Letters

We have had several posts from adults with ITP, now we have a mother explaining the anguish of watching her child deal with this blood disorder.

This family resides in the UK but this same scenario is repeated worldwide. I applaud all parents who cope with dealing with their children having ITP.

 It was supposed to have gone away within six weeks, yet three years later those three little letters, ITP, are still a huge part of our lives.

It began with a bruise which appeared overnight on our two year old sons arm.  It was vivid purple, hard to the touch and raised upwe were not even sure it was a bruise at first.  It was the weekend so we trekked off to the minor injuries unit at the hospital, and within an hour of seeing the doctor there, we were at the acute assessment unit of childrens hospital and our lives were changed forever.

The diagnosis of acute ITP is one of elimination: we cant identify it as anything worse so it must be ITP.  We were given an appointment to see the haematologist and went home to google Idiopathic Thrombocytopenic Purpura.  The haematologist told us that 80% of children spontaneously go into remission, more so if they are male and young.  Our 2 year old son had good odds.  We should watch him carefully and wait for him to cure himself.  Watch and waithow hard could that be?

On our second appointment with the haematologist 8 weeks later, we were told that our chances of complete remission were still great. Our sons count was still under 10k (the normal range is 150k to 400k).  We didnt let him have a play centre birthday that year.  We went home to watch and wait some more.

Over a year later, we were still watching but mostly waiting.  We had a lively, active four year old and those restrictions we had enforced in the early days had mostly gone by the wayside.  We had to let him live his life. He had bruises and petechiae but no more serious symptoms. He was about to start school and for me the thought of him running around the playground with 200 other kids was terrifying!

Our haematologist supported us in feeling that our sons quality of life could be improved by medical intervention and we agreed to try Rituximab in November of 2009.  This is a drug (originally developed for chemotherapy) that would basically destroy his immune system and allow him to rebuild it; the analogy we were given was that it was like rebooting a computer to fix a problem.  Our son was 4 and his platelet count was 9k.

Watching your child get hooked up to an IV for the first time is hard to take.  He was fascinated by the process, though, and happy to spend the day on a hospital bed channel-surfing his own TV and playing Nintendo.  The first infusion was slow, the second saw his count rise to 14k  - double figures for the first time since diagnosis.  It was looking good.  Then he contracted chicken poxa normal childhood disease but possibly serious for someone with a compromised immune system.  The morning scheduled for his fourth infusion, he woke up with a severe nose bleed.

We headed for the hospital and were put in isolation because of the dangers of chicken pox for the oncology patients on the ward.  The bleeding did not stop and he started vomiting the blood that was going down his throat.  The consultant gave him two units of intravenous immunoglobulin (IVIG) and a unit of whole blood.  As soon as the IVIG hit his system, he stopped bleeding and was able to sleep.  We spent two nights in hospital and were then sent home.  For a while he lived on the borrowed platelets and started to look great: no bruises, no petechiae.

Then they started to reappear. He had his last dose of Rituximab but sadly his platelet count did not go up any further. Shortly before Christmas of that year we were back in hospital with another unstoppable nose bleed. More blood products given by anonymous donors helped to keep our son alive. 

In Jan 2010 he started school.  Together with the school we put a care plan in place for him.  His consultant gave permission for him to take part in all aspects of school life including PE, but clearly he would need close monitoring.

Two more nose bleeds, two more rounds of IVIG, and spring finally arrived.  The cold season was hopefully over and we would be once again free of snotty noses leading to bloody noses.  With his count running consistently under 10K we were advised not to fly long haul.  So our family visited us last year instead!

Autumn approached and he wanted to do tag rugbywe got medical permission and he loves it!  But every club, sport and outing involves an explanation of his disorder.  Every glance at his bruises when hes out and about makes me feel sick.  Once at the swimming pool, aconcernedmother suggested to me that if my son had chicken pox he should not really be swimming.  His body was covered in its usual fine petechial rash.  My son stopped her in her tracks by confidently sayingActually I have low platelets and my blood vessels burst on their own and thats what you see; Im not contagious!

This last winter was mercifully kindwe visited hospital only 4 times and each time the nasal bleeding stopped without any medical intervention.  His count, however, stayed mostly below 10K. We tried a short burst of steroids but he did not respond to them.

He turned 6 in the spring and had his play centre party, and my hair turned a little greyer!  We are now starting the process of entering him in a drug trial in the hope of raising his count to a safer level. Its a long road and there are many mountains we have to climb before we are even guaranteed to get him the drug. Weekly visits to the hospital for blood draws and he has to learn to swallow tablets!  Even then it will not cure him just hopefully get us through next winter without any hospitalisations.

Three years on, we are still mostly watching our son grow and waiting for his body to correct itself. His most recent count was 18K: low for most people but a cause for modest celebration for us.  Weve learnt not to put too much emphasis on his numbers though, rather to look at his symptoms.  He gets very tired and is often emotional and has a tendency towards always expecting the worst possible outcome.  What he doesnt know about germs isnt worth knowing!

Complete remission is still possible for him although it feels as if it is getting further and further away.  Those three little letters still play an enormous role in our lives but our story is not over yet.  In our family we have tried to put back into the system at least as much blood as weve taken out since his diagnosis (even though the IVIG is made from thousands of different donations). We do what we can.  If you can donate blood or platelets, we really appreciate it and lives do depend on it.