Something New For ITP Awareness

Last month, I was sitting here in my cluttered office debating on whether I should start cleaning this place up or do something else.

Cleaning is my least favorite activity so the "something else" option was open for any clever ideas that might pop into my head.

Earlier that day, one of our fellow ITPers, Tom Schilling, had asked about where to find decals his auto-racing buddies could put on their cars and equipment to promote ITP Awareness Month. PDSA had some decals but they were too small and custom-made decals were too expensive.

Ah ha, maybe I could make something with my handy-dandy Paint.net program. That lead me to making several designs to put on various items in my Zazzle store and now I'd like to present my efforts to you.

I'm a firm believer that we need to spread the word about ITP Awareness, not only in September but all year round. So I made some coffee cups, tote bags, key chains and bumper stickers that would make great conversation starters in our quest to inform our friends and colleagues about our blood disorder.

 Take a look at the items I created and give me your thoughts, constructive criticism and any other ideas you may have on how I can accomplish my goal of "Spreading the Word."

I'm going to make more designs and try to add some T-shirts and posters to my Zazzle store as time goes on. 

Take a look, and see if there is anything you'd like to purchase. A portion of the royalties will go to PDSA.
Here are the links:
US 
UK                                    
Canada 
Germany 
Spain 

France 

Sweden 

Netherlands

Norway

Switzerland

After you get to my home page, click on this icon to go to the ITP store: 

Thank you my friends and may you all have high platelets.

Happy ITP Awareness Month

Hello Everyone! My name is Erica and I have ITP. I've had ITP for 26 years. 

My parents took me to the hospital because my nose was bleeding and I was bruised from head to toe. The doctors had told my parents that I had a rare blood disorder. At the time the doctors didn't know how to treat it. As life went on, I would experience flare ups, some minor, others major. I was never allowed to play sports or do any kind of physical activity. Playing with my brothers and sisters was limited because they were very active. Sometimes all I could do was watch from a window.

As I got older into my teen years I had an episode where my platelet count dropped to three...yeah not three thousand but three. Doctors immediately wanted to remove my spleen (apparently that was the “cure”). My dad refused as he thought there would be a better way. After meeting with numerous doctors he finally found someone who would listen. Her name was Dr. Goldberg, and she started me on prednisone and IVIG. I was in the hospital for two weeks. My platelet count would go up and down but eventually stabilized.

As a child with ITP, I went through a lot of teasing because I had the "moon face". I learned how to laugh it off and move on but more importantly, this is where I formed my relationship with God. For the next few years, I would experience a couple of flare ups but nothing major. At that time I had an excellent Hematologist who kept up with my platelet count.

I later on became a preschool teacher (one of my dreams), but I kept getting sick because of the germs and viruses that was going around. One day, I was outside with my students and my nose began bleeding. My first thought was that I had another drop in my platelet count, so I was pretty scared. That day, I was walking home because I lived around the corner from my job. My husband happened to be on his way home and saw me walking. He described my walk like as if I was about to pass out. But I told him I was okay.

Later in the night as I was getting ready for bed, I looked at my legs and saw they were covered in bruises. I immediately called my husband in the room and said we have to go to the hospital. We went to the hospital and doctors ran some tests. I overheard some of the nurses talking and I heard, "do you want me to tell her or do you want to tell her." I started crying right away because I knew my platelet count was lower then I thought. One nurse came in and held my hand and said, “I don't know how you survived the day.” Confused, I didn't know what to say. She continued to tell me what my platelet count was.

One.

So I had to quit my job (a job I loved) as a teacher and my husband gave me the option of not working altogether. He felt that it was more important for me to be as healthy as possible. He knew that it would be difficult for us financially, but he told me that he would figure it all out. Thankfully, there wasn't that much to figure out.

Now I am 30 and haven't had an episode since. I am always checking and I get my blood checked periodically. Though my hematologist told me I would have this for the rest of my life and it is something I am going to have to keep my eye on, I try to stay positive. I started working out, eating healthy and taking my vitamins. I didn't want to spend a lot of time on the couch so I started my own photography business where I have control over my schedule. I also spend a lot of time with my son who is my little hero (ever since I had him my count has been wonderful).

I must say I owe everything to God because He gives me strength. He gave me my husband and my son, who are my support. He has shown me that I may have this disease but I am not defined by it. ITP does not define me, and I jump at any opportunity to tell others the same.

Stay positive...keep smiling...and I am sending hugs to you all. God Bless.

Amber Yard emailed this to me so I could share it with you all. Her story reflects the nightmare many of us have experienced...

This is something I will have to deal with for the rest of my life and my nightmare started March of 2012 with a trip to the ER on a Friday. We just lost our house and was in the processes of moving. So every time we went back to the house to get something more, bruises would pop up. My whole left arm was black and blue from moving the fish tank (75 gallons) and under my butt was the impression of a tailgate. 

I was in the ER with no insurance and with platelets at 7,000. I was covered in bruises all over (I looked like a punching bag with hematomas on my upper thighs).The ER did not give me platelets or IVIG's (since I have no insurance) and sent me home. I could have died that weekend, and that is my reality. Platelets are suppose to be at 150,000 to 400,000.

I had 8 rounds of a chemo (which made my hair dead loss like crazy, so I had my husband shave it for me). It was a drug called Rituxan, and up to 100mg of Prednisone a day. My platelets last year topped out at 105,000. It is a roller coaster, up then down, I am at 32,000 as of last Wednesday.  I am with my 2nd Oncologist and I don't know what is next. My medical bills have topped out so far at $300,000 and that was due to all the chemo.

Went last Wednesday for a CBC and had a good feeling it was in the normal range. The next day I got the CBC back and I was not even near normal, under 50,000. Once again I am back in the danger zone. Since this all started I've been in pain and I work full-time and my husband is a full-time student (he keeps saying he will drop out and get a job (that is not an option, he is so close to finishing school). I worked, with the chemo, I really couldn't afford to take off. The stress of all of this is taking its toll on my husband and myself. I am keeping my fingers crossed, that is all I can do and not think to much about it.

I have been tested for everything under the sun and I feel like a pin cushion. We lost our house last year due to cut backs at work (at the same time I was diagnosed with I.T.P). We also sold almost everything and now we sleep on an air mattress. The only thing we have is each other and our 2 small dogs. They always helped when coming home from Chemo. But if it wasn't for the support of my husband I don't think I would have made it this far.

The end of May 2013, I was hospitalized with a count of 14k. I stayed the weekend and got IVIG's, that got my count up to 105k. A week later, I went for CBC and they had already dropped. I was put on Promacta for 32 months and my platelets never got above 40k. So now it’s August and trying N-Plate, I've had 4 injections so far and started at 14k and as of yesterday (8/15/13) I am at 35k. Every week when I get home from my injection, my 2 Chihuahuas comfort me with their warm little body's to soak up the stress. Like everyone has said, it is a roller coasted and you just have to hold on because the safety belt doesn't work.

It is still very hard to get up every morning knowing that I am the bread winner right now in my household. I wake up either in pain or more tired than I went to bed but I have to keep going. I am very lucky to have found Charity Programs in my area that have helped me with medical bills and medications. But it is still hard to live a normal life even though I try.  

Amber Yard

diagnosed 3/2012

 http://theyardson.blogspot.com/

Samuel Lollman has to be one of the most cheerful kids around. He has had ITP since he was a wee lad but that beautiful smile never disappears from his adorable face.

His mom, Julie shared their story of bruising, hospitals, treatments and determination to live a full happy life in spite of ITP....

We jokingly refer to Samuel as our million dollar baby. Being a preemie and spending a month in ICU will earn you that title.

A year after he was born there was little sign that his life started out fierce and fighting. Cruddy ventilator lungs was the only lasting sign. Samuel was  your average 3yr old who loved life and left nothing unexplored. 

The first bruising we noticed was in 2009. I remember telling my older son that he needed to not be so rough while they are playing. ( awful, I know) It was winter and the boys had been playing in some unexpected OK. snow. Later that day he developed huge bruises across his lower back that seem to get worse and spread out by the day. I was at one point even worried the school would think we were beating our child! I still never had any alarms in my head going off and chalked it up to great outside fun and a clumsy boy. 

A couple months later, I watched Samuel lean over to pick something up and barely hit the corner of his eye. He didn't even flinch and I thought nothing of it. Moments later, I look at him and there is a huge ball on the side of his eye that is black and blue. Bleeding inside his eye and blackened the other side of his face and corner of his other eye. Then the blood looked almost like it was slowly moving down his face. I had never seen anything like it! 

Finally some alarms went off. His brother was going to pediatrician the next day for a followup and I decided I should probably take him with me and just

let him take a look at his face. Our awesome pediatrician did bloodwork just to be safe and when he came back he said that Samuel had only 5k platelets and normal was 150k and above. He then proceeded to tell us that he is at risk for inter-cranial hemorrhage and that he could not rule out leukemia. He told us to head to the hospital and that they would be waiting for us. Ugh. In my head I am thinking, ok, what is a platelet? What did they do? How did a followup appt. end up with us going to the hospital fearing for our child's future? We head home to pack a quick bag and drop off our older son.

At the hospital we waited half the day and night. They gave us a diagnoses and said they were pretty sure it was not leukemia. I've never been so relieved. Samuel began his first of what would be 30 plus infusions of IVIG. The infusion lasted 8 hrs and nasty side effects followed with fever, vomiting and migraine.  

We were given all the odds and percentages for ITP and we were hopeful as the remission rates for his age were great. Only 4% will go on to be chronic as children. 

A week later his numbers were in the 400k range and our hemoc. told us she thought he was in remission. Yeah!

Two weeks later we went for a followup. I noticed bruising coming back and after a CBC, his body had already chewed through most of the 400k platelets and was down to 60.  This became a pattern over the next year. Every two-three weeks he was in hospital getting IVIG infusions. It was definitely a lifestyle change. Weekly blood draws and missing out on fun things because he was in the danger zone. As a Mom and friend, I became the most unreliable person. We could never truly make plans at school or otherwise because we simply did not know what our week would entail. 

After a year, we realized that Samuel is part of the 4% who's ITP is chronic. We explored another treatment option called mercaptopurine . This was an oral chemotherapy  pill given  to leukemia patients as a maintenance drug. Scary, but it was shown to have good results with long remissions. It would be the first time Samuel learned how to swallow a pill and he did it like a champ. He took it at night at certain specific  times. He did not have many side effects, mostly a nauseated stomach. After 4-5 months I began researching the drug and found many disturbing facts about secondary leukemia risks while taking this drug. It was not helping his numbers and his doctor took him off. 

We began discussing splenectomy and vaccinated him and prepared. We decided on doing a bone marrow biopsy to be sure prior to surgery to make sure we were not missing anything. That was tough and glad it was done. During this time we started noticing bruising and bleeding with higher counts. I would assume he was low, take him in for labs and numbers would not match the symptoms. This began a whole series of testing putting splenectomy on hold. Aggregation testing and platelet function testing were coming back abnormal. So not only did his body fight off his platelets, the ones he did have were not functioning. Many, many tests were done for months, specialized tests sending as far as as Wisconsin with no real answers.

 

In Feb. of 2012 I was getting Samuel's bath ready and I could hear him commenting on how his pee looked funny. I turned and looked and there was a stream of dark brown. It didn't even register what it was at first. You get that familiar pit in your stomach and I knew we were in for a long night. I called our doctor and she said to head to children's and they would be waiting to admit him. This began the scramble of packing bags for the hospital and getting our son Ethan somewhere. We are good at not panicking at this point, but the unknown of "what now" is what can drive you crazy.  He was in the hospital 3 days until the bleeding stopped. He had CT scans, MRI and ultrasounds. His platelet count? 80k! Samuel for sure got everyone's attention. The bleeding was from the kidney so a nephrologist was called in. Due to the bleeding, he could not do a kidney biopsy. He did other testing for kidney function that was normal. The hematologist blamed the kidneys and the nephrologist blamed ITP. At this point we were scared that we did not have a clue at what we were dealing with nor did anyone else. 

We decided to try Rituxan. IV chemotherapy was given once a week for a month. This also unfortunately did not nothing for his counts and was a very long month and rebuilding of his immune system and side effects.  I had already been researching, trying to find a platelet specialist. Boston kept coming up and before long we were headed there for a second opinion.  They were super excited to meet Samuel and the first conversation was spent discussing our approval on putting Samuel on their new study for testing. Although very insightful, our options were still limited. Both Boston and his local doctor are concerned with the possibility that there is something underlying going on that has not surfaced even though he has been tested for everything under the sun. He is an awesome doctor who I am thankful we were lead to. He has discussed Samuel's case with rooms full of oncologist / hematologist around the world who met at oncology conferences for their opinions. How awesome is that! 

So now we are in somewhat of a holding pattern. We have had to stop using the IVIG because of the chemical induced meningitis he was having. The most recent treatment he had is Winrho. It was nothing short of a nightmare. He was a very

sick little man and we had some scary moments with this treatment. 

This brings us to our current date. We will be going to consult about starting NPlate. There is positive information regarding this drug. Although I am very skeptical to keep experimenting with these new drugs. It was shortly after stopping the 6mp that he began the weird bleeding symptoms. Coincidence? I am ready to pull out his spleen and be finished but his doctors are still worried there are other issues. There is actually a test that can help determine whether it is spleen or liver that destroys the platelets. Of course this test is only offered outside of the U.S.  Why? Well there are two thoughts:

1. Not enough need for the test and the isotope that is used in the test is very hard to get and the lab has to be certified to get it which is very expensive and hard. This was concluded from a Red Cross research facility that used to perform the test but can no longer because of the isotope. We had an interesting conversation for sure. 

2. The test just is not a good tool. 

That brings us up to date! 

Who is Samuel? He is not the poor 6yr old that has ITP. He is the most happiest, energetic, kindhearted child. He takes every needle and treatment in stride and can be sick as a dog and wake up smiling. We are not dramatic in speaking with him about his disease and after three years he does not really know any different. We find something fun out of every hospital stay and doctor visit. ITP  is not who he is and to speak to and see Samuel, you would not even know he is sick and that's our goal everyday. God gives his toughest battles to his strongest soldiers and Samuel is a survivor and a fighter. 

Elaine Twohig Odriscoll shared a beautiful poem she wrote in the Facebook group,
ITP and Me.

She gave me permission to post here on our blog so everyone can read and appreciate the feeling she shares.

Today I will wake up into the unknown,

Everyday's a blessing but everyday I feel alone,

I wonder what tomorrow will bring

I pray it will be good,

Will I be bruise free or will there be Blood?                  

I know I have I.T.P but what will others think,

Even though I stand so tall

I feel so ready to sink,

I'm really tired now

I think I will lie down,

But as I look in the mirror

All I see is my Hospital Gown.

The Dream is over, I'm not free as a Bird

I'm hooked to my life saver Bottle after Bottle

And this is now my Third,

I'm in my second home, now a hospital suite for me

All the people in and out as busy as can be,

But I have things to do, my home, my job, my kids,

Doesn't I.T.P know that I have no time for this?

My treatment is over and I'm drained from day to day

I will feel much better in time or so the doctors say.

I want to run around and come and go as i please,

But I.T.P has other plans and it has me on my knees.

I can pray for a cure or a magic wand if so

I can always pray for strength and let ITP go.

So if you ever see me, don't ask me how I feel

Just know my battle is very Hard and very, very Real.

It's Movie Day

Thanks to Arnold Schwartz for this picture

I want to apologize for not posting anything for the past couple of weeks. I am back up to speed now but I do need some help.

For the folks new to this blog, we want to hear your ITP story. If you look through the archives, there are some great stories submitted by ITPers. Please add yours to it.  

Also, if you see articles that would be of interest to the blog viewers, send me a link.  
Email your stories or links to: greta799(at)yahoo(dot)com


Today is movie day.....

Keith Hart has produced a video that relates his ITP story. His sense of humor in doing a parody of the song, You've Lost That Loving Feeling  makes the viewer laugh, and also think about our own battles with ITP. Keith made the video to raise awareness of ITP and he did an excellent job of showing what this blood disorder can do to its victims. Take a look:
http://www.youtube.com/watch?v=j0VagCjU1IQ 

The members of the Facebook group, ITP and ME had a brainstorming session one day and came up with a wonderful idea! Under the leadership of Elaine Twohig Odriscoll the group made a video about ITP. The idea behind this project was to spread the word about this terrible blood disorder to the whole world.

The video features members of the ITP and ME group and sends out a message that should make everyone think about ITP. Many of you have seen this already but it is worth a second look.

Take a look ... http://www.youtube.com/watch?v=IK5slMK3_Pg&feature=youtu.be..So

Several videos from PDSA, stories from ITPers and other information aboutITP.

 http://www.youtube.com/user/PDSAorg

I hope everyone had a wonderful Christmas!

We are coming up on a new year now and my Christmas wish is for everyone to have love, good health, happiness and lots of platelets in 2013!

What is your Christmas wish? 

Comment below and let us know. If you do not have a google account, you can comment as anonymous. Thank you everyone for supporting our ITP blog and remember you are more than welcome to send a guest post any time you want!

Please share your Christmas wish....

This week's question is again stolen...er....borrowed from one of the ITP groups I am in.

We often discuss all the negative aspects of having a chronic disease but developing a positive attitude can be beneficial to our mental, psychological and physical health.

Today, I would like for everyone to list the positives of having ITP.

Some of the responses in the support group were:
     -- If I get Lupus, cancer or any other medical condition, it will be diagnosed earlier.

    -- I have met some wonderful people through medical services.

   -- Strengthen faith.

  -- Make me slow down and take care of my health.

  -- I've learned to live life to the fullest since I can't change things.

What are your thoughts? Has anything positive come out of having ITP. Please leave a comment. If you do not have a Google account, use the drop down box and use "Anonymous".

Today's question of the week comes from Stephanie Oquinn.

What is the BEST advice you have ever given/received about ITP?

And on the flip side...

What is the WORST advice you have ever given/received about ITP?

Please leave your answer as a comment....

Ros Bryan came up with our question for this week. She posted this in one of the ITP support groups on Facebook and got some very interesting responses...

 When you see your doc/specialist, do you listen to them and let them make the call or do you have ideas of your own, that you want followed, (so long as it is of no danger).  Opinions anyone???

  

 Here are some of the replies she received:

1. Keep that up! and be bossy. Polite but not reverent. Being your own advocate is the most important thing to be, you are the boss of you, ITP or not. And if your doctor doesn't like it, they can kiss your behind. Personally, I always come with a list of questions, observations about my symptoms, and when he recommends a medication I tell him not prescribe it until I get all of the information about it and then I'll approve it. I learned my lesson the hard way by taking prednisone without looking it up first. My innocence was gone fast!

My doctor LOVES it. his nurses hate it because it's quicker for them to just prescribe it, but they can kiss my @ss too!

2. At the start I used to listen because I was scared and knew nothing ..lol..In saying that I haven't been to my hemo in nearly a year! If my count is ever low enough for treatment, I will not be taken pred! so she can think of something else..other than that! I just listen..and agree and leave ..But I have no problem in asking..WHY is this what your giving me ..etc etc.

3.We are all guinea pigs. Most of our doctors don't have more than a few ITP patients and they are all different, respond to different meds, are symptomatic at different levels. Mostly I think it is a cooperative effort. The doctor has ideas. I have ideas. When necessary, we come up with a new plan.

4. I agree wholeheartedly that's it's a cooperative effort and input should come from both sides. You're both working together for a common solution that will enhance your quality of life. You're paying for medical knowledge and advice, and in order for that advice to be effective in your specific situation, the doctor needs to have your input

5. I am feeling like I need to be more bossy now. I just listen to the dr and do whatever she says. But now she is sending me to the neuro because of the fatigue. And I have already been there for it last time and they did an emg and there is nothing wrong. We thought it was just from the pred but now I have been off it since January. My count from Thursday is 53K. At this point she is just waiting for it to bottom out before I even go back to see her.

What do you think...Do you let the doctor make all the decisions or do you voice your ideas and suggestions? If so does you doctor listen?

Please leave a comment below and let us know what you think...

What Do You Think?

For the past several months, we have had posts written by ITPers telling his/her experiences with ITP.

This week is going to be different....

Below is a question that I'd like to have everyone comment on. Just click the comment icon and tell us what you think.


How does ITP affect your relationships with your family and friends? Have you discovered that some of the people in your life have "disappeared" or have they been supportive and try to understand?

Do you have a question you want addressed? Please leave it in the comments. Thanks for supporting our blog!

A Voice for ITPers

Dale Paynter is our special guest today. He has been very instrumental in getting the word out about ITP.

Dale started an ITP Support Group for the Toronto area in Canada and has done a number of interviews with the local media. He has also participated in the PDSA conferences here in the USA.

Hats off to this wonderful man and all the great work  he has done for all ITPers.

I guess it is my chance to add my mild little story to Greta’s wonderful blog – should be doing something while we are sitting here at the Hospital getting IVIg. Those who know me agree I can ramble on, so you might need to grab a drink and/or a snack to get through this….sorry.

My low platelet condition was discovered in the spring 2010 in an annual company medical (70 at the time).  My numbers continued to drop into the 30s and I was referred to a hematologist that same fall. We tried Dexamethasone to see if that would raise my numbers to no avail. She then conducted bone marrow tests and specifically found I have a protein clone that is attacking my platelets.  It is a bit unsettling when the first time you hear of a rare condition, you are told you have it. A great deal of time was spent scouring the internet to find absolutely everything about ITP.

Before my referral, I did a lot of thinking about a specific cause of my numbers. Looking back at old medical records showed 400 in 2007 and 150 in 2009. I had a bruising from a hockey injury about the same time as my 2010 medical – was this a cause or a symptom?  I had a large weight loss three years ago; did this trigger something?  I was a chronic worrier - is ITP stress induced? I have done a lot of youth volunteering with some tasks requiring long, late hours at certain times of year – did I burn myself out?   I may never know if it is one thing or a combination of things; many of us never will.

My numbers were somewhat stable in the 30 range without treatment, but I was concerned about an upcoming winter golf vacation in South Carolina with my 20 year old son. To be in another country (even the United States) with a different medical system was a concern should something happen. My hematologist suggested that we try IVIg to see how that would work, even short term. This was covered here in Canada, so we gave it a try. Four days put me back over 350 – did we the find the silver bullet first time? As we all know, IVIg is only temporary, but still we had something that worked if we needed.  That took so much off of my mind.

My haematologist has suggested that I would be a good candidate for a splenectomy, but that talk has been less recently.  I visited a friend who is a local naturopath about a year ago - we found a number of food allergies and also diagnosed Candida.  We successfully conducted several treatments to eliminate these, but this did not improve my platelet levels.

Over the past 20 months, I have had CBCs every two to three weeks, and IVIg for two mornings every four to six weeks when my numbers have been below 30 (lowest test ever 15). I have zero side effects from the treatments, and get really strange looks from all of the nurses when I say I am heading back to work.  Sometimes I wonder about trying some of the other treatments, but many are not available, approved or covered here in Canada.  We will be working on changing those kind of things up over time.

There are some things that we can obviously no longer do (play hockey) and we need to pay attention to tasks at work and home, but we are still active. I am volunteering with kids hockey (managing…off the ice), biking in the summer and curling in the winter (it is Canada).  I own golf clubs, but they aren’t very good.

-----------------------------

Back when I was first diagnosed two years ago, my hematologist gave me a small brochure that has ultimately changed everything and given me direction now that my sons are grown and off to university.  Many of you know of my deepening interest and involvement with the Platelet Disorder Support Association in the US.  Without being on a soapbox here, I can’t say enough about how PDSA and the people there have helped many of us with ITP.  My first conference in Boston in 2011 was magic. It was just so great to for the first time meet and talk with people live who have the same condition. 

I now facilitate one of two PDSA support groups in Canada, drawing attendees from all over the Greater Toronto Area. I have completed television, video and newspaper interviews in Canada and the US, as well as had the opportunity to speak at the 2012 Conference in Denver. My sights are set on establishing a ‘new’ regional fundraising event, and getting charitable donation status here in Canada.

Social networking has been a godsend in learning how many others really have this, and how other people have been treated and how they have responded, favourably or unfavourably.  I can’t imagine how difficult it would have been to be alone with this. I can’t say thank you enough to my worldwide ITP family.

Once again this is not about me. I have been able to manage all of this; I am fortunate that I have few (if any) of the other physical symptoms or medication requirements of a great number of the people I have met worldwide who have ITP.  It is SO important to get our word out, so our numbers know they are anything but alone.

My wife and I consider it lucky to have found this when we did and that I am being looked after before it could have been much worse or even too late. It has corrected some priorities.  

See you in Washington in July.

DP

A "Normal" Life with ITP

Alison is from the UK and her son has ITP. He is a typical teenager and does not want to be different from all his friends. They have been very fortunate in that his wish to be 'normal' has been a reality. 

I 've been really touched by reading the stories on this blog for the last couple of months.  But I have sometimes found them a bit scary, so I thought it might be useful to show a less worrying ITP case.

We live in the UK, and my son was diagnosed with ITP aged 10 after we discovered he was suddenly covered in bruises one Saturday in May 2009.  We were told to take him to Accident and Emergency, where 4 hours later we finally got to see a doctor (those in the UK will probably recognise this as a typical Saturday evening at their local A&E Department!).  He was admitted for the night, and in the early hours of the next morning, a doctor came to tell me he had a platelet count of 5 and they thought he had ITP.  I was told it would probably go away quickly, not to worry too much, but he would have to take care for a few weeks.  Doctors in the UK generally treat ITP in children on the basis of symptoms and not counts - my son was fortunately only covered in petechiae and bruises with no active bleeding at all and so he didn't receive any treatment. The next morning his count was 9 and he was discharged at lunchtime and we went home to watch and wait for things to improve......

His count didn't go over 20 for the next six months so he had a bone marrow test - very uneventful, he was cycling his bike down to school to pick up his little brother a few hours later.  It didn't show anything abnormal. After about 6 months his count suddenly went up to about 120 and we all thought it was over ............ for at least a few weeks until it plummeted to under 20 again!  

This was followed by a fairly good year countwise - counts went between about 5 and 50 but they were mostly around 30.  About 18 months in though, his count went down to about 10 and it has mostly stayed somewhere between 5 and 20 ever since.  He still has very few symptoms - petechiae on his legs if his count is below 20, bad bruising and bleeding gums when he brushes his teeth if it is below 10, and an occasional heavy nosebleed. He's had a few accidents and sports injuries where ITP complicated things but nothing serious. He tried steroids for a few weeks after a run of nosebleeds (didn't do much) and IVIG once (worked, but gave him the headache from hell).  If he has a few nosebleeds now, we give him a couple of days of tranexamic acid which seems to work.  Fingers crossed, he is about to start the Eltrombopag trial, and he hopes that this will allow him to play rugby.

I sometimes read about children (and adults) with ITP who have very restricted lives and a lot of medical intervention. I feel very lucky that, three years in, my son has a very normal life. He sees the haematologist every couple of months and misses school to attend these appointments, but otherwise has missed only a couple of days of school due to ITP in the last 3 years.   I think his doctor is very relaxed compared to others that I have read about and he is happy for him to do pretty much anything if his count is over about 20.  This helps to keep things normal and keeps the worry to a minimum. The doctor has told him to limit activities that may result in head injury, but he is a typical teenage boy and only hears what he wants to hear! 

I 'think' he has understood the message on some of the more risky sports and activities, but I have also resigned myself to the fact that he does pretty much what he wants to do otherwise, and just doesn't tell his father, myself or the doctor about it.  It probably helps that we keep restrictions to the absolute minimum, so he knows that when we say no, it really must be too risky.

He plays basketball, tennis and football (soccer) with our permission, although when he is particularly bruised he doesn't play competitive football matches.  He goes to scout camp where I am told he climbs trees with the best of them.  He playfights with his brothers and friends and he rides his bike (with a helmet on if I see him first!).  He goes paintballing with friends as well as and bombs down hills on a sledge on the rare occasions that we get enough snow. We have just been to a theme park where he rode all the most scary rollercoasters and the photo above is him jumping off a cliff into the beautiful Greek sea a few years ago - his count was about 20 at the time.

Through reading other people's ITP stories, I realise how lucky my son is, and I am thankful every day that he only has ITP.  Every time I take him to the haematologist, I think that my son must be the 'wellest' person that he sees - I even feel like a bit of a fraud taking him at all!  Yes, ITP is a real nuisance and a bit of a bind sometimes, but that's all it is at the moment -  in fact, my son tries his upmost to ignore it! I often hear people describe themselves as ‘fighting’ or ‘suffering from’ ITP and I don’t think those are the right words for my son at least – ITP is just something he has, a bit like I would describe him as having brown hair, or beautiful green eyes!

With luck and a following wind, I am hopeful that it will remain that way.

 -

Zane's Story

           Ronda Green is sharing the story of her young son, Zane with us today. In the picture to the left, the youngster jumped off his bunk bed and hit the frame of his brother's bed. That led to his first ambulance ride and CAT scan. Zane has had a rough road with ITP but he still has a beautiful smile on his face...

        Zane was born May 10, 2007, in Lawrence, Kansas. Thinking he was a just a normal active 2 ½ year old, we thought nothing of his bruising.  In November of 2009 after noticing bruising on his legs he was taken to the doctor, and had a CBC done. 

            The next day I (Ronda) received a phone call from the doctor and was told Zane needed to be taken to the Cotton O'Neil Cancer Center to be seen by a specialist because his platelets were critical at 12,000.  A normal range is 120,000 to 400,000.  Dr. Jakica Tancabelic, M.D. diagnosed Zane with Idiopathic Thrombocytopenic Purpura (ITP).   The symptoms of ITP are similar to the symptoms of other diseases that can cause platelet counts to drop.  ITP symptoms can include, small red dots on the skin caused by broken blood vessels (petechiae), purple spots on the skin (purpura), large bruises, especially on the arms and legs, resulting from seemingly minor bumps (ecchymosis) and bleeding from the gums (gingival bleeding). If a person with ITP has very low platelet counts, it is possible to have internal bleeding or, in rare cases, bleeding in the brain. 



Zane's first stay in the hospital for
IVIG and steroid treatment.



         He was sent directly to Stormount Vail for intravenous immunoglobulin (IVIG) treatment.  That was the first of many 3 day stays at the hospital.  The first day consisted of the IVIG treatment and his first shot of IV steroids, very harsh and very hard on his little body.  The second and third day in the hospital was to watch for dehydration, and the 2^nd and 3^rd shot of IV steroids.  This picture was the harsh reality that he may never be able to be a “normal boy”.

            After several IVIG treatments, Zane's body quit responding to the IVIG.  Therefore we decided to use the predisone treatment.  After 9 months of predisone, Dr. T (as we call her) decided it was time to take more proactive step.  In November of 2010, Dr. T sent Zane to a specialist to consult for a splenectomy, which is a treatment as well for Chronic ITP. One of the spleen functions is to remove old red blood cells. In most patients with ITP, it is the main site of platelet destruction.  In chronic ITP, surgery to remove the spleen is an option if the platelet count remains too low or doesn't respond to treatment. Only about 10 per cent of children with acute ITP have the operation.  The surgeon said that Zane had a spleen and mini-spleens, therefore we were excited this would “cure” him!  Zane also has to  take a lifelong antibiotic to prevent infections.  Zane came through the surgery with flying colors, but after a week his platelets went back down.

            In May of 2011, Dr. T thought it might be a good idea to get his tonisles removed because of infection.  Well, the surgeon took out infected tonsiles and the night of his surgery we had to rush him to the ER because his throat was swelling shut.  He spent 3 days in the hospital for a simple tonsillectomy. 

            Since May of 2011 we have tried to keep Zane out of the hospital and continue bi-weekly blood draws.  If Zane gets a simple cold or infection his platelets drop, which caused him another hospital stay in February, which consisted of IVIG and steroids.  This instance Zane's gums started bleeding, which is not a good sign for ITP patients.  It is kind of like a few months ago when Zane bit his tongue and it bleed for 24 hours.  His platelets were 87,000 when he left the hospital and were back down to 20,000 one week later.  

          Dr. T has now determined that since Zane cannot stay out of the “critical range” that we should consider the treatment “Nplate” (http://www.nplate.com/).  Nplate® is a man-made protein medicine used to treat low blood platelet counts in adults with chronic immune thrombocytopenia (ITP), when certain other medicines, or surgery to remove your spleen, have not worked well enough.   We have to wait 30-days to see what the insurance company is going to say about the Nplate treatment, because of the cost.  We have been told that the Nplate treatment will run approximately $3,000 a week.  The Nplate treatment requires weekly CBC and the Nplate injection for an unknown amount of time, it all depends on Zane and his reaction to it.

Zane's biggest dream right now is to play baseball, he talks about it everyday, but the only way Dr. T will let him play is for his platelets to be above 50,000. 

Pure happiness.... Zane's platelets rose high enough to go for a ride
with his brother, Wyatt.

What a couragous kid! I'm looking forward to seeing Zane on TV playing professional baseball.

Greta :)

You may die from this, but don't worry, it's harmless - Part II

  

   This is the second part of Arnold Schwartz's ITP roller coaster ride. If you did not catch part one, just scroll down to last week's post.

   

Chapter II

I continued the rollercoaster ride of cbc's, but no treatment even after moving here to Florida in 2000. I met,and married my love. A true Florida cracker girl in Martha. A no frills, no nonsense country girl with a heart of gold, and a temper to boot. When she met my grandmother (from Moira,County Down,Ireland), Grandma whispered in my ear," She's a good Irish girl." That was all I needed to hear.:) Grandma approved. But Martha like my best friend, didn't approve of doctors. She held strong to her family's beliefs.

      After seeing my first hematologist here, he recommended spleenectomy asap. Gave me the prednisone prescription to bump up my platelets, for surgery. Confusion continued as he told me I had a disease that could kill me.When I told him I never received treatment, he told me,"That's ok.It isn't serious. Acne is more serious then ITP." I shook my head and replied, "But You just said it's deadly."

      "That's right it is, but no worse then acne. Don't worry bout ITP,"he replied. Confused I said," So I can just walk out that door cause it ain't serious?" He got mad, and said," You are a damn fool if you think you can walk around untreated with this deadly disease,you will die from this untreated." I walked out utterly confused...Maybe Martha's family was right about the medical establishment...

In 2005 my employers health insurance changed, and I was required to get a once a year check up at the least. My new pcp was an amazing woman from Texas. She was shocked I wasn't under the care of a hematologist. Two dreadful cbc's later, she held my hands, and I saw tears in her eye's. "If you where my brother, I would drive you right now to the hematologists. You have a serious deadly disease, Arnold. You need medication." My people pleasing kicked in and I went to see yet another hematologist.

I spent the next 3 years riding the familiar roller coaster, of up and down cbc's. Random nosebleeds,bruises, and petechia. My treatments would start, if my next test was lower. But when the next test came, I was back over 50K. This doctor would tell me never to treat until later in life. That the steroids damaged the liver. The spleenectomies rarely worked. And the IVIG was too costly to my employer. Still confused, I rode the roller coaster ride. Until 2009,when my hero and best friend became a victim to cancer.

My mum was diagnosed with stage 4 brain, lung and colon cancer in Nov 08. A spot was found on her lungs back in 07, but she refused to go forward, or tell anyone....In 09 she passed away (I could write an entire book on this part...but I am not ready to go there...) My platelets average began to fall to 17-30K. My oncologist, amped up the tests to weekly, but still forbid treatment, telling me he had patients with counts under 10K, that he will not treat. I assumed the low counts where due to my mum's passing, and would rebound. But they never did. Maybe I never got over the guilt of leaving home, and breaking her heart? I still have family to this day, remind me of her broken heart. Was I to blame for her death, like I was for my dad's drinking? Maybe I deserved all this because of the hurt I caused them?

In late 2010, I began to have bad headaches. Really bad ones. Dizziness at times. My pcp doctor felt it was from my high blood pressure, that I was fighting for years.(just like dad). But he ordered a MRI, just to be sure. The MRI did find cysts, and polyps in the front nasal cavities. Very close to a brain membrane, which he said are benign. But the MRI did find evidence of a brain bleed in the back of my skull. Sometime during 2010, I bleed there. "But Arnold,don't worry about it." I replied, "But that's how my father died..." After being told it was just a coincidence, I drove home taking 2 hours, wondering what to do...Confused...

My oncologist moved to a new office in 2011. Oddly enough his views on treatment have changed. The wait and see attitude, was gone. Replaced with treatment options, including the new N-Plate drug I had brought up 2 years ago, but was shot down as too risky. Showed him the MRI results,and he looked at me and made me cry, "Arnold you have fought this for too long on your own. It's time you get some help." I didn't bawl, but years of sitting in these offices alone, walking home alone, being scared alone, made tears stream..." Of course his pretty nurse comes in, and I go into my clown routine for them all. It's what I do best I guess.

When my counts flirted with 20K, he applied for N-plate, but my employer refused. Only Prednisone, ivig, and splenectomy would be covered if proven. My doctor was furious at my employer. He ordered Prednisone for me after negotiating with me for a short term trial. For the first time in my 16 year journey I would join the Prednisone alumni. I was relieved and scared outta my mind at the prospect, of finally taking the fight to the invisible opponent inside me.

I quickly discovered all the rumors of Prednisone to be true, the incredible rush of energy, the insomnia. I only got 2 hours sleep in 3 days, but was still wired all day at work. Never yawned once. Hunger pains tormented me the entire time. Massive headaches. My blood pressure was through the roof. My home testing machine broke the day I got a 195/115 reading. However my fight with blood pressure, gave me the wisdom to up my potassium intake, to fend off the sodium retention qualities Prednisone is famous for. I ate more bananas, apples, grapes and almonds. That helped to keep the Blood Pressure scare at bay.

The incredible joy was amazing when after the first week, my platelet counts rose to 159,000!!!!! I was sooo overjoyed, I hugged the medical assistants, nurses, doctor, and anyone else in the office. I asked the doctor if I could ride horse, (A dream of mine to do, but not allowed cause of the ITP risk). He said if I get another decent count, I could, as well as ride the roller coaster rides with Martha again. I was on a unbelievable high...until my next week of tests.

      My counts crashed to 50K, as the ITP flexed it's muscles. I was crushed, and confused. My doctor still ranted about my employer. He really wanted to try N-plate on me. I was slowly weaned off the Prednisone, as he said he doubted it would work, if my ITP was that strong. He would reapply for N-plate. I walked out the door in the comfortable confused state I knew so well...

What I discovered along the way, was that I was never really alone. When I laid on the stretcher, for the bone marrow biopsy, for the first time in many years I prayed. I prayed to my heavenly creator. I didn't pray for a cure for me. I prayed for him to look after my family, if this turned out bad. I began to pray more for my family then later friends I knew who where hurting. I began to have a very personal, relationship with my creator. Yes 99% of the time Martha will not go with me. I respect her views. Yes, none of my online support group is there in the waiting room with me physically. But my heavenly creator is. I don't feel alone when I remember that.

I have had an incredible opportunity to be touched by people with ITP along the way. In the early days there was no internet in my home town. Only in late '99, did internet cafes pop up. That is where I discovered ITPPEOPLE.COM. It was an incredible moving feeling to see other people talk about ITP. If it weren't for Joan Young, and her relentless effort to get pdsa.org going, I think my battle would be alot different. Through the forums, I met hero's of all ages. Casey Grant is a hero to me, always will be. I met Pamela Ford, who lobbied hard for N-Plate trials, after her son battled his much stronger ITP for years. I had the privilege of meeting Pamela and her family the day before I had to leave to see my mum before she passed. An amazing lady.

During my dance with Prednisone, I was invited to a special ITP group on facebook. Say what you will about Facebook, but it has changed everything about the way I face this journey. I have met so many that are worse off then me. Some on steroids long term. Some on experimental drugs. Some having thier spleens removed. This all puts things into perspective for me. When I think about feeling sorry for myself, I think of those around me worse off. My creator gave me the ability to look around. I do, and it helps.

I have met many amazing fellow ITPers here. Linda, who from day one is like an aunt to me. Dale, who grew up in the same part of town as me!! Though he went to Thom Collegiate...Yuck!!
Elaine who like my Grandma comes from a beautiful island...She reminds me sooo much of Grandma's wit,and wisdom:):) Jan, Tom and Hap make me laugh on days I feel like crying. I know I have missed many, and I know to some this is silly. But your unending understanding of a absolutely Idiopathic disease/disorder/condition is so comforting.

Chapter III

I'm just getting my second wind. Someone ring the bell. It's time for round 3!!
May GOD bless you and yours for reading this.