Hope For Bleeders

   
   When I first started this blog in December of 2008 I had no idea what it meant to raise a child with hemophilia. I didn't even want to talk to anyone else with hemophilia and I only wanted to stop time and keep him exactly the way he was in that very moment.  I was scared and alone but also knew that my responsibilities were much bigger than my own scared-ness and alone-ness.  What doesn't kill you makes you stronger, right? I had no idea how true that really was. What it meant not only to dig deep within myself but to find strength enough to share with my family and my little bleeder baby.

Today I am not only active in the hemophilia community but I recently became President of the Board for the Bleeding Disorder Foundation of WA. Never in my dreams or plans would I thought this is where my passion would live and be. I found safety in numbers after that first time at Camp -Ivy, the local camp for bleeding disorder families, and I realized that I was able to heal myself by helping others. I know what it felt like to be a new mom and have a newly diagnosed baby. The unknown of what that meant was incredibly overwhelming. In my heart of hearts I didn't ever want another mom to feel alone in that place again.  I wanted to make sure that all new families in the bleeding disorder community had a soft spot to land. A place where they could feel safe.

But then I learned about how lucky we all were.  How lucky our children were to grow up in a time where treatments allowed them to live normal lives.

I learned about the bad blood of the past and of the pain and suffering and death that kept the older bleeders feeling scared and alone and unsupported.  I learned about the daughters who saw what bad blood did to their brothers and uncles and fathers, who were now having children with hemophilia. A kind of fear that only post traumatic stress can claim and although their bleeder babies would have a superior quality of life, the fear still sat in their hearts and lastly, I learned about the women with bleeding disorders.  I found out I was one of them. Blood sisters who over the last five years started sharing their voices and supporting each other to have better treatment and be acknowledged not just as carriers but as a woman with a bleeding disorder. women who deserved to live better quality of lives, who wanted to have children and who needed to be diagnosed so that in an emergency they would not bleed to death.

All these people inspired me to do more and to find support among others as well as be the support. The Bleeding Disorder Foundation of WA was my catalyst. It was my inspiration to achieve something I didn't even think existed in me but it was a group of people who were of the same mind. Needing support while helping others with bleeding disorders. The first event our family ever went to was a holiday party and as I looked around the community center of all the families coming together I knew there was so much more that it could become.

So here I am in 2015 and so proud to be a part of something bigger than I ever imagined. In an age of technology where word spreads like lightning. Where that technology is ever changing as is science and medicine. In just over eight years ago, before my son was born, the world of bleeding disorders was changed too. New factor products and prophylaxis therapy were making the lives of those with bleeding disorders safer than ever before.  Today I can see that Bleeding Disorder Awareness Month has taken on a whole new meaning compared to what it meant in the time of bad blood. The bleeding disorder community has now been propelled into a renaissance it has only just begun to experience.

Bleeding Disorder chapters have also been changing in this rebirth and I am so proud to see the Bleeding Disorder Foundation of WA changing faster than ever! A grassroots organization that started with some brave dedicated parents and a camp for bleeders has transformed into a foundation supported by both bleeders and non- bleeders around the state! As Board president, with my fellow board members and staff of the BDFW, we are dedicated to pushing the envelope in ways we couldn’t have imagined five years ago. We strive not only to bring hope and support for those in need throughout the bleeding disorder community but we are also invested in bringing awareness to others through our media and advocacy campaigns.

 As a mother of a young son with severe hemophilia I know what it feels like to be in that dark place with my son and his bleeding disorder.  As a woman with hemophilia I know how it feels to be alone in my bleeding episodes. We are not alone. Bleeding disorders affect family and friends alike. They affect friends at school when the child with hemophilia gets hurt or is out for hospital appointments. They affect spouses when joint bleeds and arthritis or menorrhagia keeps their loved one from living life to the fullest. It even affects family and friends living miles away, leaving them feeling helpless, not able to offer support when it’s suddenly needed, but the BDFW believes in the renaissance of bleeding disorders. We believe in the hope. We believe in making a difference to ultimate change lives.

The BDFW has propelled itself forward to have the voices of bleeders heard. We have walked the halls of the state capitol to advocate for better care. We have shared the voice of bleeders on radio ads and we have shown the faces of bleeders in television ads. We share Hope for bleeders in this renaissance so that others can understand what it means to have that HOPE too. Please share #hopeforbleeders with me.

Heidi Forrester

Bleeder, mother of a bleeder, daughter of a bleeder, BDFW Board President

Jumping into the BIg Pond

     My bleeder baby started kindergarten in September. For most families this is a wonderful, exciting time where you and your child are ready for independence.  They are learning and growing and exploring and it's a milestone you always remember.  It was some of those things for us but mostly I was dreading  my bleeder baby jumping into the big pond.  Hemophilia is a life long chronic condition but it is never constant.  There have been times in the last 5 1/2 years where it was right in our face very minute of every day but there have also been times where we've actually really forgotten about it.  Preschool has been one of those forgotten times.  It was a scary transition but it was still a small fish bowl.  A couple of teachers, less than 20 kids on the playground at a time.  Everything was just so supervised.  He was visibly cared for in a way that I could relax knowing he was safe.  For whatever reason or for so many reasons kindergarten is a jump into the big pond.  Practically like tossing him into the middle of the ocean!  I felt a little out of control with the thought of hundreds of kids, dozens of teachers, random parents helping on the playground.  Okay, so maybe I wasn't scared of the kindergarten classroom.  That was sort of like preschool, right?  I was really just scared of the playground.  The span of cement and yards of hard dirt mixed in with plastic covered metal, I mean, play structures.  It just seemed like a place that had so many variables for injury.  Injuries happen and maybe even THAT wasn't the scary part.  It was the part where injury could happen and the adults supervising wouldn't know what to do.  Or the part where the adults knew my bleeder baby had hemophilia and they didn't let him play.  It's a very scary, confusing mix of emotion.  Let him play but stay close by in case he falls, but don't let him know you are staying close by in case he falls because he needs to be treated normally, but he has a severe bleeding disorder.  Got that?  But he'll be fine because he's on trophy, but he could still get hurt and have a possible bleeding episode so call me if he falls anyway.  Just in case.  Sigh.  I held my breath.  For a week.  At home by the phone from 8am until 2:30.  And somehow, like every other hemophilia related milestone that we've worked through, you know what?  He is okay.  He made a friend, he colored some stuff and he played on the playground.  Does he go to the nurse's office a bunch? yeah but weirdly he thinks it's cool.  It's become his safe place and that's okay too.  So while I was scared of throwing him into the big pond, I couldn't stop him from doing it.  He's just a normal kindergartener.  I still have 6 years to worry about middle school, right?

5 years

My Bleeder Baby is almost 5 years old.  No way!  I figure the 5 year mark is a good time to reflect on what hemophilia has done to our family.  When at 4 months old we were told our second baby was going to live his life with a rare, genetic bleeding disorder that most people knew nothing about.  There are so many memories of the past five years both good and bad.  All of which I never thought would happen to me or my family.  I remember finding that first ugly, swollen bruise.  It was shockingly purple against his perfectly creamy white skin.  Something that motherly instincts told me should not be there.  Before I even had him dressed for the doc appointment, my best friend and I were discussing where the hell it came from.  Over the phone she says, "well it's not hemophilia." Just hearing that word and knowing even across the phone she said the word that stung my heart.  As any good friend, saying your greatest fear out loud in hopes that it just won't be true.  I remember the pediatrician being as shocked to see plum sized bump as much as I was and feeling sick to my stomach when outside the office door I could hear a second doctor question the motives of his two year old brother at home.  I think I thanked our pediatrician every visit for four years for believing it to be something other than abuse.  I continue to silently thank her whenever I hear of another family whose experience involved CPS or even jail time.  I remember the first hospital stay, waiting to find out what blood work would reveal.  Hoping the multiple pokes to get blood would be over and we could just go home.  Sadly this was just the beginning.  That first night the baby and I sat in the dark corner of the hospital room.  Like a frightened animal in unknown territory.  I held the baby the entire night, even after my arms fell asleep afraid to let go and wishing I could put him back in my body where no harm could come.  My husband left us here to take the two year old home but the look of PTSD on his face told me it was better to keep him occupied.  He hadn't been to the children's hospital since he was a kid and he was on the very floor where his sister died of cancer.  Sitting in the dark with my sleeping baby I knew this part was all on me and hoped the hours past quickly.

Over the next year and a half I think I lived most of the time outside my body.  I kept thinking at some point I would wake up to my "real" life.  I knew my baby was a bleeder but I still didn't understand what that meant.  At 6 months old his inconsolable crying would have me on the phone to the nurse on call asking if he could be bleeding somewhere.  I was always on pins and needles, frantic with worry that he was hurt and I didn't know it.  Hemophilia absorbed my natural instincts.  I scrutinized his every cry and movements and automatically thought "bleeding" before any other natural baby condition like, tired, hungry, or just fussy from being a baby.  every diaper change and clothing change caused me to scour every part of his body for some abnormality.  We were afraid we would break him if we touched him to firmly.  Taking him places, my husband would find reasons to tell people our baby was "very sick."  He worried about whether we would continue to live our current lifestyle or that the care of hemophilia might bankrupt us.  I was just trying to keep two kids alive.  After finding out I was also a carrier as well as my mom, he questioned whether the family knew and had kept some sort of secret even thought it was clear know one could have known about this rare disease.  It was a year into our life with hemophilia that I started coming out of this black hole and it was another six months before we both began to breathe again.  The first 18 months were filled with an emotional roller coaster of events. Almost monthly trips to the ER that included multiple traumatic pokes for the baby and all the mother's strength I could conjure up to wondering if our marriage could actually survive this upheaval.  All while trying to keep the life of a precocious 3 year old in it's own creative balance.  Yes, it was at the 18 month mark that I found a stride in my inner strength.  I learned everything I could about hemophilia.  I joined groups, we went to camp and I got involved.  I wanted to help others navigate their dark hemophilia hole as well as heal my own.  I wanted other mothers to know they are not alone. It was also at 18 month turning point that things had to change or I would break.  The ER trips were not getting better and the pokes were getting harder for all of us to bear.  The decision for a port came when a trip to an unknown ER brought so many pokes that I stopped counting after 8.  Watching the nurses strap him to a board was the last straw.  Within weeks his surgery was scheduled.  Another set of unknown circumstances were upon us.  As I handed my sleepy little toddler over to some stranger, I mean surgeon, my heart fell out of my body and lay flapping on the floor like a fish out of water for the next 3 hours.   Seeing his scar of imperfection only brought more determination.  Hemophilia is not going to halt our lives.  Amazingly that magic little button under his skin changed our lives.  We could breathe again!  He wasn't going to break after all!  The next milestone didn't happen until preschool.  Such an exciting time!  I sat down to fill out the paper work and looked at the emergency information sheet.  My hand started shaking and the page blurred before my eyes. Was I really leaving my bleeder baby's condition in the hands of some random people who don't even know what hemophilia is?!  Would the ostracize him at recess?  Would they know what to do in an emergency?  It felt like so much weight to bear on a mom's heart, yet I managed a deep breath and got through it and sent him off with a smile and all the instructions I could give.  I drove off and parked around the corner and cried.  In the end, almost 3 years of preschool have gone by and not once did the school call for an emergency.  Did he get hurt on occasion? Yes, but no more than any other preschool kid.  Did he get to use scissors and go down the slide?  Heck yeah!  Looking back on the last 5 years, the journey has at times been overwhelming, but I have chosen to stand firm and look hemophilia in the eye and say, bring it on!  As my little bleeder baby no says, in his big 5 year old voice.  "because Williams do what Williams do!  Happy 5th birthday my little bleeder.  I wouldn't want you any other way.  No let's go get some bacon band aids!

I Got The Look

     The other day at our local YMCA, which I love by the way, I got "the look" from a little girl's grandma in the pool.  My bleeder baby wanted to go swimming before lunch so I happily complied.  Off he was with his Thomas the train squirters bouncing and chugging through the shallow pool.  U found my place along the edge with the other moms and smiled at such gleeful splashing and ease of making new friends.  Then I got "the look."  I know it was the look because the grandma in the pool was talking and smiling to the other moms on each side of me.  I was somehow invisible.  At first I brushed it off thinking, naw, I'm reading into this, but then I glanced over at my little guy and saw his leopard spots.  You know the ones hemo families.  Now, Will has been on a regular prophy schedule for a little over 2 years and I'm pretty dedicated, but on occasion I slack off and we get busy.  A mom is not perfect and I forget a dose here and there.  This time it was several days but he was healthy so there were no worries until "the look" and the leopard spots.  It had been quite awhile since I had such a stare or look by an outsider but I sure did notice it!  William had several bumps and bruises but nothing out of the norm for a hemo kid unless you are unfamiliar with a hemo kid, then the hemo kid looks like his parents grab him to hard or whacked him with a stick.  Of course none of this happened.  So I knew this lady was giving me the evil eye and ignoring me to the point that I almost said something.  Letting her know my bleeder baby was just that and that he was well cared for, but then as I watched all the kids, including her granddaughter, playing happily together, not caring, I decided, let her think whatever she wants.  I know the truth and if she really cared she would ask about him instead of judging me with her beady little eyes.  So, that was that.  Kids played I watched and smiled and made a mental note to infuse my kid when we got home.  I'm glad kids don't notice.  They are awesome!

Hemophilia Awareness and politics

     In the last few weeks I have been learning the art of lobbying.  Meeting with political representatives and senators in Washington state in hopes that they will support the greater good of the hemophilia population.  National Hemophilia Awareness month just began and today my little bleeder baby and I went back to Olympia for important business.  We are hoping to convince those speaking for the people will protect people with bleeding disorders by keeping them exempt from the medicaid formulary.  Being exempt means they and their doctors will be able to choose what medication is best for them.  Without being exempt means the state would choose the drugs for them.  This would most likely be the cheapest and THIS would most likely mean plasma products.  The hemophilia community has a terrible history with plasma and plasma products.  The tainted blood of the 80's and 90's infected the population with HIV/AIDS.  We do not want a repeat.  We should get to choose.  So with the backing of Senator Jeanne Kohl-Welles, we are hoping to keep the choice with the people.  In the process, we are educating and bringing hemophilia awareness to the political arena.  We will be heard!

The Sweet Spot

   

     A few weeks ago I had trouble accessing my son's port.  He's had it for 2 years now and we've had relatively little problems.  The first day I hit metal and gave it another try.  By then Will was nervous and crying so we let it go.  The next prophy day came around and the same thing happened.  I hit metal.  I couldn't find the sweet spot.  Those of you with port experience know this spot.  It's the bulls eye soft center you pierce with the needle that tells you you're in.  After day 2 with no luck I was not about to throw the factor away again and I could see a nice hematoma growing under Will's skin so off to Childrens' Hospital we went.  We pretty much spent the day there trying to trouble shoot.  The first nurse seemed to hit the sweet spot but could not get a blood return.  At this point Nurse Barb showed up.  She's one of our "peeps."  We decided to get an x-ray.  In and out of radiology Will, my husband and I went, holding onto Will the whole time.  The results?  Everything seemed normal.  With the port still accessed we tried again but no blood return.  In fact whenever someone tried pushing the saline through Will cried and said it hurt.  This started making him nervous.  We'd been at the hospital a few hours and we were all getting a little antsy and hungry.  The friendly charge nurse, who is now in my circle of hospital "peeps", thought maybe it needed a flush, so we tried flushing with a little TPA.  It hurt when anything went in so we could only hope it was enough.  In the back of my head I kept thinking port replacement surgery.  This is the last thing I wanted.  2 years ago Will was only 18months.  There wasn't a whole lot to explain then or any prior experience so for Will it was an easy in and out sort of thing.  I was a wreck but all was well.  Now the thought of surgery on my almost 4 year old seemed to make me panic.  My perfect little boy already had one scar, did we really have to contemplate another?  Could I really find it in my mom bag of strength to explain the procedure to him in a way that wasn't scary?  That he'd be going off to a strange looking room with strange doctors who would be responsible for my child's life?  I just wanted to get through lunch and back to trouble shooting so we could go home.

An hour later we were back up in the exam room with a plan.  The next step was a contrast dye test.  Was there a leak or a crack or had the port simple come apart?  Hopefully this would give us the answer.  All I could do was take a deep breath.  I wished out loud for Will's nurse practitioner to be back from vacation. She was my sanity.  My solid rock.  My voice of reason.  She would tell me when to breathe and when to freak out.  The air came out of my chest just as the door open.  It was her!  I looked around the room and all my medical peeps were here!  It felt like being in the safe hads of other moms and friends.  Others who all wanted the best for my little lovey.  We could brainstorm together to keep him safe.  Out loud someone mentioned port replacement.  It was now out in the universe and I had to accept this option.  Keep your friends close but your enemies closer. I had to stay one step ahead of hemophilia.  I had my peeps around me and Will was counting on all of us.  We headed back to radiology. This time with out my husband.  He had to get home in time for the school bus dropping off my other son.  Then he had to get all my and Will's stuff packed for a night's stay at Childrens'.  Radiology brought Will's nervousness back.  Pushing the contrast through hurt.  They could barely get any in but it was enough to see that nothing was getting into the tube.  It was just pooling around underneath.  What the hell was going on?  No one knew and the only real way to find out was surgery. Ugh!  I questioned whether the port could be fixed or if a new one could go in the same place.  No one knew.  I just couldn't bear the thought of another scar on my baby's perfect skin!  It is an irrational feeling but it is there.  As the day continued we sat in the exam room waiting for the prep cart to come for blood work.  The charge nurse and I looked at each other and sighed.  She could see the concern in my face.  I was sure of it.  She looked at Will.  He was being so brave.  Asking questions, being polite, going willingly and trusting all of it.  "Let's try one more time."  She said.  I could only nod as I gave Will a big squeeze.  No magic cream this time but we had to do it.  This was our last try.  Will laid back and I held his hand.  He patiently let the nurse prep the area.  The poke caused him to cry but as he did he asked, "did she get the sweet spot, mom?"  We all watched as the red snake flashed in the tube.  We did it!  It worked!  We got the sweet spot Will.  As my bleeder baby and I walked out of the hospital that day I held his hand tight.  He smiled and made a funny little wink at me.  Such a brave little guy.  He's the true sweet spot.  Inside and out.

Hemophilia Camp

I recently spent 3 days at Camp I-Vy.  We have been making this journey for the last four years.  Our first experience was when Will was six months old and had only been diagnosed 2 months prior.  Everything about hemophilia for us at the time was new, scary, unknown and unexpected.  The nurse told us about Camp I-Vy and it was the best thing we ever did!  We had been living in a dark place before camp thinking our son would be stuck in a bubble.  We were in fear of injuries and the thought of him ever playing sports seemed impossible.  Then came camp.  We saw kids of all ages running and jumping and playing.  A person off the street would have thought it was your regular everyday sort of summer camp.  No one was sad or quiet or still.  Everyone was smiling and laughing.  We felt awkward in our feelings of doom and gloom.  We looked around feeling out of place in this outdoor world of happiness.  Fast forward four years.  I have been the parent program counselor for the last 2 years.  Welcoming and calming new parents greeting and getting reacquainted with past families and spending 3 days in a supportive group environment.  The boys LOVE camp.  Jack has friends and loves the day hikes, arts and crafts, health hut and camp fire.  Will plays with other kiddos in the daycare enjoying art projects, nature projects, bubbles and movies.  We have fun and are relaxed and feel right at home at camp among other kids and parents who get what we go through.  I've spent quite a bit of time reflecting on camp this year.  I noticed how Jack was very into the hemophilia side of camp this year.  As a young sibling without hemophilia he has such compassion for his brother and the other little ones.  Very alert and protective.  At the same time I noticed some sympathetic injuries coming from him as well.  Any scrape or drop of blood meant a trip to the health hut for a band aid.  Even near the end of camp a mysterious hurt arm meant I was pulled out of a session to take him down to the health hut for ice.  He's an unaffected kid who is looking to fit in at hemophilia camp.  He's figured out how to do it!  Go to the health hut!  Now my most memorable event this year DID happen at the health hut and it was the opposite of our experience 2 years ago when Will got an award for courage.  In fact, I don't even want to remember THAT time.  No, this year the health hut left us with a sweet and magical memory for our family and one other.  Our good friends have a little boy a half year younger than William.  He recently got a port to deal with his inhibitor.  It's been a hard road and still continues to be difficult for this little boy.  At camp in the health hut he and Will took their shirts off together.  We pointed out how they both had a matching port!  He looked at Will's port and back at his own trying to let it sink in.  We all cheered as his mom accessed his port and he got infused hoping this too might ease his fears.  He sat on his dad's lap to watch Will do the same procedure.  At first he fussed maybe thinking it was for him, then he just sat quiet realizing his friend with the same port was having his mom access and infuse him too!  Done in a matter of minutes we all cheered and the boys swapped favorite band-aids.  We all hiked up to the top of camp together to let the boys play on the grass and nothing prepared us to see our little friend Nikos run over and give Will a loving hug.  A best port hemo buddies hug.  I can't think about this moment without crying.  If I had to tell someone why I love Camp I-Vy, this moment is the reason.  It just doesn't get any better.