Journal

Journal entry by Tracy Heiman

Dear family, friends and community,

Just a quick update from our adventures yesterday:
(All good news!😃 )

  • 6:00 AM wake up and put Emla cream on both arms
  • 6:30 AM head to Denver in HOV lane
  • 7:20 AM check in - pay deductible
  • 7:30 AM head to the pediatric infusion center to connect with our favorite pediatric nurses who still remember Klaus and easily insert his IV for contrast.  1 poke!  YES!  This time Klaus even watched and was SO relaxed about it.  The growth emotionally for Klaus year after year is really something to appreciate.  So proud of this guy!
  • 7:45 AM head to adult radiology and check in.  Fill out sheets and sheets of registration forms and work hard to remember "all previous surgeries and procedures".  Klaus helps to fill out the paperwork.  (Learning the ropes.)
  • 8:00 AM Klaus heads back on his own for a low dose lung CT
  • 8:30 AM Technician advises Klaus' braces will be a problem and will cause image issues.  Advised to postpone the test.  Removed his IV.  
  • 8:45 AM  Tracy calls our orthodontist in Boulder and they agree to remove his braces so we can get a good test result with his head/neck MRI.  Lets' get this done!
  • 9:00 AM Head back in the FAST lane to Boulder
  • 9:40 AM Orthodontist team removes his braces - at the same time - Tim arrives with our tube of Emla cream, tape and saran wrap to apply Emla on other arm for a 2nd IV if we can get the MRI rescheduled for same day. Tim also helps and puts gas in the car so we can zoom back to Denver
  • 10:00 AM Head back to Denver in the HOV lane again
  • 10:45 AM Make it to our oncologists office --- fill out sheets of paper work again! Klaus helps again.
  • 11:00 AM Meet with Dr. Clark for a physical and to look for lumps, bumps and annual check u[. She shares the initial lung CT looks good but wants to check the images out herself and will call back.
  •  12:00 PM They are able to re-book the MRI.  We rush back to the adult side of the hospital -- no - wrong advise - head back to the kids side for the MRI.
  • 12:30 PM - check in for MRI at kids side of the hospital - need to get the  IV done again---choice for Klaus, go back to the infusion center or give the folks in MRI a chance at a good poke?  Best part  - is that the Pediatric MRI team has been part of Klaus' imaging team for YEARS and they all really love him.  So they can do the IV if he trusts them?  And showing his maturity again - Klaus agrees - goes back alone, gets the IV inserted, no issues and then has the MRI all by himself. 
  • Klaus comes out at 2:00 pm.  Rested, relaxed and DONE FOR THE DAY!
  • 3:00 PM head back to Boulder and eat out for lunch to celebrate at Panda Express!  
  • Our day is done!  WHEW!  

Today Dr. Clark called and shared test results:

LUNGS METS:  STABLE OR REDUCED - LOOKS LIKE A FEW OF THE LARGER LUNG METS MAY HAVE REDUCED IN SIZE!  WOW!!!

HEAD/NECK/THYROID:  NO NEW DISEASE!

Next appointment will be in a year unless any problems come up earlier!  SO SO SO GRATEFUL!

Updates:

2019 BHS St. Baldricks:

As you all know the St. Baldrick's Foundation is near and dear to our hearts - this year Boulder High School raised a total of $47,000 for research. WOW.  Check out the pic's of Klaus and his buddies shaving along side him.

Thian, Nik, Seb, Spencer. THANK YOU! These friends have been shaving and supporting Klaus for years during his cancer journey --we are so grateful for his amazing friends who support Klaus during the ups and downs of cancer - just being supportive friends who just "get it, and get Klaus".

BHS MTB Team:
The BHS MTB team together raised over $16,000 in honor of Klaus and his team mate Martha!  Pretty amazing right? 

I am also sharing with you the cb site of MTB teammate Martha.  She spoke and shared an inspiring message at our event- sharing the importance of the event, the benefits of research and explaining a bit of the life of a teen dealing with cancer and it's impact over the years.  Please send Martha and her family strength, love, prayers, and any support you can offer - it's just NOT okay that this soon to be senior in high school is now dealing with her 3rd relapse of Ewings Sarcoma.  https://www.caringbridge.org/visit/teammartha13

We honestly cannot thank you enough for your continued support of our fundraising efforts year after year...... more treatment options will become a reality....

Martha is one of the many reasons WHY we are SO grateful for the continued support.  For Klaus and all our friends and angels in the childhood cancer community.  So many children and their families appreciate your help. THANK YOU.

Remembering Jules and TEAM JULES:
Another very special team at the Boulder High Event was Team Jules.  Just over 16 weeks ago - dear Jules - sadly died from her disease. It's just not okay.  At the BHS event - members of her community gathered to share a sincere message of Jules journey, her struggles, her hopes, her aspirations, the complications and the impact her disease took on her body and mind.  3 compassionate team members chose to honor Jules and shave their head in her honor and memory. Together team Jules raised over $8,000.  https://www.caringbridge.org/visit/juleslaurita

How amazing are these kids with such incredible hearts? You will always in our hearts precious Jules and family - words just cannot properly express our sadness with your passing....


How strange to transition to this?
NEW PROSTHETIC TEETH:
Attached is a picture of Klaus and his 5th set of teeth?  I think that's right 5th set?  Looking good right?  These should last him a while.  Of course, we were very excited to have pre- authorization and confirmation insurance would cover the expenses. (these teeth cost more than our used cars! and took over 6 months of fittings and calibration)  But unfortunately, we have some kind of hangup and are going through insurance dispute proceedings... UGG... 

Not fun, but GRATEFUL his new teeth fit, look, work so much better than his older teeth.  We'll figure it out as we always do - but again this sheds light on so many other families with MULTIPLE insurance issues they are having challenges with... I feel for all these families...Thank you Dr. Gordon Gates for your work.

Whats on the net?  PFHT: 
Just yesterday as I was sitting and waiting during Klaus' tests- I googled "Plexiform Fibrohistiocyctic Tumors" and I was VERY happy to see a few more updated websites, research papers and clear information on this disease.  Grateful the sarcoma medical community has responded to the lack of information shared and has stepped up to be more collaborative with their information.  

Some of the new information found shares simple and clear advise on treatment options.

Imagine when we started this intensive journey back in 2009 - clear information WAS NOT available.  There was no mention of it being a sarcoma (cancer of the connective tissues). 
 
Yes, each case is a one of a kind, but in general - complete surgical removal with wide margins should do the trick and then diligent follow up is needed to track and respond to any spread as occured in Klaus' case. Klaus and his experience can help guide others so they can make better choices to prevent disease progress.  

I hope by telling Klaus' story - we can share some relief that even if disease progresses like Klaus' case - there is a positive light at the end of the tunnel.  We've had a LOT of worry  (the worst of worries) over the years and that never goes away. But it's the constant reality of the gift Klaus and our family has to celebrate.  We are gratefully invited to move forward. But why do others not have the same gift?  Why do they suffer, why are they lost?  It's just not okay.

We will always be members of childhood cancer community..and one day we look forward to the choice that further tests and monitoring will not be needed.   Klaus too will ring the symbolic bell in the waiting room that "treatment is over" and we are symbolically moving on from cancer. 

But for now and always, we will do our best to continue to support our friends and loved one in the trenches, our friends still fighting for their lives.  Saying prayers and always remembering our angels friends above,,,,

We are grateful,,,    

With Love, Klaus Dragon Heiman, Tracy, Timothy and Calvin

Remember - no news is good news.... xoxooxoxo
Patients and caregivers love hearing from you; add a comment to show your support.
Show your love and support for Klaus Dragon.
Make a donation to CaringBridge to keep Klaus Dragon’s site up and running.

Journal entry by Tracy Heiman

It's been a year since our last update:

Monday, June 18th, 2018 - Klaus did it again - his lung mets continue to be stable!  There is nothing to be found in his head or neck.
 
As we traditionally share - there was a lot of hugs shared at the oncology office today.  We are SO grateful.
 
Klaus is now 6" 1" tall! 150 lbs, 15 years old and going into 10th grade next year!  He's getting to the end of his growth spurt and therefore the highest concern for growth of the lung mets.

Last year was a big leap of faith - moving out to yearly reviews consider the mets in his lungs.  Both our oncologist Dr. Clark and our Naturopathic doctor - Dr. Rao - are working to slowly cut back on his use of supplements.  He's down to 5 supplements now and it would be great to see if we could reduce the list even more without doing any harm to his strong immune system.  

Next appointment will be in one year unless some lumps or bumps show up unexpectedly.  

We are working on making him a new prosthetic dental bridge with a team here in Boulder since he cracked it a bit ago.

Below is a picture taken at the hospital today.   A non-profit called "BITE ME CANCER" shared a care bag with some gifts specific for teenagers. it was a very nice surprise. 

Last week Klaus was at Camp Wapiyapi and was a "JC" Junior Consular in training and tomorrow he heads off to Camp Courage.  Both are camps in Colorado for kids and their siblings dealing with childhood cancer.  We have been so grateful for the support of these amazing communities of volunteers and families who just get it.  At these camps our kiddo's are so grateful to have their own community of others who really understand their journey.  Each year Klaus gets farther away from his beginnings - the brighter the light he shares with others for hope during their darkness.

Other special news:
Big brother Calvin graduated from Boulder High School this year and will be attending Columbia University in the fall.  Studying Biochemistry.  At this time he is thinking of a premed track. In order to attend Columbia he's needed to apply for many scholarships in order to make the financial responsibilities possible.  He's been working so hard on all his applications.  One of the scholarships he applied to was the North Western Mutual Siblings of Childhood Cancer Scholarship.  It made us all so proud when they provided him with a 2 year scholarship!  We are so grateful for the generosity of this special community to help him along and support his dreams.  As Calvin has filled out all his school and scholarship applications - I've had the opportunity to read his words, and get a deeper understanding of how this experience as a sibling has impacted him so profoundly.   He has taken the darkness and molded those experiences into something that motivates and inspires himself and others.  This year he also organized at Boulder High School the 1st Annual St. Baldrick's Head Shaving Event.  In less then 6 weeks - he motivated his close friends and over 100 kids to participate, volunteer and shave their heads for awareness.  Together this community raised over $45,000 for childhood cancer research.  Imagine what each of these kiddo's will do in the future for the cause of their beliefs?  

We could not be more proud or grateful for both Klaus and Calvin and how they use this experience in a positive way for others.  Each time I hear our news, I feel grateful.   But at the same time the darkness is present too.  With a heavy heart, today as Klaus and I were walking back to the office from his CT and MRI - in front of us was a police escort walking a man down the hallway with a tiny blue gingham coffin in his arms.  I can't but imagine the hardship others are feeling the same time we are feeling our joy and relief.  That is why we will never drift away from this community - it is always part of our lives - the good and the dark.  There is always a way we can contribute to make a difference for others,   our chosen path is helping others and helping to inspire funding for research and cures.  

THANK YOU ALL for all the support over the years for our family and also all the donations for all the walks, climbs, head shavings we have participated in.  Together we will continue to make a difference.

With a grateful hearts,
 
xoox Tracy, Timothy, Calvin and of course - Klaus Dragon Heiman
 
 
  •  

Journal entry by Tracy Heiman

On Friday, June 23rd - Klaus did it again - his lung mets continue to be stable!  There is nothing to be found in his head or neck.

This is AMAZING NEWS!  Dr. Clark and I just hugged in relief.   

Klaus is now 5'11 1/2" tall! 141 lbs, 14 years old!   

He has been going through full on puberty and growing leaps and bounds. When hormones hit - it was a very big concern that the mets would grow too. 

Since day one his case was in a class by itself and with his lung mets stable AGAIN - he proves this again.  Special case, special considerations, special and unique decisions.  No growth!!!  What causes them to be stable?  Our supplemental therapies with our Naturopathic doctor?   We will never know….

So together Dr. Clark and I agreed we will skip the 6 month scans and check up - spreading out the next check in one year from now. Taking a big leap of faith!

WOW,,it's so uncomfortable waiting a full year to insure those buggers have not grown…but our instincts tell us this is the right choice.  Pending what we learn a year from now - we may decide to be done with follow up's after review.  The thought that as Klaus' growth slows down - the risk of growth potentially diminishes.    Wow, wow, wow……. weird, but a wonderful wow. We are grateful and thankful….

We want to keep Klaus out of harms way and consider the unneeded exposure to radiation from the low dose lung CT.

We will see Dr. Clark in one year unless we need to check in on any issues.  WOW… what a gift.  

Thank you, thank you, thank you…. updates on fundraising:
St. Baldrick's Update:
This year The Dragon Warriors raised a total of $13,811 for childhood cancer research specifically for the Robert J. Arceci Innovation Award!  THANK YOU! Amazing???!!  Thank you each and every donor and participant!  (Dr. Clark trained under Dr. Arceci - when I shared with her the amount raised- she was just speechless and had tears in her eyes--he was a doctor like no other and made an impact for so many.) Thank you….  

Alex's Lemonade Stand - Denver Lemon Climb - Thank you to my family and dear friend Paula for joining our team at the Denver inaugural event  - we all climbed 43 floor of stairs (to represent the # of children diagnosed daily) raised $860 for kids cancer research, Super Sibs programs and provides assistance for 2nd opinions.  Thank you each and every donor and participant. 

Klaus was 4th male and 7th overall finisher! *The lungs mets obviously do not slow him down!!!


So with that - we are signing off, living life, and will only post if there is some news to share. 
Warmest hugs to each and everyone of you for sharing the love and support to Klaus and our family over the years….our community means the world to us.  

xoox Tracy, Timothy, Calvin and of course - Klaus Dragon Heiman


P.s. Side note:  We are grateful the ACA is still the law of the land (as of today - Trumpcare is delayed to a vote with the Senate until after the July 4th holiday because they do not have enough votes to pass it. )

Please share our story of how we were denied care before the ACA. If you read back in our blog to the beginning--I wrote pages and pages, and pages of our insurance denials and shared the distress these denials caused our family.  We almost lost everything- I had to quit my job so I could fight the insurance companies full time and also take care of our sick son.  It was HORRIBLE.  We are fortunate our community supported us to fight and turned things around. We are back on our feet. Since the ACA - Klaus has received all the care he has needed. It has been the best years of our sons care. Knowing he had a right to obtain the type of care he needed. He would not be denied care.  We are sick with the thought that our country will turn their backs on citizens who need the help the most.  The sick, the vulnerable. The ACA is not perfect--that is SO TRUE, but we need improvement's to the ACA--not a repeal for 23 million Americans. If you want to ask me to share more of our perspective in the importance of health care - and how to support changes to save American's $'s so they can afford even getting insurance, afford their deductibles, afford the medical bills,  afford prescriptions, find resources to support their needs…I would be happy to share what we've learned….our door is always open--use our story,, share from our experience…. let's improve it,,,not take it away from millions.  That is just SO wrong. Citizen's in the greatest country in the world deserve more.  


 

Journal entry by Tracy Heiman

Hi family and friends,

Last time we posted was about a year ago.  No news is ALWAYS good news!

Last year Klaus had the lump/biopsy scare with the fabulous BENIGN results and it was St. Baldrick's time.

We are thankful there is not much to report so therefore no posts.

Klaus still lives with his multiple bi-lateral lung mets so we just continue with his MRI's, CT's and x-rays to keep an eye on the buggers. Working with his oncologist and naturopath to mix up and keep his immune system strong.  His last check up was at the end of 2016 and all continued to be STABLE! There are still minor challenges with his implants and the tissue growth but never to the point of needing surgical resection as previously.  (which is great!)

At the end of March - we are heading out east to check out some colleges (yes colleges!) for big brother Calvin.  Calvin is now a junior and Klaus is in 8th grade.  While we are in NYC - we are stopping off to see the folks at MSKCC for 2 days. Pediatric Oncology/Sarcoma Specialist, Head/Neck Oncology, Dental Oncology and Head/Neck Reconstruction.   Two of the doctors are part of original team.  Two are new members in the departments who helped make the magic happen for Klaus.  

Klaus has grown so much recently and it's amazing to see how he's "grown" into this big old jaw made out of his fibula. And amazing those lung buggers have NOT grown.  When he was little - he had the cutest/crooked smile  - but now Klaus looks even more amazing as he's grown into it all.  We just want to check in with MSKCC while we are there so they can learn from Klaus but to also see if there are any other considerations we should ponder regarding the metal in his body and what they would recommend long term for dental progress.  Also - keeping him current with any relevant treatments if/when/what --hoping they are never needed!  

As you know - every year at this time we go all out to support the St. Baldrick's Foundation and create the Dragon Warriors!

This year we have 10 shaves on our team and we are up to $6,243.00!  Would you consider making a small donation again this year? Klaus, Tim and my sister Laura are all shaving this year (Laura is turning the big 50 and wanted to make her year special so she choose to honor Klaus and the kids!)   Did you know since we started this journey - for St. Baldricks alone - we have raised almost $50,000 as a community for research!?  THANK YOU! Tim was the first to shave 11 years ago…and so many friends have joined us through out all those years. THANK YOU! Amazing!

There are so many children and adults to honor--honestly just too many. So with that - each of these souls is our inspiration.   I'm sure each and everyone of you have someone beyond Klaus you honor - who was impacted by cancer?  Our family will always continue to be the voice to support funding and research - we just can't walk away - this is always part of our lives and we choose to do our best to change it for others and for the future.  Thank you for choosing to be part of it with us.

Today I would like to share a special remembrance to honor my cousin James.  Just last week he went to the hospital and learned he had lung cancer.  They then sent him home to Hospice. Today we learned the shocking news he passed away today. Just like that? As my cousin shared "Yes it's sad, you never know what's in store for us and how much time we have." I remember all us growing up in Northern Michigan on the farm and just being kids.  Summer time fun.. I'm still speechless for my immediate family and the loss of James.  In our Boulder kids community we lost a sweet young soul - Zadia.  Just this fall everyone was rejoicing because a new treatment turned her ovarian cancer off - looked to be cancer free.  Then a few weeks ago it came back with vengeance and took her life a few days ago.  Too young, too soon.  

We need to continue to care and do our parts' to change this…and that's where St. Baldrick's shares inspiration with us. Funding = research = cures.

This year - we would like to donate all our team funds to the Robert J. Arceci Innovation Award.  A pioneer in childhood cancer research and a compassionate oncologist who made a big impact in our lives.  If you click on the Dragon Warrior Link - you can read more in our comments section about Dr. Arceci and how he help our family and so many….he was sadly killed in a hit and run accident.

Dragon Warriors Team Page (and to learn more about Dr. Arceci):
https://www.stbaldricks.org/teams/mypage/111308/2017

Klaus' personal Page:

My sister Laura Rizzo's personal Page - (her company matches $ for $!! So consider placing your donations with her!)

We are always so grateful for the positive outcome Klaus continues to shine with.  He still lives his rare sarcoma called Plexiform Fibrohistiocyctic Tumors. We raise awareness and funding for if the tides change, and a new intervention is needed - a new treatment could make a difference for him and so many kids just like him.  Thank you for giving us continued hope.  Life is precious, life is good, community fills the soul.  

Thank you so kindly for all you do.  

Warmly,
Tracy, Tim, Calvin and Klaus Heiman

Journal entry by Tracy Heiman


Great news!

If you have not already heard the relieving news - Klaus biopsy's were benign!  It took 5 days to hear the news but we were so relieved.

Klaus ended up having 3 core needle biopsy's in the area behind his ear on the same side of his previous sarcoma.  This brave boy choose to have the procedure done awake instead of going under--amazing! Needles, numbing, 3 core biopsy's and then stitches to close it up.  He is amazing!  We are so thankful and grateful for the news--we know so many are not as fortunate as we are.  Before the procedure, many nights Calvin would sleep with Klaus in efforts to support and comfort his brother who like us all- was really nervous and at times cried.  This stuff just really stinks.. but our boys continue to amaze us with their strength.  

Sorry it took me so long to post - but I have been away for work in Asia and just now returned and was able to share the posting. It was SO hard being away during the testing, St. Baldrick's and then waiting for the news….But my amazing boys and husband got the job done.. they are solid and I know "they've got this".  

Thank you all for your kind words as we planned, executed and waited for results… it was not easy but we are thankful and each and every word of encouragement helped share some love and light to us.  

Also - Thank you ALL for your generous donations to our Team Dragon Warriors!  Together we raised just under $6,000.00 for research!  Check out the link for St. Baldrick's below - we maybe funding a summer St. Baldrick's Research Fellow this summer because of your generosity!  This money is seriously changing what is possible.  When Klaus first started his journey - I remember treatments which were thought of as "dreams" now these options have been through clinical trials and they are mainstream practice.  Imagine what can come in 2, 3, 6, 8, more years?!  Thank you for being part of the change we want to see in the world!

http://www.stbaldricks.org/blog

Below was the message we shared with members of our team--see the picture above!  
Nik, Klaus, Thian, Tim and Liam!   What awesome kiddo's!  Thank you also to Coleman, Luke, and 2 young girls (friends with Luke) (not in the picture)

Klaus is healing, stitches are falling out and we just keep moving on---no news is good news..  

With Love and Gratitude,
Tracy, Timothy, Klaus and Calvin Heiman

 
Dear members of Team Dragon Warriors,

We wanted to thank you ALL for your bravery to go bald and be brave in honor of Klaus and all those impacted by childhood cancer.

We learn just last Friday that Klaus' biopsy taken on the Tuesday before our event was benign--what a tremendous relief! Our family had the opportunity to speak at a St. Baldrick's event in Boulder and we shared a bit of his story and the pending biopsy.  At the event we met a 12 year sarcoma survivor and he shared some wise and kind advise to Klaus "to hang in there" - he too has had many lumps and bump biopsy's over the years--and to not worry too much.  His story definitely gave Klaus and our family some peace as we waited 5 days for the results.  I was across the world and when I heard the news--I had tears in my eyes.  So many more children are not so lucky and they hear devastating news all the time.

For the above reasons and from the inspiration of Klaus and kids  just like him all around the world-  together we have opportunity to change the future for those who walk behind Klaus. And we can be proud because your efforts will support valuable research that is needed.

Raising awareness with bald heads, raising funds for research, and then being part of cures. That's our Team Dragon Warriors!

Did you know it just takes $5,000 to fund a new St. Baldrick's Research Fellow at one of the fine research institutions in the USA? Our team raised just under $6,000.00!   Amazing--we are SO thankful and inspired by your outreach and willingness to support St. Baldrick's.

Thank you, Thank you, Thank you from the bottom of our hearts.  You are all our hero's!  Be proud each and every day of your contributions.

With love,
Klaus, Calvin, Tracy and Timothy Heiman


Journal entry by Tracy Heiman

Hi Everyone!

It's been a while since our last post because we are just moving on with life…no news is good news!

This week Klaus had his 6 month check up where he had an lung x- ray and a check in with his oncologist.

At 9 pm before his appt. I asked Klaus to do a lump check.  It's been a while.
So to a surprise to Tim and I, Klaus shares he has to lumps behind his left ear - same side as all his reconstruction.

uggg..Mom never likes surprises…

So off to Dr. Clark we go the next day.

Mouth inflammation under his prosthetic:
Lumpy in his mouth is still there,, not worse,, not better,, just there…so that's good.

Chest X-ray
Goods news- the check x-ray is clear - the lung buggers do not show up so that means the lung mets continue to be small enough to not show up on an x-ray. Yeah!

Lumps behind left ear:
But--she too is concerned about the 2 lumps--advising us to see the ENT.

Today Klaus and Tim got into the ENT and thinks it's best to get a biopsy ASAP.

Mom, Dad and Oncologist were thinking it could be sebaceous cysts like Calvin had years ago?  But the ENT thinks it's NOT a lymph node and that's it's not a typical location for such a cyst.

Klaus right now has raging teen hormones so pimples and flare ups are common---BUT,, again the ENT did not know and thinks it best to check it out.  Did I tell ya he's 5'8" now and weights 125lbs?  Crazy ehh? Lets' all just hope it's just nothing!

Klaus now has to decide if he want the procedure done in office or under general.  

Mom prefers general to insure they get a good sample if it IS his sarcoma again vs getting a poor sample.

UGG..

Jaw panoramic at dentist
At his last dentist appt a "lesion" on his jaw panoramic was noted -a bit concerning--but Dr. Clark and the team just researched back on his MRI's and it's been seen since 2013.  So they will just monitor it when we do his normal MRI's and now get yearly panoramic to insure it stays stable.    Whew,,,,

Soooooo,,,, It's just another day in the life of living with PFHT,,,, could be nothing,,, or could be something… considering his history and the potential for a sleeper with this sarcoma---it's appropriate to check it out properly and insure this is not leftovers from years ago slowly growing..  Let us just be normal growing up kids hormones and swear filled glands stuff….

The next step is Klaus' decision--he's old enough to understand and make the choices.

Thanks for giving Klaus some loving…. 

St. Baldrick's
Tomorrow our family will share Klaus' story at the local St. Baldrick's event at Celestial Seasonings….bummer to be sharing some uncertainty.. but it's good to share why we so believe in awareness = funding = research = cures

Klaus and Tim will be shaving their heads at Centennial Middle School on March 16th.  Won't you please take a moment to support them?  So many kids are going to the limits with their cancer...

Tim's page -- 8 years shaving!
https://www.stbaldricks.org/participants/mypage/824336/2016

Klaus' page - 4 years shaving  ---first lump discovered when he was 3 1/2 years old---going on 13 years next month
https://www.stbaldricks.org/participants/Klausdragon

Thank you for all the support!
Let's put it out there for Klaus!  The orginal Dragon Warrior!

xoxo

Journal entry by Tracy Heiman

Yesterday was the CureSearch Walk in Denver and with the generous donations our community donated - we raised $625.00 for research and support!

Thank you!  So far the entire event has raised almost $55,000!  Amazing!  Thank you!

Please see this link for more information from CureSearch and the research it's funding, support for kids families in our communities dealing with cancer and information on how to get involved. When looking for answers for Klaus in the beginning - CureSearch was one of the first reliable points of reference I found on line to help with our questions.  Later I learned of their research.  Because this is a national foundation--they help ALL the children's hospital's around the country.  Providing support in the communities.  That's one of the many reasons' I'm a big supporter--their out reach into communities impacted by kids cancers.
http://curesearch.org

Below is our team link in case you missed it earlier:
Klaus is lucky,,,,  our entire family is blessed and forever grateful.   Thanks for all you do! 
http://www.curesearchwalk.org/rockymountain/cullen_klausunitedforcures 

Big shout out to Kaia Fitness of Boulder and Lafayette, CO. for hosting a Sweat and Brew gathering in honor of CureSearch.  This sold out/work out event raised over $250.00 and shared new awareness in a community which may have never been touched by Childhood Cancer.  THANK YOU Angela Patterson and the entire crew for coming out and making a difference.

I hope you do not hear from us for some time,,, we just keep up the hope to keep the good times rolling with Klaus… 
Thankful, grateful, inspired…..

With Love,
The Heiman Family 




Comments Hide comments

Journal entry by Tracy Heiman

Dear family and friends,

It's been a big year for our family and a while since we've posted.  We moved too!

Let's start off with the good news - in August - Klaus did it again--his lung mets did not grow! He rocked the blood work, IV, MRI and low dose lung CT.  Stable disease!

We (his medical staff and our entire family) are just continually amazed and thankful.  We are shocked that he is now 5'9" tall!!!  And those mets keep stable as they've been for 5 plus years.  We continue to rotate the supplements he's on with his naturopathic doctor - in guidance with his oncologist Dr. Clark- keeping his immune system good and strong.  

Did you know September is Childhood Cancer Awareness Month and GOLD and the Gold Ribbon are it's symbols?  Can you help us spread the word?

Just yesterday we visited his very kind and gentle prosthedontist in Boulder to screw off his bridge and see how the tissue is looking underneath.  Klaus was concerned a part of his teeth chipped off the other day but thankfully,, it was just a large chuck of plaque that had built up under his bridge.  Plus, there continues to be chronic inflammation and bubbly tissue growing up and around the implants.  It's great to take the teeth off for steam cleaning and seeing how the tissue's reacting--insuring there is no signs of infections.  We all decided it's been worse before so just keep an eye on it.  We also picked up some new fancy dental tools to help support keeping it as clean as possible. Same old story we've shared many times before… it's ALL good!  

How long do we keep doing all these tests? Will we cause more harm with radiation???? I always ask the same question: at this time, because of the unknown nature of his sarcoma - with so many spots situated in his lungs - continued monitoring is the smartest bet to keep ahead if/when/never his disease decides to grow again.  His CT is calibrated for his weight to keep the radiation dose as low as possible which really help.  

In June we sold our home of 13 years with the goal to down size and get caught up financially from life/cancer and prepare for college for the boys.
After a few months of couch surfing  - we finally moved in 2 days before school started!   We moved down into town to a tiny townhouse--best part is being 500 giant steps from my brother Gary and Cindy's house!  There's nothing like family and having them close by.   We started the process to prepare to sell in November and we are just now unpacking our boxes.  Give us a few more weeks and we will be all settled in.  It's been kinda crazy---not all of this has been easy--but anything is easier than dealing with cancer!

Our new address is: 
1050 Poplar Avenue
Boulder, CO. 80304
303-415-9895 H
303-960-7322 Tracy's cell
303-710-5253 Tim's cell 

Because of the "crazies" in our lives,, I have not had the chance to do much in way of organizing for our Annual CureSearch Walk in Denver.  This year the 2 mile walk is on Sunday, October 11th at City Park in Denver!  Our buddy Cullen and his family will again partner with us to raise $ for research and awareness of our kids cancer community.  

Please consider Walking with our team, Walking "virtual" in support of our team, or kindly make a donation on behalf of Cullen and Klaus, angels and all the children dealing with cancer.   We were touched just last week learning that a family on Calvin's X country team learned their daughter has a type of sarcoma.  We will rally and support this family just as so many gave us a foundation so we did not crumble.  

We will forever pay it forward.  It makes me so sad when I learn of more cases impacting so many young lives.  Just today a sweet little 26 month old was lost to leukemia in our community….just like that- she's gone.  We have to do more,, we can help others, we can help these sweet souls and help prevent more cases from happening.  

Klaus is lucky,,,,  our entire family is blessed and forever grateful.   Thanks for all you do!
http://www.curesearchwalk.org/rockymountain/cullen_klausunitedforcures

This post is Klaus approved!   xoxo

 

Journal entry by Tracy Heiman


https://www.stbaldricks.org/participants/calvinh 

https://www.stbaldricks.org/participants/klausdragon 

Today Calvin, Klaus and Tim will once again shave their heads to raise funding for kids cancer research.  7 years for Tim and Calvin, 4 years for Klaus.

Today is the 5 year anniversary of learning the shocking news that Klaus' sarcoma had moved to his lungs. We were devastated….

Spread like tiny popcorn kernels  in his lungs.  But we are thankful because with a few miracles from above and maybe some eastern medicine--Klaus sarcoma has been STABLE.

Last week Klaus saw his oncologist and again we felt SO relieved.  No changes to his medicines, and no changes to his lung mets.  THANKFUL!  Klaus is growing like a weed but the METS are NOT.

Thank you for all the support and donations over the years to research for kids cancers. A new drug for Neuroblastoma was just approved - one of only three kids specific drugs in the last 20 years--and St.Baldrick's funding was part of that research..We need more.. so we do more…only 3 drugs is unacceptable.

We'd like all this done for Klaus.  And to say we never need to test/scan him again--that he's in remission--but that's just not the story with his kind of sarcoma.

So we take it all in--STABLE and share our thanks,,, live life…. and continue to raise awareness,, supporting our angel families, supporting kids now and kids later who need research, adults and other families members, and maybe one day finding a cure…..

Thanks for any simple donation you can make to this amazing foundation. See the links above.

We will shave  at Centennial Middle School today at 5;00pm .  Join us if you can--you'll be inspired!  Kids, firefighters, police officers, parents, CHIP the CU Mascot--over $23,000 raised so far!  THANK YOU--OUR COMMUNITY IS INCREDIBLE.  We are inspired and feel so supported.  THANK YOU all!

www.stbaldricks.org


Journal entry by Tracy Heiman

https://www.stbaldricks.org/participants/calvinh

https://www.stbaldricks.org/participants/klausdragon

Hi Family and Friends,

It's been a while since our last post but that just means life is rolling on by and we are always very thankful for this.

What's new in medical news?  Klaus just recently had his fancy prosthetic teeth removed for 5 days so our new local prosthedontist could whip up some larger and improved teeth for him. His adult teeth are growing larger and taller, so the fake were removed and a new set built up taller with improved alignment so he does suffer jaw issues.   It's great we can now get such wonderful care right here in Boulder.  Still having issues with Mr. Lumpy and tissue growth underneath the teeth--just glad it's not infected. Klaus think's it's pretty nifty that his teeth are screwed on with real gold screws.  The doctor updated the screws this time too so Klaus added another trinket to his home dental collection: gold screws, 4 sets of injected molds of his mouth as it's grown, and three different sets of prosthetic teeth.  

It's great having new teeth but at the same time, it kinda stunk for Klaus because he felt embarrassed to be without his teeth at school.  Without the teeth his facial features are different, it's harder to chew, and you really noticed a different in his articulation.  Being a regular 12 year old boy who just wants to be "normal" like every other pre-teen is where it's at.  He does not like to stand out in a crowd, he'd rather blend in…without teeth, he just shy's in the back of the classroom. Kinda like being exposed.  Can't blame the guy for feeling that way at this age....all's can do is love this little guy let him know how much he rocks.    

Just this week we got the call that's always in the back of our mind,,,next appointment and x-rays.  I'm feeling those lung mets are all stable because Klaus is just doing great from what we can see from the outside….But I tell ya,,, it would be great if one day this ride was over...

I updated the photo to show our picture from last year--our St. Baldrick's event.  Would you please consider joining us again on Tuesday, March 17th at Centennial Middle School?  We need some new heads to shine with Tim, Calvin, Klaus and all their friends.  Firefighters, Police officers, Chip the CU Mascot will be joining in our community event to show support!  Please considering joining us or if not, can you make a small donation on behalf of Klaus, Calvin and all those impacted by childhood cancer? This special event now in it's 6th year at Centennial is pretty inspiring--these kids and community are pretty amazing. If you'd like to volunteer at the event in any way, please let me know too because I'm sure we could use your help!  If you'd like to post some posters of our event at your work or church or Starbucks--let me know, we can make sure to deliver!

Just a while ago I was fortunate to walk by our printer and found this below short story written by big brother Calvin….it really moved me.   We will never lose our voice to advocate for childhood cancer awarenss.  Thank you for all the love and support over the years.

The Chances of contracting some form of cancer are 50…..

The chances of contracting some form of cancer are 50% for men and 33% for women over a lifetime. Yet it almost seems like my family doesn't even care about the science or statistics, this is our story. My brother Klaus was diagnosed with a very rare sarcoma at age 3 and that started our journey in a sense. It has been a long road full of tears,laughter and depression. We were and still are a wrecking ball of a family, with us demolishing everything both good and bad, whether it is medical boundaries to what is expected of a typical family. We don’t really follow the rules of society to say the least. Through it all I always had this sense of abnormality. I mean when you travel to all these different places and are stressing out of your mind 24/7, finding that sense of normality is your last thought. Over time though, it crept up on me and made me motivated to find normality in some way, whatever normal was.

 This Christmas we traveled to Arizona where 9 of my dad’s 11 siblings live. It always is this exchange of ideas and information whether it is from the photography guru Pat, or the outdoor fitness fanatic Johnny, there is always a story to hear and a memory to be made. One moment that stands out the most is this “gnarly” mountain bike ride we went on with Johnny. My dad and brother have caught on recently to the whole downhill mountain bike fad and they are totally adrenaline junkies by this point. (I just have to point out that even though mountain biking is not my thing or even close to it, I managed to hit only one cactus, quite an accomplishment by my standards.) Afterwards, we embarked on another interesting ride through the desert to dinner, our favorite Mexican restaurant by my dad’sold home. Heiman car rides are unlike anything you have ever experienced-there is this mix of playful banter and gossip without being snobby or rude. That car ride changed my view and the trajectory of the entire family; my aunt Paige had contracted cancer. This was immediately a moment of shock among all of us because our uncle Dan had gotten cancer about a year ago and it was a sense ofde-ja-vu and the start of a whole new journey, one we all knew too well.

 That night, after an evening of sadness yet food induced comas, I was laying in bed running in my head over and over the events of the day. During that half shocked half asleep state that I found myself in, I realized something. That sense of normality I had been searching for, for the past 11 years is something I would never truly find. Normality figured out, isn’t something that is a tangible or something physical. Normal is different for everyone and our normal was being not normal. Almost like a weight being lifted off your shoulders I realized what I had been searching for since forever was right there in front of me, our normal. Our normal was going to be informing others and helping other families that deal with the same problems-volunteering for foundations that gave so much to us and giving back to those who helped, and living the most hectic not normal life I could imagine. But hey, that was fine by me because that is my normal and I found comfort in that. That sense of, this is who I am, whether I like it or not, I cant change it. This is normal.

 p.s.. Tim found a job just last week!  Unemployed for 8 months…very thankful!



Klaus Dragon’s Story

Site created on March 8, 2009

Plexiform Fibrohistiocytic Tumors (PFHT) Metastic: A very rare soft tissue sarcoma of intermediate grade malignancy-under 175 cases are on record since 1988, less than 4% becoming aggressively metastic-moving to regional lymph nodes and pulmonary system.Sarcoma is a cancer of the connective tissue--including muscle, bone, fat, nerve, cartilage, blood vessel and deep skin tissue.  This specific disease is considered an "orphan cancer" because very little is know about it, and how best to treat it besides surgical treatments. Many times, orphan sarcoma's such as PFHT are misdiagnosed. 



Our story began in January 2007 when we found a pea size lump in Klaus' mouth-now he lives with multiple bi-lateral lung mets. We live life, hope and pray for a cure.
   Klaus' metastatic sarcoma was misdiagnosed for a very long time before proper surgical treatment was taken. A confusing aspect of this rare sarcoma is the fact that in pathology, there is an overlap of PFHT (malignant) with Cellular Neurothekeoma (benign). This key point was an area, which caused our original medical team to make safe calls instead of hard calls, which are needed in sarcoma management.
  As parents, we did not know that PFHT was considered a sarcoma until August 2008. We did not know the #1 goal for treatment & cure for rare sarcoma's such as PFHT is to obtain clear and wide surgical margins in the 1st surgery. If upon review of the surgical pathology-clear margins are not obtained-you MUST go back and obtain clear margins.  Klaus unfortunately did not have clear margins on surgeries #1 and #2 with our original medical team.  
    The location of the first disease was challenging to surgically treat, but we as parents, were never informed of PFHT being a sarcoma. We never knew there could be two choices in his care: 1) be aggressive & obtain clear margin, or 2) watch & wait.  The only medical advise shared with us was "not to worry-watch & wait-this is not something to be concerned with-the disease was encapsulated".  In retrospect, we know this type of sarcoma management is incorrect in regards to the diagnosis of PFHT--even with the confusion of the benign Cellular Neurothekeoma.  We want other families to learn from our journey and make informed choices to keep this disease from spreading as it has in our son.
  Because of the opportunities of the Internet, we have connected with 3 families around the globe with children diagnosed with PFHT. All 3 medical teams knew enough about this sarcoma to go back after the original surgery & re-excise & obtain clear/wide margins.  Klaus' original team unfortunately did not have this expertise or knowledge.
  During our 18 months under care of the original team, Klaus' body was not monitored with an MRI or CT of his head/neck or lungs to look for metastic spread. After 17 months and 2 surgeries, we finally met our 1st oncologist for an evaluation. 
MEDICAL TIME LINE:
*January 2007-pea size lump found in gum of lower left jaw
*May 2007-1st surgery removing lump-margins not clear, confusing pathology
*January 2008-reoccurence noted but watchful waiting advised--not surgery
*May 2008-Parent's decide to push hospital to remove lump and suspicious lymph node against advise of medical team. Pathology confusing again.  Disease confirmed in lymph node. Medical team advised no further treatment--margins not clear.
****At this point, we began to search for experts in sarcoma for help. Consulting with 30 doctors and institutions across the USA & world. Making sure we are not missing anything to cure this. Discussing surgery, radiation and chemo.
*August 2008-Klaus' care is moved to Rocky Mountain Pediatric Hematology Oncology at Presbyterian/St. Luke's in Denver, CO--Dr. Jennifer Clark. Tracking lymph nodes, oral structure and lungs.
*January 2009-Enlarged lymph node & new lump in mouth noted so together we consulted with multiple sarcoma institutes in USA.
*March 2009--3rd surgery--found 2 more tumors wrapping around critical facial nerves. Because of complexities, surgeon was unable to remove all disease.**We decide to seek care from a specialist in sarcoma & pediatrics--Memorial Sloan Kettering Cancer Center in NYC.
*May 19th, 2009--4th surgery--12 1/2 hours. Disease had spread throughout his jaw, eroding his jaw bone, going thru nerve channels. Surgeons removed the lower left mandible, two nerves, 6 teeth, facial muscles. Replaced the jaw & the tissue lost with his fibula, a complete neck dissection. Disease was tumors, large & small microscopic disease, lymphovascular (disease in the walls of the blood vessels to the lymph system) Finally, clear margins were reported but one small spot.
*December 2009-5th surgery to remove infected gum tissue & tooth-jeopardizing his jaw. Clear pathology.
*March 2010-6th surgery-a lung thoracotomy-disease confirmed in his lungs. Multiple bilateral lung mets. 
*March 2011-7th surgery-dental reconstruction surgery--3 implants set with dental bridge on top.

   We constantly review the risks,benefits of chemo, radiation, & surgeries for a cure. Unfortunately, these options have more toxic side effects compared to living with this chronic condition.

SVG_Icons_Back_To_Top
Top