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Hope Kids by Haveyroo Posted in: Blog Posts in Cancer We're so happy our friends told us about this great organization that helps children with cancer or other life-threatening diseases.  We have met so many people now and h ... Read on »
Haven on Mystery Diagnosis by Haveyroo Posted in: Blog Posts in Cancer ROHHAD Mystery Diagnosis if you click this link you can see Haven's TV show we did on Mystery Diagnosis about ROHHAD Syndrome in 2010.  I was a few months pregnant with our ... Read on »
Sophia on round 3 of IVIG for ROHHAD by Haveyroo Posted in: Blog Posts in Cancer Last week Miss Sophia (check out her site at Sophia's Journey) had another round of IVIG.  Her mother has been tirelessly working to get Miss Sophia to Hopkins for the pa ... Read on »
Reagann........hanging at Ronald McDonald House in Baltimore by Haveyroo Posted in: Blog Posts in Cancer This is Reagann with her mommy.....they both had their hair done before Reagann started to lose hers. This is our friend Reagann at the Ronald McDonald House in ... Read on »
ENDOCRINE UPDATE by Haveyroo Posted in: Blog Posts in Cancer Haven is currently on some medication for an infection – the medication is a 12 week medication requiring her to get her liver checked every 4 weeks.  This medication can ... Read on »
HOME INVASION ---- share to catch this guy by Haveyroo Posted in: Blog Posts in Cancer New York News | NYC Breaking News Read on »
Sophie's Journey by Haveyroo Posted in: Blog Posts in Cancer This is our friend Sophia.  She has been a long time friend of Haven's and we love her family dearly.  Lately Sophia has been struggling with getting help from doctors and h ... Read on »
Endocrine by Haveyroo Posted in: Blog Posts in Cancer So we have a new Endocrine doctor.  I'm becoming a pro at new doctors.  She has worked with a ROHHAD child and understands the ins and outs.  I have all of Haven's latest la ... Read on »
Nurse Patel ----- 2009 and 2013 by Haveyroo Posted in: Blog Posts in Cancer As Reagann was getting ready to enter in to isolation at Hopkins I told her about a wonderful nurse Haven had in 2009 during her isolation stay.  This is Nurse Patel.  She w ... Read on »
Pediatric Oncology by Haveyroo Posted in: Blog Posts in Cancer If you've never had to go in to a Pediatric Oncology room or visit a floor you should count your lucky stars.  It's one of the worst places we have been in for the past 6 ye ... Read on »
IVIG Day.....spending the day at Primary Childrens by Haveyroo Posted in: Blog Posts in Cancer We are spending another day at Primary Childrens.  Today is for a round of IVIG.  Haven's levels were around 220 this time. We've been doing this now since 2007.  Yes i ... Read on »
ROHHAD - REAGANN NEEDS LOVE!!!! by Haveyroo Posted in: Blog Posts in Cancer HI FRIENDS...Reagann has just had surgery for her PICC line and is doing great. She has an address in isolation room at Hopkins now. This is the same place Haven was i ... Read on »
Another day at doctors by Haveyroo Posted in: Blog Posts in Cancer Well I haven't had to say we've been at the doctors much lately.  But I seem to be spending some time in there lately.  Haven has some crazy infection in her toes - back in ... Read on »
Haven visits Oncology by Haveyroo Posted in: Blog Posts in Cancer Yesterday we spent the morning at Primary Children's getting more labs.  We checked her IGG levels, Calcium, and did a full panel on the liver.  There are a few questions ... Read on »
Catching up on Haven by Haveyroo Posted in: Blog Posts in Cancer I feel like I never have time to write in her blog anymore and it's always a catching up thing....with three kids it's a bit harder.  Now that the other two are becoming mor ... Read on »
ROHHAD: Kira - 9 years old - passes away :( by Haveyroo Posted in: Blog Posts in Cancer Kira, 9 years old, gains her ROHHAD angel wings Dearest friends....it is with a heavy heart and sadness that I must share that one of our sweetest and dearest friend ... Read on »
Wild About Reagann by Haveyroo Posted in: Blog Posts in Cancer Reagann is the 4 year old daughter of Joe & BJ Duenne of Charleston. She has a very rare disease called ROHHAD Syndrome (Rapid Onset Obesity with Hypothalamic Dysfunction ... Read on »
Desert Dove Tea Room by Haveyroo Posted in: Blog Posts in Cancer Check out the Desert Dove Tea Room website in St. George, Utah.  Miss Haven was a featured story.  She had a great time there with her dad on her last trip out for Chemo. D ... Read on »
HAPPY 9TH BIRTHDAY HAVEN!!! by Haveyroo Posted in: Blog Posts in Cancer Happy birthday to my beautiful baby girl!!!!  Can't believe you are 9 years old today.  In your short 9 years you've managed to overcome cancer and survive some of the sc ... Read on »
Paria, Utah by Haveyroo Posted in: Blog Posts in Cancer  This is one of our favorite exploration areas in Utah.  The city is Paria.  It is a ghost town on the Paria River in Grand Staircase-Escalante National Monument.  ... Read on »