Friday, January 28, 2011

Johns Hopkins and Mix 106.5


This is Johns Hopkins....the ONLY hospital that would listen to us and actually helped us save our daughter.

In October 2007, Haven was rushed to Hopkins after suffering a 45 minute seizure. She saw at least 15 different specialists and went through numerous tests within a 10 day stay at the hospital. We had one doctor that said he would help and he's been with us since - Dr. David Cooke.

In December 2007, we were informed that our daughter had Neuroblastoma Cancer and there was a large tumor in her abdomen squeezing the two main arteries to the heart. She would have to undergo surgery. In February 2008, after weeks of MRIs, MIBG tests, and CT scans Haven was ready for surgery. Little did we know it was going to be a 14 hour surgery!

In the following weeks Haven had to regain strength in her lungs and prove to the doctors that she could get off the oxygen.

After a couple of weeks Haven returned home with us. A large scar from one side of her stomach to the other, two large holes in her lower back to withdrawal bone marrow, and a bandaid over the section in her spine where they withdrew spinal fluid. Still my baby had a smile on her face!

Little did we know what the next few years would have in store for us. We have practically lived at Hopkins (4 days a week) and she has gone through numerous trials of chemotherapy and to date 7 different surgeries.

Haven heading in to one of her surgeries. There have been so many I don't know which photo is for which surgery anymore.

Hopkins staff has always been great to Haven.....from the beginning she was allowed to give herself her own anesthesia. :)

Then we started all the chemotherapy. These can last up to 7 hours for each dose.

Haven after having another surgery. She really wanted a this was as good as it could get for a while.

After having eye surgery to correct her strabismus she remained in the hospital for about a week.

Haven heading in to another surgery to get a second port line added.

In June 2009, Haven began an intense therapy of High Dose Cyclophosphomide. This was to remove the bad immune system and give her a new one. As Hopkins calls it - Rebooting the Immune System.

Still my baby fought her way through it and continued on.

Her last surgery so far was in September 2009 - she had her 2n d port line removed. She is still continuing with treatments of IVIG every 6 weeks. I can guarantee we wouldn't have our daughter if it weren't for the care at Johns Hopkins and the doctors involved. I thank them all the time for giving me back my girl.

Then we filmed Mystery Diagnosis and I met a wonderful lady at Hopkins who also does their PR. She emailed a few weeks ago asking if we would do an interview at a local radio station for the Johns Hopkins annual radiothon. It is the same event I signed up to raise money for. Of course we said YES.

This is Haven at the CBS Radio studios in Baltimore.

We sat down with JoJo and Reagan from the Mix Morning Show and did our interview. We had a lot of fun and it was great to meet these two guys and to see what it looks like in the radio station. THANK YOU MIX 106.5 FOR SHARING OUR STORY AND LETTING US BE A PART OF THE RADIOTHON! of today......we are at 89% of our goal....what's going on everyone! I really thought 500 people at $1.00 a piece was an easy contribution to a hospital that helps so many kids. Not even kids that go to the hospital but from around the world!

I'm just going to point out that the first donation below came from a mom whose daughter also has ROHHAD and they live in SOUTH AFRICA!!! Will probably never go to Hopkins but still donated!!!

So I ask again - especially our FAMILY! We need your donations! This is the hospital that saved our little girl's's a tax write off and who doesn't need that!

Below are the very appreciated donations Johns Hopkins has received on behalf of Haven. PLEASE DONATE! If you never donated this is the time to do it.....if you want to donate but don't know how it's easy! CLICK THE GOAL COUNTER ABOVE! It's a direct link. Or click the DONATE NOW button at the top of the page!

Thank you to everyone above....we truly appreciate it!

1 comment:

  1. What an amazing story! I'm sure you're so proud of all she's accomplished,way to go haven!