Haven: Neuroblastoma Cancer and ROHHAD Syndrome

Pulmonary visit

2011-10-07T07:38:00.000-04:00

Well we had a pulmonary visit yesterday. Nothing new to report. This was a pre-sleep study visit. Haven's next sleep study is on October 14th. She has had some crazy snoring so we started her on Flonase each night. It's actually a different name but I can't remember it because it's so long. But it's practically the same thing as Flonase.

She is home from school today due to the flu mist being administered at school. She now weighs in at 86 lbs and 45" tall.

Back To School Night

2011-10-04T11:58:00.000-04:00

We were very excited to go to Haven's back to school night. She was looking forward to it. Wanted to see all her old friends and meet her new teacher. So far she is doing an excellent job. She has had two tests and both of them were 100% .... so we've done a bit of a party dance.

I was hoping Haven would be enjoying school as much as last year but she says she is a little bored and it's just not interesting. So this is a bit concerning to me. She reads like a crazy woman and I think it's just not challenging enough for her. Not to mention she really argues with us about having to do PE class. So on with the rest of the year. Teacher conferences are coming up.

She will be home half of this week due to the flu mist at school. She is not allowed to attend because she has a weak immune system.

Oncology visit

2011-10-04T11:55:00.000-04:00

Haven's last Oncology visit was August 26th. We had hoped, as mentioned before, that her numbers would magically go up and she'd be able to have surgery to remove her port and no more IVIG. This was not the case. It was her first visit without her old nurse. It was a bit stressful for her and I stayed with her for the day.

Excellent view of the port with the access needle in it.

She did very well. We were there until about 4pm. Her next visit is October 24th. We will meet with her Oncologist at that time to review Haven's progress and probably get a flu shot.

AFLAC - Friends of a Feather - Fighting Pediatric Cancer

2011-09-30T08:54:00.003-04:00

AFLAC FRIENDS OF A FEATHER

Friends of a Feather is the umbrella program under which Aflac conducts our Pediatric Cancer philanthropic initiatives: from critical research and medical care, to emotional support for children and their families. We invite other organizations, companies and individual to join us in our fight against all forms of childhood cancer.

Giving back to the community is an everyday part of what we do at Aflac. We've passionately supported the fight against childhood cancer for 15 years. Over our philanthropic history, the extended Aflac family has given more than $65 million to childhood cancer through our relationship with the Aflac Cancer Center and Blood Disorders Service of Children's Healthcare of Atlanta. The Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta is a national leader among childhood cancer, hematology, and blood and marrow transplant programs, serving infants to young adults. Recognized as one of the top childhood cancer centers in the country by U.S. News & World Report, the Aflac Cancer Center treats more than 350 new cancer patients each year and follows more than 2,500 patients with sickle cell disease, hemophilia and other blood disorders. No relationship has been more meaningful to Aflac than the one with the Aflac Cancer Center.

If you are on FB you can check here: AFLAC Duck - Friends of a Feather

Or Share the cause here: AFLAC Friends of a Feather Cause for Childhood Cancer

We donated for our baby girl...can't wait for her to get her little ducky!!! She loves these commercials!

SEPTEMBER -- CHILDHOOD CANCER AWARENESS MONTH

2011-09-30T08:04:00.000-04:00

We will continue to wear gold and push to help people become aware of childhood cancer....

Cancer is cancer and all must be supported but to us boobies are a luxury and our children are our future.....we need some funding and we need the research....

THANK YOU MATT'S HELPERS FOUNDATION!!!

2011-09-27T12:19:00.001-04:00

Haven received a beautiful box full of Halloween goodies and gift cards from Matt's Helpers Foundation!!!

THANK YOU SO MUCH

What a Summer.....

2011-09-21T07:45:00.000-04:00

Earthquakes, hurricane, and a tropical storm.....but we made it through. Not to mention a week without power really really sucks......

Conowingo Dam near our house before the flood. We drove over the dam and I took this photo

During the flooding they had to open the gates

Ellicott City Maryland

Hershey PA

Somewhere in NY

Photos from the flooding in the area from Tropical Storm Lee.... we now await our first blizzard......

SEPTEMBER -- CHILDHOOD CANCER AWARENESS MONTH

2011-09-19T13:14:00.000-04:00

WHAT YOU SHOULD KNOW:

1.  Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined.

In 2006 approximately 9,500 new cases of pediatric cancer occurred in children between the ages of infancy through 15.

In the United States in 2007, approximately 10,400 children under age 15 were diagnosed with cancer and about 1,545 children will die from the disease. Although this makes cancer the leading cause of death by disease among U.S. children 1 to 14 years of age, IT IS RARE.

My daughter is part of the 2007 statistic!!!!

2. The causes of childhood cancers are largely unknown.

3. One person out of every 330 will develop cancer before age 20!

4. Each day, 46 children are diagnosed with cancer.

5. 35% of children cancer patients will die

6. On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient.

7. This year, acute lymphoblastic leukemia, a cancer of the white blood cells, will be diagnosed in about 3,000 U.S. children, making it the most common pediatric cancer.

8. Cure rates for some pediatric cancers remain below 50 percent.

9. The 10 most common types of childhood cancer are as follows:

Leukemia (acute lymphoblastic leukemia and acute myeloid leukemia)
CNS, brain, and spinal cord tumors
Lymphomas, (including Hodgkin and non-Hodgkin lymphoma)
Skin cancer and melanomas
Soft tissue tumors (including rhabdomyosarcoma)
Germ cell tumors
Neuroblastoma
Bone cancers (including osteosarcoma and Ewing sarcoma)
Renal cancer (including Wilms tumor)
Retinoblastoma

10. Neuroblastoma Cancer has a 69% survival rate at 5 years!!!!!!

Beginning treatment and seven surgeries

Three weeks after high dose treatment

Two months after high dose treatment

Three months after high dose treatment

Five months after high dose treatment

Haven's Make A Wish Party

Two years and two months later.....still receiving treatment

We reserve September to Childhood Cancer Awareness Month and hope you share our message with your neighbor! All our love......

To our many friends we have met on Facebook....We share your pains as your children go through treatment. Know that we are with you and understand completely what it is like to have a child with cancer and you have no control. As a parent your job is to keep your child safe and to protect them....yet you are forced to give them chemicals.

Love to all of you

COOKIES FOR KIDS CANCER

2011-09-19T12:49:00.000-04:00

FROM THEIR FACEBOOK PAGE

Starting tomorrow, CNN Headline News will feature Cookies' Founder Gretchen Holt Witt in the ongoing series Breakthrough Women. The piece highlights her vision and work making a difference in the world of pediatric cancer. See below for the schedule:

Tuesday 9/20
7-8P (Jane Velez-Mitchell show)

Thursday 9/22
8:30-9A (Morning Express)

Friday 9/23
Posted on: www.cnn.com/CNN/Programs/morning.express/

Sunday 9/25
10:30-11A
3:30-4P

FIND OUT MORE AT COOKIES FOR KIDS CANCER

The Blanket Fairy - Ellen DeGeneres

2011-09-19T12:40:00.002-04:00

VISIT THE BLANKET FAIRY FOR MORE INFORMATION

Childhood cancer mortality and radon concentration in drinking water in North Carolina.

2011-09-19T10:28:00.003-04:00

ONLY 12 DAYS LEFT FOR CHILDHOOD CANCER AWARENESS MONTH

HEY NORTH CAROLINA --- ARE YOU AWARE?

NIH RESEARCH IN NORTH CAROLINA

Are You Aware? SEPTEMBER CHILDHOOD CANCER AWARENESS

2011-09-15T07:28:00.000-04:00

What would happen if a gunman went in to a school today and shot 46 kids?

What if seven of them died?

It would be all over the news.

Now imagine that this happened EVERY day of EVERY week…..what would the outcry be?

Well, instead of a crazy shooter this is the world of Childhood Cancer.

It never sleeps and it never takes a holiday.

SEPTEMBER -- CHILDHOOD CANCER AWARENESS MONTH

2011-09-06T10:11:00.000-04:00

If you know me....then you know a child fighting cancer.

Hurricane Irene...photos and stuff

2011-08-30T19:25:00.001-04:00

While we still have no electricity (since last Saturday) I thought I'd update from Starbucks. Here are a few photos that I have either taken or collected from various sources.

This is a photo of the Bay that I took on Friday evening - before the storm hit us. We live only a mile or 10 miles from the bay depending on which direction you want to go.

The morning of the hurricane as it gets closer

This is about 3/4 of a mile from our house.....skies are darkening

Anticipation of the storm brewing......

Practicing making our own candles

Making our own refrigeration unit...this worked very well as the real fridge started dying and the winds were whipping through

Night life by lanterns and flashlights

Haven was terrified of the winds and darkness...she slept in the rocker next to me.

My little peach tree only made it a few hours

All street lights were out for days....as of Wednesday most are finally back on

We went driving around the back roads on Monday looking for ice......

Did I mention we waited in line 40 minutes for ice after heading to PA to get it.......

Little bar near our house

hotel swimming at it's finest

wrong way.......

Random photos around Harford County of trees and power lines down

Power lines down everywhere.....

Not getting power anytime soon

Not traveling up this road

Susquehanna mill......

Power lines holding up the tree

Wrong way again....

Unlucky house in Aberdeen......few miles from us

Aberdeen High School.....

On Old Robin Hood Lane....only down the street...we love this scenic road

Off Paradise Road...pratically our back yard

The Golf Course....

Another unfortunate Aberdeen house

And our power company.....BGE ---- They're on it!

While we sit and wait for power and hot water.....Haven is still out of school. It was supposed to start on Monday and we are now at day 3 of the 6 days allotted for weather.....After last week's earthquake and hurricane we are sure to get a few blizzards this winter!!!!

Growth Hormone Deficiency

2011-08-26T14:00:00.001-04:00

Growth Hormone Deficiency (GHD) is generally due to the pituitary gland being unable to produce sufficient GH to generate the growth process. GHD does not affect intrauterine growth, at least to an extent measurable by birth weight or length, but from the second year of life growth is slower than normal and occasionally growth failure commences from birth. Most cases of growth hormone deficiency are idiopathic, meaning of unknown origin. Idiopathic growth hormone deficiency occurs, it seems, in about 1 in 3800 births.

We met with Haven's Endocrine doctor on June 20th and discussed Haven's need for growth hormone. She has stayed in the 5 percentile since Hi CY. We decided we would check the levels and see where she is. We received an email that Haven is at a level 71. A normal IGF-1 level would be around 250 or so - with a very low at an 88. Normally, a child grows about 2 inches per year. A child with growth hormone deficiency usually has a growth pattern of less than 2 inches per year. In many cases, the child grows normally until he or she is about 2 or 3 years old; then, signs of growth delay begin to show. We were told that Haven will need to grow 2 inches by December in order to not be put on the GH treatment.

Haven may have to do a stimulation test before treatment. What is this?

GH stimulation tests help to diagnose GH deficiency and hypopituitarism. For a stimulation test, a sample of blood is drawn after 10-12 hours of fasting. Then, under close medical supervision, a person is given an intravenous solution of insulin or arginine. Blood samples are then drawn at timed intervals, and GH levels are tested in each to see if the pituitary gland was stimulated by the insulin (or arginine) to produce expected levels of GH. Other GH stimulants include clonidine and glucagon.

Treatment?

Growth hormone deficiency can be treated with growth hormone replacement therapy. A drug called somatropin or growth hormone (Nutropin, Genotropin, Norditropin, Saizen, Humatrope) is injected into the fat underneath the skin. Shots are usually given daily.

As of now, we are on hold until December. We will make the final decision then to put her on the daily shots for the next 5 years.

These treatments are EXTREMELY expensive and have me a little concerned. We spent $11,000 out of pocket one year and were told it wasn't enough for a tax write off. The Growth Hormone treatments can cost us between $10,000 and $40,000 a year depending on insurance. Guess there is no need to stress yet.......