tag:blogger.com,1999:blog-91489738634822080722024-03-06T02:08:20.110-05:00Everything's Possible<br><br><br><br><br><br><br><br><br><br><br><br><br><br><br><br><br><br><br><br><br><br> An Australian boy's fight against Neuroblastoma, a lethal childhood cancerDylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comBlogger529125tag:blogger.com,1999:blog-9148973863482208072.post-67043354086840984972013-04-14T21:32:00.001-04:002013-04-14T21:32:38.927-04:00First hospital admission since arrival home to Australia<span style="font-family: Verdana, sans-serif;">We had a bit of a scare Thursday night. Dylan had chest pain so I took him to the emergency room. They thought he may have had a blood clot but then we noticed he was yellow. Then of course the fear that the cancer had progressed into his liver became a very real concern. He was admitted and the next day a liver ultrasound was done, and thankfully it turns out that he has a stone in his bile duct. Hospitalized and on antibiotics with surgery to remove the stone scheduled Tuesday. They said it may have been caused by past chemo or calcium leaking from the bones where the cancer is. Today is Monday and we are preparing for another liver ultrasound. I will update more when I get home to real Internet access and my computer. </span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-66232815747404737042013-02-07T03:08:00.003-05:002013-02-07T07:35:20.705-05:00FB takes over blog! Noooooo....<!--[if gte mso 9]><xml>
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<span style="font-size: x-small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-2PJKrkGWrmVLpJcLXFrRWcyaSa2G9nJ_Gk1tMFnMYzwXgC78__qovPrPQDzdrsoKpGNaET9rlzbWBAoqJPebJ3jVTs-_QdyEcGjczIh4njOJ0Z9RIFxv5LHZgd7k_8I9wl_owPheftmV/s1600/school+31.1.2013.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-2PJKrkGWrmVLpJcLXFrRWcyaSa2G9nJ_Gk1tMFnMYzwXgC78__qovPrPQDzdrsoKpGNaET9rlzbWBAoqJPebJ3jVTs-_QdyEcGjczIh4njOJ0Z9RIFxv5LHZgd7k_8I9wl_owPheftmV/s320/school+31.1.2013.jpg" width="240" /></a></span></div>
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">I have found that Facebook seems to be the fastest point for updates lately and
I feel bad that I should also put something up here too, so don't stress if you don't have a FB cause I will eventually get around to updates here when I can. As you know we arrived
back in Australia 5 months ago. Settling in has been a bit harder than
anticipated, I see now it will be a year or two in reality, to be budgeting
better and catching up on things. So far I tried Peter Mac Hospital for an
Oncologist there, but they referred me to Monash as they do not do pediatric
bone marrow biopsies and they feel Dylan would be better having everything done
in the one place ie: The Royal Children’s or Monash, which are both linked with
the same team of oncologists. As everyone knows, I have great hesitation of
running into 3 previous oncologists who were involved in Dylan’s case for the
first 6 months. I was assured that I could meet with Dr Moore instead and not
deal with those particular doctors. After dealing with my personal feelings
about even dealing with the team members from the Children’s, I went in with
the professional not personal attitude. I was greeted with open arms by Dr
Moore who was a fellow at the time of Dylan’s diagnosis and remembered us. She
is a young oncologist but has a very sincere nature which was very comforting.
She explained that she remembered thinking how hard it must have been for us
being in the position we were in and that mothers know best. I was very
relieved to find that Dr Moore was not like the other doctors I had dealt with
in the past. Monash is also only 5-10 minutes away from us. They have built a
cancer wing for pediatrics and it was very nice in comparison to our earlier
experiences of cancer care in Australia. Dr Moore said she will contact Dr Modak for Dylan’s
records and his recommendations. She told me she would be foolish not to
utilize the advice from Dr Modak. I then got an email from one of the nurses
who delivered a lot of Dylan’s chemo at RCH when he was first diagnosed, saying
she is now working at Monash and will be making Dylan’s work up schedule and
she can’t wait to see us! I am so relieved. A full baseline work up will be
done in the next 4-8 weeks allowing time for Dylan to settle into school, as
the work up will mean 4-5 days off school. </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">We have started on Dylan’s dental
care here too. We see a community dentist who has already done a cleaning and
filling and will work with him over the next 12 months on filling the rest of
the fillings in almost every tooth. He is on high fluoride toothpaste and tooth
moose to try and repair the damage caused by the chemo. X-rays revealed the
usual short roots on the teeth that chemo is known for, but also he has an
impacted tooth. As his dentist works on his fillings we will wait for an
orthodontist referral at the dental hospital in the city to see if it needs to
be surgically removed or if it can be left alone. This referral can take a few
months to get, which is fine since he is in no discomfort by it. </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">School, the
next big hurdle had me stressed out to the max. We decided on a high school
quickly, given the area and that we knew kids going to the school. After
visiting the school and seeing their wonderful music program, the deal was
sealed. I knew it was the right one just by the native trees and plants that
enclose around the school, the smell was so fresh and so Aussie :) Cain has 12 credits from New York towards his VCE so
he was able to go straight into year 12 as he only needs 16 credits to graduate
(in other words he only needs to make 4 credits this year) He of course choose
music in his curriculum, along with psychology, business management, math and
mandatory English. Cain continues to aspire to going to VCA (Victorian College of the Arts) after he completes year 12 at the end of
2013. Cain settled in fast, a week last year at school as a year 12 orientation
and he had his phone blowing up with texts and calls, and all of a sudden it
went from Cain being home all the time to, see ya mum! He already has a
girlfriend and I think he is pretty content with life right now. It’s actually
so awesome having an 18 year old…he’s a legal adult here in Australia. I thought I would freak out when he grew up, but I
love it now. </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Dylan has been down in the dumps, it’s hard for him to understand
the concept of time being a huge factor into our lives changing here. He thought
when he left New
York he would
instantly have this “new life” I think. He struggles with boredom, but that was
the same in New
York too. He
had an orientation day at school, year 7, and he came home in tears, it broke
my heart. He said they encouraged him do sport and he couldn’t, but they kept
saying to give it a go, then he felt embarrassed not to, so he did and then he
was in lots of pain. Between then and the 6 weeks until school officially
started I was a mess with the worry of how Dylan was going to go at school.
Well, he started last week and I am in total shock. He has done brilliant! Up
early, showered, teeth brushed and lunch made! Under my advise, sport has been
removed from his curriculum and replaced with an extra home economics class or
Japanese class. As you know cooking and the Asian culture is Dylan’s keen
interests so he is very happy with this arrangement. He goes to school with
Jenni’s nephew Max, and they are good friends which has made the transition
even better. Yesterday he told Cain to keep doing whatever it is he is doing
cause he is making him popular LOL. Cain said what do you mean and Dylan said
well everyone keeps asking if Cain with the tattoos and plays bass your
brother? And when he replies yes they smile and say, cool LOL. Dylan came home
last night with some English homework, brainstorm as part one and write your
biography as part two. Dylan huffed and puffed and gestured the sheet of paper
to me, saying that he can’t do it because it doesn’t apply to him and the
teachers don’t understand, that they got frustrated with him. I looked at the
paper. Seemed simple enough, and Dylan has a great autobiography to write
about! I tried to explain that although some questions don’t apply to him he
can improvise. I could see why he frustrated the teachers, he was frustrating
me! Then I realized that I could tell he really did want to do the homework but
he didn’t know how. But it was so simple, how could he not know how? So I
looked at the questions again, read them twice over, then it hit me! These were
some of the questions:</span></span></div>
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">·<span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span>Have you spent
time with your grandparents? What are your best memories of going to grandma’s
house?</span></span></div>
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</span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">·<span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span>Have you had a
very best friend? What adventures have you shared?</span></span></div>
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</span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">·<span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span>Did yours aunts,
uncles or cousins make time to have fun with you?</span></span></div>
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</span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">·<span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span>What was the best
family vacation you went on?</span></span></div>
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</span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">·<span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span>What is unique
about your family? Does your family have holiday traditions?</span></span></div>
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</span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Poor kid. He was looking at
the questions differently to everyone else, he was looking at them as a “normal
childhood” and he didn’t have that. So he just made up his mind that he
couldn’t do the homework. Best friend died in 2009 at age 13, can’t remember
much of my cousins or grandparents, etc, etc. So I then had to explain it to
him differently. Dylan you have the most interesting story to tell! We may have
never been on an official family vacation but we have been to America and traveled a bit around there at various times. You
may not have seen your cousins but you have 22 of them and you are
re-connecting now. Don’t you remember when Nana visited us in New York, and how she had a photo taken with Elmo. And we are
a very unique family, not because you have cancer but because of what we did,
we raised money and went on the news and in the paper, you met several celebrities
and even went to the movies with Nicole Kidman! I explained his biography is
here, right here on this blog, over 500 postings…writing an autobiography is
easy. After an hour in his room he proudly came out and said he was done. The
only other things he has said about school is that he feels he is too old for
the kids (he is 14) and the kids he is with are 12. In the same breath he
confessed he felt embarrassed because he found it hard to write as fast and
keep up with the work. I explained how hard it would have been in year 9 and
unfortunately year 7 is best for his academic needs right now. I also reminded
him that education is not mine or dads priority for him right now, that his
happiness and social needs are the priority. I don’t care if you come home with
all F’s as long as you have a smile on your face Dylan. His teacher called and
we had a chat, she said she will try and add him to a year 8 or 9 class during
sport to do Japanese or Cooking. I told her not to push him too much, to
remember he is hard of hearing and this is a huge change for him. I think it’s
going to be ok.</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Next on the list is trying to get on top of all the bills!
School has cost so much money, school fees, uniforms, books, more books and now
photo and formal and camp money! Geeez! Then there is a huge electricity bill
and my car breaks down all the time. It’s a normal life basically I guess. The
usual stuff, it’s nice to be this normal. 8.5 years Dylan has had cancer for.
July 26<sup>th</sup> will make it 9 years…who would have thought after he was
given 2-12 months to live in 2005. If you visit my Facebook you can see photos
of Dylan and life back home in Australia, click <b><span style="color: blue;"><a href="http://www.facebook.com/media/set/?set=a.4195907309339.156969.1634405230&type=3" target="_blank">HERE</a></span></b></span></span></div>
Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-78752656430615110652012-09-27T03:23:00.005-04:002012-09-27T03:23:50.291-04:00Home<!--[if gte mso 9]><xml>
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<span style="font-family: Verdana,sans-serif;">We are back on Aussie soil, living with my best friend Jenni since we arrived, until the house next door that her parents own, is
vacated by the current tenants. We will rent the house from her parents who
were our landlords many years ago when we lived in Caulfield. It’s been a very
strange feeling since we arrived. We are super happy, like we finally crossed
the finish line after the marathon of a lifetime. At the same time we have so
many things we have to get done, like the paperwork for official things needing
address changes, getting mobile phones, Medicare cards, Center link, Vic roads,
and picking up our personal belongings from the Customs
Center. We also have so many people
we want to visit, but I am not confident enough to drive too far yet, at least
until I get a GPS cause I forgotten where to go and lots of the roads have
changed. It feels so strange to know all the roads but not remember where they
connect to. I was lost one evening just driving locally and felt so awful
because I could not remember, that brought on my first melt down since arrival. </span></div>
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<span style="font-family: Verdana,sans-serif;">We had a BBQ with Tim’s family at his parent’s house last week and we saw our
first flock of wild cockatoos fly by since we arrived. We love listening to the
gargle of the Magpies and smell of the freshly mowed lawn. It is also so weird
to hear ourselves speak as we refer to things in the American way and catch
ourselves then switch back. The hardest things to get back into saying are
mobile phone instead of cell phone, Ta instead of thank you, Chemist instead of
drug store, shops instead of store, milkbar instead of deli, bottle shop
instead of liquor store and rubbish instead of trash...the list goes on and on.
I love being reminded of the Aussie slang like “you beauty, where’s the dunny,
you little ripper, fair dinkem, no worries, grouse and she’ll be right mate”. </span></div>
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<span style="font-family: Verdana,sans-serif;">Cain is settling in well, he has his drivers learners book to read, loving
watching the footy and met up with a band already who was looking for a
bass player. Dylan is appears to be very happy and much more out going since we
arrived. We have introduced him to Jenni's nephew today and they seem to be getting along well. Plan is they can start high school together so Dylan will have some more confidence to the whole "lets try school again" thing. He is experiencing all different Aussie food he had forgotten about. We have eaten fish and chips, red rooster and meat pies and I didn’t
realize how much I had missed prawn crackers from the Chinese shop! Then when I
went to Coles (supermarket) I lost my mind with filling the trolley (cart) with
all the snack foods and drinks we had missed, like cordial, twisties and bbq shapes. I even found that Milo
have a cereal now, had to buy that! Tim and I have spent most of our time outdoors,
it’s great to have a garden to sit in again. Next week we will be preparing the
house next door for us to move into, we need one of most things, but once we
have an income we can slowly build up again, third time is lucky hopefully. </span></div>
Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-82335031812666835492012-08-21T00:16:00.005-04:002012-08-21T00:16:45.266-04:00Latest Media<span style="font-family: Verdana,sans-serif;">Here is a a link to Channel Nine who did a short story on our up coming return home. Click </span><a href="http://news.ninemsn.com.au/video.aspx?tab=6&uuid=5a4adc6c-c289-45a7-b636-8a3d4c01cb68&fb_ref=s%3DshowShareBarUI%3Ap%3Dfacebook-like&fb_source=home_multiline" style="font-family: Verdana,sans-serif;"><b><span style="color: blue;">HERE</span></b></a>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-2228722402807401192012-08-17T23:13:00.001-04:002012-08-17T23:25:53.558-04:00TheTruth 365<div style="font-family: Verdana,sans-serif;">
Please read and support: <b><a href="http://thetruth365.org/" style="color: blue;">http://thetruth365.org/</a></b></div>
<div style="font-family: Verdana,sans-serif;">
<br /></div>
<div style="font-family: Verdana,sans-serif;">
The following is from their website ~ Facts most of us do not know but should...Please make sure you sign the petition page!</div>
<div style="font-family: Verdana,sans-serif;">
<br /></div>
<h2 style="font-family: Verdana,sans-serif;">
Cancer Facts</h2>
<span style="font-family: Verdana,sans-serif;">
It is impossible to measure the impact that
childhood cancer has on it’s victims and their families by using
statistics but research funding decisions are often based on
numbers. Here are some facts about childhood cancer for you to consider:</span><br />
<br />
<br style="font-family: Verdana,sans-serif;" />
<b><span style="font-family: Verdana,sans-serif;">Cancer claims the lives of more children each year than AIDS, asthma,
cystic fibrosis and diabetes combined. It is the leading cause of death
by disease in children and adolescents.</span></b><br />
<br />
<span style="font-family: Verdana,sans-serif;">Each year in the United States, approximately 13,500 children and
adolescents younger than 20 years of age are diagnosed with cancer,
that’s more than a classroom of kids a day.</span><br />
<br style="font-family: Verdana,sans-serif;" />
<span style="font-family: Verdana,sans-serif;">Approximately 2,500 children and adolescents die of cancer each year.</span><br />
<span style="font-family: Verdana,sans-serif;">One out of every 300 males and one out of every 333 females in America will develop cancer before their 20th birthday.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">35,000 children are currently in treatment for cancer.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Some 25 percent of all children with cancer die.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">The causes of most pediatric cancers remain a mystery and <b>cannot be prevented.</b></span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Childhood cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">About one in 500 young adults is a childhood cancer survivor.
Nearly 2/3 of the survivors later experience significant and chronic
medical problems or develop secondary cancers as adults that result from
the treatment of their original cancer.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">In the past 20 years <b>ONLY ONE</b> new cancer drug has been approved for pediatric cancer.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Incidence of invasive pediatric cancers is up 29 percent in the past 20 years.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">The average age of death for a child with cancer is 8, causing a
childhood cancer victim to lose 69 years of expected life years; a
significant loss of productivity to society.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Childhood cancer survivors are at significant risk for secondary cancers later in life.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Cancer treatments can affect a child’s growth, fertility, and
endocrine system. Child survivors may be permanently immunologically
suppressed.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Radiation to a child’s brain can significantly damage cognitive
function, or if radiation is given at a very young age, limiting the
ability to read, do basic math, tell time or even talk.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Physical and neurocognitive disabilities resulting from treatment
may prevent childhood cancer survivors from fully participating in
school, social activities and eventually work, which can cause
depression and feelings of isolation.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Researchers estimate that 51% of moms and 40% of dads who have a
child with cancer meet the criteria for “Acute Stress Disorder” within
two weeks of the cancer diagnoses.</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-8249991117311749522012-07-27T23:57:00.000-04:002012-07-28T00:58:25.470-04:006 weeks to go<div style="font-family: Verdana,sans-serif;">
Soon we will be home, it all feels so surreal. I thought the time would go slow, but it has actually just hit me, how very close we are now. We fly home on 15th September and arrive home 17th September. The 16th gets lost somewhere in the sky I guess. Sadly that's my best friends birthday (my Aussie Jenni) but we will celebrate and in some weird way maybe it's a good omen. We have been busy packing and making arrangements, I didn't realize how much there was and is to do before we leave. When I left Australia, it was easy, adrenaline pumped my way there to save my child, but the return home is different. Mixed emotions of leaving people behind here, anxiety of seeing people I have not seen in almost 8 years and excitement of just being on home soil again. Dylan is doing great, he is swimming at the free pool across from our apartment everyday and making the most of his summer. Cain is playing his bass and doing the usual teenage drama. My other best friend Jennie (Alyssa's mom) is in Florida to set up her new life there, I miss her so much. I have seen a few parents who have come in for scans, knowing it's likely the last time I see them. It's so emotionally draining, saying goodbyes have never been something that I am good at, and neither is change. You would think by now that I adapt well, but in all honesty it's very hard for me. Bear is set up for 30 days quarantine when he gets to Australia, but we can visit him twice a week. Dylan will have his last scans in the last week of August and we are making plans on an oncologist in Australia I will work with for Dylan's 6 monthly scans. A HUGE thank you to Jim and Qantas for helping to get us home and making plans for us. Also a HUGE thank you to our friends and family who are ready and waiting to help us transition into Australian life again. We will be staying in Jenni's living room and plan to visit friends and relatives for about 4 weeks before we start work. Tim and I do have a few jobs in the pipeline so we are confident financially that we can be in our own rental by Christmas. This is the plan anyway, things change, sometimes you just have to go where fate takes you, ride the waves and try and keep your head above water. More children have passed that we knew well, and this is only a reminder of the cloud that will always loom over Dylan's life. But it has not rained, so we will keep on as if everyday is sunny and live it to the fullest. Dylan is a long term survivor, 8 years of living with cancer (yesterday was his anniversary). He is so grown up in a lot of ways, and immature in others. Tonight he was talking about swimming at the pool and how someone asked about his scars. He told her happily, he said he does not mind, but he does not want people to feel sorry for him, he wants to be treated like "normal". If you don't get regular updates on Dylan's blog, I will be back, but as you can imagine, I am per-occupied with the whole move right now. I do update a little more on facebook, and you can always send me a message via my page :) </div>
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<br />Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-42498050350842863472012-04-18T00:35:00.003-04:002012-04-18T01:08:53.217-04:00The Hartung’s are coming home<!--[if gte mso 9]><xml> <o:officedocumentsettings> <o:relyonvml/> <o:allowpng/> </o:OfficeDocumentSettings> </xml><![endif]--><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:trackmoves/> <w:trackformatting/> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:donotpromoteqf/> <w:lidthemeother>EN-US</w:LidThemeOther> <w:lidthemeasian>X-NONE</w:LidThemeAsian> <w:lidthemecomplexscript>X-NONE</w:LidThemeComplexScript> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> 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mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} </style> <![endif]--> <p style="font-family: verdana;" class="MsoNormal">It’s time to announce the second biggest decision we have had to make, the first being to come to America for Dylan’s treatment. We have made the decision to return to Australia by the end of the year or a little earlier. This decision was not taken lightly and we have weighed out all the pros and cons of such a decision. I will attempt to explain it all as best I can. Everyone we have told and discussed this with so far has been very supportive and agrees completely with our decision.</p> <p style="font-family: verdana;" class="MsoNormal">Why we came to America for Dylan’s treatment in 2005</p> <p style="font-family: verdana;" class="MsoNormal">Dylan was 5 years old when he was first diagnosed with cancer, after 3 rounds of chemo, we were told that there was no more they could do and that they would not do surgery to remove the huge solid tumor in his abdomen that was wrapped around his aorta and straggling him from the inside. The reason they gave was because after surgery they had nothing to offer him for treatment for the cancer that was still in his bones, and that surgery would be a waste of time. We were told he had 2 -12 months to live, take him home and love him. After research we discovered MSKCC in New York who agreed to do surgery and that they had many clinical trials on offer after the surgery. Dylan had a successful removal of his entire tumor in February 2005. Dylan was 6 years old, and apart from long hospital stays, he was a happy kid who found enjoyment out of toys and celebrity visits, media interviews and the activities at the Ronald McDonald House.<span style="mso-spacerun:yes"> </span>Dylan has done a total of 15 rounds of chemo, radiation, 9 clinical studies and various other drugs such as Accutane, Celebrex & Thalidamide.</p> <p style="font-family: verdana;" class="MsoNormal">How life is now that Dylan is 13 years old</p> <p style="font-family: verdana;" class="MsoNormal">Dylan is now 13 years old, and his disease remains the same…Stable. This is something that we did not anticipate, nor the doctors either in Australia, or America anticipated. We thought that Dylan would either die in a few years or be cured.<span style="mso-spacerun:yes"> </span>By the end of 2012 Dylan will be 14 years old and we will have been here almost 8 years. Dylan has not been on any treatment for months and is doing great. We waited for hot 3F8 that was supposed to be “the one” and then we waited for the humanized 3F8 another one that was supposed to be “the one” and his body continues to reject that treatment. There are no treatments that appear to be having a huge positive impact on children with Neuroblastoma who are HAMA & HAHA positive.<span style="mso-spacerun:yes"> </span>We continue to follow treatments being done elsewhere and do not find any that would benefit Dylan right now. We are waiting for something that does not exist yet…a cure that works for Dylan. Some children these treatments have worked for, and many remain NED, or they did not work for them, and they have passed away. Dylan is in limbo and has been for many, many years. Dylan’s treatment is not only medical but also quality of life, especially if his life expectancy is short. Nobody knows when Dylan will progress, ever though progression of disease is anticipated and his chances of a full life is extremely slim. Dylan has been stable for 7 years, yes we had a few scares, but his urine markers have never raised and progression was out ruled in those cases. Dylan’s quality of life over the past few years has not been the way we like it to be. He stays in his room and plays playstation and sleeps. He does an hour a day of home schooling and has only internet friends. We never have any money to do anything when we are not at work and he is too old now for toys to bring a smile to his face. Dylan’s needs have changed. He is a teenager now. We feel that if we returned home our lives would be very different and Dylan’s quality of life would be much better. In Australia we will have a car, and we can travel to the beach, to the country, to friends and family. Dylan will have his cousins and his grandparents. We as a family will have more money to do things and be able to provide Dylan with the life we want him to have. </p> <p style="font-family: verdana;" class="MsoNormal">The reality of Dylan’s cancer</p> <p style="font-family: verdana;" class="MsoNormal">If Dylan progresses tomorrow, MSKCC will only have to offer us high dose chemo known as ICE. He will use his last bag of stem cells and he will be very sick. If his disease progresses rapidly, the chemo will only buy a few months. We do not know if that's how we would want Dylan to spend his last months. If Dylan progressed a week after returning to Australia, we could still do high dose chemo to buy a few months or we could be surrounded by friends and family, and be home. In saying this, Dylan may remain stable for 2 more years, or ten more or even fifty more. We just do not know and neither do the doctors. We are living with the “what if’s” and have been living like this for way too long. What if Dylan progresses, what if Dylan stays stable, what if we cannot get back into America if we leave, what if I get hit by a bus tomorrow, we just cannot live like this any longer.</p><span style="font-family: verdana;">In Australia we will live instead of exist. Why exist if you do not live your life. There is no point on Dylan having these extra years if he cannot live them. We asked Dylan if he wanted to go home. His response was “I thought I had to be in America to live” we replied that he used to have to be, he had to come here or he would have died. But now he can be alive in America or Australia because there is no more treatment here for a cure and if we wait for a new treatment, it could be years, and if a “cure” is found, we will move heaven and Earth to get him back here to have it. He replied “Hell yeah I wanna go home” I wanna go to Queensland, the family vacation we planned before I got sick and we will be able to do so much more things like Phillip Island, I wanna see the penguins again! I wanna see Nana, Gran and Pop and Uncle Rick and I wanna have a backyard. We told him by the end of the year we plan to leave and later that night he came to us and asked if we could go home sooner! </span> <p style="font-family: verdana;" class="MsoNormal">Did we stay too long? No we do not feel like we have. We had to give it a go for as long as we could and on an average Dylan has done more than one clinical trial a year to try and find the cure. But when is enough, enough. Do we do this for the next ten years? I always tell people who come to me for advice to follow their heart and their gut instincts, and now we have to take our own advice. We do feel this is the right decision, in our heart of hearts. We are going home on our terms, not because we have been told to, not because Dylan has died and not because the hospital recommends it…it is our decision and we have finally made it. Over the years we have seen many international families do the same as we have, and travel to MSKCC for their child’s treatment. Many of those children died, some were cured and went home, and others like Dylan went home with stable disease and continue their lives at “home”. We feel we have more than tried EVERYTHING possible and given it our best shot. It’s now our turn to go home and “live” and we are so grateful that we are doing this with Dylan and not taking him home to bury. </p> <p style="font-family: verdana;" class="MsoNormal">We have some concerns about where we will have Dylan’s basic medical needs tended to. We are not comfortable with the oncology team at the hospital in Australia he was diagnosed at. But there are other options we are exploring. We will just continue with his supplements and have scans done every 4 months or so to see where we are at. We are unsure about whether we will be able to return to the USA due to the complex visa laws, however I do believe in my heart that we can jump those hurdles and maybe return once a year for scans at MSKCC and stay a few weeks and return home like other international families do. We also have so many dear friends we want to visit and just love our oncology team at MSKCC and will want to see them. We will not have the financial hurdles to return, since we had health insurance that has finalized any debt at MSKCC now. We also have funds still in the Dylan Hartung Fund that will cover the costs of scans at MSKCC and any treatment we may want to do. In saying this, we will only do more treatment if it already has shown to make a huge difference to patients, Dylan has done his share of jumping on new clinical studies, now we will watch and wait from Australia. </p> <p style="font-family: verdana;" class="MsoNormal">Are we giving up?</p> <p style="font-family: verdana;" class="MsoNormal">No, we know one day a cure will be found, but we do not know when. Everything IS Possible, it’s possible Dylan will continue to be stable for many many years, it is also possible he may be called to heaven<span style="mso-spacerun:yes"> </span>in a few years. We are victorious, we had a 5 year old with 2 – 12 months to live. Now we have a 13 year old with stable disease and an unknown life span. We set out to save our son by going overseas, and we have done just that, we still have him. We may not have him cured but he is here and he is generally well. He does suffer some fatigue, have some hearing loss, bad teeth, short stature and some occasional leg pain, but they are small prices to pay to still have your life. Now he has to LIVE it.</p> <p style="font-family: verdana;" class="MsoNormal">Cain</p> <p style="font-family: verdana;" class="MsoNormal">I have to say that I truly do have the most amazing 17 year old in the world. I am so proud of the man he is becoming and could not have ever wished for a better son. As a parent we always question our parenting skills and if Cain is any example, then we know we did a great job. We knew that this decision was going to hit Cain the hardest. He is established here and is the only one out of all of us that actually has a life he is living. We dreaded telling him, we even held it back until after his service club travels with school to Alabama & Tennessee because we did not want to spoil his trip. To ease the burden, we decided to let Cain make his own decision. We explored the idea of him asking his godparents in Long Island if he could stay with them until he finishes his high school diploma in 2013. We did not ask them until we told Cain to see if that was an option he wanted to pursue. For us leaving Cain behind would crush us, but he is almost 18 and in Australia you’re an adult, and we were making huge decisions when we were 18. The day after his trip he went to rehearsal and on his return we sat down with him after dinner. I had made a pros and cons list for him to look at after we explained the decision and why we have made it. After a while of us explaining everything his eyes glazed over, and he gestured for us to stop talking and he began to speak.<span style="mso-spacerun:yes"> </span>He said that he completely agreed with our decision and that Dylan is not living his life with quality. He said that through everything we have been his rocks and he has done so well because he wants us to be proud. He said music is his life and that he has done so well at it because of us. <span style="mso-spacerun:yes"> </span>We all cried and told him how so amazingly proud we are of him and even though we would be heartbroken to not be with him, we want him to do what he wants to do, he deserves this choice. He said that he came to this country not knowing we would be here this long and he also knew that eventually we would go home with whatever outcome it may be. I handed him the pros and cons list of staying here a year longer without us and he pushed them away saying we came as a family and we leave as a family, that if anything ever happened to Dylan while he was not with him, he would never forgive himself. After more tears he went for a walk. It’s been a week now and he is doing better with the decision. He told me his teacher cried when he told him, and that his girlfriend is crushed. We have always told Cain that planning for his future here is hard and that at any given time we may leave, there may come a time when our visas are not approved or when Dylan’s medical condition changes. He is so smart and wise, and it’s so hard for him, but he knows that he will have a life back home and that he can return to the USA for his music career if he aspires to. He can audition for the College of the Arts in Australia and apply for scholarships to continue music schooling in the USA if he so wishes. Music is his life, and I believe that if you want to do something or you want to become the best your possibly can, then you will, whether you’re in America, China, Italy, Australia or Timbucktoo! The music world opportunities are definitely better in America, but there is no reason why he cannot continue his music career in Australia and return one day. </p> <p style="font-family: verdana;" class="MsoNormal">We are staying until the end of the year because of our rental lease and because we want Cain to have another summer at music camp. We also want him to finish the 11<sup>th</sup> school year. We also need to pay off our debts and gather Dylan’s medical records. We will only be bringing our personal belongings back, the cost of shipping furniture would be more than buying it at home. We of course no longer have a home…we lost it and our furniture, but will have a couple of plans in the pipeline on staying with friends and eventually renting a place to call home. It will take time but we will get there eventually. We have employment lined up and once we get cars we can start working. The trick is to get money to buy the cars to go to work LOL, or the job to get a loan to buy the car. We will iron out those details and soon be on our feet, after all, we are Hartung’s and we have amazing friends and family anxiously awaiting our return. We will miss New York and the friends we have made who have become part of our family. I am sure my future journal entries will reflect that.</p> <p style="font-family: verdana;" class="MsoNormal">I know this will spark many comments, emails and so on. Bare with me when it comes to replying :) Oh speaking of Bear, yes he will be coming home with us, of course! We cannot live without our Boo Boo Bear.</p>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-36087968315521523452012-02-19T22:42:00.002-05:002012-02-19T22:47:07.701-05:00HopeDylan's blood tests shows the HAHA (rejection of the humanized antibodies) is coming down! We test again in a few weeks, if it goes away we can start another cycle of the Hu3F8 treatment...fingers and toes crossed. Right now Dylan is enjoying his winter break for a few days in Long Island with the Maynard family. I have to say, as much as it is nice to not have a little person coming in my room asking me for food every few hours...I really miss him. He said he is having the time of his life, so I am really glad that he got the opportunity to have a little break.Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-3725999061461613962012-01-27T19:50:00.003-05:002012-01-27T20:24:24.285-05:00Disappointment leads to confusion<span style="font-family: verdana;">Dr Basu called me a little while ago, Dylan's scans are stable. She then told me Dylan has HAHA. She proceeded to say that he is the first patient to get a HAHA, to which I replied "well I told you if anyone would it would be Dylan" She said that I was right and that we will test his HAHA again at the end of February. Until then Dylan is suspended of the Hu3F8 study :( Dr Basu said he must have a good immune system. I didn't know whether to laugh or cry. I couldn't show emotion in front of Dylan after I told him, I didn't want him to feel like he had failed. Ultimately I cried once I was alone. We were so excited about this study, so happy we finally started and now...all gone. My head is swirling with thoughts. What do we do now? Wait I guess, test in a month. Part of me wonders if Dylan being HAMA positive for so long and almost immediately and the same with the HAHA, is this why he remains stable? Is his immune system so good that it rejects these antibody treatments. Is there a connection with him remaining stable all this time?<br /><br />I wish I had a crystal ball, I wish I knew when Dylan's cancer would progress, in a week? 10 years from now? Do we stay in New York? Do we go home? If we go home and he progresses can we get back into the USA to see our team at MSKCC??? I have no idea, honestly. We have come so far, new studies are in the pipeline, Dylan is not and never has been NED (No evidence of disease) If we go home where do we begin? Cain will be devastated again, Dylan's life may be in peril...I just don't know anymore. Big decisions, we have to talk with the team after his test in a month and see what they recommend, this will help our decision making. We re-apply for Visas in a few months which is also stressing me as it always does. I just feel empty, sick and confused. I am homesick but I cannot let that influence any decisions. We are set up here in New York and turning back now means starting all over again from the bottom literally. A place to live, jobs etc. I don't really care about that though, however I do care how that makes the kids feel. I also care that the main reason for being here is to try and save Dylan, get him treatment. Home there is nothing, no treatment options, no clinical cutting edge trials to try. Well I guess I just answered my own confusion right there, right here on his blog.</span><br style="font-family: verdana;"><br style="font-family: verdana;"><span style="font-family: verdana;">Home = No treatment & No hope for cure</span><br style="font-family: verdana;"><span style="font-family: verdana;">USA = Treatment & Hope for cure</span><br style="font-family: verdana;"><br style="font-family: verdana;"><span style="font-family: verdana;">Ok well writing helped LOL. Guess we speak to the team in a month after the HAHA test and see what treatment options are available next. Thanks for listening. I actually feel much better now that I put this in writing and feel like I knew the answers all along.</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-42349255526582634052012-01-26T12:23:00.002-05:002012-01-26T12:27:17.008-05:00Why is there no cure for Neuroblastoma?<div><span class="Apple-style-span" style="font-family:verdana;">I get asked this a lot and I think Band of Parents explained it best on their website...here is a copy...</span></div><div><span class="Apple-style-span" style="font-family:verdana;"><br /></span></div><span class="Apple-style-span" style="font-family:verdana;">Why is there no effective treatment for advanced neuroblastoma? The answer is simple and devastating: there is not enough money for research. Yet, consider this - since the 1950s the rate of children surviving leukemia shot from 10% to 80%. Similarly, the survival rates for other types of cancers, like breast cancer for example, have also improved significantly thanks to extensive research that developed innovative and less invasive treatment options. In contrast, children diagnosed with cancer are faced with woefully inadequate funding from the government – and a lack of interest from the pharmaceutical industry, because orphan diseases like neuroblastoma promise little or no profit. Unfortunately no profit leaves pharmaceutical companies with little to no incentive to develop treatments. Children diagnosed with neuroblastoma deserve better odds of survival on par with most other cancers. Cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. But pediatric cancers collectively receive less than 3% of the National Cancer Institutes $3.1 billion dollar annual funded research portfolio of 2009 (<a title="FY 2009 Research Funding by Cancer Type" href="http://fundedresearch.cancer.gov/search/funded?action=full&fy=PUB2009&type=site" target="_blank">more</a>). For every dollar spent on a patient with breast cancer, less than 3 cents is spent on a child with cancer. Aren’t children our most precious resource? How can you put a price on a child’s life?</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-25139684449887472172012-01-19T18:10:00.003-05:002012-01-19T18:23:17.242-05:00Cain's Amazing Poem<span style="font-family:verdana;">"I am from" by Cain Hartung </span><br style="font-family:verdana;"><br style="font-family:verdana;"><span style="font-family:verdana;">I am from Staff paper</span><br style="font-family:verdana;"><span style="font-family:verdana;">From Yamaha and Rickenbacker</span><br style="font-family:verdana;"><span style="font-family:verdana;">I am from the suburbs, the countryside and the city</span><br style="font-family:verdana;"><span style="font-family:verdana;">Sound of Cockatoo, sight of starless skies</span><br style="font-family:verdana;"><span style="font-family:verdana;">Smell of burning eucalyptus trees</span><br style="font-family:verdana;"><span style="font-family:verdana;">I am from the lemon tree</span><br style="font-family:verdana;"><span style="font-family:verdana;">The falling autumn leaves that gravity pulls to Earth</span><br style="font-family:verdana;"><span style="font-family:verdana;">But from homes sight they seem to be floating away to the atmosphere</span><br style="font-family:verdana;"><br style="font-family:verdana;"><span style="font-family:verdana;">I'm from Friday afternoon barbeques and midnight ER runs</span><br style="font-family:verdana;"><span style="font-family:verdana;">From Melissa and Timothy</span><br style="font-family:verdana;"><span style="font-family:verdana;">I'm from the "coming and going"</span><br style="font-family:verdana;"><span style="font-family:verdana;">And the "Forever Enduring"</span><br style="font-family:verdana;"><span style="font-family:verdana;">From "Always try your best"</span><br style="font-family:verdana;"><span style="font-family:verdana;">And "Everything's Possible"</span><br style="font-family:verdana;"><span style="font-family:verdana;">Nothing is free in life</span><br style="font-family:verdana;"><span style="font-family:verdana;">Quite the contrary</span><br style="font-family:verdana;"><span style="font-family:verdana;">In order to tread the road to success</span><br style="font-family:verdana;"><span style="font-family:verdana;">There's enormous amount of sacrifice</span><br style="font-family:verdana;"><br style="font-family:verdana;"><span style="font-family:verdana;">I'm from the land down under</span><br style="font-family:verdana;"><span style="font-family:verdana;">Fresh meat pies and melted Tim Tams</span><br style="font-family:verdana;"><span style="font-family:verdana;">From the sounds of heart rate monitors </span><br style="font-family:verdana;"><span style="font-family:verdana;">And adjusting beds</span><br style="font-family:verdana;"><span style="font-family:verdana;">From the person who is my motivation</span><br style="font-family:verdana;"><span style="font-family:verdana;">Innovation and Inspiration</span><br style="font-family:verdana;"><br style="font-family:verdana;"><span style="font-family:verdana;">I am from the North and South</span><br style="font-family:verdana;"><span style="font-family:verdana;">Both born in the Spring and Autumn</span><br style="font-family:verdana;"><span style="font-family:verdana;">My life runs through staff paper</span><br style="font-family:verdana;"><span style="font-family:verdana;">hitting it's high notes and it's low notes</span><br style="font-family:verdana;"><span style="font-family:verdana;">In time signatures I struggle to follow</span><br style="font-family:verdana;"><span style="font-family:verdana;">I am me and no one else</span><br style="font-family:verdana;"><span style="font-family:verdana;">I do what I can to make the best out of any situation</span><br style="font-family:verdana;"><span style="font-family:verdana;">But at the end of the day</span><br style="font-family:verdana;"><br style="font-family:verdana;"><span style="font-family:verdana;">I am from what my loved ones make of me</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-80934124444837613252012-01-15T15:10:00.003-05:002012-01-15T15:33:31.866-05:00Hu3F8 first dose<span style="font-family:verdana;">Dylan had his first dose of Hu3F8 (Humanized antibodies) on Wednesday. We started at 8am, Dylan was pre-medicated with Ondansetron, Vistrol, Claritin, Tylenol and Ranitadine. The infusion of Hu3F8 was for half and hour at 12pm. Dylan had one rescue of Dilodid IV. His vitals stayed good, his oxygen saturation and heart rate remained normal unlike with the regular 3F8 (made entirely of mouse antibodies). He sleep the entire time and only complained of chest pain at a 7 out of 10 pain level. They took an EKG and blood draws until almost 7pm, then we headed home. Due to the dilodid Dylan was unable to walk. Once home Dylan didn't eat his dinner and asked for pain relief for pain in the chest and stomach, he slept and by midnight had a fever of 39.4. I dosed him every 4 hours Tylenol (Panadol equivalent) and dilodid. The next day we went to clinic for blood draws and Dylan was in terrible pain in his legs, chest and stomach. Dr Modak ordered IV didlodid stat. After a few minutes his pain went from a 10 to a 6-7. He dealt with it ok and asked if I could take the IV dilodid home cause it worked better...yeah, not able to do that Dylan. They doubled the amount of oral dilodid to be given at home. Dr Modak explained that Dylan was the first child to have Hu3F8 at 4 times the dose and it seems Dylan experienced more pain than the past patients at lower doses. He also explained that Hu3F8 stays in the body for 48 hours and the pain should go by then, and it did. Hu3F8 is designed to stay in the body longer, that's the plan. There is a small percent of mouse antibodies in the humanized antibodies and that explains the pain. Dylan also complained of neuropathy (pins and needles sensation) in his hands and feet, so gabapentin has been started 3 times a day orally. Dylan explained this as "the glass feels like it has a weird texture in my hand" and I had to change his drink into a plastic cup." Even though this treatment is painful, it is way better than past treatments and especially chemo. You have to remember that this is not a toxic drug going into Dylan's body, that's the beauty of it. No nasty chemical or poison in his blood, it's an antibody that is teaching his own immune cells to kill the Neuroblastoma cells. It does not drop his counts needing blood and platelet transfusions, it does not cause him to be immune suppressed and exposing him to the risk of other infections. It doesn't make his hair fall out or make him vomit and loose weight. Dylan is totally back to normal now, however next Wednesday we do it again and he will face another 48 hours of pain. My little fighter, fighting the biggest fight of his life for his life. My little man, a brave super hero.</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-90591104431734377962012-01-08T02:16:00.002-05:002012-01-08T02:26:28.008-05:00Hu3F8We met with Dr Basu, a fairly new doctor to the MSKCC Neuroblastoma team, who is running the humanized antibody therapy study. We have signed all the consent forms and are set to start on Wednesday. Dr Basu explained that Dylan will actually be the first child to start at the 4 times the dose escalation. The good news is that Dylan can continue this treatment for 2 years and step up when the dose escalates, he can start again at the higher dose along the way. This is of course as long as he does not have any disease progression, serious side effects or develops a HAHA that doesn't go away. Dylan has a busy schedule Monday at hospital with multiple tests and then gets a rest Tuesday, with therapy starting Wednesday. He will have the HU3F8 intravenously every 8 days, with daily blood draws at the same time of day for 14 days, yes even on the weekends. After that I think he gets 2 weeks off from blood work, then it starts again for 14 days...I think. It's a little bit of a complex schedule with treatment falling on a different day each week, so I am just going to take it week by week. Dylan will scan every 4 weeks to see how it effects his disease. Fingers crossed, I will keep you all updated as we go along.Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-34697972306174180622012-01-05T14:44:00.004-05:002012-01-05T15:19:07.630-05:00Merry Christmas and Happy 2012<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivAGIlplASGPlg8yED5Gx65m6TOYvOD4JdsZVZtOWYDddXupTH07qRBitbHVOm7VMFgpOGl2K5rB6-dHq4pMIk37qIM1k3RHqesaYniN4P_z2BO0ZuYTY2DLfUPy4hoF-Lr2_MP-2lL4nY/s1600/dylan+and+Nana+2011.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivAGIlplASGPlg8yED5Gx65m6TOYvOD4JdsZVZtOWYDddXupTH07qRBitbHVOm7VMFgpOGl2K5rB6-dHq4pMIk37qIM1k3RHqesaYniN4P_z2BO0ZuYTY2DLfUPy4hoF-Lr2_MP-2lL4nY/s320/dylan+and+Nana+2011.jpg" alt="" id="BLOGGER_PHOTO_ID_5694242398019080930" border="0" /></a><br /><span style="font-family:verdana;">We had a wonderful Christmas with Dylan's Nana (In photo) and Cousin Odin, here for 4 weeks visiting from Australia, it had been so many years since we were able to spend the holidays together. They left New Year's eve and we welcomed 2012 with a quiet night at home, content with the ending of 2011. Thank you to everyone for your gifts and cards and thank you to the "Very family" who did their yearly Christmas fund raising in NJ for our family, which enabled us to get Cain a new itouch and catch up on the lingering bills of 2011.</span><br /><br /><span style="font-family:verdana;">2012 brings us a new Clinical study for Dylan, the humanized antibodies that we have patiently waited to get to triple dose for us to start. We are very excited but reserved at this being the cure. It's well worth the try and given the low side effects and research, it does sound promising and as we all know with this cancer, it is very individual to each patient and it just might be the "one". We venture into this treatment with the usual hope of every one we try, and pray that this is the right track for getting Dylan cancer free. </span> <span style="font-family:verdana;">It all started yesterday with blood tests for HAMA & HAHA, then tomorrow an EKG, MIBG injection, CT scan, then MIBG scan Saturday and Monday Echo, Bone Marrows & MRI of the brain. Dr Modak said we could start the treatment as early as next week! Dylan is ok with it, his main concern is the brain MRI, he hates them out of all the tests. He is very happy that commencing treatment means "no school" typical 13 year old! It has been a long time since we spent long days at hospital, and the thought is a little scary, but I am sure we will settle into the old routine like putting on a pair of old shoes we don't really like to wear. Dylan is actually sitting next to me right now singing "I don't have to go to school til Wednesday!" It may be the whole week in actuality if we do start therapy next week as planned. As he cuddles Bear, he asks me the schedule ahead and seems pretty fine with it. He really does amaze me so much.</span> <span style="font-family:verdana;">Well, I will fill you in on the treatment regime as soon as I know it and of course how he does with it. Humanized antibodies was developed because of the issue of children like Dylan who develop as resistance to the mouse antibodies (3F8) known as a HAMA (which Dylan has had for years) The new Humanized antibodies do have a risk of rejection known as HAHA but it is minimal and so far goes away pretty fast with the kids who have developed it. The Humanized antibodies have also been "tweaked" to make then much more effective with receptors and other technical things I don't really understand. When they start new therapies the dose is very small, but now they are up to triple dose and since Dylan has run out of other options, we are going to start at this dose. Dylan's cancer remains stable in his hips, pelvis, spine and femurs, and it's a race against time to get it gone before it progresses. We have been so fortunate to have him stay stable for so long, and we certainly want to keep it that way or even better, a cure! 7 years in treatment in New York, it's been such a long road so far.<br /><br />2012, is this the year we have been waiting for?<br /><br />Click <a style="font-weight: bold; color: rgb(51, 51, 255);" href="http://www.mskcc.org/pediatrics/pediatric-clinical-trial/11-009">HERE</a> to read about Hu3F8, Dylan new treatment.<br /><br /><br /></span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-33754851208266627232011-11-10T21:59:00.003-05:002011-11-10T22:31:24.782-05:00Dylan is now officially a teenager!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCtdhzcCT7DpzMx_gagI4O0QpgIfBLlp0m9k2OUf3f44Vrny6NY-j4ppPi7Ad2pDadpt8EQdSXBzERWTZ70RXrC3xSKaTnxcHiwUixdqAE7sVoG8dNe-YGe73dZQW482g7mFjKeuCrosGK/s1600/IMG_1919.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 269px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCtdhzcCT7DpzMx_gagI4O0QpgIfBLlp0m9k2OUf3f44Vrny6NY-j4ppPi7Ad2pDadpt8EQdSXBzERWTZ70RXrC3xSKaTnxcHiwUixdqAE7sVoG8dNe-YGe73dZQW482g7mFjKeuCrosGK/s320/IMG_1919.jpg" alt="" id="BLOGGER_PHOTO_ID_5673569770675314402" border="0" /></a><span style="font-family: verdana;">Wow 13 ~ I can't believe it! Over 7 years ago, I would not have ever thought Dylan would be a teenager, of course I hoped it and I have fought for it, but as a cancer mum, it's a huge milestone. Dylan is still fighting cancer, since he was 5 years old, he has never been cancer free, and has had cancer for more than half his life, but he is here and he is now a teenager with cancer, not a kid with cancer.<br /><br />It has brought up many emotions, not only for Tim and I but also for Cain. He hugged Dylan last night, crying and telling him how much he loved him and how he is "his" hero. Then of course, that made </span><span style="font-style: italic; font-family: verdana;">me</span><span style="font-family: verdana;"> cry!<br /><br />OK it's time for the birthday story LOL, 13 years ago I was booked in for a C-section, as Dylan was breech. I had a spinal block put in, Tim beside me on the operation table with his hospital cap and mask on, holding my hand and looking into my eyes. The sheet was up so I couldn't see all the goop. The doctor had the scalpel in his hand and then put it down. "Lets do another quick positional check, wait a minute I just want the other doctor to check" Then I heard "well mum, appears your baby has done a U-turn while you were on the table, he is in the right position for natural child birth" Shocked, I was wheeled into recovery. The nurse told me that I would be taken up stairs for inducing in the birthing rooms. I still couldn't feel anything because of the spinal block. Then after 3 hours, all of a sudden I felt EVERYTHING! An hour after that, Dylan lay on my stomach...and pee'd on me! The next day I went home with baby Dyl. I remember Tim pulling up in our driveway and for the moment when he got out of the car to come around the otherside to open my door, I had this overwhelming feeling of "wow, I am sooo happy". Kids grow so fast, I feel like their childhood was a blink. I have two teenage son's now, Cain will be 17 next week. Now I get Cain coming in asking me to squeeze pimples and Dylan telling me he wants a girlfriend! Ah teenagers, what joy.<br /><br />Thank you to everyone for getting Dylan to where he is today. Without your prayers, support and fundraising, I know that he simply would not be here, which is so hard to ever imagine.</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-22480384168127902142011-10-30T23:21:00.001-04:002011-10-30T23:24:47.267-04:00Happy Halloween<!--[if gte mso 9]><xml> <o:officedocumentsettings> <o:allowpng/> </o:OfficeDocumentSettings> </xml><![endif]--><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:trackmoves/> <w:trackformatting/> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:donotpromoteqf/> <w:lidthemeother>EN-US</w:LidThemeOther> <w:lidthemeasian>X-NONE</w:LidThemeAsian> <w:lidthemecomplexscript>X-NONE</w:LidThemeComplexScript> <w:compatibility> 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mso-style-priority:99; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} </style> <![endif]--> <p style="font-family: verdana;" class="MsoNormal">All is well from the Hartung world. We had a fantastic time with my best friend and her daughter who stayed with us almost 7 weeks from <span class="yshortcuts">Australia</span>, slight hiccup of their travel plans with hurricane Irene but other than that all went well. I even rode a bike around <span class="yshortcuts">Manhattan</span> and over the <span class="yshortcuts">Brooklyn Bridge</span>, and I hadn’t ridden a bike for 15 years! Guess that proves you really do never forget. Dylan is still on Accutane as we wait for the humanized antibodies to increase dose in upcoming studies. He is doing well apart from the usual colds that come at this time of year and his usual fatigue and some aches and pains. He is still having home instruction as he realized that his fatigue issues would make full time schooling impossible. Cain saw his cardiologist and his dilated aorta is the same, no worse or better. He has been given activity restrictions but luckily his passion is music and not sport. We saw the human genetics doctor who says he is on the border for a diagnosis of Marfans. This diagnoses is not an easy one, it involves a series of puzzle pieces over time to get a true definitive answer. She has ordered blood tests that if positive will give us a Marfans diagnosis, however if it is negative it will continue to leave him on the border until another symptom arises. We just have to wait and see, but either way, Marfans or not, he still has a heart issue that needs monitoring. Cain says its fine, it could be so much worse and he is so right. I guess having a little brother with cancer puts medical issues in a huge perspective. Tim and I continue to work and we are at the stage of renewing our visas once again. Mountains of paperwork ahead of me, over the next month in preparation for the application. The boys have their birthdays very soon, it’s hard to believe that not only will Dylan officially be a teenager but also that Cain will be 17, he is almost a man! Dylan has his usual long wishlist on Amazon, he is fortunately still relatively easy to buy for, Cain on the other hand is grown, so birthday wants from him is just clothes and musical equipment. It makes it really hard because he can’t find many clothes on Amazon to put on his list (hard to choose without trying on) and musical equipment is so expensive. I suggested gift cards, but again not an easy thing to add to an Amazon list. A few of you have asked me what to get Cain and my suggestion is gift cards for clothes, shoes, music or movies…that’s my best I could come up with. Dylan of course is into his yu-gi-oh cards, nerf guns, ps3 games and even though it’s not on his list, he does still love hot wheel cars, he probably doesn’t want to admit it now that he is a “teen”. We had our first snow for the season yesterday, however it’s actually still fall. It’s the first snowfall in October since 2002. It wasn’t very pleasant though, nice to watch from the window, but being out in it was pretty horrible. I wore my sneakers to work, thinking t would just be flurries, needless to say on my way home I had very wet feet. It was windy and cold, and mixed with rain, so the snow was like a slushy. Today the sun was out, and dried up most of what was left. We had the “Angel on a leash” therapy dog Halloween parade at the RMDH, Bear wore his skeleton costume and had a great time. Photos can be seen on <a style="color: rgb(0, 0, 153);" href="http://www.facebook.com/profile.php?id=100000940867804"><span style="font-weight: bold;">“Bear’s” facebook</span></a> page. Speaking of photos, Dylan’s photo link should now forward you to his facebook page where I have uploaded many photos that were once accessible in his album. After 3 online galleries shutdown, I have now resorted to just using the<span style="color: rgb(0, 0, 153);"> <a href="http://www.facebook.com/dylan.hartung?sk=photos"><span style="font-weight: bold;">facebook gallery</span></a></span> for now. Well next update will be around the boys birthdays unless some drama happens between now and then. With Love & Hope, Have a fun and safe Halloween, the Hartungs.</p>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-3261766372211461672011-08-27T14:58:00.004-04:002011-08-27T15:47:30.141-04:00Hurricane Irene<span style="font-family:verdana;">Just a quick update, as we prepare to go through our first hurricane! As you know, hurricane Irene is headed straight for NYC. I spent yesterday amongst panic shoppers, trying to get supplies. The supermarket shelves were almost bare, all the water & bread gone. The lines were out the door! At the hardware the line was around the block and stores are bare of flashlights, batteries and candles. I managed to get candles at least and we have 3 flashlights and batteries. We are not so worried about damage in our location, however flooding and power loss is almost 100% guaranteed. We are in a flood zone where we live, but we are not in an evacuation zone. We are a block away from non flood risk areas at least. We will remain in our apartment, which is unfortunately at ground level, so we could be in trouble if the East river floods...the East river is at the end of our street. Tim has to work at the building that he works at, so it will be me and the kids, along with Bear and a foster dog we have, that will brave the hurricane and seek shelter away from the windows. We don't think the windows will blow out but there is risk of them being smashed by debris. There is a park opposite us with trees that may fall and construction directly opposite us with things that could potentially end up through our windows...if this happens then high wind and rain will come streaming in and ruin electrics and everything we own...this is my biggest fear. We already lost just about everything when we sold our home in Australia, and now we could loose it all over again, without money to replace things. I went to work this morning and in between seeing clients pets, we had to clean the back outdoor area in the rain, so that the drains hopefully have a better chance of saving the basement from flood. By the time I finished work, the public transport system had totally shut down and will remain shut down until after the hurricane has come through. The subways have a high chance of flooding and it may be a long period before it can run again. The power company is going to shut off the power if water leaks into the underground mains. I saw many things on my way home that will likely be a problem, such as all the garbage street cans are full,I guess sanitation has shut down too, this means the garbage will clog the drains, they are also not bolted down so they may hurl in the air into business windows. I also saw plants and chairs on balconies and window air-conditioners that are not secure. Water may be shut down too, this means no toilet to flush and no water for the dogs to drink. I managed to get 2 gallons but that's all we have. We will fill the bath tub and sinks up later tonight as back up and fill empty soda bottles. Irene has already killed many people in it's path, let's pray NYC is as prepared as they say they are. A lot of people are brushing off the warnings..."it's just media hype making it sound worse" " Ah it will just be a lot of rain and some wind, people are panicking for nothing" these comments worry me, because what if it's worse than these people think, are they prepared? With no power we have no elevators for the people who live 50+ floors up, atm's won't work, no internet, can't charge your cell phone, freezer and fridge issues for homes and businesses, the list goes on.
<br />
<br />The biggest disappointment is that my best friend Jenni and her daughter who I have not seen in 7 years just landed in LA and is stuck there because of course all the New York airports are closed. They are headed to a hotel as I make this update. Her airline only flies to JFK and that airport will be flooded for a long period. At this stage they are telling her that it will be a week before she can get to NY. The other airlines are selling tickets fast and the prices are insane. We were going to spend my birthday together for the first time in 7 years, but now it looks like she will miss it. I also took next week off work to spend with them but it will now be wasted :( I can't believe a hurricane is coming to NYC, it's such a rare occurrence! Poor Jenni, she never travels and I remember how scary it can be when your not familiar with traveling overseas, I can't believe this is happening!</span> <span style="font-family:verdana;">Wish us luck, hurricane Irene will be here very soon.</span>
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<br /><span style="font-family:verdana;">On a happy note, the humanized antibodies are here! MSKCC started the study this week and I believe 2 patients have started. I am waiting to hear from Dr Modak as to when Dylan can start. We know there are a lot of children who are not as fortunate as Dylan, who remains stable, therefore we are happy to stand back and not pressure the team to get Dylan started yet. My only concern is that the study doesn't close before he gets on, but I know in my heart that Dr Modak would not let that happen. Dylan has been first for a lot of studies, this time we will see the effects on the ones who started this week, be that side effects and disease response. The humanized antibodies sound very promising, I have never heard the team so excited about a new study. Here is a copy of what the head of the Neuroblastoma team at MSKCC had to say, from </span><a style="font-weight: bold; color: rgb(0, 0, 153); font-family: verdana;" href="http://www.mskcc.org/prg/prg/bios/203.cfm">Dr Cheung</a><span style=" ;font-family:verdana;color:black;" >
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<br />Dear BOP: </span> <p style="font-family: verdana;font-family:verdana;" id="yui_3_2_0_5_131447290837584" class="yiv1667211277MsoNormal" ><span id="yui_3_2_0_5_131447290837581" style="color:black;">As you have probably heard, we finally got the green light from the FDA.<span> </span>The first ever humanized form of antibody 3F8 is going to be given to neuroblastoma patients starting this week, having gone through all the hurdles, many unforeseen.<span> </span>I want to thank you all for this unprecedented grass root idea, your tireless effort and generosity, and above all, your faith in our ability to get this done.<span> </span>Our hu3F8 is one of the very few drugs specifically made for treating neuroblastoma patients in the history of medicine.<span> </span>We are proud of this enormous effort which will not be possible without your partnership.<span> </span>Words cannot describe the excitement of our clinical and research teams, and hope you will pray for its success, as we all do.<span> </span></span></p><span style="font-family: verdana;font-family:verdana;" > </span><p style="font-family: verdana;font-family:verdana;" class="yiv1667211277MsoNormal" ><span style="color:black;">Sincerely,</span></p><span style="font-family: verdana;font-family:verdana;" > </span><p style="font-family: verdana;font-family:verdana;" class="yiv1667211277MsoNormal" ><span style="color:black;">nkc</span></p>
<br />Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-75577123376478010612011-08-10T22:55:00.002-04:002011-08-10T23:07:17.432-04:00Finally an update!<!--[if gte mso 9]><xml> <o:officedocumentsettings> <o:allowpng/> </o:OfficeDocumentSettings> </xml><![endif]--><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:trackmoves/> <w:trackformatting/> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:donotpromoteqf/> <w:lidthemeother>EN-US</w:LidThemeOther> <w:lidthemeasian>X-NONE</w:LidThemeAsian> <w:lidthemecomplexscript>X-NONE</w:LidThemeComplexScript> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> 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mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} </style> <![endif]--> <p style="font-family: verdana;" face="verdana" class="MsoNormal">Yes here I am, sorry it’s been so long. I did have an update some months ago but left in draft, then my computer died, and Dylan’s died a week later. Thanks to very special angels in our lives, I now have a computer! It was a wonderful surprise, and one that I am so very grateful for. There are people in our lives who may not have known us all that long, but they are there for us as if we were family, you know who you are, thanks again for my computer! Cyber hugs and kisses! I then have been sick the last 5 days and my brain was just a fog, still kinda is as I am not completely well yet, but it’s back to work tomorrow regardless.</p> <p style="font-family: verdana;" class="MsoNormal">Dylan is doing great. He is currently on Accutane, 2 weeks on and 2 weeks off, as a tumor inhibitor, to hopefully keep Dylan stable until a new therapy is released. Dylan has side effects but in the list of limited choices at this stage in treatment, it’s the least inhibiting to his lifestyle and immune system. The main Pro is that his counts do not lower, the immediate obvious cons are dry skin, cracked lips and sensitivity to the sun. We are anxiously waiting for the humanized antibodies to be released as are the rest of the Neuroblastoma world. We may wait until the 2<sup>nd</sup> group of kids to try the study, just to see what to expect before we dive right in as we usually do. Our views on treatment are to maintain quality of life, and while Dylan remains stable, we should just take things more conservative now. Staying on Accutane is not our ideal situation, and hopefully it will only be for a few cycles. Currently Dylan is back in the dentist chair for a few months getting some major work done. His 2 front teeth were decayed and both need root canals. After that is done he needs 3 crowns, 2 front teeth and another on a back tooth. I am hoping that this work will give him more confidence and allow me to photograph him more often with a proper smile. Cain is doing wonderful. He just returned from music camp with a certificate of excellence and a scholarship for next year. He also has joined a band separate from the Ronald McDonald House and is over the moon with rehearsing with them and playing regular gigs. They even have a gig lined up at Webster Hall and a band manager!</p> <p style="font-family: verdana;" class="MsoNormal">Another reason that I delayed in an update was because I didn’t know what to say when our hearts broke on June 20th, the day <a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.caringbridge.org/visit/masonthomas">Mason Thomas</a> passed away. Kelley (Mason's mom) and I were very close friends for many years during the Ronald McDonald House years. We spent lots of time together, and Dylan and I would spend a lot of time with Mason too. I am impacted with every child’s passing, but there are some that you just got that little bit more attached to, and when they go, well it hits you like a ton of bricks to say the least. Dylan in his usual style, took the news well. He said he is in no more pain and cancer free. Then he ran off to play his playstation. Almost all of the friends Dylan has are now in heaven. Maybe this is the reason that he now refuses to befriend other cancer kids. I can't get him to socialize at the Ronald McDonald house much anymore at all. </p> <p style="font-family: verdana;" class="MsoNormal">We are preparing to try and send Dylan to Middle School next year. He has expressed his interest in going and being a “normal” kid, he also needs the socialization and friends. At the same time I am very fearful in sending him. Maybe I am being selfish and I need to stop wrapping him in cotton wool, it’s time to cut the cord but it scares me so much. I am so use to protecting him, from not only illness but of the world too in some way. We are trying to find a smaller size school and hopefully that will make it easier for me to accept. I am just worried that he will be teased for being so short, being knocked over in hallways and getting to and from school. I also worry about his exposure to viruses and diseases. He would get teased if I walked him to school, he refuses to allow me to arrange a school bus pick up and I worry about the traffic, he really has no road sense, he is off in his own little world and not paying attention. I could walk a block away from him and watch I guess. Anyway, that's not until September and we will cross that bridge as it comes, we all know too well how much things can change between now and then. In all honesty, Dylan is just existing, and I need to let him “live” by going out in the world and becoming a teenager…he will be 13 in November! He’s just so little, he still only wears size 8 clothes and has had the same shoe size for almost 3 years. I think people will wonder why such a young child is on his way to Middle school, unbeknown to them that he is much older. I was actually walking home from work one day, and Tim had let Dylan go to the deli to buy a snack on his own (no roads to cross). I was about a block from him and as a passed a couple of people, I heard them say “such a young boy sent to the store, that’s child abuse!” I couldn’t believe my ears, but then I realized that he does look so young, and they had no idea he was actually 12. I will keep you posted on how the school thing goes, we have to get his IEP re-evaluated and have aids in place to assist him, so it will be most likely well after school year starts anyway, <span style="mso-spacerun:yes"> </span>and I can’t start these processes until they open.</p> <p style="font-family: verdana;" class="MsoNormal">We are getting really excited in preparation for the arrival of my best friend Jenni and her daughter Kailah, who arrive in less than 3 weeks for a 7 week stay with us. I have not seen them since I left home in 2005, and I am so ecstatic. We will get to spend both our birthdays together for the first time in 7 years, and I can’t wait to see her daughter who has grown up to be a young lady now. Jenni watched Dylan be born, and I know that to see him in person again after all these years will be very emotional for all of us. Dylan’s cancer has not only affected us, but also the lives of many, and I know that Jenni is deeply changed by our journey. As friends we never really got to grieve together, in Australia it was a blur of hospitals and then fund raising to get him to America, so we never got to share our pain of this tremendous life change. 7 weeks is a drop in the ocean in time, but it’s long enough to share and catch up on so much we have missed together. We will be grateful for every moment we have, as we have no idea how long the next time we see each other will be. </p> Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-45538291260208391372011-05-30T08:12:00.005-04:002011-05-30T10:14:24.902-04:00The dark cloud of Neuroblastoma<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpFquHa1PQ_vCCxh8JeySb3VZI7G_-c3UE-Z5ibShTM5VLqQ009lUhUBXB75_qL7mZLEqcgMcgqTLsM6t-S6-5_uPeqNHrQyn8OuHEBeuuMhrk3IE-RQE6cIYUYQq-5G-C49gJtZlgwayp/s1600/IMG01133-20110215-1318.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpFquHa1PQ_vCCxh8JeySb3VZI7G_-c3UE-Z5ibShTM5VLqQ009lUhUBXB75_qL7mZLEqcgMcgqTLsM6t-S6-5_uPeqNHrQyn8OuHEBeuuMhrk3IE-RQE6cIYUYQq-5G-C49gJtZlgwayp/s320/IMG01133-20110215-1318.jpg" alt="" id="BLOGGER_PHOTO_ID_5612496834497317954" border="0" /></a><span style="font-family:verdana;">I came home the other day from work to find Dylan in the kitchen clutching a handful of hair and tears in his eyes. By the evening I found myself shaving what was left of his hair as my son transitioned back to the "sick" look of a child with cancer. A flood of emotion ran over me, it was more of a shock than I thought and I spent a period of time crying in private. Dylan is doing ok, but he is still neutropenic and Tim and I have told the doctors that we are ceasing the current study. In the light of knowing that Dylan did not truly progress as thought, putting him through treatment that is harming his immune system and physically changing him, the balance of life quality is high on our agenda. Dylan has also suffered from emotional changes and is having severe mood swings. He has told us that he does not want to continue this study and we respect his wishes. If he was progressing then our views and Dylan's would be different. Dylan is wise and knows that it is not a critical therapy, it's just another "let's see if this one works" rather than a "this one has to work now" kind of treatment.<br /><br />We have lost a lot of children, many of late, the passing of <a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.caringbridge.org/visit/francafamily">Nick Franca</a> and <a href="http://www.caringbridge.org/ga/jakemiller/"><span style="font-weight: bold; color: rgb(0, 0, 153);">Jake Miller</span></a> was very hard, especially for Cain who was very good friends with Jake. There have also been many children receive bad news and returned home for Hospice care. The hardest is yet to come for me personally.</span> <span style="font-family:verdana;">Mason Thomas is a child who I have known almost the entire time that we have been in New York. His mom Kelley and I have become very close friends, probably one of the closest friends I have made since coming to NYC. They live in Virginia but spent years with Mason in remission (NED) and having regular 3F8 antibodies. Kelley and I have a mountain of memories together, the good and the bad. Those who have followed Dylan's website would know that we joined Kelley's family reunion in the Catskills and Kelley's family made Dylan and I feel a part of their huge loving family while we were here on our own. Mason has now been given days to weeks to live, and Kelley is now facing the task of planning his funeral. I don't care how much hope you have as a parent, at some stage during the cancer diagnosis and treatment period you think of a funeral for your child. You push it aside and keep it moving, but for many, it becomes a nightmare reality. I love all of these children, for different reasons, some pass and they hit me hard, some give me peace because I could see their time here was complete, but then there are ones who I almost consider as one of my own, and Mason is one of them. I have snuggled up in a hospital bed with this child, stroking his head as he pushes through the nausea of chemo, held his "spew" bucket for him and held him down as Kelley had to give him injections of GCSF. I think too that each passing gets harder for more, my skin doesn't get tougher as some may think, a chunk of my heart goes with them, forever. I am in emotional turmoil of constant bouts of crying. Countless text messages to his mom Kelley, and a battle of emotions. My heart tells me to go to Virginia and run to Kelley's side, but my head tells me logically that I cannot emotionally deal with what's ahead, not face to face especially. The last time I saw Mason was at MSKCC, I went to visit him about a month or so ago, he was in his hospital bed with new red Nike sneakers. He was wearing them in the bed he loved them so much. Tim's last memory is when he stayed the night at our apartment a few months ago and Tim made him eggs and bacon for breakfast. Kelley was so happy that he actually ate, the chemo was kicking his appetite but Tim's breakfast did the trick that day! I don't want that to be our last memories, I want to see Mason again, I want him to hug me and say "hey Mel, what's up!" but at what cost to my mental health and my families anguish for my emotional state. I usually don't have the courage to read the websites of children I know are close to gaining their angel wings, I get half way through and close it down, flooded with tears. Not this time, I will read every last word and let the emotions in, I owe that to Kelley who is doing an amazing job, I am so proud of the mom she is and the love that her whole family have for one another, especially for Mason. Kelley's words at this time are important I will cry multiple times a day as I think of Mason, until he is called to heaven. If I could take away the pain from anyone it would be Kelley right now. I feel this so hard in my heart and Kelley must feel it a million times over. I cannot even imagine what more pain than this feels like. Kelley and Mason are fully supported by friends and family and more love than most I know, so that gives me some comfort that I cannot be there.</span> <span style="font-family:verdana;"><br /><br />It sounds selfish that I am saying how horrible this is for me, but what I am trying to relay is to somehow give everyone who read's Dylan's journal an insight of how having a child with cancer is. Putting it to words is almost impossible. It's not just "your" child. You meet so many along the way, especially if you spend multiple years in an institution like the Ronald McDonald House, it just gets harder, not easier. You bond with other cancer families more than you have ever bonded with people before. It's a bond that is with you for life, like your a member of a family you never knew you would be part of. You don't know the shoes until you have walked them, and for us pediatric cancer families we share that unique bond. Dylan is much more well than most with Neuroblastoma and I thank my blessings every second that this world turns, but deep down in a dark place in my heart, I know how close to the edge of the cliff we always are, even if it appears we have come so far...we really haven't, just a gust of unexpected wind could change everything forever. We are still in limbo, we have never been rid of the cancer in Dylan's body since he was diagnosed in 2004, and we do not know what lays ahead for his future, or ours. I never like admitting it but Dylan's chances of growing to adult years are very slim.</span><br /><br /><span style="font-family:verdana;">Please keep Mason's family in your prayers and let Kelley's words on Mason's website leave you with such a value of life and how precious your children truly are. Click </span><a style="font-weight: bold; color: rgb(0, 0, 153); font-family: verdana;" href="http://www.caringbridge.org/visit/masonthomas">HERE</a><span style="font-family:verdana;"> to see this remarkable family and wonderful kid Mason, affectionately known as "Nate". The whole thing sucks, it's not fair, it's just plain not right. I just wanna screeeeeeam!<br /><br />The photo above is the last photo of Dylan and Mason together at MSKCC about a month ago. God be with you Mason, we love you so much, be brave young man, your always in our hearts.</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-16892566162076057002011-05-17T21:48:00.006-04:002011-05-17T22:06:06.586-04:00Just a quick link<span style="font-family:verdana;">Four songs from Bad Habit...including "I will always be there" written by Cain for Dylan.<br /><br /><img style="visibility:hidden;width:0px;height:0px;" src="http://c.gigcount.com/wildfire/IMP/CXNID=2000002.0NXC/bT*xJmx*PTEzMDU2ODQxMjEwMTQmcHQ9MTMwNTY4NDEyNDAxOSZwPTE1ODM2MSZkPSZnPTEmbz*3ZjIyNzRhYjI*OTk*ZTVlOGQ1/OWFmMzRhYWIyYjBkYSZvZj*w.gif" width="0" border="0" height="0" /><div style="width:380px; height:170px; overflow:hidden; position:relative"><div><embed src="http://www.soundclick.com/widgets/creatives/mp3PlayerVIP.swf" flashvars="bandid=1174155&ext=1" name="MP3PlayerVIP" type="application/x-shockwave-flash" wmode="transparent" com="" go="" width="380" height="170"></embed></div><div style="width:150px; position:relative; top:-170px; height:170px; float:left"><a href="http://www.soundclick.com/bands/default.cfm?bandID=1174155"><img src="http://www.soundclick.com/images/navigation/blank1x1.gif" width="150" border="0" height="170" /></a></div><br /><div style="width:230px; position:relative; top:-28px; height:28px; float:left"><br /><a href="http://www.soundclick.com/bands/default.cfm?bandID=1174155"><img src="http://www.soundclick.com/images/navigation/blank1x1.gif" width="230" border="0" height="28" /></a></div></div></span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-57587679064505944262011-05-16T23:43:00.001-04:002011-05-17T00:54:19.928-04:00Belated entry<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Jgi3k3k_HARh0_2oDFN-mLWecV0a2nqvnZEEo9QprrkLlMVHUJZzZ7izQkWg4iv8Kijk96x4in56kL3qQPJjoX34KgCETnP0nAS7Qat2KB1o_GGDWeMeXD3MO4uX04EfXDK7T2sBJyn7/s1600/IMG_0665.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Jgi3k3k_HARh0_2oDFN-mLWecV0a2nqvnZEEo9QprrkLlMVHUJZzZ7izQkWg4iv8Kijk96x4in56kL3qQPJjoX34KgCETnP0nAS7Qat2KB1o_GGDWeMeXD3MO4uX04EfXDK7T2sBJyn7/s320/IMG_0665.jpg" alt="" id="BLOGGER_PHOTO_ID_5607541667879594786" border="0" /></a><span style="text-decoration: underline;"></span><span style="font-family:verdana;">It’s been a whirlwind of craziness lately. Time is just so hard to find, hospital, work, doctors, work…So finally I am doing an update that I should have done a few weeks ago. It’s been a challenge to say the least, with Tim and I on opposite work shifts, Dylan back and forth to hospital and trying to meet the needs of home instruction state testing. I have lots to say, first off let me say that in the past few hectic weeks we have had great loss and sadness as well as good times and joy. Typical of the pediatric cancer world really. Some days you just feel like you can’t go on, and other days make you fill with joy and happiness when the good times come along that you appreciate so much more. First off is the news of Dylan’s scans. Two days into Dylan’s new clinical study, we were told that his MIBG scan results were in and they gave us the printed report.</span><br /><span style="font-family:verdana;"> </span><p style="font-family: verdana;" class="MsoNormal">IMPRESSION:</p> <ol style="margin-top: 0in; font-family: verdana;" start="1" type="1"><li class="MsoNormal" style="mso-list:l0 level1 lfo1;tab-stops:list .5in">Nonvisualization of previously identified MIBG-avid foci in the skull and the left proximal humerus.</li><li class="MsoNormal" style="mso-list:l0 level1 lfo1;tab-stops:list .5in">2. Grossly-stable appearance of other MIBG-avid osseous metastases in the spine, bony pelvis and bilateral femurs.</li></ol> <p style="font-family: verdana;" class="MsoNormal"> </p> <p style="font-family: verdana;" class="MsoNormal">Whoooooaaaa! It disappeared by itself? The last reading was wrong? Everyone’s Prayers worked? I don’t really care how but it did…was it a mistake in the last scan? Who cares? It’s gone! Tim, Dylan and the doctors decided that since Dylan is already 2 days into the new clinical trial, that we may as well continue as long as the side effects are not too severe and see what the next scan says that’s due after this first cycle of new treatment. Who knows, it may just affect the stable disease that lingers in his spine, pelvis and legs. The first week involved 5 days of Vorinostat and 3 days of Etoposide (Chemo) and Dylan was very fatigued and slept a lot. Week 2 and no treatment (just blood draws twice a week) and his only side effects were some fatigue and a poor appetite. We are on week 3 and he is side effect free (on the outside) and no hair loss, but his platelets are down to 35 and his ANC (Neutrophils) are at 1. Most likely by the end of the week he will be neutropenic and need GCSF injections and probably a platelet transfusion. Week 4 is Vorinostat and more chemo…then 2 weeks off, then scan time. Next week will be the hardest to try and keep him well, I think that we will pull him off study after the scan, unless the results see a movement of decrease of disease.<br /></p> <p style="font-family: verdana;" class="MsoNormal">Next on the list of events to tell you that Dylan had a wonderful time in Florida and made a few video blogs of the trip, but no photos :( It was a rest he really needed, and he came home looking and feeling wonderful. He spent most of his time in the pool or at the beach with a banquet dinner at the Country Club for Easter. Cain performed at <a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.carnegiehall.org/">Carnegie Hall</a> once again with the NY Pops and even though Dylan was also supposed to perform, he was unable due to not feeling good after treatment. The Children from the Ronald McDonald House sang and danced with Maurice Hines and Cain played on Bass Guitar. All was lost for Dylan, he performed tonight at the Ronald McDonald House Annual Gala at the <a style="color: rgb(0, 0, 153);" href="http://www.waldorfnewyork.com/"><span style="font-weight: bold;">Waldorf Astoria</span></a>. Cain’s song that he wrote for Dylan called “I will always be there for you” was recorded a few weeks ago at the <a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.magicshopny.com/ms_home.html">Magic Shop</a>, a well known studio to the stars who include Bjork, Cyndi Lauper, Oasis, Lou Reed, The Rolling Stones and Sonic Youth just to name a few. This dream became a reality with the help of the <a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.newyorkpops.org/">New York Pops</a> and families of the Ronald McDonald House. The debut was tonight at the Gala and I am in the process of uploading the footage to Dylan’s <a href="http://www.youtube.com/user/dylanhartung?feature=mhee"><span style="font-weight: bold; color: rgb(0, 0, 153);">Youtube Channel</span></a>. Please excuse the moving video, it’s hard to cry and video at the same time! There are photos on <a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.facebook.com/dylan.hartung">Dylan’s Facebook</a> also. The song will also be available on iTunes soon with 70% of the proceeds going to the Ronald McDonald House of NYC. I have a suspicion that this song may even become the RMDH theme song! Sorry about Dylan’s photo link, they are closing down the website I use, so again I have to reload and create a new one. I also have lots of broken links and need to update the house Heroes page…I will work at it every chance I get…eventually.<br /></p> <p style="font-family: verdana;" class="MsoNormal">Bear officially became a therapy dog yesterday, passing his evaluation with flying colors! We are so proud of him. Now once we receive his ID badge in the mail, he can visit the kids at RMDH on a weekly basis and be included in all the “<a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.angelonaleash.org/">Angel on a Leash</a> events”. It feels great to be able to share him with others and especially with the kids from the house. </p> <p style="font-family: verdana;" class="MsoNormal">With great sadness and despair, <a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.caringbridge.org/visit/francafamily">Nick</a> and <a style="font-weight: bold; color: rgb(0, 0, 153);" href="http://www.caringbridge.org/ga/jakemiller/">Jake</a> both became angels. Both fought so hard for so long. I don’t know what to say, the loss of these 2 NB fighters has hit everyone hard. Many other children we know at the house have also received very bad news and are heading down the palliative care path. There’s a cloud hanging over all who are affiliated with MSKCC and RMDH this month in particular. At tonight’s Gala, many of the staff and parents just had that sad look in their eyes, hidden behind smiles and many broke down when the band played their song. It was all filled with words we in the cancer world can relate to so much, that the tears just flowed. All our love to the Franca and Miller family, your loss is with us all.</p>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-77163241243038165372011-04-21T17:22:00.012-04:002011-04-21T21:57:22.287-04:00Decision made for treatment plan<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrCbub7Hm6Yr_w7LG1SEt27ECC35tYEZW4bxixYkqgtjktkYzvnt77-mEgh4M4zOo4AovyMZ35rXx1CQxO2_p-UOYpMAzYTJrXBEf9pZ7EFxtBMsbWhledKCTIKEG37g5Y5d4vJeUiEl87/s1600/IMG_0584.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrCbub7Hm6Yr_w7LG1SEt27ECC35tYEZW4bxixYkqgtjktkYzvnt77-mEgh4M4zOo4AovyMZ35rXx1CQxO2_p-UOYpMAzYTJrXBEf9pZ7EFxtBMsbWhledKCTIKEG37g5Y5d4vJeUiEl87/s320/IMG_0584.jpg" alt="" id="BLOGGER_PHOTO_ID_5598217762186773634" border="0" /></a><span style="font-family:verdana;">After a lot of research and looking into options at CHOP in Philadelphia, we have made the difficult decision to go with the study offered at MSKCC that involves chemotherapy. It was a hard choice to make because we just didn't want to go down the chemo road again with only one bag of stem cells left and since we were unable to harvest anymore, it means that if they are used, then further options become even slimmer. The study is a Phase 1 protein targeted therapy with two drugs Vorinostat and Etoposide (chemo) otherwise known as VP-16. In a nutshell, the aim is that the Vorinostat opens up the cancer cell after approx a four hour window, then the chemo is given...the door shuts and it destroys the cancer cell. Once the cancer cell is dead, then the body will just absorb the cell after a period of time, and then spots in scans clear up. All studies sound great in theory, but they are just that...studies. We try and see if it works, hopefully one day one will and it will be the end of Neuroblastoma killing our kids. The drug Vorinostat is approved for the use in Adults with great results, lab results on mice show a great response in Neuroblastoma cells, so the study is to see if it works on children with different cancers, and Neuroblastoma is one of them. The doctor heading the trial hopes that the side effects will be minimal but Etoposide (chemo) is a drug that Dylan has had in the past at a larger dose, so we know that he is likely to suffer from nausea, vomiting, counts dropping and hair loss, but there is a small chance he might tolerate this smaller dose better. Vorinostat will be given as a capsule by mouth once a day for 4 days, then the chemo will be on day 3 for 2 days...I think...from memory of the discussion with the doctor. Then Dylan will get 3 weeks off and that completes 1 cycle. In the 3 weeks off, he will need several blood drawings to check different levels of not only the drugs, but also his counts. If he becomes neutropenic (no immune system) then he will be given GCSF injections to hopefully bring them back up again, if he gets a fever while neutropenic then he will of course be hospitalized until they come up. The good thing is that the chemo can be delivered by a peripheral line (regular catheter in the arm) which means he will not be at the usual risk of a line infection during neutropenia. Dylan's only concern...hair loss. Let's hope he falls into the category of kids who do not experience the side effects and he gets to keep his hair. Dylan will have scans next week as the pre-trial work up that is required, then treatment will start on the 2nd of May.</span> <span style="font-family:verdana;"><br /><br />The good news is that Dylan gets a mini vacation before he starts all this treatment, he has been kind of bummed out lately, so this will do him the world of good. Dylan leaves for Florida with a friend of ours for 4 nights. Our friend has family meeting up for Easter break and they have a wonderful condo by the beach with a pool and there will be lots of kids of various ages there to play with. Dylan is so excited, and can't wait to spend the next 4 days in the pool! Cain just got back from a school trip to New Orleans for 3 days, as part of his Service club work that he does each week feeding the homeless, doing community services etc. He had such a wonderful time and even got a steam boat ride along the Mississippi river! Tim and I were so pleased that each of the boys were able to have mini vacations, we are unable to afford a family vacation, nor get the time off work, so this was perfect, they both get to have some much needed fun and time to recoup...without us having to figure out how to afford it. Little miracles happen all the time, just when they are needed I guess. Not many people know but Cain is having concerns about his own health right now. It started with a routine check at the doctors for some health certificates to be filled out, one for school and one for The Ronald House to be a volunteer for the summer camp this year. We left the doctors office with 5 referrals to specialists! We are waiting to see a particular specialist at the end of May, so until then I am not going to go into detail, let's just say if he does have what they think he has, it has no cure (of course!) but he can continue to live a long life provided he takes the necessary life saving precautions and restricts his lifestyle. Yes, another blow and mountain of stress on our minds, lets pray that the doctors are wrong and the specialist tells us he is fine. I tell ya, I hate seeing doctors! I am due to go myself but have to get the kids medical stuff done first...to be honest, I don't really want to go because I am scared of what they might tell me! Coming up in May, the boys have the annual concert playing at Carnegie Hall and at the Ronald McDonald House Annual Gala at the Waldorf Astoria. Cain also has a recording studio date to record "his" own original music along with the New York Pops as his back up! Cain's passion for music grows further each and everyday and we thank the Ronald McDonald House and the New York Pops for their continued support for Cain to pursue his dreams. He is also scheduled for 4 weeks at the Summer Music Camp on a scholarship again this year. If your wondering why I have put a photo of Cain in Dylan's journal instead of Dylan, it's because Dylan refuses to let me take photos of him lately. Hopefully he will bring home some from Florida, I am sending him with a camera with the hope that he does.</span> <span style="font-family:verdana;"><br /><br />Please pray for one of my very special Neuroblastoma fighters, </span><a style="color: rgb(0, 0, 153); font-weight: bold; font-family: verdana;" href="http://www.caringbridge.org/visit/masonthomas">Mason</a><span style="font-family:verdana;">. He is about to embark on more treatment at MSKCC and he really needs this one to work. </span><a style="color: rgb(0, 0, 153); font-weight: bold; font-family: verdana;" href="http://www.caringbridge.org/visit/francafamily">Nick</a><span style="font-family:verdana;"> is also in need of serious prayers, Nick and his family are very well known in the Neuroblastoma world, I still remember way back when they first came to the Ronald House, Nick was much younger then. I am so glad that he has found love and she is right by his side, and pray they get to have more time together. I hate this horrible disease!!!</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-44728880648721853432011-04-01T19:45:00.003-04:002011-04-01T20:39:16.281-04:00In Limbo<span style="font-family:verdana;">Well Dylan is feeling ok, he had a cold amongst all the testing which made him feel miserable, but he appears on the mend now. He had a CT scan of his chest, hips and pelvis which came back as stable. He attempted the head MRI but was unable to handle it, so another was scheduled with an anesthesia, that came back as no brain involvement and the skull did not correlate with the MIBG spot seen. He also had Bone marrow aspirations, but the results are not back yet. We attempted a Stem Cell rescue with 5 days of high dose GCSF but the CD34 test came back showing no stem cells. That evening at 9pm we went to urgent care for an injection of a drug called <span style="color:#000099;"><a href="http://en.wikipedia.org/wiki/Plerixafor"><strong>Plertxafor</strong></a> <span style="color:#000000;">which is also a stem cell stimulating drug. The nurse told us the injection cost $8,000....wow! The next morning after another GCSF injection we went to hospital for another CD34 test, and waited for the results. Dylan was scheduled to have a central temporary line placed then down to the donor room for harvesting. We sat in clinic at after 4 hours the results came back as 0.00 so Dr Modak came to us with a sad look in his face and told us that there are no stem cells to harvest and he will discuss Dylan in the NB team meeting and get back to me with a plan. He said that he is not in panic mode yet and that he does not feel that there will be rapid progression. I got the impression that he really didn't know and that none of us will know until his next scan schedule in 4-6 weeks. I think the thing that confuses him is that Dylan's urine markers are in almost normal range VMA 8 HVA 10, this usually means that things are stable because the hormone found in the urine is produced by the cancer cell growth. <a href="http://www.nci.edu.eg/Journal/june%202003/Can.1.pdf"><strong><span style="color:#000099;">MIBG</span></strong></a> scans are very accurate for Neuroblastoma, more than other scans because the MIBG isotope piggy back the Neuroblastoma cells, hence lighting them up. I do know of MIBG scans not showing disease in some children, if anything an MIBG scan underestimates skeletal disease burden, according to this <a href="http://www.bioline.org.br/pdf?jp04088"><strong>article</strong></a>. I have never heard of them showing disease that's not really there and failed to find any articles revealing that. I'm relieved, anxious, scared and confused all at the same time. I guess time will tell. I believe that Dr modak has Perifosine in mind for the time being, but as Dylan has already been on this study in the past, it will involve more paperwork and possible compassionate grounds for him to get the drug again. I am waiting to hear from Dr Modak on what the plan is after the meeting. Dylan had mixed feeling, he was sad that the stem cells could not be harvested as he knows how important this safety net is for on-going treatment, but he was happy that he did not need to have a central line placed. For now we will continue to take each day as it comes, make the most of each one and not dwell on the maybe's until we know where this road is about to take us.</span></span></span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-75259743740946311072011-03-19T21:00:00.004-04:002011-03-21T23:39:12.826-04:00Dylan makes me smile<span style="font-family: verdana;">Saturday night after a full day at work, I was tired and feeling miserable. Dylan came in and said "mum you HAVE to watch this song, it's about me!" He turned his itouch in my direction and I watched the clip. I was puzzled at first as the lyrics didn't appear to pertain to Dylan but then when the chorus came on, I knew why he liked it so much. I thought I would share it with you all cause it made me smile...just ignore the lines in the versus LOL</span><br /><br /><br /><iframe src="http://www.youtube.com/embed/DkWQPGbU2pM?fs=1" allowfullscreen="" width="425" frameborder="0" height="344"></iframe>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.comtag:blogger.com,1999:blog-9148973863482208072.post-88014432434304097402011-03-18T16:21:00.003-04:002011-03-18T17:08:37.030-04:00Medical Update<span style="font-family:verdana;">Well, today I took the day off work because I kept tearing up and we had to go to the hospital. They tested Dylan's blood yesterday and this morning we got the news we can move forward with a stem cell harvest. Today we start GCSF injections at a high rate daily to boost his white blood cells for harvest. This will have the side effect of dropping his platelets significantly and will likely lead to platelet transfusions. It also means bruising and possible blood noses and any trauma to his head (eg: if he falls) then a CT scan will be necessary to ensure no bleeding. Having low platelets means your blood cannot clot and there is a bleeding risk. Another blow today was that I got a print out of the MIBG scan and it says that there is also a new spot in his arm...so that means one new in the skull and one new in the arm. I will copy part of the report below. His VMA urine markers say that it is lower than his previous tests 8, the HVA is not back yet. I am a little confused at this result as usually this marker raises when there is actively progressing disease. Anyway I am now scouring through all his records to try and interpret these Urine results better. Here is the MIBG scan Report:</span><br /><br /><span style="font-family:verdana;">Findings: MIBG-avid foci are again identified in the thoracolumbar spine, sacrum, pelvis and bilateral proximal femora. These foci are possibly minimally increased in extent/prominence since the prior study.</span><br /><br /><span style="font-family:verdana;">There is a new focus of MIBG uptake in the midline frontoparietal skull, suspicious for a new focus of disease. On correlation with the study of November 9, 2010, a focus in this location was present, suspicious for recurrence. There is a new, subtle, focus of MIBG uptake in the left proximal humerus.</span><br /><br /><span style="font-family:verdana;">IMPRESSION: Since January 14, 2011</span><br /><span style="font-family:verdana;">1. Recurrent MIBG-avid focus right frontoparietal skull.</span><br /><span style="font-family:verdana;">2. Stable to minimally increased osseous metastases involving the axial and appendicular skeleton.</span><br /><span style="font-family:verdana;">3. New subtle MIBG focus in the left proximal humerus. Correlate with additional x-ray imaging for confirmation.</span><br /><br /><br /><span style="font-family:verdana;">So the questionable spot in the skull seen in November last year has re-appeared and is confirmed as progression. January's scan did not show it. The Left arm is however new and this confirms my fears that we are definitely dealing with progression and yes, now it is hitting me like a ton of bricks. That sick sinking feeling in the pit of my stomach, unable to eat and shaking from the inside. I have slacked off on keeping his records up to date over the past year as things had stayed steady for so long. Now I am scrambling to get everything organized, fishing through piles of paper work to get everything in his medical diary so I can feel a bit more knowledgeable by reading through his records at a glance. The adrenaline is pumping so achieving this should be done by the end of the night. Thank you to all who have contacted me with prayers. It's just so hard for me because I have seen so many kids progress and pass, these images and memories have come flooding back, now it's our turn after all these years. What will happen? Will it stay stable again for years or will it progress at a rapid rate? That cloud over our heads has started to get darker, will it sprinkle or pour with rain?</span>Dylan Hartunghttp://www.blogger.com/profile/11190453475439694240noreply@blogger.com