Family Support vs. Knowing Your Doctors


(Daniel) #1

Hi all,

Last week our 4 month old girl was diagnosed with NB. After 10 fast and furious days (our worlds turning entirely upside down) we are facing some decisions we would love your input on. With regards to her disease, our daughter has two masses; right adrenal gland and right paravertebral column with some disease in the liver. She’s MYC non-amplified, clean bone marrow, and no chromosomal abnormalities and intermediate risk. Going in to find out MIBG results today.

I should preface by saying we are American nationals living in Ireland and have no family support in Ireland. We have a good friend community, but not the same as what we have back in the States. Upon diagnosis of NB our immediate knee-jerk reaction was to think “we need to go back to the States to be closer to family”. Over the last few weeks we’ve built good and trusting relationships with the doctors and medical staff in Ireland and are starting to question our initial decision to return back to the states. We have no established relationship with the doctors at the hospital near to where we have family (Children’s National Medical in Washington DC).

So here is our conundrum; on the one hand we can return back to the States where we will have strong family support, but do not know the doctors at all. Or on the other hand we can stay in Ireland where we have built a good relationship with the medical professionals but don’t have the family support. Both hospitals follow COG protocol.

There are obviously many other factors such as insurance, logistics around an international move etc that we’re having to explore, but our primary consideration at the moment is getting the absolute best care for our daughter while making sure that we set ourselves up for success throughout the treatment path that lies ahead of us.

Based on your experiences, how much did you rely on the support of family and friends throughout treatment? Was it critical? Y’alls input is much appreciated!

Thanks,

Dan


(Marta Enrile-Hamilton) #2

I think it is key to trust the consultants. If I remember well babies up till 18 months have a good prognosis -stage 4a?
My daughter is 6 and has been on treatment for 1.5 so far. Friends and family have been key but if your daughter is 4 months old she will benefit from love and play from anyone around you. I would advise you to accept any help friends and family can offer but not to change your lives/ job too much so as to use all your energy to be with your baby. Do you have other children? I would take into account the impact of taking him away from his everyday life.
If your relatives will make you feel more worried I suggest you write a blog to keep everyone up to date without having to answer the same questions over and over instead of resting.
I believe treatment in the US is very costly. A top place for NB in the US is Memorial Sloan Kettering Hospital in NY: https://www.mskcc.org/?gclid=CjwKCAjw4uXaBRAcEiwAuAUz8ME_AAlrmJ93a1wrhCqH6adR4al4Fa35PfhcMaHpf4_2oEVfluiyPRoCwYcQAvD_BwE


(Alex Chen) #3

Hi Daniel,
I am also a father of Neuroblastoma kid. here is my understanding based on your case.

Based on your kids age and symptom, it looks like Neuroblastoma stage 4S. Stage 4S have a higher cure rate based on the statistics (80-95%). As baby now only need breast feed or milk powder. you wife along should be OK to handle the kids in hospital. you can still doing your job and go to hospital after work, to give your wife a break of couple hour to relax herself.

for treatment plan, both hospitals are using COG protocol, However, the same recipes may come out differently in different chief’s hand. so ask your hospital how many similar case in the past 5-10 years and what’s the cure rate is important. you can also refer to US hospital such as Sloan (mentioned above), Boston Children Hospital, LA Children hospital and others. They may have more experience on Neuroblastoma patients. then you can choose the hospital that you have more confident on it.

I hope you kids medical expense will be covered by insurance. So stay in Ireland your wife need to stop working for 6-12month. Going back to US, maybe both of your need to stop working for 6-12 month. so need to figure out how to cover your living and medical expense during the treatment period.

Neuroblastoma is a brand new word to most of the parents, so it is very important to do some research on it. you can refer to this forum or http://www.cncfhope.org/Home, there are a lot of useful information for your.

hope that can give your some idea on the future treatment, Wish you kid recover soon!

Alex Chen


(Sam Saffron) #4

First, I am very sorry about this happening, I dread to think back to my first 2 weeks post diagnosis. The good news though is that you are likely in a very favorable group. Sounds to me like stage 2 and the prognosis there is really good, there are huge advantages to being really young here.

In some cases I know they watch and see vs treat for 4 month old, there are cases where NB just vanishes for super young kids.

As to your conundrum, it is very hard for me to give advice until I know the treatment plan, it really depends.

For us, the family support helped us enormously through treatment, but the treatment for stage 3 MYC amplified 18 months+ is incredibly aggressive and involves enormous amounts of hospital stays. We also have a daughter who was 6 at the time and having family to help out with her was incredibly helpful.

That all said, I would have given up all the family support and winged it all if I knew of any better options at the time and could afford them.

You will notice that MSK gets mentioned quite a lot here, and the big reason is that they are in a unique situation where they have access to quite a few drugs that other hospital’s in the world have no access to.

My advice would be to get a good picture of the recommended treatment plan first and decide on the next steps after. Once you have the COG treatment plan shoot off an email to MSK to ask what they would recommend.

If you are a US citizen and NY resident it is not that costly at all to be treated at MSK, at the bottom range of the income you would be covered by medicare and if you have high earning powers you would be covered by the insurance your employer provides. Coverage is quite complete and you would not be out-of-pocket, clearly insurance is complicated and you would want to talk to a navigator explaining your situation and so on, but it is very workable for citizens/residents. NY have laws that make it way better for children that many other states.


(Donna Ludwinski) #5

Dear Dan,

This is indeed a terrible shock for any family – and so very sorry you are dealing with this.

Do you know why she is classified as intermediate risk, instead of low risk? Did you get results of the MIBG yet? Did they biopsy her primary tumor? Is it diploid? How is she doing now – any compromise with organ function?

I am in the US (our son was treated at 5 US hospitals) but have some good friends who have had children with high risk NB in Belfast and Dublin. Message me if you would like to be connected with them. One is a US family.

Sending you hope and strength and very best wishes for your daughter.


(Daniel) #6

Thank you everyone for your messages! These have been extremely helpful. Our daughter is intermediate risk because she has two tumors (right adrenal gland and right paravertebral column) as well as disease in the liver. The doctors feel that the second tumor precludes her from being 4S and therefore puts her into the intermediate risk category. We did get the MIBG scan results and there are also signs of the disease in her right femur, left pelvis, and in her cranium but the levels were low enough that the doctors feel it should be manageable.

@ludwinski I appreciate your offer to put us in touch with the families in Dublin. Ultimately we are going to come back to the states to be closer to family and community support. We can always come back once treatment is completed.

@sam I have noticed that SKM get’s mentioned quite a bit and we’ve been in touch with one of the primary physicians, Dr. Modak to confirm the diagnostic. We’ll be meeting doctors at Children’s Memorial next week and hope to be able to confirm treatment plan with Dr. Modak as well.

Again really appreciate everyone’s input and kind comments. It’s been extremely helpful as we navigate next steps.