What advice would you give to newly diagnosed?


(Sam Saffron) #1

The first few weeks of diagnosis were the hardest for me, we entered a new system, our old normal life disappeared.

For people who were just diagnosed, what tips, tricks and bits of advice would you give?


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(Sam Saffron) #2

I will start, we were diagnosed 4 months ago, advice I would give my past self:

  • Eat, take care of yourself, take care of your spouse. Taking care of a sick kid is a full time job, you can not afford to get sick or be run down. Proper sleep, food and exercise are even more important in this time. Even a 15 minute jog once a week is useful.

  • There is a lot of waiting, prepare for it.

    • It is very likely you will be spending days in isolation rooms during your treatment, music is a huge helper, buy a portable speaker, have the music running when you are isolated.
  • A lot of parenting that applies to normal parents no longer applies to you. Buy your kid an iPad, fill it with games and movies.

  • Hospitals often have a 1 parent a night policy, this is a very good policy, it is not sustainable for 2 parents to be present 24 hours a day.

  • Most of the time your 3 year old will simply be a 3 year old. Diagnosis does not mean your kid will stop running around and be bed ridden from now on. Most of the time pain is very limited, and kids are still active and learning.

  • The stories about chemo from the movies are usually outdated. Anti nausea medication these days heavily limits the scope of nausea. Chemo is not easy, but its not 3 months of vomiting.

  • Learn to give GCSF injections early on, it gives you more freedom to go home and allows you to better control the pain, we found the emla patches just caused more distress for minimal help.

  • Try to make the best of the situation, you will build a much stronger relationship with your kid / spouse during this time.


(Kyle Matthews) #3

Hey Sam, great question. Here’s some of the lessons I learned:

  • Ask questions. You are your kid’s best advocate, and understanding what’s going on and why is important. Ask anytime you don’t understand anything (which will be a lot!). You’ll start to learn more, and even catch some things which maybe need to be adjusted.
  • Keep a clear, up to date, and readily available treatment history. There are apps now for this, or a Google Doc works (nice because it’s accessible from any connected device), or a good old fashioned notebook. There are many times you’ll be asked what meds your kid is on, or when such and such procedure happened, etc. Write them down. This is also useful if you move treating institutions.
  • Second opinions are wise. You’ll find standard of care is pretty set for neuroblastoma, but after treatment and if there is any relapse, opinions start to differ. Find a couple neuroblastoma experts, and just keep them aware of your kid’s treatment (major updates is all you need to do there). That way, if there are any issues, you’ve got multiple people able to provide options.
  • Take the help you’re offered. I don’t mean financially (although that’s ok, too) - but everything. Emotionally and physically, this is one of the hardest things your family will tackle. If you’ve got amazing people around you offering help, take it whenever it makes sense. Your focus should be on your kid, and your spouse.
  • Know your options. We were surprised when Ezra relapsed how few of the options our treating oncologists was aware of. We were told “pick a trial.” It’s a little better now, but you should be aware (at least from a distance) of the trial and treatment schools of thought and options. Again - standard of care is fairly set currently (although that’s also being refined), but if anything goes awry during treatment, you want to be in the know on what options are out there.

That’s not everything, but it’s a great start.


(Rochelle Paterson) #4

Couldn’t agree more with both of you. So true about movies and nausea, Sam. We were expecting much worse, but even on Cisplatin the anti-nausea meds worked well for Rea. I swear by Emend and Zofran. Kyle, I am with you on researching and knowing your options. We were never offered DFMO, nor was there ever mention of it at our hospital. Rea was to complete her 6 months of immunotherapy and just be done with treatment after her last ch14.18 infusion. I had read about DFMO for remission maintenance and asked if we could get Rea on it, even if we had to travel to another center. Luckily, Dr. Hale was receptive to the idea of opening the study at ACH for Rea and other children to follow. Shortly after our discussion, I was watching the news in Rea’s hospital room and I listened to you talk about Ezra’s story. Because of Ezra’s support of the DFMO trial was mentioned, further validating our decision, so thank you. <3


(Kyle Matthews) #5

And that is why we just keep sharing all our stories!


(Sophie Grow) #6

Advice I wish I’d known:
-never too early to get a counselor. After the fact is very late for learning to cope. I still visit my counselor. Going on 3 years weekly without missing a date.
-share your story. It’ll become a burden if you keep it and fear pity. People don’t know how to talk about cancer. So… talk about it and learn to share it often.
-my sister and her son moved in with us. The help and company kept me from going off the deep end. We had plenty of alone time too. And though the house was snug, the help was worth it. Like meals and playing with a pretty germ free kiddo. Kept me from total isolation.
-give yourself the same treatment as your kid. Sleep sleep sleep. Nap. Eat healthy.
-The Internet is a scary place. Do only what is necessary and stick to light hearted things.
-be an advocate. Question everything and make calculated decisions. And know you CAN do this.
-I second the truths that there is a lot of hurry up and wait. And that children will still play. Treasure it. Being present is essential and draining.

I gained a lot of weight from the stress. Once I started Zumba classes I lost weight and felt better. Slept better too. We are NED and living a "normal"life. Never thought it possible but it is.


(Karin Ström) #7

Start giving your child vitamin c and d. After we started 2 months into treatment it really helped her immune system. And we halfed the time we spent in the hospital with infections and fevers.
If you are in for the long run try to get a cataporter and not a central line. You get so much more liberty and fewer risks.
Seek a second opinion and advice. We wish we would have as we’d might been able to avoid one of the more toxic treatments.
No tumour is inoperable before it’s been said so by the specialists at Sloan Kettering.
Get informed, you need to drive and be the advocate to get on trials and correct treatments.
Give yourself a hug and cry if needed, it’s the toughest battle anyone can be in.


(Kyle Matthews) #8

Love this. Thanks @Sophie_Grow.


(Sam Saffron) #9

I never heard of a cataporter, what is it? (keep in mind I am from Australia so maybe its just something they don’t use here) we use a central line, it is annoying you can not have proper showers or baths, really miss that.


(Karin Ström) #10

Hi Sam,
Sorry to hear about your lil’one’s diagnosis.
Thank you for raising the question also, I think it is officially called
port-a-cath. If your little one will be going for a long time treatment it
can be worth asking to have this put in instead. One can go swimming with
it and there are no dangling parts to worry about…
Good luck now and keep up up to date on how you all are getting on.
Kind regards, Karin


(Sam Saffron) #11

Wow, never heard of this, thanks for sharing!

From what I can tell it is single lumen? Did you find that to be a problem?


(angela ferrick) #12

I would have to agree with the take help when offered. We live in a small community, so everyone knows Jake. The love and support from our community is what sustained us. Rely on your friends to remind you that you are you, not just a Mom of sick child. I have a great support system.


(Jessica Guess) #13

We are still in a daze from the diagnosis. It has been almost 5 months and I still can’t wrap my head around all of it. We were handed a road map treatment plan and it spells out everything. I could read it 100 times and still can’t focus. I just focus on 1 step and 1 day at a time. I have not done a lot of research yet but I will now! I have never heard of DFMO. What is that


(Jessica Guess) #14

I wish I would’ve known about that. I just go with the standard treatment and they said central line because of his age. It is a double lumen and hangs almost to his knees


(Sam Saffron) #15

This is SO normal. Sometimes everything just feels to me like one long and endless day. A lot of time the Oncologists, rightly so, don’t give you the full lowdown on the next part of your treatment till you are just about to take it.


(Heather Vincent) #16

I apologize in advance, as I am about to write a book here, but my never even having known someone close to me with cancer prior to my now 3 year old’s diagnosis last fall, I didn’t have anyone to tell me any of the following & a heads up is sometimes a wonderful thing & something I would have loved to have myself!

  • Don’t worry about offending other people when you are making a decision that’s in your child’s best interest. People will judge, criticize, they will be offended, they will pretend they know what you’re going through in order to support their own criticisms. However, only YOU know what’s best for your child & you should NEVER allow someone to make you feel bad or second guess your choices. You will lose friends who you thought were some of your best friends. But you will also make new friends. People will stop calling after the newness of the diagnosis wears off. Those who are true friends may not understand your reasoning behind your decisions, however they will accept your decisions with no questions asked, no judgment passed, & they will be the ones still checking on you guys 5 or 6+ months down the road.

  • Do not be afraid to tell people “no” or to put a “no visitors” policy in place. We are almost 6 months into Stage IV High Risk & have had exactly 1 hospital stay due to fever. We have had zero setbacks in treatment b/c of that. I was ALWAYS the one worried prior to diagnosis about offending someone if I had to tell them no, often resulting in allowing myself to go against my better judgment, all b/c I didn’t want to hurt someone’s fellings or upset them. For my son’s sake, who I mentioned is 3 now & was just 2 1/2 at time of diagnosis, I had to step up to become his voice for him. I will tell people, “No, you cannot stop by.” “No, I cannot let you in my house today b/c my son’s ANC is too low…even though you showed up with gifts for him.” “No, he can’t have visitors at the hospital today b/c he was throwing up all night & visitors can sometimes be overwhelming & exhausting (for both him & I).” “No, we can’t come for holiday dinner b/c you have 12 people at your house that day & that’s 12 different people who could expose him to something.” While I am not encouraging rudeness at all, again, those who also want the best for your child like you do will understand. Not every cancer parent will agree with this, which is absolutely ok, but I had to learn to say “no” & it’s the best choice I made b/c ultimately it protects my son & it’s what works for us.

  • Do not, do not, do not allow a diagnosis to undue all the parenting you have done up to this point. When your child beats cancer, you want the same child you had before diagnosis, although no child will ever come out of treatment the same child they were at the beginning, you don’t want to lose everything you instilled in them up to that point & allow them to get away with everything simply b/c they are sick. Stick to your same old routines & rules as much as possible I am very strict with my 3 year old still, enforcing manners, proper behaviors, respect, & following the rules. Sure I cut him more slack than I did prior to his diagnosis b/c sometimes he is just flat out tired & he needs me to just hug him when he begins to cry after being told to pick up his toys or being told no instead of just telling him to go sit in time out until he can listen. Even toddlers have emotional days & need us to stop & assess why they might be feeling a certain way & sometimes a hug or cuddle is all they really need. However, they also will still test you in normal toddler behavior ways, & those are the times to continue to parent in the same ways you had previously. If a scale is rolled into my son’s room & he decides he doesn’t want to get on it, nurses & even his dad will decide will try to negotiate with him. I simply walk up, pick him up off the bed, set him down in front of the scale & tell him it’s time to get weighed & I know he doesn’t want to, but he has to, & that he can go back in his bed in a minute when they get his weight. Even children with cancer need structure.

  • Make a game out of everything you possibly can. My son hates having to wear his mask when being accessed or deaccessed, so I started making a game out of it where we have to guess what silly face the other one is making behind the mask. I also bought him a custom Minion mask off Etsy for about $8.00 that he will wear with no problem b/c that’s HIS mask. We also play “Good news/Bad news” a lot. When he doesn’t want to do something or I am about to tell him something he doesn’t want to hear, I will say, “I have some good news & I have some bad news. The bad news is you have to take your oral medicine tonight. The good news is once you take it, we can watch a kid’s show before we turn off the light.” Padding the bad with the good helps him focus on the good in order to get past the bad.

  • Explain things to them on their level. If I told my 3 year old he was going to lay on a big machine for an x-ray or MRI, he would have no clue what I was talking about, possibly leading to fear or anxiety of the unknown. Instead I tell him, “Today the dr’s are going to use their x-ray vision to look at your belly. Their x-ray vision only works when you lay on their special table though so we have to go to where it is & you need to hold very still for them.” Everything is new to them as it is to us parents, but unfortunately while we (sometimes) understand what is going to happen, the younger ones don’t & that can lead to anxiety & fear of nothing more than the unknown, & not just the test or scan itself.

  • You will learn your child’s “puke face” & become a ninja who can catch it in a basin better than some MLB catcher’s can catch a ball.

  • There is something called “chemo poop” that will leave your nose burning & you will be wondering how your small child was able to accomplish such an odor from their tiny body. I recommend putting a trashcan right outside your nearest door if your child is still in diapers to catch & release as quickly as possible to contain this unique smell without further spread of it through your house.

  • You will find out that you have strength that you didn’t know you had & that you didn’t know existed. You will be strong for your child, b/c NOT being strong is NOT an option.

I am so sorry to hear your child & your family all have to go through what can sometimes only be described as “a living hell”. However, even on the darkest days, always find something to be grateful for…even if it’s just that your feet hit the floor that morning b/c if you let the negatives reign, this can take over you & can be completely overwhelming. And it’s ok to have a really big, really ugly cry whenever you need to, but always remember to pick yourself back up after, wipe your tears, & remember, God only gives these situations to people He knows can handle them. He has faith in you, so have faith in yourself!


(Kyle Matthews) #17

So well put, and brilliant advice. Thanks @Jacoby16!


(Elisabeth Bernau) #18

Also as silly and stupid as it sounds…get yourself an electric blankets for those nights in the hospital you can’t (or in our case when our baby won’t let us) sleep with your little…it’s freezing in there and you need as much sleep as you can get!


(Sam Saffron) #19

Hi Frank ( @2525)

I noticed you posted a wonderful write up about advice for the newly diagnosed on the SKC newsletter. Was wondering if you can share a link here to it?


(frank kalman) #20

HI Sam,

Can you tell me where you want me to share a link to? Also what is SKC?

Thanks

Frank

Frank Kalman, Executive Director

End Kids Cancer

805-550-7682

Email: Frank@EndKidsCancer.org frank@endkidscancer.org

Web: www.EndKidsCancer.org http://www.endkidscancer.org/