What advice would you give to newly diagnosed?

Love this. Thanks @Sophie_Grow.

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.

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

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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?

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.

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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

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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

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.

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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!

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

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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!

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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?

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/

Just here, it would be awesome. SKC stands for solving kids cancer.

One last question - what was the article about?

Thanks

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/

Sam - we’re going to pass. There were times I left your boss messages and
he wouldn’t return my phone call. I’ve left messages for Donna and she
hasn’t returned my phone calls.

We are going to pass.

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/

Sorry … I meant the “End Kids Cancer” newsletter I just got 3 days ago that you wrote:

It contained the text:

Executive director of End Kids Cancer offers advice for facing a cancer diagnosis based on personal experiences.

In particular you gave the advice of “trust but verify”.

I thought the entire text was very thoughtful and wanted to share a copy on this forum.

That is a good place to put Sam. Thanks for posting it to the NB Forum.

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/

This one?

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I tell people to get a notebook or journal and write down as much as you can. This helps you make sense of all the info you’re being bombarded with and later on will help you advocate for your child.