Log in or Register to participate in these discussions

Waiting

Re: Waiting

Posted by WestCoastSailor on Oct 14, 2020 1:46 pm

AMother‍ 

So hard. Don't let anticipatory grief rob you of the time you have left. 

I had a daughter die and this thread brought those moments flooding back. Ask lots of questions. Balance time with quality. So much to handle. And be strong for your son on top of it all.

Sending loving energy to you.

Angus
My story: http://journey.anguspratt.ca

Re: Waiting

Posted by AMother on Oct 14, 2020 2:22 pm

Thanks, Lacey. He's going to Sick Kids at the moment. I've applied for contact with parents who have/had a child with the same diagnosis. 

Thank you Angus. Can I ask how old your daughter was? He's old enough to understand what's going on. It's hard to know which way forward with him. 

Emily

Re: Waiting

Posted by Wendy Tea on Oct 16, 2020 9:50 am

AMother‍  I am sad your family is facing such devastating news. It reminds us all to hold our loved ones close. No one can decide for you the right way forward for your family.  I believe that today is the most important day of my life. I make memories for when I am faced with a day that has overwhelming challenges and I need a reminder that joy exists. There is no wrong way to love and cherish your son. I think we all wish we were there with you. I think honesty is best, using simple terms and phrases. Discuss what today brings.  I found it easier than facing the diagnosis all at once. Do what you feel is right and natural.  And please look after yourself.  We are here to support you. ❤ 
Healing takes time and opportunity. Wendy Tea

Re: Waiting

Posted by Lacey_Moderator on Oct 16, 2020 10:40 am

AMother‍ 

Emily,

I think talking to others who have been there will be so helpful. You have us too ❤. 

A devastating diagnosis like this can really make us appreciate each moment together. The small things are big things. Thank you for reminding me of that.

Your boy is blessed to have you as him Mama. 

Lacey

Re: Waiting

Posted by Trillium on Oct 16, 2020 3:18 pm

AMother‍ - I hope you can connect with others who also have a child with cancer. My thoughts are with you and your family at this difficult time. We are all here for you!

Warm hugs
Judy
“Every day I wake up and decide today I’m going to love my life.” Carrie Hamilton

Re: Waiting

Posted by AMother on Oct 16, 2020 10:27 pm

Thanks for the messages.

I've been put in contact with another parent who has been through something similar.

He had a bad Thursday and last night. He wasn't better this morning, so I called his nurse. We were called in. By the time we had him back at Sick Kids he was doing better. I think he needs to take the pain killers he's prescribed and it will be easier to stay hydrated. We're keeping a close eye on him. Oncologist said we'd see them about surgery on Tuesday. I appreciate he was able to come home for the weekend. I just needed to make sure he was reasonably fit to be home. I don't mind taking on responsibility for him at home, I just needed to check he was generally well enough to be home. When we left for Sick Kids, my husband told him that the doctors don't want to hold him captive. If he's reasonably alright, they wouldn't admit him. The doctors proved my husband right for our son and that's good. I think he'll feel more confident telling us the truth about how he feels knowing the doctors are willing to let him go home if it's feasible. We're building his trust in the doctors and that's good because he hates doctors and hospitals. Getting him to stop seeing them as the bad guys helps. 

Re: Waiting

Posted by MCoaster on Oct 17, 2020 12:08 am

AMother‍   It is good that you and your family are now receiving the medical and personal support which was missing before.  The staff at Sick Kids are very caring and skilled and knowing that he is listened to and that they are worthy of his trust is a big step.   He obviously is a special boy and he is also a lucky one in having the parents he has. ❤️

About 40 years ago, when we were newly arrived in Canada, my young daughter had seizures which the local hospital could not find a cause for and I will never forget the 2 hour ambulance journey and what a relief it was to have her looked after by Sick Kids in Toronto.

Kind thoughts.

MCoaster

Re: Waiting

Posted by MCoaster on Oct 19, 2020 7:10 pm

AMother‍   Thinking of you on Tuesday.
                MCoaster

Re: Waiting

Posted by AMother on Oct 21, 2020 1:00 pm

It wasn't what we were hoping. The cancer spread too far for the surgeons to cut. We had a long discussion with a couple of the surgeons and don't want to go back into the disappointing conversation. The oncologist is asking us to try nivolumab for two months and see if it can help shrink the tumour and then we can have the surgeons look again. We'll see how that goes. 

So far he is taking it in stride. We're trying to stay optimistic. 

Re: Waiting

Posted by Brighty on Oct 21, 2020 1:58 pm

I'm so sorry AMother‍ .    I'm glad you still have another option .   I pray it helps shrink the tumor !!!!!
Help is out there. All you have to do is reach out.

Re: Waiting

Posted by MCoaster on Oct 21, 2020 2:42 pm

AMother‍    I am so sorry that the news was not more positive.    From reading through the posts of those where the tumour was inoperable chemo did shrink the tumour enough for future treatment.     Unfortunately the cancer teams at Sick Kids see all too many cancers so you and your son are in good hands.   It is my understanding that they also offer support to the whole family.    You mentioned that you had contact with another parent in a similar situation and I hope that is helpful.   It is very hard to do but as  WestCoastSailor‍, who spoke from experience, said treasure the present.    Often, and I know from my own experience, one of the few good things about serious illness in a family is that it can lead to an openness,  honesty and ability to truly know and trust each other.

We are here.

Warming hugs

MCoaster

Re: Waiting

Posted by AMother on Oct 21, 2020 6:14 pm

Thanks Brighty

Mcoaster - Chemo has a very poor track record with FLHCC. Nivolumab is an immunotherapy drug that has better odds in our case based on HCC patients. We've been warned not to get our hopes up and assured we'll try chemo if it doesn't work. I'm not sure why we're trying chemo if this doesn't work if evidence is that it hasn't especially benefited other FLHCC patients but I suppose it's better than telling us we'll do nothing if nivo doesn't work. 

My son cracked a joke about being a mayfly today and I had to go take a break. I don't even know if it was funny or not, the comparison gutted me. 

Re: Waiting

Posted by MCoaster on Oct 21, 2020 6:32 pm

AMother‍   I sincerely hope for good results with the Nivolumab.   You must be very unknown territory to you with all of the treatments?    
                    
                    Your son is be very perceptive and has a poets soul.

                    MCoaster

Re: Waiting

Posted by AMother on Oct 21, 2020 9:46 pm

Mcoaster - He hasn't started treatments yet. His first one is next week. As soon as we knew he had cancer, it seemed he had lymphoma and I went and learned as much as I could about it. There were so many treatments and options. It feels like a lot of doors have been shutting in our faces since we found out it was FLHCC.

The youngest relative I've known in all my life who had cancer was in her 70's. It's difficult to reconcile cancer being something happening to a kid when I've only seen it in people 40+ years older than me. 

Re: Waiting

Posted by Mammabear on Oct 22, 2020 10:35 am

I work with a pediatric oncology nurse and she said that children are stronger than we give them credit, it is the parents who are a mess. This will be your hardest work yet as a parent and I am sending all the strength vibes I can your way along with virtual hugs.

Re: Waiting

Posted by Whitelilies on Oct 22, 2020 4:01 pm

AMother‍ Hello and welcome to our caring site.....
Simply sending you and your family hugs.....you are NOT alone......
Please know that Hospital for Sick Kids is an amazing hospital, filled with specialists from around the world and experts in their chosen fields.....and all staff are compassionate.....
We are all here for you too.
Warmly,
Whitelilies

Lillian

Re: Waiting

Posted by WestCoastSailor on Oct 22, 2020 7:13 pm

AMother‍ 

Ah - the poignancy of children. That mayfly is an image I will carry with me for a long while.

Nivolumab is an interesting drug. I keep running across it in unexpected settings. I hope the treatment is successful.

As Mammabear‍ says now begins the work of being a parent. I can't imagine the challenge. Making your son's life what he needs it to be. Opening doors with him and walking through them...

Thinking of you.

Angus
My story: http://journey.anguspratt.ca

Re: Waiting

Posted by Lianne_Moderator on Oct 23, 2020 1:18 pm

AMother‍ 

Just stopping in to say I am thinking about you and your family. And I agree, it is so difficult to reconcile a child with cancer as we often think of it as a disease of aging.

Sending you a virtual hug 

Lianne

PS - if you want to reply directly to a member's post, as I have done here wtih your name, you can type the (@) sign Without the brackets, and then start typing their name. When you see the name you want in the drop down list, select it. It will turn blue and notify the member that you have responded. 

Re: Waiting

Posted by Wonder on Oct 24, 2020 11:16 pm

Any diagnosis leaves you in shock, but especially when someone so young has this fight ahead. Sending positive thoughts your way. 

Re: Waiting

Posted by AMother on Oct 25, 2020 8:02 am

Wonder‍ , if it was a fight, I think we'd have an easier time. There isn't a fight if we're being told he isn't going to make it. We thought we were talking 10-12 months but now most of the treatments we initially were told about have been taken off the table. His liver isn't strong enough to risk curative treatments and things intended to alleviate his symptoms are too risky too. How is this a fight? We don't have tools to fight with. It's being told it's over before we started. Each time we're told they're looking into another option, they come back with more no's. The medication is usually taken in combination and he can't handle the combination, just part of it. 

If we were at least being told there's a fight ahead, but it's not looking like a fight at all. 

Re: Waiting

Posted by Trillium on Oct 26, 2020 10:44 am

Oh no....  AMother‍  - This is just the most difficult thing a parent can go through. I’m so sorry there are limited options to help your beautiful son.

Warmest of thoughts and hugs for you today.😭❤️
“Every day I wake up and decide today I’m going to love my life.” Carrie Hamilton

Re: Waiting

Posted by Lacey_Moderator on Oct 26, 2020 10:51 am

AMother‍ 


Emily,

You are navigating something that feels impossible. I'm amazed by you. Just in case you need to hear it today you are doing a great job.

I have enjoyed learning more about your Son's personality in your posts. Keep knocking on doors and keep your door open for support. 

Hugs,
Lacey

Re: Waiting

Posted by MCoaster on Oct 26, 2020 11:51 am

AMother‍  
Emily.
   
Your news is heartbreaking.   There is nothing in life which can prepare a parent. Time is such a special commodity.

We are always here for you.

Caring thoughts.

MCoaster