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Waiting

Waiting

Posted by AMother on Oct 8, 2020 8:17 pm

Today my son turned 12 and he had a liver biopsy via a small incision. We've been in hospital since Saturday and if his blood test is good, we can take him home tomorrow. I might find out tomorrow, Tuesday or it could be inconclusive. I've been trying to get him appropriate care for a year and he looks a frail mess and we're now being taken seriously but I still have to wait around before we can start making him better. We're not actually doing anything for him yet. We're still trying to figure out what he has, probably cancer, but what kind? He's not part of any groups that typically have the issues he's having. I'm glad we're not being told it's psychiatric anymore but I want to see him start getting better already. I feel like I've been fighting this for a year now and I'm being told it's marathon not a race, like this has just started. Like this past year didn't even happen. 

Re: Waiting

Posted by ashcon on Oct 9, 2020 12:41 pm

AMother
Wow. Your username says it all. And the subtext of the history you share of how your son got to this point alludes to a year of spinning wheels. 
What is the news today? Are you able to take your son home today? 
My heart is with you and your family as you head into this Thanksgiving weekend.  I sincerely hope that the thanks you are able to experience involve finding out what is going on with him. 

Wendy Tea suggested one resource. There is this other one specifically about when it is your child that has cancer. 
https://www.cancer.ca/en/support-and-services/support-services/when-your-child-has-cancer/?region=on

Don't hesitate to also call the Cancer Information Helpline at 1-888-939-3333.

Please let us know how things go over the next few days. 
---- "Nothing ever becomes real till it is experienced." ----

Re: Waiting

Posted by Trillium on Oct 9, 2020 3:56 pm

AMother‍ I feel for you and your frustration. I so hope that it is not cancer but this is a great place for support and information. I believe there is a group for parents of children on this forum. 

Hugs
Judy

 

Re: Waiting

Posted by AMother on Oct 10, 2020 5:18 pm

Thank you Ashcon and Judy,

He did get to come home late yesterday. We will find out next week if all goes well. The way the doctors talk, we're discussing what type of cancer he has, not 'if' he has cancer. But I'd like hang onto hope they're wrong. There's 3 likely types of cancer with survival rates changing between them from 80% to 20-30%. I never thought I'd be hoping for a cancer with an 80% survival rate. At the moment, that would be good news. 

It's still nice to have him home. He has been getting real sleep. He spends a lot of sleeping but at least I know why now. Our goal is to gain some weight back before treatment starts. Unlikely, but it can't hurt to try. 

I'll take a look at the link, thank you. 

Re: Waiting

Posted by MCoaster on Oct 10, 2020 6:46 pm

AMother‍   It so worrying when a child is ill but it is even more so when a parent knows there is a problem but nobody listens.  It is good that you have him home now  though, knowing that you are on the way to having a diagnosis.  I sincerely hope your worst fears are not realized.   It is easier said than done but it is better at this stage to live in the moment and not speculate about the future but to treasure the present.  

If there is a problem with his liver perhaps your doctor or a dietician may have suggestions of foods to tempt him with?

As one mother to another I wish you and your family a warm and loving Thanksgiving.

MCoaster 

 

Re: Waiting

Posted by cancertakesflight on Oct 10, 2020 11:03 pm

AMother‍ Even though I know what it is like to have cancer, I've always thought that sometimes it's worse to be the caregiver. As a patient you feel like you are doing something to rid your body of cancer. As a caregiver, I can only imagine that the feeling of helplessness can feel overwhelming. When you are the parent to a sick child, strength of those feelings is even stronger.  

You seem like a very strong woman...a strong mother. I know that you will do everything in your power to make sure your child gets the best care possible. 

My thoughts are with you. Thank you for taking the extra step to reach out to us for support. It's just one more sign of how much you love and care for your child. 

If you are willing, please keep us posted. We care. You are not alone.

cancertakesflight
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Waiting

Posted by AMother on Oct 10, 2020 11:56 pm

Thank you, the hospital did have dietician's speaking to me. They put emphasis on calories and protein, plus try to pack other nutrients in with them. Poor guy is enthusiastic about food, but fills up after two bites. We're trying to feed him frequently in small amounts and avoid large meals. 

It's a little easier dealing with it if I try to stick with the facts and work from there. The facts, what we actually know, simplifies the situation a little. 

Re: Waiting

Posted by Trillium on Oct 11, 2020 8:47 am

AMother  I could not find a group here for parents of children but this organization below does have an online group for parents and children together. You will need to sign up To see the group listings and they are starting new groups soon so you might want to check it out sooner than later.
https://cancerchat.desouzainstitute.com/

Wishing you a peaceful Thanksgiving 
Judy

Re: Waiting

Posted by Trillium on Oct 11, 2020 10:37 am

AMother‍ - here is another site from the above site but as I read more through it looks like it is for children who have a parent living with cancer. There may be resources that are more applicable to your family there or they may be able to point you to other resources.
http://www.cancerinmyfamily.ca/parent-about-the-site.aspx

Im sorry, Amother but when I went to find the group I saw within the Desouza Institute on their calendar is no longer listed. As soon as they have groups filled they are no longer posted. You can email them to ask if they do run groups for children with cancer just to be sure I got that correct. I did find this Canadian site for children who have cancer who also may be able to point you to resources.
https://www.kidswithcancer.ca/for-families/

Re: Waiting

Posted by AMother on Oct 12, 2020 12:01 am

Thanks for the help. 

We don't have a specific diagnosis and sites require a specific diagnosis before you can sign up. I know it won't be long until we find out but days can feel like years right now. Until then, I'm just in limbo. 

Re: Waiting

Posted by Wonder on Oct 12, 2020 6:33 am

Thinking of you and your family. I hope you have a good support network in place. It’s difficult when you have to wait and advocate so long/hard. ❤️ 

Re: Waiting

Posted by Trillium on Oct 12, 2020 6:30 pm

AMother‍ - waiting is so hard! According to this link below from the New Zealand Cancer Society on waiting, there are two coping strategies; focusing on the problem or focusing on other things. I focused on other things which worked well for my coping. It’s a good read. (You May need to select a region to continue reading. Just choose anything)
https://wellington.cancernz.org.nz/cancer-information/living-with-cancer/coping-with-waiting/

Hugs for you during this very difficult time.

Re: Waiting

Posted by AMother on Oct 12, 2020 9:46 pm

Got voicemail for appointment tomorrow morning, looks like they might know something. We'll see how it goes. Thanks!

Re: Waiting

Posted by Wendy Tea on Oct 12, 2020 9:50 pm

AMother‍  That is great news! Can you take notes or possibly record the meeting?  I usually missed half of what was said. It was so overwhelming.  Sending warm wishes. 
Healing takes time and opportunity. Wendy Tea

Re: Waiting

Posted by AMother on Oct 12, 2020 10:06 pm

Thanks, Wendy Tea. I'll give that a try. 

Re: Waiting

Posted by Mammabear on Oct 13, 2020 10:03 am

When I was diagnosed I said to my mother, at least it isn't one of my kids. She said it is one of my kids. No mater how old the child, they are still our children and I fell terrified for Amother. 

Waiting
Cancer teaches us to wait.
Wait for a diagnosis
Wait for a test
Wait for a result
Wait for a treatment plan
Wait for treatment to start
Wait for it to end
Wait to see what side effects will be
Wait for the side effects to pass
Wait to hear you are in remission
Wait to feel normal
Wait for a cure
 

Re: Waiting

Posted by MCoaster on Oct 13, 2020 12:43 pm

AMother‍    Hope you get the answers you need today.   Warm thoughts.    MCoaster

Re: Waiting

Posted by Lianne_Moderato on Oct 13, 2020 4:31 pm

Hello and welcome AMother‍ 

First of all, your username really does say it all. I know how hard it was for my mom when I was diagnosed and I was in my 40's. ( we are always their kids eh?). But this must be even more challenging for you given your son's age. I am glad you have an appointment tomorrow. Wishing you well and await your update as you are able.

Take care
Lianne

Re: Waiting

Posted by AMother on Oct 13, 2020 9:14 pm

We got the diagnosis. https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-digestive-system-tumors/fibrolamellar-hepatocellular-carcinoma
 Fibrolamellar hepatocellular carcinoma and I'm told it's incurable. We can try to extend his life and make him comfortable but that's about it. He's twelve and we're getting a terminal prognosis. We 're shocked. 

Re: Waiting

Posted by Lacey_Moderator on Oct 13, 2020 9:23 pm

‍ 
​​​AMother‍ 

​​​​​​My heart goes out to you. That is news that no parent should ever have to hear. 

Please know that we are here for you every step of the way. 

Is there a team of supports to help? You may find it helpful to call our cancer information helpline for additional support at 1-888-939-3333.

You are in my thoughts. 

Lacey

Re: Waiting

Posted by Brighty on Oct 13, 2020 10:03 pm

I read your post and dont even know what to say AMother‍ .  My heart breaks for you.    I just wanted to send you a virtual hug because  no words can adequately decribe what you must be going through.     We are all here for you.
Help is out there. All you have to do is reach out.

Re: Waiting

Posted by MCoaster on Oct 13, 2020 11:44 pm

AMother‍     I am so very sorry.  Life is so unfair.

As Lacey_Moderator‍ suggests the Cancer Society Helpline may have suggestions to support you and your son.   

We are here for you.

Big hugs.

MCoaster

 

Re: Waiting

Posted by AMother on Oct 14, 2020 10:06 am

We're waiting to hear from surgeon's before a care plan can be put together. When we have options, we'll talk to our son. I'm just trying not to think too much about the repercussions until we talk to him and I'm trying not to cry in front of him. Depending on what the surgeons say depends on how we go forward. We don't have an estimate for how long he'll live. I don't know if it's better to just try to make him happy and comfortable or try to make sure he feels like he has a future. Or how to balance somewhere in between. Are we lying if we continue education? I can't deal with the emotional repercussions just yet. It's overwhelmng. 

Re: Waiting

Posted by Mammabear on Oct 14, 2020 11:01 am

my heart is breaking for you and your family. sending virtual hugs and virtual support. 

Re: Waiting

Posted by Lacey_Moderator on Oct 14, 2020 12:55 pm

AMother‍ 

Thanks for checking back in. You and your family have been in my thoughts since I read your post last night.

Waiting until you know your options makes a lot of sense. I hope you are introduced to a palliative care team that has professionals to help you manage your emotions and talking to your son. Sometimes when we cry we give permission for others to fully express their emotions without fear. Tears are okay. 

I went looking for information and found this: When Your Child Has Cancer  that I hope you find helpful. I do hope you give our Cancer Information Helpline a call at 1-888-939-3333.


May I ask where he is receiving treatment?

Here for you,
Lacey