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Any information appreciated

Any information appreciated

Posted by 1worriedparent on Nov 12, 2019 1:18 pm

On November 1rst (which just happened to be my birthday but that's irrelevant) my 17 year old son was sent to sick kids after going to our local hospital with massive headaches and shortness of breath. He was diagnosed after many tests with Acute Lymphoblastic Leukemia t-cell. He has since been transferred to princess Margaret hospital due to his age and birthdate. As his father I've educated myself about his diagnosis and treatments as much as possible but would love some direction on what to expect when his initial treatment in hospital is done and he comes home. Do I keep my job or is it too much to work full time and care for him...........just a little lost I guess.

Re: Any information appreciated

Posted by Wendy Tea on Nov 12, 2019 3:13 pm

1worriedparent‍ , gosh, your head must be spinning with the diagnosis and information you have researched.  I am so sorry that you and your family are facing this serious situation. 
My first thought is dont do anything yet. Wait and see. You will know more as time passes, you will learn lots from the doctors and nurses, see how well your son responds to treatment, what level of care he will need when he comes home. Always keep your employer informed, and your support group too. I think most employers will accommodate you with a last minute decision to continue working or not. Please stay in touch. There are many here who can guide you.
Best wishes 
Wendy Tea 

Re: Any information appreciated

Posted by SLM on Nov 12, 2019 7:41 pm

Hello 1worriedparent,

What a staggering diagnosis for you and your family. 
I agree with WendyTea, that you and your family need a few days to digest the information and speak to the medical team.  At times, Dr "google" can be disastrous and ignite the worst of worst case scenarios.  Never loose hope.  Just like every person, your son is a unique, his cancer unique to him, and his journey with cancer will be unique as well.  Don't jump to make any decisions.  Take the time you need to ponder all information and all scenarios.  There is a lot of information on this site, so digest it in little chunks.  Ask your son what he wants and how he is coping.  It will be very difficult for you to stand by and watch this unfold, but your son needs your strength at times, so remember to take care of you. 
Keep us posted and reach out when you need too.  There is always a caring, supportive comment in the midst of all the chaos. 

My cancer, my rules. 
Be the Storm!
SLM 

Re: Any information appreciated

Posted by 1worriedparent on Nov 12, 2019 7:58 pm

We are taking it one day at a time and I am only getting my information from either PMH or the Mayo clinic as I am well aware Google can be a bad source of information when it comes to medical questions. 
 He started treatment on Tuesday November 5th and so far seems to be responding well to the chemo and plethora of other drugs he is now being given (other than some minor side effects) 
 The fears and questions I have seem to change by the minute, maybe its a lack of sleep or an overload of trying to put understanding into a disease that's so random. He is staying positive and we (my ex wife, my wife and both our families) are doing all we can to keep him positive. Now after nearly 2 weeks in hospital with 3 weeks left to go (that is what were told) we're finding it more difficult to keep his spirits up....
Sorry if this seems random but I guess I'm trying to say thanks for letting me vent here

Re: Any information appreciated

Posted by Aries on Nov 12, 2019 8:08 pm

@1worriedparent‍ - vent all you like here; we will support you as much as we can. Glad things are going well so far though. Your son sounds like a strong individual; with all your love and support, he will have his ups and downs but that's only natural. He's had a lot to process!

Re: Any information appreciated

Posted by Treepeo on Nov 13, 2019 12:51 pm

Hi 1worriedparent‍,

I am so sorry you and your family are going through this.  Your head must be constantly spinning, trying to make sense of what is happening.  And things can change from minute to minute.  Of course you feel lost and confused.    This diagnosis came out of the blue, and you are worried sick for your son.

One positive is that they moved really quickly to diagnose your son and commence treatment.  And he is in great hands at PMH.  They really know their stuff, so hopefully that gives you some comfort.

I can imagine your son is discouraged, because this came as a shock to him, too, and his life has suddenly taken a dramatic turn for the worse.  All I can suggest is that you continue to support him as best you can.  It is important for him to have someone with him that he is not afraid to confide in.  So often, we hold our feelings back for fear of making our loved ones more worried or stressed.  So maybe ask your son if there is someone he wants to connect with, and if he would like to speak to them privately.  Maybe some of his friends can visit to lift his spirits as well.

My heart goes out to you.  Please keep us posted as to how it is going.  And try to take some time for yourself as well.  You can't help anyone when your own gas tank is empty.

Re: Any information appreciated

Posted by Lacey_adminCCS on Nov 13, 2019 1:26 pm

1worriedparent‍ 

You can vent to us here anytime. I'm glad you found our community.

We have a Cancer Information Service that you can call at 1-888-939-3333 to speak to an Information Specialist. They can help with understanding his diagnosis and treatment. They can also help with navigating things and finding support. We also have the following information I invite you to look over: When your child has cancer. It includes info about when treatment is complete. 

With him being 17 he's not quite a child or an adult yet. It might be helpful for him to find people his age to connect with. Young Adult Cancer Canada is a great resource. They have a private group for young adults as well read more here. I really liked the suggestion of checking in with him and seeing what might feel right to him. Is there a special friend he would like to talk to?

Has a Social Worker connected with you?

Sending strength,
Lacey

Re: Any information appreciated

Posted by Chichimus on Nov 13, 2019 3:37 pm

I was diagnosed with APL summer of 2018. Came completely out of the blue and I was amazed at how fast I was in hospital. Literally a matter of hours after going to my Dr. Wasn't even allowed to go back out to my car. 
it certanly is a lot to take in. Your life is just put on hold. Fortunatley your son will be getting very good treatment and should have excellent staff. I was in VGH for 5 1/2 weeks and then out patient for about 8 months. Don't hesitate to ask questions and if something does not feel right bring it to the attention of the staff.
The meds are better these days and they had me on good anti nausea drugs. Thought I was doing really well and decided to skip them one day. Don't skip the anti nausea pills! 
If he is on steroids tell him to be prepared for mood swings. I would go from being mad at my crossword to being almost in tears because I ccouldnt remember what the date was. Just had to remind myself it was the drug.
There are social workers who can assist with all manner of things. If you or he have not encountered them ask about them.
The first few days are are whirlwind. You are in a hospital bed, no one could visit me without a mask, you only have what you brought with you and there is a steady stream of doctors, nurses, pharmacists,  nutritionists etc etc. And you only remember a fraction of what they say. But you can always ask for another visit when your head stops spinning. 
And get him a journal to write in. I'm not usually a diarist but found it helped to keep track of things, rant, and as time progressed it was good to see that I had come a ways along. 
Don't be hard on yourself and this is a time to lean on people. You will soon find out who they are. 
Sorry if this is a little jumbled but I am on my phone and forgot my glasses.
Give him my best.

Re: Any information appreciated

Posted by 1worriedparent on Nov 16, 2019 6:59 pm

Yeah fast would be the best description, 3 hospitals in 4 days..........things seem to be slightly calmer now, the onslaught of hospital staff has slowed a little, still lots of paperwork and financial s to decipher but currently we're just trying to keep him motivated and moving around in the hospital as much as possible. He's very curtious (shy) and embarrassed , anyone have a suggestion on how I can convince him to stay active when he has the energy to be active and walking around??? The doctors have told us that he is right where they expect him to be with his blood counts and all at this point and the nurses keep telling him to be more active. He's talked to a social worker and psychologist and they seem to think he's ok mentally, I'm at a loss for motivating him!!!!

Re: Any information appreciated

Posted by Wendy Tea on Nov 17, 2019 11:59 am

1worriedparent‍ is there an opportunity to talk to a social worker or a physiotherapist. Do you have access to an exercise room. I know the weather is dreadful at this time of year but when it is nice can you go outside for fresh air? I am sure there must be some options. Are there any video games Xbox type games that require some movement? Hopefully some folks here have better suggestions than mine.
We are thinking of you all as your family travels this road.
Wendy Tea