Between a rock and hard place

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Have you checked with his oncology office to see if they have any social workers? Many hospitals and oncology units have social workers that specialize in helping families with issues exactly like this. Their job is to help patients and families sort through the most complicated situations. They will know all resources and options available to you in your area, and can help you. They are also trained in mental health, so they should understand the intricacies of situations like yours. If there aren’t any on staff where his oncologist is, they will be able point you to one. I’d highly recommend this.

I don’t think anyone is ever quite the same after cancer. I know I’m not. But one of the things that helped me the most after chemo was trying to get back to normal the best I can. “Normal” is not necessarily the same now as it was before, but getting the back to ‘normal’ routines, activities, work, school, social life, etc helped a lot: emotionally and physically. Normal for me will be different than normal for him, but I think it’s important to figure out what that is, and support him in trying to get back to it, as he is Physically able of course. It’s not unusual for survivors to get depression or anxiety afterwards. And getting back to normal will help there.

The “fog” of chemo is also real, or as some call it “chemo brain”. Not everyone experiences it, but a lot do, and I did. For me, going to school and learning helped with that. I also started learning a new musical instrument, because it helped. If you can find someone who works well with children with autism, Maybe taking art or music lessons would be a good place for him to start piecing himself back together. And I use that phrase seriously… it really can be like piecing yourself back together, or even completely rebuilding yourself; physically, emotionally, mentally, and sometimes even spiritually.

Just to reiterate my first point…I really suggest talking to an Oncology Social Worker, if you haven’t already.
 
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Domer90 said:
Sadly, no, because the support groups are in the city. There are none local. Because of traffic, it can take up anywhere from 45 minutes to three hours to get there.
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Do you drive an hour for his treatments or is that in town?
PapyrusDouay said:
Have you checked with his oncology office to see if they have any social workers?
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Hospitals and med teams have social workers. They may have a support group in your town that you do not know about. They would be able to set your son up to talk to other people around his age who have been through what he is going through, with Skype and Facetime, it does not matter if they are an hour away, you can have a support group meeting.

We found that clinic days were their own sort of support group. We met new diagnosees, people who were further down the road, the talking in the wait room was priceless.
 
The oncology social worker referred me to Psychology Today to interview therapists. I tried one and she was horrible. Then God’s intervention led to the hospital’s anxiety treatment team. I have no idea why they didn’t consider this, except my son was in therapy to handle school anxiety from, of all things, girls why wanted to do sexually sinful things with him. He had no desire, and two girls filed false allegations about him (not worth going into). But he is anxious all the time.

He played trumped and to give it up because the tumor lay between the lung and heart. He can’t take a deep breath because of the now dead, infected tumor. This is such a rare cancer, we were all asked to be a part of the clinical trial.

But we feel he needs more CBT than he is getting. And their department covers many of the facets my son has trouble with. It’s the first sign of Hope I’ve received.

Thank you everyone! God bless.
 
I don’t have any advice here, just I’ll remember you and DS in my prayers
 
Home/hospital school?

Seems like it could work. at 15/16 they are plenty capable of taking online course work too. Not sure how feasible that is with the medical situation, but could keep him from getting behind and to focus on life after cancer.
 
Since the oncology team released us from his care, their social worker is not available.
 
He is home schooled now. Honestly, they have been great. Just when he goes in the community, he picks up viruses that adults fight off.
 
I hate to start out with a rant, but I think this needs to be said:

So, his pediatric group you initially took him to “blew off” his symptoms! That’s the trouble with a lot of these doctors these days – they have the presumptuous gall to assume one’s legitimate symptoms are all in the patient’s head or some other excuse to not give a care! I hear about that kind of attitude from the medical profession all of the time, and have experienced it myself on several occasions.

Why did it take so long to get back the results of the chest X-ray? Overly busy? Incompetence? Inefficiency? Did somebody simply forget about it?

But, you’ve asked for help. I’m not sure what to tell you, except to focus, now, on the best way to get your son well again, whatever that takes. Include prayer in the process, and try to deal ONLY with medical practitioners who care and know what they’re doing. Not that easy to find, these days.

I’m sorry he has contracted this disease, and I’m sorry you had to deal with so-called professionals who were all too quick to dismiss his symptoms which might have been more easily treatable had they paid attention, listened to you, and got after the cancer a lot sooner.

Just one more example that things need to change in the way medicine is practiced.
 
Your rant is warranted. He goes to my PCP. In the emergency room, the doctors didn’t know what to make of this softball sized mass in his chest. So, they were him set up for a CT scan. The CT scan showed it was a solid mass.

If at just 1 of his former pediatricians ordered a chest X-ray or bloodwork, that would have been helpful too.
 
Where does he go for follow up care? Annual scans?

In this part of the world, people are not “released” from oncology until they are NED for a year.
 
Follow-up care is either PCP or specialist. He does have an oncology appointment with PET/CT next month. Since he is cancer free, he goes to the oncologist only for routine appointments to make sure it doesn’t come back.
 
I’m so sorry that your son is suffering like this.
First the Autism and now also Cancer.
It’s awful to think that he is being excluded from things.
Sometimes I wonder is it the excluding kids “naturally” this way or is it some behaviour they have learnt from their parents…
Are there any social groups nearby for kids with Autism that he would be interested in attending?
 
We have tried autism social groups. Sadly, the expression, “If you have met one kid on the spectrum than you have met one kid on the spectrum.” DS has been bullied out of social skill groups by kids who have less impulse control. The pain management psychologist he saw at CHoP suggested seeing this one therapist to improve his social skills. When he heard her suggestion, he said he was through with the practice. He will not go back.

Thankfully, I begged him to reopen his Instagram account and look for like-minded people to follow. He caught up with a middle school cyber classmate, and the two of them texted for more than an hour on all kinds of subjects, just as they did when they were classmates and often partnered together for group work. Both were nominated to the junior honor society. There were kids looking to see how he was doing. Remission has been tough, and he will probably have to drop to part time level.

He is especially popular with younger kids who he senses gets picked on by older kids. He is not afraid to defend those in need and protect them. These kids tend to be homeschooled after leaving Catholic school, which is sad.

Thank you for asking.
 
Actually, I lied. He will have a chest X-ray next month and I assume bloodwork. His GI issues are continuing, as is he lethargy. He had more GI tests sent off today. God bless my husband for collecting the samples for the test ordered.
 
Your son sounds like an amazing boy with beautiful parents:)

I am glad to hear he has reconnected with a friend through Insta.
What also about kids from the local Church -can your son do anything social with them?
I would hate to hate to hear that kids from Christian families are excluding him too?
 
Well, many of them go to the HS he was bullied out of. He has been too sick to do much with them. We are trying to get him to youth group, but the times he went, we had to pick him up and rush him to the ER.

He is also watching my dad (who he was close to) slip further away from him due to mini stroke dementia. That doesn’t help his anxiety and depression.

And we have been far from holy parents because we trusted teachers who were impatient with his naive social skills and learning differences. And we trusted psychologists who could not connect with him.
 
He is extraordinarily pious and discerning the priesthood which I fear he will never achieve due to contracting cancer at such a young age.

He really marches to the moral beat of his own drum, and it probably one in 10 million who is chaste, respects his body and has no interest in video games (because they are violent) or porn.
 
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I am so sorry to hear about your dad.
What a year you have had!

Can you be “blamed” for trusting the Psychologists etc when they are promoting themselves
as being capable/effective?

To me it seems more like a failing of the healthcare system. Perhaps it is the same for teachers too that they are not being trained well enough to understand students with Autism and to show patience?
 
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Teachers aren’t fond of kids with learning differences because they are entitled to have an Individualized Education Plan. For the teachers, this is a time sink. While son has issues socially, he is very bright. I have had multiple calls on why my Little Einstein cannot perform well on standard tests. It all boils down to the fact he learns differently. Instead of being helped with his disability, he is despised for it. We have not found that with cyber school.
 
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