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#131529 03-17-2011 09:17 PM
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I need some help on how to support him. I was first diagnosed when he was four so I know this has been a rough two years for him. A few weeks ago he started talking about wanting to stay home and be homeschooled. He has said he wants me to homeschool him because we do not get much time together. Then this past Friday i had conference with his 1st grade teacher. She was telling me about a story he had written based on a picture. The picture had a man, two kids, and a horse. Andrew wrote "The dad was taking the kids out for a walk. Mom was not with them because she died." He still talks about the time I was in the hospital and says he was sad because "it was like I was dead." I am so heart-broken that he has been feeling like this. Any ideas on how I can help ressure him that it is all going to be okay?

Last edited by walknlite; 03-17-2011 09:18 PM.

Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Gosh Angelia, Im sorry to hear your little one is struggling with coping with your illness. Kids bounce back quickly but you never know what they keep inside. I know a woman who lives locally to me who is an oral cancer survivor. Her name is Eva Grayzel. She wrote a book for children coping with a sick parent. If I remember correctly, I think she gave me her book. I will look for it and send it to you. If I cant find it, I will contact her to get one to you.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jan 2009
Posts: 1,844
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My oldest son was 7 when I was diagnosed and the hardest thing I ever have had to do was tell him I had cancer . I still vividly remember him breakdown and cry "but Daddy I don't want you to die!" It still breaks me to think of what he went through emotionally and still goes through .

As I've recovered he has too and the closer I get to getting back physically to where I was the better he seems to get. he still has to put up with cruel kids that make fun of him because of how I look, but he is a trooper and constantly tells me how proud of me he is because I'm a survivor and beat cancer. he's 10 now and seems to have been able to cope better the older he's gotten. we did have him in counselling for about a year and that did help. To me it just reminds me to love on him as much as I can as its tough on them too.

keep your chin up, it does get better, time heals.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Posts: 101
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My kids were 11 and 8 when my husband was diagnosed the first time. Each night I would go and crawl in bed with them and start a conversation. Some nights I would ask them how they thought the day went, or ask them what was on their mind that day. I made this an intentional act each day and during these times they would pour out their hearts to me. We had a lot of questions about the "what if's" and I actually made them go through each what if, step by step. topics like"what if dad can't go back to work?, what if he can't talk again, or eat again, or what if dad dies? We had lots of tears, but I made them see the logical things that would happen, if one of their scenarios occurred. Their imaginations go great big through a sickness of a parent, they have very little experiences to compare to, therefore they go straight to worst case scenario.
One particular night my son was angry, all night long he had been aggressive and
argumentative and the tension was unbearable, so I went and got every plate in my cupboard and we went to the basement and threw every single one against the cement
floor. Sometimes you have to reach a Boy in boy language..(what boy doesnt love the
sound of something being demolished) my son was unable to express his frustrations
with words, so I let him do something tangible. ( yeah I had to buy new dishes..didn't
quite think that one through before hand, but I hated them anyway..so it was a win win
after all) after busting the dishes into a million pieces the tension was visibly gone and
my sweet boy had returned. we swept them up and that summer when things were
better with Erik, my son and I made two steppingstones as our little reminder of that
night.
If things get too bad, it doesn't hurt to find a little counseling help, just make sure it's someone who deals with PTSD in children.
Jennie


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
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Angelia, I emailed Eva and she is sending me a copy of her book. I will pass it on to you. Please PM me your address. I agree that a professional therapist would be beneficial to your little one. Good luck!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Aug 2005
Posts: 307
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Joined: Aug 2005
Posts: 307
Hi Angelia,

I'm just chiming in that I think a professional therapist would really help your little guy. I've gone for therapy for certain situations in life and it's always helped me a lot.

Good Luck,

Shelley


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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