So sorry to hear about your daughter's diagnosis.  And very sorry to hear how badly it is affecting your son.  My youngest is my child with leukemia, and my middle child has had an extremely rough time with everything ("rough" is the understatement of the year).  My youngest was diagnosed last November, and my middle child (8 then) was virtually unable to function.  Constant calls were coming home from school re her crying and not being able to participate, and she didn't want to be away from us.  She sounds a lot like your son.  I can't lie -- it got really, really bad.  I was so much more scared for her many times than for my child with leukemia.  She started having anxiety attacks, entered a deep depression, and even started cutting herself.  When the cutting began, I realized that it had to stop NOW, or else she might really hurt herself down the line.

I'm telling you this because I want you to know that, unfortunately, I don't think this it that uncommon.  But that doesn't make it easier to deal with.  The time you have set aside for your son sounds good.  The hospital also suggested involving my middle child more, ironically, in my youngest's treatment.  And I think they were right.  My middle child was so fearful that my youngest would die, and always felt we were holding out on her (ie, when we told her things were going fine, she really didn't believe us).  I also started my middle child in therapy.  Unfortunately, within 3 visits to the therapist, the therapist told me that my middle child seriously needed medication to help her through this.  So she is now on Zoloft (after an adverse reaction to Prozac).  And she is doing relatively well.  The probability is that your son will never need meds.  But I would urge you to get him into counseling.  We realized a little too late how much my middle child was dwelling on her fears all day long, allowing them to completely paralyze her (and yes, she also started having stomach pains, and giving up things she loved to do). 

The siblings are the often forgotten victims in this whole cancer tragedy.  They are terrified of losing their sibling with cancer, but also jealous of the attention focused on their sibling.

I hope something I said helped -- if only to let you know that there are others with the same concerns as you, and that, with the measures taken above, my middle child (now 9) is doing fairly well.  She is still in counseling, but doing so well the therapist said we might cut it down to biweekly. And she is still on meds, but the alternative for us was terrifying.

The one thing I learned that I should have done with my middle child, in retrospect, is allow her to be more involved in her sister's treatment (ie hospital/clinic visits. etc), and to openly discuss her fears with her.  When she held them inside, they paralyzed her.  She needed to be able to talk about her fear of her sister dying, of her feeling "invisible" (her words) after the diagnosis, etc.  She needed us to acknowledge openly with her that something horrible had happened, and not just paint a rosy picture of the entire thing (ie, the prognosis is good, there's nothing to worry about, etc).  These are smart kids, and they know that there IS something to worry about.  They need to talk about it.

If your hospital has a child life specialist, they may be able to work with your son too -- definitely ask.

Any other questions or just need a place to unload your worries -- please let me know!

Things WILL get better.

Ann

I CAN'T BELIEVE YOU WROTE THIS POST, BECAUSE I ALMOST POSTED THIS QUESTION LAST NIGHT!

In January 2008, our then 8 year old big sister contracted chickenpox.  Of course with a leukemia patient in the house, I panicked!  I immediately called her grandmother to come get her, and she spent the next seven days bouncing between her grandmother's and a friend's house.

A few days after returning home, she called me into her room, and told me she couldn't breathe.  She was having an anxiety attack.  After much discussion she asked me if she was going to make her brother die because she had exposed him to chickenpox.  Needless to say, my heart sank.

I considered counseling at that time, and after a few days she seemed to be fine, so I never made the call.

About a month ago, my now 10 year old big sister started calling daily from school with "stomach aches."  I took her to a pediatric gastroenterologist to run every test possible.  Nothing physical was found.  That developed into full anxiety attacks a few days later.  Later her therapist explained to me that just as we are all "grieving" our lives before cancer, so is she and that often translates into a separation anxiety disorder - probably the reason your son doesn't want to go to school or be away from his family.

She started counseling and has been gradually getting better each day.  I don't know how old your son is, but if you think he could possibly talk about his fears, I am sure counseling would help.

I also talked to the therapist this week about biofeedback counseling.  It is an alternative to medication, and I personally know three children who have been helped and their issues completely resolved through this therapy.  Look into it... it sounds a little crazy at first, but the techniques have been around for a while, with documented success.

Biofeedback will be the next step for us if our daughter gets "bad" again, and has uncontrollable thoughts of fear that she can't stop or control through conventional means.  After that, I am totally open to medication if it is needed.

Hope that helps!   I am glad to know we are not the only family going through this!!!

Melissa

Sign him up for super sibs. My son Matt loves getting stuff from them. They sent a trophy to him and he still shows it off to everyone. Also if your facility has a child life department talk to them about what is going on. Spending one on one time with your son is a great idea. I try to do a little extra with my non-chemo kids - sometimes we go somewhere, even if it is just a walk. I try to never pressure them to talk but leaving the conversation open to anything often reveals what is going on. Alex (ck) started pre-k last year and I could not figure out why Matt (non ck) was throwing big fits all the time. Then one day he mentioned that his feelings were hurt because I didn't go to all of his field trips the previous year but I go to all of Alex's. I knew he was upset that Alex and I were gone most of the previous year but I did not realize that missing Matt's field trips was that devastating to him. My daughter had issues with teachers at school constantly asking how Alex was doing. So I gave the teachers his caring bridge site and asked them to not ask about Alex unless my daughter initiated the conversation. It may help to talk to your son's teachers at school (assuming he is in school) and see how he is behaving in the class.

Good luck

Gina

The sibling issue is a complicated one for us as well.  We have not felt the need to go to counseling as of yet, but will definitely seek help if necessary in the future.  Dillan is almost 9 years old now, 8 when Justin was diagnosed at the age of 10.  They are extremely close brothers--do everything together, even have to still sleep in the same bed.  We worry about Dillan's emotional health a lot.  He feels anxious about people bringing in germs (mentioned this about Thanksgiving), and guilty doing anything or going anywhere that Justin can't.

He knows way too much about cancer.  Last time we were at clinic, he was complaining that he couldn't breathe and being a little bit of a pain.  I'm not sure it was for tyring to gain attention from the nurses, or anxiety.  I'm not bringing him with for Justin's LP tomorrow!

I am schooling them both at home for the time being---while we wait for the end of flu season as Justin just began maintenance a month ago.  I think that has helped a little with his anxiety and in the 'fairness' arena.  Last year he complained about having to go to school while Justin was able to stay at home.  Little did he know that his mother would have much higher academic expectations at home than any of his teachers ever had!

If the school issues continue, I would consider letting him stay home during this stressful time.  Kindergarten can wait if necessary.  Many kids don't even start until the age of 6.

Good luck, and know that you're not alone....

www.caringbridge.org/visit/justinburkhardt

Tonya

Our youngest child is the sibling - she is 6 now 5 at diagnosis.   She has definitely had issues too.   We did a little counseling, however what has helped most is involving her more in the treatment.   We realized she was sitting at school worried about Lily, so now we call her teacher and update her after each clinic visit.   Especially the bigger visits such as spinal days.   We also are going to Gilda's Club to Kids Support.  This is a free service for kids who have someone in their family with cancer, either they have cancer, a sibling has cancer, or a parent.   Both my kids (cancer and noncancer) have benefitted GREATLY!!!   They love it.  They do art projects and talk about things.,   Then the parents also have a group.   Supposedly they do this at all the Gilda CLubs throughout the country.   My girls have found that they aren't alone which has helped a lot.