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please help

Finny
  • By Finny
  • Posted September 12, 2009 at 8:18 pm · 11 replies
  • In Newly diagnosed
  • Shared with the public
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My 15 year old son was diagnosed in May with ALL T cell. We have been told he'll have three years of treatment. He has finished cranial radiation and we're almost done with interim maintenance. Other than the initial diagnosis, we've only had one unplanned hospitalization. He has developed two chemo allergies, but is still on track for three years of chemo. Delayed intensification will take us up to Christmas, provided he doesn't have any more set backs. He is very depressed. I've homeschooled him for the last seven years. He is to weak to maintain his regular routine & hobbies. I'm not sure what to expect for school work. His social worker is in touch with us. Can anyone offer suggestions on schooling, family routine/life, sibling help...ages 8,20, & 21.

Explore topics in this discussion:

Cancer Allergies Depression Physical therapy Stress Reglan

11 replies

alclmom

Finny, I am new to this group, I am no expert, but I share your concerns and thiese are some things that worked for us.
My daughter (age 13 now)was dx June 2008 with ALCL which is a subcategory of Non-Hodgkins Lymphoma. She just completed a one year course of treatment. She stayed home from school last year, but has just started back and is adjusting ok.
Our biggest source of support was the Psychologist at our hospital. It was forced in the beginning because she did not think she needed the therapy, but now my daughter now has a great relationship with her and looks forward to meeting with her still.

Does your son see anyone? The Psych. was also very helpful with my other 3 children. (ages 19,17&9) I set up a "supersib" Carepage for my 9 yr. old, she loved that attention and gave her some purpose during all this. The older ones did ok with things, lots of school support on their end.
It sounds like you are through the toughest part of therapy, although I don't know how he is handling things physically. Has he been very sick from the chemo?
It might also help to get him involved in some physical therapy if the dr's allow it. That will get him out and moving which will raise levels of the good stuff in his brain to fight off depression. Hang in there, sounds like you are doing a great job.
Peace to you and your family.
Sue

njs

Hello there,

My son was diagnosed with high risk T-cell ALL a little over a year before your son, in April 2008. He was 11 at the time, and is now 13. I still feel like a newbie in all this. Its great that your son has only had 2 hospitalizations up to now.

I will tell you that until my son made it into long term maintenance, he was very depressed. I think its just the constant chemo, no energy, the total assault on all parts of his body and it never stops. If you think about it, just about the time the chemo maybe starts to clear a bit its time for another dose of something. As you approach long term maintenance the body gets a break and your son will most likely start to have more energy and feel better. My son was home tutored for 10 months because that is all that he could handle. Most days during those 10 months he could barely get off the couch. I would not stress over it too much. Your son is dealing with an incredible amount at this time. If he has to redo some schoolwork that would not be terrible. When he feels better then you can get back into a routine, but right now you just get from appt. to appt., at least that is what we did!!

Have you considered joining the ACOR group that is dedicated to ALL kids? http://www.all-kids.org/index.html Its an amazing group and each child has ALL.

Hang in there.

Nancy, mom to Dale, 13, DX with high risk T-cell ALL on April 16, 2008 now in LTM! (www.carepages.com at daletall)

Finny

Dear Sue,
Thank you for your reply! Caleb wasn't very sick with the chemo at first, but now the nausea & vomitting are more prevalent, even through we're in interim maintenance. We did switch anti-nausea drugs and that is helping. Thanks for your help about the hospital physcologist, we've contacted our hospital social worker and we've received some help that we need to follow up on. The yucky feelings are always there, but it seems like they can't always be addressed when side effects of chemo are raging. I'm curious about the ibs carepage you mentioned..our youngest is 8 and I think this sounds great!
Thank you soooo much for your help!

Finny

Dear Nancy,
Thank you for your reply. We have our eyes set on long term maintenance. We should be there by Christmas...as long as we don't have any set backs(infections). His doctor wanted him to get a flu shot yesterday, and recommended that the whole family get them. Except for my husband(he works with people from all over the states and Canada) the shots will be a new thing for us. Have you or any other readers had to get the flu shot for a cancer situation?
As far as Caleb's school work goes, I appreciate your advice. Some days he just sleeps and not much gets accomplished. We are trying a couple new things...an electronic recording device and something called Dragon for the computer that will put his voice into text. He loves to write but doesn't have the energy to hold a pencil some days. Another thing that we miss is reading..I'm able to substitute a lot of material with books on CD and educational DVDs..we've discovered that reading for extended periods compounds his nausea..did your son have this problem? Thank you again for your help!

alclmom

Hi Finny,
The website for Supersibs is www.supersibs.org, it's a great tool for parents and kids, you can click on programs and services and "create your own sibling care page". It's real easy to set up. Do you have a care page for your son? Another great tool is a care calendar, it allows a friend to manage it(or you) to organize other friends/family to sign up for meals, chores, etc. http://www.carecalendar.org/ GREAT help to me during my daughters treatment. Rather than asking all the time, this allowed people to sign up with what works for them.
Email me if you need more info, our best to Caleb and the whole family, I am sure to keep in touch.
Sue

Finny

Dear Sue,
Thanks for the links, I'm especially excited about super sibs for Donovan! God Bless!

njs

Finny,

Don't let the nausea get ahead of your son. Sometimes you have to keep asking for something until you find what works. My son was on Kytril, Reglan all the time, and still it did practically nothing. Constant vomiting was a normal thing for him. After over 3 months of this, one NP looked at me and said, "He really should not be vomiting this much!" I'd been telling them over and over, and I am not sure that I was really believed up to this point. I'm guessing that when I said he threw up they thought it was here and there, as opposed to off and on all day every day. My son was also on an Nasogastric tube because he could not eat. The result of this NP finally realizing that vomiting was a constant thing was that we were given an RX for marinol which is a marijuana derivative. It worked! After more than 3 months of constant vomiting we were able to get it somewhat under control.

Holding a pencil, yep that could be tough from the neuropathy. Dale had hands that shook all the time, too. Some days with the tutor he could get some things done, other days they just watched a video. The tutor only came for 5-6 hours per week. The rest of the time he was flat on his back on the couch, or else we were at clinic.

The rest of the family got the flu shot so that no one brought it home to Dale.

Supersibs is an amazing group. My daughter who is now 16 loves to get 'her' packages. They will send a small something every once in a while, something that lets the sibling know someone cares about them.

Another comment- have you heard about radiation somnolence? It happens about a month to 6 weeks after finishing the radiation. It was mentioned in the papers we got with the radiologists, but were then told that its not common. Well when out of the blue Dale started sleeping 22 hours at a shot, would wake up, fall back to sleep 2 hours later and sleep hard, I was worried. I went to the ACOR ALL group and asked the parents. What I found out is that large numbers of kids do have this, but the radiologists don't usually see the kids past the 8-10 days that they are getting the treatment. By the time the somnolence hits, the child is long gone from any interaction with the radiation doctors!! Just FYI cause it scared me.

Nancy, mom to Dale, 13, DX with high risk T-cell ALL on April 16, 2008 now in LTM! ( www.carepages.com at daletall)

Finny

Dear Nancy,
Thanks for the info on radiation somn. Do you know if there is a time line for this? Caleb ended cranial radiation in late July. We're more than half-way through interim maintenance and he is very tired. His last chemo was Friday and his counts were good...no blood or platlet trans. needed. He isn't getting the PEG or it's substitute because he had developed allergies to both. He did have a short hospital stay prior to Labor Day for an infection, my husband and I thought Caleb would feel better in this phase, but he is tired. Yesterday he got up , ate breakfast,and asked if could could lay back down for a few minutes before we started school. Donovan and I worked on his school work, took care of the livestock and produce, did laundry, and had lunch...periodically checking on Caleb. Caleb slept until two! I fed him lunch and took him with me for an appt. at our family doctor & the library. We came back home and he went to bed for the night! Could this be related to his radiation, the ALL, or growing spurt? He is 6ft & still growing.
I'm sorry your son had such a hard time with nausea. Caleb started out on Zofran, but then refused to take it anymore because it didn't help...the kytril seems to be working a lot better.
Thanks again for the supersib site, Donovan had a lot of fun with it yesterday! Finny

njs

His sleeping all the time could be the radiation somn. starting to happen. They just sleep, sleep, sleep. Give it about a week or so. The one concern is that some kids are so tired that they don't keep hydrated enough. I know what you mean about the PEG allergy. Dale developed an anaphylactic reaction to the PEG, very scary. We had to call 911 for that one, and visit our local hospital. Yikes.

Thing will get better, though I don't want to make long term maintenance (LTM) out to be the panacea of all. There are still ups and downs. We've been on LTM for 9 months and we've had neutropenia at least 3 times, been inpatient twice (once in June and just last week) had chemo holds and the flu, too. But in between Dale has been able to be way more normal, so that is nice. For that I am grateful and try to enjoy the small things.

Hang in there, you are in the home stretch of intensive treatment.

Nancy, mom to Dale, 13, DX with high risk T-cell ALL on April 16, 2008 now in LTM! ( www.carepages.com at daletall)

Finny

Dear Nancy,
Thanks for the reply. I appreciate your honesty about maintenance. When /did his hair start to grow back?

njs

My son's hair started to grow back once he entered long term maintenance. He has always had quick growing hair, so it started back pretty quickly. By the time he returned to school ( after being out for 10 months) he at least had hair. Very, very short but it was hair and he was not totally bald. Hope this helps.

Nancy

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