My colleague's son is dying of ALL. I would like to know what we can expect as the end draws near.?

Question

What might we be looking at in terms of pain, comfort, and the deteriation of his body?

This is the type of cancer Spencer has. Despite being generally easy to treat, he has not responded well to regular and experimental protecals. He was diagnosted durng Katrina and has been at St. Jude. He had a very short-lived remission - about 3-6 months. The cancer cells are in his bone marrow - 30% blasts right now - and now also in his spinal fluid. His pain level is high. Please help us, teachers who have taught him, understand what to expect as we try to deal with our feelings and explain what we can to his school mates by age.

Acute lymphocytic leukemia (ALL). This is the most common type of leukemia in young children. ALL accounts for 80 percent of all childhood leukemias.

Sorry for the misspellings! :o)

He is still at St. Jude and is already too sick to move back home. He is very scared and wants to continue fighting so his parents are looking into NIH. They have promised him that they will do anything they can to help him beat the disease. His home is not close to St. Jude. We are trying to understand and help from afar.

Hospice is a fantastic resource, I know.

We have been told that his death might be difficult and painful.

Answer 1

Not having gone through it directly, my daughter is in remission for AML. But there where a couple of young kids die of this during her treatment. From what I was told about there passing, they were put in intensive care when it was realised nothing more could be done, they where on high doses of pain medication (which would leave them in and out of consciousness) Eventually a breathing tube was inserted and they where put on life support.

There is the risk of a major infection taking over his body from low white cells, servere bleeding from low platelets, blood transfusions may be needed as the cancer cells over take the bone marrow stopping the development of blood cells.

Answer 2

I'm sorry to hear that. I'm an oncology nurse here in ohio, and this is something that i have to handle every day.
1.He wont have an appetite, he will be very sleepy, no engergy. Most the time it is very peaceful. The best thing to do for him is keep him comfortable.
2. He may loose control of his bowels and urine, so a depends may be an answer, or just keep cleaning him.
3. A lot of the time, depending on his circumstances, he may tell you when he's going to die. that sounds weird but people know, and they will express that too you.
4.Also they may become delerious. Meaning one day they will know you, know what's going on with them, and the next day, they dont know where they are at or who you are. dont let that discourage you, that's part of the dying process.
5. He may start to lose muscle mass, this usually happens over a long period of time.
6. Finally, sometimes you can smell death when you walk into the room. It really just depends on the circumstances, but I can tell when someone is getting ready to pass, most the cancer patients are elderly. Good Luck, I hope this has been a good help. Just keep him comfy, and if you think he's in pain, call the doc and ask him what you need to do to get some meds for him. they can give him full morphine with an in-home nurse that comes in and takes care of him.

Answer 3

First of all they might want to consider a second opinion about alternative treatment protocols. As far as what to expect as the end draws near, it is different for every ALL patient - some get an infection and because there white counts are so low they can't fight it and some die from internal bleeding die to low platelet counts. I know that some children talk about bone pain related to the disease and the chemos. I know some children (babies which are considered high risk ALL patient) that have passed away, and they went very peacefully and with very little pain.

***again I really urge them to find out as much info as they can about treatment alternatives. ALL generally has a very high survival rate (over 95%) especially in children between the ages of 3 and 11. Good luck to them.

Answer 4

Acute lymphoblastic leukemia is the most common malignancy diagnosed in children.

http://www.emedicine.com/ped/topic2587.htm

I'm sorry your colleague's son is not doing well. If his Dr says he is dying then his parents should call in hospice now rather than later. Hospice will be prepared to address his pain, comfort and end of life issues better than anyone else. Here is a good page to help them get started with hospice.

http://www.hospicenet.org/html/preparing_for.html

Answer 5

ALL...trust me it's no fun at all. I have it and I'm still trying to do my best to defeat this thing. Best of what you can do is just be there and don't act like I'm sick I don't know what he is like but hell I hate it when people say I'm going to get better soon (I'm also an SCI so I have no feeling under my chest) and trust me it gets me frustrated when people tell me I can walk again. I get the point.

Best of all, just be there for him, when I'm in pain I like to be around people that I love, family, friends and joke about the future. I know that death is nothing to be joking about but it tends to ease things up a bit.

If he like to talk to someone that knows what he's going through, feel free to give him my email, I'll be glad to chat it up with him and what not. My email address is [e-mail]

Good luck

Answer 6

Check with your local Hospice. When my Dad had a brain tumor, they handed out "end of life" information. It covers the last few weeks. It's pretty powerful. Hospice is an incredible, caring program....I'm sure they can help.

Answer 7

ALL is acute lympocytic leukemia... are they on hospice? The family should ask the hospice nurse ..that is what they are there for...if they are on morphine...then they will gradually lose consciousness and the ability to swallow (even saliva) and decreased eating and drinking leads to decreased urine and bowel outputs... on morphine , they should be fairly pain free tho..if they ARE on morphine.

Here are some links to ALL...
http://www.leukemia-lymphoma.org/all_page?item_id=7049
http://www.nlm.nih.gov/medlineplus/ency/article/000541.htm
http://en.wikipedia.org/wiki/Acute_lymphocytic_leukemia
http://www.leukemia-lymphoma.org/all_page?item_id=9346
http://www.mayoclinic.com/health/acute-lymphocytic-leukemia/DS00558
http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/ALL/index.html
http://www.cnn.com/HEALTH/library/DS/00558.html
http://www.healthsystem.virginia.edu/uvahealth/adult_blood/aculymph.cfm

Answer 8

This question made my heart drop. I am so sorry.. sometimes, it is better to let go than to continue treatment and let him suffer. My prayers are with this little boy, this little angel.

Answer 9

Here is a site with the best disease info:
http://www.leukemia-lymphoma.org/hm_lls
Best wishes

Answer 10

I think you mean ALS, also known as Lou Gehrig's disease.
this website should give you some good information..... http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm