4 Year Old Diagnosed with PH+ ALL

Updated on July 16, 2012
S.H. asks from Rancho Cucamonga, CA
22 answers

Hello,
My daughter was just diagnosed with Philadelphia Chromosome ALL (Leukemia) I was wondering if there is anyone out there who has gone through this with a child and what treatments they went through. I have been told that only 3-4% of children get this form of Leukemia and I just was hoping to find someone who has been through this and any advise they might have.
Thanks,
S.

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So What Happened?

Well its been over a month now and I still have not found anyone with the same diagnosis as my daughter, but we I have contacted the Leukemia & lymphoma Society and they are working on finding a mentor family. I still feel like I am in a fog but I want to thank everyone for their prayers and information. We have spent most of the time in the hospital with only about 10 days at home. Due to the Leukemia my daughter developed fractures in both her legs requiring one full leg cast and a brace that has made things difficult as she is not walking yet. With out walking we have had a lot of complications with her stomach and pain and most recently she has developed a fever. We are at the end of Phase 1 and are waiting for a meeting to find out how we will proceed from this point. Her blood counts are too low right now so Chemo is on hold for probably another week. Ahhh it seems like its never ending. Once again I would like to thank everyone for there prayers and support.

S. & Daughter Zoe

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F.L.

answers from Los Angeles on

S., I am sorry I do not know anything about this form of Leukemia. But i too am a single mom and couldn't help but reach out to send a Hug and my most positive thoughts. Please reach out and email if you just need someone to talk to. I really mean that. I have been through a lot and understand how important it is to be able to talk to someone... Wishing you and daughter strength and fast healing.
F.

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T.D.

answers from Los Angeles on

How scary for you, especially since it's so rare and probably hard to find information about the disease and children who have had it. I teach elementary school and had a student a few years ago named Madison who had an extremely rare form of nuerofibromalgia (I think I spelled that right). Her family has created a foundation and website to support families with children who have rare diseases and medical conditions. It is very cool, and I still volunteer for the foundation a couple times a year. I highly recommend that you visit their website and ask any questions you may have there. You'll probably find other families with similar situations, and a whole network of support. Good luck, and remember that you are not alone. www.madisonsfoundation.org
-T.

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R.L.

answers from Los Angeles on

Dear S.,

My heart goes out to you and my prayers are with you. I don't have experience with pediatric ALL but we recently went through this with a close adult friend.

Philadelphia chromosome associated with ALL is somewhat rare in children -- only 2 out of 100, to 10 out 100 pediatric cases are associated with this chromosome, which is the results of the end pieces of two chromosomes (#9 and #22) changing places. It usually arises in a single cell and and grows from there. The philadelphia chromosome is more commonly associated with CML (chronic myelogeonous leukemia), and unfortunately, it is more difficult to treat.

Leukemia is a complex disease. I recommend that you listen to the experts in this field when it comes to medical advice. There was someone who suggested you visit an herbalist -- be very careful with this. While many herbal remedies can be helpful, most have not been tested objectively. They can be helpful, but they can also be very harmful. The person mentioned her mother experience new vascular growth to a badly damaged heart: while this is important for heart disease, this would definitely be something you would NOT want to promote in a person with cancer (especially if you're dealing with a solid tumor, which you're not) as all you would end up doing is feeding the cancer and increasing its growth rate. Also, she mentioned that by the time her mother died, her liver was destroyed and her kidneys were failing. This type of damage is generally caused by toxic activity and can be a direct effect of many herbal remedies. Remember, herbs can be very powerful drugs. The ancient pharmacopeia relied on them, and they do work, although often not as specifically as developed drugs. Many drugs have herbal origins. If you do decide to use herbal therapy in combination with chemotherapy, make sure the doctor knows and responds accordingly or you can end up setting up a lethal situation.

Also, I assume your doctors have profiled your daughter's disease completely. This should be able to tell them (and you) how well her leukemia will respond to therapy, and what therapy to use. Make sure they're keeping up with current research: a report that was issued last December showed that using Imatinib can dramatically improve long-term survival in children with ALL who have the philadelphia chromosome (85% of the children in the trial were disease free for at least two years, vs. 38% of the children who did not receive this therapy: see http://www.docguide.com/news/content.nsf/news/85257102005....

As I'm sure your doctors have told you, you and your daughter are probably in for a long and possibly rocky road. You will need as much support as you can get; financially, emtionally, and physically. Find a close friend or family member who can be a point person for you and ask them to coordinate help and support for you. I highly recommend a website: http://www.lotsahelpinghands.com

This site will let you/your point person set up a coordinated help site for you. DON'T BE AFRAID TO ASK FOR AND ACCEPT HELP! Let people do your shopping, bring you meals, help clean house, do laundry, etc. If you're a member of a religious community, see if they will help you set up a tax-exempt fund that people can donate to help you out. If not, see if your daughter's school can set something up.

If your daughter's doctors have mentioned the possibility of her needing a bone marrow or stem-cell transplant, ask a few people to set up some drives to add donors to the national bone marrow registry (www.marrow.org). This takes some time and effort, but is very rewarding for everyone involved. Even though it is unlikely that a donor would be turned up through a local event, the more people who are included in the registry, the greater the chance that a match will be made for somebody. BTW, the national registry is linked to the international registry, so a donor can come from anywhere in the world.

Contact City of Hope in Duarte (www.cityofhope.org) -- not only can they help with a bone marrow drive, but they are a wonderful resource for care. Much of the work they do there is pro bono -- they will work with your insurance company to get coverage, but will also give care if there is no insurance or if insurance is maxed out.

Finally, I encourage you to take control of your daughter's care and therapy. Ask questions, demand answers, do research (there's a wealth on line but it can be difficult to read if you don't have the background), join a support group, meet regularily with a personal counselor, therapist, chaplain or other clergy. Prayer can be very powerful and therapeutic. Find a stong shoulder to cry on -- there will be times you'll need it.

Good luck, and may God grant your daughter a full recovery!

R.

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L.A.

answers from San Diego on

Hi there ~ I run a non-profit organization for people with cancer and we have had quite a few PH+ ALL children in our program. The prognosis for general ALL is excellent, but the Philadelphia factor does complicate things quite a bit. If you would like to write to me personally, I can let you know our experiences. My email address is [email protected]____.com.

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H.H.

answers from San Diego on

Im am 27, and was diagnosed w/ALL at 25 I am now in remission, and have been for almost 2 years. I didn't have the Philadelphia Chromosome, but if you need to talk, vent, or ask questions I'm here. My Email address is [email protected]____.com My thought are with you & your little girl....may she go into remission quickly & have a speedy recovery from it all!!!

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J.D.

answers from Reno on

I don't have any experience with this, but my heart certainly goes out to you. I'm sorry that you and your child have to go through something so terrible! I hope she gets well soon!

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C.M.

answers from Chicago on

Hello, my name is C. and in may 23 2012 my 3 year old son was diagnosed with all+ph i was wonder if you like to give me same advise my e-mail is [email protected]____.com i hope your daughter is doing well, thanks.

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D.H.

answers from Los Angeles on

i do not hve experience with this particular leukemia, but the leukemia & lymphoma society (www.lls.com-i think) is an amazing resource and gave resources, booklets & most importantly support for our family when going through a family member having lymphoma. take care & God bless

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A.B.

answers from San Diego on

I don't know about your little girl's illness but wanted to say that my heart goes to you in this difficult moment. I wish you the best to both of you. If you need support and someone to talk to, feel free to email. ABe

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M.C.

answers from San Diego on

Hi S.,
Very sorry to hear about your daughter. I don't know what your going through- but wanted to reach out and say hang in there. Depending on what hospital your at you may be assigned a social worker. The social worker can advise you with different non-profit organizations that offer different services while your going through treatments. There are some great groups that you've probably never heard of that offer all kinds of help. Good luck, I wish you and your daughter the best!

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M.S.

answers from Los Angeles on

S.,

I'm sorry, I don't have any experience to share but I wanted to pass on the website for LLS (Leukemia & Lymphoma Society).

http://www.leukemia-lymphoma.org/all_page?item_id=7026&am...

You may be able to find some helpful support there.

I wish your daughter all the best,
M.

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K.E.

answers from Los Angeles on

Hi S.
check out www.mmsmiracle.com. Download the free ebook. Read the book. It starts out about malaria but then goes into cancer. i can't elaborate as i just discovreed it.
All Is Well

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H.F.

answers from Los Angeles on

Hi S.!
I am soooo sorry to hear about your daughter!
I am a single mother as well, and in late november i was hit with the devastating news that my 10 year old daughter ( only child) had A.L.L. Although she did not end up having the p-Chromosone, i believe the treatments are alot alike from what i heard from the Dr.s about it. In the begining the Dr's believed she may have the chromosone, so i was being informed all about it, and what to expect.
It turned out that she had the "typical" type of A.L.L, so we started the necessary chemo, cranial radiation etc.
She is still currently in treatment now.
What hospital is your child being treated at?

Have you already started treatments?

I would be more than happy to share any and all of what know with you, or if you just need someone to talk to, please feel free to contact me!
I can remember feeling so alone, confused, worried devastated etc. It's a terrible thing that no child should ever have to face!

Take Care of your little one, and PLEASE let me know if i can help in any way=]

H.

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D.M.

answers from Los Angeles on

I have not been through this,
but just wanted to send you
and your daughter my prayers.
Good luck to you both!

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M.K.

answers from San Diego on

i don't have any experience with this type of cancer, but my heart and prayers go out to you and your little girl. hang in there and god bless!

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T.M.

answers from Los Angeles on

Hi S.,

I haven't gone thru this personally....but wanted to say I'm sorry for you, your daughter and your family for having to deal with this.

Since building the immune system is of utmost importance right now...and I noticed you are local...you should REALLY go see my herbalist in LaVerne.

He works with the body to first detox, then build the immune system and then get to the various layers of whatever is ailing someone. He's had cancer patients who were 'cast offs' by their doctors...told they were terminal...only to have recovered by his methods.

Whatever avenue you will be going thru with your daughter, either way she would benefit GREATLY by building her immune system right now...especially if chemo or radiation is in her future.

Let me know if you want his info. It'll cost you $25 for the first visit. Getting another option or insight couldn't hurt.

I'll keep you and yours in prayer ...I know this must be a difficult time.

My Mom lived another 7 yrs because of him. After her 3rd heart attack, pneumonia, coma...she left the hospital with them calling her the walking dead. She wasn't supposed to live after that first night. That was in 2000. She left with one artery and 20% heart muscle left. After one year with the herbalist they took her off the heart transplant list.
By 2004 after moving back east to a retirement community..the doctors there told her don't change a thing she was doing...her body had GROWN 40% more veins to her heart to help pump!!!
Sadly, by year 2006, my Mom started to cave to geriatric peer pressure. She stopped taking the necessary detox supplements along with everything he had her taking to keep her system up and running at maximum ability.
Because my Mom was on some heart medications that was necessary at her point after that 3rd heart attack...they also created toxins. The herbalists stuff was keeping her 'filtration systems' clean and filtered.

Within less then 10 months of stopping the herbalists supplements....she passed away 3/07. By the December prior they wanted to remove her gallbladder. By the time of her death her liver had disappeared, eaten up, and she was on kidney dialysis the last 2 weeks of her life. Kidneys were shot. By her last breath...her heart was fine up to then.

I tell you this because my Mom is one in many of stories I could tell you ...from family to friends to acquaintances...all have had unbelievable results for their specific needs. From the simple to the difficult.

Give him a try....I don't think you'll be disappointed. My own story is too long to tell.

But if you have any questions, please don't hesitate to email me.

God Bless....

T.

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R.S.

answers from Los Angeles on

Hi there-

I just wanted to send out extra prayers, positive thoughts and best wishes to you and you daughter. May she have a full recovery and may the Lord give you extra strength when you need it most.
God Bless You Both!
R.

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S.C.

answers from Los Angeles on

S. I am so sorry to hear about your daughter. I dont know of any other advice to give but you have us here on the board as support and please keep us posted! You are in my prayers.

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J.D.

answers from Los Angeles on

Hi there,

I know nothing about this, just want to send you good thoughts,and best of luck!

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M.M.

answers from Seattle on

Hi,
My name is M. and our 4 year old daughter Meena was just diagnosed with ph+ ALL on May 1, 2010. We got to remission at the end of Induction. She was on Vincristine and cytarabine and is on a clinical trial with a drug called dasatnib. If you respond, we can exchange emails. I dont know any other parent who is going through this either. We are from Kentucky and getting treatment at Kosair Childrens Hospital. I hope this finds you and your family and daughter in good health.

Hope to hear from you soon.

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L.B.

answers from San Diego on

Hi S..
I'm so sorry that you and your daughter are going through this. I have never had to deal with this type of cancer either. I just wanted to offer my Prayers for you and your child.
God Bless you both.

L.

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D.N.

answers from Hartford on

i have a son who also was diagnosed with the same as your daughter and he is on the Gleevec protocol, I have found a number of people acorss the US and Canada if you still want to stay in touch please let me know

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