April 6, 2017

Acute Lymphoblastic Leukemia (ALL)


Here’s a free collection of resources on Acute Lymphoblastic Leukemia (ALL)- blogs, support groups, first-hand experiences and advice from people who’ve had Acute Lymphocytic (Lymphoblastic) Leukemia, etc.

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Acute Lymphocytic Leukemia Blogs

Here’s a list of Acute Lymphocytic Leukemia blogs.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Hope’s Stones hopesstones.wordpress.com 2017
I Beat Leukemia! jdchasfaith.blogspot.com 2017
Elliott Fights Leukemia elliottblog.com 2017
Katie Grace Kelley katiegracekelley.blogspot.com 2017
A Teaspoon Of Fire myhoffmans.blogspot.com 2016
Molly’s ALL Blog mollyscancerblog.blogspot.com 2016
Emily Whitehead emilywhitehead.com 2016
Serena Bonneville breedingoptimism.blogspot.com 2016
Maddie’s Marathon maddiegorman.wordpress.com 2015
Noah Keck noahkeck.com 2015
Emily Anne Love emilyannelove.wordpress.com 2015
Isa’s Leukemia, Our Lives isarose.wordpress.com 2014
Katie Fights Leukemia katiefightsleukemia.blogspot.com 2014
All About Mollie allaboutmollie.blogspot.com 2014
Ann Gregory anngregory.blogspot.com 2014
Ben Fights Leukemia benfightsleukemia.blogspot.com 2014
Kisses For Cami kissesforcami.com 2014
The Prince Family princehappyfamily.blogspot.com 2014
Flamm Fam bradyandamanda.blogspot.com 2013
Jaylon Fights Leukemia jaylonfong.blogspot.com 2013
Mimi letskickallsbutt.blogspot.com 2013
Natalie and Jake dcapobres.wordpress.com 2013
Where Laughter Lives riggsfamilyblog.com 2013
Sweet Brinley sweetbrinley.com 2013
One Tough Chick mckallsonetoughchick.blogspot.com 2013
Friends Of Tanner tanner.celiamusic.net 2013
ALL For Ally all4ally.blogspot.com 2012
Little Leaps Of Faith littleleaps.wordpress.com 2012
Jenna Beth Thomas ourjennabeth.blogspot.com 2012
Carson Mortensen carsonmortensen.blogspot.com 2012
Super Skyler crystalandskyler.blogspot.com 2012
This Be My Blog carolineb-log.blogspot.com 2012
ViviAnne’s Story viviannegrace.blogspot.com 2011
Koda Woodall kodawoodall.blogspot.com 2011
Life After Leukemia tootandotto.blogspot.com 2011
Love For Livi loveforlivi.blogspot.com 2011
Lili’s Laughs lilislaughs.com 2011
A Voice From Up High lisa5369.blogspot.com 2011
ALL Leukemia Blog thisisaurl.com 2011
Nicholas Shannon nicholasshannonrocks.blogspot.com 2011
The Sudbury Family nsudburyfam.blogspot.com 2011
Hope4Peyton hope4peyton.org 2010
The Grammers grammers.wordpress.com 2010
Chris Boring chrisboring.typepad.com 2010
Chase Villamor chasevillamor.blogspot.com 2010
A.L.L. In The Family fromknechtfollies.blogspot.com 2009
Debutaunt debutaunt.com 2009
Miss Kayla’s Story savekayla.blogspot.com 2009
Surviving Cancer, Surviving Anything survivingcancersurvivinganything.blogspot.com 2009

Acute Lymphocytic Leukemia Support Groups

ALL Support Groups On Facebook

  1. Childhood Acute Lymphoblastic Leukemia Group (1,636 members)
  2. Children with ALL (Leukemia) Group (1,473 members)
  3. A.L.L. (Acute Lymphoblastic Leukemia) ADULT Community Support Group (747 members)
  4. Team Liv’s A.L.L. Stars Group (429 members)
  5. Childhood Leukemia Fundraiser Group (406 members)
  6. ALL/AML Leukemia Survivors Group (221 members)
  7. Leukemia: Helping Find an Answer to Childhood Cancer Group (179 members)
  8. ALL Children (Acute Lymphoblastic Leukemia) Group (159 members)
  9. The Lord’s Battle for Thirdy Against Acute Lymphoblastic Leukemia Group (135 members)
  10. Cure for Childhood Acute Lymphoblastic Leukemia..for Charlee Lou Group (119 members)
  11. ALL/AML LEUKEMIA Support Group (80 members)
  12. Support Childhood Leukemia Group (63 members)
  13. Adult Acute Lymphoblastic Leukemia Group (42 members)
  14. Childhood Leukemia Caregiver Support Group (36 members)
  15. Infant ALL/AML Leukemia Parents Group (34 members)
  16. ALL (Acute Lymphoblastic Leukemia) HOPE Group (32 members)
  17. Fundraising for Childhood Leukemia Group (27 members)
  18. Childhood Leukemia Fund Group (23 members)
  19. Childhood Leukemia Success Stories (19 members)
  20. Childhood Leukemia Awareness Group (18 members)
  21. Acute Lymphocytic Leukemia gofundme.com Group (16 members)
  22. Acute Lymphoblastic Leukemia (ALL) — The Barney Allan Jeffs’s Journey Group (12 members)
  23. A.L.L. (Acute Lymphoblastic Leukemia) with t (4;11) Patients & Support Group (11 members)
  24. Acute Lymphocytic Leukemia Group (11 members)
  25. Support Childhood Leukemia Group (11 members)
  26. Acute Lymphoblastic Leukemia Group (10 members)
  27. “Childhood Leukemia S.O.S. – Stories of Success” Group (5 members)
  28. Acute Lymphocytic Leukemia Survivors 1970+ Group (3 members)

Google Plus ALL Support Communities

  1. Childhood Cancer Advocates Community (403 members)
  2. My Child Has Cancer Community (275 members)
  3. Kids Cancer and It’s Survivors Community (105 members)
  4. Childs Acute Lymphoblastic Leukemia Community (19 members)

Other ALL Support Groups And Forums

  1. Daily Strength Acute Lymphocytic Leukemia (ALL) Support Group (19 members, 204 posts)
  2. Drugs.com Acute Lymphocytic Leukemia Support Group (8 members, 4 questions)
  3. Leukemia & Lymphoma Society Acute Lymphoblastic Leukemia Forum
  4. CancerFocus Acute Lymphoblastic Leukemia Forum
  5. CancerCompass Leukemia (ALL) Discussions
  6. MedHelp Acute Lymphoblastic Leukemia Community
  7. Macmillan Acute Lymphoblastic Leukaemia Forum
  8. CancerConnect Leukemia Community
  9. CancerForums.net Leukemia Forums
  10. Cancer Care Blood Cancers Patient Support Group
  11. HealthBoards Leukemia Message Board
  12. Cancer Research UK Cancer Chat
  13. eHealth Leukemia Forum
  14. MDJunction Leukemias Forums

General Leukemia Support Groups

  1. Leukemia Survivors Group (4,647 members)
  2. Cancer Survivors and Supporters Group (4,384 members)
  3. The Leukemia Foundation Charity Auction Site Group (2,764 members)
  4. FadlCarda Leukemia Foundation Group (1,085 members)
  5. Leukemia & Lymphoma Society-Woman of the Year Campaign Fundraiser Group (527 members)
  6. Leukemia & Lymphoma Society of Canada (Westisle Fund Raiser) Group (454 members)
  7. Leukemia & Lymphoma Society Team in Training Group (398 members)
  8. Leukemia & Lymphoma Society and TNT: Triathlon!! (393 members)
  9. The Leukemia & Lymphoma Society, Lehigh Valley Branch/EPA Group (327 members)
  10. Infant Leukemia Support Group (311 members)
  11. Leukemia & Lymphoma Society, Tri-State Chapter Group (299 members)
  12. Leukemia Support Group – Philippines CML, ALL, AML, etc. Group (261 members)
  13. Leukemia Survivors Google Plus Community (189 members)
  14. Leukemia Relief FB Group (182 members)
  15. Help Fight Leukemia Cancer Group (152 members)
  16. Friends Who Like The Leukemia & Lymphoma Society – OCIE Chapter Group (138 members)
  17. Leukemia Awareness Group (123 members)
  18. No One Fights Alone – Leukemia Awareness Group (111 members)
  19. Fighting Leukemia Group (99 members)
  20. Cancer Support Group/Leukemia Support Group (97 members)
  21. Beat Leukemia! Group (89 members)
  22. Leukemia Support/Love Google Plus Community (73 members)
  23. Leukemia/Lymphoma Group (70 members)
  24. We help fight leukemia! Group (61 members)
  25. Leukemia and Lymphoma Awareness Club Group (59 members)
  26. Guardians of Leukemia Fighting Angels Google Plus Community (52 members)
  27. Leukaemia & Transplants UK Google Plus Community (23 members)
  28. Cancer & Leukemia Center Friends Group (9 members)

In-Person Support Groups In The United States

  1. Leukemia & Lymphoma Society Support Groups (Click link to see if there are any local meet-ups, fundraiser events, etc.)
  2. Cancer Support Communities

Acute Lymphocytic Leukemia Survey

We’re surveying people about their experiences with Acute Lymphocytic Leukemia. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Acute Lymphocytic Leukemia**

Free resources on other types of Leukemia: AMLCLLCML


Acute Lymphocytic Leukemia Subtypes

Leukemia subtype/stage:

  • Pre B. (Hero, diagnosed at age 2)
  • Pre B. (Graeme, diagnosed at age 2)
  • Long term follow up. (Lucas, diagnosed at age 2.5)
  • Standard risk Pre B. (Girl, diagnosed at age 3)
  • B. (Matteo, diagnosed at age 3)
  • Pre-B ALL Standard Risk. (Sebastian, diagnosed at age 3)
  • Stage 2. (Christopher, diagnosed at age 4)
  • Pre B. (Alper, diagnosed at age 5)
  • Pre-B cell. (Daughter, diagnosed at age 5)
  • MPAL/T-Cell ALL and T- Myeloid. (Dylan, diagnosed at age 13)

Acute Lymphocytic Leukemia Genetic Mutations

Genetic mutations found:

  • Runx. (Graeme, diagnosed at age 2)
  • TEL AML1. (Girl, diagnosed at age 3)
  • None. (Sebastian, diagnosed at age 3)
  • No. (Christopher, diagnosed at age 4)
  • T9, 22 positive. (Alper, diagnosed at age 5)
  • None. (Daughter, diagnosed at age 5)

Acute Lymphocytic Leukemia Risk Levels

Were you (or your loved one) considered low, moderate or high risk?

  • Moderate risk. (Hero, diagnosed at age 2)
  • Moderate risk. (Graeme, diagnosed at age 2)
  • Low risk. (Lucas, diagnosed at age 2.5)
  • Low risk. (Girl, diagnosed at age 3)
  • Moderate risk. (Matteo, diagnosed at age 3)
  • Moderate risk. (Sebastian, diagnosed at age 3)
  • High risk. (Christopher, diagnosed at age 4)
  • High risk. (Alper, diagnosed at age 5)
  • Moderate risk. (Daughter, diagnosed at age 5)
  • Moderate risk. (Holly, diagnosed at age 6)
  • High risk. (Alyssa, diagnosed at age 10)
  • Moderate risk. (Dylan, diagnosed at age 13)
  • Low risk. (Male)

Acute Lymphocytic Leukemia Symptoms

What ALL symptoms have you (or your loved one) experienced?

  • (1) at diagnosis — high fever, increasing lifelessness (2) during treatment–chemo’s side effects (3) after treatment — a good life! (Hero, diagnosed at age 2)
  • Bone pain. (Graeme, diagnosed at age 2)
  • Paleness, fatigue, fevers. (Lucas, diagnosed at age 2.5)
  • Pale skin, slight bruising, lethargic, low grade unexplained fever. (Girl, diagnosed at age 3)
  • Fevers for a month abs complained of muscle ache in the leg. (Matteo, diagnosed at age 3)
  • Flu-like symptoms for about a week, then slipped into a coma for about 9 weeks. (Christopher, diagnosed at age 4)
  • Liver toxicity, pains, ICU stays, Anaflactoid Schocks, etc.. (Alper, diagnosed at age 5)
  • Prior to diagnosis: fatigue, fevers, some joint pain; during treatment: nausea, fatigue, hair loss, lack of stamina. (Daughter, diagnosed at age 5)
  • Sore legs, cough that won’t go away, pale, tired, sore on lip that wouldn’t heal. (Holly, diagnosed at age 6)
  • Low grade fevers, constant bone pain, paleness, shortness of breath. (Alyssa, diagnosed at age 10)
  • Rash, high blood pressure, fatigue, nausea, blood clot, fever, cramps in legs, legs twitching, headaches, vomiting, some hair loss. (Dylan, diagnosed at age 13)

Acute Lymphocytic Leukemia Causes

Is there anything you believe contributed to your (or your loved one’s) ALL?

  • No. (Hero, diagnosed at age 2)
  • Poor diet. (Matteo, diagnosed at age 3)
  • No. I just got chosen as its prey I guess. (Christopher, diagnosed at age 4)
  • No. (Daughter, diagnosed at age 5)
  • My daughter had many food allergies & irritable bowels for most of her life before diagnosis. Although she craved healthy foods & ate well, I think her body was malnourished & unable to absorb all the nutrients she required, as a result it wasn’t in optimal condition to prevent the cancer from developing. (Holly, diagnosed at age 6)
  • No. (Alyssa, diagnosed at age 10)
  • No. (Dylan, diagnosed at age 13)
  • Not knowing how much poison we feed our kids. The water and air is killing them too. (Male)

Acute Lymphocytic Leukemia Interesting Facts

What are some interesting facts you’ve learned about ALL?

  • Treatments are improving, but need to improve much, much more. (Hero, diagnosed at age 2)
  • How many children are affected. (Matteo, diagnosed at age 3)
  • It is a life changer for sure! It is a horrible disease to have that not only tears your body up, but emotionally scars you forever! (Christopher, diagnosed at age 4)
  • Vitamin D level (in all of patients Vitamin D level is too low), Genetical tests by CNF. (Alper, diagnosed at age 5)
  • Primarily, that there is no known cause. (Daughter, diagnosed at age 5)
  • Every person’s body is different and will go through treatment differently. There’s lots to be learned from other people, but that doesn’t mean that’s how it will be for you. (Holly, diagnosed at age 6)
  • Blood is very interesting. (Alyssa, diagnosed at age 10)
  • There are many different types. But it has been hard to find others with the same type of leukemia. Maybe because it’s rare. I really wish there was more information about the type of leukemia my son has. (Dylan, diagnosed at age 13)
  • Leukemia always comes back. (Male)

Acute Lymphocytic Leukemia Pain Relief

What are effective ways to relieve your (or your loved one’s) ALL-related pain?

  • We’re thankful for the medications (like anti-nausea meds) that the hospital could offer. (Hero, diagnosed at age 2)
  • Love, compassion and understanding. (Lucas, diagnosed at age 2.5)
  • Just give them what they need, of course within reason. (Matteo, diagnosed at age 3)
  • I only take medication for my Anxiety Disorder. I was hooked on pain killers for 12 years and hated every moment. Don’t go down this road if you can avoid it. (Christopher, diagnosed at age 4)
  • Drinking more water, DoTerra topical pain relief essential oils, having bath and massage. (Alper, diagnosed at age 5)
  • Play therapy and distraction, and also massage (and medication). (Holly, diagnosed at age 6)
  • Mind over matter, all natural oils. (Alyssa, diagnosed at age 10)
  • Pain meds. (Dylan, diagnosed at age 13)

Acute Lymphocytic Leukemia Difficulties

What are the most difficult aspects of living with ALL?

  • Managing risks, fearing relapse. (Hero, diagnosed at age 2)
  • Fear. (Graeme, diagnosed at age 2)
  • As the parent, watching your child go through treatments, procedures and taking chemo. (Lucas, diagnosed at age 2.5)
  • As a parent, seeing your child go through so much. (Matteo, diagnosed at age 3)
  • I have been in remission for 26 years and still do not feel like I have had or will ever have quality of life! (Christopher, diagnosed at age 4)
  • During initial treatment, maintaining normalcy for sibling, family. Disruptions to schedule during initial phase of treatment, when visits/hospitalizations are most frequent. (Daughter, diagnosed at age 5)
  • The isolation, worry, fear, loss of strength and loss of ability to walk, the Unknown future, loss of childhood, difficulty sleeping, struggle to take medication, pain from chemo side effects. Seeing children die and families struggle around you. (Holly, diagnosed at age 6)
  • Low immune system, avoiding crowds and germs in cold and flu season. (Alyssa, diagnosed at age 10)
  • Not being able to do the things you use to do. (Dylan, diagnosed at age 13)
  • People not understanding, his friends stop calling, stop coming around. (Male)

Acute Lymphocytic Leukemia Advice

What words of advice/encouragement could you give someone recently diagnosed with ALL?

  • Accept the fact that some of your friends will let you down — don’t let bitterness invade your sadness. Keep an eye out for support that comes from unexpected sources. (Hero, diagnosed at age 2)
  • Hugs. (Graeme, diagnosed at age 2)
  • Have faith, don’t give up. (Gina, diagnosed at age 2)
  • You’re going to kick leukaemia in the butt. (Matteo, diagnosed at age 3)
  • POWER OF PRAYER! Hold on tight because this roller coaster is very horrifying and very unforgiving at times. (Christopher, diagnosed at age 4)
  • It gets better. (Daughter, diagnosed at age 5)
  • Some days you feel good , some days you feel bad. (Alyssa, diagnosed at age 10)
  • Stay strong. (Dylan, diagnosed at age 13)
  • Never stop believing, but never forget what your feelings are saying to you. (Male)

Acute Lymphocytic Leukemia Recommendations

Anything you would recommend for someone with ALL?

  • (1) Accept the fact that some of your friends will let you down — don’t let bitterness invade your sadness. (2) Keep an eye out for support that comes from unexpected sources. (3) Realize that grief is a part of your process — even if treatment is successful and you or your loved one recover, grieving the losses that are a part of your journey is important. Time does NOT heal all wounds. You need to talk it out and let yourself experience the emotions that come. (Hero, diagnosed at age 2)
  • Trust in God and your doctors. (Lucas, diagnosed at age 2.5)
  • Be STRONG, Be BRAVE, & NEVER Give Up! (Christopher, diagnosed at age 4)
  • Participate in a research study, if possible; stay on top of treatment protocols. Remember that — as you research the disease, and look at others’ experiences — no two cases are the same. (Daughter, diagnosed at age 5)
  • Ask questions, make the most of the precious moments. Amongst the fear & chose there are many previous memories to enjoy – savor every one! Try to understand & know the treatment & check names on medication, doses, blood etc, as doctors & nurses are human & humans can make mistakes. Don’t be afraid to ask ‘what’s that?’, ‘what does it do?’, ‘what are the options?’, mention every little concern to the staff, each little thing you notice can be something of significance & you want the best possible care with minimal discomfort. If you’ve come to the stage where there are no further options, keep asking & searching for alternative trials & treatments… although you may feel alone, please know there are many people on your side wanting what’s best for you. (Holly, diagnosed at age 6)
  • Take one day at a time. (Alyssa, diagnosed at age 10)
  • Look at all treatments there are and what doctors and hospitals are the best. Don’t go by what you hear- meet the doctors and hospitals just not once- but a lot of talk to the nurses. Do what you feel is right. (Male)

Acute Lymphocytic Leukemia Remission and Relapse

What’s your (or your loved one’s) history of remission and relapse?

  • Remission came quickly — no relapse. We thank God and all those who have contributed to medical research over the last 40-50 years. (Hero, diagnosed at age 2)
  • Went into remission at 11. (Gina, diagnosed at age 2)
  • In remission for 6+ years. (Lucas, diagnosed at age 2.5)
  • Diagnosed at age 4, out of remission at age 7 and 12. Been in remission since age 14 and I am 41 now. (Christopher, diagnosed at age 4)
  • First Dx. (Alper, diagnosed at age 5)
  • Remission occurred on schedule, at end of induction; we have no history of relapse. (Daughter, diagnosed at age 5)
  • Recently completed treatment & in full remission for 2 months. (Holly, diagnosed at age 6)
  • Remission for 20 months now. (Alyssa, diagnosed at age 10)
  • He went into remission right after the induction phase of chemotherapy. (Dylan, diagnosed at age 13)
  • 2003, 2016, about every other year. (Male)

Acute Lymphocytic Leukemia Treatments

What’s been your experience with treatments (chemotherapy, transplants, etc.)?

  • Chemo has worked! (Hero, diagnosed at age 2)
  • Three months into chemo. (Graeme, diagnosed at age 2)
  • Chemotherapy for 5 years. (Gina, diagnosed at age 2)
  • Overall it was fine, no long-term side effects. (Lucas, diagnosed at age 2.5)
  • My child seems to be managing with the Lumbar puncture. (Matteo, diagnosed at age 3)
  • Chemo, radiation, 2 B.M. transplants, & 3 blood transfusions. (Christopher, diagnosed at age 4)
  • Every patient will respond differently to the chemo agents, in terms of side effects. (Daughter, diagnosed at age 5)
  • Two years chemotherapy. (Holly, diagnosed at age 6)
  • Some good, some rare side effects. (Alyssa, diagnosed at age 10)
  • They all suck. You never know what side effect you’re going to get. At this time he doesn’t need a bone marrow transplant. (Dylan, diagnosed at age 13)
  • Treatments kept him alive- he’s sick most of the time- so you answer that. (Male)

Acute Lymphocytic Leukemia Resources

What specific ALL resources have you found most helpful?

  • Friends’ prayers, good doctors. (Hero, diagnosed at age 2)
  • Our care providers and research. (Graeme, diagnosed at age 2)
  • LLS. (Lucas, diagnosed at age 2.5)
  • Social media, i.e. Facebook groups. (Matteo, diagnosed at age 3)
  • Other survivors just like me, getting involved in helping & giving support to those who are fighting any type of childhood cancer now! (Christopher, diagnosed at age 4)
  • Facebook. (Alper, diagnosed at age 5)
  • Child life employees at hospital; counselors there, to a limited extent/when available; neighbors and family. (Daughter, diagnosed at age 5)
  • The play, music & distraction therapy (clown doctors, camp quality puppets, starlight captains). The counseling service from the Childhood Cancer Association, the kindness & understanding from the doctors & staff. (Holly, diagnosed at age 6)
  • I really haven’t found anything specific, so nothing has helped except from the doctor. (Dylan, diagnosed at age 13)