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.

*Resources about other types of leukemia: AML, CLL, CML.

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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.***

Leukemia Survivor	jdchasfaith.blogspot.com	2018
Hope’s Stones	hopesstones.wordpress.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

Google Plus ALL Support Communities

Other ALL Support Groups And Forums

General Leukemia Support Groups

In-Person Support Groups In The United States

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: AML, CLL, CML

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)