Seeking Mom's with Advice on Luekemia, My 10 Yr. Old Was Just Diagnosed.....

Don't get chemo or radiation. It doesn't work. It only makes the cancer worse, trust me on this. My mom had cancer my whole life and was in and out of hospitals. She was very sick, suffered all the time and died a very painful and horrible death.

My son is a cancer suvivor at only 3.5 years old.

I invite you to come see his website at
http://huntersfirsthunt.tripod.com

He didn't have luekemia. He had a cancerous brain tumor which was removed by craniotomy, he had surgery to put a Hickman IV in his chest, he underwent 6 months of Intensive Chemotherapy, and he had surgery to put in a G-tube because of the severe nausia.

When we were at Doernbecher Children's Hospital, we met children and families who where going through treatment for luekemia. From what I learned, the treatment can last up to 3 years and the kind of chemo can be more or less intense. For some luekemia patients, the chemo is mild and the child doesn't get as sick from it. They can actually become healthier the instant the chemo starts and they can maintain a fairly normal school and social life. But the more intense the chemo, the worst the side effects are. Children that recieve the more intense chemos can be "down" and hospitalized for long periods of time, have no energy, get very sick from no immune system, infections, etc... and consequently need bone marrow transplants and such.

My only experience is with the Intense Chemo that is so strong that it was made to break the blood barrier of the brain. That kind of chemo is not necessary for luekemia, but still a lot of the side effect are the same.

Based on my experience, here are the basics:

-there is absolutely no way that I could have maintained a job.

You are a single mom? But, in a case like this.... will Dad step it up? If you are single because of divorce (not because he's died), will he press into her life and take care of the both of you? He will need to support you entirely so that you can be at her bedside and support her. You are an advocate for her life and need to be there for -everything-. I hope that he is the kind of Dad that can set any resentment aside that he has for you... and just give his daughter his best -which is her mother.

Bills? We almost lost our house... but, believe me... I really didn't care. Losing the job, the house, nothing mattered because the one thing I wasn't going to loose is my son's life.

There is a little bit of financial help out there. The hospital staff should be able to direct you to a case worker who can help you get signed up for social security, extra food money (so that you can put your money toward the bills), gas/mileage reibursment, special donation offers/scholarships, etc. And just remember that if you loose everything... even health insurance because the job and wages plummet... there's always the State Health Plans that have to accept you and they pay 100% with no co pay.

We didn't qualify for the State Health Plan for the first couple of months... and in that time our co-pay raked up to over $100,000.00 dollars. Needless to say, we filed bankrupcy after the entire ordeal was over with. And it wasn't the worst thing in the world... Actually quite a relief.

My best financial advice is that now is the time to be humble and be the receiver of all the help you can get. Maybe, even your Harley Davidson shop can hold a fund raiser for you. You'll need it for gas money, fast food on the go, etc...

- And the next thing would be that along with the financial world going upside down (for most folks), the lifestyle of just peaceful living goes right out the window too. My days turned from patti-cake to blood transfusions every couple of days and multiple transfusions within the same day, checking for fevers, pain, and dehydration.

While in the hospital the nurses prepare and dispense the meds 24/7. But, at home during the "good times" the mother (or care giver) prepares and dispenses meds when they are due 24/7. Expect your days and nights to start blending together... like a newborn, nap when she naps...

It really was a challenge to be lacking sleep and yet have to change and wash the bed sheets several times a day and night because of the nausia, clean the carpets from vomits, and the couches... and then also dispense G-tube feeds, give medicines on time, give shots in the legs every evening, clean and sanitize the tubes and wires hanging from his chest and belly, clean up the diahrea every day, and make it to the hospital for blood transfusions. Just to do it all over again the next day... as I watched him fade and waste away to the brink of death because his blood wasn't holding up and his nurition was spilling out from the nausia, vomiting, and diareah... and then they would finally admit us back in for intrevenous nutrition, meds, antibiotics, and more transfusions. No more patti-cake, only blood counts and how many mls of formula we got into his belly.

This is why you are going to need some serious support. You might not even spend much time at home for the next couple of years. If you don't have a room-mate already, it might be an option to help with the finances and for a house-sitter. It would also be nice to have someone living in, to be a help with things like restocking on groceries when you come home again because she might have such a poor immune system that she can not go out in the germs yet, you can't leave her side because she is so sick, scared, and needy. And just all around help would be great anyways...

Well, my baby girl just woke up. I have to cut myself off here.

All I can leave you with is that fighting cancer can be very overwhelming. More than we can handle alone, more than we can bare. Life DOES give us more than we can handle.

My father asked me, "How did you do it, Y.? How did you endure it all?" And all I could tell him was that it wasn't in my own strength... God sustained me and Hunter. Miracles took place not just in the fact that he's cancer free now.... but, in the small daily provisions...

Hello,
My niece was diagnosed with leukemia...twice. She's now in remission but I was wondering if you would like the e-mail address of my sister-in-law. Not only did she go through it but she is also a nurse. Please let me know.

I would contact the luekemia society and ask them for all the help and resources they are there to help. I would let you ex take you to court and show up when you have dates and document it all and how it has caused a HUGE stress on yourself and also Holly during this time. The judge will not be cold hearted. I would document everything he says and when he visits and does nto visit to show he is in consistent. If he wants to battle then just do it silently and if you can not afford an atty cal the state and get them to help you. keep posting here as well someone will know something. Your ex may be acting out of fear and does nto know how to re act none the less Holly needs all the support and love she can get right now. Keep track of dates and times. I will keep you in our prayers and put you and your fmaily in our prayers at church as well. I am so sorry this is happening. Please keep focus on Holly and her getting better everything else can wait. Call everyone about luekemia.see what advice you can get there first.

Let me know
T.

Hello, I'm a young mother,I will admit I don't know much about parenting yet, I wanted to comment on your topic cause it kind of hits close to home for me because my grandfather died from leukemia. You can go to a web site called webMD.com and type in your topic of interest and it will give you a lot of information on whatever your looking for I went there and looked up Leukemia and here's what it said:~
***Leukemia is cancer of the blood cells. Blood cells are made by your bone marrow, which is the soft tissue in the middle of most bones. In leukemia, the bone marrow starts making too many white blood cells, and sometimes these cells don't work right. These cells keep growing when they are supposed to stop. They also grow faster than your other cells. Over time, these abnormal cells crowd out your normal white blood cells, red blood cells, and platelets.

Your white blood cells help your body fight infection. Your red blood cells make sure all your body parts have the oxygen they need. Your platelets keep you from bleeding too much. When the leukemia cells crowd out your normal cells, your blood cannot do its job. You may bleed or bruise easily, get sick more often, and feel very tired.***

I encourage you to go and find out more. I hope you found my comment helpful. I will be praying for your little girl. she will be in my thoughts.

C.

I have a 10 year old daughter who was diagnosed with cancer several years ago.
It looks like you are at a good hospital. Just take care of yourself. Try to keep your daughter (and yourself) laughing. I know this seems crazy now, but you will be tired and emotionally exhausted, and dealing with all kinds of people who are just "doing their job" in treating your daughter. You'll have to laugh.
I saw some good advice posted already.
And know that every single person who reads your message is going to send good thoughts to you and your daughter.
There are a lots of medicines available now to make chemo and radiation more comfortable. It will still suck, but make sure you find out about everything.
I have been dealing with pediatric cancer for 8 years, and still do even today. Please email me if you need any help.

Hi.. my name is J. and my daughter, Kelli who is also 10, was just diagnosed with A.L.L. with the philadelphia chromosome. Its a type of leukemia. Very difficult to treat and we have to have a bone marrow transplant. I can try to answer any questions you may have that I know the answers to. We are in Washington State. I know where you are and its a very scary place to be. Feel free to contact me off this on yahoo as musicalmomofone or via email ____@____.com would be nice to talk to someone with a child who is the same age going through what we are going through.

HI H... I just signed up for this forum and reading a few things. I hope it' okay to ask, by your posting it looks like it's been about a year since this posting- How is your daughter doing now? Is she okay? I went through this 12 yrs. ago. My daughter was diagnosed when she was 3 yrs. old- Christmas night 1995. I really wished I had read this last year- as I had dealt with this too. Anyway, just thought I'd check in.
A.

I really dont know much about it but my cousin was diagonsed almost three years ago and she is already in remission. My aunt went through a lot during that time. I will keep you and your daughter in my prayers. My cousin is now a healthy 6 year old.

Hi H.,
My brother was diagosed with AML Luekemia at age 14. This was back in 1981, he was at Childrens Orthopedic Hospital in Seattle. He went throught chemo, radiation and a bone marrow transplant in which my other brother was the doner. It was a long hard process for all of us. My mom stayed in the hospital with him everyday through out his entire stay which was well over 6 months. You are in for a bumpy road with many ups and downs, but the important thing to is to try your best to get all the information you can, stay positive and make sure she is involved in all the treatment/decisions. There were times my parents tried to make it seem not so bad when explaining things to my brother (and us kids), but deep down we all knew they were hiding things and it was hard and made it scarier. And since this will be a confusing time for her anyway, education and frankness for you both is so important. I could probably go on and on as I remember it all like it was yesterday, but I just wanted to take a minute and respond to you and let you know I will put you and your daughter in my prayers and please feel free to email me anytime if you ever want to talk, vent, cry or anything. I could also hook you up with my mom, she really became very knowledgable throughout this ordeal and she is an amazingly strong woman who could probably answer many questions as well.
Good Bless and please keep us informed on Holly's progress!
S.

While I don't have any info I would like to offer my support. The most important thing you have to remember is to be proactive. Learn as much as you can about the type of leukemia she has and don't ever hesitate to question treatment, protocol or anything at all. Trust that your little girl is in good hands at a great hospital but never doubt that you know your little girl best and you are her voice. ((hugs)) if you need someone to talk to I am here. This is going to be a long, hard fight but be strong and think as positive as you can.

im sorry I dont have any expereince with this but I want you to know that you and your little girl are im our hearts and prayers.

H.,
I totally understand what you are going thru, my boyfriend of seven years had leukemia also 4 years ago, he is fine now and has a completely normal life, he works, plays, party, drinks and eat as any other person.
My best advise is to listen to your doctor, today's medicine has advanced a lot, and the procedures are not as invasive as before.
Be strong, your girl is young and has the stenght to overcome this, she needs you there, do not get sad, and do not worry a lot, just keep her happy, talk about different things and make plans for the future, she will be ok.
If you need to talk you can call me at ###-###-#### and I will explain my experience with more detail.
The doctor that treated Luis, works at National Institute of Health in Virginia, his name is John Barrett, he was very good, so if you want another opinion believe me you can trust this guy.

Oh H., I'm sorry. You may have had several responses already. My son age 8 was diagnosed in August 2007 with preB ALL at Childrens in San Diego. I felt totally out of control. I read everything I could get my hands on. But as time went on, it got easier and he is now in remission. He still goes in all the time and takes a lot of meds but he is back in school and doing good. There is a lot of hope. The doctors know so much now that you just have to have faith and if youre worried trust your gut. My advice to you though that I wish someone had told me at the start, get your daughter in regularly with a psychologist thru the hospital. I knew my son had quite a burden but did not realize the toll it took on him emotionally until more recently. Also, do not isolate your child because of the germs. If you are cautious with masks or purel, your daughter needs to keep all of her relationships with friends from neighborhood, church and school. Another thing, don't force her to "be normal". I see parents doing this at the hospital all the time and I see the looks on the kids faces. They want to be normal but they are sick. They need extra cuddling and extra time for everything because they hurt all over. Please contact me anytime if you want talk, its hard to talk with your regular friends sometimes about it, I know. I wish you best of luck!!!!

Hi H.,

I know when I went though the cancer treatment with my mother, the biggest thing is attitude. I know how scared you are and that this is so unfair for a child to have to go through. But you have to be the strong one. It will work out and everything will be ok. The advances in medicine are amazing.

If you need a nutritionist let me know I would be happy to donate my services to you and your daughter.

My prayers and best wishes go out to both of you and hang in there. This is a tough fight. My mother is a 20 year survivor. It can happen in you will it too.

L. C
Personal Nutritionist
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Hi H.,
First I want you to take a deep breath and know that this diagnosis is not a death sentence. My brother was diagnosed with leukemia when he was 4 years old. He will turn 29 on April 3rd.
You have a tough road ahead of you, but the one thingI can't stress enough is that you need to keep a positive attitude for your daughter's sake. She can beat this, she WILL beat this. Hang positive message posters in her hospital room, and in her room at home. Tell all visitors to stay upbeat (without being fake-kids hate that), and ask at the hospital for names/numbers of support groups in your area. You will need them, and so will she. Find out if there's a kid's camp or something similar in the area. That saved my and my brother's sanity when we were kids-gettingto be around other sick kids and their siblings, having fun and celebrating life.
I'm sure you already do, but tell her each and every day that you love her and what a blessing she is to you. And make sure she knows that God IS NOT punishing her.
Make sure you find at least 10 minutes for yourself each day, and don't forget to eat. You may not want to, but you need your strength and so does she.
I'm here if you need me.
Blessings,
K.

H.,
I cannot imagine what you are going through, and I will keep you and your daughter in my prayers! I am not in a similar situation, but I know the first thing I would do is research the diagnosis. I would find every article, book, website, etc. that I could find so when the doctors were giving me my options or discussing procedures and treatments I would be fully informed and understand what they were talking about. By doing this you could probably find some valuable information as to the best treatments, doctors, etc. so you have an informed opinion in her treatment. After all you are her mother, and have her best interests at heart. Sometimes the doctors keep themselves removed from the patient so they can do your job. I am not trying to scare you, but when I was pregnant with my first daughter we had complications, and I did just what I am suggesting to you. I ended up making a decision that could have resulted in a miscarriage for a procedure that was not needed in my case. Good luck and God Bless!