Preparing a 4Yr Old for Chemo

Please send me a mail off the board - i have a friend who you should contact. Her 4-year-old has a rare form of cancer and has been going through this for several years now. Her blog is http://www.princeliamthebrave.blogspot.com/ and she is a fountain of information. I know her experiences can help you.

K., God bless you & your child, and your family for what you are facing. You sound very brave in your post.

We didn't have cancer but very recently we did have to handle a situation where our child became sick. Our middle son was diagnosed type 1 diabetes before he even turned 2 years old. It's never an easy thing when you're facing an illness, and even more difficult when it's a child. NO CHILD should have to live with illness.

I just want you to know you will find strength in you that you didn't know you had, and so will your daughter. I'm pulling for you to get thru this quickly and as easily as possible.

Mom,

Goodness I feel for you, BUT there is a reason the doctors suggest the Chemo, its because of past history with these tumors, AS you know we all learn from past history and experiences. from these past experiences we are able to extablish fact. and Change our approach. While Homeopathic remedies COULD work its not a FACT. it would be experimental.

And if it were my child, I wouldn't want to experiment, I would want to take the tried and true approach.
Just to be sure.

So in my opinion , as horrible as it may seem to subject your child to Chemo which will certainly make her very ill, I think its in her best intrest.

Just my opinion, good luck either way

M

I don't have lots of great advice, but I wanted to say God bless you and your little girl. Thankfully, the doctor feels good about the surgery. What a miracle that is! There are some books on diet for fighting cancer, so you could definitely check those out. Your little sweetie will be on my mind!

Hi K., I am so sorry, I know how hard this time is for yu and your family. My baby girl was also diagnosed with a tumor at 16 months of course we were devestated. She was diagnosed with a rare brain tumor, Medulloblastoma. How do you prepare them for such a horrible thing? I think that being there every single step of the way, holding them, loving them, telling them they are going to be okay and trying to explain it as best as you can is all we can do. My daugher's prognosis was not good at all and the surgeon was very straight with us. He too was able to take out 99% of the tumor and treatment was not promissing at all because of her age. But they were so awesome and we decided to go with a protocol at NYU and worked together with Yale, which was 8 months of aggressive chemo and a stem cell transplant. We are so thankful for her health and she is now a Healthy 6 year old. She remained with a slight balance problem especially when she is sick or tired becasue of the location of the tumor but that is nothing compared to all that we heard that could have been wrong from the doctors. I read your request and just had to write. I hope that my rambling helps. I too ramble when it comes to this subject. But how can you not. It forever changes you. But like I said I just stayed with my daughter and went through every step with her, of course it was very hard and we were in the hospital for most of that year. I thought that the ugliness was never going to stop. But with a lot of support from our friends and family and a lot of prayer and crying we made it. It must be more difficult since you have a another child and younger. I have two other children but it was after the whole tragedy. And like all the doctors told my husband and I, children are so resilient and they truelly are. I hope that everything goes well with Miranda, I will have you and your family in my Prayers. Take care and stay positive. Thank you for sharing your story and I will keep in touch with the website. L.

K., I don't have any wisdom to share - I just wanted to let you know that my thoughts and prayers are with you and your family.

We at The Leukemia & Lymphoma Society offer support groups for caregivers, peer to peer counseling (First Connection) and educational materials. The staff at Miranda's oncologist office should be able to direct you to local resources were you could find support and tools to help you prepare Miranda. We have a coloring book which is not disease specific so I will send you a link and you can print the pdf file for Miranda. If you would like a hard copy or have trouble with the link I would be happy to mail you a book if you provide your address. In the back of the book is a lising of additional web sites for children which may also be of help. Best of luck to you and your family.

http://www.leukemia-lymphoma.org/attachments/National/br_...

Dear K., I have no experience in this area but my heart goes out to you. I will be praying for you and Miranda and your whole family. I will also add your name to a prayer network out of Staten Island, very powerful. Miracles do happen. My best, Grandma Mary

Hi K.,

I am sorry your child has to go through this experience. However, you have to look at the bright side of this situation. The surgeon removed the whole tumor. Now I don't understand why your child has to go through Chemo.

I highly recommend you look into alternative medicine. I have researched for myself and found great results.

Look into alternative medicine and see what they tell you and please do a lot of research.

I pray for you and your family.

Hi K.
I am glad your daughter had a successful surgery. I have been in a similar situtation so I know how you are feeling right now. my daughter was 6.5 months old when she was diagmosed with stage three nueroblastoma. She had a tumor in her neck that had compressed the occular nerves which resulted in Horner's Syndrome. She had surgery and removed 99% of the tumor and a few lymph nodes to be on the safe side. Four weeks after surgery she had a CT scan and the tumor had already started to grow back. She then started chemo. Every three weeks for 8 months she went for treatment. She handled it well as long as she had her zofran(anti-nausea medicine) she did not get sick. Although she didn't lose weight her weight gain was very slow and still is. It was difficult, but we made it through. My daughter has been in remission three years now and is getting ready to start Kindergarten. She did have a second surgery last year because the tumor had been growing slowly but it was benign. This past May she had surgery to repair the droopy eyelid. I am not sure what hospital and doctors you are with but all of my daughter's surgeries and chemo have been at Yale. There are not enough words to express how wonderful everyone is there. She still sees her oncologist every two months for blood work and urine analysis. we used to be there almost every day! Another thing with chemo- expect your daughter to need blodd transfusions. Well, sorry this is so long but I hope my story helps. Please do not hesitate to contact me if you have any questions or just need to vent! I have been there and I know how important it is to have people to talk to. If you haven't been there you don't know what it is like to have a child with cancer.
M.

I have no experience with this but I just wanted to say that I will be praying for Miranda and you and your family as you make decisions and as she is treated for her illness. Blessings-L.

Hi, K., I wanted to let you know that I will be praying for you your daughter and you too. Would you mind if I put her on the prayer chain at my church and have others pray for her too? Please keep me updated during that time if you can and if you need someone to talk to, please feel free and don't think you are a complainer or rumbling on or anything of that sort. I will definitely be praying for all of you as you go through this whole thing. Let me know if you want to keep in touch and I will do so. Jesus is and will always be by your side and her side as you all go through this. He prmised He will never leave you nor forsake you and I know from so many times I could tell He was there with me and my family through difficult times. Jesus loves you and your family :)

I'm sorry to say, I don't know of anything either, but your title caught my eye and heart and wanted to let you know that you will all be in my prayers. Hopefully she will quickly be cancer free for the next 90 years! I can understand your desire for alternative medicines. I don't know of anything in particular - but I realize chemo is so difficult, even if it is the right path. If for nothing else - you have support here and I pray and wish you all the best.

Hi K.:

First and foremost, I am very sorry to hear about your daughter. We will add her to our prayers!

My oldest son has a congenital heart defect and has had to go through 3 open heart surgeries and many other procedures. The best advice I can give to you is to be honest with your child without giving to much information or details. I don't know a lot about Chemo, however I would just breifly explain what she is about to have happen to her and keep reassuring her that you will be right there with her.

Good Luck to you and especially your daughter!

K. Shadek

Hi K.,

I hope your daughter is doing well, and I'm so sorry to hear of any parent faced with this ... See if your hospital has a Child Life Specialist on staff. They are wonderful resources for helping kids and families traverse these critical illnesses from a human standpoint. Best of luck, and warm wishes.

Val

my good friend has a daughter that has been battling neuroblastoma since she was 18 months old...she is now 7 1/2...and has been in remission, THANK GOD, since 2005.

Every 3 months she goes for testing...they alternate between Sloan kettering and Childrens hospital of Phil...Patty loves both places...you're in good hands...

My heartfelt everything goes out to you...especially prayers.

Keep us posted.
J.

Hello K.,
I don't really have any advice for you; just prayers for your daughter and your family as you go through this. My coworker's son also had a rare form of liver cancer and is now cancer free (after surgery and chemo). Here is a link to his website: http://www.caringbridge.org/visit/matthewedwardgandarillas
September is Childhood Cancer Awareness Month, so now is probably the time that you could find the most support and information that you need. I wish you and your family all the best as you go through this tough time.

first of all, i'm sorry your family is having to go thru this. my rule of thumb is to always seek a second, and even third opinion when something as serious as this creates any question marks. although i am all for INTEGRATING alternative approaches into traditional medical treatments, you must, must, must go with the most up to date medical information and treatments. miranda's life could well depend upon these decisions. don't even think about alternative methods as a first-line treatment when dealing with a rare and aggressive form of cancer.

you need to:

1. make sure you understand what her doctor is telling you about his recommendations. ask all questions no matter how basic or unusual they may seem.

2. quickly seek a second and perhaps even third opinion from physicians at teaching hospitals (mount sinai, columbia-cornell, etc., major hospitals that have medical school attached to them) where you will get the most progessive and hopeful treatments.

3. make the chemo decision quickly, after gathering the info. from the second (and third if you do that) opinions.

4. don't turn back. see this decision thru. there is plenty of time to integrate alternative methods into the mainstream treatment.

Good luck, and God Bless.

Hi K.. I am so sorry about your daughter Miranda.. My prayers go out to you and your family. I am sorry That I don't have any info but my prayers..

K., I am sure the Cancer Society has a lot of info on children and chemo. I thank God for the successful surgery and I know htat there is so much info out there.

Not to offend you but konw that love and prayers are with you. Please find a strong support group for yourself. People who can help you cry, let you vent, and lifet you all up in prayers. (oh, and bring cooked meals for you!)

Please keep us posted.You and the family are in my prayers!

I am so sorry that you and your family are going through this. Here I am searching the internet for tips on coping with sending my four year old to kindergarten.I have never been through anything like you are going through so you wont get a "I know how you feel" out of me. (which is the worst thing a person can say)From what you said in your post things sound awesome, no lymphs or other organs affected.
I am in awe of alterenative medicine I want to learn more use it more and think it's wonderful. However if I where in your shoes I would not take any chances with new age stuff. Not with my baby, not unless there was nothing else that could be done. I would pray and pray hard as I am sure you have. Miranda is lucky to have you as a mommy looking out for her and checking out all options. And I am sure you know how lucky you are to have Miranda, what a miracle!

Dear K., my prayers are with you, try to find an alternative meddicine proffessional in your area, it may be worth it. Good Luck to you and your family. God Bless.

Hi K.. My heart goes out to your little girl and your family! I will be praying for little Miranda today and hope that God will lead you in your treatment decisions!!! Of course there is so much controversy about all of that. My uncle was diagnosed in a 4th stage of prostate cancer. He didn't do chemo or radiation and he lived 8 VERY HEALTHY years doing alternative medicine. There were other circumstances in life which we believe led to the cancer eventually taking over (ie. the stress from his job and him working more than 70 hours a week). But my aunt has LOADS of info on this topic. I agree with you that because of the agressiveness of the tumor and time restraints, maybe it is better to just go for what the doctors are offering now. But I want to send you my aunt's e-mail address (i'll send you a private message) and please feel free to contact her. She is very passionate about all of this and knows of many hospitals and clinics which do alternative treatment...if you're interested for the future. On their journey with my uncle they met some other kids and from what I remember a lot of the kids had good results.

Anyway...Thanks for sharing your story with us. Much love to you and your family. Hang in there...I can't imagine how tough this must be, but I know that God can give you the strength, courage and grace you need to get through this. Many blessings.

L. P

K.,

I know personally what your daughter will be going through. Thank God that she has such a supportive family, as that is exactly what will make her bounce back that much faster. It's a lifetime adjustment, but also a new chapter in your lives. Embrace it, accept all the help that comes your way, and I will keep you and your family in my prayers. Speaking from experience, you all will come through this changed with greater blessings that you could ever imagine. Look forward to that and God Bless You. Thank you for the website. I haven't seen it yet, but I look forward to tracking her progress. Take care of yourself, too.

Also, may I recommend Gilda's Club. It's a great support group for anyone touched by cancer. Google them and see if there is one in your area.

Sorry to say I have no advice either - only good thoughts and prayers for you and your family. I'm sure someone here will know of a good support group in the area. Maybe your doctor's office staff does too. I wish you all the best and a full and speedy recovery to Miranda.
Warm regards,
R.

Hi K.,
I am so sorry to hear about your daughter's illness and wish her a full recovery and a long life of good health.
While I haven't had a child who's had cancer, I had breast cancer myself at age 35.
My suggestion is to talk to 2 or 3 oncologists who are not affiliated with each other or the same hospital and ask them about recommended treatment plans. Be sure that you understand how this type of cancer spreads and what your daughter's chances of recurrance or survival would be if you d not opt for chemo.
While I'm a fan of alternative medicine, there are no studies, ZERO that will give you any statistics on recurrance or survival rates from these treatments for cancer. There are no studies, this is an unproven form of medicine. Trust me, I looked into this route. I felt it had nothing to offer me. While there are never any guarantees, I felt that the alternative medicine or homeopathic chemo route would be something I'd enter blindly with no idea of the benefit I would possibly get.
Good luck! And dont' hesitate to turn to The American Cancer Society, they have a lot of information for families, for kids and can refer you to other organizations whose focus is children with cancer and their families.

Prayer is the only answer that I can come up with. God is still on the throne, and can cure your daughter without chemo, as He has already done. I would also get a second opinion as to what is needed. I forgot the name of the Children Hospital ( is it St. Jude) on TV where they do the research to see if there are any meligment cells in the children body at no cost to you. They are God fearing physicians, and has had great outcomes.

i have no real time to relpy but RAW FOOD (veggies and fruits) have been known to reverse all types of cancers in all ages of people for decades. it is a hard thing to think about, getting a kid to want to eat raw food anytime, especially when they are sick and wanting comfort food.... i will reply in two days when i have a lot more time and after i can sort through my resources for you. stay up!! you sound like an incredible mama. much respect, Alex

I don't have any stories to share, but just wanted to send out some well wishes. My heart goes out to you and your family. No 4 year old should have to go through anything like this. I wish her a speedy recovery.

K., wow, what you wrote makes everything else on the page look insignificant. What a nightmare for your family to go through this. I am happy that the surgery went well, and I understand your questions about chemotherapy. I, myself, am not a fan. I don't like what chemo does to the body. It kills all the good along with the bad. I have a very good friend you may want to talk to about other ways to go about this. She is 100% vegan and has done lots and lots of research on alternate ways to help cancer patients. Diet is the # source that can help. She would be more than happy to talk to you about what she knows(or can lead you to where you can learn more). This is just one opinion and many may disagree, but I do think it is worth listening to and researching before you choose chemo.
Whatever you decide, I know you are doing what you feel best for your child, and I wish you all the best through this terrible time.
J.

Dr. Mercola in Chicago Illinois is a wonderful naturopathic dr.