Here is an online support that a friend of mine in Kansas used when her grandchild was born with multiple life threatening conditions and had several heart surgeries. it's www.caringbridge.org it's completely free and allows you to set up a personlized website to connect family and friends and keep them updated. with the distance i still felt informed and didn't feel like i was intruding on their privacy or sleep by calling. if you don't have the time to set this up perhaps a friend could and that could be their gift to you.
by the number of responses, we are all thinking and praying for you. i hope you have family close by to help with both children so you have time to yourself and with the older one. you are a brave young woman, especially to acknowledge that you cannot handle this alone. please contact caring bridge, i think it will help and put it another request here in a week and see if you connect with a parent with child having cancer. I know Ronald McDonald House is wonderful and i'm sure they must have outreach support. blessings to you and your family.
My prayers will be with you and your baby.
Can't imagine what you are going through.
It really is hearbreaking.
Be strong and hold that baby until your arms go numb.
I'm so sorry, Reyna, I'll be thinking about you...
Hi Reyna, first of all, I am so sorry!!! My prayers are with you and family.
I have a friend in my bookclub who, Christmas Day 2007, her 6 year old was diagnosed with neuroblastoma on her liver. She also has another child, they are older than yours, but just the same! I can get you her information if you would like? Her daughter has just finished a year of treatment, and transplants, and is on the road to recovery!! All her restrictions have been lifted, and she hopes to return to school in the spring. Let me know, I'm sure she would love to talk to you. Also, they used the Caringbridge website to keep everyone updated.
you can email me back at [email protected] if you would like my friends info.
Take Care!
Reyna- I'm so sorry to hear this. My thoughts are with you. Please be strong for your daughter. She needs that most!
Did you happen to store your daughter's cord blood? There have been so many studies and trials done on cord blood stem cells and cancer.
Good luck to you and your family.
Reyna-my heart goes out to you. if you go to the site www.stbaldricks.org you can begin to connect with some moms in your area, i'm sure. i have been doing fundraising with this organization for the past 5 years and have met some very courageous moms, dads, and children here in Sacramento. Keep praying and keep believing.
shannon
Hi there,
I am not sure this is exactly what you are looking for, although it could be a very good resource for you. The Keaton Rafael Memorial (www.childcancer.org). There are a few families in the Greater Sacramento area that are going through or have gone through what you are going through, and KRM can help you with that as well as Dr./ Medical information.
My Prayers and thoughts are with you and your family,
Carolyn Oliveira
Speak with the social worker, case manager and your daughter's treating hysician, they have connections. Also the Parents Helping Parents is an excellant resource.
Sweet Reyna,
You are never alone. There is one who is near you, who will never leave or forsake you. Please allow me to pray for you.
Father God, in a world where we can't see your face or feel your touch, sometimes it's easy to be filled with fear. But Lord you ask us to not fear anything, but to have a spirit of peace, because you have overcome the world. You are our refuge and our strength, a very present help in times of trouble. You are holy, and you are worthy. Lord thank you that faith is a gift you will give this family as they put their hope in you. I ask lord, for you to put a hedge of protection around this family. Lord bring this family wisdom, courage and strength. Clothe them with your peace Lord, for you shall strengthen their hearts. You will make their feet like the feet of a deer, enabling them to stand on the hieghts. You will be their rock, and their fortress, their God in whom they trust. Oh God, we ask in the name of Jesus that this child be healed. And Lord, we ask that this child, and everyone who comes into contact with this child, have their names written in the Book of Life. Thank you Jesus that you answer every prayer given in faith. For it is by faith that we are healed.
Amen.
"Then thou shall call and the Lord shall answer,thou shall cry and he shall say, Here I am" Isaiah 58:9
Dear Reyna: I know a great deal about neuroblastoma. My son was diagnosed with this cancer at the age of 10. I also know many other parents who have dealt with this cancer. Dustin's tumor was above the adreneal gland on the left side. I am a member of children's hospice and pallative care in Watsonville. I was a board member for 5 years and am now a member only. Their website is www.childrenshospice.org I have much information that could help you and I have a great ear. Please let me know if you are interested in contacting me. The two things to remember is one day at a time and you have to take care of yourself in order to take care of your daughter.
My blessings are with you and your baby girl.
Love, Gina
One of my co-workers 5 year old son was diagonsed with neuroblastoma and has gone thru chemo and stem cell transplant with Sutter in Sacramento. I would love to put you in contact with her if you are in the Sacramento area.
He Reyna,
My prayers and thoughts are with you in this time. I have not had a child dignosed with cancer but have lost my father in law to it 7yrs ago. The following website is for hospice, www.hospiceeastbay.org, please keep in mind that they are there to help you and answer any questions you may have. Best of luck to you and your family as you strive to get through this.
Dear Reyna, Please call me.
916 944 4675 Alla B.
Hi, I am so sorry to hear about your daughter's diagnosis. I am actually a child life specialist in the pediatric oncology unit at Kaiser Hospital. There are many organizations out there to provide support, and you will be given that information at the facility you are being treated at. A great website is www.curesearch.org. You can also do a webpage to keep family and friends updated. This helps you to not be glued to the phone all day and to not have to keep repeating the same information all the time. I would recommend using either www.carepages.com or www.caringbridge.com. The Keaton Raphael Memorial foundation also has good resources for families. Their website is www.childcancer.org. If you have other children (4-18), make sure you sign them up with Super Sibs (an organization that provides support to siblings of children with cancer). Their website is www.supersibs.org. Please feel free to contact me with further questions at [email protected]. Good luck to you all!
Hi Reyna,
I am really sorry to hear about your precious daughter. I can only imagine what you are going through. I do not have any frame of reference, but I volunteer as a photographer for a company called the Littlest Heroes Project. http://www.littlestheroesproject.org/Littlest_Heroes_Project/Home.html You may be able to ask them if you can contact any of the members because a lot of them have different kinds of Neuroblastoma. My thoughts and prayers are with you. I would love to hear any updates, please don't hesitate to send me a message. Thanks
Nicole
Sorry I am just seeing this. How is your daughter? My son was diagnosed Stage IV neuroblastoma 3/30/06 at 5.