Wednesday, September 10, 2008

Finally, news about Rachel . . .

We finally got the results from the biopsy and have been told that Rachel has Synovial Cell Sarcoma. From what I understand, it is a form of cancer that is found in tumors in the soft tissue. I have included some information below to answer all of your questions. I still don't know anything specific about how we are going to move forward with this. Her results are being forwarded to MD Anderson cancer center and they will contact us after they assign someone to her case. I am feeling very overwhelmed and shocked! I feel like the wind has been knocked out of me. I really wasn't expecting this. I want to thank you for all of your phone calls, prayers and support. Please continue to keep Rachel in your thoughts.


General Info:
Synovial Cell Sarcoma (synovioma): This is an unusual tumor that occurs in the soft tissue, but the exact tissue is not known. These tumors are usually found in the feet, knees, thighs and hands. When this type of cancer spreads, it will usually go to the lungs, bones and lymph nodes. These tumors are more common in males than in females.

What are some of the signs and symptoms of soft tissue sarcoma?
The signs and symptoms of these tumors may vary depending on the location of the tumor and the specific type of tumor. There may be pain and swelling around the affected tissue. If the tumor is located in a muscle or synovial tissue, the child may experience limited and painful movement of an extremity or joint. Sometimes the symptoms may be vague and go undetected for extended periods of time.

What causes soft tissue sarcomas?
There is no known cause for these types of tumors. There is no evidence that recent injury to the affected area is the cause of this disease. It is also known that this disease is not contagious.

Who gets soft tissue sarcomas?
These malignant tumors may occur in both adults and children. These tumors are rare in infants and young children. Soft tissue sarcomas account for approximately three percent of the childhood cancers diagnosed yearly. Rhabdomyosarcoma is the most common type of soft tissue sarcoma diagnosed in children.

Are soft tissue sarcomas inherited?
There is no evidence that these tumors are inherited.

What are metastases?
Metastases refers to the spread of cancer from its original location to other parts of the body. These types of tumors tend to metastasize to the lungs.

What is staging?
Staging is the process of determining the extent of the disease at the time of diagnosis. Staging is necessary to assist the physician in choosing the most appropriate treatment plan for the child. The staging systems may vary depending on the known patterns of metastasis of the sarcoma.

How can soft tissue sarcomas be treated?
There are three methods of treatment used for soft tissue sarcomas: chemotherapy, surgery and radiation therapy. Treatment may vary according to the type of sarcoma, the age of the child at diagnosis, location of the tumor and stage of the disease. Frequently more than one treatment method is used to treat these types of malignant tumors.

Chemotherapy is the use of drugs to kill cancer cells. Chemotherapy not only destroys cancer cells but also affects the growth of normal cells and therefore has side effects which will be explained to you.

Surgery involves the complete or partial removal of the tumor. Some normal tissue may also be removed and lymph node sampling performed as part of the staging process.

Radiation therapy is the use of high-powered X-rays to kill cancer cells. The treatment is given in precisely measured amounts by doctors and technicians who are experts in this field.

How long will my child's treatment last?
Treatment will depend upon the specific type of soft tissue sarcoma and the extent of the tumor. At the Aflac Cancer and Bleeding Disorders Service, parents are always included in the decision-making process when the healthcare team develops a treatment plan.

The above information is a brief overview of what you need to know initially about soft tissue sarcoma in children. The nurses and doctors can answer your questions and help you find more information.

30 comments:

  1. Nicole I am so sorry to hear that about your darling little girl. Please keep us posted. We will be thinking of your family and praying for you. I wish there was something I could do more than that. Good luck with everything.

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  2. I am so sorry to hear that! Rachel will be in my thoughts and prayers...I hope everything turns out well.

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  3. Oh, Nikki... I'm so sad... I wish I could make it all be different. Surely, they got it all when the took out the tumor in her foot. We'll pray for that! It will be hard waiting for more information.. but surely she will be okay.. can't imagine it otherwise.

    Love you so much,

    Aunt Polly

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  4. Nicole and James
    We are so sorry to hear the news. We have started praying for your family all ready. Please let us know if you need help in any way! I will be happy to watch kids or help with whatever.
    xo, The Crawford Family

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  5. I can't even imagine what you and James must be feeling right now. I just hope that you will be given the strength to fight and get through this. You will, because you're awesome. We don't always know the purpose in trials like these, but you guys will beat it. We will remember you all in our prayers! We love you. Katie, Nathan, Noah and Cole.

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  6. Wow, Niki i am so sorry for what you are all going through and so sad. Poor little Rachel!!! I hope everything will go as well as it possibly can and that she will recover from all this. Our prayers are still with your family!!!!

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  7. Nik, I am so sad to hear the news. We will continue to have you in our prayers. I can't imagine what you are going through right now. I love you. Give little Rachel hugs and kisses for me! Love, Di

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  8. Niki, We are praying for your family. keep us up to date. We love you all, don't hesitate to call if you need anything.

    Curtis

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  9. we too have you in our thoughts and prayers!!! Im sorry you all have to go through this! rachel is a Beauty, and I am sure that she is as strong as she is beautiful!!! you'll all make it through this and find a rainbow at the end!!! we love you guys!!!

    p.s. answer to your question is that i use the canon 30D and Photoshop cs2

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  10. Oh Niki, I'm so sorry. I'll keep you guys in my prayers. Love you!

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  11. Niki,
    We are so sad to hear about this. Uncle Jimmy and I have you all in our prayers. Everything will be OK I just know it will.
    Love you,
    Aunt Cari

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  12. Oh Nik, I am so sorry! I know that this is such a hard time for you right now but I just know that everything will be ok. I am so glad that I got to talk with you yesterday and please know that you can call if you ever need to vent! Love ya girl! Rach will continue to be in our prayers.

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  13. We are so sorry to hear that is cancer! We know that this will be a difficult time, but they have made such great improvements in treatments now that we hope it isn't too bad or too long. We will continue to pray for all of you, especially Rachel.

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  14. Niki,
    Evan and I will keep all your family in our prayers. Prayer is a powerful tool. We truly believe it is what saved Rachel's daughter Mia's life 3 years ago. Just remember, God is in charge.
    Love, Luana

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  15. Oh my goodness! Rachel seems too little and sweet to have to go through all of this. We are of course thinking about you guys and praying for you and hoping for the best.
    Love you!
    -Brooke

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  16. Oh gosh - this is unexpected. And it is so rare - there are just so many questions. Maybe with so many questions that leaves room for hope. I certainly am filled with hope for her! We will continue to pray for her - and I know you are strong enough to get through this. And Rachel is tougher than she looks!

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  17. Hi. My name is Sherry Glazier. I live next door to some friends of yours, Tyson and Tecia Kearns. Tecia told me about your little Rachel and my heart truly goes out to all of you at this time. I am posting on here because I am actually a survivor of the same type of cancer, a Synovial Cell Sarcoma. I was diagnosed with it at age 17 and did surgery, chemotherapy and radiation. I have been in remission now for almost 8 years. I'm now married, have 2 year old twins and have a completely normal life! :) Hopefully that can give you some hope at this difficult time. As you know, Synovial Cell Sarcomas are incredibly rare. I hardly ever meet anyone that's had a Synovial Cell Sarcoma. So, I would be more than happy to talk with you or answer questions or help out in any way that I can. Please feel free to contact me anytime. My email address is sherryandbryon@yahoo.com or my blog address is theglazierfamily.blogspot.com. I can email you my phone number as well, if you would like to talk over the phone. Again, please let me know if there's anyway I can help or if you have any questions. If nothing else, I will be thinking of you all and praying for the best possible outcome for little Rachel. I know she can do it!

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  18. Nicole & James- We are so upset to hear your news about Rachael. We are pretty shocked by this and are sad to think of the tough times ahead for all of you. But as we said before, Rachael is strong and is a sweetie and did so well as a baby with her other surgery, and you have learned and grown from that as well. We think you are awesome parents and wish we could be closer to be of help or support at this time. I remember talking to Nicole right after Rachael was born and having conversations about what her personality might be like based on those first few weeks and months, and how we all know at some point we will have to deal with things like this ourselves or people close to us. We're just sorry to think that little Rachael may have to suffer....

    You'll be in our thoughts and prayers, and let us know if there is anything you need that we could provide, ie hotel rooms if needed for you for family, etc, etc. if you ever need to stay in town closer.

    Love you guys! Beth and Adrian and kids

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  19. Niki, sorry to hear about Rachel. I was checking out Tecia's blog and saw your link on the side. I was shocked at the first post being about Rachel having cancer! We hope that she gets the best help possible. I can't even imagine what you must be feeling right now. I pray that you find some time to get a little bit of rest in the coming weeks and months. Good thing Brittany is still there, right? If you have a chance, you can check out my blog www.paigesinclair.blogspot.com

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  20. I'm so sorry to hear that Nicole. Our prayers are with you and your family at such a hard time
    -JP

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  21. Nicole, I just checked your blog and couldn't believe it. I am so sorry to hear about everything with Rachel. I can't even begin to know how you are feeling. If there is anything that I can do, please let me know. I will keep you and your family in my prayers.

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  22. OH MY HECK! I am in shock! I am sorry I haven't checked your blog in a few weeks. Thanks for putting all of this information about the tumor on your blog. It was good to be able to understand more of what you're sifting through. OH please know we are thinking of you and that you are in our prayers! We love you guys!
    Adam and Mandy

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  23. Nicole, my heart is so heavy right now from reading this. Beautiful little Rachel and all that she has had to go through! You and James are so strong and incredible parents. You will make it through, though it will be so heart wrenching. I love you all and you will continue to be in our prayers. And you had to evacuate too? I should have called you today! I am soooo sorry that I didn't! Love you!!!

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  24. I just found out and I am so sorry to hear about this and that I haven't been in touch sooner (as usual, Lib did NOT inform me...). Rachel will be in our prayers. I came on the blog to see if you guys survived the hurricane okay, but it looks like you have a hurricane of your own to deal with. Lots of love from us!

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  25. Niki...this is Laura your cousin. I'm just sitting here talking to Uncle Jim and he brought up that Rachel was not doing good. I'll keep both of you in my prayers as well as your family. I hope that everything goes well and maybe we can get the family together on a sunday to do a family fast. I hope for the best for you guys!

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  26. I am so sorry to hear about your little girl. I will keep your family in our prayers!! I will hope for the best for your family.

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  27. Oh Nicole, I just don't even know what to say. We will be praying for the strength of your little girl and your family. I know from experience how scary it can be to think of your child being unhealthy. Find peace in the strength God gives you. Please keep us all updated as to how she is doing. We love you!

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  28. Nicole,
    That is heartbreaking news. My family will pray and fast for little Rachel. Peace be with you.
    Love You,
    Melanie

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  29. I love you so much Nik! I'm thinking and praying for you and your BEAUTIFUL little Rachel. You know you can call me ANY time... I'm always up!

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  30. Nicole, I've been out of town & I just started thinking about you and felt I should look at your blog to find out if you found anything out yet. I'm so sorry about your little Rachel. I can't even imagine what you must be going through right now. My face is full of tears right now. We will pray for you & have faith for the best. I love you.

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