Update: The Battle is Over

[TyRy]

Hi all,

I was wondering if anyone knows anything about or anyone who has had spindle cell sarcoma? My DMIL was just diagnosed with this rare form of cancer (the doctors are the ones who called it rare.) The tumor is in her heart/lung/sternum area...they are not yet sure what it has attached itself to...we are still waiting to find that out. But the biopsy came back today with the malignant cancer diagnosis. Our family knows nothing about this, but we are hoping for the best, and hoping we'll get this shot again come September:
http://i104.photobucket.com/albums/m172/tracycip/Disney%202008/image116.jpg

We are in the Chicago area if anyone has any recommendations for any docs or anything.

Thanks!

[Mskanga]

Hi Ty !

I do have to chime in when I hear the word "sarcoma" as it's something not too many people know about.
My daughter who is now 16 was diagnosed with osteogenic sarcoma ( bone cancer like the one that took Ted Kennedy's leg back in the 1980's ).
Fortunately medicine has made great strides and since her diagnosis was made early she did not lose her leg , she got a prosthetic knee and a titanium rod.
I am not sure what they mean "spindle cell" with your DMIL but from what I read on your post I get the impression that they don't really know what they are dealing with.

My daughter's diagnosis was quite challenging but right from the start she was in a sarcoma especialized center but a sample of her biopsy was sent immediately to the mayo clinic for a second opinion , I would strongly suggest to do this if possible or somehow go for a second opinion.

I am sending you some sites that you may want to check out , two of them are sarcoma centers in Chicago , and the others are informational sites.

http://cancercenters.cancer.gov/cancer_centers/ucrc.html

http://cancercenters.cancer.gov/cancer_centers/rhiccc.html

http://www.curesarcoma.org/

http://www.liddyshriversarcomainitiative.org/

I know this is all very scary and overwhealming but the more you know about it , the better. Keeping you in our prayers and I hope this helped.

BTW I forgot to tell you , my daughter has been in remission for 14 months now and going strong.

[Pea-n-Me]

I know a little bit about spindle cell tumors because my dog had a form of them. Being a nurse and a cancer survivor myself, I probably read more about them than most people would.

Spindle cell tumors are a form of soft or connective tissue sarcoma that can occur in many areas of the body. They get their name because at the cellular level, they resemble spindles when studied under a microscope. You're right, there is not a huge amount of information out there about them.

What is known is that excision of the tumor(s) is ideal as they are not always predictable (ie some can grow slowly, and others aggressively). So they assume they are aggressive and treat them accordingly. A quick search around the net for information on humans ;) shows that, after removal, they are sometimes treated with radiation and/or chemotherapy (not so for dogs, usually).

The thing about them is, that they can metastasize, ie spread. And metastasis is really how cancer kills. If the area of the tumor can't be excised, sometimes they will do radiation to kill the cells that way (radiation is very precise nowdays). Chemo may be offered to kill any cells that "got away" from the original spot (which will be those that metastasize) and/or shrink the tumor, but that's something that's decided by an oncologist based on information known about the tumor and how agents would work against it; and of course, the patient.

As far as surgery goes, they want to get a very wide surgical margin because these tumors are known to come back (as they did in the case of my dog, even after removal several times. She also eventually developed a brain tumor which was thought to be a mets from the cancer). Wide clean margins gives a better chance that normal cells will grow there, not the cancer cells, which can remain microscopically (but local radiation can also "clean up").

Please be sure to go to the absolute best cancer center in your area. They will know best how to deal with it. You never want to have any regrets about what you should have done, later. Go to the best now. HTH. :hug:

[Mskanga]

Unfortunately radiation is not very effective with bone cancer but in some cases it is given especially when resection ( surgery ) is not an option. The big issue with any type of sarcoma is the spreading , and it usually spreads to the lungs. That is the reason why the treatment protocol in many cases includes chemotherapy before and after the surgery.
Something that can be also considered is protom beam radiation which is more precise than normal radiation.

[Pea-n-Me]

Given its location, it may be a soft tissue sarcoma as opposed to a bone tumor (though it sounds like they need to learn more).

TyRy, here's some more general information on soft tissue sarcomas.

http://www.cancer.gov/cancertopics/factsheet/Sites-Types/soft-tissue-sarcoma

http://www.cancer.gov/cancertopics/types/soft-tissue-sarcoma/

http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_sarcoma_38.asp

http://www.nlm.nih.gov/medlineplus/softtissuesarcoma.html

[TyRy]

Hi Ty !

I do have to chime in when I hear the word "sarcoma" as it's something not too many people know about.
My daughter who is now 16 was diagnosed with osteogenic sarcoma ( bone cancer like the one that took Ted Kennedy's leg back in the 1980's ).
Fortunately medicine has made great strides and since her diagnosis was made early she did not lose her leg , she got a prosthetic knee and a titanium rod.
I am not sure what they mean "spindle cell" with your DMIL but from what I read on your post I get the impression that they don't really know what they are dealing with.

My daughter's diagnosis was quite challenging but right from the start she was in a sarcoma especialized center but a sample of her biopsy was sent immediately to the mayo clinic for a second opinion , I would strongly suggest to do this if possible or somehow go for a second opinion.

I am sending you some sites that you may want to check out , two of them are sarcoma centers in Chicago , and the others are informational sites.

http://cancercenters.cancer.gov/cancer_centers/ucrc.html

http://cancercenters.cancer.gov/cancer_centers/rhiccc.html

http://www.curesarcoma.org/

http://www.liddyshriversarcomainitiative.org/

I know this is all very scary and overwhealming but the more you know about it , the better. Keeping you in our prayers and I hope this helped.

BTW I forgot to tell you , my daughter has been in remission for 14 months now and going strong.

Hi Mskanga - may I first say what wonderful news about your daughter!! My fingers are crossed for her continued remission. :hug:

Thank you for the links and information. We used them and then helped forward the information on to DFIL. The hospital she was at at least acknowledged that they had no experince and while we thought they might have a few suggestions, it seems like the research we did led them to transferring her. It was a wee bit frustrating.

I know a little bit about spindle cell tumors because my dog had a form of them. Being a nurse and a cancer survivor myself, I probably read more about them than most people would.

Spindle cell tumors are a form of soft or connective tissue sarcoma that can occur in many areas of the body. They get their name because at the cellular level, they resemble spindles when studied under a microscope. You're right, there is not a huge amount of information out there about them.

What is known is that excision of the tumor(s) is ideal as they are not always predictable (ie some can grow slowly, and others aggressively). So they assume they are aggressive and treat them accordingly. A quick search around the net for information on humans ;) shows that, after removal, they are sometimes treated with radiation and/or chemotherapy (not so for dogs, usually).

The thing about them is, that they can metastasize, ie spread. And metastasis is really how cancer kills. If the area of the tumor can't be excised, sometimes they will do radiation to kill the cells that way (radiation is very precise nowdays). Chemo may be offered to kill any cells that "got away" from the original spot (which will be those that metastasize) and/or shrink the tumor, but that's something that's decided by an oncologist based on information known about the tumor and how agents would work against it; and of course, the patient.

As far as surgery goes, they want to get a very wide surgical margin because these tumors are known to come back (as they did in the case of my dog, even after removal several times. She also eventually developed a brain tumor which was thought to be a mets from the cancer). Wide clean margins gives a better chance that normal cells will grow there, not the cancer cells, which can remain microscopically (but local radiation can also "clean up").

Please be sure to go to the absolute best cancer center in your area. They will know best how to deal with it. You never want to have any regrets about what you should have done, later. Go to the best now. HTH. :hug:

Thanks so much for this Pea-n-Me - we basically copied what you wrote and emailed it to DFIL...I think what you have is as much (if not more) than what we were able to find on the web. Since DMIL is in such good spirits we told her we found much more research on this for dogs than humans. The suggestion was then made to send her to our doggie's vet...she got a good laugh out of that! ;)

I must say we are just a tad concerned because the docs now think the tumor is too big to try and remove surgically at this time since it is pressing on a bunch of vital organs (heart, lungs.) They are going to start her on chemo to shrink it and then go in and get it.

Unfortunately radiation is not very effective with bone cancer but in some cases it is given especially when resection ( surgery ) is not an option. The big issue with any type of sarcoma is the spreading , and it usually spreads to the lungs. That is the reason why the treatment protocol in many cases includes chemotherapy before and after the surgery.
Something that can be also considered is protom beam radiation which is more precise than normal radiation.

Given its location, it may be a soft tissue sarcoma as opposed to a bone tumor (though it sounds like they need to learn more).

Tee hee - you were both kind of right! They do think that it is a soft tissue sarcoma, but we've also found out that due to the "spindle" shape of the cells, that somehow makes them more resistant to radiation. That was something that I'd never heard of. I think that may be why they are starting her with chemo.

TyRy, here's some more general information on soft tissue sarcomas.

http://www.cancer.gov/cancertopics/factsheet/Sites-Types/soft-tissue-sarcoma

http://www.cancer.gov/cancertopics/types/soft-tissue-sarcoma/

http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_sarcoma_38.asp

http://www.nlm.nih.gov/medlineplus/softtissuesarcoma.html

Once again Pea-n-Me, thank you! We visited each of these and were able to compile stuff for DFIL that he share with DMIL's docs at the original hospital.

Update time - Thanks to a lot of the info you all gave, and listening to some friends that have gone through this unfortunate experience, DMIL is now at the University of Chicago Medical Center. She was transferred late yesterday, and has already seen a bunch of different doctors in different areas today. They also have one on staff that specializes in Sarcomas, so at this point we think she is in good hands. They will run their own biopsy on the slides sent from CDH and also rerun her cat scan and echocardiogram.

You are the best - thank you for helping my family with all your information and good wishes... a big :hug: for all of you!

[Mskanga]

Ty , I am glad that she was transfered to UCMC , and I am even more glad that she is being treated in a place by a sarcoma especialist and that they are doing their own diagnosis , this way they will know exactly what they are dealing with and follow the proper treatment.
The scans and echo are usually used for baseline and then they re-do them as the treatment goes along to see the progress of the treatment.
Best of luck to you and let me know if I may be able to help again.

[TyRy]

Thank you all again for all the information and thoughts. We finally have a path forward. First, after sending the slides to the Mayo Clinic they changed the type to Synovial Sarcoma. While still rare, there seems to be a lot more information out there on it. They will operate on Friday, as they want to get the tumor out, but they also know it has pentrated the heart. The unknown it just how far and deep in a couple of places, so it will be open heart and possibly rebuilding of part of it. The wildcard is how much/deep it is in the right ventricle (I think that's correct) as they cannot rebuild/fix that.

Thanks again everyone!

[Pea-n-Me]

:hug:

[luvmarypoppins]

:hug: Sending thoughts and prayers for your mil.

[mommasita]

I will keep our MIL and your family in my daily prayers. :grouphug:

[frdeb1999]

Thoughts and prayers for your MIL. :hug:

[Flossbolna]

I am so sorry to hear about your MIL's illness. She sounded like such a wonderful person on your trip report! I am sending thoughts and prayers for her! :hug:

[Mskanga]

One day at a time Ty.....and the good thing is that they can take it out.

[TyRy]

Thank you all so much for your prayers and thoughts, they really do help!! SO DMIL had the surgery today, while it wasn't horrible, it was kind of a bad case scenario as expected.

They were able to get about 75% of the tumor which was much larger than they thought. The cardiac doctor doesn't think it has metastiszed. The bad news (which we expected) is that it has grown into (or maybe from) the heart...the right atrium and right ventricle. Also because the tumor was so mushy (yes, my language) they could not put her on a bypass machine and get more out of the atrium and rebuild it. It would have caused too much bleeding. It's the right vetricle that causes the main concern because they really can't do anything with that unless they do a whole heart transplant. So now we wait till early next week and her oncologist will map out the new path forward. Best case now is that the chemo and/or radiation will finish the job.

The surgeon did say the amount of tumor that is left is not really doing any damage to her heart, so she can resume doing whatever she wants and feels up to doing...while I know she will love to hear.

Thank you all so much again and I'll keep everyone updated...you guys are the best and my family really appreciates it. :hug: :hug:

[mommasita]

Glad to hear that surgery is over. Sadly, there always has to be some bad news. Good news on the fact that they don't think it has metastiszed.
I will be hoping and praying for the best for her now. :grouphug:

[Flossbolna]

Good to hear that the surgery is over! I wish you and your family all the strength you need to get through the next steps to make your MIL healthy again! :hug:

[Pea-n-Me]

Am keeping MIL in my prayers.

As a cardiac nurse, I've seen many cardiac tumors over the years. They're rare, but just to let you know, she's not alone. :hug:

[minniebeth]

:hug:Hugs to you and your family and your DMIL and all of you are in my prayers...

[ERICS MUM]

I rarely post on this forum but having read this thread I have been moved by the kindness of "strangers" in giving practical information and emotional support to TyRy. It restores my faith in the goodness of human nature.

Thank you for a very up-lifting thread, although of course I am sad that the thread ( and this forum as a while) has to exist.


Linda:grouphug:

[brookelizabeth]

Hi Ty...I am happy to hear surgery went well and will be praying chemo does the rest of the job! :goodvibes

[Pea-n-Me]

I rarely post on this forum but having read this thread I have been moved by the kindness of "strangers" in giving practical information and emotional support to TyRy. It restores my faith in the goodness of human nature.

Thank you for a very up-lifting thread, although of course I am sad that the thread ( and this forum as a while) has to exist.
This is a really great forum.

A lot of the regular posters are people who've been through "stuff" themselves and know how how hard it is and how much it means when people care. It also helps us "Pay it forward" to be able to help others when so many helped us when we needed it.

I imagine some here consider it a "downer" and stay away. (Just look at the responses on the recent Farrah Fawcett thread.) It's easier not to think about the bad stuff when things are going well for you and your own family.

But eventually stuff happens to everyone, so it's good to know that there are people here who will offer information and a hug when you need it.

Thanks for posting. :flower3:

[Mskanga]

If there's something I want after what I went through with my daughter ( other than a cure for cancer ) it's to have nobody go through it alone .

[TyRy]

Hello everyone,

Before I say anything else, I really do want to echo the sentiments Erics Mum - this really is a wonderful forum for support, kindnesss and even knowledge.

I kept meaning to get back on here and post, but haven't been dealing with things well and today was a blow. DMIL was great right after surgery, then had a minor hospital stay as she was bloating and having trouble breathing, then was ok again. The diagnosis was also changed to "poorly differentiated synovial sarcoma" (not sure if I spelled that right.) Even so she and DFIL were even at our house for a Father's Day celebration, although you could tell she was still somewhat out of breath. Later that week they did another scan and it now showed two spots on her lungs, which had not been there before. That now meant instead of radiation first like they planned they waated to start chemo.

Well, they did another scan on Monday...today we got the results. The cancer has spread like wildfire, and is now intruding on most of her organs and really strangeling her heart. The doctor still did her first chemo treatment and wants to do a double dose one next week. But if it doesn't show results we are not sure what will happen. He has prepared us that if the cancer continues on this path, her heart will give out soon and she'll have a massive heart attack.

Everyone is just devastated, but DMIL is still in somewhat good spirts. It's the fact she can't walk five feet without being out of breath that is getting her down. We're not sure what's going to happen next...I guess we wait a week and see what happens with the chemo. But when the doc starts telling you what to say to the ambulance that you'll be calling, it's just devastating.

Thanks all for letting me ramble!! :flower3::hug:

[Mackey Mouse]

I am so sorry to read this..spend your time loving her and being with her in any way you can. Cancer is horrific and sometimes it is slow growing and other times it spreads everywhere.. I hope that whatever does happen for her it is without pain. God bless you all.

[dougsmom98]

My thoughts and prayers are with your family.

[Flossbolna]

TyRy, I am so sorry! :hug: I wish your DMIL all the best and hope that the chemo is a success. I will keep your family in my thoughts and prayers! :flower3:

[luvmarypoppins]

:hug: So sorry to hear this news. Praying that you all will know Gods peace and comfort in the days ahead. May all your time together be precious to you all.

My heart so goes out to your mil. My tumor was crushing my trachae and I could barely breathe, walk or swallow before they took it out. I am sure you have all the things that could help her like walker, commode, wheelchair, shower tub seat etc. Any or all of those things might make things a little easier for her ADL activities.

Blessings to you all.

[minniebeth]

I know that was not the news you wanted to hear, I'm so sorry....
I'm glad you DMIL is in somewhat good spirits, and when the shock of the news settles, you all can be too and enjoy your time surrounding her and loving her. You all will be in my thoughts and prayers...:hug:

[OKWMom]

:hug: I'm so very sorry. Prayers for you and your family.

[frdeb1999]

So very sorry. Your all in my continued thoughts and prayers. :hug:

[Pea-n-Me]

I'm sorry, TyRy. Keeping your family in my prayers. :hug:

[Mskanga]

TyRy ;
I am sorry to hear about the latest setback , but let's hope that the chemo works. From what I was told initially , radiation is not very responsive to some kinds of sarcoma , and this could be the case here , but chemo may work better.
Let's keep faith and hope for the best. You're in my prayers.

[TyRy]

Thank you all again and I'm going to reach out for your help once more in just a second...

TyRy ;
I am sorry to hear about the latest setback , but let's hope that the chemo works. From what I was told initially , radiation is not very responsive to some kinds of sarcoma , and this could be the case here , but chemo may work better.
Let's keep faith and hope for the best. You're in my prayers.

You are right on the money...we were also told that it could be resistant to radiation. The other problem is the chemo drug that will work best, could damage her heart further so they did not want to use it.

We saw her this weekend and it's amazing how fast this thing seems to be happening and weakening her. A week ago she was saying she didn't need a wheelchair and now she is in it to go anywhere in her house or outside. She can't sit comfortably unless she is leaning forward and is having a lot of trouble sleeping...very understandable!

As I said she had her first treatment last week using Gemzar and this week she'll get that and Taxotere.

We are having a meeting with the oncologist at Univ of Chicago she has been seeing on Tuesday. DFIL has asked us to come along as he is just becoming drained and we may be able to disseminate the info better. Some of the questions we have are:
Why is she not a candidate for any type of clinical trial...if they would all damage her heart and her heart is going to give out anyway (according to him) shouldn't we at least try?

Since it has grown like wildfire but is only pushing on other organs and not invading would she be a candidate for a heart transplant?

Could they go back in and remove parts of the tumor again to give her some relief?

Does anyone have anything else that we should be asking at this point? We are, of course, now playing the "what if" game...what if we took her to Northwestern, or Mayo or Cleveland instead...you get it. I may still call a couple just to see what that say and if they could even see her.

Thank you all and hope you are having a wonderful and safe weekend.

Ty

[Flossbolna]

Ty, I am sorry, I can't help you with your questions, but I really hope that the chemo will work!! My father had chemo a few years ago, which worked, but damaged his heart. Fortunately not too bad and while the doctors claimed that the heart would not heal, he actually is much better now. And I recently read an article that said that new studies claim that the heart actually can heal - so far the general opinion seems that any damage to the heart is irreversible. But this might be changing. I wish your DMIL all the best and will keep you in my thoughts and prayers! :goodvibes

[Pea-n-Me]

I sent you a PM. :grouphug:

[TyRy]

Ty, I am sorry, I can't help you with your questions, but I really hope that the chemo will work!! My father had chemo a few years ago, which worked, but damaged his heart. Fortunately not too bad and while the doctors claimed that the heart would not heal, he actually is much better now. And I recently read an article that said that new studies claim that the heart actually can heal - so far the general opinion seems that any damage to the heart is irreversible. But this might be changing. I wish your DMIL all the best and will keep you in my thoughts and prayers! :goodvibes

Thanks Flossbolna and that's great to hear about your father. It's so nice to hear a good success story

I sent you a PM. :grouphug: Thanks Pea-n-Me...you have one in return.:flower3:

[Mskanga]

TyRy;

Unfortunately clinical trials have criterias and requirements , some of them more strict than others and yes while I know sometimes it's not fair , doctors cannot do much about it. It also depends on if the trials are open or not at the time , I know people whose children have not qualified for osteosarcoma trials because their children are too young ( in age ). If the one chemo they did not want to try on her because her heart would suffer was cisplatin I can tell you from experience that they are right on the money , that is a very strong one and they have to be very careful with it. Sometimes the treatment is worse than the disease itself.

As far as going in to remove parts of the tumor , most surgeons will not do that because they do not want to disturb the tumor for the fear that it will spread. My daughter's surgeon did not want to do an open biopsy , he did a needle biopsy. The only time they go in is if they anticipate to be able to resect the whole thing or if there's no major organs involved.

My suggestion to you is make a list of your questions no matter how insignificant you may think they are , and ask those questions the day you go in. At the same time it wouldn't hurt to consult with other facilities , Mayo clinic or even MD Anderson in Houston Texas.

Keeping you in my prayers .

[TyRy]

Hi all,

We accompanied DMIL to the doctor today. At first, he was very encouraged because her cough had stopped and her lungs did not refill with fluid. Then her blood readings came back and he was not at all happy with her liver or kidney functions. He is hoping that this is due to her being dehydrated (which I think some other level showed). So instead of her second chemo, they will be doing IV infusions for the next couple of days, trying to see if that gets her levels back up and then do the chemo at the end of this week. I'm really hoping that dehydration is all it is.

TyRy;

Unfortunately clinical trials have criterias and requirements , some of them more strict than others and yes while I know sometimes it's not fair , doctors cannot do much about it. It also depends on if the trials are open or not at the time , I know people whose children have not qualified for osteosarcoma trials because their children are too young ( in age ). If the one chemo they did not want to try on her because her heart would suffer was cisplatin I can tell you from experience that they are right on the money , that is a very strong one and they have to be very careful with it. Sometimes the treatment is worse than the disease itself.

This was something the doc mentioned today, that they know they cannot cure this one, BUT they can try to control it and explained the whole risk to reward type thing.

As far as going in to remove parts of the tumor , most surgeons will not do that because they do not want to disturb the tumor for the fear that it will spread. My daughter's surgeon did not want to do an open biopsy , he did a needle biopsy. The only time they go in is if they anticipate to be able to resect the whole thing or if there's no major organs involved.

His big reason for not going in again was two-fold. First he said that then there would be recovery time needed where they could not do the chemo, and if the chemo is giving some relief or working a bit, they do not want to stop that. Second was that he said even if they went back in and got 90%, that it grew so quickly between the first surgery and now, it would come right back.

My suggestion to you is make a list of your questions no matter how insignificant you may think they are , and ask those questions the day you go in. At the same time it wouldn't hurt to consult with other facilities , Mayo clinic or even MD Anderson in Houston Texas.

That's what we did today...and we started to ask about some radical/experimental, but the doctor said we are not at that point yet. He wanted to wait to discuss them later when the time comes. He reminded us that most clinical trials/experiments and just that and a lot of the time they fail. He wants to give chemo a chance. And we are in the process of trying to get another consult..I think we are starting with Northwestern since it's right here.

Ty

[Mskanga]

TyRy;

If the chemo is working obviously that is what you want to try first but don't let anyone discourage you from clinical trials by telling you they fail many times , they also work many times. Please keep that in mind.

Take it one minute at a time , not even one day but one minute at a time. And also take the small victories like the stopping of the cough or the lungs not refilling with fluid and focus on that.

[TyRy]

As Mskanga said below, we are now taking it one minute at a time. We recived the news we were dreading....no more chemo. They did another blood test today and it showed her kidneys were bad and she had zero blood platelets (I did not hear from the doc directly but from DH.) It seems that her heart is just not functioning enough to support her organs.

They are going to keep her in the hospital another day or two, and then send her home to hospice. The doctor did not give us a timeline, and we are not sure if we should be rushing to take off work, or wait in case her strength wills her to stay with us longer.

Thank you all again for your support through this...I'm still stunned at the speed of this.

Ty

[Pea-n-Me]

I would probably take the time off. :hug:

[Flossbolna]

TyRy, I am so sorry to hear the bad news! :hug::hug::hug:

[Mskanga]

Ty ;
I am sorry to hear the news. I will tell you though that I would be taking the time off from work now. Recovering from chemo treatments is hard enough on someone who does not have heart problems , I cannot imagine on your MIL's case with the compromised heart and other organs.
My suggestion is if possible take the time off now. Keeping you in our prayers.

[Mackey Mouse]

I am so sorry to read this, but I agree with the others now is the time to be there and if that means taking time off.. I would do it.

Chemo is so difficult and while it sometimes takes out those cancer cells, it destroys good ones as well. I am there myself watching my husband and truly it is difficult.

Hugs to you and yours,
Marsha

[TyRy]

I just wanted to say thank you everyone for all your thoughts, prayers, and advice. I know some of you have gone through or are going through this and you've all been a great bunch.

I'm sorry to say that my DMIL lost her battle early this morning. She passed away at home, gracefully, without pain, in her sleep. She was so giving and loved generously. All of your thoughts, well wishes, and prayers were greatly appreciated. We will miss her so much. She gave me a lot of my love for Disney and we've never been on a trip without her...we will be going back in September as planned as an honor to her. I'm only so very sorry that she will not be with us as she was so looking forward to staying at the Grand Floridian for the first time.

Thank you all again - you are a wonderful, kind, caring bunch of people.

Tracy

[teskak]

I am sorry, but I am thankful the last steps of her journey were peaceful.

[antmaril]

I am very sorry for your loss.

[OKWMom]

Tracy, I am very sorry for the loss of your DMIL, but thankful that she went without pain. :hug:

[Mackey Mouse]

Tracy...please accept my heartfelt condolences.. I hate reading these and each time I do it brings the reality of this horrid disease to the forefront for those of us still in the battle.

I am so glad you will be going to WDW in her honor and staying at The Grand, she will be with you in spirit.

Please take care of yourselves these next few days......services etc. can be very difficult..

Many hugs,
Marsha

[Pea-n-Me]

I'm sorry, TyRy. :hug: I'm sure your MIL appreciated how caring all of you were in her time of need.

[Flossbolna]

TyRy, I am so sorry and really regret not being able to express myself in English as good as I would want to. I will be thinking of you and your family! I wish you that you will be able to celebrate her life in September as you are planning to do without being overwhelmed by grief. :hug:

[Mskanga]

Ty , I am so sorry about your DMIL passing ....and I am so sorry that everything happened so fast.

Two of my friends also lost their children to osteosarcoma this week , I HATE cancer more than you know. My prayers and thoughts remain with you.

[irish dancer]

I've mostly been a lurker on your trip reports and this thread too. We live not far from Berwyn so it kind of felt like I "knew" you. I'm so sorry you have lost her but thankful that she wasn't in pain. She will I'm sure be with you in Sept at your Grand Floridian stay. I will continue to pray for you and your family during this difficult time. :hug:

[MariDisney]

I am so sorry for your loss.

[quasar4legs]

I am so sorry to hear this news Tracy. I shall be thinking of you and your family during this time of grief and loss. Your DMIL certainly sounds like she was a special part of your life.

Big Koala cuddles to you.:hug:
Trish

[BeyondKen]

Sorry for your loss.

[frdeb1999]

So very sorry for your loss. :hug:

[Tinker'n'Fun]

I am so sorry for your loss. Your post show what a caring wonderful DIL you are and I am sure you MIL is looking down at you smiling right now.

[CarolynU]

My thoughts are with you for your sad loss.

[312.Duck]

Hello everyone, 312.Duck here; DH of TyRy, son of this wonderful person.
I just wanted to thank everyone for all the great, helpful info, prayers, thoughts, and well-wishes.
My mother really appreciated them.

My mother passed at 2:05am on 7/12/09 gracefully in her sleep; the suffering is over.

This happened so quick, but we were able to tell her we love her and she responded with the same.
She wasn't defeated, never cried, and simply said "We tried. We did everything we could do."

She died of primary malignant heart cancer - extremely rare.
Extremely active, fit, 69yr old supergrandma (lived for her grandkids), she was fine and at our house on May 3.
She found she was getting very tired just doing simple things like laundry, went in for scans and such,
and was diagnosed on May 13th with a cardiac sarcoma growing from the right side of her heart.

As documented here, the tumor quadrupled in size within a month after attempted excision (removed 50% -
it was already huge and had invaded the right ventricle). It was pushing on her lungs, liver, and had shoved
the heart up against her rib cage making each breath a struggle. She was administered one chemo treatment on July 1st,
but her heart (from all the pressure and internal blockage) could no longer support the kidneys and liver enough to continue.

She scrawled a note to my dad Thursday, July 9th asking: "will I ever get better?"
That day they told my dad there could be no more treatments.
.
.
.
She never shed a tear during this - just focused on getting better.
I couldn't contain myself and started sobbing on her shoulder at the hospital Friday, the 10th, when she found out they were finished.
Still, she rubbed my head and told me:
"it's going to be all right." (a mother till the end...)
Very stoic and graceful, she stated "We tried. We did everything would could do."
They brought her home that evening to expire with her family around.

Around 2:05am Sunday morning (the 12th), my brother said she let out a sigh and clutched the air as if grabbing for her parents.

The suffering is over.
This all happened so quick, yet again, we were able to tell her we love her and receive a response. She will be sorely missed.
.
.
.
Thanks again to everyone for all your support during this time.
My head's still spinning; this all happened way too fast to the least deserving, most loving person in our family.
She lived a great life, but had so much more to live for and never had a chance to fight.
I've always been half a "DINK," but it kills me to know if I ever do have any kids they'll never get to love each other.

I love you, Mom. Goodbye.
- Mark Ryan

ps.
I showed her some of the emails and responses here a few weeks ago, and she was really touched by them. We are really lucky to have you all as friends.

pps.
I believe the last diagnosis was poorly differentiated synovial sarcoma of the right ventricle (though it had enveloped the entire heart).


http://farm3.static.flickr.com/2441/3715687270_b958ef6f44_m.jpg
Patricia "Pat" Ryan
3/11/40 - 7/12/09


http://farm4.static.flickr.com/3522/3719681744_bf0e8c0854.jpg
Her license plate...
"Proud member of the Donald Duck Fan Club"

[luvmarypoppins]

I am so sorry to hear of your moms passing. She was blessed to have such a caring family to surround her. Praying that you will know Gods peace and comfort in the days ahead. My deepest sympathy to you. What a beautiful way to honor your moms memory with your trip. May it be a wonderful healing time for you all. Blessings to you all.

[Pea-n-Me]

:sad1: That was beautiful, Mark. The love between you all is very evident - and touching. I'm sorry your Mom passed away, but I am glad you all got to say the things you wanted and needed to say. She was beautiful, and she must have been a really great lady. :angel:

(Sitting here on vacation in the hotel lobby with strangers on their laptops around me, I'm sure wondering why I'm sitting here crying. I can't help but think of my own son here. I imagine your Mom's chuckling at me. ;) )

[Mackey Mouse]

"We tried. We did everything we could do."

Oh Mark, what a beautiful post about your Mom and she was incredible to the end. She said it all... she tried, you all tried, and everyone did the best they could. I hate cancer.. I am so sorry that you lost your beautiful vibrant Mom to this beast..

Please take care of yourselves these next days, they can be so hard sometimes, but she was your Mom right to the end........I love that.. writing this through tears..

God bless you all.

[minniebeth]

I am so sorry for your loss...your mother and DMIL is a beautiful woman full of life. Your love for her is so touching. You all will be in my prayers and thoughts. :hug:

[ERICS MUM]

Dear Mark,

what a fine and fitting tribute to a mum who sounds like a beautiful person in mind and in body (you attach a lovely photo). It sounds like your mum was a mainstay of your family, and I hope you find it possible to celebrate her life and her presence in your lives, alongside your grief.

Linda

[312.Duck]

...Thanks to each of you for your kind words. I miss her dearly.



God I wish I could go back and hug her more. Only now do I realize what people truly mean when they tell you to cherish every moment with your loved ones, and it's eating me up, bad.

[frdeb1999]

That was truely beautiful. Took me a min to see the updated post. Hugs to you and your family.

[Mackey Mouse]

The loss of one's Mom is very difficult as they are usually the cement that binds the family together......There is not a day that goes by that I do not think of my Mom and it has been 22 years for me.. I know that you want that one more hug, that one more smile, that one more laugh, but know this you carry those in your heart and you can bring in your mind whenever you need them. Not quite the same, but they are there, call on them when you need them..

Take care of yourself..
Marsha

[312.Duck]

Thank you SO much, Marsha. I plan on doing that - a lot.

When she was dying ... I just wanted to hold her in my arms as she did with me as a baby.

[PracPerfPatricia]

Mark,

I just came over to this thread and wow-I knew that you and your family had been through a lot but wow...

I think it was one of Tracy's posts when she said your mom was having a rough time breathing after one of her treatments...I think that is probably a good analogy for your whole family-this thing happened so quickly to your mom and in turn to all of you-I imagine it was difficult for all of you to breathe-I was in fact holding my breath while reading...

I can't say I know exactly how you are feeling because I haven't lost my mom yet but since she is over 70 I know it is something I will have to face...and I hope I can do it with 1/10 the grace you are...

I am so sorry for your loss. I think you should take comfort from all the love and support that you gave her. And being a mom myself I can tell you this...

she wants you to go on and live-really live a great and happy life-that's why she had you...it is right that you should grieve but she would want you to go on and laugh and be happy and remember her when you are having a great time...I think she would have thought the trip was a great idea...

Warmest wishes for comfort and peace...

[312.Duck]

I can't say I know exactly how you are feeling because I haven't lost my mom yet but since she is over 70 I know it is something I will have to face...and I hope I can do it with 1/10 the grace you are...

I am so sorry for your loss. I think you should take comfort from all the love and support that you gave her. And being a mom myself I can tell you this...

she wants you to go on and live-really live a great and happy life-that's why she had you...

PracPerfPatricia -

Wow, I'm sorry I didn't respond earlier. I've read your post a few times now, could swear I had, but obviously only in my head and not on the keypad.

Thank you SO MUCH for the kind words, particularly as a mom yourself. Knowing my mother, she was content to - and said as much the day before - to let "nature take its course" after we had done every last thing we could do... even down to just rubbing her back and arms as she lay there her last couple hours.

I can't directly relate not being a father myself, but I'd imagine the touch of my child - the extension of my life here on Earth - would be of great comfort and contentment.

Thanks again.