Prairie from Nebraska - Dx 2015

[Bonni Hess]

Dear MJ, Thank you for your special caring and thoughts for Brittany in the midst of your own diffucult ASPS challenges with your precious daughter. VERY thankfully and relievingly Brittany's yesterday's brain and spinal MRI's were completely clear with no indication of any new brain or spinal mets which would explain her recent severe unrelenting headaches. Her very knowledgeable and thorough radiation oncologist who we met with to look at and review the scans following the MRI's is perplexed about Brittany's concerning headache pain but based on Brittany's description of the location and type of the headache pain suggested that it could possibly be caused by an occipital virus so we will explore that further and I will update with more information in Brittany's Cediranib topic on the Discussion Board of this Forum. Thank you again for your caring and concern. With great relief, and with special caring thoughts, healing wishes for your dear daughter, and continued Hope, Bonni

[Bonni Hess]

Hello again dear MJ, I am sorry that I somehow missed your previous post with all of the thoughtful updated information about your dear daughter's primary tumor treatment plan. We are just leaving for a several day outing on our boat but I will respond to your update when we are in an area where we have internet/phone service. In the meantime, please know that your precious little girl, you, and your family are all.held very close in my heart and my most caring thoughts. Heart to heart with deepest caring, healing wishes, and continued Hope, Bonni

[Bonni Hess]

Hello again MJ, I am very perplexed and disappointed about Dr. FRITZ Eiber not treating pediatric patients, but perhaps it was his father Dr. FREDERICK Eiber who successfully resected the difficultly located pelvic area primary tumor of Katrina, one of the previous pediatric ASPS patients on this Board. I applaud you having already sought three different surgical opinions, but am sorry that gross removal of the tumor is all that the doctors think is possible without amputation of a leg and a colostomy which I agree is not an acceptable option for your young daughter. I am not personally familiar with the radiation pouches which the doctors are considering. They might be effective in destroying any ASPS cells that may remain after the gross removal of the tumor, but since ASPS is unfortunately notoriously radiation resistant the pouches may not be effective. It will be important for you to further research and discuss this with the doctors and to weigh your decision based on documented data that radiation pouches have proven success with ASPS as well as the potential implications, the possible risks, and the side effects of the radiation pouches. I am so grateful that your daughter's bone scan was clear . I continue to urge you to insist on a brain MRI ( NOT just a brain CT which is inadequate to find ASPS brain mets at the smallest most treatable size). Take care dear MJ, stay strong and pro-active, hold tight to continued Hope, know that you are not alone in this difficult battle with this extremely rare disease which those of us on this Board all share, and keep in touch as you are able. With special hugs and caring thoughts, healing wishes, and continued Hope, Bonni

[Vega343]

Surgery for prairie (our daughter) has been moved up to 21. September, we are so happy about that. That is the upcoming Monday, and we will meet with our oncologist to discuss next steps next week as well. He has consulted with the Dana farber oncologist and hopefully has developed a good treatment plan for us. They are prepping her body to receive radiation should we choose that after surgery, which means he is putting in a mesh sling to hold up her intestine out if the way for 3-6 months and leaving titanium markers at specific places they may want to target. More to come next week after we get this thing out! We will also do the brain MRI next week post surgery when she is up to it, although of course he doesn't think there is anything there (but come on, how would we know?). Thanks for all the advice, I feel confident about the surgery and our oncologist since we have the second and third options from md Anderson and Dana farber (thanks for pushing me to do this, because I wasn't comfortable before).

[Bonni Hess]

Dear MJ, I am so grafeful that things are moving forward in a positive direction with dear Prairie's surgery, brain scan, and post op treatment. I know what an extremely stressful and anxiety filled time this must be for Prairie, you, and your family as you prepare for Prairie's surgery on Monday. I am glad that you have confidence in the doctor which is so very important and will provide comforting reassurance to you that your precious little girl is in good hands. Please know that I will be right beside you in heart and thought on Monday while you await the completion of the surgery in the family surgical waiting room, and my most positive thoughts and very best wishes are with all of you for a very good and successful outcome to the surgery. I will be anxiously awaiting your update when your time and the situation allow. Take care and keep in touch as you are able. With deepest caring, healing wishes for dear Prairie, love, and continued Hope, Bonni

[MartinBube]

Hello

My name is Martin and I am ASPS patient my self.

Just read through your story and I would not say anything more that the peolpe already have written.

Very good that you anticipated the surgery and i would only say STAY STRONG and the battle goes on. Many of us have passed through the same some worst some better but we must never give up

good luck for the surgery

[D.ap]

Dear MJ

Our prayers and thoughts coming your way for the surgery Monday!
Much love
Debbie and family

[Vega343]

Thank u Bonnie, Debbie, Martin, and any other followers. Means so much to have you involved on this journey.

[Vega343]

The surgery went very well! Primary tumor was softball sized, fully removed with no margins in some places due to proximity to vaginal and rectal walls - but no colostomy. He did set titanium markers to assist in radiation if we choose that after the pathology comes back.
We will do the brain MRI this week, as well as further treatment plan development tomorrow.
Thanks for your support!

[D.ap]

Mj and Family

All our hugs and wishes for a blessed nights sleep coming your way before knowining margins GOOD!!
Years to come BUT need to keep nose to grind stone says grandma.

All our love
Debbie and family
Including the sleeping side of the world ASPS family
PS
You go girl...ALL OUR LOVE

[Vega343]

There is no "like" button... Thanks Debbie!

[D.ap]

Thanks for the like Mj

I hope Prairie is feeling well , better today

You all must feel exhausted

Was Prairies procedure performed non invasive ?
I hope with proper management she is able to feel rested

The biopsy will give you all a good look see to what had transpired in the 9 years that the ASPS had been growing
Mitopic rate possible invasion

Our son Josh and wife have a daughter born 2 years after Prairie so we are very much interested and connected with her care Too young Doggone it !

Love
Debbie

[Bonni Hess]

Dear MJ, I am so sorry to be slow in responding to your VERY GOOD!! news update about the success of precious Prairie's yesterday's primary tumor resection, but I was away from the Board due to an emergency root canal. I am SO grateful that the large pelvic tumor was able to be completely removed without necessitating a colostomy or damage to pelvic area organs. I am holding VERY tight to Hope that the pathology results will confirm that there are no residual ASPS cells despite the lack of good margins adjacent to the tumor site. I Hope that dear Prairie is resting and recovering well with any post open pain she may have being well controlled. I sent you a Private Message on this Board on Sunday with suggestions for Prairie's pre and post op experience in terms of the importance of you or a family member being right there with her throughout this difficult experience which must be so frightening for her. When your time, energy, and the situation allow I will be anxiously awaiting your next update regarding Prairie's recovery status and the results of the tumor pathology report, her brain MRI, and future treatment plans. In the meantime, please give your brave little girl and yourself gentle hugs from me and know that I am sharing the great relief and joy of the successful removal of the evil ASPS tumor from Prairie's precious young body. Heart to heart with special caring thoughts, healing wishes for dear Prairie's speedy and full recovery, much love, and continued Hope, Bonni

[Vega343]

Hi all. Re-reading your messages overwhelms me at your caring thoughts and involvement. Wow.
Update: P is recovering well from surgery, what a trooper. Thanks for the message Bonnie, we certainly stayed in the room and the accommodations aren't bad. They are great at children's, really amazing.
She has a drain line in coming out the side of her bottom so that has certainly been a challenge, but hopefully it will be removed Tuesday 29sep, but we have been home since Wednesday. We spent an hour and a half with our patient oncologist, and thought through next steps. I'm interested in all your feedback:
1) knowing they didn't get margins, we are planning to pursue radiation at the site to the extent of minimal long term risks to prairie. Next appointment tbd.
2) brain MRI did show 4 (nerd candy sized) mets in her white matter. A set back, but probably not a game changer. Non operable as small as they are.
3) rescan pelvis, lungs and brain at 3 months post first lung scan, in November. See what they are doing since last.
4) start some type of systemic treatment in November to see how she and mets react. 3 mo interval on scans. Start with drug we know the most about (probably sunitinib ) and go from there, knowing there are others we could try including the clinical trial cednirinib.
5) before November, research surgical options for lung mets, including dr. Rolle and Sloan Kettering. The mets haven't been counted or measured, maybe 50 per side with 10 large being a cm each. Our onc. Isn't planning to detail this out, should he? Otherwise, I can do it or my sister.

Once we find out surgical options and have the rescans, we will evaluate the best path, a lot being up to me. I wonder if we should do any lung surgery first, then systemic, or the other way around? Esp. Given the brain mets, I hate to wait for months for recovery from each thoracic surgery should those options exist.
We get pathology back and have appointment w onc. On Tuesday 29sep. Thanks for any info! Really starting to just love you all so much with your great experiences lending us a hand and your time spent sharing. For example, when our onc. Wanted a brain ct I had the knowledge to insist on MRI.
We started a Facebook campaign to get P to meet taylor swift at a concert we are going to on October 9th. If your on fb, give me a shout and I can add you to care private care page and you can share our campaign!
I am Mary Jo brolhorst, in lincoln,ne, project manager
Mj

[D.ap]

Mary Jo , Prairie and Family
Great news that you are home!
Hugs to you and I will write more when I find my glasses.

Love
Debbie