Brinley from Montana - Dx June 2012 at age 2

[Amanda]

Hello
I applaud your proactive care of your lil baby girl! Never ever change! Please! It is what will keep her healthy

Oooo this makes me mad the negative attitudes and fear spread by some Oncs! This statements made like this cheese me off!
*We were told it could be our next scan that is positive for new growth or one 15 years from now.* Yes, in a 15 year period it does pop up an it is found when it does do that *When an if.. not definitely* it is caught early thru the scans. maybe point that out?
There are babies that i have read about an they are fine! No signs of ASPS still an they were infants! One had it on his or her tongue :/ Its been a long time i don't remember exacts!

If this attitude continues and there is refusal to give careful an competent care medically of your baby find a better onc...
Or maybe have them read here! Other Oncs do read here and they learn what we are going thru medically an personally. they are good oncs
Its called practising medicine tell them to practise it...

Never change you are a wonderful mommy! <3

[D.ap]

Debbie,
This is still such a learning process for us....unfortunately our pediatric oncologist and I don't EVER seem to be on the same page. I fought like crazy to get him to do a full body scan on her last April. He very much thought I was being fanatical and asked, "where will we draw the line?" Brinley had never had a full scan done, she had only had scans of her abdominal, lungs and one brain scan at that point in time. He wants to only MRI her abdominal (without contrast) and x-ray her lungs every 6 months on our visits to Seattle Childrens. I feel that his thinking is that we found her tumor in such an early stage and since our surgeon had the foresight even before knowing the diagnosis to take all the margins that we are going to be fine! One of our fist visits with a doctor after Brinley's surgery we were told:" it's not if - but when that we will find a new tumor. We were told it could be our next scan that is positive for new growth or one 15 years from now. I don't ever want to be that parent that is burying my daughter because I did not do my part to keep her as healthy and stay on top of finding any tumor reaccurance should there be another. So your question is the MRI good enough for resolution of small definition? I hope and pray so. I am taking my doctors lead and trying not to anger him by questioning his judgement repeatedly. I am always greatly appreciative of any/ all info that is passed our direction. I know that we need to take to heart that since she will need scans for life they do want to minimize her radiation, but are we doing enough to keep healthy? Any insight you or others have is greatly appreciated especially since we are headed over again next month. Thank you again for your words and care for our Brinley. Wishing you and Joshua all our best.
Sincerely,
Crystal, Brinley and family

Crystal

Hello. I am so sorry that you have had this experience.
Your primary Oncologist in my opinion needs to listen to his patients parents. Asking where do we draw the line is unacceptable.
We as a family have interveiwed 4 doctors and have found it to also be very disturbing how unaccomidating some have been to our needs.
We are now recieving scans at what we consider an acceptable schedule.

Bonni has given you what I assume are pediatric oncologist to talk to and I would persue those leads. It doesn't hurt to talk to them as they may have a better handle on an ASPS patient.

Could you remind us how big the tumor was and where exactactly it was located?
Write when you can

Love
Debbie

[Bonni Hess]

Dear Crystal,
I am so sorry, frustrated, and upset by Brinley's oncologist's seemingly pompous attitude and him intimidating you from being able to request the scans which you feel are important to adequately monitor Brinley's disease. As a parent of a patient who is too young to advocate for herself, you have a right to discuss your concerns with him and to request scans, and he should certainly not be angered by your desire/need to do so. If Brinley's pediatric oncologist is still Dr. Hawkins, he should certainly have a better knowledge and understanding about the critical importance of regular and adequate scanning to monitor and manage ASPS since he was ASPS patient Adam Beatty's oncologist until Adam became too old to receive pediatric oncology care at Seattle Children's Orthopedic Hospital and had to seek oncology care and treatment elsewhere. Dr. Hawkins may be a very good and highly respected doctor, but we personally questioned and were concerned about the lack of adequate scans and monitoring that Adam received while under his care and the delay in diagnosing tumor growth that occurred as a result. Because of Brinley's very young age, I of course understand the concern about radiation exposure from CT scans, but I am also concerned that Dr. Hawkins is only monitoring her lungs with chest X-rays and her abdomen with abdominal MRI's without contrast which are both inadequate to find any new tumors at the smallest most treatable size. Radiation exposure from CT scans poses a real dilemma, but unfortunately scanning is the only way to ensure that tumors are found before they become symptomatic and possibly too large to successfully treat. It is my greatest Hope that due to Brinley's very young age at the time that her primary tumor was found, that her disease was caught in time to prevent any metastatic spread. However, due to the unpredictablity of this initially indolent disease, it will remain critically important to continue to vigilantly monitor it with regular and adequate scans to ensure that any possible new tumors are found and treated, and to not become complacent about it since, to my knowledge, there is currently no permanent cure for ASPS and it can progress at any time even if it has been stable for a lengthy and sustained period of time. I encourage you to request/insist that Brinley receive a chest CT and abdominal MRI WITH contrast at least once a year. My most caring thoughts and very best wishes will be with precious Brinley and your family for good scan results from her upcoming scans in April and I will be anxiously awaiting your next update. Take care dear Crystal, travel safe from Montana, and come visit us in Washington or Montana when you can.
With warm hugs, caring thoughts, healing wishes for dear Brinley, special friendship, and continued Hope,
Bonni

[babbittgirl]

Searching for information- Please help if you can give insight! We just had Brinley's scans yesterday ( April 18th) It was just a bad day from start to finish.... We woke up early and Brinley was so good about not eating or drinking at the hotel- we headed to the hospital and arrived about an hour early so I decided we would wait for a few moments in our jeep. Brinley proceeded to climb up front with me and discovered her fruit loop snack pack on the center console before I could stop her she popped a blue fruit loop into her mouth! No big deal...or so I thought when I stupidly admitted it to the nurse. UGGGHHH! Then due to my honesty Brinley had to wait another 6 hours without eating to get her MRI. Turns out once again only her belly was scheduled to be scanned not her lungs or brain (so the battle rages between mother and oncologist)and an X-Ray of her lungs was ordered. They finally get her scan done at 4:45pm and her doctor agrees to come to radiology to see us to save everyone some time. He comes in looks at Brinley who is still sleeping, answered a couple questions I had - and said,"Everything looks great we'll see you in 6 months." As Brinley is waking from anesthesia a radiologist comes into the room to ask us questions about a recent injury to Brinley's right arm...? We had no injury to report. No noted swelling, bruising or complaints of pain nor any recent falls that we can recollect. She examined Brinleys arm and asked if had ever been fractured/ broken? No again, never. She then explained they were seeing abnormal cell structure both in the marrow and on the outside of the radius bone which would be indicative of a break/ fracture although none was apparent on the scan. She then left to take another look and call our oncologist back. By this time our nurse arrives asking why Brinley is not dressed and blatantly tells us it is almost 5pm and she must leave then as the department would be closed. Our doctor soon arrives with a monitor and tells us how surprised he is and gives a job well done to the radiologist for looking at not only Brinley's belly in the scan but also her arm which happened to be in the scan. (Grrrrrrrrrr makes me angry of course they should be looking!!!!!) And yes I am so grateful for her looking! Anyway what they see is very clear on the scan the marrow is appearing white and the outside if the bone in that area also appears a thicker white. The other arm is perfectly normal. Her previous scan shows this arm was then normal. Since it was so late in the day, the department was closing, and Brinley was now awake they said there was nothing more they could do then. He said definitive proof would be to do a biopsy, but that would be difficult to find the exact spot, it would also be very painful since she was awake. He suggested we follow up with Brinleys pediatrician back in Montana for x-rays to look at the site of concern.
What do you all think???? For those of you whom have had it appear in bone... does this sound indicative of new growth? I will be calling our pediatrician first thing Monday morning! Thank you in advance for your input!
Sincerely a scared mommy,
Crystal

[Olga]

Crystal, first of all false positive abnormal finding happen so do not assume it is an ASPS met until it is proven. Brinley is actively growing now and there might be some growth related abnormalities? Was it found on an MRI scan or on a X-Ray? Was the MRI scan done with the contrast? Probably more MRI could be done, also did she have a bone scan yet? If not, it might be a right time to get one. Probably the oncologist could consult with the other places where more pediatric ASPS is seen as how the ASPS bone mets would appear in the younger kids.

[D.ap]

Crystal

I am so sorry and shocked that an oncology floor would be so caustic and unfeeling in their dealings with Brinley's care.
I would hope after you get a second opinion on the scans that the above oncologist be let known how insensitive the whole experience was and then move forward to improve future dealings.

My question in addition to Olga's is did you have a difficult delivery of Brinley?
Could the arm injury be a result of that delivery?

Anyway what they see is very clear on the scan the marrow is appearing white and the outside if the bone in that area also appears a thicker white. The other arm is perfectly normal. Her previous scan shows this arm was then normal.

Is it possible prior scan could of missed the area on the scan? I assume it was the PET scan? or was it a MRI?

I hope Monday comes soon for you as I know us moms worry enough for everyone.
Take care and enjoy this beautiful Easter Sunday.

Love
Debbie

[Bonni Hess]

Dear Crystal,
I am sorry to be slow in responding and sorry that I missed seeing you and dear little Crystal when you were in Washington, but I flew to Montana on Friday night (I probably flew right over you when you were driving!) and just now got a chance to get back to the computer. I am so sorry for all of the concern, stress, and anguish that has been caused by Friday's MRI finding of "abnormal cell structure both in the marrow and on the outside of the radius bone" of precious little Brinley's right arm. I am also sorry and frustrated about the inexcusably rude treatment that you received from the department nurse at the highly regarded Seattle Children's Orthopedic Hospital which is supposed to be a caring and compassionate pediatric facility, and by the continued inexplicable and unacceptable refusal of Dr. Hawkins to provide adequate and appropriate scans to monitor Brinley's ASPS. I applaud and am very grateful to the radiologist for going beyond the scope of the ordered abdominal scan to notice, report, and pursue additional information about the area of concern in Brinley's arm. We had a similar experience when Brittany's chest CT scan nine years ago inadvertently went low enough to show the top of her liver which shockingly revealed a liver met which dangerously would have gone undiagnosed until it became symtomatic because at that time Brittany was only being followed with regular chest CT's. I agree with Olga that there may be another more benign explanation for the appearance of abnormal cells other than an ASPS bone met, and I also feel that it needs to be further evaluated with another scan before an invasive biopsy is done. I personally think that the X-ray that Dr. Hawkins recommended Brinley get through her pediatrician in Montana is inadequate, and that a full body bone scan and possibly another MRI with contrast should be done as soon as possible. I am extremely upset that this was not ordered by Dr. Hawkins immediately to determine the nature of the area of concern once it was reported by the radiologist, and that you were told there was nothing more they could do because the department was closing! I am stunned that Dr. Hawkins did not request that you extend your stay until more tests could be done, and that he apparently does not plan to see Brinley again for another six months! There are two points that I would like to make regarding this frustrating situation. As I have told you previously, I strongly recommend that you find a different oncologist who is more cooperative in complying with your valid requests for adequate scans, more thorough in his monitoring of Brinley's disease, and less nonchalant about his treatment of her. Dr. Hawkins should... be more aware about the unpredictable nature of ASPS and the need for more thorough scans having previously treated ASPS patient Adam Beatty. However, based on Adam's experience and my personal observations, I personally think that mistakes were made by Dr. Hawkins in Adam's care in regard to monitoring Adam's ASPS with proper scans. I also suggest that you no longer schedule Friday appointments since if there is an issue or concern, you then have to wait through the weekend, and possibly longer, to get any additional tests or scans that may need to be done. In our twelve and a half ASPS journey with Brittany, we have learned to never schedule Friday or late afternoon scans and follow-up appointments, and to never schedule Friday or late afternoon surgeries if possible because hospitals have limited staffing on weekends, and the regular doctors are seldom available and the patient is left at the mercy of the intern or resident physician on staff who usually has no personal knowledge about the patient and very little time to address any problems or issues. I Hope that you will be able to pursue and obtain a full body bone scan and/or arm MRI with contrast as soon as possible to obtain more definitive answers to the concern that Friday's MRI has raised. Once this issue is addressed and resolved, Hopefully with a benign and non ASPS related diagnosis, I Hope too that you will be able to find a new oncologist who will schedule a chest CT and brain MRI for Brinley to asssure that there are no mets in those areas. Vigilant and adequate scanning are critically important in successfully monitoring and managing this disease, and Brinley needs an oncologist who knows and understands this, and cooperates with the scheduling of appropriate and regular scans. I Hope that you and your family are somehow able to enjoy this Easter day despite the concern you have in your hearts, and I Hope that tomorrow will bring some better news and answers for you. Take care dear friend.
With special Easter hugs and much love for you, precious Brinley, and all of your family, deepest caring, healing wishes for dear Brinley, and continued Hope,
Bonni

[babbittgirl]

Thank you all so very much for your thoughtful responses! To answer a few of your questions:
This was an MRI without contrast of her belly but due to her small size (age 3) more of her body is shown in the scan. No I did not have a difficult delivery of Brinley... and the previous scan showing that same arm appeared normal when they pulled her record. We have yet to have a bone scan of Brinley or a PET scan. She has had one CT scan right after the removal of the tumor and then MRI's and lung X-Rays every 6 months. We have had one MRI that has included her brain, arms and legs completely, and the rest have been belly MRI's that show her lungs and arms in most scans. It is so very difficult to get Dr.Hawkins to order other tests. I believe that his mindset is still that we caught her early enough that she will not have a recurrence. When I have spoken to two other doctors they all seem to think Dr.Hawkins is best suited for Brinley's case due to his experience with and age of his previous ASPS patients. I do not want you to think Dr.Hawkins is a bad person, I do want you to know that he will always take time to answer my questions and is courteous. I think he is probably overworked and has critical patients to worry about and my Brinley for all intensive purposes is a fairly healthy 3year old girl. (Which is how I want to keep her!) I will follow up with her pediatrician first thing Monday morning and see where we can start....I will print your responses to show her as well. I definitely want to be proactive and figure out what this is and a plan of action as soon as possible.
Thank you all again for your information...I will try to keep you all posted and I will also check back in for any new info you all may have to share.
Sincerely,
Crystal, Brinley and family

[Jorge]

Hi Crystal,

I'm so sorry about your experience in the hospital and understand you must have a anxiouts weekend.
Bonnie has givin very detailed and thoughtful advices. I only want to add one to Bonnie's--X-ray is not enough for the lungs, it can't detect the tiny mets if there is. You'd better discuss this again with the Doctors.
Take care, Crystal. Things probably not so bad.

Lynette

[Bonni Hess]

Dear Crystal,
Thank you for the additional information. My special thoughts and very best wishes are with you today as you meet with Brinley's pediatrician to try to more definitively determine the nature of the area of concern on Brinley's arm and what further diagnostic tests need to be done. I want to strongly caution you against immediately proceeding with a biopsy because biopsies can potentially seed tumor cells if there is a malignancy. When Brittany's chest CT revealed a suspicious lesion in her breast several years ago her doctor immediately ordered a biopsy of the lesion which we firmly refused to have Brittany undergo due to our concerns about seeding tumor cells if the lesion was an ASPS met, even though at that time we were unaware that ASPS could metastasize to the breast. Sadly, through our almost 13 years of ASPS experience with Brittany's widely disseminated disease we have since learned that ASPS can metastasize almost anywhere in the body. We insisted that the breast lesion be resected instead of biopsied, and it was successfully surgically removed in an outpatient procedure. Unfortunately, the lesion did prove to be an ASPS met, but we were very thankful that we had rejected the biopsy. Hopefully none of this will be applicable to Brinley's situation and it will be determined through more definitive scans that the area of concern on her arm is related to a benign cause, but it is information which is important for all ASPS patients and their families to know in order to be as knowledgeable and pro-active in treatment decisions as possible.
With special caring hugs, postive thoughts, healing wishes for Brinley, and continued Hope,
Bonni

[Amanda]

Hello
I am holding hope that she will be disease free for life such a lil one and so hard i am sure for the family!!! She has a great support from what i have seen here so blessed she is
If it were myself i would ask the scans be done to give you peace of mind an rest...
They can't tell you 100% she is free of this devil no one can. that may also help them to decide to do these scans! I think if you tell the doctor simply it is to help you rest an to make 100% sure for the next year they may do this for you...


I wish the best to you and your whole family an that wonderful lil girl!
You are all in my prayers <3

[jcs2007]

First, let me say how sorry I am that you are having to deal with this crazy sarcoma with your daughter at such a young age. We had something similar happen with our son so we followed up with a bone scan and X-rays with our orthopedic oncologist. Best wishes in your journey for treatment for your little one.

[Bonni Hess]

Dear Cindy,
I am so sorry to hear that you had a similar concern with dear Sam. What was the outcome of his bone scan and x-rays with his orthopedic oncologist? Hopefully it was determined to be a benign situation and whatever it was has been successfully resolved. I am anxiously awaiting an update from Crystal regarding the status of dear little Brinley's situation and what additional scans, if any, have been done to more definitively determine the nature of the area of concern.
With special caring thoughts and continued Hope,
Bonni