Kat's daughter from Australia - Dx Jul 2013 at 7 yrs old

[Olga]

Kat, the oncologist means that in ASPS the brain mets are usually preceded by the lung mets. In generally I agree on that point as it is supported by the publications and our community experience - all people with the brain mets had their lung mets first - but there are known cases (and also published on the pubmed) where the brain mets in ASPS occurred without any known lung mets first. But it is very rare so probably as long as there are no lung mets she should be fine without scanning of the brain, but she will not have an advantage of having her clear base line MRI scan taken to be able to compare to it if needed in the future.

[D.ap]

Kat

When you get a moment could you explain what PT Annika is doing to strengthen her arm?
I'd be interested to know .
Also on the subject of brain scans don't let the protocol be that a scan should be done ONLY when symptoms are present. The name of the game is to discover them WHEN they are at their smallest so a plan can be in place to remove them . At this time there is no cure for ASPS ONLY treatments such as surgery
Thanks in advance
Debbie

[Kat]

Hi Everyone,

Thanks for the comments and advice so far. Olga, my research has backed up what you have said about brain mets usually only appearing after lung mets and this has been the justification for not doing a brain scan as explained by our oncologist also. I will try justifying the scan in terms of providing a baseline for future reference if needed and see if this helps?

Debbie, in answer to your questions about Annika's PT for her arm, we are seeing a physiotherapist (she is the mother of my daughter's best friend which makes it easier) who has provided Annika with a range of exercises that target the triceps and are intended to build strength over time. One such exercise is called a "skull-crusher" it is a common weight training technique for the triceps. You lie on your back and hold a weight in both hands with your arms extended straight up. You bend your arms at the elbows and lower the weights toward your head with your palms down then back up again. Annika is obviously not lifting heavy weights to do this, we have filled two ziplock bags with 500 grams ( 1 pound I think?) of rice and just add more rice as she gets stronger. She also has a theraband which is like a long wide piece of stretchy rubber that we can wrap around poles, chairs and even place under her foot to do a variety of strengthening exercises. She also does body weight exercises like tricep pushups on the wall and is building up to dips (we are not there just yet). We try to do the PT exercises at least 3 times a week and in addition we do other fun, active things like walking, running, swimming, riding a scooter and our own version of stretching/yoga.

Best wishes to all and kind regards,
Katrina

[D.ap]

Kat, Anika and family

Happy Sunday!
Thanks for the update and description of Anika's workout
We have a PT in our family , our niece ,and she said the regiment looks excellent to her
She works in a private rehab about 20 miles from us and she and her husband have two boys , 9 1/2 and 7
I was especially glad to read about you incorporating yoga into your exercises Josh and his daughter and wife do yoga
It is a very important tool in both exercising a persons body and mind to help create the most healthful environment for healing AND combating this insidious disease.
I would work your way up to asking for the MRI for brain survailance
Choose your battles as you need to conserve your energy etc for combating later
Have a beautiful day Going to be 65 F in our area

Love
Debbie

[Ivan]

Kat, if she is not in discomfort, you can do the triceps exercises every day. That will give faster results.

[D.ap]

Kat

Great news with the clear scan on Anika's arm!
I understand that there are not any tumors in Anika's lungs and I don't know that the lungs are secondary to the primary..then possibly the brain. What I do understand are scans will be the most important tool as they see tumors at their smallest size. As I understand it the scans can show abnormalities and are used to create a baseline for further scans that will need to taken for the rest of our kids life's
I am sure others will also contribute an opinion as well
Take care
Debbie

Dear Kat and family

Happy New Year to all of you
As a family we are learning more and more about ASPS..It's been a year and almost 4 months.
I hope that Anika is improving with each day!

In reference to the scans, specifically the MRI, I would push for the bone scan, CT scan and MRI to be put on a schedule as soon as comfortably possible. The reason being that the scans at this time give what is referred as a baseline picture, if you will. Those baselines are so important to have before symptoms POSSIBLY show up.
I don't know if you've been able to view a scan with the radiologist, but it is so important to have a beginning so IF tumors show up they will be obviously different to the radiologist and then too to your doctor or better yet your surgeon who we have found to be a better scan reader.
Ask questions like what are the slice measurements as the tumors are small and indolent--slow growing so if the slice is too big they won't been found till they are 5 mm to 8 mm? Ivan can probably help us here.

Anyway, wanted to say hello and check in with you all
Much love
Debbie

[Kat]

Hi,
Just checking in. Annika has just had her second round of post-surgery scans (we are now 6 months after diagnosis). She had an MRI of the primary site and a CT scan of her chest (they did a fine res of 0.5mm). Both scans were clear! Hope that the new year brings much good health, good news and good times with family and friends to you all.
Katrina xx

[D.ap]

Kat

Great news on Annika's scans
How's her arm healing. ? I hope this day finds all of you more hopeful and less anxious

Love
Debbie

[D.ap]

Ps. In July or so I would ask for an MRI of Annika's brain. It would give you all a baseline to compare on a yearly basis for ?? years. Unfortunately this disease is a lifetime commitment

Debbie

[Bonni Hess]

Dear Katrina,
Thank you for sharing this wonderful and very encouraging news I know that you and your family must be celebrating with great joy and relief, as I am right along with you . As you move forward on this journey, remember to remain vigilant with all of the scans including chest/abominal/pelvic CT's at least twice a year and a brain MRI and full body bone scan once a year. Please give yourself and your courageous little Annika happy hugs from me, keep in touch with the Board as you are able, and know that my happy thoughts and wishes are with you.
Sharing your good news with much happiness, special caring thoughts, healing wishes for dear Annika, warm friendship, and continued Hope,
Bonni

[Kat]

April scan clear!
We went back to SCH (Sydney Children's Hospital) and Ronald MdDonald house in April for our MRI. This went well with Annika being her normal cheerful tough self. Our oncologyst was away however and we went home before we got the results (we live 5 hours away). After some chasing, we were told that it looked OK, but one of the oncology team would call if there was a problem. All a bit stressful!
Annika is enjoying school and is doing well. She is gradually improving her handwriting and she is working hard on her physic.
We go back for our MRI/CT in July.

Damian (Annika's Dad)

[Bonni Hess]

Dear Damian,
Thank you for your thoughtful update with the wonderful news of dear little Annika's good scan results from her April MRI I am so happy for all of you and share your great joy and relief . From your update I assume that the only scan that was done in April was an MRI of Annika's primary tumor site on her arm? Will a chest/abdominal/pelvic CT be done in addition to an MRI when she has her July scans, or only a chest CT? If only a chest CT has been scheduled I encourage you to request a chest/abdominal/pelvic CT for more complete monitoring. I am encouraging you to request more than a chest CT because we had the experience with Brittany when she was only receiving regular chest CT's and a liver met was inadvertently seen on the chest CT because the chest CT caught the upper portion of the liver. However, had the liver met been lower and the chest CT had not gone low enough for it to be seen, and had it not been noticed and reported by the observant radiologist, it would most likely have gone indiagnosed until it became symptomatic and possibly too large to successfully ablate and destroy as we were thankfully able to do since it was found at a relatively small size. Also, since you said that you were just "told that it looked OK", if you haven't already done so I suggest that you request a written copy of the radiologist report and a CD copy of the scan for your own personal records so that you can pro-actively personally monitor and compare scan results which is so very important in managing and fighting this disease.
I am so grateful that dear Annika is enjoying and doing well in school and regaining arm and hand function through her conscientious physical therapy exercises. She truly is a courgeous little girl and I know how very proud you must be of her.
Take care Damian, enjoy a beautiful Australian summer, know that precious Annika and your family are held very close in my heart and my most caring thoughts, and I will look forward to hearing continued good news from Annika's July scan results.
Celebrating Annika's good scan results with happy hugs for Annika, you, and Katrina, special caring, healing wishes, and continued Hope,
Bonni

[Jorge]

Congratulations!
Thanks for updating the good news.

Lynette

[Amanda]

Yay thank you for posting such wonderful news!

[Kat]

Dear Damian,
Thank you for your thoughtful update with the wonderful news of dear little Annika's good scan results from her April MRI I am so happy for all of you and share your great joy and relief . From your update I assume that the only scan that was done in April was an MRI of Annika's primary tumor site on her arm?

Yes that's right, we do the arm MRI every three months and a chest CT six monthly.
Will a chest/abdominal/pelvic CT be done in addition to an MRI when she has her July scans, or only a chest CT?

Only the chest, our onc seems to be confident that any mets will start there. Do they always follow this pattern? I can't find any cases to contradict this, but it does concern me that he doesn't want to do a larger area CT unless there are lung mets. In fact he has suggested yearly CT and six monthly X-ray, he is concerned about Annika's radiation load....

If only a chest CT has been scheduled I encourage you to request a chest/abdominal/pelvic CT for more complete monitoring. I am encouraging you to request more than a chest CT because we had the experience with Brittany when she was only receiving regular chest CT's and a liver met was inadvertently seen on the chest CT because the chest CT caught the upper portion of the liver. However, had the liver met been lower and the chest CT had not gone low enough for it to be seen, and had it not been noticed and reported by the observant radiologist, it would most likely have gone indiagnosed until it became symptomatic and possibly too large to successfully ablate and destroy as we were thankfully able to do since it was found at a relatively small size.

Did Brittany have lung mets first?

Also, since you said that you were just "told that it looked OK", if you haven't already done so I suggest that you request a written copy of the radiologist report and a CD copy of the scan for your own personal records so that you can pro-actively personally monitor and compare scan results which is so very important in managing and fighting this disease.

We always get a copy of the report and scan on DVD.


I am so grateful that dear Annika is enjoying and doing well in school and regaining arm and hand function through her conscientious physical therapy exercises. She truly is a courgeous little girl and I know how very proud you must be of her.

We are!


Take care Damian, enjoy a beautiful Australian summer,

Today is the first day of winter! It's pouring with rain as I type! They are hoping for good snow on the mountains for the ski season.

know that precious Annika and your family are held very close in my heart and my most caring thoughts, and I will look forward to hearing continued good news from Annika's July scan results.
Celebrating Annika's good scan results with happy hugs for Annika, you, and Katrina, special caring, healing wishes, and continued Hope,
Bonni

Thanks for your kindness and support.

Damian