Journal

Journal entry by David Manser

Well, for those of you keeping track, it has been more than a day since my promised update. I apologize for not writing this sooner but honestly we got busy and I forgot.

Anyway, Auni's recovery is going very well.  She was in the hospital for two weeks after surgery and then we got to come home.  She is almost 6 weeks since surgery now and will get to start putting a little weight on her leg in the next couple of days with physical therapy as she strengthens her muscles and learns to walk.  Follow up trips to the doctors for various scans and routine physical therapy  is taking up Aunicka's days unless she is hanging out with friends or her horse.

The next step though will be rapidly upon us. We will be heading to Denver in the next few days to plan the next treatment steps for Aunicka and the simulation mapping phase of her radiation therapy.  We will come back home for a week and then Laura and Aunicka will be in Denver for 5-6 weeks for radiation therapy. The outpatient therapy is daily, 5 day a week, for 5-6 weeks.  She will also be continuing her physical therapy there. Fortunately Laura has some family in the Denver area which will make the entire process go easier.

Thank you all for your kind and supportive words, and prayers. It means so much to all of us.
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Journal entry by David Manser

The surgery is done and was a complete success. It was very long, she was actively in surgery for a little over 8 hours. She just came out of the recovery room and has gone to sleep for the night. We are about to do the same. I will post a longer update tomorrow. Thank you all for your prayers and support :)

Journal entry by David Manser

The next major milestone has arrived. We are heading back to San Francisco today for Aunicka’s surgery! She’s been on her targeted chemo for two months and while there has been no new growth the pain has never been fully under control. For these reasons the doctors have moved her surgery up to help literally get her back on her feet again.

The surgery will take place tomorrow, May 29th, at 9am. It will be around a 5-6 hour surgery as they remove the tumor and infected femur and replace the bone with an adjustable prosthetic femur. We have lots of confidence in the surgeon and staff, but as with any procedure of this type, please pray for Aunicka and the surgical team.

I’ll post another update tomorrow after the surgery to let you all know that it is done.

Journal entry by David Manser

Good morning. It’s been a while since our last update, about a month in fact. Since then some things have been finalized and some patterns established, life is starting to take on its new “normal” form. We went to Denver and met with Aunicka’s new team of doctors. We were really impressed with the team and the facilities. The hospital itself is relatively new and was built with a focus on the comfort of the children. The rooms are bright, well designed and don’t feel at all like a hospital. The doctors were well informed and personable, but on top of that they spoke to Aunicka, not about her. We are very comfortable and confident working with them.

They started Aunicka on her targeted chemotherapy which is a once a day pill that she can take from home. Because this medicine is still chemo she needs to be closely monitored while on it. This means weekly checkups, lab work, blood pressure, etc.  Fortunately this follow-up can all be done locally with her Pediatrician. The trips to Denver that we had anticipated taking weekly will only happen every other month. This has been a big relief for Aunicka and the entire family. We have been able to settle back into the “normal” routine of life.  Aunicka has a tutor coming from the school district to work with her through a program called Homebound a few times a week.  Her tutor comes to our home and the work is set at a pace that Aunicka can handle and she is really enjoying it.  

Of course, there is still the limb salvage surgery to contend with. Mid summer is the current best guess for the timeline, but that could change based on the efficacy of the chemo. The surgery will be performed in San Francisco by her current surgeon and will involve around 3 weeks of treatment and recovery. We’ll let you all know more as this time approaches.

In the meantime we would like to once again thank everyone for your love and support. We couldn’t imagine how much more difficult this journey would be without such an amazing community around us. In fact, in case you don’t already know, our awesome community has rallied behind a Dodgeball Tournament Fundraiser that was arranged by some of the very caring people at our church, Common Ground Carson. The amount of effort that they have put into making this event a success is beyond my comprehension! They have selflessly spent countless hours organizing a truly spectacular tournament and we can’t thank them enough. If you have time, stop by Douglas County Community and Senior Center tomorrow, Saturday April 7th, from 5pm – 8pm and check it out. There is a Dodgeball Tournament for all ages, although I think all the team slots are filled, a silent auction, gift baskets, raffles, food, etc. It will be a great family event.  It's free to come and watch! You can get more info at www.facebook.com/events/189092968408475/

Journal entry by David Manser

Good morning everyone, we have returned from Boston. We got in last night. It was a 15 hour trip from waking up in Boston to San Francisco airport and then driving home.We had two meetings while we were there. The first was with a pediatric oncologist and the director of experimental therapeutics and clinical trials. The second was with the orthopedic surgeon.


The first meeting presented a need for more specified care and experience for solid tumor sarcomas. There are a few doctors that specialize in solid tumor sarcomas, exactly what Aunicka has. The doctors that we met with in Boston are some, and while there is no doubt that they offer great services, it is physically too far from our daily life, family, friends, church and supportive community. Because of this they gave some other recommendations for equally excellent doctors and care that were closer to home. The pediatric oncologist that makes the most sense for us at this time is in Aurora at Children’s Hospital Colorado, just outside of Denver. They can meet all of Aunicka’s specific needs at this time. So records are in the process of being transferred and meetings are being set. Though we do not yet know the treatment specifics, this will most likely mean weekly trips to Denver for the foreseeable future.


At the same meeting we also discussed experimental therapies, or clinical trials. There are not many trials for this particular cancer, but there is one that may be available. Auni’s particular cancer will be tested and if it meets certain criteria she would be eligible. This means that if the standard therapy is not effective in stopping the growth of the cancer she would be given an experimental therapy that might work. There are a lot of variables in this direction of treatment that have no answers right now, but if things start to move this way we’ll keep everyone updated.


Lastly we met with the pediatric orthopaedic surgeon. We discussed Aunicka’s current surgical plan and current surgeon. The doctor at Dana-Farber had nothing but great things to say about Aunicka’s current surgeon and suggested that we stick with the current plan and surgical team. It was great to have the reinforcement that she has already been receiving top-notch care and will continue to do so. We don’t have a date set yet for the surgery, but as it comes near we will let you know so you can join us all in prayer.


In between all of this we did have a great time with some family in Boston. We had the opportunity to eat at some amazing restaurants, visit some historical sights, stroll through the museum of fine arts and in general enjoy the city. As a bonus we even got to experience a Nor’easter in the form of Winter Storm Riley. If you don’t know what that is, look it up, it was quite the experience! All flights were cancelled and we stayed two more days until the storm blew over.


While we did enjoy our time in Boston, it’s always good to be home. And I know I’ve said this last part a hundred times already, but we really do appreciate all of the support and help that we have received along the way. We couldn’t imagine go through this without the help of our family, friends, church family and community. From feeding our dogs, to preparing meals for our family; we thank you and love you all more than we can possibly express. As things progress in Denver we will let you all know, in the meantime thank you also for keeping us, and especially Aunicka in your prayers.

Journal entry by David Manser

We’re heading for Boston. The Dana-Farber tumor board met last week and contacted us. They are interested in meeting with Aunicka in person. We don’t know yet if they have an alternative treatment option for the lungs, but we will find out soon.


We are heading down to San Francisco to fly out non-stop to Boston. We will be meeting with two of the doctors one day and a third doctor on a few days later. As I said earlier, we’re not sure what they will have to say, but as we know more I will post it here.


Because we will have some time between meetings we are looking forward to spending some time seeing the city, the historical sights and Aunicka wants to go shopping :) Please pray for comfort on the long flights, good weather and a decisive outcome with the meetings.


PS - I want to shout out to Delta Airlines (I know they won’t read this, but I still feel it necessary.) They upgraded our tickets to the business class bulkhead and got us all sitting together at no additional charge. The representative on the phone was friendly, helpful and determined to do all that he could to make the trip comfortable. Thanks Delta!

Journal entry by David Manser

We’ve been home for a full 24 hours now and we can all honestly say, “It’s good to be home!” Aunicka has done really well getting off of the IV pain medication and switching to the oral medication. As a result of this she was discharged on Monday afternoon and we made it home late Monday night. She had a couple of her friends, Lauren & Rylie, come visit her on Sunday and Monday. Their presence really lifted her spirits and helped smooth the transition. They also did a great job of encouraging Aunicka to eat more :) We also want to say a HUGE thank you to Allen, Lauren’s dad, for bringing the girls to Oakland.  We all enjoyed the visit!


The next step; not that we distrust our doctors in Oakland, but we are seeking a second opinion from the Dana-Farber Cancer Institute in Boston. When you come across a cancer this rare no one can make claims to be an expert in dealing with it. The diagnosis, unfortunately, is not in question, neither is the resection of the femur. However, we would like to know the opinions of other highly qualified oncological teams about the best way to deal with the tumors in the lungs. This process is underway and we anticipate hearing from their solid tumor board by Wednesday, February 14th. At that time they may tell us that we need to fly to Boston for a few days to meet with them in person. They may want to see Aunicka in person as well. This is roughly a 6 hour flight. If it comes down to that, please pray for her comfort on the trip.


In the meantime we are working on figuring out what our new normal will look like. Laura spoke with the school about getting Aunicka setup for remote learning and she is also trying to establish a work routine that is flexible enough to handle sudden changes. We will have lots of follow-up appointments, imaging, lab work and physical therapy in the coming months.  Church and community members have started bringing us meals, which although I love to cook, is a MAJOR blessing :)


We are really looking forward to gathering with our church and small group this week! Thank you everyone for your support and love.


Finally on the topic of support, we had another community member and business owner approach us about hosting a benefit for Aunicka. Fawna, with Cutthroat Saloon & Restaurant in Markleeville, has set up a benefit on February 24th at 6pm. There will be good food with live music by The Blue Valley Band. Please, stop in before then as well to support this business.


Benefit for Aunicka Pierce

https://www.facebook.com/events/1997133380526115/

 

Journal entry by David Manser

Aunicka is currently in a lot of pain from the tumor. As the tumor in her femur has grown it has displaced some of the surrounding muscle and arteries. This cancer coupled with the fracture that will never heal causes severe pain that spikes unexpectedly. They are currently trying to get this under control with the idea of being able to send us home until the femur replacement surgery. Not that we doubt our doctors, but we doubt the ability of the medicines that we can use at home to be able to control her pain. So, they are working on that.


In the meantime, they have performed a brain MRI which came out clean :) They are also planning on performing a PET scan. If the schedule doesn’t change this scan will take place Friday morning. To any of you working in the medical industry, please do not take this the wrong way, but things in a hospital are on a completely different time schedule than elsewhere. Something can be scheduled, changed, adjusted, cancelled and rescheduled before you even know it. This has been Aunicka’s life for a few days.


Those of you that know Aunicka personally know that she has always been very thin and a very selective eater. This is working against her right now. She doesn’t have the weight in her body to be able to fuel it through the fight that she has coming up. Cancer puts the body into a hypermetabolic state, which causes it to burn more calories than normal. Because of this she is struggling to consume enough calories each day. The doctors would like to see her gain around 30 pounds in the next few months to give her body the energy stores that it will need. She is taking a medicine to increase her appetite and we are feeding her high calorie and healthy-fat dense foods in an attempt to put on the weight. If the gain from this is not sufficient then other methods will be explored.


In the meantime please pray for a break in her pain, and for her appetite to increase.


Lastly, there are a variety of groups that have approached us to ask about raising funds to help out. They have organized a couple of events taking place this weekend that I would like to share with everyone. Sierra Lutheran High School Cheer Squad has a yearly cheer camp and will be donating this years’ proceeds to help with Aunicka’s rising medical costs. The camp is this Saturday, the details can be found at the link below. There is also a Fun Run taking place this Sunday at Lampe Park in Gardnerville. The funds raised at this event will be split to benefit Aunicka and a local mother with cancer named Leslie McGarry. Finally on February 17th there is a Zumba event at the Douglas County Community Center. The proceeds from that event will be split with Aunicka and the Northern Nevada Children’s Cancer Foundation. If you can make it to one of these events, please come on out and show your support. If you can’t make it, please share so that others can find out about it.


There is a gofundme page (www.gofundme.com/aunicka) that we started at the prompting of friends and the community. We didn’t know at the time what we would be up against, but we knew it would be big. With that in mind I set an initial goal of $10,000. With the help of so many generous people we have hit that goal. But due to recent events (most recently three ambulance trips and a med-flight in one day, which may not be covered by insurance) we have reluctantly decided to increase the goal. I want to extend our thanks to everyone that has already donated and to let you know that we appreciate it more than we can ever possibly express.


Saturday Feb 3rd, Mini Cheer Camp at Sierra Lutheran High School, 12:30pm

https://www.facebook.com/events/164151567545952/


Sunday Feb 4th, Fun Run at Lampe Park, 8am

https://www.facebook.com/events/532822660436324/


Saturday Feb 17th, Zumba Event at Douglas Community Center, 6pm

https://www.facebook.com/events/186132378787969/

Journal entry by David Manser

I just found out though that some people have made donations through the Caring Bridge website. I wanted to let you guys know that donations made through this site do not go to Aunicka, they are made to Caring Bridge in Aunicka's name. If you would like to help out with the medical costs please go to www.gofundme.com/aunicka or contact us directly.

I don't have a medical update today, but I wanted to say a quick thanks to everyone that has been so generous and caring through these past few weeks. We have truly been blessed and overwhelmed. There are also several fun and charity events going on around the valley over the next few weeks that have pledged their proceeds to help out. I will be posting info about those shortly here and on gofundme as well as facebook.

Journal entry by David Manser

Pull up a chair, this is going to be a big update, both in length of content and severity of the message. We have a confirmed diagnosis as well as a primary treatment plan. Aunicka has been diagnosed with a VERY rare sarcoma. It is called Alveolar Soft Part Sarcoma, or ASPS for short. It makes up about 0.15% of the cancer cases reported in the US each year, around 80 cases. The following is an excerpt of the description from curesarcoma.org:

Alveolar soft part sarcoma is a very rare, slow growing, highly vessel-forming tumor that can occur in any age group. It is most frequently found in young adults and teenagers and often begins in the lower extremities. Most patients with alveolar soft part sarcoma probably have had the cancer for some time before they come to medical attention. The reason is that the tumor grows so slowly that it at first causes few symptoms and does not form a large mass. By the time the tumor is big enough that the patient feels a lump from the primary lesion and seeks out a physician for help, the tumor has frequently spread, establishing small metastatic colonies throughout the body, frequently found in the lungs and even the brain. It grows even more slowly than clear cell sarcoma, but is definitely a malignant tumor that tends to spread inexorably if not completely removed by surgery. Many patients can live with disease for years and even decades. Although most patients with alveolar soft part sarcoma can never be rid of their cancer completely, many can undergo repeated surgery over the years to keep it somewhat at bay.

The way this cancer presented itself, an apparent sports injury that wouldn't heal, is inline with the way that it generally is discovered. We are blessed to have a great pediatrician that immediately noticed something was wrong and started this entire process. The referral to UCSF Oakland Children's Hospital brought about a very rapid response and then a lot of waiting. We know now that the waiting was due to them performing a multitude of extra, non-standard tests, both at UCSF and Stanford, in the hopes of being wrong on their initial diagnosis. They were not and here we are.

The primary treatment plan, as it stands today is this:
1) Surgically remove as much of the tumor as possible. In this case that would be in the right femur. Here we already run into difficulties. The tumor, which started in the bone has spread to the muscle tissue around the bone. When the bone broke the tumor-infected blood leaked into the surrounding tissue. Because of this the break has been stabilized to allow some healing before the next surgery can take place.

2) The next surgery will involve the resection, or removal, of the infected part of the femur and surrounding muscle tissue. This bone will be replaced with a custom prosthetic femur that can be extended as she grows. This will be an extensive surgical procedure that involves removing and replacing muscle and tendons, as well as nerves and arteries. Our Orthopedic Surgeon, Dr. Wustrack, is particularly skilled at this type of procedure and we have full confidence in her ability to perform it well. After the surgery the tumor bed, or surrounding tissue, will be treated with radiation to reduce the chances of the tumor recurring locally.

3) After the second surgery has healed, and possibly in between surgeries 1 & 2, a regimen of targeted chemo-therapy will be administered with the hope of being able to slow or stop the progression of the tumors in her lungs. There are too many tumors in her lungs for them to be surgically removed. 
This portion of the treatment will initially be able to be performed as an out patient procedure, so if all goes well she will be home taking her medicine orally. If the targeted chemo is non-effective then radiation will need to be used on her lungs as well.

Because there is currently no cure for this particular cancer, this is the current end of the treatment plan. Before we are discharged Aunicka will receive a whole body bone scan as well as an MRI of the brain to make sure that it has not already spread any place else. She will then continue to be monitored, scanned and checked for tumor growth and will continue to take the chemo medicine until another, more effective solution is available.

Aunicka has been told about her diagnosis, and is aware of how rare it is. She also knows that we have the best doctors, as well as the entire Children's Oncology Group looking for the best treatment for her. She had a good day today. She is moving around in her bed and anxious to get out of it tomorrow and begin some physical therapy. Please continue to pray and send your messages of support; we are all greatly encouraged by the love and support we have been receiving.

"Fear not for I am with you.
I am your God.
I will strengthen you, I will help,
I will uphold you with my righteous right hand."
- Isaiah 41:10

Aunicka’s Story

Site created on January 11, 2018

I'm gonna start with a cliche, that is no longer a cliche to me; hug your kids everyday, tell them how much you love them, and spend time with them because you are not guaranteed tomorrow.


At the end of this year's soccer season Aunicka had a pain in the muscle in her right thigh. This is a very common place for soccer pain, pulled muscles in cold weather are anything but unheard of. But 8 weeks after the season ended the pain was still there, it should be healed by now.


We took her in for an x-ray figuring there was a tendon or ligament tear that takes longer to heal. The x-ray showed a lesion in her upper thigh bone (femur) that the doctor said should be closer examined. He set an MRI appointment for Monday, January 8th. The MRI ran from about 4-5:30pm and we were told to look for a call from the doctor on Tuesday.


Tuesday, January 9th, 12:50pm -
Yes, we know the exact time because our lives will never be the same again. The doctor called and told us that the MRI showed a tumor that looks suspiciously like cancer. He set up an appointment for us to take Aunicka to Oakland Children's Hospital on Thursday the 11th. We began to prepare. Then he called back about 15 minutes later and said, "Nevermind, go now. They are expecting you this afternoon."


We packed up Aunicka, dropped the rest of the kids off with other parents or grand-parents and were on the road within an hour. At this time Aunicka hadn't heard the word "cancer" in regards to her leg. We told her only what we KNEW. She has a mass on her bone and the doctors need to look closer at it to figure out the best way to remove it.


Tuesday,  January 9th, 8pm -
It was a long, windy, rainy drive over the pass but we got to the hospital. She was checked into the ER for an overnight stay and officially  diagnosed with the flu as well. They scheduled a biopsy of the tumor for Wednesday around 2:30pm with a CT scan prior to that in the morning.


Wednesday, January 10th, 9:43am -
They took Aunicka for her CT scan to make sure it hasn't spread to her lungs. They have to do this before the biopsy because the surgical anesthesia can show false positives on the CT scan.


Wednesday, January 10th, 12:02pm -
A team of six doctors walked into the room with us while Auni was sleeping. They brought us to the family lounge just down the hall to talk. With our hearts caught in our chests we followed them. They introduced themselves and their specialties. They showed us the photos from the MRI and CT scans and proceeded to tell us that Aunicka has cancer in her leg bone, the surrounding muscle and that it has spread to her lungs. The plan for the biopsy is still in place because they need a piece of it to know what they are dealing with.


Wednesday, January 10th, 5:45pm -
They moved her into the operating room to perform the biopsy. The papers were signed for the anesthesia and we were informed that because she has lung cancer and influenza B she is at high risk for not coming out of the surgery. I know it shouldn't have taken this long, but this is where the REAL HARD praying began.
A side note that will tie back in to the story: a few months ago our home church, Common Ground Carson, arranged a prayer night to seek God's direction for our church in the valley. By His design that prayer meeting took place at this exact same time, 6pm on Wednesday night. We sent out text messages saying, "Pray hard, right now!" And people did. And God showed up.
Her surgery was done in 45 minutes. The very skilled surgeon said she retrieved a great sample and that it does not appear to be osteosarcoma or Ewing's sarcoma. But they still don't know what it is.  Lab tests will need to be run and that will take until sometime Friday.


Thursday, January 11th, 11:15am -
Aunicka slept through the night and woke without pain, so that was a nice blessing. We slept on mattress pads in the room as well and only woke when the nurses came in to check on her. The doctors just stopped by to let us know that they will not be installing the chemo port today, so no surgery today. That means she can eat and relax. They will be doing an EKG and some other non-invasive tests in preparation of the next steps. They also said that the tests to determine what type of cancer this is will likely run into next week. Jon will be spending the night with her tonight so Laura and I are off to find sleeping arrangements for the night. 

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