Week 0

Audrey's chemotherapy will begin on Thursday, November 19th. She will have medicine on Thursday, Friday and Saturday. On Sunday she will receive a shot that helps with her white blood count. This is considered Week 0. This is the schedule as far as we know it - Week 0, 4 days in the hospital; Week 3, 3-4 days in the hospital; Week 6, 3 days in the hospital. Week 7 chemo treatment for 1 day outpatient from the clinic; Week 8 chemo treatment for 1 day from the clinic - After this I assume they will be doing another MRI and other tests to see how the chemotherapy is managing the cancer cells.

I am hoping Ryan will be able to figure out how to get Internet access for me in the hospital and I will let everyone know how she is doing with the treatment.

Latest

Most of the information is still the same. I requested some scheduling changes and they have been able to accommodate. On Monday, November 16th Audrey is scheduled to have her port surgically implanted. This is where she will receive her chemo treatments and blood can be drawn, etc. This is a learning process for us as we recently learned that for the first couple treatments she will have to stay in the hospital at least over night. Because of this knowledge and the fact that we as a family are dealing with all of the changes - Nathan is especially having a hard time and even had a breakdown at school earlier this week - we are requesting that the chemo treatments start Friday, November 20th. This way Ryan will be home with Nathan. Dr. Beaty indicated that if the finally pathology comes back indicating an urgency we will have to begin chemotherapy before Friday.

This weekend Steve, Rosie and the kids will be coming to spend a weekend with us before Audrey's treatments start. Because we will not be able to travel for some time (meaning my first Christmas in my 28 years I will not be in MI for Christmas) we will be celebrating Christmas with the cousins this weekend.

One day a few weeks ago I was talking and crying with my mom and semi-out of nowhere she said, "You know, I think next year is going to be a great year for our family." That is a lot of what I have been focusing on lately - next year is going to be great! Thanks Mom!

The Plan

We had our meeting with Dr. Beaty last Friday. We now have a schedule of medical procedures that will occur Monday, Tuesday and Wednesday. On Monday she is having an MRI of the original tumor spot so they can use that as a baseline to compare after chemo treatments. On Tuesday she is having CAT scan of her torso and a bone scan. On Wednesday she will have a surgery to implant the port where she will receive her chemotherapy treatments. This is really important because she will not have to be poked each time she receives the treatment - it is also very important for her veins.

Dr. Beaty has talked to a Doctor from Washington D.C. that currently has two patients (6 months and three years) in a similar situation as Audrey. He has been treating the patients with lower doses of chemotherapy (than was previously used) with better results. The medicines cause toxins at such high levels in the patients' bodies that often the treatments were causing the patient to become very sick. With the new treatment of lower doses of chemo the toxins are reduced and the patients are much healthier.

We will be going to Jacksonville, Florida for radiation on the original tumor spot. This will most likely happen in January or February. We do not know much about the radiation except that this specific machine is only found in two places in the country so the doctors that run the programs are experts.

Providing Audrey is in good health and gets over her viral annoyance that she currently has she will most likely begin Chemotherapy on Monday, November 16th. The chemo treatment plan is a 30 week schedule. Dr. Beaty was quick to add that though the plan is for 30 weeks we should plan for much longer (9 months to one year) as if she isn't perfectly where she needs to be on her blood counts, ect. they cannot administer the chemotherapy.

More Information

We spoke with Audrey's pediatric oncologist, Dr. Beaty, as the first part of pathology has come back. We know that there is a possibility of two things that Audrey has - epithelioid sarcoma or it is classified as a rhabdoid tumor (specific type of rhabdoid will be determined with continued pathology). The epitheliod generally occurs in teens and shows up in their extremities. The rhabdoid is considered to be a pediatric cancer generally showing up between the ages of 2 and 13. The doctors here have felt like it is rhabdoid from the beginning - as this would be the age for it to show up and the tumor was embedded in muscle which is another characteristic. The very unique thing about this is that the rhabdoid generally attacks the CNS (central nervous system/brain) and/or the kidneys. We have had an ultrasound of the kidneys and an MRI of her brain and both are clear. Perhaps this is why pathology is taking quite awhile to come back.

Much of the information that can be found on the Internet regarding rhabdoid tumors is old information, published in the late 90s - and speaking medically the information is practically ancient. Because the information is old and most of the articles cite children that are discovered to have this after it has entered the brain the mortality rates are very high. Audrey's situation is unique - perhaps the only child that has had a tumor to appear somewhere before it entered the CNS or kidneys. The tumor may very well be the thing that saves her life.

We are still waiting to have an official meeting with Dr. Beaty to discuss our plan of action but we do know that it will include chemotherapy. The length of time she will be on chemo is unknown, the exact concoction of medicines used in chemo is unknown and though we believe it is in the rhabdoid family we do not have it narrowed down to the specific type and we are waiting for the cancer to be staged - which will indicate how concentrated the medical professionals believe it is.

As we get more information we will post it to our blog as I simply do not have the time or energy to call everyone with a personal update. Be sure to become a "follower" of our blog and post your comments and questions.

On a personal non-informative note: I feel like this is the calm before the storm. Audrey is spunky, sassy, full of life and a regular two-year-old. She has been running, playing, talking, processing, attending birthday parties, helping with the girls I watch and enjoying life. Once the chemotherapy starts our lives will turn upside down. Though we do not know exactly how Audrey will respond to the treatment - we have a fairly good idea. There are going to be emotional ups and downs. We have been told it is best for Audrey not to attend church the entire time she is getting the treatment. I will no longer be able to care for Bella and Sophia. People will only be able to come over when they are completely healthy. I am going to have to ask and depend on others to assist with things I simply cannot do on my own.

Thanks to all of you for your prayers, fasting, love and support. I am so grateful to have all of you as my support system.

Audrey Update

It is official Audrey has cancer. The tumor was removed from her back on Wednesday, October 28th. We had an appointment on the 30th to find out what the specific type of cancer is. Unfortunately the pathology is taking longer to get back than even the doctors anticipated. We have a pediatric oncologist, Dr. Beaty, taking care of us from this point.

We were able to have a happy, normal Halloween. Audrey dressed as a flower (like last year) and this year Nathan was a T-Rex! Pictures will follow in a few days.

On Monday we took Audrey to another round of testing. This time we specifically looked at her kidneys and brain. One of the kinds of cancer she may have generally affects the brain and/or kidneys - thus the need for the testing. Both of the tests came back indicating that everything is clear and looks good. We are so thankful for that!

During the meeting with Dr. Beaty last Friday he said that if Audrey has one particular type of cancer she will not have to go through chemotherapy. Before the meeting I was under the impression that because she has cancer, regardless of the type, she would need to have chemo as a preventative of it continuing through her system. I know chemo is going to be so difficult on Audrey and our family - watching her go through the treatments. However, I was beginning to prepare for that. Now I have this glimmer of hope that she will not have to have chemo therapy and that is all I can think of. Oh, how I wish he wouldn't have mentioned this and it could have just been a wonderful surprise and blessing if it turns out she has this one type of cancer... We should have pathology back by the end of this week.

Rewind Please

Photo taken by Ruth Thompson - on her visit from Washington State

On Wednesday, October 21st I was a normal, happy mom working from home and staying home with my babies. Audrey, Bella, Sophia and I were playing in the television room when I noticed an odd bump on Audrey's back. I had felt it the day before while playing in the playroom but dismissed it as her shoulder blade. Upon further inspection I realized that it was certainly some type of abnormal growth. I called Ryan, completely panicked - near tears, not sure what to do. We decided to immediately call our pediatrician's office to set up an appointment.

Thursday morning at 9:30 we arrived to our pediatrician's office where they nearly immediately sent us over to the hospital for a chest x-ray which then turned into an ultrasound and then an MRI. The radiologist said that the mass has "characteristics that are not typically benign." They have ruled out fatty cysts that typically occur in young children. However, what they do see is centralized in one area and it is not in any organs or bone. It is also in a "good" place on her back under her left shoulder blade not in the front of the chest or near lymph nodes where cancerous cells can often spread quickly. While we do not yet know if this growth is cancerous - I don't have much hope that it isn't.

We have spent much time talking, crying, planning and wondering. My heart hurts. I am scared, worried and sometimes lifeless. We are a strong, close family and this is the most difficult thing we have ever been faced with. Audrey received a Priesthood blessing on Sunday. Nathan is still trying to figure out why I cry about Audrey's lump - even though we have explained how scary this is because we don't know anything about it- he is still confused.

I just want a rewind - to be that happy mom playing in the playroom with my children worrying about what to make for dinner tonight.