Doing Something

Once again we are in the zone where we feel very positive because we are "doing something" instead of waiting.  Waiting is so very hard. But we are on Day 2 of chemo now. Long days seem to be the norm now.  We arrived here at 10:00 a.m. for her first chemo yesterday.  Because of difficulties with her central line which necessitated a couple rounds of "central line draino" and another chest x-tray, chemo didn't start until about 6 pm. We left the hospital around 11:30 p.m.! The good news is that, except for the last hour or so, she tolerated the chemo pretty well. She even ate solid food and kept it down for the first time in a week. She was so exhausted, and the nausea meds so strong that she slept more last night than she has slept in the last several days combined. We've been at the hospital since 9:30 this morning for a doctor appt.  Because chemo was delayed yesterday, we'll have afternoon chemo times for the rest of the week, but not quite as late as yesterday. At least that will give us time in the a.m. to establish our chemo care routine. We are still on the wrong end of the learning curve, but making progress.

MDA Day 2 and 3

Yesterday was tough. Today was better.
We've had two very long days. Our dentist was great about giving Maura a thorough cleaning/exam/and fillings on less than a day's notice. Then it was off to MDA for Maura's central venous catheter, the kind that enters through a site just under her collar bone and is sutured to her skin. The first person to stick her couldn't find her vein, so they had to call someone else. That caused a lot of extra pain, and the site is still painful, although they've verified by x-ray that everything is where it should be. It's worth it because they can use the central line to deliver her chemo and most other IV stuff. Since she doesn't have great veins for IV's anyway, this will save her a lot of sticks and misses. She was so dehydrated that they gave her two liters of normal saline, which perked her right up. Then, we went to the Sarcoma Center for some quick Chemo Training. Not fun stuff that chemotherapy. We finally left the hospital at about 6:30 p.m. Today we arrived at 6 a.m. for a CT-scan, followed by catheter care training, where I had to pass a test (a demonstration in front of the nurse, using Maura as my test subject)before they'd give me a prescription for the supplies. The last appointment of the day was at 6:30 pm to get an infusion of a drug that is designed to prevent mouth sores in chemo patients.
Maura feels nausea a lot of the time and doesn't want food. I've been chastized by the nurse for trying to get Maura to eat. The nurse assures me that Maura will not starve or suffer malnutrition and I mustn't force her to eat because she can develop an aversion to food and increased nausea from just thinking about food. I can, however, bug her to drink two to three liters of fluids per day.
We thank you for all the emails and notes and comments and prayers and encouragement.

M D Anderson Day 1

Short version:
Maura was seen at the Sarcoma Center of M D Anderson today. They firmly disagree with the previous diagnosis of GIST and Maura will no longer take the Gleevec as of today. She has an "unclassified sarcoma" that has metastisized to her liver, at least. It is very aggressive. She begins chemotherapy probably over the weekend, or very soon thereafter.

Longer version:
Thanks to Maura's surgeon, Dr. Etter, who knows someone, who knows someone else, Maura was able to see the chair of the Sarcoma Center today, and he has accepted her as his patient. Dr. Benjamin has a great bedside manner and gives the best hugs in the world. He was compassionate, very honest, and yet, did not strip us of all hope while letting us know the steep uphill battle that we face--the battle that Maura faces. They have asked Maura to plan on dedicating the next year of her life to healing, i.e. this is our first priority. Nothing else--not school, not social life, not jobs, nothing, takes precedence over doing what needs to be done as we seek to erradicate Toby. Healing will be a full-time job, as will care-taking.
Today has been very scary, to say the least. But we were kept very busy, and will be for the next few days. Everything will be on an outpatient basis. Today--registration and clinic visit, blood work, x-rays, patient education. Tomorrow and forward will include having a central line put in, more patient education for the central line, chemo training, a dental appointment to have teeth cleaned before starting chemo, more CT Scans, some strange pre-chemo treatment, and lots of prescriptions and chemo/central line supplies to fill and purchase. Scads and scads of information.

Yes, a couple of weeks into chemo, Maura will lose her hair. Bummer.

Both sorrow and strength seem to hit us in waves, never all of us down at one time. Maura constantly amazes me with her ability to cope.

And God's grace is sufficient for today.

Waiting

Maura had a tough morning, with increased pain, but overall, the last few days have been okay. She has tolerated the Gleevec pretty well. Having her friends come over and spend time with her lifts her spirits, even if it does tire her more.

Weekends are hard because we know that no progress is being made toward a treatment plan. So we wait. Monday we will call MDAnderson to see if we can speed things up a bit. Still, we know that they have a process and a whole team that looks at her records, her scans, and her tumor slides. They told us that they give themselves ten business days to preview a case. We just hope for it to be fewer.

Good day

Maura had a good day with a decent amount of energy. She ate. Her nausea and pain were under control. She enjoyed the company of her sister and friends. Waiting isn't so hard when the days are like this. Thank you, God.

There are a couple of other sites with info about Maura:
Lydia is trying to get all the photos on TobytheTumor.blogspot.com
Kara has a facebook group with teal nail polish pictures called Let Terminate Toby the Tumor Together
And, of course, the infamous Lydia/Matt video from the hospital room is on YouTube. Just put Termination of Toby the Tumor in the Youtube Search box and it will pop up.

Medicine

The morning was tough, but the late afternoon and evening were pretty good, after changing the medications a bit. The chemo pill, Gleevec, definitely causes her nausea and cramping, but the new anti-nausea drug worked today. Maura ate almost normal amounts of food.

She refuses all pain medication right now, saying that "there is no point if it doesn't work." Two pain meds gave her more pain plus anxiety and depression. A third one gave her nightmares. A fourth did nothing for the pain, but made her depressed and anxious. Aspirin and Advil are off limits because of potential problems with the Gleevec. We were down to plain Tylenol, but today she refused even that. She still experiences quite a bit of pain, but she just sucks it up.

All the necessary reports and pathology slides have been delivered to M D Anderson. Now, we are back to waiting.

Toby's Evil Spawn

Bummer.

PET/CT results came back today. After a very tough weekend for Maura (she had more pain with the pain medicine than without), today we found out what we had already suspected: more tumors. The tumor discovered last week near her ovary looks like one big clotted cyst, but activity on the periphery indicates that it is really a tumor that has bled into itself. Maura named that tumor Tina. In addition, there are four tumors on her liver and three more in the mesentery. Maura hasn't named the other tumors yet. Your creative suggestions for the worst baby names beginning with T are solicited.

Good news: the doctor prescribed some medicine that should help with her nausea and vomiting and help her appetite as well--she's lost 17 pounds since this began last month.

More good news: Things are finally coming together to get her over to MDAnderson for treatment. I have to make sure all her scans and tests and rerports and path slides make it to the right place, but that's just legwork and paperwork, and her current oncologist is helping with a lot of that. We are not sure what lies ahead, but it will include some more surgery and maybe some weird procedure where they microwave the tumors on her liver.

Maura is taking this very well. I think that it is easier, almost a relief, to know something for sure than to suspect it. And I know that a lot of people have been praying for us today, too. God's grace is sufficient for today.

Privilege and Blessing

Mother's Day is tomorrow.  It is a privilege to take care of my very sick child.  Given the immutability of our circumstances today, there is no place I would rather be, nothing I would rather be doing.  It is a blessing to see so clearly the depths of my love for her.  Thank you, God.

PET/CT

Maura had PET/CT Scan this afternoon. Results on Monday.

72 Hours

It has been about 72 hours since the request for the PET-CT Scan. Seventy-two hours. That's how long it takes for our insurance to approve anything expensive. And we wait. So, time out, Toby. Time out. Don't grow or multiply until the insurance company can process the approval. Not you, Toby, and  not your evil spawn, either.

More test and chemo starts

We saw the oncologist again on Monday. He spent about over one hour with us. He is not convinced that the new mass is a tumor. He has ordered a PET-CT scan as soon as our insurance will approve it.  It takes three days for our insurance to approve something like this (why?). 

He has moved our next appointment closer to just after the PET-CT test is done.  He has referred us to a gynecological oncologist who works out of MD Anderson but has an office in The Woodlands, closer to our home. 

Meanwhile, on the chemo front, we found out that the pharmacist was also facing the same three-day pre-approval process for the chemo. When I offered to pay out of pocket and by-pass the insurance, she gave us a week's supply of donated chemo pills to tide us over until the insurance is straightened out, so Maura will start chemo tonight as planned.

God bless health insurance. Everyone should have it! This medicine costs more than I earn.  And that's why I voted for Hillary. 

We thank you for your prayers and your concern. 

History

Maura had surgery to remove a canteloupe-sized tumor from her abdomen on April 17. She named it Toby. 

During ten days in the hospital, Maura's friends and family rallied around her, showing love and support. She had over fifty visitors; she received so many cards and gifts and flowers and phone calls.  People showered us with attention, kept us fed when we couldn't remember to eat. On Facebook there is a Group called Let Terminate Toby the Tumor Together [sic] where you'll find lots of pictures from around the country (and out of the country) of teal-painted fingernails. Friends, cousins, aunts, uncles, mom, dad, sisters, work groups, Sunday School classes, and random strangers, including NYC construction workers, are wearing the teal. Teal nail polish is the color of choice and has been renamed Toby the Tumor Terminator Teal.  

And the cranes...

On our first Sunday in the hospital, Jessica, an origami enthusiast, told us of a Japanese tradition that says if you fold 1,000 paper cranes, your prayer will be answered.  After a couple of comments about how nice it would be to get 1000 cranes folded for Maura, one of Maura's college friends, Jacob (who is the very model of a modern major general), said, "Well, let's do it!" Fifteen of us made cranes in the hospital room, and we kept making them. Adam taught his students to make them. Jacob sponsored crane-making parties back at the college. Matt put boxes in the music building labeled "Cranes for Maura". Adam and Jacob and Matt hung the first strands of cranes in the hospital room. The day of Maura's surgery, Matt brought over 500 cranes from SHSU and he and Lydia and Megan Mulkey hung them while Maura was in the operating room. When she returned from surgery, there were over 700 hanging in her room. We currently have almost 1200 hanging in her room at home. 

After what seemed an interminable wait, on May 2 we found out that the pathology results showed that the tumor was a GIST (Gastro-Intestinal Stromal Tumor). Until 1998, GISTs were treated like any sarcoma. Someone discovered that the drug Gleevec, previously used on patients with a certain type of leukemia, also worked for GISTs. Gleevec is a special kind of chemotherapy that doesn't kill quickly-dividing cells, but, rather, inhibits a protein that lets the cancer cells divide and multiply.  It is a pill taken daily. therapy can continue for years.

The very next morning, May 3, we were back in the emergency room because Maura experienced severe pain.  Another CT scan and a couple of ultrasounds later we were told that a second mass was visible near her right ovary.