High

Maura has come through  this cycle of low everything with flying colors. Her WBC should be on its way up today. Her energy level yesterday was the highest we've seen in a long time.  She even got the tiniest bit cranky when someone (um...me) tried to do too much for her. I love cranky! 

Low

Low white blood cell count, low red blood cells, low blood pressure, and a climbing heart rate. That means that she is weak and tired and fragile--and all of that is expected from the strong chemo drugs.  Last cycle, at this point, she was hospitalized with a fever and pneumonia and other infections. So far, she is fever-free. Thank you, God. Her spirits are high.  She continues to amaze me with her faith and courage.

Happy Birthday, Maura!

Maura had a good day. Family (she misses her sisters) close by, friends dropping in and out, lots of food (most of which she didn't eat), lots of presents.  And, other than feeling weak and tired, she felt pretty good. 

Round 2 of Chemo

Today Maura finished Round 2 of Chemo. In so many ways it was easier than Round 1. As an example, during Round 1, Maura's pulse rate hovered around 150 most of the time. During Round 2, her pulse rate stayed in a normal range until yesterday and today, when it got as high as 126, but not for too long, and that was primarily due to insufficient fluids. Her blood pressure has been low as well, but not as low or as often as during Round 1. She is exhausted; she feels very weak. She can't walk much. We used the wheelchair both yesterday and today. Dr. B had promised Maura that he was going to beat her down pretty hard over the next year or so. For Round 2 he changed the dosage of one of the chemo drugs to give her more over a shorter time period, which hits the tumors harder, but, of course, is also harder on Maura's body in general. Over the next seven or eight days, Maura's white blood cell count will tank again. We hope she will avoid pneumonia and other various and assorted infections this time.

One day, Maura and I were talking about this whole chapter in her life, and she said that it hasn't been difficult for her to find meaning during such a difficult time. "Not really," she said. "When I think of having cancer, I don't think about the pain of the last two months. I think about how good it is to have family and friends who love me so much."

Shrinking, Benign, and Dead Tumors

We got the results from yesterday's CT Scan--basically, good news with some caveats. Before I tell you the specifics, let me say that when we were back at Park Plaza Hospital, awaiting Maura's surgery in April, I found myself in the chapel, unable to even form the words of a prayer. I was too overwhelmed. Lydia said, "That's okay, Mom, Just find a word. Or maybe a few, and whatever they are, just offer them up as a prayer." So I did. I could only come up with the words shrinking, benign, and dead tumors.  I just kept saying them over and over because I didn't have the energy or the brainpower to form any coherent prayer. I figured God could make sense of it all.  I wrote them down in the prayer book as I left the chapel.  

So, this is how things stand as of now:

Shrinking: 

The tumors are responding well to the chemo.  As an example, the largest tumor, measuring in at 8.8 cm in the CT scan just prior to chemo, is now at 4.5 cm.

Benign:

The supposed large tumor behind her ovary isn't a tumor.

Dead Tumors: 

By the time Maura started chemo, she had way more than the seven tumors that showed up on the PET scan in May.  She had tumors" too numerous to count." Lots of little buggers.  They are dying off. Some of the biggies have lots of necrotic tissue on the inside, so they are "mostly dead" like Wesley in The Princess Bride. Some of the tinies are just all dead.  The fluid that was around her liver is gone, which is good, but I can't remember why.

Lots of progress, yet still lots of tumor.   Dr. B. says that it is still a long, hard, uphill road to follow, but that these first round results are "spectacular". 

Maura is ready for round 2 of chemo that starts in the morning. When we compare her condition this past week with that of the week prior to Round 1 of chemo, we are amazed and thankful.  The week before Round 1 of chemo she was throwing  up three or four times per day and she was in pain.  This week, before Round 2,  she has had almost no nausea and very little pain. Thank you so much for your prayers and concern. Please keep praying.  

Walking

Maura walked to and from the parking lot at M D Anderson yesterday. That's the first time since starting at MDA that she hasn't needed a wheelchair to help her through the long hallways. She is regaining her strength. We are thankful for the strong days.
Chemo preparation starts on Sunday.

Beautiful

Today Maura decided to buzz cut her hair off. Is it possible that she is even more beautiful than before? I never before noticed what great cheekbones she has, or how perfectly shaped her head is, or how beautiful her silhouette. So many beautiful features that were overshadowed by her long, thick, blondish hair are now fully visible. Simply stunning. What a gorgeous daughter I have!

We returned home from the hospital today. Hurray! White blood cell count is normal. Fever is gone. Pneumonia and other infections have been chased away.
Visiting hours are open. We'll be at the hospital on Wednesday and Friday morning but should be around most of the rest of the time.

Hospital

We came to the emergency room on Thursday morning because of Maura's fever, which spiked up to 102. They decided that she should be admitted to the hospital to receive IV antibiotics and fluids. She has multiple infections, but is responding to the medicine. She was dehydrated and has developed mouth/throat sores as a result of the chemo. By Friday afternoon she was noticeably better. And today, Saturday, her fever seems to be going down. God continues to bless us with hope, good medical care, faithful friends and family.

Fever

Maura's white blood cell count is down to 0.3, but the clinic triage nurse still says that it is to be expected. Okay. I'm slightly freaked out by the low number, but okay. She feels crummy and she also had a fever tonight. It hovered around 101, the magic number when we are supposed to take her in to the emergency room, but quickly came back down to a safer number when she drank more liquids. She hates the drive to M D Anderson, so she worked hard to get them down. Thank you for praying and calling her and sending cards and notes.
Several of you have asked me when you can visit Maura. I'll check with the nurse about visitors because Maura really loves it when friends come over, and I hate to keep you away for too long.

White Cells

I didn't realize that low white blood cell counts would be so low so soon. The low end of the range of a normal white blood cell count is 4. Yesterday's blood work showed Maura's as being 0.8. A day after chemo they gave her a shot that is supposed to stimulate the production of white blood cells in her bone marrow. I hope it kicks in soon. Because of that, please hold off on your visits until the counts are back up. You can still call and talk to her.

Two for Two

We need to be especially vigilant this week as her white blood cell count diminishes, keeping Maura away from any possible exposure to infection. We have signs on the door asking people to head straight to the sink for 30 seconds of hand washing followed by hand sanitizer. She started wearing a mask last night when her friends came to visit, and we had to escort her out of the living room and "put her to bed" when she was visibly exhausted but unwilling to say goodbye to her friends.
She LOVES having her friends visit--all of them--and we all appreciate the love and attention shown by so many toward Maura. In fact, one of the doctors made a point of telling us that study after study has shown a definite correlation between long-term survival rates and two non-medical factors. The first is a deep faith and knowledge that God is in control. The second is the love, prayers, and support of friends and family. Maura is two for two. So, keep those visits and letters and emails and cards and prayers coming. Maura has every card hung on the wall in her room. She cherishes the time she has with friends and family. (Check with us before you visit, though, to make sure she's healthy enough)

Chemo Rest

Hurray! On Friday night Maura was disconnected from her chemo pump for at least two weeks. She had so many drugs put into her body this week--some via 24-hour pump that we brought home in a backpack each night, but most of them infused at the hospital Monday through Friday. Besides the two different chemo drugs, she was given drugs to counteract the side effects of the chemo, and more drugs to counteract the side effects of the drugs that counteract the side effects of the chemo (are you still with me?). We hope that the next round of chemo will start in the daytime because Maura did not sleep much this week because of certain drugs that kept her awake for several hours after our 11:pm or midnight return from the hospital each night.
So, for the next two weeks, she only has to go to the hospital three times a week for blood work and any additional treatment that the blood work might indicate she needs--not quite sure what that will be but I think it has something to do with low white or red blood cell counts and something in the blood called nutraphils (sp?). I'll look that up another day.

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.