Donate Platelets or Whole Blood 713-792-7777

Here's my plug for blood donations, especially platelets, at M D Anderson:

     M D Anderson transfuses more blood and blood products than any hospital in the country. The need never declines, but the donations do.  Maura was lucky yesterday because she was able to get platelets when she needed them. Others weren't so lucky. One patient had already received his pre-transfusion drugs, but the blood bank postponed his order for platelets because he did not meet the criteria for critical need. Another man waited for hours, hoping that the blood bank would acquire more donated platelets, but finally gave up at about 8:00 at night.  

     Donating blood is easy and the pain is minimal. Sure, it hurts to get stuck with the needle, but that's it. The whole operation, from needle stick to band aid and free orange juice, takes 25 minutes. You can donate as often as once every eight weeks. 

     Donating platelets is a little more time consuming, but with no additional pain nor additional needle stick.  In about 60 to 90 minutes, they take your blood, separate out the platelets, and return your red blood cells and plasma to you. Your body makes platelets a lot faster than red blood cells. You can donate platelets as often as every other day. 

     Chemotherapy kills blood cells--red blood cells, white blood cells, platelets--all of them. But the most critical need at MDA is platelets. It takes the platelets of eight donations of whole blood to equal one donation of platelets alone. Low platelets can cause bleeding and bruising, which doesn't sound earth shattering until you realize that internal organs can spontaneously start hemorraging if the body is low in platelets. You can't just apply pressure to your brain to stop its bleeding. 

     So, if you can, please donate platelets or whole blood. If you can't donate, get other people to donate. MDA prefers that people make an appointment the day before donating platelets, since it takes longer. The number to call is 713 792-7777. If you can't get to an MDA donation site, please contact your local Blood Center.

     

Merry Christmas!

Maura had a great Christmas! First, both her sisters are here for Christmas and beyond. She loves to be with her sisters. We had to spend much of Christmas Eve at the hospital for lab work and lab review, but we were together, so we were happy. Missed church, though. Maura checked about returning on Christmas day, but the nurse said more than once that she did not have to come. We knew the nurse had made a mistake, but, we stayed home anyway--I mean, come on, it was Christmas!

Maura's cousins live mostly in California. They all stay in touch fairly regularly and draw names for their own Christmas gift exchange each year. The 2008 Hoggard Cousin Gift Exchange became the 2008 Let's Cheer Up Maura Gift Extravaganza. The cousins and sisters gave her a large boxful of presents of every kind, including a Wii game system and Rock Band. Maura was ecstatic. We drummed, strummed, hummed, and wailed away for hours yesterday. Today, we got home from the hospital at 11:30 pm and the family is rocking out again. Nice.
I love my nieces and nephews. I love their thoughtfulness and their willingness to give up their own present to make Maura happy and show her that they care about her.

Today (well, actually yesterday, since it's after midnight) we spent about thirteen hours at the hospital only to leave without receiving the transfusion of red blood cells that she needed. It was the perfect storm of delays and mishaps. First, it took four hours just to get the lab work results, which showed that Maura needed both plenty of platelets and red blood cells. Then it took hours to get a slot in the transfusion center. She almost didn't get her platelets because of an acute shortage. Their were only 15 bags of platelets in the whole hospital. Only those with platelet numbers under 10 (low normal is 140) or active bleeding were considered critical. Maura's platelets were at 6 today, so she got one bag of the precious golden liquid (okay, it's not golden--it's more of a pukey yellow, but it IS precious). Finally, the lab neglected to do a type and cross, a necessary test before a red blood cell transfusion. Okay. fine. Send a phlebotomist to draw more blood from her torn up veins. The phlebotomist forgot to immediately send the blood to the blood bank. More delays. Our nurse figured that there was no way at this point to get six hours' worth of red blood cells transfused before closing. Duh. By the time the blood bank had finished its protocol and sent the two units of rbc upstairs, we had already been rescheduled for the next morning and were walking out the door.

Our faith in the Promise of Christmas has carried us through these last eight months. My favorite Christmas card received this year is one with the following written on the inside: "This Christmas season and in the new year may you rest in the deep assurance that in knowing Him you have everything."

Food

The five days of chemo in Cycle Nine seemed more difficult than usual. More fatigue, more nausea. Last night the nurse disconnected her from the chemo pump and we celebrated with Taco Bell after the nausea subsided a bit. Most of us would not eat if we were feeling nauseous. Maura has learned to eat despite the nausea, which doesn't go away completely. Her doctor says she is on a seafood diet, or rather, a "see food" diet--if she sees food she wants, then she should eat it. During active chemo days, that means she eats very little, if anything, but then her appetite returns, despite the upset stomach, and she begins to eat normally for the rest of the cycle.

Mystery Shoulder

Someone asked me who belongs to the shirtsleeve in the picture of Maura . It's an Astros shirt and shoulder belonging to former Astro ballplayer Luke Scott. The picture was taken before a game last year. I cut Luke out of the picture for the purposes of this blog. Sorry, Luke.

Night and Day

The perfect time to start chemo is 1:00 in the afternoon. Starting in the morning means dragging Maura out of bed, denying her sleep and rest. Starting in the late afternoon means returning home after midnight, denying me sleep and rest. But, said Goldilocks, starting at 1:00 is just right. We avoid the morning rush both at home and on the freeway. We usually return home close to a normal bedtime, so Maura can more easily fall asleep and avoid the worst of the bleh.
I think I'll start requesting 1:00 and see what happens.

Nine

Maura has had a great week--really, a great round. She has felt strong and energetic. She has recklessly and wonderfully spent fun time with friends and family, stayed up way too late, and possibly done too much, but always with an eye toward Cycle Nine, knowing she would have plenty of enforced down time. So, Nine is here, starting tomorrow, Monday through Friday.

TGIF

Maura has the weekend free! Hurray! We are off transfusion watch for the time being and don't have to return to the hospital until Monday. Platelets were at 57 today--an 18 point jump from yesterday--still quite low, but above the threshold for daily monitoring. The plan to delay treatment remains unchanged, despite the good platelet news, so Maura will have an extra week for her bone marrow to get back up to speed and do what it's supposed to do.

Delay

Maura's next chemo cycle will be delayed because of low platelets. She will have one of the fancy boostherplatelets injections tomorrow and another one next week. Then Dr. B. will re-evaluate.
I understand the importance of getting those platelets up to a level where she won't be in danger of bleeding to death; nevertheless, every time there is a delay in her treatment, I feel a flutter of panic. So, I go back to the concordance at the back of my Bible and start looking up all the verses that have the word trust in them. It's the only thing that calms me when I wake up at 3 a.m. in a cold sweat.

8 Days a Week

Today marked eight days in a row that Maura had to go to MD Anderson for blood work. Tomorrow will be nine. Actually, out of 18 days in this cycle so far, she has not gone to the hospital on only three of them. I'm not complaining, but rather, just pointing out how time-consuming this is. At the beginning of this experience I wrote that taking care of Maura would be a full-time commitment for her and for me, and it has been just that. Friends have helped in so many ways. I'm thankful that Jessica has sometimes taken Maura to the hospital or just come to the house to stay with her so I could go to work.
So, Maura's blood counts are still teetering and we are still on "transfusion watch". But Maura did not take the boosttheredbloodcells injection this cycle, and she has not yet needed a transfusion of red blood cells due to critically low hemoglobin. Her body seems to be maintaining on its own. Nice. And, although she needed a transfusion of platelets again this cycle, she seems to be turning the corner, and her platelets should be going up tomorrow.
Well, that was boring news, wasn't it! More exciting is that Maura has done exceptionally well this cycle. She has felt good, and has enjoyed the company of both her sisters over the Thanksgiving weekend. She cooked the pumpkin pies, the cherry pie, and a banana pudding thingy. Maura also made beer bread for Thanksgiving. It was all delicious and I was surprised to see the burst of energy throughout the holiday weekend, which fell during what should have been difficult days in her chemo cycle. I don't know what helped her more---Bianca (the new dog) or her sisters' presence?
We've seen one of our hospital buddies twice this week. Linda is a woman from the Hill Country who has been living in a hotel across the street from MD Anderson for eight months. when we met her she was confined to a wheel chair. This week she was walking! It is such an encouragement to us to see such progress!
This Thanksgiving has been especially meaningful for us. We have so very much to be thankful for and are blessed beyond measure. Most of the time we are quite happy, despite our concern. And when we are stuck in the muck because of doubt or sadness or confusion, God just tucks us under his arm and carries us across and away from the mud.

Low Blood

After such stellar blood counts on Friday, Maura's blood counts tanked on Monday. Low white blood cell count--0.1--led the way for a 101 fever that came down a bit after drinking plenty of fluids. She was miserable all day, but the fever broke overnight.
Her platelets were at 14 today, only slightly above mandatory transfusion, so they went ahead and scheduled her transfusion for tomorrow anyway. That's a good idea, so we know she'll be okay on Thanksgiving and the day after. In fact, I'm kind of hoping they go ahead and give her a bag of red blood cells while they're at it, so she'll have some energy for the holiday. We'll see how things go tomorrow.
The fever, fatigue, and the low blood counts are to be expected. Nothing out of the ordinary.

Good Blood

Maura had an uneventful 8th cycle (Thank heaven!) and is recovering. Her blood levels were pretty good Friday; so good, in fact, that I began to doubt that they were even hers!
Bianca has been the focus of Maura's energy and attention this week. She sits with Maura for hours and follows her everywhere.

Chemo Puppy

Chemo Cycle 8, Day 1.
Maura slept through chemo and came home to sleep some more. That, by the way, is the best way to go through chemo--wish it could be like that each time.
While she slept, both at the hospital and at home, Joel took a trip to Mesquite (east of Dallas) to pick up a rescued one-year-old Maltese/Poodle mix we'd picked out online. Originally, we were going to get her a dog for Christmas, but we both felt we had found the perfect match for Maura, so, why wait?
The rescue people shaved her coat when they took her in a few weeks ago, so, although she has beautiful blond, wavy hair, she is currently mostly bald. Hmm...sounds familiar.
Maura was surprised to see the dog when she woke up and even more astonished when she realized the dog wasn't just a visitor but her new companion. Bianca (newly named) padded straight to Maura, whose eyes welled up with tears as she hugged Bianca to her chest.
Perfect.

Answers

Maura had a great weekend and a very newsy doctor visit on Monday.
She hung out with her friends most of the weekend, going out as much as possible, knowing that next week she'd be feeling pretty lousy again. it was great to see her feeling so well and energetic.
On Monday, the doctor let us know that she was scheduled for chemo to start this Saturday. That's good because most of the bad days will be over by Thanksgiving.
Maura learned that the Heart Scan showed that her heart is in great shape, which means that she can continue to receive chemo. That's good news.
She also learned that her tumors--the ones that were once called "too numerous to count' are now probably countable. In fact, the doctor took a few minutes right then and there to start counting and he only came up with five. Just five. From "too numerous to count " to "count on one hand" in only six months.
He also said not to get worried about the marker tumors (the ones that are tracked from scan to scan--I think I made up that term, but it's a good term) not decreasing much in size this time. He said that as long as they are decreasing at all, that it is good, and that we should remember that a lot of the total tumor mass is dead tumor, not live tumor. He did add, however, that if they were to open her up, they would find more than five--the buggers hide.
That brought up another subject. We now understand that the ultimate goal is for the tumors to get to a point of containment where they are 100% resectable (removable, operable). So now we know what the goal is: surgery to get rid of the last traces of Toby's evil spawn. When we tell you that Maura is scheduled for surgery, that will be great news.

Hmm...

Well, we didn't exactly get heart scan results. The nurse called and told Maura that she could skip one day of lab work. Yippee! She seemed a bit confused when Maura asked about the heart scan results, but came back saying they were fine and blah blah blah (a bunch of stuff that Maura didn't understand). We figure that's not bad news, but we'll have to call to make sure.

Heart Scan

Maura had an early morning heart scan, which turned out to be a much simpler procedure than a CT-scan--mostly just waiting. The nurse injected her with a special dye, hooked her up to electrodes like an EKG, and then tried to point out different parts of the heart on the screen. Maura said she couldn't identify anything she was seeing as "heart."
Tomorrow evening we will get the results, we think. The scan is necessary to check for signs of damage to the heart muscle, caused by the cumulative dose of the doxirubicin. The scan and the obligatory "transfusion watch" routine were all finished by noon, giving us a short hospital day.

Flu Shots

Maura's doctor has told Maura not to get a flu shot, but he has recommended that those in contact with her get one.

Busy Week

We have an internet connection--hooray! It's been an eventful week.
Sunday-Maura was in a lot of pain. She didn't sleep because of abdominal pain.
Monday- We went to the emergency room early in the morning. They quickly admitted her to an E.R. bed and ordered tests. Thankfully, her tests showed that the pain was from stomach ulcers, caused by the chemo and aggravated by too much stomach acid. A prescription and a couple liters of fluids did the trick and she was released that night.
Wednesday--CT Scan and other tests
Thursday- The doctor told her that the tumors are still shrinking. Yippee!! Blood levels have been low, so she is again under "transfusion watch" (my term, not theirs) which requires daily blood work and consultation with a nurse until further notice.
Friday--Transfusion of platelets, but she got home in time to pass out candy to the trick-or-treaters
Saturday--Feeling pretty good, she and Kara went to see the opera at Sam and attended a Halloween party afterward. She dressed as a Golden Fairy. Kara and Matt ran interference, keeping away all those who looked like they might be carrying germs. And the party's host made everyone use hand sanitizer. Way to go, Colin!
Sunday--None of us expected that her hemoglobin count would go too low today, so we came to the hospital for her lab work and consultation, fully expecting to be able to leave in an hour or two. Oops. Surprise! Instead, she was given two units of blood, and we got home about 9:00 pm.
Tomorrow--a heart scan is scheduled. One of the chemo drugs begins to damage the heart after awhile. It is time to start monitoring her heart for signs of such damage.

Routine

Today is Day 4 of Cycle 7. It's so strange to have a routine that centers around chemotherapy. It is strange that chemotherapy has become routine. Not easy, not fun, but, to a certain extent, routine. Five days before the cycle starts, Maura gets a shot. Three days out, a different shot. Then it's chemo week: Day 1, another shot. Each day I count off the pre-meds and the chemo that hang on the IV poles. Check. Check. Check. Check. Three days of a pill. Check. Pumps working in the chemo backpack. Check. Check. Two days with the red chemo in the backpack. Check. Four days with the two-liter bag. Check. Another shot on Day 5. Five days of drugs. Checkcheckcheckcheckcheck. CBC on Day 4. Check. Blood work every other day. Check. I chart the results. Check. CT-scans, x-rays, appointments. Check. Check. Check. Heparin nightly in both lines. Check. Check. Dressing change. Check.

Laying Low

It has been a pretty good week. Maura's sisters were in town for the weekend, so they had some good sister time together. She misses them very much.
It's been over a week since the transfusions. Her red blood cell count has stayed high (for her) while her platelets dipped again, but not too much. She has since turned the corner and the platelet count is on it's way up. White cells, too. Therefore, plans have resumed for Chemo Cycle 7. Injections on Wednesday and Friday and Chemo starting on Monday.

More Blood

Platelets. Despite the very new (FDA approved only as of late August) producemoreplatelets injections, Maura's platelets are once again down to transfusion level. So, after being here until about 11:00 last night for red blood cells, we are once again awaiting a transfusion of a different blood product. It's worth it. We don't want her to bleed to death. She has no symptoms, but her level is 8 (normal is at least 140), so she needs to be here.  Pray for the platelet drug to kick in over the next few days and for her levels to come back up on their own so chemo won't be delayed again.

Blood

Since the hurricane, we haven't had internet/cable, so I can't update as often as I might like. Today we've been at the hospital since this morning. Low blood counts meant weekend bloodwork. Hemoglobin of 6.4 (roughly half the normal level for a woman, and the lowest she's ever had)meant transfusion of red blood cells today. Mmm, yum. It takes about five or six hours for the transfusion, once we get in a room.  Still, even with such low blood counts, she is in good spirits, but very tired. 

Giggles

Chemo Days for Cycle 6 are finished! Hurray!! Maura tolerated them okay, and her blood counts yesterday were pretty good. She has platelets (yes!); she has white blood cells (yes!). She's still pretty anemic, but we're working on that. The hurricane caused some delays in her schedule and confusion about her treatment, but everything is straightened out now and we're back on track.
Ten days without power, and not seeing much else besides the house and the hospital can get to anyone, and Maura was a bit down. Last week, before chemo, when Maura found out she didn't have to show up at the hospital for a whopping two days in a row, and I found out that there was still no electricity at work, we took advantage of the free time and set out to visit Kara in Austin. That sure chased Maura's blues away! The girls giggled and laughed and played and talked and talked. And when we got back home, we had electricity!!! The perfect end to a perfect outing.

Platelets and Ike, Part 3

Ike has come and gone, and we are all fine. Still no electricity, and we lost our fence and banana tree, but the damage is so very minor compared to those on the coast who lost everything, or even to others in our neighborhood with trees that slammed into their houses. We saw pine trees snapped in half and large oak trees completely uprooted. It's a miracle that our flimsy windows did not break.

On the night of the hurricane, Joel had to stay at the hospital to work, so Maura and I laid up supplies in the bathroom and put our mattresses in the hallway before trying to sleep. We waited in total darkness, not wanting to use up our precious flashlight batteries. The hurricane brought such weird noises. We could hear the wind bending the windows and walls. We could hear the cracking of the pine trees--a bit like the creaking of stiff joints, but a lot louder. We heard branches, pine cones, and unidentified objects hitting our roof and rolling down. And, of course, we heard the howling wind and rain. When the eye passed overhead, it was quiet for awhile, and then the winds started from the opposite direction. Early on, Maura decided that the hallway wasn't where she wanted to be, so she took up her spot in the bathroom for the night.

The hospital's outpatient services were closed for four days, so the transfusion of platelets before the hurricane was a very good thing. During our visit with the doctor last Tuesday, he recommended a new drug to combat thrombocytopenia, a big word meaning that Maura has low platelets, in this case induced by chemotherapy. The drug, administered several days before chemo and immediately after, should help her platelet level return to normal faster, allowing her to stay on her chemo schedule without the delay caused by low blood counts.
So, in preparation for round Six, Maura had the helpherplatelets shot on Friday, and the preventmouthsores shot on Sunday, and chemo starts on Wednesday.

And we continue to be blessed, especially in Ike's wake.

Platelets and Ike Part 2

Yesterday, the decision about bloodwork was made for us. Dr. Benjamin told Maura that she had to go to MDAnderson regardless of how long it took us to return. As we drove south to the medical center in the morning, we saw that the northbound lanes of I-45 were already filled with the bumper to bumper traffic of evacuees. Oh, well--we would soon be part of that mess. Still, it was a good thing we made the trip in. Maura's platelets had dropped to 12. Since outpatient services at the hospital would be closed on Friday and Saturday due to Hurricane Ike, Dr. B ordered a platelet transfusion just to be safe (10 is the normal threshhold). We prepared for the long ride back to Spring after the transfusion, about 7 pm, and, to our surprise, I-45 was clear. Yippee!

We are prepared for the worst hurricane to hit Houston in at least the 21 years that we have lived here. Water, duct tape, food supplies, flashlights, gas in the car, Maura's medical supplies, a couple of good books. Joel has already gone to work at the hospital. Since Tropical Storm-force winds and rain are expected in our area tonight, about the time he gets off work, it's pretty certain he won't come home tonight. Maura and I would be allowed to stay at the hospital, but her white blood cell count is so low, that the hospital isn't necessarily the safest environment for her. If we get scared, this afternoon, we might go anyway. I'm very thankful that we are prepared, that we have close friends and neighbors to run to, if the need arises.
Of course, Danielle and Lydia's flights were cancelled. They were both in tears, not being able to come home to see Maura. And it's never fun to be far away when those you love are facing a crisis.
Pray for Houston and the surrounding area. Pray for the people with medical conditions that are compromised because of the storm. It's going to be a long weekend and a long recovery season.

Platelets and Hurricane Ike

Low platelets.  Even after her platelet transfusion last week, she still has a low platelet count--14 at last check, just 4 points away from transfusion levels. 

 The bad news is that, because of low platelets,chemo has been delayed for a few days.

The good news is that, because of low platelets, chemo has been delayed for a few days.

I've been doing a little research, trying to find foods that increase platelet counts, as well as hemoglobin and white blood cells.  thank God that we all love salad! Leafy greens, spinach, broccoli, and beans all seem to be on the list of great foods. Yum yum. Really, we do love those good foods and, frankly, I am the best salad-maker that I know. I can't cook worth a darn, but, oh, my salads are really tasty, if I do say so myself.  If you ever invite me to a pot luck, ask me to make a green salad.  For your own sake don't ask me to make a casserole--my brand of creativity and casseroles are not a good match.

But I digress...

Folic acid and vitamin K are the only things I've found that might (notice the italics) increase platelet count. Most sites seems to say there is nothing that can be done to increase platelets. What a sucky attitude-nothing can be done==of course something can be done. I may not know what it is yet, but, duh. 

So Ike is in the Gulf and flooding in Houston is an almost certainty. Sigh. So we have to figure out if we need to get Maura for her daily blood test today. We can get to MD Anderson without too much trouble today, but returning, we would be in the midst of heavy traffic due to coastal evacuations. We're not sure how bad it will be today. We don't want to get stuck on the freeway or risk getting in an accident (low platelets means no clotting which means bleeding to death) and we don't want to add to the congestion. So, decisions, decisions, how badly does Maura need that blood work today? At least we know that her chemo will not be interrupted this time because of a hurricane.

For those of you who live far away, know that we have never flooded or needed to evacuate. We don't live that close to the coast or in a low-lying area. So, don't worry about us in a hurricane. We just hunker down and wait for the electricity to go out, which it will. We're fine.

The hurricane itself will only be an inconvenience for us. Maura's two sisters were supposed to fly in for the weekend. Their flights may be cancelled. Bummer. And Joel is scheduled to work this weekend, but during a natural disaster of this kind, he usually has to stay overnight at the hospital, so we may not see him for two days. Double bummer.

 

Stand Up to Cancer

This evening the three major networks will jointly sponsor Stand Up to Cancer to benefit cancer research.  My only frustration is that I did not see sarcoma mentioned even once in the advertising for the event. It's just too rare--most people have never heard of it. Unfortunately for Maura and those also afflicted by this disease, the bulk of the funding for cancer research goes to the biggies: breast, colon, lung, prostate-carcinomas and lymphoma.  Nevertheless, I encourage anyone who reads this to watch the show. 

Transfusions

Maura had a couple of different transfusions over the last week or so. On the last day of chemo they gave her two units of red blood cells. Then, yesterday, her platelet count was so low (7) that they gave her 6 units of platelets.  Maura needs to go in for extra days of bloodwork until her counts come back up.  Platelets gave Maura an allergic reaction--not uncommon. Despite medication to prevent such reactions, she broke out in hives, her eyes puffed up, and she used a box of kleenex. 

You Know You Are Sick When...

You know you are sick when they put you to the head of the line in the emergency room.
Yesterday we spent about eight hours in the E.R. bececause Maura's fever spiked to 101.4. Once it hits 101 the MD Anderson protocol is "get thee to the hospital." I got to admit that I was a little nervous that they gave her a room so quickly. After all, the waiting room was full of people who had been there for much longer than the 15 minutes or so that we waited. To Maura's great joy, they discharged her at around midnight, allowing us to treat her with oral antibiotics. Blood cultures won't come back until tomorrow, but, until then, she'll sleep better at home than in the hospital.

Gratitude

I am reminded daily of the value of friends and family as we wade through this difficult time. Thank you. Okay, this is not a substitute for thank you notes. I know Miss Manners would never accept a blogged thank you note, and, quite frankly, I can't even begin to count the gestures of kindness that we have received. Visits, cards, vegetables, meals, miracles in envelopes, brownies and other treats, prayers, loaned dvds, books, cheer in a box, home-made posters, photos, agghhh...I shouldn't have started because there is no way I'll remember them all. It's not like wedding gifts , which are all opened at the same time, and are all tangible, and, while the bride and groom ooh and aah over each crystal candleholder, there's someone sitting behind them with a tablet and pen, writing down all the names and what was given. This isn't that organized--I'm not that organized. This is as random as the gifts we receive. I want to say thank you to the older couple that sends Maura a card almost every week. You should see how it puts a smile on her face. I want to thank her friends who would think I'm weird for thanking them just for hanging out at our house. I want to thank the friend who left my washed and ironed blouse hanging on my front door...I think I know how you got a hold of it, but I'm not sure. I want to thank the young friend who was so moved when she saw Maura in so much pain, that she actually bought and offered me...um...an illegal substance...in the hopes that Maura would take it to relieve her suffering. I want to thank that colleague at the college who understands that I just don't care about anything at work like I used to and who understands that it's a temporary condition. I want to thank the colleague who said that my newfound perspective is an improvement. I want to thank strangers who let us know that they are praying for Maura. I want to thank the young friend who, just a few weeks into remission herself, committed to be a friend to Maura (and all of us) and has been an amazing and steadfast source of knowledge and strength and black bean burritos. I want to thank those who can handle "bald in the land of big hair", and those who at least try. I want to thank God because he sends these hundreds of wonderful people as proof of his love.

Chemo Days for Cycle 5 are behind us. No life-threatening issues, although Maura did get a transfusion of two units of red blood cells yesterday. Fortunately, it was not under the same scary circumstances as at the end of chemo in Cycle 3. Nevertheless, it's disturbing that her red blood cell count is not recovering quickly. The transfusion has not perked her up as we might have liked--no burst of energy today. Instead, she is very quiet, too tired to engage in conversation.

My God, how I love this person.

Tired

We arrived home at 1:30 a.m. following Day 2 of chemo. The chemo units were very busy today, so we waited several hours past our appointment time before they could get us a room. In the meantime the pump beeped to let us know that the chemo bags were empty. I took care of it myself in the waiting room. Since Tropical Storm Edouard, I've become an expert at disconnecting her from the pump when needed. And that beeping sound...when this is over, I never want to hear that beep beep beep again. Maura came home exhausted, somewhat nauseated, but otherwise, okay.
She is losing her eyelashes. She has a single bottom lash left, and the top ones are thinned out. Small price to pay for tumor termination.

Amen

Today Maura had CT scans and a visit with her oncologist, Dr. Benjamin, chair of the Sarcoma Center of M D Anderson--a guy who's seen more sarcoma than almost anyone in the world. Today, Dr. B. told Maura that, in disease as extensive as hers, she is having one of the best responses to chemo that he has ever seen.
Thank you, God.
Amen. :)
p.s. Cycle 5 starts on Sunday.

By Popular Demand

Maura's chili recipe will be at the end of this post.

 It's been a quiet week.  Blood counts have been very low as expected, but they are starting to climb back up now.  The week has been predictable, which is good. When she felt bad, we knew why and we also knew that it was temporary. 

Here is Maura's vegetarian chili recipe:

1/2 medium onion, diced

1 can diced tomatoes

1 can tomato sauce (same size as the diced tomatoes)

1 can beans (red or black or kidney or your favorite)

1 pkg. Morning Star Meal Starter Crumbles (in the vegetarian frozen food section...looks like ground beef)

1 pkg chili seasoning

Sautee crumbles and onion on medium heat in a large frying pan.

Add other ingredients.   Stir over medium heat until hot. Serve. 

Optional: Serve with sour cream and grated cheddar cheese

Tastes good with a side of corn bread.

Wasn't that easy?

Just A Touch Of Bleh

There are reasons for taking anti-nausea meds.

Nice

Chemo days of Cycle Four are over. Hurray! This cycle went very smoothly, with the exception of the one-day delay due to Tropical Storm Edouard. Maura refused all the hospital-administered ant-nausea meds on Friday and some of them on Thursday. She felt pretty good, under the circumstances. Her blood pressure and heart rate have been "acceptable." Nice not to have any scares like last cycle. Thanks again to all for the cards and visits. They mean a lot to her-to us.

Cancellation

Day 3 of Chemotherapy is cancelled for Tuesday because of the impending arrival of Hurricane Edouard in the morning. Maura is hooked up to the pump. When the pump beeps tomorrow (when the chemo bags are empty), we will be at home instead of at the hospital. They gave her a quick lesson in how to disconnect from the pump, and then she has the rest of the day off. Chemo resumes on Wednesday(Day 3), both the pump and the "in hospital" drugs.  

Pretty in Pink

Maura and her friends having fun with wild wigs. Don't they look awesome?

Central Line

Today Maura had her central line reinserted into the superior vena cava. Everything is fine. It was a much easier procedure this time than in May.

Good Days

     The blissful days are coming to an end. We have enjoyed the extra time between the third and fourth chemo cycles, but now Maura has to get back to work.  Today she spent the day at the hospital. Tomorrow, too. Her central line will be re-inserted tomorrow. Chemo starts on Sunday. 

     She took advantage of her extra energy this week, after her blood counts went up, starting out slowly, with a trip to the movies. Then, a couple of short, focused shopping trips. The most draining activity? A few hours at the beach--the last time she will be able to totally immerse herself in the ocean or any water until after treatments are over and the central line comes out for good. The wildest day? Wig shopping and an evening out with her friends. Yes, she finally decided to wear a wig instead of scarves and caps for a change. So, she picked out the cutest wig, a short bob. Pink. Magenta, actually, and she looks fabulous in it. That evening, she and her friends went out to dinner. Maura in her pink wig; Katie in a green wig; Kara in a black , spikey Sharon Osbourne/Liza Minelli freaky wig. What a trio!

     

     

Sleeping

Parents will understand this. You know that perfect peace that you feel when you watch your children sleeping? It's a feeling that doesn't disappear as they grow older, and, I admit that I still cry when I think about the Munsch children's story Love You Forever. He captured that slice of joy in his simple tale. This morning I stood at Maura's doorway, studying her even breathing. She was splayed out, stomach to the mattress, arms and legs akimbo. How wonderful that she can, for a few days, sleep in her favorite position, without having to worry about tubes or chemo pump. And there I found myself softly singing the Munsch verse: I'll love you forever/I'll like you for always/As long as I'm living/My baby you'll be.

Sigh of Relief

     Things are so much better! Blood counts are way up. Feet and hands, less purple, less painful. She cooked a meal on Thursday. Yes, Maura's famous vegetarian chili accomplished so much more than just satisfy our hunger--it cheered our hearts and comforted our souls. Oh, and we went to a movie last night. That, too, was wonderful.  Right now, every activity, every smile, every moment gives us so much joy. I hope that even after she is cured, that this heightened sense of appreciation for life stays with us all forever.  

     We still don't know when the central line will be reinserted or when the next chemo cycle begins. Should be sometime next week.  Maura is basking in the freedom from tubes and toxic drugs.   

I (we) Told You(them) So

Maura's central IV line has been taken out and will have to be re-inserted. After two months of telling "them" that it leaked, and having them check it three times and telling us that it didn't, it turns out that we were right. At first we thought that I wasn't doing a good job of putting a protective layer of plastic over it when she showered; then we thought that maybe she just sweat a lot; but we quickly realized that the darn thing leaked for real. Today, Maura talked to the IV therapist who we've known all along to be the most competent one they have, and she knew just by Maura's description what the problem was. "Oh, you have a duct leak." Yep, when she had the catheter inserted into her vein in May, they apparently punctured a lymph duct, or something like that, and it never healed on it's own. The doctor immediately agreed (I don't know why we never told him about it) and will schedule a new date for her CVC insertion when her white blood cells and platelets go back up. In theory, the frustration of this not having been caught earlier should be completely dwarfed by the immense satisfaction of being right. Unfortunately, Maura has to suffer because of it, so the satisfaction is short-lived. She's determined that this time she's going to ask to be put to sleep (in the unconscious sense, not in the veterinary sense) during the procedure. As usual, her attitude about the whole thing is great, and she's happy not to have those tubes hanging on her chest for a few days.

Feeling Better

She's feeling better tonight. When she feels good, it's just easier to deal with anything, including endless blood tests!  She blew off the blood tests she was supposed to have both yesterday and today, but can you blame her? She has to be at MD Anderson so-o-o many days that even a weekend off is a luxury she treasures.   Tomorrow she'll be back on track for blood work. We expect blood counts to be at safe levels later this week. 

She can't walk much. The burning foot has turned into burning hands and feet==it's like a bad sunburn from the inside out.  The right foot is a mottled red and purple. Anytime she walks or puts pressure on her hands, you can actually see it get worse. So she stays in one place most of the time, and we treat her hands and feet with hydrocortisone and lotion. Adam carried her to and fro for a couple of days. That was kind of fun to watch. Did anyone see the episode of Arrested Development where Martin Short is carried around by some guy named Dragon? It was sort of like that for Adam and Maura. Just kidding. 

Sigh

Fever of 100.4. Burning feet. New pain med that makes her throw up.  Feeling yucky. Leaky IV port. Blood count is low all around. 

Platelets are too low, so they want her to go in for daily blood tests over the weekend. She's thinking about it--she's thinking it sucks.

Things will be better on Monday. 

Burning

Oh, joy. A new side effect:

The sole of her right foot burns as if she had stepped on hot coals. Just the right foot. Just the sole. Weird.

White cells are down to 0.1, so no visitors for a few days.

From Jesus' Side to Maura's Veins-John 19:34

So, yesterday was supposed to be a simple disconnect-from-the-chemo-pump day, which isn't so simple anyway. Instead, we got home this morning at 2:30. When her blood pressure plummeted to about 50/30 (yes, you read that correctly), and her heart rate hovered around 130, they pumped her with fluids, gave her two units of blood (her first blood transfusion), and, later, hooked her back up to the pump with a nice three-liter bag of fluids with electrolytes to take home. Unfortunately, her hospital-free weekend is out--we have to go back both tonight and tomorrow night for another big bag of fluids for the pump. Oh, and the catheter site has a little infection, so that means cultures and blood tests and daily dressing changes and multiple visits to IV Therapy this coming week. I'd like to say that the blood perked her right up, but she is too exhausted to tell. Her blood pressure did go back up to an acceptable level, and her pulse is normal. Today, we have so much to be thankful for.

Crummy

It's been a rough couple of days.  Round 3 is causing her to feel pretty crummy.--really bad, in fact. We're at the hospital now. We came in this afternoon for the last of chemo, and to get disconnected from the chemo pump, and to receive her post-chemo meds, but her blood pressure was very, very low and  her pulse rate was very, very high---a treacherous combination--so they're not too anxious to clear us out of here just yet. Sigh. 

Round 3

Here we go again. Round 3 of Chemotherapy starts in the morning. 

Normal

Oh, how we long for normalcy. Through any crisis, I suppose our perception of normal changes; so, too, our perception of good news or hope.  This week Maura received a healthy dose of all three. As I mentioned in the last post, her CT scans from Monday showed continued improvement.  And she has had more energy during this post-chemo period than the last one, at least during the day. So, on Wednesday, Maura went to a morning movie (Hancock-- Maura commented that the movie was "just okay", but that it had been so long since she had been to a movie or to anywhere other than the hospital that the excursion was great). On Thursday, she made it through a daytime Astros game (a disappointing performance by the Astros, but, a stellar effort by Maura). With the help of close drop-off points, a wheelchair, a discreetly worn mask, convenient benches, a makeshift bed in the van, some planning, and the help of family and close friends, Maura enjoyed herself, got some exercise and a little sunshine, and drew encouragement from normal. 

Today she begins pre-chemo treatment, and Round 3 is upon us, which is not yet normal, but certainly it's good news and hopeful. 

CT Scans

Results of yesterday's CT Scans are in: Tumors are still shrinking! Hurray! Seeing the side by side comparison of the scans--before and after pictures, so to speak-- is very encouraging. 

Platelets are low. If blood tests results are better this Friday, July 4, then she'll start chemo prep for Round 3 on the same day.  Aggressive treatment for aggressive tumors. 

We thank you for all the prayers and visits and help and cards and concern. We are blessed in so many ways.

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.

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.