Monday, December 27, 2010

Mystery Jar **UPDATE**

We woke up Christmas morning to find this on our doorstep. It’s a mason jar with cash in it. The money is in mixed bills and change. We haven’t counted it yet. There are no identifying marks.

We have no idea where it came from. The older kids had some ideas. Our 11 year old son believes it came from one of our neighbors. In an act of charming localism, he guessed our next door neighbor. Our 14 year old figured it was someone else in town that had heard about Maggie’s cancer and knowing how expensive treatment is, offered some of their savings. Someone suggested a club or small church.

A few details might help. The bills were stacked, folded in half and put into the jar neatly. This was neither a haphazard savings nor an impulsive act. The Mason jar seems important: they didn’t cut a check or trade up to bigger bills. What they had they counted and gave to us.

One thing I am sure of: the fact that it was an anonymous offering is very important. It means to me not so much that one person or one group of people is merciful and generous. Since we can’t be sure to whom we should be thankful and since we must be thankful by our God given nature, we are thankful to everyone. The mystery jar means the world is more merciful and generous.

Do you have any creative theories where this might have come from?

**UPDATE**: I think we might have found a clue.

Wednesday, December 22, 2010

How to Lift Spirits with Only Fire Trucks and Santa

We heard a rumor that we should perhaps expect a special visit at home this evening. Sure enough, I had just returned from Adoration and was supervising three year-old Pete playing Bath Time Dinosaur (Leopluradon Edition) when I heard the rumble of diesels out front. Kate hurried Pete into his jammies as we scrambled to the porch to find three fire trucks and two ambulances from the West Point Volunteer Fire Department parked out front with lights blazing.



Off the ladder truck hopped Santa himself with two elves and a half dozen firefighters. They all strode decisively toward the porch, hands full of bags and boxes. Before Santa could reach the porch, Pete began to yell 2" from my ear, "Santa, SANTA I WANTA CROCODILE IN A SWAMP FOR CHRISTMAAAAAS! CROCODILE IN A SWAAAaaAAAMP! ChristMAAAAssssSS!"

He was really cheerful, but unintelligible to anyone but me with the trucks and radios and Christmas greetings and whatnot. Santa, a 22 year old professional that looked awfully like the father of the famous Seeterlin Twins said just the right thing: "I'll make a special request for you!"

 Mollified, Pete sank into Fire Truck Ecstasy while Santa passed out gifts for every kid and a big plate of baked goods for Kate. They even included a card signed by the entire company. Awesome. After a few hearty Merry Christmases they rolled out lights and sirens to the next act of corporal mercy. Brilliant. The visit left everyone beaming and happy.  What a great thing to do for a sick kid! Thank you WPVFD!


And More Good News!

Today was completely med-free!

With the successful completion of induction (the initial four week phase of treatment) we've had a weekend off from our twice daily meds routine. Yet, at least a couple of times a day, Mags has required Tylenol to relieve pain in her lower back. But today - nothing!

Today also saw her designing clothes with Veronica, coloring pictures for Christmas gifts, playing peek-a-boo with Ellie, crawling upstairs to watch movies with her brothers and sisters (she's a bit weak due to loss of muscle mass), and making up jokes. The joke of the day? "Why did Sally take a construction worker to school? Because she wanted to go to HIGH school."

This is huge. Until last Friday, we had been giving her dexamethasone (a steroid) twice a day to kill off lymphocytes. We'd been warned that it would make her extremely emotionally labile, but instead of the irritability and rage that we expected, we ended up with what looked like severe depression. Apparently, Maggie tends toward the "steroid blues" end of the spectrum.

We made a comfy bed for her on the living room couch, and that's where she has spent the majority of the past four weeks. Despite our best efforts, all she wanted was to lay there and pick at the peeling skin on her hands.

The only way we were able to engage her was with food. Up until now, Mags has - by choice - lived a pretty carb heavy existence. And the sweeter the better. Furthermore, she has been a sloooooow eater. I kid you not, I have watched two hours tick by as she has worked on half a bagel.

As soon as she had a couple of doses of dexamethasone on board, she became consumed (pun totally intentional) with food. Weekly meal planning (the bane of my existence) has taken no more than five minutes; Maggie has let me know exactly what she wants and when she wants to have it. And what she wants is typically protein-rich and rather salty; we've become frequent visitors to the local Chinese restaurant. One order of fried potstickers will see Mags through a day and night. The kid eats 24 hours a day. As Gus already mentioned, she visits our bedroom at least a couple times a night with requests. And when she has food in front of her, her whole being is focused on getting it into her body; she's a machine.

When she's not eating, she's thinking about eating. She recalls, in great detail, the favorite meals of her short existence. She considers how the less savory meals could be made better. We catch her making little mmmm mmmm sounds as she muses. After waking from anesthesia, her primary concerns are whether she should have sushi or cheese ravioli. Gus and I were discussing buying Ellie a high chair, and Maggie was completely taken with the idea of a pie chair. "So would this chair be made out of pie, or made for eating pie?" I queried. "Whatever," she replied. Pie was just the operative word.

A few days off steroids and we can already see her transitioning back. Her curiosity was piqued by a television advertisement for Lindt chocolates. Four of yesterday's order of potstickers remain in the fridge. Tonight at dinner, she ate twice as many bites of egg noodles than pot roast.

In the future, we'll be having short bursts of steroids as opposed to 30 day jags. We are grateful.

(During the writing of this post, I had to wake Maggie to eat, as she is NPO after midnight due to a spinal tap tomorrow. As she ate her spaghetti (with real parmesan, please), the pain in her lower back became more than she could stand. She received Tylenol with codeine at 11:57. And that's okay.)

Tuesday, December 21, 2010

Some Good News


Dr. V~ called to let us know that the Minimum Residual Disease measure was back from Johns-Hopkins. The MRD indicates the percentage of diseased cells left in Maggie's bone marrow after the initial or induction phase of chemotherapy. Less than 5 percent indicates remission.

Maggie's number: <0.01%

So far so good.

Monday, December 20, 2010

Girlie Hats!

Our friends Mike & Tina sent Maggie four hats made by the wife of a pastor of their acquaintance. I caught her doing eenie-meenie-meinie-mo with them and asked her to start over. You can see how much she has recovered her mood in 24 hours. In case you didn't notice, this was not a strictly empirical eenie-meenie-meinie-mo:


video

Sunday, December 19, 2010

Solidarity

Did I mention we have a bunch of baldies in the house now? Maggie's hair was getting thin and so she and Kate asked our friend Honi to shave their heads close. I was ambivalent, but figured Kate knew what she was doing. And she did.

The results are beautiful. And Maggie is already starting to leave her hat off now and then.

Update

Maggie made it through the Induction stage of chemo last Friday. She had both a lumbar puncture and bone marrow aspiration done in addition to the full run of labs she gets weekly. The treatment team is hoping to have her in remission as she begins Consolidation, which will focus on her spinal fluid. The oncologist will look at her bone marrow on Monday. The draw from her spine was sent to Johns-Hopkins to check its status.

Maggie is glad to see the powerful steroids stopped for now. She took them like a champ (though sometimes a quietly whimpering champ) twice a day for the first 28 days of treatment. They made her face swell, her hair fall out, her trunk puff up and her muscles waste. She became shaky and unsteady, depressed and irritable. Her palms peeled from the stress on her body. But she motored through. Good kid.

On Saturday morning she awoke pretty cheerful. She said to me, "I woke up thinking that there was an unmarked gift left for us. I knew that it was left by the Holy Family."

Surprised I asked, "What could the Holy Family give us that they haven't already?"

"I don't know. It's a secret gift."

Can't say I understand what this was about, but I like the sound of it. I don't want to make too much of such conversations, but it was sweet and faith filled and optimistic. She then asked for a pot sticker, her current favorite all-hours snack. "Mom runs it 15 seconds on high," she reminded me, as if I hadn't done this three times a night for the last week. The week before it was baked ziti.

Thursday, December 9, 2010

The Purple Meanies


What we're looking at here (if you couldn't figure it out from the labels) is normal bone marrow versus leukemic bone marrow.  Sorry about the crappy photograph of a photocopy; our scanner is beyond my technological abilities.  And it humiliates me to have to ask my 14 year-old to explain it - again.

I'll try to explain this to the best of my ability; please try and remember that all of my medical training has come from watching ER and House.

Top left:  This is normal bone marrow.  The pink circles are red blood cells. The purple ones are immature red and white blood cells, as well as the differentiated mature white blood cells.  They have been stained by the pathologist.  (Fact:  immature blood cells are larger than their adult counterparts.)

Top right:  This is a smear of normal bone marrow.  The big white areas are just air bubbles on the slide.  (I'm assuming.)  Again, the red/pink circles are red blood cells.  The purples are immature RBCs and and the various WBCs.  Hard to tell, but there are a bunch of different shapes and sizes.  In this healthy bone marrow, only 5 percent of the total cells are immature WBCs, or blasts.

Bottom left:  The purple blobs this time are leukemic blasts.  They are WBCs that remain immature, multiply continuously, and provide no defense against infection. 

Bottom right:  Again, the purples are leukemic blasts.  A diagnosis of leukemia can be made if more than 25 percent of the blood cells in the marrow are blasts.  When these blasts multiply without check, they fill the marrow, preventing the production of healthy RBCs, platelets, and WBCs.

The bottom pictures are of Maggie's marrow at diagnosis.  It's the most gut-wrenching feeling to find out that what you think are textbook pictures are actually pictures of your daughter's normal bodily processes gone awry.

Pretty indisputable proof that Maggie is sick, but I find that I'm still having trouble accepting that she really, truly is.  From what I've read, there are a number of typical emotional responses experienced by parents - much like those in the grieving process.  It's not so much a smooth evolution from confusion to hope, as it is a wild vacillation from one feeling to another.  So far, I seem to be spending an awful lot of my time in denial.  Aside from her swollen lymph nodes, Mags wasn't exhibiting any of the typical leukemia symptoms; she only really started looking and feeling sick after we began treatment.  Could we have made a mistake?  Are we unnecessarily bombarding her body with medications, and then more medications to counteract the harsh effects of the first medications?

I know. <sigh> I know.

Tuesday, December 7, 2010

Maggie's Leukemia, or Common Precursor B Cell ALL

We have been greatly informed by Nancy Keane's book Childhood Leukemia: A Guide for Families, Friends, and Caregivers.  The following information is taken directly from the second chapter of her book because I certainly couldn't write anything half so comprehensive and accessible.

The word leukemia  literally means white blood.  Leukemia is the term used to describe cancer of the blood-forming tissues known as bone marrow.  This spongy material fills the bones in the body and produces blood cells.  With leukemia, the bone marrow creates an overabundance of abnormal white cells.  As the bone marrow becomes packed with these abnormal cells, they crowd out all the healthy cells that are needed for blood to do its work, and symptoms of the disease begin to develop.

Blood is a vital liquid that carries oxygen, food, hormones, and other necessary chemicals to the body's cells.  It also removes toxins and other waste products from the cells.  Blood helps the lymph system fight infections and carries the cells needed to repair injuries.

Whole blood is make up of plasma - a clear fluid - and many other components, each with a specific task.  Blood also contains three types of blood cells (red blood cells, platelets, and white blood cells), all of which are affected by leukemia.

Red blood cells (erythrocytes or RBCs) contain hemoglobin, a protein that picks up oxygen in the lungs and transports it throughout the body.  RBCs that contain oxygen give blood its red color.  When leukemia cells in the bone marrow slow down the production of RBCs, anemia develops.   Anemia can cause tiredness, weakness, irritability, pale skin, and headaches - all due to decreased oxygen being carried to the body tissues.

Platelets (thrombocytes) are tiny, disc-shaped cells that help form clots to stop bleeding.  Leukemia can dramatically slow down the production of platelets, causing children with the disease to bleed excessively from cuts or from the nose or gums.  Children with leukemia can develop large bruises (ecchymoses) or small red dots (petechiae) on their skin.

Healthy white blood cells (leukocytes or WBCs) destroy foreign substances in the body, such as viruses, bacteria, and fungi.  WBCs are produced and stored in the bone marrow and lymph nodes.  They are released when needed by the body.  If an infection is present, the body produces extra WBCs.  There are three main types of WBCs:
  • Lymphocytes.  The two types of lymphocytes are T cells and B cells.
  • Granulocytes.  The three types of granulocytes are neutrophils, eosinophils, and basophils.
  • Monocytes.
The different types of leukemia are cancers of a specific WBC type.  For instance, acute lymphoblastic leukemia affects only lymphocytes.

Blast is a short name for an immature WBC, such as lymphoblast or monoblast.  Normally, less than 5 percent of the cells in healthy bone marrow at any one time are blasts.  While in the bone marrow, normal blasts develop into mature, functioning WBCs and are then released into the bloodstream.  Therefore, in healthy people, blasts are not usually found in the bloodstream.  Leukemic blasts remain immature, multiply continuously, provide no defense against infection, and may be present in large numbers in the bloodstream and bone marrow.

When abnormal blasts appear in the bone marrow, they multiply rapidly and lose their ability  to develop into normal WBCs.  They begin to crowd out the normal cells that grow from helathy blasts into mature WBCs.  After accumulating in the bone marrow, leukemic blasts spill over into the blood and, if left unchecked, may invade the central nervous system (CNS), which includes the brain, spinal cord, and other organs.

When leukemic blasts begin to fill the marrow, production of healthy RBCs, platelets, and WBCs cannot be maintained.  As the number of normal blood cells decreases, symptoms appear.  Low RBC counts cause fatigue and pale skin.  Low platelet counts may result in bruising and bleeding problems.  And if mature neutrophils and lymphocytes are crowded out by blasts, the child will have little or no defense against infections.

Leukemia is described as either acute (progressing quickly) or chronic (progressing slowly and usually involving more mature cells).  The acute leukemias, which comprise about 95 percent of all childhood leukemias, are further divided into acute lymphoblastic leukemia (ALL), in which the cancerous cells are lymphocytes, and acute myeloid leukemia (AML), in which the granulocytes or monocytes malfunction.

Seventy-five percent of all children with leukemia have ALL.  It is caused by a rapid increase of immature lymphocytes (lymphoblasts), which would normally have developed in to mature WBCs.  There are several subgroups of ALL, which are based on whether the cancer cells developed from cells that would have become B cells or T cells.

Maggie has common precursor B cell ALL.  The majority of children with B-lineage ALL have this type, which carries the best prognosis of all types of  ALL.

Our Story Begins...

I don't immediately recall the exact date because, at the time, it didn't seem important that I should.  I think it was the Wednesday or Thursday following Halloween, because in chatting Maggie up, the doctors, nurses, and lab techs all asked her about her costume.  (A fairy princess.)

That evening, Maggie mentioned that she had pain behind her right ear.  When we looked, we found that two or three lymph nodes were quite swollen.  This wasn't too concerning; I have seen, and had, swollen lymph nodes due to viruses and allergies. But the number, combined with her discomfort and that only her right side was affected, gave us pause.

First thing the following morning, we made an appointment with our pediatrician.  Dr. A examined Maggie, concentrating on the chain of lymph nodes running from behind Maggie's right ear down to her collarbone. Aside from this, it seemed no different than any other appointment that we'd ever had - until she called in another pediatrician who proceeded to give the same attention to Maggie's lymph nodes. This made me a little nervous.

Dr. A asked us to go to the hospital for some blood work and then return to the office that afternoon so that she could go over the results with us.  I called Gus from the nurse's station and he made plans to meet us.

There were some abnormal white blood cells, Dr. A told us, but they were probably reactive - enlarged due to stimulation from a virus.  I didn't really know what she was talking about, but I felt reassured.  Gus, who is exponentially more savvy than I, heard what wasn't being said.  He asked about the possibility of cancer.  Dr. A said that Maggie wasn't showing any other symptoms, but she wanted to follow up with more blood work and an appointment on Monday morning.  (Can I even begin to express how much we love Dr. A?)

Over the weekend, Maggie's nose started to run.  We were so relieved to have a sick kid!  It would seem that this was nothing but an ordinary virus.  But then the runny nose disappeared and the swollen lymph nodes remained - and increased in number.

Over the next couple of weeks, each smear of Maggie's blood turned up roughly the same number of abnormal lymphocytes.  Dr. A consulted Dr. V, a pediatric hematologist-oncologist, at Children's Hospital of the King's Daughters.  Together, they decided that we should bring Maggie to the hospital for further testing on the morning of November 18.

This new round of blood testing showed the same lymphocytes and, a new development, anemia.  The decision was made to aspirate some marrow from her hip.  This was about noon.  Gus and I were told that a diagnosis would come back in a couple of hours.

At four, Gus was studying in the clinic room that had been made available to us for the day, and Mags, Ellie and I were goofing around in the play area.  Bryan, the child life specialist, approached with a nurse and offered to watch the girls while Gus and I met with the doctor.  That we were to receive the results without the girls seemed ominous.  By the time I made it back to the room, I was panicked.  Gus clearly had the same sense of foreboding; why else would the test results take so long to return?  I started to cry.

Dr. V finally entered, along with a social worker, a medical student, a nurse (soon to be Maggie's nurse), and extra chairs.  (When they bring in the chairs, you know it's bad.)  And that's when we found out that Maggie had ALL.



To Share

Shared joy is double joy, shared sorrow is half sorrow.  ~Swedish proverb


Yesterday morning, Gus wrote an email to our families updating them on Maggie's treatment.  While the email was quite comprehensive, we found that our list of recipients was not.  Throughout the day, we thought of more people who would probably like to receive the same information.  So, instead of creating the longest contact list in the world, we thought it better to start this blog.  Please come and get the latest news and feel free to ask questions or leave a comment.

Gus' original update:

Dear family & friends,

Executive Summary:
Maggie is acclimating as well as can be expected to a myriad of medications and procedures used by her awesome CHKD oncology team to treat her leukemia. As a family, we feel blessed. We are especially thankful for all of your prayers and help.

The full version:
Yesterday we went to Maggie's weekly chemo appointment in Norfolk. This is her second outpatient trip and it was day 15 of treatment. That daily method of keeping track of where she is in her treatment facilitates specific medication schedules. (Some of the chemo meds are given just once or once a week or days 4 and 8, for example.)

These visits go something like this: Before we leave the house at around 7:30 we give Maggie her morning meds and apply a pile of lidocane cream to the port site and cover it with a plastic dressing. Like as not, she has not been able to eat or drink from the previous evening. We drive the 65 miles to CHKD and check into the clinic at about nine. Maggie gets vitals done and they access her portacath. Maggie is pretty emotional at this point, as she has been dreading these procedures. Once the port is accessed and morning labs drawn, she seems to relax. This anxiety and the tears involved are largely side effects of the strong daily steroids she's taking. Some kids get really irritable. Maggie gets insecure and emotional. Another side effect she is currently feeling is joint pain, specifically in her lower back. It's pretty bad.

After the morning labs come back, the team makes a decision about how to treat that day. Last Friday her sodium level was low. This necessitated another run to Norfolk on Monday for an additional lab draw.

Yesterday she got something new. Because of a low hemoglobin count, she got a blood transfusion. The nurses listened when I suggested that hanging a bag of blood on Maggie's IV pole was likely to weird her out. The pole came out shrouded with a sheet onto which they had drawn a wacky face with a sharpie. They referred to it as red medicine at first. As you know, it came from one of you, albeit indirectly. What a gift, no?

A lot of the medication is designed to ameliorate the effects of the chemo. Joint pain gets acetaminophen with codeine. Suppressed immune system is supported with strong prophylactic antibiotics. She's taking a mild laxative. She's taking a break on an antifungal mouth rinse (for thrush).

Other side effects: she's hungry all the time. She has vivid ideas about what she wants to eat next. This can be charming, e.g. "Can we have stew over egg noodles that have been buttered?"

She's also really tired and flat of affect. Her hemo-oncologist, Anthony Villella called this steroid blues. It looks like deep depression. Yesterday we spoke of prognosis for the first time. The type of leukemia Maggie has, B-type Acute Lymphocytic Leukemia, is both the most common and the most treatable. There are a number of factors which affect prognosis within this type of cancer. In her favor are her age (neither very young, nor older than 10) and her relatively low lymphocyte load at diagnosis. Against her are the type of mutated lymphocytes found in her bone marrow. They are not the most challenging, but not the most curable. Also in her favor is the way she is responding to chemo. Things can go badly, no question. Infection is a real danger at any point in the process.

CHKD is an amazing place. Everyone is beyond helpful and very kind. They don't mind the tears and look out for our comfort the entire time. They give us as much information as we can absorb and are genuinely appreciative of our curiosity. They take our calls cheerfully and are really focused on Maggie.

The first 28 days, called induction, is an effort to hammer the mutated leukocytes and put Maggie's cancer into remission. The next period is called consolidation, designed to target specific aspects of the specific abnormal cells. Those two periods comprise 8 weeks of the 28
months the entire treatment, barring relapse, is projected to take. This is a marathon. Always wanted (in the abstract) to run one of these. Didn't expect to be carrying this much or for the stakes to be so high.

We appreciate every prayer, every bit of help and offer of help, every positive thought, gift and card. We are impressed by your collective capacity to love suffering kids. We are thankful for the moment, for you all, for Advent, for each day, the blessed and the disappointingly rasty. There are times when we feel like the most blessed family in Creation and days we feel bleakly behind in every little thing. We suspect many of you feel the same. We pray for you all every day. We are committed to seeing God's hand in every step of this path. Sometimes we are going to need your help to illuminate the way.

Thank you, thank you, bless you!

-James & Kate