Sunday, October 31, 2004

So does this make any sense to you?

What I learned about Methotrexate while wating for Trick or Treaters and wondering why the college girls across the street only drive BMW's.


The CA name for methotrexate is: N[4-[[(2,4-diamino-6-pteridinyl)methyl]methylamino]benzoyl]-L-glutamic acid. The CA registry number is 59-05-2. Common synonyms: Mexate, Methylaminopterin, Emtexate, Metatrexan, Methopterin, MTX dihydrate, Folex, Folex PFS, Amethopetrin.
Methotrexate is an antineoplastic, an antirheumatic, a nucleic acid anti-metabolite (like 6-MP,above), and a "folic acid antagonist".
Hmm, folic acid, a necessary nutrient. Let's see, here's folic acid, let's compare:
folic acid
You can see that the nitrogen group has a CH3 on it and there is an OH group in the double ring instead of an NH2 group. Enough to make a difference in a biosynthesis scheme!
At two stages in the biosynthesis of purines (adenine and guanine) and at one stage in the synthesis of pyrimidines (thymine, cytosine, and uracil), one-carbon transfer reactions occur which require specific coenzymes.These coenzymes are synthesized in the cell from tetrahydrofolic acid. Tetrahydrofolic acid itself is synthesized in the cell from folic acid with the help of an enzyme, folic acid reductase. Methotrexate looks a lot like folic acid to the enzyme, so it binds to it thinking that it is folic acid. In fact, methotrexate looks so good to the enzyme that it binds to it quite strongly. All the folic acid reductase enzymes in the cell bind merrily to the methotrexate and ignore any folic acid they might see. Thus, DNA synthesis cannot proceed because the coenzymes needed for one-carbon transfer reactions are not produced from tetrahydrofolic acid because there is no tetrahydrofolic acid. Again, without DNA, no cell division.
Most of the parents of cancer kids have been told not to give folic acid supplements during chemo since it interferes with the action of the methotrexate.
Methotrexate has a general toxicity because it affects all rapidly dividing cells, such as those in the intestonal mucosa and prevents the production of tetrahydrofolate from folic acid in all tissues. Tetrahydrofolate is a necessary compound in many biosynthetic pathways, not just the synthesis of DNA. One of these is the synthesis of L-glutamate. One parent told us that her oncodoc recommended glutamic acid supplements, and that they helped her child immensely. Makes sense.
Also listed by the hospital: the possible adverse effects of this drug are mouth lesions in the form of painful patches on the lips, gums and mucosa of the mouth. These clear rapidly with stopping the drug. Along with mouth ulcers, there can also occur ulceration of other parts of the digestive tract with abdominal pain, vomiting and diarrhea. This drug can depress the bone marrow, which leads to a depression of white blood cells, platelets, and red blood cells.
Which means that they will be monitoring your child's CBC. With high doses of methotrexate, they will monitor fluid intake and urine output closely. Leucovorin is a medicine that may be prescribed. Leucovorin is an antianemic and an antidote for folic acid antagonists. Leucovorin is the active form of the B complex vitamin, folate. Another name for Leucovorin is folinic acid: the very name I found in a biochem text - it said that it could help alleviate the effects of methotrexate! "Leucovorin is used as an antidote to drugs that decrease levels of folic acid. Folic acid helps red and white blood cell formulation and the synthesis of hemoglobin. Some treatments require what is called leucovorin rescue, because the drug used to treat the cancer or other infection has had an adverse effect on folic acid levels. Leucovorin is used to reduce anemia in people taking dapsone, a preventive treatment for PCP. Leucovorin is also used in combination with chemotherapy such as methotrexate." (The words in "" are from the link on Leucovorin given above.)
References: Biochemistry texts, Web sites (various).
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We are stuck in Day 27

Mary-Elizabeth is stuck on day 27. Karyn, our Nurse Practitioner, made us these really great treatment calendars. I have them out to October of 2005 when her intense part of treatment ends. They out set in great detail, the treatments M-E will receive from now until the her last dose of Prednisone on October 8 2005. I have color coded the calendars and have relied on them to organize my life. Unfortunately, there is fine print. Each stage of chemo creates a problem for M-E's bone marrow. Her marrow has to recover to a certain extent in order to continue. There seems to be no magic alixer. No magic pill. Time, time and more time.

We have found that being stuck has some benefits associated with the wait. M-E was able to go to school for a few days last week. She and Whitney were able spend the day at our house and then come to the office for a pizza party. She loved seeing everyone! Rhonda made her day with a ghost and she received lots of hugs and good wishes from evetyone. It was great.

She was able to spend the night with Verhoffs and I was able to go to a nice adult dinner. I even was able to go to church.

The best part is what she said: Mom, I feel great. I know that after all the treatments, I will feel like myself again. I will have energy and will feel like laughing. People won't know I have luqemia. Lots of people think this is my hair!

Keep us in you prayers. We won't be here for too much longer. We might reach day 28 Tuesday. 8 Ara-C, 2 Vincristine, 3 Asparagus shots and a dose of Cytoxan, 14 doses of Mercaptopurine and lots of time..............

Thursday, October 28, 2004

Things I Hate

1.I hate that I don't know what the day will bring. Each day I have a plan. It involves work and taking care of the house and the laundry and yard and some fun stuff. Right now I am going to go take a shower and get ready for work. I am going to get M-E up and take her for quick blood draw and then to school. I am going to my office and then to a meeting. Then I am going to go home and fix something for dinner and go to a meeting at the hospital and then come home and hook M-E up to an IV pump for the night. Seems simple and straight forward but then there are bumps in everyday. She might not be able to get up. She might have a fever. We might not get out of the hospital and be trapped for days at the hospital.

2. I hate HIIPA. Johnny has a new job and we have a new health insurance policy. M-E just was added. Guess what????? they think they cannot talk with me. Evidently if I learn if Children's Hospital is in the network the world will come to an end. If I can get them to assign a case manager to our case, I won't be able to talk with that person. Evidently if my daughter needs Zofran my discussion about her need violates some driving and necessary life force that will harm the universe.

3. I hate Leiquemi and how it has hidden "Normal" and won't let us know where to find it. Maybe Normal was sort of like the Weapon's of Mass Distruction. Maybe Normal was a myth. Maybe it never existed. Maybe we just thought we were being "NORMAL" Maybe Normal becomes something different for everyone. Maybe Normal is new all the time. I thought it was Normal to scream at your child: Get your hair out of your eyes!!!!! Now I scream: Get your hair out of the cereal!!!!! I thought Normal was trying to keep your middleschooler off the phone instead of trying to encourage her to talk with a friend for even a few minutes. I thought Normal was trying to stay away from McDonald's instead of begging her to eat a french fry. I thought Normal was to discourage your child from drinking soda not pleading with her to do so.

4. Most of all I hate that I have developed a whole new understanding of Medical Language. Shots are now injections. Infusion therapy = IV's. Protocols and Road Maps = what we are going to do next. Salad Bars = Death Traps. Methotrexate, Cytoxon, Ara C, Vincristine, Daunarubison, Doxarubison, Prednisone, Zofran, and a lot of other poisons are your friends. I hate that I know how to handle short term side affects. I hate that I can start an IV. I hate that I can flush a PIIC line. I hate that I know what a PIIC line is and how it works. I hate that I have this BLOG about my daughter. I hate that Mary-Elizabeth gets to Make a Wish.

5. I hate leukemia. If you are going to discover that you have something rare, why couldn't it be the Hope Diamond in a box in the basement?

She is up and we are heading out the door today. So on a good note. I love that the day is going to start as NORMAL.

Wednesday, October 27, 2004

Waiting

There are lots of thing we wait for in this world. We wait for holidays. Christmas being the most exciting. Of course the world knows I am a bit of a nut. I have "too much Christmas Crap!" Sayeth Mary Lanham. She is probably right because Moms are always right but I love Christmas. Ironically it was having Mary-Elizabeth who made me scale back for a number of years. Too much too soon just made the season crazy. Kids need little bits and not a full blown crazy time. They need to have things calm or they just go crazy and get out of hand. There can be too many presents and too many events and too much candy and too much excitement. We are going to do a great job decorating. I am going to gather the troops and I think we have to put lights outside in every possible place. M-E loves the outside lights. We are also going to dig deep in the "Christmas Crap" and bring out lots of things that have not seen the light of day for a long time. If there ever was a year. We are unearthing the decorations. I think the village is making an appearance also. Of course I wonder if I can have a live tree in the house? I do remember a world where fungus, mold and germs were just something to clean up and not to be feared.

During M-E's treatment I hope we are waiting for Christmas and not Godot. We spend so many hours at the hospital and for blood counts and for clotting studies and for IV's to drip. So much of what we here is, "Well we can not know for sure what the results with be" "Everyone is different" "We need more time" "We don't know how long things will be like this" "We have not determined what makes the ANC go up" So, we continue to go and continue to wait because Godot will appear in our play.

She made it to school for a half day but stayed the whole day. I am going to try and get her up soon. She needs 12 hours at least. If Kerry wins do you think we can add a few hours in the day?




Sunday, October 24, 2004

The Birds and Side Affects

I have filled the bird feeders. The birds are having a good time. We have had visits from Chickadees, House finches, Goldfinches ( they are brown this time of year) Oregon Junko's, Robins, Red Breasted Flickers, a Pine Gross Beak, Stellers Jay, English and Brown Sparrows, Starlings, a Varied Thrush on it's way south and the squirrels.

My mom has always fed the birds. I remember a time in Michigan when we had so many birds that we a attracted a Shrike. A Shrike is predatory bird that likes small song birds. They catch them and impale them on a thorn or a shortened branch and eat them alive. We knew when he was around because all the birds would become very very quiet. He was an unfortunate SIDE AFFECT of feeding the birds.

Michigan is full of beautiful winter birds. Gold finches, Red Cardnals, Bright Blue Jays. Pinkish Gross Beaks and the brilliant yellow Pine Gross Beak. They have beaks like a parrots and can empty a sunflower seed feeder in less than an hour. They can just sit and eat. The Black Capped Chickadee takes a seed and goes somewhere and pounds the seed open and then comes back for another. Mom always wanted every one to have what they needed but she did grumble a bit about the Gross Beaks. Now with my mother it was never an issue of wanting to hoard the seeds or not allow them to eat until they were full, it was a matter of having to fill up the feeder in the dead of winter with lots of snow on the ground. Once a day is okay, twice or three times is a problem. She often can not find her shoes and was forced to go out barefoot.

The winter morning would be full of colors and quick flights and activity. Then the Shrike would come. It would dive in and try to get it's breakfast. We would all be horrified as we saw a small ball of fluff trying to get away. Everything would go silent and we would wait. The birds knew something was on the hunt. We hated the Shrike but then we had provided a place for the Shrike to hunt. We had concentrated the small bird population by being a feeding station. The Shrike was a nasty SIDE AFFECT.

We did a little research and realized that we had to find a small projectile and start to harass the Shrike each time he came to feed. We put a bucket of fallen apples on the deck and began the harassment. It took a couple of weeks but it finally worked.

Well we are in the middle of winter of Mary-Elizabeth's treatment. We have administered lots drugs to M-E. Each has the ability to attract a Shrike. I have been doing much more research on the long term results of things like Spinal/Cranial Radiation and Methotrexate. I read about things like bone loss, secondary cancers, memory loss, inability to do high functioning math concepts, loss of ability to concentrate, problems with peers do to loss of social skills, the list goes on and on. Each drug that we have introduced has long and nasty potential for a flock of Shrikes.

But then what do you do? I don't see any options other than to continue to sign the consents and pray. Maybe we will be able to find a way to toss a few apples at all the Shrikes. We do have apples and we would never decide to not feed the birds. How could we not keep the feeders full. The joy, beauty and amusement they bring to our lives is priceless.


Friday, October 22, 2004

She is Up Three Quarts

I took her in and they gave her two liters of fluid. Amazingly she was able to eat a PB&J. It evidently goes likes this: If you are dehydrated, you get nauseated and then you cannot eat or drink and you get more nauseated and then you cannot eat or drink and then when you do finally try, you throw up and then you cannot eat or drink.

I didn't wait for a serious crash. I took her in for a "bolus of saline". The plan was to be there by 10:00, out by noon and then to school. Oh, yes there is that time vortext hospital thing that confounds me every time. I am evidently a very slow learner.

We arrived. Vitals. She is almost down 30 pounds. Her heart rate was 123. They drew her blood and she got hooked up to the fueling station. Drip, Drip, Drip...............750 drips a minutes for 9 million minutes. Within 30 minutes, she was starting to look more herself. Hydration is such an under rated concept. I figured we were almost out of there and then the test results came back.

ANC 160 down from 588. Conclusion:the chemo is working. Result: No school. She had been there for only a few hours on Wednesday and was more than ready to go back. Friday is a dance and she was sent the perfect Faux Rabbit Vest and has new portable hair and ........Can you just hear the heart breaking?????????????????????????

My stoic little girl just said, "But Mom that is just not fair!!!!! " No arguments, no complaints just a short poinent sad statement.

They then set me up to "administer infusion therapy" at home. We came home with half of the Pacific Ocean (Saline) for the refridgerator and a friend for my now much beloved BlueBerry (I have chosen to call mine a BlueBerry. It is Blue and everyone needs to know that it is stupid to call it a BlackBerry by the way.) The new friend is $4000.00 handheld IV pump. It is very cute. Lots of buttons and the ability to beep at a whim for many strange and yet to be understood reasons. It came with tubes and white syringes and lots and lots of instructions.

You can not believe how happy it made Mary-Elizabeth to go to bed with a small beeping thing and a liter of saline. I tried to disconnect her a few minutes before it was done at six this morning and she would not let me. Every bit of fluid went into her PIIC line. I seem to learn a new thing or two each day.

Well I have to do some constructive work and pick up the house. The house fairies are not being cooperative. Stuff seems to remain in the same spot where I left it. Imagine that being the case.

Oh, here is something to ponder. We have two Katsura trees in the front of the house. One turned and lost its leaves about three weeks ago. The other waited almost two weeks to turn and has finally decided to drop its leaves. The thing that is curious is that the Slow Dropper is also budding out as if it is Spring. I guess over achieving is every where.

Thursday, October 21, 2004

I Think She is Becoming An IV Addict

She won't drink or eat. This is a new twist in this ever changing tale. I think she wants to go to the hospital and have some IV fluids. That may sound like a weird thing to want but then what has been normal during the past two months. She loves how she feels when her body is fully hydrated and they love to hydrate at the hospital. They love to measure what goes in and what goes out.

Everything tastes bad to her. We have tried almost every kind of bottled water, tap water with ice, and without. I put some fresh squeezed lemon in cold water, no go. Tea, fruit, peppermint, regular. Juices, apple, orange, mixed. Milk, regular and chocolate. For the first time in her life she has been told she can unlimited non-caffeinated pop and she does not even want that. She has been drinking a bit of orange juice but then not enough to keep a gnat hydrated. She has that stubborn steak that she gets from her father and she wants 1500 units of D5 saline and she is bound and determined to get it.

She feels so much better when the fluids are moving. No need to taste, no need to worry about spilling, no worry about drinking at the right time or any given amount. The IV is akin to breathing. They change the bags when they are empty. It is just a cake walk. I wonder if there is a support group for those addicted to IV FLUIDS. I guess I am going to have to address the issue today.

Wednesday, October 20, 2004

She has Become Sleeping Beauty

It is so odd. She is sleeping almost 20 hours a day. My bright, active and very interactive child has gone somewhere. No matter what I do I can not find her. She has withdrawn into her cave, bright pink of course, and I don't know when she might re-emerge. I don't know if I am not being hard enough on her or if I am being unrealistic about what she should be able to do.

See! we always return to the guessing game: Everyone is different, No one really knows, You just have to wait and see, Nothing is certain, Time will Tell. I hate all of those phrases. What do they call those? Platitudes.

Well I have work to do at home and the set up is almost 100%. I may try and hook up a printer today but then, Every one is different.

Tuesday, October 19, 2004

Her Bone Marrow is Bouncing Back

After reaching all time lows on Friday of last week, her bone marrow is back working. It sort of goes like this:

1. M-E's over achieving bone marrow produced too many white blood cells in an attempt to keep up and surpass all the other bone marrow in the class. (This is akin to padding of high school applications. Lots of that is about to begin in ernest among the 7th grade class.)

2. To curtail over achieving, strong toxic chemicals are dumped into the body to teach the bone marrow more reality based cell production. The treatment does its job because the dumpers have lots of experience. They understand what is going on and can bring a halt to the marrows bad behavior. ( People that review high school applications know that a potential 9th grader does not: play 9 instruments at concert performance level, speak and write 22 languages including Matueati, volunteer at 12 soup kitchens and knit bandages for the war in Iraq.)

3. Once the dumping is finished, the bone marrow is given a rest to see if it has learned to behave. Like all overachievers, the bone marrow believes that no one is watching and begins to work again. It starts slowly at first but then gets reved up. If left alone, it will return to it's bad over achieving behavior. (When the 7th graders begin to have nightmares and ulcers, they enter much needed stress therapy but only after dropping one of three "traveling team sports" to clean a few moments a weeks for therapy and the required 2.3 hours of sleep recommended by the Educational Consultant. )

4. Once good production begins and heads back to normal, the process is repeated several more times. More Chemicals, more non-production of cells to be followed by normal production. ( Speech, tennis and how to sleep while walking between class lessons are added for more rounded presentation.)

Bottom line: Hopefully somewhere along the way we get it right. The Bone marrow decides to just be normal. Because we all know normal might be good after all.

Sunday, October 17, 2004

It is Fall and the Hair is Falling

I never realized how attached I was to her hair. She has never been bald before. She came screaming into this world with a full head and it is has been only growing and more beautiful every year. Johnny took over hair duty several years ago. Jerry Tapia, our long time hair dresser, knows better than to cut it any way that can be detected less he incur the wrath of Yaya.

When the all diagnose was given, we didn't ask about the hair for a few days. Everyone assured us it was doomed. The Chemo kills " rapidly dividing cells" hair, white blood cells, red blood cells, cells that line your intestinal tract and sperm cells if your male.

We have been indecisive on how to react. About two days after she was in the hospital, she had a roommate that has only a dozen or so strands of hair left. We all looked at Tamra and even M-E thought it was time to shave her head. We talked with Karyn, our beloved nurse practitioner, and she told us to wait. That was great advice. We did shorten the hair to her chin. It was cute and more manageable for a while.

It did start to go, first a few strand on the pillow, then a brush full and then the dust bunnies became much more like dust elephants. Hair was getting everywhere. She did manage to keep enough during radiation to protect her skin. A few days after the end of radiation, Jerry came and gave her a Mia Farrow cut. It was time. I snagged a piece. I have a piece from when she was a baby. It is dark and very brittle. It has been through a lot but then so has Mary-Elizabeth.

We went with Alison to the wig store and we bought a cute wig. She did not want her head shaved and is a bit reluctant about her hair. She is in such a deep quiet place right now that it is hard to tell what she is thinking but I am sure she is worried everyone will stare or make fun of her. That is a middle schooler in her. I think ridicule is their greatest fear and no amount of reassurance will relieve that apprehension.

She has always been a child that likes things to be the same. There is nothing that is the same. We are making progress but a weariness has set in on everyone. This should be the worst of it. On the 25th of October she has to be evaluated to see if she can start the next round of Chemo. I am much less anxious about starting this time. She has responded so well to the last round. There has been lots of destruction of cells, she may need some time to let her body repair itself.

I just have to say that the hair going has made me sad, so very very sad. Each small pile I find jolts me a bit. It is hard to deny what is happening when you see it go. This is real, this is not a bad dream. This is our reality. I guess we are a bit like the barometer in the hall, it has dropped lower than I have ever seen it but one thing we know is it does go backup after the storm passes. The storm and the rain and the tears will pass soon.

Saturday, October 16, 2004

I am Thankful to Be a Family Law Attorney in Seattle.

I have been a family lawyer for almost 18 years. I always figured that I was serving my term in purgatory while on earth. When I left law school and headed to the big city, I proclaimed in a loud and haughty voice: "I don’t know what I am going to do but it won’t be family law." God has a strange sense of humor.
Over the years, I have struggled with my profession as a lawyer. I have whined and complained. I have bemoaned the fact I can not seem to find another profession or as Oprah preaches " To find my true calling". I have even stopped practicing for a year only to find my way back into the "life".
Until recently, I really was disgruntled on many days I was in the office. I like to work so it was hard for me not love every moment I was working. It took me a while to identify was so distasteful about being a family lawyer. I finally figured out that I did not like using my skills and expertise to be mean to other people. I also hate to disappoint those around me. My clients always had the aura of despair around them and I always felt I never really did get then enough. Clients seem to imbue their attorneys with the ability to change the past and make things right. No matter how hard I have tried, I can not ever really make the pain of a lost marriage and broken family go away. I simply don’t have super human powers.
God has a sense of humor and events of the recent weeks have made me finally love and be thankful for my profession. On August 14, 2004 I had a life changing moment. (Oprah would have been proud.) I received the news that my lovely, sweet, intelligent, loving daughter had High Risk Acute Lymposytic Leukemia with Central Nervous System involvement. She is facing a 2.5 year treatment protocol. The first year is very intense. I have spent literally weeks at the hospital for her many chemo and radiation treatments. (I am glad to report she is in remission and her chances for full recovery are very high.)
This unwelcomed news gave me an entire new perspective on my profession. I soon discovered that lawyers, judges and clients are the best! The first day I was able to back in the office I realized how good it was to be able to do what I do. I can actually effectuate change in people’s lives. If feels good to work with other people’s problems.
I am so thankful to have clients that asked me how M-E is doing before they explained their current dilemma. What a relief to have Judges that granted changes of case assignment areas and continuances with understanding. I can not begin to thank and be thankful enough for my opposing counsel in my cases and my former opponents for their curtsey, understanding, flexibility and cooperation. Their offers of help often brings me to tears.
I am so thankful to have a profession that lets me work from home. I am thankful to be part of a firm that fully supports my need to bill less and be with my daughter more. I am thankful to have such great colleagues and professionals to work with every day.
I am very thankful to be a Family Lawyer in Seattle.

Sally A. Lanham, Mikkelborg, Broz, Wells and Fryer

Thursday, October 14, 2004

We have known for two months.

I was very testy yesterday. Mary-Elizabeth has shown signs of regression over the past few weeks. She needs much more of what she used to call "Mommy Time". She needs more of my attention than I realize. It is more of an attention thing. She is very inwardly focused and very quiet much of the time. She is concentrating on healing and managing the daily assault of treatments. She needs me to be with her and just hold her. I realize that this quiet time is a gift. Most 12 year olds are pulling away from all parental contact.

I am acting like a petulant 3 year old if everything does not go my way. Flu shot refusals sent me into hysterics. I love the Swedish Medical Clinic in our office. "We don't care if you need the shot. You are not our patient. You should get it from your doctor." I now understand the panic felt by an addict. "But I need it!!!!!!!!!!!!!!!!" I made a typo in a letter I was trying to get out after hours last night and I was in tears about being a bad typist. At that point I was more of tired 3 year old. Maybe this will keep me young. Do you think it is bad that I want CoCo Puffs for breakfast.

Two months. It so feels like a lifetime. The memories of normal are fading rapidly. Yesterday we had the "X-Ray to look for the possible blood clot in the lung" fun. (She is okay). I see normal and know it is out there. I see people on the way to work, upset that they have to go. I want to shake them and tell them to enjoy each and every moment they can go to work without having to manage a health crisis at the same time. I see a mother storm out of a restaurant angry that her beautiful 10 year old daughter does not use chop sticks correctly. I see father's that don't spend every possible minute with their children that they can not knowing what it is like when a simple cold can keep them away.

We are at a very dicy time right now. After the last round of treatment her system is still crashing. ANC : Monday 288, Wednesday 150, normal 4000. Her White Blood Cells are less than 500: Normal 10,000. Her bone marrow will start to recover soon. The doctors are happy but also worried. Low counts mean the treatment is working. Low counts mean she is in the danger zone for nasty infections. No wonder I am going crazy. Nothing is what it should be.

Well I am going to work and trying to do some good in the world. I will get through the piles and will make sense of some things. I will not loose it today. I will find something to smile about. I will continue to try and remember this is only a phase and it too will pass. We are at day 25 of 63 of Consolidation.

Pray for me and everyone I deal with today. Two months, 28 more to go.

Monday, October 11, 2004

They Came at Her Like a Swarm of Bees

We went the Children's for what I thought was a simple shot and some IV Chemo. I had become complacent. Everything has been going so well. We have not had any surprises. I figured we had this phase handled. After 14 doses of oral chemo, 12 doses of radiation and 9 doses of IV chemo, how bad could it be. She is feeling much much better. She even has color now that she had her three pints.

Well, just when you think you have it figured out you go to Clinic. Today was not a great day for anyone. Things were not going well at the front desk. The computer was not happy. First thing we learned was that 15 families have been moved out of the Ronald McDonald House. All the rooms were marked with orange isolation signs. There is an outbreak of Chicken Pox. Chicken pox is very very bad for people with compromised immune systems. I think they feel like it is the 11th century and the cats have been killed and the rats with the fleas are out of control.

We saw Karyn our Nurse Practioner ( never let anyone but one of these people do your spinal tap chemos). She gave us bad numbers but after examining M-E said school for a couple of days would be okay since she looked great.

I really needed M-E's shot needed to be done by Noon. They forgot to tell us that it was really three shots. Mom can do lots and lots of stuff but M-E needs her mom for shots.

Shots are dreaded more than many many things. These kids have so many procedures and so much that makes them miseralbe The last straw seems to be shots. The kids are getting flu shots and the screams are amazing. They had to hold down a 9 year old. The look on those nurses faces when they headed behind that curtain was very frightening. Then the screaming was began.

We knew Mary-Elizabeth had to have a shot today. We did not know that she had to have three big shots at the same time. Three big needles attached to huge syringes. It looked more like they were basting her than treating her. The nurses all came into the room armed. I looked away and they counted. One, two three....... And then she squoozed my hand very very hard and said Ouch. That was it. No screams and I did not faint.

All in all it was a good day except for the attach of the killer bees. M-E felt she deserved something for having three shots in one day. I suggested a pearl. I suggested we start to buy single pearls for each shot and by then end of this she would have a a strand. Oh, no, she does not want round pearls they are just too boring. She would like one of those really cool baroque pills.

I guess she will never be boring. She is truly a unique spirited.

Sunday, October 10, 2004

WE HAVE SETTLED INTO THE SIEGE

Remember those old tales of sieges. A castle was attached for weeks and months and years. I often wondered if time was reported in the bible like 40 days and 40 nights. God could not just say that it took a very very long time.

I realized yesterday that we are in the middle of a long seige. We have hunkered down for the winter and will enjoy moments. We are having some good moments. Whitney is here for the weekend. She was able to go to a party last night. A few of her friends got together for some movies for a birthday party. She was tired but happy. We have to have a few moments of fun.

M-E seemed to have weathered this first part of the Consolidation. She has done great. She has been nauseated most of the time and has lost about 5 pounds but will be hungry this morning. She did not have any of the liver problems associated with the Mercrapterprim. She never had a fever with Ara-C. She had a couple of head aches and was very tired but she did not suffer from any the obvious affects of the the radiation. My sister told me not to hit M-E on the head because I might be upset when I hear the sloshing in her skull. She has had some short term memory issues. I now have Dorey. (The Ellen Degeneris character in Finding Nemo)

Of course she and Mom are using "We cannot Remember" for lots of things. It goes like this: Did you brush your teeth? Oh, how can we remember to do that! They are very very bad.

She has only one scheduled appointment this week for the Clinic and we are going to see how much school she can handle.

We are in a waiting mode. Waiting for the troops outside to go home but we know that they are just waiting. Waiting for the opportunity to strike. We are prepared for the next strike.

Friday, October 08, 2004

The Last Day of Radiation

Well, we are at the end of the first two weeks of Consolidation. At no time will regularly scheduled treatment be so grueling. 12 radiation treatments, 9 doses of Chemo IV, one dose of IT treatment ( Spinal Chemo) 14 doses of oral chemo. Now we wait and see. What we have seen so far has been remarkable. She seems to be tolerating the treatment. She has had some complaints, Mump like symptoms, head aches, nausea and the hair is going, and going and well more on that later. She has needed 3 pints but it perked her right up. Unless her number crash she will be back in school on Tuesday.

She never complains except about brushing her teeth. We have been arm wrestling about that. She let me know today that the toothpaste tastes icky. Smells are becoming more of a problem. This too will pass.

My new assitant Dawn made a great suggestion. Give blood. M-E really really benefited from it. Also everyone needs to get on to the Bone marrow registery.


Wednesday, October 06, 2004

Mrs. Jones Loved the Jelly

I love my mom. She is the greatest. She is thoughtful to the Nth degree. She is a bit weird and we worry about her. She does stuff like cut my trees to watch the girls across the street when they move in. She can tell you a lot about their behaviour. She makes sure I go to bed when she is tired and if you call and ask what you can do she will tell you to call back in six months. She is just like that. She doesn't make M-E do her Lovenox shots all the time but will force feed you vitamin C on a whim. She let's Mary-Elizabeth be on computer way to much, complaines about how bad it is for her and then tells me I can not complain about how bad the computer is for kids.


She has taken M-E to her appointments most of these last couple of weeks. Radiation evidently is given to many people over a period of time. They keep running into the same people all the time. Mrs. Jones is an older black women that comes every day for some type of radiation. We won't ever know for what or the outcome but radiation can never be good. She has had some problems with burns and been uncomfortable but has always had a good attitude, a smile for everyone and some words of encouragement. Mom took her some jelly today. Sour things taste good and Mom made her day. I love our Mom.

Tuesday, October 05, 2004

She is off to the Re-Fueling Station

Well, the Doctor's were tickled. Things like low blood counts make them giddy. It let's them know that the treatment is working. M-E and my mom are off the Hem/Onc clinic for her first blood transfusion. Everyone says she will feel like taking on the world after she gets someone else's healthy red blood cells.

She is such a trooper. She does not complain. Her biggest complaint is that I keep trying to get some food into her.

As a species we must have such a deeply rooted survival instinct. Never does she complain about treatment or any of the side affects. She just does this day after day and has a positive attitude. We see lots of kids every time we go. The only ones that seem to be a problem are the 5-6 year old boys. They can pitch a fit that makes Mt. St. Helen look calm. The boys seem to have been abandoned by their mothers and lots of father's bring them to clinic.

Mom is trying to put up inside Christmas lights. M-E is resisting at this point. I know my mother. The Marys in this family set their jaws and do what they want to do and don't let much get in their way. I will let you know when the lights go up.

Now I know where M-E gets her strength. She comes from a long line of surviving Marys.

Sunday, October 03, 2004

The Magma may be Coming

They are waiting to see what will appear today at Mt. Saint Helens. I am curious and very interested in all of that. Of course I am one of those that wonders why they don't know more. Why they have not figured out a better way to determine if the lava is going to flow? Why are there so many questions left unanswered?

The fact is there is very little we really know. We know there are hurricane's. We don't know where they are going to go or how much damage they are going to do. We know there are erupting volcanoes but we don't really know when or how much they are going to erupt. We know M-E has luchmia but we don't know if it is really gone or when or if it will come back. I hate uncertainty but then that might be the only certainty we have.

I am bothered by all the reminders that relapse can happen with the disease. We are in this early part of the treatment and are just trying to get through the early phases. One day, one appointment, one shot at a time. I very seldom let myself look more than a couple of weeks ahead.

The first week out of the hospital, I ran into someone I knew. Her daughter is 8. She relapsed just after going into the maintence phase of treatment. ( We don't reach that for another 10 month.) Our most recent 5 year old roommate relapsed just after finishing her two years treatment. I wonder if these people are in my path to let me get ready for the fact this part of our lives will never end or if it is to remind me that we are very lucky and I should just count my blessings. My attitude and choice of messages is very much dependent on my stress level. It is Sunday and I am at work and I am beyond stressed about work and getting everything done. I know that getting everything done is not possible. I think I need to give myself a break but then I am not very good at being easy on myself.

The getting everything done comes from my father. He is the voice that let's me know I need to work harder and bill more hours. He is the one that believes long hard hours of nose to the grindstone is the answer. If we follow the protocol things will work out. Mother gave me the gift of the "worry zone" . Things are either in the zone or not. If they are not in the zone you don't worry. If they are in the zone, you take positive steps and fix it. Never do you dwell and worry needlessly. She told me this morning that I should not worry about the dream where the lava was all over and I had to break my windows and crawl out of the bedroom to get away from it.

Translation: I should not worry about Mt. Saint Helens or a relapse. I should get to work and bill more hours.

Saturday, October 02, 2004

We are done with week one.

WE are done with week one of Consolidation. 7 doses of radiation. 4 doses of ARA-C. One dose of Cytoxon, 7 doses of Mercraptaprin (my spelling) and a lot of other stuff. She is up and doing homework. She is remarkably resilient. She has a good attitude and a great spirit.

She is getting more and more tired. Her color is fading and the hair is going. Each and every treatment is like a knife into my heart. The pain I feel is so real. Every time she gives herself a shot, I simply turn away becasuse I can not stand to watch it.

As Mom's we are simply hard wired to protect our children. In the very beginning God knew we, the mother's, had the ability to keep the children safe and make sure the species survived. I know that each and every treatment is necessary. I know that we have to go through the whole process. I know that we are going to beat this thing but the process is so arduous...... I just try to have a good attitude and thank God that we don't live in another time. I remember the part of the "Year of Wonder" where the step-mother tried to comfort the mother whose two young children had died of plague. The stepmother says " I told you not to get attached to them until they are three years old." We are very lucky that my biggest complaint is that the treatment is difficult. We do have treatment, lots of great friends and Sunshine!

Mom is here for a couple of weeks. It is such a great help. Dad took the train from hell to Eugene. He did not get home until 9:00 pm. He reports that you meet interesting people on the train.