Wednesday, September 29, 2004

Radiation is Not M-E's Friends

You know all my worries about giving M-E things like Oxecodone for pain and Reglan for nausia? I now have the recipe for Vicodine. That would be 10 miligrams of Oxecodone and 1 gram of Tylenol. She is also taking 3 Zofran a day. Oh, well it was like when I had Mary-Elizabeth, I said no IV's . That lasted about 9 minutes. My tolorence for her pain is non-existant in the real world.

The problem is we don't know what is causing what. Does she have a headache because she had to be poked twice in her spine or was if from the spinal radiation? Does she have a head ache because she has not eaten anything for more than 24 hours? Are the chemo and the radiation causing the upset stomach or is it because she is taking medicine on an almost empty stomach? Is her back hurting from the back poke or the radiation or because she has been in bed since Sunday? When do I panic and ask we go back to the hospital for IV morphine for me?

Okay, I will have another cup of coffee and continue to watch the Mt. St. Helen's Web Cam. Foggy and gray last time I looked.
Day two of three of Spinal Radiation
Day two of nine of Crainal Radiation

Tuesday, September 28, 2004

Well, Radiation is a Trip and Very Scary for Me not M-E.

We did leave the hospital on Sunday. Back to clinic on Monday for a chemo treatment, back today for a Spinal Chemo, IV chemo and then on to University Hospital for her first radiation treatment. Oh, I was not ready. I had been there before but I did not go in with her for the simulation. I insisted on going in this time.

We took her into a huge room filled with weird equipment. I saw them position her on the table, her face in a mask. Then they made me leave. They did some things and then they left and a huge 12 inch thick door slowly closed. If you were wondering, it take 48 seconds for the door to close and to open. They they played with some computers. Then a light came on over the door. It was on only 30 seconds. They repeated this process 2 more times with one treatment lasting a whole minute.

It brought me to tears. That deep sinking feeling of how serious and very scary this entire process is becoming. They are in there sending powerful rays into my sweet sweet daughter's skull and spine. She faces secondary brain tumors, cataracs and a host of other problems. Her pituitary gland might turn off, her vision might change her spinal cord could be damaged but we are doing this to her by choice because her other options of not doing the radiation are gruesome.

I was feeling better because we were moving ahead again. I was not going to have to be weirded out by the fear of not going after the rest of those bad cells. We have 8 more months of this intense stuff. I know we will survive but there will be more than the tatoos and Piic line scares left by this process.

Side affects: Ara-C makes her sleep like crazy. Exhaust fumes smell like burned English muffins and she wants her dad's salsa. So we shall see how the week goes.


Sunday, September 26, 2004

We Might be out of Here.

I have a cart ready and part of the packing done. We might be able to go home today. She made it through three does of her chemo in 12 hours. She survived a big dose of Lasix. Yes, she now understands the term: "Pees like a Race Horse" She was pretty busy for a couple of hours last night before bedtime. She is exhausted today and worried about school tomorrow but we will be home for a couple of days. She seems to bounce back but this is a lot to respond to in a very very short period of time.

I had a weird experience last night. Around 10:00 I was going to brush my teeth and walked by a room where there were lots of people and monitors and beepers going off. When I say lots, I mean there must have been 12 people in the room. Around 4 :00 am I was up using the same bathroom and the whole floor was empty. I did not see a single nurse. I went past the room and it was dark and the child's name tag was gone. I was very freaked by the silence and the emptiness of the floor. I did not go back to sleep for over an hour.

I finally summoned the courage to ask if they ever transferred kids from this floor somewhere else. I was told that the little boy had been transferred to ICU and was doing better.

Just add to my list: I don't want to have my child to be the attention of more than one nurse, an attending, a fellow, a resident or three, a medical student and nursing student at one time.


Saturday, September 25, 2004

The coyote might be Headed West

On Wednesday of this week, my sister's secretary was late to work. Being late was unusual for her. She went to work but then around 10:30 in the morning she went to Belle and said :

I have to go see the Medicine Man.

Why?

A coyote ran across my path.

Oh? That's a problem?

Of course it is.


Belle let her go and she returned around noon.

So, how did it go?

It is going to be fine. The coyote was running West. No need for a Sing.
( A long involved healing ceremony.)

Translation, the world was not out of balance.

The Navajo is a culture based on balance. Nature and man must be in balance with each other. Most often man pulls himself out of balance with nature but sometimes events do. A Navaho would seek the help of the Medicine Man to restore the balance.

We have been out of balance. I now know I need to be looking for the wayward coyote in our neiborhood.

On Monday we came to clinic for an evaluation and to be admitted. We were packed and ready. M-E had great platelets and red blood cells. She had been very low on platelets last week. They thought that she would need a transfusion. Evidently her marrow heard that it had been dilatory and began over producing platelet's like crazy. It seems the marrow can produce two things at a time but cannot do three. Her ANC was way down. We were sent home.

I just knew I had failed some how. Did I not give her the right food? Did I not make sure she was in bed on time? Was it a mistake to let her spend the night with her best friend? Am I pushing too hard for school? Should we be doing some exercise? Except for needing more exercise, I did not doubt any of my decisions. What to do? Well, we needed to keep the Red Blood Cells going so we did the obvious and went to Outback for big meat.

24 hours later we were back at clinic. A quarter size bump that hurt like crazy had appeared. We went for a check. They gave her a for a huge dose of antibiotics and some horse pills and sent us home.

24 hours later we returned. Being from a family of high achievers, she had produced something that looked angry and kind of scary. Bad news: the red spot had doubled in size and we were admitted. The good news: M-E's ANC was high enough to start consolidation.

But then you can not begin Consolidation with an active undiagnosed, unresolved infection. So here we sit. Twice a day a dose of antibiotic is administered. The doctors come by and say, " Well........." And we wait. Watching an infected area grow and shrink is not a thrilling event but a necessary evil.

How do we get to the balance? I am beginning to wonder if this is a "bump" in the road to just make me really really want Consolidation to begin. I dreaded it so much and yet now want it to begin. I would hate to loose these moments of remission. I have been assured that we have some time. She would probably stay in remission for up to six months or maybe only six weeks. We are not willing to find out. I know that a relapse would be a very bad thing.

We don't have a Medicine Man readily available but something worked after 4 days in the hospital. It could have been a number of things. Maybe it is the world of prayers being said on M-E's behalf. Maybe I needed to leave the hospital for 16 hours and let nature take it's course. Maybe she needed some good energy from her dad who spent the night. She always sleeps better when he is here.

While I was gone, the news of the start of consolidation was released. We start in a couple of hours. Zofran and then the Cytoxin will go in over an hour and then an Ara-C IV push will be given. Then we wait. The IV drips. We wait. The hours tick and we wait. What will she do? What weird and unusual side affect will occur? We wait.

She is ready. I am more than ready. Mom is on her way and M-E has her Consolidation earrings. Blue topaz in the shape of Rain Drops. The jeweler told me they were tear drops but I don't want them to be tear drops. Rain Drops bring good things. We are counting on good things ahead.

Thanks for your prayers and watch out for non-West going coyotes.







Friday, September 24, 2004

I am working to get us out of here.

We are just doing a lot of waiting. Lots of times trying to make sense of all of it. These people are very ridged about a lot of things. M-E's first does of antibiotic was at 4:00 p.m. in the afternoon. That event sent the schedule and guess what, they follow it. 12 hours later......

Oh, but I have figured out why they are like they are. Here is an example: They really want to keep M-E on Lovenox. Lovenox is given by injection two times a day. It is to keep her from having any more clots. I of course have decided she did not have a clot and that it was a mistake. I have reached that conclusion because when we went for the ultra sound 3 weeks after it was discovered, it was gone. Everyone told me it would be months before it would go away. It is gone. So, I reach a different conclusion than the 947 doctors, nurses, residents, MRI etc. It must have never been there so why treat it.

So here is my theory. We have to have some hard and fast rules in Medicine because there are no rules on how the body reacts. Every single case is different. There are only a few hard and fast rules and so any that they can enforce they do. Remember that case where they had a women life support, Mary Jo Kepectny? And then after years and years they took her off and she continued to live. Experts said she would die, and she did not for several more years. The fact is there is no certainty in this world and no matter how much research, how much technology and how much money we try to find that certainty, sometimes we "Just don't Know" Well back to the room, M-E has a shot scheduled.

I do have to remember though, I live my world in the know certainty that there are not answers, only arguments.

The First Night back in the Hospital

One of M-E's roommates was a 13 year old surgery patient. She swore like a pirate, had her tongue pierced and was brought back to the room by security because of taking one her friends out on an adventure in wheel chairs.

I asked her how she was doing and she tried to be very rude. Poor child, that was a mistake. My teacher voice came out of nowhere. M-E seemed a bit miffed by some of the behavior but not surprised. She tried to explain to me some kids just acted that way.

I know we complain that the girls are growing up too fast. The I take stock of what a great place St. Joseph's is for Mary-Elizabeth. I look around and know we have provided a great place for our kids. Of course the real question is "Do we do it for them or for ourselves? I hope we do it for both.


Wednesday, September 22, 2004

We are so happy at the Hem/Onc Hilton

Well it was a productive day, M-E's teeth were cleaned and we had a simulation of the Radiation. We then stopped by the Hem/Onc clinic to have the bump on her leg checked. I should have known better than to do that. I should have known that it was not good to let them look, and ponder and worry. So here we are room 3267, sharing the space with two other children. I am certain they would not be pleased to know that we are here for an unknown infection but then I am not going to say anything yet.

I did get some work done this A.M. I am going to see how far I get this evening. A little bit at at time. Lots of deep breaths and some trusting activity needs to be done practiced by me. Her ANC is high enough to start Consolidation but now with the infection we could be pushed off another week. We all seem to be in this holding pattern. I am just going to try and do my best. I have decided to try and not worry about any schedual. I will let everyone know when it starts and not until.

I can report that the University Hospital has the best food on this side of the Montlake Cut. If you ever have an urge for good lentil soup, try there. Very good.
Well they are medicating M-E with lots of antibiotics and we shall see if the new spot grows.


Tuesday, September 21, 2004

Best Laid Plans

I am just not going to tell anyone what I am doing or where I am going to be. It will remove one more layer of guilt because no matter how hard I try, I can not get a fence around this new thing in our lives. I think we will name it Lucinda.

We were ready. I had work organized, I had talked to everyone, I had the milk stopped, I had the garbage handled and we were ready for this very very difficult stage of treatment. We went into the clinic for the blood draw and then we waited for the room number. I read, M-E did homework and we waited some more. (We do lots of waiting.)

The counts came back: platelets doubled, White Blood cells up, Red Blood Cells up and we were ready to go. Then, the ANC was finally reported. 528. Then I argued: but the rest are up. Maybe the ANC is wrong. Maybe you don't need to have 750 to start. WE ARE READY.
Answer to all my pleading and begging: NO, NO, and that would be NO.

We took our matching bags and went home. No Cytoxon, no Ara-C, no Methotrexate, no radiation, no opportunity to use really really expensive anti-nausea drugs. We were sent home and told not to come back until next Monday. Did I not feed her right, did I not make sure she had enough sleep?? Did we not have the right bags? Was it watching the Emmy's and the bad jokes that did it? It is all so much a guessing game.

Okay, try and make the best of it. Early to bed on Monday evening. We get up bright and early on Tuesday, we get out the door and I get almost to the school and realize that I failed to flush her PIIC line. I drop her and wonder why it takes 13 minutes to get to our house from the school and 36 minutes to get to the school from our house. ( I now have stashed heprin in my car and at the school.) I do the medical procedure with a class room of 7th graders watching. The little boy next to M-E looked faint and the one next him looked disappointed that there was no apparent blood and pain involved. I got back into the car and received a call from the Phone Guy. He was going to fix our phone. We have had no less than 4 guy and hours of agony on this issue. I returned home to meet him. There went that day.

I did a couple of errands, tried not to feel guilty about work and then picked up M-E.

The plan for Tuesday afternoon involved going home, dinner, some homework and bed. Now how hard could that be to execute. Well it can be pretty hard to do when Lucinda is around.

She had a bump, a small ugly and hurtful bump on her leg. It was bigger and more painful than this morning. The old Sally would have told her to suck it up. The new Sally, that is going to conquer Lucinda at all cost, called the Hem/Onc client and headed to the hospital.

What a surprise, they don't know what it is. But they have lots of options and lots of ways to find out what it is. They don't like it one bit. They want to go after it with great care.

We are now armed with a huge dose of IV antibiotics, a bunch of little vials of medium that grow lots of nasty bugs injected with M-E's blood and a bunch of huge pills.

We are ready for the new bump what ever it turns out to be. We are hitting it from many angles. It will be dosed and purged we will move forward in full war regalia. But then we might not ever know. And I think that just about says it all.

Sort of like Frederica, who is totally, 100% gone by the way. No trace left. She heard they were coming at her with three doses of spot radiation and she decided not to stick around. I hope she told Lucinda to do the same.


Sunday, September 19, 2004

I really have other stuff to do but then......

I have that "You must have something productive to do gene" I just need to sit here. I also need to figure out if I tossed my new spare pair of glasses away. I had them in a bag and we have had recycle day and.......... I think it is possible. Oh, well no one has even noticed I have new glasses. I knew I should have purchased the ones with the red rhinestones on them. M-Elizabeth did not want to be seen with me. How can she talk? She has 5 tattoos, three on her back and one on each side.

Oh, now I understand. When you get old like I am, 50, you start to do things like get sparkly rhinestone cat eye glasses because no one notices you have new ones. I guess that garish cloths and wild hats and rhinestone glasses are the fault of the world not the person that puts them on. Now that I have solved that dilemma I am going to go get another cup of coffee.

Saturday, September 18, 2004

Climbing Mount Everest

We are at base camp and must wait a couple of more days for news before we can head on our journey. Everyone is getting antsy but we are working to get ready. M-E was able to sleep over at the Verhoffs. I still woke up but it was nice to have some down time. I need to do that more. I figured that while she was so stable and feeling good I could escape for a little while.

I would like to share this burden but this is so complicated and I am the only person that really knows the whole story. We are doing medicine by committee and M-E is going to be in books someday. Because we have been involved in three separate medical communities it is hard. I think as we go on and get into some more predictable stages of treatment I can let some other's take her to her treatments. I will see if we can get to another "R" word, "Routine".

As we wait she is shedding. Bits and pieces of her DNA have been deposited all over, the house, the car, the school, the street. Picture Pigpen from Charlie Brown. She seems very matter of fact about it. It is falling out . She is not ready to cut it off but is thinning. It seems to gross me out more than bother her. I think I have that mother hair thing going. You know, the one where every time a mother opens her mouth she says " Get your hair out of your eyes!!!"

M-E is ready. Ruth insisted on hat purchases. I asked M-E if she really thought if her head would get cold and she said in all of her 12 year old wisdom "Mom, my head is use to having lots of hair ! Of course it is going to be cold." Silly silly me. She has several hats purchased and a couple belts. She is trying to complete some homework and I am doing laundry, working a bit and trying to clean the kitchen. M-E is doing better than I am on getting her tasks done. I am scattered. I may need some ADD meds soon.

I napped a bit today and tried to finish the auction quilt. See there is still a part of me that thinks I should still be able to do it all. I am trying not to feel guilty that our class does not have a room parent. I have to let that one go. I have to let someone else get the class project done. I am getting a knot in my stomach. I am anxious about the treatment, stuff at the office, money, about Mary-Elizabeth, about how the next day will go. I find that I worry more when I am tired.

Worry is just part of this process. It is part of the preparation for the next step. Will she be successful in this treatment, will she suffer some of the possible side effects, cataracts, secondary luekemia, brain tumors, learning disabilities etc..... Will she ever be able to get health insurance after having ALL, will I be able to work enough to have a job to keep our health insurance, will Hurricane Yogi hit Seattle. See, I am tired and need to go finish my tasks for the day and go to bed.

I know that things are fine at work, I know that we have the best doctors in the country, I know that the school will do everything possible to help get us through. I know that we will handle this time with faith and prayer and good pioneer determination. I also know that things will go well and M-E will make it to the next stage with the same great spirit that she has exhibited in the last 5 weeks..... "Mom, that didn't hurt as much as I thought." " See that did not make me sick" "Mom, I will feel better after a nap and some ice cream." "Mom, see my chubby cheeks are starting to shrink." "See, I still have some hair." " Mom, can you believe has nice everyone has been." " Mom, God will get us through this but we don't have to be happy about it right now." " Mom, I love cards and meals people bring. There a lots of good cooks out there."

We are on a journey, we are resting, we are starting up to the next camp on Monday about 2:30 p.m. Wish us luck.

Thursday, September 16, 2004

The Eye before the Storm

Now I know how they feel in Hurricane country. The wait. The anticipation of the winds (the chemo) and the rains ( radiation) and the tidal surge ( the side affects). You can never figure out how any of it is going to work.

We are in the calm before the storm. We have this little trip for a blood draw to see if her platelets have been following their friends white blood cells and run up the mountain. I guess they are very good friends and that is what they usually do. They all like to be together. She feels good. The hair is going and the cheeks are chubby but the appetite are great, the insulin need is gone, the energy is back and she is sleeping like a baby.

She was in P.E. for part of the class until they started with the game where they throw balls at each other. No contact sports. I wonder if that means dances and boys? She does not seem too interested at this point. ( I do digress a bit but it is 6:30 a.m. and I am only on my first cup of coffee.) She feels great. She was ready to do the jog-a-thon but I bet the teachers will figure out a way for her to do it this week.

We are just waiting. We think we know what is coming but we don't know really what the direction will be. We know that there are high winds ahead but they might not be so bad here. They might hit the kid across the street. We know that there will be rain but the drainage might be able to handle the onflow. We just don't know. So we wait and think about what we know.

We know when it starts, we have matching overnight bags for the hospital from Landsend. MEB@Hem/ONC Hilton and SAL@Hem/Onc Hilton ( this is not a link it is a bag) We are ready. We just have to see what happens after the storm. We have to go clean up after the wind and rain and the palm trees fall down. Hopefully we have installed enough plywood and purchased enough batteries to survive.

We shall see.


Wednesday, September 15, 2004

Everyone is RELIEVED

We all slept last night. I just went and crawled into bed after the Remission news arrived.

Lots of people think that we are now done. Well we would like to be done. Evidently you can get kids into remission with only Prenisone. You just can not keep them there. We will go through several periods of maintenance and something called Delayed Intesification. I have not really looked at that time because I have to get through the first phase. This is what I know.

The next 2 month phase of her treatment requires.

A. Two planned hospitalizations overnight
B. 16 IV doses of chemo in the clinic at the Hospital
C. 28 doses of oral chemo
D. 2 doses of Chemo for her Spine
E. 5 dose IV Vincristine ( Chemo)
F. 2 Pre asparagus Shots
G. 12 days of radiation 9 doses to the Brain, 3 to the Spine and 2 to the Spot.

So our next challenge is ahead of us.

My dad said that Mary-E will teach us a lot during this time. I know that she will.

I have learned that things are not as you expect or plan.

I have learned that when faced with more information than I can handle the only way to deal with it is to go to the Office Supply store. If you have enough notebooks the world is good. Tabs are very important and we are going to soon explore the concept of color coding. They may not make enough highlighters for my purposes.

I have learned that when faced with insurmountable problems, one step, one moment, one day, one more meeting with a doctor is enough. All the future information can just go into the "Information" Pile. You can never have enough bags in which to put your notebooks and office supplies.

I have learned that the world does not truly appreciate the concept of the three hole punch. Everything should come three-hole punched or there should be three hole punches everywhere like garbage cans or phones or bad pens.

I have found that it is possible to keep up on the laundry by doing a load a day.

I have found that there are many good cooks at St. Joseph's. They have been so great and supportive.

I have found that I am very greatful for a profession that let's me help people with solvable problems.

I have found I can handle a lot more than I thought I could. I think that if you can still have a sense of humor on day 30 of Lwequemia treatment you can survive anything. What could be harder than this? Do I want to know?

I know I am going for a hamburger just because. I have learned we need to do lots of "Just Because" things. You never know if you will have time for more of them

Tomorrow we are going to get my baby tatooed. Now there is something that was not on my list of "must haves".


Tuesday, September 14, 2004

She has 3% Blasts and the Flow Cytometer says everything is okay!!!!!!!!!!!

I have not received a copy of the final report but the word on the street is:

3% neoblasts in her bone marrow. ( normal)
No bad proteins found on the neoblasts and all that means

SHE IS IN REMISSION

So now I can breath a bit more. We have one more appointment on Thursday for the mask making and tattooing. A stop for a platelet evaluation and then we have days and days off. Oh, that would Friday, Saturday and Sunday. It feels likes days and days. Everyday that we are not at the hospital is a gift. Everyday that we are at school and work is an entire holiday.

Thanks for your prayers and your good thoughts. I am glad to know that God has a sense of humor and that retribution was not heaped upon our heads for going to the races on Sunday instead of church. I am sure she understood the need for some fresh air and some well placed bets.
I am also glad to report that the Navaho healers that did the Cedar Ceremony on her behalf were right: There was nothing to worry about.


Saturday, September 11, 2004

This is the Plan for the next 63 days.

CONSOLIDATION OF REMISSION: (This is the worst phase of therapy.) Considation means that Lue is gone but the world of M-E's Body is going to make sure it never comes back!!!!

DAY 35/0
September 20
IT-Methotrexate
Start cranial radiation (9 days cranial; 3 days include spinal plus three or four more of the bump)
Overnight in the hospital for cytoxan ( This is so nasty they only give in the hospital.) This will not be a pleasant night. & Ara-C Mercaptopurine ( Oral)
9-21 Ara-C IV Children's Hospital Mercaptopurine
9-22 Ara-C IV Children's Hospital
Begin Spinal/Cranial Radiation U of W Hospital Mercapurine

9-23 Ara-C IV Children's Hospital
Day 2 Spinal/Cranial Radiation U of W Hospital Mercapurine
9-24 Day 3 Spinal Cranial Radiaion U of W Hospital Mercapurine
9-25 Mercaptopurine
9-26 Mercaptopurine Hold Lovanox after A.M. injection

Day 7:
9-27 Mercaptopurine

IT Methotrexate Arc-C Children's Hospital Bactrim

Day 4 Spinal Cranial Radiation U of W Hospital

9-28 Mercaptopurine Bactrim Arc-C @ Children's Hospital
Day 5 Spinal Cranial Radiation U of W Hospital
9-29 Mercaptopurine Arc-C Children's Hospital
Day 6 Spinal Cranial Radiation U of W Hosptial
9-30 Mercaptopurine Arc-C Children's Hospital
Day 7 Spinal Cranial Radiation U of W Hospital
10-1 Mercaptopurine
Day 8 Spinal Cranial Radiation U of W housefly
10-2 Mercaptopurine
10-3 Mercaptopurin
Check counts frequently - may need transfusions
DAY 14
10-4 Bactrim
Day9 Spinal Cranial Radiation U of W Hospital BCR/PEG Asperigus Shot Children's Hospital
10-5- Day 10 Cranial Radiation Bactrim
10-6 Day 11 Cranial Radiation
10-7 Day 12 Cranial Radiation
10-8
10-9 Check counts frequently may need to be tranfused.
10-10

Day 21

10-11 Vincristin IV at Children's Hospital, Bactrim
10-1 2 Bactrim
10-13
10-14
10-15
10-16
10-17

DAY 28

10-18 Bactrim Cytoxan overnight in at Childrens Ara-C **
10-19 Mercaptopurine, Ara-C IV Children's Hospital Bactrim
10-20 Mercaptopurine Ara-C @ Children's Hospital
10-21 Mercaptopurine Ara-C@ Children's hospital
10-22 Mercaptopurine
10-23 Mercaptopurine
10-24 Mercaptopurine

DAY 35

10-25 Mercaptopurine Bactrim & Ara-C @ Children's Hospital
10-26 Bactrim Mercaptopurine & Ara-C@ Children's Hospital
10-27 Mercaptopurine & Ara-C@ Children's Hospital
10-28 Mercaptopurine & Ara-C@ Children's Hospital
10-29 Mercaptopurine
10-30 Mercaptopurine
10-31 Mercaptopurine
Check counts frequently - may need transfusions


DAY 42

Check counts frequently - may need transfusions
Nov 1 Mercaptopurine VCR/PEG ASP shot Bactrim @/Children's Hospital
Nov 2 Bactrim
Nov3
Nov 4
Nov 5
Nov 6
Nov 7

DAY 49

Nov 8 Vincristine Bactrim @Children's Hospital
Nov 9 Bactrim
Nov 10
Nov 11
Nov 12
Nov13
Nov 14

DAY 56
Nov 15 Labs and evaluation Bactrim
Nov 16 Bactrim
Nov17
Nov 18
Nov 19
Nov 20
Nov 21 Hold PM Lovinox

DAY 63

Nov 22 Bactrim Hold Lovinox AM IT Methotrexate Bactrim
Nov 23 Bactrim

Move to Interim Maintenance if Possible

____________________________________________________________________
Medications given in clinic or hospital:
Cyclophosphamide (Cytoxan) - IV in hospital with fluids; side effects: nausea (given with Zofran), low counts
Cytarabine (Ara-C) - IVP with zofran; side effects: fever, rash, dropping counts, mouth sores, poor appetite
Vincristine (VCR) - IV push; side effects: constipation, jaw/leg pain
PEG Asparaginase (PEG ASP) - IM shot into muscle; need to stay in clinic for 1 hour after receiving
Side effects: allergic (hives, wheezing, swollen lips); can also become red, swollen and slightly sore right around site
Ice helps the best for IM injections - the EMLA only numbs the top of the skin so is not very helpful for the shots
Medications at home:
Mercaptopurine (Purinethol) - oral chemotherapy given in the evening
Bactrim (sulfamethoxazole-trimethoprim) - oral antibiotic to prevent PCP pneumonia; twice a day on Mon & Tues only
Ondansetron (Zofran) - every 8 hours as needed for nausea; will receive dose in clinic with Ara-C if >6 hours since last dose

Thursday, September 09, 2004

Mary-Elizabeth is getting tattooed

She will have three freckle marks on her back. For the rest of her life. See God gets you. I told her she never was to get a tattoo and now I am paying for it. I said no Cell phone and now we have so many phone's I want to scream.

Each and every step is a new challenge. I am just overwhelmed with it all today. I found out today that Regents will not pay for her Zofan without a fight.( This is the drug that keeps her from getting nausiated. They would prefer we use something that makes people crazy later in life. Karyn is asking for 100 they want to give me 12. I may have to see what they cost. I don't have the strength to fight it all. I guess the insurance company would like me to get fired so that I could not pay the premium and then they would not have to pay for the next 29 months one week of treatment. The reality is she will always need extra care. I loved being told by the RadioOncologist that the radiation we are giving her causes brain tumors. Isn't that where we started?

Oh, we did an ultrasound today. The tech couldn't find the blood clot, in either side of her neck. I did get to see the corroded artery sitting right under the jugular vein. It was great.

Okay, I will quit whinnying. I am just really dreading the next 65 days. I am dreading she won't be in remission and won't get to move on to Consolidation. I dread we are moving on to Consolidation and have to face a whole new set of drugs and side affects and more side affects. God, what did I do to have to go through this? What did I do so M-E has to go through this? I know there is no answer to those questions. I just need to ask them on occasion. Should I worry about 2400 rads? They are going to turn her into Dorrie for a while. Oh, well, we will have a chance to see what she will be like when she is a little old lady. God, I want her to be a little old lady. So here we go, pray for remission on the 13th. She was diagnosed on the 13th, she should be in remission on that day. Before this is all over she may just go from 12 to 14.


Tuesday, September 07, 2004

We saw Ellie Today

Every day at the hospital is a new adventure in many ways. We were there around 9:10, I do stop for a coffee and a snack so that I don't get too grumpy. (What a surprise, low blood sugar is not good for the brain.) Things went okay. Weighed in. She only lost a pound, blood draws, dressing changes, cartoon watching and lots of waiting. Lots of Chemo but we can report we are done with Asparagus shots. There are two more Pre Asparagus shots in October and November but not 9 in a row.

We were sort of antsy and then saw Ellie. Ellie was M-E's first roommate. She is 2.5 years old. She has a twin named Sam and her parents are architects. They found a tumor the size of a Grapefruit in her brain. She was in for treatment when M-E was first there. She is one sick little girl that has figured out some big people are not nice.

She and I became sticker friends. I gave her stickers and she was my friend. I was able to let her pick out a couple today. She smiled that great, sort of hesitant smile and said thank-you. She is obviously affected by the surgery and the treatment. She has such a pure pure smile. Then she turned to show her dad the stickers and I could see that she had Emla Cream on a spot on the top of her head. In cancer world that means she has a port of some sort and she was in for treatment. They are putting the chemo directly into her brain. I shuddered, counted my blessings, said an extra prayer for Ellie and then one for us.

Things are crazy. I cann't get stuff done in the way I used to be able to do it. I have this new nurse job and am not very good at it. I try but I am just not cut out for it. Nursing could use some streamlining. So why is it that the two kinds of insulin cann't mix in the same place as the Heprin? Do they just say no because they can or is there a good reason. How come no one can tell me the history of the variouse drugs other than Vincristine. (Made from Perriwinkle Plants.) Who was the first one to figure all this stuff out. In the old days I would have been looking this stuff up. As this point I just have to get through this evening. One Lovanox shot, I am not giving her insulin because she is not eating and I am now terrified of low blood sugar. Some oral pills, a heprin flush, a temperature and then we will see. But M-E does not have a port in her head.

The Bone Marrow is next Monday, the 13th of September. The "R" word we are hoping for is REMISSON.


Monday, September 06, 2004

We Are almost done With Phase One

I guess I should count the phases. I will be content at this point to just be happy to be almost done with the first phase. From how things have gone thus far, I should know that all the pre-planning, the anticipation and thinking she will react to anything like a normal patient is a silly idea.

She has her last Chemo for this round on Tuesday. She is done for a week except for one more IT (Interthecal= medication into the spinal cord) and a bone marrow test on the 13th. Then we are off for a whole week. Pray for high ANC numbers, non-existent lewcemeia cell in the bone marrow and a new supply of tequila for me.

We are missing Sadie. I need to start pretending to walk her. I need to get out of the house. I have not given up my membership to the gym but should for a while at least. I need to return flute we were buying since lessons are not going to be happening. I need to do some real work today or at least try. I feel better when I can work on other people's problems and help them figure out what is going on.

How do the doctors do it? How do they have to face 50-85 ALL patients a year knowing they don't have a 100% cure rate. I know that 100% of my clients will get divorced, if they want to do so. I am now glad I only received a C in my first semester of chemistry. It took me another way.

Oh, just so I can be consistent. India is fine this time of year. I encourage everyone to call MSN and spend 45 minutes on the phone. My favorite part of the conversation was with the gentlemen that then told me I should not have called them but rather QWEST. Someday we will have to sit around and determine whether or not the biggest problem during this time was the ALL or the technology.

Sunday, September 05, 2004

It Was Not Me IT WAS the Modem

So, when you think you have all you can possible deal with in life, God sends you technology to really see if you can hack it. It is a long ugly story. India is fine this time of year. I was on the phone for hours and finally after Quest tested the line they concluded I need a new Modem. Oh, well. Lesson for the day: Nothing is easy. Everything is a challenge but sometimes you are vindicated. I do have a better grasp as to what I am expected to know when talking to those who hide behind the voice of "Tech Support". You better know your operating system and what version of MSN you have. You better know you RAM not to be confused with ROM. Who are these people. I realize that there is a place in the world for the truly bright and that if we don't keep them occupied we get more UniBombers and Charles Manson's but for God's sake, how many languages do I need to learn this month.

So we are off the hospital for an asparagus( L-asperiginace) shot (injection) and a blood draw. We will be drop off our used needles (sharps) and assorted garbage ( Medical Waste). I am hoping we don't get caught in too much Husky traffic (Crazy people that sit in a stadium after consuming and while consuming large amounts of beer)

My brother David is here for a couple of days and has been able to get some projects done. He and Alex are always a lot of help.


Saturday, September 04, 2004

We have had better days and nights

So let's see. The dishwasher is making a funny noise or maybe I am just hearing it for the first time. The Endro docs don't know how to treat or manage M-E's blood sugar. We have to test at 2:00 am which is great. Now I set an alarm to wake up and worry.

I can not get the DSL line to work. I would love the call tech support but then I cannot call and us the computer at the same time. Yes, I am being whinny. Sleep would be a good thing but the schedule that is set up for the various procedures requires attention every 3 hours so , I guess this new baby's name is Lue and we have lots of midnight feedings. I am sure there is a light at the end of the tunnel but it feels like a black hole at the furthest reaches of the universe and they are going to turn off the Hubble soon so we can have more toys for wars. Oh, can you tell I am in one of those moods?

Sal


Wednesday, September 01, 2004

We have a "Nurse Visit" Today

So, shall we start a pool to see who can guess when we will come home. I want to say by 5:00 p.m. because now I am ready to be at the hospital. We have bags, new ones from Landsend have not been packed, but old ones have. We have communication devices, computers, books, fun hand projects, in-patient and out patient notebooks. We have a plan. WE ARE READY

Good news. M-E has been able to go to some school. She made it a couple of hours yesterday before the heat and excitement and chemo induced tummy rebellion began. She was able to get up and to school today and I have not received a call. She is such a trooper. She has a smile and great attitude. She is a tough kid. We learned yesterday that it is better to take the $42.00 pill before you get sick.

Next challenge, which lap top do we get her. I have looked and every time I am ready to click, I decide I am not smart enough to determine what we need.

We are off to get our counts. Hematocrit, platelet, WBC and the all important ANC and of course #6 asparagus shot. Three more to go. Two more while awake. She hates these shots.

The ANC has to be over 500 for school to be allowed. If not she will be at home with Grandmother.

One day at a time.

I wish I could make plans but then I plan to not make plans and I think that is a plan.