Meet the Twins: Hope and Fear

We all hope that everything will be alright. We all pray that there will be good results for hard things in our lives. We all trust that things will turn out all right but then we also are realistic enough to know that on the flip side of alright is not good.

HOPE is what everyone encourages and we all strive for in the end. Hope is a gift, one that allows us to move through each day and face each new challenge and disappointment, we just keep hoping. It seems to endless and boundless but so is it's twin FEAR.

I guess it sort of makes sense that we don't even need Hope if Fear was not around to make us wary. Wary of the future, question our past and uncertain of the present. Fear drives us to take those next steps, Hope gives us the ability to do so.

We have traveled this journey of "treatment" for her leukemia because of our fear of the alternative. Hope has been our mainstay. We have all tried to hang on it it knowing that sometimes hope, good thoughts, faith, candles, pilgrimages, a corner of Marys, healing ceremonys, time and all other good things in the universe aren't enough. That is when we turn away from our fears and hope again for the best and right answer.

Pumpkins

We have done our duty, sacrificed perfectly innocent pumpkins and formed them into shapes that are humiliating but cute. Candy is hiding in the car because I have no ability to use it for it's designed purpose. We are ready for Halloween.

Dark Mornings but bright Afternoons

It has been very dark and icky and cold and foggy but then the sun comes through. Waiting for the bright makes the cold and icky tolerable.

We are in some fog right now. Waiting for this to be over. I have been told that when we are done I will be a nervous wreck. I will be anxious and worried and not able to concentrate. I will be sure that every sneeze is a signal.

I wonder what I have been doing for the last two and a half years. Oh, well. We shall see what all of that turns out. I don't know why we would be more worried given that we will still be going to the clinic every month. Sort of like it is now.

World of wisdom from Mary Lanham. One of my family members was complaining to my mom. She asked if they could see the end of the tunnel and they whined no. My mom told them to "Quit looking"

I guess that says it all.

Well When it Rains is Pours

I could not think of a better title for today. Buckets are being dumped all over Seattle. Yes, we are surprized each and every time it rains here. We are really shocked when it pour and is dark and the storm sewers fill up and the streets flood and the cars slide and the fog rolls in and the crashes begin. People always say, "Well it is Seattle, What do you Expect?" And those of us here always agree and then continue to be amazed.

That is sort of where I am today. Amazed, Shocked and not very prepared. M-E has been sick since last Wednesday. Sore throat, head ache, body ache and then cough and nose running and more aches. It should be old hat by now. Some child went to school and spewed germs into the air and my daughter was in the way. She was able to fight it off mostly but then since she carries around less than half a normal white blood count she could only fight so long.

So day 7. She is home, I am at work, I can only be gone so long and she is freaked. She has missed so much school she is feeling overwhelmed.

I guess the conversation should go like this: "Well, she does have Leukemia!, What do you expect?".


I guess "expect" is not the right word. Hope is a better word. I hope we can make it through the next 2 months. I hope she can get caught up with school. I hope she does not fall so deep into a funk that she can come out of it. I hope we can get back to the place that flu lasts a couple of days and colds only bother her for a few days.

Maybe in Seattle we hope for sunshine.

Tuesday the 17th

This picture was on my computer and it some how ended up here. This is Henry and Mary-Elizabeth when he was just an itty bitty pup.











This day has no real significance. It is just a day. One that started out a bit slow but will pick up soon. It is a day of quiet contemplation. The world is a bit dark in Seattle. The clouds are close. When they are so dense, the sound does not escape. Even on the 36th floor there is a fair amount of street noise. Buses, cars honking, construction cranes, fire and police. It is often startling at how noisy things can be.





Things are noisy in my head right now. I am secretly counting the doses of pills I have to count out and the appointments we have left. I am planning what to do on that last day of treatment. Do I take cupcakes to the school? Do I organize a special family event? Do we take Dr. Tracy and Nurse Brundige to Pallisaides? Just how do I make the occasion? We are having a huge sushi party later.




The happy, ending noise is cluttered with the noise from the world of Elise R and her upcoming transplant. I spoke with her mom yesterday. She has that sound, that , "oh, my God, this is real," sound in her voice. It just makes me want to go crawl in her skin and help anyway that I can. To be supportive and helpful and to take away some of the fear and the pain and the uncertainty. Susan is the type of person that is worried that our connection to her is causing us stress. I understand her worry in a way that only a few people can. It is the "I have been there" sort of understanding.





Empathy is a great thing, empathy with life experience is a home run.

We have learned many lessons during our battle with Leukemia. I had to learn to begracious and to receive. It is easy to give and it might be better if you trust all those that say "it is better to give than receive". But then to receive takes you through a whole lot of emotions and internal conflicts.

Isn't there someone else that needs it more?

How will I repay this kindness?

This situation must be very very bad?

Do I really deserve this?

Then I finally realized that I should just go with the flow. This was the time I really needed help and needed to let it happen. A lot of this process was about letting things just happen.

There is so much in our lives we have no control. No matter how much planning, no matter how much education, no matter where you live, no matter what political party you join, no matter how organic the food is that you eat, there are no guarantees in any part of our lives.

We can only count on change and upheaval and chaos and the kindness of others.

Message to a Friend.

Today Elise goes to the Fred Hutchinson the "Hutch" to begin the evaluation for a transplant. She is the child that was diagnosed with ALL in July of this year. While she has ALL she also has a brand that is laughing at Chemo Therapy. She has skipped 2.5 years of treatment and gone straight to transplant.

Transplant world is another universe. It is full of lots and lots of tests and appointments a the Hutch. Then if all goes well and there is no evidence of cancer in her system, she does a few days of total body radiation. When every part of her bone marrow is dead she gets new batch and then waits. There are a magic 100 days.

Her mom was anxious the other day and I sent her the following e-mail. As I wrote it, I realized how hard this has been. Sometimes I look back and wonder how we made it to the end of this deep dark tunnel.

Message to Susan R.

I have been working on getting my blog in some sort of order, in notebooks and ready for a serious read through and edit. I have been re-reading the entries from two years ago and find that I did much more screaming. Pleading was my thought but just being angry at God was a part of it. I found little solace in any of the screaming but loved that God let me do it and would not think less of me. I complained a lot to Mary. I was not raised Catholic but I love that there are lots of saints that seem to have different jobs. I am sure there is an organizational chart somewhere.

This whole process is so hard on so many levels. So much pain our children have to endure. The disappointments are deep and lasting and ones we never want them to even know about. There is no way that they will not carry scars away from this process. Physical and emotional. It is just how it is and so hard to accept. Mary-Elizabeth has the kind of skin that creates big scars. She has hugh striation of her skin from the rapid weight loss and gain from the steroids. Her port scar will fade at some point but will be there all her life. She has 6 dot tattoos that will be with her. I asked about removal but they said they were a message to her future doctors and needed to stay. Future Doctors. Is that a good statement or a bad one. Do we want them to have to see doctors all their life or should there be solace that they will see them in their future.

It has taken me a long time to process all of this. All the vast changes and detours that Leukemia brings for everyone. There are no magic words, it is sort of like giving birth. A process and no way to short circuit the system, 9 months are required. The difference is that we have a much better idea about the outcome.

Our children know that we have expectations that involve them. They know that they receive lots of good cu dos for doing well in sports and school and being great people. It becomes a part of who they are and how they see themselves. The adopt our expectations and make them there own. Many of them are sort of warped in the process. I was running around making an elaborate costume for M-E when she was little. It had feathers and jewels and lace and......... (over the top). I was upset that it was not coming out right. My very wise mom asked me what I was doing and why and I told her I was being a good mom and making a special costume for Mary-Elizabeth. Mom sort of laughed and asked if I remembered her ever doing more than cutting a couple of holes in a sheets and announcing that I was a ghost. I had to laugh.

I have thought a lot about those expectations during the last couple of years. M-E played basket ball and Volley Ball she was signed up for crew. She was a leader in school projects and chosen to do lots of special things. She received straight A's. It was so so hard to have times during treatment when the days activities was a trip from the bed to the shower to the couch to the bed. I have to fight all the time to not push more. The bikes are in the garage. Greenlake can be a short walk. Movies can be rented on DVDs. Books can be listened to on tape when the brain is recovering from radiation. The affects of Vincristine wear off. The body does come back. Now no one can say how or to what extent.

Adaptable, they are adaptable. I wish I could be more so but then what I have learned is that people look at you and me and all the other mothers and are amazed at what we have done, what we have to do and how we are still able to face most days. The need to have maintain strength for our families and our children and ourselves does work. One small step at a time. One small miracle at a time. It is so hard and so discouraging.

Ms. Susan your daughter will make it through all of this. Jared will be a better person for having this experience. You and Michael will never take a moment for granted.

Well I have to go and pretend to be a lawyer. It is Friday the 13th and M-E is home. This is her most hated day. She was diagnosed 26 months ago. I can so remember being at month 2 and 3 and wondering how we were going to make it through. But we keep at it. I don't know when it will feel like we are through.

Good luck at the Hutch.

Before and Afters

See, it takes time to arrive a the final result. Time and patience. I still have not learned patience. Someday, if I am patient and learn more common sense.

Last night Idid something so stupid. I told M-E that I was not going to put up with "the hair in her eyes" much longer.

Oh, my god. The wrath and tears and the........ it was ugly. I was read the riot act about how she had to be different from everyone else for two years and now she could be like they were..... fill in the blanks. Then the tears and the sadness and the realization by the mother that all that time she was so "okay" without hair was just not the truth.

This child had depths that keep surprizing me. Sort of like my walls. I guess sometimes we have to open them up, examine them and then fix them again.

Now, how do we fix me. What Mother can keep her mouth shut about hair?????

Each Day a Step Closer

A bit of the back splash. We started painting tiles in June of 2004. I guess it is appropriate that they are going up now.

The Good Things in LIFE are very very Messy

I have not even counted yet. I know the following. We have no more jelly jars left, some of the rings were stolen from already sealed jars, we went through almost 40 pounds of sugar. You can buy organic 100% lemon juice. All the batches were made with grape and black berry juice but one. We still have juice canned for next year. I won't let anyone know what they are getting for Christmas.

Life is so so messy but the best things come from those messes when you let the chaos reign.

A View From A Very Different Place.

I took a reluctant and sleepy child to Children's for the day yesterday. She had to do a Neuro Psyche evaluation. They are trying to figure out, what, if anything was done to her brain during this process.

Go figure, radiation and chemo into your brain does not always create the best result for learning ability. I wonder why that would be? Anyway this is the second. There will be another one in about 18 months.

I must not have gone on the first one. I do not recall spending endless hours in the waiting room. Don't be mistaken, this is a great place to wait. It is in the new wing and all the walls are such a soothing color of hospital white, not quite white with lots of colored fish.

I was struck by the difference in the two waiting rooms. At Hem/Onc the kids are bald, and sick and carry around feeding tubes. They are generally quiet. The parents are accommodating and worried. There are some upset parents but generally children are treated with care and concern. As we all sit there we all know that we are fighting a mighty battle. Our tools are few but we use them with gusto. There is a lot of sharing between parents. Parents have spent time with each other in the waiting area, on the floor and in the cafeteria. There is sense of belonging, a sense that we have to support each other because no one else can understand what we go through.

Parents come into the psych waiting room and they are very much alone. The child looks normal but you know that they would not be sitting and waiting if there was not a problem. Not in the middle of the day. They seem lost, don't talk with each other and have that " This is overwhelming" aire about them. Lots of short tempers and lots of child "management".. Joel was there yesterday. He came in and went straight to the video game machine. He looked at his selection, hooked it up and then began to play. His father stopped him and asked that he look at him. Then the dad said,

Now, Joel , Dr. X will be out soon. When he comes out and it is time to go in to see him I don't want to hear from you: Let me finish, I am almost done, I want to get to this last place, just a minute, Can I have 5 more minutes." Joel agreed. Father was happy and then Dr. X came out. Joel was told it was time to stop and he said: May I have more time Please." The father had that look on his face. The, "I can not win, no matter what I do or what I say"look. Joel had not violated his terms of play. Now this is a child that would make a great lawyer.

Shame, I felt shame in the room as the parents trapesed by with surly children. If felt frustration as they tried to cope. I felt a certain amount of despair.

We all have children in trouble in one way or another. No one is there because it is a fun place to hang out.

I think Hem/Onc is running on Hope. Hope for a cure, hope for no sideaffects, hope for a good future for the kids. We live with uncertainty but it is an uncertainty that can keep be measured and test and counted in some way. In the Psyc department there are no real measures, not way to tell if things are better or how they will progress. The Mind is such a strange part of our body.

I am glad I spend more time in Hem/Onc than Psyc. Who ever thought that would be the case.

Wise Words

"Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald

I love the thought. She is so right. We have received a million cups of tea. We have served a half million more.

We are so so close. We received our last calendar. This should all be over by December 22. She has her last spinal tap with a bone marrow biopsy at the end of November. If everything is clean, she finishes her last oral chemo on December 7th. Then one more surgery to remove the port. We begged to keep the port but they would not let her. Something about infection risk. They are so worried about that sort of thing. Go figure.

I had a long talk with someone about relapse. I guess I am hoping I can really hear about it now. So here is the scoop. If children relapse during treatment the tumor is usually a close relative of the original almost a clone. It sort of goes away, feeds on the chemo and comes back with a vengeance. It is not pretty. Transplant, 30% quality of life discussions, a place that tea would be a constant companion.

If the child relapses post-treatment, it is a completely new kind of cancer and you start again. This stuff is tricky. It is smart, it is evil. It flys under the radar and does lots of damage before you even know.

We are focusing on the:

If you make it through treatment and don't relapse you chance of getting it again is like that of any other person. I am going for lightning not striking again.

I will be needing lots of tea for the next few months and then maybe a stiff shot after that.

New Floor for the Kitchen.

Here is the new floor. Some say I need solid colored rugs. Most might think I need a new sense of color and taste. I just love my floor. So did the floor guy. He came here first and then went to pick up his stuff. The guys in the store were concerned someone had written down the wrong numbers. Silly boys.