Monday, September 29, 2008

"Adam's counts are good"

"Adam's counts are good." That was the text I got from Martha at 402pm today. That meant that Adam's last chemo session was on schedule. We worried that once again Adam's counts would be under and he'd have to wait, again, for his supposedly last chemo treatment. No more waiting. His mood was almost giddy Martha said. When treatment was over he ran out of the clinic and out of the hospital. Hooray!

We will celebrate in style at some point but tonight we are simply basking in the knowledge that the nausea, the fatigue, the saline push are know more. Yes Adam will have to make regular trips for ongoing imaging. As much as every 3 months. But compared to the inpt chemo, the radiation and the increasingly agonizing trips to the clinic that will be a piece of cake.

After the session was over Martha took Adam to get a new gameboy game. I took Camille to her soccer practice. One of Adam's friends, Jack, was also there with his younger brother so I called Martha to see if Adam could come and hang out. Normally, right after chemo, Adam would be lethargic and moody. Not today. He came right over and was running, playing, laughing.

This morning I dropped Adam off at school. As I watched him walk and join the other kids as they entered the school I breathed in all the pain, isolation, anger, sadness and frustration of the last 6 months, and I breathed out all the health, excitement, joy and 11 year old adventure that awaits Adam for the rest of the school year.......God willing.
THANK YOU FOR THE DONATIONS. We've raised $510 so far.



http://www.active.com/donate/ltnNashvi/2471_ebrinson1

Thursday, September 25, 2008

Wednesday, September 24, 2008

A prayer for Nan

If you have been following this blog you may have read a few post responses by my friend Nan. Nan has been incredibly supportive both as a friend and a colleague at work. Today Nan's mother died unexpectedly. She is an older woman whose health has been fragile but Nan thought she was making progress. Today's sad news was a complete shock. Please keep Nan and her family in your thoughts and prayers.

For Nan..

Mother's Evening Prayer
O gentle presence, peace and joy and power;
O Life divine, that owns each waiting hour,
Thou Love that guards the nestling's faltering flight!
Keep Thou my child on upward wing tonight.
Love is our refuge; only with mine eye

Can I behold the snare, the pit, the fall:
His habitation high is here, and nigh,
His arm encircles me, and mine, and all.
O make me glad for every scalding tear,

For hope deferred, ingratitude, disdain!
Wait, and love more for every hate, and fear
No ill, — since God is good, and loss is gain.
Beneath the shadow of His mighty wing;

In that sweet secret of the narrow way,
Seeking and finding, with the angels sing:
'Lo, I am with you always,' — watch and pray.
No snare, no fowler, pestilence or pain;

No night drops down upon the troubled breast,
When heaven's aftersmile earth's tear-drops gain,
And mother finds her home and heav'nly rest.

$310 so far. Thanks for the donations.


Martha, Camille, Adam and I are going to walk in LIGHT the Night as a family. I have sent the word out and we have received a great response.


Thank you!

Tuesday, September 23, 2008

DONATE


DONATE NOW! please

More about John

It is truly amazing how individuals can have such huge influence on others. Teachers have some of the most powerful influence. I am reminded of this daily with both of my children in 'real' school now.
A few posts ago I wrote briefly about my brother in law John who recently died of cancer. John's passion in life was teaching. He did what he loved. Who could ask for more? In tribute to John I selected only a few of the many tributes written to him by former students.
I couldn't help but think what folks will say about me when I am gone. We touch people for better or worse every day. No one gets through this life without making a wake. We are only human and will dish out our share of positive and negative energy. John certainly had his share of both but having read and re read what others have said about him I am truly proud to have known him and been part of his family.
Please read for yourself.


To Mr Fuchs family & friends: Mr Fuchs was one of those teachers that you would never forget. I never had him as a teacher but I would go to him if I had an english question or just to talk . He would always encouge me & tell me not to worrie about the small things. When I told him that I was leaving DLS to go to another HS He said" if you need help any time with the other school english come and vist and he would help" . He will be greatly miss by all of us who had him as a teacher at DE LA SALLE and who knew him. Mr. Fuchs please watch over your family, friends and your former students. May god bless you and may you rest in peace.Love Kathryn (Katie) Richardson class of 2002

Kathryn(Katie) Richardson (Columbus OH /NOLA, OH)
Contact me




Mr. Fuchs was the best teacher I've ever had. When I didn't understand something in the text, he was patient and helped me many mornings before school started. He really cared about everyone and wanted them to do well. I miss his funny lectures and the faces he would make in explaining things. And I miss the Mike N' Ikes that he use to pass out to everyone in class! He is by far my favorite teacher and I will always remember him.

Thao Tran (New Orleans, LA)
Contact me



Mr. Fuchs was without a doubt my favorite teacher of all time. He inspired me everyday to be a better learner, observer, writer, reader, and person. I always loved the way he made the class laugh but still got his point across. He obviously cared about his students more than any other teacher I can remember and it showed in every way. Whether it was bringing cupcakes on Fridays (against the Administration's wishes) or getting under his desk and putting a metal trashcan over his head to illustrate a part of Canterbury Tales, it was clear that his students were always on his mind in one way or another. I was so blessed to have been able to keep in touch with him long after I graduated from De La Salle. I would practically run to DLS from UNO to show him my grades in English classes and was so very proud to let him know that I was following in his footsteps and becoming a teacher just like him. I only hope that I impact my students the way he impacted my life.All My Love,Caroline N. Laurent De La Salle Class of 1999

Caroline Laurent (New Orleans, LA)

LIGHT UP THE NIGHT


http://www.active.com/donate/ltnNashvi/2471_ebrinson1


I am walking in the LIGHT UP THE NIGHT event in Nashville on October 16th to raise money and awareness in the fight against leukemia and lymphoma. Please go to my Light Up Website (above) and make a donation. It doesn't matter how small.

This is my first small step toward giving back for all the wonderful support Adam and our family have received. I really appreciate your support!

peace

Ed

Friday, September 19, 2008

"Here comes the weekend - I get to see the girls" --the Jam

These messages are a record but only of just so much. Hopefully they have provided information about Adam and his treatment and how we have been dealing with it. Sometimes I wish I could write more but I have to maintain some boundaries and I wouldn't want to 'over expose' myself.



This week has been pretty good for Adam. He has his next and hopefully last chemo treatment in two Mondays. School can be a challenge but when I step back and look at the big picture he is doing great. Better than I ever did....and I didn't have to go through chemo while doing it!

Missed assignment here and there won't kill him and I am trying to take a more zin-like approach (I just wish it wasn't all in the same class!).



Work is another matter. But that is where I have to leave it to the imagination.



Have a fantastic weekend.

Monday, September 15, 2008

Going strong

Adam had a really good weekend. He played hard in his soccer game. His team is now 2-0. Adam is a very good defender. He specializes in disrupting the offensive drive and getting the ball back to our forward strikers. We had practice on Sunday. Quite a workout, but he kept up. Adam also had to get his first major project for school completed. He made a power point presentation on cerebral palsy. A woman who works at Vandy Childrens has CP and Adam focused on her story. You can check her out at her website http://www.rhondaclark.net/ . She was definitely the most friendly person at Vandy Childrens Hospital.


Adam will, hopefully, have his last chemo session in about 2 weeks. Then he will be scheduled for all the imaging he had at the beginning of treatment. And then, assuming he is clear of cancer, he will be done. At some point his port o cath will be removed and he will begin his post treatment check ups. Right now I think that will be for 5 years but I will let you know for sure when I find out.

Have a great week.

Friday, September 12, 2008

Friday.....aaahhhhh.....thank God.

Thursday, September 11, 2008

911

We were sitting to a delicious meal. One of Martha's originals. Chicken and onions with a nice gravy. It's our own comfort food. The mood around the table was good. Every one was chatty. Adam threw up all of his rice. It took a while. Then he asked for water and we give him an anti nausea pill. We didn't see that coming. Adam didn't seem that distressed by it. None of us did actually. Just another day living with cancer and chemo. He finished vomiting, drank some water and took an apple to eat. Camille helped clear the table and the night went on like normal.


My brother in law John died last week. He was a writer and a musician. To pay the bills he taught high school and loved doing it. This is apparent in what his students had to say about him in the OBIT section of the New Orleans newspaper. Check it out. Go to http://www.nola.com/ and click on obituaries then go to John Fuchs.

This day seemed normal enough, but I guess it isn't. Seven years ago I remember exactly where I was. At work about to go to yet another meeting when I was on the mood disorders unit and passed the group room. Patients were focused on the tv more than usual. The first plane had just hit the tower. We all watched as the second plane hit. We had our meeting anyway but it didn't last very long. Martha called me on my then new cell phone and told me that the Pentagon had just been attacked. The meeting ended and we all went to a tv to watch. Adam and I watched the last part of 93 United on TV the other day. He asked what it was about and we talked about the events of that day. Adam said, "How could people do something so horrible and think it is right?" I had no answer.

Tuesday, September 9, 2008

Happy Birthday Dad

woohoo. Adam's white blood count was where it was supposed to be yesterday and he was able to get his chemo. He has one more left in three weeks. He's doing pretty well. Went to scouts last night. He's having a hard time remembering to bring home homework....but that has nothing to do with his cancer, more with being an 11 year old.


Today is my Dad's birthday! HAPPY BIRTHDAY BEAR!

love

e

Sunday, September 7, 2008

back to work tomorrow

One week off of work has its blessings and its curses. Getting work out of my brain for a week was probably good for me, but if I'm honest I'd have to admit that no work can also make me a little antsy and that's no good either.

I got onto Adam something awful last night because he was terrorizing his sister for the umpteenth time. I got in his face and yelled at him and sent him to bed and then felt guilty about it all night. I apologized this morning and then asked that he stop being mean to Camille. He was then very cooperative and friendly the rest of the morning. Weird.

We had soccer practice today. Adam did well. Initially he was in a bad and fragile mood because his friend Antonio had accidentally knocked him in the head. Adam has become particularly sensitive to knocks and bruises during this latter part of his treatment. I took him aside and encouraged him, with a little firmness, to shake it off and get ready to practice. He did and the practice went well. These things can go either way. There is no play book and I am batting about .500 when it comes to good decision making. That might be great in baseball but it sucks in life.

I need to find a way to get some better self discipline in all aspects of my life. I think I am really ready to be back to the grind tomorrow.



Amen.

Thursday, September 4, 2008

damn, damn, damn

Damn, damn, damn. Once again Adam's white blood count was too low. In the 400s instead of over 750 where it needs to be to continue and complete his chemo. Another office visit, another painful needle going into his port o cath, another missed half day of school for nothing. Dr. Kuttesch also informs us that Adam actually has two more chemo sessions to go. Our next appt is on Monday to check his count. If it's over 750 he will be infused, if not then we wait until his blood is right. His final (and we really mean it this time) chemo session will be three weeks after this next one (whenever that is).

Dr. K was somewhat perplexed about why his count was so low. He asked if Adam had been sick, feverish, etc. Not since two Mondays ago. Actually his health, as measured by energy level and mood, seems to have been better while we were down on the coast. Whatever the reason, this continues my frustration with these last weeks of treatment. They seem to be dragging way, way out.

My parents gave me a laughing Buddha statue for my birthday. It now sits at the front door and will hopefully remind me to keep all in perspective, focus on the positive, and breathe one day at a time....

After today's fruitless clinic visit Adam and I went to eat some pizza at Pizza Perfect, right across from Vanderbilt, and then to Borders book store. We had to compete with Vanderbilt-South Carolina football traffic to park but the book store was a nice debriefing from the clinic. Adam got his favorite, Charlie Bone #6 (I think), I found something too. Just hanging out in the bookstore helped chill us down I think.

Camille has a make up soccer practice this afternoon. There is a tennis court at the park where she practices. I might try and get Adam to hit some balls.

Last night Martha and I went to see Squeeze. The show was great. They referred to themselves as their own best cover band which only made me feel old. But they played loud and sharp and just about all their hits. Aimee Mann opened. Couldn't have been better. Mary, Ben, Patrick and his friend Zack also joined us. They evacuated from New Orleans but returned today. Good times...

Wednesday, September 3, 2008

Goodbye John

Several years after being diagnosed with cancer and several months after relapsing my brother in law John died early yesterday morning. He had been in hospice for several weeks.



John and my mother in law Connie were evacuated from New Orleans in Mississippi with my sister in law Connie and her husband Scott.



John's sardonic humor, intelligence and loving curmudgeon sensibility will be missed.



When I told John that I was going back to school to become a social worker many years ago he gently encouraged me not to be the type of social worker who projects a superior, stony faced, objectivity in their work. I think John had run into this type of social worker a lot in his years of teaching school. I frequently think of his helpful career advise in my work at the hospital. I hope that if John had seen me work he would not have been disappointed.



Thanks John.

Monday, September 1, 2008

best laid plans

This is not it. Friday I picked up Adam from school to go to what we thought would be his last chemo session. I reminded him on the way to the clinic that 'this is it', no more chemo. I was hoping he would be a little more chipper, or at least not flat out rude toward the clinic staff, because there would be no more treatments after today. It worked a little. He wasn't quite as dismissive of the nurses and the doctor. We had a new doctor, Dr. Stephanie Lowas. She had just joined the clinic a few weeks ago. She was very nice and very good with Adam. She also had some disappointing news. Adam's white blood count was 250, about 450 less than it should be in order to go forward with the chemo. This makes sense because he had just had a chemo treatment on Monday. Chemo brings down his white blood count. Damn, damn, damn. His 'last' chemo would have to be rescheduled for next Thursday. Adam was not happy, but he didn't fall apart either. He quickly realized that this meant we could get started with our planned trip to Dauphin Island to spend some time with Juju, Bear, Lucy, Jay, Tucker and Julia.



Martha could not go down south. Her brother John is dying of cancer. He is in hospice and she has to be ready to fly down for the funeral. Also she just couldn't go on 'vacation' while her family is preparing for John's death. Also she had to work all day Friday and couldn't leave early. Also, she could use the break.



So Adam, Camille and me were driving down to Gulf Coast planning a rendezvous with Gustav. Makes no sense at all. Except that Adam really wanted this trip and there was a chance that the storm would go further west and Dauhpin Island would remain unblemished this time. I kept telling myself this as we hit some of the worse traffic I have experienced driving to the Alabama coast. I also kept thinking, "Am I a complete idiot to be driving my kids toward what appears to be a major hurricane?!" Ah, yeah, I guess I am. It took us about 9 hours. We got in sometime after 11pm at night.



Saturday was good. Adam and Camille, Tucker and Julia, had a fun time on the beach, looking for shells and hermit crabs, playing in the pool and of course watching football. Cousin Finn joined us later. Adam sees Finn every summer. But they still had to warm up to each other and I imagine Finn was a little nervous about how to deal with his cousin with cancer. Finn did great. Adam did pretty good too. With a little encouragement Adam, Finn, uncle Jay and me got into a wicked keep away pool football game. It may have worn Adam out a little but it was great to see him having a such a ball. That night we all watched Alabama beat up on Clemson. Adam nodded off during the third quarter. Finn gave us a lot of color commentary. Good times.

We figured that our time on the Island was going to be brief, as in we would be leaving Sunday, so I made the decision to cancel the party we had planned for all the great folks who have been supporting Adam. Sorry we couldn't show our appreciation more concretely but please know how much we appreciate your prayerful support.



Sunday morning the condo owner sent some guys over to board up the porch doors. So much for the view. We also got word that the Island was being evacuated. We casually loaded up and headed over to Fairhope. Luckily the traffic flow from Louisiana and Mississippi was flowing. Heavy, but flowing. We unpacked. This whole time I was trying to practice what I think I have been learning over the past 6 months. Breathe, flow, and go with it. Hanging out with one's family gives many opportunities to practice this skill, but add an oncoming hurricane and an interrupted vacation and it's like your final exam of acceptance.



We cancelled the party but I insisted that we invite my cousin Carson, David and their kids William and Cecile over for dinner. Carson and her family have been particularly supportive. As I have written before I think, Carson has been steadfast in both morale support and very practical support. She and family took Camille to Kanuga in the middle of the summer. As I told Carson, this was so special because this summer will be the first summer Camille really remembers and it will always be associated with Adam's cancer, but at least part of it will be remembered by Camille has having so much fun with Cecile, 'big brudder' and the 'girl mom'.

Hurricane Gustav is battering the Mississippi and Louisiana coasts as I write. My in laws have all made it out of New Orleans and it appears that most of the inhabitants have evacuated. I heard today that 2 million people evacuated the coast. Apparently this is the largest evacuation in American history. Wow. Mary and Ben and their kids are in Nashville with Martha. And maybe that's the reason Martha stayed behind.


until next time....