A wonderful trip to Ecuador- Tributes to Mason

The park sign dedicated to Mason at Ambassador's Residence
Mateo and his award for being a great brother

Despite marathon delays getting there, it was a great trip. Very tough, lots of good memories but well worth the delays. Mateo got to have lunch with his buddies and recess Wednesday and Thursday and playdates in the afternoon both days. It was like he never left. They just jumped right in and played like it was he left for vacation. Danielle got to spend time with her friends and they surrounded her with lots of hugs and love. Kirk arrived on Thursday and was embraced by the Peace Corps office.

The ceremonies Friday were beautiful. The weather held out and we were outside. The park is so kid friendly- Mason would have loved the new park. Our friends Karen and Marty spoke, Kirk and Danielle said a few words and gave an award to Mateo for being a great brother, and then the Ambassador's husband, John Walsh spoke on behalf of the both of them and dedicated the park to Mason. We had a short prayer and then unveiled the sign. We will post the slide show when we return from Thanksgiving in NY.

Then we had lunch at Peace Corps. Cisco dedicated a plaque to Mason that had his photo and said "In loving memory of Mason Leach, Son of Peace Corps Ecuador" This plaque is in the reception area and Mason is next to the official photos of Bush and Cheney. It will hang there as long as there is a Peace Corps Ecaudor. They then had traditional lunch, a mariachi band serenading Kirk for his birthday and a soccer game with staff and Mateo.

Later that afternoon we had a dinner at our friend's Susan's house with all our Cotopaxi friends. We shared the slide show of Mason's life, shared laughs and cake for Kirk's birthday.

Many thanks to all our friends who organized everything, opened their homes, had playdates and helped us heal. It truly was healing for all of us.

Going to Ecuador this week

The Ambassador and her husband are dedicating the new park at her residence to Mason. Mateo named it " Mason's Superstar Park". We spent a lot of time there playing when we lived in Ecuador- playing tennis, going in the pool and playing in the park. We will go to Ecuador on Tuesday to spend time with friends. Mateo will get to see his buddies from Cotopaxi. He is very excited about seeing them. Peace Corps will also be doing something special in honor of Mason as well. Kirk will come down on Thursday for the ceremonies on Friday.

It will be bittersweet for us all. We had such a good life there. Mason will sorely be missed. We will grieve with our friends there. It will provide some closure, if there can be closure for this.

The story of his passing

I was watching a show the other day about death and dying - upbeat I know but it was really helpful. They talked about how telling the story of one's passing becomes like a prayer- a meditation.

Many people have not heard the whole story, some have. So here goes his story....

On Thursday the 11th we went for his MRI since he had symptoms- facial nerve loss, balance issues- so we were pretty sure the news was not good. Mason and I went to school in the morning. He was excited that he got to do the calendar for the first time and dance a bit with help in music. When we left, he wanted to call his Dad at work to let him know he did the calendar.

The MRI went fine. He woke up from anesthesia a bit worse than normal. We went upstairs to talk with the doctors and come up with the plan for the next steps. While we talked with the doctors, mason slept in the arms of one of his favorite nurses. The doctors told us the cancer had spread around his brain stem and his time was short a week or two at most.

On the way home I asked mason if he wanted to know what the MRI said- we usually talked about it on the way home from the doctor- and he said no not yet. We went home and had a good night with Mateo.

In bed that night I asked him again if he wanted to know about the MRI and
he said"Mommy I already know what it said."
I said, " You do?"
He said" I know it is all over"
I said"they will not let you be in pain"
He said,"I know Mommy"
I said" It okay to go to heaven if you are ready"
He said "I know Mommy"

And he kissed me and fell asleep.

The next day he woke badly- like he was in a nightmare. I had to wake him up to give him his medicine. He refused to take his medicine, yelling at me, to get away from him, he was dying, leave him alone. Francisca and I were trying to reason with him to take his meds. Hospice had left an emergency med pack and I called hospice to help me. Then they told me to give him the morphine and Haldol and see what happened. he calmed down and was a new man. he took his meds for me, we took a bath. He told me he was sorry for yelling at me and gave me a bunch of kisses. Kirk had come home in the meantime and he snuggled with his Dad on the couch and was really sweet. A bit high so it was funny to watch. Hospice came and checked on him and then he fell asleep until Mateo came home. He tried to stay awake when Mateo was home because Francisca had gotten the soccer stickers he had wanted and they were putting them in the books, but he was so tired and just laid his head on my shoulder and watched.

He then said he just need to sleep Mommy, thanks. And he never regained consciousness.

At about 2am , I woke up and he was seizing. We called hospice and they came over. She told us he was now actively dying. It could be a few hours or a day or two.

We stayed with him all day. Told funny stories, snuggled with him. Mateo brought him his stuff and talked to him. All day we just told him that it was okay to go. The mother and father in us had to tell him it was okay to go. Everyone came to say goodbye- to tell him what an awesome guy he was.

In the afternoon the hospice nurse told us he was close. The way a dying person breathes can be frightening if you had not been prepared. Fortunately we had been. Mateo had gone to the DC United game and came home. He told Mason the score and left the room.

We were all holding him. Kirk on one side, me on the other, Francisca by his feet and others in the room. The lights were low, we had candles, music playing. Mateo came in and held his hand. He took several breaths when we though it was the end. He passed away a few minutes later.

Kirk and I bathed him. I got in the tub with him like I always did. We put his favorite cream on him, francisca's Nivea, because he loved the smell. We wrapped him in his favorite blankets and laid him back on the bed and waited for hospice.

The gentleman from hospice came and declared him dead, called the organ donation team, and the funeral home. The funeral home came and swaddled him in sheets. he looked like a little baby in the nursery. I really wanted one of us to carry him out of the house. I carried him downstairs with Kirk's help. We placed him on the gurney where they strapped him in. His face looked at peace, almost back to the way before he was sick. We were all crying- even the funeral home guys were teary eyed.

Letting them take him was really hard.

And so it happened. His journey on this earth ended and the one in the heavens began.

Kirk will probably fill in more of his details later. But it is important to share that we think he decided he was ready and we all helped him on his journey. Our friends and family helped make his passage as peaceful and loving as it could have been.

Photo links to the memorial service in VA

Our friends were wonderful at sending great pictures.

http://web.mac.com/mcbalick1/iWeb/Site/07%20Mason%27s%20Celebration.html

http://web.mac.com/mcbalick1/iWeb/Site/Mason%27s%20Celebration%20Food%20%26%20Outside.html

A great quote....

"Friends are angels who lift us to our feet when our wings have trouble remembering to fly."

Thank you to all our friends and family for being there for us. We may be a bit frazzled and not get back to you right away, but we love you for your phone calls, e-mails and cards. They remind us to keep flying.

A wonderful celebration of Mason's life

On Saturday, we drove back to DC. In the afternoon, we had Mason's Celebration of Life service. We shared stories about Mason, read letters from Mom and Dad and Francisca, shared the slide show of his life, ate his favorite foods, filled in stars that told what we were going to do in honor of Mason's life and planted an oak tree.

The service was so beautiful and the kids brought so much to it. Sean and Ciara, friends of Mason, read two books. Mason's soccer coaches shared their thoughts about him, and our friends from overseas did as well.

It was a gorgeous day, sunny and crisp. With the leaves changing it was really beautiful. After the service, the kids played soccer and released a lot of energy. It was wonderful.

We went to the DC United game afterward with family and friends.

We will post the video from the service if we can, and some photos as well. The pictures really do tell a wonderful story of how much Mason was loved.

Mateo last night said to Mom "So many people have helped us" I said "yes that's right we are really lucky to have such good friends" He said- "yes we are."

Thank you to everyone who came, who helped, who organized, who spoke - so many of you.

Many people have asked how are we even able to stand and function. It is our friends and family who are holding us up with their love and support. We could not be functioning without all of you caring for us.

Saying Goodbye...

On Friday, we laid Mason's body to rest at West Point. It was a rainy cloudy day. Tears from heaven, I guess. I know we had prepared for this moment in our hearts and minds but living it is another story. So many people came to the service. It made the nightmare of this moment bearable in some way. People were holding us up in their love and support.

He was brought in the chapel by the West Point Honor Guard. A fitting tribute to a little boy who fought so hard to stay with us.

We shared a montage of photos of Mason's life. We had lovely readings and wonderful music. Mason and Mateo's cousins sat on either side of Mateo and held him through the service. We will post the program for those who could not be with us and we will try to share the montage, but the file was so huge iI am not sure we can do it.

As we began to lay flowers at the gravesite, there was a thunder clap and the rain started to really pour down. Our sorrow was reflected in the weather. But I also believe he let us know he was up there making some noise! It was comforting to know he was laid to rest with Kirk's dad and at West Point. It is such a honorable place full of tradition, strength and valor. The right place for Mason to be laid to rest.

Thank you for so many coming to share our grief and love us and hug us when there were no words.

The journey begins

We brought Mason's body to New York today. We decided to take him ourselves- as Kirk appropriately said- it is our son and we will take him the whole way on his journey, not a stranger. We all went to the funeral home together and saw him again. Mateo was with us and he wanted the soccer shirts to go in with Mason. He helped guide Mason's casket to the car- and helped lift it in. We had originally planned for Mateo to go in the other car but he emphatically wanted to come with us. He put his ear to the casket and said he heard Mason trying to get out. On the trip, he laid his hand on top of the casket that was next to him and fell asleep lying next to his brother. It is these moments that bring us to our knees. But we have let Mateo show us his way- and his way is a beautiful sweet, loving one for his brother. He gets angry once in awhile and has some insights that are a bit left field, but we validate them and help him through this as best we can.

Again, I think we learn alot from the kids and their example of just being in the moment and sharing and living it to the fullest. We are preparing for the service tomm. I think it will the hardest for us and we will lay to rest his physical body. So final- the end of his body's journey.

Thank you to all who are helping with the service Saturday. We are ready to celebrate the good times and his sweet laughter. This is the right way to do this for us.

Some help for the service needed Saturday....

The wonderful friends who are organizing the service for us have asked friends and family to provide little stories about Mason to share during the service. If you want to share something, please e-mail mybigbrain@yahoo.com Also I am sure they could use any extra hands.

Everyone has been so wonderful and it has really helped us to get all your e-mails and hugs to get through this tough first week without Mason. It may take us awhile to respond but we do appreciate it.

The viewing

Thanks to the many, many folks who came to see Mason for the last time. He looked wonderful, at peace. Your support is overwhelming. Folks from as far as Vermont and Florida, and some folks very special to Kirk who he hadn't seen for 20 years.

Thanks especially to the little ones for making such beautiful drawings for Mason. We are glad all his little friends had a chance to say goodbye.

Remembrances of Mason

Mason's Kindergarden teacher, David Henderson, has set up a site where folks can write their remembrances of Mason: http://masonleachinourlives.blogspot.com/

If you are so inclined, feel free to leave your memories and thoughts about Mason there.

More info re Saturday's Celebration of Mason's Life

Please dress casually, and if you have a soccer jersey (of any kind), please wear it. If you don't have a soccer jersey, please wear a sports jersey if you have one, to remember Mason's love for sports in general. Thanks.

More info re West Point service on Friday

As mentioned, the service at West Point is scheduled for 10 AM. There are two ways to enter West Point:

1. We will be carrying Mason in our vehicle, with Military Police escort, starting from the parking lot of Hogan's Funeral Home at 135 Main Street, Highland Falls, at 9:30. You are welcome to follow. Have picture ID ready.

2. If you choose to enter West Point on your own, just be sure to have picture ID, and tell them you are going to a funeral at West Point Cemetery. You won't have any problem, just be sure to leave enough time. You can ask the guards for directions.

There will be a reception after the service at the West Point Club, in the Grand Ballroom. Please join us.

Today's Washington Post

Mason's death notice ran in today's Washington Post. In the sports section, there was an article about former UVA basketball star re-signing with the Washington Wizards. The headline was: Mason's Heart Is Where His Home Is

DC United raffle results

Clare Kelly of Children's National Medical Center won the DC United tickets, and other DC United items signed by Bobby Boswell. Clare has decided to offer the items she won to a family with soccer-loving children undergoing treatment at the hospital. Bravo to Clare!

Many thanks to our friends who put the raffle together and the many, many folks who bought tickets. Once again, your support is overwhelming!

Services for Mason are set

ALL are welcome to any of these events.

Receiving of Friends and Viewing
(please note: children are very welcome, but it will likely be an open casket. We just wanted to let you know in case anyone has any concerns about that)
Murphy Funeral Home
4510 Wilson Blvd. (Near N. Glebe)
Arlington, VA
6-8 PM on Tuesday, October 16th

Funeral Service and Burial
Old Cadet Chapel
United States Military Academy
West Point, NY
10:00 AM
Friday, October 19th

Celebration of Mason's Life
Key School Auditorium
2300 Key Boulevard
Arlington, VA
3:30 PM
Saturday, October 20th

Some info re the first service this week

Here is the death notice that will be in the newspaper. There is information about the viewing on Tuesday at Murphy Funeral Home.

Mason R. Leach
On Saturday, October 13th, 2007 at his residence in Arlington , VA , after a long, courageous battle with brain cancer. Cherished son of Danielle and Kirk Leach. Loving brother of Mateo Leach. Survived by a host of other relatives, friends, and his “segunda mama”, Francisca. “Hero” to all who knew him. In his short five-year life he lived in four countries: Bolivia , Honduras , Ecuador , and the United States. He spoke Spanish fluently, and loved to play soccer, sing, and paint. The family will receive friends at Murphy Funeral Home, 4510 Wilson Blvd. , Arlington from 6-8 PM on Tuesday, October 16th. Later in the week, Mason will be buried with his grandfather at West Point Cemetery, West Point, NY , and there will be a celebration of his life at a site to be determined in Arlington . More information about these two services will be at www.masonleach.blogspot.com as it becomes available. In lieu of flowers, please help Mason do something special for the pediatric oncology floor at Children’s Hospital by donating to: Mason Leach’s Super Star Fund, c/o Children’s National Medical Center, attn: Volunteer and Consumer Support Services, 111 Michigan Avenue NW, Washington, DC 20010.

Mason passed

Mason passed away tonight, very peacefully, a little before 11PM, surrounded by family, ending his 15 month battle with brain cancer. He was visited all day long by a stready stream of friends and family who loved him. We think he waited for Mateo to get home from the DC United game, as he had lasted longer than expected, and then passed shortly after Mateo got home. He was strong as a rock to the end - anyone who knew him would not be surprised.

Earlier in the day, Mateo packed all of Mason's soccer jerseys, socks, some cleats, trophies, soccer stickers and a ball, for Mason's journey. He told Mason that he was the "best brother in the world."

Two waiting children will be the recipients of Mason's corneas and heart valves, so he will continue to live on, in a way, in this world.

There will be two services for Mason. He will be buried, most likely in the middle of this week, along with Kirk's father at the West Point Cemetery at the United State Military Academy. We expect to have a memorial service in Arlington on Friday or Saturday. Mason touched so many lives, and so many touched his life. We look forward to celebrating his life with friends and family. All are welcome, and we will send along details of time, place and day shortly in an email as well as post them here. Thanks to all the medical personnel who did their best to save Mason. Thank you everyone for your thoughts, prayers, and support during the last 15 months. They were extremely important to us. We love you all.

An Irish Blessing

Deep Peace of the Running Wave to You
Deep Peace of the Flowing Air to You
Deep Peace of the Quiet Earth to You
Deep Peace of the Shining Stars to You
Deep Peace of the Gentle Night to You

May The Sun, Moon and Stars Pour Their Healing Light onto You
May there be Deep Peace from the Light of the World to You.

Death Is Nothing
Henry Scott Holland

Death is nothing at all,
I have only slipped away into the next room.
Whatever we were to each, that we are still.
Call me by my old familiar name.
Speak to me in the easy way which you always used.
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me. Pray for me.
Let my name be the household word it always was.Let it be spoken without effort.
Life means all that it ever meant.It is the same as it ever was;there is absolutely unbroken continuity.Why should I be out of your mind because I am out of your sight?
I am but waiting for you, for an interval,
somewhere very near just around the corner...All is well. Nothing is past, nothing is lost.
One brief moment and all will be as it was before,
only better, infinitely happier
and forever we will be one together.

Henry Scott Holland (1847-1918)

Early Saturday morning

Mason has begun the process of passing from this world. He is not in pain, and can understand at least some of what we say to him. The hospice nurse is here to help us make sure he is not in any pain. She estimates that this process will take 1 to 48 hours. We are telling him funny stories about his life.

MRI

As we expected, given Mason's symptoms, the MRI results were bad. Dr. Rood (who has been incredible) and his team indicated that the best guess is that Mason has about 2-3 weeks to live. We will make the best of that time, and he will not be in any pain. The tumor has grown around his brain stem and the spots on his spine and tumor at the base of the spine have grown as well. We reviewed some of what may happen and discussed some options to keep him comfortable and at home until he passes if we can. We are working with hospice as well.

As you can imagine we are reeling from the news. We ask that you hold us in your hearts as we pass through this time and pray for a quiet, peaceful transition for Mason into the next phase of his existence.

We will post sometime tomm how people can help as we make plans and get ready for the next few weeks.

Declining

We are sad to let you know that Mason has declined markedly over the last week, and particularly over the past couple days. He is sleeping more and more (12-13 hours a night), has lost a great deal of his balance, and is slowly losing his ability to focus his eyes and chew food. Through it all, he is still a trooper. As his soccer coach wrote to us tonight, "Mason is the strongest person I have ever had the honor and privilege of knowing." We couldn't agree more.

As we put together a slideshow of Mason's life tonight, we realized that 99% of the pictures on the blog are of Mason when he has been sick. We were getting a little tired of that, so here are some photos of him in happier, healthier days:

Questions of faith

This was posted on the medulloblastoma listserve

http://www.religioustolerance.org/reac_ter3.htm

I found it really helpful to process my questions about God and the nature of evil and bad things happening to people and the world. Any way to look at it- it still does not make sense that Mason has to suffer- but this helps process it in some way for me - a lapsed doubtful Catholic raised girl.

Danielle

Some photos and video from the RV trip this weekend

Mason hanging in the RV

Hiking in style


At Six Flags with Mateo

ColorWonder - his favorite coloring

With his cousin Anna

Despite the challenges of cancer, still fighting to win!

Are we coming to the end of the road?

We have begun to see some of the changes they warned us about. His pupils are uneven, his balance is off, he is weakening. The pain seems to be under control. He is back on the chemo for now, but it does not appear to be having any effect on his cancer in a positive way that we can tell outwardly. We will have an MRI later this week. We both cried a bit this weekend watching him try to play baseball and falling over after a big swing. We rage at the heavens above wondering what kind of universe exists in which a little boy can lose so much in his little lifetime. We try to stay positive and hope, but the changes are coming very fast now. Even being away for four days with him we saw a drop in his strength and balance. One side of his face seems to have dropped,and one eye cannot open as much. We can only hope that we can keep him comfortable and playing and loving him as much as we can while he is still with us. Every hour seems precious at the moment. We check to see if he is breathing at night like we did when he was firstborn. There is a French poem that my dad had read at my mother's funeral that said "it is raining in my heart" Today our hearts are raining for our little guy and his brother. No child needs to learn life is unfair at such an early age. That things don't always work out, that all the prayers in the world may not save someone from suffering and dying. No child needs to learn that.

Hospice comes tomm to talk with us more and establish more services with us and him. We will utilize all they have to help this transition be as peaceful and loving as we can.

We continue to ask for prayers and a miracle.

The raffle continues for the Fund

Our friends are raffling off DC United Tickets to raise money for the Celebration of Life Fund.DC United was very generous in donating 4 ticktes to the OCt 20 game and they will be giving some other item to the winner.

If you would like more information or want to help, please call Laurel Hockey at (703) 516-4458 or Caitlin Palacios at (703) 351-9239. You may also email Caitlin Palacios at mailto:palaciosac@aol.com (please put Mason Robert Leach on the subject line).

A special thank you to our friends as they have really put a lot of time and effort in making this happen.

We are back on chemo

The platelet counts are back and he will continue with the SAHA at a reduced dose. We will have to hope it does not drop his platelets at this dose. He will be off the trial if that happens. So we bite our nails and wait.

He continues to be on pain meds for his legs 24hrs a day. But he went to school twice this week and had a good time. He has loved the e-cards everyone has bee sending. So thanks for making him smile.

He has also discovered that the Java Shack- a local coffee house has great pumpkin muffins and good coffee in big cups that he likes to share with Mom. It helps when he is tired to perk him up a bit. He said to me today" I know why you drink this stuff Mommy, it wakes you up!"

We will go on our RV trip this weekend and go to Six Flags. Kirk's sister and her kids will come down and join us.

On the sibling side- Mateo could use some e-cards too. He has been a bit down lately and could use some cheering up. I think he is realizing how Mason is declining as he does not ask him to play soccer in the backyard as much and is cautious arond him for the most part. He watches everything and processes it so we have to be careful what we say in any conversations around him.

Both boys are excited for Halloween. We will decorate this weekend. They got these horrible masks that they call screaming bleeding that have blood that pours down the face. They have begged me to get them since they saw them in CVS a couple of weeks ago. I have been trying to convince them to be something alittle less horrible, but to no avail. Some battles are just too silly to fight.

Mason scores a goal

Video of Mason scoring a goal this past Saturday.

A fun time

Riding in style with his buds

This weekend we went to the DC United game in the limo and went to a race for Childhood Brain Tumor Foundation on Sunday.He loved the limo and having soda in the car with his friends. He has learned to party in style early. We will put up some video of him later this week.

He also scored a goal at his soccer game on Saturday. He proceeded to try and take his shirt off to celebrate in true soccer style. We will put up some video of his celebration.

On Sunday we did the race. He fell down at the start of the race but ran it again after we cleaned up his knee. He was determined to run on his own and win. A true testament to his personality!Thank you to all our friends who came out to support us.

Update

Mason continues to be off the clinical trial as his counts have not increased enough. the doctors said it usually takes about a week for platelets to recover. He has two weeks to get his platelets up or he will be off the clinical trial for SAHA. It they do reach 100,000, he will start the reduced dose.

We had meetings with hospice this week. It was a sad milestone to reach, but we are not giving up hope. Hospice can come in and just reduce the time he spends at the hospital for services, so he can spend more time at home and have fun with us and his friends. They will also do art therapy with him to alleviate some of his stress and depression about what is happening to his body.

He has been having more leg pain. They started him on a new medicine and he is on some pain meds 24hrs a day now. Hopefully this new medication which is actually used for seizures, will reduce the leg pain. He has also had some intermittent double vision, which is not a good sign.

On a brighter note we will take Mason in a limousine- per his request- to the DC United game tomm night. We will tailgate with friends and try to enjoy the luxury of it all. It is the same limo company that Make a Wish sent for his Disney trip, so he is psyched.

We are also planning if all remains stable to go in a RV camping on Columbus Day weekend with Kirk's sister in a state park near Baltimore.

He has enjoyed his e-cards so keep them coming. We got the webcam set up in his class. Thanks to David and Wendy for working so hard to make that happen. He had fun and we will use it when he is not able to go to school to connect with his friends. Thanks to HopeCam.org for the computers and donation of the webcams. Anyway we can connect him into friends is always positive.

Keep praying. If love and prayers could heal him, he would have been healed by now a million times over.

More Mason vids

http://www.veoh.com/videoDetails.html?v=v1208859HDPnmPJx
http://www.veoh.com/videoDetails.html?v=v12096758PPeqHsK

You have to cut and paste these into your browser. Not sure why they aren't appearing as links.

Raffle for Celebration of Life Fund

Our friends are raffling off DC United Tickets to raise money for the Celebration of Life Fund. If you would like more information or want to help, please call Laurel Hockey at (703) 516-4458 or Caitlin Palacios at (703) 351-9239. You may also email Caitlin Palacios at mailto:palaciosac@aol.com (please put Mason Robert Leach on the subject line).

Mason videos

Here are a couple of videos of Mason's birthday parties. I will have a couple of more up later today of him playing soccer and driving his new Jeep. His platelet counts are very low right now, so he is going off the chemo for a few days at least. While it is not great that his platelets are low, it also means that the drugs are taking an effect, and hopefully beating back the cancer. We'll see.

http://www.veoh.com/videos/v12003999nbkhWwY
http://www.veoh.com/videos/v1200645bMFEXAMG

What you can do...

A lot of people have asked what they can do at a time like this so here are some things we thought of....

• Keep praying- all that positive energy is felt by us and by him.
• Keep giving us hugs when you see us- the power of a good hug always feel great when there are no words to say. Especially to Mateo and Mason.
• Mason has been kinda grouchy from the meds - when you see him- he may not be his friendly self. Just put your hand on him- say hi- tell him you think he is a great guy. He may not give you a response but it can only help.
• Send him e-cards. He loves funny ones with music.
• Keep telling us about your lives. Life goes on and we want to be included and hear about you. The good and the bad- We care about how our friends are doing too!
• Keep including us in social things. As much as we can - we will try and be a part of the normal stuff. Ask Mason and Mateo for playdates-the more they feel a part of everything - the better.
• Remember we appreciate you all and are so grateful for your love and support.

Thanks.

Reunited and it feels so good!

Our dog came back from Ecuador after being in foster care for more than a year. he was abit scared at first, but now Buddy is hanging out and doing well. The boys are really happy.

Mason's birthday

A great day. He woke up to getting a ride on jeep and many presents from us. Later in the day we had friends over. The pictures say it all.

An update on the Celebration of Life Fund

We just wanted to share with you some of the things the fund has allowed to do in recent months since it began. Danielle was able to work part time in the month of August. The fund covered some of the financial deficit this created. On a brighter note, Danielle took the boys to the pool and other outings. We also went to the county fair with Francisca and Monica at the end of August. We also used the fund to take Mason to the DC United game for his birthday with his friends.

We will continue to use this money wisely and use it to provide flexibility as the need to take more time off care for Mason this month begins.

We appreciate everyone who has given support to us both emotionally and financially. We cannot express how much this has helped us lately and has given us some peace of mind as we face the coming months in this battle.

With all our gratitude,
Danielle and Kirk

The next round begins

We started the SAHA clinical trial on Thursday. Mason got a bit upset before we left for the hospital as he thought that he was going to get the chemo that really made him throw up. We assured him this was not like those times and that he would only have to take some medicine and hang out all day get blood drawn from his arm. Not thrilled about that but okay with it. The IV took two sticks which he wasn't happy about. But he cooperated all day. It was the first time he had been hooked up to an IV in months. We saw alot of the nurses from the inpatient side. It was bittersweet since so many said he looked wonderful and great- yet we had to tell them it was another recurrence that brought us there. So Mom and Mason hung out at the hospital from 8am to 7pm. A long long day.

He will take two pills a day for 28 days. He will have an MRI to check everything on the 11th. Any growth and he will be taken off the trial. They say we will see neurological changes if he progresses any more. The spots on his cerebullum- if they grow- could affect his facial expression, hearing and sight. We hope this trial works.

Hoping for a miracle....

Well Mason cannot seem to get a break. We had an MRI yesterday and there is growth of the cancer already even from a few weeks ago. It is sad and frustrating that this will not let him go.
His oncology team at CNMC has been wonderful. We spent the last week looking at options and they have spent alot of time explaining everything and the clinical trials that may or may not work for him and why. It really helped us process our next steps for Mason. A special thank you to Dr. Rood, Debbie Lafond and Elena Padua and the whole team.

Our next steps:
We won't go through the process of how we decided what to do, let's just say there are not many choices for him now. So we will go on the SAHA study. SAHA seems to function as a tumor suppression agent. SAHA may also stop the growth of cancer cells by blocking some of the enzymes needed for cell growth and by blocking blood flow to the cancer. This is the one that worked in mice and is now in Phase 1 clinical trial. Phase 1 clinical trials are long shots.

Phase I trials are the first step in testing a new approach in people. In these studies, researchers evaluate what dose is safe, how a new agent should be given (by mouth, injected into a vein, or injected into the muscle), and how often. Researchers watch closely for any harmful side effects. Phase I trials usually enroll a small number of patients and take place at only a few locations. The dose of the new therapy or technique is increased a little at a time. The highest dose with an acceptable level of side effects is determined to be appropriate for further testing.

He will start on Thursday. All we can do is hope for a miracle that he will beat the odds. If Mason's spirit and determination has anything to do with it- he just might.

In the meantime, we are getting ready for family to come down this weekend for his birthday bash. We are excited. We got him a ride on jeep that he can drive around. It has two seats for him and Mateo. We will post the photos and video Sunday.

He also has made some requests that we might just do. He wants to go camping in an RV and take another limo ride like the one he did going to Disney with Make a Wish. Kirk and I are making plans to make this happen.

All smiles and positive thoughts for Mason.

Mason's birthday at the DC United game

Here are the videos from Mason's birthday celebration at the DC United game:

http://www.youtube.com/watch?v=1YxGZw4ktXY
http://www.youtube.com/watch?v=QIwCNYrpTz8

An Early Birthday Celebration

Three handsome dudes

Today we went out and had a party at the DC United Game for Mason's birthday. The team offers a birthday package that allows the birthday child to go on the field at halftime and get a ball from players. He had a great time. Lots of smiles. We are happy to see him so happy.
Mason making his cupcakes

Tailgating with his buds

On the field

Saying hi to Bobby Boswell- a great DC United Player

Some more news....

Well his spinal tap on Thursday was positive for cancer cells. Not surprising but disappointing to hear this beast is still active in our little boy. We sent off the films for second opinions to St. Jude and MSKCC last week and should hear next week. We learned Thursday that the clinical trial of SAHA/Retinoic Acid may be closed for him, but we are exploring options to get him the drugs. We also will meet with the team on Tuesday to discuss other trials and combinations of drugs to explore as we wait t0 see if the trial will open.

It is a frustrating and sad time for us. On a positive note, he had a great week at school. He had a lot of fun. He continues to just be a little tired and have bathroom problems, but otherwise is really fine. The prognosis does not equal how he is living. For that, we are extremely grateful.

Tomorrow, we are taking a bunch of his buddies to the DC United game for his pre-birthday celebration. He is very excited and had a great time at the party store picking out supplies with Francisca and I. We will post a bunch of pictures by Monday.

I saw a great quote the other day that said"I cannot not do something today because of what may or may not happen tomorrow." We just have to keep our sweet, vibrant little boy as happy and comfortable as we can today. Tomorrow will bring what it will bring. We have to keep that in mind as these days pass.

First Day of School

On his way to school with Uncle Matt and Mateo

He made it to Kinder!! He will be in Montessori Kinder this year with his same teacher. It works best when how he feels varies so much. He made it through half the day and took a big nap in the afternoon.

MRI Results

I know many of you have been anxiously awaiting news from yesterday. Sorry for the delay but the doctors were also reviewing things and we did not get the call until later in the day.

SO here is the news:
The spots on his brain and the one they had been concerned about last time are stable- no change. The spine in the thoracic area- appeasr to be slightly larger - only by 1mm so it is negligible. It may just be from a different angle.

The tumor at the base of the spine appears to be the same. There was some concern that it had thickened and the debate is still out- but it appears to be about the same. It took up more dye this time and more evenly. That is a bit concerning. There was some debate about dye uptake on the spinal cord but consensus seems to be that it is just a natural function of dye uptake.

So what is the plan? The plan is we will do a spinal tap next week to see if there is disease in the spinal fluid. We will change his meds to the SAHA study- the docs are working on the logistics of this. We can always go back the Temodar/Tarceeva combo if that fails afterward since it kept him from progressing too much.

His neuro exam the other day illustrates he has decline in his nerve responses in his sacral area so we are seeing clincial evidence of something. We will continue to give him the higher dose of steroids and give him enemas if he cannot go to the bathroom for more than two days. We will need to catheterize him this week to test how well he is emptying his bladder after he has gone to the bathroom.

We will send his films to NY, NIH and St. Jude's to see what they think. We will do another MRI in two weeks so he will have the prerequistes for the SAHA study.

SO that is it for now. We'll update as we have more information.

On a lighter note

Mason showing off his new DC United jersey
They love the soccer ball logo on the side

Steel Magnolias moment

For anyone who had to be an advocate for someone or had to respond in times of stress you'll appreciate the reference.

The scene:
Friday, Mason had a friend over and starting yelling about being in pain. Fast forward and he is writhing in pain b/c he cannot pee. We call the doc and catheterize him to relieve pain. He falls asleep from crying so much.

We wound up in the ER to test his urine later that night. He had to lie down on the seat b/c he was in pain while Mom was on the phone with her friend Mary trying to strategize what to advocate at the hospital for him. We get there he is still not great but the medicine we gave him at home begins to kick in and the we get a urine sample. Mason informs the nurse that only his mom will catheterize him, not her. Very politely and clearly.

ER doc and mom exchange glances knowing what all this urine retention, possible infection could mean. Very nice and helpful. Shift change and I get a new young nurse. I go and ask about the urine test results, She comes back in and says"my! he looks just fine. Mom you should NOT jump to conclusions on what this means. etc etc etc BLAH BLAH BLAH. "

Mom tries to remain polite and calm and quietly says- "I appreciate that and yes he looks fine, but you have no idea." Meanwhile in my head I am screaming at her- FINE you think this is fine? Is it fine that this sweet little boy may have another recurrence? Is it fine that he only wants to be at his brother's soccer game tonight instead of sitting in an ER bay? Is it fine that he was writhing in pain calling for his daddy and mommy to help him only two hours ago? And many other profanities in my head to respond to her comment.

But Mommy kept it together smiled and made sure we got out of there as soon as we could. The ER doctor gave me a big hug before we left and just met my eyes and said Hang in there.

Just reminded me of that scene in Steel Magnolias when she loses it in the end with her friends. Not sure why but it did.

A funny story and a sad story

First the funny one:
We have been giving Mason some massages to help him relax and wind down at night. After getting his back rub, he turned over put his hands behind his head and said, "This is the life! We should do this every night!"

Now the sad one:
Last night we were laying in bed and Mason asked me what heaven was like. He wanted to know if there were any scary bad guys there, what do you eat, who is there etc etc. Boy that was a tough conversation. But I kept it together and told him what an awesome place it is, that Poppa and my Mommy were there, my brother and so many people from our family that take care of each other. Then I told him he probably wasn't going to go there for a long time, that he is stuck with his mommy and daddy here, cracked a few fart and gross jokes and changed the subject. My heart is still recovering from that one.

The roller coaster ride continues

Sorry it has been a while since the last post. Mason had the fever after vacation and some vomiting, but we started the chemo anyway and he finished last night. He has not been eating or drinking very well, so we struggle a bit with energy etc. He passed on camp this week but will go next week with Mateo if he is up to it.

He has an appointment with the docs on Thursday to check in and we will see what is happening. Meanwhile, he went to the DC United/LA Galaxy Game with help from the fund, gone school shopping with his brother and has been helping Francisca clean around the house. We will go to the water park later this week and see friends this weekend if all goes okay.

So this crazy life continues......

Medical Update

We went to the hospital last night for bloodwork to rule out infection and a urinalysis to check for a bladder infection. All appears to be clear so far. The doctors checked him today and his neuro exam was good. He got sick at the clinic so it appears it may be viral for the moment. They will recheck him on Thursday to be sure all is well. If he continues to have headaches and vomiting they will do a CAT scan Thursday. Never a dull moment!

Celebration of Life Fund update

Folks, we have been overwhelmed by the response to the Celebration of Life Fund. Thanks again to our Arlington friends Laurel, Caitlin, Cynthia and others, for starting the fund. One of the amazing things is that, besides the wonderful generosity of family and friends (new and old), we are getting cards and notes from people who don't even know us (friends of friends of friends), but are touched by Mason's story and want to help in some way.

If you sent a note or card to Laurel, you will receive a card from Mason. If you sent a check to the bank, sorry we don't know if there is any way we can find out who donated in that case.

We wanted to share with you the story we received yesterday of about the daughters of our friends Jeff and Jennifer Muller (friends of Kirk from Peace Corps) and their church. These amazing young girls, Hallie, Annie and Bryn, whom we had the pleasure of seeing when we visited the Mullers in Florida in May on the Disney World Make-A-Wish trip, wanted to do something to help Mason. Well, their Mom's email to us, that we received yesterday, tells it best:

"Hi Kirk, Danielle, Mateo, Mason and Francisca-

We had a very exciting morning this morning. When Mason's Celebration of Life Fund was established we told the girls about it and they wanted to do something to contribute. They decided on a bake sale. We asked our pastor if we could hold one at church after the service one morning. He was concerned about how much money we would make since it's summer (we have lots of snowbirds as members plus a lot of folks on vacation) but we decided it was making a contribution, not the amount of the contribution. So...

We chose Aug.5, made posters and placed it in the weekly bulletin to advertise, baked all day yesterday and made $1,441.00! We are very lucky to have found a church that fits us and today proved what a wonderful bunch of people we spend time with- I had to empty the donation jar numerous times! (We had $260 before we had even baked a cookie- people who knew they would be out of town and wanted to be sure to contribute!) Your family has touched a lot of people who besides buying baked goods :), will keep you all in their thoughts and prayers.

Looks like you all are having a wonderful time on vacation. Mason, you look like a different boy than the one we met over Memorial Day weekend- doesn't look like much slows you down these days! Hope the back pain has subsided and that it is just the result of lots of fun. Hallie and Annie went to soccer camp last week and really liked it but don't think they are ready to keep up with you yet Mateo!

The girls go back to school on the 21st so our summer is winding down- we've got plans this week for school supply shopping- can't believe it is here already!

Take good care-
Love,
Jeff, Jen, Hallie, Annie and Bryn"

Still enjoying vacation but some new pain

We are still having a good time fishing and swimming. Mason has been having some back pain in the spot where the tumor is. He is not constipated so it is a bit concerning. We got him some stronger pain meds today in the hopes that it will alleviate the problem. But it will need further investigation when we return to DC on Monday. Just pray it is not growing and it is just that he has been so active this week. We wait and worry.

Enjoying vacation

Mason and the family have been enjoying vacation with loved ones in Westchester and the Adirondacks...lots of fishing, swimming, tubing and other outdoor adventures.

Mason swimming: http://www.youtube.com/watch?v=Z50aNgySXvs

Uncle Matt is in town!!!!

And the boys have not stopped laughing since he got here. He brings such positive energy with him. The boys have a great time and he is very patient with them. A true gift for them.

A great photo

Mason with Joan- another strong cancer survivor

photo courtesy of Duane Stork

A busy week or so...

Mason has had a good week and half. He began his chemo of Temodar and Tarceeva. He has been handling it fine. Last week he came to Danielle's conference for work where he met many cancer patients and survivors. I will post a great photo of him and woman with no hair that is priceless. He was really fascinated by the women with no hair and said they looked like boys like him. He also double checked with Danielle that many of those women that looked fine had cancer and were doing fine. A powerful message for him indeed.

He has been going to camp this week and he has really like it so far. He says it is like school.

He will continue for one more round of Temodar and another 28 day cycle of Tarceeva after he completes this round. Then we will do pictures. But he is feeling pretty well and having fun. It is a joy to watch him just be a regular kid.

Good news!

We had the MRI this morning. There is no new cancer, and the one tumor he already had, at the base of the spine, has shrunk by 20%. So, we finally got some good news. Thanks to all for your prayers and positive thoughts!

A time for reflection........

A year ago today we flew to NY to save Mason's life. It is hard to believe it has been one year since his diagnosis. So much change, so much has happened. We need to continue to focus upon the positive. Mason is a happy little boy, walking, talking and enjoying his life. We have so many good friends and family that have supported us through this all. Do we get sad, mad, and frustrated? Of course we do. But life must continue and we do our best to give our boys and our family as normal a life as possible for a long as we can. Thank you to everyone. Your phone calls, e-mails, prayers, visits, meals, gifts etc etc make all the difference. You have no idea how loved we feel and how important that has been to our family.

Mason's MRI is tomm in the morning. We'll keep you posted.

The Celebration of Life Fund created for Mason

Celebration of Life Fund
Mason Robert Leach

Dear friends and family of Kirk, Danielle, Mateo, and Mason Leach:

A wonderful saying greets you in the foyer of the Leach home:

Follow your heart wherever it takes you and be happy. Life is brief and very fragile and only loaned to us for awhile. Wake up every morning with the thought that something wonderful is about to happen.

With these thoughts in mind, a community of friends has created what we call the Celebration of Life Fund, with the hope of giving Mason and his family more chances to celebrate moments in their lives together as Mason continues his courageous fight against brain cancer. Specifically, our hope is to provide Danielle and Kirk with some financial peace of mind so that money will not be among their many worries during this challenging time. We also hope that the Celebration of Life Fund will allow Danielle and Kirk to take more time off from work so they can be with Mason, Mateo and each other more every day. We know that this extra time will give Kirk and Danielle more chances to enjoy Mason’s laughter, to be with Mason when he is feeling both good and bad, to relish in Mason’s angelic voice and chatter, to take pleasure in the special bond between Mason and Mateo, and to comfort Mateo when he has trouble understanding what is happening to his brother.

The Celebration of Life Fund has been created with the permission of Kirk and Danielle, who understand its purpose and who are grateful for the opportunities that the Fund will provide to their family. On behalf of Kirk and Danielle, we thank you for your love and support. We also personally thank each of you for joining with us to make a meaningful difference for our friends.

We encourage you to contribute in any way you can. Any contribution, whether it is big or small, on a one-time basis, monthly, or whenever you feel like it, will help their Fund grow. We will keep you updated each month on the Celebration of Life Fund and its growth. Please see the attached Q&A for how to contribute.*

Laurel Hockey, Caitlin Palacios, and Cynthia Perera


* We are attaching a list of questions that friends and family might have about the Celebration of Life Fund and answers to those questions.
Q: How do I donate?
You may send a check to Citibank, 1010 North Glebe Street, Arlington, VA 22201, with a note saying "please deposit to account of Danielle D. Leach ACF Mason Robert Leach, #6739772509". If you happen to have a Citibank account, you can transfer funds into the account for free from any Citibank ATM. You may also send a check or deliver cash to Laurel Hockey at 1815 North Adams Street, Arlington, Virginia 22201 and she will make deposits into the Fund at Citibank. Please email Caitlin Palacios at mailto:palaciosac@aol.com (please put Mason Robert Leach on the subject line) if you need furhter assistance.

Q: To whom should my check be written?
Please make your checks payable to Mason Robert Leach.

Q: Is the Celebration of Life Fund the official name?
We have chosen to call this account the Celebration of Life Fund. However, the nature of the account requires a different legal name. The legal name on the account is Danielle D. Leach ACF Mason Robert Leach.

Q: Is it tax deductible?
Unfortunately it is not tax deductible. The process to become a non-profit entity is quite long and involved and not applicable under current guidelines in this case.

Q: What is the min/max I can give?
There is no minimum amount but no person can give more than $11,000 ($22,000 per couple) gift in one calendar year for tax reasons.

Q: Will the family be notified I gave?
We will keep track of a list of donations that come in through the mail. If you donate via wire transfer, we will be notified. If you make a direct deposit to the account, only the amount would be reflected. You may donate anonymously if you so wish. We want to make it as easy as possible for friends to donate so please let us know how we can best accommodate you if these options do not.

Q: What will this money be used for?
The Leach family will have discretion regarding the use of the Fund for their needs. The objective of the Fund is to provide funds for the family to alleviate their financial burden. This will allow both parents to take leaves of absence as needed and still be able to pay their bills. We also hope that they will use some of the funds to spend time together and do fun things as a family when Mason is feeling well. For those of you that don't know Danielle and Kirk personally, we can assure you that they will use the money with care and responsibly.

Q: What happens to any money remaining in the Fund if Mason passes away?
The family has discussed this and will support the Children’s hospital and other charities that have helped them during Mason’s illness in the event he does not survive and there is money still in the account.

Q: Who can I call with questions?
You may call Laurel Hockey at (703) 516-4458 or Caitlin Palacios at (703) 351-9239 if you have any questions. You may also email Caitlin Palacios at mailto:palaciosac@aol.com (please put Mason Robert Leach on the subject line).

Q: Where can I go to find out more about Mason?
Danielle and Kirk have a wonderful website that you can visit. Please visit it at http://masonleach.blogspot.com/

Some photos from last week.