Friday, September 28, 2007


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 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.

Tuesday, September 25, 2007

More Mason vids

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 (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.

Sunday, September 23, 2007

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.


Saturday, September 22, 2007

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.

Tuesday, September 18, 2007

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.

Friday, September 14, 2007

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.

Tuesday, September 11, 2007

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.

Monday, September 10, 2007

Mason's birthday at the DC United game

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

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

Saturday, September 08, 2007

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.

Tuesday, September 04, 2007

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.