Tuesday, December 26, 2006

Be more like a cup of coffee

My dad sent me this and I really loved this in light of all that has happened this year.

May you never look at a cup of coffee the same way again!

A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil, without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her daughter, she asked, "Tell me what you see."

"Carrots, eggs, and coffee," she replied.

Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its richness and savored its aroma.

The daughter then asked, "What does it mean, mother?"

Her mother explained that each of these objects had faced the same adversity - boiling water. Each reacted differently.

The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak.

The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened.

The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

"Which are you?" she asked her daughter. "When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?"

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get even better and change the situation around you.

When the hour is the darkest and trials are their greatest, do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg or a coffee bean?

May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.

The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes along their way. The brightest future will always be based on a forgotten past; you can't go forward in life until you let go of your past failures and heartaches.

When you were born, you were crying and everyone around you was smiling. Live your life so at the end, you're the one who is smiling and everyone around you is crying.

You might want to send this message to those people who mean something to you;to those who have touched your life in one way or another; to those who make you smile when you really need it; to those who make you see the brighter side of things when you are really down; to those whose friendships you appreciate; to those who are so meaningful in your life. May we all be COFFEE!

Thursday, December 21, 2006

The spinal fluid is clean!!!!

No tumor cells in the spinal fluid!!!!

Clean MRI

We met with the doctors yesterday. Mason's MRI came back clean. Optimal results, the best we could have hoped for.

Mason had a lumber puncture this morning. If there are no cancer cells in the spinal fluid, as the MRI would seem to indicate, then we will choose whether to radiate or not. If there are cancer cells in the spinal fluid, then the choice will be made for us - we will have to radiate.

Sunday, December 17, 2006

A Busy Week

This week is a big one for all of us. Monday, we will meet with the NIH doctors to talk about the possibility for the the need for radiation. Tuesday is the MRI that will tell us if the chemo has worked. Wednesday is our meeting with his treatment team to talk about our plans and their recommendations for further treatment. Friday we will go to NY and meet with the team at Columbia for a second opinion.

On a lighter note the boys are really excited for Christmas and going to Albany for the holidays. Mateo and Mason are talking about snow and I hope the weather delivers. mason sings Christmas songs and Mateo is in charge of the countdown of days until Christmas.

Everyone send positive energy this week and think " NO CANCER " on Tuesday morning-(and every day really) We'll try and update the blog when we can.

Tuesday, December 12, 2006

Another visit to the hospital.....

Well it was expected so last Wednesday- the 6th- we went to the hospital with a fever. We wound up staying 5 days and just got out on Monday morning. He had a bacterial infection. But some interesting things happened while we were there: a visit from Laura Bush to the floor, two holiday concerts, and presents galore. He played video games with his 19 year old roommate. It was very cute and Mike was a good sport about this little guy climbing into bed with him and playing Super Mario.

One sad thing, a little girl went into cardiac arrest and had to be brought to the ICU. The floor is small and there was a lot of action in the room next to us. I tried to take Mason to the playroom to distract him. I thought I had done a pretty good job of diverting his attention. On the way home from the hospital that day he said to me, "See Mommy, I didn't die. I didn't need oxegyn. I got to go home" Boy oh boy- what in the world prepares you for that coming out of his mouth???

A visit to Santa

The night we left the hopsital from chemo Mason insisted we go get the Christmas tree and decorate it. It was nice for Arden to be with us and share in decorating our Charlie Brown tree.

We went with the boys the weekend after chemo to visit with Santa. Mason proceeded to pull on Santa's beard to check "if he was real" Thank goodness Santa had a real white beard and a good sport about it!

Thursday, November 30, 2006

A big accomplishment

Today we finish out last round of high dose chemo/stem cell rescue. The next step will be an MRI in two weeks and then send films to NY and Boston to make final decisions about radiation. We will do 7 months of low dose chemo no matter what happens. We are relieved this hurdle has been passed and we can move on to the next step.

This round went well. Mason did fine. He actually had to have an x-ray of his foot from all his activity with his cousins and friends. All is fine, just a bruised foot from his kamikaze stair jumping.

A wonderful hospital story: Mason was coming back from x-ray and he got sick in the hallway. He had thrown up in a towel and we were waiting for the nurseto bring a bucket. A little African American girl, around age 8 name Kwanje, came out and said " Here Mason, here's a bucket. Don't worry it happens to all of us." She rubbed his shoulder while we cleaned him up. Angels comes in all shapes in sizes. She is a cancer patient here who Mason has played with a few times. What an act of kindness.

Sunday, November 26, 2006

Thanksgiving- A big break

It was wonderful to be able to go to NY for the holidays. It was a much needed respite from the treatment process and the boys had a wonderful time with their family.
We visited their cousin Evan's class for a Thanksgiving party and parade, had some great pizza, and played alot at Aunt Noel's house. the boys suggested we live closer to them because it was so much fun. For Thanksgiving, we had dinner at Danielle's sister's house and all the cousins played despite the torrential rain that day.Mason felt good most of the week and was determined to stay up as long as he could to enjoy his time away from DC. It led to many late nights.

We stayed at Danielle's Uncle Joe's and Aunt Karen's house and enjoyed his wonderful cooking. We got very spoiled. Mason and Mateo loved playing with their dog Lucca.

We will begin Mason's last round of high dose chemo tomm. More details to follow!

Sunday, November 19, 2006

Out of hospital

It took four nights, but Mason was able to get out of the hospital yesterday morning after the fever broke and his blood counts stabilized. He is fine, running around with his brother. We were able to depart on schedule to see family for Thanksgiving.

Wednesday, November 15, 2006

Back in the hospital

Mason got a fever last night, so he is back in the hospital until Thursday or Friday receiving some antibiotics. The direct number to his room is 202-884-4394. The phone receives calls until 8PM EST.

Sunday, November 12, 2006

Video from Bobby Boswell visit


Latest round of chemo over

Mason finished his 5th round of chemo on Thursday. The chemo went well. Just one more to go, the week after Thanksgiving.

Mason and Mateo had a special treat on Wednesday when Bobby Boswell, the young all-star defender for the MLS soccer team DC United paid a special visit to Mason for about an hour. Since both boys love soccer so much they were very excited. Bobby brought Mason a soccer ball signed by all the DC United soccer players, along with a bunch of other DC United paraphernalia. Bobby showed the boys some card tricks and some tricks with the soccer ball. They were very excited, and we appreciated this nice young man taking the time to visit Mason.

Wednesday, November 01, 2006

A Great Halloween!!

We had a wonderful time yesterday. Mason went to school. They have a big parade through the neighborhood. Although Mom and Francisca wound up carrying him most of the way....he loved it. Mateo of course loved it as well. A good community event.
We then had pizza with our neighbors in the night before trick and treating. Our neighborhood has great nightime trick or treating. Mason pooped out early and helped us give out candy at the door.He answered the door with all our diffrent scary masks from the dress up box.

We are off to the clinic tomm for his pre-chemo checkup. He will go in on Nov.6 for his next round.

Friday, October 27, 2006

Things holding their own

Mason at the hospital yesterday with one of the therapy dogs

We had a good clinic visit yesterday. No transfusion and he is feeling pretty good even though his white blood cell count is zero. He went to school Tuesday and Wednesday, which he loved. We'll keep our fingers crossed for no fevers this weekend and get ready for Halloween.

Sunday, October 22, 2006

Update- Fourth chemo finished

Last week we had the fourth round of chemo. This is a different type of chemo. It is two days of carboplatin and thiotepa, a day of rest and then the stem cell transplant. It was less intense in terms of vomiting for him. The interesting thing is you have to bathe him every four to six hours in order for the chemo not to sit on his skin. It can cause sores and a burn. So Mason was the cleanest boy on the planet last week. He has had some more post chemo vomiting every day. We were in a restaurant the night he was released and the smells bothered him and he threw up all over. You have to have a good sense of humor about it all. He was pretty mad he couldn't eat his pasta and we had go home and shower.
Otherwise, we are all doing fine. Mason played in his soccer game yesterday. Mateo scored three goals at his game. Mason will go to school again later this week when his counts are back up. He is very excited about it and there are a few boys from his soccer team in his class. He did experience someone making fun of him being bald at his soccer game this week, but he recovered quickly, especially when Mateo told him some kids are stupid. Good to have a big brother to defend him.
So this week will be just watching his blood counts and a clinic visit on Thursday if he has no fever. We should be home most of the week.

Friday, October 13, 2006

Final MRI results

We reviewed the final results with Dr. Rood yesterday. The preliminary results were confirmed - the cancer has retreated and cannot be seen. Mason still has the spot on his lung, which was originally found when he had the MRI after the tumor resection. The spot is not cancer, but may be from an infection he may have had some time in the past. It is about 9 millimeters across. It may have grown by a millimeter or so since the last MRI, so they are looking at it closely. If it has grown due to him being immunosupressed, it may mean that it is an active infection, in which case it will need to be taken care of before he gets any more chemo. If it is determined that it has not grown then it is probably just something left over from the past, and the 4th round of chemo will proceed next week. They are making the determination this morning.

So the final results were great! Dr. Rood confirmed that they are "optimal".

Mason has his first day of class at his new school today - just happens to be a field trip! Tomorrow he has his first soccer game. We will try to put some video on youtube.com. Look for the URL here on Sunday or Monday.

Thursday, October 05, 2006

Preliminary MRI results - good news!

Since Mason was already an inpatient, they decided to go with the "mid-term" MRI today to see how the chemo is working.

The preliminary results were excellent! There is no evidence of the original large tumor, and the multiple small tumors (which the doctors had described as "paint drops" on the original MRI) are all gone. There was a question about one of the smaller ones - they couldn't quite be sure it was gone, but they think so. We will have final results on Monday.

So we are going in the right direction, and hopefully the last three rounds of chemo will kill the last vestiges of cancer, if any still exists.


Mason is in the hospital with a fever. He went in on Tuesday and has receieved antibiotics and some more transfusions - his hemoglobin and platelets were low. They have moved his MRI that was planned for the 11th to today to take advantage of the easier logistics while he is admitted. He has had no fever for over 24hours and hopefully will be released by Friday. He is in good spirits overall and anxious to get back home.

Monday, October 02, 2006

Mason home and playing

One of the last days in the hospital with the family

Mason is home so far and doing well. He went in for blood work today and his hemoglobin was low so he got a tranfusion. He was happy when they told him he could go home and the nurse gave some candy to him as a send off. So now we just enjoy what time he is at home. My friend Mary came down this weekend and the boys had a wonderful time. Mason insisted Mary sleep in the room with him on the trundle bed.

Mason on his new bike

Keep in mind to donate blood if you can. They always can use it and Mason certainly does often. We appreciate it.

Thursday, September 28, 2006

Mason is home

Just a quick note - Mason came home last night and is doing fine. Soccer practice was rained out tonight, but there is a game on Saturday. He is insisting on playing, and we want him to at least have that chance for a few minutes.

Some good news - the local school that Mateo attends has agreed to accept Mason into their Pre-K class, whenever he can make it. He has been asking to go to school, and is very excited about this development. The school was nice to do this, as the class is full.

Monday, September 25, 2006

Round three almost over

Mason finished the methotrexate yesterday, so that completes the third round. Now we just wait for him to clear it from his body so he can go home. Francisca is on duty at the hospital today and tonight so Mom and Dad can catch up and spend some time together. We are incredibly grateful to have her with us. It is a tremendous help.

Mateo is doing better and is enjoying his soccer league. We try and balance our time between the boys when Mason is in the hospital. Our block where we live is only one block from the school and has many boys in the neighborhood. Everyone has been wonderful here and we feel very supported by our new neighbors. In case you do not have it our new address is:1711 North Barton Street Arlington VA 22201. Our new home number is 703-888-0777

Thank you to everyone who has called and sent notes, posters, and gifts for the boys and us. It is greatly appreciated! Eventually we'll get to thank you personally, so please be patient with us. :-)

Here is a photo from Mason's hospital room and the wonderful photos and pictures that have decorated and brightened his room.

It really helps! So keep them coming.
The MRI is planned for October 11. In the meantime, we will bring him to the school when he feels well and his immune system can handle it, so he can participate when he can. Francisca or mom will volunteer in the classroom so he has one of us with him at all times for now. He is excited about it. We are grateful to the Key school and its staff for making these accomodations for him. they did not have to and it really helps him normalize his life and give him something to look foward to when he is out.We'll keep you informed as things progress.

Saturday, September 23, 2006

The Chemo Continues

We are now beginning the third day of round three of chemo. As expected, the first day of Cisplatin was pretty rough for him. Day two and three with Cytoxan has not been quite so bad. This time, Mason was not happy about going back for chemo and cried the whole way to the hospital. A pretty tough ride and no way to make it better for anyone. He is pretty perceptive and was trying to negotiate what the doctors could and could not do to him in the hospital. Unfortunately, not much is in our power to change anything for him. So we keep pushing through and hope this is the last we will ever have to see of these drugs. Our MRI is scheduled for October 11 and we wait not so patiently to see if this is all working. He will then finish the last three rounds of chemo with the stem cell rescue as part of each round. 3 almost down- three to go. We shall see....

Monday, September 18, 2006

Quick medical update

Mason's counts are good so we will start the third round of chemo on Thursday, Sept 21. His hearing test today was good. So far no hearing loss from the Cisplatin. Mom gets to stop the shots, for which she is very grateful. :-) So we will keep you posted through the next process. It will be an important one as we will be doing the MRI after this round to see if the chemo is working. So keep praying and sending good thoughts our way!

The BIG Birthday!!

It was wonderful this weekend. Mason had been on the verge of a fever Friday, so we were a bit worried he would need to go back into the hospital over the weekend. But positive thoughts prevailed and he was fine for his 4th birthday. His Nana and Uncle Joe and Aunt Karen came down from NY for the big day, as well as some friends in the DC area that we know from Bolivia, Honduras and Ecuador.
He got a rockstar guitar, a Batman, and a soccer goal from his family. He rocked out all morning before the party and played some soccer with his birthday guests. The cake was a Batman cake with some added figures from Mason and his brother, Mateo. Mateo made the birthday sign for Mason. In true Latin fashion Mason bit the cake and put his face in it. he loved that part the most I think! We went to the playground at the school and played some football and soccer after the cake.

He got many phone calls and cards wishing him a great birthday. He had a wonderful day and we so appreciate all the friends and family who sent thier good wishes for him.

Monday, September 11, 2006

How you can help:

A lot of people have asked- or said they want to help in any way they can. In order to make it easier and for people to have some way to feel they are helping, here are some ideas:

If you live close by:
Come and visit in the hospital, come and baby sit for a little while so Kirk and I can eat a dinner together, take Mateo out for a play date, when your kids are healthy have us over to play, mow our lawn, make some food to freeze.

If you live far away:
Keep calling! Or sending e-mails- they really help us when our spirits are low, Call Mateo when Mason is in for chemo (he gets a little down and worried when he is in the hospital), keep sending notes and cards
(Mason loved telling the docs all his friends who sent him notes and posters)

Things everyone can do:
There is a great website that has many ideas to help friends and family come up with ideas: http://www.squirreltales.com/parents/friends.html

o Pray and send positive energy our way
o Donate blood at your local blood bank- Mason has had to have three transfusions so far and every blood bank needs supply
o Talk to your local cancer center and find out if they need gently used toys for their playrooms.
o Raise fund specifically for DC Childrens Hematology/ Oncology Group http://www.cnmc.org/ to help enhance its program. They serve many underserved communities and many cultures
o Help translate documents into Spanish or French-there are so little resources for the multicultural community that the hospital serves.-Let Danielle know via e-mail danielleleach@yahoo.com if you are willing to do this
o Collect used Nintendo and Gamebox games that you no longer use and send them to us. The hospital has stations that can be moved into the rooms and always need more games as many get lost - for more information you can go to the Starlight Foundation website-http://www.starlight.org/site/c.fuLQK6MMIpG/b.1038035/k.BDF4/Home.htm Mason has had his first experience with Nintendo at the hospital and has loved it!
o Donate to the Childrens Cancer Foundation- they are a local DC, Northern VA and MD organization that does tremendous work in the hospital http://www.childrenscancerfoundation.org/aboutccf.html

We appreciate any and all help. We are so grateful for the outpouring of love and support from everyone. It has gotten us through this so far.

Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.—Helen Keller

Saturday, September 09, 2006

Mason is enjoying his time home

The last round of chemo went fairly well. The cisplatin and the cytoxan were the hardest for him. But when he was feeling well, he played in the playroom and was up around playing soccer. He is enjoying his time home now. His white blood cell count is low but so far no fevers to send us back to the hospital. One thing he does not like about being home is that Mommy has to give him a shot of Neupogen(a drug to help boost his white blood cell counts) every night. It leads to many tears and negotiating. The next round of chemo should start the 18th, after his birthday on Satrday. He is really planning his birthday- should be some superheroes of all types. He is having a hard time deciding which one should be the theme of the birthday, so we plan on using all of them.

Friday, September 08, 2006

Mason is home

Mason got out of the hospital on Wednesday, 9/6, and is now home, feeling pretty well. We will try to post some pictures this weekend. His 4th birthday will be 9/16, and then he goes in for the next round of chemo on Monday, 9/18.

Saturday, September 02, 2006

Chemo continues

Mason gets his last dose of chemo today. He will then be in the hospital until Wednesday or so, while it works its way through, and out of, his system. Here are a couple post-op pictures, along with another one from just before we came back to the U.S.

Left: Here are Mason and Mateo right before Mason was diagnosed.

Below: Mason, 3.5 weeks post-op, with his cousin.

Below: Mason after first chemo round

Friday, September 01, 2006


Mason at World Cup Day, Academia Cotopaxi, Quito, Ecuador - June 2006
Our son, Mason, was diagnosed with a brain tumor on July 7th, 2006 in Ecuador, where we were living. We appreciate very much the concern and support of family and friends for Mason's well-being, and have established this blog as a resource for keeping everyone updated on his progress. We will try to update it as often as possible.
Mason was diagnosed with a medulloblastoma brain tumor, which was successfully removed on July 10th by Dr. Neil Feldstein at New York - Presbyterian Hospital, after we were medevaced from Ecuador. Everyone at the hospital was wonderful to us - highly recommended. Mason spent a week at the hospital before being released. He endured temporary full mutism and imbalance for three weeks, before starting to speak again. This is a common effect from this operation, and was very frustrating for him and the rest of the family. Gradually, he has returned to normal with regard to speech, and almost normal with regard to balance and walking. His walking continues to improve and he even broke into a little jog the other day.
After the operation, we received the news that the cancer in the tumor had spread to Mason's spine and cerebellum. My employer, Peace Corps, very kindly offered me a position in Washington, DC, so after a short recuperation in New York, we travelled to DC to determine whether appropriate treatment was available for Mason. After ascetaining that it was, we relocated here in late July.
Mason is currently undergoing chemotherapy at Children's National Medical Center with a world-reknowned team led by Dr. Roger Packer, a leading expert on medulloblastoma management. The regimen is six cyles of nine days as an in-patient, followed by nine days out (but he has to go back in if he gets any kind of fever). He is currently in the hospital receiving his second cycle of treatment. After the third cycle, an MRI will be done to see if he is cancer-free. Whether he is or not, the treatment continues until the end of six cycles. He has had stem cells harvested, to be transplanted near the end of the six cycles to help him recuperate.
So far, Mason has tolerated the treatment relatively well. We are very proud of what a brave little boy he is. He very much appreciates all the wonderful cards and posters that folks have made for him, along with the games and toys.
We are also proud of the way that his big brother, Mateo, has handled Mason's illness and our sudden move from Ecuador. He did not even have time to say goodbye to any friends, and we had to leave our dog and two cats behind for now, although we expect to get them sent up in a few months. Our nanny, Francisca, will also be joining us in Washington, for which we are very thankful.
We are relocating to Arlington, VA, and will send out new contact info ASAP. We found a tiny, expensive three-bedroom house in this crazy real estate market, but at least it is very close to the hospital, Kirk's work, and Mateo's school (just one block). We move in on 9/15, just one day before Mason's 4th birthday.
That's it for now - more to follow.