This --The Cancer Warriors Webring-- site owned by Lance Lawson. Want to join The Cancer Warriors
Webring? |
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This --The Cancer Warriors Webring-- site owned by Lance Lawson. Want to join The Cancer Warriors
Webring? |
Want
to help
some children?
Will would like to hear from you
.Support The Leukemia & Lymphoma Society and Team in Training to help find a cure for leukemia by supporting a marathon runner.
NMDP List of Patients in need of donors.
The Long-Term Follow-Up Program for Survivors of Childhood Cancer at Packard Hospital needs help. What can you do?
The World Wide Child Cancer site has information about what it is like to be a child with cancer and has hints about how you can help them.
Leukemia
Fundraising Web Site
The Greater Bay Area chapter
of Make-A-Wish has brought lots of happiness to Will. Check Make-A-Wish Foundation of America to
see
what you can do to help a child.
Connected for Cancer
offers information about a multitude of cancers including childhood
leukemia.
Christopher did
not survive but you can help others.
In Ryan Grumish's Web Site
you
can read about his upcoming anniversary.
Greg's Leukemia Journal is a very powerful journal detailing how 14-year-old Greg is dealing with his ALL and BMT right now. You can read about the ups and downs that transplant patients have each day.
Christina is
a
young women who will be receiving a BMT to cure her of a very
unusual blood
disease. She is keeping a very thoughtful journal.
Please read
what she says and send her words of encouragement.
Doris Gowen was a very brave girl who battled a very dangerous form of leukemia. She passed away in May. You can read about her experimental treatment,as well as the very touching messages on her memorial site.
During the second trimester of her pregnancy Michelle Crosby was diagnosed with CMML. Her daughter was born healthy, but now Michelle is dealing with a bone marrow transplant. She is now 6 months post-transplant. She has had complications from the BMT but after 6 months she is still free of leukemia.
Megan Bowen is only 20 months old but she needs a bone marrow transplant. Read about "Mission for Megan"
Nicky Pantazelos Memorial Page:He passed away in July 30, 1997, after a very sudden relapse. We felt very close to this boy who was born the same day as our son David. Consider giving to the Nicky Pantazelos Fund.
Joshua Eaton relapsed during the spring and passed away in October 1997. His family kept a very thorough and touching chronicle of how they made his last months special for all of them.
Planet Blortland is Diana L.E.G. Hinnrichs's site. She is not a child with leukemia but when you check her site you will see why I thought it appropriate to put here.
Kimberly Sedlacek has tons of links to stories of patients and family resources.
Nicholas
News
is pretty cheery for a site about a kid with leukemia.
Noelle Bollinger needs
to find a donor now! Her family's search for a related donor is a very
surprising story.
Steven's Place tells
the story of a boy who is home recovering after his transplant
at Packard Hospital.
Mark Holmes is a
2-year-old in Massachusetts who needs a transplant.
Nikhi wants to be
a herpetologist after she gets done battling ALL.
Leeann Terwilliger,a
teenager in Illinois, dealt with bone cancer.
Anthony Chiarelli
is a regular 10-year-old, who happens to have leukemia.
Updates
on
Katy has just turned 5.
Steven
Haley
in Texas has a great family to support him.
Tige
Phillips's story.
Young
Laura
Green, who received a transplant from an umbilical cord
donor,passed away in March 1997.
Melinda Rose Hathaway,a
Canadian girl who provided information for other cancer kids,
passed away.
Vrushali Ranadive who
passed away in April 1996 without ever finding a donor.
Julia Rosetti in
Australia passed away in December 1996. Her Web site for Kids with
Cancer is very cheery.
Jilly Gorilly's
Messages from a woman with lots of heart and a good sense of humor, who
died on October 19, 1996.
Heath
Harper's Homepage tells the story of a University of South Florida
senior's losing battle after his bone marrow transplant.
Shaun Simpson
lost his fight against leukemia.
"Donde hay ayuda, hay
esperanza "Link to the Max Foundation, helping children with
leukemia and their families all over Latin America
Squirrel Tales
Bearable Times is the
kids' hospital network.
Kid Link is an on-line place
where
kids can get together and talk in many different languages.
Starbright Pediatric Network
Convomania has lots of
inspirational comments for sick kids.
Kids with Cancer Website
The Andy Ruenes
Foundation is a non-profit foundation offering support to young
people suffering from life threatening diseases like cancer.
Transplant
America
has wide-ranging information about transplants, including a
section
on BMTs
Alan's Marrow Donation Story tells about the good feelings you can
have as a marrow donor.
Thumbnails of some
recent photos.
September
14, 2002: Look for us at the San Jose "Light the Night"
celebration on September 20!
August 25,2002: IronTeam 2002 competes in IronMan Canada in Penticton, B.C.
July 21, 2002: IronMan Mike and IronMan Jason got their heads shaved before the race.
August 26, 2001: Another great IronMan Canada in Penticton. The most exciting finish in the race was Louie Bonpua making it across the finish line just minutes before midnight. Louie is an IronMan!
August 27, 2000: IronTeam 2000 had a great day at IronMan Canada in Penticton,BC. The weather was cold and threatening, but the team did great even with numb toes on the bike ride. See our pictures from the event: Will's pictures, David's pictures, Lance's pictures.
July 9, 2000: Will and a bunch of his friends have a great time rollerskating at Cal Skate. It's Will's ninth birthday.
March 12, 2000: Helped out at Nicky's Rainbow Run. Nicky Pantazelos died from leukemia and his family is keeping his memory alive by organizing this annual run with profits going to benefit the pediatric oncology ward at UCSF. More pictures from the event.
February 21, 2000: We finally hooked up with IronTeam 2000 at a practice at Angell Field at Stanford. More pictures from the practice.
December 25, 1999: Will and the entire family hope you have a great Christmas holiday and a wonderful 2000. We will be starting the new year at the Rose Bowl.
November 17, 1999: Will visited his transplant team earlier this month and they said he is doing great. No warning signs to watch out for. He is going to be seeing less of his doctors if things continue this way. Today he saw his ophthalmologist who continues to worry about his eye problems. The symptoms are not that unusual for a transplant patient, but what is unusual is that they started to appear 3 years after the treatment. He will be getting another MRI in July.
August 29, 1999: The IronTeam ran a great race and raced
lots of money for leukemia research.
This competition started at 7am. Penticton can be an
infernally hot place during the summer, but the team got a break today
and actually awoke to an unexpected rainstorm. It didn't rain
during the race,but temperatures remained comfortable (at least to
those of us standing around!), the clouds kept the sun bearable and
there wasn't much wind.
The first event was the 2.4 mile swim. Next came 112 miles of bicycling, from Penticton south almost to the US border and then back. If that wasn't enough work, they finished up with a marathon. They had 17 hours to complete all 3 events. The honorees were into the spirit of things and stayed up until midnight to cheer all the runners in and to watch the fireworks.
July 10, 1999:Will had a great, typical birthday party for
an8-year-old. He and a bunch of his friends played miniature
golf.
July 9, 1999: We just got the good news that Will's MRI came back showing no problem at all. As I told him:
Me: The doctor finished looking at the picture of your brain. Know what they found?I know. It's an old joke. Will was a good patient for the MRI. He had to lie on this sort of gurney that they roll into the MRI tube and stay still for an hour. The MRI consists of a series of radio wave scans of his head, each lasting a couple minutes. I sat in the room with him. The worst part of it was the noise of the machine.
Will: What?
Me: Nothing!
Afterwards, the technician showed us the scans. He was able to toggle through the images so we could get a 3D type of image of the inside of his head. I don't know what Will thought, but I thought it was kind of creepy looking at the lobes in his brain and his spinal cord and other parts.
We are now done with the neuro-oncologist and are going back to the ophthalmologist. The soonest they could see us is September 15!
June 21, 1999: The ophthalmologist says that Will's symptoms do not seem to be consistent with a tumor, but they are consistent with any other issues, either. Will is going to have an MRI on July 1 to see whether they can isolate the cause of his problems.
June 14, 1999: At Will's regular hospital visit, his ophthalmologist noticed some troubling changes in his left eye. I guess most of these transplant patients develop cataracts, and Will is no exception. They will monitor the condition of the cataract, but do not expect it to progress. The other concern is that vision and strength in his left eye have deteriorated quite a bit over the past few months. We will be taking him to see a neuro-oncologist (if the insurance people ever approve it!) and possibly getting him a CAT scan. We are hoping that this is just an effect of his chemo and nothing worse.
May 1, 1999: We drove down to Lake San Antonio to watch the Iron Team compete at the Wildflower competition. Will had a great time cheering everyone on.
April 21, 1999: Will is an honoree for a team of IronMen who will be competing in the IronMan competition in Penticton this August. Go Team!
Will's physical condition continues to be essentially perfect. Certainly as good as anyone who has had a BMT can expect. Will is a typical, bright seconder grader. He is taking gymnastics lessons and he is a demon at tether ball.
July 31, 1998: Please support Team in Training. Will is an honoree for a team of triathletes. Having a group of athletes who are thinking about him is important to leukemia patients. The money that these people are raising is even more important because it supports the efforts of the Leukemia Society of America's efforts to support leukemia patients and find treatments for this awful disease.
July 24, 1998: We had a bit of a scare today but it all turned out OK. Will had his regular 3-month exam. His blood test came back showing him low on platelets, but all the other counts were fine. When he relapsed in 1995, the main thing we saw was that his blood counts, especially platelets, kept dropping, so we were a bit concerned. We heard back from his doctor on the 27th that the reason for the low count was that the platelets in his blood sample had clumping, so they did not have an accurate platelet count. The fact that they clumped indicated that his platelets are just fine, so we have nothing to worry about.
May 11, 1998: Every year we go to Courageous Kids Day, an event sponsored by the Santa Clara County chapter of the American Cancer Society and supported by Paramount's Great America. They sponsor a free day at the park for kids with cancer and their families. We also have a great time at the picnic where we get to see celebrities, play games, dance to disco and get pictures taken. All this is supported by generous contributions. Here are some of our pictures from this year.
April 9, 1998: The boys are both playing farm division baseball this year. Because of all the rain we have not had as many practices and games as they would like, but it is fun anyway. For the first time ever, David and Will were on opposing teams at a game on Tuesday. Both boys got good hits. Dave hit a home run and Will got a solid single. Will says the score was a tie. David thinks his team won 17-10.
The best news for Will is that there is no news to report on his condition. No sickness. No GVH. No complications are showing up. His most recent hospital visit showed no abnormalities in his endocrine system, eyes or growth. In fact, he is the same height that David was at this age.
Will is participating in a study to see what the long term effects are of radiation treatment. Apparently the blood vessels sustain more damage from radiation treatment than the heart does. Later on there is the chance that his heart will maintain its strength while his blood vessels could deteriorate. This kind of mismatch of functions can have serious effects. The doctors - and we - are hoping that the lighter radiation treatments these days will minimize the risks, but patients who received treatments years ago suffered much more from this.
December 25, 1997: This has been one of our happiest years ever. Dave, Will, Marla and I have accomplished so much. I wonder if we can ever have another year to top this. And all we really have been hoping for is just to have another year. There are so many dear children who didn't live to see this Christmas.
November 5, 1997: Will has his 2-year post-transplant check up. The tests all come back very good. He is even growing at a normal rate for a kid his age. For the first time we understand that stunted growth is not necessarily a side-effect of his treatment. We have been so lucky up to now, it seems selfish to hope for even a little more.
August 27, 1997: Will and David start school today. Will feels very grown up now that he is in first grade. David is in third grade.
May 15, 1997: The newspaper supplement called 4KidsOnly includes a story about Will and David.
May 12, 1997: Each year on Mother's Day, the county chapter of American Cancer Society and Great America , a local amusement park, sponsor Courageous Kids' Day.Local families who have children with cancer are invited to spend the day at the park. In addition to the rides, they provide lots of fun in the picnic area with local sports celebrities, wheelchair basketball, face painting and more. This is our 4th year in attendance and each time there are two things which impress me. The first is the huge number of people who have children with cancer. The second is that in the great majority of cases, it is impossible to tell which child it is who has cancer. It is reassuring to know that with proper treatment, kids can start leading normal lives, if only temporarily.
May 11, 1997: Just one day early for Mother's Day, Marla Miller won an Emmy from the National Academy of Television Arts and Sciences for her series "Will's Story" which was broadcast last year on KNTV. A friend at the station managed to get tickets for all of us to attend the ceremony. Marla was so excited to win. She took the boys with her up to accept the award and it was a very emotional moment for everyone in the audience, too. Will was so pleased about his trophy. He carried it around and showed it to everyone. As we left the hall, he fell on the escalator and broke the wings off the Emmy. Marla now has a flightless Emmy. In the picture at the top of the page, David is holding the pieces of the wings.
April 11, 1997: Will has his bimonthly visit today and his
counts look great. His red blood count is marginally high, but they say
it has nothing to do with leukemia or the transplant. The scheduler at
the hospital arranged for Will's appointment to coincide with those of
his 2 best friends from the unit - Dom and Sebbie.
February 14, 1997: Will is now being checked up every other month. Counts WBC=7.5, RBC=4.31, HGB=13.4. All of them are in the normal range.We noticed that another patient we read about on the Web was getting his immune function quantified as a percentage and asked whether Will had such a number. His transplant team told met they don't quantify immune reconstitution studies and weren't sure how they could do that for us, but they said his immune system is in great shape. Continuing on that line, they also forwarded his Post-BMT Immunization Schedule. Even though he and David were current with immunizations at the time of Will's relapse and transplant, Will still needs to repeat his immunizations. The general rule is that patients may not receive live virus vaccines. Others in the household should avoid live virus oral polio vaccine. No varicella vaccine for anyone in the household.
At this point, Will is due to receive inactivated polio virus, hepatitis B, diphtheria/tetanus, pertussis, haemophilus influenzae type B, pneumococcal vaccine and influenza vaccine every fall.
January 21-23, 1997: The rest of the week is taken up with a tour of the FBI, the Capitol, the White House, Ford's Theater, and the Peterson House, where President Lincoln died. David, who will soon be 8years old, enjoys a lot of the sights, but Will thought lots of this was boring. His main request was to go back to Zoe Lofgren's office to see Kelly, one of the assistants there. David enjoyed seeing all the weapons on the FBI tour.
Our biggest event this week is going to see the opening of the 24Hours in Cyberspace Project at the Smithsonian Institution's National Museum of American History. We really enjoyed seeing ourselves in the exhibit and meeting others from the book. Will and "Bathtub Lady" seemed to hit it off. Later on the evening, Vice President Gore came by and the boys managed to get his autograph.
January 20, 1997: Will is feeling great this morning. We bundle the kids up and take the Metro down to the Capitol where we stand outside in the cold to watch the swearing in. The boys aren't able to see anything unless I pick them up, so all the standing around is pretty hard on them. About 5 minutes before the swearing in, Will starts complaining that he's falling asleep. But when the cannons start firing, he's wide awake.
After the ceremony, we head back to the office of our representative, Zoe Lofgren, whose staff arranged lots of fun and educational activities for us this week. Then we head for our seats to watch the Inaugural Parade.I guess the President had an extra helping of cheesecake for dessert, because the parade starts about an hour late. The boys finally see something they really enjoy, but pretty soon Marla and I are getting really cold. We also have a long Metro ride back to the hotel so we can get dressed to go the Inaugural Ball, so we leave before it's all over.
January 19, 1997: We fly to Washington, DC. We had hoped that Will's fever would get better, but he is really dragging all day.I am starting to wonder what we will do if Will isn't feeling well enough to go to the Inauguration. Once we get to our hotel, we call a doctor who prescribes an antibiotic. Twenty minutes after taking the first dose, Willis back to his normal, active self.
January 13-18, 1997: Marla and the boys spend 4 days at Disney World while I work. The parks are pretty impressive, but I think what pleases Will and David the most is the heated lagoon at our hotel. On Friday, despite the cold weather, Will spends all afternoon in the water. I know that cold doesn't cause "colds" but he winds up with a fever that keeps him pretty quiet on our last day there.
January 12, 1997: I have a business trip to Orlando,
Florida, and decide to take the family. (Going to Orlando is a common
request from
kids to Make-A-Wish Foundation but
this time my employer is the benefactor. Our first event is getting up
early in the morning to watch the 4:27 AM launch of the Space Shuttle.
Horses
Plain old vanilla ice-cream
Brother, David ,who is Will's bone marrow donor.
Alexa and Dominic
Mediconsult.com is a patient-focused medical web site with peer-reviewed content
Author: Lance Lawson
You can reach me by e-mail at: lanceplawson@comcast.net
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