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8-27-08

August 27th, 2008 by admin

Riktor has had his 3 month check up MRI, it was the same - Yay!  We did discover from a blood test, however, that Riktor’s thyroid was damaged during radiation.  He has hypo-thyroidism.  His thyroid isn’t processing the chemicals that his brain is making.  He will need to take a pill for the rest of his life, but once again, we get a way with a side effect that could be much worse.  He has already started the meds and the docs say, he should he should have more energy within 3-4 weeks.  I have disabled the comments on the website, I think, so just e-mail me directly if you want to comment.  Sorry, but I have been getting several hundred spam e-mails a day.  Thanks for checking on us, Melissa

Posted in Updates | No Comments

8-12-08

August 12th, 2008 by admin

Well I hate to use this website for things like this, but I guess I have to use all of the resources I have.  I am starting my own family daycare at our home in Rohnert Park.  I am only allowed to care for children from one family because I am not licensed, 1-2 kids would be great.  I will be registered within the next 2-3 weeks with Trustline (they do fingerprinting and background checks).  In 2 weeks I will also have renewed my CPR/First Aid training.  If you know of anyone who might be in need of childcare please pass on my info.  Thank you, Melissa

Posted in Updates, Spread the Word | 2 Comments

8-10-08

August 11th, 2008 by admin

Riktor has had his 1 year post transplant check up and is looking good.  It will take awhile to get the blood test results again that will, hopefully, show that he can come off of the meds and fight the remaining viruses that he couldn’t before.  He also had his MRI and is still the same, yay!  We are in sight of preschool starting for Riktor!!!  How exciting!!  He will start soccer again on the 26th and is excited as usual about that.

In other news, we had a blast on Riktor’s Make A Wish trip!  It was a very busy and exhausting trip, but so fun.  We all needed it.  Riktor says his favorite things were the knights at Medievel Times and the Buzz Lightyear and Toy Story rides.

We saw our CHO friend, Josh, at Riktor’s check up.  He has had his transplant and is struggling to heal, but doing as well as he can.  Riktor made him smile for the first time in days, which was nice to see.

Thanks for continuing to check on us, Melissa

 

Posted in Updates, Photo Album | 1 Comment

7-20-2008

July 20th, 2008 by admin

CureSearch Praises Passage of Landmark
“Conquer Childhood Cancer Act”
by Unanimous Consent in the United States Senate

Children with Cancer and Their Families to Benefit from Legislation

July 17, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.

The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.

“Too many young people’s lives were cut short by cancer, but their hopes were not,” said Reed. “We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs.”

Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.

“Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer,” said Coleman. “I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure.”

CureSearch supports the life-saving research of the Children’s Oncology Group, the world’s premier cancer research collaborative. Treating 90 percent of children with cancer, the Children’s Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children’s and university hospitals across North America.

“The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer,” stated Gregory Reaman, MD, Chair of the Children’s Oncology Group.

“On behalf of my colleagues in the Children’s Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer.”

“We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed,” said Stacy Pagos Haller, Executive Director of CureSearch.

Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.

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7-17-08

July 17th, 2008 by admin

July 13th was Riktor’s one year anniversary for his stem cell transplant!  We had a party with his friends to celebrate this ‘2nd birthday’.  They had a blast.  Riktor will go in for his 1 year post-transplant checkup with all of the tests that go with that at the end of this month.  He’ll also have his regular MRI on 8-7.  We anticipate everything to be fine, yay!  Everyone is enjoying Stacia visit home for the summer and getting very excited about Riktor’s wish coming up next week!  Stacia had a great time at Camp Okizu again.  We’ll be going to family camp at Okizu at the end of August, it should be a lot of fun.  Just wanted to check in, it had been awhile.  Thanks for checking on Riktor!

Posted in Updates | 2 Comments

6-11-08 / Day +334

June 11th, 2008 by admin

Exciting news, Riktor’s Make-A-Wish trip is now in the works. We’ll be leaving July 25th and coming home July 29th. We’ll go to Medieval Times, Disneyland and Knotts Berry Farm. We’re all very excited, Riktor definitely deserves this. Stacia comes home for the summer June 29th after going to Camp Okizu for a week. Riktor is still feeling great and, hopefully, this will be a great summer! Love, Melissa

Posted in Updates, Photo Album | 5 Comments

5-16-08 / Day +308

May 17th, 2008 by admin

We received the most wonderful news today…………..The last of Riktor’s BMT blood test results came back.  He is off of all of his restrictions!!!!  No more mask or diet restrictions and he can do all of the things he’s been missing out on.  He can go to any playground he wants, be in large crowds of people, go swimming, be around flowers, sit on the grass and all of the other things.  We celebrated a bit today and bought some new sand toys to bring to the park tomorrow.  Then we had dinner at McDonald’s (or Old McDonald’s as Riktor calls it).  Of course, that has been the one place he has been dying to go eat at.  We are ecstatic!!!  I cried when I heard.  It’s been about 11 months since his transplant.  I feel like a big weight has been lifted off of us.  He was really starting to get sick of the mask and everything else, even though he has been such a good boy about it.  He has to continue taking 2 of his medicines.  One of the ones he was taking got to be stopped today as well.  He doesn’t even have to have blood tests anymore unless we are going in for something else like an MRI, then they will check them.  So that’s it 2 medicines and getting monitored every 3 months for now with an MRI, check up and BMT blood test until his full recovery.  But he’s almost there, you could say he’s about 90% recovered.  He just needs to be able to fight off a few more viral infections and then can come off the last 2 meds and be at 100%.  Wow, we are so excited!!!  What a champ my little boy is.  I can’t believe how strong and resilient he is.  All of you wonderful people out there keeping him in your hearts has to have helped somehow, it’s incredible.  Love, Melissa - Mom to the best kids ever!

Posted in Updates | 7 Comments

5-4-08 / Day +296

May 4th, 2008 by admin

Wow, almost day +300. Well, we got Riktor’s blood test results back and they were disappointing. Nothing is worse but they showed no signs of being able to have any of his medicines or restrictions lifted. We were really hoping he would be able to resume some more “normal” kid activities. Oh, well with time. The Make A Wish trip will have to be postponed again. They won’t test him again until the beginning of July. Hopefully, there will be some progress on that one or he will have to wait and start preschool late. he is still feeling good, though. In good news, his regular blood draws are only once a month now. His blood counts on the surface are close to fully recovering. He has a check up on the 9th and then probably won’t be seen again for a couple of months, until the next MRI and post-transplant blood test. That’s a big step! Our friend, Josh, is going ahead with the umbilical cord transplant match that they have found even though it isn’t a 100% match. He has been feeling awful, our thoughts are with you Josh! Aunt Cheryl did a nice story on him to encourage more bone marrow donors. If you would like to see it, the link is:

http://abclocal.go.com/kgo/story?section=news/local&id=6114325

We just heard about another boy we know from 5 South named Enrique who is having a hard time and is failing after a bone marrow transplant.  I’m so very sorry and very sad.  We will keep you in our thoughts. Love, Melissa

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4-20-08 / Day +282

April 20th, 2008 by admin

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Here’s Riktor playing soccer, his favorite activity. .

Coach Renee is next to him. She is really great with the kids. Thank you for all you’ve done to help Riktor.

..

Riktor and Nolan fishing.
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Daddy, Riktor and Grandpa Jim.
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This is how Nolan smiles for the camera.
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Grandpa and Riktor are praticing with the new fishing pole in the backyard.
.Daddy and Nolan - cute!
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Riktor climbing the rock wall at Kindergym.

Riktor had his follow up MRI last week, everything is the same - yay! Now we are waiting for his post transplant blood test results, which we should get back this week. He is doing great! Love, Melissa

Posted in Updates, Photo Album | 1 Comment

3-29-08 / Day +260

March 29th, 2008 by admin

Riktor jumping after he got his tubes out, how cute!  He’s doing great right now.  His counts have gone up enough that he has blood draws every 2 weeks instead of every week.  Yay!  Gotta go.  Love, Melissa

Posted in Updates, Photo Album | 3 Comments

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