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Sunday, March 8, 2009 9:10 PM CDT
My stomach is in knots which can only mean scan anxiety. Wyatt of course wanted to know if this visit tomorrow was going to require a "shot," which in Wyatt terms means having to draw blood or start an IV.
What I find so incredibly funny is that Wyatt hates this procedure, but is perfectly happy to pull out the IV by himself when the time comes.
Wyatt has had an interesting winter, double sinus infection, pneumonia, and a possible bowel obstruction all at the same time followed by several periods of fevers that we thought had resolved.
We were fortunate to have been able to go through the HEM/ONC clinic. They ALL take such good care of Wyatt, and Wyatt loves seeing everyone there and they have fun with him as well. We were able to have Wyatt have all the tests run from the clinic and get IV fluids from the clinic. This prevented us from being admitted to Club Med, although there was a few times when I might have felt more comfortable with him on the floor.
Unfortunately our family has spent way too much time at Drs. offices lately. I would be lying if I said it has not taken a toll on me. I am looking forward to spring, and an end to pnemonnia, strep, and bronchitis.
Bryce hurt his back in basketball, and is out for the rest of the season. Being that basketball is life for him, it has been very hard for him. We see the spine specialist again on Thursday.
Ali ended her basketball year with a sprained ankle. She needs physical therapy to strengthen both ankles and is looking forward to softball.
Carter played his last basketball games on Saturday. I have enjoyed watching him find that competitive desire this year.
Justin has been helping coach a 6th grade basketball team from the Winona YMCA. They won the Girls 6th Grade State Championship today. This summer he will be staying in Winona and will be coaching baseball.
Our Wilms Tumor community has seen too many angels as of late. It is hard to hear how these children, their families, and their communities are struggling.
But in the midst of the sorrow we are seeing good, and many families have honored their children with memorial, or by participating in Milestone Walks that have contributed to The CureSearch National Wilms Tumor Initiative.
As of February 4th The CureSearch National Wilms Tumor Initiative had a balance of $218,000.00.
We had a conference call with Dr. Dome, head of the Childrens Oncology Group's kidney tumor committee. During the conference call he updated us on how the money in the Initiative was going to be spent, and the process that was used to determine what grant would be funded.
Discussion was held about the COGS Anaplastic Wilms Tumor and Rhabdoid Tumor Meeting that was held to brainstorm new ways to fight Wilms Tumor February 19 and 20th in Washington DC among the leading researchers in the fight against this beast.
I will contact Dr. Dome and ask him to send an update on the meeting and to also give us an overview of the grant to Dr. Elizabeth Perlman that was funded.
THANK YOU TO EACH AND EVERYONE OF YOU WHO HAS CONTRIBUTED TO THE CURESEARCH NATIONAL WILMS TUMOR INITIATIVE!
You should be very proud of the research that will be taking place as a result of your efforts. The Wilms Tumor community has made an impact on Capital Hill, within CureSearch at Team Leader meetings, and at Reach the Day.
On behalf of Steve and Diane Brestel and my husband Jim, I look forward to your help in getting the Conquer Childhood Cancer Act funded, and to more research funded through the Initiative.
Kris Rech
Thursday, November 13, 2008 10:12 PM CST
Wyatt will be turning 7 tomorrow.
For all of you who know him, I think we can agree that Wyatt is 7 going on 20.
A complicated, stress filled pregnancy turned into a relatively smooth c-section delivery at 35 weeks for 9lb 1oz Wyatt.
But shortly after his delivery Wyatt would be life linked to St. Paul Childrens, and his stay in NICU would begin his life long medical treatment. The NICU would also lead us to the diagnosis of Beckwith-Weidemann Syndrome that would set Wyatt on the path of being screened every 3 months. This screening would lead to the early detection of Wyatt's Wilms Tumor that ultimately may of saved his life.
Through the never ending Drs. appointments and treatment a dimple filled smile was often found on Wyatt's face as he interacted with the staff, and people that he has met on his journey.
It is hard to believe that he is 7. He has been through and has accomplished more in his short life than most adults.
Please sign the guestbook and share birthday wishes with Wyatt!
Wyatt will be celebrating with family and friends tomorrow night.
Monday, November 3, 2008 8:52 PM CST
Alright everyone tomorrow is election day and Wyatt, Carter and I will be working the Getting Out To Vote bright and early with a rally for Senator Coleman at 7 am.
We hope that everyone will be voting tomorrow! We also encourage you to take your children and let them vote too!
We are crossing our fingers and toes for Senator Coleman, we need his help to fund the cure for childhood cancer!
Wyatt wants you all to know "we hope he wins because we need him for our Senator!"
Wednesday, October 29, 2008 9:22 AM CDT
Well my updating has been less than stellar!
Wyatt is well and is enjoying school and being outside. He loves riding his bike and playing with friends in the neighborhood. We are expecting 60 degrees here today, so he will be outside the minute he gets off the bus.
We have been busy. The first weekend of October we met Diane and Jess Brestel in Kansas City for our yearly fall trip to Worlds of Fun. Wyatt went on the biggest rollercoaster THE MAWMBA twice. While not a fan of the first hill, which is a killer, he loved the rest of the ride.
MEA weekend was spent up north with the Rohloffs. Only in MN can you have fun fishing in hats, mittens and winter coats!
Many of you have seen our commercials, heard the radio ads, or received campaign literature with Wyatt and I on for Senator Norm Coleman. If you have followed Wyatt's website at all you know that Senator Coleman authored The Conquer Childhood Cancer Act which was signed into law by the President July 29th. Senator Coleman worked across the aisle to get this bill passed. WE WILL BE VOTING FOR SENATOR COLEMAN AND HOPE YOU WILL AS WELL!
We should here today when his next scans will be.
Kris
Thursday, September 18, 2008 9:56 PM CDT
Please accept my apologizies for not updating sooner.
Wyatt's scans show NO CHANGE from his scans 2 months ago! We will scan again in 2 months.
Wyatt was a superstar that day. He had his MRI done with NO SEDATION! Wyatt wore a pair of goggles that play a movie (THINK NIGHT VISION GOGGLES)while he had his scans done. Pretty big accomplishment for a 6 year old to sit still for about 45 minutes. Then he wanted to take out his IV. The nurse humored him. She peeled the tape off and he started pulling that blue straw. It kinked a little and Daddy encouraged him to continue to pull. Wyatt turned 5 shades of green, his eyes got huge and he sat back as he pulled it completely out! I thought for a minute he was going to pass out, but he shocked us all, and made it through it with no help.
He and Ali will be seeing Dr. Dahl, the leg lengthening specialist at Gillette Childrens in St. Paul, in the coming weeks. Wyatt also will be seeing his physiotherapist, Dr. Tanaguchi.
School has started and Wyatt has enjoyed seeing his friends. Busing has been a nightmare, but has gotten better.
Fall sports are in full swing, Ali is playing volleyball, Bryce is playing football, and Carter also started playing football, but has been in a splint because he may have a fracture in his wrist. So we have been busy.....
Wyatt and I had the opportunity to attend the Republican National Convention at Senator Coleman's invitation. What an experience.
We were in a hospitality suite and Wyatt was thrilled to see some of his favorite friends. He got to see Senator Coleman, his wife Laurie, and his son Jake. He also got to see some of Senator Coleman's staff that we have met during the last 3 years. He was thrilled to see Mike Kodada, who is from Montgomery, and is a member of the Senators staff. Mike and Jake, along with Josh, another of Jake's friends, are Wyatt's partners in mischief. He truly enjoys hanging out with them. He also LOVED the steak on a stick!
Our Wilms family has 2 new beautiful angels. Emma Jordan, who we have had the pleasure of seeing the past 2 summers at Reach the Day became an angel this morning. She passed away while on her Make A Wish trip to Walt Disney World.
Super Sam Crowell left us on September 5th. She was 18 and an incredible example of strength and courage.
Our Wilm's community could use your thoughts and prayers. Please also keep our beloved Grandma David in your prayers as she is at Abbott Northwestren in the ICU with blood clots in both her legs.
Cancer does not discriminate.
Kris
Monday, August 25, 2008 7:26 AM CDT
MRI this morning. No sleep for Mom last night, and I have knots in my stomach.
We have to be at Childrens, St. Paul this morning at 9:30 for a history and physical with Dr. Messinger. Then we will be downstairs at 10:15 to get ready for the MRI and for sedation.
Kris
Friday, August 8, 2008 6:31 AM CDT
My apologies for not getting an update up sooner. Thank you to all of you who have stopped by, and PLEASE share a guestbook entry for Wyatt. He loves reading them, and what a great way for him to feel the energy and excitement from today in the years to come.
Also here is the article in the MONTGOMERY MESSENGER AND NEW PRAGUE TIMES
WEDNESDAY, JULY 30TH
Wyatt and I flew out of Rochester, Mn on Monday morning after a busy weekend of planning and waiting to see if the Haight family from Rhode Island would also be joining us in The Oval Office for the signing of the bill on Tuesday. We got the call on Sunday afternoon about 2 pm from Nancy that they would be coming to Washington DC as well. The Haight Family was also with us On March 8, 2006 when Senator Coleman and Rhode Island Senator Jack Reed introduced the bill. Their son Ben died from neuroblastoma 4 years ago on this coming Monday. It seemed only fitting that we would get to share this part of the journey with them as well. Wyatt was also looking forward to sharing some quality cannonball time with Vince, which has become a Washington DC tradition.
We also got our first look at the campaign ad that was going to begin running on Tuesday. I was not expecting to see myself and Wyatt in the ad, but was sure it was going to be Wyatt with Senator Coleman. We filmed it a while ago, and had a great time with the Senator's campaign staff. Listening to some of the out takes and conversations between Wyatt and the Senator was probaly the best part of the day. For those of you who know Wyatt, you know that trying to guess what he is going to say next is IMPOSSIBLE! There were times we were laughing so hard we were crying. You may also see other members of our family in the coming days before the election. Here is the the news release from Coleman for Senate:
First 60 Second Ad Highlights Norm Coleman’s Efforts To Help Minnesota Families, Fight Childhood Cancer
ST. PAUL – The Coleman for Senate campaign today unveiled “Wyatt’s Mom,” the campaign’s sixth ad of the election cycle. The ad features Kris Rech, mother of Wyatt, who was diagnosed with Wilms’ Tumor, a form of childhood cancer. Norm Coleman authored the Conquer Childhood Cancer Act after meeting with Wyatt and his mom. The bill, which will direct $30 million a year to develop treatments for childhood cancer, was signed by the President today.
“The signing of this important legislation is one of Norm’s proudest moments in the Senate,” said Cullen Sheehan, campaign manager. “Wyatt and his mom Kris have worked side by side with Norm in moving this bipartisan legislation forward, and he is honored to be a friend of this tremendous Minnesota family. As Minnesota’s Mayor in Washington, Norm has dedicated himself and his office to going the extra mile to help all of his constituents, big or small.”
Our flight out of Rochester was uneventful. It was so quiet checking in and going through security. Chicago Ohare....another story. Flight delay going out due to "not enough rest time between flights for the pilots because it was the end of the month," add a gate change, another flight departure time change, and then trying to move passengers around so employees and their families could get on the plane who were on standby and we were thinking we were never going to depart. We also were blessed to be sitting by the family that all the accomadations were made for that had 3 small children, 1 that cryed the whole way, and another who insisted she was going to be sick....over, and over again. We arrived in DC and had to wait for our car, which added to our frustration. Wyatt was clearly not happy with the whole situation.
And then we checked into the hotel, which was actually on the other side of the interstate from the hotel we stayed at when we were there for Reach the Day in June. No problems, and our room was 911. The Senate bill number is 911. It was a good omen, and we quickly changed and headed to Baltimore to explore the Inner Harbor and to pick up the Haight's at BWI later that night. Baltimore was wonderful, and Wyatt completed his sightseeing with blue cotton candy.
We made it back to the hotel in time for Wyatt and Nick to swim a bit before we went out for pizza at Alexandria's version of Valentino's. While it is not an all you can eat buffet like the one we always have our "family reunions" at while we are in Nebraska, it did have huge pizza slices that were delicious.
The next morning came too soon for us parents and the two boys. The boys had to be kick started to get them moving, and us parents, we just didn't sleep well. Soon after dressing Wyatt in his suit and tie we were off to Senator Coleman's office.
We arrived at the Hart building and were greeted by Andrew, and many of the staff members who we have met on previous trips. Wyatt had as much fun there as he did in the pool. Wyatt was the center of attention too as bets were made about what kind of tie Senator Coleman and President Bush were wearing. Lots of pictures were taken with Wyatt at the Senator's desk and standing in the doorway looking like he was greeting people coming into the office.
Fishing conversation abounded with members of the Senator's staff coming to MN in August.
Senator Coleman returned to his office and we were soon off to the White House where we were wisked up to the West Wing and into The Oval Office where we were greeted by President Bush and First Lady Laura Bush. President Bush signed the bill and then the White House official photgraphers rushed in took pictures and left.
The children in attendance all were given a goodie bag, including Presidential M&M's, pictures, and also a small notebook. Wyatt took his notebook to The President and asked him for his autograph. He also had The First Lady sign it, Senator Coleman, Senator Jack Reed, and Vince Haight. Soon the pen was making rounds as the other kids wanted autographs as well.
When a kaleidoscope that other children received could not be found for Wyatt he was absolutely thrilled to receive a baseball with the Presidential seal on it. It is in a blue box, with the Presidential seal on it and is by far his greatest treasure.
President Bush and the First Lady were very gracious, and spent time with each family. President Bush told Wyatt that he had a fabulous smile.
After leaving The Oval Office we went outside The White House and joined Senator Coleman and Congresswomen Pryce for a press conference. After saying our goodbyes to Senator Coleman we were given a tour of the White House with The Haight's. It was a very interesting tour, and we were thankful to our guide, who shared many interesting facts along the way.
The rest of the day was spent for the boys in the pool and for Vince, Nancy and I fielding media questions and phone calls from our family and friends. Emotionally Vince, Nancy and I were exhausted.
The signing of the bill is by far a very significant step in the process that we began in June of 2005 with Senator Coleman. But in reality it is also just a piece of paper, that authorizes the 30 million dollars for 5 years. It still must be funded.
And at what cost to our nations children? Like the Haight's the legislation is too late for Ben. His battle with cancer ended when he earned his wings. One child dying is one too many. Last year 50 percent of the clinical trials scheduled to begin by the Childrens Oncology Group could not be opened due to lack of funding.
Don't get me wrong, we are INCREDIBLY HAPPY THAT THE BILL IS LAW, BUT WE ARE ALSO REALISTS, AND OUR WORK IS NOT DONE. NOW IS NOT THE TIME FOR ANY OF US TO SAY, THE BILL IS SIGNED, GOOD JOB! WE MUST CONTINUE TO RAISE AWARENESS, AND SEE AN END TO CHILDRENS SUFFERING FROM TREATMENTS WHO LEAVE OUR CHILDREN WITH LIFE LONG SIDE EFFECTS, AND WE MUST FUND RESEARCH THAT WILL BRING US TO A CURE!
Here is last weeks update:
INCREDIBLE!
We have been living in a whirlwind of activity since Friday about noon when Senator Coleman called us to let us know that the Conquer Childhood Cancer Act would be signed by President Bush in the Oval Office today. That phone call began a flurry of activity to find flights, and hotel to get Wyatt and I to Washington DC for the signing of the bill that we have worked so hard to see passed, and signed into law. Now add an invitation to The Oval Office into the equation and can you see where it becomes overwhelming?
Many of you have followed our journey from our very first trip to Washington DC for Gold Ribbon Days in June of 2005. It was a trip that has changed our lives.....forever.
It was a trip that in some ways made us face the reality of the world we now walk in, not by choice, but because it is the hand we were dealt. I remember clearly sitting in our first meeting for Curesearch, and realizing that the money we (The Brestel's and our family) were seeking to fund research for Wilms Tumor was a dream that was not going to become reality any time soon. THERE WAS NO MONEY FOR CHILDHOOD CANCER AS A WHOLE, HOW WAS WILMS TUMOR, A CANCER THAT ONLY 350-400 KIDS A YEAR ARE DIAGNOSED WITH GOING TO SEE RESEARCH DOLLARS? In the coming day we learned some of our hardest life lessons.
So now what were we to do about "that cancer that if your child was diagnosed with was the best kind of cancer to have, or a walk in the park?"
I can tell you that a meeting with Senator Norm Coleman, and a conversation with a former MN Viking and CureSearch staff member, Doug Kingsriter helped us chose the path we have taken in the years that have followed.
"What can I do to help?" such a simple phrase but the words of Senator Coleman's were the beginning of a relationship that Wyatt treasures, and that has shown me that I do not need to be a frightened mother seeking help to find a cure for the number one disease killer of children. Senator Coleman has taught me and my family about the power of advocacy, and that even one person can make a difference. Not in my wildest dreams could I have imagined that our journey would have taken us to The Oval Office today for The President to sign our bill into law.
It has also been a hands on civics class. We have made relationships within the MN members of Congress that I will treasure, and it has shown me and others what fine people we have representing us here in Washington. But at times we have also seen the ugly side of politics and those who have been elected to serve their constituites.
Senator Coleman has been a champion for our family and every family that has been touched by childhood cancer. He has been a powerful advocate for this bill, and the research we need to find a cure. His staff has also done an amazing job, without ALL of them past and present, we would not have been in The Oval Office today! I have been proud to be represented by such a caring man who is genuine, and who keeps his promises.
Twice while in Washington DC I walked into Congressman Tim Walz's office with no appointment and sat with the Congressman and knew that we had his full support. I also enjoy meeting with Chip in Congressman Jim Oberstar's office. He always shares insight with me that helps me put the issues we are dealing with in perspective, and I appreciate his knowledge and his insight.
Walz and Oberstar were joined by Congressman Collin Peterson, who I believe was the first member of The House to sign on as a co-sponsor, and Congressman Jim Ramstad, Senator Amy Klobuchar, Congressman Keith Ellison, and Congresswomen Betty McCollum, as original co-sponsors of the bill.
That leaves my district and Congressman John Kline, and Congresswomen Michele Bachmann as the only two representatives who were not co-sponsors of the bill. Many of you probaly recieved the same "feel good" letter we all have recieved about how Kline supports childhood cancer research. Many of us also know that if he truly supports this legislation he would be doing more than trying to look good by sending out letters to convince us of his support. He also would have know that at the time of his letter, July 18th, that the bill had passed in the Senate on July 16th. But this is another topic for another time.....in simple terms put your money where your mouth is Congressman Kline.
Thank you to Jimmie, Justin, Bryce, Ali, Carter, and Wyatt.
Thank you to Grandma and Grandpa Rech and for our family and friends who have supported us since this journey began.
To our Wilms family for sharing their children with us, for becoming some of the best friends and family we are blessed to have.
Special blessings to our Wilms Warriors, and our Wilms Angels, who are missed daily, for inspiring me with their courage and determination.
Thank you to CureSearch and its staff, to Jayne Jones, Rachel Gustafson, Andrew McKechnie from Senator Coleman's office, Kelly Cotter, and Brendan Devine for their efforts in advocating for this bill.
LASTLY THANK YOU TO EVERY ONE OF YOU WHO HAS CHECKED IN ON OUR FAMILY, TO THOSE OF YOU WHO HAVE BEEN EMPOWERED TO SEND THAT EMAIL, OR MAKE THAT CALL TO HELP US TO GET THIS BILL PASSED.
THAT DREAM GOT A BIT CLOSER TO REALITY TODAY WITH ALL OF OUR HELP.
More tomorrow....
Love,
Kris
Tuesday, July 29, 2008 11:33 PM CDT
INCREDIBLE!
We have been living in a whirlwind of activity since Friday about noon when Senator Coleman called us to let us know that the Conquer Childhood Cancer Act would be signed by President Bush in the Oval Office today. That phone call began a flurry of activity to find flights, and hotel to get Wyatt and I to Washington DC for the signing of the bill that we have worked so hard to see passed, and signed into law. Now add an invitation to The Oval Office into the equation and can you see where it becomes overwhelming?
Many of you have followed our journey from our very first trip to Washington DC for Gold Ribbon Days in June of 2005. It was a trip that has changed our lives.....forever.
It was a trip that in some ways made us face the reality of the world we now walk in, not by choice, but because it is the hand we were dealt. I remember clearly sitting in our first meeting for Curesearch, and realizing that the money we (The Brestel's and our family) were seeking to fund research for Wilms Tumor was a dream that was not going to become reality any time soon. THERE WAS NO MONEY FOR CHILDHOOD CANCER AS A WHOLE, HOW WAS WILMS TUMOR, A CANCER THAT ONLY 350-400 KIDS A YEAR ARE DIAGNOSED WITH GOING TO SEE RESEARCH DOLLARS? In the coming day we learned some of our hardest life lessons.
So now what were we to do about "that cancer that if your child was diagnosed with was the best kind of cancer to have, or a walk in the park?"
I can tell you that a meeting with Senator Norm Coleman, and a conversation with a former MN Viking and CureSearch staff member, Doug Kingsriter helped us chose the path we have taken in the years that have followed.
"What can I do to help?" such a simple phrase but the words of Senator Coleman's were the beginning of a relationship that Wyatt treasures, and that has shown me that I do not need to be a frightened mother seeking help to find a cure for the number one disease killer of children. Senator Coleman has taught me and my family about the power of advocacy, and that even one person can make a difference. Not in my wildest dreams could I have imagined that our journey would have taken us to The Oval Office today for The President to sign our bill into law.
It has also been a hands on civics class. We have made relationships within the MN members of Congress that I will treasure, and it has shown me and others what fine people we have representing us here in Washington. But at times we have also seen the ugly side of politics and those who have been elected to serve their constituites.
Senator Coleman has been a champion for our family and every family that has been touched by childhood cancer. He has been a powerful advocate for this bill, and the research we need to find a cure. His staff has also done an amazing job, without ALL of them past and present, we would not have been in The Oval Office today! I have been proud to be represented by such a caring man who is genuine, and who keeps his promises.
Twice while in Washington DC I walked into Congressman Tim Walz's office with no appointment and sat with the Congressman and knew that we had his full support. I also enjoy meeting with Chip in Congressman Jim Oberstar's office. He always shares insight with me that helps me put the issues we are dealing with in perspective, and I appreciate his knowledge and his insight.
Walz and Oberstar were joined by Congressman Collin Peterson, who I believe was the first member of The House to sign on as a co-sponsor, and Congressman Jim Ramstad, Senator Amy Klobuchar, Congressman Keith Ellison, and Congresswomen Betty McCollum, as original co-sponsors of the bill.
That leaves my district and Congressman John Kline, and Congresswomen Michele Bachmann as the only two representatives who were not co-sponsors of the bill. Many of you probaly recieved the same "feel good" letter we all have recieved about how Kline supports childhood cancer research. Many of us also know that if he truly supports this legislation he would be doing more than trying to look good by sending out letters to convince us of his support. He also would have know that at the time of his letter, July 18th, that the bill had passed in the Senate on July 16th. But this is another topic for another time.....in simple terms put your money where your mouth is Congressman Kline.
Thank you to Jimmie, Justin, Bryce, Ali, Carter, and Wyatt.
Thank you to Grandma and Grandpa Rech and for our family and friends who have supported us since this journey began.
To our Wilms family for sharing their children with us, for becoming some of the best friends and family we are blessed to have.
Special blessings to our Wilms Warriors, and our Wilms Angels, who are missed daily, for inspiring me with their courage and determination.
Thank you to CureSearch and its staff, to Jayne Jones, Rachel Gustafson, Andrew McKechnie from Senator Coleman's office, Kelly Cotter, and Brendan Devine for their efforts in advocating for this bill.
LASTLY THANK YOU TO EVERY ONE OF YOU WHO HAS CHECKED IN ON OUR FAMILY, TO THOSE OF YOU WHO HAVE BEEN EMPOWERED TO SEND THAT EMAIL, OR MAKE THAT CALL TO HELP US TO GET THIS BILL PASSED.
THAT DREAM GOT A BIT CLOSER TO REALITY TODAY WITH ALL OF OUR HELP.
More tomorrow....
Love,
Kris
Tuesday, July 29, 2008 7:00 AM CDT
WE HAVE BEEN INVITED TO THE OVAL OFFICE FOR THE SIGNING OF THE CONQUER CHILDHOOD CANCER BILL BY PRESIDENT BUSH THIS MORNING AT 10:55.
IT HAS BEEN A BUSY WEEKEND AND I WILL UPDATE MORE TONIGHT, WE HAVE MUCH TO SHARE WITH YOU!
WYATT IS EXCITED TO MEET THE PRESIDENT, AND GET A TOUR OF THE WHITE HOUSE. HE ALSO IS JUST A BIT EXCITED TO SEE SENATOR COLEMAN.
KRIS
Thursday, July 24, 2008 10:30 PM CDT
It has been an emotional and busy week here, but very quiet.
Wyatt and Carter are attending Camp Courage, near Maple Lake, MN for Hem/Onc patients and their siblings. HENCE THE QUIET....
We dropped them off on Sunday afternoon and Wyatt was excited to be going to Camp Tom! (Tom is Wyatt's nurse at clinic and took care of him when he was in the hospital)
We have lots of news to share and I will update over the weekend.
Below are the press releases from Senator Colemans office for the bill passing out of the House and the Senate that some of you were asking about. We are expecting the President to sign the bill!
There will be more to share next week.....
HOUSE PASSES COLEMAN LEGISLATION TO BATTLE CHILDHOOD CANCER
Senator calling on Senate colleagues to pass bill that will create national infrastructure to target childhood cancer, provide support to victims and their families
June 12th, 2008 - Washington, D.C. - The House of Representatives today passed the Conquer Childhood Cancer Act of 2007, legislation Senator Norm Coleman has been actively working to push through Congress. The bill, which Coleman introduced in March of last year, would provide $30 million per year through 2012 to establish special programs of research excellence in the area of pediatric cancers; create a national childhood cancer database; and increase information support for families affected by childhood cancer. There are currently 63 bipartisan cosponsors of this legislation, including the Senate Minority and Majority Leaders. The bill passed the House by a vote of 416 to 0 and now awaits action in the Senate.
“This House’s passage of this bill brings us one step closer to eliminating childhood cancer, the number one disease killer of children in America,” said Coleman. “Based on current rates, it is estimated that 1 of every 385 children in Minnesota will be diagnosed with a cancer before age 15. Behind this tragic statistic are the stories of brave children who are facing the fight of their lives every day, like my good friend and fishing buddy, Wyatt Rech – a childhood cancer survivor. This bill was influenced by brave little Wyatt and his family’s work to defeat this disease. I am encouraged by the overwhelming support of this bill in the House and I call on my Senate colleagues to follow suit and pass this critical legislation so children facing this perilous disease will have the support and the resources they need.”
More than 12,000 American children are diagnosed with cancer each year and more than 2000 more will succumb to this devastating disease. In Minnesota, about 160 children under the age of 15 are diagnosed with cancer and about 25 children die of cancer each year.
SENATE PASSES COLEMAN LEGISLATION TO BATTLE CHILDHOOD CANCER
Senators unanimously pass legislation that will target childhood cancer and provide support for victims and their families
July 16th, 2008 - Washington, D.C. - Senator Norm Coleman today announced the Senate passed the Conquer Childhood Cancer Act of 2007, legislation he has been actively working to push through Congress since he first introduced it in March of 2006. The bill provides $30 million per year through 2013 to establish special programs of research excellence in the area of pediatric cancers; create a national childhood cancer database; and increase information support for families affected by childhood cancer. There are 64 bipartisan cosponsors of this legislation, including the Senate Minority and Majority Leaders. The bill overwhelmingly passed the House last month by a vote of 416 to 0. The bill now heads to the President’s desk.
“The passage of this bill is a monumental step in the fight against childhood cancer,” Coleman said. “Childhood cancer tragically affects 1 in every 385 children in Minnesota, so it is critical for researchers, physicians and families to have the tools needed to confront this devastating disease. Behind this tragic statistic are stories of brave children like my friend and fishing buddy Wyatt Rech – a childhood cancer survivor, who had a large hand in this bill. After more than two years of pushing the Conquer Childhood Cancer Act through Congress, 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.”
More than 12,000 American children are diagnosed with cancer each year and more than 2000 will succumb to this devastating disease. In Minnesota, about 160 children under the age of 15 are diagnosed with cancer and about 25 children die of cancer each year.
Wednesday, July 16, 2008 8:07 PM CDT
WE ARE JUMPING FOR JOY!
SENATE PASSES COLEMAN LEGISLATION TO BATTLE CHILDHOOD CANCER
Senators unanimously pass legislation that will target childhood cancer and provide support for victims and their families
July 16th, 2008 - Washington, D.C. - Senator Norm Coleman today announced the Senate passed the Conquer Childhood Cancer Act of 2007, legislation he has been actively working to push through Congress since he first introduced it in March of 2006. The bill provides $30 million per year through 2013 to establish special programs of research excellence in the area of pediatric cancers; create a national childhood cancer database; and increase information support for families affected by childhood cancer. There are 64 bipartisan cosponsors of this legislation, including the Senate Minority and Majority Leaders. The bill overwhelmingly passed the House last month by a vote of 416 to 0. The bill now heads to the President’s desk.
“The passage of this bill is a monumental step in the fight against childhood cancer,” Coleman said. “Childhood cancer tragically affects 1 in every 385 children in Minnesota, so it is critical for researchers, physicians and families to have the tools needed to confront this devastating disease. Behind this tragic statistic are stories of brave children like my friend and fishing buddy Wyatt Rech – a childhood cancer survivor, who had a large hand in this bill. After more than two years of pushing the Conquer Childhood Cancer Act through Congress, 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.”
More than 12,000 American children are diagnosed with cancer each year and more than 2000 will succumb to this devastating disease. In Minnesota, about 160 children under the age of 15 are diagnosed with cancer and about 25 children die of cancer each year.
Kris
Wednesday, June 11, 2008 0:18 AM CDT
SCANS TOMORROW, NO SLEEP TONIGHT! Wyatt has scans on Wednesday at St. Paul Children’s. Of course I am sick to my stomach. We are hoping for clear scans and a uneventful day, with clear and precise answers. While I would have preferred to have had them done when we were not going to be leaving town, Dr. Messinger’s schedule dictated that they had to be done tomorrow. We already put them off so that we would be able to have Wyatt see his beloved Dr. Messinger.
It was a long fun weekend. We spent our weekend with the Brestel‘s in Lincoln, Nebraska, and attended the Third Annual CureSearch Milestones walk Saturday morning in Omaha, Nebraska for the second year. The total raised at the walk was $212,000.00 dollars which is more then double of what was raised at last years walk. 3 Wilms Tumor Teams were among the top 10 teams. Team Sadie Bug, a team walking in memory and honor of Sadie Livers, whose funeral we attended in February, was the number 1 team, raising over $28,000.00. What a wonderful tribute to such a beautiful little girl!
It was a beautiful day for a walk. We had the honor of meeting other Wilms Tumor families. Baby Blake, Brooke Brion’s beautiful baby brother, stole our hearts. Haley’s Helping Hands, friends of Angel Haley Mathis and her sister Hanna, once again entertained the younger children, and the number of people attending the walk was in the 1000’s. I had goose bumps when Theresa Livers told me Team Sadie Bugs total for their team, and I was saddened to see the number of children on stage had grown from last year as they were honored. Liz and Kelli, co sponsors of the walk did an awesome job, and childhood cancer awareness is growing.
It was also bittersweet for some families. 4 of the 7 Wilms Teams were walking in memory and in honor of a Wilms Angel. We attended all of there funerals since Wyatt was diagnosed. For Josh, Haley, Brooke, and Sadie’s families the day was not about raising money for research for a cure for there own child, but about working to ensure that other children diagnosed with cancer have a chance for a lifetime of happy memories.
It was wonderful to see all of the families that we have come to love. We have said for years that this journey through cancer has not always been about negatives. There is the family you are born into, and then there is the chosen family. We are very blessed to have chosen family that we have met during this journey, and honored that they have shared their children with us.
We made our famous Valentino’s trip on Saturday afternoon with Jess, Diane and Steve Brestel and enjoyed hanging out with them. Saturday night we toured some of the destruction from the tornadoes north of Lincoln and saw first hand all the damage that was done.
The weather seems to be dominating the news lately, Friday tornadoes touched down northeast of Park Rapids, MN near John and Linda Rohloff’s and the lake house which is where we spent Memorial Day weekend. Sunday a tornado was reported in Omaha. We are expecting more rain, and thunderstorms tomorrow with the threat of severe weather again here at home.
We have a busy week ahead. Getting ready to go to Washington DC for the CureSeach Reach the Day event. This year we are taking Ali’s beloved friend, and Wyatt’s girlfriend, Jess Brestel. Ali’s god mother Susie (SUSAN) and Grandma Rech.
This week the Conquer Childhood Cancer Act should pass on the House floor. It will be a significant milestone in what has been nearly 4 years of hard work since the act was introduced. The bill would have been voted on last week but Congresswomen Pryce’s father passed away. Our next hurdle will be to get the bill to the Senate floor for a vote.
Here are the links to the articles and pictures of Wyatt with Senator Coleman. Or you can google Wyatt Rech. We also are in a Norm TV video on Coleman for Senate.
Coleman for Senate Wyatt and I are in the Norm TV U Tube video
Politics in Minnesota
Echo press Click on Wyatt's name for picture
Duluth News Tribune Click on Wyatt's name for picture
Capital Chatter
And the transcript of the speech
Senator Coleman's speech
Please remember to leave a message in the guestbook, Wyatt enjoys trying to read messages from everyone. He has loved hearing from The Parker's!
See, you were right Jenny, if I update more often, I don’t need to write a book! LOL
Kris
Sunday, June 1, 2008 6:15 PM CDT
Where did the year go? Or how about the last 20 years? Jimmie and I will be celebrating our 20 year anniversary on June 11th. Wyatt will also be having scans that morning as well.
June 1st already and the kids last day of school was Thursday.
We were able to spend Memorial Day up north, Jim went up Friday with Wyatt and Carter, and I went up on Saturday afternoon.
It was so nice to be able to relax and get some fishing in while enjoying being with great friends. Wyatt and Carter had a wonderful time with the Rohloff kids. Josh, Steve, and Notasha are like older siblings to them, and Steve’s fiancée Emma has fit right into the mix as well. They spent lots of time fishing on the dock and in the boat with them. Josh also spent time in the boat teaching them Billy Joels Piano Man……imagine Wyatt and Carter singing that as they were trolling around the lake.
Sunday we attended a graduation party for Kyle and had a good time visiting with everyone. It was a wonderful accomplishment for Kyle, and we were happy to help celebrate the day with him.
On Friday, Wyatt and I were asked to join Senator Coleman in Rochester. Senator Coleman accepted his party’s endorsement for another Senate term at Minnesota’s Republican Party’s state convention at the Mayo Civic Center. When we were asked to attend we thought we were going to be included with a group of people onstage that the Senator has helped. Wyatt and I were the group. We were the only ones on the stage with him besides his wife Laurie and son Jake.
Senator Coleman lifted Wyatt up on a table next to the podium and Wyatt smiled that million watt smile, dimples and all.
Here is what Senator Coleman said when we went on the stage: “And now I want to introduce you to a special young man, my friend: Wyatt Rech of Montgomery, Minnesota. Come on up here Wyatt. He may be the most powerful person in the room, today. In my mind he is young Lindberg, and he inspires me with his belief in a better future.
When he was two it was discovered that Wyatt has a rare cancer of the kidney called a Wilms tumor.
Wyatt and his family didn’t just sit back, commiserate and take care of themselves.
What they’ve done instead is become crusaders to the millions of kids who have cancer all over the country. We spend billions on medical research each year but what they realized is: we have no special effort to help kids like Wyatt.
I’m helping Wyatt and his family change that. With their help I introduced the Conquering Childhood Cancer Act to help kids like Wyatt.
He had a big day when he turned six: a Senate subcommittee passed out the bill he inspired to have the National Institute of Health specifically expand childhood cancer research. So on his birthday, he gave families of the whole country a present. We’ve still got a ways to go before it’s the law of the land, Wyatt here isn’t taking no for an answer, are you buddy?
Let’s say thanks to Wyatt and his family for their incredible example of compassion and public service.
What’s so outstanding about being around young people like Wyatt is: they believe in miracles.
I love David Ben Gurion’s statement at the birth of the modern state of Israel: “Around here, if you don’t believe in miracles, you’re not being realistic.”
I am that kind of realist.”
All I can say is it was a very humbling experience. To be in the holding room with Senator Coleman, his wife Laurie, and son Jake as the Senator waited for the vote for the endorsement was something I will never forget, and hopefully something Wyatt will remember.
We had a wonderful time with the Senator’s staff and Wyatt has also really taken a liking to his son Jake too. Jake was roomates with Mike Kodada from Montgomery. Mike is a member of the Senator’s staff and escorted us on Friday making sure we were where we needed to be. It was a wonderful, unforgettable time.
WE NEED TO CONTINUE TO RAISE AWARENESS ABOUT CHILDHOOD CANCER!
And now an update on our bill, The Conquer Childhood Cancer Act. On Wyatt’s birthday, November 14, the bill was passed out of the Senate HELP Committee. A hold has been placed on the bill. We worked hard to secure 60 plus co sponsors (majority in the Senate) in order to position the bill for the next step in the process. Our hope is that our bill will be brought to the floor attached to other public health bills that have passed the HELP committee, have at least 60 co-sponsors and also have a hold on them.
We are moving faster on the House side. The Health subcommittee of the House Energy and Commerce Committee marked up HR1553 and the bill was passed out of the full committee. The leadership in the House of Representatives has announced that The Conquer Childhood Cancer Act legislation will be considered on the floor of the House on either Wednesday or Thursday of this week (June 4th or 5th). The bill will be considered on the "suspension calendar" which allows for expedited passage by suspending the normal rules governing debate. The suspension calendar is reserved for non-controversial bills that have strong bipartisan support. Two thirds of those legislators voting are required to pass a bill on the suspension calendar.
Our focus will then be to get the bill to a vote in the Senate.
This Saturday we will be again walking at The Milestones Walk in Omaha. MileStones - The CureSearch Walk for Childhood Cancer is a pledge walk that unites people in the fight to reach the day when every child with cancer can be guaranteed a cure. Its goals are to increase awareness of childhood cancer and to raise the revenue needed to support the life saving research conducted by the Children's Oncology Group.
To sponsor our family go to: http://host.curesearch.org/goto/wyattrech
Money raised benefits research at Children’s Oncology Group Hospitals across the US, including Children’s Hospital and Clinics in Minneapolis and St. Paul, The Mayo Clinic and The U of M Children’s Hospital.
It will also be a time to honor all children with cancer. Those in treatment, those in remission and our Angels. 4 very special Wilms Angels that were treated in Omaha will have family members walking in their memory. Angel Josh Brestel, Angel Haley Mathis, Angel Brooke Brion, and Angel Sadie Livers. We are looking forward to seeing everyone!
Kris
Thursday, March 27, 2008 11:17 PM CDT
BIG DAY TOMORROW. WYATT AND I ARE GOING TO INTRODUCE SENATOR COLEMAN IN ST. PETER AT ONE OF HIS STOPS ON HIS BRINGING MN TOGETHER TOUR.
WE ARE SO VERY THANKFUL FOR HIM BECOMING A CHAMPION OF CHILDHOOD CANCER, AND WYATT IS LOOKING FORWARD TO SEEING HIS FISHING BUDDY, AND PRESENTING HIM WITH A GIFT.
KRIS
Sunday, March 2, 2008 7:08 PM CST
Wow! March already. Where does time go.
Wyatt has a big day of testing on the 10th.
He will have testing done to see how his kidneys are functioning. As many of you know his right kidney is now bigger than his left. This is a concern because Wyatt's congential growth disorder has his left side being larger than his right side. Therefore his right kidney should be smaller because of the growth disorder and because the lower pole of his right kidney was removed when he had partial nephrectomies of both kidneys.
The kidney function tests will tell us if his left kidney is functioning at 100 percent. If the left kidney is not functioning at 100 percent than the right kidney could be larger because is is over compensating for the left kidney not functioning at 100 percent.
Have I confused you?
The alternative of the right kidney having some growth of nephrogenic rests is not one we want to have be reality.
He will also be having scans done and bloodwork. So please keep Wyatt in your thoughts. It is a stressful time for any family during these testing days.
We are working on projects for the CureSearch National Wilms Tumor Initiative that we co-founded with the Brestels. I will update as we move forward with those projects.
I also wanted to let everyone know that right now I have secured everyone from the MN delegation but Congresswomen Michelle Bachmann and Congressman John Kline as co sponsors for The Conquer Childhood Cancer Act. Congresswomen Betty McCollum ageerd to add her support last week. I also hope that Bachmann will add her support, I have been in contact with her office several times in the last two weeks.
I will provide a full update on the bill for everyone in the next week.
Tomorrow we will be tubing at Buck Hill with HopeKids, we haven't told Wyatt and Carter yet. Can you guess why?
Kris
Sunday, February 10, 2008 1:41 PM CST
We are on our way home to Minnesota from Nebraska. Rumor has it that it is extremely cold out at home, windchills -40 to -45 below zero with windchill warnings out for the entire state of Minnesota. A check of the weather and the roads this morning had me wishing for a vacation to some place warmer, or I guess I could settle for the above zero temps of Lincoln, NE.
So far the roads have been okay, although we did see a 12 plus car pile up just north of Des Moines.
Wyatt, Carter, Ali, Grandma Rech and I left late Thursday afternoon for Steve and Diane Brestels in Lincoln, NE. On Friday we attended the funeral of Sadie Livers, an 8 yr old from nearby Ashland, NE, who had Wilms Tumor. It was a heartbreaking service to honor a beautiful, brave hero. Please keep Sadie and her family, especially her twin Jack, in your thoughts and prayers.
We made our usual trip to eat at Valentinos on Saturday, and enjoyed just hanging out with the Brestels for a couple of days. Grandma Rech, Wyatt, and Carter became addicted to a computer game similar to I Spy, and Ali and Jess got in some quality girl time.
We are hoping to make a family trip up north this weekend to get some ice fishing in. Carter got quite a bit of ice fishing stuff for his birthday, and can’t wait to try it out. We can only hope for weather like we had last year when we were out on the ice in t-shirts.
Ali will be seeing Dr. Mendelsohn, Wyatt’s genetic Dr. in 2 weeks to see if she also has BWS. We have noticed a leg length difference, and other subtle similarities to Wyatt, and want to have them addressed.
Wyatt will be having scans in March. He will also be having some kidney function tests to see if perhaps the reason why the right kidney is larger than his left is because the left kidney is not functioning at 100 percent therefore making the right kidney work harder. If that is the case it may explain why he has had growth of the right kidney and give us peace of mind.
Wyatt was excited to receive a package in the mail the other day from Senator Coleman’s office, including buttons, stickers, and a couple of t-shirts to help support Senator Coleman’s re-election to the Senate. He is proudly sporting 2 buttons on his back pack, and we will be proudly voting for Senator Coleman next November. Let me know if you would like a button, sticker, or information.
Keep warm!
Kris
Monday, February 4, 2008 6:49 AM CST
Another Beautiful Angel.
Another Wilms family devestaded by the loss of their child. A lost daughter, a lost sister, a lost twin.....
Please keep Sadie and the Livers family in your prayers. Sadie earned her wings last night. Please also keep all of our Wilms families in your prayers. We have many children who have relapsed right now. And with the loss of another Omaha child, this will be hard on families who have walked this very path.
The Livers family was the top Wilms Tumor Iniative team at the Omaha Walk last June. Sadie was 8 years old.
www.caringbridge.org/visit/sadielivers
We found out last night that Wyatt's picture will be in MN Hockey Journal in an article about Hope Kids. I will update with more about the article when I learn more.
Kris
Monday, January 7, 2008 8:43 PM CST
Wow, it has been a very long time since I have been here to update. For those of you who have been inquiring updating has even made it on my top 10 resolutions for the Year 2008.
Wyatt is sound asleep on the couch. He has not been feeling well. Last night he was up every 2 hours to throw up. Today he has not thrown up nearly as much, but he has not had much to eat or drink either. He has been able to keep down a little gingerale. Poor guy. He is miserable with a headache and a fever too.
He loves school. He is so social, and loves being with his friends.
We spent the weekend in Storm Lake, IA at Kings Pointe Resort with Steve, Diane and Jess Brestel. We had a great time in the waterpark on the waterslides and just hanging out. Saturday night we went bowling. Wyatt has already asked when we can go again. Jimmie went with us, he is not one for our famous road trips, but he had a good time, and maybe we can get him on another one soon.
Our Christmas was good. Busy. Too busy. It seems like this past year went by so very fast. There are so many things that we have yet to do. I do think that we are getting better about living in the moment, and I must say that I have some lofty goals for 2008.
One of those lofty goals is getting the Conquer Childhood Cancer Act passed. Next week I will be flying to Washington DC for team leader training for CureSearch, and to meet with Minnesota's congressional representatives.
Here is the link to the article that appeared in the Minneapolis Star and Tribune.
http://www.startribune.com/politics/national/congress/11919876.html
Cancer is again taking its toll in our Wilms community. Please keep all that are experiencing the wrath of cancer, especially Sadie, in your thoughts and prayers. It is so difficult to spend the holidays without a child that you have lost.
Much love to all of our family and friends, may peace and happiness abound in your lives in 2008.
Love,
Kris
Friday, October 5, 2007 7:54 AM CDT
Good Morning.
Life has been very busy. You would not believe that right now all is quiet in the house. Justin is at college. He will be coming home tonight although we have not shared that information with Wyatt as he has a one track mind and no one wanted to hear, "is he home yet, is he home yet?" Wyatt sure misses him. Bryce and Ali are at school, and Carter and Wyatt just got on the bus to go to school.
Wyatt was excited about riding the bus and school, but 'The Fishing Competition' with Senator Coleman on Lake Minnetonka the first weekend school was in session was far more important than the first days of school.
Senator Coleman and Wyatt both share the love of fishing. On our visits with the Senator they usually share fish stories and Senator Coleman has shown Wyatt pictures of some of the fish he has caught. The Senator promised Wyatt a fishing outing and we met him at Lake Minnetonka to go fishing with a guide, Lynn, who Wyatt fell in love with too.(Very nice lady with big bass boat that Wyatt gets to start, turn off, help drive-fly-across the lake. No brainer, right?)
Wyatt fished for pan fish with his spiderman reel that Lynn provided on wax worms, otherwise know as "buggies" by our kids. Senator Coleman fished with leaches for the larger fish, his favorite being walleye. Wyatt, with the help of Jimmie was pulling in small sunfish, some no bigger than potato chips, and letting Senator Coleman know that it wasn't the biggest fish caught who would win, but he who caught the most.
Wyatt won the competition, 19-2 1/2, Wyatt missed counting a few of his catches, and he felt that the Senator should get credit for several of the weeds that he landed in the boat.
We ended our morning with Wyatt and Lynn piloting us across the lake at 50 plus miles an hour. That was the icing on the cake for the trip for Wyatt.
Senator Coleman was thankful for a relaxing morning, with no work, and did not seem to mind. There was also talk of a rematch on a different lake.
As many of you know Wyatt and Senator Coleman are good friends, having met 3 years ago in Washington DC when we met with him to ask for help in fighting childhood cancer. Since then Senator Coleman has become a champion for children with cancer. He has co-sponsored The Conquer Childhood Cancer Act. The bill, which has bipartisan support of the Senate and the House, is nearing a critical hurdle.
Passing the bill in this session of Congress is very important. The fear is that the bill will get lost in the elections next year, and with the cuts which have impacted 50 percent of the clinical trials for this year, the time to pass the bill is now.
Additional sponsors in the House and Senate have been gained, but we can do better. That is where all of you can help. Here is the link to TAKE ACTION. http://capwiz.com/curesearch/home/ This page allows you to send your member of Congress a letter asking for their support of the bill. It is very easy to do, you enter your zip code, and follow the prompts to include the messages in the email. The whole process will take you about 5 minutes, and could help us save the lives of children fighting childhood cancer.
For those of you living in Minnesota I can tell you that Senator Norm Coleman is an original co sponsor of the bill, Senator Amy Klobuchar recently gave her support of the bill and has since signed on as a co sponsor.
On the House side we have much work to do. Collin Peterson, 7th district, is the only member of the House to sign on as a co sponsor of the bill. He signed on after we met with his office in June.
John Kline, 2nd District, our representative, will not sign on as a co sponsor. He supports no disease specific funding, and considers childhood cancer to be a special interest group.
He recently did sign on as member supporting a resolution stating that childhood cancer is the number on disease killer of children. A resolution is a non binding statement of fact. It simply brings attention to the issue of childhood cancer. I believe that Congressmen Kline signed onto the resolution to make those of us who have asked him to sign onto the bill think he is doing something for us. The reality is that HE HAS NOT, he has the opportunity to do something more meaningful, and "put his money where his mouth is" by supporting the Conquer Childhood Cancer Act which will fund the research needed. Remember that when you head to the election booth to vote.
That leaves 7 members of the House not signed on.
Tim Walz 1st District
John Kline 2nd District
Jim Ramstad 3rd District
Betty McCollum 4th District
Keith Ellison 5th District
Michelle Bachmann 6th District
James Oberstar 8th District
As I work to add these members I may contact families from the districts to share their stories. If you know that your member has not signed on, and you would like to help, please contact Jim or I.
I never would have thought that by sharing our story we would have gained the support of Senator Coleman to truly make a difference for children like Wyatt, and all of the other families affected by childhood cancer. Please help us by Taking Action, and forwarding this email to your family and friends.
This past weekend Wyatt, Ali and I spent with the Brestels in Kansas City for our Nebraska daughter, Jessica's birthday. We went to Worlds of Fun on Saturday and spent 13 hours in the park.
Worlds of Fun has a Halloween Haunt event that we went to last year. Worlds of Fun is transformed during the Halloween Haunt as low level fog creeps onto the midways at night and 7 haunted attractions including our favorite, Camp Gonnagitcha Witchahatchet open.
We had a good time. Being that the haunted attractions were not recommended for small children we did not take Wyatt through Camp Gonnagitcha Witchahatchet the first time. Wyatt and I made our way to the end of the trail and waited for Steve, Diane, Jess and Ali to come out. We had a blast watching as people made their way to the exit. Most of them so happy to be nearly out of the scare range ignored the garbage can and the man sitting behind it with a lid over his head as they quickly made their way to the exit. We were nearly crying at times watching him scare the wits out of many who tryed to exit.
We went to other haunted attractions and Wyatt made his way through them with us. Jess and Ali screamed far more than he did.
Sunday we ended our day shopping for a homecoming dress for Jess. Wyatt thinks Jimmie should go sit on Jess's doorstep this weekend with his shotgun to keep the boys away from her.
Our drive home got a little complicated by storms and tornados in Iowa, but we made it home safely.
Please take the 5 minutes and follow the link to let your members of Congress know that childhood cancer is the number one killer of this countries children. Together we can make a difference,
Kris
Thursday, August 30, 2007 9:57 PM CDT
Our lives have been very busy. We have had major milestones accomplished in our household, moments of devastation in our state, cancer reality checks in our lives and for those in our Wilms Community, and rays of hope in our advocacy.
As I type Mom Rech is piloting us home from Cedar Rapids, Iowa where we have spent the last 2 days at the first Presidential Cancer Forum sponsored by the Lance Armstrong Foundation.
Many have asked us about the bridge collapse in Minneapolis. While we do not travel that road on a frequent basis, it will have a very lasting impact on our state. We were in attendance with Hope Kids at the Twins game against Kansas City at the Metrodome, 2 miles from the bridge collapse that night. Thankfully we rode the light rail to the game that evening. Not because we would have been on that stretch of interstate, we live south of the Twin Cities, but because the logistics of getting home would have proved very difficult. This is why the Twins organization chose to play the game instead of canceling it and putting 20,000 fans on the city streets when emergency crews needed the streets clear to deal with the devastation.
We had already made our way into the Metrodome, and thought what we had heard when the bridge collapsed was thunder. Our thoughts are with the families who were impacted by the collapse.
We also have had a large amount of rain which has caused us to have to deal with water in the basement on several occasions. We have not had nearly the amount of rain as the southern portion of the state where we have relatives and where Justin is attending college.
Yes, that’s right; Justin is at Winona State University as of August 21, 2007. He is going to school for Sports Medicine/ Athletic Training. We moved him into the dorm, and saw some of the damage done from the flooding and the rain first hand. Wyatt sure misses him.
Wyatt has been…….well what can I say except Wyatt. He continues to touch the lives of others and those we meet in our advocacy. He also never ceases to amaze us with his smile and his words of wisdom that are far greater than a 5 year old, soon to be going to kindergarten.
Having grown up going to the Dr. and having multiple forms of testing done for most of his life, Wyatt has no idea that he or that his incisions are rare. His two battle wounds from his neprhrectomies, and his port have become topics of conversation between him and the neighborhood kids as they have played shirtless in the many 90 degree days we have experienced.
He was walking by the TV in the living room and heard on TV that someone was a survivor. He told me nonchalantly that he was a survivor too. Not sure if he knew what it meant to be a survivor I asked him what that meant, and he replied; “I get to live more.”
I get to live more…..there it is, a statement from a child of 5 who seems to have lived far longer in life experiences. He just has a way with people, you go into an elevator and people talk to him, ride the metro and the metro police strike up conversation with him. Everyone knows him, and he shares that smile and they melt.
Tomorrow we will be spending the day at Childrens in St. Paul for a quick pre-op, MRI, chest x-rays, blood work and urine cultures, and his appointment with his favorite Dr. Messinger. We are hoping to not have to sedate him for the MRI, but truly that might not be such a bad thing if they can do his draws while he is sedated and update his shots for school. He calls his blood draws “shots,” and the “shots” are far worse than anything else he goes through.
Keep him in your thoughts and prayers tomorrow, August 31, 2007. Why I made his appointment on a Friday before a holiday is beyond me. For those of you who have thought I needed my head examined, this proves you are correct….LOL Hopefully we will have a kindhearted radiologist in the building who wants to spare a worried Mother’s peace of mind.
He has been well except for a couple of days with tummy aches and high temps. The first time it happened and he sat and cried with a 104 temp it took great will power not to haul him in and demand scans. What a reality check. Your heart is in your throat, you are worried sick, and it takes you back to cancer 101. Even when you do not have cancer physically in your body, it never leaves you.
We have been very busy advocating. We were honored to be asked to be at a check presentation from Potbelly Sandwich shops for a donation to CureSearch in the IDS tower in Minneapolis on August 22, 2007. Dr. Messinger joined us for the presentation.
It was not a very big deal in the store itself, but because Senator Coleman took the time to write the CEO of Potbelly to thank him for his companies’ participation, we are hopeful that they will do this nationally next year.
Grandma Rech and I attended Lance Armstrong’s Livestrong Presidential Cancer Forum in Cedar Rapids, Iowa. The LIVESTRONG Presidential Cancer Forum offers a unique opportunity to the 2008 presidential candidates to go on record with their strategy for fighting cancer, a disease that kills 560,000 Americans every year. The number 1 killer in our country.
Monday was the Democratic Forum. Each candidate got 3 minutes to make an opening statement about what their plan is to combat cancer were they to be elected President. Following that statement they then spent 15 minutes answering questions posed by Lance, his co-host Chris Matthews from the show "Hardball", as well as questions taken from the internet at MSNBC.com. All of the major candidates were invited to be a part of the
forum, those attending were Senators Hillary Clinton and John Edwards, Governor Bill Richardson, and Congressman Dennis Kucinich.
On the second day only two of the eight invited Republican candidates attended. Arkansas Governor Mike Huckabee and Senator Sam Brownback from Kansas were in attendance.
Senator Sam Brownback sat down at the reception and ate with us. We also got to meet Doug Ulman, LAF President, and talk with the LAF legislative director and talk about the Conquer Childhood Cancer Act of 2007. I was happy to hear that the foundation has sent a letter of support for the passage of the bill, and that they are willing to help us if needed.
Please keep all those dealing with relapse scares in our Wilms Communities in your prayers, especially Bon Bon. And we are also hoping for the safe arrival of Baby Brion, and Baby Zickrick!
Happy Belated Birthday Steve and Senator Coleman! Steve, your not off the hook, we are thinking of a PERFECT gift for you...........
Kris
TELL CONGRESS TO MAKE CANCER RESEARCH AND PROGRAMS A PRIORITY!
The House-passed version of the Labor Health and Human Services and Education Appropriations bill (LHHS) for Fiscal Year 2008 provides a mere 1.9 ncrease for the National Institutes of Health (NIH) and only a 1.5 ncrease for the National Cancer Institute (NCI). The Senate Committee version of the bill is slightly better, but neither will allow us to make true progress in cancer research. The cancer community, as well as a bipartisan group of lawmakers, support an increase of 6.7 or the NIH and the NCI.
Members of Congress are home until Labor Day, so now is a perfect opportunity to remind them that their support is critical. Please tell your Members of Congress that we need to do better when it comes to cancer research and programs.
Contact your Representative and Senators today and tell them to insist that the House and Senate pass a bill that includes a 6.7 ncrease for NCI.
Monday, June 25, 2007 10:33 PM CDT
Washington DC Trip 2007
Year 3 Day 4
We are staying at a Holiday Inn near Andrews Air Force Base in Camp Springs, MD. It is about 20 minutes into DC on the Metro, which is just about 5 blocks from our hotel. We were able to stay 3 days at this hotel for what it would of cost for 1 night and parking at the hotel that the Reach the Day is held at.
We were off early to the Metro, which is one of Wyatt’s favorite past times in DC. It already was warm and humid. Grandma Rech was not feeling well, so her and Carter stayed at the hotel and slept till nearly 11. This was Desiree’s first trip to DC and I have only seen a few of the sights even though I have been in DC many times now. Last year Grandma Rech took the kids to sight see while I was meeting with members of congress.
Today we saw the Lincoln Memorial, Washington Monument, The National Mall, The World War II Memorial, The Vietnam Veterans Memorial, The Korean War Veterans Memorial, The White House, and The Old Post Office.
We walked the entire way and Wyatt did great with a little help from Steve putting him up on his shoulders and me carrying him a little bit. He enjoyed seeing the ducks and geese in The Reflecting Pool, but most of all he enjoyed being with the Brestels and Desiree and Ali.
We were to the reception for Reach the Day at 5:00 pm. It was great to see all of the families that we have come to know over the 3 years we have been attending. The kids were waiting to see Vince, Nancy and Nick, and of course Tim and Donna (aka Bling, Bling). Nick had an important baseball playoff game and was not able to attend; we hope he won his game.
As we were eating our dinner we were joined by Senator Coleman and Rachel Gustafson. For those of you who know Wyatt, you know that he remembers EVERYTHING! He remembers being in Senators Coleman’s office and seeing pictures of him fishing, and talking to him about fishing last year. He still has the truck that Senator Coleman gave him the first year we were in his office, and knows where it came from.
Wyatt does not fully understand the impact he or Senator Coleman is making in the fight against childhood cancer. He knows him as a friend, and also knows that Senator Coleman is helping him and his other friends who have cancer.. We are thankful to have him working with us and leading the way to finding a cure for childhood cancer.
I have always been impressed about how genuine Senator Coleman is with Wyatt. We would have seen him tomorrow at the press conference, but he took the time to come see Wyatt at the reception tonight as well.
After the reception we headed up to the pool at the Holiday Inn Capital. The pool is located on the roof, and last year they had a bunch of rabbits on the roof in the flower beds. They were not there this year. The kids swam and we had the opportunity to have adult conversation. The highlight of the pool adventure was when Vince made his appearance and the group cannonballs began.
As we were walking to get on the Metro to go back to our hotel Wyatt told Grandma he saw a mouse and it was this big, well it was not a mouse, and neither were his friends. They were rats!
The kids did an awesome job for being out and about for the entire day with the temperatures in the high 90’s and the humidity. Even Wyatt was still awake when we got back to the Metro near our hotel.
Our day begins early tomorrow. Breakfast begins at 7am at the hotel in DC.
Kris
Washington DC Trip Year 3
Day 3
Well I must say that we like adventure. LOL The ride to DC was one that I do not think will be forgotten. After a hot evening in a hotel room with no air conditioning in Ohio, we headed out to do some shopping before hitting the road to DC.
Have you ever been shopping with a 13, soon to be 14 year old girl looking for a new swimsuit? Let me tell you that 3 hours later and we were on our way finally.
An accident at the I 70 / I 470 split going into West Virginia from Ohio brought traffic to a standstill. We like many others decided to get off the highway by backing up the on ramp and taking another route. BAD CHOICE!
2 hours and 4 carsick children later and we made it to I 74 in Morganstown, West Virginia and we were on our way to DC. On the way we encountered winding mountain roads, with hairpin turns, one lane bridges, and roads where we were unable to go faster than 35 miles an hour.
As soon as we got to the hotel we were greeted by The Brestel family, Steve, Diane, Jess and cousin Brianna, from Lincoln, Nebraska. It has only been 2 weeks since we were in Nebraska for The Milestones Walk, but the kids were excited to see one another.
No sightseeing today, but tomorrow we will be off early to tour the monuments. Steve likes to get an early start so we will be leaving for the metro, which is 5 blocks from our hotel, by 8 am. We have to be at the reception for Reach the Day at 5 pm. It has been in the 90’s and tomorrow the forecast is also for it to be just as warm.
The kids are bummed that the pool here is only open from 2-8 pm. We may not be spending much time in it with our schedule for Reach the Day.
They want to swim at the Holiday Inn where the conference is being held tomorrow night after our meeting is over. They are looking forward to seeing other families that we have met from previous years and events. The pool there is located on the roof and last year they had quite a few bunnies living up there.
Time to get the monsters to bed………….
Kris
Washington DC 2007 Year 3
Day 2
We had breakfast, checked out and were at Grants Farm which is owned by Anheuser-Busch, by 10:00 am. As you enter Grants Farm you ride a tram through a wildlife preserve which is home to many animals including rare David deer that are on the extinction list, ducks, geese, trumpeter swans, ostrich’s, antelope, and spotted donkeys, affectionately named Moe, Curly and Larry. Wyatt used his full range of sound effects to load his gun and shoot the ducks and geese. (Hmmmm, I wonder where he learned this from? Just a hint: they share the same name and birth date) Being that some of the animals are endangered species and not animals from MN that we hunt, I am sure we had a few people who wondered just what type of parent I was.
The kids fed (or maybe I should say they were attacked) by the goats even before they got through the gate. Wyatt was not pleased with the goats jumping on him, scratching him, and chewing on his clothes as he tried to enter the pen with the baby bottles they use to feed them. Ali and Desiree quickly rescued him, but not before he started crying and wanted out, and nothing to do with the goats. Carter, Ali and Desiree sure had fun feeding them and Carter even brushed some of them.
We saw some beautiful birds, two tortoises and made our way over to watch the elephant encounter. As we were standing on a curb overlooking the elephant show watching Mickey (they have 2 elephants named Michelob and Budweiser) Desiree blacked out, falling straight back hitting her head on the asphalt and was unresponsive for several minutes. Jim’s mom who is a LPN talked to her and she was able to tell us where she was, but did not know what happened.
The EMT’s and paramedics placed her on a back board and in a neck brace and she was taken by ambulance to a local ER where she was evaluated. Jimmies Mom stayed with the kids at Grants Farm while I rode with Desiree in the ambulance. The GREAT news was that they think it was an isolated incident brought on by stress, and the rough trip the day before.
Some 4 hours later we were on our way back to Grants Farm for a very brief visit with the Clydesdales. We visited the Arch but because of the long lines due to the Cardinals being in town we chose to hit the road to Ohio without riding the tram.
The kids did pretty well, Desiree was sick again right after we left Grants Farm on the way downtown, but after a dose of Dramamine she did great the rest of the way.
We checked in rather late, or maybe I should say early. We drove through monsoons and with the time change it was 1:30 in the morning when we checked in.
Tomorrow we will be in DC and plan to make the rounds to the monuments and do some shopping.
Miss everyone and the dogs too.
Kris
Saturday, June 23, 2007 0:08 AM CDT
Washington DC Trip 2007, Year 3
Good evening, almost morning.
It has been an eventful day, and we are in St. Louis ready to hog tie two small boys into bed so we can get an early start. They are full of energy, and excited about the trip ahead.
We hit the road this morning about 10:15 on our way to Faribault to pick up Grandma Rech. Ali's girl friend Desiree was car sick before we made it to Faribault. She was sick at least 6 more times before we got some Dramamine into her somewhere in Iowa. We had frequent pit stops to empty her bucket for the first leg of our journey.
We also had a visit from a State Trooper 2 miles outside of Faribault and collected a warning ticket for speed to add to our scrapbook. LOL
Besides rain showers dampening our ride and postponing our picnic till tomorrow we had smooth sailing.
We toured Hannibal, MO. Hannibal is the boyhood home of Mark Twain. We rode The Mark Twain Clopper, a horse drawn narrated tour through the Historic District near the Mighty Mississippi. Wyatt was our guest driver for a portion of the ride. We also visited the bluffs, or Lovers Leap overlooking the city, and the river.
Tomorrow morning we are off to ride the tram on The Arch and visit Union Station. We are going to Grant's Farm, the 281-acre ancestral home of the Busch family, located just south of the city of St. Louis. The Farm is home to more than 1,000 animals representing more than 100 different species from six continents. Grant's Farm, operated by Anheuser-Busch, Inc., has been a St. Louis tradition for over five decades.
The Farm takes its name from our 18th President of the United States, Ulysses S. Grant. In the 1850s, Grant founded and farmed a portion of the 281 acres. Today, this land is home to Grant's Farm and is preserved as a living symbol of the Busch family's love for animals and Anheuser-Busch's commitment to wildlife conservation and preservation. and The Budweiser Clydesdale Stables which are home to approximately 35 Clydesdale mares, stallions and foals. Anheuser-Busch has one of the world's largest herds of Clydesdale horses and owns approximately 250 nationwide. Grant's Farm, where up to 15 foals are born each year. is proud to be one of the breeding operations for the world-famous Budweiser Clydesdales.
We will be just outside of Dayton, Ohio tomorrow night after a 5 hour drive. We will be joined by the Brestels from Lincoln, NE. Sunday evening we will be in Washington DC.
Monday and Tuesday we will be on Capital Hill with all of the other CureSearch families advocating for childhood cancer awareness and federal funding for research. We are excited to see our favorite families, and Wyatt is ready to hear and swap fish tales with Senator Coleman.
Senator Coleman has made plans to be at the press conference and at the rally on Tuesday with us.
Bling, Bling call me Sunday, Darby, the girls are wondering who they will push into the pool without you being in DC. Gavin you will be missed in the pool adventures and Vince, I hope your ready for pool games, take 2. I wonder how many rabbits are on the roof this year?
I will leave you with some of Wyatt's parting words. Grandma said she was going to DC, and she was bringing a banana. Wyatt said he was going to Las Vegas (not sure how he referenced Las Vegas, we have never been there) and he was bringing Dodge Balls, and uniforms, and a hamburger to eat.............
Kris
Saturday, June 9, 2007 10:17 PM CDT
My heart is heavy. Beautiful Rachel Hansen who lives minutes away from us in Webster earned her angel wings Friday morning. Rachel has been fighting Ewings Sarcoma since the age of 2. Please keep her family in your thoughts and prayers.
Rachel
I will update and share pictures about the walk in Omaha Monday or Tuesday.
Kris
aka
Secretary Jess.
Sunday, April 22, 2007 2:01 PM CDT
My heart is heavy. Beautiful Rachel Hansen who lives minutes away from us in Webster is not doing well at all and needs all of our prayers. Rachel turned 7 on Friday and has been fighting Ewings Sarcoma since the age of 2. Rachel
I have followed Rachel since I was introduced to her family shortly after Wyatt was diagnosed with cancer in 2004. Her Mom, Jodi, was the one who first enlightened me about the American Cancer Society's lack of funding (less than 1 percent of all revenue goes to fight childhood cancer) for children with cancer and this information led me to become an advocate for CureSearch. For those who have followed our family you know how this has greatly impacted our lives.
Please pray for Rachel, her parents, Jodi and Mark, and her 2 brothers, Blake and Lance.
Kris
Sunday, March 4, 2007 7:49 AM CST
WOW, IT HAS BEEN FOREVER SINCE I UPDATED!
As always, we have been extremely busy here. Never a dull moment.
It is with mixed emotions that I can now report that we are done with basketball. Justin, Bryce and Ali are all finished with their seasons. Each of the kids had challenges this year to deal with on their respective teams. The varsity lost a close game last night in sections. Bryce has dressed for varsity the last two games. It is a sneak peak of the future, although we would like to see him stay with his teammates and watch them move up as a group.
The sadness comes from knowing we are inching closer to graduation for Justin, and that we attended his last basketball game last night.
On the other hand baseball is just around the corner, and Justin can not wait for the season to begin. He plans to begin throwing after school next week. They should have a great team again, and we are excited to see them play.
Wyatt had scans, an echocardiogram, and clinic appointments on the 15th. His kidneys have stayed about the same and no other new problems were noted on his scans and chest x-rays.
We saw the pediatric cardiologist, Dr. Pyles, who has seen Wyatt since his transfer to the NICU the day of his birth until he was released from his care when 2 echocardiograms confirmed his ASD had indeed closed in 2004. He is one of my favorite Drs. He too believed that by looking at the last 2 chest x-ray's, one taken on the 15th and one taken approx. 6 weeks earlier, that they were indeed suspicious, and that Wyatt's heart did look enlarged. But the echocardiogram did not show that Wyatt's heart was enlarged. It is on the upper measurements of normal, but not enlarged. The echocardiogram did however show a murmur in the lower chambers of Wyatt's heart that is not serious.
Our game plan is to continue the course. Frequent screenings, blood work at the next visit and a trip to see Dr. DeBaun at St. Louis Childrens in April.
Wyatt and I will be traveling to Washington DC this week for the reintroduction of the Conquer Childhood Cancer Act. Tenatively it is set for March 8th. The Conquer Childhood Cancer Act will be reintroduced by Senators Norm Coleman (MN), Jack Reed (RI), Congresswoman Deborah Pryce (OH) and Congressman Chris Van Hollen (MD) This legislation would provide $20 million annually over five years to fund research and information services to families affected by childhood cancer.
When myself and other Team Leaders from other states met with our members of congress at Team Leader training in January we asked members of Congress to support $7 million in federal appropriations for fiscal year 2008 to support childhood cancer research. In addition, we asked Congressional members to support and co-sponsor the Conquer Childhood Cancer Act. What has happened since our 45 Team Leaders made 250 visits with congressional and staff members?
63 congressional members/staff gave firm commitments to submit appropriations requests
81 congressional members/staff agreed to co-sponsor the Conquer Childhood Cancer Act when it is re introduced in the coming weeks
More than 2,700 letters have been sent to Members of Congress from patients and families across the country urging their support of the Conquer Childhood Cancer Act
We expect many Members of Congress to add their names as co-sponsors of this bipartisan legislation.
The life-saving progress in childhood cancer research is being jeopardized by dramatic cutbacks in federal funding. Our leading medical researchers tell CureSearch that these proposed funding cuts will unquestionably endanger many planned and existing clinical trials.
Here is the budget reality: Cuts proposed for the National Cancer Institute (NCI) will reduce its funding for clinical cancer research conducted by the Cooperative Groups including the Children’s Oncology Group (COG) to an all-time low. This continuing decline has occurred over three years and shows no sign of abating. For the first time, the COG will put 20 studies, 50 percent of those planned, on hold and has been mandated by the NCI to decrease enrollment in new clinical trials by more than 400 children.
The loss of one more child is unacceptable.
How can you help? A Dear colleague letter is being circulated by the 4 members introducing the bill asking for members to add their name as a co-sponsor of the bill. By taking the time to enter your zip code in the box above this journal you can send a email to your members of congress asking them to support the Conquer Childhood Cancer Act.
You can also call your members offices and ask for their health legislative aid and tell them you would like to see your representative sign on as a sponsor of the bill.
WE NEED YOUR HELP! PLEASE JOIN US IN THIS FIGHT.
As we learn more about the introduction I will update you.
Love,
Kris
Friday, January 12, 2007 9:35 AM CST
2007
Whew, where has the time gone? Many of you know that we are in full fledge go, go, GO mode here in our household.
Today we celebrate Carter's Birthday. 9 years old. It is still so easy to picture his big cheeks and remember hearing him breathing in the Special Care Nursery after he was born. Not to mention the fact that he was too big for the isolette.
This morning I took him to Frankes Bakery and he got 24 donuts for his class. Going to Frankes, who used to be our next door neighbors, is a treat in itself. He was very excited about sharing with his classmates.
Basketball season is in full swing. Ali, Bryce and Justin are all playing. Tonight is Parents Night for Justin and Bryce and another "final" event with Justin as he moves closer to graduating in May. It is bittersweet.
Ali is also in JO volleyball which meant Sunday was spent in Burnsville at the wharehouse watching her play. They won all their matches, but at times had us on the edge of our seats.
Wyatt is well.....Wyatt. That fun loving little boy who loves to see his siblings and their friends at all the games, and talk on the phone.
His scans showed a minimal growth on the right kidney. We will continue to monitor him closely with increased scans.
Dr. Messinger thought he looked rather blue around the lips and checked his oxygen saturation, which was okay. There is also some question as to a murmur and his chest xray indicated that is heart size was slightly large.
Wyatt was born with an atrial septal defect of significant size 6-7 mm. Atrial septal defect is an abnormality of the upper chambers of the heart (atria) where the wall between the right and left atria does not close completely. This defect was found in the NICU and was followed closely by a pediatric cardiologist, Dr. Pyles, until August of 2005, when after 2 echocardiograms it was felt that the ASD had closed on its own. We jumped for joy when we were told this because we were fairly certain Wyatt was going to need surgery to close the ASD, and Wyatt no longer had to be followed by a cardiologist. After years of joking that Wyatt had every "ologist" in the book we were indeed saying goodbye to one.
Long story short. Wyatt needs an echocardiogram done, and Dr. Pyles will be added back on our "ologist" list. It could be the ASD, could be something new, it could be a product of the chemotheraphy. We just need to have the echo done and go from there.
After several conversations today it appears that it may be possible to see many of the Beckwith registry Drs in st. Louis with some planning. At this point I believe having Wyatt evaluated by them would be a great plus.
I will be leaving for CureSearch Team Leader Training in Washington DC on Monday and returning Thursday. On Wednesday we will be meeting with members on Capital Hill. We have new faces from Minnesota on the hill, so it will also mean meeting new staffers and members.
I spoke with Rachel from Senator Colemans office yesterday as well, and hopefully I will be able to meet with Senator Coleman during my visit. The Conquer Childhood Cancer Act that was introduced last March by Senator Coleman will need to be reintroduced this spring after some language changes are made. I will learn more next week and let you know about the bill and hopefully we will be adding more members from Minnesota as co sponsors of the bill.
I am also hoping DC is warmer than the weather they are predicting for us here in Minnesota!
Have a good weekend.
Kris
Thursday, December 7, 2006 2:27 PM CST
BRRRRRRR IT IS COLD OUT!
As you probably figured out from my last entry, I lost a good portion of it. Sorry. To make matters more difficult is just finding the time to sit down and update. Life is busy here, but most of you know that about our family.
It is a difficult time of the year for me personally. Thanksgiving and Christmas will always be reminders of our two precios angels in heaven. Knowing that they are joined by Angel Josh Brestel, who passed away on December 1st, 2004, and Angel Brooke Brion, who passed away December 8th, 2005 makes my heart heavy as well. And of course thoughts of Josh and Brooke make you think of Haley Mathis, Brooke Clemons, and Kyle Reed. All Wilms Warriors who took a piece of my heart with them to heaven. Please keep all of these families in your thoughts and prayers.
This weekend we will be making our 2nd annual trip to Lincoln, Nebraska to celebrate Sweet Josh's Birthday with his family and friends on Sunday. Steve and Diane host a birthday safari and a toy drive to honor Josh. They will be delivering the toys to Childrens Hospital in Omaha and St. Elizabeth Hospital in Lincoln on December 13th, Josh's Birthday. Thank you to everyone who has donated toys that we will be bringing with us.
We are looking forward to the party, to seeing the Brestel's and seeing Angel Haley Mathis' family as well.
On November 4th, Ali, Wyatt and I made a short trip to Lincoln and Panama Nebraska. I spoke at Kevin, Patti, and Hanna Mathis' church on Sunday about childhood cancer and CureSearch. It really made me think about why I fell in love with Haley and Josh, their families, and what ultimately began my journey into advocating for childhood cancer. Wyatt has not been the only reason.
Sweet Josh reminds me so much of Carter. That quiet smile that melts your heart, and their love of animals. I truly believe that had the two of them spent time together they would be steadfast friends, just like their sisters.
Haley. Yes, Haley. Another quiet smile and quiet conversations that I will cherish. And her and her sister Hanna's love of softball that reminded me so much of myself. Two little Tomcats, who'd be happy anywhere as long as they were playing ball. Haley also loved little children.
And through their families and the Wilms Community that we became a part of we met Brooke Brion, Kyle Reed, and Brooke Clemons. 3 angels and 3 families and communities that mourned the loss of such special children. It has been hard to invest my heart in new Wilms families. To develop that relationship, to sign the guestbooks. Oh I still check their sites, follow how they are doing, but the last 2 years has been hard on our Wilms Community, and myself.
As much as it pains me to take Wyatt in for all his appointments, to deal with the challenges we face in his treatment and in the uncertainty of his health, I know that anyone of these families would be grateful to be in our shoes and have their child with them.
I hope ALL of our Wilms families, including those not specifically mentioned above know how much they mean to me.
Wyatt will have scans on the 14th of December at St. Paul Childrens. His last MRI showed that both of his kidneys are enlarged for his age and that the right is still experiencing growth from his last scans. It showed no renal masses, including nephrogenic rests, which is good and bad.
We know from when Wyatt had his partial nephrectomies in Feb. of 2004, that the surgeons noted the additional rests that were too numerous to be removed at that time on both kidneys. That they are not being picked up by the MRI could be interpreted two different ways. One that they are too small to be seen, and are not the reason for the unexpected kidney growth, VERY GOOD. Or two that like his CT scan from Feb. 2004 that the imaging studies are not picking them up. That CT only found one of the three areas that were removed during his partial nephrectomies. THE BAD.
The nephrologist has suggested doing a surgery to look at the kidneys more closely. We hate to put Wyatt through surgery and will be seeing another nephrologist for a second opinion and then will be going to St.Louis to see both Dr. DeBaun and Dr. Marsh.
We will continue to monitor him more frequently until we find the reason for the increased growth.
He has started going to preschool. Today is his second day. So far he is excited to go and liking it.
Basketball has started. Justin, Bryce, Ali, and Carter are all playing. Justin and Bryce both won their games on Tuesday. Ali’s team lost.
Justin got recognized for football by receiving Honorable Mention for the Minnesota River Conference and he was voted Most Improved Player by his teammates. Hard to believe that we won’t be going to any more football games and he will be graduating this spring.
Now that I put you to sleep, let me wish each and everyone of you a JOYOUS HOLIDAY SEASON filled with love, peace and good health!
Kris
Monday, November 27, 2006 6:22 PM CST
Hello everyone. I am sorry that I have not posted in so long. Time just seems to be flying, and I have wanted to get on here and give a full update and not just bits and pieces of what has been happening around here.
Wyatt celebrated his 5th birthday on November 14th. It does not seem real, it seems like it was not long ago that we were in the NICU at Childrens in St. Paul, hoping like mad to bring our beautiful boy home, and making sure that his siblings were getting as many visits and as much cuddle time with their brother as they could get. We never imagined the road and the journey that Wyatt would take our family on.
We have been busy here. Wyatt celebrated his 5th birthday with just our family on the 14th with a Cars ice cream cake, and many phone calls from lots of his friends. We had several times that night when both the home phone and the cell phone were ringing at the same time with someone calling to wish him a happy birthday.
Tuesday, November 14, 2006 2:03 PM CST
Today is Wild Wyatt's 5th Birthday. Can you believe it? It is very hard to believe that he is that old already.
We have been very busy here, and I promise that I will give you a full update soon, but I wanted to make sure and let you know that Wyatt is celebrating a very big day.
Please send him lots of love and birthday wishes.
Kris
Monday, October 23, 2006 2:07 PM CDT
Just wanted to let everyone know that we are awaiting word from Dr. DeBaun about what direction we are headed in. His kidney has experienced more growth, but is stable.
My computer is at the Dr. so I apologize for not updating this sooner.
Thanks for all the calls, feel free to keep calling.
Love,
Kris
Friday, October 13, 2006 9:12 AM CDT
Yesterday did not go as planned. Upon arriving at Childrens we learned that at 8:30 they were already behind, and that there was going to be a delay. When I asked how long our wait was going to be we were told that they were unsure. After pressing for a more definite answer we were told that the wait would be about 20 minutes.
I asked if we could have our chest xray done while we were waiting only to be told that they did not have the order, but when the receptionist called upstairs to tell them that we were going to be delayed in radiology the Hem/Onc clinic suddenly remembered that he needed the chest xray done.
It was after 9:30 before we were taken back for the MRI. We did try to do the MRI without sedation. Wyatt was scared and uncomfortable with the device that was strapped on his chest. We were then told that the MRI would have to be rescheduled with sedation.
After making a trip to the Hem/Onc department, countless phone calls, and conversations with Dr. Messinger we were told that we would be unable to have the MRI done yesterday and would have to wait until the 27th. Dr. Messinger was able to move it to the 18th.
Our nurse, Tom told me this morning that his chest xray was fine and from what was seen on the scan yesterday that everything was clear. They did not see the secondary spleen, and they were unable to measure his kidneys due to the fuzziness of the MRI.
The "finding" of the secondary spleen on the last ultrasound has been in the back of my mind. I do not understand how it could have been unfound up until this point. It has never been seen on any of his other imaging studies including the CT that was recently done.
Emotionally this is exhausting. I have been on the phone this morning with the radiology dept, I have left a message for our genetist, and I have talked with medical records and radiology to have all of Wyatt's records copied. I have called St. Louis Childrens and maybe its devine intervention, Dr. DeBaun is out of town and will not be seeing patients until Wed. of next week.
Dr. DeBaun focuses on pediatric oncology and hematology, with special interest in sickle cell disease, Beckwith-Wiedemann syndrome, Simpson Golabi Behmel syndrome, epidemiology and public health. He is the primary researcher for the Beckwith-Wiedemann Registry.
In 2005, Dr. DeBaun was recognized in "Best Doctors in America" and "America's Top Doctors." He was also on St. Louis Magazine's "2005 Best Doctors" list.
I am leaning heavily to making the trip to St. Louis to have Dr. DeBaun evaluate Wyatt. We did see Dr. DeBaun in July of 2004 during the Beckwith-Wiedemann conference in St. Louis. We have said all along that St. Paul has focused on the Wilms part of Wyatt's case, but having Beckwith-Wiedemann is what brought us to the Wilms road in our journey and that is what is complicating our journey right now. It needs to be addressed and I can't keep playing a guessing game.
Jimmie and Bryce are on their way to North Dakota hunting with Jimmie's Dad and his Uncle. Josie also went on her first trip as well.
It is windy and cold, cold here. I hope someone is bringing the heater for tonights game. UUUUGGGHHHH, we are all going to be POPSICKLES!
Thanks for checking in on us, for those of you who have called and for those of you who have been enlisted to keep me busy:) We love you all and are very, VERY THANKFUL you are sharing this journey with us.
Kris
Wednesday, October 11, 2006 10:35 AM CDT
MRI in the morning.
And with those words, could someone please remove the huge knot from my stomach, and allow me to get a goods nights rest?
Please pray that all goes well, that the clinic has their "stuff" together so our appointments go without incident and that accessing Wyatt does not turn into a traumatic event for him.
Thanks for thinking of Wyatt!
Kris
Monday, September 18, 2006 6:53 PM CDT
The last two weeks have indeed been frustrating. Waiting to hear from Drs. and dealing with the disorganization of the Hem/Onc clinic has made things a wee bit stressful.
Wyatt will have an MRI on October 12th. We are hoping that the MRI will be able to tell us the diference between Tumor or nephregenic rest tissue. Scan results on September 1st showed Wyatt's right kidney had grown slightly from his CT scan a month earlier.
Much of the confusion from this last scan has been because we saw a different Dr. and had a different radiologist. We are hoping that by waiting until the 12th when Dr. Messenger will be back, and able to see Wyatt, that we will be avoiding the confusion.
Dr. Messenger feels that Wyatt probaly has nephregenic rests on both kidneys and not just the right as we were told earlier. He also said that perhaps we were not as aggressive in his treatment as was needed when he was originally diagnosed. His position is to watch the kidneys to see if growth is shown, and then do treatment. The MRI is much more sensitive, and could perhaps show us why the kidney has grown.
Dr. Beckwith however has suggested in the past that the rests could be treated as Stage 1 favorable histology. Whether or not they would respond is another question. Wyatt has already undergone treatment once, which should of
taken care of the cells that the rests are composed of.
If anyone has any information about nephregenic rests specifically associated with patients already treated for Wilms Tumor please forward it to me. Once again we are in unchartered waters and are seeking outside resources. It may be necessary to look at other facilities as well.
Thanks to all of you who have called and emailed. I would like to think that I am keeping it together, but the fear of the unknown has me concerned. At times I feel like we are waiting for a ticking time bomb to go off.
Kris
Wednesday, September 6, 2006 7:56 AM CDT
All is quiet in the house at this moment.
Justin, Bryce, and Ali left for classes in the high school. Because they attend a smaller school 7-12 grades are together. Justin is a senior this year. He is playing football, and taking all excelerated classes.
Bryce is in 9th grade. He chose not to play football this year because of the low number of 9th graders who go out for football. They would not of had enough for a 9th grade team.
We attended Ali's first volleyball match last night. They won. She is in 8th grade.
Carter now rides the bus to the elementary and then back home. He was excited to go to school yesterday, and seemed to have a good day. He is in 3rd grade this year.
Wyatt was excited yesterday afternoon to hear that Carter would be home soon. Hmmmmm? Must of been because he had no one to fight with all day yesterday except Dad. LOL
I am waiting to hear from Dr. Messenger this morning. The results of Wyatt's AFP tumor marker test were unchanged from a month ago. We also are going to be waiting to hear from Dr. Micheal DeBaun, a pediatric oncologist from St. Louis, who also is the primary researcher for Beckwith-Wiedemann. I am also going to talk with Dr. Messenger about looking at having his information sent out to Bethesda, and MD Anderson.
Wyatt's medical case is unique because of the Beckwith-Wiedemann and Wilms Tumor.
Anything that increases your risk of getting a disease is called a risk factor. Wyatt's Wilms Tumor was a result of a genetic syndrome, Beckwith-Wiedemann, that affects growth or development. A genetic syndrome is a set of symptoms or conditions that occur together and is usually caused by abnormal genes. Because of Wyatt's risk factors he was beening screened every 3 months by ultrasound, and every 6 weeks by AFP tumor marker blood testing from the time he was 3 months old. This is how his Wilms Tumor was originally diagnosed.
His last scans on Friday, Sept 1st again showed growth to the right kidney. Although appearance wise they reported no changes. That is wonderful, but we need to follow Wyatt closely to find the reason or source for the sudden growth of the right kidney.
Nephregenic rests are a concern because 2 of the tumors removed in his partial nephrectomies of his kidneys when he was first diagnosed in Feb. 04 were found within a nephregenic rest. Nephregenic rests are known as a precurser to Wilms Tumor, and which Wyatt has a positive history of.
Have I confused you yet? The bottom line is that we are being diligent in his screening so that if we do find that he has relapsed we can catch it early, giving Wyatt the best chance of beating this horrible disease. Wilms Tumor is known as a fast growing cancer as well, and this is another reason why we have been screening him monthly, instead of every 3 months.
Here are the links to see the Beckwith-Wiedemann video clips from the DVD we were a part of.
http://www.beckwith-wiedemannsyndrome.org/tp42/page.asp?ID=48941
http://www.beckwith-wiedemannsyndrome.org/tp42/page.asp?ID=48781
On to better subjects. We recieved a call yesterday from Kelly Cotter, who will soon be leaving us at CureSearch, letting us know that the Senate Resolution introduced by Congressman Norm Coleman (R-MN) on Wednesday, June 15, 2005 during the fifth annual CureSearch Gold Ribbon Days is likely to be passed in the Senate this week. Children and families attending Gold Ribbon Days in 2005 and this past year for Gold Ribbon Days 2006 from June 19-21, circulated the Resolution and requested support from their members of Congress.
Below you will see the language from the resolution.
RESOLUTION
Supporting efforts to increase childhood cancer awareness, treatment, and research.
Whereas an estimated 12,400 children will be diagnosed with cancer in the year 2005;
Whereas cancer is the leading cause of death by disease in children under age 15;
Whereas an estimated 2,300 children will die from cancer in the year 2005;
Whereas the incidence of cancer among children in the United States is rising by about one percent each year;
Whereas 1 in every 330 Americans develops cancer before age 20;
Whereas approximately 8 percent of deaths of those between 1 and 19 years old are caused by cancer;
Whereas while some progress has been made, a number of opportunities for childhood cancer research still remain unfunded or underfunded;
Whereas limited resources for childhood cancer research can hinder the recruitment of investigators and physicians to pediatric oncology;
Whereas peer-reviewed clinical trials are the standard of care for pediatrics and have improved cancer survival rates among children;
Whereas the number of survivors of childhood cancers continues to grow, with about 1 in 640 adults between ages 20 to 39 who have a history of cancer;
Whereas up to two-thirds of childhood cancer survivors are likely to experience at least one late effect from treatment, many of which may be life-threatening;
Whereas some late effects of cancer treatment are identified early in follow-up and are easily resolved, while others may become chronic problems in adulthood and may have serious consequences; and
Whereas 89 percent of children with cancer experience substantial suffering in the last month of life: Now, therefore, be it
Resolved, That it is the sense of the House of Representatives that the Congress should support--
(1) public and private sector efforts to promote awareness about the incidence of cancer among children, the signs and symptoms of cancer in children, treatment options, and long-term follow-up;
(2)increased public and private investment in childhood cancer research to improve prevention, diagnosis,treatment, rehabilitation, post-treatment monitoring, and long-term survival;
(3)policies that provide incentives to encourage medical trainees and investigators to enter the field of pediatric oncology;
(4)policies that provide incentives to encourage the development of drugs and biologics designed to treat pediatric cancers;
(5) policies that encourage participation in clinical trials;
(6) medical education curricula designed to improve pain management for cancer patients; and
(7) policies that enhance education, services, and other resources related to late effects from treatment.
We also heard from Rachel, from Senator Colemans office asking for permission to use Wyatt in the press releases that will be sent out with the passing of the resolution. We also will be calling Liz to schedule our fishing trip that Wyatt and Senator Coleman talked about at Gold Ribbon Days in June.
September is Childhood Cancer Awareness Month. Few people realize that cancer is the leading cause of death by disease in children. Thousands of children will be diagnosed with cancer this year. The incidence of cancer in children is alarming and deserves heightened attention from Congress.
The House of Representatives has included $3 million in the Defense appropriations bill specifically to support childhood cancer research. The Senate Defense appropriations bill does not have any money designated for childhood cancer research in it. In the next few weeks members of the House and the Senate will meet in conference to come to agreement on this important legislation. Please let your members of Congress know that money for childhood cancer research is a critical, urgent need. You each can do this by typing in your zip code in the take action box above this journal entry and help us in the fight to get more money fro childhood cancer research.
Hope I haven't bored you to tears!
Kris
Monday, September 4, 2006 9:47 PM CDT
Hi everyone. We now have the computer at the new house and Justin set it up for me.
Wyatt had scans on Friday. No significant changes were found except that his right kidney has again increased in size. We are going to be sending out his medical information and hearing what several others Drs. have to say.
Thanks for checking in on us, I hope to have more info tomorrow and I will update tomorrow night.
Kris
Saturday, August 19, 2006 8:21 PM CDT
Tonight journaling is my break from the moving crunch. I know that if this was before Wyatt was diagnosed from cancer, I would truly be driving myself and everyone around me into the looney bin. You see our goal was to be fully in the new house by the 15th. Well that is one goal we did not meet. I am not going to go insane about the fact that it may be another week before we are.
Wyatt is outside playing in the culdesac with all the neighbor kids (probaly 15 of them) and excited that Dave, our neighbor, is going to be having a fire later that all the families from the culdesac can enjoy.
The neighbors and all the kids that we have here are truly what we will miss the most. I do not think we could ever have a neighborhood like we have had here.
Wyatt has been feeling pretty good the last 4 days. He will have scans on the 1st. Seems like we finally except the last bit of news and get everyone in agreement of what our next steps are and we are off to scans again. Quite frankly it is depressing. But on the other hand we could be beginning treatment and so I am thankful that we are not on that road yet.
Justin needed to get his haircut last weekend. We were in the truck going from Montgomery back to New Prague and they were talking about one of Bryce's friends who got his hair cut very short when Justin said out of the blue that if Wyatt does have to have treatment again that him and Bryce, and Dad were going to shave their heads for Wyatt. I was speechless. It was obvious that it was a topic that they had discussed. I was proud of them, but sad that it was something that they needed to talk with one another about.
I can't wait for football and volleyball to begin. Although school is another story. LOL You'd think I was the one having to hit the books.
Thanks for checking in on us.
Kris
Tuesday, August 15, 2006 8:48 AM CDT
Hi everyone.
I am sorry that you are not seeing a full, long update. I had a good portion of it typed and in the process of adding the links to the Beckwith-Wiedemann video that Wyatt, Jim and I were in lost it all....uuuggghhhhh.
Wyatt is having good days and bad. Some days he is full of energy and running around here 90 miles an hour. On several occasions he has woke up telling us his stomach hurts, I need medicine. What do you do? It is hard to know if this is everyday 4 year old stuff, or a sign that something is not right. The frequency of the complaints has made us nervous and we are waiting to hear what the Drs. think about the situation.
We are in the home stretch of the move to the new house. It has been very busy here. School sports also began this week.
Thanks for checking in on us, for calling, and for thinking of Wyatt!
Kris
Thursday, August 3, 2006 10:08 PM CDT
Still waiting on some more test results. I can tell you that everyone is in agreement that we will be watching and waiting to see how the next set of scans are in 4 weeks at this point, as long as the remaining test results are normal.
It could be much worse. I am clinging to that right now, and keeping busy.
After I have all the results I will update and explain the reasoning in the approach we are taking.
Kris
Wednesday, August 2, 2006 10:32 PM CDT
Just wanted to let everyone know that we spoke to the Dr. Messenger late this afternoon. Wyatt's right kidney is measuring .3 tenths smaller. Good news. The bad news is that we are dealing with nephrogenic rests.
Nephrogenic rests are abnormally persistent clusters of embryonal cells, representing microscopic malformations (dysplasias) of the developing kidney. Nephrogenic rests are best known as precursors of Wilms tumor.
We are still gathering facts and will be scheduling tests and speaking with the clinic in the morning. We also have blood work pending that was sent out to Mayo in Rochester. It maybe Friday morning before those results are back.
I will update more tomorrow, and will go into further detail then.
Kris
Wednesday, August 2, 2006 2:54 PM CDT
Hi. We are at home, and we are waiting. Unlike our previous scans we are waiting on results. Dr. Messenger told us he would call us when he had the results and a game plan.
Thanks for all of the phone calls, emails and messages. They mean the world to us, and we want all of you to know how blessed we are to have you all in our corner pulling for Wyatt.
Love,
Kris
Tuesday, July 25, 2006 8:30 AM CDT
Good Morning!
Wyatt's scans have been set for Aug 2 at 9:30 am at Childrens in St. Paul. We will also then see Dr. Messenger in clinic to discuss the results of the scans before he is gone for vacation the following week.
It is hard not to watch him looking for any signs that we are headed back into the craziness of treatment. Although he has needed naps on occasion, and a bit of crabiness, or should I say stubbornness, he appears fine. He has not complained about his tummy bothering him in over a week.
It has been very busy in the Rech household. It has truly helped to not dwell on the upcoming scans.
We are in the process of moving into our new home back in Montgomery. Ironically the home we purchased is a home we bid on before we moved to our current house in New Prague. The house was in foreclosure and closing on it turned into a nightmare. We are happy to have that behind us and are working on getting the house painted and the basement finished.
Yesterday Wyatt got his bike with training wheels out and began cruising around in that. It also went with us when we went to work at the new house. The problem is that we are moving from a culdesac that is safe for the kids to play in the road, to a house on a normal street. He had a hard time understanding why Mom would not let him ride in the road.
On our way home last night we got a phone call from Justin asking if we were still at the new house. After I told him we were on our way back to New Prague he calmly stated, " I need to go to the hospital for some stitches when you get home." Uuuuhhhh okay, now what? He cut his heel, quite nicely, and plenty deep, and needed 6 stitches. Football camp began yesterday, so today he will be an observer.
I think I would be lost if life was not busy.
Off to paint, try to stay cool, and have a great week!
Love,
Kris
Monday, July 17, 2006 9:07 AM CDT
Hello everyone.
I just wanted to post a quick update to let everyone know what direction we are heading with Wyatt. Please know that we have been extremely busy here and if I have not answered an email, please accept my apologies. The best way to get a hold of me these days is my cell phone, and I welcome a brief break from all the madness around here, so feel free to call.
After much discussion we have chosen to wait 4 weeks and rescan Wyatt, rather than jump into an exploratory surgery right now. Wilms Tumor is fast growing. If there is indeed new tumor growth, by waiting 4 weeks we would hope that it would be picked up by the next set of scans.
Of course you have to also look at the fact that the two smaller areas were not detected by the CT when Wyatt was originally diagnosed. We are aware of this, and it is a concern, but we just hate to put Wyatt through a surgery that may not be necessary.
Wyatt has become more and more aware of what happens at his appointments. He was very worried about his last history and physical appointment with Dr. Judy, our family Dr., and was scared about having a blood draw, even though we had said nothing about it to him.
We try to minimize what we can, and let Wyatt have as much control over the situation as possible.
Thanks for checking in on us. As soon as they finish scheduling the scans and appointments for Wyatt I will post them.
Kris
Friday, June 30, 2006 1:42 PM CDT
Wyatt had his scans on Thursday morning. We arrived at Childrens Radiology only to be told that Wyatt was not on the schedule. A phone call to Hem/Onc and we were told that we were having the CT done at St. Paul Radiology which does see children, but focuses more on adults.
We walked over there and upon checking in and answering a few questions I knew that we were in for an ordeal if we stayed there for the test. They have you drink contrast that you must wait an hour before scans can be done, Wyatt suddenly did not need to be sedated as we were previously told, so that history and physical we did the day before, not needed, and yes, they stick about 30 people a day, so the fact that Wyatt is a very dificult stick and blood draw should be no problem........Uuuummmmmm can I use your phone?
Happily we were told that they could squeeze us in at Childrens right away, but would have to wait until 1:00 pm if we would need to sedate him.
Our nurse, Jane, was wonderful, she let Wyatt do as much as he could on his own. His temp, push buttons to take his blood pressure, put on his own ET light to check his oxygen saturation, etc. It took longer if she would have just done it herself, so we were very thankful for having her.
After getting a look at his veins they suggested that we try the nitrous oxide gas for sedation for his IV placement. After learning about Wyatt's bad experience with the mask when he was put to sleep for his port removal she suggested that we use a "pig nose" like we use at the dentist. She explained everything to him and showed him the "spaghetti tubes" that she hooked up to the "magic gas."
He did very well at first, but then fought it when they began the IV placement. We will have to see how much he remembers next time.
He did GREAT through the CT, they let me stay in with him and I talked to him through the entire procedure.
At 12:45 we went in to meet with Dr. Yoav Messinger. He is one of Wyatt's favorite Drs. and loves Wyatt to pieces. He always tells Jim and I that he will take Wyatt home with him. Dr. Slomiany also spent time with us as well.
The area on his left kidney that they were concerned with is clear. Hurray!
The right kidney however has experienced growth in the last three months. It is now larger than left, even though the lower pole of the right kidney was removed during his partial nephectomies in Feb. of 2004.
Another reason this is of concern is that if you remember Wyatt has a congetial growth disorder, Beckwith-Wiedemann.
Patients with beckwith-Wiedemann syndrome have an increased risk of embryonal malignancies such as Wilms tumor, hepatoblastoma, neuroblastoma, adrenocortical cancer, and rhabdomyosarcoma. This is why Wyatt was being screened, and how his Wilms Tumor was found early.
One characteristic of Beckwith-Wiedemann is hemihypertrophy. Hemihypertrophy is overgrowth of one side of the body. In Wyatt's case his left side is larger than his right. This also has been true of his kidneys until his recent scans. The asymmetry has changed to right larger than left.
This change is causing concern. Although no renal masses were seen on his CT, the growth is of concern. The nephrologist suggested that we could do exploratory surgery to look more closely at the kidney. The fact that 2 of the 3 masses removed when Wyatt was first diagnosed in Feb 04 were not found on CT supports this option.
Jim and I, along with Dr. Messinger are more inclined to wait 6-8 weeks and then rescan, than put Wyatt through surgery.
The deciding factor is going to be second opinions, most notably from Dr. Beckwith himself. Wyatt is a unique case, and the Beckwith-Wiedemann along with his history of Wilms Tumor puts us in unchartered waters as far as our HEM/ONC Drs. are concerned. We are thankful that Dr. Messinger is happy to seek outside opinions about Wyatt's care.
Wilms is fast growing, so that is in the back of our minds as well. We hope that we are making the right choice in Wyatt's case and are anxious to hear what the other Drs. have to say.
I know that I have not updated about our trip. I promise that I will.
Thank you to everyone for their phone calls and emails. We are so lucky to have such great friends. I can tell you that Wyatt is his usual self today. Full of mischief and smiles:)
Love,
Kris
Wednesday, June 28, 2006 11:32 PM CDT
Scans in the morning. We have to be at St. Paul Childrens at 8:15 am for the CT. We will then go to clinic to discuss the results.
Please send Wyatt your positive thoughts:)
Kris
Thursday, June 15, 2006 8:47 AM CDT
I am excited to be leaving for Washington DC. Wyatt, Carter, Ali, her friend Katie Miller, Grandma Rech, and myself will be attending Gold Ribbon Days in Washington DC June 19-21.
We will also be joined by other families that we know while there, and are very excited to be seeing them again. The kids are excited to be going back to the same hotel that has a pool on the top floor with a spectacular view of the Capital and Monuments at night. Rest your ears Jess, Wyatt can't wait to see you!
Tuesday morning I was asked to introduce Senator Norm Coleman. I am still working on my speech. Where is Mrs. Curtis, my high school speech instructor, when I need her? LOL Wyatt will also be presenting a picture and thank you to Senator Coleman before he speaks as well.
Wyatt's clinic appointment went well. We do however need to go back after our trip to DC to have a CT scan done. We were told our Dr. was not to worried about it. Hmmmmm, if he isn't worried about it, we wouldn't be having a scan done. I am trying my best to put it to the back of my mind and focus on having a good, fun, trip. I think with some phone calls today I could convince them to get the CT done on an emergency basis, but then I would have to live with the results while we are gone.
We knew that there was an area of concern on his lower left kidney. We were waiting in the radiology lobby for his chest xrays when the radiologist told the ultrasound tech he wanted another look. We had a different tech and radiologist yesterday. The radiologist did a second look and told us that things looked good, and off to the clinic we went. 5 minutes from home we got the call from Tom, our primary nurse that our Dr. would like a CT done.
They just called about getting it scheduled. Tom is checking to see what we have a baseline scan of. My brain is not functioning very well this morning, and I could not remember if we did a baseline MRI or CT. If it is a CT he will need to be sedated. Sedation means a history and physical within 7 days. UUUUGGGGHHHHH.
One day at a time.
Kris
Tuesday, June 13, 2006 9:50 PM CDT
Heaven welcomed another of our brave cancer warriors. Jacob Duckworth, known to many of us as Amazing Jacob, earned his wings Sunday night. This family, like us, also learned their son had cancer in February of 2004, Jacob was diagnosed at the age of 3 with adrenocortical carcinoma, a rare cancer of the adrenal gland affecting only 15-20 children in the US a year. Jacob has an older brother, Kyle, who is 8 and triplet brothers Brandon & Devin who are 5.
Their story was significant to us because adrenal carcinoma is one of the cancers that Beckwith-Wiedemann children are at risk for. While at the Beckwith-Wiedemann conference in St. Louis we met another family who was also diagnosed with this form of cancer. That child is in remission.
We have followed this family and have celebrated Jacobs victories against the odds. My heart is heavy at his passing. Please keep them in your thoughts and prayers.
Wyatt has appointments tomorrow. Scans, bloodwork and an exam. I thought as time went on that the arrival of these appointments would become easier. I was wrong, and I really should have asked for them to be switched from right before we leave for Washington DC. My stomach is already in knots.
Looking at the good side we will be seeing one of our favorite Drs. in clinic. We will be sharing the Beckwith-Wiedemann DVD that Wyatt , Jim and I were filmed for. This will be our 2nd trip back in St. Paul’s Hem/Onc clinic with Tom as Wyatt’s primary nurse. The 1st trip went very well so we are expecting this clinic visit to be a breeze.
We also know that the radiology department in St. Paul will have familiar faces, and that we will get results right away from radiologists who are happy to answer questions for us. I wish that every family with a child with cancer had this luxury.
I am worried about his blood draws. We know he is not an easy stick, and I am not sure if he will remember the last appointment and the draw. It is so hard to see him go through that knowing that we have years of these appointments. I do not want them to become a traumatic event.
We are hoping for GREAT NEWS!
For the last couple of months I have not been able to shake the feeling that Wyatt, like so many of these children who we have lost, has that something special that draws people to him. I am not even sure of how to explain it to all of you. But when you look at Jacob, Josh, Haley, Kyle, Brooke B, Brooke C, Mason and others there was something about them that captured your heart. They draw people to them like magnets, and then are not easily forgotten. At times it is erie .
We have been to several gatherings for family and friends with graduations and a 60th birthday party recently. It has been the same at all of them. People come up to me and tell me what a delight Wyatt is, how cute he is, and talk to me about him. Many of these people have no idea Wyatt is in remission from cancer, or that he has health issues. Of course I am biased. He has always been a child with personality, even as a baby. I just pray that he continues to touch peoples hearts while being here on earth.
Our household has been very busy, and I am sorry that my updating has been horrible as of late. In that last month I have had a few people who I had no idea were checking in on us ask how we have been. Some of you have called worried. It is nice to know that family and friends are thinking of us.
Kris
Wednesday, June 7, 2006 11:06 PM CDT
WYATT IS WELL! HE IS A HAPPY, TAN LITTLE MAN WHO IS LOVING THE WARM WEATHER AND ANY FORM OF PLAYING IN THE WATER.
My apologies for not updating, I knew tonight after getting a phone call from a worried friend that I needed to let everyone know that he is fine. We have scans and appointments coming up on the 14th, the day before we leave for Washington DC.
Life has been super busy, and I will update before leaving for up north this weekend. Hopefully I will be able to share some pictures with you as well.
Love and offers of apologies:)
Kris
____________________________________________________________
Directly above this journal entry you will find the press release issued from Senator Colemans office about the introduction of the Conquer Childhood Cancer Act of 2006. I have also included details of what the Childhood Cancer Act of 2006 is.
Now that the Senate and House Members have joined with CureSearch to introduce the Conquer Childhood Cancer Act of 2006 in landmark legislation that would provide $100 million to expand research programs aimed at curing and preventing pediatric cancer I have had a lot of people ask how they can help.
By entering in your zip code in the alert box above this journal entry you will be taken to CureSearch’s website and will see the information of who to contact for your area. You will be able to compose an email from CureSearch’s website. The site is very user friendly and gives you key talking points that you can add to your email with a click of your mouse.
The site will also show you if your represenative has already become a co sponsor and allows you to thank them for their support.
If they have not become a cosponsor SHARE YOUR STORY! Tell your representatives how your life has been impacted by childhood cancer and ask them to become an original cosponsor of the Conquer Childhood Cancer Act of 2006.
I know that before meeting with Senator Coleman I would never have believed that one person could truly make a difference. Wyatt changed that for me. YOU ALSO CAN HELP MAKE A DIFFERENCE!
Saturday, April 22, 2006 11:17 PM CDT
Directly above this journal entry you will find the press release issued from Senator Colemans office about the introduction of the Conquer Childhood Cancer Act of 2006. I have also included details of what the Childhood Cancer Act of 2006 is.
Now that the Senate and House Members have joined with CureSearch to introduce the Conquer Childhood Cancer Act of 2006 in landmark legislation that would provide $100 million to expand research programs aimed at curing and preventing pediatric cancer I have had a lot of people ask how they can help.
By entering in your zip code in the alert box above this journal entry you will be taken to CureSearch’s website and will see the information of who to contact for your area. You will be able to compose an email from CureSearch’s website. The site is very user friendly and gives you key talking points that you can add to your email with a click of your mouse.
The site will also show you if your represenative has already become a co sponsor and allows you to thank them for their support.
If they have not become a cosponsor SHARE YOUR STORY! Tell your representatives how your life has been impacted by childhood cancer and ask them to become an original cosponsor of the Conquer Childhood Cancer Act of 2006.
I know that before meeting with Senator Coleman I would never have believed that one person could truly make a difference. Wyatt changed that for me. YOU ALSO CAN HELP MAKE A DIFFERENCE!
________________________________________________________
I apologize for not updating sooner, and for not signing in on all of our precious friends caringbridge sites. Please know that I am there reading updates. Unfortunately I have been in a funk. A I HATE CANCER FUNK!
With Kyle's death, and then Brookes unexpected passing I have been at a loss for words. Haley's Birthday and Harlei's unexpected news of possible tumor growth also has had me wondering why, why, why.
At times I think that throwing in the towel might be the answer. But then when you think of dear friends who no longer have their children to laugh with and hold I know that the fight has to continue.
So now onto Wyatt. He has not been himself. Fighting something viral, low grade temps, crabbiness, and periods of sleep. And at other moments he is just Wyatt.
He loves to talk on the phone.....Grandma Rech, Susan, Jenny, Angelique, Steve, Diane, Jess, Hanna, Kevin and Patti have all had earfuls! lol
He also has loved being outside. He has a whole basket of golf balls, and has been playing golf, golf. Josie was his ball return this afternoon. Quite entertaining.
We have had many baseball and softball games. Bryce was convinced to play ball by his classmates and coach, so we know have all 3 playing. The bad side is that they have pretty much all played at the same time which means we are missing games.
Justin played on Thursday, winning 24-0. It was fun to see them have a great time out there as well. Justin had 2 big hits, scoring several of those 24 runs and he was hit by a pitch.
Bryce's team is struggling with small numbers, and not alot of kids who have alot of experience. He is frustrated, and you can tell his heart is just not in it.
Ali's team on the other hand is doing very well. She plays 7th grade and usually also plays the 8th grade game too. Those girls are having fun even when Mom is cringing because the fundamentals at times are secondary. LOL
Carter could live outside. It might be interesting to know how many miles that child is putting on that bike of his. He is ready for school to be done with, and wants to get out fishing.
Next week is prom, and Jimmie and Grandpa Rech will be turning another year older on the 27th. Jimmie will be 40!
Have a wonderful week!
Kris
Friday, April 7, 2006 7:59 AM CDT
Directly above this journal entry you will find the press release issued from Senator Colemans office about the introduction of the Conquer Childhood Cancer Act of 2006. I have also included details of what the Childhood Cancer Act of 2006 is.
Now that the Senate and House Members have joined with CureSearch to introduce the Conquer Childhood Cancer Act of 2006 in landmark legislation that would provide $100 million to expand research programs aimed at curing and preventing pediatric cancer I have had a lot of people ask how they can help.
By entering in your zip code in the alert box above this journal entry you will be taken to CureSearch’s website and will see the information of who to contact for your area. You will be able to compose an email from CureSearch’s website. The site is very user friendly and gives you key talking points that you can add to your email with a click of your mouse.
The site will also show you if your represenative has already become a co sponsor and allows you to thank them for their support.
If they have not become a cosponsor SHARE YOUR STORY! Tell your representatives how your life has been impacted by childhood cancer and ask them to become an original cosponsor of the Conquer Childhood Cancer Act of 2006.
I know that before meeting with Senator Coleman I would never have believed that one person could truly make a difference. Wyatt changed that for me. YOU ALSO CAN HELP MAKE A DIFFERENCE!
______________________________________________________
URGENT PRAYERS ARE NEEDED FOR BROOKE! She is experiencing complications from her surgery to remove a nodule from her lung that the surgeon believes was Wilms Tumor. PLEASE SEND THEM YOUR POSITIVE THOUGHTS AND KEEP HER FAMILY IN YOUR PRAYERS!
Wyatt has been quite the celebrity the past week. Articles about our trip to Washington DC have been in The Faribault Daily News, Owatonna Peoples Press, Montgomery Messenger and The New Prague Times.
Varsity baseball was to begin on Monday. Because of the wet conditions the game was rescheduled for today. Yesterdays game will also be recheduled. Justin has been having fun at practice and they should have a pretty good team this year.
Ali will have her first softball games next week. They have a small number of girls and will get lots of playing time. A great opportunity for her and her teammates. I believe that you learn better when you can experience the situations during the game.
Gold Ribbon Days 2006 are quickly approaching. There is lots of excitement in the air about this years event. Last year our Wilms Tumor Family had 2 families in attendance, our family and The Brestels from NE. This year I believe that we have 7 families registered right now.
It will be wonderful to see some of these families again and to meet some for the first time. During this journey these families have become important to us. They know exactly what we go thru day in and day out. They are a source of strength for me.
I have said before that we did not have a choice when our children are diagnosed. What we do with the hand we are dealt is within our control. I will never celebrate Wyatt being diagnosed with cancer, but I can tell you that I am extremely grateful for the wonderful family I have become a part of during the past two years. I am also so proud of what we are going to accomplish as a group. There is no better way to honor each and every one of our brave and courageous children.
We hope you will join us if you can! I will leave you with this picture of Wyatt having a bit of fun in the Senate Media Gallery. He is proudly wearing his Brooke Brion, Josh Brestel and Haley Mathis shirt.
Love,
Kris
Monday, March 27, 2006 4:53 PM CST
Directly above this journal entry you will find the press release issued from Senator Colemans office about the introduction of the Conquer Childhood Cancer Act of 2006. I have also included details of what the Childhood Cancer Act of 2006 is.
Now that the Senate and House Members have joined with CureSearch to introduce the Conquer Childhood Cancer Act of 2006 in landmark legislation that would provide $100 million to expand research programs aimed at curing and preventing pediatric cancer I have had a lot of people ask how they can help.
By entering in your zip code in the alert box above this journal entry you will be taken to CureSearch’s website and will see the information of who to contact for your area. This will also show you if your represenative has already become a co sponsor and allows you to thank them for their support..
If they have not become a cosponsor SHARE YOUR STORY! Tell your representatives how your life has been impacted by childhood cancer and ask them to become an original cosponsor of the Conquer Childhood Cancer Act of 2006. You will be able to compose an email from CureSearch’s website. The site is very user friendly and gives you key talking points that you can add to your email with a click of your mouse.
SHARE YOUR STORY! I know that before meeting with Senator Coleman I would never have believed that one person could truly make a difference. Wyatt changed that for me. YOU ALSO CAN HELP MAKE A DIFFERENCE!
I am happy to say that Senator Mark Dayton from MN has also become a co sponsor as of March 14th, 2006. As of today we do not have any members of the House for the State of Minnesota.
For other caringbridge families, I hope that you too will put the alert stickers on your website. They can be found at http://www.capwiz.com/curesearch/home/
at the bottom of the page under web stickers.
Yesterday we celebrated Justin's 17th Birthday with family. Pretty hard to believe that he is that old.
Today I spent the morning and some of the afternoon dealing with medical bills and insurance issues. The results of which were not pretty. It seems that all of Wyatt's HEM/ONC appointments and scans will not be covered at 100 percent but at 80/20 due to changes in the policy and because Wyatt is seen as an outpatient. Of course this could be worse, but it was unexpected and really has thrown me for a loop. Needless to say we will be reaching that out of pocket max yearly from here on out.
Part of my day was spent taking care of basement issues as well, it is still a disaster zone....lol. Dry, but a big mess. No time like the present to get it sorted out.
A couple of stories are in the works for the local papers, I will share them with you when they are available.
Love,
Kris
Monday, March 20, 2006 7:49 AM CST
Directly above this journal entry you will find the press release issued from Senator Colemans office about the introduction of the Conquer Childhood Cancer Act of 2006. I have also included details of what the Childhood Cancer Act of 2006 is.
It is hard to believe that it is March 20th. This month has flown by, and in 4 days Justin will be 17 years old. I am feeling old.
It has been very busy here. Jimmie replaced the sump pump on Friday before he went back to work for the weekend, and me and the kids have been working on getting everything dried out downstairs. The washing machine has been getting a work out, with our laundry from Florida, and wet rugs, etc from the basement.
Our trip was nice. We had great weather, it did not rain once while we were in Florida.
Wyatt had so much fun at Give Kids the World. He enjoyed playing golf, golf as he calls it at the minature golf area. He loved being able to go get ice cream at the Ice Cream Parlor that was open for breakfast till bedtime. By the end of our week there he was eating a bowl of sliced banana's with whipped cream on top and a cherry several times a day, and he loved being able to go swimming. Our last morning there he even went for a horseback ride, on the big horse, not the pony, which surprised both Jimmie and I.
We did 3 days of Walt Disney, including MGM, Epcot, The Magic Kingdom, and The Animal Kingdom. A day at Universal and Islands of Adventure, a day at Sea World, a day at Wet and Wild, and a day at Busch Gardens in Tampa. Jimmie and the 4 older kids went to Gatorland, and a go kart track the day Wyatt and I were in Washington DC.
We sure got a work out, and I wish we could of made it to the beaches at Daytona or Clearwater, but we just did not have time.
Wyatt and Carter had a great time meeting all the characters. We have 100's of photos. There were times when older brother Justin was "required" to take Wyatt to meet them, but he even enjoyed it.
Our trip to Washington DC on the 8th for the introduction of the Conquer Childhood Cancer Act of 2006 was awe inspiring, and sad at the same time.
Wyatt and I left Florida at 7 am that morning, and he was happy to be flying in a "planer" again. Everyone was waiting for us to arrive at the Hart Senate building when we got there, and we quickly went to Senator Coleman's office. From his office we were escorted to the Senate Building via a train and into the Senate Gallery. As we got off the elevator, Wyatt asked if we were going to church. LOL The decor in the building has many paintings, some of which are being restored, and are very beautiful.
Once in the Senate Gallery we were told that anyone without press credentials was going to have to leave the gallery and would not be able to be present for the introduction of the bill. Senator Colemans staff quickly got to work on the issue and shortly after that he arrived and told me that we would begin in a couple of minutes. He asked Wyatt if he remembered him, and Wyatt told him that he played with the truck that he gave him in his room.(Senator Coleman's office)
We were allowed to be in the Senate Gallery for the introduction of the bill. A first time an exception has been made, and I can tell you a very big deal. Wyatt was busy taking pictures of everyone, each time a new speaker began he got the camera out and took a picture. Senator Coleman was laughing and smiling at him throughout the morning.
After we were done and the pictures were taken, Senator Colemans staff took us back to his office, and made us feel at home, got me on the internet to see the press releases, and had a good time entertaining Wyatt. We also spent some more time with Senator Coleman in his office, and were able to thank him for sponsoring the bill, and Wyatt was still busy taking pictures, which had both of us laughing.
We went out to eat with the 2 other families who were in attendance, along with Kelly and Kate from CureSearch, and then we did a bit of sight seeing.
I had planned on taking Wyatt to one of the malls and putting him in a stroller because I knew all the walking was making him tired, and after getting on the Metro headed in that direction, he soon fell asleep, so I went straight to the airport where he slept for over 3 hours. He woke up 45 minutes before we were scheduled to depart, and the flight crew, who feel in love with him because he was so cute sleeping in the chair at the gate, took him in the plane and he was able to sit in the pilots seat in the cockpit of the plane we flew back to Florida on. He was so happy!
The irony to all of this was that my favorite little card shark, Kyle Reed from Iowa, who bravely fought Wilms Tumor, died on the day the bill was introduced. His smile touches my heart, and in alot of ways I think he reminds me of another Sweet Angel, Josh Brestel. This is one reason why we must find a cure, why we need your help now to get this bill passed, and why we need to bring awareness to childhood cancer.
I will be adding links and the information of how you can each help in the next day or two.
Our flight was delayed coming home from Florida, we left about 2 hours late. We came home to snow, snow, and more snow. But Wyatt, Carter, and Ali have been enjoying the huge, HUGE, pile in the culdesac at the bottom of our driveway.
Kris
Friday, March 17, 2006 1:03 AM CST
Thank you to everyone for your emails and calls.
We are home! The bad news is that the sump pump was not working while we were gone, and we have quite a bit of water in the basement.
I will update when I can.
Love,
Kris
Tuesday, March 7, 2006 6:09 PM CST
Hi everyone. I wanted to let you know what is happening, or as much as I know. Remember we are dealing with Washington DC....
Wyatt and I should arrive in Washington DC shortly after 9 am EST. From Reagan National we will be riding the metro to Capital Hill. We are meeting in the Hart Senate building at 10:00 am EST and will be going to Senator Colemans office around 10:30 am EST. They will help us get through security and into the Senate Gallery where the bill will be presented hopefully between 11:15-11:45 am EST. They have been working to get a live feed for the introduction with CSPAN. So if you have CSPAN it may be broadcasted live. There is a press conference to follow with the NHL as well.
www.curesearch.org should be a good source for information as well as Senator Colemans website, which you can find by searching his name as well.
Wyatt is already asleep here at Give Kids the World, and he was up late last night, so it will be a busy couple of days for him. Hopefully he will catch up on some of his sleep on the plane rides to and from DC.
Love,
Kris
Friday, March 3, 2006 9:29 AM CST
Hello everyone. Here is the update some of you have been waiting for. ( Hey Jenny........one of those people is you! LOL)
Clear scans!!
It was a long week with sick children. Wyatt had seemed to be doing better, although he was coughing more, and I was afraid that when he had his chest x-ray done yesterday that we would find it had moved to his lungs. That was not the case. However he was up most of the night vomiting over and over. Poor Jimmie came home from work two hours early to try and get some sleep before we had to leave for scans and appointments at Childrens in St. Paul, and not more than 20 minutes later we were up with Wyatt, changing sheets and clothes. I felt so bad for both of them.
We did give Wyatt half of a ODT Zofran (oral dissolving tablet) before we left for St. Paul. Wyatt calls it “cotton candy” because he thinks that is what it tastes like. It did the trick and he was not sick as we continued to give him it during the day. He was running high temps again, and slept for the majority of the day.
Wyatt did great at his scans, and we were happy to have Donna doing our scans again. No surprises, and no problems. Sarah, from child life came and talked to Wyatt about having his blood drawn from his arm. He knows her well from the time she has spent with Carter, Ali, and Bryce. He wasn’t in the mood for chatter, but did want white milk, which Sarah eventually had sent to us in the tube system. Wyatt thought that was cool.
His blood draw was fair. Of course the arm with the emla on it (emla is used to numb the area so you do not feel the needle poke) did not have a vein that the lab tech wanted to attempt, so we ended up using his other arm and after pulling the needle back out and moving it around a bit she was able to draw his labs. Wyatt, as you can imagine was not too happy, and his little arm is very sore.
Our clinic appointment went well. Oh my, did I just say that? Yep, it was long, but it went well. And I hope that you can feel the relief pouring from me when I say that. His appointments have been a HUGE source of frustration for so long, that I was in awe of how well things went yesterday.
When we decided to switch back to St. Paul we requested to have Tom, a nurse who took care of Wyatt on the HEM/ONC floor several times and who attended Camp Connect with the 3 older kids after the twins died, be our primary nurse. Tom, who Wyatt remembers as “the sticker guy” did a great job of going over Wyatts test schedule, and making sure our concerns were shared with Dr. Messinger. Before we got home Tom had already called with Wyatt’s test results. We didn’t have a nurse running around like a chicken with their head cut off, everything was ordered correctly and the results were given in a timely manner.
Dr. Messinger, who adores Wyatt, was so happy to see him, but was disappointed Wyatt was not his usual happy self. He thinks Wyatt is doing great, but was concerned about him being sick as long as he has and wants us to have Wyatt in to see Dr. Judy this morning if he is still sick for some fluids. Dr. Messinger also feels that doing the chest x-rays every three months is a good idea. Many Wilms kids relapse to the lungs, and he said that the amount of radiation that Wyatt would be exposed to is minimal. In his words, once every 3 months is less than living in California on a daily basis.
I am glad we switched back, I would rather have Doctors we like and deal with clinic issues than having a Doctor that will not work with you and a better clinic. Live and learn. I am sending Tom a card expressing my gratitude:)
So now I need to catch everyone up. Of course we have been busy. Justin will play in the first round of sections for basketball tomorrow night. Bryce and Ali are now done with basketball, so the evenings have been quite a bit quieter here, although everyone has been too sick to enjoy it yet.
Wyatt went to Grandma and Grandpa Rech’s last Friday night because we had basketball games in Wells. Wells is around an hour away, and not far from the Iowa border. Bryce was moved up to the 9th grade team for the remainder of the season and played at 4:30, and Justin played varsity at 7:30. Carter has enjoyed being the “water boy” for the 9th grade team so he wanted to go to the games. About half way through Justin’s varsity game Carter came and sat with us and told us that his back hurt, and he felt warm as well. We had to stop on the way home twice because he was sick.
Then last Saturday Ali had a tournament, and Bryce was also sick. Ali did not feel well Sunday, but was not vomiting. Ali and Jimmie remain the only two who have not gotten the bug everyone else has had.
We had a nice weekend with the Brestels, Angel Josh's family, while they were here from Lincoln, NE. They made it here in time to watch Ali play basketball in Le Center that Friday afternoon. Ali and Jess of course need a year to be together, but they had a great time. I am sure they enjoyed the quiet after being in our busy household. Wyatt was ready to go to Chipolte, and then home with them. He sure loves his Jess, and Steve and Diane. It was cold the weekend they were here. We went to the Mall of America that Saturday afternoon, and I could not believe the number of people there. More than I have seen in the years since it has been open, including at Christmas. Jimmie worked the weekend they were here, so we will have to get together with them again. It is too bad that we will not be able to take Steve and Jimmie anywhere together for fear that they would royally embarass all of us. Jimmie was sharing some of his technique with Steve, much to my, Jess and Ali's horror. LOL. We wish we were closer, but will be seeing them again soon at Gold Ribbon Days in June if not sooner.
Our Make-a-Wish trip to Florida is coming up. Wyatt is getting excited. We will be staying at Give Kids The World, and going to see "Willy" at Sea World. And I think the rest of the kids are getting excited as well. We are being picked up by limo at 5:15 in the morning. And are still hoping Northwest does not strike, causing our trip to be rearranged. It really has been frustrating, waiting for them to resolve the issues with the pilots, having the deadlines extended over and over. We just have to have faith that everything will work out ok.
Wyatt and I will be flying from Florida to Washington DC for the introduction of the Conquer Childhood Cancer Act of 2006. I know that there will be media coverage, and as soon as I have information I will try and get it on here for everyone. The arrangements are still very fluid right now.
CureSearch will also share information on their site as well.
Senator Coleman is the sponsor of the Conquer Childhood Cancer Act of 2006 and will be holding a press conference along with Sen. Reed and some representative of the NHL to introduce the bill on March 8th. Senators Reed (D-RI, Lieberman (D-CT), Isakson (R-GA), Carper (D-DE), Landrieu (D-LA), Bunning (R-KY), Murkowski (R-AK), Cochran (R-MS)and Talent (R-MO) are original co sponsors. The introduction of this bill is a milestone for childhood cancer as this is the first ever authorization to provide funds specifically for childhood cancer research.
The introduction of the bill brings awareness to the issue of childhood cancer and is a drop in a bucket compared to what other forms of cancer get yearly for research from the federal government.
I have had so many emotions running through my head when I think about this bill. I am honored and humbled to know that Wyatt has played such a huge role in this fight. I hope that when he looks back on all of this he will be proud of all we have accomplished. Wyatt knows and loves other children who have cancer, or whose families have been affected by cancer. As he gets older he will know that what we are doing in Washington DC is an honor for those children and their families as well. Wyatt is their voice right now.
But at the same time I am saddened by the fight that these children have endured, and know that for some families it is too little, too late. And the kids, these brave kids, is what this battle is all about. We need to find a cure.
As we take some very special children in our hearts, we hope you’ll be walking with us.
Love,
Kris
Wednesday, March 1, 2006 11:12 PM CST
Sorry for not updating sooner. The kids were very generous and have shared their illnesses with dear old Mom.
We have scans, blood work, and Drs. appointments in the morning. PLEASE keep Wyatt in your thoughts. I so want this appointment to go well, and pray that our first blood draws without his port go without any problems.
He was to the dentist yesterday and that appointment did not go well, even though we had Molly, our favorite, working with Wyatt. He has never been like that before, so I am concerned about the blood draws tomorrow. Daddy will be going with, so I hope that he will be the good luck charm we need.
Keep praying for Kyle, and for his family. I sure hope their Mexico trip is going well and they are making some precious memories.
Kris
Friday, February 24, 2006 7:52 AM CST
Good Morning.
A quick update. Wyatt has an ear infection, not really a surprise to either Jimmie or I as he was cranky over the weekend while the Brestels were here visiting. Added to that is something viral that is affecting his airway making his breathing "wheezy" and his voice almost whisper like.
For those vincristine parents that had their childs voice affected you will know exactly how he sounds.
The fever at least can be helped with tylenol and advil at this point. He is on Cefzil, Prednisolone, a steroid to help open his airway, and also ear drops for his ears. We have also been giving him some Zofran to help with the nausea and so that he will eat or drink something.
There is usually not to much that puts Wyatt out of commission, but it is obvious by just looking at him that he is sick, and he knows that if he takes medicine he will feel alittle better, so he has been telling me he needs more medicine. Poor guy. And with that quiet little voice it makes you just want to pick him up and squeeze him.
We have all of our arrangements for our trip. Yay! The catch is we are on NORTHWEST.........but have been assured that if they do strike they will get us on other carriers. It could just take us longer to get there as we might have to go through Houston, etc.
Also we have been asked to attend the Introduction of the Conquer Childhood Cancer Act of 2006 by Senator Coleman in Washington DC, and to be at the press conference. A very significant milestone for CureSearch, for families affected by childhood cancer, and a huge honor for us and especially Wyatt, to know that he has played such a vital role in the authorization. Wyatt and I would have to fly from Florida to Washington DC, and then back.
I will update more later. Hopefully when Wyatt wakes up he will be feeling much better this morning:)
Kris
Wednesday, February 22, 2006 11:22 AM CST
Hi.
Just a quick update.
Master Wyatt is sick. High temps that tylenol and the "berry blue" advil are not affecting. He was up last night during the night and threw up.
This morning his temp is still up and he has thrown up again, but he sounds wheezy, not quite the barky seal type cough of croup. Not what any of the other members of the house have had either.
After getting by the front desk dragons at the clinic we will be seeing Dr. Judy early in the afternoon.
Send him your positive wishes:) Make A Wish is suppose to be coming tonight to finalize our trip arrangements, we may have to reschedule.
I will try to get the info that some have been asking for about the bill and CureSearch on here as soon as I can.
Kris
Friday, February 3, 2006 1:28 PM CST
Well we can try this again...lol.
Technical difficulties abound here and I am searching for a brick to throw at my computer. I apologize for not updating sooner.
Today marks the 2 year anniversary of Wyatt being diagnosed with Wilms Tumor. I must say that we have experienced so many different emotions since this journey began.
At times I used to mark time as before Emilie and Randi and after their deaths. Now we have another significant milestone to add to the mix.
I clearly recall that day. I remember having conversations leading up to that day about all the appointments we were putting Wyatt through and that I felt like we were screening him too much. I knew I was going to the ultrasound alone with Wyatt that day because Jimmie had to work that night and he needed to sleep that morning. I was hoping to be in and out of our genetic appointment quickly, and we were, and down to the radiology department and home before noon.
Shortly after the ultrasound began, I knew there was a problem. Having the radiologist come in to take a second look confirmed my suspicions. He told me they had found a spot on his right kidney and would need to do further testing. Wyatt and I were to return to the Genetics office to see Dr. Mendelsohn.
It still hadn’t sunk in, I didn’t understand why the nurse was surprised that Jimmie was not coming up for the CT scan that they were ordering, and I had to admit I was surprised that they felt it had to be done immediately.
The CT scan was a nightmare from start to finish. They couldn't get a line started for the contrast, poke after poke and person after person and no luck. They told me that the didn't allow parents in the room for the CT scan, and asked me to leave. I know I was laughing at them hysterically, saying I had been in the room with him when he was a couple of days old in the NICU when he had his first one done, and that I WAS NOT LEAVING. Not another word was said about it.
He was given medication rectally to sedate him so they could try to get a line started. I was holding him and watching him as his head and body began to go limp, and as his eyes got glassy. And I will never forget him reaching up to wipe the tears that ran down my face as I talked to him and held him.
That medication was already wearing off when an NICU nurse that I requested to be called finally got a line started in his foot. Blood tests that needed to be done, were not completed because they blew the line and I refused to let them try again. Dr. Mendelsohn's nurse confirmed what I finally acknowledged, and I think I already knew, they thought it was Wilms Tumor.
By this time it was after 6 pm. The oncologist wanted us to return in the morning. And I wanted answers. I think our genetics nurse felt sorry for me when she told me that they thought it was Wilms Tumor. We needed to wait for Wyatt to wake up before they would let me leave with him. After several hours I was finally on our way home only to get home and have to turn around and take him into the ER here in New Prague because Childrens had called and said he had a critical blood sugar level. Well they did not take into account that he had not had anything to eat or drink all day.
And so our journey began. In the next two weeks Wyatt underwent surgery and they found two additional tumors. He had surgery again to place his port a cath, and he began chemotherapy.
We have learned so much along the way. We have met some incredible, and supportive friends. And we are working hard to try and help others who are also on their own life changing journey.
My trip to Washington DC for CureSearch Team Leader Advocacy training went well. This was the third and largest Team Leader meeting. There were 33 Team Leaders representing children with cancer and their families in 29 states. Team Leader training is the cornerstone of a year long effort to raise awareness and increase federal funding for childhood cancer research.
I flew out on Monday and my flight was uneventful. I got to my hotel using the metro with no problems.
Tuesday evening CureSearch sponsored a Congressional Reception. I had the honor of introducing Jayne Jones from Senator Colemans office. I met Jayne and Senator Coleman in June while in Washington DC for Gold Ribbon Days.
Here is a portion of Jayne’s speech from that evening.
“I remember very clearly one of our past meetings with team leaders like yourselves. Let me tell you a story. A Grandmother, a Mother, and a young boy walked into Senator Colemans office. After a quick hello the nerves began to settle in. The Grandmothers voice began to quiver after Senator Coleman asked her a question. He asked her how can I help? Within a second the tears began to fall and with great pride the Grandmother showed my boss a picture of her grandson who was battling cancer. She asked Senator Coleman to do whatever you can.
Next a young mother who had an adorable young son with her talked about the experience with a tumor. The son began to get squirmish and decided that Senator Colemans office was the next best Nascar race track with the toy truck my boss gave him the moment they walked in.
After hearing about 10 minutes of their cancer struggles my boss walked up to the little boy and asked if he could pick him up, he agreed, and they instantly became buddies. And I mean that. Then I got that magic look. Senator Coleman handed me a copy of CureSearch literature from a team leader and told me, Jayne, we do whatever we can. I want a call scheduled with a member of congress. That call happened within 24 hours. I do lots of meetings everyday, and we hear many wish lists. Tomorrow you will be those Team Leaders.....”
I wanted to share this with you because I know that when I went to Washington DC in June I could never have imagined that Wyatt could of had such an impact. As a direct result of our meeting, Senator Coleman and Jack Reed (D-RI) have a draft bill ready for introduction and are looking for additional cosponsors. They are circulating a letter asking Senators to add their names as original cosponsors of what will be known as the Conquering Childhood Cancer Act of 2006. They are currently joined by Senator Joe Lieberman (D-CT) and Senator Johnny Isakson (R-GA) who agreed earlier to support the bill.
I encourage anyone who has had their lives impacted by cancer to join us in June for Gold Ribbon Days.
Wednesday morning our day began at 7 am for training and then I began my 9 congressional visits at 10:30 am. I met with the offices of Congressman Jim Oberstar(D-8th), Congressman Collin Peterson(D-7th), Congressman Martin Sabo(D-5th), Congressman Mark Kennedy(R-6th), Congresswoman Betty McCollum(D-4th), Senator Mark Dayton(D), Senator Norm Coleman(R),Congressman John Kline(R-2nd and our District), and Congressman Jim Ramstad(R-3rd). My last meeting was at 4:45 pm and I was exhausted, but felt good about most of my meetings.
I did see Senator Coleman and Congresswoman Betty McCollum personally.
In one day Team Leaders and CureSearch staff made over 175 visits to Congressional offices. Since my meetings Senator Dayton and Congressman Kline have signed on as cosponsors of House Resolution 323 / Senate Resolution 182 to raise awareness in Congress and around the country that childhood cancer is the leading cause of death by disease in children in the United States. My goal is to have them all become cosponsors of this Resolution that Senator Coleman was the one of the original sponsors of.
Wednesday night I went for a Taxi ride, always risky in DC, (LOL) and out for dinner with Steve Brestel, Angel Josh’s Dad from NE, Amy Dilbeck from CA, a survivor of Osteosarcoma, Robyn Raphael frrom CA, who’s son Keaton died from Neuroblastoma, and Betsy Mowell, our CureSearch Representative, and childhood cancer survivor. It was a fun and enjoyable evening to get out with all of them. I look forward to seeing all of them in June.
My flight left early on Thursday. Boarding was interesting, and many did not make the flight due to issues with passing through security when a machine broke down, so the flight was not full.
Wyatt and Jimmie picked me up at the airport. Wyatt was all smiles:)
We are busy around here with basketball, and will be going on Wyatt’s Make A Wish trip that has been approved.
Please keep KYLE in your prayers. He is a Wilms Tumor Fighter from Iowa. His family has chose to not continue chemotherapy and spend as much quality time with Kyle as they can. Please show them your support and wish them wonderful days filled with happiness.
I hope you are still awake........
Kris
Thursday, January 12, 2006 12:30 AM CST
HAPPY BIRTHDAY CARTER! Today is Carter's 8th Birthday. Wow! It is hard to believe that our little duck hunter and fisherman is that old. He has been out growing things, so I should not be so surprised.
Carter in his new coat, hat, and mittens Christmas morning.
The kids choose a restraunt to go to for their birthday that we eat at as a family. In the past Carter usually picks The Rain Forest Cafe at the Mall of America, but this year he has been talking about going to Joe's Crab Shack.
We will be having his Birthday Party on Sunday with family. He will get to chose the menu, and the cake.
Last night we got the Beckwith-Wiedemann DVD in the mail. We were filmed for it last May, but because of a series of glitches it was just recently completed. It is going to be a powerful tool for families that need help getting the screenings completed, and also lets parents know they are not alone.
Newly diagnosed parents will find answers to questions they have, and parents will be able to present the DVD to medical professionals to share current screening protocols and learn from the Beckwith experts.
There are several "Wyatt Moments" in the DVD. One of him cracking a baseball that Jimmie is pitching to him with a bat that is especially "Wyatt." Then there is a section that is entitled "Kris Rech's story." There are pictures of Wyatt and our family in this section as well as me telling Wyatt's story. I am so pleased with the completion, and honored that we were chosen.
Saturday both Ali and Bryce were in tournaments. Ali played in Medford. Their 7th grade team placed 2nd in a 8th grade tournament.
Ali's 7th grade tourney team in Medford
Bryce played here in New Prague, and they got 3rd place, and played very well.
Bryce's 8th grade team. Bryce is in the middle, with the cheezy smile.
Last Sunday I atttended the ceremony for The MN Tree of Hope in St. Cloud. One of the reasons that I attended was to get information about CureSearch out to other families who have faced or are facing cancer.
While there I learned about another family who lost their son to Wilms Tumor, and who are having a benefit in February. We have already put the word out to our network of friends and are hoping to be able to offer them some assistance with their benefit. I will share more with you soon.
Monday I will be flying out to go to Team Leader Training in Washington DC and also for congressional meetings on Capital Hill to advocate for funding for CureSearch.
I was asked to introduce Jayne Jones, Senator Norm Coleman's Senior Legislative Assistant, at the Congressional Reception on Tuesday evening. I was happy to say yes. I have now been asked to share Wyatt's story, and our families as well as talk about the relationship we have with Senator Coleman's office. Been a while since I have been in speech class.....I am a bit nervous, but also am trying to find the words that will truly tell why I have found that I need to move forward and advocate for funding for childhood cancer, most importantly, Wilms Tumor.
I remember when I began visiting the sites of my first 8 Wilms Tumor kids. Nikki, Autumn, Josh, Katey, Haley, Andrew, Emily, and Ellie Anna. And then the 8 grew and included other children, some fighting other forms of cancer, some with other disabilities.
Many of these families have become cherished friends. Too many of them now have angels. In alittle over a year I have attended the funerals of three of these special angels, Josh, Haley, and Brooke. 3 Wilms Tumor fighters, 3 deaths too many.
While Wyatt is in remission, which I am so very thankful for, I know that life can change in the blink of an eye. We need research, and funding for the research to find the cure for all children.
I will try to update before I leave.
Kris
Thursday, January 12, 2006 12:30 AM CST
HAPPY BIRTHDAY CARTER! Today is Carter's 8th Birthday. Wow! It is hard to believe that our little duck hunter and fisherman is that old. He has been out growing things, so I should not be so surprised.
Carter in his new coat, hat, and mittens Christmas morning.
The kids choose a restraunt to go to for their birthday that we eat at as a family. In the past Carter usually picks The Rain Forest Cafe at the Mall of America, but this year he has been talking about going to Joe's Crab Shack.
We will be having his Birthday Party on Sunday with family. He will get to chose the menu, and the cake.
Last night we got the Beckwith-Wiedemann DVD in the mail. We were filmed for it last May, but because of a series of glitches it was just recently completed. It is going to be a powerful tool for families that need help getting the screenings completed, and also lets parents know they are not alone.
Newly diagnosed parents will find answers to questions they have, and parents will be able to present the DVD to medical professionals to share current screening protocols and learn from the Beckwith experts.
There are several "Wyatt Moments" in the DVD. One of him cracking a baseball that Jimmie is pitching to him with a bat that is especially "Wyatt." Then there is a section that is entitled "Kris Rech's story." There are pictures of Wyatt and our family in this section as well as me telling Wyatt's story. I am so pleased with the completion, and honored that we were chosen.
Saturday both Ali and Bryce were in tournaments. Ali played in Medford. Their 7th grade team placed 2nd in a 8th grade tournament.
Ali's 7th grade tourney team in Medford
Bryce played here in New Prague, and they got 3rd place, and played very well.
Bryce's 8th grade team. Bryce is in the middle, with the cheezy smile.
Last Sunday I atttended the ceremony for The MN Tree of Hope in St. Cloud. One of the reasons that I attended was to get information about CureSearch out to other families who have faced or are facing cancer.
While there I learned about another family who lost their son to Wilms Tumor, and who are having a benefit in February. We have already put the word out to our network of friends and are hoping to be able to offer them some assistance with their benefit. I will share more with you soon.
Monday I will be flying out to go to Team Leader Training in Washington DC and also for congressional meetings on Capital Hill to advocate for funding for CureSearch.
I was asked to introduce Jayne Jones, Senator Norm Coleman's Senior Legislative Assistant, at the Congressional Reception on Tuesday evening. I was happy to say yes. I have now been asked to share Wyatt's story, and our families as well as talk about the relationship we have with Senator Coleman's office. Been a while since I have been in speech class.....I am a bit nervous, but also am trying to find the words that will truly tell why I have found that I need to move forward and advocate for funding for childhood cancer, most importantly, Wilms Tumor.
I remember when I began visiting the sites of my first 8 Wilms Tumor kids. Nikki, Autumn, Josh, Katey, Haley, Andrew, Emily, and Ellie Anna. And then the 8 grew and included other children, some fighting other forms of cancer, some with other disabilities.
Many of these families have become cherished friends. Too many of them now have angels. In alittle over a year I have attended the funerals of three of these special angels, Josh, Haley, and Brooke. 3 Wilms Tumor fighters, 3 deaths too many.
While Wyatt is in remission, which I am so very thankful for, I know that life can change in the blink of an eye. We need research, and funding for the research to find the cure for all children.
I will try to update before I leave.
Kris
Saturday, December 31, 2005 4:03 AM CST
5 years ago today a precious baby, Emilie Grace, was born into this world at 2:20 am. Her twin, Randyll Lorraine, having died in utero weeks before. Emilie was a beautiful, tiny little fighter.
She looked so much like her siblings, that cute little nose and even for as tiny as she was, she had those cheeks.
We had her with us for such a short time, her birth chaotic, and the NICU busy and overwhelming. I can still walk thru those days leading up to her birth. The frequent hospitalizations, the trip to North Memorial, the transfer to Abbott Northwestren. The whole ordeal leading to her birth.
I remember seeing her for the first time before she was wisked to the NICU at Childrens Minneapolis from Abbott thru the tunnel. And I can still here the words from the Drs. about her prognosis. The minutes or hour she may have.
She proved them wrong, and hung on. Mom and Dad held her, Grandma and Grandpa Rech came to see her and hold her. But as much as we wanted her here, we did not want her to suffer. No matter how many times I go over the choice we made to let her go, I know that it is human nature to wonder what might have been, to regret.
So today on their 5th birthday I hope that Emilie and Randi know how very much they are loved. And that they will always be a part of this family, never forgotten.
I truly believe that Emilie and Randi's precious gift to us is Wyatt. If they had lived, we would not have him. The shock of finding out I was pregnant with him was what I needed to help me get thru the anger and saddness of losing them, and focus on the future. Life has a way of going on around you even when you want it to stop.
Wyatt could never replace Emilie or Randi, nor do we expect him to. Please do not feel bad about talking about them, it hurts more when you don't.
There is still some anger, but with it is an overwhelming saddness now. So many things changed 5 years ago. Relationships with Jimmie, my family, with God.
Rocking chairs will always remind me of those moments spent with Emilie. The smell of the lotion. Tiny dainty fingers, with that one angled just so. Those chubby cheeks, so like her siblings. Her strength. Mom is very proud of you.
The one thing that has not changed is my love for Emilie and Randi. However short our time together was, my heart will always remember.
Today we will celebrate their 5th birthday's. We always have ice cream cake and go to the cemetary with balloons. Please send them your own Birthday Wishes in your own way.
Wyatt's port removal went okay. We were in and out of the clinic in Minneapolis by 9:15, and then had to kill time before checking in at St. Paul at 11:30. We did a little shopping and Wyatt spent some of his Christmas money on Toy Story 2 so he could watch that on his way home in the van. Finally we deceided to check in early in hopes that he could get into surgery earlier than 1:00 pm.
Wyatt before his port removal December 28th, 2005
He went in about 12:15, the anestisiologist wanted us to use the mask instead of putting him to sleep by accessing his port which had been suggested by Dr. Nelson from HEM/ONC and us. He fought that once in the OR. Once in recovery he was very upset, and by the time they came and got one of us he was so upset that he was thrashing and screaming and kicking when I went to pick him up. That crazed look as I struggled to pick him up broke my heart. It took me nearly 20 minutes to calm him down. 
Back in the short stay unit after surgery
He clearly remembers them using the mask. The nurse anestistit asked why we didn't just use his port? After I explained, she told me that next time we needed to be firm about using a line to put him to sleep. Of course I truly hope there is no next time, but I am thankful for her advice.
The IV that they did finally get in to him in the OR ended up in his foot, and he blew that line while he was upset. I chose not to have another one started. Of course this leaves me nervous for future blood draws, but I am praying that we have no problems.
He has been back to his old self today. Seems alittle tired, but goes 90 miles an hour till he completely crashes like always.
Christmas here was fun for Wyatt, and the rest of the family as well.
Christmas 2005 with Josie in front of the tree
He does not like Santa. Still insists that he was not here, even though Justin helped him write Santa a note, and leave cookies for Santa and Mrs. Claus, and an apple for the reindeer. He opened gifts from him, but he was not here.....
Wyatt and Bryce's cat Spooker
I was sick with a horrible sinus cold. I however had lots of help from my 3 elves, Justin, Bryce, and Ali. Ali had Wyatt asleep by 9:45. Yep, for those of you who know Wyatt, you read that correctly. Justin and Bryce organized all the HOHO gifts, and Justin did the some assembly required for Mom. They were wonderful, and I think they had a good time too.
Mom's Christmas Elves in action
Justin played in a tournament in Medford Tues, Wed, and Thurs, they got 3rd place.
We got snow yesterday, and Josie has been transformed into a sled dog. Wyatt and Carter get on the sled that is hooked up to her leash and away they go. Josie loves the snow.
We hope you have a wonderful, and safe New Year!
A wonderful friend shared this with us in her Christmas letter, I know she will be honored to see it here.
Sounds of the season, we send our love on high,
Carried on the wings of angels
Listen and watch our love fly!
We love you, miss you and wish you a wonderful birthday Sweet Angels Emilie and Randi!
Love,
Mom
Wednesday, December 28, 2005 6:37 AM CST
Good Morning everyone.
We hope that all of you have had a wonderful Holiday.
Wyatt will be having his port out today. He is scheduled to have his pre-op physical at 9 AM in Minneapolis at Childrens HEM/ONC and then surgery at 1:00 PM at St. Paul Childrens. Another milestone.
He has been very busy playing with all of his Christmas stuff, and enjoying spending time at Grandma and Grandpa Rechs' while Justin is playing in his holiday basketball tournament in Medford.
Kris
Monday, December 19, 2005 12:38 AM CST
Life has been busy, and it has kept me moving in the right direction.
Last Saturday morning Ali, Wyatt, Diane Smisek and one of Ali's friends, Kaitlyn Miller left for Lincoln, NE. The original purpose for the trip was to attend the Birthday Party in honor of Angel Josh Brestel, and to see his family and the Mathis family. But Brooke Brion earned her wings last week as well, so we extended our stay so that we could attend her services and honor her as well.
Saturday Jess Brestel, Angel Josh's sister, joined the kids at the hotel and went swimming, and after several hours of SPA RECH, getting hair and nails done we went out to eat with Steve and Diane Brestel. While we were there we learned that Kevin and Patti Mathis were also eating at the same restraunt while Hanna was attending a birthday party. We all went to surprise Hanna.
Jess came back to the hotel and spent the night after we hit the pool until 11:30 that night.
Sunday after some shopping we were off to Josh's party. It was AWESOME to see all the toys that were there when we got there and how many continued to be brought over the afternoon. What a wonderful tribute it was to Sweet Josh for his birthday. 20 something large garbage bags of toys, $600.00 plus dollars and three bikes.
Hanna stayed with us that night at the hotel after we went to Jess's basketball game.
Monday we attended Brooke's services and honored that beautiful little spitfire. We left for home after the reception, arriving home late.
I cannot tell you how much we will miss these three precious Wilms kids from Nebraska. Their lives were short but they will be remembered for how they lived them while here on this earth, for their sweet smiles, crazy faces, and love of life.
Wyatt of course was happy to see everyone. His Jess and Hanner-Nanner. I am sure that both girls are breathing a sigh of relief not to have to sleep with the little octupus another night. LOL.
There is something so special about those kids together when you see them. We are blessed to have them and their families as friends. Being together with all of them is like being in a familiar place. Like going to Grandma's house.
Wyatt's check up, scans and his bloodwork went ok. I am disappointed with hearing statistics recited to me while there. It probaly was the worst thing our Dr. could of said to me to begin his appointment. Wyatt is an individual with a unique set of circumstances, and his screenings and testing needs to fit that profile. I have asked for help from the Beckwith experts and we will move forward with his screenings based on those opionions, with or without the help of our Dr.
Most of us have heard that wonderful rendition of "if your child has cancer then Wilms is the type you want your child to have." There is no comfort in hearing that from a Dr. when your child is diagnosed, nor is there when you have seen countless families lose their beautiful children to Wilms.
We are still waiting for his tumor marker test. His scans were okay, and that was indeed an adventure. It was the first time he had an ultrasound in Minneapolis. New tech, new radiologist. They had no idea that he had partial nephrectomies of both kidneys done. They looked at several areas over and over, which of course as a parent has your skin crawling and your heart in your throat. But in the end they are saying no changes. HURRAY!!
We may have his port taken out, the Dr. wants it out. In fact she was adamant about it. We will make that decision when all the facts are in.
We had a nice weekend with The Rohloffs here. Wish it could of been longer. We will work to get up to the lake the last weekend of January hopefully.
I just got my camera back after having to send it in to have the lens replaced, so my Christmas cards and pictured may very well turn into Happy New Years Blessings.
Hugs,
Kris
Wednesday, December 7, 2005 7:40 AM CST
****THURSDAY EVENING, DECEMBER 8, 2005 BEAUTIFUL BROOKE EARNED HER WINGS THIS MORNING. PLEASE KEEP DARBY, NICK , GAVIN AND ANGEL BROOKE IN YOUR THOUGHTS AND PRAYERS.
BROOKE
Brrrrr....it is cold here! Hanging around the zero mark for another day. The kids and Josie enjoy playing outside, but with the cold the kids have not been out.
Josie playing in the snow
Wyatt's Tumor Marker test results came back higher than his previous blood work, but because it is not a significant jump, they are acceptable. We will have scans and chest x-rays on the 15th.
He is doing well otherwise. He has gotten in the habit of napping these days. Don't ask where that habit came from. And then of course he turns into the energizer bunny.
Yesterday we had our first basketball games. And we started the year off with all 3 of them, Justin, Bryce, and Ali having games. Wyatt, Carter and I left home at 3:45.
We went to Ali's game in Jordan. She played well. They won by 2. She is very agressive. Couldn't have anything to do with the fact that she has 4 brothers? It was fun to watch them.
Then we waited for Ali to change and headed to Bryce's game in Morristown. We were able to see the second half of his game. They did not play as well as I expected, and the officiating was horrible. They did lose their game. Bryce's team is not used to losing, so this will be a character building experience for them, and it will be interesting to see how they respond to the loss.
Bryce, Ali and I chatted about the game on the way to New Richland. Bryce is able to be critical about his own play and knows where the improvement needs to be made for himself and for the team. I knew he was working through that process as we were talking. I admire him for being able to do that in a mature and healthy way. He knew the officiating was lousy, but did not place the blame on them. And he wasn't critical of anyone on his team.
Justin started his first varsity basketball game in New Richland. A big game for him and the team. Lots of nervous energy. I am sure they are glad to have it behind them so that they can focus on the next game. They lost by 6.
Wyatt was so excited to go to the games. He changed shirts so he would be wearing a "basketball shirt." Jimmie had to go and get his Kevin Garnett Timberwolves shirt with "numbers" on it for him to wear. He was happy to see his siblings friends, and Abby at the varsity game.
We got home at 10 pm. No fighting to get kids to crawl in bed. We were all ready to hit the sack after an enjoyable, busy evening.
Thursday both Justin and Bryce will be playing. Bryce away in Jordan and then Justin at home against Jordan. Carter will be playing at halftime, and is REALLY excited about that.
This weekend Wyatt, Ali, Diane Smisek and myself will be in Nebraska for Angel Josh Brestel's birthday party, and to see the Brestel and Mathis families. Wyatt is looking forward to seeing everyone, most importantly his Jess and Hanner-Nanner.
Please remember all the children who have earned their angel wings this Sunday.
Stay warm, and think tropical weather.....lol
Kris
Wednesday, November 30, 2005 8:27 AM CST
Well the weather has been.....interesting to say the least. From thunderstorms to ice to snow. All in one day.
The kids have been sharing the newest bug to be making the rounds. Carter and Wyatt started with it, shared with Justin and now have blessed Bryce with it. Wyatt's has lingered alittle with low grade temps, and at times can make him crabby, but it is NOT slowing him down by any means.
Wyatt will have his tumor marker testing done tomorrow morning at Children's in Minneapolis. Depending on where the test is sent out to, it could be Monday before we have the results. Then he will have scans and see Dr. Perkins on the 15th.
Basketball games will begin next week. Wyatt can not wait! And I think that being busy and getting back to the routine is something that I need right now.
Yesterday afternoon I had a mini melt down and knew I just needed to step back and get out of the house for a while. I asked Jim to put his shoes on and we went to replace the mouse for my computer, whose cord got ate by the shredder. And yes, this did contribute to that melt down. LOL I can laugh about it now.
I have been putting off the dusting of my big curio cabinent that holds all of Emilie and Randi's keepsakes. We moved it several weeks ago, and with its new placement, the dust bunnies are visible. That is my goal for today. To get it dusted. It is a dificult thing for me, taking out each item. Emilies dress, and hat, her blankets, name bands from the hospital. Keepsakes given to us for the memorial service. But I need to just get it done.
This weekend we will be attending the Make A Wish party at the Mall of America for the stories of light at Camp Snoopy.
Sunday is the IRIS Holiday Service of Remembrance for the girls in Faribault. And I also wanted to share with you the information for Candlelighters Worldwide Candle Lighting on December 11, 2005. This is an opportunity for you to help remember all of those children who have earned their wings.
We hope you have a wonderful weekend!
Kris
Monday, November 28, 2005 8:17 AM CST
EEEKKK, this weather is crazy! We had snow, which is now gone, thanks to warmer temps and rain. Yes, rain..... complete with a few claps of thunder. Late this afternoon into evening it is suppose to change over to snow. Hmmmm...makes me think of one big ice skating rink. Being a parent of a 16 year old has been made more dificult by the weather.
Wyatt was like the energizer bunny last night, and his partner in crime and late night games, otherwise known as Daddy, was working. We watched an hour of Emeril and an hour of Walt Disney World Holiday before he was finally settled in and ready for sleep.
I was able to schedule his testing appointments. He will have his tumor marker testing done on Thursday, and after hearing that Wyatt has on occasion been complaining that his stomach hurts we have moved his scans up to the 15th. It is a challenge to get into see our Dr. She has been off for the holidays, and is not in the clinic rotation.
Hopefully his complaints are just nothing. But with him telling us out of the blue several different times, it is better to be safe than sorry in my book. And I would love to have peace of mind headed into the holidays.
Some of you know that the holidays for me are bittersweet, and that this is a time of the year that I do not enjoy. In ways I am thankful that basketball will be in full swing to keep me moving and my mind occupied.
Wyatt is ready for some basketball. I think in part because he has missed seeing all of his siblings friends at the games.
We put the tree up last night, which he thought was great. Maybe tonight we will get it decorated.
Hope you had a wonderful Thanksgiving.
Kris
Monday, November 21, 2005 10:59 AM CST
Wyatt's caringbridge page passed the 50,000 mark sometime this morning. We look forward to checking in the guestbook to see who has been checking in on us, and know that it is a great way for everyone to be able to see how he is and give updates. Thank you to everyone for their support!~
It is still quiet here. Wyatt is trying to catch up on some sleep after the excitement of his Birthday Party on Saturday, and playing with all his new toys yesterday. And of course with Dad being home this weekend, his late night partner in crime allowed him to stay up later than normal.
I am working on getting his appointments scheduled for his upcoming testing.
His ear infection and the rupture in his ear drum has finally cleared up. He has been sleeping more than normal lately, but maybe he is going through a growth spurt and trying to catch up.
Bryce is doing great as well. Back to school and all 4 of the older kids are playing basketball.
Not much else new here.
Hope everyone has a wonderful Turkey Day!
Kris
Monday, November 14, 2005 9:49 AM CST
WOW! WYATT IS 4!~
Where has the time gone? He is still sleeping, and except for the couple of questions last night, I do not think that he realizes what today is.
As for Mom, mixed emotions. It is hard to believe he is 4. But then you look back and think about all he has been through and it is so very sad. And then I think about dear friends who no longer have their child, and I am upset with myself for even thinking that way.
We have learned so very much in the last 4 years, met so many wonderful people, and made a whole new "family." There is so much more to be done, experienced, and conquered. But I am almost positive that Wyatt will be doing them with that same determination and with a smile complete with those dimples.
We know we are so very blessed to have him.
Wyatt saw Dr. Hamlar, the ENT, and he prescribed some drops for his ears because he still is having alot of drainage. We are hoping it clears up, and then we can see if we need to reinsert the tubes.
We will have blood work done in another week or so for the Tumor Markers.
Basketball officially begins today. Carter has basketball on Saturday's and Justin has been helping with the kids as well. Carter counts down to Saturday all week long, and is truly enjoying himself.
We are also in a winter weather advisory, which means we could be seeing some white stuff around here. Could be quite interesting to see what Josie thinks of it.
Bryce is doing much better, back to school, and glad to be playing hoops again. He was warned that if he got hit in the nose it could be a big bloody mess, so I am hoping that he heeds the warning. He did really well when they removed the shims from his nose. Dr. Hamlar told him that most adults faint. Bryce was as green as the shirt he was wearing, and felt sick to his stomach, but he made it through ok. As he was laying there with a wet towel on his face and a resident talking to him, he asked her if he could keep the shims to show everyone at school....lol...ONLY BRYCE!~
I am going to get some things done before The Birthday Boy gets up.
Kris
Monday, November 7, 2005 7:56 AM CST
Hello, not sure what I was thinking about when I was updating.....but I forgot to mention that there is a certain little boy named Wyatt, aka Buck, Bucket, that is going to be 4 on the 14th. Yes, 4. Where has the time gone?
Hi everyone.
Sorry for not updating sooner. Here are some Halloween pictures for you:)
Bryce is returning to school this morning. Black eye and all, I know he has said this past week that he needs to tape a sign to himself to explain what happened to him. It does however look much better than it did those first two days. Hopefully he will have no problems.
It has been hard for him to not do any basketball or rough housing for almost a week. He is looking forward to seeing Dr. Hamlar on Wednesday and having the shims removed from his nose. (And getting the all clear to play hoops!)
We are in between sports seasons and the gym has been open after school. All 4 of the older kids have been chomping at the bit to go and shoot hoops. Carter started basketball on Saturday. It is good for him to have his own time to participate and have some fun after all the games he attends for his older siblings.
Wyatt is doing pretty well. He will also be seeing Dr. Hamlar on Wednesday to have his ear looked at. It is continuing to drain, although not nearly as bad as the day of his surgery. But it is apparent that we need to find a solution for the problem. Another set of tubes may be needed, which is not a big deal.
WYATT SLEEPING AFTER SURGERY IN THE SHORT STAY UNIT
Hugs to everyone!~
Kris
Tuesday, November 1, 2005 3:31 PM CST
Hi everyone.
I am updating from The University of MN Childrens 5th floor. Bryce had his surgery this morning and things have got alittle off course.
They needed to do both sides of his sinuses due to abnormal tissue in the area, and they also had to remove a piece of bone from in his nose that was contributing to the problem.
He had alot of bleeding post op which also caused his eye to swell and the blood to pool in that area as well. His blood pressure was high and he had to be treated with medication to lower that as well.
He has had alot of discomfort, but I think we have finally gotten a handle on it and he is now sleeping.
He can barely open his right eye, and will have a very nice black and blue eye. His reply was cool.....LOL....only a 14 yr old.
I will update more later in the day, but know from the voice mails that a few of you were beginning to wonder why we were not home as of yet.
I also will post some pictures of Wyatt, The Ninja Turtle and Carter, aka Dale Earnhardt Jr as soon as I can. They were excited about Trick or Treating, and had a good time. Wyatt was outside today at Grandma Rech's wacking the ghosts hanging from the trees with his turtle numb chucks in full costume of course.
Kris
Thursday, October 27, 2005 5:17 PM CDT
Hi. We got home about 45 minutes ago. I just wanted to update everyone on Wyatt. He did pretty well, it was so much easier for Wyatt to be put to sleep because of his port rather than having him use the mask to breathe in the gas. I know that Jim was impressed, and he didn't struggle at all.
He got 3 crowns and 3 fillings done. It was deceided that because he had some cavities between several teeth that the crowns would be better for him in the long run. However they accidentally cut his gum, and it required a dissolvable suture to be used to control the bleeding and bring the edges together cleanly. He is already been trying to get it out of his mouth, so hopefully it heals quickly.
We also believe we found the source of Wyatt's temps. When he had his preop done Dr. Judy told us that he had wax in his right ear and she could not see into it, same as when we were in the ER. Well we noticed today that the wax was accessible so we removed it and his ear began draining. It was full of puss, blood and the tube was laying in the canal.
We called the Hem/Onc clinic in St. Paul, and even though I was rudely reminded that we had transfered care to Minneapolis, one of the nurse practioners came down to check it for us. His ear drum is ruptured, and she said that when you see this kind of infection, with the blood and puss and smell that there is usually more than one form of bacteria growing and may require several rounds of antibiotics.
They put him on Zithromax for 10 days and we are using a full dose for those 10 days instead of giving him a large first dose and then halving it.
Bryce is having his surgery on Tuesday with out Ear, Nose and Throat Dr. so we will talk with him then about Wyatt. He may need a new tube put in.
We are so glad that she came down to the short stay/same day surgery to check him out. It saved us having to run to Minneapolis or to our family clinic in Faribault.
Wyatt is sleeping, we had to arouse him enough to be discharged. And he has made a few comments about the stitch and his mouth, but for the most part he is doing GREAT!~
Thanks for your well wishes.
Wednesday, October 26, 2005 8:41 PM CDT
Well Wyatt is upstairs taking a "cuzzi bath" so he is squeaky clean for his surgery in the morning. We have to be in St. Paul at 6 AM, ya uuuggghhh, out the door by 5:15 AM.
We have hit some snags with getting things organized at the new clinic. I am hoping it is not a sign of things to come. Wyatt needed a pre op physical, which should have been done by Dr. Perkins our primary, but because of her not being available it was done by our family Dr. But the orders for medications and antibiotics had to still come from Perkins, so I spent a day and a half trying to get those orders to St. Paul. I am so glad we did not push for the port removal, things really would have been a mess.
But the positive...we hopefully will be home by noon with Wyatt. And all the phone calls made me aware that we had been moved on the schedule to the main OR at Childrens instead of the same day surgery center.
Bryce will be having his septum corrected and some sinus issues fixed on Tuesday, so he will be having surgery as well. He is having his surgery at the University of MN.
The boys lost there playoff game last night. It was sad because they were ahead through the 3rd quarter so fall sports are done, and Bryce will already begin basketball practice tomorrow. His team will be playing in some early tournaments. They really are a very good team, and will be a force to reckon with in the years to come.
Kris
MONDAY 10:55 PM
I have an urgent request. Brooke, a beautiful spitfire from Omaha, NE that went through treatment with both Josh and Haley will be going home tomorrow on hospice. Some of you who know us well have heard me talk about her. Not only is this so very hard for her family, but also for Josh's family and Haley's family as well. It is so very dificult for them to watch Brooke go through what their precious child has.
I think the bottom of my stomache fell out when Diane Brestel phoned tonight, and I know as the news spreads throughout our Wilms Tumor Family that the sorrow grows as well. And if I am honest, there is a great deal of anger. Anger that another family is losing the battle to this nasty disease. Anger that Childhood Cancer does not get the recognition that it needs to wipe it off the face of the earth. So please take a moment and think about these families, and all the other children fighting this disease, and the people affected by it.
Please stop by and let them know you are thinking of them and sending positive thoughts.
BROOKE
ANGEL JOSH'S FAMILY
ANGEL HALEY'S FAMILY
Wednesday, October 19, 2005 1:22 PM CDT
MONDAY 10:55 PM
I have an urgent request. Brooke, a beautiful spitfire from Omaha, NE that went through treatment with both Josh and Haley will be going home tomorrow on hospice. Some of you who know us well have heard me talk about her. Not only is this so very hard for her family, but also for Josh's family and Haley's family as well. It is so very dificult for them to watch Brooke go through what their precious child has.
I think the bottom of my stomache fell out when Diane Brestel phoned tonight, and I know as the news spreads throughout our Wilms Tumor Family that the sorrow grows as well. And if I am honest, there is a great deal of anger. Anger that another family is losing the battle to this nasty disease. Anger that Childhood Cancer does not get the recognition that it needs to wipe it off the face of the earth. So please take a moment and think about these families, and all the other children fighting this disease, and the people affected by it.
Please stop by and let them know you are thinking of them and sending positive thoughts.
BROOKE
ANGEL JOSH'S FAMILY
ANGEL HALEY'S FAMILY
Well I typed a whole new update yesterday, only to lose it. LOL. Must be my wonderful luck.....
We have been busy here, nothing new.
Wyatt saw Dr. Dahl last Wednesday at Gillette St. Paul. He is a leg lengthening specialist. He actually hid from him, which I am sure is a result of the fun he had in the ER. He thinks he is doing great, his leg length discrepancy continues to measure about the same, although he feels that this will change as he gets older. As long as it stays as it is now it still can be corrected by breaking the growth plate in the longer leg, which is the left one, when he is in his early teens.
WYATT WITH A PICTURE OF HIS "BONES"
We had a nice conversation with him about Beckwith-Wiedemann Syndrome(BWS), Wilms Tumor and the leg length discrepancy. It is truly amazing that an orthopedic specialist knows more about all these issues than most Drs. We all agreed that the statistics that are reported are not a true measure of the amount of children with BWS that become affected with Wilms and vice versa. Many children are not screened for the other when they are diagnosed with one or the other.
We saw Dr. Perkins at Minneapolis Childrens Hem/Onc Clinic on Thursday. It was like walking into a new world, not the same as the clinic in St. Paul. I personally felt like a new kid on the block, so it was a learning experience. Dr. Perkins helped write the screening protocol for children with BWS and Wilms Tumor with our genetist Dr. Nancy Mendelsohn, so she is current with the BWS/Wilms issues. (Could you hear that sigh of relief? Even just typing the words makes me less stressed.
DADDY AND WYATT BLOWING BUBBLES AT THE NEW CLINIC IN MINNEAPOLIS
The clinic itself was alittle crazy because we were just assigned a nurse and Dr. Perkins was trying to get all of our testing and scans set up. Wyatt also got a flu shot.
We have deceided that we will switch over to Minneapolis for Wyatt to recieve care.
Wyatt will have a CT scan tomorrow morning, and we will be trying to have a bunch of blood chemistries drawn from his arm in an attempt to see if he does well, and they can find a vein. He has always been a hard stick in the past, but if it goes well we may consider having his port removed when he has his same day surgery next week to have his dental work done. If it does not go well, then it will just be staying, and as far as I am concerned that is just fine.
Ali had a belated birthday party on Saturday with 16 of her friends. They had a good time, and Diane came down and helped chaperone the evening and spend the night.
THE CLAN AT ALI'S PARTY
Jim and the boys came home Tuesday afternoon from North Dakota. They hunt with Jimmies Dad, and his Uncle Dale and his boys. It was fun to hear them talk about the trip at the supper table last night, we were all laughing. I think they enjoyed themselves.
Ali and Bryce are finsihed with volleyball and football. Bryce will be having some surgery on the 1st to correct his septum and some continuing sinus issues.
ALI AT VOLLEYBALL
WYATT IN THE VOLLEYBALLS AT ONE OF ALI'S GAMES
The varsity won tonights game 27-21. Playoffs begin on Tuesday night. It was a wee bit chilly out tonight.
Send us good vibes for good results from our CT tomorrow!
Kris
Tuesday, October 11, 2005 7:51 AM CDT
At the pace the year seems to be flying by at, Christmas is just around the corner!
Wyatt has not been feeling all that well, he has a cold and has been running temps, and that meant that we had to make a trip in to Club Med (otherwise known as the hospital, in this case Childrens, St. Paul ER) last night. Could I have waited for clinic today? Yes, but could I have lived with myself if he got sicker? NO!
The trip itself to the ER went pretty well. Wyatt was very quiet. (Yes we are talking about the same Wyatt you all know and who talks, talks, talks...) Accessing went very well, and Wyatt did not say a word. Our one bad moment though could lead to future problems at clinic. The nurse that came into deaccess him last night obviously has not dealt with ports, or accessing/deaccessing. The needles that they use are new within the last year. When you deaccess the needle it is self contained inside the plastic portion of the gripper. This nurse did not know that, so instead of pulling back and pulling the needle inside the gripper to deaccess him, she grabbed the entire gripper and proceeded to pull it out. And I was too late with my warning because it happened so fast. Wyatt began crying, which he hasn't done at an acess/deaccess in probaly more than a year. And he wanted out of there ASAP! Which is not a good thing while waiting for Drs. orders, discharge instructions, etc. UUUGGGHHHHH!!!
Hopefully what he has is viral, but temps in the 102's need to be checked, and cultures run. His counts were off. Not exactly sure why that was when they looked good when we were at the University Of MN 2 weeks ago. Dr. Neglia may be able to shed some light on that when we talk with him today.
He sees the leg lengthing specialist tomorrow at Gillette in St. Paul. I believe we will beginning the series of body scans so that they will be able to watch closely the growth of his bones. If his leg length discrepancy stays as it is they will eventually break the growth plate in his longer leg, allowing the shorter one to catch up.
Thursday we will be seeing Dr. Perkins from Minneapolis Childrens Hem?Onc clinic. And then we will have finished our consultations with the Drs. and checking out the clinics so that we can make a decision on where Wyatt will get his care.
Dr. Neglia from the University of MN was very nice. He is familiar with Beckwith-Wiedemann, but not current. But the clinic and radiology departments are not pediatric, and the location of the hospital are big downfalls.
I am desperately trying to finish projects started for Wyatt's Friends and the Curesearch National Wilms Tumor Iniative. My table looks like an assembly line of packages to be mailed out this week. LOL
Jim, his Dad, Justin, and Bryce will be leaving to go duck hunting in North Dakota on Friday.
Justin will miss the football game on Friday, but did score one of the touchdowns at last Fridays game.
Have a good week.
Kris
Thursday, September 29, 2005 7:44 AM CDT
Well this morning is our appointment to see Dr. Neglia at the University of Minnesota Masonic Cancer and Blood Disorder Clinic. It will be nice to have a new perspective on Wyatt's treatment.
I am sorry that I have not updated sooner, this has been a crazy, CRAZY, week.
The walk was on Sunday. And even with so many other things going on in town, including the fall festival at Holy Reedemer, we had a total of $2,364.97 on Sunday. Not bad for pulling it together in 3 weeks, and for our first walk.
Saturday it rained, and rained, AND RAINED. To the point of flash flood warnings being issued. I went to bed thinking about what plan B would need to be, and at 9 am Sunday morning the rain stopped. It started again as we were finishing up drawing for the prizes that were donated for the walk.
There was a table with all of the heros who's families gave permission for us to honor at the walk.
We had 4 heros who were in attendance on Sunday at the walk. Wyatt, Autumn Zickrick, Nikki Schultz, and Matthew Barnett. Matthew was diagnosed with Stage 4 Nueroblastoma when he was 7 mos old. He is now an adult. It was wonderful to see his family come out and be a team for the event. Matt Vosejpka, who was being discharged from the hospital on Sunday, also had family in attendance Mom, Shelly, and Sister Catie walked.
>
THANK YOU TO EVERYONE WHO PARTICIPATED, DONATED, AND HELPED IN ANY WAY WITH THE EVENT.
We learned many things for next years walk.
This is homecoming week for the kids at school. Carter was Junior Royalty for cornation on Monday. 
Well it is time to get Wyatt up and dressed for his appointment and get his "mustard" on his port. (EMLA)
Hugs to everyone!~
Kris
Wednesday, September 21, 2005 7:33 AM CDT
Geez, where does the time go?
Many of you know that Jim and I became team leaders for the state of Minnesota for Curesearch. In June I went to Washington DC for Gold Ribbon Days to meet with Legislature to advocate for funding for childhood cancer research. While there we met personally with Senator Coleman. Since meeting with him he has introduced a resolution for awareness of childhood cancer in the Senate, and is also working on the language for an authorization for $20 million dollars over 5 years for childhood cancer research funding for Curesearch. He is taking the lead, and is also getting other Senators to sign on in support.
It is humbling to know that this all started as a result of us meeting him in Washington DC.
I have been working on the pictures of our heros that we will be honoring at the walk on Sunday. So many beautiful children, some that I have grown to love like my own, and a couple of new children who I am just meeting. It breaks my heart. But I can tell you that these brave heros are the reason that fighting to find a cure for childhood cancer has become so important to me. On one hand I can't imagine not knowing the kids and their families, and on the other I am sad that cancer was the reason that I fell in love with them.
The walk should be fun and also very moving and educational for those who are participating. We are all in a learning curve, and are making notes on how we can improve it for next year.
Last Friday we went to the Twins game, compliments of the Twins, and were able to go on the field before the game for a ceremony for Curesearch. We all had our picture up on the jumbotron. Autumn and her family joined us, we had a great time.
After the scramble of getting the tickets and getting to a specific gate so we could be escorted to the field, we got to meet the Dr. that Wyatt will be seeing at the University of MN. Only 2 Drs. were in attendance, and he was one of them. I am taking it as a sign that I have made the right choice in switching clinics. It was nice to get to meet him and him to get to interact with Wyatt in a neutral setting before his appointment on the 29th.
Football on Friday night. Walk A Thon on Sunday. Uncle Joe is also coming home on Sunday for a few days. Wyatt and Carter are going to talk his ears off.....
Hugs to you all,
Kris
Wednesday, September 14, 2005 9:20 AM CDT
Good morning.
Well things have been super busy here and sometimes I have to wonder if I am coming or going. LOL
The kids are back in school, and playing sports.
Wyatt will be seeing the top Pediatric HEM/ONC Dr. in the state on the 29th. We chose to see him rather than going back to St. Paul Childrens yesterday. With all the clinic related issues we have been having the need for change has been so apparent for months, but because of fear of the unknown, and not wanting to disrupt Wyatt's rituals and routine we have been putting off making the decision. The last fiasco sealed the deal so to speak.
I also know that when Wyatt was diagnosed with Wilms Tumor that we just went along with what was said, we didn't have the time or energy to look at what was being done, and research Wilms Tumor and Beckwith-Wiedemann. You have this blind trust in the Drs. that they are doing what is best for your child. We were also told that Wilms Tumor is treated the same across the United States with the same standard protocol. This is so far from the truth that it makes me sick just thinking about it.
Now that we have learned so much since his diagnosis we see the mistakes, and know where we should be heading. The shock is gone and we are able to advocate for Wyatt.
We are hoping for smooth sailing and less stress.
On top of that I have been consumed with insurance issues for a week now, and am finally getting all of that in order. The bottom line is that our insurance has changed and we will have more out of pocket expense.
The good news is that Wyatt looks so good, and we are reminded of that much more right now with the kids being back in school, and people who have not seen him all summer telling us that very thing.
We are hoping that when his tests are repeated at the end of the month that we will have no cause for concern and that we can begin a new chapter in this journey with positive news.
Thanks for checking in on us.
Kris
Tuesday, September 6, 2005 10:26 AM CDT
Hi everyone.
Things have been busy here and I apologize for not updating sooner.
It is one of those times when I really do not know much more than before. We will rescan and repeat the tumor marker test. We do not see our oncologist until the 13th, so we are in a holding pattern.
We requested and recieved a proclamation declaring September Childhood Cancer Awareness Month by Governor Tim Pawlenty of Minnesota.
Thursday I will be meeting with Rep. John Klines office. We did meet with a representative from their office in June while in Washington DC. We live in his district, and of all the meetings we attended, his office is the one that troubled me the most.
Kris
Thursday , August 25, 2005 11:08 PM CDT
UPDATE ON SCANS
Wyatt was terrific today even though it was just dear old Mom because Daddy worked last night and today. He got pictures of his bones, and his scan done twice and did great with every part of it.
There are a couple of areas of concern that the radiologist came into look at herself. She needs to compare them to his other pictures. Unfortunately his last scan done on June 1st was just a renal ultrasound and not the abdominal one that he should of had done so she needs to go back and compare them to the scans done in April. Because he has been complaining when being picked up, and held on your hip, we just want to be extra careful that we are not missing something, because truthfully Wyatt is usually happy, unless you have told him no:) So we are waiting for a call about the comparision.
I went to bed last night after learning that Jacob Duckworth, a triplet from a family in Florida, that we have followed for over a year is losing his fight with cancer. Some of you may have helped send them happy mail in the past. Between scans today and Jacob my heart was heavy. Please keep him and his family in your prayers.
Thank you for thinking and praying for us, we are hoping that the second look reveals nothing and that an MRI will not be needed. The radiologist we see at Childrens is top notch, and we sooooo appreciate her coming in explaining things and also going through his scan completely again for me. It was nice to see where the cancer was removed when he had his partial nephrectomies of both kidneys, and to see where the areas of concern are.
I also asked our genetist, who I absolutely love, for a referral for The University of MN Pediatric Oncology department. I think the time has come for more research into a new clinic.
PLEASE KEEP JACOB IN YOUR PRAYERS!~
Love,
Kris
Wednesday 24, 2005 10:56 AM CDT
Well tomorrow is scan day. And of course today I am making myself sick, and trying to stay busy to keep my mind off of them.
On one hand I tell myself it is routine, but on the other I know that our world can change in a heartbeat at these scans. And today I just feel like it takes SOOOO much energy to be positive and paint a happy face that I may as well acknowledge that I am sick of cancer, sick of taking my child into be screened, sick of dealing with the clinic and wishing I could bury my head in the sand and be done with this nasty disease.
We had a wonderful visit with the Brestels this weekend when we met in Des Moines. The kids miss Jess:) 
ALI AND JESS AT THE IOWA STATE FAIR
Sports are off and running. Both boys are playing football. Ali is playing volleyball. Justin has the Red/White game tomorrow night.
Please keep us in your thoughts tomorrow and pray for clear scans and a fun Red/White game tomorrow night.
Thursday, August 18, 2005 9:27 AM CDT
It's raining, its pouring.......
Wheewwww, we have been busy!~
On Thursday we went up to John and Linda Rohloff's house in Nevis for their BIG 40 birthday party weekend. There was tents, campers, and people everywhere at Camp Rohloff. Geez they are getting old :) LOL Of course being the youngest of the group, I can say that. 
JOHN AND LINDA WITH THE BIRTHDAY CAKE JIMMIE AND I MADE FOR THEM
We have been up to the lake 3 times this summer. Being able to see the Rohloff's and fish, has been wonderful. This time both families were all in attendance, with the kids working and with their social schedules, the first 2 trips we had kids missing from both families. They enjoy seeing each other as well.
We fished, but didn't catch alot. We sat around the fire and laughed at stories from when we were younger. And we had a great time.
Wyatt had a great time as usual. He loves to fish just like Carter. He loves going especially when Megan, a cousin and Emma, Steve's girlfriend are there. 
MEGAN AND WYATT
We were fishing in the boat on Saturday and Wyatt had the wax worm container. I asked him for a wax worm and he turned around and told me, Nag, Nag, Nag.....of course I tried not to laugh and asked again for a wax worm, and he again said Nag, Nag, Nag. He couldn't of possibly heard that from Jimmie now could he?
HEY STOP SQUIRMING, AND SMILE FOR YOUR PICTURE MR. BASS
Monday Ali, Carter, Wyatt, Caty Vosejpka and I left for Lincoln, Nebraska to go and pick up Jessica Brestel. Jessica is Josh Brestel's sister. Josh earned his wings in December after bravely fighting Wilms Tumor. We have become good friends with Steve and Diane, Josh and Jess's parents, and Ali and Jess are the same age and are friends.
Monday night we spent the night at Steve and Diane's. Tuesday we went to a waterpark in Lincoln and also got to spend the afternoon with Hanna Mathis. Also known as Wyatt's Hanner-Nanner. He sure loves both Hanna and Jess bunches. We had a great time, and got too much sun...We got to see Patti for a bit and then after loading up made our way back to Minnesota, but not before the kids tried smuggling Hanna back with us.
WYATT, JESSICA BRESTEL, CARTER, CATY VOSEJPKA, ALI, AND HANNA MATHIS AT STAR CITY WATERPARK IN LINCOLN, NE
Jess is probaly still in shock being in a household with 5 kids. Her and Ali have been busy making homemade playdough, and working on scrapbooks. Wyatt has loved having Jess here, of course Jess has to be the one he sits by, and the one to brush his hair, etc....
We are meeting Steve and Diane in Des Moines on Saturday.
Wyatt will have scans next Thursday. He also is suppose to see the Dr. and have bloodwork done, but the clinic hasn't been able to get around to getting that all scheduled. It got to the point yesterday after waiting 2 days that I called radiology and asked what they had open and then called the clinic and told them that we wanted the 11:00 am appointment on the 25th, could they please fax the order to radiology. The scans are the important part, and we have a wonderful radiologist who lets us know how they are before we leave.
The clinic and Dr. appointment can be put off a bit, seems there are no appointments with his primary available. If I do not hear from them today with an appointment, I guess I will just have to call and speak with a supervisor. It is frustrating to say the least, but the scans are scheduled.
Hope you all have a wonderful weekend.
Kris
Monday, August 8, 2005 10:46 AM CDT
It is a rainy, stormy morning here. It also has been very warm as of late, lots of 90 degree days. That can end any time as far as I am concerned. LOL
Wyatt's lab work results showed us that his AFP tumor marker test is still elevated, but staying in the same range as it has been. The good news is it hasn't increased, and we have found no reason for it to be elevated. The bad news is that we have to respect the test and continue to watch for indicators of why it is elevated. Which means stepped up screenings like we have been doing.
His other labs have stayed in line with previous results. Still have kidney function results that are off and that we will continue to monitor. His hemoglobin has finally climbed into the normal range! WOOOOHOOOO! I cannot tell you how awful liquid iron is, or how hard it is to try and get a 3 year old to take a little round pill.....So we are celebrating this victory.
The Beckwith video is nearing completion and I cannot wait to see the final copy. There was interest from a talk show in New York last week about it, and a copy was Fed Exed to them.
Busy week ahead. And I am also looking forward to sharing some wonderful news with all of you about the Curesearch Iniative for Wilms Tumor. We also will be hoping to meet with Senator Coleman, Represenative Sabo, and Representative Kline while they are home this month for recess. We can make a difference.
WYATT WITH SENATOR COLEMAN IN WASHINGTON DC DURING GOLD RIBBON DAYS
On the homefront, Jimmie bought a pool for the puppy, Josie. She made a splash into the neighbors inflatable one and so she has her very own now. Wyatt and Carter think its a hoot to swim with her, except when she shakes.....
JOSIE ON THE DECK AT JOHN AND LINDA HOUSE IN NEVIS WHILE UP NORTH FISHING
Kris
Tuesday, August 2, 2005 9:11 AM CDT
Good morning.
Wyatt had his AFP tumor marker test and blood work done yesterday. Getting us back on a schedule due to some conflicts with availability of Doctors, etc.
He does so well with having his blood drawn. Sits on Jimmie's lap, looks at the ceiling, and 1, 2, 3, he is acessed. Our nurse also ordered all of the blood chemistries and kidney function tests. I was rather impressed that she was telling me they were being ordered until I got home and seen on our road map we both had forgotten them the last time. So we are waiting for those results. The AFP is actually sent to Mayo Clinic in Rochester. It would not have gone out until today, because it was drawn after the 12 noon pick-up.
When we got home I had 2 packages waiting. One from Curesearch, and another from Flashes of Hope. The Curesearch package was our banners and flyers for fundraising.
Flashes of Hope sent the pictures that they took of all of us while we were in Washington DC. Flashes of Hope, is a non-profit organization dedicated to creating powerful, uplifting portraits of children fighting cancer and other life-threatening illnesses. They provided us with all of the pictures, including 2 8x10's, one in a folder, and a picture CD of them as well, free of charge. They are beautiful!~
Now that we are working on creating the Wilms Tumor Iniative, I am finding that I am more at peace, for lack of words to describe it. It is so wonderful to know that we are going to be able to help in some way to make a difference. I think the feeling of helplessness was overwhelming for me, and I can only imagine how Diane and Steve Brestel and Kevin and Patti Mathis have felt.
I know that through Curesearch, I have helped to make a difference. Senator Coleman introduced the Resolution in the Senate after being made aware of the issues at our visit with him in Washington. And he is also looking at the authorization.
September is National Childhood Cancer Awareness Month. And we are hoping to be able to kick off our fundraising for The Wilms Tumor Iniative.
Ali celebrated her birthday on Sunday. 12 years old on July 7th. Seventh grade. High School. Where has the time gone?
Thanks for checking in on us.
Kris
Monday, July 25, 2005 8:52 PM CDT
Hi everyone.
Wyatt saw the physiotherapist and he thinks that Wyatt's leg length discrepancy has increased a small amount, but not enough to change the lift in his shoe to even him out. He thought he looked well and we will not have to see him for the next 6 months.
I had to reschedule his AFP tumor marker test to Wed because of a conflict with the Drs. schedule. So that will be drawn on Wed. of this week. I am not a fan of delays, but this time it couldn't be helped.
Wyatt saw the dentist again on Friday. He has several cavities, which may be in part due to some chemotheraphy related issues. They did fix one cavity, but Wyatt was visibly shaking, even though he cooperated, and the dentist feels that because we just did a small cavity that was easily accessible, that taking him to the OR to fix the others is in Wyatt's best interest. I would hate for him to become afraid of procedures at this point. He has always been very good about having procedures done. Whether it has been accessing his port, blood pressures, etc. To scare him or put him through a trauma now could make future procedures a nightmare. We will be scheduling that at St. Paul Childrens in the same day surgery center.
We spent another weekend up at John and Linda Rohloff's lake house in Nevis, Mn on the 8th Crow Wing. Just Jimmie, Wyatt, Carter and I went this time. We truly enjoy getting to fish....fish....and spend time with the Rohloff's.
Well I have mixed feelings about the fact that baseball and softball seasons are over except for the parties. The kids love playing and really did have a wonderful time. We will miss watching them in the next couple of weeks.
JUSTIN HITTING AT A AMERICAN LEGION GAME
UNDEFEATED AND TOURNAMENT CHAMP MONTGOMERY 5/6 GRADE GIRLS TEAM (Ali is second frm the right in the top row)
August 15th will start the fall season of football and volleyball. It seems so unbelievable that Ali will be in 7th grade. Where has the time gone? and that means the beginning of the school year......UUUUGGGGHHHHH.
Yesterday we celebrated my Grandma Blanche David's 80th birthday. We had a picnic here in town with all of our family. I cannot remember the last time all of us were together. It may very well have been for my Grandpas funeral. It was a fun time, and cousin Susan did a wonderful job organizing it.
MOST OF THE GRANDKIDS WITH GRANDMA D
Jim and I have been asked and agreed to be Team Leaders for the State of Minnesota for Curesearch. We are honored to be helping to raise awareness of the need for research for childhood cancer research. We must find a cure.
We are also in the process of setting up a National Curesearch iniative for Wilms Tumor Research. Together with Steve and Diane Brestel of NE, who's son, Josh, earned his wings in Dec, we are hoping to make a difference in the fight against Wilms Tumor. This iniative will allow people from across the US to join us in helping to raise money for Wilms Tumor research.
The need to find a cure for ALL CHILDHOOD CANCER became even more apparent today when I learned that friends of ours found out yesterday that their son, Matt, was diagnosed with Leukemia. He played baseball with Justin, his sister is one of Ali's best friends, we sat with them on Saturday at the playoff games. Please keep them in your prayers. I will share his Caringbridge page when it is set up.
Hope you all are having a wonderful summer....As you can see the newest member of our family, Josie, thought it was much cooler inside here.
Kris
Thursday, July 14, 2005 9:27 AM CDT
It has been a while since I have updated, I am sorry. I am in one of those funks, where I have things I want to share, but don't have the words to put what I am feeling here in the journal.
On one hand it has been a nice summer, busy, but nice. But emotionally it has been one of the more difficult.
Please keep the family and friends of Amber Nelson, a classmate of Justin's in your thoughts and prayers. She was killed in a car accident on July 7th near Montgomery. His class is no stranger to death. This is the second classmate killed in an accident, the first was Amber Jirik, and both accidents occured a short distance from one another.
Amber Nelson and Justin were confirmed together in October.
I know that it has brought back painful memories of Amber Jirik's death as well. And I am sure her family is also having a difficult time.
I hope that memories of happy times bring peace and comfort.
Wyatt is doing well, bloodwork next week again to check his AFP Tumor Marker. And we also see the physiotherapist. I am hoping that the Dr. confirms that his clumsiness is due to his leg length discrepancy getting bigger, and not something else.
Its hard not to worry when so many kids are relapsing.
BIG CONGRATULATIONS TO MY 5/6 GRADE FIRST NATIONAL BANK SOFTBALL TEAM ON THEIR UNDEFEATED SEASON!! What a wonderful accomplishment, and great group of girls! They had to come back from behind the last 3 games. Ali has been a good leader for the team. GREAT JOB GIRLS!
Kris
Wednesday, June 29, 2005 10:56 AM CDT
Good Morning.
Jeez, where to begin.....
Wyatt's last appointment went well. His scans and chest X-rays were clear. His AFP tumor marker blood test is still elevated, but not rising, so that is GREAT news. He continues to gain a little weight, not as much as they would like, but he looks and is feeling great for the most part and that is what is important.
WYATT GETTING HIS CHEST X-RAY DONE
He does so well at his appointments. He knows the routine and is usually very cooperative as long as you allow him to help.
WYATT GETTING HIS VITALS DONE
Our trip to Washington DC was exciting, but also depressing. Ali, Carter, Wyatt, Cousin Susie and myself made the trip.
On the drive out we stopped and did some sight seeing at Lakeside, on Lake Erie. It was very hot, and very humid.
I can say that I hope that I never have to drive in PA again, up one Mountain and down another, Warning...bridge maybe slippery.....No offense to any of our PA friends.
Many of you knew that we were going to be attending the Nascar race at Pocono in Long Pond, PA the Sunday before Gold Ribbon Days began as a surprise for Carter. He has had a difficult year, and we wanted to do something very special for him. He did not know about the race until late Saturday night.
We were up and heading to the race by 6am. We did not have problems with traffic on the way there, and were on a bus and headed to the gates in no time. Our pit road passes allowed us to get up close to where the teams were setting up there pit boxes and we got good pictures of the cars as they sat on the grid.
Wyatt actually fell asleep on the asphalt in Micheal Waltrips pit box early that morning after laying down there to protest Mommy using the word no to him. He was the talk of the area for the whole hour and a half he was sleeping there, and I know that there are tons of people who have his picture! Susan and I were also lucky enough to have our picture taken with the late Dale Earnhardt's brother, Danny Earnhardt, who works on the #15 of Micheal Waltrip's crew.
Both Wyatt and Carter had a great time at the race. The look on both of their faces as the the fly overs during the prerace, and the cars were fired to start the race and began the pace laps was awesome. Wyatt was standing on the bleachers arms pumped in the air and jumping.
The walk back to the van, well that just stunk....big time. It was a long, warm day, as Susan can attest to by her sunburn, but we all had a good time.
Gold Ribbon Days was not what I was expecting. I had to hoped to advocate specifically for Wilms Tumor, and it became crystal clear very early that Childhood Cancer in general was in desperate need of funding, and Wilms was still going to be an "Orphan Cancer."
Steve, Diane, and Jessica Brestel, Angel Josh's family also were in attendance. Ali and Jessica are the same age and they hit it off. One would never know that the two of them have not know each other for their entire lives. It was fun to watch all 4 kids interact and enjoy themselves with help from Susan.
By the time we made our rounds to Capital Hill, Steve, Diane, and I had been made aware of a way that we could raise money to directly fund Wims Tumor Research, and I think all of our hearts were made lighter knowing that. But I must tell you that a big part of our hearts were with the Mathis family, as we checked in on Haley, and talked with Patti.
We met with 6 differnet Legislative offices, but only Senator Norm Coleman met with us himself. He impressed me. He also has taken up the Senate side of a resolution that was presented on June 28th. He also is showing interest in the $20 million authorization for 5 years as well. It is humbling to know that we have played a part in this.
We had some impressive speakers, Senator John Kerry, Senator Jeff Sessions, Senator Blanche Lincoln, Congressman Micheal McCaul, and Miss America Deidre Downs. This was Steve's favorite part of the trip......because I am sure the Washington Monument moment was not. LOL!~
Wed. evening we got to meet the Parkers. Harlei, Lexus, Angelique and Ricky. Carter and Lexus had a blast, and it was so nice to be able to spend a little time with them. I sure hope the girls had as good of time as we did:)
The kids were most impressed with the pool being on the roof of the hotel and seeing the Capital at sunrise. Ok, so maybe it was just the pool.
We went onto the Skyline Drive in Shenandoah National Forest and The Blue Ridge Mountains on our way home. What an incredible site that was.
After returning home and sleeping in my own bed, we began to plan to go to NE. Haley earned her wings before we got there. As much as we would of liked to have seen her beautiful, smiling face, we know that she is pain free and in heaven smiling down on us.
We went down Thursday and spent time with The Brestels. And we got to spend time with Kevin, Patti, and Hanna. Wyatt loves them all, Jess and Hanna(otherwise known as Hanner-Nanner) are big on his list. He likes to get Steve talking, and had Kevin helping him Saturday at the pool. He was good medicine for all of us.
I can't begin to tell you how much Haley is missed here. I find myself thinking of her, Josh and Brooke. And I can't begin to tell you what steadfast friends I have found for all the wrong reasons.
We are working on a National Campaign with Curesearch to raise money for Wilms Tumor Research. Steve and Diane Brestel will be helping chair it with us. We are going to make a difference. I hope that you will help us once we get underway.
Love,
Kris
Tuesday, June 21, 2005 10:11 AM CDT
**********JUST WANTED TO LET YOU KNOW THAT ALI, WYATT AND I ARE STILL IN LINCOLN, NE. WE WILL BE HOME THIS WEEKEND AND THEN I PROMISE TO UPDATE YOU ALL WITH WHAT HAS BEEN HAPPENING.
HALEY'S MEMORIAL SERVICE WAS BEAUTIFUL, AND WYATT WAS ABLE TO SPEND LOTS OF TIME WITH HIS HANNER-NANNER, OTHERWISE KNOWN AS HANNA:) WE ALSO SPENT TIME WITH STEVE, DIANE AND JESSICA BRESTEL, ANGEL JOSH'S FAMILY. WE JUST WISH THAT IT WAS FOR DIFFERENT REASONS.
It is with a heavy and broken heart that I come here to let you know that Beautiful Haley has earned her wings this morning and is flying cancer free in heaven.
I will never begin to understand cancer, it does not discriminate, and now it has taken the life of another one of our Wilms family.
Sweet Haley, we love you. Your smile lights the world and warms my heart. You and your family are such an inspiration to all of us. We are proud of you, and as much as we wanted you here with us, we would rather you be at peace and cancer free.
Please send your love to HALEY'S FAMILY
Sweet Dreams Haley,
Kris, a.k.a The Crazy Lady
Tuesday, June 14, 2005 6:04 PM CDT
Hi everyone!
Just wanted to let you all know that we are in Washington DC advocating for funding for Childhood Cancer Awareness. Tomorrow we will be going to Capital Hill and meeting with legislature.
Sorry that I haven't been better about updating, it has been hard to get on a computer from the hotels and during our drive out and back.
Please pray for Haley, she needs a miracle and today rather than tomorrow.
Hugs to you all,
Kris
Thursday, June 2, 2005 6:51 AM CDT
Wanted to let you know our good news! Scans and chest X-Ray looked good:)
Blood work, and AFP Tumor marker test results are pending, and I know that the AFP did not make the courier to Mayo yesterday, as we had a long wait in clinic.
Thanks for checking in on us, we REALLY APPRECIATE YOUR SUPPORT!~
Love,
Kris
Wednesday, June 1, 2005 9:37 AM CDT
Well it was a rather sleepless night......not sure which was worse, the crying puppy, missing his brothers and sisters as Wyatt puts it. Or me fretting about the scans being done this morning and what damage bad news could do to our plans to DC, and its life changing consequences.
We will be off here soon for Childrens, meanwhile the house is alive with activity. The new puppy, Josie, I believe she is going to be called, is happily chasing Carter around the house while Carter sits on his perch high on the couch, so that she is not chasing him. Oh, he calls her, but is leary of her nibbling on him. Yesterday he tried to carry her around by rolling his shirt up like he does for the bunnies at Grandpas, and putting her in there. Needless to say "Pork Chop" is a bit bigger than one of the bunnies.
Will update later on today hopefully.
Kris
Friday, May 27, 2005 10:19 AM CDT
Good Morning!
It is a Gillette Childrens Hospital morning, and that means free time to update all of you:)
Bryce was released from the hospital yesterday, and after being so very bored, he is happy to be home, and has his appetite back. I know he is thankful for a very well stocked fridge that is available 24-7.
At this point there was no growth from the cultures, so they believe it is viral meningitis, but they also sent some other tests to the infectious disease specialist at Minneapolis Childrens, and those tests are not back as of yet. Also of concern was the fact that all four of the older kids had high temps, in the 103's within the last two weeks, and Bryce's illness just seemed to linger from that time on.
He did miss the last week of school. He was excused from his finals, and missed the last day of school ritual trip to Valleyfair.
Thank you to all of you who visited, called and sent well wishes to him.
So school is out. Wow! This year has flown by. It is very hard to believe, and sad at the same time.
I hope to be able to enjoy this summer with the kids. Lots of baseball, and softball games to take in and enjoy. Fishing too....
Bryce is playing in Lonsdale again this year. Justin will be playing Legion on the Montgomery/Lonsdale Legion team and is already playing with the Town and Country team from Lonsdale.
Ali is playing softball in Montgomery. I am a co-coach for her team.
She left yesterday for Arizona after graduating from 6th grade. She went with Grandma Rech to see Uncle Joe and his family. She will return the evening of the 9th, and then will leave with us to Washington DC on the 10th. She is going to be a world traveler.
Next week we will be welcoming a new member of our family. A black lab puppy. The memo that Mom did not want anymore pets has been ignored. HeHe.
Wyatt is doing great, scans and blood work on the 1st of June. He will soon be missing Ali I am sure. He was very upset yesterday when he woke up after falling asleep on the way to the airport, to find out that we had already dropped Grandma and Ali off.
I will be adding pictures later on today.
Hugs,
Kris
Tuesday, May 24, 2005 11:28 AM CDT
Sorry it has been so long in between updates.
Wyatt is doing well and will be in for scans and blood work on the 1st of June.
Bryce however has not been feeling well, and has meningitis, hopefully viral. We are waiting for the cultures to come back. He is at Queen of Peace after 5 days of headaches, vomiting, and 3 ER trips. 2 to Queen of Peace and one to St. Paul Childrens.
I will update as I know more, and return emails and phone calls then as well.
Hugs,
Kris
Tuesday, May 10, 2005 9:52 AM CDT
Good Morning!~
It is a Gillette Day again, and free time to update all of you.
We had a busy weekend, and have a busy week ahead. Baseball games everyday but Wed. and a sports meeting Wed. evening. The rain makes planning crazy, because you never know if they are going to be playing or practicing. It is hard to plan ahead when you do not have a clue what is happening.
The filming for the DVD went very well. Wyatt, sporting a new haircut, of course was all smiles and enjoyed getting to ride his Gator, hit some balls and shoot some hoops for Phil, the producer.
I am excited for the DVD to be finished, and am hoping it is done so that I can take it with to Washington DC. Beckwith-Wiedemann is also an "orphan syndrome" that sees very little research dollar. It would be wonderful to have it to share with them while there.
It was wonderful to see Anita again. Anita is from the Beckwith-Wiedemann Childrens Foundation and has been working on the DVD project. We had the opportunity to meet Anita in St. Louis at the conference and clinic last July. Because Wyatt's counts were low and we were also at conference with people from outside of the US, Wyatt was not able to spend alot of time with members of the group.
Wyatt was wearing the train shirt that she sent him from Canada that morning to go get his hair cut. When we got home he did not want to wear the clothes that I had picked out for him to wear for the filming, it was too funny.
Yesterday Wyatt had to make a trip to see Dr. Judy, he had a rash on his back, legs and tummy. We are hoping it is hives, but they are not disappearing, so we have to watch them and let her know this afternoon if they are still there.
I have begun work on the scrapbook for Gold Ribbon Days. If you are a Wilms Family please email me and share pictures so I can include your family in the scrapbook. I will be emailing or calling families in the coming weeks if you have not already heard from me.
Next week is city wide garage sales. We are planning a bake sale, and we have had people donating items for the garage sale to help us pay for the trip to DC. Thank you to the businesses and friends that are helping with this project! We greatly appreciate everyones help.
Hope that everyone has a good week, and that it stops raining, otherwise I may need a baler for my yard! LOL
Hugs to everyone,
Kris
Tuesday, May 3, 2005 9:43 AM CDT
Good Morning.
Once again I am taking advantage of a little down time to update the journal while here at Gillette Childrens Hospital in St. Paul. This place is hopping this morning. Lots of kids everywhere.
It has been a busy week of Drs. appointments and ER visits for the kids, everyone except Wyatt has been in. (KNOCK ON WOOD) Ali and Carter have had temps in the 103's. Ali was seen at Childrens St. Paul ER on Friday night, and Carter at Queen of Peace ER in New Prague on Saturday night.
On Saturday afternoon we attended the NICU Reunion at Childrens Hospital in St. Paul. We were able to see and talk to Gerry and his family who were in the NICU next to us during our stay. It is hard to believe that Wyatt and Little Gerry are 3 already, when it seems like we were just celebrating no monitor alarms going off, or victories in feeding issues. It was nice to see them, and to hear that they are doing well.
However our trip was cut short when Carter in tears told us he was not feeling well, and after feeling his head it was obvious he had a high temp. I had a thermometer in the van and tylenol, which was a good thing because his temp was over 103. Carter had been to see Dr. Judy the previous Monday because of a cough and cold we had not been able to shake for weeks. She felt he had crackling in his upper airway and put him on an antibiotic, Zithromax, which he had finished on Friday.
A trip to the ER, blood work, and chest x-rays and we found out that it has progressed beyond bronchitis and is more like pneumonia. He has missed the last 2 days of school and will be having repeat chest x-rays this afternoon with Dr. Judy at Cannon Valley Clinic in Faribault.
Sunday, which was May 1st we were greeted with snow showers. YES SNOW SHOWERS! EEEEEKKKKK! The boys had games scheduled for yesterday as well that were cancelled because of the cold weather. Hopefully today will bring some warmer weather and a return to spring.
Filming is Friday for the Beckwith-Wiedemann Syndrome DVD.
For all of our cancer families I hope that if you are able that you consider joining us in Washington DC for Gold Ribbon Days June 13-15. It will be a powerful opportunity to advocate on our childrens behalf.
Hugs to all of you,
Kris
Friday, April 29, 2005 10:59 AM CDT
I am taking advantage of a little free time while at Gillette Childrens Hospital to update all of you.
Wyatt's test results showed us that he is pretty much staying the course for his values. His AFP tumor marker test was one tenth higher than his previous test. So although it is still elevated, it has not gotten any higher, and that in itself is very good. His hemoglobin has come up a little also.
His chemistries, and kidney function tests continue to be off and so we have made an appointment to see the nephrologist who we have not seen since he diagnosed Wyatt with Hemihypertrophy at about 3 months. He was surprised to learn that Wyatt had Wilms Tumor and that he had partial nephrectomies to both kidneys as well. How he was left out of the loop I do not know. But we had to go through channels to get Wyatt in for an appointment because he was scheduling out so far into the summer, and Wyatt needs to be seen sooner rather than later.
It has been a busy week. Next week will also be busy. Friday the 6th of May Jimmie, Wyatt and I will be being filmed for the Beckwith-Wiedemann DVD. This DVD will be available on the Beckwith-Wiedemann Childrens Foundation's website. It will also be available to parents of children with BWS, and of most importance to Drs. and medical staff. We are hoping that it becomes a great educational tool, and makes a difference for families who need the education, support and guidance. we are humbled and honored tht we were chosen for the DVD.
Jimmie and Grandpa Rech were another day older on the 27th. We had dinner at Mom and Dad Rechs. Of course Wyatt thought it should be his birthdy for a while, but once we told him he could give Grandpa Birthday spankings he was happy to let it be their birthdays.
We are getting excited about our trip to Washington DC for Cure Search's Gold Ribbon Days June 13-15. We will have the chance to meet with legislature to advocate for more funding for research. This is very important for families with Wilms Tumor because of the small number of kids it affects limits the amount of money used for research.
We will also be seeing friends while there. Some for the first time. And we are very excited about that:) Some of them are more like family to us.
Cousin Susie will be going with Wyatt, Carter, Ali and I. "SUSAN!!", as the kids lovingly refer to her, has been with us for quite a few family excursions.
Hard to believe we are within a month of the kids being done with school.
Please help us celebrate that Rachel Hansen is home. Haley and her family is in San Deigo for treatment in Mexico. And beautiful Lexy Flory earned her wings this week. Keep their families in your thoughts.
Love,
Kris
Wednesday, April 20, 2005 9:00 AM CDT
Good Morning.
It has been a trying week. And the fun continues this morning as we are going to clinic for testing. Wyatt needs to have his AFP Tumor Marker testing repeated this morning, and they will also be running the tests that were forgot the last time we were at clinic.
I also had requested information about the LOH from the pathology results that were sent to Childrens in Chicago to Dr. Pearlman, the pathology expert for Wilms. Hmmmmmm, they must have forgot about that request as well. Heavy on the sarcasm here...
But on to brighter subjects...Wyatt and Carter have enjoyed being outside and playing in the sunshine.
WYATT DRIVING HIS BELOVED GATOR
Here is a couple more pictures from the Duck House Building Project.
POWER TOOLS!!
CARTER AND WYATT WITH THE FINISHED PROJECT
Ali is done now with Junior Olympic volleyball.
MONTGOMERY LONSDALE JUNIOR OLYMPIC VOLLEYBALL TEAM ALI IS #13 FRONT ROW
The boys are both playing baseball. My streak of making it to all of their games is over, most nights they are both playing at the same time. If Jimmie is not working or goes in after the games, we split up. Wyatt is going to be a baseball player for sure!
BRYCE PITCHING AT MEMORIAL PARK
Wyatt, who everyone knows, was being taught some intersting things at the park, like throwing the ball from the top of the bleachers and watching the 8th graders running to get it. Or maybe Wyatt was teaching them....
SEEING THE LIGHT
The lawn needs to be mowed, must be a sure sign spring is here :)
You know I had a conversation again with a friend who asked why I follow other children? And wasn't it hard watching these children suffer and die? Yes it is hard. And it makes you feel helpless many times. But I know that I can make a difference and have helped others. And knowing that and helping others makes my heart feel good, and my stress and anger with cancer easier to deal with.
Not one other parent has asked to walk this road. It is so much easier to be on this journey knowing I am not alone.
I TRULY appreciate and find strength in the messages that are left here in this guestbook. Thank you to each of you who checks in on us, and sends us well wishes.
I need you to help send some well wishes and warm thoughts to another family that lives a short 15 minutes from us and have a beautiful spitfire RACHEL HANSEN who is at Childrens Hospitals in Minneapolis and who had to be placed on a ventilator this weekend. Her family truly needs our support and today is also Rachel's 5th birthday!!
I am going to leave you with this letter from Cancer. Have a good week, enjoy spring, and enjoy your kids:)
Love and hugs,
Kris
LETTER FROM CANCER
I am what you would call a thief. I know I am not wanted, but I come anyways. I silently sneak my way into your life when you least expect it, I take parents from children and children from parents. I seek to destroy those in whom you love, and split up families. I wait silently in the darkness, until I am discovered. I scorn you optimistic attitude. I try to place doubt into your mind, and hopelessness into your heart. My relatives do the same even though we all look differently. You can not see me in the mirror. You can not wish me away. I am not wanted, and it bothers me none. I will make you sick and the sadness consuming. I attempt to stop you from your every day activities. Yet you still smile! Yet you do not allow the hopelessness to consume you. Your strength is stronger than ever before. You are building bonds, which can not be broken even in death.
You wake up each morning, happy to be alive. You find joy in the things that I can not steal from you. I can not take your family, as much as I can't stop the sun from shining. As hard as I have tried, I have not been able to to steal you joy! You have conquered me, in the place that it hurts the most. You have beaten me, in ways I never expected. You have won the battle. Though I still consume you, I have not consumed your heart. Though I run throughout your body, you have not allowed me to take away the things that mean the most to you.
Sincerely,
CANCER
Tuesday, April 19, 2005 4:15 PM CDT
Well I know that the news you have been finding in our guestbook has not been happy as of late. But I need you to help send some well wishes and warm thoughts to another family that lives a short 15 minutes from us and have a beautiful spitfire RACHEL HANSEN who is at Childrens Hospitals in Minneapolis and who had to be placed on a ventilator this weekend. Her family truly needs our support.
Love,
Kris
Thursday , April 14, 2005 8:11 AM CDT
****PATRICK COZAD, ONE OF WYATT'S FRIENDS, WHO WAS BATTLING WILMS TUMOR EARNED HIS WINGS YESTERDAY. PLEASE KEEP THEM IN YOUR PRAYERS. AND IF YOU COULD SIGN THE GUESTBOOK TO LET THEM KNOW YOU ARE THINKING ABOUT THEM, THAT WOULD BE WONDERFUL.
Tuesday , April 12, 2005 9:48 AM CDT
The sun is shining! Hurray! Yesterday two very precious angels were laid to rest. Erica Vandereide, and Alex Bauer. I wish that I could have attended both services.
Erica's was beautiful. Many tears were shed as we honored her. It is not goodbye. Erica and Alex live on in the lives of each person who loves and knows them.
Monday, April 11, 2005 11:15 PM CDT
Rain, Rain go away.........
The rain it seems is a good indication of my mood. It has been a very difficult weekend for me.
Wyatt has truly enjoyed being outside and riding his gator and just seeing all the neighborhood kids. Jimmie, Carter and Wyatt had fun building a duck house on Saturday. Got some too cute pictures to share with all of you.
Thursday afternoon I got a phone call from the director of IRIS, Infants Remembered In Silence, a support group that we became a part of when our twins, Emilie and Randi, died in 2000. She was calling to tell me that a family that lost a little girl, Kelly, shortly after we lost the twins had asked her to call and let us know that their 3 month old daughter, Erica, had stopped breathing at daycare. She was at Childrens Hospital in Minneapolis in the PICU.
Thursday night I took a package up to Jay and Marianne, Erica's parents. I also took one for ALEX BAUER
and his family who were on the 8th floor. Baby Alex had Wilms Tumor.
It was difficult for me to walk into Childrens. I had not been there since meeting with the Neonatologist to discuss the twins deaths. By the time I got there I had pretty much made myself sick. But I talked with Marianne's Mom and was okay, and by the time I went up to the Oncology floor to visit with Rochelle, Alex's Mom, and Isaiah, Alex's brother I was fine.
I had a wonderful visit with Rochelle, she is a strong person, who loves her family. I truly enjoyed Isaiah, who is a handsome young man. And I was so honored to get to see Alex, who is even cuter than his pictures. He has the most adorable cheeks. I left there shortly after 10 pm.
Alex earned his wings around 4 am, and Erica earned hers about 4 pm. Please keep both of their families in your prayers.
Losing a child is very difficult. For Marianne and Jay they are traveling on a road that they have been on before. It does not make it any easier, in fact I believe it makes it harder.
I will not begin to say I understand, because I don't. I feel helpless. I ache knowing two precious children have earned their wings, and that their families will be without them here on earth.
Kris
Monday, April 4, 2005 7:50 AM CDT
Good Morning!
Grab a drink, get comfy this is gonna be long.......
Here is that long awaited update. I am sorry that I have not gotten to it sooner. It just seems like when I have something that is bothering me it becomes harder and harder to sit here and type. Finding the words to express the feelings can be difficult:)
We have been busy here. As I sit here updating you, the 4 oldest kids are on the way to school, or should have arrived by now. And this means what? JUSTIN PASSED HIS TEST AND IS DRIVING! Is Mom alittle worried, UHHHH YA! Justin once said I didn't trust him driving, or maybe he thought him in general. And I had to explain to him that it is not him that worries me. Stuff happens, it could happen when I am driving. Having driven longer than him, I may react differently than him. I know that there are times when you have no control over the other driver. He is excited to be allowed to drive, and become more independent.
What else does this mean? Well, hey I am not getting any younger, and we have a 16 year old in the house....... He turned 16 on the 24th of March.
NOW ONTO WYATT!~
He has been doing pretty well. He has been enjoying getting outside. He loved playing in all the snow we got a couple of weeks ago. And now that it has gotten nice outside we have to be careful he does not sneak outside, and he tends not to want to come in once he gets outdoors.
He has had alot of bruising so I will be calling the clinic this morning. Low Platelets I am sure, although I haven't seen any Petechiae.
As you saw in the picture, he did sit on The Easter Bunnies lap. He didn't acknowledge him, look at him, or say a word on the way up to sit on his lap or back, but just getting him close to him was a victory! He pretended to be asleep in hopes that The Bunny would ignore him.
The hunt was located in the elementary school because of our blast of snow. Last year we had his "purse" with his IV pump in it and had to closely follow because he was getting fluids and IV meds. He had just been released from the hospital. This year he was off and running, and impatient to start. Both him and Carter had a good time.
I received an email last week "writing to ask whether or not you are still willing to have your family's story filmed for the DVD the Beckwith-Wiedemann Children's Foundation is producing through Phil Bransom Productions here in Portland.
We have selected your story because it encompasses the discovery and successful tratment of Wilm's as it relates to BWS, one of the things many new (or not so new) parents fret over when first diagnosed."
Jimmie and I have agreed to have Wyatt included because it is our hope that we will be able to help other families, but also other genetists and medical professionals. The video will also be on the BWS website.
We are humbled to be chosen and truly do hope that it will make a difference.
The community of support that is made up of BWS families has been wonderful to us. We met another family in St. Louis, Tara and now 16 month old Drew, who just recently had a scan find a suspicious growth on the lower lobe of a kidney. I have been glad to answer Tara's questions, and share our story with her. Please keep them in your thoughts.
I also wanted to share with you that we are making plans to go to Gold Ribbon Days in Washington D.C. in June. CureSearch Gold Ribbon Days brings together childhood cancer patients, families, survivors, advocates and health care professionals from across the nation to raise awareness of childhood cancer and the need for a cure.
Held in Washington, DC each year since 2000, Gold Ribbon Days activities include keynote speakers, advocacy training to prepare Gold Ribbon Days participants to meet with members of Congress, a Congressional Reception, an activity program for children, sessions on topics of interest, including survivorship, the needs of siblings and a special session for families who have lost a child to cancer.
In order to help us share our story with offices on Capitol Hill, they welcome and encourage us to bring something to leave behind for each office. The “leave behind” could include copies of pictures, a personal letter, card, story, poem, drawings, or anything else that helps us to paint a picture of our experience with childhood cancer. Our stories are very powerful and by giving each office something to keep; our story will have an even greater impact and leave a lasting impression.
My lasting impression is to organize and design a scrapbook of Wilms Tumor families. So if you are one of our families, please take a moment and email me a picture and anything else that you would like to include for me to present to Congress while we are there. I will be contacting all of you, and hoping you will all participate.
It would also be nice to have other families attend as well. We are happy that we will be meeting friends for the first time, and that we will be seeing others again.
With only 450 kids a year diagnosed with Wilms Tumor in the US, we fall short of the list for research $$ and drug companies see no $$$ signs in developing new drugs for treatment. The last National Wilms Tumor Study closed in the fall of 2003. I would like them to know that our children need the research, the new drugs and treatments.
Please help us make a difference!~
Baseball season is underway, both boys play tonight. Justin got back Saturday from his trip to Florida with the baseball team. They had a good time, nice weather and I am sure it is something that he will never forget.
Everytime Wyatt saw an airplane he was sure Justin was on it, and we needed to go pick him up. He missed his brother.
Please keep the following in your thoughts and prayers:
Tara and Drew, that they will get answers and that it is not Wilms Tumor
HALEY, who will be celebrating her 12th Birthday on the 10th. A card shower for her and Hanna is underway, if you would like to participate click on the link to her page that has the address to send the cards to.
Alex Bauer. Baby Alex was diagnosed with Wilms Tumor in late January 2005. After intense rounds of chemotherapy to treat his remaining lung and brain tumors, they were disappointed to find out they were still growing. They are now concentrating on keeping Baby Alex comfortable while he is waiting for his eternal life with Jesus. He is being treated at MPLS CHILDRENS. Please pray for a pain free and peaceful journey before he earns his wings.
RACHEL HANSEN Rachel is from Webster, MN. She is currently undergoing treatment in CA.
And all of our caringbridge and Wyatt's Friends families that have become a part of our family.
I suppose if I updated more you would not all be asleep by now:)
Love,
Kris
Tuesday, March 29, 2005 8:14 AM CST
OKAY, I KNOW THE UPDATE POLICE ARE AFTER ME!!!!
MUCH GOING ON, LONG UPDATE TO COME.
LOVE,
KRIS
Sunday, March 13, 2005 8:37 PM CST
Well I have to tell you that I am not sure where to begin. And I haven't updated, because I just did not know how to put into words what I am thinking and feeling.
It has been a busy week, full of many emotions.
Lets start with some of the good. Wyatt had scans and blood work on Tuesday. I am happy to report that his ultrasound, and his chest x-ray were ok, and that his AFP Tumor Marker Test came back elevated, but it is down from the last draw. HURRAY, HURRAY!!!
Sometimes, well most of the time it is not the scans and bloodwork that are stressful, as the clinic itself....(for those of you who have been checking on us for a while, I am sure that you know where I am going with this line of thought)
Wyatt had his ultrasound done. We refer to this as Wyatt getting a "jelly belly." He does very well for Donna, who is our regular tech, and who does a wonderful job with Wyatt. She talks to him, and makes him feel comfortable. It is nice to have someone who has "kid skills!" His ultrasound was good!
Wyatt getting his "jelly belly," or his ultrasound done.
Then after Donna came back in to tell us everything looked good, I asked if we were going to the lobby to wait for Wyatt's chest x-rays. She said she thought we were because that was normally what we do. So we went to the lobby and Donna checked on the Chest x-ray. No order. They had to call HEM/ONC for an order. After the chest x-ray we went to our appointment at the HEM/ONC clinic, after waiting for nearly an hour, and knowing that the courrier that picks up the AFP tumor marker blood test for Mayo arrives at Noon, I approached the desk at 11:40, and asked if they remembered that the courrier came at noon. Our nurse replied that it would just go out the next day if we didn't get it drawn before then. Bet you can see the stem coming out of my ears, can't ya?
Finally at Noon we were taken back to a room, and at 12:30 our nurse came in to draw blood. Over an hour and a half wait to have the nurse come in.
Wyatt having his blood pressure taken, a squeeze, along with his temp.
Jimmie helping Wyatt flush his port after having his blood drawn for labs.
Wed. my love of the clinic grew even more when I got the lab results and found out that a portion of the blood chemistry tests had not been ordered, and that they could not be run from the blood that they had.
Because I have been concerned about the values from his blood tests I had scheduled an appointment with our family Dr. to go through the results of his blood work. And then I found out we were missing some of the needed tests. It was frustrating, but Dr. Judy took the time and explained things to me and agreed that Wyatt needs to be put on iron, and monitored because his body is not processing iron correctly. Such a simple solution to a problem he has had for a year, but that was never addressed.
She also called and got the results of the AFP tumor marker test for me so that I would not have to wait. It is still elevated, but is down from the last time it was drawn. A Victory!!
So I am taking it as a sign that I need to do my homework and start looking for a new clinic or advocating for change at ours.
Now to the heart breaking news of the week.
As many of you know, we have come to know some very special families through Caringbridge. 2 of the families that we have met along this journey who have also been affected by Wilms Tumor, The Mathis Family, and The Brestel family could use some love and support.
The Mathis family, who's daughter Haley, has Wilms, is having a difficult time. She was at St. Judes and now is home because she has bleeding in the brain that has prevented them from continuing chemotherapy. Her parents have been told that she will not survive her cancer. They are a wonderful family who has not given up.
This has been extremely difficult for me. And of course it is extremely difficult for her and her family more importantly.
For me it brings up memories of making agonizing decisions for your child. And the guilt that you go through wondering if you have done the right thing for your child. Always second guessing yourself, and then living with the choices you have made. It has made me think of Emilie and Randi, and the heartwrenching choices we were faced with. But I feel for Patti and Kevin Mathis, as they are making the decisions and hope that they find peace in the choice of treatment that they choose.
And as I too wonder about my decisions, I know that the Brestel family cannot help but be affected as they watch Haley fight the same monster that took their happy, brave son Josh in December, just 3 short months ago.
Rachel Hansen, who lives in Webster, which is within 15-20 minutes of us is getting ready to go to California to begin treatment as well. She has Ewings Sarcoma, and her parents too are searching for that miracle to cure their daughter. She is a beautiful little spitfire who's smile will melt your heart.
I also want to say that our family, as well as Justin's Sophmore Class and their families are thinking of the Jirik family from Lonsdale, who's daughter Amber was killed in a car accident 3 years ago today on her way to school. She will always be near and dear to all of us.
Please keep them in your thoughts, close to your hearts, and help us find a cure for our kids.
Kris
Sunday, March 6, 2005 3:57 PM CST
********Just wanted to let you all know that the scans looked ok, but we are waiting for the blood work. I have pictures from yesterday that I will be posting later today. Thank you for your well wishes!!~
WOW! It is absolutely gorgeous outside today. Near 60 degrees out, and looking mighty muddy:)
Hopefully spring will just be around the corner.
Wyatt has appointments at Childrens St. Paul on Tuesday, March 8th. We go to Radiology for an ultrasound, and chest x-rays. Then to HEM/ONC for blood work to check his counts, kidney function and the pesky AFP Tumor Marker blood test that continues to stay elevated. He will also have an exam while there.
I have tryed so hard to not get myself worked up about these tests. And up until this weekend, have done a pretty good job of it, but have to say that the anxiety level is getting higher.
Please keep Wyatt in your thoughts.....
Yesterday Wyatt went to Grandma and Grandpa Rech's while I took the other kids to the Gophers Baseball DQ Classic at the Dome. They were able to go on the field for a baseball clinic before the game and enjoyed it.
We are down to a Basketball Banquet tomorrow for Justin, and a tourney for Ali on Saturday in Glencoe for Ali. Then we will be transitioning into baseball and softball. The picture below is of Allyson and Justin that was taken at Waterville at the Basketball sectional game.
I think Justin and the rest of the baseball players are getting excited about the trip to Florida at the end of the month.
Justin's birthday is coming up on the 24th, which means he soon will be driving.....fair warning.....Lord have mercy. LOL
Carter will be happy that the snow is melting and that he will be able to get that bike down and put a million miles on it riding in the culdesac.
And Wyatt will be waiting to get his Gator out.
Hugs to everyone,
Kris
Monday, February 28, 2005 3:02 PM CST
Hi everyone.
Been busy here, funny, what is new. But relief is in site. We will be getting a bit of a break now that Basketball is winding down and baseball is just starting.
Wyatt has been well for the most part. Some temps and a swollen lip from him biting it.
Thank you to all of Wyatt's Friends that donated to the Pohl Family. They lost their precious son, Bracken this last week.
Rachel Hansen from Webster also needs your positive thoughts, as her scans showed new areas of concern, and her family is searching for a direction to take.
Please keep these families in your thoughts as we keep them close in our hearts.
Kris
Friday, February 18, 2005 12:41 AM CST
Hi everyone.
I am running from the update police......lol. Forgive me for not updating.
Today marks the one year anniversary of Wyatt's first chemotherapy treatment. He recieved it while hospitalized for his surgery to insert his port and for fever.
Seems hard to believe it has been a whole year.
I have to tell you that the happy, smiling little boy who is so full of love for others is a year later sharing that love.
We go to school for activities, and everyone knows him. High schoolers from all grades know him, the basketball players too. He loves being there as well.
He has been doing good the last two weeks. A few temps, but nothing serious. He does however have an adversion to the word no. He has gotten away with things for so long that he just hates being told no, and does not feel he needs to listen.
He did see the Physiotherapist, Dr. Marshall Taniguchi, at the Pediatric Rehabilitation Clinic at Gillette Childrens Hospital. He thought that Wyatt looked good. He feels that his gait improves significantly with the lift in his shoe. He also has some tightness in the muscles in his legs, from the hemihypertrophy and also probaly from the vincristine. We will be seeing a physical therapist to learn how to deal with these issues, and will be seeing the Dr. in 4-6 months.
He is so hard to get into, that I needed to make the appointment right away because he books out that far.
We have been busy here with sports, nothing new.
Here is a picture of Carter at one of Bryce's games this week. He has been busy, and hoping that Dad will be able to take him ice fishing. He will be playing some basketball on Saturdays starting next week.
Ali had 2 make up games last Saturday. They won both games, and she has basketball tomorrow. She will be attending a young writers conference in March at Bethany College in Mankato.
Bryce's team won third place in the Minnesota River Conference Tournament last Saturday. Congratulations to them and we hope that Jared, one of Bryce's teammates, is feeling better soon. I took him to the Orthopedic Dr. yesterday because his hand was stepped on during the game on Tuesday.
Justin has a game tonight. He too had a trip to the Dr. yesterday. His quad's have been bothering him for 3 plus weeks, so he will be seeing a physical therapist for a while, but will be able to play in the meantime. They had a fantastic Junior Varsity win on Tuesday night in Gaylord against Sibley East. They won in double overtime. Justin was also chosen as Redbird of the week for his Sophmore Class.
This is the Daytona 500 weekend. I am glad that racing is back, and cousin Susie and I will be watching the race here on Sunday.
A big thank you to the Mathis family, Haley, Hanna, Kevin and Patti for the package that came today.....Wyatt was ecstatic:)
Kris
Wednesday, February 2, 2005 10:51 AM CST
*****UPDATED FEBRUARY 7TH *****
PLEASE KEEP STAR NUCKOLLS IN YOUR THOUGHTS, SHE EARNED HER WINGS THIS MORNING AT 6:30 AM IN HER MOM AND DADS ARMS. STAR ALSO HAD WILMS TUMOR. MUCH LOVE AND PEACE TO HER FAMILY. ALSO HALEY IS AT ST. JUDES AND WILL BE HAVING SCANS THIS MORNING, FEBRUARY 7TH, TO LOOK FOR ACTIVE CANCER CELLS. HALEY AND HER FAMILY NEED A MIRACLE.
Just a warning.....this is going to be long!
Wyatt's AFP tumor marker test came back within a couple of tenths of his previous test. Not bad news, not good news. His AFP level should be below 2 for a Beckwith-Wiedemann Child and non-existant for anyone else.
So in short this means that his level is elevated yet, and that we will continue to retest until the levels come down, or something is found on scans.
He was suppose to have a CBC ran last Wed. as well, but our nurse forgot to send it to the lab saying she got sidetracked and forgot. Just another one of those lovely "clinic moments" that make me crazy. Of course there is way more to the story, but it didn't surprise me. Made me extremely angry yes, but I have been checking into other avenues this week to help us correct this problem.
February 4th marks the one year anniversary of the scans that first identified Wyatt's Tumors.
Looking back now on the last year is sad, difficult, and yet I find myself knowing that our lives have been changed and in many ways for the better.
That day a year ago began as an inconvience for me. Jimmie worked the night before and so it was just me and Wyatt on the way to a regular 3 month ultrasound screening and genetic appointment at St. Paul Childrens. I was tired of putting Wyatt through all these tests, and was going to talk with Dr. Mendelsohn, our genetist about that very subject when we saw her that day. I also was planning on being home before noon.
We checked in and went into the ultrasound and after having one done every 3 months for 2 years, it only took minutes for me to know that there was a problem on his right kidney. The radiologist came in, told me they had found a spot on his right kidney, and we were sent to Dr. Mendelsohn's office while they set up a CT scan for the afternoon.
The CT scan was a nightmare from start to finish. They couldn't get a line started for the contrast, poke after poke and person after person and no luck. They told me that the didn't allow parents in the room for the CT scan, and asked me to leave. I know I was laughing at them hysterically, saying I had been in the room with him when he was a couple of days old in the NICU when he had his first one done, and that I WAS NOT LEAVING. Not another word was said about it.
He was given medication rectally to sedate him so they could try to get a line started. I was holding him and watching him as his head and body began to go limp, and as his eyes got glassy. And I will never forget him reaching up to wipe the tears that ran down my face as I talked to him and held him.
That medication was already wearing off when an NICU nurse that I requested to be called finally got a line started in his foot. Blood tests that needed to be done, were not completed because they blew the line and I refused to let them try again. Dr. Mendelsohn's nurse confirmed what I think I already knew, they thought it was Wilms Tumor.
WILMS TUMOR. Your child may have cancer. Do you know how many times we were told during his first two years that this was a possibitity? Countless. Did I think it would happen to my child? No. Was I aware of others around me that were dealing with it? Not especially. Did I want to jump on an airplane and take him away from everything? OH, YES!
This year has brought many changes to our family, but more importantly to me.
I have watched a chubby, happy child endure more in this last year than any child should have to, but yet he is usually smiling.
I have watched my other children help out at home, and have their plans change at the last moment because their little brother has needed to come first. They have made me very proud, and take very good care of Wyatt.
I have seen Jimmie and I learn to do things that I never thought either of us would be able to do to help Wyatt. Learning about IV pumps, accessing his port, drawing blood from the port, giving IV medications...who would of thought we would do it, and be comfortable? We have made it through the year.
I have been humbled and in awe of family, friends, and a community who have supported us and helped us this past year. And then deeply touched by the generousity of strangers.
I clung to the support from our Beckwith-Wiedemann group, who sent messages from across the world as our world was shaking around us.
And I have found a new family and friends in the faces of other Wilms Tumor kids and children with cancer and disabilities who have shared our journey from this wonderful Caringbridge community.
And from this I have worked to provide a place for us to get together and share, support, and advocate for our children. WYATT'S FRIENDS is my way of honoring Wyatt, and those children that have earned their wings. PLEASE EDUCATE YOURSELF AND LEARN IN THE COMING WEEKS HOW YOU CAN HELP!
NOW FOR SOME FUN! I HOPE YOU HAVE NOT NODDED OFF YET!
As you know we are in full swing in sports right now.
ALI, JUSTIN, AND BRYCE
We have 18 games between today and Sunday evening. Justin will be playing 2 games in the Target Center on Saturday afternoon. He also was The Athlete of the Week. They won their game on Friday in LeCenter, and Tuesday at home against LeSueur for Junior Varsity. He also plays Varsity, but they did not win either of their games. We are proud of his hard work, respect fof other players, and positive attitude. .
JUSTIN IS #12 COACH ISAACSON EXPLAINS A PLAY LATE IN THE 4TH QUARTER DURING A TIME OUT
Bryce played Saturday in St. Peter in a tournament. They won 3 Games and the tournament in their division. Congratulations to all of the team! 
BRYCE IS #5
Ali played Junior Olympic Volleyball Saturday with the 7th grade team because they had only 3 players due to a scheduling conflict. They won 6 of 9 games and did very well.
Love and hugs to all of you. I will leave you with this final picture. This is what you may find Wyatt doing while at a game. Hope I have left you laughing!
Kris
Wednesday, February 2, 2005 10:51 AM CST
*****UPDATED FEBRUARY 7TH *****
PLEASE KEEP STAR NUCKOLLS IN YOUR THOUGHTS, SHE EARNED HER WINGS THIS MORNING AT 6:30 AM IN HER MOM AND DADS ARMS. STAR ALSO HAD WILMS TUMOR. MUCH LOVE AND PEACE TO HER FAMILY. ALSO HALEY IS AT ST. JUDES AND WILL BE HAVING SCANS THIS MORNING, FEBRUARY 7TH, TO LOOK FOR ACTIVE CANCER CELLS. HALEY AND HER FAMILY NEED A MIRACLE.
Just a warning.....this is going to be long!
Wyatt's AFP tumor marker test came back within a couple of tenths of his previous test. Not bad news, not good news. His AFP level should be below 2 for a Beckwith-Wiedemann Child and non-existant for anyone else.
So in short this means that his level is elevated yet, and that we will continue to retest until the levels come down, or something is found on scans.
He was suppose to have a CBC ran last Wed. as well, but our nurse forgot to send it to the lab saying she got sidetracked and forgot. Just another one of those lovely "clinic moments" that make me crazy. Of course there is way more to the story, but it didn't surprise me. Made me extremely angry yes, but I have been checking into other avenues this week to help us correct this problem.
February 4th marks the one year anniversary of the scans that first identified Wyatt's Tumors.
Looking back now on the last year is sad, difficult, and yet I find myself knowing that our lives have been changed and in many ways for the better.
That day a year ago began as an inconvience for me. Jimmie worked the night before and so it was just me and Wyatt on the way to a regular 3 month ultrasound screening and genetic appointment at St. Paul Childrens. I was tired of putting Wyatt through all these tests, and was going to talk with Dr. Mendelsohn, our genetist about that very subject when we saw her that day. I also was planning on being home before noon.
We checked in and went into the ultrasound and after having one done every 3 months for 2 years, it only took minutes for me to know that there was a problem on his right kidney. The radiologist came in, told me they had found a spot on his right kidney, and we were sent to Dr. Mendelsohn's office while they set up a CT scan for the afternoon.
The CT scan was a nightmare from start to finish. They couldn't get a line started for the contrast, poke after poke and person after person and no luck. They told me that the didn't allow parents in the room for the CT scan, and asked me to leave. I know I was laughing at them hysterically, saying I had been in the room with him when he was a couple of days old in the NICU when he had his first one done, and that I WAS NOT LEAVING. Not another word was said about it.
He was given medication rectally to sedate him so they could try to get a line started. I was holding him and watching him as his head and body began to go limp, and as his eyes got glassy. And I will never forget him reaching up to wipe the tears that ran down my face as I talked to him and held him.
That medication was already wearing off when an NICU nurse that I requested to be called finally got a line started in his foot. Blood tests that needed to be done, were not completed because they blew the line and I refused to let them try again. Dr. Mendelsohn's nurse confirmed what I think I already knew, they thought it was Wilms Tumor.
WILMS TUMOR. Your child may have cancer. Do you know how many times we were told during his first two years that this was a possibitity? Countless. Did I think it would happen to my child? No. Was I aware of others around me that were dealing with it? Not especially. Did I want to jump on an airplane and take him away from everything? OH, YES!
This year has brought many changes to our family, but more importantly to me.
I have watched a chubby, happy child endure more in this last year than any child should have to, but yet he is usually smiling.
I have watched my other children help out at home, and have their plans change at the last moment because their little brother has needed to come first. They have made me very proud, and take very good care of Wyatt.
I have seen Jimmie and I learn to do things that I never thought either of us would be able to do to help Wyatt. Learning about IV pumps, accessing his port, drawing blood from the port, giving IV medications...who would of thought we would do it, and be comfortable? We have made it through the year.
I have been humbled and in awe of family, friends, and a community who have supported us and helped us this past year. And then deeply touched by the generousity of strangers.
I clung to the support from our Beckwith-Wiedemann group, who sent messages from across the world as our world was shaking around us.
And I have found a new family and friends in the faces of other Wilms Tumor kids and children with cancer and disabilities who have shared our journey from this wonderful Caringbridge community.
And from this I have worked to provide a place for us to get together and share, support, and advocate for our children. WYATT'S FRIENDS is my way of honoring Wyatt, and those children that have earned their wings. PLEASE EDUCATE YOURSELF AND LEARN IN THE COMING WEEKS HOW YOU CAN HELP!
NOW FOR SOME FUN! I HOPE YOU HAVE NOT NODDED OFF YET!
As you know we are in full swing in sports right now.
ALI, JUSTIN, AND BRYCE
We have 18 games between today and Sunday evening. Justin will be playing 2 games in the Target Center on Saturday afternoon. He also was The Athlete of the Week. They won their game on Friday in LeCenter, and Tuesday at home against LeSueur for Junior Varsity. He also plays Varsity, but they did not win either of their games. We are proud of his hard work, respect fof other players, and positive attitude. .
JUSTIN IS #12 COACH ISAACSON EXPLAINS A PLAY LATE IN THE 4TH QUARTER DURING A TIME OUT
Bryce played Saturday in St. Peter in a tournament. They won 3 Games and the tournament in their division. Congratulations to all of the team!
BRYCE IS #5
Ali played Junior Olympic Volleyball Saturday with the 7th grade team because they had only 3 players due to a scheduling conflict. They won 6 of 9 games and did very well.
Love and hugs to all of you. I will leave you with this final picture. This is what you may find Wyatt doing while at a game. Hope I have left you laughing!
Kris
Wednesday, January 26, 2005 8:57 AM CST
GOOD MORNING!!!
High hopes for todays bloodwork at Childrens! And also for HALEY MATHIS, who is also having blood work done in Nebraska to see if her platelets have reached 100, so that she can go to St. Judes Hospital in Memphis for treatment of her Wilms Tumor.
I have lots of positive energy this morning, and am excited for Haley, who really deserves the chance to go to St. Judes and get treatment in their clinical trials for Wilms that have shown success. All our love goes with them today.
Wyatt will have blood work done this morning, and because this is the test that is sent to Mayo Clinic in Rochester, we will not have the AFP tumor marker test back today. But the other testing should be back this afternoon.
Will update when I know more...
Kris
Tuesday, January 18, 2005 10:41 PM CST
Okay the long awaited update.....Drumroll please....
Well as most of you have noticed there was problems with the website, so in the next few days watch for changes and new updates. for those of you who thought I fell off the face of the earth, I assure you we are still here, just busy, busy, busy!
We have had a household theme here, see how little time it takes to reach the household out of pocket for our insurance!!
Today 3 of 5 kids were sick. Ali, Carter and Wyatt. I knew that it was only a matter of time before Wyatt caught what was going around the household and school. We are hoping that it is short lived and he gets better quickly.
Ali had the croup, and it was bad enough that I had to take her into the ER for an Epi nebulizer treatment and a steroid shot to open her airway.
Jimmie fell in the garage about a week and a half ago when the ladder he was on fell. We ended up taking him into the ER. It is bad when you get him to go to any Dr. for himself.
It is still bothering him, and he really should have it looked at to make sure there is no break, but.....he hates Drs. so much, I don't think he will go. He told them at the ER that I had set a trap for him. HAHA!
Master Wyatt is still on his sleeping kick. We have no reason for it. He will be having blood work done on the 26th. His AFP Tumor marker test is due, and we need to see a decrease in the numbers. We will also get to see where his counts are.
Basketball is in full swing and this week will be the first Saturday of Junior Olympics, and believe it or not, Easter weekend will be our first free weekend. Wyatt is loving going to the games and getting to socialize with everyone.
He is fun to watch interact with all the kids, and share his treats with the older kids.
It is hard to believe we are midway through January and we have no snow! But I must say that the cold weather we just had was enough to remind us that, yes, it really is winter here in Minnesota.
We hope that everyone is experiencing a good start to the New Year. We are busy, and hoping for better health and luck in 2005.
Kris
Tuesday, January 18, 2005 2:52 PM CST
Okay, look for an update this evening:)
Being a basketball parent this afternoon:)
Kris
Tuesday, January 4, 2005 10:39 PM CST
Alright so I thought I was going to be better about updating the journal. I am sorry, I had good intentions.
For those of you who know us, you all know that New Years Eve was the 4th anniversary of the death of our twin girls Emilie and Randi. I did a little better this year, at least until I found out that Griffin, who was featured together with Wyatt on Tumbleweed, was ready to earn his wings.
He passed away this morning at 4:32 am. He is a brave and courageous boy, who loved Yugi-oh, and whos stay here on earth was too short.
I have been horrible about signing guestbooks in an attempt to get the MSN group going and to catch up at home, so please forgive me if I haven't signed in, but I am making the rounds and checking on you.
We are wishing you all a VERY HAPPY NNEW YEAR!
The MSN group is set up now. You can apply for membership at The intent of the group will be to support families with cancer, and also to provide a common place for Wilms Tumor families to be able to find information and resources, post questions, and chat with other families who are also dealing with cancer.
It is a work in progress, and any input from other families is very welcome. I hope you will become a part of our family, no matter what type of cancer your family is dealing with, or even if you are just wanting to help become more aware of childhood cancer.
Every person has something that they can do to help in the fight against cancer, please become a part of our fight to find a cure.
Love,
Kris
Tuesday, December 28, 2004 10:17 AM CST
Good Morning!
I am sorry that I have not been better about updating. So much has been going on, and sometimes it is hard for me to sit and find the right words to say.
Each new day brings new challenges, sometimes I feel like I am just spinning my wheels, and other days I know that I am accomplishing something.
It has been a year of learning for me. I am learning to put my energy where it is going to do the most good and am distancing myself from the areas of stress. I must say that I am a slow learner, if it has taken me 35 years to figure it out!!! HAHA.
Wyatt is doing okay, still sleeping up a storm. We will need to repeat blood work more frequently until his AFP tumor marker test once again decreases. His ANC and hemoglobin also were lower this last time, so we will be watching those tests as well.
He enjoyed Christmas, he had fun opening packages, including some that did not belong to him. It was fun to watch the reactions that he had when opening his presents.
He has learned that if he doesn't get his way, screaming and hollering may help. Tyrant in training.
The MSN group is set up now. You can apply for membership at WYATT'S FRIENDS The intent of the group will be to support families with cancer, and also to provide a common place for Wilms Tumor families to be able to find information and resources, post questions, and chat with other families who are also dealing with cancer.
It is a work in progress, and any input from other families is very welcome. I hope you will become a part of our family, no matter what type of cancer your family is dealing with, or even if you are just wanting to help become more aware of childhood cancer.
Every person has something that they can do to help in the fight against cancer, please become a part of our fight to find a cure.
Love,
Kris
Saturday, December 25, 2004 7:20 PM CST
MERRY CHRISTMAS TO EVERYONE!
I hope that you all had a wonderful day.
I am sorry that I have not been better about updating. Many of you know that this is not my favorite time of the year. Too many memories, and this year has been difficult for me.
Wyatt's test results showed that his ANC is low, his hemoglobin has dropped and he contines to sleep for 12 plus hours a day. His AFP tumor marker test has also almost doubled in just 4 weeks, so we will be repeating the test and waiting for it to come back down.
His ultrasound was GREAT!!!! What a relief for his worry wart Mom.
I just wanted to get this post up for everyone and will try to update farther later. Sorry to worry you guys.
Love,
Kris
Wednesday, December 15, 2004 11:10 PM CST
********UPDATE*******
Well his ultrasound and chest xray looked good, they have to compare them to the old, but it was our normal radiologist, and I am sure he would have told me if there was something he was looking at.
His blood work is not all back yet, we are still no where near normal levels in many areas, which is not unusual for a post chemo child, but he is contining to decline in 4 areas.
That is of concern, and the big one we are waiting for is the AFP tumor marker test. This is the test that they send out to Mayo Clinic in Rochester, and it did get out in the courier this morning, if they remembered it needed to go. That is a whole different sad story.
The assumption is that the pain he is having in his tummy is from scar tissue from his surgery.
Hopefully they will call with the labs tomorrow or fax them. I will be off and running all day, and am enlisting Grandma Rechs help because I can't be in 2 places at once, as hard as I have tried! LOL
Thank you for thinking about us, for your messages and all the love, it brings tears to my eyes that I have each and everyone of you, and I hope that you all know that you are very much appreciated.
AND THE BEST PART? I FEEL LIKE A LOAD OF BRICKS HAVE BEEN LIFTED FROM MY SHOULDERS. I WILL TAKE BEING A WORRY WART MOTHER ANYDAY.
AND NOW FOR SOME WONDERFUL NEWS FROM GERMANY, AND LUCAS, CORINNE, RALPH, AND ELEA KRUGEUR
Hello,
Just wanted to give you a few news on where we are on Lucas' therapy:
- He had surgery on Wednesday December 1 for a Hickmann Katheter
Implantation and a Port Explantation
- On December 2 he moved to the brand new transplantation center in
Frankfurt Uniklinik. He was the second patient to move in. On Monday 2
additional kids came. Now 4 of 6 rooms are occupied.
- Starting December 3 (Friday) until December 9 (Thursday) he was
administrated the high dosis chemotherapy (Melphalan, Etoposit,
Carboplatin), which as side effect destroyed his bone marrow.
- He did well during chemo and only had to vomit twice because he could not
swallow the caplets.
- Friday last week was a break day.
- Saturday was BIG DAY - He was transplanted. He received back his own stem
cells that we had collected 3 months ago so that they reconstitute this bone
marrow. The whole procedure was a bit scary in the end because his heart
rate dropped real deep twice (once to 30 and once down to 17). Also he had a
very disgusting taste in his mouth due to the liquid they use to freeze the
stem cells. This made him vomit (... all the thinks it took me so long to
make him eat this morning). He felt really sick for about 20 minutes but
then during the afternoon, the thought of his trains gave him drive and he
was much better. We are so glad this part is over.
- So far we are REALLY happy and thank God that he still feels ok. Besides
horrible diarrhea (green liquid) he does not have any (yet) fever nor any
open wounds in the mouth (classical side effect)
- The next 7 days will still be most difficult because he is bottom line for
leukocites and in complete aplasia (0 ANC, 10 leukocites). Only 10 days
after transplantation the blood productions starts again. He received blood
and paletets already on Sunday. We pray to God that he continues to stay
free of infections. During the past 3,5 months he always got fever during
the time his immune system was low, and now is lower than ever for a really
long period of time.
- But overall SO FAR he is a real champion. He still eats a bit - at least
enough they do not need to feed him through the line and he is so reasonable
with his 5 years, staying in his room with all the desinfection precautions
and rules...
Lucas and Corinne starting the stem cell transplantation, and Lucas with one of his favorite things....TRAINS!
Tuesday, December 14, 2004 9:41 PM CST PLEASE SEND WYATT ALL OF YOUR POSITIVE WISHES, WE WILL BE HAVING SCANS ON WED. DECEMBER 15TH, 2004 AT 7:15 AM AT CHILDRENS HOSPITAL AND CLINICS, ST. PAUL.
We are having scans and blood work done two weeks early. Wyatt has been the king of sleep, no he hasn't been going to sleep any earlier, but he has been sleeping 11-14 hours a day, and has complained that his "budda" (tummy) hurts one too many times for me to be comfortable.
Somedays he is our child, and then others he just does not seem to be feeling well at all.
Our HEM/ONC nurse, not happy about it, told me she felt it was a pediatrician issue. So I called our family Dr. who said that if the scans could not be moved up she would see him and order the neccessary testing. Needless to say the test got moved up and we have to be there at 7:15.
Hopefully it will just prove that Mom is a worry wart, and I will have a less stressful Christmas.
Well it has and will be a busy week here.
3 Christmas concerts this week, basketball games Thursday night, Basketball tournament Saturday, and a bunch of other items added in there. Whooo....I got tired just typing them all:) LOL
Please keep Wyatt, and all our other Caringbridge families in your thoughts.
Kris
Wednesday, December 8, 2004 10:06 PM CST
I am so sorry that it has been a while since I have sat and updated. It was one of those times that I knew that I needed to do it, but just couldn't make myself sit at the computer and get it done. And it seemed like the longer I waited the harder it became.
It has been a long week. My heart is breaking for the Brestels, having lost sweet little 4 year old Josh to our enemy, Wilms Tumor. And Haley who also is fighting that same enemy, learned that she had new growth, and that the treatment she was using was not working.
Little Harlei Parker also did not get good news and I know that it is difficult for her family as well, and worry when I have not heard from them in Wyatt's journal or her mom had not updated.
I keep asking for a miracle, amd would love to have one for Haley, because right now she is in desperate need of one, but then I feel selfish asking for one just for her, when in truth I wish for one to spare every family dealing with cancer that pain.
Ali, Wyatt, Diane Smisek, one of my best friends and I left early Friday morning for Lincoln, NE for Josh's funeral to help his family honor that brave, sweet child who fought so hard, but lost his life to Wilms. I was scared about how I was going to handle it, but actually felt a sense of peace being there. We were able to meet Steve, Diane, and many members of their family, many who knew both Wyatt and Haley from their caringbridge sites. What an honor. To know that these people are following my child, and knew just who he is.
We met Darby Brion, 6 year old Brookes mom, who lives in Omaha. It was so nice getting to visit with her as well. I wish we had the chance to meet Brooke. Someday that wish will be a reality.
We also got to meet another young lady, who has fought an incredible fight and is ready to enter another battle against Wilms. Haley Mathis, her sister Hanna, and her Mom and Dad, Kevin and Patti.
But maybe the best part of the trip was finally getting to give all of them the hugs we have been sending to them via our caringbridge pages for many months.
I have been working hard to get Patti and Kevin information to begin this next difficult part of treatment for Haley. And I know that I am helping to make a difference, but I also wonder when we will get to the day where this fight will not be necessary. I hope that it is soon.
Wyatt has been doing well. He has been sleeping much more lately, but as any mother of a 3 year old would probaly agree, it is less time for him to get into mischief. HAHA:)
No snow here Uncle Joe! Sure you don't want to move back?
I know a couple of girls would be tickled pink.
Thanks for hanging in there with us, I cannot tell you how much each and every entry in this book means to me, and someday Wyatt will be able to sit down and see how loved he truly is by all of you.
To all of our caringbridge families, and especially the Parkers, The Mathis', and the Brestels, we are thinking about you and want you to know that you are in our thoughts.
With much love,
Kris
Monday, November 29, 2004 12:46 AM CST
UPDATED JOURNAL THURSDAY, DECEMBER 2, 2004
Hi everyone.
Yesterday was not meant to be a day for good things to happen. 2 of our Wilms families are dealing with heartbreak.
4 year old Josh Brestel is now flying cancer free having earned his wings yesterday.
Haley Mathis also learned that her cancer has new growth and new tumors. The treatment is not working.
Wyatt, Ali, my best friend Diane Smisek, and I are going to be leaving at 3 am for Lincoln, Ne to attend Josh's service in the morning and to spend some time with Haley and her family. They live close to the Lincoln area.
We are so sad that this is the reason we are going, but excited to give them hugs in person instead of via email. We are traveling this journey together and are ready to help them honor our brave Josh, and help support Haley, Hanna, Patti and Kevin as the fight takes a new road.
PLEASE KEEP THEM IN YOUR THOUGHTS AND PRAYERS!
*********************************************
I hope you like the new picture of Wyatt. It is one of my favorites. It was taken at Grandma and Grandpa Rechs while he was playing with Ali and Justin. Justin had just flung him into the pile.
Wyatt has had a fever since about 9 pm last night and we have been trying to rule out what the cause is. Jimmie has not been feeling well either. He has a sinus cold so we are hoping that is what Wyatt has as well. Watch and wait. If we are still dealing with it tomorrow morning we will be taking more aggressive action. Mainly because he still does have his port and his immune system is still suppressed.
He has been whiny and quiet. His grouchiness is much better.
He is watching Shrek for the 100th time, and has been cuddly.
We got snow here on Friday/Saturday and he had a good time outside building a snowman with Ali, Carter and our neighbor Katie.
Our test results came back from St. Louis for Jim and I and they do confirm that Wyatt does have the UPD form of Beckwith-Wiedemann Syndrome(BWS). What this means in terms you can all understand is that Wyatt will have no greater chance of passing the BWS onto his children, and that outside factors, such as progeterone which may be a link to BWS, and my gestational diabetes, that was not treated, were not the cause of him having BWS.
Well today markes the official start of the 2004-2005 basketball season for our family. Bryce has his first high school game tonight. He went to school in shirt and tie. I will have to get a picture of that to share:) Justin has his first game tomorrow, and they both play Thursday night. So we are off and running.
We went to open gym last night and all 5 kids were out on the floor playing hoops. As you can imagine he is too cute.
Carter had fun dribbling around the outside lines in the gym.
Bryce played with the varsity coach, the senior high players, including his brothers and his friends, and some adults in a scrimmage and was making 3 point shots. His head was a little bigger before we left. LOL He did a good job.
Please keep all the families of children with cancer in your thoughts and especially those families who will be experiencing a Christmas without their child. Of course this has a special place in my heart as our family has been through this. Emilie and Randi would be 4 on New Years Eve. There are many Angels who have joined them this year. We must hope for a CURE!
Love.
Kris
Tuesday, November 23, 2004 7:21 PM CST
*******SOMEONE SOON WILL BE NUMBER 20,000!! PLEASE LET US KNOW WHO YOU ARE******
I WILL UPDATE TOMORROW, BUT WANTED TO POST THIS.
Hi everyone. Good News! Although Wyatt's AFP is still elevated, it is lower, hurray. So we just keep watching it and will repeat it in 6 weeks. His other counts were low in many areas, but that is not out of the ordinary for a child post chemo. His white count is low, so his grouchiness may have been viral.
Well it seems that my dreary mood of last week is felt by more than just me. THANK YOU SO MUCH TO OUR CARINGBRIDGE FAMILIES FOR REMINDING ME THAT WE ARE NOT ON THIS ISLAND ALONE. WE ARE SO GRATEFUL TO HAVE ALL OF YOU!!
I am making my rounds to all of you to check in and say Happy Thanksgiving! And to thank you for becoming a part of our familiy that this Thanksgiving I am SO VERY THANKFUL FOR!
I am working on a way to channel that frustration and to help make more people aware. It will require the help of others, so I will be asking for your help. It is a simple and easy idea that will have huge impact. So watch for details soon.
We have started basketball in our household. Oh and JO volleyball for Ali too. Sometimes I think the shoe shopping is the worst part of it! :) LOL! Soon games will begin and we will become a family on the go. Wyatt will be ecstatic! He enjoys going to the games and seeing everyone, especially the girls, who are all in love with him.
Both Justin and Bryce will play games on the same night, one at home and one on the road. We will be able to make both games on most nights. Add Ali having practice in there and (ya I have a headache already) we are gonna be hoppin'
But you know Justin, Bryce and Ali all love to play sports and we really do love watching them play and are hoping for a great season, and them enjoying themselves.
They really are alot of help to us and deserve to have some fun.
So we are hoping to stay out of Club Med and under the radar for 6 weeks, which is the 27th of December for scans, chest x-rays and blood work. Oh would that be nice.......
Happy Thanksgiving to each and everyone of you! Count your blessings and try and hug your kids, which in our house is about impossible! Bribery does not work anymore.
Love,
Kris and Bucket
Thursday, November 18, 2004 9:03 AM CST
As I start typing this, I am mentally scolding myself for doing it when I am in this kind of mood. Wyatt's grouchiness is rubbing off on me, and his fitful sleeping patterns are doing me in.
Wyatt's visit went surprisingly well yesterday, just a blood draw for counts and repeating his AFP Tumor marker test, which came back elevated the last time it was drawn.
I am sure that part of the reason we were in and out is because the Hem/Onc clinic has meetings Wed. afternoons, and we were the last patient, but HEY, WE WILL NOT COMPLAIN WHEN WE ARE IN AND OUT IN UNDER 45 MINUTES! Noah we are sorry to hear we missed you guys at clinic.
Wyatt has become alittle more uncomfortable with being accessed. He is still much better than most of the 3 year old population would be, but we know and recognize his reluctance.
Our nurse came in with a student nurse and asked if she could access Wyatt, and I so wanted to say NO WAY! I did not though, but will politely decline next time. It just drug it out for Wyatt, and after watching her put on and take off 4 sets of gloves and touch things in between....they can practice on someone else.
His counts were faxed to me yesterday afternoon, and I could not read the numbers, so I called and asked for them to be faxed again, and still could not read them. I just got off the phone with Dr. Mendelsohn's office and her secetary is sending them out for me. Can I tell you again how much we love her? I do know that his ANC is good, as that was one that I could read, but that there were many counts with low numbers on the printout and 2 high readings.
But being a mother, I need to see them to know where we are at.
His AFP Tumor marker test, which gets sent out to Mayo in Rochester, should be back on Friday. Dr. Mendelsohn's office will call for the results for us if we do not have them Friday morning so we are not waiting through the weekend for the results. Keep those fingers crossed that it has dropped, and we see no new increase :)
Wyatt continues with the low grade temps, and seems to be sleeping a bit more, and has been very whiny. Much like chemo days gone by. I am hoping it is viral and finds the door soon because I really was getting used to having the happy, silly Bucket back.
I just wanted to share with everyone something that frustrated me to no end yesterday and has added to my grouchiness. I was running errands before I picked the kids up and someone approached me and asked how I was and that they had heard from my family that Wyatt was done with his treatment and that it was so great to know he was cured and life was back to normal for us. Weren't we excited? ......................(those dots represent the indrawn breaths of caringbridge families from across the US) My mind was screaming what planet are you and my family on? But I politely agreed that yes we were happy and left it at that. At first I was angry, but now it is rather sad.
Yes, Wyatt has finished chemo, YES, WE ARE VERY HAPPY! BUT CURED? NO! 5 years, with a more than a 50 PERCENT chance of reoccurence in the first 2 years.
It was a reality check about how little people know and understand about cancer. We live it and still do not understand everything there is to know. Our lives are touched by a great many of families, many who just signed Wyatt's guestbook to wish him a Happy Birthday, who live in our new reality.
CANCER SUCKS! For anyone dealing with it. There is a need for greater education of childhood cancer. Some feel that ignoring it will mean that it does not need to be dealt with, others fear it, not wanting it to happen to someone they know because then it hits too close to home, and the reality is that it could happen to their child.
Our new reality is that those families in our caringbridge guestbook are just that, OUR FAMILY. It has hit close to home, over and over, and over again.
Do Something for Wyatt, educate yourself alittle more today about cancer. Visit a link to another caringbridge page out of his guestbook or check in on HALEY and wish her luck as she begins traveling another road on her detour. No profound words are needed to sign a guestbook. A simple we are thinking of you, and are Wyatt's Friend will be enough to let them know that you came by.
Thank you in advance for your help.
Kris
Tuesday, November 16, 2004 11:22 PM CST
THANK YOU TO EVERYONE FOR SIGNING IN WYATT'S GUESTBOOK FOR HIS BIRTHDAY, AND FOR ALL THE CARDS HE HAS GOT IN THE MAIL. A BIG THANK YOU TO THE FRIENDS OF ALLIE SCOTT FOR THE WONDERFUL AMOUNT OF CARDS FROM THEIR GROUP! WE ARE SO GRATEFUL TO EACH AND EVERYONE OF YOU.
We are planning on getting a map out to see where Wyatt has got mail from. All of the kids are checking the postmarks and addresses from the cards as they arrive.
Wyatt had a wonderful time at his party, and got many fun gifts to keep him occupied for a while.....or so I thought. Today he came downstairs sporting new nail polish on his fat little fingers that he applied in his big sisters room. Can I tell you that I was dreading seeing the damage? But in reality Jimmie found the bottle sitting in the middle of her room with the cover on, and not a drop anywhere else. THANK GOODNESS!
He has been grouchy one minute, happy the next. To the point that I am dreading his appointment tomorrow for bloodwork at Childrens. It is a nasty reminder of chemo days gone by where counts were in the cellar.
I thought because he had drainage from his left ear that he had an ear infection, but after taking him to the family pediatrician on Friday, his ears were fine, but he was running a temp.
Because of his port, having a temp can mean blood cultures and hospital stays. It came down with tylenol and motrin, but has lingered.
I asked that we have counts done as well as his repeat AFP Tumor marker test done. Hopefully that test will not show another increase. Please cross your fingers. We will hopefully have the results back Friday. The test is actually shipped to the Mayo Clinic in Rochester from Children's in St. Paul. Go figure.
Well the grouchy Wyatt has returned so I am off to try to get him settled for the night.
Love,
Kris
Friday, November 12, 2004 9:27 AM CST
Hello.
Well our baby will be turning 3. Where has the time gone?
I have had a roller coaster of emotions the last week or so. His birthday is another milestone in his life, and one that now has even greater meaning.
3 years ago I must admit that I was pretty miserable. Having chest pains for no reason any Dr. could figure out, which we would later learn was due to an undiagnosed hernia, and being scared to death about his birth after losing the girls. We had already had one trip by ambulance to Rochester that had left me with an even worse view of Drs. and our journey was not over.
I was scared, angry that people did not understand the fear I was having and anxious.
November 14, 2001 arrived and after having more than my usual amount of contractions and fearing an urinary tract infection we were off to Dr. Howell's office and than admitted that afternoon. After recognizing that the contractions were not stopping with the medications and some fetal distress we were planning a repeat c-section for 9 p.m.
At 9:09 p.m. Wyatt made his entrance into this world weighing 9lbs 1oz at 35 weeks. It is hard for me to remember much after that. I do remember seeing him before they went to the nursery, he looked so much like his siblings.
I was given a medication for nausea that combined with everything else left me feeling like a space cadette, and wanting to sleep. I really had to work to concentrate on what was happening and to stay awake. Wyatt was life linked early that morning to Childrens in St. Paul because of respitory distress, pneumonia, and an abdominal mass on his
left side.
A new journey had begun in the very difficult surrounding of another NICU less than a year after losing Emilie and Randi. We had many wonderful people including family and medical staff to help us.
12 days later Wyatt was home and doing well. Such a happy smiling child that everyone feel in love with. Now nearly 3 years later he is still that lovable child. He melts your heart, and brings a smile to your face. We were so blessed to be given such a wonderful gift.
Our journey has had detours, but we are hoping that the road we are traveling now leads us to a cancer free party 5 years from now and includes the many other children who have also had their own detour.
Wyatt will be celebrating his birthday with family on Sunday. When asking him what he wants for his birthday he keeps telling us pancakes, so we are having brunch and SpongeBob cake.
Please sign his journal and wish him a Happy Birthday so that in 5 years when he is having that cancer free party he will know you were here for the detour.
Love,
Kris
Wednesday, November 3, 2004 9:47 PM CST
Hi everyone.
PLEASE KEEP THE FAMILIES OF CONNOR, CHEYENNE AND REBECKA IN YOUR THOUGHTS. THEY ALL HAVE EARNED THEIR ANGEL WINGS THE PAST TWO WEEKS. IT HAS BEEN A SAD TIME FOR CARINGBRIDGE AND TUMBLEWEED FAMILIES.
Wow, it has been a while since I have updated.
We had a busy week before Halloween.
Friday Ali, Carter and Wyatt and I went to the Halloween Carnival before Bryce had his Birthday party for friends later that evening. Ali had her birthday party for friends on Saturday evening. Her party was put off because of Wyatt, so we really needed to have it for her.
Justin was confirmed on Sunday, (Halloween) as well. We had dinner at our house afterwards for family and Godparents.
Bryce and Justin are looking forward to going deer hunting with Jimmie this weekend and Ali has JO tryouts for volleyball on Saturday.
Wyatt had fun going trick or treating here in the neighborhood and then off to family and friends in Montgomery and Faribault. The Grandmas and Grandpas were here for confirmation, so that made a few less stops this year.
He had a good time, and sure LOVED all the chocolate that he got. He could find a M&M in a haystack. LOL
This week has been much quieter, and a relief.
Hope everyone is welcoming November with a smile and happy that no more people will be calling for the election asking for your vote or to take a survey, and all those campaign ads are a thing of the past:)
Kris
Monday, October 25, 2004 8:26 AM CDT
Good morning.
It has been a quiet weekend here by Rech standards.
Bryce had a lock in Friday, Justin had practice Friday and Saturday morning for football, and Ali had a volleyball tournament Saturday. Other than that we did not do much. It was very nice to lay on the couch and order a movie Saturday night. I know that we have missed so many of the new releases, that we could probaly sit in front of the TV for weeks and still not see them all. LOL
Wyatt has been doing well, he did great at the dentist except when they brushed his teeth with "the hot stuff" otherwise known as flouride. He also wanted to eat or get a drink right away, that half hour he must of asked 50 times alone.
The genetics clinic is working hard to arrange his AFP draws without going through the HEM/ONC clinic. We will be repeating that to check that elevated level. Jimmie and I will flush his port this weekend ourselves to avoid having to make a trip to the clinic.
We will also be seeing the Physio therapist this week at Gillette in St. Paul. They are working him in, as he is booked out to March already.
We will have a break here soon from activities. Bryce and Ali are done with football and volleyball. Justin has a sectional game Tuesday evening. They now play till they lose. Basketball will not begin until the 15th of November for Justin and Bryce. And Ali will not start basketball and J.O. volleyball until December. She will have two Saturdays of tryouts in November for volleyball. Mom's taxi can not wait!
Hope everyone has a great Halloween!
Wyatt's link in the guestbook entries has been fixed for all our caringbridge families:)
Kris
Monday, October 18, 2004 2:01 PM CDT
Hi everyone.
Wyatt has been doing well, he had some low grade temps over the weekend, but nothing that some Tylenol did not help. It could have been flu shot related.
Jimmie, Justin and Bryce are in North Dakota duck hunting with Grandpa Rech so it has been rather quiet here. They will be returning tonight or tomorrow.
We went to Ali's volleyball tourney on Saturday morning and then to the Mall of America for kids weekend. We did not ride on rides in Camp Snoopy, but instead did all the activities and games set up for kids weekend. The kids had a good time and had fun picking out pumpkins at the KS95 pumpkin patch.
The biggest problem this weekend has been keeping Wyatt entertained and out of mischief which is becoming a full time job.
Because it is MEA week I tried not to schedule too much into this week. Wyatt has an appointment tomorrow at the pediatric dentist, to have his teeth cleaned and checked. Chemo is not the best thing for kids teeth. They also will be evaluating his jaw to watch for any problems.
Snoopy our bassett hound has been favoring his right hind leg so we will be taking him to the vet between picking up Ali and Carter from school and bringing Ali to volleyball practice.
Well we sure wish that we were on the beach with Zeah, Bleiz, Joe and Nikki. It is on the agenda for the future once we get things back to normal around here Joe:) Things are depleted around here in the physical, emotional and financial departments. Just need some time to recover.
Hope everyone has a good MEA week!
Special thoughts for Lucas in Germany, who was hospitalized with fever while undergoing his chemo, and Isabelle and Christy Weyer who are making the 15 hour trip back to St. Louis so 18 mo old Bella can have tongue reduction surgery done on Wed. We are thinking of you.
Kris
Monday, October 11, 2004 9:10 AM CDT
*****************UPDATE*****************
WED. OCTOBER 13, 2004 3:45 P.M.
WYATT'S SCANS WERE CLEAR, WE WILL BE RECHECKING HIS AFP IN 3 WEEKS. WE HAD OUR ULTRASOUND AND THEN WENT BACK FOR HIS CHEST X-RAY AND WHILE WE WERE WAITING FOR THEM TO CHECK THE FILMS THEY CAME AND TOLD OUR TECH THAT THE RADIOLOGIST WANTED TO TAKE A SECOND LOOK AT HIS LIVER, SO YOU CAN IMAGINE THAT MY HEART WAS RACING. BUT EVERYTHING LOOKED OKAY! (HUGE SIGH) WONDERFUL NEWS AND NOW MOM CAN RELAX. THE REST OF HIS APPOINTMENT WAS ALRIGHT, HE GOT A FLU SHOT WHICH HE DID NOT APPRECIATE, IT IS ONE OF THE RARE TIMES THAT HE HAS CRYED. JIMMIE AND I WILL BE FLUSHING HIS PORT ONCE A MONTH. DR. SLOMIANY WAS VERY SURPRISED WHEN WE SAID WE WANTED TO WAIT A YEAR BEFORE TAKING OUT THE PORT. BUT HE MUST HAVE BLOOD DRAWS EVERY 6 WEEKS, AND THE PORT MAKES EVERYONES LIFE EASIER. THE DR. IS FINE WITH THAT, JUST TOLD US IT WOULD NEED TO BE FLUSHED. THAT ALONE IS ENOUGH TO CELEBRATE!!!
DR. MENDELSOHN, OUR GENETIST, WAS PRESENTING THE BWS PROTOCOL TO ALL THE HEM/ONC DRS. THIS AFTERNOON. THIS NEW PROTOCOL AND POLICY SHOULD MAKE LIFE EASIER FOR US AS WELL AS MANY OTHER FAMILIES IN THE FUTURE. SHE WILL BE SHARING A COPY WITH US WHEN IT IS FINALIZED. THIS IS A DIRECT RESULT OF ALL THE PROBLEMS WE HAVE HAD AND CONTINUE TO EXPERIENCE DUE TO THE LIMITED KNOWLEDGE OF BECKWITH-WIEDEMANN (BWS) AND HOW IT RELATES TO WILM'S TUMOR AND HEPTOBLASTOMA AND THE OTHER CANCERS RELATED TO BWS.
THANKS FOR ALL YOUR WELL WISHES!
Alright I am learning the hard way about adding journal on here.
Once again my connection expired while I was dealing with the results from Wyatt's labs from last week. UUUGGGHHHH...... But, lesson learned.
Wyatt has been doing well. He is sporting new war wounds on his mellon after trying to ride his bike down our STEEP driveway and learning that it does not work.
His appointment went well on Tuesday when we saw Dr. Dahl at Gillette in St. Paul for his leg length difference. This is the first time that Dr. Dahl saw us since Wyatt was diagnosed with Wilm's Tumor.
He was especially interested because he sees many kids with hemihypertrophy (one side of the body is bigger than the other) and Beckwith-Wiedemann Syndrome (BWS) due to the large number of kids who have leg length differences with these two syndromes.
Wyatt is only the second child to have a positive screening for cancer that he has seen. Back to the "having a better chance to be hit by lightening theory" again.
We had 3 x-rays of Wyatt's pelvis to his ankles done before they had everything on the film that was needed. This film was much better than the one taken previously in January. His difference has doubled from .9 to 1.8. This may in some part be because of having a better x-ray to measure from.
We have the correct lift in his new shoes, and will not need to see Dr. Dahl for another year. He feels that his clumsiness is because of the leg length difference and that it is not unusual for kids with the same problem to have.
As long as Wyatt's difference stays below 2 he will not have to have growth plate arrest done. This is where they insert screws into the growth plate of the longer leg to stop the growth to allow for the shorter leg to catch up. Most Hemi and BWS kids fall into the 2-5 range and need this type of correction.
His appointment on Wed. at the HEM/ONC clinic was like always a nightmare. Our nurse thought that by postponing our trip to have his AFP drawn until this Wed. when we have our ultrasound and scans done that it would be saving us a trip, and therefore canceled the appointment. Needless to say, she created many other problems because we were also having other things done and then those departments also thought the appointment was canceled. Add the genetic counselor going out of town before the paperwork to send the draws to St. Louis was done and you have it, DISASTER!!
Not sure why it is so hard to understand that the AFP must be drawn every 6 weeks according to the protocol, not 7, 8, or 9 as they seem to feel is okay. And the news gets better(sarcasm), Wyatt's AFP test is up from 5.4 to 9.2. It should be continually decreasing, not increasing. The only other time we have seen an increase was on 1/30/2004 when it jumped from 7 something to 12, and then his Wilms was found on 2/4/2004. And this information was given to me this morning after I had to call to get the results that should of been faxed to us last week. TIME FOR US TO FIND AN ALTERNATIVE!
I have already zipped an email to Dr. DeBaun in St. Louis. I am sure that his suggestion is going to be to have the test repeated every two weeks until we are sure it is not increasing further. He does have scans on Wed. but usually the AFP will detect something before anything is seen on the scans.
This could be a hiccup, but with Wyatt's increased risk we will not be taking any chances or guessing at this point. In a child that has had no cancer this may not be as alarming. We were told to watch for the number to increase by tens, and hundreds, or thousands before he was diagnosed. Now any increase must be watched closely.
He also has some values in his routine chemistries that are out of sync that coincide with kidney function that we will have to get to the bottom of. waiting for Dr. Sianko, the nephrologist's nurse to call back with that appointment time.
The good news is at least I have time to research and email Dr. DeBaun and Dr. Beckwith if I need to before our appointment on Wed. I already made a call to Dr. Mendelsohn's office to see if we can get an alternative for his AFP draws. She ought to hit the roof after this latest fiasco. More proof that we really do need her new protocol to get on board for BWS kids.
On to happier subjects.....Wyatt, Carter, Ali and cousin Katelyn went to the Kids Cancer Fund Pumpkin Party yesterday in Delano. They kids had a wonderful time. We went out into the pumpkin patch on a hayride to pick our own pumpkin, they played games, ate brats and hot dogs and had a great time making a scarecrow! It was a beautiful day to be outside!!!
Only 3 football games this week! And I do not think I will be going to the varsity game Friday because Justin will not be there. He along with Bryce, and Jimmie will be gone in North Dakota duck hunting with Grandpa Rech.
Ali has a volleyball tourney on Saturday.
We are hoping for clear scans on Wed! I will update as I know more.
Have a great week! Enjoy the great weather.
Kris
Sunday, October 10, 2004 0:24 AM CDT
Hi everyone!
I just typed a new journal entry, but when I tryed to make a correction, it told me my connection has expired! Not cool.
So I will have to do the update tomorrow.
Wyatt is doing well, and I will give you updates on his appointments tomorrow.
Hope eveyone enjoys the great weather we are having!
Kris
Sunday, October 3, 2004 8:35 AM CDT
Hi everyone.
Sorry my updating has not been the most fantastic these days, but I have been busy being the taxi service and cheerleader at the kids events! LOL
This week will be the 3rd week in a row we will have 4 football games between Justin and Bryce. Friday night at Norwood was COLD, or maybe I should say FREEZING!!!!! I planned for it, but my toes were SO COLD by the end of the game, I was not sure if I would ever get feeling back. But the good news was the wind had died down some and it was not raining. It could have been worse.
Justin is at his confirmation retreat yet this morning. He will be confirmed on October 31. He has been busy with football and student council as well. Justin and Bryce have been trying also to get as much time hunting in as they can.
Bryce will be 13 tomorrow. We are having a party for family today, and he will be having a bash with friends soon. He is loving football, and it is so fun to watch the whole team and see the energy they have on the field. HAPPY BIRTHDAY BRYCE!
Ali has had a busy week as well, she was voted vice president of the middle school student council, and will be in the paper this coming week. She also had a volleyball tournament on Saturday and played very well. We are very proud of her.
Carter ran at the fun run on Thursday. He did well and was very excited about it. He still does not like school, but he is less vocal about it.
And now for the reason you are hear, Wyatt!
The Energizer Bunny has been doing well. He is indeed lasting longer between recharges, and is now fighting sleeping at all. BAD COMBINATION! So instead of a bunny, I have a monster. LOL It is a good thing we are in a vehicle going somewhere, and having him fall asleep, or I would have to lock myself in a closet to avoid him. He just gets so over tired that he does not know what to do with himself.
He has an appointment to dee Dr. Dahl on Tuesday at Gilette. They will do x-rays and maybe set up his full body scan, where they will be measuring all of his bones, (think of a skeleton of Wyatt's bones on the wall) to see how he is growing and to watch his leg length discrepancy. They do these studies to watch for his growth patterns so that they can determine if he will have to have the growth in his growth plate stopped to allow for his shorter leg to catch up and even his leg length out.
Wed. we will be back to Childrens to the Hem/Onc clinic for Wyatt's 6 week AFP draw and for an end of chemo party with staff and Drs. Jimmie and I will also be having blood drawn to send to St. Louis for genetic testing to confirm Wyatt's findings. Scans are coming up on the 13th. Hopefully lucky 13. As always these make me nervous.
I hope everyone has a week filled with SUNSHINE!! For our caringbridge families, I will try to make the rounds this week, we are thinking of all of you!
Love,
Kris
Friday, September 24, 2004 5:28 AM CDT
Well it has been a better week :)
I am recovering from a heart attack that I had when I was phoned and told that one of my best friends, Diane Smisek, finally signed Wyatt's guestbook. LOL Let's see that only took 7 plus months!!!
My little energizer bunny is awake upstairs in my bed with Jimmie who got home from work at 4 a.m. watching Smackdown wrestling, so I escaped.
As I said in my previous journal entry, having to put our lab Elvis to sleep was harder on me than the kids. They are so much better at taking things in stride than their mom. They do miss him, but are not at the point of playing the could of, should of , would of game that comes with adulthood. It has been hard, but getting better. I think Wyatt thinks he is on vacation, and doesn't quite understand.
Tuesday I met with Wyatt's genetist, Dr. Mendelsohn, and also a genetic counselor to go over his genetic testing results. I was immediately reprimanded for not bringing him with to the appointment. She has not seen him since that fateful day in February, when we found the tumor. She has always been one of our best Drs. and of course is in love with Wyatt, like the rest of the world.
Explaining the genetic testing to me was much easier for them due to the fact that we discussed at length this information while I was in St. Louis at the conference. Wyatt getting Beckwith-Wiedemann was a probaly a fluke. To confirm this Jimmie and I are going to have blood work done at Wyatt's next AFP draw on the 6th of October to be sent to Barnes-Jewish Hospital in St. Louis. The lab in St. Louis has enough DNA from Wyatt so we will not have to send labs for him.
What does this mean for Wyatt?
Because the genetic code resets itself with cases such as Wyatt's, called UPD, he has a very low chance of passing the Beckwith-Wiedemann on to his children. Of course there is continuing research being done, and by the time he will be having children hopefully much more progress will have been made.
It may also mean that outside factors may have not contributed to him having the BWS, such as my gestational diabetes that was not treated.
We also learned from Dr. Mendelsohn that she has submitted a protocol to Dr. Perkins, Onocologist at the Minneapolis Childrens, last week, for the treatment and screening of children with BWS and the subsequent cancers that coincide with it. This protocol will be used at the University, and Childrens St. Paul and Minneapolis.
This protocol is a direct result of Wyatt, and conversations that we have had with her since he was diagnosed in February. Wyatt was the first patient of Dr. Mendelsohn's, and the Hem/Onc clinics to have cancer diagnosed through the screening protocol recommended by the BWS registry Drs.
For those that have followed Wyatt on this journey, you will remember that one of our frustrations has been that the Oncologists do not treat BWS and cancer. With those two together comes different risks and screenings to accomadate those risks. This protocol will address these issues.
While we will still see some benefits to this protocol once it is approved as we continue screening Wyatt, it will be much more beneficial to any other child who is diagnosed. The frustrations we have endured will make another families easier, and for this I am thankful, and humbled that Dr. Mendelsohn has gone the extra mile to get the protocol submitted for approval.
I have also agreed to be contacted when a family is diagnosed and is seeking information. I went through support group information and let them know where we have found the most helpful information. I am glad that they are seeing a need to put people in contact with other families for support.
Our household has been very busy this week. It is homecoming week and with that comes floats that had to be decorated for the homecoming parade today, volleyball games and all school festivities after it, and the senior moms treating the football players to spaghetti last night after practice.
Bryce has had his first two games of football this week, and he is having so much fun. It is good to see the whole team enjoying themselves.
We will be going to the parade this afternoon and then to the Justin's homecoming game against Belle Plaine tonight. It will be followed by a bonfire at the Boyle's while Bryce and Justin are at the dances.
Of course duck hunting opens this weekend, and Carter cannot wait to get out there with daddy and Grandpa Rech.
Ali was nominated for Young Redbirds this week for her enthusiasm and selection to the student council. She will be in the Montgomery paper next week. Congratulations Ali!
Love, Mom and Dad.
Hope you have a good weekend.
Kris
Sunday, September 19, 2004 9:38 PM CDT
A new week! Hurray!
Sorry that I have not updated. It has been a not so fun week here. Please sign Wyatt's guestbook while you are here :)
Wyatt has been doing well, still has that rash ( tiny purple bleeding spots under the skin called petechiae) that may signify low platelets.( low platelets is called thrombocytopenia) We do not see wide spread bruising, so we are waiting and hoping that he will rebound on his own, which takes about 10 days.
He is finding more energy, and going longer between needing to recharge. Just think of the Energizer Bunny. He is very busy, (and sneaky, trying to escape outside as often as he can :) He enjoys locking the door on anyone who goes out the front door, then tells you that you must say please before he unlocks the door and allows you back in the house.
Tuesday night during the rain and thunder and lightening, I discovered that our lab Elvis was laying outside in his kennel. He does not like bad weather, so this was an immediate red flag for me. We brought him up on the back deck after discovering that he was throwing up in his kennel. It was obvious that he was losing weight and not feeling well. He continued throwing up, although he did drink water, and the Pediasure that Wyatt would not drink.
We made him rice, and ground turkey. He would not eat this either.
Wed. we took lots of pictures of him, he spent time in the house with the kids getting lots of love and attention from all the them. He usually will make a circle around the kitchen table and then wants to be back outside. Even when it has been very cold out, or storming out he has never wanted to be inside. We have had him in the house when we first brought him home, when he got hit by the bus, and after his two surgeries. At Christmas I usually brought him in to get him to take pictures with the kids by the tree,(hopefully without his lethal tail sending bulbs and ornaments from my tree everywhere LOL) this was a challenge as well because he did not want to be in the house.
Bryce wanted to let him sleep in his bed. But he was not any better and the decision to have him put to sleep had to be made so that he was not suffering.
When I came downstairs Thursday morning Bryce was on the deck with him, putting towels that he had in the dryer to warm for him in his kennel. He was still throwing up, but seemed to have more energy. His tail was wagging whenever you were near, and he loved the attention like always.
We took more pictures of him before the kids went to school, and you could see that he was getting tired. The kids gave him hugs and I took them to school.
I spent some more time with him, took pictures of him and Jimmie, and brought him in the house for a while before we took him to Faribault.
Of course this has been probaly harder on me than the kids. He was a member of our family. We have dealt with death in our family, including other pets. It was difficult for me. After all we have had him longer than I have had Carter and Wyatt.
I really do miss him, the kids do as well. When we first were married I said I never wanted dogs.
We bought him as a pup as a gift for Jimmie so he could hunt with him. Because he needed to have some corrective eye surgery, he would have not have been here if we would not have taken him. Jim reminded me that as a pup I saved him as I was crying my eyes out saying goodbye at the vet.
He was wonderful with the kids. Chased Bryce through the yard, biting him in the butt to get his ball back, playing ball or frisbee with the kids. Carter had claimed him as his, and not dads, and loved it when Elvis would sit down and want to shake with him. He had boundless energy, and loved to play in the water.
We have wonderful memories of him and hope he did not suffer.
Friday evening I went to the Justin's varsity football game with Bryce and then to Scheffler's to help with the football party. I was again reminded that we really have a great bunch of kids that go to school with our kids. And of course that means that their parents are doing something right as well :) They should be very proud of them.
This next week will be busy. We have only Wed. off from football games. We enjoy watching Justin play, and now Bryce will be playing his first game on Tues. We don't miss many games. Can you say bleacher butt? This is also homecoming week at school.
No time to be hanging out at Club Med.
Hope everyone has a great week!
Kris
Sunday, September 12, 2004 10:01 PM CDT
Hi everyone! SEPTEMBER IS NATIONAL CANCER AWARENESS MONTH, I HAVE INCLUDED AN ARTICLE AT THE TOP OF THE SITE.
It is quiet here right now. Kids are in bed, and even Wyatt, who along with Carter are the Kings of late night is asleep on the couch after falling asleep on Jimmie's lap. For those of you who know the Wild Man, you know that this is a rare occurence!
He has had a pretty good weekend. He caught the cold that has been making the rounds through our kids, and has been running temps, but they come down with tylenol, and were not enough to make me want to make a trip to Childrens Emergency room. (otherwise known as Club Med)
Wyatt, Carter and Ali spent the night at Grandma Rech's on Friday night. Mom and Dad went to Justin's varsity game in Mayer. He enjoys going to Grandpa and Grandma's. They have new baby bunnies that the kids had out for the first time this week.
He has had some bruising and probaly has low platelets so a trip to clinic will be on the agenda for morning.
We had an hour and 15 minute wait after being put in a room last week, hopefully we will have much better luck tomorrow.
After talking to the Oncologist last week he did not believe that the pain Wyatt is complaining about was chemo related. But after talking to his Ear, Nose and Throat Dr. I am not totally convinced. He feels that it could still very well be the Vincristine, which is a neurotoxin. Once the Vincristine does damage it takes longer to recover. Where as if you back off with the Vincristine before the damage is done you have better results.
We also discussed with the ENT Dr. the fact that he maybe going through a growth spurt and his jaw may be effected by some of the characteristics of the BWS and hemihypertrophy. Very logical answers making alot of sense to me after they were explained. We just need to watch, and make sure it is addressed even further if it still continues to be an issue.
Wyatt will not be having an MRI done on his next set of scans on October 13th, as both his Oncologist and Jimmie and I agree that doing the ultrasound as Dr. Beckwith suggested and doing further studies if something is found is sufficent. We did the MRI and CT at his last screenings and will have them to compare to new ones that if needed will be done if something suspicious is found. Wyatt does well with ultrasounds so that will be much easier for him.
No mention was made about his port, so it will be staying for now. We did not bring the matter up, as we would like to see it stay.
His evaluations through the school district for OT/PT are going well, and we will be discussing the results later this week.
Jimmie and I had a fun time last night with Diane and her boyfriend Dave, who is visiting from California. She says this is the one, and is talking kids.......and for once I am not the one that she wants to have them for her. HEHE Time will tell. He probaly thought we were crazy, Jimmie and her go back and forth with their one liners and smart answers, he probaly thought the three of us were loco!!!
Big week ahead, football games on Monday, and Friday. Ali has Volleyball Monday and Saturday. So we will be busy. I think my brain and body function better when I have an agenda.
All our love goes to the Krueger family from Germany who are again facing a difficult road on their detour. Lucas will hopefully begin new chemotherapy tomorrow for another aggressive tumor that has made its way to a blood vessel. He may need a stem cell transplant. This family is part of our Beckwith-Wiedemann Support Group, they could use your positive wishes.
We are thinking of all of our caringbridge families, Chance, Angel Mikki, Lexi, Autumn, Haley, Nikki, Noah, Haley, Sierra, Andrew, Abe, Jenna, Harlei, Julianna, Josh, Brooke, Dillion, Craiggy, Tuli, Ella, Lakota, Kate, Logan, Frieda, Abby, Angel Mason, Angel Savannah, Angel Brock and Angel Katherine. Angel Justin earned his wings last week. May his family find peace in knowing that he is soaring cancer free.
We also are celebrating with Lakota who is 100 percent donor cells and hopefully will be making the trip home for the first time in months after being in the hospital and the Ronald McDonald house this coming week. HURRAY!! WE ARE SO HAPPY FOR THEM!
I am going to be putting a link to their pages so you can visit as well. Hope I did not miss anyone :)
Hug your kids close, if they let you....Please hope that we find the answers to beat this horrible beast known as cancer.
Love and Hugs,
Kris
Tuesday, September 7, 2004 8:22 AM CDT
Alright, I added new journal last night. Where did it go? UUUUGGGHHH...... as you can see I have been working on Wyatt's caringbridge page, and making progress. A computer tech I am not!
SEPTEMBER IS NATIONAL CHILDHOOD CANCER AWARENESS MONTH. You will see that I added a few paragraphs with information about childhood cancer. We are a statistic, as well as many other families that visit this website on a regular basis. now those numbers have faces and families to go along with them. Those families have friends and neighbors.......
Childhood Cancer research is very underfunded. I know that I have mentioned before when we were approached about the Relay for Life events that the American Cancer Society does very LITTLE for children, yet has no problem using these very same children to raise money by making them very visible and the center of attention at these events. That REALLY bothers me. I do believe that they do good things, don't get me wrong, but not for children.
I took the kids to school this morning, this is their second week, it is hard to believe that the summer is gone already.
Wyatt has an appointment this morning at the HEM/ONC clinic in St. Paul to see his primary oncologist, Dr. Slomiany. We are trying to figure out just what has been bothering Wyatt when he complains that his mouth hurts. Is it his jaw yet from the side effects of the lovely Vincristine, which is a neurotoxin? Could it be his ears, which kids associate with their mouth at times?, teeth? I just do not know. It is not mouth sores that I am able to see. The fact that he continually complains about it means we can not overlook it.
We will also be discussing Wyatt's roadmap, a source of frustration for us for some time at the clinic. This will also be our first regular visit to see if any of the changes they have said they are trying to impliment make a difference in how our day goes.
The rest of the week is busy, Wyatt has two Physical Therapy appointments as well.
I hope everyone had a great long weekend, and that your week is super!
Kris
Monday, August 30, 2004 8:09 PM CDT
Hi everyone.
Have you signed into Wyatt's caringbridge page guestbook? We hope that you will. We have been having over 100 people a day visiting, but few entries, so PLEASE sign in, we look forward to reading your entries.
Well we just made our marathon open house run at school, 4 kids, 2 hours. Wyatt was full of energy and running everywhere. He catnapped on the way home and now is recharged. Heaven help us!
I have plans to redo our caringbridge page, putting requested items from others on the page and for a new look. Plus I am planning on a new slideshow with pictures from over the summer.
Wyatt has been having glimpes of the child we knew before this began. 2-3 hours at a time, and then he needs to recharge.
His AFP testing was within normal limits for even a child without BWS. Hurray.
He will be seen by his primary Oncologist, Dr. Slomiany, on the 7th for an exam and for us to discuss where we are headed, and hopefully to get the final correct roadmap for his future appointments.
We also have an appointment coming up with Dr. Mendelsohn, who is our genetist, and one of our very favorite Drs. She will be going in depth with us about his genetic testing that confirmed him having BWS. I have a pretty good feel for the testing already after going to St. Louis, but she will be able to answer those things that are still up in the air.
I am trying to get him in to see the ENT because he continues to complain about his mouth/throat and it cannot be ignored anymore. He will also be seeing Dr. Dahl, the leg lengthening specialist, and we will also need to see the physiotherapist, but that could take months, because he is usually booked out 4-6 months.
School begins Wed. and I am sure Wyatt is going to miss his siblings. We are hoping that it will not be too much of an adjustment for him.
September is Childhood Cancer Awareness month. I will post more about this later in the week.
I hope everyone has a good week, and a fantastic start to the new school year.
Kris
Monday, August 30, 2004 8:09 PM CDT
Hi everyone.
Have you signed into Wyatt's caringbridge page guestbook? We hope that you will. We have been having over 100 people a day visiting, but few entries, so PLEASE sign in, we look forward to reading your entries.
Well we just made our marathon open house run at school, 4 kids, 2 hours. Wyatt was full of energy and running everywhere. He catnapped on the way home and now is recharged. Heaven help us!
I have plans to redo our caringbridge page, putting requested items from others on the page and for a new look. Plus I am planning on a new slideshow with pictures from over the summer.
Wyatt has been having glimpes of the child we knew before this began. 2-3 hours at a time, and then he needs to recharge.
His AFP testing was within normal limits for even a child without BWS. Hurray.
He will be seen by his primary Oncologist, Dr. Slomiany, on the 7th for an exam and for us to discuss where we are headed, and hopefully to get the final correct roadmap for his future appointments.
We also have an appointment coming up with Dr. Mendelsohn, who is our genetist, and one of our very favorite Drs. She will be going in depth with us about his genetic testing that confirmed him having BWS. I have a pretty good feel for the testing already after going to St. Louis, but she will be able to answer those things that are still up in the air.
I am trying to get him in to see the ENT because he continues to complain about his mouth/throat and it cannot be ignored anymore. He will also be seeing Dr. Dahl, the leg lengthening specialist, and we will also need to see the physiotherapist, but that could take months, because he is usually booked out 4-6 months.
School begins Wed. and I am sure Wyatt is going to miss his siblings. We are hoping that it will not be too much of an adjustment for him.
September is Childhood Cancer Awareness month. I will post more about this later in the week.
I hope everyone has a good week, and a fantastic start to the new school year.
Kris
Thursday, August 26, 2004 9:34 PM CDT
Good evening.
Well we are once again football parents. Justin had the Red/White game tonight, and will play again on Saturday. Bryce will begin when school starts on the 1st.
Carter has deceided that he is NOT attending school this year. He is spending the night at Grandma and Grandpa Rechs
tonight and is tickled pink about it.
Wyatt went to the Hem/Onc clinic yesterday for his AFP test, counts to be done as well as having his port flushed. We went at 4:30, and we were the only ones in the clinic. What a treat. No waiting.....could it be like that every time we go? Many of his counts are still low in many area. It may just take time.
We did get a roadmap, and it is still wrong, but we are making progress.
After that we went to Gillette, which is such a wonderful place, to have a insert made for his new pair of shoes. We purchased them months ago, but because of the chemotherapy that slows growth we have not needed them. Bruce, from Assisted technologies, made the insert in under 10 minutes.
Childrens needs to go to Gillette for education on good customer service!
We also attended a pizza party for the leg lengthening clinic that Wyatt is seen at. He sees Dr. Dahl, who is so good with Wyatt, and who we really like. Cousin Susie went along with us. SUSAN!!!! Carter and Susie have a thing going between the two of them that began on our trip to St. Louis. Too funny!
We had fun with Joe, Nikki, Bleiz, and Zeah while they were home. They left on Tuesday. Zeah became Ali's shadow, and Carter and Wyatt loved playing with Bleiz. We wish they were closer.
SO MANY OF OUR CARINGBRIDGE FAMILIES NEED LOVE, HOPE AND SUPPORT RIGHT NOW. Our thoughts are with Mikki, who is soaring cancer free after earning her wings and all those lives she touched.
We are waiting to hear what Lucas' family learned today about where his treatment is headed. Please keep Dillion, and Noah, a.k.a. Fuzzy, Haley, and Josh in your thoughts as they are hospitalized, or dealing with setbacks. Josh, Lucas and Haley are all dealing with Wilms Tumors that have returned. Hugs to all of you and your families!
Well we have a busy week ahead of us. Hard to believe school is less than a week away.
Kris
Sunday, August 22, 2004 10:08 AM CDT
Hi.
Please keep the Brewsters from Watertown, South Dakota in your thoughts. Michaela, Mikki, is soaring cancer free with those Angels that have gone before her. She left us Friday evening, August 20th after fighting liver cancer.
She was a beautiful girl, Justin's age, just learning to drive, getting a car. Our thoughts are with her family, and all those that her life touched.
Wyatt, a.k.a. as the sand pile, just got out of bed this morning. He had a great time at the Rech family picnic yesterday. He went non stop all day, and was asleep on the way home, hence the sandpile that made its way into my bed.
He has enjoyed playing with his cousins, Bleiz and Zeah, who are home from Arizona, and who have been having sleepovers at our house. He has shared his gator with Bleiz, and enjoys hearing Zeah squeal whenever he touches her hair. Can you say Susie the second?
We took them to the fair on Thursday, and they loved seeing the animals. Zeah wants a Kangaroo now for Christmas.
Uncle Joe, who is a massage therapist, has been teaching the three older kids all kinds of new tricks. Like where your pressure points are so they can torture one another.
Wyatt seems to have something brewing, we just never seem to get a break from all the viral stuff. He has just not quite been himself the last couple of days. I tryed to give him meds last night so that he would feel better today. Usually after a big day, he pays dearly the next day. He is already saying his mouth hurts this morning.
No word from the clinic about his roadmap, so I will have to go one step higher on Monday. Guess I am going to be a hard head about it, but I am sick of doing their job, and had hoped that they were trying to change some things in the clinic. I would not do treatment at that clinic again unless they can get organized.
I will post a picture of the Rech bandits soon.
My heart is heavy, another Angels has her wings, please keep Mikki in your thoughts.
Kris
Wednesday, August 18, 2004 3:54 PM CDT
Hi everyone. Please sign Wyatt's guestbook, we know that there are a lot of you who visit, but do not sign, we truly look forward to hearing from all of you.
Our circle of caringbridge families continues to grow, we are so blessed to have the support and friendship of so many wonderful people.
Well we had Birth to 3 here yesterday to do Wyatt's evaluation, but we never made it to Wyatt actually getting evaluated. They were shocked that Wyatt had not already recieved services, and begin making notes and requesting copies of records. Many of which I already had here.
They will not need to evaluate him, they will just begin services on the 31st. One less trip to St. Paul.
He has been doing better in his gross motor skills, although he still has low trunk strength. One of the best ways for that to improve is swimming, but with low ANC, pools are not the best place for him. I think when he goes through growth spurts his leg length differential becomes a problem until he learns how to compensate for it. He becomes clumsy, hence the variety of bruises he has been sporting, and the tumbles on the stairs.
I called the Hem/Onc clinic yesterday looking for Wyatt's Roadmap, which is the schedule of Wyatt's coming appointments, blooddraws, and scans, but have not heard back from them yet. Of course I have an idea of when they need to be, but would love having everything written down so that I do not need to dig for the dates of the last visits, etc...It would be nice if they actually did it for me for once. One of the biggest frustrations we have had through this ordeal was the clinic itself.
If he does not have to be accessed before next Tuesday, Jimmie and I will flush his port here at home to help maintain it.
Sounds like we will have some much cooler weather this weekend. Happy sleeping!
Kris
Monday, August 16, 2004 10:24 PM CDT
Well, Wyatt deceided that we needed alittle excitement in our lives last night, or should I say this morning. He was running a temp, and woke up crying. So we came down stairs and gave him some meds and sat down at the computer and visited our friends. He was content to let me do the typing for once and just enjoy the pictures and slideshows. An hour later and he was back to sleep.
I have no idea what was up, he seems fine now, but I think Jimmie was shocked to find me downstairs when he came home from work! LOL
Tomorrow we will be having an evaluation being done in the morning. 9:00 am, before the little man usually crawls out of bed.
Today has been a little bit of a mixture of emotions for me. 2 of our Wilms tumor friends, Lucas and Haley are facing detours in their treatments.
Lucas, who is from Germany, had surgery Friday, and had a kidney removed. He is home, doing well and awaiting news of where his treatment is headed. Very serious stuff. One kidney and a high rate of reoccurence of Wilms in children with BWS.
Haley, who found out that the Wilms has moved to her cerebellum will be starting radiation to her brain along with the chemotherapy she has already started. She is a beautiful girl, who is a fighter, with an amazing smile.
We are sending all the positive energy we can to both, keep them in your thoughts!
September is Cancer awareness month, and I will be advocating for childhood cancer awareness. More info to come...
Kris
Monday, August 16, 2004 10:24 PM CDT
Well, Wyatt deceided that we needed alittle excitement in our lives last night, or should I say this morning. He was running a temp, and woke up crying. So we came down stairs and gave him some meds and sat down at the computer and visited our friends. He was content to let me do the typing for once and just enjoy the pictures and slideshows. An hour later and he was back to sleep.
I have no idea what was up, he seems fine now, but I think Jimmie was shocked to find me downstairs when he came home from work! LOL
Tomorrow we will be having an evaluation being done in the morning. 9:00 am, before the little man usually crawls out of bed.
Today has been a little bit of a mixture of emotions for me. 2 of our Wilms tumor friends, Lucas and Haley are facing detours in their treatments.
Lucas, who is from Germany, had surgery Friday, and had a kidney removed. He is home, doing well and awaiting news of where his treatment is headed. Very serious stuff. One kidney and a high rate of reoccurence of Wilms in children with BWS.
Haley, who found out that the Wilms has moved to her cerebellum will be starting radiation to her brain along with the chemotherapy she has already started. She is a beautiful girl, who is a fighter, with an amazing smile.
We are sending all the positive energy we can to both, keep them in your thoughts!
September is Cancer awareness month, and I will be advocating for childhood cancer awareness. More info to come...
Kris
Friday, August 13, 2004 10:48 PM CDT
Hi everyone! What a crazy weather week! Good, VERY GOOD, sleeping weather though.
Well Wyatt has been doing pretty well, he does complain of jaw pain, and I am not sure if that is a product of the Vincristine, or not. We usually give him tylenol, or if needed the codeine.
He is incredibly crabby tonight, to much fun at Grandma and Grandpa Rechs house today. Over tired. We bought Grandpa a new bunny, that is very soft, so the kids made him feel at home by feeding him carrots and playing with him in the house.
We have not had him into the clinic in about 2 weeks now, and it has been so very nice to not have to go. We have only had to deal with them for getting the supplies we needed for Jim and I to flush Wyatt's port ourselves, and also to advocate for better care in the clinic. It is amazing that when you throw us cancer moms together we all complained of the same thing, THE CLINIC! Hopefully they have listened and taken what we have said to heart.
His next appointment will be followed by a celebration with the clinic staff to celebrate the end to Wyatt's chemotherapy. HURRAY! Add the heart surgery to that list, and we are feeling pretty lucky:)
Football begins Monday, and then soon school will be starting, where does the time go? I feel like the kids got cheated this summer, and hope that now that things are settling down we can do more with them. It is my intention to get them camping before school starts, and we are going to drag Diane with us. HAHA, she likes to camp.
Uncle Joe will be home on Wed. with his family. We are looking forward to seeing him, it will be the first time he will have seen Wyatt.
Wyatt's hair is coming back in, and his cheeks look a little bit chubbier than they have in a while. Good signs, right?
Hope everyone has a good weekend. Sorry I did not update earlier and that I have not been around to visit all of our caringbridge families. We are still waiting for word on how Lucas is from Germany, and we hope Noah is feeling better and that Haley and Nikki's scans were both alright!~
Hugs to all of you!
Kris
Sunday, August 8, 2004 1:48 PM CDT
Hi everyone.
I can hardly believe that my van remained in the driveway yesterday and did not move. I cannot remember when it has sat in forever......(2 days in a row now)
Wyatt is still grouchy, but he is a cute grouch. He has needed to nap to recharge or else he truly he is a bear. No Drs. appointments for him last week, none planned for this week, although if this grouchiness continues he may need to be checked. He is not usually like this, although it could be the beginning of those terreible twos...and threes...LOL.
Not going to the Dr. for Wyatt has been a wonderful feeling. I finally went in and had my MRI, and has a beautiful bruise where they put the contrast in to prove it. It is a great shade of purple.
Well Cousin Susie is here to watch the race with me from Indy. So I am off. Please sign the guestbook while visiting, we really look forward to reading everyones messages.
Kris
Sunday,August 8, 2004 9:19 PM CDT
Just wanted to finish my journal entry.
We have a pretty quiet week ahead before football begins on the 16th and Uncle Joe comes home on the 19th.
We were able to grill out at Dianes on Friday, and this afternoon we watched the race and hung out with Susie for the afternoon. Great to be able to relax.
Now if we could only have that happy child who was ours before this detour began. He just is not 100 percent back to normal, but hopefully that day will be here soon.
Lucas will be scheduled for surgery this week, so we are hoping for good news from Germany. Corinne, Lucas' mother, emailed Dr. Beckwith after I told her how helpful he was to us, and he disagreed with his Drs. about doing the biopsy first for fear that it would spread into surrounding tissue. They are going in tomorrow to try and remove the mass and resect the kidney, although it is in a bad spot, without having to remove the kidney.
Because of the high chance for reoccurence for children with Wilms and BWS, it is important for them to try to save the kidney, and only take what they absolutely have to.
Lucas' situation has reminded me of that February morning when our detour began, how quickly things can change. and how diligent we must be. AND HOW LUCKY WE ARE :)
Hope everyone has a great week! PLEASE KEEP LUCAS AND HIS FAMILY IN YOUR THOUGHTS.
Kris
Thursday, August 5, 2004 7:58 PM CDT
CANCER SUCKS!!
CALGON TAKE ME AWAY.....
Wyatt has been funny one minute and grouchy the next. Nuetropenia at its best I guess.
Wyatt is learning what the word no actually means, not an easy task, and I am sure also contributing to the grouchiness. It is so easy to let him get away with things because he has been sick and is too cute, but he has become a tyrant that does not listen and for all of our sanity, no needs to mean no. He has also learned how to open doors, both front and the back patio, so you have to be on your toes. Snoopy has had several excursions compliments of Wyatt's opening of doors.
Jimmie, Justin, Carter and Wyatt stained our lawn swing this afternoon....and everything else in a 5 foot area. Needless to say I am not sure how much help the two little ones were.
This morning I was greeted with the news that Lucas Krueger, who is from Germany, and also has Wilms Tumor and Beckwith-Wiedemann Syndrome(BWS), and is a part of our support group for BWS, has another mass that was found during a screening. Lucas is currently undergoing chemotherapy and is using the protocol one step advanced from Wyatt. Many of you will recall that he was induced into a coma because his kidney did not restart after the last surgery to remove the Wilms.
His mother Corinne and I have shared many conversations to help one another and the new families that have begun Wilms Tumor journeys since February when Wyatt and Lucas both began theirs. Our hope was that Lucas would be following Wyatt's footsteps and be finishing soon.
The news devasted me. Compiled with Alex' and Celeste' death this week and the recent deaths of Katherine, Ian, Savannah, and Mason, it makes you wonder why these kids and their families have had to endure all that they have.
Jimmie asked me what was wrong, and when I told him that it really bothered me that Lucas was again facing a set back his response was there was nothing I could do. Maybe that is what bothers me so much. Children are dying because of this horrific disease that sometimes has no cure. Families are devasted, or torn apart due to the stress of the medical demands, and the financial strain. Children are learning what death is when a friend dies....WHEN WILL IT END!
NO CHILD, NO FAMILY, SHOULD HAVE TO ENDURE WHAT CANCER DOES TO THEM!
Some may wonder why do you go to these childrens caringbridge sites? Why do they come to Wyatt's? We all share a common thread, CANCER. Nothing to brag about, but something to support one another because of.
So many people tell us that they do not understand how we do what we do for Wyatt and the rest of the kids. The truth is you would do the same, you have no choice! You must deal with the hand that you have been dealt. Is it something we would choose? No, but we need to do what needs to be done to get to tomorrow.
Yes, I get frustrated. Many times, like when we went to see the cardiologist, you deal with people like the RN who took Wyatt's vitals who knew NOTHING about Wyatt or BWS. She was clueless to the point that I was beginning to get mad. Or like today when Lucas has a set back or you learn that another child, 4 year old Celeste has earned her wings. We know how those families both feel. We have dealt with the setbacks and buried our own children. Where is the reasoning?
Life goes on, you deal with the here and hope for the good tomorrow. We don't always understand, and maybe it is better that I don't because I may not like the answer.
Please keep these precious children and their families in your thoughts.
Kris
Tuesday, August 3, 2004 5:29 PM CDT
GOOD NEWS ~ GOOD NEWS
WYATT WILL NOT NEED HEART SURGERY! The ASD, or the hole between the upper two chambers of his heart, has closed and will not require repair. We are very lucky, and extremely happy to not have to deal with that surgery.
For the second time since Wyatt was born we also will be able to cross an "ologist" off of Wyatt's growing list of caregivers! My joke has always been that Wyatt has every 'ologist in the book.
He will have to have ECHO's done in the future to check for damage caused by the ACT-D, one of the chemotherapy drugs, that Wyatt was given. But those orders will come from the HEM/ONC department and not the cardiology department.
His counts were on a downward spiral when they were checked on Thursday evening in the ER. So it is important that we are careful with him until his ANC climbs again. 500's is nuetropenic and not where it should be post chemotherapy. Sometimes we have been told that kids need time for their body to "come back" after chemo, being nuetropenic means that Wyatt's body does not have very good infection fighting ability right now.
Coram home health care called today to let Jim know they would be sending out the materials for Jim and I to be able to access Wyatt's port and flush it so it does not clot. Much easier for us to do it here than going into the clinic to have it done. It needs to be flushed every 4 weeks.
Mt. Rech, otherwise known as the laundry pile needs attention. Good news is that Bryce is at Breezy Point with a friend from Faribault, and has not been here to change clothes five times a day, and he only took one duffle bag!
HEHE
Kris
Sunday, August 1, 2004 8:55 PM CDT
What a day.
So sorry I have not updated, I have been attacking my house today. Cleaning carpets, and the basement. Of course wouldn't you know it, the air conditioning has been freezing up and they are coming in the morning to fix it, but it is not working correctly today. UUUUGGGHHH....Which explains why I am cleaning the basement, it is much cooler down there! I am trying to organize all my craft stuff and go through some boxes of stuff to get rid of it.
Wyatt had a blast at Valleyfair, as well as the other kids. He really liked the Scrambler, the Flume, the Tilt-A-Whirl, and the Mild Thing. The Mild Thing is a kid roller coaster. Wyatt, Carter, and cousin Katelyn rode it at one point in the day 18 times in a row. He is a ride junkie!! We did have alittle rain, but we were at the park from 11:00 till close at 10:00 pm. Wyatt was asleep before we were to the stoplights on Highway 101.
Thursday morning Wyatt was sick and vomiting about 3:00 am and was running a temp for most of the day. He started complaining that his mouth hurt so we ended up in the ER. They checked him for strep and then did his counts. He is neutropenic. Which means his ANC is low. His hemoglobin was down alittle as were all of his other numbers. They figured it was viral.
Friday night was the dance. A big thank you to Jaqueline! Wyatt had a blast!~ He went non stop all night. We also would like to thank everyone who attended! Nikki Schultz also was there with alot of her family. So we celebrated both of them finishing chemo.
Saturday we worked on things around the house and did some errands. So many things to get done around here that have been negleted since Wyatt was first diagnosed.
Tomorrow we will be going to see Dr. Pyles, the cardiologist. We are hoping that the preliminary results that showed Wyatts ASD had closed are confirmed! That would be such good news and mean that Wyatt would not need surgery. Cross your fingers!
Well off to clean the carpet in the family room :)
Kris
Tuesday, July 27, 2004 3:28 PM CDT
First of all I just want to ask everyone to send positive thoughts to Haley, who had brain surgery yesterday to remove a golf ball size tumor from the base of her skull that may be Wilms Tumor. We are sending her lots of love and know that her family would appreciate the support. You can find her page at www.caringbridge.org/ne/haleygirl
Well we survived the Drs. office visit.
It was wall to wall patients there today. They told us when we checked in that they were way behind. We ended up in a hallway in another clinics room to be seen. Wyatt had a blast waiting though, they had a bullseye hanging on the back of the door with velcro on it and tennis balls that stuck to it. He had a great time throwing the tennis balls at the door. It also made waiting easier.
We saw a Nurse Practioner today that we have never seen before, Tammy. She was very nice. We talked about his return appointments or what we refer to as a road map, being incorrect. I am not sure if she knew this, or if it was because when she said we would be coming back in October for scans I said we would be back in 6 weeks for another AFP blood test. But either way we are on the same wave length now, and I know that I have have Dr. Beckwith and Dr. DeBaun to fall back on if something comes up and I am unsure of it. Makes it easier for me to relax.
We will be having Coram healthcare send out the Heparin for Jimmie and I so that we can flush his port to make sure that it stays open. Wyatt will need to have his AFP blood draws done every 6 weeks until he is 4 years of age. So it is very important that the port remains functionable until we do not need it, or he outgrows it.
We also will be having a party at his next appointment to celebrate the end of chemo with everyone from the clinic.
Not sure what his blood work is as of yet, they have not faxed it.
Tomorrow the we will be going to Valleyfair for the day for the HEM/ONC picnic.
Friday is the big Dance, we are looking forward to it, and are hearing from many who are going to come and help us celebrate finishing chemo. Thank you to Jaqueline for organizing and planning the party.
Well we hope you are enjoying the great weather! Wyatt and I took a long bike ride last night.
Kris
Saturday, July 24, 2004 8:29 PM CDT
Well this last week has been with no Drs. appointments for Wyatt, and it has been very nice.
After months of anticipation I finally received Wyatt's medical records. And was in for a surprise once I sat down and began going through them.
I realized after reading the pathology report that we were told different information than what is contained in the report. I clarified with Jimmie, to make sure that I had not just heard the explanation differently, and then faxed the report out for a non-medical persons explanation.
There is even a discrepancy through out the records from one Dr. to the next in how they interpret the pathology report.
The way Wyatt was treated for the cancer was aggressive, and hopefully will cause no ill effects later in life. It was not the wrong way to treat him, but has left questions that if treated another way may have been answered.
One of the major fall outs of all of this is that I went to the clinic and conference with the wrong information because I did not have the records yet.
We were told:
right renal mass: Wilms tumor
right kidney nodule: nephrogenic rest
left renal nodule: nephrogenic rest
Nephrogenic rests have the potential to become Wilms tumor, they are immature cells.
The pathology report tells us:
right renal mass: Wilms tumor arising within perilobar nephrogenic rest
right kidney nodule: Wilms tumor with adjacent nephrogenic rest
left renal nodule: hyperplastic perilobar nephrogenic rest
What does this mean for Wyatt?
1. Wyatt's right kidney was resected. At this point it is still functioning normally. Resection may have been avoided with chemotherapy before surgery. Only time will tell us if he will have problems. It is possible that the chemo would not have shrunk the masses enough to avoid the surgery after the chemo.
2. The left renal nodule was removed before it was given a chance to "declare" itself. If we would of watched that rest to see if it grew in size we would have known if it was also Wilms Tumor as well.
Dr. Beckwith emailed me back and this is some of what he shared and recommends.
He applauded the surgeons for taking the conservative approach and not taking the right kidney out. 2 years ago they would have removed the whole right kidney.
He would consider him most likely cured of those Wilms Tumors.
His main concern for the next few years would be the development of new tumors, rather than the reoccurence of the original ones.
The question about screening becomes pertinent, ultrasound is not as reliable as other methods, but it is less expensive, not as intimidating for Wyatt, does not involve radiation, and does not require sedation. He recommends getting a baseline CT and MRI, (which Wyatt had done on July 15th per Dr. DeBauns, who is from the BWS registry, recommendation) and then following with ultrasounds. If a suspicious change occurs than repeat a CT or MRI and compare it to the baseline tests.
He recommends waiting a few weeks if there is any doubt about what the significance of the change is. If it is Wilms Tumor it will grow at a very fast rate, and a repeat test should expose the change.
If a definite tumor is present and is easily resectable without removing much kidney tissue that is fine. But if the removal would involve serious loss of kidney function or is difficult for other reasons he recommends pre surgery chemotherapy treatment for Stage I favorable histology Wilms. If the lesion disappeared no surgery would be needed. If it continues to grow, get it out fast. Usually he said that they respond well and become easy to get out WITHOUT resecting the kidney.
We have much to learn about this, as kids first brought into the registry are now having difficulty with renal problems after there surgeries.
He reassured me that he will be here for us in the event of problems in the future, and that in itself has so much significance, because this man has the greatest knowledge about this syndrome. I wish I could hug him and tell him in person what that little paragraph meant to me.
I hope this helps everyone understand alittle better.
I am at peace about where we are headed and what needs to be done. Wyatt is at increased risk, especially these first 2 years when the chance of reoccurence is very high, but if it happens we should find it when it is small and has the best chance to be cured.
Hope the rest of your weekend is great,
Kris
Wednesday, July 21, 2004 9:39 PM CDT
Hi everyone, is it hot and sticky enough for you? Thank goodness for central air.
Wyatt has been doing well, still on the crabby end of the spectrum, but he has his lovable moments as well.
We will be seeing the Drs. on Tuesday for his AFP blood draw that checks for heptoblastoma.
I have emailed Dr. Bruce Beckwith, one of the Drs. that first diagnosed Beckwith-Wiedemann Syndrome (BWS) with Wyatt's information. We will hear back from him and then have a plan of action to follow.
We have wonderful Drs. at the clinic at Childrens. They just do not deal with Wilms Tumor and BWS together. That is where we are having difficulty, along with the horrible disorganization there. With only 300 kids a year born in the US with the syndrome and even less having Wilms Tumor, it is not surprising that they do not see kids with both. But on the other hand it is VERY IMPORTANT THAT WE ARE DILIGENT AND THAT WYATT IS SCREENED APPROPRIATELY.
Once we have Dr. Beckwith's recommendations we can move forward. It is wonderful that he makes himself available to all the BWS families.
The dance to Benefit Wyatt, that sweet cousin Jaqueline Green is planning, is being held on July 30, 2004 from 7-11pm at the Moose Lodge in Faribault. There will be a silent auction from 7-9pm. Come help us celebrate the end of Wyatt's chemotherapy! WYATT LOVES TO DANCE! We are looking forward to an evening of fun, family and friends.
Baseball, baseball, baseball for the weekend! It is playoff time for Justin along with a very important makeup game tomorrow night for seeding for the tournament. All the way to Minnetonka tomorrow and Victoria Friday, Saturday, and Sunday.
Bryce is enjoying Bethany's basketball camp. We have been having a good time on our drives over and back to Mankato. Today the boys let me in on who the "in couples" are in their class. TOO FUNNY. We also gave Brady Meister a new nickname of "Stitchie" because he required stitches after trying to skid across the gym floor with no shirt on on Tuesday and gashed open his chin. Nothing like making the camp memorable. They are a fun bunch of kids that like to do stuff together. Tomorrow Brady's mom will be doing the driving duties.
Hope everyone is surviving the heat :)
Kris
Sunday, July 18, 2004 9:17 PM CDT
Well I am living with a crabby tyrant. A.K.A. Wyatt. He must have gotten up on the wrong side of the bed. I am not sure if he is coming down with something, or if he is just having a bad day. I had to deal with a kicking and screaming monster when I was trying to get him to take a nap. He is screaming in his high chair as I type. UUUGGHH, early to bed for him as soon as his bath is done.
We are entering into a new phase in our journey. I am so relieved that the chemo is over! On the other hand I worry what each new day will bring. The last couple of days I have felt exhausted. Since February we have been working to this goal of finishing chemo. Now we are there and I have a break, and I think that it has all caught up to me. Before I was kept busy going from one day to the next of never ending Drs, appointments, etc..... It kept my mind off of things because you did not have time to dwell on things. Too much time on my hands. HAHA
Learning that we were not following the right protocol for children with Wilms and BWS has also frustrated me, along with going to the clinic and having them give us a road map for Wyatt to follow for the next 5 years that does not follow the recommendations either. Sometimes you hit your head against a brick wall and then just have to walk away.
I asked for copies of Wyatt's scans that I will be sending off to the Drs. that know best about BWS. These are the Drs. that are researching, submitting, and getting approvals for the protocols that we met at the conference. And then they will be contacting our Drs. and discussing what needs to be done. Knowing that we can go to them is a great feeling.
If we have problems we will be looking for a new clinic. It is as simple as that. No more frustration. There should have been none to begin with. Going to the the conference has shown me that I should not have to be the one cordinating his care. We pay dearly for the Drs. to do their job, and they can either do it or we will move on.
This week I will be taxing Bryce and 5 other boys to Mankato for Bethany basketball camp in Mankato in the morning. Bryce lives for basketball, and the others going are great kids. I am sure it will be a hoot.
Justin has two nights of games and then begins playoffs for basketball and baseball this weekend. We could be running between Victoria and Mankato.
It is hard to believe that the summer is half over. Watching Wyatt outside today, I noticed that he has lost more hair and looks older. We need to relax and enjoy all of them more. This has been hard on them as well.
Make sure to sign the guestbook, we look forward to your messages. I am off to get the tyrant in the bath and then in bed.
Have a great week.
Kris
Friday, July 16, 2004 5:00 PM CDT
TIME TO CELEBRATE!!!
WYATT'S SCANS WERE CLEAR. NO MORE CHEMOTHERAPY!!!
SO WE WILL CONTINUE TO HAVE HIS AFP BLOOD TESTS DONE EVERY 6 WEEKS. ULTRASOUNDS DONE EVERY 3 MONTHS. THE NEXT 2 YEARS ARE THE MOST CRITICAL. TILL THAT MAGICAL DATE WYATT HAS A 50 PERCENT CHANCE OF REOCCURENCE.
REOCCURENCE CAN HAPPEN IN THE KIDNEYS, USUALLY THE ONE LEAST AFFECTED THE FIRST TIME, OR IN SURROUNDING ORGANS OR WILMS FAVORITE SPOT, THE LUNGS.
SO ALTHOUGH WE GOT GOOD NEWS, WE STILL MUST BE DILIGENT.
WYATT HAS BEEN RATHER SILLY TODAY, THIS MORNING HE GAVE ME A KISS AND THEN TOLD JIMMIE, HAHA I KISSED YOUR MOMMY!
MAKE SURE THAT YOU CHECK THE LINK FOR WYATT'S SMILE QUILT BELOW AND ALSO PLEASE SIGN HIS GUESTBOOK. WE ARE SO GLAD YOU HAVE VISITED TO CHECK ON HIM:)
BEAUTIFUL KATHERINE CROSS FROM TEXAS, WHO HAD A BRAIN TUMOR EARNED HER ANGEL WINGS YESTERDAY AFTERNOON PEACEFULLY. OUR THOUGHTS ARE WITH DIANA, COLLIN AND NATHANIEL.
ALTHOUGH WE HAVE DEALT WITH CANCER I AM REMINDED THAT THERE ARE OTHERS WHO ARE NOT AS FORTUNATE AS WE ARE. WYATT HAS ALWAYS BEEN SUCH A HAPPY, LOVING AND DETERMINED LITTLE BOY. EVERYONE KNOWS WHO HE IS, AND LOVES HIM. MANY OF THE CARINGBRIDGE FAMILIES I VISIT DO NOT HAVE WILMS TUMOR. THEY ARE DEALING WITH CANCER, AND NEED THE SUPPORT AS WELL.
WE CANNOT THANK EVERYONE ENOUGH FOR ALL OF THEIR WELL WISHES AND SUPPORT. WE WILL BE PLANNING A FEW CELEBRATION EVENTS THAT WE WANT EVERYONE TO ENJOY. THE FIRST WILL BE THE DANCE THAT JAQUELINE GREEN IS PLANNING AT THE MOOSE IN FARIBAULT ON JULY 30, 2004. WE HOPE YOU WILL COME AND SEE WYATT AND HELP US CELEBRATE.
I WILL BE UPDATING WYATT'S SITE IN THE NEXT WEEK WITH NEW PICTURES AND WITH INFORMATION FROM THE CLINIC AND CONFERENCE.
HAVE A GREAT WEEKEND! JIM AND I WILL BE BASEBALL AND SOFTBALL PARENTS TOMORROW. ALI HAS 4 GAMES IN JORDAN AND BRYCE HAS HIS TOURNAMENT IN LONSDALE AS WELL.
NEXT WEEK JUSTIN WILL BE PLAYING ON TUESDAY, A DOUBLEHEADER AND THEN WE WILL BE TRECKING BACK TO MINNETONKA FOR THE MAKE UP GAME FROM EARLIER IN THE SEASON WHEN WE ONLY GOT ONE INNING IN. NEXT WEEKEND JUSTIN WILL HAVE HIS END OF THE YEAR TOURNEY.
KRIS
Thursday, July 15, 2004 9:32 PM CDT
Hi everyone. WE HAVE GOOD NEWS TO REPORT!!!
We have had another long day. Our day at Childrens began at 8:30 this morning. He had a sedated MRI with contrast, a chest CT with contrast, an abdominal ultrasound, and a sedated ECHO. We got home at 4:00 p.m.
Wyatt's chest CT looked good. No spots in his lungs. Hurray!
His cardiologist also made a point of letting me know that preliminary results of his ECHO show that his ASD may have closed. That would be so wonderful, and very unusual because of the size of the hole to begin with. That means he would not need heart surgery!
On the other hand we are still waiting for the MRI results. We know that they found something that they had to image further because they did contrast with the MRI and that was not originally planned. Wyatt has also been complaining of and waking up crying with right sided pain. We will have the results tomorrow hopefully. We are keeping our fingers crossed!
Justin had a game tonight in Chanhassen, they tied the game.
BIG THANK YOU TO SUSIE FOR COMING WITH US TO ST. LOUIS. Wyatt was asking where she was this morning. Her ears are probaly enjoying not hearing Susie, Susie all day long:)
Well I had every intention of writing my book again, (WYATT DELETED MY JOURNAL YESTERDAY BEFORE I SAVED IT) but do not have the energy to do it, and Wyatt is ready for bed too.
Will work on it tomorrow.
Kris
Friday, July 9, 2004 9:28 AM CDT
It was with good intentions that I began to write the journal to update everyone on our trip. After many, many paragraphs of writing Master Wyatts fingers erased all I typed. UUUGGGHHH.... We have scans tomorrow morning. A very important and critical day. Please keep us in your thoughts. I am exhausted and will try to update you all tomorrow.
Love,
Kris
********UPDATED**********
*****UPDATED AGAIN*******
Hi everyone from steamy St. Louis! It is hot and humid.
Our trip down here was uneventful, the kids slept until we stopped for gas at about 3:30 am and then they were up for a short while. Wyatt went back to sleep about 4:30 and then I drove until I could find a rest area. We slept from 5 to 6:30 am and then hit the road again. We were in St. Louis by 10:00 am.
Yesterday we got on the Metrolink and rode downtown to Union Station and the whole system. don't ask....it was a long ride.
We had a welcome dinner last night for Wyatt and I and Ali, Carter, and Susie went to visit the pool.
Today we are planning on going to Grants Farm and then Wyatt begins his Drs. appointments this afternoon.
We are having a good time, the kids have been good and are enjoying themselves.
Check in later.
Kris
Friday, July 9, 2004 8:02 PM CDT
Hi everyone! This is Kristine's cousin Susie taking her turn at this. Well, today we went to Grant's Farm which is run by the the fine people that own Budweiser beer. It is almost like a zoo. Many animals to see. From horses to kangaroos. We also saw an elephant show and the kids were given a shower from "Bud" the elephant himself. The favorite of the day was the little goats that the kids were able to feed bottles of milk. My favorite was the llama that stuck his nose on my camera lens while I was trying to take his picture. If your ever in St. Louis this is a great place and its free except for parking. Hope everyone is doing good and staying cool. Take care!
Susie
WOW It was hot here today, heat index here was 97. We were sweating just standing still.
Wyatt saw Dr. Marsh today. He feels that we will need to keep having Wyatt's jaw and teeth looked at every 6 months, but for now things look good. Good news for once.
The kids are having a blast, we went to Grants Farm, they were attacked by goats when they went in the pen to feed them bottles. Too funny!! We also saw the Donkey that is trying to be a clydesdale in the Budweiser commercial. They had so many things that we are planning on going back tomorrow for a while because we had to leave for Wyatt's appointment today.
Tomorrow we will be seeing all the specialists in clinic and going to the Magic House, which is the Childrens Museum.
Hope all is well at home. Update tomorrow.
Kris
Monday, July 12, 2004 8;41 pm CDT
Hi everybody.
Just wanted to let you know that we are still having a good time.
Clinic day on Saturday was a zoo (HAHA). They were looking at Wyatt as a research specimen, and all of us parents just wanted answers.
I felt like I was in school on Sunday, taking notes while listening to all the medical speakers. I learned so much, and when I get home I will take the time to let you know about all of that information.
This morning we had a parents forum, where we asked questions and answered them for other families, as well as having a presentation from the Netherlands support group for BWS. Conference officially ended at noon.
We spent the afternoon at the Budweiser Brewery in St. Louis, and the kids spent the evening in the pool. Tomorrow is a all fun day. Six Flags and then we will be off for home.
Have a good day, I will update at home when I won't have to deal with a relic of a computer.
Kris
Monday, July 5, 2004 8:56 PM CDT
Hello everyone!
Wow, only 2 more days till we leave for St. Louis! I am feeling a kinda of peace about going and am looking forward to meeting the faces of those I have come to know from our BWS family, and the Drs. who we have been communicating with and who are researching the syndrome.
My cousin Susie is going with us, she has been on other family vacations with us to Colorado and to Florida, and we are looking forward to spending time with her as well. We are planning to drive through the night so the kids can sleep, leaving Wed. night after Ali's softball game.
The BWS group has organized group activities at Grants Farm and the Magic House in St. Louis during our stay. Wyatt has Drs. appointments on Friday, Saturday and possibly Monday.
I have the two older boys to get organized for when we are gone and packing to do. Jimmie has been working hard on the laundry the last couple of days. I had lots of things to do today, but everyone had the day off.
Ali is very excited, she got spending money yesterday in her birthday cards and cannot wait. She had a good time at her party yesterday and loved her gifts. I do not think that Carter has realized how little time is left before we leave. If he did we would be fending lots of questions from him.
We fed the mosquitos at the fireworks, they were HORRIBLE! Quite a bumper crop. Hard to believe they were better up north.
Wyatt was not too sure about the fireworks last night, he kept asking to go back to the house. Grandma Rech walked back towards the house, but they did see all of them.
He has been a bit owly today, not sure what is up, I may have to break down and call to have his counts done so I know where we are at and if that is why he has been crabby.
He has been eating so much better. Of course he loves chocolate, especially those M&M's! He is the M&M monster. He could easily use to gain back a couple of pounds.
He has new fuzz coming in under what hair he has left. It is pretty blond from vacation. Even with us being obsessed with him keeping his hat on. He has been very good about that, you tell him to put it on and he usually does. Although he did send quite a few hats into the lake up north. Thank goodness for the fishing net.
Well time to bathe the fish. He took a nap, falling asleep about 5:30 and waking at 8pm. Needless to say he is full of energy:)
Not sure if I will make it back here to update, but I will try to.
Have a great week!
Kris
Friday, July 2, 2004 10:26 PM CDT
Good evening everyone. WE ARE HOME!
PLEASE MAKE SURE TO SIGN WYATT'S GUESTBOOK SO WE KNOW THAT YOU HAVE BEEN HERE TO CHECK ON US:) WE LOOK FORWARD TO SEEING WHO HAS VISITED.
We fished, and fished and fished. It was a slow week in that catergory.
Not sure that we would do it over again, but we had planned to go and oh well.
Master Wyatt cryed more this week than he has in a year I think.
He is sporting a new tan, and also has learned that if he pulls his hair...it comes out.
I will update more in the morning.
Kris
Saturday, July 3,2004 11:56 PM
Hi everyone,
Sorry I did not update this morning. I was trying to dodge rain drops and get the lawn mowed and weeds pulled.
It was nice to get away for a while, we had mixed feelings I think about vacation. It was great to get away, especially from all the medical. We may have had a more successful trip had we of been a couple of more weeks past that last chemotherapy. No way to plan for it though and so you do the best with what you are dealt.
Our kids love to fish, but the fishing was very slow. Carter was the king until Friday when I beat him for the most fish caught from the pontoon. We had the best luck catching Northrens and world class Dogfish.(WE TOSSED THE DOGFISH BACK)
Wyatt enjoyed seeing the fish and checking on them in the live well.
He had an okay week, cryed alot, some from being over tired and sore and some from hearing the word no. He has been so spoiled, that he cryed as soon as he was told that he couldn't do something. He did not want to miss anything, and so he took no naps, and that made things even worse.
It was GREAT to sleep in our own bed last night, and the kids were happy to see all their pets.
We are celebrating the 4th tomorrow as well as Ali's birthday. We live just up the hill from the fireworks in New Prague, so those attending her party will be able to watch the fireworks as well.
Then we will be packing and getting ready for the trip to St. Louis for the conference and the clinic.
Wyatt has to have a history and physical done on Wed. so he can be sedated for his MRI, CT, and ECHO on July 15th. We will be seeing Dr. Judy in Faribault for that. Kinda comforting, she has always been great with our family.
Jaqueline Green, who is a cousin, and Justins age, is planning a dance on July 30th at the Moose in Faribault to benefit Wyatt. We are hoping his screening goes well on the 15th and that it will be an end of chemotherapy celebration. I will post more as I get the info. The kids had such a blast at Kari and Jakes wedding dance, it will be fun to have another one. Thank you to Jaqueline!!!
Once again I would like to thank EVERYONE for all that they do for us and our family. If we haven't told you, or haven't seen you, please know that we truly appreciate everyones kindness and generosity.
Without all of you Wyatt would not be going to St. Louis. I cannot tell you how much being able to participate in the conference and clinic means to us. We will be seeing Drs. that know about Beckwith-Wiedemann syndrome and Wilms Tumor together. These are also the Drs. who are doing the research that will help Wyatt as he gets older, as well as others in our BWS family, who have become so special to us.
Well 99 loads of laundry to do........
HAVE A GREAT AND SAFE 4TH OF JULY HOLIDAY!
Kris
Wednesday, June 23, 2004 9:51 PM CDT
FRIDAY, JUNE 25, 2004 8:56 AM CDT
Hi!
Just a quick note for everyone.
BIG HUGS AND THANK YOUS TO JAN THOMPSON AND GARY BOTKIN FOR ALL THEIR WORK FOR WYATT'S BENEFIT ON MONDAY. TO EVERYONE THAT GOLFED AND JIM MUNGER, KEITH AND JILL NICHOLS AND EVERYONE FROM CLARKLIFT OF MINNESOTA FOR THEIR DONATIONS. WE CONTINUE TO BE OVERWHELMED BY EVERYTHING YOU DO FOR US:)
We had a great time seeing Nikki, Noah and their families on the Cancer Kids Fund boat ride on the Mississippi River. It was the first time we met Noah in person and he is one cute kid! Happy and having fun. He posed for pictures and I will add those when I get them back. Grandma Rech went with, and helped spoil the monsters.
Tomorrow we will be going to Gillette for another physical and occupational evaluation, and then to Childrens for blood counts and exam. (OTHERWISE KNOWN AS THE WEEKLY WAIT)
I will try to get on here on Thursday to give more news.
Kris
GOOD MORNING. THE PACKING BEGINS!!
We will be leaving for vacation tomorrow. Lots to do before then. Carter is looking forward to fishing, and I guess I am looking forward to just getting away, and not having to be anywhere at any specific time.
I finally finished all my paperwork for St. Louis.
Wyatt's evaluations went well, and we learned new things to help him with his abdominal strength. They were amazed at how well he is doing.
We then went to clinic for blood work. Quickest we have ever been through there. Of course we did not see a Dr. for an exam, but we did not remind Linda that they wanted him seen before we left for our exodus of three weeks. His counts are down from last week, which is to be expected because he had chemotherapy. His hemoglobin is back at 8.2, which is better than it has been for alot of his treatment, but not good.
His ANC was JUST over 1000. His platelets were 209. The last chemotherapy should be hitting his bone marrow, it usually takes 7-10 days, Wyatt has usually been "pokey" so it may still be a couple days off. We will need to be more aware of his surroundings, but being with his siblings and their germs is a GOOD THING:)
He has been a nut, can't wait to see the kids faces when we start catching some fish. (OF COURSE WE ARE GOING TO CATCH SOME RIGHT?) Grandpa sent the aqua view so they may be more interested in watching them then catching them.
Well gotta get things moving here, Sleeping Beauty Justin is going to take his permit test. Don't worry, he will be North for a week. I also have to check on cousin Derek who will be holding the fort down while we are away.
Have a great week, update everyone when we get back.
Kris
Sunday, June 20, 2004 8:57 PM CDT
UPDATE********
IT IS WITH A SAD HEART THAT I MADE MY VISITS TO THE CARINGBRIDGE FAMILIES TONIGHT.
PLEASE KEEP BRIAN, KELLIE, ALI,AND ERIC IN YOUR THOUGHTS AS ONE OF OUR CARINGBRIDGE FAMILY MEMBERS, IAN, HAS EARNED HIS WINGS TODAY, JUNE 20TH,2004. FATHERS DAY. CANCER IS SO UNFAIR. MAY THEY FIND PEACE IN THE MEMORIES OF HAPPIER DAYS WITH IAN.
**************
Hi everyone, Happy Fathers Day to Jimmie, my Dad, and Jimmie's Dad and all the other Dads out there.
It has been an crazy evening. Justin was suppose to play this evening in Burnsville. When we got there there were 4 teams waiting to play on the same field. We ended up playing the game back in Lonsdale at our field. They won, but there were people who were not so happy, including me after driving all over.
Wyatt enjoyed being at the park like always. Everyone loves him, and he gets so much attention. That smile of his is infectious. We have great kids on the team that talk to him and wonderful parents as well, that spoil him rotten. Nancy would take him home in a flash.
He has been running temps since Thursday. We were told that giving him some Motrin was okay, and it has kept the temps under control for the most part. We just need to watch for bruising, etc.. that is caused by low platelet volume. He has been doing pretty well. He has been napping everyday and this recharges his batteries:)
His ANC was only 1200 on Wed. at clinic before his chemotherapy. We expected that it would have been much higher because he had no chemotherapy for 3 weeks prior in his treatment plan. This is concerning because he received both drugs, and it usually takes 7-10 days to hit his bone marrow, which will be about the time we are ready to go on vacation. UUUUGGGGHHH....... We are crossing our fingers and preparing ourselves for the trip.
We will try and be careful with him beforehand and keep him away from those who are sick, good handwashing, the whole drill.
It is kinda a double edged sword. I really want to go on vacation, but I also do not want to be doing it with a child who does not feel well.
Friday evening we took the kids and Miss Katie, our neighbor, to see Shrek 2. It was a wonderul movie, way funny, with many lines meant for the adults. Wyatt loved it too, and did very well during the movie. He loves Donkey! The other kids liked it too, and Katie had a blast riding in the station wagon "backwards" to and from the movie.
Saturday we went to the parade in Faribault and saw Grandpa Rech, and got lots of candy! YUM CHOCOLATE! Wyatts favorite! He really had a good time with Grandma Rech, and his fishing hat was covered with every politians sticker adhered to it. It was a beautiful evening for a parade.
So this week will be hectic. His golf benefit is tomorrow. We will get to see Jan and Gary. We have 2 games on Monday, and a game on Tues and Wed.
Wed. we will be going on a boat cruise on the Mississippi with Miss Nikki and her family, along with other families that are dealing with cancer. It is sponsored by the Cancer Kids Fund.
Justin's social security card came in the mail Saturday, after I looked everywhere for it and deceided that the place I put it for safe keeping could have it. He will be trying to talk his father into going to take his permit test so that he can drive. The roads will no longer be safe! :) He is hoping to drive up north for vacation, not sure how I feel about that.
We will have to have Wyatts counts done before we leave on vacation. Probaly on Thursday.
Hope everyone is having a fun summer! We are glad things have become a little bit quieter in our household, and will be trying to relax and enjoy life alittle.
Please keep Lucas, who lives in Germany, and is part of our Beckwith Family, in your thoughts. His family was planning on going on vacation as well but Lucas' counts were too low for chemo last week. They will be rechecking them tomorrow.
Kris
Tuesday, June 15, 2004 9:27 AM CDT
UPDATE******WED. JUNE 15 5 PM
Wyatt had chemotherapy today, instead of Thursday. His ANC was lower than I expected after having a break from chemo for three weeks, but we will hope he hangs in there for vacations.
Nikki and her family were at clinic today also.
Softball tonight, oh don't forget the mosquitos. They are the pits!
Have a good night.
Kris
We have been busy.
Baseball, softball, basketball....
It is good medicine for the entire family. Including Wyatt and Carter, who get alot of extra attention from all everyone at the games. Now the mosquitos are a different story!
Both Bryce and Ali played last night and Jim was off so we each went a different direction. They both won and had a good time. It was Ali's first "real" game. I think I jinxed myself asking for rain because now we have sooo...many games rescheduled, they are ending up on nights I already have one kid playing.
Tonight Justin has a doubleheader in Lonsdale. We should get home about midnight??? Ali plays in Montgomery tomorrow, and Justin in Lonsdale Thursday.
I am working hard to get everything ready for St. Louis. The registry packet has to be sent in ahead of time. I need an administrative assistant. HAHA
Wyatt had a great ime at Derek's graduation party on Sunday. He was going 90 miles an hour the whole day. He really had a good time and now knows that cousin Ryan has a bass guitar that he is allowed to play. It did not take more than 6-7 blocks for him to crash on the way home. By the time we got to county road 42 he was out.
After we got home and he woke up he saw Carter was playing with his medical kit from Sarah, the childlife specialist at Childrens, and he ran after Carter and said "Carter playing chemo?" Too cute, but also alittle sad.
He had kinda an up and down day yesterday. He was really crabby when he woke up. And then he just needed to regroup from the day before. He took an early afternoon nap, and then seemed to be in a better mood last night.
We have chemo on Thursday if his counts are okay.
Well gotta get Ali to volleyball, and Carter to basketball.
Kris
Friday, June 11, 2004 5:56 AM CDT
Morning.
I must warn you I have just finished checking on all of my kids on the sites and have been sitting here crying for at least a half hour so if I ramble....forgive me.
Where to begin...it is not starting out to be a good day. As I have been sitting here it has begun to rain, kinda like my mood.
From the beginning of this journey we have been touched by so many people. Family, friends, and complete strangers. The journey has led us to new family and friends. Our Beckwith-Wiedemann(BWS) and caringbridge families are a source of support and love for us. The circle grows, and as it does Wyatt touches other lives, just as their children touch ours.
I have said before that cancer does not discriminate. As I made my rounds through the pages of other BWS and caringbridge sites I saw so many different families dealing with so many different situations. I know that I am not alone in this journey.
My heart breaks at the passing of another beautiful child, Miranda, and learning that Detzin will begin chemo today for Wilms, rejoices when it hears that Lucas is going on a 4 day vacation with his family, and that Craiggy had a wonderful time on his wish vacation.
I do not begin to understand why. I probaly would not like the answer anyway. But I want everyone to know that we have been touched by so many and that it truly means the world to us. We are so thankful for everything that everyone does for us.
Wyatt has been a bundle of energy the last couple of days, yes he gets super crabby when he gets tired, but so be it. It will be hard to face chemo on Thursday when I am seeing a bit of the old Wild Wyatt.
Vacation and St. Louis are coming. Cousin Susie Dahn will be going with to St. Louis. She has been a vacation regular with our family over the years, and it will be great to have her going with. Diane Smisek may also be going as well. Carter and Ali will be going with and will get to do some sight seeing while Wyatt and I are at clinic and the conference.
Many people have asked about the American Cancer Society Relay for Life. Although this is a wonderful event, very little of the money raised goes towards the research for childhood cancers or for programs that assist children. It is a very, VERY, small amount. So if you would like to do someting in tribute of Wyatt we ask that you support this caringbridge web site or Make-a Wish.
I also want to let all of the Rech family know what a great time Wyatt and Carter had with all of you at the wedding and dance. Also we nominated Andrea to be in charge of arranging a family up north outing, just like old times. (Hopefully she remembers the conversation.....)Such great memories.....
Please, PLEASE, sign the guestbook. We look forward to reading your messages.
Please keep all dealing with cancer in your thoughts...
Kris
Tuesday, June 8, 2004 8:19 PM CDT
Hi, who ordered the sauna?
I have a very wound up Wyatt, he is being a nut tonight.
We just got back not to long ago from Mankato, Justin played with the varsity boys in Bethany League because they were short tonight. They got beat, but I think they had a good time. It is thundering and lightening out so hopefully our sauna like conditions will be a thing of the past.
This is week 2 of the summer marathon. I did not rain yesterday, but everyone got where they needed to be. I was worried that it would be extremely warm at Bryce's game, but with the wind it was very comfortable, and the wind also kept those mosquitos away. Bryce's team won in the bottom of the 9th(they normally only play 7 innings) and Carter and Wyatt enjoyed playing on the playground in Lonsdale. Wyatt slept for at least the first half of the game, still trying to make up for the weekend I am sure.
Justin played in Jordan and they also won their game, and Ali just had practice, she will be playing her first game tomorrow in LeCenter.
Carter had his first day of basketball today and enjoyed playing. He was in good hands with Abby Pumper and Ben Peterson:) He will begin morning T-Ball on Thursday.
Next week we will be minus drivers training so we will have less running.
I have spent the last two days trying to get all Wyatts appointments organized and filling out paperwork for St. Louis. UUUGGHH....(thats saying it nicely) I see a light at the end of the tunnel though and am glad.
Wyatt needs to have a MRI, and a chest CT done for what is suppose to be his final week of clinic appointments on July 7th. He will need to be sedated for these tests.
He also needs to have an ECHO done of his heart to determine if his ASD has closed or if it remains open. Because of the importance of the test, and the fact that the technician is not kid friendly, doing it while he is sedated is preferred. His ECHO should have been done in May, but because of confusion and lack of organization from the clinic we will cordinate it with his MRI, and CT. This also means that Wyatt will only have to be sedated once.
We deceided today that we would wait until after we come back from St. Louis to do these tests. They are scheduled for the 15th of July. The HEM/ONC Drs. were not to keen about that because he will be without chemo while we wait to do these tests, therefor giving any remaining or new cancer cells a chance to get the upper hand if they are present. But as a mom I am looking forward to going up north the end of June and not rushing to get the tests done before we head to St. Louis for the clinic and conference. Hopefully we can be NORMAL(okay as normal as possible:)
Another advantage to waiting until we come back is that he will be seen by the specialists in St. Louis at clinic, who are much more knowledgable about Beckwith-Wiedemann(BWS) and who also have seen BWS kids deal with Wilms Tumor. They may have valuable information for us in determinning whether or not we do need to do the second look surgery and his ongoing care.
The Drs. at Childrens are not ruling out the surgery, they would like to see what his tests show first.
I am just glad that we will be going without having to dwell on what these tests reveal.
In doing his paperwork I also realized that his AFP tumor marker test was suppose to have been done on May 27th. We will not be having it done until next week because he will not be seen in clinic until then. Yes, for all the BWS family, I realize that this is not according to protocol, but as many of us know, when you have no knowledge of the condition you are treating we have problems. I am not sure if any other BWS kids have been treated by the HEM/ONC clinic in St. Paul, but am sure that it is a very small number. Our nurses response to me when I brought it to her attention that we would be 3 weeks off of the required testing was that "I don't think it will matter" Then why have the protocol? If I would have pushed harder or called the genetics clinic I am sure it could have been done, but at this point the less I see of them the better my sanity will be.
I come home from clinic emotionally exhausted. Dealing with the clinic and the disorganization at times is worse than dealing with the chemo. I am sure all the other cancer moms can relate.
We have a busy week yet ahead of us, Jim works this weekend, Justin has basketball and baseball Saturday, plus we are invited to 2 graduation parties. Dereks graduation party is Sunday. Derek is Jims nephew and Wyatt's godfather. Diane will be back home on Friday as well.
Jimmie and I will be married for 16 years on Friday. It does not seem that long ago.
Well it is time to see if I can get Wyatt in bed for the evening, I am tired, I just hope he is too! HAHA
Stay cool,
Kris
Sunday, June 6, 2004 10:43 PM CDT
Wow, who fed the mosquitos?
It turned out to be a beautiful weekend, and we were happy to see the sun out for Kari and Jake's wedding. Carter had a wonderful time, and did a great job. He enjoyed dancing and playing with the other ring bearer and the flowergirl.
Wyatt also had a good time. He was a bit crabby when the meal was being served and only managed about a half an hour nap the whole day. He enjoyed seeing all the relatives, including silly Uncle Kenny:) I will add pictures when I get them back.
Busy week #2 is coming up with Justin, Bryce and Ali all having ball tomorrow night, and Jim working. We will manage with the help of friends to get everyone where they need to be. Or maybe it will rain?.....
I need to really get to work on all the paperwork for St. Louis this week and try to get somethings organized and cleaned in the house. We are especially looking forward to no appointments in St. Paul on Thursday. Quick trip to Queen of Peace and we will be done. HURRAY, HURRAY! We will only have to go if he is not doing well.
I am looking forward to a productive week around here.
Congratulations to Kari and Jake, may they have many accident free years to come. To Wyatts Godfather Derek, alias "Dirtball," for graduating this past Friday, To Adam Mullenberg, who spent many days at daycare at our house and ate lots of pickles and hotdish on his graduation, and to not so little Amanda Blaschko on her graduation as well, may she always have that great smile!
Please remember Joseph and Detzin in your thoughts as they are members of our Beckwith-Wiedemann family and are both beginning detours with Wilms Tumor.
Sunny thoughts,
Kris
Thursday, June 3, 2004 10:00 PM CDT
Hi everyone.
It was a long day at the Dr. today. Somehow our appointment to see the physical therapist got double booked and we got to wait...and wait...and you guessed it....WAIT! So very frustrating. Wyatts counts were okay, down alittle from Monday. Good news is that we may not have to go next week. If he is doing okay, then I will have his labs drawn at Queen of Peace. They did a GREAT job on Monday when we had to have labs drawn. We had to take his gripper that is used to access his port and the medicine that we use to flush his port so it does not clot, but hey we were in and out of there within a half an hour. And the best part? The 5 block drive!
I tryed to get them to tell me where we go from here today at clinic, I was especially concerned about the second look surgery. We will finish with all our visits if all goes well on July 7th. (Ali's birthday) That is also the day that Wyatt and I are leaving for St. Louis. The last week of June we deceided that we were still going to take our fishing vacation as we had originally planned. So we are hoping that everything stays on track and that they do not say oh, by the way we need to have this second look surgery done the two weeks we have plans.
His treatment plan calls for him to have a scan of the abdomen and kidneys, which will be a sedated MRI, chest CT, and he will also need to have an echo done that was suppose to be done in May for the cardiology department to find out if that ASD has closed, or if we will need to have it surgically closed. So there are many things that could throw a wrench in our plans, but we will hope for the very best. I can not wait to get away from this routine!!
We will be leaving his port in because he will continue to need to have AFP draws done every 6 weeks to check for heptoblastoma. It is not easy to draw blood from him and this will make his life so much easier.
He has not been eating and drinking all that well, but I did see improvement tonight.
Mac is going to trim what hair he has left tomorrow morning. It is pretty fuzzy in back.
He had a blast last night at Justins baseball game. There had to be at least 10 of the girls from Justins class there and they played with him and took him to the park. Thank you girls! Wyatt looks forward to all of your cute faces:)
Kari's wedding is on Saturday and so far he is well enough to go. Getting him to take a nap will be a challenge. Carter is very excited about being in the wedding.
Well I am glad that this week is coming to a close. It has been hectic. The next two are also busy and then we have a chance to settle in and relax alittle. It is good that the kids are busy.
Sometimes staying busy keeps you going and makes it hard for you to dwell on things that are better left alone.
It has been a sad week on the BWS website, we have two more children that may very well have Wilms. It breaks my heart to know that someone else will go through what we are.
I am truly thankful for all of the wonderful people of the BWS family and our caringbridge family. They are a great source of support, and it is so nice to know that they are there when I need them. So many times just having someone who knows EXACTLY what we are dealing with makes the situation bearable. I check on many children in the caringbridge network of kids. Not all of them have Wilms Tumor. I appreciate the messages and support I get from them and I know that they feel the same.
Please sign Wyatts guestbook, I can not tell you enough how much we look forward to seeing who is checking in on buck:)When we can't always see you, at least we can feel connected.
Have a sunny weekend.
Kris
Tuesday, June 1, 2004 2:14 PM CDT
As you can see we have been doing major revamping of the website. I hope you are enjoying the new pictures. My hope was that you could see the pictures without having to go through the links.
I must apologize to those of you who are sick of the rain....I was hoping for the rain today. Too much on the schedule today and I was hoping for a cancelled baseball game tonight. So far so good....
Wyatt has been running a temp and has been grouchy today. We are taking him to Queen of Peace to have his labs drawn. It took 10 phone calls and some persistance, but we are having them drawn in the outpatient clinic here in New Prague. Hurray, no time to drive to St. Paul:) Plus if we need labs in the future we have crossed this bridge already.
We have an incredibly busy week here so I will try to update as I can. Justin began drivers training this morning. Ali, Bryce and Justin are at summer hoops this week until 4:30 and then Justin will have basketball mini camp until 6:00. We have baseball or softball games or practice Tues., Wed.,and Thurs. at 6:30 and Jim and Carter are in Kari Ross' wedding on Sat. so those 2 have tux fittings, rehersal and the wedding this weekend.
Not to mention the weekly clinic appointment and an hour long physical therapy evaluation on Thurs. EEEEkkk....
Thank you to Amy Schmitz for the wonderful bananna bread and muffins. Wyatt, Carter, and Jim enjoyed them....not much left for the other kids:)
Please keep Brianna, who has a rare form of bone cancer and whos father worked with Jim at Clark, and Angel Michelle, Angel Savannah, and their families in your thoughts. Cancer does not discriminate. My heart goes out to these families. We are blessed to meet such wonderful people through caringbridge.
Kris
Tuesday, June 1, 2004 2:14 PM CDT
As you can see we have been doing major revamping of the website. I hope you are enjoying the new pictures.
I must apologize to those of you who are sick of the rain....I was hoping for the rain today. Too much on the schedule today and I was hoping for a cancelled baseball game tonight. So far so good....
Wyatt has been running a temp and has been grouchy today. We are taking him to Queen of Peace to have his labs drawn. It took 10 phone calls and some persistance, but we are having them drawn in the outpatient clinic here in New Prague. Hurray, no time to drive to St. Paul:) Plus if we need labs in the future we are have crossed this bridge already.
We have an incredibly busy week here so I will try to update as I can.
Thank you to Amy Schmitz for the wonderful bananna bread and muffins. Wyatt, Carter, and Jim enjoyed them....not much left for the other kids:)
Please keep Brianna, who has a rare form of bone cancer and whos father worked with Jim at Clark, and Angel Michelle, Angel Savannah, and their families in your thoughts.
Kris
Friday, May 28, 2004 11:08 PM CDT
Hi everyone.
Wyatt has had a good day, he has been kinda crabby and not eating and drinking a whole heck of alot, but after getting both chemotherapy drugs this week that is to be expected.
We visited Grandma and Grandpa Rech this afternoon and mom got to go to the grocery store all by herself. Oh how little it takes to make me happy:) So I stocked up on the sale items and prepared to feed these bottomless pits for the first week out of school. Next it was off to Kwik Trip for many gallons of milk. At $2.69 a gallon, we buy many.
Wyatt enjoyed getting to swing with Grandpa and asked Grandma to make him kool-aid.
We have no big plans for the weekend, still not sure what Jims working for sure. But being at home catching up on Mt. Rech and cleaning is not such a bad plan either. It sounds like we are going to get monsoons this weekend again.
Well Wyatt is cranky and NEEDS TO SLEEP.
Have a good Memorial Day weekend.
Kris
Thursday, May 20, 2004 9:55 AM CDT
Good morning everyone.
If you have been watching the website you will see that we are trying to have alittle fun with the journal and the guestbook. The Miller girls, who lived kitty corner from us in Montgomery, and our family have been the participants.
We too miss you guys, but unless your gonna build me a new house, with a dry basement, and pay my water/sewer bill....I don't see it happening. Jimmie, the kids and I miss your smiling faces and Curly's ever changing hair color. I gotta say that we are probaly safer here in New Prague now that Bird Shit:) (also known at Bridget, hope that doesn't offend anyone) is driving. HEHE
Wyatt was up early this morning, he has been restless the last couple of nights. He is watching Scooby, waiting for daddy to wake up. His pox are disappearing and he was lucky to only get less than a dozen. He still has the temp thing going on and it is difficult to know if it is from the pox or just that low grade temp we have seen through out his treatment.
He was less than impressed with the thunderboomers last night, but thought it was funny to see mom and Ali running in the house while it was pouring out.
It is a great feeling not to be going to the clinic today! Of course we will be in St. Paul three days in a row next week, but what are you going to do.
Next week is the last week of school for the rest of the kids. Lots of field trips and picnics. And 6th grade graduation for Bryce. Then we have two weeks of drivers ed for Justin...yes you read right...prepare yourself...Justin will be driving.
Well daddy is awake. Hope everyone has a good weekend.
GO TIMBERWOLVES!
Kris
Tuesday, May 25, 2004 10:45 PM CDT
Hi everyone.
Sorry I have not updated lately. There does not seem to be enough hours in the day.
Wyatt has been to the Dr. the last two days and we are going to clinic tomorrow instead of Thursday. Monday he was seen by the physical therapy dept and he was seen in the clinic as well. He was required to put a mask on because of his chicken pox. They did not believe that his pox were dryed up. Nor do they believe that he was running a temp. So I will be bringing his thermometer with me on Wed. I'm just his parent, what do I know? They take his temp under his arm, we use an ear thermometer at home.
Today he saw Dr. Ballard for his eyes. He agreed he has drooping of the left eye which is caused by the vincristine. Because he saw him this morning when he was well rested he was concerned that it could be more noticable when he becomes tired. He also believes that Wyatt may need glasses in the future and wants to see him back in 6 months or sooner if the drooping becomes more prominent. He will also be able to see if there are any other optic nerve stigmatations then.
Wyatt will get both chemotherapy drugs tomorrow if his counts are okay. He will also have an ultrasound done. Cross your fingers please. We moved his day this week so we would be able to go to Bryces 6th grade graduation on Thursday.
We will get to see Nikki in clinic tomorrow as well. She also has Wilms and lives in Northfield.
Wyatts chicken pox are almost gone. He caught something, running a low grade temp, and has an infection in his eyes. He has been a grump. Was asleep early tonight, and took a nap this afternoon.
We went to Justins last game this afternoon. They 10 runned Belle Plaine. Then we came home and mowed the lawn before the monsoons come again. By then it was time to come in for the Timberwolves game.
Only two more days of school left for the kids. Justin, Bryce and Ali are into summer practices for ball. They are also doing summer rec and basketball this summer. I am thinking about taking a wall and making a big calendar on it. (HEHE)
I got the paperwork for the Beckwith-Wiedemann registry in the mail yesterday. Only about 100 pages of information to be filled out for Wyatt, and all of the other kids as well. FUN, FUN. I may need to send the kids away for a week. I will be calling family to help me with some of the information concerning family members. I will have to test your memories.
Wyatt is sleeping, so I am going to bed as well.
Will let you know how his appointment goes tomorrow.
Kris
Thursday, May 20, 2004 9:55 AM CDT
Good morning everyone.
If you have been watching the website you will see that we are trying to have alittle fun with the journal and the guestbook. The Miller girls, who lived kitty corner from us in Montgomery, and our family have been the participants.
We too miss you guys, but unless your gonna build me a new house, with a dry basement, and pay my water/sewer bill....I don't see it happening. Jimmie, the kids and I miss your smiling faces and Curly's ever changing hair color. I gotta say that we are probaly safer here in New Prague now that Bird Shit:) (also known at Bridget, hope that doesn't offend anyone) is driving. HEHE
Wyatt was up early this morning, he has been restless the last couple of nights. He is watching Scooby, waiting for daddy to wake up. His pox are disappearing and he was lucky to only get less than a dozen. He still has the temp thing going on and it is difficult to know if it is from the pox or just that low grade temp we have seen through out his treatment.
He was less than impressed with the thunderboomers last night, but thought it was funny to see mom and Ali running in the house while it was pouring out.
It is a great feeling not to be going to the clinic today! Of course we will be in St. Paul three days in a row next week, but what are you going to do.
Next week is the last week of school for the rest of the kids. Lots of field trips and picnics. And 6th grade graduation for Bryce. Then we have two weeks of drivers ed for Justin...yes you read right...prepare yourself...Justin will be driving.
Well daddy is awake. Hope everyone has a good weekend.
GO TIMBERWOLVES!
Kris
Tuesday, May 18, 2004 10:46 AM CDT
Good morning!
Please sign the guestbook. Make sure you check out the caringbridge photo section, I changed the pictures there this morning.
Wyatt has the chickenpox, as does Katie, who also lives in our neighborhood. Her number of pox beat Wyatts by quite a bit. He has been running a higher temp than usual for the last 24 hours. So we will be missing his appointments for the rest of the week. A nice break for the wrong reasons:)
I am struggling to get them to prescribe something for this "buggermania" that we have been dealing with for at least a month and a half. Not seeing the same Dr. accounts for most of this problem.
Wyatt is been in pretty good spirits, daddy has been home so they are up to no good. We have been trying to keep him in the house because of his pox. He gets tired easily and needs to sleep then. If not we have a crab.
Wyatt has become somewhat of a tyrant. He thinks if he makes enough noise that he will get what he wants. Him and Carter have been doing battle. He does not like the word no. Of course some of this is just the terrible two stuff, but he is quite spoiled too, it is hard to say no when he is so cute and sick......
For all those National Honor Society walkers THANK YOU!! PLEASE SIGN HIS GUESTBOOK!!! THAT ALSO GOES FOR THOSE MILLER GIRLS, ESPECIALLY THE ONE THAT WEARS SOCKS THAT DO NOT MATCH HER OUTFIT:) HEHE. GOTCHA.
Feel better soon Katie:)
Kris
Sunday, May 16, 2004 3:55 PM CDT
Hi everyone.
Please sign Wyatts guestbook so we know you have visited.
We walked today at the walk-a-thon that was held in Wyatts honor at the athletic complex in Montgomery and was sponsored by the National Honor Society. It was ideal weather and what a nice place to walk, the track is very nice. THANK YOU TO EVERYONE WHO WALKED AND PLEDGED IN WYATTS HONOR. Grandma Rech and I took lots of pictures and will post them soon.
Grandma and Grandpa Villwock were here before we went to the walk-a-thon and they brought us two quilts, one large one and a smaller lap size for us that were from the quilting group from Bethlehem-Elysian and St. Peters-Waterville.
So as you see we have been touched by many different people and their kindness. I am trying hard to preserve these acts of kindness for Wyatt. It is a double edged sword, we wish he could remember these things for himself, but we hope that he does not remember the hard parts of this journey. For the other cancer parents out there I am sure you know exactly what I am trying to say.
Wyatt began being treated last night for chickenpox. He has less than a dozen spots and his Dr. is hoping that he will have a mild case because he was vaccinated for the chickenpox before we found the cancer. He is now taking an antiviral medication every 6 hours for the next 10 days. Because heis immune system is suppressed it could spell disaster. I hope that is not the case. Only time will tell.
This week Wyatt will be seeing the eye specialist and be evaluated by Developmental and Rehabilitation services along with his weekly HEM/ONC appointment on Thursday. His ANC is around 900 and we would like to see that above 1000. His hemoglobin was back up just a bit from 7.5 to 7.7. The reason that they believe that he continues to have problems with this is hemoglobin is that his MCV is low. So he is lacking iron. We are trying to manage this with a supplement. No use giving him blood if he does not have the iron to support the red cells, because he is not low on volume.
The kids have been busy at school, only 9 days left for them. Jimmie and Carter will be in a wedding the first week of June for Jimmies goddaughter and Carters godmother Kari Ross. Carter is looking forward to wearing his tux, and him getting alittle special attention will do him a world of good. Sometimes he gets alittle sensitive about Wyatt getting all the attention from everyone.
Well the T-Wolves game is getting wild....
Have a good week.
Kris
Tuesday, May 11, 2004 10:04 PM CDT
Hi.
Please let us know you have visited by signing Wyatts guestbook.
Sorry that I have been so frustated as of late, it must be catchy, there are other moms within our support groups that are also feeling the stress.
I can honestly say that it is catching up with me. It is not only Wyatt, but also dealing with those who do not understand what we go through, and also Emilie and Randi. I feel horrible that I have not been to the cemetary to plant flowers and bring out the items we leave there during the spring/summer. The girls were also due on April 27th, so I have been thinking of them alot lately.
For those of you who feel we do not have time to spend with you. Please, PLEASE, remember that not only do we normally have a very active household with the kids and sports, but now we have a sick child and many more Drs. appointments to add to our already hectic schedule. Call us if we do not call you. Sometimes just being able to stay at home and do NOTHING is a big treat around here.
Wyatt has been a GRUMP today, alittle angel with horns (hows that, better?) he was up early and already taking a nap by 11:30. He has continued to run a temp and has that "bugger mania" going on. His cough was better last night and today.
He spent alot of time outside today and has been better about keeping a hat on. He came in from outside tonight kicking and screaming. He just finished a 'cuzzi (bath) and has rooster hair.
Because his counts are on a downward slide we are going to go to the clinic tomorrow instead of Thursday. He will not get chemotherapy this week. He was not scheduled to in the protocol, and could not get it anyway because his counts are low.
His chest x-ray taken last night in the ER at Childrens in St. Paul was okay. I was anxious about that for some reason last night. So it was a relief to hear it was okay.
We are going tomorrow prepared for Wyatt to be transfused with red cells. If he does need it they will transfer us to the short stay unit for him to be infused.
That meant that I had to scramble to make arrangements for the kids that would work the best for everyone. Thank you to the Boyle's, Janovsky's, and Diane Smisek for their efforts with kid patrol:)
Today we learned that a 4 mo old boy, Xavier, has hepablatoma. That is liver cancer that BWS kids are also at higher risk to get. Our thoughts are with him as he began chemotherapy to shrink the tumor so that it may be removed.
In getting prepared to go to St. Louis for the Beckwith-Wiedemann Clinic and conference, I have been learning alot.
Today I spoke with Jennifer, who is one of the genetic counselors at our clinic at St. Paul kids.
Wyatt was first tested for abnormal chromosones on Feb. 22. 2003. That test indicated that Wyatt did not have any abnormal chromosones. Because our first genetist did not feel that Wyatt had enough characteristics to have Beckwith-Wiedemann (BWS), but that he did have hemihypertrophy,(hemi) he began ulrtasound screenings every three months. Hemi also can put you in the higher risk category for childhood cancers.
It was not until we got a second opinion and switched genetists that we were told that Wyatt did have BWS based on clinical findings. On November 4, 2003 Wyatt had his first AFP test done and also had blood drawn for a mutation/deletion test that was sent to Washington School of Medicine in St. Louis where the test is read and the BWS registry is located as well.
That test indicated that Wyatts chromosone 11 has abnormal chemical methelation at the LIT1 and H19, confirming that Wyatt does have BWS. It also means that this form of BWS was not passed to Wyatt from Jim or I and that the chances of Wyatt passing it to his children is unlikely. That was good news and although we were told this at some point, hearing it now when we have had a chance to process everything is a relief.
The bad part of this is that LIT1 is highly associated with Wilms Tumor. Add the hemi to that and Wyatt was at a greater risk for Wilms Tumor since birth. We are lucky it was found early and that he was being screened.
There is much more information that has become available to us since the words BWS were first uttered to us when Wyatt was 3 months old. The testing done last November is also relatively new as well.
I am very thankful that I found the support group, they provide a wealth of info and support. I only wish I would of found them sooner.
I am also glad and very thankful to all of you for making it possible to attend the clinic and conference in July. So THANK YOU for supporting Wyatts benefits.
We will be attending the walk-a-thon sponsored by the National Honor Society from Montgomery on Sunday at 1:00 pm at the athletic complex.
There is also A Golf Benefit planned for June 21st at 10:00 am at Heritage Links in Lakeville. I will be posting the information for this by the end of the week.
Well it is off to bed, tomorrow will be a long day.
Thank you for all that you do for our family, we are honored and overwhelmed by your thoughtfulness.
Kris
Monday, May 10, 2004 10:11 PM CDT
Hello.
Wyatt is sleeping, in bed early for once, a rare thing for him. We just got home from the ER at Childrens. (My favorite place) He spiked a temp this afternoon and sounds like a seal. Croup is what they think it is, but we got a round of IV antibiotics because his counts are nose diving to be on the safe side.
His hemoglobin was back down to 7.5 and I asked about getting him transfused and was told no, he did not need to. So we will probaly wait till Thursday and then they will tell us he needs it. We have been debating this for over a month and now when his counts drop back down where they have said he would need the red cells they don't do it. Frustrating. The kids have a concert at school on Thursday, so with our luck he will have to have it done at his appointment Thursday.
As I am sure you all can tell, I am soooo.. tired of all of this, I cannot imagine what Wyatt is thinking.
He did however have fun outside until Mom checked his temp before I was going to give him tylenol. Carter, Kayla, and Wyatt were Gator riding.
We were lucky to not get any severe weather here yesterday. It went around us for the most part.
Well I am going to finish some laundry and watch the rest of the game if it is still on.
Have a good week.
Kris
Saturday, May 8, 2004 10:15 PM CDT
HAPPY MOTHERS DAY TO ALL THE MOMS OUT THERE, ESPECIALLY MY MOM, JIMMIES MOM, GRANDMA D, AND GRANDMA VILLWOCK!
Please remember to sign his book, even if you have in the past. We look forward to reading the entries and I am keeping them for Wyatt.
Wyatt has been enjoying the great outdoors, and has gotten better about keeping his hat on his head.
Thursday he did get both drugs, and in fact got more vincristine than he has in the past due to the change in the protocol. I have been especially concerned about this because being with him everyday I see more than the Drs. the changes in him day to day. They remind us that the chemo is to get him through this cancer, but as a parent I look at the effects the drug is having on my child and the damage to his nerves that is going to take months to a year to repair itself. I would be lying if I said this did not bother me.
I wish someone could raise a magic wand over us and free us from all medical personnel. One can only dream....maybe I should just ask to be reimbursed for every minute of my time they waste in the clinic. I cannot begin to tell you how frustrating it is for us to sit week after week waiting for them, or wondering if they know what is going on when we walk in the door. I think we will be having a party when we do not need to make those weekly journeys. The Drs. are wonderful, the disorganization is horrid.
But enough about that depressing subject...we have good news to report, we have a beautiful new neighbor, Brooke, who came home from the hospital today. She is precious. Congrats to Jeff, Paully, Ashley and Kayla. She made her apperance this afternoon in the cul-de-sac.
Wyatt has been running a temp all day and has been crabby. He drinks a ton, but is not much for eating, unless it is chocolate. We let him eat whatever he will eat. He likes freezies. He has the look of a ghost today.
Well I need to watch the rest of the Wolves game, have a good Mothers Day moms!
Kris
Wednesday, May 5, 2004 6:05 PM CDT
Hi everyone.
We continue to be overwhelmed by everyones generosity and well wishes. We are trying to keep everything for Wyatt so when he gets older he will have an idea of all the positive wishes and help everyone has sent him.
The National Honor Society from Montgomery-Lonsdale is doing a Walk-a-thon for him on May 16th at 1:00 p.m. at the Track complex in Montgomery.
I sent in his registration for the Beckwith-Wiedemann conference in St. Louis. He will be attending the clinic as well as the conference. Wyatt will also be entered in the registry for Beckwith-Wiedemann.
I am looking forward to meeting other parents with BWS and also hearing what the medical personnel that deal with BWS on a daily basis have to teach us.
As many of you already know this growth related disorder is rare and on many occasions I know more than the Drs. that are treating Wyatt know. It is a frustrating situation. Our new genetist was a rare example of someone who did, or who saught answers to questions that she did not know.
Wyatt is scheduled for chemo tomorrow morning, both drugs if his counts are well. I do think that the day has finally come that they will have to back off of his Vincristine. His left eyelid is becoming droopy, which is a side effect of the drug.
He has been having some very good days and it saddens me to have to take him in for chemo. Except for not sleeping well, which I think is because he goes non stop during the day until he is exhausted and sore, he has been good.
Well gotta go,
Kris
Monday, May 3, 2004 2:44 PM CDT
Good afternoon.
Jimmie is off to pick up the kids and deliver some of the winnings from Wyatt's benefit. The house is quiet which is very rare.
Wyatt had a great time at his benefit on Saturday, we were so happy that he got to go. Everyone enjoyed seeing him and he had fun playing with everyone. He slept very well afterwards, he was asleep before we got to Grandma Rechs.
This is the longest streak that we have gone without seeing Drs. (knock on wood) it has been WONDERFUL! WONDERFUL! WONDERFUL! Last week he did not get chemotherapy. The week before he got both drugs and now this week he will get both drugs on Thursday as long as his counts are good.
Yesterday we went to a HEM/ONC Cancer Kids Fund performance of "Free to be you and me" in Minneapolis. It was a private showing for the cancer kids. Afterwards they had wonderful munchies and kids games for him, Carter and Ali to play. They thought the performance was great.
Many thanks to those who helped at the benefit or donated especially the following, DIANE SMISEK, JENNY AND JEREMY WHITE, GRANDMA AND GRANDPA RECH, AUNT SUSIE (LULU) FITCHER, CORY STICHA, GREAT GRANDMA BLANCHE DAVID, SUSIE DAHN, ELIZABETH AND THOMAS SCHMIDT, ADELINE SMISEK, CONNIE THEIS, MARVIN SMISEK, ANDREA VOGELSBERG, KARI ROSS, JOYCE ROSS, AMANDA ROSS, UNCLE KENNY RECH, KAREN INGEBRITSON, PAT AND BILL BOYLE, SHERRY AND DELL COULTAS AND GIRLS, MARCELLA VON RUDEN, DON BROKL, REX KERN, JOHN BOYLE, STEVE KOTEK, MEGAN KODADA, RYAN FITCHER, JENNA BOYLE, AND THE HUNDREDS OF OTHERS WHO HELPED, DONATED OR ATTENDED. I AM SURE I FORGOT SOMEONE, MY APOLOGIES.
YOUR HELP MADE WYATT'S BENEFIT A HUGE SUCCESS!!!
Gotta go, Justin plays ball at 4:30 in Gaylord.
lOVE, JIM, KRIS AND WYATT
Wednesday, April 28, 2004 10:05 PM CDT
I am happy to report that we had a good day at the Drs. office. Wyatts hemoglobin was back at 7.9 so we did not need to get red blood cells. His ANC, which is the best estimation of the bodies infection fighting ability, was at 1280. That number means that Wyatt will be able to attend the benefit, as long as he has no detours before Saturday.
Wyatt however has been alittle owly today. Someone must of slipped him a crabby pill. (HA HA) I only hope it is not a sign of a downward spiral.
Carter went with us today. He spent time with Sarah painting and feeding the fish in the clinic and the hospital. He had a good time.
We spent time at Grandma and Grandpa Rechs today, we needed to take over a van load of items that have been donated and dropped off here. SO MANY PEOPLE HAVE BEEN VERY GENEROUS, I CAN NOT TELL YOU ENOUGH HOW MUCH WE APPRECIATE EVERYTHING THAT EVERYONE HAS DONE.
We are starting to get excited about the benefit, especially now that we know Wyatts counts went back up a bit. I would like to stress that this is NOT a formal affair, it is going to be VERY kid friendly. They have games planned for kids of all ages.
Tomorrow we will be attending the Hem/Onc Pizza party. So we will have two nights of excitement this week.
Wyatt enjoyed being outside today, we just need to find a way to get him to keep a hat on. Hope everyone had a chance to be outdoors today.
Kris
Tuesday, April 27, 2004 3:47 PM CDT
Happy Birthday Daddy and Grandpa Rech!!!
What do you suppose would be a good present for someone with Cabelas in the basement? I was thinking about what to get Grandpa.
Daddy had to work today so I did not have enough time to get all those spankings in before he left. I have been having a very good day. I got to go see Jan, Jeff, Keith and a bunch of others at Clarklift. Jan fed me Kit-Kats and I played on the forklifts:)
It is nice out and I was shooting hoops with Bryce. The battery is charged in my gator so I can cruise in that as well.
Tomorrow morning I will be going in to have an exam and bloodwork. No chemo this week, but I may need to have red blood cells and platelets. I am going in a day early this week because of my benefit on Saturday. I am going to win lots of cakes at the cake walk, so watch out Jenny!!
Carter gets to come with and try out the new sibling care area and play with Sarah, the childlife specialist, she is cool and fun to play with.
Thursday they are having a pizza party for all us hem/onc kids.
Thank you to everyone for thinking of me. Look for me in the papers.
Hugs and kisses,
Wyatt
Sunday, April 25, 2004 10:09 PM CDT
Hello.
Wyatt is awake and cuddling with daddy on the couch.
Thursday he did get both the Vincristine and the ACT-D. He also got a new form of Zofran, the anti-nausea medication, from the clinic. It is a dissolvable oral tablet that tastes like cotton candy and that he likes, which is the biggest battle. We love it because it allows us to not have to use an IV push Zofran, or the liquid Zofran that I got to tell you is awful, even with it flavored grape.
His hemoglobin had creeped up to 7.9, so we had hoped it would continue on its upward trend.
He spent the night with Carter at Grandma and Grandpa Rechs on Saturday after we had to take him in to the ER in New Prague to have his counts done and to have an IV antibiotic for the cold we have not been able to get rid of. he will continue on an oral antibiotic for 10 days.
His hemoglobin and ANC are both down. His hemoglobin is down to 7.5. He will no doubt need to be transfused this week.
I have added info for his benefit on the 1st of May under his picture. We look forward to seeing everyone and having a fun evening. THANK YOU to all that have organized, donated, or helped in anyway.
Have a good week.
Kris
Wednesday, April 21, 2004 9:45 AM CDT
Hello. I added new pictures in the caringbridge photo section.
Wyatt has been doing well, other than having a cold and being more clumsy we have been having some good days.
The rain has ended those arguements about having to come inside and the gator has gotten alittle bit of rest.
Sunday we lived by candlelight for a while because the power was out. The kids got a kick out of it I think and Diane was here to make things even more crazy. (HE HE) She spent the night and helped out which was very nice. I do not feel comfortable taking my prescription to help me sleep when Jim is working so with Diane here I was able to.
Wyatt watched Nemo yesterday in his own room which has not occured in quite some time. I think he has been feeling well enough to venture away from us for alittle while. He still loves his Ali, so when she is home he wants her attention. We also visited Grandpa Rech while in Faribault.
Ali and Bryce went to see Sarah, the child life specialist, at Childrens on Monday. Bryce will be giving his speech tomorrow on Wilms Tumor at school. She was very helpful, and the kids got good information and were able to ask questions.
Wyatt will be getting Vincristine and ACT-D if his counts look good tomorrow. If his hemoglobin is low we will be going back up on Friday to have him transfused. It is a time consuming process. They would type and cross him tomorrow and he would get his infusion over a three hour period on Friday.
Hope everyone has a good weekend.
Kris
Saturday, April 17, 2004 3:37 PM CDT
Hi!
What a beautiful day out. Wyatt has spent alot of time outside. He would spend more if he could, naps are so boring you know.
We have had a busy week, baseball for Justin is in full swing. He had two games for ninth grade on Monday and Tuesday. They won both. Thursday he played with the Jr. varsity and pitched for part of that game, they lost by 1 in extra innings. Wyatt was not feeling well so we did not go to that game.
Wed. him and Carter both got a bag of goodies from a religion class here in New Prague. They both have enjoyed all of those items, as has Ali, who was enlisted to make things with the clay. A big thank you to all of them.
Wyatt has a cold, caught from big brother Carter. He had just Vincristine this week, no ACT-D. They will try next week. He probaly should not have had the full dose of Vincristine. It affects the nerves, and he is having difficulty with his stability. Especially on the stairs. Yesterday he took a roll from the top of the stairs to the bottom. Scary. He is okay. But later in the day he fell outside and has a good scrape and knot on his head.
His hemoglobin is nose diving again and we will have to have him transfused next week if it does not rebound. That is a time consuming process, an hour to type and cross and 3 hours to infuse.
Jim has been working all week. Tomorrow will be the last of 7 days in a row.
The plans for the benefit on May 1st at the Elks Lodge in Faribault sound like alot of fun for the entire family. There will be games for the kids, a silent auction, and door prizes and a raffle. People have been very generous and there are alot of cool items. Mn Wild Authentic Gaborik jerseys, Twins and Timberwolves merchandise, hotel and dinner packages, all the way to tons of scrapbooking items. Wyatt hopefully will be well enough to go and enjoy Jennys cake walk and the fish pond.
Gary and Jan from Clarklift are also busy planning a golf event that I believe is on the 14th of June as well.
I will try and gather info and post it.
Bryce is learning more about Wyatts Wilms Tumor, and is doing a speech on it for school. We will be taking him to Childrens where Sarah will help him get all of his "props" ready for the speech.
Well someone needs a nap. The girls were going to take me out for my birthday tonight, but I think I will wait and go on a kid free evening. Girls night out.
Hope everyone has enjoyed the nice weather.
Kris
Saturday, April 10, 2004 10:42 AM CDT
Good morning! IT is snowing!! EEEeeekk......
I have had problems with the pictures on the caring bridge site, but there are tons of new ones on the club photo site. Hopefully I will be able to figure that out this weekend.
We just returned from a very cold Easter Egg hunt. The kids enjoyed it. Wyatt only got a few eggs, but he knows they are his and does not want anyone taking his bucket.
Wyatt has had 2 good days in a row. (KNOCK ON WOOD) He has been alittle sore, but he is in a good mood. He has been feeling well enough that we are able to take out his access to his port yesterday, and be without IV fluids and IV push zofran.
We spent Tuesday night in the ER here in New Prague because he was vomiting everything we were giving him including his pain medication. We were able to give him fluids but I could not give him anything for pain, so we went to see them and they gave him morphine and reaccessed him because his catheter, also known as "a gripper" was leaking. Nurse Sandy and Dr. Wilcox took very good care of him. Sandy did a great job with him. She was honest about not dealing with kids and ports, but you would never of known. We had excellent care.
His appointment on Thursday went well. His counts were up enough that he did not need to be transfused, and he had his vincristine. Carter had the day off and went with and spent some time playing with Sarah, who is a child life specialist in the hematology/oncology department. He got to learn what the Drs. do, and got a play kit for him and Wyatt to play with at home. The neighborhood kids also got to play with the medical kits.
We have chicken pox in the cul-de-sac. So we need to be watchful and careful that Wyatt does not also get it. His immune system is already compromised. Chicken pox and immune compromised kids do not make a good match.
Diane and Jenny were here yesterday, and Wyatt showed Diane what gator riding was. She unfortunately did not have on appropriate running shoes. HEHE
We are hoping for a quiet weekend free of all types of medical personnel.
Hoping everyone has a great Easter! Kris
Hugs to Abby. Bleiz and Zeah stop feeding those cats steroids, they are huge! Love Wyatt
Tuesday, April 6, 2004 4:32 PM CDT
Okay, I know that there are those of you who are waiting for those pictures. It has been crazy here and I will get them on TONIGHT for sure. I have many of them to add. More of the kids with the bunnies and pictures from Wyatts hospital stays as well.
Wyatt is looking good today. We took him off the continuous IV fluids this morning and are hoping he will drink enough to stay off of them for a while. He still has a catheter in his port so I am still able to give him IV push medications.
He has been eating well today. Digging into Great Grandma David's candy jar this afternoon while we were visiting and also enjoying a bismark from Frankes Bakery.
This last week was difficult, he only has had so many good hours during the day, but we are SOOO....thankful for the small IV pump so that we could be mobile and take him outside and let him play and ride his gator. It was wonderful.
He will have chemotherapy on Thursday again and probaly need to have a blood transfusion as well. They will be looking at his treatments and making a decision on what to do from here.
It is hard to see him going through so much of this, as everyone knows he is such a happy child any other time, and even during all of this.
We are looking forward to some good weather, but heard that snow could be in the forecast. EEEeek! Only in Minnesota.
Wyatt and Carter are looking forward to the Easter bunny and Justin will be playing baseball already next Monday and Tuesday if the weather cooperates.
Hugs to everyone from Wyatt.
Kris
P.S. To those of you who are not signing in we may need to name some names. Maybe we should start with ABBY PUMPER!!
8:00 pm
Wyatt has been vomiting again and will need to be on fluids again so I am going to ask Justin to upload photos for me. The pictures will be there, but they probaly will not have captions.
Kris
Friday, April 2, 2004 8:30 PM CST
It has been a long week and we are glad to be at home.
Wyatt is fast asleep on the couch, he was able to get a couple of hours in outside this afternoon playing with the neighborhood kids and riding his gator.
He is on a continuous IV with IV push medications.The pump we have is the size of your hand and allows us to be mobile with him.
He has been running a temp all day. He has not eaten very much since Monday. Tonight he had a couple of saltines, some chips the kids were eating, and a couple of bites of cereal. His stomach bothered him afterwards, even with the Zofran for the nausea.
We asked to come home on Thursday. It is much easier for everyone to be home, and we were told he probaly picked up the virus from being in the hospital last Friday and Saturday. They told us as long as we were comfortable with the IVs and the medications we could be discharged. Both Jimmie and I are more than willing to learn to keep him at home. Jimmie was not too keen at first but he does fine now. Him and Wyatt are a team on chemo days, they have their own little ritual.
Dr. Moertel feels that Wyatt has "pokey bone marrow." Which means that Wyatt's bone marrow takes a longer time than others to regenerate. Wyatt's body is not tolerating the chemo very well. It is hard on him, but that also means it is hard on the cancer cells as well. Because his hemoglobin has continued to fall he will probaly need to be transfused next Thursday. His treatment may need to be altered because he is not tolerating the chemo. They would adjust the dosage amounts.
He now will be evaluated for physical and occupational therapy in the next two weeks as well.
We have some more great bunny pictures to add along with pictures from his last hospital stay. Look for them tomorrow.
Wyatt is asleep so I am going to follow his example. Hopefully he will be up to going to the Easter egg hunt in the morning. I wanted to let everyone know how he was.
Kris
Thursday, April 1, 2004 5:30 PM CST
Wyatt is home, we asked to blow that popsicle stand for home. There was nothing that they were doing that we could not do at home so we asked to be discharged. He will have IV Fluids and will have IV medications through the weekend.
I will add to this later after we have a chance to settle.
Kris
Wednesday, March 31, 2004 7:45 PM CST
Hi everyone.
Just wanted to let everyone know that Wyatt was hospitalized yesterday afternoon about 3:30 for vomiting, dehydration and fever. It is likely that he picked up a virus from here during his last stay over the weekend.
He has slept the majority of the day, and has had many diaper changes. We have gone through a bag since being admitted yesterday of 22 diapers.
Daddy is here now after getting the other kids situated for the evening so I was able to get a break and get out of the room. Wyatt is isolated. So there are no wagon rides for the boy. He has not ate or drank much of anything since being admitted.
We are on the 4200 floor, room 4216. 651.220.6100
I will update you as I can, we could be here a couple more days.
Kris
Sunday, March 28, 2004 8:07 PM CST
Hello.
Both Wyatt and I took a nap after coming home from the benefit brunch that was held in Wyatt and my cousin Heidi's behalf. We would like to thank everyone that attended and especially those that helped in any way.
We visited with many people who we have not seen in many years. But there were also many of the neighbors and church members that I grew up with there. Many of them helping in the kitchen, some of them who still call me Tina from when I was little. Seeing them brought comfort.
Wyatt was only there a short time as his ANC, or differential, is to low. The ANC is the best estimation of the bodies infection fighting ability. An ANC of over 1000 is acceptable. Wyatts was only 816 on Thursday, and that is why they did not give him the Dactinomyicin. Dactinomyicin lowers his ANC even more.
Friday Wyatt was not himself. After not drinking and eating much all day we ended up taking him into Childrens ER to have his port accessed so he could be given fluids and have blood work done. His ANC at midnight was 370. He was hospitalized for fever, dehydration and Neutropenia, (low ANC) and given fluids and antibiotics overnight. His ANC Saturday was down again to 350. We got home 5:30 Saturday afternoon. It is amazing what fluids can do for him, but as we have seen before it is like having a different child when he is dehydrated.
He was given great care on the 4th Hem/Onc floor. Special thanks to Tom and Neina for taking such great care of him, as always.
Now we must be careful with him. We need to make sure those in contact with him wash their hands. We need to avoid large crowds at high traffic times, and we need to keep visitors in our home to a minimum. We have to watch for temperatures, although he constantly runs low grade temps from the Vincristine. Dust, plants, stuffed animals are all places for bacteria to grow. Having everyones help with this will make our job easier.
I was given much reading material. This is a learning experience for us too.
Wyatt and Carter are both enjoying the new fish, we have a Nemo and Marlin, two clownfish. It was a great idea.
Once again, thank you to everyone who was a part of todays benefit. Those that came and those that worked. We truly appreciate all of the wonderful things that everyone has done for us since this journey began.
With much thanks,
Kris
Thursday, March 25, 2004 3:10 PM CST
Its raining its pouring.....
Wyatt asked what those big thunder boomers were. He is not to sure about all the noise and lightening. Of course it did not help that we were in the van either.
He did pretty well today at his appointments. He first had his blood drawn. They drew that first because they need the results back before they give him the Dactinomyicin, one of the chemotheraphy drugs. Then he had an ultrasound done. He got inpatient there but that is to be expected for a two year old who is made to sit still and wait. We had a new tech today, who asked alot of questions and was not as quick as the two girls who usually do his ultrasounds. His kidneys looked good. But there is concern that because the two small spots that were found in surgery were not seen on the ultrasound or CT that we will need to have either a CT or MRI done the next time he will need to be screened.
Having a CT or MRI done means that he would have to be sedated. We already have had one CT done so we have a baseline for that, but his last MRI was when he was in the NICU and we would need to establish a baseline scan. The good thing about the MRI is that it does not expose Wyatt to any radiation. Sedating him would also be much easier because of his port. His next screening would be in 6 weeks.
Then we went back to the clinic and waited to see Dr. Slomiany, who is wonderful with Wyatt. We discussed his blood work and because his ANC is low Wyatt did not receive the Dactinomyicin today. We will push it back till next week and hope his bloodwork is better. We will be watching his walking and running to see if his nerve ending are being affected by the Vincristine, the other chemotheraphy drug. If it truly is they will back down on that. Otherwise he looked great. We will have to be more careful about him being exposed to someone who is sick until his counts rebound.
His hair is thinning considerably, and it breaks my heart, more because it makes me acknowledge that he has cancer and it is a constant reminder.
He had his pictures taken yesterday at Swensons in Faribault with Ali and Carter and two of Grandma and Grandpa Rechs rabbits. So we will share them with you when we get them.
Well we have been enjoying getting out in this nice weather. Wyatt has figured out that mom was putting the Gator in low gear (2 and a 1/2 mph) compared to high gear (5 mph) and he much prefers the high gear. So you have to be alittle more diligent in watching him so he is not running into anything or anybody! He is a CRAZY DRIVER! As for the rain today, hopefully it is washing some of the dirt away! The lawn already looks alittle greener.
Kris
Saturday, March 20, 2004 1:09 AM CST
Good morning....or should I just say morning. lol
I have added photo to Wyatts albums at club photo. The latest ones are from his chemotheraphy treatment on Thursday. They will give you a picture story with captions of what he does while he is there.
Wyatt just went back to sleep, he has been incredibly fussy this evening. But Bryce was able to "race" with him to take his codeine so I am hoping that he is asleep for the rest of the morning.
He still seems very sore and achy at times, and he gets very tired easily. He fell asleep on the way home from the cities and would wake up crying and wimpering and then go back to sleep. But at times you would never know that he is sick. We may need to try an antidepressant that is also prescribed in low doses for chronic pain.
He loves to be outside and has enjoyed driving the Gator into the big puddle at the end of the neighbors driveway. He also has learned how to dribble a basketball, which is so cute.
We are setting up an aquariam for salt water fish and are hoping that the water is ready for fish tomorrow. Wyatt has really enjoyed all the fish at Childrens in St. Paul, especially the ones that remind him of the movie Nemo. Nemo, Dory and Bruce are watched quite abit in this household.
Well I think I have been successful. It has been quiet here for at least 15 minutes, except for the two cats which seem to enjoy fighting with one another and flying around the house. They don't pay any attention to me.
Have a good weekend.
Kris
Tuesday, March 16, 2004 8:45 AM CST
All is quiet here. Wyatt slept very well last night. He also took his medicine before he went to sleep and I am sure that helped him have a good nights rest.
We are in the high part of the cycle. This is the time that we usually see him feeling better before he gets hit with the chemotheraphy again on Thursday. We try to get him outside and out and about these days.
He did not have pink eye, HURRAY, which is great. That spreads between the kids so fast. So it was a relief to hear that Dr. Judy did not think he had it. He was however alittle touchy yesterday about being at the Drs office.We weighed him there so I could really see what his weight was on a scale we are familiar with and have a procedure for weighing Wyatt. He has lost alittle weight, he is down almost a pound from his weight at his 24 month well child check from November 03.
His skin appears to be darkening, with is a side affect of the dactinamycin, one of the chemotheraphy drugs.
His temps were very close to normal yesterday.
He sat really well for his haircut yesterday. What a ham. Mac breezed right through it.
Finally we have some news from the Kruegers in Germany about Lucas. They were unable to remove all of the tumor from his kidney. They have brought him out of the induced coma and his kidney has restarted. He has had high blood pressure, vomiting, and poor renal circulation. He will have to continue chemotheraphy and also may have to have surgery in the future. Not good news but we were all waiting on pins and needles for ANY news. Lucas also has Wilms Tumor. We think of the Kruegers daily.
Please also keep little Lena in your thoughts she will be having surgery tomorrow for neuroblastoma.
Well I am going to take advantage of the quiet household and get some work done. Carter is in school today and NO ONE has any appointments or after school activities today.
Just Jim working.
Kris
Monday, March 15, 2004 8:07 AM CST
Good morning!
Another week is upon us. February was here and gone quickly.
This morning Wyatt is going to be getting his hair cut. I was not sure if I was going to have it cut but decieded after talking to Mac that it was a good idea. His hair is thinning so I was alittle anxious about getting it cut.
We did not have a great weekend here. Saturday was shot sitting in the ER at Childrens. Yesterday we enjoyed not having to go anywhere and caught up on Mt. Rech, the laundry pile.
Wyatt continues to run a low grade temp, and we think it is viral. Probaly a cold caught from brother Bryce. He is going to be seen this afternoon By Dr. Judy, he may have pink eye. We deceided alittle hometown care was better than driving to the cities.
Last night he was hilarious, talking a mile a minute, and having a grand old time. We of course wanted him to go to bed, but could hardly be mad at him when he was being such a nut.
I am going to try and find a way to get him to sleep at night better. Call it my "goal of the day." Last night he had a ruff night and when he is tired he does not want anything to do with taking medicine, which I am sure would help the situation.
Well I need to get Wyatt ready for his appointments. Have a good week. Think spring.
Kris
Saturday, March 13, 2004 7:59 PM CST
Well our Saturday did not go as we had originally planned. Seems to be a common occurence around here these days.
Wyatt had a temp yesterday morning that was 101.5. By afternoon it was 99 and we had hoped it was not going to be a problem anymore. He had a good afternoon and by bedtime last night it was obvious he was not feeling well.
After talking with the Oncology department in the morning we were told not to give him Tylenol because they were afraid it would mask whatever was developing. He also has straight codeine for pain and we gave him that, or at least attempted to, at 1 am when he woke up crying. It is not the most pleasant flavored medicine, and he spit out most of what we were trying to give him. The rest of the night he was fitfull and not feeling well.
This morning his temp was 101.8 and 102.1 so we had to take him in to the ER at Childrens in St. Paul. It was not a good experience, from the minute we walked in the door it was obvious that wires had been crossed and they did not have a clue. It is always frustrating when you know you are more informed then the person that is suppose to be providing your child care. At one point we had a lab tech come in and say he was going to draw blood from his vein. HELLO, that is why we have the port, but he replied that perhaps they needed these tests drawn from a vein. I politely told him that we would NOT be accessing a vein and that someone had already been in to access his port. The nurse returned and she accessed his port and drew the labs.
So after his labs came back okay for a child undergoing chemo, they gave him a course of IV antibiotics and are hoping it is viral, although his blood cultures take 48-72 hours for the final reports we will be talking with them again in the morning. It is possible that they could show growth within the first 24 hrs.
He has slept for a good part of the day.
This trip to the ER has made us never want to return so we are hoping that we will see him feeling better on Sunday.
He has been drinking kool-aid non stop tonight, and is watching a DVD with the kids now. He enjoyed getting packages yesterday from Uncle Joe and his family, and Roger and Lori Mullenberg.
Well we are going to call Uncle Joes to talk with Bleiz and Zeah. We are hoping for a non eventful day tomorrow. HEHE
Kris
Friday, March 12, 2004 7:34 AM CST
GOOD MORNING.
WYATT DID VERY WELL YESTERDAY AT BOTH OF HIS APPOINTMENTS.
THE ENT WAS GLAD TO SEE HIM TO CHECK ON HIS PROGRESS AFTER HAVING HIS TONSILS AND ADNOIDS OUT. WE DISCUSSED THAT BY HAVING HIS TONSILS AND ADNOIDS OUT THE AIRWAY WAS NOW MORE OPEN, AND THAT IF WE COULD GET HIM TO BE MORE OF A "NOSE BREATHER" THAT WOULD ALSO HELP. EVERYTHING LOOKED GREAT AND SHE WANTS US BACK IN 6 MONTHS TO REEXAMINE HIM AND TO CHECK HIS HEARING BECAUSE SOME OF THE CHEMOTHERAPHY DRUGS CAN DAMAGE A CHILDS HEARING. WE ARE GRATEFUL TO DR. MALONE FOR STEPPING IN AND DOING HIS PROCEDURES WITHOUT SEEING HIM FIRST TO ALLOW WYATT NOT TO HAVE TO UNDERGO ANOTHER SURGERY. OUR REGULAR ENT, DR. HAMLAR WAS IN BOSNIA ON ACTIVE DUTY.
HIS CHEMOTHERAPHY APPOINTMENT WENT WELL, HE ONLY HAD VINCRISTINE YESTERDAY. HE WAS ALITTLE CRANKY BECAUSE HE WAS TIRED, BUT ALL IN ALL HE DID GREAT. THE CATHETER WENT INTO HIS PORT AND WITHIN 15 MINUTES WAS OUT. DR. MESSENGER BEAT DR. MORTEL INTO THE ROOM TO EXAMINE HIM, AND TOLD WYATT THAT IT WAS NOT FAIR THAT WE GOT TO TAKE THE HAPPY BOY HOME WITH US. DR. MORTEL OF COURSE HAD NO IDEA THAT DR. MESSENGER HAD ALREADY EXAMINED HIM AND WAS SURPRISED TO SEE WYATT DIGGING IN THE PRIZE CHEST AND ON HIS WAY OUT THE DOOR. EVERYONE ALREADY KNOWS WYATT.
HE VISITED GREAT GRANDMA DAVID AND TOTO, OTHERWISE KNOW AS "TOAD, TOAD" YESTERDAY AFTERNOON. CARTER OFFERED A TRADE OF SNOOPY FOR TOTO, BUT GRANDMA WASN'T DEALING. AFTER KISSING HER GOODBYE AND 3-5 MINUTES IN THE VAN HE WAS ASLEEP.
HE HAD A PRETTY GOOD EVENING. YOU COULD ALREADY SEE THAT HE WAS SORE AT GRANDMAS BY THE WAY HE WAS WALKING. HE DID HOWEVER LIKE THE NEW GRAPE TYLENOL MOM GOT HIM AND DID TAKE HIS VIOXX DISGUISED AS VANILLA PUDDING. AFTER THAT DREADFUL BITE HE WANTED NOTHING ELSE TO DO WITH THAT. HE HAD CODEINE BEFORE BED AND SLEPT PRETTY WELL, HE WAS ONLY UP TWICE, AND BOTH TIMES AFTER COMFORTING HIM AND GIVING HIM A DRINK OF HIS BELOVED CHOCOLATE MILK, HE WAS BACK TO SLEEP.
THIS MORNING HE IS RUNNING A TEMP OF 101.5 SO I AM WAITING ON RETURN CALLS FROM THE HEMATOLOGY/ONCOLOGY DEPARTMENT. I HAVE NOT SEEN HIS BLOOD WORK YET THAT WAS TO BE FAXED YESTERDAY AFTERNOON, AND THE NURSE HAD NOT FOUND IT WHILE ON THE PHONE WITH ME THIS MORNING.
HOPEFULLY WE WILL NOT HAVE TO TAKE HIM IN. IT IS JIMS WEEKEND OFF. WE WERE HOPING FOR A QUIET DAY AT HOME UNTIL IT WAS TIME TO PICK THE KIDS UP. JUSTIN HAS TO SEE THE SPINE SPECIALIST AND ORTHOPEDIC DR. THIS AFTERNOON AND THEN WE ARE REWARDING THE KIDS FOR GOOD GRADES BY TAKING THEM TO CHIPOLTE FOR BURRITOS. YOU KNOW IT IS SUCH A HARDSHIP TO HAVE TO TAKE THEM TO JIMS AND THE KIDS' FAVORITE PLACE TO EAT IN THE STATE.
I HOPE EVERYONE HAS A GOOD WEEKEND.
KRIS
Wednesday, March 10, 2004 8:16 AM CST
Well we are once again mid week, and Wyatt is feeling great. It is at times like this that you wish as a parent that you could just zip him on a plane and take him away from all of this. That is especially true for me today knowing that tomorrow we will start the downhill slide again after chemotheraphy. And it will probaly be true next Tuesday and Wednesday as he once again is his happy go lucky self.
Last night he stayed with Grandma and Grandpa Rech while mom and dad went to Justins sectional varsity game in Hayfield for basketball. They lost, but both 9th graders, Justin and Charlie, got to play limited time, with Justin getting four shots off. They were incredibly nervous, but had smiles a mile long after the game. Ali, Bryce and Justin are finished with Basketball now.
We had originally wanted to take Wyatt with because everyone wanted to see him, but deceided to be cautious and keep him out of a large group. He also gets VERY cranky when he gets tired so we did not want to make things difficult for him. The girls were disappointed, especially Abby, but we let them know that Wyatt would love healthy visitors at home.
He had a blast at Grandma and Grandpas, the rest of the kids also stayed there as well. Ali made caramels, Bryce made cookies, which I am sure was so he could eat the cookie dough. Carter ate, and Wyatt made a mess, had a bath, and got gifts along with teasing Grandpa and Jack Tutak. And he sent Bev Tutak home with a kiss.
He also had a present from Abby Pumper to open that she had hoped to give Wyatt at the game. Baseball season is just around the corner, and she is hoping to spend some time with him during the games.
Once again we will be going for chemotheraphy at Childrens Pediatric Hematology/Oncology clinic in the morning. Wyatt will be seeing Dr. Malone first, the ENT that took his tonsils and adnoids out, and then we will be going to Childrens.
Before we go we put Emla cream on the skin above his port to numb it so that when they insert the catheter needle he will have very little pain. This allows them to draw blood, administer the chemo, and give him medications, through his line. Last week he did wonderfully, did not flinch. He has always had alot of Drs. appointments in the past, so he does not know life any differently. For a two year old he does extremely well. He says thank you, helps them hold the stethoscope and move it when they are listening to his heart and lungs. He will move his head from side to side to allow them to check his ears and lift up his arm to "wait for the beep" as they take his temp. For a while he told us "to get your hands off" and now I think he understands that the port does not hurt, where as before he went crazy when you went anywhere near it.
We are still working on the medication routine, but most of that is dependent on what kind of mood he is in. We are trying to find Tylenol flavors that he likes, and I am checking to see if the Vioxx and the Zofran can be flavored to see if we can get him to take them better.
Well all is quiet here, everyone is still asleep, so I best get moving and get some of my work done this morning.
Wyatt would love to have healthy visitors! Just give us a call.
Kris
Sunday, March 7, 2004 5:10 PM CST
Hello.
It has been a rather quiet day here with Wyatt, he took a 4 hour nap this afternoon, which is HIGHLY unlike him. He is rested and full of energy. He has had a low grade fever all day, and I am unsure of what has caused it. He is in much better spirits after taking his snooze.
It will hopefully be a quiet week for him until Thursday when he will be seen in the ENT clinic as well as having his weekly chemotheraphy. He will also have his AFP testing done this week. His blood work was okay, not great this week. Dr. Messenger, who we love, told Wyatt if he got tired of us, he would be happy to take him home with him.
We think that he is still having muscle and joint pain, it is hard to know for sure because he cannot tell you, but he seems to be stiff especially after he wakes up. He hates the Vioxx that has been prescribed for this purpose so we try to get him to take Tylenol or the straight codeine. Getting him to take medicine at all depends on the type of mood he is in at the moment.
We are hoping that he is feeling better and able to make it to the basketball game on Tuesday. The kids' friends are anxious to see him because we have not had him with the last couple of weeks. He has gone from going to all of their activities to none. I am sure he misses getting out and seeing them as well.
He and his siblings are lucky to have such great kids as friends. We enjoy watching them all interact, from the seniors all the way to Wyatt. Everyone knows him and he knows everyone. It is a benefit in going to a small school, and one of the reasons I think the kids did not want to switch from Montgomery to New Prague.
Well it sounds like spring is going to win out over winter this week. Hurray. Have a good week.
Kris
Friday, March 5, 2004 8:55 PM CST
Uuugghh..... The snow returned! And it was plenty heavy. The kids were home from school. The two smaller ones, Carter and Ali were out the door by 8 am, and the two older "sleeping beauties" were in bed till 10:30 when dad rudely awakened them to help mom shovel.
Wyatt made good use of the morning catching up on his sleep. He did not crawl out of bed until 11:30. Jimmie made everyone pancakes for breakfast, including Snoopy and Elvis. Elvis gets plate size pancakes that Carter feeds to him. For those of you who do not know Elvis and Snoopy, they are our dogs. Elvis is a BIG yellow lab that Carter claimed and Wyatt loves. Snoopy is Ali's Bassett Hound who is not so little either.
Wyatt had round three of chemotheraphy on Thursday, and he got both chemo drugs this week. They also gave him Zofran for nausea through his port. He did well. His appointments get so long. He loses patience, and so do we, waiting for the nurses to come and get us out of there. Better planning on their part would cut our time in half or more.
He was tired and sore on Thursday night and cuddled with dad and went to sleep early. He was only up twice during the night, and I am sure part of that was because he fell asleep before we could give him any pain meds.
Today he has been more energentic and is happy to have Ali and Bryce around to play with.
He still is refusing some of his meds. He spit the Zofran out at me faster than I gave it to him!! If we could get him to take them he probaly would be much happier.
Tomorrow he is spending the day with Grandma and Grandpa Rech. Bryce has his last tournament of the year. They placed 2nd in Faribault last Sunday. It gets to be much to long of a day for him now.
Well Mt. Rech, otherwise known as the laundry pile is calling.
Have a good weekend.
Kris
Wednesday, March 3, 2004 11:06 AM CST
Hi everyone.
Please take a minute and sign Wyatts guestbook, we would like EVERYONE to sign it. You will find a prompt to sign the guestbook located on this page. You will also see a link that I created to view more pictures of Wyatt from his two hospital stays at the bottom of the page. You may need to enter my email address of kmrech@hotmail.com to access them. If your operating system does not allow you to view them send us an email and we will forward them to you. It only takes a minute and we do not mind.
Wyatt was seen yesterday at Childrens by his Pediatric Surgeon, and had a good visit. His incisions from both surgeries are healing fine. Wyatt is the only BWS child that he has seen with cancer.
We however know of other children within our support group, Lena,and Lucas, who are dealing with cancer right now. Lucas also has Wilms Tumor. We have had no updates on his condition after being informed by his mom that they had induced him into an artificial coma because his kidney did not restart. Our thoughts are with both of their families and we anxiously await news on Lucas' condition from Germany.
We also stopped in to see the Onocology clinic to ask that Wyatt be given a different form of pain relief at bedtime because he has been waking up crying and wimpering during the night this last week. I do not think he was comfortable. He would be restless and just cry not knowing what he wanted sometimes for 45 minutes at a time. The Tylenol was not enough, and he refused to take the Tylenol 3 with codeine.
So we now have just codeine, which he took okay last night before bed.He slept through the night with no problems. I also appreciated the uninterupted sleep.
We also went to visit the fish in the Family Resource center, they have a lion fish that is huge.
He has proven what a smart little monkey he is, he knows that we are putting medications in his food and drinks. He tends to want to be in the kitchen when you are filling his glass. He absolutely hates the Vioxx and Tylenol 3. Trying to get either one of them in is a nightmare and short of putting him in a headlock, does not work.
He is currently sitting in front of the fireplace warming his "piggies" and watching Blues Clues. He has been in good spirits this morning and just finished dipping cookies in milk and making a BIG mess.
He will have Chemotheraphy in the morning after they get his blood test results back. They check his counts before they administer the Dactinomycin. He will be getting both Chemotheraphy drugs instead of just the one he got last week. He seems to be developing a pattern of feeling better and then having his chemo and then going backwards.
Our church in Kilkenny has asked to do a fundraiser breakfast for Wyatt on March 28. We appreciate their generosity, and that of others who have so kindly given to us these last 3 weeks. I will pass information as I get all the details.
It is snowing/sleeting out. I think I prefer the rain! Have a good day.
Kris
Monday, March 1, 2004 10:49 AM CST
Hi everyone.
It has been a nice, WARM weekend here in Minnesota. We were busy being basketball parents, as all three of the older kids played Friday, Saturday or Sunday.
Please be sure to sign Wyatts guestbook and check out his photos, I will be adding pictures from his first hospital stay today in Club photo. At the bottom of this page you will see a link to click to access them. You may need to enter my email, kmrech@hotmail.com to access them. If you can not find the photo album please email me we will be happy to forward them to you.
Wyatt is looking like that lovable boy we all know and love. He spent Friday night and Saturday with Grandma and Grandpa Rech so Mom and Dad could go to Justins game in Victoria, and Bryce and Ali's games on Saturday in St. Peter and LeCenter.
He is eating and drinking better, but at times still needs IV fluids. We have finished our course of IV antibiotics, and all his cultures look good from Thursday. He is still sleeping quite a bit more during the day. He has not slept this much since he was a baby.
He was outside yesterday enjoying the nice weather playing with Ali and Carter and the neighborhood kids.
His chemo treatments will be once a week on Thursdays. We will be going to St. Paul Childrens for them.
Enjoy the mud, the kids are!
Kris
Friday, February 27, 2004 5:00 AM CST
Good morning. Please be sure to sign the guestbook and look at Wyatts photos. You will also find a link to club photo which contains an album of his pictures from his second stay in the hospital. You may need to enter my email address to access the album, it is kmrech@hotmail.com, depending on the operating system you have. If you cannot access the album please email me and I can forward it to you.
I wanted to explain about Wyatts guestbook. The caringbridge page cannot be accessed by people just searching the internet. You must have the link forwarded to you or have Wyatts name to access the page.
You will see many entries in his guestbook from all over the world. A great majority of them are members of our Beckwith-Weidemann Syndrome support group that Wyatt and I are members of.
Beckwith-Weidemann is a syndrome that Wyatt has that affects 1 in 15,000 births. Wyatts genetist currently only sees two patients with this syndrome. It is rare. It also has put Wyatt at a higher risk to develop childhood cancers, and the screenings he was undergoing for BWS is how we found his Wilms Tumor. He was and will be screened by ultrasound every 3 months and have an AFP blood test done every 6 weeks which can predict liver cancer.
Wyatt had round 2 of his chemo Thursday. He has been very restless and whimpery overnight and is now cuddling with daddy in the recliner. He only had 1 drug this week, but the drug he had can cause muscle and joint pain. He also is running a low grade temperature.
We also noticed that after several days of taking his medicine better he is once again refusing. This may also be because the chemo causes things to taste differently.
Yesterday he had moments where he was himself again, getting into mischief, and playing with his siblings. What a difference 12 hours can make.
There has still been no word from Germany about how Lucas is doing, and the longer we hear nothing the more troubling it becomes for us. We hope our angels, Emilie and Randi are watching over him and Wyatt.
Off to sleep, Wyatt must be sleeping, daddy too, as it is very quiet in the family room.
Have a good weekend.
Kris
Wednesday, February 25, 2004 2:02 PM CST
Good afternoon. Please be sure to sign Wyatts guestbook and check out his photos. I added more pictures this evening by creating a link that you will find at the bottom of this page. Click the link and then you will be taken to clubphoto. Once there you will need to click my photos and then click on Wyatts adventure album.
I feel like I have been running in circles! Ha Ha.
Wyatt wants everything, but then eats and drinks nothing. Or very little.
He is in good spirits, laughing and playing monster with daddy before he has to leave for work. He just told Jim to put his shoes on for work after he gave him a goodbye kiss. This is the most energy he has had in a while. Last night he did play on the basketball floor at Justins game with Zach Baldwin and then later Abby Pumper took him to see all the girls that are in love with him.
He has his second round of chemo Thursday morning. They do not think that the chemo is responsible for his lack of energy and appetite right now. They will be running a series of tests at his appointment to check the status of the staff infection in his bladder and also blood cultures.
We are giving him IV fluids at night, and IV antibiotics twice a day. The antibiotics are easy because the medicine is in a "medicine ball" and does not require the pump. The fluids however need the pump or as we lovingly refer to it as the ball and chain. We run that in over a 10 hr period while he is sleeping. We have not had any problems other than constant beeping from the pump the first night. I thought Jim and I were going to kill each other, we were both so tired, before we finally figured it out. lol
We still have not heard from Germany about the Kruegers, and how their son Lucas is doing, but we keep him in our thoughts.
We are hoping for a good day Thursday.
Kris
Monday, February 23, 2004 3:43 PM CST
I would first like to thank everyone for all the wonderful guestbook entries, and all of the wonderful things that everyone has done for us since this detour began.
We are learning many new tricks to try and out smart Wyatt when it comes to getting him to take his medicine. He has learned that we are putting medicine in his fluids, and because he has not been drinking very well, we have had to stop even that.
Because of the difficulty in getting him to take his medications and keeping him hydrated we are going to be learning how to give him IV fluids and his antibiotics thru his port this evening.
Over the weekend we saw glimpses of the Old Wild Wyatt that we knew before the surgery, but he has been pretty quiet and taking long naps since we returned home from the hospital on Thursday.
He will have his second round of chemo on Thursday morning, along with a bunch of blood and urine cultures done to check on the status of the infections he has going on at the present.
We also would like to ask that everyone send positive thoughts for the Krueger family and their son, Lucas, who had to be induced into an artificial coma because his kidney did not restart after surgery last Tuesday. May our angels watch over him too as his family is dealing with this very difficult time.
11:30 p.m.
Well we must need a lucky penny, or some good luck charm.....a RN came this evening to show us how to give IV antibiotics and fluids to Wyatt. She had to access his port, but the materials that were sent from the home care agency were meant for an adult and not a 2 year old, so the access stuck way out and was not safe. Soooo...needless to say Wyatt and mom got to go on a road trip to Childrens in St. Paul as the hospital here in New Prague did not have the kid friendly access for the port either. After 25 minutes we were on our way. Sometimes life can be so complicated.
Wyatt does not like having anything done anymore, he will tell you to "get your hands off." He cried after we got home tonight when I was hooking up his IV even though there was nothing to hurt him. He is just sick of all of this already.
We are hoping for better days!
Kris
Friday, February 20, 2004 10:12 PM CST
Well it was rather quiet around here today. Wyatt was pretty happy to just watch TV and he took a nap which has not been an everyday event around here for a while.
Ali and Carter took him outside this afternoon and him and the neighborhood kids made a snowman in the front yard. It was nice to see him out having a good time.
We are trying to regroup and develop a system for administering all his medications. Jimmie had to be rather inventive to get him to take some of them before he left for work. We are also still in "sticker shock" I think.
Our whole family is blessed to have such great friends and neighbors to help us, we have had home cooked meals for the last two nights, and Bryce has been asking for the pan of lasagna that is waiting in the freezer. So thank you to everyone for everything they do no matter how small.
Thursday, February 19, 2004 11:26 PM CST
Wyatt is once again home .
He had his first dose of chemo today. He was given 2 different drugs. He will undergo chemo on a outpatient basis through Childrens St. Paul. He will only be hospitalized if he develops an infection or fever, etc... Both drugs are given as an injection through his port. Side effects are not that severe. He may have muscle and joint pain, lose hair, have nausea along with other side effects. He has many other medications that he must also take, two sheets worth in fact.
He spent the evening home with Carter and Grandma Rech while the rest of the family went to basketball practices and Justins game. Grandpa Villwock was here also while he was sleeping.
Most importantly we are trying to make sure that he is eating and drinking, and trying to get him to take his medications by mouth. He has not been very cooperative in this area the last two days. He is tired of all the meds and wants to be left alone.
We are glad he is home and are trying for everyones sake to make things as normal for everyone in the household.
If you see the other kids would you please try and ask how they are doing too instead of only Wyatt, we want them to know they matter too.
Thank you to all for everything they have done for us.
Wed. Feb 18, 2004
Wyatt had to be hospitalized last evening at around 10 p.m. due to a fever and dehydration. He is on the 4th floor in room 4206. He had an IV started by a wonderful ER nurse who was able to get it in on the first try, unlike his surgery that had over 10 attempts last Tuesday. She deserves a raise!!!
Wyatt underwent surgery this morning to have a port put into his chest for access to draw blood and to give medications along with his chemo. He also had an echo done to check his heart, and the hole that he has in the upper chambers.
He was restless after coming back from surgery but after having pain medication he is doing well and slept until nearly 7:00 p.m.
Plans are to start chemo tomorrow.
He also is being given antibiotics for a positive blood culture.
Tuesday. Feb 17, 2004
Wyatt does indeed have Wilms Tumor. He will have to have chemo after having a port put in his chest on Thursday morning. He will then begin his chemo that same day.
This was not what we wanted to hear. Although Wilms has a very high cure rate it is still cancer and he has always been such a happy, lovable boy.
Thank you to everyone for sending us positive thoughts.
Saturday, Feb 14, 2004
Happy Valentines Day!
Wyatt is home. After waiting all morning for the "sturgeon," also known as surgeons by many. We finally got the good news that we were going home. Ali visited with Wyatt this morning after coming back with mom and dad after they were able to sleep in their own beds while Grandma Rech stayed with the wild child overnight. Wyatt was very happy to see his big sister.
Aunt Susie visited again with Todd, and godfather Derek last night.
We are glad to be home and are awaiting his results Tuesday.
Friday, Feb 13, 2004
This morning we learned that we would not have the pathology results until Tuesday of next week because Dr. Pearlmann, who is to read them is on vacation. Waiting is not easy, and we are of course very upset about the delay. Wyatt is enjoying his rides in the wagon, and is eating and drinking clear liquids. Grandma Rech is here again and will be staying with him while mom and dad take a break to go watch Justin play basketball this evening. He is in great spirits, and we are hoping to escape from here tomorrow.
Thursday, Feb 12, 2004
Wyatt was moved to the 4th floor, Hematology and Onocology, room 4204 this morning bright and early at 6:30 am. He has been able to go for wagon rides and see the fish. He is not happy about having to get out of the wagon. He has had visitors, Carter, and Grandma and Grandpa Villwock were here to see him this afternoon and bring him a new tractor blanket. We are hoping to be able to start eating and drinking tomorrow.
Wed. Feb 11, 2004
Wyatt is still in the PICU. He had a difficult evening getting pain control. The tissue has been sent to Elizabeth Pearlmann at Childrens Hospital in Chicago to be read as the pathologist here has said it is to close to call. We should have the results by Friday. He is resting better today and is wanting only daddy. We are staying here in a PICU family room which is just down the hall.
Tuesday, Feb. 10. 2004
Wyatt underwent surgery this afternoon to have his tonsils, adnoids, and ear tubes reinserted. He also had a bronchial scope done to check his airway. This surgery was moved up a week to coinside with a partial nephrectomy to remove a mass on Wyatts right kidney that was found during an ultrasound, and confirmed with a CT on Tuesday, Feb 3rd.
The first part of the surgery went well once they were able to get an IV started. However they found another mass on the right kidney and also another one on the left that were not detected on the ultrasound or the CT scan. All three were removed and sent to pathology. Any affected portion of the kidney was also removed.
Wyatt is now in the PICU on the 3rd floor.
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