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Wednesday, June 9, 2010 6:53 PM CDT
Hi Friends! It has been so long. I had locked myself out of our caringbridge site and couldn't get logged back in. Finally got everything reset and up and running again!
Wow, time goes so fast. Canon will be going into 4th grade next year. He is a busy little man with baseball and summer activities. We have been spending time at the lake and working on getting Canon on water ski's.
Hope you all are doing well. We think of all of our wonderful friends we have met along this journey often. Canon will be heading back to NYC for his 6 month check-up scans again in August. Until then we will try to continue living a "normal" life--whatever that is...
God Bless! ~M
Thursday, March 12, 2009 4:01 AM CDT
Our hearts are truly broken. Ryan Vodicka, our dear, precious friend from Nebraska, earned his angel wings earlier today. We are crushed. He and Canon were the survivors! The greatest fighters in this battle. Ryan lost his battle. There are no words to express what we feel right now. This is not fair. I know God must have wanted him in heaven but I knOw that his family needed him more here on earth. Please pray for the Vodicka family that they can bear this horrible loss.
Miss
Thursday, February 12, 2009 2:05 AM CST
Okay, it is official...Dr. Modak called today and said the scan is clear!!! They can't explain what was showing on the MIBG but he said occasionally they do get a false positive. Thank you Jesus and all who have been holding Canon Ball in their hearts and prayers!! The power of prayer continues to work in our little man.
God Bless!! Love to all!! M
Friday, February 6, 2009 11:13 AM CST
This may seem hard to believe. It is hard for me to believe. I am STILL waiting on official results out of New York! I know the receptionist in Dr. Modak hates me because I call at least 4 times per day.
Here is what we know...Wichita read the CT. They did not identify anything on the scan. They are reading it as negative which is giving us a little relief at this time!! However, NY said that is encouraging, but they are sending it to be analyzed in detail along side with the MIBG. NY is looking for something very specific so we are not able to say for sure what the final outcome is until we get their word.
It has been a WEEK now since the CT. This is agonizing and completely nerve-wrecking. Please keep praying with us that NY will have good news TODAY!!
Love to all! God Bless! Missy
**Monday, February 9, 2009
I was going to be nice today and not pester Dr. Modak's office. I was just going to sit back and let them call me today. Well...that did not happen. No news. We are banking on the fact that NO NEWS is GOOD NEWS. I just wish they would confirm that for me. Tomorrow the onslaught of calls resume until I get an answer. Thank you guys for the forceful prayers and your patience! I honestly believe that storming heaven is saving us! YOU will be the first to know as soon as I have official word!
Love to all! God Bless! Missy
Thursday, January 29, 2009 9:47 AM CST
We need all the prayers we can get. Something highlighted on the MIBG scan from yesterday. We are going to have more scans to see what it is. We are praying forcefully that it is only a concentration of the nuclear medicine in his bladder! Will update when we know something.
God Bless, M
**UPDATE: Friday, January 30, 2009
Canon had his CT Scan today. The IV was traumatic like usual (5 sticks to find the vein). We do not have any results yet. The scans were overnighted to New York and (of course) Wichita did not get them read yet, so we will have to wait until Monday. I have received so many encouraging emails and I appreciate everyone of the prayers! Please keep them coming for our Canon Ball!!
God Bless!
**Monday, February 2, 2009
Waiting, waiting, waiting...We have a call into Dr. Rosen here in Wichita and a call to Dr. Modak in NY. Someone should have some results soon! This kind of waiting is so hard!! AAAAHH!
**Tuesday, February 3, 2009
Now this is just getting silly. NY could not locate the CD until this afternoon (was delivered to wrong department apparently). When I called this afternoon to see if it has been read they said Dr. Modak is in clinic still and has not had a chance to look at everything. I asked her to put a sticky note on his chair and have him call me tonight. Not sure if that will happen but good grief!! We might have to wait for the results until the morning. AAAAAAAAAAAAAAHHHHH!!!!!!!!!!
Monday, January 26, 2009 9:39 AM CST
Canon leaves for New York this morning for check up scans. We are a little overdue on them. He seems extremely healthy and crazy with energy. Can't keep a good man down!
Please keep Canon and all of our friends still fighting this battle in your prayers this week. Our Uncle Neal begins treatment this week in Washington DC for his cancer so we are full of prayers at this time.
God Bless! Thanks for stopping in!
M
Friday, January 2, 2009 10:59 PM CST
Wednesday, December 24, 2008 9:31 AM CST
MERRY CHRISTMAS!!!
We are all doing well. Canon is a ball of energy. He played football this fall and is now in the middle of his basketball season. So fun to watch! He still thinks he is a high schooler on the court, even though he is in the 2nd grade.
He turned 8 on November 17th and we celebrated the miracle of having him clean and healthy. It has been quite a milestone, but not one we take for granted.
Please remember those families this holiday season who are still in the battle. It is a long road for many. Please pray for the Miller family and the Vodicka family. Their links are below. They are special families who continue the fight.
Love to all! God Bless!! Malissa
Tuesday, August 26, 2008 12:37 AM CDT
God is good!! New news out of CHOP today. This is truly a miracle!:
PHILADELPHIA, Aug 25, 2008 /PRNewswire-USNewswire via COMTEX/ -- --May Lead to New Prevention and Treatment Strategies--
Scientists have discovered gene mutations that are the main cause of the inherited version of the childhood cancer neuroblastoma. In addition, the researchers found that the same mutations play a significant role in high-risk forms of non-inherited neuroblastoma, the more common form of the disease.
"This discovery enables us to offer the first genetic tests to families affected by the inherited form of this disease," said pediatric oncologist Yael P. Mosse, M.D., of The Children's Hospital of Philadelphia, the first author of the study, published online Aug. 24 in the journal Nature. "Furthermore, because there already are drugs in development that target the same gene in adult cancers, we can soon begin testing those drugs in children with neuroblastoma."
You can read the rest of the story at the following link:
CHOP Finds Neuroblastoma Gene
Friday, July 25, 2008 8:12 AM CDT
Great News!! Please read the following email:
From: Kate Shafer
Subject: THE BILL PASSED IN THE SENATE
To: "Kate Shafer"
Date: Wednesday, July 16, 2008, 7:04 PM
Dear Team Leaders,
The Senate of the United States works in strange and
wonderful ways. Late this
afternoon we were notified that Senator Jack Reed
planned to bring the Caroline
Pryce Walker Conquer Childhood Cancer Act to the
floor of the Senate to see if
it would pass by unanimous consent. I am so pleased
to let you know that there
were no objections.
The bill passed.
Tomorrow we will send out the official press release
but tonight I wanted to you
to know how grateful I am for the hard work you have
all done to make this
happen. This is historic and you should all be very
proud that you have had a
part in changing the world for children with cancer.
My very best,
Kate
Kate Shafer, LICSW
Director of Advocacy
CureSearch National Childhood Cancer
Foundation
4600 East West Highway, #600
Bethesda, MD 20814
(240) 235-2217 ((800) 458-6223 X2217
kate.shafer@curesearch.org
Thank you ALL for making the effort and helping with this cause!
Saturday, July 5, 2008 9:48 AM CDT
Hope you all had a wonderful JULY 4TH!!
I finally posted the pictures from Relay for Life and the quick video of Canon's survior lap. So funny! Thanks again to everyone who attended and sponsored Canon Ball. Next year I hope to make an even bigger impact on our fund-raising!
Canon is enjoying his summer. He continues to be extremely active and full of energy. He is my social butterfly. Everyone tells me they feel like they are talking to an adult in a child's body. Just try to argue with him!
Love to all! Thanks for stopping in!--M
Tuesday, May 27, 2008 8:46 PM CDT
CLEAR SO FAR!!! Dr. Modak's office called today and said everything except the bone marrows are in and it is clean! Whoo Hoo!!! This month is our 3 year anniversary of being OFF-TREATMENT. Feels good and scary all at the same time!!
Canon is walking in the SURVIVOR LAP of the Relay for Life on June 13th. Please, please sponsor him with any small amount that you can. It is very much worth it to these children! His link is below:
Canon's Relay for Life Page
Thank you all for the prayers. They have definitely worked in our Canon Ball! Love to all! God Bless!!--M
**UPDATE 6/17: Bone Marrows are clear too! God Bless!
Saturday, May 24, 2008 7:08 PM CDT
The boys made it HOME this morning!! They were supposed to get back late last night, but got stuck in Dallas with all of the tornados and mechanical issues. They actually had a wonderful time, with getting to see TWO Yankees games! What a treat for Canon Ball.
No news on scans. Canon did meet with the long-term care doctor again this trip. They were rushed on Friday because they didn't get his CT scan done in the morning so it got bumped to the afternoon and they had a 5:30 flight out of Laguardia. Therefore, no meeting with any of the NB docs before leaving. We will have to wait until Tuesday to check on any results.
No one mentioned anything of the MIBG from Thursday so I guess that is good news.
Thanks for checking in. I will post results as soon as we get any of them! Have a great holiday weekend!!
Love, M
Thursday, May 22, 2008 0:52 AM CDT
Canon and Trent made it safely to NYC, Thank God. Everything has gone well so far. It only took 4 pokes to find the vein today, so that was better than average for Canon Ball.
Tonight they had a very special treat. They got tickets in the box behind home plate at the Yankees game. I don't think there could be a better gift for Canon. Unfortunately, we couldn't get the game on TV here, so I couldn't see them. I was on the phone with him while he was watching the players warm up and he had to go because they were coming to take his food order. Livin' the dream...
Scans start tomorrow. Please pray for clean scans and no more IV troubles! Well, that last one might be too much to ask. Clean scans, that is our focus!!
Love to all! God Bless!--M
Friday, May 16, 2008 0:43 AM CDT
Canon heads to NYC next Tuesday for scan week. If God blesses us with clear scans this trip it will mark 3 years off treatment. Everyone knock on wood! Any and all prayers are appreciated, even a small one as we enter this scary period once again.
Actually, what am I talking about? We LIVE in a scary period every day of our lives. I read daily of people we know, some very well, that are losing this battle. I think about it all the time, how unfair this disease is. It is not fair to be 7 years old and know so many friends who have passed. No one should experience death so young and be so familiar with it. It is ridiculous! To see these children and their families go through this is torture.
We are so very, very thankful for the strides Canon Ball has made. He has been a true blessing. I always ask God why Canon has come through the way he has, and why some have not reacted as well. There is story after story of children Canon's age at diagnosis, that are almost identical in stage, treatment, hospitals...and still do not have a good outcome. I know their parents have just as much faith in God as we do, but are not as fortunate as we have been. I don't understand it. It is something I think about every single day.
Well, it is almost 1am and here I am being a downer. I AM very happy that you are checking in and continue to support our family with your thoughts and prayers. We have been truly blessed and ask that you also say a prayer for those friends that are in the middle of this battle.
Love to all! God Bless!--M
Monday, May 12, 2008 10:47 PM CDT
BEFORE I WAS A MOM
Before I was a Mom,
I never tripped over toys
or forgot words to a lullaby.
I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.
Before I was a Mom,
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind
and my thoughts.
I slept all night.
Before I was a Mom,
I never held down a screaming child
so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night
watching my baby sleep.
Before I was a Mom,
I never held a sleeping baby just because
I didn't want to put him down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
Before I was a Mom,
I didn't know the feeling of
having my heart outside my body.
I didn't know how special it could feel
to feed a hungry baby.
I didn't know that bond
between a mother and her child.
I didn't know that something so small
could make me feel so important and happy.
Before I was a Mom,
I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.
I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment
or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much,
before I was a Mom.
I know it is late, but Happy Mother's Day to all of the Warrior Mom's in this battle. You are truly heros!
Sunday, March 23, 2008 9:17 AM CDT
HAPPY EASTER!!!
Holidays seem to be the best time for updates. We are extremely blessed by Canon's continued good health and ENERGY! He is playing soccer AND flag football this season. We are always running to practice or a game of some sort. He has been coaching his big brother like a bulldog on the correct techniques of push-ups. He is a TANK--unstoppable!
Canon and 3 other friends dressed up as the Village People for their 1st grade talent show and did the YMCA. If I can figure out how to upload a video I will add it to the site. It was so funny!!
Thank you all for checking in. Love to all and God Bless!
Malissa
Tuesday, February 12, 2008 11:54 PM CST
Happy Valentine's Day to all you lovers out there! ha
We are doing great. I am sorry of the delay in updating. As you know, no news is the best kind of news, so we will take a dull, normal life any day!!
Canon is wrapping up his basketball season. He was quite the stud on the team this year. Always the bossy point guard. I am convinced that having to fight so hard for those years in the hospital has made him an assertive person in life. Always having to be in control of every situation -- AT AGE 7! Ask anyone, it is more like 37.
We are thankful to everyone out there who continues to support our family. We could not have done it without you all! Please continue prayers for those friends who are forced to fight this battle every day. We ask God to shower them with his healing love.
God Bless!--M
Saturday, December 22, 2007 10:27 AM CST
CT and MIBG scans have come back clean! Bone marrows will be in next week. Definitely a good start and we are all breathing a small sigh of relief. The 6 month span between scans was a little scarier than I thought it would be. While, it is nice to stay home longer, not having that quarterly reassurance is a little tough.
Canon and Trent are supposed to fly in tonight. We are having a huge snow storm right now, so I am not sure if their flight will be delayed or not. Please pray for a safe return!
Thank you for all of the prayers and support. Canon truly is a miracle. We continue to lift up all of our friends that continue this fight. Many Canon was able to spend time with at Ronald McDonald House this week.
MERRY CHRISTMAS!! GOD BLESS! Love, M
PS: Ski trip was SO much fun. No news on bone marrow results yet. We will call tomorrow but are assuming no news is good news!
Sunday, December 16, 2007 0:29 AM CST
Hello Friends and Merry Christmas!!!
We are moving right along into the holiday season. Yes, it is SCAN WEEK next week. Ick... Hard to believe it has been 6 months! Anyway, we have faith that everything will go well. Canon is a barrel of energy. He had another basketball game today and was a usual ball hog. His 1st grade team is almost exciting to watch as KU.
Trent and Canon will be off to NYC on the 18th. We have a few inches of snow here in Wichita so I am hoping that it warms up before they have to take off. I hate winter travel!!
We are looking forward to our ski trip when they get back. This will be our first trip back to the slopes since Canon was diagnosed in 2004. Hope I can remember how to ski. The kids will probably show me up!
Please add Canon in your prayers for clean scans. He is a blessing to everyone around him. A true miracle! Your prayers have carried us this far.
Love to all!--M
PS: Canon's teacher had a terrible fall and broke her back the day before Thanksgiving. She has been home knitting a prayer blanket for Canon. Mrs. Primm is such a special lady and Canon has a wonderful bond with her. Please add her to your prayers, that she makes a full and speedy recovery. Canon misses her very much!
Thursday, October 4, 2007 10:19 PM CDT
Canon was quite a hit at the football game the other night. Take a look at this video...
Saturday, September 15, 2007 4:26 AM CDT
Please help support this fund! These are brave families in the fight of their lives, working to raise money to fight neuroblastoma. Please pray for safe travel and a successful campaign!
Love to all!--M
Tuesday, August 14, 2007 8:53 PM CDT
Please take time to visit the following website:
www.loneliestroad.org
This is a very important campaign to raise money and awareness for Neuroblastoma. Currently NO federal dollars go to fund Neuroblastoma research. NONE! ZERO! NADA!!!
It is important to promote the importance of Neuroblastoma research. Look how much federal research money has gone to Breast Cancer and Leukemia. These two cancers have a extremely greater cure rate than Neuroblastoma, which has one of the lowest cure rate among all cancers.
Please consider donating to this cause, or at least praying for this cause, that the horrible cure rate for Neuroblastoma is realized and addressed sometime in the very very near future. Anything you can do to help is one step forward!
Love to all! God Bless!--M
Saturday, August 11, 2007 4:48 PM CDT
I can't believe it is time to think about school again! Seems like I just posted those "First Day of School" pics from last year!
Football practice has started for Caleb, and Canon has resumed his role as water boy in full uniform. We had to buy Caleb new football pants this year with the pads built in and, of course, Canon had to get his too--even though he will never see any playing time on the 5th grade team! He always has to look the part.
Caydie has just turned 8 and Caleb will be 11 this month. I sometimes think, where did these three kids come from? They are a crazy bunch, but so much fun. We are truly blessed. Canon is the power house of the family and a crack up to be around every day. God Bless. Love to all!--M
Monday, July 30, 2007 7:39 PM CDT
Guess who we saw this weekend? THE YANKEES!!! We took a family vacation to Kansas City this weekend and got to see the Yankees play the Royals. It was so much fun. Canon was impressing the fans around us with his Yankees trivia knowledge.
We had a fun time at World of Fun and Oceans of Fun--enough to last for another 10 years or so, and got to eat at the T-Rex restaurant at Legends. Good times. Fun summer.
The school packets came this week. We are getting geared up for the school year again. Crazy how fast time flies. We have scheduled a long-term study appointment for Canon at MSKCC in December, along with his 6 months scans and are thankful for the "long" break from NYC.
Love and prayers for all of our friends still in battle against this disease. Remember them in your prayers. Miracles are happening every day. God Bless!--M
Thursday, July 5, 2007 11:42 PM CDT
Happy post-4th of July! We are still waiting on the final results of the bone marrows, but are hoping no news is good news!
As you can see, Trent and Canon made it to the Yankees game (many thanks to my buddy, Cosmo, who works in NYC and does tech support on our office software)! They had the best time ever. Clean scans and a Yankees game...how do you top that?
Please continue the prayers for our good friends, Ryan and Jake, who are still in the heat of the battle. We know that miracles happen, as Canon Ball shows us every day!
Love to all! God Bless!--M
Friday, June 29, 2007 11:30 AM CDT
Praise God! Scans are looking good. Dr. Modak told Trent that it looks like we will be able to switch to 6 month scans, YEA!!!
Of course, bone marrows will take a little longer, but so far so good. Whoo hoo!
Thank you for the extra prayers! Trent and Canon are going to kick back and enjoy the weekend in NYC. We are still looking for some Yankee tickets, in case anyone has a lead!!
Love to all!--Miss
Thursday, June 28, 2007 9:34 AM CDT
Trent and Canon arrived in NYC late last night. They were delayed in Wichita and delayed in Denver, and arrived 6 hours later than we planned.
I have not heard from them since last night. This morning Canon was on the books for CT at 8am. Considering it took him 2 hours to find a vein for IV last visit, I am wondering how it is going. Hopefully all went smooth and they got it on the first try.
He will have his MIBG injection today at 2pm and then they will do the MIBG scan in the morning at 9am. He will also have bone marrows extracted tomorrow afternoon.
Thank you for checking in on us. Please pray with us for continued clean scans. Canon celebrated two years off-treatment last month and we are so thankful for the prayers and support that has brought us this far.
Love, love, love to all!--Miss
PS: Mimi, Canon's great grandma, past yesterday morning. She was a strong woman and our family will miss her so much.
**Evening Update: Canon got through the CT scan and MIBG injection. They did give it 3 or 4 tries before hitting the vein and he put up a little fight for the CT contrast injection, but other than that he is cruising right along!
Sunday, June 17, 2007 11:51 PM CDT
Well, the wedding was great! Canon Ball was very handsome in his tux and did his job very well. Besides using the ring pillow to wipe the sweat off his brow, he was flawless!
The family has all dispersed now. We actually had our first weekend with nothing to do. WOW! We had a nice Father's Day today, going out to lunch and taking the kids swimming.
Canon and Trent will be traveling to NYC on the 25th. SCAN WEEK! Yikes! Any extra prayers are always appreciated! :)
We have a couple of extra prayer requests this evening. Mimi, Canon's great grandma is very ill. She has been battling cervical cancer and has fought a hard fight. She is a tremendously strong woman from Maine, and we pray that she does not have any more pain and that God wraps her in His loving arms with grace and peace.
Also, we have a little friend from Kansas that is in a new battle with neuroblastoma. He has been fighting for about a year, but they recently found a new tumor. They are moving their treatments to Sloan-Kettering. Please pray that Sloan will be able to provide them with right steps to conquer this beast. These children are true warriors! His website is www.caringbridge.org/visit/lane
Happy Father's Day! Love to all! God Bless!--M
Monday, May 28, 2007 7:51 PM CDT
Happy Memorial Day! Hope you all are doing well and taking time to remember those we have lost. God Bless!
We have decided to stay home until after the wedding June 9th (Uncle Seth's big extravaganza!). Canon and Trent will go to NYC the next week for scans. Canon has just past his 2 year anniversary of off-treatment. If these scans come back clear we will be able to cut our NYC trips back to every 6 months. Praying, praying, praying...
Thank you for looking in on us. We love you all and continue to pray for all of our friends who are still in this battle. Love to all!--M
Sunday, May 13, 2007 8:17 PM CDT
**Update Friday, May 18th: Brad Friesen, husband of a classmate of mine, passed yesterday. He had a long fight and he kept his humor even to the end. He is survived by Tiffany and their three little girls. Please pray for this sweet family. www.caringbridge.org/visit/bradfriesen
ROCK CHALK JAYHAWK!!! We went to KU this weekend for a special ceremony honoring Canon's Great Grandpa, "Deaner" Nesmith. It was wonderful to talk to those who knew Deaner and it was fun for the kids to learn about him. We took in a baseball game and had a chance to visit Aunt Britt and Uncle Mike's new house. Canon packed his construction gear for the trip!
Canon is looking forward to baseball that starts next week. He will be in his Uncle Seth's wedding the first week of June, and we have to fit a trip to NYC in somewhere!! It is getting crazy.
Please continue to pray for Ryan and for Brad, and for all of the warriors to continue in this fight. Thank you for stopping in.
HAPPY MOTHER'S DAY!!!!!!!!!!!! God Bless!--M
Saturday, May 5, 2007 10:08 PM CDT
So far Wichita has dodged the tornadoes that continue to come. Greensburg, KS was destroyed last night and looks like they are getting another round tonight. All of our broadcast channels are non-stop weather tracking. It is a terribly sad situation. I can't help think of all of the times I went to Greensburg with my grandma to see the "World's Deepest Well". I can't believe the devastation there.
Hope that you all are doing well. Canon's NYC trip will be coming the end of this month. I will update as soon as it is scheduled.
Please continue to pray for our dear friend, Ryan Vodicka, Jake Miller from Georgia, and the family of Brad Friesen. All continue this battle and we continue to pray for those miracles!!
Love to all! God Bless!!--M
Friday, April 27, 2007 8:48 PM CDT
Hi guys! I'm the worst updater ever, I know.
Canon continues to do awesome. He is the ball boy for Collegiate's High School team, and is taking his job extremely seriously! He dresses in full uniform, including batting gloves (not that he will be called into the line up), stirrup socks, and cleats. He picked out a new batting helmet at the beginning of the season that he wears every game. He is the funniest thing ever getting out of the car with this little body and big helmet, running to the dugout.
He is also playing soccer on Saturday's so we basically follow his sports schedule weekly. So many social events, so little time...
We will be returning to NYC in June. We have to work it around Uncle Sethie's wedding--YEA!!
Please continue to hold the Vodicka's and the Friesen's in your prayers. Every one of them helps--Canon is proof that they work. Love to all! God Bless!!--M
Thursday, April 5, 2007 7:25 PM CDT
What crazy weather we are having here in Kansas. Two days ago the kids were wearing tank tops and flip flops. Today, it is slightly below zero with snow.
We have some special friends in need of prayers. Ryan from Nebraska is fighting a battle with this disease. Please add him to your prayer list. He is such a great guy with a special family.
I just found out that a friend of mine from high school has a husband on the same journey. They have 3 little children, and I can't imagine what they are going through. Please say an extra prayer for this family as well. Their caringbridge site is:
www.caringbridge.org/visit/bradfriesen
Happy Easter to everyone! Thank you for stopping by and thank you for all of your support!! God Bless!--M
Saturday, March 3, 2007 10:37 AM CST
Dr. Modak called yesterday afternoon and reported that MIBG and CT Scans are CLEAN!! Bone marrows will be in next week sometime, but so far so good.
Whoosh...looks like all the fight is going to be worth it. I'm going to have to start working out before our next round of scans in May just to keep up with Canon!!
Thank you all for your prayers! God is good! Love, Miss
Wednesday, February 28, 2007 2:01 PM CST
Next time we come here I am packing the straight jacket!!! I tell ya, remember those nice little updates I used to give about how Canon just goes with the flow and doesn't really question anything?? Well those are out the window.
Seriously, the older he gets the stronger he is--both physically and with his opinions. In some ways you think "Who can blame him after everything he has gone through?" and in other ways you just want to wring his neck!
Yesterday was the first day--in three years of doing this--that I broke down in front of the whole CT staff. I had hit my frustration level and couldn't control my tears. It was silly and very embarrassing, but they were very nice about it.
Canon had fought all morning about the IV line. He has always had really bad veins and has had a difficult time getting IV's in--even since he was 3-yrs old. However, the older he gets, the more he knows what is coming and can put up quite a struggle. The more he struggles the harder it is to get the line in. Which of course means more pokes.
After about 5 pokes, and 4 nurses holding him down, we finally got the line in. By that time we were running way late to CT. We hurried up--guarding the IV line with my life so not to move his hand one way or another--drank the contrast and got to CT. Since we had missed our original time we had to sit an hour and wait for the next available slot. I can't tell you how fun it is to sit with a restless 6-yr old in a swamped waiting room with a bunch of older patients for over an hour.
Once we got into CT he refused to let the nurse check his IV line. I assured her that we just got it in and that it was working fine, but at first sight of the saline flush, Canon wigged out. He didn't want anything to do with that going into his line. He has always had spidery veins that sting a little when injected, but you would have thought they were taking his hand off the way he acted.
We proceeded without flushing the line and just hooked him up the to the bag, which he was fine with since it was not pushing. We did the head and orbits CT without trouble, but on the second pass of the abdominal CT the nurse came in to inject the dye. That is when it all broke loose. It finally came down to just cancelling the abdominal CT. I was informed that I would have to reschedule for Thursday--the time we will be on a flight home. That was the last straw for me and I didn't contain my frustration very well.
Anyhoo...later that day I was able to convince Canon to let them inject for MIBG. That was a big feat, considering 2 hours earlier he was on the brink of pulling his IV out of his hand at the sight of flush. It still required 2 nurses, but we got it done.
That glass of wine I had with dinner last night was the best EVER!
Today has been relatively uneventful. We had some tears at finger prick today for CBC counts. Nothing major. He laid completely still for MIBG scan, except for the last 3 minutes of the 45 minute scan. I had to count it down second by second so that he would lay still.
They got us on the schedule for CT again at 5:30pm tonight, and Canon has promised to allow them to inject the dye. I have been sitting here in the waiting room praying that we get through CT Scan without incident. To look at him now, you would never know what kind of a crazy patient he can be! He is tagging along with his favorite nurses, riding the IV poles like scooters, and being his normal social self in the PDH. 2 1/2 more hours and we will be finished with this trip (I hope!!).
Thanks for checking in on the drama. Hopefully all of this hard work with pay off with clean scans! It will all be worth it to hear good news!!!
Love to all! God Bless!--M
Wednesday, February 21, 2007 11:51 AM CST
WELL, WE WILL BE OFF FOR SCANS ON MONDAY. Canon and I will be heading east to NYC this coming Monday and return Thursday, March 1st. We are getting close to the 2-year off treatment anniversary, so every time gets a little scary. We continue to be so thankful for Canon's continued good health. Now if I could just work on the attitude--ha!
Basketball season just ended for Canon Ball. He loved it. We had trouble with the "ball hog" issues of course, but he was fun to watch and his team really started clicking the second half of the season. Soccer will be starting this Spring.
We are finally out of our deep freeze here in Kansas. We are all ready for warmer weather!!!
Love to all! Thank you for your continued prayers and support! Love, M
**Last night Canon and I were watching Top Design on Bravo. Trent said next week you will be watching this in the Ronald McDonald House. I said "Hopefully our room will have cable. Remember last time we had to watch Project Runway in Robin's room?" and Canon got real quiet for a minute. I'm sure it just hit him that this will be the first trip to NYC that we won't be able to run find Robin. It is so sad for a 6-year old to experience so much loss at this early age. We just pray everyday that our friends pull through this journey that we are all on. God Bless.
Tuesday, February 6, 2007 6:25 PM CST
Hi Friends!
Everyone needs to read the story at the following link:
http://www.cnn.com/2007/HEALTH/02/06/skin.warning.reut/index.html
I was just scanning the news today and found this story about numbing creams. The reason it alerted me was because a number of times the nurses at Sloan and other clinics use numbing creams before injection or IV. I wanted to tell everyone about this story because this can be very dangerous--especially for small children.
I never had Canon use these creams because the anticipation of the shot was much worse than the "pain" of the shot for him. Putting numbing cream on just made the planning worse! I would advise any parent who allows this to happen to stop!! The pain is more mental for the child and it is not worth risking it!
There, that is my public service for the day!
Love to all! God Bless!--M
Tuesday, January 30, 2007 6:11 PM CST
Hi Friends! We are doing great. Canon will be going back to NYC the third week of February for another round of scans.
Hope all is well. God Bless!--M
Wednesday, January 17, 2007 12:25 AM CST
We had some terrible news this week about a dear friend in New York who past. Robin was a beautiful girl who had been at the Ronald McDonald House for a while. She was so sweet and calm. She babysat Canon on occasion and when we checked into RMH, she was the first room he ran to.
Even as he was jumping all around her room, she was always calm and loving. She would go to the kitchen and get him ice cream any time he asked (or her wonderful mom would make him mac & cheese at the drop of a hat). Last time I took the kids up to NYC we all sat in the dining room together and played Crazy 8's. This is an awful loss.
Robin's full name was Shavanah Carrly. Here memorial is tomorrow in Brooklyn, NY. Please keep this precious family in your prayers.
WE LOVE YOU ROBIN!!
Update: Canon's MIBG was read in NYC and is clear. Our next round of scans will take place the 3rd week of February. Thank you for the prayers. They have been so powerful in the life of our Canon Ball.
Thursday, January 4, 2007 7:30 PM CST
HAPPY NEW YEAR!!!!!!!
No news yet on the MIBG. Apparently we move at a snail's pace here in Kansas. Waiting to hear where we are on things, as the doctor has not yet called. I am hoping that no news is good news.
Anyhow, we had such a wonderful Christmas. We had a nice Christmas Eve at Grandma Ginny and Pa's house. On Christmas Day we all flew to Nana and Grandpa Jack's house in Mead, WA. We lucked out and went right through Denver without delay. What a beautiful part of the country!
Canon and Cayden were baptized on Christmas Eve. It was very sweet and they did very well. I can't believe we waited so long, but it is nice to have all of our bases covered now! :)
I promise to update as soon as I know about the MIBG. I am not holding out much hope of getting an answer this week but I'M ON IT! Thanks for checking in!
Love to all! Prayers for a Healthy and Happy 2007!!!!--M
Friday, December 22, 2006 9:33 PM CST
Well, we finally were able to get the MIBG scan done. It was a tramatic day for Canon Ball on Wednesday, as they had a terrible time finding a vein for injection. YIKES! After about 6 or 7 sticks (I lost count), 5 nurses, and a spirting blood episode (yeah, that was fun...not), we finally got the injection done after 2 1/2 hours. Whew! That was absolutely the worst ever!
Anyhoo...Canon survived to scan another day, and we were back at the hospital for MIBG the next morning. Everything seemed to go well, but of course, we do not have results. I was praying during the entire scan, so we are putting our faith in God that the results will come in good.
MERRY MERRY CHRISTMAS TO EVERYONE!!! Thank you for taking time out of your busy schedules to stop by. We appreciate every single prayer we get. God is good. Love to all!--M
Sunday, December 17, 2006 9:33 PM CST
How fast time is going! Christmas is almost here! Still no schedule yet for the MIBG, Kansas-style. The last time I talked to Nuclear Medicine at Wesley they were like "Let's see, we haven't done one of those in so long..." Hmmm, now that's comforting! Anyway, we are going to get on the schedule as soon as the radio-active isotopes are available. Apparently they are not available daily, like in NY.
Canon is eager for Christmas. We will be getting Canon baptized on December 24th, with is sister, Caydie. I don't know why, but the two younger ones have missed out on that experience so we are excited to have that done Christmas Eve. We are also going to be made official members of Chapel Hill Fellowship here in Wichita, which will be very special to all of us.
Thank you for your continued support for us and the other families going through this journey. We are truly blessed to have you! Love, Malissa
Sunday, December 3, 2006 0:28 AM CST
Clear so far! Yes, Dr. Modak called late Friday to say that the CT, urine, and bone marrow aspirates are clear. Thank you God!!!
We are still needing to get the MIBG done so we are working with the local oncologist to get this scheduled in Wichita.
Canon and Trent flew in late Friday afternoon and we rushed home to get Trent changed for the basketball game at Collegiate (he had his athletic director duties). We hurried around and got him there and then the kids and I went back out to the airport to track down the lost luggage. Luckily, it had come in on a later flight and was there when we got there.
The Power of Prayer is working in our Canon Ball. We continue to pray for a clear MIBG. Thank you for your continued support. Love to all!--M
Thursday, November 30, 2006 7:52 PM CST
The Boys are stuck in Atlanta. Seems like everything about this trip has been a mess! All that way for a CT scan and a EKG. Now they can't get home due to the snow storm here in Kansas.
Oh well, we have much to be thankful for and we are looking forward to having them home. We should have the test results soon. We are working on getting the MIBG scan set up here in Wichita, which would be nice.
Love to all! God Bless!--M
Tuesday, November 28, 2006 9:47 PM CST
Well, the MIBG is nixed. No injection available until NEXT WEEK. Yeah...that won't work at all. We are exploring the possibility of doing the MIBG in Kansas.
The boys are making the best of it though. They are stuck in NYC until Thursday with nothing to do except enjoy the Big City. Tonight Canon and Trent went to the NY Rangers hockey game. They were able to sit in the VIP box and the goalie gave Canon a official game puck. He thought that was about the coolest thing that could ever happen.
Thanks for checking in. The holidays are upon us! Love and Blessings to all! Remember the reason for the season!--M
Monday, November 27, 2006 9:58 AM CST
I just spoke with Trent and Canon's IV went smooth today--for a change! They have completed the CT Scan and are waiting on Bone Marrow. All is well so far, but of course we do not have any results yet.
We had a WONDERFUL weekend in Nebraska with the Vodicka's. What a crazy bunch! We shopped til we dropped and ate way too much. Canon and Trent flew out from Omaha early Saturday morning, which left Caleb, Cayden, and I to drive home. We watched High School Musical twice on the way home, so you can't beat that.
Thank you so much for the continued support and prayers. I will update with any info that I get.
God Bless, M
Saturday, November 25, 2006 7:49 PM CST
After a cancelled flight and re-routing airlines, Canon and Trent finally arrived in NYC safe and sound. They will start scans 8:20am Monday morning.
Praying and Believing in God's healing power! Love, M
Friday, November 17, 2006 10:12 PM CST
HAPPY BIRTHDAY CANON BALL!!!
Canon had such a great birthday today, with a wonderful Thanksgiving program at school (the video is hilarious--he's such a ham!). He received a new Nintendo DS and PJ's from mom and dad. Tonight we ate at his favorite restaurant, Kobe Japanese Steakhouse. He missed the shrimp during the shrimp toss, but a good time was had by all.
Thanks so much for checking in and please remember to concentrate prayers on clean scans for Canon in the next couple weeks. Trent and Canon will be leaving for NYC the weekend after Thanksgiving.
God Bless! Love to all!--M
Monday, November 13, 2006 10:14 PM CST
Canon's scans are scheduled for the week after Thanksgiving. Please, please pray for clear results and safe travel. Many of our friends are having trouble with relapse and scan week is very scary. We believe in God's healing and thank Him everyday for the blessings He has given us. Also pray for our buddies who continue to fight, so that they too may get clear. It is truly a horrible disease. Please keep Big Ryan, Miss Sydney, and Jake Miller lifted up this week.
On a happier note...CANON TURNS 6 ON FRIDAY!! 6!!! WHOO HOO! It is amazing to think about how far we have come in the past 2 1/2 years. Thank you, God!
Thank you so much for stopping by the check on Canon Ball. Your prayers and support are so appreciated! We love you!--M
Friday, November 3, 2006 2:21 PM CST
Our dear friend, Lana Beth, earned her angel wings today. We are tremendously sad, as we will miss her. Our hearts break for Cindy, Jim, Alan, and Cole. Please pray for this wonderful family. Remember, it is only the living that are far from home! :)
We love you, Lana Beth!!!
Lana in the middle with the Gang
Cole and Canon
Tuesday, October 31, 2006 8:23 PM CST
WOW! We have never lived in town on Halloween before. The kids had a great time Tricking and Treating tonight. Canon was nice and put his football pants on loan to his friend, Dalton. So, he was a Yankees baseball player for the night.
November is going to be a big month for Canon Ball. His 6th birthday is on November 17th. 6!!! What is up with that???
We are due for another round of scans the second week of November. Anxiety is setting in again, as always, but we continue to keep our faith in God that all will be fine.
We have some friends that are struggling. Please, please, please pray extra hard for Lana Beth. Our hearts are breaking. Lana is the hippest chic we know and she is going to be one cool angel in heaven! Lana Beth, Cindy, Jim, Alan, and Cole, WE LOVE YOU!!!
Canon and Caydie with Lana Beth and Sydney at Universal in January
Alan and Cole, 2 Wild and Crazy Guys
This family is very special to us. Please pray for their peace and comfort.
Love, M
Wednesday, October 11, 2006 10:26 PM CDT
Just an update to let you know we are doing very well. Canon has had a little trouble keeping his name on green (they use the Green>Yellow>Red behavior scale in class). Last week he had a running bet with our next door neighbor who could stay on green the longest. Yes, friends, Canon had to pay up a $1 on the second day. Well, that's Canon Ball for you.
We were sad to see the story about the Yankees pitcher and his plane crash. Life is short, as we all know. Love one another and be thankful for every day you have on this earth. It is truly a gift from God.
God Bless! Love to all!--M
PS: Our friends still need special prayers: Jake, Sydney, Lana Beth, Ryan, and so many.
Thursday, September 28, 2006 8:26 PM CDT
Well, folks. Canon has evolved. Yes, I knew this day was coming, but he is now officially an "ESPN GUY." Last week it was just Canon and I at home before school and I turned the TV on to Disney Channel--like every morning--for Canon to watch while I finish getting ready. I walked back through the room and realized he did not have Doodle Bops on. He was watching FOOTBALL HIGHLIGHTS! He has been obsessed with ESPN ever since.
Now I have 2 men to fight with for the remote. AARRGGHH!
Well, I can still get Caydie and Caleb to watch Project Runway with me!
We are having a super busy Fall. Canon is in swim club and LOVES it. He is such a little fish--and of course NO FEAR! One good thing about his sinus radiation--he can't get water up his nose--ever. He is the ideal swimmer.
Please keep those prayers coming for our buddies fighting hard (Ryan, Joey, Lana Beth, Sydney...) Love to all!--M
Tuesday, September 19, 2006 10:38 PM CDT
I was almost too sad to post today, but I wanted to mention a new angel that fought a hard battle against this demon we know as neuroblastoma. I have followed Christi for a long time. We never met her personally, but we have friends in common. She went through the horrible 3F8 at Memorial Sloan-Kettering, like Canon did. She was so beautiful and so smart. I just keep thinking, wouldn't God have wanted her to stay on this earth longer to do something wonderful? I'm sure she would have.
Christi Thomas: http://www.christithomas.blogspot.com/
God Bless
Malissa
Wednesday, September 13, 2006 11:50 PM CDT
HE'S BACK!!!
Wow, what at treat! Lambeau Field on the home opener. Even if they did get their tails beat, Canon had the time of his life. He cleaned out the gift shops with anything that had a Packers logo on it.
I dropped him off at school today wearing his cheesehead. I'm sure Mrs. Drew appreciated that!
It is so good to have him home again--and so much louder! You don't realize how quiet the house is until he come barreling through the door. Thanks again Aunt Britt and Uncle Mike!! Thanks Uncle Seth for driving him home. What a "boy's" weekend they had! God is good.
Love to all!--M
PS: Many extra prayers are needed tonight. Lana Beth (ga/lbw), Sydney (fl/sydneysims), and Joey Thompson (visit/joeythompson) who is just getting ready to leave for Sloan-Kettering to start antibodies. Of course, our other buddies all need special prayers as well. Please just include all of our friends in an extra prayer this evening!! Thank you.
Monday, September 11, 2006 9:32 PM CDT
I just had to write a quick note about today's date. I have had a heavy heart all day thinking about the 9/11 attacks. I can't help think about how much has taken place in the past 5 years. It is strange how it seems like yesterday and like so long ago, all at the same time.
Also, my mind keeps thinking about how the terror attacks are so much like cancer. You are just cruising along one day, minding your own business, living the "normal" life, when out of no where you get sucker punched (as Toby Keith says). Both were HORRIBLE experiences, and both change your life forever. All you can do is pray that God pulls you through, and don't focus on the "why?".
By the way, Canon is on his way home from Green Bay right now. They had a WONDERFUL time at the Packers game (even though Chicago beat them up pretty bad!) I hear Canon was harrassing every Bears fan he ran into. So true to form! Gotta love him.
God Bless!! Don't forget to love one another. Love to all!--M
Friday, September 8, 2006 9:21 AM CDT
Well, Canon Ball is off to Green Bay!! Aunt Britt and Uncle Mike loaded up the F250 and off they went last night. He is sooooo excited! HOME OPENER AT LAMBEAU FIELD!! Is that crazy or what?
Canon has had his suitcase packed for a week. He had all of his Favre jerseys, his football helmet, football pants, cleats, and cheese-head...ready to go! I got him buckled in and he was set. I even had to remind him to give me a hug good-bye. So much for sappy send-offs...Who worries about kisses from Mom when you have the Packers waiting, right?
I sent my camera with him, so hopefully he will bring back some good shots. My baby is on vacation for five days! YIKES! I'm sure it will be much harder on me than on him!
Thanks Britt and Mike for a wonderful gift!!! Thank you all for caring about us. Thanks for the prayers and support! Love to all!--M
Wednesday, August 30, 2006 11:32 PM CDT
What a great start to our school year! Clean scans, nice weather, 3 excited kids...We thank God every day for our blessings.
Canon is ready to start the Big K this year. He has the same teacher who had Caleb and Cayden. I don't think she knows what she is in for, however. So far so good. One day down and no trips to the principal. Whoo Hoo!
Thank you for checking on us. Keep our buddies in your prayers as well.
Love to all!--M
Monday, August 21, 2006 10:13 AM CDT
ALL CLEAR!!!
All the scans came back great! Thank you, thank you for all of the prayers and support. God is good.
Please continue to pray for all of our friends that are still working to get clear. We have quite a list. Big Ryan from Nebraska, Lana Beth from Georgia, Sydney from Florida...Jake from Georgia is doing good. Please keep all of our buddies in your thoughts and prayers!
Love to all. God Bless!--Malissa
Thursday, August 17, 2006 6:15 PM CDT
Picture this...
3 kids (ages 9, 7, & 5), one stressed out mother, and a terminal full of irritated travelers sitting in the Wichita, KS (that's WICHITA) airport for 6 HOURS! Yes, I know it is almost too frightening to think about. But, that my friends, was how this week started for us. Seriously, looking back on it, I almost laugh. We arrived in New York at midnight and finally checked into our room at 1am. We had to be at Sloan-Kettering at 7:30 the following morning, so that was fun. Never in my life did I need hand lotion SO BAD!
Of course, Canon's little over-worked veins were not willing to cooperate. It only took 3 nurses the first day, but 4 nurses the second day to hold him down for his IV. I was more worried about the kids sitting in the waiting room having to be subjected to his screaming. I tried not to make eye contact with any parents as we exited the IV room. Whoosh!
No results as of yet. I am sure the MIBG and CT will be in tomorrow and I will post an update. We did have a good time in any event. We hit Times Square, of course, with our usual dinner at Bubba Gump. Some things you just can't do without!
Thank you all for your continued support. It is great to hear from you in emails and on guestbook entries! Love to all! God Bless!!--Malissa
UPDATE FRIDAY 6:15PM -- STILL NO RESULTS. HOPING NO NEWS IS GOOD NEWS. LOOKS LIKE WE WILL UPDATE ON MONDAY!
Friday, August 11, 2006 3:47 PM CDT
Well, looks like Canon will need to leave his hair gel at home. What a crazy time to raise the security level! We will be flying Monday, so I am trying to mentally prepare myself for long security lines, three restless kids, no husband, and no hand lotion. I hope I make it...
Thank you for everyone who is checking in on us. We appreciate SO MUCH the extra prayers as we enter another dreaded S..C..A..N....W..E..E..K!!!
Love to all and keep all of our other buddies in your thoughts and prayers. This is a long journey for all who are on it! God Bless!!--M
Monday, August 7, 2006 11:33 AM CDT
I was browsing through some old emails and ran across this one from October 2004. I thought I would share it to show how far we have come. This was the first treatment of anti-bodies (much harder than chemo in many ways)...
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Well, we made it through our first treatment of antibodies. It was quite rough. The infusion lasted about 40 minutes. The pain started almost immediately. He was just starting to fall asleep with the dose of benedryl they pre-medicated him with, when he sat up and looked at me with a look of panic. The pain started in his legs and worked its way up. He had a hard time breathing, as the pain causes pressure on his chest. He had a look of agony on his face throughout that I had never seen on him before. As I tried to rub his back or stroke his head, he yelled not to touch him. It made me think about when I was in labor and thought that maybe it was a similar pain. Its hard to say.
He is resting peacefully now. They said that he should sleep most of the afternoon. He was given quite a bit of pain medication in the 40 minutes he was suffering. One day down, nine more to go (this month anyway). Cancer really sucks.
Love, Malissa
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Well that says it all. CANCER REALLY SUCKS! Please keep all of these fighters in your prayers. Kids going through this experience are truly heros.
Scans start Tuesday, August 15th. Thank you for caring!
Love, M
Thursday, August 3, 2006 9:17 AM CDT
Looks like they had to change our scans around so we are leaving Monday, August 14th now. If all goes well, we are scheduled to return the 17th. Canon is taking his siblings with him this time, so they can see the Big City before school starts. Trent is busy with work so it will just be me and the 3 kids in NYC--yikes!! I'm going to be totally out numbered.
It will be good for Canon to have Cayden with him. She is like his twin and is quite the little nurse. Whatever he needs she is ON IT. Caleb is my big helper since he can carry bags and all of our travel gear. Never in a million years would I have thought I would ever take my 3 kids to New York City--by myself! See what cancer does to you? Changes the family in more ways than one.
Okay folks, lots of prayers requested here. In addition to Canon's scans, we have a number of other friends going through the same thing--some this week. Please add these kids to your prayer list. I've said it before, but the power of prayer is AMAZING!!
God Bless! Love, M
Tuesday, August 1, 2006 11:58 PM CDT
SCANS HAVE BEEN SCHEDULED. We will start scans August 9th at Sloan-Kettering. I hear they are having a heat wave in NYC this week. I hope it passes before we arrive. You do a lot of walking there, so 100 degree temps don't sound like too much fun.
If you have a prayer chain going, please add Canon's name to the list. This is always a hard time. We continue to pray for clear scans for Canon and all of his buddies that are fighting this disease. Pray for big Ryan in Nebraska if you get a chance. His site is below.
Thank you, thank you to everyone that checks in now and again. We value each person who reads these notes.
God Bless!--Malissa
Thursday, July 27, 2006 0:45 AM CDT
Summer is slipping by!!!
They did a story on the Snack Cart Man at Memorial Sloan-Kettering this morning on the Today show. It was a great story about a wonderful man who donates snacks and takes them to the kids every Friday. I remember when we were in-patient, we would so look forward to Snack Cart. Sometimes Canon wouldn't eat anything except the pudding off the snack cart. The story brought back a lot of memories. We saw some kids we knew being interviewed for the piece. It really is inspiring to hear about people like this man who does it out of the goodness of his heart and with his own funds. Things like that mean so much to families like our's and children like Canon.
August is fast approaching and we will be scheduling our scans shortly. We will keep you updated as soon as we have them on the calendar. Until that time, please continue to pray for these children who are fighting every day. You can find so many through Caringbridge. Please pick one out and say a special prayer for them tonight. The power of prayer is AMAZING! Just ask Canon!!
Love to all!--M
Wednesday, July 19, 2006 11:51 PM CDT
I just wanted to say what a GREAT weekend we had with the VODICKA'S!!! They surprised us with a last minute visit and we had such a blast together. Of course, we couldn't convince Big Ryan to give up his golf game and drive 5 hours south--but next time he is required to come!
We all went to the farmer's market Saturday morning and then went to Trent's work so that Lucas could work on his baseball swing. It was great for the kids to get together.
That night we wrangled everyone up and took them to the chuck wagon dinner at the Prairie Rose. It was so much fun. The kids got to get on stage and sing for us. Canon was such as ham (as usual) and did his own choreography to "Deep in the Heart of Texas".
Sunday we introduced these proper Catholics to a full out Evangelical service (Dan was such a good sport!). They made it all the way through, even the 30 minutes of gospel rock and the Republican promotion messages! :)
Thanks for stopping in to check on us. We are really doing great. Canon is feeling good and as ornery as ever. Scans will be coming up next month. Keep us and all of our cancer families in your prayers! We love them all!!
God Bless! Love to all!--M
Tuesday, June 27, 2006 9:09 AM CDT
Last week, Canon was the Guest of Honor at the 20th Annual Crestview Golf Tournament to benefit the local Ronald McDonald House. It was so neat to see Canon out talking to all of the golfers. He was able to ride around the course in a golf cart. Always the socializer, keeping him quiet during shots was challenge! He learned a lot about golf clubs and probably drove some golfers crazy with questions...Why do you put it on the tee? Why do your clubs wear socks? What does this pokey thing do?
That evening was the awards dinner, with guest speaker Mark Turgeon (Wichita State Head Basketball Coach--for those non-Kansans!) Trent also made a speech, and did such a good job that many were brought to tears. Good thing we have a public speaker in the family!--ha Canon, Cayden, and Caleb all helped Turgeon hand out awards to the golfers.
It was a wonderful experience. Canon really reminded all of the golfers why they were participating in this event. The tournament netted over $130,000.00 for Ronald McDonald House. Netted! It was really great.
Thank you to Tracey Kennedy for asking us to participate!
Canon's picture was in the Wichita Eagle on Sunday. If I figure out how, I may be able to post it soon!
Love to all!--M
Monday, June 26, 2006 10:38 AM CDT
Hello Friends!
Where is this summer going??? This has been a busy month at the Nesmith house! We are finally all moved to the new house--not that we are unpacked or anything. Canon's new room is going to be all Yankees. He is your typical "New Yorker".
Baseball is going great. Canon lives in his uniform--even on off days! He is quite bronze from all of the swimming (I know, bad Mommy, but keep sunblock on him is quite a challenge).
Hope all is well! I will try to post some "summer" pics soon. Love to all! God Bless!--M
Tuesday, June 13, 2006 1:20 AM CDT
Sometimes I just sit and read other caringbridge sites and think, What the heck?? Why do these beautiful children have to suffer so much? The Amazing Jacob passed away yesterday (www.caringbridge.org/fl/jacob).
Someone once told me that we experience things like this to bring us back to God. I do believe that, but I just wish it wasn't such a crappy journey. My heart breaks for all the little ones that struggle daily.
NO ONE understands the pain, unless you have been there. The support from the church, community, family, and friends--as well as your faith in God--is what keeps you going in these situations. But it can never erase the underlying fears that are always there. When you read the heart-wrenching journal entries from these parents who have travelled the path you pray that you never have to take, it is hard not to question why.
Please join me in prayer that the Duckworth family find peace in knowing their Amazing Jacob is now an amazing angel with God. Love, M
Monday, June 5, 2006 11:36 PM CDT
Okay, we're BACK!! Sorry for the very long delay in updating. We are getting back in the swing of things after a stressful move to Wichita. Whoosh, we are glad that is (almost) over!
Canon started baseball tonight. He was completely decked out in baseball pants and all. This is the moment he has been waiting for since last summer. The return of baseball!!!
There are a number of little ones out there that I was just visiting websites for that are very much in need of prayers. We all know what the power of prayer has done for our Canon Ball! I'm not good at sending links, but here are just a couple of their pages:
http://www2.caringbridge.org/fl/jacob/
http://www.caringbridge.org/la/jakeowen/index.htm
Of course, we need to focus prayers for big Ryan in Nebraska. His link is below.
I also would like to tell the family of Skylar Berry how he touched my heart because he was so much like Canon. He was only 13 days older than Canon and had those big baby blues too. What a special angel God has with him now!
http://www3.caringbridge.org/ne/skylarberry/index.htm
Love to all! God Bless!!--M
Wednesday, May 10, 2006 9:21 AM CDT
WE ARE TRULY BLESSED!! Canon has come through another round of clear scans! We are waiting for the urine analysis still, but everything else is CLEAR!!
See what happens when you have prayer warriors on your side? Thank you, thank you for all of your support, prayers, and thoughts! Whoo Hoo!
Please keep our other buddies, Lana Beth, Sydney, Ryan, Jake, Ally, and so many more in your prayers, as they are fighting the battle every day. We love you guys!!
God Bless!--Missy
Friday, May 5, 2006 12:47 AM CDT
So far, so good! CT Scan came in clear. PRAISE GOD!
We are going to be heading back tomorrow. The rest of our scan results will be coming in next week. Our prayers are still focusing on getting clean results across the board.
New news on the Nesmith front...Looking like we might be moving next month. Trent has accepted the AD job at Collegiate, so here we come Wichita! Also, Cayden was diagnosed with mumps while we have been gone. How do you like that? I still don't know how that is all going to work when we get home. I really don't have anyone that I can exile Caydie to. Oh well, never a dull moment. And what's up with the MMR, isn't that supposed to keep you from getting mumps??
Like my mom said, we always have something new to pray about in this family!
Thanks for checking in. We appreciate your support and prayers. Isn't the power of prayer truly amazing?
Love to all!--M
Thursday, May 4, 2006 11:29 AM CDT
Canon and I are at Sloan right now. Canon had his bone marrow biopsies this morning and we are now waiting on CT scan. We were able to get the IV in this morning with only two nurses holding him down, which is better than usual. At least he has not been wearing his cowboy boots to the IV room. Those things HURT when you get kicked in the shin!
He is now following his nurse, Danielle, around assisting her with IV pumps and blankets. You would think he was on the payroll around here! Canon is being his usual bulldog self. We are planning a Bubba Gump trip tonight for dinner.
Everytime I speak with new families, who are just starting this journey, I am so thankful that God has brought us through this. We still continue to pray for clear scans. Sometimes I think He uses these situations to circle us back to Him. What do you think? I know..."Deep Thoughts"
Anyway, Love to All!--M
Thursday, April 27, 2006 11:42 PM CDT
We will be off to NYC next Wednesday. PRAYERS ARE NEED FOR CLEAR SCANS! We are so appreciative of all the support we have from you all. Thank you so much for keeping up with us!
Other than that, life goes on. Soccer, field trips, piano recitals... We will never again take for granted the "normal" life, and enjoy every minute--well almost every minute (let's be honest, there are bumps in the road here and there).
Scans will be conducted May 4th and 5th. (Yikes!) Please add Canon to your prayer lists. We could also use a prayer boost for our cancer family, Sydney, Lana Beth, Ryan, Ally, Jake, Jessie, and everyone that we have met along that way that are fighting hard everyday.
God Bless! Love to all!--M
Saturday, April 15, 2006 11:33 AM CDT
HAPPY EASTER!! Spring is upon us and Canon Ball is doing wonderful. Scans are coming soon, but nothing firm yet. I will advise as soon as I know. Little nervous, but we all know the drill...
Canon has been the Bat Boy for Daddy's Collegiate Spartans. He seems to bring them good luck (most of the time). He did get pegged by a ball the last game, but handled it well, giving the player a dirty look and walking on. One thing cancer does for a kid--makes them tough as nails! (Some of you know what I'm talking about.)
We are in full swing with soccer. However, Canon argues that he doesn't have to go to practice because he already knows how to play. His loyalty is with baseball I'm afraid. What can you do?
Love to all! Have a blessed Easter Weekend. God is Good!--M
Tuesday, April 11, 2006 0:12 AM CDT
Canon has a new cousin. Baby Mya was born on Thursday and she was 5 pounds, 6 ounces. So small! It was a very exciting week with the new cousin and the run at Link 4 Life.
Still waiting to see when we leave for scans. Will be coming up soon. NYC in the spring is so nice, so that will be fun.
Love to all! Thanks for stopping by! Love, M
Saturday, April 8, 2006 11:43 PM CDT
It is hard to believe that it has been 2 full years since Canon was diagnosed. How time flies...
The past 2 years have been up, down, and everything in between. We are so very thankful for where we are today and pray every single day that Canon stays clear forever. We know the statistics, but BELIEVE that God has a plan for our Canon Ball and that his complete healing will be a testament to His power.
Thank you to everyone we have brought with us on this journey, as well as all of those we have met along the way. There are so many special children and families that are fighting every day. The courage and strength of a child is truly amazing!
God Bless! Love, Malissa
Sunday, March 26, 2006 0:11 AM CST
March madness has ended for us Kansas Folk. Well, time to concentrate on soccer and baseball. Canon is way ready for both!
We will be heading to NYC again the end of April or first of May. Trying not to think too much about it. So hard to go through this anxiety every 3 months, but very necessary!
Love to all! God Bless!!--Miss
Saturday, March 18, 2006 3:52 PM CST
Well, last night was disappointing when our beloved Jayhawks fell out of the Big Dance in the first round. Canon was in full uniform last night to cheer them on. Unfortunately, Bradley had the better of us. Very disappointing.
We are watching our Wichita State Shockers today. They are our last hope!!
Hope you are all doing well and enjoying March Madness as much as we are. Canon and the kids start spring break this week, so we are looking forward to taking it easy for a week. Next week will start Spring soccer--YEA! Canon has been waiting all month for soccer.
Thank you all for your prayers and support! Love to all!--M
Tuesday, March 7, 2006 0:06 AM CST
The home page photo is from the trip to Kansas City a few weeks ago. Canon had such a good time meeting all of the football players. Travis' organization (which made this AWESOME trip possible) is going to be profiled in the KC Star and might be mentioning Canon. I will post the link once we have it.
We are again so thankful for the progress our Canon Ball has made. God is Good! Please continue to hold our friends in your prayers as we all still need them! Our little Lana Beth could use extra prayers tonight. She is such a little spunkie girl and we just love her and her family. www.caringbridge.org/ga/lbw
Love to all!--M
Saturday, February 18, 2006 3:45 PM CST
I AM THE WORST! I know. I haven't updated for the longest time. We have had such a great (and busy) month. Last weekend, Canon was invited to the Kansas City Brigade arena football game, with Ryan from Nebraska, by the AWESOME Travis Worley. He has an organization that makes things happen for kids that have been through illnesses like Canon's. It was the best time!!
Canon absolutely loved it (even though he napped through the second half). Travis gave Canon a football and all the players signed it after the game. It was so cute to see him standing there holding up his football to those big guys!
Before the game we were able to take a behind the scenes look at Cabela's. This was about the best place for Canon. He is all about the outdoors! They let him pick out a gift and he chose a hunting hat, hunting jacket, and a camo head & neck cover. As soon as I have the pics developed I will post them. (Yes, again I forgot my camera) He was a hoot! He wore his gear to school on Monday and a dad asked him "Did you come to school today as Dick Cheney?" So funny.
Thank you so very much to Travis, Cabela's, and everyone who made this magical weekend possible! We are truly blessed. Love to all!--M
Friday, February 3, 2006 9:30 PM CST
SCANS ALL CLEAR!!!
I am so sorry it has taken me so long to update. After being in NYC for a week, this week was totally crazy! I am so happy to report that all scan results are clear! Thank you so very much for praying, thinking about us, and supporting our little Canon Ball.
Canon will be fitted for his hearing aids on Monday. I am excited to see how he reacts to his "bionic ears". We will have to post some pictures when we get them.
Everyone has been so wonderful, helping us with grant information. I am so thankful for the tips. It is paying off! Your prayers have definitely helped as well. What a great feeling it is to get these good results. Now we wait 3 months and go through it all over again! Until then we will thank God for the miracles he is working in Canon.
Love to all! God Bless!--M
Friday, January 27, 2006 10:58 AM CST
CLEAR SO FAR!
I'm so excited to update everyone that our inital scans are coming in clear. MIBG and CT scan results are clear. Very exciting!! We won't have MRI or Bone Marrows until next week, but we are coming home on a happy note.
Last night Canon when to Skate with the Greats, where the kids were able to ice skate with the NY Ranger hockey players. It was so much fun. The NYPD were there as well helping the kids skate. It was Canon's first time on the ice and I couldn't get him off! He even went a few laps with Rod Gilbert, one of the greatest hockey players to play the game! I will post pictures when I am able to use my own computer again.
We went to The Lion King on Broadway Wednesday night. It was so incredible! Canon absolutely loved it. If you haven't seen it, I would highly recommend it to anyone. What a wonderful show! Canon got a stuffed Simba and a t-shirt. He was really into the entire show.
We will be coming home Saturday morning in high spirits. We have had a great week in NY and have had great test results so far. Thank you all so very much for your prayers!!!
Love to all! God Bless!--M
Wednesday, January 25, 2006 9:22 AM CST
Canon and I are getting into our big day of scans today. We just finished MIBG and Canon is sleeping. We will go into CT here shortly. I had a panic attack moment this morning in the MIBG. I suddenly felt like I had not prayed hard enough and started to stress when the screen was lighting up his little body. It is so hard to see those scans taking place and not being able to interpret what they are showing. One thing the tech always says, is don't try to read into them. Only the doctors know what they are showing, but as a parent you try to remember what the last scan looked like and if this one looks different or not. It is enough to make you CRAZY until you get the official results. Long story-short, I don't have any results yet. I am hoping that the MIBG is the same as last time, but we probably won't have those results for the next day or two.
Good news--we received funding for Canon's hearing aids, so they are in the process of ordering them. We should be able to get fitted for them when we get home. We are so very grateful for those who came to our rescue (and you know who you are!!). Thank you all for helping with organizations and information. What a process! We went with the "clear" aids rather than KU red and blue. I think in the long run Canon will be happier. He said he was going to look like "I ROBOT" with the clear color. He thinks it will be cool to have bionic ears. Don't you just love kids?!?
We have had a chance to do some outings this week. Last night we went to Madame Tussauds Wax Museum. That was the craziest thing. You really felt like you were sitting next to George Clooney. It was great! Canon loved the sports guys. His favorite was Jeter (thanks for clearing that up Dad!). Tonight we are going to The Lion King on Broadway!! I am more excited than Canon I think.
I will update more when I have more information and results. So far so good, but then again, we really don't know anything yet. Stay tuned!! Love to all!! God Bless!--M
Friday, January 20, 2006 10:28 PM CST
Well, friends, next week will be a big week for our Canon Ball. Canon and Mommy are headed to the Big Apple for scans and testing. We are praying very hard this week for clear scans and good news. The farther out from treatment, the more nerve-wrecking these weeks are!
We had another hearing evaluation this week and Canon's hearing loss is pretty significant. It has been heart-breaking when he complains that he can not understand what his teacher is saying. He clearly needs hearing aids as soon as possible. We are currently making attempts to apply for grants to supplement the expense of the hearing aids, as our wonderful insurance company does not cover them. Initial estimates for his type of aids start at $5200. Yikes! If anyone has suggestions of organizations that we could possibly apply to, please let us know! It is so hard that these children go through all that they do and then they have this inconvenience added on top of everything.
Well, next time we update, I will probably be doing so from NYC. Thank you all for being so supportive and caring. Your thoughts and prayers are so much appreciated! God Bless!! Love, M
Thursday, January 12, 2006 0:39 AM CST
WE'RE BACK! What a fabulous time we had at Disney World!! Thanks to Our Man--Rich, Steve the Pirate (Argh), and New York's Finest--Jimmy. We love you guys and thank you so much for a great trip to sunny (but cold) Florida. What a whirlwind of fun! We hit all the highlights of Disney World and Universal Studios and it was just AWESOME! Rich is a MACHINE running our crazy crew of about 35 people from park to park, ride to ride, and stopping anytime I was dying of hunger. We are forever appreciative for putting this together and allowing us to tag along!!
We spent 5 days with some of the greatest families you could ever meet. I know I have said it before, but one of the positive things that comes out of this cancer thing is meeting such wonderful people and immediately gaining extended family members! I am adding new pics to show you all some of the craziness. We will forever remember the good times this trip brought us.
Now it is back to reality. Canon and I will be traveling to NYC for scan week (yikes!) on th 23rd. Again, we are asking anyone who has a few extra seconds in their nightly prayers to stick Canon's name in and make a request for clear scans. We all hate these weeks, but a clean report is the best feeling in the world!
Love to all! Thanks again for stopping by and don't forget to check out our Disney pics when you have time!--M
Monday, December 26, 2005 1:04 AM CST
MERRY CHRISTMAS EVERYONE! God is good and we are so thankful for the wonderful year we have had. We continue to pray that 2006 will be even better.
We had the BEST Christmas today. Santa was good to us!
Thank you all for stopping in. We appreciate your thoughts! A blessed New Year to you all!! Love, Miss
Thursday, December 22, 2005 10:41 PM CST
It's beginning to look a lot like Christmas...
Well, friends, we are having a wondeful December. Canon and his siblings just started the Christmas break. We had such a full schedule this month with dance recitals, piano recitals, Christmas programs and parties, it will be nice to have a little down time. We will need to rest up for the big trip to DISNEY WORLD! Canon is so very excited! I can't wait to see his reaction when we walk in.
Please have a HEALTHY and happy holiday season. Be careful, whatever you are doing, thank our AWESOME God for all that he has blessed you with, and remember the reason for the season!
Love to all! God Bless! Love, M
Sunday, December 11, 2005 0:18 AM CST
Happy Holidays and A VERY MERRY CHRISTMAS!!! I just wanted to update to let you know we are having such a wonderful holiday season. We had a beautiful snow a few days ago--not enough to cancel school, darn it! The kids are looking forward to their Christmas break. We are going on our Disney World trip the first week of January, so they are very excited, to say the least!
Canon is feeling great and getting a bit chubby. It is so cute. He has the attitude of a 36-year old and thinks he is the boss of the house, so that has been a little challenging. I find myself struggling daily with the discipline. Most of the time, just when I am at the end of my rope, the thought "just be glad you have him here to make you mad" pops in my head. How do you handle that situation? It is something I am going to have to work out.
Anyway, thanks for stopping in. We appreciate your thoughts and prayers. Remember the reason for the season, and have an happy and loving Christmas!!! God Bless! Love, Miss
Monday, November 28, 2005 10:20 PM CST
I tell ya what, those Vodicka's are a crazy bunch! We had the best time this Thanksgiving in Nebraska. Of course I ate way too much pumpkin pie and drank way too many Egg Nog Latte's. Thanks Big Ryan and family for having us for another whirlwind adventure!! (Check out his site to see a few pics) How cool is it that you can go through one of the worst experiences in your life and come out of it with such an awesome extended family?!?
We are looking forward to the Christmas Season. Canon is keeping busy with school and his pets. He has started his own workout lately. He enjoys doing push-ups while I am on the treadmill. You don't have to ask him twice to flex his muscles for you (I think he picked that up from his father-ha!)
January will be a big month for Canon Ball. We are actively trying to get him into a new study for children in remission. Our prayers are that he stays clear and is eligible in January. It will mean continued trips to NYC, but it is all worth it if we can keep this demon out of our lives!!
Please continue to pray for Canon and all of these beautiful children who continue to fight each and every day. God Bless! Love to all!--M
Saturday, November 19, 2005 10:51 PM CST
Yes, Canon has added a new pet to the Nesmith household. He took his birthday money (Thanks Aunt Brookie and Nanna!) to Petco, and came home with a new friend. "Donald" is our new Water Dragon. Canon is mister lizard-man. The good thing was that I was able to talk him out of the snake and the tarantula!
Canon had such a good birthday. What a blessing to have him feeling so wonderful this year. I think about his 4th birthday party last year, when our late friend, Crunchy-T Clown shared with Canon their common bonds. I remember them sitting together rubbing each other's bald heads. It was a sweet moment I will never forget. How hard it is to see our friends lose their battle with this disease! We continue to thank God everyday for the miracles he has worked in our Canon.
Thank you for checking in on us! God Bless! Love, M
Thursday, November 17, 2005 10:53 PM CST
HAPPY BIRTDAY OUR SWEET BOY!!! WE LOVE YOU VERY MUCH AND ARE SO HAPPY YOU HAVE HAD SUCH A WONDERFUL BIRTHDAY!
CANON'S SPECIAL DAY WENT A LITTLE SOMETHING LIKE THIS:
1) KRISPY KREME DOUGHNUTS FOR HIS CLASS AT SCHOOL
2) TO THE DENTIST FOR A FILLING (who scheduled that???)
3) BIG PARTY AT "PUMP IT UP" WITH HIS CLASSMATES
AND
4) FAMILY DINNER AT KOBE JAPANESE STEAKHOUSE
Sad, but true, our new FIVE year old is still awake opening presents from his party. We will try to post some pics when Mom gets some rest!!!
Love to all! God Bless!! Love, M
Monday, November 14, 2005 0:18 AM CST
Our Canon Ball turns FIVE on Thursday. Wow! How did that happen? Our little man is looking forward to the big 5! I was trying to get away with a nice easy family dinner, but he told me in no uncertain terms that he was having a party this year at PUMP IT UP! So...we are scrambling to put a party together with his classmates. Who could blame him, right?
Canon is really doing well. We are so very thankful every single day for his continued good health. He is getting a little chubby! I love seeing his little stocky body run through our bedroom as he "lightsaber" fights with his brother.
He has been enjoying his new pet, Gimli. Gimli is a Bearded Dragon and very cute (as lizards go). Canon is the only one in the family brave enough to feed him the live mealworms. ICK! He has been teaching him to sit on his head as he walks around the room. I guess when you have been through everything Canon has, a lizard on your head is NOTHING!!
I will work on a new picture collage in the next couple days! Thanks for checking in!! Love to all!--M
Saturday, November 5, 2005 11:30 PM CST
I know, I have been the worst at updating! Halloween went so well. I will try to post some new pictures soon. VERY FUN!!
Canon is preparing for his Thanksgiving program. I visited his class and watched the other day. He is a total crack up! You should see him do the "Turkey Tango." What drama!
Can you believe we are talking about Thanksgiving? Wow, how time goes by so darn fast! We have had a lot to be thankful for this last year. Please know how much we appreciate all of your love and support.
God Bless!!--M
Sunday, October 23, 2005 11:12 PM CDT
Well, as you can see, Canon's Halloween costume arrived. I bought him the movie, Top Gun, a couple of months ago. So, there was no question what he was going to be for Halloween this year. How appropriate, as he is a true fighter!
We are still so happy this week after learning the scans were CLEAR across the board. Now we must keep this demon at bay. We pray every single day that Canon remains clear and that those we have met along the way remain clear as well, or are able to get there soon.
I learned a friend of a friend's child was just diagnosed with Neuroblastoma recently. I feel for the family, as I know exactly what they are experiencing right now. What dark days they are about to go through. Please pray with me that they, and all of the families that are hit with this news have the support and love that we have received. We truly love and appreciate you all!
God Bless!--M
Saturday, October 22, 2005 5:29 PM CDT
We finally received word from Dr. Modak that Canon's bone marrows were clear as well. It has been an incredible load off of our minds. We were encouraged by the CT and MIBG, but the bone marrow was one we were really concerned about. Thank God (again) for the wonderful miracles he is working in our Canon Ball!
Thank you so much for your prayers!! Love to all!--M
Friday, October 14, 2005 1:10 PM CDT
GOOD NEWS!! Inital scans are coming back CLEAR!! Thank you God!! CT and MIBG are looking good and Dr. Kushner said he would see us in January. We are still waiting on bone marrows, which we will not have until next week sometime, but so far so good!!!
I'm so excited I can't quite contain myself! Thank you all so very very much for the prayers! They are definitely working in our little Canon Ball!
Love to all!--M
Wednesday, October 12, 2005 9:19 PM CDT
The boys arrived in NYC today, after a rain delay in Chicago. They are all checked in at the Ronald McDonald House. Canon was already asleep when I talked to Trent earlier.
BIG DAY OF SCANS TOMORROW! Any and all prayers are welcome and appreciated!! :)
I will update with any information as I have it. Thank you for stopping by and for caring!
Love to all! God Bless, M
Friday, October 7, 2005 9:38 PM CDT
Well, one thing you learn with cancer, is NEVER PLAN ON ANYTHING! Our schedule was completely changed by Sloan, due to Columbus Day. What's up with that?? Columbus Day? Seriously!
Anyway, they have no radio-active injection for the MIBG until the end of the week, so instead of coming home next Friday, Canon will be starting his 1 hour scan at 3pm that day. Now, Canon and Trent will be leaving for New York next Wednesday and coming home Saturday--if I can get their flights changed around. It is costing us an extra $200 to change the tickets unless I want to leave the boys in NYC for 5 extra days! They probably would enjoy it, but Momma would miss them too much.
Hope you all have a nice weekend and enjoy every minute you spend with the ones you love. God Bless!! Love, M
Wednesday, October 5, 2005 11:19 PM CDT
Hello Friends!! I am so sorry about the lack of updates lately. We are having such a busy fall season. I'm afraid that it is only going to get worse, as Trent's coaching season will be starting soon with high school basketball.
Canon and Trent will be leaving on Saturday afternoon. They will be in NY for the week doing scans. We are missing another picture day at school this year. We just can't seem to get in that yearbook!!! Oh well.
Canon is having such a great school year so far. He loves going to school! He loves playing soccer--he is quite the defender!! His sister, on the other hand, has gotten into the routine of getting all suited up, making a pillow out of my soccer bag, and sleeping for the majority of the game each Saturday morning. At least I have ONE athletic child! ha!
Please join us this week in praying HARD for safe travel and CLEAR SCANS!!! Please focus energy on Canon next week (CLEAR SCANS, CLEAR SCANS, CLEAR SCANS...)and pray that he is able to breeze through without too much "IV" anxiety (no boots kicked across the room!). Thank you, thank you, thank you for your love, support, and prayers!!
Love to all!!--M
Friday, September 16, 2005 11:28 PM CDT
We are enjoying the month of September. School, soccer, and football games. Take a look at the new picture collage if you have time.
On October 9th, Canon will be heading back to Sloan for his 3 month scans. Any extra prayers will be appreciated!
Ryan's scans turned out good. Good News! Hopefully, we will get to see him again before he starts back at school. I included a couple of Omaha zoo pictures from our visit with Ryan and his family. What a FUNNY WEEKEND!!
Thanks so very much for stopping in!! Love to all!--M
Thursday, September 8, 2005 8:58 AM CDT
I'm having a hard time uploading photos today. As soon as I figure out the problem, I will get some new shots for you to see.
Canon is doing great at school and loving soccer. Our first game is this Saturday!!
Hope all is well! Love to all!--M
Thursday, September 1, 2005 10:48 PM CDT
I know, I need to update desperately! I have some pictures to post from our AWESOME trip to Nebraska last weekend, but I'm never at the right computer at the right time!
Ryan is looking so great! Still has the Liberal attitude, but we are working on him!--ha Canon had so much fun in Missy's daycare area. What a spot! No wonder she is the Pied Piper of children!
Canon started school on Wednesday and is just doing fantastic. He just struts right on in to class. He loves his teacher and loves telling me--in great detail--what he did in school each day. Sometimes it feels like I am talking to a 34-year old, rather than a 4-year old. He is quite a little character. Yes, Missy, we are still trying to break the New Yorker type expressions (don't ask...)
Soccer started Wednesday as well, and Canon was right out there on the field with the big kids. I am playing him up this year to avoid two soccer games each weekend, so he is playing with big sis in the K/1st grade league. I think it will be great. He looks so sweet in his shin guards and soccer shoes. Like a regular Beckham (even more handsome, if you can imagine!)
Have a good Labor Day weekend, and I will try to get new photos posted soon! Love to all!!--M
Wednesday, August 24, 2005 12:11 AM CDT
AUGUST 24TH...What a date! Nine years ago I was in the hospital giving birth to my oldest son, Caleb. What a happy day! Last year on this date, I was in the hospital waiting 10 hours for Canon to come out of surgery. What a stressful day!
Both days turned out extremely well, so we are very blessed. It is truly hard to believe that his surgery was one year ago today. What a difference a year makes! Last year he was about to get hit with the high-dose chemo that put him in the hospital and in intensive care the entire month of September.
Whew! What a turn around, praise God!! Thank you all for stopping by. It is so much fun to get messages from around the world! The friends you meet along the way make the stressful situation more bearable. Support from family, old friends, and new friends is what keeps families like ours going. That is a fact! Love to all!--M
HAPPY BIRTHDAY MY SWEET BOY, CALEB. THANK YOU FOR BEING SUCH A WONDERFUL OLDER BROTHER TO YOUR CANON BALL!
Sunday, August 14, 2005 1:09 PM CDT
Well, this summer is just flying by. Fortunately, the kids don't have to start school until August 31st, so we have a few more fun summer weeks left. We went school shopping for Canon this weekend. He bought a number of button-down shirts so that he will look "handsome" when school starts. He is quite the fashion-forward four-year old.
The kids finished their last week of summer camps Friday. We are going to chill and let them sleep in a little until school starts. Canon just got another haircut, but kept the curls on top. So cute! He has requested "snake-skin" boots for school this year, so I will probably have to see if I can find them in a small enough size.
Sorry, we don't have anything new to report. I guess in a way, that is a good thing, right? Canon is having a wonderful summer. That is what is important.
Thanks so much for stopping in! Love to all! God Bless!--M
Sunday, July 24, 2005 9:18 PM CDT
Well, as you can see, we have a new addition to the family. Canon and Caydie are enjoying Caydie's birthday gift, Lady Fannie of Omaha--Fannie for short (our fellow Steve Martin fans will appreciate the name!).
She is a black pug who was the runt of the litter. She is half the size of her siblings, so she should stay rather small. Caydie had requested a chiquaqua, but when we saw Fannie there was no question. She was the kids' favorite. She is already ruling the house and putting Frodo in his place. Canon wraps Fannie up with Lambie and carries her like a baby. It is so cute!
I have updated the pictures to include one at the Mets game and one at the playground in NYC. Hope you all continue to have a wonderful summer. We are experiencing 100 temps all last week and this week. Canon is looking forward to Soccer. We just signed up and he is already begging to get his shin guards. We won't have to go back to NY until OCTOBER (wow!) so this fall should be so much fun for Canon--and the whole family. We are going to try to make it to as many KU football games as possible (and yes Ryan, KU does have a football team!!--ha).
Thanks for stopping in. Love to all!--M
Friday, July 22, 2005 11:14 PM CDT
Hello all!! Things are looking good. The bone marrow biopsies are clear. YEA!! Such a relief as this is our first set of scans since treatment has completed. I know everyone of them will be stressful, but we are definitely enjoying the good news as we get it.
I am also thankful for the miracles that are working in our "cancer club" family members. Ryan is doing even better than expected. We are hoping to make a trip to Nebraska before school starts (oh yeah, Missy & Ryan, we are planning a trip to Nebraska before school starts, is that okay?) :)
Thanks again to all of our awesome supporters! We are happy that you stopped in!
Love, M
Tuesday, July 19, 2005 4:12 PM CDT
GOOD NEWS!! CT and MIBG are clear. Very exciting! We are still waiting on results from the Bone Marrow. They usually take a little longer.
EVEN BETTER NEWS with Ryan from Nebraska (see site below)!! We were praying for stable or slight reduction in tumor--but scan show NO tumor! How do you like that?!?! We are so extremely happy and know that it is the power of prayer working in him. Praise God!
Thank you, thank you, thank you to everyone who continues to keep us in your prayers. It is definitely working!
Love to all!--M
Monday, July 18, 2005 5:00 PM CDT
Okay, no news yet on the results. I am hoping that is good news, but you never want to assume with this cancer thing! Anyway, I plan to call tomorrow to see what they know. I am hoping that since the abdominal scan was clear, we are doing good, but I will give a new update the moment I hear!!
Canon had a class at school today about airplanes, and he could have instructed the class, from what I understand. He was a little disappointed because he thought they were taking a field trip to the airport. Can you imagine a group of 10 4-yr olds on a field trip to the airport?!
Good week to all! I will try to get some new info tomorrow! Love, M
Friday, July 15, 2005 0:31 AM CDT
Canon called me tonight from the left field base line at the Mets game. How exciting for our baseball guru!! Daddy said he was a little groggy from the sedation during MIBG, but he was coming out of it once the game started. I am so happy he finally made it to a real game! He was not close to feeling up to a game this time last year--but now he is back in action! Praise God!!
We only know that the abdominal CT scan looks clear. We do not have any other results yet. Trent and Canon are flying home early in the morning, so we should be hearing from the doctors sometime Friday or Monday. Probably Monday.
Anyway, thanks so much for your thoughts and prayers. Love to all!!--M
Wednesday, July 13, 2005 8:12 PM CDT
Canon made it through CT, Bone Marrow, and MIBG injection today. He and Dad headed to Niketown in the early afternoon. They are doing great. Tomorrow is the MIBG scan and a search for Mets tickets (Yankees are out of town).
Thanks so much for your thoughts and prayers. He is cruising through this like a pro. We pray that the results come back as good. Love to all!!--M
Tuesday, July 12, 2005 9:22 PM CDT
The boys are on their way to NYC. They called about 7:30pm and said their flight was delayed due to weather in Chicago--or maybe it was the NY weather. Anyway, last I heard they were stuck sitting in the airplane waiting to take off. Canon is being Mr. Social, though. He always makes friends along the way! As many of you know, he never runs out of questions. That poor pilot we sat next to on our last flight! All he wanted was a nice quiet ride back home to Chicago--and then he got placed next to Canon. :)
Thank you for your continued prayers. We are doing a major focus of prayers tomorrow morning starting at 9am in NY as Canon begins his CT Scan. He will have bone marrow and MIBG done as well. Please add a little extra prayer in tomorrow morning for Canon. Also include Ryan, Jack, and a number of others who are going through scans as well this week. We all, unfortunately, understand how stressful and emotional these weeks are for us in the "Cancer Club."
Never forget to smile and enjoy every day that God gives you and your family together. Love to all!--M
UPDATE: Canon and Trent just called and they are safe (as safe as you can be in New York City, right?) and checking into the Ronald McDonald House.
Monday, July 11, 2005 10:32 PM CDT
Canon and Trent are getting packed. Tomorrow they head back to NYC for scans. Please pray that they arrive safely and that the scans come back clear.
Thank you for thinking of us and stopping in. Your support means more than we can express in words!! Love, M
Wednesday, July 6, 2005 9:41 PM CDT
Hello all! Thanks for giving Canon hugs. We now run to the computer once we get home to see how many hugs he has today. So fun! Caydie asked tonight, "why is everyone giving him pugs?" I told her we would be pretty busy with that many PUGS!
I can't wait for the nurses to see Canon in NY with his curly sun-bleached blonde hair. Last time he had to tell some of them who he was (unless he had his boots on and then he was a dead-give-away). One girl at Ronald McDonald that he had become pals with the summer before, asked him what his name was and was shocked that he was her little LOOSE CANON! It is fun to see their reactions.
Good week to everyone! Thanks again for stopping in. Try surfing around with some of the other links. You meet a lot of HEROES fighting an incredible battle! Love to all! Make today and everyday special!!--M
Sunday, July 3, 2005 9:51 AM CDT
Oh my, how hard it is to update about what a wonderful summer we are having when I have been reading about children who we knew from New York (one we shared a hospital room with), who have become angels this week. I can not express in words how horrible this disease is. Why does this have to happen to these beautiful children?!? It is a good thing I am going to church today because I really need to do some praying about it.
Canon is his normal firecracker self (appropriate for this weekend). We did fireworks last night and have more planned for this evening. He is in Sunday school right now and looking forward to Vacation Bible School. Trent and Canon will be leaving for NYC on the 12th. We continue to pray for good scans.
Thanks again for stopping in! We are having fun meeting new people through the website, so send a little note if you have time. Canon loves to hear them!
Each day is a special day. Please make the most of it with your children and family as well!! Love to all!--M
Wednesday, June 29, 2005 1:11 AM CDT
I know, I know...New baseball pictures are coming as soon as I find the cord to charge my camera. We are crazy busy with games this week (Tues thru Sat). I will get a bunch of cool shots and post them this weekend.
We are doing well and hope you all are having fun this summer (as much as you can anyway, right Ryan?) Please continue to keep Canon and all of the cancer fighters in your prayers. The fund raisers, like Relay for Life, and the commercials for St. Jude's have a whole new meaning now. Please don't let them go unnoticed until you are in this situation. We need to fight this horrible disease! Prayer is a powerful thing! God Bless! Love to all!!--M
Saturday, June 25, 2005 11:46 PM CDT
Trent and Canon will be heading up to NYC on July 12th. They are going to do CT, Bone Marrows, and MIBG Wednesday and Thursday, and the boys will fly home Friday. Short and sweet!
Canon did such a great job at his baseball game this morning. He slides into every base, and he loves the red dirt that he gets on his baseball pants. He is a big ball of dust when he leaves the field, but it is so much fun to watch. What a professional!
Thank you for all of your messages. Canon loves to find new ones on the guestbook! It is fun to hear from everyone! Hope you all are enjoying your summer as much as we are. Love, M
Tuesday, June 21, 2005 9:58 PM CDT
Hello all! Dr. Modak called today. We are finished with 3F8 now. We will go to NY on July 11th for scans. Canon was happy when I told him no more 3F8!
I guess the question becomes, as with so many other neuroblastoma families, what happens next? Wait and see. This disease is so evil. We just pray everyday that Canon will stay disease free. The Doctors tend to indicate a 50/50 chance of relapse. I believe the actual statistic is 40% cure / 60% relapse. Doesn't sound so great, but it is better than 80 - 90% relapse rate 15 years ago. Anyway, like they say at the very beginning, your child is not a statistic. He is your child and they all respond in their own way. I just ask God to put him on the cure side.
To watch him out on the ball diamond, you would never guess how sick he was a year ago. He is a true miracle. He has come through a year that would have crushed most adults. He has grown taller, thicker, and has way more attitude than the average 4-year old!
I am so glad to have all of you as our support system. Some of you I talk to daily. Some once in a while. And some I have never spoken with. Each one of you are special to our family and we appreciate the prayers, love, and support. Thank you for being there. I can't say that enough.
Here we go...the second phase of our journey. We pray that it will be an easier ride than the first. Love to all! God Bless!!--M
Monday, June 20, 2005 1:56 PM CDT
No call from New York yet. Still don't know what our plan is. I think they are having to discuss Canon at today's meeting. He always seems to perplex the experts!!
Will update as soon as we know. Baseball is going awesome. I will post some cute pics soon! Love to all!--M
Friday, June 17, 2005 4:19 PM CDT
Canon is HAMA positive...again. We are waiting to find out what the next step is. Dr. Modak is supposed to call and let us know. My guess is that we may be done with treatment (but we have heard that before!!). I will update as soon as I hear.
Thanks again for checking in on us! Love to all!--M
Monday, June 13, 2005 11:31 PM CDT
Hello everyone! We are doing very well. Canon is in week 2 of his Summer Exploration. This week he is in Gymnastics camp and enjoying the pool. He just finished his last round of accutane--yea!
I finally put together a new picture collage of the past month. We have a mix of NY and Kansas pictures. Ryan from Nebraska and Canon posed with Canon's Napolean Dynamite shirt. We also have some fun shots at the lake (notice the BIG fish Daddy caught!!)
Thank you so much for checking on us. We are happy you are there!! Love, M
Thursday, June 9, 2005 9:39 PM CDT
Hello Friends!
I am sorry we have not updated lately. We have been so very busy with summer activities. Canon is in Summer Explorations at school. He is really enjoying it. His afternoon class is with Ms. Mattix so they get to catch up on lost days from our NY trip. He is excited to be able to swim freely again--no central line!!
He started gymnastics class again and is loving it. He also--of course--is playing T-ball. His first game was rained out, so we are hoping for clear weather this Saturday. He goes to practice in full Yankee's gear (which happens to be his team's name).
We did HAMA blood draw today, which Canon was not happy about. He was in the doctor's office all afternoon yesterday. His left pupil has been affected by the radiation it would seem, and will not contract at the same size as his right. Just one of those things he will have to live with. I makes him a little unique. He also had to start his immunizations from the beginning, so he received his first round of newborn shots (2 in each leg--yikes!).
Hope you all are doing well and enjoying the summer. We are watching the tornado warnings every night here. Luckily nothing too close--knock on wood. I am going to try to put together a new picture collage soon so check back in a few days. Love to all!--M
Friday, May 27, 2005 3:42 PM CDT
WE ARE FINISHED!! Our 5th round of 3F8 is over and Canon could not be happier. He dressed up for the occasion as you can see.
Hope you all have a happy and safe Memorial Day Weekend! Love to all!--M
Thursday, May 26, 2005 2:36 PM CDT
One more day of 3F8 !!! Thank goodness. Today has been rather heartwrenching as our friends from Wichita are here for 3F8 treatment as well, and they are having a very rough time. This stuff just sucks! I could be harsher, but this is a family site. :)
Canon has been doing fairly well. He has his up and down moments. I asked the doctors today if they have something to fix his attitude. It is a hard balance when you know they are going through something like this, yet you have to maintain a certain level of discipline. I think it is natural for these kids to take it out on the ones closest to them.
Anyway, we are looking forward to a good Memorial Weekend at home. Hope you all have a good one as well. Love to all! Thanks so much for checking in!!--M
Wednesday, May 25, 2005 1:09 AM CDT
Well, we are making it through the 2nd week of 3F8. Monday was not too bad, but Tuesday was kind of rough. His pain level is really hard to predict. We were expecting Tuesday to go easier than it did. As Canon says "You just never know!"
Canon's class has a new butterfly and he is excited to hear of their progress. He misses his friends so much. He is excited to start some summer activities when we get home.
Canon had a big night watching The Contender. He likes to play "Manfredo" after the show, and wears Mom out making me hold a pillow while he punches it. His hand is wrapped for his IV line and he thinks it makes him look more like a boxer. They had the big finale live tonight and he told his nurses all about it. It was great! He didn't miss a minute of it.
Thank you all for your prayers. Three more days of treatment and we will be heading back to Kansas. We can't wait! Love to all!--M
PS: Missy and Ryan from Nebraska came to visit last night and we had so much fun! We were so sorry to see them go. It is hard when you get used to having good friends around and then they are gone. Canon was so glad to see them!
Wednesday, May 18, 2005 1:43 PM CDT
Here we are, Day 3. Canon is holding up pretty well. He is such a fighter. He enjoyed hearing from Ms. Mattix. His class at school is watching the caterpillars become butterflies and she is keeping him up to date on their progress. It is very exciting for him to get the updates! What a wonderful support system we have.
Canon has been very tired from his treatments. He has been sleeping most of the afternoon. Last night he woke up long enough to eat Chinese food, watch American Idol, and go back to bed. We were unable to go to the Mets game, which we had tickets for. Hopefully, he will feel well enough to make one of the games. This weekend is Mets/Yankees, but those tickets may be too hard to come by!
There is a family here that we have enjoyed time with that is having a bad time. Their scans are not as they had hoped. Please add a name to your prayer lists, and focus energies on Jake Miller from Georgia. They are a wonderful family and it is hard to see how brutal this disease can be on good people. Please pray that the high-dose chemo will stop the progression and that he will be able to get back to baseball and fishing soon! He also has neuroblastoma.
www.caringbridge.org/ga/jakemiller
Thanks for checking in. Love to all!--M
Tuesday, May 17, 2005 12:55 AM CDT
Well, day 2 of round 5 of 3F8. Not fun. Canon is having more pain than I expected he would. The treatments have been as hard as they were during the first round. Yesterday, after we returned to the room, Canon slept through the afternoon and night. He couldn't believe that it was time to go back to the hospital this morning. He thought he had just left!
Sunday was a nice day. Of course, we ate at Bubba Gump's and hit the Toys-R-Us scene. He is showing his Aunt Angie how to act like a real New Yorker. His only Midwest identifying feature is the fact that he wears his Boston Red Sox hat with his Yankee's baseball jersey. You should see the looks he gets!!!
Collegiate won their game last night--yea!! Canon was sad to hear he won't see anymore Collegiate games this year. Daddy will be coming up to NY once they finish this week. We are waiting to see how they do Wednesday before scheduling tickets. If we go to State, we are going to have to bring in reinforcements (hint hint Uncle Luke and Aunt Brooke).
Have a good rest of the week. Take a look at the new photos! Love to all!--M
PS: Thanks for the school pics Jing and Ms. Mattix!!!
Tuesday, May 10, 2005 8:45 AM CDT
Yep, it's official. Canon is heading back to NYC for more 3F8. What's up with that? Anyway, he is taking the news pretty well. He wants to make sure he won't miss much T-ball. He said he hates the medicine that makes him hurt, so he is not excited about that part. We have started the pep talk about the IV line, so he doesn't tear up the IV room this time around.
We went to have his hearing tested yesterday and found out that he has lost quite a bit from the Etoposide chemo. He doesn't hardly hear any high pitched sounds at all. They are wanting to fit him for a hearing aid, which I am not really excited about. They feel it is important to his learning, but let me tell you, it has not stopped him thus far. He is sharp as a tack and talks to you like he is 35. Sometimes that is a bad thing!--ha
So, to sum up, yesterday I was in a big funk. Depression was setting in slightly, BUT things could be much worse and we continue to be grateful for Canon's progress and the support we have had this past year. We love you all. We will let you know how it goes next week. Canon and I will be flying out on Sunday. Talk to you from the Big Apple!
Love, M
Sunday, May 8, 2005 11:38 PM CDT
Just when you thought it was okay to resume a normal life again...
We had a call from the doctors in NY saying they would like for Canon to do more antibodies. Yuck, yuck, yuck. His HAMA level has fallen slightly, from what I understand, and they would like to get it back up so that he continues to fight off the evil neuroblastoma. He is slated to start another round on the 16th of this month.
AAAHHHH! Here we go again, planning for another trip to NYC that we thought would not be needed. I know that it is the best thing for Canon, but we are having to change our whole mindset for the end of the month now. Canon will probably have to miss his last 2 weeks of school and his first couple of T-ball games. Oh well, if there is one thing that you learn with cancer, it is to expect the unexpected--and never plan ahead for anything!!!
We can be thankful that Canon's body has stayed clear and that all the scans turned out great. He is doing so well! Thank you all for your prayers. I wish I could hug each one of you! I will update soon once we know the exact schedule. Love to all!--M
Wednesday, April 20, 2005 9:39 PM CDT
All the scan results are in and everything is CLEAR!! What exciting news! It is hard to be completely comfortable, but we are feeling better than any words can express about the results. He has been through a wild ride of a year. Along with him has been an incredible support system of family and friends. We appreciate each and everyone of you--even those we may have never met.
We continue to pray for all of the wonderful friends we have made, like Ryan, Andrew, Joshua, David, and everyone that we have spent time with in The Ronald McDonald House or at Sloan-Kettering. As Jack's mom says, they are HEROES for their courage and fight. They are all truly amazing. I can't express that enough.
We now continue on with our "normal" life of school and planning for the summer. Canon is eager to get into summer camps and SWIM without a central line to worry about, yea!! We will return to NY in July for our quarterly scans. Now that will be a nice break!
Thank you for checking in, caring, and praying for our Canon Ball! Love to all!! God Bless!!--M
Thursday, April 14, 2005 10:44 AM CDT
Canon's scans came back clear, yea!! MIBG was clear, bone marrows are clear, and we are still waiting for CT results which was done this morning, but so far so good. He has been putting on quite a show with his Yankee's outfit, police belt, and cowboy boots. What a crack up.
We are getting ready to come home tomorrow. Canon is so excited! We will see all of our school friends on Monday! Thanks for checking in!!
Love, M
Tuesday, April 12, 2005 9:48 PM CDT
Well, here we are in NYC. Monday was rather tramatic. Canon had to start the day getting an IV line in. He was less than enthused. It basically consisted of me holding his legs, one nurse holding his arm, and one nurse doing the IV. Of course, they had a hard time getting the vein. They had to do 2 sticks, one in each arm. Before it was over we had cowboy boots flying across the room and sweat running down our brows. The nurses were asking if I was okay. Aren't Mondays fun?
After the event, Canon got his bone marrow biopsy done, but went straight to Kids Kicking Cancer Karate class. I have some cute pictures I will post when I get home to my camera cord.
Today was much better. He was back to his normal self and actually talking to the nurses again. He played in the band at the playroom. His MIBG injection made him a little uncomfortable as usual. He is now radio-active, so I hope we don't have trouble flying home on Friday.
Canon has gained quite a bit of weight and grown a head full of curly hair since last time, so many of the nurses only recognize him from his cowboy boots. We have had a number of people ask if we are just getting started with treatment and are impressed (and somewhat inspired, I think) when they find out he has just completed treatment.
Things are good and we are happy to be able to bring you all good updates. Your prayers are working in Canon!! Thank you! Love, M
Friday, April 8, 2005 1:41 PM CDT
Well, we are off on Sunday. We have a full week of scans ahead. Mommy is going this time and we are taking Grandma Ginny (oh dear!). Two born and raised Kansas girls and one very independant 4-yr old in the big city! Fun is to be had by all, I'm sure!! Central Park, Bubba Gump, Time Square... What fun it will be to have Canon feeling so good on this trip! He will be up for activities since he will not be receiving treatments. It will be like a mini-vacation for us.
We are working hard to complete brother's Pinewood Derby car (which I will miss for the 2nd year in a row)! Canon wanted to make a car for the race, but decided to just help Caleb since he will not be here to race it. He did, however, pick out his rocket for the Cub Scout Rocket Launch in May.
The weather is getting nice and Canon has been outside everyday. He loves riding his motorized 4-wheeler and mowing with Dad. Boy, does Dad hear it if he mows without Canon!!
Love to all! We will touch base from the Big Apple!!--M
Tuesday, April 5, 2005 0:02 AM CDT
Today I was reading another Caringbridge website and went to another link that was listed. This link took me to another link, and another, and another. Over and over again I read words that I had thought, felt, said, and even written myself. Family after family. Child after child. All of them going through similar experiences. The horror of chemo, the unknowing and anxiety of scan results. The devistating blow that very first time you hear that your baby has CANCER.
It is like we are in a "special" club. Not one that you would ever want to invite your friends to. But being in the club, and understanding exactly what these stranger friends are going through, in many ways--while heart-wrenching--gives you comfort. You laugh, you cry, you wonder why. Why do these precious children have to go through all of this? If cancer has to exist, shouldn't there be a rule that only grown ups should have to deal with it? These children are so innocent.
They put all of their trust in us. How sad it is when they realize that when mommy says it will be okay, many times it is not. That very first needle stick. That first IV line. The tears in their little eyes. All they want you to do is to make it better. To make those ladies in the green outfits leave them alone and quit hurting them.
Why does God give miracles to some and not to others? This is one question that I find myself asking on a daily basis. I know it is not for us to question. There is a plan for each of us. God will not give us more than we can bear, but sometimes he really puts us to the test!
Thank God for these warriors and thank God He made them so brave. Their strength should be an inspiration to us all.
Thank you for listening to my late night thoughts. Love to all!--M
Wednesday, March 30, 2005 9:38 PM CST
Well folks, that's all! We are finished with 3F8. The HAMA level is where they want it to be. I feel much better after talking with the doctors today. They are pleased with the way he has responded to treatment. His body has done everything right, so far. He has hit the magic number of 4 rounds of 3F8. Now all we are left with is quarterly scans. We will be scanning April 11th in NYC. It is very exciting, and very scary. I am, however, extremely encouraged by the attitude of the doctors today.
I am tremendously grateful to all of you who have taken this journey along side our family. It has been a roller coaster of emotions. We continue to pray that the evil disease is gone for good. We thank God every single day and night for working miracles in Canon. He is truly a testament to the power of prayer. I have a feeling some day he will do wonderful things (maybe be the doctor he talks about being after his baseball career). For now we are just happy to have him with us. He brings us joy every moment!
We love you all!!--M
Tuesday, March 29, 2005 5:06 PM CST
No HAMA results yet. I am sure they will call tomorrow. Canon is doing great! He is getting his baseball uniform on right now so he can go run the bases after Collegiate's practice tonight.
Expect some news tomorrow! Love, M
Wednesday, March 23, 2005 5:17 PM CST
I was cracking up when I read an email from Bonnie saying he needs a shirt that reads "I DO ALL MY OWN STUNTS!" So true! Canon got a new IPOD (had to be like Ryan) and has been dancing around the house with his headphones on. It is the funniest thing ever! He knows about 1% of the words to the songs, so he just yells out the ones he knows. He is becoming quite the break-dancer as well!
Okay, we are testing Thurday for HAMA and should know the results next Tuesday. We will let you know!
Love, M
Sunday, March 20, 2005 11:47 PM CST
Well, I thought it was time to make a new entry, since we are having people ask about an update. We still don't know anything new. We are going to test for HAMA again in a week. It will depend on the results of that test, as to what our next trip will involve. It could be another round of 3F8 (which is good and bad) or it could mean we are finished with treatments and will only go for scans (which is good and bad).
Again, I'm not sure how I feel either way. I know that he is looking great, he is feeling great, and is still cracking us up every day. We bought him a t-shirt the other day that reads "Not Large, But In Charge." I can not imagine a more appropriate slogan for him. He runs the family.
Love to all! God Bless!!!--M
PS--We are all sad about the Jayhawks' loss. The good thing is Canon slept right through it. He had his KU uniform on though!!
Wednesday, March 2, 2005 8:35 PM CST
A year in the life of Canon Nesmith, from diagnosis to present:
MARCH 2004—Malissa started to notice Canon’s tummy getting a fuller look.
MARCH 30TH—Canon has routine check-up with family doctor.
APRIL 2ND—Canon’s first ever CT Scan.
APRIL 5TH—Canon is diagnosed with Neuroblastoma, checks into Wesley hospital in Wichita, KS and is seen by Dr. David Rosen, Pediatric Oncologist. X-rays, bone scan, bone marrow, biopsy, Hickman catheter implanted. Bone marrow results on Friday showed cancer in the bone marrow. The tumor is estimated to be 24cm in diameter and pushing against the vena cava of the heart—inoperable at this point. Crazy and extremely scary week.
APRIL 14TH—CANON LOSES HIS EYE SIGHT. We checked into Wesley to start his very first round of chemo. That afternoon his sight went dark. He started to tell me I looked like a ghost to him. Soon after, his eyes dilated and he asked for the lights to be turned on—even though the sun was shining bright in the hospital room. My heart drops thinking back to this day. Chemo is started. The next morning Canon is sent to CT to scan his head. A suspicious spot is found and he goes to MRI. That evening about 11:30pm we get the news that he has a mass in his sinus area that is growing rapidly and compressing the optic nerve. Truly devastating. I can honestly say this was the worst night of our lives.
APRIL 16TH—Radiation is started. 15 straight days of radiation, coupled with chemo, Canon starts to see light again after about 3 days. On the 5th day of radiation, Canon can see the lines on the bathroom wall in the tile. 14 days later, Canon says his “eyes are working” again. Praise God! Canon is eating a sucker and puts his hand on his head, pulling out a handful of hair. That night we shave Canon’s, Daddy’s, Uncle Luke, and Uncle Seth’s heads. What fun for Canon!
MAY 5TH—2ND round of chemo started at Wesley hospital in Wichita. Canon checks back into the hospital the following Wednesday for fever.
MAY 26TH—Canon leaves for New York. We check into Memorial Sloan Kettering on the 27th and round 3 of chemo begins. One week later, Canon is back in the hospital with fever. His central line gets pulled (actually falls out somehow). Temp line is put in after a week of blowing veins with IV lines. Very traumatic for Canon. We meet some very special friends in the hospital, including the Wray and Vodicka families.
JUNE 16TH—Stem cells are harvested for 3 days. Good news, the bone marrow shows clear!
JUNE 23RD—Surgery is postponed due to low platelets (48).
JUNE 28TH—New central line is put in and we go back home to Kansas 3 days later.
JULY 7TH—Chemo round 4 is started in Wichita (it is good to be home). Numerous blood and platelet transfusions are given over the course of the next few weeks. His counts are extremely impacted from all the chemo. Good news is that the tumor has been reduced from 24cm to 6cm in diameter. Should be able to be surgically removed.
AUGUST 11TH—Surgery again postponed. His platelets have bottomed out at 7. He is checked into the hospital for a central line infection.
AUGUST 22ND—We leave for NYC. Surgery is finally performed on the 24th (brother Caleb’s 8th birthday). It was a success and all of the tumor (that could be seen) was removed (God Bless Dr. LaQuaglia!). 6 days later chemo 5 gets underway. This round of chemo is by far the hardest on Canon.
SEPTEMBER 2004—Canon spends the entire month in the hospital. His counts have plummeted across the board. On September 22nd, Canon is admitted to the ICU in serious condition. He is in isolation, due to his susceptibility to infection. Again, this is a very scary time. I find myself keeping his condition quiet, as to not alarm everyone. Trent and I are really the only ones who understood the seriousness of the situation. I remember Trent saying that we had come so far, and was so afraid we would lose everything here. God again blessed us and Canon rebounded after spending 5 nights in ICU. September 30th he is released from the hospital.
OCTOBER 2004—We go back to NYC in preparation for 3F8. Numerous scans are performed to make sure he is ready for 3F8. All scans show clear and his 1st round of antibodies are started. The pain is intense. My heart breaks to watch him suffer. He weathers through the 2 week treatment and we return home to begin radiation to the abdomen.
NOVEMBER 2004—Radiation is performed in Wichita. Again, it is a blessing to be able to receive treatments at home. Canon turns 4 on November 17th. It is a happy day, and his school and close friends participate in a wonderful birthday party. Crunchy the Clown, a fellow cancer warrior, entertains the entire group and bonds with Canon. We return to NYC for round 2 of 3F8. Very little pain through the treatments. We feel God has given him a little break from the suffering. HAMA is still negative.
DECEMBER 2004—A happy month! The family was together, Canon attended school, and Christmas was exciting for everyone. The entire family goes to NYC Christmas Day, and Canon starts 3F8 on Monday. He does well, some pain, but he gets into his zone and works through it.
JANUARY & FEBRUARY 2005—We are truly blessed. 3F8 treatments continue. Canon’s scans continue to be clear. Our prayers focus on keeping him clean and our appreciation goes out to everyone who has supported and prayed for us! We love you all!!!
All I can say is WHAT A YEAR! Love, M
Wednesday, March 2, 2005 10:10 AM CST
Well, today Dr. Cheung said Canon was "slightly" HAMA positive. We are going to need to do another HAMA test in about 10 days to see where he is at that time. We are not sure what the schedule will be yet. Again, everything will hinge on the results on the next test. We are in a holding pattern for now.
The one thing we have learned with cancer, is never to plan for anything. We have been extremely fortunate, however, that Canon's body has, for the most part, stayed on schedule. God continues to work miracles in him, and we are thankful everyday.
We are quickly approaching the one year anniversary of Canon's diagnosis. My, how fast a year goes! I am planning to write a recap of the year for those of you who have joined in our journey in later months. I will make that entry some time soon. Thank you all for caring!
Love, M
Monday, February 28, 2005 11:27 AM CST
Hello Friends! Canon had a wonderful weekend! He was able to attend his first birthday party of the year for his friend, Alex, who is in his class at school. I was impressed with how comfortable he was with the group of kids. He talked and teased with them as if he was part of the circle the entire year. Ms. Mattix said in parent conferences that Canon has been a part of the class discussion since the beginning of the school year, so the kids feel like they have always known him well. It is very sweet to see them accept him as "one of the guys" rather than the "new kid" at school. We also have a wonderful group of parents in his class that are supportive and very thoughtful.
Sunday was very exciting for Canon. We had so much fun cheering on the Jayhawks at the heart-stopping basketball game against Oklahoma State. What fun!! Canon was suited up and ready to go in his KU uniform, including sweat bands he got before the game. He had hands up for every free throw shot! Cayden and Canon love the "Whoosh!" part. He got a new Jayhawk warm-up suit that he wore today (with his cowboy boots) to school. How proud he was!
We will expect to get the HAMA results back tomorrow sometime. It will be very telling as to what our schedule will be for the next few months. Either way will work for us, so I am not as anxious as I have been for past results.
Love to all!--M
Monday, February 21, 2005 11:25 AM CST
Hope everyone is doing well. We don't have anything exciting to report, which I guess is a good thing. We will be doing the HAMA blood draw on Thurday and then should find out the results the following Tuesday. Again, if he is HAMA positive the treatments will be complete. We will continue only with scans every 3 to 6 months. If negative, we will be returning to New York in April.
It has been wonderful to have everyone home and do normal family things. We will be attending the last 2 KU games of the season--GO JAYHAWKS! Canon has wanted to go since the season began but has either not been home or hasn't felt well enough, so we are all excited to make the last 2 home games! We can only hope we make a good showing in the post-season tournament. Ahh, to worry about things like basketball again!!
Love to all!!--M
Thursday, February 17, 2005 2:59 PM CST
Hi everyone! Canon made it to class pictures at school today. He looked so handsome standing there in his sweater and Wrangler Jeans that he picked out. When he got home, he was feeling sick and has been napping all afternoon. I think we are fighting hard to keep from getting the flu around here, but Canon is a little more susceptible. I am hoping he will kick it soon. The good thing is that his white cells are in normal range, so he does have a line of defense.
A friend of mine emailed me a story about a mother's love. As I read it, I could not keep the tears from running down my face. It is so powerful, that I thought I would post it here for you all to read...
We are sitting at lunch one day when my daughter
casually mentions that she and her husband are
thinking of "starting a family." "We're taking a
survey," she says half-joking. "Do you think I should
have a baby?" "It will change your life," I say,
carefully keeping my tone neutral. "I know," she
says, "no more sleeping in on weekends, no more
spontaneous vacations." But that is not what I meant
at all. I look at my daughter, trying to decide what
to tell her. I want her to know what she will never
learn in childbirth classes. I want to tell her that
the physical wounds of child bearing will heal, but
becoming a mother will leave her with an emotional
wound so raw that she will forever be vulnerable. I
consider warning her that she will never again read a
newspaper without asking, "What if that had been MY
child?" That every plane crash, every house fire will
haunt her. That when she sees pictures of starving
children, she will wonder if anything could be worse
than watching your child die. I look at her carefully
manicured nails and stylish suit and think that no
matter how sophisticated she is, becoming a mother
will reduce her to the primitive level of a bear
protecting her cub. That an urgent call of "Mom!" will
cause her to drop a soufflé or her best crystal
without a moments hesitation. I feel that I should
warn her that no matter how many years she has
invested in her career, she will be professionally
derailed by motherhood. She might arrange for
childcare, but one day she will be going into an
important business meeting and she will think of her
baby's sweet smell. She will have to use every ounce
of discipline to keep from running home, just to make
sure her baby is all right. I want my daughter to know
that every day decisions will no longer be routine.
That a five year old boy's desire to go to the men's
room rather than the women's at McDonald's will become
a major dilemma. That right there, in the midst of
clattering trays and screaming children, issues of
independence and gender identity will be weighed
against the prospect that a child molester may be
lurking in that restroom. However decisive she may be
at the office, she will second-guess herself
constantly as a mother. Looking at my attractive
daughter, I want to assure her that eventually she
will shed the pounds of pregnancy, but she will never
feel the same about herself. That her life, now so
important, will be of less value to her once she has a
child. That she would give herself up in a moment to
save her offspring, but will also
begin to hope for more years, not to accomplish her
own dreams, but to watch her child accomplish theirs.
I want her to know that a cesarean scar or shiny
stretch marks will become badges of honor. My
daughter's relationship with her husband will change,
and not in the way she thinks. I wish she could
understand how much more you can love a man who is
careful to powder the baby or who never hesitates to
play with his child. I think she should know that she
will fall in love with him again for reasons she would
now find very unromantic. I wish my daughter could
sense the bond she will feel with women throughout
history who have tried to stop war, prejudice and
drunk driving. I want to describe to my daughter the
exhilaration of seeing your child learn to ride a
bike. I want to capture for her the belly laugh of a
baby who is touching the soft fur of a dog or cat for
the first time. I want her to taste the joy that is so
real it actually hurts. My daughter's quizzical look
makes me realize that tears have formed in my eyes.
"You'll never regret it," I finally say. Then I
reached across the table, squeezed my daughter's hand
and offered a silent prayer for her,and for me, and
for all the mere mortal women who stumble their way
into this most wonderful of callings.
(Thank you Rhonda!) Love to all!--M
Sunday, February 13, 2005 11:22 AM CST
Hello Friends! Canon and Trent made it safely home on Saturday. Canon looked so sweet running down the ramp to us at the airport. He just kept say "I'm so glad I'm home!" So were we!
He had such a good second week. I believe that all the prayers helped Canon ride out the 3F8, as his pain was very little--if at all. He was able to sleep through most of the second week of treatments. He was up and ready to go after his infusion was complete. He felt good enough to go back to the playroom after treatment, which he rarely feels well enough to do. It gave Canon and Trent a chance to go shopping and have fun with Ryan and Missy in the evenings. I understand they had quite a night at Bubba Gump and Toys R Us. It is hard for us to leave them this time because it is uncertain when we will see them next. (see Ryan's site below)
Now we wait for the HAMA test which will be done in 2 weeks. If he is HAMA positive at that time, his course of treatment will be complete. We will monitor him with scans every 3 to 6 months. If he is HAMA negative, we will return to NY in April for round 5 of 3F8. He will continue on treatments at 8 week intervals until he is positive. I must say that the thought of his treatments being over is both exciting and extremely frightening. The relapse rate is very high with neuroblastoma. I know that it is all in God's hands and all we can do is be thankful that his body has responded the way it has, and pray that he will be one of the miracles that is able to fend off this horrible disease.
Canon is looking forward to his class Valentine's Day party on Monday. He is working this afternoon on his Valentine cards for his classmates. How nice it is to get back to a "normal" life for a while!
Love to all!--M
Wednesday, February 9, 2005 2:55 PM CST
Wednesday is in the books. We got to the hospital at 8:30 a.m., out by 2:00 p.m. Canon slept through the treatment, and woke up as if nothing had happened. The doctors and nurses suspect his hama level is close. Tomorrow they are going to draw blood for research purposes. We will continue the 3f8 through Friday. Canon's platelets bounce from the mid 50's to low 40's. "like a weather report"
The thing with Canon, is that a hama draw in two weeks will tell if he will be done with the 3f8. Although pain is a indicator of not having a hama, it is not decisive. The majority of Canon's second session, back at the end of November was painless.
Keep praying for Ryan, this guy is strong and determined. Missy V. has provided Canon with "tlc", she means alot to us.
Trent
Tuesday, February 8, 2005 3:43 PM CST
Canon had very little pain today, but was mad at the nurses because he could not get as much "sleepy medicine" as usual. He was able to go back to the playroom after 3F8, which he never does. He usually has to go back to the Ronald McDonald House and sleep off the pain medicine for the rest of the day.
The 3F8 treatments have seem to be a little easier on him since his big meltdown day last Thursday. I truly believe that it was the concentrated prayer efforts, that have given him slight relief from the pain in the past few days. Thank you all for focusing your prayers Canon's way.
We now have a friend in NY that needs some concentrated prayers his way. Ryan from Nebraska has been like an uncle to Canon and Canon is extremely attached to his mom, Missy. Please support this family with your thoughts and prayers as well, as they are going through a very difficult time right now. Ryan's link is on the bottom of this page if you would like to read about him and his wonderful family.
Love to all!--M
Monday, February 7, 2005 3:02 PM CST
Thanks to everyone for the weekend's, and Monday morning thoughts. Week two started with a new iv in the hand. Canon slept through much of his treatment. He complained briefly of stomach pain. He usually sleeps most of the first day, and through out the night. The weekend weather was superb, Canon, myself, and Ryan from Nebraska(check his link, big week for him) went to Soho. The three of us went to the Apple store " the Apple computers and Ipod etc." and had a blast playing with all the gadgets and listening to music. Canon loves to listen to music, and if he hears a good beat, he gets his roll on. People just crack up, "think of Steve Martin, wild and crazy guy". We had a late lunch at a Cuban diner, on the corner of Prince and Elizabeth street. Canon looks forward to seeing everyone soon.
Trent
Friday, February 4, 2005 5:52 PM CST
Hello to everyone, this is the first entry by Canon's dad. The first week is over for the fourth session. Thursday was Canon's first official meltdown. Today we had a pre-game talk (more like bribery "$$$"). He did not complain or fuss at all. He actually ate a peanut butter and jelly sandwich during the pain time of the infusion. He refused to lay down until his sandwich was finished. He told his nurse that he was going to be tough until he ate it all. There are no words to describe what these kids go through, even when you are by their sides, or outside the room looking at the wall and told not to move a muscle, as the case is with Canon. One time during our third session a lady came by to read Canon some books. Kat, his nurse had just started the 3f8 infusion, the lady reading the book was unaware of her timing. I was well aware that within a few moments that the pain would start. I was confident that Canon, would insist that she leave, and have nothing to do with anyone for the next 15 or so minutes. What he did next was the bravest thing I personally have ever seen. Canon layed on his side with his hand propped against his head. I watched as his face became flushed, and tears well up in his eyes, and the determination he had not to show her what he was experiencing at the time. He fought back his impulses to scream in anger or agony. It amazed me how he showed this lady the courtesy for her to finish the story, as he waited page by page, put his name on the book, and take it from her. I was never more proud, and never more ashamed for any thing that I have experienced where I thought I was suffering. Take care and Canon and I look forward to reading your thoughts.
Trent
Thursday, February 3, 2005 1:00 PM CST
Not a good day for our Canon Ball today. He took his infusion of premeds fine, did finger stick fine, played in the playroom for a couple of hours. However, when it was time to start 3F8, the MONSTER within surfaced!
Canon decided he was done with this 3F8. Before they hooked him up, he began screaming he didn't want to do it today. He even regressed to biting Daddy and told the nurses to "Please get out!"
Like I told Trent, it is surprising that this was his first outburst. I have continued to be amazed at how he goes in on a daily basis and knows what is coming, but doesn't put up a fight (until today). It makes me sad to think of him so upset. I really am praying that his pain will be minimized for the remainder of this round. It is hard for me to hear about his pain and not be there.
Sometimes you just want to say enough is enough. The only consolation is that we know this treatment is necessary to keep this evil disease away. It is just so hard to experience it. My poor baby Canon is so, so BRAVE! I think he is stronger than Mommy is most of the time, thank God!!
Hopefully tomorrow will bring better news and a better day. Love to all!--M
Tuesday, February 1, 2005 4:57 PM CST
Canon had pain today. :(
Yesterday he was able to sleep through the 3F8, which seems to be his routine. However, today was very intense and centered mainly in his lower back. As always, he weathered through and was taking a nap when I talked to Trent earlier.
Canon slept until midnight last night and woke up hungry. So, what do you do in New York City when you are hungry at midnight? You walk out the door and go eat. Trent said they finally went to bed for real at about 3am. Those crazy kids!!
Love to all!--M
Sunday, January 30, 2005 11:00 PM CST
Well, the boys made it to New York--ready for 3F8 to start tomorrow. They are starting their little routine. It was hard to see them off. The good news is they will only be gone for 2 weeks this time, and then will have an eight week break.
He was so cute last night because I said I was so sad that my little Canon Ball had to go back to NY the next day and he said "it's okay Mama, I'll sleep next to you tonight." He was trying to comfort me. He's so strong!
I am going to post some pictures from his school activities last week, so take a look if you have time!
Love to all!!--M
Wednesday, January 26, 2005 11:01 PM CST
We are having another great week with Canon. He had such a wonderful day at school today. It was "Pioneer Day" in celebration of Kansas' birthday. Of course, Canon wears pioneer clothes every day, with his hat and boots. But, today we added a bandana and he was good to go! So much fun! They made butter by shaking cream in jars, ground up corn, learned about some chickens, and had a nice musical group from Cow Town perform for the kids. I was so happy Canon was able to attend! He was feeling great.
We received HAMA results and he is still negative and still on course. Good news! Canon and Daddy will be off on Sunday to the Big Apple for 2 weeks of 3F8. We continue to pray for minimal pain, and that the HAMA level will be reached at the right time for his body to defend itself against this evil disease. He is winning the battle, with your prayers and God's grace!
Love to all!--M
Saturday, January 22, 2005 0:03 AM CST
What a fun day Canon had on Friday! He had a field trip with his class at school. Ms. Mattix's class took it's annual trip to the Great Plains Train Museum. He pulled the rope and rang the big bell on the HUGE black steam engine. He was able to climb up high in the caboose and sit in the conductor's chair. The weather was nice enough to see most of the cars, before going inside for a snack and train story.
Again, the feeling of seeing Canon do "normal" things with the other kids is truly hard to express. I couldn't take my eyes off of him sitting with his class eating his snack and listening to Ms. Mattix read the story. My advice to any parent is this... Never take for granted the small, everyday things. Each moment is precious--no matter how uneventful it seems! Love your babies, whether they are 3 or 23, and appreciate every smile and giggle they display. They are truly a gift from God!
Have a wonderful weekend!! Thanks for stopping in! Love, Missy
Wednesday, January 19, 2005 9:53 AM CST
Good news! Canon's test results are back and everything looks great. It is always a relief to see that his body is staying clear of this nasty stuff! He is on course for his 4th round of 3F8 to start in about 12 days. It seems like they just got home, and now I am booking tickets for them to fly back. The nice part is that we will get an 8 week break after this round.
Canon went to school today decked out in cowboy boots (of course), his black Stetson hat, and a new belt with a big silver belt buckle. He looked so handsome! A true cowboy!
Love to all!!--M
Monday, January 17, 2005 0:12 AM CST
I forgot to update everyone on the next course of treatment. This Thursday we will be testing for HAMA. If he is HAMA negative (which we are hoping for), Canon will be heading back to NY on January 30th. He will get his 4th round of 3F8 for two weeks. After the 4th round, we will be hoping for the HAMA test to go positive. The treatments will go from 3 week intervals to 8 week intervals, until he hits a positive HAMA. Upon hitting HAMA, his treatments will be complete.
The 8 week break will allow Canon to get back into the groove of school and start spending a lot more time at home. We are excited about Canon staying on course with his treatments. However, we remain cautiously optimistic, due to the aggressiveness of this disease. All we can do is continue to pray, and thank God for his blessings. Love, M
Sunday, January 16, 2005 11:56 PM CST
Canon and Trent made it home on Friday (on time)! We have had a nice weekend together. Caleb and Cayden missed their little brother tremendously. They have enjoyed playing and wrestling with him. Canon is completely free of any lines now, so we are able to allow the boys to be a little more crazy than normal. His platelets continue to remain low, so we still must be a little careful when it comes to bruising.
The weather has been very cold, with a lot of ice still around. Canon is itching to get out on his 4-wheeler. We are supposed to get in the 50's later in the week, so he will be happy to get out of the house. We have left the Christmas tree up for Canon to enjoy longer. Hopefully, he will allow us to take it down sometime this week. Who knows, it may become a Valentine's tree before long.
Thank you all for your continued prayers and support. We are extremely thankful for the miracles that God is working in our little Canon Ball! Love to all--M
Friday, January 14, 2005 1:54 AM CST
Well, Canon and Trent are stuck in New York. The flights through Chicago were all cancelled on Thursday. It was extremely disappointing not to have them home. They are rescheduled for Friday, so we are praying for good weather.
Instead of a long travel day, Canon spent the afternoon in Missy from Nebraska's room, watching "Dodgeball" and taking a nap. It is so comforting to know I have the "other" Missy there for Canon when I can not be. We will all miss each other when Canon and Ryan finish treatments! Say an extra prayer for the Vodicka family, as they have become a special part of our lives.
Keep your fingers crossed for clear skies on Friday!! Love to all!--M
Tuesday, January 11, 2005 0:26 AM CST
Canon and Trent made it safely back to New York after spending a relaxing weekend in Alexandria, VA. They had a nice time with Aunt Brookie and Uncle Bart. Canon is counting down the days until they come home. We had an arguement on the phone tonight as to whether it is 2 or 3 more days. Either way, everyone is excited!
Our power is back on in Kansas (almost a whole week without electricity). Yea!! Canon was singing "I got the power!" to us on phone--he loves that part in the movie "Bruce Almighty." His newest quote that he seems to throw in at any chance is "What's in YOUR wallet?"
Canon has his CT scan tomorrow and is very motivated to lay "stiff as a board" while he moves in and out of the machine so that he can eat. The days he requires sedation are torture on him because he is such a big eater. The nurses know that he has to have his Big Breakfast Deluxe from McDonalds, or he is just not himself!
I will never forget the day he had bone marrow tests and sat and sniffed the Milky Way bar that he was going to eat when he woke up. He was wheeled into the procedure room balancing the candy bar on his bald head. I made sure it was right next to his eye, so he saw it first thing when he came out of sedation. So funny!
I will try to rotate some new pictures tomorrow. Have a good rest of the week! Love, M
Sunday, January 9, 2005 5:48 PM CST
Canon and Dad are having a fun weekend in Alexandria, VA. They took the Amtrak down Saturday, since the scans are not scheduled until Tuesday. Trent's sister, Brooke, and her husband, Bart, live in a beautiful area of Old Town Alexandria. Canon has been there a few times. However, this will be Trent's first visit. Canon has become quite the traveller--planes, trains, and automobiles! Who would have thought this little boy from Kansas would become an expert at hailing taxi's in the big city?
Caleb, Cayden, and I are still out of our house with no electricity (day 6). Uncle Luke has graciously let us crash in on his apartment, but it is very difficult being out of our house. The down line still lays in the field behind our house, so I don't think we should expect the power soon. Oh well, things could always be worse, right?
Love to all! Have a good week. We continue to pray for good scan results this week. God Bless!!--M
Thursday, January 6, 2005 4:58 PM CST
The boys have been busy today! Canon was feeling good and having a banana fit (see Missy from Nebraska's guestbook entry). So funny! After the hospital they went to Bubba Gump, ESPN Zone, Niketown, and Trump Tower. I guess Dad is pretty fun when I'm not around! I was happy to hear that Canon was up for an afternoon on the town.
His platelets continue to give us problems, as they do not want to kick in. They have stayed around 20 since the last shot of chemo (before Labor Day weekend). He received a transfusion of platelets today--but then was ready to hit the road!
We at home are still out of power (day 3). I hope all the weather clears off and the ice is gone before the guys fly home next Thursday.
Thanks for all the thoughts and prayers! Love, M
Tuesday, January 4, 2005 5:23 PM CST
Two more days down of 3F8. The pain this week seems to be quite intense (in a good way, I guess). We are praying for good scans next week. Canon is doing well and having fun with Daddy. Our friends (Missy from Nebraska) are back at the Ronald McDonald House, so Canon was excited to see them. He likes to make late night runs up to their room for candy!
I am still battling with posting photos on this new web page. I will try to get them on as soon as I figure out how to resize without making them blurred. Any computer advice would be appreciated! :)
Love to all!--M
Monday, January 3, 2005 1:28 AM CST
We are so excited to start a healthy and happy NEW YEAR!! We are looking forward to 2005, with much faith in God and hope for Canon. As many of you know, we have been through quite a year. We are happy to be going into 2005 with Canon doing well and moving forward with the 3F8 antibody treatments.
Our family spent New Year's Eve in the Big Apple. The kids had so much fun and it was nice to be together for the holidays. Canon will be in New York with Daddy for a couple more weeks to finish 3F8 and conduct his 3-month work up. We are praying for continued good news on the scans.
The doctors are continuing to keep an eye on Canon's HAMA level. This next HAMA test will determine our schedule for the start of 2005. He has been quite inconsistent with his levels of pain. This round (his 3rd) has proven to be one of his most painful, except for the first day, in which he slept right through. We shall see. I continue to be impressed with his ability to weather through the infusions. He knows the drill, and makes sure the nurses are giving him his "sleepy medicine" at the right times.
I can't thank everyone enough for the wonderful support and, most importantly, the prayers for Canon. We are blessed to have all of you as friends. Happy New Year!
Love, Malissa
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