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Monday, January 1, 2007 10:56 AM CST

Happy New Year.

James, Sarah, and I celebrated New Years eve by staying up late and watching movies and eating. James loves life, and I try to help him embrace each moment, never knowing what the future holds for any of us.

In one week, we will be celebrating our "New Year." Or, maybe new life...Three years of cancer free living on January 8th.

Here is what I wrote that day three years ago:
*********************************************
Today was the BIG DAY!

They began Sarah's apheresis around 10:00 am. They took blood out of her leg and spun it in a centrifuge, which knows how much stem cells weigh. They separated out the stem cells and returned the rest of the blood back to her. Her entire blood volume went through the machine (not all at once!) 4 times.

Sarah's catheter clogged an hour into the procedure--she had formed a clot. So, they had to use a clot busting drug (plus lots of prayers from our church family). An hour later, it was going again. They had warned us that it may take another collection tomorrow, but we got it all done today. They needed to collect 2 million cells, but ended up collecting 3.4 million. WOW!! Great job, Sarah!!!!!

At 5:00, Jim, Sarah, and I got to watch Sarah's cells being delivered into James through his port. It was quite emotional for me. I may have given James life, but in all liklihood Sarah is saving his life. I wonder who will be the most spoiled in our family from now on?

The staff all love Sarah, especially James' doctor. They are all laughing about the girl who spent the night sleeping in her crown and holding her septer.

Now, we wait 2 weeks for the cells to engraft.
****************************************

We all know now how it turned out. The cells engrafted and so far are doing their job.

And, yes, Sarah remains the most spoiled child in the family.

Thank you all for your prayers and support through this journey,
Patti

Tuesday, October 24, 2006 4:39 PM CDT

In January last year, I began at annual tradition, Tyler's Day. Tyler was a beautiful five-year old boy who we met thru our cancer journey. Tyler's mom, Tracy, took the time to help me thru my struggles, even though hers were bigger. You see, my son had a reasonable prognosis, but the cancer that had invaded little Tyler had no good cure. Tyler died shortly after my son had his bone marrow transplant.

So, in January, I challenge all my friends to do something great in Tyler's honor. I want to make the anniversary of his death a positive time for his family. And, in January, we also will celebrate three years of cancer-free living for James.

Last year, for Tyler's Day, we collected 4 huge boxes of art supplies for the Children's Hospital of New Orleans, which had been flooded by Katrina. It is hard to be a kid in the hospital with nothing to do, but at least in Chicago or St. Louis, there are many donors. In New Orleans these days, I am afraid (but don't know it for sure) that many dollars are going toward the restoration of the city and homes, and not toward the hospitals and children.

So, in honor of Tyler's Day, my birthday, and my son's anniversary, I am collecting donations once again for the Children's Hospital of New Orleans. They have told me that they had over 20 playstation 2's and games before Katrina. Now, they are down to 3.

So, we are collecting new and used playstation 2 and playstation 2 games. If you would like to donate a system or donate to the purchase of one, please email me.

Thanks from me, and the kids stuck in the hospital in NOLA.
Patti

Friday, October 13, 2006 5:44 AM CDT

Okay, I am in "trouble" with a lot of you for not keeping this updated. I have no excuse. I just needed a bit of a break from the world of childhood cancer.

James continues to do awesome. He is in 3rd grade this year and loves his teacher. He seems to be doing well in school, although at times he lacks motivation to do a good job.

James had a CT scan last week, and the results were good. That and his labs continue to be normal. I think the doctors continue to be amazed at his lack of complications from his bone marrow transplant. Of course his sister takes the credit and demands gifts, because her blood is working so well.

The other exciting news is that we are adding to our family. Over the summer, we were relicensed as foster parents and are in the process of adopting a four-year old girl. More on that as it develops. (She has been living with us since July.)

Since the last update we have also added pets: 2 rabbits (a 4-H project for James) and a kitten.

I'll try to update more often,
Patti

Thursday, July 27, 2006 7:45 AM CDT

I have been lazy about updating! Sorry. We have had a busy summer. Here is the column I wrote for our paper when James returned from camp a few weeks ago. Enjoy.


All of you farmers “owe” me.

In June, LeRoy received only slightly over an inch of rain. Last week, I sent my son, James, to camp, and we received more rain during that week than we did the entire month of June. As I remember, that happened last year when he went to camp, too.

When I picked him up this year, I expected he would be disappointed by having to spend much of the week inside. Instead, I found out the camp staff knew how to have fun, despite the rain. I picked up a very happy and muddy eight year-old boy with several wet bags of muddy laundry.

The shorts he was wearing when I picked him up were covered in dirt. I wasn’t exactly sure which pair of shorts they were actually, because I couldn’t tell what color material was under the caked on mud. “Why didn’t you put on clean shorts this morning?” I asked, knowing that I had sent plenty of extra clothes this year.

“Oh,” he said. “These are just a little dirty from when I was rolling around in the grass yesterday.” “Yesterday?” I asked. “Why didn’t you put on clean clothes today?” “But, Mom, I only wore them for five hours yesterday,” was his reply.

Since we were on the subject of hygiene, I figured I better ask. “Did you shower this year?” I asked, remembering his one shower in six days last year.

“Twice!” was his proud reply. “Did you use soap?” I asked. “The second time I did,” he said smiling.

Good thing it is called Camp COCO (Children's Oncology Camp Organization) and not Camp Good Hygiene.

Actually, I am happy that although the campers all have cancer or have had cancer, they are treated to a “normal” camp experience. My friends with “normal” kids all tell me that showering is not something that their “normal” kids do at camp.

In other ways, though, the kids at Camp COCO are pretty special. James and his friend Alex were only at camp for 5 minutes last year, when they both had their shirts lifted and were comparing surgery scars and recovery tales. Not exactly what you would see eight year olds doing at a typical summer camp.

And, kids that have to take lots of medicine or get their blood tested are typical at Camp COCO. And, if the medicine makes them sick or gives them mood swings, their cabin mates understand.

At Camp COCO, James gets to enjoy swimming, fishing, boating, horseback riding, arts and crafts, archery, nature hikes, visits from Illini sports stars, games, and campfires. In between activities, it isn’t uncommon to find the kids in their cabins, discussing their cancer experience with kids their own age. James and his friend Alex discuss what a relapse would mean to them, something that they don’t seem to be comfortable discussing with their parents or their “normal” friends.

Camp COCO is funded by donations, and there is no cost to the campers. Since Camp COCO has brought us much needed rain the past two years, if you would like to make a donation to the camp, you can mail your donation to Camp COCO, c/o SIU Foundation,
P.O. Box 19666, Springfield, IL 62794-9666.

Next year’s camp will have a jungle theme, and James has already excited about attending. So, no need to buy a Farmer’s Almanac. You can plan on getting plenty of rain for your crops in 2007 during the second week of July.

Wednesday, June 21, 2006 12:12 AM CDT

These journal entries used to be full of medical details, and recently, they have been full of my thoughts. When I look at them on the screen, I’m not sure which seems scarier.

We continue to pack our days full of activities, with little time for me to actually sit down and write these entries.

Friday begins Relay for Life, and we are planning on camping out there and staying the entire 24 hours. There are some fun themed laps, like a monkey lap, but that is at 4 am. Still, I know my monkey boy will want to join in the fun for that one. Afterward, James has baseball and a birthday party.

Sometimes it seems as if we are trying to cram a lifetime of fun into each day. I wish sometimes that I could be complacent again. Sometimes I long to say, “no” to an activity, without the thought that I might regret that later.

Most of the time, though, I am happy that each day I remember how short and fragile our lives are. It helps me to live and love each day.

Lovestrong,
Patti

PS If anyone wants to join us out at Relay for a lap or for a little fun, email me. I will let you know where we will be!

Saturday, June 17, 2006 6:54 PM CDT

Perseverance


I got a lesson in perseverance today.

We were at the Walk for Wishes, a fundraiser for Make-A-Wish. The walk was three miles around a track, a short distance for parents, but a more challenging walk for our three children. At about 2 miles, Sam and Sarah had enough, and they decided to watch the rest of the walk from the shade. James, on the other hand, decided that he could not only walk the last 4 laps, but he wanted to run the last one. Looking at his brother and sister sitting on the sidelines, he commented, “They just have no perseverance.”

I smiled. The way he approached the walk was the same way he approached his battle with cancer. Often, I sat on the sidelines, absolutely fatigued, while he ran laps around the track. He persevered, and we all won.

However, it is not James’ picture that should be in the dictionary next to the word, “perseverance.” Instead, that honor belongs to the Amazing Jacob. I met Amazing Jacob through his caringbridge website over a year ago. At the time, Jacob was five years old and had a brutal form of cancer, with an even more brutal prognosis. When he was diagnosed in Febuary 2004, doctors said he had a 10 percent chance of living 9 months. Instead, he lived strong for 28 months, before his death this week. Jacob’s doctor said that Jacob was probably the longest survivor with unresected and active ACC tumors.

I followed Jacob’s story as he persevered. He would get sick, be in ICU and not expected to live, only to recover and be at Disney the following month. I watched as his family persevered, believing in God and his power, while at the same time facing things that no parent can even imagine. Jacob and his family truly define perseverance.

Despite his death, I believe Jacob persevered. He is now in Heaven, and he no longer has tumors. Now, his parents must persevere on earth. I cannot imagine having the strength to go on after losing a child. When James was sick, we had to go on with life. We had to go on, for James, and for our other children. But, after losing your child, how do you go on? I think each day must be a struggle, and each day Jacob’s parents and brothers will need to remember Jacob’s strength, so that they may too persevere.

Hug your kids, your grandkids, and your friends’ kids. Then think about this…What could you accomplish if you had Jacob’s determination?

Patti

P.S. Please visit Jacob's website and sign his guestbook. His website has over 2.7 million hits. That is one inspiring little boy. http://www.caringbridge.com/fl/jacob/

Tuesday, June 6, 2006 8:57 PM CDT

Okay, so I found out some people actually do appreciate reading about our everyday lives.

On Saturday, we all went to the Peoria Chiefs baseball game. Afterward, James and I camped out with area Cub/Boy Scouts. It was an awesome time. We camped in the outfield and didn't get much sleep. James had fun making new friends, playing baseball, and running and sliding. I mostly sat and watched (because it is good for him to learn to interact with kids his age versus his mom). It was one of those moments that I wish I could freeze for eternity. One that I won't need pictures to remember. One where I allowed myself to once again experience pure joy, without the fear that sorrow and pain would soon follow.

We are also enjoying swim lessons and baseball season. Thanks to a VERY AWESOME COACH, James is doing a lot better this season. He is getting hits, and actually doesn't miss every ball that comes to him.

I have heard that my last posting was "inspirational." Believe me, I try to go for laughs. Inspiration is usually the last thing that you will get from me. Today's inspirational moment is a bit crabbier.

I walked through a group of people today, and I overheard one telling another about me. Now, it would have been so cool to overhear them say something like, "She's the one that writes those super articles in the Journal that we read every week," or "Have you heard what a nut case she is? She rides a skateboard down her driveway and even rode into traffic last week!" Instead, I heard something about our "poor family" and our "poor son" who had cancer.

Please do not define who I am or who my son is by the battle we fought and won. We are not victims. We survived. If I let cancer define who I am, then I give it power, and I will no longer let it have any power in my life. I am not happy that James had cancer, but our pain gave us strength.

If cancer had not come along, I would not have run through the sprinklers in the infield, even though they told us not to. (Okay, we didn't do that, but only because it was too cold.) The pre-cancer parents would have refused to take James to a camp-out at a baseball field, knowing that we wouldn't get sleep. The post-cancer mom happily took him, realizing she would get more sleep that night than she did for the 2 years they fought cancer.

Define me (and James) as ones who livestrong and lovestrong,

Patti

PS Please stop by Miss Banana's page to wish her a HAPPY BIRTHDAY!!!!
http://www.caringbridge.org/canada/julianna

Thursday, June 1, 2006 8:15 AM CDT

Sometimes it is hard to know what to write in these updates. So, they stretch further and further apart. We stay busy doing normal and typical family things, and I wonder why anyone would want to read about that?

James continues to do well. He is very excited to be done with school for a few months. We have a lot of normal plans for the summer: baseball, swimming, camping, Cardinal and Chiefs games, etc. And, the non-normal, appointments at Childrens in St. Louis, scans, and check-ups with Dr. M.

June continues to be a difficult month for me. It has been three years since the “war” began. In the early days, I remember wishing that I could go back and have one “normal” day again. One day where the word cancer didn’t run through my mind. One day when I worried about something silly, like whether or not I should let James have the puppy he wanted. One day when I could watch him do something and not wonder if that would be the last time I would see him do that particular thing.

To be honest, I don’t long for those days anymore. I can’t even remember what it was like to live a “normal” life. I think now that I was sleepwalking through life in the pre-cancer days. I took things for granted. I put off doing fun things with the kids, because I had my own things to do.

Now, I know the depths of emotion. I have experienced great pain and great joy. I am finally awake, and I can never go back to sleeping through life again. We stomp in every puddle (even on the way to school), eat cotton candy whenever we get the chance, and look at the stars every night the sky is clear.

My wish for all of you is to wake up now. Live life. Don’t wait until it forces itself on you.

Off to play in the rain,
Patti

Wednesday, May 17, 2006 8:34 PM CDT

Another update! James had a good dr appointment this week. His eyes are doing well, despite the fact that the radiation he received is almost guaranteed to give him cataracts. So far, he shows no signs of them or decreased vision.

James became a Bear tonight at Cub Scouts. He is very excited about a Boy Scout Camp Out this summer at his beloved Chief's Stadium, following a game.

New photos on the photo page.

More soon,
Patti

PS James' team in training fans--we want to hear about your race and see photos! Email us!

Saturday, May 6, 2006 7:53 PM CDT

I have been getting "grief" about not updating James' webpage, so I thought I better get this done.

We have been enjoying 2 months between doctor's appointments. This is the first time in 2 1/2 years that we have gone two months without taking James to the doctor. It is pretty nice.

James is counting the days until the end of school. So far, it looks like it will be a busy summer, with baseball and Camp Coco (Children's Oncology Camp). We are also looking forward to the Relay for Life and camping out at the Relay overnight. We may also do a fundraiser for Alex's Lemonade Stand (Pediatric Cancer Research) at our town's Summerfest.

On a sad note, James' grandmother (his Dad's mom) died a few weeks ago. James got to go see her in California over Easter break, and I am very glad for that. We will really miss her.

More later, I promise!
Patti

PS We are trying to raise funds for our Relay For Life team. If you would like to donate online, visit James' Relay for Life Page.

Thursday, April 20, 2006 6:55 PM CDT

Sorry for the long time between updates. James grandmother is very ill, and worrying about her has consumed our time. Please pray for her recovery.

James will join his friend Alex tomorrow at the ISU Relay for Life. We plan to sleep in tents on the ISU Quad. Should be interesting.

I will post photos!
Patti

Thursday, April 13, 2006 7:04 PM CDT

James is in California with his dad. They went out to visit his grandmother, who just had surgery and isn't feeling too great.

James called me and told me that he ate 5 meals today! He was very proud of himself.

More later,
Patti

Sunday, April 2, 2006 6:04 PM CDT

We had a great spring break week. It was beautiful weather, so we spent a lot of time outside playing in the sun. (Yes, with lots of sunscreen on already!)

Please join me in congratulating my 2nd favorite cancer survivor, Julianna. She just finished 2 years of chemo and is in remission. Of course, now she is going to Disneyworld! I am so excited for her and for her family. Her dad writes her journal, and he has given me so much to laugh and cry about.

Please visit them and post a message in her guestbook.
http://www.caringbridge.org/canada/julianna

(I'm too lazy to do the html today)

Patti

Friday, March 24, 2006 10:58 PM CST

Just a quick update to let everyone know that James did an awesome job tonight. They had to get him a chair to stand on to reach the microphone. The auditorium was packed, and I think it holds 3,000. The fraternity boys chanted, "JAMES, JAMES, JAMES..." when we went up there. It was very fun for James.

I don't remember much about what I said. I was trying to keep James from tumbling off the chair! I remember some laughter (at the right times, I think) and cheering, so I guess it was fine.

More when I get less sleepy,
Patti

Wednesday, March 22, 2006 8:30 PM CST

We had a great night. We went to a fundraising event held by one of the Leukemia and Lymphoma Society Team in Training runners. We met a lot of super people, including the nice lady with James above, who is running in James' honor. Hopefully, if the weather is nice, James will be able to go "train" with them some Saturday.

James will be speaking to 2,000 university students on Friday night about his Make-A-Wish experience. He and I would both appreciate your prayers. James is not a public speaker, and I have never been in front of that many people!

Thanks for checking on us,
Patti

Tuesday, March 7, 2006 8:43 PM CST

James tests were all fine! Yippee! Well, we do not have final results on the echo, because they send it to Peoria to have it read.

They took 4 tries to get the iv in for the CT scan. That's 3 more than mom would have allowed had I been there.

Then, he needed his MMR shot. Poor guy.

Sunday, March 5, 2006 7:37 PM CST

James has his CT scan, echocardiogram/EKG, Pulmonary Function Tests, and labwork on Tuesday. InSCANity has started to hit me. Those of you who are "cancer parents" will understand what I am talking about. I'm sure things are fine, but always in the back of your mind, you fear the worst.

We have been doing a lot of Make-A-Wish appearences.

On Friday, we went to the Ronald McDonald House that was Tyler's and delivered an SUV full of supplies.

More later,
Patti

Tuesday, February 21, 2006 7:11 PM CST

We have been passing around sickness in our house for the past month. Sarah and James have either had colds or stomach viruses. James missed school today, and I hope he can return tomorrow.

James spoke last night at a Make A Wish event. He did a great job. I controlled the microphone this time! We just got asked to do a speaking engagement for ISU, and the auditorium is expected to be full. I am happy that we can promote Make-A-Wish, since we had such a magical time on James' wish adventure.

Tomorrow I will be mailing several boxes of art supplies to the New Orleans Childrens Hospital that we collected on Tyler Day. On March 3, we will be going to Ronald McDonald House in Chicago with a van load of stuff we collected for them. I am so excited that we collected so many things in memory of our friend.

More soon,
Patti

Friday, February 17, 2006 5:28 PM CST

Once again, it has taken me a while to update. Sometimes it is hard to know what to write. I'm not speechless, don't worry! I spend a lot of time researching and writing articles for our local paper, and sometimes I am just tired of writing by the end of the day.

James has been a bit sick with a cold, but managed to make it to school every day this week. Now, Sarah is sick with a stomach virus.

James has his yearly checkup, including CT scan, echo, bloodwork, PFT, etc. in early March. I am going to attempt not to let inSCANity take over this time.

More Soon,
Patti

Tuesday, February 7, 2006 7:33 AM CST

James continues to do well. We have been spending a lot of our free time going to movies, going swimming (we got a health club membership for Christmas), and bowling! We went to a Relay for Life kickoff that was a bowling party. James had a great time. Of course, we did another media interview, which you can see here.

I have to admit I have had some dark days lately. Some have suggested it is Post Traumatic Stress. I'm not sure, but when I checked on Julianna Banana the other day, her dads post really touched me.

Here is an excerpt:
"I purposely do not talk about my spirituality on here. I can’t look you in the eye and preach the details of my beliefs, as I don’t completely understand them myself. I can’t reconcile the purpose of so much hurt behind the tremendous losses of people like Chris. I can’t begin to get my head around how it could possibly be a holy act to take a child from a parent like the woman dad met at Costco. People have shared their beliefs with me, and I have heard the earthly explanations of what is supposed to be heavenly intents. But I just cannot find it in me to accept it. And until I find a way to reconcile that, I will undoubtedly struggle in this limbo between faith and resentment.

Around this same time last summer, I came to a realization about myself that I didn’t want to believe. I am not actually one of “the strong ones”, but rather I am one of “the weak ones” trying desperately to be strong. The God’s honest truth is that I haven’t had a tear-free week in two and a half years!"


Wow, thanks Terry, for summarizing in words what I have been feeling for a long time.

Thanks for checking on us!
James' Mom

Sunday, January 29, 2006 6:00 PM CST

Thank you to everyone who participated in Tyler Day. I received lots of emails, and I plan on putting them together to give to Tyler's parents next month. It will certainly be an annual event, and I plan to start much earlier next year!

We are still collecting items for the Ronald McDonald House. We plan on taking them up and doing volunteer work at the House at the same time. So, if you want to donate an item (snacks, paper products, etc.), I am starting a collection in my entryway. We will probably go mid-February.

Also, we are collecting art supplies for New Orleans Children's Hospital. They were flooded by the hurricane. If we have enough, I may drive those down to New Orleans and do volunteer work down there as well. I am still trying to determine if it is "safe" in New Orleans for James, given the high mold counts, etc.

More Later,
Patti

Monday, January 23, 2006 5:43 PM CST

THE RESPONSE SO FAR HAS BEEN AWESOME! KEEP IT UP!!!

UPDATE: WE HAVE TWO PROJECTS IN THE WORKS: WE ARE COLLECTING ITEMS FOR THE RONALD MCDONALD HOUSE IN CHICAGO THAT WAS TYLER'S HOME DURING TREATMENT AND COLLECTING ART SUPPLIES FOR THE CHILDRENS HOSPITAL OF NEW ORLEANS WHICH WAS FLOODED BY THE HURRICANE. IF YOU WANT TO KNOW WHAT TO DONATE, PLEASE EMAIL ME. THANKS!!

This will appear as my "column" in our local paper on Wednesday.

Mark your calendar for January 28, 2006. I am declaring it to be the first annual Tyler Day.

No, most of you never met Tyler, but let me tell you what I remember about him. Tyler was diagnosed at age 2 with Rhabdoid tumor, a very rare form of cancer. So rare, in fact, that doctors don’t really have a successful cure for it.

Tyler’s parents approached their son’s illness with courage, and their positive attitude rubbed off on their son. Tyler never considered himself sick. They made his trips to the hospital for his treatments fun, and he enjoyed seeing his friends there and playing in the playroom. In church, he seemed surprised to hear his name in the prayer requests and would exclaim, “That’s me!” when he heard it.

I met Tyler and his parents when Tyler was 4. He and my son, James, then 5, were both patients at Carle Clinic. At that time I didn’t realized how sick Tyler was. Some of the kids and parents from the clinic attended an Illini football game, and I got tired watching him run up and down the bleachers with the energy of a normal preschooler. Only his bald head gave him away, and from behind, I had a hard time telling him apart from my James.

We saw Tyler in clinic and at the hospital a few times after that. He always had a smile on his face. I remember him acting silly with the Child Life Specialist and playing with Thomas trains.

When we went to St. Louis for James’ transplant. I kept up-to-date with Tyler through his web site. I knew that his condition was very serious, and there was likely no cure in his future. On January 28, 2004, Tyler died.

One would expect his parents to withdraw and grieve their loss privately. Instead, Tyler’s mom has organized fundraisers for other families, visited sick kids in the hospital, participated in interviews with the media to raise awareness for childhood cancer, and convinced her famous brother-in-law, Doug Wilson, to remodel Ronald McDonald Houses in Tyler’s memory.

In one of the interviews Tyler’s mom did, she told a reporter that her worst fear is that “people will forget” her son. Maybe she thought that since he didn’t live a long life on earth, he didn’t have time to meet a lot of people and leave a lasting legacy. But I think that Tyler touched more lives in his five years than most of us will touch in a lifetime.

So, in memory of our beautiful friend, Tyler, and in honor of his brave parents, I would like to issue a challenge to our readers. On January 28, I would like everyone to do something in Tyler’s memory. Donate blood. Sign up to be a bone marrow donor. Tutor a child at school. Donate a Thomas the Tank Engine to the Pediatrics department at a local hospital. Make a donation to CureSearch or Make-A-Wish. It doesn’t have to be big, just do something.

Why would I pick the day of his death to honor his memory? I’m sure that Tyler’s parents have beautiful memories of his birth and his birthdays. I want to give them something positive to focus on on the anniversary of his death. I want to let them know, on this day in particular, that even though Tyler is not here on the earth, that we will never forget him, and that he continues to touch people’s lives.

If you choose to take my challenge, please email me at batmom@hotmail.com. I would like to share your efforts with Tyler’s parents.

What will you do to make a difference?

Tuesday, January 17, 2006 1:53 PM CST

Please look in history to view the article that ran in the Pantagraph yesterday about James.

In less than two weeks, we will be marking the anniversary of the day our five-year old friend, Tyler Wilson, joined Jesus in Heaven. I cannot believe that two years have passed. Yet, I am sure each second of each day of each of the two years have been a trial for his parents, Paul and Tracy. I will save the stories of the courage they have shown for another day.

Today, I challenge all of our friends to do *something* in Tyler's honor. Donate blood. Sign up to be a bone marrow donor. Tutor a child at school. Donate a Thomas the Tank Engine to the Pediatrics department at your local hospital. Make a donation to CureSearch or Make A Wish. I don't care what it is. Just DO *something.* Once you have done something, email me. I will save your emails and give them to Paul and Tracy later this month.

What will you do to make a difference?
Patti

PS If you want to learn more about Tyler, visit his link under Links at the bottom of this page.

Monday, January 16, 2006 8:58 PM CST

Okay, I feel a little silly. Here is a link to the article that the Pantagraph did on James. I feel silly because someone at a meeting I went to tonight told me that it was in the paper. Oops. To make it worse, the paper I work for is owned by the Pantagraph, so I should be keeping up with their paper, shouldn't I?

They didn't include the best James' quote, though. When asked what he likes best about "Cubs" (the reporter was referring to Cub Scouts), James said, "Um, I'm really a Cardinal fan!"

More soon,
Patti

Sunday, January 15, 2006 8:13 PM CST

James is still eating like crazy. I'm wondering if he is growing. He is also going through a clumsy stage. Every other word out of his mouth is "oops." Of course, when he was pretending to be a monkey and pulled the towel rack off the newly remodeled bathroom wall, it was a little more than an oops. But, we are blessed that he is healthy enough to be doing things like that, even if they drive me a bit crazy.

The weather has been very warm for January. We are all praying for some snow, and not these 50 degree days we have been having.

On Tuesday, James has an ear dr appt. He also has a photo shoot for another newspaper article. I'm wondering when he is going to get tired of these, but so far, he has been enjoying it.

Thanks for checking in on us,
Patti

Monday, January 9, 2006 5:27 PM CST

Yesterday, we celebrated James two year transplant anniversary. We went to Red Lobster (his choice) and he ate an entire Ultimate Feast. That is crab legs, lobster tail, fried shrimp, salad, fries, and shrimp scampi. Then, he wanted dessert. He had already had birthday cake and ice cream earlier, plus a Big Mac for lunch.

So, at the doctor today, he was 2 pounds heavier! The best news is: NORMAL LIVER ENZYMES. Not, "James normal," but truly NORMAL. Yippee!

The bad news for James was that he was due for 5 shots. If you remember, he has to repeat all of the immunizations he recieved before cancer, because the chemo wiped out all of his immunity.

He is happy though, because he got to go to Arby's after...
It's hard to remember, he isn't on steroids. Why is he eating like this?

Patti, James' Chef

Sunday, January 8, 2006 12:01 A.M. CST

HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO YOU! HAPPY TWO YEAR BIRTHDAY NEW STEM CELLS! HAPPY BIRTHDAY TO YOU!

Friday, January 6, 2006 1:29 PM CST

Some people have reported that their guestbook entries are not showing up. I tried to archive some of the entries, so please let me know if your posts still do not appear.

We found out at the ENT appointment on Tuesday that James has an ear infection. He had one ear infection during the five years before cancer, but has had several in the past two years. He is on antibiotics again (what antibiotic do you give the kid who has had every single one?) and will be rechecked in 2 weeks. If the fluid is not gone, the doctor wants to talk again about tubes. I know that is minor surgery compared to all of the others James has had, but I am still not sure it is the right plan.

James had his labs drawn and we will find out how his liver is doing next week at his monthly oncology appointment.

The Make-A-Wish photo shoot was great. The photographer, Vicki, was awesome. She is sending a CD of the photos, so I will post a few on the site in a few weeks.

Please continue to keep Mike in your prayers.

Thanks,
Patti

Monday, January 2, 2006 7:38 AM CST

James was featured in the December Make-A-Wish magazine that just arrived in our mail. He was very proud. On Thursday, he is taking part in another Make-A-Wish promotion. He will be going to a photo shoot in the afternoon. I hope he cooperates with the photographer. They were looking for a "silly young boy" and the MAW representative for our area immediately thought of James.

Tomorrow, we go back to the ENT to see how James' ears are doing. They had wanted to put tubes in back in the summer, but then his ears improved. He has a bit of a cold right now, so I am anxious to see how his ears look. After that appointment, we will get labs drawn for his onc appointment next week.

His pesky liver enzymes still have not returned to normal, so please pray that this is finally resolved.

Thanks,
Patti

Wednesday, December 28, 2005 8:38 PM CST

Check out the new photos on the photo page!

We had a wonderful Christmas. Of course, our kids didn't get everything they wanted, but they got a lot more than they needed.

All three kids have had colds and stomach viruses this month. Right now, James and Sarah have bad coughs, but they seem to feel fine.

James seems to have a lot of energy these days. He got a scooter for Christmas, so yesterday, he spent a lot of time outside riding it. We got a health club membership for Christmas, so we can take him swimming and keep up with his lessons, since he really enjoyed learning to swim this summer.

Please keep our friend Mike in your prayers. And, please stop by and visit his site and sign his guestbook.

Tuesday, December 20, 2005 9:14 PM CST

I was asked to create a caringbridge page for a friend, and so I thought I better update James' page first!
I didn't realize it had been so long!

James had a great birthday, but ended up sick the next day with a stomach virus. Then, he ended up with another virus. He missed a week of school, but stayed caught up with his schoolwork.

We have great news. Our friends Michelle and James had a baby girl last week. We babysit for their baby son, Colten. He is a huge joy to all of us. When I told my James about the baby, his response was, "ALL WIGHT!" He is very excited about going to see her.

Of course, the big excitement is Christmas, and every day, James tells me how many more days are left.

Please pray for our good family friend, Mike. He was in an accident and is in ICU. We will have a link to his page here soon.

Merry Christmas!
Patti

Monday, November 28, 2005 11:21 AM CST

Okay, I'm back. Sorry it has been so long between updates lately.

James had a CT scan last week, and it was ALL CLEAR! Even after 2 years, the scans send me into a frenzy. InSCANity, I like to call it. James said the contrast tasted fine this time, and had no complaints about the day. I think the trip to Dairy Queen for a blizzard afterward helped. (That and getting the day of off school.)

We had a wonderful Thanksgiving weekend. I cannot even list the things we are thankful for without crying. When I think of Thanksgiving two years ago, I am so thankful that we are all together today. Two years ago, James had just begun treatment again after relapsing. We were looking at spending Christmas in St. Louis for transplant. It was all so overwhelming.

James will be 8 on Thursday. Thank you, Sarah, for giving him his 7th and 8th birthdays!

Patti

Thursday, November 10, 2005 7:46 PM CST

Our trip to Florida was awesome. I will update soon with details and pictures.

However, tonight, I have another sweet boy on my mind. Tomorrow, our friend, Tyler Wilson, would have celebrated his seventh birthday. I am so sorry that we never got to know him well. We met him at Carle shortly before James relapsed. We had planned on attending his benefit/5th birthday party, but James was in St. Louis in ICU instead.

Tyler's parents have honored the memory of their son by giving selflessly of themselves. They have done a great deal to promote childhood cancer awareness and to help other families with their struggles. I am honored to know them and their families.

This is from Tyler's stone, and I think it sums up what a treasure he was:
"We are given many precious gifts as we go through life. Some we are allowed to enjoy for a long time... others only briefly. But each gift has the power to change and enrich us. To make us better human beings."

Today, I thank God for the gift of Tyler. I wish I understood why we were only allowed to enjoy him for such a short time. But, I pray that one day, we will all be reunited again.

Patti

Tuesday, November 1, 2005 7:58 PM CST

James and I are off tomorrow to Florida. We are going to Disney Magic Kingdom, Sea World, Gatorland, and Universal Studios. I am very excited, and James is too!

Poor Dad has to stay home with Sarah and Sam, who are a bit upset about not being included in the trip.

It rained here last night, but we still did a bit of Trick or Treating. James was Darth Vader and had a great time with it.

More when we get back,
Patti

Wednesday, October 19, 2005 8:52 AM CDT

I am so sad to read today that another young cancer fighter has joined God in Heaven. Please go to Calvin's site and offer a prayer for his family.

Not much new here. James did a wonderful job at the Make-A-Wish celebration. He was interviewed on the radio last week, and he has been enjoying his celebrity status. When it was his turn to talk at the celebration on Sunday, he wouldn't give up the microphone. Eventually, the poor MC had to just take it away from him.

More later,
Patti

Monday, October 10, 2005 4:26 PM CDT

Well, James is a local celebrity. Here is a link to the article on James' Make-A-Wish story.

I'm not sure why they published MY age (39)? James read it, and said, "I thought you were 40!" Ugh. I told him not for ONE MORE MONTH!

James was chosen to go on an American Dream Flite trip to Walt Disney World. James and I leave on November 3. I am more excited than he is, I think.

That's it for now.
Patti

Monday, October 3, 2005 6:20 PM CDT

James has been having a great time in Cub Scouts. He is currently selling popcorn. If anyone would like to place an order, please email me, and if you are local, I will have James stop by. We also can do it through email and ship it.

James was excited tonight to get 2 sales. He now has enough sales to win a pocket knife! He is happy, but I don't think I am.

I turned my story about sewing on patches into a column for our local paper. It was published, and now the whole town is laughing at my sewing failures. I'm getting the last laugh, though, since I got paid for the article.

Other than Cubs, we have been enjoying the fall weather, picking pumpkins, and practicing spelling words. For those that live in our area, check the Pantagraph on Sunday. They are doing a story on local Make-A-Wish kids and James may be featured.

Thanks for checking in,
Patti

PS Please storm heaven with prayers for Kyle--caringbridge.org/ia/kyle

Tuesday, September 20, 2005 6:22 PM CDT

James had a dr. appt today, and I am happy to report that after nearly a year of elevated liver enzymes, his ALT and AST are almost in the normal range! Yeah!

On the "funny" side, James doctor recommended that James have speech therapy. I just think that is funny for some reason. Why do I care that he talks like Elmer Fudd (using w's for r's) when he is cancer free?

James joined Cub Scouts and has his first meeting tomorrow night. I will try to take a picture of him in his shirt. I am having a bit of a problem figuring out how to sew the patches on, so if any of my local friends know how to sew and know where to put patches, please let me know. I asked the lady at the store if I could just use glue or iron them on, and she laughed at me. (Okay, so I never earned a sewing badge!)

James took a great plane ride over Central Illinois on Saturday, as part of Youth Day at the airport museum. Then, we went to a friend's 2 year-old birthday party. We all had a great day.

Please keep Calvin and Jacob in your prayers. It is so neat to see miracles happen for others.

Thanks for checking on us,
Patti

Tuesday, September 13, 2005 6:44 PM CDT

It has been a while since the last update. SORRY! I'm not sure where the time has gone, but the days are over before I know it!

We ended our summer with a lot of fun activities. We went to ride Thomas The Tank Engine at a railway museum near Chicago. We also went to the Illinois State Fair, where we got to see a Chimpanzee Show. (James was so happy...)
Over Labor Day, we went to Southern Illinois and hiked in the Shawnee National Forest and climbed rocks. We all loved it down there and can't wait to go back.

We also enjoy staying home, but when there are fun things to do, it is hard to say no to the kids. I have learned to NEVER postpone a fun activity until later. Sometimes, you don't get a chance to have "later" and you are left with regret. There will be no regrets here.

James started school on the first day for the first time EVER! He is enjoying second grade as much as any energetic boy can. There are so many more things he would rather be doing than sitting in school all day. He seems to be doing well so far. He hasn't missed any days, but will next week for a dr. appt.

We went to the Illinois football game last weekend. James was so excited. He kept saying, "MOM, LOOK AT THE SCOREBOARD!!!" He had NEVER been to a game where Illinois won. We are planning on trying to get to a few more games this season. James wants to have our own tailgate in the parking lot. Sarah had fun pretending to be a cheerleader.

Well, I better close. I will try to update more often.

GO ILLINI!

Thursday, August 18, 2005 2:09 PM CDT

Cruisin' For Kid's with Cancer is this weekend – AUGUST 20, 2005.

Following is the press release. Look for articles in the News-Gazette this week.

Charity motorcycle ride to benefit young cancer patients
On Saturday, August 20, motorcyclists from east central Illinois will take to local roadways to raise money for young cancer patients in our region.

Registration for Cruisin’ for Kids with Cancer begins at 8 a.m. and ends at 9:30 a.m. at Gutteridge Harley-Davidson in Danville. The ride ends at Andrae’s Harley-Davidson in Urbana. Registration costs $20 per person and includes coffee, donuts, light lunch, bandana and a raffle ticket.

Jane and Rick Clark of Homer are the parents of a young cancer survivor and the organizers of the Cruisin’ for Kids with Cancer motorcycle run. At age two, the Clark’s son, Hunter, was diagnosed with cancer. After surgeries, treatments, a transplant and radiation, Hunter is now a vibrant, happy 6-year-old. Sadly, though, many children lose their battle with cancer.

More than 400 children in our community have cancer or a potentially fatal blood disorder. Cruisin’ for Kids with Cancer aims to lower this number by supporting cancer research and education at Carle Foundation Hospital. Proceeds will also go to the Special Days Fund associated with Carle’s Pediatric Hematology/Oncology program. This fund seeks to make the lengthy and often painful treatment process a little easier for these children.
For more information, please call Jane Clark at (217) 896-2110.
**********************************************
So if you have a motorcycle (does not have to be a Harley!) please consider riding for the cause! There are lots of great prizes for high score and to be drawn by raffle.

In addition to this, our amazing friend Tracy Wilson (mom to Tyler) will be having an ALEX’S LEMONADE STAND at the end location (North Lincoln, just South of I-74) so stop by for a cup of lemonade. The story of Alex is pure inspiration. She was diagnosed with cancer just before her first birthday and at the age of 4 she wanted to have a lemonade stand to raise money for her hospital, last year before her death in August, she raised over $1 million for childhood cancer. http://www.alexslemonade.com/
The local bookstores sell an Alex’s Lemonade Stand Book and Kit aimed towards helping kids have a stand.

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH.
If you have a gold ribbon please wear it every day in September and tell people what it stands for. To purchase a metallic ribbon pin you may go to http://www.goldribbons.org/ or you may search the web, there are lots of products out there including car ribbon magnets and wrist bands.

Monday, August 15, 2005 6:19 PM CDT

Well, I thought dealing with cancer would be the hardest thing that I would deal with as a parent. Yes, it has been tough, but I learned on Saturday that dealing with your child's disappointments is almost as bad.

James threw out the first pitch at the Peoria Chiefs game Saturday night. James is still very weak in the arms, due to his chemo/radiation/lung biopsy surgery. Really, he didn't have any physical activity for 2 years, and is just starting to regain strength. So, I did not expect him to be able to throw from the pitchers mound to the catcher. I'm not even sure I can do that.

Well, James thought he could. He threw his hardest, and instead, the ball drifted off toward third and didn't even go very far. He was humiliated and burst out in tears. (I even heard a few giggles from the audience. GGGGRRRR!)He ran off the field crying and could hardly be consoled. It wasn't the happy memory that we have dreamed of for the past two years.

To make things worse, we sat thru 2 innings of rain, before a rain delay, and then the game got cancelled.

Hoping for brighter days,
Patti

Monday, August 8, 2005 9:21 AM CDT

Another fun week here.

On Friday, we went to the county fair. The kids had fun riding on the rides, and especially liked looking at the animals. We took our little almost one-year old friend with us, and James really enjoyed showing him all of the animals. They liked looking at the pigs the best.

On Saturday, James and his dad went to the airshow. They rode on a Huey helicopter, which was very exciting. When they got back to the ground, James first words were, "Did you see that McDonalds down there?" Just what I would expect from the "eating machine."

On Sunday, we went to the Cardinals game. It was VERY hot, and unfortunately, we left before the game winning grand slam in the 9th inning. Still, it was an enjoyable day at the game.

Living every day to its fullest,
James and his mom

Tuesday, August 2, 2005 12:04 AM CDT

Sorry (again) for the delay in updating. I just don't spend as much time at the computer in the summer as I do the rest of the year.

James CT scan was clear! Praise God. We were pretty sure it would be, but it is always a bit tense leading up to scan day. Since James missed lunch that day, I let him choose ANYTHING for dinner. He chose Red Lobster, and he ate his whole kids meal and more than half of my adult meal. Next time, I'm ordering him his own adult entree. We really need to find an all-you-can-eat seafood restaurant for him. I ended up eating cereal after we got home, but looking back at the days when I begged him to eat, I wasn't upset.

James has been taking swimming lessons. He has been doing great. Today, he said, "Look!" There was a dragonfly dancing next to him while he was swimming. I got a lump in my throat because of the "Waterbug and Dragonfly" story that I told him to explain the death of kids he has known. The dragonfly represents one who has gone to heaven. I imagined the dragonfly was our friend, Tyler, playing in the pool with James.

We are off to "Transplant Day" at the Cardinals Game this Sunday. We are very excited.

More soon!
Patti

Sunday, July 24, 2005 1:57 PM CDT

We have been having a great time, despite the HEAT here in Illinois.

James' aunt Lorie got married yesterday, and we had a great time with the whole family on Friday and Saturday. As James' dad was taking some things to the car during the reception, the 3 kids followed him out. Right next to the door was a sprinkler, watering the church lawn. A 90 degree plus day, a sprinkler, and 3 kids...You can guess what happened next. They came back inside, dripping water all over the reception hall. Of course, the boys blamed Sarah. (See photo above)

We will spend as much time with James' grandparents as we can this week, before they go back to California. It is so nice to be able to spend time with them.

James' has a CT on Wednesday. Please pray for great results from that and his bloodwork.

Thanks,
The Wet Welanders

Friday, July 15, 2005 8:59 PM CDT

James is home! I would say, "fresh from camp" but nothing about him was fresh. A bag of DIRTY clothes and showers were rinsing off after swimming.

He had a great time...the best thing was the b.b. guns. He got the "sharp shooter" award, which I can tell you is not inherited from either of his parents. He also had fun horse riding, canoeing, and swimming. We are slowly hearing all of the stories.

Tonight was hard, though. I made it a whole week without crying. I guess he learned a bit too much at camp. He began asking TOUGH questions tonight--things that he has never asked before about cancer, relapse, why Tyler died...We also talked about heaven. Wow. Being a parent is tough work sometimes. After I know he is back asleep, I am going to go outside and have a good cry.

I am looking forward to a SLOW weekend!
Patti

Monday, July 11, 2005 7:33 AM CDT

Please storm the gates of heaven for Calvin. http://www.caringbridge.org/nc/calvin

James is off at camp. We dropped him off yesterday and I pick him up Friday.

So far, I have done pretty well with this. I miss him, but I know he is having fun. He is bunking with our friend, Alex, so I am not too worried. They were having so much fun when we left that he would hardly even give me a goodbye hug.

We have had a drought all summer. Unfortunately, the hurricane looks like it will drop rain on Illinois all week---James' camp week! I am praying for rain at night and sunny days.

Patti

Thursday, July 7, 2005 10:18 AM CDT

We have been having so much fun, I have forgotten to update.

James and his dad had a good trip to St. Louis. They went to the zoo, science center, an art gallery, and saw a Cardinals game. He also saw his doctor. That went well. Of course, she gave us a laundry list of concerns for the future--heart, lungs, growth, etc. It upset me a bit. While I don't expect them to say, "We don't need to see you again, have a good life," it would be nice to be free of all of this some day. I guess I am just realizing we will never truly be "free." So, I am really working on, "He is good TODAY! Let's enjoy it and not think about TOMORROW."

Last weekend, we went to see the Peoria Chiefs. They have changed their affiliation to Cubs, which is still a bit hard to get used to. The kids still enjoy the games.

We also enjoyed the 4th, although the fireworks got rained out here. James watched them on the 5th, as Mom worked for our friends' shaved ice business. (James was proud to help, too, until the fireworks started.)

James leaves for "Cancer Kids Camp" on Sunday. It will be a LONG week without him. For those near here, he may be featured in the News Gazette. They interviewed us yesterday and will interview James at camp.

Saturday, June 25, 2005 7:08 PM CDT

Sorry it has taken me so long to update. I was waiting to get James' test results, so that I would only have to update once. We just got clarification on Friday.

James' liver enzymes continue to be elevated, but the dr. has changed his mind about how serious he thinks this is. He has decided now that they aren't high enough to do anything about and that this is just "normal" for James. We do pray that they go down, but are confident that it will just be a slow process.

James had his last baseball game today. I think he improved greatly over the season, and he is already looking forward to next season. Hopefully, he will be able to do a lot of practicing this summer and next spring, and will be at the same level as the other kids next year. He did have FUN which makes me happy.

James has been going to "college" this week. A local college runs 2 week minicourses in the summer for all age kids. James is taking art and "the greatest class ever," which he says lives up to its name. They built a rocket on Thursday! He had a hard time the first day getting used to be around kids he didn't know, but it got better by the end of the week.

Last night was the Relay for Life (American Cancer Society fundraiser). There were too many emotional minutes for me. I will post more about it and pictures later.

Patti

Thursday, June 16, 2005 2:27 PM CDT

Please keep James in your prayers. On Tuesday, he has his monthly checkup and bloodwork. His liver enzymes have continued to be elevated, and the doctor is waiting until this round to decide the next step. Please pray for normal liver enzymes.

The following week, James goes to St. Louis for his pulmonary function tests and 1 1/2 year checkup with his transplant doctor. He and his Dad are going to a Cardinals game while they are there. Mom and the preschoolers are staying at home, since they can't even sit through one of James' hour long baseball games. I think their plans also involve some museums and maybe the zoo?

James has a double-header on Saturday. We are praying for lots of hits and good fielding. He was very sad after a game last night where he struck out. He is still so weak from the last two years, and it is really obvious when he plays sports with other kids his age. I have been encouraging him to be active, but to also pursue things that he might be better at.

Thanks for your prayers,
Patti

Sunday, June 12, 2005 6:55 PM CDT

James is feeling much better. He is back to eating normally and no longer has the stomach virus. Unfortunately, Sarah has been sick for the past few days. I expect her to clear the virus much quicker, though.

James was able to play baseball yesterday. I wasn't able to go to the game, but received the play-by-play. We were also able to go to Summerfest in our town yesterday. Of course, last night was the benefit for our friends, the Bailey's. Since Sarah was sick, we just decided to leave Dad and the kids at home. Mom was able to spend more money at the auction that way! The kids were VERY thrilled with their "presents" that I brought home.

Yesterday marked the 2 year anniversary of the beginning of our cancer battle. James was hospitalized on June 11, 2003 with stomach pain. After surgery on June 14, we received the diagnosis of burkitt's lymphoma on June 18.

I have done a bit of reflecting this weekend on the past two years. OUr lives have changed so much, it is difficult to really remember BEFORE. I guess I am most grateful and think most about the way it has changed my attitude. BEFORE I was like a robot, I think, going thru life and living each day. AFTER, I cherish each day. If someone wants to go to the park, we go to the park. I could care less if there are dishes or laundry to be done.

I have learned to love the simple moments in life. So, I sign off, because my kids are catching lightening bugs, and I want to help. I may even sleep with one in MY room tonight.

I encourage you all to take time to catch the bugs,
Patti

Wednesday, June 8, 2005 3:19 PM CDT

James has been battling a stomach virus for the past week. It started with vomitting and progressed to diarrhea. His Dad took him to the dr. today, and they got a sample to send off, to make sure it is not bacterial.

Please pray that this resolves soon. We have many exciting things that James wants to do this weekend.

Thanks,
Patti

Wednesday, June 1, 2005 5:42 PM CDT

James is sick. He woke up this morning feeling a little sick and felt like he was going to throw up. He did throw up and even took a nap this afternoon (that is NOT him).
He isn't eating and barely drinking. He also said it hurts around his waist before he urinates. Not sure what that means. Please pray this is a normal virus and he is better soon. (He missed the last day of school today.)

Prayers also for our neighbor, Heidi, and her new baby, Hunter. Hunter was taken by helicopter to a children's hospital. Prayers for his complete health.

Thursday, May 26, 2005 8:33 PM CDT

**NEW PHOTOS ON THE PHOTO PAGE***

We had a wonderful night tonight. James' baseball team had a practice game, but James viewed it as his first baseball game. He got 3 hits! Of course, in Instructional League, you can get a homerun by hitting a grounder to the pitcher. Still, he was very excited and had a great time.

When we got home, Sarah asked James for his autograph, which he gladly gave her.

I am praying for a summer full of more simple happy evenings.

Speaking of prayers, please keep Calvin in your prayers.

We are hoping to go visit James' favorite newborn soon.

Finally, if you live near us, mark June 11 on your calendar. We are helping with Robby's benefit.

James had an appointment in St. Louis today. He had labwork, a dr. appt. with the transplant doctor, and a pulmonary function test. I'm not sure about the tests, but the dr. was happy with the way James looked. At least he could complete the PFT this time, which he couldn't even do last time.

James and his dad are staying in St. Louis tonight. They went to the Science Center and they seemed to be having fun when they called. Our beloved Cardinals have won 2, so St. Louis should be a happy place right now. Unfortunately the Pres debate is there tonight, close to where they are staying. When we lived there earlier this year, we found traffic got really "goofed up" by visits by the Presidential candidates, VP, and Hillary Clinton. I don't know why THEY plan their trips to St. Louis when we are there!

It is really sad in Caringbridge land these days.

Janet Joiner has frequently posted in the guestbook. Her son, Trevor, died this week of Metachromatic Leukodystrophy, or MLD. They lost their baby, Ross, to this disease/transplant in February. Please pray for their family and cosider posting a message in their guestbook.


Mikey's Page
Please continue to pray for Mikey. His mom has been told that he has irreversible brain damage.


Please hug and kiss your children and count your blessings. Live each day the "James way!"

Thursday, October 7, 2004

PLEASE STORM HEAVEN WITH PRAYERS FOR MIKEY. Mikey's Page His mom has been told that he has irreversible brain damage.

MONDAY, OCTOBER 4, 2004

WE DID IT!!! With your help, we raised about $1,350 for the Leukemia and Lymphoma Society. The above photo is "James' Team." On the left, are the famous Wilsons, who have been members of our "team" since the moment we met. We succeeded in beating our doctor's team!!! And, we had a GREAT TIME!!! (James was especially pleased with the food at the walk...)

What a weekend...On Friday night, we went to see Shark Tale at the drive-in. On Saturday afternoon, James and I went to the "Buffalo (Photo)Shoot" at a local park. See the photo page for one of the photos James took. Then, Saturday night was the walk.

On Sunday, we went to the Wilsons. James, Sarah, and Sam got to ride in a combine for the first time. They loved it, and all want to be farmers. They had fun running around and playing. Thank you to the Wilsons for a perfect day. Then, we went to Red Lobster, where James proceeded to eat more than the adults. We finally cut him off, telling him it is all you "should" eat, rather than all you "can" eat.

To be honest, there were times in the past month that I could not see a "light at the end of the tunnel." I shed many tears, believing that James would never again be the active, happy child that he once was. With your prayers, support, miracles, and great medical care, I can honsetly say that I believe he is almost there. The doctors still caution that the lung problems may come back when James is weaned off of steroids, so we are just living it up one day at a time.

Speaking of miracles, please visit Mikey's Page He had a transplant around the same time as James. He is also having problems right now. Please offer his Mom some encouragement.

Tired, very happy, and thankful in Illinois,
James' Mom, Patti

Wednesday, September 29, 2004 7:08 PM CDT

We have had a wonderful week here! James had a dr. appt. on Friday that went well. He continues to wean down on the steroids, although the side effects have not yet gone away. He was so excited to tell us about a dream he had last night about cheeseburgers!

James and his dad went on a little "vacation" on Sunday and Monday and stayed overnight at a nearby park. They had a great time, and James did a lot of walking and running. In fact, today, he and his sister were running around the house full speed and screaming. I was about to yell at them to stop until I realized it had been MONTHS since they had done that. Instead, I sat down and ENJOYED the noise. What a change in perspective.

Tonight, James and I continued our weekly tradition of walking to a local ice cream shop, that happens to be next door to an exercise studio! It made me laugh tonight watching the people exercise as I walked by to fill myself up with meaningless calories. When he put his warm little hand in mine as we walked home, I realized that life doesn't get any better...

Content and enjoying life in Illinois,
James and his Mom

Wednesday, September 22, 2004 11:23 AM CDT

We are having awesome weather in Illinois this week. James, his dad, and sister, Sarah, had a picnic last night, and James ran around a lot, and kept up with his sister. For those of you who don't know Sarah, that is not an easy thing! Today, they are out for a bike ride.

Now for a commercial break...Please visit our Light the Night Page (link above) and make a donation to James' team. We are only at 25% of our goal with a little over a week to go! It has been so exciting to see the donations coming in, some from people we don't even know! James will be having a bake sale at our church's Praise and Pizza on Sunday to raise money for the team. He complained to a friend the other day that he hasn't baked since "forever." I guess he is missing it.

If you are a Trading Spaces fan (and even if you are NOT), watch this Saturday, September 25. Angel Tyler's family (link below) will be featured. Tyler's dad is a brother to Doug Wilson of TS. They are expected to feature gold ribbons (childhood cancer awareness) and Julianna's pink wish brace-o-lets.

Saturday, September 18, 2004 7:06 PM CDT

The caring bridge community lost another precious child today. Even when we know it is going to happen, reading that it has really tears my heart out. Maybe if I knew that James would remain cancer free, have no further problems from his treatments, and outlive me, I would be able to feel like a normal mom again.

Please go to Katja's page

and sign her guestbook. Even an "I'm sorry. I am praying for you." means a lot to parents. Some of you probably wonder why I do this to myself--surf these caring bridge pages and cry over these children. As a wise mother told me recently, even if I don't go to them, I know they are there. I cannot close my eyes and make them all go away. These parents and children need every ounce of encouragement that we can give them.

Wednesday, September 15, 2004 10:39 AM CDT

The photo above was taken at the tailgate before the game on Saturday. James says he was making a funny face, not sticking out his tongue at Katy. James had a good time at the tailgate and game, but it was fairly hot, so he got overheated and tired quickly. We left in the 3rd quarter. James wasn't too excited about staying, since his favorite player (Jon Beutjer) was hurt in the first half. Jon, we are praying for your speedy recovery.
A huge thanks to Carle Hem/Onc clinic, the Illini, and Special Spectators for hosting such a great day!

On October 2, we will be participating in the Leukemia and Lymphoma Society's Light the Night walk. We have set a goal of beating our doctor's team this year, so we really need your help! Last year was our first time participating in Light the Night. We are excited to be participating again this year. The Leukemia and Lymphoma Society has many support services that have benefited our family during the past year. In addition, they fund the research necessary to eliminate these cancers. As you can see from James’ story—treatment and “cures” are not enough. Unlike adult cancers, nothing is known about preventing childhood cancer, since none of them have a known cause. Our goal is to ELIMINATE these cancers, so that no other parent or child has to endure what we have.

If you would like to make a donation, you can make one online at James Team LTN Page

or by mailing a check made out to the Leukemia and lymphoma society to 1004 Viola Drive, Leroy, IL 61752.

Thanks!

Thursday, September 9, 2004 3:56 PM CDT

This week is turning out to be an exciting one for James. Today, he was on the Channel 3 (Champaign) News at noon, LIVE. They were TRYING to interview him about the Light the Night Leukemia and Lymphoma Society fundraiser. Unfortunately, it appears James has learned his public speaking skills from his first preschool teacher (MARCA)!!! They could only get "yes" answers out of him, but the wonderful newscaster and nice woman from L&L did well covering for him. He told me afterward that he likes being on tv, but the questions were "twicky" and he "forgot the answers." In case you saw it and are wondering, no James was not mad. He was looking at the teleprompter, trying to read the words!

After the "interview" we got our tickets for the Illinois vs. UCLA football game on Saturday. James is SO EXCITED about this and the tailgate before. It is very nice of the Illini to donate these tickets to the clinic families.

Please pray for our friend Mikey, who is experiencing problems from his transplant. http://www.caringbridge.org/fl/mikey

And, for the Kaeb family from Leroy, who lost their son in a car accident. I believe they are relatives of our caringbridge friend, Lana. Please pray for her also.
http://www.caringbridge.org/in/lana

Saturday, September 4, 2004 8:18 PM CDT

It is hard to describe what life is like around our house. Perhaps this poem by another child who is on steroids will help:

If you give a kid on steroids chicken noodle soup,
he’s going to want a Gatorade to go with it.

Once he drinks his Gatorade,
he’s going to want some cheese puffs.

Once he finishes his cheese puffs,
he is going to want to bake cookies and brownies with you.

Once you're done baking cookies and brownies,
he will want to eat them.

Then he will say,” Now it is time for a chicken leg.”

Then he is going to want dessert,
how about about an ice cream bar.

So if you give a kid on steroids chicken noodle soup,
chances are you better go to the grocery store before lunch!

By Christopher Melkonian


James is feeling good. He got his PIC line pulled today. This is the first time in over a year that he has not had a port, broviac, or PIC line. We filled the "baby pool" and let the kids go swimming this afternoon.

Wednesday, September 1, 2004 8:15 PM CDT

Well, I am finally learning first-hand about the side effects of mega doses of steroids.

Last night, I was EXHAUSTED, and I put everyone (including myself) to bed early. Unfortunately, I kept hearing, "MOM! WAKE UP! I can't sleep! Finally, after midnight, James finally went to sleep.

He has been eating very well. If I were going to buy stock right now, I would think Kraft (Macaroni and Cheese) and McDonalds (Mighty Kids Cheeseburgers) should have great earnings this quarter.

James gets his stiches out tomorrow (from where the chest tubes were).

Please pray for our friend, Lana, who is having a bad time right now. Please also encourage her family. http://www.caringbridge.org/in/lana

Tuesday, August 31, 2004 6:21 PM CDT

We are home! James was discharged today. His pain is under control and his lung function is improving, I think. He is able to maintain normal oxygen levels without supplemental oxygen.

James is on massive steroids for the next month. Also, the antibiotics (iv) until Friday. So, I am preparing for the 11 pm and 5 am doses tonight and tomorrow. I didn't sleep too well at the hospital last night.

Oh, and James sister, Sarah, is throwing up. Welcome home!

Sunday, August 29, 2004 3:04 PM CDT

James is out of ICU! Hooray! They took his chest tubes out yesterday, but in that process, air got into his chest cavity. So, they had to do another procedure to remove the air, and then monitor him last night and this morning. He still has some nitrogen in his left chest cavity, so he is on 100% oxygen until it goes away. They also had to stitch where the chest tube came out on the right side.

He seems much happier and in a lot less pain today. Hopefully, he will get to go home this week. His Dad has to go back to work Monday, and we are working on childcare arrangements for the other 2. We are all very very tired, but happy that things seem to be improving.

Friday, August 27, 2004 8:17 PM CDT

Okay, here is my best summary of where things stand...

James had his double lumen broviac removed today. It has grown positive cultures several times in the past month. Once a line gets infected, it is almost impossible to clear the bacteria from it. They know the bacteria (bacillus) is not in his blood, because cultures they have taken from an arm sample do not grow this bacteria.

So, they removed the broviac in the ICU and inserted a PIC line in his arm instead. That is like a long IV, and it can remain about two months, although I hope we don't need it that long. It pulls out like an iv, so prayerfully, we are DONE with surgeries for a while.

I thought when they did the lung biopsy that there is a test to determine if the lung has been damaged by radiation. Instead, they must rule out everything else, and then assume it is the radiation. So, they have basically done that. The biopsies were "good samples." They showed some fibrosis. Nothing on biopsy looked like a virus, bacteria, or fungus, and several other tests have confirmed that he is negative for most things they can test for. (It is also not leukemia or lymphoma, PRAISE GOD!)
So, the only thing left is Interstatial Pneumonia and fibrosis caused by radiation.

So, the treatment is STEROIDS. James will be on Prednisone--double the dose of what he has taken in the past. For those of you not "lucky" enough to be part of the Secret Society of Crazy Cancer Parents, these high doses of steroids cause these kids to EAT EAT EAT like crazy and have terrible mood swings. So, I am going to the store in the morning to stock up!

James is still in ICU. He hopefully will get the chest tubes out tomorrow and moved back to Pediatrics. He will likely stay about 2-3 days there, and they will try to wean him off oxygen before he goes home.

Our wonderful friend, Tracy, came by today with pictures of their two new puppies. (Clinic staff---stop reading here...) When James is moved to Peds, we may try to smuggle one up for a visit!

Friday, August 27, 2004 2:51 PM CDT

Quick update--I am on my way to the gas station across the street to get my son a Nerds rope, Nerds, or sweet tarts.
(Yes, that means he is feeling himself...)

By process of elimination, it has been decided that James has fibrosis and pneumonia due to the radiation he received in January. He will be treated with steroids today and for about a month. The goal is to get this under control and to wean him off in a month, but it can come back time and time again, so it will be a long-term process of control.

He remains in ICU until he chest tubes come out.

Friday, August 27, 2004 11:46 AM CDT

James had his broviac removed this morning and replaced with a PIC line in his arm. His broviac was growing a bacillus that he has had off and on for about a month. Fortunately, the bacillus is not in his blood. (This is a separate issue than what is going on with his lungs...)

James did not get his chest tubes out today. Maybe tomorrow. There is still a great deal of drainage coming from them.

Still no results from pathology. It is almost definately not a bacteria--all of those have come back, I think. (negative)

Please continue to pray for pain control. James is coughing a lot, and it causes him a great deal of pain.

Wednesday, August 25, 2004 3:06 PM CDT

James is still in ICU, with both chest tubes in. These cause A LOT of pain for him. I have NEVER in a whole year and 2 months of "treatment" seen him in so much pain. It is VERY hard to watch. James' Dad is on duty today, while I catch up on sleep. I didn't sleep at all last night, because James kept crying and they were in his room every 30 minutes to do something to/for him. They are trying a new painkiller today, and "Pain Management" is the only thing on his agenda for the day. They do want him to sit up in a chair today and eat, to help the drainage coming from the chest tubes. They cannot remove the tubes until he is no longer draining fluid from his chest cavity.

The tooth fairy made it to ICU last night. Unfortunately, the tooth fairy realized a bit too late that she didn't have change, so James got $5! He was fairly excited. We joke that it is too bad there is no "urinal fairy" or James would be Bill Gates.

Another funny note--As James was coming out of his anesthetic from surgery, he started rubbing around his waist and legs. All of a sudden, he exclaimed, "OH NO!"
The nurse said, "What, sweetie?" He said, "They TOOK my underpants!" Poor guy thought he had his underpants STOLEN from him during surgery! She explained they were taken off and at the end of the bed. He is too cute.

Tuesday, August 24, 2004 6:02 PM CDT

A quick update...

James' surgery went well. They got the samples from both lungs and did a broncoscopy. The pulmonologist said he got broncoscopy samples from parts of the lung that looked "really bad."

James lost a tooth during the procedure, so the tooth fairy has to remember to come to ICU tonight.

James is in ICU on oxygen, and is in a fair amount of pain. He will have the chest tubes in for a few days. So far, no air leaks, praise God.

We won't get results for a couple of days.

Please pray for our dear Dr. M, who had to leave on a family emergency. I know he would NEVER go at this time, unless it was a major crisis. Please pray for peace and strength. God knows his situation. We are still in good hands with my other 2 favorite docs here.

Monday, August 23, 2004 6:26 PM CDT

James will have his lung biopsy in the morning (Tuesday) at 7:30 am. The plan is to take him down around 6 or 6:30 am. The surgery will last 1-2 hours. They will be taking a "wedge" out of both lungs, to increase the chance of getting a "problem area" in the sample.

He has had a multitude of blood draws and procedures done today. They are still testing him for viruses and bacteria and treating him with antibiotics. However, his doctor still believes that it is most likely a problem caused by the radiation he had in January.

Please pray for wisdom and skill for the surgeon and his assistants, the anesthetist, nurses, etc. Please also pray for wisdom and fast work for the pathologists looking at the samples. And, most importantly, please pray for complete healing for James.

We will likely be in ICU for 1-2 days after surgery. He will probably be in the hospital for at least another 3 days, but it may take longer to find the cause of the problem.

Monday 1:09 AM CDT

Update: Monday p.m.

James will have his lung biopsy Tuesday morning. Please pray for a safe surgery and complete recovery.

Saturday, August 21
James is back in the hospital in Champaign. He had a coughing fit tonight and threw up, so I brought him in. They did a chest x-ray, and it looked worse, so they did a CT scan. It showed that the pneumonia is significantly worse than 2 weeks ago. (which is what I have been saying for 2 weeks!)

So, they are going to try another antibiotic and are doing some viral tests, but they really believe that it is behaving like a radiation problem. The only way to diagnose that is with the open lung biopsy. So, as long as James is stable this weekend, which they expect he will be, he will probably have that done here on Monday.

James is currently requiring oxygen. His blood oxygen level got quite low tonight.

Specific Prayer Requests
-That the problem be diagnosed quickly.
-That if it is a radiation problem, that it can be effectively treated.
-For peace for James. This will mean that he will not begin school on Tuesday. I am so tired of not being able to do the things we have planned. (So, peace for mom, too, I guess...)

Thank You!
Patti

Thursday, August 19, 2004 9:07 AM CDT

We heard from the clinic yesterday afternoon. So far, nothing has grown from any of the cultures taken from James. They have to wait 48 hours for the final results, which will be this afternoon. As I have posted before, he remains short of breath, breathing about twice as hard as normal.

We have had some very magical moments around here recently. It seems James' sense of humor is at 100even if his lungs are not. Last night, we watched the Olympics, and James said, "I can do that!" when he was watching Men's Gymnastics. I tried to explain the strength required, and he insisted, "I exercise. I can do that!" He proceeded to do "push ups" and show me his muscles after each push up. We were very inspired by Paul Hamm, who fought back to win the gold after falling on his vault. Afterward, Hamm said,
"You can't quit until the meet is over." That is good advice for all of us.

We have also been inspired by Jordan Grosclaude and his family, who fought so hard to beat cancer. Sadly, Jordan went to live with Jesus yesterday at noon. The caring bridge community of parents is as close as a cyber family can be, and this loss is hard for all of us to accept. Please pray for Jordan's parents and brother, as they grieve this loss.

Tuesday, August 17, 2004 4:21 PM CDT

We are still recovering from Sarah's Happy 4th Birthday yesterday. We celebrated by going to the State Fair, but "sssshhhhhh!" don't tell James' doctor, please!

On Saturday, we received a call from the hospital in St. Louis. Apparently one of James' blood cultures grew another bacteria. So, he went in to the clinic today to get more blood cultures. If these are positive, his dr. recommends that his broviac be removed. Of course, I am not going to fight that decision. I have been anxious to have it removed for a month.

James' pulse oxygen level was between 94 and 96 at the clinic. He is still very short of breath. We are still praying that this is a virus that he will recover from very quickly. He still plays "normally," although he gets tired quickly and pants like a dog. It is hard for me to watch that, since that is what he acted like when he relapsed. (There is no indication that is what is going on now, though.)

I signed James up for school today. It starts August 23. Please pray that I can "let go." I think that is going to be very difficult for me, but I will do my best, since he wants to go very badly.

Thank you for your continued prayers. I will update in a few days when we get the blood culture results.

Thursday, August 12, 2004 5:31 PM CDT

We are home! We actually got home last night, but then had to learn from the home health nurse how to give James his iv antibiotics, so I didn't have time to update.

James could not do his pulmonary function test very well. He is very short of breath. However, since his pulse ox readings went up, they decided to discharge him to home.
They still have no answers on what is causing this problem. Several tests for bacteria and viruses are negative.

So, we are home on i.v. antibiotics every 6 hours. (which means 2 am, we have to get up and hook him up) We will monitor him closely and return to St. Louis on 8/31. If his pulmonary function has not improved by then, he will undergo the lung biopsy, where they take out a "chunk" (Dr.'s medical lingo...) of us lung to examine. They are hoping that he will continue to improve and that this is a virus that they could not detect.

So, please pray for James to continue to improve and for complete healing for his lungs.

Thanks.!

Tuesday, August 10, 2004 6:01 PM CDT

So far, the tests are not revealing a reason for James' problems. So far, he has tested negative for several respiratory viruses and infections. They are still waiting to hear about fungus.

They are very concerned about his oxygen level. His pulse oxygen level is running 93-95. James typically runs 98-100. They do not know why this has changed--they cannot identify what could be causing an infection.

So, they are considering other things, such as radiation and/or graft versus host. The only way to determine if this is the cause is to do an open lung biopsy surgery. Tomorrow, they will do a lung function test, and compare the results to the one he had in April. I can guarantee that it will be much worse. If it is not the same (or better), they want to schedule the biopsy.

There are several complications that can occur from a biopsy like this (collapsed lung, infection, effusion), so they are not taking the decision lightly.

Please pray for a complete healing of James' lungs and for wisdom for the doctors as they decide what steps are next. James is getting a little frustrated at being in the hospital. He hates the food, so I have to go to McDonalds, Burger King, etc. every meal to get him food or he won't eat.
So, pray for my patience and strength also. Sarah and Sam are doing well at our friends' house. Sarah's birthday is less than a week away, so pray we are released soon.

Monday, August 9, 2004 5:49 PM CDT

Well, another day without any answers. I think that is a typical day for most "cancer" parents.

James is in St. Louis Children's Hospital. Today, he had cultures of his blood, urine, "stool," and nose. I'm not sure there is anything left for them to culture. They are still waiting for results from the broncoscopy done on Sunday.

James has had a good day. He played with the new toy I bought him, and challenged me to several Pokemon cardgames. Playing cards with him is fun, because he constantly changes the rules and makes up the game as we go along. Earlier today, his dad wheeled him out into the garden. I think we are on isolation now (can't go out) until the results of the nose culture come back.

James' pulse oxygen level is hovering around 93. If it goes any lower, they will put him on oxygen, which he hates. If his condition deteriorates at all, they will do an open lung biopsy, to try to get a clue on what is causing his problems. Of course, I pray we don't have to go this route. They have him on 5 different antibiotics and an anti-fungal in the meantime.

They plan to keep him for at least 2-3 days for observation. Hopefully, all the test results will be in by then, and they can determine a treatment plan.

Prayer Requests:
-Please pray for Melody. Her family is from Central Illinois also. (We met them at Carle) She is 4 and was recently diagnosed with leukemia. Pray for her parents as they face this challenge.
-Please pray for Gabrielle. She had a transplant here in January also and relapsed with leukemia. She will have a second transplant when she goes into remission.
-Please pray that James continues to improve and that his lungs heal perfectly.
-Please pray for wisdom for his doctors.

Sunday, August 8, 2004 2:48 PM CDT

James had his broncoscopy today. He and Jim went down to St. Louis by car yesterday afternoon. I stayed home to try to accomplish some necessary tasks, as well as to take care of Sam and Sarah.

The preliminary preliminary results show that he has an infection, either bacterial or viral, that is causing pneumonia. The preliminary thinking is that is what we were seeing on the first CT scan also. They have him on three different antibiotics, until they find out for sure whether it is a bacteria or virus causing this.

James also may have an infection in his broviac. The blood cultures tested positive for strep and/or staph. They are waiting to see whether the antibiotics might clear it up and results from the scope, before deciding whether to remove his line.

Prayer Requests
-That the antibiotics and James immune system will destroy the bacteria, if that is the problem.
-That James will be able to retain a normal oxygen level without being placed back on oxygen. (He is temporarily on oxygen following the scope.)
-For wisdom for the doctors to quickly figure out what is wrong.
-That James will experience complete healing.
-That Jim and I will have safe travel going and coming from St. Louis.
-That Sarah and Sam will have peace. They are currently staying with friends.

Thank you,
James Mom, Patti

Saturday, August 7, 2004 0:08 AM CDT

Update Saturday 9:00 am
James spiked a fever last night--103.2, so we are headed to St. Louis today. Jim (Dad) will be taking him, and mom will remain at home until Sunday or Monday.

James is in the hospital.

Tonight, James started "coughing" at the Fair. It was a little throat clearing cough, but something different than "normal." He had done this a total of three times over the past two days. So, I called the dr., and he wanted him brought to the ER. After a chest x-ray, they decided to do a CT scan.

The dr. says James has "interstatial" changes--fluid caused by inflammation. There are 3 possible causes:
-Infection--bacterial (pneumonia, etc.) or viral (CMV, etc.)
-Radiation caused problem--interstatal pneumonia
-Graft versus host disease

He was kept at the hospital just in case his symptoms got worse. He acts and feels fine. They are starting him on antibiotics tonight, in case of a bacterial infection. They may start him on antivirals tomorrow, or maybe not.

The only way to get a good diagnosis is a broncoscopy with wash and perhaps a biopsy of his lung tissue. Guess where they want to send us? Looks like we will be traveling south and visiting our friends in St. Louis. The doctor is unsure if we will go this weekend or leave on Monday. He will be contacting St. Louis drs. in the morning.

Prayers for now:
-That James remains stable.
-Wisdom for the medical staff
-I'm not sure what possibility above is best! Pray that whatever James has is easily treated and he will be absolutely healthy soon.

Oh, and I'm sure you are wondering about relapse and those nodules from the first CT. Well, they can't really see them on this CT because of the other gunk. However, the dr. keeps saying that relapse doesn't act like this. And, I questioned about other types of cancer, and he seems to think that isn't what we are dealing with either. But, he said we cannot rule out relapse as a possibility.

If any of this doesn't make sense, sorry! I am tiiirrred, and the Dizzy Dragon at the fair did me in!

Monday, August 2, 2004 5:31 PM CDT

URGENT UPDATE:
AUGUST 5 pm
Please pray for Jordan Grosclaude. I have requested prayers before, but he needs a miracle and FAST.
http://www.caringbridge.org/ia/jordangrosclaude/
UPDATE AUGUST 5
James finally lost his wiggly tooth today! See the photo album for a great photo.

James had a doctor's appointment today for an exam and blood work. PRAISE GOD his lungs sound CLEAR and his bloodwork was all NORMAL. This is all very good news.

He will have his follow-up CT on August 9. Please pray that whatever was seen on the last CT is gone!

This is going to be an exciting and busy week. We will be going to a local zoo with James' best friend, Emma and her mom and brother. Sunday, the 8th is the BIG DAY. James will throw out the first pitch at the Peoria Chiefs Baseball game. He is SO EXCITED about this and has waited an entire year to be able to do this. Please pray for great weather for us.

On another note, PLEASE pray for Alex Scott's family. Alex was the originator of Alex's Lemonade Stand, to raise money for Pediatric Cancer Research. Alex joined Jesus on August 1. She was 8 years old.
http://www.caringbridge.org/page/alexscott/

Thursday, July 29, 2004 9:38 AM CDT

The above photo was taken on Tuesday. James' new favorite activity is to try to mess up any photo I take. It is pretty entertaining...

When the dr. called on Tuesday to tell us he thinks there is a "significant chance" James had relapsed, I asked him how I was supposed to live the next two weeks (until the next CT)? He told me, "Like you always have." So, we are living it up here!

On Tuesday, our friend Jodi came over and we walked down to the pool to get our favorite treat, Sno Biz. Then, the kids rolled down the hill at the pool. We then came home and James told "spooky stories" about GIANT CRICKETS and SNAKES!!! I'm not sure where he learned to tell stories, but he is quite the story teller.

Last night, we went to visit our dogs at our friend Mark's house. For some reason, the highlight of their night was running up and down Mark's spiral stairs and spinning around in a chair he has. The whole way home, I heard, "I wish we could go to Mark's house more often!" Like it was Disney World or something...

Today, James is playing with his new vet kit. The entire house is his "office." It freaks me out when he pretends to take tumors out of his stuffed animals, but the dr. tells me this is normal behavior for him. (I haven't asked about me!)

Tomorrow, we are going to the Rainforest Cafe and the Brookfield Zoo. As I have said before, James continues to act normal...showing no symptoms...and I am watching him closely.

The plan is for an exam and blood work on Monday, August 2 and the follow up CT scan on Monday, August 9. Please pray
-Bloodwork and exam are normal.
-James continues to have lots of energy and eats well.
-CT scan shows NOTHING abnormal. We are praying whatever was there before is GONE!

Thanks,
Patti, Jim, James, Sam, and Sarah

Tuesday, July 27, 2004 3:22 PM CDT

James bone marrow biopsy yesterday went well. The dr. called this afternoon to report all cells look normal. It will take several weeks to get the DNA results (whether they are all his sister's cells).

The dr. also said that the drs. in St. Louis have looked at the CT scan. No one has an answer about what they are seeing, except his dr. did say that they feel there is a "significant chance" that this is a relapse. He was much more negative than last week. All of James blood work yesterday was also good.

So, James has an exam on Monday, and then a follow-up CT the following week. We are praying that NOTHING be found on the next CT.

Thank you for your continued prayers.
Patti (James Mom)

Saturday, July 24, 2004 4:53 PM CDT

Update:
On Friday, our doctor still had not heard back from the drs. in St. Louis. He hopes to know more Monday, when James goes in for a bone marrow biopsy. PLEASE PRAY that this biopsy is clear of cancer, and that he has 100Sarah cells." James continues to eat and play "normally."

Tuesday, July 20
Well, first the good news...James feels great and the CT today of his abdomen and pelvis look good.

However, the CT of his chest shows "something" in his lungs. The dr. is not sure what, so he is sending the films to St. Louis to see what they think. The dr. does not believe it is a recurrance of Burkitt's Lymphoma. It usually does not present like that. However, that does not make me feel too much better, since James doesn't always present "normally."

The other possibilities are a resolving fungal infection. Apparently, there are lots of fungus that get in our bodies in this part of the country. Since he has been on immunosuppresents, they may have overgrown. If this is the case, it looks like the situation is resolving.

Another possibility is scar tissue from the radiation. There is nothing that can be done about this, and it could get worse. That would be a "wait and see" situation.

So, we are waiting to see what St. Louis says, but will likely repeat the CT in about two weeks.

Please pray that this is a simple resolving fungal infection. We will update more as we get answers.

Sunday, July 11, 2004 7:59 PM CDT

We had a great day today. I will post new pictures tomorrow. We had a picnic at church that turned into a riot! The kids were playing some game with water, and all of a sudden, our Youth Director appeared drenched from head to toe, and asked if "someone" could go watch the kids while she dried off. Well, since half of the kids were ours, my husband and I decided we better go out. I found Sarah in her beautiful church dress covered in water, Sam totally soaked, and James (and his broviac) soaking in a wading pool. Of course, my first reaction was to run back inside and get a camera! Gone are the days of getting mad at my kids for having kid fun. Everyone except the Pastor and James' dad ended up pretty wet.

James has a CT scan on July 20. Please pray for good results.

I am going to add prayer requests to the bottom of our journal entry and try to update more often. I know these families can use any prayer but also just to know there are people out there caring. I have heard so many times how much guestbook entries mean to these families struggling, and especially those watching their child leave their hands and go to be with God. Thank you.

Rachel--http://www.caringbridge.org/mn/rachelhansen/
Rachel may be experiencing a relapse. This is truly every parent's nightmare. Please pray for Rachel and her family.

Zoie--http://www.caringbridge.org/la/zoie
Zoie went to heaven yesterday. Please visit her guestbook and leave encouragement for her family. Please pray for her parents as they grieve.

Connor-http://www.caringbridge.com/tn/connorhunley/
Connor is a brave boy who has relapsed also and is in a very tough battle.

Tuesday, July 6, 2004 7:29 PM CDT

In two more days, James will be 6 months past his transplant. After that, his risk of relapse decreases. We are very happy about this, but I still don't feel like I will let my "guard down."

We have been having a great time. The 4th was wonderful. Our very small town has a "parade" on the 4th that is entirely kids on their decorated bikes. All of the kids win a prize. James decorated his bike and had a great time riding in the parade. Then, we worked at our friends' Sno Biz stand until the fireworks. We have been working for them at our local pool, too.

Sarah (James' sister) was concerned about the weather the other night. It was storming, and she was afraid that we were going to have a "tomato." We have storm warnings tonight, too, but no tomato watches.

As always, I have prayer requests.

http://www.caringbridge.org/la/zoie
This is from Zoie's web page:

The tumor on Zoie's liver is growing rapidly. She is on a pain pump and still in a great deal of pain. Her little stomach is so swollen. She wants to be held a lot and eats very little. Dr. Santana told Travis today that he wants to meet with them tomorrow without Zoie with them. I know Travis and Chastity have many questions for him and hopefully will get some answers. They do know that there are really no treatment options left.

Please pray for this precious family as they are facing decisions that no parent should ever have to face. Please also take a minute to sign the guestbook. As a parent it means so much to hear from everyone that is praying for them.

Monday, June 28, 2004 9:42 PM CDT

Today was James' last dosage of cyclosporin (anti-rejection medication). We will be having our "No More Cyclo" party tomorrow, complete with Silly String and Water Balloons.

James walked in our Relay for Life on Friday Night. He and our new friend Jim walked the Survivor's Lap together. It was very cute, and I didn't even cry once. (I cried all day putting photos together for a Childhood Cancer Awareness poster we put out in our team's tent.) It was really a wonderful night.

Speaking of wonderful people, thank you to all who helped make Jordan G's birthday special. A special thanks to our friend Gail and the wonderful people at Caterpillar. Please take time to go to his website and give his family (especially his Mom) support. http://www.caringbridge.org/ia/jordangrosclaude

No more doctors appointments until late July. I will continue to update and post new pictures every few days.

Thursday, June 24, 2004 5:34 PM CDT

Hi, friends. James had a clinic appointment yesterday. For the first time in months, his white count, red count, and platelets are in the "normal" range. We celebrated by going to see Garfield at the drive-in. There is no better fun than cuddling in a sleeping bag with your kids and watching a movie outside.

Tomorrow, is the Relay for Life. We will walk in honor of James, and in memory of our friend, Tyler.

Okay, I need everyone to do something for us! RIGHT NOW!!! DO NOT WAIT!!!

Please go to http://www.caringbridge.org/ia/jordangrosclaude

Jordan's 6th birthday is Monday. He will be spending it in the hospital. Please either POST IN HIS GUESTBOOK A BIRTHDAY GREETING OR EVEN BETTER--
GET HIS HOSPITAL ADDRESS OFF HIS WEBSITE AND SEND HIM A CARD!
If you know anyone at Caterpillar that could provide Jordan with some neat birthday treat, PLEASE EMAIL ME!!!
We are trying to help make Jordan's birthday special.

Saturday, June 19, 2004 6:56 PM CDT

Well, another Saturday morning was spent at our little town's farmer's market. James raised $80 for Alex's Lemonade Stand, with more to come. Thanks again to our friends who once again came out and supported us. James made banana bread and angel food cake, which were big sellers. James' grandpa donated strawberries, which we also sold. And, of course, James made lemonade. We also sold jam that James and his grandma made.

James is really enjoying his farmers market time, and the time we spend baking the week before. I had planned to take a few weeks off, but it seems that James (and now his Dad!) have other plans. We are thinking about using our future proceeds to start a small non-profit to make blankets for our local ped cancer clinic and also to send care packages to other kids we have met thru Caring Bridge, especially those that are in the hospital getting bone marrow transplants.

If any of our clever friends can think of a good name for "us," please suggest it in the guestbook. The best part of all of this is that James is so happy, feels so important, and I almost forget about the past year! It was a year ago on Thursday that we learned that James had lymphoma. We were too busy making jam to even feel sad!

Happy Fathers Day to all of the Dads out there. Sarah, James, and Sam love their Dad because he "gives hugs," "tucks me in at bedtime," and "reads to me." I love their Dad because he loves his children more than I can even describe.

Saturday, June 12, 2004 4:19 PM CDT

Yesterday, James made brownies and cookies. He could barely sleep last night, he was so excited about the Farmer's Market today.

We had a great day at our lemonade stand! James raised over $125 for our Relay for Life team. He was so happy and really loved it. He wants to do it EVERY WEEK! So, now we are looking for other things to sell. He wants to continue to sell things to raise money for cancer organizations and "his" clinic. We "sold" things by donation today, but I think we will price them in the future, because how many weeks can we expect our friends to give James $20 for a cup of lemonade?

Thanks to all of our friends who supported us today and helped James have a great day (although you warped his sense of how much his lemonade and cookies are worth...)

Tomorrow is the one year anniversary of James' surgery. We knew that they were removing a blockage from his intestine, but we had no idea what it was. There are several non-cancer things that can cause blockages, and no one had mentioned the word "cancer" to us. I still remember the surgeon coming out and saying, "I removed a tumor the size of a golf ball from your son's intestine. I don't know what it is. I've never seen anything like it, but I don't think it is cancer." The minute he said the word "tumor," I knew. It has been a long year, but as I told James today, "When life gives you lemons..."

HERE ARE SOME WEB SITES TO VISIT PLEASE! PRAYERS NEEDED URGENTLY FOR JORDAN!!!

http://www.caringbridge.org/ia/jordangrosclaude
Jordan is experiencing severe complications following his 3rd bone marrow transplant. Please PRAY, PRAY, PRAY and post in his guestbook.

http://www.alexslemonade.com Alex is an 8 year old girl whose goal is to raise $1 million this year for Pediatric Cancer Research. She has raised $200,000 so far thru her lemonade stands. Oh, and Alex has done this while battling Neuroblastoma.

Thursday, June 10, 2004 7:00 PM CDT

I updated yesterday, but somehow when I looked today, my entry is not there! Oops. Not sure where it went?

James had a clinic appointment on Tuesday. His blood counts have remained nearly the same as his appointment three weeks ago. All of his blood counts still remain lower than normal. James' dad donated blood today, and I tried, too, but my red count was too low! So, now, James and I are both working to get ours up!

FOR ALL OF OUR LOCAL FRIENDS, JAMES WILL BE "SELLING" LEMONADE AT THE FARMERS MARKET (CHURCH PARKING LOT) THIS SATURDAY. This was completely his idea and will be to raise money for our Relay for Life (American Cancer Society) team and possibly for Alex's Lemonade Stand (to benefit Pediatric Cancer Research). PLEASE, PLEASE, PLEASE COME OUT AND SUPPORT US!!!

Tomorrow is the one year anniversary of James going into the hospital, which led to his surgery two days later, and his cancer diagnosis. I think it is appropriate that we are "making lemonade from lemons" this weekend, one year later! He will also be selling brownies and cookies that he will be making himself! (He is a great cook...)


HERE ARE SOME WEB SITES TO VISIT PLEASE! PRAYERS NEEDED URGENTLY FOR JORDAN!!!

http://www.caringbridge.org/ia/jordangrosclaude
Jordan is experiencing severe complications following his 3rd bone marrow transplant. Please PRAY, PRAY, PRAY and post in his guestbook.

http://www.alexslemonade.com Alex is an 8 year old girl whose goal is to raise $1 million this year for Pediatric Cancer Research. She has raised $200,000 so far thru her lemonade stands. Oh, and Alex has done this while battling Neuroblastoma.

Sunday, June 6, 2004 11:17 AM CDT

Well, after spending the last month (at least) feeling sorry for myself and my family, I am officially OVER IT! This still isn't the life I signed up for, but I decided that I was wasting precious time feeling bad about the last year.

Yes, it will soon be one year ago that James was diagnosed. I have been reading old emails that I sent out, and remembering how I felt during those first days. A lot has changed since then, but I refuse to feel sad about it.

One of the "good" things that has happened, is I have met, both in person and thru cyberspace, many wonderful families. My life will be forever changed by some of these wonderful people, such as Tracy, mom to our friend, Angel Tyler.

Another good thing is all of the support you have all given us. It is my wish during this month that you will all join me and support some of the other families that we have met. I will be posting more often, so check back often.

PLEASE STOP BY THESE SITES AND POST A MESSAGE IN THEIR GUESTBOOK TODAY--RIGHT NOW!!!

http://www.caringbridge.org/canada/julianna
Julianna is a beautiful girl who turned 4 today! Stop by and wish her a happy (or belated happy) birthday. Her website is very uplifting and usually VERY funny.

http://www.caringbridge.org/nc/mirandarae
This family just lost their beautiful 4 year old to leukemia. Please post a message in their guestbook. A simple, "We are praying for you during this time" is all that is needed to help a grieving family know that you care.

Thanks, and our love to you all!
PATTI

Tuesday, June 1, 2004 11:28 AM CDT

Sorry it has been so long since I updated. We have been spending time with James' grandparents from California. On Sunday, James' grandparents and aunt, uncle, and cousins were all here. It was the first time we have all been together! It was a wonderful day for all of us, despite the SEVERE weather we have been having here.

Yesterday was Memorial Day. Somehow, this year, the holiday took on a different meaning for me. I don't want to take anything away from those who have served and given their lives for this country. I am deeply grateful for their service, and many of my relatives have served during wars. But, this year, I reflected on the war (cancer) that has been the focus of our lives for almost a year.

The enemy we are fighting is ruthless. Both times, the enemy ambushed us. We were not prepared for this fight. Somedays, I still wonder who will be the victor. Even if we win, we will always be changed, for we will always remember and mourn those who have been lost to this enemy. Some of them, we have had the honor to know and love on this earth, like Angel Tyler. Others, we have only known thru cyberspace--Savannah, Jakie, Maddie, Maxie, yet their deaths have shaken our souls.

The little soldiers who fight this battle each minute of each day show such remarkable bravery, courage that is way beyond their physical age. If only we, their parents, could have so much courage and strength.

As I write this today, the enemy is prepared to take so many more. I pray for miracles for all of them, like Miranda. I pray that I will see the day when no parent, no child will have to fight: the day when we are all victorious and the enemy is forever gone from this Earth.
Until then, please pray for all of us.

Love,
James Mom (Patti)

Wednesday, May 19, 2004 10:39 AM CDT

James had his weekly appointment yesterday. The doctor thinks he is doing well, and now we switch to getting blood draws and seeing the dr. every TWO weeks. His white count is still inching up, which is very good. We have scheduled him for a bone marrow biopsy and CT scan in July. If these go well, he will have a surgery to have his broviac removed. (Mom is anxiously anticipating that!)

We have had a week of very funny moments. Sarah (James' 3 year old sister who gave him the stem cells) got very mad at James on Saturday. She chased him around the house full speed, yelling, "I WANT MY BLOOD BACK!!!" We tried not to laugh, but it was too cute.

We are busy this week getting ready for our annual Preschool Graduation Ceremony. Sarah and Sam will sing and get "promoted" to the four year old class. Also, James' Grandma and Grandpa Welander are arriving from California this week. We haven't seen them since last summer, so we are anxious for their arrival.

Please keep us in your prayers.

Wednesday, May 12, 2004 8:26 PM CDT

James' clinic appointment this week was fine. His white count continues to climb, inching its way toward "normal." His platelets were down, but are still in the normal range, and his red count was down, but not a concern, since he never seems to need it to have energy anyway!

Thanks to all who posted (or emailed or called) encouragement after my "normal" fit last week! We love you all.

Now, there is one little thing you can do for us...

I am trying to pass this info on. Please pass it on to everyone in your address books, and please prayerfully consider adding yourself to the registry, even if not for this boy. After all, if 3 year-old Sarah Welander can do this, YOU can, too.


BONE MARROW DONORS NEEDED!!!!

THIS IS A PLEA FOR ANYONE IN GOOD HEALTH, AGE 18-60, WITH ANY PERCENTAGE OF AMERICAN INDIAN BLOOD IN THEM!!!!

PLEASE CONSIDER JOINING THE NATIONAL BONE MARROW REGISTRY. YOU CAN ASK TO BE TESTED FOR THE BOY I HAVE LISTED BELOW! BUT PLEASE CONSIDER STAYING ON THE REGISTRY TO HELP OTHERS TOO. THE NMDP WANT'S DEDICATED INDIVIDUALS WILLING TO HELP ANY PATIENT SEARCHING FOR A MATCH.

WHILE MANY PATIENTS ARE ABLE TO FIND A BONE MARROW MATCH, MINORITIES ARE NOT SO LUCKY. THE REGISTRY NEEDS MORE MINORITIES TO JOIN THE REGISTRY!

PLEASE SPREAD THIS EMAIL TO EVERYONE YOU KNOW!

VISIT www.marrow.org to get information how to join the registry, or call toll free 1-800-marrow2

You may contact your local blood bank or donor center to find out how to join too!

AS YOU KNOW, JAMES WAS DIAGNOSED WITH BURKITTS LYMPHOMA IN JUNE 2003. WHEN HE RELAPSED, HIS BEST HOPE WAS A BONE MARROW TRANSPLANT THAT HE RECEIVED ON 1/8/04. WE WERE BLESSED TO HAVE "BEAT" THE ODDS THAT HIS ONLY "BLOOD" SIBLING WAS A MATCH.

THE TEENAGER LISTED BELOW IS IN NEED OF A TRANSPLANT TOO, ASAP!

TRAVIS'S MOM HAD A SMALL PERCENTAGE OF AMERICAN INDIAN BLOOD FROM ON HER SIDE OF THE FAMILY.

SO FAR A DONOR HAS NOT BEEN FOUND FOR TRAVIS.

NO ONE SO FAR IN THE REGISTRY HAS MATCHED THE NEEDED ANTIGENS FOR TRAVIS THAT THEY TEST FOR IMMUNITY, WHEN CHOOSING A DONOR TO DO A BONE MARROW TRANSPLANT. IF THE ANTIGENS MATCH, THEN THERE IS A MUCH GREATER SUCCESS RATE.

THE DOCTORS FIRST CHOICE WAS TO PROCEED STRAIGHT TO TRANSPLANT, BUT BECAUSE THEY DID NOT FIND A DONOR AT THE TIME, THEY JUST CONTINUED WITH TREATING TRAVIS'S LEUKEMIA, HOPING THAT IT WOULD NOT RETURN.
THE NEWS THAT THEY FEARED CAME TO BE LAST WEEK, THAT TRAVIS HAS RELAPSED.
SOON AS THEY GET HIM BACK INTO REMISSION THIS TIME, HE NEEDS TO GO STRAIGHT TO TRANSPLANT.
THEY ARE GOING FULL FORCE WITH MARROW DRIVES IN THE UPCOMING MONTH IN HOPES OF FINDING A MATCH FOR TRAVIS.
PLEASE SPREAD THE WORD TO EVERYONE ALL OVER THE U.S., AND ABROAD, PLEASE CONSIDER JOINING THE REGISTRY.
ANYONE WITH ANY INDIAN BLOOD WHAT SO EVER PLEASE CONSIDER BEING TESTED ON TRAVIS'S BEHALF!


Travis Lind is a 16 year old from Fruitport, Michigan, who loves to play
guitar, hang out with his friends, and play video games. He is now fighting
leukemia for the second time. He spent over four months last summer and fall in the hospital, went into remission, and is now facing chemotherapy treatments and many more days in the hospital. The only possible cure is a bone marrow transplant. It
is difficult to find a match for Travis because he has a small percentage of Indian blood in him from his mother's side of the family. His older brother, Cory, is not a match. WE NEED YOUR HELP NOW to find a donor who is a suitable match for Travis. Those people who have any percentage of Indian in them are more likely to be a match, and need to be tested.
http://www.caringbridge.org/mi/trav/index.htm

Tuesday, May 4, 2004 6:28 PM CDT

James had an appointment at the Clinic today. All of his blood counts--white, red, and platelets were up today. His white blood count is higher than it has been during the past 100 days. We are very excited, and we hope it continues to climb. I am no doctor, but I believe it is due to the fact that he is being weaned from the Cyclosporin. I think that was supressing his marrow.

I know that my posts are usually "happy," and the above news is good. However, I feel like sharing this week some of my "true" feelings that I have been feeling lately. Everyone assumes that James is cured and that Jim and I are "fine." Actually, we don't really know what James prognosis is...but, I know it is not a 100% cure. Anything less than that is very scary to us. We know that we have done all that we can do, and that his health is in God's hands. What happens from here is up to God, and we just try to live for each day and each moment.

There are so many people who love us and care about James. We have only gotten this far because of the tremendous outpouring of support. But, if one more well-meaning person says to me, "You must be happy that your life is back to normal," I am going to scream. My life hasn't been "normal" in nearly a year, and it will NEVER be "normal" again. Sure, our entire family is now living in one house, but our lives have forever changed.

It is not "normal" that my son asks me what his "blood count" is this week.
It is not "normal" that my daughter has to be forced to stay in her room, so that she doesn't spread a cold to her brother.
It is not "normal" that I feel compelled to wash every surface in our home with bleach at least once a day.
It is not "normal" that anytime James coughs or looks a bit nauseated that I fear the monster is back in his body.
It is not "normal" that I have to know the details of every one of James' bodily functions. And, it isn't "normal" that I have to share these with the doctor each week.
It is not "normal" that I have had to tell my son that a friend his age died.
It is not "normal" that our daily schedule is dictated by when James' needs to take his medicine.
It is not "normal" that I have to consult a doctor before I take my son anywhere to make sure that the environment won't be hazardous to him.
It is not "normal" that I am aware of everytime someone coughs or sneezes around me.

I could go on, but I won't. Please continue to pray for us. It has been the prayers that have been the most helpful to us. But, please don't treat me like "normal."

Mothers day is Sunday. Please hug your kids and hug your Mom. If you know a mom that has lost a child of any age, please say an extra prayer for her, and go out of your way to encourage her this weekend.

Thanks for reading,
Patti (James' Mom)

Wednesday, April 28, 2004 3:40 PM CDT

You might be confused by the picture on our page. Isn't this James Page? It looks like a picture of a girl... That is James' sister, Sarah, who gave him the stem cells. This is my FUN way of celebrating the news that James' 100 day bone marrow aspiration showed him to have 99 percent donor (Sarah) cells. We joke about him turning into Sarah, so I thought having her picture on his page would be funny.

James had an appointment yesterday at Carle Clinic. He loves going there, although his favorite Dr. has disappointed us with his lack of Pokemon knowledge.

James white count is down again. Up and down. The dr. is not concerned about this, so I am going to stop worrying about it. His hemoglobin was higher, so that was encouraging. And, as always, his platelets are great.

The dr. answered a lot of my questions about what we should and shouldn't be doing. Basically, James has a "baby" immune system, and we need to be really careful. The dr. prefers no contact with cats, no Sunday School, no church, no baseball games, etc. for at least another 3 months.

I thought I would be discouraged about this. There is so much we want to do, and I try to get the most out of every day, "just in case..." But, instead, I decided to be creative about the things we CAN do. I used to spend a lot of my time involved in volunteer activities. Now, instead, I will use my "creative" talents to entertain my kids.

Last night, James asked if we could make cotton candy. (He gave me a cotton candy maker for Christmas!) So, we did that, and he had a GREAT time. Disneyworld would be great, but cotton candy is just as fun to James(and a lot cheaper, too!). Tonight we may try to put up our new tent in our LIVING ROOM! We bought it last year right before James was diagnosed and haven't gotten to use it yet.

Sarah and Sam continue to have bad colds, but James has been spared so far. If you are looking to invest in stock, try the companies that make GermX or Clorox Disinfecting Wipes. We have gone through a warehouse full recently.

Friday, April 23, 2004 10:47 AM CDT

James had a clinic appointment on Monday. This was his first time back to our "local" clinic since his transplant. Our doctor gave us a lecture on how immuno-suppressed James is. He looks great, but DOES NOT have a normal immune system and won't for a long time. We have been sticking close to home until I can get clarification next week on what exactly we need to avoid. (For example, James can't be near lakes, so that rules out one of our favorite walking places near home.)

James' brother, Sam, is sick with a cold. So, he has been playing, eating, and sleeping in his room and James in his, until Sam is better. Sarah seemed sick for a day, but seems fine now.

I would like to request prayers for my Uncle Pat, who posts in our guestbook frequently. He went in for some medical tests this week, and today ended up having a triple bypass. Prayers for a quick and complete recovery for him. In addition, his wife's (my Aunt Mary's) sister died in a tornado in Illinois this week. So, she will have to leave him in the hospital in Wisconsin to come to Illinois for the funeral this weekend. Prayers for comfort for the families of those who died in this tornado in Utica, Illinois.

Thanks to all of you,
Patti

Tuesday, April 20, 2004 10:57 AM CDT

I will update more later...

I have an urgent prayer request. Thru caring bridge, we have become aquainted with a little girl named Lakota. She is undergoing tests to see if she can have a bone marrow transplant. Yesterday, they found a tumor on her kidney. Her parents have lost 2 other children. Please pray for Lakota and visit her website: http://www.caringbridge.org/mn/laplafcan
and offer emotional support and scripture to her parents.

Thanks,
Patti

Friday, April 16, 2004 8:36 PM CDT

What a wonderful day we had! James returned home. Almost every business in our little town, from McDonalds to the Feed Store had a sign in front of their store welcoming James home. And, our church youth group made signs that welcomed James home, which were placed thru the entire town, down the road to home.

Our wonderful friend, Marca, gave James the grand tour through town in her convertable. (it is for sale, in case anyone wants to buy it for James...) The first stop was a parade by his sister and brother's preschool. Their class and parents were outside to greet James. James' sister, Sarah, ran up to the car, and he patted her on the head (see above photo). Then, we drove by the Elementary School. They had all gathered to cheer James' arrival.

After all the excitement, James wanted to go to the park. We went to the park, picked up Sarah and Sam for school, ate Kentucky Fried Chicken (James' favorite restaurant), and then it was time for tonight's party.

Many people gathered from our church and other friends to welcome James' home. They even brought a cake decorated with MONKEYS!!!

More pictures and stories later. Mom is tired. The kids, of course, are still going...

Wednesday, April 14, 2004 5:20 PM CDT

Now faith is being sure of what we hope for and certain of
what we do not see. Hebrews 11:1

We spent the day at the zoo today, after James' CT scan. The above picture shows James taking a "map break." He is very serious about his maps.

James is happy to report that St. Louis Children's Hospital uses a different CT "drink" than our friends at Carle. Much tastier. He gladly drank it and happily had his CT.
Mom is happy to report...........

CT RESULTS ARE CLEAR!!!!!!!!! NO CANCER!!!!!!!!!!!!!!!

His preliminary bone marrow biopsy results were also clear, but we always wait for OFFICIAL results to celebrate. We also will be anxiously awaiting results on what f the cells are James' and what re Sarah's.

I have been trying to pack, and I wonder how we ended up with so much stuff down here?! I've already taken 2 van loads home, and this one looks like it will be stuffed, too. A better question is where to put it when we get it home? Anyone in need of toys, PLEASE EMAIL ME!!!

Thanks to you all for your continued support and prayers.
Patti (and James)

Sunday, April 11, 2004 12:45 AM CDT

FOR GOD SO LOVED THE WORLD HE GAVE HIS ONLY BEGOTTEN SON, THAT WHO SO EVER BELIEVETH IN HIM SHOULD NOT PERISH BUT HAVE EVERLASTING LIFE.

Happy Easter!

We had a great day yesterday. We celebrated Easter with our Jodi and Grandma and Grandpa Fred. At first, I was weepy, because that is how we spent the Saturday before Easter last year. The kids had so much fun, I couldn't stay in a sad mood.

James got to have his first restaurant meal in months. He ate a huge amount of food. Then, he asked to take a "little walk" and proceeded to drag the rest of us on a 2 mile walk! Thank you Fred and Jeannette for being good sports! All 3 were so happy and had so much fun. We really needed such a fun outing.

We return to St. Louis tomorrow for 3 days of testing. James has audiology, opthomology, blood counts, and bone marrow biopsy on Tuesday. He has a CT scan on Wednesday. Thursday, he goes for a pulmonary function test and EKG/Echocardiogram. Please pray for great results from each of these tests! (Mommies get nervous when kids get all these tests, especially the ones that check for relapse...)

Our love to you all,
Patti

PS Check out the link below to see James' smile quilt.

Friday, April 9, 2004 7:29 PM CDT

FOR GOD SO LOVED THE WORLD HE GAVE HIS ONLY BEGOTTEN SON, THAT WHO SO EVER BELIEVETH IN HIM SHOULD NOT PERISH BUT HAVE EVERLASTING LIFE.

Happy Easter weekend. Happy 42nd birthday Marca!!!

I have been a bit depressed these past few days. I began thinking yesterday about our Easter celebration last year. (See above photo.) This was 2 months before our lives were forever changed by cancer. It is hard to remember what life was like BEFORE, but I miss that time terribly. We have grown closer to each other, closer to God, and have met many wonderful people along this journey. But, I would trade it all for even just one more day of BEFORE.

Today I was thinking about how hard we have fought to save our son's life. Yet, God, freely gave us his only son, in order to save us. Please accept his gift.

Tuesday, April 6, 2004 5:17 PM CDT

Today we got some great news at the clinic! James can now resume some "normal" activities. We can go to the zoo and eat AT restaurants. James wants very much to go to the Brookfield Zoo and the Rainforest Cafe. We did this in November, shortly before his birthday. (About 3 weeks after his relapse) The above photo was taken at the Rainforest Cafe.

James blood counts (white and red) were down again this week. However, he looks and feels great, so I am not going to "worry" about it. All of the other blood work was fine.

James' sister came down with us this week to keep him company while I pack up the apartment. That was a great theory, huh? In reality, I now have 2 kids dragging out all of the toys in the apartment. Guess I will wait until they go to sleep. We spent the afternoon at the "Turtle Park," which has about 7 turtle statues for kids to climb on. They really enjoyed it. We also visited the hospital garden, which they both enjoyed. Tomorrow, we head back for home to celebrate Easter.

I probably won't update until next week. When we are at home, I like to spend time with my kids, instead of on the Internet! Just assume we are busy creating memories that I will write about next week.

Patti

"If anything is excellent or praiseworthy--think about such things." Phillippians 4:8

Thursday, April 1, 2004 11:55 AM CST

Happy April Fools Day!

We have had a great day at home so far. James, Sarah, and I played an April Fools Day joke on James "old" preschool teacher. We went down to preschool before anyone else got there (Marca gets there early!) and pretended that James and Sarah were there for school. She was so happy to see James and enjoyed our "joke" very much. (See above photo.)

James has returned to his "old" self. He has a lot of energy, and spends a lot of time laughing and talking. He is back to being a "motor mouth" and trying to carry on conversations with complete strangers. My heart is so happy to see him act this way.

He is also so proud that he can do so many things for himself. He has been helping me around the house and helping his brother and sister with things.

Tuesday, March 30, 2004 1:06 PM CST

James went to the clinic today. His bloodwork was all fine, praise God. His white count and ANC were lower, but they assured me that it will bounce up and down for a while and won't be "normal" for some time.

So, we are headed home for a few days. James really wants to be home for April Fools Day! Yikes. I am a bit concerned. I told him he better not try to crazy glue a diaper on his brother and sister!

The above photo was taken when we were all home last time. A wonderful woman got James' favorite Illini football player, Jon Beutjer, to sign a t-shirt for him. I tried to do the website today in ORANGE and BLUE, but they did not have ORANGE as a color choice!

Thanks to all of you!
Patti

"For when I am weak, then I am strong." 2 Corinthians 12:10

Monday, March 22, 2004 1:07 PM CST

Dad and James are back in St. Louis. James has a dr. appt at the clinic tomorrow. We have some specific prayer requests for this week:

-Sam (James' brother) has a cold. Please pray for him to get over this, so that James can come home on the weekend.
-Please pray for good results from the blood tests tomorrow--that James white count continues to climb, that the level of cyclosporin is his body is normal, and that his kidneys are functioning properly.
-James has felt a bit "queasy." I think it is from the cyclosporin. Please pray that this goes away.

Thank you.
Patti

Friday, March 19, 2004 7:00 PM CST

We had a great day today. We spent the day in Illinois at home. It was very warm, and James spent time playing with his puppy, riding his bike, and helping dad put together his new rototiller. Spring is in the air, and we know we will be home for good soon.

Dad and James head back to St. Louis tomorrow and Sarah and Sam return from Grandma and Grandpa's house. 29 more days and we will be (as Sarah says) "five families" again.

Thursday, March 18, 2004 5:55 PM CST

Great news! James numbers were better today. (It is ALL about the numbers...)

The level of cyclosporin in James' blood is still high, but not as high as it was on Tuesday. They decreased his dosage again. His potassium is back to normal, and his BUN (kidney) is down also. And, his white blood cell count and ANC went up.

His next appointment is Tuesday. Because he did so well, we are HOME right now, probably just for the night.

I have forgotten to write that a blood draw on the day that James had his bone marrow test done revealed 100f the cells there were Sarah's. That means he is 100ngrafted!

Praise God for all of these good results!

Tuesday, March 16, 2004 4:12 PM CST

Well, confusing news to report. James is acting like himself, running from room to room and acting crazy. That is the great news!

However, his blood counts fell from last week. I was hoping once the virus had passed that they would go up and stay up. The reason is probably that the level of anti-rejection medicine in his blood is twice the level that they want. As a result, his kidney function tests (BUN) and potassium were also very high, which is not good.

So, they have put James on a smaller oral dose of the anti-rejection medication (cyclosporin) and he will have labs repeated on Thursday. Please pray that his kidney function will be normal!

Thanks,
Patti

PS I met a family from Bloomington today, whose son is down here for surgery to remove a tumor on his spine. Please keep Grant in your prayers. His parents are waiting for pathology to tell them what the tumor is. Please pray it is simple and easily cured!

Thursday, March 11, 2004 2:46 PM CST

HAPPY BIRTHDAY, SAM.

We had a great day today and yesterday. James returned HOME for 24 hours, to help celebrate his brother's 4th birthday. Last night, Sarah was walking around the dinner table counting. She then exclaimed, "There is five FAMILIES here!" We were all so happy to all be together again, for the first time in nearly 4 months.

James got a lot of exercise bouncing around the house and chasing his brother and sister. He ate a lot, too. I think it was really good for his mental state to be able to come home, even if just for the day.

Dad took James back to St. Louis, and Mom is staying at home with Sarah and Sam and continuing the birthday festivities.

Tuesday, March 9, 2004 2:10 PM CST

We had a fun morning at the clinic! James ate a fruit roll up with tongue tattoos before his appointment. His tongue was bright green, and the dr. and nurses teased him about getting admitted to the hospital so that they could fix his tongue. He jumped around the exam room, like he had before he got sick.

His counts have gone up. His red cells are normal, since he got a transfusion last week. His platelets are also in the normal range. His white count has gone up. The dr. thinks that the virus was suppressing James' marrow, so they expect his counts to keep rising now.

James appetite has picked up. He asked for pizza last night and even asked for seconds.

Thank you all for your continued prayers.

Monday, March 8, 2004 4:46 PM CST

The above photo was taken today. I bought James a squirt gun, and he rewarded me by squirting me! I was delighted, since he actually ran for the first time in 2 weeks! He had a great time, and didn't complain about being cold, which has been a frequent complaint.

James still hasn't regained his full energy or appetite, but we are praying that he will continue to improve each day.

He goes to the clinic tomorrow for his weekly appointment and blood tests. I will update after that.

Thanks to everyone for your continued prayers for James' health and healing.

James Mom

Sunday, March 7, 2004 3:00 PM CST

James got to come home from the hospital on Saturday afternoon. He is still "worn out" but has a bit more energy than last week. He spends a lot of time napping and laying on the couch watching tv, but at least he is laughing again.

We are working hard at getting him to eat and drink enough again. The doctor still believes he had a virus and his body is still probably fighting it. She doesn't believe he has an appetite, but he gets weaker and weaker from not eating.

Prayer Requests:
-For James to eat and drink more and more each day.
-For James to regain his energy day by day.
-For James to feel good next week, since Mom wants to go home for Sam's birthday on Thursday.

Friday, March 5, 2004 2:05 PM CST

Well, we thought that we would get to go "home" from the hospital today.

Yesterday, they gave James red blood cells. He really perked up and had a great time playing. But, last night he got a fever again. They sent off more blood cultures and viral cultures. Today, he is back to being sleepy and is refusing to eat or drink.

Because of the fever, the drs. feel it is a virus. He will remain in the hospital at least until Sunday.

Wednesday, March 3, 2004 9:07 PM CST

Another long day. I actually would rather have a kid wear me out from running all over (like he did a couple of weeks ago) than wearing me out watching him sleep.

James did perk up a bit tonight. He watched Spongebob with me and layed with me on the window seat in his hospital room. He is refusing food and they increased his iv fluids, since he isn't drinking as much either.

The dr. wants to see what he looks like tomorrow. We should have some more viral cultures back, too. So far, everything is negative. His temp is not getting as high anymore.

Now, the drs. are considering that this is the beginning of graft-versus-host disease, where Sarah's cells attack James' organs (the stomach in this case). They mentioned that if he shows further symptoms, they will have to do a "scope" of his stomach and take a "biopsy." Then, they would put him on stronger immunosuppressents.

We are still praying that he will wake up tomorrow and feel better.

Tuesday, March 2, 2004 8:10 PM CST

James was readmitted to the hospital this evening. I was concerned, because he has been so tired. He has been napping several times a day, and showing no interest in his normal activities. He even said he wanted to go to the hospital, and he really doesn't like the hospital, so I knew he felt lousy.

They will start fluids and antibiotics and watch him. They have already tested him for bacterial infection, which has all been negative. The results are still pending on several viral infections that are possibilities.

Prayer Requests:
-Wisdom for the medical staff
-Peace for Dad, who will be back at work tomorrow
-Sleep for Mom
-That James will be his normal perky self soon. I think this is the worst he has felt since he has been in St. Louis for the transplant.

Tuesday, March 2, 2004 1:10 PM CST

James went into the clinic again today. Everything is about the same as it was yesterday. He is very tired, and has no energy. Getting him to eat is a bit of a challenge, too.

I found this on another website, and I thought I would share it.

"The Strength of an Egg"

Parents of children with cancer are often referred to or viewed as having "strength like a rock". Albeit flattering it is not quite true. It is more like the strength of an egg. An egg you ask? Yes!
If you'll think about it, you'll see my point.

An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be
as smooth or solid.

Most children, at some point, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even
slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no-longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the "HAND OF HOPE".

Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household,
going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed!

Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of children with cancer will pick
themselves up and put themselves back together again.
Juliet Freitag (mom to Angel Kyla)

Monday, March 1, 2004 6:12 PM CST

James had an appointment at the clinic today. They considered admitting him to the hospital, but decided to send him home and have us bring him back again tomorrow.

His ANC is over 1,000. His red blood cells and platelets continue to climb. In fact, his platelets are now in normal range. His kidney function is good also. His potassium is a bit high again, as was the level of his anti-rejection medication.

They continue to believe that he has a virus. They did blood cultures again today, this time for bacteria and for viruses. Unfortunately, it takes about 5 days to get results of viral cultures.

James napped today, which is very unlike him. He continues to spend most of the day on the couch. No fevers over 101 so far today, though.

Sunday, February 29, 2004 9:21 PM CST

James has had "fevers" every day since leaving the hospital. The nurse told us on Thursday that the virus may last a few more days. I called the dr. on call tonight, and they still believe he has a virus that needs to "run its course."

Tonight, he had diarrhea, so we will take him to the clinic tomorrow. This could be from the virus, or a sign of graft versus host disease.

This virus has really been hard on him (and us). He barely eats, although he drinks a lot. He has very little energy, takes naps (not at all James!), and cries at everything. He says he has no pain.

Please pray for James to get over this virus soon!

Thank you,
Patti

Friday, February 27, 2004 2:22 PM CST

James was discharged from the hospital on Wednesday afternoon. They suspect his fevers are caused by a virus. The blood cultures did not grow any bacteria, so no bacterial infection.

James continues to have fairly high temperatures in the evening. He is not eating much either.

Please pray that he gets over this virus soon!

Thanks,
Patti

Monday, February 23, 2004 4:43 PM CST

Friends,

James is back in the hospital. On Friday, he threw up one time, with no other symptoms. The drs. asked that we "watch him" and thought it was probably either his antibiotic or antirejection meds.

On Saturday, we spent some time at the E.R., because he had pus drainage from where his Broviac line (which we use to give his iv meds, for blood draws, etc.)enters the skin. The doctors felt it was a superficial infection and sent us home with antibiotic ointment. They also cultured the site and did blood cultures. Those results are still pending.

Last night, as I was sweating and about to turn on the air conditioning,(all the heat rises to our 22nd floor apartment), James said, "I'm really cold!" I thought, "uh oh." I took his temp and it was 101.7. I double-checked with another thermometer and called the dr. They sent us to
the E.R. and then around 12 midnight, we were admitted.

They repeated the blood cultures and did blood chemistries. At first, they said his potassium was very high, so they also did an EKG, which was normal. Then, they found his kidney function was abnormal (3 X higher than normal). They estimated his kidneys were only
filtering at 50%. When that labs were repeated this morning, the creatnine and potassium were in the
normal range, although higher than they have been. So, they are watching that too.

James has not had a fever since early this morning, so as long as no more fevers and the blood cultures come back okay, we should be going "home" tomorrow.

Prayer Requests
-James fever broke around 4 am. Please pray it does not return.
-Pray for normal test results for kidney function.
-Pray for peace for James. He is UPSET to be here.
-Pray for good sleep for Mom. I have been up for 24 hours.
-Pray for normal blood culture results

Thanks,
I'll keep you posted,
Patti

Sunday, February 22, 2004 5:03 PM CST

Yesterday, we spent a "little" time in the E.R.

On Friday, James threw up one time. We are still not sure what caused this. It may have been one of his medications, but he says that his stomach does not hurt.

On Saturday, before his bath, I noticed that there was a discharge from where his catheter goes into his skin. Since he is very prone to infection, he had to go into have it cultured. They cultured the site and also took blood cultures. The doctor felt it is a localized infection, so he sent us home with antibiotic ointment. James ANC was a bit down when they did a blood count.

James remains in fairly good spirits. His energy level is not quite normal. Depending on his red blood cell count on Tuesday, I may ask them to give him a transfusion of red cells.

Prayer Requests:
-That the localized infection around his broviac (or bwowviac, as James calls it...) clears up soon.
-That the infection is localized to the skin and not in his blood or in the "lines."
-That James blood counts will be up on Tuesday.
-That James continues to drink well. He has been drinking with little problem.
-That James' appetite will increase. Now that he is drinking a lot (and not getting much exercise) he doesn't want to eat much.

Thank you.
Patti

Tuesday, February 17, 2004 12:47 AM CST

"The earnest prayer of a righteous person has great power and wonderful results." James 5:16

Friends,

Thank you for praying for us this week. We have "wonderful results" to share.

James white blood cells and platelets were up today. His ANC was 986, up from just over 500 last week. His platelets were 110. Normal is 140, so we are almost there! His hemoglobin remained the same.

In addition, we received the results from his bone marrow testing. 96% of the cells found were Sarah's! That is wonderful news.

On Sunday, our church family surprised us by giving us a very large "love offering" that they had collected for us. We are so blessed to be part of such a loving church family and close-knit community. I can't wait until we can all be home again.

Please continue to pray for health and good results. We have seen God work in a mighty way!

Patti

Thursday, February 12, 2004 4:25 PM CST

James ANC was down again today. His red blood cells and platelets were up a bit. This is a bit discouraging for us, since we would like the numbers to soar and not come back down. But, we will wait patiently...

James kidney function tests are also higher. It has been a bit of a challenge to get him to drink enough.

Prayer Requests:
-For James blood cells to increase, particularly the white blood cells.
-For test results that we are waiting for to be great--that Sarah's cells are doing well in James.
-For James to cooperate with his "drink schedule."

Wednesday, February 11, 2004 3:19 PM CST

Yesterday was January February's birthday. (That is James' stuffed monkey in the picture above.) James thought she needed birthday cookies, so she got some. She had a very nice party, and fortunately did not expect any presents!

Mom made it home to Illinois today.

We found out that James' bone marrow biopsy shows no cancer cells in his marrow. They did not expect any to be there, but it is still nice to get official confirmation of that. Tomorrow James goes for bloodwork again. We should have results on the DNA of the marrow next week.

Monday, February 9, 2004 12:42 AM CST

If you missed yesterdays post about joy, please go to the past journal entries and read it. It truly summarizes who James is.

James blood counts are UP!!! His ANC and platelets increased. Not normal yet, but heading in the right direction. His hemoglobin (red cells) did decrease, but they are not transfusing him yet, since he is still energetic. He will go in Thursday to be rechecked.

And, Mom called the "insurance" regarding the SUV. She talked to the nicest person in the world! They said it is not a problem and not to worry. (but get it fixed!)

So, we are having a great day here!

Sunday, February 8, 2004 10:04 AM CST

"...the joy of the Lord is your strength."
-Nehemiah 8:10

A friend of ours recently lost her father. Shortly before his death, they made a "Joy List" of happy memories that they had with him.

I realized how blessed our lives could be if we kept a running "Joy List" of happy memories that we could focus on during our trials.

I began to make a list yesterday. I explained to James what I was doing, and I asked him to remind me of fun times we had this summer. I was thinking he would remind me of our trips to the apple orchard, trips to the park, camping out at Wildlife Prairie Park with his Dad, etc. Instead, he looked confused. Then, I realized that my beautiful child views almost *every* minute of his life as JOY! I had to ask him, instead, to remind me of the "Best of the Best" times. How blessed our lives could be if we only lived our lives like James!

Praises/Joys:
-It was warm enough yesterday for James and Dad to go for a walk around the block.
-James easily drank his fluids yesterday, with minimal nagging from mom.
-James had fun writing "letters" to Mom and Dad yesterday. They are masterpieces that will be treasured forever.

Prayer Requests:
-For James blood counts to be UP when we go to the dr. tomorrow (Monday).
-For good results from the bone marrow aspiration/biopsy.
-Mom was in a minor fender bender yesterday. Praise that no one was hurt and that she was alone in the car. Prayer that the insurance will be friendly and deal with this in an efficient manner.
-For safe travel for Mom as she returns to Illinois late next week. She is a little anxious about driving now!

Friday, February 6, 2004 6:14 PM CST

"Wait patiently for the Lord.
Be brave and courageous.
Yes, wait patiently for the Lord."
-Psalm 27:14

Anyone who knows me (James Mom) well knows that patience is not one of my good qualities. However, patience is what is required of me, and I am trying to learn...

James' lab work was repeated today. His kidney function tests (BUN) are still a bit high, but going down, which is the right direction. He has done a bit better with fluids, but still needs to drink more to flush the cyclosporin (anti-rejection drug) from his system.

James blood counts are still declining. His platelets, red blood cells, and ANC all declined again. He will go back on Monday to repeat the tests. He may be started on G-CSF shots again, but they are waiting until Monday in the hopes he will turn around on his own before then. The dr. does not seem too concerned at this point.

James also had his bone marrow aspiration/biopsy today. We will not have results on what percentage of the cells are James and which are Sarah's until next week. Of course, they do not expect to find cancer cells in his marrow, but it is something that always weighs on my mind until the results are back.

Please pray for James counts to go up and for the bone marrow to contain mostly Sarah's cells. Also, please pray for James to be cancer free for the rest of his life. Finally, please pray for Mom's mental health. Thank you!

Wednesday, February 4, 2004 5:22 PM CST

No new information today. We are waiting until Friday to get James' labs repeated and have the bone marrow biopsy.

So, here is Mom's favorite "new" joke:

One day there's a particularly large number of saints waiting to enter Heaven. Saint Peter, of course, has to check their credentials one by one, and that takes hours. But these being saintly people, they all wait very, very patiently. Then, all of a sudden, out of the blue, someone wearing a white coat with a stethoscope in his pocket jumps the line, walks to the front of the queue and breezes in through the Pearly Gates.

One of the saintly people approaches St. Peter. He says, "Saint Peter, we've waited a long, long time, and then all of a sudden that guy wearing a white coat with a stethoscope in his pocket just walks past you right into Heaven. What is that about?"

"Oh," St. Peter replies. "That's God. He thinks he is a doctor."


Prayer Requests:
-That James bone marrow will "crank up" and his cell production will be normal.
-That the bone marrow biopsy will be painless and that the results will be good. (That Sarah's cells compose most, if not all, of the marrow)
-That Jim and Patti continue to rely on God for their daily strength.

Tuesday, February 3, 2004 3:44 PM CST

Good afternoon. James had a dr appt today. They felt that he looks great. However, his blood tests showed that his white counts, red counts, and platelets have declined. They do see this happen, and they are not concerned "yet."

James has a bone marrow biopsy on Friday to determine what % of cells in his bones are Sarah's. This is a standard test that is done at one month. He will have his blood counts retested at that time.

Also of concern is that his BUN, a measure of kidney function is elevated. So, he needs to drink more, but for once in his life, this is proving difficult.

Prayer Requests:
-For James bone marrow to increase in production to normal levels.
-For the bone marrow biopsy to be painless and for the results to be good.
-That James will be thirsty and want to drink more.
-That James Mom and Dad will be able to stand strong in faith and have peace and hope.

Thank You.

Thursday, January 29, 2004 4:47 PM CST

James continues to do well and be in great spirits. He spent much of today playing Rescue Heroes and trying to learn to do a headstand. (I'll post that picture this weekend!)

Last night, he asked for chili AND tacos for supper. Then, he topped it off with a huge bowl of chocolate ice cream.

The above photo was taken at the clinic in Champaign this fall. Jon Beutjer, the quarterback of the Illini football team, played a video game with James. We just read in our local paper that Jon will be back again next year to play Illinois football. James is very excited about that, and hopes that the doctor will let him go to the games this year. (We are avoiding crowds right now.)

Wednesday, January 28, 2004 4:44 PM CST

James is doing great today. I made it back to St. Louis. All James cared about was whether I brought the computer printer, so that he can print out his Rescue Hero badges.


It is with great sadness that I write today's update. Our friend, Tyler Wilson, "lost" his battle with Rhabdoid tumor. Tyler died peacefully this morning in his mother's arms. I cannot imagine the pain that Tyler's family feels. Please keep them all in your prayers. I will always remember Tyler as a beautiful little boy, with a huge amount of mischief in his eyes and his smile. He and James could have taken the clinic apart in less than 5 seconds, if they had ever been given the chance.

Many people have commented on how well Jim and I have handled James' illness. Tyler's mom, Tracy, taught me a great deal about handling this situation with strength and love. She was at the clinic the day we found out that James had relapsed, and was a great source of comfort and encouragement for me. I pray that God will provide Tracy and her husband Paul with all of the comfort and strength that they will need to make it through this difficult time.

Finally, we praise God for the gift of Tyler, and I praise God that I had the privilege of knowing Tyler and his family.

Tuesday, January 27, 2004 4:56 PM CST

James had his first doctor appointment/blood tests since getting out of the hospital.

His ANC, red blood cells, and platelets are all doing well.

In addition, the other tests were all "fine."

Mom is still in Central Illinois with the "babies." We got some snow the past few days, and it has been blowing and very cold today. Hopefully, Grandma will be able to make it down from Northern Illinois tomorrow, and Mom can rejoin Dad and James in St. Louis.

James has a bone marrow test next week. Please pray it goes well (painless) and that the cells that they find are what they are supposed to be. They are testing to see what percentage are James and what percentage are Sarah's. Obviously, we want to see mostly, if not all, Sarah's.

Sunday, January 25, 2004 1:47 PM CST

Mom got out of St. Louis yesterday just in time! They have sleet there today, so James and Dad will be spending the day indoors! They are calling for 2-6" of snow in Central Illinois, so Mom and "the babies" might get to build a snowman tonight.

James continues to do well. Please continue to pray that Sarah's cells completely take over James' bones, and that James own marrow is gone. Please pray that he does not get any infections, since the medicine he takes daily suppresses his immune system. Please pray that his appointment on Tuesday goes well.

***********Please join us on Monday at 6:30 pm standard time in praying for a miracle for our friend, Tyler Wilson. (See below link) Tyler will be undergoing radiation at that time.*******************************

Friday, January 23, 2004 6:53 PM CST

"Carry each other's burdens, and in this way you will
fulfill the law of Christ." Galatians 6:2

Dear Friends and Family,

First, James continues to do well. He and his Dad spent two hours walking in Forest Park today. It was warm here today, and he enjoyed being outside.

Now that things have "settled down," I have had time to read many of your posts, emails, etc. We always knew we had wonderful friends, family, and coworkers, but we are overwhelmed by the support our entire family has received. Your gifts, cards, emails, posts, calls, and prayers have meant more than you will know. They have helped us make it thru James' hospitalization with our sanity and smiles intact.

The road ahead is still a long one. However, with your support, we look forward to the future with hope and peace.

Love,
Jim, Patti, James, Sam, and Sarah

P.S. If you haven't already, we would greatly appreciate you adding our friend, Tyler Wilson to your prayer list. There is a link to his website on the bottom of this page. Tyler (5 years old) begins radiation next week. Please pray for a miracle for Tyler, wisdom for his doctors, and peace for his family. Thank You!

Thursday, January 22, 2004 12:11 AM CST

"I will tell of the kindness of the Lord, the deeds
for which he is to be praised." Isaiah 63:7

The above picture of James and his monkeys was taken 5 minutes before we left the hospital today!

James' ANC is up over 3,000. More good news is that he is also producing platelets, so he shouldn't need any more transfusions. The nursing staff was all surprised that he has done so well and is being released so soon. God is so good!

James is happy to be back "home" at our apartment. He has been playing with some Pokemon toys that our friends loaned us. Our first appointment at the clinic is Tuesday.

Wednesday, January 21, 2004 9:03 AM CST

Good (great morning), friends.

James ANC this morning is over 1500! He shows no signs of host versus graft disease.

The plan is still for us to be discharged tomorrow (Thursday). Today will be spent setting up home care and learning the things we need to know to care for James.

We are being discharged to our apartment in St. Louis and the plan is still for us to be here for 100 days post transplant.

Tuesday, January 20, 2004 1:40 PM CST

James ANC is 400 today! So, they are planning on discharging him on Thursday! Yeah! We still need to stay in St. Louis for a while, but at least he won't be in the hospital.

Monday, January 19, 2004 1:32 PM CST

We had great news this morning.............

After several days of having no ANC (a measure of white blood cells in the body), James now has an ANC of 30! While this is still VERY low, it means that Sarah's cells have engrafted!!!!!!!

Normal ANC is over 1000. James needs an ANC of 500 for 3 days in a row to be discharged to the apartment. The doctor estimates that we may see an ANC of 500 by Wednesday. They are still planning on discharging us late this week! YAHOO!!!!!!!!

Thank you for all of your prayers. James temperature still goes up and down, but not high enough to warrant extra measures. His lab tests to measure organ function are still fine. We are still praying to see a "little" fighting between Sarah's and James' cells, but not much. So far, there has been none.

Friday, January 16, 2004 12:49 AM CST

James continues to do well, although he is getting a bit tired of being in the hospital. Yesterday, he was a bit crabby and wanted to watch television all day. He didn't eat much either. He seems to have more energy today.

The "experts" still predict that he may be released from the hospital late next week. We are beginning to learn the things we will need to know to care for him at the apartment.

Please continue to pray for his organ function, for minimal graft versus host symptoms, and that the cells will begin to engraft soon!

Oh, the above picture is James and his monkey collection taken this morning.

Wednesday, January 14, 2004 7:13 PM CST

James won a stuffed horse playing "Hospital Bingo" today, so according to him, it was a "great" day. He walked around his room chanting, "I won. I WON!" for at least 20 minutes.

We are up to day 6 post transplant, so we have 6 monkeys hanging outside James' room. The nurses and doctors are excited to see each new monkey each day. I have been teasing his doctors, because we only have 6 monkeys left! So, I told them to plan on an early discharge.

According to his doctor, the nurse practitioner, and the head of the bone marrow unit, James is doing "extremely well." We are very happy with this news. His counts are still going down as expected, and they think we might see engraftment begin as early as this weekend.

He is flushed tonight from one of the antirejection medications, but does not seem to be bothered by it.

Monday, January 12, 2004 12:21 AM CST

James continues to do well. His white blood counts are very, very low (as expected). So, prayer requests for the next few weeks would be that he does not develop any type of infection--bacterial, viral, or fungal.

It typically takes about two weeks for the donor cells to engraft. Graft versus host disease is not a concern until then.

His eating continues to be sporadic. Please pray that his appetite will improve. He continues to send Mom on "scavenger hunts" for food that sounds good. These are usually foods he sees advertised on television.

James' liver seemed "tender" to the doctor today, although his lab work still is okay. Chemotherapy and the other drugs he is on (as well as the engraftment process) can be very hard on the liver. Please pray that his liver continues to function normally.

Saturday, January 10, 2004 4:51 PM CST

James had a good day with his dad. Mom took Sarah home to Illinois today. Before she left, James sent her out for a Hulk Lunchable, which he said he would eat for lunch.
He reports that he ate the whole thing and did not get sick! YEAH!!!

The doctor and nurses all say that James is doing great.

Sarah is also doing well. You can barely tell where the catheter was in her leg.

The above photo was taken earlier in the week. James was playing his favorite computer game. You can see the beginning on his monkey collection hanging outside his room. Please see our photo page for a picture of the "Big day." (transplant day)

Thursday, January 8, 2004 9:21 PM CST

Today was the BIG DAY!

They began Sarah's apheresis around 10:00 am. They took blood out of her leg and spun it in a centrifuge, which knows how much stem cells weigh. They separated out the stem cells and returned the rest of the blood back to her. Her entire blood volume went through the machine (not all at once!) 4 times.

Sarah's catheter clogged an hour into the procedure--she had formed a clot. So, they had to use a clot busting drug (plus lots of prayers from our church family). An hour later, it was going again. They had warned us that it may take another collection tomorrow, but we got it all done today. They needed to collect 2 million cells, but ended up collecting 3.4 million. WOW!! Great job, Sarah!!!!!

At 5:00, Jim, Sarah, and I got to watch Sarah's cells being delivered into James through his port. It was quite emotional for me. I may have given James life, but in all liklihood Sarah is saving his life. I wonder who will be the most spoiled in our family from now on?

The staff all love Sarah, especially James' doctor. They are all laughing about the girl who spent the night sleeping in her crown and holding her septer.

Now, we wait 2 weeks for the cells to engraft.

Wednesday, January 7, 2004 5:52 PM CST

What a long day! Sarah had her surgery this morning. She woke up screaming at the top of her little lungs in her high-pitched Sarah scream. They quickly came and got me and quickly transferred her up to the floor. I just thought, "hey, welcome to MY world..." but the poor doctors and nurses couldn't handle much more of it. She set off all of the other kids in recovery and by the time she left, they were all screaming.

James had his radiation this morning. It made him quite sick. He had ativan and morphine this afternoon, and he is feeling a bit better now. He has a fever, which is common following radiation, but they have taken blood cultures, just in case.

So, tonight Jim and I will rotate back and forth between their two rooms. I am off now to get some food that James saw on a tv ad that he thinks looks good. of course, Sarah also wants something that isn't served at the hospital...sigh...

Tuesday, January 6, 2004 5:51 PM CST

James had his second round of chemotherapy today. Yesterday, it did not affect him (in ways we could see). He remained in good spirits and ate fairly well.

Today, he woke up trying to throw up. He has not had a very good appetite.

Tomorrow at 7:30 am, James gets his radiation. At 8:45, Sarah has surgery to implant her catheter in her leg. They will use that to take the stem cells out of her on Thursday.
After her surgery, Sarah will be admitted to the 9th floor, but will not be able to see her brother. (He is in isolation.) So, mom and dad will run down the hall to switch off between kids.

We have had our favorite nurse and PCA on duty the past two days, so James has been very happy. We are hanging up his monkey collection from vines right outside his room. It is creating quite a stir...

Friday, January 2, 2004 7:04 PM CST

"The LORD will guide you continually, watering your life when you are dry and keeping you healthy, too. You will
be like a well-watered garden, like an ever-flowing spring." ~Isaiah 58:10-11~

Good evening, friends. We had an uneventful trip to St. Louis, which is excellent, considering Sarah got carsick on the way home from here.

The move into the apartment was much smoother than last time. Sarah and James (and Jim and I) love it here. We are on the 20th floor and have an awesome view of the city. Plus, there are lots of cable channels, including Cartoon Network, which made James happy. He and his sister also had a pretty exciting game of hide and seek, with lots of new places to explore and hide.

Sarah and James both have a bit of a runny nose, so pray it is allergies and goes away quickly!!!

Wednesday, December 31, 2003 7:41 PM CST

Happy New Year! We are praying for a cure-ful new year for James and our friend, Tyler. (see the link to Tyler's page below)

James went to St. Louis today. He was cultured for RSV, and that was negative! We leave for St. Louis on Friday January 2. James will be admitted to the hospital on
January 4. Chemo is scheduled for January 5 and 6. Radiation will be the 7th (as well as Sarah's surgery to put a catheter in her leg). The stem cell collection will be the morning of the 8th, and James should have his new stem cells infused in the afternoon! Then, we sit and wait for the miracle to take place!

We will post prayer requests tomorrow.

Saturday, December 27, 2003 4:45 PM CST

Well, it has been a good and bad day. Dad seems to be over his virus, but James now has diarrhea. Please pray that he is soon over this virus.

We did get a walk in today with our friend Mark. He is taking care of our dogs while we are away, so James got to see his puppy again today. He was very excited to walk her. Boy, has she grown!

Friday, December 26, 2003 8:04 PM CST

"The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the One and Only, who came from the Father, full of grace and truth."
-John 1:14

Merry CHRISTmas to you all.

Today was a fairly good day for James. His energy level is high, and his appetite is improving. He has not thrown up all day.

Unfortunately, James dad is sick today, with the stomach virus that has plagued the rest of us.

James has an appointment scheduled for December 31 in St. Louis. They will be doing lab work and culturing his nose for RSV. If that is negative, we will return to St. Louis on January 2. James goes inpatient on January 4 and the transplant is scheduled for January 8.

Praise Reports:
-James seems to be over the stomach virus.
-Mom managed to take care of James' new broviac port, since Dad couldn't do it today. She even managed to do weekly maintenance.
-James and Sarah had fun today playing with Sarah's new Easy Bake oven!

Prayer Requests:
-That we will all stay healthy, so that the transplant can go ahead on the new schedule.
-That Dad will quickly get over his virus.

Thursday, December 25, 2003 9:11 AM CST

"The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the One and Only, who came from the Father, full of grace and truth."
-John 1:14

Merry CHRISTmas to you all.

We have had a great day so far. Yesterday was a very bad day for James. He was throwing up in the morning, and didn't want to eat all day. He was having bad cramping, too. We aren't really sure if he had a virus or there was another cause. His bloodwork yesterday was "good."

This morning, James woke up feeling wonderful. He has eaten breakfast and we have opened our presents.

We will rest today and then resume the preparations for leaving for St. Louis on January 2. James goes inpatient on January 4.

Praise Reports:
-We all seem to be over all of our illnesses! Yeah!
-We all loved every gift we received. There has been NO WHINING yet today!
-Despite receiving every toy in the store, James still understands what Christmas really means, and keeps reminding his sister.
-God's timing is perfect. What a wonderful gift to be given--a chance to have a peaceful Christmas at home.

Prayer Requests:
-That those who visit this site who do not know Jesus as their Savior will accept Him today.
-That we will all stay healthy, so that the transplant can go ahead on the new schedule.

Friday, December 19, 2003 5:01 PM CST

James is receiving his second day of chemotherapy. He receives one more day tomorrow, and will likely be home on Sunday.

James will be receiving a transfusion later today, since his red blood count is low. This is the first time he has ever received one.

St. Louis called to confirm our new dates of admission. We will go in on January 4, and the transplant will occur on January 8.

Prayer Requests
-Pray for a safe transfusion for James.
-Pray for healing for James, Sarah, and Mom. James still has his cough. Sarah and Mom still have cold symptoms, and Sarah now has a GI virus. We need quick and complete healing from these viral infections!
-Pray for peace for Jim, who has had to stay with James nonstop at the hospital since Wednesday, since Mom is sick. Sleeping at the hospital is hard for him.
-Pray for a nice visit with Grandma and Grandpa for Sam.

Thursday, December 18, 2003 1:50 PM CST

James is inpatient at Carle Hospital receiving chemotherapy. His first dose was this morning, so he probably will not come home until Sunday morning.

James received an anti-viral medication last night to help fight off the RSV that he has.

We have not received an update yet from St. Louis, but believe that the plan is for us to return for the transplant the week of January 5.

Sam is at Grandma and Grandpa's house, because a child in his preschool class has the chicken pox. They promise to spoil him with lots of attention.

We are getting a great deal of snow here at home. I hope it lasts until Sunday, so that James and Sarah can enjoy it together.

Tuesday, December 16, 2003 2:49 PM CST

The transplant is off for now.

James had his surgery yesterday to put in a "double lumen broviac port" and take out his other port. During surgery, they cultured his nose and found he has RSV. Both he and Sarah are doing a lot of coughing and nose blowing.

They discharged James yesterday afternoon. We returned home today.

James will be admitted to Carle Hospital on Wednesday for inpatient chemotherapy, with the goal of keeping him in remission until he and his sister are healthy again. The new tentative transplant date is January 8.

Please pray for us to get over our sicknesses!

Monday, December 8, 2003 9:30 AM CST

Welander Prayer Requests
Week of December 8

Monday—James has a dentist appointment. Please pray he has no cavities or other problems that would require action before his transplant. His hearing test was rescheduled for Wednesday.
James and Sarah both have runny noses. Please pray this is not a virus or bacterial infection.

Tuesday—We travel to St. Louis for a meeting with a psychologist, the radiation oncologist, and for lab work. Sarah will also be getting her “pre-transplant” lab work done. Please pray that Sarah and James have the same blood type and that they are both CMV negative. (Both of these things will make the transplant “easier” and “safer.”)

Wednesday—James has a hearing test. His chemotherapy regimen can affect hearing. Please pray that his hearing is normal.

Thursday—James has a bone marrow aspiration and spinal tap. Please pray that these two procedures are painless and that no cancer cells are found in his marrow or spinal fluid. Please pray for Dad’s strength during these two tests.

Friday—We again travel to St. Louis for physicals for James and Sarah and one more meeting with the transplant team, where we will be asked to sign the consent forms. Please pray that both Sarah and James are determined to be healthy and ready to begin the process.

Saturday—One last day to pack and spend with the entire family.

Sunday—We are off to St. Louis for “Day –5.” Here we go…

General Prayer Requests
Please pray for safe travel to and from our appointments.
Please pray that all of the details of childcare, etc. get worked out smoothly.
Please pray for wisdom for the medical staff treating James and Sarah.
Please pray that as we meet with the doctors, we can keep our focus on God, the mover of mountains, rather than the mountain before us.
Please pray for Sam, that during this time of being away from all of us, that he does not feel “abandoned.”
Please pray that the entire family and those taking care of our kids stay healthy, with all of the viruses going around at this time.

Praise Reports
The Chaplain in the Bone Marrow Unit is a PC USA Pastor who supports our prayer requests. (doctors joining us for prayer before the transplant, etc.)
The doctors understand the “spiritual” nature of the healing process and are willing to pray with us.
A wonderful friend has agreed to take care of Sam during the week Sarah is in St. Louis with us.

Wednesday, December 3, 2003 5:30 PM CST

We have had 3 long days so far this week. Monday, James had a full day at the Clinic. They even had a birthday party for him! Speaking of his birthday, we have gotten roughly 200 cards from all over the world! Thanks to everyone for the cards, stickers, presents, etc. We will put a picture of James and his cards up later this week, along with a GRAND TOTAL.

James CT scan shows no tumors! Hurray! Now, for the next steps...He has several tests scheduled this week and next. His sister does also. If all tests go well, James is scheduled to get his new marrow on December 18. We have been singing, "All I want for Christmas is my new stem cells, my new stem cells, my new stem cells..." Of course, that ISN'T all he wants...

Specific Prayer Requests:
-That all of the testing the next week and a half goes well and that James and Sarah are both healthy to transplant.
-That Mom and Dad work out all of the minor details of dog and cat sitters and major details of Sarah and Sam sitters.
-For wisdom for all of the medical staff who have been and who will treat James and Sarah.

Thursday, November 27, 2003 4:33 PM CST

Happy Thanksgiving! We have so much to be thankful for--good doctors, Sarah is a match, James is home, and we have a great bunch of loving friends and family!

James was in the hospital from Monday-today receiving his 2nd round of chemotherapy. He did so well that the doctor joked that he was going to check the i.v. bags to make sure they actually gave him the chemo drugs! His appetite is still not back to normal, but he is eating some foods (beef jerky, microwave popcorn, and grapes).

We need to be very, very careful the next two weeks to avoid infection. James may need a transfusion next week, because his hemoglobin is already getting low. His energy level is still good, however.

The "plan" is that he will have a CT scan, x-rays, bone marrow check, and spinal tap in the next two weeks. The Dr. wants it all done by December 12. If James is in remission, we will then leave for St. Louis for the transplant. We have been told that most children stay in the hospital inpatient around 40-60 days, but that we must remain in the St.Louis area for approximately 100 days. We will find out more information on Tuesday when we meet in St. Louis with the transplant team. In the meantime, we are trying to "plan" and "organize" our lives, in preparation for an extended stay away from home.

Tuesday, November 25, 2003 5:42 AM CST

Yesterday, James went into the hospital for his scheduled in-patient chemotherapy. As of last night, he was feeling "okay" but didn't want to eat. He did get sick one time yesterday. He will likely get out on Thanksgiving day.

Now for the great news--we found out that Sarah is a perfect match for James! Jim and I will be going to St. Louis next week to discuss the procedure with the transplant team.

Praises:
-Sarah is a match!!! Wow! What an answer to so many prayers!
-James seems to be handling chemo well so far.
-We had a great 3 day weekend, with much excitement and activity.
-We have received over 50 birthday cards from all over the country. James and Mom will be opening some today and figuring out on the map where people live.

Prayer Requests:
-For the chemo to kill every cancer cell in James' body. He will have a scan in two weeks to see if he is in remission.
-For the chemo to not have any negative side effects.
-For mom and James to have a fun day today. (Mom's turn at the hospital) and for Dad to have some peace and calm with the 2 "little ones."

Saturday, November 22, 2003 9:25 AM CST

What a fun day we had yesterday.

We went to Brookfield Zoo in Chicago. After the zoo, we went to the Rainforest Cafe in Schaumburg and celebrated
James' birthday in advance. The picture above was taken at the Zoo.

Today, James and Dad may go to the Prairie Aviation Museum Christmas Open House. James loves that museum.

Sunday, we are celebrating Thanksgiving a little early with James' aunt Lorie and cousins Nick and Will.

On Monday, James begins inpatient chemotherapy and Carle Hospital in Urbana. He will likely be inpatient until Thanksgiving Day.

Praises for Today:
These are so numerous, I will limit myself to 5!
-We had a great day yesterday at the zoo and at the Rainforest Cafe. I even forgot my coat, and yet I wasn't cold at the zoo!
-James favorite animals are monkeys. The monkeys at the zoo were especially active yesterday, even the sloth! The zookeeper stationed in the monkey house was especially nice and was very surprised at how unusually active the monkeys were. It must have been one of God's birthday presents for James!
-We are receiving lots of cards for James' birthday from all over the country.
-James is feeling great and his sense of humor and imagination are at their "normal" levels.
-It promises to be another beautiful day here--sunny and warm.

Prayers for Today:
-For our continued strength and ability to live in the moment without worrying about the future.
-That the chemotherapy next week will do its job with minimal side effects.
-For our friend, Tyler, to have good results from his CT scan on Monday.

Thank You,
Patti

Friday, November 21, 2003 6:25 AM CST

We are hopefully off to Brookfield Zoo this morning. I am
ready, but none of the kids are up yet!

James treatment yesterday went fine. His blood counts are so high that the doctor moved up his scheduled ICE Chemo treatment to next week. He will go in on Monday, November 24 and probably return home Thanksgiving Day. So, we are
trying to get some fun packed into this weekend. We may celebrate Thanksgiving this weekend, since James LOVES turkey, and will most likely not be feeling too much like eating on Thanksgiving. Also, any big parties for his birthday will likely not happen, since his blood counts will be too low. Oh well. That's what moms get for trying to plan...

Praises for today
-James had a good day yesterday. Our friend, Jodi, came over last night and helped him build a storage unit for his closet. He got to use the power screwdriver, which was a big thrill for him.
-Jim is off for two weeks, so we are getting to spend time together as a family and he has been able to take James to his appointments.
-The weather has been beautiful here, and we have gotten to spend a lot of time outside.

Prayers:
-That the treatment next week will do its job (kill the cancer cells) without unmanagable side effects.
-That God will give us strength as we continue to find out new information about this disease and its treatment. It's a lot scarier this time than last time.
-That the doctors treating James and consulting on his case would have wisdom, to know the best treatment for his particular case and that they will be open to His guidance.
-That Jim and I can put this out of our minds and truly enjoy the day today at the zoo with the kids, without thinking about cancer and chemo.

Wednesday, November 19, 2003 4:11 PM CST

"He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary. They will walk and not be faint." Isaiah 40:29-31

Wow! What a fun day!!! I am weary, from RUNNING after James.

James has an inpatient (at Carle in Urbana) stay scheduled for December 2-4 for the "ICE" chemo that made him feel so yucky in St. Louis. (I think "yucky" is a medical term?) He will receive his other drug treatment tomorrow (Thursday) and next Friday. His blood counts are doing well, so no more shots for now. We also have an appt next Tuesday to meet with the transplant coordinator in St. Louis.

Today, James decided he wanted to make a video, "Batman meets Cinderella." All 3 dressed in their Halloween costumes, and poor Jim had to be the Joker. It is quite a funny 10 minute video. In the afternoon, he played outside and we walked Pequena and James took some pictures.

Thanks all for your prayers for our strength. I can feel it today!

Tuesday, November 18, 2003 9:03 AM CST

Well, James had a dr. appt yesterday. He had more blood cultures, since they are concerned that he has an infection in his port. This would mean iv antibiotics (which I assume would have to be done in the hospital).

Prayer Requests:
-That James has NO INFECTION anywhere.
-For continued strength and energy for James.
-That Sarah is a marrow match and we find that out soon!

Sunday, November 16, 2003 8:21 PM CST

James is home! He returned this afternoon, after 48 hours of driving the nursing staff crazy with his stuffed monkeys and stretchy lizard.

James' blood counts are going up steadily, which is great.

We are thankful that
-James is home and will be able to celebrate his Mom's birthday with her on Monday.
-We received excellent nursing care at the hospital.
-Our friends and family continue to be a huge source of support to our family.
-James' appetite is growing.
-Mom has a renewed sense of peace and strength.

Prayers for this week:
-That we will be able to have a few small family "adventures."
-For wisdom and compassion for the medical staff.
-That the medical staff will be open to God's guidance in James' care.

Please add a prayer of healing for our friends, Tyler and Brian. Thank you!

Friday, November 14, 2003 7:32 PM CST

James is in the hospital. He went in for a treatment today, and since his temperature has been fluctuating between 99 and 101 and his ANC is 60, the dr. decided to keep him in the hospital. Since he was hospitalized this afternoon, he has not had any fevers.

Sarah and Sam are going to visit Grandma and Grandpa Ramer for the weekend.

Prayers for Today:
-An end to the fever, and no viral or bacterial illness.
-Wisdom and compassion for the medical staff.
-A successful treatment today with minimal side effects.
-Continued good appetite for James and good spirits despite being hospitalized.
-Rest for Mom today while at the hospital.
-Safe travel for Sarah and Sam.

Wednesday, November 12, 2003 8:15 AM CST

Yesterday was such a fun and busy day, that I didn't even
have time to post!

Our friend, Marca, came to visit in the morning. James taught her all about The Justice League.

In the afternoon, James' friends, Bryce and Will (pictured above) came to visit. They ran around the house at full speed and played for over an hour. James had so much fun.

Then, our friend, Jodi, came over at night with a Dinosaur Dig kit. She and James spent hours excavating dinosaur bones from a block of clay.

Overall, James felt great. He is still not eating very well. He takes a few bites of food and says that he is full. I successfully gave him a shot yesterday, under the supervision of a great nurse from our church. I was pretty proud of myself!

Praises for today:
-We are receiving a huge amount of support from our church and the entire community. The guest book entries have really brightened our days.
-James had such a great day playing yesterday, that I felt very encouraged about the future.
-James is excited about his birthday, even if his party will be in Illinois.

Prayers for today:
-that James will be able to eat a lot for the next two days. He may get sick from his treatment on Friday, and I want him to have a couple of good eating days first.
-For my continued strength to give James shots and give him medicine (which almost makes him throw up when he swallows it).
-For our health. Jim and Sarah are sick with colds.

Monday, November 10, 2003 6:08 PM CST

Corrie ten Boom writes, "When the train goes through a tunnel and the world gets dark, do you jump out? Of course not. You sit still and trust the engineer to get you through." Max Lucado writes, "Next time you're disappointed, don't panic. Don't jump out. Don't give up. Just be patient and let God remind you he's still in control."

Today was a day of trying to be patient and remembering that God is still in control.

James went to the clinic today for a shot of growth hormone, to keep his blood counts from bottoming out for too long. Jim got trained how to do this, and we will be giving him the shots at home daily. (hopefully with help from our church nurses...) James has felt fairly "pukey" all day and hasn't eaten much.

Sarah went along and had her blood test. She was proud that she didn't cry, although Dad reports she got a little too rowdy at the clinic. (I heard that you were responsible, Gary!)

Praises for today:
-We are home!
-We received delicious soup from a neighbor.
-Sarah and Sam are home.
-We are fairly sure we will be doing our follow-up close to home with the people at Carle, who I sincerely call our "family."

Prayers for today:
-for James to feel better and be able to eat more.
-For Sarah to be a match for James. (that's the big one)
-For health for the rest of the family, so that we can care for James and not pass on any illness.

Sunday, November 9, 2003 4:12 PM CST

WE ARE HOME!!! The photo above was taken when James got to hold his puppy Pequena again.

They removed James' chest tube yesterday. He was able to
get up, and we went to the rooftop garden at the hospital. He loves to sit in the round windows there and
look out onto the park below. It was cold, and our iv low
on batteries, so we didn't stay long. Then, he came inside and painted (standing up) in one of his coloring books. Last night, he sent me out for a Happy Meal, which
he ate some of, and then we had ice cream at the Dairy Queen downstairs. I got a funny picture of him trying to eat an ice cream cone while wearing an isolation mask.

We have an appointment on Friday in St. Louis for outpatient chemo. We may be able to do these in Carle in Champaign instead. (that is our hope. we miss them!) If not, we are going down on Thursday and going to the zoo, if the weather is nice enough.

They released us today, and we arrived home this afternoon. James sister and brother will return tomorrow.

Keep up the prayers! We sure can feel them.

Saturday, November 8, 2003 1:50 PM CST

"This is the day that the Lord has made. Let us rejoice and be glad in it."

I woke up with that verse going thru my head this morning. As my new friend, Loretta, says, "Praise is our greatest weapon against the enemy."

James had a huge day of chemo yesterday. He had chills last night and was treated with Demerol. He also threw up a lot. He gets G-CSF today, but no chemo.

Preliminary, preliminary findings on the spinal fluid was that it is negative for cancer cells. Complete pathology won't be back for a few days.

The dr. was in today and said that James' lab tests are doing fine in terms of metabolic function--meaning the chemo isn't harming his organ function. He also ordered his chest tube removed, and a dr. showed up minutes later and removed it. James is very happy, because now he may be able to leave the room. He hasn't been out of bed since Tuesday.

For those of you from Carle, we still like YOU best. James misses Jeri, Melissa, Gary, Sara, and Sherri. (He hasn't mentioned missing Dr. M...) For those of you who are medically inclined, James' chemo regimen is Ifosamide, Carboplatin, Etopside (VP-16) every 3-4 weeks and Rituximab weekly.

Praises for today:
-Our roommate was well enough to go home, although I will MISS him and his mom a great deal.
-James seems to be perking up, talking more, and feeling better.
-I got GREAT sleep last night at the hotel. (They had told us they only had a room for one night, but when they saw my "crazed mother" look, they found us a room for the week...)
-We had a flat tire on our car when I went out to use it yesterday, for the first time since we got here. Praise God it didn't happen on the way here, when I was alone.
-James told me last night that he is not scared.

PRayers for today:
-That James continues to make enough progress to be sent home next week.
-For Jim and I to have continued strength and faith.
-That our families feel God's loving arms around them. It has been especially hard for Jim's mom and dad, who live in California. My dad, too, is having a hard time coping.
-That the chemo continues to kill the cancer in James' body and that he be in complete remission soon.
-That Sarah is a match for James.

Friday, November 7, 2003 2:35 PM CST

Praise is the best weapon against the enemy.

Good afternoon. James just finished receiving chemotherapy into his spinal fluid. At the same time, they took fluid out, to test it for cancer cells. Please pray with us that no cancer cells are found there.

James will receive additional chemotherapy this evening. He is feeling a bit weak and lousy, I think. So, prayers for his comfort. He doesn't really feel like eating, either.

Praises for today
-We have a wonderful roommate, whose mom has a beautiful voice and a great love of God. She sang her son to bed last night in a beautiful gospel voice, singing a variety of hymns. It provided me a lot of comfort. When I was stressed out today, she gave me great counsel.
-James had a wonderful evening last night, watching Finding Nemo and eating popcorn. After, we stayed up late talking
and he was quite entertaining.
-Our friends, Gary and Diane, from Carle stopped by for a visit today and really perked James up.

Prayer Requests
-For no cancer to be in James spinal fluid.
-For successful chemotherapy treatment, with minimal side effects.

Thursday, November 6, 2003 12:52 AM CST

"Let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith." Hebrews 12:1-2

Friends,

Well, our "Race" that I thought was a 100 yd dash has turned into a marathon. However, with your prayers
and support (and our BIG, BIG GOD) we will again run it with endurance.

Here is what we found out yesterday:
James has Burkitt's Lymphoma again. Most kids who have an initial presentation (single tumor site) like James who receive the same treatment do not relapse. Yes, we are surprised (blind-sided actually) and I believe the
doctors are too. This is the same kid who just one week ago was making Pastor Mark chase him (while he ran nonstop) through the pumpkin patch and corn mazes at the apple orchard and who went trick-or-treating on Friday until his bag broke!

James has two tumor sites. One in his abdomen on the liver and one in his chest near the heart. We were sent
to St. Louis, because our doctor is in Dallas at a conference. They began chemo here last night. He is receiving a completely different regimen than before. These are much stronger drugs with much more serious side effects. We heard today that they may suppress his immune system for 6-12 months. The immediate need is to shrink the tumor(s) in his chest, which are causing breathing problems. He is currently in the ICU and will remain there today, so that his breathing can be monitored.

He will receive chemo for the next three days. The plan is for about 3 months of treatment, with the goal of
putting this into remission. The only permanent "cure" at this point, would be a bone marrow transplant, which
can only be done if he is in remission. Sarah would be the best match, so they will be meeting with us to discuss getting her blood tested as soon as possible. Still, it is only a 1 in 4 chance that she will be a match. If she is
not, they will look to the National Registry. Some have already asked about getting on this, and I will get more information soon.

Max Lucado writes, "Do not measure the size of the mountain; talk to the One who can move it. Instead of carying the world on your shoulders, talk to the One who holds the Universe on His. Hope is a look away." These are the words I am choosing to live by today.

Praises for Today. We are thankful for:
-a quick diagnosis and a quick start to treatment.
-the outpouring of support and prayers.
-our church family, who had a prayer service for James and is organizing a 24 hour prayer vigil.
-the fact that I remembered to pack the underwear this time.
-a safe drive for me and a safe ambulance ride for Jim and James.

Prayers for Today:
For the chemo to work quickly to shrink the tumors.
For James' peace. He seems okay emotionally so far, but I know he will be upset when he figures out his
birthday trip to California will have to be postponed.
For strength and faith for Jim and I.
For a painless blood test for Sarah and that she is a match for James.
-For a move from Intensive Care to the Oncology unit, so that we can sleep in James' room. One of us will
sleep in the lounge in the meantime, and believe me, they need to pass out "Breathe Right" strips to some of
these Dads!

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