Heart-warming story!

I was reading Sports Illustrated tonight, while on the couch watching the Tigers game. Under the one page section "Faces in the Crowd" was a brief story about a high school sophmore, from Michigan no less, who was diagnosed with Medulloblastoma this year, and is still her High school team's starting pitcher in softball (while undergoing chemo and radiation). I googled her name and had the pleasure of reading her story. It's rather long article, but I feel the story is so important. I know it sure lifted my spirits. Here it is:

Winning spirit
Posted by Chris Iott The Citizen Patriot May 18, 2008 08:00AM
Categories: Top Photos

CITIZEN PATRIOT • DAVE WEATHERWAX
Emmarie Truman, 15, provides a little off-the-field entertainment with a dance in the dugout during a game against Northwest. She pitched the second game of the doubleheader.
Emmarie Truman has found a benefit to being bald.

"I think they might be intimidated by me," the Jackson High School softball pitcher said of opposing batters. "They might not know that I went through what I'm going through."

She's been through a lot.

In January, Emmarie found out she had a brain tumor. Days later, doctors removed a cancerous growth about the size of a small lemon.

Less than two months later, she made the varsity softball team as a sophomore.

Emmarie spent a week in Mott Children's Hospital in Ann Arbor while awaiting and recovering from surgery. She has made repeated trips for treatments since. While receiving radiation, her jaw tightened up, which made it tough to eat, drink or swallow. She has suffered at times from extreme fatigue, headaches and vomiting.

"The girl will come down here after chemo on Tuesday, and if she doesn't have a bad reaction to it, she'll be here on Wednesday," Jackson coach Jim Kolb said. "If she does, she'll be here on Thursday, glove in hand, ready to go."

Even when Emmarie took a break, she couldn't catch a break. On her first day at the beach during spring break in Florida, she was stung by a jellyfish, which led to a trip to the emergency room.

All this would force 15-year-olds to take some time off from sports -- if not school. But Emmarie is no ordinary 15-year-old.

A few years back, Kolb had a starting pitcher show up for a Saturday tournament with her nails already done for the prom that night. She asked to spend the day on the bench.

Kolb can't keep Emmarie off the field.

"She sat here one night and argued with me in the dugout about not playing," Kolb said. "She had chemo on Tuesday, and it was a Thursday night. She was like, 'I'm ready.' "

Emmarie underwent surgery Jan. 18. Doctors found that she had medulloblastoma, a fast-growing form of cancer in the cerebellum that often spreads to other parts of the central nervous system.

Eight weeks later, and four days before she completed her 30th and final radiation treatment, Emmarie made the varsity team.

Emmarie doesn't bat or play another position when she's not pitching, mainly because Kolb wants her to save her energy. She shares starting pitching duties with junior Amanda Rogers.
Emmarie is 5-5 with a 3.19 earned run average in 25 games this season for a 19-10 Jackson team.

"She's something else," senior first baseman Krissy Smith said. "Despite everything she's been through, she comes out here and she is the bubbliest, the funniest, one of the nicest girls out here.

"I'm not lying when I say she brightens my day."

Finding out about cancer

Emmarie and her parents, Allen and Elaine Truman, can see now that she was showing symptoms of cancer long before surgery. First, Emmarie complained on and off of having a sore neck.

"That probably went on a little while -- one month, two months," Allen Truman said.

Then on a Saturday morning in January, she had trouble getting out of bed.

"I just slept and slept," she said. "Finally, I got up because I felt sick, and I just ran to the bathroom, because I thought I was going to throw up. Then I physically couldn't get off the bathroom floor."

She spent most of the day vomiting then sleeping, vomiting then sleeping, vomiting then sleeping. Late in the day, she made a visit to an urgent-care clinic, where she received a shot to help with dehydration.

Two days later, while walking from Jackson High School to her home on Washington Avenue with her boyfriend, Peter Campau, Emmarie had another sign that something was wrong.

"I was like, 'I don't think I can walk,' " she recalled. "I was just standing there, and he said, 'Are you sure you're OK?' I said, 'Yeah.' "

She wasn't OK.

"I just collapsed on the ground," she said. "He had to carry me home. That was when it was kind of scary, because I really could not move."

Emmarie immediately made a visit to Dr. Souha Hakim, a Jackson pediatrician, who noticed her feeling around for the floor with her foot as she tried to get off the examination table. Emmarie's depth perception was so messed up that she was having a difficult time finding the floor.

Hakim suspected Emmarie had a tumor or meningitis and sent her to Foote Hospital for an MRI. Emmarie was admitted the following day, a Tuesday, to Mott Children's Hospital and underwent surgery on Friday.

Doctors quickly diagnosed a brain tumor but didn't think Emmarie was in any serious danger. Elaine Truman recalled a conversation with Mott neurosurgeon Karin Muraszko.

"She said, 'As tumors go, you have the lottery ticket of tumors,' because she was so sure it was benign," Elaine Truman said. "That's why they left her surgery until the last one on Friday. They kept putting other kids in front that were worse cases -- they thought."

They put Emmarie under at about 11 a.m. that Friday, and surgery began about two hours later. Her parents were updated every two hours.

At 9 p.m., they got the news.

Cancer.

Dealing with treatment

Doctors tell the Trumans there is an 85 percent chance Emmarie will never have medulloblastoma again. But keeping cancer from coming back is hard on the body.

Emmarie underwent 30 radiation treatments in the two months following surgery. Two weeks after surgery, she had lumbar puncture surgery -- a spinal tap -- which showed no cancer cells in the central nervous system. She continues to go through cycles of chemotherapy that are scheduled through March 2009.

Her schoolwork has suffered. A straight-A student before cancer, Emmarie missed several days of school during surgery and recovery. Her last report card had some B's and a C, Elaine Truman said.

Emmarie is active in extracurriculars. She is the sophomore president of Mark Pride, a school spirit group, and is involved in yearbook. All this and athletics leave her little time to contemplate any fatigue or discomfort she might feel from treatment.

"I just kind of tell my body to shut up and make myself do things," she said.

Emmarie 's parents are inspired by her attitude. So are her doctors.

"She's really inspiring," said Mott neuro-oncologist Patricia Robertson. "I've had kids who were in bed the whole time that they're undergoing this or having to be admitted to the hospital because of side effects."

Said Elaine Truman: "She's not going around acting like a cancer patient. ... She's not taking the victim mentality."

Tough times

Emmarie did her best to stay strong even when times were tough, including when she began to lose her hair.

"She didn't tell me the first time she got a gob of it out in the shower, because it bugged her so much," Elaine Truman said. "She couldn't talk for a couple days. She barely said anything.

"She started losing it on a Tuesday night, and that Friday night she came to her dad and said, 'Will you shave my head for me?' "

Emmarie said going bald was an easy choice.

"I was losing it," she said of her hair. "My hairline was pushed back like two inches. I'd look better without it. No matter how bad it looked, I knew it would look better than it did."

Emmarie, who doesn't wear a wig or a hat, puts a positive spin on her baldness.

"It has made me stronger, definitely," she said. "It's almost made me a little more confident in a way, because if I can still be myself without hair ... then I'm certainly sure I can once I have all my hair back."

Another rough time was when, in the days that followed surgery, Emmarie saw tears in her father's eyes for the first time.

"I had never cried about it really until I saw my dad cry, and I just lost it," she said. "But I was doing it because I saw my dad in a weak situation. That's the reason I was upset then."

A good example

Kolb said Emmarie has set an example that other players have followed. The effects of nicks and cuts, scrapes and sore muscles don't linger when you have a teammate who is battling -- and beating -- cancer.

Kolb mentioned his daughter, second baseman Angie Kolb, as an example.

"Every time she comes to me and says, 'I did something to my back,' or, 'I did something to my ankle,' I'm like 'OK ... ,' " Kolb said. "And she says, 'I know, I know.'

"It puts things in perspective."

Emmarie often tires in the late innings. That's when Kolb looks to Allen Truman for guidance on whether to leave Emmarie in the game.

"Every time she starts beating on her chest or shrugging her shoulders with her breathing, I have to look at Al," Kolb said. "Of course you want to win. You want to win, and if she's throwing good ... it's delicate. It really is."

Kolb faced the dilemma during a recent doubleheader against Grand Ledge. Emmarie struggled a bit in the seventh inning, and Grand Ledge mounted a rally. Jackson still led, but the outcome was in doubt.

Kolb went to the pitcher's circle. Emmarie 's part of the conversation could be heard by the fans in the bleachers.

"I really am fine," she said boldly to Kolb and her teammates before getting out of a bases-loaded jam to finish off a 6-4 victory, the first Jackson win over Grand Ledge in five years.

"I've had pitchers in that situation who would have crumbled, who would have started rolling their eyes and patting their mitt," Kolb said. "She just keeps chucking it. She's a competitor.

"Even in losses -- if she would have given up that game, you wouldn't have seen a change of emotions. She just would have said, 'OK, we'll get 'em next time.'"

That is how Emmarie deals with tough situations. Leave the past in the past. Appreciate the present. Look forward to the future. No matter how tough things are.

"I think that my radiation was the one thing that I just absolutely could not stand," she said. "That's pretty much it. My chemo was bad, but now it's gotten so much better. Everything's just gotten better.

"I've gotten used to everything, so it's not that big of a deal anymore

Fathers Day

Today is Fathers Day, and Kevin has been feeling good. So all is good, and I couldn't ask for more. We celebrated yesterday since I'll be leaving early this afternoon. Ronald McDonald House (RMH) had a carnival yesterday morning. Kevin and I took a shuttle to attend, and we had a really good time. They had a moonwalk, as well as an inflatable giant slide. He was able to have some fun in small doses. He can play like most, but tires out and needs to have rest intervals. They also had a really cool bowling game. After round one of playing, Kevin took me inside RMH to show his hand-print from when he left last time. It was nice to see, and it was right next to Will's. He wanted a break from the heat, so like old times at RMH we sat in the t.v. viewing area (in the middle of the giant kitchen area) and watched scome sponge bob. He even had some microwave popcorn and soda. After one episode we went back outside to the Carnival and Kevin had more fun. He also made me a cool Father's Day visor, and put Love "Bob" on it. He has not lost his sense of humor. The Zofran has curbed his nausea the last couple of days. He even ate a full microwave bowl of Ravioli yesterday. On my end it was just fantastic to see him. Since Rachel's entire family is here (Mike, Scotty, and Jake) Kevin and I stayed at the Target House while they stayed in the apartment they got for visitors. It was good to be "thrown to the wolves" with his TPN and everything. Now it's a piece of cake, and Kevin himself complimented me, stating it doesn't hurt at all, and I do it very fast. I guess the hospital wouldn't have us bite off more then we can chew. The only lesson I've not officially recieved is changing his dressing. I'll make sure to get that done when chemo starts and he's inpatient. How time flies. It seems like yesterday that he just had his first cycle.

Take Care,

Eric

Pictures of the last couple of weeks

Welcoming the weekend

Kevin's had a very busy week, including some rough spots. Rachel wrote in detail what happened during the procedure of which they harvested more stem cells. I don't deal so well with blood, so I'm glad Mike & Rachel were there instead, as I probably would've become sick. He's still pretty sore from the incision in his groin where the cathetar was inserted. He's not real comfortable walking long periods of time as I think the friction irritates the area. I'm hoping he improves throughout the weekend. I was back in Michigan Monday through Thursday evening, but Rachel said Kevin did pretty well overall. He's still not eating much, but she said he's not experienced much nausea either. That is until this morning with me, of course. He became pretty sick, with nothing of note to instigate it (no food or medicine yet). He was taken off his Zofran (nausea medicine) a couple days ago, so with this morning's incident we've started him back up on it. Another scare took place today after his functional MRI. Rachel received a call from the Physician's Assistant (we really like him) indicating he needed to come back in for a CT Scan. It seems the radiologist saw enlarged blood vessels in his head from the MRI. He consulted with Dr. Gajjar, Kevin's Neuro-Oncologist, and the head of Kevin's entire protocol. They decided to get the CT Scan, which is more accurate for looking at blood vessels then an MRI. After the scan they said we were free to leave and the would call us with the results. Kevin was very excited to see Kung Fu Panda, and it looked like with the possible complication he may not get his simple wish. You see, Kevin's not supposed to really frequent public locaions for long periods of time, especially if there are a lot of people there. The doctor gave us the okay to go to a movie if it's the middle of the afternoon, and he sits away from people. Since it was almost 4 p.m. we feared we were running out of movie theatre's slow time. Luckily, the CT scan took all of 5 minutes and we were out of there shortly after 4. Rachel and I agreed a 5 p.m. movie should still be away from prime time. Thankfully, there weren't many people there, and we sat a couple rows away from anybody. Kevin and Scotty both loved the movie. The movie really put Kevin in a good mood. We came home afterward, and for the first time in a while, he wanted to stay up late. With no appts tomorrow, I let him stay up until 10. It was just really nice to see him have the energy to actually stay alert past 8:30 or so. Rachel and I both kept our cell phones on vibrate waiting for any news on his CT Scan. At 9 p.m. neither of us had heard from anybody regarding the results. No news is usually good news, or at the very least we figured he must not be in imminent danger. Still, I wanted to hear something. I emailed Dr. Gajjar hoping to hear anything. He emailed me back within 20 minutes, indicating that everything looked fine. For some reason the MRI showed blood vessel abnormalities, but the MRI is more for review of tumors and actual brain material, not blood. Thankfully, the CT scan looked clean. I may actually be able to sleep tonight! To be honest, I don't even know what dangers or consequences enlarged blood vessels would entail.....not knowing what was going on was wearing on all of us. Dr. Gajjar has been an absolute god-send since we've arrived at St. Judes. He's answered every one of my emails when I have something on my mind. His attention to our concerns is appreciated beyond description. When we were at a certain Children's Hospital in Michigan, we seemed to often have the feeling of being left in the dark for days at a time. We had to wait on pins and needles for days to see what stage Kevin's cancer was, after the Spinal MRI, lumber puncture, and bone marrow aspiration. Whenever Kevin gets a test of that nature at St. Jude, we get results the same day, even if there' unoffical. Dr. Gajjar or one of his nurses often run into us later in the day, and let us know everything looks good. While I'm giving out praise, I should also mention we are all very pleased with his BMT (chemotherapy/Bone marrow transplant) Doctor, Dr. Hale. St. Judes may not cure every child, but they certainly go about the entire process with open communication and just an overall outstanding bed side manner. If we were somewhere else, today's events would not have even a preliminary conclusion until Monday. While we don't have all the details we'll eventually need, Dr. Gajjar made sure to let me know that Kevin's scans are fine, and that there are no problems. We're hoping Kevin gets to continue his stay as an out-patient until cycle 2 of chemo begins next Friday morning. We know the first few days of that will be rough to say the least, so we're praying he continues to have mostly good days this next 6 days. The best Fathers Day Present I can get, is that Kevin feels good this weekend, and we get to avoid the hospital until Monday.

Good Night all

Eric

Landmark Legislation is Passed

From Kate Shafer, at CureSearch:

Dear Advocates,

Below you will find the Curesearch press release announcing passage of
the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. This
success has been the result of many things but the more than 20,000
letters sent by advocates to members of Congress about childhood
cancer and this bill have been a key factor. This brings us all one
step closer to enacting a law that will make a critical difference to
children with cancer.

Thank you for your letters. Please take a moment to thank your
Representatives and continue to contact your Senators to urge passage
in the Senate.

FOR IMMEDIATE RELEASE

CureSearch Praises Passage of the "Caroline Pryce Walker Conquer
Childhood Cancer Act" in U.S. House of Representatives

Children with Cancer and their Families to Benefit from Landmark
Legislation

June 12, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer
Foundation salutes the United States House of Representatives for
passage of H.R. 1553, the "Caroline Pryce Walker Conquer Childhood
Cancer Act," which promises to significantly increase federal
investment into childhood cancer research.

During markup of the legislation, the bill was renamed the Caroline
Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of
Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH),
who succumbed to neuroblastoma in 1999 at age nine.

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

"For far too long, children suffering from pediatric cancer have
gotten short shrift on federal resources," said Pryce, original author
of this groundbreaking legislation.

"The bill we passed today dramatically expands federal investment into
childhood cancer research and education, and will make an historic
difference in the lives of the more than 12,000 children who will be
diagnosed with cancer each year. A nation with our resources, our
scientists, our committed doctors and oncologists, and our inherent
and insuppressible fighting spirit can and should do more to put an
end to so much suffering."

Congressman Chris Van Hollen (D-MD), one of the original co-sponsors
of the Carolyn Walker Pryce Conquer Childhood Cancer Act, stated that
conquering childhood cancer has transcended partisan politics, and
addresses a critical national issue that is finally receiving the
attention it deserves.

"I am pleased that the House passed this important legislation, which
will bring us one step closer to eradicating pediatric cancer," said
Van Hollen. "This bill will enhance and expand pediatric cancer
research activities at the National Institutes of Health, establish a
pediatric cancer registry, and increase informational and educational
outreach efforts to patients and families affected by pediatric
cancer. No child should have to experience and suffer the effects of
cancer, and no parent should have to see their child suffer."

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

"The Caroline Pryce Walker Conquer Childhood Cancer Act allows for
translation of the very best research discoveries into clinical
evaluation and practice, in order to improve the cure rates for all
children with cancer," noted Gregory Reaman, MD, Chair of the
Children's Oncology Group. "Only research cures childhood cancer. On
behalf of my colleagues in the Children's Oncology Group and the
children with cancer and their families who are our partners in
clinical research, we thank our Congressional leaders."

"On behalf of CureSearch, we applaud the steadfast leadership of
Representatives Chris Van Hollen and Deborah Pryce and their
colleagues in the House who through the passage of this bill have made
finding the cure for childhood cancer an urgent national priority,"
said Stacy Pagos Haller, Executive Director, CureSearch.

Companion legislation in the United States Senate (S.911), sponsored
by Senator Jack Reed (D-RI), cleared the Senate Health, Education,
Labor and Pensions (HELP) Committee unanimously in November, 2007. The
Senate version of the Conquer Childhood Cancer Act currently has 63
co-sponsors; a full Senate floor vote on the bill is expected this
summer.

About CureSearch
CureSearch seeks to conquer childhood cancer, conquer it sooner,
conquer it fully and for all time. Through public education, advocacy
and fundraising, the National Childhood Cancer Foundation, a
non-profit 501 (c) (3), supports the work of the Children's Oncology
Group (COG), the world's premier pediatric cancer research
collaborative. This network of more than 5,000 healthcare
professionals dedicates their lives to finding answers and sharing
results. More than 12,000 children are diagnosed with cancer each
year, and more than 40,000 children and adolescents are currently in
treatment. Only research cures cancer. For more information, visit
www.CureSearch. org.

Pictures from Mike, Becca & Liam's Visit

Yesterday was even longer than we expected and took a scary turn around 10:30 PM when the doctor removed the catheter in Kevin's groan area. When she removed the catheter, blood started shooting out. This was like a bad ER show, it took about 10 minutes and five nurses to get Kevin held down. Kevin was freaking out, not because of the blood but because the nurses had to push really hard to get the bleeding to stop. Little did he understand that he could have bled to death. Scotty saw the whole thing and is still a little worried about his brother dying (I am getting lots of questions about death) and about this happening to him. We are working these things out with him. I think if we can reassure him Kevin is going to make it through this, Kevin and Scotty's bond will just grow deeper but I feel that Scotty needs his feelings to be validated and given a 5 year old understanding of this crazy cancer world. Mike was great through the whole thing and held pressure on where the blood was squirting out until the nurses could get things under control. I honestly think Mike handled the whole thing better than all of them. I was trying to hold and very active Jake who kept trying to get to Kevin.

I rescheduled Kevin's appointments for this morning as we didn't get home until midnight. Mike, Scotty and Kevin left for their hospital day around noon and they are still there. Not surprisingly Kevin required another blood transfusion today. Hopefully they will all be home soon as Mike said it would just be another hour or so before they are done. I stayed home with Jake as I let everyone sleep in this morning while I took care of rearranging todays schedule at the hospital. I ended up with less than 3 hours of sleep as of this morning. But Jake has been kind enough to take a long nap with me this afternoon while everyone was gone.

Kevin took some great pictures last week with Aunt Becca and Uncle Mike's camera. Here is their photo album from their trip which include Kevin's pictures.


Here is a link to the pictures for those who get updates via email:

http://picasaweb.google.com/michiganherrs/JourneyToStJude?authkey=wga_1FBx77g

Two Long Days

Monday was a very long day, 7 am to 7 pm. Rachel took the morning shift, and I took the afternoon, but Kevin and Scotty were in the hospital for the whole thing. When we finally got home, Kevin was exhausted and fell asleep pretty much right away. We hooked up his TPN while he was sleeping. He's on 12 hour cycles now, so he doesn't have to wear the backpack with pump and bag all over the hospital.

It was good for Jake not having to spend any time in the hospital, but switching off between Rachel and I didn't work too well. There was lots of confusion at the hospital regarding Kevin's schedule because his morning blood work showed that his neutrophil count was high enough to allow stem cell harvesting. So the rest of the schedule for yesterday and today (Tuesday) was changed. It also didn't help that no one could get hold of me via phone because Sprint service here is near non-existent.

To re-cap Monday, then, the colony stimulating factor (G-CSF) is working. Kevin's neutrophil count jumped up after receiving it. Kevin got a hearing evaluation in the early afternoon and his hearing is still outstanding. Then we went to the medicine room and hooked him up for more G-CSF and a bag of platelets (for blood clotting) because his platelet count was low in the morning. If you ever need to know, a bag of platelets looks like concentrated orange juice. Weird.

Since Scotty spent most of the day in the hospital, he was severely lacking in run-around-like-a-madman time. He made up for it at night by running back and forth between the kitchen and bathroom (a distance of 20 feet) about 200 times. Then another bad thunderstorm moved through Memphis and the whole family fell asleep watching the lightning flash through the bedroom window.

So here we are Tuesday, which has been another long day. We needed to harvest some more stem cells from Kevin because a few weeks back we only banked enough for 3 treatments. That was through his bone marrow. So today they got stem cells from his bloodstream. First thing this morning Kevin got a catheter in his femoral vein (on the right side in his groin). Blood from there went into a centrifuge which spun the blood at high speed so the stem cells could be separated. The blood--sans stem cells--was then sent back into his body through the central line in his chest. This lasted from noon until 4 pm. He was only sedated when the femoral line was put in this morning. Since then he's been watching movie after movie and playing his Nintendo DS.

Rachel donated platelets today at the same time Kevin was hooked up for stem cells with the thinking that she would replenish the bank with the platelets he used yesterday. But now we just found out that Kevin needs another 3/4 unit of platelets today. We just got back the results of his latest blood test and his platelet count is not as high as desired, even after getting a unit yesterday. So right now I'm typing this in the medicine room where we are waiting for a platelet match. Then that partial unit will be infused through his central line. Looks like we might be here until 9 pm ... even later than yesterday! I'm totally worn out because I woke up at 3 am this morning and couldn't get back to sleep. But it looks like tomorrow it will be my turn to give platelets.

Rachel just took home Scotty and Jake (or "Super Poligrip" as I like to call him because it is almost impossible to get him to release an object once he has a hold of it -- including hair, noses, and ears). They'll get some food and a bath before returning in their PJs.

And tomorrow? Well, we have to be back at the hospital at 8 am.

Mike

Counts up

I'm now back in Michigan, but I just spoke with Rachel by phone. It seems Kevin's counts are way up (over 4,000). This is good, but they artifically spiked by the GCSF and will come down some as they will now temporarily halt administering the shots. His immune system is good for now! I got back yesterday evening, and already miss Kevin something terrible. According to Rachel he's doing well though. He even gets a few days off this week. He still has to wake up every morning for his TPN hook up and other meds, but at least he can go back to sleep or stay cozy watching cartoons if he likes. Hopefully Rachel will post more, as she's there with him.

Eric

Good News!

It's about 8:00 a.m. Saturday morning, and about 15 minutes ago Kevin and I were woken up (as usual) for our daily update and confer about Kevin. I'm pleased to report that he's setting Kevin up for discharge today. His counts came up to 400, and his White Blood Cells spiked up far above that. Dr. Hale thinks his ANC will be above 1,000 tomorrow. So we will leave some time today! Kevin's too sleepy to celebrate, but Dad is elated. Mike's flight was delayed so many hours last night, that I don't think Rachel got much sleep. Last I heard at 9:30 p.m. his flight didn't even depart Detroit (scheduled for 5ish is believe). Kevin will have just shy of 2 weeks at the Target House before his next cycle starts.

Today's a good day

Eric

Still in Hospital--

It's about 11:30 p.m. Friday night, and Kevin's been peacefully asleep for about an hour and a half. We watched Home alone tonight. He got a kick out of the lead character also being named Kevin, and enjoyed the movie, but lost steam the last 15 minutes of the movie. Kev's done quite well today. No vomiting to report, and his attitude seemed a little better. He's sick of the hospital at this point. He's tired of the nurses waking him up every couple of hours taking vitals. Last night he even starting making a slapping motion towards the nurse's hands. I was half asleep, but promptly settled him down in the booming voice that Kevin immediately obeys. I've been pretty patient with him, but let him no in no uncertain terms, that he needs to keep his hands to his self, especially since the nurses are just doing there jobs in monitoring him. Becca and Mike have been in town several days and have been a big help to Rachel. Kevin enjoys seeing both Jake and Liam (spelling?). Becca's husband is a very nice guy that I liked immediately........
I hooked up Kevin's TPN today and felt very confident in doing so. For some reason yesterday I was nervous and was fumbling a little, probably because I had never flushed his line before. Today though, espcially since doing it 2 days in a row, it seemed almost second nature. He's down to 12 hours a day now on TPN, which is great. It means he gets a few hours a day not connected to any tubes. We used this time to take several laps around the BMT (Bone Marrow Transplant) floor, which is where most of the kids on inpatient chemo stay. He did well, but complained about walking with his crocs on. He didn't need to ask me twice. Once Rachel relieved me a the hospital around 2:15 this afternoon, I went to Oaks Mall and bought him a pair of Nike gym shoes. I can't wait for him to test the out tomorrow. Every morning we get awoken by the Doctor, and every morning she's indicated his counts (ANC) haven't risen enough. She did say since his white counts started to rise, that typically it means his ANC should follow suit. She was hopefull that perhaps tomorow morning's counts should be on the rise. Rachel and I both agree that it's not the worst thing in the world for him to be inpatient when his counts are so low. He's doing well though, and I can see him doing just fine at the Target House. Next Sunday for Father's Day, the local baseball team, the Red Birds donated a suite to the Target House. I signed up for 4 tickets (the max) so a group of us can go to the game. I'll probably take a late Sunday flight home (game's at 1) so I can make it to work the following morning. I'm still getting work done here though, and being here when he's inapatient is clearly where I belong. I'd be pulling my hair out if I was home. Looking at the calendar today it occurred to me, since May 12, I've been home exactly 1 1/2 days. I have wonderful friends, Ed and Susan Clancy, who've been taking care of things for me at my house in my absence. Thank You guys! At least my utilities should be low this month! Once again, I couldn't have done this if not for the fantastic fundraisers that have been thrown for Kevin. It's nice to be able to buy my plane tickets or rent a car, and not have to worry about the cost building up. Having one less thing to worry about has been an enormous help. In addition to the fundraisers, I've also been sent a few checks including one extremely generous one from my Uncle Tom Thank You!

The Nurses assistant just came into take vitals and Kevin awoke briefly. It's tough to see him get so upset. He usually falls back asleep very quickly, but it's still a drain on him to get woken up several times a night. Because he's so little his blood pressure is very low unless taken whil he's on his back (when sleeping). He sleeps on his stomach/side so it's always a chore getting him into position for a proper reading. He should be out soon though, and his next round doesn't start for 2 more weeks. He should have at least 12 or 13 days at the Target House before we start the cycle all over again. The protocol at St. Judes has plusses and minuses. Rachel, Mike and I feel the plusses far outweigh the minuses. The minuses being of course that he, and by extension us, have to be away from home....Also, he doesn't get much rest between cycles of chemo, so I imagine it's going to be a draining 4 or 5 months. The pluses include a better prognosis, which has been clincally proven through hard numbers.........Also, although the 4 months is going to be a struggle, he at least won't have to endure chemo for 18 months like many other protocols call for. The other protocols don't do the stem cell infusion, so they have to do much lower doses or wait much longer periods of time between cycles. If all goes well, Kevin can begin the road to recovery starting this fall as opposed to going through all of '09. St. Judes really rolls out the red carpet for the kids too. Kevin has a Wii in his room, as all patient do. They cater to the kids in every way possible here.

I'm getting sleepy.

Take Care all,

Eric

Thursday morning

Nothing exciting to report, which is I guess both good and bad depending on how you look at it. Kevin hasn't had a fever for a while, but his counts aren't going up very fast either. He's at 100 ANC again, and they need to start heading up past 500. He's probably going to be here until Saturday. He's doing well, but at times puts his foot down, especially during medication time. He knows full well that there is one oral medicine in particular that he gets ill off of 9 times out of 10. It's usually quick and over with, but he's no fool. We're hoping he won't need to take it much longer as he's had a BM two days in a row now (it's an awful stool softening med). Sometimes it takes 15 minutes of convincing to get him comply. He's actually pretty funny when the nurses wake him up in the middle of the night for vitals or blood (they do their job trying not to wake him). I wake up during these episodes to Kevin saying "you have to be kidding"! "I'm trying to sleep"!! Although I get awoken myself, I find myself trying to hold back laughter. I'll sign off now. Kevin's food is here.

Take Care,

Eric Saarela

Hospital update

Kevin's doing pretty well with his current hospital stay. He's still having a very difficult time consuming food without getting sick. I will say to his credit, he tries to eat, knowing the result will end un-ceremoniously. One of the Docors came in for her morning rounds about an hour ago. It seems Kevin probably doesn't have an infection, as evidenced by nothing growing on the culture. However, his ANC conts did dip back down to 0, and she said his temps are "flirting with normal", but they're still in the high 99's and she would welcome a small decrease. Saying that, Kevin will probably he held here until Friday. She was hoping he'd be able to leave late today or tomorrow, but they need to be careful. I think Rachel and I both agree if they have even the most miniscule of reasons to keep a close eye on him, we're fully supportive.

Last night we watched Revenge of the Sith, thus we've finished the entire Star Wars series. We skipped a couple of the age-inappropriate scenes, but he really enjoyed the movie. He picked the middle of the movie to tell me how glad he is to have me back. He must have really missed me, as I was back to Michigan a full 1 1/2 days.

Eric

Hospital

Kevin hasn't had a fever since the one time he had a temperature last night when we were in the medicine room getting ready for him to have a blood transfusion and platelets. He has since had 2 blood transfusions and only one transfusion of platelets. He seems to be getting strength back and his ANC was 100, so it is coming up faster than expected. He still will be staying in the hospital while we try to figure out what caused the fever. If we can't figure it out he will be out of inpatient by Thursday. Kevin managed to make his night nurse last night come close to crying when she was trying to give him his medicines. Today they have sent the Child Life Specialist in to work with him on being nicer to the people administering his medicine.

Jake did great spending his first night at St. Jude. He slept in his port a crib and only woke up twice (that is a pretty good night for him). Kevin appreciated having him there with him and thought that was pretty special.

Aunt Becca, Uncle Mike and Liam (my sister, brother in law and nephew) arrived late this morning. Liam and Jake are really cute together and very close in length but Jake has a couple of pounds on Liam. Everyone asks if they are twins (they were born less than 48 hours apart), and they looks at us in disbelief when we say cousins.

Rachel

Back to Hospital (back to Memphis for me)

I got a call from Rachel tonight at almost 11 p.m. As soon as I saw her name appear on my phone that late at night I knew it probably wasn't to chat. Long story short, Kevin's temperature was taken during his labs, and he had a fever. Since his counts are zero they admitted him to the hospital. From what I recall in Kevin's release from the hospital on Friday, this was to be expected at some point. His ANC counts will hit zero every cycle of chemo, and his body is left utterly defenseless from illness/infection. I spoke to him earlier this afternoon and he sounded very tired, so to say I'm surprised would be a lie. His energy has seemed to plummet the last few days. Rachel and Jacob are in the hospital tonight, and I'm flying down tomorrow afternoon. I promised Kevin I'd be there whenever he spends the night in the hospital, and Rachel of course has Jacob, who at 8 months old should really not spend the night in the hospital. They took blood cultures tonight, and will wait to see if anyting grows, which would indicate an infection. This is a minor set back, and I got a whole day and a half back home, so I'm good--lol. Please pray this is not a major infection. Rachel or I will keep everybody posted on new developments.

Eric

Back in Michigan

Well I was anxious to get back to catch up on my bills (done) and get back momentum at work. Now I already miss Kevin terribly. I flew back Sunday afternoon, and Mike leaves today. I just got off the phone with Kevin and he's been very "sleepy" he said. That's not abnormal when his counts are at zero. No fevers to report yet though! Every day he's able to get through while his ANC is at zero, without picking up an infection is a minor victory. He probably had 5 to 7 more days at zero before his counts jump back up, then his immune system will help fight illness. I'll probably be back in Michigan until June 12th, so look for Rachel to post updates for the most part.

Eric

Kevin's ANC is zero

"If the white blood counts are too low, the child is neutropenic. Neutropenic means that the immune system is depressed, that the child is immunocompromised and unable to fight off infections. It is measured by the ANC, absolute neutrophil count:

• ANC = the percentage of neutrophils (segs and bands added together, these are the neutrophils that fight infection) multiplied by the total WBC

If the ANC is >1000, the patient can live a relatively normal life. If it is 500-1000, he is entering the danger zone. If it is <500,>AGC (absolute granulocyte count)."

Kevin got out of the hospital Friday (late afternoon). We have been back to the hospital everyday for blood draws, labs and to hook up his TPN because we are all still learning. I am nervous about having to do it all on my own. Mike and Eric seem pretty confident with it. I am scared to death of screwing up my kid.

We have just been hanging around the Target House apartment playing the Wii. Kevin has been really tired which is good, we can't go out into public when he has no immune system. While they all play the Wii, I have been working hard to keep this place VERY clean. Maybe a good after effect of all of this is I will keep a cleaner home. Though I am not sure how I would be able to if not for Mike to take care of the kids while I deep clean everything in sight.

The McCommon's were kind enough to give Kevin a gift card to Game Stop so we got a new Wii game today. The kids seem to love it (including Mike) and Kevin actually played a couple of games which is huge, he didn't move off the couch much today.

Thats about it right now.
Rachel

Day +2 GCSF

Today was another great day for Kevin. He once again was successful in eating without getting ill. I don't want to mislead and paint a picture of him eating like the rest of us, but for being an inpatient recently administered chemo, stem cell infusion, and other medicines to protect his body he's doing wonderful. The doctor and nurses all agree that this first cycle has gone very smoothly thus far. They even lowered his TPN to 20 hours a day since his body is processing it well and he's eating on top of it. Rachel had her TPN experience today and did very well. She's nervous about it, but after a couple more times with assistance I'm confident she'll have no problems at all. Kevin and I go back to the Target House tomorrow. It will be nice for both of us. Having seen his vast improvement the last several days I'm quite optimistic about his return. He'll not leave the apartment much when his counts are down, but he has plenty to do, including school, wii, and movies. We have an early morning so I'll sign off for now.

Eric

What in the world is TPN?

After reading Eric's entry about Day +1 (GCSF) you are probably wondering what is TPN.

TPN (Total Parenteral Nutrition) is kind of what the rest of the world would consider a feeding tube. Kevin is being supplemented through a tube that is connected to his hickman line they put in his chest last week. This is also how he received his chemo drugs with the exception of the vincristine which is a tiny pill this past week.

What exactly is TPN?
TPN bypasses the normal way the body digests food in the stomach. It supplies the fuels the body needs directly into the blood stream through a central IV line. The body needs 3 kinds of fuel — carbohydrates, protein, and fat.
• Carbohydrates provide calories to the body. They supply most of the energy or fuel the body needs to run. The main energy source in TPN is dextrose (sugar).
• Protein is made up of amino acids, which are the “building blocks” of life. The body uses protein to build muscle, repair tissue, fight infections, and carry nutrients through the body.
• Fat or Lipids are another source of calories and energy. Fat also helps carry vitamins in the blood stream. Fat supports and protects some of your organs and insulates your body against heat loss. Fat is white in color.
TPN also contains other nutrients, such as vitamins and minerals, electrolytes, and water.
• Vitamins added to the TPN provide the needed daily amounts of vitamins A, B, C, D, E, and K. It is the vitamins that are added to the TPN mixture that turns it yellow. The body also needs minerals. These minerals are zinc, copper, chromium, manganese, and selenium. The vitamins and minerals in the TPN are needed for the body’s growth and good health.
• Electrolytes are important for bone, nerve, organ, and muscle function. Electrolytes, such as calcium, potassium, phosphorus, magnesium, sodium, chloride, and acetate, are also added to the TPN mixture.
• Water is a vital part of TPN. It prevents patients from becoming dehydrated (too little fluid). The amount of water in the TPN is based on your child’s height and weight.
Staff members will use blood tests to check the balance of all the TPN parts. The most critical of these tests is the chemistry test that your child will have during each clinic visit. The TPN mixture may be changed based on your child’s needs and the blood test results.

Possible TPN–related problems
Some problems might occur when your child is on TPN. Sometimes the problem can be fixed by changing the levels of protein, carbohydrates, or electrolytes in the TPN mixture. The clinical pharmacist and the nutritionist will review all of your child’s blood tests daily and will correct any imbalances. Hyperglycemia, or too much blood sugar, is one of the problems that can occur while your child is receiving TPN. This imbalance does not happen often, but you should be aware of it.
Hyperglycemia (High blood sugar)
Hyperglycemia is a higher than normal level of sugar in the blood.
• It can happen when TPN is given too fast or if the body cannot accept the sugar. Sometimes having an infection or taking a medicine such as a steroid will make the body unable to use large amounts of sugar.
• Your child may have a headache or feel thirsty, weak, or sick to her stomach.
• The pharmacist and nutritionist will follow your child’s daily blood tests very closely. One of those tests checks the sugar level in the blood.


And yes, I am completely freaked out about doing this by myself with a screaming 8 month old in the back ground on a daily basis. I feel like I should have gone to nursing school. I don't remotely feel qualified for all of this.

Please pray that Kevin stays healthy through all of this.

Rachel

Day +1 (GCSF)

Kevin had a wonderful day today. No vomiting, a good physical therapy session, and even a little bit of an appetite. Today is considered day +1 because it's the first day after the stem cell infusion. He was given his GCSF today which boost his stem cells from the damage done by the chemo. His ANC is the most important number. Right now it's at 1,100 and will eventually go down to zero (probably within a week). The shots he gets the next couple of days help this number go back up. He'll be at absolute zero from what I understand, for a few days before his counts come back up. He'll be home at the Target House but will have to wear a mask when outside our apartment. If he even gets a temperature he'll need to go back to the hospital until his ANC count is at least 500. Not sure how I got off on my medical tangent, but my point of today is Kevin had a great day. He played Wii with Mike and Scotty. He even ate ravioli twice for Mike this evening. I think we're going to lay off dairy for a bit, because the breakfast cereal thing is clearly not working out. Tonight we watched Return of the Jedi. He loved the movie even though he's seen it before. I think tomorrow we'll watch Phantom Menace. He even had some popcorn and doritos. He was his old silly self, making fun of me and the nurse as she was teaching me how to administer his TPN. She actually made me do everything myself tonight, from injecting the vitamins in the bag, to priming it, connecting it, and setting up the pump. It was a bit overwhelming, but now that I did it once I think it would be easier next time. He was a little ham though. He's back to his giggling silly self, at least for tonight. We're all just praying he doesn't get an infection when he leaves the hospital.

Take care,
Eric

Can you Spare $1 in Honor of Kevin’s Battle with Cancer?

Please note: I know many of you have spared more than a dollar to help us manage all of the costs associated with Kevin's cancer treatment. Please know we really appreciate it and it is certainly helping us with these mounting costs of travel and living here in Memphis while we try to save Kevin.

Kevin’s school Glengary has this great program they call the Mileage Club. At recess on Fridays the kids can walk around the school and earn charms to go on a chain for each set of 20 laps they do. Kevin LOVES the Mileage Club and was really upset he was going to be missing it the rest of the school year. Kevin really enjoys going to Glenagry and I think the Mileage Club is really special because at Kevin’s old school he always seemed to be in trouble at recess a lot. I think the Mileage Club has helped Kevin develop friendships in a healthy way, with a bit of healthy competition where the kids encourage each other. Plus I think it helped minimize those few awkward days when his close friends weren’t around to play with.

I recently learned that the Glengary PTA is trying to raise funds to put a track in and they are a long ways from their goal. Friday May 30^th Glengary is hosting their first Fun Run and they are asking the kids to get pledges for their walk. Since Kevin cannot participate I am asking all of our friends, family, our prayer people, basically anyone who is willing to send a $1 in Kevin’s honor to his school. The Glengary PTA is a non profit and donations can be tax deductible.

Here is where to send a $1:

Glengary Elementary PTA
ATTN: Denise Bither
3070 Woodbury St
Commerce Twp, MI 48390

RE: In Honor of Kevin

If you write a check please put in the memo it is for the new track. But feel free just to stick a dollar in an envelope and mail it off.

You all have been so wonderful to us with all of your care and support. I know it would be a long shot, but it would be so great if they were able to build that track by next fall. Kevin’s equilibrium is currently a little out of whack from the chemo and I am going to use the Mileage Club as an incentive for him to work on overcoming this small side effect.

God Bless,

Rachel

Day 0.....Stem Cell Infusion

Kevin enjoyed his day of rest yesterday. Mike and Rachel said he didn't sleep much during the day, but was alert, talkative, and in good spirits. He's still not able to keep food down for more then an hour or two, but that's very typical. This too will eventually work it's self out. I was able to watch the first half of the Pistons game at the Target House, giving Mike and Kevin some additional quality time. I arrived around 9 p.m. and they were playing the Wii, so I went next door to the parent room and finished watching the Pistons game. Once Mike left Kevin really didn't stay up for much longer, but he really needed his sleep. Both of us were worn out to say the least, from 2 nights in a row of getting up every 2 hours for him to empty his bladder. I think I mentioned this before, but the medicine he was taking on those two days leaves his bladder vulnerable to hemmoraging. As long as it's not too full for a long period of time, and the output is as much or more then the input there's typically not problems. Kevin's labs have looked good, and still nothing has grown on the blood cultures taken 2 nights ago, meaning no infection. Kevin and I enjoyed a long night of uninterupted sleep last night. We "slept in" until 8:30 this morning and both of us woke up in much better moods. He had physical therapy around 10:15. This was much different then the p.t. he took before chemo. This was more to get him out of bed and was a little more fun and less to challenge him. The Therapist said his balance is definitely off right now, which is a combination of the chemo and the fact that he hasn't been able to fully digest any nutrition. At 11:15 a.m. he started the stem cell infusion. This was quite interesting to watch. It really didn't take very long--about 15 minutes or so. The preservative used to freeze the bone marrow had a pungent odor of cream corn. He experienced a little bit of nausea but it wasn't too bad. He took a nap shortly there-after and I left him around 11:30 with Rachel (she arrived in time to be there for him for the infusion as well). Having spoken to her an hour ago, it seems he napped for quite some time, but has felt pretty good overall. He starts TPN tonight, which is critical nutrition that he's lacking. I don't even want to say how much weight he's lost. They'll monitor how his body takes the TPN until Friday then discharge Kevin from the hospital until next cycle. I've already booked my flight for Sunday. It's been almost 3 weeks and I have to go home and take care of several things. My overall reaction to Kevin's first chemo cycle is this: The first day was even worse then expected. It's hard to prepare somebod for how sick, and how quickly somebody becomes very ill in respose to the chemo and medicine. Other then that, Kevin's handled things outstading! Don't get me wrong, he can't eat, but he still does knowing he needs to try. He was a trooper during the every 2 hour bladder emptying sessions for 2 nights in a row (more so then I, as I crashed for 5 hours yesterday afternoon), and his overall attitude has been a delight to see. He enjoys things, he's not depressed, and he understands why he's doing this. He knows the tumor is gone, and MRI's are clean, but that chemo and radiation give him the best chance for the cancer to never come back.

I'll see many of you soon!

Eric

Nutrition and Cancer Prevention

I thought this was important to share. Hopefully all of you are taking care of yourselves too and getting your kids to eat healthy. Below is from the St. Jude website.

Nutrition and Cancer Prevention
Diet plays an important role in preventing adult cancer. By decreasing the number of cancer-associated food products and increasing the amount of cancer-preventing foods you eat, you may reduce your risk of some types of adult tumors.
Most studies about diet and cancer prevention involve adults who are exposed to dietary factors over long periods of time. The real benefit for a child may be in developing habits that will reduce the risk of cancer later in life. Here are some great sites with information on nutrition and the prevention of cancer:
American Cancer Society: Guidelines for Eating Well & Being Active
United States Department of Agriculture 2005 Dietary Guidelines for Americans
National Cancer Institute
American Institute for Cancer Research

Rachel

day-1 Rest Day

We had an up and down night, but his temperature came down around 3:00 or 4:00 a.m. and it's continued to stay down without the aid of Tylenol. The Doctor this morning looked him over pretty good, and said it's not abnormal to have a slight fever without infection during chemo. He'll know more after blood culture anaylysis. He woke up feeling really good. He attempted to eat breakfast but that didn't work out so well. He's pretty tired, but overall feeling better then last night. It's about 11 a.m. and we're watching the Disney Channel. The doctor told us we're still on pace for him getting out on Friday, which means I'll probably take a weekend flight back home. Rachel should be coming in soon...Hopefully I'll be able to take a nap to supplement the 3 hours I had last night.

Eric

Day -2 completed with speedbump

Kevin had a good morning and from what I hear from Mike a good afternoon and evening as well. I came in around 8 p.m. tonight and Kevin did seem tired, which of course is no surprise. He started to toss and turn in his sleep and moan a little. The nurse came in for her normal rounds and discovered he has a 100 degree temp. She uncovered him a bit and came back an hour later, only to find it was a little over 101 degrees. She paged the doctor who came in within 10 minutes. She sent down orders for Vancomucin, which I'm told is a broad reaching antibiotic. The doctor also ordered blood cultures. All in all she didn't seem overly alarmed. The nurse did say it's probably an infection and more then likely it's in his line. This was an unoffical comment, but was information at least. She said if it's in the line it's not too big of a deal as the antibiotic goes directly to the source. He'll get the antibiotic every 8 hours until futher notice. They also gave him some tylenol to break the fever. It's not super high, but I guess I'm a little surprised as his ANC counts are still quite high, meaning his ummune system isn't wide open like it will be when they reach zero. I think that's why the nurse commented about it being in his line. It's being used all the time, and it's a common source of infection even when counts are up. He's seemed to stop stirring. Luckily tomorrow is considered a rest day on his protocol---day -1. which leads up to his stem cell infusion on day 0 on Tuesday. In a perfect situation he'd leave the hospital on Wednesday, but we already knew he was getting TPN, which is a supplemental nourishment line. They start that on day 0 and need to take 2 or 3 days to make sure his body and organs are metabolizing everything okay without unnecessary damage. Kevin and I have now been here almost 2 weeks, as we arrived on Tuesday the 12th. If everything goes well hopefully Kevin will be out of the hospital by Saturday. His attitude after day 1 has been good. He really does know what's going on, and has been incredibly brave. I've never been more proud of him.

Take care,

Eric

Poisonous Spiders in Tennessee

Anyone coming to Tennessee this summer to help please note this. Below is an exact copy from the Tennessee Poison Center :

Poisonous Spiders in Tennessee:

Few things cause as much fear and anxiety in people as the thought of poisonous spiders. Tennessee is home to many species of spiders; however, only two are poisonous - the black widow and the brown recluse. Both of these species are found in every Tennessee county.

Below are some useful tips for keeping spiders at bay:

· Store clothing in sealed plastic bags or storage boxes

· Store shoes in plastic shoe boxes

· Shake clothing and shoes before wearing

· Move beds away from walls or curtains

· Remove bed skirts from box springs

· Do not use bedspreads that touch or come close to the floor

· Inspect bedding before climbing into bed

· Consider keeping closet doors open to let in light

· Move firewood away from the home, elevate it off the ground and cover it with plastic

· Keep all vegetation and mulch at least 18 inches from the foundation of your home

· Trim branches and shrubs away from the home to prevent spiders from using them as a path into the home

· Seal all cracks and crevices where spiders may enter the home.

If you suspect that you have a spider bite, contact your primary care physician.

The above information is provided by The University of Tennessee Agricultural Extension Service. For more information about spiders and other subjects, visit the Agricultural Extension Service Website:

http://www.utextension.edu

Brown Recluse Spider

Description:

The brown recluse is a shy, retiring spider that does not attack people and usually only bites in response to being injured. This is quite the opposite of what most people think! Most reported bites occur when putting on clothing in which the spider is hiding or rolling on a spider in bed. Most people living in proximity to the spider will never see it, nor be bitten by it.

The brown recluse is a medium-sized spider. The legs span an area roughly the size of a quarter to a half-dollar. The color of the brown recluse ranges from a light yellowish brown to a dark reddish or chocolate brown, but most are light to medium brown. The second pair of legs is always longer than the remaining pair in both the male and female. Three pairs of eyes are arranged in a semicircle. Since most other spiders have eight eyes, this feature alone can eliminate many specimens suspected of being a brown recluse spider.

The most distinguishing characteristic is the violin-shaped marking on the top of the body directly above the legs. The violin-shaped marking is usually much darker than the surrounding areas and may appear lined. Since some other species of spider have a violin-shaped marking, the best identification feature for the brown recluse is a semicircular arrangement of the three pairs of eyes. Contact your county Extension agent to identify a suspected brown recluse spider.

Habitat:

Brown recluse spiders prefer sheltered areas with low moisture levels. In homes, they tend to prefer darkened storage areas in closets, garages, basements, attics and cupboards. Since most brown recluse spiders hibernate in the winter (except for those that live indoors), most bites occur between March and October when humans accidentally disturb their habitat: closets, out-buildings or woodpiles.

For additional information regarding the brown recluse spider, visit this link on The University of Tennessee Agricultural Extension Service website :

http://www.utextension.utk.edu/publications/pbfiles/pb1191.pdf

For a photo and description of the brown recluse spider, visit this link:

http://www.mc.vanderbilt.edu/root/pdfs/poison/Brown_recluse_spider.pdf


Black Widow Spider

Description:

Black widow spiders are very numerous in nearly all parts of the U.S., but cases of reported bites are not common. For the most part, black widows live peacefully in close proximity to humans with little contact. Both the northern and southern black widows are found in Tennessee, with the southern species being the most common. The black widow appears shiny and hairless to the naked eye. The body ranges from a deep glossy black to an occasional dark brown to a reddish brown. The underside of the abdomen has a distinct red or orange hourglass shape. In immature spiders, the color can vary and the hourglass may be white or missing.

The body of the female adult black widow spider can reach 1 ½ inches with the legs fully extended. Black widow spiders have eight eyes arranged in two rows of four. The males are generally considered harmless and are usually about half the size of females with yellow or red spots or bands on the back or sides.

Habitat:

The black widows prefer closed, dark places such as water meter compartments and crawl spaces, so barriers constructed to inhibit entrance to these areas are of value. Common places where black widow spiders may be found are firewood piles, under boards and furniture, inside boxes, behind and under debris, sheds, barns, well houses and root cellars.

For additional information regarding the black widow spider, visit this link on The University of Tennessee Agricultural Extension Service website :

http://www.utextension.utk.edu/publications/pbfiles/PB1193.pdf

For a photo and description of the black widow spider, visit this link:

http://www.mc.vanderbilt.edu/root/pdfs/poison/Black_widow_spider.pdf

Day -3 (second day) chemo continued

It's about 9:40 p.m. and Kevin is peacefully sleeping. Accross the board, with Mike, Rachel and my time with Kevin we've all seen a dramatic improvement from yesterday. He didn't have a single epsisode of vomiting today. As Rachel said he was playfull and even ate well. We hope and pray tomorrow is similar. Tomorrow is actually the exact same chemo regiment as today, so we'll cross our fingers it goes as well. Everybody told us the first day is miserable and they were right. I'm not going to assume the remaining days of this cycle will go as well, but I hope they lean closer towards today then yesterday---much closer. Yesterday is really a fog to Kevin. He had such bad nausea they had to medicate him pretty heavily to slow it down. The mouth care he's fighting though. In order to prevent sores and ulcers in his mouth and throat he needs to do a regiment of 2 different liquids...The first he swishes and spits, and it's pretty much like a salt and water combo, the second he needs to swish and swallow. Yesterday every time he tried to swallow it he became ill. Today he refuses to swallow the foul smelling and tasting yellowish liquid. I can't say I blame him.

Other then that our thoughts are with Heather as she fights an infection following her chemo, and Alina who begins her inpatient portion tomorrow.

I'm going to finish watching the Pistons lose.

Eric

Day -3, Second Day of Chemo...much better

Just a brief update Kevin is up and eating and even has his silly sense of humor back! Horray!!! I am waiting for the poop explosions I have heard happen today but he has to pee every two hours to make sure he doens't become toxic. The nurses are much better today, much more responsive to Kevin and helping us but that also might be because he isn't so sick....yet. I am afraid of jinking how good we have it at this moment. Eric just left from his night shift. He stayed to enjoy Kevins good mood. It is really a nice to have his spirits up.

Eric tells me that Kevin mentioned this morning," This isn't that bad, I don't feel stuck."

This is my update. Maybe Eric or Mike will give another one later.

Thank you everyone for the prayers, comments and letting us know you are supporting Kevin and us through this. It helps us make it through the tough moments.

Rachel

P.S. Here is a link to a TON of pictures a couple of movies taken this month.

Pictures of Life During Chemo

Here are some pictures of Kevin from yesterday. It turned out to be a very rough day for him. His body was working hard to get the toxins out as fast as they were going in. Mike unfortunately had to put him in pull ups last night because it was so bad. He ate pretty much nothing the whole day. He was very mad at me any time he was awake yesterday and I had a lot of trouble getting him to do mouth care. Hopefully he does better with Eric or Mike. I am worried about him alot.





Jake and Scotty hung out with Mike during the day yesterday and Mike got some really cute pictures of them playing. Scotty keeps asking where Kevin is and why can't he go see him. When Mike was at the hospital he was really confused about where, "daddy is sleeping". I think Scotty feels pretty lonely without Kevin around, Jake is a good distraction but it isn't the same because of the large age difference.





And this is what happens when Daddy is watching the kids.... ;-)

AM of Day -4 ; 1st chemo round

I finally get to use the computer!

We are almost 4 hours into Kevin's first round of chemo. He has 6 hours of the cisplatin through an IV and that started at 6am CT. He has had his first dosage of amifostine to which it has made him very sick and his blood pressure to suddenly drop dangerously low which is 'normal'. We did what they call flip him, put his head down and his legs up so that his blood went back to his heart. He will get another dosage of the amifostine at noon, so in just under 2 hours. I can't count how many times he has thrown up so far. I just feel horrible for him. As for me, doing this to him is heartbreaking. I think I have been really tough through most of this but I am just struggling with the fact that my seven year little boy has to be made so sick in order to save his life. It really isn't fair that he has to go through this. When Kevin pees we are suppose to wear gloves, especially me since I am still breastfeeding Jake, because what comes out of him is toxic. It is such a tragedy that we have to feed people who are struck with cancer these toxic drugs to kill the cancer. I am aware there are other methods out there and honestly the lack of statistics about the number of remissions and 5, 10 and 20 year survival rates scared me away from looking too deep into what is considered alternative cancer treatments but I am hopeful for the future. Being here in a place where they research this daily we get to hear about the hope that they are looking for better ways. Understanding and analyzing DNA more and more to understand how different people are affected by treatment. I heard recently that they are trying to make chemo drugs that won't get the kids so sick. That would be great. I really hope a 100 years from now, that the generations after us look back and have enough understanding to think we were really crazy for doing this to people. I hope soon for the sake of those who may be affected with this terrible disease that there is something better. But for now we are here and what Kevin is getting is better than it was 10 years ago so in that I will try to find my peace.

If you are praying for Kevin please pray that his internal organs are protects but especially his hearing, bladder, kidneys, mouth, nerves and brain are protected. That this treatment gets all of the cancer cells and doesn't cause a secondary cancer ever in him. Also that he doesn't get any fevers or infections over the next 5 months and that his ANC blood counts recover fast. Thank you so much for your prayers and support of Kevin and the rest of us as we navigate the storm of childhood cancer.

Today, from what we have heard from other parents, doctors and nurses this is suppose to be the worst day through this whole thing for him. Hopefully he is able to sleep through most of it.

Eric did night shift last night (he is still here in his PJ's) and I came in this morning and Mike will come later this afternoon and trade me Scotty and Jake to take my place then Eric will come back for the night shift again.

Kevin is the first patient to stay in room #10 on the second floor of the Chili Care Center. His room is a orangy bright yellow. I will take pictures later today and post them.

I have noticed Kevin's angry outburst were less once Scotty came. I think sometimes we as adults underestimate the importance of siblings to help a child get through this.

I hope it gets warm in Michigan for those who are there! I will try to send a little of this Memphis heat back home with Mike in a couple of weeks. It has been close to 90 degrees almost everyday this past week. I hear the summer spiders are just as bad as the heat around here. Does anyone know of any particular dangerous spiders around here we should we aware of. It was pointed out to me we are the same distance from the equator as Africa earlier this week.

Take Care!
Rachel

Inpatient

Kevin's 3 hours into his first night as an inpatient. Rachel, Kevin and I came here at 8 and were given the tour. One of the nurses is from Brighton, Michigan so Rachel and her had that in common. He's not real keen on being an inpatient again, but tomorrow's a new day. Chemo starts at 6:30 a.m. and coninues for hours. He may not even wake up when it begins. He's been sleeping since Rachel left around 9:45. I moved the couch close to him and will try to sleep here tonight. It's about a foot too short, but I don't want him freaking out if he wakes up in the middle of the night, when the nurses do vitals.


Nurses are coming in, so I'll close

Take Care,

Eric

Tomorrow's the day

Kevin and I are enjoying our last night together at the Target House before we go inpatient at St. Jude. We're about prepared as we're going to be. We've had consult after consult with trasnplant/chemo nurses, doctors, and nurse practicioners. We surprisingly have a fairly long day tomorrow, prior to admitance at 8 p.m. I think we may be at St. Jude's until 3 or so.

Today was a better day for Kevin as far as pain goes. He was very sore yesterday. He was still pretty bad at his noon appointment today, so the doctor actually ordered morphine and they administered that through his line. It really helped out, then we switched his pill form pain medicine for liquid, so he's taking it now. yesterday he refused to take the pill, and last time we crushed up a pill he became ill. All in all a better day. Kevin is incredibly brave, and not showing much nervousness in anticipation of him going inpatient tomorrow. He's just happy with his Hickman that he'll no longer experience the pain of the pokes.

I believe Mike comes in tomorrow, and we'll work in shifts at the hospital, with myself spending the nights.

Take Care,

Eric

Surgery completed

Kevin's surgery was completed almost 2 hours ago. We spoke to Dr. Shokat, and he indicated it went well overall. He did say because of the placement of his shunt, that they had to operate with exreme caution so as not to disrupt the shunt or leave it open to infection. He also said that Kevin's anatonomy was a little different which made he line placement a bit more challenging then anticipated. Overall though, the Hickman is in place and the surgery went off with no complications. I was a little nervous as Kevin became physically ill just before they put him under. This was not the ideal way to start surgery to say the least. They said it's actually fairly common, and they gave him medicine and waitted a few minutes longer before opening him up. When he woke up he was not happy. I can't blame him, as he's had to endure so much the last few months. He had a really dry cough immediately after, which they said was from the tube in his throat. The cough cleared up within 30 or 40 minutes with some water. He's very sore and went back to the Target House with Rachel, Scotty and Jake. I'm still at the hospital....I'm getting some work done, and am going to go to his 12:30 B clinic consult. The consults typically mean he patient doesn't need to be there. The nurse and surgeon said any appointments he's not present for will be understood. Kevin's very tired and I imagine is probably laying down near or with mom at the Target house. Seeing him come out of anastesia is not easy to say the least. He's always very upset, and just wants to go home. Today he was asking why, why, why repeatedly. I wish I had an answer for him.

Take care,

Eric

Surgery

Just want to leave a quick entry that Kevin's in surgery right now. The first portion is over, which was the bone marrow aspiration. The surgeon said that went smoothly. Dr. Shocket is performing the second half of the surgery, which consist of him taking out his internal port, then installing the double lumen for chemo. We spoke with both surgeons yesterday. The lumen procedure is a bit more complicated then they had hoped for, since they will be doing a complete new install instead of just changing up his current line. He didn't like the location of his prior port (nobody did) so instead of just doing some quick adjustments on he current line, they removing the entire line and doing a second insision on the right side of his chest to instal the Hickman. It's not too big of a deal, just a little more involved then we had hoped for. His brain tumor resection surgery by Dr. Sood at Childen's Hospital was a very successful surgery, and we're thankful. But the general surgeon who did his port.....well we're not thrilled, let's just say that.

We had the pleasure of waking up around 5:45 a.m. in order to be here by 6:30. As long as everything goes well it's a small inconvenience. Once his second procedure is done and he's out of the recovery room, either Rachel or I will update the blog.

Eric

Address updated

Please note I've updated Kevin's address. This is were he'll be staying through September (hopefully not beyond).

Eric

Getting ready for chemo

We've moved into the Target House, and all in all are pretty settled. It's pretty much a decent sized apartment with 2 bedrooms, a kitchen, a small family room, and of course a bathroom. We went shopping last night with our kroger card, and of course managed to more then double the $100 amount on the card. They don't supply basics like paper towels, soap, shampoo, dish detergent or laundry detergent, or other cleaning supplies....so future shopping trips won't be as expensive-hopefully. Prior to shopping Kevin and I saw a movie: Chronicles of Narnia Prince Caspian. We both enjoyed the movie very much. It's quite long, but was enterntaining throughout. The little mouse is hilarious. There was a significant amount of fighting, but the whole movie's based off a religous theme (although sublimimal), so I figure it balances out.

Kevin began his GCSF shots yesterday. Even though he has an active port, they have decided to administer the medicine through a shot in the shoulder. They believe this increases the chances of the stem cells rising. We went to the hospital 10 a.m. this morning for his second dose. It was odd being there on a weekend, but it got our day started early. Kevin has 3 more shots, Sunday through Tuesday. The hope is for Kevin to be able to have his stem cells harvested through a cathetar in the leg (I forget the technical term) instead of through the bone marrow in his hip. This is less painfull and the ideal part of his protocol. They have told us that this probably won't happen. For whatever reason, pretty much every medulloblastoma patient has not had a high enough stem cell count, even after the GCSF shots to take through a cathetar in the leg. His surgery for his hickman line is Tuesday. They will also either put a line in his leg or withdrawl bone marrow from his hip bone for stem cell infusions. They hope to take enough for all 4 phases. The stem cell infusion is critical for returning his immune system, so as to fight off infection during chemo. This allows Kevin to undergo high dose chemo for 4 months, as opposed to lower dose for 15 to 18 months. He will most definitely need supplemental nourishment because of his weight. He's at about 88% of his ideal weight, and they'd like him at 90% or above. The good news is he gained a half pound since he's been here. We've been eating very high fat/high calorie snacks in between 3 healthy meals a day. He's feeling very well, and has even responded with little side effects from the GCSF shots.

That's about it for today. I think we're going to do something outside today and enjoy the weather. He'll sit in front of the t.v. or Nintendo DS all day if I let him. Maybe we'll go to the zoo.

Take Care,

Eric

MRIs and BW's

I'll start off immediately with the good news. Kevin's MRI's for his spine and brain both came back clear of any tumors or visible cancerous cells. Every MRI is going to be tough for all of us, and it's going to be a part of our life for years to come, but it sure was good news.
*************The rest of this is not for the weak of stomach**************
On to a funny little story. I must add this is with Kevin's 100% approval. He's sitting next to me laughing as I type this in fact. At any rate, yesterday I was up in arms about his weight. I wanted to test out Kevin eating past his comfort zone, or his I'm full zone. This was done with full support of doctors and nurses. My experiment started off well. We went to McDonalds where I enjoyed 10 chicken McNuggets, and Kevin proceded to eat all 6 of his chicken nuggets as well as a chocalte shake.........I should have left well enough alone. Three hours later we went to Buffalo Wild Wings (BW's). Kevin was pretty full but was a trooper. I told him to order whatever he wanted on the menu. Kevin chose mini corn dogs. He started off well enough, but half way through he said in no uncertain terms "daddy if I eat any more I'm gonna throw up". .......I should have listened!!!!!!!!!!! Two or three bites later Kevin blew chunks all over the restaurant; and I mean all over!! This was not 7 year old little bit of nasuea, this was 300 lb man getting violently ill type vomiting. I was terrified, but also a little impressed. He started at the table and continued to form a pathway all the way to the bathroom.....oh yes, Kevin just reminded me he "threw up in the bathroom too, but made it to the toilet". I ran terrified after Kevin to the bathroom and proceded to clean him up....there was a lot to clean up...a lot! After about 10 minutes or so of soaking his clothes and a minature sponge bath, we exited he restroom. They had a crew of people working on his works. I was embarassed to say the least.....Kevin was proud. (he's giggling histerically right now). I walked up to the manager who was cleaning it up, and offered my sincere apologies and tried to slip him $20 for his troubles. He was very nice and said he has kids of his own, and didn't accept the money........so the moral of the story is when Kevin says he can't eat any more or he'll throw up, do not feed him more. My experiment is over, Kevin will not be forced to eat past the point of being full. The nutrutionalist and nurses applauded my efforts, but said with his stomach being shrunk so much, we need to keep feeding him snacks and high fat dense calorie shakes and treats. We'll offer healthy meal food, so he at least makes an effort to get some good nutrition. But milk shakes and pudding here we come. Kevin says "everybody was looking at him and was embarassed, but that he's proud of how much he did". Sorry for the gross out story, but Kevin and I are happy our day is over and in fun moods.

Take Care,

Eric

We're Here

We landed safely yesterday evening. Everything went smoothly, and we were settled into the Grizzly House by 6:30 p.m. We ordered pizza, watched some TV (Go Pistons!) and called it a night. By 9 Kevin was asking me to turn the lights off. We got a lot of much needed sleep in preparation for today.

They packed an incredible amount of appointments into our schedule the next few days. Today has been jam packed with appointments. They're taking several test to make certain his body is ready to begin chemotherapy. Tomorrow is MRI day, and spinal tap. Patient services actually was able to get us an appointment to get our orientation and move in to the Target House today, but our schedule was so full we couldn't fit it in. The plan is for us to move in around 3:00 on Friday. It will be nice to be situated, so we can officially unpack.

He had his labs today, and his weight did not go up as we had planned. We were both pretty disappointed. We still have a little more then a week left, so he promised to listen to me the rest of the time and eat past the point of being full. A tummy ache is small price to pay for having a more healthy body for chemo. On a good note, he was very brave during the blood work for labs. He had his ort accessed for the first time in a month, and handled it very well. He's actually been in a better mood then me today. I've been a bit unpatient and even a little grumpy. Hopefully after we get settled in our routine and into the Target House we'll ( I guess I mean I'll) be in a better mood. The weight really got to me too. We've been working so hard, but he can be real convincing. He keeps telling us he's stuffed. The next week there are no excuses....He will eat beyond being full every meal of the day, plus snacks. He's on board, and there doesn't seem to be any hesiation or opposition from him. His way just didn't work, and he seems to accept that.

Other then that things are good. Kevin's in a pretty good frame of mind, and his health and energy are good.

Take Care,

Eric

On our way

(Eric Saarela)

(The picture posted is one of my all time favorites of Kevin and Scotty, from probably 2 years ago)

Well, our 3 1/2 weeks are up. Rachel drops Kevin and I off at the airport tomorrow afternoon. All of us have know all along Kevin was going back. I think one of the surprises is the extent that Kevin was able to transition back to life after his 2 + months at St. Jude. He never even missed a single gym class at school. Starting last Friday we've begun to say our good byes. We went to his old Elementary School and visited his first grad teacher, Mrs. Smith, who is a cancer survivor herself. Other staff members were absolutely thrilled to see him as well. Mrs. O'brien one of the office secretaries and the gym teacher were particularly pleased to see him. I think he got more hugs then he quite knew what to do with. Seeing a very masculine male gym teacher well up with tears when he saw Kevin (he had no idea he was coming to visit) made me almost lose it myself. Kevin was a bit overwhelmed, but it's real raw emotion from people who've been in his life. Once in a while it's important he knows the extent he's touched those around him.

Today the good bye parade continues as his class is having an ice cream party for him this afternoon. He's been a little bit back to normal this past week, as he asked me what day it was...I told him Thursday, and he said "that's awesome, only one more day of school until the weekend!". This was actually nice to see, as it shows he's come back full circle, and now counts the days until he doesn't have to go to school....he's not so starved for it anymore.

This evening we meet with the Make a Wish Foundation. I'm not sure what's going to be involved, but hopefully they'll be able to accomodate Kevin's wishes. He wants all of us: Mike, Rachel, Scotty, Jakey, and me to be able to go on the trip together. It will be something to look forward to when the chemo is completed.

24 hours from now Kevin and i will be on a plane to memphis. I guess at the end of the day it will be nice to get things started, so the unknown will no longer be....and we can get the proverbial show on the road.

Eric

Our CRAZY Photo Shoot

Here are some picture that were taken this past week by Joe Duron. He had the patience of a saint dealing with two crazy boys and trying to figure out our complicated family. He was the first photographer I have worked with that was a real joy to work with. He allowed it to be fun for the kids. He managed to get a few good pictures despite some VERY hyper boys (two of them were not coperative at all) . I think Mike & I even got our first good couple picture EVER! There are some great ones of Scotty & some really sweet ones of Eric hugging Kevin.

http://gallery.mac.com/jlduron#100139&sel=100

Senator Clinton Introduces Companion Legislation on Childhood Cancer Survivorship

I was tipped off about this from another parent. To read about this proposed legislation, follow the link to read the article. Senator Clinton Introduces Companion Legislation on Childhood Cancer Survivorship

Please write your local senators (click the link to the left to send a quick email) in honor of Kevin's battle with cancer & ask them to support Senator Clinton in companion bill (S 2877) to HR 4450, The Pediatric, Adolescent and Young Adult Cancer Survivorship and Quality of Life Act to improve and expand the delivery of medical and psychosocial care to survivors of childhood cancer.

What really hit me hard was what the article said about suvivorship, "By 25 years after diagnosis, 13 percent did not survive, most commonly from recurrent ALL (Acute lymphoblastic leukemia) or from a second cancer, the report indicates. Compared with siblings, ALL survivors were 2.8-3.6 times more likely to experience a chronic medical condition and a severe chronic medical condition, respectively. The study also reports that the mortality rate was higher in subjects treated with radiotherapy than in those who had not: 23.3 percent vs. 13.4 percent.

Additionally, survivors' social and economic outcomes, including rates of marriage, college graduation and health insurance coverage were significantly lower than those of their siblings. The study highlights the importance of practicing clinicians recognizing that because the cancer survivor population is growing and aging, in many instances late complications of therapy will not become evident until many years - even decades after the child has completed therapy."

Side Note: ALL is the most common childhood cancer.

Thank you for supporting us!

Rachel