Waiting for Counts to Approve

Kevin still has no neutrophils in his blood today, so after a morning at the hospital, we're hanging out at "home." We've been watching a lot of TV (a constant assault of Spongebob) and playing multiplayer Nintendo DS. Rachel and Jake have been napping most of the afternoon. They seem to have their nights and days confused.

Kevin is doing great! He's active, he's eating, he's laughing. Yesterday he fed dinner to Jake. I didn't have the camera so I couldn't catch the event, but I do have another video to share from Jake. It's Jake saying "bye-bye" to the camera. He's been doing that a lot lately, usually to complete strangers.

Tomorrow will probably be another long day at the hospital. We are expecting that Kevin's platelet count will be low, requiring him to get an infusion of platelets. We'll see, but today's it's been a very relaxing day.

Mike

Cancer Rates in Oakland County

I thought this was interesting and worth sharing even though it is only adult cancers. There has been a steady increase in the top 5 cancers. This could be because baby boomers are getting older but still why aren't we doing anything to try to make these rates decrease?
Cancer Incidence Trends
Study: Kids' Cancer Rate Varies By Region
This article has different pediatric cancer rates, maybe because it is older?
Trends in Childhood Cancer Mortality

Symptoms & Facts of Childhood Cancer

Almost Saturday morning

We had two trips to the airport today. Around 11 am we said good bye to Kevin's Aunt Laura. It was a nice week and she was a big help. Both the boys seemed to enjoy having her around. Before dropping her off we met with Richard our B Clinic PA who informed us Kevin will be needing another blood transfusion tomorrow. His hemoglobin is at 8.2 which is lower than they like. Richard also said he expects that Kevin will need platelets on Sunday. So it looks like we will be spending most of the weekend in the Medicine Room at St. Jude's. Kevin's counts are on their way down. His ANC should be near zero Sunday or Monday. This is when he is at the most risk for infection because he has no immune system. So we need lots of prayers that he is able to avoid any infections this whole week and stay clear of inpatient status.

Jake has started to do some fun things like walk around the coffee table, say bye-bye and wave. The later only seems to happen with random strangers at the hospital. He is sporting a whole bunch of teeth now!! Jake is getting big so fast and I am sad there is no hope of keeping a baby book for his first year of life.

We went back up to the airport around 7 pm tonight and picked up Scotty and Mike. I was really glad to see both of them. I have missed them alot this week.

Scotty seemed to have really enjoyed VBS back home this week. He loved spending time with his friend Charlie today and Charlie's little sister. Scotty also has his first loose teeth. Two actually. If they come out in the next 9 days his first visit from the tooth fairy will be in Memphis.

Officially outpatientOne

Kevin left the hospital yesterday afternoon with Rachel and Laura, as I went home after my overnight shift to get our Target House room ready. I can think of more then a couple people who would have taken great pleasure given the opportunity to see me scrubbing the toilet, cleaning the bathtub, and deep cleaning pretty much any area I could see. I think if I would've had somebody there I would've complained, but since I didn't I kept my thoughts to myself--lol. Kevin came home and has been pretty strong since. It's about 9:45 a.m. right now. His energy is good, and he's walking quite well. We kind of got caught in the middle of a transition with his nausea meds, from 3 times daily to a 24 hour ready made. The 24 hour isn't ready yet, so he didn't have anything this morning. He was fine when he woke up, but of course he got real sick when getting his labs at St. Judes. We're sitting in the Medicine room right now for a scheduled GCF appointment, and they've also given him so Benedryl for nausea. He's feeling well now, watching cartoons and playing his Nin. DS. We'e learned that when Kevin says he's going to get sick, he means it, and to grab something quick! All in all he's doing very well. I'm flying home at 1:30 this afternoon, so I'll be leaving the hospital shortly after Rachel and my sister arrive. We're half way done, and looking forward to he next few weeks of rest for Kevin.

Take Care,

Eric

Right on Schedule

Kevin's had a pretty good day today. Rachel and Jake were with him from 9 am to 9 pm (majority of the day). I picked my sister up from the airport around 1 and took her to lunch for her birthday. Laura was here from 4 to 9 with Rachel though. He slept a lot but was pretty energetic in small spurts, wanting to play wii. His body has really calmed down over the last 24 hours. He started back up on TPN (his nourishment through his line) tonight, and tomorow morning does his Stem cell infusion. Since his body is already accustomed to TPN, they don't need him to stay in the hospital to monitor how he responds. He started off on a 20 hr cycle tonight, and will transistion to 12 hours a day over the next week or so. His attitude has been fantastic. Whether he wants to play his wii, watch t.v. or sleep, he lets us know. He's been very polite with the nurses, and hasn't had any signs at all of having another night terror...Thank God!!! If he does get out tomorrow, I'll probably move my flight up and return home so I can put some time in at the office. His counts will be at 0 in the next 10 days or so, and that's the time where everything's touch and go, in terms of whether they re-admit him. This is when Rachel or I takes his temp every few hours, and if it's above 100.3 he pretty much goes back to the hospital. All in all, things are going well. We look forward to the day that he gets to come back home. I can't wait to see him with even half the energy he use to have. Chemo is typically dreadful, but short term. Once all 4 of his cycles are completed things start coming back. His hair will probably be the longest, as that was hit hard both by chemo and radiation. To be honest, I could care less if he every grows hair again as long as he's healthy and happy. And, his lack of hair has never been an issue for him. He shows his bald head with pride. I hope all is well back home. I look forward to coming back to Michigan and getting a taste of home for a week or so.

Good night all

Eric

chemo done this cycle

I'm writting this at about 10 p.m. watching Kevin sleep peacefully, and hoping he can stay that way until his next scheduled "bathroom break" at midnight. Truth be told, his bathroom breaks are the furthes thing from scheduled at this point. This is the portion of chemo Kevin dislikes the most. Just like last cycle Kevin's vomiting episodes have slowed down (great right?), but now he's completely lost control of his bowels. I won't go into too much detail, but it's not fun for either one of us. Since 7:30 he's had to get everything on his bed changed 3 times. He's been incredibly strong though. He gets real upset when he realizes it happened, but once we get him cleaned up, I let him lie on my made up couch/bed until the nurses get his linnens changed. They also took him off Adavan today, which means he's down to 1 nausea medicine. He's perhaps a little more with it, but still very tired both physcially and emotionally. The chemo is over though for this round, and his bodies reactions to it should decrease every day. Tomorrow is considered his rest day, but I'm sure he'll still have some side effects to deal with. Then on Tuesday,day 0 is the stem cell infusion. Other then the odor, it doesn't usually elicit severe side effects. My shift started at 5 today as Rachel took Scotty and Mike to the airport. Tomorrow I pick my sister, Laura up at 1 p.m. He's pretty excited to see her. We're still hoping Kevin get's out of the Hospital on Wednesday, but his body obviously needs to calm down before then. I just noticed today that Kevin's received several cards. Thank you to everybody! His face lights up with every envelope he gets!

Take Care,

Eric

Pictures from when Grandma and Grandpa come to help

My parents got an easy week to come help. It is just luck of the draw and no one really knows how Kevin is going to react, if he is going to come down with an infection or what the future holds. Kevins last blood transfusion, before starting chemo, reviled that his blood has an antibody so it took them longer to get the blood typed right and prepared for this transfusion. Hopefully this is just a temporary thing but it turns out not to be I may ask for further testing to see what it is Kevin has caught.

Here are some pictures that my parents took from their week here.

Lots of Sleep

Today has seemed to go fairly well thus far. Understand of course, fairly well is a relative term when a child is receiving high dose chemotherapy. As many of you read, Kevin had a very tough bout with nausea last night. One or two medications alone couldn't control it, so they successfully slowed things down with 3--Benadryl, Adavan, and his normal Zofran. The side effect is a very sleepy and a little less clear-headed, Kevin. He's been a gem though. He has to get up a minimum of every 2 hours to urinate, and he's done it with little complaining. He's also been very tolerable with the nurses tonight (it's almost midnight as I write this), as they come in periodicaly to take his vitals. His blood pressure is pretty low when he sleeps,and the chemo is known to lower it further. So Kevin who enjoys sleeping in the fetal position, has to be turned onto his back to get a better reading. He whines for a second, then complies. We're hoping tomorrow he won't require the cocktail of nausea drugs he's currently taking. Sleep is good, but he misses out on a mouth treatment or two. The mouth treatment saves him from getting painfull sores in his mouth and throat. We've been good at getting him to do this while he's awake, but he's supposed to do it 4 times a day. I see un-used portions sitting in the room, so I assume he's behind. We'll make a concerted effort tomorrow to get all of his daily treatments completed. Nobody, including the doctors and nursed want him to wake up from a peacefull sleep unless absolutely necessary. On another note, I want to bring up a 5k run that's coming up August 2nd back home in Rochester Hills, MI. There's a family in Rochester Hills (where I grew up) who lost their 6 1/2 year old daughter last year to a brain tumor. She had intrinsic brainstem glioma which is a whole different beast. Brain tumors in general are terrible, but the type she had is unfortunatley almost always fatal within 18 months. Anyway, the family formed a group called the Advokate, and are facilitating the 2nd anual Advokate, 5k in Rochester Municipal Park this August 2nd. The proceeds go directly to St. Jude Brain Tumor Research. She also was a patient here. It looks promising that Kevin will be completed with his 3rd cycle a few days before, so I hope to run. I spent 2 hours last night reading the family's entire blog about their experience. It was informative but also absolutely heart-wrenching. I have several friends who run races anyway, so if you're available it's for a great cause. I found this by complete accident, as my therapy of late has been running. I've been loggin between 25 and 30 miles a week this month, and every mile has been the best therapy I could ask for. I guess it's an added bonus that I've managed to drop the 10 or 12 lbs I gained from all the food and deserts from the Ronald McDonald House (March and April). Putting my i-pod on and losing myself for an hour into a run has been a highly anticipated part of my day. At any rate, enough said.........except Paul, Jay, Brad, and Vicki I hope to see you there--lol. Having read much about the awful prognosis of some of the different brain tumors has in an odd way made me thankful. That sounds like a ridiculous thing to say, as a parent of a child with a brain tumor..........But I'm thankful that Kevin at least has a chance, and a very, very good chance in that. When we first got run over by the proverbial freight train with the MRI news, we had no idea what we were in for. I can honestly say, that since that day my hopes for Kevin have become more and more positive with each increasing day. Lastly, for those who are saying prayers, I ask you include Heather and her mother Terri. She has the same exact brain tumor Kevin has, but they've been riddled with complications during her treatment. Her mother (like Rachel) is a true Super-Mom and has been by her side virtually every second, not getting to go home like I do. I hope all is well with everybody back home.

Take Care,

Eric

Just for Daddy

As I wrote, Kevin seemed to have a decent day today especially considering how rough his first day was last cycle. Well, he was just saving it all for me apparantly. Rachel's husband, Mike left around 8 or 8:15, and by 8:30 Kevin was having a pretty rough time (vomitting). We went through quite a few containers and well, he was just plain miserable. They had to medicate him pretty strongly to get it under control. He seems to act pretty loopy on just one dose of benedryl, but add another dose plus adavan (or anavan not sure) and he was pretty out of it. He's been sleeping peacefully now for about an hour, so hopefully the worst is over. Last cycle his body immediately rejected the medicine, but this time he took several hours to really get sick. He had to get his bed changed twice in 30 minutes. I dragged the recliner over to the side of he bed, because he was too weak to stand up while waiting for the linnen change. I look forward to seeing him wake up tomorrow morning, hopefully more lucid and feeling better overall. I find myself breaking rules a little more this cycle, as I climbed into bed with him again for a few minutes just to help him fall asleep. I'm glad he wasn't sick all day, and if his body wanted to save it for dad, then that's fine with me. Overall he's doing mch better then his first cycle's first day (Day -4). I think Rachel outlined this before, but his schedule once again (and this is off of memory so I'm sure there will some incorrect spelling) is as follows:
Day -4 (today)Cisplanten (chemo) and Amophostamine (drug to protect him from chemo side effects)
Day -3 (Saturday) Cyclophosphomate (chemo) and I believe an oral dose of Viscrantin
Day -2 (Sunday) same as Day -3
Day -1(Monday) Day of rest
Day 0 (Tuesday)Stemcell infusion. This is why it's wacky, because the doctors like to count the days from the beginning of the bone marrow transplant, not the introduction of chemo

Best day scenario Kevin could leave the hospital the evening of Day 0, since he's already acclimated to TPN. I don't want to get ahead of ourselves though, as his stay could vary widely.

Hopefully tomorrow is a decent day.

Take Care

Eric

First day (-4)

Last night started out great. The sleep study allowed Kevin to fall asleep peacefully, and he actually got over 2 hours of uninterupted sleep. Unfortunately when the nurse came in later that night (3 a.m rather), Kevin responded in a way I've not seen in many years. He was hysterical and wouldn't make eye contact. He was screaming and crying uncontrollably. He didn't respond at all to my voice or the nurses instruction. He also wasn't making sense, as all she needed to do was take his temperare orally then go right back to sleep. It was really concerning, because usually when he gets upset he's still himself, and will respond to me or the nurse. The nurse left the room to see if I could calm him down. I climbed in bed with him (normally a no-no) and tried to sooth him. Eventually he seemed to fall back to sleep, then awoke and was okay (about a 5 minute process). She came in took his temp, and he was fine. I went outside and talked with the nurse, and we both concluded that he had a "night terror". This morning I brought it up, and he had absolutely no recollection, which sealed it. It was deja vu for me. Both Rachel and I went through this many years ago with Kevin when he was a toddler. It was one of the scarriest things I had been through because he wouldn't or couldn't respond to us. Of course this whole Brain tumor "thing" has surpassed that by a country mile. I'm not an expert on the subject, but I'm sure there's a correlation between his night terrors and pent up stress and/or fear he's experiencing with this whole ordeal. Just as when he had night terrors many years ago, there was probably a link to Rachel and I having gone through our divorce. He's very close to both of us, so it's tough to not have any ability to console him when he's in that state. Thankfully he doesn't have any recollection of it, so that's at least some consolation. I hope and pray that this doesn't become a pattern. He did have a few last time around several years ago, but they never returned again until now. I guess if they continue we'll talk to one of St. Jude's fine Psychologist on staff, to try and work something out.....but I don't want to necessarily get ahead of myself.........Okay, now the good news. Having spoken to Rachel a few times today, Kevin seems to be handling his cisplanten and Amophostamine (sic) doses very well compared to the first cycle. They let him sleep in today (partly because of what happened last night), so he got a late start on chemo. His Hemoglobin was a little short of the requirment to begin the cycle (not abnormal) so they also had to do a blood transfusion this morning first before chemo. Once his HMG level was at the proper level (I think 10) they started chemo around 1:30. I left around noon, and Rachels reports were very positive. He's napping quite a bit, but hasn't had the violent vomiting that he suffered last cycle. Let's hope this continues. A little nausea is no problem, but seeing him suffer through uncontrollable bouts last cycle was really rough. Tomorrow he starts theCyclophosamate, which means once again he'll need to urinate every 2 hours to protect his bladder from hemmoraging. We'll cross that bridge when it arrives. I better get ready to go to the hospital for my nigh shift.

Take Care,

Eric

First night

Well we've been admitted inpatient for round 2 of chemo. The research nurses came in and set up everything for the sleep study. I'm sitting here in a completely dark room with the sounds of crickets chirping....If it was little later (It's only 10) I'd probably fall right asleep. When the Sleep Study Nurses left it began 90 minutes of uninterupted sleep, which includes myself staying quiet and not going in and out of the room. When they left I gave him a kiss good night, and he rolled over and basically fell asleep immediately. The theory is that with the uninterupted periods of sleep they'll feel better and respond better for chemo. I will say I'm not nearly as nervous for the second cycle. Kevin and i chatted about it today, and he's a total guy. It's so funny. He basically said been there, done that, I'll be fine. His confidence naturally makes me that much more at ease for tomorrow morning. The first day of chemo, which is day -4, is by far the worst. We all know what to expect now, and hopefully any unwelcomed surprises will be few and far between. Well the crickets background is doing a number on me. I may fall asleep before 10:30. That would be a miracle! We'll keep the updates coming as his second round begins tomorow morning.

Everybody Take Care,

Eric

1 more day until chemo starts

Kevin goes inpatient tomorrow night and starts chemo on Friday. Last time he was really sick from the chemo. Please pray that he escapes any short term or long term side effects from the toxic drugs they are giving him to kill the cancer cells. Please pray that he is able to stay strong and focused on fighting this terrible disease. I really hope his spirits stay up, that will help with his healing. Please pray for me, Mike, Eric and my parents so that we might be able to understand Kevin and be an advocate for him that he needs us to be.

We really appreciate all of the prayers and comments!

Tonight before bed Scotty was talking about what he was going to be like when he grows up. He is scared the same thing is going to happen to him that is happening to Kevin right now. But he is wants to be so reassuring when he talks about it. He says, " But mommy it won't make me dead, I will just be really sick and have to take lots of medicines." Lets hope and pray he is wrong. He also said when he is big he is moving to Florida so the mean kid can't find him in Michigan and Tennessee (there was a kid about a month ago here at the Target House who kept yelling at Scotty that he didn't like him). He said he is going to have a son named David and I will be David's favorite grandmother. He said he is going to build me a big bedroom where David will crawl into bed with me late at night (and that I can live with him and his wife). Today he wasn't sure who he will marry when he is big, but he probably will be older than her. He told me that he is going to have a big house with lots of kids. It was pretty deep for a 5 year old to have so much of his life planned out. Scotty is really worried about dying right now. I am not sure if this is still left over from what happened last week. He understands Kevin is really sick right now. I know he is really worried about Kevin and doesn't want to leave his side, not even at night. I am glad he loves his brother so much. I pray that me and Mike can help Scotty work this through.

Rachel

Opps! We threw the mask to the wind for a day

Scotty had his first horse riding lesson today out at Habitat for Hope. He loved it and I want to thank them again for providing the wonderful lesson for him. Kevin was well enough to participate but isn't too into horses so by passed it to watch Enchanted inside with another little boy during the lesson. Scotty learned how to do basic grooming of the horse first. Then they worked on saddling up the horse, stretching and than riding the horse. Scotty LOVED the riding part and kept asking to go faster. Mrs. Horox was a wonderful teacher and I really appreciate her making Scotty feel special and important.

Riding lessons were really early in the morning to bet the heat so we were rushing to get there on time and forgot Kevin's mask. Then we went to the apartment and met up with my parents. Kevin didn't have to be at the hospital until noon. And sure enough after we registered at the hospital Kevin points out he doesn't have his mask on! I stopped dead in my tracks and said, "Well we can go to B clinic and get another one but think it will be okay just this once because your counts are high enough and we really aren't going to be here long. Just wash your hands lots!" I kid you not, Kevin skipped down the hall when he realized he had gotten out of wearing his mask. I think he had the best day in a long time today. It is the most energy I have seen him have in a long time. We went down town for dinner and then he got to go to Jillians and play $10 worth of games. It was nice to see him smile. It amazes me how much Scotty and Kevin are bonded. The last couple of days when it comes time to eat, they always defer to the other as to what they will eat. Oh they disagree, don't get me wrong, but they are getting really good working it out between themselves civilly most of the time. At the end of the night, Kevin and Scotty walked away with whoppy cushions. Scotty could not stop laughing about the 'farty' sound.

Oh! And I was happily unaware that my wonderful husband taught Scotty and Kevin last week how to use a straw under the arm pit to make the best 'farty' sounds, that is until yesterday when Scotty wanted to share his new talent with everyone here at the Target House. I was surprised to when I asked him who taught him this to find out my delightful husband is to blame. I can see it now, Scotty at the Glengary Talent Show next year with his magical straw.........!

As for me, I am still an emotional mess. I went and talked to the chaplin at the hospital. He was surprised to find out that I haven't had more 'breakdowns'. So I guess I was a bit overdue. I spent most of today crying or trying not to cry. It was nice to have him agree that this sucks and even him, a man of God, has trouble seeing the point to all of this suffering. I really appreciate all of you who reached out to me during this low point I am going through.

Okay, I should get some sleep. And even though I don't exactly feel right (yet) with the big guy upstairs I pray He blesses you and your loved ones with health.

Good night.
Rachel

Another Fever

Sure enough as soon as Mike and Eric were either back in Michigan or on their way, Kevin came down with another fever. This time 100.7 so at 10:00 pm we were back at the hospital. My parents (thank Heaven) are here to help this week. Dad (Sam) stayed with Scotty and put him to bed and Mom (Jan) came with me, Kevin and Jake to the hospital. They didn't admit us this time (horray!). Kevin's ANC was at 6,000 so they gave him an antibiotic via IV and around 1:30 am sent us back to the apartment.

It is really scary for me to think I might have to do this all by myself eventually. I would be fine on my own with Kevin but baby Jake throws the whole thing over the edge. I wouldn't give him up, he brings alot of joy to Kevin (and me) and he helped Kevin get to the hospital last night when he really didn't want to go. But it leaves me begging even my husband for help which is a very diificult thing to do. Especially when I am reminded sometimes that I am asking for to much and how inconvenient this whole thing is. Who are we kidding? Kevin and I remind eachother during the difficult parts this whole thing stinks worse than a room full of skunks, hopefully we will have this all behind us next year.

Today, we just realized Mike only has 5 vacation days left after the mandatory shut down around the 4th of July. That isn't going to make it to the end of September. It is nice that Eric's work is so flexible with him and I know he will be here for each round of Kevin's chemo but Eric can't take care of Jake during the day when I have to be at the hospital with Kevin because he usually spends the nights at the hospital and then sleeps during the day during chemo. So far we have spent most of the time between rounds of chemo at the hospital either inpatient or 'might as well be inpatient' because we get there early in the morning and don't leave until late at night. I have some family members coming to help (which I am really grateful for) until the middle of July but my step sister Nicole is getting married the end of July so I am searching for anyone who would be willing to come help me the end of July and early August. It can be long hard days but we do have a spacious, nice apartment in a nice area (this is pretty much the only good thing I have to offer). Mike is coming every weekend but has to be back in Michigan every Sunday night. I thought about getting a mother's helper but being at the hospital at 1 am drove home the point I need someone more than 8 am - 5 pm. We could end up in the hospital at any point in time. Today just drove home that it looks like help is eventually going to run out, even my husbands help, and that has made me for the first time ever a little mad at God. Why did this have to happen to Kevin or for that matter any one of my children? Why now when we just had a baby? I would never turn my back on any of my children nor give up, but it doesn't make any of this less scary or less hard. I feel bad about being angry about this, and being here also gives the opportunity to see everyday miracles, but today I am having a difficult time getting over anyone of us being put in the horrible situation childhood cancer puts a child and their family in. I am hope my woe is me (/my kid) attitude will be better tomorrow. Just today was emotionally rough for me even though it turned out to be an easy day.


Kevin didn't show any signs of fever today. His ANC was at 4,000 as of noon. So it dropped a little. Kevin is starting to lose his eye lashes and is not the energetic kids he was during radiation. He spends most of the day laying on the couch when we aren't walking from one end of the hospital to the other. His eyes are sullen and I can see the toll cancer treatment has taken on his little body. He forces himself to eat whatever Scotty is eating. This morning he threw up his peanut butter and marshmallow sandwich I made for each of the boys. I appreciate him trying.

Cancer sucks.

Rachel

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