Monday, June 30, 2008
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.
Saturday, June 28, 2008
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
Friday, June 27, 2008
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.
Wednesday, June 25, 2008
Monday, June 23, 2008
Good night all
Sunday, June 22, 2008
Here are some pictures that my parents took from their week here.
Saturday, June 21, 2008
Friday, June 20, 2008
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.
Thursday, June 19, 2008
Everybody Take Care,
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.
Tuesday, June 17, 2008
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.
Monday, June 16, 2008
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.
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.
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."
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
Sunday, June 15, 2008
Saturday, June 14, 2008
Friday, June 13, 2008
Good Night all
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
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
"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
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
Wednesday, June 11, 2008
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:
Tuesday, June 10, 2008
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.
Monday, June 9, 2008
Saturday, June 7, 2008
Today's a good day
Friday, June 6, 2008
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,
Thursday, June 5, 2008
Wednesday, June 4, 2008
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.
Tuesday, June 3, 2008
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.
Monday, June 2, 2008
Sunday, June 1, 2008
"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
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.