Eating out today? Choose Chili's please!

If you were planning to eat out today, please choose Chili's. Here is why it is a big deal:

September 29th is here. It is the day to eat at any Chili's Restaurant where 100% of the proceeds are directly donated to St Jude Children's Research Hospital in Memphis, Tennessee. Click here to find a Chili's location near you. http://www.chilis.com/locations/default.asp

Kevin is doing better each day because of the wonderful work they do at St. Jude. We would not be where we are today without them. Kevin received his radiation, inpatient chemo treatments & bone marrow transplants in the Chili's Care Center. The inpatients rooms have Wii's which encourage the kids to get up and move around even when they don't feel like it. Each patient's room has an attached parent room, and since no one is allowed to use the patients bathroom - except the patient -, having their own bathroom is important cuz when you have a very sick child you really can't leave their side. When we were in Detroit we had to share one small dingy bathroom with all the parents on the 5th floor, and there were times we had to go to another floor just to use the restroom! St Jude understands (and requires) that parents stay with the patient at all times. They work hard to make accommodations.

I have to mention that our insurance originally refused to pay for Kevin's treatment. St. Jude never stopped Kevin's treatment because of our insurance refusal to pay, and if a family doesn't have insurance, they don't have to worry, St. Jude takes care of it for them. How wonderful is that?!? St. Jude held my hand through the appeal process with our insurance who eventually agreed to pay most of it.

They have an amazingly organized and efficient system, with dedicated schedulers who handle coordination of each patient schedule. Each afternoon when we are outpatient we are given a print out of Kevin's schedule for the next day. Almost everything is taken care of on campus. No driving from one end of town to the other. We get to concentrate on getting Kevin better, not chasing down doctors, making appointments and trying to be a scheduler myself. It is amazing, especially after our experience back home.

So please eat, drink, and be at Chili's tomorrow anytime. Dine in or carry out....it all goes to St Jude.

Thank you to the 50 million dollar commitment Chili's has made to St Jude's. Thank you to all the Chili's patron's who help make life a little better for the families battling childhood cancer.

Also, if you have one, bring any old cell phones too. St Jude will get $1.50 for each one regardless of its condition.

Rachel

Jake Walking

He still isn't sure about this whole walking thing, but we got him on video taking his first steps. I of course had just gotten out of bed (Mike let me sleep in because Jake has been waking up in the middle of the night alot lately) so excuse how horrible I look.

Coming along

Well I arrived in time on Friday to take Kevin to his 2:30 labs. Next at 3:30 we went to E Clinic to go over the results of his blood test. Dr. Gajjar wasn't there, but his Nurse Coordinator was there to cover everything. It was pretty much positive news. His ANC has gone up from 700 to 1500. This is without he benefit of GCSF that he was formerly taking to artifically stimulate his counts. This means the Bone Marrow Transplant has started to hold. They don't want Kevin to have any more transfusions unless absolutely necessary. This Sunday may or may not be necessary. He has a Lumbar Puncture on Monday morning, but his platelet count needs to be above 20 or they won't do it. Right now they're at 22, but was at 23 or 24 prior. Platelets have little to do with his body's immune system, but if they're low he could have he propensity to bleed or bruise much easier. She said often times the platelets are the last to recover. She also said most of Dr. Gajjar's patients go back to school soon upon returning home. He does seem stronger now, and we probably will have the option to go half days if his strenth doesn't allow for a full day. We'll take off a week at the very least, so he can get some much needed rest in. As Rachel mentioned he did quickly lose a pound when he was taken off T.P.N. He'll need to be monitored closely since he's so thin right now. However, his appetite has picked up some. Today for example, he had a bowl of cereal in the morning, a piece of cheese pizza in the afternoon, some yogurt later with rachel, then tonight had a bowl of pasta with me. He still gets nauseated in the morning, but after given his Ondansetron he recovers well within 30 to 45 minutes. Of course when school starts we hope he won't be so dependent on the medicine. But Dr. Gajjar's Nurse Coordinator said some kids remain on Ondansetron for up to 6 months after going home. If that's the case we'll have to give it to him the second he wakes up, so he feels well by the time he's at school. I don't think Rachel or I plan on sending him to school while he's feeling terribly nauseated. If he's late, he's late. He's improved dramaticaly since I left over a week ago. Hopefully in another 10 days his improvment is a the same degree. If that's the case I think he'll be ok. He's eating a chocolate chip cookie now, as I write this so that's 3 meals (very small portions, granted) and 2 snacks today. We need to get him up towards 1,500 calories somehow, as that's the amount he received from TPN. Finally, as Mike eloquently wrote thank yo to all involved in the fund raiser. It was nice to see friends, family and people from the community there. Kevin was excited to hear Mrs. Stout (last year's teacher) and this year's teacher Mrs. Bonkowski were there. Tomorrow we find out if he needs a platelet transfusion. Hopefully not, as it will mean we'll be stuck in he medicine room for a few hours. Not the best way to send my birthday, but at least it will be with Kevin.

Good Night,

Eric

This past week in Memphis

My youngest sister Sarah was here to help. Kevin really loved having her here and insisted on sharing her room while she was here. It was really very cute. You could tell he has really missed her. Scotty was very upset about missing a week with Aunt Sarah and upon his return reminded me again that he missed out because he had to go back to Michigan, which he is not at all happy about. "Mommy, I only had one day with Aunt Sarah, Kevin got more!" is what I heard this evening when putting him to bed. Maybe Aunt Sarah can make it up to him...(hint, hint little sis! Aren't you glad you are so loved?)

I am now on my own during the week as I think we have exasperated everyone with at least one trip, if not more, to Memphis to help me with Kevin and Jake. They have taken Kevin off of TPN (basically nutrition through a tube) which makes my evenings a little more manageable since it is just me now with the exception on the weekends, but Kevin lost one whole pound within the first 24 hours we stopped the TPN. So if that downward trend continues we may end up back on TPN. We are trying to get him to take his meds orally now instead of through his line.

I haven't been even remotely capable of keeping track of how much our travel and living in Memphis costs have been the last 9 months, but after discussing it with Mike tonight I am sure that figure is well over $30,000. The fund does not cover any loss of income Mike, myself nor Eric have endured because of this terrible cancer and with things getting tighter - it feels like each day - we really appreciate having the fund that has kept our family together over the last 9 almost 10 months. It has kept me somewhat sane as I have not had to deal with Kevin's chemo treatments and infections - with a newborn baby in tow - all on my own, far away from help of friends and family, and without this fund I would have. I know having the family around Kevin has helped him deal with all of the horrors of treatment in the security of knowing his family was around him, going through it with him, that he had a team of family who loves and cares for him. I am sure if you ask almost any St. Jude mom they feel like they are living on the edge. I don't think I will ever view life the same again. I feel like God has removed his sheltering arms and let me see the dark side of life, but please don't think that I also don't see the blessings. When nature sent us to a very dark side of life, we also got a glimspe of the good side of humanity. I am amazed and humbled by all of those who reached out to lift us all up. So THANK YOU, THANK YOU, THANK YOU!

Rachel

Comedy Fundraiser a HUGE Success

The Comedians for a Cause fundraiser at Joey's Comedy Club was a huge success last night. We had 168 people in attendance for Kevin and raised over $8000. A lot of that money came from many more people who gave contributions but could not attend. Seems like everyone who was there truly enjoyed the comedians, in particular the headliner Brad Upton.

Thanks once again to Julie Zube for pulling the whole thing together: coordinating with Joey's, accepting checks, setting up before hand. Thanks to all the people who brought the raffle items and helped set up and run the raffle, in particular Lynn Burrows, Carole Costa, Laura Dutcheshen, Art Saarela, Jan Skousen, Sarah Skousen (and her many friends ... sorry I didn't get the names). And thanks to John Bommarito for reading off the many raffle item winners at the end.

For those not in attendance, these fundraisers are the only way we can keep our family together while Kevin undergoes treatment at St. Jude. So far this year between airline tickets, rental cars, accommodations in Memphis, and parking at the airport, we have spent over $27,000. That doesn't include any of the money spent toward his healthcare. And that total continues to rise as Scotty and I are going to fly down to Memphis again in a few hours.

Mike

Kevin's Shunt

First off We didn't learn much from Tuesday appointment other than Kevin needs to eat!!! Kevin's Dr. wouldn't give me a definite date on releasing him as he is trying to work out some issues with Kevin's medicine. But one of the PA's told me more than likely it will be sometime in 2 weeks as long as Kevin's bone marrow starts kicking in building his immune system up. When I started asking questions the doctor started backing out of the room, I knew he didn't have the answers yet. So we are in a wait and see holding pattern. I do want Kevin's line pulled before we go home. It is just one more place for him to get an infection and I certainly will not allow him to go to school if it is still in when we return. The double luman has been a source of half of his infections through this whole thing.

When Kevin had the tumor in his head, it had been there so long and had grown large enough that it caused damage to his brain to the point where the fluid we all produce in our brains couldn't drain properly in his. So after his emergency surgery to relieve the pressure that had gotten dangerously high then 24 hours later he had his tumor removed in another surgery, a week later last February Kevin had to go through another brain surgery to have a shunt placed permanently in his head. The shunt is the bump on top of his head that everyone can see since he has no hair. From the shunt down to his stomach is tubing that runs under his skin which the fluid drains into his stomach. The shunt surgery was worse than the other brain surgery to remove the tumor. Kevin had more issues getting adjusted to the shunt, but now he seems pretty adjusted except for one big thing. He can't ride on rollar coasters or any amusement park ride for the most part as long as he has the shunt. It can kill him. About 2 years ago we took Kevin and Scotty to Cedar Point for the first time. Kevin was just big enough for the Raptor Ride. He loved it, he road it several times that day. Kevin surprisingly has a dare devil streak in him.

Yesterday as we were waiting to meet with Kevin's doctor, Kevin started talking about not being able to go on rollarcoasters. He was pretty upset about it. He was a little mad at me for not getting him an MRI sooner when he first started showing signs so that the tumor wouldn't have permanently damaged his brain and he wouldn't have to have a shunt. He also wanted me to promise no one else in the family would go on rollarcoasters since he couldn't. He was upset that whenever he goes to the boardwalk or any amusement park that all he can do now is win prizes.

I also caught him staring at himself in the mirror. I am pretty sure Kevin hates his shunt, he is just such a good kid he tries not to show it.

But this brings up another conflict. Kevin qualifies for Make a Wish since he has fought a life threatening illness. Kevin keeps picking amusement parks for his trip. It really hit me hard that going to one of those places for his wish might not be the best thing for him emotionally until he has peace within himself about his new limitations. One of the places on his list was Disney World, which I remember there being alot of rides as the highlights. The other plan was to go to California and go to Lego Land, Disney Land and San Diego Wild Park. Even though he has his wish submitted he still is uncertain about his final choice but he only had until November to change it.

So I need idea's from all of you. Kevin loves fish (him and Eric have aquariums at Eric's house), he wants to be a paleontologist when he grows up and loves being around other people. We have taken Kevin to the Smithsonian since he could walk and he seems to enjoy anyplace with a story. So please send us any vacation, destination ideas that stay away from amusement park ride type stuff. We need any and all ideas you might have. You can email (michigan_herrs at yahoo.com) them to me or post them in the comment space.

Sarah, a little 3 year old St. Jude patient is in need of lots of prayers. She has so many tumors growing inside her little head they just did an operation to put a shunt in which she seems to be struggling to adjust to. Sarah has been given until Christmas to live. Please say a prayer for her parents. They are doing a great job dealing with this nightmare of a situation they have been dealt but they are losing their daughter before their very eyes. No child should ever have to go through what these children go through. Sarah also has two older brothers who are having to go through a very grown up life situation (they are near Kevin and Scotty's age). If you can, please leave Sarah's family a short message of support. As a mom with a son with cancer I watch their situation and know that this can happen to any one of us. This just makes me sick that these kids and parents go through this.

Thank you for all of the love and support. You all have really blessed our lives.

Rachel

Comedians for a Cause

Hi All,

The fundraiser is fast approaching. The love and generosity everyone has poured out to Kevin's family is truly amazing. Starting at 7:30(so try to get there a little early to check out the stuff), we will have an auction with tickets before the comedy show begins. Tickets will be sold for $2 and $5. Some of the $5 ticket items include:

2 Lions vs Chicago Bears tickets on Oct. 5

4 Lions vs Washington Redskins on Oct. 26

2 U of M football vs Toledo on Oct. 11

4 Tigers vs Tampa Bay Rays on Sept. 27

2 Red Wings vs Atlanta Thrashers on Sept. 28

Autographed basketball by Antonio McDyess

There are many $2 ticket items ranging from restaurant gift cards, Salon hair cuts to gift baskets filled with goodies. I'm looking forward to a fun night celebrating love and hope for Kevin and his family.

Sincerely,

Julie

P.S. There are also (2) bowling parties for 16 people (a$250 value each) at Lucky's in Novi and a bowling party at Wonderland Lanes in Commerce Twp.

You can still buy tickets to the event at the door.

Nearing Kevin's homecoming

I spoke to Rachel, and apparently Dr. Gajjar plans on sending Kevin home the week of the 6th (2 weeks). Kevin sounds much more energized. We've spoken a few times a day the last couple days, and he's just been real animated and conversational. His counts are up over 2,000, which helps. They will fall though, since he's ended GCSF and we must see how far they drop. The transplant should start taking hold soon. Apparently Dr. Gajjar wasn't ready to talk about what we should plan as far as Kevin's returning to school. There also seemed to be some disagreement about whether or not to send him home with his hickman. He's taking the micro-fungal for the lesions on his spleen. Rachel was pretty adament about pulling the line before he goes home. We've heard all his infections have stemmed from having plastic exposed to the elements and running into his body. We'll see I guess. Worst case scenario they pull the line in our follow up visit for MRI's.
On another note we've received some kind messages from people in Kevin's school and the community. To answer your question, Kevin would enjoy receiving the notes from school mates. He wants to be missed, and wants to know that he's not forgotten. Also, one last reminder about September 29th. Monday the 29th Chilli's donates 100% of peoples purchases to St. Jude's Children Hospital. I know my family and I are celebrating my birthday and Alex (my sister's husband) birthday there on the 29th (his b-day 29th mine the 28th).

Take Care,

Eric

Getting Coser to Going Home

Kevin is officially back under E clinic's care. He is off of the heavy duty antibotics as of yesterday. This past weekend he had to get platelets but his hemoglobin seems to be holding strong, so no word of another blood transfusion. There is talk of getting him to eat so we can wean him off of the TPN. I will post more later hopefully. Hopefully we will know more after our next appointment. Right now we are waiting for Kevin to get labs from Assestment Triage.

Rachel

Pictures

Finally I found pictures from Kevin's birthday. There are pictures from Jake's birthday too.

Gathering Strength

Kevin was released today from the B.M.T. unit around 3:30 We went back to the Target House and relaxed and played with his Spider Man wax figure machine. He had fun with this, while showing obvious comfort not being hooked up to his big hospital medicine pole. He has redi-meds and T.P.N for nourishment that still gets hooked up through his line. However, his TPN has a backpack and the redi-meds are 30 and 60 minutes, so for the most part he's free. His TPN is administered over 12 hours so we schedule it so he's hooked up while he's sleeping for the most part. There was a pasta dinner at the dining area at the Target House toinight. This is always nice, as we get into our hospital schedules (especially when he's inpatient) time doesn't allow us to see our St. Jude friends much. I knew Kevin wouldn't be able to eat at the dinner, but I was hopeful he could manage some soda and maybe a cookie. He had a sip of soda, smelled the aroma of the pasta and garlic bread (this is before I even made a plate) and was sick within 5 minutes. He didn't make it out of our booth. Anywhere else this would be a little embarassing and Kevin would be really self conscious---not here. This is a common occurence, and staff members were on top of it immediately. I took Kevin to the bathroom to clean up, and we went up stairs to our room until Rachel and her Aunt Lannie arrived (with Jake of course). Rachel was kind enough to bring me up a plate as well, and we all had a nice pasta dinner in our apt. Rachel and Kevin spent some quality time watching a movie, while I visited some friends downstairs. Apparently Jake became pretty moody, so Lannie walked him around downstairs and found me playing pool. Jake loved watching me play, and was appeased for a good run of 4 or 5 games. It was really nice having Lannie here to help out. I think she really enjoyed spending time with Kevin and Jake. She has a really good heart. One of my good friends at St. Jude, Ali gave me some wonderful news about his daughter Aline. She has a fairly similiar type of brain tumor that Kevin has, although it's called a PNET, since it's in middle/front part of her brain. When initially diagnosed she was found to not only have it in an inoperable area, but MRI's also show that it metastisized up and down her spine. This put her in the high risk protocol. Radiation and chemo has managed to shrink her tumor from 6 X 4 cm to less then 1 x1 in her brain. And the spine is clear except for a tiny spot at the very bottom. I've become pretty close with Ali and was so incredibly happy to hear his news as he shared the recent MRI results with me this evening. The doctors expressed that they were very pleased and have told him her prognosis has gone from not so great to quite promising. I know 99% of the readers don't know them, but a few have met her and I'm sure will share my joy. She's always full of smiles, and bats her little 4 year old eye lashes at you when you address her. Unfortunately there are some sad accounts at St. Jude, but there are many good one's as well. Also our friend Heather (according to her blog) continues to gain strength and make great strides in her transition home. We're very proud of her!! Kevin was very talkative when I put him to bed tonight and lay next to him. We had a nice private talk that was motivated 100% on his end, and it was very positive. He believes in his heart and soul that he's beat this. I choose to believe him unless told other wise, and will not tempor his optimism. He talked one by one of his friends back home, and his memories and anticipation of further good times. I leave tomorrow and am already a little sad to not be with him. But I have a pile of bills and work to take care of back home. It's getting late, and we have an 8:30 labs appt tomorrow morning.

Good Night,

Eric

Last Day

Big day today. The nurses even mentioned it yesterday, that if things go well this could be Kevin's last inpatient day at St. Jude. This is only the early stages of the journy, but I can't help but be filled with optimism. It's going to be a hard road, but all we can do is fight the fight and pray everything goes well. I'll be going home soon. Kevin, hopefully will be following in a couple of weeks. Thank you all for your support during this trying time. At this point I pray Kevin's counts are strong for his return home. I can't wait to go shopping for the fish he chooses for our aquarium. Hope all is well at home.

Take Care,

Eric

Childhood Cancer

I am writing this after reading another child's story. A child who had the exact same tumor as Kevin, who had the exact same prognosis, the exact same percentage chance of survival. He didn't make it even through treatment. Probably one lone cancer cell went wild and proliferated tumors wildly within his small body. Here at St. Jude I have seen children die terrible deaths. St. Jude tries to do it with dignity, but really where is the dignity with all of the morphine they have to be on and their mothers still cannot hold them because the tumors running down their back cause so much pain? I am watching children (I mean CHILDREN!) go on end of life treatment. No child should ever have to be put on end of life treatment. I am angry. No mom should ever be told, well at least you have more children. What mom would ever wants to choose to give one of her children back to God before they have gotten to live a full life? What mom would it be easier for her to lose a child she carried for months within her own body because she has another child? Yes, I have been told, well at least you have more children. Like another one of my children can replace the other. To all the moms out there....would you be able to lose one of your children and just replace them like that with one of your other children?

Just the idea of losing Kevin caused me to push forward despite almost everyone nay saying something was wrong with him in the beginning. I will never forget that night waiting for Kevin's MRI the next day and how even the residents along with family made me feel like I was wasting everyone's time, Kevin just had migraines like his dad had as a kid, why couldn't I just accept that? Just the incredibly painful thought of losing Kevin caused me to research, to reach out, to try to try find the best place, the best protocol for Kevin to get treatment. Just the thought of losing Kevin caused my mommy instincts and see through the lies the oncologist at DCH was telling us when I grilled her about her experience and the protocol they offered us. Just the thought of losing Kevin caused me to pack up our almost 4 month old baby, myself, and Kevin within 48 hours and drive 15 hours through an ice storm to make sure he qualified for this protocol, to spend almost a year away from our home. I raced like crazy to get all of his medical records, the slide of the tumor Fedex to Memphis. God sent us an angel to help us get in the door, I didn't turn that angel away.

Ask any mom who has lost a child and having another child doesn't make the pain any less, doesn't remove the hole that will be a permanent part of her heart for the rest of her life. I am a mom and though I haven't lost a child I can see that hole in any mom I meet who has had to send a child back to heaven, even if she has more children.

No child should ever suffer through cancer. No parent, weither they have more than one or not, should ever lose a child to cancer.

Please sign the petition to raise RAISE AWARENESS & FUNDING FOR CHILDHOOD CANCER . Cancer is the #2 killer of children in the united states and gets a lot less funding than adult cancer research.

Rachel

Out tomorrow

The doctors are confident they will let Kevin out tomorrow. As I mentioned his counts are coming up, and they're seeing what they want to see overall. I've had a little stomach thing the last 24 hours. I mentioned it to Rachel when I came in this evening, and we agreed we should ask the nurse if it's safe for Kevin that I stay there. Although I don't have a temperature, I've been sleeping a lot, and have not been able to eat anything without consequence (stomach thing remember). Lucky for all of us her Aunt Lannie (spelling?) is in town to help Rachel out. The nurse quickly said that I need to leave the BMT unit, especiall with Kevin still being below 500. He understood, although I was pretty bummed. Aunt Lannie will stay with Kevin tonight. She's very kind, and has several grand children of her own. She'll do just fine with Kevin, and it will give him an opportunity to get to know her better, as she lives in Utah. So tonight, I"m in the Target House and will actually sleep in a real bed for the first time in nearly a week. In other news, our friend from St. Jude, Heather seems to be making a smooth transition back home. We're very happy for her, and has set a great example for Kevin's soon-to be home coming.

Take care,

Eric

Counts coming up

We recieved good news this morning from the Nurse Practicioner. His counts are coming up accross the board. His WBC is up significantly and more importantly his ANC is up to 200 (from 0) This more then likely means his ANC will spike up over 500 tomorrow. She wasn't sure if the doctors will let us out today or tomorrow, but at least now we know it's soon. Also, his Brain and Spine MRI came back clean. This of course is excellent news. He'll get his lumbar punture soon, but typically when the MRI's are clean the results of the lumbar puncture are clean as well. He's also eating a few potato chips this morning, which is an upgrade. When he gets out of here, we need him to gradually pick up his eating habbits. Overall a great morning!

Eric

Monday Night

Today has been a pretty good day for Kevin. He's still neutropenic (low white blood cell counts); in fact he's still at 0. With that he's a little weak, doesn't really eat, and experiences nausea. However, psychologically he's doing much better. Rachel and I have some difficult decisions to make regarding school. We hear conflicting information from people we talk with. One of the BMT Doctors who's speciality is infectious diseases, said in no uncertain terms that he should get home bound schooling for a period of 1 to 3 months when he goes back home. He said although his neutrophils will be up, which will protect him from Bacteria infections (which he's suffered 4 times since chemo) that his immune system as a whole will still be compromised which will leave him vulnerable to viruses. As we all know kids bring and share all kinds of germs and viruses to the class room. So, if we go soley by his advise Kevin will be homebound schooled for a few weeks when he goes home, until he's a little more equipped to fight off illness. However, we still need to talk to Dr. Gajjarr and I'd also like to talk to Dr. Hale. We've heard of both ends of the spectrum with kids returning home. Some hit the ground running (not like others, but pretty close) and others definitely need extra time to rebound. It's not clear which category Kevin falls into. I talked to him about it tonight, and he feels if it's safe he definitely wants to return. He said maybe if necessary take a week off to catch up on sleep, but doesn't want to miss more then that. He will be a large part of the decision, but if his counts are below 2,000 there's no way he can go back. The nurses I've spoken to who are moms for the most part, and work in the BMT unit have sides with the Infectious disease doctor. Saying November or December or even January would be much safer. I asked in a way of course that was what would they do. They were hesitant to ask if it was on the record (they don't want to interfere with doctors guidance), but when asked what if it was their child they spoke candidly. We'll speak to the doctors and see how his counts rise and go from there. His counts will go up soon, first above the 500 that it takes to be let out of the BMT level, then above the 2000 which is considered neutropenic. However, it's kind of a false count as he gets daily GCSF pushes through his line, which assist the rise of his counts for the short term. The actual Bone marrow transplant is more long term, but it takes a while. So once his counts go above 2,000 for two days in a row they'll take him off GCSF. Then we wait and see what his counts do. They'll actually probably shoot up to 3,000 or 3,500 for a couple days, then once the GCSF is out of his system they typically fall back down, although not down to the critical 500 or less levels. He really wants to go back a.s.a.p to see his friends, but we're not going to rush it if it's not safe for him. We're still kind of in an information gathering and wait and see pattern. We do need to tell his school something though. If he's going to be homebound schooled at first, we need to get the wheels in motion. For now I'm pleased that he exhibited some longing again for a return to school and a return home. A couple nights ago he was in a different place. He knows he has a big family to support him every step of the way. He feels comfort in knowing that we're nervous too, which is kind of a weird thing to say I suppose. When his counts rebound he'll have even more energy and I suspect will be even more eager to get back. I think accademically he's going to be ok. He'll start off behind a little, but he does like to learn especially when given positive feedback. We did some math today, and I was real impressed, and he really fed off of that. I'm not sure when we're out of here, as his counts will come up all of a sudden usually. My guess is wednesday or thursday. I hope everybody back home is doing well.

Take Care,

Eric

Sunday

Kevin was pretty low key tonight. Jake was getting squirmy and he needed to go for a walk and at first Kevin was going to go with us but when he sat up and started to get ready to go he started to feel queasy. So I went and got him a movie, Zanthera. He watched that while I walked Jake in the hallway until he feel asleep. Kevin and I talked about Halloween and how this one might be kind of different for him. The doctors have recommended that we drive him around for trick or treating as running around outside might be too much for him. He talked about different scenarios and he was upset at first, and then very maturely said, " Mom, if it just this halloween its no big deal, lets just try to make the best of it that we can." So that I will. This whole experience I think has caused Kevin to put life in a perspective that not even most adults have, including myself. Recently he has shown an ablility to handle tought social situations with class with one big expception, getting vitals done late at night.

Rachel

Scotty Lost His First Tooth

Here's a picture of Scotty with one less tooth. His first tooth came out today (with a little extra encouragement from Dad).

Hanging in there

Kevin's energetic mood dwindled a bit as the day went on. He experienced a little bit of nausea with Mike, and when I came in around 6:30 he was really tired. Kevin seemed to have a little bit of the blues today. This infection will turn out fine, but for his psychological state this additional inpatient stint was the last thing he needed. He's tired......In fact I think he's tired of being tired. I tried to cheer him up a bit, which isn't always easy to do. He's so sensitive to other people, he'll say what he needs to say so you stop worrying about him. I think he had a good time playing Wii with Mike today, and he did seem tuned in when we read a few chapters of a book tonight. I tried to cheer him up by reminding him we'll be going home soon. A few weeks ago he was so incredibly excited. Now he's glad to be leaving here, but said he's not as excited as he thought he'd be in going home. He started talking about how it's been such a long time and how so much has happened. We're all nervous, so I totally get it. I guess I was just hoping his excitement would pull us along with him. Kevin has immense pride. It's tough for him to come home, knowing he's the sick kid. He's excited about our fish tank, and that's honestly been a saving grace for both of us. He reads through a book I bought him (Freshwater Fish A to Z) religously. He loves pointing out a new prospect and saying "daddy do you think maybe this fish will be compatible with our tank"? It's really the only thing he mentions about home with any kind of excitement anymore. He had a really good bond with his second grade teacher and is still a little weary of the new start in his third grade class. I've assured him his 3rd grade teacher seems very nice and caring. This would not have been a good year for Kevin to have a real militant, bottom line, un-caring teacher. Thankfully it seems his new teacher is none of that. He's very self aware, and knows he's a little emotionally fragile right now. As kids get older they get more and more discerning with who they hang out with. And Kevin in no way wants to be some symbolic mascot for illness and sympathy. I think it's apparent as I've gone on here, that his blues became my blues. Writting in this blog is very theraputic for me, as I'm pretty introverted and introspective. Any way, I'm sure when he's feeling a little better he'll perk up. For the time being, I'm going to try and keep him busy with fun stuff, and not make him feel like he has to talk about things if he doens't want to. He's so much like me in that regard it's scary. He did show some brief joy when I told him Max is in his class. The combination of brain surgery, radiation, and high dose chemo has changed him in many ways...Some of which will be short term, and some not so much. We'll just have to embrace the improvements he makes and have realistic expectations. When he's on, his personality still lights up a room. That's something none of this has taken away from him. One thing he's never said is why me? I would be lying if I said that question hasn't entered my mind a few times. We will all move forward, and embrace the rewards life gives us from this point on. Sorry for the melancholy post. I usually try and stay very omptimistic, but I'm human and so is Kevin. And when your little boy is down in he dumps it's a bit contagious. We need his counts to go up, so if there are people praying for Kevin, please specifically pray for his counts to rise quickly (I know I am). We love St. Jude, but as far as being inpatient Kevin has had more then enough.............It feels better to get that little diatribe off my chest......I promise more cheerful updates are sure to follow :-)

Eric

Marked Improvement

Good morning!

The Nurse Practicioner who's been seeing Kevin the last few days just finished her daily update. She's very pleased with how Kevin's progressed the past 24 hours. She said his fever seems gone (according to temps taken every 4 hrs) and that the infections are no longer growing on the culures taken from his line. She was very helpful with all the questions I had last night. Well, actually Terri (Heather's mom) answered the one about why he went to 24 hour TPN, which is standard protocol when they go in with an infection. First off, they have identified the second infection in the other line; it's a alpha strep strain. She said it's an infection that's often times found in the mouth. The other line as Mike had shared with me last night, is an ecoli infection. She said that within the last 24 hours both have seemed to respond very well to the antibiotics. Now that the second infection has been identified they can consider taking him off of the second antibiotic and keep him on Vancomycen. That's the doctors call though so she couldn't say for sure. Next, they all doubt his HGB was really at 6.5, but are sure it was low. She said it jumped up past 10 quicker then possible after a transfusion if it were really 6.5. Any time you see critical next to your childs lab reports, it's not a comforting feeling. This was pretty much what Mike said as well, that they were doubtfull that low of a reading was accurate. Finally, she answered my quesiton about the MRI being so soon from his last round of chemo. She indicated there really is no standard period of time as long as it's over 1 week and less then 4 since his last round. They happened to have an opening, and figured they'd get that part of the protocol over with sooner then later. However, as I wrote yesterday his HGB was too low and he wasn't feeling well. He's feling excellent thi s morning though. The Nurse Pacticioner (I thin Litza was her name) said he looks great! She said this is the marked improvement she's been waiting for with him. He was cracking jokes during the entire exam. He's watching Ben 10 Alien Force now, and even contemplating having something to eat. I wasn't here when he was feeling pretty bad, but Litza and Mike both said he was feeling pretty crummy. She said now that he's looking this well, with continued antibiotics we shouldn't have any worries. Now that everything has stabalized, we start the arduous process of waiting for his counts to come up to 500. It will be at least another 3 or 4 days, possibly more. That's ok, all good news this morning!

Take Care,

Eric

Infection

Rachel, Scotty, Jake, and I made it to Memphis around 6:30 this evening. I arrived at the hospital around 7:45. Mike said one line the infection was identified but the other one they weren't able to categorize it. He's on several different medicines right now, including an anti-fungal, 2 different antibiotics, GCSF, TPN, Zofran, and Rantadine. Mike gave me some good information, but I'm anxious to talk to the doctor tomorrow. I have some questions I'd like answered, including why they moved his MRI up to today (which didn't happen because hig HGB was so low). And, his HGB read at the critical level (6.5) which is way lower then it's ever been. Finally he's on 24 hour TPN now instead of 12 hour....I'm curious why they changed it over. Apparently he was pretty sick yesterday, but hasn't been too bad today. He won't eat right now, but he's on TPN and lipids. His counts will probably be at zero for some time, so we'll probably be here until mid next week. His spirits seem good. I'll update as I learn more tomorrow.

Good Night,

Eric

quick update

Mike indicated Kevin's cultures were positive for both lines of his Hickman. This means he'll be inpatient until his counts return. Kevin had the exact same thing after his second round of chemo. From what I understand in my short oncology/infection St. Jude education, this is much better then the staph infection he suffered after his third round. He's on two antibiotics and alternating lines. Kevin will be fine. Rachel and I are flying down on Friday, and it looks like I'm staying until Tuesday or Wednesday.

We had the privelage of meeting Kevin's third grade teacher on Tuesday. I feel very comfortable with her, and feel it's going to be an excellent fit. She had a great idea, which is to meet with Kevin prior to him going back to school. She'll show him around the room, and more importantly give Kevin an opportunity to get to know her. Kevin can be very shy (like me I suppose), so I think this will be helpful. It's really important that Kevin feels like he can talk to her, and approach her if something's wrong. Also, this way his first day back at school, he'll at least not feel like a complet stranger to her class. We're thrilled that a couple of Kevin's friends are in his class. That's all for now. I'm update more when I'm down there.

Eric

Back in the Chili's Care Center

Kevin is back in the Chili's Care Center. I started packing up the bags as I put him to bed Tuesday night. His temperature was rising above 99. Then he woke up vomiting just before midnight and his temperature was 101. So now we're back on the 2nd floor in room #14 (green and orange room if you're scoring at home ... each room here has a different color scheme).

Just took a long break when I heard Kevin stirring. He vomited again. He's keeps complaining about being cold but his skin is hot. They took cultures and now he's back to sleep. He's already on antibiotics. It's past 2 am. I'm very tired myself and will try to get to sleep.

Mike

Daddy Mike on His Own

Everyone else is gone--including Rachel for the first time in over 3 months--and it's just Kevin and I here in Memphis. Rachel, Eric, Scotty, and Jake flew out in the early afternoon. Kevin and I spent the rest of the afternoon in the Medicine Room at St. Jude waiting for (then getting) an infusion of platelets and whole blood. It's a long day (2 hrs for a blood match, 1 hour for platelet infusion, 2 1/2 hours for blood infusion) but we passed the time with some Nintendo DS and a couple of NFL football games.

Kevin is doing well, but his neutrophil count is 100 ... pretty much no immune system. So far no fever but we'll be on the lookout for that. Just hooked up the TPN. We'll finish watching a movie then go to bed.

Mike

Pictures Pappy took while he was here

Quick blog

Kevin had a good day yesterday. We had to wake up very early, which neither one of us liked very much. labs went fine. His counts are good, but will fall probably mid next week. His appetite is slowly returning, but will again probably decline when his ANC is at 0. This will be over soon. We pray he doesn't have to return for infection. We're going to be vefy careful with him when his counts are down. Mike and Scotty arrived today. Rachel, Scotty, Jake and I return home on Sunday and Mike will be with Kevin the entire week. Maybe the change will bring us better luck with Kevin regarding catching an infection.

I would like to end this noting an important day:

Eat at Chili’s on Monday, Sept. 29, when Chili’s will donate 100 percent of profits from participating restaurant sales to St. Jude. Chilli's is one of the biggest corporate contributors to St. Jude. In fact the building of which Kevin received all 4 rounds of chemo is the "Chilli's Center"

Tomorrow we have a quick apt. in the medicine room so he gets his GCSF to help stimulate the return of his counts.

Eric

No More Chemo Party

Back at Target House

Kevin's left the hospital at a very reasonable time today. He was home by mid afternoon. Rachel, Mike's dad, and Jake all hung out with Kevin at the Target House his first day back. He's feeling pretty well. He has a massive craving for potato chips, but really won't eat anything cooked. This is fine though, since each snack bag has over 10 g of fat. He had his eyes checked by the Opthamologist this afternoon. He basically said they're really dry, which is probably causing the blurred vision. He didn't realize Kevin was in the Transplant unit until the end, then he instantly assured us that it's very common for transplant patients. So starting tomorrow we have the pleasure of putting drops (basic saline solution) in his eyes. He probably won't love it, but as usual he'll grit his teeth and handle it. The doctors and nurses in the BMT unit were wonderful. I think we'll miss them all, and I say that hoping he never ever has to go up there again (no infection, please!!). Tonight we played bingo at the Target House. It was a big turn out, and we started out with all kinds of grand intentions. How did we do? To quote Kevin, "We sure do stink"! Mike's dad finally ended the dry spell. His energy's pretty good, and his sense of humor is definitely in tact. To me, his sense of humor is the biggest indicator of whether or not he's feeling well. Mike will replace Rachel here next week, as she gets to go home and see Scotty as he's now in Kindergarden. We meet with Kevin's teacher on Tuesday afternoon, and have curiculum night for 3rd grad shortly there after. It will be a little different going back to school this time, for Kevin. After Radiation he went back to his 2nd grade class room, who already knew and loved him. I'm confident his 3rd grade class is wonderful people as well, but it will be brand new to him. He's kind of going to be the outsider coming in, as the rest of the class started their routine on this week, where as Kevin probably won't start until the 4th week of September or first week of October. This will all work it's self out, but I feel incredibly nervous for Kevin. He's a very sensitive kid (always has been), so Rachel and I will do everything we can to make sure his transition back to school goes as well as possible. I've blabbed long enough....I seem to do so when I worry about Kevin. The good thing is I'm worried about his transition back to school. That's a very good worry to have considering his travels.

Take Care,

Eric

Kevin's stem cell transplant and Scotty's 1st Day

Whew! It looks like we all made it through the 4th round of chemo! I think I still have a bit of my sanity in tact and not all of my hair is grey yet, just some of it. I am not fortunate enough to be blond and be able to hide any gray hairs very well. Kevin was in really good spirits this morning before his stem cell transplant. He is whiny any time he has to wear his mask but he spent most of the morning out of his bed and even tried to play a game of chase mom around the room dispite being attached to an IV pole. Before Eric left this morning we had him walk around the floor outside his room a couple of times. We handed out thank you's out to the BMT staff. Kevin got a headache once again and it appears that he is having trouble reading fine print, so we have an eye doctor appointment made for later on this week.

The stem cell transplant was at 3 pm (central time) and made him a little sick, he was not happy for about 4 hours after. We went through a whole pack of gum during the stem cell push. The whole process is a bit like mad science and makes his pee red which is a little freaky. But around 7 pm Kevin started to sit up again, think about eating and played webkinz.

I talked to Scotty and he was questioning if he had to go to school tomorrow for another full day. I guess the full day kindergarten is a bit much for him but I am sure he will get used to it. He misses his brothers terrible and really wants to be back in Tennessee. He was asking all sorts of questions like is it dark there yet? I could hear the longing in his voice to be there with Kevin, Scotty and I. He is such a tropper to put on a brave face for everyone and not crying. I have seen a number of siblings have break downs here when they have to leave their moms to have someone else care for them while mom takes care of the sick brother or sister. Cancer is tough on both the patient and the siblings. I am glad there are organizations out there that recongize that and support both the patient and the sibling. We will probably become more involved with them when we get back home.

Pappy says that Jake was pretty good for him today and they had a good time together. I really appreciate Fred bringing me dinner to the hospital each evening. We are typically there until 8 pm when Eric gets there to relieve us, I typically don't get lunch or even breakfast (other than a starbucks). I have to get Jake ready for bed as soon as I get back to the apartment and get ready for the next day which doesn't leave much time to get something for dinner even if it is carry out.

Kevin should be getting out of the hospital tomorrow evening. Hopefully earlier than later but hospital discharges can take FOREVER!

Rachel

Scotty's 1st Day of School & Pappy Visit Photo's

Long slumber

Kevin's just now getting up after nearly 13 hours of sleep. His vitals went very well last night, mainly because we had a great nurse who did them her self. There's a very different bed-side manner between the RN's and the NCA's. For the most part Kevin was able to get an entire night (and morning) of uninterrupted sleep. I've already met with the Doctor who said he's right on schedule to get out tomorrow late morning/early afternoon. We get to be a little lazy when he's inpatient, since all the meds go in through his line. We went over medicine's this morning, and it reminded me of the 90 minutes every morning and 90 minutes every night of hooking up his redimeds, disconnecting his redimeds, hooking and unhooking him from TPN, and of course flushes of both saline and heparin. The plan is to get him back started on TPN tonight, then as he eats more gradually ween him off of it. He gets a final Vincristine push in 6 days (which is his outpatient chemo) and that should be the end of it! He's well rested this morning, and in a good mood. His appetite is definitely not back, but after a week or so it should gradually return. We need to be very careful because we don't want him getting an infection this time around. Also, the doctor I spoke to this morning confirmed earlier reports that the marks on his spleen shouldn't be of worry as far as cancer goes. They'll continue the anti-fungal medicine and go from there, but it's their concensus that it's not something serious. I think this final round overall, has gone much more smoothly then the others. Perhaps we've just become accustomed to the daily regiment and side effects, but otherthen the middle of the night vitals Kevin's really handled everything very, very well.

Take Care,

Eric

A little weight loss, but hanging in there

We are one day away from being through this (hopefully) last course of chemo. Tomorrow Kevin gets his bone marrow stem cells at 3pm central time.

Today was pretty good, he is still a little frustrated about the diarrhea that he always gets from chemo. He basically has no control over it and that is very frustrating for him, but overall I think he deals with it well, probably way better than I would in the same situation.

Kevin did physical therapy today and a little bit of school. I am a little worried that he is getting really bad headaches from any physical activity more than a short walk. His headache was so bad after PT today that as much as he tried he could not work through it and we had to cut his hour of school short. After that he rested as much as he could. He is down a little under a pound. As soon as we are through the next couple of weeks of no immune system we will start working on Kevin getting some good nutritious food in him, as it is going to be important to do everything we can to try to keep him cancer free here on out. After this it is our turn, our responsibility to get Kevin back to good health and keep him that way for the rest of his life. The American Cancer Society has a website about nutrition for cancer survivors and nutrition for cancer prevention. I hope all of those around Kevin make a point to reinforce the importance of healthy eating and lifestyle, it is going to be incredible important to his survival as just by the natural of what he has already gone through is going to leave him more susceptible than the rest of us who have not had cancer.

Jake gave Pappy a hard time once again (Jake can be a real cranky baby at times). He seems to do pretty well during the day, but as evening comes he is ready to be back with his mother. We really appreciate Fred being here to help. I am glad the kids are getting time with him, since they live so far time is precious as we don't get many visits as we would if we were close.


Scotty starts his first day of kindergarten tomorrow! I am saddened that Kevin and Scotty aren't going to school together tomorrow. They should both be getting on that bus tomorrow morning together. I feel like somehow someone made a terrible mistake and we are still here, when Kevin should be back home starting school with everyone else. Of course that is not really the case, but I guess it is just how the situation feels to me. I think Scotty feels a bit of the same, he really isn't excited nor aprehensive about starting his schooling career, he is just rather ho-humm about it. Hopefully soon next month they will be getting on the school bus together, bugging eachother.

Rachel

A Pepper for Kevin

Join Chili's in the fight against childhood cancer.

Create a Pepper.

Find Find out more about Chili's Create a Pepper campaign please go to http://www.createapepper.com

At this moment Kevin is in the Chili's Care Center where he received all of his radiation, chemo and stem cell transplants. I call it the Ritz because Chili's did a great job, it really is a nice place with room for both the patient and the parents. We are so grateful to those who participated in Chili's create a pepper program with out knowing that Kevin would someday utilize the facility that so many donations built (Kevin's Aunt Sarah worked at Chili's during one of the create a pepper campaigns). Please go to Chili's website to learn more about their future plans and their latest create a pepper program. Create a pepper or just vote for your favorite!

September is Childhood Cancer Awareness Month.

Rachel

Good day

As expected Kevin had a much better day with the cychlophosphamide then the cisplatin. He ate fairly well, and didn't have any bouts of vomiting. He's been looking forward for some time, to watching the Ben Ten Marathon on Cartoon Network. This included a brand new episode as well. Knowing that this woul involve several hours of televesion viewing in a row, we used this as an incentive to do his mouthcare and eating today. Physically he's good, although I suspect if the pattern from past rounds continues, he'll probably have some vicious diarrhea tomorrow. He's psychologically fragile right now, so we do have some issues with the midnight and 4 a.m. vitals. He gets hysterical when he is woken up, and really works himself into a frenzie. The midnight session went so poorly that I decided to stay up for his 4 a.m. Then at 3 I noticed he started to stir. He's taking in enromous amounts of fluids right now to make him urinate every 2 hours. When the urge hits him he doesn't mind so much getting up, because he's feeling uncomfortable. As soon as I noticed this, I went outside the room and grabbed the nurse and requested she do the 4 a.m. vitals an hour early since he'll soon be up. Having been through the rough midnight episode she had no problem with this. It worked 100 times better since he was already up to urinate. I guess he figured he was up on his terms, so he was very accomadating this time around. I'm going to try and time it so we can do the same on both midnight vital checks tomorrow night. If the timing doesn't work out, I'm just going to have to wake him myself a few minutes ahead of time, so he doesn't get all worked up. I just realized tomorrow is Labor Day...go figure. Usually I'd be camping or canoeing, but obviously with the current situation there's no place I'd rather be then in the Hospital with Kevin. That said, I hope everybody has had a great Labor Day Weekend. Somebody put an extra chicken breast on the grill for me--lol. It's about 3:20 a.m. so I think I'll try and get some shut eye.

Take Care,

Eric