No immune system

Dispite Kevin having no immune system we could not avoid crowds today. They were in the medicine room, in the B clinic waiting room, it seems every place Kevin was scheduled to be at in the hospital, there were CROWDS! It was all because Miranda Cosgrove (iCarly and Drake and Josh) and the Jonas Brothers seem to be everywhere we were going. And dispite the fact we had watched a marathon of iCarly the day before (not knowing what the future held) Kevin could not be any less interested in meeting any type of Hollywood star. When the Jonas Brother's came into the medicine room and started to walked toward Kevin, he got out of there as fast as he could. He has never been so desperate to have another appointment. He actually wanted to go to the cafeteria (he never wants to go there).

Julie, Dean and their 3 boys along with Scotty met us back at Target House for the big lucheon and kareoke with the Jonas Brothers and Miranda Cosgrove. None of the kids in our group were too into the superstars, but very much into the huge cupcakes for dessert.

Aunt Laura met us there too, getting pictures just in case. She took Kevin upstairs to our room when he had enough. I stayed with Julie and Dean to spend some time with Scotty and get something for myself to eat since I never did get anything in the cafeteria and forgot to eat breakfast. Jake slept though the whole Target House thing. He woke up when we were the kids were on the playground and Scotty decided to crash his bigwheel into baby Jack which I immediately got after him for crashing into a baby.

It was 101 today. It is HOT here in Memphis. I walk outside and just sweat. Kevin hates his mask that he has to wear because he sweats underneath it. Jake loves the heat. He sleeps really well it seems when it is way to hot for humans. It has been almost 3 months since me, Kevin and Jake have been home. I am not sure how Jake is going to like the cold back up north where he really is from, even though he pretty much only knows Memphis as home.

Rachel

Dancing Jake

It is the first time we have ever seen him dance. We tried to catch it but he got a little camera shy. Here is a toned down version of what we saw:

A Pair of Shoes

-Author Unknown

I am wearing a pair of shoes.
Uncomfortable shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.

Out of the Hospital

Kevin woke up feeling well today, but once he got his once a month antibiotic that specifially protects his lungs from infection, he became quite ill. Truth be told he vomitted more this morning off of his megadose of antibiotics then he did the second or third day of chemo. After Zofran and Benedryl he went from getting sick to sleeping. We left the hospital in a wheelchair for the first time during treatment. My mom was concerned, but I assured her the Benadryl/zofran antinausea mix puts him out. Rachel and Grandma took him to the Target House while I finally used our Kroger Card (we get $100 card every Monday) and went shopping. When I came back Kevin was still down and was getting bothered from the smell of cooking, which is pretty much a universial side effect of chemo. I took him to the bedroom and we took a nice nap together. He slowly started getting some energy back as the afternoon progressed to the evening. Rachel picked up Mike and Scotty from the airport and everybody had dinner while I went for a run (can't run well on a full stomach of pasta). Kevin hit his peak tonight, and was his normal wise cracking self, although still physcially spent. Rachel made sure I took his temperature throughout the evening, and it was normal. He's back on TPN, so I suspect he may gather some of his energy now that he's getting nourishment. While on chemo they halt TPN (nourishment that goes through his hickman). The doctors have determined TPN doesn't mix well with chemo, though I'm not sure of the specifics. I think as the days move on, th combination of the chemo side effects and lack of nourishment brings him to today's state. I'm optimistic that he'll return to normal (his between chemo normal, not everyday normal) as the week moves on since his last treatment. The vitamins and overall nutrition from his TPN will most definitely help the process. He had a good night, and after I hooked him up for his 24 redimed Zofran and TPN, Grandma read to him for quite some time. They both ended up falling asleep, so I'll either sleep on the couch or the other bedroom. We hope and pray Kevin gets to go through this round without a fever, which he's had the last two rounds. When he's readmitted with a fever it's typically only been for two or three days. Three rounds of chemo has definitely taken a toll cumalitively on his body. The silver lining being of course that he only has one round to go. As odd as it sounds, the end of his treatment will be met with mixed emotions. I'm very happy Kevin won't have to suffer through further rounds of chemo, after next months 4rth and final round. However, there's a comfort we've all felt the last few months having Kevin's cancer being actively and aggressively treated. Though it's heartbreaking to see Kevin suffer, I've also taken comfort that the source of the sickness has been what's killing cancer cells that have evil intentions of reoccurence. When he comes home, we just hope and pray that the treatment was enough to fight off a reoccurence. When somebody gets a tumor in various other regions of the body, the surgeons have the advantage of taking out tissue much further away from the actual tumor. The brain tumor resection they take the turmor out, but have limitations of how much tissue they can remove around the perimeter. Alas, this is why we are at St. Jude's. This protocol has had very good results for completely resected medulloblastoma tumors. Part of my medically uneducated self wishes he could take a pill every month when he gets home that continues the assault on mutated cells. I'm still believe Kevin's going to be fine. I guess St. Jude has been an enormous source of comfort that we'll all miss. Kevin is excited for his birthday, and we'll make sure to make a big deal of it while here. I'm especially thankful to my work, who's allowed me to spend a good deal of time here. This has become home, and Michigan has become where I travel to every week to work. My house in Michigan is where I stay on my "business trips" back to Michigan. That's good though, as we couldn't be more pleased with the Target House and St. Jude. Next weekend I'll stay in Michigan for the 5k race that's benefitting St. Jude Brain Tumor research. The course is extremely hilly which is a bit discouraging for me, as I've done 90% of my training on a flat treadmill. I'll have to find a way to squash my competitive nature and run the race for the cause instead of competition (easier said then done). We have an early day tomorrow at the hosptial so I should sign off.

Take Care

Eric

Jake update

Baby Jake is working really hard on taking his first step. Tonight he had a whole group of nurses cheering him on as he practiced walking from me to our favorite in patient nurse Teresa. He does bye-bye almost always and shakes his head no if he doesn't want to. I appreciate all love the nurses give to him.

Kevin just got done playing Chutes and Ladders and Life. this morning was a little rough but by late this afternoon he was back to being hungry and wanting to play.

Hope all is well where ever you are.

Take Care,
Rachel

Bone Marrow day

Today should be our last full day/night as an inpatient, this round. It's almost 10 a.m. and Kevin is sleeping peacefully. As his energy level's grown, so has his intolerance for being woken up for vitals in the middle of the night. He's been very defiant with the nurses. They're not doing anything that hurts him, only taking blood pressure and temperature. But he get's woken up just the same, and at that point he's none too happy. I usually give them 2 or 3 minutes before I intervene (daddy doesn't want to be the bad guy). Like I said it's not like there doing anything painfull, but i think once he's woken up it becomes a battle of the wills. I think it's his way of showing that he still has some controll. Still, he passes the line of what's appropriate, thus I'm going to have a talk with him when he's wide awake today. Other then that, he's doing great. He's not been close to getting sick. He knows at this point how far to go when he eats (not very far), a lesson that took a little bit of time. He's usually have good intentions with food, but after a few bites he becomes a little nauseaus and knows to stop. He goes back on TPN after his Bone Marrow Transplant today, so his weight should come back up to where it was at before being admitted. He's been very active. He was with my mom and Rachel from noon until a bit after 8. I brought Brad to Beal Street. We shopped a little and had dinner at BB Kings (excellent ribs). When we got back Kevin was playing in the game room. We ended playing Uno until 10:15 at night--Kevin won! He's a little nervous this morning about the BMT. Last time he got pretty sick. It's not toxic like the chemo, but still it's a lot for the body to take in. Hopefully it goes better this time. Last time it was a rough hour. His counts are still high, at 2000. Probably Monday he'll be down close to 0. At that point Rachel pretty much keeps him away from people. He's woken up now twice, and went right back to sleep. After today we're 3/4 of the way through!!!!

Take Care,

Eric

Rest Day

Kevin's had a great night yesterday. Today is a rest day for him before his Bone Marrow Transplant tomorrow morning. The transplant will be a little more involved today as it's more then just stem cells. The transplant takes place in order to revitalize his immune system, which the chemotherapy attacks (specifically his bone marrow). Kevin has had a pretty non-eventfull cycle this time around, save for the first day. The Cisplantin day is something none of us ever look forward to. Only one more day of it, next month, and it will be a distant memory. He's watching Tom & Jerry right now. It so reminds me of myself at his age. I spoke to the Dr. this morning and he said since he's getting the full Bone Marrow Transplant this round, he'll have to stay one more night. He said they'll try to be proactive Thursday night, so that everything's ready for him to leave mid Friday morning. His counts won't be all the way down until early next week, as it's a delayed response. Thank you everybody for your prayers and support for this round.

Take care,

Eric

Kevin's upcoming birthday request

Kevin's birthday is coming up in early August. He is asking that in lew of gifts for him family and friends send items for him to donate to the treasure boxes at St. Jude. There are always lots of things for girls, not much for boys. There are some rule though:

No stuffed animals or any soft cloth type toy. Most of these kids have compromised immune systems and toys like stuffed animals are the worst at harboring germs.

No toy guns or weapon of any kind.

The toy must be new and in orginal packaging.

St. Jude does have a wishlist on Target.com so or I hear. Some ideas are legos, superheros stuff, DVD's, Mad Libs, those light wands (like the ones they sell at kids venues for waayyy too much money), hard plastic animals or dinosaurs.
I will post more information as I get it.

Rachel

Pictures

Not much today. A little diahera. He ate an ice cream bar, some soda and tried some chicken nuggets.

Jake isn't eating. I worry he is showing signs of stress with all the different people coming in. It is difficult on an infant to have so much change all the time, not like Kevin and Scotty who can understand some of it.

Well Eric & Brad are here so we are going to head home. It is past 9pm and has been a long day.

Rachel

Monday

Today was a much better day for Kevin. The Cisplantin and Amophostamine always do a number on him the first day. The Cisplantin is considered the high dose chemo. It takes 6 hours to finish, which shoud give everybody an idea of how large the dose is. Today's and tomorrow's chemo is cycholphosphamate (spelling terribly wrong) which is a much smaller doseage. He also takes Mesna to protect his kidneys and bladder. He did very well today. He had an appetite and played Wii with Uncle Brad. He even played the Sports Wii Bowling game which required him to stand up, and simulate a bowling toss. It's around 11:15 and he's been sleeping peacefully for over an hour. He has the potty brakes down, as he does his business in a half sleep state then goes right back to sleep. I told the nurse I'm good till 4 a.m., but after that I'd appreciate help with his "breaks" and she had no problem with that, or even earlier if I fall asleep. Tomorrow I'm going to try to see the new Batman movie with my brother. It will all depend on how much work I have, but I think we'll find time. My mom seems to have gotten into a rhythm with the hospital stay as well. Myself, I've been reading a lot......The Chris Farley Show, a new Biography is one of the better books I've read in years. For those of you who are saying to yourself it's probably the only book he's read in years....ha ha ha (Brooke). All is well overall and either Rachel or I will report further progress as this round of chemo moves on.

Take Care,

Eric

Cycle 3 begins

Kevin and I woke up this morning around 7:45 knowing chemo was starting soon. I hoped he would have a little better day. Once the Cisplantin and Amophostamine were given he was pretty much sick right away. He spent the better part of 90 minutes with his little face over a platic tub. It was obvious his body wanted no part of the chemo today. He was given Benadryl and adavan on top of the Ondastatron that he takes every day (all 3 anti-nausea meds). This did the job of settling his stomach and gag reflex down, but it pretty much put him out for the day. Rachel and I agreed that it's better to have him sleeping hours on end, then continuously getting ill. I left around noon as Mike did his last shift before his flight home. Rachel picked my brother and mom up at he airport. Rachel went back to the hospital with my mom to be be with Kevin (along with Mike Scotty and Jake). As I understand it, once he woke up again he pretty much got sick for another hour or so, before the cocktail of meds put him back to rest. This cycle so far has mirrored the first round much more then the second. All in all he's okay though. He had about a 4 hour window of time where he was awake, and he took advantage. We watched Scooby Doo Two the movie, which he enjoyed. I also read him an entire 100 page kids book I let him pick out yesterday. It was nice to crawl in bed and read to him. The vomitting stopped but the other end wasn't as settled. We had another hour of "fun" getting him cleaned up and getting his bed changed and the floors scrubbed. We watched t.v. for a 1/2 hour or so, and he let me know that he's ready to go to sleep for the night. So far so good (it's about 12:30). We'll see if he's able to make it through the nigh without major incidences. His attitude is still good, and he's making the most of the windows of time when he's not miserable. The following two nights will be the tough ones. I've described the last two rounds about the getting up every 2 hours to make sure he urinates, so as to protect his bladder from damage. It will be a fairly challenging couple days for both of us, but we'll get through it together (I have some important things going on at work, so I probably won't have the luxery of extensive naps during the day). It's nice to have Brad and my mom here, although Rachel will probably see them more then I will. What's important is Kevin sees them. My mom is so good with the messy stuff, she'll be a great help with Kevin tomorrow. The combination of his extended sleep and the cloudyness from the meds, led Kevin to the conclusion that he had been in the hospital for a few days when he woke up. Perhaps it was wishful thinking :-). Thank you to everbody who sent me kind text and emails celebrating the good news of the clean MRI's.

Take Care,

Eric

Thank Heaven for St. Jude

I know I don't express this much but I am grateful Kevin is on the SJMB03 protocol. It is this protocol which brought us to St. Jude. Detroit Children's Hospital offered us a double randomized radiation protocol which included 12-18 months on chemo. It is the radiation part that is key (of course coupled with chemo) to kicking this cancer and the lower dosage from what I understand is causing a higher rate of recurrance and even death than what the SJMB03 is seeing. I find it a hard pill to swallow, being grateful for just an increase chance of Kevin surviving this. I am reminded with each child's death that I hear of not to take this for granted. I know there is no promise that this will work for Kevin, hopefully God will shine His grace on Kevin and give us a miracle, letting Kevin be one of the 85% who get cancer free, hopefully cancer free for the rest of his life.

You can read more about Kevin's Dr. and the protocol he is on by click here.

Rachel

3rd cycle begins tomorrow

It's about 8:45 p.m. and we've been in our hospital room now for about 30 minutes. There's a 2 hour Avatar movie Kevin's been totally pumped to see. It's the season and possible series finale of Kevin's favorite Nickolodeon animated series. I mst admit I enjoy it too. We've watched dozens of episodes together. My point is, our entire night has been predicated on Kevin missing as little of the movie as possible. Not an easy task seeing that the movie is 7 to 9, and our hospital admittance was at 8. I packed our bag, and we sprinted out of the Target House as soon as a commercial started at 7:45. Then we got to the Medicine room to wait for the nurse from to walk us to our room at BMT. When she greeted us she agreed to wait for a commerical, which was only 20 or 30 seconds following her arrival. We made it to our room before the commercial ended and Kevin's been his typical tunnel visioned intense Avatar watching self. He even shhhhhushed the nurse when she came in.....Obviously I corrected him, and he behaved and let her take his vitals. The doctor came in as well, and spoke softly so that his concentration wasn't effected. I asked the doctor if she'd seen his chart, and she said she had. I asked her how his MRI results were and she said she hadn't seen the reports, but that if something came up we would've heard. That was nice, but not the definitive information I was looking for. The doctor agreed to go look up the Preliminary reports. She came back a couple minutes later with the printouts which read a bunch of medical jargon (good delineation of the brain, vascular flow appears grossly patent, etc, etc.), but in sum the final impression read no evidence to support disease reoccurence or significant change. This is the information myself and Kevin's other loved one's hope, pray, wish, beg, and make deals with God to hear. Today I'm thankfull, but there's 5 years of MRI's to go until we're remotely out of the woods. That's okay.....Today's a victory, and we'll take joy in each one. Kevin starts chemo tomorrow and in is pretty much indifferent. Kevin actually shushed the doctor as she was telling me his MRI results. I know that sounds awful, but I'm glad he's taking joy in things. He very much looks forward to things and gets great enjoyment out of them when they occur. I apologized for Kevin and explained how he'd been waiting for this movie and it's all he's talked about since I got hear this afternoon. She smiled and said it was actually great that he's enjoying things like that.

I also want to remind everybody the Advokate 5k is 2 weeks from today (August 2nd) at Rochester municipal Park. Once again, this is a 5k event that has 100% of proceeds going to St. Jude's Brain Tumor research. My brother and I are definitely in, and I hope to see many others I know there. I forget the website, but if you google Advokate 5k 2008 you'll get the event website and registration. I've been training pretty hard, but my sleep deprivation has caused quite a few ups and downs in my running. I'm a competitive person, but I'll have to swallow my pride and run as good as I can knowing my time will be much slower then what I'm accustomed to (20:21 5k last year). Rachel and I will keep everybody posted on Kevin's chemo progress this week.

Take Care All,

Eric

Happy Birthday

This week Rachel's had her 3?th Birthday. I lost my password to get on the site, so I was unable to sign on yesterday. Anyway, although it's probably not the ideal place to spend her birthday at least she has her family there to share the day with.

Today's a pretty big day for Kevin. He has his brain MRI, spinal MRI, and lumbar puncture all in the same day. I believe he will be sedated for a good portion of today. The combination of seeing him go under and watching him wake up in a very foggy (at best) state is very tough. Last round of MRI's I was there (when Kevin and I went back after our month off), and it's never easy. I feel for Rachel having to see her baby go under, then wake up often panicked. He very much detest anastesia and doesn't come out of it very happy. I leave tomorrow afternoon for his Saturday night admitance into the hospital. Today my thoughts will be with Kevin all day long as his body endures the litany of test. Hopefully Rachel will update the site some time today with updates. I'll call her periodically throughout the day.

Take Care,

Eric

New Computer

With my birthday this week, our anniversary next week and a little encouragement from my inlaws, Mike bought me an inexpensive computer and now I am not computerless. Whew! I have everything from organizing who is coming to help me to keeping in touch with those back home via the computer. Who knew we were so dependant on it?

Well Kevin has had a great week, so we have done touristy things. Grammie and Pappy are here to help and they leave right before it gets ugly around here (how lucky are they?) Kevin has a long day at the hospital on Friday, full of MRI's and a lumbar puncture to monitor if any cancer cells are trying to rear their ugly head. Please pray any cancer cells are forever gone from his body. I think these scans will forever be nerve racking.

Here are pictures of this past week:



I also came across an article about improving chemo therapies for brain tumors. You can read the article here: Researchers at the University of Rochester Medical Center have coined a simple formula that predicts how well a certain chemotherapy will work for targeting brain and other nervous system cancers. The formula, which publishes mid-July in Cancer Chemotherapy and Pharmacology, is pegged to two important proteins that compose such hard-to-kill tumors - one of which, ironically, makes them so drug-resistant in the first place.

Rachel

No Computer for Rachel

I am using Eric's computer to post this. My computer got attacked yesterday and is completely dead. I think the hard drive is toast now, but I am not very knowledgable about hardware stuff. So there might not be many posts this week from Memphis, unless I talk Mike into a new laptop this week. It isn't looking promising right now though.

Rachel

Day & Night out

Kevin and I enjoyed sleeping in today until 9:30 a.m. This puts my 2 night sleep total over 16 hours. I can't state enough how much my body needed to recover from several sub 4 hour nights in a row. Enough about me though. Kevin woke up a tiny bit of nausea, but not to the point of getting ill. He just didn't want to eat any breakfast. I've figured out that the mornings his stomach is the weekest, because the 24 hour redimed of Andostentron is wearing off. So basically the first thing we do when we wake up is hook up his redimed nauseau medicine (though his hickman), then hook up his vancomycen, which is the antibiotic he's finishing up from the infection from over a week ago. Next we unhook his TPN. This process takes us about 90 minutes, as he has two lines in his hickman. So anyway, after this process this morning, and another hour or so of cartoons Kevin and I decided to make the most of the day. This weekend there were no hospital apointments so other then the daily medical duties, it was completely free of time constraints. Kevin was feeling quite well once his andostentron kicked in, and we made the most of it. We met Rachel and Scotty (Mike stayed with Jake and picked up his parents from the airport) at Jillians. Jillians is the game place and restaurant, much like a Gameworks or Dave & Busters. The boys had a great time. Kevin had tons of energy and played game after game at a frenetic pace. He ate a decent portion of his lunch even. The boys earned their share of tickets and racked up the prizes. Scotty, who very much looks up to Kevin decided he wanted to get whatever Kevin picked out for his half of the prizes. Kevin couldn't decide on his second prize, and after going back and forth for a bit, the young man behind the prize desk asked if Kevin was a st. Jude patient, then proceded to give him both prizes so he didn't have to decide. Kevin was very grateful. In the evening Kevin, Rachel, Mike, Scotty, Jake and Mikes parents took the trolly to Beal Street. I met them and Mike's parents treated us to a really nice dinner at Rendezvous in downtown Memphis. The smell of barbque was not very inspiring for Kevin's appetite, but he nibbled on a ham and cheese sandwhich (I got the BBQ ribs). It was getting late so Kevin and I went back to the Target House. This included a lot of walking, as in downtown Memphis parking close by isn't easy, especially at night. Kevin walked without complaining. We didn't get home until close to 10. A few weeks ago Kevin would've fallen asleep in the car. Not tonight, Kevin was wide awake and had lots of energy. It was so nice to see him feeling so well, that I let him stay up (and of course had to go through the night time medicine protocol). I finally talked him into going to bed. He coerced me into reading to him even this late. Then Kevin was in a talkative mood. He asked some questions and had some commentary that seemed far beyond his years. I'll keep the details between us, but he talked a lot about his cancer, and his future. He was very calm, and deliberate. He's very confident that he's beat this, and will continue to do so. He's excited to go back to school, and doesn't want to do homebound schooling even for a few weeks. He can't wait to play basketball again. He's aware of the very few limitations he will have (because of his shunt) and is at peace with them. If attitude has anything to do with healing, this cancer never stood a chance. His strength, resiliency and ability to grasp minute details and the big picture is astounding. This was a great weekend. He didn't get ill once, and his energy level was the highest I've seen it since he was home for the month inbetween radiation and chemo. He's not even nervous about his last two rounds of chemo. He knows what to expect and is confident he'll have no problem handling it. If I had half the strength this 7 year old kid of mine has, I'd be in such a great place. Tonight more then ever I seem at peace with what's going on. It's been a great weekend, and I hope Kevin continues his progress with Rachel, Mike, and Mike's parents this week. It's pretty late, and I've rambled enough.

Good night all,

Eric

Same old Kevin

As Rachel wrote, Kevin's doing quite well. We had a short day at the hospital, although we both would've rather slept in a little. He ate an entire Happy Meal, which quite honesty is as good or better then he was before he was sick. We ran some errands, and have been back at the Target House now for a couple hours. He's been infatuated with a Lego's Dragon Fortress we picked up while at Walgreens. He's even assembled much of it himself, which is actually geat practice for his fine motor skills. Overall he's on schedule if not ahead. Another positive I've noticed this afternoon, is that we're hanging out at the Target House, he's not lied down once. He's been sitting straight up, active, and talkative. As for me, I slept almost 7 hours, which is probably about the sum of hours I've slept in Michigan Sunday through Wednesday night. I guess it's not too hard to figure out that my body and mind is much more at ease while I'm here with Kevin. If Kevin can endure all he's had to go through at 7 years old, I think I can probably handle not getting enough sleep a few days a week. Thankfully I'm able to catch up here in Memphis. Kevin Rachel and crew plan on going to the Peabody this evening to watch the Ducks march from the elevator the the water. I've wanted to see this, but I think I'll use the couple of hours of free time to go for a run. Kevin's MRI's are next week. From everything I've heard, this is not the time that cancer typically re-occurs. Still, we could use all the positve thoughts and prayers that Kevin's MRI and lumbar puncture are 100% clean. I don't know I'll ever get use to the everything 3 month MRI process we'll endure for quite some time. But I'm very optimistic that Kevin will remain cancer free.

Sitting here writting this next to Kevin, I think I realize what I miss most about him when I'm in Michigan. He loves to watch cartoons, and parrott funny lines from certain episodes, then follow it with his trademark laugh. His laugh has always been contagious.

Take Care,

Eric

Still going good

Kevin ate part of a hot dogs yesterday, a little bit of pineapple, a ton of watermelon, 2 helpings of pasta I made for dinner (it was homemade so it had lots of good stuff for him in it) and ice cream. It is the first time in a long time he has eaten that good. I am typically happy to get just a couple of bits of something down him a day. So this was great!

I am really enjoying spending time with my sister in law Beth as we don't typically get much time together living so far away. She has been a big help and I will be sad to see her go home on Saturday but I am sure she misses her family back home! She has been the best at bath time with Jake and Scotty while I do Kevin's TPN every night and helping me get all the kids ready in the morning to go to the hospital each day.

Eric arrived safely last night and Kevin fell asleep on the couch waiting for him to come in. Today Kevin just has art camp, no doctor's visits which is a first on a weekday for us! I am taking advantage of having Beth and Eric here and going to get a hair cut today for the first time in months.

A friend of mine has a brother in-law that is going to have brain surgery today to remove a cancerous brain tumor. Could you all please lift Tim and his wife Sara (my friend Amanda's sister) up in prayer today?

Thank you!
Rachel

My 3 busy kids

Kevin and Scotty are finding their way into the routine of a once a day argument. It typically is Scotty irritated about something and then doing his best to get on Kevin's nerves. Or Kevin does get irriated over the littlest sound and jumps all over Scotty's case. But overall I think they get along very well. And I am seeing first hand how important their normal, healthy relationship is, even though they bicker. It is apart of what it helping Kevin make it through this. They are boys, and especially Scotty and Jake are very energetic. Kevin is too weak to have much energy to keep up for the most part but he does play the DS with Scotty and they watch lots of movies together. Every now and then they even argue about what the movie is about if Kevin thinks Scotty isn't getting it.

Aunt Beth is a big help this week. The boys are loving having her around. Though Kevin has made it very well known he wishes Jack, Sam and Uncle JP could have come too. Kevin loves having everyone all together. He amazes me with his sense of family at such an young age. I too am enjoying a chance to spend time with my sister in-law that I don't think we have ever gotten in the almost 6 years I have been married to her brother. I am glad this week has turned out to be an easy one.

I go through spurts of grieving about the loss of my son's health, though I believe it will eventually be okay (never normal or healthy the way it should be, but it will probably be okay someday). I think yesterday I was having a moment and grieving for the close knit family I really wish I had sometimes. I am pretty close with my middle sister and my stepmom is great too, but I think this is too much on most of the family. It just causes me to be sad sometimes. The family situation I came from has been so splintered for so many decades, I am beginning to give up hope on it and just believe it is beyond repair. It also is lack of a mother whom should know me best when I am feeling the world on my shoulders and it is that missing piece that sometimes hits me like a ton of bricks, usually in the moments when I am scrambling to figure out how best to protect and nurture my own 3 children through this very unstable time that causes most of my anxiety. Relinquishing any one of my children doesn't seem to be what is best for Kevin, Scotty or Jake. Though I have had to on occasion, I think God meant them to be a package deal which for the most part makes it pretty inconvenient for everyone else.

I am very appreciative to Eric's sister and Mike's sister whom have been a great supporters to all of us and I have been blessed to have a husband who has been pretty understanding through all of this so I know all is not bad. Eric has been great too in taking a very active role. But I think one of the jobs of mom in coordination of care and that sometimes is overwhelming when you feel like you have to burden a bunch of people with asking/begging for help. I so appreciate all of you who help keep me going when these blues hit.

I am becoming more and more of the belief that families are best when they are together. I can see first hand here at St. Jude that families can heal a sick child if they are able to come together. I hope I am raising Kevin, Scotty and Jake to stand by each other through thick and thin no matter what, no matter how bad the timing. I hope I will always be able to to be there for them in their time of need.



Rachel

Aunt Beth is Here!

Sunday sent Eric and Mike back home but brought Aunt Beth here. Kevin and Scotty were very excited to see her and have her here with us. At first Kevin was really sad that Jack and Sam did not come with her. Once I explained to him why they couldn't come he seemed to understand. Scotty insisted on sleeping with Aunt Beth last night. I hope that worked out okay for her. Everyone is still asleep. So far this looks like an easy week. Kevin's counts are so high they don't plan on doing any more labs until Friday which seems really unusual for me. It seems like we are typically still doing blood and platelet transfusions which require hours in the hospital.

Kevin is scheduled to go in patient for round 3 of chemo Saturday July 19th. My anxiety attacks are back and I am not sure what it is about this round of chemo that is making me so uneasy.

Old family movie

I was trying to organize all of the photos I have on my laptop when I came across this movie I made a couple of years ago. Time has gone by fast and Kevin seems so much older now. I feel so much older now (and as Eric will happily tell anyone about the grey hair that I have showing now).

Pictures from after Kevin Got out of the Hospital

Happy 4th

Today ended up being a wonderful day. We woke up around 8:30 to Dr. Hale's morning rounds visit. Kevin's ANC count spiked up to 2000, which is far above the 500 minimum, and quite the rebound from 0 just a few days ago. Kevin's infection has cleared up in both lines. They still have us doing vancumecyn dwell flushes, and we have to alternate lines. Its a bit confusing for us, so I imagine that friends and family have no idea what I'm talking about. After Kevin was released from the hospital he went with Rachel, and I went back to the Target House with grand intentions. Let's see, I was going to do laundry, do the dishes, play some pool with friends I've made at the T.H., and run 7 miles on the treadmill in the gym. But first I figured I'd lay down and watch a little t.v...........I woke up on the couch 4 hours later! My afternoon plans were great in theory but apparantly my body thought else wise. I suppose after only a couple hours of sleep the other night (3 a.m. flight, following several hour delay at Metro Det) I needed to catch up. I eventually caught up with Rachel, Mike and the boys for dinner. We went to the big 4th of July fireworks show on the bluffs by the Mississippi River. Kevin did wonderful. He very much enjoyed the fireworks and did very little complaining. He was a little tired waiting for them to start (45 minute delay), but once they started he (and Scotty) were captivated. None of us brougt a camera, which was a shame, because the view was surreal. The ride back to the T.H. was pretty awful with down town traffic, but Kevin rested peacefully in the back seat. I didn't get him back until a little after midnight, and he was ready to hit the sack. He patiently waited for me to disconnect one of his 1 hour meds, and fix a TPN alarm that was going off on his pump. There seemed to be little annoying variables like this today, that Kevin didn't let get to him. Kevin told me when his TPN was running smoothly, that he had a great night. Tomorrow we plan on seeing Wall-e at the movie theatre. That's what's been going on here. I hope everybody had a great 4th!

Take Care,

Eric

Feeling great

Kevin's been better then I've seen him in quite some time today. Of course I usually see him most when he's inpatient and undergoing chemo, but that's when I'm needed most. Kevin's very active today, great spirits, and his typical comical personality. We watched a movie this afternoon and around 5:30 or 6 I noticed he had quite a bit of energy. We went for a walk around the second floor a few times, then stopped in the play room. We engaged in an epic battle of Battleship, probably for 30 or 40 minutes. I was really proud of him, because I won (in a close game) and he was very well behaved and even humorous in defeat. He kept lifting his battleship up that I sunk earlier in the game, and would say "I'm on fire, I'm on fire, abandon ship, help us out here". The nurses were all pleased to see Kevin walking around and in good spirits. It's almost odd being inpatient when he feels so well. I came in much earlier then usual for the night shift (around 2:30) because I wasn't able to see Kevin last night. My flight out of Detroit was a disaster. Let's just say I was in the terminal from 7 p.m. until close to 3 a.m. Finally when we were all about to give up the plane we were waiting for from Columbus landed. I didn't get into Memphis until 4:30 and after a 45 minute nap on the ride here, couldn't fall alseep at the Target house until it was light out. Needless to say I look forward to an early night, although seeing Kevin so well has given me plenty of addrenaline to pull me through thus far. It looks like he's getting out tomorrow afternoon, so hopefully we'll be able to watch some fireworks or something tomorrow night. It was rough not seeing Kevin for a full week, but it was also nice to sleep in last weekend. I hope everybody has a fun and safe 4th of July.

Take Care,

Eric

Staph Infection

Well this time we have a reason for the fever. Kevin has a staph infection. I guess it can be common in this place and he is on heavy duty antibiotics. The surprising thing was his counts. He was at zero ANC yesterday. We were expecting them to come up slowly but he is up to 700 as of this morning and that means his immune system is coming back fighting. If his counts continue to improve tomorrow we maybe able to to blow this joint and actually get to see some fireworks tomorrow. That is what we need prayers for is a nice, fun evening of bring together and some fireworks. It is Jake's first 4th of July. I am not so sure he will appreciate it, but maybe he will get to surprise us. He tends to like loud noises. Scotty hates loud noises and covers his ears anytime even a toilet flushes.

Kevin is looking pretty good and playing the wii with everyone, including his doctor. Dr. Hale started to beat him yesterday and Kevin smartly said, " humm, I think mom should play again." (I typically lose to him). But Dr. Hale gave me an advantage I kept, and won for the first and probably last time ever.

I think we have all enjoyed being able to be a family this week. It is really tough on the boys with all of the shuffling around. It is impossible to get Jake on any type of schedule. Mike does really well with getting him to nap, but I think Jake is secretly daddy's little guy.

Thank you for all of the prayers for Kevin. God must have heard them, we certainly werent' expecting his counts to jump up that quick.


Hope you all get to enjoy your 4th of July too!

God Bless you and your family,
Rachel

Fever

Rachel's quite busy so I'm updating the blog today. Kevin has been feeling well but had his temperature taken today, and unfortunately it read 101 degrees. That's above the 100.3, which means right now as I type this Mike and Rachel are getting Kevin admitted to the hospital. They move very swiftly when their counts are at zero. They treat them as if he has an infection as soon as he's admitted, giving him antibiotics through his hickman. They'll take some blood cultures to determine if he does in deed have one. Last time he didn't, so we're hoping for the same results. This is pretty standard, as Dr. Hale told us a patient often time goes into every cycle for a few days when their counts are down. Thankfully Mike's there tonight, so I can fly out tomorrow. I'm tying up a lot of loose ends at work, and have an important meeting tomorrow afternoon. Hopefully Kevin's hospital stay will be short term. Rachel or I will make sure to keep everybody posted.

Best Regards,

Eric