Blood Transfusion for His Birthday

Kevin started his birthday at 9:30 am with Physical Therapy. Kevin, Scotty, Jake. Grandma Skousen and I finished the day off in the medicine room with a blood transfusion. This time it wasn't that bad and we got out of the hospital at the reasonable time of 8pm. We missed picking up Jake's antibiotic for his ear infection by 15 minutes at the pharmacy across town! So poor Jake (and me since I am the only one who ever gets night shift with him) is suffering through another night with his ear infection until we can him on his meds.

Overall Kevin was pretty ho-hum about it being his birthday, but who can blame him? I appreciate all those who called to wish him a happy birthday and let him know even though he had to spend it in the hospital it still was a special day.

Scotty is having a really tough time not feel betrayed by his older brother Kevin choosing to give all of the cool toys everyone sent (to donate to the treasure boxes at St. Jude) when he could give the toys to him if he really doesn't want them (this whole thing just confuses Scotty). After a lengthy discussion about why Kevin is doing this and that for his birthday he can do the same thing (we get him one big toy and he donates the rest) I am hoping I got through but more than likely I will have to rehash the whole thing one more time. Scotty almost always thinks of Kevin first when he get a new toy and almost always insist that we get Kevin one of whatever he gets. So I just think, like most adults, Scotty just feels overlooked and undervalued by his big brother he admires so much. It is a very adult feeling for a 5 year old to try to understand.

Last week each one of the kids came down with something or had something go terrible wrong. And now this week each of them is on their own course of medicine and treatment. Don't they know I am one person? Shouldn't this be a one at a time type of thing? Well at least I appreciate Jake for sticking to something like an ear infection, which is common and treatable. As for the other two, I hope next year the worst we get from them is a mild case of the flu!

So last week Kevin and Scotty couldn't see eachother for a couple of days while we got Scotty's rash all figured out. I really get the feeling some of the adults around Kevin and Scotty don't understand how important their relationship is to Kevin's healing. It strikes me as odd how we maybe able to understand how important our brothers and sisters are to us, but to understand, nuture and protect that relationship for our children seems like quite the different thing. By Friday of last week they were both verbalized how much they missed eachother and all day today Scotty kept telling the family who called, "I am staying with my big brother Kevin for a long time!"



A mom would needs a trip to some distant tropical island,
Rachel

PS There was talk today of Kevin going in for his last round of chemo this upcoming Saturday....so we will see!

8 years old

We celebrated Kevin's birthday today, since Monday is usually a very busy day at the hospital. Also, Mike and I both need to fly back tomorrow so we can be back to work on Tuesday. First of all Kevin felt pretty good. No vomitting or anything dramatic to speak of. After our GCSF and labs in the medicine room, we went back to the target house so I could give him his 1 hour redimed of vancomycen. He'll be on that for another week, 3 times a day. Next, Scotty, Mike, Kevin and I went to play Laser Tag. We had fun playing air hockey while waiting for our first game. The equipmet didn't fit well the first round, and was getting quite heavy for Kevin. He was actuallyget quit upset, and we both pretty much shut it down half way through. The guy who sets us up, said he could adjust his gear so it at least fit better. The second game Kevin was much more comfortable. However, his gun stopped working, and didn't get fixed by the ref until close to the end. All in all he had a good time, but he really didn't get a good round in because of the aforementioned problems. Still, Scotty had a really good time, and the course was really cool. You could go to a second level and could take sniper shots to those below. I stayed with Kevin and pretty much tried to cover him. He still had a good time, but was ready to go after the second game. His strength and stamina is definitely very low right now. Next we went to the apartment and had pizza and cake and ice cream. He didn't eat much but enjoyed celebrating. Opening the packages was very enjoyable for him. It was incredible how much we have to give to St. Jude. Kevin really felt a huge amount of pride that people donated so many toys in honor of his birthday. He also got plenty, including some gift cards. Thank you to those who gave toys and a gift card to him. It was completely unnecessary, but very much appreciated by us and Kevin. We're going to have a wagon full of toys to deliver, and I know a few people called or emailed me indicating there package will arrive a little later in the week. Rachel's going to get a picture of Kevin delivering the toys that we make sure makes it to eveybdoy. Kevin and I went left the apartment and I went and got him Mouse Trap with one of the Gift Cards. He's wanted that for a while, and we had fun playing it late into the night. Saturday night Kevin stayed with Rachel, and a friend of mine (Ali) from St. Jude and I went to watch the UFC pay per view event at Buffalo Wild Wings. It was nice to get out. Unfortunately they had sattelite trouble and the fight was never televised. We were disappointed, but had a good time and met some really nice people. And boy oh boy did we eat, and then we ate some more. A fellow UFC fan we met there insisted on picking up our tab, which was very kind. Monday will be Kevin's actual birthday, and I'll at least be able to spend a few hours with him. He had a tough year, and we hope and pray that 8 years old will bring more laughs and more normalcy. It will be interesting to see how his strength returns, because right now I don't think he'll be ready for recess, and I'm a little worried about his appetite, but I suppose this will slowly return. If he doesn't want to go back to school right way, we certainly won't force him. He says he does, but we'll see how it plays out as we see how quickly he recovers. The school is 100% behind whatever he wants and needs to do. I've been reading up quite a bit about returning to school after cancer treatment, and I think Rachel and I or at least Mike and I if Rachel's here, need to meet with the Principal and his teacher. Even though they're expressing support, we may need to sit down with them just so there are no surpises. I think the kids and community as a whole will be rooting Kevin on and will be very supportive. He still gets cards on a regular basis both from all 3 of his teachers he's had. Everything will all work out, especially as his appetite and strength return. Overall he's lost about 6 or 7 pounds, so we'll do what we can to get him back. Thanks again for everybody remembering Kevin on his birthday. He loves that he's not forgotten back home.

Take Care,

Eric

Target House Backpack give-away

As I wrote yesterday Kevin was released from being an inpatient. He was let out just in time to participate in the Target Back to School Party. Target had almost all of the common area rooms filled with school materials, the first room by the main lobby being completely filled with brand new backpacks. Scotty and Mike were with us as well. Both boys chose Incredible Hulk backpacks. No surprise there. Kevin has loved the Hulk since he was 3 or 4 years old. After they picked their backpacks up we journied to the various rooms in target house I and II that had materials such as pencils, markers, paper, notebooks, folders, erasers, blue, pencil cases, colored pencils, notecards, multiplication and division flash-cards, book covers, and more. It was an incredible experience for all of the children. Not only is it incredibly generous, but it gets the patients back in the normal every day frame of mind. You could see the wheels turning when Kevin made his decisions as to which backpack was cool, or which folders weren't babyish. He's very excited to be nearing the end so he can go back to school. Lucky for us, Kevin's school doesn't start until September 3rd; I know I talked to some parents who's school already started where they live. Kevin should only miss 2 to 4 weeks of school, and we'll make sure to get his teacher hooked up with the teacher here at the Hospital. Kevin's been keeping sharp with 1/2 hour of schooling 5 days a week. His writting looks pretty good. We'll worry about where he's at when the time comes. For now we just want him to be happy and back with his friends. The packages have been coming in for Kevin's birthday. Kevin will be so pleased in delivering the stuff to the Treasure box at St. Jude. I can't stress how important it is the first few weeks, for the children to have something to look forward to at the end of a scary procedure. It was especially rewarding after MRI's, sedation, and radiation. Whoever sent a package, you'll know the smile on the childrens faces when digging through the treasure chest is priceless.

Well we're off to the hospital so he can get some GCSF to keep his counts up. He'll also get more blood drawn. He'll probably need another Blood transfusion either today or tomorrow, as his HGB was pretty low yesterday. He's feeling well though, and even ate a bowl of cereal this morning for breakfast. In fact he woke up befoe I did, turned on the t.v. and purposely let me sleep another hour.

Take Care,

Eric

We R OUT

Counts finally came back up this morning. His ANC is at 600, which is above the 500 required to leave the BMT inpatient floor. Neither Kevin or I was interested in spending one more night there. He's feeling well today. We had a busy (and early) morning. He had his EKG and Echocardio test first thing. Next we had his audiology test. So far, Kevin's not suffered any hearing loss. We hope this continues, as Kevin's high dose chemo drug, Cisplatin can cause hearing loss, especially in the high frequencies. He only has one more round, so we'll hope and pray for continued good hearing. He's getting excited about his birthday. We're relieved he won't have to spend it inpatient. The nurses are proud of him, as he's told all of them he's donating presents (except for mom & dad's and a select couple of others) to St. Jude. He wants to deliver them himself to the different clinics (B&D) and recovery. That's about all that's going on here.

Take Care,

Eric

.......and still counts are 0

Kevin's doing fine. I keep getting text and emails worrying about his counts not going up. As I said in prior posts, each subsequent round of chemo causes his counts to take longer to recover. Also, instead of a stem cell transplant, Kevin got the full bone marrow transplant this round. This alone takes up to 4 days longer then stem cells. He's fine. His infection is long gone, but they're still giving him Vancomycen. He even had a magician come to his room to give him a personal performance. Kevin liked it so much, that he came back the next day to show him some more tricks, and even the secret behind a few of them. He's tired of the hospital but so am I. Overall his spirits are pretty good considering he's been inpatient 12 of the last 17 days. We missed rounds this morning, as the doctors let us sleep. They'll come back probably later in the morning or early afternoon. We got the printout from the nurse though showing his counts still haven't recovered to the point they need to be. His ANC is at 100 and it still needs to be at 500. As long as we're out of here by the weekend, Kevin will be ok. His birthday is on Monday, so he's getting excited about that.

Take Care,

Eric

still here

counts are still 0. Everything else is fine. He's eating, he's eating ice cream, but he's eating. He's also very active, instead of just laying in bed doing nothing. He's either interested in watching a movie, a board game, the Wii or reading. All of this is good. I've pretty much resigned myself to the fact that I'm not going home this week. At this point the earliest Kevin would leave the hospital is Thursday morning, and it wouldn't make much sense for me to fly home Thursday, work Friday the fly back Saturday or Sunday for Kevin's birthday on Monday. Obviously I wouldn't miss Kevin's birthday for the world. Thank god for on line banking. Also thank you once again to Susan and Ed Clancy who are taking care of the odds and ends at my house when I'm gone. This includes feeding the fish, both aquariums (100 gallon and 20 gallon in Kevin's room). Also, the lap-top Ron & Sue Daiza got me for my 10 year work anniversary not only allows me to keep up with work, but it also provides me with something to do when Kevin's sleeping. I had a chance to see one of our friends from St. Jude, Heather walking around today at the Target House. She's had some rough times including a trip to ICU, so it warmed my heart to see her walking around with a smile on her face. I hope everybody back home is well.

Take Care,

Eric

Monday

As Eric mentioned when Dr. Hale told us what Kevin had, and how surprised he was Kevin wasn't in ICU, we are ever thankful for those praying for him and for God sparing him so far.

Today Kevin and Scotty spent most of the afternoon in the play room playing with Lego's or playing the game Life. Our friend Pam is here to help me this week and she was a huge help!! I would just get Jake almost to sleep and Kevin would have to go to the bathroom, she jumped right into action and was a huge help. She is really good with the kids and I can see Scotty taking a liking to her. Scotty and Pam were going to go to Target House for the camp they have going on in the evening this week but Kevin really wanted Scotty to stay and Scotty didn't want to go if Kevin couldn't go. I am so glad to see them supporting each other through this.

Rachel

Pretty lucky

Dr. Hale came in around noon today and gave Rachel and I more specifics on the type of infection Kevin has/had. It seems as I mentioned earlier that it's more commonly found with leukemia patients, and it's also a very aggressive infection when not treated quickly. Lucky for Kevin the infection was treated quickly and has not shown up on the cultures since Friday. Apparantly this type of infection is one that can be quite dangerous, sometimes traveling to the heart, lungs and brain. We're thankful St. Jude is diligant and admits kids immediately with a fever. His first round of chemo when he had a fever, and we ended up staying a few nights in the hospital with no infection. Having had this infection, that now seems like time very well spent. Dr. Hale stressed that he should be out of the woods at this point, and as soon as his counts are up he can leave. We're very thankful that the infection caused Kevin little or no harm. Although he's been admitted 3 times between chemo rounds, Kevin's been very lucky as far as side effects go. Outside of the nausea, lack of appetite and lack of energy, thus far he's bypassed the many more severe chemotherapy side effects. He even woke up ealier then I did this morning, and has played video games, had school, and went to physical therapy. we hope and pray this last upcoming round spares him of any complications. He's in a pleasant mood, and the current time of 8 p.m. he's not tired, even after arising this morning at 8 a.m. Hopefully we'll get good news tomorrow morning with his counts.

Take Care,

Eric

Darn Counts

Kevin's feeling well, but his counts are still not rebounding. In fact he had to get yet another blood transfusion this morning because his hemoglobin dipped too low. His ANC is somehow back to 0 from 100 (not much difference). We had a fellow instead of Dr. Hale his morning, so I really didn't get the information I was looking for. He's supposed to be in later today. I'll make sure Rachel talks to him. I was hoping for better news this morning, but the important thing is Kevin's feeling well and his counts not cooperating is a minor bump in the road.

Take Care,

Eric

Turning the corner

I just met with Dr. Hale and two other Doctors who were walking rounds with him this morning. He indicated Kevin seems to have turned the corner. The infection he has grew very quickly when cultures were first taken, but since the Vancomycen has been given, has not shown up. It's a different infection then last time, actually one he said that's more commonly seen in Luekemia patients. This is an infection that often is accompanied by mouth sores and other more typical chemo oriented symptoms. Because he was given the antibiotics so quickly his symptoms were minimized. Also, the kids who are on leukemia protocols often have more severe side effects when they get sick because their bone marrow transplants are not autologous, but rather allogenic, meaning they get donors bone marrow not their own harvested marrow. At any rate, Dr. Hale said his counts came up a little bit (100) so if he starts to see a trend on Monday then perhaps he can be released on Tuesday, but Wednesday is also a possbility. His temperature has been consistantly below 99, so he's definitely responding well to the antibiotics. As I mentioned yesterday, because he's further along in treatment, his counts are taking a bit longer to come back up. Also because he fad a full Bone marrow transplant instead of just stem cells, that takes a couple of days longer. At this point Kevin should be ok in terms of further symptoms/side effects from the infection. We just need his immune system back so they can let us out.

Take care,

Eric

Feeling a little better

I arrived in Memphis around 7 p.m. this evening, and am currently writting this entry from Kevin's hospital room. He seems to be doing ok. His fever is down, and he's not vomitting or the other. His counts are still at 0, but Dr. Hale warned us with each passing treatment his counts will take a longer time to recover. He'll be in the hospital until he doesn't have a fever and his counts are back up. He seems in good spirits, and is currently watch Spy Kids 1 movie.

I've had a pretty long day today. I woke up at 6 a.m. to stretch and get ready for the Advokate 5k. The race was a rousing success, with over 300 runners. The procedes went directly to St. Jude's brain tumor research. I met with the parents who organized the race, and they were wonderful people. Despite losing their daughter over 18 months ago, they still are fighting very hard for the cause and cure of brain tumors, specificaly in their daughters case Multi form Glioma. They did a spectacular job organizing the race. I usually start near the front, and when I turned around to see all the people before the start, it was surreal. There were 164 5k runners and close to 150 10k runners. Colleen the mother of the little girl the race honors, spoke just prior to the start of the race, and I almost lost it. My personal permformance was not good, as the hills proved to be a worthy opponent. I got 9th place but died so hard on the largest hill, that I actually had to stop for 30 seconds to catch my breath. Personal goals were secondary this race though, and even though Kevin went inpatient I didn't want to miss it. I went home for a few hours then off to the airport. I'm not sure how long I'll be here this time. Hopefully Kevin recovers quickly. We'll continue to keep everybody posted.

Take Care,

Eric

The baby in the room next to Kevin's

Sulley has been in the BMT (Bone Marrow Transplant floor) I think every time we have been inpatient. I believe his mom said he has been there 40+ days. He is 15 months yesterday. This time Kevin's room is right next to his. Yesterday there was LOTS of family (more than the allowed amount) in Sulley's room. There were lots of people who came out crying. Without asking, it was apparent what was going on. Last week Sulley was out in his car that his parents push around while I was walking Jake around in his wagon. Sulley had fallen asleep at the wheel. Sulley has ALL and AML (two different type of leukemia if I understand correctly). His prognosis was never good his mom said yesterday when I spoke to her, but she always had hope. Now she and her husband, Sulley's father, has to let go and give him back to God, apparently He needs another angel.

There is another family who got the bad news that their daughters cancer has spread last week and they are in the planning stages for end of life treatment.

There are times when I walk the halls of St. Jude and can feel the angels around us, some are human and come in the form a parent supporting another parent, some come in the form of nurses who throw their protective barrier to the side and become a friend even though it is not recommended, some angels are the friends & family that let us know we are not forgotten. And some you can't see you can just feel; something beyond this world trying to lift up those of us here when life seems hard. To me it is a reminder that this is not the end, that I am adult in this world, but still a child in God's world. My head can understand this yet my heart breaks for the parents and siblings losing apart of family so young, so with bodies so little, given little time on this earth.

Rachel

movie time

"When we are done with cancer"

Scotty wants to take karate with his brother Kevin "when we are done with cancer". Or so he announced today in Kevin's hospital room. Just like this is a temporary set back. We will get back to normal soon. I love his nonchalant matter of factness. Scotty has all sorts of crazy stories these days. He is really an interesting person.

It looks like Kevin has a meaner type of staph infection this time. We aren't sure exactly what it is but maybe tomorrow we will know.

Mike is staying the night tonight with him. Kevin's spirits lifted tonight when Mike and Scotty came in. Kevin has been short tempered with me this week. Then I realized tonight he hasn't gotten to spend much time with Scotty this week because we stayed in separate places. I will try next week to make sure they spend more time together. It makes a big difference with Kevin and getting better.

I am tired. It was a long stressful week. Kevin has had 2 blood transfusions this week and one infusion of platelets he had an allergic reaction to. Luckily he just broke out in hives and once I realized why he was itching some benadryel took care of it pretty fast.

I was happy to see Mike today. Laura and the Zubes were a big help this week. I really appreciate all of the help we have gotten. I can't do this alone with all 3 kids. They blessed me with a moment of getting to go to Target by myself. I don't think I have be anywhere alone since getting my hair cut weeks ago.

Rachel

Fever

Rachel called me late tonight and told me Kevin's been admitted to the BMT floor. Unfortunately for the 3rd straight round Kevin has a fever before his counts came back up. I don't know details, but I guess he's pretty out of it. I hope and pray it's not a bad infection. I still don't know if I'm going to fly out tomorrow or run the race Saturday morning---kind of a moral dilema, as the race benefits brain tumor research at St. Jude. She's assured me he's okay, but he'll be in the hospital until his ANC is above 500. I'll fly out and join my hospital roomate, either Friday or Saturday. My sister is spending the night with him tonight. I'll make sure to keep everybody posted as I hear more.

Take Care,

Eric

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

Waiting for Counts to Approve

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

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

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

Mike

Cancer Rates in Oakland County

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

Symptoms & Facts of Childhood Cancer

Almost Saturday morning

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

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

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

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

Officially outpatientOne

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

Take Care,

Eric

Right on Schedule

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

Good night all

Eric

chemo done this cycle

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

Take Care,

Eric

Pictures from when Grandma and Grandpa come to help

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

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

Lots of Sleep

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

Take Care,

Eric

Just for Daddy

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

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

Hopefully tomorrow is a decent day.

Take Care

Eric

First day (-4)

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

Take Care,

Eric

First night

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

Everybody Take Care,

Eric

1 more day until chemo starts

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

We really appreciate all of the prayers and comments!

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

Rachel

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

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

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

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

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

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

Good night.
Rachel

Another Fever

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

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

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


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

Cancer sucks.

Rachel