Day +2 GCSF

Today was another great day for Kevin. He once again was successful in eating without getting ill. I don't want to mislead and paint a picture of him eating like the rest of us, but for being an inpatient recently administered chemo, stem cell infusion, and other medicines to protect his body he's doing wonderful. The doctor and nurses all agree that this first cycle has gone very smoothly thus far. They even lowered his TPN to 20 hours a day since his body is processing it well and he's eating on top of it. Rachel had her TPN experience today and did very well. She's nervous about it, but after a couple more times with assistance I'm confident she'll have no problems at all. Kevin and I go back to the Target House tomorrow. It will be nice for both of us. Having seen his vast improvement the last several days I'm quite optimistic about his return. He'll not leave the apartment much when his counts are down, but he has plenty to do, including school, wii, and movies. We have an early morning so I'll sign off for now.

Eric

What in the world is TPN?

After reading Eric's entry about Day +1 (GCSF) you are probably wondering what is TPN.

TPN (Total Parenteral Nutrition) is kind of what the rest of the world would consider a feeding tube. Kevin is being supplemented through a tube that is connected to his hickman line they put in his chest last week. This is also how he received his chemo drugs with the exception of the vincristine which is a tiny pill this past week.

What exactly is TPN?
TPN bypasses the normal way the body digests food in the stomach. It supplies the fuels the body needs directly into the blood stream through a central IV line. The body needs 3 kinds of fuel — carbohydrates, protein, and fat.
• Carbohydrates provide calories to the body. They supply most of the energy or fuel the body needs to run. The main energy source in TPN is dextrose (sugar).
• Protein is made up of amino acids, which are the “building blocks” of life. The body uses protein to build muscle, repair tissue, fight infections, and carry nutrients through the body.
• Fat or Lipids are another source of calories and energy. Fat also helps carry vitamins in the blood stream. Fat supports and protects some of your organs and insulates your body against heat loss. Fat is white in color.
TPN also contains other nutrients, such as vitamins and minerals, electrolytes, and water.
• Vitamins added to the TPN provide the needed daily amounts of vitamins A, B, C, D, E, and K. It is the vitamins that are added to the TPN mixture that turns it yellow. The body also needs minerals. These minerals are zinc, copper, chromium, manganese, and selenium. The vitamins and minerals in the TPN are needed for the body’s growth and good health.
• Electrolytes are important for bone, nerve, organ, and muscle function. Electrolytes, such as calcium, potassium, phosphorus, magnesium, sodium, chloride, and acetate, are also added to the TPN mixture.
• Water is a vital part of TPN. It prevents patients from becoming dehydrated (too little fluid). The amount of water in the TPN is based on your child’s height and weight.
Staff members will use blood tests to check the balance of all the TPN parts. The most critical of these tests is the chemistry test that your child will have during each clinic visit. The TPN mixture may be changed based on your child’s needs and the blood test results.

Possible TPN–related problems
Some problems might occur when your child is on TPN. Sometimes the problem can be fixed by changing the levels of protein, carbohydrates, or electrolytes in the TPN mixture. The clinical pharmacist and the nutritionist will review all of your child’s blood tests daily and will correct any imbalances. Hyperglycemia, or too much blood sugar, is one of the problems that can occur while your child is receiving TPN. This imbalance does not happen often, but you should be aware of it.
Hyperglycemia (High blood sugar)
Hyperglycemia is a higher than normal level of sugar in the blood.
• It can happen when TPN is given too fast or if the body cannot accept the sugar. Sometimes having an infection or taking a medicine such as a steroid will make the body unable to use large amounts of sugar.
• Your child may have a headache or feel thirsty, weak, or sick to her stomach.
• The pharmacist and nutritionist will follow your child’s daily blood tests very closely. One of those tests checks the sugar level in the blood.


And yes, I am completely freaked out about doing this by myself with a screaming 8 month old in the back ground on a daily basis. I feel like I should have gone to nursing school. I don't remotely feel qualified for all of this.

Please pray that Kevin stays healthy through all of this.

Rachel

Day +1 (GCSF)

Kevin had a wonderful day today. No vomiting, a good physical therapy session, and even a little bit of an appetite. Today is considered day +1 because it's the first day after the stem cell infusion. He was given his GCSF today which boost his stem cells from the damage done by the chemo. His ANC is the most important number. Right now it's at 1,100 and will eventually go down to zero (probably within a week). The shots he gets the next couple of days help this number go back up. He'll be at absolute zero from what I understand, for a few days before his counts come back up. He'll be home at the Target House but will have to wear a mask when outside our apartment. If he even gets a temperature he'll need to go back to the hospital until his ANC count is at least 500. Not sure how I got off on my medical tangent, but my point of today is Kevin had a great day. He played Wii with Mike and Scotty. He even ate ravioli twice for Mike this evening. I think we're going to lay off dairy for a bit, because the breakfast cereal thing is clearly not working out. Tonight we watched Return of the Jedi. He loved the movie even though he's seen it before. I think tomorrow we'll watch Phantom Menace. He even had some popcorn and doritos. He was his old silly self, making fun of me and the nurse as she was teaching me how to administer his TPN. She actually made me do everything myself tonight, from injecting the vitamins in the bag, to priming it, connecting it, and setting up the pump. It was a bit overwhelming, but now that I did it once I think it would be easier next time. He was a little ham though. He's back to his giggling silly self, at least for tonight. We're all just praying he doesn't get an infection when he leaves the hospital.

Take care,
Eric

Can you Spare $1 in Honor of Kevin’s Battle with Cancer?

Please note: I know many of you have spared more than a dollar to help us manage all of the costs associated with Kevin's cancer treatment. Please know we really appreciate it and it is certainly helping us with these mounting costs of travel and living here in Memphis while we try to save Kevin.

Kevin’s school Glengary has this great program they call the Mileage Club. At recess on Fridays the kids can walk around the school and earn charms to go on a chain for each set of 20 laps they do. Kevin LOVES the Mileage Club and was really upset he was going to be missing it the rest of the school year. Kevin really enjoys going to Glenagry and I think the Mileage Club is really special because at Kevin’s old school he always seemed to be in trouble at recess a lot. I think the Mileage Club has helped Kevin develop friendships in a healthy way, with a bit of healthy competition where the kids encourage each other. Plus I think it helped minimize those few awkward days when his close friends weren’t around to play with.

I recently learned that the Glengary PTA is trying to raise funds to put a track in and they are a long ways from their goal. Friday May 30^th Glengary is hosting their first Fun Run and they are asking the kids to get pledges for their walk. Since Kevin cannot participate I am asking all of our friends, family, our prayer people, basically anyone who is willing to send a $1 in Kevin’s honor to his school. The Glengary PTA is a non profit and donations can be tax deductible.

Here is where to send a $1:

Glengary Elementary PTA
ATTN: Denise Bither
3070 Woodbury St
Commerce Twp, MI 48390

RE: In Honor of Kevin

If you write a check please put in the memo it is for the new track. But feel free just to stick a dollar in an envelope and mail it off.

You all have been so wonderful to us with all of your care and support. I know it would be a long shot, but it would be so great if they were able to build that track by next fall. Kevin’s equilibrium is currently a little out of whack from the chemo and I am going to use the Mileage Club as an incentive for him to work on overcoming this small side effect.

God Bless,

Rachel

Day 0.....Stem Cell Infusion

Kevin enjoyed his day of rest yesterday. Mike and Rachel said he didn't sleep much during the day, but was alert, talkative, and in good spirits. He's still not able to keep food down for more then an hour or two, but that's very typical. This too will eventually work it's self out. I was able to watch the first half of the Pistons game at the Target House, giving Mike and Kevin some additional quality time. I arrived around 9 p.m. and they were playing the Wii, so I went next door to the parent room and finished watching the Pistons game. Once Mike left Kevin really didn't stay up for much longer, but he really needed his sleep. Both of us were worn out to say the least, from 2 nights in a row of getting up every 2 hours for him to empty his bladder. I think I mentioned this before, but the medicine he was taking on those two days leaves his bladder vulnerable to hemmoraging. As long as it's not too full for a long period of time, and the output is as much or more then the input there's typically not problems. Kevin's labs have looked good, and still nothing has grown on the blood cultures taken 2 nights ago, meaning no infection. Kevin and I enjoyed a long night of uninterupted sleep last night. We "slept in" until 8:30 this morning and both of us woke up in much better moods. He had physical therapy around 10:15. This was much different then the p.t. he took before chemo. This was more to get him out of bed and was a little more fun and less to challenge him. The Therapist said his balance is definitely off right now, which is a combination of the chemo and the fact that he hasn't been able to fully digest any nutrition. At 11:15 a.m. he started the stem cell infusion. This was quite interesting to watch. It really didn't take very long--about 15 minutes or so. The preservative used to freeze the bone marrow had a pungent odor of cream corn. He experienced a little bit of nausea but it wasn't too bad. He took a nap shortly there-after and I left him around 11:30 with Rachel (she arrived in time to be there for him for the infusion as well). Having spoken to her an hour ago, it seems he napped for quite some time, but has felt pretty good overall. He starts TPN tonight, which is critical nutrition that he's lacking. I don't even want to say how much weight he's lost. They'll monitor how his body takes the TPN until Friday then discharge Kevin from the hospital until next cycle. I've already booked my flight for Sunday. It's been almost 3 weeks and I have to go home and take care of several things. My overall reaction to Kevin's first chemo cycle is this: The first day was even worse then expected. It's hard to prepare somebod for how sick, and how quickly somebody becomes very ill in respose to the chemo and medicine. Other then that, Kevin's handled things outstading! Don't get me wrong, he can't eat, but he still does knowing he needs to try. He was a trooper during the every 2 hour bladder emptying sessions for 2 nights in a row (more so then I, as I crashed for 5 hours yesterday afternoon), and his overall attitude has been a delight to see. He enjoys things, he's not depressed, and he understands why he's doing this. He knows the tumor is gone, and MRI's are clean, but that chemo and radiation give him the best chance for the cancer to never come back.

I'll see many of you soon!

Eric

Nutrition and Cancer Prevention

I thought this was important to share. Hopefully all of you are taking care of yourselves too and getting your kids to eat healthy. Below is from the St. Jude website.

Nutrition and Cancer Prevention
Diet plays an important role in preventing adult cancer. By decreasing the number of cancer-associated food products and increasing the amount of cancer-preventing foods you eat, you may reduce your risk of some types of adult tumors.
Most studies about diet and cancer prevention involve adults who are exposed to dietary factors over long periods of time. The real benefit for a child may be in developing habits that will reduce the risk of cancer later in life. Here are some great sites with information on nutrition and the prevention of cancer:
American Cancer Society: Guidelines for Eating Well & Being Active
United States Department of Agriculture 2005 Dietary Guidelines for Americans
National Cancer Institute
American Institute for Cancer Research

Rachel

day-1 Rest Day

We had an up and down night, but his temperature came down around 3:00 or 4:00 a.m. and it's continued to stay down without the aid of Tylenol. The Doctor this morning looked him over pretty good, and said it's not abnormal to have a slight fever without infection during chemo. He'll know more after blood culture anaylysis. He woke up feeling really good. He attempted to eat breakfast but that didn't work out so well. He's pretty tired, but overall feeling better then last night. It's about 11 a.m. and we're watching the Disney Channel. The doctor told us we're still on pace for him getting out on Friday, which means I'll probably take a weekend flight back home. Rachel should be coming in soon...Hopefully I'll be able to take a nap to supplement the 3 hours I had last night.

Eric

Day -2 completed with speedbump

Kevin had a good morning and from what I hear from Mike a good afternoon and evening as well. I came in around 8 p.m. tonight and Kevin did seem tired, which of course is no surprise. He started to toss and turn in his sleep and moan a little. The nurse came in for her normal rounds and discovered he has a 100 degree temp. She uncovered him a bit and came back an hour later, only to find it was a little over 101 degrees. She paged the doctor who came in within 10 minutes. She sent down orders for Vancomucin, which I'm told is a broad reaching antibiotic. The doctor also ordered blood cultures. All in all she didn't seem overly alarmed. The nurse did say it's probably an infection and more then likely it's in his line. This was an unoffical comment, but was information at least. She said if it's in the line it's not too big of a deal as the antibiotic goes directly to the source. He'll get the antibiotic every 8 hours until futher notice. They also gave him some tylenol to break the fever. It's not super high, but I guess I'm a little surprised as his ANC counts are still quite high, meaning his ummune system isn't wide open like it will be when they reach zero. I think that's why the nurse commented about it being in his line. It's being used all the time, and it's a common source of infection even when counts are up. He's seemed to stop stirring. Luckily tomorrow is considered a rest day on his protocol---day -1. which leads up to his stem cell infusion on day 0 on Tuesday. In a perfect situation he'd leave the hospital on Wednesday, but we already knew he was getting TPN, which is a supplemental nourishment line. They start that on day 0 and need to take 2 or 3 days to make sure his body and organs are metabolizing everything okay without unnecessary damage. Kevin and I have now been here almost 2 weeks, as we arrived on Tuesday the 12th. If everything goes well hopefully Kevin will be out of the hospital by Saturday. His attitude after day 1 has been good. He really does know what's going on, and has been incredibly brave. I've never been more proud of him.

Take care,

Eric

Poisonous Spiders in Tennessee

Anyone coming to Tennessee this summer to help please note this. Below is an exact copy from the Tennessee Poison Center :

Poisonous Spiders in Tennessee:

Few things cause as much fear and anxiety in people as the thought of poisonous spiders. Tennessee is home to many species of spiders; however, only two are poisonous - the black widow and the brown recluse. Both of these species are found in every Tennessee county.

Below are some useful tips for keeping spiders at bay:

· Store clothing in sealed plastic bags or storage boxes

· Store shoes in plastic shoe boxes

· Shake clothing and shoes before wearing

· Move beds away from walls or curtains

· Remove bed skirts from box springs

· Do not use bedspreads that touch or come close to the floor

· Inspect bedding before climbing into bed

· Consider keeping closet doors open to let in light

· Move firewood away from the home, elevate it off the ground and cover it with plastic

· Keep all vegetation and mulch at least 18 inches from the foundation of your home

· Trim branches and shrubs away from the home to prevent spiders from using them as a path into the home

· Seal all cracks and crevices where spiders may enter the home.

If you suspect that you have a spider bite, contact your primary care physician.

The above information is provided by The University of Tennessee Agricultural Extension Service. For more information about spiders and other subjects, visit the Agricultural Extension Service Website:

http://www.utextension.edu

Brown Recluse Spider

Description:

The brown recluse is a shy, retiring spider that does not attack people and usually only bites in response to being injured. This is quite the opposite of what most people think! Most reported bites occur when putting on clothing in which the spider is hiding or rolling on a spider in bed. Most people living in proximity to the spider will never see it, nor be bitten by it.

The brown recluse is a medium-sized spider. The legs span an area roughly the size of a quarter to a half-dollar. The color of the brown recluse ranges from a light yellowish brown to a dark reddish or chocolate brown, but most are light to medium brown. The second pair of legs is always longer than the remaining pair in both the male and female. Three pairs of eyes are arranged in a semicircle. Since most other spiders have eight eyes, this feature alone can eliminate many specimens suspected of being a brown recluse spider.

The most distinguishing characteristic is the violin-shaped marking on the top of the body directly above the legs. The violin-shaped marking is usually much darker than the surrounding areas and may appear lined. Since some other species of spider have a violin-shaped marking, the best identification feature for the brown recluse is a semicircular arrangement of the three pairs of eyes. Contact your county Extension agent to identify a suspected brown recluse spider.

Habitat:

Brown recluse spiders prefer sheltered areas with low moisture levels. In homes, they tend to prefer darkened storage areas in closets, garages, basements, attics and cupboards. Since most brown recluse spiders hibernate in the winter (except for those that live indoors), most bites occur between March and October when humans accidentally disturb their habitat: closets, out-buildings or woodpiles.

For additional information regarding the brown recluse spider, visit this link on The University of Tennessee Agricultural Extension Service website :

http://www.utextension.utk.edu/publications/pbfiles/pb1191.pdf

For a photo and description of the brown recluse spider, visit this link:

http://www.mc.vanderbilt.edu/root/pdfs/poison/Brown_recluse_spider.pdf


Black Widow Spider

Description:

Black widow spiders are very numerous in nearly all parts of the U.S., but cases of reported bites are not common. For the most part, black widows live peacefully in close proximity to humans with little contact. Both the northern and southern black widows are found in Tennessee, with the southern species being the most common. The black widow appears shiny and hairless to the naked eye. The body ranges from a deep glossy black to an occasional dark brown to a reddish brown. The underside of the abdomen has a distinct red or orange hourglass shape. In immature spiders, the color can vary and the hourglass may be white or missing.

The body of the female adult black widow spider can reach 1 ½ inches with the legs fully extended. Black widow spiders have eight eyes arranged in two rows of four. The males are generally considered harmless and are usually about half the size of females with yellow or red spots or bands on the back or sides.

Habitat:

The black widows prefer closed, dark places such as water meter compartments and crawl spaces, so barriers constructed to inhibit entrance to these areas are of value. Common places where black widow spiders may be found are firewood piles, under boards and furniture, inside boxes, behind and under debris, sheds, barns, well houses and root cellars.

For additional information regarding the black widow spider, visit this link on The University of Tennessee Agricultural Extension Service website :

http://www.utextension.utk.edu/publications/pbfiles/PB1193.pdf

For a photo and description of the black widow spider, visit this link:

http://www.mc.vanderbilt.edu/root/pdfs/poison/Black_widow_spider.pdf

Day -3 (second day) chemo continued

It's about 9:40 p.m. and Kevin is peacefully sleeping. Accross the board, with Mike, Rachel and my time with Kevin we've all seen a dramatic improvement from yesterday. He didn't have a single epsisode of vomiting today. As Rachel said he was playfull and even ate well. We hope and pray tomorrow is similar. Tomorrow is actually the exact same chemo regiment as today, so we'll cross our fingers it goes as well. Everybody told us the first day is miserable and they were right. I'm not going to assume the remaining days of this cycle will go as well, but I hope they lean closer towards today then yesterday---much closer. Yesterday is really a fog to Kevin. He had such bad nausea they had to medicate him pretty heavily to slow it down. The mouth care he's fighting though. In order to prevent sores and ulcers in his mouth and throat he needs to do a regiment of 2 different liquids...The first he swishes and spits, and it's pretty much like a salt and water combo, the second he needs to swish and swallow. Yesterday every time he tried to swallow it he became ill. Today he refuses to swallow the foul smelling and tasting yellowish liquid. I can't say I blame him.

Other then that our thoughts are with Heather as she fights an infection following her chemo, and Alina who begins her inpatient portion tomorrow.

I'm going to finish watching the Pistons lose.

Eric

Day -3, Second Day of Chemo...much better

Just a brief update Kevin is up and eating and even has his silly sense of humor back! Horray!!! I am waiting for the poop explosions I have heard happen today but he has to pee every two hours to make sure he doens't become toxic. The nurses are much better today, much more responsive to Kevin and helping us but that also might be because he isn't so sick....yet. I am afraid of jinking how good we have it at this moment. Eric just left from his night shift. He stayed to enjoy Kevins good mood. It is really a nice to have his spirits up.

Eric tells me that Kevin mentioned this morning," This isn't that bad, I don't feel stuck."

This is my update. Maybe Eric or Mike will give another one later.

Thank you everyone for the prayers, comments and letting us know you are supporting Kevin and us through this. It helps us make it through the tough moments.

Rachel

P.S. Here is a link to a TON of pictures a couple of movies taken this month.

Pictures of Life During Chemo

Here are some pictures of Kevin from yesterday. It turned out to be a very rough day for him. His body was working hard to get the toxins out as fast as they were going in. Mike unfortunately had to put him in pull ups last night because it was so bad. He ate pretty much nothing the whole day. He was very mad at me any time he was awake yesterday and I had a lot of trouble getting him to do mouth care. Hopefully he does better with Eric or Mike. I am worried about him alot.





Jake and Scotty hung out with Mike during the day yesterday and Mike got some really cute pictures of them playing. Scotty keeps asking where Kevin is and why can't he go see him. When Mike was at the hospital he was really confused about where, "daddy is sleeping". I think Scotty feels pretty lonely without Kevin around, Jake is a good distraction but it isn't the same because of the large age difference.





And this is what happens when Daddy is watching the kids.... ;-)

AM of Day -4 ; 1st chemo round

I finally get to use the computer!

We are almost 4 hours into Kevin's first round of chemo. He has 6 hours of the cisplatin through an IV and that started at 6am CT. He has had his first dosage of amifostine to which it has made him very sick and his blood pressure to suddenly drop dangerously low which is 'normal'. We did what they call flip him, put his head down and his legs up so that his blood went back to his heart. He will get another dosage of the amifostine at noon, so in just under 2 hours. I can't count how many times he has thrown up so far. I just feel horrible for him. As for me, doing this to him is heartbreaking. I think I have been really tough through most of this but I am just struggling with the fact that my seven year little boy has to be made so sick in order to save his life. It really isn't fair that he has to go through this. When Kevin pees we are suppose to wear gloves, especially me since I am still breastfeeding Jake, because what comes out of him is toxic. It is such a tragedy that we have to feed people who are struck with cancer these toxic drugs to kill the cancer. I am aware there are other methods out there and honestly the lack of statistics about the number of remissions and 5, 10 and 20 year survival rates scared me away from looking too deep into what is considered alternative cancer treatments but I am hopeful for the future. Being here in a place where they research this daily we get to hear about the hope that they are looking for better ways. Understanding and analyzing DNA more and more to understand how different people are affected by treatment. I heard recently that they are trying to make chemo drugs that won't get the kids so sick. That would be great. I really hope a 100 years from now, that the generations after us look back and have enough understanding to think we were really crazy for doing this to people. I hope soon for the sake of those who may be affected with this terrible disease that there is something better. But for now we are here and what Kevin is getting is better than it was 10 years ago so in that I will try to find my peace.

If you are praying for Kevin please pray that his internal organs are protects but especially his hearing, bladder, kidneys, mouth, nerves and brain are protected. That this treatment gets all of the cancer cells and doesn't cause a secondary cancer ever in him. Also that he doesn't get any fevers or infections over the next 5 months and that his ANC blood counts recover fast. Thank you so much for your prayers and support of Kevin and the rest of us as we navigate the storm of childhood cancer.

Today, from what we have heard from other parents, doctors and nurses this is suppose to be the worst day through this whole thing for him. Hopefully he is able to sleep through most of it.

Eric did night shift last night (he is still here in his PJ's) and I came in this morning and Mike will come later this afternoon and trade me Scotty and Jake to take my place then Eric will come back for the night shift again.

Kevin is the first patient to stay in room #10 on the second floor of the Chili Care Center. His room is a orangy bright yellow. I will take pictures later today and post them.

I have noticed Kevin's angry outburst were less once Scotty came. I think sometimes we as adults underestimate the importance of siblings to help a child get through this.

I hope it gets warm in Michigan for those who are there! I will try to send a little of this Memphis heat back home with Mike in a couple of weeks. It has been close to 90 degrees almost everyday this past week. I hear the summer spiders are just as bad as the heat around here. Does anyone know of any particular dangerous spiders around here we should we aware of. It was pointed out to me we are the same distance from the equator as Africa earlier this week.

Take Care!
Rachel

Inpatient

Kevin's 3 hours into his first night as an inpatient. Rachel, Kevin and I came here at 8 and were given the tour. One of the nurses is from Brighton, Michigan so Rachel and her had that in common. He's not real keen on being an inpatient again, but tomorrow's a new day. Chemo starts at 6:30 a.m. and coninues for hours. He may not even wake up when it begins. He's been sleeping since Rachel left around 9:45. I moved the couch close to him and will try to sleep here tonight. It's about a foot too short, but I don't want him freaking out if he wakes up in the middle of the night, when the nurses do vitals.


Nurses are coming in, so I'll close

Take Care,

Eric

Tomorrow's the day

Kevin and I are enjoying our last night together at the Target House before we go inpatient at St. Jude. We're about prepared as we're going to be. We've had consult after consult with trasnplant/chemo nurses, doctors, and nurse practicioners. We surprisingly have a fairly long day tomorrow, prior to admitance at 8 p.m. I think we may be at St. Jude's until 3 or so.

Today was a better day for Kevin as far as pain goes. He was very sore yesterday. He was still pretty bad at his noon appointment today, so the doctor actually ordered morphine and they administered that through his line. It really helped out, then we switched his pill form pain medicine for liquid, so he's taking it now. yesterday he refused to take the pill, and last time we crushed up a pill he became ill. All in all a better day. Kevin is incredibly brave, and not showing much nervousness in anticipation of him going inpatient tomorrow. He's just happy with his Hickman that he'll no longer experience the pain of the pokes.

I believe Mike comes in tomorrow, and we'll work in shifts at the hospital, with myself spending the nights.

Take Care,

Eric

Surgery completed

Kevin's surgery was completed almost 2 hours ago. We spoke to Dr. Shokat, and he indicated it went well overall. He did say because of the placement of his shunt, that they had to operate with exreme caution so as not to disrupt the shunt or leave it open to infection. He also said that Kevin's anatonomy was a little different which made he line placement a bit more challenging then anticipated. Overall though, the Hickman is in place and the surgery went off with no complications. I was a little nervous as Kevin became physically ill just before they put him under. This was not the ideal way to start surgery to say the least. They said it's actually fairly common, and they gave him medicine and waitted a few minutes longer before opening him up. When he woke up he was not happy. I can't blame him, as he's had to endure so much the last few months. He had a really dry cough immediately after, which they said was from the tube in his throat. The cough cleared up within 30 or 40 minutes with some water. He's very sore and went back to the Target House with Rachel, Scotty and Jake. I'm still at the hospital....I'm getting some work done, and am going to go to his 12:30 B clinic consult. The consults typically mean he patient doesn't need to be there. The nurse and surgeon said any appointments he's not present for will be understood. Kevin's very tired and I imagine is probably laying down near or with mom at the Target house. Seeing him come out of anastesia is not easy to say the least. He's always very upset, and just wants to go home. Today he was asking why, why, why repeatedly. I wish I had an answer for him.

Take care,

Eric

Surgery

Just want to leave a quick entry that Kevin's in surgery right now. The first portion is over, which was the bone marrow aspiration. The surgeon said that went smoothly. Dr. Shocket is performing the second half of the surgery, which consist of him taking out his internal port, then installing the double lumen for chemo. We spoke with both surgeons yesterday. The lumen procedure is a bit more complicated then they had hoped for, since they will be doing a complete new install instead of just changing up his current line. He didn't like the location of his prior port (nobody did) so instead of just doing some quick adjustments on he current line, they removing the entire line and doing a second insision on the right side of his chest to instal the Hickman. It's not too big of a deal, just a little more involved then we had hoped for. His brain tumor resection surgery by Dr. Sood at Childen's Hospital was a very successful surgery, and we're thankful. But the general surgeon who did his port.....well we're not thrilled, let's just say that.

We had the pleasure of waking up around 5:45 a.m. in order to be here by 6:30. As long as everything goes well it's a small inconvenience. Once his second procedure is done and he's out of the recovery room, either Rachel or I will update the blog.

Eric

Address updated

Please note I've updated Kevin's address. This is were he'll be staying through September (hopefully not beyond).

Eric

Getting ready for chemo

We've moved into the Target House, and all in all are pretty settled. It's pretty much a decent sized apartment with 2 bedrooms, a kitchen, a small family room, and of course a bathroom. We went shopping last night with our kroger card, and of course managed to more then double the $100 amount on the card. They don't supply basics like paper towels, soap, shampoo, dish detergent or laundry detergent, or other cleaning supplies....so future shopping trips won't be as expensive-hopefully. Prior to shopping Kevin and I saw a movie: Chronicles of Narnia Prince Caspian. We both enjoyed the movie very much. It's quite long, but was enterntaining throughout. The little mouse is hilarious. There was a significant amount of fighting, but the whole movie's based off a religous theme (although sublimimal), so I figure it balances out.

Kevin began his GCSF shots yesterday. Even though he has an active port, they have decided to administer the medicine through a shot in the shoulder. They believe this increases the chances of the stem cells rising. We went to the hospital 10 a.m. this morning for his second dose. It was odd being there on a weekend, but it got our day started early. Kevin has 3 more shots, Sunday through Tuesday. The hope is for Kevin to be able to have his stem cells harvested through a cathetar in the leg (I forget the technical term) instead of through the bone marrow in his hip. This is less painfull and the ideal part of his protocol. They have told us that this probably won't happen. For whatever reason, pretty much every medulloblastoma patient has not had a high enough stem cell count, even after the GCSF shots to take through a cathetar in the leg. His surgery for his hickman line is Tuesday. They will also either put a line in his leg or withdrawl bone marrow from his hip bone for stem cell infusions. They hope to take enough for all 4 phases. The stem cell infusion is critical for returning his immune system, so as to fight off infection during chemo. This allows Kevin to undergo high dose chemo for 4 months, as opposed to lower dose for 15 to 18 months. He will most definitely need supplemental nourishment because of his weight. He's at about 88% of his ideal weight, and they'd like him at 90% or above. The good news is he gained a half pound since he's been here. We've been eating very high fat/high calorie snacks in between 3 healthy meals a day. He's feeling very well, and has even responded with little side effects from the GCSF shots.

That's about it for today. I think we're going to do something outside today and enjoy the weather. He'll sit in front of the t.v. or Nintendo DS all day if I let him. Maybe we'll go to the zoo.

Take Care,

Eric

MRIs and BW's

I'll start off immediately with the good news. Kevin's MRI's for his spine and brain both came back clear of any tumors or visible cancerous cells. Every MRI is going to be tough for all of us, and it's going to be a part of our life for years to come, but it sure was good news.
*************The rest of this is not for the weak of stomach**************
On to a funny little story. I must add this is with Kevin's 100% approval. He's sitting next to me laughing as I type this in fact. At any rate, yesterday I was up in arms about his weight. I wanted to test out Kevin eating past his comfort zone, or his I'm full zone. This was done with full support of doctors and nurses. My experiment started off well. We went to McDonalds where I enjoyed 10 chicken McNuggets, and Kevin proceded to eat all 6 of his chicken nuggets as well as a chocalte shake.........I should have left well enough alone. Three hours later we went to Buffalo Wild Wings (BW's). Kevin was pretty full but was a trooper. I told him to order whatever he wanted on the menu. Kevin chose mini corn dogs. He started off well enough, but half way through he said in no uncertain terms "daddy if I eat any more I'm gonna throw up". .......I should have listened!!!!!!!!!!! Two or three bites later Kevin blew chunks all over the restaurant; and I mean all over!! This was not 7 year old little bit of nasuea, this was 300 lb man getting violently ill type vomiting. I was terrified, but also a little impressed. He started at the table and continued to form a pathway all the way to the bathroom.....oh yes, Kevin just reminded me he "threw up in the bathroom too, but made it to the toilet". I ran terrified after Kevin to the bathroom and proceded to clean him up....there was a lot to clean up...a lot! After about 10 minutes or so of soaking his clothes and a minature sponge bath, we exited he restroom. They had a crew of people working on his works. I was embarassed to say the least.....Kevin was proud. (he's giggling histerically right now). I walked up to the manager who was cleaning it up, and offered my sincere apologies and tried to slip him $20 for his troubles. He was very nice and said he has kids of his own, and didn't accept the money........so the moral of the story is when Kevin says he can't eat any more or he'll throw up, do not feed him more. My experiment is over, Kevin will not be forced to eat past the point of being full. The nutrutionalist and nurses applauded my efforts, but said with his stomach being shrunk so much, we need to keep feeding him snacks and high fat dense calorie shakes and treats. We'll offer healthy meal food, so he at least makes an effort to get some good nutrition. But milk shakes and pudding here we come. Kevin says "everybody was looking at him and was embarassed, but that he's proud of how much he did". Sorry for the gross out story, but Kevin and I are happy our day is over and in fun moods.

Take Care,

Eric