Thursday, May 29, 2008
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.
Tuesday, May 27, 2008
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 30th 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
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.
I'll see many of you soon!
Monday, May 26, 2008
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
Sunday, May 25, 2008
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:
Brown Recluse Spider
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.
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 :
For a photo and description of the brown recluse spider, visit this link:
Black Widow Spider
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.
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 :
For a photo and description of the black widow spider, visit this link:
Saturday, May 24, 2008
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 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.
P.S. Here is a link to a TON of pictures a couple of movies taken this month.
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.... ;-)
Friday, May 23, 2008
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.
Thursday, May 22, 2008
Nurses are coming in, so I'll close
Wednesday, May 21, 2008
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.
Tuesday, May 20, 2008
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.
Saturday, May 17, 2008
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.
Thursday, May 15, 2008
*************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.
Wednesday, May 14, 2008
They packed an incredible amount of appointments into our schedule the next few days. Today has been jam packed with appointments. They're taking several test to make certain his body is ready to begin chemotherapy. Tomorrow is MRI day, and spinal tap. Patient services actually was able to get us an appointment to get our orientation and move in to the Target House today, but our schedule was so full we couldn't fit it in. The plan is for us to move in around 3:00 on Friday. It will be nice to be situated, so we can officially unpack.
He had his labs today, and his weight did not go up as we had planned. We were both pretty disappointed. We still have a little more then a week left, so he promised to listen to me the rest of the time and eat past the point of being full. A tummy ache is small price to pay for having a more healthy body for chemo. On a good note, he was very brave during the blood work for labs. He had his ort accessed for the first time in a month, and handled it very well. He's actually been in a better mood then me today. I've been a bit unpatient and even a little grumpy. Hopefully after we get settled in our routine and into the Target House we'll ( I guess I mean I'll) be in a better mood. The weight really got to me too. We've been working so hard, but he can be real convincing. He keeps telling us he's stuffed. The next week there are no excuses....He will eat beyond being full every meal of the day, plus snacks. He's on board, and there doesn't seem to be any hesiation or opposition from him. His way just didn't work, and he seems to accept that.
Other then that things are good. Kevin's in a pretty good frame of mind, and his health and energy are good.
Monday, May 12, 2008
Well, our 3 1/2 weeks are up. Rachel drops Kevin and I off at the airport tomorrow afternoon. All of us have know all along Kevin was going back. I think one of the surprises is the extent that Kevin was able to transition back to life after his 2 + months at St. Jude. He never even missed a single gym class at school. Starting last Friday we've begun to say our good byes. We went to his old Elementary School and visited his first grad teacher, Mrs. Smith, who is a cancer survivor herself. Other staff members were absolutely thrilled to see him as well. Mrs. O'brien one of the office secretaries and the gym teacher were particularly pleased to see him. I think he got more hugs then he quite knew what to do with. Seeing a very masculine male gym teacher well up with tears when he saw Kevin (he had no idea he was coming to visit) made me almost lose it myself. Kevin was a bit overwhelmed, but it's real raw emotion from people who've been in his life. Once in a while it's important he knows the extent he's touched those around him.
Today the good bye parade continues as his class is having an ice cream party for him this afternoon. He's been a little bit back to normal this past week, as he asked me what day it was...I told him Thursday, and he said "that's awesome, only one more day of school until the weekend!". This was actually nice to see, as it shows he's come back full circle, and now counts the days until he doesn't have to go to school....he's not so starved for it anymore.
This evening we meet with the Make a Wish Foundation. I'm not sure what's going to be involved, but hopefully they'll be able to accomodate Kevin's wishes. He wants all of us: Mike, Rachel, Scotty, Jakey, and me to be able to go on the trip together. It will be something to look forward to when the chemo is completed.
24 hours from now Kevin and i will be on a plane to memphis. I guess at the end of the day it will be nice to get things started, so the unknown will no longer be....and we can get the proverbial show on the road.
Sunday, May 11, 2008
Saturday, May 10, 2008
Please write your local senators (click the link to the left to send a quick email) in honor of Kevin's battle with cancer & ask them to support Senator Clinton in companion bill (S 2877) to HR 4450, The Pediatric, Adolescent and Young Adult Cancer Survivorship and Quality of Life Act to improve and expand the delivery of medical and psychosocial care to survivors of childhood cancer.
What really hit me hard was what the article said about suvivorship, "By 25 years after diagnosis, 13 percent did not survive, most commonly from recurrent ALL (Acute lymphoblastic leukemia) or from a second cancer, the report indicates. Compared with siblings, ALL survivors were 2.8-3.6 times more likely to experience a chronic medical condition and a severe chronic medical condition, respectively. The study also reports that the mortality rate was higher in subjects treated with radiotherapy than in those who had not: 23.3 percent vs. 13.4 percent.
Additionally, survivors' social and economic outcomes, including rates of marriage, college graduation and health insurance coverage were significantly lower than those of their siblings. The study highlights the importance of practicing clinicians recognizing that because the cancer survivor population is growing and aging, in many instances late complications of therapy will not become evident until many years - even decades after the child has completed therapy."
Side Note: ALL is the most common childhood cancer.
Thank you for supporting us!
Monday, May 5, 2008
What is medulloblastoma?
Medulloblastoma is a type of brain tumor that occurs in infants and young children. It represents about 20% of all pediatric CNS cancers. By definition, medulloblastomas occur in the cerebellum, which is the back part of the brain that controls walking, balance and fine motor coordination, among other things.
Medulloblastoma is a long name made up of three smaller words: medulla = Latin for marrow, meaning inner substance or core; blastos = Greek word for germ, meaning young, primitive, not fully developed; and oma = Greek for tumor. In other words, this is a tumor of primitive, undeveloped cells located inside the cerebellum. The patients’ average age at diagnosis ranges between five and seven years. Boys are affected more often than girls (sex ratio about 1.5:1)
Cancer cells are natural body cells which behave abnormally (or have mutated) after which they don't preform their natural function, they just keep dividing. They can grow rapidly, causing tumors which interfere with the normal functions of the body. A single cancer cell can grow into a tumor or metastasize, sending cancer cells to other locations in the body, where they can grow into tumors. The challenge is trying to eliminate cancerous cells from our bodies. It is important to kill every one of them. Since they are a part of our body, it is difficult to target only those cells. To accomplish that task, current medical technology offers surgery, chemotherapy, and radiation therapy, and, for some, stem cell rescue.
The first step in treating Kevin’s tumor was surgery. Immediately following the MRI Kevin was scheduled for the first of three surgeries, 2 of which he would have within 24 hours. Kevin’s tumor caused pressure to build up in his brain so much they were concerned he could have a stroke. So they placed an EVD into his head to drain the fluid that had been building up in his brain. The next surgery was a craniotomy and performed by Dr. Sood. He removed almost the entire golf ball sized tumor from Kevin’s head except for a few microscopic cells that had started to grow into his brain. After Kevin’s 2nd, 6 hour long, surgery Dr. Sood informed us pathology would confirm if it was cancer but he was pretty sure it was Medulloblastoma, a rare type of brain tumor cancer (about 350 children in the U.S. are diagnosised each year). In a week, we received the pathology report, which did confirm - unfortunately it was a Medulloblastoma, which is malignant (aka cancerous). A couple of days after surgery, Kevin received another MRI and then later he was given a spinal tap. Neither of these test detected any cancer cells in his body. Before leaving Children’s Hospital of Michigan Kevin had his 3rd surgery replacing his EVD line with a shunt and placing a port in his chest.
While Kevin was in Children’s Hospital of Michigan I started looking into the best places for Kevin to receive treatment. At the same time a women named Kathy contacted us via our family blog when our post with Kevin’s diagnosis came up in her Google search. Her son had a form of medulloblastoma and had been treated successfully at St. Jude Children’s Hospital in Memphis. Along with her and another mom/Dr. (whose daughter had the same cancer but is out east) helped me sort out which protocol would be best for Kevin. As soon as Kevin came home I contacted St. Jude and within 72 hours me, Kevin and baby Jake were on our way to Memphis for 8 weeks, we would get to come home for 3 ½ weeks then return for 4-6 months for chemo and stem cell rescue. Eric, Mike and Scotty arrived the weekend after.
The initial treatment included the use of radiation therapy to try to destroy any tumor cells left behind after surgery. Kevin completed his radiation treatments at the end of April 2008 in St. Judes new Chili Care Center.
How Radiation Therapy Works
Radiation treatments or radiotherapy directs high-energy x-rays at targeted areas of the body to destroy tumor cells. Many brain tumors are radiosensitive, which means that the cancer cells can be destroyed by radiation therapy. The challenge to using radiation is to deliver it in such a way that it does minimal damage to healthy cells and maximum damage to tumor cells. There is also a limit to the amount of radiation an individual can receive in his or her lifetime, so doctors are careful in determining dosage and total amounts to be given.
What Makes Brain Tumors Radiosensitive
Rapidly dividing cells in tumors have unstable DNA (the material in the cell that tells it how to grow). This DNA is susceptible to damage from ionizing radiation. Normal cells can also be damaged, but they are more likely to repair themselves to a certain degree, though some may never be completely normal again either. The repair mechanisms of cancer cells are not very effective, so cancer cells tend (hopefully) to not grow back.
Kevin Radiation Treatments
Kevin’s radiation treatments were divided into 2 parts, which were administered daily, excluding weekends. During the first part, he was given 13 treatments to his full head and spine ("cranial-spinal radiation "). During the second part, called the "tumor boost", Kevin was given 18 treatments to the area of the brain where the tumor was removed (the posterior fossa).
After Effects of Radiation of Brain & Spine
Red or Brown discoloration of the skin.
Upset Stomach or vomiting
Low Blood Counts
Decreased Growth or shorter heights than expected
Learning Difficulties (ADD, loss of IQ points, slower processing speed etc.)
Problems with Memory
Damage to some brain cells close to the tumor sight, this is called necrosis
What is Chemotherapy?
Healthy cells grow in a well-established pattern, and when they divide, typically an identical copy is produced. The body makes only the number of normal cells that it needs at any given time. As each normal cell matures, it loses its ability to reproduce and it is also pre-programmed to die at a specific time.
Tumor cells, on the other hand, reproduce uncontrollably and grow in an unpredictable way. Chemotherapy involves the use of drugs that damage rapidly multiplying cells, such as those found in brain tumors. There are hundreds of chemotherapy drugs and they use a variety of approaches to destroy cancer cells.
Unfortunately, some good normal cells are damaged along with the bad tumor cells. The normal cells which are most often affected are those which grow and divide rapidly, including cells in the bone marrow, hair, mouth, and intestines. Hair loss is an example of a side effect due to damage to “good” cells. Unlike tumor cells, however, normal cells do repair themselves. Each child reacts differently to each chemotherapy drug. Some children experience severe side effects, while others do not. They try, as best as possible, to manage many of these side effects by various measures.
Chemotherapeutic agents are chosen based on several characteristics of the tumor cells. A child’s doctor may select different drugs to damage the tumor cells in different parts of their life cycle or to interrupt various cell functions. The frequency of chemotherapy treatment depends on many factors and the effect of the chemo medicines on any certain child’s healthy cells can be a factor in determining frequency of the treatments.
In order to make the most progress in treating childhood brain tumors, doctors coordinate their efforts through clinical trials. Clinical trials, also called studies or protocols, involve designing a particular treatment program to treat specific types of tumors. Doctors evaluate these treatments and try to decide how to improve survival rates and reduce side effects. Each study or protocol builds on those that have gone before it.
Kevin’s treatment consists of surgery, radiation, high dose chemotherapy followed by stem cell rescue (called the SJMB03, which was written by Kevin’s Dr., Dr. Gajjar). This treatment has been in development over the last 5-12 years. Kevin has completed the surgery and radiation part of this treatment plan. The chemotherapy, which will start in May (this month), is planned to last for about 4-6 months ( and is described below) as long as when he goes back (in a little over a week) there no new tumors have started to sprout up.
High Dose Chemotherapy with Stem Cell Rescue.
As mentioned, chemotherapy drugs kill rapidly growing cells, so one of the limiting factors for the dosage of chemotherapy is how much damage it will do to healthy cells. Blood is composed of many different types of cells, each with its own function for maintaining a healthy body. All blood cells are produced by stem cells, which are a part of the bone marrow. Because they grow rapidly, stem cells are vulnerable to chemotherapy drugs and will be killed when high doses of chemotherapy are given. In order to use high doses of chemotherapy, stem cells are "harvested" from the body before chemotherapy begins, and then infused back into the body after chemotherapy is completed (i.e. they rescue the body's blood production system). Stem cell rescue allows us to use very high doses of chemotherapy drugs to attempt to destroy every cancer cell in a body. As a side effect, almost every other rapidly dividing cell is killed, leaving the body with very little resistance to infections. A few days after chemotherapy, the stem cells which have been harvested and frozen are returned to the body where they magically find their way back to the bone marrow ("engraft") and resume blood cell production. It takes a few weeks for the stem cells to produce enough white blood cells for the body to fight off infections on its own. While the blood system is regenerating, Kevin has to stay relatively isolated , with his health closely monitored and taking antibiotics, fluids, and perhaps nutrition through his lines.
IMPORTANT: It is important anyone, siblings & family, coming to Memphis to help MUST wash hands almost obsessively in order to try to keep Kevin from any infection. If you are coming to help and feel the slightest hint of a cold it would be best for you not to be in the same room or near as him or Jake. We will find other ways for you to help that doesn’t involve care of the kids. Do not let Kevin push or touch button or handles in public (even the hospital) like elevator buttons or restroom door handles during these 4-6 months. Kevin MUST wear his mask outside of the apartment at ALL times.
Stem cell mobilization and harvest
Under normal conditions, stem cells reside in the bone marrow where they can be harvested by poking a pelvic bone needle into the pelvic bone and extracting them. An easier and less painful way to harvest them is by attempting to force them into the bloodstream ("mobilization") where they can then be extracted directly from the blood using a centrifuge. In order to encourage Kevin’s stem cells to move out of his bone marrow and into his blood, a medicine to encourage stem cell growth (a "GCSF") will be used. Starting on May 16th will be given a dose of the GCSF every day for a week or so. During the week of May 19th Kevin’s blood will be tested to see if it is feasible to extract stem cells. Radiation treatments make it more difficult to mobilize the stem cells into the blood, so the fact that Kevin had radiotherapy decreases the likelihood that stem cells can be harvested from his blood. If they can't be harvested from his blood, they will be harvested from his pelvic bones with a needle. Harvesting stem cells from the bones takes place in a surgical suite under anesthesia and Kevin will be uncomfortable for a couple days afterwards. Kevin is scheduled for surgery on May 20th to remove his current port and to put in what they call a Hickman catheter line.
-4 Cisplatin, amifostine, and vincristine
-3 Cyclophosphamide and mesna
-2 Cyclophosphamide and mesna
-1 No chemotherapy - day of rest
0 Stem cell transplantation, he will be given a his infusion of stem cells
+1 G-CSF starts (stimulates stem cell production)
+6 Vincristine, G-CSF continues
Next: Kevin will leave the hospital and his blood counts will take a week to drop to zero. He may have to go back in the hospital during this time if he develops any type of a fever. While his blood counts are low he will not be able to go to crowded places (school, malls, movies, etc.). We will need to be extra cautious and make sure everything is clean around him, that he wears his mask, and he and everyone around him wash there hands ALL the time and it is important that his caregivers are well also. Once the doctors feel Kev is well enough (about 4 weeks) he will be readmitted to the hospital and he will go through another cycle of high dose chemo/stem cell rescue procedure until he has completed a total of 4 rounds of high dose chemo/stem cell rescue procedure. During all of this Kevin will probably require blood transfusions and platelets. Kevin’s blood type is A negative (refer to below, A Short Course in Hematology).
For this part of his treatment, Kevin will require medicines, fluids, nutrition, contrast dyes, and blood to be administered intravenously. In order to avoid the pain and stress of inserting needles into his veins for each of these procedures, Kevin will have a Hickman catheter implanted under his skin in his chest. The Hickman catheter consists of a two-chambered tube (divided longitudinally down the middle) which runs from one of the major ateries of the heart out of his chest where it divides into two lumens . Each time Kevin receives fluids, the medical staff will use the Hickman catheter, which is much better than trying to stick an IV needle into his veins every time.
During chemo Kevin maybe put on a low bacteria diet. Please ask to see the list of things Kevin can eat before offering him any food during this time or please check with one of his parents. This is very important because not following the doctor prescribed diet can cause Kevin to come down very sick, or cost him his life.
A Short Course in Hematology
Our blood is made up of two components: liquid and solid. The liquid part of the blood is called plasma. The solid part is made up of cells. There are essentially three types of cells in the blood:
1. Red blood cells - bring oxygen to our tissues.
2. Platelets - help the blood clot, the stop bleeding.
3. White blood cells (WBC) or Leukocytes- identify, attack, and destroy infection and cancerous cells. The white blood cell system is very complex. T-cells are a type of WBC which regulate immune responses. CD4 cells are a type of T-cell (they are also called helper T-cells) that co-ordinate the immune system's response to certain micro-organisms such as viruses.
For more information about blood counts click - Blood Counts -
Central Nervous System Problems
Chemotherapy may cause temporary confusion and depression, which should go away once treatment is completed.
Other central nervous system side effects can include:
The doctor will monitor your child's blood counts to check for anemia (low levels of red blood cells, which are made in the bone marrow and carry oxygen throughout the body). Red blood cell transfusions may be necessary.
- Blood Clotting Problems
- Chemotherapy drugs may inhibit the body's ability to produce platelets, which help blood to clot. Your child may bleed or bruise easily because of a reduction in platelets (called thrombocytopenia). Platelet transfusions can be given to treat low counts.
- Increased Risk of Infection
- Chemo may cause a reduction in white blood cells, which are part of the immune system and help the body to fight infection. Therefore, your child is more vulnerable to developing infections during and after chemo.
Infection precautions: Remind kids and caregivers to wash their hands before eating, after using the bathroom, and after touching animals. Friends or family members with contagious illnesses (such as a cold, the flu, or chickenpox) should refrain from visiting. Try to avoid crowds and children who have received certain vaccines, such as chickenpox or oral polio — these are live-virus vaccines and can spread disease to kids with low blood cell counts. Your child also shouldn't receive immunizations without your doctor's OK. And to prevent food-borne infection, your child shouldn't eat raw fish, seafood, meat, or uncooked eggs.
• Long-Term Side Effects
Chemotherapy can cause long-term side effects (sometimes called late or after effects), depending on the type and dose of chemotherapy and whether it was combined with radiation. These effects may involve any organ, including the heart, lungs, brain, kidneys, liver, thyroid gland, and reproductive organs. Some types of chemotherapy drugs may also increase the risk of cancer later in life. Receiving chemo during childhood also may place some kids at risk for delayed growth and cognitive development, depending on the child's age, the type of drug used, the dosage, and whether chemotherapy was used in addition to radiation therapy.
I also recommend, "Long-Term Survivors of Childhood Cancer: The Late Effects of Therapy"
Sunday, May 4, 2008
Friday at school, Kevin gave his teacher and admistrators a bit of a scare. Kevin's shunt travels down his head to his neck, to his rib cage, to his stomach. His side once in a while gets very sharp piercing pain, due to the extra slack from the cathetar. We've experienced this before, and have learned to help him deal with it when it occurs. At any rate, he started having intense pain in class, and it didn't subside. They brought him to the office and they called Rachel. I came straight home as well to see him. Laying down didn't help any, so after a while I had him stretch out and walk around. The motion must have moved the slack away from wherever it was pressing on a nerve, and just like that he was pain free. Bonnie, Rachel's neighbor/friend/God-send helper, was there as well. He felt so good he finished off the day in school (only another 75 minutes or so) then had a play date with his friend Max from school and Cub Scouts. He's felt great all weekend. We went to Scotty's soccer game on Saturday. He's really improving, having a good nack for the ball. Once he gets there he's still a little apprehensive, but he's younger then most of the other kids on the team. He has good instincts and agility, and we look forward to seeing him progress. After the game we went to Grandma and Grandpa's house in Rochester Hills. He had a great time. Familiarity is something Kevin longed for in Memphis, so we've attempted to let him experience virtually all that he was accustomed to prior to his diagnosis. We weighed him on Saturday, and he was just a hair shy of 48 lbs. This is good news, as he was down to 46 lbs at one point. He's very optimistic that he can get to 50lbs and it's been verbalizing it as motivation when he eats. He starts chemo on the 23rd or 24th, so he still has time to gain the weight. He took to Radiation so well, Rachel, Mike, and I pray that he responds even 1/2 as well to chemo.
I here some arguing upstairs on the wii, so I will go police and sign off.
Thursday, May 1, 2008
For those who run or walk there are a couple of Brain Tumor races coming up!
For those in the Washington D.C. area, I know this is last minute but Kevin's Aunts and Uncle have formed a team in honor of Kevin. If you are interested in joining them this weekend follow this link for more information: Team Kevin Saarela
Hometown Heroes MileStones Walk
Saturday, May 24, 2008
9:00 AM Registration
The Celery Flats7335 Garden Lane
The Hometown Heroes MileStones Walk is a pledge walk that unites people in the fight to reach the day when every child with cancer can be guaranteed a cure. Its goals are to increase awareness of childhood cancer and to raise the revenue needed to support the life saving research conducted by the Children's Oncology Group.
For more information and to register
MileStones Walk website
June 22-24, 2008Washington, DC
CureSearch Reach the Day Conquer Childhood Cancer will be held in Washington, DC, on June 22-24
Join us in Washington, DC, and across the country in raising awareness about childhood cancer and the urgent need for additional funds for research.
Hotel information: The host hotel for Reach the Day is The Liaison Capitol Hill. Please note cut off date for reservations is May 30. Details below under the Washington, DC Event "Learn More" link.
Questions? Contact us at: firstname.lastname@example.org
View/download the poster (PDF format) >
Just a quick note regarding Kevin's grand prize (for children) at Sunday's fundraiser......Kevin gives Mario Cart for the Nintendo Wii and A+ His homework was completed last night, so we had an inordinate amount of free time before getting ready for bed. As I was doing some chores around the house, I set the game up for Kevin. After about an hour of practice, Kevin and I played in the vrs mode. Kevin kicked my butt!!!! Did I mention he had an hour of practice before I played him?...lol...... We plan on bringing the Wii down with us to Memphis so Kevin has plenty to do during the down time. Thanks again Ron & Sue for the Mario Cart game. There's nothing Kevin likes more then decisively beating his dad in a video game. He's even hit new highs with his trash talk. Such a competitive boy....I wonder where he gets that from :-)