Kevin’s Cancer Treatment for Medulloblastoma

I have been working on this for a while and this maybe still a work in progress, so there maybe changes. But hopefully it will answer some questions. - Rachel

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
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.

Surgery
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.


Radiation
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
Hair Loss
Low Blood Counts
Decreased Growth or shorter heights than expected
Hormonal problems
Thyroid problems
Learning Difficulties (ADD, loss of IQ points, slower processing speed etc.)
Problems with Memory
Second Cancers
Damage to some brain cells close to the tumor sight, this is called necrosis
Scoliosis


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.

Kevin's Chemotherapy

“High-dose chemotherapy and autologous stem cell transplantation (SCT): Six weeks after the completion of radiotherapy, patients receive high-dose chemotherapy comprising vincristine IV followed by cisplatin IV over 6 hours on day -4 and cyclophosphamide IV over 1 hour on days -3 and -2. Patients undergo autologous SCT on day 0. Patients receive filgrastim (G-CSF) subcutaneously beginning on day 1 and continuing until blood counts recover. Patients receive vincristine IV on day 6. High-dose chemotherapy and autologous SCT repeat every 4 weeks for 3 additional courses in the absence of unacceptable toxicity.” – taken from http://www.cancer.gov/clinicaltrials/SJCRH-SJMB03#Outline_CDR0000367486

On the evening of May 22, 2008 Kevin will be admitted to the hospital the 1st of 4 monthly rounds of the high dose chemo/stem cell rescue procedure. That evening they will start IV fluids and the following day is -4.
Day Chemotherapy

-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:

• Anemia
  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"

Kevin's weekend

Kevin's been feeling quite energetic of late. Right now as I write this (it's about 1:35 e.s.t.) Kevin's playing the Wii with his friend Kyle. They're both quite the video bowlers, and Kevin's so good at Super Mario Cart that typcially his friends get tired of losing and wish to go on to the next game. I'm trying to work on sportsmanship with Kevin. He can be a bit of a boastfull winner, and you really don't want to see him when he loses. I simply took the controller away from him, and played Kyle in a game, while he took some time to cool off. He's seemed much better since his little break. He's been eating very well of late. I think some of the side effects of the radiation, at least in regards to appetite, have begun to wear off. He still gets a little bit naseaus when he go's too long without his nausea medicine, so I make sure Rachel and I adminster that like clock work. Speaking of nausea, Rachel's fell a bit under the weather today, which is why Kevin's still over our house. We all hope for a speedy recovery for Rachel.

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.

Eric

'08 Race for Hope

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
Date:
Saturday, May 24, 2008
Time:
9:00 AM Registration
Location:
The Celery Flats7335 Garden Lane

Portage, MI
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.
Register now>
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: reachtheday@curesearch.org
View/download the poster (PDF format) >

Mario Cart

(written by Eric Saarela)
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 :-)

Eric

Kevin's Bowling Fund-raiser

(written by Eric Saarela)

The bowling fund raiser on Sunday was an enormous success!! Thank you to everybody who supported Kevin by contributing to the event. Kevin had a great time, and as many of you saw was full of energy. He enjoyed picking out the winning tickets for the raffles...I think he felt like it gave him some power or control, which is something he's sacraficed with his battle with medulloblastoma. Not only did we all have an exceptional time, but the money that was brought in was astonishing. Personally, I've always been a bit private if not reclusive, but the way several communities of people, some of which i've never met, have opened their hearts has been an incredible growth experience for me. Ron, Sue, Judy and the rest of the crew put forth so much effort. I want to give an extra special thanks to Judy Paczek. I had my speach all planned out, with a special thanks to her included, but speaking in front of 300 people turned out to be a daunting task, which unfortunately lead to me forgetting to publicly thank Judy or Kevin's mother Rachel (both of whom were a rehearsed part of the thank you). So, Judy your work will forever be appreciated. You're one of the most kind and selfless people I've come to know. I also planned on thanking Rachel for the enormous sacrafices she's made in being a constant presense for Kevin down in Memphis TN. None of this could have worked without your sacrafice and committment.

One of the most enjoyable parts of the bowling event was re-connecting with so many dozens of friends and ex-coworkers. As we get older we usually only keep a handfull of friends or so in our communicative circle. However, after seeing so many people I care about again, I regret not having kept better contact with so many of the extraordinary people I've been close to. Thank you all for attending.

Kevin and I will be returning in just shy of two weeks. Until then the objective is to eat as much as possible, so he can start his chemo off at a healthy weight. He's been with Rachel since the fundraiser on Sunday, so I'm eager to see how his appetite is over the next four days with me. Like Rachel, I too have so much trepadation with our return to Memphis. It's been so magical having Kevin home these past 2 weeks. Returning back to the world of MRI's, Spinal Taps, labs (blood drawn), and finally starting 5/23 chemotherapy. It has occurred to me that Kevin's current health is probably the best we're going to see him for quite some time. On the positive side though, I'm very optimistic that at the end of the day Kevin is going to make a grand recovery. He has the heart, courage, resiliancy, and stubborness so see this journey through. I look at him with great awe sometimes. His strength and courage makes it that much easier for me to be strong, and I suppose it's a full circle as the stronger I am the better for Kevin. I've been researching with great fervor, the upcoming chemotherapy process. I try to tempor my optimism with the reality that the treatment will be far from easy for all of us, especially kevin. I really don't think he has a grasp how tough high dosage chemo is going to be on his body. There's a light at the end of the tunnel, but we're only 1/4 of the way through the tunnel.

Everybody's support has been such an enormous booster to our attitude and optimism. Nearly 300 people in one bowling alley was an incredible accomplishment, and will forever be appreciated. It also served somewhat as a going away party for Kevin, Rachel and I. I plan on spending all of Kevin's inpatient time in Memphis with him at the hospital. At any rate, thanks again to everybody and we'll try to keep everybody posted for the rest of the journey.

Eric

2 weeks - thank you Eric for correcting me

Kevin & Eric will return to St. Jude Tuesday May 13th. So we have just a little under 2 weeks of our break left. I must admit to being completely scared of this next step.

When we go back Kevin will have MRI's to see if the cancer has metasized again, or if he gotten a tumor anywhere else. Please pray that there is no more tumors ever for Kevin.

Earlier this evening as I was listening to Kevin and Scotty get ready for bed, I started to get this sinking feeling, as much as I don't want it to be true I know there is a risk that Kevin may not make it through this. I can't help but worry what if this treatment doesn't work? And I am scared of how sick the chemo is going to make Kevin and I can't help but feeling this overwhemling sadness about how this is changing his body and causing other issues we will have to deal with once we are through this treatment. I am edggy about the upcoming MRI's telling me something I don't want to hear.

While researching medulloblastoma I found a little boy Mo who was dx in 2003 with medulloblastoma. The beginning of his story sounds so much like Kevin's, I am praying that for our sake it turns out different. I said a little pray for his parents. For a moment this evening I think I felt the pain they must feel. I am reminded that I am very grateful for today; that me and all three of my boys got to enjoy a 1/2 day off from school together with friends at Jungle Java.

Hopefully this is just a moment I am having. Kevin has been a little bit sleeper than normal in the evening lately & a little bit moodier but he is still going strong all day.

Take Care,
Rachel

NY Times article & Medullo Treatment Intro

NY Times Article
My Daughters Are Fine, but I’ll Never Be the Same
By HARRIET BROWN
Published: April 8, 2008
A child’s close call with death reverberates through the rest of a parent’s life.

Below is some information I gleened from St. Judes website. It is a very high level intro overview of treatment options for Kevin's type of cancer. I will write up a more detail explaination of the protocol (clinical trial) Kevin is apart of next week.(http://www.cancer.gov/cancertopics/pdq/treatment/childmedulloblastoma/Patient/page4)
Treatment Option Overview

Key Points for This Section

There are different types of treatment for children with childhood medulloblastoma.
Children with medulloblastoma should have their treatment planned by a team of doctors with expertise in treating childhood brain tumors.
Some cancer treatments cause side effects months or years after treatment has ended.
Four types of standard treatment are used:
Surgery
Radiation therapy
Chemotherapy
Cerebrospinal fluid diversion
New types of treatment are being tested in clinical trials. These include the following:
High-dose chemotherapy with stem cell transplant
There are different types of treatment for children with childhood medulloblastoma.
Different types of treatment are available for children with childhood medulloblastoma. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients with cancer. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment.
Because cancer in children is rare, taking part in a clinical trial should be considered. Clinical trials are taking place in many parts of the country. Information about ongoing clinical trials is available from the NCI Web site. Choosing the most appropriate cancer treatment is a decision that ideally involves the patient, family, and health care team.
Children with medulloblastoma should have their treatment planned by a team of doctors with expertise in treating childhood brain tumors.
Treatment will be overseen by a pediatric oncologist, a doctor who specializes in treating children with cancer. The pediatric oncologist works with other pediatric doctors who are experts in treating children with brain tumors and who specialize in certain areas of medicine. These may include the following specialists:
Neurosurgeon.
Neurologist.
Neuropathologist.
Neuroradiologist.
Rehabilitation specialist.
Radiation oncologist.
Medical oncologist.
Endocrinologist.
Psychologist.
Some cancer treatments cause side effects months or years after treatment has ended.
Some cancer treatments cause side effects that continue or appear months or years after cancer treatment has ended. These are called late effects. Late effects of cancer treatment may include:
Physical problems.
Changes in mood, feelings, thinking, learning or memory.
Second cancers (new types of cancer).
Some late effects may be treated or controlled. It is important to talk with your child's doctors about the possible late effects caused by some treatments. (See the PDQ summary on Late Effects of Treatment for Childhood Cancer for more information).
Four types of standard treatment are used:
Surgery
Surgery is used to diagnose and treat childhood medulloblastoma as described in the General Information section of this summary.
Radiation therapy
Radiation therapy is a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells or keep them from growing. There are two types of radiation therapy. External radiation therapy uses a machine outside the body to send radiation toward the cancer. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer. The way the radiation therapy is given depends on the type and stage of the cancer being treated.
Radiation therapy to the brain can affect growth and development in young children. For this reason, ways of giving radiation therapy that limit damage to healthy brain tissue are being studied.
Conformal radiation therapy uses a computer to create a 3-D picture of the tumor. The radiation beams are shaped to fit the tumor.
Stereotactic radiation therapy uses a head frame to aim radiation at the tumor only.
Chemotherapy
Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly into the spinal column, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy). The way the chemotherapy is given depends on the type and stage of the cancer being treated.
Because radiation therapy can affect growth and brain development in young children, clinical trials are studying ways of using chemotherapy to delay or reduce the need for radiation therapy.
Cerebrospinal fluid diversion
Cerebrospinal fluid diversion is a method used to drain fluid that has built up around the brain and spinal cord. A shunt (long, thin tube) is placed in a ventricle (hollow space) of the brain and threaded under the skin to another part of the body, usually the abdomen. The shunt carries excess fluid away from the brain so it may be absorbed elsewhere in the body.
New types of treatment are being tested in clinical trials. These include the following:
High-dose chemotherapy with stem cell transplant
High-dose chemotherapy with bone marrow or stem cell transplant is a way of giving high doses of chemotherapy and replacing blood-forming cells destroyed by the cancer treatment. Stem cells (immature blood cells) are removed from the blood or bone marrow of the patient or a donor and are frozen and stored. After the chemotherapy is completed, the stored stem cells are thawed and given back to the patient through an infusion. These reinfused stem cells grow into (and restore) the body’s blood cells.

Kevin's weekend at Dad's house

(written by Eric Saarela) First off the Hall Party fund raiser on Friday night was such a great time! I was able to see old friends that I really haven't had a chance to see in quite a long time. Thank you once again, Kristi, April and Denise.....We had a terrific time, as did everbody else.

Our family had a small gathering on Saturday, which served the duel purpose of a Birthday party for my dad (he wanted to wait until Kevin was home) and a welcome home for Kevin. Rachel, Scotty, Mike, and Jacob were there as well. We had a pretty simple but fun time eating pizza, opening gifts, then finally playing Kevin's new Nintendo Wii. Kevin's strength and stamina has been excellent. We played the Wii off and on all weekend, which involves a lot of movement on the part of the participants.....I think I wore out quicker then Kevin. After the party we all went to Scotty's soccer game. It was a lot of fun watching Scotty run around after the ball. He's still not 100% sure what to do once he gets close to the ball, but that will come in time, as he gains some more confidence. Kevin said he wants to help Scotty improve his game. After the game Scotty came over, and the 3 of us played on the Wii throught the afternoon and evening. Scotty was quite the boxer, and Kevin is a good bowler and can beat me in Tennis. Kevin was so happy to sleep in his bed again (well actually he slept in daddy's bed, but it was still nice). He's really using this period of time to get some normalcy back in his life. I can't help but admire his strength and determination. We also went to target on Saturday to get a second controller for his Wii. Kevin had a moment while we were eating that was a bit emotional and an opportunity for both of us to learn. Kevin's very proud and a bit stubborn regarding wearing a hat (he wanted no part in it). He figures people will have to accept him for what he is. Our only rule is he must wear a hat outside because of the sun. Any way, this works in Memphis when people are accustomed to seeing kids undergoing treatment. In Commerce Twp though it's still a bit of a shock. We had a couple of incidences in Target where people approached him directly. They were trying to be nice, but after the second episode while we were trying to eat, Kevin looked at me straight in the eyes and eloquently said "daddy, I think I want to start wearing a hat". He went on to explain that although he's proud of who he is, he wants to be treated like a normal kid. He doesn't want people making such a fuss (much less strangers) whenever he's out in public. He just wants to be normal, especially during this period of time back home before the chemo. It was a learning experience and quite the epiphany for a seven year old boy.

Sunday was a day Kevin's been awaiting for quite some time; he got to play with his best friend Kyle. Kyle had a Detroit Pistons hat and Jersey for Kevin. Kyle actually won the opportunity to be a Piston's junior ball boy, for 1 game. Kevin was touched that Kyle thought of Kevin while having the time of his life at the game. At any rate, Kevin and Kyle played and played and played from 10:45 a.m. until 7 p.m. on sunday. The played Wii, colored, board games, more wii, and played with more toys. Kevin had such a good time with Kyle, and it was hear-warming watching the smiles on both of their faces. Kevin was on his best behavior, and both of them even obediently cleaned up their multiple messes when it was time for Kevin and I to walk Kyle home. Afterward he did his homework and watched the pistons game with daddy. this was not as much fun as they lost to the inferior 76ers.

From what I hear Kevin's had a great time at school as well. He really likes his teacher Mrs. Stout (as do Rachel, Mike and I). He's felt at home in his class room, and it seems with his home bound schooling at St. Jude, he has not fallen much behind. He wants to soak in every day back home, and school is a big part of this. He had one nasuea incident his first day back, but has been good since then (he didn't take his medicine that day). Wednesday is Kevin's cub scout pack meeting. They're awarding rank badges, and the troup leader indicated kevin will be awarded his Wolf badge despite missing the last few months with his illness. Kevin's excited to see all his friends at Cub Scouts as well.

Sorry for writting so much, but I don't have the opportunity to write on this site very often, and I had a lot of updates to share with everybody. Everybody has been so terrific, and i can't thank you all enough!

Silly String Wars

Friday we ended up having a very impromptu get together of neighbors and kids. The kids had silly string wars, water balloon throwing, pizza and we all just enjoyed each others company. One thing Kevin's cancer has really driven home to me is that everyday is a blessing and there is no promise of a tomorrow for any of us. I am trying really hard to smile more, enjoy the days God has given me and my family together, enjoy our friends, new and old. I feel very blessed that so many have reached out to us in our time of need. I know it has lifted Kevin's spirits, it has lifted my spirits when we really needed it. I could not imagine, nor do I want to, going through this feeling all alone. All of the prayers, generosity, and well wishes defiantly help to make all of us stronger, keeping us from breaking through this terrible illness. Please know that your actions matter and we really do appreciate them. I know first hand all of the prayers make a big difference. And not to say that there aren't days in Memphis when I don't feel like I am in hell. There are plenty of days when Jake is fussy, Kevin is jumping all around (or bitter & mad at me)and I am trying to understand what in the heck the doctor is trying to tell me about Kevin and his treatment through all of the noise. Or when Kevin feels ill and Jake, once again is not going to cooperate and help me out by being less demanding; Or when I miss Scotty and Mike terribly (which was a lot toward the last couple of weeks). Those are the times I feel like I am in hell. But there are the times when Kevin has to get up early to go to the hospital and he just doesn't want to get moving and I put Jake down on the bed next to him and Kevin just smiles, I can see how the bond between the two just brightens Kevins spirits. It is wonderful to see how much adding a brother means to Kevin and Scotty.

And there is something about Jake that makes me feel like our family is finally complete when we are all together, there isn't anything missing anymore, like the way I used to feel. Yes, it is a challenge and I am worried about how I am going to make it through chemo with both Jake and Kevin to take care of mostly on my own. But I wish Scotty could be there with us too and I keep trying to figure out how to get it so I can have all of my boys together through out this upcoming summer despite Kevin’s chemo and it being totally crazy and try to take care of all 3 on my own. I miss him so much and we aren’t complete without each other.

I know some people have asked about what Kevin’s chemo will be like. I will put the details of his upcoming treatment up in the upcoming weeks.

As for right now, Kevin seems to be handling the after affects of radiation fairly well. We just need him to eat lots of healthy food right now to build up his weight and get his body as healthy as can be for chemo. He spent this weekend surrounded by friends and family. Scotty is happy to have his brothers and mom home. Auntie Bonnie is doing a great job and we really appreciate how her kids have included Scotty as one of them. I really appreciate everyone who has helped out with Scotty over the last couple of months. Thank you so much for helping us try to keep it as normal as possible, (of course that is all relative when your mom and brothers are missing from daily life) but it could have been much worse if he would have had to change schools. Big THANK YOU to all who have helped and continue to help. You are my angels.

Thanks for checking on us! Take care!
Rachel

Back to School

 
 


Kevin went back to school yesterday. He had a good day. He loved being back!

Finally Internet Access!!

I could not get the computer to connect to the network for almost a week back in Memphis but now that we are home I am up & running (thank you hubby!).

We are now back in Michigan. Kevin finished radiation and is doing great even though he lost 10 lbs. BTW Jimmy from the Radiation sedation team - send us an email, we would like to keep in touch! Radiation gave Kevin a T-shirt & balloons to celebration finishing this part of treatment.



This is Kevin with Amy from Radiation Child Life. She ROCKS! She realy helped Kevin do radiation without sedation. We are very grateful to her & the rest of the team that encouraged Kevin when he wasn't sure if he could do it.

Inspired by Oprah’s BIG GIVE theme

Inspired by Oprah’s BIG GIVE theme, Bryant Bureau and Snelling Staffing Services of Roseville have formed three teams and are organizing three different events coming up in April in support of Kevin and his family. Though the teams are all working toward the same goal, there is a friendly competition going on among them to see which team can raise the most money! COME ON OUT AND SHOW YOUR SUPPORT BY ATTENDING ONE OR ALL OF THE EVENTS!!

THE FIRST EVENT is THIS weekend in Royal Oak. A portion of the proceeds at
Hi-Tops Bar and Grille (kitty corner from the zoo on Woodward) will be donated to
The Kevin Saarela Cancer Fund on April 12th from 6:30 to 9:30 p.m. Raffles and drawings will also be going on so come on out and show your support.
Sponsored by Turkey Club.

NEXT is the HALL PARTY at Knights of Columbus Hall on 12 Mile Road in
Roseville on April 18th at 7:00 pm featuring a disc jockey, raffles and auction items. This also promises to be a great time! Please pre-register. Call the office and ask for Judy at (586) 772-6452 or email Sue@bryantbureau.net for further details.
Sponsored by Eric's Angels!

OUR LAST BRYANT BUREAU AND SNELLING STAFF SERVICES SPONSERED EVENT will be held at Fountainview Lanes, April 27th, on Groesbeck S. of 15 Mile Road in Clinton Twp. It is three games of 9 pin no-tap bowling, two slices of pizza, raffles, 50-50 drawings, auction items and it promises to be lots of fun as Kevin and his family plan to attend! Kevin will be home for a break during thay time so come on out and say hi. You do not have to bowl to participate but there is plenty of room at this time for yourself and/or your team; up to 5 on a lane. Pre-registration is requested so contact Judy or Sue (above) for a registration form. Sponsored by Kevin's Krew!

-Sue Daiza

Early findings on air pollution’s effects on brain cause concern

'....fine particles like those found in diesel soot can switch on the tumor genes that many people inherit, jump-starting the disease process that results in brain tumors.' click link to read article

Some Angels Get Their Wings & Family Visit for the Weekend

This past week was a sad one for the Ronald McDonald House. A couple of the kids here lost their battle with cancer. It wasn't anyone we were very close with here but still we had said hello and seen them around. It just doesn't seem right these little kids have to go through all of this. Eric had played some game with one of the dads who lost his son.

Kevin is now on an appetite stimulate. It seems to be helping him eat more but it is making him tired. Scotty, my mom, Eric's mom and sister (Aunt Laura) all came in for a visit. We went to the Children's Museum in town on Saturday. It was a lot of fun for the kids. Here are some pictures from our day out. I miss having Scotty around and I know he misses Kevin, Jake and me alot. It was very nice to see him and mom (& everyone) this weekend.

Information about Brain Tumors

For those who would like to understand a little about brain tumor cancer & treatment this is a good, easy to read article that also describes warning signs. I think it is a good read for all parents of young children.

Pediatric Brain Tumors —Overall Review
TADANORI TOMITA, MD

!!!!!!!THANK YOU!!!!!!!

My mom has filled me in with how many people took the time to eat dinner and participate in the Big Boys fundraiser. I am very moved so many people would come out and support our family. And I am very grateful to my neighbors, friends, Mrs. Timlin & Mrs. Stout who helped make this happen (sorry if I am missing anyone!). Mike should be posting pictures from the event sometime this upcoming week. Thank you to all who waited in line to get seated, bought T-shirts and and bracelets. Enough was raised to help cover almost a whole month of the additional travel/living expenses we are facing!!! You all are amazing and certainly our children's angels. Please know we are very grateful for everything.

Rachel

PS I also heard Friday was picture day at Glengary...a BIG THANK YOU to all the parents who had to contend with kids who wanted to wear their Kevin Hope T-shirts the next day.

Lynn - thank you for sending the pictures! It is all I have seen so far.

Radiation

Kevin is now handling radiation wonderfully since we stoped sedating him. I feel pretty strongly that it was the sedation and lack of eating that was making him so sick. W are still working on getting his appitite back. But it is slowly coming back. The dietian wants him to gain 5-10 pounds before starting chemo. Kevin is having a total of 33 radiation treatments. Then we go home for 3 weeks and then come back here to start the chemo process. I have had a couple of meeting with Dr.'s and nurses to get ready for the chemo. I will write more about it once I finish the book they gave me to read.

Here are some pictures from the past week.

Rachel

Thursday, April 3rd is Big Boy Night

COME JOIN US AT THE WALLED LAKE BIG BOY 800 N. Pontiac Trial, Walled Lake, MI 48390 TO HELP THE FAMILY OF KEVIN SAARELA, (RACHEL HERR), THURSDAY APRIL 3, 2008 5:00 - 9:00 pm.

Kevin is a second grader at Glengary Elementary who was diagnosed with a malignant brain tumor called Medulloblastoma. Kevin is currently going through treatment at St. Jude in Tennessee. Money raised will go towards medical, travel and living expenses. Kevin is expected to receive treatment for approximately one year.

10% of the total bill will go to the Family of Kevin.

There will be prizes/50-50 Raffle. T Shirts will be for sale.

Additional Fundraiser "Children's Coin Donation" - have your children bring in spare change to help Kevin and his family.

If you would like to make a donation please make checks out to Kevin Saarela Cancer Fund

Please mail to: 4070 Vanstone
Commerce, MI 48382

Thanks you so much.

Carole Costa

Kevin and (soon to be) Uncle Justin Shave their heads!

Kevin's hair was coming out, and not just in small patches. It took one trip to Fantastic Sam's and then I cleaned it up the next day as Kevin's shunt made the stylist a bit hesitant to shave it all off. One of the deals my (bonus) sister, (Nicole) finance, Justin, made with Kevin when he was in the hospital here in Michigan was he would shave his hair off too when Kevin lost all of his. True to his word he got news of Kevin's hair and shaved his head to. Way to go Uncle Justin!

Here is a picture of Justin & of Kevin getting his hair cut. Kevin has yet to let us take a picture of him without his hair.

NO SEDATION!!!!!!

(this post written by Kevin's Dad, Eric Saarela)
Mom has a well deserved week off, so dad has the pleasure of staying the entire week with Kevin at the RMH. I arrived on an early flight Thursday morning, and surprised Kevin when he was in the recovery room (following sedation) for his radiation treatment. He was full of hugs and I love you's....I think it was the aftereffects from the sedation talking. Thursday was his last radiation treatment for the spine and entire brain. Friday was his first treatment of about 4 weeks for radiation specifically targetting the tumor bed. Since this a localized area, each session takes only 15 to 20 minutes, 30 minutes on days they take pictures/x-rays. Friday was a significant day, as the plan was to begin the second part of his radiation treatment with no sedation. Rachel and I worked hard talking with the Dr and radiation technicians to convince them to try treatment without sedaion. They were reluctant during the first phase, as consequences were greater while dealing with the spine, and the duration of each treatment was much longer. Rachel spoke with the Child Life Worker, and she gave us a game plan. Rachel had me download some audio books on Kevin's Ipod shuffle. In a hurry I did this Wednesday night before my early Thursday morning flight (got about 3 hours of sleep). Long story short (I know, too late) Kevin did it!! He stalled at first, but once they got him to lay still, he was motionless the entire session. This being the longer session with X-rays, we were all confident that Kevin would be just fine for futher sessions. Friday he listened to Horton Hears a who on his I-pod; today it was the first few chapters of Charlottes Web. The technicians walked out with him after treatment today, and said he did marvelous. We're all very proud of Kevin. This means much more stability with his schedule, and affords him much more time for nourishment. His appetite seems better as well, without the sedation.

We all had a nice Easter. Mike and Scotty came down on Friday. All three boys got all kinds of Easter gifts, both from the Easter Bunny and the R.M.H. Scotty received Mario Cart for his Game Boy. Kevin received a Zoo game for his Nintendo DS. He's actually playing it right now, as we sit here between appointments in the cafeteria.

Kevin's received all kinds of cards and pictures from kids in his class room. He's read each and every card and looked at every picture. There are some artist in his room! Also, he received cards from a Second grade classroom from Commerce Elementary School. One of the parents use to have children that had his current teacher a few years ago. At any rate, they put together a care package, and the kids made some great cards and pictures. It's the highlight of Kevin's day when he gets mail or a package. We all appreciate the effort people make to let Kevin know they are thinking of him.

That's all for now. I'll post more updates through the week.

Sedation and Kevin

Kevin's hair is starting to come out from the radiation. He is a good sport and doesn't seem too concerned about it. He doesn't seem to be losing as much energy as some of the other kids and we think that his throwing up is mostly caused from the sedation drugs. We are hoping he can do the tumor boost radiation without the sedation today. Say a prayer that he can stay still and they don't kick him back to sedation!!! The doctors are pretty negative about him being able to be still for it but I see plenty of kids his age doing it and wish they would be more positive with him.


Rachel

Aunt Kelly & Graceland

Kevin's and Jake's Aunt Kelly came to help for a few days. I really appreciated the extra hands. It was nice to have someone to talk to during the long waits for radiation. She was a big help with Jake. I was able to go back when they have to sedate Kevin and was actually able to spend time with him. I know Kevin & Jake enjoyed having her around too.

Monday was a good day after radiation so we decided to try to do a typically touristy thing while we could (before we have to be careful about going out in public when chemo starts). So we went to Graceland. Kevin was a real sport because he didn't want to go at first, but then he was the one who wanted to stick around toward the end of the tour and listen to more 'stories' about Elvis's life.

Jake started to get up on all fours and rock back and forth this weekend, so we all know crawling isn't far away. He can kind of do the army crawl right now and is rolling all over the place when I set him down. It is kind of weird to think by the time we leave St. Judes he may be walking!

Rachel

Pictures of Family around St. Judes

Finally got an USB connection for the camera. Here are some pictures.

Kevins Last Day at School

http://picasaweb.google.com/dutcheshen/KevinSVisitToSchool

Here are pictures Kevin's Aunt Laura took at school before Kevin left for St. Judes

A Decade of Children’s Environmental Health Research

I found this interesting. I am very curious as to what made Kevin suseptable to cancer. Though this does not give a clear answer I found it a worthwhile read.

Decade of Children’s Environmental Health Research - EPA

I also changed the setting so you do not have to be a registered user to leave a comment. We will see how it goes. If we get spammers (people soliciting for business) I may have to change it back.

Rachel

Fundraisers

I feel a bit odd approaching this discussion but I guess it is better to come from me than someone else. As most of you can probable imagine cancer isn't just a horrible disease with a horrible treatment plan, it also is financially draining on the family. We are facing huge travel costs, loss of one income, unpaid leave, private tutoring for Kevin and additional child care costs we would have not incurred otherwise. We really appreciate all who have been generous already.

Some of our friends and coworkers have put together some fundraisers to help us raise the money needed so none of us have to sell our homes in this horrible economy due to this evil disease. Mike has set up a trust fund for expenses related to Kevin's medical care, this includes family (this includes Eric, Mike, Scotty, Jake and me) travel and hotel expenses to be with him. If you are interested in contributing to Kevin's trust fund please make checks out to The Kevin Saarela Cancer Fund. You can contact Bonnie Gammerath at 248-953-9682 or Mike at michigan_herrs at yahoo.com for more information.

Here are the fundraisers I am aware of:

Big Boys restaurant in Walled Lake will be hosting a fundraiser on Thursday April 3rd. I will post more information as I get it. Bonnie Gammerath can be contacted at 248-953-9682 or via email tfg at provide.net Please put Kevin Saarela Cancer Fundraiser in the title if you email her.


Bryant Bureau/Snelling Staffing Services (Eric's employer)
Bowling Fundraiser Event
Sunday - April 27, at 3:00 – check-in is from 2:00 – 2:30
$20.00 per person* includes: 3 games of bowling (9 pin no tap), shoes and 2 slices of pizza. There will also be: prizes, silent auction and 50/50 drawings.
Fountainview Lanes
34244 Groesbeck Hwy. (S. of 15 Mile).
Clinton Twp., MI 48035
registration forms are available through (or have questions please contact): Sue at snelling-jobs.com or Gail at bryantbureau.net or you can call (586) 772-6452, ask for Judy.

Thank you again to you if you have already helped out. We really appreciate the generosity, the prayers and thoughtfulness.

Rachel

Bingo Night

Tonight was Bingo night at the Ronald McDonald House in Memphis. Kevin won twice and brought back a game called Ants in the Pants and a Spiderman toy. Kevin is starting to eat a little but will only eat Chef Boy R Dee and Hagendas Ice Cream. The Chef Boy R Dee makes me cringe every time he eats it. I know it isn't good for him, but a calorie is a calorie. He is like a pregnant woman, his tastes are changing and he isn't sure what he is going to like one moment to the next.
Kevin is starting to have some of the side affects from radiation, but it is manageable right now. Jake seems to have some sort of bug and I am trying to get a doctor for him, but our insurance doesn't cover more than an emergency room. They have these social workers who are suppose to help with these types of problems, but I was told today that I really should have someone here helping me with the boys. I haven't been more offended in a long time. Like any of us have a choice; or I should choose one child over the other?!? Like I am not accepting help! This is a horrible thing no one ever expects to happen. Yes, I do see whole families here and I am not sure how they do it. There are women here with one child who has a mother or mother in-law helping them. That isn't happening here. It is no one's fault. It is just the situation. I have to deal with it, why can't they? Why does she have to insinuate I choose this situation? I am only trying to get the best care I can for my very sick child. No mother should have to choose one child over the other. Hopefully I am just being overly sensitive because I just want to give her a dirty look for being an idiot.

The Weekend in Review

Eric arrived late Thursday night. So Friday he took Kevin to his radiation appointment and I got to go grocery shopping with Jake. A snow storm hit Memphis Friday afternoon. Eric made dinner of tacos for us Friday evening. Kevin ate 2 whole soft shell tacos!!! Friday evening Mike and Scotty arrived. It was nice to have everyone here. A older brother of a patient came from Georgia to visit. His name is Chandler and Kevin and him hit it off right away. Chandler is exactly a year and a day older than Kevin. They thought that was pretty neat. Scotty of course was included and they ran around and played like normal boys. The only time I noticed that Kevin was the sick one was when they went out to play basketball. Normally Kevin has enough engery to keep up but he played for less than 5 mintues and then sat out the rest of the time Scotty and Chandler played basketball.

We also took the trolley to the Peabody Center and went to Jillians for a family night out Saturday night. Kevin was so worried about missing our stop he forgot to enjoy the short Trolley ride.

Overall it was a nice weekend. I have missed Scotty and Mike alot. I think Kevin has missed having his brother around the most. Scotty and Kev are pretty close as far as brothers go.

Hope you all enjoyed your weekend. I still have no USB to connect the camera to the laptop. Here are some pictures from my cell phone. Sorry about the quality. Most of these pictures are from our first week here. This past Friday marked week 2 for us.

Yesterdays raditation

Yesterdays radiation was in the early am. They were putting Kevin to sleep by 9:15 am and after he started to wake up we made sure to give him crackers and water right away. He didn't get sick this time but he really is having trouble getting his appetite back. I got him a milkshake from Chic-fila (those are the best) and added Whey protein to it. He drank about ½ of it. He had about 5-10 crackers, ¼ a piece of pizza and lots of water.

His radiation is at noon again today. I tried waking him up at 4 am (the last time he can eat) this morning and was only able to get him to eat about 3 bits of pb & marshmallow. UGHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Meanwhile, Back in Michigan ....

Scotty and I are flying down to Memphis this weekend to get the family back together. This video will give you an idea of the craziness that occurs here in Michigan every night before bedtime.

Mike

And the verdict is still out....

Radiation seemed to go okay. While I was in the waiting room waiting for Kevin yesterday I met a kid who hasn’t lost his hair from chemo & radiation. Pretty amazing. He looks great. Most kids lose their eye brows and eye lashes along with there hair and he had it all. So I am going to just keep praying that God allows Kevin to keep all of his hair everywhere and keeps him very healthy through the whole thing.

Kevin did get incredible sick last night but I am not sure if it is because he had to go so long without eating yesterday and when he did eat he was trying to be energetic. (I think he is losing it mentally because he has been away from his friends for so long). Kevin had to have his port accessed yesterday and last week when they accessed it he kicked the nurse several times and yelled and screamed for through the whole thing (at the top of his lungs that we were killing him). So this time I used bribery. Yes, I have been reduced to bribing my son. I promised him a $20 pack of Pokomon cards if he was good to the nurse. In the end he did do better than last week but he still made the nurse ask him over 10 times to turn around. And he did tell us several times that we were trying to kill him but at least he wasn’t screaming. So we aren’t exactly there yet but he did improve. So I told him at the end of it he earned a $10 pack because he did improve but there was still room for improvement. (The nurses all agreed with me on this one). He was not happy at first but then through out the day he figured he still had $8 left from the gift card EPD got him so he was good. As soon as he came to yesterday after radiation he wanted to go to Target and get his Pokomon cards. I tried warning him he needed to go lay down back at our room but he insisted. Sure enough he started feeling quesy at Target and then threw up in the car on the way back. Moms know nothing apparently!!!!! He did continue to throw up a couple more times after we FINALLY made it back but I think he did manage to eat ½ a hamburger and keep it down. Another mom here gave me some crackers and he ate about 10 of them. But that is all he ate yesterday. So I am still not sure about what caused this, we have another around this morning at 8:45 am so we will see...........

Radiation Starts Today @ noon (CT)

Kevin has his first radiation treatment today at noon. He will have a total of 33 treatments over the next 6 weeks. The first two weeks are the whole brain and spine and then after that it is just the tumor bed, aka where the tumor used to be. I have to admit I am so frightened of what the side affects can be. I am worried he will no longer be our quick witted Kevin. I worry about the growth hormones he may have to take after. And I hear his hair is going to thin. Some kids get sick from the radiation some just get tired. UGHH!!! Please pray that God protects his organs, his brain and just kills the cancer. In order to emotionally accept this treatment I have had to accept that if we don’t do this the cancer can come back and give his a slow painful death. It is so difficult to subject my son to a treatment that has such horrible side affects. Kevin also has had a decrease in appetite the last week. It is a battle to get him to eat. He really needs to keep working on gaining weight. Most kids lose about 10 pounds and Kevin is so skinny he can’t afford to lose 10 pounds. Hopefully God will spare him from the nausea and vomiting most people experience.

Yesterday Kevin was so energetic. He misses school and his peers so much. He started the tutoring classes yesterday and was disappointed that there would be no other kids with him, but he was happy to do some reading work. Last night was also Bingo night. Some kids from Central Michigan University have taken an alternative spring break and they are spending the week here volunteering at the Ronald McDonald house. They put on the Bingo game and each kid won at least one prize. It was a nice social event for Kevin. He won 3 prizes; 2 games and a bionicle.

Kevin loves having Jake here with him. He loves to introduce him to people as his little brother and last night Kevin was enjoying making Jake laugh for about an hour. Sometimes when Kevin is worrying about the treatments and what is going on he just likes to try to hold Jake. It somehow comforts him I guess the same way holding a baby comforts adults too.

I will let you know how radiation goes as soon as I have a chance. I understand we won’t really know what Kevin’s reaction will be until the evening. Please keep praying for him.

A post about Jake

I know most of you check in about Kevin, but for our extended family that checks to see what is happening with our little family I wanted to let you know what Jake started doing this past week. He started clapping!! He will clap at people as the walk by us when we are waiting for doctors and such in the waiting rooms.

I hope to get a movie of it & up loaded. But, also, I don't have a USB connector to download the movies and pictures yet either (the joys of a short notice move, not much time to plan what I really need). I maybe waiting for Mike & Scotty's next trip out here before I get one.

Jake also has hit another growing spurt. I brought all 3-6 month clothes and he is working on growing out of them within a week. He eats like we are starving him. He will easily go through two jars of baby food that is always mixed with rice cereal or oatmeal. Yesterday I had a baked potato for lunch; well actually, Jake had the baked potato. He almost finished the whole inside of the baked potato!