Friday, February 29, 2008

Kevin's Good Day

Kevin had a great day today. He was walking upright, not all hunched over. He is working with an OT and a PT (therapists) 2-3 times a week. He actually wrestled with his dad yesterday. He hasn't done that in over a month. I am so appreciative that he is getting one normal weekend before the radation starts. There is another little girl here with the same thing as Kevin & she is a couple of weeks ahead of him in treatment & she is having a really rough time. Her name is Heather & I am sure her mom would appreciate any extra prayers.

All of Kevin’s tests came back negative so that means they have classified him as a classic average risk Medulloblastoma. So the plan is to give him standard treatment. It is the treatment part that is very frightening (after the intial diagnosis). If you are praying for him, please pray that Kevin responds well to treatment, that the radiation and chemo don't damage his body but only rid his body from any cancer so there is no relapse; I would really appreciate it.

Thank you,
Rachel

Thursday, February 28, 2008

Address for Kevin

Here is the address if you want to send letters or packages to Kevin.
This address will be good for the next 6 weeks (until April 14).
================================================
Ronald McDonald House
Kevin Saarela
Room 22
535 Alabama Avenue
Memphis, TN 38105
============================================
Currently Rachel, Eric, and Jake are staying with Kevin. They moved into the Ronald McDonald house on Tuesday (Feb. 26), filling the Taurus X with so much stuff that there wasn't room for Jake and the stroller! Rachel and Jake had to take the shuttle bus over the the Ronald McDonald house separately. (It's not on the hospital campus, maybe 1/2 mile away.) That same day Scotty and I drove back to Michigan in 12 1/2 hours through rain and snow. Scotty is a great little traveler.

Kevin is undergoing a repeat of all the tests he had done in Detroit. New MRI scans, another lumbar puncture (spinal tap), and other things. The doctors here have some equipment that is more advanced, and they just want to make sure nothing gets overlooked. We are encouraged because it seems that Kevin's primary care docter here at St. Jude (Dr. Gajjar) knows the neurosurgeon who removed Kevin's brain tumor in Detroit (Dr. Sood). That should facilitate communication between the two hospitals.

I am very impressed with St. Jude's. The facility is amazing, especially with the addition of the new Chili's Care Center (where Kevin has been spending a lot of time). The people here go to great lengths to make Kevin and the rest of the family feel comfortable. The doctors dedicate long sessions to answer our questions. The radiation oncologist (Dr. Pai) even pulled up Kevin's MRI scans from Detroit and explained what they show and what they are missing (thus the need for supplemental MRI scans now that we're in Memphis).

So a radiation plan has been developed. They will radiate Kevin's entire brain and spine for two weeks starting next week (March 3). Then they will localize the radiation specifically on the tumor site for the remaining 4 weeks. All told, there will be 33 days of radiation therapy with a schedule of 5 days on, 2 days off. Each treatment will last only 15 to 45 minutes (longer for full brain and spine, shorter for just the tumor bed). The only immediate side effects will be fatigue and hair loss in the small area where the photon beam enters his head. The longer-term side effects will be cataracts in his eyes, high frequency hearing loss, reduced output from his pituitary gland, and reduction in overall intelligence. Maybe some other things that I can't remember. All pretty bad stuff.

The immediate problem we are having has to do with Kevin's port. The port was put in the middle of his chest (under the skin) and it runs right into a main artery then into the heart. It's there mainly to deliver chemo drugs, but can also be used for drawing blood. The problem is that this port is rather large and it sticks out of his chest. For the radiation treatment, Kevin is supposed to lie flat on his stomach. But it hurts to lie on the port. They tried putting a donut-shaped pillow around the port to ease the pain, but it's not working. Kevin is way too tense and bent over from fear of pain. If he even moves 1 millimeter during treatment, the radiation will not go where desired and the treatment will be compromised (not to mention the radiation might go someplace where it will do damage). So he will have to be sedated during the radiation treatments. This is not desireable, because he can't eat for 4 hours before the procedure, then he'll feel nauseous for hours after the procedure. Rachel, Eric, and the nurses will continue to work with Kevin to try to make him comfortable on his stomach, but we are a long way from that right now.

Mike

Sunday, February 24, 2008

Memphis

The family is all here in Memphis. Mike, Eric and Scotty all arrived LATE LATE Friday. Technically, Saturday morning around 3 am EST or 2am CT (local time). It worked out to be about a 13 hour drive, and no one got spared from ucky weather. Yup, I don't thinking anyone will be really up for that drive just for short weekends.

I am still working on living arrangements. There was a big college basketball game in town this past weekend (something about Tigers and I am not sure of the other Tennessee team) but none the less there were no hotels available within a reasonable radius. By the grace of God, when my parents, Kevin, Jake and I first got here Thursday night we had to check in at St. Jude. While I was filling out all of the paperwork another couple with a baby came in to check in. The mom started talking to us about Habitat for Hope. Her name was Rachel, her husband's name was Mike - what are the odds of that? So Habitat for Hope has put Mike, Scotty, Jake & I up in their guest rooms of their personal house. They are a Christian outreach that is run by a family. You can read their story via the link. Eric and Kevin have been staying at the hotel run by St. Jude’s.


We all (Eric, Mike, Kevin, Scotty, Jake, and I) went to church with our host family. Kevin's class wrote down prayer requests. He wouldn't let anyone read his. His Sunday school teacher seemed very nice. Scotty learned about living water.

I need to make some dinner for these troupes. Tomorrow is a long day at St. Judes. Dr. Gajar wants to meet with all parents. We start at 8 am have an hour lunch and end at 4 pm. Hopefully the kids make it!!!!!!

Friday, February 22, 2008

Journey to St. Jude...

Hi Everyone!

Rachel, Kevin, Jake, Grandma and Grandpa Skousen joined to St. Jude this week. They left Wednesday evening and stayed with family in Ohio. Thursday they were on the road just in time to get stuck in the middle of an ice storm in KY.
They finally arrived at St. Jude at 23:30 Thursday evening. They would have been there a little bit sooner except they had a hard time finding it. From what I was told... They were able to see the building from the highway but unable to find the street - gotta love MapQuest... The directions had them looking for the wrong street...

Today Kevin had a MRI but not just any MRI... During this MRI, Kevin was shown pictures while the Doctors mapped to see what parts of his brain were activity. Sorry I forgot what the technical name of this MRI is but... that is why I'm not a doctor :-) Unfortunately they were not able to finish the MRI because as Kevin said the MRI 'blew up'... There was a mechanical failure with the MRI during the testing.... so they will have to repeat it...

In the meantime, Rach is trying to make sleeping arrangements for the family. St. Jude only allows for 4 family members but they have five. For whatever reasons, Jake is counted as if he was an adult... someone please explain that one to me??? Because I'm clueless as to how a 5 month old can be counted as if he was an adult... St. Jude is allowing them all to stay for the week but Rachel is trying to find something for the rest of their time there.

Rachel said that she would hopefully have Internet access soon. In the meantime, I'll be updating the blog as I receive information...

Please continue to keep Kevin in your prayers :-) and thank you for all the support and help. It means a lot to all of us.

Love,
Aunt Becca

Tuesday, February 19, 2008

Whirlwind

I only have 5 minutes to type up this update.

- Kevin’s spinal MRI came back clear, so it looks like no tumors on his spine.

- St. Jude’s called today and invited us to come down Thursday!!!!

It has been crazy today. It is bittersweet. It looks like Kevin, Jake and I will be gone for 7 weeks, come back for 3 weeks and then be gone for another 4 months. I am going to miss Mike and Scotty so much; hopefully they can make it down every weekend. I can’t imagine not having those two around all the time. I think Eric will be there are much as he can too. I haven’t even thought about how we are going to pay for all of the travel expenses and where to stay. St. Judes will cover up to 4 people including the patient, and we are easily over that on the weekends, but I am hoping (praying) when I get down there something will all work out. I can’t even think straight at this moment. We are meeting a bunch of people at Zap Zone at 7 pm tonight as a little farewell for Kevin. If you read this before 7 pm you are more than welcome to join us. It is $12 a person. It is the one in Farmington on Grand River west of Orchard Lake(northwest corner, near Big Lots).

Monday, February 18, 2008

Lumbar Puncture tomorrow (aka LP or spinal tap)

Tomorrow we have to be at CHM bright & earlier (7:30am) for Kevin’s spinal tap. This test will tell us if the cancer has spread to his CSF (?). I love it when dr.’s try to reassure me that everything will be fine, the test only carries a small risk….I understand, but I am still uneasy about it!!! Please say a prayer that this test won't harm Kevin and that he will be spared from the pain. I am really worried about this.

Hopefully tomorrow we will hear the results from Kevin’s spinal MRI too. Kevin got really sick from the sedation drugs they used on him Sunday. He couldn’t eat all day & when he could eat, he couldn’t keep it down! ;(

Scotty is trying to understand what is happening to his big brother. I can see he feels very overlooked right now and really wants my attention, or just to cuddle, when we are home. Today Scotty was a huge help as I had to take all of the kids with me as I gathered copies of Kevin’s medical records to ship to Tennessee. He carried a box in and helped Kevin get comfortable while they waited for me to make copies. BTW – Grammie & Pappy we also shipped out a box to you too.

Need a Prayer

My ped is working on getting slides of Kevin's tumor to St. Judes by this Wednesday. It has to be there by Wednesday in order for him to be considered for treatment there.

Sunday, February 17, 2008

Sunday starts another week of getting poked for Kevin

Today Kevin has his Spinal MRI to see if there are any tumors on his spine. He will be put to sleep for the test because it takes 2 hours. Please pray that the test results are clear for the doctors to read and that they are negative for more cancer growth. Kevin’s lumbar puncture was suppose to be on Friday but I luckily learned on Thursday that they were hoping for an opening at 9:30am this past Friday, there wasn’t really actually an appointment. So it is now set for Tuesday. Hopefully this one is for real.

I am trying to pull Kevin’s medical records from CHM to get a couple of second opinions because as I like to say, its not like Kevin just has the flu. But for some odd reason CHM has not updated his file at all since Feb. 4th. So his last CT scan is missing, there is no operative report for his operation on Thursday Feb. 7th. Which is odd, because when I went to pull his records on Feb. 4th I was able to get his operation reports and everything else. I can see difficulty ahead.


I was really concerned and quite honestly upset with our pediatrician when Kevin was first admitted to the hospital. I felt that they weren’t interested in handling Kevin as a patient. I really felt that they had abandoned me to navigate all of this medical crisis alone. But the doctor who owns the practice has really recently step up and given me the most reassurance that it will be me, not any doctor, who will know what is best for my son. I really appreciate the Saturday afternoon phone calls she made to help me try to get Kevin’s records and talk about getting second opinions.

A couple of moms, from around the country, who’s children were also diagnosed with medullo have contacted me and are helping me understand the different treatment options and filling me in with their experience (and also a local friend who attended Medical school - thank you Abi!). It is helping me emotional get a grip and keep things moving forward for Kevin. As I have learned the hard way no one else will be a better advocate for Kevin but his own parents, and moms are good at becoming experts when their childs life is at stake. The more educated we are the better decisions we can make. Radiation is the scary thing because it can reduce a childs IQ as much as 25% but it is the only thing proven so far to kill off the cancer for good. If this cancer that has invaded Kevin’s body comes back, from what I understand, it will most certainly be lethal. Right now, hopefully we have a chance of saving him.

Friday, February 15, 2008

Happy Belated Valentines


Hope you and your loved ones had a good Valentines Day. Thank you for all your thoughts and prayers. We really appreciate it.


video

Wednesday, February 13, 2008

I Miss My In-laws



Last week Mike’s parents were here to help with the other two kids. Now that Kevin’s home, it feels like I have 2 infants and a preschooler. I love having him home, but it is very demanding. A neighbor has been a tremendous help and my MOPS groups has been great with sending meals which is helping make this all the more bearable. I think that is helping me not lose my mind.

70-80% Success Rate in about 15-20 Patients Per Year. That was the statistic I was given when I looked into CHM’s success rate with treating medulloblastoma. Sounds positive? Not if it is your child’s life. To me, that means they lost a little more than a couple of children with my son’s diagnosis. I don’t want my son to be on that end of the statistic. I want to know what I can do differently than the parents who lost their children to make sure my son makes it through this. I have read that girls seem to do better than boys through this. Hmmmm….my son is a boy. Okay, I can’t change that he is a boy (and wouldn’t), but still what can I do to make sure he survives this? I am searching for the answers to this.

Well the baby is up so I only have a few spare minutes left. Here are some pictures from when Kevin was in the hospital and the boys with the Webkinz and stuffed animals they got. Kevin & Scotty send out a BIG THAK YOU! to everyone






Monday, February 11, 2008

Finally Some Good News!

4 surgeries, 4 procedures (2 MRI’s, 1 CT scan and a bone marrow test) and we have our little Kevin home for a couple of weeks!! Kevin is tired & uncomfotable with the Broviac port in his chest and has spent the last two days curled up in the fetal position. He really worried me yesterday but the doctor has reassured me it takes 4-6 weeks for him to get used to his shunt and he probably is really feeling the pain since they stopped the morphine. We did get some good news today! Kevin’s bone marrow test came back negative so no cancer in his bones!!!! Friday Kevin will have his Spine MRI and lumbar puncture to find out if any of the cancer has spread to his CF or spine. I am exhausted more than any new baby has done to me.

Today two people from Orchard Grove church came to visit Kevin. He wasn't much into visitors at the time, but I was able to eventually coax him into opening the gifts they got him, he LOVED the Simon Says game and played it until the physical therapist insisted he put it down for his therapy session. It totally cheered him up along with all of the posters the kids did in Kids World. He also loved the movie Eragon (sp?) that the Glengary PTA included in their goodie bag. Thank you so much for being apart of Kevin's healing process.


Kevin may go back to school next week. It won't be full days at first and this isn't for sure yet but if he does, if your child goes to school with him you may want to prep them. Kevin has a large, very noticeable 'bump' on his head where the shunt is and a lot of stitches on his head. Right now his hair is shaved rather oddly because they 'are surgeons, not hair stylist.' Hopefully my sister Leslie (who is a hair stylist) can fix it tomorrow. I told him if he wants a mohawk for now that would be fine. All of his hair will be falling out eventually so we might as well make this as fun as possible. Kevin may also require a wheel chair as he is pretty weak. I think the physical changes will be the hardest for the kids (it is for me). I am worried about how the kids will react to him, but I also feel like he could really use a break from this very adult world he has been thrust into.


Thank you for all the prayers, it was so nice to get some positive news in all of this darkness.
Rachel

Saturday, February 9, 2008

Friday

Kevin is very uncomfortable. He has the port for chemo in the middle of his chest, his head is still bleeding from the shunt they put in. I don’t think the stitches were done very well. He gets mad sometimes and then starts crying saying he doesn’t want to be a ‘jerk’ to others. He has every right to be mad, angry and depressed. But as he said the other day, ‘mom, getting angry doesn’t get me anywhere.’ He is so smart for seven. This is very scary. I told Kevin today that the disease we keep referring to is cancer. Sometimes when he is in a lot of pain he yells at us that we are trying to kill him. When he is calm I do my best to reassure him I am doing everything I can to save his life.

I am working on getting him fatted up before Chemo. Lots of high calorie, high protein food. I am trying to get him to drink Ensure as much as possible. If anyone has any ideas on healthy foods/meals that are loaded with calories and protein please share!!!

We meet at least a dozen or two specialist, social workers, etc. that I guess we will be working with as we go through this whole process.

I am starting to not cry as much and focus on what needs to be done to get Kevin through this. But there are moments where I just long for the time when I thought I was so blessed to have 3 healthy children. It looks like Kevin will come home for a couple of weeks, maybe as soon as next week. Each day with him is a blessing. I guess none of us have a guarantee.

rachel

Friday, February 8, 2008

Treatment Plans

The treatment Children's Hospital wants to give Kevin involves him going back in the hospital 5 days a week for 6 weeks after being home to heal from all the operations for 3 weeks. Then after that he will be in the hospital for a week once a month for treatments. It is considered a clinical trail. The actual name of the clinical trail is Comparison of Radiation Therapy Regimens in Combination With Chemotherapy in Treating Young Patients With Newly Diagnosed Standard-Risk Medulloblastoma. I found a hospital in Toledo that is participating in a clinical trail which uses stem cell treatment. I am going to look into that because it sounds like it uses less radaiation. The name of that treatment is Combination Chemotherapy With or Without Etoposide Followed By an Autologous Stem Cell Transplant in Treating Young Patients With Previously Untreated Malignant Brain Tumors.

A Day of Surgery

Kevin had the shunt put in along with a port for the chemo and some marrow taken for testing. It was a long day and the poor kid is back to being in alot of pain.

We have a meeting with the oncologist to discuss treatment. We just have to find out how aggressive his cancer is. I am trying to figure out if the treatment plan Children's is offering is really the best for him.


Rachel

Wednesday, February 6, 2008

Medulloblastoma

You are probable wondering 'what is Medulloblastoma?' It is a type of cancer that Kevin has. The Neurosurgeon who did Kevin's surgeries is at a conference right now and won't be back until Monday the other neurosurgeon wants to give up on trying to get Kevin's body to process the CFS (aka brain fluid) and just put a shunt in tomorrow. He will also need to get a port inserted into his chest for Chemo. I am very scared they are doing operations without fully investigating. We were originally told they were going to challenge his EVD over a couple of days. They gave it less than 24 hours. From what I have learned tonight a shunt will more than likely fail within the first two years and carries a risk of infection. There is another procedure called third ventriculostomy, I am going to ask tomorrow morning why they aren't considering this.

I had to pull Kevin's MRI's CT scans, list of procedures and pathology for insurance purposes and decided to read it over before sending it to the insurance company. I feel like I am getting more information from pulling his info than from the doctors.

Okay, happy stuff! Kevin was begging most of the day to go down to the library. He walked down there with the assistance of 3 physical therapist (1 therapist was training the 2 others). They took the walker, but Kevin on the way back said he didn't need it. I am so happy he has this determination. It is his determination that gives me most of the hope.

Rachel

Losing Track of Days

I don't know how many times I ask someone 'what day is it'?

Well I think today is Wednesday. Kevin mostly had great day yesterday. He got in a wheel chair to go to the library on this floor and get some books. That was awesome! He is facing one set back, it isn't looking good that his head will start processing its own fluid the way it is suppose to. If God doesn't will for his little brain to start taking over again, he will have to have another brain surgery. We might end up back at square one.

The his pathology is suppose to be reviewed today at the Tumor board. Hopefully today they will confirm what was said to us about the tumor after his last surgery.

We have run into some issues with our now old peditrician but hopefully I have it almost resolved and have a new one on board. I don't have time to worry about what to do about that yet.

I am sure the rollarcoaster ride is far from over. I appreciate all of the offers of help, I am not sure how I could do it without all of the help because I still have to be mom to Jake & Scotty too.

Everyones gifts and cards make a HUGE difference. It is so nice to see him laugh at the jokes the boys from his class wrote in their cards and the hearts and love the girls sent certainly made him blush. Kevin misses school and home so much. He is very brave and strong and all the love and support only makes him stronger and more determined to beat this and get home.

Thank you!!!
Rachel
(mom)

Sunday, February 3, 2008

Day 5....

Hi Everyone, Kevin is started to feel a bit better. He wasn't in as much pain today as he was yesterday. Kevin was able to move his legs up to his chest to scratch an itch this evening. He's been having a lot of itches lately; mostly due to the pain killers he's on (he's been heavily medicated lately). But moving his legs is a big improvement from yesterday. Kevin also was able to eat some real solid food for the first time (if you call hospital food real food); He ate an ice cream scoop size of Mac n' Cheese. Kevin keeps asking when is he going to be able to come home. He says that he can't remember what home is like. Speaking of the home front... The neighborhood has been kind enough to all chip in to buy Kevin some Webkinz - 30 so far but the plan is for him to receive a few a day. Today he received 7. Kevin was sssssooooo happy to receive them that he flashed a weak smile and said "Tell everyone that I said thank you" in his small weak voice. The Webkins have been Kevin's focal point. We are finding that it helps to ease the pain without medication.
We would also like to send out a big "Thank You" to everyone for all the support!! It's wonderful to know that there are so many people who care and are willing to help. We can't make it through this without you... It's going to be a long process.

Love,
Aunt Becca

Saturday, February 2, 2008

Kevin in the Hospital

February 2, 2008 @ 9 pm

Kevin is doing well. He's speaking and wants to eat, but mostly he's sleeping. In the 24 hours since his surgery I'd say he's slept 23 of those hours. Rachel and I stayed with him all last night, but I could hardly stay awake. I'm not much good today, either. Rachel hasn't slept more than 1 hour in that time, but somehow she's still going strong.


I am attaching a picture of Kevin at the present time. He looks pretty much the same whether he is awake or asleep. All of the doctors and nurses are impressed with his progress. He has conversations and recognizes voices (doesn't open his eyes much because he has a little double vision). All his vital signs are strong and he has movement and feeling in all his extremities. We read a lot of books to him which seems to preoccupy his mind and and keep him relaxed. (He has always liked being read to.)

He is beginning to eat solid food again, though we are easing into that slowly. He will have to stop eating tomorrow morning, again, because he will be having a second MRI in the afternoon.

Kevin has a private room and we have decorated it with all sorts of pictures, cards, and posters so that Kevin feels at home as much as possible. His brothers came to visit him today, though both have coughs so we limited their exposure. The most comforting thing for Kevin right now is the trophy he won for coming in third at the Pine Wood Derby that was held today. Even though he couldn't make it to the race, Eric took his brother Scotty and raced the car against the rest of the pack. Eric took video of Kevin's car winning one of the heats. Kevin loves to watch that. I'll attach a picture I took of Kevin's car two days before his surgery.

Mike



February 1, 2008 @ 10 pm

The surgery is over and everything went well, but the neurosurgeon is convinced the tumor is cancerous. We won't know for sure until the results come back on Tuesday from the biopsy of the tumor, but this surgeon has a tremendous amout of experience with this type of brain surgery and he is convinced Kevin will have to undergo chemotherapy. The great news is that the tumor had not spread into the brain tissue. The surgeon was able to scrape off the malignant tissue from the brain tissue. But there is still microscopic malignant tissue remaining that can only be killed with chemo. I still can't believe it. This is crushing news for Kevin who wanted this to be over today. But now it turns out we are only at the beginning. The whole family is here to support each other. I'm a wreck.

Mike


February 1, 2008 @ 4:30 pm

We are Children's Hospital in Detroit. Kevin went into surgery at roughly 2 pm. The surgery is expected to last 6 hours. So far everything is going well (we just got an update about 2 hours in).

Kevin has a golf-ball sized tumor in the back of his head. We don't know if it's grown into his brain tissue or not. We don't know if it's malignant or not. We won't know that until 3-4 days after the surgery. We are hoping that it can be removed without any loss of brain tissue. That part of the brain is linked to fine motor skills. Now that we know about this tumor, is explains a lot about Kevin this past year. It explains not only the headaches, but also his trouble with fine motor skills and even the mysterious, spontaneous vomiting spells he's had over the past year.

Mom, Dad, grandparents, aunts, uncles, and friends are all here hanging out in the 2nd floor lounge area. We also have a room at the Ronald McDonald house. We don't know how long Kevin will stay here, but right now we are assuming weeks.

Rachel is doing well today ... much better than yesterday when we found out about all this. But she--like Kevin's father Eric--is not sleeping or eating much.

Many people are asking about Scotty and Jake. Scotty is staying with friends and only knows that Kevin is in the hospital. Jake is at home with family and friends.

Mike