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

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

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

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

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)

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

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

On the Move!

I was hoping my last baby would stay a baby a little longer so I could enjoy it a little longer, but it seems that is not meant to be. For the first time ever Jake rolled all the way over. Yes, he is now offically mobile & can roll himself right across the room should he choose to do so. Monday we also went to the Auto Show. Everyone tired out pretty quickly this year so we only made it through Ford, GM & the mini's. Scotty loves big trucks! Here are some pictures. Kevin spent MLK day with Grandpa & Grandma Skousen at the IMAX and the muesum.

Belated Merry Christmas!

Christmas was the usual crazy busy. We left the day after Christmas for Virgina & enjoyed almost a whole week with the rest of the Herr clan. It is a trip Kevin & Scotty look forward to every year. They love their time with Grammie & Pappy, Jack & Sam and all their aunts & uncles. The highlight was meeting their new cousins Dylan (4 wks older than Jake) & Liam (2 days older than Jake). It was babies everywhere!!! Mike & Scotty have gotten into making balloon things... I don't know how else to describe it. I got Mike some professional balloons for Christmas, just in case the whole auto industry doesn't work out and we need a plan B. Kevin likes to look up ideas for Scotty & Mike to work on (future boss in the making). Here is a video to give you an example of the crazines that lives in our house.

Tagged

Seven random things about the 'Queen' of the Michigan Herr's


1. I LOVE being a mom. It is the most challenging, patience building, love fulfilling job I have ever had.

2. I feel blessed to have all boys. Though I do worry about the type of world they are growing up in, the type of influences around them and the types of opportunties they will have as adults. Nothing makes my day like their smiles and small successes though.

3. I wakeboard but I don't snowboard, never quite picked it up. Odd?

4. Family is really important to me, but housekeeping?!? I am not so good at yet.

5. I have this drive I can't explain for family history, gathering, puttng it together, etc.

6. I like to share the fruits of my labor & make sure no one is left out.

7. I have an 600sq ft. organic garden in my backyard that I share with some friends.


I am going to 'tag' Becca. Bec ~If you get to it, you get to it. If not, no biggy.

Skiing

I only have a minute or two...lunches for school (that somehow wasn't cancelled despite the snow storm) still need to be made & it is late.

The boys went skiing. Kevin really has his eye on snowboarding....maybe next year. This is their 2nd time ever going...but Mike bought ski's for them Saturday so I am sure there is more skiing in their future!

Visiting Santa

WE FOUND THE REAL SANTA...! For those who were looking for him, he sems to be hiding out at Henry Ford Museum in Dearborn, Michigan. Don't ask us why he choose Dearborn but we are glad we found him! He gives the best presents just for visiting him (little Ty Christmas mouses). Really this was the BEST Santa experience ever (and I have 33 years of experience in this Christmas business).

Here is a movie of the kids visiting with him today. Kevin was so nervous about meeting the REAL Santa (he knows there is a lot of fakes out there....7 year olds know EVERYTHING already).

Thanksgiving

Before thanksgiving dinner Scotty & I had everyone write down what they were thankful for on a turkey feather, then we put the feathers on our turkey.

Hope everyone had a good Thanksgiving!

Thanksgiving Program

Things are very busy in our house since the arrival of the new baby. He cries alot and seems to get overwhelmed easily...never a good thing if you have two very active older brothers. White noise seems to help a little. Swaddling doesn't seem to help. Looking for ideas.....or hope.

Kevin @ Gymnastic's

Fall Fridays

continued...

>Here are more pics of the boys. It was a week of parties. AKA lots of candy. I secretly donated a majority of it to hubby's coworkers. Though I think he did his fair share of 'getting rid of it' ....

Hope to see everyone in their costumes when I FINALLY get to catching up!

Thanks for checking in on us.

A Peguin, Incredible Hulk and a Nija all went to a party....

And got LOTS of candy......

Jake starts to coo

Jake smiled back for the first time yesterday and over the last couple of days we have heard a couple of coo's out of him. Scotty is really enjoying preschool, espcially Fridays on the Tumblebus. Kevin is a full of energy, especially when they have in door recess. He was all bounces and jumps when he came home from school yesterday.

Grammie & Pappy came to visit

Grammie and Pappy came to meet Jake and visit with Kevin and Scotty (us too but we are old hat). The kids loved having them around. Jake doesn't really do much yet except eat, sleep and need to have his diaper changed.

Scotty is getting more gentle with Jake it seems as time goes on. And Kevin (along with all of the other neighborhood boys) are just delighted to have a baby around. All is good here...now if I could just get some decent sleep!!

Sarah's New Dog

Aunt Sarah's new dog is a hit!!! Both Rebecca and I had our new babies within days of eachother and Sara, was not going to be left out of the maternal stuff...so she went & got a dog!!!! My boys love the new dog!

Jake is here!

Lobster Wrestling

Saturday

It is HOT!!!! Some people think it is a no good, nothing can go right kind of day....can't you tell by the pictures????

Labor Day Weekend

Scotty figured out on his own how to make balloon animals after watching daddy make a few. While daddy was talking to Grammie on the phone he sat down with a balloon and started twisting it this way and that. Low and behold he had made a balloon doggy without any assitance!!!! Here he is pictured with his first balloon animal.

Mike and Scotty took up lobster water wrestling. The new inflatable toy was lots of fun for all!!

Kevin danced up a storm with his Aunt Laura and cousin at Uncle Brad's wedding.

Grandpa even got in on the lobster water fun on Labor Day.

Busy Last Days of Summer

We have had lots of summer fun on the lakes around our area. Here is a picture of Scotty and his friend at our friends beach.

My stepbrother Steve was married yesterday. It was a perfect day for an outdoor wedding. Mia is from Estonia. Her and Steve dressed in traditional Estonia celebration outfits. Wondering where in the world is Estonia? Here is a map. http://en.wikipedia.org/wiki/Estonia

The small reception was held on the Queen Mary II.

Today Mike and Scotty did a little painting around the house. Here is what that looked like....

Mommy's Pink Fuzzy Slippers

Scotty is really curious about what life is going to be like after baby, he has even taken up watching a Baby Story on TLC. He calls it the baby TV show. We have discussions all the time now about how to hold a baby properly, what to feed him (not lunch meat!!!), and the fact that mommy will have to go to the hospital for a couple of days. He and Kevin have been really curious about how in the world is that baby going to get out of mommy's stomach?? To which, when they watched TLC they immediately related it to being a little like having a painful bowl movement. It was getting difficult to explain it to them until they watched a Baby Story for the first time. Then the light went on and I have yet to get that question for the 51st time. Now they are more than happy to tell any stranger... "Mommy is going to have to poop this baby out!" followed always with some giggles. Ahhh...boys....

Kevin isn't as curious; he kind of has the 'been there, done that' attitude, with the exception of the science part of it. How did it get there? How big is he now? Even though I don't think he remembers when Scotty was a baby because he was just 2 1/2 himself; he seems to have a pretty good idea that this is going to a huge change and he isn't so sure he is going to like it. I am sure this will be a major transition for all of us since it has been so long since we had a baby around.

School is right around the corner and I find myself trying to get everything ready all at once. Kevin will be going to a new school this year and Scotty will be going to Pre-school for the first time ever. He has been going to daycare once or twice a week, depending on my schedule. I am hoping this baby will hold out until at least the 2nd week of September, if not a little later. I am just bracing for him to come the first day of school!!!!

It feels like a hot summer to me. We have been enjoying swimming and the lake, but I am not so apt to take the boat out on my own during the day this summer as I don't feel like a safe boat driver right now.

The past two weekends

more favorites

Some of my favorite pictures from this summer

A little piece of Heaven on Earth

This isn't really family related, other than it is the view from across the street from us. Who says heaven isn't here on earth?

Thanks for checking in on us!

Some tubin fun

Kevin has taken an interest in tubbing! He is also helping Scotty get brave enough to try it out, at low speed of course! We are so excited!

Time has flown by!

The whole nesting mode has really set in for me. I am cleaning out the house, lots of trips to salvation army!


Kevin and Scotty have been enjoying their summer. The beginning of July we joined the Virgina Herr's (Grammie and Pappy) and Forest (Mike's sister's family) families for our annual beach vacation in Maryland. It is something our two boys (especially Kevin) look forward to each year. Lots of fun was had with cousins, Grammie and Pappy and Daddy who is the biggest super hero of them all because he can think up ways to entertain 4 boys like no one else I know!!!

Last week Kevin and Scotty went to an All Sports Camp together. Kevin made a new friend and Scotty just thought it was cool to have his older brother with him. This week is back to the normal routine for us.

The baby is growing and seems to be progressing fine. I came down with the flu over the weekend and ended up at the hospital for dehydration. I felt much better after the IV and anti-nausea meds. I am always amazed and how much better my complexion looks after having an IV. But then dehydration does nothing for the complexion itself and any re-hydration is going to make it look better I guess. ;-)