Brew Crew

Long Overdue

2011-03-24T08:08:00.005-05:00

lunch date with mom at chick fil a

circle time at school

This update is definitely long overdue. Facebook has certainly become the easier way to communicate and keep in touch with people, but we decided it was probably time to give a more detailed update on what’s been happening with Sarah on the blog (realizing there are some that don’t use facebook).

This past Feb 8 was the 3 year anniversary of when we got the news that Sarah had cancer. We spent the evening of Feb 8 remembering all the details of that day…the weather, order of events, our first and second phones calls after the news came, where our other kids were, etc. It was a good experience for us, reminding us that God is still God and he is still good, even in the difficult times. He has brought Sarah through so much in her short little life.

Sarah continues to improve physically. The OMA disorder still affects her balance and coordination daily, but she is improving nonetheless. She still goes to Hopkins once a month for a 4-5 hour infusion of IVIG. We have found that this drug helps keep her immune system stable, thus making her symptoms less severe. This allows her to focus on other things other than her physical needs.

This school year Sarah has been enrolled in PEP (pre-school Education Program) in Montgomery County Public Schools. This has been a wonderful experience for both Sarah and for us. She is learning so much and we are seeing improvement in many areas, especially speech. For example, at the beginning of the school year, Sarah was only using 1 and 2 syllable words, and not putting sentences together. Now, after 6 months of this class, her speech has improved drastically. We can’t get her to stop talking at times! Her class is made up of only 2 girls and 5 boys, which has allowed her the opportunity to make her own friends. She has a “very best friend” (as she would say) with a boy named Theo, and they are too cute together!

Another symptom of her OMA are her frequent irrational angry outbursts. We have noticed that her outbursts have become more frequent and more irrational, so we asked the doctor about it. He gave us a long and helpful explanation. We know that Sarah’s cerebellum was indirectly affected by the cancer. The cerebellum controls muscle coordination and balance, which is why she has the physical challenges she does, but it is also involved in the ability to concentrate, and control emotions and behaviors. I was discussing Sarah’s tendency to be fine one minute and then be angry for an irrational reason the next. He explained that they would see this kind of behavior in people with cerebellum injuries or tumors. He also told us that Sarah will always have academic challenges. He is really happy that she is doing well in school because he wants her to have the feeling of success now so that she likes school, so when it becomes hard she won’t give up. I think this talk with the doctor was the first time that it really hit me that these symptoms may never change. We’ve heard that before, but in the back of my mind I think I’ve always thought she would outgrow these kinds of behaviors. The reality is, we just don’t know, but the doctor reminded us once again that these are going to be life issues for Sarah, and they aren’t going to go away. It was good to get direction about her future, but discouraging at the same time. I trust you understand those emotions.

Thank you for carrying us on your hearts these last three years. I was talking with the nurses yesterday and we were remembering when we first brought Sarah to Hopkins (the date of her diagnosis…Feb 8, 2008). At that time, she had completely lost her ability run, walk, and was not even able to sit up on her own. Those were dark days, but God has brought us through. We are so grateful for modern medicine and for all the doctors, therapists, teachers, and nurses that the Lord has provided for Sarah these last three years.

There’s a lot we don’t know suffering. But there is far more that we DO know about God. We chose to remember what we DO know. God is still God, and God is still good.

Thanks for your prayers and friendship.

silly faces with daddy

happy to be riding in daddy's truck

Tinkerbell

2010-10-14T19:15:00.000-05:00

After watching the Tinkerbell movie, the kids are talking about wanting to be able to fly. Caleb and Mikaela really want to fly so they can go talk to Jesus. Caleb wants to ask Him if he can have candy for dinner. Love it!

School days

2010-10-12T12:03:00.003-05:00

Everyone's first day of school!

Alethea- 3rd grade

Mikaela- 2nd grade

Caleb- kindergarten

Sarah- preschool

Anyone out there?

2010-09-21T08:38:00.005-05:00

Well, it's been 7 months since I've posted. (Thanks Helen and Ang for the reminders) I know it's hard to believe but I really do have a good reason. Back in February we bought a new home. Pretty much all our free time went into totally redoing this house. Actually I should say all of Dave's free time. If we could have picked the perfect home for our family, this would be it. We are so grateful to the Lord for providing this home for us. A lot of land, minimal stairs for Sarah, close to church, and friends. It is the perfect house, but needed a lot of updating. Hence the lack of posts. I was just trying to keep my head above water. I have lots of before shots, but unfortunately our camera is not working right now so I can't take any after shots. I promise I'll try to post more, and if I don't, feel free to keep bugging me! There should be plenty to blog about with four kids in school!

It's that time again!

2010-02-18T09:40:00.004-05:00

We would love to have you join our team for the Believe in Tomorrow Port to Fort Walk. Check out this link for more details.

2 year anniversary

2010-02-08T17:28:00.003-05:00

Above: Sarah exactly two yrs ago

Two years ago today was the worst day of our lives, the day when we were given the results from the MRI indicating the presence of a tumor near the spine of our little girl. Its been a remarkable two years, one filled with tons of emotions, God's nearness, great friends and amazing family. Two years ago, I wrote the following entry:

"Some of this news you may already know, and some you may just be hearing of. Jen, Sarah and I just returned from Pediatric Oncology at Johns Hopkins in Baltimore. We were referred there immediately after an MRI at Shady Grove Adventist hospital revealed 2 tumors in Sarah. We went to SG earlier this week because Sarah was showing symptoms of digression in her motor skills, like walking and balance. We went right from SGAH to JHU. The doctors at JHU are some of the finest in the world. And despite being in high demand, we sat at length this evening with three doctors who specialize in pediatric oncology and they showed absolutely no sense of hurry, making us feel like we were the only cancer patients in the whole place. We left very grateful to God for the gift of medicine and very grateful for the oncology department at JHU.

It is most likely that our little girl has cancer, a form known as neuroblastoma. This is cancer of the peripheral nervous system. One of the tumors is right next to her spinal cord, which is why she is experiencing the odd side affects she has been experiencing. From the MRI readings they received from SGH, they were not able to detect the second tumor near the liver and at this time are limiting it to the one tumor near the spinal cord. They will do further MRIs to confirm this.

We will be home for the weekend for some much needed family time, and on Monday at 1pm, we will return to Hopkins to begin days of more testing: blood, urine, bone marrow, bone scan, another MRI and CT scans, all designed to learn more about the tumor before surgery can occur. The doctors are trying to get the surgery done by the end of next week. After surgery, we will begin treatment of some sort. The type and length of the treatment will be determined by what they find during surgery.

At this point, we have been told by our doctors to be preparing ourselves for the likelihood of a treatment and recovery process that will take no less than six months.

Please pray that the tumor is not intertwined with the spinal cord. If it is, we will have to have a neurosurgeon do the surgery with oncology surgeons. And please pray for a full healing from her all cancer and ataxia.

Jen and I are so grateful for your friendship and ongoing prayers. We have been carried along by them. We are also being very well cared for by our care group and family, from visits in the hospital to simply being there with us in the down times. We are grieving a lot, but we are aware of God’s grace. He loves our little girl more than we do, and we trust him."

Above: Sarah two yrs later

Thank you to all who have walked with us over the last two years! We wouldn't be where we are today without you all!

Basketball and Bull Riding

2010-01-28T12:55:00.007-05:00

We signed the girls up for basketball this season. Let me tell you, it is such a flashback to my childhood. I love watching how cute they are as they learn to play. When they played soccer, I would just yell for fun. I know nothing about soccer so it was not informed yelling! But since I grew up playing, I'm yelling a bit more now. Dave says I'm one of those "crazy moms". Oh well, I think I'm enjoying this as much as the girls are. Now tell me they don't look adorable!

Once again Believe in Tomorrow gave us an amazing opportunity. We got to attend a Professional Bull Riders Event. Not just attend the event but sit in the front row! I'm not typically into that kind of stuff, but it was so fun!

The Best Christmas Gift Ever!!

2009-12-29T21:49:00.004-05:00

This year for Christmas, Dave gave me the most amazing gift ever. He created a book from our blog recounting Sarah's early battle with cancer. It is over 100 pages! There were many tears as I paged through this book. What a treasure to have all the memories in book form. So grateful that my hubby knew how much this would mean to me. Can't wait to show everyone!

Alethea's Christmas cards!!

2009-11-10T18:06:00.003-05:00

Believe In Tomorrow is an organization that provides exceptional hospital and respite housing services to critically ill children and their families. They do this because they believe in keeping families together during a child’s medical crisis, because being together as a family is critical in the healing process for the sick child. We support this great organization, not because they have given to us, but because they do great things for families who really need help.

This past summer, they did a contest open for all the kids in their program, which includes our kids because of Sarah's sickness. The contest was a drawing contest, in which the winner's picture would be selected to sell as fundraising Christmas cards for BIT. Well, much to our surprise and delight, TWO of Alethea's pictures won the contest. They are the images below:

(note: they added the calligraphy)

These images were put on a Christmas card's, to be sold by Believe in Tomorrow, with all proceeds going directly to support BIT. On the back of the cards it gives acknowledgment to Alethea, age 7, for the drawing. Pretty cool.

Click here to buy some cards of your own if you are interested. Like I said, all proceeds got directly to this great organization. Click here if you want to see them or order some for yourself.

Alethea turns 8!

2009-09-29T12:55:00.006-05:00

I can't believe we have an 8 year old! We had such a wonderful time celebrating Alethea's birthday this year. We did many things together as a family and also had a birthday party with some friends as well. I have to say, we had a blast. The girls decorated picture frames, ate pizza, had their nails painted, made ice cream sundaes, had a dance party, and created their own restaurant. It was so fun to watch them all have such a great time together. What a joy it was to celebrate the blessing Alethea is to our family!

Sarah getting in on the nail painting. Lauren was such blessing as she came to help me paint all the girls nails.

Nail salon on the kitchen floor. Each girl girl got her nails painted and had polka dots put on as well. They loved it!

Finished picture frame with the group shot we took at the beginning of the party. Can't wait to show them when they're older. Such a blessing to have such a wonderful group of friends.

Making ice cream sundaes. Alethea's favorite!

DANCE PARTY!!

Back to School

2009-09-24T18:11:00.003-05:00

We're back into the school routine again. Both girls have done amazingly well with the school schedule. Going to bed and getting up early is never easy after summer. The girls both love school and their teachers. Here are some pictures from the first day. They both look so grown up. Alethea is in second grade and Mikaela is in first grade this year.

Happy Birthday Sarah!!

2009-09-13T12:54:00.006-05:00

So, I'm way late on this, but Sarah celebrated her 3rd birthday on August 22. We have had multiple parties for her. She's been a pretty blessed little girl. It's so fun to see her enjoying life!

Here is the amazing cake that Dave made for Sarah. Yes, Dave. Sarah loves Minnie Mouse and he was determined to bless his girlie. Added to that, he loves watching Ace of Cakes and was loving the idea of trying this for Sarah.

Her new scooter from Grandma and Grandpa Garlick. Not that she can ride it, but she really wants to be doing what the big kids are doing. You've got to love her determination.

Shopping cart from Aunt Jess. Notice her taking care of baby in the front seat. So cute!

Opening gifts from the other kids. They all had very specific ideas of what they wanted to get her.

Enjoying her Elmo cake at Grandma and Grandpa Brewer's house.

Just a quick update on her health. Sarah continues to get treatment at Hopkins once a month. This typically really seems to help her. Unfortunately this last week, she got a virus that set her back considerably in her ability to walk. We had to make an extra trip to Hopkins this last week, and will possibly go back this week as well. These extra treatments just help her get through the time that she is sick with the virus. They really seem to help. There has also been some talk of trying some other drugs in the coming months, but we will see.

IEP

2009-07-19T17:29:00.003-05:00

This past Thursday we had our first IEP (Individualized Education Plan) meeting with the Montgomery County Public School (MCPS) system. Sarah is a part of MD Infants and Toddlers, which is a division of the Special Education services of the MD Department of Education. This is the program special education are involved with prior to pre-school.

The meeting went great, and each lady that was a part of the meeting was fantastic. Sarah's oncology doctor had written a letter to the board requesting special treatment for Sarah because of her suppressed immune system and susceptability to sickness. The school system agreed, and therefore agreed to have all Sarah's therapy be in-home!! This is really good news, because otherwise, Jen would have to take Sarah to a school for her therapy up to 3 times a week. Not fun. However, now all the therapists will come to our house and work in our own living room!

We are off to Hilton Head, SC for vacation on Tuesday. We are hoping Sarah does well at the beach and enjoys playing in the sand!

I love him!

2009-07-17T13:44:00.002-05:00

Ag Farm

2009-07-07T20:11:00.003-05:00

Today we went to a class at the Ag Farm. What an amazing place! We had such a fun time. The girls were able to participate in so many activities. Tug of war, looking for insects in a stream, a water filled relay race, egg toss, and a potato sack race. The most hilarious part of the day was that each team was responsible for taking care of two young goats for the two hours we were at the farm. The kids loved it! Basically we walked the goat on a leash going from each activity, and if we were up for it we could let the goat off the leash and let him run. Since we only had three moms in our group, I had responsibility for one of the goats most of the time. If you know me at all, this was a site! My friend Mieke took a picture, so when I get it I'll be sure to prove that I really did it. We all had an amazing time. I hope since we live so close we'll be able to take advantage of more programs and classes at the farm.

34 - Happy birthday!!

2009-06-30T22:09:00.007-05:00

I always remind Jen that she will always be older than me...and, I like to remind her of that often.

This past year has been a bumpy ride for our family, and it is true to say that this year has hit Jen harder than anyone else in our family. Jen is the one who is at home all day with Sarah, working with OTs, PTs, and all kinds of other therapists. Jen is the one who has to patiently deal with Sarah all day, through all of her irrational behavior. Jen is the one who primarily takes Sarah to Hopkins for her all day infusions. Jen is also the one who takes care of the 3 other kids we have all day, while I'm at work. Considering what Jen does all day long, I look at work like its a vacation. She works much harder than I do!

The kids are SO excited about blessing mom on her birthday. They are literally counting down the days til her birthday. This is just a picture into how much they love their mom!

In asking what we should get mom for her birthday, they each had their own suggestion...which ironically, really identifies something of their personality as well. Caleb was easy...he wanted to get mom candy. I'm sure there is a secret ploy for him to be able to eat the candy himself, but nonetheless, we still got mom her favorite candy (chewy, fruity anything...in this case, swedish fish and chewy jolly ranchers). Mikaela picked an outfit. She walked all over Target and was sizing everything up. She ended up with something nice. Alethea, very thoughtfully, remembered that Jen looked for a book last time they were at the library, but it was checked out. She had the idea of going to Borders to get the book. So we went and bought "My sister's keeper" for Jen to read. I ended up getting her tickets to the American Idol tour at the Verizon Center. Jen's hooked on that show big time.

The kids also wanted to make Jen a cake. I think this was partially motivated by one of our favorite shows called "Ace of Cakes". They were inspired and off we went. All three agreed that mom's favorite colors were green and orange. Then Alethea drew up the master plans for the cake.

So, this was our goal. We scaled it back a bit to 3 tiers, and went for it...

Caleb was pretty much good for nothing but licking the bowl of icing. That kid is a total goof ball.

...in the end, we achieved our goal close enough.

On the morning of her birthday, she'll wake up to this cake, her presents, and her favorite breakfast.

Happy birthday babe! I love you, the kids love you, and we are grateful for everything you do for our family!

Dave

Happy Father's Day!

2009-06-21T20:25:00.005-05:00

I don't even know where to begin. Dave is such an amazing father! The way he balances loving, caring, training, and correcting is provoking. I want to be more like him. He totally has our kids hearts. They run to him the minute he walks in the door. They just love to be with him. And who wouldn't? He is so much fun!! The guy can make any regular activity seem like it's the best thing ever. Most importantly though, he instills in them a love for God and the church. For that, I am grateful.

I never would have guessed what the last year and a half would hold for us. I can say this though. I am so grateful that I get to walk through this trial with Dave by my side. He listens to me, cries with me, challenges me, and loves me. And oh boy, does he love Sarah. The way he cares for her is so sweet to watch. She and all the kids are so blessed to have a Dad like him. Here's just a glimpse of all the fun things Daddy does...

Living your childhood through your kids

2009-06-20T07:22:00.004-05:00

Its pretty funny how that works, how your kids end up liking and doing the same things that you did when you were little. Its probably because we buy them things (and do things) that we loved so much when we were kids. I think I like some of these things more than my own kids do!

Here's a couple examples:

Caleb's love for baseball and for the O's! I must admit, I've trained him hard in this. Notice the jacket in this picture? It was mine when I was his age. My mom kept it all these years, and now I've passed it on to him.

Big wheels! Man, our neighborhood big wheel crew terrorized our street with big wheels. My mom got one for Caleb, and he loves it. Brings back tons of memories for me.

The girls just finished up another year of soccer. They did really great and loved it. Their team color was orange, which reminded me of when I played, because my team color for "Kings Contrivance" was always purple. Its funny the things I remember, like my team color, and all the practices with Mr. Holmes and Mr. Pollock at Atholton ES.
There are lots of other childhood things we've passed on to our kids...matchbox cars and tracks, peanut butter play dough...

Sarah update:
Sarah recently finished up a new protocol for a drug called Rituximab (as Jen mentioned in an earlier post) and is now back to receiving IVIG. This is the drug that helps her movement the best. She still shakes a lot, but is a fighter in every sense of the word. She hasn't ever let her muscle tremors stop her from doing anything she wants!

She is starting to talk a little bit more too. The muscle disorder effects her speech a bit. She is putting 3-4-5 word sentences together, which is really cool to watch develop!

Jen continues to be an amazing mom to Sarah and the other kids. Sarah needs oversight and watching pretty much 24/7...which makes it pretty hard to do stuff during the day. But, somehow, she makes it all work and manages to go on walks, go to the pool, go strawberry picking, etc...
No wonder Jen wants to go to bed at 8pm every night!

A Wedding

2009-06-13T19:44:00.008-05:00

A few weekends ago, we had the wonderful opportunity to see some of our dear friends get married. We have known Garrett and Elise since they were in high school. We have become good friends with both of them and their families. They also serve on Dave's admin team, Elise is Dave's secretary, and Elise has been one of our babysitters for years now. Elise also has a special place in her heart for Sarah. When she came to me when they got engaged and asked if Sarah could be a flower girl in her wedding, it brought tears to my eyes just thinking that she was willing to sacrifice a "perfect" wedding to have Sarah be a part, and literally stumble down the aisle. As months went on, I was very nervous about letting Sarah do this, but Elise was always quick to tell me that she didn't care what happened she just wanted to honor Sarah. Well, all that to say, I'm grateful she had that attitude because as you can see in this series of pictures, she didn't make it down the aisle. Poor girlie tried so hard. Wasn't she cute though!

Elise also asked the older girls if they would help hand out programs. They were so excited and were able to get special dresses for the occasion. Dave also had the privilege of being a groomsman as well. It was such a wonderful day! Here is a family shot. Five out of six isn't bad as far as looking at the camera. We'll take what we can get!

They had a candy reception at church before their dinner reception. The kids kept making sure they were invited to this reception. They didn't want to be left out of the fun!

Caleb and Daddy, with some chocolate covered pretzels.

Alethea and Daddy, with a huge lollipop.

Mikaela and Daddy

These next few pictures are taken by our dear friend Kristen. Glad I have some professional pictures to remember the day as well.

What's Up?

2009-06-11T13:43:00.006-05:00

Things have been very busy around here. With the end of school, and all Sarah's additional treatments, the poor blog has been neglected. Dave asked me this morning if I could please do an update. I'll try and give a quick update, and then try to do some more posts with some bigger events that have taken place. Here are some pictures that capture what's been going on...

the three older kids played soccer this Spring

the girls had their first piano recital

The girls and Dave did a 5K run at Covenant Life School

Sarah continues to do well. She just finished a 5 week round of treatment where we were at Hopkins once a week. Although we didn't see the kind of results we hoped for, we learned some good information about what drug really does help her the most. We that information, we will continue on with her getting IVIG once a month, with the hope that at some point we can space it out a little more.

Up next... a wedding, a baby, and the last day of school!

Happy Mother's Day

2009-05-10T07:26:00.008-05:00

My kids have the best mom in the world. I'm convinced of that. Having 4 kids (some would argue 5 including me) is a challenge in an of itself...especially since those 4 kids are packed close together from ages 7-2. On top of this, this past year has stretched Jen in unbelievable ways, as she is the one primarily tasked with caring for Sarah during the day. This job is physically, emotionally and spiritually exhausting. Life has changed for us, but what I really appreciate about Jen is the way she is able to continue caring for the other kids as well. Jen has a great relationship with each of her 4 children, and each one loves their momma in a unique way. Its pretty cool to see, and its a sign of her love for them.

Babe, thanks for being the best mom in the world to our kids! I love you so much, and I know the kids do as well!

Dave

One more thing...

2009-05-01T06:18:00.001-05:00

One thing that we should have added to the last post was the good news we received from the doctor. He feels that since Sarah has been cancer free for a year now, we can stop having regular MRI's. We are grateful to God for this good news!

Update

2009-04-30T19:09:00.002-05:00

Here is an email that Dave sent to the pastoral team the other day. Just wanted to fill the rest of you in.....

I haven’t updated you all in a while about Sarah’s progress, partly because there hasn’t been a lot to update on. However, there have been some recent developments that I want to bring you all up on.

At Sarah’s last IVIG Hopkins treatment (Intravenous immune globulin – 1x/mo), Sarah’s primary oncology doctor came to see her and was not happy with Sarah’s lack of progress in battling the effects of Opsoclonus-Myoclonus-Ataxia (OMA) as seen in her muscle coordination, walking, speech, etc. He asked us to consider a more aggressive protocol for treatment, pretty much going back to the way things were right after her surgery. Jen and I are in faith for this, and we hope this brings some good results for Sarah.

So, in addition to the IVIG, Sarah will now get a port-administered weekly dose of Rituximab every Wednesday for the next month. In addition, Sarah will be getting a 5 day pulse of oral steroids to try to jump start her body in overcoming some of the negative side effects. She will then have to begin the oral meds to counteract the effects of the steroids as well.

Last time we did this, the effect was noticeable on Sarah. She will be at Hopkins for all day infusions 5x over the next month, and the steroids also really affect her behavior and mood swings.

In addition, we learned something else. As a result of the location of the tumor, and the surgery to remove it, Sarah has something called Horner syndrome. It isn’t really serious or life threatening, it more just explains the symptoms we see in Sarah. The tumor (and surgery) caused a break in her sympathetic chain ganglia, which are nerves that connect the sympathetic nervous system to the head and the arm. The result is nerve loss input from the sympathetic ganglia. The result of this break is that Sarah’s pupil on one side is smaller than the other, her eyelid is lower on one side as well, the temperature on one side of her body is different than the other side (resulting in a flushed face), and poor circulation on her left side resulting in a cold left hand and a warm right hand. In addition, as a result of Horner syndrome, Sarah has two different colored eyes (which I’ve noticed before but never understood why) because the left side of this nerve system effected the pigmentation of her left eye. Its all pretty fascinating stuff really...we learned all this and Jen’s response was “wow, God is so amazing in how he made the human body!” Horner syndrome isn’t anything to be really alarmed by, it just more explains the symptoms we are seeing.

The plan is to begin these treatments in the next week. We will start the steroids as soon as we get the prescription, and Jen will take Sarah to Hopkins on May 13th for her 1st (of 4) Rituximab treatments. We’d love your prayers for Sarah and for Jen. We pray these drugs help Sarah in overcoming the effects of OMA. Please also be praying for Jen, as spending 8-10 hrs in a children’s cancer ward, holding your daughter the whole time, can be pretty exhausting.

Thanks for your continued support of our family. Jen and I are doing well in our souls, trusting God for the step that is right in front of us.

Dave

Port to Fort

2009-04-27T19:51:00.002-05:00

Yesterday was the Believe in Tomorrow's Port to Fort 6K. We had been fundraising and getting our team together for months. We ended up having about 30 people on our team and being the top fundraising team! We also had "team" shirts made that said Sarah's Brew Crew. Thanks to everyone who supported us by either giving money, walking with us, or just cheering us on! We had such a great time. We definitely want to make this a yearly tradition. We are so grateful to be able to give back to this wonderful organization. Check out the newlsetter from last month. They interviewed Dave for a little story.

Deep Creek

2009-04-11T11:38:00.012-05:00

A few weeks ago we went to Deep Creek lake for a weekend. The house was given to us by Believe in Tomorrow. Wisp Resort also gave us a very generous gift card to use any way we wanted to at their resort. We had so much fun!! The weather was perfect for beginning skiers. We made so many memories and can't wait to go back next year!

The fam in front of the Believe in Tomorrow house.

We had access to the indoor swimming pool at Wisp. Sarah's loved the water!

We also celebrated Caleb and Mikaela's birthdays. We went out for a family dinner and surprised them both with new bikes!

While we were there we decided to let the three older kids do a half day ski school. By the end of the day, they had really picked it up. I was shocked. They all did amazing!

Believe in Tomorrow is also the organization that gave us our beach vacation. At the end of this month we are participating in a fundraiser for this group. We are so excited to give back to this group that has given us so much. If you want to join with us, check out this link.

Caleb's 4th Birthday

2009-03-20T07:03:00.007-05:00

Bubba turned 4 yesterday. It was a pretty low key day since Dave is gone on the pastor's retreat. We will be celebrating this weekend while at Deep Creek. Dave asked me not to do too much because he wanted to be included in all the festivities so I decided to take Caleb for donuts at Krispy Kreme. I had planned to take him in and let him choose whichever one he wanted. Well, my plans were foiled when he fell asleep on the way there, at 10:00 in the morning! I guess being four takes a lot of work! So, instead I went through the drive thru. When we got home, I tried to make eating a donut as special as possible. I put four candles in his donut and sang Happy Birthday to him. That seemed to make him happy. Sarah was happy to be included in the donut eating. I'll try to have lots more pictures from our weekend away! Oh, the best line of the day from Caleb was, "My legs are longer now that I'm four." Too cute. I love my Bubba.

Mikaela's 6th Birthday!

2009-03-16T20:24:00.008-05:00

I can't believe Mikaela is 6! We had such a fun day! First, the whole fam was able to join Mikaela in her class for a small celebration. She was able to bring a special snack in for her friends. Her teacher also allows all the kids an opportunity to honor the birthday person. It was so neat to see how even in kindergarten the kids are able to see evidences of grace in each other. Mikaela and I were able to talk about it later. I asked her later what she thought of all that. She said "I almost started crying." In fact, I almost did too! It really was a neat experience. After she got out of school her and I went to lunch and on a shopping spree. She was able to pick out whatever she wanted. The girl walked away with some pretty cool stuff. When Alethea got home from school we were off to Chuckie Cheese for games and then Panera Bread for dinner. All Mikalea's choosing. Right before bed, Grandma and Grandad came over for presents. Not a bad day!!

Next up....Caleb's 4th birthday on Thursday and a long weekend at Deep Creek. Fun times!!!

Believe in Tomorrow

2009-02-15T11:59:00.007-05:00

You might remember last summer our family was able to go a paid vacation to the beach. This was a gift from an organization called Believe in Tomorrow. They are a wonderful organization that provides many things for people who have sick kids in their families. They provide activities, retreat housing, hands on adventures, and hospital housing. This April we are participating in a fundraising event for this organization called Believe in Tomorrow's Port to Fort run/walk. We would love you to join our team, Sarah's Brew Crew, for this event on April 26th. You can check out my fundraising page at www.firstgiving.com/jenbrewer for more information.

February 8

2009-02-08T14:50:00.011-05:00

One year ago our lives were forever changed. Today marks the day when we heard the words, "your daughter has a tumor". In some ways I can't believe a year has gone by. In other ways it feels like just yesterday. The details of those first few hours are so vivid in my mind. These are pictures that Dave took on his phone exactly one year ago today, as we waited in the hospital room to hear the results of Sarah's MRI.

I have spent time the last week (as I often do) reading all the scripture verses that people sent me during that time as well as the blog entries Dave and I made. My emotions are all over the map, but I think that is normal. Not a day goes by that I am not sad for my girlie as I watch her endure all that she does. BUT, as I read our blog, I am also freshly aware of God's nearness to us during that time as well. Re-reading all those entries really has encouraged my soul. Seeing all the prayers that God answered in those first few weeks is really amazing. As time goes by, and days continue to be emotionally and physically hard, I can be discouraged that the future is uncertain. But when I take time to focus on the truth of God's word, and all that He has already done, it brings encouragement to my soul. One song in particular has taken on new meaning to me as well.

How firm a foundation, ye saints of the Lord,
is laid for your faith in his excellent word!
What more can he say than to you he hath said,
to you that for refuge to Jesus have fled?

"Fear not, I am with thee; O be not dismayed!
For I am thy God, and will still give thee aid;
I'll strengthen thee, help thee, and cause thee to stand,
upheld by my righteous, omnipotent hand.

"When through the deep waters I call thee to go,
the rivers of woe shall not thee overflow;
for I will be with thee, thy troubles to bless,
and sanctify to thee thy deepest distress.

"When through fiery trials thy pathway shall lie,
my grace, all sufficient, shall be thy supply;
the flame shall not hurt thee; I only design
thy dross to consume, and thy gold to refine.

"The soul that on Jesus hath leaned for repose,
I will not, I will not desert to its foes;
that soul, though all hell shall endeavor to shake,
I'll never, no, never, no, never forsake."

This past year has drawn us closer to the Lord and developed a dependence on Him like I've never known. Each day is a fight for faith...but each day, His mercy is new to me. Not only has my relationship with the Lord deepened, but His church has become more precious to me as well. So many people have made sacrifices of time and money to care for our family, both practically and spiritually. These people truly represent the love of God in tangible ways.

I would be remiss if I didn't mention what this trial has done for our marriage and our family. There have been many nights during this last year where Dave has listened to my tears. He has been able to grieve with me while speaking truth that I need to hear. We discussed early on how important communication was going to be. We had no idea how true that was. I am so grateful for Dave and how he has allowed me to tell him whatever I am feeling. I have never felt like he didn't understand. Even when my thoughts or feelings don't make sense he just holds me and lets me cry. I am so grateful to be walking this road with him by my side.

The other kids- they are amazing. They have learned to be so compassionate and patient with their little sister. They have had to learn to be others focused because of the many sacrifices they have had to make. Having to go from home schooling to private school, many more babysitters, not being able to go places because of germs...all this with very little complaining. The other three kids joyfully respond when we tell them we can't do something because of Sarah. How grateful I am to watch them love their sister. They really seem to understand the seriousness of her cancer and how it has changed our lives.

Hebrews 10:23- Let us hold fast to the confession of our hope without wavering, for He who promised is faithful.

The sorrow that humbles us and drives us closer to God is a blessing and a positive gain.- JC Ryle

On this day, as we look back on the last year, we see Sarah doing so much better in many ways. We continue to pray for healing for Sarah in whatever way God chooses.

All Clear

2009-02-07T07:43:00.002-05:00

From the doctor- Sarah's MRI read is final today: No evidence of tumor. We are grateful to God for this result. Just wanted you all to know. As always, thanks for praying for our family.

Today

2009-02-05T06:47:00.003-05:00

Just wanted you all to know that I'm taking Sarah for an MRI at Hopkins today. The doctor has us doing these every three months just as precaution. Though the doctors have told us that this kind of tumor is not likely to grow back aggressively, we still need to do these MRI's to make sure. This is another opportunity to express faith and trust towards God. I always find these days to be emotionally and physically exhausting. This is the first time that Dave will not be able to go with me for one of these, so I'm grateful that my friend Susan has offered to go with me. We'll let you know when we get the results from the doctor, probably sometime tomorrow or Monday. As always, thanks for praying for our family.

New York

2009-02-03T12:51:00.007-05:00

A few weekends ago, Dave and I took the older three kids to New York City for a night. We had such a great time! We hit all the fun kid spots, and had a great time seeing the city. Some of our stops included the Statue of Liberty, Toys R Us, M&M store, Times Square, and Rockefeller Center. Lots of wonderful memories!!

First stop, a drive by view of the Statue of Liberty

Alethea and Mommy on the ferris wheel inside Toys R Us (photo by Mikaela) Can you believe this was my first time on a ferris wheel.

Top of the Rock, with a view of the Empire State building

Top of the Rock (photo by Mikaela)

We went to an off broadway kid show called Dear Edwina. A friend from church had the role of Edwina. A picture with the star after the show!

The Party

2009-01-28T11:50:00.006-05:00

The kids had so much fun getting ready for the party. It was just our family but the kids were so excited about making it special for Daddy. They picked out streamers, balloons, special plates, and food.

Blowing up balloons for the party

Ready for our taco dinner. Complete with chips and salsa from Chevys of course!

Enjoying dessert- strawberry shortcake

Happy Birthday Daddy!

2009-01-27T14:14:00.005-05:00

Sarah- Dada home. I love playing wrestle guy with you and getting lots of hugs and kisses.

Mikaela- I love you. You are the best dad! Thanks for riding bikes with me.

Caleb- I love man time and going to Home Depot.

Alethea- I love you Dad. I like when you help me make lego houses and when you lunch monitor for my class.

Another successful IVig treatment

2009-01-21T19:45:00.002-05:00

About a week and a half ago, Sarah started a sharp and steady decline in her motor skills. Perhaps it felt like so drastic because the four weeks prior were the best we'd seen Sarah in a year. We called the doctor and he suggested we push up her next treatment by a couple weeks, asking us to come in again for another IVig treatment. We think this is what is helping Sarah do better, but as soon as the drug wears off (usually around 4 weeks), her symptoms come back quickly.

The fact that this particular drug is helping so drastically is both good and bad. Good, because they have found what is helping her. Bad, because they don't know really WHY it's helping her. The bad antibodies that are in her blood stream (originally from the cancer) should be fought off by your own body's immune system. However, Sarah's isn't doing that. So, the IVig treatment is basically taking 10,000 different blood samples, extracting out the immunoglobulins from each, and injecting all of them into Sarah's body. All these other immunoglobulins are fighting the bad antibodies. So, this is good, but its kind of like a band-aid to the real problem. Jen asked the doctor about the long term implications, and was told that IVig is can be a long term maintenance type of drug for other ailments.

We are very grateful that this particular drug is working. We pray that it keeps working. Ultimately, we pray that Sarah's own immune system will "kick in" and start fighting on its own.

Disclaimer: all the "doctor" talk is simply my attempt to communicate what has been told to me. So if you are a real doctor or nurse, feel free to correct any of my lame explanations.

Survivor Man

2009-01-17T09:27:00.002-05:00

Caleb- "Mom, can I put my lips on the tree like survivor man?" Can you tell the kids have a new favorite show?!

Horse Race

2009-01-14T13:28:00.002-05:00

Yesterday Caleb informed me that he had a race he needed to go to. So, he got dressed in his running shorts and shoes with his golf shirt. It was so cold that he decided he also needed his Terps sweatshirt. Usually the "races" he has to go to are running races. Well, he informed me yesterday that this was a horse race, not a running race, and that it was in New York and I needed to drive him there. (We are taking the three older kids to NY for a night this weekend. I think he's excited!) He was all excited until we were "ready to go". He was not buying the "pretend" car I was providing him. He really wanted me to drive him around in the van. Silly boy! After a few tears I convinced him to show Sarah how to ride the horse.

Holidays

2009-01-11T12:43:00.012-05:00

We had a great time over the holidays. The girls were home for two whole weeks from school. It was so fun. Dave was able to stay home quite a bit too, so we had lots of great family time! The week before Christmas was filled with lots of fun stuff at school. Mikaela's class made gingerbread houses, the elementary school put on a Christmas concert during chapel one day, and they both had fun parties on the last day before vacation.

Unfortunately I don't have any good pictures of Alethea during the concert. I also realized I hardly took any the whole month, but here are a few cute ones that I do have.

Alethea lost another tooth. This time it was on the bottom and it was at school!

This is one of Caleb's favorite Christmas gifts. A head lamp from the Mays'. He wears this all the time!

This is just a cute one. It's so great that Alethea can read. They all just snuggled up to her to read a book. I love it!

So now we're just back into the swing of things. The girls went back to school last week. They did much better adjusting than I thought they would. Sarah continues to be doing really well. We are continuing to reduce her steroid dose, which is so great. I feel like I'm seeing much more of her personality. She is such a two year old. Her speech really seems to be coming along. She is putting many more words together. With all the new words she is trying she refuses to say yes.

Update

2008-12-19T21:35:00.003-05:00

Thank you all for praying. Sarah did as well as could be expected. She didn't pull out her needle, praise God, but she didn't fall asleep either. She is such a trooper. Who would like to be hooked up to a poll with tubing all day? Not me! My parents went with us. It's always nice to have extra hands and distractions.

If you think of it....

2008-12-18T06:34:00.002-05:00

...would you please pray for Sarah and I today. I am taking her for her monthly IVIG treatment at Hopkins. A specific prayer request would be that she not pull out her needle from her port, which she did twice last time. She is definitely an "opinionated" little girl, and she always makes herself known, which is why we have always called her trouble trouble!

I would also love it if she would be able to sleep for a bit. This always helps the time go by faster and helps with her restlessness. We are praying that we would see the same improvement in her coordination as last time, which would give us an indication as to which drug is helping her the most. Once again, this is an opportunity to put our trust in the Lord and not in medicine, but we are grateful that God has provided these drugs to help our girlie!

Disney World

2008-12-14T20:08:00.006-05:00

We just got back from a wonderful week at Disney World. We had such a wonderful time being together with my parents and my sister. My parents were so generous and we got to do so much. We went to Disney's Hollywood Studios, Sea World twice, and Magic Kingdom twice. We had so much fun riding rides, meeting characters, seeing shows, and just being together. The kids did great! Rather than spread the posts out I'm just going to post the whole week all at once. We know how good I am at keeping up with posting.

The whole fam...

One highlight was getting to see my freshman year college roomate and meeting her husband and daughter....

Alethea meeting Mickey and Minnie....

Alethea, Mikaela, and I got to feed dolphins at Sea World.....

Caleb after a day at Sea World.....yes, he is laying in the parking lot using his new sword as a pillow.....

lots and lots of rides......

meeting Belle....

meeting Cinderella.....

Buzz Lightyear.....

Lightening and Mater....

Jo Jo and Goliath.....

Mom and Dad, thank you so much for your generosity. We all had a great time, and I know these will be memories that the kids have forever. We love you!!!

Poor Girlie

2008-12-03T08:40:00.006-05:00

Sarah is such a trooper. I know I've said it before, but she really amazes me. The last four weeks have been wonderful. Ever since her last IVIG treatment, she had been walking so great. Probably the best she had been since this whole thing started. Over the last few days we started to see a decline, and yesterday was particularly rough. She was falling so much. She had a few spills that I knew were going to leave a mark. This is the end result. Even with the shiner she is stilling willing to give us her happy face. Oh how I love her!!!

Much to be Grateful for

2008-11-30T12:38:00.010-05:00

I am so grateful for Covenant Life School. The girls have such wonderful opportunities. The week before Thanksgiving was full of lots of great stuff at school. The week started with Alethea going on a field trip to Rose Hill Manor. The class got to learn about what life was like in colonial days. There were many neat things to see. A working kitchen, with no stove, only a fireplace, colonial games, homes, transportation, and much more. I love this first picture. Alethea's teacher is sitting down to a tea party with some of the girls.

The next day there was a Thanksgiving feast at school. The teachers planned such a wonderful day for the kids. A huge feast for lunch, Alethea's class put on a play, Mikaela's class performed Five Little Pumpkins, they got to play Indian games, and do lots of arts and crafts.

The following day, was a highlight for me. I had the honor of being with good friends as they had their 6th baby. I was so blessed to be able to be there with them. I've never been on the other side of labor and delivery. Wow! God is so amazing!
Meet Piper Hope Lowe

Another thing I'm grateful for is siblings who love to be silly together!

Happenings

2008-11-10T19:19:00.004-05:00

I'm going to stop apologizing for not blogging. It's just one of those things that gets pushed to the bottom of the list. Life seems to be flying by. We are in the groove of school, and may therapists coming in and out of the house. I think we've realized our new normal. I've missed a lot over the last few months, field trips, Disney on Ice, field day at school, picking pumpkins, and never finished vacation, but I think I'll just try to keep up from here on out. The best news we've had recently is that Sarah's latest MRI came back clear. Still no cancer! We are so grateful. I'll just leave you with a few pictures of some happenings lately.

Harvest Party- 50's girl, and Lucy from Narnia

doggy and Grandma
my cute, I mean scary, dragon

our latest family picture from the Gymnasts Tour of Champions show

Greene Turtle Fundraiser

2008-10-20T19:22:00.002-05:00

Dear friends,

As many of you are aware, the Lowe family has been going through quite a trial over the last few years, and more specifically the last few months. Matt had recent surgery to remove a brain tumor, but is still dealing with the effects. With medical costs adding up, we are seeking to do all we can to help them out with medical bills. Matt and Helen have 5 wonderful children, and are expecting their 6th child in late November.

This coming Monday, October 27th, friends of the Lowes will be hosting a fundraiser in their honor at the Greene Turtle Restaurant in Columbia, MD. The Greene Turtle will be giving 10% of the all the proceeds for the entire day back to Matt and Helen. So simply coming in and having lunch or dinner will help in the fundraiser. In addition, we will be having a raffle throughout the day to raise more money for them. The gifts range from restaurant gift cards, a framed redskins jersey, golf packages, Wii bundle package and photography packages. If this sounds familiar, it is because this is exactly what my brother and his wife did for Jen and I!

The location of the Columbia Greene Turtle is 8872 McGaw Road, Columbia, MD 21045. The Greene Turtle has a large restaurant area that is family friendly, so feel free to bring the family. Matt and Helen will be there for most of the day, as will Jen and I, and I know they would love to see you all there!

Another ER trip

2008-10-05T17:26:00.006-05:00

This time it was not Sarah....Caleb was playing in the playhouse in the basement and fell and hit his head on the wall. It was obvious pretty quickly that we needed to go to the ER. So, off I went to the peds ER at Montgomery General. Once again they were great. I think I was only gone at most an hour and a half total. Amazing!! Caleb blew me away. He was sooo brave. I was so proud of my big boy. He only cried during the three staples and just buried his head in his blue sheet. He cried for a bit after, and then was charming everyone in the place!

Better late than never

2008-10-03T11:48:00.004-05:00

Well, with all that's been going on around here I am VERY far behind on the blogging. I was midway through vacation when things got crazy with Sarah. I'm going to make an attempt to get caught up with that, and then all the other happenings around here.
Day 3 of our vacation was wonderful. It started with a boat ride from a man in the community that took us fishing and sightseeing on his private boat. Almost all of us had a great time. I'm sure you can tell who wasn't so sure about this whole experience!

Caleb's fish

Alethea's fish...we finally got her to stand up and try a little fishing

sweet girlie

the whole crew

everyone got a chance to drive the boat

all tired out

Our day ended with a wonderful cookout with all the other Believe in Tomorrow families that were there that week. The volunteers provided such a wonderful evening. Great food and drinks, make your own sundaes for dessert, a clown, and arts and crafts. The night ended with a photo shoot of each family on the beach. I will post a picture of that when I get them.

arts and crafts

strawberry daiquiri's!

a new friend

fun with the clown

learning from a professional

beautiful!

Sarah

2008-10-02T07:19:00.002-05:00

Sarah has been having some difficulty lately keeping her shakiness under control. It is most likely the result of her brief battle with the flu a couple weeks ago (that landed us in the hospital). We knew that any virus is a big deal for Sarah, and brings with it the potential for the OMA symptoms to come back more acutely. Our doctor is concerned about this, and is responding by increasing her steroid dosage for 1 week with an attempt to "knock out the bad immune system "clone" that is cross-reacting with her brain" (our doctor's words...not ours!).
So, we increased her steroids and are praying that her OMA symptoms start to dissipate. Yesterday, our good friend Kenneth Maresco initiated prayer for Sarah in our weekly pastor's prayer meeting. It made me freshly grateful to God for the gift of prayer and how that helps us know his nearness, and made me grateful for friends who hold my little girl up in prayer.

Here are some more pictures of Sarah!

I love this picture for many reasons. I took it with my phone while holding Sarah. This was taken in Shady Grove Hospital just minutes before the doctor came into our hospital room to give us the worst news any parent could hear ("the MRI shows that your daughter has a tumor"). So much is captured in this picture. We had no idea of how much our life was going to change just minutes later. We were all hanging out that morning, expecting to go home and resume life, not knowing that just a couple hours later, we'd be sitting at Johns Hopkins Hospital getting briefed on Sarah's surgery and treatment plans. At the point this picture was taken, we were completely unaware that this day was going to be one of the most difficult days of our lives.

Pictures of Sarah's 2nd birthday. Her love for ice cream hasn't subsided!

Beach picture from last month!

Pictures of Sarah

2008-10-02T07:12:00.002-05:00

These pictures were taken at a cookout on our vacation. This was the vacation given to us by a wonderful organization called Believe in Tomorrow! They had a cookout in the honor of all the families with kids with cancer. They were amazing!

Happy Birthday Alethea!

2008-09-19T21:14:00.003-05:00

Alethea turned seven today! I cannot believe it. We are having a weekend full of celebrations. This morning before school, she woke up to cinnamon roles and a few gifts. At the end of her school day, Dave and I went to her class with a special treat. We brought Krispy Kreme donuts at her request. It was so fun. They all had made cards for her and sang Happy Birthday. She had wanted to take donut orders for everyone, but when we said that would be too difficult she settled for sprinkled donuts for all. Tonight we went out to dinner with my parents and sister, and then back to our house for cake and gifts. Tomorrow we will get together with Dave's family for a crab feast.

Emergency Room visit

2008-09-14T20:01:00.002-05:00

Because Sarah has a chest port in, we have to take fevers very seriously. There is always the possibility that a fever indicates an infection in her chest port.

On Friday afternoon, Sarah started throwing up around 4pm. She continued to throw up every 30 minutes until well past midnight. She became very lethargic right away, and felt warm. We took her temp throughout the night, and at 2am, her fever went up to 101.4 which is into the range of where doctors are concerned which is only 100.5. We called the on-call pediatric oncologist, and he instructed us to bring Sarah into the JHU ER right away. Jen took Sarah into the Hopkins ER and was there from 3am - 7am on Saturday morning. Turns out that Sarah's port was not infected, and that her fever was a "normal" fever caused by a sickness, but you still have to take it seriously. They checked her counts, gave her some antibiotics to fight whatever was causing the fever, and then released her to go home. Jen had to take Sarah back today to the ER to get another round of antibiotics.

Sarah seems to be feeling better today. She ate some crackers and pretzels, and drank some apple juice, and was able to keep it down. She's not back to 100%, but seems to be doing better.

The doctors warned us this would happen. Considering that she will have this chest port in for up to a year, it is inevitable that she will get a fever at some point...he said its a matter of when, not if. Nonetheless, it doesn't make it any easier when it happens. We are grateful though that this is only our first ER trip in the 6 months she has had her port.

All is back to normal here...after a crazy weekend.

Vacation- part 2

2008-09-08T19:32:00.004-05:00

On Monday morning, we were asked to come to an orientation meeting for our week. All I was told ahead of time was to come at 10am and hear about all the options for our week. Then I was to go home and discuss everything with the family and let them know what we wanted to do. I had NO idea what I was in store for. I was presented with two pages of activities for our family to choose from. All arranged AND paid for. I had to do none of the work! Some of the options were surf lessons, tennis lessons, golf lessons, parasailing, coast guard tour, mulitple free dinners, amusement park tickets, water park tickets, the list goes on.....So after we made all our choices we decided to spend the afternoon at the pool and then get ready for our CRAB dinner. This was so exciting. Even the kids were thrilled! We went to the restaurant, told them where we were from, and they sat us at a table with all the other families from Believe in Tomorrow. It was really neat because we ended up sitting next to a family whose son also has neuroblastoma. What a humbling discussion. We were freshly grateful for the mercy that the Lord has shown Sarah and our family. Anyway, back to the food. Once we sat down the food and drinks kept coming. Hushpuppies, fries, fried clams, corn, fried chicken, ribs, and crabs. It was amazing! The bill was all covered and they won't even let you leave a tip! As you can see Sarah loved the corn. There was a little girl there that spent most of the night cutting corn for Sarah. Too sweet!

After dinner we decided to take the kids miniature golfing with our coupons, and then ice cream. Since Dave and I grew up going to this area we took them to a golf course that we have been to many times, and a favorite ice cream place of Dave's. We had such a great time. The kids loved golf and Sarah spent her time lounging in the stroller. Fun times!

Vacation

2008-09-07T20:50:00.003-05:00

I promised pictures from vacation. I think I'll do a few posts because we had such an awesome time and have tons of pictures! Our week started on Saturday. When we arrived we were greeted by two huge gift baskets. One was a bucket full of beach toys for the kids and the second was a basket full of other fun stuff. Believe in Tomorrow t-shirts for the whole family, goggles, coupons for mini golf and other fun stuff, balls, frisbees.....so fun!

They have a pretty late check in compared to most places, so we just got settled and did the pool for an hour or so on Saturday night. Sunday was a beach day. ALL the kids loved the beach. None of them were afraid of water or sand. It was so fun to watch them all play in their own ways. Jumping waves, playing in the sand, crawling in the sand, boogie boarding.... It was great! We did hot dogs and french fries on the boardwalk that night. Probably more for Dave and I than for the kids. We love fries at the boardwalk! We can't go to the beach without having fries at least a few times.

Up next, our other favorite beach food.....CRABS!

First day of school

2008-09-02T13:25:00.003-05:00

Well, we made it through our first day of school. Only a few tears (all from me of course). I have to say, I love uniforms. No deciding what to wear other than what color socks and shoes to wear! I also think they look too cute!! Of course I had to take pictures before we left for school. Dave finally had to tell me to stop or we were going to be late.

Alethea- 1st grade

Mikaela- Kindergarden

Everything this morning was so typical of their little personalities.
Alethea woke up at "6:42"...she literally said "I woke up at six forty two"
Mikaela overslept and we had to wake her up. Even then, we had to literally drag her out of bed to the point where Caleb yelled while pushing on her, "Mikaela won't get out of bed Dad!"
Alethea was nervous the whole morning, questioning everything.
Mikaela didn't really care...to her, this school thing is no big deal.
When dropping them off, Mikaela went right into class and yelled over her shoulder "bye mom!"
Alethea needed a hug from mom and wouldn't let go of me...and then wanted another 10 hugs. She didn't want me to leave, but then she sheepishly went into class.

Its so funny to watch their personalities to come out. Tomorrow is school day #2!

Back Home

2008-09-01T20:23:00.003-05:00

We got back Thursday night from a wonderful and refreshing time at the beach. I can't believe I'm saying the word refreshing and vacation in the same sentence in light of having four small children at the beach. I really can say though that it was amazing. I will be posting tons of pictures from all the activities we did. We were there because of a wonderful organization called Believe in Tomorrow. They provided our place to stay, lots of treats, and tons of fun activities at no cost!! It was humbling to be the recipient of so much generosity. It was such a blessing. For now, I'm busy getting the girls ready for their first day of school. So exciting and so sad all at the same time! Pictures of the girls tomorrow!!!

Happy Birthday Sarah!!

2008-08-22T21:21:00.005-05:00

Girlie turned two today! What can we say about her? She is one of the sweetest girls we know. We joke that she is the best greeter in the whole family. She loves to wave and blow kisses, making everyone's day. The nurses at Hopkins say they love to take care of her because she is so sweet. Of course we would have to agree!

Girlie, we hope you will never remember these last few months but we can't wait to recount God's faithfulness to you and through you as you have lived this out. You amaze us with your bravery, hard work, perserverance, and joy. We love you so much!!

Love,
Mom and Dad

A whole month

2008-08-16T15:08:00.012-05:00

I said when I had internet I would start blogging again. I'm a little behind on that promise. It took about two weeks to get internet here at the house, but now we are good to go. We are totally loving being back at the townhouse. The kids always have someone to play with and it's so nice for Dave to be closer to the church.

This past month has been full! We got to go to a DC United Soccer game. We had never been to a pro soccer game. WOW! What an experience! We were given tickets by an organization called Casey Cares. They are a wonderful organization that does things for families with sick children. Next month we are going to see Sesame Street Live!

Dave and I got to go on a White House tour. It was amazing. The guy that gave us the tour knew so much. It was a beautiful night, and we felt so privileged to be there.

Last weekend we went to the Howard County Fair. The kids had so much fun playing games, riding ponies, riding rides, and of course eating cotton candy. At the fair, it was so funny. The three older kids wanted to ride the ferris wheel. I am not a fan of heights, so those kinds of rides always go to Dad. Well, he wasn't there, so Aunt Jess got the job of taking them on. I thought for sure at least one would freek out, but they all had a good time.

The girls also started golf lessons. My parents are huge golfers so they are paying for the girls to take them. It was supposed to be a group lesson, but so far, it's just been the two girls. Caleb enjoys playing on the putting green while he's waiting! He uses both his left and right so it's kind of tricky. He is equally good with both!

Sarah continues to do well. It has been so great having carpet here at the house. When we brought her here for the first time, she walked to me from across the room. Those ten steps made all the hard work of moving worth it. I definitely feel that this is so good for her. The more she practices the better she becomes. We were at Hopkins two days last week. She got a little sick yesterday, but I don't know if it was a bug that's going around, or from the chemo. The current plan has her weening her steroids until January, and the rest of her drugs she gets at Hopkins until March. All that of course depends on if she continues to make improvement in her gross motor skills. Her ability to walk is getting better, and she still has her tremors, but she really has learned to adapt to all the obstacles. She continues to receive PT and OT here at home.

And then there is Caleb. He is too funny. This was him during a recent bath!

The next two weeks will probably be quiet on the blog again. Dave will be leading the youth retreat this week and I have the opportunity to go with him. Then we go on vacation. The kids are counting down the days! Then, school starts!! I can't believe it. I'm sure that will provide many stories for the blog!

Craziness!

2008-07-19T06:20:00.003-05:00

Today marks the end of another crazy week here at the Brewer's. Sarah had two days of treatment at Hopkins this week (which went great), throw in that the start of the girls swimming lessons, and two therapy sessions here at the house for Sarah. If that were not enough, today is the big day! We are moving!!! We are so excited to be back in Gaithersburg near good friends. Although I have to say, I will be glad when all the packing and unpacking is done. Every time we move I say I am never doing this again! Anyway, just wanted to let you know that I probably won't have internet for some time so things will probably be slow on the blog. (not like I've been that great to begin with) See you soon!!

Great Wolf Lodge

2008-07-11T19:51:00.003-05:00

Last week, we were able to go to one of our favorite places, Great Wolf Lodge. It is a great indoor water park that we found a few years back. We took my parents with us this time for fun and extra help. (and boy did we need the help!) We had a blast!! It is so fun to see all the kids find their "favorite" activities. Alethea is a wave pool girl, Mikaela loves climbing, and Caleb loves slides. And Sarah, she just loves splashing! We had so much fun being together and made more wonderful memories!

Sarah and Pa. Oh how she loves him!

Caleb on one of the many slides. He couldn't get enough!

They have a wave simulator. (I guess that's what you call it) Both girls LOVED riding the waves! I couldn't believe it! My Mom said that was just like me as a kid. Trying everything, and making her nervous!

kristenleighphotography.blogspot.com

2008-07-03T12:14:00.004-05:00

One of our family friends name is Kristen. She came over yesterday to babysit for our date night, and while we were gone (as a surprise), took some pix of the kiddos. She got the kids dressed and did their hair, which is no small task. Kristen is an AMAZING photographer who does weddings and family shoots (check out her website to book a shoot!). She took some photos of the kids and put them on her website. Jen saw the pictures and immediately starting crying because they capture so much. These pictures of Sarah capture all the joy our little girl has to offer and the love between siblings!

Thank you Kristen...not only for the pix but also for serving and loving our family so much!

Check out her blog post here!

Fun Week

2008-06-28T20:10:00.005-05:00

This past week was so much fun. Crazy, but fun! Alethea participated in summer celebration. at church. She had so much fun. There were many times that I was overwhelmed with gratefulnes, to the point of tears, that my kids have this opportunity. While Alethea was at church, Mikaela participated in a dance camp. It was so great. Mikaela and Alethea don't do much apart, so it was a good opportunity for her. A girl from our church had the idea to do this for the younger siblings who are not old enough to go to summer celebration yet.

At the end of this week, we went to a Nationals vs Orioles game with some of the youth and their families from the church. We were all decked out in our Orioles gear. The kids had lots of fun playing with friends, eating peanuts, and what else, eating blue cotton candy!!

Where was Sarah during all this? She was such a trooper. She was toted all around to the camps, throw in two therapy sessions and a check up at Hopkins, she was busy too. She ended her week with a sleepover at Grandma and Grandpa's house. Nothing much has changed with her treatments. During her check up this week I learned that the plan is to have her off steroids by January. It will obviously be a very slow taper.

We are getting geared up for moving. The girls living in our townhouse are moving out this weekend, so we will begin getting the house ready for us to move in. We are looking forward to being back near friends and close to the church.

Chemo day

2008-06-19T06:41:00.006-05:00

Today is another day of chemo for Sarah. God has been so faithful on all her treatment days to keep her from the worst kinds of reactions. We are grateful for that...but we don't want to grow complacent and become presumptuous of God's blessings either. The fact is, we are ALL completely and utterly dependent creatures, whether we "feel" it or not. We need God today, just like every other day.

Jessica, Jen's sister, went with Jen to Hopkins this morning. Yesterday, when Jen and I were out on a date, Jen mentioned many times how comforting it is to have someone else there with you during these long hours. Thanks Jess! Please pray for Jen and Jess today, as well as Sarah! Thanks.

On Tuesday night, Caleb and I got some "Man Time" together. The boy is at home all day with three sisters and a mom, and so he and I need to get out once and a while for some good man time. The other night, we went to an O's game with Caleb's buddies and their dads. We went with Tyler and Jordan Kauflin, and KJ and Isaac Hydoski. Jon and Carson Smith had to bail because of sickness. We had a blast together...building memories with our boys.

Naturally, when we stopped to buy tickets, the boys picked up rocks and started throwing them at the closest non-moving target, a lamp post.

Tyler decided he wanted to walk up the stairs all by himself. Typical guy.

As you can see, Isaac wasn't sharing his food with his son, KJ. All he gave him was water.

This was the ONE thing Caleb wanted...he was talking about getting blue cotton candy all day.

We talked about more things to do in the weeks and months ahead...so more man time posts will be coming. Next up: a man time camping trip!

Catching Up

2008-06-16T20:12:00.005-05:00

I'll start with Sarah because I know that's of the most interest right now. Sarah saw her oncologist last week and after seeing her, he decided to wait another two weeks before trying to taper her steroids again. I think he would like to see a little more stability before we try again. She is doing well and we are enjoying seeing more of her personality coming out. She loves, loves, loves playing with her brother and sisters, but I think her favorite is wrestling with Daddy. I love hearing her belly laugh when he gives her "the claw". If you would pray for us this week. This is a treatment week and we will be spending two days at Hopkins.

Caleb got a scooter recently. I know I'm a little biased, but I think he's the cutest boy ever!!!

The girls took a dance class this spring through the rec department, thanks to my mom and dad. As you can see they had a very small class! It was a good intro into doing things outside the church.

Thanks to my mom again, we were able to go on the last field trip of the year to Claude Moore Colonial Farm. The kids had a great time carding wool, candle dipping, playing games, pounding corn, and being with their friends. It was really wet and muddy outside so their favorite part was getting to wear their rain boots.

One more fun little thing. We have a little nature preserve at our house. A few weeks ago we found some duck eggs under a spruce tree in our front yard, and the next week my neighbor came and told us we had a baby fawn up the hill in our back yard. I was able to go up and get some pictures before the mom came back for her baby. The kids have really enjoyed all the animals that our yard attracts.

Our last bit of big news is that we will be moving back to our townhouse in Gaithersburg sometime this summer. We decided that with everything going on with Sarah it would be best to be closer to our friends, and to put Alethea and Mikaela at Covenant Life School. They will be in first grade and kindergarden, and they are both VERY excited!! It was definitely a hard decision, but we are in faith for this big change. With all the time I spend with Sarah between Hopkins visits and therapists, we thought it would be pretty hard to homeschool both girls.

MRI results

2008-06-07T15:12:00.003-05:00

Yesterday we spent the day at Hopkins. Sarah is scheduled for MRI’s every 3 months for the next 2 years...and yesterday was the first round of MRI’s since her surgery. They were looking to see if the tumor is growing back, and they were looking at another area that they were suspicious about. We spent the day there, and for the most part, Sarah did well. She didn’t get nauseous (like she has in the past) but took a while to come out of sedation The pictures show her sleeping in bed right after the MRI (still under sedation) and then transitioning to sleeping on mom! Before long she was actively eating crackers and downing apple juice!

We got the preliminary reports from the MRI today. The doctor emailed us the following report:

“I am not sure if anyone else got in touch with you, but the preliminary result from Sarah's MRI is good: there are some "post-surgical changes" in the area where the tumor was, but nothing that looks like recurrence. The rest of the chest looks clear. I should emphasize that this is the preliminary read -- the report indicates the MRI has not yet been fully reviewed by the senior radiologist. That much being said, the result is very encouraging.”

We asked what “post surgical changes” means and he said
“Post-surgical changes = scar tissue and surgical "clips" where they stapled back together layers of muscle or tendon sheath. These are generally expected findings after surgery.”

We are very happy with this news and are receiving this as the incredible kindness of God! Thank you for praying for us yesterday.

2008-06-05T19:55:00.004-05:00

On Monday, we went with our care group to pick some strawberries, and then went back to the Sheffer's house to make some strawberry pancakes. It was a great time together!

We tried to keep Sarah out of the strawberries, but as you can see in the two pictures below, we were unsuccessful. Actually, it would be more accurate to say that Sarah has Brian Chesemore wrapped around her finger. He carried her around the strawberry patch and fed her strawberries whenever she wanted more!

As for an update on Sarah's treatment...

After increasing her steroid dosage, we began seeing some good results from Sarah. She is trying to walk more and more, though she still is pretty shaky.

We are headed back to Hopkins tomorrow morning for a follow up MRI. The MRI is scheduled for 8am. After her surgery in February, the doctor told us that she will need an MRI every 3 months for the next 2 years, just to confirm that the tumor is not growing back. Tomorrow's MRI is the first since the surgery. Please pray that the MRI comes back negative and that they find nothing abnormal.

Thanks for your continued prayers on our little girl's behalf!

The dramatic process of pulling a tooth

2008-05-29T20:18:00.003-05:00

Notice Mikaela in the back using our digital camera to take pictures? You'll hear her little voice angling for the shot...and you'll hear the click of the camera. She was hilarious, snapping about 50 pix during the whole ordeal. Actually, she took some great shots! Here are some pix from Mikaela...the 5 yr old photographer in the making...

The love of a big brother

2008-05-28T19:45:00.000-05:00

Caleb adores Sarah...and she adores him right back! His love for her is pretty cool to observe. He is very gentle with her, and loves to play with her. She calls him "fuff" and he calls her "Sarah-bearah".
Their love for each other will certainly be put to the test though. When we move back to Gaithersburg, and back into our townhouse, these two will be sharing a room together. We'll see how much he loves her when she's waking him up at 6am in the morning!

Treatment, treatment and more treatment

2008-05-25T06:09:00.000-05:00

Sarah has been working hard in her Occupational Therapy and Physical Therapy sessions. Jen and I always say that Sarah has the perfect personality to push through these sessions. She's a fighter, always has been. It's cool to see that, even at a young age, God is giving even her the grace to get through this.

Sarah loves her therapists. Its basically like a play time for her, with all kinds of new toys, puzzles and games. We had to get her some high top shoes for added stability for her ankles. The reason was that she may do some damage to her ankles in one of her attempts to walk because her legs are so unstable. We looked and looked for some shoes for her...and found out that high top shoes for 2 yr old girls aren't very common. Go figure. We FINALLY found some...the new Air Jordans come in purple and pink, AND in the size we wanted!! So much for #4 getting all the hand-me-downs. Now she gets to rock the new kicks.

This past week was another treatment week at Hopkins...both an IVIG injection and her chemo. The doctor decided to increase her steroids back to the full dose. We had started to decrease the amount...3.8mL, then to 1.8mL, then to 1.0mL. But because she has had a bit of a decline in progress, he wants her back up to 3.8mL, twice a day. We are praying that these drugs help her gain back the little bit of progress she had made.

The other night, Jen had a ladies meeting, so the kids and I had a little dance party in front of Sarah. She was laughing so hard, which is probably indicative of how stupid we probably looked. The song of choice for this particular dance party was "Turkish Delight" by DCB. My kids love that song! It was great to hear Sarah belly laugh. Other favorites include, Phil Joel's "When I Obey" and Kool and the Gangs "Celebration". Mikaela already told me that at her wedding, the song she wants to be our special dance is "Celebration".

Amazing friends

2008-05-23T19:04:00.002-05:00

We have many amazing friends. When Jen goes to Hopkins for Sarah's treatment, many people have graciously taken the other three kiddos for the day. This past chemo treatment, our good friends, the Purswells, entertained our other three kids for the day. As you can see, it was quite the day!

Scooters and bikes...in the mind of a 6 yr old, it doesn't get better than this!

Brownie making with Mrs. Purswell was a hit. Mikaela had chocolate on her face for hours.

Craft time...

Seeing Clearly

2008-05-16T19:53:00.002-05:00

Everything went great at the eye doctor yesterday. Once again Sarah was such a trooper. Between waiting to be seen and the whole appointment we were there for 3 hours. The doctor informed us that the health of her eye is fine. She is seeing fine and there is no damage that is affecting her in any way other than cosmetic. Basically he said that because of where the tumor was near her spine, it blocked some of the signals getting to her eye affecting some of the growth. Specifically, pupil size and muscles. So, the fact that her pupils are different sizes is permanent and the droopy eyelid is also permanent. We are rejoicing in the fact that there is nothing more serious wrong with her eye, and that if in the future she chooses to have her eyelid fixed, surgically that is certainly an option.

Sarah had an occupational therapy session yesterday and a physical therapy session today. Both went much better than last week. She is definitley not back to where we had seen her best growth, but definitley improved from last week. After being in contact with the doctor, we have decided to go up again on her steroid dose. In the doctor's words, "I want to maximize her recovery, and if she needs to be on a slow steroid taper to maximize her recovery, so be it. The main thing is to have her making progress in walking again like she was a few weeks ago -- regaining milestones and moving forward. I am glad that you have figured out how to get her to take the steroids. I think she needs this medicine." We totally trust him and thank God that this man is caring for our girlie.

A Bright Spot

2008-05-14T19:29:00.002-05:00

Even in the midst of all that is going on with Sarah, the Lord provided a weekend away for Dave and I. This summer is our ten year anniversary and we had planned a week away in St. Lucia origanally scheduled for this past week. When Sarah got sick we decided to cancel our trip. (Glad we got trip insurance!) When we saw that she was doing relatively well we decided to go to Bethany Beach for the weekend. It's one of our favorite places and it's close by, so we felt comfortable leaving her for four days. We had such a great time. The weather was terrible, but in some ways it was nice because we were forced to do nothing. We slept in, watched movies, went shopping, ate lots of great food, and when it wasn't raining we were able to take a few walks. We came back refreshed and ready for whatever comes next. Thanks Mom and Dad for taking all the kids, and for giving Sarah all her medicine. I know it was hard for you, but we are so grateful!
As for Sarah, we have been watching her today. After her occupational therapist sees her tomorrow morning I will give her doctor an update. She has a treatment day on Tuesday of next week, so we'll see if he wants to wait to see her then, or if he would rather see her on Friday. We will be at Hopkins tomorrow for her to see an eye doctor there. Her left eye still seems to be affected, so we will see what they have to say.

Tuesday, May 13th

2008-05-13T20:07:00.004-05:00

At the end of last week, we started to notice a decline in Sarah's motor skills again. Until that point, we were noticing Sarah improving as she worked hard to regain some of the things she lost. Then we noticed a decline in the improvement...to the point where, on Friday, she was having a hard time sitting up. We contacted the doctor right away.

There is a strong possibility that this set back is a direct result from the reduction of steroids. Our doctor is involved in determining if this is the case. We are watching her decline and her steroid in-take to determine if this is in fact the cause.

Either way, it is still very difficult to watch. Our doctor told us to prepare for set backs like this, saying that "relapses" are to be expected, but it is still very hard to watch. Your hopes get so high after you see improvement, then you are forced to go back to square 1. Our souls are doing well, we are still trusting God. The temptation is to think that "there's a light at the end of the tunnel", an end to all of this that is right around the corner. However, the further we get into this, the more we realize that we are in this for the long haul. This isn't going away anytime soon. The more we realize this, the more we see our need for grace for today and today only. God promises to give us grace for today. We don't know what next week or next month will look like. The only thing we know is what is right in front of us, and God has met us with every step.

Yesterday, our friend (Matt Lowe) underwent brain surgery to remove a tumor. He is married with 5 kids, 1 on the way. When I was putting the kids to bed tonight, we prayed for Mr. Lowe and for his family. Mikaela started her prayer by saying, "Jesus, please heal Mr. Lowe and help Emma (his daughter) to not be scared, and please help them know that you are near to them and helping them."

What a wonderful prayer. That is our prayer for our family as well...that we know God is near to us and is helping us.

Dave

Update

2008-05-08T20:04:00.001-05:00

Just wanted to give you all an update. I enjoyed an entire week off from hospital visits. I don't think there has been a week that has gone by since all this started that I haven't spent at least one day at the hospital. I didn't have any visits at all last week. Boy, was that nice!! It was so great just to be home and do normal life, like school, playing outside, and just being together!

We had a clinic visit on Tuesday. Sarah continues to do well. Her counts finally dropped, which I have come to understand is a good thing. Basically, they are trying to kill some of the "bad" cells that are causing problems. When her counts go down, that signals that the medicines are doing their jobs by killing those cells. Go figure. The doctors decided that they would go ahead and taper down her steroids some more. I communicated to them that in my opinion she is getting very little, because she spits them out. Basically, by doing this, we will be able to tell whether the steroids are a necessary part of her recovery. If she continues to improve, then we can hold off, but if she relapses then we will have to revisit the topic. If you would pray that she continues to get better without the steroids. It really is a daily battle, twice a day, to get her to take these meds. The goal will be that in two weeks, she will be completely off the steroids, and as a result three other meds as well, leaving only one remaining med that she will need to take.

I am coming to realize more and more that we are in this for the long haul. I knew that Sarah would have an MRI every three months for at least a year, but as the doctor reminded me yesterday, that she really could relapse at any moment. That does not mean that the cancer necessarily has come back, but she could get a virus that could send her body into thinking that those cells are back, and begin attacking itself again. She is working so hard with all her therapists, that it would be so sad to see all that work reversed. Starting next week, we will have three different therapists coming into our home. Two physical therapist, and one occupational therapist. The girl is being worked hard. I am so grateful to all these people. I know it's their job, but they really seem to love what they do. They get as excited as I do when they see improvement in Sarah and really do seem to enjoy working with her. (How can they not, she's just too cute!)

Working Hard

2008-04-27T08:18:00.004-05:00

We continue to see improvements in Sarah's ability to get around. We are becoming much more comfortable letting her crawl around the house on her own. She has such determination. She will get up and try to walk around, fall down, and get right up. We saw this quality in her before she got sick. It's nice to see it come in handy in this situation. She definitely is not content with just crawling. I know this is a gift that will serve her in her getting better. This picture is what she looked like after her therpay session on Friday. She was sweating like crazy! The girl worked so hard the entire hour. She spent most of the time walking around the basement with a push toy we have. She only lasted a short time with the "sitting" activities. The girl wants to be on the go!!

It happened!

2008-04-22T19:52:00.003-05:00

The tooth finally fell out. When I say fell out, I mean that literally. For as much as we tugged and pulled on that tooth, it's kind of funny how it actually came out. Dave and the kids were playing nerf guns in the house yesterday. Alethea went to hide behind a chair, all of a sudden she stopped in her tracks and said, "Did my tooth fall out?" Sure enough it had fallen out while playing the game. We were able to find the tooth on the floor and of course I put it in a bag to save. She then had to make a bunch of phone calls to tell people her big news. We think she looks so much older. I can't believe I have a little girl who already lost a tooth. Isn't she cute!

Quick update from today. Sarah had chemo today, and so far she is doing well. Doesn't seem to be affected yet. I had company again at the hospital today. Janelle came and played with us for most of the day. She was amazing. Sarah's game of choice for the day was throwing everything on the floor. She had Janelle picking things up off the floor for hours. Janelle, thanks for sacrificing your day, for buying lunch and candy, and for bringing a backpack full of new toys for Sarah to play with. I loved having you with us!

Happenings

2008-04-19T19:32:00.006-05:00

So sorry we have not done a better job this last week keeping you updated. You can be sure it's because everything is going well, and that nothing is wrong. I'll first give you the latest on Sarah. She has had a treatment the last two Fridays. Yesterday wrapped up the cycle for one particular drug. Over the last month since the actual chemo, her counts never really dropped. Good news. This next week will be very busy. She has a chemo treatment on Tuesday, occupational therapy on Wednesday, another different treatment on Thursday, and physical therapy on Friday. We also found out that starting on Monday we will be cutting her steroid dose in half!! That is great news. One prayer request would be that we would be able to give Sarah all her drugs successfully. She has discovered, no matter how far back in her throat we put it, how to spit out her drugs. Obviously not a good thing. The most exciting news of all is that over the last week she has attempted to stand and take a few steps! It is so exciting to watch her! It seems like forever since I have seen my sweet girlie walk.
This last Friday Jean came for a few hours. Once again she treated me to a great lunch from Chipotle, great conversation, and a new distraction for Sarah. Thanks for sacrificing your afternoon to be with me. Love you!!

You can check out her blog. to see more pictures from the day

Other happenings around here have been filled with lots of fun and memories. Here are a few of my favorite. Last weekend we had a 60th surprise birthday party for my dad. I can't believe we pulled it off, but the day was filled with lots of surprises, golf, and lots of old friends. It was such a great time. When Sarah first got sick we thought we wouldn't be able to do it, but it worked out that we could and she could be there too. The kids love their "Pa" as Sarah calls him. This picture is right after he walked in. The kids were so excited to be a part of the surprise.

The other big news is that Alethea is about to lose her first tooth. It has been a really big deal these last few days in particuar with everyone taking a turn at trying to pull it out. Here is the sequence of photos from tonight.

Before- it's the top one on her left. It is affectionately called "buck tooth"

This one she had just told Dave he could pull, and then wasn't so sure

She finally gave in and let him pull but to no avail.

We'll keep you up to date. This is major news in our house!

This last one I just think is cute. Dave was cutting the grass the other day, and Caleb ran inside to get his mower so he could help.

Honoring my wife

2008-04-08T09:10:00.004-05:00

We are supposed to give honor where honor is due. For those of you who know Jen, the following will come as no surprise to you. Jen is walking through this trial with a tangible reliance on her God, and it has been evident to me from the very first moment our doctor uttered those fateful words, "The MRI has revealed a tumor in Sarah's body." Since that moment, we have been in the fight of our lives, and by God's grace, Jen is winning the fight. She has walked with a calm, peaceful dependence on God that is clear to everyone who is around her.

I came across the following email that our friend, Jerusha Sheffer (who went to Hopkins with Jen for the day) sent to Jen, and I wanted to let everyone in on what Jerusha encountered while being with Jen:

It was so glad to be able to spend the day with you. I enjoyed witnessing God’s grace at work in your life and Sarah’s life. She handled her situation EXTREMELY well, such grace that there was only one point where she was really “frustrated” and that was because she just wanted to sleep! God’s grace is meeting her. And you, my friend, amazing! The way you reached out to the nurses, trying to know them, the way you patiently loved Sarah through her challenges, the way you trusted in God and didn’t freak out when it seemed her blood pressure might be up. God is clearly sustaining you AS you reach hard for Him.

Thanks for letting me come. Love & prayers,

Jerusha <><

Humbled

2008-04-05T20:16:00.003-05:00

We just wanted to take another opportunity to thank all of you who have carried this burden with us. Most importantly, how you have prayed for us. We are truly seeing your prayers being answered. We are also humbled by your generosity. Even before the Green Turtle event, there were so many of you that were quick to offer money for gas and parking. Just wanted to let you know that because of your generosity through the fundraiser, we will be able to make a wonderful donation to the Children's Neuroblastoma Cancer Foundation and have no worries about paying for Sarah's care. Some of you have asked how we plan on using the money. We plan on saving all the money and using it for things like medical bills, co-pays, gas, and parking (when you're there as much as we are, those things add up). Another thing would be having a professional cleaner come in so we can be sure the house is safe for Sarah while she is more susceptible to sickness.

We are so grateful for the support we have received throughout these last few months. There are so many times when we say to each other, how do people walk through something like this without a church, family, and friends. The way we have been cared for has truly been an expression of God's love and faithfulness to us. As much as we would like to write a personal thank you note to all of you, we realize that is not going to be a reality. So please accept this as a thank you. It hardly seems sufficient in light of all that you have done for us, but for now it will have to do. There have been so many people who have supported us. Some of you are dear friends, some of you we haven't seen in years, others are friends of our family, and others of you we have never even met. It is so neat to see how something like this draws people together. We will never stop expressing gratefulness to God for each of you, and will never tire of thanking you.

A Fun Day at the Hospital

2008-04-04T20:13:00.007-05:00

I know those two things don't really go together, but today was actually an enjoyable day. Long, but enjoyable. My good friend Jerusha got a babysitter for her kids and joined me at Hopkins for most of the day. She brought a new toy and video for Sarah, was able to get us some decent lunch, and just sat and talked with me for hours. The day just didn't seem as long with someone else to talk to besides Sarah and the nurses. Thanks for being with me today Jerusha!!

Sarah did well again today. Unfortunately, because they need to check her vital signs for the first few hours every fifteen minutes, she was not able to go to sleep until she just couldn't fight it any longer, which was very late in the day. Needless to say, it was rough for a while. I feel so bad for her because I know how tired she is, but it's not the most condusive napping environment. Of course, I think she is amazing. Even with how tired and cranky she gets, she definitely charms the nurses that care for her. We also found out today, that her counts have not dropped from the drugs. I'm still learning what all that means, but what I do know is that we are not having to be crazy careful with who she is around. So, if you see us at church, it's okay, we got permission.

Here's a picture of us at the end of our day together.

Vacation?

2008-04-03T20:34:00.002-05:00

No we're not on vacation, just wish we were. Caleb came to me this morning with his bathing suit and swim diapers and informed me that he wanted to go swimming today. This boy is too funny. He walked around all day with his bathing suit on and no shirt. He was sure we would go swimming sometime today. He even picked out a diaper and suit for his cousin Jacob. Maybe he's trying to tell me that we really need a vacation.

On to real life.... We have an all day treatment tomorrow at Hopkins. The steroids have definitely started affecting her personality, so if you would pray that I would be able to care for her effectively considering her mood swings. They will give her Benadryl again before starting the drugs to try to prevent any reaction. Last week she fell asleep for about an hour. I would love the same for tomorrow!

Thanks for praying!!!

"The Lord...does not grow tired or weary; His understanding is unsearchable. He gives power to the faint and to Him who has no might, He increases strength." Isaiah 40:28,29

The Greene Turtle

2008-04-01T20:59:00.005-05:00

On Monday was the big fundraiser for Sarah and for Neuroblastoma research. Jen and I want to thank everyone for coming! It really meant a lot for Jen and I to see our friends there with us. We know that you all are very busy, so it means even more that you would spend so much of your time supporting the cause. Some of our friends and family drove for hours to be there! We saw people we haven't seen in yrs! It was like an all day party, just hanging out all day. Thank you, again, for sharing this day with our family! We had a blast!

This entire event was the idea of my brother Brian, and his wife Jackie. They did an OUTSTANDING job putting everything together and hosting. They were the ones who coordinated with the Greene Turtle, got all the gifts donated, got there early to set up tables, blow up balloons, and do pretty much everything else. Thank you Brian and Jackie!

Our friends, the Kauflins, stopped by for dinner.

Mr. Boisvert was telling Mikaela stories from when he was growing up.

From left to right...Pa, Ra, Ma

2008-04-01T20:41:00.002-05:00

Our friends, the Lowes, came with all the kiddos! As you can see in the other pictures, there were kiddos everywhere! It was tons of fun...

These were some more of the raffle prizes. The Terps neon light was up for silent auction (donated by the owner of the Greene Turtle). The golf bag on the left had a 4-some of golf, a bag, a full set of clubs, Titlest balls and a night away at a hotel. On the right was a golf bag, and new 3 wood tight lies, another 4-some for golf, and a night away. Another basket had 4 tickets to a Nats game, a 2 night stay at a Mariott, and a gift certificate to Outback! As you can see, my brother and sister got some pretty sweet prizes for this raffle.

So, my kids learned to work the system. They quickly realized that Grandma Brewer had a tab going for food purchases. So, all they needed to do was ask a waitress for food and they got whatever they wanted on the tab! Here they are downing some dessert after lunch!

2008-04-01T20:32:00.001-05:00

There were so many really cool gifts that were raffled off.

Our friends, the Nelsons, stopped by for lunch. Sarah was able to be there for part of the day, but when it got really crowded at dinner, we had to take her out. Since she is on chemo, she can't be around lots of people.

Mikaela and "pa"

Jen's sister, Jessica, and "ma". Our kids love Jess, and they were hanging with her all day.

This restaurant is cool. They have flat screen TVs at every single booth! Pretty cool! The kids loved it. They turned the game off and put on cartoon network!

All is Well

2008-03-29T19:35:00.003-05:00

Thank you for your prayers.They are definitely being answered. Sarah continues to do well. We haven't seen any negative side effects from the chemo or any of the other drugs yet. Her appetite does seem to be increasing a bit, which is to be expected. We are enjoying some time off from the hospital with our next visit not scheduled until next Friday.

Caleb has been enjoying lots of playtime with his buddy "Ra- Ra" I love watching them together. It brings so much joy to my heart to see how much they love each other already.

The girls have been enjoying going to the play put on by the youth at our church. They went to the dress rehearsal last week, and are at the show tonight, seeing for the third time already. They plan to go next weekend too! They really love it!!! They also started a dance class this morning. My parents graciously gave this gift to Mikaela for her birthday, and are also providing babysitting or taking them to class. It's so good for them to be able to do fun stuff during this time.

We would love to see many of you at the fundraiser in honor of Sarah on Monday. Here is a look at the flier that Dave's brother and his wife put together. If you need more details, check back a few posts and you can see more there. Hope you can make it!

So far...

2008-03-25T20:38:00.002-05:00

so good. Sarah did great again today. She didn't fall asleep until the very end, but for the most part the day went well. We came home with some Zofran to try to help keep any nausea at bay. Up to this point, she seems to be tolerating everything pretty well. We got a new kind of steroid tonight to try. She was not having any part of the other one. We have so many different kinds of medicines already, we're calling it a pharmacy!!

Anything for our little girlie.....

Another Day

2008-03-25T05:48:00.003-05:00

Lamentations 3:21-25
"But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him. The Lord is good to those who wait for him."

Today starts another day. This day we start chemo. It will be another long day because in order to protect Sarah's body she has to be well hydrated. So, they will check her when we get there and won't start the injection until she is sufficiently hydrated. Once she is hydrated, the actual injection is only 1 hour, but they need to hydrate her afterwards as well for 4 HOURS!!

If you would once again pray that the side affects would be minimal. After the treatment on Friday she spent much of the evening throwing up. She was such a trooper. Also, would you pray for us as we are trying to give her three other medicines twice a day. They all taste pretty bad and she is putting up quite a fight. Can't say that I blame her. Thank you once again for praying for us.

Green Turtle fundraiser

2008-03-22T14:13:00.007-05:00

My brother and his wife, work at the Greene Turtle Sports Bar and Grille in Columbia, MD. On their own initiative, they had the idea of putting together a fundraiser for our family and for Neuroblastoma research at the restaurant! It is going to be a fun time!

There will be a number of different things going that day. First, throughout the day, there will be a raffle going on. There are a number of really cools things that will be raffled off. You simply buy some raffle tickets (as many as you want) and stick them in the jar to possibly win the prize! The more tickets you put in, the greater your chances of winning! The prizes range: gift certificates, DC/Balt area sports team tickets, Terps gear, weekend getaways, Restaurant gift certificates, vacation packages, golf for a foursome at a local golf course, etc. If anyone would like to donate a prize to be raffled off, please let us know!

In addition to the money raised during the raffle, the owners of the Greene Turtle will VERY generously donate 10% of all the food and drink purchases to the overall pot of money collected! So, just coming in, hanging out, and having lunch or dinner as a family will support the cause! In addition, we'll be selling Neuroblastoma bracelets to raise awareness and money for research.

Our whole family will be there for as much of the day as possible. We are hoping to have Sarah there as well, depending on how she is doing with her chemo. Bring the whole fam and come hang out with us! So, mark your calendar for March 31st and join us at the Greene Turtle in Columbia, MD!

Strength

2008-03-21T05:46:00.002-05:00

Deuteronomy 33
....and as your days, so shall your strength be....the eternal God is your dwelling place, and underneath are the everlasting arms.

As I prepare for another long day, this time by myself, I am trusting in the strength that I know God will provide. So grateful that Dave was able to go with me yesterday. It's so nice to have him with me for the "firsts".

Just wanted to clarify a the treatment schedule for everyone. We're new at this, so I feel like we are stumbling our way through this. The drug that Sarah got yesterday and will get again today, is called IVIG. It is not chemo. I can't tell exactly what it does without looking it up, but what I do know is that half of the drugs she is getting are used to help counteract all the bad stuff from other drugs, or from bad stuff her body is doing to itself. After today, we have the weekend off, because our doctor knew that trying to get to church on Sunday was important to us. Monday, we start steroids, and a few other drugs from home. Those will be everyday. Tuesday we will start chemo, and Friday, and for the next three Fridays after that, we will give her a drug call Rituximab, all which have to be done from the clinic. So we went from the once a month idea I had in my mind to a very full schedule. All the days at the clinic are basically 8 hour days. So, if you would pray for Sarah and I at the clinic we would be grateful. Also, would you pray for the other kids and the wonderful people that have so graciously offered to watch them for entire days. It is humbling that someone would take in another three kids for an entire day. We are grateful.

Round 1 is over

2008-03-20T14:29:00.003-05:00

Seven hours later...this is the result! Thanks for all your prayers for us today, God has answered them! Sarah's body accepted the treatment perfectly, with no adverse side affects! Round 1 is over. Round 2 begins again tomorrow morning. God is good!

So far so good...

2008-03-20T10:34:00.003-05:00

We have wireless access at Hopkins, so we can update the blog as we walk through this process. This is a picture of the little room that we'll be spending so much time in! Sarah is hooked up to the IV so we really can't do much but sit and try to entertain her as much as possible.

Sarah is 3 hours into her 1st round of treatment. She is getting something called IVIG, which is typically an 8 hr infusion. There are often side effects at the time of infusion, with typical reactions ranging from spiked fevers to high blood pressure. So, they monitor her vitals every 30 minutes to make sure her body is taking the drugs. If her body continues to accept the drugs, we may be able to get out of hear in a little less than 8 hrs.

The Chemo Journey Begins

2008-03-18T20:24:00.006-05:00

I took Sarah to her weekly clinic visit today. The big news is that her first round of chemo will start this week. Without giving you all the long details (half of which I hardly understand), this first round will consist of treatment Thursday, Friday, and Tuesday. They told me to plan on being there all day for all three days. Wow!! If you would be so kind to pray for us on those days. All day, in one spot, with an 18 month old has potential to be challenging. They said she would be given some benadryl to help on the first day. I asked if they could give a little extra to make sure she fell asleep. (just kidding...sort of) Please pray that the side effects of all the drugs will be minimal.

Thank you for your prayers. I know we've said it before, but we really do fell carried by them. There will never be a way that we will be able to thank all of you that have so graciously served us in this season. Those that have prayed, been with us at the hospital, organized meals, fixed meals, given gift cards, money for gas and parking, sent gifts, provided child care, phone calls.....thank you. I would love to write a thank you note to everyone of you. It is really hard for me to not be able to do this, but in this season, as my friends have reminded me, that is just not a reality. So this thank you will be a start. Dave and I will never tire of thanking you for all you have done for us. One more thank you to my husband. He loves his little girl so much. He and the other three kids went out the other day and bought some materials to create a safe place for Sarah to play. Now she can try to sit up, crawl, and pull herself up without the risk of getting hurt. She loves it! Even though she cannot do all these things the way she used to, she defintely loves trying. The doctor said today that this will be a great way to help her get better. Thanks babe for loving your little girl and taking the time to do this.

Keep an eye out over the next few days when Dave will be informing you of an upcoming special event. Just mark your calendars for March 31st.

Celebrating Life

2008-03-17T09:04:00.005-05:00

We've been doing a lot of celebrating this past week. We're trying to make the most of all our time at home. The first big event was Alethea learning to ride her bike without training wheels! It only took one ten minute lesson from Dave and she got it. She is really loving riding her bike on our street and all the neighbors driveways. Hope they don't mind!

This last weekend was filled with birthday celebrations. Mikaela's birthday was yesterday and Caleb's birthday is this Wednesday. The first party was on Friday at my parents house. We had a great dinner, a Lightening McQueen cake, and a trip to the circus. It was a blast. The kids loved every minute of it!

The next party came after church on Sunday. It was the first time the kids had been to church since all this started. And boy were they excited! After church we invited two families to join us at Pizza Hut for lunch. We had such a great time being with friends.

Last night, Dave's family came over for another celebration. More food and fun! Dave's sister made these great little car cakes and the kids spent some time decorating them. I'm not sure if they ever ate the cake, or if they were full from all the decorations!

The road ahead is a bit clearer now...

2008-03-11T21:25:00.006-05:00

Caleb loves his little "ra" so much!

A little photo shoot from last night. What you can't see is that they were all sitting on my stomach while I was laying down on the ground.

Jen and I spent the afternoon meeting with our doctors at Johns Hopkins. We are very grateful to say that the MIBG test came back as negative!!! This is really great news that we are receiving as a gift from the Lord! We are grateful! As of now, it looks like they got all the cancer out in the surgery, and that there are no remaining cancerous areas in her body! Although cancer returning will remain a low risk for years to come (which is a slight possibility for neuroblastoma), cancer is now on the back burner...

On the front burner now is her OMA syndrome. OMA stands for Opsoclonus (abnormal eye movement) -myoclonus (muscle twitching)-ataxia (abnormal motor coordination) syndrome. Of the 600 kids diagnosed annually with neuroblastoma , only 2%-4% have OMA. I say that because the treatment ahead of us is largely new in its usage because there are simply not a lot of kids that have OMA.

Sarah seems to have leveled off in her improvements, so treatment on the OMA is needed. At this point, being 4 weeks after surgery, this means that her immune system needs to be “reset” because it is still attacking her brain. The standard protocol for treatment is a mixture of chemo (cyclophosphamide) and steroids (Prednisone). The chemo would be considered a “low dose” of chemo, and the steroids would be considered a “high dose". She will orally take steroids at home daily, and we’ll go to Hopkins for chemo treatments. She will receive those injections once a month for 6 months, with one injection lasting 28 days. Both of these treatments will suppress her immune system completely, and the goal will be to “reboot” her immune system...like a computer would need to be rebooted (our doctor's illustration, not ours!!). The chemo will certainly take its toll on her body, but we are praying that the Lord will protect her from the more serious effects of chemo. If this kind of chemo doesn’t work to improve her OMA, then they will increase the dosage and/or try different kinds of chemo.

Jen and I are doing very well with this news. We are rejoicing in the fact that the cancer has not spread. We are rejoicing in the grace of God to us in the form of medicine. We are rejoicing in the incredible care that we are receiving at JHU. We are rejoicing because our God is bigger than cancer, chemo, and steroids...and he can chose any means he wants to, to heal Sarah. If he chooses to use the next 6 months to heal her, we will take that as the incredible kindness of our Lord.

metaiodobenzylguanidine scintigraphy

2008-03-06T07:19:00.002-05:00

So, this is the official name of what Sarah is getting today. MIBG for short. I've incorrectly called it the MIGB test on previous post, but oh well. Either one is easier to say than "metaiodobenzylguanidine scintigraphy". Today, they inject the radioactive stuff into her blood stream, and tomorrow, she will be put under and scanned to see if the radioactive isotopes have latched onto any remaining cancerous cells. Obviously, our prayer is that this test comes back negative.

More Good Bad News

2008-02-28T20:34:00.002-05:00

Psalm 54:2,4,6-7
"O God, hear my prayer; give ear to the words of my mouth...Behold, God is my helper; the Lord is the upholder of my life...I will give thanks to your name, O Lord, for it is good. For he has delivered me fom every trouble."

Today was another visit to the clinic with our pediatric oncologist. The additional good bad news is that the remaining pathology on the tumor revealed a "favorable" prognosis. Praise God!! This is good news, but the road ahead for us will remain unknown until we have the MIGB and bone scan results to determine if there are any remaining cancerous cells or spots anywhere else in her body.

We are at a point where we need to start making some decisions on how to help Sarah with the remaining ataxia symptoms. Even though her eyes are not "dancing" as much, they are not totally back to normal, and she still can't sit, crawl, or walk on her own. The doctor suggested today that we start some physical and occupational therapy before we start any type of medication for the ataxia. If her ataxic symptoms had continued to get worse after the surgery, she would have needed chemotherapy and/or steroids for treatment. However, since she has shown slight improvement, the doctors want to try the physical and occupational therapy route first. We pray that this therapy produces some positive results so that chemo won't be needed.

The next two weeks will finish out all remaining tests, and at that point we will have all the data we need to move forward with a long term plan. Things you can pray for...
- follow up with the surgeon on Wednesday
- injection for the rescheduled MIBG on Thursday, and the actual MIBG on Friday
- the following week we have a bone scan and another visit at the clinic
- pray that the remaining tests come back negative
- wisdom for us in finding the proper therapists for Sarah
- for her ataxic symptoms to go away

Jen

We call her many names...

2008-02-23T10:10:00.003-05:00

We call her...

"Silly girly" - as you can see she is always pushing to get what she wants...in this case, she wants in the picture!

"princess" - because she's a cutey!

"Trouble Trouble" - our most common name for Sarah because of the trouble she always gets into. In this picture (one of my favorites) the cabinet door was shut and her and Caleb were playing together. She thinks its hilarious when we catch her getting into trouble!

"Precious" - because she loves to snuggle with mom and dad

We are praying that she regains the abilities that she has lost. Her Ataxia is such that she can no longer walk, crawl, or sit up on her own, as well as the "dancing eyes" syndrome. These are the things we are praying for that get restored.

No MIGB test for today

2008-02-21T08:18:00.002-05:00

The test originally scheduled for today and tomorrow has been postponed. Apparently, the radio-active stuff they need for the test wasn't able to be delivered last night because of the storm. Its kind of funny to us how the world shuts down due to a dusting of snow. Oh well...we'll take the next two days off from testing and receive that as a gift from God.

The best bad news we could have received

2008-02-20T16:19:00.002-05:00

We had our appointment today with our oncologist to discuss the results of the tests done, as well as the pathology on the tumor removed from her back. We were immediately told that the bone marrow test came back negative, meaning that the cancer has not spread to the bone marrow. Praise God! Also, the initial pathology came back on the tumor and it is a kind of tumor called a Ganglioneuroblastoma, which is an intermediate tumor arising from nerve tissue. As our oncologist described, a ganglioneuroblastoma may be localized to one area or it may be widespread, but it is usually less aggressive than a neuroblastoma. It is most likely this tumor is mature and non-aggressive, as opposed to the immature, aggressive tumor that looks to duplicate itself. This was the best kind of bad news we could have received! Of all the kinds of tumors it could be, it looks like this one isn't the "mean kind" (as our doctor calls it).

Tomorrow is the first day of the MIGB scan. Sarah will be injected with radioactive isotopes tomorrow, and then have the scan on Friday that tracks them throughout her body to definitively determine if there are any other cancerous areas, or any cancerous cells left over from where the tumor was originally. She then has a bone scan next week.

Treatment for the Ataxia will most likely involve chemo and steroids. Our prayer is that this will not be needed. Over the next 3 weeks, the doctors will be looking to see if her body is responding in a good way to the tumor being gone. Her body getting better on her own won’t happen for a couple weeks, so we are in the waiting pattern now, praying she gets better on her own. If she does show signs of getting better on her own, then we may possibly avoid chemo. This is our hope.

Thanks again, for your prayers. We need them everyday, and we feel them everyday. We are grateful.

How are we doing?

2008-02-18T17:16:00.002-05:00

People have been so kind to ask how we are doing. It can be a difficult question to answer at times. I’m not sure I will be able to communicate effectively how we feel, but I’m going to try. Phillipians 4:6-7 says, “…do not be anxious about anything, but in everything, through prayer and supplication let your requests be known to God, and the peace that surpasses all understanding will guard your hearts and your minds in Christ Jesus.”
First, let me say that we are so grateful for all your prayers. We keep saying we feel “carried” by them. It is a hard to adequately explain in words, but there are so many times that we say to each other, as we are being inundated with constant information, that we are so glad people are praying because we feel like we are spending so much time in meetings that we are glad others are praying when we are unable to. Prayer is the greatest thing you could do for us! And let me say, your prayers are being answered.
Second, the verse says that the peace that surpasses all understanding will guard your hearts and minds. There have been a few times that people have asked, are you guys really doing okay? I guess surprised that with the magnitude of what we are facing that we could possibly be doing okay. While there is still much grief and sadness, we are experiencing so much peace. A peace that really I cannot understand, other than it must be from God, because left to myself this would not be how I would be feeling. I also feel like the Lord has guarded our hearts and minds in the way that we have been able to process all this information in light of the cross. Even with all the information and news we receive, our hope is not in what all the doctors have to say, but rather our hope is in what Christ has already done, on the cross. He sent his son to die for our sins. So when I think in this way, I realize that Christ has already taken care of Sarah’s greatest need. Our greatest need isn't for health, or a good diagnosis, or for the meds to work (all those are great blessings from God), our GREATEST need is for a Savior. God took care of that greatest need by crushing his son in our place, and giving to us His righteousness. If he did this, won't he also give us the grace to walk through trials?
So, how are we doing? We are clinging to the truth of God's word, we are freshly grateful for the cross, and we are grateful for the all those who are carrying this burden with us.

Jen

We are home!

2008-02-17T15:48:00.005-05:00

Sarah spent one night on the Oncology pediatric floor and was sent home. As soon as her lung x-ray came back clear, and the pain was under control with an oral medication, they said she was clear to be going home! Praise God! We are grateful to be home. The older three kiddos are still staying and "Ma and Pa's house" (Jen's parents...who have been great in taking care of the older kids), so that we can spend the night with just Sarah. As I type, Sarah is laying down on her mom in our bed. Being home is great medicine.

As we have said many, many times...thank you for your prayers! We feel them in very real ways as we fight for faith in our great Savior. As you pray, please lift up the little girl who was in the room next to us. Her name is MacKenzie. She was the sweet heart who made the crafts and pictures for our little Sarah. (see the pix) This was her second go around with a brain tumor. Her parents were a great support for us, and Jen and I have been praying for MacKenzie.

We will be back in out-patient pediatric oncology on Tuesday, Wednesday, Thursday and Friday. But for now, we are receiving being at home as a gift from God!
You can pray in the following ways for Sarah:
- The her Ataxic symptoms would dissipate. Although the doctors say this is unlikely, this is still our prayer. Sarah is still unable to walk, crawl, and even sit up on her own. Please pray that these abilities return.
- She would sleep and eat well, and regain strength before doing more tests next week.
- For McKenzie's healing