Four years ago today, our lives changed forever. It is a day I will never forget. As Charles Spurgeon says, "In losses, crosses, and troubles, you realize God's presence more conspicuously than ever. The Bible does not say that when you walk along the flowery path or rest on the soft green bank, "I will be with you." It does not say that when you walk on the close cut grass, which feels like carpet under your feet, "I will be with you." I do not remember reading a Scripture promise like that. But God does say, "When you pass through the waters I will be with you" Isaiah 43:2 He gives a special promise for a special time of trial. To meet the doubts of His troubled child, He says, "Fear not, for I have redeemed you; I have called you by your name; you are Mine."

How true we have found this to be. God has been with us through every up and down over these last four years. Four years later, though still daily battling a muscle disorder and getting monthly treatments at Hopkins, Sarah is a healthy and active little 5 yr old girl. She brings tons of happiness, trouble, and love to our family and friends.

Deuteronomy 33:25-27
...and as your days, so shall your strength be. There is none like God, O Jeshurun, who rides through the heavens to your help, through the skies in his majesty. The eternal God is your dwelling place, and underneath are the everlasting arms.

Long Overdue

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

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

Everyone's first day of school!

Alethea- 3rd grade

Mikaela- 2nd grade

Caleb- kindergarten

Sarah- preschool

Anyone out there?

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!

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

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

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!!

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!!

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!

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

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!!

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

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!

Ag Farm

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.