A Wedding

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?

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

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...

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

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

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

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.