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.

Caleb's 4th Birthday

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!

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!!!