March 24, 2011
lunch date with mom at chick fil a
happy to be riding in daddy's truck
circle time at school
silly faces with daddy
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
October 14, 2010
October 12, 2010
September 21, 2010
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!
February 18, 2010
February 8, 2010
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!