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
