I know many of you have been praying for Emma and our family the last few days and have been waiting for an update on how things are going. It has been a pretty hard few days here and this trip certainly has taken a few turns we were not expecting.
Emma has been a trooper the last few days and continues be such a strong little girl. We have a had a whirlwind of appointments. We started by flying out early Tuesday morning and then having an endocrinology appointment. We found out there that because of the high doses of steroids Emma has been on such a high dose of steroids that her adrenal glands are no longer making cortisol and that we will need to be very careful as we ween her off steroids because if she were to get sick her body wouldn’t be able to make the cortisol it needs. This means we will always have to have a stress dose of steroids with us to give her and it could take her body up to a year after stopping the steroids to start making cortisol again.
Wednesday started with a neurology appointment and then scans. We got some decent news and some not good news from the scans. The good news was that her tumor appeared to be stable since the last scan which is good news since Emma has been off of chemo for 5 weeks now. The bad news is that Emma’s ventricles are enlarged and that she has pressure in her head because of it. By the time all of this information came in neurosurgery was unable to see us in clinic so that resulted in going downstairs for a shunt series and then going to the ER for a neurosurgery consult. After talking with the neurosurgeons, and a little prodding from Emma’s parents, they decided to admit Emma last night so that they could observe her and run more tests today.
Today started with a rapid MRI, and abdominal ultrasound. Those came back without much more information. We had an ophthalmology appointment this afternoon. We are pretty upset and discouraged about what we found out there today. Emma had been to the eye doctor in Omaha less than three weeks ago, but today’s appointment showed that Emma has lost most, if not all, of the vision in her right eye and that the optic nerve may be damaged. At this point all we know is her vision is significantly impacted and that that it will more than likely be permanent. They don’t know what has caused the sudden change in vision. They have a couple ideas about what they think happened but don’t have enough information to come up with a plan. One cause could be increased pressure has put pressure on the optic nerve causing damage or it could be atrophy of healthy cells that are dying with the tumor from the chemotherapy. Either way this is a big blow for us. We try so hard to do everything we can to help Emma keep the skills she has. Needless to say we are very upset with finding out most of her vision in the right eye is gone.
Shortly after getting back from that appointment neurosurgery came in and said they believe Emma needs to have surgery tomorrow to see what is causing the pressure. They think it may be the shunt and want to do a shunt revision. Late this evening neurosurgery came in and told us that they aren’t sure surgery is necessary at this point. We expressed to them that we are tired of watching Emma lose skills and abilities while we have no idea of what is going on. The decision that we have at this point is they will do a lumbar poke to determine what the actual pressure level is at this point. With this information they will be able to make a decision on what to do next. If it isn’t pressure we are extremely scared about what is next. If it is the shunt we know what to do and how to help. If it is just atrophy there is little to nothing we can do and that scares the hell out of us.
Between the vision news and finding out she has to have surgery we are feeling a little down tonight. It has been a really long two months and things don’t seem to be turning around. We have extended our stay and it sounds like we will be here at least another week. We did have some good news from dermatology as they feel her rash improving and are cutting back on some creams and antihistamines. The team is continuing to work on a plan for what we do moving forward with treatment after the pressure is resolved. We are praying that surgery goes well tomorrow and they are able to find the cause of the pressure and correct it. We also hope that at least a small amount of her vision will be restored if the pressure is reduced but only time will tell.
While this is not what we envisioned happening on this trip, we are glad that we are in good hands. We are so thankful for all of the messages people have been leaving on the website, Facebook and texts. We feel all of your love and support! If you have a few minutes tomorrow please say a few prayers for Emma and that surgery goes well. Thank you again for all of your prayers and support!