Rescheduling

Just a small update on Zoë'. Her oncologist, Dr. August, called today to let me know that he is sending her scans to St. Judes so that their specialists can look at them. If she has to have a biopsy or any other surgery that is probably where they will send her. Her oncology appointment has been rescheduled for May 5th. She also has two other appointments that day. One is an occupational therapy evaluation (a continuation of her appointment from last Monday) and one for a physical therapy evaluation.

Upon our discharge from the hospital Thursday night, we were given a short summary of events and what was found. I have copied this summary and posted it below. Zoë was admitted from the Children’s Mercy Hospital Neurology Clinic for right sided weakness. An MRI of her brain was obtained which showed a brain tumor originating from her optic nerve. We consulted several of our subspecialists, including Neurosurgery, Hematology/Oncology, Endocrinology, and Ophthalmology. Neurosurgery felt that no surgical intervention was warranted at this time. Endocrinology asked for several labs to evaluate for hormonal abnormalities that can be seen with this type of tumor. This workup was negative. Ophthalmology performed a dilated eye exam and found no abnormalities. We tested for neurofibromatosis which is a genetic condition that can have optic glioma as a finding. These results will not return for about 6-8 weeks. An MRI of her spine was obtained and was normal. Zoe did not have any neurologic problems during her admission, and had no signs of increased pressure in her skull. She did not require any medications. Zoë will have several follow up appointments in the near future. She will see her oncologist, Dr. August, on Friday. After our consultation with him, we will have a more definite answer on when she will be fitted with a semi permanent iv and when she will begin chemotherapy.

Thank you Ore City Elementary for all of the gifts and Get Well cards!!!

Homeward Bound?

At the moment, it looks like we may be able to go home late tonight.  This would make Zoë really happy.  She has been asking when she could go home all day.  We sat down with the Oncologist and discussed the possible treatments for Zoë.  A piece of good news is that Zoë may not have to have a biopsy done.  The doctors believe that this still could be a low grade optic pathway glioma.  They are sending out Zoë’s scans to get opinions from different doctors across the country.  At Zoë’s age, the treatments for this type of brain tumor are limited.  Complete removal of the tumor is not really even an option.  Trying to remove the tumor, due to its location, would most likely cause blindness and could even make things worse.  Radiation would be a better choice for Zoë, if she was not so young.  The collateral damage caused by the radiation, could cause other long term issues for her.  The doctors believe that chemotherapy would be the most effective treatment with the least amount of permanent damage.  If Zoë starts chemotherapy, it will be a process that lasts approximately a year.  They will also need to put in a more permanent IV in her chest for the duration of the chemotherapy.   After she has completed chemotherapy, they will then do another MRI to see if the size of the glioma has changed.  Low grade gliomas usually respond to chemotherapy about 60% of the time.   If her glioma does not respond then they will look more closely at the option of radiation and possible surgery to remove part of it.    

Zoë’s tumor is not likely to ever “go away” completely.   The doctors are hoping to stop the growth and reduce the size.  She has been told she has something in her brain that is not supposed to be there and we are going to do all we can to fix it.  .  She is not prohibited from doing anything.  She can still do everything she has always done.  Zoë is still that same spunky little five year old we all have fallen in love with.  She has not changed in the slightest. 

Day Three

Today has started out a little ruff for Zoë.  Before she was able to eat breakfast, she had to have more blood drawn.  They had to use a vein in her foot because her arms were too bruised from lab work over the past couple of days.  All of her lab work has come back normal except for her cortisol level.  The reason they think it may have come back abnormal was due to the time it was taken.  This was the reason for the “early stick” this morning.  The MRI on her spine has been moved from this morning to 3:00 this afternoon.  She had a consultation with several ophthalmologists yesterday afternoon.  They dilated her eyes, checked her vision and optic pathways, growth, etc. and said her vision has not be affected by the tumor.   Her doctors were worried about her vision and hormone levels because of the location of the tumor but everything is coming back normal.   We still do not have an exact time on when they are going to do the biopsy of the tumor but we know it will probably be within the next two weeks.  On the bright side of things, Zoë has become a favorite among the doctors and nurses attending her.  She has visited the playroom on her floor, made a crown with rhinestones and feathers at arts and crafts, and even made a volcano explode at the science corner.  We have played several games of Candy Land with the nurses and always seems to win by a landslide.  She is picking up on many of things the doctors and nurses do, making them do it for her when she is finished doing it for them.  A couple of these things include keeping your head still while following her finger, and squeezing her finger with each hand.  She also likes listening to her heart beat (and everyone else’s) through the stethoscope.  Zoë is getting restless and wants to go to the playroom so I’ll stop here for now.  She would like everyone to know she misses them and thinks the hospital is GREAT!

MRI in the morning

Zoë will have another MRI in the morning, this time on her spine.  They are just going to make sure that the rest of her nervous system is ok.  We are not sure what time she will go in for the MRI, but we know she will be groggy for a while after it is over.  She will also have more blood drawn in the morning so the endocrinologist will have a better sample.  These two things are Zoës least favorite, due to all the “straws” (needles) they put in her arm.  Hopefully, this part of the day will pass without too much trouble for Zoë so she can relax as much as possible before the next big step.

What we know.

As most family members may know, Zoë’s right hand has been getting weaker over the past year.  At first we thought this may be due to her being extremely left handed (as Zoë seems to take everything to a level of her own.)  Recently though, we have found out that this problem was due to a large mass growing in her brain.  The doctors gave her an early diagnosis of “Optic Nerve Glioma.”  We have recently found out that the first diagnosis could possibly be incorrect.  As far as we know, there is not any family history to suggest Optic Nerve Glioma, and Zoë is not showing the common signs that would help support the first diagnosis.  What we are left with is  some other form of tumor that may need to be treated differently.  A standard Optic Nerve Glioma would be treated with radiation and chemotherapy, as trying to remove the tumor could cause permanent loss of sight in the affected eye.  Due to the uncertainty, Zoë will have to undergo surgery to have a biopsy done on the tumor.  With this information the doctors will get a better idea of what they are dealing with and how to further Zoë’s treatment. 

Currently, Zoë is feeling fine and entertaining the hospital staff in her special Zoë way.  Kasi and I will try to keep this blog updated with any new information about Zoë.  We appreciate all the prayers and kind wishes.