July 5th, 2012

 Although my intentions of this blog was to post cool pictures of Taygen (which I have yet to figure out) for now I will use to it update everyone on the medical side of our lives.

This may be long- Lots to update on:

Last week I went for my follow-up appointment at Roswell.  My scan, 6 weeks earlier, showed a few spots of concern on my lungs and a few enlarged lymph nodes.  The doctor prescribed an antibiotic with hopes that it was an infection or inflammation.  Although my labs looked great, unfortunately the new scans showed the spots of concern were slightly larger.  Due to my history of liver failure with the Hodgkins Lymphoma they decided not to wait and schedule a surgery to remove part of the lung that shows the spot of concern.  We met with the surgeon and he described everything in detail and showed us my PET and CT scan.  I will have to be in the hospital for a few days after surgery until the lung heals.  I will also need to have a breathing test done before and after the surgery to ensure that all is well.   

If the biopsy comes back as non-cancerous I will need to have a few lymph nodes checked.  

Since when I had the Lymphoma in 2008 I had liver failure I was unable to use any chemo treatment and had only radiation treatment.  This means that if this is cancerous then I have full chemo options available, which hold a cure rate of over 90%.

While at Roswell I also met with Dermatology again where they performed another full body check.  During the exam they found another spot which looked abnormal and decided to do a biopsy.  

The Dermatologist called on Tuesday with the results- the biopsy came back as mild-moderately abnormal but not Melanoma.  This means that they got all the abnormal cells but if they had not biopsied the area it may have turned to melanoma later.

We were at Roswell Wednesday and Thursday last week- Thursday morning before all my appointments I received a phone call from Boston Children's Hospital Epilepsy Center saying they had an appointment available the next morning at 8 a.m..  With our appointment not scheduled until August 20th and being desperate for Taygen to be seen ASAP we accepted the appointment expecting to be leaving Roswell around 4 pm that afternoon and having an 8 hour drive.  We didn't end up leaving Buffalo until 7 pm and arriving in Boston at 4 a.m. leaving very little time to settle in before having to leave to the hospital for our appointment. 

While in the waiting room my mother was feeding Taygen when she started to have a cluster of spasms.  She notified the reception desk where they got a nurse and the Doctor to observe where they confirmed they looked like infantile spasms.  Our appointment lasted over an hour where we went through Taygen's history.  For being less then  year old she has quite the medical history already.  While going through her multiple diagnosis and medications the doctor asked if I work in the medical field due to understanding all the medical terms. 

A few weeks ago we went back to Burlington for a follow-up EEG before we were going to start the Vigabatrin (Seizure medication which could effect her eyes). The EEG actually looked better then the one she had before starting any medications for the infantile spasms, but she was still having multiple clusters a day so we decided the next medication we would try would be Keppra- less aggressive.  

So far the Keppra has not stopped the seizures but the new doctor in Boston's plan is to up the dose of the Keppra to the max dose fore her size and give that two weeks an if it does not decrease the number of spasms in a day we will try the Vigabatrin next.  If Vigabatrin doesn't work our next step will be to try to Ketogenic diet.  Meanwhile we are also going to go through lots of testing including a PET scan and long term monitoring with EEG to see if Taygen is a good candidate for a surgery procedure that could possibly either split the hemispheres of the brain or remove the brain tissue which is causing the seizures.  Although surgery is not our first choice of treatment, it is nice to know more about the brain activity and where the seizures are originating from and to alas have surgery as an option if medications do not work.

Her new doctor also sent in a referral for a developmental doctor along with a orthopedic doctor.  We will have many trips to Boston in the near future.
Unfortunately on our way home from Boston my car decided to break down and it currently parked in my Sister's front Yard in Albany.  Thanks to my Sister and her husband for driving us half way home and my Aunt Denise for meeting us and taking us home!  I am not in search for a new vehicle- recommendations for a car comfortable and reliable for traveling welcome!

Although life has yet to slow down I feel like we have a good plan moving forward.  I hope to be able to update everyone with great news next!

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I’ve bought a big bat. I’m all ready you see.
Now my troubles are going to have troubles with me!
-Dr. Seuss