Yesterday was Taya's 1 year follow up post treatment, and it was a long but good day.  She had 8 appointments between 7:15 am and 3:45 pm.  Many of them were concerning the abnormal blood vessels (AVMs) in her lungs and some of them focused on her recovery from cancer.

We started the morning with a nurse visit in genetics.  She went over Taya's extended family history so that the doctor would have all he needed to assess a genetic link to the AVMs.

Next was a CT, which included placement of an IV (for the CT) which was then used for a blood draw for the blood tests ordered by the pediatric oncologist.  All went well.  Watching them poke her with  a needle is never fun, but it went as smoothly as it could possibly go.  Then the CT was quick and painless after that.

We then rushed to see the genetics doctor we were referred to regarding a possible hereditary cause of AVMs.  He asked some questions and did a quick exam, but ultimately felt that there's not much we can determine until genetic testing is done.  There is only one known genetic link to AVMs which is called HHT - Hereditary Hemorrhagic Telangiectasia, so this is what we hope to test for.  He ordered a blood test which will be sent off to a lab in California.  They will contact our insurance to see if it will be covered.   We are hoping they cover it because I get the feeling it's crazy expensive.  While we were at it, he also ordered testing to see if Taya has a genetic predisposition to the cancer she had.  It is likely not genetic, but if insurance will cover the test, it would be nice to have the information. 

Then we met with the pulmonologist to discuss the AVMs, but the appointment wasn't very productive because the results of the CT scan were not completed yet.  He did mention that he met with a radiologist who read all of Taya's previous CT scans and they determined that the AVMs were present even before her cancer.  They just weren't detected or noticed on the CT scans because the cancer made them less noticeable.  This confirms everything the oncologists and radiation oncologist had been saying, that her treatments were not known to cause this.  He also ordered another echocardiogram and squeezed it into our busy schedule as a last minute addition.  She had an echo done in November, but they didn't do a specific procedure called a bubble test that the pulmonologist needed to determine the severity of the AVMs. All in all, Taya seems to be in good health and is not showing any symptoms due to the AVMs.  We will be in touch with him in the coming weeks when the results of the echo, CT and genetic testing are all in.

Then we went to the lab to have them draw blood for the genetic testing.  I hoped they would be able to use the IV, but apparently blood can't be drawn from an IV unless it's just been placed, so they had to draw from the other arm.  Again, it wasn't fun, but it went as well as possible.

Then we had some time to relax and eat lunch.  After a hectic morning of rushing to appointments, it was a nice break.

After lunch, we finally met with the pediatric oncologist.  For the first time today, we discussed cancer stuff.  Her CT scan showed nice improvement in the size of her lymph nodes as they continue to shrink over time.  It also revealed that the AVMs are the same as they were three months ago - which was good news.   Her blood work all came back in the normal range for the first time since all of this started.  We were also told that oncology doesn't need to see her for another 6 months.  For the first year, we came back for visits every 3 months, so moving to every 6 months feels like a long time.  On the one hand, it's really nice that the doctors are confident enough in her recovery to let her go for 6 months, but on the other hand, it's really easy to feel anxiety over any little thing.  Before cancer, minor symptoms were easy to brush off as nothing, but now every little thing that might point to cancer makes me anxious.  These periodic doctors' visits bring me so much peace of mind. 

That said, depending on the results of the genetic testing and the echocardiogram, the pulmonologist may want to see her again in 3 months.  So for now we wait and see.

Then we met with the radiation oncologist.  They were happy with her continued recovery and the improvements seen on the CT scan.  By the time we saw them, we had seen so many doctors that there really wasn't much left to discuss.  They won't need to see Taya for another 6 months.

Then we went to her echocardiogram.  Because she just had a comprehensive one done in November, this one only took about a half hour, less than half the time of her last one.  And the bubble test was no trouble since we left her IV in from the morning, anticipating that it might be needed later and hoping to avoid additional needles.

A big thank you for all of your prayers and support over the last year and a half!  Taya is doing well and feeling good.