Since my last update, Andrew has been doing pretty well. He has had a fairly high energy level through the last couple of chemo treatments and also during his rebound week. He has two chemo rounds left and that will complete the one-year protocol that he started last October. It seems like so long ago that he started that cycle and it is now winding down.

Last week Andrew had an audiogram to assess for hearing loss. We were initially told that we could expect a 100% loss of high frequency sounds in both ears and up to a 50% loss in the range of conversational hearing in his left ear. Those losses were anticipated due to the chemotherapy and the radiation that were a part of his treatment. His last audiogram was over six months ago and due to an ear infection and also his young age, the test was somewhat inconclusive. In this audiogram, Andrew was able to fully participate and surprisingly he showed perfect hearing up to 4000kHz range. Conversational hearing is at 1000kHz, so at this time no hearing loss. The hearing loss from the chemo should have already shown up, but the effects of the radiation may still emerge over time.

Andrew also had a speech evaluation last week. The final results aren't in yet, but in general, he shows at or above age-appropriate skills in receptive language (understanding what someone is saying to him), following directions, verbal problem solving and vocabulary, His articulation of sounds is hindered somewhat by the left side cranial nerve damage, which impacts his tongue movements. Try saying the letter T without using your tongue. He also doesn't consistently use more than 2-3 word sentences, which is a milestone that most children meet by the age of 2 years old.

With that being said, my son and daughter-in-law enrolled Andrew in a language immersion program, aka "school". Andrew is a very slow-to-warm child in a new setting and he has rarely been apart from mom, dad, family, etc this past year due to treatments. He can be very stong willed (wonder where he inherited that?) and he prefers observing rather than fully participating. He is interested in everything and everyone around him, but is happy to observe rather than fully participate. Our hope is that with this program he will become more of a doer than an observer.

The treatments that have so far saved his life has also led to a host of other issues including unsteady gait, balance problems, periodic gagging, froggy voice and slow expressive language. This is the latest developmental phase in the brain tumor journey, integrating parent of a child with cancer and parent of a child with special needs. When you say a child has a brain tumor, people look at you with kindness and sympathy. When the child is bald, walks funny, can't talk fluently and sounds gurggly, and has a bulge in his head from the Ommaya reservoir, they just look at you funny. We have noticed other childred looking at Andrew and whispering, including one recently, who said that he looked like an alien (followed up by his grandmothers response that her grandson is just "brutally honest"). It is difficult to prepare yourself for these kinds of comments. Thankfully I wasn't there to hear this or perhaps I might have done something that I wouldn't be very proud of.

The next MRI will come after the last chemo round in either late October or early November. While I am on the subject of MRI's, last week was again a very difficult week for 5 others battling this dreaded disease. Brook, Amanda, Zoe and Emily all had MRI's that revealed either suspicious spots or new tumor activities. I mentioned in my last update that Jake had experienced a set back. After a very difficult protocol, his latest MRI showed 3 new brain tumors and an abnormal enhancement on his spine. His parents made the gut wrenching decision last week to not pursue further treatment. I ask for your prayers for these little ones battling for their lives right now. They have all been diagnosed with this horribly aggressive disease since Andrew has.

I want to thank so many of you who donated a book to the Jumping Jungle Jubilee. They are still trickling in and we are very grateful to each and everyone who took the time to pick out the books and spend your money for this endeavor. Once again, I thank you all for following along on Andrew's journey and I will end this marathon post with the words we continue to live by. We live for today and pray for tomorrow. Thanks for being you. Hope to see you at the races.