Andrew Update #37

Mud Packer · 9/30/08, 10:10 PM

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.

pletchfan · 9/30/08, 10:43 PM

Mike, Thanks so much for the update. We always look forward to them, good or bad. If they are good, we can rejoice with you and if they are bad we can pray harder and we know exactly what to pray for. We are honored that you are sharing such a personal journey with us. We are very glad to walk along side of you and pray for anything you want us to. Keep us posted as often as you can or as often as you feel the need to. We are ALWAYS glad to hear from you.

Charles Nungester · 9/30/08, 11:26 PM

Mike, as always, Thanks for the updates. Im glad things are going pretty well and we never know whats around the corner. I pray for this young man everyday that he may enjoy a mostly normal and long life.

Chuck

bojo20 · 9/30/08, 11:28 PM

Thanks for update.Will continue to keep Andrew in my prayers.

racegal · 10/1/08, 8:40 PM

Thank you for the update Mike! I will continue to keep Andrew and the other children in my prayers. You are all so brave.

Pat O'Connor Fan · 10/2/08, 9:18 PM

Several days ago, I did a search to see when you had last posted an Andrew Update, so I thought one would be due soon. Kim and I went to TN for an air show and a mini-vacation. This update was posted while we were there, and I missed it until I began digging through IOW tonight. Your good news brightened me some, and the portion of the report which wasn't on the positive side made me reflect upon just how lucky most of us truly are. While in Sevierville, TN, mingling with fellow warbird fans, I had a conversation with a gentleman who flew P-47s in combat in Europe during WWII. We agreed that we are fortunate to live in such a good place, and both of us mused about people who think they need to partake in some form of mind-altering substances in order to "enjoy" their lives.
Kim and I will think of Andrew often, and continue to offer prayers for his recovery.

Mud Packer · 10/2/08, 9:33 PM

Quote:

Originally Posted by Pat O'Connor Fan

Several days ago, I did a search to see when you had last posted an Andrew Update, so I thought one would be due soon. Kim and I went to TN for an air show and a mini-vacation. This update was posted while we were there, and I missed it until I began digging through IOW tonight. Your good news brightened me some, and the portion of the report which wasn't on the positive side made me reflect upon just how lucky most of us truly are. While in Sevierville, TN, mingling with fellow warbird fans, I had a conversation with a gentleman who flew P-47s in combat in Europe during WWII. We agreed that we are fortunate to live in such a good place, and both of us mused about people who think they need to partake in some form of mind-altering substances in order to "enjoy" their lives.
Kim and I will think of Andrew often, and continue to offer prayers for his recovery.

Steve,

This whole ordeal has certainly changed my perspective on life. We are certainly very lucky to live the life that we do. I think often of how many children have some type of health issues who aren't as fortunate as Andrew to be getting the excellent care that he is. Sometimes I question why, but we quickly move beyond that to more positive thoughts.

I hope you and Kim enjoyed the Great Smokey Mountains. It is such a beautiful part of the country. Kelly and I have plans to go there next month for some R & R. Will we see you at Lawrenceburg on Saturday?

Pat O'Connor Fan · 10/3/08, 12:21 AM

Quote:

Originally Posted by Mud Packer

Will we see you at Lawrenceburg on Saturday?

We will be in Terre Haute -- it is a lot closer for residents of central Illinois. I must admit that I would really prefer going to the 'Burg.

IndyBound · 10/9/08, 1:05 AM

Mike, I am just catching up on IOW news back to 9/29 when I left N.Y.; thank you for the latest update. Andrew remains in my prayers along with his family. Stay strong! I will also add the other children and their families to my prayers.

Patti

9/30/08, 10:10 PM	#1 Andrew Update #37
Mud Packer Senior Member Race Count Last Year: 59 Join Date: Jul 2007 Posts: 5,094	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. __________________ Mike Be nice to people on the way up. You might need them on the way down. Jimmy Durante

9/30/08, 11:26 PM	#3 Re: Andrew Update #37
Charles Nungester Senior Member Race Count This Year: 6 Race Count Last Year: 14 Join Date: Jul 2007 Posts: 22,060	Mike, as always, Thanks for the updates. Im glad things are going pretty well and we never know whats around the corner. I pray for this young man everyday that he may enjoy a mostly normal and long life. Chuck __________________ Charles Nungester

10/1/08, 8:40 PM	#5 Re: Andrew Update #37
racegal Senior Member Race Count This Year: 19 Join Date: Jul 2007 Posts: 16,124	Thank you for the update Mike! I will continue to keep Andrew and the other children in my prayers. You are all so brave. __________________ DD FAN-atic!! Susan St. Catherine God bless America and our troops

9/30/08, 10:43 PM	#2 Re: Andrew Update #37
pletchfan Senior Member Join Date: Jul 2007 Posts: 1,116	Mike, Thanks so much for the update. We always look forward to them, good or bad. If they are good, we can rejoice with you and if they are bad we can pray harder and we know exactly what to pray for. We are honored that you are sharing such a personal journey with us. We are very glad to walk along side of you and pray for anything you want us to. Keep us posted as often as you can or as often as you feel the need to. We are ALWAYS glad to hear from you.

9/30/08, 11:28 PM	#4 Re: Andrew Update #37
bojo20 Senior Member Join Date: Jul 2007 Posts: 266	Thanks for update.Will continue to keep Andrew in my prayers.

10/2/08, 9:18 PM	#6 Re: Andrew Update #37
Pat O'Connor Fan Senior Member Join Date: Jul 2007 Posts: 8,029	Several days ago, I did a search to see when you had last posted an Andrew Update, so I thought one would be due soon. Kim and I went to TN for an air show and a mini-vacation. This update was posted while we were there, and I missed it until I began digging through IOW tonight. Your good news brightened me some, and the portion of the report which wasn't on the positive side made me reflect upon just how lucky most of us truly are. While in Sevierville, TN, mingling with fellow warbird fans, I had a conversation with a gentleman who flew P-47s in combat in Europe during WWII. We agreed that we are fortunate to live in such a good place, and both of us mused about people who think they need to partake in some form of mind-altering substances in order to "enjoy" their lives. Kim and I will think of Andrew often, and continue to offer prayers for his recovery.

10/9/08, 1:05 AM	#9 Re: Andrew Update #37
IndyBound Senior Member Join Date: Jul 2007 Posts: 2,626	Mike, I am just catching up on IOW news back to 9/29 when I left N.Y.; thank you for the latest update. Andrew remains in my prayers along with his family. Stay strong! I will also add the other children and their families to my prayers. Patti