Andrew Update #28

Mud Packer · 5/12/08, 8:14 PM

The little guy had a real tough week last week. I mentioned that this latest chemo round was a confined hospital stay that my daughter-in-law was dreading. They had to check in on Tuesday at 6:45 AM for a 7:45 AM lumbar puncture. They had a delay as the pager # for the person assigned to do the procedure was invalid. They contacted the backup person and she was at home in her pj's. By they time she arrived at 10:00 AM they had lost the OR and the anesthesiologist to another procedure.

Once everyone was in place the anesthesiologist refused to do the case because Andrew has a paralyzed vocal cord and my daughter-in-law's unwillingness to have him intubated for a 2 minute procedure. My daughter-in-law hates confrontation but she is the voice of a 2 year old so she is getting much better at this. I am so thankful and proud of her for standing up for Andrew.

They were back ready to go by 1:00 PM but they were doing another test on Andrew and they again lost the OR. By 3:30 PM they had another opening however the pharmacy hadn't gotten around to making the chemo meds so they finally got started at 6:00 PM.

They finally got him settled into a room and later on that night a piece of tubing ruptured sending the chemo mixture onto my son's leg. Thankfully it didn't get on Andrew as this stuff burns and at least my son knows how to react. That sounds bad doesn't it. Sorry son. So at 10:30 PM they have doctors and nurses and hazardous waste people scrambling to clean up the room. What a wonderful day.

The next day they received the results back from the genetic testing that my son, daughter-in-law and Andrew had taken last month. They were trying to find out more answers as to how this happened. ATRT has a genetic component where a tumor suppressor gene is deleted from Chromosome 22. It is possible that this deletion 1)only occurs in the tumor, 2)also occurs in the DNA of the child, or 3)also occurs in one of the parents. The results confirmed exactly what we didn't want to hear. Both my son and daughter-in-law do not have the deletion. However, Andrew has the deletion in his tumor as well as in all of his cells, meaning that he has Rhabdoid Predisposition Syndrome. These results confirm that Andrew is predisposed to develop additional cancerous tumors in the future, particularly in the brain, spine and kidneys. It certainly isn't the news that we wanted to hear.

The rest of the week was pretty much a downer as here is a 2 year old who has had a lot of freedom to walk, run and play and now they are trying to confine him to a bed, hooked up to the pole. My son and daughter-in-law had a difficult task indeed.

They were discharged from the hospital late Friday and by the weekend Andrew was rebounding a little. We have a tough time seeing him hurting and uncomfortable from the chemo round. It crushes us to think that our goal could be time.

Thank you all again for checking in on the little guys journey. Thoughts, prayers and well wishes are always welcome as Andrew can't have enough of them. Sorry for the book again, but I can't seem to update any shorter.

Dwight Clock · 5/12/08, 8:20 PM

Mike, no need to ever apologize for writing about Andrew. We are with him as much as we can be through our prayers and your reports. May God continue to be with Andrew and your entire family.

Charles Nungester · 5/12/08, 8:58 PM

Mike, we know there are tough times, some rougher than other.

My prayers are that we never have to hear the roughest.

Keep fighting Andrew!
Chuck

pletchfan · 5/12/08, 9:53 PM

Thanks for the update on Little Andrew. I have not posted in the past but I have read and prayed. We will continue to pray and you can type a novel if you need to. This lets us know exactly how to petition God. Keep us informed. Father we thank you for children, they are a gift from your hand. This little one needs a miracle that only you can give. I would ask that you reach down in your infinite mercy and touch this little boy and heal this little body, I pray that you would dissolve all tumors and smite any further ones that would try to form. Father thank you for strength for the parents, grandparents and friends and family that are involved in this journey. Thank you for wisdom for the doctors and nurses on exactly what to do and how to do it. Father just watch over all involved and hold this whole situation in your hands until the complete miracle comes. In Jesus Name, AMEN

Knoke77 · 5/13/08, 8:37 AM

Amen.........

Keep your head up Andrew and family and stay strong!

nonwing · 5/13/08, 10:29 AM

I'm so sorry to hear the results of the tests and what might be your challenges on down the road.

I must say that I've been battling cancer since 2002 and the drugs and procedures that are available now, were only in trials when I first started radiation and chemo. In fact, I'm on drugs now that were not available in '02 and so far have been very affective, not a cure, but at least keeping the disease in check. I know it is hard to hang your hat on a miracle drug, but I've been amazed at what has been done in just 6 years.

Hang in there and my thoughts are with you.

George Wilkins

5/14/08, 4:02 AM

As "pletchfan" I Have Not Posted But Have Read On Occasion.(brett Burdettes Mom)but This Update I Read On Andrew Has Changed That. I Had To Extend Our Prayers To Andrew And His Family. Stay Strong! Little Man !

Mud Packer · 5/14/08, 8:33 AM

I appreciate everyone's prayers for Andrew. As I mentioned, he can't have too many. I especially appreciate everyone's comments and many times I re-read them as they provide comfort during the difficult times. We are so fortunate in the fact that so many people, so many whom we don't even know, have taken to following along on Andrew's journey. In looking at the post count, I am amazed at the number of people who read the updates. All I can say is thank you very much as I won't live long enough to personally thank everyone who have participated in this adventure. I hope to see many at the races to do just that.

5/12/08, 8:14 PM	#1 Andrew Update #28
Mud Packer Senior Member Race Count Last Year: 59 Join Date: Jul 2007 Posts: 5,088	The little guy had a real tough week last week. I mentioned that this latest chemo round was a confined hospital stay that my daughter-in-law was dreading. They had to check in on Tuesday at 6:45 AM for a 7:45 AM lumbar puncture. They had a delay as the pager # for the person assigned to do the procedure was invalid. They contacted the backup person and she was at home in her pj's. By they time she arrived at 10:00 AM they had lost the OR and the anesthesiologist to another procedure. Once everyone was in place the anesthesiologist refused to do the case because Andrew has a paralyzed vocal cord and my daughter-in-law's unwillingness to have him intubated for a 2 minute procedure. My daughter-in-law hates confrontation but she is the voice of a 2 year old so she is getting much better at this. I am so thankful and proud of her for standing up for Andrew. They were back ready to go by 1:00 PM but they were doing another test on Andrew and they again lost the OR. By 3:30 PM they had another opening however the pharmacy hadn't gotten around to making the chemo meds so they finally got started at 6:00 PM. They finally got him settled into a room and later on that night a piece of tubing ruptured sending the chemo mixture onto my son's leg. Thankfully it didn't get on Andrew as this stuff burns and at least my son knows how to react. That sounds bad doesn't it. Sorry son. So at 10:30 PM they have doctors and nurses and hazardous waste people scrambling to clean up the room. What a wonderful day. The next day they received the results back from the genetic testing that my son, daughter-in-law and Andrew had taken last month. They were trying to find out more answers as to how this happened. ATRT has a genetic component where a tumor suppressor gene is deleted from Chromosome 22. It is possible that this deletion 1)only occurs in the tumor, 2)also occurs in the DNA of the child, or 3)also occurs in one of the parents. The results confirmed exactly what we didn't want to hear. Both my son and daughter-in-law do not have the deletion. However, Andrew has the deletion in his tumor as well as in all of his cells, meaning that he has Rhabdoid Predisposition Syndrome. These results confirm that Andrew is predisposed to develop additional cancerous tumors in the future, particularly in the brain, spine and kidneys. It certainly isn't the news that we wanted to hear. The rest of the week was pretty much a downer as here is a 2 year old who has had a lot of freedom to walk, run and play and now they are trying to confine him to a bed, hooked up to the pole. My son and daughter-in-law had a difficult task indeed. They were discharged from the hospital late Friday and by the weekend Andrew was rebounding a little. We have a tough time seeing him hurting and uncomfortable from the chemo round. It crushes us to think that our goal could be time. Thank you all again for checking in on the little guys journey. Thoughts, prayers and well wishes are always welcome as Andrew can't have enough of them. Sorry for the book again, but I can't seem to update any shorter. __________________ Mike Be nice to people on the way up. You might need them on the way down. Jimmy Durante

5/12/08, 8:58 PM	#3 Re: Andrew Update #28
Charles Nungester Senior Member Race Count This Year: 6 Race Count Last Year: 14 Join Date: Jul 2007 Posts: 21,731	Mike, we know there are tough times, some rougher than other. My prayers are that we never have to hear the roughest. Keep fighting Andrew! Chuck __________________ Charles Nungester

5/14/08, 8:33 AM	#8 Re: Andrew Update #28
Mud Packer Senior Member Race Count Last Year: 59 Join Date: Jul 2007 Posts: 5,088	I appreciate everyone's prayers for Andrew. As I mentioned, he can't have too many. I especially appreciate everyone's comments and many times I re-read them as they provide comfort during the difficult times. We are so fortunate in the fact that so many people, so many whom we don't even know, have taken to following along on Andrew's journey. In looking at the post count, I am amazed at the number of people who read the updates. All I can say is thank you very much as I won't live long enough to personally thank everyone who have participated in this adventure. I hope to see many at the races to do just that. __________________ Mike Be nice to people on the way up. You might need them on the way down. Jimmy Durante

5/12/08, 8:20 PM	#2 Re: Andrew Update #28
Dwight Clock Senior Member Join Date: Jul 2007 Posts: 1,233	Mike, no need to ever apologize for writing about Andrew. We are with him as much as we can be through our prayers and your reports. May God continue to be with Andrew and your entire family.

5/12/08, 9:53 PM	#4 Re: Andrew Update #28
pletchfan Senior Member Join Date: Jul 2007 Posts: 1,116	Thanks for the update on Little Andrew. I have not posted in the past but I have read and prayed. We will continue to pray and you can type a novel if you need to. This lets us know exactly how to petition God. Keep us informed. Father we thank you for children, they are a gift from your hand. This little one needs a miracle that only you can give. I would ask that you reach down in your infinite mercy and touch this little boy and heal this little body, I pray that you would dissolve all tumors and smite any further ones that would try to form. Father thank you for strength for the parents, grandparents and friends and family that are involved in this journey. Thank you for wisdom for the doctors and nurses on exactly what to do and how to do it. Father just watch over all involved and hold this whole situation in your hands until the complete miracle comes. In Jesus Name, AMEN

5/13/08, 8:37 AM	#5 Re: Andrew Update #28
Knoke77 Senior Member Join Date: Jul 2007 Posts: 381	Amen......... Keep your head up Andrew and family and stay strong!

5/13/08, 10:29 AM	#6 Re: Andrew Update #28
nonwing Member Join Date: Jul 2007 Posts: 208	I'm so sorry to hear the results of the tests and what might be your challenges on down the road. I must say that I've been battling cancer since 2002 and the drugs and procedures that are available now, were only in trials when I first started radiation and chemo. In fact, I'm on drugs now that were not available in '02 and so far have been very affective, not a cure, but at least keeping the disease in check. I know it is hard to hang your hat on a miracle drug, but I've been amazed at what has been done in just 6 years. Hang in there and my thoughts are with you. George Wilkins

5/14/08, 4:02 AM	#7 Re: Andrew Update #28
TANYA BURDETTE Posts: n/a	As "pletchfan" I Have Not Posted But Have Read On Occasion.(brett Burdettes Mom)but This Update I Read On Andrew Has Changed That. I Had To Extend Our Prayers To Andrew And His Family. Stay Strong! Little Man !