Andrew Update #34
 

Thanks for checking in on the latest update for Andrew. I can tell you that it is going to be rather lengthy and I apologize ahead of time. This is one of the toughest updates that I have had to put together as I have tried three times already and scrapped each one. Right now it seems that my emotional tank is near empty but I promised you keep you in the loop. So here goes.

The last update I told you that they postponed the latest MRI due to anesthesia not feeling comfortable intubating him twice in two days. They had performed a lung sweep the day prior because he had low oxygen levels and streaking in his lungs. In between then and now, he has had another round of chemo, which he handled very well. So well in fact that he and my daughter-in-law traveled to southern Illinois to visit family and friends for about a week. During that time my son had some free time in the evenings after work to investigate post-chemo treatment options and read medical leterature, to start a plan that is evidence based, and with the input of the medical team they have come up with some interesting options that are available. As soon as I know more I will let you know.

Wednesday was the joint appointment with both the infectious disease doctor and the pulmonary doctor. The appointment was designed to help everyone understand and develop a plan to address Andrew's recurrent fevers and compromises in lung function. His specific blood work came back normal, and his chest x-rays showed some streaking, but the good news is he has never been diagnosed with pneumonia. The results from the lung sweep indicated no evidence of bacterial infection or major aspirations. This was wonderful news. The infectious disease doctor was very complimentary about Andrew's functioning and he said that his immune system wasn't being given enough credit for how well it was doing.

With all of that being said, he noted that Andrew has excessive oral secretions due to allergies and mucousitis (side effect of chemo). These secretions are particularly high after chemo. In addition, due to his vocal cord being paralyzed and weakness in his tongue, he has difficulty managing these secretions and periodically aspirates which pushes fluid into his lungs which in turn shows up as the streaky spots. When his immune system is normal, he is able to handle these infiltrations without problems. However, when his counts are low from chemo, he has difficulty managing these infiltrations and he develops a fever as his body is fighting the potential for infection.

The plan they prescribed is that Andrew will now be on prophylactic antibiotics and will be until he finishes cehmotherapy in October. He also now has an enhanced pulmonary regimen that includes the super drug Pulmozyme. My daughter-in-law reports that they can already see a difference in just this very short time period.

The next day was the MRI. I hate these weeks because I can hear the clock ticking and it seems like forever until it actually happens and then you don't know the results immediately. Well the results are in and I am happy to report the following: 1)That there are no new spots in either the brain or the spine. 2)Small brain cyst is smaller and 3)The FORMER (we like the word former) tumor site is now black and dark gray on the scan. Translation-normal brain tissue and NO NEW GROWTH! This was the third stable scan in a row and we are delighted. This is the best news that we could have heard.

With all this being said, the world of AT/RT changes rapidly. I am sorry to report that last week was a very difficult week for AT/RT patients and their families. I have mentioned a number of times that AT/RT is a very rare form of cancer and is very aggressive. With only 30 cases approximately reported in the United States in a year, you can understand the rarity. With this few cases and case studies, there are many treatment options being performed without a lot of numbers and some success stories out there. The families of AT/RT patients are a tight knit group that corresponds on a regular basis comparing notes on their little ones. While our news was wonderful and we would like to celebrate, that just isn't possible. The news last week is gut wrenching. Four families had news that wasn't so kind. Natalie and Caroline lost their battle last week while Grayson is fighting for his life. Jake has been doing very well but it was reported that he has had a reoccurrence. These youngsters are all under the age of five. I ask that you remember these little ones and their families in your thoughts and prayers. If not for the grace of God, this could be our family.

Thank you all for following along on Andrew's journey. The Padfield family is truly indebted to you for your thoughts, well wishes, gifts and especially your prayers. We are so thankful to live on for another day and pray for more tomorrows. I hope to see you at the races.

Re: Andrew Update #34
 

Mike - thanks for the update; please continue to hang in there, and know that all of us at IOW wish the best for Andrew, and for all of you.... He looks like a really tough fighter - someone we should all take a lesson from...

You're in my prayers....

Re: Andrew Update #34
 

Mike, thank you for the very detailed report on Andrew. Thank God he is doing so well. I do feel for the other families and pray that God be with them and make them strong. Andrew and all of you continue to be in our thoughts and prayers.

Re: Andrew Update #34
 

Mike, the next time I see Landon, I'll be sure and give him an extra hug. Not just for me but for you and other parents along with grandparents that are having to endure their individual crises.

Hang in there, bud.

Re: Andrew Update #34
 

Hi Mike,
Thanks for the update. Grandma Kim and I are pleased to hear your good news, but I get a bit maudlin when hearing about any children who aren't doing well. My sister and I had a discussion just today about coping with the reality that innocent children are afflicted with various maladies while many of the meanest humans on earth enjoy good health.
Continued prayers for Andrew and all of his family.

Re: Andrew Update #34
 

Mike,

Andrew, his parents, grandparents and family members remain in my thoughts and prayers. I will add the families of Natalie, Caroline, Grayson and Jake to my prayers as well.

You have said before that Anderw's journey is like being on a roller coaster ride. Well, I pray that his journey stays on the high/positive side of that ride. There are no words I can share with you to help fill your tank back up. The deaths of Natalie and Caroline had to hit your family hard. I don't even know their families and my heart aches for them.

I have donated to cancer research for years, when I lose a family member or friend to cancer I find myself questioning why there haven't been further break throughs in cancer research. The past two weeks I have found myself in that phase of my life, with the passing of my good friend Lois Matczak two weeks ago. Another friends son, Evan Schoeberlein lost his battle with a rare form of bone cancer this past week at the age of 25. An this past week a good friend found out she is going to be a first time grandma and two days later her sister was diagnosed with cancer and given less than six months to live.

Mike, you and your family have shown great strength, courage and faith during Andrew's journey, continued positive MRI reports will help replace the empty feeling you have right now. You and your family remain in my prayers.

Patti

Re: Andrew Update #34
 

Mike, Thank you once again for your update and don't ever worry about being too long. The details and the posting are good for you. Believe me I know that to be true. Wow I am VERY sad about the other children losing their battles or struggling more with them, I am ELATED that the reports on Andrew are good. God is definitely answering our prayers. Father I thank you for this board and I thank you for being able to get updates on this beautiful little boy that is fighting the battle of a lifetime. Father I thank you that you are there holding his hand, loving him, strengthening him and carrying him on the days when he is just too weak to do so himself. I thank you for the comfort you are giving not only Andrew's family but the families of the other ones as well. I thank you for renewed strength for the journey Andrew's family is on. I thank you for special love for Andrew's family and special favor to have all their needs met and I thank you for your continued faithfulness to answer prayer. Father we thank you for the next update whenever that may be. Thank you for a Grandfather that cares enough to get on here and reach out to all of us so we can storm the gates of heaven for these little ones. I love you Lord and thank you again for your continued closeness to this family. In Jesus Name, AMEN:crying:

Re: Andrew Update #34
 

Thanks again Mike, IM sorry to hear about the fellow members in treatment. I never fell off keeping updated. Andrews a gem and cherish every day.
Thanks
Chuck

Re: Andrew Update #34
 

Thank you for the update! You are all so brave and strong!:respect: I will continue to keep you all in my prayers! God is good and prayers are answered! Keep up the faith and thank you for keeping us posted.

Re: Andrew Update #34
 

Mike,

Thanks for the update. The Miller household continues to keep you and all of your family in our prayers.