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Saturday, December 22, 2012 4:53 PM CST

Happy Birthday, Andrew!!!

We love you and miss you.

Mom, Dad, Sarah and Katie

Thursday, December 22, 2011 6:53 AM CST

Happy Birthday, Andrew

Love,

Mommy, Daddy, Sarah and Katie

Monday, May 9, 2011 8:20 AM CDT

The new picture of Andrew is from April 2004…just 2 months before he was diagnosed. I didn’t have any extra copies of this picture for some reason…not sure where they all went. Anyway I called the company that took the pictures that year (chipshots photography) and Stuart was so nice and helpful…he went back through their archives and found the disk and mailed it to me. It was always one of my favorite photos of Andrew and I just wanted to share it.

Anne

Wednesday, December 22, 2010 11:21 AM CST

Happy Birthday, Andrew.

Love, Mommy, Daddy, Sarah and Katie.

Tuesday, December 22, 2009 10:18 AM CST

Happy Birthday, Andrew.

Love,

Mommy, Daddy, Sarah and Katie

Wednesday, October 7, 2009 9:55 PM CDT

Yes, it has been a while since we have updated…Katie is 7 months old and doing well. Sarah is playing soccer and enjoying 3rd grade. I also wanted to let everyone know about Knockin’ Cancer Out of the Ballpark…it will be here in less than three weeks. I have attached all of the important information below. We hope to see you there!



Dear Family and Friends:

The 5th Annual “Knockin’ Cancer Out of the Ballpark” will be on Sunday, October 25th on the campus of Samford University at the Samford Softball Complex. We appreciate your past support and we hope that you will once again consider attending Knockin’ Cancer Out of the Ballpark this year or making a financial contribution. All proceeds directly benefit the UAB Neuro-Oncology Research Program at Children’s Hospital. Knockin’ Cancer Out of the Ballpark has raised over $90,000 – all of which has gone directly to the pediatric brain tumor research. We hope to have another great fund raising year. We hope you will join us help to fund this important research being done here in Alabama.

EVENT DETAILS
This year’s event will again provide much entertainment for the whole family. We will have plenty of softball, plus we will have games and activities for the children. We will also have special visitors from Hand-In-Paw. The games will start following the Ceremonial First Pitch which is scheduled for 2 p.m. The Ceremonial First Pitch is when we encourage all of the Neuro-Oncology patients to come to the event and throw out a First Pitch.
The games will follow in this order:
2:15 p.m.: UAH vs. Jeff State
3:30 p.m.: Samford vs. UAB

Fun zone will be open from 1 p.m. until 4:30 p.m. – giving everyone plenty of time to enjoy the day!

Please consider making a monetary contribution or an in-kind contribution to this event. Your donation is tax-deductible and you will receive a receipt from Children’s Hospital of Alabama. Please make checks payable to Children’s Hospital and include Softball Benefit in the “For” line on your check.

If you have any questions concerning “Knockin’ Cancer Out of the Ballpark,” please feel free to contact us at kcootb@chsys.org. The research being done today is vital and your donation does make a difference.

Thank you in advance for your support!!

Best regards,


Bruce, Anne, Sarah and Katie Long Jim, Sherry, Allison and James Howell

Mailing Address for Knockin’ Cancer Out of the Ballpark Contributions:
Children’s Hospital Foundation
ATTN: KCOOTB
1600 7th Avenue South
Birmingham, AL 35233

Saturday, February 21, 2009 6:32 PM CST

Just wanted to let everyone know that Katherine (Katie) Mason Long arrived Feb. 20th at 7:09 am. She was 6 lbs 13 oz and 19 inches long. Katie and Anne are doing great. Sarah has really taken to the job of big sister...she learned it from the best big brother.

Bruce

Saturday, February 21, 2009 11:10 AM CST

Just a quick update to let everyone know that Katherine (Katie) Mason Long was born Feb. 20th 2009. She was 6 lbs 13 oz and 19 inches long. Mommy and Katie are doing great and Sarah has really taken to the job of big sister...she learned how to do it from the best big brother.

Bruce

Monday, December 22, 2008 6:45 AM CST

Happy Birthday, Andrew

Love,

Mommy, Daddy and Sarah

Thursday, November 6, 2008 9:18 PM CST

Thanks to everyone who supported Knockin’ Cancer Out of the Ballpark – it was a great success!! The total raised was $17,000 – all of that money will benefit brain tumor research at Children’s Hospital.

Thank you also to everyone who was involved in the oil portraits of Andrew and Sarah. What a wonderful gift…we were overwhelmed by the kindness of so many people. As you can see we got them this week and we couldn’t be more pleased with them. There is a picture of Sarah’s in the gallery. The photos don’t do the paintings justice so please stop by if you’d like to see them. Special thanks to everyone at Arthur King Designer Portraits in Montgomery.

Thanks also to the Huntsvillers who put together a memory book with photos of Andrew and memories and stories from lots of friends and family. It has been great to read and enjoy – thanks to everyone who contributed a memory or story to the book.

Sarah is doing well – she has just finished up an enjoyable soccer season and is having fun at school and with her friends.

Finally, the last bit of news is that we are expecting a baby. Our new little girl is due at the end of February. We are very excited and Sarah is looking forward to being a big sister!

Thanks for checking on us.

Anne

Sunday, October 5, 2008 9:27 PM CDT

September 20th marked one year without Andrew. I guess neither Bruce nor I was up for writing about it…just couldn’t think of anything appropriate to say. Although that date will always mean something to us, it’s really just another day without Andrew and every one of those days is hard. Thanks to everyone who took time to check on us.

The 4th Annual Knockin’ Cancer Out of the Ballpark will be here in less than two week. I have attached all of the important information below. We hope to see you there!



Dear Family and Friends:

The 4th Annual “Knockin’ Cancer Out of the Ballpark” will be on Saturday, October 18 on the campus of Samford University at the Samford Softball Complex. We appreciate your past support and we hope that you will once again consider attending Knockin’ Cancer Out of the Ballpark this year or making a financial contribution. All proceeds directly benefit the UAB Neuro-Oncology Research Program at Children’s Hospital. Knockin’ Cancer Out of the Ballpark has raised over $70,000 – all of which has gone directly to pediatric brain tumor research. We hope to have another great fund raising year. We hope you will join us help to fund this important research being done here in Alabama.

EVENT DETAILS
This year’s event will again provide much entertainment for the whole family. We will have plenty of softball, plus we will have games and activities for the children. We will also have special visitors from Hand-In-Paw. The game schedule will start following the Ceremonial First Pitch. The Ceremonial First Pitch is when we encourage all of the Neuro-Oncology patients to come to the event and throw out a First Pitch.
The games will follow in this order:
11:00 a.m.: UAH vs. UAB
1:15 p.m.: Samford vs. Jeff State
3:30 p.m.: UAB vs. Samford

Fun zone will open at 10:00 a.m. giving everyone plenty of time to enjoy the day!

Please consider making a monetary contribution or an in-kind contribution to this event. Your donation is tax-deductible and you will receive a receipt from Children’s Hospital of Alabama. Please make checks payable to Children’s Hospital and include Softball Benefit in the “For” line on your check.

If you have any questions concerning “Knockin’ Cancer Out of the Ballpark,” please feel free to contact us at kcootb@chsys.org. The research being done today is vital and your donation does make a difference.

Thank you in advance for your support!!

Best regards,


Bruce, Anne and Sarah Long Jim, Sherry, Allison and James Howell

Mailing Address for Knockin’ Cancer Out of the Ballpark Contributions:
Children’s Hospital Foundation
ATTN: KCOOTB
1600 7th Avenue South
Birmingham, AL 35233

Thursday, September 4, 2008 9:46 PM CDT

We attended a memorial service at Children’s Hospital last Saturday – the hospital sponsors the service twice a year to remember children who have lost their lives to childhood cancer and blood disorders. The service was very nice and it was nice to see some of the people who helped take care of Andrew and some of the other families we met along the way. Of course, it is also very sad to see all of the pictures of the precious children. Nurses, doctors and staff members who knew the children write some memories that they have and these are read at the service. This is what they wrote about Andrew:

Andrew was a master of video games and UNO. He would often use his “mind control” to win a game of UNO. He is also remembered for his love of telling jokes. Typically after the punch line Andrew would say, “Get it??” and give you a big sly grin.

We recall an incident when Andrew thought Dr. Bryant was calling him a giant lizard when she told him “he was such a comedian”. Once he realized a comedian was someone who tells joke for money and a chameleon was the lizard, he held out his hand and said “pay up”.

Andrew was intelligent and so funny. Having a conversation with Andrew was like having a conversation with a wise old man. That is, if the wise old man had a whoopee cushion!

September is childhood cancer awareness month and the 12th Annual Kandles for Kids will be held this Sunday, September 7th. It is at Liberty Park at the base of the statue and starts at 6 with candle lighting at 6:45 if you would like to join us.

Finally, we are having the 4th Knockin’ Cancer Out of the Ballpark event to benefit pediatric brain tumor research on Saturday, October 18th at Samford University. I will post more details soon.

Thanks for checking on us. -Anne

Sunday, August 24, 2008 9:49 PM CDT

I am a little late in getting this information out out as the event is coming up this Wednesday. If you are able please consider shopping at Whole Foods this Wednesday. See below for details. Thanks, Anne

I am so excited to share the news that the UAB Division of Pediatric Hematology and Oncology at Children's Hospital has been chosen as the beneficiary of the Whole Foods Market 5 percent Day. Children's was chosen as the charity for the 3rd Quarter of 2008. We will get 5 percent of the total register tally for Wednesday, August 27. We will also have the opportunity to hand out materials and to raise awareness for the services provided by the Division.



Please encourage your family and friends to shop at Whole Foods Market on Wednesday, August 27. Please feel free to forward the flyer.



Here is the basic information about Whole Foods Market:

Whole Foods Market

3100 Cahaba Village Plaza

Birmingham, AL 35243

205.912.8400



Store Hours: 8:00 a.m. to 10:00 p.m. on Wednesday, August 27



To get to Whole Foods Market:

o From I-459 Exit Hwy. 280 West. The store is located at the intersection of Green Valley Road and Hwy. 280. The store is located on your right.



o From Downtown Birmingham take Hwy 280 East to the intersection of Green Valley Road. The store will be located on your left.



Thank you for your support and I hope that you will be able to join in the fun at Whole Foods Market on August 27.

Wednesday, July 30, 2008 9:27 PM CDT

Thanks to everyone who supported the Conquer Childhood Cancer Act – President Bush signed it into law yesterday.

As you can see from the photo, Andrew’s marker is in. It took us a while to decide on what we wanted but we are pleased with it.

Bruce’s mom has been working on a quilt made from Andrew’s favorite clothes. It is now complete and there is a picture of it in the photo gallery. She did a wonderful job – with lots of help from Bruce’s sisters and it is something we will always treasure. If you knew Andrew you will likely recognize some of the clothes that she used. I also have a sweet story to share involving the quilt. Since Andrew’s passing my mother has told Sarah that when she finds money, it was left for her by Andrew…”pennies from heaven”. So, when Sarah finds money she always mentions Andrew. When we were in Huntsville visiting and picking up the quilt – the quilt was spread out for us to look at and Sarah crawled on the quilt and stared going through the pockets. She found money in two of Andrew’s pockets – we were all quite surprised and Sarah said “Andrew definitely left that money for me”.

Thanks for checking on us. -Anne

Sunday, July 20, 2008 9:06 PM CDT

Our precious friend Sebastian went to heaven yesterday – we will always remember him for his spunky personality and the way he fought the fight. We were blessed by his family’s friendship during a difficult time in all of our lives. Please continue to keep them in your prayers.

Thank you to all of the people who have written letters and made phone calls encouraging senators and representative to support the “Conquer Childhood Cancer Act” – it has passed both the House and Senate and is awaiting President Bush’s signature. I have copied the release from CureSearch below if you would like to read the details.

As always, thanks for checking on us. -Anne

CureSearch Praises Passage of Landmark
"Conquer Childhood Cancer Act"
by Unanimous Consent in the United States Senate

Children with Cancer and Their Families to Benefit from Legislation
July 17, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.
The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.
"Too many young people's lives were cut short by cancer, but their hopes were not," said Reed. "We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs."
Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.
"Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer," said Coleman. "I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90 percent of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.
"The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," stated Gregory Reaman, MD, Chair of the Children's Oncology Group.
"On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer."
"We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed," said Stacy Pagos Haller, Executive Director of CureSearch.
Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.

Wednesday, July 2, 2008 9:59 AM CDT

Hi Friends,

Sarah had a great time at Camp SAM – she was such a big girl and didn’t even miss mom and dad at bedtime. We’ve had one trip to the beach and have another one coming up. We miss Andrew all the time but the beach seems a little harder since that was his favorite place on earth.

Several months ago I posted information about the Conquer Childhood Cancer Act. It has passed the House but is having some trouble in the Senate. I am asking for your help – it only requires a few phone calls. The information below was taken from our friend JJ’s web page – his father, Jim, has done a great job of keeping up with the legislation and keeping everyone informed. Please read his post – your help would be greatly appreciated. Thanks, Anne

Everyone, I am in need of your help.

I have gotten some pretty sound advice from someone who used to work on Capitol Hill as to how we need to proceed in getting S-911 moving. Word has it that there are three Senators who have placed “a hold” (another story into itself) on this bill. If true, what we need to do is call their offices. I have made these calls and, lo, each health staffer was either out of the office or in a meeting and I was referred to voice mail.

The person I talked to stated “its sounds like they’re ducking you” and recommended a letter to the editor of the local papers within their states. I asked if I should first pass on this info to others and here’s his reply…

Flooding them with calls can also be a good attention getter. I'd suggest your callers follow your lead and also call for "I Could Be Your Child." However, know that the staffers have caller ID. In addition to calling DC you may also want to have callers reach out to the various state offices. When state offices get a lot of calls on an issue they'll often make a member or senior staff aware and that might help, too. Good luck."

Here’s where I need your help… before I go and write a letter, I would like to be able to back up my words with numbers. I need as many of you as possible to call the offices of Senators

Coburn (Oklahoma) ~ 202-224-5754. Health Staffer: Evan Feinberg.
Kyl (Arizona) ~ 202-224-4521. Health Staffer: Brain Polick
Enzi (Wyoming) ~ 202-224-3424. Health Staffer: Keith Flanagan

Be very polite and simply ask “what is the Senator’s position is on S-911”. When I called, they asked where I was calling from. My reply was “For I Could Be Your Child, a grass roots organization on Pediatric Brain Tumor Awareness…”. As suggested above, it might be beneficial if you use something similar that best fits the foundation you most support. Chances are, they’ll duck you as well and you’ll get voice mail. If so, please let me know the dates and times you called as well as if you received a call back (which I have not had yet) or not. I’ll give them a week or so and once I get a good solid number where it shows that they have no intentions of returning our calls or giving us the information requested, I’ll draft the letter.

It would be extremely beneficial if citizens from these three states called. The Senators may be able to duck those of us not from their state but will have a difficult time explaining why they won’t answer to their own constituents. So, if anyone happens to know someone from there, please pass this on.

Thanks,

Jim

Thursday, June 5, 2008 10:18 PM CDT

Hi Friends,

Our summer is off to a good start and we are staying pretty busy. Sarah is going to Camp Smile-A-Mile sibling camp tomorrow. She will be there for the weekend. She went last year and had a great time except for missing mom and dad a little at bed time. She is a little apprehensive about going this year but I know she will have a great time.

Please keep our friend Sebastian in your prayers – there is a link to his web page below.

The new photo is one of my favorites – at the beach - 2003 I think. Andrew loved being at the beach more than anywhere on earth. We have so many wonderful memories from all of our trips.

Thanks for checking on us. - Anne

Monday, May 12, 2008 10:33 PM CDT

The Birmingham News did a really nice article on the dedication that was in today's paper (Wed. South Section) if you want to read it here is the link: http://www.al.com/birminghamnews/stories/index.ssf?/base/community/1210753072284600.xml&coll=2&thispage=1
The pictures with the article were great but unfortunately you can't view them online.

Hi Friends,

The track and field dedication at East was so wonderful – special thanks to all of those who made it happen. Dr. Richardson opened with some comments about the dedication, Andrew’s buddy Graham read a very sweet poem, the third graders sang “I’ll Fly Away” and the kids released 100 butterflies. It was all very sweet and touching.

The new photo is from May Day Play Day last year – Andrew having a great time with his super soaker. There are new photos in the gallery of the signs at the track and Sarah releasing her butterfly.

As always, thanks for checking on us. - Anne

Wednesday, May 7, 2008 7:35 AM CDT

Hi Friends,

I wanted to let you know that the track and field at Vestavia East will be dedicated to Andrew. There will be a short ceremony this Friday morning at 8. It will be at the start of May Day Play Day and will take place on the fields between East and Vestavia Methodist Church if you would like to attend. We are so touched that Andrew will be honored in this way.

Please keep the family of Avery Ann Hildreth in you prayers. She was a precious friend of ours who had been battling a brain tumor for most of her life. She is now healed. You can visit her web page at www.averyann.net

As always, thanks for checking on us. -Anne

Saturday, April 19, 2008 7:36 AM CDT

Hi Friends,

It has been a while since I updated. There is not too much going on - Sarah did not want to sign up for any sports or activities this spring but she wants to play outside every day and thinks she needs a friend over to play at least 6 days a week.

The year books arrived at school yesterday and there is a dedication page for Andrew. It is so sweet but of course so sad, too. As I was waiting for Sarah after school two of Andrew’s friends came running up to me to show me his page in their books. I have said it many times – everyone at school was always so supportive of Andrew and gave him such a good experience while he was there. Now that he is gone they have done so much to honor and remember him and we are very appreciative.

The Regions Charity Classic – Senior Golf Tour Event will be played at Ross Bridge May 14-18. I wanted to mention their Birdies for Charity program. Kids vs. Cancer is a participating charity. It was started several years ago by our friends the Kaufman’s – their sons are accomplished junior golfers and have set up and participated in several events that raise money and awareness for pediatric cancer. All of the money they raise goes to the Children’s Hospital department of Hematology/Oncology. If you are interested in donating I included the link which will get you to the home page and then you just click on Birdies for Charity then Kids vs. Cancer and you will be directed from there.
www.regionscharityclassic.com


I also wanted to say a special thank you to Susan Morris and the Indian Princess Tribe that Bruce and Sarah are members of. Susan’s late husband Joe and their daughter Victoria are also members of the tribe. After Joe’s passing they put together the Joe Morris Memorial Golf Tournament. The money they raise this year will go to Children’s Hospital in memory of Andrew. We are honored that Andrew will be remembered along with Joe this year.

So…after all this talk about golf the new photo seemed very appropriate. Andrew taking a rip at one in our back yard – I think it was taken in the spring of 2004.

Thanks for checking on us.

-Anne

Friday, March 14, 2008 8:37 PM CDT

My grandmother passed away last Sunday – she was my mother’s mother and my children’s only great grandparent. She lived most of her life in DeFuniak Springs, Florida so on our many trips to the beach we would stop at her house for a visit. The photo of her and Andrew is probably from 2003. The kids loved to visit with her – she always had a good snack for them and they loved the big red ball she kept in her closet. Her health had declined in the past several months and she had been in the hospital and a skilled nursing facility. At the skilled nursing facility she was receiving rehab services and part of her rehab included playing UNO. She didn’t totally understand UNO and was not enjoying it. My mother reminded her that UNO was Andrew’s favorite game. I have a feeling that she is enjoying UNO more now…but she is probably not winning many games against the King.

Thanks for checking on us.

-Anne

Sunday, March 2, 2008 9:22 PM CST

Please keep the family of Haley Dotson in your prayers. Haley went to heaven on Friday. We are thankful for her life and that she is now healed. Haley was diagnosed in June of 2004, before her third birthday. She and Andrew went to radiation together everyday for six weeks and we would see Haley and her mom and dad on and off at the hospital over the years that followed. During this past year when both of our children would relapse for a second and final time, we were blessed to have their friendship. The link to Haley’s web page is below.

Thanks for checking on us. - Anne

Sunday, February 17, 2008 11:13 PM CST

In my last post I mentioned the Conquer Childhood Cancer Act. It was introduced before the House of Representatives and the Senate last March. Since that time it has gained many co-sponsors but still sits in committee with no further action taken. I am asking anyone who has not already done so to please consider sending a letter to their Senators and Representatives asking them to co-sponsor this Act. It is quick and easy to do this via e-mail and I have copied the information from Cure Search below. You can go to www.thomas.gov (HR 1553 House bill number and S-911Senate bill number) to see if your Senators/Reps have already co-sponsored. For those in Alabama – Senators Shelby and Sessions have not yet signed on so please contact them.

When I dropped the ball on this last year our good friend, Jim Lipski, picked it up and ran with it. The Lipski’s lost their son JJ to a brain tumor in 2007. Jim has continued to update everyone on the legislation on JJ’s web page as well as on the page they set up – www.icouldbeyourchild.org. Thank you Jim for keeping us all informed. Just for comparison sake I will post some of the information that Jim found. The following Senate Report 108-08 is from 2002… Senate Committee on Appropriations “remains strongly committed to improving research and prevention efforts in the area of prostate cancer and has included $4,770,519,000, an increase of $178,171,000 over the fiscal year 2003 appropriation, for cancer research programs at the National Institutes of Health. The Committee understands that of this amount, the National Cancer Institute plans to devote approximately $399,900,000 specifically for prostate cancer research.” The Senate allotted 4 Billion, 770 Million, 510 Thousand dollars in 2002 for one particular type of cancer (prostrate) and yet we are struggling to get this 150 million dollar bill passed in 2008 for all types of childhood cancer. I will echo Jim’s sentiments in that research for all types of cancer is a good thing…but why are our children so short changed in comparison?

Thanks for your help with this.

CureSearch Information:

I am pleased to inform you that the Conquer Childhood Cancer Act 2007 was introduced in the House of Representatives on March 15th and in the Senate on March 19th. Now, we need everyone to help increase awareness of this bill to fund childhood cancer research.

This landmark legislation authorizes $150 million over a five-year period to:
- expand support for biomedical research for pediatric cancer research;
- establish a real-time population-based childhood cancer registry, which enables researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments; and
- provide funding for informational and educational services to families coping with childhood cancer.

Please contact your Members of Congress and ask for their support of HR-1553 (House bill number) and S-911 (Senate bill number). You can generate the letter on-line:
1. Go to our home page on www.curesearch.org.
2. Click on "write a letter now".
3. Click on "Action Alert" at the top of the page (do this for both the House and Senate).
4. Follow prompts and then add your personal message and modify the content of this letter.

When you complete your communications, we encourage you to ask your friends, colleagues and business associates to join us in this effort. Please note the letter will change to a thank you if your member of Congress has signed on to support the bill.

Thank you,

Tricia Benson
Director of External Affairs
CureSearch National Childhood Cancer Foundation
240-235-2208

Tomorrow is Presidents Day and I just realized that it has been two years ago that we went on our Wish Trip to Disney – we planned it around the long weekend. We had such a wonderful trip and have so many great memories. Mostly I remember being surprised that Andrew wanted to ride and do EVERYTHING – he went on every roller coaster that he was tall enough to ride – many of them more than once. He was so excited to try the rock climbing wall and any ride that looked remotely scary he was up for. It was so great to see him so outgoing and confident - more like the child he had been before he was diagnosed. We had so hoped that this was just the start of better days to come. The photo is from the pool at Give Kids the World Village where we stayed.

Thanks for checking on us. - Anne

Sunday, February 10, 2008 10:02 PM CST

It has been a while since we updated and since it is Mercedes Marathon weekend here in Birmingham it seemed like a good time to do so. The photo is from the 2006 Kids Marathon. Andrew started logging his miles for the marathon just about the time he finished his last round of chemo in September of 2005. He completed the last mile on a very cold race day and was so proud of his accomplishment. All of these events/milestones, etc. are so bittersweet – we cherish the happy memories that we have but are so sad that he is no longer here with us. This year they dedicated the 3rd grade mile to Andrew – what a very thoughtful gesture. Our friend Scarlett Cowan started the 3rd grade race and did a wonderful job of remembering Andrew. Thank you, Scarlett. Sarah ran the marathon again this year and according to Bruce (and as evidenced by her strong finish) there was much more running and a lot less complaining than last year. Way to go Sarah!

The Indian Princess group that Bruce and Sarah are a part of put together a relay team in memory of Andrew. The money that they raised went to Children’s Hospital. Thanks to Al Ellison for heading that up and to Al, Stephen Christie, Jim Moss, Paul Sumner, Murray Meadows and Mike Perley for running. Thanks also to all of the Tonkawa’s for supporting this effort.

Thanks also to our friend Kathleen Lawrence for remembering Andrew today as she ran the Mercedes Marathon with a photo of Andrew on her back. Thanks, friend.

Last March I posted some information about the Conquer Childhood Cancer Act that was introduced before congress. Shortly thereafter Andrew relapsed and I pretty much dropped the ball on it. The Act has gained numerous co-sponsors but still sits in committee with no further action taken - I am gathering some information on this and will post it in a few days. Please check back in to see how you can help – it is quick and easy to send a letter via e-mail to your senators and representatives – your help in this matter would be greatly appreciated.

Thanks for checking on us.

Anne

Thursday, January 10, 2008 1:24 PM CST

Thanks to everyone for their prayers and concern as we faced our first birthday and Christmas without Andrew. It was difficult at times but we also had happy times with Sarah and family. More than anything it was just too quiet on Christmas morning – Sarah needed someone to make noise with. We did spend some time on Christmas with my brother and his family – 3 boys and there is never a shortage of noise, fun and excitement. Sarah fits right in with her cousins and they always have a great time.

The new photo is from the one and only time it snowed a measurable amount during Andrew’s life. I believe it was January or February of 2000 and as you can see Andrew was quite interested in the new phenomenon.

Please pray for our special friends Sebastian, Sean and Haley. Sebastian and Andrew were on stem cell at the same time and on good days enjoyed a little “hall soccer”. Sebastian’s brain tumor returned in October. Sean has relapsed a second time with leukemia and is preparing for a bone marrow transplant. Haley was receiving her radiation at the same time as Andrew in 2004 and has relapsed a second time with rhabdomyosarcoma. These families are very special to us as they have been so supportive in so many ways during our journey. You can see links to their sites below.

Thanks for checking on us. - Anne

Saturday, December 22, 2007 7:23 AM CST

Happy Birthday, Andrew

Love,
Mommy, Daddy and Sarah

Thursday, December 13, 2007 8:47 AM CST

Well there is really not much to update – mostly I just wanted to change the photo. This was our Christmas photo from 2001.

I also wanted to share some of the writings of Andrew and Sarah’s classmates. I think I mentioned earlier that our friends at East put together a book with notes from many of the children. These are the heartfelt words of Andrew and Sarah’s classmates – they range from K through 3rd grade. I hope it was helpful for the kids to write about Andrew’s passing – it has certainly been helpful for me read the notes.

Dear Long Family,
I hope this will help you.
Dear Jesus,
Please be with the Long family. As you know their son passed away last week. Please be with them. Amen
God be with you.
John 3:16


Dear Mr. and Mrs. Long,
I know Andrew is OK because he is now in heaven having a great time.
(This one had a picture of a sofa, TV and gamecube)


Dear Mr. and Mrs. Long,
I am sorry that Andrew died but he is safe with God now. I know that Andrew is happy where he is. I will pray for him.


Dear Mr. and Mrs. Long,
I have been feeling very sad for your son Andrew. I know yall loved him the day he was born. I hope he has the best time ever in heaven.


Dear Long family,
I feel sooooooooo bad that Andrew died. I loved Andrew. I’m really sorry. When I heard my heart broke in two.


Dear Mr. and Mrs. Long,
I’m so sorry that your son died. My best friend knows him so that’s how I know him and I feel so sad. I hope you know where he is and that he is in a safe place and God will take care of him and Sarah do not worry about that and you know that your mom and dad will take care of you.


Dear Mrs. Anne, Mr. Bruce and Sarah,
I’m so sorry about the loss of Andrew. I remember he always had a smile on his face. He was all ways wearing his fishing hat at the pool. He was a very, very, very good friend to me.


Dear Mr. and Mrs. Long,
Andrew is a great kid and friend. I’m sure he’s happy. He’s probably built a life size Eiffel Tower of Legos maybe bigger! My point is that he’s in God’s hands, he’s fine, he’s happy and joyful.


Andrew died a few days ago. We are all very sad. I know he is in heaven now, but it is still sad. Andrew had many friends that miss him very much. I know that he was very brave and smart. We all really miss him. So I will keep him in my prayers. I will pray for you too. I know that you will see him in heaven one day and I hope that will make you happy.


Dear Mrs. Mr. Long,
Dear God, please lead Andrew and help him. Andrew was a loyal friend and he cared for his friends and his family. He was funny. Andrew was a brave kid.
Poem:
The sky is gray the oceans are blue but heaven will welcome Andrew.


Dear Long Family,
What I remember about Andrew is that he was funny, caring, nice and playful. That is what I like about Andrew. I loved watching him laugh.


Dear Mr. and Mrs. Long,
Andrew was a good friend. Andrew was a joker. He liked jokes a lot. One day you will see him in heaven. I am very sad for your family. God be with us.
John 3:16

There are many more and they are all so sweet and special. Maybe I can add a few more next time. Thanks for checking on us. - Anne

Saturday, December 1, 2007 9:25 PM CST

Happy Birthday Sarah!! Sarah is 7 years old today – we celebrated her birthday yesterday with a party at Dick’s Sporting Goods. Sarah and her friends all got a shot (several shots if they wanted) at climbing the rock wall. She had a really nice time.

We had a nice Thanksgiving in Huntsville with Bruce’s family – they were very nice to allow Max to join us and he behaved pretty well.

Special thanks to “Andrew’s Army” – a group of 4 very special, dedicated people who are participating in the St. Jude marathon this weekend. They are Leslie Hutcherson (sister of my good friend, Lee Carol Meads), Chris Keller (works with Bruce), Sara Milton and Allison Ossorio. They have raised $3,985 for research in memory of Andrew – even though all of the fund raising efforts we have initiated or participated in have benefited our local Children’s Hospital we realize that critical research is taking place at many different facilities and progress that is made will benefit all children. Thank you again to Leslie, Chris, Sara and Allison for remembering Andrew – we are humbled by your efforts.

Thanks also to our dear friend and talented photographer, Sheila Goode. Sheila has put together a very touching slideshow on her web page – www.sheilagoode.com - then go to slideshows. Thank you, Sheila.

We are doing the best we can with all the “firsts” and special days that we have had and that are fast approaching. As we have said, it will never be the same…but it’s not supposed to be.

The current photo is one that Bruce selected. It was probably taken around Thanksgiving 2005 - we would usually celebrate both Andrew and Sarah's birthdays in Huntsville with Bruce's family the weekend of Thanksgiving.

Thanks for checking on us and for your prayers and words of encouragement. -Anne

Sunday, November 18, 2007 9:33 PM CST

All things considered we are doing pretty well. We are getting used to the puppy – he really is doing well and Sarah loves him. When he gets wild he can be a hand full but she is handling him pretty well. Bruce added new photo of him and Sarah in the gallery.

A group of Bruce’s golf buddies took him out of town this weekend for a golf outing – other than his game being quite rusty and his poker skills being mediocre he had a nice time. Thanks to the golf guys for organizing the trip.

The current photo is one of my favorites – Andrew before an upward soccer game – September of 2003. No words necessary.

Thanks for checking on us. -Anne

Thursday, November 8, 2007 9:34 PM CST

Thanks again to everyone who supported the Knockin’ Cancer Out of the Ballpark event. It looks like the grand total will be around $20,000!! It is our hope and prayer that the money raised will improve the lives of brain tumor patients.

The big news at our house is the addition of a puppy to the family. I am trying to keep his status somewhere below that of the humans in the house – we’ll see how that goes. Sarah has wanted a puppy for so long and she has been patient in waiting but she had waited long enough. It just didn’t seem feasible during Andrew’s illness and I could have put it off even longer but as I said Sarah had waited long enough. He is a cute, cream colored mini labradoodle. Sarah named him Max. He is doing pretty well with his crate training but we will have to work on the biting and getting him to behave on the leash. Sarah loves him – the second day we had him she said “he is just like he was yesterday …but cuter!” Bruce added a photo of him in the gallery.

I had mentioned sharing some of our favorite photos of Andrew before he was diagnosed – the last one was my choice so the one up now is Bruce’s choice.

We are ok, but we just miss Andrew so much. The softball game didn’t feel right without him, and trick or treating wasn’t the same because he loved Halloween so much. We have Thanksgiving, Sarah’s birthday, Andrew’s birthday, and Christmas coming up…just more first time events without Andrew and they aren’t getting any easier.

Thanks for checking on us. - Anne

Tuesday, October 30, 2007 10:32 PM CDT

Thanks to everyone who came out to the 3rd Knockin’ Cancer Out of the Ballpark on Saturday! Thanks also to those who contributed but were not able to be with us on Saturday. We are so appreciative of the support. We don’t have an official total yet but our attitude has always been that whatever money is raised is money that was not available before. We know it will be put to good use in trying to improve the lives of children with brain tumors. Special thanks to Samford, UAH and UAB for giving us this opportunity and to all of our sponsors and everyone who worked so hard to put it all together.

The weather was perfect and it was great to visit with friends and family. Sarah was very proud of her “first pitch” and had a wonderful time playing in the fun zone. Andrew loved this event and everything about it – it was hard without him there – not much else to say. Bruce will post some pictures from the event – when he gets a minute. You can see the Fox 6 story at:

http://www.myfoxal.com/myfox/pages/News/Detail?contentId=4759890&version=1&locale=EN-US&layoutCode=VSTY&pageId=3.1.1


Also, t-shirts for the event went quickly – several people have inquired about getting one. SuSu Davis has generously agreed to print some more. They are $5 – proceeds going to the UAB Pediatric Neuro-oncology program at Children’s Hospital. If you would like one please e-mail me your order – longbhm@earthlink.net

As always, thanks for checking on us. - Anne

Thursday, October 25, 2007 8:01 AM CDT

Directions/Parking: Enter the main campus entrance – take the first left onto Montague Dr.- continue around past the football field on the left, turn left at the next stop sign (past the football field) – Dawson Dr.- this will take you in front of the old basketball arena, turn left at the next stop and go past the new basketball arena, turn left at the next stop sign, you will be able to see the softball field at this point, there are two small parking lots to the left of the field and a deck on the right – you may park anywhere in this area. It is possible that this area may become full – there is extra parking below the south end of the football field but you will need to go the end of this lot and walk approximately 100 yards up a construction road.

We hope to see you there! More details below.

The 3rd Annual “Knockin’ Cancer Out of the Ballpark” is fast approaching – it will be held on Saturday, October 27th on the campus of Samford University. We appreciate your past support and we hope that you will once again consider attending. All proceeds will directly benefit the UAB Neuro-Oncology Research Program at Children’s Hospital.

This year’s event will provide entertainment for the whole family. We will have plenty of softball, as well as games and activities for children including moon walks and lots of great prizes. Special thanks to Lucy’s on Thirty-one for donating some wonderful prizes that the kids will love! We will also have special visitors from Hand-In-Paw, clowns and face painting. The Fun Zone will be open from 10 am until 2:30 pm. The softball games will follow the ceremonial first pitch which will feature neuron-oncology patients and siblings. All other kids who would like to participate are encouraged to run onto the field with players as they are introduced.

The game schedule is as follows:

11am – Samford vs. UAH
12:15 – UAH vs. UAB
1:30 – Samford vs. UAB

Donations will be collected at the gate – all donations are tax-deductible. If you cannot attend but would like to make a donation – checks can be made out to: Children’s Hospital with softball benefit on the “For” line.

Checks can be mailed to:
Children’s Hospital Foundation
ATTN: KCOOTB
1600 7th Avenue South
Birmingham, AL 35233

If you have any questions please feel free to e-mail me at home.

As always, thanks for checking on us. - Anne

Wednesday, October 17, 2007 9:53 PM CDT

Dear Family and Friends:

The 3rd Annual “Knockin’ Cancer Out of the Ballpark” is fast approaching – it will be held on Saturday, October 27th on the campus of Samford University. We appreciate your past support and we hope that you will once again consider attending. All proceeds will directly benefit the UAB Neuro-Oncology Research Program at Children’s Hospital.

This year’s event will provide entertainment for the whole family. We will have plenty of softball, as well as games and activities for children including moon walks and lots of great prizes. Special thanks to Lucy’s on Thirty-one for donating some wonderful prizes that the kids will love! We will also have special visitors from Hand-In-Paw, clowns and face painting. The Fun Zone will be open from 10 am until 2:30 pm. The softball games will follow the ceremonial first pitch which will feature neuron-oncology patients and siblings. All other kids who would like to participate are encouraged to run onto the field with players as they are introduced.

The game schedule is as follows:

11am – Samford vs. UAH
12:15 – UAH vs. UAB
1:30 – Samford vs. UAB

Donations will be collected at the gate – all donations are tax-deductible. If you cannot attend but would like to make a donation – checks can be made out to: Children’s Hospital with softball benefit on the “For” line.

Checks can be mailed to:
Children’s Hospital Foundation
ATTN: KCOOTB
1600 7th Avenue South
Birmingham, AL 35233

If you have any questions please feel free to e-mail me at home.

As always, thanks for checking on us. - Anne

Tuesday, October 9, 2007 7:37 PM CDT

The inaugural Ted’s Tasting for a Cure was a big success – we enjoyed being there and visiting with family and friends. The food was wonderful – if you have never been try them out sometime. Special thanks to Heath and Dedra Wade, Tasos and Beba Touloupis and Chef Vasilios Tsantes they all did such a wonderful job.

As I mentioned in the last update the 3rd Knockin’ Cancer Out of the Ballpark is fast approaching. It is scheduled for Saturday, October 27th – fun zone will open at 10 and the first pitch will be at 11. The event should run until about 2 – Samford, UAH and UAB will play 3 – 3 inning games. As usual, there will be plenty of family fun in the fun zone with moon walks, games, clowns, face painting, Hand-in-Paw dogs and more. We hope to see you there.

We received a special gift last week from our family at East. They put together a book with notes and memories about Andrew from the faculty, staff and students. It is indescribable and we will treasure it always. I have told many people that other than the beach, Andrew was happiest when he was at school. Being around the other kids helped him so much to feel normal and just like a kid. We will never forget the kindness that was shown to him by all of the wonderful kids at East and how hard all of the teachers and staff worked to give him such a “normal” experience.

Well, as you can see we added a new photo – I wanted to share some of my favorites of Andrew from his first 5 ½ years before he was diagnosed. We did not have a digital camera until around the time he was diagnosed so these photos were harder to access and share. A friend recently scanned some of them in for us so now we have them on disc. I (Bruce) will change them out periodically and share some other favorites. The one that is up now was probably taken a month or two before Andrew’s second birthday. Bruce was taking some photos for some friends of ours and Andrew was assisting/playing keep away with the equipment – I’m not sure if Bruce ever got the flash back!

Bruce and I are still doing OK. I think Sarah is doing well – she is working on a scrapbook with some of her favorite photos of Andrew and the two of them together. She has also continued to write in her journal. As usual she is enjoying school.

Thanks for continuing to check on us. - Anne

Wednesday, October 3, 2007 9:17 AM CDT

Hi Friends,

I wanted to pass along some information about an upcoming event that will benefit pediatric cancer research at Children’s Hospital. As you can see, Bruce has added the flyer with much of the information included on it. Heath Wade (Pit Master) and his wife Dedra (teacher at East) are in our Sunday school class and have always been so kind and supportive. As Heath and the folks at Ted’s Restaurant were working out the details of the new catering business they knew they were going to have an open house/tasting and wanted to have a charitable component to it. Heath so generously approached me and Bruce asked what they could do to help with Andrew’s situation. Our standard answer is “money for research” and we also like to be supportive of our local Children’s Hospital – it is wonderful facility and asset to our community and we all really never know when we may need it. Thanks so much to Heath and everyone at Ted’s. I will include a few more details not listed above. There will also be a live band and family entertainment. Ted’s is located at: 328 12th Street S. You can pick up tickets at Ted’s or at Ted’s To Go: 1801 4th Ave. S. Tickets will be available at the door – if you go this route please let them know you are coming. You can do this by phone (324-2911) or e-mail: tedstasting@chsys.com

I also wanted to say thanks to Leslie Hutcherson, she is the sister of our good friend, Lee Carol Meads (also a teacher at East). Leslie is running the St. Jude marathon in memory of Andrew. Leslie used to live in Memphis and has run the marathon before. She has since moved but is going back for the run. Thanks to Leslie for honoring Andrew in this way.

Finally, many of you have already received letters regarding the 3rd Annual Knockin’ Cancer Out of the Ballpark event benefiting the UAB Pediatric Neuro-Oncology Program at Children’s Hospital. I just wanted to give a “save the date” reminder if you did not receive a letter – the event will be held on Saturday, October 27th starting at 10AM and probably lasting until about 2. Thanks to everyone who has generously supported this event in the past – we hope to see you again this year.

As for us, we are still “ok”. Sometimes it doesn’t feel real and we expect to find him on the couch and other times it feels like he has been gone for longer than he really has. We miss him really bad but know he is better off.

Thanks again to everyone for their continued prayers and encouraging messages.

Anne

Wednesday, September 26, 2007 10:34 PM CDT

It is hard to know where to start but thank you seems like a good place. So, thank you to everyone who able to attend the visitation and/or service for Andrew and for those who were not able we know you were with us in spirit. We felt it was a fitting tribute to his wonderful life. For those of you who were not there, somehow Bruce had the courage to get up and speak. He thanked all of our medical staff along with all of those who prayed for us, encouraged us, fed us and have done so many different things to help during the past three years. As he pointed out these people ranged from our family, to our church family, to close friends, to people we barely knew and even people we didn’t know at all. He also shared a few Andrew stories and thoughts about how Andrew lived his life. Thank you so much to Bruce for sharing – you are the best dad Andrew ever could have had!

With the difficulty of the past few weeks I have not had a chance to say “thank you” to all of the people who made my wonderful birthday gift a reality. As stated above, every need we possibly could have had has been taken care of during the past three years but for so many people to contribute to something that was not a necessity but something that I will always treasure is overwhelming and humbling. Thanks to you all.

Sarah returned to school today and I think that was good for her. She seemed to enjoy the day – just like any other day at school. She has had some emotional ups and downs as I’m sure we all will. Two different friends gave her journals to write in and she has really taken to it. She has written some really sweet things about Andrew and things that they each enjoyed doing – hopefully this will help her. Snowman stayed with us and Monday night after the service she said that Snowman helped her feel better. He helps me feel better too.

I know this has been difficult for everyone – especially the kids who knew Andrew. It’s just not something any child should ever have to face from either perspective. Whatever the phases of grief are I know we’ve got several going on. Andrew’s standard answer to any doctor/nurse that asked him how he was doing was “I’m fine”, even if he had just been sick two minutes before…I don’t think we’re ready to say that yet so we’ll go with “just ok”.

Thank you again to everyone for keeping us in your prayers. -Anne

Friday, September 21, 2007 8:01 PM CDT

Visitation: Sunday 5-7 pm at Vestavia Hills United Methodist Church
2061 Kentucky Ave
Birmingham, AL 35216

Funeral Service: Monday 1 pm at Vestavia Hills United Methodist Church
Burial following at Ridout's Southern Heritage
475 Cahaba Valley Road
Pelham, AL 35124

Memorial donations to benefit brain tumor research can be made to:
Children’s Hospital
c/o Andrew’s Team
1600 7th Avenue South
Birmingham, AL 35233

“Blessed is the man who perseveres under trial, for when he has stood the test, he will receive the crown of life that God has promised to those who love him” James 1:12

Andrew went to be with the Lord last night. Our lives will never be the same. We thank God for his life and for every day in it. We thank God that Andrew is healed, that he is whole and that he has been restored.

We thank all of the people who have carried us through this journey.

With love and appreciation,

Anne, Bruce and Sarah

Friday, September 21, 2007 8:29 AM CDT

“Blessed is the man who perseveres under trial, for when he has stood the test, he will receive the crown of life that God has promised to those who love him” James 1:12

Andrew went to be with the Lord last night. Our lives will never be the same. We thank God for his life and for every day in it. We thank God that Andrew is healed, that he is whole and that he has been restored.

We thank all of the people who have carried us through this journey.

With love and appreciation,

Anne, Bruce and Sarah


Tentative Plans are for Sunday evening visitation and Monday 1 pm funeral. We will update here when plans are confirmed.

Monday, September 17, 2007 11:02 PM CDT

Wed. Update: We are Home.

Tues. Update: We've decided to stay another day at the hospital to make sure he is stable and we have all his meds lined up and feel confident about coming home.

Today has been a very quiet day. Andrew has been very stable and his breathing is much improved. He has had his eyes open more today and has given us a few very weak yes answers and even had a few bites of ice cream. The doctors and nurses have all been very understanding of our situation and are willing to do whatever we want as far as staying or going home. Right now we are thinking that if Andrew is still ok tomorrow and we can get transport home arranged tomorrow then we will come home. We think we've got everything we need to keep him comfortable at home and we know that's where he wants to be.

Thanks to everybody checking on us.

- Bruce

Sunday, September 16, 2007 6:16 PM CDT

Andrew's condition has gradually declined since the last update and last night he had a very extended seizure and we didn't have the necessary equipment and drugs to make him comfortable at home so we had to call for the ambulance. Andrew is currently in a room on 4Tower and is resting comfortably now. We may get to a point where we can come home again but we just don't know at this time. We do know that we don't want him to suffer anymore and he has fought long enough.

Bruce & Anne

Thursday, September 13, 2007 3:09 PM CDT

Andrew has had a few better days since Saturday…I don’t want to overstate the improvement - it is all relative to our current situation. However, it is great to hear him talk and smile at you. He has talked a little more and has been eating a little better – mashed potato, soup, ice cream and even a cookie. We had a bit of a rough night last night – he was very restless and could not sleep – at one point he did say his head hurt. After some morphine I think we finally all fell asleep around 4am – he has been sleeping pretty much all day. They way things seem to go you never know how the next day will be. Hopefully he will have another good day.

We don’t think he has had any seizures in a few days and last night was the first time in days that he has needed any pain medicine. We have changed a few of his medicines over to IV so that it will be easier to get them in and we can be more consistent with them.

Thanks to everyone who was able to attend the Rally lunch at Outback. We understand that it was very nice and we really appreciate everyone making the effort. The riders along with Claire and Nicole stopped by the house for a visit. Andrew was in his wheelchair in the den and awake but he was not up for talking right then. Sarah was up for talking and she really enjoyed the visit and the goodies bags that they brought. It was great to meet them.

I don’t think we can ever thank everyone for all that they have done for us but please know how much we appreciate the prayers, cards, meals and kind words. I did want to take a minute to say thank you to members of the Mayfair Church of Christ in Huntsville who have so kindly and consistently send cards to Andrew – he really appreciates them and the $ for his piggy bank always brings a smile – thanks.

-Anne

Saturday, September 8, 2007 7:18 PM CDT

Well, there has not been much change since Wednesday. Andrew is staying in bed except for one short trip to the den on Thursday. He sleeps on and off and really doesn’t say anything unless you ask him a question - he will usually give you a brief answer. He is not eating much – just a few bites of soup yesterday and sips of water. We are adjusting his seizure medicine to try and decrease the seizure activity and I do think it was a little better yesterday. His pain is still minimal unless you try to move him. We did give him a sponge bath and washed his hair – it is a little hard to do this without causing some discomfort but it does make him feel better.

Sarah continues to enjoy school and had her first soccer game last night. We think she is doing well, all things considered but as we have said, she doesn’t remember life before Andrew was diagnosed.

I also wanted to pass along some information about a fundraising lunch that will take place at the Outback on Hwy 280 – Monday (10th) from 11:30 to 1:00. It is benefiting the Rally Foundation which is based in Atlanta (www.rallyfoundation.org) – all of the money they raise goes to support pediatric cancer research so it will benefit all children with all types of cancer. During our journey, we have gotten to know some of the people who started the Rally Foundation – they are wonderful people who have been very supportive and encouraging. They sponsor a variety of fundraisers – this one in particular is the Rally Across America – I have attached some information below. They will be riding through Birmingham in honor Andrew – thanks to Rally and the riders! My understanding is that there is not a set price for lunch – they will be taking donations. So, if you work in the 280 area or have time on Monday, it will be a good lunch for a great cause.

Rally Across America 2007 is a 600-mile bike ride to raise money for childhood cancer research on behalf of Rally Foundation. Founders Austin Bauman and Tom Reardon are joining new riders and riding a new route through 5 Southeastern cities: Memphis, Birmingham, Atlanta, Chattanooga, and Nashville. In each city the team will visit a local children’s hospital, and hold a fundraiser in honor of a local child fighting cancer. The event is being held in September to celebrate National Childhood Cancer Awareness Month.

Thanks for checking on Andrew and for continued prayers. -Anne

Friday, August 31, 2007 11:26 AM CDT

Since our update on Tuesday Andrew has felt a little better - he had good days on Wednesday and Thursday. His short term memory is still not very good but he was awake much more, ate better and was generally in a good mood. I had a very nice birthday yesterday – Andrew sang happy birthday to me, blew out my candles (3) and had a pretty big piece of cake – what a blessing. Thanks to everyone who sent birthday wishes, cards, cake, cookies, cupcakes, etc – it was all appreciated and made the day very special. Andrew slept well last night and is now on the couch enjoying some soup and watching a movie.

Thanks again to everyone for checking on us and for continued prayers.
-Anne

Late Sat. Update: Andrew has felt bad all day. He has stayed in bed all day and has been sick quite a bit and hasn't been able to keep anything down.

Late Sun. Update: Andrew had some seizures this morning and since then he has probably only said about 4 words total and has been in and out of sleep all day. He opens his eyes alot but doesn't seem to really be focusing on anything. He did this about 2 weeks ago and somehow came out of it but we just don't think he can keep bouncing back.

Late Mon. Update: Andrew was a little better today...he spoke some and was more alert. Still stayed in bed all day and slept alot but better than day before.

Late Wed. Update: Andrew is about the same...he's awake a fair amount and will answer questions but has still had some seizures today. He hasn't made it out of the bed in several days but did get a sponge bath today.

Tuesday, August 28, 2007 11:12 PM CDT

Thursday: Happy Birthday Anne!!!

Since our last update on Friday, Andrew has gradually been feeling worse again. He is sleeping a great deal and when awake he doesn’t want to eat or drink much although he did do better today. We are still trying to give him all his normal meds plus the supplements but it has been very hard maintaining any type of schedule with him sleeping so much and not wanting to make him mad by shoving pills at him as soon as he opens his eyes. He only complains of pain when we move him and he hasn’t had any pain meds in over a week. His hands had been getting pretty shaky and I think you would have to call them tremors at this point because it is happening even when he is not actively doing something and that might be one reason why he hasn’t even asked about playing video games. Although he did stay awake a fair amount today and did eat and drink a decent amount, his voice is very weak and he sometimes can’t say the word he wants to say and sometimes he has some confusion about where he is. Lately, you have to really work to get a laugh out of him and everyone that knows Andrew knows there is nothing he likes more than laughing or making someone laugh so we know he’s really not feeling like himself.

We’ll try to update a little more often because we know there are a lot of people checking and wondering what is going on. We thank all of you for your prayers and all those who have been leaving messages, sending cards, leaving candles, providing meals, doing yardwork, giving trophies, playing with Sarah, running errands, and I'm sure I've left a bunch of things off but we appreciate everything so much.

Still believing miracles can happen,
Bruce and Anne

Thursday, August 23, 2007 1:12 AM CDT

Friday 1 am update: Andrew has continued to feel better now that he has been getting fluids regularly and felt good enough that he "demanded" to be taken to the couch as you can tell from the photo above. Our friends at Hoover Country Club made Andrew the Honorary Club Champion this past weekend. Everybody signed a flag and they had hats made with his name on them and I think the smile you see in the picture says thanks to everyone involved. I also put a couple of other pictures on the gallery page.

Thursday 1 am update: Well, I suppose that all in all things are a little worse than when we updated on Sunday. Andrew had a pretty bad day on Monday – he was very sleepy and not very responsive. If you got right in his face and talked loudly to him he might give a short answer. He was continuing to have head pain but that was controlled pretty quickly with the morphine. It can be difficult to tell if the groggy state is from the disease or from the medicine. He was also throwing up some and we felt he was getting dehydrated. We did get some fluids for him but he has not felt like sitting in the den and watching TV, etc. After a rough Monday he seemed better on Tuesday and Wednesday. He still did not get up but he has not vomited or complained of head pain (or had any medicine for pain) since Monday. He still sleeps a good bit but when he is awake he is much more responsive and even ate a little cereal and soup each day – or night as the case may be. I am updating at this late hour as he just finished a bowl of Apple Jacks and Bruce is reading him a book.

Again, we are touched by the prayers and encouragement of so many. We continue to try to find joy in each day – some days you have to look harder than others. Andrew has not given up and neither have we. We ask that you continue to pray for us all.
-Anne

Sunday, August 19, 2007 6:40 PM CDT

The week has had its ups and downs – Andrew still has times when he feels OK – but he seems to be sleeping more and his headaches, at times, have increased to the point where he needs more pain relief than Tylenol or Motrin can provide. We had mentioned in our last update that we wanted to be able to properly take care of Andrew at home, so earlier this week Bruce and I made the decision to employ the services of hospice. It is not a decision that any parent would want to be faced with…that being said, we know that they will be able to provide us with the support and assistance necessary to best take care of Andrew at home. We now have more options for pain control – which he has needed from time to time. During the times that he is awake and feeling OK he has still enjoyed playing GameCube a little and watching TV, but he is sleeping much more in the past couple of days and complaining of head pain more and more when awake. The morphine helps the pain but eventually puts him to sleep, so the number of hours we have with him awake just keep getting less.

We mentioned that Andrew was placed in a class at school. His teacher is Mrs. Hopton-Jones – she is very sweet and has always taken time to check on Andrew and leave messages in the guestbook. One day last week she was able to stop by after school for a short visit. Andrew was very happy that she was coming – they visited a little and then he gave her a proper “Andrew welcome” by beating her in UNO! Sarah had a great first week of school. Her teacher is Mrs. Cook – yes, the same wonderful teacher that Andrew had last year. She has several friends that she already knows in her class and seems very excited about school.

Andrew also received a special gift this week. It is tradition in our church for all of the third graders to be presented with their own Bible. Andrew would have been in the third grade this year (if none of this had ever happened) and many of his friends will be receiving their Bibles next Sunday. It was arranged for Andrew to receive his this week. Two of our pastors came to the house to present him with it and prayed with us. He was very proud of it and it was a special time for our family. Thanks to those who made it happen.

Thank you to all who are lifting our family in prayer and for all of the encouraging messages in the guestbook.
- Anne

Tuesday, August 14, 2007 1:17 PM CDT

Sorry it’s been a week since our last update. We still don’t know what to say, Andrew has his good moments and some that make us worry (ok, worry more than normal). Overall, he has sort of leveled out and we are on a schedule of “no schedule”. Andrew may decide to take a nap at any time or he may decide to get up and eat Apple Jacks at midnight and watch a video. We had my family here for the end of last week and into the weekend so there was no shortage of food and new movies. In between his naps he was very happy to have more people to wait on him hand and foot. Andrew still has to be carried from bed to wheelchair to couch and we’re not forcing him to try to walk anymore because it just seems too painful for him to try. Andrew has been getting his labs checked at home and had to get fluids twice last week because one of his kidney numbers was a little high. We did go to Children’s yesterday to get the remaining piece of tube from his shunt removed from his stomach. That should close up and heal in another couple of weeks and it would be great to have one less problem. The steroids really have him eating and his weight was up to 65 lbs. and he said he was “going for 70”. He has been having some more head pain recently and so far Tylenol has helped. As we have said before, the last thing we want is for Andrew to be in pain or to suffer so we are exploring our options for being able to properly care for him at home. He has made pretty clear his wish not to go back to the hospital. We are on hold for any traditional chemo but we are going to start some supplements that are showing promise in cancer therapy.

Yesterday was also the first day of school and we couldn’t be more proud of Sarah going into first grade. She was so excited and had a great first day and she is just so “normal”. She has handled all of Andrew’s problems and all the resulting attention on him beautifully and she loves him so much. At the same time we are sad because Andrew is unable to go to school. If he had never had cancer he would have been going into third grade but the first relapse caused him to repeat first grade so he would be in second grade this year. He has been put in a class and his teacher, like last year, has volunteered to come to the house to visit him. Everyone at his school has been so great through all of this.

Thanks to everyone checking on us…we wish we had time during the day to answer all the calls and e-mails but there are just not enough hours. Most of all, thanks for all the prayers for Andrew.

Bruce

Tuesday, August 7, 2007 12:59 AM CDT

Well, it has been a few days since we have updated. As much as anything, I don't think Bruce or I really know what to write. Andrew is doing OK but there are little things each day that lead us to believe that the disease is progressing. He really can't move around much without a great deal of help from one of us. He is sleeping more; however, when he is awake he is still very much the Andrew that we know and love. This is truly a blessing and we are trying to enjoy every minute despite the circumstances. There have been lots of "I love yous" around the house...not that that is anything new. Andrew has never been stingy with his love and affection. Sometimes he holds his arms out like he wants you to help him reposition and when you kneel down he says he just wanted a hug. So often, out of the blue he will tell one of us how much he loves us. I've told him that I love him so much that sometimes he has to remind me "you just told me that".

Today is the one year anniversary since Andrew was discharged from stem cell - we had so hoped that we would be enjoying a more normal life at this point. A stem cell transplant is so much to go through and although we were told that the chances of it resulting in a long term cure were slim, we had certainly hoped to get more time out of it. Andrew was "disease free" for about 6 months but felt poorly for 5 of those due to effects of the transplant. If we had know what the outcome would be I'm sure we would have chosen a different path...but of course none of us have the advantage of knowing what the outcome of our lives will be so we make the best decisions we can at the time and try not to look back. I said a long time ago that I felt Andrew could survive any treatment that the medical community could think up...I just wasn't sure any of them would actually cure his cancer. Andrew has certainly done his part and I know that all of the doctors, researchers and nurses are doing their best...maybe someday they can come up with something better.

As always, thanks for checking on Andrew. -Anne

Thursday, August 2, 2007 8:43 PM CDT

UPDATE: Friday 5:30 pm, We are HOME! It took all day to get here but we're here and Andrew is looking forward to no "beeping".

Well, it looks like we will be going home tomorrow. Andrew has had two pretty good days - he has slept a little more but when he has been awake he has felt good and been in good spirits. The news of going home tomorrow has certainly given him a lift. He did have an MRI of his brain yesterday - it looks like the procedure that was done when the shunt was removed is working well to prevent the pressure from building up in his brain again. The neurosurgeons are pleased with him from their standpoint. Dr. Reddy said that his cerebellum looks the same as it did two weeks ago. As we mentioned previously, the only reason that Dr. Reddy can pinpoint as the cause of the pressure build up is that his cerebellum is enlarged. Even though there is not a mass or enhancement that shows up on the MRI, the only logical explanation for the enlargement would be that the cerebellum has been infiltrated by medulloblastoma cells. This would also explain his poor balance and shaky hands, etc. Before this latest setback we had mentioned some potential treatment options that might stabilize the disease - we would still like to try one of these but we are "on hold" until Andrew recovers a little more and his kidney numbers are better - some of the antibiotics used to treat the infection caused by the perforated colon are hard on the kidneys. Andrew will be able to finish his IV antibiotics at home thanks to home health and the rest of the medicine he can take by mouth. They have turned off his fluids when he is not getting medicine so he is trying to increase his drinking and continues to eat well.

We had a few special visitors and activities to brighten up the day yesterday. Two Auburn cheerleaders stopped by to "cheer him up." I asked him if he knew who they were - he identified the girl as a cheerleader but guessed that the guy was a football player - he was a pretty big guy. Thanks Julie for setting that up - it was a nice treat. Our dear friends from Children's, the Fredella's, arranged for a magician to come to the hospital and entertain Andrew and some of the other kids. He performed for about an hour and all the kids really enjoyed it. Thanks to the Fredella's! Tonight, our church (Vestavia Methodist) sponsored their monthly dinner and game night at Children's Harbor - our family really enjoyed it. Sarah made several crafts and won a few prizes playing bingo. Andrew enjoyed playing bingo and won the grand prize which was a really nice stuffed dog. To top it all off the dinner was delicious. We are so appreciative of all the people who have supported us in so many different ways over the past three years.

As always, thanks for checking on Andrew. -Anne

Tuesday, July 31, 2007 11:13 PM CDT

Well it's Tuesday night and we've had a bit of an up and down day. The doctors removed one of the lines in his stomach this morning and changed the bandage. They all feel good about how it is draining and healing and said they would remove the other tube tomorrow. Shortly after that we got him up to do a little bit of walking and he was very unsteady and only took a few steps before he couldn't go any further and was shaking a lot. He was responsive the whole time and we got him sitting and monitors hooked back up and all numbers were normal. We were afraid it was a seizure and the start of something horrible like two weeks ago. Andrew answered all questions and said he just wanted to rest. He slept for about an hour while Anne and I worried ourselves sick, the nurses didn't know what to think and we asked them to page Dr. Reddy. Then some of the infectious disease doctors came by to check on him to try to figure out what antibiotics would be best to give him to rid him of the infection without damaging his kidneys. Andrew wakes up and goes into joke telling mode and entertained all of them and about that time Dr. Reddy showed up and sees him acting great. We gave her the story and she gave him a brief examine and said he looked ok and she didn't know what to call what happened earlier. Since then he has pretty much acted the same as the day before although we have not gotten him out of bed either. When the neurosurgeon came by he couldn't say if what he had was seizure or not…overall he thought Andrew was doing very well. We had already discussed with Dr. Reddy about getting an MRI before we leave hospital to see if his brain looks any different since all of the procedures were done to relieve the pressure and now we'd really like to get this done. I think what causes the most anxiety for us is that nobody can give black and white answers with Andrew...he has problems caused by original surgery, he has late effects from radiation, he’s had so much chemo in 3 years, he's recovering from a brain injury, he has an infection in his body, he's recovering from several surgeries, and he has disease in his body. So whenever he has a problem, how do you know what the cause of it is…there just isn’t much of a population to compare him to. We just pray what we saw today can be attributed to recovery issues and not disease or pressure build up.

Thanks for checking on Andrew,
Bruce

Sunday, July 29, 2007 10:06 PM CDT

We are still in our room and will be for several more days. His head is healing well and the internal procedure they did appears to be working properly. The procedure on his colon is what will keep us here to probably at least Thursday…the surgeons say they will probably remove the drain there on Wednesday and want to monitor it for a day afterwards. The surgeon who did the procedure is one of the more senior members of the staff and well respected and very reassuring when he speaks to you but I keep forgetting to ask him if he has ever done this before because judging by the look on everybody else’s face when they see it they obviously haven’t seen it before. We’ll just have to trust that this will all work out and we’ll get home this week. Andrew is eating better and has been able to get out with his walker in the hallway and exercise a little…we couldn’t ask for his attitude to be any better…whenever someone asks him how he feels he says ”I’m fine.” He could mention the 2 spots on his head with stitches, the drain coming out of his stomach, he can’t walk without help, his hearing isn’t good, his vision isn’t right or the fact he still has cancer but he doesn’t complain about any of that and just says he’s “fine”.

Being in a room has been really nice, Anne and I were living like homeless people for about 3 days so that one of us was always at the hospital and we’d be there for all visiting hours. I was operating on very little sleep thanks to Vault drink and Anne slept in the van in the parking deck at one point. We were not alone in doing this; the hospital has many families doing the same thing for longer periods than us. We are thankful for a relatively short stay in ICU and for the fact we live locally and can be supported by our family and friends and we just wish Children’s could find a way to provide more housing for the families of these children with long-term hospital stays.

Andrew has had a number of visitors over the weekend, number one of which was Sarah. We’ve generally let others keep her occupied during our hospital stays but this weekend she has spent (and is still here) most of the weekend here. I kind of wanted her to see that being in the hospital is not fun and understand what Andrew goes thru. I’m not sure it worked…she got in bed with Andrew and watched movies, played Gamecube, ate snacks, walked to McDonalds, and buddied up with Andrew’s nurse and she brought her chocolate milk whenever she wanted it… if you’re not sick the hospital isn’t so bad.

Thank you to everyone checking on us and leaving us messages (and jokes ), we read them all and are encouraged by them.

Bruce, Anne, Andrew, and Sarah

Friday, July 27, 2007 3:19 PM CDT

UPDATE: Andrew did get to a "real" room (678) last night at about 10 pm. He was very, very happy about that.

Andrew has continued to improve and has been in a pretty good mood today. We had a bit of scare last night when he began to have some drainage from his abdomen. I won’t go into all the details but Bruce and I were a little confused as to what the surgeon had done and what exactly was supposed to be draining. Our nurse didn’t like the look of it either and was willing to page just about everyone in the hospital to get an answer and be sure that it was OK. After several people looked at it and communicated with the surgeon we got a detailed explanation of the procedure (which we still don’t totally understand) and were assured that it was draining properly.

Andrew was told that he could add some noodles to his soup – he was so excited. Unfortunately he was probably too excited and ate a bit too much too quickly and got sick. We are trying to progress his diet a little more slowly now. The neurosurgeons saw him this AM and felt that he was doing well enough to remove the drain from the ventricle in his head and that he could go to a room. He was very excited about this news and the reward of going to a room was enough to offset the apprehension about the little procedure to remove the drain. He was able to have this done at the bedside and it only took a few minutes – he was able to grin and bear it. So, we are currently waiting on a room to open up – it is quite crowded here at CH – never a good thing. We will be going back 6 NW where we were last week – the rooms are large and very nice so we are all looking forward to it.
Thanks to everyone for all of the messages, prayers and concern. Please pray the procedure to relieve pressure in Andrew’s brain continues to work and that he does not have to go back to a shunt; that everything regarding his abdomen is working properly and that the infection clears and that his cancer will “take a break” while we are dealing with all of these other issues.

As always, thanks for checking on Andrew. -Anne

Wednesday, July 25, 2007 11:44 PM CDT

UPDATE Thursday 3:15 pm: Andrew continues to improve. He was cleared for a liquid diet this morning...not exactly what he had in mind but better than nothing. He got moved from PICU to Special Care this afternoon. We've never been in Special Care before which is just right across the hall from PICU and everyone was talking it up big and Andrew said that sounded good. We get wheeled over there and you can't fool him...it looks about the same as ICU and when we told him we'd have to leave for a couple of hours he said "this is the same place...I want a real room". The visiting hours are a little better than ICU and he has found a new audience for his jokes...the jokes aren't changing but the people are. Hopefully we will get moved to a "real" room soon.

Andrew has survived yet another surgery and when we first saw him he summed it up by saying “This is the worst thing that has ever happened to me.” The story we are getting is that a mistake was made in the placement of the end of the shunt which caused it to puncture his colon which resulted in the infection traveling up his line. The only sign of infection was redness on the outside. He was feeling good this morning and he did some PT using a walker and played cards with Bayleigh. We were thinking maybe it would be a short stay in the hospital, but no that was not to be. They did a couple of CT scans that showed the perforation and decided this was a pretty serious problem and had to get a general surgeon plus a different neurosurgeon and move pretty quickly to get him downstairs. They removed the shunt but left the piece of shunt that was stuck in the colon so infection could drain and they will remove that later. He had another procedure that will hopefully keep the pressure off his brain and if that works then they can remove the external drain and not have to put the shunt back in. He is now in PICU and we got to visit from 8 to 10 pm. When he felt the bandages on his head and stomach he was very upset and said “Somebody really messed up this time.” He eventually returned to the normal sweet and loveable little boy we are used to and was very concerned about how long it would be till he could eat something. He also asked that when we return for the 12 to 2 visit we bring him some food and his Gameboy because he was “hungry and bored”.

One of the nurses today asked how long have you been here…we know she meant this visit but we answered with “3 years”. Andrew has been thru so much and he has done everything that has been asked of him and he has done it well. He just doesn’t deserve any of this.

Thank you to everyone for their continued prayers and support for all of us.

Bruce and Anne

Tuesday, July 24, 2007 10:45 PM CDT

UPDATE, Wed. 3:15 pm: Andrew is about to head to surgery to get his shunt removed. Apparently the shunt has poked a hole in his colon so they will remove the shunt put some other type of drain in temporarily while colon heals.

We are NOT home now, we are back in the hospital. Andrew had his clinic appt and his doctors felt like he had made good progress from last week but when they looked at his stomach where his shunt line is it was all red. They called the neurosurgery fellow and when he looked at it he said he needed to tap the shunt to get a sample and we’d need to stay a few days to see if there is an infection. If the infection is in the shunt then they might have to take it out and redo it…feel free to curse at this point. Anyway, we are hoping for there to be no infection or for infection to be on the outside of the line and the IV antibiotics will take care of that. Andrew has handled everything so well but when we told him we would have to stay in the hospital again he just started crying…and who can blame him. When the nurses tried to make it better by letting him go to the toy chest, he said “there is nothing in the toy chest that is better than going home”.

We also did get to look at his scans and discuss a couple of treatment options but we can’t start any of that till he recovers a little more. He is gaining strength but he still needs to hold someone with two hands to walk and still needs to be carried for anything more than a few dozen steps. He is sleepy a good bit and takes frequent naps but his appetite is pretty good.

Thanks for checking on Andrew and we’ll update tomorrow with any new info.
- Bruce

Saturday, July 21, 2007 5:03 PM CDT

We are home!! The doctors pretty much left the decision up to me and Bruce. We felt strongly that Andrew would do much better at home and they agreed. You should have seen the smile on his face. His spirits are very good but as I said, physically he has a long way to go. After Bruce carried him upstairs, he was able to walk from the couch to the bed with me and Bruce holding his hands. He is taking a nap now but said the first thing he wants to do when he gets up is have a bath – probably a good idea.

I haven’t had time to mention it but I can’t say enough good things about Andrew’s nurse on 4 Tower and the other nurses that were on duty Monday afternoon. They took such good care of Andrew during a crisis situation and continued to check on us and take care of us even when Andrew was in PICU. We are also very appreciative to Dr. Blount and his team, the PICU team and Dr. Reddy and her team who were with us through all of it. We are blessed to have so many wonderful friends and our families to take care of us as well as the staff and clergy at our church and chaplains at CH. We have also gained a whole other “extended family”, some of them are other families going through treatment and some are CH employees who are now like family. Thank you to all.

Anne and Bruce

Friday, July 20, 2007 7:33 PM CDT

Andrew is feeling better but he has long way to go to get back to where he was a week and a half ago. Right now that is our goal – with all that has happened we are not sure if that is realistic but we are certainly going to try. His doctor told him that if he can get off the IV fluids, take all of his medicine, get out of bed, etc. he can go home tomorrow. It is a tall order to complete in one day but we are all definitely ready to get home. Today he did sit up on the side of the bed (with some help), he stood up for a few seconds (with help), he ate a few bites of jello, soup and chicken fingers and is trying to drink more. He was also able to take his medicine by mouth. Sarah is here now for a visit – they were excited to get to see each other and he is trying to help her with GameBoy. So, it has been a good start. He is very weak and considering that his balance was poor anyway he might need a good deal of help with walking. His arms and hands are pretty shaky and he is having some problems with his vision but we think that is slowly improving. To top it all off, he is pretty sore from the shunt procedure so that makes it a little harder to help him. None of that really addresses the overall problem of his cancer but for now we will just try to get him better before we make any decisions.

Despite the latest setback, Andrew has continued to have his happy disposition and has been very sweet to us and all of his nurses. We are so blessed to have him.
Thank you again to everyone who is praying for us and taking care of us in so many ways – we could never pay you back for all that you have done but please know how much we love you.

Anne and Bruce

Tuesday, July 17, 2007 3:26 PM CDT

When we visited Andrew during the night he was pretty out of it. When we got to see him at the 10 am visiting hours, he had just gotten back from getting a CT scan to check the drain and the spine MRI and they had to sedate him so he was still very sleepy. He looked a bit better. They said he was doing fine and all his numbers were good. They removed his breathing tube around noon. We had been concerned because although he did open his eyes sometimes he hadn’t been real responsive. A little while after getting the tube out he did answer “yes” to “Are you ok?” It was weak and he did nod yes to another question so we feel that is improvement. Dr. Reddy did come by this morning and she had looked at MRI and for spine she said it could be called stable because she said some areas might be a little better and some might be a little worse. Dr. Reddy and a radiologist had reviewed a number of Andrew’s recent brain MRI’s to try to find a reason for the pressure that had build up and they feel like his cerebellum was getting larger and created pressure and reason for that would be disease even though it doesn’t show on MRI. We aren’t sure what to think about all that because we are focused on getting him to recover from the brain injury he received yesterday. He’s still in PICU and we’ll visit him again at 4 pm and they said he might get back to 4Tower later today. We’ll update again later with progress.

11:50 UPDATE: Andrew was more aware and responsive at our last visit. He spoke several times and they are pleased with his progress. They expect he will get to go to a room on 6th floor tomorrow and have another day to recover and then they will put a permanent shunt in Thursday. Neurosurgeon said he needs that to manage the pressure in his brain regardless of what is going on with cancer. We're about to visit him again for 2 hours. It's been 3 years since we had to live these PICU hours and hopefully we won't have to do again after tonight.

Wed AM UPDATE: Last night at 12 when we went to visit Andrew he waved to us as we walked up and said “I Love You” and held his arm out for a hug. That made everything better. He spoke to us and said many of his normal things and moved around. He was sleeping good when we left. They were considering moving him to a room last night because the PICU is full and Andrew is now top of the list for getting out of there. He apparently needs to be on 6th floor because of his drain. We are about to go see him again and maybe we’ll be moving to a room soon.

Wed PM Update: We did get to a room on the 6th floor this afternoon. Andrew has continued to talk and just wants to know when we can "go home". He gave Sarah a big hug when she came to visit tonight. He will have his drain converted to a shunt tomorrow (probably will be after lunch). If things go well they say there is a chance we could be home for the weekend. If you saw how bad he got Monday and how rough he looked after the procedure you wouldn't believe he might be home 5 days later. He is amazing.

Thursday 5 pm: Andrew had his shunt put in and is in recovery. Dr. Blount said everything went normal and he's doing good and we'll see him shortly.

Thanks again to everybody praying for us and taking care of us,
Bruce and Anne

Monday, July 16, 2007 8:28 PM CDT

Sorry, we’ve haven’t updated till now but it has been a very trying day. Andrew had a pretty good Sunday with a visit from a lot of our family but Sunday night he started feeling bad and had to get morphine a couple of times and was sick a number of times. He did great for his MRI Monday morning at 8 and slept thru it and was talking about getting a prize afterwards. Unfortunately, somehow he only got an MRI of the brain and not the spine too. Dr. Reddy came by and said she looked at brain MRI and there was no evidence of any tumors (which we were expecting to hear there was tumors everywhere so mildly good news)…he did have an enlargement of the third ventricle and that was probably causing some pressure on the brain and they would have a neurosurgeon talk to us about a couple of options for draining the excess fluid. In the meantime, Andrew had pretty much been sleeping and very non-responsive and then he started having a couple of seizures. They gave medication for seizures and we agreed to the temporary drain procedure so he needed to get platelets before the surgery. Everything was taking too long and Andrew’s breathing and vital signs were getting bad so they basically called a code to get everyone they needed and started the procedure right in the room and that is the most scared we’ve ever been. They got him to PICU and completed the procedure and they said later that he did have a lot of excess pressure built up and immediately his blood pressure stabilized and he was responsive. We got to see him for a few minutes and he looks a little rough and they have him sedated. We’ll get to visit him shortly during normal PICU hours and maybe he’ll only be there a day or two. He still needs to have the MRI of the spine and the doctors believe the cause of the pressure in the brain could be caused by cancer cells and he may need to have a shunt put in. We hope the relief of pressure will soon give us back the laughing Andrew we had the day before.

Thanks to everyone checking on us and praying for us,
Bruce and Anne

Saturday, July 14, 2007 6:27 PM CDT

Just a quick update. Andrew's been complaining of his head hurting off and on for past few days. This morning he got up and threw up and couldn't keep his medicine or anything else down and head pain wouldn't go away. We went to emergency room around noon and started getting fluids and some morphine for pain. He is being admitted so he can keep getting fluids and his meds thru IV and will probably stay till Monday and they will hopefully do his MRI first thing Monday instead of Wednesday. He is feeling much better and has asked me to bring the GameCube and some soup back to hospital. We need all the prayers we can get for Andrew.

Thanks, Bruce

Will try to update again later if anything changes.

Wednesday, July 11, 2007 7:56 AM CDT

Andrew had his clinic appt Tuesday and his lab numbers were all good except his platelet count was a little low to start chemo this week. Andrew was in a great mood and very happy. A few of the Birmingham Steeldogs football players paid a visit to the waiting room and gave out visors and he thought that was awesome. Dr. Reddy and Dr. Nicole examined him and he was just talking and being silly and one of them said you are a comedian and he said no he wasn’t, she said well you are very funny, and he replied “yes, but I’m not a lizard that changes color”. After everyone stopped laughing, we told him a comedian was someone who got paid to be funny and he said “Oh…then pay up!” and held out his hand.
As for the exam, Dr. Reddy thought he looked great but she did see that his balance is worse than last time and his right hand is shaking a little more. We felt like his balance got better at end of the first cycle of Temodar but in the last couple of weeks it seems to have gone back to about where it was before we started any treatment. Dr. Reddy wouldn’t say that that means there is absolutely progression of disease, but thinks we should just wait for his MRI next Wed. the 18th and see what the results show before making any decisions regarding changing treatment. We are very thankful that he is about the happiest kid in the world right now but we are very concerned about what the results may show and what the future holds.
Thanks for checking on Andrew. -- Bruce

Sunday, July 8, 2007 9:31 PM CDT

We made it to the beach! Andrew’s counts were still good last Monday so, after Bruce finished up with work on Tuesday we headed to the beach. The kids had a wonderful time! Granddaddy cooked ribs on the 4th – one of Andrew’s favorites. The fireworks were great and we got to visit with our cousins from Texas and the Snyder’s from KY. We had 3 great days on the beach – Andrew felt like staying for about 3-4 hours each day. This trip was a little different and harder in some ways. We have been to the beach many times in the past three years when his counts were low or he was tired, etc. and that limited what he was able to do. This time, however, it was his balance that really limited him. In the past it was the side effects from his treatment but now it is the effects of the disease – this is certainly more difficult to deal with. Side effects of treatment can be tolerated because of the greater good…effects of the disease have no greater good. That being said, Andrew still had a great time! He needed a good bit of help maneuvering on the beach but I think he had a smile almost the whole time – even when he was falling down.

We will check labs again tomorrow and see Dr. Reddy on Tuesday. He is scheduled to start chemo again on Thursday if his counts are OK. As always, thanks for checking on Andrew. -Anne

Sunday, July 1, 2007 12:30 AM CDT

Andrew has continued to feel well – his labs were good last week and if they are good this week then we will try to get to the beach for a few days. We have been to the pool a few more times, made a trip to Huntsville, been to a Barons game (with fireworks), been out to lunch, to the movies, over to his friend Sean’s house to shoot air-soft guns (thanks Sean) and Andrew went to Sunday School today for the first time in a while! So, I guess everything is going well…all things considered.

Hopefully, the next time you hear from us it will be a post-beach update! As always, thanks for checking on Andrew. -Anne

Tuesday, June 19, 2007 9:55 PM CDT

Andrew finished his second round of temodar last night. It went smoothly and he continues to feel well. We had a nice weekend – the kids got Bruce the new Tiger Woods golf game for Wii for Father’s Day. Bruce and Andrew enjoyed playing – Sarah and I really aren’t that into it. We spent about 3 hours at the pool on Saturday – Andrew had a really good time and enjoyed a big nap afterward. There are so many milestones – big and small – that we either haven’t gotten around to or that Andrew just has not been able to accomplish due to everything else that he/we have been up against for the past 3 years. One of the small ones is jumping off the diving board…so on Saturday, out of the blue, Andrew decided that he needed to jump off the diving board. Bruce was in the diving well in case he needed any post jump assistance and I was sitting in a chair across the pool telling my friend “I don’t think this is going to go well”. He marched up there and did not hesitate long before jumping. Bruce said he “sunk like a rock” and just kept going down and down…finally his buoyancy kicked in he came back up. He was so proud of himself but didn’t really feel the need to do it again.

Andrew had an appointment with the endocrinologist today – he has only seen her once before (last Dec) just after he was having such a rough time. She is managing his thyroid issues and his adrenal issues. We had hoped to discuss starting him on growth hormone at this visit but with the latest recurrence that is not an option. She did give us a plan to hopefully wean him off the steroid that he has been taking. If we can do that successfully then hopefully some of the steroid “puffiness” and extra weight will come off and maybe he will be a little more comfortable.

Well, that is about it for now. We will have his labs checked some time next week. As always, thanks for checking on Andrew. -Anne

Thursday, June 14, 2007 8:50 PM CDT

Good news – Andrew had his counts checked this morning and they are much better. ANC is over 1,500, platelets are about 200,000 and HCT is 26. So, Dr. Reddy said that he can start his second round of temodar. It will be at a reduced dose – since the maximum dose caused his counts to drop so much and delay treatment by 2.5 weeks it makes more sense to reduce the dose and hopefully take it on time. We’ll see. Andrew’s veins seem to have disappeared – he got two sticks again this morning with no luck so again we had to resort to the finger stick. He was a real trooper about it again.

Andrew has continued to feel well. We have mostly stayed around the house due to his low counts. Sarah went to sibling camp at Camp SAM last weekend and had a really good time. We were a little apprehensive about sending our baby off to camp for two nights but since we had just been to family camp we figured that she would be OK. Fortunately our NP, Mr. Richard was there and when she got a little homesick the first night he had some magic fairy dust that took care of the problem.

Andrew was very excited about his counts being up – we decided to go to the pool this afternoon since he hasn’t been able to go in a while. The kids got to enjoy about 15 minutes in the pool before the rain came. Oh well, it was nice to see rain.

As always, thanks for checking on Andrew. -Anne

Wednesday, June 6, 2007 10:28 PM CDT

Andrew had his labs checked yesterday and there has not been much progress. His red count is 23 – same as last week – you get a transfusion at 20. Usually when your red count gets low you feel pretty tired but Andrew seems to feel about like he has for the past month. I guess he is just used to running on empty – so, no transfusion for now. His ANC is only 150 – up from 95 last week. They pretty much tell you to stay away from crowds if it is lower than 500. His platelets are up to 55,000 which is better but they need to be about 100,000 before he can start his next round. His other numbers need to be better as well. So, we are a week and a half late for his next round and don’t seem to be anywhere near starting. Anyone who has done this knows that you don’t want to delay treatment and knowing that there is disease in his body makes it all the more stressful.

As I said he continues to feel well and is in a good mood just about all of the time so that is a blessing and makes the waiting a little more tolerable. At lab yesterday, Sarah, our wonderful lab tech at the pediatrician had trouble finding a vein in his arm. This has never happened before, so when she came up empty in the right arm Andrew said that it would be OK to try the left arm – she came up empty again, so then she had to resort to the dreaded finger stick. Andrew hates to have a finger stick so after I promised a trip to get ice cream he agreed to the finger stick and finally she got some blood. He was so proud of himself for putting up with all of the sticks and called himself coban monster since he seemed to be covered in it by the time we left.

Please pray for counts to come up. As always, thanks for checking on Andrew. -Anne
.

Thursday, May 31, 2007 10:26 PM CDT

Many thanks to all the people who have e-mailed and offered to give platelets for Andrew – we are so appreciative of the outpouring of support. Andrew had his labs checked today and the good news is that his platelets are up so we don’t anticipate him needing any platelets until after he takes the temodar again. The bad news from the labs is that his red and white counts are both down…so we are still on hold for his next treatment. He still feels pretty well but we will probably have to avoid crowds – including the pool until his white count comes up. As for his red count – he doesn’t need blood yet and hopefully we will have some in the bank tomorrow. So, I will keep everyone posted as to when he will start the temodar again and when I think he might need platelets.

I also wanted to let everyone know about a new website which was started by Jim and Diana Lipski – parents of JJ Lipski. JJ (and his family) is one of the many wonderful friends we have met during our journey – JJ passed away in January after a year plus battle with an inoperable brain tumor - DIPG. The web site is www.icouldbeyourchild.org. I Could Be Your Child has been organized to increase awareness of pediatric brain tumors (primarily dipg), provide funding for research and to provide support to children and families diagnosed with a pediatric brain tumor. It is a wonderful site so please give them a visit.

As always, thanks for checking on Andrew. -Anne

Monday, May 28, 2007 9:24 PM CDT

Overall Andrew has had a pretty good week – we saw Dr. Reddy last Tuesday and she thought he looked good. There had been some discussion about adding another oral chemo this cycle but Bruce and Dr. Reddy and I all agreed that since his symptoms did not seem to be increasing and he seemed to feel well that we would stick with the temodar for now. We had his labs checked on Thursday and we were a little surprised to find that his platelets were quite low. Temodar is know to reduce platelet counts but I guess we thought it would happen sooner than it did – although there really are no rules/norms at this point. When our NP saw his numbers she immediately called me to let know and told us to head down to Children’s for a platelet transfusion. We ran by the house to pick up a few things and she caught us there and told us not to come because there were not any platelets available. His numbers were low but not yet critical so it was OK to wait until Friday. During Andrew’s stem cell transplant we had many wonderful volunteers who donated platelets for him – it looks like we might need to do this again – especially since the summer is usually a shortage time. So, if you are type O or O negative and you are willing to donate platelets for Andrew please send me an e-mail and I will make a guess as to when a good time to donate would be. Platelets have only about a two day shelf life after being processed and not knowing exactly when Andrew will need them makes it a little tricky but keep in mind that they will not go to waste so even if Andrew does not need them you will be doing a great service for someone else.

We have had a nice Memorial Day weekend – the kids both got to see Shrek 3 and Andrew and Bruce went to see Pirates 3 with his buddy Sean, his dad and brothers. We have been to the pool each day – Andrew is good to stay about 2 hours and then he wants a nap. I think Sarah could stay all day. Andrew felt like going out with Bruce late on Sunday to hit golf balls and play a few holes. He hit one into the bunker and was able to get it out on his first try – he was quite proud of himself.

Fatigue and balance seem to be Andrew’s biggest issues. Bruce and I agree that we don’t think his balance is any worse than it was 5 weeks ago when found out that his cancer had returned so that is good. However, we worry a little about him getting up and down stairs – you can’t get in our house without using the stairs and I don’t think the “code” book was very thick when this house was built nearly 60 years ago. The railing that goes down to our basement doesn’t start until you get down two steps – so we decided to install a “safety” bar that Andrew can reach from the top step. I try not to dwell on it but for me it is another reminder of his cancer and all that it has taken from us but Andrew does not see it like that. Yesterday when he and Bruce were leaving to go to the golf course, as they went down the basement stairs, I heard Andrew, in his sweetest voice say “thank you daddy for putting this bar up for me”. Andrew had a choice, he could be angry that he needed the bar or thankful that his dad put it there for him, he chose to be thankful. Maybe we should all think more like Andrew.

Because of his low platelets we are unable to start his chemo today. We will have his labs checked again on Thursday so maybe we will know something then. As always, thanks for checking on Andrew. -Anne

Monday, May 21, 2007 11:19 PM CDT

Well, as you can see, we had some new photos taken. A very sweet friend at church is a photographer and has started her own business – she generously offered to take some photos of the kids. I think she did a great job and I am so touched by her kindness. I have included a link to her web page where you can see a slideshow of the photos and some of her other work. www.jenniferhaglerphotography.com/long.html

We had a wonderful weekend at Camp Smile-A-Mile – it really is a magical place. I can’t believe all of the activities they fit into a short weekend – I will try to give a quick run down. We arrived Friday evening and Andrew and Sarah met their counselors and friends and went off to find their bunks and do a few activities before bed. All of the volunteers are college age or have just finished college – they are all so nice and great with the kids. Saturday the kids did arts/crafts, swam in the pool, had boat rides and more. There were separate activities for the adults but we did have time to spend with the kids as well. Andrew did well but his strength and stamina limit what he is able to do. He needed a nap in the afternoon and did not feel well after the nap but he rallied and was ready for the evening costume party. He and Sarah and our friends Sebastian and Isabella tied for the best costume – see new photos in the gallery. I think Sarah was going full speed the entire time – she had a blast. We met some new friends; got to catch up with some we had not seen in a while and spent time with others that we have become good friends with during all of our time at the hospital/clinic. It was a great weekend and we hope to get to go back some time.

As always, thanks for checking on Andrew. -Anne

Friday, May 18, 2007 0:10 AM CDT

Andrew has had a good week – he went to school Monday, Tuesday and today. He seems to feel as good as he did last week before our yucky weekend. He has been to the ENT, opthalmologist and lab this week – nothing major to report. His labs are still good and we are planning to go to Camp Smile-A-Mile tomorrow for family camp weekend. Andrew has wanted to go to camp and it has just never worked out before – he and Sarah are so excited. The theme for the Saturday night party is “Lost in Space” and Grandmom in Huntsville made them both astronaut suits good enough to get through security at NASA – so they can’t wait.

Thanks again to everyone for their continued prayers and concern. -Anne

Sunday, May 13, 2007 10:07 PM CDT

Well, it has been an up and down week. Andrew went to school last week Tuesday – Thursday for about 2 hours each day. It was a little harder to get him up and going but he was so happy that he went. He really enjoys going to school and the kids in his class are all so nice and happy to see him. Friday was May Day Play Day and he was really excited about going. He wasn’t up to participating in the activities but he was invited to shoot water guns during the relay races – he really enjoyed that - there weren’t many dry people in the area when he was finished. After about 2 hours of fun he abruptly said that he didn’t feel good and he wanted to go home. He napped for a few hours and still did not feel well – head feeling dizzy and he threw up a few times. He couldn’t keep his zofran or anything else down and with his kidney history we decided that he was probably getting dehydrated. By now it was after 6 Friday evening, so our only option was a trip to the ER for fluids. He felt so bad that he didn’t even begin to complain about going. It really wasn’t too bad – since he didn’t have fever and his labs looked OK he just got fluids and we were home before midnight. The fluids definitely helped but he still didn’t feel well Saturday – threw up a few times and slept a good bit. Today he has felt better – still slept a lot and is still very weak and unsteady but was able to eat and drink pretty well. I had a wonderful Mother’s Day that included some original artwork from Andrew and Sarah that I will always treasure. Also, they both got me a gift that they selected themselves. Sarah gave me an Auburn wind chime and Andrew gave me a ceramic cross that looks great in the kitchen – they are both so thoughtful in their own unique way.

Thanks for checking on Andrew. -Anne

Monday, May 7, 2007 7:28 AM CDT

Thank you again to everyone who has continued to pray for Andrew and our family – I have said it before but you will never know how much it means to us. We had a nice get away to Huntsville – the kids had been looking forward to it for some time. They had a belated Easter egg hunt, a trip to the botanical gardens, Sarah drank all of the chocolate milk she could stand and Andrew got to go see Spiderman 3. We felt fortunate to get tickets to one of the sold out shows at the IMAX theatre…that is until we actually tried to watch an action movie in IMAX. It was almost impossible to watch and I’m not really even sure if it was a good movie or not – either way I would not recommend it in IMAX. Andrew was a good sport about it – he said he enjoyed it until he heard us talking and realized it was OK to say what he was thinking – which was that it was a terrible way to see a movie. We’ll stick to the Rave from now on.

After our difficulty with the first dose of temodar he tolerated it well for the next five nights and now he doesn’t take any chemo for the next 23 days. Thanks to all of our friends who have also used this medicine and had helpful hints for taking it. It is great to have that kind of support system but sad that there are so many kids with cancer. We will have his counts checked later this week – hopefully they will not be affected too much. I asked him if he wanted to go to school tomorrow and he said “maybe”. He has been a little more tired but I think it would do him good to spent a few hours at school – we’ll see.

As always,

Thanks for checking on Andrew. -Anne

Tuesday, May 1, 2007 7:09 AM CDT

We had a good weekend mostly playing around the house. Andrew felt good and did his best to play stuff outside but his balance and movement just isn’t the same as it was a few weeks ago. We did tell Andrew and Sarah about what is going on last week. Andrew took it fine and seemed more worried that treatment was going to mess up his and Sarah’s trip to Huntsville this week to stay with my family while Anne and I went on a short vacation to visit friends. We told him that we were trying to find some medicine that he could take at home and not have to be in the hospital and still go to Hsv and he liked the sound of that. Sarah seems ok but she did tell Anne privately she was sad Andrew’s tumor came back.
In between trying to enjoy the weekend, Anne and I were reading all kinds of different info about what chemo drugs to try. It is very difficult when all of the experts in the field can’t agree on what to do for medullo relapse. We met with Dr. Reddy again Monday afternoon to make a decision and we have decided to start on a drug called Temodar which has worked for others in stopping tumor growth. We may add another drug to this after we see how his body tolerates it. Dr. Reddy examined him again and said she didn’t see any change from last week and overall he looks good and his lab work from Friday was back and everything was good except his cortisol was low so he is getting switched to a different medicine from megace. We started the Temodar last night and he is supposed to take it for 5 days then 21 days off during which his counts will drop. Unfortunately, after taking it last night he immediately threw up the medicine so now we have to find out if we can get another day of it and hope he keeps it down tonight. He could see how upset we were that he couldn’t keep it down last night and he started crying and we kept telling him that none of this is his fault.
Right now we plan on all going to Huntsville in a couple of days and have a small vacation there.
Please pray he can keep the medicine down and that it works to stop and reduce his tumors.

- Bruce and Anne

Friday, April 27, 2007 9:50 AM CDT

Once again, Bruce and I are humbled and overwhelmed by all of the prayers and support for Andrew and our family. When Andrew relapsed last April, I said that we knew the odds were not in our favor, so this is not totally unexpected but it is no less difficult to accept. There are some treatment options – mostly phase I, experimental type drugs or some older, traditional chemo drugs that might keep the disease stable for a period of time. Dr. Reddy is consulting with other physicians across the country in an effort to help us sort through the options and choose the most appropriate one for Andrew. There are several factors that we have to consider, the first being his kidneys. Andrew did get a good report from the renal doctor on Tuesday – but it would likely not take much medicine for his kidneys to start going downhill again. So, any medicine that is hard on the kidneys is likely not an option. We are also very concerned with the severity of the side effects. Andrew has been through so much, especially in the past year, we just can’t see using medicine that will make him feel really bad and likely result in more time in the hospital. We want more time with Andrew but not more suffering for him. These are very difficult issues to sort out – please pray that there are good options out there and that we find the right one.

If you have read the journal since about February you know I have talked about how good Andrew has felt and how happy he has been – especially getting to go back to school. He still seems to feel OK and be in a good mood but his balance issues have become quite noticeable in the past week which is making it harder for him to be as active and do things like shoot baskets and play soccer. Andrew has every reason in the world to be unhappy or in a bad mood but he’s just not. There have been some difficult days but he is really just a sweet, happy child. After his appointments on Tuesday, Bruce surprised him with a copy of Night at the Museum. Andrew said “I don’t know how I can ever repay you…so I’ll just have to give you another hug”.

Wednesday, April 25, 2007 5:11 PM CDT

In the past two weeks, Andrew’s balance has been just a little off…not terrible but noticeable to us. At his regular clinic appt. on Tuesday all his lab numbers looked good and Dr. Reddy said he looked great but she did notice the balance. She said we could do his regular 3-month MRI earlier than June. We decided to move it to 2 weeks from now, but then they had an opening today so we decided to find out now instead of stressing for two more weeks. Unfortunately, the news is that he has two new tumor spots on his spine but she said she didn’t see anything in the brain that would cause a balance issue. We will meet with Dr. Reddy tomorrow afternoon to discuss what our best treatment option would be. We haven’t told Andrew or Sarah yet, we may tell him tonight but we might wait till after we meet with the doctor tomorrow. Either way, we’d appreciate if nobody said anything to Andrew or Sarah about the situation for the time being.

Please pray for Andrew and all of us,
-- Bruce and Anne

Sunday, April 15, 2007 7:21 PM CDT

Well, there is not much to report, Andrew is continuing to enjoy school and is staying for about 3 hours; maybe we can stretch that out in the coming weeks. He likes going to soccer and even though he can't really keep up with speed of the game he is hanging in there and really working on his defense. We did get some good news from his last clinic appointment; his kidney numbers had held steady from the previous month. This was encouraging since he had not received fluids in over a month. So, now he is down to a low dose of the megace, really just for the steroid, certainly not because his appetite is poor. He will have a recheck with the renal doc and Dr. Reddy on the 24th of April and he is scheduled to have the hole in his ear drum repaired on the 27th. Hopefully that will go smoothly and he will not miss too much school.

I have left the information about the legislation for more funding for childhood cancer research. Thanks to everyone who has contacted their legislators regarding this act, if you have not, there is still time to do so and your effort will be greatly appreciated by many in the future.

As always, thanks for checking on Andrew. Anne

I am pleased to inform you that the Conquer Childhood Cancer Act 2007 was introduced in the House of Representatives on March 15th and in the Senate on March 19th. Now, we need everyone to help increase awareness of this bill to fund childhood cancer research.

This landmark legislation authorizes $150 million over a five-year period to:
- expand support for biomedical research for pediatric cancer research;
- establish a real-time population-based childhood cancer registry, which enables researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments; and
- provide funding for informational and educational services to families coping with childhood cancer.

We are most fortunate to have great bi-partisan Congressional leaders who have been instrumental in introducing this bill:
Rep. Deborah Pryce (R-OH)
Rep. Chris Van Hollen (D-MD)
Rep. Joe Sestak (D-PA)
Rep. Michael McCaul (R-TX)
Senator Jack Reed (D-RI)
Senator Norm Coleman (R-MN).

"We must launch an all-out battle against pediatric cancers,” stated Congressman Chris Van Hollen. Representative Deborah Pryce (R-OH) shared this message, “Clearly, a compassionate society, and one that is so abundant in its revolutionary research and advancement, can and should place a higher priority on combating childhood cancer – and that is what our bill does."

You can read more about the press conference to introduce the bill on our website, as well as the websites of each member of Congress. With their leadership and our tenacity to secure the needed funding for childhood cancer research, we can reach the day when every child with cancer is guaranteed a cure.

Today, however, we must accelerate the effort to get members of Congress to co-sponsor or support this legislation.

Please contact your Members of Congress and ask for their support of HR-1553 (House bill number) and S-911 (Senate bill number). You can generate the letter on-line:
1. Go to our home page on www.curesearch.org.
2. Click on "write a letter now".
3. Click on "Action Alert" at the top of the page (do this for both the House and Senate).
4. Follow prompts and then add your personal message and modify the content of this letter.

When you complete your communications, we encourage you to ask your friends, colleagues and business associates to join us in this effort. Please note the letter will change to a thank you if your member of Congress has signed on to support the bill.

On a personal note, I was touched by the remarks of Chase Meacham, a 15 year-old cancer survivor of osteosarcoma, who spoke at the press conference on March 15th on Capitol Hill. Chase was treated by a dedicated team at Columbus Children’s Hospital in Ohio. Chase advocated for other children with cancer and shared his dream to become a pediatric oncologist. What a tribute to the work of the members in COG. His full remarks are attached. In the words of Chase, "Cancer is their fight, but it is our responsibility--- together, we will find a cure."

Thank you,

Tricia Benson
Director of External Affairs
CureSearch National Childhood Cancer Foundation
240-235-2208

Wednesday, March 28, 2007 10:19 PM CDT

Andrew has been having a great time at school! He has been staying for about 2 hours/day this week and when I pick him up he is grinning from ear to ear. He is just so happy to be able to do something normal and be with the other kids. I know that I have said it before but it is worth repeating – everyone at his school has gone above and beyond to help him while he was out and with his transition back. The kids in his class have been so good to him and have really helped him feel at home.

We had a nice spring break with a trip to the beach the first half of the week. The kids enjoyed getting on the beach a little and putt-putt golf. The b-ball goal is still a hit and Andrew has also had few trips to the golf course to hit balls with Bruce. Andrew and Sarah are both enjoying soccer as well and last Sunday Andrew went to his Sunday school class for the first time in almost a year – he was so happy to be there. I feel like all of the hard work, pain and suffering of the past year is finally starting to pay off. Certainly, there was no guarantee that it would and there is no guarantee that it will last…but we will enjoy it for now.

On that note I am attaching some information about legislation that would greatly impact funding for childhood cancer. During our 3 year journey many people have asked what they could do to help…well this is something that simple that should not take much time but could have a huge impact on children who are diagnosed in the future. Please consider taking action.

Greetings!

I am pleased to inform you that the Conquer Childhood Cancer Act 2007 was introduced in the House of Representatives on March 15th and in the Senate on March 19th. Now, we need everyone to help increase awareness of this bill to fund childhood cancer research.

This landmark legislation authorizes $150 million over a five-year period to:
- expand support for biomedical research for pediatric cancer research;
- establish a real-time population-based childhood cancer registry, which enables researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments; and
- provide funding for informational and educational services to families coping with childhood cancer.

We are most fortunate to have great bi-partisan Congressional leaders who have been instrumental in introducing this bill:
Rep. Deborah Pryce (R-OH)
Rep. Chris Van Hollen (D-MD)
Rep. Joe Sestak (D-PA)
Rep. Michael McCaul (R-TX)
Senator Jack Reed (D-RI)
Senator Norm Coleman (R-MN).

"We must launch an all-out battle against pediatric cancers,” stated Congressman Chris Van Hollen. Representative Deborah Pryce (R-OH) shared this message, “Clearly, a compassionate society, and one that is so abundant in its revolutionary research and advancement, can and should place a higher priority on combating childhood cancer – and that is what our bill does."

You can read more about the press conference to introduce the bill on our website, as well as the websites of each member of Congress. With their leadership and our tenacity to secure the needed funding for childhood cancer research, we can reach the day when every child with cancer is guaranteed a cure.

Today, however, we must accelerate the effort to get members of Congress to co-sponsor or support this legislation.

Please contact your Members of Congress and ask for their support of HR-1553 (House bill number) and S-911 (Senate bill number). You can generate the letter on-line:
1. Go to our home page on www.curesearch.org.
2. Click on "write a letter now".
3. Click on "Action Alert" at the top of the page (do this for both the House and Senate).
4. Follow prompts and then add your personal message and modify the content of this letter.

When you complete your communications, we encourage you to ask your friends, colleagues and business associates to join us in this effort. Please note the letter will change to a thank you if your member of Congress has signed on to support the bill.

On a personal note, I was touched by the remarks of Chase Meacham, a 15 year-old cancer survivor of osteosarcoma, who spoke at the press conference on March 15th on Capitol Hill. Chase was treated by a dedicated team at Columbus Children’s Hospital in Ohio. Chase advocated for other children with cancer and shared his dream to become a pediatric oncologist. What a tribute to the work of the members in COG. His full remarks are attached. In the words of Chase, "Cancer is their fight, but it is our responsibility--- together, we will find a cure."

Thank you,

Tricia Benson
Director of External Affairs
CureSearch National Childhood Cancer Foundation
240-235-2208

Andrew's next clinic appointment is April 4th – between now and then all we have planned is school and having fun. As always, thanks for checking on Andrew. -Anne

Saturday, March 10, 2007 10:00 PM CST

What a relief it was to get good news on Wednesday. I can’t even begin to explain how much harder this is since Andrew relapsed and I think Bruce and I both had ourselves even more “worked up” (if that’s possible) since everything seemed to be going just like last year when he relapsed. It’s the same time of year, Andrew is really starting to feel better – just like last year, he is finally getting to do something fun, Upward soccer – just like last year. There is never a good time or a good way to relapse but when Andrew did relapse last year it was at a point when he felt better than he had in a long time and he wasn’t having any symptoms – it was just such a shock. It’s is great to have it behind us but I’m sure we will not feel any better when he has his next one in June.

As far as his appointment on Wednesday there really was only one important result – the MRI – but we did get his other labs as well. His kidney numbers are good as expected – he has received fluids a couple of times over the past few weeks and he continues to eat like a horse. He now weighs 60lbs!!!! We are not thrilled about this and we have really decreased the megace a good bit but his appetite continues to be BIG. Of course the problem is that anytime we have gotten him off the megace everything goes down hill. So, we will keep him on a small does and hope the appetite levels out and all the new exercise helps. His immune system numbers are better and we are going to let him gradually work his way back into school – yea!!! He is really excited about getting to go – it has almost been a year since he has gone – hard to believe. I can’t say enough about how great everyone at his school has been – since his diagnosis the summer before he even started but especially in the past year when he has not been able to be there. So many of his teachers have continued to check on him and work with him after hours and do everything possible to help him with school work and still feel connected.

As I said, Andrew is feeling much better and has been for almost a month now. He has had a few soccer practices and his first game today. Even though he doesn’t have much stamina and can’t run very well he loves to be there and has done better than I expected. He mentioned that he really wanted to play defense – less running – he’s always thinking! Bruce put up a basketball goal for us last week and the kids have really enjoyed it. It comes down to about 7ft. so Andrew and Sarah can both make some baskets and Bruce can even dunk when he tries hard. It has been great exercise for Andrew and he really loves it.

Well, that’s about it for now – Andrew does not have another clinic appointment until April 4th. Thanks again to everyone for all of their prayers during this our stressful week and thanks for checking on Andrew. -Anne

P.S. New Photos in Gallery

Wednesday, March 7, 2007 4:57 PM CST

Thank You! Thank You! Thank You, Lord! The MRI looked good and we'll update with more later.

Thank you for all your prayers,
Bruce & Anne

Wednesday, February 28, 2007 7:21 AM CST

It has been a good couple of weeks – Andrew is feeling much better and has been in a really good mood. The appetite stimulant has really kicked in again which is a bit of a problem – just like before it is really hard to regulate. All he can think about is food – his adjustable waist pants are maxed out and he still has trouble getting them buttoned. He probably weighs 58 lbs which is a good 8 to 10 lbs over what he needs to weigh. Maybe we can find that middle ground soon.

He is really looking forward to his first soccer practice this Saturday but I’m not sure how that is going to go – he is so out of shape from being so inactive for the past 8 months. I think he will be happy just to be out there and hopefully this will be the start of more activity and better things to come.

As I mentioned last time his MRI is Wednesday, March 7th – we appreciate all of the prayers and encouragement.

As always, thanks for checking on Andrew. - Anne

Wednesday, February 14, 2007 8:28 PM CST

Well, it has been an up and down few weeks – Andrew was sick last week with a bad cough that turned into a sinus and ear infection. We have tried two different antibiotics and he is better but the amoxicillin has been pretty hard on his stomach. He was very disappointed to miss out on a birthday party and the Mercedes Kids Marathon but he just wasn’t up to it. He was able to go to his class Valentine party today and he really enjoyed it. After the party he had his clinic appointment and the good news was that his creatnine was down again – today it was .9 – down from 1.3 two weeks ago. This was not too surprising since he had gotten fluids 3 times over the past two weeks (at home). We are not in a hurry to make a decision as to what to do about the kidney problem long term. So, our short term plan is to do fluids at home once a week for the next three weeks.

Andrew’s next appointment is March 7th for his MRI. I can’t believe it is already time to do that again. He felt so good at his last MRI in December but it didn’t last – we keep talking about him getting a break from “all things medical” but it just hasn’t happened yet - maybe after this next hurdle. We are really nervous about the upcoming MRI as it has now been about the same amount of time that it was from the end of his regular treatment until he relapsed. Please pray for a clear MRI.

As always, thanks for checking on Andrew. -Anne

Wednesday, January 31, 2007 2:34 PM CST

The Lord welcomed one of his children home tonight. John Joseph Lipski August 18, 2000 - January 31, 2007 Please be in prayer for his family.

Andrew has continued to feel well – he was able to get his IV fluids at home last Friday which was very nice. He worked with his homebound teacher and I got a few things done around the house. We went to the circus that night and the kids really enjoyed it. He had his clinic appointment today and we were pleasantly surprised to find out that his creatnine has come down from 2.1 last Tuesday to 1.3 today. That is still higher than it needs to be but a good improvement in the past week. Our plan is to get IV fluids at home 3 days over the next two weeks and then return to clinic in two weeks to see where his numbers are at that point. So, I feel like the problem is under control for the short term but we are still not sure exactly what the long term solution is going to be. The appetite stimulant has him eating a little better but still not great but he has only been back on that for a week. The renal doctor feels that Andrew needs 2 liters of fluid daily for his kidneys to function properly and Andrew is just not going to be able to do this on his own. A more long term solution might be a G-tube but we would like to exhaust other options before we go to that.

I would also ask that you keep the family of JJ Lipski in your prayers – JJ is a courageous little boy who has been battling an inoperable brain tumor for over 15 months. His family’s faith and determination have been amazing. You can read about their journey at www.jjsmiracle.com or www.carepages.com (carepage name is jjsmiraclepage).

As always, thanks for checking on Andrew. - Anne

Wednesday, January 24, 2007 9:02 PM CST

We met with the renal doctor yesterday – labs were drawn first and his creatnine was higher again. This was not what we wanted to hear and it was higher to the point that something needed to be done. The doctor gave us the choice of being admitted for a few days or coming to clinic each day to get fluids to try to help his kidneys. I, of course, told him we would be admitted if that is what we needed to do – he said that he thought it would be OK to wait until this morning and come to clinic. So, we were at clinic first thing and he got hydrated for 8 hours. Andrew did a little school work, played game cube, watched a DVD and took a little nap. Bruce brought him a happy meal which made him happy – I think it was a visit from dad more than the food. So, it was not too bad of a day – just long. He will have fluids again on Friday which our nurse practitioner was able to set up with home health so we don’t have to go to clinic – yeah! It will be nice for both of us to be at home. Our next clinic appointment will be next Wednesday for labs to see how his kidneys are doing and get more fluids if necessary.

No one has been able to totally put their finger on exactly what the problem is – the renal doc basically thinks that his kidneys were damaged (by all of the chemo) to the point that Andrew is not able to keep himself adequately hydrated. The question is what to do about this long term. Since his stem cell transplant we have noticed several patterns in how he feels and his overall health – the main trend is that everything is GREAT when he is on megace (appetite stimulant) and everything starts to go downhill when he gets off of it. Last fall we thought that the problem may have been that we took him off of it too quickly but this last time we weaned him slowly over about 6 weeks and we are still having problems. So, there is something about the megace – we decided with his docs to put him back on half the dose hoping that he will not eat too much but still have some of the positive effects. Beyond that we will hydrate as best we can and see what the labs look like next week.

Thanks for continued prayers and for checking on Andrew.
-Anne

Wednesday, January 17, 2007 8:46 PM CST

Andrew had his clinic visit today and his creatnine was up… again. It is not as high as it was in October when he spent a week in the hospital but it has continued to climb at each visit (Dec. 20, Jan 3 and today). We knew going into his stem cell transplant that he had some permanent kidney damage from the high dose chemo that he had taken. Some adjustments were made in the doses of chemo during stem cell to try to keep his kidneys from being further damaged. Add this to the long list of serious side effects that Andrew will have to deal with. We will return to clinic tomorrow so Andrew can receive IV fluids to keep him from becoming more dehydrated. He also has a consultation with the renal doctor next week – we met with him while Andrew was in the hospital last October – we’ll see what he has to say. It is hard to watch this happen again and feel like there is nothing we can do to stop it. Every time I think we have turned the corner something else happens – while I’m at it I forgot to mention that his CD4 level (immune system) was not nearly high enough to return to school and he went to the dentist last week and she suggested that we may need to pull some of his baby teeth to make room for the permanent ones which should have been in by now – maybe someone could do that while he is under anesthesia having the hole in his ear drum fixed. Is anyone out there familiar with the book "Alexander and the Terrible, Horrible, No Good,Very Bad Day"? – We are thinking about moving to Australia.

As always, thanks for checking on Andrew. - Anne

Thursday, January 4, 2007 8:50 PM CST

Happy New Year! We hope everyone had a wonderful Christmas. Andrew and Sarah both enjoyed Christmas very much and we are looking forward to 2007.

Andrew had his clinic visit on Wednesday – everything looked good with the exception of his creatnine (sp?) level – which is starting to creep back up. This is one of the problems that he had back in October when he had to be admitted. Basically, creatnine gives you an idea of kidney function – so we are a little concerned with this. We have talked with the nutritionist and come up with a goal of how much he has to drink each day – so now I can follow him around with a water bottle like a trainer. They also repeated the labs which will give us a better idea of his immune function but it will take a few days to get the results. We are hoping that this number has come up significantly since it was checked in November – if so we can start planning for a gradual return to school. Andrew has not been able to attend school since last April when we learned of his relapse. We feel strongly that he needs to return so that he can be with his peers and be a normal kid again – hopefully that will happen soon.

As always, thanks for checking on Andrew. -Anne

PS - The Knockin' Cancer Out of the Ballpark event has gone over the $40,000 mark! Thanks again to everyone for their generosity.

Wednesday, December 20, 2006 9:00 PM CST

Andrew had a clinic visit today and his labs continue to look good. His weight has held steady at 54lbs. and we are close to getting him completely off the appetite stimulant. We are excited to have 2 weeks off until our next clinic visit. We were able to visit with our friends, the Howell’s, on what was a very big day for them – today was James’ last day of treatment. Way to go James!! He has done an awesome job and I’m sure he is ready for a break from chemo and clinic. We will continue to pray that today was the last day that James will ever have to take chemo.

Many people have asked me since Andrew’s last report - “is he cured?” – “is he completely finished with treatment?” – I don’t have a perfect answer. I know that I don’t speak for everyone who has a child with cancer but for me all the good reports and clear MRI’s are, of course, exciting (and obviously better than the alternative) but they always fall a little short of a total victory. Just because you have a good report or MRI certainly does not mean the next will be good – we know that all too well having to live with a relapse. I said this before Andrew’s relapse – you never really get to win, you just keep trying not to lose. Andrew’s clear MRI two weeks ago was another day that we didn’t lose and we just continue to pray that he is cured and there will never have to be anymore treatment.

With all of the stress and relief of the last MRI I forgot to mention that Andrew had a visit with the ENT and couple of weeks ago and it turns out that he has a hole in his left eardrum which is not going to heal on its own. Because of this the hearing in his left ear is even more impaired and the hearing aid is not really helping at this time. So, he needs to have it surgically repaired – in our spare time. We wanted to give him a little break before having to deal with something else so we will probably schedule it in February. Hopefully it will not be too big of a deal and his hearing should improve some after that - then maybe we can make a decision about which hearing aids to order.

We are so thankful that Andrew is finally feeling good and has been able to enjoy his birthday (which seems to have been going on for a month now) and the excitement of Christmas approaching. Thanks to everyone for checking on Andrew and for continued prayers. We hope you all have a wonderful Christmas. -Anne

Wednesday, December 6, 2006 12:58 AM CST

What a great day…the MRI report was “Looks good!” The dread of the MRI and the waiting does not get any better especially since the relapse. I’m sure some of the other cancer families that read this can identify, but we made it past another one and we’ll try to put off worrying about the next one for a few months and just enjoy the holidays. Our day started early with the 7 am MRI and then on to clinic to wait and when they finally called us back we made the nurse practitioner give us the good/bad signal before we saw the doctor. He got weighed and is up to 54 pounds! That’s something like 8 pounds in about 3 weeks...with several birthday parties and Christmas goodies he may be “rolling” into the New Year. Dr. Reddy said he could get the feeding tube out today and told Andrew to go ahead and remove the band-aids holding it on his cheek and she’ll get a nurse to come take it out…when she left the room Andrew went ahead and pulled it out himself…it was like watching a magician except that it was making ME gag to watch. He was quite happy about getting it out and said he thinks he’ll be able to eat more…so buy stock in Spaghetti-O’s. He wanted to go play a game of Galaga at Children’s Harbor before we left and on the way we stopped by to visit a friend in the ICU waiting room and while there got to meet Tommy Tuberville and Andrew got to tell him that he has an autographed football from Coach Tub on the “place where we keep the stockings”. Then at Children’s Harbor they give each child a token to try the game with the claw that tries to grab a stuffed animal and lo and behold he moves that claw all over the place and then sends it down and it got one. I told him that as long as I’ve been alive I’ve never seen anyone get anything out of one of those machines. He was so pleased and immediately said that he wanted to give it to Sarah and now Sarah has already named it and placed it among her herd of stuffed animals.

Also, when we saw Dr. Reddy, Andrew gave her the $10,000 check that Vestavia High School raised for cancer research. Andrew and James attended the pep rally before the game with Hoover to accept the check. What an awesome effort by all of the kids at VHHS – thank you so much.

Thanks for all the prayers for Andrew. – Bruce & Anne

Tuesday, November 28, 2006 10:30 PM CST

The food hog is back, with a vengeance. Andrew could be the spokes person for megace (appetite stimulant) – it works wonders for him. It kicked in before Thanksgiving and he has been eating constantly and it also seems to make him happy – or maybe it’s just all of the good food - who knows. We had a clinic visit today and he weighs almost 52 lbs. We are trying to do a better job of moderating the medication and eating than last time he was on it. He goes from hardly eating to overeating so quickly and added 6 lbs in two weeks! However, last time, I think because it happened so fast I probably took him off the megace too quickly. So we are gradually trying to decrease the dose as well as decrease the tube feedings. He getting a much smaller amount through the tube now and we may go to every other night and plan to take it out next week, although, it has not really bothered him. He twirls it around on his fingers like a lifeguard with a whistle – I think he might miss it when it’s gone.

We had a nice Thanksgiving, here and in Huntsville. The kids had a small Birthday party in Huntsville with Bruce’s family (see new photo) – Sarah will be 6 on Dec.1st and Andrew will be 8 on December 22nd. They enjoyed getting an early start on the festivities. Andrew has been feeling much better and playing outside some with the nice weather. He continues to have some problems with his ears so we have not been able to order his hearing aids yet but he is doing great with the loaner set. He has gotten much more compliant with them and even asks for them sometimes. He has an appointment with the ENT on Monday so we will see if he has any ideas.

Finally, Andrew will have an MRI on Wednesday, December 6th. Please pray that the news will continue to be good. Thanks for checking on Andrew. - Anne

Wednesday, November 15, 2006 9:59 PM CST

Well, I think things are slowly starting to improve. Andrew started back on the appetite stimulant last week and his eating has begun to pick up. We had another clinic visit today and his lab numbers looked good. We don’t have to go back for two weeks – that is a nice break but obviously he will have the feeding tube for at least that long. I am hoping that he will be taking in a normal amount of calories by then and we can be confident in removing the tube at that time – we’ll see. Andrew is definitely feeling better – this is more like how I had hoped he would feel this fall – it just seems that we took a two month detour. After his last MRI in September he was feeling so good and we were hoping for a break from “all things medical” but it seems that all we have done for the past two months is go to the doctor and now it is almost time for another MRI. He is scheduled for his MRI on December 6th so please pray for good news and then maybe he can have a break from “all things medical”. Thanks for checking on Andrew. -Anne

Sunday, November 5, 2006 9:00 PM CST

Andrew has had a pretty good week since getting out of the hospital – he looks and feels much better. However, we continue to be concerned with his lack of eating. He is getting half of his calories through his feeding tube at night but I don’t think that he is eating enough during the day. He knows that eating more is the way to get rid of the feeding tube but his appetite is not good and even when he does want something he can’t seem to eat much of it. Hopefully this will work itself out.

Andrew had a good time trick-or-treating – he was Darth Vader. We went with some friends and took a wagon in case he was too tired to walk. As far as the wagon was concerned it went as expected – Andrew did not want to use it – he wants so much hang in there like the other kids. Sarah, on the other hand, had no problem jumping in the wagon right off the bat – typical. So, we ran her out of it - Andrew did need to ride some toward the end. Overall it was a good night.

Friday afternoon we were invited to attend the high school pep rally – the high school has been raising money for 3 weeks to add to the money that was raised with the softball benefit. We are so appreciative to Cas McWaters and the SGA for this opportunity and to Coach Anderson for his kind words and support. Most of all thanks to the students of Vestavia High who took on this project with generous hearts and lots of enthusiasm - they raised over $5,000 for brain tumor research!!!!

Thanks for all of the continued prayers for Andrew and our family – it means more to us than we could ever express. - Anne

Friday, October 27, 2006 6:43 PM CDT

Well, we are home again and Andrew is feeling much better. It was a nice change to go to the hospital and come home feeling better than when you went in. Andrew had not been feeling well for about a month now and we have been trying to get to the bottom of it. As it turns out there were probably several factors getting him down and everything just “snowballed” to the point where he needed to be admitted so we could get it all straightened out. He was dehydrated, again, which was not a surprise since he had not been eating or drinking enough for about 4 weeks. The dehydration was contributing to his kidneys not working properly and also had his electrolytes out of balance. His hematocrit was low so he needed blood but the dehydration masks this so he has probably needed blood for some time but we did not know it. His calcium was high (not really sure why) which can make you feel bad. He has hypo-thyroidism due to the radiation which can also reduce your energy level. So, he has had about 4 or 5 good reasons to feel really bad. I probably would not have gotten out of bed if I felt that bad but he just kept on trying – going to the softball benefit on Sunday and trying so hard to have a good time. He feels and looks much better but it will take a little time get back to feeling as good as he did a month ago. He did have to get a feeding tube while he was in the hospital and he did have to come home with it. He was upset about it at first but seems to be OK with it now. Hopefully we will not need it long – but it will help him transition back to eating a normal amount without him having to do it all at once.

Thanks again to everyone who has supported the Knockin’ Cancer Out of the Ballpark benefit – donations have continued to come in and the grand total is now over $28,000 raised for brain tumor research at Children’s Hospital. As always, thanks for checking on Andrew. - Anne

WOW!! The Second Annual Knockin’ Cancer Out of the Ballpark benefit was a huge success. Despite the muddy conditions it was bigger and better than last year – thanks to all who were able to attend (we probably owe you all a new pair of shoes) and all who donated to the cause. It looks like the grand total will be OVER $ 26,000 raised for The UAB Pediatric Neuro-Oncology Program at Children’s Hospital!!

There are so many people to thank and I want to start with Les Stuedeman, head coach of UAH and Beanie Ketcham, head coach of Samford and their teams. I hope you both know how much we appreciate this opportunity. It would not have happened without you – Thanks.

Our sponsors: Tidmore Flags, Imaging Business Machines, CraneWorks, U.S. Pipe, Myrick, Gurosky and Associates, Altec, The Janie Sims Children’s Foundation, Hueytown Trussville Moody Rehab and Wellness, Taziki’s Greek Fare and BellSouth.

Thanks to American Printing for our posters and bookmarks, SuSu Davis (Upstairs South Screen Printing) for our awesome t-shirts again this year, Sneaky Pete’s for the hot dogs, Johnny Ray’s for the BBQ and Coke for the drinks.

Thanks to everyone who donated raffle prizes: Lucy’s on Thirty-One (now open!!), American Cycle Centers, Andrew’s Sport and Fitness, Anthony’s Carwash, Applebee’s, Carlile’sBBQ, Diplomat Deli, Grump’s Great Grill, Marc-1 Carwash, Milestone Books, Nonna’s, Starbucks, Up the Creek, V. Richards and Perry Debardeleben for the polar bear.

Very special thanks to the following folks – without these people working very hard on Sunday morning we never could have gotten it all together. My brother, Phillip Irvine (aka Mac Daddy, Uncle Buzzy, etc), John and Kelli Rucker, Preston Wright, Krista Whatley, Karen Braune, Michele Blackmon. My parents (Mitz and Phil Irvine), Roseanne Stuedeman and SuSu Davis for cooking all of the hot dogs. Mr. and Mrs. Howell for preparing the BBQ. Bruce’s family for taking care of the kids while we prepared for the game. Artistic support from Mary Lembke with the signs and Sponge Bob. Stephanie Meadows and all of the VHHS volunteers. Byron and Over The Moonwalk, Bud’s Best Cookies, B & G Equipment and Supply, Children’s Hospital Volunteer Services – Clowns and face painting. Nena Moon and everyone from Hand-In-Paw. Finally, thanks to Emily Hornak of Children’s Hospital for her energy and enthusiasm and my co-chair – Jim Howell and his family for all of their hard work and efforts to make it “bigger and better” this year.

I would also like to recognize Dr. Alyssa Reddy, Dr. Susan Spiller and nurse practitioners Richard Brown and Allison Wooldridge – they are the neuron-oncology team and they work so hard each and every day trying to save the lives of the children they are working with. We know that research does not happen overnight – it happens in baby steps and the money raised with this event will help with those baby steps. Our hope is that children who are diagnosed in the future will not only have better survival rates but will suffer less of the long term side effects that often come with treatment. Thanks so much to everyone who has given so generously to this effort.
Anne, Bruce, Andrew and Sarah

P.S. – Bruce added some new photos.

Wednesday, October 25, 2006 9:37 AM CDT

On Tuesday Andrew had his clinic visit and his lab numbers and kidney functions were not what they should be so he got admitted to stay overnight and get fluids. They also decided to put a feeding tube in him last night to help get some food in him. This morning some lab numbers were better but he might need some blood so not sure if we'll get out today. I'll update later.

WOW!! The Second Annual Knockin’ Cancer Out of the Ballpark benefit was a huge success. Despite the muddy conditions it was bigger and better than last year – thanks to all who were able to attend (we probably owe you all a new pair of shoes) and all who donated to the cause. It looks like the grand total will be OVER $ 26,000 raised for The UAB Pediatric Neuro-Oncology Program at Children’s Hospital!!

There are so many people to thank and I want to start with Les Stuedeman, head coach of UAH and Beanie Ketcham, head coach of Samford and their teams. I hope you both know how much we appreciate this opportunity. It would not have happened without you – Thanks.

Our sponsors: Tidmore Flags, Imaging Business Machines, CraneWorks, U.S. Pipe, Myrick, Gurosky and Associates, Altec, The Janie Sims Children’s Foundation, Hueytown Trussville Moody Rehab and Wellness, Taziki’s Greek Fare and BellSouth.

Thanks to American Printing for our posters and bookmarks, SuSu Davis (Upstairs South Screen Printing) for our awesome t-shirts again this year, Sneaky Pete’s for the hot dogs, Johnny Ray’s for the BBQ and Coke for the drinks.

Thanks to everyone who donated raffle prizes: Lucy’s on Thirty-One (now open!!), American Cycle Centers, Andrew’s Sport and Fitness, Anthony’s Carwash, Applebee’s, Carlile’sBBQ, Diplomat Deli, Grump’s Great Grill, Marc-1 Carwash, Milestone Books, Nonna’s, Starbucks, Up the Creek, V. Richards and Perry Debardeleben for the polar bear.

Very special thanks to the following folks – without these people working very hard on Sunday morning we never could have gotten it all together. My brother, Phillip Irvine (aka Mac Daddy, Uncle Buzzy, etc), John and Kelli Rucker, Preston Wright, Krista Whatley, Karen Braune, Michele Blackmon. My parents (Mitz and Phil Irvine), Roseanne Stuedeman and SuSu Davis for cooking all of the hot dogs. Mr. and Mrs. Howell for preparing the BBQ. Bruce’s family for taking care of the kids while we prepared for the game. Artistic support from Mary Lembke with the signs and Sponge Bob. Stephanie Meadows and all of the VHHS volunteers. Byron and Over The Moonwalk, Bud’s Best Cookies, B & G Equipment and Supply, Children’s Hospital Volunteer Services – Clowns and face painting. Nena Moon and everyone from Hand-In-Paw. Finally, thanks to Emily Hornak of Children’s Hospital for her energy and enthusiasm and my co-chair – Jim Howell and his family for all of their hard work and efforts to make it “bigger and better” this year.

I would also like to recognize Dr. Alyssa Reddy, Dr. Susan Spiller and nurse practitioners Richard Brown and Allison Wooldridge – they are the neuron-oncology team and they work so hard each and every day trying to save the lives of the children they are working with. We know that research does not happen overnight – it happens in baby steps and the money raised with this event will help with those baby steps. Our hope is that children who are diagnosed in the future will not only have better survival rates but will suffer less of the long term side effects that often come with treatment.
Thanks so much to everyone who has given so generously to this effort.
Anne, Bruce, Andrew and Sarah

P.S. – New photos added.

Monday, October 16, 2006 10:16 PM CDT

******Sunday Morning Update********

The softball benefit will go on as scheduled. It will be a little wet so I suggest old shoes and you might want to bring a chair. Gates open at 1:00 and we hope you can make it!

*****************************************

We are working on the last minute details for the softball benefit which is coming up this Sunday – Andrew and Sarah are very excited about it and we hope to see you there. Andrew and I had a nice visit to the beach even though the weather was not great. Andrew did decide to stay for the rest of the week with his Granny and Granddaddy and I’m sure he will have a good time. The magnesium infusion he got at clinic last week made him feel a little better… but it has upset his tummy again – I’m not sure when he is going to get off this merry-go-round. We had to start back with the magnesium supplement daily as well so this may keep his tummy upset. He has not eaten very well since last week but the report from the beach is that he ate better today so maybe things are improving. As always, thanks for checking on Andrew. –Anne

DIRECTIONS TO THE SAMFORD UNIVERISTY SOFTBALL FIELD:

The Samford University campus is located off Lakeshore Drive in Homewood. To get to the best parking for the softball field use the secondary entrance to campus. If you are coming from I-65/Greensprings it will be the first campus entrance to the left. There is a traffic light and a small guard gate at the entrance. If you are coming from Brookwood Mall – go past the main entrance to the campus and turn right at the light with the small guard gate. After you turn into campus take the first left into a remote parking lot – follow the road all the way to the back of the large parking lot. Park here and look for balloons and a table where a volunteer will direct you to the main gate. It will be a short walk up a gravel road to get the field.

As you can see from the above photo we are well underway with planning this year’s softball benefit and I wanted to take a minute to give you more of the details. Once again we are working with Samford University and the University of Alabama at Huntsville to put on a benefit softball game. Last year’s event raised over $12,000 for the UAB Pediatric Neuro-Oncology Program at Children’s Hospital for brain tumor research. Thank you all for your generous support. Many of you have already received a letter regarding the event and I am going to send out the flyer on e-mail as well. Please forward it to anyone you think might be interested. Also, if you are the parent of a brain tumor patient and would like to be involved in the event please contact me.

This year the Second Annual Knockin’ Cancer Out of the Ballpark benefit is scheduled for Sunday, October 22nd. Several other brain tumor patients and their families will be joining our efforts. The event last year was a wonderful family event and it promises to be bigger and better this year. The gates will open at 1:00 – there will be a Fun Zone for kids with the therapy dogs from the Hand-In-Paw organization, moon walk, face painting, games, give-aways, concessions, college mascots and more. All kids are invited to participate in the pre-game ceremony starting at 1:45. The game will start 2:00 and admission is free with a donation.

If you cannot attend the game but would like to make a donation: Make checks payable to Children’s Hospital and write “softball game” on the memo line. All donations are tax deductible and can be sent to:

Anne Long
2509 Shades Crest Rd.
Birmingham, AL 35216

Wednesday, October 11, 2006 2:45 PM CDT

We are headed to the Beach!! Andrew had his clinic appointment yesterday – he has still not been feeling great – but not awful either. It just seems that he doesn’t have much energy. We had stopped his magnesium supplement a week ago to try to help alleviate the stomach issues and it did help – his tummy is better. But, guess what? Now his magnesium is low which can make you feel pretty bad. So we stayed at clinic yesterday to have a magnesium infusion and I think he feels a little better today. We got the OK to head to the beach so Andrew and I are going tomorrow and I’m going to stay through Sunday. As promised, Andrew is going to stay the whole next week with his granny and granddaddy. They will all be coming home on the Saturday before the softball game. Grand mom is going to be helping out with Sarah while I’m gone and I’m sure they will have a great time, too. Andrew staying at the beach will give me some time to finish up some last minute stuff for the game. I will post more information next week including directions for parking. Thanks for checking on Andrew. –Anne

As you can see from the above photo we are well underway with planning this year’s softball benefit and I wanted to take a minute to give you more of the details. Once again we are working with Samford University and the University of Alabama at Huntsville to put on a benefit softball game. Last year’s event raised over $12,000 for the UAB Pediatric Neuro-Oncology Program at Children’s Hospital for brain tumor research. Thank you all for your generous support. Many of you have already received a letter regarding the event and I am going to send out the flyer on e-mail as well. Please forward it to anyone you think might be interested. Also, if you are the parent of a brain tumor patient and would like to be involved in the event please contact me.

This year the Second Annual Knockin’ Cancer Out of the Ballpark benefit is scheduled for Sunday, October 22nd. Several other brain tumor patients and their families will be joining our efforts. The event last year was a wonderful family event and it promises to be bigger and better this year. The gates will open at 1:00 – there will be a Fun Zone for kids with the therapy dogs from the Hand-In-Paw organization, moon walk, face painting, games, give-aways, concessions, college mascots and more. All kids are invited to participate in the pre-game ceremony starting at 1:45. The game will start 2:00 and admission is free with a donation.

If you cannot attend the game but would like to make a donation: Make checks payable to Children’s Hospital and write “softball game” on the memo line. All donations are tax deductible and can be sent to:

Anne Long
2509 Shades Crest Rd.
Birmingham, AL 35216

Wednesday, October 4, 2006 3:17 PM CDT

A week later and Andrew is still having problems with his tummy being upset so now we are going on two weeks of this. He still doesn’t feel really bad but he is not eating well and I think his energy level is down because of that. We went to clinic yesterday and not surprisingly he was a little dehydrated and needed fluids. It was not a big deal but it made for a long day. He was resistant at first because, thankfully, he is out of the habit of staying for long and having procedures done but afterward he did say that he felt better. They don’t really know what is causing the problem but they are doing some more cultures and we are cutting back on some of his preventative medicines and supplements and maybe this will help. We will go back for a recheck next Tuesday.

We are hoping to get Andrew to the beach next week to spend a week or so with his grandparents without us (or Sarah) there. He was so sad (and a little jealous) last summer when Sarah got to spend several weeks at the beach when he was in the hospital – and who could blame him. So, as he was crying and I was trying to explain why he had to have a stem cell transplant and Sarah had to go to the beach because there was no one here to take care of her I promised him that as soon as he had recovered enough he could go to the beach with just his granny and granddaddy. Dr. Reddy has given it the OK and hopefully we can work it out for next week. He is so excited and we are so happy to have gotten to this point. July on the stem cell unit seemed like a million miles from the beach but hopefully he will be there soon. Thanks for checking on Andrew. - Anne

As you can see from the above photo we are well underway with planning this year’s softball benefit and I wanted to take a minute to give you more of the details. Once again we are working with Samford University and the University of Alabama at Huntsville to put on a benefit softball game. Last year’s event raised over $12,000 for the UAB Pediatric Neuro-Oncology Program at Children’s Hospital for brain tumor research. Thank you all for your generous support. Many of you have already received a letter regarding the event and I am going to send out the flyer on e-mail as well. Please forward it to anyone you think might be interested. Also, if you are the parent of a brain tumor patient and would like to be involved in the event please contact me.

This year the Second Annual Knockin’ Cancer Out of the Ballpark benefit is scheduled for Sunday, October 22nd. Several other brain tumor patients and their families will be joining our efforts. The event last year was a wonderful family event and it promises to be bigger and better this year. The gates will open at 1:00 – there will be a Fun Zone for kids with the therapy dogs from the Hand-In-Paw organization, moon walk, face painting, games, give-aways, concessions, college mascots and more. All kids are invited to participate in the pre-game ceremony starting at 1:45. The game will start 2:00 and admission is free with a donation.

If you cannot attend the game but would like to make a donation: Make checks payable to Children’s Hospital and write “softball game” on the memo line. All donations are tax deductible and can be sent to:

Anne Long
2509 Shades Crest Rd.
Birmingham, AL 35216

Tuesday, September 26, 2006 4:33 PM CDT

Well, there hasn’t been too much going on since our last update. Andrew was given the OK to go without his mask outside as long as there are not too many people around – he has really enjoyed that. We have been playing more soccer and wiffel ball in the back yard. He has continued with all of his “home schooling” and a few more after school visits with Mrs. Cook. All of that has been great for him – it can be difficult to fill up the day when we are at home ALL of the time - not that I’m complaining it beats being at the hospital ALL of the time. He did have the more in depth lab work done and Dr. Reddy said that it looks good for where he is but we will still just have to wait and see as to when he could get back to school. I asked him the other day if he was ready to go back and he said “yes”. We had to go back to clinic today because he has had a little upset stomach for a few days. He has not run fever or really felt bad but he has not felt like eating much either. It will take a few days to get any results back but they did say he was starting to get a little dehydrated. So, we are working on eating and drinking a little more and will go back next Tuesday. We have been having a good bit of trouble with his hearing aids giving “feedback” which is annoying for all of us and makes him want to take them out. While we were at Children’s today we stopped by the Hearing Center and Miss Ericca made some adjustments. Hopefully this will improve things – his hearing aids really do help but only if they are in his ears! As always, thanks for checking on Andrew. -Anne

As you can see from the above photo we are well underway with planning this year’s softball benefit and I wanted to take a minute to give you more of the details. Once again we are working with Samford University and the University of Alabama at Huntsville to put on a benefit softball game. Last year’s event raised over $12,000 for the UAB Pediatric Neuro-Oncology Program at Children’s Hospital for brain tumor research. Thank you all for your generous support. Many of you have already received a letter regarding the event and I am going to send out the flyer on e-mail as well. Please forward it to anyone you think might be interested. Also, if you are the parent of a brain tumor patient and would like to be involved in the event please contact me.

This year the Second Annual Knockin’ Cancer Out of the Ballpark benefit is scheduled for Sunday, October 22nd. Several other brain tumor patients and their families will be joining our efforts. The event last year was a wonderful family event and it promises to be bigger and better this year. The gates will open at 1:00 – there will be a Fun Zone for kids with the therapy dogs from the Hand-In-Paw organization, moon walk, face painting, games, give-aways, concessions, college mascots and more. All kids are invited to participate in the pre-game ceremony starting at 1:45. The game will start 2:00 and admission is free with a donation.

If you cannot attend the game but would like to make a donation: Make checks payable to Children’s Hospital and write “softball game” on the memo line. All donations are tax deductible and can be sent to:

Anne Long
2509 Shades Crest Rd.
Birmingham, AL 35216

Thanks so much for your support.

Friday, September 15, 2006 9:50 PM CDT

As you can see from the above photo we are well underway with planning this year’s softball benefit and I wanted to take a minute to give you more of the details. Once again we are working with Samford University and the University of Alabama at Huntsville to put on a benefit softball game. Last year’s event raised over $12,000 for the UAB Pediatric Neuro-Oncology Program at Children’s Hospital for brain tumor research. Thank you all for your generous support. Many of you have already received a letter regarding the event and I am going to send out the flyer on e-mail as well. Please forward it to anyone you think might be interested. Also, if you are the parent of a brain tumor patient and would like to be involved in the event please contact me.

This year the Second Annual Knockin’ Cancer Out of the Ballpark benefit is scheduled for Sunday, October 22nd. Several other brain tumor patients and their families will be joining our efforts. The event last year was a wonderful family event and it promises to be bigger and better this year. The gates will open at 1:00 – there will be a Fun Zone for kids with the therapy dogs from the Hand-In-Paw organization, moon walk, face painting, games, give-aways, concessions, college mascots and more. All kids are invited to participate in the pre-game ceremony starting at 1:45. The game will start 2:00 and admission is free with a donation.

If you cannot attend the game but would like to make a donation: Make checks payable to Children’s Hospital and write “softball game” on the memo line. All donations are tax deductible and can be sent to:

Anne Long
2509 Shades Crest Rd.
Birmingham, AL 35216

Thanks so much for your support.

Since our good report last week we have been relaxing and not feeling the pressure of the MRI hanging over our heads. Andrew is continuing to feel better and have more stamina for playing and his school work each day. He has been to school twice to work with his teacher after school and he really seems to enjoy it – school work is a welcome change compared to being at the hospital. All of his teachers are wonderful – he has several including his regular teacher, home bound teacher and extra help with Mrs. Northcutt.

Andrew got hearing aids yesterday – it was a really long process but overall it went very well. I can’t say enough about all of the people at the hearing and speech center at Children’s – they have been wonderful in working with us to try come up with the best possible option to help Andrew hear better. As it turns out his hearing tested better today than it did last month so maybe the original hearing aid is most appropriate for him. However, since they had ordered new ones they had to return the original ones but since the new ear moulds were in they were able to send him home with loaner hearing aids. The difference was immediate and positive – he has been very cooperative with wearing them so far. He has spent much of Thursday talking about things that he has not been able to hear well in some time…”wow, that garage door sure is loud”…”the van door is pretty loud, too”…”mommy, you don’t have to talk that loud to me with my hearing aids in”. I guess it will take us all a little time to adjust.

As always, thanks for checking on Andrew. -Anne

Wednesday, September 6, 2006 6:18 PM CDT

The news is GOOD!!! It was a long day. We were using the new MRI machine at Children’s South and when we got there they said they were over an hour behind so we went home so the “food hog” could eat some more. When we got back we still had a short wait and then when I got to the MRI room and saw the brand new state-of-the-art machine I thought this might go quicker than normal…I was wrong. It took over two hours to run all the scans. We went home so “food hog” could eat again before we went down to Children’s. When we got to clinic and were waiting in our room we were trying to watch for anything like we’ve seen before when they have bad news…everybody was friendly and joking so maybe it’s good news or maybe they’re trying to take our mind off things…it was torture. While I took Andrew to get his vitals, Anne held one of the nurse practitioners at gun point and said “what’s the deal?” She said Dr. Reddy had looked at the scans and was very pleased. Couldn’t be totally sure what that meant but it better than not knowing anything. Dr. Reddy came in shortly and gave us the official word that there was no evidence of disease in the scans and she examined him and said he looked great. We can even cut down on the appetite stimulant because he weighed over 50 lbs. and he eats constantly! He gets a two week break from clinic and he’ll have scans done in another three months but for now we are excited about a break from all things medical even if it is for a short time.

We want to thank everyone who has been praying for Andrew and all of us during this difficult time. We could never express how much it means to us and we are so thankful to all of you.

-- Bruce and Anne

Monday, September 4, 2006 8:46 PM CDT

Andrew is doing great – he continues to have a great attitude and is more and more active each day. He has been going outside a little bit each day and kicking the soccer ball and hitting wiffle balls – it is great to see him doing so well. He has worked so hard to get better and he deserves a break from medical issues – hopefully he will get it. He had a good visit to stem cell clinic last Friday and said “good bye” and thanks to everyone there. Dr. Sande officially turned him back over to Dr. Reddy. They did say that he needs to come to the stem cell clinic to “wait” instead of waiting in Clinic 8 because they are still concerned with his immune system.

His MRI is Wednesday morning and then we see Dr. Reddy at 1:00. We will post something as soon as we can. Thanks to everyone for the encouragement and continued prayers for recovery and a clean MRI.

Anne

Wednesday, August 30, 2006 3:45 PM CDT

Happy 38th Birthday Anne!
Love, Bruce, Andrew, & Sarah

Tuesday, August 29, 2006 10:09 AM CDT

Andrew is getting better each day. I can’t believe I have been saying that for a month and he still has such a long way to go – but that’s OK. It has been great to see him in such a good mood – he has been laughing – a lot. He is enjoying feeling good and playing more. Over the weekend he got outside with Sarah and kicked a few soccer balls – he didn’t last long but we were just so happy that he wanted to get out. It was, of course, very hot outside and he had to have his mask on, but he did not complain. He has been very agreeable lately – maybe the 30 days in the hospital has made everything else seem like small potatoes to him – I know it has for me. On Sunday he and Sarah played in the sprinkler – Andrew in his regular clothes, shoes, hat and mask – he got soaked. While doing this and the soccer you could see how weak he still is – his leg had trouble holding him up for long and he fell a few times but did not seem to mind.

The school has provided a home bound teacher for Andrew – she will see him 3x/wk for an hour. She has already worked with him 3 days and he has really seemed to enjoy it. This has been a relief and a blessing for me. Andrew and I do a little “homework” together but I don’t think that I am cut out to be a home schooler – being Mom and nurse for the past two years has been plenty. Andrew’s teacher at East is coming to meet him today and he is very excited about that. I think that he will be happy to get back to school whenever that may be.

Andrew’s clinic appointment this week is not until Friday and if all his numbers continue to look good then Dr. Sande in stem cell may go ahead and turn us back over to Dr. Reddy. Thanks for all of the continue prayers for recovery and a good MRI report on Sept. 6th. Don’t forget to save the date for the softball benefit game (Sun., Oct. 22nd) - I will post more details as we have them. If you are a brain tumor patient or the parent of one and would like to be involved please contact me.

Thanks,

Anne

Wednesday, August 23, 2006 1:30 PM CDT

Andrew had his clinic appointment today and his doctors and nurses continue to be very pleased with his progress. His counts look great for where he is (day plus 37) the only thing they want him to do is eat a little more. He has lost about 2 lbs. since he was discharged but he has been holding steady the past week and a half. They want him to try more of the milkshakes and supplements to add some calories – hopefully that will help. The other big news from today was that Andrew got his central line taken out. It was a very short procedure and he was sedated, just like when he has gotten a spinal tap. He is so excited to be free from it and is looking forward to wrestling with his dad and getting a bath in a full tub of water – he is easy to please!

Our next big date will be two weeks from today (Sept. 6th) when Andrew has his first MRI since June 20th. You might remember that his June 20th MRI showed great improvement since his relapse in April but there was still cancer evident. The hope was that the stem cell transplant would take care of any remaining cancer but there is no guarantee. Please continue to pray for Andrew’s recovery from his transplant and please pray that the Sept. 6th MRI shows that his cancer is gone…. FOREVER!

Don’t forget, we are also in the planning stages of the Second Annual Knockin’ Cancer Out of the Ballpark benefit. Many of you attended and supported the event last year – it is a softball game between Samford University and the University of Alabama Huntsville. Two of my great friends – Beanie Ketcham and Les Stuedeman coach the teams and gave us the opportunity to have the benefit last year. We are planning for a bigger and better event this year with all proceeds going to brain tumor research at Children’s Hospital. Many of you also know James Howell who is battling a brain tumor as well – we have asked the Howell’s to join us this year along with some of the other brain tumor patients. The date is set for October 22nd and I will post more details as we have them.

Thanks for your continued prayers.

-Anne

Thursday, August 17, 2006 10:26 PM CDT

Yesterday we went to the Hearing and Speech Center at Children’s so that Andrew could be fitted with the hearing aids that were ordered for him last March. We knew that there had been a significant decrease in his hearing since then but we were still hopeful that they would work. As it turns out his hearing loss is so great that those hearing aids will not be able to do the job. Not surprisingly the more hearing loss you have the harder it is to find a hearing aid that can help you – the technology is good but it has its limits. They are going to order another hearing aid for Andrew that will be more appropriate but even with it his hearing will not be close to normal. They do feel that it will help him and hopefully this will improve things. The hearing issue is just one more thing to add to the list of things that will never be the same for Andrew. I feel like each one of these issues individually is not so bad but when you pile them all up… well, it is just a lot to ask him to deal with. Ever since Andrew was diagnosed I have never thought of things in terms fairness. The treatment was just something that we had to do and hopefully after all of the suffering there would be a cure for Andrew. All of the things that he has had to miss out on the past two years and all of the short term side effects (pain, fatigue, hair loss, etc.) never really bothered him or us that much. It is all of the long term, permanent problems that get to you and unfair doesn’t even come close to summing it up. With few exceptions, children that go through this pay such a high price in hopes of getting cured and as I tried to explain, for us, it hasn’t been all of the temporary (although 26 months isn’t feeling very temporary anymore) discomfort – we could do all of that over again – it wasn’t so hard, it’s the long term issues that are hardest to deal with and at the same time we are in a position that we only hope to get to deal with them.

On to happier news, Andrew’s clinic appointment went well today – his counts continue to be good. He has not needed any fluids – so he is eating and drinking enough and his weight has held steady since last week. His red count and platelets continue to improve and he has not needed blood or platelets in quite some time (thanks to all who donated – it is better to have too much than not enough). So, he does not have to go back to stem cell clinic until next Wednesday. On a related note – thanks to everyone at Bruce’s company, Imaging Business Machines – they had a blood drive today in Andrew’s honor and collected 25 pints of blood from 30 volunteers – great job!

We are also in the planning stages of the Second Annual Knockin’ Cancer Out of the Ball Park benefit. Many of you attended and supported the event last year – it is a softball game between Samford University and the University of Alabama Huntsville. Two of my great friends – Beanie Ketcham and Les Stuedeman coach the teams and gave us the opportunity to have the benefit last year. We are planning for a bigger and better event this year with all proceeds going to brain tumor research at Children’s Hospital. Many of you also know James Howell who is battling a brain tumor as well – we have asked the Howell’s to join us this year along with some of the other brain tumor patients. The date is set for October 22nd and I will post more details as we have them.

As always, thanks for checking on Andrew. -Anne

Monday, August 14, 2006 8:58 PM CDT

We had a good weekend – no big excitement – just hanging around the house. Andrew is slowly eating better – he tried a pancake, cheese toast and cooked carrots over the weekend. I think he likes the cheese toast best. We went to clinic this morning and they continue to be pleased with his overall progress. He has lost about a pound since he was discharged but we are working on that. He doesn’t have to go back to clinic until Thursday.

We have an appointment on Wednesday for Andrew to get his hearing aids. Many of you that have been following Andrew’s story for some time know that his hearing has been an issue for almost a year now. I won’t repeat the whole story of how we got to this point except to say that one of the drugs he received in his original course of treatment causes permanent hearing loss. He was scheduled to get hearing aids the week after we found out that he had relapsed – needless to say we did not make that appointment. One of the drugs he received in stem cell is in the same family and we knew that his hearing loss could be even worse. I think that Bruce and I both were surprised at how much worse his hearing has become. It is very difficult to communicate with Andrew unless you are right in his face and talking very loud. Often times if his doctor or nurse tries to ask him a question several times and he still does not know what they said he will look at me for help because he knows that I will talk loud enough or use words that are easier to hear. He is getting frustrated with it and it is not always possible to be right in his face. So, we are happy to have that appointment coming up soon and hopefully it will improve the situation.

Thanks for checking on Andrew – we appreciate all of the prayers.

-Anne

Saturday, August 12, 2006 0:13 AM CDT

Andrew has had a really good week – he is getting a little stronger and feeling a little better each day. He is still relatively weak and unsteady – he needs a little help getting up the stairs and getting out of the bath tub but overall he is improving. At his clinic appointment on Wednesday his doctor felt like he was doing so well that she gave him Thursday off – he was so excited. They have put some of the control/responsibility in Andrew’s hands with regard to letting him know that if he eats and drinks enough that he will not need to come to clinic as often. So far he has not needed any extra fluids and he is so proud of himself for doing so well and earning a day off. He has been very motivated to cooperate and do what is necessary to get better. His magnesium has been low and he is taking a supplement. Today at clinic it was still lower than they wanted it so they increased his dose. Andrew is taking all of his medicines without complaint but does not want to take any more than he has to so he asked the nurse practitioner what foods he could eat that have lots of magnesium in them. The NP gave us a list of high magnesium foods and Andrew picked out several that he thought he could eat more of including broccoli, green beans, peanuts and sunflower seeds.

Thursday was meet the teacher day for 1-3rd grade – it was tough to go without Andrew. I enjoyed seeing all of his friends and many of them asked about him…I just wish he could have been there too. Maybe he will get to go sooner rather than later. Mrs. Cook will be his teacher and I know he will love her. Sarah got to meet her teacher (Mrs. Patterson) on Friday and she is so excited to start school. Sarah had always wanted Andrew to walk her to her class when she started school and she asked him if he still would even though it will be a while until he goes, of course, he said “yes”.

I almost forgot to add that after the Friday appointment they said he could be off until Monday!

As always, thanks for checking on Andrew. -Anne

Tuesday, August 8, 2006 11:58 PM CDT

It is just so great to be home – I can’t tell you what a difference it has made in Andrew’s mood - he has laughed and smiled more today than he has in the past month. Being in the hospital for 30 days was difficult but I think that Andrew handled it as well as he possibly could – we are so proud of him for that. We had to be back at the stem cell clinic at 9 this morning to have his labs checked and see the doctor – they will keep him on a short leash for a while. He is eating a little better each day – he is enjoying Batman soup, Scooby Doo mac and cheese and little fortified milkshake tonight. His doctor and NP thought he looked great and did not need any fluids or blood/platelets. He may need fluids tomorrow but we are trying to drink enough to avoid that. Andrew really wants to get his central line out ASAP and Dr. Sande told him that is was up to him – if he will eat and drink enough so that he does not need fluids in clinic very often and he doesn’t mind getting stuck in his port then he can get it out very soon. Andrew said that getting stuck in his port does not hurt as long as he has magic cream so maybe we could get his central line out next week if all goes well – that would make both of us happy.

Tomorrow is a big day – Sarah is coming home from the beach and we will all be under one roof for the first time since June! She and Andrew have been talking on the phone and are very excited to see each other. We have our daily clinic appointment in the AM so maybe she will be home by the time we are done.

Bruce and I want to take time to thank all of the people near and far who have been praying for our family. We are so appreciative of all the encouraging messages as well as all of the meals, house cleaning, errands and help with Sarah that we have received since the beginning of our ordeal and especially since Andrew’s relapse. We could have not have made it this far without all of the wonderful people who have been there to help us. Andrew still has such a long way to go but it is such a relief to have gotten over this hurdle. Thanks to you all.

-Anne

P.S. New photos added.

Monday, August 7, 2006 1:48 PM CDT

Day Plus 21
WE ARE HOME!!! Andrew was very happy to get out and get home. This is a quote from Andrew "I miss everyone and I hope to have a play date soon. Love, Andrew". We'll update more later when we get all our stuff unpacked.

Day Plus 19
Andrew had a good day on Friday - he got up a couple of times to exercise. He played smashball with the PT and went out in the hall to use the Playstation. The child life therapist set it up for him and they use a device called an "eye toy" that goes with the Playstation. It is a small camera that videos Andrew and projects him into the game. He played knockout - a boxing game. He had an interactive boxing match with several cartoon characters on the screen and then he worked the heavy bag for a while. It is really funny to watch and an amazingly good workout for him. I was able to get some video of it and all the nurses cheering for him. The eating is progressing very slowly. He is trying but his mouth, esophagus and stomach are still very tender. He is drinking some but only eating a few bites of soup - I know that this is going to take time.

School starts back at the end of next week - it is bittersweet for us. We are excited about Sarah starting kindergarten but it will be some time until Andrew is even able to go. The very first day Andrew ever went to school he had to check in late because he had been to radiation that morning. He has done a remarkable job in so many ways but, of course, it has never been the experience that you want for your child because of everything else. Andrew is going to do first grade again – with him missing the last two months of last year and not knowing when he could start this year it seemed the only reasonable option. He has tried so hard to keep up but with all he has had to deal with it has been difficult. Andrew is not totally on board yet but he is going to be placed in a class from the beginning of the year and hopefully will feel a part of the class whenever he is able to go.

Hopefully we are still on track for coming home on Monday and possibly he would be able to have some visitors on a limited basis soon after that. I know that it would do him good to see some of his friends. He will have lots of restrictions for a while such as a low microbial diet and having to wear a mask if he leaves the house although I don't forsee us getting out much for some time. Trying to learn as much as possible about Andrew's condition and how the immune system works has been a challenge and trying to explain it is even more challenging. Andrew's blood counts are good considering the fact that he just had his transplant 19 days ago but his immune system is still very fragile. Andrew's ANC is about 3500 - there were times during his regular course of treatment that his ANC was around 500 to 1000 and he still went to school and it was probably less than 100 when he went swimming at his end of treatment party. The difference now is that even though the numbers are good the cells are immature and their ability to fight off any type of infection is very limited. When you think about the way that immunizations work - your immune system is exposed to a virus and then it builds up antibodies to fight it and you have immunity to future exposure. Because Andrew's immune system was wiped out all at once he has lost all of the immunity to different viruses, etc. that he had built up over his lifetime. He will have to have all of his immunizations repeated - probably in a few months. It can take 6 months to a year for his immune system to function properly but we are just happy to have made it this far.

Thanks again to everyone for all of the prayers.
-Anne

Wednesday, August 2, 2006 11:01 PM CDT

Day Plus 17
Another good day. Eating a little bit more and playing games in the hall to exercise. His voice is getting stronger and that came in handy tonight when he told the girl that came to make him get out of bed and get weighed after he had gotten all comfortable to "Come back tomorrow morning when I'm awake...Goodnight!"
Thanks for checking,
Bruce

Day Plus 16
I don't think Anne got much sleep on Tuesday night because Andrew had slept a good bit in the early evening and couldn't get to sleep. So he made up for it by sleeping alot on Wed. morning. In the afternoon, he was unhooked from his IV so he walked in the hall, colored a picture, played GameCube, and growled at a few therapists. When I got there after work he was in a good mood and we got his bath with no problems, played a couple of games, watched part of a movie, and he ate the "juice" out of a bowl of chicken noodle soup. Overall, another pretty good day and right now the doctors have us targeted at being discharged on Monday.

Thanks for checking.

-- Bruce

Tuesday, August 1, 2006 8:42 PM CDT

Day Plus 15
Andrew had another good day today. His GI issues seemed better today and he was a little more active. The OT came and worked with him for about 45 minutes - they did some activities sitting up in a chair and some standing as well. He played Gamecube and watched a movie and was generally in a good mood. His doctor and nurse practitioner started talking to him about what he needs to do to be able to go home. Those things include being able to take all of his medicine by mouth - he is doing well with ones he has now but some of the ones he is getting IV will have to be oral at home. He needs to be more active each day and build up his strength. He needs to start eating and drinking more - they started the appetite stimulant today and have started to decrease his IV nutrition. Last he needs to be willing to wear his mask anytime he is not at home or in the clinic. After discharge we have to come back to clinic each day to have counts checked - I'm not sure how long that lasts but I don't think we will be going many other places for a while.

Several people have inquired as to how it is going with the blood and platelet supply. Andrew has not needed blood in almost a week - he got platelets a few days ago and may need some tomorrow. The hospital has not had any trouble getting what he needs and we appreciate everyone who has donated. As for his near future needs he will probably need more of both so if you are still available and have time to go that would be great and if Andrew does not need it the Red Cross would appreciate it and will make sure it is put to good use.

Andrew is feeling better each day and is very motivated to get home so hopefully it will not be too much longer. Thanks for checking. -Anne

New photo added also.

Monday, July 31, 2006 9:26 PM CDT

Day Plus 14
Andrew had another good day today - not necessarily any better than yesterday but much improved over last week. The PT came today and Andrew got out of bed and walked a little and then the PT assistant played a little badminton with him. Andrew calls it smash ball - he used to play it in the hall on 4 Tower - you toss him the birdie and he smashes it back at you. He hit the assistant between the eyes and this got a pretty big laugh out of Andrew.

His GI issues are about like yesterday - if they do not continue to improve he will likely have the endoscopy later this week.

The progress is slow but I think we are making it. Thanks for all of the continued prayers. -Anne

Sunday, July 30, 2006 10:11 PM CDT

Day Plus 13
Andrew had a better day today! He slept a little better last night (Sat) and was more active today than he has been in over a week. He and Bruce played Yahtzee this morning, he played Gamecube several times and he watched two movies. I came to relieve Bruce around lunch and Sarah came with me - she is not allowed on the unit because she is under 6 but they said that she could come to the door of the unit and Andrew could walk to meet her there if he wore a mask. They have not seen each other since July 4th and have been asking about each other alot. They said "hi" and then in his sweetest voice Andrew said "I want a hug" - yes, I cried. That was also the most Andrew had walked in some time and the visit seemed to do him good.

The GI issues were also improved today so after much discussion we have decided to hold off on the endoscopy which was scheduled for Monday AM. All procedures carry some risk and more so if your immune system is compromised. We may have to end up doing it anyway but we were just not comfortable doing it if it was not completely necessary. So, like everything we will just take it one day at a time.

As always, thanks for checking on Andrew. -Anne

Saturday, July 29, 2006 10:01 PM CDT

Day Plus 12
Well, there were no real changes today - Andrew's GI problems are not any better and maybe a little worse. The GI specialist stopped by for a few minutes to talk with us. He and Andrew's stem cell physician feel that this is something that can be resolved if we can just get to the cause. Andrew is scheduled for and endoscopy on Monday and hopefully that will give us some answers.

He did get up once today and walked to the door of his room and back to the bed - that is about all he can do right now. His mucositis is a little better but his lips are in bad shape and scabbed over and his throat is raw and he has developed laryngitis over the past few days. He has a hard time not picking at his lips - tonight he made his lip bleed and we were having to hold an ice compress over it to try to stop it from bleeding and he looked up and in his pitiful little voice said "I want some platelets". He got the platelets right after his bath.

Thanks to everyone who has donated platelets/blood and to everyone for all of the prayers. -Anne

Friday, July 28, 2006 9:48 PM CDT

Day Plus 11
Andrew's GI issues remain unresolved and we are getting tired and frustrated. His counts are a little better today so he has engrafted which is the goal but it is hard to see him still feeling so bad. We have talked with his doctor who we feel is being very thorough - she has consulted with a GI specialist and they have done cultures for every bacteria, fungus and virus imaginable and none have been positive yet. He is still on a variety of medicines but unless they get more information they do not have anything to base any changes on. Their gut feeling is that he has a bacterial infection of some kind but they cannot nail down which one. If he has not improved by Monday they will do an endoscopy to "look around" and get some tissue to biopsy. His mouth and skin are somewhat improved today so at least that is a little less to worry about.

Please pray for answers to the GI issues and for Andrew to feel better soon. Thanks for checking. -Anne

Thursday, July 27, 2006 10:04 PM CDT

Day Plus 10
Well, Wednesday night was pretty tough and today was not much better for most of the day. Andrew's counts continue to climb (white 5250;ANC 3832) but we are not seeing the improvement in him that we would have expected by now. His itching and mouth were a little better today but his lower GI issues have not improved at all. His doctor is not sure exactly what the problem is and why it is persisting but they seem to be checking everything imaginable and will continue to do so tomorrow. I did manage to get him to sit up in a chair for about 45 minutes today and that was a major accomplishment. He has seemed a little better this evening - watching Bruce play Gamecube and giving him LOTS of advice as to what to do. He has also had his bath and even joked with us and his nurse a little.

As always, thanks for checking on Andrew. -Anne

Wednesday, July 26, 2006 9:56 PM CDT

Day Plus 9
Well, Andrew's counts continue to climb but today I did not see much change in his condition. His white count this AM was 2660 and his ANC was 1835 which is great for day plus 9. However, he continues to have bad mucositis in his mouth, his skin is still a mess and very itchy and his diarrhea is still pretty bad. His doctor and nurses say that it is time to push him a little to get up and be a little more active. It sounds good on paper but with all of the itching and moderate to severe pain, he is still getting several medicines which induce sleep and I don't have the energy or the meaness that it would take to really force the issue. Maybe tomorrow.

Thanks again to everyone for all of the prayers and encouragement. It has been a great comfort to us. -Anne

Tuesday, July 25, 2006 8:51 AM CDT

Day Plus 8 - PM
More good news! They checked Andrew's counts again this afternoon thinking that he might need blood and platelets which he did but it also showed that his white count continues to climb. His white count was 1270 and his ANC was 762 - WOW! We're trying not to get too excited knowing that it could still be up and down some but it appears that he is on his way up.

He still does not feel great and his mouth is in really bad shape but he is enjoying the grape popsicles - I think he had 3 or 4 today. Other than that he slept most of the day. Now that his counts seem to be on the way up hopefully he will start to feel better soon.

Day Plus 8
We got some more good news this AM and Andrew is asleep so I thought I would share. His white count is over 400 today and he slept better last night. It wasn't great sleeping, but better. At 2AM he thought it would be a good idea for me to get him a popsicle...and cut it up into small pieces - not so easy to get the pieces just the size he wanted. About the counts - they could still go down some but hopefully we are headed in the right direction and he will start feeling better in the next day or two. They do not consider you engrafted until you have 3 straight days with an ANC of over 500. ANC is the active neutrofil count which is a more specific breakdown of the white cells and gives you an idea of the number of mature fighting cells that you have. His ANC today is 215 today. Thanks for checking on Andrew - will probably update again at the end of the day. -Anne

Monday, July 24, 2006 10:38 PM CDT

Day Plus 7
Last night was another difficult night - there was no sleeping - at all. Andrew's mucositis is still really bad and he needs his mouth suctioned out about every 5 to 8 minutes. His lips, tongue and cheeks are so swollen and raw that he is having trouble talking. His skin is still very sensitive and itchy and it is starting to peel from the burn and this makes it itch worse.

The doctor saw him this morning and still thinks that he is doing well considering the circumstances. She also said that his white count is up to 210 which she would not have thougth that much about except for the fact the she saw some monocytes in the count. They are a more mature white cell and maybe a sign that he is starting to engraft although she said not to get too excited until we see the counts for tomorrow. If he is up some more tomorrow then she thinks that he might be engrafting but his count could be lower tomorrow as well. Sometimes the counts go up and down in these lower numbers before they really start to engraft.

After our long night I was able to get by on caffeine until Bruce relieved me at about 3 so I could go home for a nap . When I left Andrew was still feeling pretty bad and certainly not doing much of anything. When I returned at 7 Andrew was up playing Gamecube with Bruce and had also walked to the door and back with the PT, played 2 games of UNO with Ms. Angela, and eaten a whole popsicle! I was amazed and decided that I should go home for more naps.

We are so appreciative of all the support we are receiving in the form of prayers, encouragement, food, help with Sarah and everything else. We love you all. - Anne

Sunday, July 23, 2006 11:43 PM CDT

Day Plus 6
Well Sat. night didn't go much better. I think Andrew can sense when ever I lie down and am just about to fall asleep...I tested this theory at some point during the night by standing at the window and watching the rain for a few minutes and he didn't make a sound...lay down and he made a sound and I'm up with the suction thingy. Oh well, at least the British Open was on to watch early in the morning.
Anne came down late in the morning and of course by then he was sleeping real good. The doctor came by and said overall she thought he was doing very well. She felt like maybe in 3-5 days he might start to improve. Of course, after she left he started having more pain and complaining about how bad his mouth hurts. I went home for awhile and when I got back to the hospital Sunday evening he was feeling pretty bad. He had got another unit of platelets while I was gone. I did talk him into playing a little GameCube to try to distract him from the pain and he played for awhile and then he got tired and said I could keep playing and he did have enough strength to keep telling me how to play even with his pitiful little voice. He'd had alot more diarrhea and when we finally got him up to do his bath he was so weak and shaky. It was a struggle and when we got him back in bed to take his evening meds he got sick after taking part of one of them. All that wore him out and he was sleeping when I left.
Thanks for checking on us. We're tired but surviving.
-- Bruce

Saturday, July 22, 2006 9:42 PM CDT

Day Plus 5
I took over for the weekend shift to give Anne a much needed break from the past week. I believe Anne mentioned something about the itching in her last update. The doctor's have said it could be a number of things causing it and they decided to try a different drug to relax him which in medical terms means it will make you drunk, loopy, and eventually sleep alot. That worked pretty good until about 1:30 am when he had alot of diarrhea problems which caused me to wish I had about 8 arms to be able to reach important things. That went on till something like 3 am and at some point he got another dose of the drunk/sleep medicine (I think it has a medical name but that's what I call it). Then he went into a 3-4 hour phase of "I'm going to make a noise every 1-2 minutes that is going to make you have to get up and check on me". I buzzed the nurse and requested a dose of the drunk/sleep medicine for me. I finally gave up laying down at all at 6 am and pulled a chair up to his bed and sat there so I could hand him the suction thingy that he uses to keep his mouth clear and that he had been needed ever couple of minutes for the past 3 hours....and now, he goes to sleep. Now I'm awake and lucky for me the British Open coverage started then so I did have something to watch.
Dr. Sande came by in the afternoon and said everything was going well and his CT scan was good and his counts were where they wanted them to be. He did get platelets Friday afternoon so thanks again to everyone who has donated blood/platelets. He's had 1 unit of blood and 1 unit of platelets this week.
Sarah returned today from her week in Huntsville. My sister came by the hospital with her and I ran down to see her for a couple of minutes before she went on to see Anne at home. She's been having a great time at the beach and at Huntsville but we've missed her and all her silly voices. Sarah loves her brother and I think she really wishes she could come to the room. Now I'm not sure if she really needs to see Andrew because she has obviously seen the picture of Andrew standing next to his prize calendar and asked me "so exactly what kind of prizes has he been getting out of that thing?" There just might be an ulterior motive.
Well, it's Saturday night and I'm back on duty. Anne did relieve me for a few hours so I could see Sarah and take a short nap before returning. We got him showered and his evening meds in him and mouth care done and he is sleeping again and I'm hoping for a little less activity tonight.
Thanks again to everyone.
--Bruce

Friday, July 21, 2006 9:09 PM CDT

Day Plus 4
ITCHY! ITCHY! ITCHY!!!!!!! Andrew is very itchy. It has been a long day with lots going on but Andrew's skin has progressively gotten worse over the past day or two but tonight he has reached an all new level of discomfort. He looks so pitiful - his skin on his torso looks very burned and has some blisters. His legs have a bad rash and it has all been getting worse. One of his chemo meds is known to cause burns which is why we did the diligent bathing 3x/day for 4 days but it appears to have burned him anyway. The doctors think that he may also be having a reaction to one of his medications - possibly an antibotic and or the morphine. If it is the morphine that is really too bad because it is one of things that is helping him tolerate the pain. They do have other options for pain relief - morphine is usually just the best. We have several lotion type products to use but his skin is so sensitive that he just cries as we put it on. We are going to try different pain medicine next time he needs it and Bruce is trying to take his mind off of it with a Lego project right now.

He is still running fever but none of the cultures have grown anything so far. They decided to do a CT of his sinuses and abdomen to make sure they were not missing an infection there. His large intestine is swollen which may be from the chemo or an infection or from all of the diarrhea or vice versa it is hard to know. So, they continue to treat with antibiotics and antifungal meds.

I'm sure we have several more difficult days ahead. Right now, I feel like if he could just quit itching everything would be more tolerable.

Thanks again to everyone. -Anne

Thursday, July 20, 2006 8:05 PM CDT

Day Plus 3
I'm starting to sound like a broken record but Andrew is a feeling little worse today and I still think it is going to get worse before it gets better. His mucositis is worse and starting to cause more pain in his mouth and esophogus. It is painful to swallow - especially his medicine which burns as it goes down. They decided to go ahead and give him some morphine to help with the pain - and it has helped.

He is getting some red blood right now and will likely need platelets tomorrow. He has continued to run fever on and off and they are doing some more cultures and may add/change his antibiotics.

Andrew's disposition is still very sweet - he really likes for me to rub his back to make him feel better.

Thanks again to everyone. -Anne

Wednesday, July 19, 2006 9:57 PM CDT

Day Plus 2
Well, kind of like yesterday, everything is just a little worse today. We know that Andrew is going to have to hit bottom before he starts to come back up - he just has not hit bottom yet. We seem to have a few hard hours at a time each day but at least the whole day was not bad and we are thankful for that. Last night his temp. was steadily going higher so at 4AM we had to have his old port accessed and a blood sample drawn to see if there was an infection there. It takes several days until they consider a culture negative and they had already started him on antibiotics. Surprisingly he handled that whole event pretty well. The morning was a little rough but finally the Tylenol started to work and he slept for a few hours. He had felt so bad in the morning that I was really surprised that he perked up the afternoon and spent some time talking to the various therapists who are part of the team. After that he watched TV for about an hour and as the show was going off he was singing along with the theme song. After that he slept some more then got sick and then we had to do the whole bath, dressing change and take medicine. All of that is usually a fiasco but we got through it and Andrew is now watching a Snoopy DVD.

Thanks to everyone who continues to check on us, pray for us and leave encouraging messages. - Anne

Tuesday, July 18, 2006 9:33 PM CDT

Day plus 1
Andrew is hanging in there - everything (mouth sores, vomiting, diarrhea) is a little worse today, as expected. Despite all of that today was not too bad - Andrew slept a good deal. I keep saying that I wish we could just sleep through the whole thing and they could wake us up in a couple of weeks and maybe it would be over. I know that is not going to happen. He is starting to run a small (100.5) fever so they are starting the process of doing some cultures to see if he has a specific infection. Usually, they go ahead with antibiotics because they can't wait to see if the cultures grow.

We still have a bath to do and Andrew is really tired and sleeping right now so it may be a little difficult.

Thanks again to everyone who continues to pray for Andrew. -Anne

Monday, July 17, 2006 5:21 PM CDT

Day 0 - Transplant Day
Today was the big/not so big day - it was a big day because Andrew got his stem cells back but not so big because the procedure is realtively simple. It is very similar to getting a blood transfusion. They hung a bag that contained Andrew's stem cells and they were infused into to him just like blood or chemo meds. About 20 minutes into the procedure Andrew said he was having trouble breathing - that will fill up the room in a hurry. He did not seem to be in too much distress and his vital signs were still OK - so they stopped the infusion for a few minutes and then started back slowly. The whole procedure took about an hour. He was itching a good deal afterward and was very agitated - after some phenergren (sp?) he slept a little.

We know that it is going to worse before it gets better. His mouth sores are a little worse today and we have pretty much given up on him eating - he can't keep anything down. He is having pretty bad diarrhea and the trips to the bathroom with the large IV pole and what feels like 10 tubes hanging off of him or coming out of him are about to wear both of us out. He tried to sit on the side of the bed with me and play Gamecube but he was just too tired. He is resting now.

Bruce is going to post some pictures of the transplant procedure when he gets home tonight so check back for those.

Thanks again for all of the prayers, blood, platelets, food, messages and concern. We appreciate them all. -Anne

Sunday, July 16, 2006 11:29 AM CDT

Day -1
Well, as we expected things are starting to get rough. They have not given us Andrew's counts for today but I suspect they are close to 0. He started having some double vision on Friday night - this is annoying and makes it hard to play Gamecube or "catch". The doctors are not sure why he is having this but my guess is that it is likely a side effect of all the chemo. He has not had double vision since before his surgery to remove the initial tumor and since the cancer was diffuse when it returned I cannot imagine that it is related to the double vision. He has barely had anything to eat in several days. He tried to eat some plain pasta last night but got sick after 2 bites. They are probably going to start TPN today - this is IV nutrition. He also has some small sores in his mouth - despite all of our diligent mouth care this usually happens anyway. It is called mucositis and can be very painful if it gets worse.

On the bright side his disposition is very sweet right now. He has lots of love and hugs for us and sweet things to say. He talked on the phone with Sarah last night and asked if she was having a good time. When he got off the phone he said "Sarah said she missed me and I miss her too." Right now he sitting up playing Gamecube - he earned a new Power Rangers Dinothunder game last night and wanted to try it out this morning.

Thanks to everyone for the prayers, messages and support.
-Anne

Friday, July 14, 2006 10:11 PM CDT

Day -3
Today was Andrew's last day of chemo - it has slowly but surely been bringing him down. His counts are definitely on the way down and his energy level is considerably lower. Sometimes when Andrew does not want to cooperate it is more the argumentative and stubborn side of him (we call that Mr. Grumpy) but today it has been that he is just so tired that he is having trouble getting going to do things. I can tell that he is not trying to be difficult - it's just that he so physically tired and the medicine (6 straight days of high dose chemo) is making him feel bad - that he is having a hard time making his body get up and go. He got sick a couple of time today - but not too bad. Mainly he just wanted to sleep. He is still doing well with his mouth care and 3x/day showers.

Bruce is staying with him tonight and I will enjoy a night at home. Sat/Sun. are rest and then Monday is transplant day.

Thanks for all of the prayers. -Anne

Thursday, July 13, 2006 9:11 PM CDT

Day -4
It has been another pretty good day for Andrew - he got sick once this morning but has been OK since then. He has not eaten very well for the past two days and I can tell the medicine is starting to effect his energy level. He is still feeling well enough to get out of his room - he went down the hall with one of the volunteers (very cute, sweet college girl - that helps!) this morning and played cards with her for about 45 minutes. He also worked with the OT and did all of his bathing and mouth care. It was almost 2PM before he even had a chance to play Gamecube. Andrew is really enjoying his calendar - all of the charts and stickers are really helping to motivate him. Thanks again to everyone who contributed prizes for him. Hopefully this will continue to motivate him even when the going gets tougher.

Tomorrow will be his 6th and final day of chemo then he will have Sat/Sun. to "rest" before his transplant on Monday.

Thanks to everyone who has given blood/platelets - we appreciate you all. Thanks for checking on Andrew.

Anne

Wednesday, July 12, 2006 10:43 PM CDT

Day -5
Overall Andrew had another really good day today - he got the two different chemo medicines this moring and felt pretty good most of the day. He got up and went out to play UNO with a volunteer in the morning, lots of mouth care and a mid-day bath kept us busy. He did not eat as well today and was pretty tired by the evening. He did get sick at about 9PM and we still had another bath to take, a dressing change, and mouth care to do. He was so tired that he did not want to do any of it and I don't blame him I didn't want to do any of it either. It is really hard to have to make him do things when he is so tired and the medicine is starting to make him feel bad - but we don't have any choice. A few "sticker" incentives helped us get through it all and he did seem to feel better by the time we were finished - or maybe it was just the fact that we were finished. He is sleeping now but we have to get up at 4AM for another bath and dressing change - I am fully expecting that will be difficult - I will try offering double stickers.

Several people have asked how Sarah is doing and overall I think that she is handling all of this pretty well. Although, sadly, since she was only 3 1/2 when Andrew was diagnosed I don't think that she remembers the normal we had before. I will give a quick run down of her summer activities and no one will worry about whether or not she is having fun. She has spent 2 weeks at the beach with her Granny and Granddaddy (part of that with us as well), she went to camp Briarwood for a week, Creative Kids Art camp for a week (and few extra days), she has managed to fit in several play dates when she has been home and tonight she headed to what we call "Camp Huntsville". She is going to spend a week with her Grandmom, Aunts, Uncle and cousins in Huntsville. If anything she is a little "overworked" with all of the activity. She has spent the last 3 days here so Bruce and I have both been able to spend some time with her and I'm sure she will be a little homesick by next week.

As always, thanks for all of the prayers, cards and well wishes for Andrew and our family. -Anne

Tuesday, July 11, 2006 10:32 PM CDT

Day -6
Andrew had another good day today - same medicine as sun./mon. He got up and out a couple of times today. He played a little soccer in the hall with another boy who is also being treated for a brain tumor. I think that it was good for both of them - they exercise much more when it is a game as opposed to having to walk a certain number of laps around the nurses station. They decided that you got extra points for hitting each other's IV pole and double points if you got one of the nurses who was walking by - of course all in fun. The nurses here are all wonderful and very encouraging.

Andrew will start two different chemo medicines tomorrow - one he has had before and one that he has not. The new medicine is excreted through the skin and can cause burns so Andrew will have to have a bath/shower 3 times a day for the next 5 days - we are really looking forward to that. I guess it will keep us busy. If he still feels as well as he has today it should not be too bad but if the medicine makes him sick it will be a challenge.

Thanks for all of the prayers and messages - Andrew enjoys having me read them to him. - Anne

Monday, July 10, 2006 9:34 PM CDT

Day -7
Andrew has had another good day - he got more chemo but it has not had too much of an effect on how he feels yet. He is getting a drug called carboplatin - he has never had that before. He got it yesterday, today and will get more tomorrow. The way that they schedule the transplant is to count down to transplant day with the chemo days - so today is day -7. His transplant will be one week from today and is called "day 0" and then the days count up from there - day plus 1, day plus 2, etc. Thanks to Ashley Thompson and Lee Carol Meads who made him a prize calendar that is numbered in the same fashion. At the end of each day he gets the prize in pocket for the day - he thinks that it is really cool and it is a good visual way to motivate him. Bruce is going to post a picture of it tonight. Many thanks as well to all of the people who have donated prizes for it.

We are pleased that Andrew has felt well through the first two days but there is such a long way to go. After 6 days of high dose chemo his counts will all be at 0 and it will be impossible to avoid many of the unpleasant side effects that will follow. So the most difficult days are usually after the chemo and before the stem cells start to reproduce. It usually takes 12 to 14 days for the stem cells to start reproducing - this is called engraftment. During this time we just try to keep him from getting an infection and try to keep him comfortable.

Andrew is enjoying a movie right now and then we will do his mouth care and go to bed. If you are interested in donating blood or platelets please see the journal entry from Friday, June 30th. Thanks again to everyone for their prayers and concern for Andrew. - Anne

Monday, July 10, 2006 0:58 AM CDT

Day -8 (Sunday)
Andrew got his first dose of chemo on Sunday and he handled it great. He never felt too bad and played alot of GameCube and took a short walk around the floor. The room on the 6th floor is a big one and all the doctors and nurses are taking great care of all of us.

Well, since we are here and getting started, I thought I would give a brief explanation of what a stem cell transplant is. There is really no magic to a stem cell transplant and the way I explain it is that it is a way for Andrew to receive more chemotherapy than he has ever received before. This is done in the hopes that there is some threshold to his cancer and some amount of chemo that will finally eradicate it for good. Along with killing cancer cells, all chemo has a negative effect on the bone marrow which is where stem cells are produced. Stem cells are the immature cells that grow up to be red blood cells, white blood cells and platelets. So if you give a person enough chemo you will wipe out all of their marrow/stem cells and they will not be able to recover. For this reason during regular chemo the amounts given have an effect on all of your blood counts but never to the point of completely wiping out all of your marrow/stem cells. In many cases these doses of chemo are enough to eradicate the cancer and it does not return – this has not been the case for Andrew. In a stem cell transplant some kids receive their own cells which were harvested prior to treatment – this is the case with Andrew and some kids (due to the type of their cancer) receive stem cells from a donor. The stem cells are returned to the patient after the high dose chemo is given so that the patient will be able to recover. It takes time for these cells to begin to function and to produce more cells. In either case it is a difficult process and the kids are so vulnerable to any type of infection during the period after the chemo has wiped out their immune system and before the stem cells which they are given back begin to reproduce.

Since Andrew’s cancer had returned but did seem sensitive to chemo based on his response to the two rounds of high dose chemo he received it was decided that a stem cell transplant was the last option (with the exception of experimental drugs) that might work. A stem cell transplant is not a definite “cure” and many kids’ cancer returns even after a stem cell transplant. We are hoping and praying that it will be a cure for Andrew.

If you are interested in giving blood or platelets for Andrew please see the journal entry dated Friday, June 30th. As always, thanks for checking on Andrew.

Anne

Friday, July 7, 2006 8:48 AM CDT

Our beach trip was really great – the kids enjoyed spending time with their Granny and Granddaddy as well as Uncle Buzzy and Aunt Ellen and the highlight was having several days to play with their cousins, Clarke, Lyle and Len. They always have such a great time playing together – the 5 cousins’ ages range between 4 and 7 so they are really close and always play well together. The weather was perfect and the water was clear and great for swimming and finding shells. We went to the beach each day by 10 and stayed for 2 or 3 hours and then went back again in the evening. Andrew still took a few naps but he felt much better this trip than last and really played hard and swam a lot. Andrew’s friend Conner was also at the beach so he came and played with Andrew one day and they really enjoyed that. The other beach highlight was seeing a family of Manatee swimming about 20 yards out in the Gulf – a rare sighting that we all enjoyed. We left the beach the afternoon of the 4th and arrived home in time to enjoy the fireworks on Red Mountain. Andrew said they were only a little better than the display that his dad and Mr. Billy put on at the beach – fortunately there were no arrests for shooting illegal fireworks at Blue Mtn. Bruce did update the photos with some from our latest trip.

Back to reality – yesterday was a pretty long day at the hospital. We arrived at 8am for Andrew’s central line placement – that went relatively well. After 5 surgeries Andrew is a pro and does not get upset about leaving us or what is about to happen. There was, however, a short appearance by Mr. Grumpy in recovery (and who could blame him) – he was annoyed by the IV in his hand, the tape on his abdomen, his chapped lips and the fact that we were at the hospital – but other than that everything was fine and we were able to leave by 12:30. Unfortunately, we had to be back by 2 to meet with Dr. Sande to go over the final plans for the stem cell transplant and sign consent. We also got some education about taking care of the central line at home - which I only have to do for 1 ½ days until we are admitted on Saturday. Finally, we were home by 5.

Thanks again to everyone who has or is planning to donating blood or platelets for Andrew (see journal history Friday, June 30th for details about directed donations) we really appreciate your efforts. Thanks also for all of the continued prayers and support for our family – we know that the next step will be the hardest yet. We will continue to rely on God’s love and all of the people who are supporting us to get through the next step. - Anne

Friday, June 30, 2006 9:21 AM CDT

Just a quick update before we head to the beach – Andrew has completed all of his pre-admission testing and it looks like everything is fine. He will have surgery on Thursday the 6th for his central line placement and then he will be admitted to the stem cell unit on Saturday the 8th. They estimate that he will be in the hospital for 4-6 weeks but that is really just a guess. If you give blood or platelets for Andrew please e-mail us or leave a note in the guestbook so we can say “thanks” when we see you. As always, thanks for all of the prayers for Andrew and our family. -Anne


DIRECTED DONATIONS FOR ANDREW

Blood and platelet donations can be made for Andrew starting on Friday, July 7th. If you are either O positive or O- and would like to donate either blood or platelets for Andrew we would appreciate it very much. Hopefully there would be enough blood and platelets in the bank for Andrew even if he did not have any directed donations but the way we look at it is that anyone who gives for Andrew (especially if they are not a regular donor) is helping to keep more of the stock in the bank for others. Andrew will likely need LOTS of blood and platelets during his stem cell transplant and possibly for some time after he is discharged. It is likely that he will need more platelets – there are two issues with platelets: 1) they have a very short shelf life – only about 2 days after they are processed. 2) it takes longer to give platelets – about 2 hours. If you have the time to give platelets that would be great but giving blood is also much appreciated.

Thanks to our friend Kathleen Lawrence who offered to help us with scheduling – but after talking with the Red Cross again they will be able to help spread out the donors so that none of the platelets are wasted.

To schedule a directed donation:

-Call Red Cross at 1-888-905-3344

-Tell them that you would like to make a directed donation of either blood or platelets for Andrew Long

-They should be able to see if someone else is already scheduled to give platelets (blood does not matter since it has a longer shelf life) for him on that day but you might want to ask to be sure.

-There are limited appointment times available for giving platelets so you may want to call for the appointment as soon as possible.

-Andrew will likely need platelets and blood even after he is discharged so we don’t need everyone to give right now - please consider giving in mid or late July or early August.

Thanks in advance to all who are able to help – even if you are not the same type as Andrew please consider giving – there are so many others who would appreciate it.

Anne

Tuesday, June 27, 2006 4:54 PM CDT

Directed Donations for Andrew

Blood and platelet donations can be made for Andrew starting on Friday, July 7th. If you are either O positive or O- and would like to donate either blood or platelets for Andrew we would appreciate it very much. Hopefully there would be enough blood and platelets in the bank for Andrew even if he did not have any directed donations but the way we look at it is that anyone who gives for Andrew (especially if they are not a regular donor) is helping to keep more of the stock in the bank for others. Andrew will likely need LOTS of blood and platelets during his stem cell transplant and possibly for some time after he is discharged. It is likely that he will need more platelets – there are two issues with platelets: 1) they have a very short shelf life – only about 2 days after they are processed. 2) it takes longer to give platelets – about 2 hours. If you have the time to give platelets that would be great but giving blood is also much appreciated.

Thanks to our friend Kathleen Lawrence who offered to help us with scheduling – but after talking with the Red Cross again they will be able to help spread out the donors so that none of the platelets are wasted.

To schedule a directed donation:

-Call Red Cross at 1-888-905-3344

-Tell them that you would like to make a directed donation of either blood or platelets for Andrew Long

-They should be able to see if someone else is already scheduled to give platelets (blood does not matter since it has a longer shelf life) for him on that day but you might want to ask to be sure.

-There are limited appointment times available for giving platelets so you may want to call for the appointment as soon as possible.

-Andrew may need blood and platelets even after he is discharged so we don't need everyone to give right now. You may want to consider giving in mid-July or at the end of July or early August.

Thanks in advance to all who are able to help – even if you are not the same type as Andrew please consider giving – there are so many others who would appreciate it.

Anne

Monday, June 26, 2006 4:44 PM CDT

We have received our schedule for the stem cell transplant and all of the testing that needs to be completed beforehand. We spent the morning at the hospital having labs drawn, an ultrasound of Andrew’s heart and an EKG – nothing too difficult – it just took all morning. Andrew has tests scheduled for Tuesday and Wednesday morning and then we are free until July 6th – this will give us a chance for another quick trip to the beach. After we get back he will have his central line placed on Thursday the 6th – this is an outpatient surgery procedure - then he is scheduled for admission to the stem cell unit on Saturday the 8th. It is scary but we are ready to get going.

We have received so many e-mails and messages from people who are willing to donate blood or platelets for Andrew – we are so grateful to you all. Andrew is O so he can have both O and O- blood and platelets. We are working on a schedule that will help spread out the donors so that hopefully we do not have too many at one time and not enough at another. I mentioned in an earlier posting that blood and platelets both have a limited shelf life – this is much shorter with platelets – usually only 2 days after they have been processed. For this reason it is important that we try to spread the donors out so that nothing is wasted. On this note I will also mention that Andrew will most likely need more platelets than red blood. It takes about two hours to give platelets and you do have to get stuck in both arms – but if you have the time and you are tough enough we would really appreciate it. Kathleen Lawrence is going to be helping us with the scheduling and I will post details about how to get signed up and how to make an appointment hopefully by tomorrow. Thanks again to everyone who has expressed interest in donating.

Andrew continues to feel a little better each day and we are looking forward to enjoying a little more beach time before the 8th.

Thanks for checking on Andrew,

Anne

Thursday, June 22, 2006 9:42 AM CDT

Our appointment yesterday went well – Andrew was in a good mood and I think Dr. Reddy and the rest of his treatment team enjoy seeing him laugh and smile – especially in comparison to Mr. Grumpy. He was not scheduled for any medicine so he just had his labs drawn and got checked out by Dr. Reddy. She thinks that he looks great – the only issue is that his white count is still low. He is OK to be “out” and see friends but his white count needs to come up before he can go to stem cell. So, we don’t have a date for stem cell but Dr. Reddy thinks that it will be in the next week or two. Bruce and I got to look at his MRI compared to the one from April and we could certainly see the improvement. The spine is almost clear and the tumor in the brain is still evident but is much smaller. As she said on Tuesday it is about as good a response as we could expect after two rounds of chemo.

With regard to the stem cell transplant we do know that Andrew will need lots of blood products - red blood cells and platelets. Neither Bruce nor I are the right blood type (yes, that is possible) so if you are O+ and willing to donate for Andrew we would be grateful. And even if you are not the right type and feel inspired it is a wonderful thing to do – there are so many others (kids and adults) who would appreciate your time and effort. When we have a firm date for stem cell we will post more information about donating – blood and platelets do have a limited shelf life so we don’t want to get started too early.

On a celebratory note – HAPPY 40TH BIRTHDAY, BRUCE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He doesn’t look a day over 38 does he?? We plan to celebrate with swimming and pizza tonight – although I think Bruce got his present on Tuesday.

Thanks again to everyone for their prayers and concern.

Anne

Tuesday, June 20, 2006 10:38 AM CDT

We have good news to report – we just talked with Dr. Reddy and she said that Andrew has had a very, very good response to chemotherapy. She did not use a percentage or a number but she feels that most of his cancer that was visible in the April MRI is now gone! We will meet with her tomorrow to discuss the results and the next step in treatment but it looks very likely that he will now be able to have a stem cell transplant soon.

We thank God and all of the people who have been praying for Andrew and for all of us.

Anne, Bruce, Andrew and Sarah

Friday, June 16, 2006 2:05 PM CDT

June 16, 2004 – the day we found out that Andrew had a brain tumor. It was so scary – surgery, waiting on the pathology, wondering what would happen. Then everything seemed to level out – Andrew was given a good prognosis and he handled the treatments so well. It wasn’t fun and everything wasn’t perfect but as I told lots of people considering the situation it really had not been that bad. It seems like a million years ago and it is hard to believe that two years later we are still doing this. So we are waiting nervously until next Tuesday and the MRI to find out what our next step will be. Just like we have all along we are trying hard to make the best of it and live life as much like we would if this had not happened.

We did have a nice week at the beach. Bruce was able to stay through Tuesday and we came home Thursday night - many thanks to my parents, JeJe and Snyders for a much needed vacation. The weather was nice – lots of sun but the surf was little rough so we played in the sand, caught crabs at the lake and swam in the pool. Andrew did venture in a few times to get “smacked by the waves” as he calls it. It was so nice to see him playing hard and laughing so much but at the same time it reminds us how far away from normal we are. He certainly can’t do the things that his friends are able to do and after a few hours of playing on the beach he needed a 2-3 hour nap each day. All things considered, it was better than not being at the beach and we will take it.

We had his labs checked this morning and everything seems to be holding steady so I guess that is good. His MRI is next Tuesday at 7AM – we don’t meet with Dr. Reddy until Wednesday but she is planning to call us on Tuesday after she looks at the MRI so maybe we will know something before lunch.

Thanks for all of the prayers.

Anne

Bruce has added some new photos from our beach trip so check them out.

Friday, June 9, 2006 3:41 PM CDT

Yipee!!!!! Andrew's counts are better and we are headed to the beach! Sarah is already at the beach with her Granny and Granddaddy and reports are that she is missing us. It is kind of an open ended trip - we will stay as long as the weather is nice and Andrew is feeling good - of course we do have to be back for the MRI on June 20th.

Thanks again to everyone who is praying for Andrew and our family.

Anne

Thursday, June 8, 2006 1:41 PM CDT

Well our Wednesday clinic appointment went about as usual – Mr. Grumpy had to be reprimanded for growling at a few people. He pretty much straightened up after that and had his labs drawn and got his chemo. His white count is still very low and he needed platelets. This, of course, made him quiet mad – luckily for him they could not get the right kind of platelets and they scheduled him to come back today. I’m really not sure why coming back the next day was OK with him but it was. So we went to clinic this morning for platelets (he played GameCube) and we were home by noon. He is currently napping on the couch which is nice since he usually wakes up in a good mood. We are going to have his counts checked again on Friday and hopefully they will be up. When his count come up we are planning to get away to the beach for some much needed fun. We usually go in June with our friends the Snyder’s but I had not mentioned it to Andrew in case we could not go. Finally, a few days ago when he was complaining about his shots I told him that if his white count comes up we can go to the beach – he was so excited. He has gotten much better about taking the shots but a little extra motivation never hurts.

Thanks for checking on Andrew.

Anne

Monday, June 5, 2006 7:54 PM CDT

After Andrew's clinic visit last Wednesday I was a little concerned about waiting until today to have his labs checked again. It is a little inconvenient to need blood or platelets or medicine, but it is about 100 times worse to need it over the weekend and have to go through the ER. So I had his labs checked on Friday morning and he did need platelets which he was able to get in clinic which is not too bad. Also, by Friday his white count had hit bottom again so we spent the weekend at home. Andrew has felt pretty good and has played gamecube, legos and watched TV. Unfortunately he can't get out or be with his friends - hopefully that will change soon. We did have labs rechecked today and platelets/RBC are good but white blood count is still very low - we will continue the shots at home to help boost his white count and maybe it will be up soon. He has a clinic visit on Wednesday for labs and chemo.

Thanks again for all of the support and messages - they mean so much to us.

Anne

Thursday, June 1, 2006 8:03 AM CDT

Bruce and I cannot fully express how humbled and overwhelmed we were by the outpouring of prayers and love for Andrew and our family that was demonstrated by everyone who came to the service tonight and everyone who continues to pray for us. We have felt the love and prayers of so many people over the past two years and the service tonight was a powerful expression of that love – we thank God for it and we thank everyone who has prayed for us. When this journey started nearly two years ago - the night before Andrew’s surgery I asked God to help me to always be thankful - no matter what happened. Mostly that has been easy to do – lately a little harder – but tonight’s service reminded us that we have so much to be thankful for: God’s love, our wonderful family, all of our caring and supportive friends and every moment we have with our precious children.

Andrew had a clinic visit this morning for chemo and labs, it went well right up until he found out that he had to stay 5 more hours and get blood – he was not at all happy about that. Dr. Reddy thought he was doing very well considering the amount of chemo that he is on. The social worker, nurses, Angela and Clay and Dr. Reddy gave him an award for his “record high” white count from before stem cell harvest – it was homemade and had his picture on it and they all signed it and laminated it – he was very proud. His red count, on the other hand, was pretty low and that is why he needed blood today. Hopefully that will give him a little more energy. Andrew will have labs checked on Monday and a clinic visit next Wednesday and hopefully that will be all of the medical stuff until the MRI on the 20th.

Thanks again to Kathleen and Liz for organizing the prayer vigil and to Michael, Penny and Nick for leading the service.

As always thanks for checking,

Anne and Bruce

Monday, May 29, 2006 8:10 PM CDT

We are home! Andrew got to come home shortly after noon today. He got sick a number of times during the night. He got some medicine for that in the early am and then slept pretty good after that. He was very happy to get home and take a nice warm bath. He'll get his labs checked on Wednesday.

Sunday, May 28, 2006 8:33 PM CDT

Andrew’s methotrexate level was low enough on Saturday morning for him to start getting his next two chemo meds. They started the process around lunch and finished around 9pm then he had to have some more medicine to help protect his kidneys and that was given every three hours throughout the night. Bruce stayed with him Saturday night – Andrew loves his time with his dad. Andrew did get sick several times during the night – this is the first time he has gotten sick during this stay and that is a great improvement from the first round. He slept most of the morning and seemed to feel pretty good when he woke up. Today he had to repeat the same sequence of medicine as yesterday – they did not get started until about 3 but if all goes well he will be finished before tomorrow morning and then hopefully he will get the OK to come home. Andrew continues to do well with all that is thrown at him but we are very aware that all of these small victories don’t add up to much if the medicine is not working. On that note I have left the information about the prayer service and vigil below. –Thanks, Anne

Also, we wanted to let everyone know that several of our dear friends at church have organized a prayer vigil for Andrew. Certainly we have continued to pray during this entire journey but we feel strongly that now, while the chemo medicine is in his body, is the time to pray. Specifically, we ask that you pray that the medicine is working and that when he has his MRI on Tuesday, June 20 that his cancer will no longer be evident and that he will then be able to have a stem cell transplant. There will be a service of prayer on Wednesday, May 31st at Vestavia Hills United Methodist Church at 6pm – everyone is welcome and we would be grateful to anyone who would like to come and pray for Andrew’s healing. Childcare will be provided during the service and a reservation is not necessary. Additionally, there will be a sign up sheet at the preschool entrance if you would like to sign up for a specific time to pray between the 31st and his MRI on Tuesday, June 20th. You can sign up for a specific time and you can pray at the prayer chapel at VHUMC, your home or your place of worship. You can also contact Kathleen Lawrence to sign up at 979-0662 or Katlawrence@charter.net

Many thanks to Liz Losole and Kathleen Lawrence for organizing the prayer vigil – as always – thanks to everyone who is praying for our family and taking care of us.

Anne & Bruce

Friday, May 26, 2006 11:06 PM CDT

Well, we are still in a holding pattern – Andrew’s methotrexate level was still a little high today – so he was not able to start his next two chemo medicines. They will check it again in the morning and hopefully we can start more medicine then. Even if he does start more medicine tomorrow it is hard to say when we will get to come home – maybe Monday or Tuesday. He spent today eating, watching TV and playing GameCube- not a bad day. His buddy Graham came for a visit and they played lots of GameCube. It is great to see him smile and laugh so much. Sarah and Bruce came this evening and we had a family game of smash ball in the hall which they both enjoyed. There is a small area in the hall not too close to the patient rooms where Andrew likes to get out and play when he feels OK.

Also, we wanted to let everyone know that several of our dear friends at church have organized a prayer vigil for Andrew. Certainly we have continued to pray during this entire journey but we feel strongly that now, while the chemo medicine is in his body, is the time to pray. Specifically, we ask that you pray that the medicine is working and that when he has his MRI on Tuesday, June 20 that his cancer will no longer be evident and that he will then be able to have a stem cell transplant. There will be a service of prayer on Wednesday, May 31st at Vestavia Hills United Methodist Church at 6pm – everyone is welcome and we would be grateful to anyone who would like to come and pray for Andrew’s healing. Childcare will be provided during the service and a reservation is not necessary. Additionally, there will be a sign up sheet at the preschool entrance if you would like to sign up for a specific time to pray between the 31st and his MRI on Tuesday, June 20th. You can sign up for a specific time and you can pray at the prayer chapel at VHUMC, your home or your place of worship. You can also contact Kathleen Lawrence to sign up at 979-0662 or Katlawrence@charter.net

Many thanks to Liz Losole and Kathleen Lawrence for organizing the prayer vigil – as always – thanks to everyone who is praying for our family and taking care of us.

Anne & Bruce

Thursday, May 25, 2006 12:35 AM CDT

Andrew got his first chemo drug for the cycle Wednesday morning. He felt pretty good most of the day. Took a couple of naps and said his tummy hurt a few times but was definitely feeling better than the first time he got this drug. Thursday is going to be just hanging out and getting fluids and monitoring him. They have to make sure the methotrexate level comes down before the next drug so that might be Friday.

Tuesday afternoon: We finally got the word that they got enough stem cells yesterday for 4 transplants so they did not need to do anymore today. We are still in our room on the 6th floor and we are waiting on a room on 4th floor and they can start giving him fluids to prepare for the chemo.

Monday night update: The stem cell harvest went well. Andrew was not pleased at all about the tube put in his upper leg to do it but he eventually got over it and watched cartoons and a movie for most of the day along with a pretty decent amount of eating. The harvest procedure ended about 5 pm and they won't know if they got enough till in the morning so we are spending the night till then. We have asked, since he would be checking into the hospital on Wednesday, if we could just move that up and move from our room on the 6th to a room on the 4th tomorrow instead of going home for about half a day and coming right back. We'll update tomorrow.


Sunday, May 21, 2006 9:18 PM CDT

First we want to thank everyone who came out to the Wheeling for Hope event today. We are so appreciative of the support for Andrew, our friend James and all of the others who are fighting this disease. It was a beautiful day, the turn out was great and everyone seemed to be having a good time – sounds like a huge success.

Andrew had to go this morning to the stem cell clinic to have his labs checked. His white count was so high that the lab called up to tell the nurse about it – he is so proud. So everything is on for having his stem cells harvested tomorrow – if they are able to get enough we will be able to come home tomorrow – if not he will stay overnight and they will try again in Tuesday. He is scheduled for round two of chemo on Wednesday – round one took a week so I guess we will plan on that. Approximately 3 weeks from Wednesday he will have an MRI and we will find out if the chemo is having any effect on his cancer. Obviously that will be a big day. Please pray that the chemo is working. If the chemo has done its job then he would be a candidate for a stem cell transplant - if not, well we will just have to cross that bridge if we come to it.

Hopefully round two will be tolerable – we tend to do a little better when we know what to expect. Even though what we expect is that it will be difficult – Andrew seems to bounce back pretty well.

As always, thanks for all of the prayers, messages and support.

Anne

Friday, May 19, 2006 2:16 PM CDT

Just wanted to let everyone know Andrew has been feeling good all week. He went to school a few days for an hour or so at a time. He had to start getting his white count boost shots again last night to help prepare for stem cell harvest on Monday and then chemo cycle will start possibly on Wed. I think it's going to be tougher this time because he knows how bad this chemo made him feel and just now he's finally feeling better from the first time.

Monday, May 15, 2006 4:16 PM CDT

I've been meaning to put a link to an event that will help raise money for brain tumor research. It's called "Wheeling For Hope" and it's Sunday May 21st at Ross Bridge and we plan on being there. Info is at:
http://www.wheelingforhope.org

Also, Andrew had a real good day Sunday playing with his cousins and Mr. Grumpy only showed up briefly late in the day.

Saturday, May 13, 2006 9:16 PM CDT

Picture Page has been updated. Be sure to check out the one of the quilt that Andrew's class made for him.

Andrew has been feeling better and continuing to eat pretty good. Friday he went to school for May Play Day and stayed for about an hour. This was the first time Andrew has gotten to do anything outside of home/hospital in over three weeks and he really enjoyed getting to see all his classmates. Saturday he went to Sarah's last t-ball game. Sarah finished the year the way she started...with a cast on her arm (she gets it off next week). She had a great time playing this year and was very excited to get her trophy.

Overall, Andrew is starting to feel better. He seems to feel good for a little while and then all of a sudden he's upset about something and there's just no reasoning with him. Usually he'll end up taking a short nap and then he'll be back to normal. Hopefully next week will have more of the happy Andrew.

-- Bruce

Thursday, May 11, 2006 8:02 PM CDT

Well, after a good many difficult days we have some good news to report – Andrew’s counts are WAY up! His white count was so high that I asked the nurse three times if she thought it was accurate. I was told that it was checked and double checked. It was hard to believe since his counts never came up that fast during his regular course of chemo and now he is on much higher doses. The difference is that he is taking the neupogen shots each night to boost his white count and they must be working. As difficult as it has been to give them to him each night I guess that it is worth it. The other good news is that since his white count is so high we can take a week off from the shots – I don’t know who is happier, me or him.

I was hoping that Andrew was starting to turn the corner with feeling better and hopefully the news that his counts are up and he can see his friends will give him a boost. He was so excited when I told him. He has had so many medicines and supplements to take and with each new side effect it seems we have to add something else to try and combat it (almost makes you not want to report side effects). With Andrew not being the best medicine taker it has been difficult to fit it all in. It seemed like the days were filled with trying to get him to eat, take his medicines or massaging his arms and legs because they hurt. To try and improve the situation we came up with a chart where he could earn stickers for taking AM or PM medicines without being difficult, taking his shot without being difficult (he told me up front that this would not happen), eating good for the day and being cooperative at labs. He was pretty excited about the system and when he earns enough stickers he can pick out a new GameCube game and he is well on his way. As for his eating it was starting to improve about the time he started an appetite stimulant – so I’m not sure which it is but he is starting to eat a little more. Last night we were up at 11:30 having another bowl of pasta and Andrew said “I think the food hog might be back.”

He still does not feel great but hopefully that will improve – especially with getting to see his friends. We are looking forward to a little more enjoyable week before we have to do it all over again. As always thanks for all of the prayers, messages, cards, meals and goodies for us.

-- Anne

Tuesday, May 9, 2006 2:32 PM CDT

Andrew got to go home today! His counts are still low but appear to be on the rise. He was in a pretty good mood last night and played in the hall again and was feeling pretty good this morning. They gave him an appetite stimulant so hopefully he'll start eating more at home and not have to get hooked up to the TPN stuff at home. He'll get his labs checked again Thurday and several times a week after that. He's scheduled to start another chemo cycle on the 24th so we won't be getting much of a break.

Thanks to everyone for the prayers, food, gifts, cards, guestbook messages, and rides for Sarah.

-- Bruce

Sunday, May 7, 2006 5:10 PM CDT

Andrew is still in the hospital and they said we might be there a couple more days. His counts have come up some but are still very low, but temps have all been good and no infection was found in blood. He felt pretty good Saturday and made two trips out of the room to play in the hall. We watched Hoodwinked (very funny) and played video games and he actually ate some at lunch and dinner. They hooked him up to a nutrition feed (TPN) late Saturday night and shortly there after he threw up. He got some medicine for that and slept mostly from then until after lunch Sunday. Anne said he has perked up a little and ate some pasta and played games for a little while before having another nap. Thanks for checking.

- Bruce


Thursday, May 4, 2006 10:55 PM CDT

Andrew had his regular clinic appointment on Wednesday for chemo and labs – his red count was low so he stayed to get blood which takes about 4 hours and his white count (ANC 60) was even lower than Monday. So it was not a surprise when Andrew woke up this morning with a temp of 102. When your white count gets that low it is almost impossible to avoid an infection. Even with keeping him isolated and doing all of the hand washing, etc. often times the infection comes from bacteria that we all normally have on our body or in our mouth. Since it was during regular clinic hours we were able to come to clinic and start fluids and antibiotic before being admitted. Andrew’s hair started coming out in handfuls this morning but with the fever and getting to clinic we did not really notice. Once he was lying down in clinic and getting his fluids it was all over his pillow and face. It was everywhere and was itching and driving him crazy. My mom was nice enough to bring the clippers to us and when we got in a room we went ahead and shaved his head. He is much happier than having hair all in his face – but we were sad to see all of his hair go (again).

Andrew’s wonderful classmates at East have been working for over a week on a special project for him and it was delivered today. It is the most beautiful and unique quilt you have ever seen – each of his classmates and his teachers created their own picture and message for him on a fabric block and then it was put together in a quilt by Gina Blake. It is so special and when I brought it to him in the hospital tonight he wasn’t feeling very well but he wanted me to read him everything on it. It put a smile on his face. Thanks to Ms. Nicole, Ms. Dennis, Ms. Blake and all of the Dragonflies.

Since his counts are so low, even if his infection/fever go away we still may be here for about a week. Thanks to everyone for their prayers and concern for Andrew – we are so appreciative.

- Anne

The funeral service for my dad on Tuesday was very nice. There was no way Andrew felt good enough to ride in a car for that long or be around that many people with his low counts so Anne stayed home with Andrew. Sarah went with me though and she handled it perfectly. I was worried about how she would handle the visitation and viewing, but the funeral home did such a good job in making my father look better than he had the last time we visited that I wasn’t as worried. Sarah asked to go up and see him (actually she asked to go several times) and I think she thought he looked very good in his uniform. She was very interested in the shadowbox of my father’s medals and she wanted to know “which one is best?” (we think it was the Bronze Star). The military graveside service was excellent…the honor guard provided the bugler and 21-gun salute, the chaplain’s words were very appropriate and he also asked a special prayer for Andrew. I didn’t think of it till later but my dad should be able to make sure someone upstairs gets our prayers for Andrew. Thanks to all those who offered their sympathies and made donations (see May 1st update for info if you’d like to make one).

- Bruce

Monday, May 1, 2006 12:00 PM CDT

Monday morning update:
Andrew slept alot on Sunday but felt better late in the day and slept good that night. He got his blood checked this morning and his white count was very low (130) and he's getting some platelets today.

An update for the funeral arrangements for my father (all in Hsv):
Graveside military funeral at 3 pm Tuesday at Maple Hill Cemetary
Visitation at Lofton funeral home at 12-1 for family and 1-2 for friends.
In lieu of flowers, the family has asked that donations can be made in memory of Arnold Long to Children's Hospital for "Andrew's Team". Please be sure both names are on check so that money will go directly to benefit pediatric brain tumor research.
Address for Children's is:
1600 7th Avenue South
Birmingham, AL 35233


Just wanted to give everyone an update since we’ve been home. Thursday night, Andrew did not sleep well at all. He has a rash and itching that are apparently a side effect of one of the drugs he got and he just can’t rest well. Friday was more of the same…just general feeling bad…stomach hurts, legs hurt, and itching. He started perking up a little late in the day when his cousins (Jen and Julie) came to visit. He didn’t eat much and he had trouble sleeping again Friday night. He slept late Saturday morning though and when he finally got up he seemed to feel a little better. He asked for some milk and he watched some cartoons and played a game with his granny while we took Sarah to her t-ball game. He took an afternoon nap and Saturday evening his cousins (Clarke, Lyle, & Len) brought pizza over. He played some and ate about half a piece of pizza and the rest of tonight he has been in pretty good spirits. He’s getting a little better about taking all the different medicines he has to take several times a day and that shot Anne has to give him once a day. Overall, we felt pretty good about the way he seemed to bounce back today.

On a sad note that I knew was coming any day, my father passed away Saturday evening. He was 82 years old and a WWII veteran with over 30 years in the Army. He had survived cancer in the 1970’s but had a number of health problems over the years, hadn’t been able to walk in a couple of years, and had taken a real turn for the worse in the past month or so and was just too weak to recover. Andrew and Sarah have asked a number of questions about dying and heaven after one of our recent visits to see my parents. When we told them the news tonight they were sad…Sarah asks a lot of practical questions…”Why don’t you need your body in heaven? Why can’t we take a plane to heaven? Will God be in heaven?” … Andrew answered some of them for her…”Yes, God will be there to take care of granddaddy. And in heaven, granddaddy will be able to walk and hear good.” What more could I add to that other than…”You’re right, Andrew.”

Thanks for checking on us,
Bruce

Thursday, April 27, 2006 3:11 PM CDT

Well, we are finally home. Yesterday, Andrew’s sodium level did come back up after the first drug so they were able to give him the other drug last night as well. He felt decent for a little while last night and was sleeping when I left but Anne said he started getting sick around 3 am and several more times during the early hours. When I got there in the morning he was sleeping again. Before we left we had someone come by to show us (ok, to show Anne) how to give Andrew shots of nupregine (probably misspelled) for the next 20 days. These shots are to boost his white blood cell count in preparation for harvesting his stem cells for use if we make it to the stem cell transplant treatment. So we have a clinic visit scheduled for Monday and it sounds like he may have to get his counts checked a couple of times a week till we do the same chemo cycle again in about 3-4 weeks.
Overall, the high-dose chemotherapy lived up to the name and that 7 day stay in the hospital was probably worse than all his previous chemo stays put together. He just felt so bad most of the time that he didn’t want to watch TV (or let anyone else watch it) or play Gameboy. For those of you that know Andrew, you know that means he is really feeling bad. It was a switch from the previous chemo’s where he had a few bad hours and the rest of time he was fine. Previously, he might throw up and then ask for a Happy Meal, but this time there were only a few hours where he felt good and he hardly ate anything since last Friday night. Last Thursday he walked into the hospital and was an outwardly happy and healthy boy and now a week later he had to ride out in a wagon because he was too weak to walk more than a few steps. He was glad to get home though and he looked at some of the gift baskets his friends had sent him and the big soccer teddy bear that his soccer team left for him. He headed for the couch and wanted to take a nap…I’m not sure if he’ll be able to sleep without someone coming to take his vital signs every few hours though.

Thanks to everyone for all the cards and messages to Andrew and now that we’re home hopefully he’ll feel up to looking at all of them. Thanks to everyone for all the prayers, food, and support that you’ve shown our family during this difficult time.

Thanks again for checking on Andrew,
Bruce

Wednesday, April 26, 2006 1:00 PM CDT

Tuesday afternoon update:
Andrew got his two chemo medicines Monday afternoon. Before that he felt good enough to get out in the hall and walk a bit and play a little badminton...he stands still and you throw the birdie right to him and he smacks it back at you...he's not bad considering he's tethered to an IV pole. He started running a fever Monday night after getting the medicines so they get concerned when anyone on chemo gets one because it might just be the medicine causing it or could be an infection. They ordered a chest x-ray around 8pm to make sure everything was ok and it looked fine. The Tylenol finally started making his temp go back down and by morning it was back to normal. He didn't sleep very good. He felt a good bit better later this morning and he got up and walked around the 4th floor a couple of times and ate a couple of chips. He still hasn't eaten much of anything since Friday. We didn't realize that he is scheduled to get the same two chemo drugs again before we go home. They checked his labs at noon and they'll check them again at 4pm to see when he can start getting the chemo again. So I guess there is still a small chance of going home tomorrow but it could be Thursday.

Late Tuesday night update:
Andrew felt bad and slept from about 1 pm till almost 7 pm. He felt ok for a few minutes after waking up but soon after he just felt bad again. His lab work showed his sodium level was still too low to get chemo so it will be at least tomorrow before he gets it and that will probably keep us there another day. It's so sad to see him like this because there's just nothing we can do to make him happy and he's so weak from not eating. He was sleeping again when I left so hopefully he will get some decent sleep and feel better tomorrow.

Wednesday update:
Andrew slept ok last night. Managed to get him up in the morning and take a walk down the hall to visit our friend James getting his chemo. When we got back to room he felt bad again but Anne managed to get a few bites of jello in him. If he's not saying how bad his tummy hurts he's wanting to know when we can go home. His sodium level wasn't good enough this morning but when I left after lunch they said they were going to start fluids again and give him one of the drugs and then check labs after that. So getting out tomorrow would be the earliest at this point.

Thanks for checking on Andrew,
Bruce

Sunday, April 23, 2006 8:56 PM CDT

Just wanted to give everyone a quick update for the weekend. We checked into the hospital Thursday and Andrew started getting fluids and didn’t start getting his chemo medicine till Friday morning. This is a chemo medicine he’s never had before and by Friday afternoon he was pretty sick and the nausea medicine they give makes him very sleepy. He felt a little better Friday night after napping the rest of the afternoon and ate a bowl of cereal and slept decent. But he seems to have felt worse Saturday and Sunday. He got up a couple of times and walked around the 4th floor but mostly he just wants to lay in bed. Just doesn’t want anything to eat…takes a few bites and says his tummy hurts. He’s not scheduled to get any more chemo medicine till Monday and maybe we’ll get to go home on Tuesday.

Thanks for checking on Andrew,
Bruce

Friday, April 21, 2006 0:28 AM CDT

Once again we would like to thank everyone who is praying for Andrew and our family – it is truly humbling and we appreciate you all. Andrew enjoyed reading all of the messages from Ms. Nicole and the Dragonflies and all of his other buddies at East. We had a good two days at the beach – Andrew did not catch the big one but he had a pretty good time riding on the boat. Monday was very windy and that made the fishing a little difficult. They were able to get one in the boat but he was too small and one keeper got away. Other than that Andrew and Sarah played on the beach, swam in the pool, caught crabs at the lake, rode their bikes, ate Easter candy and generally had a good time. Our beach neighbor and dear friend Sheila Goode who is a professional photographer offered to take some pictures while we were there and some of them are in the gallery as well as the one on the home page. Many thanks to her.

Andrew’s records have been reviewed by a physician at St. Jude and they agree with the doctors here on the diagnosis and our current treatment plan. Treatment here will include more intense chemotherapy that would take about a 5 day hospital stay and then a few weeks off to recover followed by another round of chemo and then an MRI to see if it having any effect on the cancer. If that works then Andrew would probably have to do a stem cell transplant.

As always, thanks for checking on Andrew.

Anne

Saturday, April 15, 2006 8:37 AM CDT

The messages and e-mails that we have received since our bad news have been overwhelming…to know so many people are praying for our Andrew is a great comfort to us.
Andrew has been doing so good lately…the Disney trip was so perfect…his energy was great and I even felt guilty about being on a “wish trip” because he looked so good. Since his initial diagnosis, his surgery and treatment had gone so textbook it was scary. Sure it wasn’t easy seeing your child in ICU with a big scar on the back of his head, seeing him lying in that big radiation machine knowing that not only is the radiation killing the cancer but is also causing permanent brain damage, seeing him get chemo drugs knowing they are killing cancer but damaging his hearing permanently. But everything had been done to minimize the damage and save his life and with no major complications it seemed like we had a good start to reaching that 5-year cure date.
Even though Anne and I knew that recurrence was always a possibility and each MRI brought that fear and each time we waited to hear those words ”it’s clear” we just weren’t prepared to hear “the tumor is back” this soon. Then the following day after an MRI of the spine to hear that the cancer has spread to his spine was just devastating. Being told that one option is to not pursue any treatment and he might only live a few months was just physically painful…especially when Andrew is in the next room playing with Ms. Angela and Clay and having a great time. We shed a lot of tears with each other over the thought of Andrew not being with us. But there are some other options. Our doctor is in contact with St. Jude’s about some new clinical trials for his type of tumor…and they are also going to review his MRI scans for a second opinion. Currently, we are scheduled to start a more intense chemo treatment starting on Thursday at Children’s with the hope that after a cycle or two we would see the cancer responding to the drugs and if not we re-evaluate. Between now and then we plan to do normal stuff then attend church for Easter and afterwards go to the beach from Sunday to Wednesday. The trip is partly to let him have a good time while he is feeling good and partly to just get away and prepare ourselves to fight cancer again.
We told Andrew that his tumor had returned and we would be doing more chemo and he said “Ok”.
Thanks again to everyone for everything you’ve already done for us and keep the prayers going for Andrew and all the kids that face cancer.

Bruce

Wednesday, April 12, 2006 5:35 PM CDT

Our hearts are broken and the pain we are feeling is hard to take. Andrew had a follow-up MRI yesterday which showed that his brain tumor had returned. He had another MRI this morning to check his spine and it showed that the disease has spread. If you saw him right now you would have a hard time believing that he is sick – he wanted to go to soccer practice last night so we took him and he had his best practice ever. We met with Dr. Reddy to discuss options- the fact that his tumor returned only 6 months post treatment and that it has already spread to his spine is evidence of its aggressiveness. We have not given up hope but we know that the odds are not in our favor this time and we want to do what is best for Andrew.

Please pray for Andrew and us as we try to make the best decisions possible in our circumstances. Thank you for checking on Andrew, Anne & Bruce

Wednesday, April 12, 2006 5:35 PM CDT

Our hearts are broken and the pain we are feeling is hard to take. Andrew had a follow-up MRI yesterday which showed that his brain tumor had returned. He had another MRI this morning to check his spine and it showed that the disease has spread. If you saw him right now you would have a hard time believing that he is sick – he wanted to go to soccer practice last night so we took him and he had his best practice ever. We met with Dr. Reddy to discuss options- the fact that his tumor returned only 6 months post treatment and that it has already spread to his spine is evidence of its aggressiveness. We have not given up hope but we know that the odds are not in our favor this time and we want to do what is best for Andrew.

Please pray for Andrew and us as we try to make the best decisions possible in our circumstances. Thank you for checking on Andrew, Anne & Bruce

Monday, March 6, 2006 10:36 PM CST

Since our last update, Andrew has been gradually regaining his energy, strength, and hair. We mentioned in our last update that he was having trouble with his ears. Since then he has had his tubes in his ears replaced and he hasn't had any more ear infections since then and I don't know for sure but I think he has been hearing better since then as well. He will finally be getting his hearing checked this week for the first time since July. Andrew and I participated in the Mercedes Kids Marathon 1 mile run which was the final mile of 26 miles that he and the other kids had been running in PE class during the fall. He started off kind of quick but then he got tired and we walked most until the end and he ran across at the finish. I don't know how long it took us to walk/run that one mile but it didn't really matter...he finished something I wouldn't have thought possible a year before and I couldn't have been more proud of him.

I've put a few pictures out of the hundreds that were taken to show what a great time we had at DisneyWorld last month. We can't thank the Magic Moments people enough for providing us with this "wish" trip and for the Give Kids The World Village (www.gktwv.org) for taking care of us while we were there. It was the first time the kids traveled by airplane and they loved it. We couldn't have asked for any better weather while we were there, everyday was about 75-80. The Village had a heated pool, putt-putt course, carousel, fishing pond, several game rooms, huge electric train setup, theatre, horse stable, breakfast/dinner cafeteria, and an ice cream parlor (we ate alot of ice cream during this trip). We could have never left the Villiage and had a great time. As a matter of fact, most days right after lunch Andrew and Sarah started asking when we could go back to the Village and go to the pool. We went to the Magic Kingdom the first day and rode most of the rides that we wanted and had lunch with Winnie the Pooh and Friends. The second day we went to Universal's Islands of Adventure and had probably the most fun there (well, except for the complete soaking we got on the Popeye ride). The Talking Fountain was one of the highlights for the kids....basically it's a big fountain with a guy somewhere who has a camera and a microphone and a bunch of ways he can shoot water at the kids or up in the air. There were a group of kids completely mesmerized by the fountain and we could hardly get ours to leave to go ride a roller coaster. We rode a number of good rides there...the Spiderman ride was probably the best. As we were getting ready to leave Universal, an employee at Universal must have spotted Andrew's special button he was wearing and stopped us and asked us if we'd like to meet some superheroes. So right after all the superheroes finished their parade thru the streets, they came back out and met with Andrew and Sarah and gave Andrew a certificate and we all had our picture made with them...that was extra special. The third day we went to Animal Kingdom in the morning and we found what became Andrew's favorite ride...the Expedition Everest...a very unique roller coaster. In the afternoon we went to MGM and saw the Indiana Jones stunt show and then got to meet him after the show and then after dark we saw Mickey's Fantastmic show. The fourth day was SeaWorld and we probably should have gone back to the pool right after the Shamu show...that day was probably the hottest and most crowded (it was President's Day) and with no rides to ride and with such long gaps between shows it just wasn't working so we packed it in early and went back to the village and went to the pool and then later that night Shamu showed up at the village for the pool party. Different characters from Disney/Universal/SeaWorld come to the village each week to visit the kids. The fifth day was our last day to go to a park so we decided to do our favorites at Disney...we went to Animal Kingdom in the morning and played in DinoLand and then Andrew rode the Expedition Everest 3 times. For the afternoon we went back to the Magic Kindgom and rode Splash Mountain and Space Mountain and then Sarah's only favorite roller coaster ride...Goofy's Barnstormer. We learned early in the trip that Sarah did not like any ride that went too fast, into a dark area, or got you wet...well, except until later when she told someone how cool that ride was. Andrew was talking on the phone one night to his cousin Jen telling her about all the great rides he had been on and apparently she asked if Sarah liked them and he said "No, Sarah didn't ride that one because it was too scary" and I thought Sarah was out of the room and I said to tell Jen that Sarah was scared of the trams that took you from the parking lot to the park...Sarah overhead me and came around the corner and whacked me on the head with her hat and Andrew thought it was so funny he almost fell down.

I mentioned the special button Andrew wore because without that we wouldn't have been able to do as much as we did during our week there. In the orientation Anne and I went to the first night we arrived, they gave us that and explained that they didn't want the children on a "wish" trip to have to wait in lines. Andrew's stamina still isn't 100o that button plus the provided double stroller at every park made it possible for us to ride almost ever ride we had on our list and to ride his favorite ones several times. The Village is run almost entirely by volunteers and it is such an amazing place...I think they had room for about 100 families at a time and were preparing to double in size...we can't ever stay there again but they said we can visit them anytime we're in Orlando and we definitely will (although Anne and I talked about it and we're not sure we want to go back because this trip was so perfect).
Two days after we got back home, Sarah fell and broke her arm. She's doing fine and she'll have a cast on for about 5-6 weeks. It slowed her down for a couple of days but she's near full steam now. She's handling it great but we are so glad it didn't happen before our trip or it might have put a damper on the trip. She, unfortunately, will miss most if not all of her t-ball season. Andrew just started the Upward Soccer season with me as one of the coaches and it looks like that is going to be alot of fun for both of us.

Andrew is scheduled for his second post-treatment MRI on April 11th and we will pray for his continued clean scans and improving blood counts and we'll update following that.

Thanks for checking on Andrew,
Bruce

Thursday, January 12, 2006 9:01 AM CST

Andrew had his first re-check in 3 months yesterday – it included an MRI, lab work and visit with Dr. Reddy. Good news on the MRI – it was clear. His labs are not normal but continue to improve – it may be another month or two until they are completely normal. Overall, Dr. Reddy thought he was doing well. He was scheduled for a hearing re-check but by the time we finished everything else we had missed the appointment and Andrew was probably too tired to be fully cooperative. We will re-schedule that as soon as possible – we continue to be concerned about his hearing (or lack thereof).

Since our last update in October Andrew has celebrated his 7th birthday and Sarah her 5th. We are enjoying a more normal routine; however, Andrew has had more illness this fall than he did the entire time he was on treatment - mostly ear and sinus infections but also a stomach virus just for variety. His ear infections were pretty bad and made it even more difficult to tell about his hearing. He has missed several days of school – more than he missed all of last year for illness. It just reminds us how amazing his year was.

We have all been feeling well for a few weeks now so hopefully things will continue to improve in 2006. We are looking forward to a trip to Disney World in February and Andrew is planning on playing Upward Soccer this spring. His next MRI and check-up is scheduled for April 11th so we will update after that.

Thanks for checking on Andrew.

Anne

Thursday, October 20, 2005 10:47 PM CDT

Sorry it has taken a few days to get the update posted. The benefit softball game between Samford University and the University of Alabama Huntsville was a HUGE success!!! It looks like the final total will be over $12,000 raised for The UAB Pediatric Neuro-Oncology Program at Children’s Hospital.

The day could not have been more perfect from the weather to the great crowd the exciting game and even Andrew’s first pitch. We are so appreciative to both of the head coaches (Les Stuedeman and Beanie Ketcham) for the opportunity to have this benefit. Also, the players from both teams were so supportive and great with Andrew – he felt so special and really enjoyed the day.

There are so many others to thank who worked hard to make the event a success, they include: My dear friends Michele Blackmon who did so much I can’t even remember it all, Krista Whatley who worked harder than I did on game day, Kelli Rucker who was a great help at the game. All of Bruce’s golf buddies and my brother who came early to move the fun zone. Emily Hornak from Children’s Hospital who was a huge help. Roseanne for her smarts. My parents and JeJe Ellard for cooking 100 hot dogs.

Our sponsors: Upstairs South (Su Su Davis) who donated all of the t-shirts and water bottles. Document Outsourcing (Su Su’s sister) who printed our bookmarks. Sneaky Petes, Shop-a-Snak, and Frito-Lay who all donated food to the concession. American Printing who printed our large posters. Promotional Creations who donated prizes and Kim Benos who donated prizes.

Generous corporate donation from: Tidmore Flags, Imaging Business Machines, and an Anonymous Friend.

Volunteers: Fran Braasch and Jennifer Brown who arranged for about 20 VHHS girl’s athletes to come and help at the game. They were all wonderful and so great with the kids – Andrew wanted a few of them to come home with him.

Most of all thanks to everyone who gave so generously to a cause which is so important to us.

Andrew’s next MRI/check-up is scheduled for January 12, 2006.

Thanks again,

The Longs

Thursday, October 6, 2005 10:51 PM CDT

Andrew had his first post-treatment MRI on Wednesday and everything was clear. He did the best he's ever done with the MRI, he stayed perfectly still and they didn't have to tell him not to move once. He was very proud of himself afterwards. His counts are still a little low but are improving. The next follow-up MRI will be in January.

I just want to update everyone on the plans for the softball benefit game between Samford University and the University of Alabama Huntsville. The game is scheduled for Sunday, October 16th at 2:00. Admission is free with a donation.

Fun Zone: The fun zone will open at 1:00 and will include a moon jump, games and giveaways.

Concession: Hot dogs, chips, cokes, etc. will be available with all proceeds going to the foundation.

Pre-game Ceremony: All kids who would like to participate will be allowed to run onto the field with the players as they are introduced. Andrew will throw out the first pitch. If you would like for your child to participate please arrive before 1:45.

Arm Bands: We will be selling “Andrew’s Team” arm bands for $2 each.

Directions to the Samford University softball field: Enter the main SU campus entrance off Lakeshore Dr. Take the first left turn on Montague Dr. Pass the football stadium on the left, at the next 4-way stop turn left on Dawson Dr.; pass Sibert Gym on the left. The softball field is just past the tennis courts on the left.

Donations: If you cannot attend the game but would like to make a donation, checks should be made payable to Children’s Hospital with “Andrew’s Team” on the memo line. All donations are tax deductible and will benefit The UAB Pediatric Neuro-Oncology Program at Children’s Hospital. Donations can be sent to Anne Long at 2509 Shades Crest Rd. Birmingham, AL 35216.

Tuesday, September 6, 2005 10:46 PM CDT

Andrew had his last clinic visit for chemo on Wed the 31st. It was a wonderful visit – Andrew had hugs for everyone and was in a really good mood. We just can’t say enough about how great his treatment team has been. The only bit of bad news is that both his red and white counts were a little low. With his party scheduled for Friday this was a bit of a concern. I double checked with Richard, one his nurse practitioners, and he said that Andrew should go, swim and have a great time. And that is just what he did.

The party was great success – there were about 150 people there – kids everywhere, swimming and having fun. We want to thank all of those who were able to come celebrate this wonderful milestone with us. Andrew and Sarah both had lots of fun and were worn out by the time it was over.
We also want to thank all of the people who have done so much to help us during the past 15 months. We have had so much help with meals, babysitting for Sarah and most importantly prayers. Thank you all.

Finally, I want to let everyone know about an upcoming event. The Samford University and University of AL Huntsville softball teams are going to play a benefit softball game in Andrew’s honor on Sunday Oct. 16. All of the proceeds will go to brain tumor research at Children’s Hospital. I will post more details soon. Also, I will update after Andrew’s first post-treatment MRI which is scheduled for Oct. 5th.

Bruce has updated the pictures in the gallery.

As always, thanks for checking on Andrew.

Anne

Friday, August 26, 2005 1:50 PM CDT

Andrew started his 9th and final cycle of chemo on Wed. We went in on Tuesday evening for an MRI – which looked good. It is always a relief to hear that news. We had his labs checked Wed. morning and then saw Dr. Reddy in clinic. She said that everything looked good and we were in a room before lunch. The 9th cycle is the same as cycles 3 and 6. He receives a medicine called cytoxin (that just sounds bad) and it seems to be a little harder on him. He got sick Thursday morning and so they gave him some phenergren? Which caused a reaction. He couldn’t stop rubbing his eyes and said there were “floaty things” in his vision and his legs were having spasms. Fortunately, the medicine put him to sleep pretty quickly and he slept until about noon and felt better when he woke up. We left the hospital about 5:30 Thursday evening – what a great feeling to know that this was his last scheduled hospital visit for chemo and we are hopeful that it will be his last visit ever.

We took today off to rest and at about 9 this morning Andrew asked “why am I not at school?” I offered to check him in but he said that he should probably rest. He has his last clinic visit for chemo next Wed. and then we are looking forward to his pool party on Friday.

On that note we would like to let everyone know about an upcoming party. We are having an “End of Treatment Celebration” to mark the end of Andrew’s treatment. We are having a swim and pizza party on Friday Sept. 2nd from 5:30 to 8:00. It will be at Hoover Country Club. Everyone is welcome, we just ask that you let us know if you are coming and that all kids be chaperoned. You can e-mail us at longbhm@earthlink.net or call us at 979-6917.

Thanks for checking on Andrew.


Anne

Tuesday, August 16, 2005 10:03 PM CDT

Andrew has enjoyed his 3 weeks off and has been feeling well. He did not lose his hair after the last cycle so he has a good 2 months worth of growth. This, along with a good tan, has him looking really healthy. Probably the best he has looked since before his surgery. I took Andrew and Sarah to the beach last week for one last vacation before school started. We stayed with my parents and we had a great time. The weather and the water were great. The only small difficulty was getting down to the beach since the stairs have not been built back yet.

Andrew met his new teacher today. Her name is Mrs. Dennis and Andrew thinks she is great and he can’t wait to get back to school tomorrow. Of course, the highlight of his day was going to visit his kindergarten teacher, Mrs. Pearson, and give her a big hug.

Andrew is scheduled for his last cycle of chemotherapy next week. He has an MRI scheduled for Tues. evening and then he will see Dr. Reddy Wed. morning and if all labs are good he will be admitted for his last “big” chemo. The medicine he will receive is the same as cycles 3 and 6 and seems to be a little harder on him. Hopefully we will be home Thursday night. Andrew then has one more clinic visit for “little” chemo which should be Wed. Aug 31st. AND THAT IS IT!!!!!!!!!!!!!!!!!!!!!!!!! Andrew will be finished with his treatment.

On that note we would like to let everyone know about an upcoming party. We are having an “End of Treatment Celebration” to mark the end of Andrew’s treatment. We are having a swim and pizza party on Friday Sept. 2nd from 5:30 to 8:00. It will be at Hoover Country Club. Everyone is welcome, we just ask that you let us know if you are coming and that all kids be chaperoned. You can e-mail us at longbhm@earthlink.net or call us at 979-6917.

As always, thanks for your continued prayers and support.

Anne

Friday, July 15, 2005 0:03 AM CDT

Andrew started his 8th cycle of chemo on Wed. We arrived at about 8:30 and went to lab – his labs were good. Then we went for a hearing a test. His hearing has not changed since his last admission. He has some high frequency hearing loss but not enough to require hearing aids at this point. We then went back to Clinic and saw Dr. Reddy. She thought he was doing well and she sent us to admitting and we were in our room before noon. He had a good afternoon of watching DVD’s and playing gameboy while getting his chemo. Ashley Thompson and Graham brought us pizza for dinner and Bruce and Sarah also came for the pizza party and had a great time. Thanks to Ashley and Graham. Andrew slept pretty well and was ready to go home as soon as he woke up. Mr. Richard came by at 8am and checked labs which were good and signed his orders to leave and we were home by 10am.

Andrew has really enjoyed his four weeks off which have included two beach trips and being involved with a public service commercial with Miss America for the Curing Childhood Cancer license plates. Charter Cable agreed to shoot the commercial and run it throughout AL. Dan Sims was involved in making this happen and Andrew and several other kids were included. I’m not sure when it will start to air but the Curing Childhood Cancer license plates are a wonderful fund raiser for Children’s Hospital research. We have such a wonderful resource in Children’s Hospital. We cannot say enough about the care and treatment Andrew has received there and we would encourage everyone to consider purchasing a license plate – they are $50 and approx. $42 of that goes directly to Children’s. See the link to Curing Childhood Cancer below. You should have heard me trying to explain the concept of Miss America to Andrew – he understood the concept the license plates as a fundraiser much better!

We spent the week of the 4th at the beach with the Snyders and had a great time. Andrew and Sarah both had so much fun playing on the beach, watching fireworks and eating ribs at Granny and Grandaddy’s beach house. Bruce has posted some new pictures from the trip in the gallery. Thanks to the Snyders and JeJe for a great week at the beach. We arrived home Friday night before hurricane Dennis and it was quite a trip.

Andrew has clinic visits for treatment the next two Wednesday’s and then 3 weeks off before the last cycle of chemo.

As always, thanks to everyone for their continued prayers and support.

Anne

Monday, June 13, 2005 12:14 AM CDT

Well, it has been 1 year since Andrew was diagnosed with a brain tumor. Despite the fact that there have been difficult days and many ups and downs, we can't believe how quickly the time has passed. Andrew has been such a trooper and there have certainly been more good days than bad.

When something this frightening happens to your family you would not necessarily think how lucky, fortunate, and blessed you are - but that is truly how we feel. So many more positive things than negative things have happened to our family this year. Everyone at Children's Hospital has taken such good care of Andrew. Dr. Reddy and nurse practioners Karen and Richard have been so great. It is hard to imagine a better team and there have been many days when I'm not sure we would have made it without Ms. Angela and Clay.

We have also had such wonderful support from family, firends and community thoughout the year with meals, help with Sarah, and prayers. Thankfully, we can now see the light at the end of the tunnel with Andrew's last 2 treatment cycles scheduled for July and August. I do not feel that we can ever repay everyone for everthing that they have done for us but we are so truly thankful to you all.

-- Anne

Thursday, May 26, 2005 10:56 PM CDT

Andrew began his 7th chemo cycle this week. On Tuesday he had his hearing checked and there had not been any more loss since last test. His blood work was good. He went in Wednesday for overnight chemo treatment and that went very well. He never got sick and was home by lunch on Thursday. He played for awhile when he got home and then he went to his room and took a nap till about 10 pm and of course is still up right now. But since the last day of school was Wednesday he can sleep late tomorrow. He was able to go to school for a few hours on Wed. before going to the hospital. Andrew also finished up T-ball season last week and had the end of the season party on Sunday with a T-ball game against all the mothers and that was alot of fun to watch.

I've put some new pictures in the gallery from the May play day at school, some T-ball pictures, and picture from my niece's medical school graduation.

Thanks for checking on us.

-- Bruce

Friday, April 29, 2005 8:59 AM CDT

Andrew started his 6th chemo cycle on Wednesday. We started the day with an MRI of his head. He's always been sedated for those but it takes so long for him to wake up and he feels bad afterwards, so we had been talking to him about doing it without being put to sleep. He said he could do it, but we still had to do the no eating beforehand in case that didn't work and he had to be sedated. If you've seen an MRI machine, you can understand why we were worried about it. Being strapped down to a board and slid into a tube not much bigger than your body and the machine makes all sorts of loud buzzing and clicking sounds isn't much fun no matter how old you are. Miss Angela and Clay talked to him about it and came to the MRI room with us and promised him a surprise if he could do it. He picked me to stay in the MRI room with him and hold onto his foot while he was in the machine and I leaned my head in so he could see me. They do part of the test for about 20 minutes or so and then they pull him out and add contrast fluid to his IV and then put him back in for a few more minutes and I knew when they pulled him out for that he was going to think it was over. Andrew said he didn't want to do anymore and with alot of promising him a surprise, me telling him I would lean it farther and hold his hand and technicians telling him it would only be for "5 minutes", he agreed to "4 more minutes". So hopefully now he will get a little better each time at getting the MRIs since he will still have to get them periodically even after treatment for quite awhile I guess.

After all that, he was starving so we got Burger King and ate at Children's Harbor. This week, Andrew also has his kindergarten class traveling mascot..."Bananas" the monkey. So Anne and Andrew had already been planning on bringing Bananas to the hospital and taking lots of pictures and then I would print them out at home Wed. night and they would make a book out of them during the day Thursday. After lunch we went back to clinic to see Dr. Reddy and she gave Andrew and Bananas a good checkup. She said his MRI was good and clean and she let us go back and see it on the computer and showed us the before surgery one compared to it. We got a room about 3 pm and this time he is getting different drug (cytoxin) which takes about an hour to get and then you have to wait 12 hours and get it again. He did well during the night but in the morning he got sick 4 or 5 times. They gave him nausea medicine and that knocked him out for about 3-4 hours. He felt good at lunch (Happy Meal, of course) and had finished making his "Bananas" book and we got to go home around 4:30 pm Thursday. He felt so good when we were leaving that he insisted on pulling the red wagon with all his stuff on it all the way from the room to the car all by himself. He'll have a clinic visit next week and then two weeks off.

Andrew has been enjoying T-ball season. He doesn't always play the whole game in the field but loves to bat and in the last game he had one of his best ever hits that flew to the outfield and rolled to the fence and he's still talking about that one. Other than this week, Andrew hasn't missed much school either...checked in late or checked out early a few times because he was tired but has been having a good time at school.

I really do have some pictures that I will update tonight because if I don't Anne will strangle me. Thanks to everyone for checking on us.

- Bruce

Monday, April 4, 2005 12:48 AM CDT

Been awhile since I updated, so since then we did go to the beach for a few days. The weather was mostly good except for some strong winds that made it feel cooler than it was. We did alot of playing in the sand and had a good time. His hearing seemed much worse while we were there and when he had his appointment the following Wed the doctor said he had some wax and fluid build-up that might explain it so they gave us some eardrops and it seems like it helped. His 2 doctor appointments after the overnight chemo went good...weight was up a little and they thought he might need blood on the third week, but his counts were still good so he didn't have to get any this round.

Andrew had his first T-ball game after the spring break. That was this past Saturday...the day it was super windy. He batted once and hit it good and ran the bases, but when he came back to the dugout he told me that he didn't feel like playing any more and wanted to go home because he was tired. He does get tired easy now and I think the 40 minutes of running around with his teammates before the game waiting on the previous game to finish was what made him tired. Anyway, he got home and rested and we went to a birthday party later in the day at a laser tag gameroom and he had plenty of energy for that. He loved playing that and I'll admit at the end of the game you get a scorecard of how you did and he had a higher score than me both games...I think he was hiding behind me and using me as a shield.

So we have 3 weeks off...next overnight is April 27th. I've got some pictures to update with but they aren't with me, of course. I'll do that later at home and leave a note on main page when I get them up.

I put a link to Davis Hartsell's web site. Davis is about the same age as Andrew and is currently undergoing a very painful treatment for his type of cancer and has to stay in the hospital for 4-6 weeks. Please pray for Davis and his family.

Thanks,
Bruce

Thursday, March 17, 2005 10:25 AM CST

Andrew started the beginning of his 5th cycle of chemo this week. He had another hearing test Wed and there had been a little more high frequency hearing loss so they were going to cut the dosage of the drug that causes that this time. Doctor had told us about this before so that was normal. Doctor said everything looked good with him and he had even gained some weight, which wasn't surprising the way he's been eating lately. Anne and Andrew got to the room before lunch and I took him a Happy Meal and he ate all of that and then I had to bring him a 10-pack of nuggets for dinner and he ate almost all of that plus some other stuff. We watched The Incredibles and he was having a good time. He stayed up till about 10 or so and then was finally ready to go to sleep and right about then his chemo ended and he had to get up and be weighed and he wasn't happy about getting woke up for that. He went back to sleep, but the aforementioned nuggets made a re-appearance around 3 am. He was sick a few more times but by morning he was resting and feeling better and wanted to go home...right up till Scooby-Doo came on TV then he wanted to stay.

We're headed down to the beach for a few days and Andrew and Sarah are pretty excited about that. They've been wanting to go since the first warm day of the year. I expect alot of digging in the sand and not alot of time in the water. Hopefully I'll get some good pictures to put up next week.

Thanks again to everyone checking on us and praying for Andrew.

-- Bruce

Tuesday, February 22, 2005 12:48 AM CST

Last week Andrew had his last chemo drug for the fourth cycle and that went fine. His red blood counts were a little down...20 is when they give blood and he was 20.4 so they decided to leave his port in and check again on Friday. Friday they were still 20.4 so decided to check them again Monday. Andrew had T-ball practice on Friday and Saturday and had a real good time at both. He was pretty tired Sunday and just rested most of the day. He's also has the stuffy nose/congestion thing going so that or the Sudafed might have him a little down too. Monday his red blood count was 19.6 (his white blood count was good though) so he needed to get some blood. The new clinic 8 has a great new room for everyone getting blood or whatever...it's like being in first class on a plane. Everyone has a big recliner with their own TV/VCR/DVD/GameCube and a good library of stuff to watch. It was about noon before they hooked up the blood and it took about 4 hours to get in. That translated into 2 Scooby-Doo movies, Home Alone 2 (just the funny parts), and some Galaga and Dig Dug. He seem to feel better when we left and he played outside a little when we got home. He was tired again Monday night though and complained of headache (symptom of low count) and napped for awhile. Then woke up and wanted a bath and then after that some soup so of course he was really late going to bed and we decided to let him sleep in and miss school. He's feeling better today except for being real congested, so hopefully he can get over that soon and enjoy the 3 weeks off from treatment.

Friday, February 4, 2005 9:45 AM CST

Since Andrew's last treatment was a different drug it was 2 weeks on and 2 weeks off, he had his first treatment of the 4th cycle this past Wednesday. This cycle is like first 2 cycles...1 overnight plus 2 clinic treatments and then 3 weeks off. Everything went well this time. His lab work Wed morning came back good, then he got a hearing test. His hearing has improved since last test which was before he got the tubes put in his ears. He still has a little high-frequency loss but nothing in the normal speech range. Anne & I said before the test we had not noticed him saying "What" as much as he used to. We got back to clinic and got port accessed and got a room not long after that. He got his medicine thru port from afternoon thru evening and didn't have any problems. We watched alot of cartoons and played GameBoy and he slept as good as you can sleep with someone coming to take your vital signs every few hours. He thought he was going to be sick once Thursday morning but never really did...which is exactly what happend first two cycles with these drugs. He got fluids and some nausea medicine and we got out by lunch. He rested most of the day but was back playing almost normal by evening. He might have stayed home this morning but they were making some kind of dragon at school and he didn't want to miss that and his doctors say as long as his counts are good and nobody around him is sick let him go.


I did update the pictures in his gallery. Thanks to everyone for their support.

-- Bruce

Friday, January 7, 2005 8:47 AM CST

We had a good time during the holidays. The extra two week break from treatment had Andrew feeling good and even his hair grew back quite a bit. Anne can't stop rubbing his fuzz head, but I'm guessing starting treatment will make it fall out again. The kids got more toys than they know what to do with and of course when we got to the hospital Wed. the nurses asks "What did Santa bring you?"..."I don't remember"...so I prompted him with "How about some of the stuff all over the den floor?" and that got him going down the list of stuff and they got a full infomercial about Imagenext Pirates from him.

We went to hospital on Wed. for MRI and to start 3rd cycle of chemo. His weight was we think about what it was before holidays...which is hard to believe with the amount of stuff (especially chocolate) that he ate, but at least it's holding steady. He got his port accessed and then he had to be sedated for the MRI and he was real sleepy after that. The doctors said the MRI was clean and everything looked good and his lab work was good so then we got a room (possibly the smallest room I've ever seen...I think it was a closet with a bed in it). Anyway, he was getting some different drugs than last 2 times so he got chemo from around 7-8pm and then has to wait at least 12 hours and get it again. Andrew thought he was going to be sick once during the night and once in the morning but didn't really. They gave some nausea medicine and that made him sleep good bit of Thursday morning. He got the second round of drugs around 1pm. When I left Thursday morning he told me he wanted a Happy Meal for lunch and Anne called me while I was on the way to McDonald's to say he had just gotten sick but he still wanted the Happy Meal. Can't say that I've ever thrown-up and then thought about having McDonald's (whole new ad campaign) but I got it and not only did he eat it all he wanted another one. We got him to eat other things instead but when we finally got released about 7:30pm we stopped and got a "Mighty" Happy Meal and he ate the whole thing and slept good last night and he stayed home from school today so he could rest. His class made him cards again and he looked at all of them before he went to bed and I think he read all the names right on them...thanks to all his classmates.

Overall everything went very well again, but Andrew had been expecting to go home Thursday morning like we had before so the hardest part was telling him "just a few more hours". He'll have clinic visits next 2 Wednesdays and then 3 weeks off. I'll put some new pictures from the holidays in gallery this weekend.

Thanks to everyone for their support and prayers.

- Bruce

Sunday, December 19, 2004 10:10 PM CST

Time has been flying by and I hadn't realized it had been so long since I updated the site. But the good news is that Andrew has been doing good and we have been on a break from chemo and won't start back till Jan. 5th. Andrew had tubes put in his ears last week and that went fine and he only complained about them for a few hours after the surgery. Doctor said his ears looked irrated and had fluid in them and he got that out and said they should feel better. I think the other reason for the tubes is to lessen the chance of an ear infection which could prevent getting treatment.

We celebrated Andrew's 6th birthday yesterday (real birthday is 22nd) with a bowling party and we all had a great time. Since last update we also had Sarah's 4th birthday (Dec. 1st) so December is a party and present month. The questions about Santa have really been picking up from both the kids...Is the Santa at Brookwood the real Santa? Where are the elves? Where's his sleigh? How can he really see what we are doing at home? What if we stay up all night and wait for Santa? I'll put a couple of new pictures in gallery and I probably won't update again till after his Jan. 5th treatment.

We also found out that the bazaar held at our church last month raised $5000 for cancer research at Children's Hospital so a big thanks again to all who participated in that.

We'd like to wish everyone a very Merry Christmas and a Happy New Year and to thank everyone for their support during the past year and your continued support in '05.


-- Bruce

Friday, November 12, 2004 12:21 AM CST

Just a quick update to let everyone know that Andrew's treatment went very well this week. They checked his blood first and made sure all his counts were good enough to get his chemo and they were. His weight was about the same as last two times so he is at least maintaining and not losing. He got his hearing checked and it showed some loss (one ear more than the other) and fluid in both ears so we had to see an ENT and he sucked some of the fluid out (Andrew was not pleased with that procedure) and put him on antibiotic and ear drops and will check him again next week. He got his chemo drugs thru his port during the night Wed (takes about 6 hours for that). Anne's mother brought Sarah for a visit Wed night and she brought him an Auburn football balloon and he liked that. His class had all made him get well cards and sent those too. He looked thru all of them and would say very positively "this one is from so-and-so"...he got most right. He said he felt sick a couple of times during the night but never did get sick and slept very good most all night. He felt good in the morning and his lab work came back good so we got out of there around 10am. He was tired Thursday night and went to bed early but was ready for school on Friday.

Also, we wanted to say thanks to all the volunteers that worked on the bazaar held at the church on Tuesday. The early report is that it was very successful and as soon as we get the final total on how much was raised to go to Children's hospital we will pass that along.

-- Bruce

Wednesday, November 3, 2004 9:18 AM CST

Well we are almost at the end of our three week break and everything has gone very well. He knows next week is an overnight visit to hospital to get his chemo drugs and he seems OK with it. Andrew has been eating pretty good...not sure he's actually gained any weight but hasn't lost any either. He had a real good time at a birthday party at SportsBlast playing soccer with all the kids. He still gets tired pretty quick but he did alot of running there which was good. We went to see Shark Tale last Friday and he liked that (Sarah ate a sucker, popcorn and then had Anne take her home halfway thru the movie so she could lay on the couch). School has been going good, he had a good time at the fall carnival at East. Andrew and Sarah had a good time during Halloween as you can see from the new pictures I've added. Andrew hasn't been eating that much candy, but don't worry Sarah has picked up the slack for him so we should get that candy cleared out soon.

We also want to let everyone know about a fund-raiser that our church is putting on in Andrew's honor to benefit cancer research. It's the 6th annual Magical Marketplace Bazaar held on Tuesday, November 9th from 10am-2pm at Vestavia Hills United Methodist Church. All the proceeds will be going to the Pediatric Neuro-Oncology Department at Children's Hospital. They will have 60 vendors there selling things like pottery, jewelry, baby gifts, and handbags. Also, there will be a bake sale to benefit the Janie Sims Foundation. So if you have a chance please stop by and check it out. Thanks to all our friends at the church who've worked on the bazaar.

--Bruce

Friday, October 15, 2004 0:13 AM CDT

I finally uploaded the pictures from the Auburn trip so please check them out.

Andrew had third chemo on Wednesday and that went good. He had actually gained a little bit of weight back, although he still looks real skinny to us. Now he has three weeks off with no appointments. Hearing that always makes Andrew happy. He's been going to school every day except for the treatment days and has been having a good time there.

-- Bruce

Friday, October 1, 2004 8:30 AM CDT

Well our hospital stay went well Wed-Thurs. We got there around 8am and got his port accessed (normal screaming on that) and then he got sedated around 10am for an MRI of his head. We went back to clinic 5 after that he slept in the waiting room for couple of hours. When we saw the doctor she said the MRI results were good...no sign of anything and healing very good. We had been told that it would be very rare to have re-occurrence during treatment but it's always good to hear positive results. Then we had to get admitted to hospital to do the chemo drugs thru IV. We must have waited 2 hours of so in the lobby for a room to be ready. Luckily, Andrew had a new ScoobyDoo game for his GameBoy and played that while laying in a wagon. When we got to the room they started some fluids thru IV and gave him medicine to prevent nausea and around 8pm or so they started the drugs. We watched a movie and played more GameBoy and then he said he wanted to rest and pretty much ended up sleeping all night (Anne and I can't say the same thanks to the medival foldout chairs). He felt fine in the morning and doctors checked all his lab work and said we could go home and we got back home around 11am Thursday. The doctors said if he felt good to let him go to school so he still felt fine Friday so he went. All in all, a good first chemo visit. Next week is just a clinic visit to get one drug that he was getting during radiation.

Last weekend, we did make it to the Auburn game and had a good time. Some friends had given Andrew and Sarah #24 football jerseys on Friday and they wore those to the game and then when we got there they got some AU tatooes on so they had their game faces on. Andrew had a good time riding there and then playing the games at the coliseum before the game but then he started to get tired. We rested before the game but I still had to carry him up the ramp to the upper deck. We left during the second quarter but that wasn't unexpected. Andrew was tired and hot, but Sarah was exhausted and cranky because she had not slept much the night before because she was too excited about going to Auburn and her "Cadillac" jersey (which she has worn every day since). With them both so tired, it deteriorated into alot of whining and complaining until they fell asleep. Then the next day both of them were going on about what a great time and when can we go again. A big thanks to all our friends who got us tickets, gave the kids jerseys, got us a great parking pass, and let us hang out at their RV.

I'll put some updated pictures on web site this weekend so check back for that. As always, thanks to everyone for their thoughts, prayers, calls, gifts, babysitting, cards, letters, e-mails, meals, and support...it really means alot to us all.

-- Bruce

Monday, September 13, 2004 10:13 AM CDT

Sorry I haven't updated site lately, but things have been pretty normal lately. Andrew is doing real good during this break time. The area on his head and ears where radiation went it are gradually returning to normal and not itching much. Appetite has returned and at times he is the "food hog" that we know. We got in bed one night and said he was still hungry and wanted a hotdog...ok with me, so he got a hotdog in bed. He's been doing good at school too. First days were a little rough but since then he seems to really like it. He's usually pretty tired after a full day of school so snacks, cartoons, and couch usually follow. We had a nice visit to Huntsville during Labor Day to visit my family. Our beach trip is a little up in the air thanks to "Ivan" so we'll have to wait and see about that. Sept. 29 will be a big day...lab work, MRI, and overnight stay for chemo. Until then we'll just try to keep eating good and having fun.

Thanks to everyone,
Bruce

Wednesday, August 25, 2004 11:21 PM CDT

Everything is still going good. We had the normal fit on Monday morning for port access and radiation has gone well all week. They are just radiating the tumor bed now so it is very quick and they don't use much sedation so he wakes up real quick. And that is good because school started last week for half days and this week for full days. He gets there a little late and fusses about going but Anne says he is always happy and says he had a good time when she picks him up so that is a good thing. Today was clinic day and that went well. Friday is last day of radiation and we'll have 4 whole weeks with no doctor appointments! We'll try to get a beach trip in and maybe an AU football game before the chemo portion of treatment begins. Andrew is still getting tired quick but he seems to be eating a little better. And the little bit of hair that didn't fall out seems to be growing.

I put one new picture on gallery of Andrew with his buddy Clay. Ms. Angela and Clay come to visit kids at Children's and keep them amused while they are waiting for treatment.

Thanks for all the good messages and get well wishes.

Later,
Bruce

Tuesday, August 10, 2004 10:05 PM CDT

I've put some new photos on the gallery page.

We had a good time at the lake this past weekend. Andrew loved riding on the pontoon boat, riding on the wave runner, and doing cannonballs off the dock. He's getting tired quicker than he used to be and took a nice nap while riding on the boat. Either his appetite is just way down or stuff is not tasting good, because it's becoming a challenge to get him to eat sometimes.

His Monday port access went like normal with alot of screaming but he got over it real quick when nurse gave him some stickers. And radiation has gone well this week. They had finished with radiation to spine last Friday so we didn't have to worry about washing all the marks he's had on his back off, which was good because they all got washed off in the lake.

Sarah has gone to spend week at the beach with Anne's mother and Andrew says he will miss her a "little" (fingers about 1/2 inch apart) bit. And big school (kindergarten) will start for Andrew on Monday. He's going to be a little late getting there for first couple of weeks, but he's excited about it.

Thanks again for all the thoughts, prayers, and messages.

-- Bruce

Friday, August 6, 2004 11:03 AM CDT

Just a quick update to left everyone know how much we've enjoyed reading the messages in the guestbook.

Andrew is still doing real good. His hair started coming out a little on Monday and by Wednesday it was coming out in handfulls. We took him to get a haircut to get it cut real short so it wouldn't be so bad coming out. Now on Friday he just has a little bit of hair left...kind of like a peach. It doesn't seem to bother him though. He has gotten better and better at radiation and just walks right in lets me hold him while they sedate him. When they do it he tastes something bad and doesn't like it but he goes out so quickly he doesn't complain long. His appetite isn't quite what it was before treatment began and he's probably lost a couple of pounds.

Overall, his mood is still pretty good. He doesn't like the port accessing on Monday mornings (I don't think the nurses are enjoying the screaming either), doesn't like the feeling of waking up after sedation each morning. He's still been able to play good (seems to get a little tired quicker) and we went swimming last Sunday and he really like that and this weekend we are going to a lakehouse with friends and he's very excited about that and was ready to go right after treatment Friday morning. I'll try to get a few pictures over the weekend and put them here next week.

Tuesday, July 27, 2004 10:59 PM CDT

I was a little late getting to setting up this web page so we can keep everyone updated with Andrew's progress, so I'll give a quick summary of what has happened so far.

Andrew had been having a few minor problems with vision and headaches in April/May and pediatrician thought he probably needed glasses. Eye exam did not show any problems and day after exam he mentioned he was seeing two of everything and that's why he closed his left eye. About the same time his balance started getting unsteady. We got an appointment for CT-scan on Wednesday 6/16 and they immediately said he had a tumor and would need surgery to remove it.

We met with pediatric neurosurgeon, Dr. Oakes, at Children's Hospital on Thursday and he showed us CT-scan with tumor in the cerebellum which was about 4cm x 2cm and how the tumor was also causing fluid on the brain because it was blocking flow. He could not tell us what kind of tumor it was but went over the most likely ones and what each one would mean for his future. He had to have an MRI of head on Friday which required an IV in the hand so they could sedate him and he has hated seeing anybody with a needle since.

Surgery was Monday morning 6/21 and lasted a little over 4 hours. He was finally somewhat awake and in ICU around 2pm and looked amazingly well for what he had been through. They only shaved a strip of hair up the back of his head for the incisions and they kept warning us that his face could swell up or look bruised but it never did. The ICU visiting hours were about every 2 hours for 2 hours. We had alot of family and friends come by and visit and keep us company and we are very grateful to all of them.

On Tuesday he had an MRI of his head to make sure all of tumor had been removed and that came back clean. We got out of ICU to a room around 9 pm Tuesday and sleeping on pull-out chairs is way better than the waiting room chairs. Wed and Thursday Andrew was gradually moving around and becoming annoyed with everything about being in the hospital. His cousin Clarke paid him a visit and got him to laugh till it hurt (something about calling everything in the room a "rat").

We got to go home Friday around lunch and right before we were to leave Dr. Oakes came by with the pathology on his tumor which we didn't think we would get till the next week. Anne and I didn't know the medical names for tumors but were hoping whatever it was could be cured by surgery alone. He told us that the tumor was called medulloblastoma and that was a malignant type and would require radiation and chemo treatment to prevent it from coming back. Shortly after that the pediatric neuro-oncologist, Dr. Reddy, came by to meet us and give us some more information about his treatment. We were very sad to hear our little boy was going to have to go thru so much more pain and all of the possible side-effects that the treatment will cause him. Andrew was very happy to finally be home and I think in his mind he thought he would be done with doctors and hospitals. He was sore and still had to have someone hold on to him to walk and was having trouble using his right arm and hand. The Gameboy he got as a gift while in the hospital started really getting played alot during the weekend and helped him pass the time while laying around.

The following Tuesday 6/29 he had to have an MRI of his spine to make sure that none of the tumor had spread there and we got result that night that it came back clean. On Friday 7/02 he had to have day surgery to put a "port" in his right side which is like a permanent IV under the skin which is used to deliver all his medications over the coming year and half. They also did a spinal tap at the same time to check for presence of any tumor in spinal fluid and that came back clean as well. Having the tumor totally removed and finding no evidence of it spreading means he falls into the "standard-risk" category and his treatment plan would be one that has been used successfully for number of years. It will end up taking about 15 months for full treatment. We are lucky to live in Birmingham with some of the best medical resources within 15 minutes.

Andrew started radiation treatments on July 19th. We go to that every weekday morning for 6 weeks around 7:30 am at UAB (his radiation oncologist there is Dr. Russo). Monday's are bad because we have to stop by hospital first and have his port "accessed", which means sticking a special needle in his side into the port under the skin and that connects to IV that he keeps in all week and gets out on Friday. We put some numbing cream on it before they do it but you wouldn't know it helps by all the screaming. So far we are 2 for 2 with us having to hold him while nurse puts it in. They have to sedate him at radiation so he doesn't move during treatment and he doesn't like that either. One day a week during radiation he gets one chemo drug. He's had a few side effects from treatment but nothing too bad and overall he has bounced back very well from the surgeries and the first week of treatment.

Anne and I want to express our thanks to all those who have sent gifts, food, cards, e-mails, phoned, stopped by, babysat Sarah, and said prayers. We can't thank everyone enough for making a very difficult time much easier to deal with. I'll try to update this web site weekly or so with status of treatment or just what we've been doing and I'll switch out the pictures occassionally as well.

-- Bruce

Monday, July 26, 2004 12:19 AM CDT

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