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Sunday, September 30, 2007
Beau Goes HomePraise the Lord Beau went home today!! Beau finished
his last chemo treatment yesterday afternoon. They thought he was going to have to have a blood transfusion today so
they kept him over night. He had a quiet day yesterday. He and mommy went to the playroom and late yesterday afternoon
down to the gift shop to get some candy. Grammy stopped by for a few minutes to give Beau some camouflage tennis shoes so
I went with them to the gift shop. Mommy got something to eat at the snack bar while we waited in the lobby. He
did fine last night and this morning his counts were good so he didn't have to have a blood transfusion. They will
go into the clinic on Tuesday to get his counts checked. The last time they had dropped by the 3rd day after chemo so
we'll see how they do this time. We pray he won't get any infections so he will be able to stay home the next
couple of weeks. When they got in the car to leave today, the first thing Beau said was go play golf so mommy called
Grandad Miller and he said come on down to the river and we'll go. So they were heading the river for an afternoon
of golf and riding in the golf cart. If his counts drop like the did the last time, he won't be able to do much
the rest of the week so they wanted to enjoy this afternoon. Though you
have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible
and glorious joy, for you are receiving the goal of your faith, the salvation of your souls. -- 1 Peter 1:8-9
In a few weeks Beau will be in Chapel Hill for his first stem cell transplant. We can't
see what the chemo is doing in his body but we believe and have faith that it is killing the tumors so when he does go to
Chapel Hill they will be gone and the mega mega chemo can do it's work and the stem cell transplant can go to town and
do its work. God is working in Beau's body even though we can't see what is going one. We believe and
trust in God and know he is taking care of Beau. God is in control and everything is in His time not ours. Please
pray this round of chemo kills off the remaining tumors. Pray Beau will eat more while he is home and that the
TPN will continue to nourish him and help him get strong and gain weight. Pray Beau, Mommy and Daddy will
get good rest while at home. Pray God continues to use Beau to touch the lives of everyone that comes in contact with
him. Thank you so much for your continued prayers, love and concern. God Bless!!
Love, Grammy
8:00 pm
Friday, September 28, 2007
Beau Goes RidingGood evening!! Beau threw up again some last night
and his little belly was kind of tight so they decided to do an xray on his belly again last night. It was about 1 am
before they came to the room and got it done. He finally got to sleep and was OK the rest of the night. He and
mommy slept in late. The nurses and doctors are so good to let them sleep like that. Grammy and Kayla got there
about 10 and he was ready to go play. His counts were good today so we took him riding in the wagon and ended up at
KFC. Here we go down the side walk Grammy pulling the wagon and mommy walking along side pushing the IV pole - yes we
had to take it with us. Kayla was all over the place running then walking. We made a stop at the front of the
hospital for mommy to get some pops & tootsie rolls from the gift shop. While we were waiting on mommy a nice lady
came along and talked to Beau and inquired about him. Her husband had cancer of the kidney and had surgery this week.
Everyone we passed spoke to Beau and said how cute he was riding in his wagon. Grammy and Beau waited outside KFC in the shade
while mommy and Kayla went in to get lunch. A very nice lady stopped on her way into KFC and started talking to us.
She asked about Beau and I explained what was wrong with him. She leaned over put her hand on his head and starting
praying for him. She prayed that he would be healed and be a testimony to God's healing power and that God would use him
to be a testimony for Him. She also laid hands on his legs and prayed that he would grow strong. She told us about
her grandchildren and showed us pictures. It was quite a walk today. We are always blessed when we go walking.
We also saw the East Care helicopter coming in for a landing on the hospital roof while we were waiting. Beau was very
excited about that. He was really tired when we got back to the room and had a 2 yr old tantrum to sit on mommy's
lap. Jen got him situated on her lap with a pillow and he laid there while we ate. She got him situated in bed
for a nap and Kayla and I left. Jen said he had a good nap this afternoon. I talked to her a few minutes ago and
she said he was doing well. They had been watching a movie. Mike the assistant nurse manager came in and told
her 4 people called him today saying they saw two women pulling a child in a wagon with an IV pole and bags. He figured
it was us since he knew we had gone out and told them it was ok we had permission to be outside. We actually were on
hospital property the whole time until we crossed the street to KFC. It gave us a good laugh, He finishes up his chemo
tomorrow so we hope he will be able to go home tomorrow afternoon late or at least by Sunday. Psalm
27:1 The Lord is my light and my salvation—whom shall I fear? The Lord
is the stronghold of my life—of whom shall I be afraid? This week Jennifer put together
some information (see below) on neuroblastoma for something we were working on. She made this list of all that Beau
has been thru in the last 10 months. He receives a bead of courage every time he has a procedure done or is in the hospital,
etc. that is how she had these figures. Look at what our little warrior has endured and tell me what you have to be afraid
of? All the kids with neuroblastoma face these things every day and it can go on for years. Please pray that the
Loneliest Road Campaign will raise the money for research and for the antibody. Pray that Congress will past the Childhood
Cancer bill. So much more money is needed. Pray for Beau and all the kids who have neuroblastoma and other childhood
cancers. And, thank God your children, grandchildren, nieces and nephews are healthy. God Bless!
1 Biopsy of the tumor 4 Bone marrow biopsies 12 Rounds of chemo 2 Hickman catheters placed 2 Central lines placed and removed 3 A-lines placed and removed 6 Ports placed for Neupogen shots 22 Visits to the clinic 1 Visit to the ED 1 Visit to the night clinic 48 Days with fever, being neutropenic or being on isolation Has lost all his hair on his head, eyelashes and eyebrows 10 days on morphine for pain 4 days with an epidural for pain Stuck 19 times for IV or blood draws 2 Ultrasounds 15 X-rays
1 Bone scan 1 Skeletal scan 2
Hearing test 1 Dental exam 9 CT scans 4 MIBG scans 2
EKGs 3 ECHOS 23 Blood/platelet transfusions 2 Chest tubes placed 3 NG tubes placed 3 Foley catheters placed Dressing on Hickman catheter changed 75 times Sedated for procedures 13 times 7 days in the Pediatric ICU 126 Days in the hospital 1 day of stem cells being harvested 66 days on TPN (Nutrition through IV) 2 Major Surgeries – 1st surgery 10 hours, 2nd surgery 8
hours Left Kidney removed 12 inches of colon removed This is just what has Beau has been through in the last
10 months and he has many more months if not years to go. Some kids have been fighting for many years and have relapsed many times!
8:48 pm
Thursday, September 27, 2007
Beau Has Quiet DayGood evening all! Beau had a
pretty good night last night and a good day today. He slept better last night (still wearing his crocs). Jen said
he had some loose stools - chemo stools as she calls them. He seems to be tolerating his chemo ok. He's receiving
fluids, TPN and some other meds. He did sweat a lot last night so we changed his bed this morning and he put on some nice
fresh clothes. He went to the playroom again today. Mommy had some work she had to get done at home so Ma came
and spent most of the day with Beau. When I talked to Jen this afternoon she said Beau had spent most of his time with
Ma sitting on her lap. Kayla is going with me to the hospital tomorrow morning. She hasn't seen him since
last Friday. If Beau is ok and the weather is fine, we're going to take him on a wagon ride. 1
Samuel 2:1 My heart rejoices in the Lord... Waiting is one of the hardest things we have to do,
especially when we've prayed and time is flying by and we don't see fulfillment of our dreams, hopes and prayers.
But God is in control. God is listening to our prayers. We must concentrate on God. God is enough. We must
wait for the Lord. His timing is perfect. Please continue to pray that Beau will eat more. He did drink
some pediasure today. He needs to gain some more weight and get strong before he goes to Chapel Hill. Pray the
chemo is flowing thru his body killing off the tumors and neuroblastoma cells lurking there. Pray he will tolerate the
chemo well and doesn't get infections this time. Also, please pray for the dads riding in the Loneliest Road Campaign.
They are supposed to arrive in Washington, DC on Saturday. Please pray the donations will flow in like a river rushing
to the sea and that they will exceed their goal. Last report showed they had a long way to go to get there. This
money is desperately needed and could save not only their children's lives but many others. And, as always, thank
you so much for your prayers and messages. They mean so much. God Bless!!
Love, Grammy
9:13 pm
Wednesday, September 26, 2007
Beau Went to the PlayroomHello all! Beau had a restless night last night.
He threw up some and just wasn't sleeping well. He finally had a huge poopy so hopefully that will help his tummy.
He has not had any fever since early yesterday; therefore, they could start his chemo today. They slept until late this
morning and Beau actually let mommy get in the shower before Grammy got back. He received a blood transfusion this afternoon
and once that was finished he received some antibiotics and then his chemo. He'll receive chemo thru Saturday.
Beau was able to go to the playroom this afternoon and again this evening. Mommy said he wouldn't get down and play
so they watch a Barney show. At least he was able to get out of the room and enjoy being around other kids. As
I told you yesterday, Beau had to put on his camouflage cros before we went down to xray yesterday. Well, he hasn't taken
them off since. He won't let them take them off. So far, Jen hasn't pushed the issue. She thinks it is
a control thing. There isn't much he can control but that is the one thing he can control. He'll have
to take them off when he gets a bath but I'm sure it won't be without a fight. He is talking a lot more
but you have to tell him to take out his pappy so you can understand. It is amazing how quickly you can learn "pappy
talk". He continues to be a real trooper and our little warrior. When I talked to Jen a few minutes ago, he
was finally drinking some pediasure. He hasn't eaten much in the last few days but they continue to give him his
TPN each night. Be joyful always; pray continually; give thanks in all circumstances, for this
is God's will for you in Christ Jesus. 1 Thessalonians 5:16-18 "Be joyful
always" You might say how can you be joyful under the circumstances. Why not be joyful? Beau is here,
he has been such a blessing to so many, he brings such joy to all his family, he's sweet (most of the time), he makes
us laugh (his 2 yr old tantrums can be funny at times), he has shown such courage and strength and determination and he's
only 2 yrs old. We have so much to be thankful for. We give thanks in the good as well as the trying times.
This is God's will for us. He has taken an unfortunate circumstances and is using it to His
glory. We must continue to have faith and trust in God. We believe God will heal Beau but it will be in His
time and in His way. There are so many kids out there fighting childhood cancer. Kids that spend more time in
the hospital than they do at home. But, if you go to their websites and read their updates you will see that they are
all warriors, that they are all strong and determined. And, the one thing I have noticed is all these families rely
on their faith in God and in all the prayers of so many. Please pray that Beau will tolerate this round of chemo and
that it will kill off the tumors. Pray he doesn't get any infections and that his health will be good and he will
be able to spend sometime at home before he goes to Chapel Hill. Thank you all for your prayers, messages and calls.
They keep Jen and Parham going. There are so many wonderful people out there. God Bless!!
Love Grammy
7:53 pm
Tuesday, September 25, 2007
Beau's Has a I Want Mommy DayGood evening!! Beau had some fever last night and was
breathing heavy - Jen says he normally does when he has a fever - so they took an X-ray - we assume to make sure he wasn't
getting something. Everything was fine. They did culture his blood to see if anything was growing that would cause
fever. Those results won't be back for a few days. Early this morning he threw up twice. It was bile
since he really hadn't eaten much. He kept saying his tummy hurt. He had a small bowel movement yesterday
but it wasn't much and they weren't sure if he was constipated. To be on the safe side they decided to get an x-ray
of his belly. All this was taking place just as Grammy got there. Jennifer hurried to get in the shower but within
in minutes there they were at the door. Grammy went to x-ray with him - he wasn't happy but he was ok
once we got away from his room. He was such a big boy when they did his x-rays. Beau had to have his shoes on
before he left the room so we put on his camouflage cros. The x-ray techs gave Grammy a camouflage apron to wear
so I could stand beside of Beau when he got his x-rays. When they were finished, they gave him a Beanie Baby - Spooky
for Halloween - and some stickers. He promptly but three stickers on his gown. HE had a nice ride (took him in
the wagon) back to the room and Mommy got him settle into the bed. The belly x-rays were fine. He must just
have a touch of a bug or cold. He wanted Mommy to sit right there in the bed and hold him all day so that is exactly what
she has done. Her back is hurting now from sitting there all day. Now
to Him who is able to do far more abundantly beyond all that we ask or think.” Ephesians 3:20a
God
can do so much more than we could ever imagine or think or ask for. He knows how much we love Beau and how it hurts
us all to see him sick after all He watch his son go thru h---. Beau has not felt up to par today. He's wanted
the comfort of his mommy holding him and loving all day. What he didn't realize was God was holding both of them close
in His arms all day. Please pray they have a restful night tonight, that he won't have any more fever, that he won't
be sick on his tummy and whatever is bothering him will be gone tomorrow. Please pray for Jennifer that she will rest
well tonight and her back won't hurt her tomorrow. Pray for Parham as he works hard tomorrow even though he would
rather be with Jennifer and Beau. Please pray for the dads on the Loneliest Road Campaign. They only have a few
days left and we pray for their safety as they come to the end of their journey. We pray they will exceed their goal
of raising 3-5 million for neuroblastoma and the antibody 3f8. These dads have put everything on the line for their
children. But, you know what God did the very same thing!!! God Bless and have a good evening!
Love, Grammy
8:34 pm
Monday, September 24, 2007
Beau's Back at the HospitalGood evening all! Beau had a busy weekend. He
spent time with Daddy Saturday afternoon at the hunting club rounding up the dogs Daddy had taken early that morning to run.
He got to give Peanut one of the hunting dogs a cookie. Yesterday they went to the river and spent sometime at
Grandad/Grandma Millers house. Jennifer said she noticed he didn't seem quite as chipper yesterday as he had
the last few days. He woke up early this morning saying his tummy hurt and had a fever slightly over 100. They went
on to clinic as planned and his white count was slightly elevated. They went ahead and admitted him back into the hospital
but decided to monitor him for the remainder of the day and not start his chemo as originally planned. He never had
a bowel movement yesterday and he's had a slight runny nose. He wanted bananas and cereal so Grammy went to the cafeteria
and got some for him. He didn't eat anything. His fever was slightly over 100 late this afternoon so they
cultured his blood. We aren't sure if they will start chemo or not tomorrow. I guess it depends on his fever
and white count. He slept a good nap this afternoon and was acting ok when I talked to Jen a couple of hours ago. "Ask and it will be given to you; seek and you will find; knock and the
door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened."
Matthew 7:7-8, Beau had a good weekend and got to do some fun things.
He's hit a little bump in the road with the fever but it's only a little bump. Please pray that the fever goes
down tonight and stays down and they won't find any infection in his blood. Pray he will eat and continue to gain
weight. We want him to be able to go ahead with his chemo so he can stay on schedule plus we don't want him off
chemo long because of the aggressiveness of his neuroblastoma. Please pray he has a good week. Also, please continue
to pray for mommy and daddy as well. Prayers have kept him strong and will continue to do so. Prayers keep this
family going daily. Thanks for all the daily prayers!! They mean so much. God Bless!
Love, Grammy
7:25 pm
Saturday, September 22, 2007
Beau's Bone Marrow is CleanPraise the Lord Beau's bone marrow is clean. Jennifer
talked to Dr. Grossi late yesterday afternoon and the bone marrow biopsy showed that Beau's bone marrow was clean of neuroblastoma
cells so the mega chemo did it's job. The MIGB did not show anything different than the CT scan so no tumors were
hiding anywhere. The tumors had shrunk and there was some dead tissue. Dr. Grossi sent the results to Dr. Gilman
in Chapel Hill and they decided that Beau would have one more round of MEGA chemo here then would go to Chapel Hill 3-4 weeks
later to start the stem cell transplant process. We are so thankful that this round of chemo worked so well and did
what we had hoped it would. Beau continues to receive his TPN, antibiotics and several other drugs while at home.
He's eating ok and whatever he wants they let him have. Beau has been enjoying his time at home and has been able
to do some fun things. Mommy, Grammy, Kayla and Beau stopped by to see Auntie Julie yesterday afternoon at her new office
(she works for a doctor). They were still moving in but we got a tour of the office. They had some Baskin Robbins ice
so Beau and Kayla got a few scoops each. Before it was over with they both had chocolate on their faces but they looked
so cute. Then Mommy, Grammy, Kayla and Beau went to the JH Rose High School homecoming parade yesterday afternoon.
The kids had fun watching all the cars go by until the parade started. Beau was waving at everyone. Of course,
as with all parades, there was candy thrown out and before it was over with we had quite a stash in the wagon. Beau
fell asleep on the way home. Jen said he had a good night last night and today he was going with Daddy to the hunting
club to pick up the dogs Daddy took early this morning. Mommy was taking a much well deserved break to go scrap book
with Auntie Kelly and some friends. Blessed are the people of whom this is true; blessed are the
people whose God is the LORD. Psalm 144:15 We have been so blessed over the last
few weeks especially this week with Beau's test results. He has done so well because of the continued prayers of
so many. We know we have some tough days ahead but God is in control and God will take care of our little warrior.
Please continue to pray the chemo does its job and kills the tumors. Pray Beau continues to eat well this weekend so
he can continue to gain weight and be ready for the next round of chemo. Pray for continued grace and mercy for Jennifer
and Parham as they mean the challenges ahead. And, thanks so much for all the continue prayers for our little warrior.
They are greatly appreciated!! God Bless!
Love, Grammy
4:50 pm
Thursday, September 20, 2007
Beau's CT ScanGood morning all! We don't have all the details
of Beau's CT scan but Jennifer did find out late last night that the preliminary results show NO NEW GROWTH. The
tumors had shrunk but we don't know how much and some of the tissue was dead. She should find out the specifics
today. We think it will be several days before the bone marrow biopsy comes back. He will have the second MIGB scan this morning.
They are supposed to come get him at 8 am. Grammy got there at 7 am again so mommy could get her shower. Beau
doesn't like for her to get up. She told him she was going to the bathroom and he was ok with that but when he heard
the shower going it made him mad. He knew she wasn't getting back in bed. I kept talking to him and he finally
got interested in his IV machine and stopped fussing. He even waved a big wave to me when I left. I guess he was glad
to see me go because that meant mommy wasn't going anywhere. Jen will find out this morning if they will be able
to go home for a few days. I think they really need that time at home. He is everything
“The
life I live in the body, I live by faith in the Son of God, who loved me and
gave himself for me.” Galatians 2:20
(NIV)
We live each day by faith trusting
in God and his love for us. He has been faithful and continues to love and take care of Beau and his family. Pray
for good results for the details of Beau's CT scan as well as his other two tests. I will update later today when
we know more. Have a blessed day today!!
Love, Grammy
We live each day by faith trusting in God and his love
for us. He has been faithful and continues to love and take care of Beau and his family. Pray for good results
for the details of Beau's CT scan as well as his other two tests. I will update later today when we know more.
Have a blessed day today!!
Love, Grammy
8:04 am
Wednesday, September 19, 2007
Beau's Doing Great & Having TestsHello everyone! Sorry, I didn't get an update posted
last night but Grammy was tired and went to bed early. Beau had another good day yesterday. All his counts were
back to normal except his red blood cells. They were a little low so he got another blood transfusion yesterday afternoon.
He continued to receive his meds yesterday that he's been receiving. Grandad brought him a cheeseburger and fries
for a late lunch and he was munching away on those when Kayla and I arrived yesterday afternoon. His spirits have been
good - except when he decides to have a terrible 2 tantrum. Grammy got to the hospital at 7 am this morning so mommy
could get her shower and be ready for the day of tests today. They came and got him at 8:30 and he went down for his
MIGB Scan. This is a nuclear scan particularly for neuroblastoma. Beau received a special IV yesterday in preparation
for the scan. He was scanned this morning and will be scanned again tomorrow morning at 8 am. Today around noon he will
have a CT scan and a bone marrow biopsy. They may have the results of the CT scan later today. I think the bone
marrow biopsy takes a couple of days and I'm not sure about the MIGB. I talked to Jen about 10:30 and they had just gotten
back to the room. Beau had to drink contrast before they come get him for the CT scan. He's been asking for
his milk since the middle of last night but of course he couldn't have anything because of the tests. Hopefully,
once they are finished he will drink his milk and eat a late lunch and then nap for awhile. I'm sure he'll be
tired by then. After Beau finished his blood transfusion yesterday, we loaded him up in the wagon and went out walking.
Kayla insisted on pulling the wagon so she and Jen took turns. We walked to Auntie Julie's office which is beside
the hospital and made a short stop so she could see him then we went to Cold Stone for ice cream. Beau ate a little
and wanted more (because it was melting). Finally, we had to go back in and buy another one. He ate a little of
it and when it started melting he didn't want it anymore. Jen said she would buy as many as he wanted as long as
he kept eating. Once everyone finished, we headed back to the hospital (kids were waving at everyone going home from
work) making another stop at Auntie Julie's office so the girls there could see Beau then we headed on back to his
room. He didn't complain about going back to his room this time. I think he was tired and ready to rest.
Ma & Hodgie came to see him so Beau settled into bed and visited with them. He's been able to go out riding
everyday since Saturday and I think he has really enjoyed it and it has done him good to be out in the fresh air.
If we live, we live to the Lord; and if we die, we die to the Lord. So, whether we
live or die, we belong to the Lord.” Romans 14:8 (NIV) We are always in God's hands - in the good times and in the bad times. We belong to God. We are his
children and no matter what is going on He is there with us - watching over us and carrying us when we can't go another
step. We may not understand all that is going on with our little warrior but God does. He loves him more than
we do. Please pray that the tests go well today and the results are good. Pray for Beau to continue to eat well.
Pray for Jennifer as she cares for Beau. She probably won't be able to work any more with all that is going on so
pray for God's grace and mercy in their lives as they head down a different road in life. So many people continue
to pray for Beau and leave messages for him on this website. All these messages mean so much to Beau's family.
We check the site constantly to see who has left a message. They are encouraging and uplifting and help get us thru
each day. God Bless you all for your love, support and prayers. Love, Grammy
12:09 pm
Monday, September 17, 2007
Beau's Doing GreatGood evening all!! Beau is doing great today.
His counts did a huge jump yesterday and everything is pretty much back to normal except his white count and it's almost
there. He will continue on the meds he's been receiving as well as the TPN. All his tests have now been scheduled
for Wednesday. He will have the MIBG scan, the CT scan and the bone marrow biopsy. Once the results are in Dr.
Grossi will talk with Dr. Gilman in Chapel Hill to determine the next step. Beau may have one more mega round of chemo
here before going to UNC or if the last chemo did it's job well he could head on the UNC. We won't really know
what is going on until the test results are in and the two doctors have talked. However, Beau may get to go home Wednesday
afternoon or Thursday morning for a few days. That would be wonderful since he's been at the hospital for 3
weeks - well he did have 1 1/2 days at home within that time frame. He will continue to have his TPN and antibiotics
at home. He went out riding in the wagon yesterday and ate some more cheeseburger. Mommy went to "Malart"
(Walmart) and got Beau a cool hat and some "Lightening McQueen" bedroom shoes. He had to sleep in the shoes
last night. I took Kayla to see him for the first time in over three weeks. We signed him out to go riding in
the wagon; however, the nurse forgot to sign him out in the computer so once we open the door to leave the hall the alarm
went off. We went back and she did what she needed to do to get him properly signed out but the policeman still met us
outside. Word hadn't gotten to him yet that everything was ok. He was very nice and after a few questions
we were on our way. We know they are doing their job to be sure no child is taken from the Peds floor and that is great.
We walked all the way over to the duck pond behind Brody. Pa met us out there and pulled and then ran Beau and Kayla
around the duck pond. (He had to come home and rest - he was tired). He got us into Brody and the kids got to ride on
the freight elevator back to the 1st floor so we could head back to Beau's room. Beau had to wear his mask and hat
but he was good and didn't fuss. Kayla wore one most of the time so she would be like Beau and he wouldn't want
to take his off. Mommy stopped and bought them blow pops and Beau held his the whole time. He did take a lick
or two off of it. He didn't want to go back to his room so he and mommy were riding around and around the nurses
station when Kayla and I left. He had a great time and it was good for him to be outside. He looks great - back
to our handsome little warrior. The TPN and food he's been eating is putting the meat back on his bones. He's
been much more active the last couple of days. You can tell he feels better. Hopefully, we can go riding again
tomorrow.
1 Chronicles 16:11 Look
to the LORD and his strength; seek his face always.
Our strength comes
from the Lord. Despite all Beau has been thru the last few weeks he's continued to be our little warrior. He's
done well and as I said before it's because of all the prayers going up for him each day. Please pray he continues to
eat and gain weight. Pray that all the tests bring back good results. Pray the chemo is continuing to kill
off the tumors and the antibiotics kill the infection. Please continue to pray for Jennifer and Parham and that God
continues to give the grace and strength to meet each day. God Bless and thanks so much for all your prayers.
Love, Grammy
--
7:18 pm
Saturday, September 15, 2007
Beau Goes RidingHello!!! Beau went riding in his wagon today.
His counts are still low only going up a "hair" each day but the doctor told them it was ok to take him outside
riding in his wagon. He can't go in the playroom or playground at the hospital but it's ok to be out in the
open riding. Parham brought his wagon from home (don't have to worry about hospital germs) and late this morning they
went riding. They walked along the side walk from the hospital to McDonalds pulling the wagon and pushing his IV pole.
Beau waved at all the cars going by and had a great time. A couple from Hamilton saw them and pulled into the parking
lot ahead of them. The gentleman got out and walked to meet them and told them who he was. He has a ministry in
Hamilton and when he saw Beau he said he felt lead to stop and pray for him so right there on the sidewalk on Stantonsburg
Road they stopped and he prayed for Beau. Praise God for such wonderful people. Beau ate french fries all the
way back and decided he wanted part of daddy's cheeseburger and of course daddy shared with him. He ate half of
a cheeseburger. Praise the Lord. He walked around in his room today as well. He had a bit of fever Thursday
night and it went down quickly but they cultured his blood anyway. He has another infection and it's different from
the first one so now he's on a different antibiotic. He will be on it 10 days so it doesn't look like they will
go home anytime soon. Jen told the nurse they would just reserve the room indefinitely. The results came back
from the 2 tests they did earlier this week that tells how well the chemo is working on the tumors. When he left
UNC the numbers was 280. They did it right after he finished this round of chemo and it was around 80 and now it's
down to 40 - 20 is normal so this tells us the chemo is working on the tumors. Thank you Lord!! Gpaw told someone
today that despite the infections and low counts Beau has been doing well. He's acted better than you would think
he should and we KNOW it's because of all the prayers going up for him daily. Beau continues to win the hearts
of everyone that meets him at the hospital. His nurses come into see him even when they don't have him as a patient
that day. One of the assistants, Marcia, has adopted Jen and Bean and is so good to them. Beau even let her play with
him this morning while mommy took a shower. Daddy and Beau rested this afternoon
and mommy went home for awhile to do laundry and take a break. 1 Chronicles 16:34 Now,
our God, we give you thanks, and praise your glorious name. Thank
you Lord that Beau is doing so welld despite the problems this week - we know it's because you are taking care of him.
Please continue to pray that Beau's counts will go on up and that the chemo continues to kill off the tumors. We pray
his appetite continues to grow so that along with the TPN he will get the nourishment he needs to gain weight and get strong.
Thank you good for all the wonderful people on 2West that are taking care of our precious little warrior as well as mommy.
We pray the current antibiotics knock out this new infection quickly. And, thank you God for all the wonderful people
who continue to pray for Beau daily. A group of ladies with an organization called "Angel Wings" have been
emailing him daily. Thanks so much to all of you. It would take pages and pages to thank everyone that prays for
Beau. There aren't enough words to express how much all these prayers means to all of Beau's family. God
Bless and have a wonderful evening.
Love, Grammy
Thursday, September 13, 2007
Beau Diddley Has Another Quiet DayHappy Thursday!! Beau had another quiet day today.
His white count went up another "hair" today. Looks like it will be a slow process this time - got
to remember he got a "MEGA dose of chemo". He still has that bacteria or infection in his stools. When
I talked to Jen to night he was running a slight fever so they took blood to do some cultures. He had a little runny
nose today so it could be he's go a little cold. He continues to receive his antibiotics, TPN and other meds. Today
he had cereal and banana again for breakfast. He's eating a little more and he's asking for certain
foods so that is good. He's drinking his pediasure and some juice. So thank the Lord his appetite
seems to be coming back. The doctor told Jennifer that Beau would probably stay at the hospital until the middle
of next week. They won't let him go anywhere until his counts are back up anyway and he has those tests Tuesday and
Wednesday. Jen and Parham would just as soon stay there since he has those tests. They are settled in their
room and their nurses and other staff are wonderful. They are so good to them and treat them like they are family. They
let Beau help them when they are working on him. In fact, he knows the drill now and they don't have to tell him
or show him what they want him to do he just does it. He's "in-training" to be a doctor. All
of Beau's nurses and other staff have been so good to all of Beau's family. They always speak and
take time to talk to us. Beau is 2 and while he may be in the hospital it doesn't stop him from having a terrible
2 moment. He got mad when mommy got in the shower this morning and when he gets mad he throws things so Grammy was chasing
pappies (pacifier) around the room. I finally put them where he couldn't get them. Well, he didn't like
that either. I kissed him on the head when I was getting ready to leave and he didn't like it (guess he was still mad
at me) so he wiped the kiss off. I blew him a kiss and that made him mad too. He was just having a "terrible
2" moment. He spent another day in the chair watching for airplanes, buses and motorcycles. I'm glad
he has a window that he can look out and see so much activity going on. He's very observant and doesn't
miss much. Nehemiah 9:5 "Stand up and praise the LORD your God, who
is from everlasting to everlasting. Blessed be your glorious name, and may it be exalted above all blessing and praise."
Thank you Lord for the progress Beau is making each day. We praise you and thank you for all
you continue to do in Beau's life and in his family's life. Thank you for giving Jennifer and Parham the grace, mercy
and strength they need to face each day. Jennifer and Beau have spent countless hours in the hospital over the last
10 months. It's hard to keep a smile on your face and be happy when you are living in a hospital room. But thru
it all Jennifer has maintained her sweet smile and is kind not only to Beau but to everyone that comes into the room.
When mommy is around, Beau doesn't want the nurses to take his vitals and give him his meds by mouth so mommy does it.
She is always patient and loving and sweet with Beau. Patience and love that comes from you Lord. Patience she
learned during the years she worked with jr. high kids at church (you have to have patience if you're going on bus trips
with 30 jr high kids) Little did she know at that time that God was teaching her patience, faith and trust - the things
that she has needed and will need to get her thru the the road that lies ahead - God knew what was coming and what she
would need and He prepared her and she didn't even know it. God is good all the time - all the time God is good.
Take a moment to praise him and thank him for your family and all that you have in your life. God Bless!!
Love, Grammy
10:09 pm
Wednesday, September 12, 2007
Beay;s White Count Starts to ClimbGood evening dear friends!! Beau's white count
was 100 today - Praise God!! He did receive more platelets today but other than that he just continued to receive
the meds he's been receiving. He ate a little more today some banana, pizza, Gotarts and crackers. He spent
a lot of time in the chair looking out the window today. Mommy ordered him some new golf clubs a while ago and
they came today. They are real clubs just kid size. She tried to get him to get up and hit some balls in his room
but he didn't want to - maybe tomorrow. He continues to look better each day and he really looks like he is starting
to get some meat back on his bones. All in all it was a quiet uneventful day - Thank you Lord!! 1
Chronicles 29:13 Now, our God, we give you thanks, and praise your glorious name. Each
day we continue to thank God for all he is doing for our little warrior and we praise God for the mighty way in which he is
using this little 2 yr old. He may only be 2 but he is a mighty warrior for God and he doesn't even know it.
Everyday we continue to hear of more and more people praying for him. You only have to look at our little "Beau
Diddley" to know the prayers are working. September is childhood cancer awareness month. There are so many
kids out there fighting this rare childhood cancer neuroblastoma. If you haven't done so, please look at the videos
Jen has posted on Beau's home page and go to the "Loneliest Road Campaign" website and see what these 5 dads
are doing to bring awareness to this disease. Please take a minute to go to the website below and see the kids and their dads.
At the bottom of the page, you will find websites of other kids fighting neuroblastoma. Beau's web-page is there
as well. You will never be the same after you look at these websites and see what these kids have endured.
http://graceoughtoncancerfoundation.org/loneliestroad/ABOUT_US.html
Then please go to the website below and send an email to our Senators and President Bush urging them to back and
pass upcoming legislation for funding for childhood cancer. It is desperately needed and you can make a difference.
Your child, grandchild, niece, nephew, brother or sister could be the next child to be diagnosed with some form of childhood
cancer.
http://capwiz.com/curesearch/home/
God Bless!!!
Love, Grammy
8:21 pm
Tuesday, September 11, 2007
Our Little WarriorGood evening!! Beau is doing well.
His white count bottomed out at zero and stayed there the last two days. The doctor told Jen today it went up a "hair"
so I guess it was just a slight increase. Dr. D told Jen yesterday Beau had a "mega dose" of chemo this time which
caused his
white count to drop faster than it normally does and it is taking longer to go back up than it has in the past. This
has allowed the germs that normally live in our bodies to become his worst enemy. Two bacteria (don’t know
which two) that live in your belly caused an infection in his blood. He also has had infection in his stools, and urine. He
has been receiving the medicine he normally gets to help bring his white count up. He’s also received another
drug twice by IV to help his immune system. He’s been receiving antibiotics as well as a drug for the infection
in his stools, and several other drugs to fight the stuff going on in his little body. He’s continued to receive
his TPN everyday. He’s received 2 blood transfusions so far and got another one today. He’s received
platelets as well. He’s not been eating much but he has been drinking his Pediasure. If he does ask
for something to eat, they give him whatever he wants. He had candy corn and GOTarts this week. There are 2 specific
tests they run on his urine to determine how the chemo is working on the tumors. They did it before he left UNC and
the count was 280. They did it when he finished chemo and again last week and it was down to 80 or 70 so it shows the
chemo is working on the tumors. They got urine again yesterday to run the tests again but it will be about 5 days before
they know the results. The doctor told Jen this afternoon that Beau will probably be able to go home on Sunday.
He will have been on antibiotics for 10 days and his counts should be on the up-swing by then. Beau will return
to the hospital on Tuesday to have a MIBG test (test specifically for neuroblastoma). He'll go back Wednesday for a
CT scan and another bone marrow test. Next Thursday, Sept. 20 is when Beau would normally start his next round of chemo
but Jennifer isn't sure if the time frame for this protocol is the same as in the past. They can't do chemo
again until his counts are at a certain level anyway. Beau has been so thin for the last few weeks but he finally looks
like he’s starting to get a little meat on his bones so hopefully the TPN is starting to work. His color has been
good the last few days. Well actually, he looks good. If you saw him you wouldn’t realize all the things
going on in his little body. He's played some each day with his remote controlled helicopter and Jen puts him in the chair
at the window and he watches all the vehicles going by. He can also see the airplanes taking off from the airport.
I took Kayla and Gabby (his dog) over there today and we stood outside his window and waved to him. I called his room
and Kayla and Gabby (yes gabby) talked to him. He was smiling and waving. Romans 8:25
But if we hope for what we do not yet have, we wait for it patiently. Beau has spent the better
part of the past month in the hospital. We want him to hurry up and get better and get back to playing and being our
little Beau. But, that is not the reality of the world we are living in right now. We know Beau has a tough
road ahead but he has shown us how strong he is. He continues to be our little warrior and God continues to use
Beau to touch so many lives. We know God is still in control and we must wait patiently for God to work his miracles
in Beau. Everything is in God's time. Please pray that Beau's white count starts to climb back up and that
all the infection in his body is soon gone. Pray the TPN nourishes his body to the max and he starts gaining weight.
Pray the chemo continues to kill the tumors and when he has his CT scan they will see they have shrunk and died. Please
continue to pray God's grace and mercy on Jennifer and Parham. As always, thanks so much for your continued prayers
and love. God Bless!
Love, Grammy
Sunday, September 9, 2007
Beau's Weekend UpdateGood morning all! Beau's had several quiet days
in the hospital. He does have an infection in his blood as they had suspected and today it shows a little infection
in his urine and stools. The tests never showed exactly what it was. His white count has basically bottomed
out to nothing but as the doctor reminded them his chemo dosage was much higher this time so it's not unexpected. Right
now he doesn't have the capability of fighting off his own germs in his body. He's continued on antibiotics,
fluids and TPN. He also received something for his immune system the other day and will receive it again today as well.
Beau received a blood transfusion the other day because his red count was low as well. He received platlets
this morning, will receive another blood transfusion today and I believe more platlets again later today. Jennifer
said he actually looked and acted the best he has in a couple of days. He's not eating much but has been
drinking his pediasure. He sat in the chair for awhile on Friday morning and watched the cars go by and all the folks
coming and going from the hospital. He even got to see an airplane, helicopter and motorcycle go by. He was excited.
He also played with his remote controlled helicopter. He's continued to be our little warrior thru it all showing
us how strong he is. Hebrews 11:6 Without faith it is impossible to please
God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. I had someone ask me yesterday how did we handle this how can Jennifer deal with this day in and day out.
I told her faith and trust in God and most importantly all the prayers being sent up in Jennifer and Parham's behalf.
We have requested prayers to help keep them strong and for God's grace and mercy. We believe God will heal Beau
so that is how we live each day. Not that we don't have our down moments we are only human but you can't
live in gloom doom and despair each day - what good would that do. Please pray that Beau's white count/immune
system will start going back up/build back up. Pray that the TPN will start nourishing his little body and plumping
him back up. Pray that Beau's family continues to stay strong and can meet each day head on with God's grace
and mercy. Thank you so much for all your continued prayers, love and support. Gob Bless!!
Love, Grammy
12:43 pm
Thursday, September 6, 2007
Beau Goes Back to the HospitalGood evening all!! Beau had a quiet day Tuesday and
Wednesday. He played some on Wednesday and walked around a little more. He even ate about 10 bites of pizza. Pizza
seems to be the thing right now. He started his TPN on Tuesday night. He stayed with Ma yesterday and Jen said
all he wanted her to do was hold him. He didn't eat much. Jen knew he didn't feel good when she got home from
work last night. He had a little fever but not enough to call the doctor. He woke her up about 11:30 and
his fever was a little over 102. They called the doctor and then took Beau back to the hospital. As you know,
the chemo this time was stronger than before. His white count was 12,000 on Monday and 300 last night so it had dropped
quickly this time. The doctor reminded them that the chemo was strong this time so his counts would drop more quickly.
Beau had not had good bowel movements the last couple of days so they had given him something for it yesterday. He acted
like his tummy was hurting so they did an xray of his tummy and bowels but everything was fine. He finally had 2 really big
poops and his tummy seemed better today. They cultured his blood but it will take several days to see if anything is
growing there to cause infection. They went ahead and started him on antibiotics to be on the safe side. He is
getting fluids and one other thing but I don't remember what Jen said it was but it's for his immune system.
He's just laid around today and rested and slept. He did play with his little remote helicopter for awhile this
afternoon. Everyone in the room had to duck and get out of the way because he's a wild flyer. We don't
know how long he will be there but hope its only a few days. Psalm 25:4-5 Show
me your ways, O LORD, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is
in
you all day long. While we might not understand everything that is going on right now
with Beau, we continue to pray that God's will be done in Beau's life and that he continues to guide Beau's family
each day. We also pray that God continues to lead and guide everyone that is taking care of Beau. We must continue
to ask for God's grace and mercy and continue to put our hope, faith and trust in Him. While Beau is not as physically
strong right now he continues to be our little warrior. He held up his little arm today to have his temperature taken.
He still has that pitcher's arm when he gets mad - better watch out because whatever is in his hand will go flying across
the room. He may look weak but he is still strong. He still knows what he does and doesn't want and will let
you know in a heart beat. Yes, he continues to be our little warrior. We have been so blessed by this precious
little boy. Please pray the chemo is killing the tumor as I write this. Pray for the blood of Jesus to flow thru his
body and kill all the cancer cells. Please pray the TPN will start to nourish his body so he can gain weight.
And, pray that Jennifer and Parham stay strong and don't get too run down. And, we - Beau's family thank God
each day for all of you. So many people continue to pray for Beau and ask about him each day. We are so blessed
in so many ways. Will keep you updated. God Bless!!
Love Grammy
7:22 pm
Tuesday, September 4, 2007
Beau Goes HomeGood morning all!! Beau went home Monday afternoon.
Jennifer said his color looked better after he received the blood transfusion and he was starting to act like he had a tad
more energy. Parham took his wagon back to the hospital Sunday and late in the afternoon they rode and rode and
rode. He loves riding. After they got home yesterday, he wanted to ride so they took him riding and ended
up at Grandad Miller's place at the river. When they got there they road in the golf cart. All he wanted to
do was ride. He drank his pediasure yesterday and had a few fries. Jen said he wanted to get down and walk yesterday
morning. It's the first time in over 2 weeks he's walked so needless to say he was a little wobbly. Our
little warrior is starting to come back and be more like himself. We pray the chemo is knocking down those tumors and
killing them and the TPN is nourishing his little body. He goes back to the clinic on Friday to have his counts checked and
sometime in the next week or so he will have another CT scan to see how the tumors have reacted to this round of chemo. Ephesians 6:13 Therefore put on the full
armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything,to
stand. Beau has a long road ahead of him but once again he has shown us what a warrior he can
be. He may be only 2 yrs. old but his angels have "put the full armor of God on him". We believe God will
heal him so we must stand our ground and stay steadfast in our beliefs. We must continue to pray to God for Beau's
complete healing, pray that God's will be done in Beau's life, pray that God will continue to use Beau to touch the
lives of so many, and continue to pray for God's grace, mercy and love on Jennifer and Parham. Jen plans to work
tomorrow and Thursday so Beau will stay with Ma. Pray they both have good days. While Jennifer will be working,
it will be a break from just sitting in the hospital day in and day out. She will be in the hospital but she
will be working and using her mind, knowledge and hands to help others. That always makes us feel good. And, as
always, thanks so much for all your continued prayers and messages. They uplift the Stanley family (and extended family)
and get us all thru each day. God Bless!!
Love, Grammy
8:27 am
Sunday, September 2, 2007
Beau Continues to be our Little WarriorGood afternoon all! Sorry I haven't updated in
a few days but there hasn't been much going on the last few days. Beau started his chemo on Thursday and finished
up this morning. He received a pint of blood this afternoon as well. He's been receiving TPN each night from
6 pm to 6 am. He's also been receiving fluids each day. He and mommy have just rested in his room this
week. He hasn't felt very well this week but we feel like it's because of the tumors as well as being
malnourished. His color looked better today and should improve more with the blood transfusion. Each day
the TPN is mixed to meet his nutrient needs so that will help his little body start to build back up. He will continue to
receive TPM at home as well. He's been drinking 2-3 cans of pediasure each day as well as eating a few bites of
food here and there. As you may remember Beau had a bone marrow test last Tuesday while in Chapel Hill. The
test results showed that he has neuroblastoma cells in 5% of his marrow. While this isn't what we wanted to hear,
it's only 5%. That means 95% of his marrow doesn't have any neuroblastoma cells in it. This chemo treatment
as well as the upcoming ones should knock it out. And, in the near future he will have 2 different rounds of intense
chemo that will wipe out his bone marrow and then he will have 2 stem cell transplants to rebuild his bone marrow so hopefully
the cancer will be wiped out of his marrow and not return. He did have some excitement on Friday. The new Miss
NC came to the Children's Hospital for a visit and to read to the children and she gave a book to each child that came
to the playroom. So our little warrior has been able to meet the 2006 and 2007 Miss NC. This morning he wanted
to play but the playroom is closed today and tomorrow for Labor Day. Beau's nurse found a kid's wheelchair so
we spent an hour riding around the hospital and on the pediatric playground. Beau watched mommy and grammy shoot basketball.
Daddy went home and got his wagon so they were going riding this afternoon. He really enjoyed being outside. Ma
and Hodgie stayed with him so mommy and daddy .could take a break and go eat lunch. Hopefully, he will be able to go
home tomorrow. Romans 12:12 Be joyful in hope, patient in affliction, faithful in prayer.
It has been 9 months since we started this journey, There have been many bumps in the road
more than we wanted at times. But thru all this God continues to be in control. God continues to love Beau and
his family and will continue to watch over them and take care of them. We must continue to have a joyfull, positive
attitude. If we believe God will heal Beau AND WE DO then we must act like it. We must have an attitude of trust,
faith, hope and joy. We must have patience because God works in his time not ours. All the while God has been
using our little warrior to touch so many lives in so many ways. We continue to see this each day. Beau has touched
more lives than you and I ever will. God loves Beau. Thousands of people are praying for Beau each day. God is
listening. Please continue to pray that the chemo will knock down/kill the tumors in his body and the cancer cells in
his bone marrow. Pray that his little body responds to the TPN and he will gain weight and his little body will get
back in shape. Please continue to pray for Jennifer and Parham and that God's grace. love and mercy are with them
each day. They have been so strong and I pray that God will keep them strong for the long road ahead. Thanks so
much to everyone for your continued love and support and prayers. May God richly bless each and everyone of you.
Happy Labor Day!! Stay Safe!! God Bless!
Love, Grammy
4:49 pm
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