Good morning all!  Beau arrived home yesterday afternoon and checked into the Children's Hospital at PCMH.  He got settled in and took a nap.  He has not rested well in the last few days and they were up yesterday morning at 5 am riding and waiting for their appt. at UNC. They were not able to perform the test they had planned yesterday.  UNC uses oral medication to sedate the kids not an IV like here at PCMH.  It did not put Beau out enough to keep him still so he will have that test done here at some point in the future.  They got checked in yesterday afternoon at PCMH and got his blood work drawn and his TPN (nourishment supplement by IV) ordered.  He started the TPN last night.  He is still drinking Pediasure as well.  He starts his chemo this morning.  He will receive 3 drugs over the next four days. He will receive the TPN at night.  As I mentioned before, he will have a CT scan a certain no. of days after this round of chemo finishes up.  Then most likely will have one more round of chemo here before returning to Chapel Hill.  He's back on the Peds floor in room 240 which he's been in many times before so he has to feel more comfortable being in a familiar place.  He's got "his" nurses and other caregivers back so hopefully he will be happier and will be able to rest better.  Beau, mommy and daddy all need some rest. Mathew 6:25 Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes?  Times like this can be exhausting not only physically but mentally. It's hard not to worry and wonder what is ahead and what will happen but as God tells us in the Bible verse above "DO NOT WORRY ABOUT YOUR LIFE".  We can sit here day in and day out worrying about Beau and what is ahead but what good will it do?  God is and has always been in control.  He is taking care of Beau as well as Jen and Parham and all the rest of Beau's family.  God is taking care of you!!  We must continue each day to put our trust and faith in God knowing we are his children and he will take care of us.  Please continue to pray for Beau and that the chemo will really attack those tumors/cancer cells and kill them so when it's time to have the intense chemo/stem cell transplant there won't be much tumor/cancer cells left.  Pray Beau can rest and that the TPN will do it's job to "beef" Beau's body back up and get him ready for what lies ahead.  Pray that Beau will have an appetite so he can eat and drink as well during this time. And, as always, please continue to pray that God's grace and mercy will be with Jennifer and Parham each day giving them the strength they need to meet what each day brings.  I've said this before but words cannot express how much we appreciate all your prayers, messages and love. It's made this whole process easier to bear.  God Bless!!
Love, Grammy

Beau is coming home tomorrow!  After consultation with the other oncologists, Dr. Gilman has decided that Beau needs probably two more rounds of chemo via IV and this can be done at the hospital here in Greenville.  He decided against the oral chemo treatments.  There is more tumor left than they had hoped there would be after surgery and Dr. Gilman feels they need to kill as much as possible with the chemo treatments he has decided on before he has the intense chemo/stem cell transplant.  Beau will receive a CT scan after the first round of chemo to see how much the tumors have shrunk.  Dr. Gilman feels like Beau will most likely need one more round of chemo and then will have another CT scan.  If the tumors have shrunk enough then, Beau will return to Chapel Hill for the intense round of chemo then stem cell transplant.  Beau had a bone marrow test today (will find out the resutls in a couple of days) and received a dental check up (teeth are great) and one other test.  He has one test left to take tomorrow morning then they will head home to Greenville. He will report to PCMH either Thursday or Friday to start his chemo treatments.  He will receive TPN nourishment while in the hospital and probably at home to build his body back up so he will be ready for the intense chemo.  James 1:6 But when he asks, he must believe and not doubt  We thank God that Beau has made it thru his tests and Dr. Gilman now knows the course of treatment he will proceed with - at least for now.  While we wish they had been able to take out more of the tumor, we are thankful for the amount they did get out.  We still believe and have faith that God will heal Beau.  So many people have prayed this in Jesus' name.  We must believe and not doubt that God has heard and will heal our little warrior.  Even though he hasn't felt good in the last few days and has been thru a lot of tests, he continues to be our brave little warrior.  He has received so many thoughtful, loving emails and we know thousands continue to pray for him.  Everyday I hear of more and more churches all over the United States that are praying for him.  Please continue to pray for Beau and that the upcoming chemo treatments will kill off the tumors.  Your prayers for Jennifer and Parham are working but please continue to pray for them as well.  This is a very stressful time and I continue to be amazed (shouldn't be really) by their strength.  God is working in their lives each day.  Parham drove home early this morning to work and was back in Chapel Hill a little after 8 pm tonight to be with Jen and Beau.  The out pouring of love for this family has been awesome.  Thanks, thanks, thanks!!!! GOD BLESS!
Love, Grammy

Good evening everyone!  Beau returned to Chapel Hill this morning for a 10 am meeting with Dr. Gilman.  They spent a couple of hours talking about Beau and the upcoming tests this week as well as treatment options.  They did a CT scan this afternoon and gave him fluids.  He hasn't been eating much in the last few weeks and his weight was down.  He does have a little thrush in his mouth from the antibiotics he was on last week so they gave him a prescription for some medicine to help clear it up.  I'm sure he hasn't felt like eating because of that.  Jennifer said he did eat a few fries at lunch today. He is scheduled for a bone marrow test tomorrow and a couple of other tests so they will be at the hospital most of the day.  As it stands now, I believe he has one test scheduled for Wednesday.  Dr. Gilman has not made his final decision on what course of treatment they will be following.  He is going to wait until he has all the tests results in this week before he makes his final decision.  It sounds like the treatment will be tailored to fit Beau and his tumors and what will work best for him.  If he feels like they need to shrink/kill off more of the tumor before they do the intense round of chemo/stem cell transplant then they may do an oral chemo treatment for about a month.  He would be able to do that here in Greenville and have his counts checked each week at the clinic here.  Dr. Gilman wants as much of it shrunk/killed before they start the intense chemo/stem cell.  The reason behind this is the chemo and stem cell transplant can work more efficiently and be more effective.  He laid out all the possible options and they discussed them.  Dr. Gilman is very quiet and soft spoken but very knowledgeable and they feel very at ease talking with him.  We are very fortunate to have him taking care of our little warrior.  Proverbs 14:30  A heart at peace gives life to the body...  After hearing what all Dr. Gilman had to say last week and today, we know Beau has a long road ahead of him. Some days/weeks may be harder than others but he will get thru it.  Beau's family must be a peace with all that is going on so Beau can be a peace as well.  Kids may not know what is going on but they can tell if those around them are stressed out and upset.  Again and again Beau has shown us how strong he is.  Even though he hasn't felt good in several days, he still continues to be our little warrior.  It is evident all the prayers going up for Beau, Jennifer and Parham are working.  Even in times of stress, you can see how God's grace and love is working on them/thru them. Please pray for them this week as Beau goes thru all the tests that are scheduled for him.  Pray for the hospital staff that will be working with Beau and that God will continue to guide them.  Pray for Dr. Gilman as he makes decisions on Beau's course of treatment.  Pray God continues to guide him in all he does with our little warrior.  Please continue to pray for God's grace, mercy and love to be with Jennifer and Parham.  And, once again, thanks to all for your love, prayers and support.  May God richly bless each and every one of you. 
Love, Grammy

Happy Saturday!!  Beau got to come home late yesterday afternoon for the weekend.  Dr. von Allmen felt he was well enough from the surgery to come home for the weekend.  They got home about 8:30 last night.  He was a little restless last night.  His tummy seemed to be bothering him a little.  They aren't sure if it's a little constipation or from the surgery.  He's not eating much but has been drinking his pediasure. They are just resting today glad to be home even if it is just for a few days.  They have to be back at UNC on Monday at 10:30 for a consultation with Dr. Gilman.  At this time, he will lay out his plans for Beau's upcoming treatments and his stem cell transplants.  As of yesterday, Dr. Gilman told Jennifer he had heard back from the Children's Hospital in Philadelphia and the hospital in California (I think).  They agreed with Dr. Gilman's plans for Beau's treatment. We do know this much.  Beau will stay in Chapel Hill next week to have a batter of tests done.  They will stay either in the Ronald McDonald House or a hotel.  Beau will report to the hospital each day Tues.-Thurs. for tests. He will check back into the hospital on Friday and will start chemo on Saturday.  I believe Jennifer said he will have 3 days of intense Chemo.  This will wipe out his bone marrow and his immune system. Two-three days later they will transplant his stem cells back into his body via a transfusion.  He will have to stay in the hospital until his bone marrow and immune system build themselves backup.  I don't know how long this will take.  He may be able to come home for a little while once his bone marrow and immune system are back up to speed.  Then, at the appropriate time he will go back to the hospital for another round of intense chemo and another stem cell transplant.  I believe Jen said there may also be radiation after all this.  We know there is a good chance Beau will then go to another hospital for additional treatment.  The Children's Hospital in Philadelphia and Sloan Kettering are two places that have been mentioned.  That is a ways down the road - a long road that Beau and his family will have to travel.  But, all Beau's family agrees that whatever needs to be done should be done.  Our precious little warrior hasn't given up.  He continues to be a real warrior.  Jeremiah 33:6 'Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security.   I know all this sounds overwhelming and it is if you think about it in the natural realm of things.  However, God is still in control.  All things are possible with God and we can do anything thru Christ who strengthens us.  God can do above and beyond what any of us can imagine.  We believe God will heal Beau in his time.  In the meantime, God is using Beau to touch so many lives - peoples' lives that we don't even know.  Please pray for our little warrior to have a restful weekend at home.  Please pray that his appetite picks up and he can eat a little and get some meat back on his little bones. Pray that the tests will go well this week and that God will continue to be with Dr. Gilman and his staff as they work tirelessly for our precious little boy.  Your prayers are working and are greatly appreciated.  Words could never express how much they mean to all of Beau's family.  God Bless!!
Love, Grammy

Good afternoon all!!  Beau got his chest tube out this morning so now he is free from all the tubes.  Jen said he was a little grumpy but they gave him something before they took it out to help him relax.  I told her he has a right to be grumpy.  He ate some solid foods yesterday afternoon and they think it gave him gas.  He didn't rest well last night because he acted like his tummy hurt.  They told them kids often get gas when they first start eating solid foods.  After all it had been almost a week since he had eaten anything.  They got several tests out of the way yesterday that Dr. Gilman wanted to do. I think Jen said he would be back in to talk to them today so maybe they will find out more about the plans for his upcoming treatment. They hope to start his chemo sometime next week.  Great Auntie Rene and Grandma Collins went to see him yesterday.  Rene said he was talking a lot and asking "what is that" when they were looking at a book.  I could hear him talking with I talked to Jennifer late yesterday so he's starting to be more active.  They are currently on the surgical floor but may be moving to the oncology floor in the next day or two.  Rene told me she was so amazed by Jennifer's good spirit and strength.  We know it's because so many people have been praying for not only Beau but Jennifer and Parham to have grace and strength.  It's very obvious that God has heard and is taking care of them as well.  Jeremiah 31:25  I will refresh the weary and satisfy the faint.  Situations like this can cause us to become exhausted and weary.  But as this verse says God will refresh us and give us the strength we need to go one.  We have to remember that even in times like this we must continue to praise and give thanks to God.  I did just that on the way home from UNC the other day and by the time I got to Greenville I was feeling 10 times better than when I left Chapel Hill.  We have received so many wonderful messages and many of them have reminded us God is in control and he can do all things above and beyond the human understanding.  He is using our little warrior to touch so many lives and that in itself is a blessing.  Please continue to pray for Beau, Jennifer and Parham.  Pray the gas pains go away so he can rest tonight.  Pray that the up coming tests will go smoothly.  Pray that God continues to guide Drs. Gilman, von Allmen and others as they make plans for Beau's upcoming treatments.  And, as always, thanks so very much for all your sweet notes, prayers and love.  God Bless!!
Love, Grammy 
    -

Good evening all!  Sorry I didn't get an update posted last night.  I started and the storm struck and the power went out. Beau is continuing to recuperate from his surgery.  They took the Foley catheter out today.  He still has the chest tube in but they clamped it off today for a period of time to see how he would do.  We hope that will come out in the next day or two.  He did have 2 bowel movements today with was great.  We know all that is working now.  He asked for cookies yesterday and nuggets tonight so we know his appetite is coming back. They got him up and he rode around the floor in the wagon last night. Kayla and I went for a visit this afternoon and his color looked good.  Kayla got to give him a kiss on the head and sang a silly song for him.  Dr. Gilman came in this afternoon and talked with Jennifer and Parham about Beau's prognosis and what the plan of action is going to be.  The prognosis was not what we expected or wanted to hear.  We've known since Beau's first surgery that his neuroblastoma was the aggressive kind and the results from this surgery showed that it is very aggressive.  Dr. Gilman has emailed his contacts at several other institutions to confer with them on what the course of treatment will be from here on out.  As soon as he hears from them, he will move forward.  He knows they will have to be aggressive in their treatment and Beau's family has agreed that whatever they need to do - just do it.  Jeremiah 29:11-12  For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 

Then you will call upon me and come and pray to me, and I will listen to you.  While the news today wasn't what we wanted to hear, we must remember that God is still in control.  God has a plan for Beau's life.  Beau is God's child.  He loves him more than we ever could.  We must continue to trust in God and have faith in Him.  The doctors are going to do their best to care for our little warrior and we are all going to pray for Beau, Jennifer and Parham.  A lot of folks are praying tonight for Beau and his family and God hears those prayers. We have a long road ahead of us but we will make it down that road because God will be walking with us.  Thanks so much for all your prayers and love.  Please keep the prayers going up over the next few days as the doctors decide what course of treatment will be best for our precious little warrior.  Please pray that God will guide them in their decisions.  Please pray that God will give Jennifer and Parham the grace and strength to meet each day and what it brings.  I am so proud of them and words can't express how much I love and admire both Jennifer and Parham.  God Bless!!!
Love, Grammy

Good evening all!  Beau continues to be our awesome little warrior.  He is doing so well.  Yesterday, they monitored his urine output as well as the drainage from his NG tube and chest tube.  He still had the epidural in so he slept off and on during the day.  He had lots of company in and out but I don't know how much he really understood.  I took Kayla back to see him and when things calmed down later in the afternoon I asked him if he wanted to see her and he shook his little head yes.  We held her up to the crib so she could talk to him,  As usual, Kayla started being silly and we got a slight smile out of him.  They propped him more on his side and were going to move him every 2 hrs.  Today, they took the epidural out and moved a regular hospital bed into the room.  Jen said he seemed more comfortable in that bed.  He could put his little hands behind his head and he could rest better. He loves his hands behind his head when he's resting.  Jen can sit in the chair beside the bed now and see him and hold his hand when he decides he wants mommy to hand his hand.  His white count was slightly elevated so they were going to make sure there was no infection anywhere.  He was retaining a little fluid but the dr. said that was normal and they put him on lasiks today to help flush the fluids out of his system.  Jen said he output a lot of urine so he wasn't as puffy tonight.  If he is urinating like they want him to by tomorrow, they may take the foley catheter out.  There is a possibility they might take the chest tube out as well since there hasn't been any drainage in 24 hrs.  He can have pain meds if needed now that the epidural is out.  They took the epidural out at 11 this morning and he didn't have to have any pain meds until 7 tonight.  He's rested today and when I talked to Jen a few minutes ago she said he was doing well.  He continues to show us how strong he is.  He looked good yesterday and his coloring was good.  He never ceases to amaze me.  It is obvious God's grace and love is with him.  Romans 15:13  May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.  While the news wasn't what we wanted to hear on Friday, we must continue to be filled with joy, peace, hope and trust.  Beau is still God's child and God is in control.  It is so evident God is with Beau.  You only have to look at his peaceful little face to see God's light shining there.  They got out a significant amount of tumor.  That means there is less there now so the chemo can really work hard on what is left.  My sister talked to the Dean of the School of Medicine and he assured her that Beau is in the best hands in NC.  Dr. von Allmen and Dr. Gillman are very knowledgeable about neuroblastoma.  This is their speciality.  They will do everything they can to make sure Beau receives the best treatment he can to kill the tumors and put him on the road to complete recovery.  God will be guiding them every step of the way so how can we lose?  So many people continue to pray for Beau and his family.  He is being lifted up daily in prayer and God hears.  Our God is an awesome God. He loves Beau more than anything.  We must continue to place Beau in God's hands and trust Him to take care of him in his time and in his way.  Thanks so much to everyone for your prayers.  Once again, they got us thru a long day on Friday.  They get Jennifer and Parham thru each day as they sit with our little "Beau Diddley" at the hospital.  We love you all!!  GOD BLESS!!
Love, Grammy

Hey Everyone!  I apologize for not updating last night after Beau came out of surgery.  They were actually finished sooner than they anticipated.  Beau did very well, he only required 1 unit of blood, Dr. von Allmen said he gave him that only because it was a long surgery.  They were able to remove the breathing tube in the OR before he went to recovery, and that was great, because last time he hated it.  He has an epidural in that is keeping him numb for pain control.  It has worked out really well, because they do not have to keep him doped up on pain meds.  He was and still is a little groggy, but that is to be expected.  In the recovery room, the RN was letting him dip his pappy in some sugar water and he loved that.  Most of you probably know that he loves his pappys (pacifiers), so of course he had more that one and he would dip one, suck on it and dip the other.  The RN said that he would keep holding up one of the pappy's up saying more.  Last night he started asking for his milk.  He has an NG tube in until his bowels start working again, so hopefully that won't take long, be cause he an ill little thing when he can not have his milk. We were a little disapointed with the amount of tumor that Dr. von Allmen was able to remove, but we are still gonna keeping praying and keep they faith that Beau will be healed completely.  He removed a big portion of it that was in the renal bed/close to the aorta.  It had started to move down towards his left leg, but he was able to get that out.  He did have to leave what was around the aorta, but we were kind of expecting that anyway.  He was able to remove the piece by the pancreas, but had to remove about 12 inches of his colon to do that.  Dr. von Allmen said that not to sound trival, but removing part of his colon was not really a big deal, it was better to get the tumor out.  The tumor had started to invade the diaphragm, and he was not able to remove that, because he would have had to remove sections of the diaphragm.  He did not have to cut into the chest as much as he thought he was going to have to.  He did not feel any tumor by the esophagus, like initially thought, so he felt that it would be best not to cut all the way into the chest and take the risk of damaging some of the important nerves that are in that area.  Beau does have a chest tube in to help with draining the chest.  We asked him if he thought that the tumors had gotten bigger since the last CT scan since Beau had not received chemo in a while and he said that there was really no way of telling, because sometimes CT scans will show things that are not there (i.e the tumor by the esophagus) or vice versa and not show things that are there.  Anyway, I hope that have not blabbed on to much, just wanted to let you know what was going on.  We are just very happy that Beau came through the surgery so well!!  Again, we are just gonna keep praying and trusting in GOD that he will heal Beau.  Hopefully it won't be to long before he can start receiving chemo again, it will just depend on how long it takes his bowels to get straightend out.   The PICU has 4 Family Rooms right outside of the unit, with beds and showers, so Parham and I were able to stay in one of those last night and not be to far, but were able to sleep a little.  His RN from last night said that he slept all night, and she did not see any reason that he could not be moved out of the ICU today.  So hopefully that will be the case.  Thanks so much for all the messages and prayers, they mean the world to us!!  I will update later today after the Drs round and let us know what we are going to do next.  Love to everyone!  Jennifer

Good morning all!  Sorry I didn't get an update done yesterday.  I was tired and went to bed early.  Jennifer, Parham and Beau made the trip to UNC yesterday to meet with Dr. von Allmen and his staff.  They had a good visit and learned what was going to take place during the surgery.  It will be extensive.  Dr. von Allmen told them to expect for Beau to be in surgery 10-12 hrs. tomorrow.  He plans to get everything out that he can.  He will cut down the same incision so that is good.  However,he will have to come off that incision and cut around his side toward his back in order to get the piece at the pancreas.  He told them he would be going very slow and would be very meticulous.  Jennifer and Parham liked Dr. von Allmen and feel Beau will be in very good hands.  They will go back to Chapel Hill this evening to spend the night.  The Ronald McDonald house is full so unless a room becomes available today they will spend the night at a motel and move into the Ronald McDonald house as soon as they can.  They aren't sure but think only one parent can spend the night with him.  They have to be at the hospital at 6:30 am tomorrow morning so we assume surgery will start shortly thereafter.  Beau's great Auntie Nay and cousin David were in Raleigh helping cousin Whitney get moved into her apartment so they met Jennifer, Parham and Beau for a late lunch.  Kayla calls David her BIG cousin.  He's 16 yrs. old about 6 ft.7 in so he is big.  David has a BIG Bronco (I think) and he wanted Beau and Parham to see it.  Jen and Beau will be home today packing and getting ready to go to UNC.  They aren't sure how long they will be there but Jen is planning on 2 weeks.  It's hard to know what you will need and what to take.  Mark 10:14 Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.  Jesus told his disciples the kingdom of God belongs to the little children.  They are his children and he wants to be with them and He will protect them.  God will be with Beau and his family tomorrow.  Beau's angels will be surrounding him and protecting him during surgery tomorrow.  They will be standing guard in the operating room. We pray God will be guiding Dr.von Alllmen and his staff as they operate on our precious little warrior.  It will be a long day but we - Beau's family will be fine - we will make it through another long day because we know our little warrior is strong and this is what it takes for him to be heal.  I can stay strong each day because I have this Bible verse to fall back on Philippians 4:14 I can do all things through Christ which strengthens me.  Even during the most overwhelming times you can go on, you can be strong as long as you allow God to be there for you and to hold you up and carry you when you don't think you can go on.  He never leaves you or forsakes you.  He is always there.  He will be with all of us tomorrow.  Jen will take her laptop so hopefully we will be in an area that we can use it and put out little updates during the day.  Thanks in advance for all your love in prayers that will be going up for Beau tomorrow.  GOD BLESS!!
Love, Grammy

Hey Guys it's me Beau!!  Haven't talked to you in a long time.  My mommy and daddy are tired so their takin a little rest.  I think I wore them out today.  We went to the river to see Grandad and Grandma today.  I gotta play golf with daddy and grandad.  Mommy, Kayla, Grandma, Auntie Kelly and Brie rode in the golf cart.  She made me ride some of the time. We had so much fun. I love playin golf with daddy.  I didn't want to leave the river and when we got home I got mad. I didn't wanna go home.  I cried so much mommy and daddy put me in the car and we went ridin. I watched Barney while we rode around.  I didn't like the way they were goin so I kept tellin momma that way and pointin to the way I wanted to go. Momma called Grammy and told her how I was actin.  She told her I was in one of those moods where I wanted to do just what I wanted.  I just wanted to do what I wanted to do.  We finally hadda go home.  I was so mad. I cried and cried and tried to get out the back door. I;m not tall enough to open the door by myself.  They wouldn't take me back out. I hadda finally stop cryin cause it wasn't doin no good.  I got to go to Grammy's house on Friday afternoon and played with Kayla.  We hadda a good time.  Momma had to go get somethin put on her hair.  Don't know what it was but Counsin Dawn did it for her.  Me and Kayla play with the kitchen and baseball bat and some other toys. I told Grammy I wanted pizza so she fixed me and Kayla some pizza.  Kayla sat in the little chair with a tray on it. I put my plate on the chair and sat on the stool.  Kayla got out of the chair so I sat in it.  Kayla didn't want me to sit in it and it made her so made she started screamin. I didn't know what was wrong with her in the beginnin so I started screamin too. Grandma Meme said "what in the world is wrong in there"?  She thought we got hurt.  Grammy had to hold us on her lap until we stopped screamin.  Kayla made me mad later and I popped her in the face so she started cryin again.  She is bossy sometimes and I didn't like it.  I wanted my way.  Grammy hadda get on both of us. She told us we were both being not nice. She told us to be nice and love each other.  We do love each other just sometimes we gonna fight.  You know how that is with kids.  Anyway, we hadda really good time playin.  Momma's gotta go to work tomorrow so I'm gonna stay with Ma.  I haven't seen her all week. She went to the beach with Auntie Babbe and Haley.  Momma said I gotta go to Chapel Hill on Wednesday to see the Dr.  I gotta go up there and stay for a couple weeks.  I sure will miss my house.  On no I hear momma gettin up better go.  Love you guys.  Thanks for all the prayers.  Later dudes.

As I told you earlier we found out this week that Beau will have his surgery at the Children’s Hospital at UNC not here as originally planned.  Dr. Gilman is Beau’s oncologist at UNC and is calling the shots on how things proceed.   Dr. Grossi sent the results of the test to Dr. Gilman.  Dr. Gilman conferred with Dr. von Allmen, Chief Pediatric Surgeon at UNC then they called and talked with Dr. Pence and Dr. Grossi.  It was agreed upon that Beau would have the surgery at UNC.  Dr. von Allmen has extensive experience with neuroblastoma.   Dr. Gilman called and talked with Jennifer this afternoon.  The tests showed that a “good amount” of the tumors are dead.  From what we understand that means a good portion of each piece of tumor that is remaining is dead tissue.  There is still living tissue there; therefore, they want to get as much of the tumors out as possible before the stem cell transplant.  The plan is to go in and remove the pieces close to the pancreas and the esophagus.  We already knew they can’t remove the piece around the aorta.   The surgery will end up being very extensive.  Beau will once again have to be cut down the front of his body.  Once they get inside, they will have to cut thru the chest cavity to get to the piece at the esophagus.  Dr. Gilman told her it would be an “all day surgery”.  He should recover from the surgery iand be able to have his next round of chemo two weeks after the surgery.  The plan is for him to have that round of chemo back here at PCMH.  Four weeks after that round of chemo, Beau will go back to UNC to have the last and most intense round of chemo.  It will totally wipe out his bone marrow and immune system.   A few days after he finishes this chemo he will start his stem cell transplant.  We understand he could be a very sick little fellow during this time.  Sometime after the stem cell transplant and we don’t know how long, he will have radiation on the piece of tumor at the aorta.   They will go to UNC next Wednesday to meet with Dr. von Allmen to find out all the details and we think to have blood work done.  They will be able to come bcak home and right now it looks like they will report to the hospital early on Friday morning.  Jennifer and Parham plan to go up Thursday evening and spend the night at the Ronald McDonald  house.  Mathew 6:25  Therefore, I tell you, do not worry about your life, what you will eat or drink; or about your body.....   This has all been a little overwhelming especially since we thought he would have surgery here yesterday and have the piece located close to the pancreas out.   Now he’s going to UNC and having extensive surgery.  That is how life goes when you are dealing with something like this.  It's hard not to worry about what is ahead but as God tells us in Mathew 6:25 - don't worry.... God is in control and he will take care of Beau and his family.  It goes on to say in Mathew 6:26 how valuable we are to God.  We are his children and he always has our best interest at heart.  Please continue to pray for our little warrior he has some tough days ahead.  Please continue pray for Jennifer and Parham and all the family that will be making trips to and from UNC over the next few weeks.  And thanks for all the prayers that have continued to go up for him over the last few weeks.  Prayers have kept our precious “Beau Diddley” strong.   They are working.  God Bless!!
Love, Grammy

Good evening.  We still don't know the date for Beau's surgery or many details of what is ahead.  Jennifer talked to the coordinator at UNC and about all she could tell her was they are trying to get the surgery scheduled.  Jennifer talked to Dr. Grossi today as well.  He told her Dr. Gilman wants to get as much of the tumor out as they can before the stem cell transplant and the pediatric surgeon at UNC agreed.  Beau will have to have radiation after the stem cell transplant and they want to do as little radiation as possible. If they can get the other two pieces out then the radiation  will be on the piece on the aorta.  Dr. Grossi told her they will be going in thru the front like they did before.  Once they are in there, they will have to cut into the chest cavity to get to the piece at the esophagus.  It sounds like the surgery will be as intensive as it was before simply because they have to go thru the front then cut into the chest cavity.  It sounds like we will have another long day of surgery.  Hopefully, the coordinator from UNC will call her tomorrow so we will know what day the surgery is and get more details.  Psalm 121:1-2  I lift up my eyes to the hills--where does my help come from? My help comes from the Lord....  Things can change so quickly when you are dealing with an illness such as Beau's.  You day can be turned upside down and before you know it you are heading in a totally different direction.  This has been our way of life for the last 9 months.  But, when we start feeling a little overwhelmed and lost, all we need to to is lift our eyes to "the hills" and pray and God will give us the comfort and strength we need to get thru another day.  He is always there and we can always go to Him no matter what time of day or night.  Please pray for Beau and the upcoming surgery.  He will need all our prayers over the next few weeks.  Please pray for Parham and Jennifer and that God will give them what they need to make it thru these next few weeks.  Pray for safety as family travels to and from UNC.  Prayers have helped and we need for them to continue.  Thanks so much to all for your continued prayers, love and support.  It means more than you will ever know.  We love you and appreciate you.  God Bless!!
Love, Grammy

Good afternoon all.  Sorry, I haven't updated in a few days.  We didn't have any news to share with you about Beau's surgery until now.  We've been waiting to find out which day Beau's surgery would be on.  We had been told it would be Tuesday or Thursday afternoon but had not heard anything until late this afternoon.  Dr. Grossi had sent the CT scan to Dr. Gilman at Chapel Hill.  Since Beau will have his stem cell transplant at Chapel Hill, Dr. Gilman needed to see the CT scan.  Dr. Gilman, Dr. Grossi and Dr. Pence all had to agree on the next step.  Dr. Gilman, Dr. Pence, Dr. Grossi and one of the surgeons at UNC talked today and it was decided that Beau will go to UNC to have the surgery done. Jennifer hasn't actually talked with Dr. Gilman yet so she doesn't have all the details yet.  We do know he will have the surgery on or before next Wednesday.  Jennifer will talk with Dr. Gilman's Office tomorrow so we will know more then.  We wish he could stay here for the surgery but we know they are doing what is best for Beau.  Psalm 121: 5,7 & 8  The Lord watches over you....The Lord will keep you from all harm....the Lord will watch over your coming and going.  Beau will be traveling to UNC soon for his surgery.  He and his parents will be away from their family.  Fortunately, Beau's cousin is in Raleigh so she will be able to run over and be with them some.  Family here will be traveling up there and we have family members in Lexington & Kernersville that will be able to come to Chapel Hill to see him.  We won't be able to be with him as much as if he was here. However, God is always with Beau.  He is with him 24/7 watching over him and keeping him safe.  The doctors and nurses at UNC are wonderful and Beau will be in good hands.  We know he will be well taken care of.  Please pray for Beau's upcoming surgery and his trip to Chapel Hill.  Pray for the surgeon and Dr. Pence as they care for Beau.  Pray for Jennifer and Parham.  We know all the prayers have kept Beau strong and will continue to do so.  Thanks for keeping them going up each day.  Will update tomorrow as soon as we know more details.  God Bless!!
Love, Grammy

Good morning all!  Sorry I didn't get an update posted last night. Beau went into the clinic yesterday morning to get his blood drawn and counts checked.  His hemoglobin was a little low but they decided to wait until he checks into the hospital next week to give him some blood.  His other counts were good.  Dr. Pence contacted Dr. Grossi and told him he decided to remove only the piece of tumor close to the pancreas.  If he removed the piece close to the esophagus as well, then the surgery would be more intense and take Beau longer to recover  That piece of tumor is the smallest piece wo we hope the next two rounds of chemo will kill it off.  The incision for the pancreas piece will heal quickly and Beau will hopefully be able to start chemo 5 days after surgery.  Beau won't have to be in surgery as long and it won't be as invasive so all of that is good.  Beau's surgery will now be either Tuesday or Thursday afternoon.  Dr. Pence is on vacation this week but will look at his calendar on Monday and will decide which afternoon it will be.  Dr. Grossi told Jen to have their bags packed and ready because they may have to come in on Monday.   Psalm 56:When I am afraid, I will trust in your. In Go, whose word I praise, in God I trust, I will not be afraid.  What can mortal man do to me?   It's only normal to be afraid when you think about our little warrior having to have surgery again.  But once you stop and think about it then you realize it is all in God's hands.  The Drs. are doing what is best for our precious little one and God is guiding them every step of the way.  Beau continues to be a real warrior and God continues to use him each day and Beau's family continues to be blessed each day as well.  So many people are praying extra prayers in the days leading up to the surgery.  God is listening.  I will post an update as soon as we know something on Monday.  Jennifer is working today so pray for her to have a good day at work.  Pray for Beau and daddy today.  Please continue to pray for Beau's surgery and stay in the hospital.  Thanks so much to everyone for your emails and prayers.  They mean so much to Jennifer and Parham.  God Bless!!
Love, Grammy

Good evening all!  Our little warrior is doing great.  He's had a good week and has been been enjoying his time at home.  He and Kayla finally got to play after almost 3 weeks. They were so glad to see each other.  Two of mommy's best friends from high school, Karen and Kimberly stopped by for a visit.  They brought bubbles and you know how Beau loves bubbles. Grandad Miller took Beau and Kayla to a Kinston Indians baseball game last night.  Beau loves baseball and they had a great time.  Mommy had to work today so Beau stayed with Ma.  Tomorrow Beau goes to the clinic to have his counts checked.  Beau has been wide open playing and having fun.  He's received a lot of wonderful messages and prayers from friends in the Winston Salem area this week as well.  It's been a good week!!!  Psalm 56:22  Cast your cares on the Lord and he will sustain you:....  God will sustain us each day giving us just what we need to get thru whatever comes our way.  God is good all the time.  Please pray for Beau's upcoming surgery and that Dr. Pence will be able to remove as much of the tumor as possible..  Continue to pray he will eat and gain weight so he will be strong for the surgery.  Thank you God for the many blessings you continue to bestow on Beau and his family.  God Bless!!
Love, Grammy