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Tuesday, November 2, 2004 12:06 AM CST

As we approach the ninth month since Lukes becoming an Angel we are doing somewhat better in our ability to function.His loss to us in a physical sense is still the most traumatic thing that we have had to endure. We accept the fact that he is gone in that regard but he lives very strongly in our hearts and minds. There is not a day goes by that we don't think of luke. We have chosen to remember the happy times that we spent with luke and although we don't forget the pain we know he is no longer in pain .
His sister and brothers have said that even though Luke is not here he will always be there brother,and I and Gail know he will always be our grandson. Luke taught us a lot about being brave and staying kind amid all the discomfort he was going through.Our Luke does indeed grace the throne of God.
There have been so many children who have passed since Luke and we wish all their families support and healing from this ordeal. To all the Angels we love you and as you watch over us know that someday we will be rejoined.
Love grandma and grandpa Sweet.

Sunday, October 10, 2004 4:08 PM CDT

Our beloved cowboy Angel Luke has been gone from us
for eight months.We accept the fact that he is in heaven
but we still expect him to come through the door any minute. And we have a moment of sadness when the rest of his brothers and sister come in and he is missing. We take
nothing away from his brothers and sister as we love themvery,very much.Likes brother Garrett in fact has many of the same mannerisms and language that Luke had it is uncanny. His inflections when he speaks and his humor and tenderness really brings a lot of memories flooding into our hearts and minds.Grandma sweet in fact watching the boys the other day and Garrett did something that was like what Luke would do and called him Luke before she could catch herself.We went to the boys school last week
for grandparents day anddid some activities with Gabe as Garrett was sick,and then ate lunch after the children sang some songs and this brought back memories because we had done that last year with Luke. Luke loved school.
Last year Luke had gotten two dogs one for himself and one for us.His dog he named Oreo and he told us our dogs name was cindy lou. Last week his dog Oreo died and Madeline said that now Luke had his dog in heaven with him.
Cindy lou still resides with us and is a link with Luke and therefore difficult to not keep her.She seems to be hyper and fearful of being left alone which is sometimes nescessary.Grandma sweet really loves her. Lukes picture on the home page is one of his last taken while he was in texas. We love you Luke .

Sunday, August 8, 2004 12:29 AM CDT

Hello everyone, well today marks six months since Luke went to be an Angel.Our days have become more bearable but we have a hurt in our hearts that will remain forever.There is not a day goes bye that we don't think of Luke. The funny thing is that some of the times are met with laughter and joy when we are reminded of the funny things or strange ways Luke acted,or even the moments when we would catch him just having happiness at doing something and he would not be aware that we were looking. Then of course there those times when the remembrances are so difficult. Also there are times even now when just the mention of his name turns us to unstoppable tears,so we just cry it out. We are noticing Lukes brothers and sister
having a lot of the same mannerisms as Luke;But they are still thier own individual persons. Madeline was having the most difficult time with Lukes passing as they were really close. Myra and the rest of us are working hard to keep her on an even keel. She attended a week of grief counseling put on by our Hospice . She was able to talk openly about Luke and what she was feeling and we think it helped. She sang us a song her mother wrote about children
last night and then she and her mother sang it together,it was actually quite beautiful and they were both in good voice.Chris,Lukes daddy needs Luke to flap his Angel Dust
down on him and help him work through some problems,so Luke you need to fill a bag full and powder him good.
Gail,myra made it to Chicago with the kids and they were very glad they went. There have been so many little Angels going to heaven lately and we pray that each of thier families manage to develope an ability to endure the pain
of thier loss as this loss can not ever be erased.
We hope our Aussie friends can get there much needed convention golng and we pray for the families around the world who are fighting this beast that a cure will be forthcoming very soon. Please stop by Lukes guest book and say hello also click the links to smile quilts and beebo sight for warriors and Angels. We send a hello to our friends James and Austin and wish them well.

Sunday, July 11, 2004 8:03 AM CDT

This coming month will mark the fifth month that our our grandson Angel Luke will have taken residence in heaven. Although the reality is still sinking in it is still beyond belief that he is really gone from us in the physical sense. Grandma Sweet and I can still feel his presence and see him playing on the computer or curled up on the hassock watching Television. He often sat on Grandmas lap and she would feed him and he would eat because he was engrossed in the tv show.He loved to help make eggs and he would help making cookies and cakes and he loved to decorate them with sprinkles-usually more of those ended up on the floor-you know how they bounce. Luke loved taking baths with his brothers at our house here again we would have a load of towels to wash after the bath
its hard to keep this water in the tub you know, is what he would say.So we sopped up with many towels.
Luke was such a loving,caring child and we miss him so much.
Grandma Sweet plans on going to Chicago with Lukes mother in a couple of weeks and hopes to meet many people that have corresponded via the listserv.Luke has met some more angels who have left earth since Luke passed. What a glorious gang of child Angels they must make and to know they all accept each other in love is a wondrous thing.
We love you Luke and if your winker is working give us a blink!

Tuesday, May 11, 2004 9:46 AM CDT

So now its been three months since Luke has left for his new home in heaven. Last thursday his greatgrandfather
on his mothers side departed to go and live with Luke. John Stewart loved Luke and had a wonderful relationship with Luke.John was 87 yrs old. So one of the youngest and the oldest members of our family will be together again.
Grandma Sweet and I miss our grandson immeasurably. There is no way that I could convey to anyone how we feel. At any given moment something may occur that reminds us of luke and it might be funny and we will laugh:But it may be a picture and we can be overcome and breakdown in tears.We feel so bad when we think of all the other parents and grandparents and husbands and wives who have gone through this kind of loss or are dealing with this horrible disease.We visited Lukes gravesite and took out a pot of rose plant that will hopefully bloom for a good while. We set off red balloons and two got caught in a tree and eventually they popped,the others went so high that we could not see them. I am going to change the pictures again. They are not nescessarily Lukes last days just days
in his life.

Sunday, April 18, 2004 7:45 AM CDT

It has been two months since luke became an Angel.Both grandma and I miss him dearly. There is nothing in this house that doesn't remind us of Luke everyday.How he loved to play on the computer,when it was time to put on cartoons so he could watch his scooby doo. Cooking or baking which he also loved to help do.And of course Cindy the hyperactive puppy that Luke brought us,Cindy is no longer a puppy but she is still hyper.Grandma misses slighty and lightly scratching (soft tickle) his back which he enjoyed so much.
This past week we were saddend by the passing of Jordan Luke. We are sure Jordan and our Luke are comparing notes in heaven.I think every now and then that the family of angel children is one awesome family.they were so beautiful here on earth that they have to be exquisite in heaven.Of course they are all well behaved and want for nothing.
Gail and I have decided to try and get some photo place to do an age progressive picture of Luke. We want to see how he would look at 15 and again at 25.
We love you Luke.

Sunday, April 4, 2004 8:23 AM CDT

Our sweet Luke has been an angel for nearly two months and we miss him here on earth terribly.Although we constantly remember the good times and his gentleness often just thinking about luke brings tears and heartache to us. The feeling is overwhelming even after you have told yourself not to cry.It is still difficult to know that he will never come through our door again hollering hi grandma,hi grandpa. At the same time we are making some progress and we are enjoying our other grandchildren immensely.
Chris and Myra have picked a headstone for luke and it is beautiful and full of remembrances of Luke. It will only be about 50 feet from the side door of the church he loved to attend.The cemetary is old and the mix of the older stones with the newer ones lets us understand that memory is longer than life itself. So we will make sure that memory of Luke is instilled in his brothers and sister.
Luke donated his corneas and the transplants were sucessful for both recipients. It is wonderful to know that Luke even in death helped two people to see. They are going to plant a tree in Lukes name in San Antonio tx this month.We have a little joke about his donation in that the recipients must endure many reruns of scooby doo.
As a family we were amazed by the number of lives that Luke touched during his short time on earth. There were over 700 people who came to the viewing to say there goodbyes to him.Luke brought joy and laughter to all who knew him.
We as a family want everyone to know that we pray for all the other families who have to battle this cancer and that we wish them the greatest hope for complete recovery.
Luke we love you. Grandma and Grandpa Sweet.,Mommy and Daddy, Sister Madeline, and brothers Gabriel and Garrett.

Tuesday, March 2, 2004 9:18 PM CST

Luke touched many lives during his short stay on this earth. Luke died one day short of his sixth birthday.
He and his family had gone to texas in order for him to be a real cowboy. With all of the strength he had Luke on Saturday was able to put on his cowboy outfit complete with spurs and mount and ride a horse a short distance.Mission accomplished. He passed away Sunday afternoon in San Antonio texas at Christa Rosa childrens Hospital.
We do not know why God takes our beautiful children away from us so early/ What we do know is that Luke had no sin and was as pure a soul as there ever was.
Luke endured the pain of neuroblastoma for almost three years. He fought a gallant fight and has taught many how to bear with dignity all the difficulties of living with a terminal illness. there is someone on this earth who gained the gift of sight and is now able to see through Lukes eyes.
Luke will never be forgotten and will live in our hearts forever.

Tuesday, February 10, 2004 9:09 PM CST

Well this is the last journal entry I will be able to write concerning Lukes activities. An Angel was given wings on Sunday in San Antonio Texas,our Angel,our beloved grandson Luke Sweet.Luke was with his immediate family and
cousin Matthew when his soul and spirit escaped his pained body and went free of that pain to heaven. God had mercy on Luke and refused to let him suffer any furthur.God knows what a pure soul he has recieved into heaven and will use Luke as an angel to save other souls. Luke was always such a sweet warm child and even toward the end if he got angry from the pain he would apologize and you knew that his pain was the reason he had gotten angry.Luke had the most inner strength of anyone we knew.He would not complain about his hurts and would always say he was fine.Luke was the epitomy of love,with kisses and hugs and happy hellos.Luke will come to us and heal our broken hearts. For it is not he that hurts but us and we only know earthly things. He will show us how it is in heaven.We await you angel Luke.
The trip was an excellent one and mom and dad said that
even with the outcome that happened they would do it again. They said they achieved a family unity that many only dream about and they might never have known if it wasn't for this trip.This was Lukes legacy to them. If you think about it think how much inner strength Luke had to have be able to withstand such an arduous trip being as sick as he was.
Luke finnally was able to get astride a horse adorned in all his cowboy attire on Friday. He was only able to ride a short distance but he was a cowboy.
On Thursday and again on Sunday the Drs. at Christus Santa Rosa Childrens Hospital were wonderful to Luke and his family.
Also the Limousine driver they had went beyond the call of duty and babysat the children and helped Chris and Myra which they greatly needed and appreciated. To our suprise luke is not only a cowboy but had also recieved an indian passing ceremony that the Clay Conley family and his gracious staff performed in the cabin and bed. This ended by laying to rest an Eagle feather facing west. Soon they will have a memorial to Luke forever to soar over the dixe dude ranch. Thank you to all that have signed and please don't stop.

Tuesday, February 3, 2004 8:14 AM CST

Howdy pardners, saddle up we got a lot of ridin to do.
Well ,there off to become real cowboys and cowgirls. Luke, Myra and grandma Keener and little brother Garrett had a long day monday. They took Luke to clinic thinking that since he had platelets last thursday and the monday before that he might get some fluids and the visit would be relatively short-wrong they spent twelve hours at clinic.
Lukes platelet counts were down to 14,000 and he needed blood and fluids So as you all know these are time consuming items. Also they needed him to give a urine specimen and he didn't go untill about the eigth hour and when he did he only gave 100 cc. So it was decided that he must have more and they put a catheter in him. The result was that he didn't have any more to give and when they decided to remove the catheter it wouldn't come out. It took them about an hour and ahalf to finnally get it out.
I understand Luke looked at the nurse and said to her -what do you say?. She said I'm so sorry Luke and he said okay.
The Drs. and Hospice have setup an appt.for Luke at childrens hospital in San Antonio for thursday so that he can get hydrated and perhaps more platelets. Hospice also made sure that Chris and Myra had plenty of medicines and supplies to take with them.From a medical standpoint we are very pleased and appreciative for all the help and forsight given by Hospice and the Drs.to make this trip as successful as possible.
The kids have red cowboy boots and they have thier cowboy hats. Gabrriel wants to know if you really punch a cow? He holds his fist up and states he is ready.We want to thank cousin Matthew for going along to help with the children. Matthew is a very nice young man knows his manners and comportment is important. We hope he enjoys himself and has fond memories from this trip. Grandma Sweet rode up with unle Matt amd aunt Julie and grandma Keener to the airport
to see them off on thier trip.Grandma Sweet would have loved to go but it just wasn't possible at this time. Now we start to worry that everything is going ok and anxiously await thier return. We expect to see some great pics when they get back which we will share with you all.

Wednesday, January 28, 2004 12:02 AM CST

Monday Myra and I took Luke for his last radiation treatment for his eye and then over to clinic. The weather was just awful.Grandma sweet stayed home and babysat Gabriel and Garrett usually what I do. She definitely had her hands full. At clinic we met with the paa;iative care Drs. while we waited to see Lukes blood counts.The Drs. also spent a lot of time talking to Luke. It became all our judgement that Luke was not getting enough dosage of pain medicine from his automatic dispenser. The decision was made to have hospice increase the dosage and then monitor to see if it was enough and did make a difference. Tuesday
morning hospice came and made the adjustment. During the day it appeared that Luke was doing a little better and he even ate a little bit. On wenesday Myra said he was better but she thought that he could still stand a little more increase in medicine,so we go to clinic on thursday and we will see if the Drs. agree.
We are hopeful that by next monday night Luke is feeling painfree enough to take his trip to Texas to be a "real" cowboy. The family is scheduled to go to a dude ranch outside San Antonio. Lukes 16yr old cousin Matthew is going along to help with the children. They all love him and get along with him well.He will be a big help. We are hopeing that Luke can enjoy this trip.Arrangements have been made with Hospice and a Dr. in San Antonio if intervention should be needed. Madeline,Gabriel and Garrett are all excited about the prospect of being cowgirl and cowboys. They have thier cowboy boots and hats and jeans and are ready to ride!This trip is being sponsored by the Alladin group from Akron and was arranged by the social worker at the Akron Childrens Hospital. We thank them very much . Both Grandmas would like to go but are not up to hiking or riding horses at this time in there life so we await the videos and the pictures.
The trip was hurriedly put together we just don't know how long Luke will be well enough to go.

Saturday, January 24, 2004 9:37 PM CST

We promise you Luke that we will do everthing we can to keep you as pain free as possible. It was with this commitment that we held a family meeting with hospice and after a question and answer period along with the Drs. suggestion we signed Luke up with the local hospice. We are assured that Lukes palliatve care Dr. and his oncology Dr. still have the authority to prescribe and treat him with the hospice nurses doing the administering of medications.
They are of course in contact with Lukes Drs.and will keep them updated;But luke will still go to clinic as long as he can make the ride. Hospice primary care is to keep Luke free of pain and help with his medical needs at home. That afternoon after the meeting the hospice nurses came and met Luke. Lukes palliative care Dr. suggested she would be more comfortable if Luke had a pain pump he could wear rather than trying to administer by spoon or pills on a time basis.
They then outfitted Luke with a machine to give him automatic infusion of morphine every so often. Luke also has the option to add a dose once every fifteen minutes if he feels the need.
Luke was feeling a little better and actually walked around a little. You could still tell it was difficult for him but at least he did it. Luke has lost another two pounds and is now weighing 34 lbs. If he doesn't start eating pretty soon we will have to look at some alternate way to get him nourished.
Luke and his family plus his cousin Mathew hicks are scheduled to go to Texas to be a texas cowboy on the third of February.We are playing it by ear and hoping he is well enough to do this trip. He really wants to be a real cowboy so we are hoping that his will power will be strong enough to make this trip happen.
Lukes chemo angels husband and son are crew members on carl spears' race car team of speed graphics racers for christ and they made Luke an honorary team member in 2002-2003 race year. They wrote to him and said that he is still a team member2004. Luke loves racing and actually got to ride in the car when he visited his angel vickie and clint and curt in august of 2003.I understand Luke said it was his car but it was okay that they drove it.Thank you Carl,Curt, Clint for your thoughtfulness. Vickie we love you and thankyou for all your love and support.Our prayers are with Aron in his fight for life.
Luke and the entire Sweet family appreciates all the support given by the listserv members and the personal e-mails and phone calls that we have and continue to recieve. We thank everyone who has signed the guestbook for Luke with there hellos and best wishes.
Tomorrow is Lukes fathers birthday and we have snow outside so we are going to attempt to go to aunt Julies for a sledding party,here again it depends if Luke is up to it or not.

Tuesday, January 20, 2004 8:29 AM CST

reality is really setting in. Yesterday grandma and grandpa
sweet took luke to his radiation treatment in akron at akron general hospital. normally this treament takes about ten minutes and luke usually has no problem laying still.
this time he was hurting all over and it seemed that wherever you touched him he said it hurt.he gets radiation on the front and back of his skull,front and back of his left leg and on his spine at the pelvic area. this time the treatment took about anhour and a half. we left general hospital and went to childrens hospital to see his drs. at clinic in order to get him checked and get his pain medication adjusted. during our visit to the clinic luke got sick to his stomach,the poor kid didn't have anything to throw up except a lot of phlegm. sue had to access his port in order to give him some zofran to quiet his stomach down. then we also gave him a bag of fluid to hydrate him.
this whole process took about three hours and we finnally started home about five-thirty. while we were there we got the latest report on his migb scan. unfortunately when we compared the sept scan with this january scan there was progression of metastasis. He still has five more radiation treatments to go and we are still hopeful that it will have some positive effects on lukes cancer. although the january scan simply states a progression what you see when you read the full report of septembers scan you realize just how full his little body is with this cancer.it is just everywhere.He remains on palliative care and we remain wishing for a miracle.
Luke is scheduled to go to texas to a dude ranch to be a cowboy which is what he says he wants to be;However we are not sure how well he might tolerate this trip by the 3rd of february. He is starting to have more difficulty walking and
wants to be carried most of the time.I guess we will just have to play it by ear when the time comes.
luke is defintely a spartan and he will come home with his shield or on it. he is so brave !
Grandma sweet is still waiting for St. George the dragonslayer to come and kill this dragon forever for everyone.

Sunday, January 4, 2004 9:25 PM CST

The new year is underway and so we have hope and expectations that this year can be better than last year.
The friday after christmas we had to take luke to the hospital to get a head scan. He was continueing to grow dark circles around his eyes. Pat Tullengen was right it was because he is still experiencing tumor growth in his head. The drs. have stopped the relapse chemo treatments for now and we are going to treat him with radiation. we don't know how long these treatments will last. oN JANUARY 13TH QND 14TH LUKE IS GOING TO GET AN MIGB SCAN TO SEE HOW THE REST OF HIS BODY IS HANDLING THE CANCER.We started him on beta glucan a week before christmas and he does seem to be eating a little better. his blood counts seem to be at a good level at this time. He has admitted that he does have
some pain now in his hips and he cant walk as far as he used to.
Chris and myra and the grandparents Harold and Nancy Keener all went to North Carolina for the new years weekend to see the childrens aunt and uncle Kevin and Donna Keener. They video taped a lot of thier activities and it looks like everyone had a great time.They stopped at a hotel on the way down and had pizza new years eve. the next morning before they left they took the children swimming, the kids just love the water.luke can't stay in to long because he gets cold to quickly. Uncle Kevin had built his boys a pirate ship in the backyard and even had a rope fixed so that the kids could swing and board the ship.They also had swords pirate hats and even eyepatches they looked like the real thing. the kids went fishing and even got to drive the tractor with grandpa keener. On the way home they stopped at a miniature car track and let the kids race around the track. All in all the family had an enjoyable christmas and new years holiday.We are most thankful. we continue to pray for all the others who are battling this atrocious disease and wish them well for the coming years.

Thursday, December 25, 2003 11:29 AM CST

Well today is christmasday and Luke was home to celebrate the day with his family. Both sets of grandparents went to his home to watch the children open thier presents. They all were pleased with thier toys and clothes and books.
We are going to have christmas dinner about 3.00 p.m. Then all his cousins and aunts and uncles will exchange gifts.
Considering that Luke was in the hospital until late tuesday everything turned out well. Luke had gone on a normal visit to clinic friday and seemed to being doing okay but just before he was to leave he started running a fever and appeared very lethargic. So the dr. decided he should stay in the hospital and it was a good decision because his blood pressure dropped quite low. They started luke on antibiotics right away and started trying to determine what was wrong. Over the next couple of days luke was up and down. Sat night his blood pressure fell very low and he recieved a transfusion and lots of fluids . Sunday and monday his pressure started to get back closer to normal;But they still hadn't grown any thing in his cultures. Tuesday morning the dr. came in and said that he had influenza.He was feeling a lot better and they stopped
the antibiotics and said if he ate and drank he would be able to go home tuesday evening.
we were able to see from the comparison of the scans that at least there didn't seem to be any additional growth in the tumor in his belly,and we wont know if it is active until he gets migb scan in january. He did show some black and blue area around his right eye but we don't know if that is due to the tumor in his head or just from being sick and straining. all in all we are happy that luke was home with his family and we will deal with tomorrow when it gets here.

Sunday, December 14, 2003 10:08 PM CST

Up until last monday things have been relatively normal. Luke has shown some slowing down in energy level and his appetite seems to come and go. His general attitude though has been good and he plays with his brothers and sister pretty well. He has his moments as most kids do when he can be somewhat testy and mean.
We had our first snow of the season a week ago and so we all went down to aunt Julies and Uncle Matts for an outdoor cookout (eaten indoors). You know hot dogs and hamburgers and then the kids all went sled riding and the best part was they got pulled on the sled behind the four wheeler. Cousin Matthew and uncle Matt both took turns pulling them in the field next to the house. It was great and the kids managed to stay on the sled most of the time. Cousin Brooke rode with the kids to help make it safer but the truth be known she had a great time also. Uncle Matts dad (Jim) and stepmother (Sandy) were there from Toledo and we all celebrated cousin Mathews 16th birthday (Dec. 6th). Cousin Jordan was there also and had a goodtime, although she got a little colder than she wanted to and felt like a block of ice,when your having fun you just don't want to stop.
this last week Luke had to do his outpatient chemo so off to Akron we went. Grandma and Grandpa sweet stayed with Luke Mon,Tues, and Wenes, then Mommy Myra,stayed wenesday night through fri afternoon. During his outpatient stay Luke got a half of a flu shot and is scheduled to get the other half this coming wenesday.Well Luke came home late friday afternoon and by 7:30 p.m. he was running a fever of about 102 so Dad called the hospital and Dr. Patton told him to bring Luke to the hospital. Luke had been complaining a little about his tummy hurting . Well dad and grandpa sweet went back to Akron with Luke and they admitted him and started him on some antibiotics. He did develope some diahrea and was sick to his stomach that night and into sat.The Dr. took blood and stool cultures and by sunday afternoon he was feeling a lot better. The Dr. said if he kept his food down and nothing showed up in his cultures he could go home late sunday afternoon. Luke got home about 6:00p.m. and said he felt pretty good. It must have been one of those short term bugs. We are all thankful that this was the extent of it.

Monday, November 24, 2003 1:40 PM CST

Hello everyone,
the past week has been up and down. Not a terribly bad week but not the easiest either.this past monday Luke had to go to Akron to continue his relapse chemotherapy. He arrives at clinic about 9:00 a.m. and generally we are done between 5:00 and 5:30 p.m.Grandma and grandpa sweet stayed with Luke for the week. I don't know what we would do if it were not for the RMH they are simply fabulous. We would probably have to drive back and forth each day not an impossible task but one that makes you even more weary.
As Gail says when you stay at RMH you get more than just a bed and a meal. We have met many wonderful people there and it is great therapy for all to be able to talk and see what others have to go through. Unfortunately two premies were unable to overcome their problems and it is heartwrenching to see the pain in the eyes of the parents.\
The excitement for the week for me was on wenesday evening. Luke was playing with his friend Drew and all of a sudden he starts grabbing at his implanted port and saying he hurts. Well its eight oclock so the outpatient clinic is closed. So I take him over to the fourth floor oncology unit and the nurses took it from there. The access needle had pulled out of the port and everytime he moved the needle would prick him.The nurses removed the tape that held the needle to the port and we decided to just wait until thursday morning to reaccess the port.Luke knows all the nurses on the floor and he had some routines with some of them during his original seven months stay with them. Luke along with his chemo also gets some steroids and it makes him pretty wild. Well I think it also makes him quite precocious. He was all over Beth like a peel on an apple.
I'm standing there watching this action in total embarrassment and Beth is giggleing and dancing all over the place. She finnally got Luke settled and we returned to RMH. the rest of the week there went okay and we came home Friday evening.
Debbie and Nancy (ladies who work with Gail at Kellys Deli)
threw a party for Luke and his family and friends Sunday evening. They rented the carousel in Mansfield for two hours and every one got to ride the merrygoround a lot. they also had Santa pay a visit to the children and had food for everyone. It was really wonderful and all the children loved it (and so did the adults). Some of the patrons at Kellys also donated somethings and we want to thank Gary and Harriet for coming to the party and what beautiful packages they wrapped. Becky your salad was great
next trip to clinic is wenesday to see how his counts are doing. I almost forgot Lukes cousin Brooke came home from Lackland airforce base wenesday night and it was great.She has been gone since July. She is an airman first class for the moment, she is in the military police.

Sunday, November 16, 2003 10:47 AM CST

This last week has been a pretty good week for luke and his family.Grandma Gail is starting to come up from the land of limbo. We got good news in that Lukes tumors although not gone have shrunk. Also all of his lymph nodes that were swollen have returned to normal size. We were all waiting with an uneasiness on this report because we didn't know if the tumors would respond to the chemo again. I guess with relapse you take what you get and keep on trying something else. Well now we know that we can continue with the chemo for several more rounds and then scan again.
LUkes Dad started another job last week and all of us think it has been good for him.
Luke had gone to the Dentist to get a checkup and see if he needed some work done. Well he does but this dentist can't do it because of Lukes condition. The akron childrens hospital set up an appt. for luke this coming week just for another check and see what really needs done. The dentist did have a surprise for Luke and his family. He knows a flight instructor who is a friend so he contacted him and set up airplane rides for Luke and his brothers and sister and mom and dad. Saturday morning we went to the local airport and took those rides. Mr. Mike Wilson was the instructor and pilot(a very nice man). The kids had a real good time and grandpa sweet taped the ground part of the flights and mom and dad taped the inflight reactions.The tape came out beautifully. We didn't know it but the flights went right over Grandma and Grandpa keeners farm so the family got to see and tape it from the air.
The family puppy they got several weeks ago did manage to nip Garretts ear and it hurt. That was probably the worst thing this week-not too bad! Off to Akron in the morning for the next chemo and stay at RMD house.I almost forgot aunt Julie met us at the airport (she was on time) and helped take pictures and helped with the kids, thankyou aunt Julie we love you.

Monday, November 3, 2003 7:39 PM CST

this entry is for the week ending Oct.31,2003.
Luke had two visits to clinic at Akron Childrens Hospital. One on Wednesday and one on Friday. On Wed.
Chris and I took Luke to clinic and found out that his counts had dropped dramatically. So Luke ended up getting a pouch of whole blood. Other than the fact that it turned out to be a very long day. We had gotten to Akron about ten and got home about seven that night. It is only about a forty minute drive,we are lucky in that regard.
On thursday Grandma Keener got the children a puppy dog.
It is part lab and part ?. The dog is mostly blended of white and dark spots. They named him oreo. The children were tickled to tears. On friday Chris ended up taking Luke and Gabe to clinic by himself. Grandma Sweet was going to go but a coworkers husband had had a heart attack thursday night so gail went to work for her. As it turned out Luke and gabe dressed up in halloween costumes and chris did too. they had a good time at the hospital. I guess all the hospital staff had gotten dressed up also.
Luke recieved a bag of platelets but it went a lot quicker than wenesday and they were home by 4:00 p.m.. Lukes next visit to clinic will be next wenesday. Luke has a special friend ( Mark Arrondondo) a med student at neonuocom medical school. Luke met Mark during his first chemo therapy
at Akron. Later after luke was ned he got invited to come to the college for a luncheon for the Red Cross and Grandma Sweet and Grandpa Sweet gave a short speech on the value and benefit of giving blood to the Red Cross. It was a very nice luncheon and Luke met the University president and the Northeast Red cross Representative. Luke was excited that he partook of an event at college so he will tell you now that he went to college. Well Mark and the President of the University sent Luke an Honorary certificate of special friend of the University. Luke has it on his wall by the fireplace. So we are all proud of Lukes college certificate
and hope that he may someday continue his college years.
Last thursday Myra and the kids decided to get grandma Sweet a puppy also so they got a sister to the dog they got from grandma Keener.Luke named it cindy,. Grandma Sweet says itis cindy lou from whoville but Luke says its just cindy. Now they have a dog at both their house and grandma Sweets house and they look forward to playing with them both. On Sunday we had dinner with the kids at the place where Grandma Sweet works. Luke wanted grandma to cook his dinner but grandma was able to persuade him to let the cook do it. Gails coworkers hadn't seen Luke for a while or the rest of the children either for a while so they were pleased to see them all.Luke has his picture on the wall at kellys and when he was asked why he says its for the girls.

Sunday, October 26, 2003 6:38 PM CST

This is Lukes update for the week of Oct.20th-26th.
On Monday Luke had to return to Akron Childrens Hospital for another week of chemotherapy. Chris took Luke up on Monday and got a room at Ronald McDonald House. Lukes chemo was set to be done as an outpatient. So then they went to clinic and basically spent the day in clinic . That evening they returned to the house and spent the night. Then the next day they repeated the routine.On Wenesday morning Myra and Grandma Sweet went to the hospital to take Chris' place and let him come home.Myra and Grandma stayed with Luke the rest of his treatment time . Grandma Keener and Great aunt Barbara came up thursday and spent the day with Luke.Grandma Keener brought him a happy meal and snack items like popcorn,doritos etc.Luke was happy about that.
Luke was given a steroid with the chemo and it made him become very nasty at times. The Dr. finally agreed to cut his dosage of that in half and that seem to level him off.
Luke made a friend on Monday,His name was andrew,(Drew) and they hit it off really well. Drews 31/2 yr old brother Kyle was in the hospital and the family was also staying at the McDonald House. Drews sister Gracie turned one on friday and they had birthday party for her. Drew had batman pajamas and Drews parents and Grandma bought Luke a pair of superman pajamas and the movie George of the Jungle 2. They had a ball playing batman and superman. It was great to watch. In the morning Luke told Grandma Sweet she could fly
and tucked his cape in the back of her shirt and told her to fly. Un fortunately Grandma could only flop.
During the week Luke had also met another family who had a baby in the hospital. Jonathon the father had been talking to Luke during the week about getting his head shaved like Lukes. When Jonathon found out Luke was leaving Friday he asked Luke if he wanted to shave his head. Luke got all excited and said yes. So Myra,Luke, Jonathoin and his wife all headed upstairs. Jonathon put Luke in the bath tub and proceeded to let luke cut his hair off.Luke had a ball!
Everyone at the house thought that this was a special gesture by Jonathon.It seemed that Jonathon and Luke had made a special connection.Its not every day that you get to shave someones head.
Saturday aunt Julie and uncle Matt brought cousin Eric, Nicole(his girlfriend) Cousin Jordan (our greatgrand daughter)Julies grand daughter,Tyler and katy(nicoles children)up to lukes and they played while Julie gave Myra a perm. Jordan is really good soccer player (averages 8 goals a game)and she once told Luke to be careful of his tumor and he told her his tumor was fine not to worry. Jordan is six and loves playing with Luke and the kids and is always concerned about Luke.

Monday, October 20, 2003 3:31 PM CDT

Well,today I am updating Lukes journal for the weekend of Oct.17th-19th. We all had a ball. There was drama,comedy,
and fishing!! Let me start with the drama-Aunt Julie,Grandma Sweet and myself(Grandpa Sweet) in one car and
Daddy (Chris) Mommy(Myra) and sister (Madeline,) brothers (Gabriel and Garrett)and Luke in the family van.Aunt Julie took the lead because she was most familiar with the road.
We were making good time and had gotten into New York State
about 3:30 p.m. we were 16 miles from Jamestown when all of a sudden Julie slows down and pulls off the road.She said Chris had a blowout. Well Chris did a marvelous job in controlling the van considering he was doing 65 m.p.h. So we pulled the two vehicles together and got ready to change the tire. Chris' van had like a continental unit for the spare and wouldn't you know it was bolted so that we were unable to get to the tire-that is we had no wrench to unbolt it.No problem Chris and Myra have Triple A so we'll
just call them and they will send someone out to help. Ha!
After several conversations with someone at AAA we pretty much had the idea we weren't going to get help any time soon. In the meantime Grandma Sweet had called the police and explained our predicament and there answer was they couldn't help us. Night was falling and it was getting colder so Julie went to start her car to get the heater going and wouldn't you know it won't start. So now we have two disabled vehicles. Grandma Sweet grabs the phone and saya maybe I'll go to jail but the police are going to do something. She called them again and they finnally agreed to send a police car and a wrecker out to us. The driver of the wrecker was a wonderful man who was 75 and said he had six grandchildren living with him and that was why he was still working.He and his helper got both vehicles running and he even accepted the triple A card. It had started to rain during the fixing. The delay didn't bother the kids they got too wee in the fields.But they all tried to escape
but we managed to keep them corralled. It was just a little nervewracking for the adults. Undaunted the women folk said lets keep going and we will find a place to eat. We found a great place in Falconer at Honest Johns pizza joint-the food was excellent. We came out of the eatery and both cars started and still had four wheels so on we went.
I think we got into uncle Lees about 1:30 a.m. and we had coffee and doughnuts. Chris Myra and family went to cousin Lisas for the night and we all agreed we would meet the next morning for the fishing. So saturday morning about 11 a.m. we met at Lisas. Lisas husband (John) and his brother(pete) already had the fishing poles out and ready to go.
The kids had a ball.All the kids caught fish and and threw them back. I think they fished for several hours. Garrett says his fish was about an arms length big and aunt Julie claims her big one got away with hook,bobber and worm.
After fishing Lisa had prepared a great meal,with the help of uncle Lees wife (Dorothy)and cousin (Amy).
Uncle Lee had some left over fireworks from the fourth so the kids all sat on the upper porch and we pleased with the noise. The kids played and played. A funny thing happened Lukes hair had started to fall out and Luke had told his little brother Garrett to pull his hair and it would come out.Needless to say mom and dad decided to buzz Luke and Gabriel wanted to get his buzzed also so we have to closely cropped boys. Around six we all left to go to uncle Lees.The kids played down cellar and some watched some of the world series. We had pizza and chicken wings and then we all left for our rooms for the night. We met sunday morning at Lees for breakfast and got on the road home about 12:30 p.m. The trip home was uneventful (thank God)
and we got home about 8:00p.m. We watched video this morning and we are so glad almost all the video came out beautifully.

Wednesday, October 15, 2003 6:53 PM CDT

Yesterday was not too good a day for Luke. I think he just didn't feel good. Today luke had to go back to clinic
. The trip went well. Lukes Grandma Keener and his mom took him there. His counts were up and he didn't need to get any additional platelets or blood. In addition to this he can stop the nightly neupogen shots for now. He will return to the clinic monday for his second round of chemo. He will recieve the chemo as an outpatient for the next four days after mondays start.
This weekend however we got the okay to take the family to Waverly New York to see their aunt and uncle and cousins.
Uncle Lee and aunt Dorothy,cousin Lisa and AmyJoe. Its about a seven hour drive. Uncle Lee has planned a big fishing frenzy for saturday at the "old pond"!!! Fishermans tales told on next journal update. the old pond is at cousin Lisas and her husband Johns house.

Sunday, October 12, 2003 7:32 PM CDT

Saturday,oct 11th was a good day for all. Myras brother and sister-in law andchildren were visiting from north carolina. So the family went to grandma and grandpa Keeners for a picnic.
Later in the day aunt Julie invited the children ,mom and dad and uncle Todd and grandma and grandpa Sweet down to play and roast marshmallows. Well the children had a ball. Uncle Matt,Julies husband, cleaned out the garage and built a little ramp so they could ride and jump their bikes.Luke, jordan,madeline and gabriel all rode bikes Garrett rode on a scooter. they played really well for quite a while. Meantime Julie and Matt had built a bonfire and when the playing was over the children except Garrett who went to sleep on Matts lap,. all roasted marsmallows. the funny thing is that the kids didn't really want to eat them and so grandma Sweet and aunt Julie had (plenty). Luke seemed to have to catch his on fire and watch them turn to charcoal
and then let grandma eat them. One or two actually glowed red for five minutes after they were taken off the fork.
Luke is really enjoying riding his bike again now that he has his cast off. Also his right eye is more open almost all the way-it appears as though the tumor over his eye may have shrunk.

Friday, October 10, 2003 6:50 PM CDT

today luke had another clinic visit. he was supposed to get a transfusion and platelets. he only had to get platelets, his counts were coming back up so the visit went well and he got done early. grandma sweet said he was just wonderful in his behavior today. the drs. and techs were getting hugs and winks. later today lukes mom called and said he was outside riding his bike-isn't that great! also, early this afternoon 2 of lukes teachers came to the house and spent some time with him. they are setting up a routine visit so that he can maintain continuity with school or at least the association with school. today seemed to be a good day for luke and therefore a goodday for his family.
taking one day at a time. a lot of people have told us luke is on their prayer list believe in the power of prayer.

Wednesday, October 8, 2003 7:47 PM CDT

Today was clinic day for Luke. Daddy and Grandma Sweet
took him to Akron.He put up a little squabble and were not sure if it was just that he didn't want to go or if he was
fearful that he would have to stay once he got there. He was told it was just a clinic visit with Dr. Patton (his chief oncologist)and then he calmed down. On the way they stopped at McDonalds and Luke ate a hash brown,part of an egg mcmuffin and drank some orange juice.
Dad and grandma both were feeling apprehensive about this visit to clinic because Dr.Patton was going to go over Lukes latest migb scan.DR.Patton siad it was even worse
than she had anticipated, his little body was full of hot spots. As a result she increased his pain medication. his
blood counts showed that they were headed down as a result of his chemo treatment. He is not allowed to go to stores or be around a group of people for now. His next clinic visit is Friday when he will recieve platelets and a blood
transfusion. His next chemo treatment will be done as an outpatient and he will spend the evenings at the Ronald McDoald house. "God Bless that house" .
After clinic was over today Luke went over to the Ronald McDonald and Sarah (the manager )let Luke feed the fish.
He wanted Grandma to feed the fish he said because the fish tickled his fingers and he wanted her to feel the tickle.
Thanks to all who work and support the Ronald McDonald houses they indeed help make life more bearable during these
hard times.

Saturday, October 4, 2003 10:57 AM CDT

luke was dx with stage iv neuroblastoma on july 25th,2001.
he was then three yrs of age. he was admitted to akron childrens hospital the same day. it took several days to determime the exact type of cancer and the amount it had spread throughout his system. drs. patton,tulai.kurbitz,and
hord then presented the treatment options. it was decided that lukes protocol would be that of 3793. luke went through three rounds of chemo and then had surgery to remove his shrunken tumor on his left adrenal gland along with the adrenal gland. then he was given more chemo. luke
had his stem cell harvest prior to surgery so after his fifth chemo he was allowed to skip the sixth one and was gtven his seventh chemo and stem cell transplant in jan of 2002. he also celebrated his fourth birthday in february.all
the nurses and drs. and family were there to help him celebrate-it was a great party. luke went home on feb.19th. and then returned for radiation therapy daily. after that luke was started on accutane . shortly after starting accutane he got shingles on his face around his right eye.
he had to go back into the hospital because it was so severe.he was given an migb and declared ned. he remained ned for about 15 months. he had an migb scan on june the 4th
2003 and he was declared still ned. in july we discovered a bump over his right eye and took him to akron hospital where we were told he was in relapse and his little body was full of neuroblastoma cells and he had another tumor in his left side.he was started on etopiside and vancristine which will last approximately five months if it seems to be having any effect. he is presently at home .

Friday, October 3, 2003 9:53 AM CDT

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