History

Tuesday, December 26, 2006 8:42 AM CST

Hi All,

I hope you all had a blessed and merry Christmas.

December 19th was the four year anniversary on the diagnosed of leukemia for Joshua. If you are new to Joshua's page, and want to read about it just go to our first journal. We thank God that Joshua remains leukemia free. It was great to see him healthy and at home opening Christmas presents and not in the hospital. That was such an intense time for me that every year starting with the day after Thanksgiving I still think about all we went though in December 2002.

Joshua is doing well as far as naps are concerned- no naps. I think just being out of the house tires him. We also let him sleep till he wakes up in the morning, which I am sure helps.

He has been hurting and taking more methadone a half of a pill, 2.5 grams which isn't much yet cuts the neuropathy pain.

Joshua went to the dentist. He had X-rays and it showed that his four wisdom teeth, which started to come in this past year are not doing a very good job at it and will have to be removed. One is totally sideways, the top of the tooth in the gum and the side of the tooth pushing upwards. We will talk the Dr. Frangoul in January. I hear they put kids 'under' for that and that is what I want for Joshua. I know he could not deal with the pain.

Sam continues to heal just a little more slowing than usual. His kneecap is SO puffy that they had to wait an extra two days to take out the stitches. Even after that he still has to have on the butterfly bandaids because they are afraid of the area splitting open. We are waiting till January 2, for the therapy to start. The waiting is two fold, they want to keep with one therapist and the knee is too puffy to really work out yet. Sam does a little exercise for the leg at home but mostly lies on the couch with his leg resting on pillows. His leg has to be higher that his heart. (Joshua has to give up the couch) We still have to ice his knee. (no big deal any more getting the machine ready for him.)

Les and Joshua took care of Sam with the machine mostly in the beginning for I was busy outside of the home at that time. It also gave me times to get my bearings concerning the medicine and to see how to work the ice machine. It is not hard, I will say now. My brain was on overload I guess.

Getting Sam ready for his showers wasn't too bad either. I just wanted to remember everything the nurse said. Sam does not need any help now.

Between Les, Sam, and I along with having the directions for care of the knee we all did quite well with everything that was suppose to be done.

We had a wonderful family Christmas. On Christmas Day we went to see the Nativity. We all enjoyed it.
God is Faithful,
Blessing to all of you,
Love,
Leslie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Friday, December 15, 2006 9:54 PM CST

Hi All,

Sam's surgery went just fine, thank God. It took about an hour. Dr. Elrod put his kneecap back in position. In doing that he tightened up the ligaments that hold the knee cap in place. He also smoothed out the lower part of the knee that had a 'dent' in it, it was crushed bone. To get it to grow back they drilled holes in it to get it to bleed and then repair and heal itself. He did one more thing but I don't remember, I will get it on Tuesday when we see him again.

Sam was a groggy boy and it took a couple of hours to get him up and out of there. Part of the problem was he had some nausea and was given medicine to stop the nausea it worked but one of the side effects was drowsiness.

Sam is home and his leg is wrapped first in an ace bandage then he has an electrical ice pack on and finally the calf to thigh brace, quite a get-up. He needs to keep his leg elevated till we see the doctor on Tueday.

He is taking three medicines and we have to hook and rehook him to the electrical ice pack. We have to also be VERY careful in helping him get up and down. There are special things to do when he gets in and out of the shower also. Personally, I am a little overwhelm and I am glad Les is home and helping out a lot with Sam. I feel I am back at the Ronald MacDonald home when Joshua first got out after the transplant. Just a lot to remember.
Our doctor was very good and nice but talked so fast I just felt like I did not have enough time to process everything he said. He saids this though everyday and is very knowledgeable about all of this but it is new to me.

Joshua has had a pretty good week. I still drive him to Spring Hill and he had had some good naps but other than that he has been doing well. We did not get the Ritilin. Our insurance would not pay for it because they felt it was a strange request in light of what Dr. Frangoul wanted to use it for. Right now we are taking that as an answered pray as not get it at least at this time. Joshua seems to be doing o.k. so we want to wait on it.

Thanks for checking in,
God is faithful,
God's love and ours,
Leslie and the family

Thursday, December 14, 2006 10:25 PM CST

Hi All,

I will write more on Friday. I want to let you all know that Sam is getting knee surgery this Friday the 15th. His kneecap dislocated again in late October or early November. Swelling on the knee ensued. A MRI showed the kneecap was not sitting where it belonged and the ligaments were stretched. Surgery, will be done by one of the Titians' doctors, no less. We were told it is the only way to fix this problem.

Hospital call time is 6:30 a.m. It is an outpatient procedure. They will put him 'out' for this. They will even give him 'freezy spray', this numbs the skin before they a put in the I.V. into him. Now, we would never of known that but for all Joshua went through.

Thanks for your constant prayers,
God's love and ours,
Leslie

Monday, December 4, 2006 12:25 AM CST

HI All,

Joshua is fine after his bout with the flu. The only thing is that he lost four pounds. I will have to fatten that boy up again.

We had our clinic appointment with , as Les says,” The good doctor.”
(Dr. Frangoul) on Friday.

Joshua had eight tubes of blood taken . He said, “ I think they should give me a blood transfusion." They took an extra four tubes because the endocrine doctors requested it to check lab works for them.

He has been taking the hydrocortisone since November 11 and the Synthroid since November 13, and we have not seen a overall big change.
There are times, about three times a week he is really alert and ready to go. But most of the times it is slow going. Thanksgiving week he was doing well. In fact, he was up at 4:30 – 5:00 A.M. and I had to tell him to go to bed at 10:30 P.M. That was wild and I am sure fun for him because even Les took a nap that day.

This past week he has been napping again and today came home and
was in bed by 10:00 a.m. We discussed this chronic tiredness. Dr. Frangoul said he is getting all he can from the hydrocortisone. They may be able to up the synthroid. He said Joshua is getting about all he can from the medicines. Hopefully the blood work will tell us more.

Dr. Frangoul suggested we put Joshua on Ritalin., it is a stimulate, which I did not know. They would like him to take half of the lowest prescribed dose for adults, which is 5 mg. at 8:00 am and 5. mg. at 12.. They have done this on two other patients with good results.

Part of the problem also besides thyroid and adrenal glands not being in the best of shape is that three of his medicines for neuropathy are medicines that cause drowiness. It seems to me that all of Joshua's medicines play against one another.

Dr. Frangoul said they are not worried about leukemia any more but now we all have the aftermath to contend with. Having picked the choice of the transplant we now have to work with these problems and it may be for the rest of Joshua’s life.

The good news is we have Joshua, he is alive, Praise God! The bad news is unless God grants him an earthly healing this is where we are at. We will make the best of it with God’s grace. We will continue to pray for healing and work on helping Joshua live to the fullest in all areas of his life.

Our God is faithful,

Blessing and love this Christmas season,

Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Thursday, November 30, 2006 8:48 PM CST

Hi All,

Yesterday, I went to work leaving Joshua all by himself.

I know he is a 'big boy' but I get nervous leaving him alone when he is not feeling well.I woke him by phone, at 11:00 am. He was weak and dizzy. His endocrinologist wanted him to triple on the pills. Joshua had to go downstairs to get them. He was chilled by a fever and neeeded a blanket but felt too weak to carry one downstairs with him. Boy, did I want to be home!

He managed to get downstairs with a heating pad in tow. He found some little blankets downstairs and covered up with them all. I called back in a hour and asked how was his temperature. He replied calmly, "104" I said," Joshua, 104!?" He replied, " I will take it again." Then he told me it was 103. "Joshua, 103?" He said "Well, maybe I should take off the heating pad and blankets. I said, "Good idea, then check your temperature in one-half hour." I called him back and it was 102. Both of his nurses said to keep drinking water for the dizziness and to cool the body down.

The fever broke late afternoon. Les and Sam got home about 2:45 and stayed with him while I finished up work and went to church.

Today he is feeling well. Just a 24 hour bug. Glad it is over.

Blessing to you all,

God is faithful.

Love, Leslie

Wednesday, November 29, 2006 7:50 AM CST

Good morning,

Joshua had a rough night with breathing pain, lower back pain, and a fever over 100. He took an extra methadone and two Advil. That seem to help where he could sleep. This morning his temperature was down to 98.8, though his body still felt hot. His temperature is usually 97.6, he is sleeping now, hopefully he will feel better when he wakes up.

I will have to call the endocrinologist to see if he has to take more hydrocortisone to move this healing along.

We see Dr. Frangoul on Friday, good timing.

Thanks for your prayers,

God is faithful to complete what He has started.

Leslie

Friday, November 24, 2006 6:22 PM CST

Hi All,

I hope you all had a pleasant Thanksgiving Day.

This past week has been a mixed one for Joshua.
I was happy for him on Sunday because he drove me to church AND back which is a fory minute drive each way. I can not tell you the last time he drove all the way there and back.
He has only had a nap or two this week. The boys have been on break this week and Johsua has been sleeping till 9:00 -11:00 in the morning. I think that is one reason for the lack of naps. He has been able to drive Sam around and that has been fun for both of them.

Last week Joshua took home a friend who use to drive him around when he could not drive. Les and I thought that was cool.

Yesterday, Joshua wanted to take a nap and did not get to it. While we were all eating our yummy dinner. I looked over to Joshua and he was fast asleep, sitting upright on his chair. After we took a picture of the oddity, we woke him up and after we told him what happened, he had a sheepish look on his face. Then, in about ten minutes he went out again. We woke him up and he went to the couch and once again fell asleep sitting upright. I was hoping his neck would not get sore. He ended up going to bed.
Joshua and Les got up 4:30 this morning to catch some great deals at the stores. Joshua has not been to sleep yet. He even played a little 'toss the football' with Sam and his friend.

It has been an interesting week and I am sure we shall continue to see some great results from prayers and the new medicine.

God is faithful.

Love and thanks,
Leslie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Thursday, November 16, 2006 7:46 PM CST

Hi All,

We are continuing on the road to Joshua’s complete healing. We picked up Joshua’s prescription for hydrocortisone as you know. Combined, the tablets were 250 mg a day. Joshua was feeling sick, dizzy, and shaky inside all weekend. Sunday, at church, he was resting his head on my shoulder and sitting most of the time.

Monday, we had an eight o’clock appointment with the endocrinologist, Dr. Matthews. I showed him and the ‘fellow’ doctor Joshua’s prescription. They were immediately wide eyed and asked me about it. It turns out Joshua was to have 25mg. of this medicine, not 250mg! No wonder Joshua was feeling ill! I am just glad it was not a medicine that could kill. Thank-you Lord. Somewhere, somehow, the prescription was messed up from doctor to pharmacist.

It came up to Joshua taking 40 to 50 mg of prednisone daily. Prednisone is 4 to 5 times stronger than hydrocortisone.
Instead of Joshua taking twelve hydrocortisone pills, he now only takes two and one- half pills.

Because Joshua was still feeling tired, they believe his thyroid needs help as well. Joshua is now on synthroid. Hopefully, his thyroid and adrenal glands will respond to the medicines. The doctors said it would take a couple of week to see a difference. If the problem was just with the adrenal glands, it would only take a couple of days.

Now we are just waiting to see our new and improved Joshua.

Thanks for your prayers, as you can see we still need them.

Joy on this journey-

God’s love and ours,

Leslie

Tuesday, November 7, 2006 9:10 PM CST

Hi All,

Joshua had a good week except for the typical problems, tiredness and neuropathy.

I drove him again to his drafting class, and he also missed some regular school classes due to tiredness.

We went to see Dr. Frangoul on Friday. Joshua has maintained his weight at 142.7 and measured in at 6’ 1/8 inch. Joshua got eight tubes of blood drawn. I was told many of the tubes were for his endocrine workings. He also had a tube for IGG level; they are checking to see how strong his immune system is. If it is low, he gets IV of IVIG. Some of the other tubes were just regular blood work. They also gave Joshua a flu shot.

The culture for the blister, that they took last clinic visit came back negative, and he has not had any blisters since.

Joshua had a bone density test today. Last year the test took about 45 minutes, but this test took about 12 minutes. Vanderbilt has a new machine and Joshua was happy about that. He also received an echo-cardiogram. That took about ten minutes. The technician, Rebecca, put three electrodes on Joshua and started the ‘Echo’; we could hear his heartbeat. She said to us, “Perfect heart.” Thank-you Lord!

At the actually clinic visit, we first saw our pharmacist, Christine. She went over Joshua’s meds with us. Then we saw Cassie, our nurse.
Joshua fell asleep in the ten minutes we waited for Dr. Frangoul. Dr. Frangoul, Cassie, and I talked a bit before we woke up Joshua. I told them once again how Joshua sleeps and sleeps. He goes to school at 8:00 a.m. and comes home and is in bed by 10:00a.m. He can’t keep up with school, and 95 percent his life, he is walking around like the living dead.
Dr. Frangoul did not know it was that bad and said we will do the adrenal gland test. If those results are normal we will change the Lyrica medicine (neuropathy) back to neurotin. Joshua did not want to change the medicine because he would have to take it three times a day rather than two as for the Lyrcia. Three of his meds alone have a sleepy effect, and combining them is a very real reason why he is so tired.

Joshua got an I.V. and took the adrenal test. If I am remembering correctly, they gave him some I.V. cortisone and checked his levels every 20 minutes for a hour. Then the bloodwork is sent to the lab.

Dr. Frangoul called me up on Monday and told me Joshua’s adrenal glands are barely working, and his thyroid is slightly off. We had to pick up in pill form, hydrocortisone. He takes five pills in the morning, two and one-half in the afternoon, and five at night. I have not been told for how long he must take the medicine. This medicine is to jump start his adrenal glands and get them to work on their own.

I am so HAPPY to find out we are on our way to fixing this 'sleepy' problem. Joshua now can start to feel alive and be able to start doing and being rather than just existing and continually trying to push himself when he was so exhausted. He is suppose to start feeling better in a couple of days. Isn't that great!

After this problem gets fixed, we will then see a thyroid specialist.

We praise God we are continually seeing bits and pieces of light at the end of this journey. Joshua is on the path to living a normal, healthy life.

God Bless,
Continual joy and peace on this journey.

Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Monday, October 30, 2006 9:34 PM CST

Hi All,

Joshua made it to school every day this past week. I drove him to his computer drafting class. It is half of a hour drive there alone, just too much driving for him at this time.

On Friday, Joshua and Les went to watch Sam play football. Joshua and Les both got wind burn on the face. Joshua's face is still hurting because of it. Just putting on face lotion causes his face to sting.

Sam played two plays in the game and smacked knees with another player. He hurt the same knee. It is puffy and he is out for the season. Our coach has the injured football players now going to the Tennessean Titans doctors and their physical therapy rehab. center. Sam is excited about that and Les is happy to have these awesome doctors look at Sam's knee.

Joshua has his three year check-up this Friday.

God bless and thanks for traveling this journey with us.
God's love and ours,
Leslie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Monday, October 23, 2006 8:29 AM CDT

Hi All,

The day after the tragic car accident that I told you all about in the last journal, Les' brother, LeRoy called and told us that their sister Laura's mother-in-law and also Laura's 26 year old son, Danny, both died unexpectedly in a 24 hour span, between Friday and Saturday morning. What a tragic thing for her to bury them one day apart from each other. We left for Texas on Sunday, the 15th and returned on Thursday, the 19th. We know they both loved the Lord so that part is happy, but such deaths inevitably make for just plain difficult times. I know Laura and her husband Shaun would welcome your prayers as they move on with their lives.

Joshua continues to have a miserable time with the neuropathy. The present cold weather makes his joints ache. We put a space heater in his room. It feels about 80 in there but he is happy with it. This past Thursday he started to feel better. Joshua is in school today. I think he missed about three weeks of school. He seems to be over the cold/sinus problem so hopefully we can move forward.

GUESS WHAT-GUESS WHAT-GUESS WHAT!!!! Drum roll....
Joshua has completed algebra, which he has started four years ago. This is a 'Praise the Lord'.
He put his last assignment in a picture frame for me and gave it to me on Les' birthday celebration day.
This is one mom who is thrilled... Now on to Geometry.

We take His joy on this journey,
Love,
Leslie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Friday, October 13, 2006 9:47 PM CDT

Hello All,

This has been a slow week for Joshua. He continued to feel ill and exhausted. I could handle that, but when he told me his chest was tight and he could not take a deep breath I was concerned it was pneumonia. We went to clinic, he had lost two pounds and the breathing monitor said his breathing was at 97 which is good. It seems that he has a sinus infection so we are back on Levaquin, an antibiotic. We also found out Joshua has
eczema with a touch of GVH rash. The eczema is in the folds of his skin like inner elbows, behind ears and he also has patches on the upper chest. The GVH is on the hands where the skin is red then can lighten up to light pink. Our nurse Cassie noticed that happening during the course of the visit.

I told them about Joshua sleeping all the time and how he is so dragging when he is awake. They are checking his thyroid to see if it is working. They told me when kids get whole body radiation sometimes the thyroid stops working. The other thing they are checking is his adrenal glands. They are located above the kidneys. They are
responsible for producing a type of steroid that wakes up a person in the morning the effects of that steroid lessens by night and that is why one gets tired and goes to bed.
Joshua being on prednisone for years may have played havoc with his adrenal glands because they may have said, “Well, since Joshua’s body is receiving steroids we can take a vacation.” We will find out on Joshua’s next clinic visit when he will have the adrenal gland test. If they are not working they give him a pill to jump start the glands. I hope it is one of these things so we can get this sleep problem fixed and he can move on in life and all it holds for him.
He had head pain and stomach pain along with feeling of dizziness this week. Tonight he is feeling better. Since Joshua has been feeling ill he had to miss the school’s, “The Uttermost” bike ride. There is always next year.
Tomorrow is a new day. Please pray with me that Joshua is on the upswing.

Also please pray for one of Les and Rebecca’s co-workers at Dave Ramsey’s named Brad. His wife and 4 yr. old child were killed in a car wreck late this afternoon. He also has a little baby (2 or 3 months old) who is the only one who survived. Please pray for Brad because I can barely even imagine the hurt and pain he must be going through right now. It just hits home the point even more that no one is promised tomorrow.

Do you know what would happen to you if you died tonight or tomorrow? Please get yourself right with God...there's no time to waste. Feel free to talk to any of us if you have questions about Jesus. We love you all.

His joy on this journey,
Leslie, Les, Rebecca, Sam, and Joshua our Champion Warrior

Saturday, October 7, 2006 10:41 PM CDT

CONGRATULATIONS JOSHUA, OUR CHAMPION WARRIOR,
ON HAVING THREE YEARS OF GRACE AND RECOVERY THROUGH THE BONE MARROW TRANSPLANT.

WE BLESS THE LORD FOR HIS GREAT AND MARVELOUS WORKS HE HAS DONE THROUGH JOSHUA.

WE ARE SO HAPPY TO HAVE YOU JOSHUA.

(TODAY IS THE THIRD ANNIVERSARY OF THE BONE MARROW TRANSPLANT)

LOVE, MOM, DAD, REBECCA, AND SAM

Tuesday, October 3, 2006 5:34 PM CDT

Hi All,

Joshua is doing some better. He stayed home from afternoon school to take a nap. We talked to nurse Cassie, Joshua told her he also feels sick, stuffy nose etc. He thinks he has a virus or a start of an early cold. We all remembered when Joshua gets sick the neuropathy acts up and gets worse. He is taking in the afternoon 400mg of ibuprofen. Hopefully that will get him over this bump in the road.

Thanks for checking in and your prayers,
Continuing in His joy on the journey,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champiom Warrior

Tuesday, October 3, 2006 8:23 AM CDT

Hi All,

Joshua is in need of some prayer. He came in my bed room sat down and said he was in lots of pain and then the tears fell. He had had a bad night having woke up 4 or 5 times in major neuropathy pain and a head ache all night long.

He said he had incredible pain everywhere on his body that has neuropathy which includes legs, arms, neck, and back.

Joshua said his bones in his chest hurt so intensely that he had to put his arm on his chest to try to stop the pain. He also had feelings of stiffness or frozenness through his whole body which made it hard to sit or stand up and even hold on to his cereal spoon.

He has two blisters on his arms added to the one he had on his leg last week. I think it has to do with a low immune system. My sister-in-law said some of her nursing home patients had them and the doctors weren't sure what they were. Some of the doctors treated them like a virus.

As I sit and type I am having a good cry. I think he is over with these bad days and then the intense pain slaps Joshua in the face again. It hurts to see him hurt so and I wonder," How long Lord."

All I can do is to keep praying for relief for Joshua and keep believing the Bible verse, by His stripes Joshua is healed.

I also read in my herb book that primrose help ease the pain of diabetic-peripheral neuropathy. I am going to see if it can help my Joshua. I am getting some today.

I drove the boys to school since Joshua could not drive. I am proud of him that he wanted to go - that is why he is my Champion Warrior.

I will post later if something arises.

Always in His joy even though it is hard,
Love, Leslie

Sunday, October 1, 2006 9:52 PM CDT

Hi All,

It was a good yet tiring week for Joshua.

Even one of his teachers commented to me on how exhausted Joshua had looked.
He had naps everyday for some reason. Sometimes, I think he almost gets his nights and days mixed up.

We called Dr. Frangoul to see if Joshua could go golfing (sun). It was fine as long as he put on sunscreen every hour. He did but he still got sunburned. Les, Joshua and Les'dad had gone out from 4:30 to 6:00 p.m.
Joshua had a wide-brimmed hat on and somehow still got burned underneath. Joshua skin flakes SO badly when the 'burn' happens. I think the sun expossure and the drier weather we are having plays havoc with Joshua's skin.

Their second day of golf had such a thick cloud coverage and on/ off rain that he did fine.

Our church had its second annual car show to raise money for the Ronald MacDonald home. Joshua was the guest speaker and was able to tell the people what the home had meant to our family during our four month stay.

We are enjoy the cooler fall weather.
As always, thanks for checking in.
His joy on this journey,
Love,
Leslie, Les, Rebecca, Sam and Joshua our Champion Warrior

Thursday, September 21, 2006 8:43 PM CDT

Hi All,

Yes, Joshua's nosebleeds are due to drier weather. I asked to see his counts on his bloodwork. All looked good to me. Thank-you Lord. I wonder when a parent stops thinking of relapse?

Joshua has been in more body pain and is now taking an extra 400mg of ibuprofen every other day. He said sometimes his body feels so stiff.
Dr. Frangoul was extremely cheerful and after the check-up he and nurse Cassie just visited with Joshua and me. I know he is SO happy that Joshua is doing SO well. If you remember, he had given Joshua a 20 percent chance of coming through this transplant. I know he loved being proved wrong in this instance. During our clinic visit they talked about football, Joshua's love of legos, and of Joshua's wanting to do 'The Utmost' (for his school) three days of 40 miles of biking in a Nashville Park,(pretty flat surface).

Joshua now is off of the magnesium pills and prednisone. He is now down to six different medications, not counting Advil.

He can't volunteer at the hospital since he doesn't have any of his shots. They are especially concerned about him getting chicken pox. Also his T-cells are not normal yet. It looks like December is when he can start getting his shots.

At our next doctor visit in October, Joshua gets all of his yearly checkups which include an echo (heart), bone density test, lung test, eye exam and teeth exam (x-ray). I am not sure there are any more. The reason why they do all this testing is because of all the chemo and the full body radiation including head he went through. There is not to much chance of AML leukemia coming back, but, getting other cancers and problems arise now. In fact, he is to have these testings annually till he is 65!

We know God has before us and is with us and we are thankful for that.

Sam is doing well and since this past Monday is back at playing football. His doctor visit went well. Dr. Arthur said all looks fine, just wear your knee brace through this season.

Les's older sister Linda and his dad are visiting for two weeks. Hopefully they can enjoy watching Sam play some football.

I am thankful for good doctor visits. Continuing in HIS joy on this journey.
Blessings and love,
Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Hero

Monday, September 18, 2006 1:40 PM CDT

Hi All,

Joshua is missing his hospital family and is looking forward to the clinic visit. He has had three nose bleeds in 24 hours. Les and I both had some thoughts (leukemia) then pushed them aside. His color looks good and he hasn't any bruising so it most likely is due to the dryer weather.
I read a good devotional about whatever happens to you God has already been there and will see you through. I like that thought. God is good.

Joy on this journey,
God's love and our's
Leslie

Saturday, September 16, 2006 5:48 PM CDT

Hi All,

Joshua had a sleepy start to this week, He even stayed home on Tuesday from school to catch up on sleep. He seems to be doing o.k now.

Joshua is hoping to do some volunteer work at Vanderbilt for a school class. We have to see if he needs all his shots before he starts. We hopefully will find out this Friday at clinic.

We aren't getting Sam's knee brace till Monday. He is going to start football practice this week. His quad muscle is sore and has a pinch of pain so we will see how much practice he is up to.

Tonight, Joshua is going downtown Nashville for a classmate's birthday party. The party might run late. Joshua, having never been out at night alone in Nashville will not be use to the homeless who may accost him as as he leaves the restaurant. Because of this, Les and Sam will be going also, they will just be at a different part of the restaurant.

All is well at the Nienow home, I pray the same for you.

Joy on this journey,

God's love and ours,
Leslie

Saturday, September 9, 2006 10:08 PM CDT

Hi All,

We did not have to go to clinic on Friday. We were told to watch the sore, if it got worse we were to go to Vanderbilt Emergency. Thankfully it started to get better.
Joshua started another blister on his arm. It broke by itself so now we can watch that one also. If he gets another blister I will call our doctor.

Since Wednesday afternoon Sam has been brace free. Monday, we go to get a foam brace which he needs to wear when he is active. He is happy not to have to lug that thigh to calf metal brace around.

Friday, I got a suprise. Before the football game they called out each player's name as they ran out individually. I heard them call out, "Number 50, Sam Nienow, there jogged out my Sam, I just stared, that was the best part of the game for me. He can't practice for another two weeks though. Incidentally they whupped the other team 50 -0.

Joshua is sure a lot of help with his driving, I have been able to get some painting done in this new house of ours.

The nausea and stomach problems have left. We are thankful to the Lord for that.

Clinic on Friday the 22nd, hopefully get to drop more pills, Yea!

God bless and love,
Joy on this journey,
Leslie

Tuesday, September 5, 2006 9:33 PM CDT

Hello All,

Joshua continues to show Sam a good time. Friday, he and Sam went to see the Pirates of the Caribbean, then they finished off their night with a trip to Sonic.

Joshua is doing his best to stay out of the sun, it has been two weeks since the sunburn and he still continues to flake off on the arms.

In the last couple of days Joshua has had some stomach cramps and some nausea. We continue to pray that it is a seldom thing.

We might have to go to clinic on Friday. Joshua had a blister the size of a dime which he popped (with an alcohol soaked needle) and it is not healing as quickly as we think it should. (it has been a week) The site also has tiny blisters encircling the sore area.

We are doing well as you can see as we continue down or rather up this road to complete recovery. God has blessed us so and I am grateful to Him.

Joy on this journey,
God's blessing and love,
Leslie

Tuesday, August 29, 2006 9:04 PM CDT

Hi All,

Monday was a Red Letter Day for Joshua. He was able to have the desire of his brotherly heart and drive Sam to school. I took a picture of the two of them driving off.

Today, as Joshua was walking out the back door, I told him good-by and he turned around with a glowing smile and keys in hand . This driving has made him so happy. He loves getting in the car and driving himself without waiting for Mama to drive him home. We are so HAPPY for him.

School is wearing on him, one thing for Joshua, he still needs lots of sleep. I found out that people with neuropathy need more sleep than the average person, Joshua certainly fits that description.

I am doing his pill organization now. One less thing for him to think of now that school has started. He is down to taking pills once in the morning and once at night. He is still on nine medications besides the nutritional supplements. He likes taking pills only twice a day, he feels he has FREEDOM in this area now. In the early days it was seven times then more recently it was six times a day, and now two. Everything is coming together and it is exciting!

Joy in this journey,

God's blessings and love,

Leslie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Saturday, August 26, 2006 12:37 AM CDT

Yesterday was a GLORIOUS DAY!!! JOSHUA DROVE HIS DAD TO 31 FLAVORS. Les told me, Joshua was a little nervous while driving (understandable to me) and at times somewhat jerky in his driving but other than that he did quite well. Les reported Joshua is still a conscientious driver.

This is a Praise the Lord day for ALL the good things He has done.

Joy in this journey,
Blessing and love,

Leslie, Les, Rebecca, Sam,and Joshua,Our Champion Warrior

P.S. It was August 27, 05 when Joshua stopped driving, almost a year.

Wednesday, August 23, 2006 8:31 PM CDT

HI All,,

Well, was not Tuesday a GLORIOUS day? Joshua is off cyclosporine. The day that took its time coming is here. These next months journals will be a lot of fun to write because I will be telling you what medicine Joshua is dropping month by month.

Off cyclosporine

Drop magnesium to three pills a day
(at transplant it was 18 a day)

Off Nexium (stomach medicine)

Off amoxicillin

Joshua is now 145 lbs. Yea!!!!!

Joshua did get 'talked to' about being out in the sun. His arms, hands and neck were sunburned. Dr. Frangoul said Joshua must be done being in the sun. Since he is at a higher rate of incidences for melanoma cancer. He MUST be careful.

They believe the itching was sun related but just in case it was GVH of the skin they gave us a prescription for prograff, a creme to put on the skin. Joshua needs to use that one day and Triaminolone, an anti itch creme to switch off the following day.

We found out he can still get GVH, so we pray that he will not and he is done with the cyclosporine medicine for good.

We are still waiting for our insurance company to give the go ahead for Joshua to drive.

Sam continues to do well at therapy. When he rides the bike he calls me over to tell me he has burned 11 calories. WOW.

He saw the doctor on Monday. There was still quite a lot of fluid on the knee. The doctor decided to give the knee a shot and then use a thicker type needle with syringe to remove the extra fluid. Sam was not thrilled when the needle touched the kneecap. (I just prayed because I could not really look. (When I peeked it was ucky.) He removed 60cc of fluid/blood from the knee. Normally there is 5 -10 cc of synovial fluid and usually without blood. (before this procedure was started and he and I were the only ones in the room he asked me, " Do you think this is a natural way of removing the fluid." (He was not real sure about getting this done to his kneee.)

They were very suprised how Sam handled it. The nurse told me that she had grown muscled men pass out with the procedure. Here Sam was watching the procedure. He did squeeze my hand and said it HURT but he survived it.

The doctor believes he has another month to go at the earliest for being in a football game.

Going strong on the Nienow Front.
Joy on this journey
God bless and Love.
Leslie,Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Sunday, August 20, 2006 4:07 PM CDT

Hi All,

We are back from camp safe and sound. Both boys had a good time. Guess what, this year Joshua did not use a cane at all. Two years ago at camp he drove or was driven from activity to activity. Last year he used his cane and THIS YEAR JUST HIS WORKING LEGS! Is not that a show of the handiwork of God? It is taking time to get stronger but he is.

As for me, camp kitchen duty was not so much work because there were many women to share the load this year. Everyday I had a couple of hours of free time.

Joshua's itchy red patches are no longer red, just itchy. So, we will get this checked out this Tuesday at clinic.
He was hurting this morning at church hopefully it won't turn out to be chronic and the medicine regime will work for him. Please continue to pray for the neuropathy to be gone in Jesus' name.
We are just waiting to hear form the insurance company to tell us when Joshua can drive.

Joshua had a enjoyable birthday. He received items from legos to a book to a pair of WWII pants to go with my father's war officer jacket. In the morning the family trooped into Joshua's room. I went in dressed in a silly gold outfit and a large gold star in my hand proclaiming I was the golden birthday fairy and I had come to wish him a happy golden birthday. Later on Sam got into the silly mode and used the large cardboard star as a masked complete with cut out eyes and was my helper. Fun ...

We had a dinner Saturday night honoring the senior citizens at our church. We went to help serve them. Joshua went dressed in my dad's yellow gold leisure suit and silky dress shirt from the 1970's. Why, you ask, no other reason but to celebrate his golden birthday. The older folk enjoyed seeing an outfit from the past on Joshua.

Tuesday is clinic, will let you know how it goes.

God bless and continuing in His joy on this journey,
His love and ours,
Leslie

Monday, August 14, 2006 6:52 PM CDT

Hi All,

We started Joshua on the one-half methadone last week Monday. By Saturday he was hurting badly. He had some relief on Sunday and was in 100 percent total pain on Monday along with feeling dizzy when he woke up. He took a quarter of a methadone in the morning along with the 800mg of ibuprofen That enabled him to get out of bed and get packing for camp.

I called the clinic and talked to nurse Cassie about the situation. She relayed it to Dr. Frangoul and suprise of all suprise he was o.k. with the whole methadone at night as long as it was taken no later than 8:00 p.m.
Joshua's body should be o.k. with this regime of ibuprofen in the morning and meth at night.
Tomorrow I send in the release letter to the insurance company.:) :) :)

Joshua does have a strange itchy rash. It is scattered on his upper chest and upper back and he has silver dollar size splotches on the fold of his elbow and on his neck.
Nurse Cassie ordered us some anti-itch cortizone creme. If it gets worse we will have to leave camp to see them. We are thinking it is a heat rash and not GVH.

Other than all this Joshua is fine:)

Sam is doing well also. He is scheduled for physical therapy three times a week not the two as we previously thought. The doctor said he has a medial patella femoral ligament tear. (Say that three times) It is the ligament that keeps the kneecap from sliding side to side. Therapy works to get his quad back in shape. Besides leg lifts he gets to have electrical shocks to get the muscle of the quad remembering what to do. Sam also had his leg wrapped in icy electical packs to help bring down the swelling. There is still lots of water on his knee. We will know more at the next doctor visit this coming Monday.

The boys and I are off to school camp. I am going as one of the mothers who cook for the kids. It is my third year of cooking, it is work but also fun.

Joy on this journey,

blessings and love,

Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warior

Monday, August 7, 2006 10:27 PM CDT

Hi All,

Sam had the MRI this past Friday. We were given the results today. Great news all the way around, thank-you Lord.
There are no tears in the ACL, (a ligament around the kneecap.) Which is great Praise the Lord news, for that is what they thought Sam had. Sam would have required surgery for the ACL damage or chipped and loose cartilage. Because there was neither of these two, 4 to 6 weeks of rehabilitation is all that's needed.

The MRI showed LOTS of fluid between the dislocated kneecap and the leg bones. He needs to stay in his leg brace for least two weeks. The doctor said Sam has already lost strength in his quad and will need four to six weeks of therapy for the quad muscle along with building up the knee. The earliest he will be back to football is the middle of September. I am very glad he will be able to go back, since he loves it so.

I thought to myself, "If Sam needs therapy to build up his left leg for not using it for a week no wonder Joshua's legs are taking forever to build up after being in the hospital bed for almost 200 days in one year.

Joshua and I were talking about how much methadone he was taking, Joshua said he was taking a whole pill at night I said he was to take only one-half pill at night. He was sure and I was sure so I had to call Vandy. Our nurse Becky called us back and told us it was one-half pill at night. SO...Joshua starts the new dose tonight, pray that it works. I do not think Dr. Frangoul will accept the whole pill at night for day driving. The driving is on halt for another couple weeks to see how he does. We're almost to the finish line, with this driving matter:)

Have a great night.
Joy on this journey,
God bless and love,
Leslie

Thursday, August 3, 2006 10:10 PM CDT

Hi All,

Joshua is sailing along here on the new pain regime. It is a wonder it was not thought of before by any of us. We all kind of hit on it together and Dr. Frangoul said ok to it.

Joshua has even mowed our grass AND the neighbor’s grass. They are only a quarter of an acre each but together they are a half of an acre. ( Can you tell I am great at math?) Joshua felt good after the mowing and even bounded up the stairs. It is fun to watch him with so much energy.

He still has leg pain and some stiffness in the legs but nothing he can’t tolerate. We are waiting for the release form from the doctor to send to the insurance company and then he will start driving. It will have been eleven months since he has driven anywhere. Joshua will be driving me around for a while till he feels comfortable behind the wheel.

Last night the ‘tables turned’ at our home. Yesterday during football practice, Sam was tackling someone, Sam fell and the boy’s cleat fell on Sam’s knee and somehow Sam’s kneecap popped out and popped back in place. Long story short, Sam has a MRI tomorrow. He will be wearing a knee brace and taking therapy two times a week. He will be out of football at least a month. He loves football and is good at it so we are all disappointed for him. He has been icing it and has crutches nearby when needed. Anyway, he is lying on the couch and Joshua is his errand boy. Isn’t that something! Joshua is enjoying it and by the way so is Sam.

If you could pray that they do not find any bone chips ‘floating around’ when taking the MRI this coming Monday we would appreciated it.

Joshua is about seven lessons from getting his algebra FINISHED.

All is well and I pray the same for all of you.
God bless and love,
Joy on this journey
Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Thursday, July 27, 2006 8:37 PM CDT

Hi All,

Guess What - Guess What - Guess What!

Dr. Frangoul has worked out a plan for Joshua, if it works Joshua will be driving in two weeks. Isn't that a praise the Lord! He is taking 800 mg ibuprofen in the morning and one-half methadone at night. Dr. Frangoul said the methadone taken at night will have worn off by the morning.

Joshua so far has gone two days on this program. Please join us in prayer that his body can handle this. My only
problem with this high dose of ibuprofen is that it can cause liver damage. Joshua already has shown occasional problems with his liver 'numbers'.

I really wanted Joshua to be driving before Sam gets his permit in December, when he turns 15. Joshua really wanted to drive Sam to school and have brother time going places together without their mama always driving them. I pray this works for Joshua.

More good news - Joshua is now 143.5. Dr. Frangoul asked Joshua if he had rocks in his pockets. Both he and nurse Cassis were very pleased with Joshua and how he looked. They said by looking at him one would never know that he had had cancer.

Joshua is now down to 25mg of cyclosporine. After that the medicines come tumbling down. Since Joshua has a new immune system he will have to have all his shots again, like a new born baby.

We were told we need to find a doctor for Joshua when he is off his medicines for then they will only see him if he has transplant problems. They won't see him for earaches and sore throats etc. My eyes just popped way open and I said, "What do you mean you won't be seeing Joshua". I felt like we were being abandoned. By the time Joshua is off everything it will be almost four years of going to Vanderbilt. I think we will have twice a year check-ups. I understand it is time to move on over and let them help those who are in the midst of treatment. It just has been a very intense almost four years and it will be strange to bring Joshua to another doctor. I mean, what will this doctor know about Joshua?

Thanks for letting me ramble on, you all have been a blessing to us, just knowing you check up on him blesses me.

Thank-you God for carrying us on this journey.
Love and blessing to you all,

Leslie

Saturday, July 22, 2006 5:23 PM CDT

Hi All,

Thank-you for your prayers, Joshua is feeling MUCH better. He was able to finish up on his drafting test. He also is hungry, another good sign that he is back to normal.

Will write next week after the clinic visit.

Joy on this journey.

God bless and love,

Leslie

Friday, July 21, 2006 3:45 PM CDT

Hi All,

WE HAVE AIR CONDITIONING!!! We are enjoying it.

Joshua, is home and glad of it. He is a weary a traveler for he has been on the go since June 7th.,with only a couple of days in between at home.

Joshua said he felt sick when he got to the retreat and still feels icky today. We are believing it is a 'bug' because the symptoms are similar to GVH. Nausea, dizziness, and not being hungry and the like is what he is feeling today. Thank-you for joining us in prayer that he will be up and ready to go in no time.

We have a clinic appointment on Tuesday. Hopefully he will be able to lower on the cyclosporine:)

We are continuing in His joy on this journey,

God bless and love,

Leslie

Wednesday, July 19, 2006 5:44 PM CDT

Dear Ones,

The boys arrives safely home on Saturday. They had a great time at my parents but were glad to be back in their home. I was looking at Joshua at church on Sunday, talking to his good friend, Sam. Joshua looked SO GOOD. I told him so. If you didn't know it, and you looked at Joshua you would not think that he went through cancer. Praise God !!

Our air conditioning went out last Friday.
Thankfully, Les and I have a wall unit in our bedroom so the family has piled into our room each night to get a decent night sleep, giving new meaning to the family bed. The air men didn't maked it today to our home so hopefully tomorrow they will.
To think years ago people did this all the time and cooked too. We have eaten out or eaten cool and light at home.

Joshua is is at Fall Creek Falls on his Jr./ Sr. Retreat for school.This is where the classes go away for a couple of days and pray for the school and vote for class officers. Joshua was chosen by his teachers and principal to be the class chaplain. Joshua would be at all the meetings of the class officers for opening prayers and be allowed to add any ideas of his own for this school.
Once a week he may offer a small bible/prayer time for the classes. I am proud of the postion for him.

I know Joshua would like prayer for his legs. This year he is hoping to make the trip and the steep walking trail they do each year by himself, with no help from anybody.

Joy on this journey,
God bless and love,
Leslie,Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Wednesday, July 12, 2006 7:52 PM CDT

Hi All,

To quote Joshua when I asked how he was doing at my parents he said, " I am having a blast." He loves to play, from Legos to chess with his papa. They all play the card game, 31 at night after supper. Sam and he are enjoying swimming in my parents inground pool and biking.

Here is a 'cute' story,( Nurse Adele, I know you will 'hoot and holler' over this one.) Joshua called me up to tell me how he was doing. He then proceeded to tell me where he put his belongings after he unpacked them. He told me what went in each drawer and how he still left some drawers for Sam. I was thinking to myself, who calls anyone to tell them the placement of their belongings? Only Joshua, I thought with a smile. Anyone who knows Joshua knows he is methodical and precise in his placements of his personal items.

At night, Joshua, is hurting from the extra physical activity. He started to take a whole methadone at night and half of one in the morning but he found he was getting dizzy and his eyes were hurting. ( that was up a half of a pill) I called his nurses and they said to change to half a pill three times a day like the pain doctor prescribed. Joshua feels better now. By taking the extra methadone he will be out of methadone by Friday night, we won't see him till Saturday afternoon. I told him I will bring a methadone with me then. We pray for a safe flight for them.

All is fine on the Nienow front. I pray all is well for you all too.
Joy on this journey.
God's love and blessings,

Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Wednesday, July 5, 2006 2:50 PM CDT

Hi All,

Our flight arrived safely and 20 minutes early to boot last Wednesday. Les picked us up and we were home around 10:00 p.m. Rebecca arrived home shortly after and shouted, "We're a family!" as she walked in. We had not been together for a week. That comment is a family saying, that someone will always say when we are together after being apart for a while.

We had clinic appointment on June 30th. Joshua weighed in at 139lbs and Sam at 165lbs. There is about two inches difference between them.
Dr Frangoul was happy with Joshua on all accounts except he noticed quite a few more freckles on Joshua's face. Joshua does slather the sunscreen on, 45 or 50spf, yet some sun still gets through.

Joshua was able to reduce the cyclosporine another 25mg. down to just 50 mg daily. He should be completely off that medicine the end of September, God willing. After that he gets off the prednisone and all the rest are stopped. Except for the neuropathy he should be off all the medicines by Christmas. What a WONDERFUL gift for Joshua. (and the rest of us)

Joshua's skin is paper thin now and will tear at the slightest provacation. It is just like elderly skin. We were told his skin will get better when he gets off prednisone. Good news to me.

July 1st. Sam and Joshua left for West Palm Beach Florida. They are staying at my brother Kim's house.
My parents met up with them there. They all enjoyed the beach. My brother had a sun unbrella. The boys lotioned up and had hats. Joshua still got some sunburned, on his forehead. He was afraid to use suntan lotion on his forehead for fear it would drip in his eyes and he would have an episode like the last one of the stinging eye. I told him next time use one of Kim's headhead band of Kim's to stop the sweat by the eyes.

Today I talked to Joshua and he said he was feeling GREAT! I am so happy for him and I know you all are too.

Thursday they leave with my parents for their lovely home in Homosassa, about four hours north of West Palm Beach. They will be going to my parents church and it will be a celebration . Most of these people have known Joshua since he was three. They have not seen him since he was diganosed in Dec. 2002. I know they will be happy to see their prayers answered.
All the glory goes to God.

The boys will be home on July 15th.

Joy on this journey,
Love,
Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Tuesday, June 27, 2006 9:00 AM CDT

Hi All,

We are still in sunny Texas. Today we fly out of Austin to home.

It was great to see my family at our family reunion. I especially enjoyed the campfire nights and tubing down the river. We did not get to kayak as the river was too low.
Joshua and Sam enjoyed learning Texas Hold'um, a poker game. At night they would play with my older brothers and their cousin Bobby.

The first couple of days of activity had Joshua a little sore. He took an extra methadone one night in hopes of cutting the pain but it was to no avail. There was only one other time when he was really hurting all over other than that he did quite well.
He had a couple of things happen on this leg of the vacation. The first night he forgot where he took off his glasses and did not find them till the morning we were leaving. They had fallen off the bed and part of them were lodge under the metal bed frame with only one temple sticking out. That was an answered prayer for we had prayed and prayed to find those glasses. Joshua needs them on all the time now.

The other thing was he had gotton suntan lotion in one eye. He was walking to his cabin and was unable to get in because the door was locked.
My Uncle Jim in the meantime called Joshua over by him to rinse out the stinging eye. Then, after a minute my brother, Kim, opened the door and called Joshua back. As Joshua was walking back to his cabin covering the stinging eye with his hand which by now was stinging more than ever, all of a sudden he screams in major pain. No one knew for a second what was going on but did see that his other hand was on the top of his head. Joshua admidst his crying yelled he was stung in the head by a wasp. Uncle Jimmy removed the stinger and we loaded the area of his head up with meat tenderizer to stop the stinging. So, it was a mess for a while as we were trying to get his eye rinsed out
and lessen the pain of the bee sting.
As things settled down, we were able to laugh about it. Joshua said when he got stung he did not feel any eye pain at that time. I guess one pain out hurts the other. The other thing was at the campfire that night Sam gave a mime on what happened to Joshua and even had Joshua laughing. We all know laughter is the best medicine.

Our fourth leg of the vacation was a visit to our Uncle Jim and Aunt Diana's 125 acre ranch, not 350 as I previously told you. The boys and I truly enjoyed ourselves. We went horseback riding through the forest trails, up hills, down stoney paths through a mucky creek. We loved it, but it was scary sometimes. The boys worked on lassoing and cleaned the horse stalls. Joshua also went fishing for the first time. Uncle Jim said if you catch a fish you have to take it off the hook. Which they did and I am proud to say so did I.
Aunt Diana took me antique shopping in Fort Worth and we had a great time being together.

Yesterday we took a Greyhound bus to Austin where we are on our final leg of the journey, Les' brother LeRoy's home. Here we had a night of card playing, pool splashing, some video games and hang out time. Tonight we will see Les and Rebecca. Home Sweet Home, here we come!

Blessing to all,
Enjoying the journey,
Leslie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Wednesday, June 14, 2006 7:18 PM CDT

Hi All,

I am at one of Les' sister's home and she has a computer so here is an update.

Joshua is doing great. Thank-you for your prayers! Monday, he basically stayed in the house, it was SO hot. Tuesday,Uncle Leroy,(Les' bro) and his nine year old son, John Luke took Sam and Joshua to the pool, for about one and one-half hour.

We played some cards and watched the movie, National Treasure, just some good hang out time.

Today we doused ourselves with suntan lotion and went to a spring fed swimmming 'hole'. It looks cave-like one one side complete with swallows and their tiny nests plastered on the ceiling of the 'cave'. The water was so cold at first. We even sat on a lichen covered rock as a mini waterfall showered us. The water came down a little hard but I thought it felt good. Joshua thought it was too cold.

We walked .6 miles to a beachy area. That was a trip. Joshua got four opened blisters. Believe it or not he and I changed shoes in hopes that his feet would not be rubbed in the same spots. I even gave him leaves to put on the opened blisters for a natural band-aid. In the end I went to find Sam and get his shoes for Joshua. After that Joshua was fine. We walked back when we were done with the beach, up and down hills, over rocks and roots and Joshua did well. Each year he gets better and better. Thank-you Lord.

Tomorrow we are off the my family reunion, the third legg of the vacation.

Praise God Joshua is doing fine on all accounts!

God's joy on this journey,

God's love and blessings
Leslie

Sunday, June 11, 2006 1:32 PM CDT

Hi All,

Our vacation is relaxing and full of new doings.

We went sailing on Friday for six hours. beautiful weather for sailing with a slight breeze. We got up to about five knots which is about
seven miles an hour. As we sailed out in the Gulf, we saw jellyfish. We learned the differences between two particular jellyfish, stay away from the ones with the long tentacles. We also enjoyed the dolphins following the sailboat. Later on Friday night the 'boys' with their Uncle John slept out in the boat. The boat was in the harbor in its slip( where it is tied up)for the night but they enjoyed it anyway.

Off on the second leg of the trip, Les' dad home.
Joshua not having any naps slept about two hours after church- and that was 10:30 a.m. in the morning.

Joshua does not feel dizzy any more and blood pressure is fine. He does need prayer for weakness and secondary neuropathy problems.

Right now we are enjoying the afternoon at Les's sister's ,Laura, home. The guys are watching golf.
Maybe, they will try to golf themselves.The temperature soars to 100 degrees quickly here. Joshua not being able to take heat or lots of sun, we shall see if they are able to golf.

This is turning out to be a two nap day for Joshua. As I add to this journal now at 5:00 p.m.. Joshua went back for another nap at 4:00 this afternoon. The last couple of nights were late ones and no nap yesterday did him in.

Thursday we are off to Burne for my family reunion. Campfires, kayaking and tubing down the river are in order. Then the following Tuesday we are off to my Uncle Jim and Aunt Diana's 350 acre ranch in Dallas. Here the boys can ride horses and four wheelers. We may even try our hand at fishing.

I am not sure when I will see a computer next so I may not be writing for a while. Enjoy your summer.

His joy - together we journey.

God bless you all,
Love,
Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Thursday, June 8, 2006 9:47 AM CDT

Hi All,

This past week Joshua was feeling weak and dizzy. We checked his blood pressure at noon it was 114/70 (normal for Joshua). At 6:00 a little lower and by 9:00 p.m. it was 95/54 at his lowest. We called the doctor and she said to drink 8 ounces of water and check the blood pressure with in the hour and call us if the lower number is under 55. I had Joshua drink 16 ounces of water and when we took his blood pressure it was back to 107/66. That saved us a trip to emergency room for fluids.

The next morning, Tuesday, Joshua was still weak and dizzy I called the doctor and we wented over. I was hoping this was not something major since we were leaving for Texas on Wednesday. They gave him some blood pressure tests.
A nurse took his blood pressure lying down, then sitting up and then standing up. This was all done right after another to see if there was a large difference in the pressure. "All was normal," they said.

They decided to give him fluids to make sure he was hydrated to start the trip. It took six 'pricks' to get the I.V. in. One time one of his veins blew. Other times they could not get any blood to come up. Anyway it was a mess and by the time they were finished he came back in the room with tears in his eyes. Joshua noted later that he got six needles on 6-6-06. We had to wait for almost three hours for the fluid to get in by this time Joshua was lying down covered with a blanket sleeping away.

They talked once again to the pain doctor, (they talked to him yesterday to try to figure out this dizzy problem)
He told them to drop the middle dose of Lyrica. Too much Lyrcia can cause a host of problems like being dizzy, lighrheadedness and forgetfulness.

Joshua and I were able to go home after about four hours at the clinic.

Today Thurday, we are in Rockport, Texas hanging out with Les' sister Donna and family. We have walked in the Gulf of Mexico - only for a second though for it was filled with hundreds of small, whitish jellyfish. No thanks on being stunged. The boys stayed up till 11:00p.m. playing Pokeno, a type of Bingo using cards though.
Joshua is not feeling dizzy anymore.
He continues to feel weak. He wants to feel good especially for my side's family reunion. We would love prayer that Joshua would not feel so tired.
Pray for strength for him physical and emotional.

God bless you all,
In His love on this journey,

Leslie

Thursday, June 8, 2006 9:47 AM CDT

Wednesday, May 31, 2006 7:35 AM CDT

Hi All,

Busy week for me. Between working at Dillards and doing hair at a Columbia nursing home I worked 54 hours! One more week at Dillards and I am done there. June 7th Joshua, Sam and I fly to Rockport, Texas, (Les' sisters live there) where we start a three week vacation. I am looking forward to that. From Rockport we go to the Austin area, to see Les' dad. Then to San Antonio for my side family reunion. (We meet up with Les and Rebecca) After that, the boys and I go to Dallas with my mom's brother, Jim and wife Diana to their ranch and ride horses. We will have a great vacation.

Yesterday was doctor day for Joshua. We started out at the dermatologist, Dr. Mike who sprayed the warts on Joshua's fingers. Joshua sat there so stoic that I asked him if it hurt. Dr. Mike said, "Yes, it does." Then he proceeded to tell us that hopefully they will turn in to blood blisters for then we know we did a good job at getting at the root of the virus. Until Joshua gets off the cyclosporine and prednisone it is a tough time getting rid of warts. Joshua's having a poor immume system is part of the problem with getting the virus. Later on Joshua told me that it really hurt. By the middle of the day he was having a hard time opening store doors and holding a pencil.

Next we are off to see Dr. Frangoul. Joshua weighed in at 138.4 lb. I am hoping he will be 140 lbs. on our next visit. Another praise the Lord is Joshua was able to lower another 25mg of cyclosporine. At this rate he should be off it in September. Isn't that just something to shout about? After that we start to drop more medicines.

Joshua's platelets are 125, low average starts at 135.
They do bounce around so. All his counts are good for him. I wonder when they start looking normal?

We are doing the methadone 2.5 three times a day. Joshua was taking 2.5 in the morning an 5. mg at night and not seeing a difference in the pain. hopefully the spread out dose will help. (Which is what Dr. Hayes at the pain clinic wanted him to do in the first place.) Joshua does not see any difference with the new medicines. We will keep they up for a month and then decide what to do. They said to watch for concentration problems with the Lyrcia.
Joshua said, sometimes when he says something he promptly forgets what he said. So, we will see....

Joshua, with his walking stick in his hand walked with Sam and I around the neighborhood last night.

Joshua is also 20 lessons from finishing first year algebra. This was started in 9th grade. I am going to give a shout. I for one will be over-the-top happy when he is done with that book.

I found out besides recovering from cancer, having neuropathy also makes one tired. I read this through a wellness clinic on line. The pain clinic doctor concured with that statement. I just wished I was told that a couple of years ago.

Joshua also went to the eye doctor to get his glasses exhanged, there was something wrong with the lenses.

After a busy week end with friends Joshua is resting up.
I am glad he is able to get out and about with friends.

Thanks for checking in -

Joy on this journey,
God's love and ours,
Leslie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Tuesday, May 23, 2006 10:26 PM CDT

Hi All,

Sorry for not writing sooner but I am so crazy busy.
Here is the latest on our Champion Warrior, Joshua.

The Pain Clinic went well. It was not what I expected though. First, let me say I was wrong when I told you they do not deal with problems of neuropathy. What they don't deal with is adults. As Joshua is 18 he is considered an adult. Dr. Frangoul 'begged' them to take Joshua. They were concerned Joshua was to go to adult onocology and he would be moved from them anyway. Dr. Frangoul assured them once a child is in children's onocology always they are always in children's onocology.

Our Nurse, Twila, was extremly thorough. She asked numerous questions and listened carefully to the answers that Joshua and I gave. Joshua told her how the pain was pretty much a seven at all times. He also told her it hurts in the upper arms, thighs, feet, and ankles. He said he gets numerous headaches, some that really hurt. (He had one that day.)

She was very sympathic towards Joshua. After the questioning, she and Dr. Hayes, a man of shorter stature and a musical note pattern bow tie, discussed Joshua in their office for at least 45 minutes. Then they came back to our room. (by this time I thought they had forgoton us). He asked Joshua questions. At the end of the questioning I was then 'allowed' to give my imput. He wanted to hear from Joshua, in Joshua's words alone first.

After that he examined Joshua. I was told he had quiet reflexes and was weak in the thighs and the lifting up of the legs.

After that we discussed medicines. Joshua is now atarting a higher dose of methadone, an extra 2.5 mg. Joshua is still at a low level, so all are o.k. with this. Dr. Hayes is adding an extra dose of Lyrcia. 300mg. three times a day now. We will had to watch for any problems with lack of focusing and concentrating with Joshua because of the high dose of Lyrica. They also are starting him on a once a week patch, Catapres-TTs Patch
0.1mg. The last pill is nortriptyline, 10 mg..
After all of Joshua's vacations. he will be weaned off of methadone and hopefully these other drugs can keep him methadone free. Then he can drive.

Dr. Hayes was happy to hear Joshua had gone four days without methadone. He said that tells him we are close to the answer for Joshua.

I thought a 'pain clinic' taught a person different techniques on how to handle pain. Either exercises, breathing techniques, or different ways to think when one is having heavy pain. I learned something new that day.

Joshua continues to do well on all other accounts and now hopefully we will get this neuropathy under control.

I thank God that Joshua IS improving daily. Yet, I continue to remember all the children and young adults we met that have died. I pray God's blessing on the parents of all these children who have gone before us.

What a journey this has been and we could not have done it without god and all of your prayers.

God Blessings and love,
Leslie, Les, Rebecca, Joshua, Sam and Joshua,Our Champion Warrior

Tuesday, May 16, 2006 9:11 PM CDT

Hi All,

After two days of rest from the school play, Joshua perked up and was able to work for three days at Lampo, Dave Ramsey's business where Les and Rebecca work. Joshua and about six other people packaged 4500, book mailings. He got paid and had free yummy lunches.
His weight is up again:) The first night after work he was tired but after that he did well. Last year when he worked at Lampo, his back really hurt and it was hard to complete the tasks. This time pain was at a mimimal. It is good to have times like these for we can see that he IS getting better.

This Thursday, Joshua is going to Vanderbilt's pain clinic. My understanding is they do not really work with problems like neuropathy. It seems their expertise is along the lines of other types of chronic pain as in lower back pain and the like. Like anything else that may seem helpful. we are going to give it a shot. It sure would be wonderful to have Joshua off the methadone.

Through all of this we remember all the answered prayers for Joshua and know God is waiting on His timing to answered this one with neuropathy.

Joy on this journey,
God bless and love,
Leslie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Tuesday, May 9, 2006 10:15 PM CDT

Hi All,

Today we went to see Joshua's foot doctor, Dr. Mac Arthur. Good news, Joshua's toes are doing very well. The good doctor checked the toes out and took a picture of them. Then he took a smiling picture of Joshua and me. He congratulated Joshua and said he was discharaged for good, unless something else happens to the toes. Dr. Mac Arthur told Joshua that he was proud of him and that Joshua and his family was an inspiration to him. He is a caring doctor we gave him a hug and off we went. Then the ending present was that he was not going to charge us for this final visit.

One doctor down three to go- lung doctor, wart doctor and Dr. Frangoul. We are getting there, it is just taking time.

Joshua has been paying the piper for being so busy with church and school last week. His body was aching so much yesterday that he took a total of a whole methadone and an oxycodone- something that he has been off of at least since December.

Dr, Frangoul was not in favor of Joshua taking the methadone and the oxycondone because he feels we are now going backwards instead of forwards.(they said if he had to well, then he had to) They are checking into a pain clinic for Joshua. Joshua had been on methadone for three years now-not good. We are all hoping this pain clinic will help the situation. I think it was a one time thing for Joshua with the oxycodone. We saved the last two oxycodones from last year just in case something like this would happen. It is not an everyday thing. Today he is feeling a little better.

Joshua is drinking well and eating o.k. I have to push the eating a little. I am trying to find calorie dense foods that he wants that don't have too much sugar- ( that stirs up neuropathy.)

Joy on this journey,

God bless and love,
LesLie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Thursday, May 4, 2006 9:44 PM CDT

Hi All,

We just got back from Joshua's school play, The Shoemakers Holiday. He had twelve lines - and we understood them all. He played a servant to a rich man during the time period of 1500 - 1600 A.D. I was SO happy for him to be able to be a part of a school function instead of just watching the function.

Joshua went for the blood test on Tuesday. Since he is drinking seventy ounces of water daily his kidney function was doing well. His liver counts were also fine.

Joshua continues to cough and not get anywhere with it.
His lungs seem fine. He had another x-ray on Tuesday. Just a little liquid in the lower left lung area - not enough to mean anything thing though.
On Wednesday we went to the lung doctor to have the cough checked out. He did the breathing test 56/72 was his best. He was using 56 percent of his lung capacity. That was a little lower than October's testing.

Dr. Moore, thinks Joshua might have his past allergies back. ( I gave Joshua shots for three years for allergies for dust mites and grass allergies.) If the congestion continues after the medicine, Levaquin, Dr. Moore is going to order a head CAT scan to check for a sinus infection. He believes once a transplant person reduces on their cyclosporine and prednisone past problems come back.

Joshua is looking forward to being able to walk around the block again. He had not walked since this little bout with coughing.

We continue to take the journey and thankful we have the Lord and you all with us.

God bless and love from us,

Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Hero

Tuesday, April 25, 2006 11:28 PM CDT

Hi All,

Joshua had a very good doctor visit. He gained a little weight and is now a robust 134.4 lbs.

Dr. Frangoul told Joshua that he was proud of him during today's visit, that is always good to hear.

Joshua told them how hard it was for him to breath while sleeping on his back and that he needed to sleep on his right side to breath properly. They sent him down for a x-ray which came back fine. Since he is coughing up 'junk' though they decided to put him on Levanqin, an antibotic stronger than his normal amoxicillin

Once again Joshua is able to reduce the cyclosporine medicne, we now are at 50 mg in the morning and 50 mg at night. Isn't that a praise the Lord.

Later this afternoon Nurse Cassie called and told us that Joshua's liver function was up. They are concerned that it might be GVH of the liver. The last two or three times this happened it was just the V- Fend medicine that caused the high numbers. I pray it is the medicine causing the high numbers which can be easily remedied.

The other thing that was cause for concern was his kidney function. His numbers showed he was not drinking enough. With all the medicines he is taking, his not drinking enough water causes the kidneys to be stressed out. I am making a chart for him to drink 70 ounces of water a day. I just have to force the issue before his kidneys receive more damage.

We go back to clinic on Tuesday to get his blood drawned and have the numbers rechecked.

Have a blessed day,
Joy on this journey,
Our Love,
Leslie

Monday, April 24, 2006 3:58 PM CDT

Hi All,

Joshua was able to go with his youth group to 'Acquire the Fire' in Nashville this past weekend. Acquire the Fire is brought to us by Teen Mania Ministries, located outside of Dallas. Rebecca went there the year Joshua had his transplant.

He certainly enjoyed the weekend but it wore his body out. I let him sleep twelve hours and had Sam wake him up at 11:00 A.M.

Joshua is back taking half a methadone every day. Today he took the half with two liquid Advil capsules. Neuropathy is just so painful. Joshua said maybe he is to minister to old people, he can ask how their neuropathy pain is doing and he can tell them how he is handling the pain.

We are going to the clinic on Tuesday. Joshua feels the congestion is back. This is better than waiting till Friday and having it get worse.

We will let you know how clinic went.

Counting it all joy as we journey,

Blessing and love,
Leslie

Friday, April 21, 2006 12:08 AM CDT

Hi All,
Joshua stayed home from youth group on Wednesday night. His throat was still hurting; he was having harder time breathing and was also coughing up ‘junk’. He felt something was settling in his chest. We had talked to our nurse, Cassie; she said if it got worse we would have to come in. There was a small concern it might be pneumonia.

Late Wednesday night, around 1:25am in the morning, after 4 hours of pain with the neuropathy that was rated as a 10, Joshua took a whole methadone. He told us in the morning. We told him we were proud of him for lasting four days. We were all disappointed though.

On a good note Joshua felt he was on the recovery and felt the chest pain leaving. Because he felt better we did not have to the clinic today.
Nurse Cassie said just because he had a methadone one time does not mean he has to start back up on it again. Cassie was also very proud of Joshua for going four days with no methadone. I now cut the methadone in fourths hoping taking just a little will take the edge off the pain for Joshua. (He was taking halves before). He took a fourth last night and it was enough to stop the pain and get him to sleep. Joshua IS going to get off this pill, with the Lord’s help, it is just a matter of his timing.

Joshua’s throat pain is still troubling him. He also is still having just that sick feeling. Other than that he is on the upswing and looking forward to walking around the block again.

Have a great weekend

Joy on the journey,

Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Tuesday, April 18, 2006 10:02 PM CDT

Hi All,

Joshua is going on his fourth day of NO METHADONE.
It has been difficult and he is taking Advil for the pain.
We are all hoping and praying he will be able to stay off of this drug forever.

On Monday Joshua had a reoccurance of fever, a low-grade one of 99.7 it would go down then go back up. His usual temperature is 97.6 or 97.8.

Today, GVH kicked in, Joshua was dragging and no homework was done. He was resting on the couch a lot. We talked to Nurse Becky on Monday. She reminded us that when Joshua gets sick, it activates the GVH. Hopefully when he gets all better, the GVH will calm down. If it doesn't, we will have to have the cyclosporine rechecked.

Hopefully he will make it to school on Wednesday. We've been keeping him away from the public because of the fever he's been fighting.

We are enjoying the warm weather in Tennesse. I am planting some red petunias and red salvia which will be mixed with my yellow daylilies.

Hope all is going smoothly with you all.

Continuing with God on this journey,

Leslie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Saturday, April 15, 2006 5:45 PM CDT

Hi All,

( I put an update on the bottom of this letter for those who read this earlier and are looking for an update)

Joshua had a wonderful week. He has been able to walk around the block, about one-third of a mile with a walking stick. Tommorow is the first day for Joshua to go with out methadone. Is'nt Easter a great day for that to happen, a day of new beginnings. Grit and determination along with the neuropathy pain getting a little better is what is propelling Joshua to be methadone free once and for all.
Keep praying that he can stay off the methadone, he so wants to drive once again.

Another prayer request, today. Joshua has been feeling a little worn out. He has a sore throat and headache along with a temperature of 101.3. We talked to Dr. Engel and Vandy and if Joshua gets to 101.5, yep, you guessed it, we have to go to the hospital. I have to call Dr. Engel back in a hour to let him know Joshua's temperature.

Lord, we pray your healing hand on Joshua.
We thank-you for the stripes that you took for Joshua's healing. Fever be gone in Jesus name.

Thanking God that He is with us on this journey.

Blessings and love,

Leslie

The fever Joshua had risen up to 105.5.
Dr. Engel allowed us to stay home and give Joshua tylenol. We had to call him back in an hour for a update. Happily, I was able to tell him the fever went down to 99.7 and Joshua was feeling better.

We had to call him in two hours for another update, again, I was able to report no fever and Joshua was feeling well. (THANKS FOR ALL THE PRAYERS - THEY WERE ANSWERED!)

We now just have to keep an eye on him. I was told if it is a bacterial infection tylenol won't keep the fever at bay.

Happy and blessed Easter to you all.

HE HAS RISEN...... HE HAS RISEN INDEED

Saturday, April 8, 2006 10:21 AM CDT

Hi All,

Joshua continues to do quite well on all accounts reducing cyclosporine has not bothered Joshua’s body. Joshua said to me, “I know my bone marrow has grafted.” At this exciting pace Joshua should be off of the cyclosporine by September. Dr. Frangoul reduces the medicine 25mg. a month. Joshua is at a total of 125 mg a day. After this medicine is finished all of the rest of the medicines except for two will be discontinued. Those two are Lyrica and the methadone which are for neuropathy.

Joshua is in the midst of trying to get off the methadone. I won’t say it is easy because of the pain of the neuropathy. We pray many times a day that the pain would go in Jesus’ name. Practically speaking, going to bed by 10:00 p.m. also helps his body not to get overtired.

We were sent an e-mail from the boys’ school telling us that there were several viruses floating around the school,so we kept Joshua home.
I took Joshua to the eye doctor yesterday. We were told to get the Refresh for his bloodshot eyes, which I am sure is caused by the methadone. His eyes have more nearsightedness on one and some astigmatism in the other. Joshua is happy to get new glasses since his eyes have been bothering him.

We were told that Joshua has the start of two different types of cataracts, one in each eye. We know this is one ramification of having a bone marrow transplant. It becomes a watch and wait situation.

Joshua is enjoying his drafting school and is working on designing a simple home. He also is loves (his word) his algebra teacher. In the beginning of May Joshua will be in the school play. I am glad he can have some normal school times.

Keep praying that the neuropathy would be GONE in JESUS NAME.

Thanking God for his faithfulness to Joshua 13:1
Joy on this journey,
Blessings and love to you all,
Leslie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Saturday, April 1, 2006 5:55 PM CST

Hi All,

Joshua has had pretty smooth sailing these last five weeks. So good that we were able to lower the cyclosporine medicine. That is right, Joshua, for the first time made it at the 75mg 2x a day level. He is now able to lower the medicine further, to 50mg in the morning and 75mg at night. We thank you for your prayers concerning this and thank God for so graciously answering, “Yes.”

Joshua has also gained two pounds; always a good sign.

I know his counts are fine because they did not even give the blood count paper to us.

Joshua still struggles with the neuropathy and soon hopes to feel good enough to start the methadone taper. He wants to drive. Unfortunately he has to be completely off the methadone for that to happen. He had some nausea today. He was doing much better tonight however.

We are starting up with an algebra tutor once again. He spent 2 hours with Joshua today. It's a 'Praise the Lord' that he was able to sit up for that long while working on the math. Just before the tutor got here, Joshua was in bed because he felt so sick. It's important for Joshua to start on his math again because I really want to get him in geometry next year.

We are doing well as you can see.
God bless and keep you
His joy is with us on this journey,

Leslie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Monday, March 20, 2006 6:42 PM CST

Hello everybody,
This is Joshua and today I am going to tell you about my testimony night. When I got there I was nervous because I knew I would be speaking in front of a lot of people. I also spotted a few new faces so I felt a lot of pressure that everything I do tonight better be the way I had planned. I set up the pictures on power-point and prayed that there would not be a problem as I shared my testimony. During worship my dad noticed I had the jitters about giving my testimony and called the pastor over. They both prayed for me and then I gave all my worries to God.

When they introduced me I went up grabbed a stool and put my notes on the podium. I was very nervous at first, because now all eyes were on me. At first I seemed out of order because of my shaky voice and moving my Bible off the podium, so I would have room for my notebook. I stood up from the stool and started sharing. But then I started feeling really comfortable up there and I felt a passion to impact everybody for Christ and God’s glory. That is what I had been praying for, for over a week. I ended up standing the whole time I spoke. Which was about forty minutes. At the end I hit them hard about how you need Jesus and once you have Him how he helps you through life if you just ask. Well five teenagers gave their lives for Christ, and six turned their lives around for Christ. I was impacted just watching.

The youth pastor already wants to set me up at other church’s around Maury County maybe even Franklin. God’s glory was really shown that day. I look forward to sharing God’s grace in my area and beyond if that is what God has called me for.

I personally hated getting cancer, but I might as well get some use out of being sick all this time, since I do not have a choice. God bless you and keep praying! Joy on this Journey I take. - Joshua

Monday, March 13, 2006 10:52 PM CST

Hi All,

Joshua had a little set back last night. He was up later than the rest of us because of his preparing for his testimony. He needed to literally climb up our stairs on his way to bed. He really shouldn't be staying up late and his body lets him know this. He was back to being fine this morning after a good nights rest.

Speaking of Joshua's testimony; he is going to share his full story for the first time at New Life Church Wednesday night. We've shared bits & pieces through the years but never in it's entirety and not by Joshua. He'll be primarily speaking to the youth group but many adults have already stated that they will be there. For those of you in our area, please know that you're more than welcome to come and hear him challenge his fellow teenagers to make Jesus their all in all as he has learned to do. It's one thing to be told something by an older adult. It's altogether different when the challenge comes from one of your own. We really see Joshua being used by God to help his peers think differently about the direction their lives are going in.

Please pray that God uses Joshua in a mighty way Wednesday night. Thank you once more for your faithfulness.

With much love and appreciation.
Leslie, Les, Rebecca, Sam and our Champion Warrior Joshua.

Tuesday, March 7, 2006 9:38 PM CST

Hi All,

Joshua played the drums for church this past Sunday and did a fantastic job. I’m telling you all, it was so good to see Joshua playing the drums. I’d much rather see him upright than lying horizontal in a hospital bed.

With the busyness of last week, Joshua had a nap both Sunday and Monday. We went to the foot doctor today. It looks like Joshua has a yeast infection on his toes. We got a prescription for the problem. Other than that, his toes are healing well and we do not have another appointment for another month.

Dr. Frangoul’s nurse, Becky, called us to tell us that the MRI of Joshua’s sacrum is fine. They were looking for a mass but did not see one. Praise the Lord news to me, though we still can’t explain the leg pain and other problems he is having waist down.

Joshua is doing well on all accounts except he is having some cramping in the lower intestinal area. Pray with us that it will go away. We do not want ANY signs of GVH.

Joshua is hoping he can begin to taper off of the methadone the next time he sees Dr. Frangoul. We are all looking forward to the day he is methadone free.

We are enjoying the respite on this earthy journey.

God bless and love
Leslie, Les. Rebecca, Sam, and Joshua, Our Champion Warrior

Saturday, March 4, 2006 12:08 AM CST

Hi All,

We are back on the internet!

Joshua had a FANTASTIC week. I dropped Joshua off at school on Tuesday. He gave me a kiss good-by, opened the school doors, then turned backed at me with his wide smile and waved. He looked so EXCITED and HAPPY to be back at school. I was a proud mom. It was as if I was dropping my son off for his first day of school.

There were no naps to be had by Joshua this week. He went to school every day, youth group, adult band practice because remarkably he's playing the drums for this Sunday's worship at New Life Church. He even had friends over for supper and a movie at our house on Friday. We thank God for His grace towards Joshua.

This morning Les took Joshua to Vanderbilt for an MRI of the lower back called the sacrum. They are still trying to get answers for the nerve problems and other body problems that plague Joshua from the waist down.

Joshua eats two – three good meals a day. The lowering of the cyclosporine has not changed him physically at all. We are all looking forward to the day when Joshua is done with ALL of his medicines. THAT WILL HAPPEN IN THE NAME OF JESUS. Just the thought is too exciting for me. WOW!

Flying high with the Lord on this journey,

Thanking God for all He has done and all he continues to do for Joshua

With much Love and appreciation for your continued prayers,
Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior.

Monday, February 27, 2006 9:53 AM CST

Hi Everyone,

Unfortunately we don't have internet access at home right now so this is Rebecca writing from work!

I wanted to pass along the news that Joshua is doing so much better! There was a visiting pastor in town this past weekend with a powerful healing anointing who heard about Joshua and really wanted to pray for him. We took Joshua to get prayed for and I was amazed at how genuine and simple this pastor was. He's from Africa and was just in the states for a little bit. His prayer was filled with power yet very simple. Though we were only there about 10 minutes, I think God really worked through this man. Joshua went from walking with a cane on Friday morning to climbing a tree on that same evening. Isn't that awesome? It appears that God was answering our prayers even before Joshua met with this pastor on Saturday. We're receiving Saturday's prayer as saying "IT'S DONE"

We always praise God for Joshua's healing because we know our God is a healing God and that by Jesus' stripes, our Joshua, the champion warrior is healed!

We love each and every one of you dearly. Thank you for your prayers. The more you pray, the better Joshua gets. Have a wonderful day everyone!

Love in Christ,

Les, LesLie, Rebecca, Sam, and Joshua, our Champion Warrior

Friday, February 24, 2006 10:34 PM CST

Hi All,

Joshua had a wonderful doctor visit. His weight is holding, though he just eats two meals a day. His counts look good, they did not tell me what they were they just shared the good news. The liver numbers were almost back to normal. The big news with that is that Joshua is able to lower on the cyclosporine medicine. Joshua needs big prayer for this because his body has never been able to stay at this size dose which is 75 mg. In the morning and 75mg. at night.

They had a nurse take out the pic line today. Joshua was hoping to have it stay in and use it for an I.V. if necessary. He gets tired of getting pricked and poked at. At least he could used it for the blood draw on Tuesday and today.

Tuesday, when we got home from the clinic, Joshua, was getting out of the van and fell. He said, his ankle became weak and he could not hold himself up and just fell on the stone driveway. I picked him up under the armpits and helped him into the house onto the couch where he slept for three hours.

Today his ankles and hips felt so sore. He was unable to bear down a lot of weight and needed his cane for the clinic visit. He remarked that he felt like an old man. I am happy to report that by mid-afternoon he did not need the cane and felt o.k.

Joshua finished off the night doing well. He still needs to drink - same old story. Dr. Frangoul could already see that by looking at his blood chemistries.

On a sad note, while we were in the hospital, we found out that Lukas Parks, an eighteen year old boy, who was in the Ronald McDonald at the same time we were had passed away about a year ago. Another boy, Matt McFadden, age eighteen died this past January 28th. Joshua and I had met Matt and his parents, a wonderfully solid Christian family. Dr. Frangoul wanted us to talk to them and tell them how our transplant went and to see if they had any questions about the procedure from a patient standpoint. We had talked and prayed with them.

It is times like these I wonder, “Why us Lord?” “ Why did you allow Joshua to live while all these other boys and girls died?” Right now I do not even know anyone ‘child’ in Joshua’s age group, 16-20 who has survived AML type leukemia. What can we say for us except, “Thank-you Lord for your mercy, and Lord,continue to have mercy on these families that have lost a dear child."

Joy mixed with sadness on this journey,

Love and God bless you all,

Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Monday, February 20, 2006 9:27 PM CST

Hi All,

Good news all the way around! Joshua's liver numbers are coming down beautifully, there will be no liver biosopy! The one number that was 323 is now down to 90, normal is 41. The other liver number that was 4. is now 2.2, normal is less than 1.

Joshua's platelets have soared from 97 to 151. He is now in the low normal range.

His breathing of oxygen is at 97 percent. A totally healthy person is 99 - 100.

He also tested negative for the flu so he is able to stop Tamaflu, one of new medicines from last week.

In the weight department he is 132.2. This is a two pound gain this weekend.

I am amaze at how Joshua bounced back from this dip in the road. God is a healing God and I am sure thankful for that.

Rebecca and I were talking about last Sunday when she saw Joshua on the oxygen mask. She told me she felt like crying when she saw him like that. To look at him now you would not believe he was in the hospital last week working hard to breathe. I look at him now and he looks great!

Joshua still has the pic line in. I give him fluids at night. In the middle of the night I change out the bag to make sure he gets his complete 1500cc of saline. I was nervous at first working with the pic line, setting up the infusion of saline bag and completing the work with more saline and heparin, which stops blood clotting in the pic line. Now,once again, I am in the swing of things, doing like I did to Joshua in 2003 - 2004.

Since Joshua still has the pic line in he is to stay home from school. Dr. Frangoul doesn't want to chance Joshua getting an infection. Hopefully, Joshua will be able to up his drinking to where he won't need it. Our prayer request is Joshua will be able to drink enough on his own without feeling any nausea.

Tomorrow, February 21, is the return visit to Dr. Mike for the wart condition. This coming Friday is our next clinic visit to see Dr. Frangoul. Just to make sure all is o.k. and hopefully we will be able to take out the pic line.

We will see the foot doctor next week, I just could not have another doctor appointment this week. I am glad we are blessed with wonderful doctors, but, I am doctored out.

Thanks for all your prayers for Joshua,
At peace on the journey,

Leslie, Les, Rebecca, Sam, and joshua. Our Champion Warrior

Saturday, February 18, 2006 6:59 PM CST

Hi All,

We were home by 12:00 yesterday. I was happy about that, because I needed to get the house and meals in order before I went to work that night.

An hour before I left for work the home health nurse came in and set up Joshua for 12 hours intervenous fluids, 1500 cc. worth. Right now we have five days worth of fluids to give him since his kidneys seem to be working overtime and need the constant fluid.

My continuous job with Joshua is now to keep him eating and drinking, not the easiest job. He needs to gain weight in case something else happens. Right now he is 130 and six feet tall not a good combination.

I am taking Joshua to the clinic on Monday. We were going to go on Tuesday, but, Joshua's liver numbers are sky high. Dr. Frangoul wants to check his numbers with Joshua's bloodwork. Normal numbers are, less than 1. and Joshua's is 4. The other number is suppose to be 41 and his is 323. When one who has a bone marrow transplant and gets the flu the graft verse host disease can wildly act up and cause all sorts of problems, one of them being GVH of the liver.

If the numbers are still high on Monday they will order a liver biosopy to see if it is graft verse host disease. If it is, they will put him on more prednisone and up the cyclosporine. This will be disappointing because we were on our way to lower the cyclosporine. Getting off of that drug will enable Joshua to get off of the others.
The last time the liver count were high it was because of another medicine of his, called V-fend. Would you agree with me in prayer that it is the medicine not GVH causing the high numbers. If it is the medicine all they will have to do is take him off of it for two weeks.

Good news, in one day Joshua's platelets rose from 68 to 93. He is almost to the 135 normal range.

He is getting back to normal life. Yesterday, he and Sam took a little walk. Today, he is working on a puzzle.

It is good to be home. I will on Monday and let you all know what happened.

Thanking God for all of you on the journey with us.

God bless and love,

Leslie, Les, Rebecca, Sam, Joshua, our Champion Warrior

Friday, February 17, 2006 5:28 PM CST

Hello everybody,
JOSHUA IS HOME FROM THE HOSPITAL!!
PRAISE GOD!!
This is me,Sam. Mom is VERY busy right now and is leaving for work. She just wanted me to write a quick journel and to let all of you know that she is going to write tomorrow night. Real quickly though, why did the phone go to the doctor? Because it kept hearing a ringing. I just made that one up. Thank-you very much for all of your prayers and messages. They are all very appreciated.

Good-bye for now,

Dad,Mom,Rebecca,Me,and my Champion Warrior Brother Joshua

Thursday, February 16, 2006 8:51 PM CST

Hi All,

We had a little slower day today. After our senior pastor, youth pastor, and their wives came and visited us, Joshua had some intervenous Benadryl for nausea and slept three hours. He awoke only because his nurse needed to take his vitals. Joshua had a headache but that along with the nausea was gone after the nap

Joshua has had 10.1 ounces of water and 850 calories I am hoping for 1000 calories and another bottle of water (10.1 ounce) before the night is over.

Joshua gained a couple of ounces today. His platelets came up one point, a big 68! The average is 135 – 370, not 150 – 370 as I have previously stated.

We are still planning to leave the hospital tomorrow and be home by noon. Dr. Frangoul wants him to stay home till our Tuesday clinic appointment. They consider him to have the flu until his nose swab checks are negative.

Joshua’s blood pressure is 134/96. They do not want that bottom number to be over 80. I wonder if any of the new medicines are the problems. Joshua would like you to pray that the blood pressure goes down, because sometimes because of it, he feels dizzy and faint.

Well,the next journal will be written at home. Amen and Amen.

We are on to the next part of this journey. God bless you all,
Love,

Leslie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Wednesday, February 15, 2006 6:40 PM CST

Hi All,

You all are wonderful prayer warriors. The headaches Joshua has been having are reduced from a 10 in pain to GONE! He was able to watch some videos now that he has no head pain.

Joshua has some slight nausea which comes on and off. Even with that he was still able to graze in eating today. His menu consisted of Rice Krispies and whole milk, a small fruit cup, some grapes, soup and saltine crackers. He just finished an 8 oz. can of Boost, not the best tasting, but it has 360 calories. A couple of times his stomach did not feel well, then he just gave it a rest. Joshua has no fever.

The lung doctor, Dr. Moore, said the lungs are doing great, he doesn’t hear anything to be alarmed about. Joshua is breathing so well that they removed the finger wrap which is attached by a cord to a screen which records his heartbeat and breathing rate. He doesn’t have to have any extra oxygen day or night now. He is still getting breathing treatments and hopes to be finished with them today.

Yesterday, I told Les, our pastor, and his wife, Lori, that I think Joshua is doing so well I think he will go home on Friday. We prayed that it would be so. It was an answered prayer because this morning Dr. Frangoul said if all goes well, and Joshua eats, he will let him go home on Friday. God has been so good to us and answered our prayers for health for Joshua.

Joshua continues to need prayer in these areas;
His bililrubin, liver function is 1.8, I am not sure what a normal number is though. Right now he looks jaundiced with yellow tinge to the whites of his eyes and a yellow cast to his face and chest.His platelets are now at a 67. They have continued to drop. Hopefully, they will rise now that he is getting healthier.

They are going to keep the pic line in and continue to hydrate him at home. His kidneys are working somewhat under normal. Keeping him full of fluids will make his kidneys happy. Joshua does not daily drink enough liquids. This makes it hard for his kidneys to work properly and get rid of all the medicines he is taking.

I want to thank all of you who have called; prayed, left notes of encouragements on Joshua’s Web page, or sent something for him to enjoy in his room. Our family is blest to be part of the kingdom of God at large.

Jesus’ joy on this journey,
Love and blessings to you all,

Leslie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Tuesday, February 14, 2006 6:54 PM CST

Hi All,

Well, I feel better after a couple of hours of sleep and I awoke when Dr. Frangoul came in for the afternoon check.
Joshua is having enough breathing treatments from the respiratory team to open up his bronchial tubes so that he no longer needs oxygen during the day. The pulmonary doctors are now in agreement that there is no pneumonia. That is awesome, because on a good day he is breathing at 60 to 70 percent of a normal person with pneumonia it would drop to 30 to 40 percent.

Joshua had a bath and then sat up in a chair today for about thirty minutes. He felt very weak walking, but I told him anyone would feel that way being in bed for three days. He still needs prayer for extreme nausea, which means he is eating not more than a couple of crackers. He has lost eight pounds which puts him at 131 pounds. Dr. Frangoul is not happy with that and wants him to have a feeding tube since he is not eating. Joshua was o.k with that and had the nurse put it in but it did not go so well. The tube made a wrong turn and came out of his mouth. Joshua was so miserable that Les told Joshua to try to eat and if he still can't eat then try the tube insertion again.

He is still taking morphine for the severe eye and headaches pain. Joshua is thinking of trying dilaudid for the pain because morphine does not last long.

His blood pressure continues to do well.

His last temperature check was 99.4

At 8:00 a.m. the pic team came in the room to insert the extended dwell peripheral catheter, the pic line. After giving Joshua a shot in the arm to numb the pain of a pic line they tie a band around the arm. Then, they take a razor to the vein to be used and make a small slit. First the nurse puts in a 41cm wire. Then she puts in the 41cm tube. Both wire andplastic tube starts in the right basilic vein which is in the upper arm; continues to the superior vena and finishes off at the start of the heart. The nurse told me if she had a MD after her name she could insert the tube into the heart.

After watching this I felt like I was going to faint and get sick. I have had this happened before, I guess I am not good at watching my family get worked on. I sat down and had some orange juice and felt better.

To wrap things up, we ask for prayer for a normal body temperature, no more headaches, and the ability to eat with out having nausea.

Joy on this journey,
Blessings to you all,

Thanking you for your prayers,
Love

Leslie, Les,Rebecca,Sam, and Joshua, our Champion Warrior

Tuesday, February 14, 2006 3:03 PM CST

Hi All,

I will write in more depth later tonight. Joshua continues to do better.
Rebecca and Sam were home ill late yesterday. Les and I switched places yesterday late afternoon; he with Joshua and me at the homefront. I took care of their needs, made some meals for the next couple of days; and did some general housekeeping. After that I drove back to the hospital about 10:30 p.m.; and kept up with Joshua and his needs. I just are too tired to write.
I am going to get some delicious sleep and write later tonight.

Resting on this journey,
Leslie

Tuesday, February 14, 2006 0:21 AM CST

Hi All,

Each day is getting a little better for Joshua. His blood pressure is now back to his normal 117/65.

His chest x-ray continues to improve. The pulmonary and the infectious control doctors are hoping and believing the little problem with his right lung is atelectasis instead of pneumonia. Atelectasis is when the air sacs collaspe a little bit. (Now you can say you learned a new word today.)

The respiratory team is giving Joshua breathing treatments in hopes of clearing the gunk out of his bronchial tubes and getting him off the oxygen. He is wearing the tube that goes in his nose instead of the mask. Joshua likes that better than the mask.

They gave him IV Vankamyacin (phonetic spelling) today and it turned his face and neck a purplish red. When that happens it is called 'Red Man's Rash', the nurses just slow down the delivery of medicine and the color lessens.

Joshua was hearing things while he was on morphine. He told me, "Yo, has a family out there - she wants me to meet them." I told him you can't see anyone now. He replied, "She knows." Yo is one of Joshua's first nurses. He also talked about seeing other people in the room. It is always interesting to hear what he says during the morphine times.

Joshua is now on the 6th floor in room number 6421.

Joshua has agreed to them inserting a pic line as long as he can have dilaudid. Dr. Frangoul agreed because the pic line will be easier for everyone. If he's not able to eat soon, they will be forced to put him on intervenous food (TPN). This unfortunately is hard on the kidneys but the upside is to get much needed nourishment in his body.

Please pray that he'd be able to eat without getting sick and that the head pain would leave him which would enable him to get off these extra drugs.

Well, I am going to bed. God bless and thanks for keeping up with us.

Jesus' joy on this journey,
Love and God's blessing,

Leslie

Monday, February 13, 2006 10:35 AM CST

Hi All,

I have some good news; the fever has broken and Joshua temperature now is 98.5. He also is more alert and has even asked for Rice Krispies.

Dr. Frangoul was in and said Joshua would be here at the hospital 7 to 10 days. The flu, for Joshua, can be a disaster because of his being immune suppressed. Having the flu, for Joshua, lowers his platelets, the graft versus host disease acts up, and his one good lung is stressed. The left lung is of little use because the lower left lobe was removed and the aspergillus fungus, has scarred the tubes leading to that lung.

Dr. Frangoul was not happy that Joshua was at school this time of year because that just too many kids to be around during the flu season.

They have set Joshua up to get the immune builder IVIG today.

Since they are now doing so many medicines by IV they are going to put a pic line in to rest his veins. I will write more about that then.

Joshua still is on the oxygen.

They want to get him down to the 6th floor with all the other hematology patients, but since the hospital is full, that move is uncertain.

They are trying all different types of nausea medicines since he has some strong nausea. Since the Bendryl is not controlling the nausea, they have added phenagren in hopes to settle down in the stomach area.

Since he still has a strong headache they are giving him a dose of morphine then the pill, hydrocodone.

Thank you for your prayers; they are being answered.

Jesus' joy on this journey,

Love,

Leslie,Les, Rebecca,Sam, and Joshua, our Champion Warrior

Sunday, February 12, 2006 10:38 PM CST

Hi All,

Joshua is still on the oxygen mask. He was feeling nauseated so they gave him some more Bendryl. It is the drug of choice for many children who have gone through chemo to quiet down their stomachs. Joshua has been able to takes some of his medicine by mouth. We give him one pill every one-half hour. He takes it with a sip of water and then we let him rest. We got five medicines down that way. It seem to take forever for them to transfer his meds.to IV form. In fact we have not received any today. As they say,"Tomorrow is another day."

His platelets are at 77. Our nurse is not sure why they continue drop.

They have the a respiratory person coming in every four hours to check his breathing and have him use a spirometer. A device where one exhales into and then we measure the output by watching the little disc inside of it rise. When he is healthy he can work it 100 percent. Now he is at 50 percent.

The last temp reading was 99.6. Your prayers to our healing God have been heard. Thank-you so much for your faithfulness.

The chest x-ray showed a little'stuff' that they were not sure of, if it was the start of pnemonnia or nothing.
I am sure they will x-ray him tomorrow and we will know more.

He has not has any food in two days and just some sips of water. He is keeping the sips down so that is a praise report.

I think Joshua looks better in the face except for his eyes they look bleary and very bloodshot.

Joshua will stay in the same room on the eight floor 8531 because all the beds are filled.

Les stayed with Joshua giving me a break while my brother, Todd, Rebecca, Sam and Mike Pfieffer took me out for supper and good conversation.

I will write tomorrow after then doctors come in.

Jesus' joy on this earthy journey,

Thanks for checking in on Joshua.

God is good all the time.

Leslie

Sunday, February 12, 2006 4:19 PM CST

Hi All,
This is the second journal of the day.
Joshua's temperature continues to climb despite Tyenol it is now 103. Joshua is getting a chest x-ray now.
His breathing is not good so he is on oxygen face mask. They called up the hematology doctors to check him out again.

God is our strength and refuge a very help in time of trouble.

Thank you for your prayers to our healing God.

Joshua was old and advanced in years Joshua 13:1

Leslie, Les, Rebecca, Sam, Joshua Our Champion Warrior

Sunday, February 12, 2006 12:52 AM CST

Hi All,

We will be here another night for sure. His temperature is 101.2. The nurse continues to fill him with fluids, good thing since he is unable to drink anything at this time. I gave him two pills this morning which he promptly threw up thirty seconds later.

Dr. Whitlock, one of the doctors which has been with Joshua since the diagnose of leukemia was one of the doctors making the rounds today. Dr. Domm who met Joshua in the summer on 2003 was also here.

As I said before he has a 'good' case of the flu, and it will just have to run its' course.

Joshua's blood pressure is up to 145/90 so they will add Norvasc to the other medicines he is taking. Since Joshua is unable to take any pills by mouth they are putting all the medicines I.V.

His platelet count is 82 as of yesterday, normal is 150 - 350. Hopefully we will see Dr. Frangoul tomorrow and he will have some insight on that.

Dr. Whitlock wants to move Joshua to the 6th floor, since he is a hemetology patient. We just won't be on the wing of his favorite nurses.

They just took his blood pressure again and it is 137/92. Dr. Frangoul does not like the bottom number being over 80.

This will pass and he will get strong again. It is funny how I can be in the hospital and feel right back at 'home' like we never left. Yet, I have forgotton some things and once I remember them I wonder how I could have ever forgotton them.

I will write tonight-Enjoy your day of rest.Thanking God for your prayers because He is the God that healeth thee.

Thanks for taking this journey with us.

Love,
Leslie Les, Rebecca, Sam, and Joshua Our Champion Warrior

Sunday, February 12, 2006 0:25 AM CST

Hi All,

Les and Joshua spent over three hours in the emergency room before they got a room. Joshua came in with a 104 fever by the time they got to the room it was 102.2. Now when they just checked it it went back up to 103.3, so they gave him Tylenol. The blood test showed he has the flu. It has just hit him hard. They are loading him up on fluids which I am happy about since he has not done any eating or drinking today except when taking his pills.

He slept the whole time Uncle Todd and Sam were here in his hospital room.

Sam and I visited nurse Adele on the 6th floor. She was one of the nurses who has been with Joshua through thick and thin she was not suprised to see me. She keeps up with Joshua's journals and saw he was not feeling well. I took her to the waiting area outside the myleo area to see Sam, she could not get over how big Sam was. I think she has not seen him in two years.
(We love you Adele)

Joshua could not go on the myleo floor because they were all full and Joshua with having the flu would not be a good thing for children with no immune system to be around. We are on the 8th floor.

Thanks for checking in, Keep the prayers coming.

God's grace on this journey.
Love, Leslie, Les, Rebecca, Sam,and Joshua Our Champion Warrior

Saturday, February 11, 2006 6:12 PM CST

Hi All,

I wrote earlier this morning if you want to see what was happening. Joshua has a fever now of 104. Les took in Joshua to Vanderbilt. If he has to stay over I will take the 'next shift'. As we know we will write.

Keep the prayers coming,

God's joy on this earthly journey,

Love,
Leslie and the rest of the family

Saturday, February 11, 2006 11:06 AM CST

Hi All,

Once again I am very busy. I will write about the week in Texas this coming week.
I wanted to tell you all that after Texas and going to school three days in a row, Joshua has worn down and is
sick with a low grade fever. If it gets to 100.5 I will have to call the doctor. It has been so long since this has happened that I have forgotton if they will put him in the hosital at that temperature. Reason for that is he is on prednisone which can mask a fever meaning it can be higher than it is actually showing.

He said his body is wiped out and has nausea and feels dizzy. He is on the couch with my older brother Todd, who came down yesterday from Wisconsin. It happened to by my birthday on Friday so it was fun to celebrated with him here.

I have to go to work now.

Pray the fever goes away so there is no hospital visit.

God bless,

Jesus'joy on this journey

Leslie

Wednesday, February 1, 2006 4:42 AM CST

Hello Everyone,

Joshua had a geat foot doctor visit on Tuesday. He is feeling better and did not nap yesterday. Thanks for all the prayers that went out for him.

Les's mom died unexpectly yesterday. They believe she had a stroke in her sleep. She, Joan, has had many physical problems but we were all 'shocked' at finding out.

She was a super mother-in-law, so loving and always had a listening ear that I looked to her as a mother. We are all going to miss her deeply.

As it is said and is true with Les' mom, we are happy for her knowing she is in heaven. We know she had Jesus as her personal Savior. If you do not know what that means e-mail me @ dancingfmd@aol.com and I will be delighted to share the good news of Jesus's love for you.

Pray for Les's family and especially our children for they have not had to face the death of a loved one so close to them before. Pray for Les's dad as he finds himself alone after 54 years of marriage.

We're leaving this morning to catch a plane to Texas. Please pray for traveling mercies for all of us.

Thanks for praying for yet another journey.

Love, Leslie, Les, Rebecca, Sam & our Champion warrior Joshua.

Monday, January 30, 2006 9:36 PM CST

Hi All,

Joshua played in the church band on Sunday. I am always happy when he can do something 'normal'. On Sunday on two different occasions, about ten hours apart he had some problems with his legs. He wants to get up but it feels like there are 100 pounds weights on his thighs and he can't move. The first time it happend he crawled to get what he needed and after a little bit the weighty feeling went away. The second time he called for Rebecca to get what he needed. He has had this before on occasion but not twice in one day. I called Dr. Frangoul, he said if it happens again in the next 24 hours to bring him in the clinic.

Joshua was very sleepy today and not because of medicine.
I just do not know what to do concerning his life. It seems like it is so difficult for him to get completely well and get on with life. I never thought I would still have this journal and there would still be things to write about three years after diagnose.

Thanks for being here for us. Your support and messages means alot to us.

I am continuing learning to lean on having Jesus's joy through our journey.

God bless and love,
LesLie,Les,Rebecca, Sam, and Joshua our Champion Warrior

Wednesday, January 25, 2006 7:38 PM CST

Hi All,

Joshua continues to do well. We had three doctor appointments today. Yes, I did say three. We were pretty tired after all that chasing around.

We started out at 8:00 a.m. at Vanderbilt to see a dermatologist for the warts on Joshua's fingers. Dr. Mike, the dermatologist, told us it is difficult to treat the warts since Joshua is on the immume supression drugs, cyclosporine and prednisone. The 'virus' which causes warts can continually grow warts on Joshua. He can freeze the warts but after these are gone in another three weeks Joshua could have more. Wonderful to know.... Also once one has the virus for warts it forever remains in their system. Joshus had all five warts frozen. He comes back in a month for another application. It does sting when the doctor sprays it on the finger but I could not tell with Joshua he showed no sign of pain.

Next we are off to see Dr. Frangoul on the sixth floor. Joshua gained two pounds and is now 138.8. They decided lowered the cyclosporine another 25mg. Pray he tolerates this for he has never gotton pass this dosage which is 100mg in the morning and 75 mg at night. Dr. Frangoul said kids who have a bone marrow transplant from a stranger(unrelated doner) are usually off cyclosporine in two years. We passed the two year mark in October. They said he WILL get off it is just a matter of Joshua and his donor's bone marrow becoming friends.

We went to a couple of stores and then home for a quick lunch. Next was Dr. MacArthur in Columbia for a 1:30 appointment to check out the toes. The one the plastic surgeon did needed the heavy yellow gauze off to continue healing. the gauze was removed and the blood and yuck came out. I sure get squeamish seeing other people's blood.
The warts had started to hurt before we got to Dr. MacArthur. Joshua said after getting the gauze removed and that toe worked on somehow made the warts pain lessen. He said the pain of the toe took over. I guess one pain overrides another.
Joshua needs to continue to soak twice a day and we will come back for a recheck in a week.

He are still on the methadone. Getting off of that is another prayer request. He needs to get off of that so he can drive.

Thank for checking in and taking this journey with us.

God bless and love,
LesLie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Saturday, January 14, 2006 11:53 PM CST

Hi All,

Joshua is doing great for Joshua. He stopped taking the Tylox which had oxycodone and Tylenol. That was why he was so sleepy. All that and 5mg. methadone just too much. He had no nap on Friday. and made Sam and himself mac/chesse and fishsticks for supper.

He did well today except for some stomach cramping. He has not had this in a long time and he was a little concerned. Hopefully it was a one- time thing.

Joshua is feeling well enough to play base at church tomorrow. Which I am happy about.

This week he should be back in school, some more normalcy for Joshua.

On the upswing, and thanking God for that.

Joy on this roller coaster journey,

God Bless and love you all,
LesLie, Les, Rebecca, Sam, and Joshua, our Champion Hero

Thursday, January 12, 2006 5:55 PM CST

Hi All,

We went to the plastic surgeon this morning and he was pleased with the healing of Joshua’s toe. He also told us more good news; pathology did not fine any skin cancer in the granulation tissue from the toe. Dr. MacArthur also was pleased with the toes. We do not see him for another twelve days.

Joshua has been having nausea along with other stomach problems the last couple of days. He felt like he was to throw- up and asked me to drive REALLY smooth on the way home.

I helped him in the house and he went to the couch to sleep. When he awoke he had one-half of an egg he said it tasted like a lemon and some organic chicken broth. He went back to sleep for a while and woke up to go upstairs in my bed to be by me while I worked upstairs. I went to wake him at 5:00 to no avail but got him up at 5:30.

I talked to our nurse Cassie, they believe the Tylox, new medicine given by the plastic surgeon along with the methadone is making him sleepy.
They are not sure why he is feeling nauseous. Cassis said it would not be GVH
because the 25mg. that they lowered the cyclosporine is too small to have that type of effect. Besides, his cyclosporine level was high and they would have lowered it anyway.
Pray for a great day for Joshua tomorrow one filled with energy.

Thanks to you all and joy on this journey.
God’s blessing on you all.
Love,
LesLie

Tuesday, January 10, 2006 5:19 PM CST

Hi All,

We were at the out-patient surgery center in Columbia on Monday by 7: 40 a.m. They took Joshua in for surgery at 8:20 a.m., I could not believe how on time they were. Usually everything is back logged.

Everything went well. The plastic surgeon Dr. Falks worked on Joshua's left big toe in case plastic surgery was needed, thankfully it wasn't. They would have had to taken skin from Joshua's thigh which would have been another surgery. Dr. Falks 'sanded' the grandulative tissue down and sent it to pathology to make sure it was not skin cancer. Then he removed the nail and wrapped Joshua up to his ankle so he would have some support when he walked.
Dr. MacArthur worked on the right big toe and put phenol on it to prevent the nail growing back. They were unable to put pheno on the left one because the surgery was to close to the bone and could damage the bone. So.. the left nail may grow back the right has only a 10 percent chance.

Waking up from surgery was hard on Joshua. The last three times he has not done well. The nurse said his liver has to process the anesthesia and his liver being a little damaged means the process takes little longer.
For the next couple of days he needs to keep his feet elevated and walk in small doses. 15 minutes out of every one half hour.

Joshua will have to soak and rebandage his toes once to twice a day, (the one time is further down the road) for the next three months. Then ... We pray we are finished with the toes.

Thursday he see the plastic surgeon and Dr. MacArthur and they will check out the toes.

Dr. MacArthur is an old fashion doctor in how he looks after his patients. Joshua toes were bleeding after they discharged him. The nurses already wrapped one up futher to stop the bleeding. Well, we went to Dr. MacArthu's office and he came out of his office went to our car to check on Joshua's toes. He did not want Joshua to come in and jostle his feet any more than was needed. I think he is awesome and when I tell him that he looks suprised at me and said , I am a doctor. ( as if how else should he act) He really cares for his patients.

Oh, yes, I forgot to tell this exciting news, Dr. Frangoul is lowering Joshua's cyclosporine by 25mg. if we are sucessful we only have 200mgs to go. We are going slowly to make sure Joshua does not get GVH. When this is completed he can get off all the other meds.
All in all Joshua is doing well, though Joshua is a little bummed out with all this pain he generally has. It wears him down. Pray the pain would subside and he could get on with his life.

Thanks to all our prayer warriors.
Joy on this journey and glad God is with us,

Love, Leslie

Friday, January 6, 2006 10:41 PM CST

Hi All,

We got to the clinic in 21 minutes instead of the 40 minutes, that was exciting.

We or rather I saw Joshua's nurse, Linda. I went to the hospital floor to give the nurses some c.c. cookies.
She said they were talking about Joshua and other children who made it through cancer. They had had some children recently die and it was good to talk about about the ones who made it through.
I met up with another mother whose son, Devin, has been off of all medicines for a year now and seeing Dr. Frangoul just every other month now. His mom said,"You could not pick him out of a crowd." I believe Devin is 10 now. Happy for them and wanting the same for us.

Met up with John Marlin and his mom. It was good to talk to them and hear how John is faring. It hurts him to sit for long periods in school also. He easily tires like Joshua. It is good to talk to others who have the same problems as we do. We can cheer each other on.

Joshua is down to 136.8lbs from 140.4. Everything looked good for him except for his platelet count it was down to 113. The average is 150 - 350. Some of the other kids platelet counts were down too so Dr. Frangoul said it most likely is an infection. They will check it in a month.

On a side note, Our Dr. said when someone relapses their platelets go down then the white cells go down then the white cells shoot up. I thought about that and then decided not to fret about it. Then a couple of hours later Joshua said," I have never been so tired." ( Not a good thing to say to me because that is the first sign of a relapse) I decided it had been a long day for him and let him take a nap.

The same day we went to Columbia to the foot doctor. (Now you can see why Joshua was tired.) The technical term for Joshua's foot problem is reactive grandulation. They now believe it is caused from the nail growing back not from his working from the move.

Joshua is to have general anesthesia on Monday at 8:30 a.m. They will remove the whole nail from both toes. Last time they did just the sides of them. There is a 10 percent chance of them growing back. They have the plastic surgeon there just in case he needs a skin graft.
Joshua is up to one whole methadone pill a day. It just hurts him to sit in school for such long periods of time. The extra half of pill helps. He really needs to get off the methadone though. I think he being able to drive would help him a whole lot instead of Mom driving him around. Which I really do not mind because I get to be with him. It just would be good for him to help move him to adulthood and less dependant on us.

Thankful Joshua is alive - Joy on this journey,
God's love and ours,

LesLie, Les, Rebecca, Sam. and Joshua our Champion Hero

Monday, January 2, 2006 7:23 PM CST

Hi All,

We went to the foot doctor and Joshua's toe was not infected; instead it has an overgrowth of dermal tissue.
It looked like hot red raspberries growing on his toes. We were told it was caused by continual rubbing of the sock and shoe on the tender area. To protect itself the skin went wildly overboard in producing new cells. This all came about because of Joshua helping with the move going up and downstairs etc.

Our foot doctor called his partner in to take a look and advise on what to do. He also called in a plastic surgeon to advise on how to remove it. Joshua had to wash and care for it for two weeks and wear special open toe shoes, less rubbing on the toe. If it is not better in two weeks they will put him 'under' to remove it and the toenail for good. Then.. we should be done with toe problems.

Joshua is still on the methadone and takes an oxycodone about one time a week. He hurts using the stairs. His mornings are still very hard but after two hours he feels pretty good.

Tuesday we go to the clinic and to the foot doctor.

We are starting to get settled in. I am working a lot at the moment 37 hours this week plus my nursing home job.
I don't have a lot of time to organize. It is good to get the hours in as long as Joshua is doing well and doesn't 'need' me.

Christmas and New Years flew by for me especially working. I have found out people who work retail have no 'life' of their own it is a taxing job. I am sure it is like that for other careers. Working has opened my eyes to that fact.

We are happy to be in Franklin. The boys are not missing there old home as much that is good, getting their beds set up helped a lot. Now their bedrooms feels like home again.

It is nice to be back writing.
Happy New Year to you all!

Continual joy on this journey,
God Bless and Love LesLie,Les, Rebecca, Sam and Joshua Our Champion Warrior

Monday, December 19, 2005 5:57 PM CST

Hi All,
Today is exactly 3 years to the day that Joshua was diagnosed with the leukemia. We could have never imagined what the next three years were going to bring us before that Dec. 19th of 2002. I can surely tell you that we couldn't have traveled this journey without the faithful prayers from each and everyone of you. Thank you.

It has been extremely busy as you all can imagine.
Our new address is, 248 Scotsman Lane
Franklin, Tennessee
37064

I am at Les' work now; I will write more when we get hooked up at home.

We were extremely proud of all our kids, they all worked hard. Joshua is paying the piper for the continuous stair
climbing and box moving. He had a half of an oxycodone plus the 2.5 mg. methadone each day during the moving. I am sure you guessed it, he was unable to take the driving test on Dec. 13th.

Being without the methadone for a week was difficult for Joshua. It seems with the Lyrcia he needs a small amount of methadone for the pain. That means no driving until he gets off. It would be considered a DUI if the police ever did a blood test.

Joshua's toe looks infected so we are off to the foot doctor
tomorrow, Tuesday.

Friday at 8:00 a.m. is the MRI.

Love and blessings,
Thanks for checking in on this journey,
LesLie, Les, Rebecca, Sam. and Joshua, our Champion Warrior

Thursday, December 8, 2005 10:47 PM CST

Hi All,

Here is a quick run down of Tuesday. Joshua past the reflex test with flying colors. He was given given one-half second to go from gas pedal to brake.
The eye test with glasses on he did ok . He had a problem with using both eyes horizontally, almost failed that test. They have a name for that situation. I misplaced my paper on it so when I find it I will let you know the technical name for the problem.

Joshua is hurting without the methadone. Dr. Frangoul gave him Celebrex to try on Tuesday. He must drink lots of water because it can hurt his kidneys.
We are excited for Joshua because he is now 140 lbs. This is awesome and it is a natural weight gain.

Today, Thursday, Joshua, let me know the Celebrex was NOT working and making him sleepy to boot. He was hurting all over. After discussion with Dr.Frangoul it was decided to let Joshua have one- half of an oxycodone. On tomorrow he will start one-half methadone a day. We are all disappointed that we are back to square one. Joshua felt best with the Lyrica and the one-half methadone a day. So now what to do with the driving? The Lord is going to have to take care of this I can not dwell on it.

Dr. Frangoul is going to set up a MRI for Joshua's spine. They are thinking there might be minute cracks in his spine. Because of all the steroids and radiation he has had this could end up being the reason for the pain. This pain is not normal and they are looking for the root cause.

We move this weekend, not sure when I will be writing next.
Joy in my Savior and this journey,

Blessing and love,
LesLie, Les ,Rebecca, Sam, and Joshua, our Champion Warrior

Sunday, December 4, 2005 6:00 PM CST

Hi All,

Joshua has had a couple of hurting days. His body liked being on methadone. When I say that I mean the neuropathy did not act up. He was not hurting on the methodone and felt good all over.
I told him his body has to try to work by itself. It is difficult after having three years of drugs to help his body work. Hopefully time will help the body adjust. We will see what Dr. Frangoul has to say on Tuesday.

Joshua is having a good nap now hopefully it will revive him and give him some natural energy.

Enjoying the Christmas season hoping you all are too.
Joy on the journey,
God bless and love,
LesLie and the family

Thursday, December 1, 2005 8:18 PM CST

Hi All,

Joshua continues to do well most of the time.
Some occasional nausea and body ache other than that he feels great.

Tonight is a party night because Joshua took his last methadone pill. After tonight he is narcotic free, just nineteen days short of three years- WOW!

Joshua has a routine clinic visit this coming Tuesday. He is also going to take the first part of the Vanderbilt driving test. They evaulate him on all sorts of issues. The one I know for sure is that they test his short memory. Joshua continues to have a problem with remembering on the day to day level.
I am sure I will be able to tell you all what this entails after Tuesday.

Other than that we continue to make boxes and pack. The count down is arriving for the move.

God bless you all during this Christmas Season
Joy on this journey,
LesLie

Friday, November 25, 2005 9:23 PM CST

Hi All,

We had a wonderful Thanksgiving at some of our friends home. Then we came back to our home for a campfire. We enjoyed the s'mores and fire. The wind was whipping around us so Joshua suprised us and brought us some blankets. Joshua told me during the campfire how he was enjoying himself.
Joshua is down to one-half methodone at night. Soon he will be off of it. God is showering us with His blessings. We thank God for the new wonder drug, Lyrica, it is such a blessing to Joshua.
Joshua only had two more times feeling dizzy and out of it in the morning and that has been a couple of days ago. He still needs some naps here and there. Joshua occasionally has bouts with nausea and stomach problems, other than that he is doing quite well.( I wrote earlier that Joshua was having no problems physically then tonight Joshua told me he had nausea and stomach problems every now and then.) So, I erased that bit of information to write the up to the minute news. Never a dull moment with Joshua.

I am so very thankful this Thanksgiving:

health for Joshua

family and friends who have prayed for us - you have been a blessing!

our home sold

my new job

As I think of this wonderful Thanksgiving for us, I remember many of the families we know that lost a beloved child. I especially think of Connor and Justin and Whitney. My heart continually thinks of them and their families. I have NO complaints.

Joshua's next doctor appointment is December 6th. I will write before then though.

We will be BUSY packing for the next couple of weeks. Right now it looks like our closing date is December 12th.

We are just zipping along now - Praise the Lord

His joy on thie journey,
Gods blessings to you all,
LesLie,Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Saturday, November 19, 2005 5:40 PM CST

Hi All,

Yesterday Joshua had some of the methadone symptoms.
I had him take off from school since it wouldn't do much good to go.(Read yesterday's journal if you did not get a chance.)

Today he is back to feeling chipper again.
The whole family walked around the 1.1 mile block this afternoon.
Joshua did not use a walking stick and was in the lead except for when we were 'climbing the hills'.

Joshua is outside helping his dad with cleaning the garage. BECAUSE... DRUM ROLL PLEASE.... WE SOLD OUR HOME AND WILL BE MOVING TO FRANKIN ON DECEMBER 12TH.!!

We are excited to move. Yet a little bittersweet because we built this dream home of our and have been here for ten years. It also is the only home Sam knows. We have had some wonderful times here but there will be more to come in the new home.
I also have started a part time job at Dillards in the Cool Springs Mall. If anyone is in Dillards come see me in the 'ladies better department. (Ralph Lauren and the like).
I am feeling like once again we are a 'typical family' and it feels good.

All is well on the Nienow front and thanking God for it.

Joy on this journey,
Be blest,
LesLie, Les, Rebecca,Sam, and Joshua, Our Champion Warrior

Friday, November 18, 2005 9:44 AM CST

Hi All,

I had put up a journal this past Wednesday and somehow I deleted it so here is what I remember from it.

Our doctor visit went very well. Dr. Frangoul could not believe how alert Joshua was and asked our pharmacist,
"Now what has his mother been giving him?" Whatever it is we should sprinkle it on all our kids." She told him only vitimin C, 500mg.in the morning and 500mg.at night.

Since Joshua is doing so well we are going to start the methadone taper. This is slowly getting off the drug, hopefully with the least amount of symptoms. The symptoms are nausea, vomiting, diarrhea, headaches, and the like. A nurse friend of mine said those getting off the drug can become hateful and have problems comprehending things.Pray against all of those symptoms please.

When Joshua gets off the methadone I will take him to Vanderbilt for a reflex driving test. This test determines whether he has adequate reflexes to drive safely.If he passes, and he will, Thank- you, Lord, he will be off and driving. I am so happy for him. I know he and Sam miss the driving to school by themselves and going places together.

Joshua read a little booklet about a woman who was healed of liver cancer without chemo. She believed God healed her. Now because of this she worked the best she could in keeping up with normal life. It was difficult and miserable at times but she trudged through this situation reciting healing verses to herself and had her family do the same. (She is not advocating this for anyone she just believes this is what God told her to do.) It has been over twenty years and she is still going strong.

Joshua is working on doing more for himself now instead of asking us (mostly his kind brother Sam) to do things for him. He is also working on saying healing Bible verses to himself when he is too tired and the road seems rough. I know his favorite one is: "By his stripes I am healed."
Believing by faith when he does not feel like anything is happening is what faith is all about.

God bless you all,
Joy on this journey.

LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Friday, November 11, 2005 9:21 PM CST

Hi All,
All in all Joshua has had a very good week.
This past Monday, Joshua and I walked around the short neighborhood block it is 1.1 miles long. We took turns pushing our math tutor's baby in a stroller or using our walking stick.
This is EXCITING news because it is the first time Joshua has done it since prior cancer! He said it was a little hard to finish but he wanted to push himself. I am proud of our Champion Warrior.

He is feeling quite good with just the methadone and thinks he is up to driving the car. The hitch is methadone is a C2 the same as oxycodone. (I just found out that little piece of information) The doctors use methadone to get their patients off off 'harder' drugs.
I am just suprised it is the same C level as oxycodone.
This Tuesday is a doctor visit we will see if Joshua can start the methadone taper and get off of this drug.

Rejoice with us-we are moving forward.
Joy on this journey,
Blessing and love,

LesLie, Les,Rebecca, Sam, and Joshua, Our Champion Warrior

Friday, November 11, 2005 9:21 PM CST

Hi All,
All in all Joshua has had a very good week..
This past Monday, Joshua and I walked around the short neighborhood block which is 1.1 miles long. We took turns pushing our math tutor's baby in a stroller or using our walking stick.
This is EXCITING news because it is the first time Joshua has done it since prior to cancer! He said it was a little hard to finish but he wanted to push himself. I am proud of our Champion Warrior.

He is feeling quite good with just the methadone and thinks he is up to driving the car. The hitch is methadone is a C2 the same as oxycodone. (I just found out that little piece of information) The doctors use methadone to get their patients off off 'harder' drugs.
I am just suprised it is the same C level as oxycodone.
This Tuesday is a doctor visit we will see if Joshua can start the methadone taper and get off of this drug. Please pray with usfor this next step to full health.

Rejoice with us-we are moving forward.
Joy on this journey,
Blessing and love,

LesLie, Les,Rebecca, Sam, and Joshua, Our Champion Warrior

Sunday, November 6, 2005 6:17 PM CST

Hi All,

Joshua had a wonderful Saturday. He cleaned his room and did HOMEWORK. Can I hear a praise the Lord? A superb day today. He woke up in the morning with no complaints about his body. (that is almost a first)

He helped me out in children's church and blew up about eight balloons for birthday Sunday. He told me at one point he started to see black so he stopped that activity and started another. Smart boy I have ~:-)

Joshua stayed after church for youth band and played drums without having to wrap his fingers for protection.

Afterward Joshua helped Rebecca do some shopping at Wal-Mart and when they stopped on the way home to get some gas he quickly jumped out to fill up the car for her.

When Joshua came home he did some of Sam's chores, since Sam has been gone all weekend on a work retreat with Les.
(Sam was one of the helpers in keeping the place clean.)

Joshua said the methadone is working. This means we may be off the oxycodone.

It looks like we have jumped a couple of steps forward! I pray it continues.

God's blessing and love to you all,

Joy on this journey,

LesLie

Friday, November 4, 2005 7:58 PM CST

Hi All,

The last two days Joshua has not had a headache. Tonight he has a little one and we are just praying that one away.

Joshua went to school today, a Bible class, which he enjoys. I think it is good for him to get back into the swing of things. It is amazing how quickly abnormal can seem normal.

Joshua had a foot appointment today to see how the nailbeds of the big toes were doing. Dr. Mac Arthur was pleasantly suprised and told us that they were doing much better than he thought they would be doing. Joshua was happy to report they weren't painful anymore. He is also back to wearing shoes instead of the 'lovely' blue sandles a 'present'from his wonderful doctor.
As long as we are talking about Joshua's feet. He told me he wears a size 15 not a 16 as I previously wrote about.

The eye appointment is now Nov.14 and Dr. Frangoul is Nov. 15. We have a little respite from doctor's offices.

God bless and His love to all of you,
Joy on this journey,
LesLie

Wednesday, November 2, 2005 4:41 PM CST

JOSHUA SHOWS NO SIGNS OF LEUKEMIA!! That is our praise report today. We are one DELIGHTED family.

Since the headaches continue we now are seeing our eye doctor. We had Joshua's eyes checked in February but we will see if anything has happened since.
The next thing will be a more in-depth doctor visit with the neurologist.

Joshua has lost some weight he is now at 131. A slow lost, like he has been having 'usually' means some GVH is acting up.. We shall see, and deal with it if it is true.

Just rejoicing on the good report today.

Joy on this journey,
Love and blessings to you all,
LesLie, Les, Rebecca, Sam and Jsohua, Our Fhampion Warrior

Tuesday, November 1, 2005 6:07 PM CST

Hi All,

Happy All Saints Day. A little of my Lutheran background coming out in me.

Well, we were at the clinic by 9:00 a.m.
in hopes of being first on the docket. It was not to be though. The sedation team was elsewhere in the building and would not be in the clinic till the first scheduled
appointment-which we weren't.

I asked for them to give Joshua fluids since he would have none for about fourteen hours. We watched Ice Age and part of a Tarzen movie while waiting for our appointed time.
I was find with everything emotionally till we went in the 'surgery' room. All of a sudden I got nervous and could not believe we were doing a spinal tap to see if there was leukemia cells in his spine. I almost started to cry, instead of thinking of the' good times' and some of the laughter we had in the hospital. I thought of all the hardships and pain Joshua went through while he was in the hospital. I just prayed, "Lord, not again, let everything be just fine." To see him on the stretcher curled up with his size 16 shoes taking up half the space made him look so vunerable and young.

The doctors and nurses just carrying on and laughing helped me somewhat lighten my thoughts. They really work on being upbeat. Sometimes I think they all take 'happy pills' before they start work . A great team of doctors and nurses at Vanderbilt.

When Joshua was on his side curled up and under the anaesthesia Dr. Frangoul started to get Joshua's back ready for the puncture, all of a sudden Joshua flipped his body over and swung his arm over towards Dr. Frangoul who was immensely suprised and wide eye by now.(This has never happened to him) They pumped Joshua with more anaesthesia and another doctor and a nurse held Joshua steady. He was fine after more anaesthesia.

Joshua came out of it well and we left in about 45 minutes. Joshua held on to me with one arm and used his cane with the other and we walked out of the hospital. He went to sleep in the car. We went to visit Les so he could give his boy a hug.

They are keeping his medicines the same right now so as not to rock the boat while Joshua is having these headaches. Joshua continues to have the headaches. Tonight it is at an eight. He puts a heating pad on his head, he said it helps.

We should know what is up with the four vials of spinal fluid in a couple of days. Besides leukemia in the spine they are looking at other things also.

Thank -you for taking this journey with us it lightens the load to know you are praying for Joshua.

God is in control so we have HIs joy on this journey,
Love and blessings,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

P.S. If you do not know how the spinal tap is done and are curious, look back on Joshua's past journals to the date of August 11,2003

Sunday, October 30, 2005 8:19 PM CST

Hi All,

Joshua still has head pain between 6 -7. I guess that means a spinal tap on Tuesday.

Joshua would like you all to pray that he can start studying again. His concentration is low. When he tries to do drafting he said his eyesight gets a little blurry. I will call the eye doctor and see about a check-up. He had one in February so we will see if anything has changed.

Other than all of this life is fine and we are enjoying the beautiful weather in Tennesee.

Joy on this journey,
His blessings on you all,
LesLie

Saturday, October 29, 2005 8:47 PM CDT

Hi All,

The headaches Joshua has been having are continuing. If his worst one was a ten, today's is a seven.
Joshua is still eating well, that is exciting.
Other than that not much news.

Joy on this journey,
God's blessings and love,
LesLie

Friday, October 28, 2005 8:45 PM CDT

Hi All,

A long clinic visit today. Cassie,one of our nurses, questioned Joshua in detail about what has been going on this past week with his body. Then Dr. Frangoul came in with Cassie and he did a manual lower strength test on Joshua's legs and feet which he believed showed a decrease of strength. This along with the continuous headaches and the unsteady feet has caused them to consider leukemia in the spine/ brain. ( We do NOT receive that report.) I will say though my heart seemed to stop for a second then I told myself we are NOT going there. I WILL trust the Lord and lean not on my imagination.

Dr. Frangoul said it would be strange to have it two years but there is a 10 percent chance of it. Part of that 10 percent is having had brain radiation one may be more susceptible to cancer in the brain. Because of that 10 percent, we had the cranial CAT scan done.

Joshua told me when they left, "I do not want to go to the hospital again." I said Joshua only 10 percent 'chance'. Joshua said, "Yes, but I have always been the one to hit the odds. ( That was true, I thought, good or bad Joshua did not seem to ever do anything status quo.) I just hugged him and told him how God loves him and nothing can separate us from the love of
God. We will praise God in all things but not for all things. I do not want fear to lead me but God, another time of growth in my trust in my God.

After the CAT scan appointment we went back upstairs for fluids. Joshua needed to move out the contrast out that they put in his body for the scan plus he was dehydrated.

GOOD NEWS was given on the CAT scan NO CANCER. Thank- you LORD for Your mercies.

If the headaches, trembling feeling and unsteady walking continue through this weekend they will do a spinal tap on Tuesday. Sometimes cancer cells hide in the spinal fluid. He had, if I remember correctly 5 leukemia cells in the spine at one time which is enough to treat with chemo. then after treatment it was gone-FOR GOOD-Amen.

I am believing all is fine. I asked Cassie why can't we just believe this is all narcotic withdrawal? She said they just have to be sure and checkout any possibility of anything else.

We were told dead stopping neurotin and starting Lyrica may not of been the best for Joshua either.

Somehow Joshua's kidneys are not working as well as they should be. His potassium and magnesium is sky high and he is showing to be dehydrated ( even though he drank 100 ounces yesterday) I guess water drinking is a cumulative everyday thing. We get to drop 6 magnesium pills - he will be down to 12 magnesium pills daily. They are thinking about putting Joshua on Floranuff. Sometimes, we are told kidneys act 'stupid' and this drug will stable the electrolytes.

If he has more heavy duty headaches we were told to treat them with extra methadone, 2.5 mg.

One more thing, Joshua weighed in at 134 lbs today. I said, "But he just weighed in at 137. Joshua told me that the digital scale on Tuesday is not accurate. Well, so much for my excitment in that area.

We left for Les' work about 3:45. When we saw Les I said, "I know, you want to hug your healthy boy." Which he gladly did. Once again we are reminded of God's faithfulness and are SO thankful to have Joshua with us. Thanks to our God and His faithfulness to the Bible verse Joshua 13:1. Joshua was old and advanced in years.

Pray with us the headaches and unsteady walking would cease and ther would be no need for Joshua to go through a spinal tap.(NOT FUN)

His joy on this journey He is taking with us.

God's blessing and love,

LesLie,Les,Rebecca,Sam,and Joshua,
Our Champion Warrior

Friday, October 28, 2005 7:35 AM CDT

Hi All,

Sam took wonderful care of Joshua yesterday. Joshua just raved about the breakfast Sam cooked for him, potatoes,eggs and toast.

Joshua had another bad headache day on Thurday. Other symptoms included were nausea, trembling and coldness and lots of sleeping. I called Vanderbilt from my work, and spoke to Becky, one of our wonderful nurses.

She told us to give Joshua another methodone. This seemed to help the headache to lessen on Thursday but it is back this morning.

We are off to the clinic today. Joshua is to get his cyclosporine level checked. I was told if the level of that medicine is off it could be causing some of these other problems.

They are also considering doing a CAT scan of the head to make sure there is nothing abnormal going on.

One great thing is Joshua is still eating through all of this, good sign to me.

I do get concerned about his schoolwork, or should I say lack thereof. It seems like a lost cause right now but I know it is not as important as getting Joshua well so he can do it.
I will write tonight. A blessed day to you all.

His joy on this journey,
Love and blessings, LesLie

Wednesday, October 26, 2005 8:03 PM CDT

Hi All,

Check out yesterday's journal if you haven't yet. This way you will understand the update.

It was slow going today in every direction. Joshua was able to sleep much of the day away. The headache has lessen considerabaly. Thank-you Lord.

Joshua was still having trembling and nausea but to a lesser degree today. When he was walking he used the cane or grabbed onto things as he went by them for stability. When he was walking downstairs he liked having his hand on my shoulder for precaution against falling.

Not a lot of eating went on today. I did push the drinking because yesterday's blood work showed he was dehydrated once again. They also want Joshua to stay off the V-fend medicine-the liver counts are up there again. Dr. Frangoul is checking to see if they can lower the dose of V-fend or try another medicine to keep fungus at bay.

Joshua is now taking methodone 5mg. 2x daily instead of 2.5 mg every eight hours. We will go from there and see how it goes.

Tomorrow I go to work and Sam will be Joshua's willing nurse. Sam is such a blessing to all of us and especially to Joshua in his times of need.

Things continue to look up-joy on this journey.

God's blessings and love,

LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Tuesday, October 25, 2005 10:38 PM CDT

Hi All,

Joshua has had an enormous headache for almost two days now. He equates it to the headache he had on his 16th
birthday. That headache was so bad the neurologists gave him caffine bolices to 'shrink' the blood vessels to lessen the pain.

I called Vanderbilt tonight because Joshua was crying from the pain he was having along with contending with waves of nausea. I was glad Dr.Ho, who knew us, called us back. He believes Joshua is going through narcotic withdrawal. When one (Joshua in this case) had been on oxycodone as long as he has been, at least one and a half years-the body is going to react when it has to give up the narcotic.

Yesterday, Joshua had a swimming feeling in his head and some trembling. Dr.Ho said all that goes along with the withdrawal symptoms. He had Joshua take a extra half of a five mg. methadone pill tonight. This should take the edge off the symptoms. He will'send' a note to Dr. Frangoul to call us tomorrow and see if we should continue the increased dosage of methodone.

Joshua said he does not crave oxycodone and is happy to see if he can get off it. To bad his body is not in agreement.

Today we saw the neurologist, Dr.'Jesus'Pina-Garza.
He is starting Joshua on the long awaited Lyrica. The technical term for the type of neuropathy Joshua has is reflex sympathic dystrophy. Lyrica is suppose to help 51 percent of the people who take it. Neurontin helps only 20 percent.
This looks like a better deal to me.

Another joy point today, Joshua is now 137 lbs. Before long he will hit the 140 mark.

It is not a lot of fun to see Joshua in such pain but I was glad there was not a bigger problem going on. It is hard for him now, but it will pass and then we will be done with the oxycodone- another step to total recovery.

Pray with us that the withdrawing time is quickly over and he can get back to the normalcy of life, like homework and teasing his brother and sister:)

Thanking God for His constant joy- where would we be without it?
God's blessings and love,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Friday, October 21, 2005 8:19 PM CDT

Hi All,

Sorry I wasn't able to write yesterday. I could not get on Joshua's page. I think something was wrong with the web server.
Good News! Joshua's liver numbers came down during his week off of the drug V-fend. Joshua was put back on the medicine this week. We do not have a doctor appointment with Dr. Frangoul for three weeks.

This coming week we go to the neurologist. I am sure Joshua will start the medicine Lyrica after the visit.

Joy on this journey,
Love and God's blessings,
LesLie and the Family ~:-)

Saturday, October 15, 2005 6:44 PM CDT

Hi All,

We had a good doctor visit yesterday. Dr. Frangoul FINALLY gave us his congratulations. We reached the two-year mark as you all know. The two- year mark means that the 'odds' of leukemia coming back are EXTREMELY LOW. Thank-you Lord!

Joshua weighed in at 135 lbs. and looks good. However, since this was the two year mark they ran some tests. They did an echo on his heart and had a breathing test done. He had had a lung X-ray in June so they accepted that as current. Joshua will get some extensive blood work done on this coming Thursday for the two-year mark when he comes back for IVIG, the immune booster, which takes about 1 and 1/2 hours.

We are working on getting off the oxycodone by switching to methadone, which is lower on the scale of controlled substances, a controlled substance is given a number considering its abuse potential. An example of a C1 (C for controlled)is an illegal substances. A C2 would be oxycodone, C3 is anabolic steroids, a C4 example is valium, and C5 is tylenol with codine and Lyrica (the new medicine that is suppose to help with neuropathy and replaces oxycodone.) I was told all of this before we knew Joshua was going on methadone so I do not know where it is on the scale.

Lyrica, we know is finally coming out because the pharmacists are receiving information about the new medicine and they are seeing advertisments for it. Soon very soon.... we should have it.

There is one thing, though that is a concern to Dr. Frangoul. Joshua's liver numbers are sky high. One number is 275 which should be less than 40, the other number is 566 and should be less than 56.

The first plan of action is taking Joshua off of V-fend, a medicine that keeps the aspergillus whicch is a fungus away. Aspergillus caused Joshua to lose the lower lobe of his left lung. (There are only two lobes on the left side, and three on the other.) Hopefully we will see the numbers return to normal.

Their alternative diagnosis is that the high numbers could be from GVH of the liver (graft verses host disease attacking the liver) then they would do a biospy to check out the liver. Let's pray it is the first diagnosis.

On a side note I forgot to tell you all during the toe surgery both of Joshua's big toe toenails popped off. Every once in a while he wants me to look, Yuck.

Thanks for keeping up with Joshua and his prayer needs.
God bless and love,
Joy on this journey.

LesLie,Les,Rebecca,Sam, and Joshua,Our Champion Warrior

Thursday, October 13, 2005 8:55 PM CDT

Hi All,

Joshua had the surgery done on Monday at 9:00 a.m. and we left for home at 3:45 p.m. They thought they could get him to sleep by a I.V. anesthetic drip, but, he would not go out and so they had to go with a light general anesthetic.

Dr. MacArthur was in to tell me when Joshua was done and how hedid. He came back in the room to check on Joshua a couple of times.
The right toe kept bleeding after surgery. The nurse had to bandaged it three times. When Joshua felt good enough to go home he stood up and the blood came through the bandage a fourth time. I called Dr. MacArthur at his office, he was able to come right over. He unwrapped Joshua's toes and soaked them and rebandaged them. The right one he put a special bandaged on to stop the bleeding and finaly we were able to go home.

Our nurse who had worked on the day surgery floor for two years had told me she had never seen Dr. MacArthur until that day. She also said to me she saw him spend more time that day in caring for Joshua, than any other doctor caring for a patient that she sees on a regular basis for the last two years! Dr. MacArthur is a caring and concerned doctor.

Joshua is in moderate pain with the surgery. His body is acting up once again and we are going to see Dr. Frangoul on Friday. He is very tired, has feelings of numbness and stomach problems.

School is out the window at this time. Not sure what we are going to do with homework and attending school.

Thankfully God is in control and I am doing fine. I am not as stressed out with driving either. Thank-you for your prayers.
We will get through all of this.

Joy on this extended journey,

LesLie Les, Rebecca, Sam, and Joshua Our Champion Warrior

Friday, October 7, 2005 6:58 AM CDT

PRAISE GOD!
TWO YEARS!

Hello All,

We have a wonderful praise report today. (as you may have already figured out) Today is the two year anniversary of Joshua'a bone marrow transplant. God has done (and continues to do) great and marvelous things.

This is a guest appearance by Les (the dad) Leslie had some corrective eye surgery yesterday, so I thought I'd give her a much needed break for her eyes.

Joshua and I went to the Blue bird cafe last night. They were having 4 of Nashville's greatest music writers performing in the round. This was a Make A Wish fund raiser. Joshua was envited to speak to the crowd and share his make a wish.

Unfortunately our schedule this morning won't allow me to share with you at this time. The boys will write this weekend.

God Bless you all,

Thank you so much for your constant prayers through the years.

Love, Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua.

Tuesday, October 4, 2005 2:30 PM CDT

Hi All.

It has been a busy week. I took Joshua to the foot doctor
this past Wednesday to remove the sides of one of the ingrown toenails. The doctor gave six shots in his toe. Six, mind you, and they did not numb his toe. Can you believe that?
After all that pain of getting the shots his doctor could not 'operate'. So, Joshua will go under full anesthesia at Maury Regional Hospital this coming Monday.

Busy with running the boys around. Will write soon.
God Bless,
Joy on this journey

Love, Leslie

Tuesday, September 27, 2005 9:25 PM CDT

Dear All,
Joshua had a doctor's appointment this past Friday. All the bloodwork came back fine. They believe he had a virus, which would knock a normal person down. It really threw him for a loop. He said he was tired on Monday and napped in the car on the way home from school today. Other than that he is doing well again. He has a great appetite and is now 134 lbs. Up two pounds from the last doctor visit.

Great News! God has answered a 'little' prayer. When Joshua had a full body radiation we were told Joshua would not grow in height anymore. He was 5' 11", he now measures in at 6'! Les even measured Joshua at home, after the doctor visit, to make sure they were right. Les came up with the 6' measurement also. Joshua is SO happy about this. We also share in his great joy.

Joshua is working hard in school and this weekend was able to catch up with most of his assignments. It is hard for him to work for long periods of time for his brain just fogs up and he can't think anymore.

With all this driving Joshua and Sam around I am wildly busy.
I think my brain is numb along with my body with all this driving. We realize that life cannot stay like this and thus we have started to look for a home in Franklin. Now that Les and Rebecca work in Franklin and the boys school and Sam's football practice and games are located there it seems that is the direction we should go.

We are praying this is the right step and that God would close the door to this decision if we are in the wrong. We have lived in our home for ten years and it is hard to leave. On the other hand, I believe it is time to start a new season for all of us.

My parents will arrive at our home tomorrow, Wednesday,
My mom will do the cookng and I will get the house ready for selling.

God bless and love,
His joy on this journey,
LesLie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Wednesday, September 21, 2005 5:10 PM CDT

Hi All,

It seems this bump in the road is a longer bump than we thought it would be. Monday, Joshua was in school for an hour. Tuesday he managed to stay for all of his classes, which is till 11:30 a.m. Wednesday, today, he stayed home, he was exhausted and had nausea and not really feeling like eating or drinking. Joshua slepted about 80 percent of the day. We tried to study biology, but he said his brain is just fogged up, to hard to concentrate. I am sure taking oxycodone is not helping.

We are to go to the doctor if this doesn't clear up by Friday. They rule out other things before putting him under and scoping him and checking for GVH.

Joshua is getting overwhelmed with school once again. He studies and studies but it is so difficute to memorize, he said. This bout of illness does not help the situation.

So, now you know how you can pray for him, we are thankful we have you all for prayer warriors.

Continuing in His joy on the journey,

God bless and in His love,
Leslie

Monday, September 19, 2005 2:09 PM CDT

Good afternoon all,

Well, we have had a little bump in the road. Joshua had some heavy duty cramping yesterday, early morning,(like when he was in the hospital). The cramping just continued through morning yesterday and he and I had to miss church. Both Rebecca and Les said to me that his face had the look of so much pain that it remined them of how he looked while in the hospital.

By 10:30 A.M. it had lessened to where he could relax and then he shared with me what he is learning in his Bible class in school.
Today, we left school early, he was just to tired to sit and he also did not bring his cushion to sit on. The seats are just too hard on his body for long periods of time. We had a quick Wal-mart run and off to home, and Joshua went right to bed for two and one-half hours.
He is up right now but has a headache. He thinks he has a little GVH acting up. The good side of that means no leukemia. So... there is my silver lining in this little cloud.

Oh, yes, Joshua is sleeping through the night and it looks like the input and output of urine has fixed itself.
Thank-you Lord.

Thanks for checking in and know we are having joy on this journey.
God bless and love,
LesLie

Saturday, September 17, 2005 10:26 AM CDT

Hi All,

We first went to see Dr. Jabs who works with kidney functions. Two of the medicines that Joshua is presently taking, cyclosporine and acyclovir, can cause kidney problems. The cyclosporine can cause narrowing of the blood vessels to the kidneys, whick makes the kidneys work harder. Motrin, cold medicines and Naproxen, which he was on recently, can also cause kidney damage. So, the best way Joshua can help himself is to drink drink drink. Dr. Frangoul wants him to drink 80 ounces a day. They don't care what it is as long as it is liquid. I am going to make a chart for us to follow his drinking.

Joshua had a extremely quick meeting with Dr. Frangoul; five minutes at most. Joshua reported to Cassie that he was taking two to three oxycodones a day.She was ok with it.

He is maintaining his weight at 132lbs. Joshua is doing well and for the most part keeping up with day to day life. He still takes some naps,and is not doing long term walking as of yet, but we all know God will finish the good work he has started in Joshua and He will be walking around the block with me one of these days.

We know a family whose daughter, Surelle, is seven and has relasped for the second time. They are waiting for a bone marrow transplant but things are tied up in paper work. Surelle has no white blood cells right now so even a cold would kill her. Pray for the paper work to be smooothed out and the transplant to go well. I have talked with her mother, Danielle, and she had said she does not know how anybody can do this without Jesus.

Joy in the journey,
God's blessing and love,

LesLie, Les, Rebeecca, Sam and Joshua our Champion Warrior

Sunday, September 11, 2005 3:15 PM CDT

Hi All,

Joshua continues to do well, (except for neuropathy), so well that I am starting to treat him like a 'normal kid'. A big step, but I am glad and ready for it to happen.

This Tuesday we see Dr. Frangoul and the kidney specialist. An interesting side note; Rebecca went to Minnosota last weekend and sat next to a childrens kidney specialist who works at Vanderbilt. Wouldn't that be interesting if he turns out to be Joshua's doctor?

As you know, Joshua's problems with neuropathy are still plaguing him. On some days he takes three oxycodone a day, not good. I really do not want to be with him when he tells that to Dr. Frangoul. (Before, when the pain was not so bad he was taking 1, one day and two the next.) Yet, Joshua said if something else works he would use it.He said, sometimes just punching his legs feels good.

Today at church, his legs must have been doing better because he bounced out of the chair like a normal kid. I noticed it and so did my friend Vickie Pugh. It was fun for us to see.

You can hear from this letter he has good days and not so good days with this last hurdle. Here is to praying that good days take over the bad.

God bless you all,
Joy in this journey,
Love,
LesLie, Les, Rebecca, Sam and Joshua our Champion Warrior

Saturday, September 3, 2005 7:00 PM CDT

Hi All,

Joshua continues to do well, except for the neuropathy.
the new medicine works for about 15 minutes, then the pain returns. Oh well, back to the drawing board, as'they' say.

Joshua is going to a kidney specialist in a couple of weeks, we do not have a date yet. Dr. Frangoul is concerned for Joshua's kidneys because his output at night GREATLY exceeds his input. It seems like there is always something... I am believing there is nothing wrong with Joshua's kidneys and that is where I stand.

Joshua and Les were able to go the the Titans vs Packers game in Nashville. This was made possible by Joshua's humanities teacher and his wife, Dr.& Mrs. George Grant. It was SO thoughtful of them to think of Joshua.

We continue to drive Joshua and Sam to school. Les and Rebecca take Joshua and Sam in the morning. I pick them up after school. Then I drop Joshua off at home and take Sam back to Franklin for football practice. When I need to I get Les at work then we go back to get Sam. Sometimes, my body feels numb with all this driving. Hey, but my son is breathing and we are blest to be able to do all this running around. I know many parents who would love to do it but can't. I continue to count my blessings.

Right now Joshua and Sam are outside playing football. Joshua put on Sam's shoulders pads. I know Joshua wants to play football next year at school, but for now this is the closest he can get to the real thing.

Thanks for checking in on the Nienow homefront.
As always may God bless you and love from us,
Joy on the journey,
LesLie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Saturday, August 27, 2005 1:17 PM CDT

Hi All,
We have finished our first week of school. Joshua had kept up with everything till Friday, when we had his doctor appointment. We got there by 10:00 a.m. and did not leave till 1:00ish.

His weight is stable at 132 lbs. He has some GVH on his arms and hands. We were told he needs to put on sunscreen every hour he is outside. When Joshua is in the car he is to put sunscreen on too. Yes, it comes through the glass. We thought when he is off his medicines he could lessen up on the sunscreen but our nurse, Cassie, had told us because Joshua had a full body radiation he is at much higher risk for skin cancer.

Joshua is still on the oxycodone. Dr.Frangoul said he is NOT to be driving while on it. We thought if it was a prescription it was o.k.. Well,is is not o.k., so, I will be driving them to school, etc.

Dr. Frangoul gave us another medicine, Naproxen, to try instead. Would you pray with us this works and Joshua does not need the narcotic to get pain relief from the neuropathy.

I think things are going fine otherwise.
Joy on this journey and God bless,
Love, LesLie

Friday, August 19, 2005 9:20 PM CDT

Hi All,

Camp was a success for all of us. Sam was able to meet all of his male classmates. I asked him if he met any of the girls in his class and he said "No", and that was the end of the subject. I was basically with the same group of ladies as last year, all of us hard workers, yet we still found time for fun. It was interesting and we all did a variety of jobs in the kitchen.

Joshua has truly gained strength since last year. Last year he was driving to every activity instead of walking the incline walks; this year he WALKED all the time! He did use the cane/or my walking stick at times. (Next year it is NO cane.) Joshua enjoyed swimming and jumped off the high dive numerous times. He ate well and when he got home said he weighed in at 136. He pushed himself for the four days and was happy to get a short nap in when he got home.

Today is Joshua's 18th birthday. What a blessed birthday for him to be out and about and on his way to total health.

If you want drop him a note in his guestbook he would love it!

God's Blessings and love,
Relaxing on this journey,
LesLie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Friday, August 12, 2005 9:08 PM CDT

Hi All,

Joshua is having a good week. Yesterday, Joshua ate three eggs and had more pancakes than brother Sam or friend Sam. In general he has been eating VERY well. He said that the scale showed him at 136.

Next week we go to school camp. This will be brother Sam's first year at school and at the camp. I will go as a kitchen mom. Last year it was work but a lot of fun.

School starts on the 23rd, Joshua will be going everyday. We all need to pray for strength for him, for he has never gone every day to school.

Joshua has started to have some swelling in the right leg. I have no idea where it is coming from, Maybe it is because he has been more active than ever.

We are sailing along and it feels good.
Thanking God for respites on this journey,

Love, Leslie

Saturday, August 6, 2005 9:29 AM CDT

Hi All,

Our clinic visit on Wednesday went well. The fluids took about two hours. The clinc was not busy so I was able to sleep on a procedure chair next to Joshua for awhile.
They have lowered the cyclosporine medicine 25mg. This medicine is to keep the 'graft vs host' disease at bay This is always a good sign for when we can get off this medicine all the rest come tumbling down.

The x-ray of Joshua's left lung is showing signs of improvement.

More blood work was done and it showed the potassium level going down.:)

Joshua turns 18 on August 19th, I can't believe it! Joshua had a 'birthday party' sleepover in our tent in the backyard last night. Five of his friends were there. They had a good time. I always enjoy seeing Joshua carefree.

Joy on this Journey,
God Bless,
Love,
LesLie, Les, Rebecca, Sam, Joshua, Our champion warrior

Tuesday, August 2, 2005 8:46 PM CDT

Hi All,

The big news of the day is an EIGHT pound gain by Joshua in the past three weeks! He is now weighing in at 130. I believe I incorrectly reported his weight from the last clinic visit at 124, it should have been 122.

Dr. Moore, our lung doctor, saw Joshua at the cancer clinic today instead of his office. In doing that, we did not have to pay for an office visit. (Wasn't that kind of him?)
He is glad Joshua is doing so much better. The last time he was not happy with how Joshua looked or how his breathing sounded. Joshua looked and sounded (breathing wise) much better today. He is not coughing up any blood,that always is a good thing.

The VQ scan, which was done on 7/15, showed no difference from the last one of 9/16/03. Which as stated, is a near complete absence of ventilation and perfusion (blood flow) of the left lung. The difference is the right lung has the perfusion of 78 percent and the left lung has it at 22 percent

Being that both of Dr. Frangoul's nurses were gone, he had the honor of calling our home phone. He told us Joshua's blood chemistries are way off. His cyclosporine level is sky high and Joshua is not to take any cyclocporine tonight or in the morning. The magnesium is low, now we have to go back to 6 pills three times a day up from 5 pills three times a day. His potassium is very high also - no bananas. The last thing is he is dehydrated. We GET to go back to clinic tomorrow and get two hours of fluids and have them check his blood work again to see if there is any change from the day before.

With the magnesium being low Joshua had a problem with his legs today, they were not working. His grip was very poor also. Dr. Grangoul commented , "Is that all you can squeeze?" This all was happening as he was getting an infusion of IVIG (The immune booster IV). While receiving the IVIG Joshua was feeling funny so they gave him Benadryl. Well, that put him to sleep. I had to let him sleep a half of an hour after the infusion was complete and then I woke him and gave him some candy to get him more awake for the breathing test. We set off in a wheelchair to get a chest x-ray. This was to make sure the left lung was clean of all infecton.

Lastly we set off to the lung clinic for the breathing test. The breathing test today showed a slight raise in Joshua's air volume. I do not know if it is enough to warrant doing more dilation surgery. Especially after all the problems that happened after it.

Oh, yes, we were told he need to stay out of the sun because Joshua has a GVH rash on his hands. This rash comes when one is in the sun.

All is well with our souls and we have His joy on this journey.

Love,
LesLie,Les,Rebecca,Sam,and Joshua, our Champion Warrior

Thursday, July 28, 2005 8:53 AM CDT

Hi All,

Joshua is housesitting with his friend Sam this week. You will have to wait till next week for the update.

Joshua is maintaining his weight at 128 pounds. He had some excitement for a split second when he stood on our scale and it read 140. As he stepped off the scale he saw that it was a plus twelve pounds. (When I was cleaning the bathroom I must have jarred the scale and numbers changed.)

We still are on a upswing. Joshua is eating and all in all is feeling pretty well. The other day, he and friend Sam came over for homemade c.c. cookies.

The next doctor appointment is this next Tuesday.

Relaxing on this journey,
In His love,

LesLie

Friday, July 22, 2005 2:37 PM CDT

Hi All,
Joshua just went to his school's Junior/Senior Retreat. It was at Fall Creek Falls, a park about one hour and thirty minutes away from us. He did GREAT ! It was good to see him so happy and smiling as he met me when the group got back from the trip. He even 'hiked'! Joshua will write his story in the next couple of days. We are on the health upswing. He said he ate and ate - did not gain weight. I am glad he is eating though. The weight will come. Keep praying that the hunger pangs keep coming. Keep eating Joshua !

Sam signed up for a Teen Mania mission trip to Dallas to minister in the 'projects'. This is the first time he is alone without family and for two weeks at that. Our family ask you to keep him in your prayers for safety and for clarity in explaining the salvation message to others. THANKS.

Thanks for checking in - God bless and keep you

In His joy and love,
LesLie,Les, Rebecca, Sam and Joshua,Our Champion Warrior

Friday, July 22, 2005 2:37 PM CDT

Hi All,
Joshua just went to his school's Junior/Senior Retreat. It was at Fall Creek Falls a park about one hour and thirty minutes away from us. He did GREAT ! It was good to see him so happy and smiling as he met me when the group got back from the trip. He even 'hike'! Joshua will write his story in the next couple of days. We are on the health upswing. He said he ate and ate - did not gain weight. I am glad he is eating though. The weight will come. Keep praying that the hunger pangs keep coming. Keep eating Joshua !
Sam signed up for a Teen Mania mission trip to Dallas to minister in the 'projects'. This is the first time he is alone without family and for two weeks at that. Our family ask you to keep him in your prayers for safety and for clarity in explaining the salvation message to others. THANKS.

Thanks for checking in - God bless and keep you

In His joy and love,
LesLie,Les, Rebecca, Sam and Joshua,Our Champion Warrior

Sunday, July 17, 2005 8:00 PM CDT

Hi All,

We went to Vanderbilt this past Friday for the blood profusion test. Our room was large, airy and bright. It had a 20 gallon fish tank complete with catfish and goldfish.
The boys even had a selection of videos to pick from and watch during the whole time we were in the room.

The first test was to check the airflow to the lungs. Here Joshua had to breath in the tracer (radioactive energy) for about 4 - 5 minutes. They even had a clip on his nose to make sure no air escaped. Joshua was lying down on a raised stretcher for this procedure.

The next test Joshua had his hands above his head while lying down. With this blood profusion test, the tech injected a 'tracer' radioactive energy into his blood and followed the movement with the aid of the two gamma cameras, (24 inches by 18 inches) as they smoothly moved up and down and back and forth. The gamma cameras follow the tracer though Joshua's body. This tracer was checking for any blood clots which could be hampering Joshua's breathing.This procedure lasted at least 45 minutes.

When we were done Joshua was "starving". We went to the Taco Bell at the hospital. An hour later we met up with Les at his work and he took the boys to McDonalds. Joshua ate a lot there and then we also had homemade tacos at home that night which Joshua ate. He had a good eating day. Yet, the kicker was the next day it showed up on the scale that he lost a pound! Sometimes, I just want to throw up my hands. I wonder what does it take? Over all on a day to day schedule Joshua is eating fairly well. Our doctor wants us to get him 'Boost' to add to the calorie count.

Joshua had some cramping in the stomach, at one point he thought it felt like Crohn's. Not a good feeling. Pray that was a huge fluke. The neuropathy is acting up. We are trying a new treatment for it. I will write more on that in the next journal.
God's blessings and love,
Working on resting in Him on this journey,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior.

Tuesday, July 12, 2005 9:59 PM CDT

Hello All,

Finally some new pictures! Check them out! Joshua figured out how to get them up. I am proud of him.

Well, Joshua gained one pound - Yippee! Dr. Frangoul wants him to gain twenty pounds.

We went to Dr. Moore, Joshua's lung doctor, first thing today. He told us the reason Dr. Morgan was able to go down Joshua's bronchial tube is because he had a rigid metal scope. When Dr. Moore did the 'surgery' he used a plastic, fiber optic scope which buckles very easily under resistance.
Dr. Moore told me we have cartilage in the entryway airway of our bronchial tubes to hold them open. Because of the fungus, (aspergillus), Joshua's left bronchial tube cartilage had been destroyed, leaving him with a weak opening to the lung. Between that and the scar tissue, it is hard going for him to get a good breath and to have normal use of the left lung.

This Friday they are doing a VQ test on Joshua. this is done in the nucular medicine department. VQ profusion means ventilate profusion. (I was told it is an old medical term}. They check the blood flow to all parts of the lung. He had this test on September 16-2003 prior to transplant.

Since the surgery Joshua has been coughing up blood clots and yesterday he coughed up dark liquid blood which was scary. We called the doctor and they were o.k. with it as long as it was not red blood and not a continuous thing.
Well, Joshua had an x-ray and they found an infection in the lower left lung. The thought is the rigid scope may have 'done something'. The other surgeries are off for now, until we know they were of help.

Joshua did a pulmonary function test. It checks out how much oxygen his lungs can hold. He went up to 70. (Normal is between 80 to past 100) I believe his last test was between 59 and 66. I was excited, but Dr. Moore was not thrilled about it.

We see these doctors again in two weeks. I asked Dr. Frangoul how Joshua was doing for being out of transplant almost two years. He said Joshua should be coming in once a month by now. He also said he was very pleased with Joshua. Yes, Joshua has things that come up like the lungs and weight loss but nothing life threatening. Joshua's main enemy now would be leukemia coming back. After two years out the chances of leukemia coming back drops dramatically. We will be there October 8th, 2005! Today, Dr. Frangoul while sitting next to Joshua gave him a side-hug. Joshua loved it, and this mom was delighted to see this expression of happiness from our doctor. What a great way to end our doctor visit.

Thanking God for seeing us through this journey.

Love and Blessings,
LesLie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Monday, July 11, 2005 10:45 AM CDT

Hi All,

Joshua and I are enjoying this Tennesse rain. I know my flowers are happy getting a little break from the scorching sun.

Last week around Wednesday, Joshua's appetite started to lessen and thus he has dropped another pound. He just feels all round yucky.

He did have a bright spot of being able to go to a laser tag game room with some school friends.
He pushed himself for the first game of running around. the second game for most of it he found a good place to sit at 'shoot' people as they came by. When he got up to walk he felt his legs were not being very cooperative in moving and he almost fell. After the tag they went to CiCi's pizzza.I then picked him up and drove him home. I was glad he could be with some friends and do something normal.

Sunday his appetite picked up a bit. Les took him out to eat for lunch and brought him some food for supper. We are back to just trying to get calories in him, whatever they look like at this point. My dad said I should make him some oatmeal chocolate chip cookies. That sounds yummy to me.

Tomorrow we have a clinic appointment- I will let you all know what happpens.

Continuing in His grace on this journey,
Blessing and Love
LesLie,Les, Rebecca, Sam and Joshua, our Champion Warrior

Wednesday, July 6, 2005 9:34 PM CDT

Hi All,

Joshua has been doing well since Sunday afternoon. We thank all of you for your prayers - God answered them.

We had a clinic visit this past Tuesday. Joshua with the help of a one pound sweater weighed in at 126.

Since Joshua is back eating again they will leave the prednisone alone. Our doctor and nurses agree with me that Joshua had a GVH flare-up which showed as low-grade fever, nausea, no desire to eat, etc. When they increased the medicine, cyclosporine the GVH calmed down. I am not thrilled that Joshua is on the same dosage of cyclosporine as he was right after transplant. It helps him go through the day somewhat normal though and that I am thankful for.

At clinic, I found out Nikki, a 17 year old girl with bone cancer who had roomed next to Joshua is now in hospice care.

There is also a 17 year old boy out of transplant four months and they already see some leukemia cells coming back. They took him off of cyclosporine to get GVH to rise up and fight leukemia but no GVH.

Knowing this has put Joshua's problems in perspective for me. Lord, we pray your healing on these two teenagers.

Love you all,
LesLie, Les, Rebecca, Sam and Joshua our Champion Warrior

Sunday, July 3, 2005 9:46 PM CDT

Hi All,

We arrived home at 7:00 P.M. Saturday. Joshua had a slow night and morning. He was not to keen on eating and was in a lot of neuropathy pain.

Joshua weighed in at 125 with clothes this morning. He has lost ten pounds in two weeks. This morning before church he just came into my arms and had a little cry. This of course crushes my spirit which caused me to have a couple of good crying times myself this morning.

We sang a great song at church today, "Forever God is Faithful" The lyrics are: "Forever God is faithful, forever God is strong, forever God is with us, forever, and ever." I needed to be reminded about God's faithfulness. After the sermon, people surrounded us with prayer. We are so blessed.

God is incredibly faithful. Joshua ate a good lunch and supper and felt good the whole time. May the Lord be praised.

Leaning on His strength and joy on this journey.

God's blessings and love,
LesLie

Saturday, July 2, 2005 1:58 PM CDT

Hi All,

Joshua's cyclosporine level was low so we have to increased it by 25mg in the morning and 25 mg. at night.

We have to wait till 5:00 P.M. to leave. We are still waiting on the blood cultures. The cultures will tell us if Joshua has an infection. I do not think he has one.
Right now Joshua has a huge headache. He did get himself to sleep then had to wake up for a temperature check. Joshua had forgotton about all the poking and prodding and remarked to me that a person can only get well at home.

I was reading about Noah when he was in the midst of the flood and the Bible said, " and God remembered Noah." I asked God to remember Joshua.

Thanks for checking on our journey.
God's blessings and love- LesLie

Friday, July 1, 2005 8:30 PM CDT

Hi All,

Joshua said he feels better than earlier in the day. I like that!
Joshua had two visitors, Sam Carlson and Mike Pfieffer.
Les and Rebecca were here also, we had some good laughs together.

Dr. Frangoul's nurses came in to see us. They told us if Joshua's blood cultures show no sign of infection and his cyclosporine blood levels are fine he can go home.
Being a holiday weekend there is no one here to do a endoscopy. An endoscopy is when they take a piece of his stomaach tissue and test it for GVH. We will have to go to clinic on Tuesday and most likely get a scope on Wednesday.
We were told if he has GVH they will check out the options but protocol calls for a large amount of prednisone for six to nine months then taper off.

I hate this because we will be right back where we started from. We are just on a big circle going nowhere. I am tired of it for my family's sake but more so for Joshua because he is the one who has to actually live with all of this.
So Lord, we come to you and ask for strength for Joshua and healing for his body . We know you do not take any joy in this situation. We know the Word saids, "By His stripes we are healed."We claim that verse for my son Joshua.We put him in your loving healing hands. Touch him as only you can Lord, as only you can. In Christ Jesus Name - Amen

We rejoice in all things not for all things

God bless and good night.
Love, LesLie

Friday, July 1, 2005 12:15 AM CDT

Hi All,

We got to the ER at 10:30 P.M. and in a hospital room by 1:15 A.M. We were able to have a room where joshua's favorite nurses are stationed. Nurse Adele took care of Joshua last night. He was delighted to see her.
Along with the fever, Joshua felt terrible last night.

He has no fever today, but still has a cloggy throat, some nausea, diarrhea and stomach problems. We just found out from our wonderful, charming nurse Yo, that Joshua is staying at least one more night.
I wish they would do a GVH test because I, as Dr. Mom,
believes that is what he has.

I am so glad Les and I had a wonderful get-a-way last weekend. We enjoyed campfires, fourwheeling through a trail filled forest and just had fun hanging out. Les works with a great group of people and I enjoyed getting to know them on the get- a -way.

Jesus' joy on this journey,
God's blessings and love,
Thanks for your prayers,
LesLie

Thursday, June 30, 2005 8:15 PM CDT

Hello All,

This journal is written from our home. The hospital was filled up in Joshua's area. Not one bed available. He was one unhappy camper about that, he really wanted to see his favorite nurses.
Yes, Adele, you're at the top of that group:)
The procedure, an hour long, went smoothly enough. The technical name for the procedure he received is called, ridged bronchoscopy with balloon dilation of left mainstem bronchus.
Dr. Morgan said only one spot looked too narrow. This is the one he ballooned. He also said that there's not much structural support in airway. (I will have to wait till July 12th to find out what that means) They see that the lung is ventilating well. They cannot answer why his chest hurts at times, why the chest is tight in the morning or why he breathing is so labored at times.

Joshua had a diffucult time coming out of recovery. He was in the room three and one-half hours. His whole body was hurting, he also felt nauseaous and the skin around his eyes were hurting. (After all the surgeries Joshua has had, we just found out they oil and tape his eyes shut during any procedures.) Since he could not get any relief they gave him a full dose of dilaudid, in four small doses. He became relaxed and was able to fall asleep. He was deyhdrated so they pumped him up of fluids. (I know that would make Dr. Frangoul happy.)

I fed him ice chips, which took me back to the hospital days of when he could not eat. I just started to tear up thinking about all the pain Joshua has been though.

There was a young girl in bed ten feet from Joshua crying as she was coming out of her recovery and Joshua was stressed coming out of his recovery. All this pain around me was stressing me out, which made me wonder, 'How can the nurses can do their job day in and day out I say, "God bless these "angels of mercy'."

We went back to our orginal room at 4:40 and left the room at 5:40. I wheeled him up to see Nurse Adele and found out she does not come in until 11:00 P.M. this was not a good ending to a pain-filled day.

Right now Joshua has a fever of 100.2 along with a headache. Keep him in your prayers tonight.

Joy in the Lord in this journey.
God bless and love.
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Our call to the doctor - they want him to come in to emergency and plan to stay at the hospital - Let you know what is going on tomorrow .

Tuesday, June 28, 2005 9:01 PM CDT

Hi All,

Thanks for being patient with me. I actually could not get on the author part of this web and write.

Joshua did well on a general basis during the weekend.
He told me the neuropathy and headache pain is what was bothering him the most though.

On Monday he was feeling crummy and had a low grade fever and headache to boot. I called the doctor and told them; they said unless it is 100.5 they aren't 'concerned'. It has been so long since Joshua had any kind of fever I forgot about their cut off number of 105.5.

Today he is feeling good in general again. Joshua's main problem is pain control- the neuropathy is raging and his breathing is stressed at times.

I am starting to look for more remedies for the neuropathy. I am tired of seeing him in this 24/7 pain (unless he is taking oxycodone)
One night last week as he was in bed, he looked at me and asked, "When am I going to get better?" What can I say?

Thursday is the surgery day . He is hoping to be on the same floor as his nurses. If that particular floor is not full of patients he will get his wish.

I will write on Thursday when we get room.

I know God is in control and he is with us on this journey.
We do have so much to be thankful for. All I have to remember is that he is alive and breathing. Enough said!

Love and Blessings - LesLie

Thursday, June 23, 2005 9:21 PM CDT

Hi All,

Joshua is doing somewhat better. We called the doctor
just to let them know what is going on. Their concern is the headaches, if they continue they want to check them out.

We also let them know Joshua's breathing is more labored
and we need them to push to get Joshua on the sugery list. We had been waiting for four days for a call back from the surgery nurse.

Later today, low and behold, we received a call from the surgery nurse. We are on schedule for surgery at 12:00 for the bronchscopy and dilation on June 30th. (nothing like knowing people in high places)

We will stay over one night. We are hoping to be with Joshua's regular nurses of the past. The surgery nurse who we talked to (she remembered Joshua when he got his Hickman catheters in) said they try to get the kids with the nurses they want; but the hospital is full so they will see what they can do for him.

Tomorrow we have an orthodontist appointment. Remember, he got a mouth appliance to help stop the grinding of teeth on teeth. It has really helped his jaw and he has not complained about any pain in chewing.

Les and I are going away for the weekend with people he works with. This will be the first time our kids will be home alone for a whole weekend. I am sure they will do just fine. We pray God's angels over them.

Blessings and love to all of you,
Joy on this journey,

LesLie, Les, Rebecca,Sam and Joshua our Champion Warrior

Wednesday, June 22, 2005 4:17 PM CDT

Hi All,

The last couple of days have been a little tiring for Joshua. He has been having dizziness and nausea. He also has had some long staying headaches. He said he feels like he did during this past January when GVH started to show up.

Joshua and Sam had a friend over yesterday. I was hoping in that excitment the aches and pains would be gone but they continued to stay.

Joshua continues to eat, always a good sign to me. He is resting on the couch now. Hopefully that will revive him somewhat.

I am so thankful he could enjoy himself on our Texas trip.

Continuing in His joy on this journey,

God Bless -- Love, Leslie

Thursday, June 16, 2005 9:12 PM CDT

Hi All,

Our vacation was just what the doctor ordered. For me it was no cooking, housecleaning, or the biggie, NO DOCTOR APPOINTMENTS. Our job was to enjoy ourselves, and that we did. We enjoyed our time with Les's parents. I went to a tea room with Les’s mom and some nights we played cards till 11:00 P.M. In the morning I would get up and walk their sweet black dog, Libby, with Les's dad.

I enjoyed the same things at the reunion that Joshua did. The kayaking was great fun with my oldest brother Todd, who was my partner. Our goal was to tip over any one we could. We managed to tip Joshua and my brother Kim. Great Fun! Joshua did so well on the trip. We all were so happy for him.

Back to the real world - - Joshua had a doctor appointment on Tuesday.
The blood counts were good for Joshua. His weight is stable at 133.5 lbs.
He did have GVH show up on the hands. It looks like raised bumps with a little roughness to it. Joshua calls them ‘lizard hands’.

The neuropathy has worsened, in his one arm and both legs. We called the neurologist to talk about the situation. He told us, without even knowing about Joshua’s GVH situation, that when GVH flares up neuropathy can worsen. We think that is good news because when the flare-up dies down the Neuropathy will lessen.

Joshua had a CAT-scan on his chest Tuesday before the clinic appointment. The surgeon just wants to make sure that Joshua needs surgeries to open his bronchial tube. We are waiting for the call to when they want to schedule the first surgery.

We are enjoying the summer we hope you are too.
Joy on the journey,
Love and God’s blessings,
LesLie

Sunday, June 12, 2005 6:05 PM CDT

Hello friends and family,
I had a wonderful time in Texas. I was able to see both sides of my family. Everyone on my dad’s side and everyone on my mom’s side. It was a first for me to see both in one trip. Since we already live so far away from everyone, it was cool to be with my grandparents and then at supper time be with my other grandparents and family. I hope we continue to have family reunions every year. I loved the time we had at my grandparents house. It is small, but cozy. Every morning I would wake up early and spend some time with my grandparents. It was so great to see them interact with each other. Then my grandfather would walk their dog, and I would talk with my grandma. We would talk about the pills we take and having to deal with neuropathy. All sorts of things that we talked about, I would have never guessed in a million years I would have been talking about. I guess when you have cancer, it kinda changes your view on things. Now I feel I have a greater bond with my grandma. When I was at the retreat in Borne, I had the most wonderful time. My mom’s family was soooo fun. I went kayaking, horseback riding, and tubing. I even learned to play tennis a little. Every night after dinner we went to a huge campfire site. We had lots of fun there. I got sunburned on my arms and hands. The GVH rash is there and as they say I’m paying the piper for not putting on suntan lotion. It is my first time since I had my transplant in Oct ‘03. O well, live and learn I must do. The retreat was very therapeutic and I feel much stronger. I’ve noticed though I need much rest. Please pray that my lung on my left side heals up so the doctor’s will not have to do anything this summer. My toes too need prayer because I am getting ingrown on most of my toes. I still have lots of recovery to do, but with God’s help I am getting through.
God’s blessings,
Joshua

Sunday, May 29, 2005 4:09 PM CDT

Hi All,

We are having a relaxing time in Texas. Friday, I even had a three hour nap, it was wonderful. Joshua is doing fine. Joshua, along with brother Sam went golfing with
Grandpa Nienow. They took a cart for the 18 holes. Sam was Joshua's caddie, and was a fine one at that. They rested twice under a tree and watched others pass them up.
He had a great time even though it was tiring.
On Friday, Joshua and Sam headed off with their Uncle LeRoy and nine year old cousin Luke to the river. Joshua
found swimming tiring but still had an enjoyable time.
We are enjoying playing cards with Les's mom. We are having a relaxing time seeing family and just hanging out. Thanking God for good days
Joy on this journey,

Love, LesLie

Wednesday, May 25, 2005 9:13 PM CDT

Hi All,

Joshua is doing well, I have not seen him nap or use a cane this week.
Tuesday was clinic day. Joshua is holding at 133lbs. All Joshua's blood counts were fine so Dr. Frangoul said Joshua can go on the family vacation. We were told to have him slather on the sunscreen and drink LOTS of water.

Joshua had to go back on the full dosage of neurontin. Remember, he tried to get off it but his legs were hurting so much that he had to take more oxycodone. This did not make anyone happy, especially Dr. Frangoul. He wants to get to the root of this leg problem. He just does not understand why Joshua has it. I know about a month before Joshua was diagnosed with leukemia he was having problems with standing and jumping. By February, nine weeks later, he had terrible leg pain which no one could figure out the reason for. As of now, we know the nerves are not working as they should.

Joshua was able to lower the dose of magnesium pills from 18 a day to 15 a day ~:-) The IVIG went just fine and we were in and out of the clinic in three hours. The IV takes at least one and a half hours by itself.

June 14,(Flag Day) Joshua has his next clinic visit along with a chest CT scan.

We went to Murfreesboro today. Joshua got a splint retainer to take away the pressure of his teeth grinding.
As soon as the orthodontist put it in Joshua's mouth, Joshua felt relief. The orthodontist said, "It is like using a crutch for a leg.It takes the pressure off the jaw." It looks like a clear plastic mouthpiece with metal wire inside the plastic, (like the kind that football players wear).

After the orthodontist, we enjoyed ourself at a bookstore. Afterwards, for a late Mother's day present, Joshua took me out to eat. Then we lost our way BIG TIME on the expressway. I was never so happy to see Franklin and Spring Hill signs. I felt like Dorothy, I just wanted to go home.

Well, so much for 'Home Sweet Home' as Joshua, Sam and I leave for Texas tomorrow. Les and Rebecca follow us in a week. Hey, have a great night and know we love you all.
The journey is good and we are blessed,

LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Thursday, May 19, 2005 6:57 PM CDT

Hi All,

Joshua had two doctor appointments on Tuesday. It was a good thing they were in the same hospital and only two floors apart. Dr. Frangoul said, "Make an appointment next week on Tuesday before you go to Texas, we need make sure all is o.k. and then we will bless you:)."

After the nurse weighed him - (same as last week - good job Joshua), they started an I.V. of fluids on him right away, just in case he was dehydrated. The reason for the rush was, we were short on time today since we had to see Joshua's surgeon.

When they take his blood, one of the things they check for is the dehydration and it always takes at least one and one-half hour for the results. They gave him a half of a liter of fluid. He would get another half liter later if he was dehydrated so off we went to the fourth floor. I was thinking abour the saying, "Hurry up and wait," as we sat in the waiting room. As time progressed I was able to run up and find out about Joshua's blood work. He was not dehydrated but he was low on the IVIG. (Remember, it is to strengthen the immune system). We will get that IV next week Tuesday.

Back to the 4th floor - Dr. Morgan, our surgeon along with Dr. Moore, our lung doctor have decided the best way to go about opening the left bronchical tube is in a series of four surgeries. The surgeries are to be one week apart for the first two surgeries and then if they see improvment two weeks apart on the next two. (So, what did you do on your summer vacation Joshua?) Joshua's tube will be dilated slowly. After the first surgery he will spend one night at the hospital. If all goes well, and it will, he will be able to go directly home after the other surgeries.

Joshua will get a chest CT scan, next Tuesday, for the doctors to be completely sure they know what they are dealing with. Then we will start the procedures sometimes after June the 15th.

Tonight all my boys, that includes Les, went to the opening night Star Wars, on the big screen. Good for them I know they are having a great time.

Joy on this Journey,
Love,
LesLie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Saturday, May 14, 2005 10:59 PM CDT

Hi Everyone,

We had a longer day than expected at the clinic on Friday. We got there at 11:00 and left at 4:30. Joshua weighed in at a whopping 133 lbs. That was another two pound loss. Dr. Frangoul was not impressed.

We came up with a good reason, or so I thought. I told him Joshua was wearing shorts and no sweatshirt over his regular shirt. Dr. Frangoul said that reason is one of the top three reasons he is given when a child loses weight. The other two from the child is; I had a sore throat and my mom’s cooking was not that good this week. I think the last one is a doozy.

At 1:00 our nurse came in and said Joshua’s blood work is fine but his creatinine was high. This means he was dehydrated and his medicines were too concentrated in the blood stream which makes the kidneys work harder. Joshua was drinking mostly 70 oz. of water each day, though on Thursday he had only 50 oz. So, we had to stay another three hours (which neither of us was thrilled about). He had to get another needle in him, which he hates. Before the nurse poked him, Joshua reminded her he needed the ‘Freezy spray’ which she happily went and got. This spray numbs the area where the needle is going in. I am delighted to report, Joshua said, “God was with me, Mom, I did not feel a thing.” Having gone through as much pain as Joshua has, he just doesn’t want any more of it, and I for one can’t blame him.

Last week I had some very minor mouth surgery in two places. Afterwards, when the numbing medicine was gone I was in pain and was whining to myself. I decided I would nominate Joshua for ‘Sainthood’ to have gone though all the pain he did, especially when his intestines perforated in Jan. of ‘03. Les told me when that happened, Joshua was praying for God to take away the pain he was feeling even though it wasn’t as bad as the pain Jesus experienced on the cross. Boy, that prayer of our Champion Warrior still amazes me. But, I believe that is what makes him a Champion Warrior.

We get to go to two doctor appointments this coming Wednesday, May 18th. One at 12:00 to the clinic to get weighed, have blood work done, and to make sure he is not dehydrated. Our nurse promised to get us out quickly because we have a 1:00 appointment with Joshua’s surgeon to discuss the lung surgery.

The Levequin, seemed to help a lot, but there is still a problem with the coughing and breathing. This will be cleared up with the surgeries. Dr. Frangoul believes since Joshua can’t cough the ‘uck’ up it is just breeding more bacteria. Joshua has yet to have a ‘regular sickness’ and we are continually thankful for the Lord’s shield.

All in all Joshua is doing much better on all accounts. I thank you all again for your calls, snail mail cards and the guest book entries. You all have been very good to us and we appreciate it.

Blessing to you all,
Joy on this Journey,
LesLie, Les, Rebecca, Sam, and Joshua - Our Champion Warrior

Wednesday, May 11, 2005 11:40 AM CDT

Hi All,

After an at home day on Saturday, (Joshua and I missed Les and Rebecca's company picnic) and a slow Sunday morning, Joshua has perked up fantastically.

Today, Joshua said he felt like an "eager beaver", and it is almost noon. Joshua is eating three meals again (O Happy Day). He is feeling only slightly dizzy which is from the medication he takes. In fact, he feels well enough to drive to school tomorrow. Les drove Joshua this past Tuesday morning to school and I picked him up.

We are praising the Lord and thrilled to give you great report.

We have a doctor appointment on Friday. Will write on Friday or Saturday.

Joy on this journey.
God's love and blessings to you all,
LesLie, Les, Rebecca, Sam,and Joshua Our Champion
Warrior

Saturday, May 7, 2005 0:34 AM CDT

Hi Everyone,

I want to thank all of you who took time to call, write a snail mail note, or sign Joshua’s guest book. He loved it. Last night he sat on my lap as we read his guest book. Joshua had an ear to ear grin; Les calls it Joshua’s ‘Grinch’ smile. He just kept smiling and smiling away. It was great for me to see.

We went to the doctor yesterday. Joshua weighed in at 135 pounds. That is seven pounds less than at the last clinic visit three weeks ago.
This caught Dr. Frangoul by surprise and he asked Joshua what was going on. Joshua explained to him everything that happened this past week which included having a hard time breathing, feeling dizzy, enduring nausea, congestion in the head, along with headaches and his stomach hurting when he tried to eat. (Sounds like a great week to me- where can I sign up.)
Dr. Frangoul believes Joshua has an infection which stirred up the graft verses host disease. He gave Joshua a prescription for Levaquin.
I, personally, was having a problem with this. I was thinking, “Jesus, I thought you were Joshua’s shield - what is going on here.” As I talked this over with my wise husband, he said he believes Jesus is Joshua’s shield but it does not mean he will never have anything happen to him. We continue to pray Jesus’ protective hand over Joshua.

We have started Joshua on another whole food supplement which is a juice called Mangosteen. It is a juice from the tropics in Southeast Asia. The juice has now become available in America. There have been 52 studies to date world wide on this product. Some of the things it is supposed to do are lessen peripheral neuropathy and fight fatigue in transplant patients. There are many other things it is supposed to do, but Joshua is taking it right now for those two reasons mentioned above.
The surprising thing about this is Dr. Frangoul WANTS to read about it. (It also is a great product for cancer patients.) I could not believe it when he said he has time to read the pamphlet on the juice. There also is a doctor conference concerning this juice on May 11th. He may take part in this. I am surprised at his interest in a ‘health’ product. Wonders never cease.
We do have some good news concerning Joshua! Joshua does not have to take a higher dosage of prednisone. Dr. Frangoul believes once the infection is cleared up, the GVH will settle down and Joshua will start eating again. Joshua was told to drink 90 ounces of water a day. Joshua said he will drink half his body weight in ounces, which is 68. I will be happy with that. Dr. Frangoul right now is more concerned with water intake than food. We found that surprising. He wasn’t even concerned about the eating or the weight as he usually is. Most likely that is because he wants to get the infection under control.
It was a good doctor visit. Joshua still is not feeling well so please continue to keep him in your prayers.
God’s blessings and love-
Joy on this learning journey-
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Tuesday, May 3, 2005 11:42 AM CDT

Good Morning All,

My oldest brother Todd is visiting us this week, and as always we're enjoying his visit.The boys'especially have enjoyed his company. They've been playing the board game Risk, computer games, and they're even doing some school (especially history) with him.

Todd came at the perfect time for Joshua. Joshua had a horrible morning yesterday. Physically he was aching all over so much that he was using his cane all around the house. It was hard to eat and he was happy just to get a bowl of cereal down. He had heavy congestion and continually had to cough. At times it was even difficult to breathe. The boys' tutor, Mrs. Lynn, was over and he was unable to have 'class' with her because he was feeling so bad. All of this combined along with the knowledge of getting behind in algerbra, just put him on overload and he just became overwhelmingly frustrated and had a long cry.
Other things we talked about after the cry - he feels like he is not getting any better. He is SO tired of hurting all the time and he is just tired of being tired so much of the time. He is concerned Dr. Frangoul is going to put him on prednisone to get him eating again. This is something Joshua wants to avoid at all costs.
To all Joshua's faithful prayer warriors - Joshua is weary and needs your continual prayers for God's peace and hope for a good future. Pray that Joshua will take all his frustrations to God and continue to share with us what he is feeling so we know how to pray for him.

On a practical level, we'd really appreciate it if you would leave a note of encourgement to him on his guest book. Perhaps you could tell him how you can see his improvement and that he IS getting better. We know it's true, but it might help for him to hear it from all of you.

God will continue to see us though all of this - for He has given us a hope and a future in Him. Because of this hope we can say, we have His joy on this journey.

Love and God's blessings,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Saturday, April 30, 2005 8:52 PM CDT

Hello everybody,

Sorry I have taken so long to journal. I have had a couple of rough days. I have been feeling really tired lately. My stomach has been feeling nauseas and my head has been feeling dizzy. Worst of all I have not felt like eating at all and I’ve been losing weight. Please pray that I get through this difficult time and start chugging away.

Now it is time to talk about the breakfast I had with Make-A-Wish. The hotel we stayed at for the night was awesome! My whole family was able to stay that night. We had great family time. We ended up going to bed at 11:00p.m.

We all got up at 6:00a.m. and went down to the Ballroom Lobby (Rebecca had to go to work, so it was the four of us). The Make-A-Wish people were there when we got to the hallway that led to the lobby. We were able to sit at the front table in the breakfast room.
The room was really nice. The room was an upgrade from the last room I spoke at. The room looked professional. I was wearing my Packer jersey for that morning. When the time came for our family to speak I was nervous. I was looking at a lot of rich people. As I started talking I began to relax. Thank-you Mrs. Mahand for the professionalism you taught me for speaking in public.

Afterward people were coming up to me saying there was not a dry eye in the place. I think that was all on my dad’s part. My mom spoke very well too. All of us worked perfectly together as a team. While my sweet brother cheered us on from our table. One man who was there was the head of Titans security. He said I would have to see the Titan’s locker room. He also said that today was the only exception that I could wear a Packer jersey.

There were many people who came up and said I did a great job. The executive director came up to me and said I did an awesome job and asked if it was alright to use me to speak at more Make-A-Wish events. I was excited I could do something for Make-A-Wish after everything they did for me. They ended up making a total of $70,000.

Sorry this is late. Thank-you for all your prayers.
Joy on this Journey,
Joshua

Friday, April 29, 2005 2:49 PM CDT

Hi All,
Having a full day yesterday really wiped Joshua out.
He was on the couch with the heating pad on his legs waiting for the oxycodone to work to relieve the leg pain.
After eating a small meal he stayed on the couch for most of the night. This morning he was up till 11:00 A.M and went for a nap, waking up only to come downstairs to sleep on the couch. He said it really hurt his legs just to walk upstairs, and it felt like he was going backwards in this healing process.

I told Joshua, "Sometimes we take a couple steps forward only to go a little backwards. Hopefully next time you have a long day it won't hit you as hard as it has this time." Even though he did not do much just being out at Les's work without a chance to lie down and rest was very hard on him.

We as a family continue to realize this is a long journey to health and even if Joshua looks great he still is not as strong as he looks and tires easily.

This past Tuesday, Joshua hit milestone and started to run. He and I were in the Kroeger food store parking lot and we raced to the doors he did very well and beat me(I had slip-ons on - my excuse). We came home and he raced with Sam, and Sam of course beat him. Anyway, Joshua felt good and raring to go in general. We were all so happy for him that we could see some marked improvement in him.

I believe Joshua will be holding off on his writing today so bear with him he will get his journal out.

God's blessing and love,
Joy on this journey,
LesLie

Thursday, April 28, 2005 7:56 PM CDT

I am sorry for not journaling today. I had an extremely long day today. Leaving at 7:00 a.m. and coming back home at 7:00 p.m. My body is really tired and worn out, so I will journal tomorrow.
God's blessings,
Joshua

Sunday, April 24, 2005 10:21 PM CDT

Hi All,

Joshua has been doing terrific. He has been able to work steadily on his homework and attend some social functions of his school. It felt strange not having him home this past Friday and Saturday night.

We had an orthodontist appointment this past Wednesday. Joshua was getting set up for an appliance to wear at night to lessen the stress of his teeth grinding. It will take a month to get made in Racine, Wisconsin. We know exactly where that is. Anyone who shares our background knows we grew up in the vicinity of Racine.

This Wednesday Joshua, along with Les and I, will be speaking at a breakfast for a Make-A-Wish function in Nashville. They’ve requested that we be at the breakfast by 7:00 A.M. Someone was kind enough to consider the miles we have to drive, and arranged to have us stay at a nearby hotel free of charge Tuesday night. Isn’t that cool?

You’re in for a treat on Wednesday or Thursday. Joshua’s going to personally journal. He’ll be able to let you know how things went with the Make-A-Wish breakfast.

We love you all.
Much joy on this journey,
Leslie, Les, Rebecca, Sam, and our Champion Warrior Joshua.

Tuesday, April 19, 2005 9:27 AM CDT

Thank-you to all Joshua's prayer warriors,

Joshua woke up from a good two- hour nap. He had one more run to the bathroom and then had a great rest of the day. He woke up hungry, made his nacho plate and finished off with some orange sherbet. A hour later he ate supper with the family. Through the rest of the night he felt fine.

This morning Joshua had breakfast and went off to school.
Once again we thank the Lord for the praying body of Christ, that's YOU!

Joy in this journey,

LesLie,Les,Rebecca,Sam,and Joshua, our Champion Warrior

Monday, April 18, 2005 1:50 PM CDT

Hello my favorite prayer warriors,

Joshua had an active fun-filled weekend. All was looking good till Sunday night when he had no supper. This morning he had some hot chocolate and small bowl of cereal. I made him a strawberry drink which he did not finish. He is having diarrhea problems along with with a 'icky' stomach. Joshua has off and on today felt dizzy.
I asked if he wanted some ice-cream (at my dad's suggestion) but he declined. He said if we have lettuce and tomatoes he would make some nachos after a nap. Hopefully he will eat nachos when he awakens.
I am asking you to join our family in prayer that all these GVH symptoms would go away in the name of Jesus and Joshua would continue on the road to complete health.

Thanks to all of you for caring about Joshua - you bless us.
His Joy on this journey- We can do all things through Christ who strengthens us.
God Bless - LesLie

Saturday, April 16, 2005 8:42 PM CDT

Hi All,

Joshua drove us to Vanderbilt for our Friday appointment. He was having a good day right from the start. We had a great clinic visit, even though our 10:00 appointment turned into a 12:00 appointment.

Joshua did lose two and one-half pounds. He now weighs in at 142lbs. We handed to Cassie, our nurse, the history of Joshua's food consumption for one week.
When Dr. Frangoul saw Joshua had lost weight he said to keep writing down what Joshua eats, because it's important to see that he still has a normal appetite. To be underweight Joshua has to be less than 136lbs. I told Cassie that Joshua has always been slim and this is most likely his natural weight. He was 124 lbs. prior to cancer. I just didn't want them to increase the prednisone. We are happy to say they did not:)

Dr. Frangoul said Joshua can stop taking the blood pressure medicine. I just have to take his blood pressure at home and call them if the lower number is above 85.

We also asked if we could lower the neurontin. Our doctor agreed to move it from 1600mg to 1200 mg. Neurontin is for the neuropathy in the legs. If Joshua continues to feel fine, we will be able to continue with the reducing of it. YEA!!

We also are able to go three weeks before our next appointment. Isn't that great! In general, Joshua is doing very well.

He still continues to get tired easily (which we did ask about). Cassie said everyone is different. Some really never have a problem with tiredness, while some never get away from always being tired.

I saw Joshua's very first doctor, Dr. Shankar, at the clinic. She asked me how Joshua was doing, to which I told her he was just great. I told her she wouldn't believe how good he looks. When he got back from the other room, she was so happy to see him looking as good as he does. I knew with so many of the children passing away, it was good for her to see Joshua.

I am SO thankful to God that Joshua is alive and with us. Blessed be the name of the Lord. For he is worthy to be praised.

Thanking the Lord for joy on this journey.
God's peace and love to you all,
LesLie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Saturday, April 16, 2005 6:39 PM CDT

Hi All,

Sorry I am so pokey in updating. I will get the new journal up later tonight.
Thanks for being patient - LesLie

Tuesday, April 12, 2005 12:57 AM CDT

Hi All,

Joshua continues to heal. We now can see the bones in both of his feet. The left foot is still slightly puffy but we are believing that before long it will be a totally normal foot.

Our scale shows Joshua has lost two pounds. He thinks it is from losing the water weight of the left foot and leg.

Joshua had two late nights this weekend and needed two days to make up for them.

Today Joshua is having his Latin tutoring with the student from his school. This will get him ready for next school year's Latin II. I am sure it will go well.

We have another doctor appointment on Friday. As always I will report to you all what is new.

Joy on this Journey,
Love and God's blessings,
LesLie

Thursday, April 7, 2005 4:20 PM CDT

Hi All,

Joshua continues to have good days. On Wednesday he sucessfully played drums with no blisters on the fingers.

After a good day at school today, Joshua came home and wanted to take a walk. During our four block walk he said his legs felt fine but his feet were hurting. Joshua believes the neuropathy in his legs is almost gone. With this good news in hand I will ask Dr. Frangoul if we can begin to decrease the neurontin medicine.

This afternoon Joshua was chasing Sam around the house (it was delightful for me to see this normalacy) but when Joshua was done with the chase he plopped down on the couch feeling worn out and breathless. He asked Sam to massage his legs to which is kind brother Sam did so. Joshua then fell asleep for a hour. I guess school,our little walk and the chase wore him out.

Joshua said he still feels the need to sleep a lot. I know when he sleeps his body is repairng itself. I am sure this need, too, will decrese in ties as his healing proceeds.

Joy on this journey,
God bless and our love,

LesLie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Tuesday, April 5, 2005 9:08 PM CDT

Hi All,

We are having some beautiful weather here. It has been so warm I went out on a limb and planted my impatiens last week. I am told we could get frost up till April 9th. Well, It has been so lovely out, I had to throw caution to the wind and take my chances. I guess I was impatient :)
Joshua was having some problems breathing Saturday night and he was thinking about wanting to do the surgeries earlier. I told him to let us see if it continues to be a problem and if it does, we will just have to see when they can get you in for the surgeries. If the surgeries have to be done earlier, then that is what we will have to do. Today is Tuesday and so far no more 'complaints' on the breathing. That is a great sign. We would love prayer for this situation. Please pray that he has no breathing flare-ups and the surgeries won't have to take place till summer.

Joshua's eating well, something to be thankful for. I believe we are on the upswing. His fingers have healed and he will play the drums this Wednesday at the youth service. When he is home all day he is strong enough to go without long naps. When he is out and about he still needs to take them.

Last year when Joshua had his one year anniversary, I remember thinking that he would be able to start dropping the medicines and he would be off of them by April. I was sure by now he would be fine in every way. I have no idea why I thought that. Well, the journey is taking a little longer than I thought. We have only dropped one medicine and are still on eleven of them. We probably won't lower any of the cyclosporine till the end of June because we do not want to risk his getting some GVH around our June family reunion.

All in all things are smooth over at the Nienow home.
We are enjoying our time being all together.
God's blessings on you all.
Joy on this journey,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior.

Saturday, April 2, 2005 12:00 AM CST

Hi All,

This past Monday, Cassie, our nurse called and told us Dr. Frangoul wanted to see us on Friday,(so much for going two weeks without any doctor visit). He was concerned about Joshua's weight and wanted to keep a check on it. Joshua weighed in at 145lbs. which is one pound less than last week. Dr. Frangoul was o.k. with it as long as Joshua was eating and had a desire to eat. After the scope there was some thought that Joshua had bronchitis on the right side of his lung. The culture came back negative and once again I thank God for giving us Jesus as Joshua's shield.

Since our doctor visit was on April 1st,we decided to play a joke on Dr. Frangoul. Joshua put on a clown wig and covered the majority of the hair with his sweatshirt hood until just the front hair was sticking out. Dr. Frangoul had a good laugh and asked how this happened. I said it was the chemo and Joshua said that his coloring technique had gone awry.

As we were leaving the hospital we met up with Dr. Moore, the lung doctor. We had an inpromptu meeting in the hallway. The essence of the conversation is as follows- Vanderbilt Children's Hospital has one less pediatric
surgeon now. Because Joshua's problem is not an immediate need we most likely will hold off till June. Another reason for the hold off is my parents are having a family reunion
in the beginning of June and if we do the surgeries in April-May and there are complications, we will have to kiss the reunion good-bye. Besides, Joshua is still in school
and we want to keep that going.

A couple of weeks ago Joshua was smiling and I saw his long lost dimple on his right side. I had completely forgotten about it. It is so cute with his smile. His face is looking quite normal now.
We went to the bank last week and our favorite teller stopped and looked at Joshua and said, "Joshua, you look just like your mom." I am glad she did not say that when he had the prednisone face ~:-) Ha Ha.

Our next clinic visit is in two weeks. We do need to keep Joshua eating but other than that he is doing quite fine. He occasionaly has little ups and downs but nothing to cause alarm. One of the mothers at the clinic noticed Joshua was not using his cane. She was happy for him. At the clinic we are all in this together. Your trimuph is their trimuph, your loss is their loss and vice versa.

Happy Mule Day to those of you in Maury County.

God's Blessing on you all and as always thank-you for checking up on Joshua.
His joy on this journey,

LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Saturday, March 26, 2005 8:41 PM CST

Hi All,

The boys and I had an enjoyable time at the Ronald MacDonald House. Sam and I went to Cheeseburger Charlie’s and brought Joshua back an Oreo shake. He already had a cheeseburger and fries at Wendy’s before we even got to the Ron House.

We were at the hospital by 6:20A.M. Joshua was taken for his scope by 8:15. In the recovery room, I walked past Dr. Lovvorn, who had done Joshua’s first surgery, the placement of a Hickman catheter. I did not recognize him, but he recognized me and quickly questioned me as to what was up with Joshua. I told him about the bronchoscopy. Sam and I then went over to Joshua. He was a little loopy in conversation. When he was more awake, Dr. Lovvorn came over to say, ”Hi”, and check out Joshua’s curly hair. After Joshua was able to drink and get stable enough to go, he was wheeled up to the 6th floor for his clinic appointment.

The bronchoscopy showed complete blockage in the left lung. Dr. Moore could not even get the tiny probe through. Because of this, Dr. Frangoul said Joshua’s left lung is operating like someone who has cystitis fibrosis. Because no air can get in the left lung, this non-infectious crud that he has can’t truly be coughed up. I guess it just sits in the lower throat area because that is where he feels it.

Dr. Moore and Dr. Frangoul are getting with Joshua’s surgeon Dr. Morgan to see what can be done. They are considering dilation of the bronchial tube. This would mean that once a month they would do surgery on the tube, allowing it to open up very slightly each time. One cannot do this all in one operation, because it’s just too much stress for the bronchial tube. I wonder how many times Joshua will have to go through this to get it to a normal opening?

Some good things that will happen out of this: Joshua’s air output will increase; right now he is at 61 percent. He won’t get so tired going up the stairs and trying to do things in general. They also believe the tightness Joshua has been having in his lung will go away. Finally, when his legs improve, he will be able to do all sorts of things. Joshua’s desire is to be a regular kid doing normal stuff.

If you are a new reader and are wondering how this came to be, it is because of the aspergillus that infected his upper body in December of 2003. It is such a nasty fungus that causes havoc for a VERY long time as we can see.

Guess what?! Joshua gained three pounds! Dr. Frangoul was happy and said, “ I guess I had to scare you with the prednisone to get you to eat.” They were happy I wrote down all that Joshua had eaten this past week. They’re going to give it to the dietician to figure out the total calories. I find it interesting that the doctors don’t care how badly Joshua ate as long as he had lots of calories. That is the difference between a dietician and a nutritionist, who actually cares what you eat, not just how much.

Our next doctor appointment in in TWO weeks. In fact these next two weeks we have NO DOCTOR APPOINTMENTS! I am so thankful for this time off. I can work on my gardens. Spring is coming to Tennessee and I for one am ready for it.

Have a blessed Easter. I thank God for giving his son Jesus to die in my place. Jesus is my Savior and I intend to celebrate that fact this Easter. I pray you can too.

God’s blessing and love,
Continuing in His joy on this journey,

LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Saturday, March 19, 2005 3:41 PM CST

Hi All,

We went to the clinic on Friday. Dr. Frangoul was not impressed with Joshua losing one and a half pounds. Joshua is now 143lbs. Our doctor said he would give Joshua one more week to gain weight or else he would have to increase the dosage of the prednisone. Joshua eats if I tell him, if I am not there to remind him, he just does not think of it. I bought him some whole organic milk and full fat organic yogurt. I will write down what he eats to see what he is exactly eating.

Joshua is still coughing so we were sent to his lung doctor.
Joshua was given a breathing test and his results had dropped from last month’s results of a 67 to 61. Not a real big deal we were told, but it does show something may be wrong. Joshua has been scheduled for a scope of his bronchial tube on Good Friday. They want to see if the left bronchial tube is still messed up from the fungus (aspergillus). The doctors were considering stinting the tube open for better breathing, but they do not want to risk infection since his immune system is suppressed.

We were sent down for an x-ray just to make sure nothing else is going on in his lungs that they should know about before they do the scope.

After two days he is off the Keppra medicine which is good! Keppra made him so dizzy he almost fell a couple times and every time he closed his eyes his head would swim. So much for no side effects. We received another prescription of the oxycodone. He is down to 2 one day and one the next.

We went on a food fest after the doctor appointments. Joshua had a taco at Taco Bell at the childrens' hospital. We then took off to try out Jason's Deli in Franklin. Lastly, I took him to Wendy’s for some ice cream. Later that night he enjoyed some cheese dip and chips at home, complements of Les stopping at a Mexican restaurant prior to home. It was not the healthiest of eating days, but it was calories, so it was a trade off I guess.

Pray for an appetite for Joshua. We all know prednisone is NOT good for any one, much less Joshua.

Joy on this journey,
LesLie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Saturday, March 19, 2005 3:41 PM CST

Hi All,

We went to the clinic on Friday. Dr. Frangoul was not happy that Joshua lost one and a half pounds and is now 143lbs. Our doctor said he would give Joshua one more week to gain weight or else he would have to increase the dosage of the prednisone. Joshua eats if I tell him to but if I am not there to remind him, he just does not think of it. I bought him some whole organic milk and full fat organic yogurt. I will write down what he eats to see what he is exactly eating.

Joshua is still coughing so we were sent to his lung doctor.
Joshua was given a breathing test and his results had dropped from a 67 to 61 since last month. Not a real big deal we were told, but it does show something may be wrong. Joshua has been scheduled for a scope of his bronchial tube on Good Friday. They want to see if the left bronchial tube is still messed up from the fungus (aspergillus). The doctors were considering stinting the tube open for better breathing, but they do not want to risk infection since his immune system is suppressed.

We were sent down for an x-ray just to make sure nothing else is going on in his lungs that they should know about before they do the scope.

After two days he is off the Keppra medicine which is good! Keppra made him so dizzy he almost fell a couple times and every time he closed his eyes his head would swim. So much for no side effects. We received another prescription of the oxycodone. He is down to 2 one day and one the next.

We went on a food fest after the doctor appointments. Joshua had a taco at Taco Bell at the childrens' hospital. We then took off to try out Jason's Deli in Franklin. Lastly, I took him to Wendy’s for some ice cream. Later that night he enjoyed some cheese dip and chips at home, complements of Les stopping at a Mexican restaurant prior to home. It was not the healthiest of eating days, but it was calories, so it was a trade off I guess.

Pray for an appetite for Joshua. We all know prednisone is NOT good for any one, much less Joshua.

Joy on this journey,
LesLie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Wednesday, March 16, 2005 5:25 PM CST

Dear All.
We had a good doctor visit. I told our neurologist, Dr. Pina Garza, that we could now see the bones in Joshua's feet, one more than the other though. He said it would be due to the nerves healing more than the drop in the prednisone. I think that is exciting news!

He still wants Joshua to watch it in the activity department. He wants Joshua to rest when his legs start hurting. The reason is that the nerves are running through a poor nerve pattern, causing pain. Using the poor unhealthy nerve pattern reniforces that pattern and will make it harder for the nerves to heal correctly since they are in continual use.

A new medicine called Lyrica is due to be on the market soon. We were told about it last year, and we are still waiting.... It will be sold as a controlled substance, because it makes the patient feel good. Our Dr. laughed and commented how the DA for the FDA would not put it on the 'controlled substance list' if it made people feel bad.
"Are they only happy when a substance makes one feel bad?" He commented.

Joshua also was given a new medicine to try to replace the oxycodone, it is called Kepra. It has no side effects, works well with all other medicines and is not a narcotic. Let's pray it works.

Joshua's weight is being maintained. He ate pretty well last night. I invited his friend Sam over for dinner hoping it would give more of a 'party' atmosphere for Joshua and then he would eat more. I believe it helped.

He had a small breakfast today but a good lunch. Much of the time he feels full, even if he has not eaten and because of that he does not want to eat. It does help to have exactly what he wants for a meal for then he tends to eat better.

He is using the cane much less than he had been, so we know he IS getting better. These things just take time.

Joy on this Journey.
Blessings to you all,

LesLie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Tuesday, March 15, 2005 4:52 PM CST

Hi All,

Joshua has had on and off headaches for the last two days. Sometimes I think, "Hey, every one gets headaches once in a while, no big deal." Then I wonder, "Is something going on and I should report it?" I decided to keep a log and informed the Dr. Frangoul on Friday and let him decide. Right now he is napping after taking some Advil in hopes of getting rid of it.

Joshua also has become somewhat pokey in eating in these last two days. When we go to the clinic on Friday I hope he shows he has gained weight or at least is maintaining. Otherwise we may hear talk about adding more prednisone.

I may have found a tutor for Joshua in Latin. Joshua stopped taking the class at school because he was too tired to concentrated in the afternoon. A 10th grader at Joshua's school who is in his 2nd year of Latin. He comes highly recommended by one on Joshua's teachers,Mrs. Mahand. I hope it is a good match for both boys.

Tomorrow we see the neurologist, will let you all know how it went.

Thanks for checking in and praying for total healing for our Joshua.

Continuing in His Joy,
God's Love and Blessings,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Sunday, March 13, 2005 9:47 PM CST

Hi All,

We have had a wonderful week. Joshua had an enjoyable time with his grandparents from Florida and friends who came home on spring break.

Joshua's body is doing quite well except for the pain in the thigh muscle. He is taking two oxycodone a day not just the one as Dr. Frangoul would like. Joshua said the pain is like the GVH leg pain, more intense. We see the neurologist on Wednesday. I hope he can help Joshua with this problem.

I gave Joshua a hair cut. I hope to get the picture up on his page. I have the before on digtal camera the after on regular camera so I will see what we can do.

God bless and sweet dreams,
Joy on this journey
LesLie

Tuesday, March 8, 2005 10:02 AM CST

Hi All,

Joshua continues to do well. This past Friday, Les and I took Joshua to Houston's, a restaurant in Nashville. He ordered a whole rack of ribs, finished them then started to eye up Les's rack. I believe he is making up for the two weeks of not eating.

On Saturday, Les and the boys enjoyed a day of Frisbee, darts in the garage, and capped off their day with a boy's movie. Rebecca and I had a girl's day hunting for Easter clothes (to no avail). We also went to Belmont church in Nashville and saw many dear friends of ours.

Sunday, we had lovely weather. When we came home from church Joshua and Sam played outside for awhile, getting just what they needed - fresh air and exercise.

As you may remember one of Joshua's problems has been severely swollen feet. At long last we can see the bones in his size 15 feet.

We bought Joshua a massager with heat. It gives Sam a break from hand massaging Joshua's legs. Our hope is that it will help his thigh pain and then he will need only one oxycodone a day. Dr. Frangoul has reduced the dosage of the oxycodone to one pill a day. Hopefully we can work this out.

Monday, my parents arrived for a week. I am giving myself and our wonderful tutor a week off from teaching the boys. My dad is extremely profcient in math and science and my mom is off the scale in English and writing skills.

One exciting thing is that Joshua has grown 1/4 an inch! You may not think that is a big deal but we were told that because Joshua had such intense chemo along with full body radiation he WOULD NOT grow any more. Dr. Frangoul also said no insurance would pay $10,000 a month for growth hormones for a boy who is 5'11 1/4. I know Joshua really wants to be 6' so we thank God for this extra 1/4 inch. We look forward to more growth.

Joshua had a good three hour nap on Monday. It helps for Tuesday when he gets up for school.

Joy on this journey -

Love and Blessing,
LesLie

Friday, March 4, 2005 10:43 PM CST

Hi All,
Joshua had a great time with Jeff, his friend from school. Both of them along with brother Sam played light sabers outside in the dark. Joshua came in when his legs were tired. He commented to Les and me how grateful he was that Sam had Jeff to play sabers with when he (Joshua) could not play any longer. I thought that was a sweet comment.

Off to the doctor today for our 1:00 p.m. appointment.
Joshua gained 2.5 pounds and is now 144 1/2 lbs. Dr.Frangoul grilled Joshua on his eating and body functions. Joshua gave all the 'right' answers. Dr. Frangoul commented on how Joshua knew the correct answers to give. If Joshua said he was not eating or having body function problems, Dr. Frangoul would have upped the prednisone. We want to stay away from this medicine because we know the damage it can do to the body.

I asked if Joshua could get off any other medicines to which Dr. Frangoul answered, "No".

We talked about the GVH and what it is exactly. Here is the scoop. In liver, lung, kidney, etc. transplants the recipient's body will fight the newly transplanted organ. In a bone marrow transplant the donor's bone marrow attacks the recipient's body. The attack happens because the new bone marrow does not recognize where it is at and therefore wants to destroy the strange body it is in.

The older a person is, the longer it takes for the donor match to work. We know of a 2 year old baby (Barrett) who had a transplant after Joshua and is already off all her medicines. I think Joshua is young but I guess not young enough in this situation. The plan is to wait a while and try lowering the cyclosprine again. Hey, we are already down 25mg. and only 200 mg to go.

The gunk in Joshua's throat is not any better. No infection though Dr. Frangoul thinks Joshua's bronchial tubes are not open up enough on the side where the lung surgery was done. Dr. Frangoul would still like the lung doctor to take a look down there. We shall see what they end up doing.

Joshua had the IVIG today. We were suprised he needed it.
It seems like he just recently had it. Well, it never hurts to boost the immune system.

I am feeling much better, thanks for your prayers.

Joy on this journey and blessing and love to you all,

LesLie

Wednesday, March 2, 2005 8:35 PM CST

Hi All,

Joshua went to school on Tuesday after being out for about a month. They gave him a warm welcome and one teacher, Mrs.Bleymaier warmly told Joshua, "Welcome home." The faculty and students have been wonderful to us and we are blessed for Joshua to be able to be a part of the student body.
He came home feeling pretty good. After a hour though it hit him how tired he was and a nap was next on his agenda. He also was the first in the family to be in bed Tuesday night. The sleeping is one thing he still needs a lot of. Just every day life wears him out.

Today, Mrs. Lynn, our wonderful math tutor worked the boys over in algebra. Joshua said he sure learned a lot today. I am so glad we have her to help us.

Thursday, Joshua is having a friend overnight from school. I am glad he is feeling well enough for this.

Well, I am fighting a head cold. I have not had a cold since 2001. I haven't been doing much around the house. I am just one tired mom. If I work with the boys in their schoolwork and get some laundry in I consider it a good day. Everyone is helping with the meals, I guess that is good for togetherness in the kitchen. I am a blessed wife and mom.

Be blessed and joy on this journey.
LesLie,Les,Rebecca,Sam, and Joshua,our Champion Warrior

Monday, February 28, 2005 11:17 AM CST

Hi All,

We had a busy Sunday. After church we had a dinner/ hang-out time at the church with the other pastors. Rebecca and Joshua had band practice during that time. Joshua worked so long with the drums that he had a blister which opened and started to bleed a little between his fingers. I believe he needs to practice with gloves, what do you think?

No cramping or stomach problems on Sunday or today. On Sunday Joshua had a small breakfast and lunch. He told me later he made up for those mini-meals by having a big supper. Les and the boys went to see a free Chris Rice concert. Sam greatly enjoys his music. Afterwards they went out to eat at O'Charleys. Joshua had a hamburger and fries and said he was still hungry. Good for him; as long as he is gaining weight our doctor will be happy.

The boys had some great one-on-one time with their algebra tutor. Joshua at one point whooped and hollered because he answered a difficult problem correctly. Hooray for Joshua!

Joy on this Journey,
Love and Blessings ,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Saturday, February 26, 2005 7:29 PM CST

Hi All,
Another good day for Joshua. He felt good all day and even played outside with some children we were watching.
He missed lunch, but I did make him a strawberry/blueberry smoothie which he said was the best ever.
We still have to work on the eating. I will find out more about the GVH this coming Friday. I would like to see how to get rid of it.
Blessing to you,
Joy on this journey,
LesLie

Friday, February 25, 2005 10:11 PM CST

Hello Everybody,
We had a very good day at the Nienow's. Joshua had only two times of not feeling well. Some of the GVH symptoms are still with him. Tomorrow we start up once again with the enzymes and an apple a day. Hopefully that will clear up one more GVH symptom that he is still having.
Joshua had a good day homeschooling. Later, he had an afternoon nap to get ready for his friend, Sam Carlson, who came over after supper.
Thanking God for a relaxing day.
Joy on this Journey,
Blessing and Love,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Thursday, February 24, 2005 7:56 PM CST

Hi All,

Joshua had a very good day today. He didn't have any of the problems of yesterday. Now we need to continue having days like today!

Our clinic nurse called and told us Joshua definitely
has GVH. They won't put him on any predisone as of yet (which would get rid of these side effects). Joshua is now on 10mg. of prednisone every other day. We hope we don't have to add any more.

Our prayer is Joshua can eat and gain weight along with having no cramping, nausea, etc.

Wow... a short journal tonight. That is a good sign. It means we are getting on to smoother waters.

Joy on this journey,
Love and Blessings,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Wednesday, February 23, 2005 8:25 PM CST

Hi All,

Yesterday we left for Vanderbilt at 8:45 a.m. and returned home at 7:00 p.m. What a day...
We went to the clinic and Joshua had his blood drawn and an I.V. put in. (He said he trusts his regular clinic nurses more than the 'surgery nurses' to put in an I.V.) we were then off to get the lung tests.
Joshua did much better on one of the breath tests. (Which is called the spirometry test.) With this test he clips his nose and takes a deep breath, then he expels quickly all the air he can into a mouth tube. All during this time the technician is cheerleadering Joshua with, go, go, go,go,go.... The tech wants Joshua to get all the air out that he can. Even though 80 percent of your breath comes out in the first second.
On Friday this test was 55/62, On Tuesday it was 74/63. The tech asked Joshua if he thought he could get better numbers. I then chimed in, "Let's get 66 for 66 books in the Bible." Joshua agreed and away he went for another test. He got 74/63 on the next test. I teased him and asked,"What books are you leaving out Joshua?" He tried a couple more times and he finished out at at whopping 74/67! He never did so well.
Nothing like a little contest to help Joshua's numbers.
The other test came back the same as last Friday.63/59. The doctor looks at the bottom number for both tests. I was told anything between 80 - 100 percent is considered normal.
Done with the breath tests and back up to the clinic. Earlier we had seen Devin, a young boy who was in the hospital the same time as Joshua was. It was fun to see him, for we had not seen him in a very long time.
The clinic visit went smoothly, though Dr.Frangoul was NOT happy that Joshua has lost 22 pounds since December. He now weighs in at 143. Joshua was slightly dehydrated and received some I.V. fluids.
At 1:30 we left for the surgery/procedure - the 3rd floor. The 3rd floor as all the other floors is beautiful. The people who decorated the new hospital did a terrific job.
The procedure went beautifully, and there were no ulcers in the stomach or intestines. Thank-you Lord! The next test takes up to a week to see if he has a virus or GVH in the digestive area. They gave him extra anaesthesia because of his past high tolerance needs. It seems though he did not need the extra, because after 35 minutes he was still sleeping soundly. I was allowed to wake him up and it still took some time. We were in the recovery room for two hours, till after 6:00 p.m. I told Joshua if we stayed till 11:00, we could see Adele our late night hospital nurse.
His body did well on Tuesday with no cramping. He was able to eat and I thought slowly but surely we were on our way to eating again. Unfortunately today was not as good with off and on cramping, dizzyness, nausea and diarrhea. When he can, I hope to start Joshua on the enzymes and an apple a day once again.
Joshua stayed home from youth group tonight and will stay home tomorrow from school. I talked to his teachers and they said many kids were out sick and they thought Joshua needed to stay away from the school and go the following week.
Good thing we are mostly homeschooling.

Looking for a better day tomorrow. Sweet dreams to you all.
Joy on this Journey,
Blessings and Love,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Tuesday, February 22, 2005 7:21 PM CST

Hi All,
We just got home after a very long day. All in all we had a good day. I am to tired to write tonight. I will have a journal up tomorrow no later than 9:00 P.M.
Thanks for checking in -
Joy on this journey,
Leslie

Monday, February 21, 2005 8:44 PM CST

Hi All,

Joshua had a pretty good day today. He ate three mini meals with
no stomach cramping or pain. Isn’t that exciting?! Thank-you Lord
and thank you all for your prayers .
We went to the foot doctor this afternoon and he said that Joshua was healing very quickly. He is 80 percent healed and should be totally healed in one week. That is good news.
Joshua was able to do homework today and bug his brother Sam, both excellent signs of returning health.
Joshua has been having total body ache lately. He thinks it is because his body went through so much this past week. His fingertips even have a burning sensation in them. I know if he told his hospital nurses about the burning sensation they would just shake their heads at him. Right, Adele?
I need to clear something up. Many people have thought Joshua was in the hospital this past weekend. He actually was not. We went to clinic this past Friday and I might of reported we were at the hospital all day and I meant clinic. Sorry for any confusion there might have been.
This is our schedule for Tuesday -

9:30 AM Clinic for bloodwork/cyclosporian level 10:00 Lung doctor for the two breath tests
10:30 Back to clinic for appointment with Dr. Frangoul
1:30 Be at the O.R for set up for same day surgery
3:30 Endoscopy - they are going down to his
stomach and getting some tissue (biopsy)
and checking it to see if there is GVH. (This is the only sure fire way to find out if the problem is GVH.)
Our clinic nurse Cassie said, “Make sure to bring plenty of things to do, you will be here all day.”
If you are wondering how I am doing, I am doing well with this. I would say the hardest part of all this is when I see Joshua in pain or if he is crying because it hurts so badly. I pray for the day he can be up, running, and active as any other 17 year old boy. Continue to speak healing words over my son, his day of healing is coming.
Joy on this journey,
Love and blessings,
Leslie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Sunday, February 20, 2005 6:50 PM CST

Hi All,
Joshua and I stayed home from church. After everyone left for church he remarked, "I could have gone, I think." Then about two minutes later his stomach was giving him some intense cramping and he said he was glad he did not go.
I believe he is doing better with eating, though he is doing very little of it. He has had soft egg with toast, half cup of soup and a whole cup of hot chocolate. I don't think he is gaining weight on this new diet of his.
It was a sleeping day for Joshua. He had two long naps. He still gets dizzy and has some nausea but each day these symptoms lessen
I am hoping he is feeling up to some school tomorrow.
Sam,Joshua and I played some Scrabble,Joshua won. You know that made Joshua's day better.

Tomorrow I take Joshua to the foot doctor for a check-up on the toe that had a partial nail removed. It seems Joshua has more ingrown nails and he is pretty unhappy with the situation.

Would you pray with us for total healing of Joshua's body, from head to toe? Thank-you.

We thank God for all He had done for us and all He is going to do.

Joy on this journey,
Love,
LesLie, Les, Rebecca, Sam, Joshua, our Champion Warrior

P.S. Joshua just told me he is feeling better. Amen to that!

Saturday, February 19, 2005 7:30 PM CST

Hi All,
Thanks for checking in. For those of you who check every couple days you may want to check the last journal to see all that went on yesterday.

Today started out slowly. Joshua was on the couch watching T.V. to keep his mind off any pain. Just a couple
of saltine crackers caused pain in the stomach. Later he rebounded with some broth and even felt good after drinking it. A soft-boiled egg and toast along with some goat milk made up his supper. Tonight he has much less pain, which means he is doing better than last night after eating.

These last couple of days have left Joshua feeling weak and he's not sure about going to church tomorrow. He said even if he does go, it will be to sit and not to move around as an usher.
All in all Joshua is feeling much better. Thank-you for your prayers.
God bless and thank-you for traveling on this journey with us.
Love,
LesLie, Les, Rebecca, Sam, Joshua Our Champion Warrior

Friday, February 18, 2005 7:22 PM CST

Hi All,
We had a long day at the clinic today. I felt as if we were back at the pre-bone marrow transplant days, living all day at the clinic.
Joshua's blood counts came back fine, Thank-you Lord. He was a little dehydrated so Joshua was given fluid intervenously, it helped some.
His liver functions were up, meaning things are a little sluggish with the gall bladder, so we are back on Actigall.
Our doctor believes Joshua is having chronic GVH. It is called chronic because the problem happens a year out of transplant.
Joshua is back to taking cyclosporine, 100mg. 2x a daily. We were down to 75mg 2x daily. They are going to biosopy his stomach, because this is the only sure fire way to know if it is GVH. If it is, they will start him back on predisone. This would be disappointing because besides the night pill, Elavil (which he just was able stop) no other pills can be stopped till Joshua is off the cyclosporin and predisone. These two pills suppress the immune system. All the others work to fight off complications and sickness that his immune system can't fight off in its compromised state.
JESUS CONTINUES TO BE JOSHUA'S SHIELD. Joshua has not had the general types of sicknesses going around. This would include his throat. Every time they cultured it, it comes back negative.
Well, off to the lung clinc. Sam did a great job of wheeling Joshua safely there.
Joshua took two breathing tests. One test showed Joshua was using only 54 percent of his lungs verses 66 percent as was shown in December. The other test was just as bad. Dr. Moore said he believed Joshua was just too wiped out today after being at the cancer clinic for so long. He decided not to count the tests, but have them repeated on this coming Tuesday.

It was wonderful to get home. Joshua felt a little hungry, good sign to me.
I made him a soft boiled egg with toast. He was doing borderline with the meal for about an hour, but then experienced extreme pain. Les and I prayed for him. Once more we were reminded how dependent we are on God.

Unfortunately no Teen Mania conference for him. Hopefully he will be doing well enough to go to church on Sunday. It is Youth Sunday and he is heading up the ushers.
I know he really wants to be part of Youth Sunday, so would you keep him in your prayers concerning that.

Last week I was thinking of shutting down Joshua's page, because he was just sailing along and I had nothing to report. Amazing how something can happen so quickly and here I am posting everyday. As always thanks for checking and praying for Joshua.

God bless you all, continuing in His joy.

Love,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Thursday, February 17, 2005 9:19 PM CST

Hi All,

I worked today and checked on Joshua via the phone.
He did not have breakfast and had only one-half bowl of soup for lunch. When I called about two hours later, he sounded miserable and said the pain in his stomach went from a 2 to an 8. He was also dizzy and had a feeling of nausea. Thankfully as time passed, he started to feel better. The same thing happened during dinner.

I called the doctor, and we are going in for bloodwork at 10:00 with Dr. Frangoul and 1:30 with Dr. Moore the lung doctor. Hopefully, we will have some answers tomorrow.

Joshua's youth group is going to the Teen Mania's Aquire the Fire conference in Nashville. Teen Mania is a Christian organization dedicated to bringing and growing teens in Christ. (The ministry home is where Rebecca went for a year in Garden Valley, Texas.) We are hoping Joshua will be feeling well enough to enjoy this weekend with his youth group. Joshua's youth pastor is packing the church wheelchair just in case Joshua needs it.

Prayer requests are that Joshua can eat and drink with no stomach pain.

He will be able to go on less sleep for one day for this overnight conference.

Joshua can enjoy himself and get everything out of this conference God wants him to.

The toe is still painful which is causing him to take three oxycodones a day. It would be great if the pain left him.

Thank-you for your prayers. God's continued joy on this journey.

God Bless,
LesLie, Les, Rebecca, Sam and Joshua Our Champion Warrior

Wednesday, February 16, 2005 9:27 PM CST

Hi All,

Today was better for Joshua on all accounts. He still had the symptoms of Monday and Tuesday, but they were milder. He hasn't really eaten today which might be one reason he had a better day. He feels eating triggers pain and nausea. Right now I am pushing to get a cup of homemade soup down him.

Joshua went to youth church tonight and played the drums. I am sure it was good for him just to get out.

Blessing to all and joy on this seemingly never ending journey.

Love,

LesLie, Les, Rebecca, Sam, and Joshua our Champion Warrior

Tuesday, February 15, 2005 5:18 PM CST

Hi All,

We had beautiful weather yesterday and today in Spring Hill. I even washed our van and thought about pulling weeds.

These last two days have not been good for Joshua he has been having; nausea, stomach hurting,sleepiness, itching and low appetite.
The problem may be graft vs host disease. For we lowered on the medicine cyclosporine; this medicine keeps graft verses host at bay. Right now Dr. Frangoul wants us to watch him and for the itching give him Benadryl, which as we all know will make him more sleepy. "Goodnight Joshua."
I just have to let the schoolwork go and just continue to concentrate on his health. Which is frustrating because we are getting behind, but we do have the summer to catch up.
I am thankful my son is alive, all this other stuff will work itself out.
Joy on this Journey,
Our Love,
LesLie,Les,Rebecca, Sam and Joshua, Our Champion Warrior

Sunday, February 13, 2005 8:57 PM CST

Hi All,

Today, Joshua told me he feels like he is getting his strength back. This afternoon he was able to practice drums an hour and a half. Believe it or not Joshua has started practicing the bass and acoustic guitar. His very good friend, Sam is helping him. Sam said Joshua is a fast learner. Joshua can do all these instruments sitting down which is a plus for him.

Joshua's toe is starting to hurt more now and it is not fun for him to soak it. He is taking extra oxycodone for the pain.
The throat problem Joshua has had has not diminished, so please continue to pray for his healing. One more thing, Joshua is noticing his appetite has lessened. He did not want to eat supper tonight. I talked him into eating some casserole though. I asked him what would he liked to eat for the next few days, hopefully that will get him eating.
Thank you for your support and prayers and know we still LOVE to receive notes from you all in the guestbook.
God's Blessings,
Joy on this Journey,
LesLie,Les, Rebecca, Sam, Joshua, our Champion Warrior

Saturday, February 12, 2005 8:53 AM CST

Hi All,

Joshua had a sleeping day on Friday we did not get much done.
In fact, we did not do any school. He said his body was just hurting all over.
Joshua went to the foot doctor and had the left side of the right big toenail removed. It was ingrown to the point of almost having it removed permanently. He got the four shots in the toe and we both felt it as he crushed my hand during the process. Dr. MacArthur then said, "It looks like you handled this much better than last time." To which Joshua agreed. I was having second seconds thought about this conversation as I studied the indentations my wedding ring left on my little finger. Then I thought, he did do better because he did not shed any quiet tears like last time. I am thinking his pain tolerance is getting better.
We went home to soak his toe and he did MUCH better than the last time.

The congestion is still hanging around but differently now. We need your prayers that it will go away. We prefer not to have the scoping done.

Today, Saturday, he is up and about and walking pretty good, I think it will be a good day. We plan on doing some school. God bless you! Enjoy your day.
Love,
LesLie, Les, Rebecca, Sam and Joshua our Champion Warrior

Tuesday, February 8, 2005 8:22 PM CST

Hi All,

Hey! We have new pictures, take a look.

We went to the clinic today. Joshua was able to get his IVIG, takes about one and one half hour. He did really well this time. In fact he sat and ate most of the time while getting the IV. He lost a little more weight since Friday and he is trying to keep what he has. He is eating three meals and a snack so he can't do much more.

Dr. Frangoul wanted to do a bronchialscope. Which means put him 'under' and scope his bronchial tubes. Those of you who have been with us since September 2003 will remember Joshua had a stint put in his bronchial tube to open the passageway because there was so much damage done to it when Joshua had the aspergillus (fungus) in his lungs. Dr Frangoul also wanted to do a cat scan to see what was happening inside Joshua's body. He also prescribed a antibiotic, Leviquin.

Our lung doctor saw Joshua at the clinic and talked to Dr. Frangoul about holding up on the scope and cat scan and seeing if the antibotic clears Joshua up.

Our lung doctor will see Joshua on Feb the 18th after the round of antibotics. Joshua did a breathing treatment at the office and felt so much better that we will do the treatments at home now until this infection clears up.

We met a family today whose son, Matt, is going to have a bone marrow transplant in about two weeks. Dr. Frangoul asked us to talk to the family. We were happy to share our experience. Their web page is www.caringbridge.org/tn/miraclematt
Please keep them in your prayers.

Joshua was a tired young man when we got home. He lay down on the couch and asked Sam to massage his legs, which Sam did willingly. Sam is a sweet brother and Joshua is blessed to have him.
Since many in Joshua's school are ill, Dr. Frangoul said to keep Joshua at home this week. Good week to do lots of home schooling.
God's blessings,
Joy on this journey,
LesLie, Les, Rebecca, Sam and Our Champion Warrior Joshua

Monday, February 7, 2005 5:12 PM CST

Hi All,

I hope those of you who saw Joshua's newspaper story enjoyed it. It sure was fun to see a colored picture of Joshua and Brett Farve on the front page of the Lifestyles section.

Joshua had his doctor visit last Friday. All his blood work is fine. Thank-you Lord for healthy blood counts.
Joshua lost some more weight, about two pounds. He is eating well, so they think that him being more active would account for the weight loss. I have Joshua eating an apple a day and taking enzymes. Both of these things help with the digestion and diarrhea. They have certainly normalized Joshua's body and those problems are basically gone.
Dr. Frangoul gave me a high five Friday because he was so happy for Joshua. That was fun! As he was walking out the door I said, "Looks like the food and the things I found for Joshua have helped him." No answer from him. I guess always the chemical doctor. It is fun to bring in things for Dr. Frangoul to look at, he usually says yes to using them, but teases me at the same time. Anyway it is fun.

We had to go for another chest x-ray because the cough is not clearing up. The x-ray showed nothing, which we all expected because we believe the problem is in the throat.
We were told to make an appointment with the pulmonary doctor.

Today, our nurse, Cassie, called up and told us Joshua needed the IVIG, the intervenous immune booster. I believe it has been a least two months or more since the last IVIG. It is great to know his system continues to get stronger. This just might be the punch Joshua needs to get over the cough.
I had to call Cassie back today because Joshua is now coughing up half blood when he coughs up. She said to bring him in tomorrow and they will get the pulmonary doctor, Dr.Moore, to come in and see Joshua. Hopefully we will get this cough situation cleared up. We will get the IVIG tomorrow which is great because now we do not have to wait until Feb. 25th.

Joshua continues to have sore legs. We are trying to switch the oxycodone and the ibuprofen which should help lessen his tiredness in the morning. We started the medicines today and unfortunately they are not working really well so far. Today he took three ibuprofen and two hours later he had to take the oxycodone, (with the doctor's ok of course.) We are going to work on the new schedule this week and see if it helps.

One medicine down! No more actigall, which is a gall bladder medicine. He also gets to cut the amitriptyline in half. The amitriptyline is a night time medicine that helps one sleep and is an anti-depressant. Cassie said that medicine would contribute to his tiredness also. Hopefully all this medicine moving around we are doing will help Joshua and allow him to have some energy -- something he is still lacking.

Well this is the top of the minute news today. Enjoy your night.

God bless and love,
Joy in this journey,
LesLie,Les, Rebecca, Sam and Joshua, Our Champion Warrior

Sunday, February 6, 2005 6:51 AM CST

Hi All,

JOSHUA'S PICTURE AND STORY IS IN THE LIFESTYLES SECTION OF THE COLUMBIA NEWSPAPER, THE DAILY HERALD.

THEY DID A GREAT JOB. IF YOU CAN CHECK IT OUT.

JOY ON THIS JOURNEY,
BE BLESSED,
LESLIE,LES, REBECCA, SAM, JOSHUA. OUR CHAMPION HERO

Monday, January 31, 2005 12:08 AM CST

Hi All,
Well, that was disappointing. Joshua was not in the Lifestyles section this week. Even though the person in charge told us it would be on the 30th. Les is thinking they changed it to Superbowl weekend - a more exciting time. We will see.

Joshua's legs continue to hurt. Joshua is down to one oxycodone in the morning it makes it hard for him at night though. At night he is allowed to do Tylenol 1000mg.but only every other night. The in between day is tough. They do not want him to use Ibuprofen much because it makes platelets forget what they are suppose to do. We are going to the doctor on Friday. Hopefully they will give him something on the 'other' night while Joshua works down on the oxycodone.

Tonight, we are having Joshua's Wishmaker, Kelly, over for dinner. We have been looking forward this evening, it will be fun to show her the pictures of the trip. She worked hard on Joshua's behalf and it will be great to show her the fruits of her labor.

Joy on this journey,
Be blessed,
LesLie, Les, Rebecca, Sam and Joshua our Champion Warrior

Friday, January 28, 2005 6:42 PM CST

Hi All,

We have some exciting news! After Joshua's Make-A-Wish trip Les wrote a brief summary on the adventure and we sent it off to the Columbia Daily Herald. We were told it was great and that it will make the Sunday,January 30th, Lifestyles section!! We're excited about the community getting to share in Joshua's Make-A-Wish trip!

Joshua continues to take naps about every other day. He is down to one oxycodone daily. His right toenail continues to have pressure put on it due to the neuropathy. On February 11th he will have part of the nail removed.

Next week Friday we have a clinic appointment. We are hoping to get off the gall bladder medicine. One med down, eleven to go.

Joshua is ready to get his hair cut off. I told him to wait until the summer when he won't need it for the warmth. He still has full cheeks and I think the full hair balances his face. Always the hair stylist I guess I will be.

Thanking the Lord for ordinary days.

Joy on this journey,
God's love and ours,
LesLie, Les, Rebecca, Sam, and Joshua our Champion Warrior

Monday, January 24, 2005 5:45 PM CST

Hi All,

Joshua is doing well. I can see this is a good school plan for him. We all, including his teachers can see he is lighter and happier. I am starting school slowly for him at home, algebra this week. Next week we start up science and the following week it is English, writing and vocabulary. He continues to read from the school's booklist.

Joshua had an experience with the Lord during his devotional / Bible reading on Friday night. He was given the gift of God's joy!
He said it was better than any narcotic. Now that is one thing Joshua would know about. He said he feels light - a load he didn't know about was lifted off of him. He said now he understands "The joy of the Lord is our strength" - Nehemiah 8:10.

Joshua said with tears in his eyes," With this JOY I could go through anything."
The pain that has continuously been a part of his life was blinded by Jesus' joy during the time this was all happening. He had a jumping for joy feeling and felt as if he were gliding on air. It was weird - he felt nothing yet he felt freedom God took a heavy burden away.

How wonderful of Joshua's Heavenly Daddy to take care of him in that way. Is'nt God good ! Thank-you Lord.

His joy on the journey,
Love and Blessings.
LesLie

Friday, January 21, 2005 12:49 AM CST

Hi All,
This past Wednesday we had a meeting with Joshua's teachers and the principal.
It a wonderful meeting. I was nervous at first not knowing how they were going to handle Joshua's falling behind in school. Let me tell you, God's grace and the teachers' love for Joshua was truly evident at the meeting. They want to see Joshua make it and are behind him 100 percent! They, like we have notice how exhausted Joshua is and are concerned about the amount of stress he seems to be having. We know continued stress is not good for anyone much less Joshua. In that light, we have changed his homework load at school. Joshua will continue to go to school on Tuesday and Thursday only. He no longer will have Latin I after lunch at school. His school day will now be completed at 12:00 noon which is the time his body is done for the day. He will be tutored at home in algebra and English. We both will work on his science and one day a week he will meet with a latin teacher.

This is a terrific schedule and all seem very happy with it. It is less work for me which gives me more time with Sam's school.

These next months we pray the Lord strenghtens Joshua's body and gives him renewed strength as the eagle's.

Joy on this journey,
Love and Blessing,
LesLie

Wednesday, January 19, 2005 8:03 AM CST

Hi All,

Joshua had a doctor visit Tuesday morning. I took him to the Bone and Joint clinic in Franklin. His foot was not any better and we wanted to make sure there were no cracks in the large toe. There were no cracks. Praise the Lord! When Joshua found out he looked at me and said, "Calcium."
He has been taking special calcium, one for people who have had radiation and chemo therapy. It was fun for me to see Joshua make the connection of one of the minerals I give him and the result.

He does have a sprained in the toe and top of foot. He had bruised and stretched his ligaments. They gave him a walking boot that rocks when he walks and is padded quite nicely. He said it felt so good and did not hurt to walk at all.

Joy on this journey,
Love and blessings to you all,

LesLie, Les, Rebecca,Sam and Joshua our Champion Warrior

Saturday, January 15, 2005 5:48 PM CST

Hi All,

The doctor visit went well. All counts are doing well and platelets jumped back up to 160. Thank-you Lord for good counts. Joshua weighed in at 159 now. He has lost about 6-7 lbs. He says he is eating but I know he can 'forget a meal' and if I make him a fruit smoothie complete with cod liver oil and flaxseed fiber sometimes it may be all he has for breakfast. We will continue to watch the weight.

He has been coughing up stuff so they took an x-ray just to make sure no aspergillus or anything else for that matter is in the lungs.

We were done so quickly that after the x-ray the boys continued to play checkers while I read. I guess we did not know what to do with ourselves.

Joshua was in bed by 9:00 P.M. and was out like a light. He did not take his 10:00 P.M. pills and felt lousy in the morning because of it.

When he is home the whole day the naps lighten up a bit. It is being outside that tires him out. He has decided to quit the youth band for the time being.

I think Joshua is doing much better after being home and I am glad it was allowed by the school. We are so blessed with our school.

Have a great night! Joy on this Journey!

Love and Blessings,

LesLie, Les, Rebecca, Sam and
Joshua Our Champion Warrior

Thursday, January 13, 2005 9:32 PM CST

Hi All,

Joshua is doing better, thank-you for your constant prayers. Tuesday was a slow day with a good nap and still to bed at 8:00 P.M. Wednesday, Joshua woke up with a smile on his face(a smile in the morning is something for him!). He went to youth group and went to bed about 9:15 P.M.

Today, was a slower start than yesterday. After a hour or so he started to feel better. He said his legs always hurt when he wakes up from sleep.

We were invited to be guest speakers at the Make-A-Wish
Celebration. This is where they thank sponsors, volunteers, and bring in Make-A-Wish families to share their experiences. We put pictures of our adventure on a board which many enjoyed. Les, Joshua, and I spoke about the terrific time we had in Green Bay Packer Country. Joshua was a hit and was asked by the Executive Director of the Make-A-Wish if he would speak again for them. He said he would love to. Isn't that cool? Joshua said he was not scared at all to speak and rather enjoyed it. He certainly has passion for the trip and that is what people like to hear. We had a great night! Our two hospital social workers, Hope and Cindy, were there too. It was enjoyable to visit them out of the hospital atmosphere.

Tomorrow, Friday, we have a doctor visit. I will be questioning the doctor about Joshua's excessive tiredness. Hopefully something can be done about it.

Continuing with His Joy on this journey,
God's blessings and love,
LesLie, Les, Rebecca, Sam and Joshua Our Champion Warrior

Monday, January 10, 2005 8:07 PM CST

Hi All,
Joshua could really use your prayers this week and beyond. He fell down five stairs and hurt his already painful left foot.

Joshua is taking a week off of school to emotionally and physically rest up. He continues to be exhausted and still tired even after he rests. Joshua is slowing down in school and falling behind somewhat.
We will plug away with the homework at home and pray for the best.
Joshua went to the eye doctor and his eyes are great no problems whatsoever. Thank-you Lord one less thing to think about.

Leaning on God's Joy in the journey,
Love from us all
LesLie, Les, Rebecca, Sam and Our Champion Warrior, Joshua

Thursday, January 6, 2005 10:31 PM CST

Hi All,
Thanks for putting up with me and helping me bear my sorrow. Something that is difficult is seeing Whitney, Connor, Justin, Andrew, and Jeffery at clinic and one by one they die. Sometimes I think,"who is next"? It seems like a horrible wait and see game. We have known a total of ten children who have died, some in the hospital and some in their home. For ourselves, we continue to believe that God gave us a promise in Joshua 13:1

One thing that was put in my mind was the Bible story of the young man from Nain who was dead. His mother a widow and now childless. Jesus was in the town and saw the funeral and this is the part I like, He had compassion...
Jesus had compassion then and Jesus has compassion now. He hates cancer more than we do. He is on our side. Remembering that helps me a lot. Jesus, I thank you for loving us and bearing our burdens, I give you my burdens. Amen.

Joshua is doing well. We praise God daily for his life.
He has started back up at school and getting into the swing of things. He has moved his pill taking around so he can be in bed at 8:00 P.M. if needed, which is what he did tonight.
He is enjoying playing the drums on Wednesday at youth church.
Joshua had a little breathing problem on Wednesday night. It was hard to get a good breath even after the inhaler treatment. My mind started to wander.... but I brought it back into the promises of the Lord.

Leaning on His Joy which is true joy,
God's love and our's,
Les, Leslie, Rebecca, Sam, and our champion warrior, Joshua

Tuesday, January 4, 2005 11:53 AM CST

Dear Prayer Warriors,

Please pray for Whitney, her parents were told here lungs are in critical condition. Her web page is caringbridge.org/tn/whitney.

Oh Heavenly Father,
We need your divine touch on Whitney's lungs. We ask that you spare her life and heal her totally. Lord touch her lungs and make them whole. Lord we pray Your word back to you, by Jesus' stripes Whitney is healed.
In the healing name of Jesus,
Amen (let it be so)

It is Tuesday afternoon and Whitney has died. I just do not understand Lord, I just do not understand. Another promising life cut down. It is wearing and I wish I had some answers.........

Sunday, January 2, 2005 2:50 PM CST

Hi All,

Hope your new year has started off well. Les took Joshua and Sam to the clinic on Friday while Rebecca and I stayed home and hung out together. Joshua's appt. was at 10:00 and they were out by 12:00. I was impressed. Joshua's counts have bounced around a little, but all good, thank-you Lord. Dr. Frangoul has not lowered Joshua on the predisone or cyclosporine much to Joshua's disapointment. Joshua is chomping at the bite to get rid of these pills. I believe Dr. Frangoul is gong so slowly with the reduction of meds because of Joshua's history of his first nine weeks in the hospital. That was when anything and everything went wrong with his body. So... we will go slowly and pray no problems pop up.

Whitney, a 19 year old girl who was in the hospital summer of '03 with Joshua is having a terrible time after her transplant and could use all the prayers we can give. She is in critical care on a ventilator now. Her web page is caringbridge.org/tn/whitney.

God's joy on this journey,
God's and our love to you all,
LesLie

Wednesday, December 29, 2004 5:05 PM CST

Hi All,

Wasn't Joshua a great storyteller?
We certainly had a terrific time in Green Bay. I even got the Packer bug while there. Everyone we met went out of their way to make this excursion a wonderful one for our family. When we met Brett Farve and many of the other Packers I realized they are people just like us.
I was nervous in the beginning but the players we met just acted like 'regular folk' they put me at ease quickly. Joshua had the pass thrown to him by Brett, a great catch but I asked Brett if he could do it again since Rebecca was unable to video the whole throw. ( I was in the way) then I asked Brett to throw one more time, (again something with the videoing.)Yes, he graciously threw another pass.
At lunch time with the Packers they came up to our table and asked if we wanted pictures or autographs. Some wanted to know who was whom, by the end of the meals I was just standing and raising my hand half saying half yelling, "I'm the mom!" Lots of fun we just were made to feel at home. Great set of guys on that team.
I know why I do not live in Wisconsin anymore, it is COLD!

We were so suprised to have so many friends show up at our door on December 21st and sing carols to us. Thank-you to the Rick and Natalie Evans, along with their children Nate, Cannan, Elijah and Allie who cooked up the delightful scheme. Janet Turco was there along with her brother David and nephew,David. Thanks to Mike and Sisse Pfieffer, Vickie and Scott Pugh along with their children Daniel and Lydia. Mike Dennee, Jordan Kelley and Bobbye Bates and her two boys were there to round off the group. YOU ALL BLESS US!

Christmas was relaxing with Christmas Day watching the movie, Holiday Inn and another one, though the name escapes
me. We finished off with a ham meal complete with a 'Happy Birthday Jesus' pie for dessert.

It has been difficult for Joshua to get homework done during the school break. He told me today, "I am not sick yet I am not healthy." He is tired of this in between stage. If he does not nap one day he NEEDS it the next. Joshua is tired of pills and is ready to be done with them. He would love to be outside running around but his feet prevent that. Pray for continued physical and mental strength for Joshua. Many times he feeling as if swamped with homework and does not have the time or stamina to work and get it all done properly. His teachers have bent over backwards to help him so.. I don't know what else we can do.
Pray for wisdom for us as he starts the next semester.

Friday we go to clinic will most likely will write on the first.
From all of us to all of you.Happy New Year to all of you.
God is in control and because of that we can have continued joy on this journey.
His Love and ours.
LesLie,Les, Rebecca, Sam and Joshua, Our Champion Warrior

Friday, December 24, 2004 1:43 PM CST

Part VI of my Make-A-Wish trip

Once we got back into our seats I was excited. It was a great feeling to be at Lambeau Field for a real game. Once they introduced the Packers I felt the energy of the whole stadium. Once halftime arrived I wasn’t too thrilled with my Packer team. They were losing, to the Lions 13-0. The wind started picking up and we had about 40mph winds at a temperature of 20 degrees. It was extremely cold. After halftime the game started to get exciting. With 2 seconds left in the 4th quarter, the Packers kicked a field goal to win the game 16-13. We were so excited.

When we got back to the hotel I went out like a light. The next day was our last day and we spent it mostly sight seeing. When we were leaving Green Bay I knew I was going to miss being in Packer land, but at the same time I was ready to go back home. Well we flew to Minneapolis and had an hour in between flights, so we were able to visit with our former youth pastor. After we got on the plane to fly to Nashville it was already night time. I got to sit next to the window so I saw all the lights down below. Even as we were approaching Nashville I saw the Tennessee football Coliseum. The Titans were playing the Chiefs on Monday Night Football. It was very cool. We finally got to the airport and then we got our luggage. We had a limousine ride to where our van was and then loaded up and went home.

I was happy to be home. I knew the trip I just had would be something I would never forget. The Packer organization was so nice to me and did more for me than I could ever imagine.

Thank-you for being so patient with me all the way through. I still ask that you pray for me. I am feeling weak and I need God’s strength. Thank-you so much for your prayers. May God bless you this Christmas.

May you all have a very MERRY CHRISTMAS,
Joshua

Thursday, December 23, 2004 5:44 PM CST

Part V of my Make-A-Wish trip

Saturday was our free day and we spent the day with some old friends from Wisconsin. On Sunday the football game started at 3:15 so, we spent the morning getting ourselves dressed. Especially since the weather was in the 20’s with 15mph winds. I put on at least three layers of clothes. When we left the room and went down to the lobby of the hotel, everyone was dressed in everything that had to do with the Packers. It was so cool to see everyone dressed in Packer stuff besides my family.

When we finally got to Lambeau Field the place was packed, but somehow we made it in. We looked around for a while and then walked to the spot where we were going to meet Cathy. When Cathy arrived she gave each of us passes to the field during pre-game warm-ups. She lead us to the field and we got to walk around the whole stadium. She even took us back into the tunnel where some of the players were walking out fully dressed in their uniforms. Then she took us back outside where we waited for the rest of the team to come out. It was very cool to see all of the people fill the stadium while we were on the field. When the rest of the team came out we got to watch the defense do their warm-ups. We even had a player who we met in the lunch room, come up to us and shake our hands again.

While we watched the players warm up, Cathy came up to my parents very excited. She said she did not know they were here, but NFL films was there and they were doing a new production called the Soft Side of Football and they asked my parents if it was alright to interview me. Wow! That is amazing. Well I was excited and when they came over they asked me what was my make-a-wish. I was excited and started talking about my wish and the rest is history. My parents said I did very, very well. The lady that interviewed me said I did excellent. Even Cathy came over and said I should go into the television business. I knew that it was not normally me when I had the interview, but I’m sure I had help from above.

I will conclude my Make-A-Wish trip tomorrow. Thank-you for being so patient for the whole story.

May you all have a very MERRY CHRISTMAS,
Joshua

Wednesday, December 22, 2004 5:50 PM CST

Yesterday was over-whelming. My family was enriched with blessing upon blessing. There was a group of people who came to our house Christmas Caroling. All of our friends from a few months to a few years. We had all of them come into our house and we had a great time of fellowship and prayer. Our family was so surprised with the gifts we recieved. Thank-you so much, it meant the world to know people have not forgotten us. Even though we are not at the hospital anymore does not mean we still do not have hard times. The recovery process is long, hard, and tiring. So please keep praying. I will continue my journaling on my Make-A-Wish trip on Thursday. Thank-you so much for your paitence:)

May you all have a blessed Christmas,
Joshua

Monday, December 20, 2004 6:45 PM CST

Part IV of my Make-A-Wish

Well I turned around to see who was talking to us and it was Brett Favre! Whoa! I was shocked. I could not believe he had snuck up behind us and I didn’t even notice. He shook each of our hands and we started throwing some questions at him. One of the questions my brother asked (I was a little curious to know too) went like this. “ We have this game called Backyard Football, it has some regular neighborhood kids and some NFL stars as kids too. Well Favre is one of them and when you click on them they tell you a little story. One of the stories Favre says that he used to have alligators come up to his back porch and he and his brothers would feed them cookies. Sam asked if that was true and Brett said,” Yes!” He said that they had three, 4-5 foot alligators and they would throw Oreos or crackers. One day he said their St. Bernard became lunch for the alligators. His family found the bones later.. So pretty much after that he and his family left those gators alone. We talked with Brett Farve for about 10minutes until he had to go back onto the field because practice ended.

Cathy had Teddy and me walk toward the players till we were about 10feet away from Mike Sherman, the Packers head coach. Mike Sherman was talking to the players as they gathered in a half circle listening to his last remarks about practice or the game. Then he said, “I have a special announcement to make.” “We have two special guests with us here today, Teddy Ahsler from New Jersey (The whole teamed clapped) and Josh Nienow from Spring Hill, Tennessee.” Then after shaking my hand he said, “It’s great to have you here with us today Joshua.” The team clapped and cheered and there was one section in the group that cheered extra loud. I later found out that one was from Franklin, Tennessee and the other from Spring Hill, Tennessee. Our family had our picture taken with Mike Sherman. Then Brett Favre was hanging out with us as the team was leaving and as I was talking to some linemen he threw Sam a pass. How exciting for Sam! Mom was shouting, “Sam, you caught it.” Then she started to clap. I guess she got football fever!

Then came the time for my wish. After handing Mom my cane, I came over and got set in the wide receiver position. Sam was center and Favre took shotgun. Favre said, “Hike!” Sam hikes the ball, Nienow shoots off like a bullet. Nienow takes his route and curves to the right, then Favre passes. Nienow is out in the open, reaches out and catches the ball!
I caught the ball! Then Farve threw the ball to me again and again! Three times he threw the ball to me which was triple my wish! It was everything I dreamed it would be only much, much more.

Even though you finally heard my wish keep checking for part five and the conclusion.
Please continue to pray for me for I am still struggling a great deal. Thank-you for all your prayers.

May you all have a very MERRY CHRISTMAS,
Joshua

Sunday, December 19, 2004 11:14 PM CST

Hi All,

Joshua will journal on Monday. Today we went to a pizza place with the Pugh's, our friends from church. Les and Joshua gave them the scoop of our exciting weekend.

When we got home, Joshua took a nap and then we went to the Michael W. Smith Christmas concert. It was a wonderful concert. I was SO blessed, the music really ministered to me. The last time we were at the MIchael W. concert was Christmas 2002. Today, the 19th., is the '2 year rememberance'of Joshua's diagnose. At the concert I was just looking at Joshua, so glad he could be here with us. During intermission he changed places with Sam and sat next to me. On one song he just laid his head on my shoulder. As I stroked his mass of curls, I felt so blessed, tears of joy just ran down my face as I realized once again how God healed my son and allowed us to still have him. Joshua is ALIVE and I told him, he is my Christmas present this year. To God be the Glory great things He has done.

Can you believe that most of you have been with us in this journey now for two years?! Thank-you for your continued prayers and interest in Joshua's healing process.

Those of you who are new to this journal our first entry tells the beginning of our story on Dec 19th. 2002.

God's Blessing and love,
Much Joy on this Journey,
LesLie,Les, Rebecca, Sam,Joshua ,Our Champion Warrior

Saturday, December 18, 2004 12:45 AM CST

PART III of my Make-A-Wish

The last part of our Lambeau tour was the players locker room. I was excited to see what it actually looked like. When we walked in I couldn’t believe my eyes. The room was so big and had a giant Packer G in the middle of the room. I was looking at the players locker room and pointing out the names I had heard of all year. Like Al Harris, Mike Flannagin, Ahman Green, and William Henderson. Then there was Brett Favre’s and someone else’s and then a name I had seen practically my whole life. -NIENOW- Now you talk about just about melting on the spot. I was overwhelmed. I was so excited I could not contain myself. I mean having my own locker was incredible. It was like a dream within itself. I always dreamed of being on the Packers team especially when Favre was still playing and for 15 minutes that dream became a reality. There was even an official size ball which said, “Game Ball presented to Josh Nienow, 2004 Green Bay Packers, Wishing you the Best, December 10, 2004.” Also in the locker hanging up was a was an official NFL jersey with my last name on it. It was the exact same kind of jerseys the Packers use during their games. Now I knew I was really part of the team.

After taking a few pictures and enjoying the moment, Cathy said it was time to move on. We left the building and went to the Don Hutson Center. Which was the Packers’ indoor practice field. When we got inside it was a huge place, with very high ceilings, and astro terf for their field. I saw the Packers practicing and we all got to be on the sidelines watching. While we were standing there Ryan Longwell the Packers star field goal kicker came up to us and talked with us for about 10 min. It was a nice surprise. He was really friendly to all of us. Then Jevon Walker, after catching a pass in practice came up to every one of us and shook each of our hands. Both Teddy and myself got a football from the practice. My ball even has some chalk from the field still on it. As we were watching practice all of the sudden a voice came from behind us and said, “You guys mind if I join you?”

May you all have a very MERRY CHRISTMAS,
Joshua

Friday, December 17, 2004 8:08 PM CST

Hi All,

We had a long clinic visit today which tired Joshua out. When we got home he went to bed for a good nap. Anyway, he will write the third installment on his *make-a-wish* trip tomorrow.
Our visit to the clinic went well. His counts are looking teriffic! We are so pleased. One exciting thing is in two weeks his platelets jumped from 138 to 171! (normal is 135 -370) Joshua has not had this number since before relapse May 2003.
We are keeping with the 10mg of predisone but lowering on the cyclosporine, the anti-rejection drug. We are to go down 25mg every two weeks. This has to be monitored closely so.. we are back for visits every two weeks. They had put us down for one appointment a month, but then Dr. Frangoul said "we need to change your appointment" and he started to write 2. At first I thought he meant 2 months but he finished with-weeks. "Oh man", I thought.
I had to remind myself this is good because we are lowering the medicines.

Check after lunch tomorrow for Joshua's journal.

Having His joy during this CHRISTMAS season,
God's love and ours,
LesLie, Les, Rebecca, Sam and Joshua Our Champion Warrior

Thursday, December 16, 2004 10:32 PM CST

PART II of my Make-A-Wish

On Friday I woke up sore and out of it. Thursday had been a busy day for me, going up and down the water slides, but I wasn’t going to let all of that spoil my Friday. We ate breakfast and went downstairs to the lobby at 10:00 to meet our Make-A-Wish lady and the other family. The other family had three boys, ages 17, 14, and 11. The 14 year old was the one having his wish. They were similar to our ages and we got along well. Their youngest son’s name was Sam like my younger brother. Once all of us were ready, each family got into a limousine and we all went to Lambeau Field.

We arrived at Lambeau Field where we had a V.I.P. tour. Cathy, the woman in charge of public relations, was going to be our guide for the day. She was like the team mom. We met her on the 3rd floor, and had it not been for Cathy we would not have been allowed there. (Now just to let all of you know we had a wheelchair with us so I would be able to enjoy the tour a lot more, because there was a lot of walking to do.) When Cathy met us she handed Teddy (he was the other make-a-wish boy) and myself some cool Packer items. One of the items was a mini-Packer helmet! We started the tour with the skybox seats. Cathy said that they cost $100,000 for the whole season, not counting the game price tickets $250.00 for each of the twenty seats in each individual skybox. Wow! That is more than I could imagine spending on football games. Then we went on the bottom floor. There she showed us where the team has their meetings. There was a defensive room for just the defensive players. It looked like a class room to me. There were other rooms just like it for the offense and special teams. Then there was one for the whole entire team. We also got to take a peek at their weight room. Mike Flannagin, the Packers star center who was hurt and out for the season, was in the weight room. When he saw us he came out and shook each of our hands and talked with us a bit. Then he had to get back to work and we continued our tour. After that my brother who also played center in the Pop Warner League said, “I shook Mike Flannagin’s hand!” :)

Then Cathy took us to the tunnel where the Packers run out onto the field on Game Day. They even had preserved part of the tunnel that the legendary Green Bay Packers ran on, the Packers of the 60’s. To run out of the tunnel and look at the stadium from the level of the field was incredible. However, the field was covered and the weather was nasty. So Cathy said that we won’t stay out in the rain and wind today, but on Sunday, Game Day, during the Packers’ warm-ups, she would take us out onto the field. I just about started to baby-talk, faint and any other thing you could think of. I was so excited. I could not even believe my ears. What a Make-A-Wish experience. Even our make-a-wish lady (Jackie) said with all the make-a-wishes she had done with Cathy, she had never seen this. So after all of the excitement Cathy took us to the team’s locker room....

God bless you with a very MERRY CHRISTMAS,
Joshua

Wednesday, December 15, 2004 3:44 PM CST

Whoo! Man! What a Make-A-Wish experience. I am wiped out. But there is so much to tell I will have to split it up into three days. Starting with finally being packed we all got into the van and drove off towards Nashville 6:30 in the morning. We arrived at a place where we were able to drop off our vehicle, and they watch it for 24 hours. They took all of our luggage out and placed it all into a limo! Whoa! Now that was very cool! Rebecca and Sam were very excited too. We had never seen inside a limo much less ride one! Our driver drove us to the airport, took out our baggage and left.

Well we did all our airport stuff and got to the gate we needed to be at. We had a nice flight to Detroit. When we got out of the plane I could not believe the size of the airport! The airport even had a trolley inside. My mom, Sam and I took a ride on it to one drop-off port back to the other. My mom was nervous because she thought we would not make it back in time for our flight. We had plenty of time, about an hour.

We got onto the plane to go to Green-Bay. Ah yes, Packer territory. Once we got to the airport our Make-A-Wish lady greeted us with a sign that said, "Green Bay Packers Welcome Josh Nienow." Then we got our rental vehicle which was a Buick Le Sabre. We got to the hotel which was about 1 min. away from Lambeau Field. The hotel even had a 30,000sq.ft. water park. With two huge water slides, a lazy river, a hot tub and much more. She then explained what was going to happen that weekend. She handed me a Packer watch, a Packer duffle bag, and a Packer football made for autographing that was the official league size. After that we went out to lunch. When we came back we couldn’t wait to get to the water slides. We all had a great night going up and down the slides and playing around until we were tired. I may have worn myself out too much, but I had fun anyway. For dinner we went to the Brett Favre Steak House. It was very good. We then went back to the hotel and rested up for my Make-A-Wish day.
Have a very MERRY CHRISTMAS,
Joshua

Wednesday, December 8, 2004 7:34 AM CST

Hi Everyone,

Joshua still is doing well. We are pushing the water. I know it is not a cure all to end all, but it certainly helps. One can feel sluggish just because he is not drinking enough water. The word for today is drink your water.

Joshua went to a different foot doctor for a second opinion on the ingrown toe nails and the neuropathy. Remember back in July(?)Joshua had four injections for the numbing of toe to remove the edges of the big toe nail. Someone told us that was not normal.
Everyone thought it caused his floppy toe. The new foot
doctor said the shots did not cause the floppy toe and three to four shots is normal procedure. We were happy about that information. The reason for the floppy toe is, in the calf is the muscle that moves the big toe. The neuropathy is greater in the right lower leg than left one.
The foot doctor also said radiation can cause neuropathy.
He did not think it was the chemo. Which made sense for I had heard only of one type of chemo causing neuropathy, and Joshua did not have that particular one. It looks like we received some good explanations and are happy with them.

Now for the drum roll..... Joshua is now going to tell you all about his 'Make A Wish'.

I finally get to have my dream come true with The Make A Wish Foundation by making my wish. Tomorrow the whole family will fly up to Green Bay, Wisconsin. There we will go to our hotel, which has a water park in the hotel. It looks awesome! Then Friday my wish. We will get a V.I.P. tour of Lambeau Field and then go to the Packers pratice field. Their I will meet Brett Favre and he will throw me a pass. How cool is that? Favre has been the quarterback for the packers as long as I can remember being a packer fan. So he is the guy. The Make A Wish people won't tell us anything else because they want to surprise us, so I am looking foward to that. Then Saturday is a free day and Sunday is gameday. We get to watch the Packers play the Lions at Lambeau. Which will be awesome! My first live Packer game at Lambeau. Then after the game I am guessing we have free time and Monday we come home. I am so excited. It will be an experience of a life time. When I get back it will be so packed with stuff that I have to journal a day for each day I am their. Please pray that the swelling in my legs and feet will go away or at least not be so puffy that I have trouble walking. Thank-you for all your prayers.
Joy on the Journey,
Mom, Joshua, Rebecca, Dad, and Sam

Saturday, December 4, 2004 8:09 PM CST

Hi All,
I want to thank you for your prayers. Joshua had a great day today. Tonight, when I asked him how he felt, he said, "Not once did I think of needing a nap." Joshua did complete drinking his half gallon of water today. It was a concentrated effort on his part.

Friday, he woke up and came downstairs and went right to the couch. His legs were hurting, as Sam was massaging them he noticed red dots on Joshua's ankle, which Sam showed me. I thought, "What is happening to him?" Those red dots were like the straw that broke the camel's back. The thing is, I did not even know I was that stressed out over Joshua and his health. I remembered Joshua 13:1 so there was no fear, just exhaustion on my part. I was thinking "when is this going to end"? I just walked into the kitchen and started to cry, just emotionally tired of this situation. I called my parents and just cried it out and they talked to me and how God is most near when we are going through a time such as this. My dad said just call the doctor. My parents and I had a good conversation and I finished up feeling quite good. Thank God for the listening ears of parents.
On a humorous note I was talking to Joshua yesterday on how tired he was and how he feel asleep on the couch. He disagreed with me saying, "I was not tired Mom, I was just sleeping."

Joshua has been upstairs singing and putting up his Christmas tree with Sam. It makes me smile for I have always said "A singing child is a happy child." I know Joshua is not a child, but you get the point.

Thanks for hanging in here with us.
God's blessings on you all,
Continuing and learning of His joy,
In His Love,
LesLie

Friday, December 3, 2004 4:19 PM CST

Hi All,

I wrote earlier that we had to take Joshua to the clinic
today. He was not doing so well and I wanted to make sure he was o.k. since he is going on his Make-A-Wish this coming Thursday.
His counts are fine. I was concerned about his platelets since he had red dots on his ankle. Dr. Frangoul said it is a GVH rash. Joshua was dehydrated and had to get large bag of IV fluids. We have to call the Dr. and let him know how he is on Monday.

I am on our social worker's computer and Joshua is ready to go so we will write in a couple of days.
Thanks for checking in.
Joy on the Journey,
God's love and ours.
LesLie

Friday, December 3, 2004 10:56 AM CST

HI All,

Joshua is not having a good day and we are going to see Dr. Frangoul. Some GVH flare-up not eating much-sleeping much and now some red spots on the inside of his ankle-
it may be pica. Just pray all goes well because ....
Joshua is going to his Make- A- Wish Next week Thursday thru - Monday. I will have Les tell you all about it since it is a boy's dream.

Still in His Joy on this journey,
God's love and our's
LesLie

Monday, November 29, 2004 7:53 PM CST

Hi All,

We had an excellent Thanksgiving. Two families from our church came over to spend the day with us. We finished off the night with a campfire in our backyard. The boys(four of them) played with light sabers. Yes, Joshua was happy to be part of that bunch. Allison and Oyin, the two nine-year old girls, ran and screamed as they chased the boys and then the boys chased them.
We had s'mores by the campfire and of course the boys enjoyed playing with the sticks for the marshmallows. This was Joshua's first campfire in two years. After the transplant he needed to wait one year before being around a fire.

Friday, our family enjoyed the shopping scene. By Saturday, Joshua's feet had swelled up and by Sunday his right foot was so swollen he had to wear just socks and sandles to church because he could not put on his shoes.
By Sunday night he got his shoes on though the right shoe was tied very loosely.

Today, Monday, has been an early day since we had to get to the clinic at 8:30 a.m. I drove as Joshua graded my driving. Not good as far as he is concerned, so watch out all you Tennesse drivers. We did not wait for an elevator and so we walked two flights of stairs. By that time Joshua was tired and done walking. There just happened to be an empty wheelchair right in the hallway so Joshua plunked down in it and Sam had the honors of wheeling him to clinic and Joshua got up from there. The IVIG took about three hours. The nurses had to cut the rate of the infusion because Joshua started to feel sick and could taste it in his mouth. We studied the reformation time period, did vocabulary and the boys did some Game Boy. Yes, Tom and Karen, they still love the gift.

We met Les for lunch, actually Les and the boys went to Subway and I went to Wild Oats, a health food store. After my little shopping I met them.

We had a couple more stops and we were home by 4:00 PM. Joshua promptly took a nap and I rollerbladed and washed the car while Sam played with the football.

Joshua still took naps this past vacation week but was not as tired as when he goes to school. The early rising and driving compounded with general school activities just tire him out still.

Our biggest prayer request is for Joshua's feet. He has lots of pain.We are adding Vit B-12 to his many pills and vitamins. Our nutritionalist book said to take 1000mg twice a week and in six weeks you should see some improvement. We are also going to try to up the amount of cod liver oil to 2 tablespoons a day. I pray these natural things help Joshua.

We saw Whitney at the clinic today. Whitney, keep on getting healthy! We are praying for you.

We saw another boy, Lucas, age 20, who had a transplant when Joshua did. He is on twice as many medicines as Joshua has lost 40 lbs, and still has his chest catheter. He has been in the hospital a lot since his transplant and is not doing as well as Joshua. he certainly could use our prayers.

Again I realize and praise God on His healing of Joshua. May I give a holy shout and say "THANK-YOU LORD!"

Thursday, November 25, 2004 9:35 AM CST

HAPPY THANKSGIVING
Make a joyful noise unto the Lord for He is good and His mercies endureth forever.
What a wonderful Thanksgiving Day for us. I am SO thankful to be home and cooking. Joshua is cancer free. Les has retired from G.M. and quickly found a new job with Dave Ramsey's company. Rebecca also works with Dave Ramsey and is getting paid well for it. Sam is doing great in school and had a teriffic football season.

We are ALL home and are having friends over. The boys and I talk about remembering to be thankful for everything and saying thank-you to God for the little things; bending over and picking up something, being able to read and even clean. I know some people who cannot do these things and would love to. I want to have more of an attitude of gratitude.
Joshua's nurse called and said his immune system is down and needs to come in for the IVIG, the immune booster. Hopefully that will help clear out that ycky feeling he has been having. We go this Monday.
Joshua's mornings continue to be slow while afternoons are better. Wednesday he was able to get some good homework done. We will even do some studying today.

Spring Hill has a Wellness Center with a certified nutritionalist who owns it. She wants to help people before they get ill. She used to work with a Dr. Mark Houston of Vanderbilt Hospital. I believe he now works at St. Thomas Medgroup. He is a doctor who believes in working with proper nutrition not just pills for getting healthy.
I am learning all sorts of things. One thing is, cod liver oil helps neuropathy. I now make smoothies and put it in. Joshua does not taste it, though he does know about it.
If you have arthritis check out cod liver oil on the web; there are many studies done concerning arthritis and the effect cod liver oil has on it.
I put Sam on a Juice Plus (name brand) world wide study for children. He gets this product free for one year and I just have to fill out a questionaire every three or four months. I put Joshua on Juice Plus also. It is considered a food not a supplement. It gives a person nine servings of fruit and vegetables. Many good things have come out of this product but it takes 3-4 months to show up. One reason it takes so long is cells can live up to as long as one-hundred days and bones totally change over only once every year. Scientific research has been done from King's College, London, England to our very own Vanderbilt. I am excited to show Dr.Frangoul the paper work on this product and how Vanderbilt was a part of this. He always good naturely teases me about the things I bring in for Joshua to try.

When Joshua is in continual pain, doing and finding things out for him helps me feel somewhat in control of his situation. I know prayer and time will help and I am glad he is alive! I just want his quality of life to be once again as an active teenager.

Blessings on this day,
God's love and ours to you and yours,
Joy on this journey,
LesLie, Les Rebecca, Sam and Joshua, Our Champion Warrior

Monday, November 22, 2004 11:37 AM CST

Hi All,
This tiredness is still getting Joshua down. He still does not feel up to par. He was very tired on Sunday morning though felt better in the afternoon only to go to bed aound 4:00 p.m. and have me wake him at 6:00p.m. His first words out of his mouth were,
"I can't wait for three and one-half hours for then I can go back to bed."

He does not have a fever or anything one can put their finger on 'cept an overall body soreness, slight sore throat and coughing up infectious looking uck. So.. we covet your prayers that this will leave quickly and nothing further will develop. He is taking a hot tub in hopes of making his body feel better.

Joshua has off this week for Thanksgiving, that should give him some much needed rest. He always has these high hopes of accomplishing so much homework each day,yet, when the new day comes it does not work out that way.
Hopefully this afternoon or tomorrow he will be doing better. I know all your prayers WILL give him a boost- we pray that in Jesus' name Amen.

Thanks for your prayers,
Joy and gratitude on this journey,
In His Love,
LesLie

Friday, November 19, 2004 7:32 PM CST

Hi All,

We had a 10:00 a.m. appt. this morning, but we did not get in until after 12:00. I finally had to tell Dr. Frangoul we have a 1:00 appointment with the lung doctor. Hint, hint in other words we need to get going. I guess they were waiting for a room for Joshua. All his counts were great, some still a little off, but the doctors were delighted with the counts.
Since Joshua has been so exhausted, we are keeping the prednisone the same for a month instead of lowering it. Going down more slowly should help ease the tiredness.
We made it to Dr. Moore, the lung doctor, just in time for his appointment.
He checked out Joshua and said he is doing as well as he is suppose to be doing and is happy with Joshua's numbers. Joshua's breathing test showed 67 percent out of 100 percent, which means he is at two- thirds lung capacity. Most cancer kids run in the 60's or 70's percent range, Dr. Moore said. He also said the numbers sound scarier than than they really are. It is rare, but some people are born with only one lung. God gave us extra where we can be just fine with one lung.

Joshua is allowed to do whatever his body permits him to do. He might huff and puff a little more than his friends, but all he needs to do is stop and rest a bit and go on. His numbers might increase a couple points but will never be at 100%, according to the doctors, because of the chemo and the fungus called aspergillus, which made the removal of the lower left lung necessary. We know the Lord can surpass the doctor's expectations though!

I just think, "my son is alive" and we will deal with anything we have to deal with.

Thank-you Lord for a good report!
Joy on this Journey,
In His Love,
LesLie, Les, Rebecca, Sam and
Joshua,Our Champion Warrior

Thursday, November 18, 2004 12:59 AM CST

Hi All,
Joshua is doing much better. Thanks for your prayer support. He went to school today and I told him if he is too tired during the later part of school just to get his latin assignment(last class of the day) and then come home.
I certainly do not want him driving when he is so tired.

Two doctor visits tomorrow Dr. Frangoul and Dr. Moore (lung doctor). I will write tomorrow and let you all know how they went.

His Joy on this earthly journey,
In His Love,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Tuesday, November 16, 2004 2:58 PM CST

Hi All,
Joshua did not have a good day today. Les, drove Joshua to school and back which was a good thing for Joshua. He said he would not have gone to school otherwise. Again, he is exhausted and is now feeling nauseous to the point to where he needed the old stand-by Benadryl (the medicine of choice for the queasy stomach at Vanderbilt). Other signs of GVH are acting up, so he is not a happy camper right now. His throat is also hurting so I made him some tea specially formulated to coat the throat.
He said this was my worst day at school. I told him it can only go up from here then.

Joshua is afraid he is gettng behind in homework. His teachers have been notified of how he is feeling and are willing to do anything to help him. They are wonderful and we are blessed to have Joshua going to this caring school.

Joshua is looking forward to the doctor appointment on Friday. We will let you all know what the doctor says.
Please keep Joshua in your prayers to get over this hump in his journey.
Thank-you and God's blessings,
His Joy On This Journey,
Love,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Tuesday, November 16, 2004 2:58 PM CST

Hi All,
Joshua did not have a good day today. Les, drove Joshua to school and back which was a good thing for Joshua. He said he would not have gone otherwise. Again, he is exhausted and is now feeling nauseous to the point where he needed the old stand-by Benadryl (the medicine of choice for queasy stomach at Vanderbilt). Other signs of GVH are acting up, so he is not a happy camper right now. His throat is also hurting so I made him some tea specially formulated to coat the throat.
He said this was my worst day at school. I told him it can only go up for here then.

Joshua is afraid he is gettng behind in homework. His teachers have been notified of how he is feeling and are willing to do anything to help him. They are wonderful and we are blest to have Joshua going to this caring school.

Joshua is looking forward to the doctor appointment on Friday. We will let you all know what the doctor saids.
Please keep Joshua in your prayers to get over this hump in his journey.
Thank-you and God's blessings,
His Joy On This Journey,
Love,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Thursday, November 11, 2004 8:23 AM CST

Hi All,

What a beautiful cloudy day we have for Veteran's Day.
Any veterans out there reading Joshua's web page, I want to say a BIG thank-you for serving. I especially want to thank my dad for serving so bravely in WWII. Our family certainly has heard the good and bad stories of that war through him.
Love you Dad!!

Now about Joshua, he has lowered to 20 mg on the prednisone every other day. We are finding he is very tired. Tuesday, he went to bed at 6:00 p.m. and we woke him up at 8:00 pm. Sam and I wanted to play the game Sorry with him, but he just sat in the chair head hanging down and not talking or opening his eyes. Needless to say I told him to go back to bed. He never did eat supper. Joshua slept till 6:45 a.m. and woke up extremely cheerful and smiley. Anyone who knows Joshua, understands this is unusual for Joshua. He was so happy he was giggley, it was funny to see.

It seemed as if some GVH was acting up on Wednesday. Enough to keep him home from Youth Church. Joshua being so tired and napping slows him down on his homework. This understandably is making him a little nervous, for he does not want to fall behind in school.

His legs have been hurting more, along with over all more body ache. We don't know if this is because of the lowering of the prednisone or because we are completely off the Benfotamine, (a high dose of thiamine pills for the neuropathy.) At any rate he is on three oxycodone pills a day verses three weeks ago doing three oxys every two days. I am jump starting the thiamine pills. I need to see if they will lessen the pain and his need for the oxys.

At Connor's wake, Les had told Rhonda, Connor's mom, "We have seen far to many children funerals." To which she replied," Yes, we are in a special club that no one is lining up to join." It breaks our hearts to see so many parents we fought along side of, lose their children. We came just close enough to imagine their pain. We are blessed to have Joshua, even with the ups and downs.

Keep loving your family.
His eternal joy on this earthly journey,
Love,
LesLie, Les, Rebecca, Sam and Joshua our Champion Warrior

Saturday, November 6, 2004 4:13 PM CST

Hi All,

Joshua received his flu shot on Friday and is feeling good today. I found out with further investigation that the two who were sick after receiving the flu shot were sick because of other circumstances. One has a medicine which causes flu like symptoms and the other was feeling sick with no fever prior to the shot. So, I guess the doctor was right when he said one can’t get the flu from the shot.

Yesterday, Les, Sam, and Joshua played some football in the backyard. Joshua is feeling it today and is worn out. I think it is a good worn out and hopefully he will get strengthened by it.

I have been thinking a lot about Rhonda and Eddie losing their only son, Connor. I had to talk to God about this and I realized God understands how it feels to give up an only son. We all know John 3:16 - For God so loves the world that He gave His only son that whoever shall believeth in Him shall not perish but have eternal life. God gave His only son to a sinful world to die a horrible death that we might be saved. As hard as it is for Rhonda and Eddie not to have Connor with them and to know their son is physically dead, it is good to know that Connor now has complete healing and is in the loving arms of his savior, Jesus. Continue to pray for this family as they go through these days and weeks ahead.

Joshua actually had an algebra lesson on Friday, which makes me very happy. We will get through these subjects yet.

The new medicine has not come out to replace the Neurontin and oxycodone Joshua is taking for leg pain. I know when Dr. Frangoul finds out about this he will not be a happy camper because he wants Joshua off the oxycodone like yesterday. Joshua is down to 20 mg. of prednisone every other day and is doing well as far as we can see. We are hoping the swelling in the feet and legs will then be gone and gone for good.

At Connor’s funeral, we saw Jessica, Rebecca, Diego and Jenny, who are either nurses or child life workers at Vanderbilt and who loved and cared for us during our stay at Vanderbilt. A big ‘Hi’ to all of you and keep doing the great job you always do.

Enjoy your fall day. The weather is gorgeous here. Rebecca and I went to Sam’s football game and enjoyed seeing Sam’s team win an outstanding victory. Joshua stayed home and rested up. May you be blessed in your goings and comings and always thank God for everything.

Joy on the journey,
Love,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Monday, November 1, 2004 6:02 PM CST

Dear All,

Connor passed away today in the morning. He made it to his tenth birthday. Sometimes it seems one is given more heartache than is fair. Here is a family with one child and they lose him to cancer. NOT FAIR I say. I read somewhere that life is not fair, but God is still good. I know He will make all wrongs right in heaven. Heaven is a wonderful place, no more crying or sadness. Praise the Lord for that!

I am learning to rejoice with those who are rejoicing and weep with those who weep. I visited the mother of a co-worker of mine, the mother, Betty, had leukemia, (she since has passed away) and was totally out of it when I visited her a few weeks ago except for a few minutes. I bent down to whisper in her ear that God is crazy about her and loves her as I held her hand. I prayed for her and husband and other son both battling there own health problems. So much suffering.... then I walked to the childrens' hospital and rejoiced with my family that our son was celebrating his one year of health since the transplant!

Our doctor called back about the bruising and since it was going away they were not going to 'worry' about it.
Joshua is feeling good today. Yesterday he was SO tired, that I had him stand in the light so I could see if he had color in his cheeks. He had GREAT color. I wonder when a parent stops thinking cancer?

Not to brag on my son, but.. he made all A's on his report card. One class, humanities, is type of college class all lecture. The other classes are Latin 1, literature, and Advanced Analysis for 11th and 12th grades. Joshua is in 10th grade so we are very proud of him for being in the advanced class. Joshua studies everyday and very hard for these classes. The only problem we have is he has not had time for the homeschool classes math and science. We are hoping to move a little in them next week. There is no time left in the day for them especially when he has to get in his naps. I know it will be done and Connor's parents would love to have this problem, that should put all of this in perspective.

Les is to take Sam and Joshua to get the flu shot on Friday. I am somewhat concerned for two of the people I know who got it got sick right after it. We need to avoid throwing up and diarrhea at all cost for Joshua. Even discussing the matter with our doctor they still want him to get the shot. they said one can not get the flu from the shot.

Always remember each day is a gift from the Lord.

Life is something else.. I sure am glad I have Jesus to travel it with.

His joy on this earthly journey,
Love,
LesLie, Les, Rebecca, Sam and Joshua our Champion Warrior

Friday, October 29, 2004 9:48 PM CDT

Hi All,

Joshua and Les went to the foot doctor today. Joshua has three ingrown toenails. The doctor was planning to remove at least one. Joshua forgot to apply the numbing creme overnight and thus the best that could be done was to trim them. This simply means to take the side of the nail that is ingrown and trim it out, thus relieving the pressure.
We hope this will actually be enough and no toenail removal is necessary. Those of you who have been keeping up with us all along, will remember the last time Joshua had a nail removed was VERY painful. One more reason for us to pray the swelling in the legs and feet goes away. They are scheduled to see the foot doctor next Friday.

Yesterday, Joshua showed us a four inch by one and one-half inch bruise on the inside of his foot. I asked if he was having any nosebleeds and he said."no". I thought we would watch it. If it gets bigger we would call Dr. Frangoul. Well, Dr. MacArthur did not like the looks of it and asked for Dr. F. phone number. Dr. Mac. talked to Dr. Rhodes our first Vanderbilt doctor and discussed it with her. She will talk to Dr. F and get back with us.

We may have to go in for a blood test on Monday. The other thing is Joshua did fall and may have sprained his foot without knowing it. Dr. Mac Arthur did some testing on Joshua's feet and found there is not alot of feeling in them.
On a humorous note, a couple of weeks ago Sam and Joshua were sitting across the table from each other, Sam looks at Joshua and said, "Joshua, why do you have your toes on my foot?" Joshua said, "I did not know my toes were on your toes."

Les and I had a wonderful relaxing time in Pigeon Forge. Our cabin was alone and nestled in the mountains. The beautiful autumn leaves were falling at a quick rate and I could see leaves fall off the tree and make their long way downward. It was neat to watch. All was so peaceful. Our cabin felt like home the instant we walked in. It had a great pine smell that took me back to when I was a child and we would go up to northern Wisconsin in the summer. We did not do as much reflecting as we had planned. Mostly relaxed and had lots of plain old fun.
We took a four hour hike into the Smokies. We saw a brown and white owl with a large wing span. My knees were done for and it felt good to get back to the car. We enjoyed a fire every night of our stay. We are hoping to make it there next year. Joshua said "What" when I told him that. He missed us and said it is o.k for us to go when he moves out of the house, but until then, it will have to wait.
Pleasd pray for continued health for Joshua and that this bruise is not a big deal. I bring up the promise we believe God gave us; Joshua 13:l Joshua was old and advanced in years.

Blessings to you all,
Joy on this Journey,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Friday, October 22, 2004 9:25 PM CDT

Hi All,
Les, Sam, Joshua and I all trooped down to the clinic today. We were in and out fairly quickly. ALL of Joshua's tests from last week Friday came back normal! Praise the Lord! I was concerned about the bone density test, but he is in the bell of normal. It was on the low normal side but normal just the same. No leukemia in the marrow. His heart is fine and the skin test came back with just a little GVH, which is good. Remember when there is GVH, it means no leukemia is around. The only concern Dr, Frangoul had was on the lung test. He had a little more than 60 percent usage. It was just a little higher from last year. Dr. Frangoul said he would like it to go up a little more than what it has. His lungs are clear sounding, yet Dr. Frangoul would like us to get an appointment with the lung doctor, just to make sure all is o.k.
Joshua now has a blood type of B positive. He used to be A positive.
His chromosones are 100 percent female, which really means nothing, according to the doctor.

On an interesting note, a male like Joshua, who's chromosones have changed, could commit a crime where there is blood involved, and they would not suspect a man, for it would be woman's blood type that would be at the scene.

We now go to once a month visits. Hip Hip Horray! I asked Dr. Frangoul if he would miss us. He said," The question is will you miss me?"

Joshua is permitted to go down on the prednisone another 10mg. This would bring it to 30mg. If no extra GVH arises, we can continue to lower it every two weeks by 10 mg. If all goes smoothly, we will be off of prednisone in 6 weeks.

We filled out a consent form today. This gives the donor permission to contact us, if she so chooses. We would love to meet her, but it's totally up to her. All we can do is let her know how we feel.

My sweet, big brother, Todd is coming down from Wisconsin, to stay with the kids this next week. Les and I are going on a five day mini honeymoon / vacation to Pigeon Forge. Not so much for all the special attractions, but more for a time of reflection. We found a small cabin all alone in the mountains.

We are thankful to all of you for your faithful prayers. We praise God for Joshua's healing. This has been a long journey, some absolute nightmarish days, but many more good days, filled with enjoying the moment of just being together. We have met many new wonderful people and a good handful I am blessed to call my friends. I love our doctors, nurses and our social workers who in my opinion are the BEST - the cream of the crop!
You all are something else too. So many of you who have stuck by us through it all. You have encouraged and prayed for us. We indeed are a blessed family. Thank-you, Thank-you Lord.

May our Lord's blessing be upon you all,
Thanking the Lord for His joy,
Love and thanks,
LesLie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Monday, October 18, 2004 7:59 PM CDT

Hi All,

Les, Sam, Joshua and I went to the clinic on Friday as planned.
Joshua took all his tests and we should know the results at our next regular doctor visit this coming Friday.

We took pictures of each test and video taped Joshua getting the bone marrow procedure. It was funny to hear him count as he fell asleep. He kept repeating the numbers in the forties. When nurse Becky started to do the procedure he started to yell and moan and try to hit who ever was near him. I hate that part of the procedure because even though he does not remember, I am miserable as his mom seeing the pain he is feeling. When he was coming out and slowly waking up, but still out of it, Joshua was talking about Thomas Chalmers, from his humanities class. Joshua also said, “ They are outnumbered two to one.” Dr. Patel said, “Who is out numbered?” Joshua replied, “The Americans.” All that was video taped and for the most part it will be fun to watch especially with Joshua.

Joshua sat in a wheelchair, for he was not steady on his feet, and we had to quickly make his bone density test. We finished with all the tests around 2:45 P.M. and then wheeled Joshua out to the car. Joshua wanted to go to Taco Bell and he sure filled up since he hadn’t eaten since 6:30 A.M.!

He is a sleepy young man today (Saturday) and is sore from the bone marrow procedure. It hurts him to bend from the waist to pick things up, so we get the things he needs. He is still using his cane around the house and when we go places.

For the last hour the kids have been playing Mickey Mouse Yahtzee. Rebecca found the old childhood game in an old box she was cleaning out. They are enjoying the nostalgic fun. It is pleasing to my heart to see them having fun together .

Please continue to pray for Connor. We now have a link to his web page on our page.

Enjoying our day together,
Continuing in His joy,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Wednesday, October 13, 2004 9:43 AM CDT

Hi Everybody,

Joshua is doing well. He has lots of schoolwork and is studying hard.

Joshua is head usher for the youth at church and is on the adult usher team. It was youth Sunday this past week and Joshua did a fine job directing the other youth ushers. It was fun for me to watch him be a leader. His feet sure hurt after standing for so long. Joshua wanted his friend, Sam, to get him the church wheelchair and wheel him out.

This Friday, the 15th, is the BIG TEST DAY. Joshua is to be at the hospital at 8:30 A.M. He is going to get an echo (heart check), a pulmonary function test, chest x-ray, bone density, eye test and bone marrow test.
We are also able to find out if Joshua's donor wants to meet us.

Joshua continues to lower on the prednisone. He is down to 40mg.now. We are pleased anytime medicines are lowered. Full recovery depends on his ability to progress without them.

We continue to realize how extremely blessed we are to have Joshua with us. Joshua has a nine year old friend, Connor, who is not doing as well as Joshua, and they do not expect him to live. They, like Justin's family, love the Lord. We have Connor's web page link on our main page. Please, check it out and pray for him.

Thank-you for your prayers.
Love in Him.
The Joy of the Lord is our strength!
Leslie, Les, Rebecca, Sam and our champion warrior Joshua

Thursday, October 7, 2004 6:47 AM CDT

0NE YEAR !!!

Hello everyone,
We rejoice in our God and Savior, Jesus Christ. He has done wonderful things.

One year ago this evening, Joshua received his new bone marrow. We like to look at this as his first birthday of his new life.

The doctors continue to be amazed by Joshua's progress. We're not! We're believing a different report.

Thank you to everyone who has been praying for nearly two years for Joshua. We bless you, as you have been a blessing.

REJOICE WITH US TODAY. TO GOD BE ALL THE GLORY!!!

With much love and appreciation,
Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua

Tuesday, October 5, 2004 1:06 AM CDT

Hi All,

Sorry I have not been writing, but our web page was not allowing me to post anything for a week. My hero of a husband took care of the situation and I am ready to roll again.

Joshua continues to do well. We went to the clinic this past Friday and had his blood counts checked and all is fine. Thank- you Lord.
Dr. Frangoul wants us to get off the oxycodone. He is concerned about Joshua getting hooked. Dr. Frangoul wants him to try 500 mg of Tylenol first and go up to 1000 mg if needed and only every other day. For a 1000 mg of Tylenol every day can cause liver damage.
Joshua took 500 mg of Tylenol on Sunday morning and it worked, so he just had one oxycodone at bedtime. One oxy pill instead of the usual two. I'm glad it worked.

Two weeks ago my parents visited us for ten days. We all had a good time together. Joshua and his Papa played chess and glued puzzles onto heavy cardboard to make them into pictures. Joshua and his grandmother, Mimi, worked on vocabulary and humanities which is his history class.

After 30 years with G.M. Les retired from Saturn this past week. I baked 100 chocolate chip cookies for him to take to work for the celebration. The people who he has worked with put up a luncheon for him. They had a fun time.

My brother, Todd, drove down from Wisconsin last Thursday and was with us till Sunday. Todd, Les ,Joshua and Sam went to the Civil War reenactment in our city on Saturday, while Rebecca and I went to a ladies luncheon at our church.

October 7th will be day 365 for the transplant. ONE YEAR! We are so thankful to God for keeping Joshua here with us. We will have a cake and one candle. Les already bought him a present, a Civil War sword and sheath while they were at the reenactment. Joshua has wanted one for so long and now he has one.
Feel free to post to Joshua on this exciting day for all of us. We always enjoy hearing from ALL of you.

Thanks for being here for us in thought and prayer.
His joy on this Journey

LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Sunday, September 26, 2004 4:45 PM CDT

Hi All,

I HATE CANCER!!! What a killer, a stealer and a destroyer!(John 10:10) Doesn't that sound like Satan's dream team?

We went to Justin's funeral. It was a celebration of his life, yet, it was hard for us and the other attendees to really be joyful. Justin had blessed so many with his love for the Lord. Justin's desire to serve his Heavenly Father unconditionally was seen by everyone he was in contact with. He will be sorely missed.

The family put together a little booklet of some of the songs he had written when he was at church camp in 2000. Included in the booklet was a profound thought of his life. It reads as follows, "when you are told you have cancer, you feel as if your life has been taken away from you. You're cured when you realize, it was never really yours to begin with."

Part of the sermon at the funeral was reading exerpts of Justin's journals. One of his penned thoughts was, "Lord, I do not want to seem selfish, but I just want to play golf with my dad, take walks with my mom, play in my band and go to school." When Joshua heard that, there was an instant bond and he just put his head on my shoulder and cried and cried. He knew exactly where Justin was coming from.

Going to Justin's funeral and seeing Joshua walk in with a cane just broke my heart. Without a doubt, I HATE CANCER!!

Lord, I thank you that though death is painful, at least I know Justin is with You. Lord, you're the only one that can see people through this journey with Your joy.

In Him,
LesLie

Thursday, September 23, 2004 5:44 PM CDT

Hi All,

Joshua got his IVIG Wednesday and said he felt alot better after it. It is great to have something to give his immune system a boost. The coughing is almost non-existant. Joshua and Les got the kneehigh support hose. Joshua has been wearing them almost 24 hours and they have lessen the swelling considerable. I can see the ankle bones on both legs now, to bad this was not thought of sooner. Yesterday, he went 25 hours without an oxycodone. These are great things to report to you. Thank-you Lord!

On the flip side of the coin, his appetite has lessened and is experiencing some GVH. I think this is strange since we have not lower on the predisone.

Justin, Joshua's co-hort in the fight against cancer, died this past Monday afternoon. He just turned 18 on Saturday. His web page is, caringbridge.org/tn/jd. He was a stong believer in the Lord as is his whole family. Keep them in your prayers as they go through this time of loss and adjustment.

My parents made it safely to our home and we are having a enjoyable time. Today, my mom and I had a 'girl's day out', and met Rebecca for lunch. Tonight we're all going to watch Sam play football.

Let us all be thankful for ordinary days. Remember to hug your family.

Joy on this earthly journey,
Thanking God for our many blessings.

LesLie, Les, Rebecca, Sam and our Champion Warrior- Joshua

Tuesday, September 21, 2004 7:54 PM CDT

Hi All,

What beautiful weather we are having in Tennessee. It is a joy to dig the weeds and putter outside our home.

Joshua has been studying very hard for school and it is paying off for he is getting all A's so far. It is tiring for him to work so hard though, and takes some good naps.
Today by the time he got home about 5:00. (we had to take one of our cars in to get fixed) he went off to bed - no supper. got up to take some of his pills and went back to bed. He asked me to bring him his 9:00 pills as he will be in bed.

Tommorrow, Joshua along with Les will go to Vanderbilt for the IVIG. After that they will go to Williams Medical Supply for the hose for his legs. Joshau was so funny the last time he went in there, he said it was a Lego store for the sick. He like the pushing scooter, which has a seat on it so you can sit down when you get tired. He saw an umbrella cane, great for those rainy days. Joshua said, "If you really need a cane, this is no good for when you are using it as an umbrella how would you walk?" The store had a heated recliner, "Oh, Mom, I like this!" I had to tell Joshua he is going to get better and WILL NOT need these things.

My parents are coming to visit for a week starting tomorrow. The last time they saw Joshua he was bald, thin, and in the hospital and unable to have visitors in the room.
It will be a joyous reunion.

Oh, yes, last week at Sam's football game Joshua went down by Sam's team and was 'running' to the team. I took a picture. It was fun to see him in a normal situation.

Enjoy your night,
Joy on this Journey,

In His Love,
LesLie

Saturday, September 18, 2004 9:18 PM CDT

Dear All,

Our family just got back from Sam's football game. His team won 14 - 6. Sam, when on defense as a middle linebacker, caught an interception. Everyone was happy!
I took a picture of Les and the boys. We had taken one last year at one of Sam's games. I wanted to take one of them now to see the difference in Joshua.

The bronchitis is trying to hang in there. We called Vanderbilt and talked to one of our doctors. Dr. Mike said as long as there is no fever and Joshua does not have to breath many times while talking, he is o.k. Those symptoms would be signs of pnemonia. They want him outside to get fresh air. That seems to help.

This past week I was reading in a cancer magazine about some kids who relasped four years out or just had more problems than their bodies could handle and died. As a parent of a survivor, I put myself in their shoes and I could feel a spirit of fear sweep over me and I started to think about the 'what if's'. I had to say one of my favorite Bible verses to myself, Is.26:3. "God will keep him in perfect peace who's mind is stayed on Him."
Joshua is healed by Jesus' stripes. Thank-you Lord for your continous healing on Joshua.

Now that so much of this is behind us, I find myself thinking and mulling everything over. Sometimes, I think,"what just happened here?" I think that is why journaling, talking to Les or discussing our situation with someone who has gone through a similar time is beneficial to me. Even talking to a friend who wants to hear more than the average person helps me so much. Just last week, Rebecca and I were discussing the aspects and our feelings of the day we found out Joshua had leukemia.

I am so thankful for all of you prayer warriors who care for us and continue to check up on our happenings.

God's blessings to all of you,

His joy on this journey,
In His Love,
LesLie

Wednesday, September 15, 2004 8:52 PM CDT

Hi All,

This continues to be a whirlwind week.
The congestion he had on Saturday came back after I wrote the last journal. We were up until after 11:00 p.m. trying to loosen it up. Joshua had a sharp pain where he had the lung surgery, which got better with a heating pad. We went to the doctor on Tuesday. Dr. Frangoul said Joshua has bronchitis. It was funny,(I thought is was funny) Joshua said to Dr. Frangoul, "I was really congested till we started to drive to the hospital, now it does not seem that bad." They took x-rays and everything looked fine in the lung area, they were checking for pnemonia. Today our nurse called us and said after his blood work came in they saw his immune system was low
(now we know why he got bronchitis) and he needs to get the IVIG, to build him up again. We have to get it by next week. He is on Levaquin for two weeks.

Great News! Joshua's platelets are 151,000 (which is in the normal range!) Normal is 150,000 - 350,000. He just slid in there. I believe this is the first time since he was diagnosed with leukemia that his platelets are normal.

Today, we went to Vanderbilt to see Dr. Jesus, the neurologist. He said the Benfotiamine,(thiamine )was fine to use for Joshua and the neuropathy. He uses it for older people who are low in this vitiamin. A new medicine, Lyrica, is going to come out in a month and will take the place of Neurontin for nerve pain medicine. He is hoping to get Joshua off the oxycodone with this new medicine. Joshua is to get some support hose since the swelling is still there. He said Joshua is venous imparied. (Which means the veins are not doing their job.) He said the best thing for Joshua is to stay in bed with his legs up. (Of course we know he does not expect us to do that.) We don't think Dr. Frangoul would like that.

Joshua is in bed and is going to school tomorrow. His homework is done and he is all set for a great day tomorrow.
Thanks for checking in,
Joy on the Journey,
Blessing to you all,
LesLie

Monday, September 13, 2004 8:38 PM CDT

Hi All,

Joshua visited the dentist and the foot doctor this morning. Joshua had to take eight Amoxicillin pills an hour before his appointment. The reason for that large amount is Joshua is still on Cyclosporian and this particular medicine supresses the immune system. The dentist appt. was at 7:30 A.M. (which is before it opens to the general public so Joshua would not be around any kids.)

The foot doctor released Joshua! His toe is 100 percent healed. Yea! One less doctor to see, thank-you Lord!

Joshua is not using his cane as much. I do not see him use it around the house at all. Isn't that a great sign? We have been lowering on the Benfotiamine. If you remember from way back, we started it for the neuropathy, hoping it would help. He was up to 12 of these pills a day. He was still using the oxycodone so I decided to lower the Benfotiamine since it did not seem to help. Joshua has noticed more pain in his legs with the lowering of the pills. I will lower the amount again this week and see if the neuropathy pain increases. If it does I will have to up the medicine. I guess it lessens the intensity of the neuropathy. I was hoping for him to be able to give up the oxycodone but I guess he needs both. I am glad he has figured out it helps. I feel better that it is not money down the drain.

Joshua is feeling good. He had a good night sleep on Saturday and woke up feeling fine. Thank-you Lord for being a protective shield around Joshua.

Life is rolling along and I know I am a blessed woman.
I am doing some sewing, cookie making for my family and enjoying having my family around me at home. I am even going to a sign langauge class at church. Rebecca and I do prayer walks around the block in the morning. I am enjoying having my girl in the house again. I love my family, thank-you Lord for this gift.

Have a great night,
Joy on this Journey
In His love ,
Leslie

Saturday, September 11, 2004 5:30 PM CDT

Hi All,
Beautiful day today even if it is on the muggy side.
We were going to see Sam's first football game of the season today but Joshua was feeling a little congested with a headache and has some general tiredness. Joshua napped did some homework napped and cleaned his bathroom.

Joshua wants to go to bed early tonight so he is in good shape tomorrow to usher. He enjoys wearing his usher jacket with the gold nametag. For his ushering, he sits in the back of our church. As they need him for various things they get him and then he attends to the matter at hand. He usually sit with us during the sermon.

He is enjoying school and is keeping up with his homework. He has lots of reading to do and already has a school project with some friends.

I am in a relaxed mode and it feels GOOD. Thank - you God for days of relaxation.
Joy on our Journey,
Love,

LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Thursday, September 9, 2004 9:37 PM CDT

Hi All,
This week has been a whirl of activity.
Joshua has school Tuesday and Thursday - 8:00 a.m. - 2:30 p.m. He drives himself and even Rebecca is impressed. She said, " My little brother is driving to school by himself."
I told her she now had a little feeling of what a mother goes through when learning to let her children grow and go.

Joshua has had two good days of school. He did have extra walking on the first day though when trying to get to the right literature class. He was quite tired by lunch. After school one of his teachers called me and asked how Joshua was doing because she thought he looked so worn out. She said the school wants to work with Joshua to make this a good year for him and if they can help in any way to just let them know.

He was happy to report to me he got a 100 percent on his summer reading test. The summer book he had to read was Shakesphere's "Much Ado About Nothing". He watched the movie,(minus the inappropriate scenes), read the book and listened to the audio version. We'll do whatever it takes to help him learn.

Joshua will normally call me when he is done with school and is ready to drive home. When he comes home he has an hour or two of naptime. As he gets stronger I know the naps will be shortened.

Today, in Joshua's class, a teacher talked about what she overheard Joshua telling a parent at camp who did not know of his situation. Joshua said " I do not know how someone can go through what I am going through without God."
Then another teacher, Mrs. Mahand, told the class Joshua had had cancer and had been out of school for sometime. She happily introduced Joshua to the kids in the 9th - 12th grade humanitites class. Joshua then stood up and all the kids stood up with him and cheered him on.

Next week Joshua has four doctor appointments. Monday he goes to the dentist and poditrist, Wed. the neurologist and Friday the clinic.

He uses the cane a lot. Other than the pain in his legs he is doing GREAT. Thank-you for those prayers for healing.

Joy on this Journey,
Love,
LesLie, Les, Rebeccca,Sam and Joshua our Champion Warrior

Sunday, September 5, 2004 11:02 PM CDT

Hi All,

We are back from camp!(and all in one piece.)
I now can cook for 200 people.(with the help of other ladies) The first day I browned 50 lbs. of meat. I also boiled 240 hotdogs. After doing that, I just could not eat a hotdog. Wonder why... lol (laugh out loud). I met many ladies while living in the camp kitchen. This has given me a start to some new friendships, which I am very pleased about. I found out many of these ladies were praying for Joshua and were happy to connect my face with Joshua's. Some of the ladies who knew him before, were delighted to see him in a healthy condition.

Joshua did as much as he could. Instead of walking from activity to activity, he drove the van from place to place.
The camp director was kind enough to use her golf cart and drive Joshua down the steep hill to the beach area for innnertubing and canoeing. He had a couple of mishaps which included bruising his knee. He dove forward on the 'slip and slide' and smacked his knee which caused him pain in that leg the rest of the camp week.

Joshua played a field game and used his cane to hit the ball instead of his foot and broke the cane. He still had a day to go so he was a limping young man.

It was fun for Joshua to renew old friendships and start new ones. Everyone was quite helpful and considerate to him. Even a 7th grade girl asked how Joshua was doing.

We had him go through the kitchen to get to the food before the other kids so he would not have to stand in line and also to reduce the amount of germs.

All in all camp was a sucess. When Friday came we were both ready to go home. What a surprise was waitng for us. Rebecca made a lasagna meal including salad and dessert. It was a perfect family night. We had the great food, good conversation, then finished the night off with some wonderful prayer.

Joshua's blood pressure is good. Yesterday the bottom number was 64. I am hoping Dr. Frangoul will take Joshua off the blood pressure medicine altogether. We are not dropping any in the predisone during these three weeks. Hopefully he will let Joshua lower the medicine some more after the next doctor visit.

Joshua starts schoool Tuesday. We will let you know how it was for him.

God bless you all,

Joy on this Journey,
In Him,
LesLie

Monday, August 30, 2004 5:36 PM CDT

Hi All,

Hope you all enjoyed the new pictures. (For those of you who did not read the last journal, we just put up new pictures.)

This past Friday we had our clinic visit. We had a great visit. We were told the following things:
Everybody still needs to wash their hands when they come in the house.

Joshua is suppose to wear a mask when in stores so people stay away from him (Joshua said they do already) ha ha..

Not to be in the center of a group of twenty teenagers, which to us means him not playing any of the games during youth group since he would be surrounded by so many teens.
Because Joshua's calves and feet are so swollen, Dr. Frangoul wants to lower Joshua's blood pressure medicine. I had to go and buy a blood pressure monitor. He said to check Joshua's blood pressure every couple of days, (knowing me, I will probably take it every day.) If the bottom number gets above 80 I am to call the doctor. I took it today and it was 121/75. I do not know if lowering the medicine will work for Joshua since the number seems so close to 80 already. We will see.

Dr. Frangoul said "when the flu shot comes out you need to get them." I said, "Joshua?" He said, "No, you and your family". Joshua laughed at that, and later enjoyed teasing Rebecca and Sam with that bit of information.

We were able to see Justin and his mom, Chris, at the clinic. When we were done we went in their room and all of us had a prayer time for the healing of Justin. They are a blessing to us and I am sure to anyone who knows them.

Joshua and I are going to school camp tomorrow. The camp is until Friday. I will go as part of the kitchen crew and be there if Joshua needs me in any way. We are looking forward to a good, "normal life" situation time.

Joy on this Journey,
Leslie

Sunday, August 29, 2004 7:31 PM CDT

Hi All,

O.K. everybody don't faint, we have new pictures of Joshua up. These were taken a month ago. I will write more tommorrow. Don't you all just love his curly hair? For those of you who do not know, Joshua had straight hair before all the chemo.

Nurse Adele.... Joshua is missing you, as we all are, and wants us to meet you somewhere for lunch.

Happy night to all of you,
Joy on this Journey,
LesLie

Tuesday, August 24, 2004 10:31 PM CDT

Dear faithful readers,

I had a great birthday! It was great to be home with my whole family! Thank-you to everybody who sent me cards and signed my guestbook. I enjoyed reading all of them.

Being back at church was awesome! I saw a lot of familiar faces who came to welcome me back to the church. It was a time of reunion with some people I had not even seen for over a year! I am excited with all the new things I will be doing. For example, I am excited about getting back into school, playing drums in the youth band every other week and some time in the future I will be able to share my testimony with my youth group.

I have been doing a lot more driving. Rebecca has competition now when we drive to youth group and band practice. She won't admit it but she knows I am the better driver. LOL (laugh out loud)

We are now lowering on the steroids and I am feeling a little bit more icky than usual, but that is expected until my body adjusts to the lowering of the steroids. I am still having pain in my legs with the nueropathy, and my legs, ankles, and feet are swollen. The swolleness makes it difficult for me to walk. Other than that fact I am doing great.

Please keep Justin, Connor, and Whitney in your prayers. Things have so far not gotten any better for any of them. It looks like Whitney will have to get another cord-transplant because her white count is not getting better. They took x-rays of Justin to find the cancer is spreading in his chest. You can find out more at -
www.caringbridge.org/tn/jd
Connor is having more pain and will be having an all day surgery at the end of this month. You can find more on his website - www.caringbridge.org/tn/connorhunley
Please be praying for all of them and that God would give them each a healing touch.

Thanks for all your prayers and guestbook entries. I appreciate them greatly. God's blessings,
Joshua

Tuesday, August 24, 2004 5:38 PM CDT

Hi All,

Great day on Sunday. Joshua said he will write about it by tommorow. One fun mom note on being at church, during the middle of the sermon Joshua touch my hand and said with a BIG smile, "we're at church."
Joy on this Journey,
LesLie

Wednesday, August 18, 2004 10:35 PM CDT

Hi All,

August 19th is Joshua's birthday. He would love to hear from you if you have the time to send him a happy birthday note on the guest write -in. Last year at this time he was having huge headaches and the neurologist was giving him caffine bolices. This year we are having a family party at home. From a birthday chair, root beer float for a early breakfast treat to Les making a egg breakfast for Joshua. Joshua is looking forward to a great day.

We would like to invite you all to the, 'Welcome Joshua back to church' service.

Make a joyful shout to God, All the earth!
Sing out the His honor of His name.
Make His praise glorious. Say to God, "How awesome are Your works." Psalm 66:1-3a

We would be honored and delighted if you would join our family and attend the 'WELCOME JOSHUA BACK TO CHURCH ' service.
August 22, 2004
New Life Church 10:15 A.M.
6lll Cayce Lane, Columbia, Tennessee

Blessings to you all.
Joy on this Journey,
LesLie, Les, Rebecca, Sam and Joshua,our Champion Warrior

Monday, August 16, 2004 5:31 PM CDT

Hello everybody!

It has been awhile since I journaled last, but I am excited that I get to share what has been going on in my life. I had a great trip down in Texas at Rebecca's graduation. We had a long drive down to Texas. Once we arrived we went to visit Rebecca where I got to meet all of her friends. To be able to put the faces with the names I had been hearing about all year was great. On the day of Rebecca's graduation, my Dad and I had the privilege to meet Ron Luce, the Teen Mania founder and director. I enjoyed the experience.

When I saw my sister walking down the aisle in her uniform I was proud of her. For the first time to me she looked all grown up, a woman of God. Then it hit me, we are not kids playing out in the yard anymore. We are growing up, becoming adults, entering a new phase in our lives.

Traveling home was a lot more unbearable than the drive down. We had all of Rebecca's stuff filling every square-inch of the van. Even though we were cramped we were together as a family and I was most happy about that.

This will be a big week for me. I will be getting back to my normal life again. Playing drums for my youth band, going to youth group and being able to go back to church this Sunday! I have been looking foward to this day for over a year! It will definitely be a day to celebrate. Plus I am turning 17 this Thursday! I am excited with all the plans I have going for myself this week! It will have been the busiest week I have had in a long time.

I have been having some breathing problems lately and still have leg pain. I also, still have swelling in my leg and foot. Please pray that the pain would leave and swelling and breathing problems be gone in Jesus name!

Please be in prayer for Justin and Connor. They still have cancer and the situation for both of them seems to be getting worse. I know it is not God's design that they suffer like this. We must curse this cancer in the name of Jesus and claim their healing.

I will be journaling in a few days from now to let you all know how my week went. I hope you have a blessed week as well.
God's blessing's,

Joshua

Sunday, August 15, 2004 8:22 PM CDT

Hi All,

We had a terrific mini vacation in Texas. Everything went quite smoothly, except some traffic delay going to Texas. The graduation of a total of 499 students started off with the traditional 'Pomp and Circumstance', then we had praise and worship, which really blessed me. The ceremony continued with various speakers such as Ron Luce, the president and founder of Teen Mania, Dave Hasz, the director of the Honor Academy, a member of the board of directors and one of Rebecca's classmates who gave the graduation response. When the graduates were presented they walked across the stage to receive their diploma and then the choir sang a special song. Rebecca had the privelege of being a part of the choir and they all sang beautifully. The graduates were comissioned and their new lives as graduates of the Teen Mania Honor Academy began! I am so glad Rebecca had the opportunity to go to Teen Mania to continue to grow in her faith, learn more on servanthood and make some awesome godly friends. She had a great experience. If you ever want more information about the Honor Academy you can check it out at www.honoracademy.com

Joshus is going to write tomorrrow. Enjoy your night, we are finishing our night off with my homemade chocolate chip cookies, Yum...

Joy on this journey,
LesLie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Tuesday, August 10, 2004 9:38 PM CDT

Hi All,

It has been a good week for Joshua. He went to youth group on Wednesday and out to eat with them. Friday, he went to play the game Risk with some of his friends and slept over at the friend's home. Again, Joshua was able to 'trick' an older friend, Will Orr on who he was. Will was so suprised that 'Brad' was really Joshua, when the boys let him in on the charade.

Joshua had a good doctor visit today. His counts are good and his weight is still stable. Dr. Rhodes, who was our first doctor in Dec '02, checks Joshua out first, then Dr. Frangoul comes in. Dr. Frangoul said Joshua can lower the predisone by another 10 milligrams. We are down to fifty milligrams ever other day. I am so glad, we need to get off the predisone.
We have been invited to a Sounds baseball game, courtesy of the Leukemia Foundation. Les and the boys will go, with Rebecca's and my blessing.

Yes, we are picking up Rebecca this weekend from Texas. Her year at Teen Mania has ended. As Rebecca said, "It is a bittersweet time." She has made such wonderful friends and has learned much about the Lord and what he has in store for her.

This has been some week physically for the Nienows. Les' back has continued to hurt and therefore he is getting an epideral shot on Wednesday. Sam has pulled a groin muscle during football practice and must ice it up 4 - 6 times a day. I decided to get rid of some poison ivy and you guess it, I did not cover myself good enough and am paying the piper with a rash. I also have either a major bug bite or a staph infection. I am waiting for the culture to show which it is. In the meantime The doctor gave me a shot of antibotics and antibotic pills. I am suppose to stay away from cleaning the dishes and the food. Tonight, all three of the men in my life were cleaning up the kitchen. WOW! I am supposed to stay away from them all since I might be contagious. As you can guess none are very happy about it. I am not happy about any of these situations, for after what we have gone through with Joshua, none of these things seem like a big deal. I can't rouse up enough energy to be concerned about any of these problems. We will get better and life will go on.

We have two friends, Connor and Justin who need our prayers. Both have cancer and are not doing well.
Their web sites are caringbridge.org/tn/connorhunley and for Justin, caringbridge.org/tn/jd . I know you probably don't know them but their families are brothers and sisters in the faith. They could use your 'letters' of encourgement on their websites.

On a happier note, WE HAVE NEW PICTURES!!!! Enjoy...

Joshua is coming back to church on August 22. Anyone who would like to come at our 10:15 A.M. service is welcome and we would LOVE to see you there at our service of praise. Our church is New Life Church, located on Cayce Lane in Columbia.

The Lord's blessing on you all,
Joy on this journey,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Wednesday, August 4, 2004 9:34 AM CDT

Hi All,

Joshua had his 16 year old pictures taken this past Tuesday. The photographer, Barrie Taylor, took two rolls of pictures inside her studio and outside in her beautiful park-like yard. The adventure wore Joshua out and he plunked down on my bed and fell fast asleep for a couple of hours.

All in all Joshua is doing fine. He is starting to get into the swing of life once again. Tuesday he drove Sam to meet a friend for a sleepover. It was strange for me to see them both going off to their own activities. After Joshua dropped Sam off, he headed off to drum practice at church. His friend, Chris, is teaching him the drums. Joshua finds he has to hold the sticks a different way because his grip is just not what it should be. He is frustrated with this lack of grip and finds it tough even putting on his socks.

The leg pain is still there and it has not diminished, which is disappointing. We keep praying and looking for different remedies. Joshua asked for prayer concerning his grip that he would regain full power here.

Last Sunday, Joshua and I were talking how he would be going back to church on Sundays, starting on August 22nd. He said, "You know Mom, this being at home went really fast." I found it amazing he thought the time went by so fast.

Tonight, he is going to youth group and sitting in the sound booth with his good friend Sam Carlson.

Thank God for normal days.
Thanks, for checking in.
Joy on this journey,
God's love over you,
LesLie,Les,Rebecca,Sam and Joshua our Champion Warrior

Wednesday, July 28, 2004 9:51 AM CDT

Hi All,

We have a beautiful day in Spring Hill. I even have the windows open, the sound of crickets and the twittering of the birds is heaven to my ears. I hate being closed up with an air conditioner.

Joshua had a great check-up at the eye doctor. We have a praise report of NO cateracts. We know an eight year old boy who after completing one year after the transplant has two cateracts. We know we are indeed blessed.

Now, back-up to Thursday night at the Pfieffer's. We had a prayer time for Joshua. Rubert, as he was praying, said he could see a shield about Joshua. He said Joshua was not to worry about catching every little thing. He was not to be foolish and put himself in 'dangerous situations' but he was not to 'worry' when he was in everyday situations. I believe this was more for me since I am a little nervous about letting him go into the general public. Sometimes I would like to wrap my arms around him and protect him from anything bad that might come his way. Knowing I can't do this, I believe God showed me once again, He, Joshua's Heavenly Daddy, will protect and care for his son, Joshua.

This past Sunday I went to church. (Les and I take turns.) Anyway, the first song's words were, "Thou, O Lord are a shield about me, You're the glory and the lifter of my head."
To me that was a beautiful confirmation of what Rubert said on Thursday. The Lord is the shield about Joshua. Praise the Lord for he had dealt bountifully with us.

Joshua was picked up by his friends for band practice
at church. There were five youth at the practice. Joshua, with the help of his friends was able to trick another friend who had not seen Joshua for more than a year, a girl, named Courtney. They introduced Joshua as Brad. They had the 'scheme' going for about an hour, till Courtney's mother came in and said, "Joshua?" "Hi, Joshua." Courtney, laughed and said, "My mom thinks he is Joshua." Then she looked at Joshua and said, 'Joshua?" and realized they all played a fun trick on her. Everyone had a good laugh when she realized it was Joshua. A side note to this, Courtney has been at our church for eleven years and has been a good friend of Rebecca's for seven years and was still fooled. Another side note, Courtney had told her friend Audra she wouldn't be like Audra and not recognize Joshua the first time she saw him. Oh Well, I guess pride goeth before the fall.

When Joshua came home last night, he sat down at one point and hugged me and said he missed me and wanted to spend some time alone with me tomorrow. Then he proceeded to tell his friend, "I haven't been away from my mom like this since I can remember." (he was gone about seven hours). We talked about how we are used to being with each other 24/7 unless I am working. Joshua and I have always had a strong relationship, this past year and a half has just deepened it. Our deep relationship is another blessing from this situation.

Enjoy your day,
God bless your day and your earthly journey,
Joy on our Journey,
LesLie, Les ,Rebecca, Sam and Joshua, Our Champion Warrior

Friday, July 23, 2004 9:41 PM CDT

Hi All,

We had a wonderful time at Mike and Sisse Pfieffer's home on Thursday. We met Uli and Rupert from England. They along with their three children have been praying for Joshua. Uli just look at Joshua and started crying she was so happy to see him healthy and leukemia free, and with hair.
The date of the eye doctor was changed to this coming Tuesday. Oour foot doctor was happy with the healing of Joshua's toe and our next appointment is in three weeks.

Les is fighting a cold and Sam a sore throat, Joshua said he still feels a little congested. Sometimes, I feel I am in a hospital ward. What will I do with all my time when I am done running them to the doctor or getting perscriptions filled or figuring out what insurance pays and what we pay. Let us not forget the countless phone calls that go along with these activities. I just praise the Lord I am not sick . My dad always said he wuld rather spend money on healthy food than doctor bills.( I agree, Dad)

Blessing of health on you all,
Joy on this earthly journey,

LesLie, Les, Rebecca, Sam Joshua, Our Champion Hero

Wednesday, July 21, 2004 9:47 AM CDT

Hi All,

Today Joshua is feeling good enough to do homework, this is always a good sign things are on the way up.

Monday was a couch day for Joshua until the evening when we played a game of cards.
Tuesday was a four hour long day at the clinic. After his blood was drawn for counts, they put an IV in him for the IG, which is the immune building blocks for his system. Our bodies produce this on its own and Joshua's will in time.
Joshua has not done well with the IV insertions lately and needed orange juice because he was feeling faint and dizzy.
When they started the IVIG he was getting short of breath and felt like he was wheezing. they slowed down the IVIG and brought him an inhaler to relax his breathing and open up his breathing tubes. Then, he laid there with a wet cloth over his eyes. Towards the end of this two-hour process he started to feel better.

The doctor visit part of the clinic went smoothly. They were glad Joshua had fought off the virus. We know it was a virus and not a bacterial infection for bacaterial infections will show up in the blood count numbers while a virus will show no change in them.

We are able to lower the Predisone by 10 mg. which means we will be at 60mg. every other day. I am VERY happy about that since long term use destroys the bones and Joshua is already telling us that his spine and knee joints hurt.

We see the eye doctor and foot doctor on Friday. Will write on Friday.

Thanks for checking in, we are thankful for all of you.

Joy on this journey,
God's Blessings,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Monday, July 19, 2004 8:21 AM CDT

Hi All,

For those of you who have not check in for a while I journaled two times yesterday.

God has answered our prayers "Yes". Joshua's temperature is 97.3! He still has all the other symptoms,so continue to pray that these would leave. Tomorrow we have a scheduled doctor appointment unless he runs a big fever today we will wait till tomorrow for the doctor. Joshua said," I just wants to rest today."

God's grace is sufficent,
Joy on this Journey,

God's love and ours,
LesLie

Sunday, July 18, 2004 9:30 PM CDT

Hi All,

This is the second journal of the day.

Joshua has a fever of 100.5. It most likely is higher since he is taking predisone, which helps keep fevers at bay. He is very cold even with blankets and wearing a sweater. Joshua's throat still hurts and his nose is stuffy yet runny. His eyes have a sick look to them.

I called Vanderbilt just to see what we have to do. We were told we could come to Emergency now or wait till the temp. is 101.00 and they would give him a dose of antibotics and have us see Dr. Frangoul on Monday. We decided to wait and watch him. We were told to give him Sudefed to dry the nose and see if the throat pain would go away. If it does not it most likely is viral I was told.
Good News.... most likely we would not have to stay in the hospital since his blood counts are good.

Please continue to pray the fever goes down.
Thank- you We love you all,

Joy on this journey,
LesLie

Sunday, July 18, 2004 12:03 AM CDT

Hi All,

Joshua had four friends over for an early birthday party. They had a great boy's time! Joshua pulled out the waterguns, from the super soaker to the mid-size style.
Sam even got out the garden hose and they all had a 'blast'(notice the cute play on words). The dinner was Joshua's choice, chicken fingers with mac/cheese. Yes, I cut up some vegetables for the dinner. We rounded off the night with ice cream and Joshua's favorite cake, Wacky cake with cream cheese frosting which had chocolate chips strewed on it.

They enjoyed sleeping out in the tent and played the next day away. Les, Joshua, and Sam, (Joshua's great caddie), along with Dale and Tyler Hardee went golfing. It was a small course with no carts and Joshua was one worn out young man when he came home.

Well, along with this fun Joshua has a painful sore throat with a runny nose. Once again he is on the couch with two blankets. He said he is cold. He does not have a high temperature though. Could you agree with us in prayer that Joshua would NOT get a fever, and would get over this quickly. If he gets a fever it will be an extra trip to the doctor and maybe a stay at the hospital.

I cooked up some antibotic free chicken and made soup with the meat and broth. I used whole wheat noodles,organic carrots, corn, peas, some thyme and one garlic clove to finish off the soup. Hopefully he will be able to enjoy some of it.

In case you are wondering, I am doing fine. I am not stressed out and know God is in control. I am living on God's daily grace for today.

God is Good all the time.
Living in His joy on this journey,
His Love,
LesLie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Wednesday, July 14, 2004 6:43 PM CDT

Hi All,
Joshua had a great day yesterday. The big news is Joshua went 24 hours without an Oxycodone. Thank-you God!

He and Sam each had a friend overnight. They all enjoyed the 'Lord of the Rings' Risk game and saber fighting 'Lord of the Rings' style. Les and I went out and brought home some take-out pizza. The boys had a regular, NORMAL, fun night with friends. I was happy for Joshua and Sam both.

This past Tuesday was the first day Joshua could soak his toe with no pain.

Yesterday, Joshua told me he did some running on the grass. Next year he said he would like to play football, track and get back to swimming. Wouldn't that be teriffic? We will have to pick only one sport so school work won't suffer. It is exciting to look ahead, but we are living one day at a time.

Joy on this daily journey,

LesLie, Les, Rebecca, Sam and Joshua our Champion Warrior

Monday, July 12, 2004 6:24 PM CDT

Hi All,
I know it has been a while since I have journaled. Here is the news.
Les said he felt back to normal on Saturday. He is at the doctor now just to make sure all is o.k. Joshua had a couple more bad days with the nailless toe but is doing better on that front now. Dr. MacArthur said it will take 4 to 5 weeks to totally heal. He also told Les only 3 -5 percent of the people he has seen has experienced the pain Joshua has had with his toe. Most do not even need a pain killer much less Oxycodone. He believes Joshua's body just can not handle any more pain. Our Vanderbilt doctors have said the same thing. I guess after being in so much pain as Joshua has been his body just reacts off the wall to any pain.
Joshua has been able to do homework this week, which I am always glad about. We were out and about yesterday and he seems to be paying the price today with naps. Joshua started out the morning with nausea and naps to about 1:30. He just kept saying he was tired. About 4:00 he started to perk up, so we should have a goodnight. We are planning a night of family card playing, shouldn't be too strenuous way to end a night.
I am relearning to concentrate on each day itself. Not to look ahead, because I know God's grace is sufficent for today. I am doing much better emotionally this week than last. Les being sick last week just about put me over the edge. I was at the point of wanting a vacation from sickness, doctors and pills. I thank the Lord, Les is healthy and I feel revived and full of new energy to meet each day. Again, I am thankful to the Lord, for His mercy endurth forever!

Joy on this Journey,

LesLie,Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Wednesday, July 7, 2004 9:27 PM CDT

Hi All,

Yesterday, was spent at doctor's offices. I dropped Les off at his doctor. (Now you know he was sick if he let me drive him.) Then,I took Joshua to the foot doctor. He set up Joshua for an appointment, today,Wednesday, for the removal of the sides of his big toenail, because it was now reinfected, this time on both sides.
Our foot doctor gave Joshua some numbing creme to put on six hours prior to giving him the four numbing shots in his big toe.
The first two shots were not too bad, but by the time he got the last two he was not a happy camper. When the toe became numb, Dr. MacArthur just went under the nail and dug out the sides. The second side was so loose that the whole nail came off. I could hardly look, but curiousity got the best of me and I checked it out and it was 'yucky looking'. Joshua did o.k. until he had to soak it tonight. He was in extremely excruciating pain, holding tightly onto Sam's arm and crying. I get so worn out seeing Joshua in pain. When will it end? We gave him pain medicine a little earlier than prescribed so there would be a little overlapping of the medicine, meaning less pain to our Champion Warrior. As we took his foot out of water the pain increased. We put some numbing creme on along with healing ointment, and kept praying and praying. Rebecca was able to join in on the phone with her prayers.
His toe is wrapped up and doing o.k. now. We are distracting him with a historical golf movie, something, we would do at the hospital when the pain would get bad. Sometimes one just needs a distraction.
This nail will grow back in about four months. Hopefully the neuropathy is gone or greatly lessened. This would mean less pressure to the toe and hopefully we are done with ingrown toenails.

Looking forward to doctor free days. Yet, I thank God we have them, what a blessing they have been to our family.

Keeping His joy on this journey,
Love,
LesLie,Les, Rebecca,Sam and Joshua, Our Champion Warrior

Monday, July 5, 2004 9:20 PM CDT

Hi All,

We had a fabulous, fun-filled, Fourth of July. Les and Joshua were feeling much better. We had some friends over, Dale and Debbie Hardee with their two children, Tyler and Allison. Tyler, is right in the middle of Joshua and Sam age-wise and they all enjoy each other's company. Dale and Debbie brought over fireworks and the boys sure enjoyed them along with sparklers. The boys caught frogs and even gave them names, such as Fred(only one I can remember)then put them in a bucket with grass and water. I was SO happy to see Joshua out and about enjoying himself so. Last year we celebrated the Fourth in the hospital. I think Joshua will tell you this was much better.

Today, Joshua's leg swelled up so that the ankle was as big as his knee and the skin was so taut Joshua felt like it was going to split. His foot was so painful to walk on that he was using crutches that we had in the attic. I do not know if I will, but I am thinking about a cane for these times. Personally I would perfer to have him healed in Jesus' name of this neuropathy.

Les is also back to feeling sick again and is on the couch sleeping. He thought he was over this after feeling good yesterday. These bodies of ours! I am glad to know the bodies we receive in heaven WILL NOT wear out. Thank- you God:)
In the meantime we covet your prayers for health in this family. Thank- you once again for your faithfulness in praying for our family.

Giving thanks in ALL circumstances,
Joy on this Journey,
Love,
LesLie,Les,Rebecca,Sam and Joshua , Our Champion Warrior

Saturday, July 3, 2004 5:07 PM CDT

Hi All,

These last couple of days have been something. Les has been sick with a stomach virus since Thursday. He slept for about twelve hours and then off and on slept for another twelve.
He felt so sick that just to sit up made him nauseous and dizzy. Having sharp stomach pains and a fever did not help. He now has more understanding of how Joshua felt in the hospital day after day. Joshua has had stomach problems off and on since early this week. I wonder if they are fighting the same thing.

I forgot to mention some other things from the clinic visit. Dr. Frangoul said, "No" to the light rays. He does not know much about it and does not want Joshua to be in the light for he fears it will bring up GVH, like the sun would. Oh well, I tried. Joshua will also need the IVIG to boost his immune system on our next visit to clinic. Joshua is NOT looking forward to the IV.
A friend of mine thought we were done with the GVH. Let me explain, the Predisone is keeping the GVH at bay. Some kids get off Predisone easily. Others, when they try to get off the Predisone, have some GVH problems. We will see what happens with Joshua. At about the year date they will try to get Joshua off as many medications as possible. He has twelve medications plus the pain med. Many of the meds feed off of one another other. Get off of one means to get off another.
Having Les and Joshua both feeling ill at the same time was not a lot of fun and I am READY to have a healthy household and think about some other things other than getting people healthy. In the meantime, I rejoice that I have my family, sick or not.
Thanking God for my family and that we are home on this fourth of July and not in the hospital.

Enjoy your fourth and your freedoms.

Joy on this journey,
God's love and ours,
LesLie,Les,Rebecca,Sam and Joshua, Our Champion Warrior

Tuesday, June 29, 2004 6:33 PM CDT

Hi All,

The doctor visit was a good one. We discussed all sorts of things. For Joshua ,all his counts were good. The white count was a pinch high and they believe Joshua was fighting off a bug, yesterday, which got the GVH going.
Joshua is allowed to go to the store in the afternoon, he just needs to wear a mask. this is something we have gotton away from. Dr. Frangoul said," not that it in itself protects you , but people seem to shy away from someone wearing a mask.

As long as someone is not sick he can hug them. He must continue to stay out of the sun during the peak hours and after those hours if he wants to go out wear LOTS of sunscreen. The 22nd of August is the target date for his first day back in church. He will also be able to go to school when it starts.

Dr.Frangoul said these next couple months are important in keeping Joshua healthy,for if he gets sick it would be a setback. We do have to make an ophthalmologist appointment, Joshua is having problems seeing in the dark while watching a movie. We want to rule our the possibility of cateracts. which usually develop between three and five years after the transplant.

We were given permission for Joshua to attend Rebecca'a graduation from Teen Mania,on August 14th.

We are getting back in the world and it is strange for me, for our way of life seems normal to me.

Joy on this Journey,
His Love,

LesLie,Les, Rebecca,Sam and Joshua, Our Champion Warrior

Tuesday, June 29, 2004 8:47 AM CDT

Hi All,

After a good night sleep Joshua is feeling much better. All that is left is a slight headache and the infamous leg pain.
Joshua said he feels good enough to drive us to Vanderbilt.
Let you all know later how the doctor visit went.

Thank-you for your prayers,
His joy on this journey,
In His love, LesLie

Monday, June 28, 2004 12:28 AM CDT

Hi All,

Joshua has had a wonderful week.( We are not counting the chronic leg pain). Les, (Yes, he is home, Hooray!)Sam,and Joshua, went to a three par golf course. Sam, was Joshua's caddie, and did a fine job at that. Over this past week, our church family, lost to cancer, a kind and generous man, Frank Benefield. He was diagnosed in June'03 the same time Joshua relasped. In June of '03, they both had lung surgery to remove the lower left lobe and always wanted to get together to discuss the 'war wounds'.
Frank leaves behind many loved ones including his wife,Susie, his 18 year old son,Miles, and,Courtney, his 15 year old daughter. Keep them in your prayers during this time of upheavel in their lives.

Today, Joshua,is having some heavy duty graft verses host. Remember, this is his body fighting the donor's marrow. Right now, he has the garbage can by his side in case of throwing up for he is very nauseated. He doubled up on Benadryl pills in hope it would relieve the symptoms of GVH. They have not so far. Along with being nauseated he has a headache. Right now he is sitting up on the couch with legs up and a heating pad on his stomach while watching National Geographic. Tomorrow we will see the doctor so we will see if anything is up.

Pray for relief from the GVH.
Thanks, for checking in on Joshua,
His joy on this Journey,
Love, LesLie

Wednesday, June 23, 2004 8:54 PM CDT

Hi All,

Joshua had a better day today. Only one Oxycodone:)

We went to the foot doctor today. Dr. MacArthur said Joshua's toe looks fine and he is discharging Joshua as a patient. Dr. MacArthur and Dr. Frangoul talked about the light ray treatment. I need to bring the blurb about it to Dr. Frangoul on June 28th, our next doctor visit. Since it is a new procedure and on neuropathy, Dr. Frangoul does not know to much about it. It sounds like it will take a couple of weeks to get an answer.

On some days Joshua's hand grip still gives out on him which means he is literally done with writing for the day.

For fun, we (Sam, Joshua and I)were practicing holding our breath. I told them how my dad could hold his breath at one time for 2 minutes 15 seconds. I went first and was glad to get one minute and five seconds. Sam came in at one minute, and happy about that. Then, Joshua, zoomed past us both at one minute and forty seconds! So much for feeling sorry for him that he had lung surgery.

Les is now at a Dave Ramsey counselor training class till Saturday. I will tell you all, it will be great to have him back at home, between Texas and this it will be two weeks since he has been home.

Blessing on you all,
Joy on this journey,

LesLie,Les,Rebecca,Sam,and Joshua,Our Champion Warrior

Oh Well, Joshua just took another Oxycodone. Keep praying for an Oxycodone free day. Thanks!

Monday, June 21, 2004 4:41 PM CDT

Hi All,

We have continued prayer request for Joshua to have freedom from this leg pain. We are both a little frustrated concerning this, I just feel like crying when I see him in continued pain over this issue. Last week he was crying because his legs hurt, yet he did not want to take the Oxycodone. We pray for relief, yet it did not come.
The Bible says if I have the faith of a mustard seed I can move mountains. I guess I still have a way to go to get to that puny size. O Lord, increase my faith and grow it to a mustard seed. I want to see Joshua free from pain so he can feel like a normal 16 year old young man.

Thank-you for joining in prayer with me.
Leaning on Jesus' joy and strength on this journey,

In Him,
Leslie

Friday, June 18, 2004 10:29 AM CDT

Hi All,

Joshua and I are enjoying our week together from working to just being with each other. We watched the movie,'Driving Miss Daisy'. This movie is 'our movie' that we watch together once a year.

Well, Joshua had an ingrown toenail on the puffy foot. After a double dose of antibotics I took him to see Dr. MacArthur, our poditrist. He is the doctor who we went to see in 2002 for the bruising on Joshua's feet. He was SO delighted to see Joshua and SO blest to see Joshua looking good.

Dr. MacArthur removed the ingrown part of the toenail and still saved the root. As he removed it, Joshua was holding his breath and gripping the the arm of the chair because it hurt so badly. As I was praying and looking at him, I thought he was going to explode with pain, but he made no sound. Our doctor said he could give him a shot but it would hurt as much as what he is doing to the toe. After the 'mini surgery', the doctor doused the toe with benadine and then literally poured a 16oz bottle of alcohol on the toe. He was taking no chance for an infection to set in. I asked Joshua, if he was feeling the alcohol and he told me no. The doctor and I look at each other puzzled. I knew each of us were thinking, why would he not feel it? Then, all of a sudden Joshua's nerves swung into action and he said in a pained voice. "I feel it".
Joshua must soak it three times a day and see the doctor in a week.

Dr. MacArthur told us there is something new to lessen the leg pain Joshua is having. The FDA has just cleared a system that increases local circulation and reduces pain. It is called Anodyne Light Therapy. Those who benefit are those with neuropathy and peripheral vascular disease. it does not hurt and takes 30-40 minutes per treatment, 12-15 treatments in a one month time. The great part is, it is suppose to greatly lessen the pain in Joshua's legs for at least eight months! The down side is if you have cancer you cannot go through it; because it messes with your red blood cells. Now we all know Joshua IS cancer free but we do not know if we want Joshua's red cells messed with. Our foot doctor and Dr.Frangoul will discuss the situation this coming week. I really am hoping and praying it is a go. We are still waiting for the thiamine to work, this is the week we should notice some change. The pain Joshua has, has increased as he walks more. The other foot regularly gets swollen now too. The last two nights I have massaged Joshua's legs and feet in hopes that they would feel better. I told Joshua I will do his running up the stairs today to lessen his walking in hopes that the pain lessens which means less Oxycodone ~:-)

Thanks for taking the time to read this update and praying for Joshua. You all are a blessing to us. God's blessings to you.

Joy on this journey,

His love and ours,

LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Monday, June 14, 2004 9:01 PM CDT

Hi All,

Joshua took me out for a 'date' today. We went to the Atlanta Bread Company for our meal and Shakes for chocolate ice-cream cones. Joshua drove me and paid for everything.
We did some shopping and he was happy to be done walking when we got home.

Last week we had an eleven o'clock doctor appointment. We were out by eleven-thirty! I believe that should make it in the history books for being so quick. We did not even have to stay for the blood results. They said they would call if something was wrong. No phone call, and we were happy about that.
Joshua is holding his weight at 154 pounds. He eats two good meals a day. His temp was 93.3, the nurse retook it and it showed the same temp. Joshua does not feel cold so who knows what is up with that.

I called up the supplier for the synthetic thiamine, which Johua is taking for the neuropathy. I was told in the fifth week he should notice some change in his legs as far as pain is concerned. I pray this does its job with Joshua; he has started to take the oxycodone every day and sometimes more.

Les and Sam went to visit Rebecca this week. Sam is staying at Teen Mania learning about missions and will be taught the importance of missions and do some mission work around Tyler, a city close by the Teen Mania campus. Les went on to Austin to visit his family and attend his nephew's wedding. I think it's pretty neat that it all worked out at the same time, Sam's mission trip and the wedding.

Joshua said he is glad to have time alone with me so we can 'bond'. I believe he is still so used to having me glued to him at the hospital and misses that time alone with me. We are enjoying just being together and having hang out time with each other.

Joy on this journey,
Love in Him,
Leslie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

For those of you who want to keep up with Connor a precious nine year old- his web site is caringbridge.org/tn/connorhunley

They have not been told good news. Agree with us; by His stripes Connor is healed. Amen and Amen!

Friday, June 11, 2004 12:40 AM CDT

PRECIOUS IN THE SIGHT OF THE LORD IS THE DEATH OF HIS SAINTS. Psalm 116:15

This journal is in honor of my Aunt Marion who past into Glory this Monday June 7 th at 6:03P.M.CST

It was just before Easter we received the call letting us know that my Aunt Marion who was dying of bone and liver cancer,had perhaps hours, at most days left on this earth. At my request, Les, had just made round trip reservations to Milwaukee to spend some much desired time with my special aunt. Les and I prayed "please Lord, if you will, could you please sustain Aunt Marion so I could see her again and have the opportunity to love on her". She was doing great for her when the day came two weeks ago to go be with her. Thank you Jesus.
Before I left I remember telling my family I am going as a servant. Little did I know what spiritual and emotional joy it would bring to me.

I served her with countless glasses of ice water, made up dainty sized meals on her beautiful dishes, and I helped her up from the couch and held her from behind as she practically crawled up the stairs to her antique bed each night. I also cut what was left of her hair (about 400 strands). Oh, yes, Aunt Marion had to check it in the mirror for the final o.k. I planted a plant for her and dug some weeds as she sat in the delightful sunshine.

My brother, Todd, took Aunt Marion and I out to a German restaurant. She ate a little and enjoyed the strawberries the most. We three also enjoyed a rainy night with a real fire and lovely relaxing music. Aunt Marion said, "I feel as if I am at the gates of heaven."
We were SO happy we could bless her with love, security and comfort.

Aunt marion and I read Bible excerpts from Psalms to Hebrews. I prayed for her when she was in pain. We talked of heaven and of her being able to see her deceased husband, Joe, and her parents.

I packed two of my teacups; one of them I had found while antiqing with my aunt. Aunt Marion and I enjoyed a 'tea party' in bed complete with her wearing a 'tea hat' I had brought from home.

We laid on her bed and held hands while we reminiscenced of enjoyable times we had shared together. When I would laugh about something she would say how she enjoyed my laugh. We also cried together when she asked if I would cry when she was gone. I was able to tell her how much I loved her and we shared some endearing conversation.

It was a honor to help her with her personal needs. I held her when she hurt and cried when I could not ease the pain she was having. When I washed her and massaged her feet I thought of the woman who washed Jesus' feet with her perfume and tears. Just like Jesus told the Pharisees, "she is preparing Me for My burial," I felt as if I was preparing My Aunt Marion for her burial. I could see touch was so important to her. Just sitting next to her relaxed and comforted her.

There is so much to learn from attending to the needs of the dying Christian. Even as she lay in bed unable to do anything, my Aunt Marion was teaching me. I again learned how to think of others more important than myself. As we bless others, we become blessed; a lovely circle of God's love. I picked up more patience, and again (had this with Joshua) relearned how to die to my earthly desires while attending to hers. My aunt did not complain. She had said she had thought about Joshua and all he went through and felt he had it much harder than she. She is a champion warrior in my book.

When my vist was over and I loving on her for the last earthly time I put my hand on her head and blest her, saying, "May the Lord bless you and keep you. May the Lord make His face shine upon you and be gracious unto you. May the Lord lift his countenance upon you and give you His peace that passes all understanding. Then a kiss and a smile from her.

To the best of my abilities, I wanted to travel this road with her, even if it was only for five short days.

As I said before,I believe there is much to be learned from the dying Christian. Things we can't learn from afar but in the trenches with them as they walk this road to home. In giving of myself I was blessed beyond measure and learned when you give your life away to the glory of God, God returns it back to you abundantly. I never want to forgot all that I learned. The love that was shared during those five days was the crowning point to our relationship.

If you are ever given the opportunity to serve in this manner, I pray you take it and may you grow and be richly blessed.

Joy on this earthly journey which leads to our heavenly home.

God's blessings on you all,
Love, LesLie

Wednesday, June 9, 2004 10:32 AM CDT

Prayer Warriors are needed to pray for a 9 year old friend of ours ( met in the hospital) who had relapsed last month.
This is the third time for the pelvic cancer to come back.
They are giving him a MRI today at 12:00 noon CST and ask all who can to pray for the cancer to be a no show and gone in the healing name of Jesus.. His name is Connor and his parents are Rhonda and Eddie. This is thir only child.
We pray in the Mighty name of Jesus healing to Connor's pelvic region.

Even if you get this late please pray for them. this comes on the heels of just finding out the little 4 year old, Andrew Pierce, who had brain cancer passed away a couple of weeks ago. His parents said before he died it sounded like he was talking to Jesus. Andrew had a nine year old sister. They also need our prayers

In the healing name of Jesus,
Leslie

Monday, June 7, 2004 2:47 PM CDT

Hi All,

Joshua had a busy weekend. Saturday, he and Sam slept overnight at a friend's home. Sunday, Joshua went golfing at a par three course. He had to walk and had pain when he came home, he feels better today though. Because the golf course was a little par three course with only nine holes it did not have golf carts.

Mrs. Lynn, Joshua's tutor, in English and alegbra came today. They had a hour a half class today. I guess the class and the weekend wiped Joshua out since he has been napping for over two hours today and still going strong.

I am so thankful to have a friend proficent in these two subjects since I am somewhat weak in them.

Tomorrow we go to the doctor, I will let you know what we hear. Tomorrow will be one year since we were told Joshua had relasped.

Yesterday, Sam and I went to our church picnic. I told Sam he could go where he wants provided he is with a friend.
During supper a friend of ours noticed he did not see Sam. I saw all his friends and none of them had seen Sam. I checked every where from the playground to the volleyball area to the boy's bathroom and finally the pond area, no Sam.
I prayed and kept looking. One of Joshua's friends asked what is wrong and I just started to cry, saying, "I can't find Sam." He said he would help. I just felt overwelmed and weary. All that has happened to Joshua and now I cannot find my Sam.
Sam's 'regular' friends found him playing at a playground across the pond with younger church kids than he. Thank-you Lord.

I guess there are deep emotions still in me about all that we have gone through with Joshua. I would not have known about those feelings had Sam not been 'lost to me'. I was worn out emotionally after that.

Even though things do not work out as we plan or think they should, we can always choose to have His joy on this earthly journey.

Sam just came in with the mail and said, "another bill".
I realized that is good because that means, Joshua is with us.

Blessings to you all,
In His Love

Leslie,Les,Rebecca,Sam, and Joshua Our Champion Warrior

Saturday, June 5, 2004 10:48 AM CDT

Hi All,

Last night went well for Joshua. He took some pain medicine and elevated his foot. This morning, his foot looked just fine, as far as the bite was concerned, all the swelling gone. Now, if the neuropathy swelling would go down we would be 'cooking'.

Thanks for your prayers and your time in reading the journals.

God Bless,
Joy on this journey,

Leslie

Friday, June 4, 2004 5:07 PM CDT

Hi All,

Joshua was practicing golf, as he was coming towards the house he was stung by a bee or bit by a spider on the foot that is already puffy from the neuropathy. Needless to say he is in pain. So, we have his foot elevated and on ice, doctor's orders. We are to call if the swelling does not go down or it looks like infection has set in. The doctor said treat it like we would treat a sting in us.

We would be pleased if you agree with us in prayer there would be no infection and the pain would lessen. Thanks,we are so glad we have you all.

His joy on this journey
Love, LesLie

Wednesday, June 2, 2004 2:38 PM CDT

Hi All,

This has been a week. Sorry you have not heard from us.
I went to Wisconsin to be with with my Aunt Marion who has been battling liver and bone cancer for the past three years. Unless God does a miracle, she does not have long on this earth to live. It was one of the best weeks of my life! I am SO glad God allowed me to stay at her home and serve her. I will write more about it on the next journal, for I am still putting all my thoughts together on my stay with her.

As Rebecca and I were out of the home, it was Boy's Weekend at the Nienows. Golf, movies, Sam had a friend over and Joshua had a friend over to watch Lord of the Rings, Return of the King. There was popcorn, soda, pizza and ice cream. Needless to say,they had a good play time.

This past week, Joshua went 36 hours without an Oxycodone pill:) I could not tell you when that last happened, maybe September. Needless to say I was one delighted Mama:)
A couple times this week he went 24 hours with out the pain pill. Most recently, today he went 26 hours before taking another pill. So, keep praying this vitamin does what it is suppose to concerning neuropathy.

On Tuesday while Les was working ans Mama was flying back home, Joshua and Sam were cleaning up the house for my welcome home surprise.
Joshua did 'pay the piper' for that wonderful cleaning, for his right leg was so swollen that he could feel his skin stretching. The skin had no pliability. It was like having a balloon filled so much and one more drop would pop open the balloon.
I told Joshua, Sam and I would be his servants on Wednesday and he was to keep his leg up. Joshua smiling, replied, "I will tell Sam he will be my slave." The fun of having a little brother...This morning the leg looked much better. I guess he can not be on that leg that much yet.

Continuing to have growth and joy on this journey,
With much praise and thanks to our Heavenly Daddy for all He had brought us through.
In His Boundless Love,
LesLie,Les, Rebecca, Sam and Joshua, Our Champion Warrior

Monday, May 24, 2004 8:51 PM CDT

Hi All,

Today was much better than Saturday and Sunday. It started out a little slow but by the afternoon he seemed to have got the kinks out him and felt better. Joshua's chief prayer requests are the legs and back pain; sometimes it hurts when he breathes, sometimes the spine hurts and sometimes the whole back just aches. Other than that he is doing just great.

School is coming along well. We are studying the 1940's,
and are watching actual newsreels footage from the time period. We think it is very interesting.

Joshua's hair is quit curly and for fun he is thinking of growing an afro, won't that be a hoot?

Joy on this journey,
Love,

LesLie,Les,Rebecca,Sam,and Joshua, Our Champion Warrior

Sunday, May 23, 2004 10:59 AM CDT

Hi All,
It is a beautiful Sunday in Spring Hill. Blue sky, cheerful flowers and a rocking chair to enjoy both.

Wednesday thru Friday Joshua felt good. On Saturday, his body just hurt all over. Back pain where the lung surgery was, spine pain, nausea and a little cramping. He even wanted heavy covers while he napped, and we do not have the air on yet. He also felt a sore throat coming on.
It was a slow day as you can see. He was hoping after transplant things would just keep on gettng better and better and he would not have days likes this. Towards evening he was feeling better. Thank-you Lord.

Sunday, Joshua got up for breakfast and then went back to bed by 9:00 A.M. and is still in bed as I write. Well, when one sleeps ones body can heal so I will take this as a good sign.

We are getting off the Trileptal, for it makes Joshua dizzy. Besides, he is still taking the Oxycodone, and it was suppose to work where Joshua did not need any more Oxycodone.

We started the Thiamine treatment I plan on giving it six weeks to work. Pray along with me that it does and he will not need the Oxycodone any more.

No matter what goes on. I know God is in control and because of that I can have His joy on this Journey.

Blessing to you all,
Love,
LesLie, Les, Rebecca, Sam and Joshua,Our Champion Warrior

Wednesday, May 19, 2004 1:19 PM CDT

Hi Everyone,

All sorts of good news today. Very, very first of all,
JOSHUA HAS A REGULAR DRIVERS LICENSE!! He passed on the first try and is very excited about that.

Our next news is, DRUM ROLL PLEASE... we now will see Dr. Frangoul every three weeks instead of the two. Dr Frangoul said, "Unless you miss us too much and want to visit us in between appointments." To which I replied, " Or, we might have to come back earlier if you all miss us."

Our doctor o.ked us for the new calcium pills and the liquid B1 vitamin for the neuropathy. Though he does not put much stock in the B1 vitamin for neuropathy. We will give it a try, for we are taking three medicines now that are not really helping so this can not hurt and maybe with God's blessings on this B1 it will help to where we can lesson some of the medicines. The Trileptal is going ok. but he still needs the oxycodone. The world of pills, some times one just has to throw up their hands and wonder.

Joshua has just sold his first item on E-Bay, an old Lego set and is very happy to have found a way to make money while he must be at home. I have hired Joshua to sell some things for me and I give him ten percent which works out quite nicely for him and me for I do not have to mess with it.

We were out all day yesterday with the Dr. appt. and Joshua is napping now. Besides the leg pain and little pains here and there Joshua is doing wonderfully. I thank Our God for blessing Joshua with continued health. Each day is a gift from God and I never want to forget that.

Enjoy your loved ones. Thank- you for your continued prayers and checking up on us.

Joy on this Journey,
Leslie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Friday, May 14, 2004 9:35 PM CDT

Hi All,
Good visit with Doctor Moore, the lung doctor.
He checked out Joshua's breathing with the stethoscope and said he sounded fine. Joshua then went in for a breath test.
He was given a clear plastic clip to hold for his nose and then was told to breath in and deep as possible then blow out into a machine until all air was expelled. This was done three different times. The testing came back promising for him.

When Joshua performed this test in September '03 it came back at 51 percent. A healthy boy his height and weight would do 100 percent. You can see Joshua was not getting enough air to his lungs. They did the 'balloon operation' which opened up the breathing tubes. He then did a little better. The doctors were relieved it was not his lungs so much as it was a narrow breathing tube.

In the end of December another breath test showed an increase to 57 percent. He is getting stronger!

Today his test came back at 68 percent! As you can see
it is a process to heal. Dr. Moore is quite please with the progress. He said God gave us two lungs and there enough lung for Joshua, even with the lower left lobe removed.
He believes Joshua may still have enlarged lymph nodes pressing on the left lung which is making it difficult for him to hit full lung capacity. This is left over from the Aspergillus (a fungus) he contracted on the first round of chemo in December '02. The lymph nodes were / are enlarged to fight off the infection. This infection takes a LONG time to clear up even now he is still on medicine for Aspergillus.

Joshua has been on the Trileptal for three days. Some symptoms have cleared up, some have risen. At times he feels someone has put weights on his body and feels exhausted. He still takes Oxycodone once a day. I wonder how long one must take this medicine before it starts to work. I will say, he still is working himself up to a full dosage.

This is a prayer request, that there is no damage to his bones. Occasionally, he has spine pain. I do pray his bones are fine. I have to show Dr. Frangoul the calcium pills. this Tuesday.

All in all, a normal week for Joshua. Leg pain still there. Still checking on alternative med. for this neuropathy.

Tomorrow our family is going to Tyler Hardee's house to celebrated his birthday. He is a friend of both Sam and Joshua. this is another first for Joshua to go to a friend's house since the transplant. Actually since June 7th. of 2003.

We had a wonderful anniversary. Joshua did well with the music. Sam gave us a bell to ring when we needed him. It was fun for all of us.

Blessing on your weekend .
Joy on this journey,
LesLie,Les,Rebeca, Sam, and Joshua Our Champion Warrior

Tuesday, May 11, 2004 1:56 PM CDT

Hi Everyone,
Our past week has been pretty normal. On Saturday, Les, Joshua and Sam went golfing. (Sam went for the ride).
Les drove Joshua up to the tee, after he was done he went back in the golf cart. Joshua said it was way too hot and next time he wants to go in the morning or later in the afternoon. He has been very good with the sunscreen and hat and has no tan. We found out last doctor visit, because of the exposure to radiation and chemo, Joshua is prone to skin cancer. We thank God we are not talking of Melonoma but the least serious kind,

Joshua did not take any more of the Trileptal because of the side effects he was having. We phoned Dr. Frangoul on this. He talked to Dr. Jesus who said for Joshua to take the medicine for three days, if the symptoms do not clear up, he will try another medication. They really want him off the Oxycodone. We shall see what happens...

This Friday, at 2:45 Joshua has a lung doctor appointment. We will let you all know the findings if anything.

Les and I will celebrate our 20th anniversary, which is May 12th. We will dine at home. Sam will be our waiter. Joshua will be in charge of the music. It should prove to be an interesting and fun night.

On a side note, for Sam, who at age 12, just finished typing at a lightening speed of 62 words a minute with the Mavis Beacon Computer Typing Class. I am very proud of his diligence and speed. Go Sam!!

Now that I am having a little more free time, I find I am able to once again bake bread for my family. They enjoy raisin, sandwich and French bread. All my recipes were handed down to me by my mother and they are yummy.

Will write on Friday evening.
Thanks for checking in,

Joy on this journey,

LesLie,Les,Rebecca,Sam,Joshua,Our Champion Warrior

Thursday, May 6, 2004 9:56 PM CDT

Hi All,

We have pictures up. Our friends who put up the earlier pictures are back on line and were kind enough to do this for us. Now… they are Christmas ones but…. They are new to you.
One note, If you remember, Joshua has no feeding tube now, it has been out since February.

At our doctor visit today, Doctor Jesus filled in a lot of gaps on our lack of knowledge of neuropathy.
It comes down to Joshua’s axons not working. Think of an electrical cord, the wire inside the cord is the axon. The axon is a nerve fiber that conducts a nerve feelings from the nerve cell. Got that! Joshua’s axons are dysfunctional at this time . The axon signals are not smooth or fast enough .The distorted signals are being received as pain . Example: in the swelling situation, those nerves are telling the veins all is fine, so the blood continues to stay pooled in the ankles, feet and lower legs. This can go on for a year. Unless God decides to heal him earlier.

The doctor gave us a new medicine, Trileptal, to replace the Oxycodone.
The problem is the side effects are the same as GVH, nausea, diarrhea, dizziness, and headaches. He took one pill and some of the side effects
already started to take place. He is not thrilled with the medicine so we will see if he stays on it.

Dr. Jesus freely talked about God our Creator and how He made our bodies and for some reason He made the nerves to heal more slowly than the rest of our body. At the close of our visit he said, “eat well, sleep well and pray. Well, what would you expect from Dr. Jesus?!

I found a calcium product that works for people who have had chemo and radiation. It is called microcrystalline hydroxyapatite calcium.
It increases bone thickness. I am all for that!
I am checking out some other avenues for the neuropathy . Then I plan to run them by the doctors. We will see what happens..
Joshua is feeling good now and I am thankful to God for that.
Joy on this continuing journey,
Blessing to you all,
LesLie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Thursday, May 6, 2004 6:18 AM CDT

Hi All

I wrote a journal Tuesday night, so if you did not read it feel free to go back and check it out.

We have a prayer request for Joshua. He woke up this morning (look at the time on this journal) with severe pain, numbness and pressure on his right ankle and calf area. I would venture to guess it is from the edema and the nerve problem.

Joshua said he can only feel about 20 percent in those locations. He already took an Oxycodone, something he has never done in the early morning. I am so thankful our nurse called an got us in for an appointment with Dr. Jesus today at 10:30 A.M. Someone must have canceled for the next available is in July. I will let you know the outcome later on today.

His joy on this journey,
Thank- you for your prayers,
LesLie

Tuesday, May 4, 2004 10:03 PM CDT

Good Evening Everyone,
What a beautiful, sunny day in Tennessee. Joshua drove us to Vanderbilt, and we parked in the handicap area which was a lot less walking for Joshua.

We had to be at the clinic an hour before our appt. for Joshua's immune system was low and they needed to build it up with the IV-IG. Thank-you God for insurance. The medicine alone is $4500.00. WOW! I was visiting with our social worker, Hope, and when I finished I went back to Joshua and Sam. A nurse stopped me and asked, if Joshua was getting the IV-IG today which I replied, "Yes". I asked Joshua why he didn't tell the nurse, he said, 'Why would I want to do that?" You see he needed to get an IV in today and WAS NOT looking forward to that. The nurse's first try did not work for the vain blew up, so they tried the other hand. They were able to insert the I.V. amidst Joshua feeling like he was to faint, so they got him orange juice then he felt weak and nauseous.
Fun time! The blood counts came back 'normal' and as always I use that term loosely for Joshua.

A couple of prayer requests for Joshua; he needs to drink more liquids for his renal (kidney function) was high. He also has had pains in his spine. With all the radiation and chemo he had had, plus the steroids he is continously on, makes him a candidate for bone fractures. I am checking out what is the best form of calcium for his situation.

Joshua told Dr. Frangoul that he gets out of breath going up one flight of stairs. Our doctor made an appt. on May 14th with the lung doctor to check Joshua's air passageways to see how the healing is going. The last prayer need is his feet and legs are hurting and puffy. Sometimes his feet feel like they are burning and get numb, then he just cannot walk anymore. Even his left foot is starting to get puffy. We are looking to get an appt. with the neurologist.

I drove home today since he was tired from clinic. We were able to meet up with Les and enjoy the Alanta Bread Company restaurant.

Good news, if Joshua continues to do well he will be allowed to go to school camp the third week in August. No promises were made, but I thought I would start early with the asking. I would drive him to camp and Joshua and I would stay in a room separate from the other kids. Obviously, not the same as being with friends in a cabin, but just going there will be great for him.

Sometimes I think Joshua is doing so well I think we should be able to let up a little more. The doctors think Joshua is doing well, so let's not rock the boat. We always go with what the doctors decide. It just is not worth it if he were to get sick.

Whitney, a teenage girl, who was in the hospital when Joshua, last summer, relasped on Feb.18th. Her father told me they had just finished her last round of chemo. The problem now is they have not been able to locate a donor for her. We do not want her to relapse again. For each time one relapse's with leukemia, the leukemia gets stronger. Sometimes to the point that the chemo cannot do its job and get the person into remission.

Please lift Whitney and her family in prayer and pray for wisdom for the doctors as they decide what can be done.
Dear Lord as people are added to the bone marrow listing, I pray for one to be a perfect match for Whitney. We leave everything to your perfect timing Lord. For you are never too early and never too late. Thank-you Jesus Amen
Thank- you all for your steadfast praying,
Joy on this journey,
LesLie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Saturday, May 1, 2004 12:36 AM CDT

Hi All,
Thank-you for all your prayers, no cramping this week!
We are turning back into a normal family. Which I realized as I was defrosting the back freezer.
I am a garden girl, and LOVE to be with my garden and digging in the dirt. We have many tall, deep yellow Irises.
Next to them are our four large Bleeding Heart bushes, Sam's favorite flower. Then comes Lavender, blue Panseys,
and our perfumed laden pink Carnations. Then we start with our numerous yellow daylillies and the list goes on. This year our four, almost six foot lilac plants hit Les' and my bedroom window sill. The perfume is heavenly as it wafts through our windows. I think I am like my earthly father and Heavenly Father in the way I love gardens. (You know, God was the first gardener:)
This past week Joshua had his friend, Sam, overnight and the following day they went to church so Joshua could receive drum lessons from their friend Chris.( His thumbs hurt from the lesson). They saw some people that did not recognize Joshua, which he thought was fun. Joshua, Chris and friend Sam went to Shakes for custard which taste like very smooth ice cream. During this time Sam, our son was home alone for a couple of hours, something he has never done, and yes, he survived while Joshua was out and Les and I were both at work.
Later when Joshua was back home in the bosom of his family, I asked Joshua how it felt to be out with friends since it was the first time in about a year for that sort of activity. He said it felt strange and he felt almost out of place. I know for myself, it was letting go of Joshua all over again. Once for actually growing up and the passage of time, then last year after the first remission and now again, I am cutting the cord. It is strange for me for Joshua to be doing something without Les or I. I am so use to just our family being with him
Joshua is doing very well as far as the transplant is going. It is the pains that attach themselves to the aftermath that are the problems. You all know the problems so I will not go into them. We have a prayer request for his poor grip in cutting, writing, drumming, these all take more effort than usual just this week he had me cut his pancakes for he was getting worn out by the process.
Right now he is a happy camper listening to music by Carmen,a Contempory Christian Artist while playing with his Legos. Brother Sam is in the room with him doing his math.
Les is at work and I am about to go outside and power wash our patio and deck. Thank God for ordinary days.
Joy on this Journey,
Love from us,
LesLie, Les, Rebecca, Sam and Joshua , Our Champion Warrior

Monday, April 26, 2004 8:00 PM CDT

Hi All,
It has been about a week since I have written last.
We have had an enjoyable week. The big excitement this week is, Joshua received his handicap parking sticker. It will be useful, especially going to the hospital for check-ups.
We have it to save Joshua from unnecessary walking when his legs and feet hurt. Remember, the neurologist said, when the legs hurt Joshua is to stop what he is doing. The longer he is in pain the longer it will take his legs to heal.
Les and Joshua golf at a nine hole course one time a week.
They go with a cart and LOTS of sunscreen. It is fun for Joshua to have something he can do each week.
This week Dr. Frangoul allowed Joshua and Sam to have a friend over. This boy goes to school and it was the first time our doctor allowed a 'school- child ' over. The other two kids who have been over are home-schooled.
Joshua continues to have pain in his legs and occasional
back and chest pain. The Oxycodone always helps so we are thankful for that. Joshua said the thing that frustrates him the most right now is his nights and days are still mixed up. I told him it is not as if he has to go somewhere, so sleep when needed and stay up when you have to.
We have past the six and one- half month marker. We are thankful for each day we have at home and each day we have each other, truly every day is a gift from God.
Thank-you for your continual prayers for Joshua,
In love and thankfulness,
Joy on this journey,
LesLie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Tuesday, April 20, 2004 8:13 PM CDT

Hi All,
On Monday, Joshua, drove Sam and me to Vanderbilt for his nerve testing.
The neurologist put sticky electrodes on his calf muscles. She actually used a tape measure to make sure the electrodes were placed correctly. It was hard to measure his right foot correctly, for it was so puffy. Gel was put on the stimulator and started the procedure. She started on a low level of stimulus and went to heavy duty one. There was no response to the stimulator in either of his legs. Since no response in the legs, the doctor went to one of his arms. The arm did well, except for Joshua's elbow nerve. Next,they used acupuncture type needles, for a more indepth procedure. She placed them in the leg muscles to see if the nerves would respond. Dr. Reed turned these needles while they were in Joshua. She even did this in his spine and said, relax while I do this. Joshua showed his warrior spirit and did not make one sound during all of this. Dr. Reed did say Joshua handled it much better than adults did. ( later, Joshua told me it was painful but kept it to himself) This procedure showed some response in the muscles. The doctor could not find the orgination of the pain. We were also told the type of chemo Joshua had, Cytoxin, does not cause nerve damage, like some of the others do. The results of the testing is he has pretty bad Neuropathy, Which means nerves do not respond to stimuli, though Joshua certainly felt all that was done to him. I find it interesting that even though he felt everything, his nerves showed no response to the procedure. We were told time is the healer in this situation.
Today, we went to our normal clinic. I am delighted to report Joshua's counts were normal for him. So, his bruises were just bruises, no sign of leukemia. Thanks be to God!
We are upping the Neurotin medicne to 1600 mg a day. Joshua still takes Oxycodone once a day mostly at night. Yes, you guessed it for his legs.
Another day on the road to recovery, to continue to learn His joy on this earthly journey which is before us.

Blessing to you all,
LesLie, Les, Rebecca,Sam and Joshua, Our Champion Warrior

Saturday, April 17, 2004 9:10 PM CDT

Hi All,
Just a short note. Joshua found another bruise on his big toe and both big toes are numb. His right foot is very puffy and he said if he stands long enough, it feels as if someone is standing on his foot. Besides, all of that, here is some fun, good news. Joshua wanted to show me how he could run, and run he did, about 20 yards! He looked good!:) Joshua told me how good it feels to be getting stronger each day.
His sleeping pattern is still off and it frustrates him to be sleeping all hours of night or day.
We go in for the nerve testing Monday at 1:00. Tuesday we have our 'clinic' appt at 11:00. Wednesday, I sign Joshua up for school. I will let ya'll know what happened at the doctor visits by Tuesday night.
Have a great Sunday,
Blessing on you all,
Joy on this journey,
LesLie,Les, Rebecca, Sam, Joshua, Our Champion Warrior

Wednesday, April 14, 2004 4:35 PM CDT

Hi All,
Life has been clicking along pretty smoothly. We went to Mike and Sisse Pfieffer's last Thursday. It was a terrific outing for all. Joshua was able to be out and about. Rebecca was able to played some worship music on their beautiful new 'Baby Grand'piano. Then we finished up with Sisse teaching Sam, 'Chopsticks' and Joshua some old duets, like 'Hearts and Soul'. (Is that the correct title?) It was a splendid time.
It is a beautiful day in Tennessee. Joshua had his tutor here so Sam and I went to get some exercise at a local one-mile track area. Sam rode his bike and I rollerbladded.
We came home to Joshua just done with being tutored and relaxing, eating homemade chocolate chip cookies. He afterwards went to practiced a little golf in the backyard, then some cramping and nausea started. Aftered the pain settled down he told me that was the closest he got to throwing-up since November at the Ron House. Sam and I prayed for Joshua. He rested in Mom and Dad's bed, The Healing Bed" as the kids named it.
I told him I was glad he had some GVH because that means he doesen't have Leukemia. You see, yesterday, Joshua was showing me some bruises in his inner wrist area, three of them to be exact. I told Les, he thought it might be because of the boys 'roughhousing', so, we are having the boys lay off of the wrestling for a couple of days and see if more pop out. I am happy to say when he showed me the bruises I did not panic but had a peace all about me knowing my Heavenly Father already knew about this and walks with us in this journey.
God is Good
His Joy on this journey,
LesLie,Les, Rebecca, Sam and Joshua, our Champion Warrior

Saturday, April 10, 2004 9:50 PM CDT

Happy Easter to you all,
HE HAS RISEN!!! HE HAS RISEN INDEED!
(as the old, Easter greeting goes.)
Rebecca and Les are in the church choir for Easter. They along with Sam will go to church, while Joshua and I will stay home and have our home worship time.
We have had a wonderful week, from visiting the doctor together, to reading a couple of chapters of Rick Warren's "Purpose Driven Life". This book is another excellent book to learn and grow from.
We celebrated Easter today, (Saturday) because Rebecca is leaving at 2:00 in the afternoon on Sunday. After a pleasant meal together Les hid the Easter baskets. The boys said."make ours a '10'," (the hardest to find). Well, Sam's was in the skylight, funny hearing Les saying, "hot or cold" yet Sam never looked up. I took a couple of pictures of Sam's exasperated face. Fun ending to a super week.
Joshua is doing pretty well. A little GVH and cramping. His legs are still bothering him even with the higher dose of Neurontin. In a couple of weeks we may up the dose of Neurontin. He has nothing that the oxycodone can't take care of while we wait for the Neurontin to work.
We are so thankful for the cross, for now through it we may have spiritual and physical healing. For by His stripes we are healed,( Isaiah 53:5). He was beaten for us that we may have abundant life.
We saw, "The Passion of the Christ" last Tuesday. What I got out of it is, I, we, are Jesus' passion. Jesus' passion, His deep love for us, put Him on the cross, no one put Him there. He did it for you and me. Jesus willingly took our sin while on the cross knowing it would cause His Father to have to turn His back on Him.
Our beloved Bible verses John 3:16-17 read as follows; "For God so Loved the world,(put your name in place of world) that he Gave His only begotton Son, that whosoever believes in Him will not perish but have everlasting life. For God did not send His Son to "condem the world, but that the world through Him might be saved."
I pray if you have never believed the above Bible verses, that this Easter would find you saying, " I believe Jesus took the penalty for my sin on the cross so I would have eternal life with Him."
How can we not love and serve Jesus? May this Easter find you rejoicing in Jesus'love for you.
Blessings to you all,
Joy on this Journey,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Wednesday, April 7, 2004 2:10 PM CDT

Hello Everybody,
It is Easter break at the Nienow Household, though, Joshua, is still being tutored this week. Rebecca is home and our family is just enjoying being together. The kids have been playing various games all day, and I am a happy mom for they have not been together since Christmas.
This past doctor visit went well. We handed out an Easter basket to our mylo hospital nurses then to our doctors,the nurses in the clinic and the social workers. Lots of fun to be on the giving side again.
Joshua,is holding his own at 152 lbs. It is interesting to me how his white count can be 11,000 on one visit and the next visit it is 4500, such is the nature of what he has gone through, I guess. I just found out that in February they checked to see if Joshua's blood had changed over to type B (what his donor is). The blood work showed he was producing antibodies for both A and B type blood. I find that facinating, as of then he is a non- type blood. This means he would need type O at this point. The next visit they will draw blood to see if the change has been made.
Joshua has experienced some side pain and Dr. Frangoul want us to keep him informed if it continues. He stated he has seen this with others.
Thank-you for your constant thoughts and prayers towards us.
Joy in this journey,
In His abundant love,
LesLie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Saturday, April 3, 2004 9:40 PM CST

Hi All,
We finally received some answers on why Joshua's legs continue to hurt. This pain is something has stumped our onocology doctors for the last year.
We went to see a specialist in neurology, Dr. Jesus Pina-Garza. He sees patients by referral, even with that we had to wait two months to see Dr. Jesus.
Dr. Jesus believes Joshua to have nerve generated pain, which they call, Reflex Symphotic Dystropy. Joshua has had so much chemo and chemo is a poison that can injure the nerves. This is rare thing and very rare to get it on both sides of the legs. The doctor did some testing on Joshua. One test was for Joshua to close his eyes as Dr. Jesus wrote a number right side up on Joshua's feet. Joshua said both numbers but he said it was very hard to tell the number on the right foot. Another test was to stand on his tiptoes, which was done very poorly. He also had Joshua stand with his eyes closed as he held his arms out in front of himself, which he did fine. The doctor did some reflexing hits on his knees, and there was a little action.
Dr. Jesus wants Joshua to get off the the Oxycodone, a narcotic, and to make up the difference has upped his other pain medicine, Neurontin,from 800 mg 3 x daily to 1200 mg 3 x daily. The docton said you cannot take too much Neurontin for your body will just flush it out. If that does not help there is another medicine, Trileptoe, which would be given then.
On the 19th of April, Joshua will have testing done called NCV testing on the sensory motor lower extremities.
With this testing a tag is put over the afflicted muscle to see how the nerves are doing they send little shock waves to the muscle. If it is slow in receiving the charge, that means the 'wiring' in the nerves are faulty. This will be a little painful he said.( I am NOT looking forward to Joshua experiencing more pain.)
The good news about this problem is that it is not permanent. It will take time, but it will go away. We were not given any time frame though.
Dr. Jesus wants Joshua to be active, but if his legs hurt or feet hurt he wants Joshua to rest. For now, no walking around the block. It is good they take a golf cart for the nine holes, even with a cart he is still very tired when he comes home. Dr. Jesus said the less Joshua hurts the more he can heal. Everytime he has pain it will take longer to heal. He wants Joshua to raise his feet when resting. For his blood vessel 'wirings' are not being told to restrain themselves when Joshua stands up.
We are glad we know what the problem is and the testing will show us for sure.
Joshua is not taking any unusualiy long naps. The cramping is lessoning. We ARE making progress and to God be the Glory. For great things He has done in the life of my son, Joshua. Thank-you Lord.
Blessings to you all,
Oy on this journey,
We love you,
LesLie, Les, Rebecca, Sam, Joshua,Our Champion Warrior

Wednesday, March 31, 2004 9:14 AM CST

Hi All,
It has been a peaceful week here. Joshua and Les went golfing (9 holes) this past Sunday. Joshua was a tired young man when he arrived home. Joshua right now is helping Sam with his math. I do not know if Sam is delighted with this set-up today. Joshua is a perfectionist and Sam is a free wheeling 12 year-old and some times the two don't meet.
Joshua continues to have pain in the legs in fact the right leg has a strong red tinge to it while the other one is normal color. This is the leg that continues to have a puffy foot. This Friday, he has an appointment at 10:00 a.m. to see a neurologist. Guess what you all, his first name is Jesus. Looks like a good sign to me:}
Today is Les' 30 years at G.M. I will outdo myself and make a chocolate cake complete with filling for The celebration tonight.
Rebecca is coming home on Friday the 2nd. We are all excited to see her and spend time with her;)
I am reading a book by Phillip Yancy, Disappointed with God. It gives me lots of food for thought on many things that happen in life. It was interesting on how I found it. I had just finished reading Max Lucado's book, Six Hours One Friday. In the study guide, in the back of the book, it talked about being disappointed with God and offered the above book. I did not think to much of it till we went to the Spring Hill Library (small) while looking at titles I found Disappointed with God. I thought, Hummm... I guess I am suppose to read this. Easy reading, and so far, I find it excellent material. One of the questions he ask is, " If God did what you wanted, a healing, gave you more money, ect., would you love God more? Since God is Love that is what he desires from us. Would you give him more of what He wants? Love the Lord with all your heart , soul and mind the Bible says, I find I am sorely lacking in my PASSIONATE love for God. Which I find disturbing, yet, I am happy to find out my shortcomings, for now, I know where I need to grow. As I look to my Heavenly Father for Himself and not just at one of his many facets, as the Giver of good things. I see, I will truly get to know Him as this side of heaven allows.
Having a great time on this journey,
Love in Him who first loved us,

LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Friday, March 26, 2004 9:31 PM CST

Hi All,
Joshua woke up today with vigor. He put suntan lotion on himself and rode his bike, wanted to enjoy the outside before the clouds moved and it got too warm. Joshua drove Sam and me to the library. Joshua had some school work to do at the library. We all enjoyed the excursion. I even got Les some golf magazines, .10 a piece, from July '03 -Feb-04
good deal.
When we got home, Joshua, was worn out and wanted to take a nap, which he never got. He helped Sam with his math lesson instead. Joshua then went outside to practice a little golf and came in, saying he felt like a piece of spagetti and so worn out. I am going to believe this tiredness is just part of the situation. It takes time to build up strength after what Joshua has been through. Joshua does so well most of the time, that we all are guilty of taking his rebounding health for granted. This is why we are thrown for a loop when he is exhausted for a couple of days.
Joshua still is having cramps and leg pain. I know he would love to have prayer on these two accounts.
I thank God, for you all and how you stand in prayer with us. All in all, Joshua had a wonderful day today. We are looking forward to another wonderful day tomorrow.
I have a sign on one of our door which says, Each day is a gift from God. I never want to forget that.
Still learning on this journey, and continuing to have His joy along the way,
In His Love,
LesLie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Thursday, March 25, 2004 8:05 PM CST

Hi All,
Today was a repeat of yesterday. This morning Joshua had some heavy duty cramping. After sleeping for pretty much of the day he woke up in the late afternoon to take Oxycodone, medicine for the pain in his legs. Let me tell you, with him being so tired. I find I must reign in my wandering thoughts. For they go back to June, with him being so tired and then to find out he had relaspe.
I remember Joshua 13:1, the verse, we, believe God gave us. I also know the verse, God keeps those in perfect peace whos mind is stayed on Him. (Is.) Anyway, It is another chance to trust Jesus and grow in the Lord. No matter what happens we can always count on God being with us and because of that we know it is going to be o.k.
Tonight, Joshua perked up quite a bit. He was even outside with Les and Sam pracaticing a little golf. Pray with us for a continuation of this night time energy for tomorrow.
Thanks again for your prayers
May the Lord bless you and keep you,
Still learning to trust on this journey.
God's Love and ours,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Wednesday, March 24, 2004 2:19 PM CST

Hi Everyone,
Thanks for your continue checking up and prayers on Joshua. Today is what Joshua termed a 'bad day'. He said the hard thing about going though all of this is having no energy, being tired, having body soreness and not being able to run like he use to. Today, he woke up after ten hours of sleep ate breakfast and went back to sleep on the couch. His legs and one foot still give him pain, enough where he has to take, oxycodone, a strong pain medicine to feel better. We prayed and then talked about how he is feeling. I said, The good news is these type of days are getting farther and farther apart."
I even tried to be 'spiritual' about it, and said," Maybe God wants you to take it easy today and have more time to talk and listen to Him." At any rate, we haven't had any school or tutoring today. It is 2:20 p.m. and he is still zonked out on the couch. As you can see he needs prayer for renewed energy.
Yesterday we went to the doctor. I let Joshua drive me to Vanderbilt, right to the parking spot. He did a wonderful job! He needs a little more practice in getting off the expressway and merging,( we went to 21st.) other than that he did just fine.
Joshua weighs in at 150 now. His counts are all off as far as a healthy person would be concerned but fine for him, Dr. Frangoul said. He does not want us to give Joshua iron pills for his lack of energy. Joshua got his stitch out which was from the catheter. It was done quickly and uncermoniously by Dr. Frangoul. (I was not sorry I did not bring the camera and make it into a stage production:).
Les and Sam did fine job on television. Their interview explained how the Ron house is important in keeping families together during lengthy hospital stays. They were told they did so well that they will be invited back next year with the rest of the family in tow.
The Lord is great and greatly to be praised .
Joy on this journey,
LesLie, Les, Rebecca,Sam and Joshua, our Champion Warrior

Sunday, March 21, 2004 5:11 PM CST

Hi Everyone,
Tonight, Sunday, at 6:00 - 8:00 on channel 2, Les and Sam will be on live at the Ron House to help raise money for the Ron Mac. house. Hope you can tune in and see where we stayed and see Les and Sam, It should be fun.
Joy on this journey,
Blessings to you all,
LesLie

Saturday, March 20, 2004 7:37 AM CST

Hi All,
Hope you all enjoyed hearing from the rest of the family. Everything is going smooth at the Nienow household. Yesterday, I took the boys to a 'forest' to be 'frontier's men'. Tramping in the woods is one of their favorite things to do. they were hot and worn out when they came out. Joshua, even fell walking downward to the van. He was tuckered out. When we arrived home Joshua found a tick on him, which he casually flicked off onto a kitchen chair.
BOYS! I would not trade thm for the world:).I am SO thankful God blessed me with two boys.
To those of you who live in Tennessee. Sunday evening At 7:00 P.M. Central time, Les and Sam will be on channel 2 being interviewed for the Ron. Mac. House. We're not exactly sure if it's on tape or live. Just in case it's live, you may want to tune in a little before seven so you do not miss it. This should be fun and interesting. I am so glad we are able to bless them back. They certainly blest us while we were there. I am thrilled we are able to help them with a fundraiser.
We are so thankful that Joshua is starting to enjoy everday life. Last week he even "ran' to me with the mail, and his running looked pretty normal. We praise God for so graciously agreeing with all of our prayers and answering them so bountifully. Blessings to you all,
Joy on this Journey,
LesLie, Les, Rebecca, Sam and Joshua our Champion Warrior

Thursday, March 18, 2004 9:17 AM CST

Hello Everybody,
This is Sam writing. Joshua is sore today, but that is expected. We just found a place right by our home that's really cool. It's like an arcade, but it also has a treadwall. You might be thinking "what is a treadwall?" so let me tell you. A tread wall is like a rock wall but it moves. so when you get up to a certain level it starts going down. Joshua did that two times. So that's why he's sore. Other than that Joshua is doing pretty well. I'm glad my brother is home so we can do other stuff as well like, play basketball, play with our legos, stickball, baseball, football, and just have a good time with whatever we do. Also I just want to thank-you all for your prayers, and keep on praying pleaseeee. Have a great rest of your day.

Joy In The Journey,

Joshua Dad Mom Rebecca and Me

Saturday, March 13, 2004 5:10 PM CST

Hello everybody!
This is the one and only Joshua journaling. I have not written in a long time so this should be fun. I have been very active lately or mabye too active. Sam and I would play baseball with Dad in our backyard, Dad would hit the ball and I would go running here and there to go get it. Once Dad hit the ball and it came right toward my face! I panicked and put my glove in front of my face and caught the ball, but the impact caused me to fall right on my back. Ouch! That is probably one of the reasons why I am sore today. Yesterday I drove Mom to Wal-Mart. While walking around, there was an elderly man pushing his cart at a slow pace. Normally I would have walked right past him and left him in my dust, but now I was just struggling to keep up with him, so that he would not leave me in his dust.
I remember when I used to complain about taking ten pills a day for the Crohn's disease. Now I take over fifty pills a day. Actually it's not that bad because I'm used to taking that many now. Sometimes it gets tiring not being able to go out, because my one day out is when we go to clinic and that is once every two weeks. So it's a blessing to have Sam around the house for a playmate. We do everything together now. He also lightens up my hard days by always making me laugh. He is a great brother. My hair is starting to look really curly now. I wonder what it will look like when it gets few inches longer. Wow! That's scary to think about.
During this time of being solitude from the public, I realized this is when I should really seek the heart of God and ask what is God's will for my life. What would He have me to do. Please pray that I would hear the Lord clearly to know my purpose.
Again I would like to thank you for all of your prayers. May you all have a great weekend.
With much love and thanks,
Joshua

Tuesday, March 9, 2004 7:15 PM CST

Hello everyone,
Well, it was boy's day out today. We had a great day together. This was the first time in a long time I ( Les ) went to clinic without Leslie. I believe this is also my first journal writing this year. Leslie does such a good job, I don't want to mess with success.
Everything went very smooth at clinic. All morning Joshua couldn't stop thinking about having to give blood the old fashioned way. He didn't let me know this until after he received his needle poke in the arm. It's the first week you'll remember he has no Hickman catheter. He was surprised that it really didn't hurt at all. God cares about the little things. ( which really wasn't little to Joshua. ) Even Dr. Frangoul thought it funny that Joshua ( after everything he's been through ) was so concerned about a little needle to the arm. We all had fun with it.
Joshua asked Dr. Frangoul if he was able to golf. We were all excited when he gave us his blessing. ( with lots of sunscreen. ) While I'm on the subject, does anyone out there know where we can find some golf instruction, that would be family friendly? It's been quite a long time for both of us. We may even have Sam learn as we relearn. While we must do a good job to protect Joshua from the sun for at least two years, ( it can bring on terrible graft vs host ) we think the fresh air will be very therapeutic.
The good doctor just looked at Joshua today again just shaking his head. He simply couldn't believe how well Joshua is doing. Medically, the entire staff was so sure we were going to have lots of problems. It convinces me all over again that Joshua is a walking miracle. Without God's grace, we would probably be seeing what all of the experts expected.
I want to close this Journal with something God had me read tonight, to remind us all how important you all have been and continue to be for our journey.

"Indeed, in our hearts we felt the sentence of death. but this happened that we might not rely on ourselves but on God, who raises the dead.
He has delivered us from such a deadly peril, and He will deliver us. On Him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."
2 Corinthians 1:9-11

When we as a family say thank you for your many prayers, we truly understand the power they hold. Everyone who has ever said even one prayer for Joshua, will have a large part in his life testimony.
Know that we love you all.
Having Joy In This Journey,
Les, Leslie, Rebecca, Sam and Our Champion Warrior Joshua

Monday, March 8, 2004 10:25 AM CST

HI All,
Thank-you for lifting Joshua up in prayer. He is feeling good today and the back pain is gone, Thank- you Lord.
Tomorrow, Les, is taking Joshua to the doctor, it will be his first time to get stuck with a needle. You will be hearing from Les tomorrow .
Thanks again for your prayers for Joshua.
Blessings on you all,
LesLie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Sunday, March 7, 2004 8:38 PM CST

Hi All,
Joshua had a wonderful weekend and as always enjoyed being with his brother, Sam,just having fun.
Tonight though, GVH (graft verses host ) seem to rear its' ugly head with nausea and cramping. Needless to say Joshua did not eat supper. After family prayer, Joshua is feeling better; yet he still needs prayer for back pain. Pray along with us that it goes away in Jesus name and that he feels well tomorrow.
Thanks for your constant thoughts and prayers towards us.
Continuous joy on this journey,
LesLie, Les, Rebecca, Sam and Joshua, our Champion Warrior

Thursday, March 4, 2004 7:40 PM CST

Hi All,
What a day we had yesterday, more emotional than I ever thought. Well, to begin with, we all slept over at the Ron House. We did not have a suite,so, things were quite cozy. We had three twin beds, Les had to place his on an angle in front of the bathroom. Sam and I bunked together, yes, on a twin bed. Joshua and Les you guessed it got the luxury of their own bed. We picked up food from all over Nashville and ate it in the common area of the Ron House. Joshua never was able to eat there before so he enjoyed it. Sam and I played ping pong and we all sat in the two story living room and read before we headed off to bed. A relaxing and fun time we all had.
Morning came and I was glad we were three minutes away from the hospital. Joshua and I were at the clinic by eight and Les and Sam enjoyed a cafeteria breakfast. Joshua got his IVIG (medicine to boost his immune system). This took about 1 and one-half hours. About an hour before the surgery our nurse put Emla (numbing creme)on the site. Dr. Morgan came at 11:00. We asked if we could take pictures and could Sam watch. He said, "fine" to both questions.
Nurse Becky and Dr, Morgan started to get the drugs going. Ladociane shot directly into the site; "it will feel like a bee sting, Joshua," said Dr. Morgan. I asked Joshua if it felt like a bee sting and he said he had never had one so he did not know if it felt like one. Then came the Verset and morphine. They waited for Joshua to be somewhat out of it and proceeded. We were told it would feel like tugging and pulling but not hurt, even though patients say that it hurts. As Dr. Morgan cut away he noticed under the skin where the tube was the flesh was adhering to the cuff of the tube; A small red plastic flat cylinder(size of a dime) .He had to 'dig more than usual to loosen it. Joshua was feeling this and kept putting his hands up to his chest
to shoo Dr. Morgan's hands away. So, Becky held them down.
It was getting more painful and Joshua was wimpering and moving his legs in adjation. They gave him more Ladocaine in the incision, and more Verset and morphine and then some more Verset and morphine. I was not a happy mom. I hated to see him in pain. Les and I both placed our hands on his legs and started pray silently. I all of a sudden started to feel lightheaded, hot and buzy in the head and was sure I was going to be sick and or faint. I left to go to the restroom and then the memory of the day we found out about the leukemia came back to me, for I had felt like this then.
Well, I got in the restroom and just cried and cried. I had healing tears of what we went through,and tears of happiness that Joshua is alive and tears of sweet relief that we are done and on the road to health for Joshua. Boy, was I surprised with all of that 'outburst' for I did not know it was in me. I went back to the surgery and there was my husband looking at me with concern in his eyes. I let him know I was o.k. Then there was Sam, getting ready to stand on the chair Les placed by the foot of Joshua so Sam could climb up it and look down at the surgery and take pictures. He was snapping pictures left and right like a newsreporter.
I just had to laugh inwardly at the sight of it. After about 50 minutes surgery was finished and with one nylon stitch to close the nickel size wound we were now done. He was bandaged up and ready to go but Joshua was a 'sleeping beauty' and would not budge. It was 11:50 and we did not get him to sit up till 1:00 ish. He was slow in his speech and when they said it ws o.k. to go Les had to wheel him out, for Joshua felt so out of it and weak. We went to the mylo hospital room area; I went in and found one of Joshua's favorite nurses, Linda. She was so happy for him and admired his weight and wavy hair.
After our visit we checked out the gift shop and then wheeled Joshua to the van. We went to Alanta Bread Company and had a low key celebration for Joshua. He really did not eat so we took it all home. He and I went to bed when we got home and had some good napping time. Later that night he told us all he really did not remember the day at all. I am so surprised, with all the morphine he had!
He is sore at the site. The pain should be gone in a few days. JOSHUA IS TUBELESS AND ON THE ROAD TO A HEALTHY RECOVERY.
What a red letter day for Joshua. Thank-you God for answering our prayers so graciously.
Joy in this Journey,
LesLie, Les, Rebecca Sam and Joshua Our Champion Warrior

Wednesday, March 3, 2004 7:11 PM CST

Hi All,
Just a little note to let you all know Joshua's catheter is out:) All went well and will write about it tomorrow. It has been a long....... day and, I am one tired mama.
I thank God for all He has brought us through.
Joy on this Journey,
LesLie,Les, Rebecca, Sam and Joshua, Our Champion Warrior

Monday, March 1, 2004 6:09 PM CST

Hi All,
What a glorious, rainy, cloudy day we had this March 1st..
Sam and I were invited by Vicki Pugh to go to the TPAC and see the play, 'The Diary of Anne Frank'. It was put on for the school children in the area. It was thought provoking; when the Nazi actors came out for the curtain call I could not clap for them.I guess I felt I would have been clapping for evil. I knew they were only actors, I just had too much reality in my mind concerning them from my father's war stories, to my avid reading on World War II. The play showed the wearing thin of one's emotions when one is cooped up for a long period of time. Though we can not come close to their situation, I think of Joshua and how he was unable to see the moon at night, for sometimes months at a time when he was in the hospital and unable to leave his room. At another time, when I told Joshua how beautiful the leaves were turning, he said, "he had forgotton it was fall."
We had a helpful friend, Sue Golab, stay with Joshua when went out today. Joshua gave her the grand tour of all his Legos. Joshua's tutor, Miss Lynn also was here. As you can see he was well taken care of while I was gone. I just thank God for friends who are able to help us out. I am learning that God wants us to lean on friends and have friends to lean on; that is what makes up the body of Christ. Sometimes I can be a bit of a loner and not want to lean on anyone. My thoughts are, "I can take of care of myself". I think God continues to give me situations to grow and learn to let others help me.
We might be spending tomorrow, (Tuesday night) at the Ron House. We have to be at clinic at 8:00 A.M.. With all this rain and add to that morning traffic on the freeway to contend with I would rather sleep over at the Ron House and just be two minutes away from the hospital on Wednesday morning.
Joshua gets his IVIG on Wednesday morn at 8:00. This IV medicine goes through his catheter. It will take up to one and one-half hour to complete.( this is to boost his immune system). After that, Dr. Morgan, his surgeon will remove his catheter. They will be using medicines, Verset for pain and morphine for amnesia, you guessed it, so he does not remember the pain. He may fling his arms around, so they said they may have to hold him down. Naturally Sam is hoping to be in on this momentous occasion. We will see if Dr. Morgan will allow it.
So mark your calenders, JOSHUA WILL BE TUBELESS ON WEDNESDAY, MARCH 3RD! This will be the first time since June 12th. 2003. Incidentally, Since Dec 20th, 2002, he has only gone one month without the catheter. Joshua is excited and looking forward to comfortable sleeping and a little wrestling with his brother and dad. ( Sams been looking forward to having Joshua's help again.)
Another happy step to normalacy, Rejoice and thank God with us. He has done marvelous things and is to be praised.
Joy on this journey,
LesLie, Les, Rebecca, Sam and Joshua Our Champion Warrior

Saturday, February 28, 2004 8:56 PM CST

Hi All,
We had a good doctor visit. Joshua's counts are doing so well that Dr. Frangoul said we could go to twice a month doctor appt., instead of once a week. WOW! the Nienow's are getting more normal with each passing week.:)
Joshua is maintaining his weight at 150. He is to get out his catheter on Wed. between 9:00 - 12:00. Since he will not be heavily sedated the lung doctor will not take a peak at Joshua's lungs. Dr. Moore said if Joshua has a problem with his lungs, at any time to let him know.
Joshua drove the freeway on Friday. The first time for he and Mom. He did fine, but Mom was a nervous wreak. I just get nervous driving 70 mph while I am the teacher and not the driver. God got us safely to the Cool Springs area (25 min from our home)
I drove the rest of the way to Vanderbilt.
The new clinic is SO spacious I think it is more professional than homey; unlike the other clinic. We were use to being very close almost bumping each other in the process. I guess, I know how a newborn baby feels now. You also can see how much I like change when it is not my idea.
Joshua has had an on and off again headache. He can't take Ibuprofen for it would lower his platelets, yet that seems to work better than Tylenol. He has a general tiredness about him; again, I think it is because he pushes himself to do a lot and just wears himself out.
Sam is feeling the beginnings of a sore throat and we need that to go away in Jesus name.
I know we are a blest family. I thank God for bringing us through all that he has. I can never sing enough praises to my heavenly Father. He is so Good!
Have a great night! (or morning)
Joy in the journey,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Thursday, February 26, 2004 9:40 PM CST

Hi All,
Hope this letter finds you all well. Joshua is to have his catheter removed this coming Wednesday. Dr. Morgan, his surgeon does electives mostly on Wednesday. A couple more days won't matter; besides I have lots of syringes, saline and Heparin . We flush his line with a saline solution and finish with Heparin a blood thinner. The thinner is used so Joshua does not get any blood clots in his catheter line.
Tuesday, I left Joshua and Sam alone and went to the store. I had left them home when I would take a walk but never to the store. It worked out just fine. Since Joshua has had so much happen to him. We nor our doctor were comfortable just leaving Joshua, even for a short time. Now, since Joshua has been doing so good I felt comfortable knowing Sam could call if something happened to Joshua.
Tomorrow we have a doctor appt. I will update all of you on Saturday.
Blessing on you all,
Joy in the Journey
LesLie, Les,Rebecca, Sam, and Joshua, Our Champion Warrior

Monday, February 23, 2004 8:56 PM CST

Hi All,

Joshua had some good schooling time with his tutor, Mrs.Lynn today. Since he did not have a nap yesterday, he was lookng forward to some good snooze time today. After his couple hour nap he woke up to play some football with Les.
They threw the ball back and forth. Sam and I were coming back from a walk and joined them. I was jealous of the way the boys were spinning the football as they threw it. They gladly taught me and my first throw spun out of this world!
It was so cool. After that, my throws went downhill.
Joshua has not had any more cramping since Saturday night. We thank-you for your prayers. What would we do without the body of Christ?
Tonight, I cleaned the surrounding area of Joshua's Hickman catheter. We even took pictures and Sam with mask on( we have to cover our face when working on the catheter) pretended to be a news reporter and question Joshua on how it felt to get his cathether cleaned. It was a fun time.Isn't that funny on how one's perception of fun can change. Two years ago, I would never of thought of that being a good time.
We are doing great. Blessings on all of you .
Joy on the journey,
LesLie,Les,Rebecca Sam and Joshua our Champion Warrior
Good night

Saturday, February 21, 2004 6:47 PM CST

Hi All,
What a lovely day in Tennessee. Joshua took a nap in our den with the window open about six inches. Yesterday,we went to the doctor. Joshua is now 150. Once again, Dr. Frangoul thought Joshua had rocks in his pockets. Joshua is happy with his weight and plans to eat only when hungry instead of forcing himself to eat. He likes my chocolate chip banana muffins. I made him two batches this week.
The plan is to get his Hickman Catheter out this Friday. That is, if his surgeon has a opening in his day for Joshua. Yes, Joshua, has his own surgeon, isn't that something! During this surgery time the lung doctor, Dr. Moore, will look down Joshua to see how his lungs and airway passages are doing.
Dr. Frangoul told us the sixth to the twelfth month are the most susceptible time to relapse in a bone marrow transplant. So, keep praying health on Joshua. If one can stay in remission for one year the "chances" of relapse is greatly reduced. The doctor said relapsing was like a Bell curve after a year it levels off. It is still a five year time period of watching him though.
Dr. Frangoul said to Joshua," You sure fooled me." ( as far as doing so well after transplant) If you remember how many things went wrong with Joshua from the beginning you can understand why Dr. Frangoul did not have lots of confidence in Joshua's body. We learned during this time our confidence is in the Lord not in what we see. We are thankful to our God for strengthing and preserving Joshua's body. We pray his life will always bring honor to our Lord who saved him.
Right now Joshua is having some cramping. He has not had this in a long, long time. We need to pray this away. His feet, ankles and now calves are still swollen and he needs to keep his feet up when he can.
Yesterday, we walked throught the new hospital it is beautiful but strangely empty. For not everyone has moved over from the old hospital. Everything is state of the art. Yet, being so spacious the family tie feeling of togetherness in this situation seem to be lost to me. I may be wrong, we shall see.
Have a wonderful Sunday.
Joy in the journey,
LesLie, Les, Rebecca,Sam and Joshua our Champion Warrior

Wednesday, February 18, 2004 9:16 PM CST

Hi All,

We would have what one would be considered a very normal day. Our schooling went well. Joshua just took his World War 1 test and did very well. I was able to sew a little. Joshua drove Les to the Kroeger food store. Les shopped as Joshua sat in the van reading a book about the life of Hitler. Joshua now has the role of a math teacher and almost daily helps Sam with his lessons.
Joshua was a sleepy head yesterday. As soon as his tutor left, he fell asleep and slept for about three hours. At the doctor's they said, "indeed,the lowering of the Prednisone could be causing him to be tired on the day of low dosage." This Thursday, starts a no Prednisone day then every other day is 70mg. He was exhausted yesterday. I, personally, think he played so much in the snow that his muscles got a heavy workout for he is feeling just fine today.
Sam and Joshua laugh and have so much fun together. I am so glad they have this time after Joshua 'living' in the hospital for so long.
Yesterday, I found out this past week, Rae Rae, a two year old baby who had leukemia (Joshua roomed next to her in the summer)died of a brain hemorrhage at the hospital. She was a cutie with red hair and sunny personality. Her grandparents took care of her and were at the Ron House when we were.Here is another family to lift up in prayer. I know people have said to us, "Why did leukemia happen to Joshua and your family." I thought that only one time. Mostly I have thought," Why not us?" "Why should our family be excluded from what is considered to be a bad thing that sometimes happen in life?" But, you know what, more often I think, "Why has God allowed Joshua to live while many other families must go through the heartbreak of losing their child." We are SO blest and I have learned and know each day is a gift from God. I think of another family last year, the day we brought Joshua home from the hospital they were making funeral plans for their fourteen year old daughter, Heather.
This is for those of you from New Life Church who know Pastor Jack Taylor. Regretfully, his beloved wife Jerry of almost two years passed away and was buried yesterday. Our family met Jerry, she was so full of the joy of the Lord, she had a beautiful smile and looked for ways to make you feel at ease and comfortable. She was a wonderful blessing in Jack's life and she will be sorely missed by those of us who knew and loved her. We know Jack, a deeply committed man of God most likely said , "Jerry graduated to Glory."
Keep him in your prayers, would you all.
I am starting to figure out, earth is not my home, heaven is. No matter what happens in our lives God IS Good.
Learning on this journey,
LesLie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Monday, February 16, 2004 8:35 PM CST

Hi All,
We had a great snowfall 8 -10 inches with 12 inch snow drifts reported by our snow measurer,Joshua. Joshua enjoyed the snow with his brother, Sam, on Sunday. They packed a lunch and trekked through the little woods behind our back yard. Then they made a snow wall and enjoyed a snowball fight with their parents. Joshua was a sore boy later that night. Monday, they went out again and played some"football"
together. His back was sore later and he was 'wiped out.'
He went to bed at eight tonight. (Maybe this is a nap and he will get up in a little while.) Only problem is, I have to wake him to flush out his port and he has pill taking at 9:00 then again at 10:00. Which incidently he is quite adept in doing. He can take 11 pills at one time! When he told Dr. Frangoul of this great feat, he looked at Joshua and asked, "why would you do that.?'
Not quite the answer Joshua was expecting. At any rate we all had a good laugh over this wonderful thing Joshua can do. (hope you are also).
Joshua has an appointment on April 6th with the neurologist concerning the swelling of his feet. One is just huge, with the ankle swelling to match. It is not painful when one touches it but is generally sore.
I am calling the home health care tomorrow to come pick up the feeding machine. We are believing by faith that we will never need it again. Another step into normalacy in family life. Adjusting and changing in life, I guess it keeps us pliable. Isn't that how God wants us to be in all things?
Those of you who have kept up with us since June will remember, Baby Zoe who passed away in September at 11 months old. Well, her mother, Judy,was pregant soon after the death of Zoe. There was much rejoicing for this gift of new life. Last week, Judy, miscarried at 16 weeks. This family, Chris, Judy and their three-year-old son Joshua have been through so much. They love the Lord and are hanging on to Jesus as well as they can. May I ask as fellow brothers and sisters in the Lord would you remember them in prayer? On a situation like this I just wonder, "Why Lord?" . I am anxious to see how God weaves this situation for good. I pray they be a mighty testimony for the Lord and His goodness.
His joy in this earthly journey,
LesLie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

P.S It was an hour and one-half nap and Joshua just got up. Thanks to Sam for waking him up to take his pills.:)

Saturday, February 14, 2004 3:48 PM CST

HAPPY VALENTINES DAY !

Hi All,
We saw the lung doctor on Friday. Dr. Moore said Joshua's lungs were just fine. The problem Joshua has is as follows.
Each lung lobe is supplied by a major branch of the bronchial tree. There are three lobes that make up the right lung and two which make up the left lung. Joshua's
lower left lung was removed in June because of the fungus Aspergillus. This fungus also created heavy scarring in the main branch of the left bronchial tube. Because of this scarring it is hard to get enough oxygen to the left lung. Dr. Moore told us," God gave us two lungs and we can work well with one lung." He also said when he is able, as far as he is concerned, Joshua can do sports. The only thing is he may tire out faster and not be as quick as his friends in sprints. ect.
Joshua's weight is 146 and they were pleased especially without the extra feedings at night. His counts are looking very good also. The only thing that is happpening now that you can pray for (besides luekemia NEVER returning) is he still is swelling in the feet and the ankles. He said they hurt all the time. He loosly ties his shoes to lesson the problem.
We had a "stand in" doctor today (one that we know). He asked Joshua what he liked to do at home. We all laughed when he said, "Clean.".
Joshua told him how he went to do a push-up. He was in the up position then plopped to the floor, his arms unable to hold him. We all had fun with that one.
In two weeks we will have clinic (doctor visit) in the new hospital. We have not been in there yet. We heard it is beautiful and are looking forward to seeing it.
I went to a baby shower with Debbie Hardee today. It was fun to do something outside of seeing the doctor. Joshua had an adult friend, Dale, (Debbie's husband) to stay with him. They played chess and worked on a model car. Sam was enjoying time with Tyler, Dale's son at their home. Les, well, he had to work.
Little by little we return to the outside world. I do not want to say real world. Because, where we have been has been marked with the reality of death. Here life seems to be more precious and not taken for granted. Where you cheer each family on and their win is your win, their loss is your loss and you feel both most keenly.
I know each day is a gift from God,
Learning on this journey.
Leslie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Wednesday, February 11, 2004 4:12 PM CST

Hi All,
A beautiful cloudy day in Tennessee. I believe it is a good day to take down our Christmas village.
Joshua received a valentine card from one of his favorite nurses, Adele. (Hi,Adele :) The 7th and 8th graders at Joshua's school also sent him lots of valentines. He loved it, for it helped him to feel part of the school. He is glad they still keep him in their thoughts and prayers. Even the school's spanish teacher sent a Val-E mail. We also love to read the messages on Joshua's web ,they are happy mail to us.
Today is a low key day for Joshua. Napping , feeling generally tired and not eating alot. He did manage to get some school in before the tiredness came upon him.
Hopefully tomorrow will be zippier for tonight he gets the 70 mg. of Prednisone.I wonder when he will be zippy on his own.
I read John 9:35 today. It says, Jesus went about all the cities and villages.... and healing EVERY sickness and EVERY disease among the people. It blesses me for it tells me there is NOTHING out there Jesus can not heal. NOTHING.
Our God IS an awesome God.

God's Blessings to you all,
Joy on the Journey,
LesLie, Les, Rebecca,Sam and Joshua, Our Champion Warrior

Tuesday, February 10, 2004 7:27 PM CST

Hi All,

Yesterday Joshua felt he had a little graft vs host, because he had some nausea and felt like throwing up.
Today however he feels fine. I am wondering if it has to do with his Prednisone. He takes 70mg. one day and 20 mg. the next. The problems seem to always follow the night he gets the 20mg. I will ask the doctor on Friday and see what he thinks of my diagnose.
Today is my b-day and we celebrated by letting Joshua drive us to the mall at Columbia. I think I saw all of 20 people in the mall. It was fun for Joshua to get out and the first time we took him out to a mall since who knows when. Then we went out to eat at Applebees. They saw Joshua with his mask on and happily gave us a table by ourselves. Not that we had to be concerned at 3:30 in the afternoon, but we need to be safe.
Last night as I was talking to a friend of mine on the phone, she heard him laugh and said, "it is SO GOOD to hear Joshua laugh." It is for me too. It is a fun and carefree laugh. Laughter is good for the soul.
be blest
Joy in the Journey
LesLie, Lester, Rebecca, Sam and Joshua, Our Champion Warrior

Saturday, February 7, 2004 5:30 PM CST

Hi All,
We are doing quite well around here. Joshua just woke up from a long nap and is feeling fine.
Yesterday's doctor visit went well. He lost only one pound from last week and is now 142. Joshua was finally allowed to take the n.g. tube out of his nose. Boy, was he a happy camper! I thought he may look 'strange' without it. When I looked at him I didn't "miss' it at all. I thought that was something since he has had his 'nose jewelry'(what Les named it) for least six months. In fact, Les never even noticed it missing, Joshua finally had to tell him. Isn't that funny?
Joshua will have a visit with the lung doctor this Friday to check out his breathing capacity.
It looks like we do once a week visits till the end of February and then start going twice a month. I told Dr. Frangoul I did not know what I would do with all this free time. He basically said, "That's the idea, to get you back to normal life." We have not had normal life for over a year now and I almost feel like this is normal life. I guess we will be moving back into the daily world as all of you know it. It will still be slowly but surely for us though. I do not want to forget all that I have learned. I do want to use it somehow to bless others. Sometimes, I think I have not really sat down and thought of what we, as a family have been through. I sometimes look at pictures when Joshua was 104 lbs and think, he really looked sick, well, he really was sick.
God has brought us through this whole time and I know my faith in Him is stronger than ever. God is real, He is alive and He daily works in our lives. I know because Joshua is a living miracle. The transplant basically going so smoothly is another miracle. Speaking of miracles, remember little Andrew Pierce, the three year old (not four) who I told you all about last week who had cancer in his brain? They were not going to operate. Then they were forced to, for one of his eyes were bulging out from the pressure and there was internal bleeding. They did the brain surgery. He was in ICU for couple of days and then was discharged from the hospital in less than a week. I just saw this child myself and he looked like any three year old running around and having a good time. The doctors just did a C.T. scan and saw no new growths. IS'NT GOD GRACIOUS. WE SERVE A MIGHTY GOD. I know the family thanks you all for your prayers. Please keep praying that no new growths would appear in his brain or any where else. Blessings on all of you prayer warriors.

Thankful to God on this growing journey,
LesLie, Les, Rebecca, Sam, and Joshua Our Champion Warrior

Tuesday, February 3, 2004 8:27 PM CST

Hi Everyone,
Joshua continues to feel great. His foot is still swollen, giving him the only discomfort he's having. Today the boys were able to go to the movie house ( Sam thinks it is funny when I call the theater that.) with their dad to see the much desired Lord Of The Rings. Joshua had to wait until the crowd thinned out. As it turned out today, there were only around 10 other people there with them. Interesting enough, one was a nurse from Vanderbilt, and she knew our doctors. Small world is it not?
Update for those who keep asking if Joshua is coming to church or can do things now. He may go to the mall on weekday mornings and early afternoons. He is not allowed to go anywhere where people congregate at night or weekends. Our doctor still does not like him to mix with people closly just in case they are carrying germs they do not know about. No school or church till October, unless Dr. Frangoul believes Joshua can handle it health wise. Even though he looks good on the outside, he is still taking about ten different perscriptions and is continuing to be monitored by weekly blood work ect. He continues to nap most everyday and being out like today at the movies tires him. His nights are up and down with being unable to sleep. We have read sleeping problems can be a problem post transplant, hopefully his body gets on a regular schedule before school starts in the fall.
This is his cocoon-at-home time, gaining strength and having his immune system get back to healthy normal. Each week he is able to be a little more zippier at doing homework and housework and the like. Just know he is getting healthier every day and will soon experience better health than he ever has in his life. For now he has no Crohn's disease or allergies. Thank- you Lord for all these healing side effects. As always, Lord you do abundantly more than we could ask for.
Thankful in the Journey,
Blessings on all of you,
LesLie,Les, Rebecca, Sam and Joshua,Our Champion Warrior

Saturday, January 31, 2004 3:26 PM CST

Hi All,
Praise report for Joshua all the way around.
He gained six pounds from Tuesday to Friday. He is up to 143 lbs. (Before cancer he never weighed more than 124 lbs.) Dr. Frangoul was sure he had rocks in his pockets.
Joshua's liver is doing much better, almost normal bilirubin. Thyroid is normal, kidney function fine. All his counts are looking good for him.
The big news is ....... Drum roll..... JOSHUA NOW HAS GRADUATED TO ONCE A WEEK VISITS. Though we will miss seeing many friends, it is one more day to get back to regular life and school work.( I guess everybody does not go to the doctor twice a week.)
Joshua ate four homemade tacos yesterday. Les and Sam ate only two . When Joshua likes something he EATS.
Oh, yes, now that I remember, I got so excited about all the good news I forgot this one prayer need. His soles of his feet are still hurting badly and they along with the ankles are a little puffy and swollen looking.
He is having a great day and even did some arm exercises and sit-ups.
Joy on the Journey,
LesLie, Les , Rebecca, Sam, and Joshua Our Champion Warrior

Thursday, January 29, 2004 7:43 PM CST

Hi All,
I went to work today, Sam was out on an home schooling adventure with the Pugh's. Les was with Joshua.
Joshua drove expressway today with Les. Joshua thought it was GREAT! I am not ready for Joshua to drive expressway with me so I am glad he has his dad.
Joshua is doing all around well, except here and there. For example, tonight, he has had pain in his back and some nausea, along with foot pain. Enough pain to where he has to take medicine for relief.
On Tuesday we found out on a level of 1 - 6 in terms of health care. 1 needing little care to 6 needing major care. Joshua is a 4. Higher than we thought, since he is doing so well. There is alot to watch out for in a transplant than even we realize. I am glad our doctor and nurses takes such good care of Joshua. We thank you Lord for them.
Blessing to you all,
Joy on the Journey,
LesLie, Les, Rebecca, Sam and Joshua,Our Champion Warrior

Wednesday, January 28, 2004 6:49 PM CST

Hi All,

Another fine day for Joshua. Just some nausea in the morning which was relieved by some medicine named, Kytril.
This week, Joshua started being tutored in writing and algebra. He enjoys his teacher, Lynn Stefanick,a long time friend of ours, who he has worked with before.
With the use of the Pfieffer's indoor bike, Joshua did 15 minutes of exercise.
This Friday, I am going to ask Dr. Frangoul, if we may start once a week visits instead of twice a week . We will see what he says.
All is peaceful on the homefront.
Joy on this journey,
LesLie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Tuesday, January 27, 2004 7:02 PM CST

Hi All,
We had a fine day. We drove in the 'snow' to clinic.
We were early and they took us early. Joshua's counts are looking very good, for him. Of course,it helps to be on
Prednisone. Joshua's weight was 137 and holding. we are going to one can of milk at night. We have to make sure he ups his liquid intake now that he is losing liquid from not having the other can of milk at night.
It seemed our doctor was in a low-key somber mood. He was not his usual super cheerful self. Earlier, before the appointment, I went up to one of our nurses and ask how was four year old, Andrew Pierce . (Remember he is the boy who was transplanted seven months ago with a mass in his brain.) She told me," not good, it is cancer in the brain and they can not operate for the doctors never can get it all out." She also said I need to be praying.
So,if our doctor mood and Andrew's dire situation have any connection I now can understand. Our doctors and nurses love the kids they see and want them to be healthy.
It must hurt their heart when they do all they can and it still is not enough.
I saw Andrew's father and he was distraught, as you can well imagine.
I would love to see a Major miracle on Andrew's behalf.
Join me in praying for a healing here that will dumbfound the doctors.
Also, as we waited for our appointment in the hallway, I told the boys about Andrew, Joshua just started to pray out loud for the situation. He, doing that, blesses me more than anything else he can do. It pleases me that my children love the Lord with all of their heart, soul and mind. What else could I want?
Prayer to OUR God changes things.
His joy on this earthly Journey,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Monday, January 26, 2004 4:21 PM CST

Hi All,
Another GREAT day. No pain with the gall bladder, Thank - you God. We walked halfway around the block and cut through the lawns. Joshua has done homework and even cleaned the kitchen without being told.(Don't you mothers just love that!)
All is well, thank- you, God, for ordinary days.
Joy on the Journey,
LesLie, Les, Rebecca, Sam and Joshua, Our Champion Warrior

Sunday, January 25, 2004 6:51 PM CST

Hi All,
We had a Great Day. NO PAIN ....
We had church via televison. Joshua ate three meals and enjoyed his Legos. Joshua started a book called, The Wizards Tide. It is about a family and their struggles in the 1930's.
Two of Joshua's friends stopped by for a surprise visit. He enjoyed the time with them.
We are looking forward to another GREAT Day tomorrow.
Thank- you Lord for a wonderful day.
Enjoying the journey,
LesLie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Saturday, January 24, 2004 9:48 PM CST

Hi All,
This is the third journal I have written today to update you with Joshua. Most likely you will want to backtrack to know what is happening.
It is almost 10:00 P.M. and Joshua is finaly feeling better. Thank-you for your prayers.
Sweet dreams and blessings to you all,
Thankfulness in the Journey,
LesLie

Saturday, January 24, 2004 7:10 PM CST

Hi All.
I wrote this morning,this is an extra because the pain in the gallblader is back. He had pain this morning and I had to give him some Dilaudid. I was hoping he would have no more problems with the gallbladder,I guess it takes awhile for the new medicine to work. Right now the pain is mostly his back and spine. I gave him some Dilaudid almost an hour ago and it is no better. So, we are distracting him with a video, though so far it is not working.
It is so strange to me how one day he can be fine and the next day hurt. This is such an up and down recovery, I never know what to expect, sometimes even one hour to the next.
He said it is still not getting better. Please pray the pain would leave in the name of Jesus.
Thank- you,
Continuing to rest in God's peace on this journey,
LesLie

Saturday, January 24, 2004 7:56 AM CST

Hi All,
We went to our ultrasound on Friday 9:00 and then waited for our doctor visit in the afternoon at 1:00. Dr. Frangoul told us Joshua has alot of sludge in his gall bladder. This causes pain when he eats alot or has high fatty meals. Our doctor put him back on a medicine called, Actigall. Joshua had this in April, of last year and it cleared up without further meds. Lord, we pray it clears up in the same way this time also.
Joshua wanted to go to Sonic to get a grape slush. He asked if he could drive us there, and I agreed. He was still thinking about the slush when the nurse came in to draw some blood from Joshua. As she was doing this Joshua said to her, "Did you know I have slush in my gall bladder?"
We all had a good laugh over that statement.
Joshua's temperature consistantly is low 96.1- 97.5. He is always cold. They are checking out his thyroid." In Joshua's situation one usually has problems with the thyroid way down the road, not this early," one of our nurses commented. We shall see. They continue to moniter Joshua's liver function.
We are starting to taper the Prednisone and will be off it in a month.
This past Tuesday we drove to Joshua's school to pick up some things. As he waited in the van I found his good friend, Jeff, and told him Joshua is in the van outside. He quickly ran out to see Joshua. Some of his teachers came out to see Joshua and cheer him on to recovery. It was good for both of us to visit the school, they are wonderful to us.
I am going to have Joshua go outside and play basketball with Sam today. He needs some outdoor exercise.
Planning on a Great all- around day.
Peace on this journey,
God's love and our's,
LesLie, Les, Rebecca,Sam, Joshua, Our Champion Warrior

Thursday, January 22, 2004 9:16 PM CST

Hi All,

This letter is an update to the one written earlier today. We did go to the doctor today for a chest x-ray and blood counts. The chest x-ray looked clean, no problems in the lungs. Yea! Yes, God is our shield .
Because Joshua is on Prednisone, his blood pressure has gone up. Dr. Frangoul is putting him back on the blood pressure medicine. Joshua’s bilirubin numbers (liver) are still high. Because of this, and the pain he was getting today on his right side. ( It would shoot to his back then go to his spine ) they have decided to do an ultrasound on Friday at 9:00 A.M. They feel the pain may be related to his gall bladder.
As we know more, we will let you know. He is feeling much better tonight and was able to enjoy a round of golf with his dad and brother, Sam , via computer. Les just told me Joshua destroyed Sam and him.
After clinic today, we visited two of Joshua’s favorite nurses and the rest of the crew on the 5th floor, where Joshua spent his last year. They all were so glad to see how healthy Joshua was looking. They had seen him at his worst, so sickly, bald and at 104lb. They were glad to see his rosy cheeks, short brown hair and weight gain, now up to 137.
Blessings on you all,
Joy on this journey,
LesLie, Les, Rebecca, Sam, Joshua our Champion Warrior

Thursday, January 22, 2004 11:55 AM CST

Hi All,
Joshua started out good today and got some pain in the spine and right back. He took some Dilaudid and it still hurt even to breathe. His pain is about an eight out of ten. He is close to tears so I know it hurts.
I am waiting for a call back from the doctor to see if he wants us to come in or wait it out. We covet your prayers.
Thank-you, our dear prayer warriors,
Joy in this earthly journey,
In Him,
LesLie

Wednesday, January 21, 2004 8:17 AM CST

Good Morning,
Joshua is doing much better this morning. Thank-you for your prayers.
My computer is also doing better. Strange how occasionally
it doesn't want to work for me.
Anyway, with the Prednisone, Joshua's weight is coming up, so we are going down to two cans instead of three cans of feed each night. Dr. Frangoul would like to get Joshua's n.g feeding tube out but wants to be sure Joshua can maintain his weight. Prednisone also aids in getting counts back up. His platelets are 50,000. They were 38,000 on Friday (normal is 150- 450)( platelets stop internal bleeding as bruising, hemmoraging and the like.) White counts are normal at 4. Just his red count is off at 25. If he goes lower than 25 they will transfuse him.(good normal is 37-45). One reason for his 2-3 hour naps, and ten hour night sleeps I guess.
Joshua's bilirubin is up, this has to do with the liver, gives him a tinge of yellow in his handsome brown, so that is being watched.
In two weeks, if Joshua is still doing like he is, they will remove the chest catheter by surgery. Which is good and bad news for Joshua. Good news is he doesen't have to mess with flushing it, covering it for showers, having Mom clean it with new bandages and is closer to wrestling around with Sam and Les. Bad news is he has blood drawn every week with a needle (kids or adults who have gone through alot like Joshua tend to have a lower threshold for pain) Also once a month he will have a I.V. put in for i.v. meds. I believe Joshua is weighing the balance and looking forward to its removal. Last year he went without the catheter for one month. It is strange to get rid of these things that seem normal to us but are abnormal to the 'outside world'. We are moving on.. When the catheter is removed, we will go only once a week to clinic. Wow! that is exciting. On the flip side though, I will miss the twice a week meeting with the other parents and hearing about their children and cheering up those who need to hear an uplifting word. I also have a good time conversing with our social worker Hope, who is a wonderful Christian women with an upbeat personality.
One thing I have realized, nothing is static, change is life. I am one when I like something I like it,do not change it. Change though is constant and hopefully we grow with it.I believe I am a stronger Christian because of this season with Joshua and leukemia. I pray because of it I may bless others who have a road like this to travel.
All for His kingdom,
Joy on this incredible journey,
Leslie, Les Rebecca, Sam and Joshua, Champion Warrior

At this time I know nothing more about little Andrew.
Those who want to send a card for Brooks family send it to Joshua's address on the home page and we will get them to the family. Thanks

Tuesday, January 20, 2004 9:45 PM CST

Hi All,
Check out the new pictures of Joshua.
He had a good day but feels "funky" now at night. Did his breathing treatments and took some Dilaudid for pain.
My computer is acting up will write more tomorrow.

Continuing to learn His Joy on this journey,
LesLie,Les, Rebecca, Sam, Joshua Champion Warrior

Thanks Will for putting up the pictures !!

Saturday, January 17, 2004 9:27 AM CST

Hi All,
Thank -you for Rejoicing with us.
Our next milestone is a total of 180 days. Then comes the one year mark, then the 500 day mark, then I think the five year mark.
Our doctor visit showed some changes. Good news, Joshua's counts are up! Not normal like ours, but on the way.
Let's pray they continue in this direction. Joshua's eating has gone way down, one - half piece of pizza on Friday. His weight is 134. To stop the downward spiral we are to go back to Predisone, (we were off of it for ten days) 70mg. is what he is to take now. He was taking about 120 mg when we started up on the Prednisone in November. Remember, Prednisone increases appetite.
We got home about 8:30 P.M. Friday night. It was bittersweet. Even Sam for all his wanting to be home was a little sad to be leaving the Ron House. Another chapter closed in our lives and we press on to normalacy.
One exciting thing for me, I have been wanting to minister to people at the Ron House and it never transpired. Well, on the last day I saw a woman crying, I was able to talk and pray with her. She blest me and I blest her it was a wonderful time in the Lord. At the end she said to me," you have hope all over your face." Thank- you Jesus for shining through me. God was so good to give me my heart's desire.
I know many of you have been praying for Brooks Richardson, he died in I.C.U. on Friday afternoon. His blood pressure took a nosedive and his body then shut down. He was 12 years old. Pray for his family, that the peace of God surround them . I can not totally imagine what they are going through. The searing pain their heart must handle now must be great. If you want to sent a card to them, those of you who know us put their name on the enevelope in care of us. For those of you who do not know us, Joshua's P.O. Box number is P.O. Box 1347 Spring Hill, Tennessee 37174. I will get these cards to them.
One more family, the Pierces, have a little 4 year old boy named, Andrew, who has gone through a bone marrow transplant seven months ago, (he has been fight cancer since he was born) they found a mass in his brain and they are concerned it may be the cancer returning. I am praying it is not cancer. Lord strenghten this family as they are weary in the battle.
Lots to pray for, I thank God for being in the Lord's family and having wonderful prayer warriors as you all are. May God's shield of protection be around you all to day and everyday.
God's Joy in this earthly Journey,
LesLie, Les, Rebecca , Sam and Joshua, Our Championwarrior

Thursday, January 15, 2004 4:53 AM CST

DAY 100 !!!

PRAISE BE TO GOD ON HIGH !

THIS ABSOLUTELY IS THE DAY THAT THE LORD HAS MADE.
LET US REJOICE AND BE GLAD IN IT.

Hello everyone,
We want to make a request this special morning. If you have read even one of our journals, you then know that day 100 is a day we've been looking to as a milestone to recovery. If you've ever said even one prayer for Joshua over this past year, please join our family today in PRAISING OUR GOD.
We don't want to ask him for anything today. We want to spend today just thanking Him and Praising him for not only what He's done but mostly because of who He is.
Thank you all for your constant faith to stand with us for so long a battle.
We love you all
There Is True Joy In The Journey
Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua

Tuesday, January 13, 2004 7:35 PM CST

Hi All,
Joshua,Sam, and Les had a 8:30a.m. Dr. appt. and got out at 9:30 a.m. can you believe it? They packed up more from the Ron house and were home by lunch time.
Joshua's counts are the same, low. He is 136 lbs. He still has swelling on the left foot and ankle the doctor said they are not going to do anything with it now just watch it. He does have a clinic appt. on Friday, so much for skipping a Friday like they thought we might do. Joshua has finished his I.V. medicine, which we gave to him each night at 8:00. It is strange not giving him this medicine he has had it this whole past year 'cept end of May and the beginning of June. I told one of our nurses, not doing the medicine seems abnormal. She laughed and said,"Yes, doesn't every body give their child I.V. meds at 8:00 every
night?" Until he gets his catheter out we have to flush the lines daily so Joshua does not to get blood clots in his lines.
I think I have been around the hospital and The Ron House too long for they seems like the normal places for me to be and abnormal to be home. So if you remember, pray I make the transition smoothly. I think I have some institutionalization
in me that needs to leave so I can get on with home life. Thanks..
Joshua drove to church for some drum lessons with a friend, Chris, from church. He has not done this for over a year and after about hour and one-half he was wiped out.He said his thumbs were sore and had to stop and rest sometimes.
He wanted to drive home, which he did. Then he went right to bed for two hours. We got him up and he was so cold that he kept his blanket wrapped around himself and warmed himself by the fire.
Sometimes I think it is two steps forward one step back... Even at that we are making progress.Think of how far we have come, God surely answers our prayers.
We will occasionally sleep over at the Ron House when we have an early Tuesday appt. I wouldn't mind when Joshua is stronger and able to be around people a little more, sightsee some lowkey spots in Nashville and have an enjoyable dinner at the Ron House. Time Time Time is what we have to wait on.
Update on Brooks, he still is in ICU
slightly better They found a blood sac behind his liver and operated to removed it.
Because his organs are not working 100 percent he still on a ventilator and dialysis.
Keep praying God's glory be showned in this situation. Remember, Prayers to our God changes things.
Joy on this journey,
Love,
LesLie, Les, Rebecca, Sam, and Joshua - Champion Warrior

Sunday, January 11, 2004 7:04 PM CST

Hi All,
Joshua is having a good day. He has had about 25 ounces of liquid so far. He needs to drink at least fifty ounces of liquid each day or.. Mom hooks up his ng tube to a bag of water. With all these meds he is taking he need lots of fluid to wash them through.
He is doing better at his eating. I have found out he has to really like it in order to eat it so we are spoiling him in that department . He is maintaining his weight. Joshua went down to two cans of ng milk feeding at night he wants to get off the milk and get the tube out of his nose. It dangles about his neck and has decided after 6 months of having it he wants to be with out it. Hopefully in a month.
He is having a little swelling in one of his feet. Lets pray it goes away.
He is still napping in the day.
We are home today and the boys go back tomorrow to the Ron House. This is our last week there.
Blessing to you all,
Joy on the journey,
Leslie, Les, Rebecca, Sam and Joshua Champion W arrior

Friday, January 9, 2004 5:06 PM CST

Hi All,

We are closing in on the 100 day mark of post transplant,next week Thursday will be the big day.Next week
Friday, we plan to leave the Ron House for good. The Ron House has certainly been a blessing to us. This is most postively a haven for the weary. Remember to drop in your change in the little Ronald McDonald house banks by the registers at Mc Donalds when you go to dine there, it won't be wasted.
We went for our doctor visit today. Joshua received his immune booster medicine through his chest catheter. We have some TERRIFIC news to report.. Joshua's bone marrow is completely taken over by the doner's totally healthy bone marrow. THANK-YOU LORD. WE PRAY THAT IT STAYS THAT WAY FOREVER.
On some other points heart is fine, lungs to be check out more completely after the 100 days are over.
Dr. Frangoul said it is looking like Joshua is having chronic (longer lasting than acute) graft verses host disease.( For you new readers, Lisa and Shari and any others of you out there, graft verses host is when the new blood of the doner,the graft, comes into a new place, doner, Joshua, and thinks this is strange place so let's attact it.) The acute graft verses host disease leaves a body when it is done while the chronic hangs on sometimes for years. One of the symptoms of chronic graft verses host are low desire to eat/drink. Also, blood counts that are low for they should have picked up by now. Joshua fits both of these catagories to some degree. Platelets are 27,000 normal is 150,000 through 400,000. His white counts are 2.8, normal is 4.-10. and his red count is 2.48,normal is 3.80 - 5.50. Lastly his PCV, pack cell volume is 24 normal is 39 - 50. If he goes below
20 they will give hime a blood transfusion. His skin test showed there is some active GVH(graft verses host) but no rashes thus far. Dr. Frangoul wants us to call if any vomiting. Joshua is geting some cramping and nausea and feels like vomiting but since he is not eating alot all he gets is a feeling. Despite all these things I just told you on the outside Joshua looks great. A little puffy in the cheeks thanks to Prednisone and hairier than usual thanks to Cyclosporine but he looks good. The hair on his head has grown and he looks funny to me with hair. How strange one's perception can change.
Joshua is napping now on the couch to Christmas classical music when he gets up he wants to paint the town green. (he said everyone paints the town red and I want to be different.) He said he will go for a malt(think calories everyone) and a Subway sandwich. Dr. Frangoul said he can now occasionaly have lettuce and tomato on a sandwich at a fast food place. Joshua is excited to eat something different than meat on a bun. Then we will go get some water at the store for he is dehydrated. We will just put it through his ng feeding tube. He just doesn't like to swallow alot of water. I guess whaterver it takes, right?
I sent out late Christmas cards out to those who didn't know about Joshua. Welcome to Joshua's Web page
I have not been able to find out much about Brooks not being at work to hear from my kind administrator who knows the family from his church. I do know from talking to a doctor on Tuesday he is still alive so keep up those prayers . Prayers to our God changes things.
Joy on this earthly journey ,
God is good all the time
LesLie, Les, Rebecca, Sam, ChampionWarrior Joshua

Wednesday, January 7, 2004 2:35 PM CST

DAY 92
Hello everyone,
This is Les giving a fast update before running off to work. Joshua successfully made it through the spinal tap for checking his bone marrow. He's a little sore in his back, but otherwise everything went well. He's starting to get some nausea and cramping as we continue to cut back on medications. Please pray that this is as bad as it gets. He does great with tolerating these few things. We have optional medicines for both conditions when absolutely needed. Yesterday Joshua had Leslie pray with him and without taking anything, cramping and nausea left him. If 2003 taught us anything, we sure learned the power of prayer. THANK YOU JESUS !!!
Speaking of prayer, please be praying for my wonderful wife. Leslie is suffering from cold and flu symptoms. She's feeling very weak, and hates not being able to love on her two boys. Joshua can't take any chances, even with his own mother. Sam is normally always hugging on his mother. It's tough on all of them. I have to work and can't help her very much. I did spend last night and most of today with them. Unfortunately I don't have an off day until Friday.
We won't know any results from this weeks tests until probably early next week. Thank you for your prayers as we wait for God's great report.
We love you all,
Les, Leslie, Rebecca, Sam and Our Champion Warrior Joshua

p.s. Sorry it took so long to give an update. We are at the Ronald McDonald house and all the computers systems are down because of the move into the new childrens hospital.
I stopped home before work to use our home computer, so we could give you something. Thanks for understanding our delays.

Saturday, January 3, 2004 10:26 AM CST

DAY 88
Hello Everyone,
Seasons come and seasons go. Years come and go. Thinking about our new year, I already can testify that somethings haven't changed and never will. I know that our God is the same yesterday, today and forever. Once more God showed us that He is always in control.
We received a report yesterday that a heart test done last week, came back not looking very good. The Vanderbilt staff wanted us to come in as early as possible to have more extensive heart tests done. I (Les) took the two boys and spent most of our day getting Joshua checked out. I am very pleased to tell you that not only did his heart look good in yesterday's tests, we were told that it looks better than when checked before transplant.
The medical staff once more was amazed at how well Joshua is doing. We were able to come home again for the weekend. Next week Tuesday they will be checking the bone marrow. On Wed they will do a C.T. Scan. These two checks will tell them and us exactly where we are with our total recovery.
The plan has not changed for Joshua coming home for good. They are still looking at day 100. That is Jan.15th. If this 48 year old body would let me, I'd be doing cartwheels all over the house.
As a family, we all discovered something yesterday. We learned that the devil can't scare us any more. After this past year, we've had too many opportunities to see God's grace and mercy. We trust him not only with Joshua's life, but with everyones, including our own.
May God Richly Bless You This New Year.
Thank You For Standing With Us This Past Year. Thank you to those of you who were able to pray about yesterday's tests.
We Love You All,
Les, Leslie, Rebecca, Sam and Our Champion Warrior Joshua

Friday, January 2, 2004 1:02 PM CST

Hi All,
Today our doctor's office called and wanted Joshua to come for more in depth heart and lung testing. The heart testing by itself will be 1 1/2 hours. They said his first testing on the heart and lungs was not good.
Pray with us that it is nothing that time or medicine can't fix. We would hate for him to go through more surgery of any kind.
Les should update tomorrow . Thanks for your prayer shield.
God is Good
Joy on the journey,
Leslie,Les Rebecca Sam, Champion Warrior Joshua

Wednesday, December 31, 2003 11:10 PM CST

Hello All,
It is almost New Year's Day. Joshua, Sam and I watched the ball drop in New York. Not as exciting as when I was little. Last year at this time Les was with Joshua at Vanderbilt. Becca was at church and Sam and I were at home. This year Les and Becca are at church and the boys and I are at home. The boys played around and we three played Sorry, Joshua won. I fattened Joshua up with some Cheese Sticks about 110 calories a stick.
Les and Joshua went to the doctor on Tuesday. Joshua had gained a pound now he is 133 lbs. They did a echo test and a pulmonary test on Joshua. The doctor is a little concern about Joshua's lungs for Joshua can't sneeze and it hurts to breathe deeply. He did not do as well on the breathing test as the doctor would have liked. We will tell you more was we find out more.
We were given a New Year's pass in fact we should be home till Monday Then we will hang out at the Ron house till the 15th of Jan. If all the testing of Joshua goes well that should end the Ronald Mc. chapter in our lives.
What will the new year bring to our family and to all of yours we don't know, but God does and good or bad He will be there with us. I pray that thought brings you comfort as you start a new year.
Update on Brooks Richardson: they are weaning him off the ventilator. The infection in his intestines and pancreas has not left. He is bleeding from his stomach and his through his mouth and I am told he is hanging by a thread now. Keep those prayers coming!!! Good news, even though they could not finish the round of chemo he is in remission,
Praise the Lord. Healing on Brooks, Lord. Thank- you
In the Lord Joy,
LesLie, Les Rebecca,Sam, Champion Warrior Joshua

Wednesday, December 31, 2003 11:10 PM CST

Saturday, December 27, 2003 8:17 PM CST

Hi All,
We hope you all had a merry Christmas. We started our Christmas Eve late, 8:30 p.m. That is when we open our gifts. Each year one of us reads Luke 2, This year it was Sam's turn. He surprised his dad by reciting the Christmas story from memory. It was fun to see Les' surprised face.
After our gift opening and appetizers we brought out the mattresses and slept under the tree, one of our Christmas tradition.
We enjoyed Christmas day dinner with Mike and Sisse Pfieffer, they are always lots of fun and full of good conversation.
Joshua's clinic visit went well. Dr Frangoul hugged him. Les said the doctor was so happy for Joshua and Joshua has exceeded Dr. Frangoul's expections. We know God answers prayers Yes, and much much more. Joshua has dropped four medicines in the last week. The swelling of the legs, ankles
and feet is gone. Only two things, besides complete healing to pray about. The milk feeds with the ng tube (nose tube)is going at a rate of 65 not 90 or his stomach gets crampy.The other thing is he is 132lb. I personally would like to see hime stay in the 130's. Dr. Frangoul is not real concerned about these two things. Most likely the cause is the lowering of the Predisone. He takes at least one two hour nap a day. Christmas Day he walked a mile with his family and then napped for 1 1/2 hours. (Joshua said Dr. Frangoul would be proud of him, and he was.) Today he threw and caught the football with his dad and brother Sam.
Today is Sam's 12th. birthday. He was so happy to spend it with all of us at home rather than last year's birthday,when he opened most of his presents in the hospital's large waiting room.
God is Good
Joy on the Journey,
Love LesLie, Les, Rebecca, Sam, Champion Warrior, Joshua

Wednesday, December 24, 2003 1:11 PM CST

Merry Christmas,

WE ARE HOME!!!!WE ARE HOME!!! WE ARE HOME!!!!!!
God has been more than gracious to us. He has allowed us to be home together. I had tears of joy and relief knowing Joshua is well enough to come home. There were also tears flowing just thinking what we have come through this past year. God has been so faithful to us. Thank-you Lord! Even the fever is gone and Joshua's temperature is 98.6!
Mike Pfieffer, was able to pick up Les and the boys from the Ronald McDonald house this morning, which was nice for me since I was working on the house.
Yesterday night, three of Rebecca's girlfriends came over and put up the tree along with lights and ornaments.
I put up the Christmas village, much to Sam's enjoyment.
Sam was so happy to see the tree up, he was not expecting it because he knew his dad was unable to be home to put it up. Between work and the Ron house it was an impossibility for him to do.
We have two days home to enjoy together. We hope you enjoy your family time as much as we will.
Psalm 16:11B In Your presence is fullness of Joy.
May you experience His presence and know the fullness of Joy
Merry Merry Christmas,
LesLie, Les, Rebecca, Sam, ChampionWarrior, Joshua

If you did not see the prayer request for Brookes Richardson please look at the last journal.
Thank-you

Tuesday, December 23, 2003 6:36 PM CST

Hello Everyone;
This is a rare Les journal, letting everyone know that I'm still here. I've started a wonderful 18 day Christmas vacation from work. I'm already feeling rested.
I hope all your plans for this wonderful holiday season are going well. Ours have been put on hold for at least one more day. Today at clinic, they found Joshua to have a 100.4 low grade fever. Dr.Franguol did not feel comfortable having us go home tonight. We will be spending tonight at Ron's house with the hope of being allowed to go HOME tomorrow. Please pray with us against this fever. It's probably the only way we'll be able to have a total family Christmas at home sweet home.
Leslie made her weekly trip to Columbia to make all of her ladies beautiful at the nursing home. Rebecca spent the day catching up with a few friends. The women will have a night at the house together, while the boys hold down the Ronald McDonald ranch.
We all have mixed emotions about our Christmas. We would really like to be home. Joshua would be happy as long as he's not in the hospital. I believe we've all concluded that we're content just having Joshua with us this Christmas. There were times earlier in the year, we could only wonder if he'd be with us this long.
God has blessed us with his grace and mercy while healing our Champion Warrior. Joshua is feeling pretty tired most of the time. A few aches and pains once in awhile. For the most part, he really is doing great. Thank you so much for your continued prayers.
Jesus truly is the greatest gift. Without the gift of God's son, we couldn't have the gift of our son. We know it's Jesus that has put and kept life in Joshua. As you celebrate the Christ child, please know how much He loves and cares for us all. I challenge you to take this love personally. Receive him as your own.
May God richly bless you all this Christmas season.
The Nienow's Love you and thank you for standing with us this long year.
With Joy In The Journey
Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua

Prayer request: There is a 12 year boy,
Brookes Richardson who has been fighting for his life in ICU for about one month. After one and one-half years of remission a new cancer was found in his body,this time his body did not take to chemo and they had to stop treatment mid-way through. He has been in the ICU with brain hemmoraging and now his intestines and pancreas have an infection that is not responding to the antibotic. The doctors have no answer to why these things are happening. They are saying it does not look good for him. The family loves the Lord and look to Him for healing. Join us as we pray for Brooks.
Pray also for his family whose Christmas will be difficult in the ICU hospital this year.
Thanks In Him, Leslie

Sunday, December 21, 2003 10:54 PM CST

Hello Everybody!
This is Rebecca. I have not written one of these in awhile. I have some great news! Joshua is out of the hospital! We praise the Lord for this blessing! Tonight my family and I will be spending the night at the Ronald McDonald house together! I am so thrilled to get to spend this time with my family. The Lord sure is good! Joshua was even able to play catch with the football with Dad and Sam and even got ambitious enough to get grass stains on his new jeans. (Even Mom did not mind!) Joshua said he loved being out in the fresh air! He really enjoyed it! The playing outside really wore him out though (even though he was only out there about 30 min.)because when he came inside he had to take a three hour nap! Tonight while Mom and Dad went to the staff/elder dinner for church, Sam, Joshua, and I watched a movie on tv called "The Christmas Shoes". What a tear jerker! All three of us cried during at least one point in the movie. We still had a nice time though just being with each other. The holidays are a great time to spend together for every family, but ours is especially enjoying it this year. Please continue to join us in prayer as we pray that Joshua will be able to come home for Christmas. Thank you as always for your love, prayers, and support. You are such a blessing to us! We love you!
Joy in the Journey,
Les, Leslie, Rebecca, Sam, and our Champion Warrior Joshua

Saturday, December 20, 2003 4:33 PM CST

Hi All,
Rebecca made it safely home at 10:40p.m. We had a pleasant time by the fire with tea and hot chocolate just catching up on everything.
Rebecca and I are with Joshua. While Les and Sam are at the Ron house. Rebecca said she would not have recognized Joshua if he was walking down the street. His face is SO full, she said. We call him our Chubface. It is so cute.
So far nothing is growing in the blood cultures so that would mean he does not have a bacterial infection. Which would mean it would be a virual infection. The temp is 99.7 and the blood pressure is climbing up looking normal. He has been doing less eating and more tube feeding,. He is not into hospital food and with the lowering of Predisone he is losing his desire to eat. Joshua is getting intermittant cramping, so that also lessens his desire to eat.
After all of that we are still hoping to be discharged on Sunday to the Ron house. Let you all know when we know.
God bless,
Contentment on the journey,
LesLie, Les,Rebecca, Sam,Champion Warrior,Joshua

Friday, December 19, 2003 6:02 PM CST

DAY 73

Dear Ones,
Joshua is still in the hospital having some graft vs host symptoms(remember that is when the graft {donor) bone marrow sees Joshua's body and thinks it is a foreign place, which it is, and starts to attack it Joshua's body then reacts by way of vomiting nausea,diarrehea )or viral symptoms. (they are not sure which).
They decided for Joshua to spend the weekend at the 'Vanderbilt Suites' as Vanderbilt hospital is know to those who frequent it like us.
This morning Joshua did not feel to good, as the day progressed he felt better though and was able to start eating once again. Sam is with Joshua now. Les won't spend any time with Joshua till he (Les)is over whatever he has.
Rebecca is on her way home continue to pray for travel, mercies, for her and driver Jamie.
Today marks the one year anniversary since we found out about Joshua's diagnose of leukemia. We have grown so much during this time. I have found out alot about my character during this time both good things and not so good. So this has been a time of growth for me in many areas. I can say thank - you Lord for showing me, me.
Now if you want to see how our first day was go back on the journals to the first one and relive that day with our family.
God is good, no matter what.
contentment on the journey.
LesLie, Les. Rebecca,Sam, Championwarrior,Joshua

Thursday, December 18, 2003 5:22 PM CST

Day 72

Dear All,
We wrote last night and Les put in a P.S. you can read that to catch up on this news. ( We must call the doctor at temp 100.5 not 105.5 as yesterday's letter stated before I corrected it.)
This morning at the Ron house the fever went to 101. when we went to clinic the fever was coming down. At the clinic they ran blood count tests and they were normal. Because of the fever and feeling of sluggishness the last couple of days they gave him antibotics through the I.V. which took an hour. During that time his blood pressure went down and so did the fever They did not know if the reason was because of his blood pressure medicine or the antibotic. Low blood pressure along with lower temp. after an antibotic sometimes means an infection in kids in Joshua's situation. Not to take any chances with Joshua and the low blood pressure, they said," you are to go into the hospital for a day or two."They also took blood cultures and will see if they grow any bacteria in the meantime they will give him antibotics in the hospital for a day or two.
We got in the room about 4:00p.m. ( in clinic since 9:00 a.m.) One of his favorite nurses, nurse Linda, was there to take care of him. She took his temp and it was staring to rise once again.
Joshua mentioned now, "I have been in the hospital every month this year."
Pray this is a short duration and we get released in a day or two. Rebecca is coming home on Friday and we would all love to be together at home for a couple of days.
I told the doctors I am glad they are all here to take care of my son.I am looking at this as a blessing. First, it is a week before Christmas and they only expect a day or two in the hospital. Second, I am glad this hospital is so close by.The doctors and nurses are wonderful to us and do the best they possiblely can.
If Joshua has something, they caught it early and for that I am thankful.
I am feeling much better, continue to lift Les up in prayer, No sickness in Jesus name.
Also pray safety for Rebecca and Jamie as they drive home from Texas.

Blest in the journey,
In His Love,
Leslie,Les, Rebecca, Sam and Champion Warrior Joshua

Wednesday, December 17, 2003 7:22 PM CST

Day 71 since the transplant

Hi All,
We never did make it to the library.Joshua was So tired, I did get him up and out to the post office to mail off some E-Bay checks. Then he watched the Lion Witch and the Wardrobe (C.S Lewis story) and took a three hour nap and was the first one asleep that night. Again, being tired is because of getting off the Predisone. The next day he felt much zippier. I believe knowing he was going home helped with it.Joshua was able to go home for a night. Jeanie Gerald from our church, came over and was with the boys, she called it," people sitting." We needed her because Les and I were invited to Dave Ramsey's company Christmas dinner. Les use to work with Dave years ago,then slowly they went their separate ways. Dave found out recently where Les was living and sent him an invite. It was a wonderful evening.
Dave and Sharon are a delightful and generous couple who love the Lord. They have three children who enjoy being part of the business also. Bless them Lord and their company to bless others.
Joshua has had some intense pain on his back right side enough to take some Dilaudid, a heavy duty narcotic.
He also now has a slight fever 100.2 Pray that it goes down, if it reaches 100.5 we have to call the doctor.(doctor's orders)He is also having some chills with this fever.
It has been one year to the day that I first took Joshua to the foot doctor because of the bruises in between his toes and on the soles of his feet.
We go to the clinic and see Christmas decorations and my mind goes back to one year ago when we started this journey. Sometimes I feel we have moved to the hospital even though we are at the Ron house we still see the hospital enough to feel we are still connected.
On a happy note I have seen four or five families who have had a bone marrow or are in remission. They ALL are doing well. Thank-you Lord.
Psalm 92:15b: the Lord is upright, He is my rock and there is no wickedness in Him.
God is a God who loves to give his children good things

Joy on this Journey,
In Him,
Leslie, Les, Rebecca, Sam, and Our Champion Warrior Joshua

UPDATE: 12:00pm Thursday.
Hi everyone, this is Les. I thought I'd let everyone know that Leslie just called me and said that they are in clinic checking Joshua out. The fever did rise high enough for the staff to want to see him. Dr. Frangoul even gave thought to admitting him in the hospital. We all know we don't want that. Please pray when you read this that Joshua's situation would be fine, and that we wouldn't have to move into the hospital. Please also pray for Leslie and me as we are both feeling like we're starting to fight sickness in our own bodies.
Thank you so much and May God Bless You. Les

Monday, December 15, 2003 8:40 AM CST

Hi All,
It is early in the morning for us, Sam is sleeping, covers all askewed and Joshua is lying in bed with nausea.
For the past three days, in the morning, it has been nausea, cramping or both. He takes some medicine and we pray and it leaves in about one hour. We will talk to the doctor about it tomorrow. I am sure it is because we are lowering the dose of Predisone. Other than that he is doing good, no joint pain, eating well and doing homework, (which is always a good sign to me.)
Sunday, we slept in so late that we missed the services on t.v. so we had our own church service. We all shared something from the Bible prayed, sang and finished with communion and a prayer blessing, "May the Lord bless you and keep you...
We had some visitors yesterday. The Pughs, Scott, Vicki,Lydia, (Rebecca and Joshua's friend) Dan, (Sam's friend) and Shawn, also a friend of Sam's.
Ielyn Bass friend of Rebecca and Joshua also came to visit Joshua. Joshua was able to visit a little outside in the frosty air. (We had just finished with outside exercise) Sam and his friends went downstairs to play ping pong and to have less people by Joshua. Joshua visited from a distance for a couple of minutes and went to our room for more people were coming in the Ron house. After the Pugh's and Shawn, Ielyn left, Katie (friend of Rebecca and Joshua) with her dad, Kevin, came to visit. All were happy to see Joshua looking and feeling so well.
Today, I want to take the boys to the Nashville library. I will hopefully get an o.k from Dr. Frangoul. He is concerned about the flu going around and wants Joshua to stay as far as he can from it.
Have a contentful day in what ever you do.
May the Lord bless you and keep you may he make His face shine upon you and be gracious unto you may He lift his countenance upon you and give you His peace .
Joy on this Journey,
Leslie,Les Rebecca,Sam and our Champion Warrior Joshua

Joshua is still feeling nauseated... continue to keep him in your prayers today .. We thank - you

Friday, December 12, 2003 5:26 PM CST

Hi All, DAY 66
We had a great time at home. We put most of the decorations up and enjoyed our fireplace. Joshua loves to sit by the fire with hot chocolate. We were home from Tuesday, 5:40p.m. till Friday 12:30 pm. Notice the extra day we were given?It was just what the doctor ordered. I am destressed, feel renergized and ready to move forward with a bang. Thanks, Trish and all the rest of you for praying for me.
Joshua's doctor visit went well. He is now 136 lbs. I know I for one, would hate to gain weight that fast. But great for him.
We now are dropping down to three cans of feeding tube milk a day (dropped one). He had lowered his eating of sweets considerably so I cook more of his foods with healthy fats for the calorie exchange.
Joshua's platelets are now 38,000. Unless he falls down the stairs or plays football they won't give him platelets for he is making them (or else he would have zero) he is just pokey about doing so. This situation waxes and wanes during this course of recuperation.
Joshua finally has tested negative for the VRE, which he had for two months. One usually gets this when one's immune system is poorly working. Another good thing, Joshua HAD major allergies, off the testing scale in dust mites and
grasses. Now, thanks to the transplant, NO MORE ALLERGIES.
Dr. Frangoul said he had the top of the line treatment for allergies, a transplant.
They took x-rays of Joshua's legs today. He has had some intensed joint pain, enough to where he has had to take Dilaudid, a narcotic, twice. The Dr.just want to see if anything unusual is going on .
Joshua goes to bed about 11:00 12:00 gets up early, 7:00ish a.m.,sometimes 5:00,for it seems he can not sleep long periods of time then by late afternoon he is ready for a nap. He feels weak and wears out easily, which is bound to happen since he is being lowered on the Predisone.This is the working through of the transplant, other than that he is just fine. ;)
We are at the Ron House now. They have a Christmas party planned for the 17th. Sam will get to go and enjoy it.
It is amazing what a mini vacation can do for someone. No wonder God wants us to have a day of rest each week,so we can cheerfully meet the other six days with joy and vigor. Our God is a Good God.
Joy on the journey,
LesLie,Les Rebecca, Sam and Champion Warrior, Joshua

Tuesday, December 9, 2003 3:37 PM CST

DAY 65

Hi Everyone-
WE GET TO GO HOME FOR TWO NIGHTS!!!!!!!!!!!!!!!!!!!!
At the clinic appt. today, Dr. Frangoul, said we could home for the weekend and I said , "I was thinking"...(Les always knows something is up when I say that) I am feeling like Dorothy and I just want to go home, How about today through Thursday? Dr. Frangoul said that was fine. Bless Him Lord.
This past week has been emotionally draining on me .I feel we are in a holding pattern and I am starting to lose sight of the light at the end of the tunnel. But,I know I can not lose heart, I need to finish the race before me well. I want to go home and trim our house in it's Christmas apparel for Rebecca, who is coming home on the 19th. I want to get back to a somewhat normal life. But what is normal ? and Is normal- normal(think about that one). I feel like I am in a fish bowl looking out and seeing people do all sorts of things, yet we can not join them or the activities like we used to. I feel like life is passing us by. But is it really ? The busyness of earthly life, is that what it is all about? Then there are times I do not care, do your thing world I will just curl up in my little corner and let you pass by. I guess this is all part of the process of going through this situation.I certainly do not want to have a complaining spirit.God has been so good to us. Our son, Joshua, is alive what more can I ask for? Nurses, doctors ,you all, along with the blessing of the Ron house and it's people have been so good to us. You have prayed for us and cheered us on, on this journey. I KNOW we have been blessed. Les and I talked and we realize we need to focus on JESUS and not the circumstances. We want to finish this earthly race strong with the Lord. Just you and you alone Lord.
I am coming to the point of enjoying talking and sharing with fellow mothers who have children with cancer. I still want to be a blessing even though I have these feeling of, Get me out of here. and NOW! I want it to be in God's time for I do not want to miss being with someone the Lord wants me to share with. Thank -you all for listening to my carrying on.
Joshua weighed in at 134. The tapering of the Prednisone is starting to show. Joshua is becoming very tired and wears out more easily. He even wanted me to help him out of a chair. He is losing a little of his appetite. He has some joint pain in his knee which should leave when we are off the prednisone. Joshua's platelet count is in the 40,000 range, which makes it hard for his bruised arm to heal.(150,000 - 450,000 is normal )( the doctor is not worried about it, It is a normal thing in Joshua' situation.Much lower though and we will need a platelet transfusion.
Today they gave him I.V. medicine named,Pentam, he will get this once a month to ward off pnemonia.
so thankful that we are going home for two days.Keep those prayers coming,
Hanging on to God's Joy on this journey,
LesLie, Les, Rebecca, Sam and Champion warrior Joshua

Saturday, December 6, 2003 6:58 PM CST

Hi All,
DAY 60
Joshua had his friend Jeff over today he sure enjoyed the time with him. Joshua had not seen Jeff since Sept.
Joshua continues to gain weight and now is 131 pounds.
His face is very full because of the weight gain and the predisone. Joshua is doing well except for the swelling in his feet, ankles and right leg. He does not do alot of walking except at the hospital and then that night or the next day he feels it.
His platelets are hovering around the high 70's (remember normal is 150,000 to 450,000) I was concerned but the doctor is not, that is common, he said. In fact all his blood counts are off but good for someone who has been through what he has been through.
Two of Joshua's medicines the predisone and the cyclosporine are keeping Joshua alive now. That is so strange to me as I look at him he looks so good and acts so normal. I sometimes tend to forget his 'insides are in major recovery now.'
Friday, Joshua received some immuneglobulin. A clear liquid given through his chest cathther over 1 and 1/2 hour.
it boost his immune system. They check his immune system each week when it gets to a certain low point they boost his immune system. This boost will last for a month and then if needed he will get it again this will go on for about one year. Joshua will have to get all his shots again from MMR to Influnza his body is like a baby's who has had none of it's shots. Now, you can see how his body is suceptible to catching anything.
Joshua is still doing nighttime feeding through his feeding tube. When he is able to get off of predisone the major complaint others have made is they aren't hungry. Before they stop and pull out Joshua feeding tube thay want to make sure he will be eating and not losing weight.
In a couple of weeks Joshua will be done with the medicine, methadone. He has this one because he had heavier narcotics in the hospital and they did not want him to go through withdrawals by not giving him anything.
We have much to be thankful for. We thank God we have all of you praying for us during the recovery time.
No matter what God is Good!
Joy on the Journey,
LesLie, Les, Rebecca, Sam, Champion Warrior Joshua

Tuesday, December 2, 2003 9:26 PM CST

Hi Everyone,
Les and Joshua went to the doctor today. He is very pleased with how Joshua is doing. The swelling is going down alittle but the feet still hurt. Dr.Frangoul wanted to do a ultrasound of Joshua's legs and feet but they could not get an appt. till Jan 4th! I find that hard to believe. Our Dr. is working on getting it pushed up. I guess if it is not an emergency it is put on regular schedule.
Next there were some mix up with the tapering of two medicines, predisone and methadone. We were not doing predisone taper at all( mix-up at the office we were not given the taper calender) and methadone, we were a week off.
Needless to say Dr. Frangoul was NOT happy with the whole situation. Predisone keeps the graft verses host at bay. Yet we need to get off of it as much as we can, for it is very hard on the bones.
The dietician gave Joshua some recipes for calorfic drinks. One is the Chocolate - Peanut Butter Shake
1/2 cup heavy whipping creme
3 tbsp. creamy peanut butter
3 tbsp. choc syrup
1 1/2 cup choc. ice cream
CALORIES 1070
any takers?

All in all we are doing just fine.
Joshua is doing homework every day
and is up to(nice) teasing Sam occasionally
Like sing a Christmas song putting Sam's name in it.
Fun to have my two boys together. That is one blessing out of all of this I get to be with them, LOTS.
God is good to us.
Joy on the journey,
In His Love,
LesLie, Les, Rebecca, Sam, Champion Warrior Joshua

Saturday, November 29, 2003 8:13 PM CST

DAY 53
Hello All,
Hope you all had a pleasant Thanksgiving. Ours was interesting. We ate here at the Ron House. I had no clean -up, that was great. I just made a sweet potato pie, Sam's request. Then,Joshua and I went to our home. Les and Sam came about a hour later , after the Packers lost.I let Joshua drive the last three or so miles. We got out of the van and he stopped me and said, "Listen, Mom, it is so quiet it sounds strange." He said he forgotton how quiet our neighborhood was and now remembers why he likes where we live. (Being in Nashville and hearing all the hustle and bustle sounds he had forgotton what quiet sounds like ) Joshua also said it is so bare, remember, he had left end of September and everything was quite lush then. Joshua was delighted to be home and forgot how good it was to be home for he is so comfortable at the Ron House. They left at 9:00 P.M. after enjoying sitting by the fireplace. I stayed for I had to work the next day.
The doctor visit went as usual. The feet,ankles,and legs are still swollen, with the left side doing better. His legs hurt a little other than this he is doing GREAT! Eating up a storm, working on getting him to drink more.
Thank- you for your sustaining prayers,
Joy in the journey,
LesLie, Les, Rebecca, Sam and Champion Warrior, Joshua

Tuesday, November 25, 2003 10:38 PM CST

Hi All, DAY 49
The doctor is somewhat stumped as to why Joshua is swelling so much in his right leg and foot. They want him to forgo his night time fluid of 500 ml IV, and see if that does it. Since Joshua has no major pain they have ruled out blood clots. This will be a wait and see I guess.
He did alot of walking for him and his feet were in pain tonight so we soaked them and then I rubbed his legs with some heavy duty creme and Vaseline,his legs were so dry.
Since Joshua is eating so much (mostly carbs) they are letting him go to 12 hour feedings instead of 24 so he is pole free during the day. He is to drink 50 ounces in liquid to make up for the loss of liquid from the milk It is great not to be attached to the feeding machine during the day.
Dr. Frangoul is allowing us to go home on Thanksgiving and then return at night. We will eat The Thanksgiving dinner here and go home. Joshua is excited to see the house and bring some things back to The Ron house. He wants to check out his legos and see what needs organizing, something which he loves to do.
He has the first 5 verses of Ps.91 Memorized doing better than Mom who only has 4 down.
Have a Super Thankful Thanksgiving
Joy on the Journey,
LesLie, Les, Rebecca, Sam and Champion Warrior, Joshua

P.S. We won't write again till Friday - next Dr. Visit

Tuesday, November 25, 2003 0:57 AM CST

Hi All
It is early early Tuesday morning. I have been waiting for a call back from the doctor concerning Joshua's swelling for now, not only is the foot swelled up but it goes to the kneecap and it is a soft and gushy kneecap at that.
The doctor who knows Joshua, said it does not sound infected and no need to drag him out ot ER. We have a dr. appt tomorrow I will let you all know as I know.
Continuing in prayer
Joy on the journey
Love,
LesLie, Les, Rebecca, Sam and Champion Warrior Joshua

Saturday, November 22, 2003 5:44 PM CST

DAY 46
Hi All,
Having a great hang out day today. We went to the park and saw a squirrel flopped on a board sunning himself. Would have made a great picture.
Yesterday was the doctor's. Joshua continues to have problems with the water retention in his feet. Because of this his blood pressure is up, the lower number is 90 when it is usually in the 70's. They gave him blood pressure pills and a pill to help expell the water. Joshua has one medicine for pain and one for nausea the rest of the 19 medicines are taken at 6:00, 8:00, 9:00, 10:00 A.M.
2:00, 4:00, 8:00, 9:00, 10:00 P.M. Many of these are liquid which have to be dosed out with a syringe. As you can see I would enjoy having Our Wonderful Nurses from the hospital here to help me. I moved the 4:00 am I.V. med to 6:00 am that helps a little as far as sleep goes.
Joshua is off the I. V. food in its place we have I.V. fluids with magnesium that run eight hours a night. We are still on the tube feeds until he can prove he can eat enough to sustain his weight.
They are lowering the predinsone,( was taking 120cc a day )which means the graft verses host disease may show its face in the form of nausea , vomiting, diarrhea, even bloody diarrhea, stomach cramping, rashes or fevers.
Keep those prayers coming, We love you all
Having a time of relaxing on the journey,
LesLie, Les, Rebecca,Sam and Our Champion Warrior, Joshua

Thursday, November 20, 2003 8:39 PM CST

DAY 44

Dear Readers,
This is Joshua journaling. My white count was 33 thousand the other day as you know, today, we went to the doctor and my white count was down to 18 thousand. So that is a Praise the Lord. They also said I had an infection (which was something expected by them)so we are on antibiotics for the next 5 days. We have to give it three times a day. Mom has to get up at four to put it in and then again at five a.m. to take the ball off and flush the line in my chest. Tomorrow we will go to the doctor. They drew new blood cultures today and will let us know what it shows tomorrow. I have more fluid and swelling in my foot and ankle it is getting hard to get my feet in my shoes.
I can walk alot easier now. With the weather being so nice, I look foward to the walks we take each day. Getting back to doing some school has been fun as well. I have missed doing school work while I was in the hospital. We are memorizing Psalm 91 for our bible class. I can not wait to see all of you again there is so much to catch up on in life. I'm sure there will be plenty of time for that later when I am able to be in crowds again. Thank you for the journals, cards and emails you have been sending. I love to read them all.

Love,
Joshua/family

Tuesday, November 18, 2003 6:04 PM CST

DAY 42

HI EVERYONE,
We are doing well at the Ron. House. Sam has joined us once again. The boys sleep in the bedroom and I enjoy their laughter and silliness.
We are doing some school each day. I want to get quickly back on the stick, yet I must remember Joshua can only do so much and then he is tired. I am so glad I school
Sam at home it makes life so much easier than carting him off to school each day .
Joshua had a doctor visit today . Weight is 127. All is well with the bone marrow the graft has completely taken.
God has seen us through and blessed us with a healing graft
Amen and Amen.... It is a miracle how well he is doing and I told God I would always give Him the glory if Joshua survived this transplant. I remember in one journal in September I wrote we are going to stand back and watch the glory of the Lord and glory we did see. Thank- you, God.
Joshua's white count is 33,000. Remember, normal is 4000 - 11,000. They are doing a blood culture to see if there is an infection. Prednesone one of his meds can mask fever and symptoms of an infection. The other thought is his graft is doing so well that it is rolling out the white cell at breakneck speed. We will foind out in 24 hours and promptly let all you prayer warriors know.
Rebecca is back in Texas, she was blessed spiritually and mentally. Great experience for her.
Bless you all
Joy on the journey,
Leslie, Les, Rebecca , Sam and Champion Warrior Joshua

Saturday, November 15, 2003 6:27 PM CST

Hi All,
Yesterday was the doctor vist. Joshua is now 127 lbs and
5'11 1/4 inches. Joshua has never been 127, very exciting. Before long I will have to get him bigger pants.
Joshua is doing so well he doesn't have to come back to Tuesday, what are we going to do with ourselves! The bone marrow procedure went with out a hitch. They are checking for leukemia cells and if Joshua's bone marrow is making B positive blood. This was the doner's blood type. The blood type change over usually takes 3-4 months, but they check as long as they are doing the bone marrow.Joshua is not total out when they give the procedure and he was moaning," Mom" I could here him down the hallway and I went in I know he won't remember, but still just to hear it.... As I look at his sleeping face while he is 'under' with the doctors and nurses all around him I still have tears come to my eyes, for my mind goes back to all the situations he has endured so bravely these past eleven months. I am praying this is the end to all that and he can be totally healed.
Joshua entertained two close friends of his today, they had fun and laughs, how happy I was for him.
Sam has some gastro- intestional troubles and is not allowed to be with Joshua till Monday. Sam had vomited 5 times at home on Friday yet with the doctor's permission had played his last game of football today. Sam does not shirk from work, even though he wasn't feeling the best he didn't want to let the team down and not play. What another champion warrior we have.
Joshua has swelling in his ankles and his feet do have a feeling of tightness, soreness. Dr. Frangoul has Joshua resting on the couch with his feet up. Other than that we are sailing... On our way to total healing. By Jesus' stripes Joshua IS healed. A done deal: Isaiah 53:5
Joy in learning on the Journey ,
LesLie, Les, Rebecca, Sam and our Champion Warrior Joshua

Thursday, November 13, 2003 6:19 PM CST

Hello Everyone, Day 36
How did you all like Sam's entry? Let's give him a hand.
After a late night(after 12:00am) we started for bed when we heard an intermittent beeping, we thought it was one of Joshua's machines (tube feeding and iv feeding)
was beeping. No, none of those were beeping, by this time, Sam was sleeping on the couch and I wanted to be doing the same. I thought, I'll just sleep through this beeping, I'm tired enough. That was not going to work for Joshua though. Joshua kept hunting for the orgin of the beeping. He said," we will laugh about this in years to come. " That may be true but I wasn't laughing now, I am a big baby when it comes to my sleep and I wanted my bed, and NOW! I finally figured it out, it was the fire alarm on our ceiling. I went to get a chair and I was about six inches to short. Isn't this special,I thought, I find the culprit and I can't do anything about it. Joshua said he would get it. So there is Joshua with his back pack of TPN (intervenous feeding) on along with his hook -up of feeding tube machine standing on the chair, "just hold me, Mom" he said. Well,he was my hero and we finally got to bed and Sam slept through the whole thing!
In the morning I made breakfast tacos. Ingredients
compliments of RMHouse frig. Joshua ate one and felt fine.
Les' friend Tom from Wis. drove over here and walked with us and he played ping-pong with the boys. Joshua had to rest half way through, other than that he did fine.
He had a quarter of a whole peanut butter and jelly sandwich for lunch.
At 3:00 we went to the doctor and were immediately wisked into a room (stay away from germs when we can) Joshua's three main nurses came over to visit and love on him. Adele, Linda and Yo. Sure are wonderful nurses,on all accounts.
We came home and took a nap for 45 min. I got Joshua some garlic bread and noodles. He is not able to have milk products,salad and only fruits that can be peeled. Maybe he will be more hungry later.....
We plan on having a relaxing night,despite many medicines at 8:00 and 10:00 pm. and the home health nurse
coming to instruct us on a new way of feeding Joshua through the I.V. (two machines for the I.V.instead of one)
Joshua need alot of magnesium so much that they can not run the T.P.N. and fats together for it gets bad after 24 hours.
At eight he gets medicine through his chest port lines to keep any fungus away from his lungs.But we will still have a relaxing time (I hope) Anyway we are in a home like condition and it is a blessing. Thank -you Lord for the Ronald Mc. Home.
Peace on the Journey
Love,
LesLie, Les Rebecca, Sam and our Champion Warrior Joshua

please pray for the negative showing of leukemia on the bone marrow test. They do not expect to see anything and say it is a mere formality just to make sure there is nothing. Amen to that!

Wednesday, November 12, 2003 9:50 PM CST

DAY 36

Dear Everyone,
Hello everyone this is Sam writing. Joshua is at the Ron Mac house. Yahooooo!!! I know everyone is happy about that. There is an other thing to praise God about. Joshua had one whole cheeseburger and some french fries.He let me eat the rest. I was happy about that. I'm really glad that Joshua, Dad, Mom and I are together, now all we need is Rebecca. Joshua is going to a clinic appointment tomorrow at 3:00. Mom has to take blood out of Joshua tomorrow. Friday, Joshua is going to have a bone marrow test. Pray that they find no leukemia in the bone marrow. Well that's about it hope you all have a great night and morning.

Sincerely, everyone in the family

Dad Mom Rebecca Joshua and Sam

Tuesday, November 11, 2003 9:35 PM CST

DAY 35

Dear Ones,
YES, we are going to the Ron.Mac house tomorrow. There is light at the end of the tunnel. The Lord has brought us safely through this situation. He has answered our many prayers for healing for Joshua. He will bring Joshua to total healing for His glory for us to see His healing power.
And know, our God is still in the healing business, Joshua is living proof of that.Thank-you God Thank -you Thank-you.
We believe we have closed the chapter in our lives for long hospital stays. After eleven months of this, I have mixed feelings for these nurses and doctors, cleaners have become family to us and quite familiar. Even though I am so glad to go and get on with our life I will miss being with the hospital staff and even trudging up here week end and week out. We certainly have had our share of rollercoaster times here. I have learned to trust God MUCH more and see beyond our earthly lives. I know God is much more interested in our spiritual growth than our earthly happiness. I also know I want God to say, "well done, LesLie," Whatever we have faced and will in the future I want my life and actions to be pleasing to God. What else really matters, when it gets down to it?
Say Yea for Sam and Joshua they finally get to be together after five weeks of non-togetherness.
We get a day off on Thursday no doctor appt. Then on Friday we have a bone marrow test to make sure there is no Leukemia.
Les' longtime friend, Tom, from Wisconsin is coming down on Thursday help with Sam for a couple of days(Thanks wife Karen for loaning him to us) Sam has his last Big game on Saturday. We certainly have had wonderful family and friends to help us.
We probably will write every other day and remember no news is good news.
With thank-ful hearts on this journey,
Love, LesLie, Les
Our Champion Warrior Joshua, Sam and Rebecca

Monday, November 10, 2003 11:26 PM CST

DAY 34

Hello everyone,
They always say no news is good news. Because of that belief, I almost didn't journal tonight. Nothing really new with Joshua's condition today. He's still having pain in his feet. Nobody seems to understand what is causing it. Even our most experienced nurse Adele could only love on her boy, while telling him she wishes she could help him. I believe with Adele simply being here with him, he felt a little better.
I know both Joshua and I would have felt better if our beloved Packers had played a little better. Very disappointing game to watch. We have to grab hold once more of the truth, that there are more important things to think about this season. So we go to bed thankful that we have only one more full day at the hospital. Wednesday night we should be able to take a family walk together WITH JOSHUA.
Leslie and Sam came to visit us today. I know that Joshua is always happy to see his family, yet I may have been more moved by the visit than he. It sure felt good to give my wife and other son a big hug. As refreshed Joshua will be going to the Ronald McDonald house, the rest of us are just as excited to live under one roof again. Let me take some liberty here and suggest to you workaholics out there, take a day off and have a family fun day. Don't ever take what you have for granted.
Joshua has actually begun getting hunger pains. It seems that his body after six weeks has finally figured out that this tube feeding is not natural. This of course is a very good thing. Please join us in praying that Joshua would not be fearfull of getting sick from eating real food. We have to cheerlead him through this transition.
Joshua really charmed all the nurses tonight. He was asking them to stick their head in to say hi. He would then proceed to tell them how special they have been to him. What nurse wouldn't like that. Our prayer from the beginning was that we would be a blessing and never a burden. I hope we have been able to accomplish this.
Thanks again for you most needed prayers.
Because of your faithfulness, we've had Joy In The Journey.
We Love You All,
Les, Leslie, Rebecca, Sam and Our Champion Warrior Joshua.

Sunday, November 9, 2003 11:38 PM CST

DAY 33

Hello everyone,
Thank you to all of you who prayed against the pain in Joshua's feet. This morning his feet hurt just a little. Tonight there is no pain at all. It was a rough couple of hours but God saw us through it.
Joshua had some nausea today and continues to have some stomach problems as we prepare to go to sleep. Please pray that he'd be able to get the rest that's needed for his full recovery.
Joshua's first two readings today showed his blood sugar over 200. The doctors decided if he had one more at 200 or higher, they were going to start insulin shots. I'm happy to report that the 3rd reading was 190. Tonight's reading was down to 171. Please continue to pray that his blood sugar level would stay down. The staff explained that it's very important to keep this as close to normal as possible. A high level could be dangerous to his organs.
I'm starting to believe there's something that needs to be broke in the night. Last night Joshua's feet started hurting with no explaination why. Tonight just as we were getting ready for bed, Joshua suddenly felt very shakey and dizzy. As I write this, we are waiting for the doctor to come and see him. Please pray that this also would leave him. Pray that he'd be filled with the peace that surpasses all understanding. It's kind of a scary feeling.
Before all of this night stuff happened, Joshua and I had a good boys day together. We watched some great football. " HOW ABOUT THEM TITANS " We learned that we missed a wonderful chance to meet Jeff Fisher,(the coach of the Tennessee Titans) on Saturday. We heard he was right outside Joshua's door. I had just left the hospital for about an hour, and Joshua was in the bathroom. When someone looked in the room, Joshua heard that someone say "there's nobody in here". Oh well. That was probably a one time shot too. So close and yet so far. We found out that the boy in the room next to Joshua has a connection with the team. By the time we could work a deal for the next visit, prayerfully we'll be at the Ronald McDonald house.
The plan is still a go for Wednesday. What the doctors want to do is start giving Joshua his steriods by mouth on Monday. His body has to accept the oral application, before they will let him leave the hospital. We are still prepared to stay as long as the staff feels it's needed. Now if it was up to us, we'd be gone yesterday. God knows when it will be safe for our Warrior.
I want to thank each and everyone of you for checking up on us. Thank you so much for your prayers.
Having Joy In The Journey,
We Love You All,
Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua.

P.S. The other day, I asked you all to pray for our daughter Rebecca. I need to correct something that I said that night. I mentioned that she was on a mission trip in China. Leslie kindly reminded me that Thailand is not in China. Rebecca is in Thailand. I figured that was close enough. Now everyone knows why the dad of this family doesn't teach the kids geography. I believe your prayers would have reached her needs just the same.

Saturday, November 8, 2003 11:28 PM CST

DAY 32
Hello everyone,
I can't believe that it's been 32 days after bone marrow transplant. It feels weird seeing Christmas trees in the stores already. If Christmas was ever going to sneak up on us, it will be this year. Each holiday comes and goes without much thought lately. The hospital staff tries their best, yet it still isn't the same. We were always a family that made a big deal with celebrating this time of year.
Joshua had a great day today for the most part. There is something new happening with his feet. The bottom of his feet are giving him a lot of pain. He was medicated pretty good yet still hurting bad enough to cry. I don't see him cry very easily, so I know his feet are really hurting. It is just about midnight. As of this writting, he is not able to sleep. They have just given him more pain medication. Hopefully this will help. Please pray that God would bring healing to his feet. It's kind of frustrating when pain comes out of nowhere. The staff will usually look at him with no idea as to how to help. They have even told us that he shouldn't be having this pain. That was all fine and good. I guess they thought they could talk him out of it. NOT!!!
This hospital and it's staff has been nothing short of wonderful. God has used so many in such great ways. Tonight was however a strong reminder that our trust is not in man. When all of us have done all that we can,(including me his dad) We need to call on the NAME THAT IS ABOVE EVERY NAME... JESUS
Speaking of our WAY MAKER, Joshua's blood sugar level has dropped down to 173. You may remember when Leslie was here, they took a reading of over 300. Leslie asked for prayer, we all prayed, and our WONDERFUL GOD answered. As of today, they have canceled the plans for insulin shots.
Thank you all so much for your prayers. I wouldn't want to go to sleep even one night without them.
There is still Joy In The Journey,
We Love You All,
Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua.

Friday, November 7, 2003 10:02 PM CST

DAY 31

Hello everyone,
We've successfully made our changing of the guard. Leslie worked today at the nursing home. She and Sam (our youngest son) enjoyed a wonderful rare day together. They will actually have 5 days to spend with each other because I'm on my 5 days off weekend. I'm blessed to be able to get away from work and be with Joshua for these 5 days.
Joshua's scope came back negative for GVH. Dr. Frangoul still thinks we're in the early stages. Too early to even show up. You may remember that we once mentioned day 30 is when everyone really starts looking for the new bone marrow to start doing it's thing. Well we are in day 31 and Joshua has been getting sick. We pray that this is what is supposed to be happening. It's never easy to watch my son curl up in pain, then often throwing up. There's enough good times to help us all endure. God knows what all of us can handle. He is always faithful.
The plan has not changed as of today. The goal is to be discharged on Wednesday to go to Ronald McDonalds. If all goes well, we'll be there till approximatly day 100. This would put us home around the end of January.
If you find us repeating information most of you already know, it's because we've recently picked up a bunch of new prayer warriors through a web-site named Hugs and Hope. Each month Hugs and Hope feature 4 new kids from around the country,who are often fighting life threatening diseases. Joshua is one of the new kids featured in the month of November. You can check it out by going to hugsandhope.com/ It's a great way to make a difference in so many kids lives. We've been touched by so many of the kids stories. Joshua is now known by many more people from all over this country and beyond.
There have been some of you who have wondered why Leslie has been knitting baby booties. Let me assure you all of two things..... She's not making them for us, and I'm not knitting while I'm here. Joshua and I do macho things like watch football, read the sports page, and enjoy all kinds of action movies. Every 16 yr old boy needs a healthy balance. My sister Linda had him doing pretty crafts when she stayed with him.
Over all Joshua is still fighting hard. Most days he has to endure sick and hurting stomach. He still bikes 5 miles or better each day. He gets himself dressed in street clothes. Showers himself. (not in that order) He has had some successful bids on e-bay. I think he's done about as good as could be expected with the confined space he lives in. I don't hear him complain very often if ever. He amazes me.
Please continue to pray for comfort as the new bone marrow begins to graft with his body.
Pray that the GVH (graft vs host disease) would be only what's needed. Nothing more and nothing less.
Please join our family in praying for our daughter Rebecca. She's in China on a mission trip with her school.
Thank you so much for checking up on us today.
We are comforted by your many prayers.
Having Joy In The Journey,
We Love You All,
Les, Leslie, Rebecca, Sam and Our Champion Warrior Joshua.

Thursday, November 6, 2003 7:03 PM CST

Dear Ones,
We had a GREAT morning and afternoon. the steroids which they started yesterday calm down the GVH, which is his immune system going into overdrive with the steroids the body starts to bring on normal body functions. No vomiting today, Thank-you God for that rest. Joshua was exercising with P.T. today . He was using a four inch wide rubber band so vigorously that he pulled out his n.g. (feeding tube) in the process. Sounds like a great day doesen't it. ha ha. Anyway way he put in his feeding tube
(first time) it was not placed correctly in his stomach so it was taken out and his nurse put it in.
Joshua was dressed and sitting in a chair when Les, Linda and Sam came to visit. Joshua and nurse Yo danced about 15 minutes to some Christian music of Joshua's.
Well after that excitment, his body especially his back was not happy after all that exercise and needed a backrub to relax.
There were also a couple of tummaches/cramps so we had a slow late afternoon and lying sleeping on the bed in the early evening.
A prayer request, when on tpn (intervenous food)
and steroids sometimes one becomes a diabetic. This last only when on these two things. Joshua had a blood sugar of 300 today so they are checking him these next couple of days and see if this continues. If his glucose continues in this vein staying above 200 he will have to start insulin shots. This should not be for long.
He is not eating or doing feeds they should start these in a couple of days.
I know all of this might sound disconcerting but he is getting better and they are planning on him leaving next Wednesday.
I saw a signing in the guest notebook which said Joshua went with his parents to church.Joshua has not done this and must wait for a year to go to church with us.
Les is taking over tomorrow and Sam and I will be together.

God is giving me his joy and I am grateful.
His joy on the journey.
LesLie, Les, JOSHUA Sam, and Rebecca

couple of days.

Wednesday, November 5, 2003 9:32 PM CST

Dear Ones, Day 29- The night is finishing off much better than this morning. Thank - you Lord the endoscopy went well as also the feeding tube.
Joshua was not a happy camper when he awoke from the 'surgery biosopy'. His stomach and throat hurt and he wanted me at all cost by his side holding his hand with both of my hands. This is how we traveled from the recovery room to the elevator thru the hallway to his room. The medicine Versed which they give to put one asleep makes one weepy when one awakes and Joshua was No exception. It took a good hour and half before he had peace enough to fall back asleep. They had given him some meds to relax his stomach but he was just too upset to let it work. His Aunt Linda was with us and she told him to take some deep breathes that along with the meds, praise and worship music and praying for him to relax finally got him to a peaceful state and he fell asleep for a couple of hours. Joshua got up about6:30 p.m. and is doing much better, even to sitting upright in the chair and bike riding. The scope was done to see if the vomiting was due to GVH (graft verss host disease) or due to C-dif an infection due to no good bacteria in the gut. This is due to so many antibotics taken, which kill the good bacteria. when this happens the bad bacteria takes over. They have not received the results back. They know he already tested positive for C-dif and is on medicine for that. Since the vomiting has not left they are going to assume he has GVH and start him on steroids and we should see a change in 24 hours in all the body functions that have gone awry. Then if all goes as planned we should be at the R.M. house Monday or Tuesday. Hopefully we are done with the hospital then ;)
Sam and Les and Auntie Linda were here today . No, Sam still must stay out in the hallway. Today, Sam, sang the Erie Canal song to me on my lap on a chair in the hallway unbeknown to him a student doctor was listening and smiling to Sam's happy voice. Later, Sam met this student doctor and they had some conversation. Sam is thinking about being a doctor or a nurse. This is a good place to be and see what being in a hospital is all about.
I have been relearning, (it has been about 30 years) to knit, Linda is helping me read knitting directions. With her help I did make one baby bootie, soooo cute. Anyway I will have to make the other one mostly by myself. Oh, Boy, watch out..
Life is Good and So is Our God,
Joy on the journey,
LesLie, Les,JOSHUA, Sam. and Rebecca

P.S. Joshua is vomiting right now so pray his tummy can relax and he can have a restful night. also Joshua's little buddy,Devin,who recently had a transplant (6 months ago is still in the hospital and was in contact with a nurs who had chicken pox. this is very hard on a new immune system please pray he suffrs no ill effects from this contact. Thank - you.

Tuesday, November 4, 2003 10:29 PM CST

Dear Ones, Day 28
I was dissapointed that my last two journals did not reach the page for you all to read.
Today Joshua went for an endoscopy. An endeocope is a tube with a very small camera at the end of the tube. They can see the pictures on a screen next to them and enlarge the picture if need be. This tube goes down the throat. They put a person out but not totally, they can still respond to commands. Anyway, they knew they would have to give Joshua more medicine than the average child, since he has had so much medicine this past 11 months. Even giving him the extra medicine he did not 'go out' enough to complete the procedure. They could not give him anymore for his blood pressure was going down and they were concerned he would forget to breathe. They put it down his throat and then he motion to them to take it out, which they did.
Now tomorrow we will try it again only he will be under heavy ansthesic and will not know what happens. He threw up his feeding tube tonight. They will put it back in him during this time so he won't feel that either.
We will find out what is going on tommorrow ot the next day and then they will know how to treat. Will let you know as I know.
Pray for rest in body mind and spirit for Joshua
On one of the journals you all did not receive I asked for prayer for Rebecca that she would accomplish all that the Lord has willed her to do during this mission.
Thank- you for your faithfulness,
Joy in the journey,
LesLie, Les,JOSHUA.Sam and Rebecca

Monday, November 3, 2003 9:10 PM CST

DAY 27

Hello everyone,
As you have all figured out by now, we have been technically disabled for a few days. We don't know what caused it, but thanks to my mother in law reporting our difficulty, we are now back. Thank you Marlene.
When we last wrote everyone, we had our wonderful plans to go to the Ronald McDonald house. We moved in as a family, unfortunety without our first born son. The day we were supposed to leave the hospital, Joshua got pretty sick. Dr. Frangoul was not comfortable letting him go with GVH possibly starting up. ( GVH is graft vs host disease.)
That was last Thursday. Since then he has continued to show lots of signs of GVH coming in.
He's been very sick with naseau, throwing up, stomach pain along with other things. Please pray for comfort through this necessary process.
We don't know when Joshua will actually be able to leave the hospital. The doctors do not want to take any chances with Joshua. Once he would leave, he would also lose the hospital room. There are only 5 special mylo rooms and patients always waiting for one of these rooms to become available.
Leslie and I are more than ready to leave the hospital and be together as a family again. We've had a small taste of family this past weekend. We even got to go to church together for the first time in months. My sister Linda is visiting from Texas. She is a nurse and is staying with Joshua at the hospital, allowing Leslie, Sam and me to be together. We don't however want to leave the hospital until the staff is comfortable with us doing that. We learned to trust their judgement. We will keep you up as we get closer to that day.
It's good to be able to communicate with you all again. Thanks again for caring for us.
We love you all,
Having Joy In The Journey,
Les, Leslie, Rebecca, Sam, and our Champion Warrior Joshua.

Special Note: Please remember our daughter Rebecca when you pray for us. She arrived early Monday morning in China on her 2 week mission trip. While so much of our time is focused on Joshua these days, It's good to know that the Lord is using Rebecca in such a wonderful way. We're also very proud of her as we are Sam for enduring so joyfully our new journey.

Wednesday, October 29, 2003 11:14 PM CST

DAY 22

Hello Everyone,
Everything is going as planned. The arrangements for the Ronald McDonald house have all been made. Once more the Lord has blessed us by giving us the largest suite. The people that were in the suite just happened to go home today, with us needing a room tomorrow. Sounds like a God thing to me.
Joshua was doing great today. I Les, got to the hospital this morning after working the night shift. Leslie needed to do her thing at the nursing home. They would really miss her if she missed even one week. Those ladies really look forward to having their hair done each week. Leslie and I had a whole 15 minutes together while we changed guard. This was actually better than Monday when we literally passed each other on the highway and waved. That bothered me, yet I had to remind myself that this is a temporary season of life, and God will see us through it.
Leslie and I would like you to pray for our son. This time we’re talking about Sam. He seems to have come down with something. I’m planning to take him to the doctor on Thursday. If he is contagious, he will not be able to stay at Ronald McDonalds with his brother. It’s been tough enough as he has not been able to go into the hospital room this past month. I’d hate to have to keep them separated any longer. He will however have time to recover. We were told tonight by Dr.Frangoul’s nurse that the plan right now is 100 days at Ronalds house. It’s much longer than we thought, yet if that’s what the experts believe is best, we will make the best of it. We’ll have our family reunion with Rebecca no matter where and love it.
Thank you for caring,
We covet your prayers,
There’s Still Joy In The Journey
We Love You All,
Les, Leslie, Rebecca, Sam, And Our Champion Warrior Joshua

Thursday, October 30, 2003 10:43 PM CST

Hi Everyone, DAY 24
` Today Joshua started to show some beginning signs of GVH. Dr. Frangoul decided Joshua needed to stay in the hospital maybe till Monday or Tuesday. Joshua was dissapointed but is doing ok with it. Personally,as much as I want to leave the hospital I was a little relieve. I have so many meds to give him along with the TPN and NG feedings plus I give an anti- rejection medicine and the anti-fungus medicines intervenously, along with the medicines given at all times of the day. They also want me to take blood samples. Needless to say I was a little overwhelmed. These next few days I will get use to the idea and start to get into the swing of things. They said soon all of it will be old hat to me. We have done some of this before,it is just all the new things I have to learn to run Joshua's schedule smoothly.
Joshua said he felt sick to day. Did some vomiting today. Hopefully he is feeling better tomorrow.
Les' sister Linda is here to take care of Sam. Les took him to the doctor and he had allergies no cold, thank- you Lord. I would NOT of been a happy mom had he been sick and I could not be there to take care of him. We are happy Joshua and Sam get to be with each other as soon as Joshua is discharged.
Thank - you for your constant prayers.
Learning joy in the journey,
Love ,
LesLie,Les,JOSHUA, Sam and Rebecca

On another note our dear daughter, Rebecca, is leaving for Thailand, on Saturday for about two weeks to do mission work . Pray for safety and that she accomplishes all God has willed her to do .

Wednesday, October 29, 2003 11:14 PM CST

Tuesday, October 28, 2003 6:40 PM CST

DAY 21

Dear Ones.
The count down is on,we leave on THURSDAY for the R. Mac. house, and there is a suite for us. This is what we need since Joshua cannot be around people.
We have had a good day in general. A little vomiting,
which loweres my chances of getting Joshua to eat.Let me say that we are talking a cracker or two and a teaspoon of soup. Joshua has to get use to eating with his mouth once again. It is slow going to bring the desire to eat back in this boy. Not in the 'mood' at all. We do have him swallowing his pill and drinkig water.
His feeding tube is up to 30 cc, every day we move it up 5cc more.
A young hospital buddy of Joshua's, Devin, is back in the hospital. He had a bone marrow transplant earlier this summer. The doctors say it is a 99.9 chance that Joshua will come back in the hospital with chronic GVH which occurs day 30 and over This is better than acute GVH which occurs before day 30.
Joshua exercised and showered today and is sitting up in a chair without me having to tell him to. We did a little homework today and he is now looking at a homeschool catalog.
Amy and Chris Geil, yes, we did receive your packet. The boys had wonderful bible verses along with nice handwriting.
Thank -you for your constant prayers. thay have brought us through thislong season with joy.
Continue to pray for desire to eat
No nausea or vomiting
no back to the hosital stays

Thank -you again,
Joy in the Journey
LesLie, Les, JOSHUA, Sam and Rebecca

Monday, October 27, 2003 8:09 PM CST

Good Evening,
I had a 24 hour leave and have come backed refreshed,
even though my brother,Todd, beat me at the war game Risk. Let's just say I let him. Sam had lost out to the game earlier.
I will continue to sing of the glorious things our God is doing in Joshua's body. His white count is 5200 and neutrphils are 60. Both of these numbers are in the normal range. Even though these numbers are in the normal range the cells are working like an AIDS patient. The cells are weak ones and can easily sucumb to sickness. It takes nine - twelve months for the cells to become pretty normal, like ours. Therefore there is no church or school or crowded areas. He needs to stay away from children. Being outside is disirable. He and brother Sam will be able to be together again after three weeks. I am SO happy for them both. Even though they are 4 1/2 years apart they are very close.
Next Praise Report. They are planning to send us to the R. Mcdonald house on Thursday! They said Joshua will be sent home the earliest of any non-relatd donor they ever had here. Before the earliest 28 days. Joshua is to be out in 23 days.I was talking to one of our favorite nurses and she was so excited and said, Leslie, you just can't believe how well he is doing. We were all so afraid after those nine weeks (Dec- February) we didn't know what would happen with the bone marrow transplant. I said it was the prayers and she agreed. We also discussed the blessing of no more Crohns. God has said," Yes, and much much more" to all of our prayers.
Praising God On the Journey
Thank- you for Praying for our son,Joshua

Love, LesLie,Lester, JOSHUA, Sam and Rebecca

Sunday, October 26, 2003 11:13 PM CST

DAY 19
Hello everyone,
You prayer warriors must be praying because Joshua had a great day today. Let me list some positives.
1. Joshua had no fever
2. He was able to start drinking water today. ( remember the sores in his mouth and throat wouldn't allow him to swallow food or drink for at least a couple of weeks now.)
3. He was able to take a very restful two hour nap.
4. Joshua said after taking a shower today that he felt GREAT! ( first time in a long time )
5. Last but not least, his white counts are 2,400 today. Neutrophils were in the 70's.
I now invite you to join me in shouting a big PRAISE THE LORD!!! God is so faithful. He is showing His hand everyday of Joshua's life.

This is Les by the way. I came up to the hospital today with Sam and Leslie's brother Todd. Joshua had a wonderful visit with his uncle. I'm on night shift this weekend so I was able to let Leslie go home tonight and spend some time with her brother and her little button.( her special name for Sam.)
Joshua and I watched a movie, a little football, then off to bed. We did sneak in a good father-son talk and prayer. I miss being able to play ball in the yard with both of my boys, but for now I'm satisfied anytime I can be with him. I know by the grace of God, one day we will once more have our fun in the sun.
Joshua while doing better, did ask for prayer for the following .....
Nausea, Leg Pain, A Solid Nights Sleep, sore throat. The sores are all gone, now he just has the affects of them having been there. Please pray that as he tries to eat again through the mouth, he'd be able to keep it down.
Every day is a new day, with a new reason to PRAISE OUR KING! Thank you for your faithful prayers.
There's Joy In The Journey,
Love you all,
Les, Leslie, Rebecca, Sam, and our Champion Warrior Joshua.

Saturday, October 25, 2003 9:53 PM CDT

DAY 18

Dear Ones,
It has been a tiring day, got up early 5:30 am, for Joshua was not feeling well. When he did sleep he was unsettled. He got out of bed at 2:30 to shower and bike and said he just didn't feel good. This VRE virus is wearing also. Remember this virus that Joshua has, basically confines both of us to his room. I, by nature am not a very social person but it is even starting to get to me. They don't want me to be with other parents lest I transfer this to them. When I go outside, which when I do I must walk directly out of the hospital, not stop inside the hospital for anything because I could contaminate someone or something. It is wearing to be so particular. I miss hugging people around here also. It is amazing to me how the little things can get one down. Well enough of that. On to good news!! We have received lots of encourging news today. Joshua's counts continue to climb. White cells are 1.9 and the neutraphils are 71.1. If he continues to do this well, we may be looking at ALL of us leaving for the Ronald Mcdonald next weekend. One thing that may stand in our way is fevers. Joshua had 101.1 tonight. The good news is It is going down. Pray it completely leaves him. It seems he has some Graft verses Host disease as he has the fevers and some daily vomiting along with tummy pain. This is nothing out of the ordinary and we pray it
doesn't get out of hand. We see light at the end of the tunnel and pray if God sees fit, the hospital season in our life will be over and we can move on. If it is to be around for a while longer, I pray His Joy all over us, so we can bless the nurses and doctors who take care of us. Most of all bless Him, who loves us so.
If you can leave us a note on this web page, let us know how you are doing and what you are up to. Thanks ...
Learning Joy on the journey, God's Blessings on you all'
Love,
Leslie,Les, JOSHUA, Sam and Rebecca

Friday, October 24, 2003 10:50 PM CDT

DAY 17

Dear Ones,

We just finished watching "Sound of Music".
Now down to business of writing the journal.
Joshua has a low grade fever of 100. So keep that situation in your prayers.
The good news. Joshua is at 1.200 white cells and 66 neutriphils (neutriphils are a division of the white cells which fight disease.) Multiply 1.200 by 66 and it is 792.
Anything greater than 500 means the ingrafting is taking place. Dr. Frangoul said with that number, we really do not need to see any graft verses host disease. We will agree to that .
He really is doing quite well. I think God loves to give surprises. The doctors are amazed at how boring he is and how he is taking the milk feeding through the tube. GOD GETS THE GLORY, GREAT THINGS HE HATH DONE.
Have a great night
Amazement on the journey,
LesLie, Les, JOSHUA, Sam and Rebecca

Thursday, October 23, 2003 6:03 PM CDT

DAY 16

Greetings from Joshua's hospital room,
My parents left for Florida after ten days of being with Sam. Thank-you Dad and Mom for all the help you provided,from cooking to homework to football practice. A big thank-you to
Sue Golab who stayed with Sam until my brother came to the house
My brother,Todd, who is from WisCONsin(that is for those of you who love my nasal accent)is now watching the fort while Les and I are working or sitting with Joshua.
The report of Joshua is he now has 500 WHITE CELLS!
The reason he is a week earlier than general transplants is they have been giving him neupogen shots to get the white cells to shoot up. They do not want to give the fungus, aspergillus, a chance to flair up. For that is a dangerous situation to be in with no white cells. Last time it put him in ICU and they did not believe he would come out. But, our God had other plans for him, to prosper him and give him a hope and a future.
He received a three pack of platelets today should of had four but they were low on them at the blood bank. Remember, platelets stop a person from continous bleeding There is no change in the bilirubin, still running a little high. He did throw-up a little today and had some pain in his stomach. It is a strange situation we are in.We hate to see him feel miserable but we need some of these symptoms to show the marrow has taken. Lord, you know how strong the symptoms need to be for Joshua's body to fight off leukemia so, we just put his situation in Your hands.
Thank-you for taking care of it.
Have a good night
Joy in the journey,
LesLie, Les, JOSHUA, Sam, Rebecca

Wednesday, October 22, 2003 6:40 PM CDT

DAY 15

Dear Ones,

Mom's back, after a five day leave. I reported in at 9:15 p.m. last night. Joshua and I were in bed by 10:00,I guess we were both tired. Les had taken
me out to eat and we finished off the night at 31 Flavors, ( one child's scoop for me, please.)
Joshua was up during the night
ridding himself of mucous
so he was a tired boy this morning.
The good news is, JOSHUA HAS 100 WHITE CELLS!!!!
The healthy person you remember had 5000-10,000. It is a start we only can go up from here. Dr. Frangoul said, Joshua's bilirubin is up again ( yellow in the eyes and problems with the liver) so that has to be watched.They took blood cultures for Joshua had 100.3 temp. They usually wait till 100.5 but if Joshua has something they want to catch it early.His stomach had a little cramping and nausea so they put the milk feeds back to 20 ( was 30 for 12 hours.) As Joshua lied curled up on Mom,s bed (he calls it the Healing Bed) He said, "this is the first day I feel sick." He did perk up in the afternoon to do all of his exercises. We have to keep him up and about at least sitting up for we don't want him to get pneumonia.
Today, Joshua talked to Sam, his brother at least 1/2 hour. Good brother time for them.
Today I took a walk out to the old college part of Vanderbilt. Talk about an atmosphere of history and
knowledge surrounding the over-whelmingly lovely park like setting. Here is where autumn look glorious and parades her showy colors among the bevy of matures trees with bright sunlight to accent the leaves loveliness. The old college buildings with their Roman arch doorways and worn out cement brick exterior gave the finishing touch to the picturesque look.
It is 7:45p.m. and Joshua had some pain killer and anti-nausea medicine and fell asleep with his mom's arm around him.
And,so,I will end this journal with thanking God for Joshua's doctor, Dr. Frangoul, who watches over him and checks the smallest detail. For the nurses who work so hard to make Joshua comfortable and put a smile on his face.For the many others who are helping and cheering Joshua on from the PT workers to the cleaning lady (Hi, Tina) Thank you for their cheerfulness and through work. Lord,bless them all.
Having Joy in the Journey,
LesLie, Les, Joshua, Sam and Rebecca

Tuesday, October 21, 2003 9:19 PM CDT

DAY 14

Greetings People of God,
This is Joshua Journaling. I am feeling better today. I was on the bike for ten min. I did the stepping stairs 40 times. I did a little bit of school and I got to talk with some of my good friends. Today my parents are switching out so I will have my mom tonight. When the Doctor came in this afternoon he said I am doing much better than expected. Which means I might be able to be home for christmas.
My throat still hurts and I have alot of mucus. My legs have still been in pain and I have been feeling nauseated.
I thank you all for the journals you have been writing to me. They are encourging to me. I pray God would bless you all this night.
Love,
Joshua

Monday, October 20, 2003 9:27 PM CDT

DAY 13
Hello everyone,
WHAT A MIGHTY GOD WE SERVE !!! Today the bone marrow doctor ( after being off for the weekend ) came in to check up on Joshua. He said some pretty amazing things. First Dr. Frangoul stood back, looked at Joshua and said " you have fooled me, I thought you were going to have a lot of problems this past week. You look great." Then after checking his mouth he said, (these were the doctors words) " your mouth sores are healed. " This is the doctor Leslie and I have been trying to help see God's work in all of this. He's been knocking on wood and things like that. Thank you Lord for showing yourself to the staff here.
Everyone here is looking for Joshua's new bone marrow to show itself in the next day or two. It's hard to believe that Tuesday will already be two weeks after bone marrow transplant. We even heard that we may be able to come home sooner than anyone had thought. What a blessing it would be for all of us to be together for Christmas again. Rebecca is already scheduled to be home. Now all we need is our Champion Warrior to make the family reunion complete.
I need to share one proud dad story with you. I came to visit Leslie and Joshua last week. During my short visit, I shared with Joshua that the Lord brought to my attention Psalm 103:1-5. I also told him I thought that God wanted this read each day either by Joshua or over him. When I came a few days later for my birthday, Joshua gave me a birthday present by speaking those first five verses of Psalm 103 from memory. I was blessed to see him take my request and go above and beyond what I had asked.
Tomorrow night Leslie and I will have our changing of the guards. I've enjoyed the time with my son, and appreciated the opportunity to share with all of you for these last 4 nights. Tuesday you'll get to hear from Leslie again.
Thank you for your continued prayers,
We're Having Joy In The Journey,
We Love You All,
Les, Leslie, Rebecca, Sam, and our Champion Warrior Joshua.

On a closing note: To nurse Linda and the gang. I know you'll be glad to see Leslie, but know that I'll be back. (they all love it when it's boys weekend.)

Sunday, October 19, 2003 10:22 PM CDT

DAY 12
Hello everyone,
Joshua and I had another boring day. As I explained in yesterday's journal, boring is good when it comes to Joshua these days. He did require some blood and platelets this morning. I think all the football games on t.v. today helped Joshua keep his mind off of some of the pain and discomfort he has to endure most of the time. Especially that exciting Titans game. We choose to forget about our beloved Packers. It's probably good that we have a new perspective on life, because our Wisconsin teams are not giving us a lot to cheer about lately.
We received a nice visit from Leslie, Sam, MiMi & PaPa. (Leslie's mom and dad.) Nobody other than Leslie was able to come into the room. The others were able to use the nurses phone across from our room. It at least gives them the ability to talk to Joshua and see him at the same time. That's about as good as it gets for visitors right now. The hospital is very firm with visitation rules for transplant patients.
I have a great report for you. Joshua rode the bike in his room for 45 minutes today. I didn't do that and I'm healthy. After about 15 minutes of riding Joshua bumped his knee on part of the bike frame. It hurt him pretty good. Just like everything else that challenges him, he didn't let it stop him. He got right back on and continued to do his best impersonation of Lance Armstrong. What a fighter. He must of hit his knee pretty hard, because now it's all swollen and black & blue.
For those of you that know Joshua at all, you know he has a quick wit about him. The nurse was all set to give him the neupogen shot. (he gets these each night in the arm to help stimulate cell growth. It's the only time he actually has to a take a needle into the skin.) When she asked him which arm he wanted to use tonight, he pointed to one of my arms and said " THAT ONE ". The nurse and I both had a good laugh. One minute he'll be almost in tears with pain and the next pulling a prank on one of the nurses. He refuses to let this situation run his life. I love his staying power.
While we're trying to stay upbeat and enjoy life the best we can, it's still gets kinda tough most days. Like yesterday, I want to finish with some things you could pray for.
Joshua was crying today because the sores in his throat hurt so badly.
Though Joshua has not actually thrown up for a few days now, he still gets some pretty hard nausea.
He is still getting pain in his feet and legs. The feet hurt from radiation burns. The reason for the leg pain is still unknown.
He seems to be developing a rash. Everyone thinks this could be the beginning of G.V.H. disease. That basically means the new marrow is starting to mix with his body. They want some of this but not too much. Right now it itches a lot.
We're getting very close to when we're supposed to start seeing the effects of the transplant. Please pray that the new marrow takes, without getting out of control.

Thank you all again for your faithful prayers.
Having Joy In The Journey,
Love You All,
Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua.

Saturday, October 18, 2003 9:47 PM CDT

DAY 11

Hello everyone,
I have some good news. News that I wouldn't have considered very good prior to our present situation. Are you ready for the big news? JOSHUA IS BORING. That is what we were told by Dr. Frangoul, the bone marrow doctor. He did conclude his statement by telling us that at this time, boring is good. There's really nothing going on with Joshua right now and that's the way we like it.
Dr. frangoul is looking for some white cells to show up maybe late this week. This will be the first signs of the new marrow showing up and doing it's job. Until then we just keep playing the BORING waiting game.
Father and son are having a good time, with the exception of the Wisconsin Badgers football game we watched on t.v. today. I'm thinking that watching our favorite teams play while we're together would be good for us. Instead it's been a little frustrating. Things could be worse. ( as my loving and wise wife likes to say.)
Even though Joshua is doing so well with the big picture in mind, he is still experiencing some aches and pains that would probably make most of us miserable. Please help him by praying for the following...
Leg pain
sores in mouth
mucus in the throat
nausea
burns on feet and hands
blisters on ears broke open. Pray against infection.
Joshua had a slight fever tonight, pray against this.

The amazing thing is if you spent time with Joshua, you wouldn't know that most of these things were bothering him. He simply lives with these conditions without complaining. Now you know why I call him my Champion Warrior.
Thank you so much for standing with us through this long journey. Without all of you, we couldn't proclaim there's Joy In The Journey.
We Love You All,
Les, Leslie, Rebecca, Sam, and our Champion Warrior Joshua.

Saturday, October 18, 2003 0:10 AM CDT

DAY 10

Hello everyone,
It's boy's weekend !!! You know what I mean, when moms away, the boys will play. Probably the only difference is with me here, we give the nurses a harder time than when Leslie is here. We kid around in a friendly way of course. I have to admit, I've already heard one ask, when is Leslie coming back ? I was more than happy to let them know that I'd be here till Tuesday night.
It's great to be able to be here in person. The phone is nice but it can't replace seeing my son face to face. I'm so glad to be able to let Leslie go home for 5 days. She should be good and refreshed by the time she comes back on Tuesday night. Please join me in asking God to bless her time with Sam and her parents, visiting from Florida.
Dr. Frangoul was absolutely beside himself today. He came in and could not believe how good Joshua is doing. He said something that made me what to shout. When he saw Joshua's feeding tube set on 25 cc's per hour, he commented that in over 4 years, Joshua is the first patient to even be able to continue the tube feedings at any setting. At this stage of time after bone marrow transplant, he stated that he has never seen anyone tube feed without getting sick. Let me remind everyone and especially those of you who don't know Joshua's history. Joshua came into the hospital back in December of 2002 with not only leukemia but also with Crohn's disease. ( a combination they had not seen before.) Starting with the very first chemo, Joshua has given the entire Vanderbilt staff fits. The stomach and intesinal lining have continually flared up, even to the point of emergency surgery to remove a foot of his lining. He spent time in ICU because of the pain. Joshua is the last person in this hospital, this staff would say has a chance to tube feed after transplant. And yet he is the ONLY one in four years who's been able to do it.
I have a question for all of you reading this.......
IS THERE A GOD IN HEAVEN OR WHAT ? IS OUR GOD HEARING THE PRAYERS OF SO MANY SENT UP FOR OUR CHAMPION WARRIOR ?
Joshua really is doing great. I happen to be a dad that believes God answers prayer. The reason Leslie and I both can have the faith that we have in our son's total recovery, is because of so many of you supporting us with your love and prayers. It's hard for me to think about it without crying. Thank you all so very much for standing with us in faith for Joshua's healing. God is amazing the doctors without them knowing that it's He. ( we're trying our best to let them know.)
May God Bless You As You Have Blessed Us.
We Are Experiencing Joy In The Journey.
We Love You All,
Les, Leslie, Rebecca, Sam, and our Champion Warrior Joshua.

Thursday, October 16, 2003 9:25 PM CDT

DAY NINE
Dear Ones,
Today was good, for one reason Joshua felt good enough that I could take a hour walk OUTSIDE. Did you all know Autumn is here? Joshua forgot that it was Fall and that the leaves were changing. Beinging in the hospital as long as we have, 168 days since December 19th of 2002,( not counting clinic visits and testings days) one starts to get the institutionalized feeling. Our world is our room and one tends to forget there is a world out there. I can feel it being here just a couple of days. Now, with the VRE virus it gets tiresome to put on gloves and gown just to walk out of Joshua's door that I tend to stay in here more than ever. I know know how healthy nursing home patients feel, one's awareness of the outside world is gone and you don't even realize it till you are outside again.
I stay busy. In the morning I walk up and down the stairs three times (1st - the 11th) in the hospital and then ride the bicycle in Joshua's room as he occasionally watches Matlock. As you read I am practicing sign langauge, some of the nurses know it too so we practice together. Joshua and I do our Bible reading and listen to praise and worship tapes. We also have character building listening tapes and Dr. Grant's humanitities lectures on tape to wade through. Then there is the journeling on Joshua's web page.
We usually watch one movie a day sometimes historical sometimes entertaining. Sometimes Joshua does word puzzles. He tries to fit in a little Gameboy everyday, it does seem to take his mind off the pain he may be having. We try to do some vocabulary each day, the key word here is try.. Then we have the doctor visits, in room x-rays, breathing treatments, nurses visits to give the pain killers and the regular many meds. Then there are the countless little things I do for Joshua to make his day better from rubbing cream on in his hands and feet to laying my hand on his stomach when it hurts. We have even watched some of the good Oprah shows. Some of the nurses want to practice Spanish, I said I have some tapes at home so hopefully we can string some words together and have some fun doing it. It certainly is not boring in here.
Now I hope you have a feel for a day in our life.
Joshua started out a little rough in the breathing department today. So much so that they ordered extra x-rays to see if there was something in the lungs that shouldn't be there. It came back as no change from the Monday X-rays.Thank-you God.
His kidneys are working much better and all are please on the urine output.( I never thought I would be discussing
that subject.) Thank- you for your prayers on that.
Dr. Frangoul said his liver is getting better too, which was another praise report.
Today his mouth was bleeding so much that
Dr. F. put him on Dilaudid as needed. This narcotic is a step up from morphine to help relieve the pain from the mouth sores. The huge blister on his ear broke open in the middle of the night and we put cream on it. Pray no infection here. Lately he had been getting stomach pain and nausea. He said the stomach pain is not like the Crohn's pain of the past.
In fact they do not give Crohn's meds anymore for with the surgery of the intestines in January plus the chemo and radiation and the new bone marrow blood given to him they believe it is long gone, YES, we will receive that.
Les will be with Joshua for the next five days I will work my one day and enjoy Sam and my parents and my Mom's cooking.YUM!
Joy in the Journey,
Love in Him,
LesLie

Wednesday, October 15, 2003 7:34 PM CDT

DAY EIGHT

Dear Faithful Ones,
Monday, my parents came up from Florida to take care of Sam. They along with Sam and Les came to the hospital to see Joshua and the hospital. They were duly impressed with the cheerfulness of the staff and felt Joshua was in good hands. They thought it was an exceptionally large hospital.
Today, We also or rather I had a enjoyable visit out in the play area with Vickie and Lydia Pugh and Annie and Ielyn Bass, friends from church .
After the pray request was put out this morning Joshua's kidneys excreated 1500cc of urine compared with 450cc of the same time period yesterday. Isn't that cool how quickly God answered this prayer. Nurse Yo and I thought so.

Prayer requests are for the mouth and throat sores that were so bad, they were bleeding today.
Please pray That his organs continue to work properly.
That the blisters on his ears do not pop (infection potential)
and that we continue to show the joy of the Lord.
Joy in the journey,
Leslie,Les, Joshua, Sam and Rebecca

Wednesday, October 15, 2003 8:10 AM CDT

Hello prayer warriors,
I wrote last night. Here is a quick update for this morning. Joshua is 121 lbs. as I write. Nurse Yo said, what we already knew, "water weight" She said the kidneys need to work a little more. Because of this they could give him only one bag of blood yesterday and will give him one today along with platelets. Two bags would raise his blood pressure more than it already is. The reason for this is there is more volume in the veins (blood) which makes the heart work more. Also the kidneys are not getting rid of the excess fluid like they would like them to thus the weight gain. Yo said the kidneys should start getting back to normal in 5-7 days. Pray that is true for Joshua.
Continue to pray all his organs keep functioning
THANK -YOU- THANK-YOU -THANK-YOU
THANK-YOU, LORD, FOR HEARING THE PRAYERS OF THE SAINTS
KEEPING JOY IN THE JOURNEY
LESLIE

Tuesday, October 14, 2003 8:08 PM CDT

DAY SEVEN

Dear Ones,
It was a somewhat quiet day. Joshua received Benadryl three times today, two times for tummy pains and one time
when they were giving him blood, so he would not have an allergic reaction. The Benadryl puts him to sleep and that is what he did most of the day.
I read his Bible to him today since he was so tired.
Psalm 103. Who heals all my diseases.....
Dr. Frangoul is watching Joshua's tummy closely and has put more of the regular medicines in I.V. form. Just in case the stomach starts to rebel and not want anything in it.
The liver is the same. The mouth sores are worsening so he is writing things to me and even learned' mom' in sign langauge.
The toes and hands still hurt from radiation so I creme them two times a day.
Late morning when Joshua was awake we put in a cd of Carman's (Christian singer) he was bongoing the the upside down spit buckets to the tune while nurse Yo and I were dancing to the music. It was fun and lively, when she left us she said," Now that was fun!"
Have a restful night,
God's love and our's,
Joy in the journey,
LesLie. Les. Joshua. Sam,and Rebecca

Monday, October 13, 2003 6:58 PM CDT

DAY SIX

Dear family and friends,
Today the doctor said we are one third of the way through of the first 18 days and Joshua is doing very well.
The only thing he is concerned about is his billirubin,which is high. It is what puts the yellow in his eyes. They are putting him on Actigal in hopes of lower the billirubin counts. Joshua is now feeling the aftermath of the radiation. One of his ears has three blisters on it
and both of them are quite red. The side of his face which had the feeding tube on it is also a little raw.The feeding tube 'hose" is now on the other side. His hands and feet feel like they are burning. When he showers, which he must do everyday, to keep the bacteria at bay, his arms, legs hands and feet burn with the water touching them. I would equate this with a bad sunburn. They did give him special cream to relieve the burning. One small nose bleed is all we had today. The mouth sores lessen his desire to talk. These things are painful but they won't last. I am thrilled he is doing well and is alive. Do I hear an Amen to that? He is also keeping his feeds down we will go up to 30 tonight, that is as high as the doctor wants us to go.
Being on T.P.N. (interveneous feeding) and fluid Joshua has gained and is now up to 120. We were so excited, all Dr. Frangoul said was "water weight" . We all laughed as he was not as impressed as we were. Later I asked the nurse why.
Nurse Linda said, "If they dropped the T.P.N. he would lose five pounds like that."Everyday he gets blood, platelets or
both he even gets magneasium (spelling) daily, his body seems to eat that up.
Today we did a little homework and now he is riding the bike while playing Gameboy.
We are going to watch The Unsinkable Molly Brown, loaned to us by our wonderful nurse Adele.
We thank you all for your prayers for they have strengthened us through this time.
Bible verses for the day, "My brothers, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have it's perfect work, that you may be perfect and complete lacking in nothing." James 1:2-4
I am learning sign langauge and I taught the verse to myself today. Fun..
Joy in the journey,
Love, LesLie , Les, Joshua and Sam

Sunday, October 12, 2003 6:38 PM CDT

Dear Ones, DAY 5
It is Sunday and Les' birthday. Though a strange one for him not to have the whole family together for it. Not even a cake! Though we, Les, Sam and I went to the Pancake Pantry a restaurant about three blocks from the hospital. The waitress gave Les a sweet potato pancake for a 'cake' Yum! complete with candle.
Les and I switched out for a couple of hours so I could wash clothes at the Ronald Mac. House. Sam and I played a couple of games of ping pong while waiting for the clothes.
Joshua is up in weight. 117 3/4 lbs. That is in pjs.
He is up to 27ml a hour with his feeding. The doctors are pleased he is still taking it well. He is getting the bulk of his calories from the T.P.N. (interveneous feeding).
In case some of you were very concerned, Joshua is doing well with the VRE virus. Some do get sick with it but Joshua has shown no ill effects, Praise the Lord. So we wait it out. it could be gone in three weeks or three years.
Right now he has 100 white cells, remember the normal body has 5,000 - 10,000.
The canker sores are the worst thing right now. Under his tongue and in his throat. He ate one gummi and practically went through the roof with pain. He also took his temperature and opened up a canker, more pain. White cells will get rid of this problem. We pray white cells come quickly in Joshua's body and get rid of these sores
in the name of Jesus our Healer. Amen
My parents are coming to help out with Sam so he can
get a semblence of home life again. I want to thank Scott and Vickie Pugh for taking care of Sam while we could not.
We do not know what we would do without them.
Have a Joyful night,
leaning on Him for joy in the journey,
Love, LesLie, Les, Joshua, Sam and Becca

Friday, October 10, 2003 8:59 PM CDT

Dear Ones, DAY THREE

We have had a pretty quiet day. the leg pain has died down. One nose bleed about 15 minutes, which they gave him platelets. Remember, platelets are the blood clotters.
Vancomycin Resistant Enterococcus - bacteria related to strepococcus is normally found in the bowels.People with a weak immune system, like
Joshua,who have had many antibotics or are critically ill are more likely to get VRE. Joshua has this. So when we go out we have to don gloves and gown.Hopefully we will not pass it around for this is a contact disease not an airbourn one.
Les took me out to eat at the Ronald MacDonald house. Just kidding you guys at Saturn, we went to Chili's.
Joshua is getting small doses of chemo every other day to keep the graft verses host disease at bay till his white cells come up and he can fight it on his own. Because of this and two days of chemo before the transplant Joshua is losing his hair, once again.... This time it looks like an older gentleman, nothing on top but heavier on the sides and back. We have to laugh.. it is rather funny looking.
Every one is still pleased with Joshua and how he is looking. I believe God's desire is the same as ours, complete healing for his child, Joshua.
I may not be able to write for up to 72 hours for they are fixing something on caringbridge. Bear with us
If something really must get out we will fine a way.
Joy on the Journey,
LesLie, Les, Joshua,Sam
and Becca

Thursday, October 9, 2003 8:39 PM CDT

DAY TWO
Hello everybody,
This is Joshua, and I get to journal tonight on my second day after transplant. Today was different from most of my days. I awoke this morning around 5:30am with a nose bleed. Throughout the day I spent about 5 hours trying to stop it. It has stopped and I pray it will not happen again. Besides having the nose bleed I noticed that my mouth was hurting and to my disbelief it was a mouth sore. I have been doing lots of mouth care and hoped to escape the pain of a mouth sore, but it came anyway. I am also trying my best to keep up with as much exercise and school as I can.
Nurses are everything because they can affect how you feel by how their attitude is. For those of you who do not know my nurses, they were dancing this morning to DC-Talk playing on the cd player. They can make me laugh even when I don't feel like laughing.
I want to thank each and everyone of you for your prayers. I know God is listening because when I feel weak, he always gives me this inner strength to continue on with life. While you are praying for me keep my family in your prayers also. I never realized it, but I'm beginning to understand how hard it is for my mom or dad to be here watching me hurt, without being able to do anything to help me. It is good to have them here to pray for me.
Even if I'm hurting physically, I'm still doing well spiritually because God is helping me. I hope God bless's you today. - love Joshua

Wednesday, October 8, 2003 11:43 PM CDT

DAY ONE
Hello everyone,
The guys are here all alone tonight. We were finally able to give my lovely wife a much needed break from the hospital. She is spending a night alone with Sam. I'm so happy for both of them. ( for those of you who don't know, Sam is our 11 yr old son. Just thought I'd clear that up.)
Day one brought us a mixture of things. Joshua was able to enjoy the day pretty well. He even went for about 1.5 hrs of no pain of any kind. When the pain did come back, it wasn't nearly what it had been. Dr. Frangoul stated that he had never seen anyone look as good as Joshua did on day one.
After a bone marrow transplant, they always count up for an entire year. They start from 1 and go all the way to 365. To remind everyone where we are, we'll start each journal with what day we are on. The person is usually not allowed to go into public until that first year is over. It does vary slightly from patient to patient.
Joshua told me that he would do the journal himself tonight. That was before we received about five phone calls. By the time we were done talking to everyone, he was not coming out of the bed. Very tired boy.
Joshua has to be up each morning by 8:00am. (Dr. Frangouls orders.) He wants him on a daily schedule. It's important for Joshua to sleep at night and be awake during the day. This may sound like a no-brainer to all of you, but when your in a small room with one little window, which gives no natural sunlight, it's sometimes difficult to know what time of day it is. Having the clocks help but they don't always make it easy.
As long as Joshua is feeling good enough, he is going to have a list of daily accomplishments he must complete. It includes things such as mouth care, exercise, homework, showers, bible devotions....... I know this may sound crazy but it's important for body, soul and spirit. It actually helps him take his mind off of pain when it's not to an extreme.
As Joshua's dad, I can't tell you what a blessing it is to receive so many prayers. In 1982 I knew in my heart that I was going to have a Rebecca and Joshua. I wasn't married and didn't even know Leslie until a year later. When Leslie became pregnant the second time, I knew it had to be my son on his way. (we of course already had Rebecca.) I prayed for nine months under the stars at night for God to give me my Joshua. It wasn't until 1987 that I had the excitement of crying for joy when Leslie gave birth to our first born son. I also had a belief in my heart that he was going to be special. That God was going to use him in a mighty way.
God's mighty way is upon us. I believe your love and intercession for Joshua, is going to allow him to fulfill his purposes in God. Please continue to stand with us through what could be a very long year. This is a Kingdom thing and Leslie and I are in awe. Thank you so much, each and everyone of you.
Living with Joy In The Journey,
We love you all,
Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua.

Wednesday, October 8, 2003 0:21 AM CDT

IT IS COMPLETE!!
On the Jewish calender this is the Day of Completeness
and tomorrow is the Day of New Beginnings. Just think
Joshua was completed today with new bone marrow and tomorrow is day one of his bone marrow, a new beginning for him. I think that is very exciting.
Before they hung the marrow we prayed over it asking the Lord to bless the marrow. They hung the marrow at 9:00 P.M. and at 9:23 P.M. the marrow entered his body. It went in easily enough. We also prayed over his body as the marrow entered into him. The hard part was Joshua's legs. The pain was unbearable and unrelenting. Through the whole marrow we were massaging his legs having him ride the bike or sit in a chair. Nothing worked and it was stressful for all of us.
The nurse gave us a break and massaged his legs. She gave him some Adavan (a relaxer) and a heating pad for his legs.
Well, God was in that remedy, and by midnight he was a happy camper and was even enjoying 'I Love Lucy'.
It is 12:45 a.m. and I for one am ready for dreamland.
God had seen us through this time. We are eternally greatful for your prayers and support through the e-mails.
The nurses explained to us that it takes approximately 10 to 14 days for the marrow to find it's way from the blood stream to Joshua's bones. If he is going to have complications of any kind, it is believed to not happen until that time. We agree with the belief that Joshua is only going to get what is needed. Nothing more, nothing less. We claim that in Jesus name. We need some peaceful days.
Please continue to pray against any complications. That Joshua could get some much needed rest. That the leg pain would be gone.
THANK-YOU THANK-YOU THANK-YOU for all your prayers and encouragement to us. We could never express how much it has meant to our family.
God's Blessings to you all
Joy in the journey
LesLie, Les, Joshua, Samuel and Rebecca

Tuesday, October 7, 2003 3:10 PM CDT

HI Everyone,
Everything is going as scheduled. Dr. Frangoul said
Vanderbilt should receive the bone marrow at 4:30 p.m.
We now know this wonderful woman is in the U.S.A. When they get the blood they will spin out the platelets and red cells then Joshua will receive it about 6:00-6:30 tonight.
I am running on excitment. I am so thankful God had a perfect match for Joshua.
We thank you all who took time to visit Joshua today.
Franklin Classical School (Joshua's school) had en-
couraged their students to come by and pray for Joshua.
Such a bold statement as I watch them praying outside Joshua's door.
Bless their boldness Lord. I want to thank the students who brought flowers.
Our church youth group is hosting a prayer service for Joshua today.
Rebecca's school fasts each Tuesday and this week they are holding Joshua up as they fast and pray.
I want to thank all of you who are taking time out of your schedules to pray for our Joshua.
May God bless you all,
Having joy in the journey,

Love, LesLie, Les Joshua, Sam, and Rebecca

Monday, October 6, 2003 7:56 PM CDT

Dear Ones,
This is the second journal of today. I want you all to know Joshua is doing MUCH better. Thank- you for praying for him. We are listening to our history lectures by Dr. Grant. Just want all of you FCS people to know we have one left and we will be able to start this year's lectures.
We are asking for you all to lift the doner up in prayer. She has surgery tomorrow and could be in discomfort for a couple of days. This procedure which used to be done with many needles is now done with two or three long.... needles, while she is asleep. It is then sent off with a courier on a plane and brought to Vanderbilt. Since her blood type does not match Joshua's they will spin out the red cells and the platelets. Then they take the bag of marrow and hook it up to Joshua's catheter. It will take about three hours to all get in his body. No one knows the exact time. It could be 5:00 P.M. or midnight. This week should be fine for Joshua the doctors say. Next week is when he may start some problems.(more nausea,vomiting and the like.)
We are humbled by the outpouring of prayers and fasting done for Joshua. Our church group is holding a special prayer service for Joshua on Tuesday. Thank-you all for holding up Joshua in prayer.
Lord, we pray blessings on this dear woman who would so unselfishly give of herself, to Joshua, someone she doesn't even know. We pray she rebounds quickly.
In your precious name we pray Amen.
Have a great night.
Leslie, Les, Rebecca, Joshua and Sam

Monday, October 6, 2003 8:34 AM CDT

Good Morning,
I wrote a journal last night. A little while after the journal writing, Joshua was feeling somewhat better. We had a good night after the nausea lessened and the eratic moving stopped.
This morning didn't start out so well, and I am writng to give his prayer requests.
His legs are in alot of pain,for they lowered the dose of medicine for that issue and he feels it. (to get ready for the transplant) Joshua also is having
nausea, stomach pain and some heartburn.These thing are not common our nurse said. it is frustrating for us because he cannot have the regular medicine, yet we understand why.
He is not tolerating the feeds (common) so we are back to 10 ml an hour. a eight ounce can is 250ml so you can see it is going Very slowly.

Thank-you for your faithfulness.
Learning to have joy in the journey.
Love,
LsLie,Les, Joshua, Sam and Rebecca

Sunday, October 5, 2003 10:24 PM CDT

Good Evening,
Joy in the journey is what I want my heart to have. Sisse said that and my heart grabbed that phrase. I also want God to say,"well done, good and faithful servant. whatever it takes I want to do it for God.
Last night after I had written in the journal Joshua was nauseous. They give Bendryl for that. His body started to jerk and shake. In the middle of this he threw up and his feeding tube came out for the third time in less that 24 hours. They can not give narcotics prior to a transplant, which is what Joshua wanted to lessen the pain. Joshua was miserable and crying for about two hours. Our prayers seemed to be bouncing off the heavenlies. It was a hard night.
Today was fine. Les visited and Sam had to stand outside the door. Sam did talk to Joshua using the nurse phone right outside his room. Sam then spent his time having a little fun and took a spin in a wheelchair. (he loves that)
Rebecca called, so we had the family together, sort of.
Tonight the Benadryl was halved yet we still had the same reaction but to a lesser degree. After Joshua praying, the best thing we can do is watch t.v to keep his mind off the pain in his legs and the nausea.
Tomorrow is our day of rest, no chemo. Even if his platelets are low, they do not give blood for they do not want it to mix with the transplant blood.
For all of you who do not know, the bone marrow transplant is not surgery. It is rather anti-climatic, it is done exactly as a blood transfusion. It comes in a bag and they hook it up to his chest catheter and away we go.
As I know more I will share it with you all.
Thank - you for your continue prayer support.
learning joy in the journey,
Leslie, Les Joshua Sam and Rebecca

Saturday, October 4, 2003 8:40 PM CDT

Dear Everybody,
We had a splendid day on Friday. Joshua woke up before the alarm, 6:05 a.m. and got dressed and made his own breakfast, oatmeal. Your prayers for Joshua to do well during the radiation have wildly exceeded our expections.
The nurses can't believe how well he is doing.
Before the last radiation treatment Joshua, had a doctor appt. Dr. Frangoul the bone marrow doctor, is very pleased with Joshua.
When Joshua was done with the doctor and last radiation, Les, Sam, Joshua and I went to the park for one last breath of fresh air for Joshua,( until he gets back out of the hospital.)We had a wonderful time playing, walking, talking, we even raced up a hill. (little hill) We all completed the race. Les won first (we were all so proud of him)lol :) Then Sam, Mom and my favorite 16 year old, Joshua.We went to Dairy Queen for some ice cream and then ordered pizza from Mellow Mushroom, special last night time before Joshua goes in the hospital. A good night all away around.
In the morning we had our usual group hug and prayer, then off to the hospital(Les and Joshua).Sam and I came about 11:a.m. Les and Sam left around noon so they could make Sam's football game on time. Joshua and I spent the first day of the hospital together.
Today and Sunday Joshua will receive chemo for two hours. This is done to make sure ALL the white cells are gone.
This is a dangerous time and an infection could kill him. For he would not have any white cells to fight off infection.
Today he had some big time dizziness and threw up the feeding tube. He had some cramping which went away with prayer. Right now he is in bed resting comfortablly.
Will write again on Sunday,
Thank-you for your many prayers
In His Love,
LesLie,Les, Joshua, Sam and Rebecca

Thursday, October 2, 2003 6:33 PM CDT

Hi Everybody,
It has been a quiet day. We had the two radiation treatments today. This morning Joshua felt quite nausated and tired after the first treatment and pretty much napped this morning till 1:30 p.m. We went off for the next treatment and came 'home' about three and he has been fine. He is still eating with the tube and normally as we do. Praise the Lord. God is answering our prayers on Joshua to keep eating.
Joshua goes in the hospital, Saturday, 7:30 a.m. He then starts two days of chemo. Monday is his day of rest and Tuesday is the transplant.
Les and Sam are coming here about 9:00 p.m. to sleep over and just to be together before the hospital stay.
The doctor doesen't want Sam in Joshua's room once Joshua is admitted until Joshua's counts come back up. So, they won't be together the month of October. Keep them in your prayers for this issue also.
I take short walks down the tree lined streets of Nashville and I enjoy looking at the older homes.
We have a Red River Birch tree right outside our window here. It is lovely to see it sway in the breeze as the cheerful sun glints through the branches. I love looking at it, it is so peaceful to see.
Have a great night,
May the Lord bless you and keep you all,
Love, LesLie, Les, Joshua, Sam and Rebecca

P.S. Check out the new pictures. Thanks again, Will.

Wednesday, October 1, 2003 10:04 AM CDT

Dear Ones,
Yesterday, I met Les and the boys at the Ronald MacDonald house in Nashville. It is about five minutes from the hospital with traffic. This week Joshua has total body radiation twice a day. The radiation needs to be about the same time in the morning and afternoon each day in order for the radition to do it's job. Last night, Joshua had some terrible jaw pain and a slight fever which is gone now.
The jaw pain is normal and some hydrocodone 1000m.g. took care of that. Joshua is still eating and just has a little nausea. We have been praying that the radiation is only doing what it is suppose to do no more and no less.
The Ronald Mac. house is lovely and spacious. They work to meet one's every need from washing and drying machines with detergent to food to .25cent sodas. We have a suite which means we have a kitchen and a living room. We also get to dine in our room. Most of the others have to dine in the common area. We have a suite because Joshua is not to be exposed to other people and their germs.
I went to Texas this weekend with Sue Golab. We had a wonderful time, she really knows how to use a map. Rebecca and I spent Saturday alone and had a great mother-daughter time. We went to the Goodwill and ice cream place, bookstore and even the movies. She is a teriffic daughter
and a wonderful blessing to me.
I will try to write everyday and if not that every other day.
Pray Joshua keeps tube feeding
No nausea
No infections
That the radiation does only what it should do nothing more nothing less.
God's blessings to you all
LesLie, Les, Joshua,Sam and Rebecca

Saturday, September 27, 2003 11:06 PM CDT

Hello everyone,
Well, we’ve made it through five days of head radiation. Joshua is doing great! Yesterday and today he had some cramping, but neither lasted very long. I could make a long list of positives. We praise God for no headaches. Joshua has been able to eat fairly consistently this entire week. He’s felt well enough to get some exercise every day. Joshua and I (Les) have gone driving the last few days. Today we even went on highway 65. He is doing great. I’m so glad he is able to have something he can enjoy so much before he goes back into the hospital.
We’re having a boy’s weekend with Leslie being in Texas visiting our precious Rebecca. We called them tonight and it sounded like they are really enjoying their visit. A friend from church, Sue Golab went with Leslie. She is already familiar with the campus because she has a daughter that went to the Honor Academy about five years ago.
The boys and I will check in to the Ronald McDonald house on Monday evening. He will get his last head radiation on Monday. The two a day full body radiation starts on Tuesday and will go through Friday. He will get chemo treatments on Saturday and Sunday. Monday the 6th will be his one day of rest. On Tuesday the 7th he gets the bone marrow transplant.
Thank you for your faithful prayers. We know it’s making a difference. Please remember to pray for our most giving donor. The only information we are allowed to have is that she is a 43yr old women. Please pray for her continued health. May God Bless her.
We love you all, and may God Bless you.
Les, Leslie, Rebecca, Sam and our Champion Warrior
Joshua

Tuesday, September 23, 2003 8:50 PM CDT

Dear Ones,
We have had two days of brain radiation, Joshua has had some nausea and has been a little sleepy. He also has slowed down on his eating, less than one meal a day. We are keeping the tube feeding running as much as we can, about 20 hours a day. Other than these things, he is doing well. On the first day when we got in the radiation room and they were getting Joshua ready, I was hit with the reality of this whole situation and it unnerved me a little and I almost started to cry. I put my mind on God and was able to rest in Him.
It is only for ten minutes each day. we are home at 11:00 a.m. (when we do not have a appointment with Dr. Frangoul) We are able to feel like we are home all day which is very nice for us. His breathing is much better and our doctor is very happy with that, aren’t we all?
Joshua is having the best time driving, he just loves it. I am so happy for him that he can do this before he goes in the hospital.
Today I roller bladed and Joshua rode his bike. (he hasn’t done that since April and it was too much for him then) He gave me a head start and still beat me. It was exciting to see him on the bike. It is a thrill to me to see him with that kind of energy. Yet, had Joshua never got cancer, I would have taken his bike riding for granted. I believe we shouldn’t ever take these simple things for granted. When you watch your family do everyday things, be excited and thank the Lord for their health.
Please pray no brain damage to Joshua. The doctor said there is a five percent chance for this. This can show up in 6 months to two years from now. It shows up in a lower I.Q., up to 10 points. Also, the short term memory can be affected. It can even cause personality changes.
There are small chances of second cancers developing among other physical reactions.
I am glad we serve a big God, Because nothing is too big for Him.
I am growing in the Lord, so that is a good thing about this whole situation.
Blessing on you all,
LesLie, Les, Rebecca, Joshua, Sam

p.s. sorry for slow incoming new pictures. we have not seen our picture man in a while due to our running schedule.

Saturday, September 20, 2003 7:39 PM CDT

Hello Prayer Warriors,
Joshua had the ‘surgery’ Friday and came through with flying colors. The surgery was called a rigid bronchoscopy dilation, not an angioplasty as I had previously said. I guess I was letting you all know they were using a balloon in this procedure. They put a stiff(rigid) tube down Joshua’s largest bronchial tube, then put the balloon down. The sides of the balloon inflated, then they slowly opened the tube till the whole balloon was inflated. There was a little bleeding so they kept Joshua overnight to make sure no bleeding in the lung occurred.In the morning they took an x-ray, saw no blood and home he came. My brother Todd stayed overnight with him, so they got to enjoy some good time with each other. Todd was able to meet some of Joshua’s nurses and doctors. Todd got a feel for the hospital and all that goes on.
Dr. Frangoul is thrilled with how Joshua is looking. He even high fived nurse Linda over it. Which Linda said he normally does not do. He told me Joshua got the million dollar work-up. Which means they checked everything that could be checked and all systems go.
Dr. Frangoul told me he is very pleased with our attitude towards all of this. Again he reminded me attitude is half of this. I pray our attitude is pleasing to God. I also pray people can see we are trusting in God’s report and His help.
It is another lovely day in Tennessee. Joshua took me driving and does quite well. Maybe it was all the practice on the riding lawn mower.
On an ending note, at the hospital, nurse Linda asked Joshua his pain level and he said, zero. Thank-you God .
Monday, at 9:00 am we start the brain radiation. This is Monday - Friday and then next Monday. He will be taking anti nausea medicine. Other than that he should have no other side effects. Please be praying with us against nausea. Tuesday, he will see Dr. Frangoul and have another lung test, which he should pass with flying colors.
We will write on Tuesday and let you know all the details of what is going on. Enjoy your Sunday. Don’t ever take church service for granted. This is the first time in our family history that we cannot go to church as a family. This is one of the most disappointing things for all of us. Joshua actually cried one night because of not being able to go to church anymore. I think it’s great to have a 16 yr old miss church that badly.

God’s blessings on you all,
Love, LesLie , Les, Rebecca. Joshua, Samuel

Thursday, September 18, 2003 8:35 PM CDT

Dear Ones,
Sorry for taking so long in writing. Joshua is doing wonderfully, no nausea, no pain pills. God is truly doing a work in him. One of our nurses said his cheeks have filled out nicely. The radiation doctor said he looks so much better than the last time he saw Joshua. Dr. Frangoul, our bone marrow doctor said Joshua is doing great. He also said, when we come in the hospital we need to have a great attitude, saying we are going to go in the hospital get this done and sail through and out we go. I receive that message.
Last week we were told if all is good we should have a week off from the doctors. That was a great thought, no such blessing though. Doctor visits Monday, Tuesday, Thursday and Friday. We had bone density testing done. We also had radiation visits getting ready for the brain radiation treatments. I saw his actual brain and whole face without the skin. Very strange to see Joshua in this way. Joshua’s blood counts are normal, happy news. Friday, Joshua is going in for an angioplasty for his largest bronchial tube on the lungs left side. Praise the Lord, both of Joshua’s lungs are fine. He was scoped on Monday, that is when they found out his major bronchial tube on the left side is cylinder shaped instead of circular shaped, thus air cannot get in or out, so the left lung is not being used. The surgeon wants Joshua to stay overnight for observation. We are disappointed at the thought of the overnighter for my brother Todd. He is here from Wisconsin visiting for just a few days We want him to be able to see Joshua as much as possible.
Dr. Frangoul is feeling better about Joshua’s transplant knowing his lungs are in great shape. Joshua didn’t fail the breathing test for lack of good lungs but for a poorly shaped bronch tube.
Every day is a gift from God and this was a great one.
Pray the surgery goes well about 10:00 - 11:30 a.m.
Pray he continues to gain weight, 117lb. I would love to see him at 120 lbs.
Pray his organs continue to be strong and keep on working.
In faith Lord we thank you in advance for Joshua’s total healing from leukemia. You get all the glory Lord, for you do great and wondrous things.
Thank-you all for your constant prayer support,
In His love,
LesLie, Les, Rebecca Joshua and Sam

P.S. Joshua got his driving permit Wednesday. How happy I am for him. He is so excited. We have taken him out three times already. Thank-you God for everytime you put a smile on our boy's face.

Sunday, September 14, 2003 8:20 PM CDT

Dear Ones,
We had a GREAT weekend. Rebecca came home. She wanted to see Joshua before he went in the hospital. We all went to Sam’s football game.
Joshua was made honorary captain and went up for the coin toss. The game was dedicated in honor of Joshua, yes, they won the game 29-6. We went to Dairy Queen for a treat and Joshua ate a big cone (good calories). We walked a mile and had a candlelight family dinner. Mike and Sisse Pfieffer came over and we had some good laughs - so..good for my spirit.
It was wonderful to have Rebecca home. It gave a great feeling of normalcy. After she left with Les and Sam, to meet her ride in Huntsville. I felt so good..I had lots of energy to get our house in order. Thank- you Lord for a Red Letter Weekend. You always provide for us Lord .
On Friday we were officially told that Joshua is cancer free. That's great news of course. It means we can proceed with the laid out plans. Some of you may wonder why we would still risk a bone marrow transplant if he has no cancer. The answer is that everyone at Vanderbilt is pretty much convinced the leukemia would come back and come back much more aggressive. We were told it's possible that if needed, chemo treatments may not even help him next time. We really didn't see where we had a choice. May God be with our every decision. Monday morning, Les is taking Joshua to get his lungs scoped. They believe the lungs themselves are o.k. (the fungus spots are getting smaller) They do however feel his airway is partially blocked. He failed the lung test again. Last week his score was 48, this week 57. The doctor said we’re headed in the right direction, we’re just not there yet. He needs at least a 60 to past the test. Personally I would like a 70 or 80. He is walking and using the bicycle among other things.
Joshua is doing well on all accounts. God is fine tuning his body to get ready for the bone marrow. Stand back and watch the glory of the Lord. See how he will carry Joshua through this time.
Join us in praising God in what he's going to do in this situation.
We love you all.
LesLie, Les , Rebecca, Joshua and Sam

Thursday, September 11, 2003 10:12 PM CDT

Dear Ones,

Joshua is doing quite well lately. He continues to eat and use the feeding
tube. Basketball and walking is going good also.
Mr. Mike’s son, Shay, just brought over Mrs. Sisse’s stationary bike for
Joshua, more exercise for Joshua. I am going to do it too.
Joshua’s visit to the oncology radiologist went well. They measured him in something the size of a phone booth without walls with a bicycle seat to sit on in the center of this thing and handle bars to hold on to . Joshua will have four days of spine and brain radiation twenty minutes a day. In case you are wondering, less than 2% chance of brain damage. If a child is under two there could be a problem since the brain is still growing. Joshua will go home after these treatments. The week of the 29th we will stay at the Ronald MacDonald house. This week he will have two treatments of full body radiation twice a day for four days. It is imperative for Joshua to be free from any sickness coming into the radiation, thus the reason for being quarantined from large groups of sick people and children. Once the radiation for the body starts by the second day of treatments, they must keep going. If he was sick,he'd have no way of fighting it because there would be NO bone marrow, which means there would be no white or red cells which would be certain death. They must clean out Joshua to get ready for the donor's bone marrow .
The date scheduled for the transplant is October 7th. The donor donates the morning of the 7th. Then a courier will take the marrow on an airplane. If the marrow is brought at 10:00 p.m. the marrow is from Europe, if it is afternoon it is from America.
We found out the donor is a 43 year old female. Les said,” I half expected it.” ( No kidding, Les, It is either a man or a woman) He didn’t even get his own joke, funny.
We are enjoying our time together. God is in control, no matter what happens. Blessing to you all.
LesLie, Les, Joshua, Sam and Rebecca
p.s. For those of you who are familiar with baby Zoe, ( shesmiles.com ) we need to let you know that she has gone to be with her Jesus. We have mixed feelings. We are so happy that she will never feel any pain again, yet our hearts ache for Judy and Chris. We know what we felt when we came close to losing Joshua.
Sam and I are going with Mr. Mike to Huntsville Friday night to the funeral home to let them know how much we care. Please join us in praying for the entire family. May the Lord bless them and keep them, especially this weekend. May He fill them with His strength.

Monday, September 8, 2003 9:35 PM CDT

Dear Ones,
I just heard Joshua shout during the football game (Mon. night) Nothing is taken for granted anymore. I learned a while ago everyday is a gift from God.
One understands that more when they are going through difficult situations. None of us know what tomorrow will bring. Being in this situation everyday is different.I can’t plan for tomorrow for I do not know what tomorrow will bring. I know our God is there to face it with us for He promised to never leave us or forsake us, Our God is a Good God.
Saturday, Sunday and Monday, Joshua has done at least 1/2 hour of exercise. Walking around the perimeter of our acre lot, basketball,we played pig instead of horse,yes,Joshua won. we washed our van with his friends and had light saber fights with brother and friends at night. Monday we went to a kids park to play and tonight I was outside and he Ran to me with the phone. What a beautiful sight, to see him running.
Joshua has been eating three times a day, very small meals but eating them and keeping the food down. Joshua is holding down the feeds in the tube and may I tell you at the rate of 81 ml per hr. This would add up to 3000 calories for a day. Much better than the 15 ml we were doing last week. He has had very little nausea, some today, so we gave him some medicine and it helped. God is Good.
More good news. Joshua’s platelets and red blood count is up so he doesn’t need any transfusions. Our transplant doctor is real happy with that news. He is also happy Joshua is getting outside with exercise. He is going to delay the transplant a week to give Joshua a chance to recoup from the last round of chemo, doesn’t want to wait longer for fear leukemia will return.
Joshua had two friends over today which he enjoyed. He just came up to me and said, “I had a good day, Mom. “
God has heard our many cries for Joshua through prayer and fasting and is honoring them. Have a good night and enjoy your love ones. We are taking Joshua for a bone marrow test on Tuesday morning. Please pray that no cancer is found. He needs to be cancer free to do the transplant.
My bible verses are Isaiah 26: 3-4 "You will keep him in perfect peace, whose mind is stayed on You because he trusts in You. Trust in the Lord forever, for in Yah, the Lord is everlasting strength."
We love you all,
Leslie, Les. Rebecca, Joshua and Sam

Saturday, September 6, 2003 1:59 AM CDT

Dear kingdom partners,
In many ways, this journal is difficult to write. I’m very happy to report that Joshua is feeling much better than he had been. Since our last journal, Joshua went to clinic at Vanderbilt and received blood, platelets and fluids through his I.V. He’s been staying up most days without needing all those naps he’s been taking. His strength is slowly coming back and he’s even able to eat and drink a little. (we’ll take whatever we can get.) Thank you for all of your prayers and THANK YOU JESUS !!!
Joshua started the bone marrow tests today. They checked his heart for flow pressure, did x-rays of his lungs, checked his breathing along with taking lots of blood cultures for many different tests. We didn’t realize what all they had to do. It was very eye opening for all of us. Actually too many things to list. They must have a clear understanding of his entire body, before they can proceed with any plans they have. Much of the tests are dictated by law.
We unfortunately heard some things that caught us way off guard. We concluded our 7 hour day with a very factual and much anticipated conference with the chief bone marrow specialist. I had thought he was avoiding us for a long time. Now I know he was professionally waiting for the proper time to tell us everything. With his experience he has learned that a family can only handle so much information at a time. I’m glad he waited to tell us what he shared today.
According to pure statistics, a person with Joshua’s situation only has a 30hance of survival. That’s with the perfect 10 for 10 match. He said 7 of 10 don’t make it more than 3yrs. Of the 7 that don’t make it, 2 die during the transplant. The other 5 either die from organ failure (which is why they check all organs before they start anything,) or within the first 3 yrs after, they simply have a relapse. Once any of these events occur, the doctor said there is nothing he can do to save the patient. He went so far as to tell us that with Joshua, the chances of survival are even worse. He then explained that the statistics he shared with us, was for people coming in with no previous complications. He stated that with what Joshua has already battled, the crohn's disease and aspergillus, (in the intestinal area and lungs,) he is very concerned for him. Joshua has already failed today’s lung test. His lungs are not very strong. He's had fungal pneumonia, major lung surgery and has been forced to be off of his feet for too long. We will be working very hard to build up those lungs this weekend. They are going to check him out again on Tues Sept. 9th. The state of Tennessee will not let the hospital give him the transplant unless he passes all tests.
Let me tell you what we’re thinking right about now. First of all, we are shocked. We really didn’t understand how dangerous this bone marrow transplant is. We knew it could be bad, but these statistics floored us. I think we both walked out of that office numb. Then my spirit man kicked in just in time to remind me that God works best, when life has our backs up against the wall. I found myself reminded of how the Israelites were led BY GOD to a place where their backs were against the water with nowhere to run, while the entire Egyptian army came charging at them. YET GOD DELIVERED THEM !!! What a great and mighty God we serve. I’ve come to the understanding that the greater the odds, the more Glory God will receive. WE WILL NOT BE INTIMIDATED BY THIS INFORMATION.
We tell you all that we know, not so that we can be negative and focus on what might or could go wrong. We simply believe that it will be helpful for you to have the facts, to more clearly pray with us. I know that my God can find a way, when there seems to be no way. (a good song by Don Moen.)
Please pray that a spirit of fear would not find it’s way in this home.
That Joshua will continue to get stronger.
That when this is all over, every doctor and nurse involved will know that there is a God in heaven. The one true God. JESUS IS HIS NAME !
Thank you for checking up on Joshua. We thank you so much for your prayers.
We love you all.
Les, LesLie, Rebecca, Sam and our Champion Warrior Joshua.

Thursday, September 4, 2003 3:09 AM CDT

Dear Ones,
It is ten o’clock and my daughter just called to tell me she misses and loves me.
What a nice way to end this night.
The vacant home next door was just mowed or maybe bush-hogged, grass was up to eight feet tall in some areas. Anyway some mice came in our home while we were at the hospital. Well we got the mice but guess what I found in the pantry tonight, their droppings. It was tiring to clean up. I thought I would have all this energy for these
three weeks, I was wrong. Les and I are wiped out and Joshua is terribly exhausted.
When he was at Vanderbilt on Sunday they gave him lots of fluids, for he was big time dehydrated. That bounced him up for a while. By Monday night he was looking so pale with deep brown sunken circles around his eyes that Les and I were frightened. We found out the next day that is a sign of dehydration .We are so glad God is in control. Joshua was unable to hold any feeding tube ‘milk’ down on Monday, we had to give his stomach a rest. I started him back up on his feed 10 ml a hour, which is maybe a tablespoon.. When we hit 20 ml a hour I thought we were zooming. Then he would throw up and the little he had just received was in the bucket. We would have to wait a couple of hours to start the feeds and go back down to 15 ml. It breaks my heart to look at him so wane and thin. Since Sunday he hasn’t eaten. He just can’t hold anything down. This is Wednesday night. His day started out early to the dentist (7:30 appt.) two throw ups before we even got in the office. The dentist said no problems, Praise the Lord. We were home by 9:30.He went to sleep on the couch. I woke him at 11:30 a.m. for his pills, then back to sleep. We woke
him up at 3:30 p.m. and made him sit up. A home health nurse came to give him fluids. Up for 1 1/2 hours. He fell back asleep at 6:30 p.m. woke up for 1/2 hour before going back to sleep once more. I woke him up at 9:15 p.m. and said , “Joshua, lets go to bed .” He agreed. A very close friend of his called up and they talked for only ten minutes when Joshua explaned his need to go to sleep. We talked to our nurses and they want Joshua to come in for a blood transfusion, which we will do on Thursday. His red blood count is 25 and a normal person is 40-42. With his red blood being so low, I was told it can cause headaches which he has along with sleepiness and inability to concentrate. The reason for this is not enough oxygen being carried around, which is the job of the red cells. Pray with us he will perk up with the transfusion.
Joshua is not gaining weight (has lost some). This is a big problem with the bone marrow coming up. JOSHUA NEEDS TO EAT AND DRINK AND KEEP IT DOWN. By tonight we will have his feeds up to 70 ml a hour. We need to get up to 90ml a hour.
Les and I have decided to fast till the end of the month. For us it will be either a meal a day, sweets, or in between meal eating. We are praying the Lord would take the food we would have and put the ability and desire in Joshua to eat and keep it down. If you can join us in this fast, please do. I know it will be a blessing to you and to Joshua. If you are unable to fast PLEASE still pray with us .
May God get all the glory in Joshua’s complete healing,
Thank- you for your loving support
In His Love,
Les, LesLie, Joshua, Rebecca, and Sam

Monday, September 1, 2003 10:05 AM CDT

Hello Everyone,

For those who read yesterday's journal, know
Les and Joshua came home at 7:00 P.M. on Sunday.
Les and Joshua went right up to the 5th floor and talked to Joshua's doctor. That is a great blessing instead of having to go to the emergency room. No waiting no filling out of papers and everyone knows Joshua's situation.
A nurse changed out the feeding tube gave him Gatorade and had him stay in a hospital room to see if he would throw it up. If he didn't throw up by 6:00, he was allowed to leave. Joshua kept it down. Thank- you Lord.
Joshua went to bed when he got home till 9:00 P.M.
Then we roused him up for a math game. He had a cheese
stick couple pieces of popcorn and some Gatorade, so
thankful he kept it all down.
It is Monday and we will start the feeding tube soon
pray Joshua keeps down the milk.
Enjoy your Labor Day,
Thankful for your prayers,
In His love,
LesLie and family

Sunday, August 31, 2003 2:30 PM CDT

Dear Everyone,
Saturday, we pulled out of one of Vanderbilt's garages at 2:03p.m. We were able to leave at 2:00. As you can see we left as quickly as possible to enjoy HOME.
On Sunday, 12:30 p.m. Les called me as Sam and I were driving home from church. He said they were back at Vanderbilt. This is so frustrating. Joshua threw up at home and up came the n.g.tube (feeding tube) Three times he threw up. How is Joshua to gain weight when he can't keep the tube down?
Maybe they will try the stomach button. I do not know much about that but then at least we wouldn't have to continously run to Vandy every time he throws up.The fluids in his body were down so they gave him more I.V. fluids.
Time to be grateful or I might start to be uncontent where God has us.
I am thankful for Vanderbilt, a wonderful hospital .
I am thankful for caring nurses and doctors.
I am thankful you all care enough to check Joshua's webpage.
I am especially thankful for Joshua 13:1
I am thankful that Our God is in control and knows the number of the
very hairs on my head.
I am thankful for my caring families, both, personal and my church family at large.
Thank-you Lord for the many blessings you have bestowed on me. I will praise you ever more.
God is Good
In His Love,
LesLie and the Family

Friday, August 29, 2003 7:02 PM CDT

HI EVERYONE,
Sam and Mom are with Joshua today. Yesterday, Joshua slept by himself at the hospital for the first time ever. He was excited about it which was good. I was too wiped out physically (from doing hair for twenty people at the nursing home) and mentally exhausted. (I'm sure you can guess why,) to drive back to the hospital after Sam's football practice. I was glad I was able to stay home and Joshua felt well enough to be alone.
Joshua had the spinal tap today in the main surgery area. The reason for this was they were trying a smaller needle and taking less spinal fluid out in hopes these two changes would make Joshua less likely to get the spinal headache, if that is what they truly what they were. For The headaches Joshua had were in the front of the head not in the lower back likely 99 percent of the patients who do get them. Then again Joshua is not a by the book patient either. Well,back to the spinal tap story.He wasn't real happy and neither was I, because before the actually spinal tap the anesthesiologist gave Joshua some numbing medicine in shot form in the spine and he FELT IT. The hard part was, we were promised Joshua would not feel any pain, and then he did.I hate that when it happeneds, for it hurts me to see Joshua in pain. We found out the anesthesiologist doesn't look at that as part of the procedure. Most people would not feel what Joshua did. He being in so much pain these past nine months, has a much lower pain tolerance than you or I. The Onocology
Anestesiologists understand and wait till the patient is truly asleep. Our nurse is talking to the anesthesiologist
( who we had before for other procedures, nice older man)
about it so I guess he will learn something knew at Joshua's expense. He feels o.k. now and I am glad.
Joshua must lie flat for twenty-four hours. If no headache shows up, (we are already praising you God for no headache.) we will sail out of here. We already have our prescriptions and home health care has delivered the milk for the tube feeding along with the items to keep his chest tubes clean and free from bacteria.
On Thursday night I said to Sam, " look three of us are home tonight." He said, " and tomorrow all four of us will be home". (Rebecca in spirit.) She will spend Labor Day with her Texas Grandparents and the rest of Les' side of the family.
On a fun note, Rebecca ran 2.2 miles the other day. Anyone who knows Rebecca, knows her running before she left for Texas consisted of running to get the phone first or running to her room when her sweet brothers who loved to hear her scream would chase her, just to hear that lovely sound. Fun times...
Thank - God we are coming home tomorrow. We don't have to return to a hospital room till September 21.
Pray nothing happens that will make that date earlier.
We will write in a couple days.
God bless you all,
The Nienow Family

Wednesday, August 27, 2003 11:53 PM CDT

Hello everyone,
We have some great news to share tonight. The person who matches Joshua's bone marrow has been found, and is very willing to continue the process. PRAISE THE LORD !!!
Up until now, they were only dealing with lab work. They needed to locate the donor and find out if they were still willing and able to help Joshua. This person is now going through a complete physical to see if they are healthy enough to still donate. Please join us and ask for God's blessings to be upon this individual. May God keep her or him in perfect health. I realize our donor may live anywhere in the world, and we can't know their identity for at least one year. I hope however after the year is up, we are allowed to meet to give the biggest hug I can imagine.
I have a couple of days off of work. This allows my wonderful wife to go home and get refreshed before our homecoming on Saturday. With me being back at work full time again, she's at the hospital 80% of the time. I'm so blessed to have LesLie. I want the whole world to know how much I love her. I know she hung the moon in my kids eyes. Lord, Bless My Wife.
Joshua continues to recover from this last round of chemo. (and I do mean LAST round, Bless God.) White cell counts have jumped to 2.6 or 2,600. The headaches are for the most part still gone. He's eating more every day. I don't mind telling you that we are pretty pleased with life right now. YOUR PRAYERS ARE WORKING!!!
Please keep them coming.
I love you all, Les

Tuesday, August 26, 2003 9:45 PM CDT

Dear Ones,
The last two days have been very good. The headaches
have subsided. Joshua is getting the caffine only one time a
day. Joshua's counts are 1.6 or 1600 very good, not normal which is 4000 - 10,000 but we are getting there. Joshua
was able to go out in the hallway today. He peered out of the window and said, "I wonder how it feels to be outside." Think about it, for yourself, being in a room for one month and only leaving 3 or 4 times to get medical testing done. Today he was busy with spelling, Legos and other building materials, magnetic balls and one-inch magnetic colored sticks. We listened to some Jewish music and one of our nurses, Yo, even started to dance to it, was fun.
Continue to pray for Joshua to eat. He is on TPN and fats (lipids) and through the nose feeds. Every day I try to get him to eat three times a day even if is is only a bite.
Today he had four blueberies for breakfast. Lunch consisted of four gummis and five spoons of sherbet. We finished off
supper with six small pretzels. Hey, this was a good day! :>
The best news of all, if Joshua does fine with the spinal tap given to him on Friday, we are COMMING HOME ON SATURDAY!!
I called Sam and I could hear the smile in his voice as
he said, "cool, awesome". Thank-you for your prayers on Sam's behalf he is doing much better Les reports.
Pray for baby Zoe (shesmiles.com.) things are not going well and now suspect she is blind now. Such a Godly family, who knows God can heal Zoe if this is His plan for her. Pray God continues to surround them as they go through this valley .

May the Lord bless you and keep you,
God is a good God no matter what happens,
In His Love,
LesLie and her family

Sunday, August 24, 2003 8:46 PM CDT

Hello Everybody,
Les figured out the computer so .. here I am with an update. Joshua's counts are still hovering around the
100 - 200 mark so we have a way to go. I sure hope they jump and we can go home on Friday. The doctor we have now ( the attending doctors switch out every week), this one said, "I need to see Joshua a couple of days before I say anything."
His weight is up to 114 the same as his 11 year old brother, Sam. Joshua has no headaches for two days.Thank you for your prayers.
Joshua threw- up what little he ate today, just 2 oz. of peaches. His feeding tube came out in the process and
it needed to get reinserted. The whole ordeal wore him out and has been napping in and out ever since 4:30.
Something exciting happened today, Les was interviewed by 102.9 the mix radio station. They were holding a fundraiser for Children's Hospital- Vanderbilt and asked for family members to talk about their experience with Vanderbilt or how they felt when they found out their child had to stay in the hospital for an extended amount of time. Les did wonderfully, he is so good with words and communicating his
thoughts. He talked about how he and Joshua use to throw the football and how Joshua probably could not catch a nerf ball now. Les said I can't wait for the day when we can throw the football in the backyard again. He talked about how Joshua can hardly get out of bed to use the restroom. Les also said how Joshua was in ICU and no one knew if he would come out and Les was able to give God the glory on the radio that Joshua was out of ICU in three days. He was so stirring and emotional that it really drew the callers in to donate money. One lady donated $300.00 because she said Les' story touched her so. Les said he was just glad to help Vanderbilt, and he did. On a side note Rebecca had called from Texas during this time and was able to listen . The whole family was able to be together on it, made Mom happy.
A prayer note from this hurting mom. Sam is having a difficult time being separated from his parents and siblings. He like the rest of us just want to be together as a family at home.It just crushes me that I can't be with him all the time. We tell him it is ok to be sad and cry, but God doesn't want us to stay there too long. We talk about the " joy of the Lord is our strength" It is a hard lesson for us to learn as adults much less as a young boy.
If you would be so kind as to lift Sam up in your prayers, I will be a blest mom and I know Sam will receive more of God's strength and joy.
Bless you all,
Love in Him.
LesLie and her family

Saturday, August 23, 2003 8:10 PM CDT

Hello everyone;
This is Les at home. The computer in the hospital room is not allowing internet access. I didn't want you all to think we were simply getting lazy. I must confess however, when I was there on Thursday night, I went to bed so tired that I totally forgot. At the same time, there were really no changes with Joshua's condition. When You don't get new information, take that as we have nothing new to share.
The new medicine they started giving Joshua to help with his eating, turned out giving him a lot of dizziness. They have decided it's not worth the side effect, so he no longer gets it. Unfortunately they had to put the feeding tube up his nose to make sure he gets the nutrition needed. It's still very important that he eats the way God intended him to. The doctor that is in charge of his bone marrow transplant has stated that he would like to see Joshua put on a good 20 pounds by Oct. He probably hasn't put on that kind of weight in four years, much less in 5 weeks. He needs to be as healthy and strong going into the transplant as possible. Please pray with us that Joshua would get his old appetite back. Pray that he could eat without getting sick.
Joshua also asked me to ask people to pray for healing from back pain. Because of the headaches,He was instructed to stay in bed and lay flat as much as possible. This has caused some bad pains that come with lying too much.
Thank you sooooo much for all your prayers. We couldn't do this without your help and support.
With much love and gratitude. Les

Wednesday, August 20, 2003 10:44 PM CDT

Dear Ones,
We had a good day. The large intervenous doses of caffeine seem to be working. Joshua had a good morning which included talking on the phone to friend Sam and some homework.
From 12:15 to about 7:00 P.M. he rested. At 7:30 till
10:30 P.M. he did Legos and watched a movie with brother Sam.
He needs to drink more and eating would be nice.
No fever today . Things are looking up and we are looking up to the Lord.
Tomorrow Les and I do the switch for a day. He is back at work so the hospital stays fall mostly on me now.
The nurse just told us they are going to give him caffeine three times, She said Joshua will do school all day tomorrow.
Sam has been enjoying his stay here, at night he wears hospital p.j.s and during the day finds a wheelchair and wheels himself around the corridors for fun.
We are getting all tucked in bed or for Sam a lounge chair so it is time to say , Good night and sweet dreams

Love,
LesLie and the boys

Tuesday, August 19, 2003 10:22 PM CDT

Hey Everyone !
Great ending for the birthday boy!!
They gave Joshua the caffeine medicine and in about 40 minutes he perked up I am sure Les and Sam being there was a big boost also. He had to stay lying in bed but, he was able to open all his presents and enjoy his balloons, (thank-you Uncle Jim and Aunt Diana for the balloons).
Joshua also opened his cards (thank-you family and church family) and he also enjoyed the e-mails and e-cards. You all overloaded him with love and we thank-you for your thoughtfulness. The prayers went to God's heart and grace abounded, thank-you Lord. For fun we handed out chocolate kisses from Joshua today. It was fun going around saying "Here are kisses from Joshua." and handing them to Tina, his cleaning lady, and also his many nurses and doctors.
Right now he is bossing brother Sam around and telling him how to clean the room up so... you know he is feeling better.
Tomorrow he will get two separate doses of caffeine. I hope and pray he will have an enjoyable day with his
brother and me.
Our doctors are hopeful of Joshua going home by next Friday. I am all for it. They also would like Joshua to gain twenty pounds before the transplant, that will be a feat.
They started Joshua on TPN since his liver is looking better and the bilirubin count is down. He needs the TPN to get protein, for protein is the building block for white blood cells and we are in high need of those cells. Still only has 200 when the average person had 4000 - 10,000.
Thanks again for all the thoughts and prayers toward us.
God's Blessings,
Leslie Les, Joshua and Sam and our Texas girl,Rebecca

P.S. This was the second journal of the day.

Tuesday, August 19, 2003 12:51 AM CDT

Dear Ones,
It is my son's l6th birthday and we are spending it in the hospital just like we did sixteen years ago. When I was pregnant I said to Les "What will I do if it is a boy?'.
I had my little girl, Rebecca, I knew how to play with girls, especially since I was one, but what does one do with a boy, I thought. Les said , "love him". And that I have, from day one. When he was younger I made him a sweatshirt which said, "Mama's snugglebug" and on it were two bug, a mama bug and son bug. He is alot like me and I am so glad God had blessed me with him. Happy birthday,
my son, Joshua may God grant you many, many more. You are a blessing in my life and I am a better person because of you in my life. I Love you, Joshua.
The headache had returned full force and the fever won't quit. Even when presents and balloons started to fill the room he showed no sighs of excitment and turned down a chance to talk with his best friend, Sam on the phone, said
he hurts too much. So.. here he is lying flat on his back with is eyes shut, Happy birthday, Joshua, I sure hope tommorrow will be better. God , I pray for some mercy for Joshua for him to enjoy his birthday and feel better by the time his dad and brother, Sam come tonight.
The doctors are giving more caffine this time in the afternoon so not to hamper his sleeping. Other than that nothing has changed since I journaled yesterday.
God Bless you all,
Joshua,s Mama Leslie

I just checked out all the e- mails so many of you sent Joshua, How wonderful you all are,may blessings from the Lord fall on you all as you have richly blessed us.

Thank- you for your love and concern
you all are special to us. Love, LesLie

Monday, August 18, 2003 11:18 PM CDT

Dear ones ,
I had a beautifully written letter and I hit something and all is lost. I am not a happy camper. So you will get the shortened version.
Les is home after a much needed break. He took Sam to football practice and home to relax. Pray God revives him body , soul and spirit.
Joshua woke up today at 8:15 P.M. and felt well enough to play some computer golf. Anyone who knows me knows I think that is one of the most useless ways to spend time.
But , given how Joshua felt these past few days I was delighted he felt like doing anything and if it was computer games so be it.
The fever is 100.4. Joshua is to stay lying down, for when he raises his head the fluid from the brain drains causing the
ventricles in the brain to signal headache time. The neurologists are now involved in Joshua. They recommend a bolice of caffine to help with the headaches . A bolice is a large amount of anything given at one time. Joshua will not have anymore spinal taps till Aug.29th. Hopefully all these thing will work together and get him on the path of feeling better and wanting to eat. Joshua was put on small amount of Marinol an appetite activator Hopefully he will start eating and there will be no need for a feeding tube.
I believe we are on the up swing , God is with us and will never forsake us. Amen.... Amen.

Blessed night or morning to you all, Love , LesLie

Monday, August 18, 2003 1:06 AM CDT

Dear Prayer Warriors,
I have not so good news tonight. Joshua has been having terrible head pain the last two days. It's been so bad that the doctors did a MRI of Joshua's head. PRAISE THE LORD !!! the results came back negative. Everyone was very concerned and greatly relieved that the tests showed nothing. Now they need to find out what is causing all the pain. The nausea is also back. He hasn't been able to eat a thing for the past three days. That's not good. Joshua weighed in two days ago at 113lbs. He's very close to having a tube put into his nose and down his throat to feed him. None of the artificial feedings are good long term. He needs to eat.
Joshua has also had some high fevers the past few nights. They ranged from 101.8 to 102.7. The doctors are also adding another antibiotic to help fight a possible infection. They did a cat-scan today along with everything else to take a look at his lung and stomach area. No results on that as of yet.
Nobody can make any sense out of all these problems. His counts bottomed out almost a week ago. This is the longest it's taken for the cell counts to build back up. As long as he has no white cells, there is always the concern of complications. He sleeps 15 to 18 hrs a day now.
Please continue to pray. I don't ever like seeing him as miserable as he's recently been. I especially would hate to have him spend his 16th birthday on Tuesday feeling like this. We need God's grace and healing TODAY !!!
Thank you to so many of you who have taken the time, to wish Joshua happy birthday through the guest book. He hasn't been able to read anything for a couple of days now. I'm praying he'll be able to sit up and read everyones well wishes on his birthday. That would be special.
Please pray for this dad who is beginning to wear down. It is so hard to see my son hurt so badly for so long. I need to stay strong for my entire family, and right now, I don't feel up to the task. I feel that my foundation is cracking below my feet. I know that God will see us all through. This too shall pass.
Thank you so much for loving us. I don't even know many of you. God's kingdom is truly magnificent.
I love you all, Les

Friday, August 15, 2003 8:54 PM CDT

Dear everyone,
I have not been eating very much lately. So the doctor said I either eat 1800 calories a day or they stick a feeding tube down my nose. I have decided to start eating. I still have a bad headache. Everytime I breathe in it increses the pain. So please pray that God lessens the pain or takes it away. My toe is still hurting too, but improving. Please pray it goes away without surgury. Right now we are watching the Packers beating the Browns in the NFL preseason. I rode my bike here in the room for
12 min today. The nausea is lessening and I have not been throwing up my food either. I hope to be going home soon. I hope you all enjoy your day.
Love,
Joshua

P.S. This is Joshua's dad sneaking in a public service announcement, without Joshua knowing.
Tuesday Aug.19th Our Champion Warrior is going to be 16 yrs old. It looks like he will have to spend a very special birthday in the hospital. Leslie and I would love to make this birthday very special for him. If you would be so kind as to send Joshua a card, e-mail, or simply sign his guest book, we know it would really cheer him up. We have been seeing hints, that he is getting sick and tired of being sick and tired. This will be the first year that he won't be able to have a normal party.
Thank you all so much for all the love and prayers you've already extended to Joshua. Please pray that he keeps his joy through this home stretch.
Love you all, Les

Wednesday, August 13, 2003 5:21 PM CDT

Dear Everyone,
This is the second journal of the day. Joshua has been sleeping all day and sometimes kind of out of it. Had asked me if we were in Vanderbilt and when he would close his eyes would see blankets and other things. At one time when he was talking he said, "What did I say,Mom, Oh I just don't
know what I am saying". Physically the pains have lessoned
so that is a Praise the Lord. The doctor say since Joshua had such a good day yesterday lets just see how he is tomorrow.
On another note his bilirubin is high enough to say Joshua has jaundice. They think it is the T.P.N. ( the
liquid food and vitamins which goes into his chest catheter.)So...They are dropping that and 'pushing' him to eat by mouth or they will put in him via the nose the feeding tube. He is making a good effort to eat. Pray he eats enough so no feeding tube. Another thought is the anti -fungal medicine which he is on can cause bilirubin to climb. A small chance of this but there nevertheless.Now that we are working with meds that stop major infection
we have the Infectious disease doctors involved. They will see if these medicines can be changed if necessary yet still have him protected against the fungus, aspergillus. This fungus if you remember, caused Joshua's intestines to perforate in January and had infected his lungs to the point he had to go into I.C.U., where the doctors did not expect to see him come out of there alive. Pray for wisdom for the doctor deciding what to do . The cancer and transplant doctors also want to make sure all is set to go and aspergillus DOES NOT raise its ugly head ever again especially during the transplant time.
The toe is getting better and the headache is still bad but not like this morning.
Alot has gone on today but God is still in control and
knows all about Joshua and you and me for that matter.
God's Blessing on you all
LesLie and Joshua

Wednesday, August 13, 2003 11:20 AM CDT

Hi everybody,
I get to journal again today. Nothing really new has popped up that is really bad, but some of those little things just seem to not want to go away. Today I woke up around eleven o'clock. I have noticed that I need around fifteen hours of sleep a day. Also this morning I had a terrible headache. It hurts worse when I move too much. Then this morning after I got up from bed to sit in a chair I threw up, but it was mucous. So I still have some nauseous moments. I am try to eat as much as I can so I
do not need a feeding tube.
Mom takes over Joshua went to bed. I went out to tell the doctors Joshua was not feeling well and I came back in to Joshua singing praise songs. Very Cool.
Les will be here tonight so most likely you will get another journal.
Thanks for your Prayers,
LesLie

Tuesday, August 12, 2003 10:12 PM CDT

Hi Everyone,
Joshua said he would like to journal tomorrow, so
look for it before lunch.
God's Blessings,
LesLie and Joshua

Monday, August 11, 2003 9:47 PM CDT

Hello Everybody,
Joshua had a good day today,except for the headache
which continues to plague him. Fever is gone, thank-you
for your prayers. This morning Joshua received platelets and blood. His platelet count was boosted from 38,000 to
68,000 which was great, for the doctors prefer not to do any medical procedures if platlets are below 50,000. Platlets help stop bleeding. Joshua had a spinal tap today
or lumbar puncture as the doctors say. Lumbar puncture
sounds more painful to me than a spinal tap. Well the
big news is I watched the nurse do the spinal tap today.
Usually I pray and close my eyes, even though they have Joshua 'sleeping'. I almost fainted the first time they did it to Joshua and I wasn"t even watching the procedure.
The nurses sat me down and revived me with orange juice.
This is Joshua's 8th or 9th spinal and I thought I will
watch today. while Joshua is sleeping they move his legs to
his chest while he is laying on his side. She inserted a hollow nail as she calls it. This 'nail' has a needle which
does the puncture in the base of his spine. She listens for a pop then she knows she has hit the right spot in the spine. The needle is extracted and the spinal fluid drips out of the hollow nail they get at least 4cc. which the body will replace in 24 hours. She puts in airasee (phonetic spelling) which is cancer medicine then pulls out the 'nail'. Joshua comes out of his sleep remembering nothing and he his wheeled back to his room and bounces back in about a hour. So there you all have your
medical lesson for the day .
Have Blessed night or day (dependin on when you are reading this)
In His Love,

LesLie and Joshua

Sunday, August 10, 2003 9:08 PM CDT

Dear Ones,
I am back on journaling once again. Les and I are
proud of Joshua, we thought he wrote some interesting journals.
Les, Rebecca and I had a couple of wonderful days
together. Very pleased to have had a terrific send off for her.
We had a victorian style bed and breakfast. We enjoyed great meals, heart to heart talks,laughter and some tears. When we put her in the barrack style room void of any decoration and at least twenty triple bunk beds I thought with teary eyes, this is not her pink cozy bedroom at home. I did feel a little better knowing she would be there for less than a week .The room she will really live in is for six girls and is at least painted white. She will be a very busy girl.
Next week she is off to Colorado to climb Pike's Peak.
After that it is daily exercise, a job on campus and classes. I am sure there will be more and we will find out as she does.
Mr. Mike and Mr. Dale took great care of Joshua . The
Pugh's took Sam under their wing while we were gone and I would like to publically thank them for the giving of their
time.
Now on to my favorite champion warrior, Joshua. He has
an ingrown toenail, normally one would say no big deal.
Now that Joshua has only 100 white cells (normal 4000-
10,000) it has shown to be a problem . It is now deep
purple. he is soaking it 3x a day but until his counts
are up a foot doctor cannot work on it. This has also cause a fever of 102.6. The prayer request is hurry up white
cells and produce so they can attack the infection.
Joshua still has the headache that he had from this morning. Pray it would leave.
Tomorrow we will try to start some schooling. I pray he feels good enough to start the ' greatest game' as my mom
says.
I pray this letter finds you all doing well and loving the Lord more every day.
God bless,
Leslie and Joshua

Sunday, August 10, 2003 12:02 AM CDT

Well my parents dropped Rebecca off safely in Texas and arrived home at midnight on Saturday. I found out that I have an ingrown toenail. It hurts really bad. The doctor set me up to soak my toe three times a day, in warm water, with Epsom salt, for thirty minutes. I still have a headache with my legs and arms very sore. Mr. Mike took Sam to church this morning. They both enjoyed it. I slept over ten hours this morning. I plan to take a shower later this afternoon. My mom will spend the night with me tonight. She will be journaling tonight. My dad will spend some time with me today then take Sam home tonight when he goes. It will be nice to see my parents again after 3 and a half days. I hope your Sunday morning was good. God bless you.
Love,
Joshua

P.S. I just found out that I have a fever of 101.6. Please pray that the fever would leave. Thank-you

Saturday, August 9, 2003 3:39 PM CDT

Well today my parents are on their way home. They will be back at the hospital on Sunday. Your prayers are working wonderfully. I had a good nights rest, I can hardly feel the nausea, and no pain in my legs. God is good. Today I plan on enjoying some time with my brother because he is here with me today. It is really nice to see my family when they come to visit or spend the night with me. It makes the day go by so much faster. Right now I am feeling a little dizzy with a headache. Which is something you could pray for. I hope you have a great day.
Love,
Joshua

Friday, August 8, 2003 1:56 PM CDT

Dear Prayer Warriors,

Another one of our good friends has passed away this week, Mrs. Laurita LaCoax. She was a mother to four and a grandmother to seven. Her youngest of children are still in their teens. So please pray for her family as they work through such a hard time as this.
Last night was a restless night for me, but no cramping. (Thank-you Jesus) With Physical Therapy I was on the bike for 20 minuets, but afterwards I threw up. I did feel better exercising. Right now I am having some pain in my legs and still can feel the nausea. So please pray for those things and that I get a good nights rest tonight.
Thank-you for all the work that you have done for the Kingdom.
Love,
Joshua

Thursday, August 7, 2003 5:32 PM CDT

My parents have now left the state with my dear sister Rebecca. As you are praying for me you can also pray for there safe arrivel too.
Last night was really rough for me. I had lots of cramping and pain last night. Mr. Dale and I were not able to get to bed till 3 in the morning. The nurse gave me lots of medicine, but none of it seemed to work until the medicine made me so tired, that I just fell asleep. This morning I woke up with some pain, but it was alot better than last night. My red cells were low today so I got transfused twice. Mr. Mike is staying with me now until my parents get back on Sunday. I very much enjoy reading those who sign the guestbook. They really lift my spirit throughout the day. The doctor's say I can go home when my counts come back up. I can not wait to see you all again. It will be a fun time when I am at church again too. God bless you all for your prayers and support.
Love,
Joshua

Wednesday, August 6, 2003 11:45 PM CDT

WE HAVE A PERFECT 10 !!!
Yes! we received the wonderful news this afternoon. The lab has found a perfect bone marrow match for Joshua. All ten characteristics match perfectly. THANK YOU JESUS !
What this means is that someone out there somewhere in this world, has at one time, gone through testing to donate bone marrow. The medical staff now has to contact this individual to see if they are still willing and able. Please pray for the health of our very giving donor.
We certainly will let everyone know when we have a done deal.
Joshua’s condition has not changed since Wednesday. He still is having to deal with some nausea everyday. The medications that they give him regularly now, help him from having too many outbursts of high pain or nausea. He feels somewhat uncomfortable most of the day, but not often unbearable.
They‘re doing lumbar punctures on Joshua. This is known also as a spinal tap. What they do is put a needle into his spinal fluid. They draw fluid for samples to check cells for content such as protein, sugar. They then inject chemo into the spine to keep spinal fluid clean from cancer. They have found some undeveloped cells called blast cells in his spinal fluid already. It’s important to kill these cells before they become anything. They are planning to do this twice a week. He had one yesterday on Tuesday and had a lot of pain from it. Another planned on Friday. Please pray against any complications or pain that may occur because of these procedures.
Leslie and I will be leaving early Thursday morning to take our daughter Rebecca to the Honor Academy in Texas. Joshua will be in very good hands. On Wednesday night, a good friend from church, Dale Hardee will be staying with him. Thursday through Sunday afternoon, the Godfather, Mike Pfieffer will be keeping our boy company. Please pray for our trip with Rebecca. We want to get there safe, and would really like this to be a special time with just the three of us.
Joshua said that he’d be writing the journals while we are out of town. I hope you all enjoy getting updates from our Champion Warrior himself.
We love you all, Les and Leslie

Monday, August 4, 2003 5:32 PM CDT

Dear Ones,
Joshua and I have had an uneventful day. He has the normal problems that go along with chemo and you all know them by now, nausea, vomiting, poor eating if any eating. The cramping has lessened, thank-you for your prayers. Today Joshua received a blood transfusion. The nurses give him Benadryl so he doesn't feel sick when the transfusion is taking place. Thus,
we are having a quiet afternoon for Joshua is in dreamland.
We were told Joshua may go home next week. I can hardly take that in. Be in the hospital only two weeks? unheard of for Joshua. My mindset always goes back to the first admittance and all the problems we had. I thought that was
normal but to fine out happily this is normal. We have had smooth sailing this past week, Thank - you Lord.
Wednesday or Thursday we will find out about the other bone marrow match. Then it comes down to when this person can get to the hospital to be stuck hundreds of times with a needle to get out his or her bone marrow for Joshua. This person is usually sore for 24 hours, and is off of work for a couple of days. What a blessing it is to have a person give of himself or herself for someone he or she does not even know. Bless this very special person Lord.
This week Les and I take Rebecca to Teen Mania Honor Academy in Texas. I am one mom who Loves having all her children under our one family roof. Here I have Rebecca off to Texas, Joshua to be back in the hospital with a marrow transplant and Sam with a homeschooling loving family. So much for our little family under one roof. Oh well, such is life. I am thankful GOD does not change.
Les is taking over tonight, I will get Sam from football tonight and enjoy time with him.
Blessings to you all,
Leslie

Hello everyone,
This is Les taking over the home front at the hospital. I arrived tonight just in time to be tortured by some awful play from our beloved GREENBAY PACKERS ! We were actually glad when they suspended play in the 3rd quarter because of storms.
Joshua felt pretty good again until right before going to bed. The all too familiar nausea hit him. It's not a bad time however to be medicated. He was planning to go to sleep anyway.
Thanks for your prayers,
Love you all, Les

Sunday, August 3, 2003 10:10 PM CDT

Dear Ones,
It is Mom's night with Joshua. I have not been here
much. Les is blessing me with lots of time with Rebecca and
Sam before Les goes back to work, for then I will be the main one with Joshua .
In the room next to Joshua a two year old passed away this past week. My Uncle Al passed away this week. Now in our church family the mother of one of our church elders died and hopefully you all read in Les's last journal about Steve, a wonderful servant of the Lord who just died. Many thoughts are running through my head, one of them being, I believe death has no sting for the believer.
For the ones left behind there is the wonderment of absent
in the body present with the Lord thought which boggles my mind, being right in the throne room of God my other thoughts are, "I'm tired Lord."I am then reminded to take His yoke for it is light. I see our very next breath is in the palm of God's hand.
Seeing, and hearing about death so much lessens death's
'scare' grip on me . I believe once we are not afraid
of death Then and only then can one truly live.
Joshua had severe stomach cramping which required
the full strenght of Adavan which also puts him to sleep.
Our nurse, Anthony,said he would rather have these annoying
problems than face what Joshua went though in the Dec.-
Feb. stay.
Blessing on you all,
Leslie and Joshua

Saturday, August 2, 2003 10:24 PM CDT

Dear family and friends,
I really have mixed feelings as I write tonight. Sam (Joshua's younger brother) has really picked up Joshua's spirits while being with us here at the hospital. He came on Friday and will be staying here until we go to church together on Sunday. The boy's have played just like at home. They enjoyed some video games, late night movies, and even got to watch some pro football with Tampa Bay (Sam's faviorite team) playing the Jets. Joshua was able to sit up most of both days feeling pretty good until tonight. He ended up getting sick twice right before going to bed. After a nurse clean up and a good dose of benadryl, he's sound asleep. It was really good over all to see Joshua laugh and enjoy himself just like the old days. I think the sibling activity kept his mind off of the pain and discomfort.
My mixed feelings come from the sad news that our good and longtime friend Steve Standard has died tonight. It's even unbelievable to type those words. When Leslie called me here at the hospital with the news, my first thought was how the boys were going to take the news. Joshua turned away without saying a word. After about two minutes of silence he turned around with a wonderful smile on his face. I was really surprised until he uttered the words, "Mr.Steve in heaven." He knew from his relationship with Mr.Steve, that if anyone was going to enjoy heaven, it was going to be this faithful servant of God. You need to understand that when Joshua had his coming into manhood celebration, he chose Steve Standard to be part of the group of men that would speak into his life as a mentor. He was already someone that Joshua looked up to. He was already a mentor for many years. This was just a way for Joshua to declare it to everyone.
Joshua just recently had an opportunity to share with a large and popular, secular radio station about his burden for so many people going to hell. Steve had many years of influence with our young evangelist. There's no doubt in my mind, that there was a piece of Steve Standard speaking through Joshua that day. I can't count the times I personally saw Steve put his big arms around Joshua at the alters during prayer time. He'd see Joshua crying and would simply mentor him with wisdom on what to do with such a burden for the lost. Nobody knew this better than Steve.
Steve Standard is going to be missed. He may have left us to receive all of his crowns in glory, but his passion is still here. HE LEFT HIS LEGACY !!!
Please help us pray for Steve's family. Especially his wife Peggy.

HONOR STEVE'S LIFE, PRAY FOR THE LOST !
I love you all, Les

Thursday, July 31, 2003 11:31 PM CDT

Hello everyone,
We came into this round of chemo thinking it may be Joshua's best. He was feeling fairly healthy and strong. As we mentioned in the last journal, this is the first time he doesn't have leukemia coming in. I wish I could report that everything is going great. After just 48 hours of this chemo however, he is experiencing some pretty good nausea.
Last night he got so sick to his stomach, he had to throw up twice. Tonight again, just before going to bed, he needed some strong medication to help him sleep. The daytime hours seem to be a bit more kind. He still had to put up with pain in his head, back, legs, and arms most of the last two days. This morning the doctor gave us the indication that the strong chemo he's getting this round, could be the reason for all the trouble. She wasn't surprised.
Today Joshua was interviewed by a Nashville radio station. They are doing a radio-thon for three days on Aug. 22, 23, and 24th. Much of it is going to be broadcast right from the hospital. They walked the halls interviewing some of the kids today to be played (after editing) on the weekend of the 22nd. It's to raise funds for the new Vanderbilt Childrens Hospital. I wish you could have seen their faces, when they asked him what he wants to be when he grows up. He proceeded to tell them that he would really like to work as some kind of engineer, but that he believed God was calling him to be an evangelist. When asked why he believed that, he spoke very boldly about his burden for so many people dying without eternal salvation. He told them that he wanted to keep people from going to hell. This is a very popular non Christian station being told this by our Champion Warrior.
Joshua and I are going to get a visit from Leslie and the other two kids on Friday. Leslie went home on Wed for 5 days to work and spend some time with Sam and especially Rebecca before we take her to Texas next Thurs. Don't tell anyone, but if you happen to run into Rebecca on Friday, be sure to wish her a happy 18th birhtday. What a beautiful young women she has grown to be. We are very proud of her.

PLEASE PRAY FOR:

All pain and naseau to be gone in Jesus name.

No infections to sneak in while Joshua's counts drop.

Many teenagers to hear Joshua on the radio when
they play it. May the Spirit of the living Lord
cause them to question how this 15 year old in the
hospital with a life threatening disease, can be
so calm and at peace.

Rebecca's birthday. That it would be a blessing.

Thank you for checking in with us. Your prayers are so needed. We couldn't get through this without you.
We love you all,
Les and my champion warrior Joshua.

Wednesday, July 30, 2003 10:25 AM CDT

Dear Ones,
Sorry we haven't been able to get an update up, but the computers have not been working at the hospital. Thank you for your patience. Joshua got in his room at 3:00 PM and he started chemo at 6:15 PM on Tuesday. Once again, we prayed over the chemo bags before he started. We had an uneventful night. Praise the Lord! It is strange coming into the hospital when Joshua is so healthy. The only thing he's been experiencing is cramping and slight nausea. (He hasn't thrown up for over a week though.) He also still has some leg pain still hanging on from February. These things are all relatively minor when you compare them to cancer, and this is the first time Joshua is coming in cancer free. The doctors and nurses have high hopes that Joshua will do quite well this time around.
We had an enjoyable two weeks at home. Thank you Lord for the extra time. The boys were able to sleep out in our new tent and Rebecca and I got to go see a play, "An Evening With C.S. Lewis". We had a great mother-daughter night while the boys roughed it in the yard with Dad. As a family we watched movies, lit sparklers, and just had a lot of fun. We finished off the two weeks with another family prayer and a group hug as we went off our separate ways once more.
When arriving at the hospital yesterday I asked about a family that I had built a relationship with when I was there last time (the Cleave family). They have an adorable 10 month old girl named Zoe who the doctors believe has had leukemia since birth. Through a spinal tap they found that Zoe has leukemia in the spinal fluid which has carried into the brain. The doctors can offer nothing now and have sent her home to die. Please pray for this precious family with us. I was heart broken and crushed when I heard the news. This has made me realize again what a vicious killer this disease can be. There have been three deaths in just the short time Joshua has been at Vanderbilt. Now we know of two more children who were sent home to die for the hospital could offer no hope. That makes five children and I knew four of these children. It's a constant reminder that our every breath depends on the Lord. The Cleave family loves the Lord and they are leaning on Him. Baby Zoe has a web page similar to Joshua's if you would like to check it out. The address is www.shesmiles.com
Blessings to all.
Love in Christ,
LesLie (and family)

PS Please note that Joshua's room and telephone number have changed. Oh, and by the way, if you get the chance check out the new pictures in the photo album. We have a great friend who changes them for us about twice a month. (Thank you Will!)

Thursday, July 24, 2003 8:58 PM CDT

PRAISE THE LORD!!!

Hello Everybody,
God is sooooooo good. Leslie and I are so excited about today's news, we are writing this journal together. We were told early this evening that Joshua is officially in remission. ( That's man's way of saying HE IS HEALED.) The spinal tap came back negative. He has no cancer in his body.
As if this news isn't good enough, there's more. As some of you already read earlier from Leslie, Joshua was called into the clinic because of what they found when doing his culture. We were told he would have to be admitted into the hospital to receive antibiotics for a gram-positive blood infection, otherwise known as a staph
infection.
After drawing more blood and having two doctors check him out, they decided there was no justification to keep him from going home. Dr. Janco stated, "Joshua is doing great, there's no reason to keep him." The doctor was so impressed with Joshua's condition, he didn't even put him on antibiotics.
We also found out tonight, Joshua will begin his next round of chemo on Tues. July 29. The plan is for one round of chemo followed by recovery, possibly two more weeks at home, then back to Vanderbilt for the bone marrow transplant. We were told 8 to 12 weeks in hospital for the bone marrow.
Thank you so much again for all of your prayers. Please keep them coming. As you now know, we still have a long way to go. We're still trusting Him.
Love you all,
Les and Leslie

Thursday, July 24, 2003 11:11 AM CDT

Good Morning ,
After a camping night out in our tent in the backyard with good friend Sam, Joshua had to break the fun and return to Vanderbilt Clinic. A nurse called and said Joshua's blood culture tested positive for gram-positive
infection, in his chest catheter. The infection most
likely is a staph infection. Many times this can be treated at home so pray along with us that Joshua can come home today and does not have to stay at the hospital.
Just to let you all know what a fine husband I have,
this is Les's third time to take Joshua to the clinic this week, he wants me to be home for he knows I will be at the hospital most of the time once he gets back to work.
In His Love,
Leslie, Les, Rebecca, Joshua and Sam

Wednesday, July 23, 2003 12:30 AM CDT

Hi Everyone,

Yesterday Joshua had an appointment for a spinal tap.
He was unable to get the spinal tap though because he threw up when he got to the clinic.(They cannot put a person 'under' if they throw up.) So.. today Les and Joshua are going back to do the spinal tap, pray it goes well. The past spinal tap showed no leukemia in the spine. I am a little past due in telling all of you those results, sorry.
We hope to have Joshua home till Friday. He is doing
quite well at home, except for the nausea.
It is great to be home together in the same nest.
All is fine. When we know more we will share it with you all
Thanks for checking in.
In His Love,
Les, Leslie, Rebecca, Joshua, and Sam

Sunday, July 20, 2003 2:32 PM CDT

Hi everybody,
Thank-you for all the guestbook signings. I try to read them twice a day. They are really helpful at the hospital because I feel disconnected from the outside world and it lets me know people still care. My time at home has really refreshed me for my next stay at the hospital. We just celebrated Rebecca's birthday on Friday and we will do mine tomorrow on Monday. I recieved some of my lego sets in the mail from ebay. I built them already and have played with them a bit. My brother and I were also able to have a friend over on Saturday. I thank-you so much for your prayers and cards. They are such a blessing. I can not wait to see all of you again.
God bless you,
JOSHUA

Friday, July 18, 2003 9:42 PM CDT

Hi Everybody,

Wednesday was great, I loved seeing Joshua laugh
while eating my homemade strawberry pancakes. I have been
making everyone's favorite meals from breakfast to supper.
However, Les made the supper Sam chose which was appetizers
including homemade potato skins. Yum.....!
The doctors decided it was too early to do the
heart test because they just did one last week.
They did do the blood work to check Joshua's counts and all looks wonderful.
We are celebrating Rebecca's and Joshua's birthday
this week since we are all together. (Really Rebecca's is August 1st and Joshua's is August 19th.) Joshua will
be in the second round of chemo soon so we thought we should celebrate now while we are all at home. We are sure enjoying our time together. It will have to hold us till Rebecca comes home for Christmas.
Each day is a gift from God and we are enjoying all
of them.
Love,
Les, LesLie, Rebecca, Joshua, and Sam

Wednesday, July 16, 2003 10:08 AM CDT

Hey Everyone!
Once again I am privileged to get to write the daily journal! Yesterday was a better day for Joshua. Monday Joshua had thrown up about 6 times, but yesterday he only felt nauseous until about ten A.M. He was able to eat a light supper and keep it down! Praise the Lord! We had a nice day together as a family. Joshua and Sam got to spend some good brother time. We’re trying to enjoy every moment we have! Tomorrow Joshua is going to the clinic to get his counts checked and to get his heart checked for the blood flow, so be praying that the results are good! As always, thank you for lifting up our family in your prayers. Every individual prayer definitely makes a difference!
Love in Christ,
Rebecca and the Nienow family

Monday, July 14, 2003 10:21 PM CDT

Hi Everybody!
This is the first journal I get to write and what an exciting one to do! Joshua is home! He came home today at about 4:30 PM. It was wonderful to be together as a family again at home! We had a great dinner, but unfortunately Joshua couldn’t eat it because he had thrown up his lunch earlier in the day and his stomach still felt a little sick. So while our family ate tacos Joshua had saltine crackers and diet 7up. The home healthcare medicine was delivered and Mom and Dad received a refreshing course on how to administer all of Joshua’s medicine. Then our family just relaxed and watched a video of an evening church service in February that had been dedicated to Joshua. This was the first time Joshua got to see the video and he enjoyed watching it. We thank God for the beauty of family time. Joshua was doing pretty good the entire evening, but right before he went to bed he did throw up his small supper. Please pray that he can keep his food down!
Also, though we are rejoicing now that he can be home, he is scheduled to go back next week to the hospital to have another round of chemo. Then he may just stay in the hopsital until the bone marrow transplant is completed which could mean several months. The doctors want to do another round of chemo to make sure all the leukemia cells are killed and it will also give them more time to look for a better bone marrow match. Right now the best match they have matches Joshua 8 digit characteristics out of 10. If they can find an even better match than they already have that would be great! Please pray that Joshua would get the donor God wants him to have.
So all in all things are going good! Our God is always faithful and will never leave us nor forsake us! We continually trust in him for everything, because he knows our needs even before we do! Thank you for continually lifting up Joshua in prayer! We love each and every one of you!
Love in Christ,
Rebecca and the Nienow family

Monday, July 14, 2003 1:39 AM CDT

Dear friends and family,
What a day we had today. Joshua had no lasting effects from last nights adventure. He had no dizziness today. Thank you Jesus. We had nothing but a wonderful day. We got to go outside again. We had a nice visit with Kelly, who is Joshua's make a wish volunteer. We then had a great family reunion. Leslie came with Rebecca and Sam. We hadn't all been together for over a week.

Joshua had a little cramping, and that's it !!! I want to thank everyone for praying. It obviously has made a huge difference. There's some talking going on about Joshua going home tomorrow. It sounds too good to be true, but then we know that all things are possible with God.

Good night to all,
With much love and appreciation,
Les and his Champion Warrior Joshua

Sunday, July 13, 2003 2:02 AM CDT

Dear friends and family,
I was all set to tell everyone what a wonderful day Joshua had today. His white cell count jumped over 17,000. The doctors told us during their morning rounds, that he no longer has any restrictions. It took Joshua no longer than five minutes to have his shoes and clothes on and out the door he went. He was so happy to feel the sun beat down on his head once more. It's been a month since he felt the fresh air. He came close to running people over, as he rolled up and down the halls in a wheel chair. He was totally disconnected from all the tubes, (at least for 30 minutes.) What a celebration we had.

As I sat down tonight around 11:30pm, to write all the wonderful news, I noticed that Joshua was shaking. When I asked him if something was wrong, he sat on the bed and just started crying. He then told me with slowed speech, that he was very dizzy and that his legs and arms wouldn't stop shaking. By the time we got every nurse and doctor in the room, he had real bad pain in his side and back. His temperature was down to 96. He could not sit up because everything was too blurry and made him dizzy.

They doctors decided after a mini conference, to give him medication for the pain. They ordered x-rays to look at the chest and heart area. As of now, they were able to take the pain away. He is still not able to sit up, much less stand without feeling disoriented.

Something very simular to this happened to Joshua about a week ago. Nobody was able to figure out what it was, or what caused it. We really need God to give wisdom to the medical team here. It looked like we were very close to going home. They were saying possibly in 3 or 4 days.

Would you please join us in praying down this unknown attack on his body. Continue to pray down the pain in his side and back. Pray that he will be able to continue eating. This just shows me again that we can never rest. Just when we think everything is ok, attacks come out of nowhere. I still know that...

NO WEAPON FORMED AGAINST JOSHUA SHALL PROSPER !!!
Thank you so much for standing with us.
We love you,
Les and his Champion Warrior Joshua

Saturday, July 12, 2003 1:35 AM CDT

Hello everyone,
Joshua and I had a great first day together. Most of the day was filled with fun and laughter. What a difference from our first chemo round.

GOD IS GOOD !!! The doctors removed one more antibiotic today. He should be getting his last neupogen shot on Saturday. The white counts climbed from 3900 on Thursday to 9800 on Friday. The whole staff is very pleased with all the counts.
If you don't understand any of the technical reports, just believe me when I say it's all great news.
They took Joshua down for a heart check today. This particular procedure actually checks the heart flow. There is always a concern by the doctors that the chemo may harm the heart. Please pray with us that all is well with that.
The test went well until they had to tell Joshua to lie still. He proceeded to rat on his dad and told them that he was wiggling because I was tickling him. I did confess my sin. ( I was only trying to make it more fun for my son.)
Joshua didn't eat a whole lot today. He had a good bit of nausea. He needed medication which helped him take about a three hour nap. I didn't want to make any noise while he was sleeping, soooo I forced myself to take a nap of my own.
You may understand now why I'm typing this end of day report at 1:30 in the morning.
Your prayers are working, Please keep them coming.
Love you all, Les

Friday, July 11, 2003 8:32 AM CDT

Hello everyone,
Well, we've made the big swap. My schedule has finally allowed me ( Les ) to let Leslie go home for awhile. That means for the next five days, you'll be getting the dad's perspective.

We just had a wonderful visit from my brother LeRoy, his wife Maggie and their son Luke. They had not been able to take a vacation for many years. They wanted to come simply to be a blessing to our family. I LOVE IT WHEN A PLAN COMES TOGETHER. They live in Texas, and just like the rest of our extended family, it's frustrating to be so far away at a time like this. Thank you LeRoy and Maggie. You were a breath of fresh air. A true blessing.

Nothing has really changed with Joshua. Last night he needed to take some medicine for pain, and just like the last few nights, he threw up. This has to stop before the doctors will allow him to go home. Please pray against this pain.
For those of you that check daily with us, you already know what to pray for. Those of you that are new, or have not checked lately, please read journal history. Leslie wrote Yesterday very specific requests.

If you haven't checked our photo album lately, please do. You can see Joshua with four Tennessee Titan players. Joshua was pretty excited because as big as they are, only one had bigger feet than his size 15. I want to thank my great friend Tom Luckey for sharing Joshua's story with all my old co-workers in Wisconsin. Thanks Louie, for calling your son. Thanks Jake, for bringing the other three guys over.
(Louie Sprague works at my old plant. His son is one of the players.)

I want to tell all of you who check with us through this website, thank-you. This all would be so much more difficult, if it were not for the love and prayers of so many.

We Love You All,
Joshua and Dad.

Thursday, July 10, 2003 2:50 PM CDT

Dear Ones.
Joshua has lots of leg and arm pain now and this pain is also making him feel sick. Another half dose of Dilaudid. Lately the medicine has been causing him to throw up ,not fun by any means, though he usually feels better after that.
Lord we need this pain to flee in your name .
Please pray,
Thank-you,
Love in Him,
LesLie

I did write an earlier letter this is just an extra because of the prayer need.

Thursday, July 10, 2003 12:32 AM CDT

Dear Ones,
Good afternoon. Joshua had received platelets and is receiving blood right now as he naps. He has had two half doses of Dilaudid today hopefully no more. Joshua rode the bike for seven minutes today. the PT people would like him to do another ten minutes.
The doctor came in and is pleased with Joshua. Before
they release him they are waiting on four things.
l. Staph infection is gone
2. White counts continue to go up and stay there
3. The pain is controlled by med other than Dilaudid
4. They have in place their plan of action for the
next step to fight the leukemia.
We are hoping and praying to go home next Thursday which will finish up this hospital stay at five weeks.
The change of the guard is happening tonite-
Les will be here till Tuesday afternoon.
I am so happy about finding a bone marrow match.
When I found out about the bone marrow match I was happy and thrilled at first, later grateful tears filled my eyes as I realized a complete stranger from who knows where would want to save my child's life. How can I express my thanks to this person? Thank-you Lord for making this all possible.

Thanks be to our mighty God!

In His Love,
Leslie

Wednesday, July 9, 2003 11:38 PM CDT

Dear Ones,
We are having a great night. Only half dose of Dilaudid
was need tonight. We had a fun talkative night with our nurse and even played a 'trick' on her. She told us about a boy who raised his bed and fell out of it pulling on his chest cather to the point he thought he pulled it out. Our nurse left our room and Joshua decided to reenact what the child did. So..Joshua raised the bed, laid on the floor and I open the door then he moaned loudly. Our nurse, who told this story plus our midnight nurse came in. There Joshua was moaning and smiling and I am laughing so very hard.The midnight nurse got scared for a couple of seconds and the afternoon nurse was caught off guard just for a split second (she is too level headed to be caught off guard for any longer). I took a couple of pictures. WE all had a great laugh together.
One thing we have learned when one is in the hospital for long periods of time nurses and patients play jokes on each other. This is so good for all of our spirits because so often things are not going good so when they are we look to have fun. Laughter is like medicine to the bones isn't that what the Bible say? It was something I needed for I had a bout of homesickness today. Missing Les, even though I just saw him. Rebecca, who is in Florida and leaving in a month for Texas and Sam experiencing all sorts of things and I am not there to enjoy them with him.Our fun helped me get out of my funk and to have a cheerful smile again. Thank God for laughter.

Our prayer request is Joshua is allowed to go home by next week.
Bless you,
In His Love,
LesLie

Wednesday, July 9, 2003 3:26 PM CDT

Dear Ones,
Good afternoon. Les and his brother,LeRoy,sat in with Joshua while Maggie and I went out to eat at a pleasant
place it was like the Alanta Bread Company. Then we went to a old bookstore and bought somme great old books.
Joshua ate some grilled cheese and chips .and is doing very well. You all know the pains Joshua is having ,they keep cropping up other than that no new pain.
The news of today is the white counts are 2000 and
the neutrophils are 1200 all good news. The counts are coming up so beautifully because he is getting shots to raise them.
The other exciting news of the day. The transplant doctor told us today he has a match for Joshua but it is an 8 out of 10 characteristic match. The two that don't match aren't as critical as the eight that do match.
Now... There is another person out there who is looking like a better match, but molecular testing takes
time..The transplant doctor said since Joshua did so well during this round of chemo, he would rather Joshua have another round of chemo (even if there is no leukemia present.) This is to insure leukemia does not rear it's ugly head before the transplant. This may be in a month or two months. None of this is carved in stone, sooo... we will let you all know as we know.
Have a good day, we are.
Thank-you for your prayers
Love In Him,
Leslie and Les

.

Tuesday, July 8, 2003 10:03 PM CDT

Dear Ones,
Good evening, we are having a great night. The last half hour we were cutting up with two of Joshua's nurses.
It was good to see my son so cheerful and full of life.

I found out the doctors came in early this morning but we both were in dreamland. So....they visited us tonight. Talked to us about the pain Joshua is having.The back and side pain is called hyperaesthesia, meaning the nerves in those areas are confused. Because the pain was so intensed in those areas the nerves keep signaling the brain,"we hurt", even though they don't hurt. In time this will lessen. Time .....
Joshua had a four hour nap this afternoon. I took one too, that way tonight we can be awake together.
God bless all of you,
In His Love,
Leslie
P.S. Will Orr, a friend from church, put up new pictures of Joshua... check out the photo album.

'

Tuesday, July 8, 2003 2:13 PM CDT

Dear Ones,
We have not seen the doctors yet. There was a big meeting today and that is all I know.
Joshua had severe back pain this morning,7:00 a.m.
was given some Didlaudid and went back to sleep till 10:00.
He watched the Price Is Right. I think soon Joshua will be able to compete on the show. He showered, had physical therapy, which included throwing a ball with the therapist
and leg stretches. He and I read about Abigail Adams and
Samuel Adams, (Mom tries to slide in school whenever she can.)
Joshua had a bad bout with nausea so.. some Benadryl and off
to hopefully a restfull sleep.
We are still waiting for the results of the spinal tap concerning leukemia. Other than that I don't have any more news. Continue to pray the pains in the legs, arms,side and back would leave in the name of Jesus. Joshua can not go home with Dilaudid and he does not want to be here any longer than he has to ("I just want to go home", he said.)
So.. to get to home, this pain issue must be resolved .
Anyway it still is a great day because the Lord has made it.

Love in Him,
LesLie

Monday, July 7, 2003 9:37 PM CDT

Dear Ones,
I am getting my night journal out early. Les came tonight and we both watched our boy, Joshua sleep for a little over two hours. He woke- up from his late afternoon nap ready to eat, had some chicken. Then he got on E-bay to check out his Lego buys.For the final fun of the night he pulled out most of his hair, that's when Les said he had to go.He thinks that is gross.
The bone marrow went well. All is o.k. with what they checked so far, All that is left to find out is if there are
any leukemia cells in the spine. We are believing there aren't any.Amen.. Amen.
It is 10:00 p.m. and Joshua has gone back to bed.
Pray no body pain and a restful night. For last night we were up till 1:00A.M. with body pain.
Thank-you for your continual prayer support,
In His Love,
LesLie

Monday, July 7, 2003 12:48 AM CDT

Dear Ones,
WE had great news today. the MRI showed no difference from the one taken in January, so nothing is wrong with his brain. Thank-you Lord!
The spinal tap is now to be done around 2:00 today. Among other things they are looking to see if there is any leukemia in the spine. He has not been able to eat or drink since midnight. Nothing, till after the spinal, he seems not to mind.
Joshua received platelets and blood today, which should give him more energy.
Les is coming today, so that will be nice. We are hoping to go home in 2 weeks. This would be wonderful for us to be all under the same roof again, especially since Rebecca is leaving in just more than a month.
Enjoy your day, for this is the day that the Lord has made; we will rejoice and be glad in it.
In His Love, LesLie

Sunday, July 6, 2003 10:25 PM CDT

Dear Ones,
Joshua went for his MRI at 1:00 P.M. we were back in a
hour. On Monday it will be read. So... pray for a clean
reading. He will have a spinal tap tomorrow, we were told between 9:00 - 10:00 A.M.
The usual pain for Joshua,especially at night is arm, leg,
back,and side. Pray the pain leaves him.
Joshua is now pulling tufts of hair from his head. He thinks it is fun to do. We are going to take a picture tomorrow.

Goodnight to all,
In His Love,
LesLie

Sunday, July 6, 2003 12:25 AM CDT

Dear Ones,
Good afternoon everyone. The joy of the Lord is our strengh. Joshua is getting a MRI today and a spinal tap on
Monday. Last night as we were talking and laughing and discussing being at the Ronald McDonald house he just starting crying (he told me he was homesick later), sat up in bed and coughed up mucous and fell over on my legs unable to sit himself upright. I slid out from being under him and he laid sideways on the bed. I lifted him up, since he could not hold himself upright, till he was done coughing
then I laid him down, because he still had no control of his body. In the middle of this I rang for the nurse because I was scared he was having a stroke, which they ruled out after
looking at him (no sagging jaw). The nurse left and Joshua said the t.v. was red and got frightened because he saw a scary man's face behind me. Well, this mother had her spiritul armor on and went into spiritully cleaning this room of anything that wasn't of God. Thank- you Lord nothing else was seen. He had not been taking anything that would cause hallucinations. The nurse gave him Dilaudid for the pain he had in his arm,legs, side, and back. Even this morning he did not remember receiving the medicine,and said much of it was hazy. We are on the way to the MRI - will inform you all later.

In His Love,
LesLie

Saturday, July 5, 2003 10:54 PM CDT

Dear Ones,
To all you late night readers or early risers. We
have had an uneventful day, this is good. Our wonderful
doctor, Melissa Rhodes said, "we love boring, boring is great." We agree. Joshua is hoping to get off his sleeping
pill tomorrow.
Joshua is starting to eat the hospital food.He eats about one-third of the meal. The news of the day, he is starting to taste the food, he realized this when he said, "yck" to one thing and "Oh,this is good." to another.
Again , thank-you for your prayers
Good night and God Bless,
LesLie

Saturday, July 5, 2003 2:42 PM CDT

Dear Ones,
Thanks for checking in. Joshua had a good night in
general till about 4:00 a.m. He woke up with pain in the arms, legs, back and sides it was Dilaudid which took the pain to a 1 or 2. He asked me to hold his hand till the pain
loosen its grip on him. I was glad to be there for him, isn't that one reason God made mothers? His counts are looking like they are on their way up. They are .5 (500) today. They have been .4 for a while. On Friday the 4th. Joshua noticed he was starting to lose hair to add to that his head in VERY tender.
Les' brother, LeRoy, wife, Maggie and son,John Luke, will be here for two weeks. Maggie has been a great help to me, even helping me dig weeds. While LeRoy and Maggie both showed and taught Rebecca how to waltz and steps to some other dances. LeRoy said, "she learned fast". Now if Sam or Josh could learn she could have a partner to practice with.
Emotionally we are all ready to be under one roof.
Pray for God's strength in all of us for this. Thank -you.
We are more than conquerers in Christ Jesus.
In His Love,
LesLie, Les Rebecca, Sam,
Our Champion Warrior Joshua

Friday, July 4, 2003 10:32 PM CDT

Dear Ones,

Happy 4th of July! Guess what? Since Joshua hadn't had a fever or any other sick symptoms, the doctors and nurses allowed Joshua to don gloves and a mask and he with three other children and their parents were wisked through the empty corridors to the elevators, then to the 11th floor adult cancer ward. We were shown an out of the way room, where we were able to enjoy the Nashville fireworks.
Smiley faces, outlines of red hearts and a colorful grand
finale. What a show they put on for us.
I came back to the hospital today after being home for 48 hours. My
weeding is almost done, at least in the front of the house.
It was sure nice to snuggle with Rebecca and Sam on the couch.
Les reported Joshua was taken off another antibotic, that brings it down to seven. God is Good. Joshua had three x-rays in the lung region today. The doctors are happy the fluid in the lungs is not layered, whatever that means. We're just happy the doctors are pleased with that knowledge.
Vanderbilt had a cookout on Friday. Joshua had 2/3 of a hotdog and some chips. He did o.k. even though none of it was organic. He was unable to taste the food because the chemo has temporarily killed the tastebuds. He did however still get the calories.
(very important)
We thank-you for praying on our behalf,

In His love, LesLie, Les, Rebecca, Sam and our champion warrior, Joshua

Thursday, July 3, 2003 2:26 PM CDT

Hello friends,
Let me confess to all of you, that I'm a little intimidated to be doing todays update. My wife gives me a tough act to follow. I think she's been doing a great job of keeping everyone( including me ) informed of Joshua's daily condition. With the kids and me pretty much being at the house, there have been a few times, I have had to find things out, the same way the rest of you do.
Well, today I'm in the drivers seat, and I have to tell you, that all is quiet and actually uneventful.
PRAISE GOD!!!
Today's bacterial culture came back negative. Because of this, they have discontinued one of the antibiotics. This is great news for his kidneys. The less the better, as Leslie shared with everyone in yesterday's journal.
The shoulder and side pain has been minimal( giving a good indication that the fluid in his lungs has not increased, thank-you Jesus. ) When I asked Joshua how everything was feeling today, he said that he had some nausea and felt kind of sick. He then made the comment " if this is as bad as it ever got, that would be great. " I couldn't help but think that when I feel nauseous and sick to my stomach, that's as bad as it gets. Yet he says that would be great. What a warrior.
Thank-you all for standing with us during these opportunistic days. What a wonderful time to grow our faith and trust in our GREAT GOD AND SAVIOR.
Thank-you all so much for your greatly needed prayers.
With much love and appreciation;
Les, Leslie, Rebecca, Sam and our
Champion Warrior, Joshua

Wednesday, July 2, 2003 7:37 PM CDT

Dear Ones,
Good evening. Joshua woke up about 2:30 p.m. Still a slow going day, we did write some poems, though.
They aren't taking Joshua off any antibotics after all.
For they were concerned about his blood pressure last night
it was down to 73/31, the doctors want to make sure all is well on every front before they take him off any antibotics.
My husband, Les, is trading places with me, so I can
see Rebecca and Sam visit with his brother, LeRoy & family
and go to work.

God is good and his mercies endures forever.
Love in Him,
LesLie

Wednesday, July 2, 2003 1:46 PM CDT

Dear Ones,
Good afternoon. Joshua, being a little wiped out just because of everything he is going through is sleeping the day away. He was having pain again in the shoulder and left side. This morning they took a x-ray and nothing has change,as far as the fluid where the lower left lung lobe had been. Keep praying the fluid absorbs into his body.He received more platelets today, want to keep his gut (doctor's words) from bleeding. The platelets caused a little reaction a welt by the right eye so they gave him Benadryl I am sure that is also helping him sleep. He is on nine antibotics . They are looking to take him off one today. This is great news for it is one less hardship in his
kidneys. No news on jaundice,let you know when we know.
Have a great day in the Lord.
In His love,
LesLie

Tuesday, July 1, 2003 7:21 PM CDT

Dear Ones,
Joshua has been having a great day even though we just found out he has a staph infection. They are going to a stronger antibotic, it is harder on the kidneys than the previous ones so pray God's shield around his kidneys.
I believe our new resident doctor (they switch every
month) is not a Christian. For after she told us about the staph infection she said to keep our fingers crossed.I said,
"we don't do that we pray." She said,"whatever works for you." This is our mission field, pray we speak the truth in love.
In His love,
LesLie

Tuesday, July 1, 2003 11:36 AM CDT

Dear Ones,
Another beauiful morning in Tennessee, love that rain.
Joshua had a rough evening. He had an allergic reaction to the medicine Phenergan,which caused major twitching and severe pain to his arms and legs. The nurse did her best, but with all the medicines he was given she couldn't give any more so we had to wait it out. It was very hard to watch Joshua in pain for two and a half hours, but thank-you Lord for seeing us through.
Today, the doctors are checking for jaundice. Joshua is
also getting a four-pack of platlets (they help the blood clot)and a pint of blood. Joshua's white count is .4 (400)
The average person has 4000 to 11,000! The medical staff expects the counts to drop further, then climb up again, and then hopefully GO HOME:>
Les, Rebecca, and Sam are visiting so.. we are all
a family now.
Blessings to you all,
In His Love,
LesLie

Monday, June 30, 2003 11:25 PM CDT

Dear Ones,
This is for you late night readers.
Joshua, being in lots of pain, was given medicine to reduce the pain and sleep the day away. Too bad though for Pastor Travis and Joshua's friend Matthew, who came to visit and brighten up Joshua's day. Joshua woke up about 5:00 P.M. and the lung pain felt MUCH better. A typical side effect of chemo is nausea which Joshua gets a lot. Please pray it will go away. Thank you for your constant prayers for Joshua.
Sweet Dreams to you all,
God is Good
In Him,
Leslie

Monday, June 30, 2003 11:40 AM CDT

Dear Ones,
Good Morning. Joshua had an x-ray this morning which
showed fluid build-up where the lower left lobe of his
lung use to be.This is the cause of the side pain and the shoulder pain. If the pain continues or grows worse he will
have a cat scan done. The doctors will then decide if they need to put a tube in his side and drain the fluid.
Pray the fluid reabsorbs back into the body and no
surgery is required.
My thanks to all of Joshua's prayer warriors.
In Him,
LesLie

Monday, June 30, 2003 7:55 AM CDT

Dear Ones,
I am e-mailing two times a day to keep you all informed and I will write more if needed.
Joshua is still in pain the same as described in the last letter. The doctors have not been in yet so if I hear more I will write again.
This is the day that the Lord has made, I WILL rejoice and be glad in it.
In Him,
LesLie

Monday, June 30, 2003 0:05 AM CDT

Dear Ones,
After a great day we are finishing off with a painful night. Severe pain in his left shouldar and below the left
hipbone. There is also stomach pain. The doctors are starting him on some heavy duty pain reliever, Dilaudid. Joshua's white counts are nearing zero so they don't want any infection if possible and are putting him on antibiotics. We covet your prayers.
In Him,
Leslie

Sunday, June 29, 2003 10:12 PM CDT

Dear Ones,

What a fantastic day we had. Joshua has not had any severe pain. He ate some chicken, an egg, some orange juice
and a cereal bar. Les and Sam visited. Les took me out while
Sam and Joshua played Nerf basketball in his room. Joshua is
doing the complete opposite of the first diagnose. He is up
and doing fine, thank- you Lord. Joshua wants you all to know he weighs 113 with clothes not 112 as I previous said.
I tried to school with Joshua he just wasn't up to
learning about onomatopoeias (poetry in which word are used to make sounds) Well, Mrs. Mahand, I am trying.(she
is Joshua's english teacher.)
Thank- you for a beautiful day Lord,
In His love,
LesLie

Sunday, June 29, 2003 8:38 AM CDT

Dear Ones,
Good morning. Joshua is sleeping well. The low grade
fever is gone and the pain in the abdomen is down to a 3.
Many kinds of chemo cause feeling of nausea and tastbuds to
go awry. This one is no differnt, which causes Joshua to eat
less and less. Which in his case he can ill afford. Right
now he is 5'11" and under 112 lbs. with clothes. They
do have him on TPN, intervenous nutrition, and lipids, which
are fats. (Any one want to donate some fat for Joshua?
I am sure if there was a fat mobile like a blood mobile it
would be busy 24 hours a day.)
I believe it will be a wonderful day for
his mercies are new every morning.:>
In His Love,
LesLie

Saturday, June 28, 2003 10:23 PM CDT

Dear Ones,
Thank -you for your prayers. The x-rays showed the abdomen normal. Joshua woke up with a pain level at 4 (1-10)
much better than before. As of now He has a low grade fever 99.8. with feelings of nausea, so continue to lift him up in prayer. we are praying his neutrophils (part of his
white blood cells) come back quickly. Then he will able to go home for a while. Won't that be a teriffic day.
God is Good,
Leslie

Saturday, June 28, 2003 3:13 PM CDT

Dear Ones,
We are still in the process of finding more pictures and writing of the first hospital stay.
Since last night Joshua has had some stomach cramping,
enough where he takes some heavy duty narcotics for the
pain.Pray this pain will leave and Aspergillus, a fungus,
will not show up in Joshua's body. His eating had declined
to about two organic cereal bars and some meat each day. Joshua not getting enough calories was put on TPN and lipids (nutrition and fats.)
Joshua had plenty of visitors today. It is great to have
friends come up and say hi even though thay can't come in the room. Now we do the walkie talkie or cell phone con-versing. Thank - you for your prayers,

Les LesLie
Joshua
Rebecca and Sam

Tuesday, June 24, 2003 3:00 PM CDT

Dear Ones,
I never thought our family would have a web site, and I never thought I would have one for my son, Joshua, age 15 because of Leukemia (Acute Myelogenous Leukemia). Now, here we are taking a new path in life, not one of our choosing but resting in the fact that the Lord God is with us 100 percent of the way.

Here is our family's story: Thanksgiving Day Joshua showed us some hard lumps behind his ear. I thought they were bones for they were exactly behind each ear and he being so very thin 5' 10' 124lbs. The thought seemed plausible to me. The day after Thanksgiving as we all got ready for our annual shopping trip Joshua started to tease me about the lumps saying "Oh, Mom, what if I'm really sick. "Joshua , that is not something to tease about," I said.

The following week Joshua was having trouble standing while ushering at church, said his legs hurt. Later the following week he showed us his ankles swelling. We made an appointment at the bone and joint clinic. The swelling went down, so we cancelled the appointment. during this time, Joshua was sleeping more than his nine - ten hours a night with naps during the day. I just thought he was worn out from school. Two weeks before Christmas, Joshua showed us the bottoms of his feet which had various size bruises between the toes(size of a dime or smaller). We made an appointment with the foot doctor. The doctor noticed Joshua was flat footed and the second and third toe rubbed together as he walked which could create bruises. The doctor said he wasn't sure what all this was about, and let's just watch it. Thurs. Dec. l9th, Joshua said, "Mom the bruises are getting bigger- and the biggest one is numb". Well, I didn't like that, so... I made another foot doctor appointment. The doctor said he had never seen this and asked for the phone number of Joshua's pediatric doctor. The doctor came back saying you have an appointment at 1:30 with your pediatric doctor. We went home. I made us all fruit smoothies ( six days till Christmas and I still don't have my husband's Christmas vest done, oh, well) I gathered up my Christmas cards with our yearly letter and off we went to the doctor's office. I just finished putting the last stamp on the last envelope.(This letter said I could have sent last year's letter, for nothing really changed.) They called us into the doctor's office. He checked his tummy, circulation, looked at his feet, asked about any other bruises or nose bleeds. Joshua said he had been having nose bleeds for two weeks (Mom only knew about one of them.)

The doctor wanted to check his blood. While we waited for results , the boys and I worked on my sign langauge.( I always try to fill down time with some kind of learning.)

While we were laughing doing signing, the doctor called me out of the room and sat down and said,"I believe your son has leukemia". I was shocked and stunned to say the least. As fear and panic whipped through my body, my mind shut down. I am hearing the doctor tell me there are many new treatments out now and it is not as bad as it once was. Then he said I would like to tell your son. I went to the room where the boys were having a laughing good time and I called Joshua in. He told Joshua. I was standing behind him against the wall, I felt dizzy and buzzy in the head. I also felt disoriented. I couldn't sit, as there were no chairs, so I just ran out of the room (I thought it was better than falling down.) I ran outside and called Les (no answer at his work) Then I called Mr. Mike (godfather) and cried " they think Joshua has leukemia. " "They want me to drive him down to Vanderbilt now , I do not know where Vanderbilt is and I can't get a hold of Les ." He said he would meet me at Lifeway Christian Bookstore. I tried Les again and he answered, He cried out "Oh no", and said, " I'm coming right home." I called my mom and dad, then hung up and my pastor called me and prayed for me.

During this time Joshua didn't truly understand the seriousness of the disease and was looking at this as a new adventure.

We got home (I almost got in a car accident) The kids report cards just came in the mail. We hugged the kids for great report cards . Joshua and I packed, then we had a family prayer and group hug and we were off to meet Mr. Mike and go to Vanderbilt. Our pastor, youth pastor and their wives sat with Rebecca, Sam, Les and me while he had blood drawn ect.

We got in a room at 9:30 PM (six hours in the ER room) Les prayed blessings over Joshua as he always does each night. Half of our family left and I stayed with Joshua. I prayed over Joshua and as we listened to a cd, which main song is : By His Stripes We Are Healed (Isaiah 53) Joshua fell asleep at 12:15 AM holding Mom's hand through the railing of the bed bars. Thus started our new life.

Being a splintered family has not been easy for any of us. My husband and daughter dislike coming home to an empty house. Sam is not particularlly thrilled sleeping at friends alot of the time instead of being home. Joshua just wants to be home and go to church and school and be with friends. Mom wants to be there for her whole family and take care of them, for this is what she loves to do. We are all learning to walk closer with the Lord , trust in him and not our own understanding. FAITH, it is time for you to RISE up in us. May we grow in the Lord, and in time, use this experience to comfort others, in the way we have been comforted. Thank- you God for always being there for us. We Love You Lord..

We welcome you all to our web page. Please visit often. We covet your prayers for all of us. Love, Les, Leslie, Rebecca, Sam and our Champion Warrior Joshua.

Friday, June 13, 2003 2:44 PM CDT

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