History

Wednesday, September 26, 2012 8:04 AM CDT

Hello All,

Since I have written last, Joshua has been to the Cancer Survivor Clinic at Vanderbilt and the Marc Center for the Suboxone medicine. The Survivor’s Clinic is going to get us an appointment with an occupational therapist, to see what Joshua’s body is capable of doing work wise. Joshua must put the Suboxone under the left or right side of his tongue for six to ten minutes to have the medicine absorb. If the medicine is swallowed, it just gets filtered out by the kidneys and is not used by the body at all. He finds as with the methadone, when he is feeling ill, Suboxone does not work well.

These last two weeks Joshua has not been feeling well and has missed work each week. His intestines have been acting up and have been causing Joshua lots of pain and cramping. We had an appointment with a gastrointestinal doctor Monday the 24th. With Joshua’s past history of intestinal surgery, the fungus aspergillus and having had Crohn’s disease and not being scoped in seven years or so, the doctor decided it was time to take a look to make sure all is going smoothly internally. One directive the doctor made was for Joshua to drink a gallon of plain water a day!

Last week Joshua went for his yearly check-up at Vanderbilt. He had an electrocardiogram, PFT breathing tests and a heart echo, plus the usual tubes of blood work. The good news is his blood work is beautiful, numbers are great! The electrocardiogram was just fine also.

The heart echo however came back with some questions and needed to be looked at more closely. Right now they see the ventricles are not pumping/ squeezing as well as they should. He is being scheduled for an MRI so they can look at his heart more closely. Additionally unfortunately his breathing test came back low normal for the first time. Each year his breathing test scores have been inching downward. I told the doctor that Joshua did not feel well that day; hopefully that was the problem. Anyway, as a result, he has to retake the breathing test.

We were told prior to transplant that health problems may arise down the road concerning his heart, lungs and bones. I just thought the problems would be in his forties or so, not now; so soon. We continue to trust the Lord with Joshua's health. We all would love Joshua to be totally healthy today and move on. We still know however that God is in control and not surprised by any of this.

We ask for your prayers that these tests would come back normal and the scoping done this Friday, Sept the 28th would show us if there are any internal problems we should know about.

Trusting God on this journey,
The joy of the Lord is our strength! Neh. 8 :10
Love, Leslie

Sunday, July 15, 2012 2:28 PM CDT

Hi All,

Joshua has been having trouble with more pain. We had a little misunderstanding when a nurse practitioner at the office increased Joshua's dosage 1/4 strip daily. Unfortunately when I told Joshua, he thought I meant 1/4 strip each time he took the medicine, which meant he was taking a full extra strip each day! We corrected that in a hurry. :)

At Joshua's last clinic visit, he met with the original practitioner Billy, who discussed the mistake dosage with us. He also shared with us, that Joshua was not getting the pain relief he was supposed to be getting, because he was swallowing his saliva during the six minutes he had it under his tongue. when he swallowed, the medicine went from stomach to liver, where it detoxed the medicine and it was rendered useless. So Joshua is now taking 1 1/4 strip of medicine and not swallowing the medicine, so it can get directly into his bloodstream.

He is still feeling a higher level of pain, so he's going to call the clinic and see what else there is for him to do. Until then, we are taking it one day at time. We remind ourselves...six months to a year.

Thankful to our God,
Leslie

Monday, June 25, 2012 8:29 PM CDT

Hello All,

Joshua was able to go to work on Thursday the 14th, and has not missed any work since. He has done quite well overall and is not taking the Clonidine any more. The pain level is down to a 3 to 4 on most days, but he still has flares that make the pain a level 7.

When on methadone, before the Suboxone, the lowest pain level he had was a 4, but most the time he was hurting at a level 7 to 8. He realizes it is necessary to get a good night sleep to have less pain, but unfortunately sometimes it's just too difficult for him to get to sleep.

Joshua also finds that he is taking less naps. Before, he would usually come home for his lunch break and nap for about 50min, then after work he would come home and nap an 1-1/2 to 2 hours.

Another great thing is he is able to exercise more without hurting as much from the neuropathy. Over all, we are pretty happy with the new medicine, but find ourselves anxious for him to feel totally well. We keep reminding ourselves what the doctor has said, and that it would most likely take six months to a year to get there. We are none the less excited and happy with the blessing of this new medicine.

Thanking God for his mercy and grace.

Thank-you for your prayers,

Love, Leslie

Monday, June 11, 2012 7:58 PM CDT

HI All,

It has been such a long time since I wrote an update. The last journal was on March 27th, 2011. For those who have followed along with our family, Sam indeed did intern with Marsha Blackburn last summer. This year he is living in an apartment with Daniel Pugh in Chattanooga. This summer he's interning with the mayor of Chattanooga. He is happy to be learning about politics at the local level.

Joshua since the last journal entry has increased the dosage of the testosterone creme. As always we are thankful for insurance as this is a new creme on the market and very expensive.

And now for the really exciting news. As many of you know, I work in a nursing home styling the residents hair. One day I happened to be cutting a young man's hair who is a paraplegic. His name is Joshua and I told him I have a son named Joshua. This Joshua shared with me that he has neuropathy, to which I told him my son also has it. I deliberately did not mention he was taking methadone, (just did not want it to get around.) He told me he was at one time taking 120 milligrams of methadone ( which is more than I ever heard of anyone taking) and asked if my Joshua was taking it also for neuropathy pain. I told him he has been taking it for years and now recently his dosage was increased to 40 milligrams a day.

This young man proceeded to tell me he was now on a new medicine called Suboxone, and he felt so good that there are times he forgets to take his medicine.
I could not believe this, was it really true? Oh my goodness, what if my Joshua felt so well, that he would forget to take pain medicine, after almost ten years of 24 hour a day of constant pain.

I asked for the name/phone of his doctor. SO EXCITED was I.

On the way home from work, I just started to cry praising God and thinking about Joshua after all these years now able to go without pain.?! Les and I discussed it excitedly at home and shared with Joshua.

I called the doctor and he had no room for more patients. I found another doctor who works with Suboxone, whose office is actually closer to us and because Joshua had unusual circumstances for being on methadone, they said they would take him. (This medicine is often used for people getting off hard drugs or addicted to medicines as a result of going to pain clinics. Remarkably they are very busy. I had no idea so many people were fighting things like this.

We finally got our appointment and met with the doctor last Thursday the 7th. Prior to the meeting, Joshua had to gradually get off the methadone since these two meds do not mix. Because of this he was definitely HURTING.

The nurse practitioner explained the new medicine to us. Part of the explanation was it will take six months to a year for it to be fully working. The doctor asked Joshua how would it feel to not hurt at all, to which Joshua replied "I don't know, I don't remember how it feels not to hurt." :(

So besides this medicine, he is on three new ones and melatonin at night.
Hydrqxyzine at night Clonidine (a blood pressure med) for seven days and Bacloten.

Well this weekend was not good because the blood pressure medicine was too much. Joshua was so dizzy and still hurting a lot. It was difficult for him to go downstairs by himself, and was sleeping way too much. We talked to the nurse practitioner today and was told to cut the dose of Clonidine in half and cut the Suboxone strip in half, and now take it every four to six hours . He also said the pain is still there because the methadone is still in his body and working itself out.

Suboxone is a sub-lingual strip that is placed under the tongue and melts in about six or so minutes. Also once they figure out the dosage for Joshua in these next few weeks ( it is a very individualized medicine) he will never have to increase the dosage.

Joshua is not going to work while he struggles through this. but hopefully he can go in on Thursday.

I am writing these journals, to finish off this soon to be ten year journey on a wonderful note; Joshua being pain free. Join us as we travel with joy on hopefully our last leg of this journey.

Blessings and love to all,
Continual joy on this journey,

Leslie

Monday, June 11, 2012 12:34 AM CDT

Last week my brother Todd came down from frigid Wisconsin for a visit. Sam was home on Spring Break so it was a fun time. Along with lots of Wii playing (my brother loves it) we went to see Andrew Jackson's home. The spring flowers were coming out and we enjoyed them and the perfumed odors.

Les is coming home from Colorado tonight. He is doing a lot of traveling with Dave Ramsey
and his organization. He meets with the counselors of the surrounding area of the visit and reconnects with them. Les is their liasion, if they have any questions he is their man.

Sam is hoping to intern with Marsha Blackburn (Tenn. congresswoman) and is excited to learn from the internship.

Joshua has an upper respiratory infection now with a fever of 103.1. He wants to go to work on Tuesday. We shall see.
Joshua saw the endocrinologist this past week and his testosterone is still low so they are raising the dosage. When he gets well from the upper respiratory infection he will have an adrenal function test, since he is continually tired.
We also will start to go to the survivor's clinic they help with all sorts of things from health insurance to career choices.

Lots going on and as always lots to be thankful for.
Enjoy your day,
In Him,
Leslie

Monday, June 11, 2012 12:34 AM CDT

Joshua and I went to Sam's Dean's list ceremony. It was very relaxing and enjoyable. I met some of the other students in the Freshman Senate.. Sam is very comfortable at the college and it is home away from home for him.

Les just got back seeing his dad for his birthday. They enjoyed golfing and just being together.

Joshua is seeing the neurologist this Wednesday and getting blood work to see how the hormone creme is doing. I have been reading up on other ways to raise testosterone. Some ways are lifting weights and eating certains foods with L- arginine in them such as peanuts, eggs, almonds, and sunflower seeds.

The pain clinic is finally getting together with the neurologist to see if they can help Joshua in relieving the neuropathy pain. It now wakes him up at night and he must take meds to get back to sleep.
So, without God stepping in and healing Joshua I feel like this is our last hope for him. If you could pray for Joshua that the pain clininc could help him we would be grateful.

Tonight Rebecca and I watched eleven children nine and under. Actually one nine year old and the rest four and under! Whew.... when we left I felt as if I felt as if I had been to a live concert. My ears were ringing. Rebecca signed herself up for this for ten weeks and Matt and I will take turns helping out. The parents are having a marriage/ Bible study.

Sam is coming home this weekend to see his high school perform the school play. As always it will be fun to have him back in the nest again.

Will let you know when we know about the blood work and pain clinic.

Love, Leslie

Monday, June 11, 2012 12:34 AM CDT

I know it has been about two months since I have written. Sam has been home on three separate occasions. Thanksgiving, Christmas and Martin Luther King holiday. Sam has a 3.8 grade point average and made the Deans List. Though he was not impressed when he found out all one needs for that is a 3.2.
Sam is now working at the college campus bookstore and is enjoying it.

Joshua has been putting on the horomone creme for at least six weeks now. Personally I have not seen change and I let the doctor know that through e-mail. She said to give it a couple more weeks and we will have his blood tested and see what is going on.

I am working an extra day here and there at the nursing home. Sometimes I have a lot of perms and it squeezes out the shampoo and set times for my ladies.

Les is starting to train for the half -marthaon in April. Good for him. I will hand out water bottles. I did my running in high school.

Ordinary days are the best with the ones you love.
Blessings on you and yours,
Love, Leslie

Monday, June 11, 2012 12:34 AM CDT

The clinic went smooth enough on the 16th. Today I received the information that the new blood work results showed Joshua in the very low levels of normal for his testosterone and thyroid levels. The doctor is increasing the synthroid for the thyroid to 125mcg which is an increase of 25mcg. She is also starting Joshua on 5% testosterone creme. The doctor said we should see an improvement in about one month in his energy level. Yea!
Joshua has to rub the testosterone creme on his chest daily. If, for some unforeseen reason, he can't do it and I have to, I must remember to wear gloves so I don't get the testosterone on me and into my bloodstream. That would be one way for me to grow a beard!

Sam was home for Thanksgiving. As always we enjoyed his company. He does make me smile. :)
Sam is doing well in the grade department, and it looks like he will be bringing home A's and B's.
Rebecca and Matt visited his parents for Thanksgiving and enjoyed their time with them as always.

Joshua continues to work at the E-Bay store which is about 27 hours a week. He still is looking for a full-time job.

Last week I worked three days at the nursing home (I am their beautician) and at night cooked up a storm for the 16 of us who were at our home for Thanksgiving. I had Les peeling potatoes in addition to carving 2 turkeys and a ham. Sam peeled apples for pies, washed sweet potatoes, and forked them so they would not explode on us. Joshua set the tables and was in charge of music and candles. We got things done as a team which was great for all of us.

God bless you all as we start this Advent season.
Love,
Leslie

Monday, June 11, 2012 12:33 AM CDT

I am home putting up Les's and my bedroom Christmas tree. I know it is early but these days seem to be wizzing by, and I do enjoy looking at our tree even if it is a tad early.
Joshua has not heard anything from Embassy. He even wrote a thank-you note for the interview. I know God has other plans for him, but it does get wearisome for him and us. We are thankful that he has hours even if they are part-time hours at the E-bay store.
We have been in contact with a pain clinic for Joshua. He has been hurting more and taking more methadone. We have got to get a handle on this pain. I am cautiously excited about the pain clinic. "Cautiously?" you may ask. Well, our hopes have been dashed too many times on the other roads we have traveled to help Joshua and this pain. The credientals of this doctor look impressive to me, but we will see....
Sam will be at our state capital this coming weekend with 12 other students representing his college at the Tennessee Intercollegiate State Legislature. He will be working in the capitol as a student state representative learning the ropes of passing bills and the like. We are hoping to see him for a meal during a break time of his. Today, Sam received the opportunity to work at the Freshman Senate/SGA (student government association) table and answer questions about the programs to prospective freshmen who were visiting the campus today. He told me it was fun being on the other side of the college visiting experience.

Joshua's endocrinologist appointment is Tuesday. I am praying they can get his hormones where they should be so he is not so tired..

God is good,
Leslie

Monday, June 11, 2012 12:33 AM CDT

Joshua's bloodwork came back, and we need to see a endocrinologist pronto. Joshua's thyroid numbers are not good, and his testosterone levels have dropped to an alarming low. The doctors are not suprised at the drop of the testosterone levels for it is common for those who have had radiation to get this problem. I thought to myself, "But it is seven years out." I see why we go in for the yearly check-ups as there are a variety of things that can go wrong as time progresses. We just need to pray these other things just don't happen to Joshua. Now, the good thing is, these problems most likely are the reasons Joshua has had many problems with sleep, or lack thereof, and continual exhaustion. Invertently, it looks like we might have found a 'cure' for these problems. His appointment for the endocrinologist is November the 16th.

Sam was home on fall break from college. As always it is SO good to see him. My parents were here to round out the festivities. We even played a family favorite: the card game 31. Sam's first two hands held a 31 when it was time to show our cards. Needless to say, he won and was pleased as punch about it.

Be blest and loved,
Leslie

Monday, June 11, 2012 12:33 AM CDT

Welcome to the Nienow Family Blog. This feels so strange to me to be on blogspot and not
Caringbridge. I am sure like anything else it will feel normal in no time.

Joshua had his anniversary check-up this past Tuesday. It has been seven years since his bone marrow transplant This check-up included an echo which is an ultrasound for the heart, breathing tests to see how well the lungs are working and many tubes of blood drawn. I don't know about the bloodwork but he did well on the echo and breathing tests. The only thing that we need to work on is his weight. Joshua weighed in at 132.4 and at 6ft. 1 in. that is thin to say the least. Ritalin among other things work against his appetite.

I will post more about family life but I just wanted to get this started.
Have a good night. May God bless you.
Leslie

Monday, June 11, 2012 12:30 AM CDT

Monday, June 11, 2012 12:29 AM CDT

Monday, June 11, 2012 12:28 AM CDT

Monday, June 11, 2012 12:27 AM CDT

Hi All,

Joshua and I went to Sam's Dean's list ceremony. It was very relaxing and enjoyable. I met some of the other students in the Freshman Senate.. Sam is very comfortable at the college and it is home away from home for him.

Les just got back seeing his dad for his birthday. They enjoyed golfing and just being together.

Joshua is seeing the neurologist this Wednesday and getting blood work to see how the hormone creme is doing. I have been reading up on other ways to raise testosterone. Some ways are lifting weights and eating certains foods with L- arginine in them such as peanuts, eggs, almonds, and sunflower seeds.

The pain clinic is finally getting together with the neurologist to see if they can help Joshua in relieving the neuropathy pain. It now wakes him up at night and he must take meds to get back to sleep.
So, without God stepping in and healing Joshua I feel like this is our last hope for him. If you could pray for Joshua that the pain clininc could help him we would be grateful.

Tonight Rebecca and I watched eleven children nine and under. Actually one nine year old and the rest four and under! Whew.... when we left I felt as if I felt as if I had been to a live concert. My ears were ringing. Rebecca signed herself up for this for ten weeks and Matt and I will take turns helping out. The parents are having a marriage/ Bible study.

Sam is coming home this weekend to see his high school perform the school play. As always it will be fun to have him back in the nest again.

Will let you know when we know about the blood work and pain clinic.

Love, Leslie

Monday, June 11, 2012 12:27 AM CDT

Hi All,

Last week my brother Todd came down from frigid Wisconsin for a visit. Sam was home on Spring Break so it was a fun time. Along with lots of Wii playing (my brother loves it) we went to see Andrew Jackson's home. The spring flowers were coming out and we enjoyed them and the perfumed odors.

Les is coming home from Colorado tonight. He is doing a lot of traveling with Dave Ramsey
and his organization. He meets with the counselors of the surrounding area of the visit and reconnects with them. Les is their liasion, if they have any questions he is their man.

Sam is hoping to intern with Marsha Blackburn (Tenn. congresswoman) and is excited to learn from the internship.

Joshua has an upper respiratory infection now with a fever of 103.1. He wants to go to work on Tuesday. We shall see.
Joshua saw the endocrinologist this past week and his testosterone is still low so they are raising the dosage. When he gets well from the upper respiratory infection he will have an adrenal function test, since he is continually tired.
We also will start to go to the survivor's clinic they help with all sorts of things from health insurance to career choices.

Lots going on and as always lots to be thankful for.
Enjoy your day,
In Him,
Leslie

Thursday, October 21, 2010 5:50 PM CDT

Hello All,

I finally did it. The move to blogspot is complete. To get to our page type in

nienowfamilylife.blogspot.com

See you there,
Love, Leslie

Thursday, October 7, 2010 8:00 PM CDT

Hi All,

I have tried twice to get the blog started the last time the computer said server error. I will try tomorrow.

Joshua is working a little more at his place of employment. Bed,Bath and Beyond doesen't seem to need Joshua at the moment. This past Monday he went to about 20 places to find out how to apply at their business, either on line or hard copy. Circuit City is looking the most interesting to Joshua. He likes to tinker with electronics.

Joshua has been sick this past month and it seems to hit him on the weekends. Which I guess is 'good' in at least he can go to work.

Well, hopefully tomorrow I can get the blog started.

God bless and enjoy your night.

Leslie

Thursday, September 2, 2010 9:35 PM CDT

Hi All,
I will be starting the blog soon.... in the meantime Joshua's blood work for vitamin B6 and B12 came back normal. I would have been happy if that was the problem, it would have been an easy fix for the neuropathy. It was a shot in the dark, hope against hope ... Oh well...

Joshua has been putting in job applications so far no one has hired him. Joshua did tell me Bed Bath and Beyond looked interested. Would you join us in prayer for this for he really wants to move on.

Joshua just got over a head cold. Yea..

God bless,
Love, Leslie

Wednesday, August 25, 2010 8:18 PM CDT

Hi All,

We had a clinic appointment with Dr. Donofrio, the neuropathy doctor, today. Lately, Joshua has been doing better. He is back down to 30 mg of methadone rather than the 40mg of last month. Dr. Donofrio said sometimes those with neuropathy just have bad weeks. I am glad it was not permanent.

Joshua is also sleeping better. There have been times when he has laid in bed for hours with sleep eluding him.

Joshua had a blood draw today to see if he is deficent in vitamin B12 and/or B6. Both would cause neuropathy. It is a long shot, the doctor said, but worth a check. The reason he doesn't believe there is a defiency is because the neuropathy started after the chemo in February of 2003.

I asked Dr. Donofrio if he thinks Joshua would ever be healed of neuropathy. He said he hopes Joshua will be though he had hoped Joshua would have been healed by now.
As always, this is in God's healing hands.

Joshua and I visited the Children's hospital. We were able to see two of Joshua's wonderful nurses: Yo and Deanna. We also saw Laura, who helps the nurses (CNT). She remembers my always cleaning Joshua's room. She had never seen a mom clean as I did.

Dr. Frangoul and his nurse Becky came through the door of the cancer ward floor. We were happy to see everyone, and it was fun to catch up with everyone.

Joshua is thinking about volunteering at the hospital. It would be for two hours a week. He would like to work with the cancer-ridden children. I am glad he wants to give back. He also loves kids which is a plus.

Continuing on the journey with joy,
Love, Leslie

Thursday, July 29, 2010 11:01 PM CDT

Hi All,

Well, here it is almost August, another summer slipping away.
Joshua has added all the foods back to his diet except cow milk products. He still does not get the cramping in the stomach while eating, so that is good. He does eat sugary foods though; that has to be changed. I think he does better without the sugar.

Neuropathy has not abated. In fact, it has grown worse these last two weeks. Joshua now takes 40 mg of methadone on the days when it hurts the most. This is not good. Therefore, his neurologist, Dr. Donofrio, may send Joshua to a pain management clinic sometime in the future.

I have signed him up for getting a massage once a month, and I am hoping he will give acupuncture a try. Joshua is just not interested in getting more needles in him with the acupuncture. Both of these have helped others with neuropathy, so I want Joshua to give them both a try. I have found a diet for those with neuropathy. I will work on that when Sam is off to higher learning at Chattanooga.

Joshua is doing some exercise, but it should only be light and not tire him out because that affects neuropathy. He is lifting the bar with no weights and finds it is adequate for now.

We will be switching to a blog in September and saying farewell to Caringbridge.
Be blest, Love, Leslie

Tuesday, June 1, 2010 6:13 PM CDT

Hi All,

Joshua had an appointment with Dr. Aballay, his wellness doctor three weeks ago. The doctor was very pleased with his progress. He told Joshua he can now add more variety to his diet and see how he feels after eating the new additions. Joshua has done well with gluten, chocolate, and soy. He is now eating my homemade wheat bread and seems to do well with wheat also.

Last week Joshua went to his regular doctor-- Dr. Nimmagadda.
Dr. Nimmagadda is not sure about this wellness diet and the medical food, a powder supplement. He agrees a person is what they eat, but to a point. He asked Joshua how he was doing on this diet. Joshua told him he is now working four eight hour days a week up from the two four hour days. Joshua told him how his stomach doesn’t cramp anymore and he has much more energy now-- so much more that after working eight hours one day, he cut the neighbors grass, which is a forty minute project. Joshua came in the house and told us that he was tired. I told Joshua that was great for it is a normal tiredness. Anyone who worked for eight hours and cut his neighbor’s grass had a right to be tired.
Joshua continued to tell the doctor how well he was feeling . The doctor just shook his head and logged it all in his computer.
When Joshua was finished talking , Dr. Nimmagadda told Joshua his blood work came back all was fine except his TSH for his thyroid.
A good number is under 4, Joshua’s TSH was 14! He said he was surprised Joshua was walking around much less feeling as well as he was feeling. With that high of a number he should be very tired. He could not believe it. It shows us once again diet must be very important.
The doctor increased Joshua’s dosage of Synthroid medicine from 88mg to 100mg. and another blood test will be ordered in six weeks.
I am happy, and we are blest that this diet is working for Joshua.
The neuropathy pain has not lessened. We are going to try a cream for his legs which may help. We will let you know.

God bless and we are thankful we can enjoy this part of the journey,
Love,
Leslie

Sunday, May 2, 2010 2:05 PM CDT

Hi All,

I have been very busy with Sam and his end of year activities. I was in charge of the class rummage sale last week. This week was the school play, Comedy of Errors, where I helped with the hair and make-up. I was able to do old age makeup and bruises on some of the students.

Joshua and I both noticed Joshua was a little more tired this week, and I attribute it to lack of cooking on my part.

Joshua was still eating the right foods but was lacking on veggies which I steam. Looks like I will be teaching him this, so he does not have to rely on me. One more thing to get him ready to live on his own....

We saw the wellness doctor this last Monday. He was pleased with the outward difference with Joshua. The last time he saw Joshua was in November. He could tell Joshua was more alert, and Joshua's talking was not as slurry as it was in November.

Joshua is now still having his medical food (nutrient powder to mix with water) but has been able to cut it to once daily rather than twice daily.

Today, I have decided to see if Joshua is allergic to gluten, so I made my homemade bread with wheat free flour but added gluten. I actually doubled the gluten. I will let you know how it goes.

Joshua will eat the bread and write down immediately how he feels and also write down how he feels a couple of hours later. He will do this for two days with the bread, two days without, and another two days with the bread.

Exciting days ahead....

Thank-you God for direction.
Be blest all,
Love, Leslie

Sunday, April 18, 2010 12:47 AM CDT

Hello All,

Well it has been a good month since Joshua's new dietary habits. He has adjusted quite well and I am happy for that.

His favorite food and drink are goat's cheese and goat's milk. He is sure he has allergy problems with cow's milk products because he feels so good after the goat products. I would not be suprised because as an infant, when he was almost done nursing, we tried the regular formula, and he got big welts from it. It was soymilk for him after that till his first birthday.

Three weeks ago he got up at 8:00 a.m., worked till
6:00 p.m., stayed up till 10:00, and did all of this without a nap and with one less ritalin. Red letter day for Joshua!

The family agrees Joshua is much more alert and aware. When he comes home from work he usually is still energetic.
Instead of staying home on Friday nights because he is tired, he now consistantly goes to his youth group at church.
Matt, Rebecca's husband, dropped by the house last week and was in shock to see Joshua up at 8:00 a.m., fixing his breakfast, and cheerful to boot. He told me he really sees an improvement in Joshua.

This is all good and it is wonderful for us to see that eating well and getting rid of the junk food really helps a person's health.

We will be seeing the doctor in the next couple of weeks and see what the next course of action is.

Being Blest,
Love Leslie

Monday, March 15, 2010 3:07 PM CDT

Hi All,

We are now into our third week of this new diet regime.

After a rocky start of miscomunications, e-mailing the doctor, Joshua's eating the wrong foods or I serving him the wrong foods, we finally got into the groove of things. Along with all of the early problems, I drove to the doctor's office to show him the foods Joshua was eating, hoping he would o.k. them.

Last week we did well. Joshua has done some good eating. He has to eat as clean as possible, so we buy organic as much as we can. Yesterday, just for supper mind you, he enjoyed his goat's milk, goat's cheese, chicken, fresh green beans, and organic new red baby potatoes in canola oil. He also ate rice bread with no sugar added fruit spreads that I found at Whole Foods.

Joshua's schedule:

Alpha Lipoc Acid one half hour before breakfast.

breakfast-

hydrocortisone 2 pills

All of this along with his regular prescribed pills as I note further down the page he takes morning and night.

Dhea 25 mg. 1 pill
vitamin/mineral 1 pill
vitamin D3 2000 mg
omega 3 2000mg
cat's claw 350 mg

The powder medinine food called Ultra InFlamX (to heal the 'gut')

lunch

hydrocortisone 1 pill

snack

supper

UltraInFlamX 2 scoops with 8 oz of water

night time pills same as the morning minus the Dhea.

liquid idodine that we put in a veggie capsule.

liquid minerals that we put in a veggie capsule since he drinks distilled water.

Joshua still takes Lyrcia and Lamotrigine 2x a day. He also takes
methadone 3x a day ritalin 2x a day, synthroid at night, and Polyethylene Glycol for the restroom issues if needed now:)

Joshua cannot have any white or brown sugar, high fructose corn syrup (which is in almost everything), and honey. Thankfully, Joshua is getting used to this whole schedule of do's and dont's.

He also cannot have eggs, wheat products, beef, chicken, dairy, creamed veggies, corn in any form, peanuts, grapefruit, or oranges.

It has been some doing to get a variety of foods available that he will enjoy.

Already we are seeing signs of improvement. Joshua says he feels he has more energy, and he has not needed the Polyethylene Glycol for bathroom needs. Amazingly, he has gone five days without it. Usually he needs it every other day.

It is time consuming and does cost good money. All is worth it if it helps Joshua.

Joy on the journey,
God Bless you all,
Love, Leslie

Sunday, February 21, 2010 9:59 PM CST

Hi All,

We had a busy week. We got home Monday afternoon from a college visit with Sam for a honors class at Chattanooga.
Wednesday, I went to the dentist because one of my crowns broke off. I was glad to have that fixed. I then used the rest of the afternoon to prepare dinner for the family and Mike Pfieffer. We had a wonderful visit. Thursday and Friday I worked. Saturday, I had the flu. Sunday, I felt much better. Sorry to say Les and Joshua got the flu.
So I will try for this week to get Joshua started on the new 'diet'.

Joy on this journey,
Love, Leslie

Saturday, February 13, 2010 10:29 AM CST

Hi All,

The strep throat has gone, Yea! Now Joshua has contact dermatitis around the eye that had pink eye.
It started out with redness and little red bumps around the eye for two days then on the third day, this past Monday it puffed up. It looked horrible. I just could not believe we were making another trip to the doctor.

The doctor at the walk in clinic said cortisone creme should fix it in a week or two. She aliked it to poison ivy.

This Tuesday is the day we start the new food and pill
regime.

God's blessings,
Love, Leslie

Friday, January 29, 2010 2:10 PM CST

Hi All,

Joshua has continued to feel sick, and the glands in his throat are enlarged. This morning, he woke up with a fever of 101.7 and achy. While he was lying down, his neck looked so large it scared me. When he sat up, it looked much better.

A trip to Vanderbilt's walk-in-clinic right down the street showed us his white count to be 13,200. I believe the normal count is 4000-8000. They did not see anything on the swab for the throat culture, but they are calling this strep because of his white count and achey, feverish body.
Being a bacterial infection, they can use amoxicillian.

On the road to health ...

Bless you and joy on this journey,
Love,
Leslie

Sunday, January 24, 2010 1:47 PM CST

Hi All,

Thanks Sue and Sisse for being cheerleaders along with the rest of you who continue to check on Joshua's page.
My parents have blessed me with a gift of getting a massage to destress me which I am using this Tuesday.

This is the week we started no sweets. No gummies, candies or high sugar drinks. Joshua did well. I did loosen up and let him have ice cream twice for he started a sore throat.
This week was a "sick' week for Joshua. He got 'pink eye' had a sore throat and lots of debilating pain with the neuropathy. He is sleeping so much or rather it seems like it cause he has difficulty sleeping at early night (10:00 12:00) then wakes up during the night. He sleeps till 12:00 P.M. I had to drag him out of bed today, he is just hurting and he went to the couch. I wonder if he is feeling the pain more because of eating less sugar. I had read people with a lot of pain eat more sugar to help 'numb' the pain or stay on a sugar high.

Dr. Aballay said he would have Joshua's supplements vitamins etc. on January 25th. I hope so, we are ready to get started.

I am doing well despite our little setback this week. I thank you all for your continued prayers.

Yes, the Joy of the Lord is my (our) strength.

Love, Leslie

Tuesday, January 12, 2010 7:56 PM CST

Hi All,

We have placed an order for Joshua's vitamins etc.
I have learned when purchasing vitamins one needs to look for the GMP label on it. This label is the Good Manufacturing Practice seal of approval.

Joshua will be taking short termed hydrocortisone to lower his body's inflammation. A strong probiotic which is for those who have Crohn's. He does not have Crohn's but I want the strongest probiotic I can get for him. It is a script so it should be good for him and his problems with digestion.

Along with those products he will be taking, DHEA, multi-vitamins, fish oil, cat's claw which is good for the immune system ,alpha lipoc acid, which is good for diabetic neuropathy and liquid iodine good for the thyroid and adrenal glands. Joshua had problems with both the thyroid and adrenals.

He is switching to goat's milk since he can't mix some regular milk with the almond milk. Joshua does not like almond milk 'straight' as I earlier thought.

I found gluten and wheat free bread,crackers. Pancake mix which I will use at later date. Joshua is eating mixed berries in the morning and salads at night. Working on chewing 30 times per bite. we all do it with him so it is a family thing. Though, sometimes one can only chew so much.

This is some what stressful for me finding all the correct foods. I have to figure out for him the best times to take the vitamins, fish oil and the rest of the products. Since Joshua's short term memory is short and at times lacking I will need to check-up on him and remind him of things. I am thinking of having a check list for Joshua and that should help me for when I am not with him. Keep me in your prayers that I won't slow down on this leg of the journey or get cranky with it.

Joshua and we know he is still a child in so many ways and we keep reminding him as he reminds himself he is 22.
It has been a journey and continues to be a journey in many different areas of life.

God is on His throne and I am happy about that.
Love, Leslie

Wednesday, December 16, 2009 1:34 PM CST

Hi All,

I have a lot to wade though for Joshua
Here are some of the recommendations for Joshua so you can get a feel for what we will be doing.

Belly breathing
Exercising least 20 minutes 3-4 times a week - not a slow walk- get the heart rate up.

Diet
Avoid process/ refined foods
Avoid caffeine including coffee and tea
Avoid anything artificial
Chew least 30 times to aid in digestion- take time in eating
Avoid iced drinks with meals. Best to drink liquid 30 minutes after meal. If need a drink keep it warm.
Follow the anti-inflammatory- avoid gluten and dairy for at least one month.
Half your weight in water use reverse osmosis filtered or distilled water. Use Concentrated Trace Minerals.

There are supplements to take and books to read about Adrenal Fatigue.

We have started with some slow changes and will hit it hard in January. He is drinking the almond milk and eating the gluten free cereal. Joshua has also started to drink more water and eating less sugar. He really has become addicted to simple carbs and this will be a God miracle to get him off them. I have read those with continuous body pain eat a lot of sugar to relieve the pain. If you haven’t thought of it before sugar can be used as a ‘drug’. Joshua is living proof of that.
Our prayer is that he can make the switch to the healthier eating/exercise/drinking and be better for it all the way around.
Thanks for keeping up on Joshua,
Excited about this leg of the journey,
Love, Leslie

Wednesday, December 2, 2009 8:42 PM CST

Hi All,

I will write more detailed soon. Joshua's tests in a nutshell came up with him having adrenal fatigue. Because Joshua is young, the doctor has high hopes of Joshua doing well. The doctor said it will take about two years for Joshua to feel really well. Our doctor had no promises because of what Joshua had gone through. He also had never worked with anyone with a blood transplant and had no idea what that plays into Joshua getting better.
I am down loading all the paper work in the next couple of days from Dr. Aballay and then I will put it up for you all to see and pray about.

Anxious to get going on this new leg of the journey.

Be blessed,
Love, Leslie

Saturday, November 21, 2009 12:07 AM CST

Hi All,
This Monday Joshua is finally going to the wellness doctor. This past week Joshua was having a hard time with getting pain to go away. The methadone was not working like it was suppose to. Having continual pain caused him to have a hard time to fall asleep. He has had some intestinal problems with cramping.

We have two more days of temperature reading and then we will be done with the all the tests. Yeah! I am so tired of testing and everything that goes along with it.

Looking forward to what God has next for Joshua.

Prayer request from Joshua is for his legs, they hurt a lot.

Love, Leslie

Wednesday, October 21, 2009 3:02 PM CDT

Hi All,

As we write Joshua is doing the saliva test. Let’s hope we can do the testing without a hitch.

The testing is done in four intervals during the day. No eating or drinking(except water) prior to one hour in taking the test.

Joshua had his six year check-up at Vanderbilt. The heart echo, chest x-ray, thyroid function, kidney function all normal. The only slightly abnormal but not changed since last year was the pulmonary function (breathing) We thank God for a good report.

Joshua has put in an application for working at Toys R Us. He had his interview Sunday afternoon. The woman showed Joshua the stack of applications she had. We will see what happens. Joshua did write the woman a thank-you note for taking time to interview Joshua. Hopefully, that will keep Joshua’s name in the front .

God bless you all,

Love,
Leslie

Wednesday, October 7, 2009 6:16 PM CDT

Hi All,

Today is the 6th anniversary for Joshua’s transplant. We continue to thank God for Joshua’s life and are looking forward to Joshua’s full recovery.

I still can’t believe that it has been so long since my transplant. Everything that happened during that time, still feels like yesterday. Even though I’m still dealing with effects from that time, I know I have improved so much. For the rest of the year I know that exciting things are about to happen. I can’t explain yet, but I hope to post it soon. Thank-you so much for all your constant prayers throughout the years. It has been a long journey and I know we are nearing the next part in this journey.
Love you all,
Joshua
We have had a couple of mishaps with the testing so.. We are not nearly done with them. Hopefully, in the next week we will complete them.

Enjoying the blessings of the day,

Love, Leslie

Wednesday, September 16, 2009 4:26 PM CDT

Hi All,

We have had a slow start with all these tests. Joshua was sick last week which caused him to miss both days of work. He was in bed more than usual, coughing, hacking, and feeling like he was getting a fever. The fever did not transpire, and he felt much better by yesterday (the 15th). That was great because he could go to work.

I will start these tests this weekend. They are detailed enough for me that I feel like we are back at the hospital learning how to do all Joshua’s meds again. I just do not want to mess up and have to do them over again.

For now we are on the upswing. Yea…

Be Blessed,
Love,
Leslie

Sunday, August 30, 2009 9:14 PM CDT

Hi All,

We went to Wisconsin early in August for a family vacation and then five days later we had Sam’s school camp for a week. It was my last year running the kitchen crew and doing all the food ordering. I enjoyed it, but it is time to move on.

Joshua has seen Dr. Aballay, the holistic doctor, twice. The first visit was just to get a feel for Joshua and run through his medical history. He had Joshua’s medical papers from the date of transplant to present. Just with that information he said Joshua’s medical story would make an interesting book because of all of the things he has come through.

I have asked Vanderbilt to send the medical records for the period prior to transplant and I have called Joshua’s Crohns doctor in Columbia and asked them to send the medical records to Dr. Aballay. This way Dr. Aballay will have the full information on Joshua which should help in his decision making as to treatment.

The second visit was Friday August the 28th. We met with Dr. Aballay and picked up the blood work papers, two 24-hour urine specimen collection containers, four saliva tests, and a basal thermometer. We will meet with him the end of September for results of all the tests and then Joshua should be on his way to a healthier life.

Dr. Aballay told us he does not take any credit for Joshua’s healing. When it happens, he said it is God and Joshua’s natural healing process. I like that.

Be blest,
His joy on the journey,
Love, Leslie

Tuesday, July 7, 2009 9:40 AM CDT

Hi All,

Joshua had another hard night this past Thursday.
At 8:30 p.m. he took 10 milligrams of methadone
10:30 he went to bed
11:30 2 Advil 400mg
Still lying in bed hurting a lot and crying
2:45 a.m. 10 mg of amitriptyline with 400mg Advil
3:30 a.m. 10mg of amitriptyline
4:00 1 pill of Bendryl help him sleep (did not work)
6:00-7:00 still enough pain to keep him awake

As you can see he was in no shape to go to work. This past week he missed the only two days he works, not good as far as I am concerned. I am giving you this information so you can see how badly he can hurt.

We are hoping and praying that a holistic approach to alleviate suffering is the way God will work healing through Joshua's body. We look forward to following the doctors advice on nutrition and that having nutritional supplements and whatever else he recommends-will result in many nights of good restoration sleep for Joshua.

I pray all is well with you,

Love, Leslie

Tuesday, June 30, 2009 10:13 AM CDT

Hello All,

Joshua's doctor visits went fine. His thyroid medicine will remain at the same dosage, even though he has lots of hair on his pillow. Supposely is a sign of a worsening thyroid.

Dr. Frangoul was not happy that Joshua was still on a lot of medicine. He said that should not be since he is so far out of transplant. The 6th anniversay coming up early October. I reminded him the medicine is because of the neuropathy not because of cancer. I told him the neuropathy doctor has told us he has done all he can.

We are now on once- a- year visits to the clinic. Dr. Frangoul want us to have Dr. Donofrio, neuropathy doctor, take over the writing out of the ritalin prescription. This makes Joshua somewhat sad because he enjoys coming in once a month to get the script because he can see the doctors and nurses who have become so familiar to him and were such a big part of his life for years. Strange as this may seem to a 'normal' person, Joshua has spent so much of his life there and it is familiar and comfortable to him. I have felt that way too, but am getting over it. He will too, in his own time I am sure.

I have found a holistic doctor in Franklin for Joshua. A holistic doctor treats body, mind, and spirit. He believes that given the right circumstances, the body will get better on its own. He will be doing blood work and saliva testing to see what nutrients Joshua is missing and we will go from there. That is, normal food plus dietary supplements will be planned out/prescribed to help Joshua regain normal health.

Science seems to have done all it can for Joshua and he still is in pain. Yesterday and today the neuropathy has been very hard on him. He was up till three in the morning with intestional problems and neuropathy pain. Today he is not going to work.

So much for the pills he has to lessen the pain to a comfortalbe level. I believe that giving this a try is an excellent step in the right direction.

The Activia yogurt worked for one day with him. He was very suprised he did not have to take any medicine that day for his intestional problems. He still takes the yogurt but not on a daily basis as before.

We pray that this whole regimen will be a turn in the road leading to a normal life for Joshua.

God bless and love,

Leslie

Saturday, May 30, 2009 10:38 AM CDT

Hi All,

Joshua is golfing today with his dad. It is a
wonderful spring day here in Tennessee. The sun is shining beautifully which is a welcome change from the many cloudy and rainy days we have been having lately.

Yesterday was a 'bad' day for Joshua on all accounts from lack of sleep to stomach problems and neuropathy problems. I am happy he is feeling good enough to golf. He had to try a couple of swings at home to see how he felt before he told Les he felt he could go.

I am having Joshua eat the Activia yogurt to see if that helps with his intestinal problems. We know many of his medicines such as methadone slow down his intestines.
I am sure hoping and praying this will be a valuable aid for him.

Joshua is going to see if he can work again at Golf Galaxy again. They are starting to get busy, hopefully they say, "Come back to work,Joshua." He is also going to check with Publix a food store.

We go to see the thyroid doctor and Dr. Frangoul in June. I will let you all know the report then.

God Bless,
Love,
Leslie

Tuesday, April 28, 2009 8:35 PM CDT

Hi All,

Today,we buried Mrs. Bessie,age 80 a long time friend/ surrogate mother/grandmother. She was a long-time prayer warrior for Joshua. Joshua went to New Life Church to visit and see her among other people some weeks ago and he was sure glad he had seen her then. Her sister, Mrs. Bertha, said Mrs. Bessie had talked about that visit for many days.
Joshua along with Les felt blest to be asked to carry the casket along with six other men. At the gravesite the pall bearers took off their boutonnieres and placed them on the casket.

We are happy she is with the Lord and not lingering in a nursing home.

Joshua continues to meet with his career coach by phone once a week and is learning a lot about himself and what type of job will fit his skills.

The neuropathy is still a real pain for Joshua. The changing of medicines and dose amount does not help. The doctor pretty much said he has done about all he can do except increase the methadone which neither Joshua or Dr. Donofrio want. Joshua and I are keeping a diary of each day so if we need it for the disability we will have it.

When Joshua is doing good he does what he can and enjoys life. I am glad for those times.

God's blessings on you all,
Love, Leslie

Tuesday, March 31, 2009 12:23 AM CDT

Hello All,

Joshua has had an o.k. month all in all. He has been able to finish the classes of learning swing dancing. He enjoyed them very much though his legs were hurting by the end of the session. He learn the waltz and various other dances. I was his 'practice girl' at home during the week. He enjoyed meeting more people from the churchdudring the dance lessons.
The last class they were able to dress up. It was formated as a regular dance with some great food to boot.
There have been a couple of missed days of work this month due to neuropathy. Today is one of those days. I am waiting for a call back from our doctor. Joshua had a rough night getting to sleep. He got up to go to work but the pain was so intense that he called in sick. He told me it felt like his nerves were being pinched all overand the worse pain was in the legs.

I am going to ask his neuropathy doctor about Joshua's chances at disability from the government. We really do not want to go this way, but, with his unability to work a normal job at this time, (he works about 8 hours a week) we are not sure what is to follow down the road for Joshua. Also with Les's health insurance being with G.M. we have not the slighest idea what this means for coverage for Joshua.

Joshua is still working with the job coach and enjoying the interaction. My mom also gave us some web sights for jobs for people with diaabilities. We shall see what happens. We know as with anything our God is still in control and nothing suprises him.

Continuing on this journey and hanging on to the Lord's joy.
Love, Leslie

Monday, March 2, 2009 1:44 PM CST

Hi All,

Joshua was hurting so much with the neuropathy and not being able to sleep the last week and one-half that I jumped at the chance for Joshua to see the doctor when they called and said there was a cancellation.
Dr. Donofrio,his neurologist,decided to move some of Joshua's medicines to earlier in the day. He is hoping that this would help some with the sleeping. The doctor also gave Joshua a perscription for Nortriptaline to help him sleep at night. He is still deciding if he want to take that yet. He has had it before,he is just thinking if he wants to take another medicine or not.

Joshua was saying that the methadone does not seem to work like it did before. Dr. Donofrio wants Joshua to try this new regime before he puts him on something sronger.

Well, it is a new week and he seems to be doing much better in the neuropathy department. This past Saturday night he went swing dancing at his church. He had a great time but his legs had had it by the time he came home.

I thank God Joshua has not gotton whatever Sam and Les have had. They both, especially Sam are still coughing deeply. Sam, losing his breath as he coughs. The doctor thinks Sam has some asthma type symptoms and gave him an inhaler to use up to four times a day. That has been five days ago and finally today Sam said he is starting to feel better. That is a Praise the Lord.

I hope and pray all is well with you all.
Blessing,
Love, Leslie

Friday, February 20, 2009 1:47 PM CST

Hello All,

Joshua had an appointment with Dr. Frangoul on the 3rd of February. Joshua weighed in at 138.8 lbs. to be exact.
He is doing so well we do not have another appointment for three months.

I asked the nurse drawing Joshua’s blood to check his vitamin D level. It was lower than it should be, so Joshua is on vitamin D pills and will be checked in three months to see if his level is up.

We get in and out of the clinic in about an hour which is quick for us, for we are use to being there two to three hours. Joshua told Dr. Frangoul we are use to being at the clinic longer, to which he replied we could go to the gift shop or get something to eat if we wanted spend more time at the hospital.

We have enlisted the help of a career coach for Joshua to help Joshua find the best career for himself. He does fine at the E-bay store, but it not his passion.

Joshua has not caught any of the sickness going around, (Praise the Lord) but he has gotten “his’ type of sickness, as he calls it. Being dizzy, more tired than usual, neuropathy raging and sensitive to touch are his type of symptoms. He has been home a couple of days from work because of this.

Les and Sam have been sick with congestion and coughing. Les especially had been hit hard, and it was wearing him out. It had been going on longer than a week, but he is now on prednisone, and finally starting to feel better after a week and one-half. Health is a wonderful gift we continue to realize.

Blessings and prayers of health for you all,
Love, Leslie

Friday, January 23, 2009 4:00 PM CST

Hello All,

Happy new year to you all. Joshua had a fever of 100.5 a couple of Fridays ago and got through it just fine. When we were under treatment we would have to call when his temperature reached that high. I thought we were far enough out from transplant to not to give the doctor a call, and it turns out I was right. All the baby steps continue to come, at least for me, to put him in the realm of normalcy.

Joshua had an appointment at Vanderbilt Eye Center. This was with the ophthalmologist to check his eyes. To our excitement she told us Joshua has no cataracts! Isn't that a Praise the Lord. The last two eye doctors, one an ophthalmologist, said that he did. She believes what they were looking at were congenital spots on the eye: one of these spots is the size of a pin dot, and the other is a v shape side ways. She specializes in after transplant eye check- ups, so I tend to believe what she said. Joshua will be seeing her from now on. She said it does not mean he won’t get cataracts down the road as a late term effect of the radiation, so we still need to keep an eye on him. (Ha Ha)

This past week Joshua had an appointment with the adult hormone doctor. Joshua has thyroid problems and they will keep a check on whether he needs to change dosages or not with his synthroid.

We are slowly but surely transferring to all adult doctors. We will stay with Dr. Frangoul though. If Joshua would ever need to go to the hospital, it would be at the children’s hospital where many know him and where all his records are.

Joshua continues to work at the E-Bay store but knows it is not his life long desire. Thus, he is starting to look into other things.

Have a wonderful blest day,
Continuing in his joy on this journey,
Love, Leslie

Saturday, December 20, 2008 12:15 AM CST

Hi All,

Yesterday was the six year 'anniversary' of finding out Joshua had leukemia. It is amazing to me that six years have passed and many more children have passed through the hospital with cancer. I know some have lived and some have died. Yet, for me life at the hospital seems to have stopped for me with Joshua's stay. It is hard to think life goes on even in a hospital. Our nurses and doctors lives definitely did not stop with Joshua. I know they are still working on saving lives.

I forgot to mention a recent first for Joshua. This past June, he passed the year mark for not going to the hospital; not even one time. That is a good first.

Joshua is doing fine. He had two bouts of feeling sick, one time even throwing up. I told myself I would not call Dr. Frangoul and would treat Joshua as I would Sam and not get nervous/panic. I was proud of myself for not panicking because Joshua got over the sickness and bounced back both times.
I also let him go to the dentist by himself. I know that sounds like a no-brainer, but I have always gone with him to the dentist in case he needed me. I told him to call if need be. He did just fine. Yea, for Joshua and me.

So, I am learning to let go, as he is. It gets nerve racking for me sometimes, but I get through it, and so far all has gone well.

Neuropathy continues to wear Joshua out along with being dizzy quite often. He can still sleep with the best of them; twelve hours and maybe time to sneak in a nap.

We are going to an adult thyroid/hormome doctor in January. Not sure what will happen there. It would be great if they could tell us why Joshua is so tired. I have read that those with bone marrow transplants have been continually tired even at their five year mark.

We now need fervent prayers on Joshua's career life. We are at a stand still with him. When he thinks too hard, the neuropathy in his head gets worse. We do not know how he would do working a full time job at this time. Right now he starts work at ten or eleven in the morning and works for about six hours. He does well most days, yet some days he hurts so much from neuropathy, that I need to help him out of bed, which is not often, but it does happen.

Things we are thankful for:
Joshua does have a place to work and they work with his body's schedule.
He is good at E-Bay, though he does not want to do it for life.
Joshua has a church which he loves and enjoys. He attends and likes his young adult gatherings.
He has a good friend name Luke.
And as always, he is breathing; Thank-you Lord.

It is good to be thankful and we are. May you all have a Merry Christmas and a wonderful New Year.

Love,
Leslie

Saturday, November 22, 2008 7:29 PM CST

Hello everyone,

This is a rare appearance from Les (the dad)

Leslie thought it would be good for me to share some wonderful things that happened to Joshua this week.

I received a call from Make-A-Wish about a month ago. They wanted to set up something special for Joshua and another Nashville area young man who like Joshua had met Brett Favre as part of a previous granted wish.

The first thing scheduled was a live interview by a local sports radio host Tom Abraham on ESPN radio. Joshua, Sam and I went to the studio on Thursday afternoon. Mr. Abraham had Joshua and the other Make-A-Wish boy put on headphones and then surprised them with a personal message from Brett Favre himself. Brett told them how proud he was of them and how happy he was to learn that they're doing well. He said It'll mean a lot to him knowing they'll be at the game.

The fun thing is that up to that point, neither boy thought they were going to the game. That's when the host gave each of them a pair of club level seats (best in the stadium)for Sunday's game between the Tennessee Titan's and Brett Favre's new team, the New York Jet's. Since I'm somewhat of a football fan, Joshua has graciously decided to take me with him. :)

To top the experience off, they had two different TV stations there to capture the special moment. Thursday night we watched our Nashville Fox and NBC affiliates broadcast the event on the evening news. Joshua did a great job sharing how special the whole experience was for him.

Joshua has certainly been through a lot. God continues however to do special things like this to put a smile on our Champion Warrior's face.

Thank you for your continued prayers.

With much love and appreciation,

Les

A BIG BY THE WAY: We put a new link on this page that'll take you to Rebecca and Matt's wedding photos. You can find the link below this journal. Enjoy!

Saturday, November 15, 2008 7:36 PM CST

Hi All,

We had a 'little' scare last Sunday. Joshua was climbing our pine trees to take pictures of our neighborhood and was enjoying the view of looking over our roof. He was at the top of one of the trees, when all of a sudden, the branch that was holding him broke. Joshua instinctively grabbed a branch and it broke. He fell breaking branches as he dropped to the ground. 28 feet later he landed on his back. After laying there stunned and scared for a few minutes, he managed to call me on his cell phone sounding weak and said he was hurt and needed help. Of course I flew out of the house looking for him and found him laying under the trees covered with pine needles. As frightening as it was, I was very relieved to see him force out a smile. Besides having the breath knocked out of him, he was, and is still, sore to touch in the sternum and spine. We think this soreness is caused by internal bruising. As long as he was not in any serious pain, Dr. Frangoul was o.k. with us not getting Joshua x-rayed and checked out. We are amazed at how protected he was as he fell. God still has plans for this young man of ours.

Joshua was able to go to work on Tuesday - Friday at the fulfillment center doing the E-Bay store. He worked about five - six hours a day this past week; good for him!
We love our 'boy' and thank God he is alive and doing well.

God's love and ours,
Leslie

Monday, October 27, 2008 7:57 PM CDT

Hi All,

For those of you who do not know, Rebecca, Joshua's sister was married this past October the 18th. A beautiful wedding and a beautiful bride our Rebecca was. Joshua was so happy to be able to stand up in the wedding party and be part of the 'group'.

This past Friday, Joshua went for his five year check-up. He had an echo - heart check, a lung scan, and a breathing check up. He past all with flying colors. His lung test was excellent his numbers were in the 80's for using his lungs. last year the numbers were in the 70's. His body is ready to go. We just need this dog-gone neuropathy to go in Jesus' name.

Joshua weighed in at a whopping 134lbs. I am sure the weight will come on in time.
In January at his next doctor visit he will go to the Vanderbilt Eye Center to check for GVH of the eye. If you remember from way back in the journals that is short for graft verses host disease. That is when the donor's marrow(graft) 'acts' up in Joshua's(host) body They will do some special testing. We do not expect that he has it. It just something they do to make sure he does not have it.

Joshua has not been working much at all lately. Golf Galaxy just has no customers. He is thinking of working at Toys R Us - stocking - we shall see what happens. He is hoping The golf store will get busy for Christmas time.
He still is doing the E-Bay store at the Fullfillment Center two days a week.

All is relatively calm -
God bless and love,
Leslie

Tuesday, October 7, 2008 7:20 AM CDT

Hey Everyone,
This is Joshua, the one you all have been praying for. I just wanted to let you all know that today is October 7th, which is exactly 5 years since my bone marrow transplant. 5 years since I've received the life giving transplant.

It was December 2002, when I was 15 years old, that I was diagnosed with a blood cancer called leukemia. My marrow was producing cancerous cells, and I needed chemo or else I would've died. The chemo didn't work though, so we had to figure out another way to help me survive.

Then my doctor suggested giving me a Bone Marrow Transplant. To get one, someone needed to donate their own bone marrow. Thankfully someone matched my marrow 10 out of 10 a perfect match. So on October 7th, I received my transplant, which was like getting a blood transfusion.

They said if I were able to go 5 years without getting the cancer again, I was medically cured. So here it is, the miraculous date. I am now 'by the grace of God and the Lord Jesus Christ' cured. Healed from the accursed cancer that took 3 years of my life.

The doctors were sure that I would have died 3 different times. But I am here as a testimony to God's loving grace. God's grace that I hung on to, day, after day, after day. Praise Be To God!!
Love, Joshua Your Champion Warrior

As you can see Joshua is feeling much better. He golfed with his dad, grandpa and godfather Mike Pfieffer yesterday. and today he is working.
Thanks for all your prayers - God is Good all the time.

Love, Leslie

Sunday, October 5, 2008 8:00 AM CDT

Hi All,

Joshua started to feel better on Thursday and was able to go to work for four hours. Then he came home and had a two hour nap.

Friday he was up and about and was with friends in a church activity. On Saturday, Joshua went golfing with his Grandpa and Dad. Joshua enjoyed his time with them and came home for a nap. He said the neuropathy was bothering him. Later, he was unable to finsh supper because of stomach problems. He is still not feeling totally well but he is going to church this morning. Good for him - bless him Lord

We are coming up on his FIVE YEAR ANNIVERSARY - YEA!!
Please continue to pray with me that he will feel terrific and be able to enjoy that special day.

God is good all the time-
Love, Leslie

Tuesday, September 30, 2008 11:04 AM CDT

Hi All,

The last couple of days Joshua has not been feeling well. Being dizzy and stomach problems are at the top of his list. He is having a tougher time getting asleep and staying asleep.He even stayed home from work today.

In the scope of all he has gone through this is small potatoes but it is wearisome for him so I ask you lift him up in prayer today. I thank all of you.

I know God will finish what He has started in Joshua.
Love, Leslie

Sunday, September 21, 2008 9:41 PM CDT

Hi All,

Things are on a even keel for Joshua now. The physical problems that he has seem to be under control now.
The medicines are doing there job and for that we are thankful.

Working still is tiring for him. He worked two days in a row and had to take a nap one day and continue to force himself up the other. We need to see if he can sucessfully work a forty hour week but even with the two jobs combined he does not get those type of hours.
When he knows he has to stay up he takes a nap during the day. I am sure the medicine is partly to blame. Many of the prescriptions say that they will make one sleepy.

We are coming up on the five year celebration of being cancer free since the transplant. God has so blest us.

Thanks for checking in.

Love, Leslie

Tuesday, September 2, 2008 8:55 PM CDT

Hi All,
Joshua had a great time at camp. He was able to get up and go every day. The school’s head teachers had a surprise birthday cake and a time of recognition for him in front of the whole school. He was so blest. Mrs. Mahand, one of his favorite teachers, bought him the cake. She had remembered without my saying anything about Joshua’s special day.

Thank-you to all of you who sent Joshua birthday greetings. It was great fun for him to sit and read them and to think about all those who still read the journal.

We went to the neuropathy doctor this past Wednesday. Joshua seems to be getting better in the feet and ankle department.
Every time the doctor touched him with the cold instrument or the vibrating instrument in those areas Joshua said he felt it. I had remarked to the doctor that Joshua is sure saying yes to feeling the instruments more than usual. Dr. Donofrio thought I was right, but would have to check his records.
I know I am right. Mothers just know these things….. Joshua also walked much better on his toes and did a fair job walking on his heels.

Before going home, we went to the Children's hospital and visited with one of Joshua's orginal nurses, Linda, (from the year 2002). She gave him a big hug which I know he loved.

Joshua went to work three days last week and went today and did well. I am very pleased for him. Keep up the praying for this neuropathy to leave. We can see God is answering, though it is in his time J

I have bought Ensure for Joshua. His weight hovers at about 135lbs. When he just doesn’t feel up to eating, drinking the 350 calorie Ensure comes in handy.

Thanking God for all of you and his goodness,
Love, Leslie

Sunday, August 17, 2008 9:40 PM CDT

Hi All,

Last week, the neuropathy doctor increased Joshua's dosage of the medicine Lamital. The neuropathy just continues to wear Joshua out on a daily basis. His doctor said that Joshua is already on powerful dosages/ medicine and was sorry Joshua was still in so much pain. The increase seems to have helped because he was able to work fine this past week.

Sam's school holds camp the first week of their school year. We travel about one and one-half hours away. It is a good time for returning students to meet the new ones.
I am in charge of seeing that all 200 campers get fed every day. A growing experience for me. I do everything from ordering the food to giving directions to my kitchen help.

This year, Joshua is a junior counslor and will be in the 6th grade boys cabin. A parent or teacher is the 'senior' counselor for each cabin. Joshua has always loved camp and is SO glad to be able to come back this year in this capacity.

Pray that Joshua continues to do well and can be a great help to his cabin.

Thanks for checking in on us.

God's grace continues....

Love, Leslie

Oh yes, Joshua's birthday is on the 19th of August. If you want, leave him a happy birthday note. thanks

Saturday, August 2, 2008 7:36 PM CDT

Hi All,

The bone density test came in. It is a 'Praise the Lord' report, Joshua's bones are at the level they are supposed to be. We are thrilled for him because this is one less thing to think and pray about.

Happy day to you all,

Love,
Leslie

Sunday, July 20, 2008 2:02 PM CDT

Hi All,

We just got back from our family Florida trip this past Monday. We were able to visit my brother Kim in West Palm Beach, visit old church friends Rick and Natalie Evans and Cynda Kelley and see all their growing children; it was a wonderful visit. Then we were off to Universal Studios where we enjoyed the rides, food, and seeing the boys' favorite superheroes. We were a little surprised that Joshua actually enjoyed and handled the rollercoasters better than the rest of us.

Joshua was going all day doing all that he could and having a great time. He was a good snacker more than a mealtime eater like Sam.

Then we were off to my parents' home in Homosassa, Florida. When Joshua finally slowed down, he was wiped out and used the time at my parents' home to recuperate from the busyness of the past week.

This week Joshua went to the ophthalmologist. His eyesight is a great 20/20 in one eye and 20/25 in the other. His problems are still with the medicines that he takes which make him tired and sometimes blur and cloud his vision because of the tiredness. The cataracts are growing but still are not at the surgery level. The doctor would like to wait as long as possible because he believes after surgery, Joshua will always have to wear reading glasses.

This past Friday Joshua had a bone density test which hasn’t been done in two years. At that time, it showed he was not quite up to level with boys his age. Hopefully, he will be now. We should know this week.

Joshua had his three-month checkup with Dr. Frangoul on Friday along with blood work done. Unfortunately, he lost a pound and is 139 now. The visit went fine and all they want Joshua to do is gain some weight and lotion up his skin since it is sooo dry. Josh forgot to take his soap on vacation, he had used Dial soap, and it just played major havoc with his skin.

Neuropathy is still a major problem in Joshua’s life which unfortunately still causes him to miss work occasionally. God’s grace still abounds though, and for that we are thankful.

Thanks for checking up, and blessings on you all.

Love, Leslie

Wednesday, June 25, 2008 7:39 PM CDT

Hi All,

Joshua had some pretty smooth sailing these last couple of weeks. He has a little cold now which has affected the neuropathy. He was sensitive to touch, but only for one day. He has been sleeping more because of all of this so he has not been to work this week. Today, he started to feel good after his morning nap.

Tomorrow is looking like a promising day for him. He is going to go to work and hopefully golf with Les and two other people from Les' work.

This time the cold/neuropathy was of short duration and he is able to get back into the swing of things much more quickly.

Love and blessings to you all,

Leslie

Saturday, May 31, 2008 2:52 PM CDT

Hi All,

Les's work had a picnic at Nashville Shores today. Joshua went and had a good time running around. I sure am happy for him. When Les and Joshua returned home, Joshua was fast asleep in the car.

Friday night Joshua and Sam went to party given by the drama department of Sam's school where they enjoyed playing "capture the flag".

I now have Joshua drinking my homemade lemonade. It is made with water, fresh lemons, stevia and xylitol. those last two ingredients are natural sugars which do not spike blood sugar in the body. Joshua loves his carbs and I am trying to reduce his sugar intake. He had agreed to this which makes it easier for me.

He is doing well at all three places of employment. We are presently enjoying some smooth sailing with Joshua and his health challenges........ Praise the Lord.

Love and Blessings,
Leslie

Saturday, May 24, 2008 9:10 AM CDT

Hi All,

Joshua is doing well. He had a slow day after the grass cutting on Sunday but other than that he is humming along fine. He has not missed any work. This past week at the Fulfillment Center, Dave the owner had to leave for the week and put Joshua in charge of opening and closing the business plus extra logging in work on the computer. We sure are proud of Joshua. He was all smiles for getting the opportunity.

This past Wednesday we went to see Dr. Donofrio, the neuropathy doctor. Joshua is going to go to three methadone daily instead of the 4-6 he had been taking. In its place will be an extra 50mg of Lamitcal morning and night. He is already taking this medicine and has plenty of room to go to a higher dose with it. It is not a narcotic so hopfully this will be a good replacement.

I also asked about Alpha Lipoc Acid, there has been good results with it for those with diabetic neuropathy. I had Joshua on 200mg daily. Dr. Donofrio said I may give a dose up to 1800 mg. daily. That is exciting to me. I pray this, along with the extra Lamitcal, will put a considerable dent, if not remove the neuropathy pain that Joshua still endures.

Blessings on you all and thanks for checking in.
God will complete what he has started.

Love,
Leslie

Saturday, May 3, 2008 7:21 PM CDT

Hi All,

Joshua ending up sleeping seventeen hours, getting up at 9:30 a.m. Friday morning. It still was slow day on Friday for Joshua. Neuropathy wise he was better but he had traded that pain for stomach problems. Friday night we saw some improvement as he and Les played with our newly aquired Wii game. He slept twelve hours Friday to Saturday and woke up at noon. He was still taking it slow but by 6:30 p.m. he was feeling good, so good in fact that he got dressed and went outside to cut the grass. WOW!
He is now up and running, thank-you Lord. He is planning on going to church tomorrow and getting back into life.

Thanks for praying and checking on Joshua our Champion Warrior.

Our God is the God that Heals,
Love and Blessings,
Leslie

Friday, May 2, 2008 8:07 AM CDT

Hi All,

Joshua is still sick with the sinusitus and to add to that he is having a extremely hard time with the neuropathy. I just remembered now, that when he gets sick the neuropathy acts up.

He napped yesterday and later went to bed on the couch around 4:30 p.m. It is now just after 8:00 a.m. and he has not budged. I woke him to give him his antiobotic, Levaquin, and he went back to sleep within a couple of minutes.

This sleep should help him. Joshua has not been to work since Tuesday. All his places of employmentment are very good to him and o.k. with his needed time off. Thank-you Lord. Today will be a better day.

Happy news for Sam. He is done with physical therapy.This is one thrilled young man. He is so busy, he is involved in football workouts,play practice,(My Fair Lady) and his school 40 hour project. You can see why he is glad to delete therapy from his list of things to do.

Thanks for checking in.
God WILL complete what He has started in Joshua.
blessings and love,
Leslie

Tuesday, April 29, 2008 10:11 PM CDT

Hi All,

Two weeks ago, this Wednesday, Joshua went to the clinic to pick up a ritalin prescription and have Cassie look at his chest,
because it was full of itchy red bumps. Joshua came home and told me it was chicken pox, and then he said he was just teasing. He has folliculitis, which is an inflammation of the hair follicles, so she wrote out a prescription antibiotic cream called bactroban. A week later it was better. Yea for Joshua.
Last week he started to get a sinus infection. Dr. Frangoul told us we could see him or Joshua’s new GP. I had Joshua go see the new GP. I e-mailed Dr. Frangoul and said I would cut the umbilical cord with him and Cassie and see this new doctor. Big step for us. He thought that was great and to keep him posted.
This new doctor just gave Joshua cough medicine and told him to use Afrin nose spray. We will see on this matter, for I was hoping he would give Levaquin, an antibiotic, but he did not. We will see if this is enough.

Joshua was one tired young man this weekend from working so much. He was able to rest when he got home each day though.

We went to a friend’s wedding on Saturday at our old church in Columbia. Joshua was just enjoying himself, talking with many old friends/ acquaintances, and looking at ease. My friend, Vicky, said Joshua looks like he has caught up socially. Joshua had told me working at Golf Galaxy has helped him to converse more. He works the register and has to talk with every customer. Good for Joshua!

Today, Tuesday, the sinusitis is full force. I had to e-mail the new doctor for an antibiotic. At first, he faxed in to the pharmacy Amoxicillin. I was not happy about that because Dr. Frangoul always gave Joshua Levaquin which is much stronger.
Later in the day, Dr. Keffer faxed in a prescription for Levaquin. I do not know what caused the change, but we are happy about it. I need to get this boy well.

Life is good. I am thanking God for all He has done.
Blessing and love,
Leslie

Sunday, April 13, 2008 8:52 PM CDT

Hi All,

Two weeks ago Joshua had worked six days straight. TOO much for him. He had slept through five alarms and was late three times. He just sleeps so hard; sometimes it is difficult to wake him up. That week wore out his body. Joshua rested some this week, and he took Monday off and came in later on the other days. His body was delighted with the change.

April 3rd we went to see Dr. Frangoul. The great news about the visit is Joshua weighed in eleven pounds heavier, and he is now 143 lbs.

Joshua has been having some trouble with the Ritalin which includes some heart racing, feeling anxious, and stressed. We took him off it this past week, but he had a hard time functioning. He was very tired in the morning and almost fell asleep at the “Our Fulfillment Center” while doing his E-bay work, messed up on the register working with the customers, and was so tired he was afraid he might fall asleep driving home. So.. Dr. Frangoul put him on Ritalin again, 10 mg in the morning and 5mg to 10mg at 12:00 noon. We start that regime on Monday.

Joshua was promoted at the Fulfillment Center which includes having one person under him, learning more on the E-Bay business, and (Yea for him) more pay.

Sam was allowed to run this past Thursday. He is still doing therapy and is working out with the football team. He said it felt good to run.

Franklin Classical School, where Sam attends, is putting on the play My Fair Lady. Sam has the lead male role, Henry Higgins. He said he loves his role; it is fun to play the chauvinistic role, something by nature he is not.
The play will be at Freedom Intermediate School in Franklin on May 9th and 10th.

Things are busy here as they are with you I am sure. Thanks for keeping up, and God’s blessings on all of you; you are all the Best!

Leslie

Tuesday, March 25, 2008 9:00 PM CDT

Hi All,

Good news Joshua is up and running today. He went in an hour late for work at the thrift/ e-bay store and did fine today.

Joshua also started up the lawn mower and cut some of the grass today before he went to pick up Les from work.
Our God said, "yes and amen" to our prayer yesterday. Yea for Joshua.

Gods love and mine,
Leslie

Monday, March 24, 2008 5:50 PM CDT

Hi All,

After doing so well these last couple of weeks Joshua is having a 'down' time. He has not been doing well since last Thursday. Even going to a friends house with Sam did not perk him up.

It is a strange thing when he gets this 'sickness' He just hurts, neuropathy wise and feels dizzy. He gets sensitive to touch and is not too excited about eating. I went to Alanta Bread Company to get him potato soup and sourdough bread which he loves in hopes to entice him to eat.I hate him to lose all that weight he gained.

He is sleeping on the couch where he has been all day.
Hopefully he will feel better after this nap.

Tomorrow is another day and I pray a Great day for Joshua in Jesus name. Amen

Love to you all,

Leslie

Sunday, March 16, 2008 11:49 PM CDT

Hi All,
Joshua has been able to do all three, (yes, three) of his jobs these last few weeks. He had only one day cut short because of pain. He is now loving the Golf Galaxy store. He does not work with the first group of people who started the same day as he did. The employees he now works with are pretty good in conversation and don‘t use the profanities the others did.

Joshua has also been working with an older woman who owns a consignment furniture/nick-nack shop. He worked with her to get an E-Bay store started. Joshua said he sure had a mess to clean up because she did not know what she was doing when she tried to get it up and running. We are proud of him for wading through the mess and helping her.

Lately Joshua has had a little more problems with Ritalin. When he was using 15 mg., his heart would just start to race. He called me one evening to tell me that he had checked his pulse and it was in the 160’s. When he came home, I checked his blood pressure and it was 135/90. Dr. Frangoul told us to use 10 mg. Joshua said his heart was still racing, so Joshua dropped the dose to 5mg. Dr. Frangoul was fine with the lowering of the Ritalin dose to 5mg.

Joshua is enjoying getting into life as a 20 year old. Yesterday, he went to work at Golf Galaxy; then out to eat with Brian, a high school friend. Today it was church and then had some hangout time with friends. It is fun seeing him making up for lost time in the social department.

God continues to be faithful and complete what He has started.

Thank-you God for all you have and continue to do for Joshua.

God’s blessings and love on you all,
Leslie

Wednesday, February 27, 2008 10:51 PM CST

Hi All,

Joshua has been doing quite well. Just a little sore throat right now.

He started his new job this past Monday. He’s working at the Golf Galaxy Store two days a week. In some ways it’s perfect for him because he loves looking good (typical golf attire) He’s not so sure how much he’s enjoying being in the world-workplace however, because of the coarse language of the college-age co-workers, when they are not with customers. At this time he is not sure what he has in common with them. It is good practice to be a light to those who may be walking in the dark. He’s pretty much been sheltered most of his life, so now is his opportunity to show Christ to the world. We all certainly know he has a story to share. Please pray with us that he’d be bold for Jesus, now that he’s in the real world for the first time. He has confessed that this second job does help him realize how much he enjoys his cozy nest at ‘Our Thrift Store.’

Friday, Joshua is going to help out a lady who owns a thrift store in Nashville start an E-Bay ‘store’. My business man son, I am excited for him.

Now a update on Sam. He continues to take therapy three times a week. Each ‘visit’ is a little over two hours. The other two days he has football practice, which involves weight lifting, sit-ups and lots of running. Though there is still no running for that boy of mine just yet, he still needs to ice his leg each night and takes anti-inflammatory pills and rubs his knee in with anti-inflammatory cream.

The head football coach has already told Sam that he needs to get the knee fully recovered, because he's planning on having him as his starting center this year. We assume there will be some linebacker play on defense also.

Sam is student driving for all you interested in how the roads are in Tennessee; beware.

Loving the journey,
Be blessed,
Leslie

Friday, February 8, 2008 6:14 PM CST

Hi All,

It has been a while since I have written about Joshua, so I will recap his last two weeks.

Sunday, January the 27th , was a ‘10’ in the life of Joshua. He had an excellent church service and then went out to eat with two friends. They discussed the sermon and prayed for each other after they finished their meal. He just loves the feeling of growth that is coming from being involved in his church. Then they went to help a girl move to a new apartment. Joshua grabbed three bags, but with using the stairs he was so shaky in the legs he decided just to carry small items.
He came home happy, but tired from the long day- a normal day for a normal young man; we were happy for him. I am beginning to see the fulfillment of the words spoken by a woman at church who felt the Lord gave her a word for me. The words were, as you may remember,
“God will complete what He has started”. Those were words of life to me in dark times, and it is breathtaking to be seeing the completion before our eyes. God keeps His promises.

By Tuesday, he was in the beginning of a neuropathy meltdown.
He was hurting so much that we could not touch him because touch produced pain. He had to be alone in his room mostly,just away from us because it bothered his body to sit by us. He also needed EVERYTHING to be in its place, (more than usual if you can imagine that, Nurse Adele). He could hardly eat and his intestinal track slowed….. down. I told him to remember how much fun he had on Sunday, and he just commented that it felt so far away he could hardly remember. It was hard to grasp the past fun when he was in so much pain.

The good of all that was I think was by his being in his room so much he did not catch the family cold that the rest of us caught. He is the only one who did not get sick. So… God can use neuropathy problems to shield him from general sickness.

Thursday night he was acting perkier, and by Friday he was smiling and ready to go see Dr. Frangoul. He was 134lb by Dr. Donofrio two weeks earlier and 132lb with Dr. Frangoul on Friday. Hey, I thought he was sick, and one can see he is heading in the right direction. Remember, six weeks ago, Joshua was 128 lbs. Joshua is taking 1 ½ teaspoons of the eating medicine (Megestrol) that is getting him to eat three times a day. He is on a peanut butter/jelly kick now, eating three whole sandwiches a day at times. However, this is not counting breakfast and supper.

This week he was able to go to work three days. This is much better than last week when Joshua was not able to finish one day.

He is feeling so good he went and applied at a small golf store for part-time work. “Our Thrift Store”, where Joshua puts up E-Bay material, only needs him now on Tuesday and Thursday at 10-2 . He wants to get out in the ‘Real’ world and work, so we will see what the Lord wants in this.

Joshua continues to make new friends and is loving his church and work. He is happy and is looking forward to the future.

I continually thank God for your lifting up Joshua in prayer; aren’t we blessed to see our prayers answered? “Yes and Amen.”

God will complete what He has started.

Love to you all.

Leslie

Wednesday, January 23, 2008 10:16 AM CST

Hi All,

Joshua saw Dr. Donofrio last Wednesday and had a good visit. We really like this doctor; he always shakes our hands when he comes into our room. He also will sit on a stool directly across from Joshua and look him in the eye and gently ask Joshua if he has any questions or concerns about himself.

Dr. Donofrio told us that he did more indepth study on the three different types of chemos, Etoposide, Daunomycin, and Ara-C (cytatabine) Joshua had and found out that they do cause neuropathy. Which, in a sense, is a good thing because that type of neuropathy is known to get better. He still has the genetic neuropathy which is known to get worse over time. We continue to pray for healing for Joshua in this area.

Joshua has finally found relief for his teeth pulling 'adventure'. He had to visit the dentist last week because he was in so much pain. His extracted areas were full of food. They gave him a syringe and told him to use it with water/mouthwash. That has kept the areas clean, and yesterday is the first day he did not need extra medicine to help with the pain.

Joshua went to work last week only one day although this week he plans on going three days.

Sam was released of his full leg brace January the 15th.
He still wears the small brace and ices it at night. Dr. Elrod said Sam should be able to start traing for football in six to eight weeks. Yeah, for him!

His joy in this journey,

Love and blessing to you all,
Leslie

Friday, January 11, 2008 8:32 PM CST

Hi All,

Joshua has had an uneventful week. Praise the Lord!

We have him walking 20 minutes a day and taking all the natural remedies for constipation along with the medicinal ones.

Today, Joshua had his teeth pulled. Two of the four being removed were partially impacted.

They had to wake up Joshua somewhat during the beginning of the surgery because he was being combative with them while he was under the light anesthesia.
I had forgotton he had done that before with Dr. Frangoul during a spinal tap.

After the procedure, Joshua said even though he was numb he was not asleep and he knew they were sawing at the teeth and pulling them out. He even remembers the stitching up. The nurse said he most likely remembers the stitching because they lighten up on the anesthetic at that time but she believes he was asleep during the extraction time.

It was not a happy time for him. He said he wanted me in there to hold his hand. He just does not like 'adult' doctors. He thinks the children doctors are more kind and personable.

He had been up since 3:30 a.m. eating and feeling a little nervous about the dental procedure. He fell asleep the minute he put a movie in about 4:45 p.m. and has been out ever since. I removed his cotton from his mouth and nary a stir from him.

Keeping His joy in the journey,

Love and blessings,
Leslie

Saturday, January 5, 2008 7:58 PM CST

Hi All,

We saw Dr. Williams, the gastrointestinal doctor this past Thursday. Joshua has gained two pounds so that is good.

This new medicine Megestrol, is giving him more problems in the restroom because he is eating more. He has had a couple of bad days. No one is quite sure what to do since he is on so many medicnes that slow down his digestive tract.

I decided to take matters in my own hands and visit Wild Oats health food store. I bought aloe vera, buffered vitamin C, capsuled garlic and milk thistle. My health book said these are good helps for constipation. We will give them a chance. Joshua just lives in the bathroom so many days. I am sure he would rather be somewhere else.

Please pray for this problem to be gone.

Thanks for being with us on this journey.

Blessing and love to you all,
Leslie

Sunday, December 30, 2007 2:10 PM CST

Hi All,

Joshua had a clinic visit with Dr. Frangoul. Everything went well except Joshua had lost eight pounds since the last visit which was 2 months ago. This now puts him at 128 with clothes.

Dr. Frangoul put Joshua on Megestrol which is very low in steroids and still will cause him to eat. On Sat the 21st, we started the four teaspoons as directed. By Sunday, the medicine had kicked in. He was at a friend's house and called to tell me he had overate. I had not heard that from him in a long time. When he came home he continued to eat. After his movie later that night, he didn't feel well and did not get to sleep till 3:30 a.m. Sam woke me at 1:30ish to say Joshua was not feeling well. Joshua indeed had a rough night between cramping in the lower stomach and finishing up with throwing-up so much of the food he ate. It was a night he is not going to forget for a while.

I didn't give him any more medicine till this past Friday which was a five day rest from the medicine. Dr. Frangoul said to start at two teaspoons, and work up to four. Joshua was too nervous about the medicine and said "No". I talked him into starting at one teaspooon then he changed his mind and said he wanted to start at 1/2 teaspoon for two days and increase by 1/2 teaspoon every two days. That is the first time he balked at any home medicine. He said that was a scary night for him. He had not thrown up since being in the hospital, and he did not like it one bit.

The more I thought about it, the more I realized Joshua was like a concentration camp victim. He was eating, but not a lot at one time, then the medicine made him eat too much. Well, Joshua's body just could not handle the food overload. I am sure he will do better on this slow dosage.

We had to get his third and final shots this week, and see the stomach doctor on Thursday the 3rd.

Joshua feels fine for the most part which continues to be a "Praise the Lord".

Blessings on your new year,

Love, Leslie

Wednesday, December 19, 2007 6:51 PM CST

Praise God from whom all blessings flow!
Praise Him ye creatures here below!
Praise Him above ye heavenly hosts!
Praise Father, Son, and Holy Ghost!

Five years ago today Sam, Joshua, and I were sitting in the doctor's office about to learn the horrible truth that my son had leukemia. Since then the Lord has placed us on top of many mountains and in many low valleys, but through it all, He has been with us, carrying us all the way. Praise the Lord for our miracle! Our whole family gives our deepest thanks to each and every one of you who has helped us and supported us along this long journey. May God bless you all as much as He has blessed us!

Wishing you well this Christmas season.
God bless you all.
Love,
Leslie,Les, Rebecca, Sam, and our Champion Warrior, Joshua

Sunday, December 16, 2007 5:36 PM CST

Hi All,

Joshua is doing well in therapy. This past week he was able to put 10 pounds on the leg press. He does two sets of 10 on each leg and then works them together with three sets of 10. I have not heard him complain about going upstairs, so I know he is getting stronger.

Joshua has also worked three days this past week and clocked out because he was hurting only on Monday. The other two days he was able to work well. He told me he is getting quicker at putting things up on eBay.

He is getting more involved in the college group at church and attended two activities this past week with some friends.

Things look like they are coming together for him in many areas. I am going to check out a hobby camera class at the community college for him. Francis, the psychologist, thought it is great for Joshua to slowly work his way into all of these activities. She had said too much too soon would be an overload for him. We can see how slowly working up to more activities is working for Joshua at school and work.

Joshua’s prayer need now is gaining weight. Last week at night he was 129 lbs. When he is sick, like on Thanksgiving, and does not eat, his weight does not go back to normal like ours would. Taking methadone and Ritalin just cuts his appetite so.

He also is getting his wisdom teeth pulled out on Thursday 1:45 p.m. Pray with us that it is relatively easy. I know one tooth is growing sideways. I do not know what that means as far as removal/pain for Joshua.

Sam is back at school and taking therapy at D1. He and Joshua sometimes go together. Good brother time I think.

Wishing you well this Christmas season.
God bless you all
Love, Leslie

Sunday, December 2, 2007 10:01 PM CST

Hi All,

Joshua was sick Wednesday night prior to Thanksgiving, and on Thanksgiving he got up for a while then napped till 4:30. He ate very little, so much for a Thanksgiving meal. By Friday night he was feeling much better, and on Saturday he was ready to go. He thinks a big part of his problem was tiredness.

I was just reading about post transplant patients, and they said three years post transplant 67f patients interviewed complained of fatigue. Joshua is four years out, and being tired is still a problem for him.

Joshua went to the new general doctor for the first time by himself. WOW! That is a big step for both of us after my or Les being with him at every past doctor visit.
He got his second round of ‘baby’ shots and the flu shot to boot. He only called me one time to help him answer some form questions prior to the flu shot.

Joshua is coming along beautifully at therapy. One of his therapists, Karen, told me he works very hard. I am proud of that.

Joshua had a red letter day last Monday.He was able to do the leg press, 10 pushes from one leg, then the other leg, and finished off with 15 pushes with both legs holding for five counts. From starting out on the first day of therapy with not being able to do one leg push on the leg press to that amount thrilled me. Karen told me she doesn’t know for sure, but she believes the press is about 40 lbs. alone without weights.

Joshua also moved up in hand weight from four lbs. to five pounds. Good job Joshua!

Joshua went to work three days this past week and did very well one out of the three days. Thursday he was so tired, and on Friday he had a lot of dizziness but still wanted to try to get things done for his boss. Les and I are proud of Joshua for wanted to work as hard as he can for his boss, Dave.

Now, about Sam, he got his knee surgery on November 30th, Friday. There was more damage than Dr. Elrod thought. He put the knee cap on place and cleaned up the frayed cartilage. Sam had been in horrible pain after coming out of the anesthesia and was crying. They gave him a pain block. They told him to not feel bad about crying because pain is pain, and even some Tennessee Titians cry after surgery.
Sam is on some oxycodone and another pill called ketorolac to boost the effectiveness of the oxycodone. Today, he is able to do home work while lying on the couch with leg above his heart.

Sam sees the doctor on Thursday to make sure all is ok with the healing process.

God bless you all this Christmas Season,
Love,
Leslie

Sunday, November 18, 2007 8:19 AM CST

Hi All,

Joshua is doing well. This week he went to work three times and on Friday he was able to work most of the time. Often he punches out because the neuropathy hurts, so I was happy to hear he had a good working day.

Joshua is still having some cramping and continues to work out the dosage of the GylcoLax for the constipation.

A week ago we saw Francis, the pediatric oncologist psychologist. (That is a mouthful) She had good news for us from the school testing she conducted with Joshua.
First, she told us the chemo Joshua had was not the kind that brings on school problems, YEA! Secondly, she said kids with long usage of prednisone and brain radiation like Joshua had generally suffer mind wise. She said she had never seen such good scores as Joshua had and was so pleased to tell us that. She does not believe Joshua’s mental capacitates suffered at all. Isn’t that a Praise the Lord?? She said they do not know why some kids get problems and others do not. She thought some may be predisposed like Joshua was genetically to neuropathy. Joshua was either average or above average in all categories except one. That one was when she would tell a story, then he would have to immediately tell it back to her. She said he got the main points but was short on details. Then she had him repeat it one-half hour later and his story was hazier than the first.
Francis said we need to look at Joshua when we want to tell him instructions/ something important; write it down if it’s very important and if it is any kind of list.
Joshua is excellent on visual remembrance and she told him to think more in pictures to help him remember things.
When I get the full test I will brag some more on Joshua.
I told Francis it was fine to share with Dr. Frangoul. I am sure he will be happy to know the good news after all the physical problems he has worked through with Joshua.

Joshua started physical therapy this past Wednesday. Karen, one of his therapist asked what were his goals.
He told her he wanted to be able to walk up the stairs and not be tired and to be able to stand more than five minutes.

He warmed up for six minutes on the bike that works his arms and legs. Then he did some leg lunges and was off to the leg press. He was able to work the leg press with two legs but unable to do it with one leg. We realized his legs are pretty weak since she was working him on the machine with no weights! To give you an idea on how weak his legs are, I do 45lbs one leg 3 sets of 15 and Sam does 125lbs with only one leg. I told Joshua he can only go up from here. I wanted to tell you all this so you can rejoice when Joshua is able to actually push weights on the leg press. That will give us clear measurable progress.

Joshua also did wall push-ups and triceps push-ups (putting his hands on a chair as his body looked forward) which hurt his hands so they had him make his hands into a fist; that helped.
The therapy should help Joshua get stronger with all this strength training. It is just finding the right way do it where it does not hurt his body. The therapists have been good at finding new ways to do an exercise if a particular one hurts him.

Having an attitude of gratitude for all the Lord has done.

We pray that everyone has a wonderful Thanksgiving.

Blessings and love,
Leslie, Les, Rebecca, Sam, and our Champion Warrior, Joshua.

Wednesday, November 7, 2007 6:59 AM CST

Hi All,

Joshua received his shots last week; they included MMR, Polio,
Hept.B, Tdap, (tetanus, depthin, percussis.) The MMR hurt the most, the nurse said it is because the liquid is so thick.

For the next three months, I have to take Joshua in for his shots; then he will be set.

I had gone shopping the next day and met a woman caring for her fussy baby. We got to talking and she told me her baby’s name was Joshua and he got four shots yesterday. I laughed and said, “ I have a son named Joshua and he got four shots yesterday though he is twenty years old. She was amazed and I shared with her the reason for the shots at this age.

Joshua is doing o.k. however he continues to hurt a lot. His joints have hurt now for almost three weeks. Why, I do not know, at one point he could not bend his knee to walk upstairs. He also has sharp stabbing pains by the bones at the elbow area. It is slightly red by that area also. We called the new primary doctor. We may see him if it continues since it has started two days after the shots and continues to get worse. The neuropathy continues to be no fun at all. I know Joshua is tired of always hurting. You can pray that the pain problem will be gone in Jesus’ name.

GOOD NEWS…. Dr. Donofrio, the neuropathy doctor has agreed for Joshua to have physical therapy. I am thrilled. He will get the therapy at D1, a sports therapy gym partly owned by Payton Manning. (This is the place where Sam gets his therapy with the knee injury) The therapist will give Joshua an assessment and get him on his way. I think this will be good for Joshua for three reasons. One, he has a weak body for a young man his age and this will strengthen him. Two, it is bound to have him feel better emotionally about himself. Three, he will be out meeting all sorts of new people. Hopefully he will start the therapy in a couple of weeks.

Knowing God will complete what he has started and thankful for it.

God bless and love to you all,
Leslie

Saturday, October 27, 2007 10:46 PM CDT

Hi All,

We have a wonderful Praise the Lord; the colonoscopy showed no signs of Crohns or any other disease. Joshua is actually doing quite well. He only has occasional cramping (usually while eating) which causes him to stop eating for that meal. The Gloyate powder keeps him regular. Joshua weighed in at 133.4 not losing or gaining for some months now.

We visited the neuropathy doctor 10 days ago. He put Joshua on more Lyrica since the neuropathy is still bothering him. That turned out to not be a good thing, because the extra 25mg 2x a day really made him groggy, so that was dropped.

We saw Dr. Frangoul this past Friday. He and the neuropathy doctor, Dr. Donofrio decided it was o.k. to raise the methadone to four pills a day, but they decided it’s better if he takes it on a regular basis. He was only taking it when he really hurt and when he had good days, he wouldn’t take any. Dr. Frangoul said it is too hard to see what Joshua needs when there’s no consistency with the methadone and Ritalin. Our job for the next two months (yes, two whole months before the next appointment) is to have Joshua take the medicine on a regular basis and record how his days are. Then Dr. Frangoul can decide if the prescriptions are at the right dosage.

Joshua continues to go to work two days a week but generally only works about three hours a day because of having to take breaks due to physically hurting. Hopefully getting him on track with the medicine will make his days better in a long run.

I’m taking Joshua to a primary doctor on Monday. He will be helping Joshua with little things like getting him his childhood shots (which he needs all over again.) We will continue to see this doctor for general visits when needed. This doctor is part of Vanderbilt so he can access all of Joshua’s records. Dr. Frangoul can also see what this new doctor is doing for Joshua as well. I think it is a great set-up. We were told by Dr. Frangoul last December to find a primary doctor. I finally feel comfortable to move out ’slightly’ from his covering (though Joshua wasn’t crazy about it.) It will be a slow move and will be good for us.

God will continue to complete the work that He has started.

God bless and love from us all,

Leslie

Monday, October 15, 2007 9:01 PM CDT

Hi All,

Joshua has been doing well for Joshua. Two weekends ago he had a fabulous time with his friend Tyler Hardee. Joshua even got to shoot a bow and arrow. He loved it!

The neuropathy doctor visit went well. Joshua was tested for reflexes and strength. He is not normal in those departments. The doctor would like to get Joshua off the methadone though he said it was a piddly amount and most likely will send him to an adult pain clinic in the next six months.
The neuropathy medicine Lyrica was increased an extra 50mg. a day. In hopes it would help the pain.

We will see the doctor in another three months.

Joshua's grandpa (Les' dad) is here. Joshua and Les both get to golf with him. Good exercise...

I made spagetti tonight for dinner. Joshua asked me if I made it because I knew he would eat it. I think he is doing better in the eating department but I am not seeing the weight go up. Why doesn't it work for us that way???

Joshua is working a little more at his job. He is allowed to 'punch' out anytime he needs to take a break. Joshua told me sometimes the neuropathy in his head hurts when he thinks too long as when he writes his blurb for the selling of items for e-bay.

Sam will have surgery for his knee because the cartilage has been torn. We do not know the date of the surgery as of yet.

Wednesday is the colonoscopy. Joshua is still is having cramping though to a MUCH lesser degree. We will see if anything shows up in this testing.

Enjoy your night and God bless,
God continues to be faithful,

Love, Leslie

Saturday, October 6, 2007 5:42 PM CDT

Hi All,

Joshua continues to have digestive problems, so Dr. Williams will be doing a complete colonoscopy on October 17. Joshua was having problems with feelings of throwing up along with pain in the upper intestinal and reflux area this past Tuesday night. If nothing shows up in the scope, they will pretty much term it Irritable Bowel Syndrome.

We see the neuropathy doctor this Wednesday. Joshua continues to suffer from pain and it would be great to get him on a medicine that takes the pain away.

Joshua’s brother Sam had 130cc of fluid removed from his knee this past Monday. That is a lot of liquid. He said it was not too bad however because the nurse did a good job.

They did an MRI and it looks like the cartilage is torn, so we’ve been told that they will need to do surgery again.

Sam re-injured his knee last Friday night during his schools football game. He had just stopped an opposing player and his knee just went out on him, no one even touched it.

We will go with what the doctor says concerning Sam’s football ‘career’.

As my dad would say, “And life goes on “ and so it does.

While you're on your knees for Joshua, please pray for Sam. He absolutely loves the game of football and with two years of high school remaining after this year, he'd hate to have to give it up completely. We especially need to have wisdom while deciding with the doctor if he should attempt to try to play anymore.

Continuing in His joy on this journey,
Love and blessings,
Leslie

Sunday, September 30, 2007 3:15 PM CDT

Hi All,

Joshua had the CAT scans on Friday. Before he could take them he had to drink the barium, not one of his favorite things to do.

The scans of the stomach and pelvis area showed no Crohns or anything else for that matter. Which is a praise the Lord. There is no know cure for Crohns at this time. I am SO glad thatJoshua does not have Crohns it would have been a lot for Joshua to bear along with neuropathy.

They are going to treat his problem as constipation. Dr.Williams, the GI doctor, said with the surgeries,the fungus, and medicines Joshua has taken and continues to take together this has made a mess of Joshua's body in this department.

Today, Joshua is taking a 'cleaning out' powder every 30 minutes to clean out his system then he will be on a regime of the 'medicine' once a day. We will certainly be adding more fiber to his diet also.If this all works well, great, if not they will do a colonscopy just to make sure nothing was missed on the other scopes and scans.

It was a tough week for me because he needed me so much and I watched him being in so much pain. I had a couple of good cries for him. Again, I have to believe God will take care of Joshua in all ways. Sometimes it is hard to remember that.

Sam popped out his knee again, Les will take him to the doctor on Monday to drain out some liquid and get some X-rays to see what has actually happened... If that boy didn't love football so much it would be a no-brainer to tell him enough is enough. He is on crutches and is back to using the ice machine at night. We will go by what the doctor says. It is a good thing he is the doctor for the Tennesse Titans and thinks about down road not just the here and now.

God is faithful to complete what he has started.

God bless and love,

'Nurse' Leslie

Thursday, September 27, 2007 10:14 AM CDT

Hi All,

Joshua had an awesome day on Sunday. He went to church our to eat with some new friends and then to a movie. We were so happy he could have some fun. Monday he did well also. Tuesday night was a painful day in the tummy department. He could not finish his meal. Wednesday he did well till he had to use the bathroom, another horrible time. Today it is not going much better.

Friday he is going for some CAT scans the pelvis and sinus areas. After that we should hopefully know what to do.

Pray for strength for Joshua is worn out emotionally and physically.

God is faithful and will complete what he has started.

Love and blessing to you all,
Leslie

Saturday, September 22, 2007 12:06 AM CDT

Hi All,

Yesterday, was a great day for Joshua. Even though his body was sore, he played the drums, at home, and went to Southern Ice to ice skate and play laser tag. Les's work had a party there so it was free of charge. Joshua did remarkablly well in the skating. Then all of us played laser tag. I was shot at so many times I know I would not be good in war tatics.

Joshua did not eat much but enjoyed what he ate. I think the smaller meals are the way to go for him.

Because of the last week of bad days it was wonderful to see Joshua feeling so well on Friday. He came home and even was up to organizing his bedroom. He was like the everyready bunny.

Expecting a great day in the Lord for Joshua. I am going to wake him up now and get going..

God is faithful,

Love and blessings,

Leslie

P.S. Joshua's bloodwork showed he did need the synthroid for his thyroid. To bad, that would have been a 'fun' miracle. Dr. Frangoul would not have believed it.... Oh, well...

Thursday, September 20, 2007 9:15 PM CDT

Hi All,

Joshua has had two nights of much better sleep. Thank-you for all your prayers.

The scopings went well, without a hitch and it took about two hours for him to wake-up from it, (our little Sleeping Handsome)

He was HUNGRY!!!!That was good news to us. Joshua had not eaten for about 20 hours. It may take a while but he does get hungry. We took him to Cheeseburger Charlie's. A place FULL of calories. He ate a burger, some hot fries and a banana split shake. They tell one to go light on the food after procedures like that. I find it amazing he did well that night with all that he ate.

Today he was back to the same old body problems that I talked about in the last journal.

Dr. Frangoul called and told me there was no GVH evident in his stomach or colon. The next step in a CAT scan of his stomach area. If nothing shows up there they will do a complete colonoscopy. Dr. Williams, the GI doctor
is concerned that Crohns has made a comeback or it is irritable bowel syndrome. We do NOT want either one.
Joshua has had sores with pus in them on his legs and stomach. Believe it or not that is a sign of Crohns or irritable bowel syndrome. Another not so good sign; Joshua also has not gained back the weight he has lost from the last sickness. He lower tummy was tender to the Dr.'s touch.

Wait, pray, and see what happens. I have recently realized I have a chronically sick child at this time. Wow! Leslie, what gave you that idea??? Hey,it only took me almost five years...

I get my hopes up when he is well for a day or two or praise be a week or two then SLAM something happens and BAM I feel we are back to square one. Well, almost square one.

God is still in control and faith and hope are two very good things to have in times like these.

God is faithful to complete what he has started,complete healing.

Blessing and love,
Leslie

Tuesday, September 18, 2007 9:47 PM CDT

Hi All,

Joshua is getting three scopings on Wednesday the 19th of September at 3:00 p.m. In addition to the stomach and the colon scope, he is getting his bronchial tube looked at. This was decided at his lung doctor visit this past Monday. He has been coughing up 'stuff' since June and medicine doesn't help the situation. You long time readers may remember when Joshua had the aspergillus infection; it attacked his lung and bronchial tubes. There may be something going on with the scarred tissue in areas of the bronchial tube. Hopefully they find things that can be fixed and Joshua can get on with his life.

The last two nights Joshua has been racked with pain from the neuropathy. His body has not been able to regulate a consistant body temperature; it was 96.4 yet he felt very hot. He also had increased pain all over his body.
Joshua has also had bad cramping in the lower tummy area again. All of these combined has brought him to tears once again and makes it hard and nearly impossible to sleep.

Pray for a good night sleep for Joshua and continued healing for his whole body.

His workplace has been great and the owner said Joshua needn't worry about the job; it will be there when he can come back. God is so good.......

Thanking God that he will complete what he has started.

Love and blessing to you all,
Leslie

Sunday, September 16, 2007 3:23 PM CDT

Hi All,

Big prayer request for all you prayer warriors. Joshua is to get scoping for his stomach and colon this coming week. He has off and on 'problems' in the bathroom and now since last week it has escalated to the point that he feels so much pain that he feels he might black out from it.
Right now he is having another episode. Please pray for healing and for him withstand this horrible pain; the pain brings him to tears.

God is faithful and will complete what he has started.

Love, Leslie

Wednesday, September 12, 2007 7:56 PM CDT

Hi All,

We have been without internet service for almost two weeks; let me catch you all up on Joshua.

His first day of work went well. He worked four hours instead of the two that were scheduled. He was fine with the extra hours; he just wished he had taken some more water and food with him. When he came home he napped for an hour. The next day was a slow day for him. Good thing he was at home all day. Thursday he worked five hours. He went in at noon instead of the 11:00 a.m. because he had been up the night before coughing and needed that extra hour to get ready for work.

Dave, the owner, told Joshua if he needs to clock out at any time to take a break, he can just go ahead and do it, and then simply clock back in when he is ready to resume his work. How cool is that for Joshua??

Tuesday was his clinic appointment with Dr. Frangoul. Joshua has gained one-half pound since the last visit; he is now 134.2 lbs. The rash is almost gone so they didn’t have the dermatologist take a look at him.

Joshua said he has not been taking his Synthroid since June. Remarkably his blood work showed he was fine without it ( if Joshua is correct about not taking it) They did blood work to see how Joshua’s thyroid is doing. Dr. Frangoul said Joshua needs the Synthroid for life because of the radiation treatments. Joshua said, “Jesus healed me. ’’ Dr. Frangoul said something like this. "Jesus heals you when you take the Synthroid, everyday." Fun ....

I have checked with the neuropathy doctor about giving Joshua a higher dose of the medicine he has Joshua on. What he has now is doing NOTHING extra for the pain. I also asked about getting some medicine when he is having a bad neuropathy day. Hopefully, he won’t have to take extra methadone then.

Joshua has been having some breathing problems lately and will see Dr. Moore the lung doctor this coming Monday.

I am so thankful that God is faithful. I am learning to just take one day at a time; each day has enough troubles on its own.

Love and blessing to you all,
Leslie

Monday, September 3, 2007 1:05 PM CDT

Hi All,

Joshua went in for an interview on Thursday; Tuesday was too busy for Dave, the owner.

Joshua and Dave were pleased with each other, and Joshua will start Sept. 4th at 11:00 a.m. He will work 11:00 a.m. - 1:00 p.m. Tuesday and Thursday.
Dave wants Joshua to run the fledging E-bay store for the company. Joshua had told him how he has sold things on E-bay and has a 100% rating. Dave had wanted someone who understands the importance of a 100% rating. The things that are donated to the thrift store that may have value will go on E-bay. Dave wants to be able to make more money, so he can hire more kids with disabilities. I am sure God will bless his path.

Joshua has to check out the value of the things coming in the store. One of the items that were donated were 250 Marvel Comic cards, they are like football cards. What is sooo cool is Joshua has been reading Marvel comics for a little over a year now and knows all about the characters in the cards. Dave also sells Lego’s on occasion. We all know how Joshua LOVES Lego’s. Just those two things make us think this is a God fit. It is a Christian organization who understands if an employee is ill. I told Dave how Joshua was sick for 10 days, and he was o.k. with that. Dave said “We are the most understanding place to be working for.”
Dave told us he has a daughter with disabilities so he understands.

The rash seems to be going away on its own. Sometimes it pops up in a new location, but Joshua is looking better.

We are all thrilled for Joshua, and he is so excited to start working.

God will complete what he has started.
Love, Leslie

Monday, August 27, 2007 8:54 PM CDT

Hi All,

Monday the 20th I took off for Sam’s school camp. I was in charge of the food and the preparation. It was a little scary because the buck stopped with me. All in all, the experience was wonderful. My friend made up the worker's schedule. We had 19 of us at various scheduling working the kitchen. I thank God for how well it went.

During this time Monday-Friday, Joshua was on the couch miserable. He could not really eat because he was cramping so much in his lower stomach, and he also had diarrhea again. The neuropathy is always worse when he is ill, so you can imagine how he was feeling. On Friday, he started to get spots all over his stomach and thighs. I was concerned it might be the chicken pox since it seemed like he had a light case in June.

When I got home from camp on Friday, I took Joshua to the clinic. He does not have the chicken pox, but they think it is contact dermatitis. His weight fell from 136.8 lbs. to 132.8lbs. He told Dr. Frangoul he wants to eat, but his stomach cramps so much he dare not try.

They did give Joshua I.V. fluids which took about two hours to complete.

Joshua has been feeling well (Joshua well) since the doctor visit. He is also eating again. So let me say once more…. He is on the upswing..

Pray that the spots go away or we will have to go to see the children's dermatologist at Vanderbilt.
Since the dermatologist in Cool Springs has not done well in the rash department for Joshua, Dr. Frangoul want us to go to the Vanderbilt dermatologist.

Tuesday, tomorrow, we are checking on an employment lead for Joshua.
It seems this place hires kids who have physical problems and works with them. If the kids are sick or have doctor visits, the owner is o.k. with that. Joshua would like to work three days a week. He could rest in between which is ideal for neuropathy.

Please pray for us tomorrow as we check this place out.

Thanks for your prayers.

God will complete what he has started in Joshua.

Blessing and love,

Leslie

Sunday, August 19, 2007 8:11 AM CDT

Happy 20th Birthday Joshua!

Hi All,

These last ten days have not been very good for Joshua. To begin with he’s had diarrhea for five of the ten. Sometimes I think because of the intestinal surgery, things don’t always go well in that department. I’m going to let Dr. Frangoul know that I would love for Joshua to get checked by his intestinal doctor, just to make sure all is well; hopefully he’ll agree and arrange it.

This past week Joshua was extra sick; we’re not sure what exactly caused it. He was still eating normal for him, but was dizzy and sleepy more than usual. One day he slept 15 hours!

Yesterday he started to feel better and was able to go to Wal-Mart and Barnes and Nobles bookstore. I love it when he gets out and does something on his own, just like a regular young man, Yea, for Joshua!

Our visit to the neurologist was not good, in fact it was a horrible time for Joshua; so much so that I had to control myself from crying. The procedures were so hard on him. When we were done and out the door he said “Never again.”

It all started out o.k. with the reflex testing and the cool tool testing. The cool tool testing was with a metal looking tongs that was placed on his body, to see if he felt the coolness and to what intensity. His lower limbs and feet did not feel it as well as they should have and the big toes really had no feeling of the cold at all.

The next testing, they had to keep his feet at a 32/33 C. temp. Joshua kept dropping to 30 C , so they took towels and heated gel packs and would lay them on his feet. When the temperature was correct, they started the ‘shock testing treatment’.

The neurology tech started on the arch area of the foot and sent little shock waves in that specific area to test the aliveness of the nerve. Then those in the room would look on the computer screen to see how the nerve was doing. The screen basically was flat-lining, so the tech would raise up the electrical impulse and do it again on Joshua’s foot, hurting a little but bearable, yet still no wave pattern on the screen showing Joshua’s nerves were active.. So… they raised up the electrical shock impulse again and again. By now he was crying, yet they had to hold it there for about five seconds to get a reading. This test was repeated to the calf muscle.

For some reason the tech left and Dr. Phillip’s the “fellow to Dr. Donofrio continued the process. She didn’t get a real good reading, so they tried the other foot; same pain response for Joshua. The doctor went to the calf and got better response after raising the shock impulse; again the major pain and crying.

After they finished, the doctors looked at the readings and decided it needed to be done again because the readings were not as good as they wanted. I was told that when the tech had measured where to put the shock implement, she was a little off, causing the need to do it again. They measured off an area then measured the length of time it took to get from point A to point B.

By this time I was just praying feverently and asking God to put Joshua on everyone’s heart to pray for him at this specific time. (Later, Rebecca told me a co-worker came over to her cubicle to tell her he was praying for Joshua.) God is awesome.

The next test: by now I was sitting on the bed with Joshua letting him squeeze my hand. I so wanted to take the pain from him. If I was hurting because of him squeezing my hand, so be it; as long as it made him feel better. I know it made me happy to help alleviate some of the pain for him.

The next test involved putting a fine needle a half-inch in depth into the soul of his foot. He was to relax his muscles as Dr. Phillips did it, so she could get the nerve reading.
The next reading came as she took the needle and turned it around and around. Not fun by any means… It was during this test that my fingers were really squashed; I considered it all joy Lord…

The reason they did this testing, was to see if the neuropathy was worse and to see if the neuropathy came about because of genetics or chemo.

Dr. Donofrio pretty much ruled out chemo. He said the chemo medicine Joshua received did not cause neuropathy. The nerve testing proves almost 100 percent that Joshua has genetic neuropathy. According to Dr. Donofrio, genetic neuropathy only gets worse little at a time year by year. It does not get better as chemo neuropathy does. (We of course rejected this report in the name of Jesus.) Please pray that our great healing God would intervene.

When they were watching the computer screen the genetic neuropathy shows up as higher and slower waves and the chemo neuropathy shows up in lower and faster waves

Joshua’s large nerves are the poor testing ones, so the little nerves pick up what they can. That is why he does not feel surface touch in his foot, but bang it and OUCH!.

They also said he had hypersensitivity to touch. Sometimes he can’t sit on the couch with someone because of the pain caused by a simple touch. Other times he will say,” Don’t hug me Mom; I hurt.” (you can imagine how I feel about that.)

And lastly he also has autonomic nerve deregulation. This is where his body will give him hot ‘flashes’ that last for hours, unless we turn the air down. At other times he will freeze and need a ton of clothing. He used to feel both sensations on a daily basis; lately however it’s just been the long hot ‘flashes.’

When we left the testing room, he was not talking… not until we got to the car, where he asked if he could drive, which I said “of course.” It was obviously important to him. At this point, I was going to give him just about anything he wanted.

He told me he felt like the day in June of 2003 when he was told by Dr. Rhodes he had relapsed. It’s a hard road to travel for Joshua and the rest of our family.

We had our good cries and then made the decision to move on. Joshua made the statement; “the greater the problem, the greater the miracle”. It’s now time for rolling up the sleeves and get busy in prayer and action. Please keep praying for Joshua for healing and strength. Thanks to you all.

Today we're going to celebrate Joshua's birthday and praise God for 20 challenging yet wonderful years. We're blessed to still have him. It would be great if many of you could bless Joshua by taking the time to send him birthday blessings in the form of a guest journal entry. We know he would love to read them.

God is our strength; our very help in time of trouble. By his stripes we are healed. Amen and Amen.
Love to you all,

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

Friday, August 10, 2007 9:32 AM CDT

Hi All,

Joshua’s skin biopsy was benign. Benign is a beautiful word in my vocabulary.

The rash that Joshua had from the Polysporin is back to a lesser degree though. I am wondering if it is even the Polysporin because we have not used it since, and we had not used it when the rash first started.
I am to put the Triamcinolone crème on twice daily and call the dermatologist this coming Monday to let them know what is happening. It seems like it is always something. I am not complaining; I am just amazed how after four and one-half years we are still working on Joshua’s body to make it whole.

We were seen by the new adult neuropathy doctor this past Wednesday. His name is Peter Donofrio and comes with 25 years of experience. There are two other neuropathy doctors in the state and both are in Memphis, Tennessee. We are blessed to have this doctor at Vanderbilt.

His ‘fellow’ doctor did some testing on Joshua. Joshua had poor reflexes in his bicep area, was weak in his wrist area, and had no feeling in his big toes. His right toe was floppy, no muscle movement at all.
He was unable to do either test at the office which were putting one foot in front of the other, or walking only on his heels at the doctor’s office. He did do better at home though for some reason. Joshua did the tightrope line at home though I do not think it would pass a sobriety test. He also walked on his heels for three steps.

This coming Thursday, August the 16th Joshua is getting an EMG which is short for electromyography. He had one in April of 2004 which was not a lot of fun but necessary to find out if the neuropathy is better, worse, or stable from that time period.

We were able to drop the night time nortriptiline, but we added a new medicine named Lamictal to be taken twice daily. The drawback is that it can make one sleepy, so we will see what happens.

The neuropathy doctor thinks Joshua had neuropathy prior to chemo. The reasons are: when one has Crohns, one is more predisposition to neuropathy, Les’ mom had it, and finally, weird as this sounds, Joshua had a long thin foot with a high curve to it (though he has flat feet), and his toes curl under, another sign of one who had tendency towards neuropathy. Unbelievable isn’t it.

Dr. Donofrio is checking to see what type of chemo was used on Joshua, some cause neuropathy.

Though this would explain why every other child who got neuropathy from the chemo is healed of it now; they did not have it in the first place. When one has it latent as it was for Joshua and then gets chemo, it worsens/ brings on the disease, and without God’s intervention, the person will have it for life.

Joshua was awesome. When we were leaving the office he said, “The greater the problem, the greater the miracle.”
We can be proud of our Champion Warrior.

Joy on this journey and God will complete what he has started.

God’s blessing and love,
Leslie

Thursday, August 2, 2007 2:02 PM CDT

Hi All,

We are on the upswing once again. The back problem was an allergy reaction to the Polysporin. It took about a week for the bumps to go down, and now he is just left with some redness which I am sure will disappear in time.

This week we get the pleasure of going to Vanderbilt four times.
It really is not all that bad; it just cuts into our day dramatically.
I guess we are just as used to going to the hospital as part of our lifestyle as going grocery shopping.

Anyway, Joshua had some blood work done this past Monday. They checked the function of his adrenal glands. He has been off the hydrocortisone for two weeks now (he has been on it many months). The hydrocortisone jumpstarted the glands into working, so now they want to see if they are working on their own.
We think they are working because there have been no problems since he went off the hydrocortisone.

A nurse gave Joshua intravenously one microgram of CTH (Adrenal Cortiatrophic Hormone Stimulation Test). What she literally does is send a chemical message to his brain by way of this medicine called Cortesin; it will tell his brain to pass the message on to his adrenal glands to release the hormone, cortical. This is the stress hormone; normally we produce it in great volume when we go through a body stress like: a trauma, high fever, waking up from anesthesia, and starvation. Those are body stressors; a bad day at school is not a stressor. Rather than put him through one of those, they bypass the stressor and use chemicals to trip that button so that he will produce cortisol from his adrenal glands. With this medication, it produces three releases approximately twenty minutes apart.
That tells them how often to take samples of Joshua’s blood. It will be at twenty, forty, and sixty minutes. Then it is sent to the lab to see if he is now making enough cortisol. If his adrenal glands are not working, he will be back on the hydrocortisone for life.

Joshua is completing the school/psychology testing Tuesday and Thursday.
Friday we have a regular clinic visit.

Joshua is doing well, and we continue to work on food eating. I have been getting him Poncho’s cheese dip lately. He loves it and boy is it calorific.

Have a great day, we will.
Joy on this journey,
God’s blessing to you all,

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

Tuesday, July 24, 2007 8:59 PM CDT

Hi All,

Joshua is doing well again in the neuropathy department. He took a two hour nap last week Thursday when he felt so badly and when he woke up he felt fine. It was then I remembered if he does not get the right amount of sleep, his body will react badly with neuropathy. He had slept at a friend's house and woke up after four and a half hours and could not get back to sleep.

The next adventure in Joshua's medical life started 12 days ago when the dermatologist removed a suspicious looking mole on his back to check it for cancer.

I asked him if he needed me in there when they did the procedure. (last time he did not feel it at all; nor this time) He said he was fine. I left to do doctor paper work etc.

When that was done I went by the room to wait till the procedure was finished. I didn't want to go in and disrupt anything. All of a sudden I was thinking, "What if this is cancer?" I went to talk to a nurse standing by and asked her what procedures are done if this turns out to be cancer. Suddenly I found myself starting to cry and I couldn't stop; I was a mess. I guess there is still a lot in me that is 'undercover'.

Outwardly I knew it was not cancer but my heart just started to fear. I need to glue Isaiah 26 3-4 to my forehead. 'God will keep them in perfect peace who's mind is stayed on Him'. That has been a standing verse for me and my thoughts on Joshua; forever it seems. I need to continue to keep it in the forefront of my mind.

Joshua saw me crying and was so sweet to me by just putting his arm around me and saying, "It will be o.k." I told him I just want him to be a normal kid. He replied that he won't be a normal kid but he will be a normal adult. He showed me that he realizes he is past the kid stage and is headed into his adult years. I thought that was an interesting answer. It was good for me to hear how he is looking forward to his adult years being healthy. Yea for Joshua!!!

Joshua also told me after the fact that he wished I was with him for the procedure,"You are always with me Mom."
He said he almost asked "Where is my mom?" I guess he didn't know he needed me till every thing was happening, though he did say it was kind of a growing up experience for him.

The stitches never got infected but a ring of small 'pimples' started around the stitches. I put on Polysporine and it didn't seem to help. To make a long story short, in four days he had a 9 inch by 9 inch angry red area of infection on his back. It hurt somewhat and was itchy.

On Monday our dermatologist was in surgery all day, so we went to see Dr. Frangoul. (So much for our hope of not having to see him for 6 weeks) He thought it was some type of contact dermatitis. He gave us a prescription for a steroid cream, which we used for a day. Today we went to see the dermatologist. She said it is either an allergic reaction to the polysporin or a fungus. Oh yea.

For two days we're to use a creme called Triamcinolone. If that doesn't work, we should use an anti-fungal creme and call her. Hopefully it is just an allergic reaction to the polysporin.

Also pray for Joshua to get eating again. Unfortunately he weighed in at a whopping 134.6 this last visit. I buy him what he wants but sometimes he just can't eat; says he feels sick. Supper is his best meal.

Thanks for all your continued prayer support.
God will finish what He has started on this journey,

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

Thursday, July 19, 2007 4:01 PM CDT

Hi All,

I can't beat Joshua's fisherman story but I will add to it though. Joshua had also caught a small shark. After it was thrown back in the captain remarked to them they could have kept it and ate it if they wanted. Oh, well......

Joshua has had an unusual day of lots of neuropathy pain. Nothing is taking the pain away. He also is not eating because he then feels sick. I am looking and praying for tomorrow to be a MUCH better day.

Since Joshua has been doing so well lately Dr.Frangoul did allow us to change the next clinic appointment to August 3rd. Which means about six weeks without a doctor appointment.

Joshua has started testing at the hospital to see where he school-wise needs help. It is six hours of intensive testing. Lots of oral questions like, "Why do we pay taxes?" He also had to put puzzles together and do oral sequencing. Which is when the psychologist would put random numbers and letters together and Joshua would repeat the best he could. She also did sequencing where he would have to repeat it backwards. I am not sure how I would do with that one.

This testing will be helpful for when Joshua goes to a trade school or takes classes. If he has any special needs due to all the cancer treatments and radiation, the school will know and be able to help him reach his full potential. There is so many wonderful people out there that want to see these kids who have gone though cancer have a fighting chance. I say "Praise the Lord" for this knowledge.

God will complete what He has started- YEA!!

In His love,

Leslie

Wednesday, July 11, 2007 2:12 PM CDT

Howdy ya¡¦ll,

This is your favorite cancer survivor from Franklin, Tennessee. I'm gonna tell a great story of my fishing trip, down in the Gulf of Mexico. My grandfather, brother, and myself, drove down to the port where all the fishing boats were. Our captain was meeting us at 11:00a.m.

Well we arrived and made it 20 minutes early. When the cap finally arrived we jumped in our fishing boat, ready for a first time experience. The captain pulled the top over the middle of the boat so the sun wouldn't be directly on me during our voyage. Once we were all ready, we took off towards the south and freedom.

The ship shot forward at 25mph and the breeze blew on our faces as we traveled toward our destination. When we arrived at the tiny island we pulled over and let down the anchor. Sam and I got our fishing poles in the water and waited for the pull on our string that would mean dinner that night. Well Sam was blessed to be the first to get a pull and it ended up being a sting ray! Well when that happens you have to cut the string, which the captain did. I was second to the get the tug and boy oh boy was it ever a tug. I still have imprints on my fingers from gripping the pole so tightly. I ended up catching a red fish, 19in long.

(The limit you could catch in red fish was four and the biggest you were allowed to catch was 27in.) After that I had a blue fish on the line and he ended up biting the line and so I did not catch it. I ended up catching another red fish that was 24in long. As well as a catfish, a black tip pup shark, and a flounder. Sam caught a 22in red fish and caught nothing else to bad. But we had such a blast being with our papa and fishing. It just don't get no better than that.

We took our loot home after the captain chopped up the fish for the meat, for us to take home and give it to my Mimi to cook, (My grandma). (By the way, we only took home the red fish and the flounder to eat. The rest we threw back.) Mimi cooked the best fish I have ever tasted in my life!!!! We had the fish which she lightly breaded, and also had lemon and limes, corn, butter, salt, baked potatoes, and ginger ale. I even got to have some of the flounder that I caught. It was such a great time and I will never forget about it!!!

Your lovable fisherman,
Joshua, 'The Champion Warror'

Sunday, July 8, 2007 5:38 PM CDT

Hi All,

Sam went to the doctor on Tuesday. Sam had a X-ray and after that, Dr. Elrod said Sam's knee was too puffy for him and proceeded to numb the knee up and remove some fluid. There was some blood in the fluid, but it was light colored which was a good sign that it was not too bad of an injury.

Sam had two days of therapy. There was still pain in movement after those days, so he now will have two weeks of therapy but will not be allowed to practice football. If there is a problem after the two weeks, it sounds like he may get a MRI.
Sam still wants to go to practice and watch or whatever. He just loves being around the game.

Joshua's arm still hurts but not much now. We are just letting it be, and hopefully it will mend on its own. He is using it for general use, so it does not seem too bad of an injury.

Joshua has a dermatologist appointment this Thursday. We are going to get the eczema checked out.

Since Joshua is doing so well I am going to see if Dr. Frangoul will let us wait another two weeks before seeing him. It can't hurt to ask... right...?

God's blessing to you, and thanks for being on this journey with us.

Love, Leslie

Sunday, July 1, 2007 5:48 PM CDT

Hi All,

The boys are coming home tomorrow. It will be great to see them. They went fishing in the Gulf with my dad.
I will have Joshua write and tell of his adventures in that.

Joshua did hurt his arm in the process of fishing and is unable to touch his hand to his shoulder. We will check it out when he gets home, hopefully a muscle strain and that is it.

We need prayer for Sam's knee. Sam and Joshua were swimming. When Sam made the turn his kneecap move over.
We are praying it is a little thing and he can still play football. He was unable to walk normal for a day or two. The knee has swollen so he is icing it. I sent him one of his knee braces for support.
He loves his football and has worked so hard in therapy and football practices. We just want him to have this desired of his heart.

We have a doctor appointment for him on Tuesday. I will let you know what happens.

God is in control and I am thankful for that.

God's love and ours,

Leslie

Saturday, June 23, 2007 6:58 PM CDT

Hi All,

Joshua had a good clinic visit this past Tuesday. It was a 'nurse visit' actually. Cassie removed his stitch from the pox biosopy. One stitch has already fallen out. She looked at the pox to make sure there weren't any new ones popping up.

Joshua did tell her about a headache that he has had continually since June 2nd. This headache will make him dizzy at times, especially if he moves too quickly. A sudden stop with the car will cause dizziness also.

She called in Joshua's endocrinologist, Dr. Van Sickle,
to see if the headaches could be the result of Joshua's taper of the hydrocortisone that Joshua is on. Joshua has been on the medicine since November because of lack of adrenal function. They use hydrocortisone to jumpstart the adrenal glands and then taper off to see if they will work by themself.
The doctor said even though Joshua has this headache and dizziness, he does not believe it is the result of the taper. His reasoning is when Joshua got the pox he would have become a lot sicker and would have had zero energy. With us not tripling the hydrocortisone amount (for fever or sickness)
and Joshua doing as well as he did he thinks it most likely something else.

July 20th, Joshua gets His adrenal glands tested and we will know for sure.

The boys make it to Florida. The only mishap was Joshua had to return to us (from the airport checking) and give us all his bottles of cremes, sunstan lotion, body wash. Next time we will check in a suitcase. We had a total of seven bottles in our hands as we lefat the airport.

Prayer needs for Joshua are; the eczema is raging.
Also, the more he does the more methadone he needs.
He is trying to curtail his activity so he does not run out of methadone.

Joy on this journey,

Blessing and love,
Leslie

Saturday, June 16, 2007 9:43 PM CDT

Hi All,

The clinic visit went fine. Joshua was given fluids before the blood work came back. Which we were happy about because when we were ready to leave for home the report still hadn't come back and we would have used half of our day just sitting and waiting at the clinic.

The neuropathy is acting up as it usually does when he gets some kind of sickness. He is on to getting better so he should be feeling better soon on all accounts.

We have a clinic visit on Tuesday to get his stitches out from the biosopy. Before Joshua leaves for Florida, he will get one last look over from Dr. Frangoul.

Once again we are on the upswing. Thanks for rejoicing with us.

The Lord will complete what He has started.

Blessing and love,

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

Thursday, June 14, 2007 7:39 PM CDT

Hi All,

We were able to leave the hospital by 10:30 a.m. today.

Joshua is still considered contagious so he has to stay away from those taking chemo, pregnant women, and small children.

Tomorrow we go to clinic to check his creatine. He was at a normal level today .61. They want to make sure the level is still fine tomorrow. If it is not they will give him fluids to continue to help dilute the medicine that he is taking for the pox. This dilution is helping the kidneys by not making them work so hard

He is feeling fine, eating, and not naping, what more can we ask for?

It is great to be home in the bosom of our family once again.

Joy on this journey,
Thanking the Lord there were no complications,

Love and blessings,

Leslie

Wednesday, June 13, 2007 8:12 PM CDT

Hi All,

The Acyclovir medicine is doing its job on all fronts.

I just found out it hastens the sores to scab quickly.We all know when that happens one is not contagious anymore.
Not all the sores are that way but we are getting there.

Last night, Adele, one of our beloved nurses popped in at the door.(she could not come in) It was so wonderful to see her.

Tonite, when I was getting Joshua some pizza I ran into another caring nurse of Joshua's, Linda. She did not know Joshua was here and told me she felt like she was back four years ago in seeing me.

I took her to Joshua's room, she stood by the door where she could take a peek and say, "Hi" to him.

Joshua's general temperature is 97.3. Today it was 98. I guess he was having a heat wave.

We are still looking to go home tomorrow around lunchtime. He is anxious to get home and be with his brother Sam.

Dr. Frangoul said this should be Joshua's last time being in the hospital. We will receive that. We need to get going on this boy's life.

Thanking God for His faithfulness towards Joshua.

Joy on this journey,

Love and blessing,
Leslie

Tuesday, June 12, 2007 4:31 PM CDT

Hi All,

I always forget about the beeping of the I.V. pump, till I hear it BEEP BEEP BEEP. Between 5:30 and 6:30 it went off four times. I had to get up and call the nurse. It is wearing for me, but there could be worse things happening.

It looks like Joshua and I will be at Vanderbilt till Thursday late morning.

I was told that Acyclovir is an extremely strong viral medicine and that it works the kidneys very hard. Joshua's creatin was up to 1.26 so instead of the medicine every 8 hours, they changed it to every 12 hours. This caused his creatin to go down to 1.00 which they are happy with. They are going back to every 8 hours again. I guess to get as much medicine in him as they can.

Joshua will be coming back to clinic on Friday for more I.V. fluids to make sure the Acyclovir is flushed out. They will decide then if he has to come back on Tuesday before the Florida trip.

Right down to the wire for that boy.

He is having more than usual neuropathy pain most likely because of the pox.

We were able to talk to Anothony, a nurse of Joshua's from 2003. It is always a pleasure to see our nurses.

Thanks for your prayers on this journey,

God bless you all for your faithfulness,

Love, Leslie

Monday, June 11, 2007 8:35 PM CDT

Hi All,

Well, what a surprise for us. Guess where we are??? We are in
the hospital. I can't believe it.

Saturday, Joshua started up with a rash. By Sunday night he was itching and scratching away.

Les thought chicken pox, but Joshua had no fever or real crusty top sores so we threw that idea out. We then thought maybe hives or bug bites.

We were able to get an appointment this morning with his dermatologist; amazingly even the dermatologist and her colleague didn't know what it was. They performed a biopsy on one of the sores on his stomach then finished the job off with a couple of stitches. They were going to send it off to a lab San Francisco for evluation

Joshua and I then went to Vanderbilt for school-type testing and simply stopped in to say a quick hi to Dr. Frangoul. He put Joshua in a room and took one look at his body and said without hesitation, "You have chicken pox." He left and came back in ten minutes or so and told us that Joshua had to be in the hospital for at least two days; more if new sores keep popping up.

Dr. Frangoul said the dermatologist most likely didn't realize it was chicken pox because she deals with adults, not childhood problems like the chicken pox. He called the dermologist
to let her know what the rash was and not the bother to send the biosopy for evluation.

What we found out was the very young, the elderly and transplant patients, run a risk of damaging their liver and lungs to the point of failure. There is also a risk of pneumonia. Joshua is considered in the gray area of risk. Because he had lung and liver problems before this. The infectious disease control doctors thought it best to have him in the hospital.

It looks like the headache that he has been having lately is part of the symptoms of chicken pox.

He is on fluids and I.V. Acyclovir. Acyclovir is a viral medication. Joshua was on this same medicine in pill form all during chemo and three years out of transplant.

we know with Joshua having had a bone marrow transplant that he needs to get his childhood shots all over again. I am sure that will be happening soon.

Unfortunately he is on his third I.V. The first one they put in him, the medicine burned when going in. The second one was bleeding when not in use. The third one looks like a winner. Joshua wasn't happy to have to endure 3 different attempts.

Thank-you for your continuing prayers and support for Joshua; it means a lot to us.

Continuing in His joy on this journey.

Love and God bless you all,
Leslie

Saturday, June 9, 2007 1:33 PM CDT

Hi All,

We have had a pretty peaceful two weeks. Joshua's only new problem was a head cold that was not going away. A continous headache for four days and naps put us in the clinic a week earlier than our orginal scheduled appointment.
We were given a prescription for Levaquin and it has totally helped in just one day.

Joshua now weighs in at 138.4. He is slowly climbing up the scale, so we should see 140 lbs. in two months. Good for him.

The blood test came back normal for B-vitamin induced neuropathy. Dr. Frangoul just shook his head and said (more to himself), "I just do not understand peripheral neuropathy." Well, I wonder who really does???

I now have the adult neuropathy doctor's phone number in my keeping. I will be checking on an appointment to meet this doctor this coming Monday.

We are all enjoying the summer though it is more busy than I would like.

Thanks for checking in.
Joy on this journey.

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

Saturday, May 26, 2007 10:00 PM CDT

Hi All,

Happy graduation day to Joshua!!!!!!!! What a glorious day for our Champion Warrior. He was thrilled to see so many people at his graduation just for him. He told me later that he could not keep from smiling.

Joshua, the class chaplain, gave a speech on right is right and wrong is wrong and do not blur the lines. He also exhorted his classmates with Joshua 23: 6-8.

I had a good cry this morning with Les as we realized once again how gracious God was to us in allowing Joshua to live.

We had a full house of people who have loved Joshua over the years. Some of his special high school friends from last year graduating class, (the class he started out with) were there also. Joshua was just smiling all day long. I was so happy for him. We all were so happy for him.

"This is the day that the Lord has made; I will rejoice and be glad in it".

Other exciting news we just received is there is now an adult neuropathy doctor at Vanderbilt. I was checking Tennessee for neuropathy doctors and all I could come up with is one in Memphis. This is definitely closer, wouldn’t you say?

Yesterday, Joshua had three methadone pills. Today, he needed only his regular amount which now is two daily. Our prayer is that he wouldn't need any.

There also is a blood test available to see if he is too high or low on a particular B-vitamin. He will be getting that blood test on Tuesday. We pray that something shows up that can be easily fixed and the pain would stop. I would be SO thrilled to see him not in pain. So thrilled, you just don’t know how it hurts me to see him in pain.

Joshua believes this is his year for healing from neuropathy because it is 2007 and seven means completion. Won’t you join us in prayer agreement for Joshua.

Thank- you for all your support during these many years for Joshua.

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

Wednesday, May 16, 2007 9:09 PM CDT

Hi All,

If you have not checked in for a while I did write an update on the 12th of May.

Well, we followed Sisse's advice and worked to get the graduation pictures up. So....... click on pictures and enjoy.

Joshua has his school play this weekend. He is the king in the Temptest. I am doing the old-age make-up for Joshua and another boy.. It will be fun.

My parents are driving up from Florida on Saturday. It has been almost a year since we have seen them.
They will be here for Joshua's graduation.

His joy on this journey,

God bless,

Leslie

Saturday, May 12, 2007 11:26 AM CDT

Hi All,

Happy 23rd wedding anniversary to Les and me, today is 23 years! Yea for us....

Joshua's clinic visit went well. He gained 3/4 of a pound in six weeks, Dr. Frangoul was not impressed. Well, at least he did not lose any weight. Joshua's blood work was normal except for two things and they were close to normal. that is a Praise the Lord.

We were able to make an appointment to come back in six weeks. Dr. Frangoul is moving us up two weeks for the second time in a row. Next time I will ask for a two month appointment.

Joshua's thyroid blood work came back beautifully so they will keep him on the same dosage of Synthroid.

For the last month we have been doing a hydrocortisone taper to see if Joshua's adrenal glands will be able to work on their own. They have had him on the hydrocortisone for 5-6 months at a steady dose. Now the taper to see if the adrenal glands will kick in. They somtimes stop working when one has been on steroids for a long period of time. Anything over a week is considered a long time so Joshua's four years most assurdedly meets the mark.

After the taper is completed and he was able to handle that with no dizziness etc. then they will give him a adrenal gland test to see how they are working and if he still needs any hydrocortisone.

We went to see a dermatologist this past Friday. Joshua has dermatitis of the skin on his face. Layman terms, dandruff of the skin. He has four different thing to do to his face, three of them special cremes. Also a special steroid creme for flare-ups. Les remarked,
" Just like a woman." He also has special shampoo for everday use and a steroid one for flare ups.
For the eczcema on his body he has a special ointment called Elta, the melting moisturizer. After he showers he puts this on before he towel drys. Then he lets it soak in and then he towel dries. I think of most 19 year-old young men and how they do not have to mess with all of this and I KNOW Joshua would love to be like them.

I also wanted the dermatologist to check Joshua's back for any strange looking moles which she did. Joshua does have one irregular shape flat'mole'. Our next visit he will have it removed and checked for cancer. I am believing it will come back negative.

Joshua has had a difficult week this past week with only one methadone a day.( waitng for the new prescription to kick in) He also was out of Ritalin for a couple of days ( he failed to mention that to nurse Cassie so the date on the prescription was later than he could have used.) so he was DRAGGING... We can most assuredly see a difference with Joshua taking the two meds. The pain level is higher without both meds. So, he did more sleeping and less moving this week. He will be back to two 5mg. methadone and 40 mg of Ritalin daily. I hate it that he has to take these meds but nothing else works. Even with this he tells us he is still in 24/7 pain; it is just made bearable with the medicine.

Joshua still manages to do things and then recuperates when he can, usually the next day or two.

He is looking forward to the excitment of graduation.
This is a good thing and we are all SO happy for him.

God will finish what He has started in Joshua.

Sam has been done with therapy for two weeks. He is fully practicing with the team. He is still occasionaly putting ice on it. This Monday he is going to see the doctor. The knee still looks bigger than the other. Sam thinks he might need to get some more fluid drained out of it. We will see..........
School is coming to an end and everyone is ready for a break.
Love,
Leslie, Les, Rebecca, Sam,and Joshua,Our Champion Warrior.

Saturday, April 28, 2007 8:19 PM CDT

Hi All,

Joshua has been doing quite well for Joshua. As long as he gets his sleep. Thursday night he went to bed at 11:00pm. and slept till Friday at 1:10 pm. No one was at home to wake him so he just kept on sleeping. Amazing to me..

This past Thursday in a little aged Presbyterian church in downtown Franklin, Joshua completed his 'Oral Defense' on the 'Legacy of George Washington'. He worked very hard on the paper and the oral presentation. He answered all the questions in defense of his paper that the three teachers asked of him.
When he was finished with the teacher questioning his class of 13 gave him a standing ovation. He was grinning ear to ear. It was a special day for Joshua and us.
Anyone who wanted was able to go, though there was standing room only. We were blessed that Sisse Pfieffer came early and saved us seats.. Thanks Sisse!

Tomorrow is Youth Sunday at church. Joshua is playing the bass guitar with the youth band.

He had his eye check up from the 'Swifter incident' and all is well. In fact his eyes are basically the same as last year as far as seeing and the cateracts are concerned. That is a "Praise the Lord"!
This Friday, May 4th is our clinc visit. I think Dr. Frangoul will be happy with Joshua on all accounts except his weight.
Here is a little story of Joshua and his eating.
A couple of weeks ago all of us were eating lunch and Joshua was walking on past us. I asked him this question, "Joshua when are you going to eat?" He covered the sides of his head and said, " I KNEW you were going to ask me that."

God continues to finish what He has started in Joshua.

Joy on this journey,
Blessing and love,
Leslie, Les, Rebecca, Sam, and Joshua our Champion Warrior

Tuesday, April 17, 2007 8:35 PM CDT

Hi All,

Joshua had a red letter day in the driving department today. He drove himself to school and back AND.. drove himself to his CAD class and back. I was with him just in case he would have been to tired to drive at any point.

DRUM ROLL PLEASE.........................

JOSHUA PAST HIS GED WITH FLYING COLORS!!!!

HE IS IN THE TOP 33 PERCENT OF HIGH SCHOOL GRADUATES.

Thanking God that Joshua passed and this chapter of his life is finished. Now on to more learning.

As my mom says,"Learning is the greatest game."

Thanks for all your prayers for Joshua.
God WILL complete what he has started..Amen..
Blessings and love,

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

Saturday, April 14, 2007 6:15 PM CDT

Hi All,

We have had an interesting week at the Nienow’s homestead.

Easter Sunday at church I was beginning to feel ucky. I ended up having a slight stomach 'flu' for a couple of days. Joshua and Sam had it a little last week and blessed me with it.

Sam woke up Easter Sunday with the start of hives by the time he was home from church it was full blown on his back and stomach. thenit went to all over his body. Welts the size of quarters were merged together and created an awful looking design on his body. Calamine lotion and Benadryl helped with the itching somewhat. Each day the spots transferred to a new area. By Tuesday I picked him up from school and his face was covered with red dots, it looked like heavy duty acne. I dropped him off at the dentist and went and got a book for Sam. When I came to pick Sam up more hives crowded his face plus his stomach was covered with welt style hives. I dropped him off at physical therapy and went to a local dermatologist to make an appointment for Sam, which we got the next day. Les picked up Sam from therapy and brought him home and all the spots had miracleously disappeared in less that three hours! Not a spot on his chest or face. The next day still no spots on this body just redness on his feet so we canceled the appointment and told them we had nothing to show them all the hives were gone.

Joshua has had his usual week of ups and downs. But Thursday was a little different. He was turning off a light and a broom fell forward, as he rose to get it up another more pointer handle broom (Swifter) fell and jabbed him in the right eye tearing at the skin in the inner corner of the eye and causing a bruise in the corner of the eye itself. His eye is not a pretty sight. Because he had hit the eye head on he caused surface damage to the jelly tissue of the white part of the eye and the cornea. Needless to say screaming and crying ensued. Sam being home with him alone did the best he could to care for him, and did a fine job.

Les and I came home and I took Joshua to emergency at Williamson Medical Center. NO ONE but us was in the waiting room. We were seen right away. We were out in an hour and a quarter. We saw an ophthalmologist on Friday the next day. He told us what was wrong with the eye and we will see him in two weeks to make sure the eye is healing properly. We just have to put drops in Joshua's eyes four times a day.

It has been hard for Joshua to read, and the eye is hurting so he had not read anything. I believe his eye is just worn out and needs time to recuperate.

We are doing well now and enjoying a visit with longtime friends Tom and Karen Luckey from Wisconsin.

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

Monday, April 9, 2007 11:09 AM CDT

Hi All,

Joshua is doing quite well lately. He has gone to school this past week and even went to the grocery store for me. I don't know the last time that happened.

The coughing and hacking Joshua has had came back.
Dr. Frangoul wants Joshua to use the inhaler to see if that helps. He will use it for two days and then if not breathing any better we will go to see Dr.Moore, the lung doctor for breathing tests.

We continue to wait for the GED testing report. One week down and one to three weeks to go.

We will let you all know when we know.

Blessing and love on this journey,
Leslie

Tuesday, April 3, 2007 8:42 PM CDT

Hi All,

Joshua was able to take the whole GED test on Saturday. What a Praise the Lord that was. He took Ritailn three times for neuropathy pain and to stay alert. He was in some bad leg pain when he came home and was able to take a methadone then. He finished the test I am so thrilled and excited about that.

In two to four weeks he will find out how well he did. I know he did well and passed it.

Sunday was a busy day for Joshua and having two busy days in a row wore him out. Monday he hardly moved, he just had all sorts of body problems. Today, he is doing excellent he was able to go to school and his CAD computer class in Spring Hill. I still do the driving, since sometimes he gets tired out or has taken a methadone.

Joshua had no coughing yesterday not much today so we are almost done with the chest/lung infection.

Joshua is working on his thesis paper on George Washington. I am proud of him for doing it even though he does not get graded for it because he is not enrolled in the school. He is doing it because he wants to.
He is my Champion Warrior.

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

Leslie

Friday, March 30, 2007 11:20 AM CDT

Hi All,

Joshua is doing better. Neuropathy is back to 'normal'
if you can call it that. His breathing is still a little difficult and he has to stop sometimes to catch his breath just in general walking or stair climbing.

Our prayer request for Joshua is that he continues to get better, back to better than normal for him.

He is taking his GED Saturday, 8:00-4:30. Pray that his body holds out and the neuropathy pain will not stop him from taking the whole test. The test consists of five parts and he would like to do all parts on Saturday if his body allows

Thanks and love to you all,
Joy on this journey,
Leslie

Tuesday, March 27, 2007 10:57 PM CDT

Hi All,

A quick update here. Joshua continued to have a fever today, a hard time breathing and feeling sore to touch.
So... we had to come to Vanderbilt for a chest X-ray and a visit with Dr. Frangoul.
Joshua has an infection in his chest and is now taking an expensive antibotic (thank God for insurance). He is back on the inhaler to open up the breathing for him.
When Joshua gets a cold it it very hard on his lungs having lost part of one lung and having one bronchial tube completely shut off.

Sam is getting a little sick now so he needs your prayers too.

God bless you tonight,
Continuing in His joy,
Leslie

Monday, March 26, 2007 3:04 PM CDT

Hi All,

Joshua had a four star clinic visit this past Friday which even included a hug from Dr. Frangoul. Joshua's weight has increased to 140. 'The Good Doctor' said Joshua looked fantastic. He even gave us the go ahead for a clinic visit six weeks from now up two weeks from the usual four week clinic visits.

Joshua went to 'Aquire the Fire' for youth in Nashville with his youth group. He was a group leader and we were very proud that we was able to be responsible for three kids. You know that was so good for him!

We hosted three of the 'Aquire the Fire' (Teen Mania) girls at our house during the weekend. We were the place to 'crash' for them. Sunday, something ran amuck and instead of them leaving Sunday we now have them plus two yound men staying with us until Tuesday night. Along with my kids I now have eight children. The guys do not eat as much as my Sam, good thing.

We went to the park and Joshua was able to enjoy throwing the football and the hanging out time and eating ice cream with the group.

Today. Joshua's body started to act up. Starting with major congestion, a fever of 102.8 and extreme neuropathy where I have to help him to sit up in bed and then hold on to him as he makes his way to the chair. His legs are in so much pain that he has not stood on his own today.
One and one-half methadone hardly takes the edge off the pain but I can't give him any more till four hours have past. ( I gave a little at a time which is not good I should have lumped them all together) 800 mg. of Advil and half of a hour later the fever went up to 103.4.
We have to triple the hydrocortisone since his adrenal glands don't work at this time.

I know he will be fine this just cuts into his young adult life so. Everyone is out together have fun and he has to be home. I don't like that for him. It is hard to get his life going. I know God is faithful and he will see Joshua to the finish line of great health.
Joy on this journey,
Thanks for your support,
Love and Blessings,

Leslie

Monday, March 19, 2007 8:15 PM CDT

Hi All,

Just to let you know, whatever Joshua had had on Thursday it was gone on Friday. Thank-you for upping the ante on your prayers. (Hi Natalie) God honored them.

This is Joshua and Sam's 'Spring Break' they are enjoying sleeping in, staying up late and just hanging out with each other.

Joshua is signed up for the March GED testing. I believe it is on the 31st. I know he needs prayer for his physical problems for the testing. Mainly for the neuropathy, which makes it hard for Joshua to sit and stand for long periods.

Joshua has a clinic appointment Friday with Dr. Frangoul, we are expecting a good report.

His joy on the journey, how else could we do it?

God's love and ours,

Leslie

Thursday, March 15, 2007 10:08 PM CDT

Hi All,

Joshua was doing pretty well for Joshua this last week and one-half. He even drove Sam to school and picked him up which helped me a lot.

Last night and today was a horrible day for him. He had a difficut time getting to sleep last night and had to take extra methadone.
This morning he had three bouts with diarrhea in an hour along with nausea, dizziness and his body was sensitive to touch.
He was so miserable, he said he had the same feelings as when he had leukemia and when he was at the Ron MacDonald house.

He slept a lot today. Felt somewhat better tonight yet still big on dizziness and shaky inside his body.

I feel like this is an on going saga. I am glad the Lord knows what He is doing because with times like these I have to really wonder. Please continue to pray for Joshua's complete healing and that these extra bad days would never happen again.

We continue to love the Lord and bless Him for His goodness to us. Joshua is alive; what a blessing.
God is good all the time and all the time God is good.

His Joy His journey,
Love, Leslie

Monday, March 5, 2007 9:52 AM CST

Hi All,

We almost had another night at Vanderbilt. Right before we were going to leave Joshua felt hot so I took his temperature, it was 100.4. I told them about it so they took his vital signs. ( When a child has a 100.5 fever at home they want us to call Vanderbilt) His heart rate was up also.The nurses walked out of the room to check with the doctor. As it took a little while we were wondering what was going on. I decided to find our nurses and find out what was happening. Well, they just got the call back from the doctor and the doctor was o.k. with us going home we just had to watch him.

At home the fever went to 100.8 so I called back to inform them. I told them I could watch Joshua at home as much as they could watch him there and if he became worse I would let them know.

By the morning the fever was gone. He has what I am still getting over, this just seems just to hang on, this upper respiratory infection.

Once again we are on the mend he should be back in should by Wednesday. He is in a play and needs to be there if at all possible.

My wisdom extractions went well. After being on the couch 9:00 a.m.Thurdsay till 7:30 a.m. Friday morning, I was fine. I did wear the ice pack around my jaw because my cheeks felt hot but no pain. Thank- you Lord. Having to help Joshua on Friday/ Saturday in the hospital I did not need to concern myself with me.

Joshua is sleeping now which is the best thing for him. Our nurse Cassie called to see how he was, that blest me.

God will finish the work He has started,
Joy on this journey,
Blessings and love,

Leslie

Saturday, March 3, 2007 10:48 AM CST

Hi All,

Joshua had a fever of 101. last night. He also needed some oxygen.

This morning he is doing better, no fever and no oxygen. Still coughing and hacking away but nothing in the lungs. So.. they said we could go home today. They are giving him the antibotic Levaquin. We will follow up with Dr. Frangoul next week if the coughing does not subside.

We are just waiting for our discharge papers from Vanderbilt and off to home sweet home.

God bless you and thanks for checking in on our journey.

Leslie

Saturday, March 3, 2007 0:27 AM CST

Hi All,

If you would have told me I would be at Vanderbilt a week ago I would have said "You're crazy." Well here we are sliding into old patterns at the hospital as if we never left.... strange.

Joshua got in his room at 3:00 p.m. That is about a fourteen hour wait... Good thing he had his own room in emergency area. We were able to see our old neighbor,Karen, who is a nurse in the children's emergency.

Les, was a trooper though, he did not fair so well as far as sleeping went,put it this way,it was a hard chair for fourteen hours.

Joshua seemed earlier to be doing o.k. to me, but now he has a low grade fever. They will not give him anything just to see if it goes full blown. He said he just is not feeling well. I guess then the hospital is a good place to be.

He got to see one of his favorite nurses, Adele. He thinks she hung the moon and can do no wrong. She is not his nurse tonight but is with the transplant patients.
She has come to see him three times since he has been here yesterday. Just seeing her makes him feel better.

Pray for health, an abundance of it for Joshua.
Pray for the neuropathy to leave once and for all in Jesus name.

Thank- you and we love you all,
Joy on this journey,
Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Friday, March 2, 2007 8:46 AM CST

Hi All,

It has been an interesting 24 hours at the Nienows.
I had three wisdom teeth pulled yesterday(one was already pulled years ago). I was 'out' on the couch all day with an ice pack around my face.

Joshua started to feel sick on Tuesday. On Wednesday he did not attend school or church, he was feeling head congestion and a sore throat. Thurday, Les took Joshua to clinic. He was dehydrated and they gave him some I.V. antibotics to help with anything he might have. Les and Joshua came home and by late nightfall 12:00 - 1:00 a.m. Joshua had a 103 fever, so Les drove him to Vanderbilt emergency. They are still in the emergency waiting area now because there are no beds available. One of Joshua's nurses, Adele, came and visited Joshua in emergency. that was great.

I am going to change out with Les so he can go to work.

Last week was Joshua's one year from being hospital free. He had made a whole year of no hospital stays... we are making progress. Thank-you Lord.

I will write later tonight.

Glad to have God on this journey with us.
BLessing to you all,

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

Wednesday, February 21, 2007 9:43 PM CST

Hi All,

I have been sick with an upper respiratory infection this past week, consisting of congestion, off and on low grade fever, sore throat and body ache, I wear out easily but wanted to let you know how Joshua is doing. I can’t tell you the last time I was sick like this. I know it was before Joshua was diagnosed in 12/02 though. I told Les I would rather be a caretaker than be taken care of. I am not having a lot of fun, but, it will pass.

Joshua had a good clinic visit last Friday. He is maintaining his weight of 143. He does have an infection behind his ear so…. Twice daily we have to mix to creams together and put it on the infection.

We have to get documented paperwork on the neuropathy Joshua has for the GED testing. Just in case he needs to get up and have a break before the schedule break time during the testing. Dr. Frangoul and Nurse Cassie are working on getting the paperwork together for us . It will now be March when Joshua takes the GED test.

This has been a good school week for Joshua. He has pushed himself driving wise today so I would not have to drive and get them at school today.

Besides me, the family is doing well and as always thanks for checking in and praying for us. God is faithful and we are thankful for that. Ready to finish this journey and start a new one.

God bless and love ,

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

Monday, February 12, 2007 5:52 PM CST

Hi All,

After having a couple of good days on the medicine regime ,we, doctor and us decided to go back to the Lyrica because Joshua was still taking two methadone a day.
The taper is on once again and should be finished by this Thursday.
Joshua is just lately hurting and is still taking two methadone pills most days so sometimes I think, “Who knows anymore?”
This morning he told me he his legs feel better after he takes the Ritalin.
I e-mailed our doctor and they said he could take the 15mg in the morning and 15mg four hours later. Today he only took one methadone. So we will see. I feel like we just exchange one pill for another and do not get too much accomplished. At least he can drive though.

Joshua has not been attending school very regularly because of the leg pain. We do have some super news concerning the GED though.

Joshua took two placement tests to see what books he would have to study from. The first test is through 8th grade which he past it with flying colors. The second test was 9th - 12th grade. Joshua did superb getting a 12th grade 9th month on all categories, the highest rating. He was told he did not have to do any studying and could sign up for the pre-GED.
Another Praise the Lord is he was able to take the whole four hour pre- GED testing at one time with out too much pain. The next day though he did suffer because of pushing himself. Joshua passed all five sections with higher than average flying colors. In the language arts/reading section he only had one wrong, the tester could not believe it. She said she never corrected any language/reading test with only one wrong. She just was so amazed at his reading comprehension. Well that was an awesome boost to Joshua’s morale.

We now sign up for the eight -hour GED testing. He wants to take it all at one time. I will let him do what he thinks he can do. We are hoping to get in next week, it is on a first come first serve basis. It is given once a month at Columbia State Community College in Franklin and Columbia.

We need prayer for this continual leg pain and the passing on the GED testing.
God is SO good and faithful to us I am just in awe at how much He loves our family.
Blessings and love to you all,
Joy on this journey,
Leslie

Saturday, February 3, 2007 4:25 PM CST

Hi All,

The doctor visit went well. The extra Gabapentin/ Neurontin that he took only causes drowsiness, thank the Lord.

Funny though, Joshua did not feel any extra. Everyone thought that was amazing.

Joshua’s being on the 15mg of Ritalin his made his appetite drop. Joshua has lost three pounds in ten days and now weighs 143. the doctors are ok with him losing some weight- just not too much, so we will just watch the numbers.

Joshua drove himself and his brother Sam, to church on Wednesday. He also played bass for the youth night. He paid for that activity the next day being more sore than usual.

Other than the Wednesday night drive to church I still am driving Joshua around. Joshua is nineteen and I amazed at how much I am SO INVOLVED in his everyday life. I do look at it as an extra blessing because I love being with him and I know we are so very blessed to have him. On the other hand we do have to work on moving him into independence and being able to take care of his every need. This is definitely a journey that we did not know we signed up for.

Joshua was asked to speak at a cancer fundraiser called Relay for Life. We wrote a two page ‘speech’ covering the time he learned abut the leukemia diagnosis till how he is doing now. He did a fine job. He has another ‘speaking engagement’ for the Relay for Life this time to be given to a young group of people.

I think we are on the upswing. The medicines seem to be o.k. now. Today Joshua only took one methadone. On a 'bad' day last week he had taken four! We will look the medicines over once again on our next doctor visit Feb. 16th.
For those of you following Sam’s recovery. Two weeks ago he went back to the doctor where they used the needle, again, this time to removed 60cc of liquid because the kneecap still not properly locaated. He now is suppose to ice his leg twice a day.
Tuesday and Thursday he has two hours of therapy. He is not running yet, but doing well.

Happy day to you all,
God is faithful on this journey of ours,
Thank-you for your prayers
God bless and love,
Leslie, Les, Rebecca, Sam, and Joshua, our Champion Warrior

Monday, January 29, 2007 8:27 PM CST

Hi All,

Joshua had a great Sunday, driving himself to church, playing the bass guitar in the band, and driving himself home. Remember, he had not driven at all in the past week. After he was home he fell asleep on the couch as I was playing the piano. I was amazed that he fell asleep with the amount of mistakes I was making. He had to have been really tired.
Joshua was up at 2:00a.m. Monday morning because of leg pain. He even tried to watch a movie to distract himself from the pain. It was to no avail, he ended up taking a methadone and even at that it took one and one-half hours to work. Needless to say with rising that early he was tired today, but was doing better later in the afternoon.

I e-mailed the doctor and we talked about Joshua’s taper. We realized I was reading the directions incorrectly and was giving Joshua three times the Gabpentine/ Neurontin that he needed.
I was NOT happy with myself. I thought Joshua’s pills were 100mg. but they were 300mg. We are blessed that Joshua had no side effects from it, and the extra in that medicine just flushes out of the body from what I understand. Tonight, Joshua is starting 200mg. Lyrica two times daily and continuing the 1200mg of Gabpentine three times daily since he has been on it a week with no adverse effects. He also takes 2 methadone pills a day. The good news is that he is awake the bad news is he is in much more pain.
We do have to go to clinic tomorrow because they want to see all of our pill bottles and make sure we are doing everything correctly.

This week our family is praying up a storm for the tapering of the Lyrica to work. Please join us in this to our Heavenly Father that He would have mercy and grace in this situation.

God is faithful,
Blessing and love,
Leslie, Les, Rebecca, Sam, Joshua, Our Champion Warrior

Saturday, January 27, 2007 8:26 AM CST

Hi All,

We have been on the taper of Lyrica/ Gabapentin since Monday.
Dr. Frangoul and our nurse Cassie are working to get the medicines to a point where the pain level is acceptable to Joshua.
The good news is Joshua is taking the 15mg of Ritalin just in the morning, not in the afternoon and is NOT napping. He is not Mr. Wide Awake but not dragging too much either. I wonder if it is the Ritalin or the Lyrcia taper. I guess we'll find that out down the road a bit. One side effect of Ritalin is loss of appetite. Yes, you guessed it, Joshua is not eating much. He told me it just isn’t as interesting as doing other things. I will have to watch this; I can at least make sure he is eating well when he is eating.

The pain is still continuous, and it starts early in the morning. Because of him taking methodone in the morning, I've needed to be Joshua’s chauffeur this week, which he is not pleased with. He said he feels he has less of a ‘life’ now than when he was taking naps. When I reported this to our doctor team, they worked out a change of the taper with our clinical pharmacist.

We are not going to continue on the taper of Lyrica. We will keep it at 100mg in the morning and 100mg at night. We are to increase the dosage of Gabertin from 300mg to 600mg in the morning, since that is his worse time. When I told this to Joshua he said it is his worse time because he has not had any methadone yet. We will see what happens over this weekend.

Please pray with us that the taper would work and Joshua will be able to drive and be o.k. with the pain level of the neuropathy. Or better yet; let's all agree together that this neuropathy would be completely gone in the name of Jesus.

On a lighter note, Joshua and I saw Anthony, one of Joshua’s nurses while he was being treated for the cancer back in 2003. He was in the clinic on Monday when we stopped in to have a quick talk with Cassie about the medicine. Joshua lit up with excitement. While Joshua enjoyed being surrounded by so many caring women, he thought it was great to have a male nurse as part of the team. It was fun to see and talk to him again.

I want to say “Hi.” to all Joshua’s nurses who still read this. That means you, Adele… Adele would you tell all who cared for him, Linda, Yo, Anthony and the others that we think of everyone often with happiness. You all were so cheerful and good to us and we can never thank you enough. Everyone of you are a blessing.
Just know you will always hold a special place in our hearts.

Enjoy your Saturday, we plan on it.

Thanking God that He is faithful,

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

Tuesday, January 23, 2007 1:28 PM CST

Hi All,

We were pleased with Joshua’s doctor visit this past Friday.

This was the visit they took Joshua off the last three medicines that had to do with having leukemia. What excitement I feel…………… Thanks be to God.
The first one was Acyclovir. This one fights against chicken pox. With the bone marrow transplant Joshua received a new immune system, (like a baby) and now he has to start all over with his immunizations.
Until that time arrived, which is now, he had to take Acyclovir.
The second was Dapsone to make sure he wouldn’t get a certain type of pneumonia.
The final medicine was Vfend short for Voriconazole. This is the medicine he has been on since February of 2003. It was to protect Joshua from getting a return visit of the nasty fungus, aspergillus. That was the fungus that destroyed his lower left lobe of his lung, which later had to be removed.
It also scarred up his left bronchial tube which has had to be stretched open a couple of times because of the scarring.

By the grace of God, Joshua has made it. A little over four years it took, but he made it. Dr, Frangoul is not concerned about a return of leukemia. We sure love that!

Our continue concern is to keep Joshua awake and to get the neuropathy under control.
The Ritalin does not seem to be working. Joshua is up to 15 mg. twice a day up from the original 5 mg. twice a day. He still does not have that, Wow! I’m awake! attitude.

They are tapering Joshua off the Lyrcia ( very sleepy neuropathy medicine) back on the Gabapentin, the less sleepy generic for Neurontin, Joshua’s original neuropathy medicine. They are hoping this medicine will control the pain enough to where Joshua can stay on it and be awake. Lyrcia just seems to be a better pain controller though. We need your prayers that this change will work. It will give Joshua a much better quality of life because he won’t be as tired all the time. The methadone and Nortriptyline will be the last of the sleepy medicines to work on. Nortriptyline is taken at bedtime, so that can’t be too much of a hindrance for Joshua.

Still on the journey, but we can most assuredly keep singing the old hymn, I see the light…. I see the light….

God is faithful and we are blessed by that.
Love,
Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

Tuesday, January 16, 2007 8:49 AM CST

Hi All,

Last week, Joshua missed Monday, Tuesday and half of Friday school, due to tiredness and neuropathy. We decided to start him on Ritalin on Sunday. Today, is his first day of school with the Ritalin. It is a long day for him, if the medicine keeps him awake today, then I believe we have found something to help Joshua till he gets off some of the medicines that make him tired.

Joshua's blood testing for his thyroid came back low. Funny how it was perfect a month ago and now it is low. They up the Synthroid by one-half a pill. Joshua will get retested in February. It takes four to six weeks to see the change of medicine in the blood.

Sam's therapy is getting harder and longer. One and one-half hours and he is sweating. Two days a week he had football conditioning. He can bike, work on the stomach and arms. The conditioning is at the same place his therapy is which is good we like it that his therapist can keep an eye on him.

Joshua has a clinic visit on Friday. I will let you know how it went.

God is faithful,

God's love and blessings,

Leslie

Saturday, January 6, 2007 7:51 PM CST

Hi All,

Happy New Year! I trust you have kept all your New Year’s resolutions so far.

Sam’s swelling on his knee has gone down enough to start therapy. He can walk down the stairs normally again.

Joshua had a clinic visit yesterday (Friday, Jan. 5th) His weight is now 147.8. We were all impressed. The Christmas eating even got Joshua this time.

Joshua has been losing hair for the last 6 weeks or so. Especially on the sides of his head, his hair is thin and real short compared to the top and back. His hair just looks weird. That is one of the side effects when one is on Synthroid. We were told his hair starts to get better in 8 weeks or so. At least there is a reason.

Joshua started school, and we are back to the naps once again. Part of the problem is he will go to bed at a decent hour but lie awake for an hour or more. Then be draggy in the morning. We were going to try a sleeping pill but we decided to try the Ritalin. Dr. Frangoul told me it is not the long lasting Ritalin and the amount is what would be prescribed for a five year old. The Ritalin is out of the body in four hours. Joshua will take it at 8:00 a.m. and 12:00a.m.
This should help Joshua be awake in the morning and be sleepy at night. We will try a ten day dose and see if it works. If it does, Dr. Frangoul will write our insurance to see if they will cover it.

Joshua has been itchy and hard of seeing in his eyes. They did a quick eye test. The cataracts are still small, that is good. They did a tear test. The right eye is fine. It scored a 15 on the test, that is normal. The left eye scored a 0, no tears. That is why it is scratchy and needed to be rubbed all the time. Eye drops will take care of that. They also have some blood work done for endocrine testing just to make sure all the numbers are normal.

We are looking into some psychologist testing for school at Vanderbilt. They have psychologist working with the cancer patients/survivors to help them with their particular school difficulties.

Dr. Frangoul okayed Joshua going under general anesthesia for the wisdom teeth removal.

“You also need to get Joshua’s eyes checked by an ophthalmologist, not a mall doctor.” Said
Dr. Frangoul.

We will go back to the clinic in two weeks so they can keep an eye on Joshua. Here I thought we would be getting off some medicines and maybe start seeing them every three months, Oh well. I know we will get there, just a matter of when.

Thanking God that He knows all we are going through, and He is faithful to complete what He has started.

Thanking God for you and your prayers. You are all special.

God’s love and ours,
Leslie, Les, Rebecca, Sam, and Joshua, Our Champion Warrior

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