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Saturday, July 7, 2007

Hello everyone,

 

Everything is going great.  I had my one year bone marrow biopsy in May and received good results in June; it showed no leukemic cells and all donor blood type.  Over the next 4 months I am going to be getting immunization and vaccination shots similar to the ones an one year old gets.  I am back at work and everything is starting to feel pretty normal again.  We are looking forward to a family reunion and going to Walt Disney World some time later this year.  Have a great summer!

 

Thanks for everything,

 

-Sonny

 

Monday, Arpil 30, 2007

Hello Family and Friends,  

I apologize for not keeping the site up to date!  Everything is going really well!  I feel great and I have been spending a lot of time at home with the family.  Last weekend we built a big sandbox out in the back yard for the kids to play in, they spent the entire day in it.  Pat and Jack came over to watch the kids to give Stacey and me the opportunity to go out and we finally went out to eat and ate inside a restaurant for the first time in 10 months with some friends of ours.  I have a Bone Marrow Biopsy scheduled for May 23rd, 2 days before our 11th wedding anniversary!  I am having it a month early because my doctor will be out of town for the month of June.  After that I think my doctor visits get adjusted to 2 or 3 times a year versus every 4 weeks.  I really appreciate everyone's thoughts and prayers and all of the letters and cards I have received over the last year.  It meant a lot to me.

-Sonny

Saturday, February 10, 2007

Everything is going well and I am going to the doctor once every 4 weeks.  I am slowly tapering my medications and am down to only three medications.  I am not having any problems and am feeling really well.  The kids are all stll doing great.

Sunday, December 10, 2006

Finally, all the children are well!!  For the past 2 1/2 months Thomas and Jonathan have had strep throat and multiple colds.  We finally decided in November that we would take Thomas out of preschool to cut down on our exposure.  Knock on wood, Lauren hasn't missed a day of school yet.  It seems the younger they are, the more they are sick just because they are being exposed to these viruses the first time.  I have tried to go grocery shopping when the boys can stay at home, given the children vitamins, made sure they get plenty of sleep, and we eat super healthy.  This is all I can do.  Needless to say, it has been busy at home trying to keep the boys occupied and stimulated.  Sonny is doing relatively well.  He caught the cold that we all recently had, despite how careful we were and it is taking longer for him to get over it.  He has been going into work for sales meetings on Monday and working some from home.  He enjoys working and says that home life can be more stressful (no kidding :).  We are in the process of closing in his office with french doors so he can have his own space that is quiet and germ-free.  

      The last doctor's visit, they were happy with his progress and his counts had come back up.  They stopped his steroids and said he may get a flu shot the next visit right after Christmas.  He got his Hickman catheter removed 2 weeks ago  (the IV in his chest) and I took out the stitches today.  So, with the exception of being tired and his stomach bothering him at times (side effects of the steroid taper), he is starting to feel more normal.  Pray for continual healing and harmony in his body with Christine's stem cells and that he is cured.  

     I would like to thank you all for your prayers, concern, meals, love, and encouragement since last February 18th.  Now that things have slowed down with Sonny being home and not downtown, I have had time to think about what has actually happened over this past ten months.  It is shocking that we are going through this.  I think about how everyone surrounded us and took care of us.  Friends, neighbors, employees, family, friends I haven't seen in years, people from church that we had never met, offering prayers, meals, chores.  I am overwhelmed and so thankful.  Thank you.   This holiday season,  I am very thankful.

                                                                       Happy holidays,

                                                                        Stacey

Monday, November 20, 2006 (Day 150)

I apologize for the long delay since the last post.  Things have been going great.  I picked up my first cold a couple weeks ago but it is almost gone and I feel pretty good.  Hopefully it will be gone and my taste buds will back to normal for Thanskgiving!  I received a call from the doctors office and we scheudled the removal of the cathedar for next Tuesday.   Stacey and the kids went to a neighbors farm the other day and they took some good pictures.  I will upload them in the picture section. Have a great Thanksgiving!

Monday, October 23, 2006 (Day 123) 

I have been home for a little more than three weeks now and everything is going well with the exception of the kids getting sick.  Thomas and Jonathan both have some type of virus so Stacey has put me on isolation in our room.  My counts were going down some so they are having me delay the taper on the steroids until they start going back up.  They are going to check them again this week at my weekly visit.  Besides that not a lot is going on except for spending a lot of time with the family.

Thursday, October 5, 2006 (Day 104) 

I moved home over the weekend and have been enjoying spending a lot of time with my family.  I had a bone marrow biopsy done last Wednesday and I received preliminary results that show no leukemia cells which is great news!  It also showed that my blood type was all donor which was another good sign.  I am still on steroids but slowly tapering them and should be done by the end of October.  My immune system is still immature and they said it would be a while before it is back to normal.  Everything is going well and I feel great.

Tuesday, Septermber 19,  2006 (Day 88)

I have been on steroids now for about 2 weeks and I have experienced a significant improvement in the way that I feel.  I actually have an appetite and crave meals versus dreading them and just eating to get in my calories.  It is a lot easier to get in the amount of fluids that I need now that the nausea is gone.

I have visited my house a few times over the last week and plan on easing back into home over the next few weeks.  I spent a few nights over there and it was great just to experience the regular routine of having dinner with Stacey and the children and getting to read to them at bed time.  I am looking forward to being home soon.

Friday, September 8, 2006 (Day 77)

I had an appointment today and it went pretty well.  My numbers keep fluctuating and I may get a unit of blood tommorow.  I started a 1/2 dose of steriods today to help out with the graft versus host disease.  The doctors said that this will help my nausea and just help me feel better overall.  Jonathan has a cold and as soon as he is over it I am going to go visit the family.  Everybody else is doing well. 

Monday, August 28, 2006 (Day 66)

I received two units of blood on Friday and it helped my energy level.  I am doing well and still progressing.  Stacey brought Thomas and Lauren over yesterday and we were able to play for a few hours and we had a good time.  The kids are ready for me to come home and I am ready as well.

Saturday, August 19, 2006 (Day 57)

Sonny went to the clinic for his biweekly visit on Friday and was told he is doing very well.  His white blood cell count and platelet count are very near normal.  The red blood cell count is usually the last count to go down and the last to come up.  He is anemic which has made him tired this week.  He has been having problems with nausea in the mornings and we joke now he has the morning sickness.  The doctors say this usually starts getting better as time goes on.  I am spending some time with Sonny this evening which is great as we really haven't had any good quality time together in a few weeks.  I would like to say thank you to everyone who has brought us meals.  You all have been so gracious and I am so thankful.  I would love to sit and write all the thank you notes.  I have a hard time finding the time to open the mail and usually take stacks of it to Sonny.   Sometimes it is so hard to endure the day without the hopes of Sonny coming home in the evenings.  He has always been a breath of fresh air when he came home from work and an extra set of ears to listen to the children.  I have a few glass 9x13 dishes that my mother washed and didn't label.  If you are missing a dish, please email us and I will return them.  Sonny says he wants to have a big party whenever his immune system is more up to par and have everyone there to express our appreciation for all the wonderful support we have received.                                                                          Stacey

Tuesday, August 15, 2006 (Day 53)

My Sister, Toby and my dad, Mark flew into town this weekend  and we were able to hang out for a few days.  We escaped the condo for a few hours and went over to the house to play for a few hours.  It was nice to be back in my own home for a little while.  The children were very excited and wanted to play UNO, Go Fish, and Baseball.  I had to skip out on the baseball but Toby and Mark were good sports and played a few innings with them.  I think the teams were the boys against the girls, imagine that!  Anyway things are going well for me right now.  It seems that each appointment goes about the same which is good.  Today my counts were a little lower than last time but the doctor said it was not material and that they are going to fluctuate a little bit from time to time.  Overall I feel well. 

Tuesday, August 8, 2006 (Day 46)

I had another great appointment today.  My counts continue to improve and are almost within normal ranges.  Stacey brought the children over on Sunday and we all had breakfest together again (blueberry pancakes).  We had a great time and watched a movie together afterwards.  It seems like Jonathan is growing up faster than the first two!  He is doing something new everytime I see him.  RIght now he thinks it is funny to try and go up the stairs before you can get to him.  I will be going home soon and I am looking forward to it, just 54 more days.

Monday, July 31, 2006 (Day 38)

I had a great appointment on Friday the 28th.  I received a few more test results back from the bone marrow biopsy.  They checked 46 chromosomes and all of them were showing a type of XX which is good.  Today I had a procedure done, an EGD, they bascially scoped my stomach to see if the problems I have been having were related to GVHD or results from the chemo.  Either way, they said since it is not that severe that they would probably not treat it unless it gets worse.  Everything else is going really well.

Wednesday, July 26, 2006 (Day +33)

I had an appointment yesterday (Tuesday) and everything went well.  My white count is up to 2.2 which is an improvement over last weeks 1.5.  I feel good and my energy level is getting better, I have been trying to ride my exercise bike daily.  Since I am going to be here for awhile I have started a project of converting our many home movies of the children to DVD.

Saturday, July 22, 2006 (Day +29)

My appointments went well at the clinic this week; I received a couple of liters of fluid and more magnesium.  I have the weekend off and do not need to go back untill Tuesday.  My thorat is feeling much better and I think my stomach is slowly coming around.  I feel nauseous less much less often now then last week.  I am looking foward to Stacey and the children are coming to visit today. 

Tuesday, July 18, 2006 (Day +25)

Stacey came over on Sunday and has stayed the last few nights and we have had a great time.  I went to the clinic on Monday and received a liter of IV fluids becuase I have not been able to drink enough.  I am trying to drink two liters a day which normally is not a problem.  My stomach still does not feel right and my throat is still a little sore so it is hard to find drinks that work.  I had an off day today and only had to go into the clinic to get my mouth and throat examined for the research study I signed up for.  I have a bone marrow biopsy scheduled in the next few days.      

Saturday, July 15, 2006 (Day +22)

On Friday my white blood count hit 1.2 and since I was also able to eat and take my medications I was discharged around 11:00AM!!! WooHooo!  I am so excited to be out of the hospital.  I am at the condo now and everything is going well.  I will have to go to the clinic daily for the next few days and then we will switch it to 3 days a week and sometime down the road just twice a week.  Stacey brought Lauren, Thomas, and Jonathan over to the condo today and we played UNO and watched JJ the Airplane.  It was nice seeing Jonathan walk.  When I was admitted 28 days ago he was just taking a step here and there and now he is walking all over the place!  Even attempting the stairs.  I appreciate everyone's thoughts and prayers. -Sonny

Wednesday, July 12, 2006 (Day +19)

The white blood cell count doubled to 0.8!!!  Very exciting.  He wants everyone to continue to pray they will continue rising the way they are supposed to.  Nausea is an issue at times, but not as much as before.  They are starting to let him eat bland foods to see how his gut replies.  He says he feels better today and is ready to jump through whatever hoops needed to get out.   

Tuesday, July 11, 2006 (Day +18)

The morphine is off and Sonny is getting back to his normal self.  The white blood count has increased to 0.4 and his mouth and throat are feeling better.  He is on a clear liquid diet and still has bouts of nausea and vomitting, but much more infrequent.  He received some platelets and 2 units of blood, which is expected as all the blood counts go down with chemotherapy.      

Sunday, July 9, 2006 (Day +16)

I apologize for the days of no updates.  Those have been the days my mother works and I haven't been able to come to the hospital. I can't seem to find any spare time at home.  Sonny appears to be doing much better.  The morphine is down to a minimal dose as they are weaning it off slowly.  His mouth feels better and his throat is still sore, but feeling better.  We can now understand him talking as before his mouth was so sore he couldn't talk very well.  He can start trying clear liquids.  His white blood cell count has increased from 0.1 to 0.3 in the past 2 days and his liver function tests are improving as well (everything seems to take a hit from the chemotherapy and plus the liver is working overtime processing all these extra medicines).  Nausea is better.  Now that he is awake more, he realizes that he has been here over three weeks and is ready to get out of here.  The nurses say they would like to see his counts come up, see him talking (which he is) as that hints the mouth is getting better and eating soon follows, and see him tolerate eating.    

Friday, July 7, 2006 (Day +14)

Today the morphine drip has been decreased because Sonny has been so sedated the past few days.  He says his mouth is starting to feel better, but his swallowing is very painful because of the ulcerations down his esophagus.  Nausea and vomitting are the issues of the day.  Sonny is much more coherent today and the nurse said she thinks he may be turning the corner.  The doctor says that his counts should start coming up soon and that is when the mouth and throat start to get better.   

Wednesday, July 5, 2006 (Day +12)

Sonny seems a little more alert today.  The doctor told him to walk today and ride the exercise bicycle two miles.  Sonny replied with his eyes half open, "When?  Over the next two weeks?"  It was humorous.  He was able to walk several laps and ride the two miles fairly well.  Hiccups are still bothersome.  He has gotten them with each round of chemotherapy.  They interfere with sleep and make his stomach sick.  Then the Thorazine they give for the hiccups put him to sleep.  It is frustrating for him to be so drowsy all the time and he'll fight the sleep.  We will all be so glad when he can come off the Morphine.  We have had a few laughs over what he wakes up saying:)
 

Tuesday, July 4, 2006 (Day +11)

Everything is about the same.  Today is the last dose of Methotrexate.  They say he will still require the Morphine for at least another 5-7 days because of the mouth and throat.  He can't swallow anything yet, including pills, without vomiting.  They say his counts should start coming up around day 20.  Sonny has a great view of downtown Nashville and should be able to see the fireworks on Riverfront.  The children and I enjoyed the bicycle parade in the neighborhood this morning and will go up the street to the annual Fourth of July picnic and fireworks at the Aites. 

Monday, July 3, 2006 (Day +10)

As Sonny is in and out of sleep, I ask him how he feels and he says "great".  His counts are still low.  Mouth and throat are extremely painful and he continues to be on Morphine for the pain.  Nausea is still an issue and he hasn't eaten since last week.  He is getting IV nutrition.  Yesterday he was more alert, took a short walk, and sat up in the chair.  He was trying not to use as much Morphine, but the pain caught up with him and he's having to use it more again.  The doctors say he is on course and we are waiting for his counts to come up then the mucositis of the mouth and throat will start resolving. 

Saturday, July 1, 2006 (Day +8)

Not too much has changed.  Counts still low.  Fever reduced to 100 on the new antibiotics.  Mouth and throat extremely painful.  Morphine drip has him sleeping most of the day and night, which is probably a good thing so he isn't hurting.  Hiccups are irritating and painful.  We are trying to have someone with him at all times since he is so sedated.  We don't want him to get up and fall.  The neighbors have been great about having the children over to play and meals have been so helpful.  I can't express how thankful we are.

Friday, June 30, 2006 (Day +7)

These are just the hard days, no sugar coating.  Sonny is miserable.  His counts will continue to hover at the bottom for the next 7-14 days which puts him at high risk for infections.  They tell you to expect a fever.  Well, he has one, 102-103 today and the blood cultures are positive that he has an infection.  New antibiotics have been added.  The doctor says his mouth is very red and swollen related to the Methotrexate.  He has been very drowsy the past 24 hours because of the Morphine for pain, the Phenergan for nausea, and the Thorazine for the hiccups.  I talked to the nurses on the floor and this is par for the course for the next 7-14 days until his counts start coming up.  Pray for strength, endurance, spirit, and quick bone marrow engraftment.  

Thursday, June 29, 2006 (Day +6)

I am so sorry.  I typed an update yesterday but obviously I didn't save it properly.  Sonny's mouth has gotten progressively worse and they have him on a Morphine drip that he can press when he needs it.  His blood count is now very low and he is neutropenic.  Last night was a hard night for him.  He had been nauseated all day yesterday and had some issues with vomiting in the middle of the night.  He has had a fever of 101-102 all day and received some platelets for a low platelet count.  His spirits are good, but he is very drowsy from the Morphine and Phenergan.  He got his third of four doses of Methotrexate today.  We knew that these days were going to be hard, but we have to trust that the Lord is going to help us through these hard times.  The children had a good time this week with Nana and PopPop who played outside with them a lot and took them to the pool.   Thank you for all the meals.  They are so helpful when we are going back and forth to the hospital and for my mom and mother-in-law when they have taken care of the children all day so I can be with Sonny.

Monday, June 26, 2006 (Day +3)

Sonny's blood counts continue to drop and will bottom out in the next few days.  The children didn't stay very long yesterday so we decided to take Lauren and Thomas up to the hospital separately so they each had some time with their Daddy.  Jack was able to help me drive them back and forth.  Each had to check out his new room that has a great view of the downtown Nashville and play several hands of UNO.  Sonny says he feels good but is a little bit tired.  He was able to walk a few laps around the unit.  The craving was a cheeseburger and chocolate milkshake again. 

Sunday, June 25, 2006 (Day +2)

I took the children to see Sonny today and they were all able to him hugs and kisses.  Jonathan was very excited to see "Dada" and gave him a big kiss on the cheek.  Lauren and Thomas brought some pictures to decorate his room.  Sonny is doing much better.  His blood counts continue to fall as expected.  No effects from the Methotrexate yet.  He was able to eat a cheeseburger and drink a chocolate milkshake from Steak and Shake (that will add up on his calorie count worksheet :).  My mother was discharged from the hospital today and sent home on antibiotics.  She will come over tomorrow.  Christine is having some pain as we can all imagine.  Sonny's mother came over Saturday night to help with the children.

     

Saturday, June 24, 2006 (Day +1)

The night was uneventful.  When I walked in this morning, Sonny was sitting up in bed with a smile on his face.  He says he feels good but is tired.  The craving this morning was pancakes from Noshville's and some chocolate milk.  He was able to eat a little and was glad he was able to taste them.  He has spent today resting in bed.  Christine was discharged today and came by for a visit before she went home.  She is doing well and says she is a little sore and tired.  Methotrexate begins today (a type of chemo that suppresses the immune system). 

Friday, June 23, 2006 (Day 0)

The past couple of days have been very hard for Sonny.  He says he feels terrible, that his body just feels sick.  The mouth burning and vomiting are gone, but he has a terrible feeling of indigestion and isn't eating well.  They will be starting intravenous nutrition this weekend.  They say the majority of transplant patients will be on TPN (intravenous nutrition) at some point of time to make sure their body gets the nutrients it needs.  Today Sonny got his stem cells from Christine.  Christine was under general anesthesia for the harvest this morning and is recovering at the hospital overnight.  She is tired from the anesthesia and so far the pain medicine has her pain covered.  Sonny received about 1 liter of stem cells at 2 p.m. today.  The transfusion was uneventful (a good thing :).  He will start a new chemo called Methotrexate tomorrow which he will receive until day 11.  This is the one that is notorious for the mouth sores.  Sonny is having a hard time accepting that he has to go through all of this.  He says he always tries to have a good attitude but that he has never felt so horrible.  Please pray that his body tolerates the chemo and transplant as well as expected and for his spirit.  My mother was admitted to Summit Medical Center this morning for an area of infection on her leg that showed up Thursday that they think may be related to a spider bite.  When it rains, it pours.  We will take things one day at a time and have faith that the Lord is going to help us through this time.  Thank you for the meals.  They are such a blessing for us.                   Stacey

Wednesday, June 21, 2006 (Day -2)

The chemotherapy cyclophosphamide is making Sonny feel sick.  A couple of hours after it infuses he has the terrible burning sensation in his mouth that is so far unrelieved by Morphine.  He also is having some issues with nausea and vomitting.  The good news is that yesterday he did have some relief from the mouth burning around 8 p.m. and today was his last dose of this chemo.  Please pray for symptom relief and his spirit as this is frustrating for him.    

Tuesday, June 20, 2006

Sonny is now done with the chemotherapy Busulfan and has been started on Cyclophosphamide that he will receive for 2 days.  The cyclophosphamide has caused a couple of headaches, poor appetite, and a terrible burning pain in his mouth.  Apparently these are common symptoms.  This chemo is supposed to be pretty harsh on the body.  Lauren and Thomas spent several hours here on Monday playing UNO and watching VeggieTales.  We all enjoyed our time, but Lauren got upset when it was time to go home.  We know we have a hard days ahead physically and emotionally, but we have faith that God is going to help us and guide us through this journey.                                                                       

Sunday, June 18,2006


I was admitted on Friday and started on a chemo called Busulfan (Day -7).  Friday and Saturday were uneventful.  I am in a research study for a drug that decreases the severity of mucositis (mouth and throat sores common with chemo).  It is a double blind study, but I am pretty sure I got the drug as I have an extra coating of skin in my mouth.  That is helpful because when the chemo takes its toll, I'll have extra protection.  Today is Sunday (Day -5) and I am feeling great.  Stacey and I have been playing cards and took a walk around the block.  The children are supposed to come visit tomorrow.  Lauren and Thomas are clear to visit as long as there are no symptoms and I can go to the family visiting room on the unit to see Jonathan.  The room has a good view of downtown Nashville which makes it feel bigger.   

 

Note from Sonny:


After much testing and many visits to Vanderbilt over the past few weeks we are ready to move forward with the bone marrow transplant.  The doctors have made a few last minute changes in the protocol they are going to use.  Instead of harvesting via peripheral blood they are going to gather the stem cells through the actual bone marrow.  Also, initially I was going to have two days of total body irradiation and now we are going to use busulfan in its place.  The busulfan does not harm your organs as badly as the TBI would and has less long term side effects.

We were having trouble getting a 2 bedroom condo or apartment close to Vanderbilt as there is a waiting list for them.  A good friend of mine, Robert Gonzales, has been generous enough to let me and my mom stay in his vacant condo which is just a few blocks for the hospital. 

At one of our meetings we found out that one of the mid-long term effects would be sensitivity to sun so we made a last minute trip to Destin, Fl during the last week in May.  We had a great time and I have included a few pictures on the picture link.  We went on a dolphin crusie and saw dozens of dolphins.  The weather and water were great.

Everything is going well right now and I am looking forward to getting through this procedure.   It will be nice when everything is back to normal.

The current time line is:

June 12th              – Blood Test

June 13th – 15th       - Preliminary medication to prepare for chemotherapy regiment

June 16th              - Admitted to Vanderbilt and begin chemotherapy

June 17th – 22nd       - Continue Chemotherapy

June 23rd              - Christine donates her bone marrow / stem cells and I receive them

June 24th - ~July 4th  - Continue other medications

July 5th               - Discharged from Vanderbilt and move into Condo

August 1st             - I am recovering so well that the doctors tell me it is okay to go on
                               home early!! :)

 

 

Note from Sonny 

It is Tuesday May 9th, I am doing really well.  I had a fever last week and spent a few nights in the hospital.  My fever came down to 99.3 Thursday and since I had plenty of white blood cells they let me come home.  I experienced a little more bone pain over the weekend in my sternum and my temperature rose to 101 but since my white blood cell counts were good the doctor said I should be okay.  I was able to be home for Jonathan’s first birthday and we had a great time.  Thomas and Lauren helped prematurely blow out the candle and open his gifts!  J

 

NOTE FROM STACEY May 4, 2006

Sonny was in Vanderbilt on Monday April 17th through Sunday the 23rd getting high dose Ara-C chemotherapy which was uneventful.  He was home for 9 days and developed a fever and had to be re-admitted Tues. May 2 for test and antibiotics.   He loved being home and was able to sit outside and watch the kids play.  Even though he wasn’t up to his normal activity level, it was so great to have him rest in his own home environment and spend time with the children.  It was really hard on Sonny’s spirit to have to be re-admitted into the hospital and worrisome because his fever was so high and his counts were so low.   Today Sonny feels good.  His white blood cell count is up from 0.6 to 3.3 and his neutrophils are 40 % which means he is no longer neutropenic.  Now his body can start fighting off infection on his own.  His platelets are 11,000 (normal is 135,000-400,000) and he will need platelets today or tomorrow.   Remember, this blood count being low is expected after chemotherapy and they have to be monitored carefully.  Hopefully he will be able to come home in the next day or two.  Today is Jonathon’s first birthday and I am going to take him up there for a quick visit.  Please continue to pray for Sonny’s spirit and that he will be free from infection.  We still do not have a date for his stem cell transplant.  We are just taking it one day at a time. 

 

Thanks for all of the love and support.

 

Love,

Stacey

 

 

Today is Thursday April 20th and I am half way though this visit.  On Monday I started my next phase in the treatment plan for curing the leukemia.  I am getting 2 doses of chemotherapy this week on Tuesday, Thursday, and Saturday(6 doses total).  I should get discharged to go home on Sunday.  Sometime next week my blood counts should drop and I will be on isolation at the house for about 2-3 weeks while they come back up. I will then get a 1-2 week break before starting the stem cell transplant which is going to happen in two phases.  During the first phase I will get 3 days of chemotherapy and then 2 days of irradiation; on the 6th day I will get the stem cell transplant from Christine.  After that I sit tight for the next 100 days or so while her stem cells implant in my bone barrow and start generating new healthy blood cells.  At this point I have to stay at an apartment across the street from Vanderbilt because they want me to be within 5 minutes for the first 30-45 days.  I will be going in every morning at 7:30 to have blood drawn and testing.  If everything is going well after 30-45 days I could possibly spend the following time at my house.  I found a good video on the Cancer Centers of America’s web site that descirbes the allogenic stem cell transplant and leukemia  for those who are interested in learning more.
http://www.cancercenter.com/stem-cell/stem-cell-allogeneic.cfm
Update for 4-8-2006
On Tuesday I had a few tests done to determine the status of my liver, lungs, and heart in preparation for a stem cell transplant (used to be called a bone marrow).  The tests came back normal.  My liver function tests were a little elevated but the doctor said that was more than likely a result from all of the medication that I have been prescribed over the last month.  We have decided to move forward with the stem cell transplant. The first step will be to get an additional dose of chemotherapy.  It will be a higher dose than the first one, but considering that I am going into this round healthier than I was with the first round, the doctor said it may not be as difficult.  I will receive doses on days 1,3, and 5 and my blood counts will go down again like the last hospitalization.  We plan on starting the week following Easter.  After this 21-28 day time period, I should be able to take a 1-2 week break before receiving another 5 days of chemo and total body radiation preparing for the transplant.  Immediately following that I will receive the stem cell transplant which is only a 2-3 hour process because they are basically infusing them through my IV.  I may be hospitalized for just a couple of days for observation before being released.  At that point I am required to stay at an apartment across the street from Vanderbilt for a minimum of 30-45 days to watch for any complications.  If everything is going well at the end of the 45 days I may be able to spend the following 55 days at my house.  The reason they want me to stay so near by is in case some of the side effects that are common with this type of transplant start to happen, I can get be at the hospital in 5 minutes.  I will get blood drawn every morning at 7:30AM and receive IV fluids and blood products (platelets, packed red blood cells, etc.) if needed.  Blood counts will go down with the chemotherapy and radiation similar to last time.  Just like last time, infection will be a risk until my blood counts increase, which should happen more quickly since I am receiving healthy stem cells from Christine.
I have had a great time over the last few weeks playing with the children.  We spent a lot of time outside since the weather has been so pleasant.  We spent time playing soccer, riding bikes and just running up and down the street with our friends (I didn’t do too much running!).  I even had some time to get a few pictures taken with Jonathan for his 9 month pictures.
Thank you for all of the support, emails, care packages, cards, and meals for my family.  Stacey and I will be trying to update the web site more frequently as things start happening.
-Sonny
Update 3-28-06
 I had a few doctor’s appointments yesterday to draw more lab work, review last week’s labs, and discuss consolidation treatment options.  The results from last week’s labs looked good.  My WBC continues to increase and platelets have stabilized within normal ranges.  My red blood cells are still low but everyone feels like they will come up on their own over the next 7 to 10 days.  We met with a doctor at Vanderbilt who specializes in stem cell transplants and discussed our options for consolidation treatment.  Based on the fact that my white blood cell count was so high on presentation, the chromosome results, and the fact that my sister is a great match, Dr. Greer is recommending that I have a stem cell transplant.  I will have a few tests run next week in preparation of a transplant. The headaches have subsided and since the weather was so good today I went to our neighborhood park with the children.  We all had a great time.
-Sonny

NOTE FROM SONNY (3-23-06)

Wow, what a home coming. On Monday my white blood count was up to 1900 and platelets to 150,000; I was able to be discharged but first had to have another bone marrow biopsy and spinal tap. Neither experience was nearly as bad as I had thought and we were done before noon. Mark helped with relocating me from the hospital room and into my house. I slept most of the way home and did not understand why Stacey insisted that I wake up upon entering our subdivision. There were welcome home signs and balloons that started at our second round-about and continued on until we turned on our street, then there was one in every yard. At the end of our cul-de-sac there was a wonderful group of our friends with their children welcoming me home. My three were waiting patiently at the glass door with Nana. This is a humbling experience. It is hard to describe the feeling when so many people spend their own time on making you feel so welcome to be back home. It is great to be home. It was

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3-17-06

Stacey said Sonny had another good day.  His white blood cell count went up to 700 and platelet count is up to 60,000.  He has no fever and he is eating better.  The doctor continues to think he might be able to come home on Mon. or Tues.  J

 

 

3-16-06

Stacey said Sonny had a great day today.  She said he looks better, feels better, his rash is going away and his temperature is normal.  His counts started going up!!!! His white blood cell count increased from 300-600 and his platelets count jumped from 14,000-30,000 and his hematochrit went up 1 point.  The doctor said that this is great news and he may be able to come home early next week.  Stacey said they are taking one day at a time. 

 

3-15-06

Stacey said Sonny’s fever was down to 99.5 today after they restarted some of the antibiotics.  They went for a walk today down to the Solarium.  She said the Solarium is a beautiful common area with a glass ceiling at Centennial that is full of plants and cafe tables.  She said it was a nice place to be. J  Sonny says he is SO ready to be home with his family.  We need to continue to pray that he will be home with his family very soon.

 

 

3-14-06  

 

Stacey was finally able to go see Sonny today.  She said he wasn't feeling well today.  He had a 101.2 temperture today and was a little sick to his stomach. Stacey said it was SO GOOD to see his smiling face and give him a big hug.     

 

3-13-06  NOTE FROM SONNY

Thank you for everything; I appreciate all of the messages, email, and greeting cards.  I also appreciate all of the help that has been provided to my family from the meals to the help around the house.  We are blessed to be surrounded by such great friends and family.
 Everything is going as planned; the doctor said that I am doing very well.  It has been great to be fever free for the last couple weeks.  My white count today was 300 and he said that it will stay between 200-500 until days 25 through 28 at which time it should start increasing (Today is day 20).  The only issue I have right now is a skin rash that the doctors believe is from one of the antibiotics.  They went ahead and substituted most of the antibiotics out for other ones to see if that would help.  Fortunately it does not itch so it is just a matter of figuring out what caused it and getting rid of it.  Besides that I feel great and can not wait to go home and see my family.

3-13-06

 

Sonny had a great weekend.  His white blood cell count is hanging around 300 the past couple of days, which is normal.  Stacey said sometimes it will stay the same for up to a week before it starts going up.  He seems to need more rest lately so he has been taking it easy.  He was able to take a walk with his sisters yesterday with a mask on.  He said it was nice to get out of the room.  J Sonny’s sister Toby was here this past week.  She was able to keep Sonny company at the beginning of the week and then she was able to play and help with the children the rest of the week.  Sonny and Stacey were thankful that she was so much help.  Unfortunately, on Friday (which was the first day that Stacey was able to go see Sonny after Lauren and Jonathan had the flu) Lauren woke up with a 103 fever.  L  She had a fever Friday, Saturday, and Sunday.  The doctor thought she picked up a new virus when she went back to so Stacey has to wait again for Lauren to be fever free for 24 hours before she can go see Sonny.  Stacey is waiting patiently to see if Lauren stays fever free so she can go see Sonny tomorrow.  They are both missing each other tremendously. 

 

3-10-06

 

PRAISE THE LORD!!!!!!!!!!!!!!!!!

The bone marrow biopsy showed that there were NO more leukmic cells.  (0%) Chemotherapy would have been given if the percent was 5% or more.  He will be in the hospital until his blood count is up.  His blood count is still very low from the first round of chemotherapy.  Stacey asked that we continue to pray for Sonny to stay free of infection.  He has an appointment at Vanderbilt at the end of March to talk about his consolidation therapy. This is just the first phase.  The doctor said this is like breaking off the tip of an iceburg.  Follow up chemotherapy will have to be given to reach the final cure. 

 

3-09-06

 

Stacy said they are still waiting patiently for the results, they said it could be as late as 8:00 pm. Christine is a perfect match for bone marrow, if he needs it. Stacy is feeling much better and will be able to see Sonny tomorrow. Praise the Lord!

 

3-07-06

 

Sonny said he had a great day.  He says he is sleeping better at night even without the sleeping medication.  He got one unit of platelets and had the "day 14" bone marrow biopsy.  The biopsy was easier to handle this time.  They should have results within 48 hours.  Please continue to pray that biopsy will be free of leukemic cells.   

 

3-06-06

 

Sonny feels great so far today.  He had a great night and didn’t have to use any sleeping medications.  Tomorrow is a big day.  He will have another bone marrow biopsy.  We need to pray for the results to be clear of leukemia cells.

Lauren went back to school today and Thomas feels better.  Stacey and the baby continue to have symptoms so Stacey still cannot go see Sonny.   

 

 

3-05-06

 

Sorry we didn’t update yesterday.  Yesterday he got 2 units of blood and 1 unit of platelets.  He has sores in his mouth from all of the medicines and that is somewhat bothersome.  He is starting to have more cravings for food.  He is so thankful for his family and friends helping out and making runs when he is craving something special. 

Today Sonny is doing well.  He was able to ride his bike for 10 minutes and take a shower. 

Now Stacey isn’t feeling well.  L  Stacey’s mom is still sick with the flu and unfortunately, Sonny’s mom left Saturday.  We need to continue to pray for the family to get well soon so Stacey can be with Sonny. 

 

Stacey said that the meals that everyone is bringing has been such a blessing. 

  

 

3-03-06 (10:30 a.m.)

 

Sonny slept better last night.  Yesterday he was able to get on the stationary bike for a few minutes.  His fever is gone.   The doctor said he has done better than expected.  Lauren had a flu test taking yesterday and her flu test came back positive. Jonathan’s was negative, but the doctor said he probably will have it as well.  Stacey and Thomas are now taking Tamiful to help prevent them from getting it.  Stacey said young children can be contagious for up to ten days so Stacey is sad that she can’t go to the hospital to see Sonny

 

3-02-06 (11:00 a.m.)

 

Mark and Christy from Sonny’s work heard that the doctor said a stationary bike in the room would be great. They delivered a bike this morning.  J The doctor said for him not to over do it, but riding the bike may help decrease the risk of pneumonia.  Sonny did not sleep well at all last night, but today his spirits are high.  His blood count continues to decrease, but now more slowly.  Stacey said, “Now it’s time to just sit and wait.”  Christine is bringing him fettuccini today.  We will see how that goes.  Hopefully it will taste good to him.J   Thomas feels better today, but Lauren and Jonathan continue to have a fever.

 

3-01-06

 

Stacey said Sonny had a good night last night.  He still has a fever.  He is having a better day today.  Christine brought him lunch today and he was able to eat.  He was able to sit up in a chair and he took a walk with his mask on.  His platelets are 9000 and he will be receiving more today. 

When it rains it pours!  Unfortunately, now the baby has a 101 temp, Lauren still has a 102 temp, and Thomas has an ear infection.  Now that Stacey has been exposed to the children the doctor told her not to come up for 3-5 days.  Sonny understands and doesn’t want to take any chances.  They will be video conferencing. 

 

 

2-28-06

Stacey was only able to talk for a few minutes, but in that short time she did tell me that Sonny does have a fever again today.  The doctor said it is normal to have a fever.  His white blood count is down to 400. Now Thomas has an ear infection and Lauren’s fever is still fever high.  Stacey’s mom took Lauren to her house to try to keep the germs out of the house and try to keep Stacey, the baby, and Sonny’s mom well.  Please continue to lift Stacey up as well.  She needs her strength for the kids and Sonny. 

 

 

 

 

 

2-27-06

 

Sonny’s doctor said he is very happy with Sonny’s progress.  Thank you Lord!  J Today they are giving him more blood and platelets and he has to take medicine before the procedure to make him sleepy.  Stacey said Sonny doesn’t like to feel sleepy and groggy so continue to pray for his spirit to be uplifted.  She said being in the room all of the time is hard for him. 

Please continue to pray for Sonny not being able to see the kids.  Stacey said this is really hard on him.  Lauren lost her first tooth yesterday, but thank goodness she was able to show Daddy by video conferencing.  

We all need to continue to pray that Stacey stays healthy so she can be around Sonny.  Last week Thomas had a fever and today Lauren is coming home from school with a 103 temperature and a sore throat.   We know the Lord will only give us what we can handle and we know she can handle this, but let’s not forget to pray for her helping hands that are taking care of the children...Sonny's mom and Stacey’s mom.  We need to pray that they stay healthy as well. 

 

2-26-06

Sonny's mom said he had a better night last night.  He did not sweat as much.  His fever is gone.  Praise God!  Stacey said that he is taking this opportunity to grow a beard and see what that looks like...I told her we wanted pictures of that.  :)

 

 

 

 

 

 

 

2-25-06 (8:00a.m.)

Stacey said that the nights are the hardest for Sonny, but last night his spirit was lifted after reading the guestbook.  She said it felt good to laugh. J  Sonny’s blood cell levels are 1100 which means the chemo is working, but in result of this, he basically has no immunity.  Stacey asked that we just pray that the family stays healthy. 

 

The kids can't see Sonny right now because they are trying to prevent any sickness.  Please continue to pray for the kids adjusting to not having Daddy at home.   They just set up a camera on Sonny’s computer at the hospital and at home so Sonny and the kids can see each other on the computer.  Thank God for technology!  That is so cool! 

2-24-06 (9:00 a.m.)

Stacey said that Sonny is no longer in the 48 hour crisis with getting Tumorlysis Syndrom.  Praise God!  Another praise is the chemo is responding well as far as his white blood cell level is concerned.   The levels are normal now.  He still has a 101 fever and they still don't know where it is coming from. Please pray that they can find out where the infection is coming from.  His biggest risk is more infection.   

Stacey asked that we please continue to pray for Sonny's spirit.  The chemo is making him very tired, nothing taste good so he is not eating or drinking well.  In two weeks they will do another bone biopsy to determine if he will need another round of chemo. 

Please remember that Sonny cannot have visitors or flowers in his room, but you are more than welcome to send him your thoughts on this web site, send him cards or e-mail him.  Stacey says he loves to hear from us, but at times he is just to tired to talk on the phone. 

On a funny note. The doctor said that this was the cleanest he has ever seen Sonny's hospital room in the 7/8 years he has been there.  He said you could even eat off the floor :)