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Sunday, April 11, 2010 3:55 PM CDT
Wow, it's been 5 months!
Where has the time gone?
New pictures have been added.
We hope everyone is doing well. Everything is great with us. Since our last update:
- Sam had a kidney biopsy performed last November (and everything is great!);
- We traveled to Cleveland to spent a great Thanksgiving with the Antonucci's and Medvin's;
- We had snow on Christmas Eve and Christmas Day in Dallas (a first I believe)and had a great Christmas;
- A foot of snow in February (a record);
- Sam played basketball for the first time;
- Sam is back with his old soccer team this season and has scored two goals so far;
- Sam has lost more teeth for a total of 8 teeth (the tooth fairy is gonna have to take out a loan);
- We camped with the Young family at Carlsbad New Mexico, and visited Carlsbad Caverns (Tisha is doing great by the way); and
- He is doing very well in Kindergartern. There is about 7 weeks of school left (that's hard to believe!).
The most significant milestone occurred in late February. Sam reached FIVE YEARS since ending his chemotherapy! Sam now is classified as being in remission! Praise God! Going forward, Sam will not need any more CT scans. Oncology will follow Sam going forward with blood work.
For the first couple of months of 2010, Tami had developed intestinal issues which resulted in a surgery to remove a foot of her small intestine. Needless to say, this was an unexpected complication; however, she is rebounding very well, and we are very happy to have Mommy back on her feet!
Spring has sprung, and we are enjoying the outdoors as much as we can right now. Sam and I just finished planting tomato plants, cucumbers, and leeks. Hopefully, between the both of us, we'll somehow not kill all of them!
We hope all is well with each of you. Thank you for your prayers! We are blessed!
Take care,
Jonathan
Sunday, November 1, 2009 4:35 PM CST
NEW PICTURES ADDED!
Hello to all! Time is flying by so fast, that before I knew it, it's been two months since our last update. I apologize for that.
Overall, Sam has been doing very well. Our last update stated that we were getting ready to travel to Stanford for Sam's 1 year kidney biospy follow-up procedure. The week we were to travel, Sam came down with the flu. It was classified as Influenza A, which is what the H1N1 virus is classified as. After a couple of days taking Tamiflu, Sam was feeling much better; however, the hospital canceled the procedure. It has now been rescheduled to this Friday, 11/6.
Sam has been busy with school, karate, swimming, and Y Guides. He and I attended our first Y Guides camp-out about an hour north of Dallas with about 10-15 of his buddies. We spent the weekend practicing archery, shooting BB guns, and fishing. A great time was had by all.
Of course last night was Halloween. As you can see by the picture, Sam was Darth Vader. Sam has all six Star Wars movies memorized by now. If he doesn't, I certainly do....
Sam is also beginning to ride a bike without training wheels. He's got the riding part down, now he's working on the starting and stopping functions.
Although Sam may be in school, Tami has not slowed down at all. She is involved at the school, she is the President of the Family Advisory Board at Medical City Children's Hospital, and continues her voluntary work with the St. Vincent de Paul Society. I can barely keep track of where my shoes are.
We are hoping this will be our last visit to Stanford. Although we love it out there, it will be nice to bring the transplantation process with them to closure (which means that his kidney is functioning as planned). Going forward, we hope that all kidney follow-up will remain in Dallas.
Thank you for all your support and continued prayers! We have much to be thankful during this season. We hope and pray that all those needing a transplant will receive the same blessing we have very soon.
Take care,
Jonathan
Monday, August 24, 2009 4:17 PM CDT
NEW PICTURES ADDED.
Happy Monday to all. August has been a very busy and exciting month. The biggest date was Sam's one-year anniversary of his kidney transplant! What a great year it has been!
The weekend after the anniversary, we traveled to Clovis, New Mexico to visit Tisha, Doug, and the kids. A couple of months ago, the Young family relocated to Clovis where Doug is a pastor of a church in that town. It was great to see everyone and visit. Tisha looks great, and Sam had a blast playing with Haylee, Aby, and Reese.
Sam has spent most of the month swimming. I believe he and Tami have started to grow gills.
As you can see from the pictures, Sam started kindergarten. His first day was today. Sam did great. He has a great class with some kids he knows from his soccer and T-ball teams. It is a great school, and we are very blessed that he can start kindergarten. Visiting his class makes me want to take kindergarten again (especially since they have nap time!).
In a couple of weeks, we travel back to Palo Alto, California to have a one year post-transplant visit with the Nephrology Clinic at Stanford. Sam will undergo a kidney biopsy as part of the protocol (which will be his third biopsy). Hopefully, this will be the last biospy. It will be great to show the nurses and doctors how well Sam has recovered this past year.
All in all, a very good month and now a start to new routines. We are blessed to be at this point. Thank you for your prayers! Please continue your prayers for those waiting for a transplant.
Take care,
Jonathan
Sunday, July 26, 2009 6:01 PM CDT
NEW PICTURES ADDED.
Good Sunday evening! We hope all is well with you. It's hot in Dallas this summer, so we have been busy traveling this and trying to stay cool.
While I was out of town in June, Tami and Sam traveled to Cleveland to visit Tami's family and friends. Sam had a great time playing with his cousins and eating lots of good Italian food.
In July, we traveled to Seattle. I had several meetings there, and Tami and Sam came along to get out of the heat! We were able to eat enough seafood there to grow gills! Sam is a pretty fearless seafood eater.
We also traveled to Springfield, Oregon to visit my parents. We spent time enjoying the outdoors, picking blueberries and cherries (actually eating more than we kept), and traveling to the Oregon coast. It was a nice, relaxing time.
We are now back home, and Sam has another camp he is attending this week. One month to go before school starts!
We hope your summer is going are well as ours. Thank you for your continuing prayers and please continue to pray for those who are in the hospital and are unable to enjoy these times like us.
Take care,
Jonathan
Monday, May 25, 2009 4:03 PM CDT
NEW PICTURES ADDED!
Greetings this Memorial Day Weekend. It's been about two months since our last update. Sam has been busy enjoying the spring. He finished another soccer season, and the Fireflies (his soccer team) had another successful season (meaning no serious injuries!). He now has started T-ball season, and he is really getting the hang of catching and throwing.
His health continues to be strong. In fact, his nephrologist has reduced one of his two blood pressure medications and has eliminated ferrous sulfate (iron) altogether! Sam's now down to 22 medications a day. I know, that is still a lot, but it's better than the 40 he was on right after the transplant.
Sam has also gotten to do some exciting things the past couple of months. Tami and Sam traveled to Florida and went to Disneyworld with Tami's Aunt Terri, sister Lisa, and Sam's cousins Nicholas and Bella. A good time was had by all. A couple of weeks after that, we all traveled with five families to Lake Murray State Park near Ardmore, Oklahoma to rough it outdoors for a couple of nights. We all pitched tents, weathered a storm the first night, kept a roaring fire going, and ate until our eyes nearly popped out. All the kids had fun, especially since they could get covered in mud!
Tami is doing great and is as wonderful as ever. Sam will attend Vacation Bible School at our church's school this summer. Tami is going to be the "snack mom" for VBS, so I'm gonna guess these kids may be in for a treat......and probably a healthy one at that!
Sam visits the nephrologist every three weeks now. We're still having to get use to such infrequent visits! He is looking and feeling good, and we are looking forward to a fun summer.
Thank you for your continued prayers, and please continue to pray for all those fighting cancer or kidney failure.
Take care,
Jonathan
Sunday, March 29, 2009 6:43 PM CDT
NEW PICTURES ADDED.
Good Sunday evening to all. We hope everyone is doing well. It's been about six weeks since our last update, and Sam is doing very well. Winter has passed for the most part, and we are enjoying springtime.
We recently measured Sam, and it appears that he has grown between 1"-1 1/2" since his transplant. That is the most growth by far in a similar timespan. His confidence level appears to be improving when it comes to things that are a little more daring; however, he's always going to be a cautious kid.
His doctor's appointments are also becoming more spread out. He's now seeing a doctor about once every three weeks. His bloodwork is also decreasing in frequency to about every other week.
Soccer season has started, and Sam is excited about getting back with his Firefly teammates. He's also been busy with swim class, spanish class, and gymnastics. I don't know how Tami keeps it all coordinated, because I can't remember what day of the week it is, period.
Thank you for your continuing prayers! We couldn't be more blessed and happy with how things are. We continue to enjoy the moment. Please continue your prayers for those who are facing difficulties with their health.
Take care,
Jonathan
Sunday, February 15, 2009 2:14 PM CST
New pictures added!
Greetings to everyone! We hope everyone is doing well. Sam continues to do very well. This past Thursday marked six months since his kidney transplant. Boy, the time has flown by!
We have been enjoying the time Sam now gets to have playing activities that were postponed since transplant or not having to rush home to begin his dialysis treatment.
Sam continues his 24 hour a day obsession with all things Star Wars. We have been watching the Star Wars series of movies for the past few weeks.
On Tuesday, February 17th, Sam will have his second kidney biopsy. This is a standard follow-up procedure. It is to determine if the kidney is showing signs of rejection and/or toxicity from the medication. Instead of having the procedure performed at Stanford, we are having it performed at Medical City Hospital here in Dallas.
Thank you for your continuing prayers! Sam continues his amazing progress. We are very blessed!
Take care,
Jonathan
Sunday, January 11, 2009 2:32 PM CST
NEW PICTURES ADDED!
Happy belated New Year to everyone! We hope you are doing well. It's hard to believe it's 2009 already.
Santa was very good to Sam this year, and God was good to all of us this past year. As it seems many people have been sick the past month or so, it hit our home as well. Sam fought a nasty cold on Christmas. It led to a tough double ear infection. Sam may be experience at battling cancer and kidney failure, but this was his first ear infection ever. This resulted in a quiet Christmas Day, which is what we needed because Tami caught a flu-like bug Christmas night, and Grandma Selma caught it a couple of days later. We are now healthy once again.
As the calendar rolled into January, the Christmas tree is gone, the lights on the house have been taken down, and Sam has become fixed on all items related to Star Wars. It's interesting to think that something I was fixated on as a seven year old is now something my five year old son is consumed by.
Sam continues his weekly nephrology appointments. His medications continue to be tweaked somewhat, but have remained relatively stable.
We were blessed to have a holiday season with Sam on the mend. Please continue to pray for all those who lost their child this past year as they had to cope with a holiday season without their child.
Take care,
Jonathan
Sunday, December 7, 2008 7:21 PM CST
NEW PICTURES ADDED!
Good Sunday to all. It's hard to believe it is already December. This next week will mark four months post-transplant. Sam continues to do well. His immunosuppresant medication has been reduced further, which is good. As the dosage of these medications reduce, it reduces the chances of side effects. He continues to feel good and improve.
Sam has worked on his list for Santa, and he's hard at work decorating the Christmas tree today. He asked me does Santa really use reindeer to fly. He said that just seems silly.
Tami continues being her incredible self. She is now getting back into her charitable work with St. Vincent de Paul.
Currently, Sam is having weekly blood work performed and having every other week doctor appointments. That is a good sign that things continue improving. Tisha appears to be doing great. You would never have guessed that she had undergone a nephrectomy (a kidney removal).
Thank you for your continuing prayers! We are enjoying every day and look forward to a great holiday season!
Take care,
Jonathan
Sunday, November 16, 2008 2:31 PM CST
Good Sunday afternoon!
I apologize for the long delay in an update. I actually typed an update last week, but did not realize it did not post to the website until Tami noticed the date on the website. Sorry about that!
It is now three months since Sam's transplant. Can you believe that? Overall, Sam is doing very well. He has been feeling good with very few headaches. In fact, it's been over a week since his last headache!
Last week, we traveled back to Lucile Packard Children's Hospital at Stanford for Sam's three month kidney biopsy procedure. This is a standard follow-up procedure to take a close look at the kidney. The biopsy went well. Kidney performance is expected and no signs of rejection. One item noted is the kidney has a low level of toxicity. This is an indication that his anti-rejection medication is at too high of a level. This is not an unusual situation. The doctors are adjusting his medication to get it at the appropriate level. Hopefully, his levels will adjust quickly and his kidney will not incur any more toxicity.
As you can see from the picture, Sam was all set for Halloween. He was a transformer named Optimus Prime. I'm ignorant when it comes to transformers, but what Sam tells me, Optimus Prime is a good guy. He got lots of candy from the neighborhood, and I'm enjoying it!
Sam continues his weekly blood work to ensure his kidney performs as expected and he continues to heal from the surgery. His appetite seems to be increasing which is a very good sign.
Thank you for your continuing prayers! Thank God for Sam and Tisha's continued healing!
Take care,
Jonathan
Sunday, October 5, 2008 2:29 PM CDT
NEW PICTURES ADDED!
Exciting, unexpected news! Sam came home yesterday! This past week, the doctors were comfortable enough with Sam's progress and stability, that they saw no reason why his continued monitoring could not be managed by the team in Dallas. We had not expected that decision to occur this quickly, especially with the headaches and nausea Sam was experiencing a couple of weeks ago.
We are very excited to be home. We are busy unpacking two months worth of stuff, and we are busy de-cluttering our house of dialysis supplies and equipment! It's gonna take a forklift to move all the supplies out of the house. Sam's room can now look like a boy's room instead of a hospital room!
Sam continues to experience headaches from time to time. The doctors have narrowed down the problem to high blood pressure occurring at night. We will continue to monitor his pressure and hopefully it will correct in time.
What a blessing! What else can be said?
Jonathan
Sunday, September 28, 2008 8:10 PM CDT
Hello to all!
Over the past couple of weeks, Sam has had some ups and downs; however, he continues to progress. This past week he experienced severe headaches (possibly migraines) and vomiting. The good news is that his kidney continues to perform well. He was admitted for one night into the hospital for monitoring and to push fluids into him via an IV. He received a head and neck CT scan to rule out anything out of the ordinary as it relates to his headaches. He is now back in the apartment and for the past three days, he has been free of headaches and nausea. These effects could possibly be side effects of all the medication he takes. Several of the meds result in headaches, vomiting, nausea, and dizziness.
He is now only having blood work performed a couple of times a week and has clinic appointments Mondays and Thursdays. That is a very good sign that he continues to stabilize.
Tami continues her amazing care of Sam, day in and day out. Even with his down times and the sudden need to admit him into the hospital, she stays calm and comforting throughout.
Sam felt well enough yesterday for us to take a quick trip to Muir Woods, just north of San Francisco. It was good to have Sam run down the path along the redwoods.
Thank you for your prayers! Keep praying for Tisha's recovery! We hope Sam gets stronger every day, and he is free of these headaches!
Take care,
Jonathan
Saturday, September 13, 2008 4:08 PM CDT
NEW PICTURES ADDED.
Good Saturday afternoon to all. We hope all is well with you. Overall, Sam has had a very good, boring week! This was the first week of nothing out of the ordinary occurring. He had two clinic appointments and his daily blood work performed. They actually cancelled Thursday's and Saturday's blood work because they felt comfortable that he was in pretty good shape. He will go back on Monday for blood work.
Some of his blood counts are still out of the acceptable range, such as his magnesium; however, it will just take more time for his body to heal and fully regain his strength. As you can tell from the pictures, he is losing some of the puffiness he has had all these years as a result of non-performing kidneys.
In just the past few weeks, he actually has grown! This is the first time he has been able to grow without taking a daily growth hormone shot.
Hopefully, this next week will consist of the same ol' routine of blood work and clinic visits. We'd like to see him continue this boring streak!
Please continue praying for Tisha's full and speedy recovery. Thank you for your continuing prayers!
Take care,
Jonathan
Saturday, September 6, 2008 8:16 PM CDT
NEW PICTURES ADDED!
1,229 days
Sam was on dialysis for 1,229 days (yes, I counted).
This week, Sam had to take a step back before he could take a step forward. On Tuesday, Sam had his supra-pubic catheter removed, which was a very quick procedure, but he had to be sedated for it. After he awoke, he was unable to pee for several hours. He was in a great deal of pain because his bladder filled with urine, but he could not pee. He had a condition called urinary retention, which has a number of causes, most likely bladder spasms. He had to have a foley catheter placed late Tuesday. The good news was that on Thursday, this catheter was removed and he was able to pee! I've never stared at pee as much as I did for this! Thursday afternoon marked the first time since March 31, 2005 that Sam has been free from any type of catheter! What a sight!
It hasn't taken him long to adjust. He's getting back to his old self, and is very excited to be able to jump out of bed in the mornings without Tami or I disconnecting him or carrying a urine bag. Life is good!
He continues to have daily blood draws to monitor his immunosuppresant levels. It's a continuous balancing act of medications. The one mineral he's having trouble getting into the normal range is magnesium. Hopefully, this will correct itself in the coming days.
Prayers are definitely being answered! He's looking and feeling good! As the chief nephrologist told us, he's hoping for a boring week for Sam!
Take care,
Jonathan
Sunday, August 31, 2008 3:53 PM CDT
Happy Sunday!
New pictures added!
We hope everyone is doing well. This past week has been an interesting one. Overall Sam is doing well; however, his picc line failed so on Friday he had a procedure performed to insert a new one. This enables daily blood draws without having to stick him everyday. This line failed on Monday, so Sam had several sticks this week. His veins are difficult at this time due to so many IVs, etc. that he looks like a pin-cushion.
Yesterday was by far his and our best day. Once he completed his blood draw for labs, we just hung out for the better part of the day.
We have been told Sam is the first child of his age/size to leave the hospital without an n-g tube (i.e., a feeding tube going down the nose and into the throat). Because fluid intake in imperative and the number of medications to be consumed daily, every child starts off with an n-g tube, except Sam! Although it's an all day chore, he drinks 2 liters a day and takes 37 pills a day. Over time, the number of pills will decrease substantially; however, for the time being, that is the routine.
Tisha continues to improve. In fact, we met a father at the hopsital who donated his kidney to his son who had met Tisha. He was in awe of her improvement.
Sam has a supra-pubic catheter, which is a catheter located just below his belly-button and is connected to his bladder. This catheter is controlling his urine output for now and allowed all the blood from surgery to pass through until the area has healed. This catheter is to be removed Tuesday morning. He will be sedated for this. This will allow him to really move around freely.
We hope this will be a stable week for Sam. Right now, it's a matter of monitoring kidney function, monitoring his immunosuppresant levels, getting him to eat, drink, and take his medications.
Thank you for your continuing prayers! Tisha and Sam continue to make remarkable progress. We are so blessed!
Take care,
Jonathan
Sunday, August 24, 2008 4:19 PM CDT
Good Sunday afternoon!
We hope everyone is doing well. I apologize for not updating sooner. It was a long week, but amazing progress has been made.
Tisha had her final follow-up appointment this past week, and she was released to go back home! In less than 10 days post surgery, Tisha arrived home! What a blessing!
Throughout the week, Sam consistently progressed, to the point that he was discharged late Friday! It was not easy, but he managed to prove to himself and the doctors that he handle taking his medication and drink enough fluids daily to be released from the hospital. Once out of the hospital, he has increasingly become more of his old self.
The past couple of days, we are all just trying to rest and develop a new routine of medicines, drinking, and eating. Right now, it's an all day effort, but Sam is adjusting. Each day, Sam is to go back to the hospital for a daily blood test to make sure his body is not rejecting the kidney and his levels are stabilizing.
Thank you for your continuing prayers! Each day gets a little easier and progress continues! Please continue for Tisha's full recovery!
Take care,
Jonathan
Sunday, August 17, 2008 8:32 PM CDT
NEW PICTURES ADDED!
Happy Sunday to everyone! We hope all is well with you. Lots of progress and lots of praise to God these last few days. Unbelievably, Tisha was discharged from the hospital Saturday morning! That is 4 days after the transplant. It is hard to believe. She has recovered at an amazing rate. She still is sore, and will be for some time; however, by looking at the pictures you can see what an incredible person she is and how great she looks. If this were me, I'd still be in bed, doped up on drugs and whining like a baby!
Sam has progressed to the point that he was able to leave the PICU on Saturday and enter a private room. The first couple of days in the PICU were challenging and painful for Sam. I think he struggled to figure out if he really was getting better or not. But I think he, along with Tami and I, began to suffer from PICU-itis starting on Friday. Once he moved out of the PICU, his attitude and strength have grown significantly.
Sam's next steps are to drink, drink, and drink some more. The goal is for Sam to be drinking at least 2 liters of fluids a day. The focus is to keep this new beautiful kidney working as hard as possible. He still has a few IVs and a cathedar; however, he is coping with that pretty well.
Tisha and her family have been coming over to visit Sam, and today, that made his day. Tisha and Doug's kids are so wonderful to Sam.
Thank you for all your prayers! Amazing things have happened in such a short period of time! We are so very blessed!
We'll keep you posted,
Jonathan
Wednesday, August 13, 2008 11:34 PM CDT
NEW PICTURES ADDED.
As you know, Tami and I do not have the same blood type as Sam; therefore (and unfortunately), we are not matches to him for a kidney transplant. Some of you may recall a journal entry made back on January 13, 2006. Tami wrote a poignant note about considering a living donor kidney transplant. There were several people who came forward during this time, and we were astonished by their unselfish act of love to be willing to put themselves at risk for the sake of Sam. To all those individuals, we cannot begin to thank you enough.
This website has concentrated on keeping everyone current on Sam’s journey. We wanted the focus to be on Sam and to provide a chronological journal for him. For the first time on this webpage, the focus is not on Sam. I would like to focus on an angel.
So, how do you discuss the person that saved your son’s life? Especially, someone you had not met until they came forward willing to donate her own kidney to save Sam’s life? There’s no textbook to tell you how, and I know that nothing I can say or write will even come close to what Tami and I feel. It is impossible. At a minimum, I’d like to tell you a few things about this incredible individual, Tisha Young.
The first response to Tami’s journal entry came from Tisha. At the time, we knew Tisha’s sister, Tara, but did not know Tisha. What a shock to learn that someone who had been watching from afar, who had not met Sam, with so much going on in her own life, wanted to put herself at risk to give life to Sam! Did God send His angel, Tisha, to us to save Sam’s life?
At the time, she was included with the others who came forward to have a six-way blood match with Sam’s blood. The best possible match from a parent is three out of six, which is considered very good. Once the testing was complete, to our surprise (and to the surprise of the Tranplant Team at the hospital), Tisha matched Sam’s blood markers FOUR out of six! Even if Tami or I were a match to Sam, we could not have matched him as well as Tisha did! Did God send His angel, Tisha, to us to save Sam’s life?
Once this was complete, Tami had several conversations with Tisha. We wanted Tisha to know that at any time, if she changed her mind, or if something else in her life prevented her from moving forward with this, that we understood and would not hold it against her. Just the thought of her wanting to do this was incredible. That was one of the main reasons why we have never discussed her on this webpage. We did not want the pressure placed upon her to follow through with a kidney transplant if she, or her family, was not comfortable with it. Every step of the way, Tisha would say that she was committed to this, and she was not going anywhere no matter how long it would take. Did God send His angel, Tisha, to us to save Sam’s life?
In early 2006, The Transplant Team began the process of planning the kidney transplant for the summer of 2006. Different testing phases were completed, and everyone was getting organized to travel to Palo Alto. Two weeks prior to the scheduled transplant, concerns arose from the Oncology Team that Sam’s tumor may still be active. It was decided that at a minimum, another year should pass before reconsidering a transplant. This event knocked the wind out of our sails; however, Tisha told us that she was committed, and she was not going anywhere. Did God send His angel, Tisha, to us to save Sam’s life?
Another year passes, and we travel to Lucile Packard Children’s Hospital for Sam to have another difficult, yet highly successful, tumor resection surgery. Everyone was amazed at how quickly Sam recovered, and the best news was that Sam’s tumor was now classified as benign. The Oncology and Kidney Transplant Team, as well as the surgeon, moved aggressively to consider Sam for a transplant (much sooner than Tami and I would have ever realized!). With this excitement, we wanted Tisha to do whatever she was comfortable with and to take as much time as she needed to get ready. As she had always said, she wanted to do what was best for Sam. Since the beginning, Tisha had been more worried about meeting our schedule and making it easier on us. She always wanted this to be something that Tami and I didn’t have to worry about.
Every couple of years, the Gappa family holds a family reunion. I won’t necessarily call them the older Gappas, but those Gappas “that have more life experiences than some of the rest of us” like to get into philosophical discussions at these reunions (as well as discussions that are not suitable for this webpage!). At the most recent one held last year, the discussion was raised as to which Gappas would we consider to be a Saint because they lived a Christ-like life or one in which God was ever-present in his or her words and actions. Many of you know that the Catholic Church recognizes many people as a Saint who have lived a life that serves as a reflection of God’s love for us. I think it is safe to say we have a new Gappa Saint! Saint Tisha! You, Doug, Haylee, Abby, and Reese are part of us forever………and you are LITERALLY a part of Sam! I realize the process to canonize a person for sainthood in the Church is a slow one; however, I think Rome needs to fast-track this one!
To Doug, Haylee, Abby, Reese, and the entire family, we will never be able to express our gratitude for what each of you have endured and given of yourselves to help us. You are an amazing family. You are a great example for us in how to live our lives for Christ and for each other.
Did God send His angel, Tisha, to us to save Sam’s life? Well, yes and no. She didn’t just save Sam’s life. Because God sent His angel, Tisha has saved TWO lives. She saved Sam’s life by giving her kidney to him and the life of another person in kidney failure who will receive a donated kidney that Sam would have received, if not for Tisha’s self-sacrificing act. I cannot think of a more gracious, selfless act of love.
Thank you for saving our son's life. We love you.
Tami and Jonathan
Tuesday, August 12, 2008 8:52 PM CDT
The surgeon, Dr. Concepcion, just came out to see us and told us these words:
Sam has a big, beautiful kidney!
What a great God we have!
Tisha continues to recover exceptionally well! You should see her! We snuck a peek at Sam in the PICU, while all the doctors and nurses get him situated in his room. We hope to get in there soon.
Keep Tisha and her amazing family in your prayers. Thank you for your prayers! Great things have happened, are happening, and will happen!
More will come later,
Jonathan
Tuesday, August 12, 2008 2:23 PM CDT
Tisha came out of sugery within the past hour. According to Doug, the surgeon said everything went great and it only took 1 1/2 hours! Praise be to God!
They have yet to see her yet, as they are prepping her in recovery.
Sam entered into surgery about 1/2 hour ago. It may take 6 hours.
Thank you for you prayers! Keep 'em coming!
Tuesday, August 12, 2008 9:31 AM CDT
Good morning. A very quick update. Tisha is now entering surgery. Her surgery is expected to last 3-4 hrs. Sam is scheduled for around noon time Pacific time. His surgery is expected to last 4-6 hrs. Please pray for the doctors and tranplant team to act safely, carefully, and precisely on Tisha and Sam today. Please pray for total healing for both starting today.
We'll keep you posted,
Jonathan
Monday, August 11, 2008 8:05 PM CDT
Just a quick update that we are still waiting for a room for Sam. We have been assured that one will open up tonight for him, we just have to wait.
On an ironic note, Tisha (Sam's kidney donor) has already received her room and is at the hospital.
This down time allowed us to spend a great afternoon with Tisha, Doug, Haley, Abby, Reese Young and Tisha's parents, La-La, and Boo-Boo. I think God planned it out this way. The kids had a great time, and everyone got the chance to enjoy the afternoon together.
I've had a lot of inquiries about this incredible person, Tisha. I will describe her in more detail later. Let's get through the transplant first.
I hope I will update this site prior to the surgery. If not, we ask for prayers for Tisha to get through the surgery safely and healthy.
We'll let you know more when we know more,
Jonathan
Monday, August 11, 2008 2:09 PM CDT
Just a quick update that Sam has NOT been admitted into the hospital as of this time. No room at the Inn!
All the beds were full yesterday, so we stayed another night at the apartment. That was fine with us because the doctors were not going to do anything to Sam yesterday. Why stay in the hospital when nothing is going to happen!
Tisha and her family have arrived, and everyone is attending appointments as we speak. Sam had a blood draw and an EKG performed today.
As soon as more develops, we'll keep everyone updated.
Jonathan
Tuesday, August 5, 2008 7:31 PM CDT
We have excited news for everyone: The kidney transplant team has scheduled Sam to receive a kidney transplant next Tuesday! What a blessing!
The doctors told us that Sam has done so well that there is no reason to hold off having the transplant any longer. Everything has fallen in place to move forward with the transplant now. It is scheduled for next Tuesday; however, there is a remote chance it could slide a day or so.
Grandma Selma and Grandpa Gappa arrived in Palo Alto yesterday, while Tami and Sam arrived. I'll arrive Friday. Sam is scheduled for tests beginning tomorrow, and he is to receive an MIBG scan on Thursday and Friday to establish a new baseline with his benign tumor. He will then be admitted to the hospital Sunday to begin the immuno-suppresant medication which will help prevent Sam's body from rejecting the new kidney. As we learn more and as more events unfold, we'll keep you posted.
Thank you for your continuing prayers! Your prayers have helped Sam heal and get him to this point! God is great! As we get settled in over the weekend, I'll provide a more thorough and updated entry prior to next Tuesday.
We'll keep you posted,
Jonathan
Sunday, July 6, 2008 12:15 AM CDT
We hope everyone had a great Independence Day! All is well with us. It's summer and it's definitely hot!
Sam is doing very well. As you can see from the new pictures, he's back to playing T-ball. His team finished the season last weekend, and he collected his first T-ball trophy.
Sam has been having his routine doctor appointments, and he remains stable and well. Tami has been keeping him busy with gymnastics, art class, and other activities which has been good for him.
His energy level appears to continue increasing, and he appears to be near the strength he was prior to surgery. His belly is still somewhat tender, which is very much expected (if it was me, I'd still be agonizing in bed!).
We are blessed and happy to be where we are. Sam is to continue healing and having fun, and that is just what we are gonna do!
Take care,
Jonathan
Sunday, June 15, 2008 9:12 PM CDT
Happy Father's Day!
We have a new word for everyone -- Ganglioneuroma. We like this word much better than Neuroblastoma.
Ganglioneuromas are composed of mature ganglion cells and are considered BENIGN tumors. Sam's tumor is now considered benign! The following statement is in the Oncologist's report: the remaining soft tissue is most likely to be mature ganlioneuroma as the multiple biopsies have shown from his recent operation.
We are so very thankful for all the incredible prayers! What an outcome!
This past week, we have been getting ourselves ingrained into our home routine once again. Sam continues to improve. He says his scar is not hurting as much as it did. He's back to wrasslin' me!
Tami is her incredible self. It's all the little things she does that allows Sam to get stronger and healthier.
We are very blessed to have each of you in our lives. Thank you!
Take care,
Jonathan
Thursday, June 5, 2008 10:25 PM CDT
Happy Thursday!
WE ARE HOME!
After Monday's nephrology apppointment and Wednesday's oncology appointment, everyone was very impressed with how Sam has recovered in such a relatively short period of time. Because of Sam's progress, they allowed us to come home. We arrived home a couple of hours ago. I'll update more at a later date with more details, but we are thankful and blessed to be home so soon. We could not have imagined Sam coming home this quickly, with such a successful surgery, and back on peritoneal dialysis this soon. Thank you all for your prayers!
Take care,
Jonathan
Sunday, June 1, 2008 9:29 PM CDT
Good Sunday evening. Sam, as well as all of us, have spent the past couple of days recuperating. Sam's energy level is growing, and his pain is subsiding; however, he still does have a fair amount of pain in his belly. Today, he actually was able to push himself up, and has been fairly active at a local park (but not playing very much on the playground). One thing about Sam, we don't have to worry about him being overly-agressive. He seems to know his body's limits.
With each passing day, Sam is eating more and getting back to his old self. We are trying to get him to eat more, specifically more protein, to help with his overall healing. His dialysis has been going quite well. What started out at 22 hours per day dialysis last week, now is at 14 hours per day. We will continue to adjust his dialysis over the next couple of weeks to return to his "normal" routine of 10 hours per night.
The trauma to Sam's abdomen had made it difficult for Sam to laugh. In fact, we were under strict orders from Sam to not make him laugh because it hurt too much. However, a magician paid a visit to Sam yesterday, thanks to David, Gayle, and Patty, and that seemed to be the remedy to heal Sam's abdomen and allow him to laugh without pain. It was good to hear that laugh of Sam's again.
As you can see from the pictures, Sam's body still has a ways to go; however, it is simply amazing that in just a little over a week, he is actually this well. Your prayers got his body on a fast track to healing! THANK YOU!
This next week, Sam has clinic visits on Monday, Wednesday, Thursday, and possibly Friday. We'll know more on how his peritoneal membrane is holding up through PD. We hope to get the final, final, final pathology report sometime this week as well.
We hope all is well with you, and we can't thank you enough for your love, prayers, and support!
Jonathan
Friday, May 30, 2008 7:12 PM CDT
Just a quick note today to say that Sam is officially out of the hospital! We are back in our apartment taking it easy this afternoon. We are scheduled to go back to the Renal Clinic Monday morning for a visit.
Sam has been walking, although a little wobbly. Actually, he's wobbling no worse than I am.
Take care,
Jonathan
Thursday, May 29, 2008 6:35 PM CDT
Hello to all on this Thursday. New pictures have been added. Each day Sam progresses further. Yesterday, he had an IV and his hemo-catheter removed. This was extremely painful to Sam, and I would not want anyone to experience having that type of catheter removed. However, that was a huge milestone. There is enough confidence that his PD catheter works that he does not need the hemo-catheter! The doctors originally predicted that Sam would be on hemo-dialysis (HD) for about 2 months while his peritoneal membrane healed. In fact, there was a significant amount of concern that his peritoneal membrane would never heal sufficiently resulting in never returning to PD. Yet another blessing!
Today, Sam had his central line removed, another extremely painful procedure. This central line was located on the upper left side of his chest, just below his neck. Like his HD catheter, it was stitched into him. Both the HD cath and the central line were several inches long (they looked several feet long to me!). Sam also was able to get out of bed, and by seeing the attached pictures, you can see the difference a few days have made! He also stood on his own for a brief minute today! That is remarkable progress! Another blessing!
The doctors are so pleased with Sam that, barring something unforseen between now and tomorrow, the plan is to discharge Sam sometime tomorrow! He will have to remain in the area for a week or so; however, there is no compelling reason for Sam to stay isolated in the hospital at this time! He can continue recovering at the apartment we are staying at, and he will have frequent clinic visits for the next week or so. That is something we could not have predicted a week ago.
The last bit of great news today is that the surgeon told us the pathology report concluded that the tumor is mature! This is exactly what we have been praying for! The last word will be with the oncology team on what would need to occur next to determine how to proceed with steps towards a kidney transplant. The next step for us is to attempt to schedule an oncology appointment.
Although there has been severe pain the last few days for Sam, the good definitely outweighs the bad. We could not have asked for more! God's work and the power of prayer has blessed us with so much!
We'll keep you posted,
Jonathan
Tuesday, May 27, 2008 11:31 PM CDT
Greetings for Tuesday night. Today has been a good day for Sam and us. Sam was awake for 7 hours, alert, and gaining strength! We also moved into a private room, which is like staying in a five-star hotel at this point!
The nephrologist, Dr. Alexander, has been so impressed with Sam that he bypassed hemo-dialysis altogether today and began Sam on a low flow peritoneal dialysis (aka PD)! This is a major step to having Sam return to PD permanently! Sam is on a low concentration for 22 hours straight. Some amount of blood is being removed from his peritonium, as part of this flushing out process. Sam is sore, which is to be expected. We are not allowed to laugh right now becausw laughing makes his belly hurt.
Sam's appetite continues to improve and he has for all practical purposes returned to his standard medicine routine.
Although we haven't really spent any time outside, you can understand why this is the most expensive place in the U.S. to live, the weather has been perfect.
I hope to take more pictures in the next day or so to show Sam's progress. It's because of your prayers that he is healing like he is!
Monday, May 26, 2008 7:31 PM CDT
Hoping you are enjoying your Memorial Day weekend. Sam was just moved out of the PICU about an hour ago. Saturday and Sunday were difficult days for Sam, which was to be expected because this was a challenging surgery. Lots of pain and nausea followed by hemo-dialysis which was hard on him.
Today is the first day Sam is able and allowed to eat. He has been alert, and we are starting to see a little of our boy back.
Sam also had his arterial line and urinary catheter removed today. His blood counts were stable enough that the nephrologist decided not Sam could skip hemo-dialysis.
God has been holding Sam throughout this. We are in awe.
Please pray for the many childen in critical care not only in this PICU, but in all PICUs.
Take care,
Jonathan
Monday, May 26, 2008 7:31 PM CDT
Hoping you are enjoying your Memorial Day weekend. Sam was just moved out of the PICU about an hour ago. Saturday and Sunday were difficult days for Sam, which was to be expected because this was a challenging surgery. Lots of pain and nausea followed by hemo-dialysis which was hard on him.
Today is the first day Sam is able and allowed to eat. He has been alert, and we are starting to see a little of our boy back.
Sam also had his arterial line and urinary catheter removed today. His blood counts were stable enough that the nephrologist decided not Sam could skip hemo-dialysis.
God has been holding Sam throughout this. We are in awe.
Please pray for the many childen in critical care not only in this PICU, but in all PICUs.
Take care,
Jonathan
Saturday, May 24, 2008 2:09 PM CDT
The attached pictures may be a bit shocking; however, Sam is doing as well as could be expected overall.
Last night, the surgeon told us that he removed about 1/2 the tumor. The remaining half was on the aorta. He took multiple slices of the half that was removed and sent them to Pathology. The initial pathology indicated a mature (dying) tumor. The surgeon's observation of the tumor inside Sam was that it was like a piece of wood. He had to use a saw to cut it out. If the pathology had come back indicating an immature (malignant) tumor, he would have taken the risk to remove it from the aorta. However, since this was not the case, he did not believe it was worth putting Sam at risk to remove the remaining amount, and we wholeheartedly agree. The surgeon also indicated this was a very difficult surgery (he looked very tired to us!).
The official pathology report should be out either Tuesday or Wednesday giving us more detailed information on the characteristics of this tumor. Hopefully, it will coincide with the initial reports.
Today, Sam is in and out. He remains in the PICU at this time, and we are not sure when he will leave. He began his Hemo-dialysis treatment this morning, and everything appears to be going well. The Nephrologist and the surgeon came by to check on Sam, and they are pleased with how well he is handling things. They noted he appears to have a high threshold for this type of pain.
Not enough thank you's can be said by us to you. Every single prayer and thought has gotten Sam and us through this. Sam cleared a major hurdle yesterday. He still has a long way to go, but this is a marathon, not a sprint.
We'll keep the updates and pictures coming.
Saturday, May 24, 2008 0:08 AM CDT
A very quick update for now. Sam came out of the OR about 9pm PST. He is currently in the PICU. Lots of good news and prayers answered. Most of the tumor was removed. Initial pathology results and characteristics of the tumor show a mature, dying tumor. The surgeon said his peritoneal membrane looked beautiful. The surgeon also said this surgery was so difficult that it took a year or two off of his own life!
Sam is in a lot of pain as expected but looks much better than we anticipated. He'll be in the PICU for at least a day.
I promise to give a more thorough update later. Gotta go for now.
THANK YOU ALL FOR YOUR PRAYERS! THEY HAVE BEEN ANSWERED!
Friday, May 23, 2008 5:40 PM CDT
Sam was delayed getting into surgery. He rolled in at 3:15 PST.
He went 15 hours with no food or liquid and was such a trooper!
We'll keep you posted,
Jonathan
Thursday, May 22, 2008 11:29 PM CDT
Hello to all. Sam was admitted about 30 minutes ago. Right now, the surgery is scheduled for noon PST Friday.
Thank you for you prayers!
We'll keep you posted.
Jonathan
Monday, May 19, 2008 9:02 PM CDT
New pictures added!
To bring everyone up to date, Tami and I have agreed to proceed with a tumor resection surgery for Sam scheduled for this Friday, May 23rd at Lucile Packard Children's Hospital at Stanford University (Palo, Alto CA). For the past three years, an approx. 2.5cm sized neuroblastoma tumor has remained in Sam and has not calcified (i.e., died off). This tumor remains active; however, it has not spread or grown. In order for Sam to move forward with a kidney transplant, he has to be free of this tumor. After numerous consultations with doctors and surgeons, as well as lots of praying, we've decided to move forward with the surgery. It is not known how long recovery is to take (it all depends on how difficult the surgery is); however, a best guess would be that Sam would remain in the hospital approximately 2-3 weeks. As you can tell by the new pictures, Sam's not worrying about it too much. So many people have been praying for us it has been unbelievable. We would like to tap into this incredible network for some specific prayer help.
We ask prayers for: God to guide the surgeon's hands to remove ALL of the tumor as safely, quickly, and easily as possible; for Sam not to receive any complications prior to, during, and post surgery; for a quick and speedy recovery; for his peritoneal membrane to healing completely so that he can go back onto peritoneal dialysis as soon as possible; for Sam not to be scared during this time; and for all three of us to come home healthy and quickly!
We'll keep this site up to date as Sam's surgery and recovery begins.
Take care,
Jonathan
Sunday, April 27, 2008 3:29 PM CDT
Good Sunday afternoon! We hope all is well with you.
In our previous update, we stated that Sam was scheduled on April 30th to have surgery to remove remaining tumor cells. Well, this past week we decided to postpone this surgery. Since it was noted through additional testing that the tumor had no grown or spread, we felt comfortable taking a little more time to think this over. Quite honestly, we weren't ready to rush into surgery this quick. We wanted a little more time to pray about it, think about it, and get as much information together to make the best decision possible.
Overall, Sam is doing well. He finished his second soccer season last week and is scheduled to begin T-ball in a week or so. Tami has been very busy with her St. Vincent de Paul charity work, and we are just enjoying this time.
If we decide to reschedule the surgery, we'll let everyone know.
Take care,
Jonathan
Sunday, April 6, 2008 1:26 PM CDT
Good afternoon! Hope everyone is doing well. We had a busy couple of weeks of Sam having scans, tests, and doctor appointments. I'll summarize the best way I can.
A couple of weeks ago, Sam had a head to toe CT scan, bone scan, and bone marrow biopsy. This in effect was Sam being re-diagnosed for cancer. The best news of all came back indicating that other than the remaining tumor cells present, no new cancer cells were noted anywhere in Sam in the tests mentioned above! Praise God! It appears that any concern of potential growth of those tumor cells have been addressed.
We've had consultations with Oncology, Nephrology, and the Pediactric Surgeon that performed Sam's resection in 2005. At this time, everyone is in agreement that as long as tumor cells remain active in Sam, he will not be allowed to move forward with a kidney transplant. After multiple discussions on surgery options, risks, and complications, we have decided to move forward with surgery to remove the remaining tumor. We believe this is the best option to answer the question if this tumor is going to come back or not. It will not be an easy surgery by any means, but we feel it's the best course of action.
As of now, surgery is scheduled for April 30th at Lucile Packard Childrens Hospital at Stanford. We agreed that it is in Sam's best interest to have the surgery performed at the same place his eventual transplant will occur.
Sam has been doing great. He's been active playing soccer, tennis, and many activities throughout the week. He's been a lot of fun.
As soon as we finalize some more details, we'll pass them along. Thank you for your continuing prayers! We feel them everyday.
Please pray for Lukas Macdonnell, a little boy fighting neuroblastoma. You can see his Caringbridge website by typing lukasmacdonnell.
We'll keep you posted,
Jonathan
Sunday, March 9, 2008 1:28 PM CDT
Good Sunday afternoon!
I hope everyone is adjusting to daylight savings time well. I will try my best to summarize our trip to Lucile Packard Childrens' Hopsital at Stanford, which occurred this past week. We went to Stanford (Palo Alto CA) last week to have some additional tests performed on Sam to determine if he is ready to proceed with a kidney transplant. Thanks for your prayers while we were in California.
We come home with much less excitement than we went there with. Although Sam got through the scans well, we did not get the news we had hoped for. The previous scan showed a "hot spot", meaning the residual cancer cells were showing some activity or uptake to the dye. The scan performed last week showed the tumor cells have actually gotten "hotter". We are somewhat far out from a possibility of cancer recurrence, but nonetheless it is a possibility. So instead of going to get some news on the transplant, we face a potentially larger issue.
On Monday, after meeting with the Doctors, Sam had an additional scan to determine if any of that hot spot has grown larger and can be quantified with a measurement. This scan proved to be stable (no new growth noted on scan), which is good. We will be starting from scratch. Sam will have a bone scan, bone marrow biopsy, and a few other "marker" tests to see if anything is potentially popping up anywhere else.
Depending on what the results are from these tests, coupled with what the doctors ultimately agree on, we have a some decisions or paths to decide:
1) To remove any question of his cancer coming back, have a surgery to resect the remaining residual tumor. This would be scheduled after the above tests are done and reviewed. The surgery would take place at Stanford by the same surgeon that would ultimately do the transplant. The surgery would be a risky proposition because the residual tumor is in a difficult vascular region of the abdomen (and for that very reason, it was not taken out the first time). Beyond that, if the surgery is successful, Sam would have another type of catheter implanted for hemo-dialysis (which would result in Sam having to go to a dialysis clinic 3 times/wk). Can I just say, we are not looking forward to that at all. This would be for several months, and if things go well, he can switch back to the dialysis he has been doing at home for the last three years. However, the nephrologist told us that in cases where there is scar tissue in the abdomen, it is very hard to go back to peritoneal dialysis. Hopefully within a year or so, we can then look to the idea of a transplant.
2)If nothing else shows up in the additional tests, we can wait and do another MIBG scan to follow the "hot spot" and continue to watch it and let time pass. After talking with Dr Goldman, one of Sam's Texas Oncologists, he is pretty confident that what we will find is a residual, maturing neuroblastoma which would not need any clinical attention.
What we don't want is to have the return of the neuroblastoma, which we can only pray will not come out in any of these other tests.
I guess we could say that we have come home as unclear as when we left. Whatever the case, things may get a little more complicated for the next few months; however, Sam had hisfirst soccer game of the new year yesterday, and he is looking forward to a great season, as we are! We are very blessed to have this little guy!
Your prayers are welcome.
We will let you know what else we find out.
Thanks,
Jon, Tami, and Sam
Sunday, February 10, 2008 6:27 PM CST
Hello everyone!
We hope 2008 is off to a great start for everyone. I apologize for the long lag time in updates. I've been scolded by several people, especially about the need for new pictures, so they have been added!
We are doing well. As you can see from the pictures, Sam looks good and is having fun. Although Sam is not enrolled in Pre-K, Tami has him heavily involved in a number of activities. Throughout the week, he's involved in art and handwriting class, ice skating lessons, music class, and soon, tennis lessons. Soccer will start again in March, and boy, Sam is ready to go! He's counting down the days until soccer starts.
At the end of February, we will be travelling back to Stanford where Sam will undergo another MIBG scan. We have spoken to the Nephrology and Oncology Teams out there who have told us that the Tumor Board is torn between moving forward with a transplant this summer and waiting until next year. As Sam is the first case known of his particular situation (i.e., Stage 3 bi-lateral Neuroblastoma coupled with renal failure), they are proceeding with caution. Hopefully, the MIBG scan performed by the Stanford team will give the doctors a little more clarity about how to proceed. We are praying that this scan will indicate the tumor is maturing/dying/is gone.
Sam loves to play Go Fish. It has become almost a nightly ritual for us. Maybe developing into a card shark is in his future....who knows.
This month is the third anniversary of Sam's last round of chemotherapy, meaning that it's been three years since any change in the size of his tumor. Each passing year means there is a lesser chance of the tumor coming back.
Thank you for your continuing prayers. We ask for prayers that the MIBG scan goes perfectly and that the results will indicate the tumor is gone!
We'll keep you posted,
Jonathan
Sunday, December 16, 2007 6:51 PM CST
Season's Greetings!
We hope everyone is doing well this season and enjoying the holidays. As you can see by the pictures, Sam's enjoying this month of his birthday and Christmas!
Last update, I reported that Sam received an MIBG test which indicated the residual tumor was gone. Well...........he received a CT scan a week or so ago and that test revealed those tumor cells appeared to still be there. I apologize for a "false positive" on the last update. Obviously, that was information we did not expect nor want to hear. In talking to the doctors, the MIBG test is a nuclear test. As one doctor stated, "If you scramble the letters from the word 'nuclear' you can create the word 'unclear'". Which is precisely what can happen in an MIBG test. There are so many variables that it makes it difficult to assess correctly. That is why a CT scan with contrast was performed, which typically indicates the situation a little more accurately, and unfortunately, indicates that remaining tumor remains present.
The good news is that the remaining cells have not changed since the last CT scan, nor have they changed since April 2005. That is encouraging because the longer one goes without any change in tumor cells, the less likely the tumor will come back.
Enough of the medical mumbo-jumbo. It's almost Christmas. Sam's made his list for Santa, and he is ready to put some cookies out.
Sam turned 4 on the 5th, and he had a great time partying at the zoo. He enjoys all the animals, especially feeding the birds in the aviary. The picture of Sam with his birthday cake shows Sam's skills at decorating cakes. Needless to say, it tasted great, and I am wearing larger pants because of it.
We hope everyone has a great holiday season, and we wish you all the best. Thank you for your continued prayers, and we'll keep you posted on what happens next.
Take care,
Jonathan
Sunday, November 11, 2007 9:24 AM CST
Good Sunday morning!
Wow, it's been a while since our last update. We hope everyone is doing well. From the last update, we stated Sam was going to have a follow-up MIBG and CT scan to determine what was happening with the remaining tumor. Let me quote the report we received:
"No evidence of metastatic/recurrent disease in the chest, abdomen, or pelvis."
You could not have prayed for a better statement. This means that no evidence of the remaining tumor could be found with these two tests! Praise God!
More than likely, this is the first time in Sam's life that he has no cancerous cells. What a miracle! Thank you for your prayers! We've been just trying to enjoy this moment for a while. God is great!
In addition to celebrating this step, Sam had a great Halloween. As you can see by the pictures, he took in his character in full force. Thanks to Roxanna and Paul, Sam was outfitted as Sully, a character from the movie Monsters Inc. As a result of that, Tami's creative juices flowed (actually overflowed), and she created, literally, my costume as Mike Ritowski, Sully's best friend. Green fur was flying all over our house. Tami became Boo, the little girl from the movie. Sam was a hit at Southwest Airlines on Halloween. Flashbulbs were flying when Sam walked into a room or down the hall.
Halloween night, Sam received so much candy that he couldn't carry his bucket anymore. I better go to the dentist soon because I'm sure I'm gonna get a cavity from that candy.
So, what is the next step since we received such blessed news about the scans? Well, we're working on that right now. There is a lot of coordination (meaning, Tami is trying to herd the doctors and nurses together) between Stanford and Dallas. Another separate CT scan is to be ordered for sometime in December. This scan is to ensure everyone is being as thorough as possible that no evidence of the tumor cells can be found before moving forward with a transplant. Assuming that this next scan's results are consistent with the previous scans, then we anticipate a trip to Standford in January to meet with the Oncology and the kidney transplant team.
We could not have prayed, hoped, and asked for anything more that what those results told us. Thanks to each of you for all your praying! They have truly led to this incredible result! It is truly a miracle! Please continue to pray for all those who are ill and/or afflicted.
Take care,
Jonathan
Monday, September 3, 2007 1:22 PM CDT
Happy Labor Day!
We hope all is well with you. It's been close to two months since our last update. Overall, Sam is doing pretty well, and we are looking forward to the Fall. As you can tell by the pictures, Sam is getting ready for soccer!
During July and August, we spent time in Ohio visiting the Medvin and Antonucci families and friends, and we spent time in Oregon visiting the Gappa family. It was good to get out of town for a while and enjoy a little cooler weather.
During the trip to Oregon, Sam developed peritonitis, an infection of the peritoneal membrane. We don't know the exact cause of the infection; however, the longer one is on dialysis, the more likely the infection is to occur. It causes great pain in the abdomen, as well as fever and other ailments. Luckily, it was caught early, and is being treated for ever since it occurred. Needless to say, Sam has been taking a large number of antibiotics (in addition to all his other medications), and he is almost through with them.
We have enrolled Sam in soccer at our local YMCA. Soccer is to begin in the next couple of weeks. As you can see from the pictures, he is ready to go! He will be playing on a team of 3-4 year olds, so this ought to be very interesting.
In the middle of September, Sam is scheduled to have the next series of scans to determine if any change has occurred with his remaining tumor. We are praying mightily that the tumor has shrunk and/or calcified. The outcome of those scans will determine what will happen next.
Thank you for continuing to keep us in your prayers! We are blessed to have had such a good time this summer enjoying Sam! We ask for prayers for all those who have been diagnosed with neuroblastoma.
Take care,
Jonathan
Sunday, July 8, 2007 7:22 PM CDT
NEW PICTURES ADDED!!
Happy Sunday! We hope your summer is going well. We have been experiencing a very atypical summer here in Dallas with weeks of rain and mild temperatures. We don't know how to act with all this rain!
For the most part, we have been taking it easy. We decided to get out of town and spent a few days on Hilton Head Island, South Carolina with Tami's brother Larry and his family. Sam went to the beach for the first time and got ankle deep in the ocean.
Baseball has become Sam's new sport of choice. Based on his hitting style, he is a power hitter that likes the ball on the outside corner of the plate, and he likes to pull it down the left field line.
On the medical front, Sam is doing relatively well. He has had an infection of his catheter site that appears to be healing. This seems to be the first significant infection he has developed, and we are trying to minimize the chances of this happening again. Site infections are a matter of when, not if. With having this catheter for over two years now, it is something we will have to watch closely. Sam's next Nephrology visit is this week. He will visit the Oncologist in September.
Tami is doing everything perfectly as usual. I am blessed that's for sure.
The big news this summer is that Sam is potty trained! Whew. Not having to buy so many diapers is like getting a raise! Hopefully, diapers are gone.........unless I need them when I get older!!!!!!!!! I'll feel sorry for Tami when that happens!!!!!
God has been so good to us, and we thank each of you for keeping us in your prayers!
Take care,
Jonathan
Monday, May 28, 2007 8:23 AM CDT
Happy Memorial Day!
Wow, it's been a while since I've updated this webpage. I apologize for the infrequent updates.
As we had mentioned in previous updates, since Sam was two years removed from his cancer treatment, we were hopeful that Sam would be considered eligible for a kidney transplant this summer. In order to be given the final "ok", additional tests were ordered to review whether the cancer cells were active or not. Sam had to undergo a 4 day scan that was extremely taxing. This nuclear medicine test showed some "Hot Spots", defined as residual Neuroblastoma tissue concurrent with what was left behind from the tumor resection two years ago. This is more clearly defined as "residual active tumor" on the scan report.
Let me first say, they will not and do not intend to treat Sam for this. They wish to closely follow him with lab work and scans for a period of time (which has not yet been defined) and then decide what is the next best course of action. This may be to not do anything at all. In fact, when he was diagnosed in 2004, he had a "Favorable, differentiated tumor with intermediate risk". What that basically means to the rest of us: There was a favorable chance the tumor would mature and go away by itself. Unfortunately, it was too big for them to leave alone and watch it. Now it's not.
So why not proceed with this much needed transplant:? When you immunosuppress a person (which is the anti-rejection medicine given for a transplant so the body will not reject the foreign invader) you run the risk of cancer. Sam's risk is much higher since he has these cells in his body.
For how long? It has been determined that it would be best for Sam to wait another year, and for him to receive scans every three months to monitor the hot spots. It will just depend upon what they see while he is monitored and how well he continues on dialysis.
Why not go ahead with it anyway? Well, we could lose the transplanted kidney, assuming if it had to be exposed to chemotherapy and we would be starting from scratch again. That is too risky.
The bottomline is that Sam is a very unique case of Stage 3 Neuroblastoma without Adrenal Glands coupled with End-Stage Renal Disease all wrapped into a three year old boy. There is not a history of cases for the doctors to rely upon, and Neuroblastoma is a very sneaky, tricky form of cancer. As one nurse noted, "He has the biggest file we've ever seen!".
We are very thankful that God is having the doctors take their time and think this through. No one wants Sam to have a transplant more than Tami and I do; however, it should not be rushed into and risk cancer again.
Other than that, Sam is doing very well. He is learning how to play baseball, and he is doing quite well based on the number of balls he has hit (and I have the bruises on my shins to prove it!).
Thank you for your continued prayers! They have been a great source of strength. We also ask you to continue praying for the Reyes family as they continue to cope with the loss of Lisette.
Take care,
Jonathan
Sunday, April 1, 2007 2:39 PM CDT
Happy Palm Sunday!
NEW PICTURES ADDED!
We hope everyone is enjoying Spring. It's been about a month since our last update. Today, marks the second anniversary of Sam's surgery to remove his tumor. As a result, he has been cancer-free for two years! We are so very thankful to God in allowing Sam to remain here with us! It wasn't an easy time those days following the surgery: 44 days in the hospital, 28 days on a ventilator, 28 days sedated, 14 IVs, and 2 different hospitals. Now, he wants to play soccer, play with tools, and play on the computer (yes, at age 3 he's figured out how to use a computer!). We are so very blessed to be able to experience these things.
This is also the two year anniversary of Sam being classified in End Stage Renal Disease (kidney failure). Never would Tami and I have ever fathomed that we would be performing daily dialysis for two years! Back when we were being trained to administer dialysis, we just kept looking at each other thinking, "Just a couple more days and his kidneys are going to start working, so we really don't think he'll need to go home on dialysis." Now, when it's time to "hook" Sam up to his "machine", he pops up in his bed, hands us his PD cathedar, and covers his mouth as we connect him to his dialysis machine. God has given us so much to get us through this part of the journey. God gave me Tami to get through this!
On the health front, Sam has had good weeks and some not-so-good weeks. Last week, he was admitted to the hospital for a couple of days because his potassium was extremely high. The poor boy had to take a few nasty medicines and two enimas to help drive the potassium down to a more normal level. We were exhausted once we left the hospital, and were very happy to get home! As I think most people have lately, Sam has been fighting off viruses and colds. His blood pressure has been sporatic and difficult to maintain at a consistent level. A variety of medicines have been added and deleted to get his pressure somewhat stable. This is more art than science.
Sam told me that he wants to be an astronaut and a construction worker. I think he can do both. My guess is that he can help build some new space colony on the moon when he gets older.
We hope everyone has a great Easter and enjoys springtime. Thank you for your continuing prayers! Sam's improvement is the result of them!
Take care,
Jonathan
Sunday, February 18, 2007 4:34 PM CST
NEW PICTURES ADDED!!!
Good Sunday afternoon! We hope everyone is doing well. As you can see from the pictures, it was a nice enough day for Sam to go down to the lake and try to land a big fish. Unfortunately, the fish must have been on the other side of the lake. We'll try again to land a big fish.
This past week, we traveled to Lucile Packard Children's Hospital at Stanford. The pediatric kidney unit reviewed Sam's case and is in the process of determining if there is a good match from a number of potential donors who have come forward willing to provide Sam a kidney. They also wanted to see Sam himself, as well as discuss with us the transplant process.
The doctors, nurses, and transplant coordinator were very impressed with how well Sam looked and acted. They were also impressed with his energy level and how well he ate. All indications are that they are in favor of Sam receiving a transplant soon. The work to be done is to complete their assessment of the different donor candidates. This will take several weeks. One statement by the nephrologist summed it up. "You want to do a transplant when Sam is at his healthiest and strongest". I think Sam is at that point.
While in Palo Alto, we took Sam to a local wildlife refuge, and we spent time looking at places we could live while out there for the transplant. It would be expected that Sam would remain near the hospital for approximately 100 days. The transplant process is no walk in the park. It will be somewhat grueling; however, it is the next step in getting Sam on the path of long-term recovery.
Thank you all for your continuing prayers. We are very lucky for Sam to be at this point. We pray that the doctors, nurses, and us think through these decisions and make the correct choices for Sam.
Jonathan
Sunday, January 28, 2007 3:08 PM CST
Good Sunday afternoon!
We hope all is well with you. It has been chilly and cloudy here the past couple of weeks. Sam keeps asking, "Where is the sun?". I think he enjoys the sun and outdoors more than anything else.
Overall, Sam is doing well. His blood pressure continues to be a challenge in terms of keeping it at a relatively normal level. Sam had his monthly nephrology visit this past week, and the doctor has recommended to us to alter his dialysis concentration in order to pull off more fluid during his nightly dialysis. The more fluid his body maintains, the higher the blood pressure.
Sam has asked, "Is Christmas almost here?". We figured January would be a dull month for him after all the excitement of December.
In terms of his transplant timetable, it appears we may be taking a trip out to Lucile Packard Children's Hospital (at Stanford) in the next month or so. Nothing is definite; however, we have had conversations with the transplant team there, and as of today, everyone remains optimistic that he will be considered eligible for a transplant in the next few months.
As you may recall, Sam received numerous blood transfusions during his chemotherapy and tumor resection surgery. Because of this, the possibility existed that his blood would have developed a certain amount of resistance to certain types of blood during a future kidney transplant. Sam had blood drawn a week or so ago, and we recently received a call from Stanford telling us that their testing indicated that his blood has not developed these resisting agents, which means it will hopefully a little less complicated to match and treat his potential rejection of a new kidney!
Thank you all for your continuing prayers! We are so thankful for everything that is happening! Please continue to pray for all those kids who do not have the support and means to be treated properly.
Take care,
Jonathan
Monday, January 15, 2007 9:10 PM CST
As you have read at this website for some time, we have been asking everyone to keep Sam's friend Lisette in your prayers. Lisette was diagnosed with Ewing Sarcoma the same week as Sam was diagnosed with neuroblastoma in September 2004. It was comforting to us at such a difficult time to see an incredible person battle her issues with a smile on her face.
Lisette passed away early this morning. She was 11 years old.
Over the past 2 1/2 years, Lisette endured numerous treatments and surgeries. In 11 short years, Lisette impacted more lives than most people do in an entire lifetime.
You can read more at www.caringbridge.org/tx/lisettereyes
She and her entire family have been a source of inspiration for countless people, including us. Her family remained positive and have an incredible love for God.
Please continue to keep Danielle, Carlos, and Elijah in your thoughts and prayers.
Saturday, December 23, 2006 1:33 PM CST
HAPPY HOLIDAYS!!
New pictures have been posted.
We hope everyone is doing well. Christmas is a couple of days away, and Sam is ready for Santa to come to his house!
It's been a busy month starting off with Sam's birthday on the 5th. Sam and his friends, Warren and Adam, had a joint birthday party at a small "farm" in town. All the kids rode ponies and were able to feed all kinds of animals. Needless to say, you can never go wrong with kids feeding animals.
Earlier this week, Sam had a "minor" surgery to remove his port-a-cath. This port is a small tube that runs into one of his arteries to allow the doctors quick access to draw blood as well as administer medicine if needed. This port was installed in September 2004 when Sam began chemotherapy. He received all his chemo through this port. Unfortunately, this port failed last week, which is not uncommon given how long he has had it. The surgery itself was about 30 minutes or so; however, it was a long wait at the hospital. All is good now, and Sam is back to being his old self.
As you can see from the picture, Sam visited Santa Claus. What has become our annual tradition is to visit the Medical City Christmas Party. This has been a good time for us to see several kids and families who were also going through chemotherapy when Sam did. It is so good to see all the kids doing well. We all have so much to thank God for! That same day, we attended the Neiman Marcus/Childrens' Medical Center Christmas Parade. Sam loved watching all the floats go by.
Sam has written his letter to Santa, and he is "to be a good boy" in order for him to visit. I think Santa will be good to Sam.
We have so much to be thankful this year, we don't even know where to start. Well, we start with thanking God! He has taken such good care of us. We are so thankful to have each of you in our lives and thank you so much for your continued support and prayers!
Please continue to pray for Sam's friend Lisette Reyes, as she still struggles through many health problems. You can visit Lisette's page at: http://www.caringbridge.org/tx/lisettereyes
We hope each of you have a blessed season and enjoy the holidays!
Jonathan
Sunday, November 26, 2006 7:06 PM CST
Good Sunday evening, and a belated Happy Thanksgiving!
New pictures have been posted!
We hope all is well with each of you. We had a great Thanksgiving here, with many family and friends. Great grandma Theresa Antonucci came down from Cleveland to spend Thanksgiving with us. Sam did run a fever and had an upset stomach the night before Thanksgiving, which required us to take a sample of his dialysis fluid to the hospital lab late Wednesday night; however, the "bug" Sam did not last for long, thank God. The weather has been incredible, and we have been able to spend a lot of time enjoying the fall season.
This past month, I spent a week or so in China on business. Tami and Sam traveled to Cleveland to visit the Medvins, Antonucci's, and many friends. I very much did not like being away that long; however, it was good for Tami and Sam to spend some time back in Cleveland.
Sam is getting ready for Santa Claus! He is getting so excited to have Santa come down the chimney and bring presents!
For the most part, Sam's health remains fairly stable, and we are so very thankful for this. We don't want to wish time to go by quickly; however, we are ready for next year to get here soon so that he can begin the process towards a kidney transplant.
Thank you for continued prayers for Sam and us! We have been so very fortunate to have Sam is such good health for what he's been through! Please continue praying for Sam's friend, Lisette, as she remains in the hospital recovering from her multitude of issues related to Ewings Sarcoma.
Take care,
Jonathan
Tuesday, October 17, 2006 3:47 AM CDT
We hope everyone is doing well! I apologize for taking so long to update this website. Time has been flying by, and before I knew it, it has been 2 1/2 months since I last updated this page!
Sam has been doing very well. Now that the weather has cooled considerably, we have been playing outside as much as possible. Sam's favorite pastime these days is kicking soccer balls and beach balls back and forth. The kid has a strong leg!
Tami has Sam involved in a number of activities during the week. One day is gymnastics, another day is music class, and another is swimming class. Right now, he is taking a private lesson for swimming because he is not allowed to be in a pool with other kids. The tube site in his belly for his dialysis must stay fairly clean, and being in a pool with other kids would put him in too much risk for infection. So far, he has really been enjoying it.
On the health front, he appears to be relatively stable these days. We are so very thankful. His blood pressure still remains a daily battle; however, it has not limited him in what he can do. Since July, it appears he has grown approximately an inch, which is more than he grew in the previous year!
Tami remains as wonderful and beautiful as ever. She has done an amazing job integrating this boy into so many things these days to give him some sense of normalcy.
With Halloween in a couple of weeks, we are getting geared up for the big event. Sam already has his costume -- he is going to be Buzz Lightyear (from the movie Toy Story). He has been wearing it quite a bit, and we have been practicing for Trick or Treatin'!
Thank you all for your continued prayers! This period of "calm" for us has been extremely nice. We are enjoying this time knowing that sometime next year, Sam will begin getting ready for a kidney transplant. Please continue to pray for Sam's friend, Lisette Reyes, as she continues to heal from her treatment program, which has lasted several months.
Take care,
Jonathan
Sunday, August 27, 2006 3:46 PM CDT
Good Sunday afternoon!
New pictures have been added! We hope everyone is well. Over the past few weeks, we've just tried to stay cool. It has been a very hot August in Dallas. Although we went to Cleveland a month ago, we decided to get out of town again (and get out of this heat!), so we went to Springfield, Oregon to visit Grandma Selma and Grandpa Gappa. The cool temperatures did us all a world of good.
On August 18th, Sam had a CT scan and EKG test as part of his routine cancer treatment follow-up. Continued good news, Sam's tumor has not returned! The doctor did note that the tumor measured approximately 1mm different than before, but he also noted more calcification of the tumor (i.e., dead tumor); therefore, he was not worried in the least. Also, these types of scans depend on things such as positioning, which means that the 1mm in change could be the result of a different angle or Sam's position from the previous scan. Another scan is to be scheduled in 4-6 months. In relation to the EKG, we are still waiting on those results.
Sam continues to do amazingly well with the daily shots of his growth hormone. I never would have imagined he would handle these this well. Just goes to show you God does not give you more than you can handle.
As you can see from the first picture, Sam liked riding Grandpa's riding lawnmower, more appropriately known as "Grandpa's BIG RED TRACTOR". This became nearly a daily occurrence, and I think Grandpa better never sell the "BIG RED TRACTOR".
This next week, Sam has his monthly nephrology appointment, and we are hoping to hear more about the next steps towards his kidney transplant process for next year.
Thank you for your continuing prayers. We constantly hear from people who are praying for him and us, and we are so very thankful. Please continue to pray for Sam's friend, Lisette Reyes, as she continues her treatment for her bone marrow.
Take care,
Jonathan
Monday, August 7, 2006 7:42 PM CDT
Good Monday evening!
We hope all are doing well this summer. I've added pictures from our trip to Cleveland in July. As you can see, Sam had a great time at the Our Lady of Mt. Carmel Bizarre & Carnival. He could have ridden the car ride all night long!
Overall, he is doing well. His blood pressure continues to be a challenge; however, you would not know it was a problem by the way he acts! We began his growth hormone medication which consists of him receiving a daily injection. He is one tough kid. Sam will just say, "Let me hold you". He grabs onto us, then we give him his shot. I think God took care of us on this, knowing that we were reluctant to begin this for some time. It appears that it may be working as Tami and I measured him the other day, and it appears that he has grown more in the last three weeks than he has in the last 15 months!
As mentioned previously, we spent a week in Cleveland visiting family and friends. We had a great time, and it was good for Sam to spend some time with all his cousins, aunts, uncles, and Grandmothers!
Thank you for your continued prayers! Please pray for Lisette as she continues her bone marrow treatment. Thank you for your prayers of strength!
We'll keep you posted,
Jonathan
Tuesday, July 4, 2006 1:50 PM CDT
Happy Fourth of July!
Wow, it's been almost two months since we updated the page. New pictures have been added to the site. We hope everyone is having a great summer.
Over the last couple of months Sam has been busy. Mommy has been active in getting Sam more involved with a variety of activities, such as music classes, zoos, playing with his cousin Jacob, etc. He even has gotten in a pool a couple of times, although we have to be extremely careful with that.
From a health standpoint, he has been relatively ok. His blood pressure has risen lately, and the doctors are trying to adjust and add medications to get it in more control. Unfortunately, with kidney failure comes high blood pressure. Currently, he is taking five blood pressure medications. Towards the end of July, Sam is scheduled to have a follow-up CT scan to ensure no cancer has returned. We are hoping that in the next month or so, we will begin our counseling with the transplant nurse, which is the initial steps towards a kidney transplant. The timetable remains scheduled at next year for a transplant.
In June, we were invited to Washington D.C. on behalf of Medical City Childrens' Hospital for Family Advocacy Day on Capitol Hill. This was a very unique experience. We had meetings scheduled with aides to Texas Senators Kay Bailey Hutchinson and John Cornyn, as well as the aid to Representative Pete Sessions. The focus of these meetings was to discuss the importance of childrens' hospitals and the needed Medicaid funding for childrens' healthcare costs. An astonishing number of children are on Medicaid and need Medicaid because the reality is that there is absolutely no way the average family will ever be able to pay for the bills associated with the catastrophic situations many of these children are in (and at no fault of his/her own). There were 34 families representing 34 states. In our estimation, Sam looked to be in the best shape, and we have God to thank for that! Although I am no fan of politics, this was a very rare chance to meet the people we elect to discuss the job they are to do.
After the Capitol Hill meetings, we spent time in Washington D.C. with Grandma Selma, Grandpa Gappa, and Grandma Rosemary touring museums and monuments. I think Sam's favorite thing to do was to get on and off the Metro subway and ride the escalator down to the subway! Sam also was a big fan of the Smithsonian Air & Space Museum and the Natural History Museum.
On its opening weekend, we took Sam to see the movie Cars. He did very well through most of the movie, and as you can see by the pictures, he is a big fan of the Cars characters.
We are staying busy in the summer. Next week, we are visiting family and friends in Cleveland and in August visiting family in Oregon (we are trying to get out of the heat here!).
It's amazing that this time last year, Sam was home from the hospital, but because of the severity of the surgery, he was basically starting out as a new-born again. What a year! Thank you for your prayers! Keep them coming because they are working! Please pray for Sam's blood pressure to lower and to STAY lower! Please pray for Sam to continue getting stronger and healthier in preparation for his transplant next year (we hope!). Also, please pray for Sam's friend Lisette that she continues getting stronger and recovers from her treatment!
Take care,
Jonathan
Sunday, May 7, 2006 7:42 PM CDT
Good Sunday evening!
We hope everyone had a wonderful Easter. As you can see from the pictures posted, Sam had a great Easter. He had lots of practice Easter-egg hunting, and then on the big day, he and his cousin Jacob hunted for a bunch of eggs in the backyard.
Overall, Sam is doing well. He continues doctor visits to the oncologist, nephrologist, and endocrinologist. At this point in time, everyone is pleased with how well he is doing and how well he handles everything. In terms of a kidney transplant, nothing new to report at this point. It will probably be at least a few more months before any significant decisions and/or changes will be made. The focus right now is for Sam to continue healing from everything he went through for the last 18 months.
Sam has become a very talkative two year old. He can name his different medications and what they are used for. He even knows which ones are "the nasty ones".
We wanted to say a special thank you for all of those who coordinated, participated, and/or donated money in honor of Sam for the Relay For Life event a couple of weeks ago. The team honoring Sam raised the most money of any team participating in this event! It meant so much to us to have Sam honored.
We hope everyone is doing well. Thank you for your continuing prayers! God's work is being done, and your prayers have made Sam incredibly strong! We are so very lucky!
We'll keep you posted,
Jonathan
Sunday, April 2, 2006 9:48 PM CDT
NEW PICTURES ADDED!
Good Sunday evening! It's been about a month since our last update. Sam continues to do well. As you can see from the pictures, Sam took a train ride. This past week, Tami took Sam to see Thomas the Train. For those of you with kids, I'm very sure you know who Thomas is.
This past April 1st marked the one year anniversary since Sam had his surgery to remove the tumor. In some respects, it feels like every bit of a year has passed, and in other respects, it doesn't. Tami and I were sitting in our backyard with Sam the other day talking about how this time last year, we were zombies. Days and weeks would pass, yet we had no concept of what was going on around us other than what was going on at the hospital. To think that Sam was unconscious for a month last year means we are truly blessed to be sitting here with Sam! We are very thankful that God's Will includes Sam to be here with us!
We have been spending as much time outside as possible. We completely missed spring last year due to being at the hospital, and we are trying to enjoy as much of it as possible this year.
Sam's vocabulary continues to increase. He now is beginning to ask the "why" questions. More to come, I'm sure.
Sam continues to have his monthly oncology and nephrology visits. His medicines change here and there, but he keeps moving forward.
As you can see from the photo, Tami just keeps getting more beautiful all the time. I got the better end in this deal, huh?
Thank you all for your continuing prayers! What a miracle this past year has turned out to be! Please continue to pray for Sam's continued strengthening, his immune system to improve, and that he will be with us for a very long time!
We'll keep you posted,
Jonathan
Sunday, March 5, 2006 1:54 PM CST
NEW PICTURES ADDED!!!
Good Sunday afternoon! Boy, oh boy, it's been almost two months since our last update, and I am in big trouble. I apologize for not updating this webpage sooner.
As you can tell from the pictures, Sam is doing well. He's been a lot of fun, and we are so very thankful for that. Over the last few weeks, all the grandparents came in town for a visit. Grandma Selma and Grandpa Gappa one week and Grandma Rosemarie the next. Needless to say, Sam received a lot of attention (and he wants it that way!).
This past Monday, Sam received his CT scan as a follow-up to his cancer treatment. The radiology report noted that everything remains stable from his last scan, which means no change! Praise be to God!
At this point in time, it is still undetermined as to when Sam should receive a kidney transplant. Both Stanford and Children's Medical are consistent with the thought of giving Sam roughly another year from now to heal prior to another surgery. This gives his body and immune system more time to recover from the cancer, chemotherapy, and previous surgery. With a transplant, his body and immune system will be weakened; therefore, it's best to give him as much time to get stronger before knocking his immune system down once again. As Tami said, "I'm in no hurry to put him through another rough surgery". He continues his monthly nephrology appointments, and if things change, so will the timeline for transplant.
A couple of weeks ago, Sam had another haircut. He's come a long way from that little bald boy less than a year ago. As with everyone this time of year, the three of us seem to be passing colds or the sniffles to each other. Hopefully, we'll break the cycle soon.
Sam has come to very much enjoy tortillas and queso. His preference is the little brisket tacos Mommy makes for him when we go out to eat. We should have expected this when Tami was pregnant. Prior to being pregnant, Tami was not a huge fan of Mexican food. When she became pregnant, she began to crave it. Needless to say, I had no problem with that.
Thank you all for your continuing prayers! Sam continues to get stronger and stronger! Thank you for your prayers for Sam's friend, Lisette. She has no more cancer in her lungs and is growing hair as well! Please pray for Pam Mach's daughter-in-law and her grandchild, and pray for God's will to continue being done.
We'll keep you posted,
Jonathan
Friday, January 13, 2006 7:13 PM CST
NEW PICTURES ADDED!!!!!!!!
Good Friday evening! It's been a few weeks, and by the looks of this update, we have lots of information to pass along. We hope you had a great holiday season and are enjoying the new year!
We traveled to Oregon for Christmas to see Grandma Selma and Grandpa Gappa, as well as Uncle Philip and Aunt Mame. Sam had a great time with unwrapping gifts. In fact, the wrappings and packaging may have been more entertainment for Sam than the actual gifts!
From Oregon, we traveled to Palo Alto, California to visit the pediatric kidney transplant team at Stanford University. The team had spent some time reviewing Sam's file (or files for that manner), and we asked questions to gain a better understanding of their program. It is a very impressive program, and we definitely left Stanford knowing more than when we had arrived.
This past week, Sam had his monthly kidney follow-up appointment. We had a good conversation with Sam's nephrologist, and the following is where we are:
- To possibly increase the chances of Sam finding the best possible match, he can be placed on more than one regional kidney transplant waiting list. That is something we are strongly considering and leaning towards.
- At this point in time, it is still undetermined as to when Sam will be placed on the waiting list. Ideally, the doctor would like to see more growth from Sam which could possibly increase the chances of a successful transplant. My best guess is that this will be a month-to-month decision.
A living donor transplant has a greater success rate. At the current time, we do not have anyone who would be a possible match. One day last week, Tami showed me something she wrote. After reading it, all I could do was just cut and paste what she wrote into the following section. There is no way I could ever write something as profound and eloquent as she has in the following section (but that is one of the reasons I married her!). Please read the following from Tami:
As with many moments while you are pregnant you know God is shining down on you. Thinking back to those happy moments I try to remember why we decided to have both a crib and a queen size bed remain in Sam's small room, and the only thing I can think is that it must have been one of those Divine interventions. So many nights have been spared because of that comfortable place to sleep with Sam. Since our return from the hospital in May, the bed has become a queen size crib! As Sam cries out, mommy or daddy can just hop in with him, allowing us to quickly get back to sleep….Usually. This morning things are different, it is not Sam that keeps us awake but our own thoughts. Jon, in what is supposed to be "our bed" and me nestled with the sleeping baby, (whose diaper coincidentally sprung a leak all over me), both of us racking our brains, planning and considering what lies ahead.
Two days ago we were meeting with the Transplant Team at The Lucile Packard Children's Hospital at Stanford University. We learned a few new things that day and heard much of the same information we have heard from Sam's Care Team here in Dallas. But, what Cathy, the nurse, said that no other person has said out loud was "that really sucks!" What she was referring to is the fact that neither Jon nor I are compatible with Sam's blood type and cannot be considered for kidney donation. Out of all the struggles we have faced this one may prove to be the most frustrating. How can this be, Sam is my flesh and blood, but not the same blood? You can only imagine the despair! As parents, the only thing we can do is wait and pray that someone will come forward with willingness and the right blood type.
When appropriate, Sam will be listed on the transplant list as well. Statistically, this list has saved may lives. It is a long list, and we were told to hope for the best and know that the pediatric patients on the list do get priority. Well, this is definitely something to hope and pray for. But how strange is this, hope and pray that some other life may be lost so that the one you care most about can be spared. How do you go about asking for something like that? What a horrible thought. It's like asking your neighbor to sign their child up for the draft.
Cathy also explained how the process of matching unfolds. It is a six way match, and the key is that Sam's blood will properly mix with the potential donor's, matching on as many levels as possible. The other key factor is to hope that his predisposition for rejection is low. She explained that since Sam has had numerous blood transfusions he may already have many antibodies built up in his system, resulting in a very high predisposition to reject. This is not good news. So not only are we seeking a donor, but this person will need to meet a host of criteria to qualify. In fact, with the possibility of Sam’s blood being a difficult match, several potential donors may need to be identified. Wow, so how many other miracles can we keep asking God to bestow on us? Have we reached our limit?
So, here I go, ready or not gentle reader......if you have searched your soul for a great New Year’s resolution and have come up empty, I bet I can think of a way to help. If you were hoping to try something different in 2006, I bet this is something really different! Below I will list the criteria that may qualify you for this selfless challenge. The information will be given, and I can only shamefully hope that you will hear this cry for help to give it some strong consideration.
• You must have the blood type of either O or B
• You must be between the ages of 18-40 and in excellent health with no prior history of hypertension (High Blood Pressure) or Kidney Stones.
• You must not be pregnant or have been pregnant or nursing in the past six months of the time of transplant. Pregnancy after donation is possible, but is usually not recommended for six months after the surgery.
• You must realize that you would be out of commission for a minimum of three weeks and would be asked to have several Doctor visits and exams/tests prior to the surgery. The surgery (donor nephrectomy) has evolved over the last few years. It is generally now performed laparoscopically, which is several short incisions and a special camera instead of one large incision. This results in less pain post-op and a 2-3 day stay in the hospital. The recovery time is a minimum of three weeks.
• Please consider that all medical expenses associated with the transplant will be paid by either our insurance and/or Medicare.
• Please remember that you can live an absolutely normal life with one kidney and the doctors are extremely thorough when making the decision about a possible candidate and would not put your health in jeopardy if there is any question in their minds. (When the kidney is removed, the single normal kidney will increase in size to compensate for the loss of the donated kidney.)
• You must want to consider this for all the right reasons and if it at all possible please do not be offended because I asked.
Here are some stats taken from the Kidney Foundation Website:
•Over 89,000 U.S. patients are currently waiting for an organ transplant; nearly 4,000 new patients are added to the waiting list each month.
•Every day, 17 people die while waiting for a transplant of a vital organ, such as a heart, liver, kidney, pancreas, lung or bone marrow.
•Because of the lack of available donors in this country, 3,886 kidney patients, 1,811 liver patients, 457 heart patients and 483 lung patients died in 2004 while waiting for life-saving organ transplants.
•About 94.2 percent of the kidneys transplanted from cadavers (persons who died recently) are still functioning well at one year after surgery.
•The results are even better for kidneys transplanted from living donors. One year after surgery, 97.6 percent of these kidneys were still functioning well.
Total Kidney Transplants in 2004: 16,004
Total Number of People Waiting for a Kidney: 90,657 (as of 1/5/06)
For more information about kidney transplant and donation please refer to the following websites: www.kidney.org
and
http://www.kidney.org/transplantation/livingDonors/pdf/safe_to_donate.pdf (this is an article written by a Dr about donation)
There is a wealth of information that can be found with a simple Google search. Cathy, the transplant coordinator, is always there to answer questions and would be pre-qualifying each person with an extensive phone interview/conversation before any other steps are taken. Jon and I ask that anyone who is remotely considering this endeavor please contact us directly through our personal e-mail at gappa@sbcglobal.net or a phone call (and not through a posting on this website).
On a lighter note, we do hope your holidays were filled with laughter, love and many blessings. Sam enjoyed traveling and is still leery of Santa, even if he does bring toys.
Many Blessing to you and thank you for reading this very lengthy update,
Tami
Monday, December 19, 2005 8:40 PM CST
NEW PICTURES ADDED!!
Good Monday evening! We hope everything is well for you. Since our last update, Sam had his first haircut! As you can see by the pictures, he was not overly excited, nor was he overly concerned about this event. The haircut went well, except for the end when Denise tried to trim his sideburns with the electric trimmer. He wanted no part of this near his head!
On the medical front, Sam had his monthly follow-up visit with his nephrologist last week. There have been no changes to his blood counts, resulting in more of the same. Sam also had a follow-up appointment with his oncologists. From the cancer standpoint, everything continues to look great! Praise be to God! It is time for another CT scan to make sure everything looks good from the inside. This is to be scheduled sometime in February.
This past Monday, we attended a party at the Gilda's Club of North Texas. If you are unfamiliar with this group, it is a nonprofit organization started by the late Gilda Radner. It is setup to provide emotional and social support for anyone touched by cancer. You can learn more of this great organization at www.gildasclub.org. On this night, a Christmas party was being held at the house. Sam was able to have fun in the playroom, and Santa paid Sam a visit! Now, anyone who knows Sam knows that he ain't gonna let just any ol' stranger hold him, even Santa Claus. So, as long as Santa kept an adequate distance, Sam was fine with Santa.
We hope this holiday season brings you as many blessings as we have received. Thanks to all you have sent prayers our way! Thanks be to God for Sam's friend, Hayden, finishing his treatment. He is currently free from cancer! Praise be to God!
We'll keep you posted,
Jonathan
Tuesday, December 6, 2005 9:12 PM CST
NEW PICTURES ADDED!!!!
Good Tuesday evening. I apologize for taking so long to update the website. We have had a lot of fun the last few weeks with Thanksgiving and Sam turning two!
We got the chance to travel to Cleveland to see Tami's family for Thanksgiving. Many of Tami's family had not seen Sam since last Christmas, and it was exciting to have the family all together during this time. Sam got some time to re-acquaint himself with some of his cousins, and he was able to spend some time playing in snow! Although Sam had seen snow before, this was the first time he really understood the concept of snow! His Uncle Tom Medvin made him his first snowball!
Sam handled the flights to and from Cleveland well. He loves being able to turn the overhead light on and off....on and off.....on and off (I think you get how this goes).
Yesterday, was Sam's big second birthday! As you can see from the pictures, Sam loves to blow out candles. He had several practice runs on Sunday, in order to be properly prepared for his big day. Monday's party was held at a local flight museum, which had numerous airplanes and kid activities. Sam loves airplanes. If kids running around from one end of the museum to the other is any indication of a good time, then this party was a hit. I'm not sure how many kids were at the party, but they seemed to be multiplying during the party! Tami and her Aunt Terri did a great job getting everything ready for the party (I think I was in charge of staying out of the way).
On the medical front, nothing new to report at this time. There are doctor appointments scheduled for next week.
Thank you all for your continuing prayers! Sam is doing very well, and we are very blessed! Please continue to pray for: Sam's continued healing and for his friends Lisette, Hayden, and Sutton to continue to heal as well.
We'll keep you posted,
Jonathan
Wednesday, November 16, 2005 9:01 PM CST
NEW PICTURES POSTED!!!!!!
Good Wednesday evening. As you can see from the pictures, Sam visited a fire station and became a fireman for the day (he was living out daddy's dream). As you can see, Sam has been in good spirits and is quite interested in what's going on.
Overall, Sam has had a good week. His vocabulary is expanding exponentially. Every Tuesday, Sam attends a music class, and from what I gather, enjoys the time quite a bit. He acts like he feels good, and he looks good. Sam has had no doctor appointments this week (yeah!) and has been able to enjoy the nice weather outside.
Sam's next appointment with his neprhologist and oncologist is mid-December. We will continue our discussions about a kidney transplant and determine what the next steps are to be.
Tami continues to balance her roles of doctor, nurse, pharmacist, chef, mother extraordinaire, and wondrous wife.
That's about it for now, we'll keep you posted.
Jonathan
Monday, November 7, 2005 9:13 PM CST
Good Monday evening. It has been a while since our last update. Today, Sam had his first follow-up nephrology visit since having a series of tests a few weeks ago. Today, the majority of the conversation centered around Sam receiving a kidney transplant. It is not if, but when now. His blood counts have not improved, and his growth has ceased. However, the boy looks good and acts very much his age. It appears that the only way for Sam to ever come off dialysis is to have a transplant. Tami and I have been focused this way for several weeks now. A kidney transplant will significantly improve Sam's quality of life. A transplant is NOT a cure, but rather a treatment plan. For the rest of Sam's life, he will have medications and tests performed to ensure a new kidney will not be rejected by his body.
What is to happen now? At a minimum, Sam must be at least 12 months out from his last round of chemotherapy. That equates to a February 2006 timeframe. He will need to have his Oncologists clear him for a transplant, so it may take longer than that.
We have been performing some preliminary research on what it will take for Sam to receive a kidney. There are two kinds of transplants: living donors and cadaveric donors. Step one is a matching blood type. Unfortunately, Tami and I do not have compatible blood types to Sam.
During the Christmas season, we are planning a trip to visit a transplant facility at Stanford University. This is really just an information gathering session to compare and contrast different pediatric kidney transplant facilities. Children's Medical Center has an excellent facility; however, we believe the best course is to assess multiple facilities.
I was to load new pictures of Sam onto the website; however, the batteries in our camera are dead, so they will have to wait until the next update.
Sam was a shark for Halloween. Surprisingly, he wore his costume longer than any of us expected. He has become a master with his toy lawn mower. This has become daddy's dream to have him trained at such a young age to cut the grass, while daddy "supervises" with a beer in hand.
So, what is the near term plan? More of the same, in terms of dialysis and medications, and more information gathering on transplants.
Incidentally, there are 54,000 people on a kidney transplant list and 800 of them are children. There are not enough organ donors as compared to the number of people waiting for them.
Thank you for the wonderful cards and prayers sent to us! God is getting us through all of this and making Sam stronger for it! Thank you for your continued prayers for Sam's friend Lisette as she has finished her year-long chemo and radiation treatment!
We'll keep you posted,
Jonathan
Saturday, October 15, 2005 8:31 PM CDT
Good Saturday evening. I want to give everyone a quick update. This past Wednesday, Sam spent the day at the hospital to have a few tests performed. He received a sonogram of his kidneys to measure the size of each kidney. He also had a test performed called a glowfil test. A basic description of this test is when a limited amount of potassium and a certain isotope is injected into the body. The isotope is to make the brain think it is creatinine. These two items are to be removed, via the kidney, out of the blood and into urine.
Although we have not seen the formal report, nor have we had a formal follow-up with the doctor, we did get some information yesterday. The simplest way to say it is that nothing came back indicating his kidneys are going to come back.
The sonogram showed that both kidneys have shrunk since his last sonogram in June. Both are below normal size (the normal range is 5.5cm-8cm. His left kidney is 4.7cm and the right kidney is 3.6cm.). This is discouraging because his left kidney was 5.9cm in June.
The glowfil test also indicated that his kidneys are not processing and filtering at a minimal level. His blood results also showed that his BUN is 45 and his creatinine is 2.7. These are higher than previously (which means that his blood counts are worse than before, another sign that the kidneys just aren't working enough).
Of course, this is news we didn't want to get; however, it is not totally unexpected. It just changes the thought of Sam having a kidney transplant from being one of hoping to avoid to now a requirement and reality.
Where do we go from here? Well, we still need to have our nephrology visit in a couple of weeks to discuss all this. As I had mentioned in the last update, we had begun doing some preliminary research on pediatric kidney transplants. We will continue moving through this process, trying to understand what needs to happen, step by step.
In the meantime, daddy has learned that his language will clean up starting now. Sam is a parrot and has big ears.
Thank you all for your continuing prayers! Sam is gonna get through this, and God has big plans for him!
We'll keep you posted,
Jonathan
Sunday, October 9, 2005 8:15 PM CDT
NEW PICTURES POSTED!!!
Good Sunday evening. It's been a while since our last update. Overall, Sam is doing well. He continues his dialysis and handles it very well. He has had several doctor appointments over the last few weeks with his nephrologist, oncologist, endocrinologist, and pediatrician.
From an oncologist standpoint, he continues to do well. His bi-weekly tests still show no signs of cancer! Praise be to God! He had his quarterly endocrinology visit for his adrenal gland replacement therapy. Pretty much status quo here as well. Continue with the medication and the same doses. Sam went to a new pediatrician, due to his former doctor retiring. Needless to say, I think this pediatrician may need a new file cabinet for Sam's file! From a nephrology standpoint, the good news is that the doctor reduced his dialysis time from 12 hours back to 10 hours! This is great for us, because this gives us a little more free-time in the evenings. A 12 hour dialysis session was a challenge for us and for Sam. The doctor also reduced his dialysis concentration from 2.5% to 2.0%. What this basically means is that less fluid is needed to be removed from Sam during dialysis.
This week, Sam is to have a sonogram and a couple of other renal tests. We have been hoping to have a sonogram because we are very curious about the size of Sam's kidneys. As I have mentioned previously, Sam's right kidney is tiny. Reality is that it is highly likely his right kidney will never work. Now the question is what is the size of Sam's left kidney. If there is growth to it, then there is still hope his kidney will function. If this kidney has shrunk, then it is highly likely that it will never function as well. The renal tests to be performed will also determine renal flow of the kidneys. Needless to say, we are anxious to get some results.
Sam is officially a carnivore. His preference is pork tenderloin. The boy can put the meat away. Also, the Y chromosome must be kicking in. Sam's favorite things to do are play with his Hot Wheels and dig in the dirt. Put a mound of dirt in front of him, and he's set for a while!
Tami is as strong as ever. Although, I'm not sure she's crazy about him getting so much dirt under his fingernails.
We have begun some preliminary research into kidney transplants (and when I say "we", I really mean Tami. I just listen to everything she's researched). This doesn't mean we have given up hope on his kidney functioning rather, we are just trying to understand some of the steps of the process.
Sam appears to have grown a half-inch or so since our last update! Must be all that meat he's eating!
Sam's friend Sutton had a very complicated and amazing surgery this past week. At this point, it appears he is doing very well. Please continue to pray for this little boy. He needs our prayers!
Thank you for your continuing prayers! Please pray for: Sam's kidneys (especially that left one) to continue healing and growing; his blood counts to get better; and for Lizette, Hayden, and Sutton's health to improve!
We'll keep you posted,
Jonathan
Tuesday, September 20, 2005 8:08 PM CDT
Good Tuesday evening. Our last update was when we returned home from the hospital due to Sam's high blood pressure. For the past week, Sam's blood pressure is better, not perfect, but better. It's been in the 120/80 range (it should be 95/55). Tonight, his BP was 116/68.
On the cancer front, Sam had a follow-up CT scan last Friday. The scan came back clean! Thank you God! That was some needed good news!!!! The scan report also noted that the right kidney is tiny. Realistically, this means that the right kidney is probably too damaged to function. Tami and I suspected that for some time. The report could not make any definitive statements regarding the left kidney. Our hope is riding on this left kidney.
While Sam was sedated for the scan, we had a pediatric dentist examine his teeth. He's had so many medications, we wanted to make sure his teeth were ok. The dentist said they looked very good!
On the kidney front, Sam continues dialysis. On Thursday, he decided he was going to help mommy by disconnecting himself from dialysis (after it was finished thank God!). Well, this was not good, because he possibly touched the end of his catheter. As a result, we had to administer a couple of medications to his dialysate. This caused Sam to have some abdominal cramping over the weekend. We are through administering these meds, so Sam's pain has subsided.
On a daily basis, Sam is receiving 13 different medications. The boy is getting so accomodating that he will sometimes take the syringe himself, put it into his mouth, and give himself his own medicine! And I complain if I have to take aspirin! That's one tough kid!
Tomorrow, Sam is to receive an echocardiogram. As a result of this long period of hypertension, it's been recommended that Sam see a cardiologist to ensure his heart walls are not thickening. We all PRAY that this will come out ok.
On the lighter side of things, Sam's new words are "HOT WHEEEEEELLLLSSSSS", "PICK-----UP----DUTCH (i.e.,TRUCK)", and "BIIIIIIIGGGGG BUS!" You would never know anything is wrong with this kid by the way he looks and acts.
Thank you for your continued prayers! Thank you Jesus for a clean scan! Please continue to pray for: a good echocardiogram report; a GROWING left kidney; blood level improvement; and for Sutton's upcoming surgery to be successful!
We'll keep you posted,
Jonathan
Saturday, September 10, 2005 8:56 AM CDT
Good Saturday morning. The good news is that we are home! After Sam was admitted to the hospital Tuesday afternoon, the doctors tried a number of things to regulate Sam's blood pressure. What was finally concluded was that Sam's kidneys are probably excreting a hormone which causes the blood pressure to rise. This hormone should not be excreted by the kidney. This is another sign that the kidneys are not working.
Right now, Sam is on a total of 12 different medications. Three of them relate to his blood pressure. Now that the problem has been identified, we are hopeful that in the next couple of weeks, two of the three medications can be eliminated.
Sam's blood pressure is still not exactly where it needs to be. For a kid his size and age, his BP should be approximately 95/55. To give you some perspective, on Tuesday, it was approximately 190/120. Currently, it's about 120/85. Although we have been having to take his BP twice daily, we are having to really watch this for large fluctuations.
His blood counts overall were worse than before. As mentioned above, his kidneys are excreting a hormone that is an indicator of kidney failure. As the doctors have repeated mulitple times, the longer the kidneys go without working, the less likely they will ever come back. We are not giving up hope; however, the odds are growing daily that his kidneys will not come back.
A year ago yesterday was when Sam entered the hospital because no one could figure out what was wrong with him (i.e., why is his eyes so puffy, etc.). One year ago today was the first time the "cancer" word was thrown at us. I went back and scanned some of the entries over the last year. In some respects, the memories are still pretty fresh, in others, it seems that we have lived a few lifetimes over these past 12 months. Tami still looks gorgeous.....I look like "hammered sh*t". Tami gets all the credit for being the one who recognized something just wasn't right with Sam. Without her being the absolute best mom, God knows what could have happened.
Sam has amazed us all the past year and will continue to amaze us forever. My little pea-brain will never be able to understand why Sam has had to go through all of this, why any kid would go through this, why Sam keeps having all kinds of challenges/setbacks/hurdles, why he never has a "normal" day, but the only thing I can keep coming back to is that God's work is being done through Sam.
Thank you all for your prayers! Your prayers are keeping us strong and Sam strong! I've got to go.....Sam wants to build a fort out of the couch!
We'll keep you posted,
Jonathan
Wednesday, September 7, 2005 3:18 PM CDT
Good afternoon. We wanted to give everyone a quick update. Yesterday, Sam had his monthly Nephrologist visit. As we have mentioned previously, Sam's blood pressure has been very high (hypertension), resulting in Sam receiving two blood pressure medications daily. His blood pressure yesterday was extremely high (at stroke level). The doctor made the decision to admit Sam into the hospital to get control of his blood pressure. It was obvious, the medication he was receiving is not working. The doctors and nurses have commented that Sam looks great and acts great, and that there are not the usual symptoms of high blood pressure present.
Sam has been receiving different kinds of medication and had his dialysis changed to pull off more fluid. As of today, his blood pressure is lower; however, it is still too high. His pressure is being checked hourly, and we are waiting to hear from the doctor to see what the plan is for tonight and beyond. All we know right now is that we will be here for another day.
Hopefully, Sam's blood pressure can be corrected quickly and maintained at the proper level. He is handling all the poking, prodding, and late night activities better than daddy.
Please pray for the doctors to figure out quickly what the problem is and get in under control ASAP.
Thank you all for your prayers!
We'll keep you posted,
Jonathan
Tuesday, August 30, 2005 8:17 PM CDT
Good Tuesday evening! It's been a while since our last update.
NEW PICTURES HAVE BEEN ADDED!!!!
We actually took a vacation! After the last doctor's visit, since Sam's counts had improved somewhat, we asked the doctor if it would be ok to leave town. He encouraged us very much so. Since it is August in Dallas (need I say more), we jumped on a plane to Oregon to visit Grandma Selma and Grandpa Gappa! It had been well over a year since we had been able to visit them in Oregon. We packed up Sam's dialysis machine, tubing, bags, medications, etc. I believe we had taken half of the cargo space on the plane with all of Sam's equipment. You would have guessed that we were traveling for six months to another continent with all of the luggage we had!
During the flight to Oregon, Sam ran a fever. Boy, we're we nervous. During our layover in Phoenix, we called the doctor's office, and they advised us to continue on our trip and call them the next day to see if Sam's fever continued. After a lot of praying on the next flight, Sam's fever broke and by the next day, he began to rebound. Whew!
Since Sam's newest hobby is watering flowers, he was in utopia in Oregon. He watered as much as any boy probably ever has! He ran and ran and ran until all of us ran out of gas!
We returned home today, and Sam is in bed fast asleep. He has been eating well, sleeping well, and playing well.
Sam is to return to the doctor's office next week for another blood test. We are keeping prayers strong for more improved blood counts!
Thank you all for your continuing prayers! Please continue prayers for Hayden, Lisette, Sutton, and Sam's kidneys to continue to get stronger!
We'll keep you posted,
Jonathan
Wednesday, August 17, 2005 8:16 PM CDT
Good Wednesday evening!
To update everyone, Sam had his monthly nephrologist appointment this past Monday. He had blood drawn the previous Friday to have his counts assessed. Based on the doctor's review, Sam's counts have improved slightly! This is good news! Previous blood tests have had "mixed reviews". This time, it appears all the signficant counts related to kidney function improved somewhat.
Sam also has gained a little weight since the last visit. The doctor and nurses were very pleased with how well he looks! In fact, the doctor made the comment that he thought Sam looks better than his counts indicate! Fact is, he's just a good-lookin' kid (all attributed to his mommy).
Sam's cholesterol and blood pressure are still high. There are just too many factors that could be causing this; therefore, we can't just say specifically what the problem is. The doctor increase Sam's dosage of his medications related to these two issues.
We had a slight scare Saturday night. Sam was prescribed a new blood pressure medication over the weekend. We gave this to him in conjuction with some other medications he receives. This new blood pressure medicine, along with some others, cause drowsiness. As a result, Sam became very lethargic, to the point of not being able to hold himself up at all. After a quick call to the doctor's office, they recommended separating some of his meds. Note to all those who are prescribed multiple medications: Force your doctor to review all the medications they prescribe to ensure compatability! By Sunday morning, Sam was good as new.
We are now scheduled for another doctor's appointment in early September.
See, your prayers are working! Sam gained weight and had improved blood counts! THANK YOU THANK YOU! Please continue prayers for: continued improvement in Sam's blood counts (especially BUN, creatinine, cholesterol); that pesky blood pressure to come down; those kidneys to continue healing every day; and for Sam's friend Hayden who finished his last round of chemo last week and is having his scans this week!
We'll keep you posted,
Jonathan
Wednesday, August 10, 2005 8:24 PM CDT
Good Wednesday evening!
NEW PICTUES POSTED!
To update everyone, Sam has had a good week. He recovered from the stomach bug he had a week or so ago and is progressing well. His appetite is as strong as at any point in time since we've been home!
Sam's vocabulary continues to grow as well. New words this week are: moo, baa, and meow.
I believe I failed to mention in the last update that the doctors' have decided to have Sam take blood pressure medication and cholesterol medication. His blood pressure has remained very high. No one knows the exact cause, but one possible theory is that the dialysis drains so much fluid out of him that it causes him to become dehyrdrated. This dehydration leads to hypertension which causes a high blood pressure. As far as the cholesterol, his count a few weeks ago was over 300. Since being on this medication, it has dropped significantly. No one has a strong theory for his high cholesterol.
Overall, we are doing well. We are starting to get anxious for Monday's doctor's visit. This Friday, Sam is to have blood drawn for the tests to be evaluated on Monday. Additionally, the Oncologists want a urine sample to test for any possible cancer markers.
Thank you for your continued prayers! They have made Sam feel better! Please continue to pray for: healing kidneys, improved blood counts, and improved weight gain. Also pray for Sam's friend Lisette as she completes her last round of chemo.
We'll keep you posted,
Jonathan
Sunday, July 31, 2005 7:52 PM CDT
Good Sunday evening. It's been about two weeks since the last update. Overall, Sam is doing well. He continues to progress in the "terrible two's", and we thank God for that!
Earlier this week, Sam felt terrible for a couple of days. It appears he may have caught some type of stomach bug. He got sick and did not eat for a couple of days. This resulted in him losing a little weight. He has since rebounded nicely and appears to be gaining some of the weight back.
Sam's vocabulary continues to grow. Last week, he learned "not nice", and he says it in the most lovingly way. He is also trying very hard to say "thank you". I believe we have also decifered the word "car".
Tami is extraordinary, and you can see why God made her the mother of this child.
This week is to be a uneventful week (and we are praying very hard for this to be so). We are praying every day that on August 15th (Sam's doctor's visit), there will be some good news about his kidneys.
We continue to feel your prayers! Thank you all! We ask for continuing prayers for: Sam's blood counts to improve; continued weight gain; continued kidney healing and improvement; and for Lisette, Sutton, and Hayden to get well!
We'll keep you posted,
Jonathan
Sunday, July 17, 2005 1:38 PM CDT
Good Sunday afternoon!
I apologize for not updating this site for about two weeks. Overall, Sam is doing well. We are in our routine of medicines, doctor visits, pharmacy trips, and dialysis.
Sam is talking more and more. He has learned "please" (in the form of "pease!") and "I don't know".
Tami has become a nurse/doctor/pharmacist all in one. How she remembers all this stuff is beyond me.
We had a scare last Saturday. Sam ran a fever and was very lethargic. He also was not eating much. After talking to several doctors, we decided to take him to the ER. They ran numerous tests that revealed to our relief that he had some type of sore throat virus. Sam was discharged late Saturday night, and we went home to start dialysis.
Sam seems to be adjusting to his dialysis well. When it is time to connect his catheter to the machine, he holds the end of the tube for us!
Sam is to go back to the nephrologist on August 15th. Until then, we are enjoying each day with him!
I hope you are having a good summer. Please continue to pray for: Sam's kidneys to get stronger each day; his blood counts to get better; and for Hayden, Lisette, and Sutton to be rid of their illnesses!
We'll keep you posted,
Jonathan
Friday, July 1, 2005 8:57 PM CDT
Good Friday evening. Today marks three months to the day when Sam had his surgery. To update everyone, Sam had his monthly nephrologist visit today to review his blood counts. We received some good news and some not-so-good news.
The good news is that Sam does not need to have the feeding tube re-inserted! The doctor and dietician both agreed that although Sam needs to increase his nutrition, he appears to be holding his own and is very happy. Also on the good news front is that his potassium has continued to decrease into the normal range! This is great!
On the not-so-good news front, Sam's BUN and creatinine counts have gone the wrong way. A number of factors can cause this, such as Sam now eating on his own for the first time since the last week of March. His body is having to adjust to a multitude of foods that he has not had for months. This also indicates that his kidneys are still not functioning properly. The urine output is there, but the filtering is not.
At this point in time, it is still too early to determine if the kidneys are going to return to proper function. The doctor is prepping us for this being a long haul. He stated that the longer it takes, the less likely the kidneys will return. However, he stated he has seen kids take six months to a year on dialysis and then their kidneys returned to normal function.
Overall, we are very happy that Sam doesn't need the feeding tube. Thank you all for your continuing prayers! By not having the tube, it has made our days and nights much easier. As for the kidneys, we remain hopeful that in time, they will heal and work sufficiently for Sam to be taken off dialysis permanently. It appears that this will be a marathon and not a sprint.
Thank you all for your thoughts and prayers! Please pray for: Sam's BUN and creatinine to reverse their trend and improve; Sam's appetite to continue to get stronger; and for Sam's friend Lisette to get better so she can continue her treatment.
We'll keep you posted,
Jonathan
Sunday, June 26, 2005 7:26 PM CDT
Good Sunday evening!
NEW PICTURES POSTED!!
Sam has had a very good few days. From my last update, where due to me being a clutz I removed the feeding tube on Wednesday night, Sam appears to be eating quite well on his own! We don't really know for sure, but we are hopeful. The doctor's office requires us to write down every morsel Sam eats and report it all to them tomorrow for analysis. Hopefully, they will be satisfied with this, and Sam can remain tube-free!
Sam continues to progress well. He has been very happy, and it appears that he knows he's free from the feeding tube!
This week consists of sending the eating information to the clinic with a follow-up visit on Friday. From there, it is anyone's guess as to what could occur next.
Thank you for your prayers! God has really taken care of Sam, and we are so thankful!
We'll keep you posted,
Jonathan
Thursday, June 23, 2005 8:35 PM CDT
Good Thursday evening!
To update everyone, Sam had his blood drawn on Monday for routine testing. It was noted that his potassium level has improved; however, his BUN and creatinine levels went the wrong direction, not by much, but still the opposite way we were hoping for. The doctor is not too concerned at this point. We'll keep praying that they self-correct and head in the right direction!
Wednesday night, I did something stupid. Sam woke up with both the dialysis line and feeding line tangled. This is a common occurrence for him, as he rolls around in bed quite a bit. As he was crying, I untangeled him and went to pick him up. Unfortunately, his feeding line wrapped around my knee, and I accidentally yanked the tube right out of his nose! He cried for a little while, but fell back asleep.
Tami called the doctor's office and it was decided to let him stay off the feeding line until Monday! The doctor and dietician agreed to see if Sam could eat more on his own for a few days before deciding if he needs to go back on the forced feeds. Let's hope that daddy's dumb move proves to be a blessing!
Overall, Sam continues to get stronger. He also seems to be very happy throughout most of the day. He's back to doing what most kids his age do right now.....fall down and bump into things quite a bit!
Thank you for your continuing prayers! Please pray for: Sam's appetite to grow stronger day over day (and not to have that feeding tube re-inserted!); that his blood counts to continue to improve; that his kidneys continue to heal and get stronger; and that Sam's friend Sutton makes a full recovery from his surgery!
We'll keep you posted,
Jonathan
Sunday, June 19, 2005 6:14 PM CDT
Happy Father's Day to all!
Well, I got what I wanted: I got to spend the entire day with Sam (not in a hospital!) and the best mom Sam could ever have.
Sam has had a good few days. He appears to be eating a little more. This morning, he had an egg.
At church today, Sam was on fire. He wanted to walk all over the place and had something to say to everyone.
Sam is to go the doctor's office tomorrow to have blood drawn for testing. We are praying very hard that his counts have continued to improve.
Sam continues to get stronger as well. Previously, he has struggled to stand himself up (due to numerous surgeries to his abdomen). Over the last few days, he is working really hard to stand himself up!
We hope all of you are enjoying today as much as we are. Thank you for your continued prayers!
Take care,
Jonathan
Wednesday, June 15, 2005 9:04 PM CDT
Good Wednesday evening. I apologize for not updating sooner. Our nighttime rituals are so lengthy that it has been a real challenge to update this page during the week.
It's official, no tumor is present in Sam!
That statement is going to take some time to really sink in. At this point, no treatment plan is scheduled, other than periodic follow-up scans.
Sam went back to the kidney doctor this past Monday. Overall, his blood counts have improved; however, not enough to give the doctor sufficient comfort in testing Sam's kidneys on their own. His plan is for Sam to continue with dialysis for another 30 days, then re-assess Sam's blood counts. (I think you can guess what we would like prayers for!)
It appears Sam has entered the "terrible twos". I think we can all say, "Thank God!" Yes, this stage is a challenge all itself, but we are just glad he made it to this stage!
Those prayers are making this miracle continue to happen! Thank you!
We'll keep you posted,
Jonathan
Sunday, June 12, 2005 7:02 PM CDT
Good Sunday evening. NEW PICTURES ADDED!!!!
To update everyone, I'll break things down between cancer update and kidney failure update.
Cancer: Sam had his follow-up CT scan Friday afternoon. While waiting for the scan to occur, Sam made his "rounds" visiting the PICU where he spent the month of April. Two of the many nurses that took care of him saw him for the first time as an "awake" child. They were so thrilled to see him!
The scan went well and relatively quick. We have yet to get the official reading of the scan; however, one of Sam's oncologists called us Sunday afternoon to let us know that he took a look at the scans. He stated that he saw no tumor visible anywhere! Thank you Jesus Christ! Thank you all! Now, this is not official, and there is still a lot of other information that we don't have, but this takes a great weight off of Sam and us. We should know more sometime on Monday.
Kidney failure: Sam has an appointment with his nephrologist Monday afternoon. At this time, the doctor will be assessing the blood tests that were drawn Friday to determine if improvement is/may be occuring in Sam's kidneys. Tami and I are armed with lots of questions either way.
Sam has made very good strides over the last week. He is definitely getting stronger (he is walking quite a bit), and he even is eating a little bit of food! Today, he ate some turkey and cheerios. Granted, this is not enough to sustain him, but it is the first time he has eaten for multiple days in a row!
Your prayer power is amazing! Look how Sam has progressed! We thank you all! Please continue to pray for: Sam's blood counts to improve (creatinine, potassium, albumin, BUN); his kidneys to continue healing and working; his appetite to improve; and for those kids in need of care, but are not near a facility that can help them, to find the means to get to one immediately.
We'll keep you posted,
Jonathan
Sunday, June 5, 2005 12:55 AM CDT
Good Sunday afternoon!
Today, Sam is 18 months old! For half his life now, he has lived/survived with the following:
- diagnosis of neuroblastoma, located on his kidneys, roughly the size of a grapefruit;
- eight rounds of chemotherapy;
- a nine hour surgery to remove the remaining tumor;
- kidney failure;
- paralysis;
- sedation for a month;
- ventilator for a month;
- dialysis;
- multiple other surgeries for catheters, mediports, etc.;
- a feeding tube
- more shots than I thought humanly possible; and
- more medicines than a pharmacy.
And somehow, through all of this, this boy continues to amaze us all.
I cannot even to begin to fathom what it must have felt like for him over the last nine months, in terms of pain, fear, and uneasiness. However, everyday, he still somehow manages to smile.
Over the past week, Sam has had some ups and downs. We know he is gaining strength because he continues to take more and more steps on his own! The downs have been that he has gotten sick a few days, and has had no appetite. The trouble is that with all the medications he is receiving it is nearly impossible to determine if any one thing is causing his sickness or everything is causing him to get sick (every medication has a listed side effect of nausea!).
Sam is being scheduled this week for a follow-up CT scan for his tumor removal. We are praying that the CT scan will confirm that NOTHING is present!
Sam's blood counts remain relatively stable. We've asked the nephrologist what specific indications is he looking for in order to remove Sam off dialysis (giving his kidneys a "test"). Two things that I can understand: Sam's creatinine must be at 1.0 or less (currently it is 1.6), and his potassium must be within range. Sam is scheduled to return to the nephrologist on June 13th for his one month visit.
Thank you for your continuing help to us with your prayers! God is getting us through this time! We ask prayers for: Sam's counts to continue to improve, especially the creatinine and potassium; that the doctors and nurses continue to make the correct decisions in helping Sam's body to recover; that Tami and I continue to "hang in there"; and that all those children in the hospital will have the same support as we do!
We'll keep you posted,
Jonathan
Saturday, May 28, 2005 7:30 PM CDT
Good Saturday evening. To update everyone, over the past week, Sam continues to get a little stronger. He has crawled a little more and will walk several steps as long as he holds mommy's or daddy's fingers! Thank you for your prayers!
Sam's appetite is still almost non-existent. Tami has kept Sam's doctors informed of this. They seem to think that it is somewhat expected for him to not want to each much. This appears to be primarily due to all the different medicines he is receiving. We could open up our own pharmacy with all the drugs we have in this house! Over the past week, Sam began to cut his molar teeth. This could also possibly be a reason why his appetite is weak. As you can see, Sam has so much going on, it's virtually impossible to determine any specific reason for not wanting to eat.
Today, he seemed to be a very happy boy! Those smiles keep us going when we are constantly preparing meds, feedings, and dialysis.
We hope everyone enjoys this holiday weekend. We are so very thankful that we are able to spend it at home. We continue to ask prayers for: those children not able to come home from the hospital; the doctors and nurses to continue making the correct decisions for Sam's care; and for those kidneys to make a complete and speedy recovery!
We'll keep you posted,
Jonathan
Saturday, May 21, 2005 9:27 PM CDT
Good Saturday evening!
I apologize for not updating the webpage sooner; however, it has been a very busy week, and I have not coordinated a time to get these updates done on a timely basis. Hopefully, I will improve on this over the next week.
I've posted new pictures of Sam on the page. These pictures were taken approximately one week after Sam "woke up" from his sedation. I'm amazed he has the ability to smile! You'll notice that Sam's appearance is different. After the toll his body has been through, it will take some time for him to look as he used to. You'll notice there is not only hair on his head, but all over his face!!!! I had planned on teaching Sam how to shave, but not at 17 months!!!!!! This is a result of Sam receiving substantial doses of steroids over several weeks. A side effect of these steroids is that it produces hair all over....maybe Sam's Grandpa Gappa should rub some of these steroids on his head. These steroids have helped him in his healing. Another side effect of these steroids also caused his hair to darken as well. Over the next few months, our "wolf-boy" will lose the hair on his face and his hair color will return to its original color.
Sam has had a good week being at home. Tami and I have enjoyed being home as well. At times, it seems very hard to believe that we are actually home. I forget sometimes and automatically think we need to be returning to the hospital for something!
We have spent the past week getting ourselves organized with medications, feedings, and dialysis. Each day seems to be getting a little easier.
Looking over the past 6 days, Sam has continued to improve. His blood counts are good, and he continues to be happier than the previous day. Today, he actually crawled a few steps! That is big progress!
He still is not eating much, but is gradually eating more. We have to be very patient that this will improve in time. What is somewhat ironic is that some of his medications result in a loss of appetite.
Thank you for your continued thoughts and prayers! Sam is doing so much better being home! Please continue to pray for those kids not able to go home from the hospital yet.
We'll keep you posted,
Jonathan
Sunday, May 15, 2005 6:28 PM CDT
Good Sunday evening!
We have big news:
SAM CAME HOME TODAY!!!!
As best I can, here is the recap of the last few days:
As mentioned previously, Sam's blood counts have been very inconsistent. Several tests to date have been performed to determine what is the cause of this. So far, nothing out of the ordinary has been noted. The conclusions thus far is that his body has been through the wringer the last 9 months; therefore, his blood should not be expected to be perfect at this point. I guess we all could have guessed this. There are additional tests that are being performed by the Hemocology group, which hopefully will rule out any further spreading of cancer.
In conjunction with this, Tami and I have been trained on most everything the staff is doing to take care of Sam currently.....ok, Tami at least has been trained.....my job is to type these updates. At this point, the doctors believe Sam would be better off at home. More importantly, Tami and I believe Sam would be better off at home healing. Sam will be more apt to being stimulated at home rather than the hospital in order to get stronger and eat more.
We came home at 5pm today. Needless to say, it is a great feeling. Sam's eyes perked up on the ride home, and he seemed much happier the minute we walked in the door!
Now, comes the work: we are setting up his dialysis machine, medications, and feeding pump. Sam still has a feeding tube in his nose, which he is receiving nutrients. Approximately every 2-3 hours, Sam is either receiving medication, feedings, or dialysis. We are ok with this. We truly believe he will get stronger and HIS KIDNEYS WILL BEGIN TO WORK!!!!!!!!
Here is a quick recap of Sam's events:
44 days in the hospital;
28 days of ventilator;
28 days on a sedation;
14 IVs;
2 different hospitals;
and a partridge in a pear tree.
Actually, there is more than this, in terms of the numerous doctors and nurses involved in Sam's care. Most importantly, thank you all for the numerous prayers sent our way! YOUR prayers, and GOD'S WORK got Sam out of the hospital!!
There is much more to communicate, unfortunately, there is much work to be done right now in organizing Sam's care at the house. We'll try to give more information in the next few days.
Thank you!
Jonathan
Wednesday, May 11, 2005 6:35 PM CDT
Good Wednesday evening. Over the last couple of days, Sam continues to make progress in gaining his strength back. He is showing signs of moving his legs and feet more, his hand coordination is improving, and he is better at holding his head up for stretches of time.
His blood counts continue to be inconsistent. Today, more blood was drawn to determine why his red and white blood cell counts are low. It seems for the last several days that either his sodium, creatinine, WBC, or RBC are not in the normal range. I wish there was a clear cut answer for all this, but there isn't. Hopefully, we will receive some news by tomorrow. He also had X-rays performed on his abdomen to determine why, if anything, does he continue to have severe abdominal pain during the drain cycles of his dialysis. The leading theory at this time is that Sam has substantial adhesions in his abdomen from all the surgeries in this area, causing pain with the fluid being pulled out of his belly. We are hopeful that in time, this pain will go away.
Sam's appetite is still very weak. This appears to be a result of numerous issues, some of them are: the long, complicated surgery and recovery he has had; kidney failure can make you feel like not eating; and the steriods he continues to take can make you feel like not wanting to eat.
Tami and I continue our dialysis training, in the event Sam must continue with this once he is allowed to go home (keep in mind that we are staying positive that he WON'T have to have this!!!). Tami is quickly becoming the dialysis professional, while I continue to make a mess with the fluids. This process calls for precision and accuracy with fluids, syringes, etc. I'm not know to be very precise or tidy. Today, I sprayed fluid all over the place that made the room stink like cat urine! I think it's safe to assume the hospital will not want my job application!
Tami continues to be the mother extraordinaire. Sam is comfortably spread over her lap, taking a nice, long nap.
Looking over the last week that Sam has been here, you can notice the marked improvement in his health. He is much more alert and getting stronger. We are seeing more and more signs of the "old" Sam reappearing! He still has a very long road ahead of him, but he has come very far.
Your continued positive words of encouragement help us each day! Thank you! We continue to pray for: no infections to come over Sam; the doctors and nurses to continue making the correct decisions in Sam's recovery; Sam's kidneys to return to their normal functional ability (we've told Sam that it is ok if he wants to pee all over the bed!); and for all these children here and everywhere to receive the best treatment possible!
We'll keep you posted,
Jonathan
Monday, May 9, 2005 5:30 PM CDT
Good Monday evening. I apologize for being tardy with an update. We are still settling in at Children's Medical Center, and I have not gotten myself setup to provide timely updates.
Sam has continued to progress since entering the renal unit last week. He struggled a bit Friday and Saturday with nausea and diarrhea, but Sunday he was considerably better.
He has begun to hold up his head and move a bit more! There are times throughout the day that he is not attached to any IVs, allowing us to hold him and walk the hospital floors a while! That is a very good feeling!
With all that he has been through, Sam maintains a wary look on his face anytime someone he is unfamiliar with enters the room. This is very understandable. If I had gone through what he has been through.....I think the doctors and nurses would dread coming into my room!
This week, we are focused on him gaining more strength and being able to eat and drink on his own, versus a feeding tube. This morning, he was drinking quite a bit of water, which is a very good sign.
Sam continues to produce wet diapers, which is very good. It appears his kidneys' ability to filter has yet to begin. We continue to pray that this will start very, very soon! The dialysis has been modified to run for about nine hours. Sam's abdomen gets very irritated a couple of times through the night, but the rest of the time, he appears to be handling it pretty well.
Tami and I continue our dialysis training, in the event we have to administer dialysis when Sam goes home. We hope and PRAY that we won't need this training! Maybe the hospital will want to hire Tami to become a dialysis specialist when this is all said and done!
Continued thanks for all your strength, prayers, and positive encouragement. Sam has made remarkable progress, and we are so very thankful that we can hold our boy!
Please continue to pray for: the doctors and nurses to make the correct decisions in healing Sam; that these kids in the renal unit will get to go home free of dialysis; that Sam will eat and drink more; and that Sam's kidneys function properly!
We'll keep you posted,
Jonathan
Tuesday, May 3, 2005 7:51 PM CDT
Good Tuesday evening! It has been a busy couple of days. I know I will not cover everything in its entirety, but I'll give you the overview.
First of all, Sam continues to progress well. He has improved to the point that he has left the ICU! Very quickly, he has now left Medical City and has been admitted to Children's Medical Center in Dallas (I've updated the home page to reflect this hospital information.
The ICU doctors determined that Sam is stable enough that he did not belong in the ICU anymore. After a number of conversations with several doctors, it was determined that Sam's care at this point needed to focus on his renal failure and physical therapy. Unfortunately, Medical City does not have a dedicated pediatric renal unit; therefore, it was decided that Sam's next phase of treatment should occur at Children's, which has a unit solely dedicated to pediatric renal issues.
At a later time, I will go into more detail about the incredible care given to Sam by his Medical City oncology team (Drs. Goldman, Weinthal, and Lenarsky) and nurses (to only name a few at this time: Debbie, Kammie, Robin, Belinda, Kanlaya, (I will name more later)), as well as the ICU unit (Drs. Papo, Sandell, Laham, Matson, Rhee, Nandu; nurses: Angela, Ken, Catherine, Connie, Carla, Stacey, Diana, Jenny, Ken, Shawn Perky). As Sam was preparing to leave today, a number of these folks came down to say goodbye. They took personal interest in Sam and each one of them did amazing things to save this boy!!!
Sam was escorted to Children's in his own ambulance. Mommy went for a ride as well. I wish I had been there to turn the siren on and honk the horn!
We actually have our own room now! That means Sam is doing very well! It even has a bathroom! We were so use to the ICU that I'm not sure we know how to handle this much room!
The team of nephrologists and nurses have begun assessing Sam's condition and are starting their treatment plan immediately. Physical therapy for Sam begins tomorrow. Starting tomorrow morning, Tami and I begin our training on how to use the dialysis machine for home use. They must have designed the machine for me.....it only has three buttons....one is for "on" and another is for "off"...it's that third button I'm worried about.
Thank you for your continued prayers! They have led the doctors to the right decisions in continuing Sam's treatment plan. Sam has completed one phase and is now ready to move to the next phase.
Remember pee is what we need.
We'll keep you posted,
Jonathan
Saturday, April 30, 2005 3:04 PM CDT
Good Saturday afternoon! Yesterday marked four weeks since Sam entered the hospital.
To update everyone, Sam continues to progress well. He seems to be more alert and moving his arms more. Physical therapy has begun. He has been on a limited diet of formula, but now he can begin taking skim milk, and certain types of baby cereal.
This morning, I heard him giggle! He is smiling more, and more of the old Sam is start to re-emerge!
He is still very weak and frail. This will take several weeks of "beefing him up" as well as therapy.
He appears to becoming increasingly comfortable with us. The doctors had told us with what he has gone through, he probably has been incredible sore, very confused, upset at us, and very scared. The smiles make this better for us.
As far as the kidneys go, he continues to produce a wet diaper a few times a day. The cc count varies from 30 to 90cc per diaper. The dialysis that he receives removes a very large amount of fluid from him. Today, the doctors are ordering a less concentrated solution for dialysis. This may allow his kidneys to produce more urine. Remember, it's not only the volume that is important, but also the quality of what comes out. This has been an issue to this point.
Overall, this week has been full of positives. We are so very thankful to see him begin interacting with us; to be able to hold him; and to see some of his personality return! Thank you all!
Please pray for: Sam's doctors and nurses to continue making the correct decisions in Sam's healing; the children in this ICU to receive the same support and prayers as we are; and for Sam to PEEEEEEEEE!
We'll keep you posted,
Jonathan
Wednesday, April 27, 2005 8:38 PM CDT
Good Wednesday evening!
Sam continues to progress! After 25 days on the ventilator, at approximately 3:45pm Tuesday, the ventilator tube was removed from Sam! Praise be to God! He did very well and is breathing strongly on his own! The feeding tube through his nose has also been removed!
Later that night, Tami was allowed to give Sam a little water and he could not get enough. He progressed through the night and by the middle of the night, he was allowed to have a baby bottle of formula! His sore, dry throat was very weak and scratchy, but the liquid was very soothing to him.
Sam is very weak, sore, iritable, and does not look much like himself. This is very understandable and expected. He looks a heck of a lot better than I do right now!
At 5pm today, I walked into his room and saw Tami holding Sam!! What a great sight! Throughout the day, he continued to gain more strength, moving his left arm then his right arm. He still is unable to move his head or body, but in time with physical therapy, this will return.
His dialysis continues, and his pee continues! He had another wet diaper this morning, and the nurses catheterized him this evening and he had more pee! He still has a long road to go, but every little bit counts.
We are definitely having more forward movement than at any point in the last 3 1/2 weeks. It is all a result of your prayers and God's work!
Thank you all!
Jonathan
Monday, April 25, 2005 8:53 PM CDT
Good Monday evening. To update everyone, Sam continues to progress very well. We had an exciting day Sunday: Sam produced a total of 230cc of urine! That was a huge leap! This is about 40% of what he needs to produce in a 24 hour period, but he continues to improve! Today, he has produced approximately 50cc. We'll just have to wait and see how he progresses. Thank you for your prayers!
More tubes were removed today. He is now down to the original port in his chest that has been used for chemotherapy.
He has been more alert today! His eyes are able to fixate on us and does not look as "glazed over" as he has the last couple of days.
His face is still swollen and has a look that the nurses call "steriod face". Basically, he has had several doses of steriods which have darkened his hair, swelled his face and eyes. This has caused him to really not look much like himself. In time, this will pass and he will return to his normal look.
Tomorrow is tentatively scheduled to be the day that his ventilator tube is removed. All tests performed on him to ensure his breathing ability is strong enough have been successful.
He is still going through withdrawl from his medications. Sam is handling this pretty well, but has had moments of shaking, vomitting, and irritation.
Thank you all for your continuing prayers! Please pray: that his ventilator tube is removed on Tuesday; that he continues to gain his strength back; and that his kidneys continue to get stronger everyday!
We'll keep you posted,
Jonathan
Saturday, April 23, 2005 10:05 AM CDT
Good Saturday morning!
Sorry for a couple of days without an update. Here is a brief overview of the last couple of days:
Thursday: With the abdomenal catheter in place, the decision was made to continue with the CVVH dialysis (original dialysis) for 24-48 hours before switching to the peritoneal dialysis (PD). Early Thursday morning saw that the CVVH was beginning its predicted shutdown. The CVVH had run almost three weeks, which from what I understand, is a very long time. This catheter was beginning to clot from so much use. The doctors, nurses, and us were tip-toeing around the pump to give the abdomenal catheter more time to heal. At 1pm, the decision was made to run both types parallel to ensure the PD would in fact work. The hope was to run parallel for approximately 16 hours to adequately test the PD catheter. At 5pm the CVVH shut down for good. With this, the doctors decided that the PD would just have to continue testing.
Friday: By morning, the PD had been running 16 hours and had performed well! Thanks to the doctors (and your prayers!) for going forward with starting PD on Thursday instead of waiting until Friday! Without that four hour parallel test, I don't want to think about what would have happened!
Mid-morning Friday, the doctors decided to start taking Sam off ALL medication ASAP! Wow, what a sight it was to see the "Tree" of IV pumps dwindle from 14 to 4!!!!
Around noontime, Tami caught the first glimpse of Sam's eyes opening!!!! Throughout the day, Sam's eyes would open. He would also shed some tears, which is not the easiest on us. Now, Sam is VERY doped-up still. It will take several days for the medication to leave his body. He is still on the ventilator, and will be for a few more days; however, Sam has started going through withdrawl. The doctors and nurses are controlling this process to the best of their abilities by giving him very small doses of pain medication and sedatives. They have also introduced methadone to transition him off the medications. As the doctor told us, they have controlled Sam up to this point, now Sam is controlling the situation. He will tell us what we need to do to ensure his heart rate, blood pressure, etc. stay within a reasonable range.
Saturday morning: Sam had a somewhat rough night of vomitting and diarrhea. This is some typical side effects of withdrawl. Now, for some great news: Sam produced 77cc of urine this morning!! Praise be to God!! This is still very far from what he needs to produce, but this is his new personal record! Thank you for your prayers!
It is so amazing to see how big Sam's room has gotten now that so many machines and so many IV pumps have left!
Thank you, thank you, thank you! YOUR prayers have made this happen! Please pray for these babies around us to get well soon!
We'll keep you posted,
Jonathan
Wednesday, April 20, 2005 9:42 PM CDT
Good Wednesday evening. It's been a very long day, and I apologize for not updating everyone sooner.
Sam entered surgery approximately 10:30am. The procedure lasted about an hour and a half, and it appears that it was successful! The catheter is in place, and at this point, appears to be ready to use. The doctors want to wait 24-48 hours before using the new catheter to let some healing occur, minimizing the risk of leakage. THANK YOU ALL VERY MUCH!!!
We met with the Nephrologist (aka kidney doctor) this afternoon. He was very glad to see the catheter and is very much wanting to get Sam off the ventilator and other IVs. As he stated, Sam is in a very complicated position right now. Sam is very high risk for infections, with the amount of time he has been on a ventilator, sedated, medicated, etc. Now is the time to move to the next phase.
When we quizzed him about kidney function returning to a normal level, it was apparent his optimism was not as strong as his previous visit. We basically asked him the chances of kidney function. He stated he thinks Sam has a one in three or one in four chance of his kidneys returning at this point. He did state he really does not know what to expect because Sam needs to get up and moving around. He also stated it is very hard to determine what long-term effects all the chemotherapy has had on his kidneys. He did state that it is possible the more time removed from chemo may allow Sam to heal, allowing his kidneys to return. He was being frank with us on the fact that Sam may/will be on dialysis for a long period of time, and transplant may have to be a course of action long down the road.
With all this said, we are focusing on what needs to happen right now. We are focused on Sam starting this new dialysis, getting off the ventilator, and waking up! It's time to see Sam and Sam to see us!!!!
We are also focused on Sam being THE ONE in three or four whose kidneys return to normal function!
Thank you all! Please pray for the doctors and nurses to make the correct decisions in starting this new dialysis; that infection does NOT come over Sam; that HIS kidneys get going!
We'll keep you posted,
Jonathan
Tuesday, April 19, 2005 5:28 PM CDT
While waiting for tomorrow to come (Sam's surgery is at 10am Wednesday), I have an interesting story.
If you were unaware, we are Roman Catholic. Today, our parish pastor and parish deacon came by the hospital to administer the sacrament of confirmation upon Sam. As part of this, the person receiving the sacrament selects a saint to be named after. Obviously, Sam is unable to select a saint, so Tami and I selected a saint for him. We selected Saint Benedict.
Benedict means blessed. Saint Benedict lived from 480-547.
Saint Benedict is the patron saint of kidney disease.
As you probably know by now, the Cardinals of the Catholic Church have been meeting to vote on who will be the next Pope. Today, a new pope was elected. As a newly elected Pope, he selects a new name to be called as Pope.
He selected the name Benedict.
Monday, April 18, 2005 8:50 PM CDT
Good Monday evening. To update everyone, Sam continues on the same dialysis that began early Saturday morning. Over the last four days, Sam has produced 10, 11, 15, 22cc of urine! Thank you for your prayers!
Here is where things are getting complicated: Sam is making progress; however, his kidney filtering capabilities have not been sufficient. This type of dialysis requires Sam to remain sedated, with many medications, and on a ventilator. Sam currently does not have an infection; however, he is at high risk for one as a result of all the tubes he has and being on a ventilator. With each passing day, his risk increases further. The decision was made today to perform another surgery to implant a catheder in his abdomen to allow another form of dialysis to occur in this location. This is scheduled for Wednesday at 10am.
To further complicate matters more, because of his previous abdominal surgeries, this procedure may be a little more difficult due to scar tissue. Additionally, this type of dialysis may not work at all because of the previous trauma to his abdomen. The upside is that this will allow Sam to be removed from the ventilator and sedation, as well as begin the process of eliminating all the other medication.
This other form of dialysis will also allow Sam to continue his kidney healing process. Although we are praying for a miracle that his kidneys will begin functioning at a sufficient level immediately, we must prepare ourselves for a long recovery road ahead of Sam.
Thank you all! We feel your prayers! Please continue to pray for: the doctors and nurses to make the correct decisions in Sam's healing process; those kidneys to get going; the surgery to be quick and successful; for all infections to stay away from Sam!
Thank you!
Jonathan
Saturday, April 16, 2005 4:50 PM CDT
It's Saturday afternoon, and I wanted to let you know the latest. At 1am last night, Sam's dialysis pump shutdown, due to an air leak. This is not an unusual occurrence. At this point, they decided to keep Sam off to determine if he could handle being off dialysis. At about 6:30am, Sam's potassium level increased signficantly, resulting in dialysis beginning again.
The nurses cathederized Sam and he did produce 12cc of urine. The last three days, he has produced 10, 11, and 12cc. This is slow, steady progress, and we are very thankful that he continues to increase his urine output. Thank you for your prayers!
Tami and I posed several questions with the doctors today. Our current understanding is that another week of this type of dialysis may provide enough relief for Sam's kidneys to heal properly. If not enough progress is made, then another form of dialysis may begin which would enable Sam to be removed from the ventilator.
I think the key things to focus on are: his urine output for the last week has increased; the ups and downs of his vitals have reduced signficantly; he has remained off the nitrous oxide (this is different from the ventilator); infections have diminished; and his other functions appear to be working properly. These are very good things!
Your prayers have been incredible and we feel them! Thank you all! Please pray for the doctors and nurses to make the correct decisions; patience for all of us; and PEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!
We'll keep you posted,
Jonathan
Friday, April 15, 2005 7:54 PM CDT
Good Friday evening. To update everyone, Sam has had relatively stable days the last couple of days. He was off dialysis for six hours Wednesday. His potassium levels increased, so he had to begin dialysis again sooner than we had hoped. Thursday morning, he produced 10cc of urine and on Friday, he produced 11cc of urine!
Sam is to be taken off dialysis again sometime on Saturday. He will again be given some amount of time to see if he can urinate a sufficient quantity as well as produce the proper quality of urine. Up to this date, he has not produced enough of either for him to be removed permanently from dialysis. I'll get straight to the point: We could really use all the praying power possible for Sam to produce the quantity and quality necessary on Saturday in order for the doctors to believe he does not need to continue with dialysis.
Thank you all for getting us to this point! We'll let you know what happens.
Jonathan
Tuesday, April 12, 2005 8:05 PM CDT
Good Tuesday evening. To update everyone, Monday and Tuesday have been relatively calm days for Sam, which is progress! His heart rate and blood pressure have avoided the extremes of the past week and his urinary tract infection is nearly gone.
Tomorrow, we should find out if the other infection that is being tested for is truly an infection or not. Let's keep our fingers crossed. His lungs still have some partial collapse or hematoma. This will just take time to heal. The doctors are reviewing this daily.
Sam's dialysis continues to run well and should do so for another day or two. Yesterday, he produced approximately 4cc of what looked like something closer to real urine, and today he produced 8cc! Again, that is no where near the minimum amount of urine he needs to produce, but it is definitely going in the right direction! Thank you for your prayers!!
Tami is the pillar of strength as usual. The doctors and nurses have been urging us to pace ourselves because we have weeks ahead of us. I made an "appearance" at work yesterday and did nothing......then again, because of all the great people I work with, I don't do anything anyway, so it was nothing out of the ordinary in terms of my productivity!
Sam has received blood today to keep his heart rate and blood pressure in an acceptable range. The blood has really helped his coloring.
You can see how your prayers are helping Sam make progress! Thank you all! Please pray for these children who have been in the PICU much longer than Sam. They need our prayers.
We'll keep you posted,
Jonathan
Sunday, April 10, 2005 7:58 PM CDT
Good Sunday evening. Overall, Sam has had some ups and downs over the last couple of days; however, he still appears to be progressing in baby steps.
He has had periods of rapid heart rate and declining blood pressure. When this happens, this causes my blood pressure to rise significantly. A myriad of issues are the causes for these; however, the doctors and nurses are always quick to rectify the problems.
Sunday morning, the infectious disease doctor told us that a blood culture showed possible signs of another infection. Another antibotic has been started to fight this possible infection. The doctor is hopeful that it really is not an infection, but a line that could be contaminated. Please pray that this is true!
We received some encouraging news late Sunday: Based on Saturday's sonogram of his kidney's, Sam's kidney specialist is very encouraged that there is blood flow to and from both kidneys!!! Now, the flow is still not where it needs to be, but it appears that it is definitely moving in the right direction! Thank you for your prayers!
Sam still has a very long road ahead of him. Our reality is that Sam will remain in the PICU for more weeks to come. We are preparing ourselves for this and will continue to move forward as Sam does. We are very focused over the next week or so that more improvement in the kidneys return, allowing Sam to be further removed from dialysis (which he remains on currently) and allowing his breathing tube and deep sedation to be decreased and removed.
It is a trying time, but your prayers and support are getting us through this. Thank you all! Please continue your prayers for: Sam's healing to continue; the doctors and nurses to make the correct decisions; for all those children here who don't have family and friends available to them; and for.........PEE.
We'll keep you posted,
Jonathan
Friday, April 8, 2005 9:21 PM CDT
Good Friday evening. It's been a couple of days since our last update, and Sam has moved more forward than backward.
Thursday morning, it was noted by the doctors that Sam's abdomen was swelling with fluid. Multiple reasons existed as to the cause, and decisions had to be made to determine if the fluid should be drained or to take a wait and see approach. The concern about draining the fluid was that it would increase Sam's chances for another infection, and draining the fluid would not necessarily fix the problem. A sonogram was performed on the abdomen, and the results were reviewed by the Radiologist, Surgeon, Oncologist, and Intensivist. The decision was made to monitor the abdomen and increase the amount of fluid pulled out of Sam with the dialysis machine. By today, the swelling has subsided, and the Surgeon believes that it was more than likely the result of the surgery. This should continue to improve in the days to come.
Sam has had relatively good days both Thursday and Friday. Thursday evening, he became more "alive". The nurses had slightly reduced the amount of paralyzing, sedation, and pain-relief medications. He was moving around and squeezing our fingers! This was great! However, the downside of this was that he became very agitated with his breathing tube and was thrashing around to the point that it put his dialysis line in jeopardy. Later Thursday night, the decision was made to give Sam a little more of these medications to keep him comfortable and to ensure none of his IV lines are at risk.
Throughout the last couple of days, Sam has remained on dialysis. The plan is to take him off dialysis Saturday morning, giving his kidneys another "test". My guess at this point, is that sometime Saturday night/Sunday morning, another kidney sonogram will be performed to observe blood flow and to see if the boy can pee.
This morning, the nurses did a quick "in and out" catheder to drain any possible urine buildup in the bladder. The nurses actually let me hold the tube into the cup. Granted I had to bite my lip during the insertion, but it was worth it when 10cc of urine-like substance came out! Now, keep in mind that 10cc is barely anything, but at this point something is better than nothing!
It has been exactly one week tonight at this time that we were waiting to see Sam after his surgery. We are amazed at the number of people praying for Sam and us. Thanks to each of you, we are getting through an indescribable week.
We ask for your contined prayers for each of these kids in the ICU. They and their families need your prayers. Of course, you know the drill by now......PEE SAM PEE!
We'll keep you posted,
Jonathan
Wednesday, April 6, 2005 7:54 PM CDT
Good Wednesday evening. It's been a busy couple of days here at the hospital. We've had some good news about Sam (which we really needed to hear!). Here's a recap of the last two days (from the best I can remember):
Tuesday:
Sam's lungs had much less fluid than Monday. This was great to hear. Early in the day, the doctors took Sam off dialysis to test his kidney function. A sonogram of his kidneys were made to determine if any blood flow to them had returned. We were told that some marked improvement of blood flow returned to the left kidney! It is not to the proper level, but it is a start. No visible signs of blood flow was recognized in the right kidney, but it still may return in the future.
Sam's urinary tract infection was being treated with antibiotics.
Later in the day, a catheder was inserted in Sam briefly to see if his bladder had any urine (or urine-like substance) since he was not receiving dialysis. We held our breath (my especially since I watched the insertion of the catheder!) and Sam gave us approximately 40cc of urine!!!!! Thank you for your prayers!
This was a very good sign! Now, this does not mean the kidneys are functioning properly, but it is a start. As a point of reference, Sam should produce roughly 12-20cc per hour in order to be borderline renal failure. So, he still has far to go, but something is better than nothing!!!
The decision was made to put Sam back on dialysis. Based on the number of doctors involved, is the best overall practice. This allows Sam's kidneys to rest and recover for a couple of days before allowing him to try again.
We received some great news about Sam's tumor. The pathology tests revealed that the tumor is very mature, an indication that it is dying. Therefore, although all visible tumor was removed, if any tumor still remains, it should have the same histology as the tumor that was removed (meaning, it should be dying as well)! This is the best news we could have received from the pathology report. Thank you for your prayers! What this means at this point, is no more treatments for the tumor are planned (i.e., no chemo, etc.).
For the first time in a few days, Sam's sedation was reduced, allowing Sam to move a bit, react to being touched, and slightly open his eyes! This does not mean that he remembers/recognized anything, but it felt good to see him in a less sedated state; however, he did begin to be agitated with his breathing tube and some of his IVs.
Late Tuesday night, we had a bit of a scare. One of Sam's IVs in his left arm became infiltrated, and his arm swelled. This IV controlled his pain medication. The doctor quickly decided to insert a new line in Sam's neck. We were nervous, but the doctor and nurses moved fast and fully sedated him prior to inserting the line. Overall, this will be better for medication issues going forward.
Wednesday:
Sam has had a relatively calm day. We received good news on his infection: the infection levels have dropped significantly and have been contained! Thank you for your prayers! He has remained in a sedated state because they want to limit his movement while he is on dialysis. The machines and tubing are very sensitive to movement.
The nurses removed the tube in his nose that was draining fluid from his stomach. They inserted a tube in his nose to begin giving Sam nourishment. Now that the abdomen has had a few days to heal, the doctors want to begin giving Sam nourishment to wake up those organs.
Sam has maintained very well throughout the day. As you can tell by all my exclamation points, all of us feel better than on Monday! Your prayers have gotten us through these last couple of days.
We ask for continued prayers for: the doctors and nurses to continue making the right decisions; Sam's body continues to heal; the other children here to improve and go home; and PEE SAM PEE!!!
We'll keep you posted,
Jonathan
Monday, April 4, 2005 7:58 PM CDT
Good Monday evening.
I have just a few minutes to update everyone. As I left the prior update, Sam was to begin receiving dialysis due to kidney failure. At this point in time, Sam's kidneys have not yet begun to function. He has received dialysis since early Sunday morning. The dialysis has made a substantial improvement in Sam's overall condition. His potassium and creatin levels are again normal and the myoglobin, which is an indicator of muscle tissue deterioration, has reversed significantly. Sam's swelling has basically disappeared! Praise to God!
There have been numerous doctors assessing Sam's state. The consensus is that they are still optimistic that the kidneys will begin functioning at some point. They have begun preparing us that this could take a couple of weeks for them to begin working again. That was a hard pill to swallow, but we are dealing with it. As they have told us over and over, his kidneys have been through a series of difficult process, which have weakened them.
Today, it was determined that Sam has a urinary tract infection, most likely due to the catheder has has. This was removed and he is on antibiotics. We are asking for prayers that Sam fights off this infection and NO more infections to occur. The body can only fight so many infections.
Tami is simply amazing. It breaks my heart she can't hold Sam.
Sam's vitals remain incredibly strong, thank God. He is stable and has been for quite some time. The doctors have said now is the waiting game. We've got to give Sam time for his kidneys to heal and begin producing urine.
The doctors, friends, and family have been talking to us about going home and getting some sleep, since Sam is fully sedated and unconscious. We finally made that step last night, although it was difficult. As Tami said, "My umbilical cord was stretched all the way back to the hospital!"
Many people have been asking what they can do. What we simply ask is to do some hard-core praying for: Infections to stay away! Vitals to remain stable! KIDNEYS TO BEGIN WORKING SOON! PEE SAM PEE!!!!!
We'll keep you posted,
Jonathan
Saturday, April 2, 2005 9:19 PM CST
I wanted to quickly give everyone an update. I don't know if I can cover everything that has happened since Friday morning, because I am waiting for the doctors' to allow us to see Sam again.
Sam had his scheduled surgery Friday. He made progress; however, he also has had some setbacks.
We arrived at the hospital Friday morning at 9am. Sam was in great spririts, entertaining everyone on the hospital floor! Sam was sedated at 11:00am and taken into surgery at that time. We received a few updates throughout the day, but he left the surgical area at approximately 8:30pm and was moved into the Pediatric Intensive Care Unit (PICU). We were allowed to see him at approximately 9:30pm.
After the surgery, the surgeon came out to review with us what took place and what we should expect. He was able to remove all visible tumor! Essentially, he removed a dumbell shaped tumor that was estimated to be the size of 1 1/2 golf balls. The tumor encased Sam's adrenal glands. This is where the tumor originated. Because of this encasement, along with the strong possibility of tumor cells present in the adrenal glands themselves, they elected to remove both adrenal glands with the tumor. This is ok. Sam can have his adrenaline, glucose, and cortec production replaced by taking a pill.
Sam looked great coming out of the operating room. This surgery was classified as a "near-total resection". This means that all visible tumor was taken; however, some tumor cells still may be present in certain vessels. The surgeon felt these vessels and could not determine if any cells were present; however, it would be far too dangerous to open these vessels to see if any actual cells were there. This is about as good a procedure as Sam could have had.
This was a very long, hard, complicated surgery. No one, including the doctors, thought it would last quite this long (9 hours). As a result, Sam is on a ventilator, which is managing his breathing currently; he has a tube in his nose which is draining fluid from his chest; he has 5 or 6 different IV lines administering pain relief, sedation, fluids, etc.; a catheder to drain urine. This is the focus of the setback currently.
As of this time, Sam's kidneys have not begun functioning. Currently, he is classified as having kidney failure. Many tests were performed today to get the kidneys working and determine why they aren't working. A pediatric kidney specialist came from Ft. Worth to examine Sam and several scans taken of his kidneys. Originally thought to have had Renal Vein Thrombosus (?), that is a blood clot in the renal vein to the kidneys, was now diagnosed to be Acute Tubular Narcosis (ATN).
Basically, Sam's kidneys have gone through hell. The 8 cycles of chemo have damaged the kidneys (always known as a side effect of chemo). The trauma of a 9 hour operation put a lot of strain on the kidneys. And, as the specialist put it, this was a big, bad tumor that was on top of the kidneys from the start. The specialist feels comfortable that Sam's kidneys will begin functioning in about a week.
So, what is happening: Sam has swelled with fluid significantly. He has produced no urine and has received a lot of fluid since yesterday. With no exit, the body absorbs it. As I type, Sam is in surgery to have another catheder inserted in his groin for dialysis, as well as another IV in his neck.
Sam will begin receiving dialysis until his kidneys begin functioning. We are ready for this because we want the swelling to subside. His vitals are very good. He will remain in the PICU for several days, until his kidneys begin to work.
I know this update is sporatic at best, and I am sure I have missed much more I should communicate. Unfortunately, I've got to run. Thank you for all your prayers! Keep them coming!
I thought I would never ask God for such a thing, but please pray that I will see Sam pee soon!
Thank you all!
Jonathan
Sunday, March 27, 2005 12:39 AM CST
Happy Easter!
We hope everyone is having a wonderful day. Sam has received many Easter treats and mommy and daddy have enjoyed the candy!
Sam is scheduled to have surgery this coming Friday. We've had conversations with the surgeon and Oncology Team. At this point, they hope to go in and remove what they can. Based on the remaining tumor's position, it is not probable that all of the tumor will be successfully removed. However, the surgeon and Oncologists believe going in and testing what is removed to determine the status of this tumor makes the most sense, and we agree.
The plan is to make an incision across Sam's belly. Whatever is removed will be immediately sent to the Pathology Lab for analysis. As the surgeon put it to us, a scan will only tell you so much. Now being able to test the tissue and actually seeing the tumor will provide much more information.
Sam has had another good week. He's running around, talking a mile a minute, and growing hair. His favorite food right now is blueberries. He eats them until his tongue is blue.
Well, that's about it for now. We'll keep you updated on what happens next week. Thank you all for your continuing prayers! Please pray that the tumor is showing signficant signs of dying and that no other treatment will be necessary. Please continue praying for Sam's friends Lizette and Hayden!
Take care,
Jonathan
Sunday, March 20, 2005 8:27 PM CST
ALERT! NEW PICTURES POSTED!!!!
Good Sunday evening!
We just wanted to update everyone from last week's posting. This past Thursday, one of Sam's Oncologist called Tami and let her know that based on the surgeon's review of Sam's scans, he would like to proceed with surgery to remove the tumor. The only information told to us is that the surgeon will not know how simple or complicated the procedure will be until he gets inside. We have a meeting scheduled with the surgeon Monday afternoon. We'll have plenty of questions for him. This is the same surgeon who performed Sam's biopsies in September.
Sam has had a great week, and continues to improve in all facets. As you can see in the pictures posted, he is looking much better!
Thank you all for getting us through this. We are anxious to learn more about the next steps. We ask for continued prayers for healing and good health for Sam and all those who are afflicted.
We'll keep you posted,
Jonathan
Wednesday, March 16, 2005 12:41 AM CST
I just wanted to give everyone an update from last night's entry:
Tami talked to one of Sam's Oncologists a little while ago. They have reviewed his CT and bone scans. Here's a summary:
- There is marked improvement in the chest. In fact, there appears to be nothing left in the chest!
- The tumor in the abdomen appears to be significantly smaller, more matured, and more calcified (a reflection of the tumor dying!)
- The tumor is still around the aorta and major blood vessels
- It appears to not be an active tumor!
Here is what is going on now:
- The surgeon is in the process of reviewing the scans. The Oncology Team will be meeting with him either today or tomorrow to determine if they want to consider recessing the tumor. Given that it is still around the aorta and blood vessels, we have no idea what the possibility of this could be.
- The other option being considered is to repeat the scans at some point and monitor the tumor for a period of time to determine if it will destroy itself.
- They are to call us back tomorrow with any conclusions made.
What are we to do next:
- They would like to perform a urine test next week to give them another indication if the tumor is in fact dying.
Given all that, we are very pleased. This is probably the next best result (the best being that the tumor is totally gone) we could have received. Hopefully over the next week or so, we will have some more definitive answers.
Thank you all for your thoughts, prayers, and support. They have worked miracles!
Once we hear more, I'll pass it along.
Take care,
Jonathan
Tuesday, March 15, 2005 7:21 PM CST
Good Tuesday evening.
To update everyone, we had an early start to our day. We were scheduled to check into the hospital at 6am this morning to have Sam begin his preparation for his testing. Sam decided to make sure we wouldn't be late so he awoke at 3:30 this morning and decided to stay up.
Sam was scheduled to receive a CT scan of his chest, pelvis, and abdomen as well as a bone scan of his entire body. Sam had to spend an hour or two drinking a nasty solution called contrast, which is to help the tumor cells glow better during the scan. Needless to say, Sam is very strong-willed, and all I can say is that he did end up drinking some of it. I don't blame him for not wanting that stuff.
Things did not go as smoothly as our previous hospital visits. Whoever is responsible for scheduling tests apparently did not have their act together for this one. Both the CT and bone scans, which are done separately and in different locations, were scheduled at the same time. This conflict caused delays in anything being done. Realizing Sam could not be in two places at once, we made our displeasure known. Sam's anethesiologist took charge and coordinated the CT scan first. Sam was sedated and the scans occurred at approximately 9am.
At approximately 11:30am, Sam was brought into radiation to receive his bone scans. This entails him lying flat and still for approximately 20 minutes while a giant flat plate above and below him takes pictures. Now, if you have had a 15 month old child, you know that he/she is not going to just lie still that long. The typical procedure is to strap the child down. We advised them that is a hopeless cause with Sam. Against our advice, they tried, and like we thought, they could not get him strapped down. They both stated, "He's a very strong boy". They should never doubt his mother. Plan B was to see if we could get him to go to sleep. We spent approximately 15 minutes rocking him until he fell asleep. I think the radiologists realized they were just going to have to wait until this boy is ready for those scans. Sam fell asleep and the scans were completed.
At 1:30pm, we went to the doctor's office for blood tests and to see if the scan assessment had been made. The blood tests revealed that his counts look great at this time. The doctors are please by the way Sam is looking, acting, and feeling.
At this time, the doctor's had not received the scans. They decided to send us home and once all the doctors have reviewed and assessed the current status, they will give us a call. We were hoping to hear something tonight, but we have not. Hopefully we will hear something tomorrow morning.
That is all at this time. Thank you all for the prayers, notes, messages, and calls. We feel your strength!
As soon as we hear, we'll let you know!
Take care,
Jonathan
Tuesday, March 8, 2005 7:27 PM CST
Good Tuesday evening!
I apologize for taking so long to update this page. To update everyone on the latest, Sam has had two follow-up doctor visits for blood tests, which revealed his counts have remained strong. He has not had to receive any shots for a week.
We are now in the process of scheduling his next series of scans. He is tentatively scheduled to have scans of his chest, pelvis, and bones sometime next Tuesday. The doctor's office should be calling us in the next day or so with a specific time.
We are getting very antsy to have these scans. Based on what they reveal, this will determine what happens next.....your guess is as good as ours.
Sam has been walking all over the place! He loves being outside. Going INside is not something on his agenda these days! He has also turned into a talker. He has very important things to say, and he wants to make sure you hear him! It appears his eyelashes are getting longer (as they were before chemotherapy). His "peach fuzz" hairdo is coming in stronger....he looks like a spring chicken.
Okay, we are asking for special prayers over the next week: We are praying that these scans show that this tumor is dead! That Sam will not need further chemo treatment or any other treatment! That these eight rounds of chemo have done their job in destroying this cancer! Pray for Lisette and Hayden!
We'll keep you posted,
Jonathan
Tuesday, February 22, 2005 6:58 PM CST
Good Tuesday evening!
To update everyone, Sam entered the hospital yesterday to begin his eighth cycle of chemotherapy. He received two types of medicines: Adriamyacin and Cytoxcin. Sam finished these medicines approximately 9pm.
Subsequent to this, he began a type of medicine called IVIG Intravenous Immune Globulin Therapy. From what I understand, this is used to help activate specialized proteins made by the body's immune system. This lasted approximately four hours.
This morning, Sam received his breathing treatment (the same treatment he always receives). Sam is never a fan of this, but he gets through it.
Overall, Sam did extremely well considering how the last couple of rounds have gone. He did not get sick (and we hope he doesn't!) and is full of energy as we speak. In fact, he and Tami are playing chase around the coffee table, and I am getting ready to join on the fun.
We now begin shots for the next 10 days or so to help stimulate white blood cell production. Sam handles these remarkably well too.
Next, is the waiting game.......about three weeks until his next set of scans: a CT scan and a bone scan.
Thank you all for your prayers! They kept Sam's spirits and strength strong while going through this last cycle!
We'll keep you posted on how he weeks go.
Take care,
Jonathan
Tuesday, February 15, 2005 7:35 PM CST
Good Tuesday evening!
To update everyone, Sam still has the Rotavirus, but does not have the C-diff bacterial infection anymore. Throughout Sunday and Monday, Sam continued to improve (no fever), except for the diarrhea he continues to have.
His blood tests today indicated that his white blood cell counts are low again, most likely due to the virus he has. This would happen to anyone who had a virus, whether they had cancer or not. Since his counts are low at this time, the doctor recommended to postpone Sam's chemo treatment to next week. The doctor discharged Sam today to allow him to go home and rest up for next week! Although chemo is now delayed, it is nice to be home again! We hope to have a little "normalcy" for the next few days before entering the hospital again.
Thank you all for your continued thoughts and prayers. Your prayers allowed Sam to sleep better throughout the nights at the hospital.
We'll keep you posted as to what transpires next week.
Take care,
Jonathan
Tuesday, February 15, 2005 7:35 PM CST
Good Tuesday evening!
To update everyone, Sam still has the Rotavirus, but does not have the C-diff bacterial infection anymore. Throughout Sunday and Monday, Sam continued to improve (no fever), except for the diarrhea he continues to have.
His blood tests today indicated that his white blood cell counts are low again, most likely due to the virus he has. This would happen to anyone who had a virus, whether they had cancer or not. Since his counts are low at this time, the doctor recommended to postpone Sam's chemo treatment to next week. The doctor discharged Sam today to allow him to go home and rest up for next week! Although chemo is now delayed, it is nice to be home again! We hope to have a little "normalcy" for the next few days before entering the hospital again.
Thank you all for your continued thoughts and prayers. Your prayers allowed Sam to sleep better throughout the nights at the hospital.
We'll keep you posted as to what transpires next week.
Take care,
Jonathan
Saturday, February 12, 2005 6:13 PM CST
Good evening to all,
In one of my early updates, I noted that we were told we would be in for a rollercoater of a ride. How true this is.
This past Thursday evening, Sam began running a slight fever. Protocol states that if a temperature is at 101.5*F or higher, Sam is to go to the hospital immediately due to his body's inability to fight off infections as a result of a compromised immune system. At 3:30am Friday, Sam woke up with a fever of 102.4*F. We immediately called the doctor and went to the hospital.
Apparently everyone is sick this time of year because all the rooms on the Oncology floor were full. They found a bed for Sam in the Pediatric Intensive Care Unit. The nurses in the PICU began their testing process which included a cathedar for testing of a urinary tract infection. They also started an IV drip with fluids and antibiotics. Sam was fairly traumatized throughout Friday, but handled things well overall.
At approximately 5pm Friday, a room was available on the Oncology floor. We were excited to move out of the PICU. Sam still had a fever but the fever remained at 99-100.5*F. Sam ate well and was playful. At about 5am Saturday, Sam's fever appeared to have ended. Throughout today, his temperature remained normal and he seemed better.
At this point, we were told Sam might be discharged today; however, more tests were performed today to determine any other risks. Tests revealed that he has a virus called Rotavirus. It is a fairly common virus that affects infants, and it affects the digestive system. It is very contagious. This virus has given Sam diarrhea. A stool sample test indicated that Sam also has a bacterial infection called C-diff(?). This infection, ironically, is a result of the use of antibiodtics which attack bad bacteria but also attacks good bacteria.
Sam's hemoglobin counts are low, which is not unusual given the number of times he has received chemo. At the current time, he is receiving a blood transfusion to help increase his blood counts.
The doctor has advised that Sam should remain in the hospital to ensure he has recovered from the virus and infection. Once he is free of these, they would like to begin the eighth cycle of chemotherapy. We expect to be in the hospital for the next several days.
Sam is doing good; however, he has been traumatized somewhat the last couple of days. Today, he accidentally pulled his IV line out of his chest somewhat, which scared him pretty bad. After some time calming down though, he was back to playing. All Sam wants during these times is his momma.
Overall, we are holding up well. They are to move us to a bigger room tonight so we are excited about that. Thank you all for your continued prayers! Please pray that the virus and bacterial infection quickly leave Sam's body; that his blood counts improve; and that he will be able to start his chemo very soon!
Thank you all!
Jonathan
Wednesday, February 9, 2005 9:05 PM CST
Good Wednesday evening!
Sam, Tami, and I hope everyone is doing well. To update everyone, Sam has been home for the last couple of weeks, spending his days learning how to walk. With each passing day, he's taking more and more steps. He's still a world-class crawler, but he definitely has begun the transition to being upright!
Sam had a follow-up doctor's visit today to draw blood and review his counts. His counts look good overall (they are not perfect, but they are good). He is now scheduled to return Monday (Valentine's Day) to the hospital to begin chemo cycle #8. Sam is now in his fifth month of chemotherapy. We are very anxious to get this round started, as Sam will be scheduled to receive a CT scan in the next month or so. At this point, we have no idea what is in store for Sam. The next scan will determine the next course(s) of action. Right now, we are just focused on next week.
Sam has become full-fledged boy. His head is covered in bruises from falls and running into things. Last week, Sam took a nose-dive off the bed and landed head-first onto the hardwood floor. The acrobatic exercise resulted in a bloody lip and skinned chin and nose. He resembles Popeye to a certain degree now.
Thank you to all who continue to post wonderful words on this website, as well as to those who we have spoken to over the last several months. Your love has kept us strong.
Please continue to pray for Sam's friends Lizette and Hayden as they continue their chemo and radiation treatments. Please pray for all those afflicted and do not have the support we have.
We'll keep you posted,
Jonathan
Thursday, January 27, 2005 6:49 PM CST
Good Thursday evening!
Sam was discharged Wednesday afternoon after receiving his third day of chemo and his breathing treatment (to help prevent pulmonary infection).
After the rought time Sam had on Monday night/Tuesday morning, he has fared much better! Thank you for your prayers!
Sam's blood counts are very low. This is not unexpected given the number of times he has received chemotherapy over the last five months. Although he has not received a blood transfusion since September, his chances increase going forward to receive one. Given all this, he is still as active and happy as can be! He is wearing me out chasing him!
We have begun his daily injections to help stimulate the production of white blood cells. He handles these shots better than me! We should have named him Clark Kent--he's the real Superman!
On the homefront, Sam is contiuing to take steps! Although he is not walking too far yet, the frequency of these "trips" occurs more each day. It's just a matter of time now.....
Sam is scheduled for his follow-up doctor's visit next Wednesday. At this point, his blood counts will be reviewed to determine how good/bad his overall counts are performing.
Thank you for your continuing prayers and support!
We'll keep you posted.
Jonathan
Tuesday, January 25, 2005 4:16 AM CST
Good early morning to all.
To update everyone, Sam went in yesterday to have his blood counts reviewed. Good news! His counts are back to normal! He immediately entered the hospital to begin his seventh cycle of chemotherapy.
Sam's chemo started around 5pm and finished around 8:30. He ate well and played well! Starting approximately 1am, Sam began to get sick. He has gotten sick multiple times tonight, but is currently sleeping.
Sam is scheduled to receive chemo today and Wednesday. If all goes well, Sam should be discharged Wednesday afternoon.
Thank you for the prayers! God answered them! Please pray that Sam will not get sick anymore and he will feel well!
We'll keep you posted,
Jonathan
Monday, January 24, 2005 8:24 AM CST
Hello to all!
To update everyone from last week, Tami took Sam last Monday to the doctor's office to have a blood test. The results indicated that Sam's white blood cell count was very low, in fact, lower than the week before. The decision was made to wait a week to see if his counts returned to a normal level. This has to occur in order for Sam to begin another round of chemotherapy.
Sam is scheduled to go back to the doctor this morning. We are packing as if he will be ok and to begin another round of chemo. If his counts are still low, I'm not sure what will happen. Either the doctor will send him back home or they may advise Sam to receive a blood transfusion.
This extended low period is not unusual. In fact, we have been very blessed that it has not occurred until now. Goes to show you, Sam's one tough son of a gun.
Please continue your prayers for Sam's counts to be back at the normal level in order to begin his seventh cycle of chemotherapy. Thank you for your prayers. Looking at Sam's strength and happiness is result of your prayers!
We'll keep you posted as to what happens today.
Jonathan
Sunday, January 16, 2005 7:34 PM CST
Good Sunday evening!
NEW PICTURES OF SAM PUBLISHED!!!
We hope everyone is doing well. To update you on Sam, he completed his sixth round of chemotherapy on January 4th. This round was tougher on Sam than the previous rounds; however, he still handled it extremely well considering all the medicine he was given.
Last week, Sam had a follow-up doctor's visit to assess his blood counts. His counts were still low. In fact, the doctor considered having Sam receive a blood transfusion; however, since Sam appeared to be looking and acting well, the decision was made to continue his injections for a few more days. He is scheduled to have another doctor's visit tomorrow to determine if his counts have increased. His counts must return to a more normal level in order for Sam to begin another round of chemo.
I don't know if I've told you, but Sam's mommy is the best mommy ever.
Over the past week, Sam is getting closer to walking. In fact today, while Sam and I were visiting Uncle Philip, Sam decided to stand up and walk to us! He did this over and over until he was tired. Of course, when we got home and tried to show mommy, he decided now is not the time to perform. We'll have to wait and see when he wants to show off for us again.
We are praying for all of you. We hope that 2005 is the best year for each of you! Please continue your thoughts and prayers that Sam's counts return to a normal level, that the tumor is disappearing more and more every day, and that all of these kids will be free of these illnesses very soon!
We'll keep you posted,
Jonathan
Monday, January 3, 2005 7:47 PM CST
HAPPY NEW YEAR TO ALL!
We are starting this first Monday of 2005 in the hospital for Sam's sixth cycle of chemotherapy. He's his usual self: full of energy and wanting to scamble across the floor! We checked into the hospital at 10am today. He has been on fluids for the better part of the day to fully hydrate Sam prior to receiving his chemo. We're hopeful that the chemo will begin soon as it is almost 8pm.
Sam has had a good week. He has eaten very well and been very energetic. His sleep is still not ideal, but he'll get there.
Today, a hearing test was administered to Sam to determine a baseline of hearing. This helps in determining if Sam will lose/has lost any hearing as a result of his chemo. This is a potential side effect of chemotherapy. You may wonder how does one administer a hearing test to a one year old. It's amusing and pretty futile. Anyway, my guess is his hearing is fine.
This is considered his short cycle (we should be home tomorrow!). However, this may be a tough round on him. He is to receive three different medicines tonight, and two of them could be rough.
Thank you for all your prayers! Please keep them coming for this round to be easy for Sam to handle and for the chemo to really shrink this tumor down in size! Please also pray for Sam's friend Lizette who is undergoing radiation.
We'll keep you posted,
Jonathan
Monday, December 27, 2004 7:43 AM CST
Happy Holidays!
It's been a while since we last updated Sam's page. We had a great Christmas and are looking forward to a great New Year!
On Wednesday, December 22nd, Sam went to the doctor's office for his routine follow-up to assess his blood counts after receiving chemotherapy. His blood counts looked great. The doctor stated that Sam would be relatively safe being around people. After a brief chat with the doctor ( and Tami's cousin who is a Pediatric Oncologist), we made the decision to actually travel to Cleveland, Ohio to surprise Tami's family for Christmas!
We flew out Thursday afternoon. As many of you know, holiday travel is not picture perfect. On top of that, the midwest was receiving record snowfall. With all that, we did not arrive in Cleveland until approximately 1am Friday. Sam did amazing. Although tired, he maintained his happy disposition. He did better than his daddy.
On Friday and Saturday, everyone was able to receive some "Sam time". He was able to hang out with his little cousins, as well as all his other relatives. We ate until no more food could pass through our lips.
On Sunday, there was a party for Sam's great-grandmother Theresa Antonnucci. It was for her 90th birthday! Many of her friends were there, and they were able to visit with Sam.
We left Sunday afternoon and returned home approximately 10pm. Once again, he did great. He held court on the plane from Houston to Dallas. He likes his audience. It was a good trip and good for mama and daddy to get out of the house.
On the medical front, Sam is scheduled to begin his sixth cycle of chemotherapy on January 3rd. Between now and then, we will be relaxing and Sam will be hanging out with Grandma Selma and Grandpa Gappa.
Thank you all for the incredible cards and well-wishes we have been receiving! We hope that each of you are having as great a holiday season as we are! We hope and pray that each of you receive many blessings this holiday season.
We'll keep you posted,
Jonathan
Wednesday, December 15, 2004 7:22 PM CST
Good evening to all!
To update everyone, Sam entered the hospital Monday morning to begin his fifth cycle of chemotherapy. Currently, it is Wednesday night, and I'm typing this with Sam in my lap, so bear with me on some of my spelling!
Overall, the cycle went very well. Sam did not get sick at all and kept a strong appetite. On Monday, he did experience a little trauma when the needle into his port leaked fluid into his chest, causing a fair amount of swelling. Once this was corrected, the swelling dissipated, and all was well again.
Wednesday morning after his final dose of chemo, Sam received his usual breathing treatment to assist in preventing pulmonary infection.
We are very happy to be home once again. Five cycles down!
We are scheduled to begin his daily injections tomorrow night and return to the doctor's office next Wednesday for testing of his blood counts.
Thank you all for your continued prayers! They are reflected in Sam's smile!
We'll keep you posted,
Jonathan
Friday, December 10, 2004 5:14 PM CST
Hello all!
Today was Sam's scheduled scan. We arrived at the hospital at 7am to begin the process of getting him prepped for the scan. This involved Sam drinking a very unpleasant liquid to enable the tumor to glow during the scan. This helps the doctors assess the tumor. Tami and I were not very successful in getting Sam to drink the liquid, so a couple of nurses attempted the impossible. They had some success; however, Sam is a very strong willed boy. He only drank a limited amount, but it was enough for the liquid to do its job.
At approximately 10am, Sam was sedated for the scan. At 11am, Sam was given back to us, and he decided to take a little nap. At 1pm, we had a doctor's appointment to review the scans. To visualize how the scans appear, think of it as a loaf of bread that is sliced. Each scan is like a slice of bread. Multiple scans are taken, like each slice of bread. The process is to review each slice from top to bottom.
Based on the review, the tumor has continued shrinking! A rough estimate is the tumor has reduced approximately 50% from Sam's original diagnosis three months ago. Additionally, the portion of the tumor near the heart has shrunk significantly! In fact, it was not even measured due to how small it is!
The tumor located in the abdomen, although smaller in size, is still large. There is strong evidence of calcification (hardening of the tumor) which is good. This is an indication that the tumor is being destroyed.
We all agreed that the best action is to continue with another course of chemotherapy. This entails another four cycles during a 12 week period. We agreed that surgery at this point is still too risky based on size and location. The chemo has been effective and has not been too hard on Sam.
Beginning this Monday, December 13th, Sam starts his fifth cycle of chemotherapy. We are excited and thankful that this tumor continues decreasing and look forward to more destruction of that tumor!
We continue to be strong through your prayers! Please keep them coming! We need them!
We'll keep you posted,
Jonathan
Tuesday, December 7, 2004 6:50 PM CST
ALERT!!! NEW PICTURES OF SAM!!!!
Hello to all!
It's been almost two weeks since our last update. We had a wonderful Thanksgiving. Sam has done extremely well the last couple of weeks. He had a follow-up doctor's visit the Monday after Thanksgiving. His blood counts were ok overall; however, the doctor recommended that we extend his daily injections a few more days to ensure Sam's blood counts fully recover to a normal level.
This past weekend was a big one for Sam. On Saturday, we attended the Medical City Hospital Holiday Festival. It was great. We saw our good friends, Lisette Reyes and her mom, the great nurses-Kammie, Belinda, Deb,and many others, as well as Dr. Goldman (one of Sam's oncologists). The big event was Sam formally met Santa for the first time (please see the first picture for the event). Sam got along well with Santa. He specifically asked Santa that his scan, scheduled for this Friday, will provide excellent results.
Sunday was a day of excitement for us. Sam turned one year old! The "old man" enjoyed his day with family and friends. He received his first birthday cake, which apparently needed to be dissected with his hands. We are truly fortunate for Sam and all of us to celebrate this day.
This coming Friday, Sam is scheduled to receive a scan of his pelvis, abdomen, and chest. These scans will be reviewed by the oncology team and surgeon(s) to determine the next course of action. As mentioned in previous updates, next steps could include any of the following: additional cycles of chemotherapy, surgery, radiation, and/or to do nothing at all and monitor the situation. Basically, we must remain flexible for anything to occur.
We ask for continued prayers and thoughts for positive scan results. We pray for the tumor and any related cancerous cells to be destroyed, and for Sam's continued strong physical well-being.
Thank you each and everyone of you for your prayers!
We'll keep you posted,
Jonathan
Thursday, November 25, 2004 8:06 AM CST
HAPPY THANKSGIVING!
We have so much to be thankful for today! Sam is doing very well. It even appears the daily shots are not bothering him as much as they had in previous cycles!
We are so very thankful that Sam is here and doing well;
We are thankful that his condition was caught when it was;
We are thankful for his doctors and nurses taking such good care of him;
We are thankful that the tumor is shrinking;
We are thankful for our family and friends being here to assist us in every way;
We are thankful for the countless emails, letters, and visits by all of you to provide us comfort and support;
We are thankful for Sam's smiles and laughter;
I am thankful that I am married to the most beautiful wife and mother in the world;
We are thankful for all the prayers for Sam and us (and they have been answered!);
We are thankful for the strengh God has given us;
We are thankful for every one of you being in our lives.
Have a great Thanksgiving!
Sunday, November 21, 2004 9:01 PM CST
Good Sunday evening!
Following up from Friday's posting, Sam completed his third day of chemo, along with his breathing treatment, on Saturday and was discharged in the afternoon! Both Friday's and Saturday's treatments went very well. The good news is that Sam did not get sick on Saturday or today! Also, many of the kids who were at the hospital were being discharged this week.
Today, his appetite has been somewhat weak, but that is to be expected following three days of chemo. Sam begins the "down" phase of his cycle this week. We also begin on Monday administering injections to help keep his white blood cell counts high.
Dr. Goldman told us that some big decisions will need to be made once the tests have been completed in the next few weeks. I think everyone is getting anxious for that time to come.
Your prayers are being felt by us! Please pray for our doctors to continue the correct course of treatment as well as making the correct decisions for Sam in the coming weeks.
Take care,
Jonathan
Friday, November 19, 2004 11:18 AM CST
Hello to all!
I apologize for not being as proactive in updating this site the last couple of weeks. One of our nurses at the hospital (yes, Kammie, I'm talkin' about you!), has properly scolded me on my inadequate response time.
To update everyone, Sam re-entered the hospital Thursday morning to begin his fourth cycle of chemotherapy. It is a three-day cycle with Thursday's medicines the most difficult (hopefully!).
His blood counts looked very good, and the actual chemo began around 6:30pm. It was approximately 12:30am when he completed all the medicines. There were issues with his IV pump malfunctioning and a small leak with the tubing to his port, which resulted in some delays throughout the night. However, he got his medicines!
Friday morning, Sam did get sick which we somewhat expected. The Carboplatin and/or the Adriamyacin appears to be the medicine(s) which affect him the most. Surprisingly, his appetite seems to remain fairly strong!
Dr. Goldman, one of his Oncologists, stopped by around 9am. We "quizzed" him more as to the next steps after this cycle of chemo. He stated that in approximately three weeks, Sam will receive additional tests and scans. From this, consultations amoung the Oncology Team, surgeons, and others will be made to determine the next series of actions to take. Dr. Goldman stated that next steps range from: continuing chemo, performing surgery, radiation, or doing nothing and letting the tumor destroy itself (if destruction has progressed to an advanced stage). In a nutshell, anything and everything is a possibility at this point.
Sam's surgeon who performed his biopsy stopped by as well. Being an auditor for more years than I care to remember, I asked him the same questions as we did Dr. Goldman to determine if his answers would be consistent with Dr. Goldman's. They were (just checkin' guys!).
In terms of surgery, it appears the focus of risk is if the tumor is still around/near Sam's heart. Although this type of surgery can be performed by a Pediatric Cardiologist, it is risky.
From my basic understanding of all this medical mumbo-jumbo, the doctors really want to determine from the tests if the tumor has the ability to destroy itself first without surgery. They are very pleased with Sam's physical appearance and well-being, and they want to avoid any additional trauma to him if it is possible. If the tumor cannot destroy itself, then the next step would be more chemo, radiation, etc.
Basically, we just have to be flexible and see what next month's procedures will determine for him.
Tami, aka SuperMom, is radiant-looking, as always.
The hospital is full with kids this cycle. We have seen some of the families from our past cycles, and it has been great to see them and catch up. A group from Compassion Companions was here with a dog visiting the kids. All of us congregated in the Playroom to see the dog. Sam was fired up! My fear was that Sam was going to pull the dog's fur (as he has been known to do in the past); however, he surprised me with his ability to actually pet the dog........no, this does not mean he needs a pet dog for himself at this point!!!!
Sam's schedule today is to receive another single round of VP-16 in the early afternoon and receive his breathing treatment for preventing pulomary infections. He will then receive another dose of chemo tomorrow, and hopefully, he will be discharged in the evening!!!
Thank you all for your continued prayers for Sam and us. We are praying for all of you too! God and you are keeping all of us strong.
We'll keep you posted. Take care.
Jonathan
Sunday, November 14, 2004 7:33 PM CST
NEW PICTURES OF SAM POSTED!!!!!
Hello to all! It's been two weeks since we've last updated this page. Time has been flying by (which to us is a good sign)!
I was reviewing some of the previous journal entries and noted it has been exactly two months today since Sam received his diagnosis. It's been an amazing journey these last two months and incredible progress has been made since that Thursday in September when Sam was originally admitted to the hospital for testing. We have been very blessed and have so much to be thankful for.
Since the last update, Sam recovered well from his low point. He did catch a cold, which made it difficult for him to breathe. For a few days, Sam had a slight fever, which we monitored very closely (believe me, Tami was checking that temperature hourly!). As of today, he seems to have begun recovering from the cold.
The doctors continue to be pleased with how he is reacting to the treatments. We are scheduled to enter the hospital for the fourth round of chemotherapy this Thursday, November 18th. Tami and I are excited that we are already at the fourth round!
We will be in the hospital for at least three days. He will be receiving three different types of medicines over the three days. The types of medicines are called Etoposide (VP-16), Carboplatin, and Doxorubicin. They are all medicines that Sam has had previously. The Doxorubicin seems to be the most aggressive as it has been the hardest on Sam. He will also receive another breathing treatment once the chemo has ended to help prevent pulmonary infections.
Tami continues to be the frontrunner for mom and wife of the year.
The question on everyone's mind is: "Is this the last round of chemo?" The doctors don't know yet. Once Sam has completed this cycle, he will receive additional tests and scans to determine the next course of action. This will probably occur sometime in December.
It has been utterly amazing the amount of prayers, love, and support that has been surrounding us. God has taken care of us by having everyone of you helping us through this!
We ask for continued prayers for Sam's tumor to not cause him any pain, the tumor to shrink to a size in which no more chemo will be necessary after this next round, and for all those afflicted to find strength in our Lord Jesus Christ.
We'll keep you posted on the next round.
Take care,
Jonathan
Monday, November 1, 2004 7:28 PM CST
ALERT! NEW PICTURES OF SAM IN HIS HALLOWEEN COSTUME!
We hope everyone had a great Halloween.
To catch everyone since Friday's posting, Sam received his last chemo treatment, of this cycle, on Saturday. Additionally, he received his breathing treatment in the early afternoon. Sam reacted incredibly well throughout this cycle. In fact, the doctors surprised us by allowing Sam to be discharged Saturday afternoon!
As I had mentioned in the last update, it appears the tumor has shrunk approximately 30%. We received the official report of the CT scan Saturday. The scan was taken of Sam's abdomen, chest, and pelvis. There is a lot of verbiage in the report that is way over my head; however, here is the jist of it: There is decreased bulk and increased calcification of the tumor (this is good). It continues to displace the pancreas and adjacent viscera. The tumor is approximately 17mm X 9mm. Previously, it was measured to be 19mm X 12mm.
We have begun Sam's daily injections to help maintain a higher white blood cell count. This is Sam's "down" week. We are scheduled to have a doctor's visit on Thursday for blood tests to determine how low Sam's blood count is.
Thank you all for your continued thoughts and prayers! Miracles are occurring! Please continue to pray for continued shrinking and continued good health for Sam!
Take care,
Jonathan
Friday, October 29, 2004 4:46 PM CDT
Hello from the hospital!
Let's get straight to it!
Sam was sedated and received a CT scan Friday morning to determine the progress of his chemotherapy treatments. This afternoon, Dr. Goldman stopped by to inform us that the tumor is shrinking! He estimates that it has shrunk by approximately 30-40 He was very pleased with the progress made after two cycles of chemo! The doctor also noted some calcification of the tumor, which means that the tumor has begun some destruction of itself. Urine tests have indicated dead cancer cells as well. Dr. Goldman also believes Sam is still on track to receive just four cycles of chemotherapy prior to any surgery. Thank you for your prayers!
After reviewing Sam's blood tests from Thursday, Dr. Goldman stated that all levels appear to be normal! Sam might be somewhat anemic however, which very well may be a side effect of the chemo.
As I'm typing this, Sam is in the process of receiving a dose of Etoposide (also known as VP-16). It is a clear fluid given intraveneously to interfere with the cancer cells' growth cycle, thereby destroying the cancer cells.
Earlier today, the hospital had a Halloween carnival on the second floor. Sam joined the other kids for a few minutes to have a caricature made of him. Sam the ham was in full force! Mommy was in full Martha Stewart mode decorating things for Sam. Daddy had to sample some cookies.....ok, several cookies.
Tami was asked to chat with a mother whose child is in the process of being diagnosed with a type of sarcoma. That is an excruciating stage. Please pray for this family. There are so many kids fighting so many things here. They are an inspiration to us all.
Sam is to receive his third and final dose of chemo of this particular cycle on Saturday. Subsequent to this, he will receive his breathing treatment to help prevent any pulminary infection. Once this is done, and if Sam is reacting to the chemo as expected, we may be discharged!
We could not have asked for anything better to happen to us! Thank you all! God's work is being done!
Take care,
Jonathan
Sunday, October 24, 2004 7:20 PM CDT
Good Sunday evening!
It's been a while since we've updated this webpage. Overall, Sam has been doing very well for the past week and a half. He did very well through his low period and is back to "normal". Although his sleep is still erratic, the amount of sleep has increased the last few days.
Tami and I are getting anxious for this next week. We are scheduled to return to the hospital Thursday morning for Sam to begin a three day session of chemo. Additionally, Sam is to receive a scan on Friday to determine if the tumor is shrinking (and shrinking to the expectations of the doctors). This will be the first time since prior to the diagnosis that we will be able to have evidence of progress.
Tami continues to be amazing and strong. It's evident where Sam gets his strength!
We hope to have more information for everone on the progress of "the shrinking tumor" by next week.
We thank you all for your continuing support and prayers. All of you have reached out to us in our time of need. We continue to ask for thoughts and prayers that Sam's tumor continues shrinking (and shrinking faster than expected!), that other children afflicted with this illness have the same support as we do, and that breakthrough research occurs quickly!
Talk to you soon,
Jonathan
Thursday, October 14, 2004 7:56 PM CDT
NEW PICTURES HAVE BEEN LOADED!
I've included pictures taken tonight so you can see how a baby acts with a low white blood cell count!!! Unbelievable!!!
Anyway, we wanted to update everyone since it's been a few days. Overall, this week has been pretty good. Sam's nausea ended Sunday (yeah!). The doctor believes it was a side-effect of the chemo. Throughout the weekdays, Sam has been great. His appetite has been strong (although not as strong as prior to the second cycle of chemo). He's crawling around faster than we can keep up! Daddy's knees aren't what they used to be.
At night, Sam has struggled falling asleep because he has been extremely uncomfortable. He will doze off; however, wake up suddenly and stiffen up as if he is in pain. This has been a concern for us.
Sam had his follow-up doctor's visit today to assess his blood count, as this is his "down" week. Overall, his blood counts are doing as expected. His white blood cell count is below normal; however, it is consistent with his level from the previous treatment. Therefore, we are encouraged that he will respond as he did before. The doctor was very encouraged at how good Sam looks. Based on how Sam is handling his chemo, the doctor is comfortable with Sam not returning until his third cycle in two weeks! Additionally, tonight was the last night we had to give him an injection (until the next cycle)! We still have to be very cautious over the next few days as Sam is still a high risk for infection (and we are entering the "sick" season); however, all prayers continue to be answered! Thank you all!
Regarding Sam's uneasiness at night, the doctor believes this relates to the injections we are giving him. A side effect of this medication is that it stimulates the bone marrow more than normal, which helps in the production of white blood cells. This stimulation causes the bones to ache. Therefore, Sam's pain is more than likely his bones aching from the medication. Hopefully, this will subside in the next few days, and Sam (and especially Theresa Ann) will get some needed rest.
For those of you who might be interested, there is a website that relays an incredible story of a little girl's battle with neuroblastoma and how she led an effort to increase awareness of pedicatric cancers, as well as raise a million dollars in the process. You can go to www.alexslemonade.com.
Everyday, Tami and I are touched by all the countless kind acts, words of encouragement, and most of all prayers. We whole-heartedly believe it is YOUR prayers that are keeping Sam strong, happy, and improving! We thank you all!
Jonathan
Sunday, October 10, 2004 7:49 PM CDT
Good Sunday evening!
To update everyone, we came home from the hospital Friday afternoon. Sam did very well with his treatment Thursday night and Friday. As a result of Sam getting a little sick Friday morning, the doctor had him stay to receive fluids until the afternoon.
Sam has done amazingly over the weekend! He has even slept better since being home! However, he has continued to get sick in the mornings for a couple of minutes. More than likely, it's a combination of the chemo he has received, along with the injections we are giving him daily. Hopefully, this will subside in the next few days.
On Thursday, the doctors told us some very encouraging news: as a result of additional reviews on the Shimada Classification of Sam's cells (by Dr. Shimada himself!), the histology has now been classified as favorable. What this essentially means is that a better chance exists for Sam to receive 4 chemo treatments instead of 8! The primary factor is the fact that Sam is less than 18 months of age. What will really determine this scenario is when he receives a scan prior to the third cycle of chemotherapy. This is a direct reflection of everyone's thoughts and prayers! Thank you!
What happens next: We are entering the "down" part of the cycle. Sam's white blood cell count begins dropping now and bottoms out over next weekend. Sam will be isolated now, especially as we are moving into the flu season. We are to have a doctor's visit on Thursday to draw blood to determine how low his blood count is. We will continue the daily injections at least through Thursday.
Tami and I are so grateful for every one of you. The strength you have given us is making this so much easier to deal with. Thank each and every one of you!
We ask for prayers that focus on breakthrough research on children's cancers. We hope that each of you have had a great weekend!
Take care,
Jonathan
Thursday, October 7, 2004 9:37 PM CDT
Hello from the hospital!
Sam just finished his second cycle of chemotherapy. It consisted of three different types of medicines which lasted about 4 hours in total. Earlier today, he spent a few hours receiving fluids to ensure he was fully hydrated prior to receiving the chemo. We had some issues with a leak out of his port which was the result of an improper needle. The nurse inserted a new needle which resolved the problem. Poor Sam had to endure a couple of "sticks". He's a tough son-on-a-gun!
We are monitoring him for some time because this round has possible side effects of bleeding in the bladder, vomitting, and mouth sores. We still have some hours to go before we'll know if he's in the clear.
The nurses have remembered our boy and have been excited to see him. We have also seen some of the families from our first cycle. We are very thankful that Sam's condition is as good as it is, as compared to some of the other strong kids at this hospital.
Tami and I celebrated our third anniversary yesterday. The best three years ever. Period.
Sam is to receive a breathing treatment sometime tomorrow. This is to help prevent any pulminary infections he could be at risk for. Subsequently, his blood will be reviewed and hopefully we'll be discharged!
Your thoughts and prayers continue to be the key to Sam's and our progress. We continue to ask for a focus on the treatment plan working as the doctors' hope and that Sam does not feel any of the possible side effects of the chemo. We also ask that you focus your thoughts and prayers on the 9 year old girl in the room next to us. She is also in her second cycle of chemo and is at a stage 4 diagnosis.
We will keep posted as to how the next couple of days go.
Take care,
Jonathan
Sunday, October 3, 2004 8:07 PM CDT
Good Sunday evening to all!
We've had a great weekend! Sam has been having so much fun that now we are having a hard time getting him to sleep! This weekend, all his protective strips that covered his incisions have fallen off. He's been crawling and pulling himself up all over the house. In the past week, Sam's top two teeth have cut through.
Sam continues to struggle sleeping through the night which is the one thing that we are focused on trying to change. We think there are a number of things that are in play here: a long hospital stay; a possible growth spurt; teething; and the effects of chemo. He's got a lot going on, so this is understandable.
In a few days we'll begin the second cycle. We are having too much fun to go back to the hospital; however, we are also somewhat anxious to get the next cycle completed.
Your prayers continue to be answered. Sam's albumin and protein levels were normal! He's never looked better in my opinion.
We thank God for everyone of you! You have inspired us so very much!
We'll keep you posted on this week's events.
Jonathan
Wednesday, September 29, 2004 6:06 PM CDT
We have added new pictures to this web page since Sam returned home!
We have been very much enjoying our time at home. Sam has been incredibly playful and fun. We are so very lucky. To update everyone on the last few days (and I apologize for not updating this page sooner!), Sam had another follow-up visit with the doctor this past Monday. Your prayers have been working--Sam's blood counts are very good! He also made it through the weekend without any issues (i.e., fever, etc.). The doctor was very pleased with Sam's overall condition. In fact, we do not have to give him any more injections until the next cycle of chemo! They are also testing his protein and albumin levels which we are waiting on the results.
Sam begins his second round of chemotherapy on Thursday, October 7th. A new drug will be introduced called Adrianmycin, which is a red liquid. It is to destroy cancer cells by interfering with the cancer cells' growth cycle. This medicine may be a little harder on Sam, but we'll just have to wait and see how he responds. He's done so well thus far, that we have nothing to complain about. The doctor thinks that we may only have to stay in the hospital one night! It all depends on Sam's reaction. This will be the shortest cycle Sam is to receive.
We are attempting to establish somewhat of a normal routine at least for this week. I returned to work today (although I accomplished nothing), and Tami continues to be the incredibly strong and wonderful mother she is day in and day out.
We continue to be so thankful for every one of you! All our goodwill has been a direct result of your thoughts and prayers! There are so many of you we have not had the chance to personally talk to, that we hope we will sometime soon! We ask that you please keep your thoughts and prayers going for Sam's continued happy attitude; for the continued shrinking of the tumor; and for all those less fortunate having to cope with similar challenges.
Enjoy today!
Jonathan
Sunday, September 26, 2004 12:37 AM CDT
It's Sunday afternoon, and we are enjoying every minute of it. Sam is crawling around the house, smiling, and focusing his efforts how far he can crawl without one of us chasing him down! Grandma Selma is playing the piano to the tune of Itsy-Bitsy Spider, Sam's favorite song.
We had a follow-up doctor's visit Friday morning in which they drew a blood sample from Sam. His white blood counts continued to drop quite a bit, which is what the doctor expected. He cautioned us to be careful this weekend, and we have another appointment on Monday morning to see if Sam's blood count levels are beginning to increase. We have been taking his temperature constantly, and he is doing great! His appetite has been incredibly strong. The boy likes to eat! The doctor told us to keep pumping in as many calories as possible.
The only symptom Sam has shown is that at times he seems very uncomfortable, especially in the middle of the night. He squirms, trying to find a comfortable position for himself. The doctor stated this could be where the tumor may be pressing on a nerve, organ, or spine making him uneasy. No one knows for sure. Other than that, you would not know anything is wrong.
Now that we are home, Sam is getting better about others holding him, specifically his grandparents and Aunt Terri. If I had as many people poking and prodding me, I wouldn't want anyone holding me either!
We continue to be overwhelmed by the outpouring of people to this web page, as well as those who have helped us at home and in the hospital, and especially all the prayers of support. We do not even know how to begin conveying how much all this means to us. We continue to ask for hope and prayers for Sam, hoping that his blood counts improve this week, and the chemotherapy begins to shrink that tumor!
Hoping you enjoy your Sunday as much as we are,
Jonathan and Tami
Thursday, September 23, 2004 10:25 AM CDT
WE ARE HOME!!!!!
On Tuesday, our doctor wanted us to stay one more night in the hospital because Sam was not eating, primarily because he had been receiving nutrients for over a week intraveniously. The nurses discontinued this Tuesday night, and his appetite returned Wednesday morning.
We met with our doctor again Wednesday morning and he released us. Sam's white blood cell count dropped by 60% from Tuesday to Wednesday, which was expected. Hopefully, he will stay immune this weekend. The doctor also told us that based on the pathology dept.'s review of the Shimada test, which looks at cell tissues, Sam's histology has been rated poor. What that means is that it appears more likely that Sam will have 8 cylces of chemo instead of 4 cycles. This rating is being reviewed by a national lab to see if it concurs. We've already accepted this and are ok with it. Whatever it takes to get Sam well is what we want. The doctor also told us that Sam will more than likely receive another blood transfusion prior to his second cycle.
Sam is crawlin' and havin' fun all over the house! He's enjoying his freedom from his IVs! Last night, he appeared to be a little out of sorts, but both Tami and I woke up in the middle of the night thinking we were still in our hospital room. My guess is that Sam was thinking the same way. I would think it may take a couple of days to get adjusted again.
We have a follow-up visit on Friday morning and again on Tuesday for blood work. The doctors are keeping a close eye on Sam's levels. We are also taking his temperature constantly and not letting him out of our site. The grandmas and grandpa are also part of Sam's "entourage". He likes it when his audience is focused on him.
The response continues to be overwhelming. It is truly having a positive impact on Sam, us, and our family. We ask that the prayers continue to focus on Sam's immune system and that the tumor does not grow any larger or change from the original diagnosis.
We look forward to providing more positive updates!
Take care,
Jonathan
Monday, September 20, 2004 8:42 PM CDT
As I sit here this Monday night, I'm typing in the dark of our room as Tami finally gets to step out of the room to eat dinner, and Sam is asleep while his lullaby CD plays.
We are totally overwhelmed and floored by the response and wonderful things each and everyone of you has stated on this web page. We are speechless. We truly feel the love and hope through each message. We have been truly blessed to have so many people stop by. Today, we had many of our wonderful friends from Southwest Airlines drop by to let Sam "ham it up" for them. He thoroughly enjoys having people around him......especially when he's the center of attention!
The doctor stopped by this morning and seemed encourage that we may be able to go home tomorrow! This assumes that Sam continues to maintain his strength and strong blood counts. We are very excited about getting the chance to go home; however, we do have a little anxiety because we have become accustomed to having our nurses at our fingertips when we think Sam may have a problem.
I had the dubious duty this afternoon of giving Sam a shot. He actually did better than I expected. I think it was because he was cradled in momma's arms. This is something that we will have to continue doing everyday. This injection helps maintain his blood counts at a higher level as we move into the riskier phase this week, in which he is more susceptable to infections. He also is to receive oral medication twice daily to help prevent pulminary infections (I think). He did not do so well with this. In fact, this evening, Sam immediately got sick after being administered this medication. We'll try again tomorrow.
Sam was also weaned off his pain medication completely a couple of hours ago! He continues to receive a constant dosage of nutrients until tomorrow. He is now attached to just one tube! Piece of cake!
Although we are not through with our visits to Medical City of Dallas, I do want to mention that we have received the most outstanding care we could have imagined. Drs. Weinthal and Goldman (Sam's Oncologists) and Dr. Whitney (Sam's GI specialist) have been fabulous and have gone to great lengths to explain to Tami and I what this process entails and to give us much reassurance. Also, we have to mention the great nurses that have taken such good care of Sam, specifically, Kammie, Tammy, Robin and Belinda. They treat Sam like one of their own, and both Tami and I are much at ease when they are around.
We continue to ask for your prayers as we move to the next stage. We ask that Sam avoids infections. We also ask that you pray for the countless other children at this hospital and those around the world. We are the lucky ones who have such a strong network of family and friends. Many of those here are not as lucky. The Lord Jesus Christ gives us strength, you give us strength, Sam gives us strength, and for me personally, my wonderful, beautiful wife gives me strength.
We'll talk to you soon,
Jonathan
Sunday, September 19, 2004 11:40 AM CDT
Good Sunday morning to all! What a week it has been. We have a lot to be thankful for on this Sunday.
Sam finished his third and final chemo treatment for cycle #1 yesterday! Sam, being his usual strong self, handled it great! Last night, though, he was a little irritated and got a little sick. But, considering that he's had 3 days of chemo, that is still very good. The nurses had a difficult time drawing blood out of his Port-A-Cath early this morning due to some clotting in the line. However, with some solution, in a couple of hours the clot was eliminated and they were able to draw blood.
The doctor continues to remain very encouraged by how well Sam is handling this. Because he has received nutrients for most of the week, Sam is actually healthier now even with chemo than before he entered the hospital. Each day, they are reducing the amount of pain medication he is receiving. If Sam continues his progress, we hope to leave for home in the next few days!
More test results should be received later this week. From what I understand, many of the results will determine if this will be a 4 cycle process or 8 cycle process.
The next couple of days, we will be trained on how to give Sam a daily shot. This is to help prevent his blood cell counts from dropping too low. Once we get home, Sam will be entering the critical part of the recovery process. His blood counts will drop as the chemo is taking affect, and he will be at his highest risk point in terms of infections. I can assure you, Tami will have have the house wrapped in bubble wrap to protect him! Because of this, Sam's interaction with people will be very limited, especically next week. We will also be very careful so that we don't get sick as well.
We continue to draw strength from everyone around us; those who have sent emails, cards, letters; and all the prayers. They are getting us through this!
Please continue to pray that Sam's medications work, that no additional treatments beyond the 4 will be necessary, that his happy disposition continues, and Tami and I remain strong.
Thank you all and have a great day!
Jonathan
Friday, September 17, 2004 10:33 PM CDT
I know that many of you are going to Chili's on Monday, Sept. 20th is support of Brinker's program for children's cancer research. Below is a link for the specifics for anyone who is interested.
http://www.shareholder.com/brinker/releasedetail.cfm?ReleaseID=143221
Friday, September 17, 2004 3:37 PM CDT
I wanted to give everyone a follow-up since our last message. As you can obviously see, we are now utilizing a web page (Thanks to Taylor White for this link!).
Chemotherapy was originally scheduled for Wednesday; however, the doctor wanted to delay this for a day to continue beefing Sam up for the rigors of this treatment. He received numerous IVs of nutrients, fluids, pain medication, etc. In fact, the nickname for the nutrients IV is "Steak-in-a-bag"! To make this go as quickly as possible, another IV was placed, this time in Sam's head. Although there was some screaming intially, Sam is tough. Now he doesn't even notice it.
Late Thursday afternoon, Sam received his first day of chemo. He received two different medicines over three hours. The boy is tough. He was actually laughing and playing during the treatment! Seeing this makes mommy and daddy breathe a little easier. We were advised that Sam may become sick to his stomach and may vomit Thursday night. Although Sam and we were up quite a bit throughout the night, he did very well!
The doctors have discussed with us some changes we will have to make. For instance, Sam's red blood and white blood cell counts will drop quite a bit over the next 7-10 days (I should have paid more attention to 10th grade biology class). Beginning late next week, we will have to be extra cautious about ensuring Sam stays away from anyone who might be the least bit under the weather. Also, for the next several days, we will be having to change Sam's diapers more frequently and while wearing rubber gloves as the chemo moves through and out Sam's system.
Sam begins his second day of treatment this afternoon. He is to receive only one kind of medicine. One of our oncologists stated that Sam is doing very well and that we may be able to go home sometime next week while he begins his recovery period!
Tami, Sam, and I want to recognize so many people that have send words of encouragement and hope. Additionally, so many have volunteered to help out with anything that needs to be done that we are in total awe. We want to thank everyone!
Also, I have placed some pictures on this web page. Please feel free to view them to see big Sam in action.
YOUR thoughts and prayers are working! We could not make it through this without them! Please pray for Sam's continued good spirits, health, and happiness! Also, please pray for Sam's doctors to continue with the proper treatment plan! Lastly, please pray for all the other children at this hospital, as well as those everywhere, that they receive the same hope and love as we have received from you!
Talk to you soon,
Jonathan, Tami, and Sam
Tuesday, September 14th, 7:45pm
First of all, Sam, Tami, and I want to let you know how much we appreciate and how touched we are from the outpouring of support from you and all those we don't even know! It is truly overwhelming and is so inspiring to us! Thank you all!
Monday night was a rough night for Sam. He had difficulty sleeping because of the discomfort from the surgery and the pain medication. Also, the doctors have been concerned that the tumor is putting stress on Sam's body as well. A blood test was done early Tuesday morning that revealed Sam's blood count was very low. You could tell he was not himself. He was irritable, weak, and very pale. A blood transfusion occurred mid-morning. We were fortunate to move to a larger room that had its own ventilation system to help prevent the transmission of germs from the rest of the hospital floor.
What a difference the blood transfusion made! It was no time that he perked up! The doctor told us that a transfusion is not uncommon due to the surgery, the amount of times he's had blood drawn, and the fact that the tumor is probably inhibiting his ability to produce blood.
One of our Oncologists met with us with a significant surprise. The bone marrow biopsy came back clean!! THAT was a HUGE sigh of relief! Based on the pathology tests performed yesterday, they were prepared to make a diagnosis even though other tests were still being performed, which will help refine the steps to be taken to fix our big boy. Based on consistent results, they have diagnosed Sam with having a Stage 3 Neuroblastoma in the Intermediate Risk category. This is what we were hoping for!
What this means is that he has a much higher chance of full recovery (as much as an 80-95% chance!). They are now ready to begin the treatment process earlier than expected which is necessary because this tumor is so massive they do not want it to continue to grow and become more dangerous.
Sam is scheduled to start chemotherapy treatments tomorrow afternoon. Our Oncologist spent a lot of time with us today explaining Sam's situation in great detail and the steps that have been outlined. Initially, he is to receive 4 cycles of chemotherapy in an attempt to shrink the tumor. If that is successful, they would remove the remaining amount of tumor via surgery. As I mentioned yesterday, surgery is not an option initially. The tumor is so massive that it is around major blood vessels, nerves, and organs. This would be too risky. If the chemo has not progressed as hoped, Sam will endure another 4 cycles of chemo. In terms of time, we are estimated anywhere from 3 months to 9 months at this point. That is ok with us! We just want our boy fixed!
Our Oncologist also let us know that the road is going to continue to be long and hard. Sam will continue to have his ups and downs. We realize this, and we are preparing ourselves for it. Even though there is a high chance of success, statistics don't mean a thing when it's your baby. As I noted earlier, as more results come back from across the country, the process may be refined to meet Sam's specific situation.
Tonight, Sam was amazing! That kid was laughing, smiling, and he was just clinging in Tami's arms. I couldn't believe it!
We take another big step tomorrow. I cannot reiterate how amazingly powerful everyone's thoughts and prayers have been! They have made this happen! Please focus on these: That Sam reacts to the chemotherapy in a positive manner and does not get sick! That the doctors have made the correct diagnosis and plan of action! That Tami continues to tolerate ME!
Thanks again to everyone of you and we'll continue to keep you posted.
Jon
Monday, September 13th 7:15pm
I wanted to give you all the latest update we have on our boy. First of all, he is one strong kid! He endured having three procedures performed by two surgeons: a port placed in his chest to draw blood and administer medicine instead of utilizing an IV; a biopsy on the tumor; and a biopsy of his bone marrow.
These procedures lasted about 3 hours and he is resting in his room. He is obviously going to be sore for a while and he is on morphine. He is mostly sleeping, which is the best thing he could do.
The initial look at the tumor is that it is massive. Far too large to remove with just a surgery. The surgeon stated that the tumor is "well differentiated", from which I understand is a good thing. If it was not well differentiated, that would mean that the tumor is aggresive. So we are happy about this! Many more tests must be done on this tumor to understand the stage it is in, how advanced it is, etc. This will lead to the correct diagnosis and procedures to follow. The samples have been sent to Boston's Children's Hospital for detailed anaylsis, a leader in this field. We should have more answers on this in 4-5 days.
The bone marrow biopsy also went well. Initially, no tumors have been found; however, there are some cells which could not be distinguished at first. This has been sent to the pathology dept. for in-depth analysis. We are told that we should hear more results on this tomorrow.
We've asked the question on everyone's mind "Why can't they just take it out? When will they start this?" Because everyone is different, and these tumors are different, they must know as much information about this as possible in order to properly lay out the specific doses of medication, etc. It is highly probable that Sam will have a series of chemotherapy treatments as well as surgery(ies).
As you can see, this is very up and down. It's amazing to see how great Sam has been. Tami has been absolutely incredible and you can see the true bond between her and Sam.
Everyone asks "What can we do?" Here is the only thing we ask: Keep your thoughts and prayers coming!!! They are working! Here's what to focus on for now: That Sam's bone marrow is completely clean and free! That the tumor is non-aggressive! That Sam remains strong and the soreness he may feel from today's surgery will be gone! That Tami and I remain strong and supportive!
We'll keep you posted!
Please pass this along to anyone I may have accidentally left off.
Jonathan
Saturday, September 11 5pm
I wanted to give everyone an update on our little Sam. We met with a Family Therapist yesterday who told us to expect a rollercoaster ride of highs and lows. How very true this is. Here is the latest as of Saturday afternoon:
Friday afternoon, Sam received a CT scan and an upper GI after a sonogram revealed a growth near his liver. The upper GI came back clean; however, the CT scan revealed our worst fears: a tumor that is situated on his adrenal glands and possibly another tumor on the right side of his heart. The initial diagnosis has been noted as neuroblastoma, a cancer that is found in babies and tends to start at the adrenal glands and, depending on the stage, will spread from there. You can find out more of this type of cancer at www.webmd.com. We met with our Oncologist Friday evening, and he noted that more tests need to be performed to determine the stage, type, aggressiveness of this form of cancer.
On Saturday, a bone scan was performed to determine if the bones were being attacked as well. A brain MRI was also performed to determine if the tumor had spread to his brain. With the swelling of his eyes, this was a large fear of ours. We finally had some good news! Both the brain MRI and bone scan came back clean! We also found out that instead of having two separate tumors, it appears that it is one giant tumor that spreads across both adrenal glands and up towards the heart. Although this sounds horrible, this is the better of the two situations. This indicates that the tumor may not have moved on from its original point, but rather has just grown larger. Additionally, this may also indicate that it is not aggressively attacking Sam's organs, but rather just pushing on them. If this is the type of tumor we hope, then the prognosis is very good.
What happens next: Sam is scheduled for a day of rest on Sunday. On Monday, he is to receive a biopsy on the tumor, which they will have make an inscision. Also, they will perform a bone marrow biopsy. These will help determine the correct diagnosis, type of tumor, aggressiveness, etc. in order to perform the next steps. This procedure, specifically the bone marrow biopsy, will make for a hard day for Sam. We should expect results from these procedures by Wednesday or Thursday.
Thanks to everyone for the kind thoughts and prayers. We ask for you to keep them coming! God is giving us the strength to get through this. Sam has been incredible, and keeps all of us smiling. Tami keeps me strong and is the perfect mother.
We will keep you posted.
Jonathan
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