First Evaluation Results

            As I mentioned in our last blog, Jayson was going to be evaluated two weeks ago to determine if the treatment plan was working.  He had a bone marrow biopsy done on March 13^th and a PET scan done on March 14^th. We are so happy to share that the results were better than what we were expecting.  Although two of the bone marrow biopsy sample slides did indicate the presence of some cancer cells, there were other samples that didn’t have cancer cells.  As for the PET scan, any areas that had cancer would glow.  On Jayson’s results there were NO areas that glowed!  Based on this favorable PET scan result, Dr. McManaman did not feel it was necessary or beneficial to do the CT scan and therefore canceled Jayson’s appointment for it.  Even though he’s not in remission yet, we celebrate this blessing and he'll continue with his treatment plan as scheduled.  We are so thankful for Jayson’s improvement and are optimisitic about the next evaluation in June.

Soon after this first evaluation, Jayson began a new part of his treatment plan.  Jayson’s chemo is being done as an outpatient until the end of April.  He has chemo either once a week or 5 times a week.  Each chemo takes less than 2 hours to administer.  This part of his treatment includes a new chemo med which comes with its own set of common side effects.  Fortunately, the only side-effects that Jayson has experienced are jaw pains and diarrhea. These are both easily treated with Tylenol and Immodium. Other than these side-effects, Jayson has been doing well.

He is definitely happy about not having to stay in the hospital every two weeks.  His spirit is still good and he’s eating well.  He was able to enjoy our trips to Disneyland and Legoland this past week and is looking forward to spring break next week.  For now, he’s enjoying the company of our friends visiting from Colorado, the Howell family.  We met them while we were living in Hawaii and their youngest son, Phillip, was Jayson’s classmate in elementary.  We’ve been able to give them a tour around San Diego and fortunately Jayson only had to go to the hospital on Monday for chemo.

We continue to be  grateful for everyone’s prayers and support.  We see the powers of your prayers working in Jayson and in our family.  Thank you for keeping Jayson and our family in your thoughts.  As always, we will continue to keep you updated with Jayson’s condition. God bless you all.

First Evaluation Scheduled

Jayson will be going through a series of tests this week to find out if the chemo treatment has help reduce the cancer in his body. He is scheduled to have a bone marrow biopsy on Tuesday, March 13th, a PET scan on Wednesday, March 14th and a chest CT scan on Friday, March 16th.   As I mentioned in our last posting, the skin nodules on his back and chest are visibly gone and we are hopeful that the tests will confirm this.

As for now, Jayson is doing well.  He continues to have a good appetite. In fact, he's regained most of the weight he lost since December.

He completed his 6th round of chemo on Saturday, March 3rd, after being at the hospital for 6 days.  He was alot more tired during this last round of chemo and slept a minimum of 12 hours a day.  Thankfully, there were no other new or significant side effects this time around, just slight nausea.   After being discharged, his energy level was low.  So, the following Monday, I brought him in again to the hospital to get a blood transfusion.  Soon after that, his energy level increased and he had more color on his face.  In fact, he was able to play soccer with Keilani later that day.

This increase in his energy has help him to get back on track with school work. So far, he's doing fine.  He's been in the home school program since January and the Poway school district has provided a tutor for him.  He gets his weekly assignments from his teachers who have been very supportive.   We are encouraging him to get as much of his school work done so he walk with his class at their graduation ceremony this coming June.  Any words of encouragement you can send his way would be welcomed and greatly appreciated.

Thank you once again for all your prayers and support.  We may not be able to talk to each one of you on a regular basis, but we feel and see your prayers at work.  Our family is doing well and I know our strength is coming from God and your prayers. We will continue to keep you all updated with Jayson's condition.  Hopefully, we'll be sharing some good news once we receive the results of his tests.  God bless you all.   

Chemo Round #5 Completed!

            Jayson completed his 5^th round of chemo last Thursday, Feb. 16^th.  I brought him in the hospital on Monday morning, Feb. 13^th and were there for 3 days.

Jayson did better with the chemo this time around.  He didn’t feel as much nausea or body ache as in previous sessions.  He was just tired a lot and spent a lot of time sleeping.  He has a good appetite and has gained most of the weight he lost during the first month.  He’s back to 110 lbs and so we’re happy about that.  His spirit is still good and his positive attitude makes it easier for us to deal with his situation.

We have seen two main improvements in Jayson.  First of all, the skin nodules on his chest and back have almost disappeared completely.  When they were first noticed, there were about 10 lumps total on his chest and back that were easily visible.  Now, after about 2.5 months, Dr. McManaman can only find 1 on his back and 1 on his chest.  Neither of the 2 lumps can be seen.  In fact, Dr. McManaman has to use her fingertips to search for them.  Also, these 2 remaining lumps have shrunk from their original sizes.  Secondly, there‘s evidence that his bone marrow is producing more platelets on its own.  Dr. McManaman is excited to see what next month’s bone marrow biopsy and PET scan will show.  We’re hopeful that the chemo treatment is working.

 Jayson’s next chemo is scheduled for Feb. 27^th, unfortunately, he had to taken back to the hospital late last night because he had a fever of 101.3.  Both Keilani and I have been sick the past few days and even though we’ve kept our distance from Jayson as much as possible, he still got sick.  He was given an antibiotic injection and came home early this morning.  He’ll be returning to the hospital later this evening to get another antibiotic shot and undergo a blood transfusion to increase his red blood cells.  He’ll be staying at the hospital overnight and should be back home sometime tomorrow.

 Thank you once again for your support and prayers.  We ask that you continue to pray for Jayson and join us in giving thanks for the progress he's already made.    God bless you all.

Happy New Year!

I know it’s been 2 weeks since our last blog and I apologize for not being able to update you these past two weeks.  I know there are many people who check Jayson’s blog regularly to see how he's doing and we appreciate everyone’s concerns.  Unfortunately, the last 2 weeks have been very busy.

As mentioned in the last blog, Jayson was in in the middle of his 2^nd round of chemotherapy when we said “good-bye” to 2011 and “hello” to 2102.  Unfortunately, our family was not all together to welcome the new year.  Jayson welcomed 2012 quietly with his dad in the hospital, while the rest of the family was at home.  However, we did get together later that day.

Jayson was discharged from the hospital on the evening of January 2.  We then tried to get into some normal routine that week.  I tried to spend some time with our other kids, especially, our youngest, Keilani.  I accompanied her to her ballet/tap class, volunteered at her pre-school and took her several times to the library.  During this week, we also watched the “Mr. Bayanihan” male pageant hosted by Kristen’s high school Bayanihan club to help raise money for flood victims in the Philippines.   Kristen was one of the students in charge of the show and had been busy preparing for it since early December.  She was also one of the MC (Master of Ceremony) for the show and she did a great job. We are so proud of her for overcoming her nerves.  It was rewarding to see how her hard work and long hours paid off with a successful pageant.

The following week, Jayson was scheduled to begin his 3^rd round of chemo on January 11^th, but his platelet number was too low, so chemo was rescheduled for today, January 15^th.  The second week was spent taking care of our normal routines as well as planning and preparing for Jayson’s birthday party.  Due to the uncertainty of Jayson’s actual chemo treatment, planning for his birthday party was almost last minute.  Luckily, we had many family & friends who helped us with it. 

Jayson turned 14 yesterday, January 14^th. We celebrated with a party for him at Hilltop Community Park near our home.  It was a beautiful day and the view from the hilltop was amazing despite some overcast.  Jayson enjoyed his favorite salted pepper chicken wings, chocolate cake and fresh air, but more importantly, he had a great time just hanging out and laughing with family and friends.  We had many family members who traveled down from the L.A. area to join us.  It was great to be able to thank people in person for their prayers and support.  I wish we were able to invite more people and celebrate longer. However, Jayson had chemo scheduled the following morning and we didn’t want him to get too tired or overwhelmed by the attention.  For those who weren’t able to come, I’m sure there will be more opportunities to visit Jayson.  Jayson was tired when the party ended in the mid-afternoon, but the smile on his face and his gratitude told us he had a great day.  

Today, my dad and I brought Jayson in to NMCSD 8 in the morning.  His vitals were checked and blood was drawn. The results of the blood work indicated his body was ready for chemo.  He was given fluids through his IV for 6 hours to keep him hydrated. Right now, he will be given anti-nausea medications.  Once this is completed, they will begin his chemo medications.  He’s spent most of today resting or sleeping and I expect it to be a quiet day. We’ll be here 2-3 days and we hope that the common side effects of his chemo meds will continue to be mild.  

Thank you once again for your thoughts, prayers and warm wishes for Jayson and our family.  Not a day goes by that we aren’t grateful for all the support and blessings we receive.  Happy New Year to all!

Home for Christmas

After being discharged from the hospital last Thursday, December 22^nd, Jayson was able to spend a few days at home before his second round of chemotherapy.  Friday, December 23^rd was spent at home just relaxing.  Saturday, December 24^th was another quiet day.  We just went to church at 6:30 p.m. for the Christmas Eve mass, had dinner then opened a few Christmas gifts.

Christmas Day was a busy one.  My brother and his family were hosting our family Christmas party this year.  So, we loaded our recently purchased RV for its first road trip and left for Rancho Cucamonga at 9:00 a.m.  The gathering was set for lunch time, but it lasted until late evening.  Of course, there were lots of food, family & friends, gifts and fun.  Cousins played Xbox games and competed in the “Dance Central” games.  Despite having to wear a mask to protect himself, Jayson was able to enjoy the day.  He was one of the winners when we played “bingo”.  We left Jerry’s around 7:30 p.m. and were home by 9:30 p.m.

For most of the weekend, Jayson did not have too many side effects to deal with.  The only side effect he had to deal with was hair loss.  His doctor had noticed some hair on his pillow on Thursday (December 22^nd) morning before he was discharged.  Every day when he woke up his pillow was scattered with hair.  When he combed his hair with his fingers, there was usually hair on his hands.  When he showered, the shower floor had more hair.  Slowly his head full of hair began thinning out.  We were hoping to avoid shaving his head until after Christmas so that our Christmas pictures would still show him with hair.  Luckily, we got our wish.  We didn’t have to shave his hair until December 26^th.

On Monday (December 26^th) morning, Henry (Jayson’s dad), Jayson and I headed to Naval Medical Center San Diego (NMCSD) for his 2^nd round of chemo.  His vitals were taken and blood was drawn.  The blood work results indicated that his platelets level was at 62, not at the level of 75 needed to begin chemo.  So, his doctor told us to come back in a few days to try again.  That night, we decided to go ahead and shave Jayson’s hair.  We thought of giving him a Mohawk style haircut, but his hair would not cooperate, so we just went ahead and shaved it off.  Kristen took before and after pictures of Jayson and recorded his haircut on video.  To show Jayson his support, my dad also shaved his head.  While Henry was shaving dad’s hair, mom came down to see the final trimming.  Kristen took pictures of Jayson, Henry and dad with their new hairdos.

On Wednesday morning, December 27^th, Henry & I again took Jayson to the NMCSD for his second round of chemo.  This time, his platelet count was at 82, so Jayson was able to begin his next round of chemo.  This session will be for 5 days, so looks like we’ll be celebrating New Year’s Day here in the hospital.  This is just a small sacrifice our family is willing to make to help Jayson battle this disease.  This New Year’s Day will definitely be one that we’ll always remember.
We still haven’t heard back from Dr. Federman, the oncologist at UCLA’s Sarcoma Center who was supposed to get back to us with their final finding on Jayson’s biopsy samples and scans.  Hopefully, we’ll be hearing from him soon.  In the meantime, we will continue with the treatment plan we have.

On behalf of our family, we again say “thank you” for all your warm wishes, prayers and support.  We wish everyone a blessed new year.

First Setback

At about 2:30 a.m. on Tuesday morning, December 20^th, my dad woke me up to let me know that Jayson seems to be a little warm.  So, I went to Jayson’s room and checked his temperature.  My dad was right.  Jayson had a mild fever of 100.5°.  Since a fever was the first sign of a possible infection, I called the NMCSD Pediatrics to tell them about Jayson’s fever and I was told to bring him in.  My dad took us and Jayson was again admitted to NMCSD at 3:30 a.m.

His vitals were quickly checked while I completed the admission paperwork.  Blood was then drawn to check his red and white blood counts and platelet levels. Blood cultures were made to check for growth of bacteria and a chest x-ray was done to make sure he didn’t have pneumonia.  Needless to say, Jayson and I didn’t get much sleep that morning.  Doctors and nurses were in and out of the room to check on him and to get more information.  I told them that prior to this mild fever, he didn’t have any other new symptoms.  They didn’t think he had an infection after the first day, but they needed to wait until the result of the blood cultures were in, which we expected to be on Thursday morning.

Each day when the doctors made their rounds, they updated me on Jayson’s white blood count, hemoglobin and platelets level.  Each of these had to be at a certain level before Jayson could be discharged.  So, while we waited for the results of the blood culture, we remained in the hospital.  I would just go home after lunch to shower and get items we needed for the following day.  

Jayson and I were able to catch up on our sleep Monday night.  So, on Tuesday morning he had more energy and a bigger appetite.  He’s kept himself busy during his stay here.  He’s been listening to music and playing games on his IPod.  He’s been keeping in contact with family and friends via Facebook.  He’s also watching TV and talking with his visitors.

Right now it’s past 8:30 a.m. on Thursday, December 22.  Jayson’s still sleeping.  He had a bloody nose around 4:30 a.m. this morning and a slight fever of 100.3°.   One of the resident doctors updated me on the result of Jayson’s latest blood work and all the numbers look good.  He also mentioned that the blood culture was negative of any bacteria. The doctors will be making their rounds between 9:00-10:00 a.m. and unless something comes up within the next 1-2 hours, I expect them to tell us that Jayson can go home today.

This mild setback just reminds me of how important it is for us to use proper hygiene when we’re around Jayson.  We need to make sure that everyone in our household and visitors are diligent about using hand sanitizers before making contact with him.  We hope there won’t be another unscheduled trip back to the hospital, especially during Christmas.

On behalf of our family, we want to wish you all a very Merry Christmas and a blessed New Year.  May we always remember that the reason for this season is Jesus Christ.  Let us celebrate his birth as we open gifts, share meals and enjoy the time with our family and friends.  Thank you once again for all your thoughts and prayers.  We will continue to keep you updated on Jayson’s progress.  God bless us all.  

Second Opinon

At 5:40 a.m. on Monday, December 19, 2011, my brother & I took Jayson to UCLA’s Sarcoma Center to get a second opinion on Jayson’s diagnosis and treatment plan. It took us over 1.5 hours to get there due to normal Los Angeles morning traffic, but we made it in time for our 8:00 a.m. appointment.  We brought with us all the biopsy samples slides, scans (MRI, PET scan, Ultra-sound), X-rays, test results and reports for Jayson’s case and provided it to Dr. Noah Federman, an oncologist at the Sarcoma Center.

After giving Dr. Federman Jayson’s health history for the last few months, he was given a physical exam.  Dr. Federman also reviewed the results from a chromosome test done. After reviewing all of this, along with the reports from a Naval Medical Center San Diego’s (NMCSD) pathologist and radiologists,  Dr. Federman has preliminary confirmed the diagnosis of Jayson’s NMCSD’s oncologist, Dr. McManaman.  He also agreed with the treatment plan she had for him.  He was very confident and impressed with how Dr. McManaman has handled Jayson’s case and he offered any future assistance we needed.  Dr. Federman was still going to have their own pathologist look at all the biopsy slides and have one of their radiologist review all the x-rays, MRI, Ultra-sound and PET scan to make sure nothing was missed.  In addition to this, additional chest x-rays were done to get more information on the bone deformity on Jayson’s chest to see if perhaps this is the primary source of the cancer.  Once they have a complete picture, he will review Jayson’s case and present it to the Sarcoma’s Center Tumor Board that will meet on Thursday evening, December 22.  According to Dr. Federman, they should have a final report for us Friday morning, December 23.

We left the Sarcoma Center with some peace of mind knowing that everything was being handled perfectly and treatment was the latest and most effective way of handling aveolar rhabdomyosarcoma.   Jayson’s initial treatment plan has been fine-tuned after the final diagnosis was made. Instead of undergoing chemotherapy about every 3 weeks, it will be every 2 weeks.  Of course, this still depends on how Jayson’s body recovers from each chemo session.  Prior to each chemo session, blood work will be done to make sure his body is ready for chemo.  His next chemo is scheduled for December 26^th and will last 5 days. So, we’ll be in the hospital right after Christmas and we hope to have him home in time to celebrate New Year’s Day.