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.

Counting Each Blessing

Jayson is not yet ready to begin his blog, so for now either Uncle Jerry or I (Jayson's mom) will be posting the updates on his progress. 

During this difficult time, it's hard to think about our blessings. But it's more important during these times that we list each blessing that comes our way. Whether it's big or small, we will count them all.

1) We are blessed to have our God. He has not abandoned us. He is walking with us on this journey and He knows what we need. He is the one who is keeping us strong and hopeful. He is a merciful and loving God.

2) We are blessed to have a strong, active and prayerful support group. We are hearing from many family, friends, co-workers and classmates from around the world who are praying for Jayson and our family.


3) We are blessed that we are here in San Diego when Jayson's illness was diagnosed. Many of you may have known that we had just moved from Oahu, Hawaii this past April. Although I know our friends in Hawaii would take care of us. I can't imagine having to go through this so far from our family in San Diego.

4) We are blessed for the pancreatitis that brought us to the emergency. Because of it, tests and screenings were done to determine the cause of his stomach pains. It was in these tests and screening that the doctors saw some of the abnormalities in Jayson's body that later required further screening which lead to his cancer diagnosis.

5) We are blessed that the cancer that Jayson has is not as rare as the one the doctors feared.  Yesterday (Friday, Dec 16th) I brought Jayson in for his follow-up appointment with his oncologist. She gave him a physical exam and we discussed the pathologist's final report and diagnosis. Jayson was diagnosed with Alveolar rhabdomyosarcoma. It is a form of sarcoma cancer that arises from cells that normally develop into muscle cells. It is more commonly seen in adolescents and often occurs in the arms and legs. Although this cancer is still rare (400-500 cases/year in the U.S.), it is more common than the other type they thought it was which had 200-300 cases/year in the U.S.

6) We are blessed that the skin nodules on his chest and back have gotten smaller after the first round of chemotherapy. These skin nodules have cancer cells in them according to the results of a skin nodule biopsy done on December 6th. We are thankful that there are signs that the chemotherapy has started to help.

7) We are blessed to have Jayson's friends who keeps him smiling, laughing and his spirit high. I took him to school yesterday to visit his friends and classmates. I was so touched when they gave him a standing ovation and encouragement. He's received many visits from friends who came just to talk and hang out. We welcome more visits from friends, but we ask that arrangements be made beforehand to make sure Jayson is feeling well enough to receive visitors.


I'm sure there are more blessings that I haven't thought of or mentioned, but we will be thankful for each one of them as they come to mind.


As my brother mentioned in the last blog, we are taking Jayson to the Sarcoma Center at UCLA on Monday morning to get a second opinion. We will be driving to Jerry's house on Sunday afternoon so that Jayson can spend some time with his little cousins and other relatives in the area.


As for today, it looks like a quiet weekend. Jayson didn't get much sleep last night, so, he'll probably sleep alot during the day.  Besides going to church this evening, we will probably go to a Red Lobster restaurant for lunch. Jayson's been craving for Red Lobster's shrimp food since he was admitted in the hospital and was put on a No Food/No Water Diet  for 2 days in order to treat his pancreatitis.  He was just being hydrated with liquid through his IV.  He told me during the second day that when he was dreaming of the fried shrimp from Red Lobster, he could almost taste it.  Now, he doesn't have to imagine it.  I'm sure he'll be savoring each and every bite.

Thank you again for all your thoughts and prayers. Our family will continue to be positive, hopeful and thankful for our blessings. 

Home at Last

Uncle Jerry here giving everyone an update.  Jayson is finally home and doing well.  First round of chemo completed and so far he is faring pretty well.  He has had a few expected side effects but appears to be handling things OK.  I have been bugging him to get going on this blog so hopefully soon you will be hearing stright from him.  He has been moved to the downstairs bedroom for accessibilty and mobility. 

During chemotherapy, his immune system is compromised so we are being diligent with keeping his area clean and sanitized.  Since he is home now, I am sure that people will start wanting to visit.  If you are sick and or starting to feel sick, whether it be a cough, cold or flu, please come another day.  I know that you mean well but any visitor that has any cough/cold/flu symptoms should not visit.  You will have to come at another time.  Hand saniztizers are located throughout the home so please make sure you sanitize prior to making contact with Jayson.  Also, when you do visit, let the family know prior to coming over.  We will let you know when would be the best time for Jayson.  He is not always aware of when his medications are due so please get in contact with us/or Jayson and we will make the necessary arrangements.  Please pass this blog to other family and friends so that they understand the situation.

Monday will be an important day us all.  We will be seen by the Sarcoma Center at UCLA.  We are appreciative that we were able to be seen on such short notice.  They will be conducting their own evaluation, prepare their own diagnosis and their own recommendations for treatment.  This will hopefully give us more information and more options so that we ca do what is best for Jayson.

Your continued prayers and support is very much appreciated.

Regards,
Uncle Jerry 

From The Mother's Perspective

My name is Jessie Colada Adams and I'm Jayson's mom. I've been by Jayson side since the beginning of this journey and I think only another mother in the same situation can know exactly how I'm feeling. When I was first told that Jayson had cancer, my heart just sank.  Images of what my family went through when my sister, Joanna, was battling breast cancer flooded my mind and I kept thinking "not again...this can't be happening". This was not real.  I couldn't concentrate on what his doctor was telling me after I heard that devastating word. I remember crying, shaking my head, feeling numb and alone.  But I know I'm not alone. My family and I are very blessed to have many family and friends around the world praying for Jayson and giving us love and support. We are eternally grateful for that blessing.

As I write this, Jayson is sleeping. We are still in the hospital and he is at the end of his first session of chemotherapy. Even though this is only the first session of chemotherapy, we are beginning to see some of the early side effects of the treatment. This morning he started feeling a little nauseous and dizzy, so we'll be keeping an even closer eye on him. After chemotherapy is completed this evening, he will undergo a blood transfusion to elevate the level of hemoglobin.  He will probably be discharged sometime tomorrow if all goes well today.

I am amaze at how Jayson is handling all this.  He has never complained about all the tests and procedures that he has undergone. His attitude remains positive despite being uncertain of what the future holds.  He continues to keep smiling while knowing the difficult challenges that lie ahead. The other day, he told me he feels so spoiled by all the attention that he's been getting. I told him he wasn't being spoiled, rather, he was being loved.

I look at him differently now.  He's not just my baby boy anymore that I need to nag to get his homework done.  He's no longer just a teen that spends too much time on facebook and video games. Of course he still enjoys these things, but in my eyes, he has transformed this past week into a courageous teen with strength and a different perspective on life.

The other day I read a quote on Jayson’s facebook noted by a friend that said “don’t think of the darkness in the tunnel, think of the light at the end of that tunnel”.  The quote reminded me on what I should focus on. Right now, I do feel I'm in the dark and I don't know what's ahead.  But instead of dwelling on this, I needed to focus on the light at the end of the tunnel when Jayson overcomes this disease and becomes a living testimony of God’s love, power and mercy.

Thank you all for your prayers, love and support.  I know that this journey will be difficult and long.  I also know that there will be moments of success as well as disappointments.  We hope that you continue to walk with Jayson on this journey. God bless you all.

The Beginning

My name is Jerrico Colada, Jayson Colada Adam's favorite (and only) Uncle from his mom's side.  I have been speaking with Jayson regarding starting a blog to help him battle through his disease.   It allows him to communicate with the many classmates, friends and family who wish for his improved health.  Though I am creating the first post, this blog will be kept by Jayson from here on out.

As many of you are aware, Jayson started treatment on Saturday, December 10 and so far he is doing well.  He constantly has a stream of visitors throughout the day.  Even at night, a family member stays with him (usually his mom) so he is literally never alone.

To say that Jayson is special is an understatement.  In the eyes of my two sons, Jayson has achieved rockstar status.  They follow his every lead and believe his every word.  It is a wonder that Jayson does not take advantage of this power more than he does.  His courageous spirit, laid back style and infectious smile makes my day.  I am so looking forward to reading these posts and to be continued to be inspired by my little nephew.   

Jayson has a huge challenge ahead of him.  The difficulties in front of him are to me unfathomable.  We all have difficulties in life, obstacles that we must overcome but few greater than that confronting Jayson.  I invite all of you in your own way to find something about your life that you have the ability to change and commit to it now.  Whether it be writing that great novel, becoming a healthier individual, improving relationships with people, improving your relationship with God, whatever you decide.  Think about it then commit to it.  Set your goal, write all of the sacrifices that you have to make to achieve that goal and then resolve each day to make those sacrifices.  I am certain that soon you too will find yourself inspired by my little nephew and then each of us, in our own way, will have our "walk with jayson".