Drive to Survive

Yesterday (Oct 4th) was a fairly quiet day for Jayson. He slept more than he did the previous day, but it wasn't a continuous deep sleep that we hoped for.  He basically took a lot of 1-2 hr. naps throughout the day and night. Even though he was given medications to help him sleep at night, I was told he was still restless at times.

Assisting His Nurses

Jayson was given a sponge bath mid-morning and was transferred to a recliner for about 3 hours. Most of his morning was spent on this recliner as his nurses continued to care for him.  He napped on and off during the entire time he was on the recliner. When he was returned to his bed, he was able to help the nurses a bit by using his own strength to maneuver himself once on the bed.

I had missed the morning meeting with the doctors yesterday, but his ICU doctor came by and updated me on what was discussed during the morning rounds. As of yesterday, his liver had improved slightly. It wasn't much, but it was in the right direction. So, some of the changes they have made maybe starting to take effect. They are still very concerned about his liver and kidneys. We pray that this improvement continues.

Jayson still had fluids in his lungs and the mass in one of his lungs has grown.  His doctors can insert a needle to this mass and drain it, but performing this procedure would be too risky. They would be inserting a foreign object into his body and without the white blood cells; his body wouldn't be able to fight any infections. Also, because of his body's inability to clot properly, there is the risk of internal bleeding. Aside from the potential problem this can cause, they don't want to put Jayson through another invasive procedure.

Jayson continues to run a fever and is given medication for it on a regular basis.  Each time his fever is at the higher end, we try to help reduce it by putting a cool wet wash cloth on his forehead and wiping parts of his body with a wash cloth as well. Jayson still eats and drink.  His favorite has been the Berry Smoothie, but he's also had apple sauce, macaroni & cheese and carrot juice.  We've had to use a thickening powder for the liquids to help him swallow it better because the thinner liquids have a tendency of going down the wrong way when he sips too much.  He then ends up coughing afterwards and this simple act takes too much energy out of him.

Card from Esther & Friends

The rest of the day was spent in bed.  He had some visitors, mainly family members who have come to see him, support us and bring us meals. We have added more cards and posters to his "We Love You Jayson" wall.  When Jayson is alert he can always look towards the wall and see the support he has. My sister also read some of the notes his friends and family have written on the banners and cards. I believe hearing these words of encouragement have given him more drive to survive.

Every day I ask Jayson if he still wants to fight these cancers and every day he has nodded. I then tell him we are with him and that we are going to do all we can to help him fight this disease. I will continue to believe that he understands what I am asking. I have also told him that if he ever gets to the point of being too tired to fight or has had enough, that he would let me know. I trust that he will.

His ICU doctor has told us that it's likely that as the days pass, Jayson may get more and more confused or will not be as alert or interactive as much. She encouraged us to talk to him as much as we can when he's awake and alert.  I have seen evidence of some confusion and he has a dazed look in his eyes, but I've also seen how alert he can be.  During this time, I would ask him the name of some people around his bed or tell him to look at a certain person and most of the time he's able to do it. He's also raised his hand and wave when I tell him he has a visitor.

Right now it's almost 9:00 in the morning, Saturday, Oct. 5th. We are expecting some members of his youth group here today to talk to him and sing to him once again. I know that hearing his friends' voices and seeing their faces will lift Jayson's spirit.  I know his heart will be jumping with joy and he'll be singing with them.

A Beautiful Day

Thank you for another day with Jayson. He was able to sleep more last night with the help of some medication, but according to my husband, he did wake up every few hours and was trying to get out bed. Henry had watched Jayson overnight along with his mom and sister, Carole. This allowed me to sleep earlier than usual and for the first time in almost a month, I slept for more than 6 hours. Thank you to our family and friends for helping take shifts in watching Jayson.  There's no way we could have done all of this on our own.

Ms. Lauren's special service.

We have received support and prayers from not just our family and friends, but from the hospital staff as well. Yesterday evening as I was trimming Jayson’s fingernails and toenails, his nurse, Lauren said she had a filer I could borrow.  She mentioned that sometimes she would file the nails of her male adult patients while they were sleeping.  So, I said she could do the honor of filing Jayson’s nails and she did so happily.  During this time, Lauren also talked to me about Jayson and what was happening to his body and what to expect.  I appreciated her sharing her honest yet compassionate professional opinion with me.  It was good to hear things from her perspective.  It helped eased some of the tension I was feeling at the time.  Lauren is just one example of the wonderful staff they have here at the NMCSD Pediatric ICU.  This experience has been a very positive one despite the reason that we're here. We know that they are all doing their best to help Jayson and our family.

  

We have seen how Jayson's positive attitude, internal strength, caring nature and simplicity make him so unique...so loved. He has received many cards, gifts and well-wishes from family, friends and classmates. We posted most of them on the wall in his hospital room.  Jayson hasn’t been able to read them yet, but we have. We are so touched by all the support that Jayson and our family has received.  Thank you for making this difficult time easier to handle.

Jayson's Biology Class last semester

Mrs. Draper's message..."You are loved"

Yesterday, Jayson was visited by many family members and a teacher from Westview. Mrs. Draper was Jayson's biology teacher last semester. She came by to visit him around noon time yesterday bringing snacks for our family, gifts for Jayson, well-wishes from the Westview and encouragement.  This was the first time we met Mrs. Draper in person and we are so touched by her compassion and caring heart. It was obvious that Jayson was not just another student to her. She shared some memories with us and gave us some insight on how he has touched her life. Hearing her kind words and seeing my son through someone else's eyes gives me an overwhelming sense of pride and joy. Mrs. Draper had sent me a picture of Jayson's biology class with a big sign they made. We have that poster and it's now hanging in Jayson's hospital room.

Banner from his Biology Class says it all...We Love Jayson!

Yesterday was another tough day for us, especially after the family meeting.  It was difficult trying to keep the tears away when we told other family members about what was discussed in the meeting. There was sadness in their eyes and the only thing we could do was just give each other hugs for comfort. Thank God we are able to draw from each other for strength and comfort.

Jayson's gift to his dad.

Henry & I each talked to Jayson after the family meeting. We don't know how much he heard or understood from the meeting, but we went ahead and explained what was discussed. Through the tears, Henry & I both told him how much we loved him and that we would be here for him. We were trying to comfort him, but it was Jayson who was doing the comforting. He gave each of us a hug and patted our back. I think it was his way of telling us it'll be okay, that he'll be okay. This simple hug is one gift that we will always remember and treasure. Thank you for giving us that gift Jayson.

As I finish this post, Jayson is lying in a recliner facing the window.  He's had some carrot juice, a teaspoon of macaroni and cheese and smoothie. He was able to take about an hour nap and now he's just resting with his bacon pillow.

He's lying with a view of the outside world. He can see the top of the NMCSD Chapel along with a tall tree on the side.  The sky is blue, the sun is out and there's a slight breeze. It’s a beautiful day. Any additional day we have with Jayson IS a beautiful day.

Praying For A Miracle

We just finished the weekly family meeting about an hour ago and it was another difficult and emotional time. These meetings always seem to bring out my tears and this meeting was no different. We met in Jayson's room this time around instead of the staff lounge.  It was important to have Jayson be included in the meeting especially since he was awake.  Present in the meeting and forming a circle were Jayson's medical team, our social worker, Jayson, Henry & I. Also in the room, sitting at the far end corner, next to the window were Grandma Del, Grandma Lucy & Grandma Ester. I sat next to Jayson's bed, holding Jayson's left hand and Henry was to my left. I always dread these meetings, but it was very important for all of us to meet regularly to make sure we were all on the same page and that our wishes were clear to Jayson's medical team.

I remember taking a deep breath as the meeting began and bracing myself. As Jayson's ICU doctor began to speak, I already sensed something was different today. Call it a hunch or mother's intuition, but whatever it was, I dreaded this meeting even more. I soon learned why.

We learned that Jayson's liver has gotten worst from the previous day. His liver is now worse than it has ever been despite some of the changes that were made yesterday to prevent it from getting worse.  His doctors believe the deterioration of his liver is due to cancer. They are also seeing that his kidney is starting to fail once more. Again, this is most likely due to the cancers in his body. The chest x-ray from this morning indicates that the mass in his lower lung has grown and there is still fluid in his lungs. As I've indicated before, fluid in his lungs can cause Jayson to have respiratory problems. Jayson may eventually need to use a BiPap mask once again to help him breathe.

As we've experienced these past 3.5 weeks, Jayson's condition can change so drastically from one minute to the next. Prior to today, the doctors' goal was try to get Jayson well enough to go home. But, today, they don't think this is possible. They can't predict how much time Jayson still has with us. The doctors' goal has now shifted to comfort care.  They will try to keep him as comfortable and pain-free as possible. We want to minimize any suffering Jayson may endure.

We have to look and see if what we're doing for Jayson is actually helping him or just prolonging the inevitable. His ICU doctor gave us some recommendations as to what medications and procedures can be stopped and what should be continued. But the final decisions as to what changes to make will be up to Henry & I. They said they will be able to give us their opinions and guidelines to help us make an informative decision. They will also honor and follow our instructions and wishes. However, the difficult part for Henry & I is to decide on what these instructions and wishes are.

Please join us as we pray and contemplate on the decisions Henry & I need to make. Please pray that God guides us in making the right decisions. Also pray that they will be decisions that we both agree on and are in peace with.

At this point, there's nothing else that Jayson's doctors can due to cure him. It's all up to our Universal Physician, our Heavenly Father, our Savior and our Healer. We have lifted Jayson up to Him in the very beginning, and now we wait for His answer. Please pray for a miracle for Jayson!

A Taste of His Normal Life

It was a busy day for Jayson. He was awake and alert most of the day as he received visits from family members and hospital staff.

At 9:15 he had physical therapy once again.  This time instead of walking, he did some strength exercises. His Physical Therapist had him stand up straight for about a minute next to his bed and then had him sit down. He repeated this exercise about 5 more times trying to stand up for as long as he could. Of course during the entire time his PT was next to him and holding on to his belt when he stood while I stayed on the other side holding to his arms.  Jayson was able to complete the exercises and was able to stand firmly each time.  But he was tired after the session and he was moved to the recliner facing the window. He rested for about 2 hours, squirming around every 20 minutes trying to find a comfortable position.

Cousin Alyssa with a special treat!

While he was on the recliner, my sister, Jannette and her daughter, Alyssa, came by this morning with a gift for Jayson. They were at Disneyland for the past two days on a family vacation and came by with a Disneyland churro for Jayson. This is one of Jayson's favorite treat at Disneyland.  It was about 1.5 ft. long and Jayson smiled as Alyssa presented it to him.  I said he could taste it and I was thinking he was just going to lick the cinnamon sugar, but I should have known better. Jayson put it in his mouth and tried to get a big bite out of it. Of course, I thought he might get too big of a piece and he was not ready to eat to eat solid food. So, I tried to pull it away so he doesn't get a big chunk of it. He was able to get a small piece and the look on his face as he chewed the cinnamon sugar churro was of pure delight. Thank you Tacto family for that very special and delicious gift you gave Jayson.

Trying to get a chunk of a Disneyland churro.

At 11:30, he went back to his bed and slept as much as he did. Around 12:30, my Auntie Luz came by with the Berry Smoothie Jayson had requested the day before along with some hot dog & pizzas for Henry, Mommy Del & I.  I gave Auntie Luz the honor of helping Jayson drink his smoothie, but the smoothie was too thick for Jayson to sip it through the straw. So, I just put some of the smoothie in his mouth using a straw. After his first taste, I could see how much he enjoyed it. He said it was like having a Popsicle. I'm sure the cold smoothie felt good as it went down his throat. After a few more serving, he was satisfied.

Berry Smoothie...Very Refreshing!

At about 1:45 in the afternoon, he was given a bath and his body was examined for bed sores. Luckily the bed sores he already had were healing and no new sores were found.  His skin is still peeling, especially on his back, but they're all looking good. We just have to keep his skin moisturized.


After his bath, Jayson was put on the recliner once again.  He sat there for another 2 hours sleeping now and then while Mommy Del & I watched him. Grandma Lucy & Grandpa came to visit him twice today and spent some time with him as usual. They talked to him, prayed for him, encouraged him and shared their joy at the improvements Jayson was making.

At 5:00 this evening, a couple of ENT doctors came by to check on Jayson once again.  They examined his nose and mouth to make sure he was doing well and there were no new issues. I didn't get a chance to talk to them before they left so I don't know if they found anything to be concerned about. I will have to ask one of his doctors when I see them later.

The only other concern Jayson's doctors have these past few days besides his fever is his liver. It had started to show signs of slight liver failure these past 2 days. It's not as bad as it was 2 weeks ago, but the potential is there, so they are taking some precautionary steps to prevent the liver from getting worst. Please pray that this issue will once again be taken care of.

Henry's sister from Cebu arrived today and came by to visit us here at the hospital.  It's been 3 years since she had last seen us and she'll be here to help us take care of Jayson. She came here along with Henry's other sister, Melissa and her family.  They brought us some Chinese food and the won ton soup Jayson had requested for dinner. Jayson was able to enjoy the warm soup and small pieces of won tons.

It's almost 10:30 right now. Jayson is in bed sleeping.  Henry just walked his mom to the Fisher House for the night and will be back to watch Jayson tonight.  We anticipate it to be a quiet night since Jayson doesn't have any respiratory issues and the nurses will only need to check his vitals every 4 hours instead of every hour. We pray that Jayson has a restful and peaceful night.  Good night until tomorrow.

Lord, thank you again for blessing us with another beautiful day with Jayson.  Thank you for giving him the strength to do his physical therapy, the appetite to want to eat and the courage to endure all that he has. Thank you for the family and friends who continue to encourage us with their words, provide us with food for our bodies and strengthen us with their prayers. We continue to glorify and praise you Lord for who you are and who you'll always be.

Physical Therapy Video

Please enjoy this special video of Jayson's first physical therapy session from yesterday, October 1st. Thanks to our son, Justin, for helping me get this video in the blog.

There is no need for additional words to describe what's on the video. We just praise God for each miracle we see in Jayson!

Chocolate Milkshake Never Tasted So Good

As per our first blog for the day, we shared our great joy when Jayson was able to walk on his own with the assistance of a walker and two physical therapist this morning. We are just so amazed at how much strength and determination he has.  All glory and praise goes to our almighty God! We know he has a hand in every improvement we see in Jayson.

Let me give you a summary of what Jayson has been doing today. He was transferred to a recliner at about 8:30 a.m. this morning.  He had a restful night according to Henry who stayed up with him all night while I slept in the same room. The room that we had been using next to Jayson has a new patient so we've moved all our belongings to Jayson's room. It's a bit tight but we're not complaining.  The ICU staff has allowed us to use the other room when they didn't need it. So, we were thankful for each day we were able to use it.

Chocolate Milkshake!

After Jayson's physical therapy session, I met up with Jay's medical team when they were making their rounds. They have shared their concern about Jayson's liver. There's evidence that his liver is not functioning properly, so they may need to add new medications or make changes to their treatment soon. Jayson still has a fever and his doctors still do not know what's causing this. We were notified that the sample the ENT doctors took from Jayson's nasal cavity shows there is something growing in the culture, but they have not been able to identify what is growing yet. Jayson will continue to receive platelet and plasma transfusion when his blood count is low.

Aside from being able to walk with the walker, there is additional good news we'd like to share today.  His ICU doctor has allowed Jayson to eat some soft food such as pudding, applesauce, shakes and soggy cereal. So, after the meeting, I shared this good news with Jayson and asked him what he wanted to eat. He asked for chocolate milkshake from McDonalds. So, I quickly went to the ground level of the hospital and got him his chocolate milkshake. I had him sip some shake from a straw and it was Jayson's first taste of a chocolate milkshake in a long while. Tomorrow he wants a berry smoothie from Costco, so that's where I'll be heading for lunch tomorrow.

Jayson was more alert today than he has been the past few days.  He was very responsive and more interactive today with family members and ICU staff. His social worker, Heather, came by to talk to him about his wish.  The representative we've been working with contacted Heather to see if there was any wish that they can fulfill for Jayson.  Heather mentioned it to Jayson, but he wasn't too alert at the time of her visit. We will try to work with Jayson in the next few days to see if he has another wish he'd like instead of the cruise.

Right now, it's already 10:40 p.m. Jayson just had a few teaspoons of cocoa puffs cereal with milk. He's had a long and busy day.  Hopefully he'll have a restful night and will have more energy for day 2 of his physical therapy. I have yet to figure out how to add the video of him walking this morning to my posting. I took the video from my cell phone, but when I tried to add it to my post, it wouldn't play.  If anyone has an idea of how to do it, please call me or write a comment to this posting.  We're excited to show this video to you, so I hope someone will be able to help me. Thank you in advance and good night.

Taking Steps Forward

First steps with walker

Jayson was evaluated by two physical therapist (PT) at 9:00 this morning to see what assistance he would need to move around. Jayson had been moved to a recliner about 30 minutes before and was sleeping comfortably. I put some socks on Jayson and one of the PT wrapped a belt around Jayson's waist that they can hold on to.  They set up a walker in front of Jayson and he was able to stand on up with some assistance.  After a few minutes, Jayson then began taking small steps forward as instructed by one of the PTs. We were all impressed at how quickly he was able to move considering being in bed most of the 3.5 weeks. He was able to control the walker, moving it to the left or right as needed. Jayson walked across the room towards another seat, rotated around and then sat down. His movement was witnessed by his doctors, nurses and family members.  We cheered every step and encouraged him all the way.

Jay's ICU doctors watch him walk.

After a few minutes of sitting down, he wanted to return to his bed. So, he stood up again and made his way to the bed, turned around and backed up to the side of the bed and sat down.  He is now laying in bed once again and resting.

I was able to video tape Jayson's first steps.  I know many will be so happy and thankful to see Jayson making progress. I will try to figure out how to add it to my next blog so that you can all see him walking. In the meantime, please join us in celebrating Jayson's first steps and praising God for his continuous mercy and blessings!