Monday, October 28, 2013

Cranes for Jayson

Lazy Saturday afternoon with Mocha 
Saturday, Oct. 26th, was a quiet day for our family.  Jayson did his daily routine which included exercising in bed, walking using his walker and spending time with visitors and family.  His good friend Esther came over once again and the two of them watched "Tangled" on his computer.  Even though Jayson fell asleep twice during the movie, Esther didn't mind. She just treasured the time she spends with him.  Esther was picked up in the afternoon by her mom & brother who prayed over Jayson before they left.  In the late evening, our relatives from West Covina, the Escobar family, came by to see Jayson once again.  It had been about 2 weeks since they last saw Jayson and so they were pleased to see him at home and comfortable.






Sunday was a much busier day for Jayson. After eating breakfast, Jayson wanted to go to the living room to rest.  He was able to walk with the use of his walker and some assistance from his dad. It's amazing to see how much he's improved since his first physical therapy session at the hospital. Jayson gets very tired after his exercise but he is still determined to walk on his own in November. It is obvious to us that Jayson has a strong drive and will to walk.  We just hope that his body will match his determination.


Sunday brought more visitors and surprises for Jayson.  Jayson's high school in Rancho Penasquitos, Westview High School featured an article about Jayson and his battle in their newspaper, The Nexus. The article by An Nguyen titled "Cranes for Cancer" described two students goal of making 1,000 paper cranes to show support for Jayson.  According to the article, "A thousand origami paper cranes held together by strings is widely known by ancient Japanese legends to grant one wish to those who fold them; a wish that could mean a longer life or even successful recovery from illness or injury." The two junior students were Julia Pene & Karina Lin. They were inspired to make 1,000 paper cranes for Jayson, after visiting Jayson at the hospital.  Karina was the older sister of Jayson's close friend, Janessa.  Julia turns out to be the daughter of one of Jayson's oncologist at NMCSD.

Covered with cranes!

Karina & Julia present Jayson with the cranes


On Sunday, just before noon, the two girls arrived with Janessa, her family and Mila Stojkoski.  The girls surprised Jayson with almost 2,000 cranes! Jayson was surprised and speechless.   The girls introduced themselves and explained the story behind the origami cranes they brought. They wanted Jayson to see how much support he was getting from friends and strangers.  They gave Jayson a list of the people who had helped them make cranes. They said there were many more people that weren't on the list.  Friends from New York and UC Berkeley made some origami cranes then mailed them to the girls.  This was just truly amazing!  To see Jayson's face light up as they placed the cranes on top of him was priceless. Now, he can look at these cranes hanging in his room to visualize the many people who are praying and supporting him.

With Karina Lin and copy of "The Nexus" paper
The girls also gave us some copies of The Nexus newspaper that featured the "Cranes for Cancer" article. I will try to put a copy of the article in a future posting for you to read or add a link to this article.








Happy Birthday Janessa!
Sunday was a special day for Jayson's friend, Janessa. It was her 15th birthday and her wish was to visit and spend time with Jayson on her birthday. She wasn't the only one who was happy with her wish. She also made her birthday a special day for Jayson.



Meeting Julia Pene for first time




With cousin Mila

With Lepule Family and their penguin gift
On Sunday was also visited by the Lepule family. They have been a close family friend for years and had visited us while we were stationed in Hawaii back in 2008. Little Tana was only about 5 years old at the time and Jayson had introduced him to video games (Club Penguin) during their visit. Ever since then, Little Tana has been hooked on video games. As a token of their appreciation, Little Tana and his family gave Jayson a penguin hat to keep his beautiful head warm. They also brought us some fried chicken and side dishes for lunch. Thank you Lepule Family!

Hanging out with cousin Matthew
Jayson was also visited by his Uncle Jerry and his two little cousins, Andrew and Matthew.  They spent time playing video games on the computer and on the XBox.

Taryn and her mom also came by during the late evening bringing us some dinner - chicken apertada and homemade banana bread! Jayson enjoyed spending time with Taryn while her mom and I chatted. We discovered that we had attended the same high school, Sweetwater High School in National City.

Monday, Oct. 28th, was another quiet day at home. Not much to report today. It's been almost a week since his last fever and Jayson continues to do well.  He just had a couple episodes of vomiting right after he ate and we are making sure he doesn't get dehydrated. Jayson did his daily exercises and spent most of the day in the family room with his dad and grandparents.

Jayson is scheduled to go back to the NMCSD tomorrow morning for check-up once again. Based on the past few check-ups, he'll most likely get more blood transfusions tomorrow after the results of his labs.  We hope that we get more good news during tomorrow's visit.

In the meantime, we'll continue to count our blessings and pray for Jayson's full recovery from cancer.  We will continue to focus on the positives and take things day by day.  Thank you always for your thoughts and prayers.  God bless you all.



Friday, October 25, 2013

Rainbow Fish

Praise God! Jayson continues to do well at home. He hasn't had a fever in the past 3 days and if this continues, we may reduce the number of antibiotics that he's been taking. Jayson has been more active the past few days.  On Thursday he was able to walk around with his walker a few times during the day.  In fact, he walked to the kitchen to check out what he wanted to eat from the pantry.  Henry walked behind him, holding on to a belt that was around Jayson's waist, just in case Jayson's legs got weak. He stayed a few hours in the family room, on the recliner playing video games and watching TV.

On Thursday afternoon, one of his hospice nurses came by to check on him, take vitals and examine the wound on his left hand and the pressure sore on his right heel.  Both areas were healing nicely and we will continue to keep an eye on them.  The rash that he had all over his body is almost completely gone.  His old and darkened skin is peeling gradually revealing his new soft baby-like skin.  We moisturize his skin daily Jayson has been annoyed at seeing his skin and so has tried to expedite the process by peeling away some of the skin that is drying out. On a few occasions he's given a piece of skin to a couple of friends.  I told him that reminded me of the story of Rainbow Fish who gave some of his shiny scales to his friends. If you haven't read this story, I highly recommend you do. It's a great story with a wonderful message.

Jayson is starting to get his appetite back. He asked for a cheese quesadilla from Taco Bell yesterday afternoon. He was able to eat half of it along with the Tropical Blast icee-type drink. At dinner he had about 4 tablespoons of beef caldereta with rice (from CFC Abad Family). He normally drinks a homemade banana-strawberry-spinach smoothie 1-2x a day and usually eats 1 whole banana each day.

The rest of Thursday was spent at home.  Emily & Alana Reyes visited him in the evening when they delivered some delicious roast beef dinner for our family.  My parents stayed over and watched Jayson part of the night giving my mother-in-law and sister-in-law a little break from night shift duties.  Jayson was able to sleep most of the night.

The following morning, Friday (Oct.25th), we woke up early to take Jayson to the NMCSD once again for lab work and blood transfusion. My parents were able to take care of Keilani and drop her off at school so we were able to go straight to the hospital with my mother-in-law & sister-in-law.  The drive from Murrieta took us almost 1.5 hrs. We only hit traffic on the 163 freeway near I-8.  Jayson slept through most of the way.  He woke up after an hour to eat some yogurt.  Unfortunately, he threw it up just as we got to the hospital.

We brought Jayson to the Oncology Clinic in 2 North and was seen right away.  They put him in the Infusion Room where they were going to do the blood transfusion.  Some blood samples were taken and were sent to the lab for testing.

After about 45 minutes, Dr. McManaman came in to examine Jayson and share the preliminary lab results.
His Hemoglobin (HBC) was at 9.4 (Normal range 9.5-14.8) and therefore Jayson didn't need to get any red blood transfusion.  His platelet level was low at 10, so 2 units of platelets were ordered.  His total white blood count (WBC) continues to improve. It was 1.5 today, up from the 1.2 this past Monday. Dr. McManaman said that if Jayson's blood count continues to improve we may be able to reduce his visits to the hospital from 2x a week to just once a week. We'll definitely be praying for that.

There are some additional changes to be made based on Jayson's lab results. For one, his potassium level was a little low, so Dr. McManaman recommended increasing the dosage of the K-Phosphate to 4x/day from 3x/day. His calcium level was also on the low side, so she recommended giving him calcium supplements. Dr. McManaman could still hear some crackling sound in his lungs due most likely to fluids.  She recommended getting Jayson up and walking more frequently. She also suggested having him sit up as much as he could instead of lying in a reclined position. She recommended a few exercises to strengthen his lungs as well. Dr. McManaman also gave Jayson the "OK" to play with his new puppy, Mocha. I'll make sure to take pictures of them to share with you.

RT Patti and Nurse Alex visit Jayson in 2N Clinic
While we were at the 2 North Clinic, the PICU staffed learned that Jayson was at the clinic.  Many of the staff members on duty came by in the morning to see him and say "hello".  They were all so happy and pleased to see Jayson doing well and told us how good he looks.  Many asked how we were doing and told us that they continue to pray for us.  It's great to know that their compassion and concerns continues even though Jayson is not at PICU any longer.

At about 10:45 a.m. Jayson was given his pre-meds of Tylenol and Benadryl.  Then about 30 minutes later, his nurse, Joe, gave him the 1st unit of platelets. This was immediately followed by the 2nd and last unit of platelet at noon.  Jayson was done with his blood transfusion by 12:30 in the afternoon.  We stayed for another 45 minutes to eat lunch.  Jayson had requested a Costco cheese pizza and berry smoothie from his dad. This was the first time in about 2 months that he had enjoyed pizza.  He was able to eat about 1/3 of the slice and the entire smoothie. We left the hospital about 1:30 in the afternoon and headed back home to Murrieta.

Nurse Joe takes care of Jayson at the Oncology Clinic.
Jayson again slept through most of the drive home. Luckily, we didn't hit too much traffic during this afternoon drive.  When we got home, Jayson played on his laptop and rested. He asked for his favorite homemade smoothie and then slept.  I had to wake him up a few times since then to give him his medication. It's past 11:00 p.m. right now and he's sleeping soundly without being given the Ambien medication for sleep. I hope that he'll be able to sleep the rest of the night.

He's excited about tomorrow. His friend Esther is coming to visit once again and they plan on watching Disney's "Tangled". Besides Esther, I'm sure we'll have more family and friends visiting him this weekend.

As always, we will continue to rely on God for strength and hope. We will continue to pray for Jayson's recovery and complete healing.   We will continue to enjoy each day we are blessed to have Jayson in our life and we will continue to show Jayson how much he is loved by us and his heavenly Father.

Wednesday, October 23, 2013

White Blood Count Improving

Henry & I took Jayson back to the NMCSD this past Monday for a complete blood count check and blood transfusions. We arrived there about 8:30 in the morning and his nurse quickly drew some blood for lab work. We were then taken to the pediatric ward, 2 East, where Jayson was given a room to stay at while he received the transfusions.  After about an hour, Dr. McManaman came in with the lab results and the plan.

Dr. McManaman examines Jayson
We have some good news to share.  Jayson's bone marrow is starting to produce its own blood! During last Friday's checkup, his total white blood count (WBC) was at 0.4, up from the 0.2 when he was discharged from PICU. The additional test that was done on Friday also indicated there were no blast cells in this sample.  The total WBC from Monday's labs was 1.2. The count went up by 0.8 in 3 days! We realize that 1.2 is still below the normal range of 4.5-13.5, but we are happy to see that Jayson's WBC is moving upward. Jayson's platelets was low and his red blood count had gone down, as expected, so Jayson received 3 units of platelets and 2 units of red blood on Monday. Each unit of platelet takes about 30 mins. to administer and it takes about 1.5 hrs. for the red blood. Based on these rates, total transfusion time was expected to take about 5 hrs. Jayson received Tylenol and Benadryl before the transfusion to minimize any allergic reaction to the blood and platelets. So, total it was suppose to take about 6 hours total for the transfusion process, however, we were there for 12 hours. About half of this time was spent waiting for the blood and platelets to be available from the blood bank. It was a long day for Jayson, but at least he was comfortable in bed.  He spent his time either napping or playing on his laptop.

During Dr. McManaman's examination, Jayson rubbed his head and asked her if his hair was going to grow back. Dr. McManaman said that as long as he was getting chemotherapy, it would not.  Jayson immediately got very emotional and teary-eyed as soon as he heard her answer. Dr. McManaman did tell him there was the option of getting a wig to help, but this was not what Jayson wanted.  He wanted his own hair. I just looked at him and felt the tears running down my own face as I wiped away Jayson's tears from his cheeks. I felt his disappointment and prayed to God to help give me the words to comfort him and God did. I told Jayson that he looked beautiful even without hair.  He had a nicely shaped head. I also asked him if he remembered when his hair had initially fallen out when he first received chemotherapy in December 2011 and he said he did. I also told him that once the chemotherapy stopped, his hair and grown out again. I told that it can be the same way when he was done receiving chemotherapy this time around.  I also asked if there was anything we can get for him to help in the meantime. So, he asked for some beanies to cover his head. I immediately contacted Jayson's older brother, Justin, at school and had him buy some.  Within a few hours, Justin was in the hospital with four beanies and Jayson picked one to put on.

As I mentioned in the previous post, I had noticed that Jayson was more emotional now and his reaction to Dr. McManaman's answer about his hair is evidence of his emotional state.  I'm not sure if the gravity of his condition is finally hitting him or if there's something else going on.  We will keep an eye on this, but on the meantime, we will continue to show our love to him, give him words of encouragement and hope.

We didn't arrive home until about 10:00 on Monday night. On our front porch was some food that our closest friends, the Salardas, had dropped off that night. It was a welcome sight!  Thank you Glenda & Jong!

Monday was a long day for Jayson and he had mostly slept during the drive home. He slept well the rest of the night and he was excited for the following day when his friends from the Youth For Christ (YFC) would be coming to have their weekly household worship and meeting.

On Tuesday morning, Jayson received some visitors from the Elizabeth Hospice organization.  His case worker, Denise, came with Gina, a nurse practitioner and Brian, a student. Gina examined Jayson to make sure he was doing well and was comfortable. Denise & Brian checked Jayson's medication supply to make sure he had all the medication and supplies needed.  Later that morning, Heather, one of the social worker from Elizabeth Hospice came by to talk about some of the other non-medical services that their company provides, i.e. counseling & spiritual support.  They were all here to make sure that our family was taken care of, especially Jayson.  They are here to insure that all of our family's needs & concerns were being addressed.

Bro. John leads the prayer
During the afternoon, Jayson spent most of the time resting so that he would have energy to participate in the YFC household that night. His friends and fellow members of the YFC began arriving just before 6:00 p.m. As soon as everyone arrived, they began their household with worship songs.  Jayson sat on our living room couch as the other youth stood, forming a circle in the room. They sang three songs and said praises glorifying God in between the songs. Jayson was able to sing and praise along with them.



After singing worship songs, the topic for the night was God's love.  While sitting in a circle, each youth shared how God showed His love for them that day.  Jayson was able to share as well.


After the sharing and prayers, the group shared a meal and spent time socializing among themselves. It was so great to see Jayson participating in the household meeting after about 7 weeks of not being able to.  I could tell he missed attending his weekly household and he enjoyed spending time again with his brothers and sisters in Christ.  It was a beautiful meeting and a nice way to end the day.

Chaplain Jeff sings to Jayson
Today, Wednesday (Oct. 22), was quieter day for Jayson.  In the morning, he asked to be taken to the family room to play video games on the X-Box.  He had a peanut butter and jelly sandwich and milk for breakfast.  At about 11:00, Chaplain Jeff from the Elizabeth Hospice came by to introduce himself to us. He met with Jayson, prayed over him and even sang the "Our Father" to Jayson before he left.  His beautiful and deep voice just filled our home.  In fact, my sister-in-law, Carole, was asleep upstairs during this time and when she woke up she asked if there was a mass while she was sleeping.




Esther visits Jayson in Murrieta
At about 2:30 in the afternoon, Jayson's friend Esther came by to visit just after finishing up on Qtr. 1 finals at Westview High School. She came up from Rancho Penasquitos with her mom for a few hours to spend time with Jayson.  The two of them watched "Ratatouille" and ate some popcorn. Jayson was happy to see Esther and her mom once again.

In the evening, our family was blessed with a meal from Deacon Jim and Sister Merle.  Our Couples for Christ family had set up a meal train for us and since Saturday, we have been receiving a meal from a CFC family every day.  This is just one of the many blessings that have come our way.


Another blessing that came our way today was unexpected. I was able to watch Keilani at her new dance studio in Murrieta.  Our friend, Luz, had signed her up for classes while we were still in the hospital.  It's been about 3 weeks since she started attending jazz and hip-hop classes. Today was the first time I was able to watch her in her hip-hop classes. Before the class started, I talked to Liz at the front desk to make arrangement for automatic monthly payments for Keilani's classes. She couldn't find Keilani's paperwork and had to talk to Kellie, one of the owners of the studio.  When Liz came back, she looked at me and told me that Kellie & her mom, Karol, were aware of our family's situation and said we didn't have to worry about paying for Keilani's classes.  I was so touched and I could feel the tears about to come as I looked at Liz in disbelief.  By this time, Liz was also getting teary-eyed as well. I kept asking "Are you sure?" and saying "Thank you."  Liz just nodded and smiled. I told her I wanted to thank Kellie personally so she pointed me to the classroom where Kellie was teaching at the time.

I waited in the waiting area as I watched Keilani in her class through the glass door. After the classes were done, I saw Kellie come out of her class. I approached her, introduced myself as Keilani's mom and said "thank you for your generosity".  She said she understood and this was one way she could help us. She also said that Keilani can take any other classes that she wanted to. She said she was happy to have Keilani in her jazz class and appreciated Keilani coming to class with a smile. It was comforting to know that despite what was going on with Jayson, Keilani is still able to enjoy life.  It is so rare to find a company where the bottom line is all that matters.  This kind gesture by the owners of Studio 31 speaks volume about not just the heart and character of their company but also of the owners themselves. Thank you Kellie, Karol and Studio 31 for your generosity and kindness!

Still praising God!


YFC Topic: God's Love


Monday, October 21, 2013

Happy To Be Home

Life Guard on Watch
I know it's been 3 days since our last post and I've receive many emails, phone calls and texts from family and friends who are asking how Jayson is doing.  First of all, thank you for your interests, concerns and prayers. Secondly, I'm sorry I haven't been able to post the past few days, but I'm happy to report that Jayson is doing great and is very happy to be home.  

He asked me today if he had to go back to the hospital tomorrow since tomorrow is the 5th day. He recalled that he had told his doctors that he wanted to go home for 5 days.  His question brought a smile to my face and my answer brought a smile to his.   I explained to him that we would need to take him to the hospital about 3x a week to get his blood count checked and for blood transfusions, if needed. I told him he can stay at home as long as he wants and as long as he was doing well.

Last Friday, Oct. 20th, Henry & I brought him back to NMCSD 2 North clinic in the morning to get his blood count checked. Based on the results, he only needed 2 units of platelets transfused that day.  His red blood count was holding steady and his white blood count (WBC) has increased.  His oncologist, Dr. McManaman, wanted to get a manual count to make sure that the increase in his WBC was not due to the blast cells (immature white blood cells).  We haven't heard the result of this manual count yet.  Hopefully, we'll find out tomorrow morning when Jayson returns to NMCSD once again for another complete blood count check. 

During Dr. McManaman's physical examination of Jayson, I asked her to look at Jayson's calves and feet. We just noticed that the red rashes that he had on his calves and feet were almost maroon-like in color.  She told us that these were like little blood clots and may be a sign of his cancer's progression. She warned us that this may gradually produce open sores with clear liquid coming out of them. She said they won't be painful, but may be distressful to look at.
 
With Nurse Katie
It took a while for the blood bank to prepare the platelets and give it to Jayson's nurse. We had arrived about 8:30 a.m. that morning and Jayson was given his premeds; Zofran for nausea and Benadryl to minimize getting an allergic reaction to the platelets.  Even though each unit takes about 30 minutes to administer, we didn't leave the hospital until about 2:30 in the afternoon. While we were there, a few of Jayson's doctors and nurses came by his room to see how he was doing. Jayson told one of his ICU physicians, Dr. Byrnes that he had just eaten breakfast.  Dr. Byrnes asked him what he had for breakfast, but Jayson couldn't remember.  All he remembered was that "it was delicious!” I would describe it more as "Grrrrrrrreat!”  He had eaten a bowl of Frosted Flakes cereal with milk.

It was about 4:00 p.m. by the time we arrived home again. In the afternoon, Henry & I gave him a shower in the bathroom.  Although we had all the equipment and supplies we needed, we still lacked the experience in taking care of Jayson ourselves. At the hospital, the nurses and staff took care of all his medical and hygiene requirements, now; it was mainly up to Henry & me to do the job. We've been learning as we go and after four days of getting organized and learning from our mistakes, I think we're finally getting the hang of it. Henry & I both have our main roles and responsibilities in taking care of Jayson, but our family & friends have pitch in to help with whatever we needed. Thank God for all the support we continue to receive.

Friday evening, a few family members and friends came by to visit. They were all happy to see Jayson at home once again, comfortable and content in his room. Jayson has been sharing his story about his experience with Jesus and his Tita Anna to all of his visitors this weekend.  Even though they all knew the "Go Back My Child" story I shared on the blog, it was more powerful when they heard it directly from Jayson. 

With Panganiban Family
With Grandma Lely
















With Colada Family 















At about 9:30 p.m. Kristen arrived with a few of Jayson's closest friends.  They had come from the Youth For Christ (YFC) weekly household worship/meeting.  Jayson was more energetic and talkative while they were here for a few hours.  Some of the comments and stories Jayson shared along with his actions made them laugh. Here's a few for you to enjoy.



Jayson slept well Friday night and had more energy the following day. After eating some Lucky Charms cereal in his room, Henry & I took him to the living room couch to get some morning sunshine.  He sat there, took a nap and played video games on his laptop.  At about noon, the Miranda family arrived bringing us some fried rice and longanisa (Pilipino sausages) for lunch. Jayson continued to share his stories and joke as he had done with other visitors. They were all happy to see him once again and we all praised God for the miracle we saw in Jayson. Later that afternoon, he was visited by the Perlas family. Francis was one of Jayson's closest friends and Jayson sang "Happy Belated Birthday" to him. He also sang "Funky Town" which is one of his favorite songs to sing when he was younger.

With his Bro, Peter
With his Sis, Margaret

With Perlas Family
Saturday was a quieter day for us. Jayson didn't have any new visitors after 6:00 p.m. and we enjoyed some quiet time as a family. His older brother, Justin, arrived about 9:00 p.m. and watched Jayson for a few hours. I had given him medication to help him sleep, but he threw up 15 minutes later.  He was restless for a few hours and so I gave him another dose.  He slept well the rest of the night.

Grandpa's Free 24-hr Barber Shop
On Sunday, Jayson was more active and was able to go outside to get some sun. His grandfather trimmed his hair while he was outside.  Jayson has been bothered by his uneven hair and so asked to get a haircut. Afterwards, he played life guard as he sat in his wheelchair watching his sister and cousins play in the pool. After about 30 minutes outside, he asked to be taken back to his room to rest.

Enjoying our backyard with family once again!
With Cousins Andrew & Matthew
With his older brother, Justin

Deacon Jim & Auntie Merle
 In the afternoon, Deacon Jim came by to give us Holy Communion with his wife Sister Merle. Jayson shared his "Go Back My Child" story with them as well. We said he was lucky to get a glimpse of heaven and not many people get to see it and come back.  I noticed that these past few days, Jayson has been more emotional. He easily gets teary-eyed when we talk about his condition and God's love for him. During Deacon Jim and Sister Merle's visit, Jayson started crying.  We asked him why he was crying and he said he didn't know.  I asked him if they were sad tears or joyful tears and he said they were joyful tears. We never did find out why he started crying, but I do believe they were tears of joy. 

In the late afternoon, Jayson continued to get visits from family and friends. It was great to see him interact with his childhood friends and family members. Again, he shared his "Go Back My Child" story with all of them. We noticed that this weekend as he told his story, there were more details.  He had mentioned that when he had seen Jesus & his Tita Anna, they were behind the golden gates and he was outside of the gates. He also said that he had seen angels flying above him singing hymns. He also said that when Jesus told him to "Go back my child for I love you." he just walked back. We asked if he was scared at all and he said he wasn't. He described the place as being all white. I've read and heard similar stories like this, but now I know someone who has actually experienced it himself.  It's re-assuring and comforting to know that (1) my sister is in heaven with Jesus and more importantly, (2) there is a heaven and Jayson was able to see it himself
Childhood friends for over 1o years!
Jayson has to go back to the NMCSD tomorrow morning for another complete blood check. We hope that tomorrow's checkup will show that his bone marrow has started to produce the healthy blood his body needs to fight off the cancer. Again, we don't know what the future holds for Jayson, but I don't think Jesus would tell him to go back just to see him suffer more with cancer. I personally believe that God has big plans for Jayson. I think Jayson knows that as well. He had told me this past Friday while we were waiting for his platelets, that when Deacon Noel (our family friend) had talked to him one-on-one about a week ago, he had asked Jayson what he wanted to do. Jayson said that he wanted to make people happy and that he wanted to be an inspiration to others. Well, Jayson has been making us happy and is inspiring us with his powerful story, his admirable strength and his enduring faith. We love you Jayson and we will continue to pray for your complete healing.

Praise to you our Almighty Father and Savior! Thank you for giving Jayson the gift of seeing you, Joanna and heaven. Thank you for using Jayson as a living testimony of your existence and your love. Thank you for giving Henry & me the privilege of raising your son, Jayson.  We pray that others will get to know you through Jayson and his story. Please continue to use him, O Lord, for your greater glory! 

Friday, October 18, 2013

First 24 Hours @ Home

Jayson was able to finally go home once again.  After 39 days of being in the hospital, Jayson was discharged from NMCSD PICU about 4:15 p.m. yesterday (Oct. 16th). He had received some platelets and red blood transfusion before we left so he didn't have to come back the following day to check his blood count.  It was hard to believe that Jayson was able to come home considering his condition almost 6 weeks ago. Many are amazed at his progress and we give thanks daily for Jayson's improvements. 

After saying "good-bye" to the PICU staff we headed out towards the gray double-doors and through the 2 North clinic, down the hall to the elevator, then out of Bldg. 1's main entrance.  His nurse, "Kuya" Jed, escorted us to the car and helped put Jayson with his oxygen tank in the front passenger seat of our SUV. As we drove slowly away from the hospital, I was happy, yet anxious to get him home.  I had my sister-in-law, Carole in the back seat helping take care of Jayson on the drive home.  Henry was driving our other car with his mom. At about 4:30, I was expecting it would take us 1.5-2 hrs. to get home to Murrieta. However, traffic wasn't as bad as I had expected and we were home by 5:45 p.m. Jayson did very well in the drive home and took a few short naps.  At one point when he was awake, he told me I was driving too fast.  He said he didn't want us to get pulled over for speeding, so I slowed down...slightly.

Kristen & Keilani were already home at that time along with our friend Luz. Jayson's hospital bed, walker and other miscellaneous supplies & equipment were being delivered at that time. So, we temporarily had Jayson sit in a recliner love seat when we got in the house. Once he got settled, he quickly requested his laptop and began playing games on it. 

During the evening, a few family members and closed friends came by to welcome him home. He stayed up and chatted with them for a while.

"Welcome Home" Crew
I took the first night shift watching Jayson until about 1 a.m.  Even though we had  given Jayson his medication to help him sleep, he was restless for about 2 hours.  He would sleep a little and then try to get out of bed.  He was also having some hallucinations during the night. When we were alone in the room, he asked me why "those people were nicely dressed". I asked him, "which people?" He pointed at the foot of his bed. I asked him if he knew them and he said no. So, I told him to ask them why they were dressed nicely, but he didn't. Later on that night as I laid on the cot next to his bed, I noticed that his right arm was reaching for something in the air. So, I got up and asked him what he was doing. He said he was trying to reach the hand reaching out to him. I asked him whose hand and he said he didn't know.Jayson finally slept after midnight and Henry came down to take over. Jayson slept pretty well the rest of the night.

Simple breakfast at home
The following morning, Jayson had some Fruit Loops cereal for breakfast at the dining table. Afterwards, Henry had him lie in the living room sofa to get some sun rays.  Later, Henry took out to the backyard near the pool to get some fresh air and more sun.It was quiet most of the morning and early afternoon. He had some of his "Boost" high-protein drink and a 1/4 of a banana.  He didn't have as much of an appetite most of the day.  But in the evening, his Uncle Jerry cooked some chicken/pork adobo. Jayson had some of the adobo with rice and potatoes.  

Jayson meets his puppy
Our friends Miles & Dorcy came by with the puppy they have been watching for Jayson. Dorcy had sent us a text video last September 8th asking if Jayson wanted this puppy. After seeing the video, Jayson decided he did wanted it. So, we were scheduled to pick up the puppy the following day. Unfortunately, Jayson was brought in to the hospital the night of Sept. 8th and you know the rest of the story.  Miles & Dorcy have been "puppy-sitting" for Jayson since then.  Well, today, Jayson saw his puppy for the first time. It's a Pomeranian and Chihuahua mix. As I learned this week, they are also known as a Pomchi or Pomhuahua. Jayson touched his puppy's back while Dorcy carried her.  What's the name of his new puppy you ask? It's Mochalatta Colada Adams (Mocha for short). Say that a few times. Since we'll be leaving early tomorrow morning to get Jayson's blood count check, Dorcy took Mocha back home with her, but will be bringing her back this weekend.

Playing his guitar for family members
In the early evening, Jayson was on his laptop most of the time, skyping with friends and playing video games.  More friends & relatives came by at night to see him.  In fact, he even played a very short song on his guitar for some relatives. He said he needed to practice some more.

Quirap family members
Right now, Jayson is fast asleep.  His Aunt Carole is watching him right now while I finish this blog. Thank God for our family and friends. Their support continues while we're at home. Grandma Del did our laundry today and my brother cooked us dinner.  All the extra help around the house has given us more time to spend with Jayson. 
Tomorrow, we will be taking Jayson back to the hospital to get his blood count checked and if necessary, he may get some blood transfusion.  We hope to still come back home so that Jayson can fulfill his wish to be at home for 5 days. We're hoping & praying for more days than that, of course.


Jason & Jayson
We want to give a special "Thank You!" to Jason who is a charge nurse at the NMCSD PICU. Throughout Jayson's hospital stay, Jason always came by when he was on duty to check on us and to see if there was anything we needed. Whether it was to help take care of Jayson or just to listen to our story, Jason was there with a smile, a hug or a word of encouragement. He was usually with us during the weekly family meetings. He would give us a hug after a tough and tearful meeting. I want to tell you how Jason went above and beyond his job responsibilities.  Yesterday, when we were getting ready to leave, we learned that Jayson's discharge medication was not ready and we would have to wait for them. Jason stepped in and offered to deliver Jayson's medication to our home in Murrieta after work. Now, Jason lives in Orange County and he normally takes I-5 to go home.  He was willing to go out of his way, drive an additional 1.5 hrs. to bring us Jayson's medication so we didn't have to stay another minute at the hospital. He jokingly told us he was doing it because we fed him some lumpia. Either those were VERY delicious lumpia or Jason was just being humble. I know it's because he has a great big heart. With this simple act, he gave Jayson the gift of more time to spend at home. Thank you Jason for being a blessing to us.

Wednesday, October 16, 2013

Going Home...

Jayson Beaver
Jayson will be heading home to Murrieta sometime this afternoon. His medical team is getting all the medications, supplies, bed and equipment ordered.  They are also making all the necessary arrangements for Jayson's care while at home.  Jayson is excited to go home. He's already requested beef sinigang from his Grandma Lucy for dinner.

He's tired right now because he didn't get too much sleep last night.  I've been encouraging him to sleep since this morning, but he's been restless. His lack of sleep is obvious.  He's showing some signs of confusion and he sometimes says things that don't make sense. For example, he was telling his sister, Keilani, not to put something in her mouth and telling his cousin AJ not to jump on the bed.  Neither Keilani nor AJ are here. He's also mentioned that he has an assignment due for his Graphic Design class. I told him his teacher knows he's in the hospital so she wouldn't be expecting him to turn in that assignment at this time.

With Taryn wearing the shirts they had made.

Earlier this morning, Fr. Spencer came by and prayed with Jayson and also gave thanks for the improvement he's made. He also gave him Holy Communion before saying good-bye.

Right now, Jayson is getting red blood transfusion. This will take about 2 hours to complete. Afterwards, he'll be getting 2 units of platelets which will take about an hour. This should give him some energy afterwards.

During the 5 1/2 weeks here at the NMCSD PICU, we have met many incredible people. Many offered words of encouragement and prayers. Here are few of Jayson's angels here on earth.

Dr.Berns has seen Jayson from the very beginning.

Maria comes in everyday cheerful & smiling.


Tatay visits before & after his shift to see Jayson


Resp. Therapist Felix includes Jayson in his daily prayers.


Jayson was watching me as I was working on this post and he asked me if I was writing a story.  I told him I was letting our family and friends know how he was doing and that he was going home today.  He said he wanted to write something on the blog. I suggested I do the typing and he can just tell me what he wants to say.  He told me to make sure that I put that it's "by Jayson".  This is his message word for word:

"I'm sleepy cause I haven't slept in the past 2 days because I think it's from the 3 weeks of sedation. I had waffles for breakfast today and I'm trying new foods. So I can get used to being at home more. When I get the chance to be at home. Thank you all for your prayers and thank you for reading the blog."  by Jayson