A Trip for Jayson

Finally out of his room & travelling around PICU.

Jayson is off the Vapotherm!  He is now on a nasal cannula that has lower settings for the oxygen setting. More importantly, the nasal cannula system is mobile. It can be connected to an oxygen tank.  This one changed has allowed Jayson to leave his room for the first time in over a month.  He was transferred to a wheel chair this afternoon.  He was wheeled out of PICU through the Oncology Clinic, 2 North and down the hallway to the Pediatric Ward, 2 East.  This is where Jayson usually stayed overnight for chemo. There, he saw some familiar faces, mainly nurses and staff members who’ve taken care of him over the years. He was rolled down the hallway and was able to view the outside world through hallway windows.  He then returned to PICU and before re-entering his room, was taken around the PICU area. We are so happy that Jayson was able to get out of his room even for a short time.

Jayson is talking more but there’s still a level of confusion.  He was telling me a story about how his grandpa was getting him a smoothie and then was chasing Nicole (a relative) and Keilani with a banana.  His grandpa did get him his banana/strawberry smoothie, but the part that he was chasing others around with a banana was obviously not.  I think his mind is getting bits and pieces of what he's seen, what’s real, and putting it together in a story.  

With grandpa...thank you for all the smoothies!

Jayson had also told me that the Make-A-Wish lady came by while I was gone yesterday to let us know that they will postpone our Disney cruise for 2-3 months.  He said he wasn't ready to go yet and I told him that’s fine. We were previously scheduled to go the week of Oct 20th. Today, I met with our social worker, Heather, who has been in contact with the Make-A-Wish foundation. She's been keeping them updated on Jayson's progress.  I asked her if she came by yesterday and talked to Jayson while I was gone.  She said she did talk to him briefly, but the physical therapist came in for Jayson's session so their conversation was cut short.  I told her what Jayson had told me yesterday about the cruise, but she said they never discussed the cruise at all.  So, we don't know where Jayson was getting all this information from. 

The other day, his friend, Esther, came by to visit with her mom. Jayson greeted her and told her that he had a weird dream about the apocalypse.  He didn’t go into details because he fell asleep shortly after that. There is still some level of confusion and memory.  He said he didn’t remember Esther’s visit two days before.

This afternoon, we met once again with Jayson’s medical team for the family meeting.  In this session, we met at the staff lounge since Jayson was asleep in the room. I expected this meeting to be easier to handle considering the progress Jayson was making…but I was wrong. The meeting started out well. Dr. Zabrocki showed us graphs of the different data they were monitoring over the past month. This includes graphs on his respiratory, temperature, white blood count (WBC), Kidney (BUN) and Liver T Bili and CRP. All except the WBC show improvements. 

Now that his respiratory system has improved, the focus now is on Jayson’s underlying conditions (Alveolar Rhabdomyosarcoma and Acute Myeloid Leukemia).  This is day 33 of Jayson’s hospital stay and day 30 since his chemotherapy for AML was administered.  Today is also when we can begin to expect any blood production from his bone marrow.  As of today, there hasn’t been any change.  His white blood count is still drastically low.  Per Jayson’s oncologist, if Jayson’s bone marrow does start to produce its own blood, they fear that it may be mostly blast white cells, the immature cells he had when he was brought in a month ago.  If that’s the case, his oncologist does not want to do another round of chemotherapy because this will not be good for Jayson. 

We are hoping that Jayson’s bone marrow does produce healthy blood cells and that it does so before any cancer cells return.  Because if the cancer cells return before the healthy blood cells, Jayson’s condition will deteriorate rapidly and he will be in the same situation as a month ago.  So, it’s very critical for his bone marrow to start producing healthy blood cells and to do so quickly.  This is now a race to see which cells comes first and this will determine what lies ahead for Jayson.

 

On the nasal cannula, sleeping on bacon.

At this point in time, we take joy in Jayson’s progress.  We are able to interact with him in a meaningful way and Jayson is able to express himself clearly.  Jayson doesn’t need as much medication and fluids and has been unattached to the “Tree of Life” most of the day. He gets antibiotics periodically and blood products as needed, but for the most part, Jayson is free from the “Tree of Life”.

As we enjoy this time, we also need to take the opportunity to talk to Jayson about what may lay ahead for him.  Some of it will be difficult to discuss, but Henry & I both agree, that Jayson needs to be involve in some of the decisions we may need to make about his care.  If the cancer cells returns before the healthy blood cells, Jayson’s time with us will be very limited. Henry & I will need to let Jayson’s doctors know what we plan to do, whether to have him in hospice care at home or comfort care either at home or hospital.  Our decision will mainly rely on what Jayson wants.

Over the month I mentioned how difficult it’s been when Henry & I had to make decisions.  Mrs. Draper, Jayson’s biology teacher, shared a quote from her neighbor who works at Rady Children’s Hospital who said “Any decision made in love is the right decision.”  Henry & I have always based our decision on our love for Jayson and we have asked God to guide us when we needed to make decisions.  It has worked for us this entire time and so we will continue to do this.  Please join us in prayer as we ask God's guidance in coming up with the right words and right questions when we talk to Jayson tonight. Heavenly Father please hear our prayers.