Thursday, July 4, 2014~1:46pm

Last update:

Jethenro responded to the antibiotics just long enough to be taken off of life support, but within 24 hours his neutropnic body had developed another infection and he was headed back into septic shock. He did not want to be intubated again, and neither did the rest of us, so surrounded by his family Jethenro was given comfort measures.  We believe he was hemorrhaging internally because he was losing platelets  almost faster than they could be infused. His eyes had become blood shot, His kidneys and liver had been damaged, and there were probably other organs affected.
Yet this did not stop him from smiling, cracking a few jokes and thinking of others. The last 48 plus hours of his life he was afraid to go to sleep. He knew he had 'died' and that was the reason he had been intubated. He was terrified to go through that experience again.

July 1~ Day 24

Much has happened since the last post.  Jethenro went into septic shock on Thursday night June 26, 19 days after being admitted to the hospital.   He was just weaned from all life support yesterday. He is still in very critical condition.  We almost lost him 3 times that  first night. Each day there is progress, and we are so very grateful for miracles. He was transferred from the ONC unit to the PICU unit to the adult ICU  in a matter of hours that first night. The PICU unit does not have an intensivest present at night, and they were having to call the doctors for every medicine needed to get the orders before getting it from the pharmacy.  They were  not able to work fast enough. This sent my nurse husband into action.  He called a Dr. friend who was on site within half an hour. The first miracle. When he asked for things, the PICU staff did not have what he needed to stabilize a young adult. He got on the phone to transfer him to adult icu.  He was told that there were no beds. Jethenro happens to have an aunt that was present in the room that works in the icu. She told the doc to hold on, she would go to the icu floor and speak to the charge nurse.  She came back within 10 minutes with a room number.  The second miracle.  The transfer was made, and our son was put on life support before it was  too late..

Tuesday~day 16

Yesterday hospital administration told us that our health insurance would no longer cover Jethenros' stay here...and we began the procedure to transfer him to the hospital that we know is covered.  When the director of the ONC team was notified about the transfer, he got on the phone and pulled strings with the insurance company and the administration of the hospital, and came to tell us personally that Jethenro would NOT need to be transferred and that this stay would be at least mostly covered. We praise the Lord for little blessings.
Fevers plague Jethenro as his defenses hover at 0. This is what keeps him in the hospital. We hope that this does not continue through the rest of this block (re-induction phase).
Prayers are deeply coveted.

Bone Marrow Donation

1. Jethenro will need a bone marrow transplant.

I have had many people ask about being tested to see if they may be a match for Jethenro in case a member of his immediate family are not a match.
The best way to do that is to go to "United Blood Services" near you and let them draw your blood for testing. Tell them you are wanting to donate to Jethenro if you happen to match his hla.
What is hla?  This is what needs to match for a successful bone marrow transplant. Blood type does not matter.

1. Human Leukocyte Antigens
2. A: Human Leukocyte Antigens are the human form of MHC and are proteins located on the surface of white blood cells and other tissues in the body. HLA antigens play an important role in the immune system's defense against invaders such as bacteria, viruses and parasites

Monday~day 1 of(15)

Jethenro spent 14 days in the hospital where he was diagnosed with relapse.  He spent one night at home, and spiked a fever of 101.3* the next morning.  Because of relapse he has been admitted to the ONC  hospital where the ONC team has most of their patients. His ANC is 0. WBC's are wiped out. It appears that he will be here a few days.  When his wbc's get so low he has a fever, and as long as he has a fever he will be in the hospital.
We have been in two different rooms in the PICU since he arrived yesterday afternoon, and it appears he will be transferred to yet another room on the regular ONC floor in a few hours. The ONC unit had been closed over the past week because there were no patients..

They gave me a real bed last night ~just like Jethenro's !
One of the 'little' blessings. 

Today...

Jethenro is still in hospital.  We are hoping he gets discharged today, but won't know until evening or night. He gets heavy chemo today, and because he had a reaction last time, he will be pre-medicated and watched closely.

'Mom' has not been updating here...but need to let you know if you have not heard already.  Jethenro was diagnosed with  relapse on June 7, 2014.  He has been in the hospital since then. Chemo begins all over again. Except this time we diligently search for a bone marrow match.  As soon as one is found, he will get the transplant and be able to stop chemo.  Please pray that one of his sisters is a match. I don't know if i will be able to keep updating on this blog.  There is no internet at the hospital and I am there 99% of the time. He may not get to come home for quite awhile.

Last Week

When we began this blog two years ago, I thought it would be a family venture of posting updates along the way...but I (mom) seem to have taken over the posting updates.  I mentioned this to Jethenro, and he just smiled...after all he is in nursing school!  lol... With both sisters away at college, they don't get in on the day to day happenings at home. That means you have to wait for updates until I get a chance to post them!  ;)

Last week Jethenro had another lp, beginning another cycle of his 3 year Maintenance phase. The countdown is on...he has 8 more months of chemo.  I am already helping him plan his 'off treatment recovery program' that will protect or heal any possible undetected  organ damage that might have taken place.

There is a new Dr. in the clinic that has done Jethenro's last two lp's.  She was also the one who treated Jethenro two weeks ago when he was so sick. I have been impressed with her bedside manners, and her clean/close to perfect lp sticks. The nurse happened to make a comment this week about the dr, and her own cancer journey.  Come to find out~she had the exact same type of leukemia when she was 12 years old!! No wonder she perfected her lp's!  She understands!  That explains her bedside manner techniques!  I practically cried as we discussed her experience. What a blessing to have her on the team.

Jethenro has been on antibiotics quite often over the past 9 months for sinus/upper respiratory infections and I was pleading with God to help us know what might be causing the frequent infections that seem to be getting more and more frequent and severe. The Pediatrician mentioned that this is related to allergies, and we weren't too sure he was right until...This last week I was impressed to have our reverse osmosis water tested, and discovered that the system  is not working, as the water came back the same as regular tap water. That night as I lay in bed praying, it occurred to me that the chemicals and contaminants in our city water are ones that Jethenro has reacted to on other occasions. I am hoping, and continue to pray that this will be the key that keeps him from having any more infections that require antibiotics.  

The serious 'I just woke up' look

Eventful 'Yesterday's'~Catch up

We spent most of yesterday here...

Hospital  "ready" bag came home~with Jethenro

Jethenro took trip shortly after Christmas with his sisters and met up with many other young people for a special youth conference in Florida. It was a memorable experience for him, yet he arrived home with a sore throat and a slight fever.  Off to the pediatrician the next morning yielded a round of antibiotics while on a chemo hold. He experienced healing, and was able to continue life as usual.

But this past week he started having upper respiratory infection symptoms and by Wednesday had a slight fever that increased as the day wore on.  He came home from school early and went straight to the pediatrician who tested for several different illnesses and  once again put him on an antibiotic~a different one this time.

Yesterday~Thursday morning he woke to a 102.2 fever.  This warranted a direct admit to the hospital previously, but we could not get hold of a nurse at the clinic, so Jethenro and I got ready to go to the Cancer clinic personally. When we arrived he was quickly put into an examination room where we waited for a very long time. The Dr. finally came in and checked him out~ordered iv antibiotics and fluids, a port access blood check for infection and possible sepsis along  with an ANC count.

Then there was another very long wait before the nurse came in with all the paraphernalia. The office was short one nurse, so the nurses were very busy....I don't think they even took a lunch break...
The nurse got a little agitated when he discovered know one had taken Jethenro's vital signs. He went and got the equipment for that, and discovered Jethenro's temp had reached 102.7

We are grateful for his healthy ANC count of 2910, for that shows that his body is fighting the infection on its own....and it was determined that he could come home after the iv antibiotic was infused.

What a relief!  Thank you to those who knew and were praying for us yesterday.

This morning Jethenro was supposed to go to clinical, but he knows his health is more important, so he is home studying in the easy chair next to the fire instead.

 

Snapshot

The launch of a remote controlled plane