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 

Snapshot

havin'  cuzin' fun time

One.More.Year.

Next month begins the last year of chemo treatment.  

School has taken over Jethenro's life.

Taken on first day of clinical

 He continues to battle sinus drainage and unfortunately it has turned into a cold.  I(mom) is battling it with vengeance, and hoping my tactics pay off.
;)

Seasons of Life

Armed~ready for battle with a dog that tried to bite his aunt.

We have been going through adjustments this fall, with Jethenro full time in nursing school and both his sisters away at college now.  No more relying on his siblings to make decisions for him...

It appears that he has been fighting allergies, but not to the point of needing antibiotics or other strong intervention....yet. We hope it stays that way!

Each month he continues to go for in clinic chemo, and periodically that includes a lumbar puncture.  It is hard on his mamma to watch him have to endure those over and over again.  But, looking at how many he has left to face~he is almost to the finish line.

With grateful hearts, we approach each day with praise that he does not seem to have any chemo induced damage to his body.  We strongly believe it is Gods hedge of protection,  and  prayers that help him to endure this journey.

Summer Activities

The summer has flown by quickly.  Jethenro took some summer classes and generally took it easy. The allergies subsided after the Dr. listened to what we knew he needed, and prescribed the right medication.

N. came home from her summer job and spent 2 weeks before heading back to college~taking R with her this time.

We packed as many activities as we could into the few days we were all together. 

Visit to a local ranch

Trip to the beach

Choosing to publicly demonstrate his commitment to a life with Jesus.
It was a special day with his sisters in attendance.

Snapshot

Hunting for a geocache using GPS

For the Record

Jethenro has been plagued with increased environmental allergies this year.  Sinusitis has hit him hard. Other years, he has been able to push through a couple of weeks, but this year the symptoms are hanging on longer than usual.  One round of antibiotics in May helped, but the symptoms returned within a few days after the last dose.  Natural remedies are helping some, but not enough. And with home remedies we have to be careful because some herbs/plants interact with the chemo he is on.

It also appears that the local pediatrician and the Oncologist have had some opposing positions on what to do. Oncologist wins of course, even though he has not seen my son personally in more than 4 months.

My immediate job~research like crazy~do what is best for my son~and be very informed the next time I speak to anyone on the ONC  team.  I am quite frustrated with them today.

*Micro*Biology*

Gifts to thank his lab partners

"in lab"

recording info in lab notebook

Jethenro was registered  and  in his first class period for microbiology. We had already been discussing what equipment he would need for his lab class~like goggles and a lab coat. Then a light bulb came on... How could he be exposed to all of those microbes and bacteria while being immuno~compromised? He texted me from class when he recognized the situation.  I almost went into panic mode.  How could we have overlooked that very important issue??!   He spoke with his teacher after class, and got a list of the "germs" that they would be working with during lab. She assured him that she would do what she could to work with him, knowing his compromised immune system.

He had an appointment for in clinic chemo that week, so Jethenro took the list with him for the ONC team to view.  Wow did he create a buzz at the clinic!!  There was a special meeting called while he  was receiving chemo, and by the time we left the office he had a letter in hand stating that he was not allowed to be exposed to those microbes until 6 months post chemo treatment.

Armed with  the letter Jethenro went to his first lab.  The teacher had expected that response, and already had him paired up with lab partners that would do the work 'in lab', and send Jethenro all the pictures of what they were working on, complete with instructions on the board that she had given. All through this experience I was praying, for he really needed this class now to continue his career goals. I don't understand all the techie stuff, but those lab partners were able to give Jethenro the information he needed to 'be in lab' at home to be able to do the work on his own and in his own time frame without ever coming in contact with the dangerous microbial germs in the lab setting.

Today was the last class, and micro lab days are over.  Jethenro most likely has an A.  What a blessing his lab partners were.  Especially one called 'Juan'~the one most responsible to make sure Jethenro got the info he needed....and he did it without internet at his home.

Blessings! Thank you God!

.

Snapshot

sorta new hobby

A few years ago Jethenro and his sisters became interested in a new hobby called

GEOCACHING 

It is a free real-world outdoor treasure hunt. Players try to locate hidden containers, called geocaches, using a smartphone or GPS and can then share their experiences online.. 

(description from the official website)

 But the interest waned when we did not own  a reliable GPS, and could not locate any geocache sites.

Now that he has a reliable GPS, and the interest in searching, he decided to pick up the game again.  

On Thursday he had an appointment to get a blood check, and I  needed to run some errands. He had pinpointed a few places on his gps, and he found all 5 he was looking for.  It is kind of exciting to find one, and see what little treasure there might be in the container, and sign the log book.

Boyz Toyz

Even though Jethenro had in clinic chemo on Thursday,he was ready to have a little fun with a friend today. 

Making Sa*mosa*s for class

Jethenro's wellness class had an ethnic food potluck.  He engaged his aunt in helping him make enough for his classmates~with some left over for the rest of us to enjoy. They didn't last long.

something new~something old

Jethenro has just entered into his second year of maintenance ~ which is the longest phase of treatment that lasts three years.  For the next two years he will have fewer lumbar punctures.
 There are days that float by that we don't think much about the battle he fights.  He feels good, looks healthy, goes to school, does his homework, excersizes and enters into activities with friends.  Know one looking at him would know what he has been through. However he is aware, and takes precautions when necessary.

For the record, this past weeks blood check showed his anc was 560~ a little on the low side.

He decided this week to try something new~to cut his hair short, the way  it was at diagnosis. For the past year he has kept it a little longer~just because he could! His sis had the honor of being his hair dresser.

Another sibling activity was to wash the very dusty cars.  We have  not had rain in a long time, and the wind blows dust everywhere.  The almost new toyota corolla my daughter just purchased at a very good price really needed a bath, so the cars lined up to get their turn  ;)

Thus ends the week of something old~something new~ or is it vise versa?

One more~one less

notice the sign on the door~lol

This weeks schedule included a visit to the clinic for chemo.  It proved to be an interesting appointment.  The clinic is a satellite office connected with Childrens Hospital and Baylor University in Houston. They have been sending in a visiting Pedi Onc Professor from the pool of Dr's over the past few months since the Nurse Practitioner left her post with the local clinic.  Jethenro's last two lp's have been performed by these visiting physicians.  I observed the doc and was very impressed with her technique and bedside manner.  I learned that ALL was her specialty, and we had a good conversation on where we have been and what to expect in the future.  I had read recently some discouraging statistics about reoccurring cancers and organ failures in later life. She assured me that those statistics did not include ALL patients. She was impressed with Jethenro's over all health, and that he was heading into the medical field of study in college.

A little chuckle we had was that the nurse almost sent Jethenro home without giving him VCR(chemo through his port) and de-accessing his port. The visiting physician does her lp routine a little differently than the regular docs, and this threw the nurses routine off also. I wished i had my camera ready when she realized the mistake.

And the sign on the door made us laugh too.  The clinic is set up in a temporary location while the regular clinic location is getting a face lift.  Jethenro was the 'office manager'.  I asked the nurse if that gave him the authority over the nurses...and their mistakes. We have grown to respect and interact freely with this medical team. 

Whatever way you want to look at it~ Jethenro has one more lp behind him, and one less to endure. Looking forward to the end of all this chemo.

Snapshot

Shooting a wedding 

half way~with a look back

before diagnosis~so pale

A memorable trip~ just before diagnosis

Anointing Service just after diagnosis

Ambulance ride to the airport

Qualifies for wish to be granted

attending a Christmas party 2011

laporotamy incision

19 units of blood~13 units of platelets over 9 monthes

needle biopsy to determine possible infection

welts from toxicity

watching a movie together

supreme team sibs

our second home

newest family member

walking is always easier with friends around 

hair had gotten so thin~he chose to take it all off

and dad followed for support

first road trip

needs something to do...

build a computer! all parts were donated.

fun in the sun

making music together

We are looking at being about half way through Jethenro's treatment for ALL. Looking back I see so many blessings through all the bumps and curve balls that have been handed my son. He continues to be an inspiration to those around him. Thought I would post some reminiscing pictures to remind us of how far he has come

Thank you all for your prayers and support