IT is HERE!

Anybody know what this is all about?  

{Thank you to those who made this project possible~}

 It has all finally arrived just at the right time~after his final test.

Stay tuned for more information.

Snapshot

Caught in the act

Another Clinic Day

Yesterday Jethenro went into the clinic for a blood check, iv chemo and lumbar puncture. The procedures all went as predicted.  His ANC is 540~a little too low for my liking, but within expected range, so no change in oral chemo dosages.  However, the clinic failed to send in the prescription, or give me a copy in hand to hand carry to the pharmacy of  a particular med he is supposed to take alongside the iv chemo. I even stood around and waited for the Rx~but was told it would be done electronically.  Many phone calls between us,the pharmacy, and clinic have continued since leaving the clinic building yesterday.  Jethenro has missed two doses already. It looks like the Rx will finally be ready this afternoon~  Not  pleased at all  that we had to be so aggressive. 

Jethenro has been tired but attribute it to a busy weekend. 

Snapshot

Dont they look scrumptious? 

Jettie has almost been craving salads these last couple of weeks. Due to having a couple of new nurses in the family he was off fresh fruits/veggies while he was severely neutropenic or at risk of being so. The ONC team never told us he couldnt have such food but  Jettie's paranoid sisters recited well what was learned in nursing school ;) Once he reached maintenance levels the salads came back in full force. As far as I remember Jettie never had a great taste for salads. Oh, he ate them but they werent his favorite. Now... it's a different story. Salads are on the menu everyday. He just cant get enough :) 

Snapshot

Jettie and I finally got the bikes out, pumped up tires, and readjusted rusty brakes and headed out for a bike ride.  We have been having absolutely beautiful weather here the past couple of days. Perfect bonding moments :)

Together...As a Family

This isnt normal. We are eating meals together as a family again. We have all been in church together as a family for 3 weeks in a row. We have time (and ability) to go to the beach together as a family. 
No longer are we getting up in the morning and rushing to get to an appointment at the clinic. In fact, Jethenro hadnt been to the clinic in 2 weeks until yesterday. And even yesterday his visit was simply for a lab draw.

These past couple of weeks have been incredible. Jethenro has had so much more energy now than he did even a couple of months before diagnosis. No longer is the couch being sat on. Instead he is at his computer, doing homework, talking cars with friends, running PA/AV at church, texting me as I am getting off of work asking if we can go bike riding when I get home. As one friend put it... "It's like you were never gone."

Sunday afternoon my dad and I were off work (we were supposed to go camping but it didnt work out) and decided on a family day at the beach. Both my parents and Roshi and I went once at separate times after Jethenro's diagnosis last summer but Jethenro hadnt been out to SPI since before he was diagnosed so it definitely was about time :)

.:.Genuine Smiles.:.

.:.Roshi had a test and spent most of the time studying for it.:.

.:.Mom: "What are you doing?"

Us: "We are digging a hole. Looking for a crab" lol.:.

.:.Sunset over the lagoon.:.

.:.Watching the sunset.:.

.:.Sunset.:.

God is good. All the time. These past 9 months have not been easy but God has blessed and blessed abundantly.

Caught in the Act #2

Was he inspired last weekend by watching others on their ripstik? You can decide.

I know he got his heart rate up in just a few minutes~and used muscles that he hadn't used for a long time....

A New Normal

 Jethenro had a clinic appointment earlier this week for the chemo and lumbar puncture that had been postponed due to our weekend travel.   It will take a little while for the ONC team to adjust the meds to meet the desired defense levels thru maintenance.  

We can now get accustomed to attending church as a family again, and Jethenro becoming involved in more social gatherings.  There is a caution as he is and will be immuno~surpressed throughout the next 30 months, but it will not be as severe as the past 9 months have been.  There may still be times that he might refrain from certain activities due to lower then 'normal' defenses. 

Our hearts are full of gratitude to the Great Physician who has protected Jethenro thus far.     

Gods Timing is Perfect

We made plans to attend a Family Camp, and sent in our registration forms all while Jethenro was still in the hospital.  It was our prayer that if it was Gods plan for us to attend, Jethenro would have regained his  defenses to handle the trip. God granted us this time to refresh and renew our spiritual batteries as we spent time with old friends and made new ones. This was just what the Heavenly Physician ordered for our family~ just at the right time ~as Jethenro goes into his last, but longest phase of treatment. In Jethenros words, "This was a good transition."

State flower making the drive a beautiful experience.

Each took a  turn driving

Having to watch Freeze Tag was a new experience...

Blessed with accommodations that fit our needs

Giving announcements at one of the meetings 

A Popcorn~watermelon supper on Sabbath

Enjoyed the view

Jethenro canoed for the first time since May 2011

It is Official

Today Jethenros blood draw shows that he qualifies to begin chemo again.  His bone marrow has fully recovered from the last phase.  This means that he will begin maintenance mode~for the next two and a half years. He was scheduled to have an 'in clinic' chemo given today, but due to our travel plans, the ONC team have postponed those until we return. He begins oral chemo immediately.

A Day To Remember

This was the first time we have had company for a meal since Jethenro was diagnosed in June, 2011.  He has been feeling better each day as his defenses improve, and thought it would be good to start getting into a 'new normal' after all the hardships he has been through. The sisters did the cooking, and we gathered after church. Great fellowship!

Dessert looked and tasted awesome!

Caught in the Act

There were errands to run one day, and Jethenro was 'Home~Alone!'  When I walked in the door, I discovered the piano was on, and that he had actually been playing it!  He willingly played a little more, to humor me.  It was truly music to my ears.  One of the chemo drugs makes his fingers tingle and affects feeling in them, so has not been actively playing for some time.

Blood Check

We went to the clinic today fully expecting Jethenro to qualify for the next round of chemo.  However, his bone marrow is still re-cooperating from having no defenses.  Last Monday his ANC was higher than it is today. But that was because he had been receiving recovery shots in the hospital, and it was not his natural defenses working for him. The lab results today reflected that his bone marrow has indeed started working.  His ANC is 730. He did not need any trasfusions~and we hope it stays that way. It has been 4 weeks since his last chemo. 

Blood Check,Rest and Grateful Spirits

Jethenro had his blood drawn yesterday to verify that his bone marrow is functioning and to see if he needed any transfusions.  So far everything was looking good, though his platelets are on the low end. We will be alert to any signs of bruising or bleeding over the next few days as his next blood check is scheduled for Monday, and he may need a transfusion before then. All are hoping that he will produce his own now, and that he won't need another transfusion.  He had an allergic reaction to the last two platelet transfusions while in the hospital.  The Dr's ordered a special blood test as Jethenros defenses had stayed too low for too long, and will wait for the results to adjust his meds through the maintenance phase. 

It is wonderful to have everyone home~mom is sleeping better having her big kids tucked into their own beds   ;)   I think we are all getting a little more rest...

I can't find the right words to express my gratitude for everyone of you who have  stood by our side through this journey. Just yesterday a dear friend dropped off a crock pot full of  her famous chili.  It was such a blessing as I had been running all day and not had time to cook.  Several church members have cooked or baked for us periodically~then there have been the many visits and connections with friends that Jethenro has been able to maintain  throughout the months either through e-mail, skype, or texting.  The many cards or poster we have received  lift our spirits and give us courage.There have been financial gifts too that have come just at the right time... Above all the prayers you offer on our behalf have been the strength that holds us up, and carries us through.

We have experienced the joy of true  Christian friendship. 

Thank you!

A portion of a wall in Jethenros room is reserved for cards. 

HOME!

We brought my son home from the hospital today.  Twenty one days... It feels so good to have him home.  Now we all can get back to our routines.  There will be a new normal around here as the intense cancer chemo days are finished and Jethenro heads into the maintenance phase of his treatment. We got to know the nurses as family and are always grateful for their commitment to the care of the cancer kids!

We got teased that we should set up a tent...no we didn't all stay every night.

Reading the solution to the puzzle.  That was a fun gift!

The great sibs spent alternate nights with Jethenro

Lookin' good~even in the hospital!
FYI: The surgeons response to the port a cath issue is to leave it the way it is 

Aaaand it's not what we were quite expecting...

We are still here in the hospital at least for one more night. All antibiotics and medications except for the GCSF (neupogen) have been stopped so that is a praise. Jettie had a repeat chest X-ray done this morning and it showed his port line had done some more acrobatics so the oncology dr asked if we would be on with spending another night so that the surgeon can be consulted in the am. Jettie made the decision to stay because it is either do it now or do it later. Pray for the decisions that will be made in the morning!

Smiles

from us to you!

For hopefully the last night ever in a hospital room :)

Day 17

The sun sets as another Sabbath begins.  This is the third Sabbath Jethenro is in the hospital.  He has not had a fever since Wednesday, the day his bone marrow appeared to wake up and start driving his defenses back up. We have much to be grateful for.  All the tests that have been taken to determine why he had continued fever have all  come back negative and Jethenro has been taken off of a few hard core antibiotics.  This has been an answer to prayer, as there was talk of needing daily infusions for 21 or more days. This would mean either home health or going into the daily infusion center of the hospital. We have a trip planned the first part of April, and that daily trip to the hospital for an infusion would have interfered .  There has been a lot of rejoicing today as we keep getting good news.  Jethenro's ANC more than doubled since yesterday, and the WBC  inches up little by little, day by day.
The Doctor  says that it appears they need to study Jethenro's protocal, as the chemo drove his defenses to 0 for much too long. Future dosage of that particular chemo may be cut in half or more.

*****************************

For the first few days, Jethenro slept or rested a lot.  As he felt better, he began watching tv, and a few days this week he has done some schoolwork as well.  He does not enjoy reading for pleasure~but we are working on that ;)

Update~Day 15

Jethenro has been in the hospital for 15 days now.  He is on 4~5 antibiotics and still don't know what they are treating, as all the tests are coming back negative.
A Pulmonologist was consulted, and the tests this doc ordered have come back negative.  The Infectious Disease Physician ordered an echocardiogram to cover anything else they might have missed.  Everyone is a little baffled as  what has been causing Jethenro's spiking fevers. Last evening the fever went up to 100.8, but came down on it's own. All day today so far he has had a normal temperature.
The good news is that his defenses are going up! For the record~ His ANC =120, his WBC=.4

Day 13

Another day in the hospital. I made a mistake at recording the ANC yesterday.  It was 3 instead of 30.  Today it all has improved a little~ up to 15~tho the low fevers seem to continue~and spikes in the evening. May just be related to his defenses since there are no other symptoms and all the tests are coming back negative.

Day 12

Jethenro is continuing to have low fevers that spike in the evening. There is some discussion about further testing to see what might be causing the fever.   He is having another platelet transfusion today. We continue to do what we can to jump start his bone marrow to begin working on its own. This is a common occurrence  at this stage of his treatment plan.  Pray that this event will happen soon. His ANC is 3 today, and WBC is .1

Same Song, 11th Day

It is a quiet Sabbath in the hospital.  The internet is very slow, so no watching or listening to sermons on line.  Instead we watched a DVD on Bonhoeffer's life.  Helps us to contemplate our own Christianity, and our relationship with Jesus... and the level of commitment.

Jethenro got to walk in the hallway today, and I notice some commotion in the play room.  When I peeked into the room, there were some college students out creating cheer.  They later walked by our room, gave Jethenro a present and I snapped a picture with the 'doc'. 

Because of his 0 defenses, Jethenro wears a mask outside his room.

Jethenro was put on contact precaution, so his dad is modeling the nurse attire. The infectious disease controller in the hospital wanted us parents to wear them too, but the Dr. says it is not necessary~he has been on antibiotics long enough, Jethenro is no longer contagious. However it does protect Jethenro from catching what the nurses might carry into the room.

Here is the cute little gift he got.  Even cookies in the  cup to reflect the Irish green.  Really cute and thoughtful.

Day 10 in Hospital

Today Jethenro's WBC count remains critically low~0.2 for those of you who understand the scale.  His ANC is 0. Antibiotics are keeping the infections at bay~so we don't really know all that he is fighting.  His fever stays around 99-100 during the day, and increases some in the evening.  Every kind of test that can be done to find the source of fever has been ordered.  We are convinced that it is his body reacting to such low defenses. 

He has been receiving nupogen (a WBC booster shot) daily, and are just waiting for his bone marrow to begin working again.  As long as he has a fever, he will remain in the hospital.

and it continues...

Fever spike of 103 yet again last night.
Stronger antifungal was added, and more antibiotics are added. He's maxed out on antibiotics....too many to count now! ;) Cultures are still coming back negative, so we still have no idea what we are dealing with. Many of the culture results won't come back for several days anyways. So we continue the medications until his defenses are higher.
They did a CT scan, didn't show anything to be worried about.
Neupogen is sloooowly bringing his WBC's up. Still at 0, but went up to 0.3! haha, well, at least it's going up... Pneumonia is gone, and the infection in his blood is gone (still continuing the antibiotics though)
Blood transfusions yesterday, platelets today.
He's feeling a little bit better today, still has no energy and no appetite though.

First Time in a Week

98.6 !

(under the influence of tylenol~but we are excited)

Day 7

...and still having the spiking fevers...  

It is obvious that Jethenro is fighting more than  mycoplasma and C-Dif.  Please pray that further tests they are taking today will reveal what he has.

Even though Jethenro has been receiving a 'defense booster' called neupogen, his defenses actually dropped  today. 

They are starting an anti-fungal medicine while they wait for the results of the tests. Just praying for answers~and soon~ 

Another Challenge

Jethenro had a chest x-ray done yesterday to verify the possibility of pneumonia.  The pneumonia came back negative, but a 'convenience' to the x-ray was to find that once again his porta cath tubing has moved out of position. There is a blood return, so it can be used for antibiotics and blood draws.  They  will wait to check it again  when he has to get chemo again.  But really!  Hasn't this been enough already?
  

We are... Still here!

Jethenro has been diagnosed with Mycoplasma which is the same as 'walking pneumonia'.

He also has a bacterial infection called C-Dif in the intestines that has been caused by the antibiotics he is taking.

Both are quite contagious. This is the sign on his door:

The Doctor says he can go home when he can get in 24 hours without a fever which  is still bouncing up and down from 99~103. 

Friday Facts

From the last couple of days; in no particular order.
1. Still in hospital
2.Fevers still bouncing from 99-103
3. Blood Infection detected
4. On a new/stronger antibiotic
5.Two units of blood ordered.
6.One unit of platelets ordered.
7.ANC (defenses) 0
8.Blood pressure fluctuations
9.Some cough and headache associated with infection.

All associated with the chemo drug he was given ARAC or  cytarabine
 

...and then...

I woke early to get to the hospital to pick up Jethenro this morning. Nitha had spent the night with him. The medical team were encouraging him to eat some breakfast before walking him to the car.  I suggested checking his temperature since he mentioned feeling like he had a fever.  It was at 99.8 before we left the hospital. By the time he arrived home it was above 102.  A call to the clinic and a turn around landed Jethenro right back into the room where he received his transfusions.  By this time the temp registered 103+.
He is getting an i.v. antibiotic, and blood labs have been drawn to determine the source of infection. He didn't make it through this phase without an infection attack after all. His ANC (defenses) did go up a few notches with the transfusions he received.

....stay tuned....

Drama!!

Today was a scheduled chemo day.  Jethenro's appointment was early afternoon, so the morning was spent getting breakfast and other little chores accomplished.  However, Jethenro was not  hungry~and maybe it had something to do with bleeding gums.  Last night before going to bed we knew he had some  blood blisters in his mouth, but knowing he had an appointment at the clinic today, we went to bed, trusting God to protect him through the night. He woke feeling fine. However after he had been up for a short time, his gums began to bleed. That is a sign of low platelet counts. I called the clinic, and was just told to come in a little early for our appointment.  He still received chemo, but his blood counts reveal that his ANC (defenses) = 0.   I pray for his protection!! I believe that God has special immune protector angels just for him.
We are currently in the hospital, waiting for blood and platelet transfusions to begin...hoping that this will be the last time we have to do this.  This is the last hard phase of treatment they say~and Jethenro has one more week.
That was the normal part of our day.  The other part is that I slipped and fell very hard on the floor, cutting my face and breaking my glasses~ Really??? I don't have time for this!! I was so grateful that Roshi was home, and able to apply her nursing skills to 'put me back together'! I then had Donald look at it later, as he works close to the cancer clinic. He says it does not need stitches.   Fortunately I can use my broken glasses, and can postpone fixing them until tomorrow.

~ once again I learn to adjust~  

Todays news

I am sitting with Jethenro in the PICU unit at the hospital. His blood check today at the cancer clinic revealed that he was just on the borderline of needing a transfusion. They gave him the choice. We all knew his hemaglobin will just continue to drop over the weekend, so let's just do the transfusion today.

We have been to the clinic 4 days this week for chemo. This was the last 4 day schedule. We hope we don't have to ever do this again.

Jethenro has an ANC of 20. This means very, very low defenses. We would ask all you prayer warriors to join us in prayer that God will cover him with his feathers and protect him from any sickness.

***************

Jethenro was home from the hospital by 8 pm 

Discharged!

Jethenro was discharged from the hospital at 6 pm yesterday.  He was able to sleep in his own bed last night. But it was up early to the clinic this morning.  He is tired and resting now.

Update...

The Oncology Director has canceled the CT scan with contrast.  He is not concerned about it under the circumstances.  The clot is only from the misplaced portacath, and will dissolve on its own.  We have a follow up appointment at the clinic tomorrow...along with more chemo and an LP  (lumbar puncture). We are grateful, for the contrast cancel for it would just mean more chemicals in the body that we don't want...
Now we are waiting to see when we can take Jethenro home~

surgery...and now a clot

Well we are still in the hospital! Last night's fluoroscopy showed the need for surgery, so surgery was scheduled and Jethenro and Roshi prepared to stay the night. It was a long night, not much sleep at all...

Early this morning he was transferred to surgery, where the surgeon had to totally remove his portacath and insert a new one. For those of you who don't know what that is...in simple language, it's a tube that can deliver medications almost directly to his heart. So surgery went well, no complications....we thought.

Got back to the PICU, and the Dr. ordered an ultrasound of the veins in his neck (where the previous "tube" (catheter) had moved to) to make sure there wasn't a clot left behind. And can you guess what they found?

Sigh...yes, a blood clot in his Jugular vein...At times, invasive procedures or "foreign" things in your blood vessels can cause your blood to coagulate and form a clot. 

Next step is a CT with contrast to find out more details about this clot. Until then, we wait...and pray... :)

Clinic to Hospital

The morning was spent mostly in the waiting room at the clinic. The entertainment included a couple of clowns visiting those sitting in the waiting room. They were so cute I had to take a picture even though it was with my phone... and the lighting awful... 

Jethenro qualified for therapy, so off to the hospital we went.

But things are not going as planned at the hospital.  It was discovered that his port a cathe has shifted, and he will need a new one installed before he can receive more chemo.  So we are in limbo while a well kid sits in the PICU unit overnight and waits for the surgeon to decide what to do and when. 

To be continued....

Clinic Appointment

Jethenro is scheduled into being one of the first ones  at the clinic tomorrow morning. If he qualifies for therapy, it will be a long day. Pray that he makes it through the next 3 weeks without complications or long or short term side affects.

Like Son~Like Father

The votes are in: The son has the 'better bald'

Hospital? Or not!

The morning began early~as getting ready to go to the hospital requires a few extra steps on clinic visit days.  But I really didn't know what the medical team had planned either, since they were going to try to work around the Tues. afternoon class that  Jethenro has in the classroom. The NP and I had a little discussion about the situation when we arrived which included the absence of one oral medication that he will need.  It appears that some types of chemo drugs are getting hard to obtain, and according to the local pharmacy that supplies the clinic, this particular one is not available today. Hmmm~been through this before.  We will discover the outcome later this week.

The results of  Jethenros lab draws showed that his defenses were too low to begin therapy anyway! So he gets another week to recover. And we get another week to relish.

Something new...

With the hair fallout of the last few days, Jethenro toyed with the idea of buzzing what was left on his head. His hair had not fallen out as evenly as the last time around, so today he decided to shave what was left, and then as it grows back, it will grow in more evenly.

My handsome son

*********

Tomorrow he will have a blood check.  If he qualifies at 750 ANC (defense counts) or above, he will go to the hospital for chemo, but will be there less than 24 hours. This will be the beginning of two rough weeks. 

We all have savored the week he has been off of chemo. 

Hair Where?

In the shower drain~in the sink~on the pillow~on the floor....Yep~the hair is falling out again. But that is ok~ for Matthew 10:30 and Luke 12:7 remind us that there is Someone who knows the count of hairs on his head and is carrying Jethenro. (Isaiah 46:4)

********

Jethenro is enrolled in three classes. Two are on line and one is in the classroom that meets once a week.  Please pray that his mind will be clear as he studies and attends class. Also that he remains healthy~spiritually, physically, and psychologically as this journey continues.