...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.

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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

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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)

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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.