...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. 

Clinic Day :)

Guess who got to take that happy boy to the clinic today? Thats right! The happy girl standing next to him ;)

Between GYC and a trip to DC with Roshi to visit our dearest Aunt, Uncle, and cousin I havent been to any of Jettie's appointments for well over a month. When I realized he had an appointment today and that I had the day off I was more than a little excited to be able to accompany mom and Jettie to the clinic. In the end Jettie drove me to the clinic while Mom went and did some shopping. Knowing my mother I know she probably had some qualms about Jethenro getting chemo without her there but she trusted the 2 of us and after making sure we knew the medications and dosages Jettie was getting she sent us on our way. 

The clinic Jethenro goes to is a teaching clinic and as such Level 3 (the level Roshi is in) nursing students at our community college get to have a clinical rotation there. Today 3 of Roshi's classmates were there and got to access Jethenro and observe chemo administration. 

So far this evening it seems that Jethenro is feeling much less exhausted after this round than he has the last 2 weeks. The rest of this week and next week he will be taking steroids and then goes back for chemo on the 7th of February. Thank you for your continued prayers for Jethenro. Please pray that he stays well through the rest of this phase!

Thank you Mommy for letting me take Jettie to the clinic today - I loved the sibling time :) 

What's for Lunch?

This is a question I am hearing lately~an hour after a good hearty breakfast! Some of you may remember noticing a lack of appetite this past spring while on our travels~ or  a mention of it a few times during the front line treatment when Jethenro was losing his muscle mass weight. Just for the record, he has gained all the weight back that he lost,(not necessarily muscle mass...) and the steroids that he periodically takes has encouraged an appetite. I am grateful to hear this question~even though he knows the next meal will not be ready for a few hours.

Quick Update

The chemo Jethenro had on Tuesday has wiped him out again.  He has been laying on his bed most of every day. His defenses have been "good" due to the steroids he was taking for a week.  Now his defenses will be dropping~which is the target~to go into immune suppression before building his defenses back up.

I knew it was going to be a couple of hours in the infusion room on Tuesday, so encouraged Jethenro to play some table games with me that were on a shelf in the play room.  His nurse overheard me talking about it, and came with an armload of table games to choose from found in another area~brand new ones!
She let us choose which one we wanted, and then went to the three other teenage kids in the room getting their hour+ long infusions.  Soon we could hear the laughter and lively discussions coming from different parts of the room as each family played games together.  The nurse said to me~ "I never thought of offering this before."  It made for making a bitter experience into something better. It was uplifting to hear the table game chatter coming from different parts of the room.
To top it off~as we were leaving the clinic, the nurse gave us the game for keeps. I thought I took a picture of Jethenro playing the game, but can't find it now~so here is the after we got home picture...

~We now have two games~

We will pay this kindness forward when given the opportunity.

~Found~ the picture from the clinic! Is that concentration...or...?

Words from Mom

This originally was going to be a place for the whole family to share our thoughts and news of this cancer journey~however, I do most of the posting on here, so think it is ok to post this here. It is written by a new friend of mine who happens to be on the same kind of journey~She says it so well~ 

I Am a Cancer Mom

I am not a soccer mom or a hockey mom, though I dare say I am as tough as any of them, maybe even tougher.  But I am not bragging.  Although I spend hours on the road transporting my children to events, I do not take them to practice or games. The events my children participate in are more of the life-or-death nature. The competition is fierce. There is no practice for the contest we are involved in.  We have been thrust into the fight without practice and without warning, and even without our permission.  We meet with our team and coaches on a regular basis, sometimes as much as five days a week and for hours at a time, sometimes all day. Sometimes we must live at the facility where we have around-the-clock assistance from our team and access to specialized competition methods.  I cheer them on, but not from the sidelines. I get right in there and fight, too. Sometimes I have to wield the instruments of conquest.  It is all blood, sweat, and tears; my child’s blood, my sweat, and all of our tears. So far, we are winning, but the fight is far from over, and the tide could turn at any time.  Vigilance is vital.  To let up, even for a day, could be the difference between victory and defeat.  We are in hand-to-hand combat, so to speak; my hand tightly holding those of my children and husband, and I’m not letting go. I am a cancer mom.

© Heather Page 2012 

Thanks Heather for allowing me to share this.

Christmas in January

Here Jethenro is putting together his Christmas present.  He received money from relatives to 'upgrade' his computer status.  He researched what would be best, and chose a 32" screen that can be used with computer, dvd's or tv.
He was also able to purchase a wireless keyboard so that he can use it with his large screen, and does not have to have the computer in such close proximity.

Now he is talking about and researching the prospects of building a computer~and getting new speakers~ ~His learning interests are shining through~

being used in service for God and others.

An Interview

Representatives from M*ke a W*sh Foundation came to our home to interview Jethenro and his parents.  Because leukemia is considered a life threatening cancer, he qualifies as a candidate to have a lifetime wish granted.  Ideas were bounced around and the representatives left with an idea of what Jethenro's interests are.  He was also given a small token gift to remind him of caring, interested people. The gift was in a bag with the foundation's name printed on it.

Inside was a Mancala game

~Catching up~

Last week's chemo has wiped out Jethenro's energy level.  By Sabbath he was so very tired/weary/fatigued that he could barely talk.  Fortunately it has slowly gotten a little better since then. We have been grateful for internet and being able to have our church's audio team broadcast  live either audio or video (or both) so that even though we cannot be in the audience, we can hear the service.  We feel blessed by our church family.   We also have the chance to get  some inspiring internet tv channels to uplift our spirits throughout the Sabbath hours.
Tomorrow is another clinic/chemo day. It is also the beginning of school, and Jethenro has a class in the classroom after his appointment at the clinic.  My mommy heart says~no!!! But the Dr.'s and others say 'yes' to getting back into school. He only will be in the classroom once a week, and the teacher knows about his condition~and is a nurse~so I leave this apprehension in Gods hands. I never had to feel  what it was like to drop off my child for his first day in Kindergarten~but I think that I will now~especially when he has to carry an EpiPen with him to class!

Chemo Day~tomorrow

Early this afternoon I took Jethenro to the clinic to have his blood check to verify that his counts are high enough to begin his next phase of treatment. Sure enough his ANC (defenses) is at 880. Still on the low end, but enough to begin chemo.  They do not administer chemo if ANC is at or below 750.  He has had a week to recuperate from his ANC of 134 last blood check. 

This phase of treatment will be a little harder then the last~it is called Delayed Intensification.

Thank you for your prayers on his behalf.

Visitors!

A week ago a couple of Jethenros friends from another state contacted my husband to find out if it would be possible to come visit Jethenro~ for they knew he could not travel right now.  Arrangements were made, and the friends drove extra miles to spend a few short hours with Jethenro.  It really boosted his morale to be able to share a few limited activities with them.

~Picking oranges and grapefruit~and eating a few~

Playing ping pong!

Defenses Low=No Chemo Today

I took Jethenro to the clinic fully expecting to begin the next phase of chemo today.  His blood was drawn and whisked off to the lab for analysis. Everyone was shocked when the results came back. His defenses are too low to begin the chemo! Evidently he has been battling a virus or allergies that have driven his white blood cell counts down, and the result is to wait until his body defenses are back to normal. So, we wiped  the emlacreme {~a lidocaine based creme that numbs the area where they do  lumbar punctures}  off his back, and got an appointment for next week to try again. 

Another unexpected delay in treatment. 

That is why we take one day at a time~with Jesus

New Year Celebration

Jethenro celebrated New Years Eve by finding out he passed the ACT test he took a couple weeks ago.  He received a higher score than anticipated and we are all happy with him...He did not like the thought of ever having to take it again.
He and his parents then went to bed early to celebrate the New Year in dreamland.

Quiet...Miracle!

Quiet means that nothing major struck us this week.  Every day I wake up with the grateful thought that we are at home.  Jethenro has had a bit of  allergies/cold/sinusitis since the 16th.  No fever so we don't have to go find out exactly what it is. We have been careful about integrating the 8 laws of good health and a few natural remedies that we can incorporate to stay as healthy as possible, and hope it resolves on its own. He has had a short break before the next phase of chemo begins.
I received a phone call on Thursday morning from the clinic asking for Jethenro to go to a particular hospital to get an echo cardiogram. This is routine to verify his heart is still functioning well and to compare with a previous echo. All of this is in preparation for a new phase of chemo that is scheduled to begin this next week.
God arranged for Donald to be home on that particular day to get Jethenro to the right place at the right time~for the hospital he was sent to would not work with our insurance. Donald knows people, and was able to take Jethenro to another place that accepts our insurance without an appointment.  This was a miracle, for Donald had scheduled himself to work on that day~but the supervisor had not put him on the master schedule plan! 

Christmas Eve Day

This was a Sabbath to remember. 

It was the first day Jethenro has been to our 'home' church since March. 

It was the first Sabbath we went to someones home for Sabbath lunch as a family~ since our vacation in May~

And we stayed there until after sundown...

Seven young adults and teenagers at the table make a lively bunch.

Can't see 'em, but his sisters are singing in that small choir for the special program at church..

MERRY CHRISTMAS!

Discharge Day!

My phone rang at 7:30 a.m.   There was a sleepy voice on the other end trying to get the message across that the nurse had disconnected  Jethenro's hydration iv and was getting the discharge papers ready.

Nitha had spent the night with Jethenro, and had a car~ but  no keys~and they need a parent to sign the discharge papers. I dropped my immediate plans and took off only to find them ~still sleeping! But it was true~Jethenro had cleared his chemo. We came home for a late breakfast.

This concludes one more phase of treatment except for some oral meds that continue through December 31.  There are no more scheduled hospital chemo visits.
However,the next phase will cause defenses to drop once again, and the possibility of getting sick or infections increase.
We ask for prayers concerning this distinct issue as the plan is to begin the next phase after the holidays.

2day...

The Oncology Floor seems to be a popular place to visit just before Christmas.  Today a group of kids from a local middle school stopped in with presents for the kids on the floor. This is the gift they gave Jethenro.  It is an indoor Wall 2 Wall  Nerf basketball set.  Now he has an excuse to play and exercise inside...!

Look who stopped by!

Blue Santa came to visit from the local police department