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. 

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...!