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.

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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