Boyz Toyz

Even though Jethenro had in clinic chemo on Thursday,he was ready to have a little fun with a friend today. 

Making Sa*mosa*s for class

Jethenro's wellness class had an ethnic food potluck.  He engaged his aunt in helping him make enough for his classmates~with some left over for the rest of us to enjoy. They didn't last long.

something new~something old

Jethenro has just entered into his second year of maintenance ~ which is the longest phase of treatment that lasts three years.  For the next two years he will have fewer lumbar punctures.
 There are days that float by that we don't think much about the battle he fights.  He feels good, looks healthy, goes to school, does his homework, excersizes and enters into activities with friends.  Know one looking at him would know what he has been through. However he is aware, and takes precautions when necessary.

For the record, this past weeks blood check showed his anc was 560~ a little on the low side.

He decided this week to try something new~to cut his hair short, the way  it was at diagnosis. For the past year he has kept it a little longer~just because he could! His sis had the honor of being his hair dresser.

Another sibling activity was to wash the very dusty cars.  We have  not had rain in a long time, and the wind blows dust everywhere.  The almost new toyota corolla my daughter just purchased at a very good price really needed a bath, so the cars lined up to get their turn  ;)

Thus ends the week of something old~something new~ or is it vise versa?

One more~one less

notice the sign on the door~lol

This weeks schedule included a visit to the clinic for chemo.  It proved to be an interesting appointment.  The clinic is a satellite office connected with Childrens Hospital and Baylor University in Houston. They have been sending in a visiting Pedi Onc Professor from the pool of Dr's over the past few months since the Nurse Practitioner left her post with the local clinic.  Jethenro's last two lp's have been performed by these visiting physicians.  I observed the doc and was very impressed with her technique and bedside manner.  I learned that ALL was her specialty, and we had a good conversation on where we have been and what to expect in the future.  I had read recently some discouraging statistics about reoccurring cancers and organ failures in later life. She assured me that those statistics did not include ALL patients. She was impressed with Jethenro's over all health, and that he was heading into the medical field of study in college.

A little chuckle we had was that the nurse almost sent Jethenro home without giving him VCR(chemo through his port) and de-accessing his port. The visiting physician does her lp routine a little differently than the regular docs, and this threw the nurses routine off also. I wished i had my camera ready when she realized the mistake.

And the sign on the door made us laugh too.  The clinic is set up in a temporary location while the regular clinic location is getting a face lift.  Jethenro was the 'office manager'.  I asked the nurse if that gave him the authority over the nurses...and their mistakes. We have grown to respect and interact freely with this medical team. 

Whatever way you want to look at it~ Jethenro has one more lp behind him, and one less to endure. Looking forward to the end of all this chemo.

Snapshot

Shooting a wedding 

half way~with a look back

before diagnosis~so pale

A memorable trip~ just before diagnosis

Anointing Service just after diagnosis

Ambulance ride to the airport

Qualifies for wish to be granted

attending a Christmas party 2011

laporotamy incision

19 units of blood~13 units of platelets over 9 monthes

needle biopsy to determine possible infection

welts from toxicity

watching a movie together

supreme team sibs

our second home

newest family member

walking is always easier with friends around 

hair had gotten so thin~he chose to take it all off

and dad followed for support

first road trip

needs something to do...

build a computer! all parts were donated.

fun in the sun

making music together

We are looking at being about half way through Jethenro's treatment for ALL. Looking back I see so many blessings through all the bumps and curve balls that have been handed my son. He continues to be an inspiration to those around him. Thought I would post some reminiscing pictures to remind us of how far he has come

Thank you all for your prayers and support

  

Finally~an update~

Last week blood counts showed  an ANC of 1008.  Back onto oral chemo he went.  Because Jethenro has had so many chemo holds from low blood counts even though he is on 50-85%   in his dosages for chemo, the ONC team is altering his prophylactic antibiotic.  He begins a once a month regimen of an inhaled antibiotic that many leukemia patients use. He will have to go to the hospital as an outpatient for this 'nebulizer' treatment of 'pentam'.
He still has a little bit of congestion in the mornings, but  seems to have squashed the flu bug that landed him in the hospital.

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

~Working on an electronics project~

a hobby he has picked up since building his own computer

Moms Point of View

Jethenro is not completely well yet~his eyes display it.  He has a blood check this week.  Please pray he recovers fully. 

Nope~Can't Hide~

Somehow the government finds you when you 'come of age'~wherever you are~ 

And they don't observe your medical records first...

Yep~ He has a draft number

Sleep!

The fever lasted 24 hours.  The doc discharged him Friday afternoon.~Got home just before sundown.  The whole family was in bed before 10pm.  Some of the family did not get up until 10:30am...it was wonderful to get sleep with no interruptions. Jethenro is still not feeling good, but at least there is no fever. He is on meds, so we hope that  takes its intended effect.

His blood counts are low.  Too low.  The doc says the oral chemo needs to be adjusted. There will be an in-clinic appointment this week for blood check and consult. He will have been off oral chemo for two weeks

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

UPDATE:

Today Jethenro has been feeling better, so the meds are working...

Second Home Revisited

  Jethenro was hit with a fever yesterday.  It went above the magic # of 101.5* which means an automatic admit to the ONC unit at the hospital. For now he is getting iv antibiotics and Tamiflu as he tested positive for the flu.

This is the sunrise that God created for me(mom) as I left the house this morning

The door to 'home' has a droplet precaution sign. :(

Back to the clinic we go...

 It had been 5+ weeks since Jethenro had been to the clinic for chemo.    I breathed a sigh of relief when  his port was accessed and knew his port was working~for having one replacement surgery~is enough!  Since the NP  no longer works at the clinic, the associated hospital  have been sending in relief doctors to help out. Jethenro had the visiting physician do his lp.  While he was working~one of the regular doctors peaked around the curtain and informed us that he had taught this doctor how to do this procedure while  working at the teaching hospital earlier in his career. So we recognize the close association. 

The blood lab results showed that Jethenro's platelets were low, so even though his ANC was above the magic#, oral chemo has been suspended for a week. Blood recheck is scheduled next week.

Snapshot

A recent haircut shows the disappearance of the curly hair...

Christmas (:

Christmas time! That wonderful time where families get together and spend time eating, laughing, and talking. Typically our family celebrates Christmas in Texas but this year Mom, Dad, Roshi and Jettie decided to abandon tradition and head to the grand state of Washington to spend the holidays with my Dad's second family. Additionally, GYC was held in Seattle, WA this year and since most of the family missed it last year due to Jethenro's immunosuppresion it was decided that this would be an addendum to the family vacation. The first couple of days were spent with family and enjoying sledding up in the mountains of Northern Oregon. Nitha flew in Christmas afternoon and the family was finally together once again :)

.:.Siblings + Snow = Perfect Combination.:.

.:.My daddy and my brother, handsome men no?.:.

.:.Christmas Dinner.:.

.:.Halder Family 2012.:.

.:.Halder Family + Grandparents 2012.:.

After spending a couple of days in southern WA we headed up to Seattle through Snoqualmie Pass with fervent prayers that the roads would be clear. Praise God the prayers of these Southern drivers were answered :) 

GYC was absolutely amazing. The speakers were phenomenal. Seeing so many friends. Meeting up with several families together as a family was such a blessing.

                                   

                                      .:.Jethenro and Nitha volunteering with the registration team.:.

.:.Infamous Seattle gum wall with friends.:.

.:.Friends.:.

 Jethenro had had a lumber puncture two days before the trip north. Several of the staff members at the clinic had expressed concern about Jethenro making the decision to opt out of the flu shot and being around such a large crowd of people. Flu season has started early and several of their patients had already come down with flu symptoms. It was with prayerful and somewhat worried hearts that we continued with the plan to attend GYC. Jethenro faithfully carried around his hand sanitizer and did very well at going to bed at a decent hour. The day after GYC the oh-so familiar symptoms of a cold had come upon Roshi and by the end of a long day of traveling Jethenro felt it coming on as well. The family headed home quickly and when they checked his temp it was 101. The clinic has to be called when his temp goes up to 101.5 so we earnestly started praying that it would go down. He went to bed, rested a lot and drank a lot of fluid and by Sunday evening had a temp of 98.6. Praise the Lord!!!

 Thank you for your continued prayers. They are ever so appreciated :) Hope each one of you enjoyed your holidays!

Something Important...

The Truth 365: Be the Voice for Children

My son is one of those cancer kids who needs your voice.  

This video is a little long, but oh so worth the watch.  Please help me get the message out to raise awareness of the neglected childhood cancer research.  These innocent kids need our help!

If you don't have the time to watch the whole video~the end of the video gives this plea;

Please go to 

http://www.thetruth365.org/petition/

to sign the petition for the reason stated below...

PETITION

Please sign this petition to urge President Obama and National Cancer Institute Director, Harold Varmus, to appoint a pediatric cancer specialist to the National Cancer Advisory Board in order to give a voice to all children fighting cancer!

The National Cancer Advisory Board is the advisory council for the National Cancer Institute. The board helps set the strategic direction for the NCI and has direct input on grant and funding decisions.

National Cancer Advisory Board Members are appointed directly by the President. Currently, there are no pediatric oncologists on the panel.

If we can obtain 25,000 signatures by December 14, 2012 a response to our petition is required by the Administration.

SIGN AND SHARE OUR PETITION TO APPOINT A PEDIATRIC ONCOLOGIST TO THE NATIONAL CANCER ADVISORY BOARD

Thanksgiving

At a recent clinic visit, we had to say good bye to the Nurse Practitioner who has chosen to continue her practice elsewhere. It was a difficult farewell, as she became 'like family' to us. 

We are ever grateful because she really got involved in the patient care, and bonded with the family. We were so blessed to have her available through the hardest parts of Jethenro's journey. 

Responsibility

The day he got his drivers license 

Brought on more responsibility!
He has learned how to maintain a car, and the one he drives needed an oil change.

Hair Dooz

Before and after a much needed haircut. First haircut after I lost it from chemo back in like march.

Still has lots of hair!!

 ( ...Mom checked, and it was early Feb. when we buzzed it off.)