Special Time

We were  able to attend Nithas' pinning/graduation as a family.  Because of the previous chemo issue, and early dismissal from the hospital Jethenro was able to attend.  As I looked around the auditorium I realized that this is the first time he has been surrounded by such a crowd in 6 monthes. I am glad his defenses were up, and he was able to enjoy it.

Serenade

While we were at the clinic on Monday, a group of children from a local church sang some Christmas carols and handed out gifts.  In turn, the patient relations director gave them a tour of the facility. 

While they sang Silent Night, my eyes grew damp.  Beautiful song, kids sharing from their heart in a way they could reach out  touched my heart.

(And yes, Jethenro received a gift)

Postponed~No, CANCELLED!

The nurse popped into our room about 8:30 pm last evening to inform us that the chemo infusion would not begin until  morning.  There appeared to be a shortage of this particular medicine in the hospital pharmacy.  It  was enough to begin infusion, but not to finish off  the total treatment. Since the meds had to be consecutively given without a break, the plan was to wait for the second half of the meds to arrive before beginning any infusions. The chemo  was on the way in a truck from Dallas.  By the time it reached the hospital it would be around 1 pm before the chemo could be started.
This all was a little unsettling and disturbing, as it was changing our weekend plans.   
Jethenro and I were sitting in his room  today when the nurse and Dr. came in at 1:15 pm.  We were told that the chemo had arrived, but was the WRONG TYPE. So Doc was sending Jethenro home...!
The Doc said that they might just begin the next phase without it.  The final decision will be known on Monday when we go in for an appointment at the clinic.
Jethenro has had 24 hours of  i.v. hydration. We don't know why~ but God is in the know. Must be a reason that we are not aware of.
Back to the original weekend plans...!

Clinic to Hospital Kind of Day

Morning found us at the clinic bright and early~well~ only half an hour late for the scheduled appointment.  We have learned that the docs do not arrive as early as the appointment time has been given. We end up sitting and waiting in an exam room for an hour or more for the docs to arrive on hospital admit days ~and there is always a physical exam before a hospital admit. That gave me time to make Jethenro a good hardy breakfast this morning.  He has had a good appetite lately which has helped him regain some weight.  We have also seen a little muscle  mass returning and that is exciting.

Thanks to all who continue holding Jethenro up in prayer. It means so much.

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Friday was a first hair cut since April. 

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Weekend Activity

The ONC team postponed Jethenro's chemo for last week to accommodate for his scheduled ACT test.  The test had been postponed twice already due to vacations, camping trips or chemo. He has been studying this book on the good days recently.

 Now this book will be able to retire.

Because Jethenro's defenses were good, we were able to join a little bit of group activities over the weekend..  We went to a performance of "The Messiah" conducted by the academy music director. The academy choir joined a local church choir and community Chamber Orchestra to create a beautiful sound.

Last night some of the Young Adults got together for food and fellowship at a local church members home.

Three Pastors were there~one former,two present

I think the present was getting advice from the former~or vise versa.  They seemed to be into a deep discussion after just meeting one another!

Tomorrow it is off early to the clinic to have blood labs drawn, and an over all health check to verify if Jethenro is ready for chemo.  If he qualifies, it is on to the hospital for HD MTX, and a 3~4 day stay.

Christmas Party!

A local charity organization sponsored a party for all the patients at the cancer clinic.  Immediate family members were invited. Knowing that Jethenro's defenses are up at the moment, and that the girls were available to attend, we really encouraged Jethenro to 'want' to go.  I don't think we achieved the  goal of 'want', but he finally said he would go to appease the rest of us who thought he needed to go.  We have not had a chance to do something fun together as a family for quite some time.., so this was the chance. 

Jethenro  is content to associate with his established friends.  Fortunately, the ones he is closest to locally have remained in contact with him throughout this detour in his life.

Here are memories of the evening:

~While waiting for the party to begin~

Standing in line to register

Choosing a gifted hat

Choosing a gifted blanket/quilt

Choosing a picture frame to decorate

Original Creation! (It says Siblings Forever)

Playing a game while waiting in line for a picture with Santa

With one of the girls that work at the clinic

A 'healthy' supper!

The quilt Jethenro chose~very nice!

There were other activities for children~moon jumps and slides, face painting, cookie decorating, decorating a Santa hat. Our daughters just may have been the oldest siblings to attend.
It was refreshing to go, and mingle with other families that are on a similar journey.

Siblings

How to support Jethenro

~sister style~

Sit in a quiet corner of the nurses station just across from Jethenro's room at the hospital~and study~

The girls do move to the hospital with Jethenro if they are not in school or at work

Such a blessing!!

They work their schedules to stay with him during the night so mom and dad don't have to. Because they are both considered adults, and one a nurse and one in nursing school~ the ONC team are totally ok with it. They even teach the girls what they are doing.

The Dr's are professors, so the clinic is a teaching environment.  They have student nurses and Dr's come through periodically at the clinic. 

Update

This morning finds Jethenro still in the hospital.  We had not planned or expected this delay, but with oral recovery meds and a different Dr. on-call the chemo had not cleared his body to Dr. satisfaction last night. There will be another chemo level check at 9;30 am. We pray that he clears, and can be home by noon.

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And we were!!

Back in The Hospital

We have had some quiet, recuperating days at home since the last hospital admission for chemo. Jethenro was feeling really good considering what he has been through. He has gained about 8 pounds these past few weeks. I haven't posted anything because there wasn't really any new news... until yesterday's labs showed that he was ready for another dose of HD MTX.  It breaks my heart to watch that big bag of chemo drip into his veins. Not just one but two of those in a 24 hour period. Yet I know it has to be. He also had other chemo administered. But it was also a stressful day, as we learned that the recovery meds that they usually give is changing from iv to pill form. This can cause other reactions that may not be pleasant, or alter how quickly he clears the chemo.  But we won't know until he experiences it. From the sound of it, there is a national shortage of the iv form of leucvorin . The nurse told me today that it appears that it will be a standard protocol  now to use the oral form of the medicine.

The nurse and sister~nurse make him get up and walk, pushing his own iv pole.

We appreciate so much the prayers of our friends.  Thank you.  We are always concerned about side affects , complications and long term effects that chemo delivers. We know that God is Faithful, one day at a time. 

Home Sweet Home

Jethenro was discharged from the hospital Friday evening. We were home by 9 pm and he was  able to get a good night sleep.  He will have two more scheduled hospital stays during this phase of treatment.

Celebrating Veterans Day ~Hospital Style~

What we see from the hospital window~a crane was brought into the parking lot to fly the flag today.  It was not there earlier this morning.

~Who Else~

Who  goes into the hospital felling good and well

~gets put into the PICU unit~

~transfers to the regular floor~

to feel worse...

Isn't that a little backward???

Might get discharged...

If his labs at 6pm show clearance of chemo

That is what we are praying for!

Back to Hospital

The day began with a healthy size breakfast and a trip to the clinic to qualify for chemo.  We arrive at the hospital, and the ONC floor is full~ so we get put into the Pediatric Intensive Care Unit until a room opens up on the Oncology Unit. We were just getting comfortable when the escort arrives to take us to our new home.

Donald gets to chill since he didn't have to go to work.

Five Monthes Today

It was 5 months ago today that we received the diagnosis of ALL.  Jethenro had spent the night in the hospital getting blood and platelet transfusions.  A sample of his blood had been sent off overnight to MD Anderson to verify which type of Leukemia he had.  I was ignorant up to this point. I didn't know there was more than one kind! Of course the rest of my medically inclined family understood...but I didn't.

The time on the clock that Doc E stepped into the hospital room to give us the news is forever etched in my mind.  He pulled my husband out of the room and spoke with him privately at first. They were out of the room for quite some time when i stepped out to see what was going on. I found Donald sitting in a chair with phone in hand, tears in his eyes making arrangements to get off work. I don't recall seeing the doc again, but i know he was there making arrangements to air flight my son to a larger hospital. There was no question which parent was going along on this flight though it surprised the flight personnel. Usually the mothers attend their children, but Donald was not about to leave his sons side.

Everything happened so fast that day that there was no time to research our options, to learn what alternative/complimentary medicine might be available. It would not have made much difference~there is no alternative to chemo for this type of leukemia. We have been installing complimentary methods as much as possible, and thanking God for friends like you who intercede in prayer on our behalf. 

We continue to ask for your prayers as we continue this journey with Jethenro. His spirits have been good most of the time, and we are told that the worst phases of treatment are past even though i hear from others who have been, or are going through it, that the next phase is difficult also.  Nevertheless  he has applied to get back into school, and he will be able to register for classes soon.

~we thought~

~but it didn't happen.~

Packed up, ready to go to the hospital today, but have to stop at the  ONC clinic first to verify blood counts. Get blood drawn and sit and wait for the NP to give us lab results, hospital admit paperwork, and be on our way. But it didn't happen the way we planned!  The NP showed us the lab results and they were just under the 'qualify' range. So a new appointment was made, and that means yet another stick in the arm. No hospital admit for chemo today!
This mom is learning that  changes at the spur of the moment is ok.  

Birthday Extension

A nick name only his sisters can call him :)

The family5 decided to celebrate a week after  chemo day. Jethenro likes his sisters homemade ice cream cake, and since he was in the hospital on his real birthday we waited until the chemo had warn off a week. He has also received a very nice hand made card from his group of friends at church and a gift he knew was coming in the mail post~birthday. It has turned out to be  a special birthday after all.

Clinic Day

Jethenro had his blood labs drawn today.  No need for blood or platelet transfusions. {yes!}  He is producing his own good blood.  Defenses are a little low, but not critically low.  Makes this mom happy.

Friday and Still Waiting

For 24 hours we watched two of these huge bags of liquid drip into my sons veins. After 24 hours, they  give an antidote every 6 hours until this chemo clears through his body. So we all hang out with Jethenro at the hospital as much as possible.  Discharge will be late tonight.
This new hospital does have advantages, but disadvantages also. We will let Jethenro decide which hospital he wants to go to in the future.  He had his blood checked today, because he seemed a little anemic, but the lab results showed that it will probably be next week before he needs another transfusion. We have an appointment for the blood check next week, but no chemo planned until Nov.1. ...when we do this again.

The doc told us that in January Jethenro can go to school in the classroom. So he will be registering for his classes soon.  Fortunately most are on line, but still my mommy heart is reacting to this news as if my child is going off to school for the first time as in kindergarten or 1st grade! Gasp! Gulp!

Its my birthday!

Our day is being spent in a new way...bouncing from the clinic to a new and different hospital.  Twas all in the name of leukemia and chemo needs.  Not really the way we wanted to celebrate a birthday, but as  Jethenro said..."We wouldn't be doing anything special anyway!"  We are surprised to have a familiar nurse~we cheered and embarrassed her.. She happens to work  at both hospitals.

He had a special gift from the staff at the clinic. and they sang happy birthday

Playing a game in the waiting room at the clinic

Being a good sister...reading to the patient...who doesn't appear to be listening

The serenade

Waiting room again

Finally into the hospital room

The familiar nurse we all were happy to see.

A Very Special Day Indeed

Psst, hey you, yeaah, you! Come here! I have a secret to tell you :) Today marks a very special day - Jethenro's17th birthday!! If you are so inclined, post a special birthday message here on the blog, on his facebook page, or send an email to halderfamily5@gmail.com.

Half the family is up already getting ready for our trek to the hospital to start another round of chemo. Jettie will be in the hospital for a longer period of time (2-3 days max hopefully) because we have to wait for his body to clear itself. Please pray that he has no adverse side effects and that he clears quickly.

Blessings to you all!

an early birthday celebration

Blood cells! How creative! The words say: "With the help of God, we will overcome ALL"

A good appetite today...

Making his wish, and praying over it.

Jethenro is scheduled to have a heavy day of chemo on his birthday, so the extended family wanted to get together before he starts the next phase of treatments.  I apologize for the poor quality photos...I just have my phone for pictures right now.
Please pray~ as complications are what we war against when he is in the thick of a phase of chemo.

Calm Trust...

A christian who is growing in grace does not ask, "Why me?"  Because he is a christian, he has a certain serene outlook, a kind of confidence, a spirit of peace, that though it  may be briefly disturbed, carries him through any experience that life throws at him.  Being a christian does not mean that everything will always go just as we would like, if we could choose, but it does mean that we can accept whatever happens with calm trust.
 (Taken from a devotional book.)

Good News-Bad News

Today Jethenro finished the 2nd phase of chemo treatment. He has been feeling much better than last week!  He still has to be very careful with activity, but it is wonderful to have his sense of humor and personality back for a few days.

Next week he is scheduled to begin his next phase of treatment.  This will involve a hospital stay for anywhere from 36-72 hours. To top it off it begins ~on his birthday. The ONC team is willing to postpone it a day, but he decided it wasn't worth it....that we wouldn't be doing much on his birthday this year anyway...might as well celebrate it in the hospital!

Sabbath Rest

Brought Jethenro home yesterday late morning with oral antibiotic. 

Glad to be home for Sabbath.  It is quiet and peaceful.  Watched it rain a few times. That was a welcome sight.

Today...

Jethenro is still in the hospital, but it looks like tomorrow will be D day.  The 'important' Dr. took him off of  the extra hard antibiotic and are just waiting around to see what happens in the next 24 hours.
It appears that the fever came as a result of an infection  in an undetected cut he had on his skin. We are grateful it was nothing more serious then that and it appears that he will heal...
Not only will a virus infection land him in the hospital...so will a cut... when his defenses are too low.
~mom~

Makin' it like Home

The girls  have a box that carries supplies to make our 2nd home more attractive. Here they use window markers to identify the type of patient that is in this room...!

Time Flies Unless...

.We are with Jethenro in the hospital once again.This time it is for more than  platelet or blood transfusions.  He ate breakfast Sabbath morning, and spent the morning with his sisters while Dad and mom went to church. By lunchtime he did not feel like eating, and just drank lots of water and juice the rest of the day. By evening he had a low grade fever that appeared to last throughout the night. Sunday morning the temperature was still low grade, but by noon it was spiking at 101.9.  We waited and checked again around 2.  He still had a fever and minutes later as I was getting my food ready to eat, he mentioned that the smell of my food was making him sick....and it did.  With that the decision was made~the Dr. was called, and into the PICU we would go.  When we arrived at the hospital, they had to put us into the ER which was not what we had planned!  We were a direct admit, however the PICU did not have enough nursing staff to accommodate us. I was not happy, my hubby was not happy about it, but we made it through that muddle and were into the PICU by 5 pm.Whew...home ...
The remainder of the time is being spent in finding out why the fever, while keeping it under control. Looks like we will be here a few days. Will update here if we discover anything.
Jethenro was scheduled to have had his last chemo therapy  today for this phase. Doc B also has stated that the other phases are not as hard.  I pray that he is right.  I ask that you join us in prayer for Jethenro.
~by mom~

FYI

The day started early. Two units of blood transfused today. I watched Jethenros yellowish pallor turn to normal within minutes after the infusion began.  It was amazing how quickly it affected his color tone. The favored, prayer warrior nurse was off today.

I am so grateful to my two special girls that cleaned the house while I was gone.

Most posts... are written by mom...

Activity!

Relaxing while getting a blood transfusion

What mom did while getting the transfusion

We were also blessed today~with a visit from a very special nurse who stops to visit us any time he sees us in the unit. Today he took part of his lunch break to pray silently~bowing his head over Jethenro.  He has shed tears of sadness with us, and rejoiced with us along this journey~ and  always encourages us and challenges us to deepen our walk with God!

Sibling Companionship

She walks with him to keep him company while he listens to her study out loud.  They both benefit.

Peaceful Days

Jethenro has received chemo 4 days this week. He will have 4 more days next week. We will not see the affects for 14-21 days. His defenses can and will drop quickly and unexpectedly.  That is when he becomes susceptible to any and every germ he is exposed to. The rest of the family becomes more careful, and the house gets cleaned more thoroughly. It may ward off complications...at least we hope...

But in the meantime we celebrate the good days.

Sabbath music~ the first time singing w/ family pianist in months

Piano~Violin

It warmed this mothers heart to know Jethenro could still sit down at the piano and play music with his sisters! It as been a long time.

His guitar waits for him at its place on the wall~waiting for the day when his fingers no longer tingle ~from  the side affects of chemo

Answered Prayers and Olive Garden

We are praising God for answered prayers today! Jethenro had an appointment with the Infectious Disease doctor today and we finally got the pathology report from the nodule in his lung and.... there is absolutely no fungus/mold growing!! We are so very grateful and thankful for your prayers in this matter!! 

On another note... Jethenro has had a pretty good week. He got a chemo drug on Friday but the medication he received doesnt have a lot of side effects other than bone pain and it doesnt cause his blood counts to drop significantly which means he still has some defenses. This evening the whole family was home so we took the opportunity to have a family evening and head to Olive Garden. This is the first time we have been out together as a family in over 3 months! It was soo much fun just being able to sit there, eating, laughing and having a wonderful time.

Monday he starts another intense round of chemo. He goes to the hospital for one of the meds and will be there until he is cleared to go home. Pray that he will clear quickly so he doesnt have to spend the night there. Then Tuesday-Thursday he has to go to the clinical everyday. He gets Friday, Sat, Sunday off and then is back to the clinical Mon-Thurs. 2 tough weeks ahead of us but we know that He is always there :)

Awareness Month

                  September happens to be Childhood Cancer Awareness month.

It just so happens that we have a child with cancer.

This is the sign we saw in our clinic today as our son received his treatment....

We celebrate his good days!

Please pray that he quits losing weight...he doesn't have it to lose! But every time hw has been in the hospital, he has lost some. and is hard to gain it back. He doesn't have much appetite right now either...