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.

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

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...

Fun Times

Learning a new game on one of the better days.

Chemo Day

Chemo was postponed until Friday, but Jethenro saw Doc B today.  Doc wanted to verify that all was well, as he had seen me  melt down at the hospital. He is also concerned that Jethenro does not have much appetite, and not much energy when his blood counts are normal. He sensed that Jethenro just needed a few more days of rest before starting in with the therapy, and assurance that Jethenro was not lapsing into depression. Very compassionate doc. Since Jethenro is in remission, continuing treatments on a prompt schedule are not  vital.
I am so grateful for such compassion.

Team Support

The colors seem a little faded due to low quality camera, however I think it is evident that they are orange and blue.  Siblings bonded together by chords of love.

Orange is the color symbol for 'leukemia'.

Blue is the color symbol for 'super hero', or 'team supreme'

This mom is encouraged by observing the connection of my three teens.

Hospital Bed Entertainment

It was the night before D~day, and we all thought Jethenro would get some extra sleep. But for various reasons, he was awake quite often. Then, just as he was drifting off to sleep in the early morning hours, his bed started moving. He frantically pushed the buttons on his bed, but his legs kept going upwards. Finally, Nitha who had stayed the night with him was able to capture a nurse to come quickly. She had to unplug the bed. Fortunately through the frantic pushing of buttons, Jethenro was able to get the bed into the flat position. He was able to get a new bed for a whole 10 hours before discharge.

Biopsy update

Today was D~Day!
We are home!!
Biopsy so far negative!
Chemo resumes Monday.

Sleepy time Update

The morning after the procedure, Jethenro developed pain that got increasingly worse until he needed strong pain medication. The x-ray showed a very small air leak. Pneumothorax had developed as the docc expected due to the location of the nodule. He slept most of the afternoon as a result of the pain meds. He was then given extra oxygen through the night to help it heal. This mornig he still had pain, but no more pain meds. He also has elevated WBC count that the medical team is going to address. Therefore we know we are here in the hospital for another day. We have not heard the results of the biopsy yet.

The Procedure

My mind is on overload learning all the medications my son has been on or is taking or will take...it is difficult to know he has to go through so much suffering on this journey...but through it all he remains strong, and we encourage one another....by Gods grace, one day at a time.

There is a nodule on his lung that has been watched over the past two months. Since it was still there, the medical team decided it was time to go in and investigate what the nodule consists of.

The original plan was to do a regular surgery and remove the nodule, but the team was able to arrange the 'needle biopsy' to deterrmine what is in that nodule. The thoughts of some of the docs are that it might be a mold, as it is very common in neutropenic patiennts in our climate.  However, we are praying for a miracle.  The nodules on his skin were not the mold...may this nodule be the same.

Only a band aide and a few pen marks proved the needle insert

He has tested positive for "walking pneumonia" which is what brought us to the hospital this time...he is being treated for it also. Chemo is suspended as his defenses were very low, and he needs to recuperate.

Our hearts are full of gratitude for all of your prayers. They sustain us!

Sunday

I am getting ready to head to the hospital this morning.  The fever has continued off and on through last evening.  Jethenros defenses are critically low. From all the lab results, it appears that he has a virus. (cold)
The medical team are in the process of arranging a procedure that will drain the nodule on his lung, and pull out tissue to biopsy.  This is a little less invasive then what was first planned.
Our prayers are for this to be just a type of boil, and not need any further surgery.
So begins another week~
One day at a time~ with Jesus
mom

Week in Review

Monday~ Chemo day. At the clinic for 3 hours

Tuesday~Feelin' pretty good- visited cousins for about an hour celebrating a birthday

Wednesday~Awoke with a sore throat.  Visit to the clinic. Blood transfusions and platelets ordered.  Follow up ct scan done. At hospital until 1 a.m.

Thursday~Woke up with 102.3 fever. Admit to hospital. Three antibiotics started.  Fever fluctuates all day. Nodule still on lung after one month is addressed by Infectious Disease doctor. Another surgery ordered to remove nodule, but not an emergency at this time. Consult with surgeon probably tomorrow.

Friday~Remains to be seen...To be continued...

Please pray for our family...hardest days of our lives...

Whair did it go?

That is what dad pulled out of Jetties drain when he was trying to figure out why the water wasnt draining. Guess we now know where most of his hair went ;)

Friday

It was a blessed beginning to Sabbath as Jethenro felt strong enough to attend Vespers.  It warmed my heart to see his friends surround him...some he had not seen since March!

He even drove home~ in his uncles Toyota Prius Hybrid that we are 'babysitting' this weekend. 


Almost like an 'old times' kind of day...






 But Monday is coming...with more chemo.  We never know how he will react....


Please pray that he has no complications, or serious reactions.

Porta Cath Challenges

There are times that Jethenros porta cath is left accessed for a few days at a time.  Our almost graduate nurse has invented a way to keep it dry while taking a real shower. 

Items Needed: 

freezer plastic bag

a roll of paper tape (because Jethenro reacts to plastic bandaides or plastic tape)

Unfortunately, I am not getting very good pictures lately, as my real camera is broken and I am using my phone.

Friends

stopped by for a visit

A New Week

Sweet potato bread...a gift greatly appreciated

Lasagna

Rice and green bean casserole

Homemade pizza

Since I shared the kind of food the hospital provides, I thought I would share what we have been having at home.  A little more appetizing I think....and a little on the healthier side.

Another day...

Jethenro had another 'chemo at the clinic' day.  When he told the nurse what happened yesterday, they gave him an injection that eased the nausea, and he has kept his food down today.  The Zofran doesn't have a lot of side effects.  It just makes him sleepy.
Please pray that we can keep ahead of any side affects or complications. His emergency  laporotamy with pneumonia and lesions on the skin  all at once have been enough.  He was also taking an anti-fungal medication during the stay in the hospital and until he began chemo.  The culture takes a month to determine fungal growth, so we don't even know what we are treating...or if it is necessary.  

Clinic Visit

Three of us headed to the clinic with Jethenro to receive a chemo injection. Everything went well. Donald needed to talk with the nurse practitioner, and so we got a late start home. On the way, Jethenro verbalized feeling nauseated. By the time we pulled into the driveway...he barley got the words out, "I am going to throw up" before opening the door and proceeding to do just that. Lesson learned. Never leave home without Zofran! But, oh I hate to use it too! This is a different chemo drug than he has had before...and this one is the first one that has given him nausea.

Restful days...and then

It was wonderful to spend a few days at home before the next phase of chemo started. There was laughter and then serious talk. It was good to see Jethenro almost himself.He was able to gain a little weight with home cooked food. His incisions have been healing great. His blood was in good condition.
But then chemo again. He and mom are currently in the hospital. A planned visit this time, administering meds that have to be monitered.
Prayer needs are for:
Continued apetite without nausea
No complications
Complete healing
Family relations