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