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

We R Home!

We are home. Ahh...It feels good to be here. A good night sleep without interruption is planned for all in this house tonight! Someone dropped off lunch for us.  It was so good! Thank you Mrs. S!
Friends and family have been such a blessing filling in the gaps, whether it is bringing us food, visiting, sending cards, or love gifts. All mean so much.

One day this week as I was driving to the hospital, I had troubled thoughts cross my mind...followed by an incredible peace that filled my heart.  I know it was directly related to someone interceding for our family.
We covet your prayers.  Thank you!

Jethenro is scheduled to begin his next phase of chemo on Monday, August 1. A specific prayer request is that he can gain a few pounds before it begins, and not lose his appetite throughout this phase.

D Day

We are waiting around to discover if this is discharge day, or if it will have to wait until tomorrow.  I told the nurse that we owned the room by now, and that we could remodel it... we had a good laugh.

In the meantime, we continue to get meal trays that look something like this. 

The vegetarian tray has the Boccha spicy black bean patty...two meals a day... every day.  I told the Dr.s yesterday that I needed to get my son home to fatten him up with good vegan food.  She didn't deny that the hospital food was not the best. They at least have not insisted that we get meat into his diet.

Today is the last day for iv antibiotics.  We will be sent home with an expensive anti-fungal, and a few other meds in preparation for the next phase of chemo.

mom

p.s. just got word...tomorrow will be d-day.  One more hard nights sleep.

Our 2nd Home

It was not surprising that one evening as my husband walks in the door after work, that I said, "Welcome Home!"  I looked around and realized what I had said...for here Jethenro has been.... One week ago today he had the emergency laparotomy. He is healing nicely, but on i.v. antibiotics, therefore the doc has kept him at the hospital to complete the 10 day course.
Donald has spent most every night and as many days as possible by Jethenro's side.  I have been driving back and forth from home bringing clean clothes and food for him.  We have been ever so grateful for the Ronald McDonald House.  We have used the kitchen and shower facilities daily. We have developed a new respect for the volunteers and donations to these facilities.

23 staples later...

 Something to talk about! The surgeon had to look...and left the staples in to prove she had been there.. 21 staples


 The surgeon drained the fluid from the lesion  on his arm to check the type of  infection...whether it is a bacterial or fungal.  So far it appears that it is bacterial. Which is... good news. +2= 23 staples

Now we have a concern. The original CT scan showed a spot on his lung. They need to determine what it is, so please pray! Pray that the spot is gone when they do another CT scan tomorrow (Tuesday).   We do not want to have more 'necessary' or 'unnecessary' procedures ordered!

This hospital room is our new temporary home. Not sure how many more days we will be here...

Emergency!...Miracle!

My tears flow freely as I write this. My mommy heart is broken for my son.
What we thought was an allergic reaction to a protein drink has actually been a reaction to the steroids he had been taking previously. 
On Thursday a cat scan was ordered to detect any internal lesions or spots that might be the same as those on his skin.
The cat scan revealed  free air in his abdominal cavity.  This could only mean that he had lesions that were leaking into his abdomen.  He had no usual symptoms... A slight bloating, but no pain.
The only option was to open him up and repair the damage...wherever it was. The surgeon would need to physically look for the tear that could be anywhere from the stomach to the rectum.
If it happened to be in the intestines, or bowels they would have to install a temporary colostomy while the tear healed.
It is enough to be handling his leukemia... Now this!
We should have been informed immediately, and operation performed immediately but alas, communication was broken, and we were not informed appropriately.

As soon as Jethenro was headed into surgery, last night,  we texted everyone we could and called a few prayer warriors.

The operation was quick, and the surgeon came out ecstatic.She expressed that she had goose bumps.  She found no lesions.  She found soft stool....where it was supposed to be.  No constipation.  No leakage anywhere! The free air was clean! The only explanation is that the lesion or tear  had possibly been in the colon area, and already healed itself, so there had been no leakage or contamination into the cavity.  
Truly a miracle!

If only there were an alternative to chemo for this type of leukemia!

Please continue to intercede for our family. It will take a long time to heal ~with infection ever a threat.

Short Video Describing ALL

Acute Lymphocytic Leukemia

Thanks to a special friend who posted this on her blog.  She is taking the same journey with her 4 year old son.  We were both shocked to discover we were sharing such a journey together.

When we take over the chores...

...this is what happens!

Good News

We received a privileged  phone call this evening from the Dr. 

Jethenro is in remission 

However...that only determines what comes next.  He will be getting chemo for a good while yet.  We will meet with the Dr this next week to determine what the next phase will bring.

This afternoon his temperature has gone up.  We are monitoring him carefully. He may be just having an allergic reaction to a protein drink he had.

Treatment Day

Good news!! Jethenro is holding his platelet count! They were 133,000 today, still on the low end but much, much better then the last couple of weeks which means he didnt need a platelet transfusion! His H&H is still a little low and there was an option for a blood transfusion but it wasnt a need so much as an if you want. He didnt have to have IV meds today so he just got his LP. They also did another bone marrow aspiration and when we get the results we will know for sure if Jethenro is in remission and where we go from there in regards to treatment.

The bad news is Jethenro has lost 12-13 pounds in the past month. This is a concern, especially since he doesnt have anything to lose. Mom is doing some research to find out what can be used and we are hoping to find vegan/vegetarian, low sugar, healthy options. If you have any suggestions, please let us know! 

Our 2 prayer requests for this week - please pray that (1) Jetties bone marrow aspiration will show that he is in full remission and (2) that we will be able to find some healthy, vegan/vegetarian options to help him gain weight. 

Thank you so much for your continued prayer and support. It means so much to us! 

Evening Walks...

Are becoming routine
most evenings...
when Jethenro has
enough energy.

Another Week is Over--- Already??!

 

The best position for a game of Uno

 We have been watching Jethenro loose his thick head of hair this week .  Because it is not coming out in clumps, he has chosen to just let it thin out naturally. It really is not that noticeable yet.

His appetite has stayed intact, and we all enjoy making sure he has enough on his plate at mealtime. We are praying that it stays that way!

The first part of the week Jethenro was still recuperating from the port a cath surgery.   Then came chemo day just as he was starting to feel a little better. He seems to be bouncing back a little quicker this week.  He only went in for one platelet transfusion ...an improvement!  

Since he is eating well, his hemoglobin has been staying constant, which meant he did not need a blood transfusion.  

The bone marrow aspirate shows that he is where the medical team expected him to be...  Almost into remission status.  They say "in olden days he would be considered in remission", but they have a more accurate test now which shows that there are some residual cells still hanging around.

We are ready for Sabbath rest.

Your prayers are coveted. Thank you!

Hair? Or Appetite?

We vote appetite!

We hope it stays that way.
We can handle gathering up the hair...

 

Busy Days

Thursday: Roshi, Marci, Don, and Jethenro left for the hospital at 7am. They were admitted to day surgery and Jethenro had his portacath inserted. (It was an actual surgery with general anesthesia etc.)

They came home around 11 and Jethenro rested some before eating lunch. At 1:30 we all headed out to the oncology center. Apparently they were running behind schedule so Jethenro didnt get in to start his treatments until almost 3. He had his bone marrow aspiration done and then his IV chemo. The clinic where Jethenro is getting his treatments has two associate doctors and a nurse practitioner (Dr. A, Dr. B, and NP). Jethenro saw Dr. A today and because this doctor is much more cautious doing LPs in patients with thrombocytopenia, He decided that Jethenro needed more platelet and blood transfusions before he could get his lumbar puncture (chemo administered through the spine). So after the clinic we headed to the hospital to get him all registered for an early morning admittance to the PICU for the transfusions and the platelets Friday. We didnt get home until 6:30pm. Jethenro didnt do much the rest of the evening. He was pretty worn out from the days activities.

Friday: Marci, Don, and Jethenro were out the door and headed to the hospital by 8:30. He was admitted to the PICU and over the course of the day got a unit of platelets, his lumbar puncture (LP), and a unit of blood. They arrived home about 5:30pm. Jethenro isnt as tired today as he was yesterday but it has still been another long day. He is starting to experience more side affects of chemo, such as joint pain and headaches. 

We will be getting the results of the bone marrow biopsy  next week. Please pray that there will be no more blast cells.

Thank you for your prayers!

A Long Day

We awoke in the  morning  thinking we had the morning to work around the home. But  we received a phone call to get to the pediatric surgeons office ASAP for a consult that had been originally scheduled for 2 pm.
This consult  was in preparation for a porta cath insertion.

a temporary tube insertion that can be used for either drawing blood or delivering meds

By 10:00 a.m. we were in the physicians office.

The doc sent us straight from his office to the hospital to register and do the preliminary work for a 7:30 a.m. insert in the morning. Jethenro's blood work showed that he would need a platelet transfusion. It took awhile for the Dr.s to coordinate the order, and to get the transfusion delivered.

The nurse  ordered a lunch for Jethenro, so he had something to eat. Marci snacked, but Don waited until we arrived home.

By 5:30 p.m. were on our way home...

A long day indeed.

mom