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!