My friends, we are headed back to clinic this morning.

Would you please pray specifically for a quick blood draw and IV placement? Justin does not have a pic line placed yet and the many needle sticks are causing him so much pain, bruising and fear.

Thank you. Deep breath. Here we go…

The news is beginning to sink in.

Justin is not in relapse. He is still in remission. He will not have several more years of chemo. We do not need to start looking for a bone marrow donor match.

He has a virus. A stinkin’ virus.

It will be a tough few weeks until this is all resolved. But that is much, much better than a few more years.

I was never the alarmist, germophobic type mom. But I just ordered almost a hundred dollars worth of antibacterial wipes, spray and soap.

I know you can’t control these things. But me and my Amazon prime order are certainly going to put up a good fight against future viruses.

Today I am praying thanks, cleaning and pushing yogurt on Justin to help his stomach handle the siege of antibiotics.

Again, I thank you for unparalleled support and faithfulness to prayer. I will continue to update as we move forward in recovery.

I write from our backyard, where I am soaking some sun into my vitamin D deficient, pasty, hospital pallor. I can see that my lilac bushes have bloomed again. And I can’t help but quote a friend who is now with Jesus.

“God is good. In all things. All the time.” ~Andrew Franklin

Justin has a virus!

Viruses in cancer patients can cause all sorts of problems, including bone marrow suppression (where blood cells are made).

I honestly did not think this would be the outcome. Apparently, Justin’s doctors didn’t either as they ordered the bone marrow aspiration before the blood tests for viruses.

Justin is not in leukemia relapse. He is just  very sick with a nasty virus.

Justin did not need a transfusion today! But his red blood cell count did drop a little so he may need one Wednesday when he is checked again.

He will also need to continue with antibiotics and intravenous immunoglobulin to treat immunodeficiency. I will be keeping him home in a bubble made of Lysol wipes and limiting visitors.

There is still a major issue with finding veins and IV placements. He endured three sticks today. Justin will have a pic line placed in his arm until he is fully recovered from the virus and bone marrow suppression.

I am extremely relieved, just also very exhausted from the emotional rollercoaster.

Our prayers have been heard and answered. Thank you for staying with us. GOD IS FAITHFUL.

Justin was very sick to his stomach last night. I think it’s probably the switch from IV to oral antibiotics. I will talk to his doctor today about a possible alternative.

We are headed out to clinic for his bloods to be checked and possible transfusions.

I am feeling a little refreshed after two nights in my own bed. For whatever reason, I decided to clean out my closet last night. Maybe because it was a disaster area or maybe it was that need to control something thing.

Think I had clothes from the 80’s in there. Before you call the Hoarding: Buried Alive people on me, I am happy to say nine bags of give-aways or throw-aways are packed and ready to go.

Justin rested in bed among pretzel crumbs, while I sorted.

Distractions can be a good thing.

We read a devotional with the kids last night about Joseph. If ever there was an example of God using evil for good, it would be his life story. Sold out by his own brothers into slavery only to become a powerful ruler in Egypt, second only to Pharoah.

Not that I want Justin to rule Egypt. I’d just like him to not be sick anymore.

Thank you for continued prayer and support.

 

We are happily settled at home.

I went out to run errands, but mostly to get a minute to myself.

Mom left me chicken, pasta and salad for dinner.

But I ate cocoa pebbles. Two bowls.

Thank you, again, for amazing support. Please stay with us, in prayer, as we continue with outpatient treatments.

We are going home! Justin bloods are stable enough to go home until Monday.

He will need to be monitored closely throughout next week and likely beyond. But we will be able to do it as an outpatient at the clinic.

We will need to come back to the main hospital next week to have a pic line placed in his arm so we won’t have to continue with traumatic IV placements.

We are still waiting on some results but his doctor anticipates Justin will need to have another bone marrow aspiration to retest in a few weeks.

We still don’t know exactly what’s going on, but he is stable enough to go home. This is a miracle to me! Please continue to pray for us. The next several weeks will likely be difficult as we care for Justin at home.

But, for now, pray a prayer of thanks with me. And keep believing in the power of prayer. God is able and God is good.

 

 

So here is where we are. Justin’s doctor does not anticipate any definitive answers over the weekend.

Justin’s blood counts will be checked today as they have been everyday. If he does not need a transfusion, we can actually go home and continue as an outpatient Monday at the Voorhees clinic.

Of course, we would need to be very careful because he is neutropenic, meaning his white blood cell count is extremely low and his body would not be able to fight any viruses or infections.

But our family could be together and we could sleep in our own beds.

Here’s hoping…

I don’t know if we can say we are getting a miracle quite yet, but it sure is great news.

 

The bottom line is that they still don’t know.

Justin has abnormal cells in his bone marrow but they are not the same as the leukemia cells he had before.

They are now testing for genetic abnormalities of his bone marrow, also called bone marrow failure.

However, they haven’t completely ruled out relapse  yet.

They are also testing him for rare viruses that can suppress bone marrow.

I get the impression it’s been a hot topic down in pathology. Even the doctor seemed annoyed. It’s a conundrum. It happens in the medical world. Even at CHOP.

The good news is that Justin is feeling fairly well after many units of blood and saline.

Also I washed my hair.

God knows what is going on. We have not been told his cancer is back, so, for now, we will delicately hold onto that.

We were able to get out of the room and take a walk earlier. Justin says, “May the Fourth be with you, but it’s only funny if you say it like Daffy Duck, Mom!”

Of course.

 

What is it like?

We live in fluorescent lights and pastel colors.

We are experts at maneuvering an IV pole.

We can say a whole lot to each other without saying anything at all.

We know how to manage siblings and pets, maintain our homes and jobs from a smart phone.

We are very good at smiling in front of our cancer kids while freaking out on the inside.

We know how to make crucial decisions on very little sleep or food.

We live on caffeine.

We are experts at reading doctor’s faces because, let’s be honest, they never REALLY answer questions or say anything we can actually understand.

Which makes us also experts at doing our own research.

And I have to stop my musings right there because a nurse just walked by and recognized me from the DC trip. (I am taking my first break out of the room in a sitting area where there are actual windows looking outside. Our window looks over then atrium.) She was also there advocating and shared that she is a cancer survivor. She was treated at this hospital and is now a pediatric oncology nurse here. How cool is that!

And I am convinced it is no accident that she happened to be walking by me.

Hope.