The Journey Continues...

Life looks different than it did in October. Thank God for that. John was discharged from the hospital in November, just before Thanksgiving. There was an urgency in this, as John had to begin proton radiation therapy no later than 8 weeks after his surgery on October 6th. The tumor was cancerous. But it was also curable. Curable means that it is treated and never comes back. 

There were 2 proton therapy places near-ish. One in Irving, TX, the other in Tennessee. Joe's family lives 20 minutes from Irving, so it was a no brainer. Joe and I made many life changing decisions in a matter of days...Joe's active duty with the Marine Corps was over. We needed to decide where we'd move, a job, insurance...decisions most couples get months to decide. We had days. All we knew was that our son needed this life saving radiation. 

So to Texas we went. We arrived, unpacked, and slept. The next day was the beginning. Appointments, appointments, appointments. Never ending. It still isn't ending. We went through 6 weeks of radiation, Monday-Friday beginning at 4am. He handled it like a champ. He wasn't nauseous or angry...he just lost his hair in the back. The rest started to grow from being shaved off for surgery.

6 weeks went by, we rang the gong...and now we just monitor.

We had an ICU stay in February due to a cold...a cold. A cold can land him in the ICU. We only left the house for appointments. Winter is dangerous now.

But summer is here, and things are better.

So far we've had 2 MRIs, and they both have been clear. We are fixing to have our 3rd one at the end of the month. If it is clear, they will remove his chemo port. He never got chemo, by the way. They also ended up getting 100% of the tumor the first time...

The oncologist wanted a 2nd surgery, but the neurologist wasn't sure. She pushed for multiple MRIs to be done...the spot the team thought was residual tumor was a healing sponge. They'd gotten it all. A miracle!

Life is getting better, more stable...John has a trach and is fed through a g tube. He can't talk, but one day he will. It isn't forever. We will start feeding therapy soon...so there's hope. Lots of hope.

The Forgotten Mom

Forgotten...

Like the dried green kale as a garnish on a fancy plate.

Sometimes that's how motherhood feels. It's not that anyone is purposefully making me feel that way. It's just how it is.

Missing out on a family vacation.

Not having a friend to dress up and go see Barbie with.

Two babies and four walls are the ones who see me the most. 

I know it's a season.

I know it won't always be this way.

But it doesn't make it any less hard going through it. 

So if you're feeling forgotten or discarded...know you aren't alone.

A Journey I Never Wanted Part 6

This isn't what I signed up for.

That's the thought going through my head at 9:26am. I've already wiped up buckets of mucus, followed with vomit, and as of a few minutes ago, blood. Most moms are feeling frazzled because they can't get their $6 coffee down without someone asking for a snack.

I'm not frazzled. I'm stripped down to the nerve. Exposed and feeling pain with every new situation that comes, one right after another. 

They say you'll never have a clean house with boys. I'd give anything to not

have human secretions on me for 3 minutes. 

This isn't what I signed up for. 

I knew motherhood would be hard. But I was only told of a hard that included late night feedings, diapers, and wondering if you're raising them right. Not wondering if you can keep them alive. 

I was told the joys would outweigh the sorrows immeasurably. Right now, my sorrows box is overflowing, and my joys box is gathering dust. 

I should be grateful. I should be, I should be, I should be. 

But right now, all I can think, is this isn't what I signed up for. This isn't what I wanted. I am so tired. I am so so tired, and running on an endless field of nails. I have no tears left in my body. I don't even know if I have anger. All I have left is misery. Any smile I can manage, I give to John. There's nothing left in me to offer anyone, including myself. 

I am empty. But I have to keep going. 

I just have to trust that the Bible is truth. Oh how I need it to be true. Please be true. It's the only hope I've got left to hold. 

Part 5: A Journey I Never Wanted

Today was an overall success. John breathed on his own for 2 hours, through his trach, and his oxygen levels stayed great. His artery IV was removed as they don't see a need for it anymore! So yay!!

And then I stupidly get on social media, and I see everyone taking their babies to the pumpkin patches...and then these things that made today good disappear. 

October is my favorite month. Not because it's my birthday month. But because it's beautiful. Who doesn't love October? 

Crunchy leaves.

Apple donuts.

Pumpkin patches.

Corn mazes.

Vibrant colors.

Sweater weather.

I had dreams of taking John to pick out his first pumpkin. We'd paint it together. He'd try his first apple cider donut. He'd pick his first apple off a tree. He'd ride a hay ride. 

I know the Bible promises to restore what was lost. I'm holding on to that. But how can this be restored? I will never ever get this time, this age, this stage of life with John back. I guess there are things I will just never understand. 

Life keeps turning for the world. But my world stopped turning. And it won't turn until this is over. 

Part 4: A Journey I Never Wanted

Good news, good news at last.

95% of the tumor was taken out during surgery. That's almost a complete resection.

His catheter was removed.

His breathing tube was removed.

He will be getting food through his ng tube tonight, finally. It's all I can think about, is how he hasn't nursed since before surgery...even longer for solid foods. 

Tomorrow they hope to take out the drain on top of his head. 

His tubes are getting less and less.

The nurse tonight said that he's been taken off his continuous pain medication drip because he cannot be transferred to a regular room if he isn't off it. So they're even talking about getting us out of the PICU. 

Steps are being taken, steps in the right direction. 

Coast to coast, friends, family, and family we don't know yet are lifting John up in prayer...it's working. God is moving in huge ways. 

People are sending gifts, even donating their own hard earned money to us for expenses. 

We are just blown away. We are speechless by God's faithfulness and the generosity we are being shown.

Today was a good day. 

A good day at last.

Part 3: A Journey I Never Wanted

11 hours and 24 minutes

That's how long the surgery lasted. I got to sit in the sunshine...not for too long, my ivory skin only needs about 3 minutes before I start to cook.

I talked with the financial counselor.

I shared the burden with family.

I ate mediocre cafeteria food.

Every hour, there was a text saying they were still working.

The surgeon finally came in, exhausted and rubbing her hands. 11 hours and 24 minutes, I'm sure they were cramping something fierce. 

They got 90% of the tumor.

Looks like an ependymoma. Usually benign. Usually recurring.

Chemo or radiation.

MRI tomorrow.

Then we waited for John to come. We waited for another eternity. Then the chaos came.

Tubes, tubes, tubes. Dried blood everywhere. I could only see the top of his head with that big bandage and the drain.

We waited for them to be done, so we could stand next to our baby. It took another short forever. 

Finally, I was summoned to come see him. So pale, so tiny, so much dried blood. Ink on his forehead. Breathing tube in his mouth, along with another tube. So many numbers on the screen. Beep, beep, beep, that dreaded noise from the NICU.

Too high of blood pressure.

He was fighting to wake up, more sedation required. Waving his little arms and legs. Scrunching his eyes.

My little fighter.

Stable through the night.

They need him to cough before they can insert a feeding tube.

He needs food. He needs his strength.

Waiting on MRI. 

The PICU is full...patients are being turned away. Where would we have gone...

This isn't supposed be happening, but it is.

One day at a time.

Day 2: A Journey I Never Wanted

My baby boy had an MRI today. He was sedated and intubated. Less than 2 years old, and he's been intubated...

When the nurses wheels him back in that big metal crib, his tiny body was wrapped in the scratchy hospital baby blankets. They were warm at least. He opened his big blue eyes, and found mine. He started to stir, and he made little croaks as he woke up. He rolled over and stood up...he hasn't done that in a while. He took a lunging step to me. And he was back in my arms. We were told not to feed him anything until we'd heard word from the staff.

So we waited.

And waited.

And waited.

And waited.

After a few hours, we finally got the clear to nurse him. It gave him some immediate relief, thank goodness.

Then we waited for several more hours. 

Two women in green scrubs came in, and said they could give us a sort of plan going forward. Surgery tomorrow. We already knew that.

I looked at one of the pediatricians, and said how I was looking at all the hours of waiting as a plus. Usually bad news comes fast. She had a weird look in her eye, and said we have a long road ahead of us.

I hate that phrase.

We waited some more.

Finally another green scrubs came in with a set of blue scrubs. This was it.

Green scrubs spoke in a hushed voice. He asked if he could sit down. The air left my lungs. Sitting down is never good. 

He asked me to retell the tale of how we came to be here. I told him. He took a breath.

Most likely cancerous.

High grade.

Can be life threatening.

Chemotherapy.

Another stomach punch. Another thing that isn't supposed to happen. We aren't supposed to be here.

After a blurry eyed, nodding head, questions with no answers conversation...we awaited the neurosurgeon.

She came a few hours later.

Common location.

Attached to spinal cord.

Can't get it all.

Drain.

Shunt.

Treatments to follow.

Possible second surgery.

Long. Road. Ahead.

And everyone keeps asking:

"Can I get you anything?"

"Are you okay?"

"What do you need?"

All well intended and well received. 

My thoughts are as choppy as the paragraphs on this page. 

I feel akin to Job.

We haven't even been married 5 years yet...

Long distance relationship over an ocean.

2 moves, 1 across country.

Deployments.

3 months of zero contact.

1 emergency c section

1 NICU stay

Unexpectedly pregnant with baby #2 (ha, now I'm gonna see who actually reads my blog)

Stressful career change

Exiting the military 

Half way across country move

Life flighted with my baby

And now....our baby is having brain surgery tomorrow.

This has to be a dream?? Please be a dream...

Despite it all...I choose to move forward. Despite every pound of my flesh screaming the opposite, I choose to trust the Lord and His promises. 

"For I know the plans I have for you, says the Lord. Plans to prosper you, not to harm you. Plans to give you a future and a hope."

I'm speaking that over John tonight as I nurse by baby for the last time in possibly quite a while.

As I hold him close for possibly the last time in a while. He is going to have a lot more tubes in him and medical equipment surrounding him. 

God...I don't know how I'm going to get through this. But somehow, I will. I trust you to get my family through this.