Jon's pituitary tumor...our journey over the past 11 weeks

On March 1, 2012, Jon went to the optometrist because he was experiencing some blurry areas in his peripheral vision.  Neither of us were prepared for the possibility of a tumor growing on his pituitary.  Yet even from the very beginning, God placed knowledgeable health care professionals in our lives.  The optometrist Jon saw had done research on pituitary tumors while completing his training. After ruling out other possibilities, he told Jon that he was experiencing bitemporal hemianopsia (a partial blindness where vision is missing in the outer half of both the right and left visual field) and that the most common cause was a pituitary tumor.  Referrals were sent, the MRI was done, the diagnosis confirmed.  The neurosurgeon's office called April 2 and the appointment was scheduled for that afternoon.  In the neurosurgeon's office, we saw the tumor on the MRI.  The tumor had grown around the two main arteries going into Jon's brain and was pushing up against his optic nerves.  After 2 more appointments (one with the endocrinologist and the other with the opthomologist) that afternoon scheduled by the neurosurgeon, Jon took Jude to his hockey banquet.

The next day at noon, he was admitted to the neurosurgical unit of the hospital, where he completed another battery of tests...

 ... and got his "cheerios" (fiducial markers) to aid the surgeon in navigating through Jon's head.

 The kids came to visit Jon that evening since we knew he could be having surgery the following day and would not feel up to having the kids visit.

On the way out of the hospital parking lot, with Jon in the hospital awaiting neurosurgery, our van started stalling...repeatedly...

Computers and vehicles are great when they work, but frustrating when they don't.  So, I prayed that we would get home safely.  We did.  After the kids got in their jammies, there was a knock at the door.  Our sweet friends had arrived with their daughters to deliver a large basket FULL of toys, games, activities and treats to keep the kids busy in the coming days.  The week had been emotionally overwhelming.... the kindness and love of friends brought me to tears.

Thankful and with the kids all tucked in bed, I sent off a simple Facebook message asking for mechanical advice for the van... I'm pretty clueless on how engines work.  I'm okay with that :)  Over the next hour, I got advice but also offers to use friends' second vehicles so I didn't have to worry about fixing our van or renting another vehicle.  Another family that we knew only from attending preschool together offered to come pick up the van to try to diagnose the problem for us. More tears. I knew that in our upside-down family-life, God was caring for us and providing for us through those around us.

Until they called the unit to tell Jon's nurse that they were coming to get him, we didn't actually know if he would be having surgery on Wednesday.  We spent the morning playing Monopoly Deal and walking around the hospital.  Once they called, Jon only had time to get into his hospital gown before they came to get him. I walked down with the porter as she wheeled him down to the surgical suite.  Then, whispering prayers to our Heavenly Father I dashed off to pick up the kids from school and make childcare arrangements for the evening.  Abby stayed with her friend Kaitlyn and the boys stayed with their buddy Asher.  Once the kids were settled, I made my way back to the hospital to wait for Jon to come back from surgery.  They took him in around 3:15 pm, so I expected to see him again in the early evening.  As the hours crept by, I continued to pray (as did so many amazing friends and family).  The surgery had its risks... stroke, blindness, death...

This is where I waited, and prayed, and paced.  I spent some time with J. and his family.  J. was a patient in the neurosurgery unit,  a friendly 60ish man born deaf who was anxiously waiting to hear when he would have surgery to remove the tumor that was causing seizures. I lifted prayers for J. as well.

Jon's surgery was the Wednesday before Good Friday.  Good Friday was the day, 9 years ago, that we said good-bye to Jonah.  March and April are full of hospital memories.  Although I fought to stay positive, it was difficult to not think of what could happen if the surgery did not go as planned, especially when 8 pm became 9 pm and then 10 pm...

Friends called, texted and came by to just sit with me, bearing books, music and blankets.  Then I saw them wheeling his stretcher back to the unit.



It's funny to think about how we considered ordering the bedside TV in case Jon made it back from surgery before Survivor came on :)  When he came back, his nose was packed, but leaking discharge, he was groggy, his head and face hurt, his mouth was insatiably dry and he had a catheter to monitor his urine output (until they knew if there was any damage to the pituitary during surgery). The nurses got him into some stylish compression stockings to prevent blood clots while he laid in bed for the next day or so.

Even if it had not been hours after Survivor aired, he would not have felt like watching. I sat with him, helplessly spooning ice chips into his mouth but ridiculously thankful that he didn't have a stroke during surgery and that he still had some sight. 

The kids were well-loved during Jon's hospitalization. Different friends offered to care for them for throughout the week so I could be with Jon.

Friends took the boys for the afternoon so I could go with Jon when he was admitted to hospital
Friends took the boys for the evening of Jon's surgery and then just tucked them into bed when the surgery took longer... the playdate became a sleepover and there was no hesitation
Friends picked up the boys to take them to playschool, then took them home for the afternoon
Friends fed Abby, helped her with homework, got her to and from her Brownie outing, made her lunch and then got her to school
Friends spent their days off to care for the kids 
Friends lent us their van for as long as we needed it
Friends offered to take our van to diagnose the problem and others offered to come get it to take it to a mechanic
Friends brought food and flowers, journals and activites for the kids
Family (Jon's mom) arrived on Friday to help with the kids until Jon was back home and then left her car for us.

Friends and family, far and near called, texted, emailed, prayed and kept our family in their thoughts. Facebook became the easiest way to give updates. Reading responses to the updates was truly encouraging. Thankful.

I continue to be humbled by the tremendous outpouring of love and care by our friends and family.  We are incredibly blessed. 

The next few days were really rough for Jon... he was nauseous and sick.  The codeine made him more nauseous so he had to go to regular Tylenol for the pain.  I've sat beside kids' bedsides as they've been ill, but sitting beside the love of my life was different.   My strong husband felt miserable and discouraged, hooked up to ivs, uncomfortable tubes and compression stockings.  I would jump up to get him gingerale or ice water to feel like I was doing "something", but most of the time I just sat and held his hand as he slept.  After I finished my book, I started the Hunger Games (the book I bought for Jon).  I realized how much Jon had been sleeping when I quickly finished the first book of the trilogy and had to find the next two :)

By Friday, Jon was up and walking around a bit.  I got to be his escort :)  Friday evening he moved out of the observation room and into a semi-private room.  The kids sent decorations for his room.  Saturday afternoon he finally got rid of his "friend", the catheter.  We went for an extra long walk downstairs to Robin's Donuts.  Jon walked there on his own, but I brought him back in a wheelchair. The short walk completely exhausted him.

Easter Sunday the kids came to visit Daddy for the first time since his surgery.

Abs and Jude had decorated eggs for him (Abby's says, "I [heart] my Dad")

Stents had been placed in Jon's nose to help him breathe better (which is why his nose looks so much wider).  He was instructed not to sneeze (or to sneeze through his mouth) and he could not blow his nose.  He would often wear a "mustache", a piece of gauze under his nose and taped to his face to catch any discharge.  Since the surgery was performed through his nose, there was a lot of mucus and dried blood that needed to come out.

On Easter Monday, Jon came home :)

The kids helped him shave his tumor beard!

Jon spent the next few weeks recovering.  Just when he started feeling better, he got a nasty sinus infection.  Thankfully, the strong antibiotics knocked it out quickly.  After he saw his endrocrinologist, he was instructed to start weaning off the hydrocortisone as his hormone levels were all back in the normal range.  The hydrocortisone was given because removal of the a pituitary tumor can result in the deficiency of different hormones from the pituitary.  Although this is often temporary, hydrocortisone is prescribed to stimulate the adrenal glands to produce cortisol. Cortisol helps control the use of protein, sugar, and fats in the body and also helps the body handle stress.   Weaning off the hydrocortisone gave him further headaches and fatigue. 

It's now the middle of May, a little over 6 weeks after Jon's surgery.  His body is adjusting to the lower dosage of hydrocortisone.  His vision is much better although we won't know how much of his vision has been restored until after he sees the opthomologist again this coming week.  He's going back to work on Tuesday. 

Looking back on the past 2 1/2 months we are thankful for so much...

-AMAZING friends and family who blessed us in so many ways

-A benign tumor

-Fabulous nurses who were friendly, competent and professional (and who didn't mind when I hung out with Jon outside of visiting hours)

-Jon's neurosurgeon, endocrinologist, ENT, optometrist, opthomologist, and our family physician who all worked together to restore Jon's vision as quickly as possible

-Restored vision & life

-Our faithful God who carried us through it all... God is always good, even when things do not go as planned.  I'm so very thankful that this time our hospital memories are good.  Despite Jon's miserable days post-surgery, he is home and his health/eyesight is being restored.  We are so thankful.