Tuesday, March 13, 2012

Still Can't Believe This Happened To Me.....Right After Shriners, Part Two

During the first few days of my stay, we visited with lots of doctors and nurses.  With the exception of the ER doctor, most of the hospital staff was so friendly.  It is true what they say about people in the South.  In general, they are hospitable, super friendly and love to talk as if you’ve been friends with them all their lives. The nurses were even friendly and kind to this lady from “liberal” Oregon who was supposedly admitted for an STD J.  But when Sunday rolled around, the situation was not looking good for me.  My primary doctor at the hospital, an OB/GYN, met with Wes and me early that morning.  She had been monitoring me now for a few days and visiting with us pretty regularly.  She sat us down and said, I would like to re-do your tests, with your permission.  My gut feeling tells me this is not an STD.  You are not responding well, and your vitals are not good.  You are developing pneumonia.  Not only this, but you seem like a very different couple then the couples we normally see with this “problem”.

This was a pretty bold decision on her part.  But of course, we knew the diagnosis was wrong, so we agreed to have the tests re-taken.  They started testing me on Sunday afternoon.  The results came back.  Indeed, my appendix WAS the issue.  It was leaking infection all over inside my abdomen.  The appendix needed to be surgically removed as soon as possible.  Wes’s sister had a neighbor who, just a few years earlier, had died from an infected appendix that had been leaking for days without anyone knowing it.  We were somewhat alarmed, but at the same time, glad to finally have the right diagnosis. 

That evening, I went into surgery.  The next thing I remember, I was waking up, and felt like I couldn’t breathe.  People were hovering right over my face, trying to put a mask on me; it was an oxygen mask.  The mask was covering up my face.  All I knew is I couldn’t breathe and in my delirium, I thought it was because something was covering my nose and mouth and blocking my air.  So, I did what anyone normal person would do – I kept pulling the mask off.  The anesthesiologist would place it back on…I would pull it off.  I don’t remember this, but the anesthesiologist told Wes that I got really rough with him.  So uncharacteristic of me!  Turns out, my pneumonia was pretty severe by this time, and I was not breathing well at all.  The surgeon and anesthiologist immediately met with Wes, and said I needed to be brought to ICU.  It was a scary time for him, being told I was not breathing well and not doing as well as they had hoped.  And it was a scary time for my family and friends at home who were being kept apprised of the situation through texts and Facebook.

I did stabilize however, over the next 24 hours.  The surgery recovery would have been fairly straight-forward, but the pneumonia had really taken hold.  I was required to spend 5 more days in the hospital, receiving breathing treatments every few hours, close supervision, and antibiotics.  I don’t remember a lot during this time, except coughing and not being able to breathe well.  One thing I do remember very vividly though.  Sometime after surgery, I walked into the bathroom, looked in the mirror, and what I saw was a different person staring back at me!  They had pumped me so full of fluids, and the fluids had been retained, for the most part.  I had gained at least 30 pounds.  If I were not so sick, I am sure this would have been very alarming to me!  The staff assured me that the weight would all come off eventually, and I would look normal again.  Wes did not know whether to laugh or cry!  My normal frame was now twice as big, at least it seemed that way to us.  When I finally was released from the hospital, none of my regular clothes even remotely fit.  I remember Wes taking a dress of mine, and stretching it out as hard as he could.  I was able to squeeze into it then.  And I had a pair of boots, that I could just barely fit my feet into.  My legs were so swollen I could hardly walk.  All this was so ironic, since I had hardly eaten anything for almost 2 weeks. 

We were given permission to fly home a few days after my release from the hospital.  I waddled through the airport, still so swollen and hardly able to walk.  It was humiliating, looking that way and having to walk through an airport.  When I walked through the door of my house, my kids were there.  I know they felt bad, but they couldn’t help but laugh at my appearance.  It was quite a shock to them!  Sure enough though, the water weight came off and I went back to normal.

I relate this experience to add another layer to all the experiences we have been through that have taught us great appreciation for health and life, and family.  And for the prayers of the saints who were lifting me up continually during this time.  I am very thankful for the people at home who were praying.  The whole situation could have turned out differently – in a bad way.  It took me a few more weeks to fully recover from pneumonia.  My church family provided meals for my family and me during this time.  And once again, we came through a trial with a testimony of God’s goodness to us, and of his rescue from a dangerous, even life-threatening situation. J

Monday, March 12, 2012

Still Can't Believe This Happened To Me....right after Shriners Part One

Daniel’s story is basically up to date – except I forgot to mention that after his massive back surgery, he was told not to do anything strenuous for 8 months.  That meant no sports, no biking, not even jumping on a trampoline.  He handled the restrictions well.  But every year our whole family goes on a bike trip through the San Juan Islands with our church youth group, and it was looking in 2010 like Daniel would not be able to ride his bike.  But at his 5 month check-up, the surgeon was so pleased by Daniel’s recovery, that he gave him permission to start riding!  So Daniel was able to ride his bike on the bike trip.  And in fact, he kept up with just about all the other kids, even though it almost did him in.  Throughout the trip, he experienced tremendously painful foot and leg cramps that woke him up at night.  But he was determined to keep riding the whole trip through and he never gave up.  We were, and are, so very proud of him!

The rest of this post is about me.  J A few months after our Shriners experience, Wes had a business trip in Nashville, and as usual, he took me along.  We had previously gone together on business trips to Orlando, Montana, Sun Valley, ID, San Antonio, and Nashville.  But this Nashville trip turned out much differently than we had anticipated.  On the first day of our trip (it was on a Sunday), we arrived in Nashville, and immediately started walking all over the city.  It was a great day.  On the second day, Wes left in the morning for his meetings, and I slept in.  Upon waking up and getting ready, I started feeling achy.  It got progressively worse through the day, and so I walked to a drug store for some Tylenol and Ibuprofen.  The medicine helped, and when Wes was finished that evening, we both wanted to continue exploring the city.  We walked ALL over – for miles.  I started to feel achy again.  When we settled in for the evening, every square inch of my body was so achy, I could hardly lie still that night.  The next day the fever started, and I couldn’t stop shaking.  As soon as the pain reliever/fever reducer would wear off, I started shaking uncontrollably again.  So, I ended up spending the next 3 days in bed, with the exception of being brave long enough to go out to dinner. 

We were scheduled to fly home on Friday.  We both just wanted to get home.  But when I woke up Friday morning, I felt 10 times worse.  Every time I got up, I was extremely nauseous.  I also noticed, for the first time, an ache in the area of my lower right abdomen.  I told Wes this, and we both suspected perhaps I had appendicitis.  Still, we drove to the airport, and as we were pulling into the rental car area, we both knew I would not be able to make this flight.  Wes immediately called his sister, Karen, a nurse, who had already been apprised of my situation throughout the week.  Wes told her how I was feeling, and she confirmed what we were both suspecting.  Something was really wrong with me, and we had better stay in Nashville.

Wes ran into the airport and cancelled our flight.  Then he immediately took me to the nearest hospital.  I was so nauseous and in so much discomfort.  I told the nurses there that my opinion was I had appendicitis.  As soon as the hospital staff brought me in to a regular ER room, I met with a  doctor who gave me medication for my nausea and pain.  He told me the first step would be to get a CT scan to see what was going on in my abdomen.  They gave me some kind of medicine which I immediately threw up, but eventually I was able to keep enough down for the test.  As the pain and nausea medication kicked in, for the first time in a week, I felt better, and I admit I was a little euphoric.  

The ER doctor came in next to visit with me about the test.  Wes had stepped out of the room and was not present at this time. What he proceeded to tell me was such a shock.  It was a good thing I was so drugged up!  He said, there is definitely something going on in your lower right abdomen.  It looks as if your ovary is surrounded by infection.  I don’t think your appendix is the issue.  What you have more than likely, is a bad case of venereal disease.  WHHHAAAAT?  I assured him that was not possible; it must be something else.  He assured me that it is quite possible – for if I hadn’t had any partners, then I must have contracted it from my husband.  The implication was that my husband had been fooling around on me and had not told me.  When Wes walked back in, the ER doctor had left.  Now remember, I was pretty drugged up, and feeling pretty calm.  So I casually told Wes what the ER doctor had just told me.  He was irate!  I didn’t ask him any questions or express any suspicion.  I knew my husband almost as well as I knew myself.  Wes was understandably very angry.  He found the ER doctor.  I am not sure of the words that were spoken, but it was not a friendly exchange. 

Regardless, I was sick and needed to be admitted to the hospital.  The hospital staff immediately started pumping me full of antibiotics and lots of fluids.  The next day was Saturday, and I was still not getting any better.  I FELT somewhat better from the medication, but in reality I was getting sicker and sicker.  Wes was very concerned, he was still upset and confused by my diagnosis, and at a loss for what to do.  I was out of it most of the time, and didn’t realize how sick I was.  And I also didn’t realize that I was starting to show symptoms of pneumonia.  All the fluids I had been drinking over the previous week as well as all the fluids being given me in the IV, well some of it had settled into my lungs. But the hospital continued to treat me for a venereal disease.  By the time Sunday rolled around, my health situation had become critical.

To be cont'd...... 

Friday, March 2, 2012

Shriners Hospital/Halo Traction Part Three

After 2 months in traction, the time came for Daniel's final surgery to correct the scoliosis - this surgery would involve placing rods on either side of his spine, screws in the vertebrae, fusing the vertebrae together, and of course, removing the halo.  The fusion was necessary to prevent Daniel's spine from reverting back to its old shape.  Daniel was ready to be done with it all, so he faced the impending surgery as calmly and stoically as ever.  

Nursing students are a constant presence in the hospital.  We befriended a few during our stay.  One male nursing student asked if he could interview Daniel and me for a research paper. He was struck by how well our family seemed to be coping with all we'd been through and how close our family was.  We got to know another nursing student, named Bonnie, during our stay.  I recall once when I had contracted a bad case of strep throat, that she asked if she could pray for me.  She prayed with us on a few different occasions.  Bonnie had requested to be present during the entirety of Daniel's surgery.  I believe she was required to observe a surgical procedure and she chose his.  She told Daniel, "I will be with you when you go to sleep, when you wake up and will be praying for you throughout."  What a comfort this was to us.  The surgery ended up taking so many hours that she had to leave before the end to attend a class, but we so appreciated her being there, and for praying.

The day came for the surgery, we said our goodbyes to Daniel, and proceeded to wait.  I am pretty sure many other families would be waiting on pins and needles in this situation, but we had been down this road so many times before - with much more serious and life-threatening implications - so we were not feeling the usual nerves or fear, although we prayed a great deal.  The surgery lasted for MANY hours - I think around 12.  We really had no idea how difficult the recovery would be this time.  Although several of his previous surgeries involved tumor removal and were extremely risky, this surgery was the most physically invasive one he'd ever had.  He was under anesthesia for 12 hours, which brings its own set of difficulties during the recovery process.

Daniel, of course, was in a great deal of pain afterwards.  He couldn't move on his own, so he had to be rotated by us or by the nurses, from one side, to his back, to his other side, continually, to prevent bed sores.  The anesthesia affected his stomach, so he felt constantly nauseous.  Even after the nausea wore off, he was not allowed to eat for 4 days.  He craved Cocoa Crispies, and talked about them all the time.  When he was finally given the go-ahead to eat some solid food, we made sure we had Cocoa Crispies on hand J.  Daniel weighed only 60 pounds before the surgery, and lost 10 by the time he left the hospital.  He was skin and bones, and it took many months for him to gain back that 10 pounds.  After several days, Daniel was finally able to try sitting up in a chair, but any movement was still very difficult and painful.  Daniel had already been in the hospital as an inpatient for 2 months.  He just wanted to feel better so he could go home.  The recovery was painfully slow – too slow, it seemed, his his mind.  We had to encourage him to keep fighting and working hard- that he WOULD get better and it would get easier. 

On one particularly difficult day, a music therapist dropped by.  She wanted to sing for Daniel.  At the time she walked in, Daniel’s Shriners teacher, Eric, was in the room visiting, Elijah was there, and me.  We were all gathered around Daniel’s bed.  The music therapist had a list of songs, but Daniel hardly recognized any of them.  But he did recognize one  - “Lean On Me”, and so asked her to sing that one.  She began to sing and play her guitar – it was beautiful.  We all joined in.  Soon tears began to flow down Daniel’s cheeks as he took in the words being sung right to him – “Lean on me, when you’re not strong – I’ll be your friend, I’ll help you carry on….”  By the end of the song, all of us were crying.  Music is a powerful tool for healing, and music was a special gift to Daniel that day.

Eventually, Daniel did grow stronger and began to walk around a little.  This lifted his spirits and his recovery started to pick up speed.  He was so happy (we all were) the day he was told he could go home.  Finally, he could see his house, his room, his friends, and his cat, Benny.  Overall, the doctors expressed a great deal of pleasure and satisfaction with the improvement to Daniel’s spine.  It was more than they had even expected.  Praise the Lord.  We are so grateful to God for taking care of Daniel during this time, and for the progress that was made.  One thing I forgot to mention: the entire stay, surgery, everything was free.  Shriners is a donation-based hospital, and the surgeons, the best in the business, volunteer their expertise.  We are so grateful to the Shriners organization – they do amazing work for children who need special procedures, not normally covered by insurance.  God is good and we give him the praise for graciously bringing us through to the other side of yet another trial!

Friday, February 17, 2012

Shriners Hospital/ Halo Traction Part Two

There were several highlights in our stay at Shriners.  Some of the them included developing friendships with the other patients and their families. One family came in about halfway through our stay.  Their 7 year old son, David, needed traction to try and correct scoliosis due to a bone disease.  Daniel was able to befriend David during this time, and sympathize with him like no one else could.   They would often hang out, play board games and video games together.  And Wes and I related our experiences and offered our advice to David's mom and dad.  Alex was another special patient to us. Complications had arisen from a major surgery to his spine, and he developed an infection and a spinal fluid leak.  He was required to lie in bed for days at a time.  We tried keeping him company and distracting him during those long days in bed.  Myrissa also came in for halo traction.  She and Daniel became friends and spent a great deal of time in the school room together.  A girl named Riley came in during our stay.  She had bone cancer.  We got to know her and her family pretty well during our time in the hospital together.  Riley is now in heaven.

The nurses were special to us.  We soon became familiar with the work shifts of all the different nurses and when to expect them.  They were great company, and were so friendly and kind.  Elijah had a few nurses wrapped around his finger, and they would give him pop and other treats any time he wanted.  As a result, we all had to work on bringing Elijah's weight back down after our hospital stay was over!  :)  Brooke was in her last year of high school at the time and had already decided she would major in nursing.  Many of the nurses encouraged her and gave her great advice pertaining to college and a career in nursing.  And of course, all the nurses became intimately familiar with Daniel's needs and preferences, and were always there to make him comfortable, keep him entertained and happy.  We love them all.

One of the really big highlights for Daniel and for our whole family, was when Daniel's youth pastor brought all the kids up for youth group meetings in the hospital lobby. This happened twice. Daniel was able to see all his friends again and participate in the youth group meetings he loved and missed so much.  At the end, the kids would gather around Daniel and have an extended time of prayer for him. These visits broke up the monotony of being cloistered in the hospital.  Many other people came by to see us.  We had visitors several times a week, and many brought us meals.  It was so nice to get a break from cafeteria food!  

One day, close to the end of Daniel's stay, the doctors had finally been able to rig up a traction wheelchair so Daniel could leave the hospital for several hours!  We got on a bus and explored
downtown Portland as a family.  I can't imagine how good it felt for Daniel to get out of that hospital.  It was Valentines Day.  We ordered some fancy desserts at one of our favorite restaurants, Jakes Grill.  We got ready to pay our bill, and the waiter said that one of the tables next to us had picked up the tab - because they were so blessed to see Daniel, in his situation, looking so happy and having such a good time, and they wanted to bless us in return.

About a week after Valentines Day, a surgery was scheduled for Daniel.  The halo traction had been remarkably successful at correcting Daniel's spinal deformity to a great degree, but the next step in the whole process would certainly be the hardest.

to be continued.....

Friday, February 10, 2012

Shriners Hospital/ Halo Traction Part One

The next major event in Daniel's story took place in January 2010.  Prior to this time, we had been noticing a progression of scoliosis caused by all the spine/spinal cord surgeries.  Daniel's scoliosis started out fairly mild but eventually became very severe, and would only continue to worsen until his internal organs were compromised.  Daniel's doctors at Doernbecher referred us to a surgeon at Shriners Hospital. After several appointments, Dr. Krajbech at Shriners mapped out a course for repairing the scoliosis, but it would require at least a 2 month stay in Shriners Hospital as an inpatient.  Daniel would not be able to leave the hospital.  For 2 months.

So, we started making the mental and physical preparations for this huge transition, by looking for a place to stay.  Our niece's in-laws just happened to have an empty condo for sale about a 3-minute drive from Shriners, and they very generously offered to let us use it for the duration of Daniel's hospital stay!  Since the condo was empty, we would need to find our own furnishings, dishes, etc.  My sweet facebook friend, Erika, took this task upon herself by asking members of her church to help supply what we needed.  And they did - we were given several pieces of furniture, dishes, a vaccuum, and many other things we hadn't even thought we would need, to make our stay more comfortable.  I am still so thankful for the people who lovingly sacrificed to meet our needs, without even being asked.  God is so good.

Once we got moved into the condo, Daniel was admitted into Shriners.  This took place on January 4th.  A surgery was scheduled on January 5th for a halo-placement.  This is a heavy, circular piece of metal that has screws all around it that are screwed into the skull.  Yes, it sounds like a torture device and looks like one too.  The surgery went well, but when Daniel started waking up and we went in to see him, we were taken aback.  It looked so painful.  Fortunately, the pain was well managed by medication the first few weeks after surgery, and eventually Daniel's skull got used to the device, and it no longer gave him pain.  Once the halo was put in, Daniel had to be constantly hooked up to weights.  The weights were attached to a pulley system that pulled on Daniel's halo from high above his head.  Halo traction, if successful, will eventually straighten out the spine.  At first, about 10 pounds of weight were added to the halo, but eventually more and more weight was added until he had about 35 pounds pulling on the halo attached to his skull.  Daniel had to be hooked up to the weights at ALL times, even while sleeping, and while taking a bath!  A physical therapist at Shriners had invented a portable halo traction walker with wheels that allowed halo patients to walk around while still hooked up to traction.

The whole traction process was very cumbersome and tedious at first, but we all got used to it.  Once Daniel recovered from the initial surgery, we settled into a routine.  Wes stayed in McMinnville during the weekdays and traveled up on the weekends.  Our other two kids went back and forth between staying in McMinnville, and staying in Portland.  And I stayed with Daniel 24/7, right in his hospital room :).  Shriners is connected by a labryinth of passageways to OHSU and Doernbecher Hospitals.  Once we were taught how to get from place to place (it was kind of like a maze), Daniel and I did a lot of exploring.  Everyday, we walked to the other hospitals, with Daniel hooked up to his traction "walker".  He eventually got used to the walker with wheels, and became somewhat of a daredevil.  The nurses were constantly telling him to slow down!  One time he was strolling too fast and tipped over, his heavily weighted haloed head smacking the ground.  That was scary for both of us - and it only happened once for him to learn his lesson!

Many children at Shriners are required to stay for extended periods of time, so there are school teachers who work at Shriners full-time to help the children keep up with their studies during their stays. The school room has computers, lots of books and LOTS of games.  Because I have home schooled Daniel all his life, I brought all his school books from home and continued to teach him myself.  We didn't venture into the school room much at first.  But the teachers there came down to our room over the first several weeks and we started to get to know them.  Eric and Glenda are their names.  They eventually convinced us to spend more time in the school room, playing games and reading books.  By the end of our stay, Eric and Glenda were helping with Daniel's school (and Elijah's too), and Daniel was spending much of the weekdays down in the school room with them.  I can't even begin to tell you what a blessing Eric and Glenda were to us.  They both know Jesus intimately (which was a HUGE blessing to us), and they were very bright lights in what could have been a dark situation for us.  They made our stay there so much lighter and even pleasant!  They taught us to play many fun games, they made us laugh and were in-house friends, constantly there for us.  To this day, I love them both so dearly.  Eric, who was 31 at the time, in particular, developed a special bond with Daniel.  They became fast friends and bosom buddies, and we have had Eric over to our house several times since we left the hospital.  My boys pretty much want to be just like Eric when they grow up :).  

to be continued (soon, I promise).....

Friday, October 8, 2010

Daniel's 2007 Tumor Surgery - Part Two

In the weeks following Daniel's MRI, I carried a heavy heart everywhere I went. Dr. Selden made it clear that the surgery on Dec. 31st could result in a loss of motor function and coordination, and even temporary or permanent paralysis. I had to continually fight off the temptation to fear the worst. Nevertheless, Christmas was approaching and we wanted to give Daniel a chance to have some fun before his impending surgery and recovery. Daniel's spirits didn't seem to be affected much by the news. He continued to let mom and dad carry the heavy burdens, while he remained almost as carefree as ever.

A few days before Christmas we took a trip to one of our favorite family destinations - the Metolius River, near Bend, OR. We rented 2 cabins at the Metolius River Lodges - within sight and sound of the rushing river, and surrounded on all sides by Ponderosa pines. The cabins had no telephones, TV's, or cell service. We cheated and brought with us a TV/VCR and all the Christmas movies we owned! A cute general store located next to the cabins gave the kids continual access to a large array of treats and drinks. One day we went tubing at the Hoodoo ski area, about 20 minutes away from where we stayed. Daniel, Brooke and Elijah plunged down the hills on intertubes, over and over again, having the time of their lives.

The kids enjoyed the independence of having their own cabin, but most of our time was spent all together. One evening, we took a walk on a well-traveled path around the river, and it started to snow. Large snow flakes landed on our cheeks and noses. By the time our walk was finished, snow had coated the trees and the ground. It was a beautiful and awe-inspiring sight, and a gift from God to us. Falling snow brings such a magical peace, and that night we all felt it.

The trip to Metolius gave our minds and hearts a much-needed reprieve. On Dec. 30th, we drove to Vancouver. A party to celebrate Wes's parents' 50th wedding anniversary was held that day. We spent the night at Wes's parents' house. We woke up very early the morning of December 31st. Tired from lack of sleep and an anxious mind, I sat pensively in the car as Wes drove to the hospital. A Keith Green CD was playing, and the catchy, fun song "He'll Take Care of the Rest" came on - a song I'd heard hundreds of times before. But this time, the words took on a whole new meaning for me. The lyrics speak of being faced with impossible obstacles. It uses the examples of Moses and Noah and the situations God allowed in their lives that demanded a tremendous amount of hope and courage and trust. "You just keep doing your best, and pray that it's blessed, and Jesus takes care of the rest." So simple, and yet it was what I needed to hear right then. The circumstances surrounding Daniel's surgery were completely out of my control. I had tried to do my very best for Daniel and for his health - and I had prayed and prayed. And Jesus would take care of the rest. That was the truth - so simple! God had lovingly carried my son all the way to this point, and He wasn't going to stop now.

We arrived at the hospital, and Daniel was prepped for surgery. Then the surgeon, dressed in his surgical scrubs, came in to speak with us. And then we gave Daniel good-bye kisses and hugs, before making our way, once again, to another waiting area. This time, our friends and family were at home praying for us - and we felt them with us in spirit. One family we had met through Wes's parents came to the hospital and stayed with us the entire time. They were so sweet and kind and we enjoyed their company.

We received occasional updates throughout the surgery. The updates sounded generally positive - but we really wouldn't know anything until it was over. The surgery lasted about 5 hours, and then Dr. Selden came out to speak with us. The first thing I've always done is look at the surgeon's countenance to see if he seems happy or sad. He seemed happy. I breathed a sigh of relief. He sat down opposite us and told us that the surgery had gone very well. He said he had been aggressive in trying to remove as much tumor as possible - his reasons being that Daniel's spinal cord can not continue to be opened up over and over again - he wanted to make sure he took out as much of the tumor as he could while he had the chance. He said the electrical monitoring alarm went off at one point, and this prevented him from going any further. Daniel was waking up, and was moving his fingers and toes. Overall, Dr. Selden thought the surgery had been very successful. He told us to wait in ICU and they would be wheeling Daniel in soon.

Once Daniel was brought to ICU, Dr. Selden examined him again. He could clearly see now that Daniel's left arm had been affected by the surgery. During his surgery in New York, Daniel's RIGHT arm had been affected, but the function eventually returned to an almost normal state. So we had hope that the function in his left arm would also return. Although the movement in his left arm did improve greatly over the following weeks and months, still to this day, he has issues. His left arm twitches all the time, and he has trouble grasping things with his left hand. The one thing he misses the most is being able to play the piano - something he really enjoyed before the surgery. But for the most part, the slight disability has hardly hindered him at all. He lives with it like it's a just a normal part of his life.

I don't even need to say how thankful and relieved we were that Daniel came through surgery with no significant nerve loss. The Lord has continually brought him (and us) through so many trials and terrifying experiences, and for this we give Him all the glory.

Tuesday, September 28, 2010

Daniel's 2007 Tumor Surgery - Part One

Daniel finished his chemotherapy regimen in early 2005. In 2005, we started noticing that Daniel's growth had slowed down considerably. His younger brother had passed him up in height. We took Daniel to an endocrinologist, a doctor who specializes in hormone disorders. The endocrinologist performed lots of tests on Daniel, but essentially there was nothing that could be done for him. Human growth hormone therapy was not an option, because this therapy potentially promotes tumor growth. Another therapy would have blocked the absorption of estrogen, which strengthens bones. Daniel's bones, because of the steroid use, were already too brittle. We were advised to just wait and hope for the best. In 2005, Daniel's growth was on the 5% curve. Since then, it has dropped down even lower and is not even on the curve. This issue has been a difficult one for us to deal with. We remind ourselves often that God must have plans for Daniel that are different than ours. Bigger. God is preparing Daniel to be a giant on the inside. Daniel's trials have given him spiritual depth and a wisdom and maturity of someone twice his age. We are blessed daily by the amazing character we see in him.

To rewind a little, Daniel had an MRI in mid-December 2007. I've mentioned before that MRI days are never fun, at all. But this day, I felt strangely calm and peaceful. The butterflies were not there like they usually are. The MRI was followed as usual by a consultation with Daniel's oncologist at Doernbecher. We sat in a tiny examination room - Wes, Daniel, and I, for about 45 minutes waiting for the doctor to come in. Our other children had come with us, but were watching a movie in the waiting room. We got so bored, that we started singing songs in that room. I'm sure the whole floor could hear us singing. Finally, the doctor walked in with a neurosurgeon. He proceeded to examine Daniel. His examination was more probing than usual. When he was finished, he looked at the neurosurgeon and said, "Well, he LOOKS okay." He started talking to us about the MRI almost immediately after examining Daniel, but his previous comment had already tipped me off. I knew that something was amiss.

He told us that the MRI revealed tumor growth in the cervical (neck) area. He called the neurosurgeon on the phone before meeting with us, and the neurosurgeon (Dr. Nathan Selden) had decided to come over. They discussed the findings before meeting with us, and had come to a consensus that another surgery was needed to remove this growth. Wes and I took the news in stride, without reacting strongly. We'd been down this road before, and although we were very disappointed, we still had confidence that God would bring Daniel through, once again. This time, Daniel was 12 and not 7 - a big difference. A child's level of understanding is much greater at 12 years old, but Daniel remained incredibly calm.

The first thing we did when we got home was send an email to Dr. George Jallo. Dr. Jallo had assisted Dr. Kothbauer during Daniel's tumor resection surgery in New York and had an equally high level of experience and expertise. Dr. Kothbauer had made the decision a few years earlier to take his neurosurgical expertise to Europe where it was very much needed, and he moved to Switzerland. Dr. Jallo had knowledge of Dr. Selden at Doernbecher. He placed a great deal of confidence in Dr. Selden's ability to perform a successful tumor resection surgery in the spinal cord. Hospitals around the country had made great strides in this field since Daniel's last surgery in 2002 - and so he advised us to have the surgery done in Portland this time.

We followed his advice, and made the decision to go with Dr. Selden. We met with Dr. Selden and he gave us some disconcerting news - each time the spinal cord is opened up, there is an exponentially greater risk for neurological damage, because the surgeon must cut through scar tissue from previous surgeries. This surgery would be less extensive than the one in New York, but at the same time, much more risky. He told us that the chances for paralysis, even death, were higher. We left the appointment feeling desperately aware of how much we needed to release our fears for Daniel's life and well-being, and place them in God's hands. The surgery was scheduled for December 31st, 2007, New Years Eve. So we made the decision to try and have the most wonderful Christmas possible before the big day arrived.