We Believe in Miracles: The Journey Part III

Before I left the ICU the next morning, we had what would be a final visit from the neurosurgeon.  Again, he told me he was still "waiting in the wings".  Nice guy, but he was becoming like the grim reaper.  Nothing personal, doc, but I'm glad we didn't have to see you again.  Fortunately, I cleared the spinal tap with no meningitis.
After I left the ICU, the  next couple of days until I was discharged on Friday were somewhat frustrating.  We just had to wait.  Infectious disease wanted to wait for some labs to see what kind of bacteria we were dealing with, the ENT team was waiting on infectious disease, and the Opthamologist was just thrilled when he came to see me the day after surgery and saw how much better my eye looked.

Cory affectionately tagged this, "Janna's kool-aid lip".  Not the most flattering picture, but also not too bad considering I'd had two surgeries on my face in 3 days...and hadn't showered for, uh, several days.  I missed my kids and worried about how they were holding up, although I'm grateful I didn't have to worry whether or not they were being taken care of.   Grandma was being mom while Cory spent long days with me and went home to sleep.  I worried I would wear out my mom. She had planned to come help for a week with a new baby -- not be completely in charge of my family.  Her week-long visit kept getting extended as the story continued to unfold.  I am incredibly grateful for her willingness and ability to be here to help us.  I horribly missed my newborn daughter and worried she wouldn't know who I was.  Cory brought in pictures and videos of her on his phone. I was grateful she'd switched from breast to formula with such ease -- truly a tender mercy -- but wanted to be able to hold and nurse her again.  I thought I could work on getting my supply back when I returned home.

Thursday the Infectious Disease doctor told me I'd be going home with a picc line and a 6-week course of IV antibiotics. Something in my orbit lit up on the MRI, and they were erring on the side of caution as they feared a bone infection (of course, we learned later that these things showing up on the MRI -- at the base of the skull and orbit --weren't bacterial but, rather, part of the cancer). The antibiotics were such that I wouldn't be able to nurse while on them.  This may not seem like a big deal, but it was to me.  I mourned the loss of my breastfeeding relationship with Clara for a long time.  For some reason I couldn't contact Cory, so I called my dad and cried as I told him what I'd just heard.  I felt scared; scared of what was ahead and whether or not I'd ever feel normal again.  My dad reminded me to look where I'd come, not how far there was to go.

Finally, on Friday, February 8 (a week after going to the hospital), I was ready to be discharged.  I had my new accessory in my arm (the picc line), my pirate patch on my eye, my own clothes, the "kook-aid catcher" gone from under my nose, and everything in place for a home nurse to come show us how to administer the antibiotics and care for the picc line. Unfortunately, I walked in the door at home with another pounding headache.  I held Clara, said hi to my kids, forced down a bite of two of dinner, and went to my bed. I was surprised by how weak my legs felt climbing the stairs to our bedroom.  These were the same legs that carried my pregnant self up and down those stairs several times a day with ease just weeks before.  I couldn't believe how weak I felt.  And, for whatever reason -- anxiety, physical exhaustion, who knows -- I felt miserable.  Cory called a friend to administer another priesthood blessing.  They blessed me to sleep that night, which I did.  The anxiety-ridden hospital nights carried over into nights at home that night and for a while, but I was still grateful to be in my home, in my bed, with my family.

We Believe in Miracles: The Journey Part II

I arrived at GWU Hospital about 10:30 pm.  I was hungry and, since over the last couple of days I had been "NPO" (non per os; nothing by mouth) several times, I figured I might be again for a possible surgery the next day. I asked for a snack...which turned out to be the last solid food I'd have for about 36 hours! I flipped on the TV to take my mind off of the fact that I had no idea what was in store and came across and old "The Office" episode.  Perfect!  It had me laughing out loud.

No time was wasted.  Someone from the ENT team came to see me.  Then the opthamologist paid me a visit.  He had to pry open my eye and examine it.  I hadn't looked out of that eye for almost a week, so I was glad to find that I could still see out of it when he held it open!  And another tender mercy...I wear contacts.  I put them in every morning and take them out every night.  For some reason, the Wednesday my eye started swelling, I didn't put my contacts in that day.  I know it was more than just for "some reason"...just another detail the Lord took care of. At about 1:30 am, I was taken for an MRI. I had been told before I was transferred that this would be necessary, and I was trying not to panic.  I am claustrophobic and couldn't imagine being shoved in a tiny tube for 45 minutes to an hour.  I laid down on the table and about lost it when the first thing the tech did was close a cage over my head before shoving me in the tube.  No one had warned me about that!  I found myself tapping into the same abdominal breathing and relaxation techniques I've used through 4 labors.  There were some moments of panic as I lay there, closing my eyes, focusing on breathing, and saying constant prayers in my head.  Here I was having been through one surgery, probably facing another, and I was worked up about this ridiculous MRI.  Once again, the Lord helped me get through that experience.  When the tech came in over the speaker and said, "We're all done", I was so relieved!  In fact, those have been my favorite words over the last few months as various procedures come to an end! I went back to my room to try to sleep before the unknown of the later morning arrived.  "Try" to sleep being the operative word.  Let's be honest; no one can sleep well in the hospital. Nighttime was always anxiety-inducing.  Once I got home, I still found myself having residual anxiety every night.

I woke up around 6:30 am and called Cory in somewhat of a panic.  He was planning on helping my mom get the kids off to school and getting to me around 10 or so, but I asked him to please come as soon as he could. Add that to the tender mercy list...Cory got there a little before 9, just as the nurse came in to tell me I was headed to surgery.  Cory administered a priesthood blessing, and we found ourselves headed to pre-op for the second time in 3 days.  As I waited in pre-op I met with the anesthesiologist, the ENT (Dr. Sadeghi), and the Ocuplastic Surgeon (Dr. Mansour).  They explained they'd be tag-teaming this surgery.  While the first sinus surgery had cleared out the polyps from my right sinuses, ears, and nose, he'd had to stop before he could do much on the left because of bleeding.  So, Dr. Sadeghi would get in there again to see what needed to be done, and Dr. Mansour would see if he could drain the orbital abscess through the nose.  If not, he explained he'd have to make an incision on my eyelid.  We also found ourselves meeting with a Neurosurgeon...what?!  He explained that, because the procedure with my eye was so close to my brain, they'd be there if needed.  I think it was at this point we started to realize how serious this was.  I was getting nervous about being put under again and just kept holding Cory's hand.

I woke up in the ICU with an oxygen mask on (I hate those things; they make me feel claustrophobic) and hooked up to all sorts of leads. They were calling my name to rouse me, and I was in and out for a bit.  I asked where my husband was.  They called Cory to come in and I took his hand. He had to leave again for some reason, but I was still in and out.  He came back, and they explained that they would have to do a lumbar puncture (spinal tap).  Due to the location of the abscess (so close to my brain) and something that "lit  up" on the MRI, they feared meningitis.  So, a few hours after coming out of surgery, I was being prepped for a spinal tap.  Cory had to leave for that.  I remember being curled up in the fetal position and several people coming in to help me with the procedure.  One man, whose face I never saw and whose name I don't remember, said he was there to help me and asked if I'd like to hold his hand.  I did.  Seriously, he was like an angel.  I squeezed his hand and he and the doctor talked me through everything as it was being done. Towards the end I started to feel more pain and began to panic, so my "angel" put a little something in my IV.  That made me really loopy and slowed  my heart down, so back on with the oxygen mask (still hate that thing).  My nurse Justin was incredible.  He was so compassionate and kind.  I spent that night in the ICU.

Clara's Blessing and Easter

On Saturday March 30, we were able to bless Clara. In the Church of Jesus Christ of Latter-day Saints, this is an opportunity to bring a new baby before the Lord and, with the proper priesthood authority, give her a name and father's blessing.  We chose to celebrate this special event at home with my parents, Scott and Brooke and their family, and our  Bishop. It was an intimate, special experience to share.

Clara wore a dress that was first worn by my little sister 25 years ago, and she became the 4th granddaughter to wear it.

Of course, as it was Easter weekend,we also celebrated with the traditional coloring of eggs and Easter baskets!

Heading down to see Easter baksets

Clara was so happy to have her first Easter!

Clara's Easter dress

We were grateful to celebrate the Atonement and Resurrection of our Savior!  I was grateful to attend church (for Sacrament Meeting) for only the 2nd time since Clara's birth to enjoy the Easter program, including watching my children sing with the primary.  

We Believe in Miracles: The Journey Part I

I want to start this post off with this picture of Cory and I at Ford's Theater...because I like it.
We saw "A Christmas Carol" with my parents and Scott and Brooke.  A lovely, lovely time.

We want to detail the journey to my leukemia diagnosis as our testimony of the Lord's hand in our lives.  We recognize the many tender mercies that were shown.

For months before Clara was born, I'd had "sinus problems".  By November, I'd completely lost my sense of taste and smell.  And forget about breathing through my nose.  By December, the hearing in my left ear was impaired.  I paid a visit to the ENT (Dr. Khanna -- click on the link and tell me he doesn't resemble Steve Carrell) to see if there was anything that could be done while I was pregnant.  He gave me an antibiotic.  When that didn't work, he offered a steroid to help with the inflammation.  I declined and decided I'd just wait for this baby to be born to really attack it.
By the time Clara was born, the right side of my nose was really swollen and the hearing in my right ear was also impaired.  I figured it was just a raging, untreated infection (we found out later, of course, this was the tumor).  The rest of the story is best told as a series of tender mercies.
I paid another visit to Dr. Khanna four days after Clara was born.  We recognize this as a blessing because it put me under the watchful eye of a doctor.  Normally, I wouldn't be in such a hurry to rush off to doctors so soon after giving birth.  But, between the swollen nose, loss of taste and smell, and the hearing going, I wanted some relief.  I was nursing Clara, so I knew I was still somewhat limited in what could be done, but had more options than when pregnant.  Dr. Khanna prescribed a steroid and sent me for a CT scan of my sinuses. Two days later, I started having earaches.  I was miserable.  I returned for a follow-up visit where Dr. Khanna reviewed my CT scans (my sinuses, particularly the right side, were a mess of polyps and other junk) and attempted to do a myringotomy.  This is a procedure to drain fluid from the ear.  My hearing was very impaired at this point.  I couldn't hear my kids unless they spoke right in my ear and Cory had to yell at me.  He wasn't able to drain any fluid because my ears were so inflamed and one side had a polyp.  I was really disappointed because I'd been hoping for some relief from the earache and hearing loss.  He sent me home with a different steroid.  The next day, my right eye started to swell.  I called him that evening to ask if it could be a reaction to the steroid but he didn't think so.  The next morning, I looked like this:

And I felt miserable.  I can't really describe what felt miserable; it wasn't like my throat hurt or my stomach was upset.  I had a pounding headache that lasted until the first surgery.  It was all I could do to sit myself up to nurse Clara.
The morning my eye swelled shut was the morning my mom came into town.  We recognize this as a huge blessing.  We picked the date (January 31, Clara's due date) in November for her to come help with the baby.  Since I'd had 3 early babies, we'd hoped the baby would be here by that time.  Sure enough, she was!
Cory took a picture and went into Dr. Khanna's office to show him.  He had Cory make an appointment to bring me in the following day (Friday February 1).  I continued to feel horrible the rest of Thursday.  I told my mom and Cory I thought I was dehydrated.  I was trying to drink and eat to have enough to make milk for Clara, but I did not have an appetite at all.  That night, Cory called the Bishop -- the ecclesiastical leader for our church congregation -- to help him administer a priesthood blessing.  I just lay in bed as they placed their hands on my head to administer a blessing from my Heavenly Father.  Even though they were standing right over me, I couldn't hear a word of what was said, but I could feel the power of faith.  My mom and Cory told me the words that were said.  Among many other things, I was admonished to be patient.  More immediately, I was blessed to be able to sleep that night...which I did.

We went to Dr. Khanna's office -- me semi-comatose -- the next day. He tried again to relieve some pressure from my ears, and then told Cory he needed to get me to the hospital and we'd do surgery the next day.  We went home to get some personal things and I nursed my baby for what would be the last time.  It's hard to explain how difficult it was to leave  my kids, and especially my not quite two-week old baby, for the unknown.  I didn't know what was wrong with me, I didn't know when I would be back.  The Lord's tender mercy in having my mom here was no small thing.  While I did not want to leave her, there is no one else I could imagine taking care of her if it couldn't be me or Cory.  As those days turned into a week in the hospital, I missed her and worried that she wouldn't know who I was.  I worried that I wouldn't be able to nurse her again.  But, I never worried that she wasn't being completely taken care of and loved. My mom took on the role of mom again as she took care of my 4 kids so Cory could be with me during the day at the hospital.  I cannot adequately express to her or my Heavenly Father my gratitude for that. And, as I've worried about my kids through this whole process, the spirit has whispered to me that they were His before they were mine and He would take care of them.  The Lord is ever  mindful of and taking care of our family.

Cory took me to the ER and, once I was in a room, he went back home late that night and returned in the morning.  I vividly remember being in pre-op the next day, not being able to hear anyone as they'd come talk to me (nurses, anesthesiologists, etc.) and looking to Cory to interpret.  He'd either tell me in a voice I could hear, or type it on his phone.  I felt so horrible and it was taking so long...I asked Cory to stroke my arm to help me relax.  This was the man who helped me relax through 4 labors, and he did it again.  I was in much more need of mental and physical relaxation at this point, and having him there holding my hand and stroking my arm allowed me to finally fall asleep. It was a deep enough sleep that I was startled awake when the nurse came in to wheel me to the OR.  I think I will always remember and treasure that simple yet powerful experience.  Cory was my rock that whole week in the hospital (and always).  Dare I say it was one of the most romantic times in our marriage.  Romance is not what is depicted in movies.  It's fun to watch and makes us feel good, but having my husband right at my side, administering priesthood blessings and holding my hand as we faced one of the most scary things of our lives, was beyond romantic.

After surgery (Saturday morning), Dr. Khanna told us I'd probably go home Monday. Great!  My eye, though still swollen shut, wasn't as red and swollen.  Sunday morning we had a visit from the infectious disease doctor (What?  Why were we getting a visit from her?), who wasn't so sure I'd be leaving so soon.  She was concerned about the eye.  Another CT scan was ordered, and they found there was an abscess behind the eye.  And so began the search for a hospital with an ocuplastic surgeon.  By Monday evening it was decided I'd be transferred to George Washington University Hospital in DC.  About 9:30 that night, Cory left me for my ambulance ride to DC while he went back home.

The swollen eye was absolutely a tender mercy that saved my life.  And, the location of the abscess was a blessing.  If my eye hadn't swollen, there would not have been a rush for the first surgery.  Had we not done the first surgery, there wouldn't have been pathology to send out to find the cancer.  Had the abscess been slightly in a different direction, we wouldn't have known about it until I went blind, or it affected my brain.  We know the Lord was taking care of the details.

Blog for Janna's Leukemia Recovery

There is a new blog detailing Janna's recovery from Leukemia.  It's www.thisiswhatwefightfor.blogspot.com. We will still continue to post some updates and general Martin family news on this blog and thisiswhatwefightfor.blogspot.com will be updated by friends and family with news on Janna's progress.  

By Way of Update...

I am so grateful to be typing this update from my bedroom!  I can't imagine still being in the hospital.  My oncologist, Dr. El-Shami, has been very aware of and sensitive to the fact that I have young kids at home.  I know that is why he allowed me to come home early.  Of course, I'm under strict orders to return immediately to the ER at any sign of a fever or sickness.  And, I'm returning to his outpatient clinic twice a week to check my CBC.  I returned Friday for my first follow-up and, as expected, my numbers are declining.  My white blood cell count was really low and my red blood cells and platelets continue to drop.  I will go back again on Tuesday.  If I get too low, they'll send me over to GW hospital (which is just across the street from his clinic) for a few hours for a blood transfusion.

In the meantime, we have to be very careful about germs.  Because they pumped so much chemo into me over such a short period of time (I was on chemo for about 6 hours a day for 5 days), my immune system is "out to lunch", as Dr. El-Shami puts it.  There has been a lot of hand-washing at our house and I'm semi-quarantined to the bedroom, particularly as my numbers continue to drop.  I'm also on what's called a neutropenic (all these fun vocabulary words we're learning!) diet, meaning no fresh fruits or vegetables, due to the bacteria they might carry.  No flowers in the house, either.  My cousins sent me some fabric flowers and a friend drew a beautiful bouquet for me. :)

Today I feel much more weak than I have, due of course to my declining red blood cell count.  I'm grateful for good anti-nausea medication.  They pumped it into my IV for half an hour before each chemo treatment and sent me home with an oral pill. My appetite waxes and wanes, but is overall much better than it was in the hospital.  Who would have an appetite on hospital food, chemo or not?!  Blech.

Here's one meal from the hospital.  That green thing was broccoli in a former life.  The red liquid was supposed to be tomato soup...I think they just gave me a can of tomato paste.  *shudder*
Food, among many, many other things, is much better at home.

We Believe in Miracles: Clara's Birth

As we reflect on the whirlwind that has been for the past month and a half, we have been able to see our Heavenly Father and Savior's hands every step of the way.  The first blessing was the healthy, safe birth of Miss Clara Elizabeth. 

My 3 previous babies had all come within a few days of hitting week 38.  So, while I knew babies come when they will and I couldn't count on this one coming early, I thought I had a pretty good track record.  Saturday January 19, at 38 weeks and 2 days, I had my first signs of early labor.  I had gone to an ill-fated lunch with my sister in law Brooke.  Long story short, we had to end up settling for a quick 15-minute sandwich at a no-name yucky place.  Don't get me wrong, no-name places can turn out to be diamonds in the rough...not this one. Brooke and I still want a do-over on that outing.  We headed back to their place, where Scott was watching my kids, and got ready to go back in our direction for Gabriel and Lincoln's basketball game.  I noticed a little bit of bloody show, which is how my labor with McKay had started.  I figured I had the rest of the day of early labor stuff, and then things would kick in that night and we'd have a baby.  Since McKay's was so fast, I was pretty cocky this time around.  I got a bit of adrenaline and was nervous to drive myself, so Scott drove his car with their kids and Brooke drove my car with me (Coach Cory was waiting at the basketball game).  Half of the kids went to the basketball game and the other half came to our house with Brooke and me.  I took a shower while Brooke watched the kids.  I was having irregular, mild contractions.  Nothing big.  The Rasmussen's stayed for dinner that night, and then they decided to take our kids to their house for the night...because, remember, this baby was supposed to come fast once active labor kicked in?!

I woke up the next morning...no baby.  Weird.  So, I guess it wasn't going to be just like McKay's, but we still figured it would go fast when it kicked in.  Scott and Brooke still had our kids (such a blessing), so we spent Sunday taking walks, playing games, watching "The District" on BYU TV, sitting on the birth ball...all the while thinking this labor would kick in at any moment! Looking back, I'm really grateful for that quiet day Cory and I spent together.  Very grateful.  I kept having contractions, some that made me stop, but nothing regular.  We decided to get our kids back since baby was not in a hurry.  

I woke up about 2:00 Monday morning (January 21) with contractions.  They kept me awake and weren't going away, so after about an hour I woke up Cory.  He started making phone calls -- the midwife and birth assistant, and our friend Danelle to come be with the kids (I'd warned her I always end up going into active labor in the middle of the night).  The midwife on call lived in Maryland, about 30-40 minutes from the Birth Center; we live about 10 minutes from it.  I panicked that we'd get there before her -- because, remember?  This baby was going to come fast now that I was in active labor.  She called the back up midwife, who lived nearby, to meet us there until she got there.  Danelle came over in record time and we took off about 3:30am for the birth center.  Kelly, the nearby midwife, and our birth assistant Aimee met us at the birth center.  I was still fairly pleasant between contractions, so I was just anticipating a change in direction any minute.  Jennifer, the main midwife on call, got there right away.  I was still having contractions, but they were very erratic.  And, my water hadn't broken yet.  I figured once that happened, things would move fast.  Per our wishes, Jennifer and Aimee gave us our space to labor together.  I rely on Cory to help me through labor.  They'd come in every 15 minutes to check the baby's heart tones, but other than that gave us our space. As the morning went on, Cory and I were baffled that things weren't happening as fast as we thought.  My contractions weren't getting longer, stronger, and closer together.  In fact, as the sun started to come up, I remember thinking, "Where is this baby?!"I hadn't had an exam yet and, finally, around 9:30 am  (I think), the midwife offered to do one.  I was hesitant because I didn't want to be disappointed, but agreed to it as long as she didn't tell me any numbers.  After checking, she told me I was definitely in active labor (Cory and I were honestly thinking of going back home), but that the baby's chin wasn't tucked, which meant its little head wasn't putting as direct pressure on my cervix as it would otherwise.  Honestly, at this point, my pride was a little hurt.  I'd had 3 babies and I teach childbirth classes...shouldn't I know when I'm in labor?!  Once again, reflecting back, I think the Lord was teaching me patience, which would be a recurring theme over the next weeks and months.  

In order to help the baby turn in a more favorable position, they had me kneel on the bed with my rear in the air and my chest on the bed.  This could allow the baby to shift back, then re-settle into a chin-tucked position. ( Oh, and by the way, I found out later I was 5 cm dilated and 70% effaced at this point.) I stayed in that position for a good 30 minutes.  We decided to go for a walk outside and get a little something to eat. We walked across the street to get a breakfast burrito at Subway, and I started having contractions about every 2-3 minutes. Getting some food and fresh air was great.  It would have been more pleasant to keep walking outside for a bit, but it was hard to relax through contractions when I was shivering from cold.  For the next several hours, Cory and I worked together as contractions continued about 2-3 minutes apart.  He was my rock; I completely relied on him as he helped me through my labor, one contraction at a time.  I took a shower, sat on the birth ball, walked up and down stairs two at a time sideways...all hoping to help this baby get in the best position.  About 1:00 pm the contractions started to feel different and were double peaking or coming right on top of one another.  I lay on the queen size bed and Cory laid next to me as we worked to finally meet our new baby.  With my first push, my water broke and splashed the midwife.  They helped me to hold back a little bit so as to avoid tearing, and within another push or two Clara was here!

They laid her on my chest and covered us both with a blanket.Labor is amazing.  There is nothing like the feeling of pain and intensity that comes just before you welcome a baby into the world, because as soon as that little one is laid on you, all that happened before is forgotten.  Cory and I kissed and welcomed our new little one to the world.  It was a minute or two before we lifted the blanket to reveal the gender...and Cory and I both just stared.  Both of us fully expected a boy and we honestly didn't know what we were looking at!  Neither of us said anything until the Birth Assistant, Aimee, finally clued in these clueless parents: "It's a girl!"  We laughed and immediately started calling her Clara.

About 3 hours later, we brought Clara home.  We took a nap before Brooke bought the boys home to meet her.  She had taken them to pick out some gifts, and they were so excited to present her with a fuzzy pink blanket, a set of monkey hat and slippers, and some hair bows.  From the moment they met her, these boys fell in love with their little sister.  

We were now a family of 6!

We are so grateful for this first miracle in our journey.  We are thankful I was able to carry Clara full-term and that she was born healthy and without complications. A few weeks before she was born, I told Cory that I felt like this baby would bring a spirit into our home that we needed. I had no idea just how much that would be needed!  I am grateful I was diligent about eating healthy and exercising throughout my pregnancy. I know Heavenly Father was helping me prepare to not only have a healthy birth and baby, but also to endure what was to come.