November 24, 2006 - Turf Wars and Turkey Dinners

Sheesh, a girl gets a blog and suddenly she gets all reflective and philosophical! I'll try not to let that happen too often. Let's just blame that last posting on the holidays.

Anyhoo, we're almost done with round 2 (which is to say that Lillian is almost done with round 2). We knew this was going to be a different visit from the time we got to the room, lucky number thirteen. Jeff was running out to the car to bring in our things and I stepped over to the pantry to grab some milk for Lillian. When I returned, I found her trying to climb out of her bed! A far cry from the listless little girl of 8 days prior. And she has figured out how to push the buttons to move the bed up and down. But hey, whatever makes her giggle!

Her first appointment on Wednesday was for a hearing test. (One of the potential side effects of this particular chemo drug is a loss of hearing so she takes a hearing test before each round.) I told my mom that it would be no big deal since it's primarily just playing with toys. Famous last words! She screamed through the whole thing. Finally the audiologists suggested that we call them once she had fallen asleep for her nap and they would come to a quick test while she slept. So we headed up to the clinic to check in for our next appointment and 5 minutes later she was asleep in her stroller. Back to the hearing room we went and the test was over 2 minutes later with Lillian sleeping through the whole thing. (Her hearing is good by the way.)

She again is tolerating the chemo very well. Praise God! She's playing and watching videos and we're going for lots of walks. Somehow we managed to get in the middle of a turf war between oncology and neurosurgery over her shunt sutures. All we needed was for neurosurgery to look at the sutures to tell us whether they needed to be removed. Apparently neurosurgery preferred to answer that question over the phone. As we have discovered, the communication between departments is a bit rough and a times even tenuous. For my Nike friends, it often reminds me of work and particularly of the SMU process. Well let's suffice it to say that hopefully Lillian won't need the services of this particular neurosurgery resident anytime soon. And I've gained a valuable lesson to apply to my job.

Thanksgiving was pretty low key which was fine with us. They served a wonderful meal on Wednesday night and the hospital administration supplied pies on Thursday. A far cry from the china platted feast we traditionally enjoy at home but a worthy meal nonetheless.

We're looking forward to completing her final chemo drugs today and going home late tomorrow afternoon. Though now familiar, the "ched," as I've termed the chair that converts to a bed, is just not the same as our comfy king bed at home. Hope you all are recovering from yesterday's festivities and are enjoying the sale-extravaganzas today!

November 21, 2006 - Preparing for Round 2

It's hard to believe that it's been a month and a half since Lillian's diagnosis. As we prepare to return to the hospital for her second round of chemotherapy, we are hopeful that this stay will be smoother than the last. (Frankly, how could it not be?) Regardless, we have learned to take each day, each moment as it comes. We rejoice in the small victories such as completing the antibiotics. We celebrate each milestone toward recovery such as watching her crawl again. And we count each blessing such as precious time spent together as a family. So with a week of much needed time at home under our belts, we return to Doernbecher's renewed and as ready for round 2.

Prayer requests:

• Please pray that Lillian would be comfortable and content during this process.


• Please pray for wisdom for the doctors, nurses and for us so that we might identify and alleviate any side effects quickly.

As I write this, I am reminded of the lyrics from one of my favorite songs, "Life Means So Much" by Chris Rice. I thought I would leave you with the chorus:

Teach us to count the days
Teach us to make the days count
Lead us in better ways
That somehow our souls forgot
Life means so much

Every day is a gift you've been given
Make the most of the time every minute you're living

November 15, 2006 - Home Sweet Home

Nov 15 - After 16 days in the hospital, we are finally home. We have to give her intravenous antibiotics every 8 hours but that's a small price to pay to sleep in your own bed.

Nov 20 - We are done with the antibiotics! I have cleared the coffee table of all medical supplies (which I'm sure startled the neighbor and pizza guy). We have one day free of iv's before returning to the hospital and believe me, we're going to enjoy it.

November 3, 2006 - Complications

• Nov 3 - We are supposed to go home today but Lillian has started running a fever. They draw blood cultures and send us home anyway. Two hours after arriving at home, the hospital called to say we would need to return as Lillian's cultures were positive for a bacterial infection. As we entered a new room in 10N, Lillian started yelling "no, no, no" as though she knew what was in store. They immediately started her on intravenous antibiotics.
• Nov 4 - Surgeons look at her Hickman and confirm that it is likely the source of the infection as it continues to ooze. They want to remove it but can't schedule it until the following morning. Lillian's fever was 103 and she was miserable.
• Nov 5 - The Hickman was removed and the surgeon put an iv in her foot for blood draws and to administer the antibiotics. (This was only after poking her several times in both arms.) Par for the course, the nurses were unable to draw blood from the iv but could still administer the antibiotics. They brought in a phlebotomist to draw blood. What a rude awakening at 5am.
• Nov 6 - Another rude awakening but this time the phlebotomist wasn't able to draw blood. A second phlebotomist tried again unsuccessfully. They decide to place a PICC line in her arm as the iv in her foot was starting to fail. PICC lines can last weeks if needed vs. peripheral iv's which only last a few days. We needed the infection to clear before putting in a new Hickman and they had no placement options left for peripheral iv's.
• Nov 7 - Apparently the entire PICC line team was at a conference. Fortunately they found someone at home who was willing to come in. But the sedation team is booked solid. Since Lillian is lethargic due to the fever and generally a model patient, we decide to try the PICC line placement with just pain medicine. Lillian was amazing but the PICC line team could not get the veins to cooperate. Lillian's arms and feet look like pincushions.
• Nov 8 - Another attempt at the PICC line, this time under sedation. Success! Lillian continued to be lethargic and won't focus on anyone or anything. Her white blood cell counts are zero which is expected after chemo.
• Nov 9 - The neurosurgeons are brought in to examine Lillian and request a CT scan. As we moved Lillian from her bed to the transport, she vomited. We did a quick clean up and I held her in the bed as we ran to the CT scan. The similarities to her tumor symptoms are unnerving. The scan reading showed significant hydrocephalus. Though we thought we were out of the woods, apparently it can build over the course of a month. Lillian will need a shunt.
• Nov 10 - The shunt was placed successfully though Lillian's heart rate is low and blood pressure was high afterward. This is the opposite of what they expect to happen.
• Nov 11 - Since her vitals are still wacky, she has another quick MRI which confirmed that the shunt was working correctly. Her fever subsided, her white cell counts are coming back up and her blood cultures are negative.
• Nov 13 - Yet another surgery to place the new Hickman. The surgeon cuts the bandage in the shape of a heart. As the oncologist said, what surgeon takes the time to cut a bandage in the shape of a heart? But this is indicative of the care we have received throughout this ordeal.
• Nov 14 - With her white cells peaking, it was time to collect stem cells. These will be replaced as the chemo destroys the bone marrow. The hematologist warns us that it will likely take three consecutive attempts to harvest enough cells. Typically they get 5 per draw and they needed 15. But our little miracle delivered 21 in the first harvest.
  
  If you're still with us after all of that, I'll spare you any additional verbosity. Instead, I'll leave you with my life verse which seems incredibly appropriate:
  
  Isaiah 41:10 - So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.

October 30, 2006 - Chemo Round 1

• Oct 30 - This was a packed day. First Lillian was injected with a radioactive isotope and an iv was placed in her foot. Then she had a hearing test. Then we went to the clinic and waited for the blood draws that were planned every half hour for an hour and a half. The first blood draw was a mess. They couldn't the iv to draw and couldn't find another vein despite numerous pokes. They brought in another person from iv therapy who was also unsuccessful. The discussion was either to scrap it and start again in a few days or keep trying with a new blood-drawing-expert. Since scrapping it also meant delaying the start of her chemotherapy, we opted for vampire #3. Praise God for Patti (aka vampire #3). She easily got all three blood draws. Next Lillian went into surgery and got her double lumen Hickman central venous catheter placed and a lumbar puncture to check that her spinal fluid was clear of any cancer. Following surgery, we were checked into 10 North, the hematology/oncology unit, for the start of chemotherapy.


• Oct 31 - Happy Halloween! Chemotherapy went beautifully with no side effects. The Child Life team coordinated trick-or-treating on the 10th floor so Dr. Lillian joined the parade. Albertsons treated the kids to pizza and handed out even more Halloween goodies. Lillian probably had a better Halloween in the hospital than she would have had at home!


• Nov 2 - The last day of chemotherapy and all seemed to still be going smoothly. Lillian played and ate and went about her day despite the monstrous pole of iv's that followed her. Jeff and I learned to flush the Hickman, change the caps and change the dressing. As we perform a dress rehearsal with our nurses support, I noticed some drainage from the incision and not the good kind. She thought it looked ok.

October 13, 2006 - Rehabilitation

• Oct 13 - Friday the 13th and we took our first ambulance ride to Emmanuel. Lillian is to have 4 hours of physical, occupational and speech therapy daily in this inpatient rehabilitation program.


• Oct 16 - Happy 2nd Birthday Lillian!!! Nana, Papa, Grandpa Ken and Auntie M joined us for a small birthday celebration in the hospital atrium.


• Oct 17 - Though we had planned to stay in the inpatient program for 2 weeks, we arranged to change to outpatient day therapy. This enabled us to sleep, eat and play at home while commuting to Emmanuel daily for 3 hours of therapy.


• Oct 23 - Lillian was a new person after a weekend at home. We played, we took walks outside, we slept. The therapists were amazed at her progress.


• Oct 24 - We noticed a drop of fluid leading from the evd incision and immediately drive to Doernbecher's so the neurosurgeons can check it out. They sent her for a quick MRI (no sedation) and informed us that it was clear of signs of hydrocephalus. Phew.

October 7, 2006 - Resection & Initial Treatment

• Oct 7 - We were immediately admitted to the Pediatric Intensive Care Unit (PICU) at Doernbecher's and Lillian has an external ventricular drain (evd) put in to stop the build up of spinal fluid in her brain. We are amazed that she immediately feels better despite having a tube coming out of her skull. She is however hungry and forced to wait as they want another MRI, this time of her spinal cord, and again need to anesthetize her. Her spinal cord is clear of any signs of cancer. After being deprived of food for nearly 24 hours, all prior sensible dietary guidelines flew out the window as we indulged her in a dinner of pudding, jello and graham crackers. (This is just the first of many former rules that will be broken in the coming weeks.)
• Oct 8 - Lillian is taken to surgery at 8am. As the surgery is planned to take 5-6 hours, we take the opportunity to run home and pack some essentials. Needless to say, we hadn't planned on a hospital stay. We returned to the hospital quickly and a few hours later the doctors informed us that they removed nearly 100% of the tumor.
• Oct 12 - The evd is removed and we are warned to look for signs of hydrocephalus, a condition where the body no longer processes spinal fluid normally requiring a shunt to facilitate the process. We move out of the PICU onto the 9th floor. This nirvana has playrooms and courtyards and they only take vitals every four hours instead of every hour.

September 6, 2006 - Diagnosis

For those new to our journey, I am recapping the events to date:

• Sept 6 - We started noticing Lillian's balance was off. She would stumble and say "whoa" after standing up.


• Sept 18 - Lillian started throwing up each morning and her balance was slowly deteriorating.


• Sept 28 - Lillian's pediatrician diagnosed her condition as acid reflux and prescribed pepcid (which she HATED and didn't help because, well, antacids don't work on tumors. Hindsight...)


• Oct 3 - We took Lillian back to the pediatrician. Her balance deteriorated to the point where she could no longer stand without help. This time, we wrote down the history of symptoms and handed them to the nurse. The doctor walked in a few minutes later saying he hadn't understood the balance issue and we need to get a MRI to check out her brain.


• Oct 7 - We checked in for the MRI at OHSU at 8am. Lillian vomited every time we stood up or sat down making for a messy journey throughout the hospital. We were unnerved to see our little girl looking so lifeless after receiving the anesthetic. Expecting a one hour wait, we anxiously sat in the tiny (5x10) waiting room. About 15-minutes into the procedure, our world was forever changed as the doctor told us that they have found a tumor in Lillian's brain. (I am still shocked that they gave us this news in front of the room full of waiting patients and family. Still I am grateful that they didn't make us wait the full hour.) Pathology later confirmed that the tumor was a medulablastoma.