Lillian Harris

Walking With Angels

2008-04-18T09:57:00.001-07:00

The Next Chapter

2007-04-18T17:52:00.000-07:00

Many have asked me to continue the blog at least for a little while. Rather than adding to Lillian's blog, I've started a new blog fittingly called "The Next Chapter". The link is http://www.lori-thenextchapter.blogspot.com/. Time will tell whether I can come up with enough to say to justify a blog. For now, you will all get the opportunity to be my therapists as I stumble through the start of the next chapter of my life.

Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Memorial Service

2007-04-05T15:08:00.000-07:00

The service celebrating Lillian's life

will be held at:

Finley-Sunset Hills Mortuary

Saturday, April 7th at 3pm

6801 SW Sunset Highway

Portland, OR 97225

All are welcome.

Our Angel

2007-04-05T08:56:00.000-07:00

Last night, Lillian peacefully ended her battle with cancer and joined Jesus in heaven. We miss her terribly, every corner of our house screams out her name. But we are comforted in the knowledge that she is restored to full health in heaven. I picture her with long hair and clear brown eyes running and laughing. Perhaps our Easter miracle is that her pain is over and she can be a happy little kid again.

I am sorry that I cannot call each of you personally to give the news and thank you for your endless encouragement. We are in the process of making service arrangements and I'll post again once those are settled.

In lieu of flowers, we are asking those who would like to contribute to donate to the pediatric oncology account of the Doernbecher Foundation in care of Lillian. Visit http://www.ohsudoernbecher.com/support/gift.asp for details on how to donate. We have met so many wonderful children battling cancer. I can think of no better tribute to Lillian than to provide for these other amazing kids.

God bless you all.

Week of Miracles

2007-04-04T13:37:00.000-07:00

Lillian's oncologist dropped by on Monday and said something that has really stuck with me. The pastor at her church told the congregation on Sunday that this is a week of miracles. He asked them to pick 2 or 3 miracles and pray that they would happen this week. She picked Lillian as her #1, 2 and 3 miracle.

We often don't "pray big" and ask for miracles because we're scared to hope or are worried about being disappointed. After all, we don't know what God's plan is. But if this is the week of miracles, I am acting in faith and praying big.

Lillian spiked a fever last night and it's currently not responding to Tylenol. (Yep, even in Intensive Care, Tylenol is the best for a fever.) Her lungs are very sick and her liver is sluggish as well. The doctors have been stumped by Lillian's strange, prolonged illness for weeks. I pray that Lillian would have a miraculous recovery. That her lungs would have no long term damage, that her fever would disappear as suddenly as it appeared and that she would be like a new kid. I pray that this recovery would be so sudden that there would be no other explanation than God's mighty intervention!

I don't know what God's plan is for Lillian. But I'm praying big that He would deliver an Easter miracle for us. Join us in this mighty prayer, won't you?

30 Days

2007-04-01T17:44:00.000-07:00

As I read my last post, I was amazed that what was just a week seemed like an eternity ago. By the time I returned to our room after writing the update, the "conventional mode" of ventilation was already failing. That night was one of our worst with the Doctor trying several vent modes as well as switching her on, and later off, of the more aggressive ventilator machine called an oscillator.

The next day we had a care conference with the doctors from oncology and the PICU to discuss the plan. After nearly two hours, we landed on a plan with the least amount of intervention so that her body would have adequate time to respond and heal. A week of sticking to the plan (a record in the medical world) and she is generally unchanged.

After 30 days in the hospital, we are considering setting up utilities and forwarding our mail. The nurses are truly wonderful and make the ups and downs more bearable. We even played a little medical April Fools joke on one of our favorite nurses, Becca, today on her day off. With her help we have also named all of the ventilators after Friends characters. Just something to pass the time and add a little fun. We had "Chandler" but when his circuit started to fail, we decided that he once again needed some time in rehab and recruited "Rachel" to replace him. Rachel's tough, I think with enough time she just may be the one.

I pray that better days are just around the corner. They're managing the daily ups and downs but generally we're all waiting for Lillian to make the final push toward health. Until then, we hold our breath and wait.

Cautiously Optimistic

2007-03-26T20:11:00.000-07:00

Lillian is a very sick little girl. Though the weekend was grim, today was a better day. She is mobilizing fluids and can open her eyes once again. On Saturday they were talking about switching her to a more aggressive ventilator but today, just 2 short days later, they've weaned her to a "conventional mode" of ventilation on the same machine. (That's a good thing.) It's hard to allow ourselves to hope again but we have decided to be cautiously optimistic. Since they still don't know what they are treating, there's a fair chance that she could turn the other way again. Apparently this is a fairly common roller coaster for kids in the PICU. For now, we're just so thankful for every precious moment. Please pray that Lillian would continue this positive momentum.

One Step Forward, Two Steps Back

2007-03-23T17:27:00.000-07:00

This roller coaster we're on is far from over. Just as Lillian had defeated the evil infection and mobilized the stubborn fluids, they appear to have returned. Perhaps they had only retreated and not fully surrendered, I don't know. These must be Osama-germs or something.

They suspect she may have another infection but have yet to find any positive cultures. She has ballooned up again and though she's not yet at her highest previous weight, she's making fast headway. Every time they come up with a new test to run, I actually find myself hoping they will discover something. Something obscure but easily treatable of course.

Among the many tests are a daily chest x-ray. I was just reading Parents' magazine where a mom wrote in asking if dental x-rays were safe for her 4-year old. Boy, what I wouldn't give to have just one x-ray a year to worry about. I keep telling the docs that they've radiated her so much with the x-rays that she won't need radiation therapy after this.

Despite the best thinking of about a dozen of the country's finest doctors (between the PICU, Oncology and specialists), we have yet to find a reason for her backslide. Or for her prior stalemate for that matter. As they put it "she is a sick kid." (I like that terminology, it sounds like she's battling a cold or something.)

We've hit the 3 week mark and I'm about to start putting hash marks on the door to keep up. Your kind words of encouragement, care packages and meals have truly sustained and overwhelmed us. I actually left the building today and went out for lunch with two of my fav soul-sistas from Village, Jennifer and Wendy. It really hit the spot - the conversation and the food! Thanks also to Maddy's mom for the yummy meal, and totally out of the blue!

Please pray for wisdom for the doctors. I keep thinking that there is something we're missing but I know that is just because I'm a worried, medically-ignorant Mom. Even if the cause is unclear, let us find a treatment that successfully heals her lungs and mobilizes the fluids once and for all. (Out of your caves you wimpy Osama-germs and fight like men!!!)

Our friend Lexie could also use your prayers. She was supposed to have her tumor resected yesterday but her platelet counts were too low. They had to postpone the surgery an entire month and are adding another round of chemo in the meanwhile. Talk about a roller coaster! (caringbridge.org/visit/lexiethornton)

Slow Going

2007-03-19T12:56:00.000-07:00

Lillian has defeated the evil infection and is off of the antibiotics. She is still retaining about 4 liters of fluids. They feel that they have "wrung her out" as much as they can with the diuretics and now it is time for her body to give up the fluids on its own. Once her organs realize they are okay, her body should feel safe to release the fluids. Her lungs are still pretty sick so she is still on the ventilator. The docs say it may be another week or two until she can be extubated (ie - off the ventilator).

Overall her recovery is slow. There are days of stagnation punctuated with little steps forward or backward. Basically, she is just taking her own sweet time. But that's okay with us as long as she remains comfortable. Perhaps she just needed a good rest after fighting so hard against cancer all these months.

In the meanwhile, our fav Physical Therapist, Shana, is keeping her limbs loose. I've made it to church two weekends in a row. We are still tag-teaming the night duty so one of us gets to sleep at home in our own bed. And I swear spring has sprung overnight. I left the hospital and was amazed to see the flowering cherry trees and daffodils in bloom. I can't wait for Lillian to see all the pretty flowers and trees!

A month in the PICU will certainly give us a new perspective on just about everything. We've already been there for 2 weeks and the days are a blur. I'm guessing this is what prisoners go through. We certainly have more freedoms and are choosing to be incarcerated for the most part so I'm not trying to be over-dramatic. But, the confinement, the limited meal choices, the hard bed, the infrequent time out of our cell, I mean room, all lead to a rather monotonous, dazed routine. It's easy to miss the lives all around us rushing past while ours are on hold. Soon enough, we will be sprung from the pokey and life will resume its sprinters pace. But this time with the perspective of what an involuntary pause feels like. Lance Armstrong started a foundation in support of people affected by cancer. He chose the slogan "LiveStrong" because before cancer he just lived but now he lives strong. That is our intention as well.

"Life isn't measured by the breaths you take, but by the moments that take your breath away."

Progress

2007-03-14T12:55:00.000-07:00

Okay, I may have been a bit overzealous in saying "won't be too much longer" until she's off the ventilator. I blame the commander of the fluid troops. He must have been caught up in some red tape (you know, filing paperwork, gaining approval up the chain of command, that kind of thing). Cause it took until yesterday for him to mobilize the troops. And then in one day, she "mobilized" almost a liter more than she took in. So, 1 liter down, 7 more to go.

The docs will tell you they finally found the right combinations of diuretics. But I know God is at work here. At the exact hour Lillian's Grandma Deborah was attending a mass held in her honor, Lillian "mobilized" 300 cc's of fluid. And the night prior her Nana Linda had a dream that Lillian would be better. And I was able to finally attend church Saturday night where the entire congregation prayed for Lillian. God is hearing your prayers my friends and He is doing amazing things. Thank you, thank you, thank you!!!

She is still sedated but is a bit more alert as they wean her from the vent and force her to breathe more on her own. Now that her eyes aren't as puffy, she is able to open them. Call me crazy but this morning she opened her eyes and I SWEAR she smiled at me. Granted she has a couple of tubes in her mouth and a big piece of hardware called a bite block to stop her from chomping down on the tube, but the edges of her mouth definitely curled up. I tell you, there is nothing sweeter than seeing your baby smile. Praise God.

Mobilize the Fluid

2007-03-08T13:50:00.000-08:00

The docs say she is doing well though to look at her it doesn't seem much has changed. She is still "puffy" which is an understatement unless you consider the Michelin Man to be retaining a bit of water. The doctors keep telling us that she needs to "mobilize fluids" as though she has a little military command post inside her. "All right men, we need to mobilize. Yellow squadron, go through the kidney. Green squad, out the nose. We'll see you all on the outside. Now, move, move, move." If that is in fact the scenario, I'd like the commander to stop smoking stogies in the officers' tent and mobilize the forces NOW. As of last count, she is 4 liters to the positive. Meaning 4 liters more fluid has gone in than has come out. She's making some progress since they've put her on a regular schedule of diuretics.

She is still on the ventilator though they have lowered some of the settings to begin weaning her off. She takes breaths on her own between the breaths forced on her through the tube. It'll be at least a few more days until they consider removing her from the ventilator completely. Although she's still sedated, she does kick her feet and wiggle her fingers...particularly when they're doing something she doesn't like. She's still in there making her wishes known!

This hospital stay is strange since we're just sitting around willing her to get better. We're keeping busy between video games (Jeff), the daily Jumble (Jeff), books (Lori) and making blankets (Lori). We keep a steady flow of her favorite songs playing to drown out the beeps and hums of the hospital equipment. Since she is "schnockered" (again, their term, not mine), we are able to tag team as well. While one of us stays bedside, the other can run home and do laundry or grab some necessities (aka - outside food).

A huge THANK YOU to Beth for the yummy brownies and Katie for the delicious soup, rolls and warm blanket. We're not very good "receivers" and are terrible "askers" but we appreciate your unexpected thoughtfulness. And thank you to the docs, nurses and staffers from the other departments who stop by to check in on us. Always the gracious host, Jeff considered hosting a pizza and beer party last night to accommodate the surge of kindhearted hospital personnel. I told him he's likely the first person to consider bringing beer to the PICU.

Anyhoo, that's all for now. I'll update again when she's off the ventilator. Shouldn't be too much longer!!!!!

Everyone Needs Help Sometimes

2007-03-05T14:24:00.000-08:00

After battling 6 rounds of intensive chemotherapy, Lillian's weak little body needs some help. She tried with all of her might over 2 laborious days to overcome an aggressive infection but was finally transferred to the Pediatric Intensive Care Unit on Sunday morning to get help. She is now stable with the aid of a ventilator to breathe for her and medicines to keep her sedated and manage everything from pain to the infection. Apparently this type of infection is common with the type of aggressive chemotherapy she endured. For now, we are thankful that she is comfortable and all of the machines/meds are allowing her body to focus on getting better. We are assured that most kids recover from this but she is very sick right now. As her counts recover, the white cells will attack the infection and may cause her to get a bit worse before she gets better. As she is still immuno-suppressed, no visitors are allowed. We can feel your support through prayer. Please pray for our brave little fighter.

Cancer Community

2007-03-03T18:08:00.000-08:00

If there is any good to come from cancer, it is the community of fellow fighters, caregivers and survivors that is created. I want to share the websites of two of our favorite super-strong Doernbecher fighters so that our amazing support team can pray for them as well.

Grady is a dino-lovin', cancer-killin' little man with Leukemia. You can check out his story on caringbridge.org/visit/gradynewsom. He is battling a fever right now too so please pray that his counts continue to stay high and his cultures come back negative so he can fight the fever in the comforts of home. And a huge thank you to his mommy, Katie, for bringing us a yummy home-cooked meal tonight! Yum-o!!

Lexie is the sweetest little 3 1/2 month old who has been battling a brain tumor from birth. She's going through the same chemo as Lillian and is on her 4th round as we speak. Pray that this chemo and her tumor resection surgery planned for March 22nd both go perfectly. As her mommy, Robyn, says "these are God's children not the doctors. Don't tell us what they can't do." Gotta love that passion and fight! Amen sister, through God all things are possible. You can keep up with Lexie's fight at caringbridge.org/visit/lexiethornton.

Thank you for expanding your support circle to include these amazing kids! We feel very blessed to count these two families as founding members of our cancer community.

The Parent-Child Band

2007-03-03T16:49:00.000-08:00

At the time God entrusts one of his children to the care of a parent, I think he connects you together with an invisible elastic band. As your child grows, the strength of the band is tested and stretched with each move toward independence. When a new mom returns to work and entrusts a newborn to someone else's care, she feels the distance as she stretches that band to it's current short limit. I can only assume that there is a similar feeling as that child pulls out of the driveway alone flaunting their new drivers license and stretching that band a little further. Now I know that when your child is in pain, they pull the band to bring you near. Yesterday, Lillian was yanking on that band with all her might. As I felt it's pull tighter and tighter, I also felt the lack of control pulling me in the opposite direction as the doctors debated their plan for her care for what seemed like an eternity. That helpless tension tug-of-war is the worst feeling in the world.

Lillian started grunting with every exhale as we drove home yesterday from a routine clinic visit. That happens sometimes when her counts are low and she is fighting the cancer with all of her strength. But this time it seemed different. So after throwing some bags in the car, we returned to the clinic where they found that her blood oxygen level was low and put her on oxygen. Simultaneously, she developed a fever of 103.9. Finally we were admitted to the General Peds floor and she was put on morphine to help the pain. After a long night and multiple tests, her fever has subsided but she continues to need oxygen and morphine to keep her comfortable. We can only assume this is an infection as is common in immuno-suppressed kids.

At this point, our biggest concern is getting her comfortable while her counts return to help the antibiotics fight whatever this is. I share these tense moments because we need your prayers but also because this will serve as a journal of our experience. I hope this does not overwhelm or burden you. Please pray for Lillian's comfort and speedy recovery. May God lift her burden and let our elastic band loosen a bit.

Post-Chemo Updates

2007-02-25T20:37:00.000-08:00

Just a couple quick updates -

Friday morning the nurse practitioner from Neurosurgery, Laurie, tapped her shunt. She is the nicest person in the world and stops by often just to say hi and see how Lillian is doing. (Yes, without even billing us! Rare in the medical world.) Because she is one of our favorites, we were happy that she would be doing the procedure. She was also thoughtful enough to put numbing cream on the site prior to the poke. Unfortunately, she was not able to draw enough fluid to run the test. They don't think that Lillian has an infection but wanted to run the culture to double check. Plan B is now to watch for any fevers or other signs of infection. Again, so far, so good.

The stem cell transplant went as expected. (Reading between the lines, it was as miserable as always.) Partially because of her allergic reaction to the prior two transplants and partially because our room was right outside the nurses station, this time we had 2 nurses and 2 doctors tending to Lillian throughout the procedure. This constant attention led to more tests and medications than previous transplants. Once the swelling and vomiting started, they decided to give her epinephrine (adrenaline). The epi caused her heart to race and her blood oxygen level to fall a bit. They decided to give her an ekg and a chest x-ray to ensure her heart and lungs were functioning normally. After all of this, they decided to keep us another night. (We'd already packed the car so we all slept in what we had on.) Finally Saturday morning after a platelet transfusion, we headed for home.

We're hoping for some good rest tonight before heading back to the hospital for a clinic visit tomorrow morning. I won't burden you with details but we are making what I would consider cancer's version of "Sophie's Choice". Radiation is not a clear cut decision for a two-year old. There are risks to doing it and risks to not doing it. Unfortunately there is not enough evidence to clearly determine which are the better risks. We are praying and researching and getting the advice of our team of doctors. Please pray that God would give us wisdom and peace with this decision.

Done with Chemo - Another Battle Won

2007-02-21T16:43:00.000-08:00

The big moment has finally arrived. Lillian is done with chemo as of 6:30pm tonight. Though this battle is by no means over, we have been told to celebrate all of the milestones along the way. And what a milestone this is! I'm sure no one is more excited to put chemo behind us than the little fighter herself. Praise to the Great Physician for His healing. And prayer for His continued strength, healing and wisdom as we continue forward.

Here are some of our upcoming battles:

Her last stem cell transplant (another milestone) is on Friday after which we will head home.
Now that she has completed the cycle of antibiotics, the neurosurgeons are monitoring her shunt and plan to tap the fluid on Friday to test for any "bad guys" (their words, not mine). So far so good!
In the coming weeks, her counts will plummet and rise again along with her comfort level.
A hearing test followed by adjusting to life with hearing aids.
Though we have yet to make the final decision along with her oncologist and radiation oncologist, she will likely undergo 6 weeks of daily focused radiation on the tumor bed.
Physical therapy, physical therapy and more physical therapy (aka play, play and more play). We can't wait to see our little girl stand on her own two feet and walk.
She will get her first of quarterly craniospinal MRI's the first week in March.

But enough looking ahead, join us in relishing this amazing milestone as Lillian beats the odds and wins the war against cancer.

Cheers to Round 6

2007-02-17T20:36:00.000-08:00

After a busy 2 days of clinic appointments, we are finally ready for the last round of chemo. We plan to enjoy 3 consecutive days free from any medical-related appointments. We even managed to get out of the house a couple of times today! One stroller ride around the neighborhood and a second wagon ride through the local nature preserve. At the nature preserve, Lillian was able to do one of her favorite activities - throwing rocks in the river. (It's the simple things, right?) Though lugging around the two packs of pumps and iv fluids makes outings tedious, we're forging ahead anyway.

Though we know her treatment is not over, I thought I'd take a moment to mention all of the wonderful people at Doernbecher's who have made this ordeal more tolerable over the last few months:

Not all nurses are created equal. Anyone who has stayed overnight in a hospital can attest to the fact that night nurses in particular can make or break your stay. So to all the night nurses who set their watches to turn off alarms before they sound, we thank you!

As you can imagine, there have been many moments where Lillian is just DONE with all of this "stuff". During those times, even our best tricks don't soothe her. To all of the kind souls who pass us sympathetic glances or murmur an understanding word, we thank you.

There are countless teams of talented people who have contributed to Lillian's quality of life and health care. Often the m.d.'s take center stage causing the other teams to be overlooked. To the physical therapists, occupational therapists, speech therapists, audiologists, nutritionists and CNA's, we thank you.

Finally to Kim in the PICU, Kathy the CNA, Kristi the Audiologist, Heather the Audiologist, Shana the Physical Therapist, Laurie the NP in Neurosurgery, thank you for taking a special interest in Lillian.

And to all of our friends and family who continue to support us, THANK YOU! The journey is far from over but I can't say enough how much your prayers, cards, calls and blog comments mean to us.

Cheers to a long weekend and to the sixth and final round of chemo!

Home Again

2007-02-13T13:40:00.000-08:00

After a fairly uneventful stay, we're home. (Except for being a bit bored, I'll take uneventful over eventful any day!) The cultures are negative for any infection but the neurosurgery and oncology teams want her to stay on her current course of iv antibiotics just in case. There is still some question about whether her shunt should come out or not. Both teams will look at the site again next Tuesday to determine any next steps before she is admitted for her last round of chemo. They would also like to "tap the shunt" (draw fluid by sticking a needle in her head) to culture the spinal fluid but they need to wait until after the course of antibiotics is complete. Lillian has toughed it out through this procedure twice already (they don't give any sedation or pain meds, just poke her in the head).

We're back for a clinic appointment on Thursday and then we'll be admitted on Tuesday for round 6. We are so excited to start thinking about the future. Though as I mentioned in a previous posting, radiation is still under consideration. The radiation oncologist is going to stop by next week when we're in the hospital to discuss the pro's & con's. Until then, we'll continue to take it one day at a time.

In the meanwhile, we're administering magnesium and antibiotics through her iv at home. Not a difficult process but carrying her and the connected bag/pump is cumbersome. I guess that is one benefit of her lack of mobility.

Happy Valentine's Day everyone! Give your loved ones extra hugs from Lillian.

A LONG Day

2007-02-10T10:27:00.000-08:00

I was dreading the sedated hearing test. I wasn't worried about the results, we're ready for any scenario. The test was scheduled for 1pm and due to the sedation, she wasn't allowed to eat past 7am. That's a recipe for disaster. When was the last time you skipped breakfast AND lunch? How did you feel? Okay, multiply that by the difference between your age and 2. That's about how traumatic I expected it to be. And I wasn't disappointed, in fact it was a bit worse than I expected.

We arrived at our scheduled time of 11:45. After checking in, we needed to find something to occupy the hour wait until sedation. And since her immune system is non-existent right now, we couldn't be around other people. So we found a quiet hallway and paced up and down trying to calm a very hungry, sleepy little . At 12:45 we returned to the audiology clinic and were escorted to a room. Due to a scheduling conflict, the sedation team did not arrive until 2:45. That 3 hour wait was more than Lillian could handle, she was hoarse from crying by the end.

The test showed hearing loss in high frequencies and in speech areas which means she will likely need hearing adds. A small price to pay for a long, healthy life!

We returned to the oncology clinic after the hearing test (1 1/2 hours late). She needed a platelet transfusion. While we were there, we pointed out some redness in the shunt. The oncology team was worried about the redness particularly given her compromised immune system and admitted us. (Quick pat-on-the-back moment; I packed for a 5 day stay, just in case.) Neurosurgery does not seem concerned by the redness. She's on antibiotics as a precautionary measure while we wait to see if the cultures show any sign of infection. Regardless, we'll be in the hospital until her counts bounce back. If she follows the same pattern as last time, that would be Thursday.

All in all, Friday was a VERY LONG day. I'd put it up there with some of the worst days we've had so far. But she was feeling so poor that the hospital is the right place to be. Please pray for a comfortable stay (confined to our room) and that there is no infection.

Miracles Do Happen

2007-02-04T18:01:00.000-08:00

Hooray!!! After 72 hours, the cultures are still showing negative which means no infection. It really is a miracle. I mean, a tube running from her brain to her stomach was exposed. Exposed to the air. Exposed to the germ-filled air. People, she had a hole in her head. Are you understanding the risk??? And yet, no germs got in. The doctors are amazed. I always knew our little girl was miraculous and now I've got proof.

We're home now but head back for an appointment tomorrow which will likely be an all day event. I'm pretty sure she'll need a blood transfusion as her levels were borderline today. Regardless, a night in our own beds will do all of us some good.

Praise God for miracles!

Change of Plans

2007-02-02T15:53:00.000-08:00

Instead of being back in the hospital less than 24 hours after our discharge, we returned to the ER less than 12 hours after discharge. Lillian awoke vomiting at 1am on Wednesday and as I was changing her sheets I found some drops of blood. After further investigation, we found that a scab on her shunt had fallen off leaving the tube exposed. Now I'm no brain surgeon but I guessed that an exposed tube in her head was a bad thing. So after waking up the pediatric oncologist on call, we headed for the ER on her recommendation. Sparing you the details, she had a CT scan, head x-rays and a poke in the head before being admitted at 6am to the last available bed in the hospital. Thankfully that bed was on the pediatric oncology floor! Lillian had been awake since 1am so she quickly fell asleep despite frequent visits from the nurses and doctors.

Since being admitted, she has had the shunt surgically revised and the open wound closed. The hope is two fold - 1) that the cultures show no infection and 2) that the wound heals to avoid any further infections. We really need this to work as the alternative procedures are much riskier. Thank God she had just completed chemo and her counts were still good enough to endure the surgery and recovery.

She also had the stem cell transplant today. Similar to the last transplant, she vomited for the entire half hour procedure. The knowledge that she only has one more transplant to endure sustained me through the ordeal.

With the transplant and surgery complete, we're now in the waiting game. We need the cultures to come back negative for infection and for her magnesium dosage to get worked out. (Her magnesium level continues to drop despite daily iv doses.) Likely we'll be heading home in a couple of days. Thankfully she is feeling better every minute.

Please pray that there is no infection and that the appropriate magnesium dosage is determined. Praise God that there was a bed available and that we caught the exposed tube quickly.

Crazy Days

2007-01-31T20:54:00.000-08:00

What a crazy couple of days! (I feel that I've said that a few times in these blogs. Yet it still fits so I'm going with it.) I've tried to keep the details to a minimum in the past but I think it's worth recounting this chemo visit with a little more specificity. (Before anyone panics, chemo went well and we got home this afternoon.)

Now, to start at the beginning. We arrived for our pre-admission appointment at 1pm on Monday. Jeff and I took bets on the car ride to the hospital on when chemo would actually start. I took 7pm and he took 9pm. In hospital time, a 6 hour wait is fairly standard. (I think of it like dog years, 6 hours is like 15 minutes in hospital time.) Here are some of the highlights of round 5:

We fully intended to put in the feeding tube. The doctor asked a nurse to explain the placement of the ng tube and the feeding process. It is placed in through the nose and into the stomach. It has to be removed and a new one placed every month. The placement is quick but they expected that she would cough, gag and likely vomit during the procedure. When I mentioned that she only has 6 weeks left of treatment, the nurse look shocked and asked why on earth we wanted to do this with so little time left. Enough said. We decided to postpone the feeding tube until her weight drops again since she has been holding steady despite eating virtually no solid foods.
We have learned after 4 tries that Lillian will not tolerate the hearing test. We try, she screams and we end up waiting for her to be admitted and is asleep at which point they bring a portable machine to our room for the test. Instead of torturing her unnecessarily yet again, we opted to just wait until she was asleep. The catch was that this time they wouldn't admit us until the hearing results were reviewed. Should the results be poor, they want to adjust the dosage of one of the chemo drugs (carboplatin) to avoid any additional damage. So we found a curtained bed in the clinic and got her to sleep. Unfortunately the test showed a significant change in high frequencies. A few hours later, they were hanging the bag of chemo and I asked if the dosage had been adjusted. The negative response sent a ripple of communication to better understand the decision. Finally the chemo started at 6:35pm (I point that out only so you can see who won the bet) with no adjusted dosage. Long story long, she'll have a sedated hearing test a week from Friday to identify whether the hearing loss is in the speech range or not.
Her counts were also lower than expected but fortunately were not too low to proceed with the chemo. She received a blood transfusion on Monday night to help with the red blood cells. I'm expecting she'll need more transfusions between treatments this time since the counts did not rebound as high as they had previously.
After we thought the radiation discussion was behind us, it rears it's head. Her doctor told us that there are some new studies that she'd like to review with the Radiation Oncologist before putting the idea to rest. We appreciate her detailed follow-through and ultimately we want what is best for Lillian despite the indecisiveness.
Caution: this is the graphic poo portion of this report. If you are squeamish, feel free to skip ahead. Lillian has been having unbelievable diarrhea for weeks. We're changing upwards of 10 diapers a day and washing a LOT of poopy clothes. This is a side effect of the high dose of magnesium she is on to try to maintain her magnesium level. Our doctor decided on Monday to cut back her dosage and give her a bolster intravenously. They halved her dosage yesterday only to see her magnesium level drop below the threshold. For some reason, the bolster was not ordered so today they waited until today (our discharge day) to give to the 3 hour iv push. We'll likely switch to intravenous doses at home as well instead of continuing the oral doses.

Less than 24 hours after our discharge today, we're expected back at the hospital for her stem cell transplant. At our request, they're adding an additional anti-nausea medication to her pre-meds to try to make the process a bit less traumatic. After that, we're back in clinic twice a week for counts and transfusions.

I tell you, it's amazing to see all of the different families going through this ordeal. I spoke with a Mom of a 5 year old daughter and was amazed to hear that their hospital stays are a month long each time. How do you keep a 5 year old entertained for a month in a hospital? And another Mom has a 10 week old baby girl who was born with a brain tumor. They identified the hydrocephalus in utero and induced the baby early to place a shunt. I can't believe what that baby has gone through in her first few weeks of life. And yet another Mom of a 5 year old boy was talking about the financial burden they are facing. The premiums were too high to insure the whole family so they hadn't insured they're son. What additional stress that would place on an already grueling situation. Though it's heart wrenching to believe, the oncology floor at Doernbecher's is always full. They are constructing a new space in order to open more beds. Our story is in fact just one in a long line. As my eyes continue to be opened to the other cancer battles around us, I can't help but count my blessings. Thank God our insurance has been tremendous. Thank God that Lillian had nearly 2 years of good health before this hit her. And thank God that our hospital stays are just a few days. Lillian's story may be one in a long line but this one is going to have one heck of a happy ending.

Freedom Game

2007-01-26T20:21:00.000-08:00

Good evening, we begin our show with highlights of the 3 day tournament called the Freedom Game. First, meet our contestants. In this corner, weighing 12 kg, in the red robe is "fattening." And in this corner, competing in his first Freedom Game, wearing the blue robe is "fun."

Day 1 of the tournament was a decidedly one-sided match. The final score was fattening 0, fun 2. We nearly deducted points from fattening as all food that was taken in was sent flying back out one end or the other. Fun clearly won this battle with a trip to the zoo, a walk in the balmy 50 degree heat and swinging/sliding in the yard.

Day 2 of the Freedom Game brought a surprising twist. For the first time in the history of this tournament, a negative score was posted. It was too cold for outdoor games so fun opted for browsing at the pet store. Only one point was awarded due to some poor sportsmanship in the form of whining. Fattening took a difficult hit with virtually no food going in yet somehow lots coming out. The final score was fattening -1, fun 1.

Day 3 brought an exciting conclusion to our game. Despite best efforts from both contestants, there were no points scored! Fun tagged his teammate fatigue early in the match. Unfortunately this did not prove to be a good decision as fatigue spent most of the game watching tv on the couch. Food continued a poor performance with a steady exchange of nutrients coming in and going out. The final score was fun 0, food 0.

Due to the clear upset in this game, we are opting for a feeding tube to give food a fighting chance in subsequent battles. Fun has run out of tricks and will likely perform similarly in future games. Contestants will be training with chemo on Monday and their performance is expected to be affected.

And that concludes our coverage of the Freedom Game. Good night.

PS - We met with the Radiation Oncologist today and have decided not to add radiation to her treatment at present. This will give her brain time to mature and should the tumor reappear on later MRI's, we can choose to radiate then with no change to her prognosis. It's good to have that question resolved and to know that after 2 more rounds of chemo, her treatments will be complete!

Divine Transportation

2007-01-21T13:39:00.000-08:00

The first half of last week was the lowest point we've seen in Lillian's treatment. She wasn't eating. She wasn't sleeping. She wasn't playing. We were pretty certain that her appointment on Tuesday would involve blood and platelet transfusions. And we were hopeful that as in the past, those transfusions would help her feel better instantly. So imagine our distress when we awoke Tuesday morning to see the snow falling. God truly put His arms around us and guided us safely to the hospital despite the treacherous conditions. That's what I call "divine transportation." Roads we travelled on were closed shortly after we passed by. It took our doctor 3 1/2 hours to travel the 12 miles she lives from the hospital. The news was filled with images of cars helplessly sliding into each other. But we travelled effortlessly...and we made it to our appointment on time.
Though she didn't perk up right away, after a total of 3 platelet transfusions and 1 blood transfusion in 7 days, she is feeling better. But the experience of spending 5 days doing nothing but watching cartoons and sleeping has left an indelible impression. For example, when she was finally up to taking a blanket ride and wanted me to pull her faster, she shouted "accelerando" (a line from Little Einsteins). Oh well, too much tv is just one of many bad habits we'll need to work on after her treatment ends. For now, everything is free game.

We have three uninterrupted days at home this week to get her fattened up and feeling stronger while her counts are good. On Friday, she will have a kidney test again. On Monday she has a hearing test, a doctor appointment and will then be admitted for her 5th round of chemotherapy. It's funny how something can fly by so quickly and yet seem so slow at the same time.

Sick of Being Sick

2007-01-15T15:00:00.000-08:00

Lillian is sick of being sick. She's hungry enough to ask for food only to have one bite before the nausea sets in. She's bored enough to want to play only to need a rest 5 minutes later. How can a 2 year old be content to lay around watching cartoons all day? How can anyone thrive on a few bites of pancake? I can see her tolerance wearing thin.

I am sick of watching her feel sick. It's agonizing to watch your child feel lousy and not be able to fix it. I know the light at the end of the tunnel is growing brighter but this last half seems to be moving in slow motion. What I wouldn't give for one day in the midst of this with the old Lillian.

We recently met a family with a 3 year old newly diagnosed with Leukemia. They have 2 other kids at home and 3 1/2 years of chemotherapy ahead of them. It brought a new perspective to our battle. Here are a few thoughts that have been filling my head since meeting this family:

I am thankful:

Lillian likely won't remember any of this.

She isn't missing any school.

The treatment is only 6 months long.

My amazing company and generous manager granted me this time with Lillian.

Jeff and I only have Lillian to focus on right now.
For the Barney song that allows me to steal a hug and a kiss everytime we hear/sing it.

I miss:

Watching my little girl play with other kids.

Trying to keep up with her as she runs around the park.

Eating at a restaurant. (It's not due to a lack of invitations, thank you all.)

Work - my wonderful teammates and flexing my mental muscle

Innocence - not knowing how to give a shot or flush a line or how to pronounce medulloblastoma

But mostly my mind is filled with what time she needs her next dose of magnesium and whether to call the doctor about her diarrhea. And always the nagging worry of recurrence or worse. Pray that this treatment does the trick and our little girl grows into the beautiful woman God created her to be.

Just Two More

2007-01-09T21:08:00.000-08:00

The past 5 days have been so all over the board that it's hard to know where to begin. I guess I'll start with a recap of the bath situation:

Bath #1 - Tried a shower at the nurse's suggestion. Big mistake.
Bath #2 - Oversized infant tub + video + rubber ducky = success
Bath #3 - Same formula, different result. Screamed through the whole thing.
Bath #4 - Alas, strike 3
Bath #5 - If there were 4 strikes, this would be it.

Ironically, she played for 1/2 hour in the tub tonight at home. She splashed water everywhere, giggled hysterically and cried when I finally said the bath was over. Jeff and I just shook our heads and enjoyed her smiles.

Now to back up to the chemo. We arrived at the hospital at 9am on Friday only to be told that there were currently no available beds but they were expecting some to open up that morning. Jeff got the BRILLIANT idea to ask if we could go home while we waited. They agreed to call us when a bed was ready. At 4pm (yes, 7 hours later, good thing we didn't wait there), we got the call, jumped in the car and headed for the hospital. We were literally turning onto the hill to OHSU when we got another call saying they had to give the bed to an emergency patient. So we were re-directed to the clinic where she waited until 7:30pm to be admitted. Her chemo didn't start until 9:30pm.

The two nights of chemo went well. She played heartily during the day and had minimal side effects. She was to have a stem cell transplant 48 hours after her last chemo treatment and we were obliged to wait that out at the hospital. Both days the nurses unknowingly teased us with the idea of a 4 hour pass to go home only to have the doctors veto the idea. Finally the wait ended and the transplant was scheduled for first thing this morning.

We were told that the transplant would be similar to a blood transfusion. Just a 4-hour drip through her line. But when the nurse arrived in the playroom this morning with 3 different pre-meds, I knew this was going to be different. Though medically the transfusion went normally, it was far from routine for us. In order to take her vitals every 5 minutes, they attach a blood pressure cuff to her leg and oxygen monitor to her toe (which is no more annoying than a band aid). The oxygen monitor posed the first challenge as Lillian screamed throughout the procedure that she wanted it off NOW. Undoubtedly exacerbated by the fit she was throwing, Lillian also vomited throughout the last half of the transplant. Apparently they treat the stem cells with a preservative that some kids don't like. And we have found that Lillian generally falls into the category of "some kids" or "infrequently" or "every so often". Fortunately, the doctors also exaggerated the length of the procedure and about 45 minutes later, the transplant was complete and Lillian drifted into a medicated slumber. All I could do was look at Jeff and say "just two more."

After all that, we're home happily looking forward to sleeping in our own beds. Though that was the longest I had been apart from Ched, I will gladly wait another 17 days to see it again. Good night!

Super Girl

2007-01-02T15:07:00.000-08:00

Our Super Girl has done it again! Her counts in all areas are remarkable. So we can proceed with chemotherapy as planned.

But (yes, there is a but), we need to wait until Friday to begin. The next 3 rounds of chemo are more aggressive and will require transplants of her previously collected stem cells to aid her recovery. Since they only do stem cell transplants on weekdays, her chemo needs to begin on a Monday, Tuesday or Friday. That will allow for 2 days of chemo and one day of rest prior to the transplant.

The other fun fact about one of the new chemo drugs is that it secretes through her skin. That means that she will need a bath every 12 hours. Prior to her diagnosis, a bath twice a day wouldn't have been a big deal. But now a bath will produce a guaranteed tantrum. Since her central line and it's surrounding dressing cannot get wet, we have to apply a plastic patch over a majority of her chest that gets taped down. That's enough to make anyone hate baths!

Praise God for giving Lillian such super healing powers and pray that she endures this new life-saving cocktail with ease.

Happy New Year

2006-12-31T12:03:00.000-08:00

As many people enter 2007 vowing to eat better, I thought I would share our top 10 nutritional learnings from the last few months:

If one person in the house is on a high-fat diet, everyone in the house is on a high fat diet.
The hospital meal rejected by the pediatric patient should not be used as a supplemental snack for an adult.
Homemade brownies will add pounds to everyone who eats them, except to the person trying to gain weight.
Just because a menu is designed by the Food and Nutrition Department of a hospital doesn't mean it's healthy.
Weight is balanced across a family. As one family member loses a pound, the others must gain it. It is also acceptable for the other family members to gain some multiple of said pound.
Something akin to the Bermuda Triangle is formed between a person, a meal/snack and the tv. Food just disappears.
Half and Half is exactly what it says...half a pound in half a glass.
You cannot push a stroller up and down a hospital hallway long enough to burn the equivalent calories found in a Starbucks peppermint hot chocolate and cinnamon roll.
If a carrot makes you feel better in a stressful situation then a carrot cake will make you feel a lot better.
If you only wear sweat pants, eventually you will only fit into sweat pants.

As I prepare to enter the aforementioned Bermuda Triangle, I want to wish you all a happy and healthy 2007. We are confident that with God's help, great things are ahead for us in this new year.

Drama-filled Days

2006-12-28T14:06:00.000-08:00

Everybody sing it with me (to the tune of Hi Ho the Derry-O):

The MRI was clear
The MRI was clear
The chemo is working
The MRI was clear

It was a long, grueling day but worth it to hear that there are no signs of the tumor on the scan. We arrived at 7:30am but were kept waiting and trying to entertain a cranky, hungry 2 year old until 8:30am. She was fussing in Jeff's arms when they finally administered the sedation and with a single breath, she fell limp. Even though we've experienced this bizarre change several times, it never ceases to disarm me. After a 3 hour MRI, she awoke a very unhappy child. We had tried to dictate the sedation medication from our prior experiences but she had what they call a "rough wake-up" nonetheless.

We carried our crying child to the clinic and tried to calm her in the waiting room. The receptionist who was either sympathetic or exhausted from hearing Lillian scream finally arranged for a room. After turning out the lights and hugging her quietly, Lillian finally relaxed. As expected, she needed both blood and platelet transfusions which take about 6 hours combined. Needless to say we had the clinic all to ourselves for several hours late into the evening. We left the hospital at 8pm after a twelve hour day exhausted and not all together ready to return the next morning for her kidney test.

This was by far the most smooth of her 3 kidney tests to date. The poke was quick and relatively painless thanks to the numbing cream we'd applied in advance. Lillian played happily over the 3 1/2 hour wait and all three blood draws went well. Even the weekly dressing change which is normally drama-filled was over in a flash. As though she sensed that things were progressing too easily, Lillian decided to throw the king of all tantrums once we got home this afternoon. Who can blame her really? She has been poked and squeezed and annoyed for a day and a half straight. She is now sleeping peacefully which is sacred time for all of us. In fact, it's time for me to rest and veg out for a rare moment.

We aren't due back to the hospital until Tuesday. Because her platelets dropped so low, they may not recover in time for our scheduled inpatient chemotherapy on Wednesday. We will have counts drawn on Tuesday to see if she can continue on schedule or delay it a week. Although the doctor assures us that it is normal to have delays, we are still hopeful that we can continue as planned. On one hand, it's hard to believe that we're already half way through her chemo. On the other hand, it's hard to believe that we're only halfway through her chemo. Please pray that her little body can produce the required platelets, white cells and red cells by Tuesday. And, I almost forgot, praise that she has gained a few ounces in the past week! (Haven't we all???)

Check It Out

2006-12-26T11:20:00.000-08:00

Here are the highlights from a very peaceful yet worrisome Christmas day:

We were up at the usual 6am but by 7am I couldn't stand it anymore and made her open presents. What is wrong with this child that opening presents wasn't the first thing on her mind in the morning???
Every gift opened would elicit a "wow" response...even just for the box
I don't know where she picked it up but with every gift she would also say "check it out." I got it on video but par for the course, we ran out of tape after about 5 minutes.
Like a typical 2 year old, she wanted to play with each toy as she opened it.
She continues to be very fastidious and as she tore off even the tiniest piece of wrapping paper, she handed it to one of us to put in a garbage bag. This must be done prior to any additional unwrapping.
It took Jeff and I another hour to put together all of her new toys. I don't mind since I am just as excited as Lillian to have new toys to play with.
Exhausted by 10am, Lillian took her first of two naps. The second was at 5pm despite our concerns about bedtime disruption. Sure enough, we couldn't get her down for bed until 10:30pm.

The worrisome part is that her platelets and red blood cells are clearly low. (Platelets are what help blood to clot.) The slightest bump causes an immediate bruise and a cut on her lip has turned into a major blood blister. The nurse assures us that this is normal with low counts and feels that the transfusions can wait until our clinic appointment tomorrow. I appreciate the reassurance but each new bruise or bump still makes me nervous.

Lillian has a MRI tomorrow morning prior to her clinic appointment. This is to verify that the tumor is not visible since they resected it completely. This requires sedation which should be simple since the can administer it through her central line. Please pray for positive results! We then head to clinic where she'll have her usual outpatient chemotherapy in addition to the anticipated transfusions. Thursday she has yet another kidney test. This one requires a poke followed after 2 hours by three blood draws 1/2 hour apart. The toughest part of this test is typically the waiting (and the poke of course). Please pray that for endurance and creativity as we entertain her for most of a day in the waiting room.

I hope you all had a wonderful Christmas. Thank you for your continued prayers, comments and support.

Christmas Eve

2006-12-24T14:39:00.000-08:00

T’was the night before Christmas and we’re still in our house,
Not a creature is stirring, except with our luck, a rat or a mouse;
The stockings are hung by the chimney with care,
In hopes that someone remembered to buy gifts for in there;
(No need to worry, Mommy has come through
During nap time she picked up a stocking stuffer or two.)

Lillian is nestled all snug in her own bed
While visions of car rides and parachute games fill her head;
She’s feeling pretty poor with counts oh so low,
She’s pale and tired and moving pretty slow;
But that is expected and soon once again
She’ll feel up to playing with Barbie and Ken.

Gifts from loved ones are piled beneath the tree,
But this Christmas, the phone will be our only contact with family;
With an immune system so weak, germs are a legitimate fear
So we’ll have to forgo visits from all of you so dear;
Next year will be different, she’ll be feeling all right
We’ll shout from the rafters “Merry Christmas and good night!”

We wish you all a Merry Christmas and Happy New Year,
Remember to cherish this special time with the people you hold dear.

The Future

2006-12-22T14:25:00.000-08:00

I came back into the living room yesterday morning to see Lillian talking on the phone, watching tv and playing a video game - all at the same time. I think I just got a glimpse into her teenage years and they're filled with tech toys.

Speaking of technology, if I could figure out how to make two photos in one post look attractive, I would feel a bit more secure in my blogging abilities. Instead you get to read two separate back-to-back postings just so I could show you both pictures. Perhaps I should ask the 13-year old who lives next door, she would probably know how. She could probably also get my tivo to work but that's another story.

So far, so good

2006-12-22T13:50:00.000-08:00

We're still at home and Lillian is doing well. Her counts as of Wednesday were good but we expect that by today they are low. They should recover around New Years if the pattern continues.

She also had her first physical and occupational therapy appointments this week since beginning chemotherapy. We had to wake her up from a nap to drive to the appointment so we were uncertain of how successful the therapy would be. But she was a trooper and did beautifully. The occupational therapist assessed her left arm to be functioning normally and her right arm to be functioning at around a 6-month old level. We believe that is due to the tumor resection and should recover with time. A big benefit in her recovery is her motivation to use her right hand. She complies when asked to use "righty" and often will use it first without being asked. The physical therapist has been working with Lillian on and off as an inpatient client since her diagnosis. We haven't seen her in a while and she was very impressed by Lillian's progress. That's our super-girl!

Attached is a photo of one of her favorite activities, a blanket ride. (Sometimes the best toys are free!) She happily crawls on the blanket, exclaims "all aboard" and the ride begins. An added bonus is the blanket sweeps the floors. Perhaps I should try spraying it with floor cleaner and it could double as a mop. Hmmmmm....

Oops, I hear the dulcet tones of a nap coming to an end. Gotta gear up for more blanket rides and parachute games. I'm just glad to see her appetite for playing hasn't decreased!

Toddler-Ease

2006-12-18T20:53:00.000-08:00

It seems that the chemo has caught up to Lillian. She is enjoying her toys and continues to grow stronger. But there are dark circles forming under her beautiful brown eyes. Her clothes continue to hang more loosely about her frame. And the periods of happy play are more frequently interrupted by whining and crying. If there was any doubt that the chemo was working, they have been erased.

The challenge we face as a 24-hour caregivers is patience. Watching my child battle a life threatening illness has given me a new perspective on the value of each moment we have together. However, it does not make me a saint. Fortunately when I run out of the precious commodity known as patience, Jeff seems to have a positive balance and vice versa. God truly does provide in times of need.

One such moment occurred during a car ride a few days ago. Lillian was particularly whiny so we volunteered one of her favorite activities, a car ride. We had just driven a few blocks after we had located the requested buddies (aka stuffed animals), zipped on her sweater, strapped on her shoes and snuggled her into her car seat with a blanket when we heard something that sounded like "de-u-ri-i-b." This utterance of five distinct syllables was unrecognizable. As she desperately repeated it over and over, Jeff and I tried sounding it out. (This is one of our oft used techniques for deciphering toddler-ease.) I had about reached my boiling point as her pitch became more shrill with each passing moment. Finally I turned around and said a bit more sharply than intended "what Lillian???". She repeated "de-u-ri-i-b" but this time added a sign. The sign for car. I silently praised God for sign language as I said with relief "drive, you want to drive?" "Yes, Mommy." How I ask you does a one syllable word, drive, morph into five syllables? Is it any wonder we can't understand these little people? Don't they know what a syllable is? Crisis averted. Often she doesn't really want what she's whining for as much as she wants to be understood.

Today it was something that sounded like "pea pets". Finally I guessed that she wanted to watch the show Wonder Pets. Don't ask me how I guessed that "pea" was actually "wonder", it must have been a God thing. Jeff spent the next few minutes helping her practice saying "wonder pets" until it was understandable. We're not going through that again, that's for sure.

I'm sure you've all been through similar frustrating circumstances. Particularly now that her fuse is shorter, ours needs to be longer. It's a piercing kind of guilt to snap at a child who very likely is in pain. Please pray that God would grant us divine patience. And pray that God would relieve any side-effects that are causing her discomfort.

Desperate in Doernbecher's

2006-12-16T20:46:00.000-08:00

Friends, family, strangers, lend me your ears.

Apparently I have some pathetically desperate need for validation. Are you out there? Are you reading this crazy blog-thing?

I'm withholding judgment on the whole blog universe. Most blogs seem to be individual's random thoughts and opinions thrown against the proverbial wall to see what sticks. I probably...scratch that...definitely would not have a blog if not for the ease of updating everyone on Lillian's progress. Mostly due to the fact that I had never even seen a blog prior to writing this one. (I know, welcome to the modern world.)

However, since I do have one, I'm sadly checking it multiple times a day to see if anyone is reading it. So thank you, thank you, thank you for all of your encouraging comments. They nourish our souls and validate that my scattered mutterings are worthwhile.

Signed,
Desperate in Doernbecher's

Good News & Bad News

2006-12-16T19:50:00.000-08:00

Jeff thinks I should be required to take a nap prior to writing a post but I'm choosing to live dangerously. And given the lack of sleep over the past 3 nights, this is like poking-a-rattlesnake-dangerous but here goes...

Good news: We're home again after round 3 of chemotherapy. She again tolerated it very well.
Bad news: She didn't tolerate the kidney and hearing tests quite as well but we got through them.

Good news: Let's hear a resounding cheer as we reach the half-way point in her chemo! Hooray!!
Bad news: The next half of chemo is more aggressive though we have been told that any side effects will be managed equally as well as in the first half.

Good news: She gained some weight over the week at home.
Bad news: There is something about the hospital that turns off her appetite. We're hoping that we can pack some lbs on her over the next couple of weeks at home.

Good news: We have power and there was no damage to our house in the windstorm.
Bad news: Three trees fell from our property onto our neighbor's house in the windstorm. There is a bit of damage to their roof and gutter but nothing that a tarp can't fix for now.

We know that her counts will be at their lowest over the holidays. But our greatest hope is that she will avoid any of the other symptoms that would cause us to check back in to Hotel Doernbecher for Christmas. They do a truly wonderful job at celebrating holidays BUT it's somewhat wasted on those unlucky few who are confined to their rooms. So please pray that we can spend the next 2 1/2 weeks at home celebrating this wonderful time of year and fattening up our little girl. Though she hasn't officially given us a list, I'm pretty sure this is what the short list of Lillian's Christmas wishes would look like:

A couple of extra pounds
Dreaming of sugar plums in my own bed
Watching rocket (aka Little Einsteins) for the one millionth time

She's very easy to please, don't you think?

Infancy Part Deux

2006-12-12T20:27:00.000-08:00

The good news is that we are reliving the 8-month to 11-month stages. The bad news is that we are reliving the 8-month to 11-month stages. Let me explain.

Chemotherapy is a real hunger-killer. Between the nausea, the mouth sores and the general fatigue, eating becomes a luxury. Lillian has lost a couple of pounds since she started this ordeal and we consulted a nutritionist who gives this advice, "give her whatever she wants, whenever she wants; the higher the calories, the better." Yes, that is coming from a nutritionist! Picture us at the grocery store comparing labels looking for the highest caloric, highest fat foods. It seemed very backwards, I can tell you that. So how does that compare to her 8-month old experience? Many of these foods are new to Lillian. She was a very healthy eater prior to this so chips and hot dogs are very new. She likes some, she doesn't like others, just like her first introduction to solid foods. And also like her first introduction to solid foods, she spits out what she doesn't like. It's very important that we keep the weight on her to avoid a feeding tube.

As I've mentioned prior, sleeping has also become a luxury. The hospital has managed to transition her to a "big girl bed" for us. But Mom or Dad (usually Dad is requested) has to lay down with her until she falls asleep. I know, I know, that is a really bad habit, tell me about it. If only we knew! For naps, we find ourselves driving around the block to get her to fall asleep. Two nights ago Lillian slept straight through from 9pm to 6am. We woke up and looked at the clock amazed, just like we did when she was an infant.

I never thought I'd be so excited to see her crawl...again. But it really is amazing. Up until very recently, she hasn't had enough strength in her right arm to help support her body weight. Last week I bough a big parachute for her to play with since that was one of her favorite Gymboree activities. I set it on the floor and before I could pick her up she had crawled right on top of it. Since then she has been crawling everywhere. She is getting stronger everyday and her balance is improving so I know walking will be just around the corner. In the meanwhile, all of those baby-proofing activities that we have gotten so lazy about have been re-instituted. Cups of water are no longer left on the coffee table. Bathroom doors are closed once again. And Christmas decorations are sensibly placed with a correlation between fragility and height.

Like I said, we get the joy and pain of reliving those early milestones yet again, but this time she's 3 feet tall and talking. That adds a degree of complexity to many adventures.

We're nearly packed for our return to Doernbecher's tomorrow. She has a hearing test, a kidney test and blood work before being admitted for chemotherapy. If all goes as planned, we should be home Saturday or Sunday.

Pray that the tests go smoothly. The last hearing test was a bit of a nightmare, she was definitely not interested in having anything in her ears.
Pray that her appetite persists.
Pray that we can continue to keep her comfortable throughout the chemotherapy.
Praise for her improved strength.
Praise for good counts so that she could have visits from Grandpa, Auntie M, Nana and Papa. It's a nice change from just Mom & Dad.

Reality Show Idea

2006-12-05T16:32:00.000-08:00

I think we have the makings of a hit reality show (or a sick psychological experiment which is really what reality shows are, aren't they?). Ok, here's the synopsis:

Setting: Lock a 2 year old and his/her parents in the child's bedroom for a week.
Rules: They can bring as many toys and other comforts as they can carry in a wagon. Food can be selected from a limited menu and will be provided 3 times a day.
Goal: To see who cracks first, the child or the parents.

No need to try this at home, we can tell you the outcome from our limited field research. It's definitely the parents. Surprised? So were we. And that's the kind of dramatic surprise that will draw in viewers.

We thought today might be the day her counts would be high enough to go home but alas no such luck. We're hoping for tomorrow. I think if they haven't rebounded, we may be forced to flee under the cover of darkness.

I've realized that all of my prayer requests have been asking for help. Tonight, I'll include some praises:

Praise God for every giggle. Even the one at 6:30 as I was awakened by a pacifier on my nose and a little voice saying "tickle, tickle, tickle"
Praise God for every happy memory. Since we can't go for walks, we talk about the walks we have taken in the past. Last night we talked about our trip to the beach last summer and Lillian remembered all the people we were with (Traci, Todd, Nana, Papa, Jack, Ry-Ry) and building sand castles.
Ask God that her counts would rebound so that she feels better and so that we can get out of this little room.

Return to the Pokey

2006-12-02T10:10:00.000-08:00

"Oh Ched, we have to stop meeting like this. People will start to talk."
(For those of you who are utterly confused, Ched is introduced in my last posting.) After a successful round of chemotherapy, we are back in the pokey (as Jeff has appropriately termed it). It guess it was about time for us to return since a week at home seems to be the maximum allowed.

Yesterday Lillian spiked a fever of 100.5 which just so happens to be the exact number that requires a phone call to the oncology clinic. Her counts (red blood cells, platelets, white blood cells, neutrophils) which were remarkably good on Wednesday have dropped predictably to nearly non-existent. *Not to panic, this is the normal response cycle to chemotherapy.* So we're confined to this cozy hospital room for the next few days until her counts recover. This will be aided by transfusions of blood and platelets in addition to ongoing shots of GCSF to boost her white blood cell production. The upside is that we (and by we I mean Jeff) don't have to give her the shots at home anymore!

Speaking of shots, there should be some sort of degree or title earned for the parents of kids with cancer. Between the subcutaneous injections, the daily heparin flushes and the weekly dressing changes for her central venous line, we have certainly performed more medical procedures than the average layperson. I'm considering adopting the title "Certified Oncology Practitioner" (aka COP). It has a nice ring to it, don't you think? But I digress...

Though we are administering this regular routine of torture, I must stop to consider that Lillian is in fact the one enduring it. And enduring it well, particularly for a 2 year old. She is getting so used to pokes that she cries for about 30 seconds and then is ready to play again. The biggest obstacle for her is sleep. She seems to sleep only a few hours max at a time day or night. It's tough to tell whether she is used to being awakened from the extended hospital stays or whether she's hungry since her appetite is minimal or whether she is in pain. In fact, that is our biggest request of all you faithful prayer warriors. Please bring the energy and contentment that only a good nights sleep can deliver. Sweet dreams everyone.

November 24, 2006 - Turf Wars and Turkey Dinners

2006-11-24T12:22:00.000-08:00

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

2006-11-21T22:05:00.001-08:00

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

2006-11-21T21:30:00.000-08:00

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

2006-11-21T21:29:00.000-08:00

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

2006-11-21T21:27:00.000-08:00

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

2006-11-21T21:26:00.000-08:00

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

2006-11-21T21:23:00.000-08:00

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

2006-11-20T15:20:00.000-08:00

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.