Walking With Angels

The Next Chapter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!