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!

Change of Plans

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

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

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

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

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

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

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.