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.