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.