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.