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.