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.