Done with the Steroids!!!!

Sunday marked Day 21 of this phase and the last dose of the steroids! Catherine was very happy to hear that it was the last time she would have to take the juicy medicine for a while (we crush the pills and then put it in a syringe with grape juice). Her joy was short-lived as she continues to feel fatigued with intermittent pain, be it her back, her mouth, or a headache. She did take on some visitors this week - Grandma and Pop-Pop came on Tuesday for a visit and then again on Saturday to babysit (Dave and I had a much needed night out with friends), my friend Maria took a personal day from work to cheer the troops up, and Aunt Lauren came Saturday to aid in the babysitting efforts. Aunt Lauren also slept over which was nice as Catherine slept with her so that Dave and I could actually sleep in the same room (the past few weeks Catherine has been sleeping with either Dave or me - it just makes her feel better). Alex benefited the most from the visitors - finally someone to pay attention to him and play with him!! Dave and I sometimes worry how this is all affecting him. Luckily, he is too young to really grasp it and he is always happy, but he certainly doesn't get the attention he deserves.

Today's trip to Guilford was uneventful - just a finger stick test to check the counts (which were fine). She now has a 7 day break before we start the last part of this phase, assuming her counts meet certain parameters. If they do, we are scheduled next Monday to have a lumbar puncture with methotrexate, the first of 8 doses of ARA-C, and her one and only dose of Cytoxan. She will also start a 2 week course of 6-TG at home (it is similar to 6-MP). Catherine is also scheduled for ARA-C on Tuesday, Wednesday and Thursday.

We've gotten a lot of questions about Catherine's eating habits on the steroids. This time around we did spaghetti and meatballs, the chicken legs made a huge comeback in the past week, cake with pink icing, and pizza. She didn't eat around the clock this time and the moon face and the Buddha belly didn't really show up until early last week when they appeared overnight. And, much to my dismay, Catherine's hair began to fall out yesterday. It sort of freaked me out (no matter how prepared you are, it is still rather jarring), but as usual Catherine rolls with the punches. She doesn't care. She actually told me that Caillou (a cartoon character who is a four year old boy for those of you without young kids) takes chemo because he is bald. As usual, my child is more resilient than me!

Week 3 of Delayed Intensification

We finished Day 16 - hooray! Catherine went in yesterday for her last doses of Vincristine and Doxorubicin. Daddy made the trip this time with a very detailed list of questions for the doctors. Apparently, Dr. Joe was very amused by the list and asked Dave if he should check things off so that I know everything was covered...everyone's a comedian! The visit went as expected - her counts are still in a normal range, but they are much lower than last week, and according to Dr. Joe, they will continue to go down, especially when she comes off the steroids this Sunday. As I said, steroids drive your counts up VERY high, so for them to be at the range they are now solidifies for me just how strong the Doxorubicin is (Vincristine doesn't suppress counts). But of course, that just means the medicine is working.

In the last week, Catherine's energy level has plummeted to zero. She spends most of her day on the couch or in Mommy and Daddy's bed sleeping. She is also in some pain - it's either in her back, or her stomach, and of course, the Vincristine induced headaches. This weekend was tough. Saturday, we took a drive to see Aunt Vita, Uncle John and cousins Julia and JV. Catherine was so excited to see them and be able to go in their pool. But, as soon as we got there she started complaining about her back. Based on her screaming I could tell it was bad. I sent Dave out to get Children's Tylenol, but he and JV were gone a long time and with each passing minute, I knew she would need something stronger. I had a precription for Codeine in my bag so, Aunt Vita went to her pharmacy to fill it. Unfortunately, they didn't have it handy (we needed the liquid form without the acetometaphine that is found in Tylenol). By this time, Catherine was in agony and just wanted to go home, so we got her to take some Tylenol and home we went (by the way, Aunt Vita lives 2 hours away!) Spoke to my pharmacy and it turns out that my scrip can't be filled because the drug companies don't make it in a liquid form. Luckily, Catherine survived without it, but we now have some Tylenol with codeine on hand just in case. Sunday wasn't any better. Some friends from Florida came to visit and again Catherine wasn't feeling well - this time a terrible headache. Poor thing spent most of the afternoon crying and then by 5:30 p.m. went to bed for the night.
It is so hard to see your child in pain like that, but deep down I know this must be working and come Fall, we will be on Maintenance and the worst will be behind us.

Things Going Smoothly

Today we are on Day 11 of 42 in Delayed Intensification. So far so good I guess. The steroids haven't been as tough as they were in the first month. Granted, the mood swings are more severe (probably because she has more energy to have mood swings than she did in Month 1), but I have yet to get up in the middle of the night to cook. That may change as her appetite has finally kicked in. Today I was woken up at 6:15 a.m. to make spaghetti and meatballs - from scratch. I'm fascinated by this choice because she hasn't enjoyed marinara sauce since the chemo started. Maybe she is as in to the Barefoot Contessa as I am (that's the recipe I have been using - love it!) She is also starting to wear down more easily - which we expected. The other day she had her friend Olivia over and within an hour she asked me to call Olivia's Mommy because she was tired. As a matter of fact, Catherine is napping as I write this (so is Alex so a rare moment to myself!!) and she will likely be in bed by about 6 p.m. Dr. Darryl told me on Monday that each week, she will get progressively worse as it relates to fatigue and her counts during this phase. Right now her counts are abnormally high from the steroids, but eventually, all the other stuff she is getting will win the war of the counts and drive them all down.
As for Catherine's treatments, we are now on a Monday schedule because of the past delays. We did have an appointment last Friday to get her very last PEG-Asparaginase shot (alleluia!) Aunt Lauren came with us for the visit, and save for one tantrum over a Scooby Doo movie, she did great (Aunt Lauren and Catherine that is). I think Catherine wanted to show her what a big girl she is. It was such a good visit that I finally mustered up the energy to drive into the village of Guilford rather than go straight home when we were done. What an adorable town. When it's not 100 degrees outside I'll actually walk around for more than five minutes.
This past Monday, the visit lasted much longer than I anticipated. She was very moody and clingy and had a few 'roid rages. Her little friend in the office also had 'roid rages so it was quite funny to see both girls eventually calm down and play with each other. On the plus side, a volunteer reflexologist was in the office and I got an awesome hand massage that just relaxed every muscle in my body (at least for the five minutes it lasted).

And So We Begin

Finally, Catherine's counts were high enough so that we could start the dreaded last phase before long term maintenance. It seems the 3 weeks off of everything worked. Catherine was able to enjoy some down time and be her old active self, she regained all the weight she lost and her mouth sores fully healed. She rode her big wheel and went for walks everynight, we hit the playground, we even went to an outdoor production of Lilly's Purple Plastic Purse. It was so great to see her like that and at the same time a little bittersweet knowing that it would soon come to an end. And when Monday rolled around, she bounced into the doctor's office ready to go. I have to admit, I was so nervous about her counts being low that while we waited for them to come back, I thought my heart would jump out of my chest. Luckily, the counts were solid and well above the parameters necessary to start - ANC was 1435 and platelets 285,000.
This phase will last 42 days. Yesterday, Day 1, Catherine received a lumbar puncture with intrathecal methotrexate, Vincristine and a new one for us, and IV drip of Doxorubicin which is a red medicine that will actually turn her urine red. Interestingly, the Doxorubicin is sensitive to light so they put a cover over it while it is being administered. We also started a 21 day course of steroids at a dose 50% higher than she has received before. Needless to say, the active, happy Catherine has quickly disappeared. The Doxorubicin killed her appetite and is making her belly hurt (likely nausea so I have been giving her some Zofran to prevent vomiting), the Vincristine is starting to do it's usual magic of hurting her jaw, and today we experienced some serious 'roid rage. All I can say is 2 days down, 40 more to go.
To make matters worse, I had to take Alex to the doctor today. He just hasn't been his usual jovial self and he had a slight temperature. Sure enough his throat is red and full of pus. We will know tomorrow if he has strep, but Dr. Patty, one of our pediatricians, recommended that if possible send Alex to Grandma's house. And so instead of heading north, I had the pleasure of going the other way, to Long Island. I felt terrible sending him there, but at least he'll get 100% of Grandma's attention vs. 50% of mine if that much right now.
As always, Dave and I are always appreciative our your thoughts and prayers. This has been a tough road for us, and the past couple of weeks, my visits to the doctor's office have not been as comforting as usual. One family I see often received terrible news this week, their 3 year old daughter will need a bone marrow transplant because she relapsed during maintenance. I can't get them out of my mind and I hope you can keep them in your prayers as well. Another family I saw a couple of times lost their child last week. I don't know what he had, but all I can picture is seeing him being comforted in his mother's arms with a binky in his mouth while attached to an IV pole. His brothers, one about Catherine's age, were drawing pictures for him that said how much they loved him. The loss of their brother will be with them forever - so unfair! Please keep them in your prayers too as they deal with their grief. Their cases are not the norm and I had hoped that I would make it through Catherine's protocol without witnessing another patient's death. Wishful thinking on my part. One friend I met says it has felt like a misery chamber there lately. Let's hope that feeling changes soon.

Despite the Delay, Catherine and Alex having Fun