The Difference a Day Makes (Week 2)

Well, I am thanking God for the joyfulness and simplicity of yesterday because today was far from it. Everything went smoothly, its all just a whole lot more complicated than we had planned. We were at the hospital for five hours today...

We met with Dr. Wofford (the oncologist) and she was wonderful. I have to tell you Julia calls her "Dr. Waffle" and either works for her :) She went through all the study information with us in extreme detail. I mean detail. We started with the 1950s treatment of Wilms' and worked our decade by decade to the present day. I really admire the fact the she respects our intellect and treats us in the manner she does. She and I both refer to studies we've read and research we've done and actually benefit from each other. Its a rapport that I value.

Anyway, as we've said before Julia had a Stage 1, Favorable Histology tumor. In Wilms terms that's like a home run- surgery, 2 chemo drugs, cured. Julia fits this category except for the presence of focal (meaning contained, not everywhere) anaplasia cells which for all intents and purposes bumps you into a whole different camp regardless of stage. There are 400 kids per year diagnosed with Wilms' and around 5% are anaplastic (that's us).  Her tumor was also very unusual and covered in bumps and cysts.

The COG board, the Brenners' Tumor Board, and the Brenners' oncology team have all agreed we need to do the Regimen DD-4A (vincristine, dactinomycin, doxirubicin, and flank radiation). This recommendation is based on the most recent Wilms' tumor study of anaplasia cases NWTS-5 (2006), called 'Nitwits 5' for short (authored by Dr. Dome in DC). Unfortunately, the Focal Anaplasia study only had 9 children with stage 1 Focal Anaplasia (it is very unusual to catch it this early- again we're in the minority) and of those who were given only the 2 chemo drugs, 3 had recurrences and 2 others died. Those are not good percentages (5 out of 9). The current overall survival rates for Stage 1 Focal Anaplasia kids is actually lower than that of stage 2/3 Focal Anaplasia kids- the difference? ...Stage 2 and above cases always receive the higher level of treatment. When Stage 1 Anaplasia was treated with the DD-4A protocol these numbers are not the case.

So essentially it is the best medicine we know at this time and it is proven to work in even advanced stage Wilms' cases. We do not want a recurrence of this disease that would mean starting all over with 3 additional chemo drugs and radiation. We want to take care of this the first time. She will only receive 4 doses, low concentration of the more powerful chemo drug and the radiation will be 1100 units which is the lowest dose used in radiation oncology therapy.

So we agreed this would be our plan of attack and went ahead with this weeks chemo- only one drug this week. (The doxirubicin comes into play in 2 weeks.) Julia did well. She handles it all like its so commonplace. They used a smaller patch this week so there was less to peel off, but she still didn't like it. The doctor had a solution which made me laugh. Next week we will apply the emla at home and instead use Glad press n seal wrap- who knew?! I think this will go over much better. After chemo we were sent to the Cancer Center at Baptist to meet with the radiation oncologist. I've decided I like to stay in our tower at the hospital. Things get so much more complicated when you are sent to other towers. Yet another way our perspective changes- we are happy to just stay in pediatric oncology- never thought I'd say that.

We waited several hours and met with Dr. Kevin McMullen. His staff were all great and worked well with Julia. I have to say meeting him was interesting. He's a dynamic, warm, bald man who wears a giant hot dog on his head. He was very thorough and did a great job going over everything with us. He's obviously very experienced and has actually been studying Julia's case ever since we were diagnosed. (He said he had passed us earlier in the day in the other hospital and still remembered Julia- a really sweet guy.) Anyway, he thinks this is definitely something we need to do. Anaplasia is nothing to fool around with and in this case we know how to treat it. This is one of the highly curable childrens' cancers and we all want to cure it- the first time. He said it is assumed that when Wilms' tumors recur after treatment they were likely anaplastic and it wasn't found in pathology. Pathology actually uses tiny slivers of the tumor to look at under the micrscope- not the entire tumor, so again we are thankful to God that her small patch of anaplasia was even found in the first place. He assured us again that this is a very small dose of radiation therefore it will be unlikely to have any side effects.

So that being said we go back to Brenners tomorrow. She has to be in pediatric oncology at 8am to have her port accessed then she will go to radiation oncology at 9am to have her workup done were they measure, size, mark, etc.- a dry run. She will be sedated for this because it takes a while and needs absolute precision. Please pray about her sedation. Her last experience was not good. They are going to look in to different types of sedation as well as adding a blood pressure drug before that is supposed to counteract negative effects. All of this should take about 2 hours. Once she is set we will go back for seven days for seven treatments. He does not expect many long term effects from the radiation. They will begin her routine cancer screenings sooner than the typical adult, but that applies to being a cancer survivor anyway. He did say the field of radiation used is a predetermined area on her left side. They cannot make adjustments to this. So please if you could- pray that her breast tissues and ovary do not fall into this field because if they do, nothing can be done to prevent damage. It just depends on her unique (God-given) physiology.

And that's about it for now. Plenty we think. Please pray as we enter this new phase of treatment. We have peace about our decision and everything that happened today. We are very comfortable with Dr. Waffle and Dr. Hot Dog. Please pray for Carter, too. He is really feeling the effects of all of this, misses his friends, and is trying to figure out what to think of it all. He really wanted to come with us today, which is actually recommended, but not on days you conference with doctors. We told him he could come next time, thinking that would be next Thursday, not knowing we were going to have to go everyday in between. I'm taking her to radiation myself and having to deal with sedation, so he will have to wait until next week. I know this isn't going to go over well. A huge thanks to Carol who has taken been spending her spring break days with him. We are so appreciative- you were a lifesaver!!