We're Home! (Week 1)

It has been an intense day- to say the least.

We arrived at Brenners without much fanfare and they did her vitals and put on her emla patches (numbing cream) on her arms and port. We waited for about an hour and were told the oncologist was called downstairs for a spinal tap consult. Julia was happily watching Noggin. Then the nurse came out to say she was being sent downstairs for an echocardiogram. My heart just sunk. The two chemo drugs we knew she was getting have limited and mild side effects, but the third drug we were waiting to hear about can cause heart damage. Once again we find out something indirectly through a nurse. This is really frustrating. Cardiology was backed up so they had us wait for the oncologist instead.

He took us back and launched into the treatment protocol they wanted us to approve her for. This is a 25 week course of vincristine, dactinomycin, doxirubicin, and intensive focused radiation (Regimen DD-4A). This protocol is based on a Wilms' tumor study from 2006. We knew there was a possibility of the doxirubicin, but had been told radiation would not be warranted in her case. We were quite overwhelmed by the discussion. The motivation of this protocol is to test the effectiveness of a stronger treatment course on stage 1 anaplasia cells and recurrence. There is a 1 in 4 tumor recurrence rate for her type of tumor. They are testing to see if using the stage 2 & 3 course is more effective on stage 1 cases. We were not expecting this at all. Radiation would be a whole different ballgame. Aside from the side effects and later complications she would also have to be sedated for all the treatments every day for the next 10-14 days. And she has a horrible reaction to short term sedation. They wanted to start this afternoon. We were handed a protocol printout and sent down to echo to get her heart study and make a decision in 30 minutes. A little stressful to say the least. Fortunately Julia did awesome in the echo lab which allowed me 30 minutes to step out of the room, gather my thoughts, pray, post, and make some phone calls. A huge grateful shout-out to Bob (my oncology rep friend), Emily (my peds nurse friend), and Shana (my other nurse friend). Thank you for talking through all my concerns, giving me your hospital insight, and praying with me on the phone.
In the end we decided to hold off on radiation. We still have not received the chromosome pathology back from central pathology. Because of that, the COG has not signed off on their recommendations. We were told that the pathologist at Brenner's happens to be a specialist in Wilms' tumors (God is so good to us!) so we are confident with what he has reported so far. The oncologist showed us the actual slides form pathology. The tumor was only 145 g (0.3 lbs) which is very small. They are usually 1-3 lbs when found. Again nothing had spread and it was only those few anaplasia cells that were 'angry'. The justification for the protocol they were recommending is that the Wilms' cells can be present elsewhere in her abdomen or lungs. We feel confident that the three drugs recommended will also take care of this possibility. The pressure was coming from the protocol enrollment requirements that state radiation must be started by day 14 post-surgery (which is tomorrow).

After praying and talking we went back to the oncologist and said we did not feel comfortable agreeing to radiation at this time. We are still awaiting pathology results that might even reverse the doxirubicin drug addition. If her results warrant this recommendation next week we are willing to discuss it then, but not right now. A week will not make a difference in the long run. Even if we do end up on the 3 drug course today's chemo treatment was only the original 2 drugs- the third does not come in to play until week 4.

I also had him stop just to listen. We have been so happy with the care we have received, the urgency given to her situation, and the doctors and nurses we have encountered BUT the information passing has been frustrating...

• We had to make her anesthesia decision in the hall as we walked down to surgery, 
• we found out she had a definite cancerous tumor by on OR nurse who casually said on the parents' line that she was doing well and was getting her portacath installed (this was our first cancer confirmation),
• we found out it was Wilms' tumor from a surgeon- not an oncologist, when the attending oncologist finally spoke to us it was in generalized terms- no specifics or treatment plans because of pending pathology, 
• we found out she was going to receive this chemo regimen by an nurse in the clinic who called to tell us to come in, 
• we found out about the high power chemo by a nurse telling us as she walked by to head down for an echo, 
• we found out about radiation when being asked to sign a consent form, and we found out about the radiation schedule by being told we were going down now for sedation. 

We have never had the opportunity in this process to sit down with an oncologist and discuss her results and treatment plan in its entirety and it has been frustrating to say the least. We are thankful we did the research we did or we would have never had any idea what questions to even ask.
The oncologist was very understanding and apologetic. I told him again that we had only been in this for 2 weeks and had only been oncology patients for one week. He changed his tune and reassured us that we were making the best decisions for Julia this point. He even offered to hold off on today's chemo until Monday. We decided to go ahead with the chemo as planned. Julia's worst part of the process is getting all the tape and adhesives ripped off and we were not about to make this one for naught. They came in to start the infusion and again the worst for her was having everything peeled off to get to the port access. They used all the sprays and gels, but that stuff really sticks. We are looking into some cloth alternatives for next week. The actual chemo is a 3 syringe process- zofran for nausea, then the clear chemo drug, and finally the golden yellow chemo drug. She did great with the process. And proceeded to wash it all down with a bag of doritos- that's Julia :) She was very happy to be leaving and they actually had an Easter egg hunt for the kids as we walked out. It was nice to leave on a good note.

She is now happily napping in her own bed and feeling good. She has only a few passing waves of nausea, but they were short-lived. They said this course would likely only cause 24 hr nausea at the worst. The oncologist actually 'prescribed' for us to go to DC as planned this weekend to see my parents for Easter. They feel this is the best for her spirit and healing, important for Carter, and perfect timing in her treatment plan. So I am off to use whatever brain cells I have left for packing to leave tomorrow afternoon. We will return on Tuesday morning. Her next appointment is with urology on Wednesday and then back for chemo on Thursday (this will be our 'chemo day', barring any complications).

So our prayer requests for now are...

• that we are in God's will for her treatment
  
• pray for favorable pathology results (still pending)
• for the recommendations of the COG that have still not been decided
  
• Dr. McLean is presenting her case to the tumor board this afternoon to get more input
• He is also reviewing the 2006 study to reassess the best plan for her
• that the chemo drugs infused today are on a successful 'seek and destroy mission'
• for no chemo side effects for her
• smooth travel for all of us
  
• better communication for all those involved in her treatment
• continued good health for all of us
• for all the many patients we saw in clinic today who are climbing mountains much higher than ours- it is a humbling experience to become a part of this family

"Hosanna!! Blessed is He who comes in the name of the Lord!"
We pray you all have a blessed and sacred Easter weekend remembering the sacrifice of our Father and the miracle and joy of Christ's resurrection!