Stanford

Warning: this is an account of our Stanford appointment detailing the possible treatments Danny will receive. Emphasis on DETAILED.

Diagnosing cancer is not that hard these days, but boy does it take forever.

 We got the call from Danny's oncologist that there was "activity" on his PET scan in mid-April. As previously described, we freaked out. Fortunately it was the beginning of "birthday" week around here and we tried to stay distracted.  On Lucy's birthday we went in for a consultation with Danny's surgeon, hoping he could do a biopsy right there. Our previous experience with a biopsy was pretty good. The same surgeon had allowed us to come in at closing time and he was able to get tissue through Danny's neck with a large needle. The area had a little local anesthetic and a nurse held an ultra-sound machine to his neck and it was done. This time the Dr. felt his neck and told us that wasn't going to be possible, that there was scar tissue in his neck and the nodes were too small to reach with just a needle. So we scheduled a surgical biopsy and had to wait 10 DAYS for it. Those days dragged by.

Meanwhile we went about looking for second opinions.  Steve researched and, along with the help of a oncologist friend of Luke's, we were able to find a Lymphoma specialist at Standford University that sounded like THE expert on recurrent Hodgkin's Lymphoma.  After getting her office all of Danny's previous medical information we were finally able to meet with her the day before the biopsy.

Our appointment was at 10:30 AM. We had a friend take Lucy to school and dropped the babies off with Lindsay (who would be spelled at noon by Katy who would be helped out at 3 by my mom = bless my babysitters) at 9. The drive to Stanford was crazy. It is about an hour and 15 minute drive, but even that late in the morning it took us two hours with traffic. I had a flu for the previous couple of days and was only barely coming out of it so we were all a bit stressed and miserable on the drive.  It was Steve, Marilyn, Danny and I in the van, but as we called Luke (Danny's older brother) and drove past his exit on 680 he decided to come along too. I was so glad to have loving, clever people who would ask the important questions and hear everything that was necessary. We are lucky to be a team.

The Standford medical facility and cancer center is gorgeous. Danny rushed in to get us checked in and we got to look around a bit. They had a massage chair out where patients/caregivers were getting 15 min massages, a nice woman passed out water bottles in the waiting room, a piano player was playing a Little Mermaid song in the lobby-it felt very welcoming and comforting somehow. We were half an hour late, but heard that Dr. Advani was running 45 minutes late so we stopped stressing. We ended up waiting an hour and a half in the waiting room. Universities amiright?!

After being let in our large team got comfy in our room and Danny hopped in the cute Stanford hospital gown. Most patients would be nervous and pacing, but Danny turned on some rap on his phone and started dancing.  Marilyn and I were hysterical-I wish we'd caught in on camera. We all deal with stress in our own ways right? First we met with Dr. Percival, a Fellow and colleague of Dr. Advani's. She asked us a ton of questions about Danny's previous care, felt him up and then asked if we had any questions. We bombarded her with questions and she kindly answered what she could but told us she'd have to turn over most of them to Dr. Advani.

While we waited for our next meeting Steve went out and purchased $40 with of snacks from the overpriced cafe. It was awesome, we were starved and tired and already overwhelmed and it was exactly what we needed. After guzzling our juices Dr. Advani came in with three associates. She felt Danny's neck, underarm and waist (all lymphnode spots) and chatted for a minute. The  she gave us the low-down on Danny's treatment. Here is my current understanding of a very complicated treatment schedule:

Hodgkin's typically recurs in 10% of patients. She told us our last chemotherapy regimen had been strenuous and we were simply unlucky that it came back. 

He cannot have the chemo regimens we know about/had been expecting because his body has already tolerated as much of those drugs as it can. 

He will start what is referred to as Salvage therapy. (We think it needs a new name). 

Part A: There are three chemo regimen options. Two are Inpatient-he would be in the hospital for 3 days receiving chemo then return home for the next 18 days. This cycle would occur 2-3 times and then he'd get another PET scan to make sure the cancer was gone. The other option is a clinical trial currently starting at Stanford. The trial uses two drugs previous tested on last resort patients. They both work very well, but are being tested together and earlier in someone cancer experience. We received previous studies on them and Luke is investigating:) We would receive the trial at Stanford over two days-but just in their infusion center. The regimen is supposedly much easier on the body, he wouldn't lose his hair and their is no nausea to speak of (a miracle).

Part B: A Stem Cell Transplant. We didn't learn too much about this- but we were surprised to learn it was considered standard care in this circumstance. We will be meeting with the transplate center for all the details. What we did learn is that in Part A they will take some of his blood (and stem cells in it) and freeze it. After Part A and his cancer is gone, he will stay in the hospital for 7-10 days while they give him a serious amount of chemo. As I understand it, chemo drugs kill the fast growing cells in your body. Cancer cells are very fast growing, but so is your bone marrow, so as a result of this treatment his bone marrow will be gone too. Afterwards they inject him with his stem cells and they revive the bone marrow. Bone marrow produces red blood cells so we were told Danny would be very weak after the procedure and probably wouldn't be able to work for six months.  There will be a lot more info on this Part forthcoming. I think we're so scared of it because we don't know much about it yet. 

Part C: Radiation. This may not be necessary. Radiation has so many long term side effects (mostly leukemia) that they try not to do it in these cases unless absolutely necessary.

We didn't have many questions to ask because everything came as such a surprise to us. We went on a walk and out to lunch to try and take it all in.  Once the pathology from the biopsy is back and we have a 100% diagnosis we'll have to tell Dr. Advani our decisions and start thing going pretty quick. In the mean time I'm going to take advantage of this one week of freedom.  On Sunday we're jumping in the car and going to..

DISNEYLAND!PS: if you see Lucy before Sunday morning don't tell her...its a surprise!

Feb 2010 after going into remisison

Yes, a little Disney magic will help us deal with everything don't you think? Danny was worried that I would be disappoint when the literal Disney magic didn't work but I put his mind to rest. I want one last trip when my little family (and some of our "team" members: Karen, Katy and Marilyn) can look back at this as the starting point of this journey. I want one day of serious family fun. Yes, I may cry a little walking down main street (although that's not new:) but I just want to do something together.  We had been planning on going next January when the babies are a bit older but dont need a ticket yet. Now, I'm hoping we can go then and call it a "conclusion" trip. Always better to sandwich life's difficult trials in Disney right?! Stay tuned for biopsy post, pics of Disney magic and Danny in his motorized wheelchair in Fantasyland:)