Monday, January 12, 2009

Monday, January 12, 2009

Quote of the day (Thanks Charlie!): Lance Armstrong, the famous cyclist, is quoted as having said, "If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell."

This morning we all over slept and getting to Sloan Kettering by 8:30am, wasn't going to happen. But we weren't too late, we arrived at 9am, after circling and circling to look for the entrance into their parking garage. Parking at Sloan is NOT intuitive at all. Now that Mattie is in a wheelchair and it is freezing out, we felt compelled to drive rather than take a taxi or walk. After spending $32 in parking we are re-evaluating that notion. But by the end of the day, it was well worth having our car to turn to.

Well some of you may remember the nightmare we had during our first Sloan Kettering visit in the Fall. I tried to go into today's visit with an open mind, but who on earth am I kidding. Sloan Kettering and I are just not well suited for each other. It is a factory filled with non-empathetic staff, who are going through the motions and view you as a burden in their day. That may sound harsh, but based on how we were treated it is quite accurate. We spent literally 8 hours today arguing and advocating. I am wiped out tonight. I will try to paint a picture of the day.

When you walk into the 9th floor outpatient pediatric oncology unit, it is like walking into chaos. Literally today hundreds of people must have come through those doors. The waiting areas are super crowded, the child life room (which reminds me of a large warehouse) was overwhelmed with kids, and don't get me started about the whole treatment area. After we checked into the hospital, we waited to be seen by Dr. Meyers (who is heading up the MTP study) so he could examine Mattie. While we waited for him, I took Mattie into the childlife room to work on some crafts. He made a lovely snowflake today. But the childlife people seem distracted and not engaged with the kids. I realize I am super spoiled with Linda at Georgetown!

Once Dr. Meyers saw us, he asked Peter and I if we had any questions about MTP. It was a strange question really because I sensed he did not want to really have a discussion with us, he just wanted us to sign the informed consent, quickly examine Mattie, and move us along. I felt as if we were taking up his precious time. At one point in the meeting he told us that MTP was approved for use in England but not in the US yet. So I asked him why. He asked me if I had enough time so he could discuss this. I told him I did, but did he? He did not really care for my response, nor did I care for his demeanor, so we were just about even with each other! I learned a valuable lesson, which of course I know on some level already, but I did not follow my gut today. First mistake. Never sign an informed consent without getting it ahead of time to read it! To give ourselves credit I blame Sloan for not sending us this form ahead of time to read over, because how on earth can we be expected to read it while Mattie is with us and bouncing around and kicking us? Okay, so after this cold interaction with the doctor, we move onto the next fun zone.... The Outpatient Treatment Bays.

We check into the treatment bay area and are assigned a nurse (who happened to be the only lovely part of the whole experience). Michaela explained to us that all the treatment bays were full and we would have to start the process in the waiting area. Lovely, surrounded by people. Good way to do blood draws. Originally we were told that Monday was just going to be a blood testing day and the actual MTP administration would happen on Tuesday. So we were surprised when we learned that blood and MTP administration were happening today. In fact, Dr. Meyers told us the process would take us 8 hours today. I couldn't grasp why until we started talking with Michaela. Michaela came over and told me she was going to insert an IV line into Mattie's arm. That was the first issue of the day. I said NO way. We purposefully got a double headed central line so Mattie would have no more needles in his life. She explained that an IV line needs to be set up so they can capture blood (from a line which is clean, since no medicine would be administered through this IV line) every hour for the next six hours once the infusion took place. I was determined if they had to take blood that they had to use the central line. Michaela wasn't sure if it was possible to use the central line so she had to call Ava, who is Dr. Meyers' nurse overseeing the experimental drug research at Sloan. Ava then let Michaela know that this wouldn't be possible, but if I really did not want to have an IV placed in Mattie's arm, we could wave out of this part of the study. Sounded fine to me, but before I could make the final decision I needed to know what was being assessed and captured in this blood test each hour, because if it would be beneficial for Mattie, we would then have to get the IV placed in his arm. I asked to see Ava but she was in another building somewhere around town, and she couldn't talk with us. I just felt like I needed concrete answers about this. Michaela did explain to me eventually that the hourly blood checks provide pharmacokinetic information (how the drug is absorbed, distributed, and changed and eliminated by the body). She said this was information that would benefit the study but wouldn't impact or help Mattie. That is all that I needed to hear.

I consider myself someone who deeply values research and the need to obtain sound data in order to investigate a research question, but today, I could care less about the research. I basically told her that I was not interested in the least in helping Sloan collect data. To me having Mattie be pricked with a needle and wait around unnecessarily for 6 hours to have blood drawn in my assessment was NOT in his best interest. Mind you he was very upset that he was stuck in the hospital today, because we originally thought we were headed for a simple blood test and then were planning on going sight seeing.

Michaela was fine with my decision, but then I started to second guess the decision. I kept thinking why on earth would they be taking blood every hour, would Mattie be missing out on something? Then I wondered were they going to be doing these types of blood draws at Georgetown during MTP administrations? I worked myself up so much, that I jumped up and called Dr. Jeff Toretsky. Poor Jeff, I caught him in a meeting and I basically asked him to leave the meeting because I needed to talk with him. Imagine that happening at Sloan? Highly unlikely! Jeff spoke with me and assured me that the blood levels they were measuring were not important for Mattie's treatment. So I felt better hearing this from a medical doctor and also knowing that Georgetown doesn't plan on doing these type of blood measures every hour with MTP administration. But do you see a big problem with all of this? Why couldn't I speak to a doctor at Sloan to ease my concerns, why do I have to call Jeff in DC to get access to medical advice? It only speaks to and illustrates the factory like atmosphere of Sloan.

Okay, so to me the morning already started off badly between our interaction with Dr. Meyers and then this blood draw controversy. I wish I could say it ended here, but it did not. Michaela then tells us that a chest x-ray has been ordered for Mattie. Peter and I asked for what reason. Apparently Sloan needs proof that the central line is placed correctly and that the infusion will occur correctly. At which point I lost it! How on earth do they think he receives chemo at Georgetown? We were smart and brought electronic copies of the thousands of scans and x-rays that have been taken of Mattie, and said they should use those. Several minutes later they came back saying the scans were fine but that it would take 2-3 days to "upload" into their system, and this had to be done before any drug administration. Well I was going to fight this and even considered calling Georgetown to have them send up documentation (because they would have accepted a letter from Georgetown certifying that the central line was indeed working and correctly placed), but I figured by the time I accomplished this, the x-ray would be over. But why on earth didn't they tell us we needed this documentation. So this the third incident. When we got to the radiology department, I went into the x-ray room with Peter and Mattie to help them set up (mind you at Georgetown I get to remain in the room with Mattie the whole time, with my lead suit on!). The technician basically threw me out of the room, and said only one parent could be in there (and apparently in her mind I was dispensable). At which point I told her that I have never interacted with a more insensitive hospital. She later came out and invited me in, but just on principle I wouldn't go in. This was the straw that broke the camel's back. After the x-ray, I went back to the oncology floor and requested to speak with a patient advocate.

All during these times, Peter was working very hard today entertaining Mattie. We both had our hands full. Peter worked non stop on all sorts of activities, while I let lose on almost every staff member possible. I felt like a pit bull today. Later in the afternoon, the patient advocate came to find me and I gave her a mouthful about our entire experience. I then let her know about our first visit in the fall as well. She was mortified. But what I find particularly troubling is that Sloan is considered one of the best cancer institutions in the country. She asked me to give Sloan another try, but I told her forget it. I want the medication today and Thursday, and then if I never see Sloan again in my lifetime, that will be too soon. The patient advocate was lovely though and she promised to address all the issues I mentioned to her. I told her that the way things were handled today were unprofessional, and it seemed like this was the first time Sloan administered MTP, because no one could tell us how the day was going to progress.

Thanks to Linda, we connected with Evan today. Evan is one of the zillion childlife people at Sloan. Linda told Evan that Mattie likes cardboard boxes. So she saved several for him. Mattie, with the help of Peter, made an enormous boxed structure, which he entitled "Air Force One." You can see the stages of its developments below. But literally they hot glue gunned many boxes together and then painted them.

I could tell all the childlife folks today were fascinated by Mattie's box creation and I got the feeling that such individual projects are NOT a usual occurrence in their room. By the way, "Air Force One" came back to the hotel with us tonight! It bearly fit in the trunk.

Well you may be asking yourself, what time did Mattie finally get his MTP infusion? Remember we got to the hospital at 9am. Mattie was not given an infusion bay (or small curtained room) until about 5pm. It was a full day and we were all exhausted by that point. Why the hold up? Well the Sloan group that approves the administration of experimental procedures on patients hadn't completed Mattie's paperwork. So we waited, and waited. I took a picture of Mattie in the infusion bay. The area is VERY small, and only the bed and two chairs fit in the space. There is no door, just a curtain between you and the hallway.

The infusion of MTP was uneventful at the hospital. They premedicated Mattie with Tylenol and Vistrol (some type of antihistamine). We left the hospital at 6:30pm so the process, once it started, was quick. We will return on Thursday for the second round. But unfortunately when we got back to the hotel tonight things went down hill.

We met up with my lifetime friend, Karen. She met us in the lobby of our hotel. When we got in the room, she gave Mattie some gifts and he opened them, but quickly got on the floor and started crawling to the bedroom. I waited a bit, but did not hear him, so I followed him in. At which point he had a meltdown. He was crying hysterically, had the chills, and was shaking. We got him into bed and tried to calm him down, but he was complaining of a massive headache. So I called Dr. Meyers. He told me to give Mattie Tylenol and if things did not get better to come back to the hospital. Mattie is not Tylenol compliant and refused to put anything in his mouth tonight. In fact, he said he was going to vomit. So instead, we resorted to massaging him, and he finally fell asleep. We hope that he wakes up feeling better, but he fell asleep by 8pm.

In addition, we noticed something odd with Mattie's left arm today. Peter was the first one to notice. Mattie is now unable to bend his arm toward his stomach. Instead, his arm looks like a chicken wing, with the arm flailing out so that his left arm looks like the letter L. I did not pay much attention to it today, since I had a host of other fires to put out, but tonight I was so concerned with what I was seeing, guess who I called? I called Dr. Bob. Bob answered and we spoke and then I put Peter on the phone, because I was too talked out from the day and wasn't even coherent at that point. Bob thinks that the prosthetic rotated within his arm, and it needs to be rotated back into place. He suggested we try to do this with pillows tonight and if we aren't successful, he will rotate it back into place when we get back to DC. Bob says this is not uncommon especially while the prosthetic is setting into place. I was relieved that it isn't a major problem, but it is disconcerting to see your child's arm looking like the letter L. Of course I blamed myself for this condition, since Mattie was playing with the blinds in our room last night, pulling the cords up and down. I figured he pulled too hard and this is the result. Fortunately Bob once again eased my concerns.

We had a visit from Goli and John tonight as well. They made us a home cooked meal which was wonderful. Goli you out did yourself, and we loved the chicken, potatoes, beans, and salad! I am also eating your cherries tonight while trying to find the energy to write this blog. Karen, Peter thanks you for the wine and I thank you for my wonderful chocolate and lotion gifts! We are blessed to have wonderful friends in NY who are looking out for us. Team Mattie extends far and wide.

I realize I wrote a lot tonight, and I appreciate you checking in and reading about our long day. I would like to end with two e-mails I received today. The first one is from my friend, Charlie. Charlie wrote, "I know you are there at Sloan Kettering asking for treatment at the place where they said they could not do anything. I hope you and Mattie shock them like a snow storm in July! They need an awakening. One should never give up on a patient who has not given up on themselves!"

The second e-mail is from a fellow SSSAS mom, who I am honored to have the opportunity to get to know. Olivia wrote, "So many times, like so many others, I think of you and am humbled by how small my concerns are in the everyday life. My prayers for strength for you and Peter and my prayers for healing for Mattie continue to find inspiration from Salesian spirituality. The spirit of 'everyday grace' that the words of St. Francis de Sales offer reminds me again and again of you and Peter. Your patience with Mattie, yourselves, the medical community, strangers you've welcomed into your life; having to perform the hundreds of ordinary, repetitive acts of caretaking, each with extraordinary love; the strength you show in the face of such ambiguity of recommendations, confusion of approaches, overload of information; how you keep your eyes on the big picture - love for Mattie and care for his body and spirit - while you must devote your hands to myriad mundane details. These themes speak to me of the power of the Browns and the faith that I pray is being nurtured in you all through all of our prayers - so often I feel that is all I can tangibly, but sincerely, offer you."