Friday, April 17, 2009

Friday, April 17, 2009

Quote of the day: “See how nature - trees, flowers, grass - grows in silence; see the stars, the moon and the sun, how they move in silence...we need silence to be able to touch souls." ~ Mother Theresa

Peter stayed with Mattie last night, in order to give me a night of sleep. However, I wasn't feeling well on Thursday night, and spent a good portion of it up. Though I talk about my fears and stresses with Mattie's illness, a good part of what I experience I internalize through headaches and stomach pains. Peter and I have both been very worried and concerned over Mattie's pending lung surgery. It is ironic when Mattie first was diagnosed in July 2008, Peter and I were overwhelmed with fear, anxiety, stress, and grief. So much so, that we couldn't sleep, bearly could eat, and we felt our hearts racing. As Mattie's treatment got under way, this level of anxiety changed. Not that we do not have these same fears, but we developed a level of understanding regarding the process toward recovery that was empowering. The ironic part is after nine months of torture, we should be celebrating the end of chemo in about a month. However, this achievement is being clouded over by a major surgery Mattie must undertake in June, a thorocotomy. I have to say Peter and I are right back to where we were psychologically in July. Some of the same anxieties and fears have surfaced which make it impossible to eat, digest food, and sleep. Clearly, having a major surgery like a thorocotomy is overwhelming in and of itself, but keep reading to get the full picture as to why this would be any nightmare for any parent.

I helped Mattie get ready for his clinic visit today. He wasn't happy about going to the hospital, but I told him there would be a cake to celebrate the end of Meg and Laura's (Linda's interns) internship. That motivated him. When we arrived at the hospital and checked into the clinic. Mattie was greeted by Jenny and then Jessie. Soon there after, Peter arrived from work, so that he could attend the doctor consultations we had scheduled for today. Linda brought Meg and Laura to the clinic, and with her she brought a vanilla cake! Mattie was thrilled to be able to eat the cake, and he gave Meg and Laura good-bye gifts. I found these charming figurines of a little boy holding a balloon, and on the balloon is written our key word for the year, "hope." I thought this would make a lovely gift, because the little boy figurine reminded me of Mattie, but I also wanted the figurine to remind Meg and Laura of the importance of instilling hope in the patients they work with as well as in themselves, so that they may continue to have the courage and strength to help others during the most challenging of times. Without hope, we would be completely lost.

Meg, Mattie, and Laura! To put some context to the length of time we have been at the hospital, we have experienced three sets of Childlife interns and keep in mind that an internship is about one semester long.

Mattie spent the afternoon with Jenny and Jessie, creating, having a good time, and even having a physical therapy session with Anna. I am thrilled Anna could come to clinic today, and get Mattie up and moving. Mattie apparently raced against Jessie, and naturally Mattie won! Jenny made Mattie some wonderful gold medals as his prize for winning. Mattie literally walked two whole laps around the entire clinic. Unfortunately we did not get to see this, because we were consulting with doctors about Mattie's case. None the less, we are very lucky to have this amazing support system at the hospital who kept Mattie busy and HAPPY for hours.

Peter and I first met with Dr. Nita Seibel, Head of Pediatric Solid Tumor Protocols - Clinical Investigations Branch at the National Cancer Institute. Dr. Bob introduced us to Dr. Seibel. Not that this really matters, but I think this is worth noting. We have professionals like Nita and Bob in our life who NEVER bill Peter and I for our visits with them. I mention this because we have noticed that some doctors have billed us incredible fees for just chatting with them in the hallway. Careful who you talk to in the hallway of a hospital! For example, I remember asking a psychiatrist a question in the hallway of the PICU in the Fall. Maybe I spoke to her for 10 minutes at the most. Do you want to guess how much she billed us for her 10 minute time? Try $400! Amazing.

We met with Nita today while she was on Georgetown's campus for a conference. We wanted to get some feedback from Nita about Mattie's lung lesions and what course of action she would recommend if the lesions were indeed metastatic cancer (bone cancer that has spread to the lungs). Nita is highly professional, listens carefully, and is a wealth of information. Here is what we learned in summary. Nita explained that we really do not know what we are dealing with in Mattie's lungs unless we do surgery and remove the lesions. However, we do know that bone cancer when it spreads moves to the lungs first. So the current lesion presentation gives every indication to being osteosarcoma in the lungs. However, we will not know for certain until we receive a pathology report on these lesions, post surgery. In addition, the pathology report will also tell us how viable (ie, how alive and active the cancer cells where at the time of removal) these lesions are assuming they are cancerous. If the chemo was effective, we would hope that there would be no viable cancer cells left. Nita also confirmed my thoughts, that if Mattie had a relapse of osteosarcoma, he wouldn't be receiving the chemo drugs he is currently on. There are two reasons for this, the first is that if the cancer comes back, we know that the current regimen isn't effective, and second, some of the drugs such as cisplatin, Mattie could never receive again because of its toxicity to his body. So I suppose, we better pray that other drugs are discovered between now and a relapse. Nita discussed with us some experimental treatment options we could consider if the lesions turn out to have a large percentage of viable cancer cells. One option is to continue to MTP-PE. But if the viability is high, then how effective has MTP been? Another option would be to continue on a different form of chemotherapy. But here is the problem with this, there is NOT much research out there about lung metastasis for osteosarcoma patients. So there is NO protocol, or in essence there is no way to determine how much chemo to give, or when enough is enough. So it truly is pioneer territory. A third option which Nita is investigating for us is a trial which uses Insulin Growth Factor (IGF), which has been implicated in the growth promotion of tumors, therefore blocking IGF from binding to cancer cells could theoretically cause these cells to die off. One thing that is abundantly clear is Mattie is different, because he had four primary tumor sites, not just the typical one. Nita suspects that what generated Mattie's osteosarcoma may be different from other children who have one primary osteo tumor location (but then again, who really knows, there is virtually NO research done on multifocal osteosarcoma).

Nita explained to us the importance of extracting these lesions through a thorocotomy versus through thoroscopic procedures. She also made an excellent case for why it would be important to remove all these lesions at ONE time, rather than removing the two lesions on the right side first for example, and then weeks later perform a second thorocotomy to remove the other two lesions on the left side. I told Nita that it will be hard enough to get Mattie to agree to another surgery, much less two! She agreed. But beyond the psychological ramifications of multiple surgeries, we have a bigger problem. If these are indeed cancerous lesions, and we perform a staged bilateral thorocotomy (meaning do one side first, heal and recover, and then weeks later do the other side), then we are leaving Mattie's body exposed to potentially cancerous lesions for a longer period of time post-chemotherapy. Nita gave us the name of a surgeon at the Mayo clinic who is known for performing simultaneous bilateral thorocotomies (where the incisions would be on Mattie's sides, under his arms, near the ribs and both the left and right lesions would be extracted in one surgery). Our consultation with Nita was very fruitful as always.

After we met with Nita, we then had an hour long surgical consultation with Dr. Alfred Chahine. Dr. Chahine practices at Children's Hospital in DC, and is also the Chief of Pediatric Surgery at Georgetown. Dr. Chahine answered all of our questions and gave us an overview on thoroscopic surgery (which is less invasive and done through video assisted technology) and why this would not be a good match for Mattie. Mattie's lesions are TOO small for video assisted surgical methods, and because of Mattie's aggressive cancer, a trained thoracic surgeon really needs to go in and manually feel both lung lobes for any additional lesions that may not have appeared on the CT scans. So I think Peter and I have safely ruled out thoroscopic surgery for Mattie. Now the question becomes how will the lung surgery be done. We are pursuing one of two ways, either it will be bilateral thorocotomies (which means cutting through the chest walls, under the arms by the ribs), or a sternotomy (in which an incision is made through the sternum, breast bone). Neither sound great to me, but Dr. Chahine explained the advantages of a sternotomy. With the sternotomy you are cutting through bone and not muscle. So believe it or not, it appears easier to recover from a sternotomy than thorocotomies. Thorocotomies are painful because you are cutting through layers of muscle. Either case, Dr. Chahine explained that regardless of the surgery, Mattie would most likely be in the hospital a week to two weeks, and then would need a at least a month to recover at home. Dr. Chahine warned us that this surgery is very painful, even more so than limb salvaging surgery. That was frightening to hear, and during recover Mattie most likely would still be wiped out, in pain, and having limited mobility. This was a reality check for me, because I can see the aggressive physical therapy I had planned for Mattie this summer isn't going to happen right away. Mattie will be unable to put any pressure on his arms for over a month, and right now Mattie occasionally uses a walker when walking. He would not be allowed to do this post surgery. To cut to the chase, Dr. Chahine recommends a sternotomy at this point based on the positioning of the lesions.

Dr. Chahine gave us something else to think about. He explained that such a lung surgery should only be performed if Mattie has no evidence of disease any where else in his body. If between and now and the end of May when we perform the next set of scans, if Mattie develops a tumor somewhere else in his body, then in all reality that tumor must be dealt with first. Meaning if a new primary site in the bone forms the research indicates that this must be dealt with first. So I am not sure what I wish for first. No new tumors? A successful sternotomy? More chemo drugs developed to treat osteosarcoma? Lesions that are non-cancerous? The wish list is endless.

I asked Dr. Chahine several questions about his experience doing these surgeries. He explained that he has done hundreds of thorocotomies on children of all ages, and maybe about 20-30 on osteosarcoma children. His reasoning for this smaller number is that the osteosarcoma population is sparse. We also discussed why it is important to use a pediatric surgeon versus a cardiothoracic surgeon, who most likely has more experience working on adults than children. I then asked Dr. Chahine how hands on he would be post-surgery. I feel for any surgeon who has to deal with us now, because Dr. Bob has spoiled my family. Bob never had a resident work on Mattie post-surgery, everything was done by Bob. However, I realize in the real world this isn't the case, but none the less, I was curious to hear how Dr. Chahine would respond. He handled it well, but I have to say I am frightened. I am not too proud to admit it. This is a very complicated surgery, where so much can go wrong, especially since they must collapse Mattie's lungs in order for them to feel for additional lesions.

Dr. Chahine commended Peter and I on Mattie's blog. I was impressed that he looked at it, and he said he doesn't know where we get the strength or energy to do this. Particularly he couldn't get over how we organize and post photos almost each day. He said that he has photos of his daughter in a box that he is still trying to organize. Here is the thing though, besides taking care of Mattie (which is my number one priority), the blog is also my job. I take this job seriously. I want others to know what is happening in Mattie's life each day, so as to never forget what living with a life threatening illness is all about. I also work hard at painting a picture of what we as a family are struggling with, because osteosarcoma is a disease with profound effects on the family.

After our meeting with Dr. Chahine, Peter and I had lunch in the clinic. Mind you it was 3pm by that time. Getting food down wasn't easy, but we did it. We then said good-bye to Jenny and Jessie who were just fabulous today. I did not worry about Mattie once while he was with them. Mattie's white blood cell count rose to 2000. So he no longer needs to take GSCF (the white blood cell growth factor), however, we have to take him back to clinic on Saturday (wonderful isn't it, considering we may start chemo on Monday!). Mattie's platelet count is low. So we will recheck his blood level tomorrow, but we may have to transfuse him in clinic tomorrow. I do not have access to Jenny and Jessie tomorrow, so I plan on bringing a ton of things with me to keep Mattie occupied during his transfusion. I would have to say the last chemo hit Mattie hard, because this will be his fifth transfusion in a week's time.

When we got home, Mattie wanted to take a stroll in this lovely weather. Though my mind and body did not feel like going, I went. Peter and I enjoyed the fresh air, and Mattie liked the walk. He told me today that for the first time he felt like his old self. When I asked him why? He said because these walks remind him of things we used to do together. While we were walking, Peter and I couldn't help but notice people staring at Mattie. Certainly we are hyper sensitive to this now, but we both made the observation at the same time. I guess living in the PICU shelters me, because in the hospital Mattie is a little boy who happens to have cancer. In the outside world Mattie is cancer, and he happens to be a little boy. I found myself getting mad at these people staring, and though my outrage may be irrational, I think Peter and I are just displaying our natural parental instincts. We took some photos during our walk this afternoon.

Left: Vicki and Mattie in front of an impressive fountain on Virginia Avenue, NW

Right: The World War II memorial

Left: A mother duck with her ducklings in the Washington Tidal Basin. Mattie loved watching the ducklings, and asked me if they reminded me of him and I.

Right: The Washington Monument and the Capitol in the distance.

We would like to thank the Cooper family for a lovely homecooked dinner. Mattie loved the cookies. Thanks for remembering his favorites! We truly appreciate all the support!

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "Thursday’s blog reminded me about how undervalued certain things are: silence, nature, the stars, etc. How we take so many things for granted until we don’t have them and then we realize how essential they all are to our ability to function as people. Vicki, I truly don’t know how you are managing with so little rest and then no place that is without intrusive noise. We have so much noise around us all day in a city, an office, a hospital, that we don’t even realize how disturbing it is; often it takes the truly painful, like construction or leaf blower disturbing the peace of a Sunday morning to remind us of the preciousness of silence. How can you think, pray, reflect if all around you is noise and chaos? One of the things I love about your blog is how it reminds me of the multitude of gifts I have been given (but often take for granted) like good health or waking to birdsong on a weekend morning. I hope that when this treatment is completed, all these “gifts” return to your lives in generous quantities."