Wednesday, June 3, 2009

Wednesday, June 3, 2009

Quote of the day: "There are two ways of meeting difficulties: You alter the difficulties or you alter yourself to meet them." ~ Phyllis Bottome

Just when you think things can't get any worse for us, something else occurs, and sends us spinning. The day started out fine. Mattie seemed somewhat hungry and in good spirits. In fact, Mattie even helped me in the kitchen by making homemade waffles. He was on the counter, next to me pouring ingredients together and mixing them. We had a nice time cooking and eating. I snapped a picture of Mattie on the counter, and you can see he was animated and happy!

However, this good time was very short lived. When Mattie learned that we had to head back to the hospital for a meeting, he wasn't happy. Mattie made getting ready today very challenging for me, and by the time we were headed out the door for the hospital he was complaining of all sorts of pains. He developed the chills and a wild headache. He was shaking and had the goosebumps. When I got to the hospital, instead of waiting for the meeting to take place, I went directly to the clinic and met up with Dr. Gonzalez. Dr. Gonzalez was extremely helpful today. She assisted me in getting Mattie a clinic room and she even changed the linens on the bed herself. She observed Mattie for three hours and monitored his blood pressure and temperature. However, the scary part is he did not have a fever or ANY chills the entire time he was in clinic. While he was being observed, Jenny and Jessie stayed with Mattie so that Peter and I could attend the pre-surgical meeting.

When we entered the room, the team was already there. I would say there were about 15 people in the room including Dr. Alfred Chahine (the surgeon), Dr. Kristen Synder (Mattie's oncologist), Nan (the nurse from pain management), Dr. Keisha Bell (an Intensivitis), Toby (the nurse manager of the PICU), Tricia (one of Mattie's HEM/ONC nurses and the Charge of the PICU today), Katie (one of Mattie's HEM/ONC nurses and a HEM/ONC nurse educator), Linda (our Childlife Specialist), Denise (our Social Worker), Catherine (our Case Manager), Anna (Mattie's physical therapist), Jennifer Chaiken (a PICU nurse educator), Meghan (a HEM/ONC resident), and Amy (a HEM/ONC resident). The team had convened an hour before we showed up to work on the logistics of things and present a united plan. After we arrived the team spent about another hour with us answering our questions and talking about pain management for Mattie's surgery. I was very impressed with the team's willingness to work on these details with us and to address and answer all of our concerns. Dr. Chahine is very gracious with his time and understood our emotional concerns for Mattie. I left the meeting with several things floating in my head thought. One of which is what happens if the epidural (which will be placed into Mattie's back during the surgery) doesn't work and doesn't provide relief for Mattie's pain post surgery? Apparently this could happen. We talked about other pain management options that will be used if the epidural doesn't work. But that alone made me nervous, because the other option is IV narcotics (and Mattie has been taking plenty of those lately). The second issue which I brought up was Mattie's current physical condition, which is weak. I remember when Mattie's buddy, Brandon, had surgery after his chemo was done, that it took Brandon a long time to heal and feel better. This has always plagued me, because Mattie has been on chemo for 10 months and has already gone through two major surgeries, so from my perspective Mattie's body is very compromised. So my question today was does Dr. Chahine expect Mattie's recovery to be HARDER because of his compromised immunity and weakened state than if he was performing this surgery on a child who hasn't gone through chemo? His answer was YES. He agreed that Mattie is in a fragile place, and it is also quite possible because of Mattie's osteopenia, that when the surgery is done some bones will break because of the brittle nature of Mattie's bones right now. So though I left the meeting with the feeling that we indeed had a team working on this, I also left the meeting feeling rather helpless. No wonder I am having a hard time breaking the news to Mattie about his surgery! He is going through hell now, and adding another major surgery on top of his current state could just about send all three of us over the edge, and I don't say this lightly.

Mattie's emotional state now is fragile. On top of his fears and anxieties associated with his illness, it was very evident to Peter and I today that Mattie may be developing the chills and other pains as a way of seeking and receiving pain medications. He is savvy and on some level he knows if he acts a certain way, he will be given certain medications such as demerol or morphine to combat the symptoms. While Peter and I were at the meeting, Jenny, Jessie, and Dr. Gonzalez reported that Mattie was calm and engaged in the movie he was watching. As soon as Peter and I walked in the room over an hour later, he became unglued. He showed all the signs of being very anxious. He was clingy and was very upset that we had left him, despite the fact that he knew where we were. From that moment on he started to become very agitated, said no one was helping him with his chills while we were gone, and demanded medication through his central line. In fact he was screaming! Dr. Gonzalez came in and observed this whole scenario. We all tried to reason with him, but Dr. Gonzalez could see there was no turning back and calming him down. So she rationalized with him. She said she would give him IV morphine for his "pain" but that he had to understand that he couldn't get IV morphine at home. At home, I am allowed to give him morphine orally, which is less concentrated. Once Mattie learned he was getting something through his IV, he calmed down and moved on, and continued to watch a movie as if nothing ever transpired. Of course, Peter and I felt like we were hit by a storm. Another storm! We went out in the hallway and spoke to Dr. Gonzalez. She explained to us that she has seen many of her patients develop dependencies to narcotics while being treated for cancer. She felt that this was what we were seeing today. However, there is not much we can do about this right now, since Mattie will be headed to another surgery soon and will be pumped up with MORE pain medications. However, Dr. Synder (Mattie's doctor) and I discussed the possibility of using Methadone (is a rigorously well-tested medication that is safe and efficacious for the treatment of narcotic withdrawal and dependence) to assist Mattie with this problem once his surgery and recovery are completed. I can't tell you how sad we are today. Not only do Peter and I have a son with cancer, but we have a son who now has mental health issues, including drug dependence. It is all a parent's worse nightmare, and it is happening at the young and innocent age of seven. I always tell my students that under just the right circumstances anyone can develop a mental illness. Mattie's story illustrates this perfectly!

After Mattie received the IV morphine, he felt better. We brought him home, but he has been edgy and clingy all evening. He is not giving Peter or I a second. At the moment, Peter removed me from the room Mattie was in, so that I could get a break, but I can hear Mattie through the door and it is unsettling to listen to. So I am not upbeat tonight, but realistically see that things are going to get much worse before they get better. The scary part is to me we have reached the low of the low. It is funny, Dr. Chahine told Peter and I in the meeting today that there would be NO way Mattie will go through the recovery process from lung surgery without being in any pain. He wanted to warn us, and with that I told him that Peter and I live each day witnessing Mattie's pains, believe me we are experts on seeing a child in pain. I don't wish this upon anyone, it is a special kind of torture that wears on us constantly. However, what other choice do we have? If we want to give Mattie a possible chance for a cure, this is what we have to do, but I now see what Sloan Kettering was talking about (since they advised Peter and I in the fall NOT to treat Mattie's case aggressively). Putting your child through such intensive treatments is harrowing, and of course the real killer is you don't know if it will even be effective.

As we head into Thursday, Dan (the young fellow who is a Georgetown student) will be coming over to play with Mattie. I am hoping this is a good interaction for Mattie. In addition, last week Ann wrote to me and said she wanted to have a sleepover for Mattie this weekend, so that Peter and I could get a break. For many months now, either Peter or I have spent the night with Mattie. We are unable to leave him alone since he is on IV hydration at night. Peter and I rarely have a peaceful moment together, and I think Ann wanted to try to make this happen for us this weekend. I am truly touched by her kindness and love for Mattie, but of course in his current state, I worry. The irony is if Mattie were healthy I wouldn't even conceive of a sleepover, since I feel he is too young. But at this point, anything normalizing and being with other children is healthy and I welcome these moments for him. I feel like Ann lives Mattie's treatment with us, which provides a certain level of trust and comfort to me.

We would like to thank the Ferris family for a wonderful and very generous dinner tonight. It was the bright spot of our day! Thank you for your incredible support!

I would like to end tonight's posting with two messages I received today. The first one is from my friend, Charlie. Charlie wrote, "You are a woman of incredible patience. To spend a whole day playing with representations of something you intensely dislike, that is the definition of a dedicated mother. I know how much you hate bugs and to spend the day with hundreds of fake ones, well, that's definitely love! I am glad Pete was able to come up with a suggestion for getting Mattie outside with his bugs at the end of the day. Having to be an all day playmate is tough, having to spend a beautiful day inside the house just makes it harder. I know these next two weeks leading up to the surgery are going to be hectic but try to catch whatever rest you can; I suspect that post surgery will be even more stressful for the first few days at least and so whatever little extra you can do for yourself will pay dividends in the long run."

The second message is from my friend and fellow SSSAS mom, Tanja. Tanja wrote, "Hats off to you and Peter for your stamina and continued understanding for Mattie. I am sure I would have lost it many times if I were in your shoes. You and Peter continue to amaze me. Both of you are sleep deprived to infinity and beyond and you still manage to keep your cool with Mattie and make important medical decisions. He could not have any better parents. You continue to support him and sacrifice your own needs - especially the need to have adult social interaction. I am also in awe of Mattie. Despite all the treatments and the terrible side effects he is still a tower of strength. No adult could tolerate what he does with so much patience and continued stamina. No matter how bad he feels, it does not take him very long to rebound and be a bundle of endless energy. Although it is stressful for you and Peter, I think Mattie is entitled to his times of frustration and anger. Part of that is that he has no other release of his own stress and anxiety but to lash out at others or to withdraw. These are his coping mechanisms and they work for him! An adult in his situation would scream and complain and ask for drugs to be in lala land just to be able to cope. In my mind Mattie is getting only the minimum amount of medicine to help him deal with the side effects of his illness and medicines - thanks to you and Peter. To the outside world Mattie's behaviors seem like major tantrums but once you know Mattie, you understand that that is his way of dealing with his fears and stressors. While these moments are daunting - to say the least- they are only temporary. Once Mattie has recovered from his surgeries and treatments, he will be much more social and outgoing again. So, stick to your guns and continue to do what you know is best for Mattie no matter what others are saying to the contrary!"