Saturday, May 23, 2009

Saturday, May 23, 2009

Quote of the day: "Life isn't a matter of milestones but of moments." ~ Rose Fitzgerald Kennedy

Mattie had another difficult Friday night in his fight against osteosarcoma. He was agitated, at times hostile, and had amazing mood swings. He can be hostile one minute, and then about a half an hour later remorseful. I spent some time in the hallway last night as well. I have appreciated the helpful comments from Lauren, a fellow osteo mom, who posted about the aggression and hostility she saw within her own child from a reaction to medication. It is quite a scary commentary, Mattie needs medications to mitigate the pain, and in the midst of this, it compounds other problems. Mattie's mood right now is very taxing.

We are lucky enough to have such wonderful friends who were willing to bring us breakfast, lunch, and provide a playdate this afternoon. However, based on where Mattie is emotionally, we decided not to take any visitors. This is a hard decision, and we so appreciate all of you who volunteer and are reaching out to us. I know you understand when such visits are not possible, but our energy levels are decreasing, and managing Mattie's reactions these days to other people takes its toll out on me and Peter. So we are respecting his decision to be alone, but it certainly can be very isolating for Peter and I. We are trapped in the hospital, but in all reality we experience similar isolation at home. When we are home, Mattie also prefers isolation. He doesn't like leaving the house for the most part, and some days won't tolerate visitors. I am hoping at some point we can claim back some normalcy, but I know it won't be any time soon.

One of Mattie's doctors came in this morning to let me know that Mattie's white blood cell count jumped up, and if this count was indeed accurate we could potentially go home on Sunday. However, the doctor was suspect of this count, and had the nurse redraw blood so that his counts could be reassessed. It turns out that the counts were not accurate, and Mattie's absolute neutrophil count is still zero. So for the time being, we remain in the hospital. However, Mattie continues to receive Morphine around the clock for stomach and mouth pain, so we are in no hurry to leave until some of these issues are resolved.

Mattie's nurse today was Miki. Miki is another supporter of Mattie. In the Fall, Miki helped me design a central line dressing change procedure for Mattie. We learned early on that Mattie was allergic to the standard dressing change materials, so Miki was tasked to find other materials that would work for Mattie. Once she came up with a plan, she had to teach it to me. Miki did an excellent job at that, because Peter and I have been able to keep Mattie's dressing clean and infection free for all these months. In fact, Miki commended us today, because she said most kids develop central line infections throughout their treatment. While Miki was working with Mattie this morning, Mattie was sticking his left leg into her pockets. He pulled out her calendar and within the calendar were some beautiful cut out butterflies. Mattie was intrigued by these butterflies and Miki let Mattie keep two of them.

Mattie had his heart set today on building a lego alligator. So while Mattie was sleeping Peter ran around and bought all green colored legos. This afternoon Peter and Mattie transformed our room into a lego factory. Here are some of the wonderful creations of the day.

Left: Mattie's alligator (not a set, it was designed by Mattie)!

Right: Mattie and his alligator!

Left: Mattie's latest Lego house!

While Mattie was building, my parents and I went for lunch on Georgetown's campus leaving Peter to play with Mattie. The weather was beautiful, and it was lovely to be outside in the fresh air. After lunch, my mom and I sat outside in the rose garden of the hospital, but when we got back to Mattie's room, I could see Mattie was edgy and hostile. When Mattie is like this, he gets snappy, says hurtful things, and also becomes disinterested in the objects around him. Despite Mattie's mood, I could tell Mattie enjoyed his time with Peter today, and I am trying to give them their space to play. But as it is 9:15pm, and I look at the clock and realize Peter and I have about six more hours of playtime and monitoring Mattie, it becomes overwhelming. I may not be doing a very good job at conveying my feelings, but Peter and I feel STUCK in which each day looks the same. We are isolated, tied to living in a hospital, we perform the same daily tasks for Mattie (because he is unable to care for himself and meet his own activities of daily living), try to make things consistent and pleasant to maintain Mattie's safety and emotional stability, and of course as a by product of all this care, we don't have the energy or desire to meet our own needs.

In addition to all the other things we are balancing, Peter and I also have to consider whether we would like Mattie to have two more days of Doxorubicin, a chemo drug, post lung surgery. I have asked Dr. Synder to compare the current treatment protocol Mattie is on the the experimental protocol that Mattie is no longer on (Mattie dropped out of the study in November, after the pathology results from the surgeries). When I saw these two protocols myself, I could see that the amount of chemo between them was quite different.

I guess my question to Dr. Synder was what did Mattie miss on this protocol that would have been beneficial to him? We want no regrets, and I feel everything at this point needs to be evaluated and questioned. What I love about Dr. Synder is she has NO ego. She is willing to investigate our questions and present the information to us, and help us to make intelligent choices. Clearly if the lung surgery loosens up any cancer cells, then having two days of doxorubicin may be very helpful. However, doxorubicin has many negative side effects, such as long term cardiac damage. In addition, I asked how effective was doxorubicin for Mattie anyway? It did not enhance his level of necrosis in his bone tumors at the time of surgery. But despite this fact, I still feel Peter and I have to seriously consider this. So another thing to add to our list!

After my parents left tonight, I had the opportunity to talk with a dad of a boy who has cancer in the PICU. This family is having their own challenges, and we commiserated. Though the cancers we are dealing with are like night and day, one thing is for certain, we long for the days when our children were healthy, and we so wish we had the typical parenting issues to contend with. We are instead losing out on the typical highs and lows parents have when they raise their children. For us, our decisions each day have ramification on our children's survival, and I can't quite describe how daunting it is to know that you are fighting a disease where you just don't know what the outcome will be.

The unknown is frightening, scary, and at times unsettling. I don't wish this feeling on anyone. While I am typing tonight, Ellen, Mattie's wonderful HEM/ONC nurse, is playing on the computer with him. He has sucked Ellen into his games and stories. In fact, Mattie even showed Ellen his video clip of when he, Brandon, and Katie acted out the three little pigs. We all got a chuckle out of that. I have no idea what tonight holds, but I hope things lighten up for us.

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "I just sit here and think how unfair it is that on top of having to fight this horrible disease with its devastating effects, you have to deal with all the emotional upheavals caused by the side effects of the drugs. I know that you have mixed feelings about coming to the end of the chemotherapy but with all the horrible side effects this time (stomach pain, anxiety, angry moods, frustration, irritability, etc) and the usual neutropenia, I have to regard the fact that this was the last round of these drugs as positive. It appears that the effects of the drugs are cumulative and that while the intent is that they will clear Mattie's system within a certain number of hours, somehow he becomes increasingly sensitized to them. Peter, you are a hero for managing to get up and go find pasta late at night as exhausted as you were; I am glad you found what was needed and made it back safely. I know you must feel terrible when you are "rejected" and thrown out of the room by Mattie but this is like "The Exorcist", your child has been hijacked by the drugs and the disease and what comes out of his mouth has very little of Mattie in it. He is as much in the grip of it as you are, and likely as confused and unhappy about it as well. I hope this horrible, erratic phase of the journey to wellness ends soon and that you move onto a more even and calm road soon."

Friday, May 22, 2009

Friday, May 22, 2009

Quote of the day: "Endurance is one of the most difficult disciplines, but it is to the one who endures that the final victory comes." ~ Buddha

Thursday night felt like Peter and I were riding a roller coaster, and for those of you who know me, I don't like roller coasters either literally or figuratively. Mattie had intense highs and lows last night. I have noticed, as has Linda, that Mattie is VERY bored in the hospital now. There is literally no activity he can do that captures his attention. This alone agitates him, and he has now announced to me that he doesn't want his friends visiting him in the hospital anymore. He wants playdates but doesn't feel comfortable with them in the hospital. That was a new pronouncement, which saddens me, but I can respect that. Mattie began the night agitated, not knowing what he wanted to do to occupy his time. He kept saying, "I want to do something." But there was nothing we could come up with that interested him. In addition, Mattie became hostile and aggressive 15 minutes after receiving Morphine last night. During which time, he threw me out of his room. He only wanted to be with Peter. After hearing him whining and screaming for me to leave, I accommodated him. I spent about an hour outside the room, and ran into a lot of staff in the hallway. I had my feet up on a bench and was working on the computer. A doctor in the unit, who doesn't know me, came up to me and said, "don't you work here?" I guess I looked like I was making myself at home with my feet up. I looked at him, and I said I practically feel like I work here, but that my son was in the PICU and that I have been at Georgetown for almost a year now. He knew of Mattie, it seems like everyone at Georgetown knows Mattie!

After I was dismissed from Mattie's room, Peter called me and said I was requested to come back, and then Mattie threw Peter out of the room. We finally settled on an activity that finally caught Mattie's attention, which was to blow up rubber exam gloves. He thought that was a riot. I called Peter back to the room to help me blow up these gloves. This took on a life of its own. We even got Erin, Mattie's wonderful HEM/ONC nurse involved. I think Peter must have blown up at least 20 gloves. Mattie started to make a composition out of the gloves in his wheelchair, and I thought it was so creative, I took pictures of it.

Left: Mattie with his glove balloons, or has he calls them, his "turkeys!"

Right: The turkey composition in a wheelchair!

Left: A close up of the turkeys!

In addition to this artistic creation, we all got into a joking kind of mood. We knew the charge nurse of the PICU last night. It was Ashley. Ashley is a PICU nurse and a Boston College (BC) graduate. We relate to her well because she is from Boston and she and I have BC in common. She is also a lovely and warm individual. So we rang Mattie's call bell last night and told Ashley we needed Erin's help (mind you Erin was already in Mattie's room). Well of course Ashley couldn't track Erin down, so when she came to our room to help us and give us this news, she was surprised to see Erin. We surprised Ashley with a bed full of "turkeys!" Ashley hammed it up and acted surprised and then gave Mattie purple gloves to add to his artistic turkey composition. Ashley and Erin then called other nurses into Mattie's room to check out the turkeys. Mattie was loving the attention and for a moment came out of his shell. But after this point, the night went downhill and very quickly.

Peter was tired and it was 1am, so I told him to lie down since he was going to work on Friday morning. At around 1:15am, Mattie started in on me. He was hungry and with that became hysterical. He wanted spaghetti with tomato sauce. However, I did not have any pasta on hand because Mattie hasn't been eating for days. I tried reasoning with him and coming up with different ideas of things to eat. Nothing interested him, and instead he was melting down about the fact that he was starving and was going to vomit if I did not comply with his demands. He worked himself up so, and clearly Peter couldn't sleep with this chaos. Peter jumped up, grabbed his car keys and went on a hunt for pasta to quiet Mattie down. The scary part about all of this is Peter was very tired and should have been resting and NOT driving. Peter tells me that in search for pasta he almost hit two deer on the road. The tension of Mattie losing it, Peter driving around at 1 something in the morning, was just about too much to handle. When Peter got back, I fed Mattie the pasta (nothing like pasta in a can, but apparently this is the only thing he will eat now, Chef Boyardee). He did eat a little of it, but then of course complained that his stomach bothered him. At 3am, I gave up, we gave Mattie more morphine and he finally went to bed.

Mattie had trouble getting up this morning. In fact, Peter left for work and said good-bye to me, and I couldn't move from the chair I was sleeping in. Tricia, Mattie's HEM/ONC nurse today, came in at around 9am, and I was so disoriented. I jumped out of my chair, and slowly started coming to consciousness and eventually took a shower. After I showered, Tricia and I were on a mission to wake Mattie to give him Tylenol. Mattie needed a platelet transfusion today. He had a red blood cell transfusion yesterday, and I was unable to give him tylenol as a premed yesterday. But since Mattie typically gets a platelet transfusion reaction, it was imperative he get tylenol today. Thank God, Mattie complied to take it and then went back to sleep. While Mattie was sleeping, Tricia and I had a chance to chat. I am deeply fond of Tricia. She is a talented and thorough nurse, and she puts her heart into the work she does. She told me she reads Mattie's blog and it is important for her to know how Mattie is doing each day. She knew that Mattie was having a difficult week, and for me it was a great feeling that Tricia knew about how we were all feeling this week, without me having to update her. She just knew, because she is invested in Mattie's wellness. At one point Tricia and I were chatting today, and we both landed up in tears, because she was telling me she doesn't know how I do what I do, and in comparison to me, she has nothing to complain about in her life. I found this very touching and human.

I also had a visit today from Katie, another fabulous HEM/ONC nurse, who is a big supporter of Mattie. Katie came in to chat, lend her support, and some how I sensed she was telling me, I am not alone, though I have felt this way this week. What do I say about these nurses?! They continue to amaze me with their care, concern, and skills.

It was a busy morning of visitors. Jey, Mattie's hospital big buddy, came by and brought him a soccer ball. Jey wrote "Mattie Bear" on the ball. It is very touching how Jey keeps track of Mattie and how he is doing. While Jey came by, I was already chatting with an endocrinologist from the hospital. She came to discuss Mattie's bone density scan results with me. She let me know that Mattie has osteopenia (Mattie scored a z-score of -1.7, which is a standard score. This score compares Mattie to a norm group. The average score is zero, and therefore Mattie is almost two standard deviations below the norm). Osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis. Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are. If your BMD is low compared to normal peak BMD, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop BMD that is very low compared to normal, known as osteoporosis. In addition, Mattie has a vitamin D deficiency. So from my perspective all of this may help explain why Mattie has muscle and bone pains, and has needed to have body parts wrapped up. It also explains to me why he moves gingerly. So Mattie will need to take about 1400mg of calcium, along with 400units of Vitamin D per day. The endocrinologist feels this problem won't resolve itself quickly and Mattie will need to be followed and given bone density scans once a year. Lovely! Another thing to add to the mix.

After I met with the endocrinologist, the medical resident came in to let me know that Mattie tested positive in his blood for Helicobacter pylori (H. pylori). H. Pylori is a type of bacteria. Researchers believe that H. pylori is responsible for the majority of peptic ulcers. H. pylori weakens the protective mucous coating of the stomach and duodenum, which allows acid to get through to the sensitive lining beneath. Both the acid and the bacteria irritate the lining and cause a sore, or ulcer. So in essence it appears that Mattie may have an ulcer. They are going to do more extensive testing on Mattie to get down to the bottom of this. I am happy that the GI folks at the hospital are on top of this (thanks Lauren, a fellow Osteo mom, I am in total agreement with you that this needed to be addressed!).

I am not sure why I felt happier today, but learning that there are medical reasons for Mattie's pain helped me tremendously. Because I guess I feel these organic issues can be addressed much easier that pain that is a result of fear and anxiety. I am not saying that Mattie isn't dealing with the after math of multiple traumas and anxieties, but I feel that when Mattie reports physical pain, we can't ignore it. So Mattie continues to be on Morphine today for the ulcer and mucositis.

I also connected with Dr. Peters today, the head of the microbiology labs at Georgetown. He let me know that one of Mattie's cultures showed Staphylococcus hominis. This is a coagulase-negative member of the bacterial genus Staphylococcus, consisting of Gram positive, spherical cells in clusters. It occurs very commonly as a harmless commensal on human and animal skin. However, like many other coagulase-negative staphylococci, S. hominis may occasionally cause infection in patients whose immune system is compromised, for example by chemotherapy or predisposing illness. Because we are unable to determine whether Mattie's line is infected truly or whether this is a contaminate, the doctors are continuing to give Mattie antibiotics to play it safe. However, he is on a milder antibiotic now, and he is no longer taking Vancomycin.

I also had a visit from Dr. Biel, Mattie's psychiatrist. He came to clarify his position, and I know Dr. Shad spoke to him about his treatment toward me. Though at times my personality can clash with other professionals, I am always willing to work with someone if I think he or she has Mattie's best interest at heart. Dr. Biel says he wants to work with us and wants to coordinate care with Jen (the educational and behavioral management consultant) and her clinical psychologist colleague. So I shall see how this works for us. But I feel after 10 months of working on all these issues, I know immediately when something is going to be productive and worthwhile pursuing and I have no trouble terminating a plan that I perceive ineffective.

Dr. Synder, Mattie's oncologist, came up to see us today too. Are you getting a feeling for how busy our morning was?! Dr. Synder spoke to Peter and I about Mattie's ulcer, central line infection, and osteopenia. In our discussion we talked about the importance of addressing the big elephant in the room with Mattie. Which is his lung surgery. We all think that Mattie is more clued in than we think. He has certainly heard people talk about the surgery in front of us. In addition, Peter talked about the upcoming scans in June. Peter is trying to prepare me for the possibility that another primary bone tumor could be revealed in the scans. If this happens then the lung surgery would be a moot point. Not that Mattie's prognosis is good as it currently stands, but if another tumor arises now, then in a way this changes everything. Unlike Peter, I am in complete denial about this possibility. I am not able to process this at all, and frankly it is too overwhelming for me to even think about right now.

I am happy that Peter joined us at the hospital this afternoon. He brought us lunch and I have so appreciated his support with Mattie this week. It was very much needed. Later this afternoon, my parents came to visit Mattie. They played with him for a while and built Legos and created stories around the Legos. While they were playing, I literally went side ways, and fell asleep for an hour. In fact, there could have been a fire in the room, and I would have slept right through it.

So it is now 11pm, and Mattie is VERY much awake. He feels like he wants to eat, but he is having trouble in that department. None the less, he is at least attempting to eat now. So on some level he must be feeling better. Mattie is still severely neutropenic, and it is my understanding that we will be here through part of next week.

We want to thank the Coker family for a wonderful and tasty dinner. Carolyn, thank you for my favorite salad from the Cheesecake Factory, and for the beautiful strawberries and chocolate cake! We appreciate your constant support. With the fact that Mattie slept most of the day, tonight is turning out to be hellish. I have been thrown out of the room again, called everything in the book, and I left Mattie with Peter until I can regroup. Living with someone who has intense mood swings can impact your own mood greatly!

I would like to end tonight's posting with two messages. The first message if from my friend Charlie. Charlie wrote, "Thank goodness it is Friday and I hope this horrible week comes quickly to a close for you and that next week finds Mattie feeling and responding better. Your exhaustion comes through so clearly; I don't know how you found the energy to go shopping for toys yesterday. Your determination simply amazes me. As for the doctors, all I can say is that like any other group of people, some of them are truly oblivious to what and who are around them. It was inappropriate and insensitive of them to discuss Mattie's upcoming surgery in front of him without discussing it with you first and good for you for chasing them out of his room. They remind me of the people who walk around with a phone in their ears, discussing all sorts of personal information and acting as though they are surrounded by an invisible shield that suppresses the sound while all the time the rest of us are wincing at the personal conversations taking place where anyone can hear. Anyway, maybe your actions will be a wake up call for them! I hope it turns out that Mattie does not have a central line infection, getting off the antibiotics might be helpful with his stomach problems too! If that is the case and he doesn't have an infection you might want to keep that in mind going forward and request a second culture anytime the the hospital suggests Mattie has any kind of infection to be treated. Somehow this reminds me of the other infection Mattie really did not have. We will light Shabbos candles tonight and pray for Mattie to be relieved of his pain and for you to get some much needed rest."

The second message is from my dear friend, Lorraine. Lorraine wrote, "I was so glad to have bumped into you and your Mom, to get the chance to chat the way we did, and to see you both looking so well compared to the horrific way this never ending week has gone. It was clearly meant to be to meet you, and we could not have planned the timing better. But the good feelings end quickly when I read about the side effects of the morphine on Mattie -- don't recall the aggressiveness before but I'm thinking that now the morphine is building up in his tiny system and wham, something has to give! In some ways your feelings of sitting in the childlife room tossed out because of the morphine reaction reminded me of what it was like to see my Mom treat my Dad when dementia finally hit her ... and how caregivers feel when their loved ones are unrecognizable when Alzheimer's strikes. Of course you don't need anyone to tell you about caregiving! In your wildest dreams, who would have imagined that your dissertation on caregiving would have later grown so wide to encompass caregiving for a child with cancer. It is just such a cruel fate to endure -- all the emotional hurts on top of the physical pain and illness, not just all these very complicated emotional effects that Mattie is dealing with but the emotional "roller coaster" you have no choice but to endure as Mattie experiences all of these mood and behavioral effects -- that are clearly the result of side effects of powerful drugs and all the pain and fear he is dealing with. What a tall order on Mattie, you, and Pete. So, by comparison the impact on me is nothing but I must thank you for appreciating and noting what is true: Mattie's illness has hit me very hard. I feel so very sad for all of you, can't believe this is how your life is going right now, feel rather helpless as a friend, but mostly just so very sorry for the incredible amount of pain and suffering Mattie is going through. He is just such a special little boy and this disease has been very cruel. Still, somehow you are managing and looking wonderful. G-d knows how but you must be blessed with something magical Vicki, something that is contagious to those around you, to see you shine amidst the very worst of times. Can you imagine what you will accomplish when the good times finally roll around? They have to ... right now you are stuck in a time bubble, where nothing seems to be changing, but there has got to come a time, when something better is ahead."

Thursday, May 21, 2009

Thursday, May 21, 2009

Quote of the day: "A mother's arms are made of tenderness and children sleep soundly in them." ~ Victor Hugo

On Wednesday and Thursday night, we have been lucky enough to have Erin, a fantastic HEM/ONC nurse, working with Mattie. Erin is a perfect match for Mattie in his battle against Osteosarcoma, because she is very calming, soft spoken, and is able to match Mattie's mood. In fact, Mattie told Erin tonight that he loved her. I am very fond of Erin, because she was the nurse back in August who taught me how to change Mattie's central line dressing and also maintain his lines. Our days have been so stressful this week, that having Erin at night has been SO appreciated.

We all had a chuckle last night (which we needed!). Erin brought in a syringe filled with melatonin. This is the natural hormone that Mattie's psychiatrist wanted him to try to help regulate his sleep-wake cycle. Well the hospital does not have a liquid version of this, so Erin had to crush up the pills and put them in water. By the time this concoction got in front of Mattie, it looked like cement. He refused to take it because he thought it would clog up his stomach like cement. I give him a gold star for attempting to taste it. Peter and I tasted it too, and we all agreed there was NO way this medication could go down without making us sick. We have been laughing about this cement medication all day. We haven't lost our sense of humor, which is a good sign.

Mattie did sleep throughout the night, other than getting up to go to the bathroom. At around 6:30am, Mattie woke up in pain, and Erin gave him Morphine. Mattie then slept for several more hours. Peter worked from the hospital today. Having Peter present made the day MUCH better for all of us. Mattie had several difficult times today, but with both of us around, it helped balance the load, and I truly believe Mattie found great comfort in having Peter with us.

Peter contacted Dr. Peters today. Some of you may remember that he is the head of the microbiology labs at Georgetown. Dr. Peters helped us before when the doctors thought Mattie had VRE, a contagious infection. Dr. Peters told us we could call upon him for his assistance any time. Peter and I have been very suspect regarding Mattie's central line infection. We feel he doesn't have one, and Peter discussed our concerns with Dr. Peters today. Dr. Peters examined Mattie's cultures personally, and we will know something definitively tomorrow, but Dr. Peters suspects that Mattie doesn't have a line infection. Instead he thinks that the sample was contaminated during the collection procedure. We want to get to the bottom of this because if Mattie doesn't need Vancomycin, we would like him off of it.

Ann came to visit with us today. She gave me several wonderful items, such as a CD of photos from Mattie's walk that were taken by Jan Holt (a SSSAS mom). Peter and I are going to find a way to post these pictures somehow, because these are very well done. In addition, Mattie's kindergarten teacher video taped the ceremony at the walk and other special moments at the walk. Thank you Leslie! We so appreciate the pictures and video, and we are thrilled that the energy of this event was documented and captured. Ann brought us a wonderful lunch and while Mattie was sleeping, Peter and I went outside and enjoyed the fresh air and lunch. It is funny how you take your everyday freedoms for granted until you don't have them! As we were finishing lunch, Ann text messaged me and said Mattie was up and calling for me. So Peter and I packed up quickly and headed back to the PICU.

When we arrived, we could hear Mattie crying, and Mattie's wonderful nurse, Katie, was already getting Morphine together in a syringe to give to Mattie. It was determined today that Mattie does indeed have mucositis (a painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer). Peter and I sat with Mattie until he calmed down, and Ann took a few pictures of the three of us, because it seemed like a tender moment for us. In the midst of trying to calm Mattie down and give him Morphine, two doctors walked into the room. You are going to love this! These doctors are part of the pain management team and they came to discuss Mattie's lung surgery with us and how Mattie's pain will be managed. They opened their mouths and began talking about the surgery in front of Mattie, and before they knew it, I gave them their walking papers. There was NO way hearing about the lung surgery would have been a good thing for Mattie at that moment. He was already highly agitated and anxious. I was surprised they couldn't assess that for themselves. But I am beginning to see that the medical community underestimates the cognitive ability of the children they treat. Because these patients are young and tiny, doesn't mean they are not perceptive, bright, and clued in!

After Mattie received Morphine he wanted to build something out of Legos. But we had no Legos to do this with. So he sent me out shopping for Legos, and Peter and Mattie took a nap while I was gone. When I tell you that getting into a car, driving to Target, and purchasing Legos took every ounce of energy I had to give, I am not kidding. I certainly could have tasked someone to do this, but I needed to see the Lego sets myself, because Mattie has quite an extensive collection by now. It was a strange feeling leaving the hospital and going shopping in Alexandria. Alexandria is where Mattie's schools are located. Some how I don't like mixing my worlds. I felt like a mess today, was dressed in one of my hospital uniforms (as I call my hospital clothes), and somehow when I am in this frame of mind, I have trouble dealing with the outside world. I am sure that sounds strange.

When I arrived back at the hospital, Mattie heard me enter his room, even though he was sleeping. He was excited to see what I bought him, and he and Peter started right in on a Lego set. While they began this process, my parents arrived and my dad stayed to play with Peter and Mattie. It was a hard day though because Mattie wouldn't allow Jenny or Jessie (his art therapists) into his life today. This is so reminiscent of the Fall, post surgery, where Mattie was clingy and wouldn't allow others into his world. My mom and I decided to leave the PICU and have tea together. On our way out, we met up with Dr. Shad and Jenny. Dr. Shad is the director of the pediatric HEM/ONC practice, and I told her how upset I was yesterday with the lack of care and concern with regard to Mattie's mental state. Dr. Shad heard my issues, and promised me that they would be addressed.

My mom and I went on campus to get tea, and I bumped into my good friend, Lorraine. Lorraine came on campus for a medical appointment and she wasn't feeling well, so she did not want to actually come and visit us. However, we had a chance to catch up outside together and we chatted for several hours. While we were all sitting in the hospital rose garden, we met up with many hospital staff members who were cutting through the garden during the shift change. Debbi our sedation nurse chatted with us for a while, and she shared her insights with me as to why Mattie may be having some trouble now as he has hit his end of treatment. One thing is clear though, there are many things that must be processed with Mattie, his illness, the fact that he is still disabled, and his anger around all these things, and of course we need to start discussing Mattie's future. Mattie has been so involved with living in the hospital for the past 10 months, that now that this is over, perhaps on some level he is wondering what is next? Clearly, I would imagine he is wondering if this is over why he still can't walk and he doesn't feel well? After all the treatment is supposed to make him better! In either case, we enjoyed chatting with Debbi, and my mom and I were happy that we had a chance to visit with Lorraine. Lorraine has known Mattie since the second day of his life, when she visited me in the hospital after Mattie's birth, and Mattie's illness has hit her hard.

We want to thank the Keefe family for a wonderful dinner from Papa Razzi. We so appreciate the support and your generosity.

Tonight is turning out to be very interesting and challenging. We are noticing a level of hostility and aggression about 15 minutes after Mattie takes Morphine now. It is simply nasty to experience. Peter gave me a heads up about this tonight, since he was the recipient of it this afternoon. Sure enough, after Mattie received Morphine tonight, he started picking a fight first with Peter and then with me. In fact, he asked me to leave the room, because he only wanted to be with Peter. So right now I am sitting in the childlife playroom typing the blog. All of this is just SO hard to deal with, and I know he needs the pain medication, but the side effects are almost as bad as the actual pain itself. On Friday, Peter heads back to work, so it should be an interesting day for me. Especially since Mattie is not open to letting others in his life at the moment. Will this week ever end?!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What an awful day on Wednesday. It certainly seems like this one is going to win the "week from hell award." I think your list of top ten issues impacting Mattie is right on; maybe it would have made more impact on Dr Biel if you had offered it up Letterman style. Sometimes I despair when I hear what people go through with some of our medical personnel. I know you were frustrated and insulted when he offered the list of "helpers" with behavior modification qualifications but you may have found a gem in the pile of otherwise not very useful names. Oftentimes things turn out this way; people offer up something one way and it turns out to be useful in another. I think you and Pete made a really good decision to both stick with Mattie right now; it sounds as though between your mutual exhaustion and Mattie's pain and anxiety that trading off/splitting duties is the only way to cope at all with this situation. I hope they can get to the reason for Mattie's pain and address it quickly; as you know unrelieved pain is exhausting and debilitating for both the patient and the caretakers. Mattie, like you and Pete, doesn't have much in the way of reserves right now; all I can say is that you and Peter are amazing, wonderful parents and those of us who see what you are going through will continue to support you and pray for you."

Wednesday, May 20, 2009

Wednesday, May 20, 2009



Quote of the day: "Service isn't a big thing. It's a million little things." ~ Anonymous


Peter told me that Mattie fell asleep earlier than usual (1am!) because he was on Demerol. If you recall, he was given Demerol to counteract the negative reaction he had to MTP-PE. However, Mattie was up several times during the night to go to the bathroom, and then at 7am he announced he was up for the day. So Mattie did not get much sleep on Tuesday night. Mattie wanted to go to the playroom at 7am, but it wasn’t open yet, and this is where the first sign of agitation began for the day. I wish I could say things eventually got better but apparently we are destined to have the week from hell. You may say that is putting it strongly, but in my opinion, hell is the most appropriate and nicest way to describe it! Certainly caring for someone with a physical illness is agonizing and wearing, but compound that issue with a person also experiencing mental health issues and it is absolutely harrowing and overwhelming.


Dr. Bob came by to check out Mattie's arms and legs at 8am. Mattie was actually up for the exam, but unlike his usual greeting of Dr. Bob, Mattie was agitated, and Peter tells me that Mattie's leg was flailing and hit Bob's eyeglasses. I am glad I wasn't around to witness this!


Peter called me a couple of times this morning while I was home to update me on the terrible moods he was dealing with. I was scheduled to arrive at the hospital this morning to relieve Peter so he could go to work, but I wasn't feeling well. Tuesday night I had an intense migraine and with that felt sick to my stomach. I just couldn't pull myself out of bed this morning based on how I was feeling, so Peter did not go to work today. Mattie was in a fragile state and really needed both of us around!

I arrived at the hospital at 11am, and Peter, Linda, and I took Mattie for his dexascan, or bone density scan. I have been so protected by the PICU and the staff here, that I forgot what the rest of Georgetown is like, which can be surly and attitudinal. This was the main reason Peter and I changed hospital and doctor affiliations years ago. Clearly the bone density scan folks, who are located within the OB/GYN department at Georgetown are NOT used to working with children. Ironic, no? These folks help pregnant women who are going to have babies, but they don't have the foggiest clue how to actually handle children! That just made me chuckle! I also am very sensitive about being around pregnant woman right now. This is my own issue to work through, but to me having a baby is associated with a great deal of sadness and pain. So being in a waiting room with all these pregnant women made me additionally edgy, and I did not need any help today. When I registered Mattie for the scan, the staff person I dealt with was snappy and down right mean. She did not want to take us because I did not bring my insurance card with me. I brought everything else such as the package of information I had to fill out and the script from the doctor. I explained to this woman that we were inpatient and all of Mattie's insurance information is in their computer system. She was disgusted with me, because I made her do an additional step to the check in process. Suffice it to say, we were equally disgusted with each other. Even Linda did not care for how we were being treated.

Poor Mattie had a time of it on this bone scan machine. It literally seemed like it took forever, and Mattie had to lie completely still and straight for minutes. At one point he was crying from the pain of holding his legs and arms so straight. All this crying this week is so overwhelming to hear. After the scan was over, we headed back to the PICU and Linda called ahead and warned Mattie's nurse that he would need morphine for his pain. Thank God for Linda! Always looking out for us.


When we arrived at the PICU, I ran into Mattie's psychiatrist, Dr. Biel. Peter had paged him earlier when Mattie was having an anxiety episode. I suggested that Peter page Dr. Biel, because I think it is important for him to experience one of these episodes for himself. Dr. Biel spoke to me about his concern for caring for Mattie by ourselves at home. He feels that Mattie is highly symptomatic and we will need help. I just listened, because I was thinking that he was going to strategize a plan to help in some way, whether it would be through out patient therapy, tweaking medications, etc. To my amazement, instead, he pulls out a piece of paper with seven names on it. He told me to call these individuals and they would help me with the in home management of Mattie's behavior. I asked who these folks were and he said they were therapists trained in behavioral modification. He proceeded to say that they will help teach me how to get Mattie to comply and take his medications and he said that they will serve as babysitters too, to give me a break. I am not sure which of his statements bothered me more, that trained professionals are going to serve as babysitters or that I MYSELF need training on how to give Mattie medication. Peter and I have developed our own strategies over the last 10 months, and I have been Mattie's mother for 7 years. I frankly do not think I need training, thank you very much! I was so incensed and I told him as much. I also said no good therapist in their right mind is going to perform behavioral management techniques with Mattie until his mood is stabilized, and in my opinion that is his job. So I felt like I had reached an impasse.

Dr. Synder, Mattie's oncologist came by to visit with me, because she understands Mattie is having a hard time, and therefore so are Peter and I. Dr. Synder listened to my concerns, and also told me that any one of Mattie's issues was overwhelming alone, but compound them altogether, and it is extremely challenging. Here are the issues at a glance to give you a feeling for what we are dealing with: 1) Mattie is severely neutropenic (with an absolute neutrophil count of zero - and therefore will NOT be released from the hospital until his counts rise), 2) Mattie has a central line infection in which he needs vancomycin to treat it, 3) Mattie has intense stomach pain, 4) Mattie's knee and ankle are bothering him, 5) Mattie is dealing with intense anxiety and fear, 6) sleep deprivation, 7) potassium levels are very low and we continue to give him boluses of potassium (potassium is critical to cardiac muscle function), 8) a low hemoglobin level and will need a transfusion on Thursday, 9) he is non-compliant with taking oral medication, and 10) Mattie is clingy and wants constant attention. I am sure there are other issues I am overlooking, but you get the picture.

We want to thank Ellen for bringing Peter and I a wonderful lunch today. I actually went outside and had lunch with Ellen for a little while, until she had to leave to pick Charlotte up from school. We really appreciated her support today. I also had the wonderful pleasure of seeing Brandon, his mom, Toni, and his sister, Ashley today. What a lovely family and I am so happy that Brandon got to see Mattie for a short time too.

Despite my irritation at the referral list that Dr. Biel gave me, I did start calling some of the professionals to see what help they could offer us. The first person on the list, I called, but she never called back and I wasn't impressed with her voice mail message. Funny how you can tell a lot about a person just from their voice mail message. You can instantly tell whether a person seems warm and inviting to talk with (a rather important quality in a therapist I think!). So I just kept proceeding down the list until I connected with a live person. I had the opportunity to connect with a professional named Jen. Jen is a special education teacher by training, but also works on developing in home management plans for children. She works with a colleague who is a clinical psychologist. Jen was easy to talk with, and listened. She also agreed to come to the hospital today to meet briefly with Peter and I. When we met with Jen, Denise (our social worker) came by and joined in on the meeting. It was very important that Denise joined us, because she added a lot of value to our meeting, and gave a third party perspective which was very helpful. The wonderful part about all of this is I think I have found a very qualified tutor for Mattie to help him get back up to speed with his course work. It is my intension to connect Jen with Mattie's lower head of school soon. In addition, Jen is bringing her colleague with her to the hospital next week, and together they will administer us some psychological instruments so that we can pin point what Mattie's issues exactly are and design goals to address them specifically. Peter and I are happy about this assessment opportunity, because right now, it seems that medicines are just being thrown at Mattie in hopes of solving his emotional issues.

I was in a terrible mood all day, and I think there are two explanations for this. The first is that I can't stand seeing Mattie in so much pain and so upset. Unlike yesterday, today, I truly believe he is experiencing some sort of valid stomach pain. I say this because the anxiety and depression medication are not at all helping with his stomach issues. The only thing that helps is morphine. The second issue, which is my issue and not Mattie's, is that I am deeply upset that my hospital community that I have been a part of for 10 months shut down on me today, and I felt wasn't helping me meet Mattie's psychological needs. I felt in a way abandoned. I am sure that wasn't the intension, but that was definitely my perception. Peter and I are tired and worn out, and what energy a typical parent would have to try new things and pursue referrals we just don't have. The fact that I had to explain my feelings only further upset me as well.

Tonight Peter and I decided, after a reading an e-mail message from Linda (who reported that Mattie enjoyed having both of us at the hospital today), to stay at the hospital. Neither one of us went home and it is our hope that with both of us around Mattie will feel more secure, and also be able to more effectively address what issues arise. When Mattie gets in a tirade, it takes one of us to calm him down and another one of us to seek help. So this is our strategy for tonight!

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "This one is for those people who continue to help with everything, often without being asked! Things continue to be challenging, more so than most of us could possibly deal with on a daily basis. Some days are good, some feel like a difficult detour while others seem like a U-turn in the wrong direction. I would have to call Tuesday one of the latter ones. I think Mattie has reached the end of his emotional resilience for now and his reserves have run dry. I can see that in you and Pete as well although as adults you keep going even though the "tank is empty". Unfortunately, children are not able to do that and that makes dealing with Mattie even tougher. I am glad you got through to the staff and got Mattie some medications; getting the dose right especially when you have to deal with multiple medications is a balancing act on a tightrope; one small mistake and you are over the edge. I know you are really upset at the situation with Mattie's central line as well and having a central line infection after all this time is really a disappointment. However, I will tell you it is only your amazing work that kept it from happening sooner; central lines are incredibly prone to infection. I know of very, very few who managed a line for any length of time without an infection. I hope it clears up quickly and you can start getting Mattie ready for the next big hurdle in June-the chest surgery. My prayers are with you."

Tuesday, May 19, 2009

Tuesday, May 19, 2009

Quote of the day: "There's nothing like a mama-hug." ~ Adabella Radici

I am writing tonight's blog from home. Peter sent me home because I am not functioning very well. I could not handle another night in the hospital without a break. I am writing with an intense migraine and stomach pain. So I apologize already if I am not as coherent as usual.

Monday night was very challenging. You may recall that Mattie's doctor wanted him to go through the night without depression, anxiety, and pain medications. She wanted to determine what was causing Mattie's mental state, the drugs or a reaction to chemotherapy. It was good in theory to conduct this experiment, because if we could have actually done it, it would have helped narrow down what was causing Mattie's impaired mental state. However, it was a very rough night, and thankfully the medical resident on call, Gisella, was not only extremely helpful but compassionate to our situation. She could hear Mattie crying and screaming, and things were turning sour quickly. Thank God she was willing to call the attending physician and allow Mattie to go back on all his medications last night. I know we wouldn't have made it through the night without her assistance. In between naps on Monday afternoon, I observed that Mattie would wake up and be very coherent and was not in a mental fog, just was in pain and was anxious. So I felt very compelled to demand Mattie's medications back last night. Being educated in the field of mental health helps me greatly, but I can also say that the gut feeling of a mother should NEVER be ignored. I knew Mattie was having a reaction to being overly medicated with psychotropic drugs, and indeed my feelings were confirmed by Mattie's psychiatrist today.

When Mattie woke up today, he was in fine spirits. Linda was with me, and Mattie and Linda went to the childlife playroom and started working on projects. I can't thank Linda enough for her help today. Denise, our social worker, and Jenny, one of Mattie's art therapists, also joined Mattie in the playroom as he was designing a car out of a cardboard box. Mattie was happy and animated, and I thought, emphasis on thought, we had turned a corner. While Mattie was playing, I went to lunch on campus with my parents. I want to thank all of you for writing to me and showing your support and asking about my mom. She is holding her own, but still has pain from her back spasms. It was nice to have lunch, but I have to say no matter what I do now, Mattie's situation weighs heavily on my mind. My mom reflected on how upset she was that this is happening. This is not what she wanted my life or future to be like. I understood. No one would wish such a crisis upon anyone much less their child.

I ran back from lunch because I wanted to meet up with Mattie's psychiatrist at 2pm. Dr. Biel saw Mattie in rare form today. Mattie was happy, coherent, and animated. So clearly he ruled out the need for a MRI of Mattie's brain. That is the good news for the day! Dr. Biel cut back Mattie's depression medication dosage, and it is our hope that this helps Mattie. I told Dr. Biel that Mattie's sleep cycle is very disturbed and I have no doubt this may have some sort of consequence on his mood. So today he prescribed melatonin for Mattie. Melatonin is a naturally occurring hormone and it is important in the regulation of the circadian rhythms. Many things in Mattie's life may cause his body from adequately producing melatonin, such as chemotherapy, anxiety/depression medication, and living in different environments (like the PICU). So we shall see if this helps, but one thing is for certain, I felt as if Dr. Biel was working with me collaboratively and is trying to improve the situation in some way.

However, the afternoon, was VERY difficult. Mattie was scheduled to receive MTP-PE this afternoon. Tricia, Mattie's wonderful HEM/ONC nurse, tried to administer Mattie's oral premedications. He needs these premeds in order to prevent a substantial negative reaction to MTP-PE. Mattie refused to take these oral meds from Tricia. So Linda and I were tasked with this. Linda and I tried everything to get him to take Tylenol and an antihistamine. What normally would take 5 minutes, took us OVER two hours today. Mattie was hysterical, crying, and at times inconsolable. We tried our hardest to get him to take the medicines, but were only half way successful. However, after this experience, not only was I wiped out, but so was Mattie. He fell asleep after this long battle. I continue to be amazed though by the medical community's lack of sensitivity and understanding for psychological issues. They are aware of what Mattie is going through, however, do they have strategies to help me, to alleviate these stresses? Definitely NOT! Their solution is to throw more medicine at the problem! To me psychological issues are so far out of the realm of their expertize and training, but what truly gets me is when the residents pretend to have some understanding of what they are talking about. I asked the medical resident today to page Dr. Biel, Mattie's psychiatrist. Dr. Biel was busy with another patient and couldn't come to observe Mattie. So the resident said she would give a report to Dr. Biel. I felt the need to correct her. I told her I did not need her to give a report to him, since I was more, if not better trained, to give him a report myself. I am always open to help and constructive feedback, but I refuse to sit back and have someone who doesn't have the foggiest clue give me a lecture!

Mattie slept for quite some time this afternoon, and therefore landed up having an accident while napping. When Peter arrived from work, he found me trying to change Mattie and clean things up at the same time. Neither were going well, because Mattie was hysterical. Fortunately Peter was there to help me. We changed Mattie and I changed Mattie's linens. While in this process, Dr. Myers (the HEM/ONC attending) came in and told us that Mattie has a central line infection. This is ALL I needed to hear tonight. This was like the last nail in my coffin. I have kept Mattie FREE of a central line infection for 10 months. I can't believe at the end of his treatment he comes down with this. They started Mattie on Vancomycin (which is usually an antibiotic used as a last resort). Vancomycin is very powerful, and I also hear that fighting a central line infection is very hard to do and to some extent it never really clears up. Not the best of news to hear as Mattie heads for surgery in June. Needless to say, I had to remove myself from the hospital tonight. I can't handle the whining, crying, non stop demands, emotional outbursts, and now this intense infection. As I said to Ann tonight, what have I done to deserve this? There is no real answer, but clearly Peter and I apparently haven't dealt with enough yet.

We want to thank the Hanley family for a lovely dinner tonight. Thank you for supporting us!
Peter called me tonight to let me know that Mattie had a reaction to MTP-PE again and needed demerol to counteract the side effects. So this makes about five negative reactions to MTP in a row. I have no idea what the night holds for Peter, but the fact that Mattie is on demerol means that he most likely will be knocked out. Which is a mixed blessing. It will help him sleep, but it will prevent him from taking any of his needed oral medications!

As we head into Wednesday, Mattie will be getting his bone density scan at 11am and then a follow up x-ray of his right ankle (the one with the suspected fracture). I just hope things get a little easier this week, because I simply don't have the stamina for much more.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Another really tough day with yet another kink in the long road. I simply don't know where you find the internal resources to keep going with everything that happens. Monday's blog has the visual image of a ping pong ball going back and forth, sometimes almost too quickly to be seen. Mattie needing meds/possibly over medicated/then without meds; the changing/conflicting recommendations of surgeons about how to proceed with Mattie's needed lung surgery. It is a wonder that you can think at all with all that going on. And through it all you are Mattie's advocate, beacon and anchor to which he clings. In short, I think you are pretty amazing."

Monday, May 18, 2009

Monday, May 18, 2009

Quotes of the day: Charlie sent me these quotes and she said, "These quote are for both Ann's parents and you and Pete!" "Chains do not hold a marriage together. It is threads, hundreds of tiny threads which sew people together through the years." ~ Simone Signoret

"A wedding anniversary is the celebration of love, trust, partnership, tolerance and tenacity. The order varies for any given year. " ~ Paul Sweeney


Oh what a night! I used to think my days were long prior to Mattie getting sick, but now, they are just over the top. I am on the go from the moment Mattie wakes up until he goes to sleep. On Sunday night, I couldn't get Mattie to bed until 3am. The irony is after 1am hits, I too can get a second wind, and then I have a hard time falling asleep. But today I am simply wiped out and can barely keep my eyes open. Naturally when I am in this state nothing goes according to any sort of plan!

Mattie was up and down all night long going to the bathroom, so it was no surprise that he woke up at noon today. When Mattie woke up he was edgy. So edgy and clingy, that I could barely take a shower. He was whining throughout the time I was getting dressed. I can't explain how unnerving it is to try to speed around and pull yourself together when your child is crying, whining, and is shouting out non-stop demands. I am sure to most parents this could easily describe your child on any given day, but when you child is as sick as Mattie, the typical things that you would ignore and try to rationalize away actually become important signs that you do not want to dismiss. Every cry and expression of help becomes a form of communication that should be taken seriously.

Before Mattie was going to head out the door for his bone density scan, I had to flush his central lines, administer him his IV GSCF (a white blood cell growth factor), his anxiety medication, his ulcer medication, and then give him his IV anti-emetic, Kytril. Mattie handled this all well, but later in the day when it was time to get dressed to head to the hospital, Mattie did not want to leave the house or put on clothes. He wanted to stay in his pajamas. During this time, he was also developing the chills. At one point I had a space heater blowing on him and covered him with two blankets. But nothing was helping. He melted down several times and I started to grow concerned, and paged Dr. Synder. She called back right away, and wanted to see Mattie in clinic before his bone density scan.

It was a true feat that I was able to get Mattie into his wheelchair and into the car. However, in addition to Mattie feeling ill, my mother also wasn't feeling well. She could barely walk, and was in intense pain. The drive to the hospital was also enlightening. Mattie began to get dizzy in the car, and at one point wasn't rational. He said he saw the sky on the ground, and the ground in the sky. He saw trees upside down, and then the real kicker was that Mattie saw train tracks in the sky. All very disturbing to hear from the mouth of a seven year old. After observing all of this, I suspected that Mattie has been over medicated between anxiety and depression medications.

When I checked Mattie into clinic, I wheeled him right into a room, so he could rest. Within minutes, Jenny and Jessie arrived to see what was going on, and they had Linda come down to help. So these wonderful ladies came to our rescue yet again today! When Linda arrived, she brought activities for Mattie to participate in, however, by this point Mattie was sleeping. Mattie fell into a deep sleep. Actually a type of sleep that was almost concerning. He was literally non-responsive, and when Dr. Synder came in, we basically tried very hard to wake him up. But Mattie looked drugged out. So between the chills, dizziness, delusions, and the fact that his white blood cell count dropped in half since he was discharged on Saturday, Dr. Synder decided to admit Mattie to the PICU for 24 hours of observation. The condition though was that Mattie would not be allowed to take his depression, anxiety, or pain medication for the rest of the day and night! She wants to see if these medications are altering his state, and that his condition isn't a by-product of the chemotherapy (a scary notion indeed!). In fact, if Mattie doesn't pull out of this mental fog tomorrow, Dr. Synder is ordering a MRI of his brain. I tell you the fun just never ends around here. So though I know in my heart of hearts that Mattie is having a reaction to being over medicated, a part of me can't help but worry once I heard about the potential for a MRI tomorrow.

Linda stayed with me throughout the entire time I was in clinic. She helped me with Mattie, and I had an opportunity to apologize to her. Though I did not mean to do this last week, I was upset during Thursday's physical therapy session and got frustrated with Mattie's constant need for incentives. Some how I feel that Linda got caught up in my frustration, and I felt the need to tell her I was sorry if that indeed happened. As always Linda, handles things with the utmost professionalism. When my mom came into the exam room, Linda and I could tell that she was in pain, and apparently the pain was so intense, she was in tears. Linda walked my mom to the ER, and helped expedite the check in process for her. I am very grateful for Linda's assistance, and I am also very grateful that Jenny also went to the ER and stayed with my mom until she went in for an examination. I am deeply appreciative of Linda and Jenny's help, because there was no way I could be in two places at once. The doctor feels that my mom is having back spasms, which of course are painful, and I have no doubt are exacerbated by stress. My daily life is actually very stressful and intense, and I have no doubt observing these constant stresses upon my family can take its toll out on my parents.

As soon as Mattie was admitted to the PICU, he started to wake up a bit and began to play with Linda. I wish he acted this way in clinic, because this may have prevented us from being admitted. Mattie and Linda spent some time placing glow in the dark stars all over his hospital room. While they were doing this, I had a visit from Dr. Chahine. Dr. Chahine is the doctor scheduled to perform Mattie's lung surgery on June 15. Dr. Chahine heard about our concerns regarding the sternotomy. However, he told me that he and his colleague, Dr. Guzetta (at Children's hospital), still felt this was the best procedure for Mattie. He told me that at the moment the scans show no lesions in the hylem area of the lung (the posterior portion of the lung). He assures me that if there are small lesions in the hylem during the time of surgery then these lesions could be removed through a sternotomy. Only bigger lesions would be impossible to remove from the hylem using this procedure. The thinking though is that if there were bigger lesions, the scan would be picking them up. So in essence Dr. Chahine is pretty confident that the sternotomy is a better procedure for Mattie. He is impressing upon me that recovering from thorocotomies are very long and challenging. Not that a sternotomy is a walk in the park. None the less, I feel like my brain is part of a tennis match. First it settles on a sternotomy, then thorocotomies, and now back to a sternotomy. When will this torture end? I don't know what the right answer is, and I can't wait until Peter talks with the surgeon at the Mayo clinic to find out why he feels Mattie must have bilateral thorocotomies. So all this information only added insult to injury, on my already tired state.

My parents came to visit Mattie briefly after they got out of the ER. However, Mattie was screaming in pain, and calling out for pain medication. It is a very sad and painful thing to observe, and part of me prays I survive the night. Mattie in pain, and no medication to turn to for help. Wow, this is a special torture I wish upon no one. I assure you anxiety is very real, and without proper attention, it can get out of control, and I am already seeing intense fears and agitation from Mattie this evening. Keep me in your thoughts tonight, my brain in filled with Mattie's crying and whining sounds. I feel today that I am operating under a heightened level of stress, and I just came back from pleading Mattie's case with the medical resident! I feel that Mattie and I won't make it tonight without anxiety meds.

When Peter arrived from work, he brought us some of our things to make it through the night. I refuse to unpack anything, since I am assuming we won't be staying here long. Or in other words, I assume we will be discharged before we have to be readmitted for neutropenia.

We want to thank the Ferris family for a wonderful dinner from Founding Farmers. We loved it and I know Mattie will love the two tricks and stretchy insects tomorrow! Thank you for thinking of him, and for your constant support.

I truly wonder how Peter and I function on such little sleep and with no end in sight. At some point you really think something has got to give. Then I think what an incredible punishment Peter and I have to endure. Seeing your child so sick, screaming in pain, body and mind transformed, and the list goes on. Keep us in your prayers.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was really glad to see pictures back on the blog as that told me things were calming down a bit. I am so glad you and Pete and your parents got to go out to the anniversary party. These events are so necessary to keep one in touch with what is important in life. The pictures are wonderful and they reflect the love that this couple so clearly feel for one another. I know that you don't like giving Mattie medications for a number of reasons including side effects, but Mattie seems to be so much more amenable to therapy with the anti anxiety medication that it clearly is a support that he can really use right now. We as adults have ways of dealing with our anxiety that children don't and even so, I have seen many adults whose functioning was clearly impacted by their inability to deal with fear and anxiety. Mattie has limited resources as well as very little control over the situations that make him anxious and if the medication damps that down enough so that you and others can work with him, I can only regard that as a blessing right now. I don't know if Mattie really knows what is yet ahead but I do know that he is very sensitive to your feelings so that even if he doesn't have the specifics, he knows there is something that is worrying you and so he is also worried. There is not much you can do about that except to make the best decisions you can and go forward with faith that you are doing your best for him."

Sunday, May 17, 2009

Sunday, May 17, 2009

Quote of the day: "Any man can be a father. It takes someone special to be a dad." ~ Anonymous

I am happy that Peter wrote the blog posting on Saturday because I think it is imperative that you get to hear from him as well. Peter and I are both devastated by Mattie's illness, but our worlds and experiences as it relates to Mattie's care are naturally different for many reasons. Clearly Peter has to work, but I think working full time when caring for a child with a life threatening illness is a blessing and a curse at the same time. I am sure Peter agonizes between guilt and worry about Mattie while he is at work and while Peter is with us is worried about how he will have the energy and brain power to meet his job demands. None the less, I believe that stepping away and having to work and interact with the outside world gives Peter a depth and perspective that I have lost. Not that I want it, and the funny part is now that I have experienced cancer, I have come to personally feel that work is so overrated. I was always so busy prior to Mattie's illness, and in a way being so busy prevented me from enjoying aspects of life. Sad that I had to have this happen to see this.

Peter stayed with Mattie on Saturday night. However, Mattie did not fall asleep until 2:30am! Mattie then had a rough night of jumping up and down going to the bathroom, and during which time had an accident. So of course all the linens needed to be changed. Peter said that Mattie was very embarrassed by this, and Peter totally downplayed the whole incident, which greatly helped Mattie accept what happened. Thankfully Mattie is also taking his anxiety, depression, and ulcer medication. It makes things much easier at home, and we are noticing a major improvement now that he is back on Klonopin for anxiety. For the most part, I am rather conservative about adding medications to address certain issues, but I could see once again, we really had no choice in the matter. Mattie needs acute relief, and if his mood isn't stabilized, I know what can happen. The Fall was a great learning experience for us and with another major surgery in the near future, managing anxiety is crucial. Case in point, Mattie over time has become so anxious, that I can't even touch him with a wash cloth or rub lotion on his skin. Now that he is back on Klonopin, these important daily tasks are manageable. In fact, Peter and I are seeing him take ownership for his knee brace and exercises. He is personally using "George," Mattie's left leg, to push down on his right knee and stretch it. This is excellent progress!

As Charlie astutely observed, when I am overwhelmed, you most likely won't be seeing pictures along with my daily commentary. So today, I will be making up for the last two days. The first picture I would like to share with you is the beautiful collage that Linda made for my family. This collage is deeply meaningful to me and is now hanging in the front hallway of our home. The collage has pictures of nurses, doctors, and support staff at Georgetown who have become instrumental in our life. In addition you can see that all these special individuals signed the matting of the collage. In addition to the collage, Linda wrote us a very special and heartfelt card that I will always hold dear. I realize it is hard to see the full details of the collage from this picture, but I wanted to impress upon you how special a gift it is to me.

While Mattie was in the hospital last week, our neighbor, JP (owner of JJ, our resident Jack Russell Terrier) was in Spain on business. When JP came over yesterday to welcome Mattie home, he gave Mattie a special gift that he brought back from Spain. JP gave Mattie a poster, which pictures a matador and bull. You will notice that Mattie's name is listed on the bottom of the poster. I am not sure how JP accomplished this, but Mattie has now become a famous matador, and is in good company because he is listed alongside other famous matadors on this poster. It was a very special gift, and it too is hanging in our front hallway.

This afternoon, Liza (one of Mattie's favorite hospital volunteers) came over to spend some time with Mattie. In order to get Mattie ready, so I could leave the house, it seemed like a major feat unto itself. Before we left, we have to flush Mattie's central lines, administer GCSF through Mattie's central line (which takes about 15-20 minutes), get Mattie to take his anxiety medication, and his ulcer medication. Some how that doesn't sound bad, but the execution of it seems painful!

While Liza was with Mattie, Peter, my parents, and I all headed to Alexandria to attend Ann's parents 50th anniversary party. We were all honored to be included and to share in the celebration of this special couple. In addition to having the opportunity to get to know Ann quite well this year, I have also had the good fortunate to meet her parents. While Ann, Bob and their children went away over spring break, it gave me the opportunity to visit with Ann's parents in their assisted living community and to get to know them. I have great compassion for Ann's parents because they lost their son to cancer, and on many levels I can relate to their pain. We maybe generations apart, but cancer has united us. The party today was filled with wonderful food and good spirit. I will share some of the lovely photos captured from the event.

Left: Vicki talking to John ("Sully"), Ann's Dad! Peter and Sully get along beautifully, since they are both die hard Red Sox fans.

Right: Ann got some of the kids together today to sing Happy Anniversary to her parents. They were adorable and filled the room with life and activity!

Left: Peter took some pictures of Mary and Sully from their 1959 wedding album. Here you can see them dancing together. The pictures were stunning and really captured the spirit of this couple and the start of their life together. The irony is while I was with Mary today someone asked her if she would do this all over again (I assume she meant marry her husband, Sully.). Mary hesitated. Not because she had any doubt about her marriage, but because she was saying if she could do it all over again, she would want to repeat things without her son developing cancer. I understood her hesitation immediately!

Right: I love this charming picture, in which the photographer captured this couple's excitement about starting their life together as the car drove off.

Left: Some how this silhouette of Mary and Sully just spoke to me.

Right: Vicki, Mary, and Ann holding some beautiful roses from the Doane's garden. We want to thank the Doane's for these special flowers. I was truly touched to be thought of!

I am very thankful that Ann invited us. Peter and I need normalizing events like this and also events to look forward to. In fact, I was looking forward to getting out all week, and this event kept me grounded throughout this week in the hospital. It is also nice to be included into Ann's family's life. It is true that Ann is our Team Mattie coordinator, but to me, she is so much more than that.

When we arrived home, Mattie was having a great time with Liza. In fact, he was moving about on the floor and was animated. He led me into the kitchen. I have always given Mattie a cabinet of his own in the kitchen, where we stores all of his things. Well today he went into that cabinet, and took out every item and WASHED it. He washed it because after the kitchen remodeling that took place this week, everything was a mess. He and Liza actually saved me from doing this, because this was the last cabinet I needed to clean out. Though he had things stacked up all over the place, I commended him on his efforts! He was very proud of his initiative.

We spent the rest of the time this evening doing laundry, watching the Muppets, and sitting around the table eating and chatting. In fact, we dared Mattie to eat. If Mattie complied and ate, then Peter would have to dance like a chicken. So let me introduce you to "Peter the Dancing Chicken!" While Peter was dancing, Mattie got out his chicken that played the Dance of the Ducks/Chickens song! Got to love these two! My parents and I were laughing hysterically over this scene!

As we head into Monday, Mattie heads back to Georgetown Hospital for a Dexascan, or a bone density scan. The scan is designed to assess Mattie's level of osteopenia. Wish us luck.

I end tonight's posting with two messages I received today. The first one is from my friend, Charlie. Charlie wrote, "Wow, the last day of chemo reads like the last few miles of the Ironman triathlon, running with bruises, blisters, exhaustion and dehydration but determined to reach the finish line. I have this mental picture of each of you running this race and handing Mattie back and forth as the one who has been supporting him simply collapses from sheer exhaustion. Peter, you did an amazing job of getting Mattie to the ribbon. You and Vicki have endured so much, it is so hard to believe that there is yet more to deal with. It is hard to understand how a child who can be so mature at some points can fail to understand that taking a medication will alleviate so much of his pain and panic and fight against you so hard. I think we have a couple of things going on here; first, Mattie may now be in the periodic chains of full blown panic attacks; if so, even if he were an adult, it would be almost impossible for him to comply with anything you wanted him to do until it subsided. Second, it may be (and you might want to consider a consult with a pain specialist) that Mattie's nerves have suffered an "insult" from repeated chemo and the surgery and now are responding with pain messages whether or not something is actually happening. This phenomena is well documented and can be treated; it is real pain and needs to be addressed or going forward with therapy may be problematic."

The second message if from my friend and colleague, Lisa. Lisa wrote, "Vicki, I am not in the least bit surprised in Mattie's recent display of fear and anxiety--to me it makes perfect sense. Think of it this way, for many weeks you have long discussed your fear of losing the magnificent support system evinced from the hospital doctors and helpers. You have expressed your worry and anxiety about that "loss" and the "unknown." Similarly, Mattie must be feeling the identical way. He knows that things will change, he will lose his hospital buddies who have become a steady, constant, "dependable support." He must be thinking, "now what?" Also, not only must he be concerned about that change is his awareness about mom and dad's increased anxiety. Even if he has never heard you or Peter mention it, I am sure he can FEEL yours and Peter's anxiety and worry about the future. Finally, my guess is that he knows something about another operation. AND he may be thinking, "he we go again." Something else. What next?I say all this to say: ALL the behaviors, anxiety, worry, "bad behavior" that you described makes sense, is most appropriate and is Mattie's way of saying, "I am scared mom and dad." I hate the word, "normal" and teach my students to avoid this word, but I will use it in this case. I think his behavior is "normal." I am unsure about self-soothing, to me this sounds like someone is trying to apply this concept as the would to an adult or a child who is not faced with the challenges with which Mattie is faced. I appreciate the experts on your case and thus I am not going to de-emphasize there "expert interpretation," but from my vantage point Mattie does an excellent job of self-soothing and managing things on most days and that is "KEEPING BUSY." His way of self-soothing is "doing," "moving," and "directing and being." On the days he does less well he is a 7-year-old with cancer (in pain) doing the very best he can with the life he is living and in a word: he is scared and may not be able to have a conversation about it!"