Saturday, May 2, 2009
Quote of the day: "You have it easily in your power to increase the sum total of this world's happiness now. How? By giving a few words of sincere appreciation to someone who is lonely or discouraged. Perhaps you will forget tomorrow the kind words you say today, but the recipient may cherish them over a lifetime." ~ Dale Carnegie
Last night was a decent night for Mattie, as I sent Vicki home around 6pm to go home for a much needed decompression from life in the PICU for a few days. Because of my work demands, and the ten months of accumulated fatigue, sleep deprivation and depression, neither of us can maintain a full-time caregiver schedule anymore for Mattie. Up until last month, most times, both of us would stay in the hospital with Mattie each night he was getting chemotherapy or was neutropenic, as Vicki and I supported each other when tending to Mattie. However, we are both beyond the breaking point, so we forced ourselves to make a change in our coverage schedules.
I had made an impromptu stop at Toys-R-Us Friday before arriving at the hospital to stock up on my bag of tricks, since Mattie was starting to feel better, which means his "appetite" for playtime and new things only increases with each passing moment. Mattie can go from morning through midnight constantly playing, and it's not the kind of play where he can entertain himself. So having new things in the old bag of tricks is essential when going one-on-one with Mattie in a small PICU room. Mattie and I played until midnight assembling a magnetic dinosaur, putting together a 3D Scooby-Doo puzzle, and building a Lego combine harvester (a piece of farm equipment). A little after midnight, I called the end of play, and Mattie chose to switch to a Backyardigans DVD to fall sleep to. I jumped in bed and around 12:40am Mattie woke me up to turn off the DVD player.
Other than the usual "up-every-two-hours-to-pee routine" it was an uneventful night (that is uneventful for living in a PICU environment). Around 8:15am, Tricia came in the room to check in on Mattie, and I got it moving with a cup of instant coffee and a mug I keep in our cases of materials. After cup number two I started coming out of my daze a little. Mattie was still asleep so I made the most of the time to return emails, update my tracking spreadsheets for Mattie's march registrations, and worked on finalizing the Program for Mattie's event. I also had the chance to periodically catch up with Tricia. As many of you know Tricia is yet another one of the special Hem/Onc nurses who have lived through the thick and thin of things with us over the last ten months. She is another member of our family as are most of the Hem/Onc nurses now, whether they want to be or not. Because I work during the weekdays and leave by 7am and return after 7pm typically, I rarely get a chance to see all the nurses who usually work the day shifts who I got to know so well back in August when Mattie started chemo. So, it's always nice for me to see these nurses again and to catch up with them.
During the morning, Dr. Toretsky was the in-patient doctor this weekend, and Jeff had been signaling to us on Friday that Mattie would probably clear some time on Saturday in which case we would be discharged. So starting Friday Vicki got the wheels moving to get us home hydration fluids and Kytril delivered on Saturday. After several phone calls and coordination with Kim from OptionCare (our home health products provider), we locked into a plan. Kim is fantastic and has really saved us several times and is always willing to go the extra mile to take care of us. In addition to coordinating with Kim, I asked Jeff to move up the blood draw since I know it can take up to 6 hours to get lab results back for the Methotrexate level. Jeff was going to draw at 5 or 6pm on Saturday, so I asked him to move it up to 2pm so that we had a chance of getting home at a reasonable hour. I suspected that Mattie would clear by then, and fortunately he did so we got to go home.
So sure enough, Mattie's blood draw at 2pm today returned around 5pm indicating that he had cleared and was ready to go home. Meanwhile, I had to coordinate closely with Vicki who was running all sorts of errands including a much deserved and needed trip to the salon. The challenge we had was that I did not have my car at the hospital, so Vicki and her parents came over around 5:30pm and helped me carry our things down and load the car. I had spent the morning packing up the room so that all we had to do was carry things out of the hospital.
At 6:00pm we were loaded up, and Mattie and I drove home while Vicki and her parents went out for a nice dinner. By the way, Vicki reported to me tonight that when they entered the Clyde's they saw an advertisement for Mattie's March, so clearly, there is no place Team Mattie members cannot get to! They had a nice dinner, meanwhile Mattie and I continued to build Mission 6 of the Lego Agents series, which is a seemingly innocuous looking semi-trailer truck filled with secret agent gadgets, equipment and vehicles. Both my fingers and posterior (from sitting on the floor) were numb by the time we were done. But, Mattie had fun and is presently playing with the set, so it's safe to say that it was a successful mission!
This week the registrations for Mattie's March on May 9th continue to come in as well as donations to Mattie's fund. It is quite exciting for us to see the outpouring of support for Mattie and us. Thanks to all of you who have registered and who are working to make this a special event for Mattie!
This week I have also been meeting with some organizations focused on developing treatments that address specific pediatric cancers. As I have mentioned before, I have committed the remainder of my days on this earth to raising the awareness of Osteosarcoma and for developing better treatments and a cure for this horrible, horrible disease. Thanks to friends, I am making in-roads and starting to learn more about how things operate in this area. I intend to have a plan developed by the end of the summer that maps out what we are going to do in this area, so stay tuned.
I also want to promote something else in time for Mother's day. The Dana Farber Cancer Institute (DFCI) and the Jimmy fund have been helping cancer patients now and performing miracles whereever possible for over 50 years. Once again this year, DFCI and the Jimmy Fund are running a promotion for online e-cards for Mother's Day. For as little as a $5 tax-deductible donation, you can create an e-card for Mother's Day and schedule a time for it to be sent to your recipient's email. On the blog, on the left-hand side towards the top you will see a blurb about this and links to take you to the site. It's another nice way to say happy Mother's Day and to help a great organization fight the cancer fight.
I close tonight with some thoughts about the status of our fight against Mattie's cancer. We are almost done with the scheduled chemo and the May 11th admission will be the last for now, even though Mattie will continue to get the experimental drug into September. Many people upon hearing this are happy for us since it seems like the end of a ten month period of an awful, awful existence. In reality, I think both Vicki and I are really scared about this transition. For ten months now, we have grown into a certain level of comfort (or rather been desensitized) because Mattie has been on chemo, which means we have the best agents available coursing through his body almost every week, seeking out and hopefully destroying the cancer. The end of treatment raises a question in my mind that I do not believe I will ever comes to grip with and will forever haunt me, which is, "Did we get all of it?"
Osteosarcoma is a particularly devious disease because so long as any of it, no matter how small that amount is, remains in Mattie's body, it means Mattie will get it again. I remember having doubts about Mattie when he was well, thinking things like "will he be smart," "when will he learn to read," "will he be polite" and "will he be able to enjoy sports and physical activity." Faced with what is now our reality, these questions seem trivial. I'm not sure how I'm going to work through all this, as I do not see an end to this. Our battle with Osteosarcoma will be a lifelong battle and one that neither Vicki or I will ever give up on nor do we know of any other outcome other than winning.
Thank you Charlie (a friend of Vicki's) for sending along this message today. Charlie wrote, "I was so glad to see that Mattie had a better day on Friday. One day like Thursday is enough for a lifetime, let alone in one week. It was good to see Mattie up and doing his therapy and I hope he is successful at walking without the support of the walker before the surgery; as well as allowing him to continue his physical therapy, I think it will increase his feeling of control which will be needed with the new surgery coming up. Mattie's gift to you was beautiful and how wonderful that he was able to create it himself; so much more meaningful than something purchased at a store. I think your handling of Mattie and holding him responsible where you can, is absolutely appropriate and will pay dividends for Mattie in the long run. When you commit to something, you should be willing to put forth the effort to complete it if possible; this is as true for therapy as for projects."
May 2, 2009
May 1, 2009
Friday, May 1, 2009
Friday, May 1, 2009
Left: The race is beginning! From left to right --- Meg, Mattie, Linda, Anna, Alissa (Anna's intern), and Jey (Mattie's "big brother")
Left: Anna threw Meg into an office and blocked the door so Mattie could continue on the race course and get a leg up on Mattie.
Right: I had my eyes closed as my mom wheeled Mattie in to give me his surprise.
Quote of the day: "Promise me you'll always remember. You're braver than you believe, and stronger than you seem and smarter than you think." ~ Christopher Robin to Pooh (A.A. Milne)
Mattie had a much better night on Thursday, in comparison to Wednesday. Mattie had his teary moments though, and there were times when he was intensely itching both his leg with the cast and his chest by his central line dressing. Mattie even asked Peter and I to change his central line dressing (something totally unheard of for Mattie). So Peter and I started the process. In fact, I got a corner of the dressing loose, then Mattie absolutely lost it and asked why we were changing his dressing. Mind you he is the one who requested we do this. In any case, he got himself so upset that I landed up not actually changing his dressing. Peter helped me with that moment in time, and then he went home for the night. Once Peter left, Mattie got it in his head that he wanted to draw a star. He asked me to draw one, and after I did this, he got very upset, because in his estimation he "couldn't" draw a star, and his star wouldn't be "perfect." We talked about this but it was very hard to rationalize with Mattie. He got very frustrated in his perceived lack of ability. I kept encouraging him and asking how I could help him. I made a star stencil for him to use, I gave him a sample star to try to trace, but whatever I offered Mattie only frustrated him further. He eventually did draw a star, but was so disgusted with what he drew that he crumpled up the paper. It was at that point I called Erin in. Erin was our fantastic HEM/ONC nurse last night. You may recall that Erin trades Mattie hugs for empty syringes for him to play with. When Erin came in the room I had her judge Mattie's star. She loved it. He listened, but was still unhappy. Erin then brought in two board games for us to play. Now mind you it was close to midnight. Erin and Mattie teamed up against me and played the game, Guess Who. We also played Candyland together. We had a good time, and this put Mattie in a much better place. I can't thank Erin enough for her kindness, calmness, and support for Mattie. It made a difference.
When Mattie woke up this morning, Kathleen and Haley were his nurses. They both can hold their own with Mattie and helped to draw him out of his usual morning funk. Mattie woke up feeling nauseous, but it eventually passed without having to give him anything. After my experience with Ativan and Morphine on Wednesday, I rather be conservative on giving medications unless they are absolutely necessary. Meg came to play with Mattie at noon, and the irony is Mattie had NO recollection that Meg visited on Thursday. I am NOT surprised, Mattie was in a drugged stupor for most of Thursday. Soon after Meg arrived, so did Anna (Mattie's physical therapist). Meg and Mattie are great racing buddies, and Mattie was looking forward to Anna's arrival so that he could challenge Meg to a race. Mattie literally walked with his posterior walker from his room into the hospital hallway. That alone is a big walk, but then Mattie raced around the whole fifth floor of the hospital. Anna set up an obstacle course, and my parents helped to cheer on Mattie. Today's race was better than ever. Just when I think Meg can't possibly ham it up more, she surprises us. Anna too got into the act today. I snapped some wonderful pictures of the excitement. One thing I do notice is that Mattie seems to walk much better with the cast, and it is my hope to keep this up once the cast comes off. I think the cast provides support to Mattie's wobbly right knee.
Left: The race is beginning! From left to right --- Meg, Mattie, Linda, Anna, Alissa (Anna's intern), and Jey (Mattie's "big brother")
Right: Anna helping Mattie to win the race, by cutting off Meg - LITERALLY!
Left: Anna threw Meg into an office and blocked the door so Mattie could continue on the race course and get a leg up on Mattie.
Right: On the obstacle course, Mattie had to pick up a baseball bat and swing and knock off the bean bag frogs on the plastic blocks. Again, you can see Anna (on the left) holding back Meg.
Left: Mattie crossing the finishing line first! What you can't see is Meg was hamming it up, huffing and puffing on the floor, because Mattie tired her out racing.
After the race, Mattie went back to his room to work on his Super Mattie Adventures book with Meg. Meanwhile I had a chance to speak with Anna. Anna has a great goal for Mattie. She would like him to begin walking without the walker before his surgery in June. An excellent goal, since we both know he will not be physically able to use his walker once his lung surgery takes place. So that Mattie doesn't lose immense ground with his leg, he needs to be somewhat self-sufficient in walking without a walker. Anna and I both agreed that Mattie is physically capable of meeting this goal, but emotionally meeting this goal seems like mission impossible. He is scared and frightened, and I wish there was a quick fix for that problem, but there isn't. Anna also understands Mattie's personality. If you push Mattie when he isn't ready to do something, this will do more damage than good, and Mattie will shut off from the entire physical therapy process.
While Mattie was playing with Meg, my parents and I went for lunch on campus. It was nice to get out of the PICU and be able to eat lunch without bouncing up and down or playing. Though I fully admit that it is hard to move from a stressful moment to moment existence to a calm world.
After lunch, my parents and I bumped into Dr. Synder, Mattie's oncologist. We had the opportunity to ask her some questions, and Dr. Synder revealed to me that Mattie's lung lesions in March were classified as calcified lesions in the CT scan report. This conversation came up because this week I read on an sarcoma listserv about a particular CT scan technique using something called "bone windows." A medical doctor at MD Anderson was recommending to a particular parent the importance of this special CT scan technique in order to determine if lung lesions are indeed metastases (meaning if bone cancer has metastasized to the lung, then the lung lesions would have bone cells within them). The doctor at MD Anderson claimed that this specific CT scan could help determine if there were bone cells within the lung lesions (at the moment the only way I know to confirm metastasis is through a pathology report generated from the surgical removal of the lesions). This listserv posting intrigued me, so I asked Dr. Synder about it. I then called Peter on the phone to see if he knew that Mattie's lesions were "calcified." This was news to him too. I have looked this up, and it turns out that lung lesions that are benign or cancerous can be calcified, but this was a term that caught me off guard today. Maybe because when I think of the term calcified, I think of bone, which made me leap to the conclusion that these lesions are indeed osteosarcoma.After I bumped into Dr. Synder, we also had the opportunity to bump into Debbi (our sedation nurse angel). Debbi read about Mattie's reaction to being on morphine and ativan. I told Debbi that I am truly confused. The PICU doesn't allow patients to be on Versed and Ativan at one time without an intensivist present, because together these drugs have a sedation effect. So I asked Debbi why Mattie was able to then receive Morphine and Ativan at one time? Because from my perspective Ativan and Versed are both anxiolytics (anti-anxiety medications), and if Versed with Morphine could cause sedation, then couldn't Ativan and Morphine? Well in Mattie's case, I think the answer is yes. I would say that Mattie was under a form of sedation on Wednesday night into Thursday. Debbi promised to look into this for me, and I know Debbi will get down to the bottom of this.
When my parents and I got back to the PICU, Mattie was with Meg and Jenny. Meg let me know that she and Mattie had a bit of a blow up today. Meg was working with Mattie and helping him recreate his story of Captain Mattie. But then Mattie had enough, and he wanted Meg to do the rest of the work for him. Meg told Mattie she would help him, but that this was his project. Mattie is good at delegating tasks, and Meg wanted to hold Mattie accountable to finishing his story. Meg said that Mattie did not like her request, and he did not speak to her for a while. However, if she hadn't told me, I would never have known. Since they looked like good pals when I showed up. Later in the day, I confronted Mattie on his behavior with Meg. He looked at me sheepishly, and admitted to everything Meg told me. It actually was a teachable moment for two reasons. First, the lessons is that it is important to finish what you start, and second, that friends can disagree, but that is healthy, they can resolve it, and move on. I am happy Meg told me what happened so I could process it with Mattie.
When my parents and I got back to the PICU, Mattie was with Meg and Jenny. Meg let me know that she and Mattie had a bit of a blow up today. Meg was working with Mattie and helping him recreate his story of Captain Mattie. But then Mattie had enough, and he wanted Meg to do the rest of the work for him. Meg told Mattie she would help him, but that this was his project. Mattie is good at delegating tasks, and Meg wanted to hold Mattie accountable to finishing his story. Meg said that Mattie did not like her request, and he did not speak to her for a while. However, if she hadn't told me, I would never have known. Since they looked like good pals when I showed up. Later in the day, I confronted Mattie on his behavior with Meg. He looked at me sheepishly, and admitted to everything Meg told me. It actually was a teachable moment for two reasons. First, the lessons is that it is important to finish what you start, and second, that friends can disagree, but that is healthy, they can resolve it, and move on. I am happy Meg told me what happened so I could process it with Mattie.
Mattie, Jessie, and Jenny worked together on a Mother's day gift for me. Mattie had Jessie get his vase creation out of the hospital's kiln. Then Jenny and Jessie helped Mattie design his own tissue paper flowers to place in the vase. I had to wait in his room for the surprise. Here is how it was delivered to me!
Right: I had my eyes closed as my mom wheeled Mattie in to give me his surprise.
Left: Mattie and I holding his gift!
Right: Mattie was telling me about the flowers he made! He was very proud of his creation, and I am thrilled to have something special that Mattie made with his own hands.
Right: Mattie, Grammie, and Vicki with the special red clay vase created and designed by Mattie.
Mattie received pentamidine later this afternoon. This is an IV antibiotic that Mattie gets once a month to prevent pneumonia. While receiving this drug, he was playing with my mom. In addition, Kathleen and Haley (Mattie's nurses) came in every 15 minutes to take Mattie's vitals while on this medication. They enjoyed watching what Mattie was creating. Linda had a movie screening today for the kids, but Mattie was unable to go because he was receiving his IV antibiotics. Jenny was nice enough to bring Mattie pizza and candy, which made us all feel special and part of the movie event.
As the evening was unfolding, Peter arrived at the hospital and brought lots of activities for Mattie to do with him this weekend. Before I left the hospital, I bumped into Denise, our social worker. Denise and I discussed the difficult transition we will have as we move away from the PICU. We ONLY have one more chemo left? We are now into month TEN of this process, and though I am happy this will be behind me, I will deeply miss the support and wonderful HEM/ONC nurses who have helped me every step of the way through this harrowing ordeal. Sure as Denise said, I could go back and visit them once we are gone. But having moved homes several times in my life, I know that when you move things change. It is sometimes hard to go back. Needless to say, meeting these HEM/ONC nurses has been a life altering experience for me. In fact, when I left the PICU tonight, Kathleen (Mattie's nurse) came up to me to give me a hug. She was happy I was going home and getting a much deserved break. These personal connections have meant a great deal to me over these 10 months.
Peter is at the hospital tonight with Mattie, and I am home, going to attempt to relax. If that is possible. Though I am happy to be home, a part of me is at the hospital and hoping Peter and Mattie are having a good night together. For a Methotrexate update, Mattie's 24 hour blood Methotrexate level was 5.2. He must have a blood level of .1 or below to be discharged.
We would like to thank the Bires family for a wonderful dinner! Mattie loved the hotdog! We appreciate your continued support!
I want to end my posting tonight with a message from my friend Charlie. Charlie wrote, "I have no words to describe Thursday's blog. What a completely horrifying day. Having been through hallucinations caused by medication, I can tell you it is incredibly frightening. It is impossible for someone to comfort you because you are so certain of what you are seeing even though a small voice in the back of your mind may be trying to tell you what you see and hear is impossible. Being on the other side of this situation is no better; it is futile to attempt to get past the noise in the brain but you feel compelled to keep trying. I have great difficulty imagining anything harder for a mother of a small child to deal with. And then if anyone reading the blog needed a reminder of just how toxic chemotherapy is, we had a vivid example in front of us with the welts on your hands from dealing with the drug as Mattie was trying to clear it from his system. As you said, one of the worst things about cancer and the treatment is that it becomes all consuming; it takes over every piece of your life both waking and sleeping, tears away your privacy and personal space, intrudes on every conversation and irrevocably changes your life."
April 30, 2009
Thursday, April 30, 2009
Thursday, April 30, 2009 --- JUST SAY NO TO ATIVAN!
Quote of the day: "Energy and persistence conquer all things." ~ Benjamin Franklin
Wednesday night was a night to remember! At around 11:40pm, the fun began. Mattie started to vomit. However, it did not stop. He vomited intensely three times, at which point Erin (Mattie's great HEM/ONC nurse) went to get Mattie's break through anti-emetic medication, Ativan. In the past, Mattie has had a hard time with low dosages of Ativan. It would make him hyper, literally climbing all over his bed, and using it as a slide! But higher dosages of Ativan have worked for Mattie to help with nausea. In addition, to getting Ativan, Mattie also needed morphine to combat the pain he was feeling from the recasting. Within minutes of receiving Ativan, Mattie's personality began to change. Mattie became hyper, but in addition to the inordinate amount of activity, Mattie became psychotic. His speech was slurred, he was almost incoherent. He then began to hallucinate. He saw his toy cars flying through the air, he then saw his hotwheels cars transforming, and the real topper for the evening was the cars were talking to him. At one point Mattie said to Erin, "please get me my glasses, I can't see." We just looked at each other, Mattie doesn't wear glasses. Mattie's vision was being affected, which made movement for him downright dangerous. However, I had trouble at first keeping him quarentined to the bed. He wanted to get out of bed. At one point, I leaned my body on him to keep him in one place. I tried the hardest to get Mattie to relax and close his eyes. But resting was impossible. I found myself trying to talk with him and reason with him. Then I caught myself. How on Earth can you rationalize with someone who isn't mentally stable at the moment? So instead, I listened to his stories about cars flying, cars talking, and finally at around 2am, he wiped himself out. Now I have to also let you know that Mattie's bed was defective! The side rail that keeps him secure and in bed wasn't working. Perfect! This seemed like the icing on the cake. Could the night get worse? If you answered yes, you get a gold star.
If this wasn't bad enough, at 4am, I could hear Mattie stirring. He had to go to the bathroom. He was still NOT himself. He couldn't open his eyes, but he appeared to be moving his legs and getting out of bed to go to the bathroom. So I grabbed his urinal, and began to help him. Keep in mind I am VERY tired. So in one hand I have the urinal, and in the other, I had a light hold on Mattie. The next thing I knew, Mattie was going to the bathroom, but his head seemed like a 50 pound weight, and his head and upper torso were plummeting to the floor. Literally Mattie's head was seconds from smacking the floor. I fortunately caught him, but in the process, he went to the bathroom on himself and on my hands. Mattie had received Methotrexate on Wednesday from 6-10pm. So when he urinated, I could see the chemo being excreted in the urine. His urine is highlighter yellow, to match the color of Methotrexate. So needless to say I got chemo all over my hands. My main goal was to change Mattie out of his wet clothes. I did that, and safely put him back in bed. It was at that time I realized my hands were burning. I ran to the sink and started scrubbing the chemo off my hands, but I was developing quarter sized welts on my hands. I was in a panic, and decided to put cortizone cream all over my hands. Thank God, the welts went away and I did not get blisters on my skin. Needless to say, there was no possible way I could get up at 6:30am. I remained in bed until 8am, but then people were coming in and out of Mattie's room, so I knew I better get up and showered otherwise, I could forget it! After this horrible ordeal with Ativan, I have now made it clear, that we do not want Mattie to receive Ativan at all!
Needless to say, Mattie did not wake up early. Linda came in today and stayed with Mattie so I could go get hot tea. I made it to the first floor of the hospital and I then found that Linda left me a voice mail saying that Mattie was up and was crying for me. I never got my tea. But as usual, Linda did the right thing. When I got back to the room, Mattie wanted to go to the bathroom and wanted fresh clothes. So Linda helped me and Linda also made it her business to get Mattie a bed that worked with effective side rails. Linda never ceases to amaze me with what she can accomplish! We tried to feed Mattie some oatmeal, and that set off another bad reaction chain. Mattie started to feel nauseous again. The feeling led to screaming and crying and it did not stop. Fortunately Mattie's nurses ordered Vistaril (the infamous Vistaril, the anti-emetic/anti-histamine in National shortage). It took over 20 minutes for the Vistaril to take effect. But once it did, it made Mattie fall asleep for several hours.
Mattie slept through a visit with Jenny and Jessie (these wonderful art therapists are working with Mattie to help him recreate his Super Mattie Adventures book). Mattie also slept through a good portion of his visit from Meg today! While Mattie was sleeping, I went on campus to have lunch with my parents and Ellen (Charlotte's mom). We were all chatting and I made it through part of my lunch, when Jessie called me and said that Mattie needed me. I jumped up from lunch and headed back to Mattie's room. But I noticed two things today. The first is as I am getting more tired, I have little tolerance for those around me. I literally snapped at two people on the elevator in the hospital. When you are dealing with a trauma, it is almost incomprehensible to think that others around you can't understand or that their world hasn't stopped too. The second observation is I really can't participate in normal everyday conversation anymore. I naturally want to hear what others are going through, but I can't. I don't know and really can't handle hearing about what is going on in the "real" world, my world and ONLY world is Mattie and this horrible disease. It has become all consuming. I am sure to the outsider hearing such a thing this sounds completely irrational and unhealthy. But in order to help Mattie have a chance at life again, I feel this level of intensity is the only thing that works. Needless to say, it is a rather uncomfortable and frustrating experience to feel like you don't fit in, and there is nothing you can do about it, especially since you did not elect to be relegated to the cancer culture.
When I arrived back to the room, I could hear Mattie crying down the hallway. When I came back in, he grabbed a hold of me. The scary part is that Meg, Jenny, and Jessie all observed that when Mattie woke up he was disoriented and did not recognize them. I did not like hearing that at all. I found that Mattie looked very drugged and lethargic all day. Mattie fell back to sleep and literally I was getting concerned. My parents and I happened to see Dr. Abu-Ghosh. Dr. Abu-Ghosh is a patient and calming soul. She listened to my concerns about Mattie's level of disorientation. She then passed along the message to Dr. Synder, Mattie's doctor. Dr. Synder found me within minutes, and was very responsive. She told me that sometimes Methotrexate can affect the brain, and perhaps it was a good idea to wake Mattie up to find out just how non-responsive he was. I agreed with her precautions. What I have learned in all of this is ALWAYS expect the unexpected. Mattie has never had a negative reaction to Methotrexate, but I guess since this is our last round of Methotrexate, something was bound to happen based on our track record.
Dr. Synder was able to get Mattie awake, but it wasn't easy. Meg helped me during this time, and she also made Mattie more oatmeal because he said he was hungry. Mattie did eat this time, and is slowly pulling out of his stupor. But even tonight, his eyes do not look right and his pupils are still very dilated. He is now having a tantrum about his cast and his central line dressing itching. He is sticking a straw down through his cast, and he is crying at the moment. God give us strength!
Later this afternoon, Mattie played a pretend game with my parents, featuring their made up character, Captain Mattie. Mattie enjoyed it, but still wasn't himself. Mattie also enjoyed building magnetic cars that Charlotte gave him. Mattie loved it, and was happy to instruct us in the building process. When Peter arrived tonight, he took Mattie to the playroom, and they started to create dreamcatchers together. But Mattie was in a snappy and bad mood, and they headed back to the room rather quickly. We want to thank the Parker family for a lovely dinner. Mattie ate the entire grilled cheese, and he loved the Sponge Bob crackers.
As Mattie heads into Friday, Meg will be back with us, and I hope that things will be better. Mattie will also have physical therapy tomorrow with Anna. He just wasn't up to anything today. In the midst of all this craziness, Ann was a brave soul and e-mailed and even called to check in on Mattie and I several times today.
I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Wow, I am exhausted just reading Wednesday's blog. If we could just bottle some of Mattie's energy, we would not have an oil crisis and you would have a steady income stream. What a full day and of course it began by running the hurdles of admission one more time. I truly admire your ability to maintain your sense of humor in the face of the absurd situation at the hospital with regard to admissions. I love the pictures Mattie took of the straightening and recasting process; I am sure it helped him to feel more in control of another invasion of his personal space. I also loved the description of the exercise class; maybe Mattie wants to make a video of his exercise program to work out with later on. I am sure he can come up with a creative title for his show!"
Quote of the day: "Energy and persistence conquer all things." ~ Benjamin Franklin
Wednesday night was a night to remember! At around 11:40pm, the fun began. Mattie started to vomit. However, it did not stop. He vomited intensely three times, at which point Erin (Mattie's great HEM/ONC nurse) went to get Mattie's break through anti-emetic medication, Ativan. In the past, Mattie has had a hard time with low dosages of Ativan. It would make him hyper, literally climbing all over his bed, and using it as a slide! But higher dosages of Ativan have worked for Mattie to help with nausea. In addition, to getting Ativan, Mattie also needed morphine to combat the pain he was feeling from the recasting. Within minutes of receiving Ativan, Mattie's personality began to change. Mattie became hyper, but in addition to the inordinate amount of activity, Mattie became psychotic. His speech was slurred, he was almost incoherent. He then began to hallucinate. He saw his toy cars flying through the air, he then saw his hotwheels cars transforming, and the real topper for the evening was the cars were talking to him. At one point Mattie said to Erin, "please get me my glasses, I can't see." We just looked at each other, Mattie doesn't wear glasses. Mattie's vision was being affected, which made movement for him downright dangerous. However, I had trouble at first keeping him quarentined to the bed. He wanted to get out of bed. At one point, I leaned my body on him to keep him in one place. I tried the hardest to get Mattie to relax and close his eyes. But resting was impossible. I found myself trying to talk with him and reason with him. Then I caught myself. How on Earth can you rationalize with someone who isn't mentally stable at the moment? So instead, I listened to his stories about cars flying, cars talking, and finally at around 2am, he wiped himself out. Now I have to also let you know that Mattie's bed was defective! The side rail that keeps him secure and in bed wasn't working. Perfect! This seemed like the icing on the cake. Could the night get worse? If you answered yes, you get a gold star.
If this wasn't bad enough, at 4am, I could hear Mattie stirring. He had to go to the bathroom. He was still NOT himself. He couldn't open his eyes, but he appeared to be moving his legs and getting out of bed to go to the bathroom. So I grabbed his urinal, and began to help him. Keep in mind I am VERY tired. So in one hand I have the urinal, and in the other, I had a light hold on Mattie. The next thing I knew, Mattie was going to the bathroom, but his head seemed like a 50 pound weight, and his head and upper torso were plummeting to the floor. Literally Mattie's head was seconds from smacking the floor. I fortunately caught him, but in the process, he went to the bathroom on himself and on my hands. Mattie had received Methotrexate on Wednesday from 6-10pm. So when he urinated, I could see the chemo being excreted in the urine. His urine is highlighter yellow, to match the color of Methotrexate. So needless to say I got chemo all over my hands. My main goal was to change Mattie out of his wet clothes. I did that, and safely put him back in bed. It was at that time I realized my hands were burning. I ran to the sink and started scrubbing the chemo off my hands, but I was developing quarter sized welts on my hands. I was in a panic, and decided to put cortizone cream all over my hands. Thank God, the welts went away and I did not get blisters on my skin. Needless to say, there was no possible way I could get up at 6:30am. I remained in bed until 8am, but then people were coming in and out of Mattie's room, so I knew I better get up and showered otherwise, I could forget it! After this horrible ordeal with Ativan, I have now made it clear, that we do not want Mattie to receive Ativan at all!
Needless to say, Mattie did not wake up early. Linda came in today and stayed with Mattie so I could go get hot tea. I made it to the first floor of the hospital and I then found that Linda left me a voice mail saying that Mattie was up and was crying for me. I never got my tea. But as usual, Linda did the right thing. When I got back to the room, Mattie wanted to go to the bathroom and wanted fresh clothes. So Linda helped me and Linda also made it her business to get Mattie a bed that worked with effective side rails. Linda never ceases to amaze me with what she can accomplish! We tried to feed Mattie some oatmeal, and that set off another bad reaction chain. Mattie started to feel nauseous again. The feeling led to screaming and crying and it did not stop. Fortunately Mattie's nurses ordered Vistaril (the infamous Vistaril, the anti-emetic/anti-histamine in National shortage). It took over 20 minutes for the Vistaril to take effect. But once it did, it made Mattie fall asleep for several hours.
Mattie slept through a visit with Jenny and Jessie (these wonderful art therapists are working with Mattie to help him recreate his Super Mattie Adventures book). Mattie also slept through a good portion of his visit from Meg today! While Mattie was sleeping, I went on campus to have lunch with my parents and Ellen (Charlotte's mom). We were all chatting and I made it through part of my lunch, when Jessie called me and said that Mattie needed me. I jumped up from lunch and headed back to Mattie's room. But I noticed two things today. The first is as I am getting more tired, I have little tolerance for those around me. I literally snapped at two people on the elevator in the hospital. When you are dealing with a trauma, it is almost incomprehensible to think that others around you can't understand or that their world hasn't stopped too. The second observation is I really can't participate in normal everyday conversation anymore. I naturally want to hear what others are going through, but I can't. I don't know and really can't handle hearing about what is going on in the "real" world, my world and ONLY world is Mattie and this horrible disease. It has become all consuming. I am sure to the outsider hearing such a thing this sounds completely irrational and unhealthy. But in order to help Mattie have a chance at life again, I feel this level of intensity is the only thing that works. Needless to say, it is a rather uncomfortable and frustrating experience to feel like you don't fit in, and there is nothing you can do about it, especially since you did not elect to be relegated to the cancer culture.
When I arrived back to the room, I could hear Mattie crying down the hallway. When I came back in, he grabbed a hold of me. The scary part is that Meg, Jenny, and Jessie all observed that when Mattie woke up he was disoriented and did not recognize them. I did not like hearing that at all. I found that Mattie looked very drugged and lethargic all day. Mattie fell back to sleep and literally I was getting concerned. My parents and I happened to see Dr. Abu-Ghosh. Dr. Abu-Ghosh is a patient and calming soul. She listened to my concerns about Mattie's level of disorientation. She then passed along the message to Dr. Synder, Mattie's doctor. Dr. Synder found me within minutes, and was very responsive. She told me that sometimes Methotrexate can affect the brain, and perhaps it was a good idea to wake Mattie up to find out just how non-responsive he was. I agreed with her precautions. What I have learned in all of this is ALWAYS expect the unexpected. Mattie has never had a negative reaction to Methotrexate, but I guess since this is our last round of Methotrexate, something was bound to happen based on our track record.
Dr. Synder was able to get Mattie awake, but it wasn't easy. Meg helped me during this time, and she also made Mattie more oatmeal because he said he was hungry. Mattie did eat this time, and is slowly pulling out of his stupor. But even tonight, his eyes do not look right and his pupils are still very dilated. He is now having a tantrum about his cast and his central line dressing itching. He is sticking a straw down through his cast, and he is crying at the moment. God give us strength!
Later this afternoon, Mattie played a pretend game with my parents, featuring their made up character, Captain Mattie. Mattie enjoyed it, but still wasn't himself. Mattie also enjoyed building magnetic cars that Charlotte gave him. Mattie loved it, and was happy to instruct us in the building process. When Peter arrived tonight, he took Mattie to the playroom, and they started to create dreamcatchers together. But Mattie was in a snappy and bad mood, and they headed back to the room rather quickly. We want to thank the Parker family for a lovely dinner. Mattie ate the entire grilled cheese, and he loved the Sponge Bob crackers.
As Mattie heads into Friday, Meg will be back with us, and I hope that things will be better. Mattie will also have physical therapy tomorrow with Anna. He just wasn't up to anything today. In the midst of all this craziness, Ann was a brave soul and e-mailed and even called to check in on Mattie and I several times today.
I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Wow, I am exhausted just reading Wednesday's blog. If we could just bottle some of Mattie's energy, we would not have an oil crisis and you would have a steady income stream. What a full day and of course it began by running the hurdles of admission one more time. I truly admire your ability to maintain your sense of humor in the face of the absurd situation at the hospital with regard to admissions. I love the pictures Mattie took of the straightening and recasting process; I am sure it helped him to feel more in control of another invasion of his personal space. I also loved the description of the exercise class; maybe Mattie wants to make a video of his exercise program to work out with later on. I am sure he can come up with a creative title for his show!"
April 29, 2009
Wednesday, April 29, 2009
Wednesday, April 29, 2009
Quote of the day: "The highest form of wisdom is kindness." ~ The Talmud
Left: I took a picture of Mattie and Bob as the process was starting. Bob is holding a cast saw. It doesn't hurt per se, but it makes quite a loud sound. Like a very powerful vacuum.
Right: Linda holding the wedge removed from Mattie's cast.
Left: The recasting located by the knee.
We want to thank Lana (one of Mattie's preschool teachers) for delivering us a beautiful home cooked meal tonight. Thank you for thinking of all of us. Mattie devoured the hot dog and fresh corn! He also loved his new batch of his favorite cookies. Thank you Lana for a very thoughtful and tasty meal!
Left: A picture of Mattie and Nancy moving their legs together.
Mattie was a live wire tonight. After all the exercises were complete, then Erin, Mattie's wonderful HEM/ONC nurse, was in playing ghost games with us. But it hasn't been an easy night for us. It is 11:40pm, and Mattie just vomited. He is on ativan for break through nausea and also is on morphine because his knee is bothering him from recasting. So for most of us we would be very relaxed and sleeping from such medications, but NOT Mattie. He hasn't given myself or Erin a minute's peace. The irony is today I felt very tired and my patience with Mattie was low. He can be very demanding and sassy at times, and normally I can reason with him, but today I wasn't in the mood, and we had our share of blow ups together. I think the ironic part is I had many people today comment on how nice I looked. Maybe because I was in a bright color, in comparison to my usual dull hospital uniform. Of course it was nice to hear that I looked nice, but don't be confused by looks. I assure you looks are deceiving!
Quote of the day: "The highest form of wisdom is kindness." ~ The Talmud
I would like to start off tonight's blog with a lovely quote I received today from Mattie's art teacher, Debbie Pollak. This is how she describes me: "The tenacity of a Navy Seal, the patience of a Polar Bear, and the wit of Groucho Marx." I enjoyed Debbie's quote a lot, and I continue to reflect upon it tonight. To make it through this ordeal, I think Debbie may be onto something, you do need tenacity, a whole lot of patience, and wit!
My parents and I took Mattie to clinic this morning. We arrived at around 11:30am. After vitals and a blood draw, Mattie spent the rest of the time playing with Jenny, Jessie, and my mom. In fact, Mattie glazed a vase that he made a few weeks back on the pottery wheel, and then created a wonderful story. I was busy running around trying to get Mattie admitted to the hospital, that I did not see the story unfolding. But Jenny gave Mattie a composition type book with blank pages. He did ALL the illustrations and Jenny helped him print out the words. The book tells the story of SUPER MATTIE. It is actually a wonderful and creative story about how Super Mattie saves a town from a mean and terrorizing monster. Mattie was very proud of his creation today, and has shown it to Whitney and even Jerry and Nancy this evening. In fact, tonight, Mattie and Nancy brainstormed selling Mattie's book with the proceeds going to benefit the art therapy program at the hospital. It was a riot, because Mattie started recruiting nurses to buy his book!
Left: A picture of Mattie holding his first book, The Adventures of Super Mattie, surrounded by (left to right) Whitney, Grammie, Jenny, and Jessie!
When I went down to register Mattie into the hospital today, it was a royal experience. There were many people waiting to get admitted, and some of us noticed they were taking folks out of numerical order (since you are assigned a number in the waiting area and they process you in turn). I went to address this issue since several other patients were upset and were waiting for a long time. One woman was there with her 96 year old mother. So I advocated for myself and two other people in the waiting area. I tried to lighten the mood with the others waiting, so when the admissions person came out, and started calling out a number, I turned it into a BINGO game. Needless to say, I had the woman next to me, with the 96 year old mother, laughing. When it was finally my turn to register Mattie, I walked in, and the man behind the counter started going into his talk about who he was and what he was going to do. But before he could start talking, he took one look at me, and I said, "Dennis, I already know who you are." After all, why wouldn't I? I feel like this is my community, I am here almost every week!
When I arrived back in clinic, Whitney had arrived. I thought Whitney's last week with us was last week, but it turned out that she is in training this week for her full time job, so she was able to spend part of the afternoon with Mattie. Whitney was very helpful, and she assisted me as I brought Mattie up the PICU. She played with him, read his Super Mattie story several times, and played several rounds of the board game, Life. In the game of Life today, Mattie landed up with 24 children. Wow!
As 5pm approached, Dr. Bob came to visit Mattie to rewedge his cast. Mattie will wear the cast for another week, and then have it permanently removed next week. I was fortunate enough to have Linda and Whitney with me, to help distract and support Mattie. Mattie was premedicated with an anti-anxiety medication, which I personally feel is no longer effective for Mattie. In any case, Mattie was a trooper, because it is painful to get your muscles stretched when they have been frozen for many months. Mattie did cry and was in pain, but as soon as Bob straightened out the leg, Mattie did calm down. But what helped to distract Mattie was my camera. He grabbed a hold of it and took photos of Bob sawing through his old cast and the wedging process. So I will let the pictures speak for themselves!
Left: I took a picture of Mattie and Bob as the process was starting. Bob is holding a cast saw. It doesn't hurt per se, but it makes quite a loud sound. Like a very powerful vacuum.Right: Mattie snapped a close up of Bob with the saw in motion. I personally LOVE this shot! Look at Bob's eyes, to me Mattie captured a great picture ---the look of precision and concentration!
Left: Mattie snapped a picture of Bob as he was using this metal plier type device to remove the orange slice wedge that he made through Mattie's old cast.
Right: Linda holding the wedge removed from Mattie's cast.
Once the wedge was removed from the cast, Bob manipulated Mattie's leg so that his knee was completely straight. Once straightened (which was the painful part), Bob then recasted just that portion by the knee. Mattie snapped a picture of this final step!
Left: The recasting located by the knee.Once Bob was finished, my parents and Whitney signed Mattie's cast by the knee. In addition, the running joke is that every time Katie (one of Mattie's wonderful HEM/ONC nurses) signs Mattie's cast, Bob cuts it off. So today she signed Mattie's cast for the third time. We all got a good chuckle out of it!
Right: Whitney signing the cast!
We want to thank Lana (one of Mattie's preschool teachers) for delivering us a beautiful home cooked meal tonight. Thank you for thinking of all of us. Mattie devoured the hot dog and fresh corn! He also loved his new batch of his favorite cookies. Thank you Lana for a very thoughtful and tasty meal!My parents watched the movie, Chitty Chitty Bang Bang with Mattie this evening. It is a long movie, and while the movie was taking place, Peter arrived from work, and with him came all our room items. So I unpacked the room, and then sent Peter home for the night. As Peter was leaving, Jerry and Nancy, our favorite musical volunteers arrived. Jerry and Nancy played Name that Tune with Mattie. The contest was to see if Mattie could guess all 12 songs that Jerry played. If Mattie guessed them correctly, he would win a prize! Jerry and I worked this out before tonight. I e-mailed Jerry back and forth a list of songs that Mattie would know. As Jerry played the songs tonight, Mattie thought he recognized the song, but actually had a different song in mind. So Jerry did not skip a beat, he would change the song in mid stride. We all got a good laugh at this. But Mattie loved how Jerry and Nancy were hamming it up, and of course Mattie loves to win. You can see Mattie pictured with Jerry and Nancy, as he received his prize. When Mattie opened his prize, he received a hat, and on the hat it was written, Piano Man. We call Jerry the Piano Man, so this was a special hat to receive. Mattie is the Piano Man, Jr., because Jerry knows that Mattie is learning to play.
The night did not end here. Mattie literally popped up out of his chair and started to lead us in exercises. Literally he was recruiting nurses from the floor into the room. Mattie was moving his body, arms, and legs. Dr. Bob would have been VERY proud of Mattie. Mattie was also a task master. He made all of us get a work out. No one was allowed to sit. At one point there were six adults in Mattie's room exercising!
Left: A picture of Mattie and Nancy moving their legs together.Right: Mattie leading us in neck exercises!
Left: Mattie showing the crowd how he can throw his legs over his head!
Mattie was a live wire tonight. After all the exercises were complete, then Erin, Mattie's wonderful HEM/ONC nurse, was in playing ghost games with us. But it hasn't been an easy night for us. It is 11:40pm, and Mattie just vomited. He is on ativan for break through nausea and also is on morphine because his knee is bothering him from recasting. So for most of us we would be very relaxed and sleeping from such medications, but NOT Mattie. He hasn't given myself or Erin a minute's peace. The irony is today I felt very tired and my patience with Mattie was low. He can be very demanding and sassy at times, and normally I can reason with him, but today I wasn't in the mood, and we had our share of blow ups together. I think the ironic part is I had many people today comment on how nice I looked. Maybe because I was in a bright color, in comparison to my usual dull hospital uniform. Of course it was nice to hear that I looked nice, but don't be confused by looks. I assure you looks are deceiving!
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As usual, I see two sides of this posting. One is the relief as you see the end of the chemo in sight and the other is the anxiety of the upcoming scans and lung surgery. I also see how this disease takes over every moment, every corner of your life in a way that many of us don't realize. Getting out of the hospital and home to familiar spaces and then to be on call every moment as playmate, transporter, nurse is an incredible challenge when put on top of what you have already done. Your exhaustion comes through very clearly. I know that the scans and the surgery have to be scheduled, I am just sorry that the chance to get this done came at the expense of an opportunity to get some much needed rest."
April 28, 2009
Tuesday, April 28, 2009
Tuesday, April 28, 2009
Quote of the day: "If you don't like something change it; if you can't change it, change the way you think about it." ~ Mary Engelbreit
A quick walk update! We are thrilled to report that we have about 200 people registered for the walk! We can't thank you all enough for your energy and support behind the walk and I appreciate you passing along our website to friends and family. I am receiving some of the nicest e-mails from people I have never even met who are behind this event and committed to supporting Mattie and my family. We deeply THANK YOU!
It was my hope that I could sleep in this morning, since Mattie typically doesn't wake up these days until 10:30 of 11am. Mattie had me up and down every couple of hours last night to use the bathroom. I know Mattie's doctor spoke to me about hydrating Mattie during the day, but I gave that a lot of thought, and realized this physically wouldn't be practical for me. There is no way I can balance Mattie, carrying him around, and the IV pole. Those of you who know Mattie, even with a cast on his leg, know that he rarely sits still. Case in point, today he had me carrying him up and down the stairs several points during the day, because he gets tired playing in one place. It is hard enough transporting him, and I know my limitations moving an IV pole around in my home. So for the moment, I feel it is safer to give Mattie hydration at night, despite the fact that it comes at a huge cost to Peter or I.
Mattie kept me hopping today. He was visited by JJ (our resident Jack Russell Terrier). We learned today that JJ shares Mattie's affection for cheese. Mattie was into non-stop play. I tried to keep up, but frankly I have very little to give at this point, and knowing that I have so much still to help Mattie with as he has another major surgery in June, I feel the great need to conserve my energy. Mattie and I played with his suspension bridge, we did puzzles, we read books, we played with his trains, we made up some games, and even watched a video. This afternoon, I felt like I had to lie down, so Mattie and I went to my bed, and he watched a video, and I attempted to close my eyes. But that did not last long because the hospital called me to schedule Mattie's May and final scans. After that call, shutting off was no longer an option for me.
Mattie refused to go for a walk today or leave our home. Fresh air did not interest him in the least, so it made for a very LONG and taxing day at home. When Ann called me in the afternoon, I gave her a mouthful about my day, and we joked about me using a number to describe my day, similar to the scale that hospitals use to manage pain. But true to form, Mattie wouldn't allow me to talk for very long on the phone.
We want to thank JP, our neighbor, for giving Mattie his favorite pizza and pasta last night. It made for a wonderful lunch today. When Peter came home this evening, Mattie changed his mind and decided to go outside for a walk with him. Mattie waited with Peter until he saw my parents coming to our front door. Mattie was very excited to have, as Peter and I call it, "fresh blood," to talk and play with. Mattie was super animated tonight, and even joined us at the dinner table and actually ate. We can't thank Beth E. enough for an incredible dinner from the Cheesecake Factory as she even got food for my parents. Mattie loved it and my parents appreciated you including them. After a long travel day from Los Angeles, they really loved the opportunity to eat with us and catch up. Mattie made some gifts for my parents last night out of beads, and this morning I helped Mattie complete the project. So he was very excited to see their reaction and to also play with them after dinner.
As we head into Wednesday, I need to pack up things tonight because Mattie is getting admitted for his FINAL dosage of Methotrexate. Peter and I have decided that I would stay in the hospital Wednesday and Thursday night with Mattie, and then Peter would stay on Friday and potentially Saturday night. We did learn today that Mattie's lung surgery is scheduled at Georgetown Hospital on June 15. Peter and I are still assessing our surgical options, but at the moment, we felt it was important to get on the surgical schedule, because as soon as Mattie's body is able to qualify for surgery, he should have it. We do not want these lesions lingering in his body for any longer than possible.
I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "Wow, another really long day in the clinic. Thank goodness for the help provided by Jessie and Jenny; they certainly kept things fun for Mattie. Mattie continues to be full of surprises when it comes to reactions to treatment; it is a good thing you are so sensitive and observant to his physical and emotional state so that you can catch these reactions early on. Thinking and planning ahead for the central line post surgery is also a really good thing to do; I feel for those who do not have a parent or caregiver who is as active an advocate as you clearly are."
Quote of the day: "If you don't like something change it; if you can't change it, change the way you think about it." ~ Mary Engelbreit
A quick walk update! We are thrilled to report that we have about 200 people registered for the walk! We can't thank you all enough for your energy and support behind the walk and I appreciate you passing along our website to friends and family. I am receiving some of the nicest e-mails from people I have never even met who are behind this event and committed to supporting Mattie and my family. We deeply THANK YOU!
It was my hope that I could sleep in this morning, since Mattie typically doesn't wake up these days until 10:30 of 11am. Mattie had me up and down every couple of hours last night to use the bathroom. I know Mattie's doctor spoke to me about hydrating Mattie during the day, but I gave that a lot of thought, and realized this physically wouldn't be practical for me. There is no way I can balance Mattie, carrying him around, and the IV pole. Those of you who know Mattie, even with a cast on his leg, know that he rarely sits still. Case in point, today he had me carrying him up and down the stairs several points during the day, because he gets tired playing in one place. It is hard enough transporting him, and I know my limitations moving an IV pole around in my home. So for the moment, I feel it is safer to give Mattie hydration at night, despite the fact that it comes at a huge cost to Peter or I.
Mattie kept me hopping today. He was visited by JJ (our resident Jack Russell Terrier). We learned today that JJ shares Mattie's affection for cheese. Mattie was into non-stop play. I tried to keep up, but frankly I have very little to give at this point, and knowing that I have so much still to help Mattie with as he has another major surgery in June, I feel the great need to conserve my energy. Mattie and I played with his suspension bridge, we did puzzles, we read books, we played with his trains, we made up some games, and even watched a video. This afternoon, I felt like I had to lie down, so Mattie and I went to my bed, and he watched a video, and I attempted to close my eyes. But that did not last long because the hospital called me to schedule Mattie's May and final scans. After that call, shutting off was no longer an option for me.
Mattie refused to go for a walk today or leave our home. Fresh air did not interest him in the least, so it made for a very LONG and taxing day at home. When Ann called me in the afternoon, I gave her a mouthful about my day, and we joked about me using a number to describe my day, similar to the scale that hospitals use to manage pain. But true to form, Mattie wouldn't allow me to talk for very long on the phone.
We want to thank JP, our neighbor, for giving Mattie his favorite pizza and pasta last night. It made for a wonderful lunch today. When Peter came home this evening, Mattie changed his mind and decided to go outside for a walk with him. Mattie waited with Peter until he saw my parents coming to our front door. Mattie was very excited to have, as Peter and I call it, "fresh blood," to talk and play with. Mattie was super animated tonight, and even joined us at the dinner table and actually ate. We can't thank Beth E. enough for an incredible dinner from the Cheesecake Factory as she even got food for my parents. Mattie loved it and my parents appreciated you including them. After a long travel day from Los Angeles, they really loved the opportunity to eat with us and catch up. Mattie made some gifts for my parents last night out of beads, and this morning I helped Mattie complete the project. So he was very excited to see their reaction and to also play with them after dinner.
As we head into Wednesday, I need to pack up things tonight because Mattie is getting admitted for his FINAL dosage of Methotrexate. Peter and I have decided that I would stay in the hospital Wednesday and Thursday night with Mattie, and then Peter would stay on Friday and potentially Saturday night. We did learn today that Mattie's lung surgery is scheduled at Georgetown Hospital on June 15. Peter and I are still assessing our surgical options, but at the moment, we felt it was important to get on the surgical schedule, because as soon as Mattie's body is able to qualify for surgery, he should have it. We do not want these lesions lingering in his body for any longer than possible.
I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "Wow, another really long day in the clinic. Thank goodness for the help provided by Jessie and Jenny; they certainly kept things fun for Mattie. Mattie continues to be full of surprises when it comes to reactions to treatment; it is a good thing you are so sensitive and observant to his physical and emotional state so that you can catch these reactions early on. Thinking and planning ahead for the central line post surgery is also a really good thing to do; I feel for those who do not have a parent or caregiver who is as active an advocate as you clearly are."
April 27, 2009
Monday, April 27, 2009
Monday, April 27, 2009
Quote of the day: "Life is a continuous exercise in creative problem solving." ~ Michael J. Gelb
We all had an interesting night of sleep on Sunday night. It has been 90+ degrees here in Washington, DC, and our home has a way of absorbing the heat. Our complex hasn't turned on the air conditioning yet, since it is only April. However, it was almost impossible to sleep inside an oven last night! Despite getting Mattie into bed at 11pm and attempting to help him to unwind with bedtime stories, he was still up until 1am. His sleep and wake cycles have truly been affected by living life in a PICU. I assume eventually we will get him back on track, but in the mean time, it makes for very long days. Mattie was up multiple times during the night to use the bathroom, so I felt like the walking wounded today. I spoke with Dr. Synder, Mattie's doctor, about the IV hydration at night. As a recap Mattie needs IV hydration because he has an electrolyte imbalance as a result of intense chemotherapy. Dr. Synder told me today that if I wanted to try to give Mattie IV hydration by day when we are home, then he wouldn't need to receive it at night. Since Mattie and I spend our days at home when he doesn't have a clinic appointment, I may try this to see if it makes life any easier while we are home at night. We all deserve a night or two of uninterrupted sleep.
Mattie arrived at clinic today around 11:45am and we did not get home until around 6pm. So it was another full day. While in clinic I had the opportunity to talk with Dr. Synder about Mattie's central line. I have been concerned that after chemotherapy is over, and with the lung surgery, that Mattie's central line (which is a long, hollow tube made of soft, rubber-like material called silicone, with an opening called a lumen. This catheter is commonly referred to as a central venous catheter because it is inserted into the large vein leading directly into the heart) was going to be removed. This would be a huge problem, because how would Mattie receive his MTP-PE each week through September, have blood draws, and get IV fluids without it (sure he could have an IV placed in his arm each week, which involves a needle, but Mattie is very scared of needles)? Dr. Synder understood my concerns and this is something Peter and I will need to discuss with Mattie's lung surgeon. What was determined today is that Mattie will head back to the clinic on Wednesday to be admitted to the hospital for a Methotrexate infusion. We kept to this aggressive schedule, because our goal is for Mattie to be healthy and present for his walk. Mattie's last round of chemo will take place on the week of May 11, after the walk.
Mattie had a good time playing with Jessie today. They started to create a shark and a whole set for the shark to play in, however, while they were playing Mattie was receiving MTP-PE. Typically Mattie has a reaction 45 minutes to an hour post-MTP infusion. But today it did not take that long. I would say within minutes of the hour long infusion, Mattie started to shut down. He started to put his head on his wheelchair. He was fighting falling asleep, and told Jessie that it was really his shark (sitting in his lap) that was falling asleep and not really him. But Jessie and I knew better. We wheeled Mattie into a clinic room, and I tucked him into bed. Mattie literally took over a two hour long nap. He was asleep the whole time and during which time he developed a low grade fever. Mattie had the same reaction to MTP-PE last Monday. The fever was a first for Mattie last week, but this week Mattie repeated the same reaction. While Mattie was sleeping Jenny and Jessie came in to visit with me. They watched Mattie for a little bit, while I went to get hot tea. The clinic was its usual state of COLD. Thankfully I always bring jackets and a blanket for Mattie. We needed all these items this afternoon. I truly appreciate Jenny and Jessie's support, especially when the day in the clinic goes on forever. The irony is, I rely heavily on Jenny and Jessie while in clinic. The climate in the clinic is different from the PICU where I have all our HEM/ONC nurses who look out for us. This is an amazing group of nurses, and it is hard to replicate their compassion and dedication. So while in clinic, I feel a bit more isolated, and when in doubt I always know that Jenny and Jessie are there to assist me.
When Mattie and I got home, we set up a few fans in our living room, because it was down right oppressive inside. We had two temperature extremes today between the clinic and our home. Mattie and I played with his suspension bridge, and then Peter came home from work, and we all had a nice dinner together thanks to the Keefe family. Thank you Debbie for the wonderful flank steak and asparagus. I love the fruit too! Mattie ate the grilled hot dog too. Thank you for sharing what you had for dinner with us, it was like we were part of your family tonight. I also want to thank Peter for another beautiful letter. His letters mean a lot to me.
Up ahead tonight, Peter and I have a central line dressing change to perform. We just did not have the energy to undertake that on Sunday. Mattie and I have an unstructured day tomorrow and then in the evening we will see my parents who are arriving from California.
I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "Sunday's blog seems to have a duality to it. On first read it is pretty positive with only two administrations of chemotherapy to go but there is the chest surgery yet to face and then the long term wait and see with ongoing scans. It feels like wistfulness in the writing for the time that was "lost" in the blur of treatment. One moment all was well with Mattie taking tennis lessons and the next you were in another "world" of tests, scans, treatments, consults, etc. Now almost a year has gone and there is little sense of where except for the markers of things missed: a year of school, a new class of graduates, etc. How and when do you make the transition back to that world? I don't know, but I suspect each family's passage is different and I hope you will allow us to accompany you on that journey as well."
Quote of the day: "Life is a continuous exercise in creative problem solving." ~ Michael J. Gelb
We all had an interesting night of sleep on Sunday night. It has been 90+ degrees here in Washington, DC, and our home has a way of absorbing the heat. Our complex hasn't turned on the air conditioning yet, since it is only April. However, it was almost impossible to sleep inside an oven last night! Despite getting Mattie into bed at 11pm and attempting to help him to unwind with bedtime stories, he was still up until 1am. His sleep and wake cycles have truly been affected by living life in a PICU. I assume eventually we will get him back on track, but in the mean time, it makes for very long days. Mattie was up multiple times during the night to use the bathroom, so I felt like the walking wounded today. I spoke with Dr. Synder, Mattie's doctor, about the IV hydration at night. As a recap Mattie needs IV hydration because he has an electrolyte imbalance as a result of intense chemotherapy. Dr. Synder told me today that if I wanted to try to give Mattie IV hydration by day when we are home, then he wouldn't need to receive it at night. Since Mattie and I spend our days at home when he doesn't have a clinic appointment, I may try this to see if it makes life any easier while we are home at night. We all deserve a night or two of uninterrupted sleep.
Mattie arrived at clinic today around 11:45am and we did not get home until around 6pm. So it was another full day. While in clinic I had the opportunity to talk with Dr. Synder about Mattie's central line. I have been concerned that after chemotherapy is over, and with the lung surgery, that Mattie's central line (which is a long, hollow tube made of soft, rubber-like material called silicone, with an opening called a lumen. This catheter is commonly referred to as a central venous catheter because it is inserted into the large vein leading directly into the heart) was going to be removed. This would be a huge problem, because how would Mattie receive his MTP-PE each week through September, have blood draws, and get IV fluids without it (sure he could have an IV placed in his arm each week, which involves a needle, but Mattie is very scared of needles)? Dr. Synder understood my concerns and this is something Peter and I will need to discuss with Mattie's lung surgeon. What was determined today is that Mattie will head back to the clinic on Wednesday to be admitted to the hospital for a Methotrexate infusion. We kept to this aggressive schedule, because our goal is for Mattie to be healthy and present for his walk. Mattie's last round of chemo will take place on the week of May 11, after the walk.
Mattie had a good time playing with Jessie today. They started to create a shark and a whole set for the shark to play in, however, while they were playing Mattie was receiving MTP-PE. Typically Mattie has a reaction 45 minutes to an hour post-MTP infusion. But today it did not take that long. I would say within minutes of the hour long infusion, Mattie started to shut down. He started to put his head on his wheelchair. He was fighting falling asleep, and told Jessie that it was really his shark (sitting in his lap) that was falling asleep and not really him. But Jessie and I knew better. We wheeled Mattie into a clinic room, and I tucked him into bed. Mattie literally took over a two hour long nap. He was asleep the whole time and during which time he developed a low grade fever. Mattie had the same reaction to MTP-PE last Monday. The fever was a first for Mattie last week, but this week Mattie repeated the same reaction. While Mattie was sleeping Jenny and Jessie came in to visit with me. They watched Mattie for a little bit, while I went to get hot tea. The clinic was its usual state of COLD. Thankfully I always bring jackets and a blanket for Mattie. We needed all these items this afternoon. I truly appreciate Jenny and Jessie's support, especially when the day in the clinic goes on forever. The irony is, I rely heavily on Jenny and Jessie while in clinic. The climate in the clinic is different from the PICU where I have all our HEM/ONC nurses who look out for us. This is an amazing group of nurses, and it is hard to replicate their compassion and dedication. So while in clinic, I feel a bit more isolated, and when in doubt I always know that Jenny and Jessie are there to assist me.
When Mattie and I got home, we set up a few fans in our living room, because it was down right oppressive inside. We had two temperature extremes today between the clinic and our home. Mattie and I played with his suspension bridge, and then Peter came home from work, and we all had a nice dinner together thanks to the Keefe family. Thank you Debbie for the wonderful flank steak and asparagus. I love the fruit too! Mattie ate the grilled hot dog too. Thank you for sharing what you had for dinner with us, it was like we were part of your family tonight. I also want to thank Peter for another beautiful letter. His letters mean a lot to me.
Up ahead tonight, Peter and I have a central line dressing change to perform. We just did not have the energy to undertake that on Sunday. Mattie and I have an unstructured day tomorrow and then in the evening we will see my parents who are arriving from California.
I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "Sunday's blog seems to have a duality to it. On first read it is pretty positive with only two administrations of chemotherapy to go but there is the chest surgery yet to face and then the long term wait and see with ongoing scans. It feels like wistfulness in the writing for the time that was "lost" in the blur of treatment. One moment all was well with Mattie taking tennis lessons and the next you were in another "world" of tests, scans, treatments, consults, etc. Now almost a year has gone and there is little sense of where except for the markers of things missed: a year of school, a new class of graduates, etc. How and when do you make the transition back to that world? I don't know, but I suspect each family's passage is different and I hope you will allow us to accompany you on that journey as well."
April 26, 2009
Sunday, April 26, 2009
Sunday, April 26, 2009
Quote of the day: "It is not always by plugging away at a difficulty and sticking at it that one overcomes it; but, rather, often by working on the one next to it. Certain people and certain things require to be approached on an angle." ~ Matthew Arnold
As many of you know, Mattie's March website was launched about a week ago. In that amount of time, we have had about 150 people register for the walk and for those unable to attend, we thank you for making donations to Mattie's fund. We are very grateful for this incredible support and for the difference you are making in my family's life.
Mattie enjoyed the gifts his nurse, Ellen, gave him last night. Ellen was one of the first nurses we met back in August. Ellen is extremely competent, an amazing advocate for her patients, and very compassionate. Peter and I fondly remember that Ellen was the first nurse that Mattie hugged. In September, Mattie was having a rough time with chemo, and when Ellen entered the room, Mattie ran toward her. We thought at first he was running up to her to hit her, and even Ellen prepared herself for the worst. However, to our surprise, he gave Ellen a hug. This is a story we reflect upon often! Ellen has two boys of her own and her husband was stationed in Iraq for over a year.
On Saturday night, Mattie was up coloring using the Crayola Color Explosion book that Ellen got him. Ellen even joined Mattie for a little while coloring. Mattie and Peter also built a model police car together before the night was over. Mattie finally went to bed at 1am. You can see a picture of Mattie and Ellen together, and also a picture of Mattie with his model car.
Peter and Mattie had a very busy day together. They spent the majority of the day in the childlife playroom. We are thankful that Linda found a way to keep this room open on the weekends. It makes a huge difference.
Mattie was examined today by Dr. Gonzales in the childlife playroom. Normally doctors are not allowed in the playroom, but either Mattie had to go back to his room for an exam, or invite Dr. Gonzales into the playroom. He went with the latter. Dr. Gonzales also assessed Mattie's range of motion with his left arm. Needless to say, everything Dr. Gonzales had in her pockets were removed by "Sam," which is the name Dr. Bob gave to Mattie's left arm.
Peter and Mattie spent a good part of the day designing a wonderful suspension bridge. In fact, when I arrived at the hospital, I was amazed by what I saw. Mattie cleared Methotrexate in record speed. We are told by Mattie's nurses that this is not unusual as we get to the end of Mattie's treatment. His body gets used to Methotrexate, and therefore, can flush it out easier. At 24 hours, Mattie's blood Methotrexate level was 3.33. A record low, so Dr. Gonzales started to prepare us for a Sunday discharge. She was right. By 4pm today, Mattie's Methotrexate level was .07, and his level must be .1 or below to be discharged. I arrived at the hospital at 4:15pm, to help Peter pack up the room and move out. However, to my surprise, Peter had already packed up and things were ready to go. While Peter was loading the car, Mattie and I walked around the PICU, talked to the nurses, and even went to feed Linda's fish. Mattie was happy to be going home.
We return to the Lombardi Clinic on Monday for a full day, including an infusion of MTP-PE. It feels like we never left the hospital, and I believe Mattie will go back in-patient on Wednesday for the next round of Methotrexate. Mattie ONLY has two more rounds of chemo left. The infusion coming up on Wednesday, and his last one scheduled for the week of May 11. In some ways it is hard to believe that almost 10 months have passed since we started. In fact, the 10 months are a blur, and the only way I put this time period into context is that I know school will be finishing up for Mattie's friends, there is a GW graduation coming up, and the weather is getting warm again. Needless to say, there are many emotions wrapped around this last chemo date. Certainly it should be a happy occasion, but instead we have Mattie's lung surgery looming over us, and then of course the moment that every cancer patient dreads, the wait and see game. Living from one scan to the next, hoping and praying nothing is revealed.
When Mattie arrived home, he happily played with his suspension bridge that he built. I think it is an impressive structure, which has now joined his train village in the middle of our living room! Mattie also had a visit from JJ, our resident Jack Russell Terrier. I think JJ missed Mattie while he was in the hospital! We had a nice dinner together thanks to Kathie, Mattie's occupational therapist. Thanks Kathie for the homemade lasagna, fresh vegetables, and wonderful strawberries!
I end tonight's posting with a message from my friend Charlie. Charlie wrote, "I am really glad you got some sleep. I do wish you could spend 24 hours in bed at this point to catch up on some of the sleep that you've missed rather than having to run around and do errands but I know that is not practical. Maybe once your parents are here, you can take a little more time to rest. I really worry about you. Sounds like Mattie had a full day on Saturday with the company (visit from Brandon and the medical staff) and the play. I am so glad that you got to see the play on video even though you were not there. The prop was certainly terrific and I am sure the actors were just as special if not more so. What Dr Bob said about the wrist makes perfect sense; two bones, two growth plates, remove one and the other keeps going so we have an uneven growth pattern. Although it will take surgery to fix it, realize that it is not life threatening, could not be fixed sooner even if identified by you, and that this happens to children who are not fighting cancer as well. When you get to the point of this surgery it will mean that the finish line is in sight and that Mattie's chemo and chest surgery are done and that he is on the road to recovery. Look at it as a last marker on the road to wellness."
Quote of the day: "It is not always by plugging away at a difficulty and sticking at it that one overcomes it; but, rather, often by working on the one next to it. Certain people and certain things require to be approached on an angle." ~ Matthew Arnold
As many of you know, Mattie's March website was launched about a week ago. In that amount of time, we have had about 150 people register for the walk and for those unable to attend, we thank you for making donations to Mattie's fund. We are very grateful for this incredible support and for the difference you are making in my family's life.
Mattie enjoyed the gifts his nurse, Ellen, gave him last night. Ellen was one of the first nurses we met back in August. Ellen is extremely competent, an amazing advocate for her patients, and very compassionate. Peter and I fondly remember that Ellen was the first nurse that Mattie hugged. In September, Mattie was having a rough time with chemo, and when Ellen entered the room, Mattie ran toward her. We thought at first he was running up to her to hit her, and even Ellen prepared herself for the worst. However, to our surprise, he gave Ellen a hug. This is a story we reflect upon often! Ellen has two boys of her own and her husband was stationed in Iraq for over a year.
On Saturday night, Mattie was up coloring using the Crayola Color Explosion book that Ellen got him. Ellen even joined Mattie for a little while coloring. Mattie and Peter also built a model police car together before the night was over. Mattie finally went to bed at 1am. You can see a picture of Mattie and Ellen together, and also a picture of Mattie with his model car.Peter and Mattie had a very busy day together. They spent the majority of the day in the childlife playroom. We are thankful that Linda found a way to keep this room open on the weekends. It makes a huge difference.
Mattie was examined today by Dr. Gonzales in the childlife playroom. Normally doctors are not allowed in the playroom, but either Mattie had to go back to his room for an exam, or invite Dr. Gonzales into the playroom. He went with the latter. Dr. Gonzales also assessed Mattie's range of motion with his left arm. Needless to say, everything Dr. Gonzales had in her pockets were removed by "Sam," which is the name Dr. Bob gave to Mattie's left arm.
Peter and Mattie spent a good part of the day designing a wonderful suspension bridge. In fact, when I arrived at the hospital, I was amazed by what I saw. Mattie cleared Methotrexate in record speed. We are told by Mattie's nurses that this is not unusual as we get to the end of Mattie's treatment. His body gets used to Methotrexate, and therefore, can flush it out easier. At 24 hours, Mattie's blood Methotrexate level was 3.33. A record low, so Dr. Gonzales started to prepare us for a Sunday discharge. She was right. By 4pm today, Mattie's Methotrexate level was .07, and his level must be .1 or below to be discharged. I arrived at the hospital at 4:15pm, to help Peter pack up the room and move out. However, to my surprise, Peter had already packed up and things were ready to go. While Peter was loading the car, Mattie and I walked around the PICU, talked to the nurses, and even went to feed Linda's fish. Mattie was happy to be going home.
We return to the Lombardi Clinic on Monday for a full day, including an infusion of MTP-PE. It feels like we never left the hospital, and I believe Mattie will go back in-patient on Wednesday for the next round of Methotrexate. Mattie ONLY has two more rounds of chemo left. The infusion coming up on Wednesday, and his last one scheduled for the week of May 11. In some ways it is hard to believe that almost 10 months have passed since we started. In fact, the 10 months are a blur, and the only way I put this time period into context is that I know school will be finishing up for Mattie's friends, there is a GW graduation coming up, and the weather is getting warm again. Needless to say, there are many emotions wrapped around this last chemo date. Certainly it should be a happy occasion, but instead we have Mattie's lung surgery looming over us, and then of course the moment that every cancer patient dreads, the wait and see game. Living from one scan to the next, hoping and praying nothing is revealed.
When Mattie arrived home, he happily played with his suspension bridge that he built. I think it is an impressive structure, which has now joined his train village in the middle of our living room! Mattie also had a visit from JJ, our resident Jack Russell Terrier. I think JJ missed Mattie while he was in the hospital! We had a nice dinner together thanks to Kathie, Mattie's occupational therapist. Thanks Kathie for the homemade lasagna, fresh vegetables, and wonderful strawberries!
I end tonight's posting with a message from my friend Charlie. Charlie wrote, "I am really glad you got some sleep. I do wish you could spend 24 hours in bed at this point to catch up on some of the sleep that you've missed rather than having to run around and do errands but I know that is not practical. Maybe once your parents are here, you can take a little more time to rest. I really worry about you. Sounds like Mattie had a full day on Saturday with the company (visit from Brandon and the medical staff) and the play. I am so glad that you got to see the play on video even though you were not there. The prop was certainly terrific and I am sure the actors were just as special if not more so. What Dr Bob said about the wrist makes perfect sense; two bones, two growth plates, remove one and the other keeps going so we have an uneven growth pattern. Although it will take surgery to fix it, realize that it is not life threatening, could not be fixed sooner even if identified by you, and that this happens to children who are not fighting cancer as well. When you get to the point of this surgery it will mean that the finish line is in sight and that Mattie's chemo and chest surgery are done and that he is on the road to recovery. Look at it as a last marker on the road to wellness."
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