Sunday, August 16, 2009

Sunday, August 16, 2009

Quote of the day: “Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.” ~ (I Corinthians 13:7-8)

Mattie was up several times on Saturday night, and the IV pump felt like it was beeping every two hours. So needless to say, peaceful sleep did not happen for us, though at this point, Peter and I both could be enrolled in a sleep deprivation study. It seems to me you couldn't ethically ask someone to be this sleep deprived, so from my vantage point we are a sleep researchers dream come true. My sister in law, Lisa, asked me today whether there have been sleep deprivation studies done on caregivers, and how the lack of sleep impacts their physical and mental health. I can't speak to the most current research out there, but from my previous work, there is nothing out there to answer such a question! But I think Lisa is onto something! When we got up this morning, we were on a mission. The mission was to get discharged from the hospital and be trained on how to use the PCA pump to administer IV morphine to Mattie at home.

Kathleen was Mattie's HEM/ONC nurse today. I know many of you may recall that Kathleen designed a clay tile for the art therapy exhibit at the hospital that reads, "I wish for a Mattie miracle." Kathleen loves monkeys and she calls Mattie her "little monkey boy." Recently in the blog you may have seen a picture of Mattie with Kathleen, holding a Curious George balloon. I think Kathleen could see that I was worn out today and wasn't thinking as clearly as I normally do. Kathleen mobilized forces to help Mattie get discharged smoothly and effectively. We did receive the PCA pain pump last night in the hospital, but when Kathleen heard how the morphine was only going to be administered through the pain pump, she grew concerned about the safety of Mattie's central line. Our in home pharmacy set up the pump so that morphine would go through Mattie's central line only once an hour, the rest of the time, the pump would be connected by tubing to his open central line, but no fluid would be flowing through it. Kathleen flagged this as a problem, because if you leave a central line open and unclamped for a period of time, it can clog up and not function. These central lines are vital for Mattie, since he receives all of his medication through them! Kathleen wanted to avoid the development of a clogged central line. So she took it upon herself to call the in home pharmacy company and brain stormed a more effective form of administration. What the pharmacy landed up doing to correct this problem, was to put the IV morphine in a large bag a fluid, so that the pain pump will work continuously 24 hours a day. This will enable two things to happen, 1) the pain medication will be administered at the correct dosage once an hour, and 2) by having a constant flow of fluid through the central line, it will remain open and usable. If fluids are not allowed to flow through the open lines, they will become clogged. If they are clogged they are not usable, which would be a major problem considering all the medications Mattie needs to receive through them. So Kathleen was clearly looking out for Mattie's best interest today and advocated for him with our in home pharmacy! Kathleen also helped me by creating a listing of ALL of Mattie's medications, by dosage, and when they are to be administered. Mattie is taking SO many medications, that Kathleen also listed for me which medications are compatible and can be administered together through the central line. Peter and I can't thank Kathleen enough today. She really helped to take out the additional stress I was having about all these medications, and her medication list is now in my purse and posted in our kitchen. In addition to Kathleen normalizing all of this for us today, she also ran around making sure Mattie was comfortable and pain free while in the hospital. As Peter said, "Kathleen is the epitome of the nursing profession." As a synopsis, here are all the medications Peter and I are balancing right now for Mattie. This list makes my head spin, it is extensive, and complicated. Or maybe it is the fact that I am thoroughly exhausted, and managing one more thing takes super human strength!

1) Vancomycin (a very powerful antibiotic): administered through Mattie's central line, twice a day for the next five days to combat his Staph infection.

2) Kytril (an anti-emetic): administered through Mattie's central line, every 12 hours.

3) Zofran (an anti-emetic): administered through Mattie's central line, every 8 hours.

4) TPN (nutrients): administered through Mattie's central line and runs 16 hours a day!

5) Valium (for anxiety): administered through Mattie's central line, every two hours. It isn't compatible with IV morphine, so it makes the administration process a little more cumbersome.
6) PCA pump (IV morphine): connected to Mattie's central line 24 hours a day!

7) Celexa (for depression): taken orally once a day

8) A laxative (because morphine produces constipation): once a day.

9) Fentanyl Transdermal Patch (for pain): changed every 72 hours.

What I want to impress upon you is a couple of things. First, Mattie is now hooked up to an IV 24 hours a day! This is a major adjustment for him and for us. At some points in the day, he is hooked up to two IVs at once (for TPN and for pain). Tonight Mattie got upset with the fact that he couldn't move around on the floor, without having to drag the backpacks filled with medicine. I am waiting for him to ask about these bags, but for now, he seems to accept them, mainly because one of them helps manage his pain. But I know more questions will arise soon! Second, and I know you know this, but Peter and I are wiped out. Being in this state of exhaustion, it is very hard to manage all this medication, because every medication has a specific time during the day when it must be administered.

This afternoon, while in the hospital, Mattie was visited by his Aunt Lisa, Uncle Chris (Peter's brother), and his cousins, Nat, Sydney, and Will. Mattie had a good time with them, and Mattie particularly liked the gifts they gave him. One was a car that he could take apart and put back together, and the other item he really liked was a three dimensional wooden helicopter puzzle. In fact, everyone worked on this helicopter today, and it was a good activity for Mattie, and helped him stay engaged with his cousins. I was fortunate that Nat and Sydney took some pictures for me today on my camera. I was just so tired, but I am happy they captured the afternoon.

Left: Mattie with his cousins. From left to right is Will, Nat, Mattie, and Sydney.

Right: Mattie with his Aunt Lisa.

Left: Mattie animated as he plays with the car that has removable pieces.

Right: The finished product! The kids, Chris, and Peter all worked on this puzzle!

Left: Mattie with Uncle Chris. When Mattie was going through chemo this year, he always said he looked like his Uncle Chris. But now that Mattie is growing his hair back, we did a side to side comparison today to see who now has more hair! You be the judge!

Mattie was discharged from the hospital after 4pm. When we got home, Mattie immediately wanted to ride Speedy Red! So I hopped on with him and even in today's amazing heat, we were zooming around. I am happy Peter captured this moment for us.

However, as the evening wore on, Mattie's anxiety level increased. In fact, he sat by my side on the couch and wouldn't let me go. It is also hard to eat around Mattie because the smell of food makes him nauseous, and yet he wouldn't allow me up to move away from him to eat. The other aspect of this which makes things impossible is that Mattie wants to eat. He says he feels hungry, but he just can't eat. He lands up crying about this and is SO upset. The intense crying, hearing your child in pain, and keeping up this pace are tortures beyond belief. Tonight Mattie was highly edgy, confrontational, and broke down into tears immediately. Needless to say this wears heavily on Peter and I. Our emotions are frayed and we don't have much more to give. Some days I ask myself, how can I go on? How can I wake up and deal with another day like this? Of course, the alternative is I have no caregiving responsibilities left because Mattie is dead. So neither scenario right now is acceptable. If exhaustion doesn't completely deplete me, then seeing Mattie suffer in pain with each passing day certainly will.

As we head into Monday, Mattie goes back to clinic for a blood test. However, he was supposed to have a physical therapy session in the afternoon, and I cancelled it. None of us are in any state for this. Perhaps will we go back to this on Tuesday. I could cancel PT altogether, but I want Mattie to feel like he is working toward something, as long as he has the physical strength to do this. Peter's mom came into town tonight, and will be with us for two days. So it is my hope that an extra pair of hands will help lighten the load. But I am also aware of the fact that Mattie is scared and clingy now, so I know our presence is crucial to stabilize his mood. We have needed your thoughts and prayers all year long, but it seems to me we need them now more than ever before. Seeing your child dying before your eyes takes a level of courage, love, and strength that is almost indescribable.

I end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so sorry you had to go back the hospital on Saturday but you clearly made the right decision. I loved your comment that "Saturday was not the day we hoped for", what an understatement that is. It must have been frustrating, frightening, anxiety provoking and infuriating all rolled into one that you were unable to get the medication and relief for Mattie. I am grateful that it seems Mattie had a good, peaceful night on Saturday (and hopefully you did as well) in the hospital and that they were able to deal with his medical issues promptly. I am praying that you can solve the situation with Mattie's pain, anxiety and nausea so that you can return home for some family time. I will continue to pray and I am still getting emails from both the Dept of Defense transporters and the Lafayette Alumni group that they are praying daily for Mattie and for your family."

The second message is from a fellow RCC mom. Kathy wrote, "I've been reading your blog daily and have wanted to write for a very long time. I'm not very good at expressing myself so I put it off until now. I know that you've received many emails of late-words of encouragement from people who love and care about you all. We all feel so lost and don't know what to do with ourselves. We hope that your pain will be eased a little by some kind words -and by writing, it helps us to cope too. A few weeks ago I was working with a new , inexperienced nurse. She was crying because her critically ill patient was more than likely going to pass away on our shift. Being in charge on our floor, I spoke with her and gave her a big hug. I told her (as an old experienced nurse)that usually when our patients die, its their time. We've done everything that we can...all we can do now is make them comfortable and support them and their families as much as possible. Now this past week I read your news and realize that its easy for me to feel the way I feel about adults who have lived their lives-who are elderly or maybe have made poor choices. Its hard to say that we've done everything that we can for a sweet little seven year old boy. I'm around death and dying all the time. Sometimes I feel as if I've come to terms with it all...other times I wonder if I have a hardened ,unfeeling heart. Why am I so excepting of it? I know that its a whole different ball game when it involves people that you care about. It just doesn't seem right or fair. People often wonder how I can do the job that I do...it must be so hard. Hard is what you're doing every minute of every day. My job is a daily reminder to cherish the ones you love. I tell (and show) my husband and kids that I love them all the time. Your blog, your life- is a daily reminder too. I thought of you and Mattie the other day when I was holding Seamus' hand. You had recently wrote about how you and Mattie had held hands and how much it meant to you. Know that you are touching so many people. I pray that you get Mattie's pain under control soon and that you can get him back home asap. There is nothing worse that watching people suffer. You feel so helpless. I can't imagine it being your child. You guys are awesome parents...and have done an outstanding job advocating for Mattie and meeting all of his needs. I pray that Mattie is pain free soon and that you will have enjoyable, peaceful days ahead. God Bless you all Vicki."

Saturday, August 15, 2009

Saturday, August 15, 2009

Quotes of the day (Thanks Tad and Charlie): "Children are the bridge to heaven." ~ Persian Proverb

"Silences make the real conversations between friends. Not the saying but the never needing to say is what counts." ~ Margaret Lee Runbeck


Today was NOT the day I was hoping for. It is funny, because even as I am typing this statement it sounds absurd. Absurd because we have lived through 365 days that we weren't hoping for, and we have many, many more to come. None the less, our goal this weekend was to make Mattie happy at home. That clearly did not happen today!

Mattie had a restless night, was moaning a lot, but was manageable. However, as the morning hit, he became more and more nauseous. No amount of anti-emetics helped Mattie this morning, and believe me I pushed IV Kytril and Zofran around the clock. Mattie was continuously vomiting. In addition, he was experiencing intense pain, but was unable to swallow any of his oral medications. The only items I was able to administer were IV medications such as his nutrient TPN, which ran over 16 hours, his vancomycin (antibiotic for a staph infection), and his anti-emetics. But as the morning continued, there was nothing I could do for his pain. I felt helpless, and SO frustrated. I tried rationalizing with Mattie the importance of taking his oral medication, but that was a losing battle, and the more I insisted, the more frightened and anxious he became. So I quickly realized that tactic wasn't effective!

While I was trying to handle Mattie, Peter was running around trying to fill an instant release morphine prescription. He went to our usual pharmacy, who said they had this medication. So Peter waited for 30 minutes while it was being filled, only to find out in the end that the pharmacy did not stock the medication. So much for customer service, and you have to wonder why the pharmacy did not even think about calling other pharmacies to find out other options for us. Any case, Peter came home, told me the story, and said he was going to try calling around other pharmacies to locate the drug. At which point I said absolutely NOT. I told him to call Dr. Shad and get her residents to do this! We had our hands full with Mattie, and I wasn't going to tolerate such busy work today. Peter did call Dr. Shad and within 30 minutes, the hospital tracked down a pharmacy in Capitol Hill who had this medication. So Peter went out a second time. However, each time Peter left, Mattie became more and more unglued. In fact, I was text messaging Peter throughout his trip because I wasn't sure how much longer I could manage Mattie's pain without this medicine he was getting filled.

Mattie did periodically nap at home this morning, because he was burning up with an 101 fever and of course was writhing in pain. However, he wanted me right by his side, so somehow I never made it out of my pajamas or even ate for most of the day. When Peter got home with the morphine, I could see quickly that things were totally out of control. So I had Peter sit with Mattie and I immediately called Dr. Shad. I told her about the fever, the pain, the uncontrollable nausea, and vomiting. She asked me if I felt he had to come in, and I said absolutely! I had to break the news to Mattie, but I think he was in such pain, he was open to anything to take it away. None the less, he wouldn't go in the car without receiving more anti-emetics. Though he wasn't due for a dosage, I caved in and gave it to him. Peter then lifted him up and into his wheelchair and they were off to the hospital without me. I stayed behind to clean up the mess that was created from the morning, and to take a shower and potentially pack for a hospital stay.

Before heading to the hospital later in the afternoon, I stopped at a local store in our complex and picked up lunch for Peter and I. While I was in the store, music was playing in the background, and guess what was playing? ABBA's Dancing Queen. I literally must have looked like a statue. Because hearing the song flooded my memory with all the physical therapy sessions Mattie had while he was learning to walk again. I associate the song with Mattie's fight against Osteosarcoma, and at the time, we were hopeful that maybe he was going to be the one in a million miracle.

At around 4:30pm, I arrived at the hospital, and I could see Mattie was MUCH calmer. His vitals were great (NO need for oxygen today!!!) and the IV morphine eased his pain tremendously. So I could see that my mission was to get a Patient-controlled analgesia (PCA) pump at home ASAP so we could go home on Sunday. A PCA allows a patient to self-administer analgesics (pain medications) intravenously by using a computerized pump, which introduces specific doses into an intravenous line. I expressed our wishes to Dr. Shad, and the residents contacted our in-home pharmacy service today to try to coordinate a delivery.

After speaking with Dr. Shad, I decided to go home, and pick up things that we would need to spend the night in the hospital. Sure I could have done that on my original trip into the hospital, but I guess a part of me did not want to admit that we really needed to stay, even though my gut instinct told me otherwise. While at home, I spoke with Dr. Synder, Mattie's oncologist, and she is working on presenting me other options to relieve Mattie's pain. They all involve different forms of chemotherapy, so Peter and I will have to seriously think about this. Now we are of a different mindset, caring for Mattie now is about comfort and compassion, and not about fighting the "bone bugs."

Mattie has had a very peaceful night in the hospital. I talked to Dr. Shad about starting Mattie on an IV anti-anxiety medication, and he started Valium today. Peter and I have noticed a big difference already, and in fact, it helped slow him down, so that at midnight he is actually sleeping. I am not sure he will need this at home, but he definitely needed it today, since he was in a very fragile and volatile place. I can imagine as pain builds up, and you don't experience any relief, anxiety is therefore a natural byproduct!

We want to thank the Lee's for a wonderful home cooked dinner tonight. Julia we loved your chicken and rice, and I can't thank you enough for the home brewed Earl Grey iced tea. I am a big Earl Grey tea fan! I also meant to thank whom ever sent us the most beautiful gerber daisies in the mail yesterday. They are a peach color and they look so happy. The card was lovely, but it wasn't signed, so I have no idea who sent them to us! But we thank you, they are so appreciated!

As we head into Sunday, our goal is to figure out what medications Mattie will need at home, and get him discharged tomorrow morning. Wish us luck with that! We did receive the PCA tonight and the IV morphine. Our in home company literally hand delivered it to me in the PICU. I am just so impressed how forces were mobilized today to make this happen.

I end tonight with three messages I received today. The first message is from my friend, Charlie. Charlie wrote, "Of course the path is never an easy one; Friday had to be an impossible day. An extra long procedure in radiation oncology with some very thoughtless people, followed by the whole situation in ultrasound with no door, no seating, no concern. And then to find out that the scheduled procedure could not be done after all and Mattie was transported back to the PICU without you. What an incredibly distressing day. Even though you finally got to go home at the end of all this, there was so much more to cope with. The possible infection in Mattie's line and the required antibiotics, the TPN via IV for 16 hours a day and Mattie's added anxiety. It speaks volumes that he was able to smile and enjoy some time in Speedy Red with all that going on. I am so glad you went with your instincts and got Mattie the car; you can see from his smile that it is making all the difference at this point for him. I know you are not a fan of medication but whatever makes Mattie's life better and more tolerable for him now is a good thing to consider. It is important for him and for you that he be calm enough to enjoy the time he has while he can since we don't know how the progression of the cancer will go. The best thing to do is to proceed as you are, enjoying and treasuring every moment you can and letting go of as much small stuff as you are able. I hope Saturday's trip to the hospital for the blood test is uneventful, the news about the infection is good and that you are back home quickly with Mattie."

The second message is from a colleague of Peter's. Sharon wrote, "I’m so happy to read on your blog that you and Mattie are home from the hospital, and able to be in your own surroundings. And especially happy that Mattie is able to enjoy some time with Speedy Red again. It must be so empowering for him to be able to race around under his own steam. And what little boy wouldn’t love such a car! The three of you have never been far from my thoughts over the past year, and I find my mind turning to thoughts of you and your struggle frequently since this most recent prognosis. I can see from your writings, Vicki, that you are working hard to process, accept, explore, plan, and I’m a little amazed that you even have the mental strength to process anything given everything you have to deal with on a daily basis. You’re amazing. It’s impossible to explain or even contemplate why Mattie has had to go through this horrible disease, but it’s clear why you and Pete are being asked to go through it with him – because he couldn’t have asked for better and more loving parents to help him through everything. Pete, my heart goes out to you. I think there have been a lot of tears recently in the world that Mattie has touched, and there will of course be many more. I don’t know how you’re holding up, and while my first wish would of course be health for Mattie, my second would be for a lessening of the pain for you."

The final message is from a fellow SSSAS parent and new friend. Laurie wrote, "I didn't want to let too much more time go by before letting you know that you are in my thoughts and prayers every day. I attended the wonderful prayer service last night and one of the exercises Ashley had us do (just as a means of facilitating our conversation) was to write down what we thought was Mattie's legacy -- in our view. I wrote down some thoughts and then decided it made sense to share these with you and Peter so you could know what your story has meant to me, a fellow St. Stephen's parent, but really just as a fellow parent... Mattie's effect on my life is immeasurable. I think of him (and you!) every day and I want you to know I thank you for sharing him with all of us. Whether he exhibits good or bad (!) behavior (and every single one of us can relate to your intermittent challenges with him) he's been a joy to get to know. He makes me laugh (for instance his love of taunting you with bugs -- and Peter's part in this as well!) and I often fine myself marveling at his insights and point of view. I'll always remember what pleasure he gets from just "playing" (and I totally understand how wearying this can be for you -- even under the best of circumstances!). Whenever I think of Legos, I'll think of Mattie Brown. Mattie is a gift and he could not have had better parents. Thank you again for sharing your gift with us. We are all better for it."

Friday, August 14, 2009

Friday, August 14, 2009

Quotes of the day (Thanks Noelle and Charlie):

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen." ~ Elisabeth Kubler-Ross

"Love is something eternal; the aspect may change, but not the essence." ~ Vincent Van Gogh

Last night, Mattie's nurse was Sarah Marshall. Sarah Marshall is a cancer survivor, and not only a competent nurse, but an amazing person. Mattie was edgy last night, but Sarah Marshall went with the flow. At one point, while Sarah Marshall was giving Mattie IV morphine, he decided to tell her that he really needs a bath. In fact, he was picking lint off of himself, and rubbing it onto Sarah Marshall. Instead of flinching or being grossed out by this prospect, Sarah Marshall told Mattie that perhaps they should put the lint in specimen bags. The dialogue was absolutely hysterical, and it was happening a little bit before 6am. I don't think I will ever forget this conversation, because you have to understand, Peter and I were attempting to sleep, and the lights were completely out in the room, and Sarah Marshall was administering medication in the dark, so that the rest of us could attempt to sleep. But Mattie was fully on despite being in pain!

I think though I am destined to just be up at 4 or 5am each morning. At this hour today, Sarah Marshall let us know that Mattie's second central line cultures came back positive for a Staph bacterial infection (she had to let us know, because she had to draw another set of cultures). Even at that hour, I questioned the results, especially since the first culture they took was and is still negative for such bacteria. So far, they have run three different sets of cultures on Mattie, and hopefully we will know what the third culture reveals tomorrow. Needless to say, they started Mattie on Vancomycin this morning. Peter and I are very hesitant to use Vancomycin with Mattie. First of all it is very powerful, it isn't called the antibiotic of last resort for no apparent reason. I was so upset with this bacterial result, mainly because I don't want Mattie on antibiotics if he doesn't need them. We even had Dr. Shad contact the microbiology lab at Georgetown to confirm the results. The director of Microbiology, who Peter and I have come to know, is on vacation this week. But Dr. Peters is so used to us, that when we call him, he will walk to the lab himself, pull out petri dishes and examine samples for us. I wish he were around today, to help clarify things for us.

Mattie had a very long Cyberknife procedure today, followed by a scheduled thoracentesis. Mattie was sedated for over 3 hours, and the safe limit for a child Mattie's age is around 2 and a half hour using Propofol. So clearly we were pushing Mattie's body. The Cyberknife procedure for Mattie has now been complete, and we should know within a week, if it accomplished anything for pain relief. While sitting in the catacombs of the hospital, I have observed the staff in radiation oncology greet their patients. Each patient is boldly greeted with the words, HOW ARE YOU? These three words have bothered me now for three days. I think the whole question is absurd! The person is a patient in the hospital, and getting radiation. How on earth do you think they are? I began to see that this was just a greeting that had no true meaning or purpose. I also noticed that all the patients responded by saying, "I am fine!" Clearly they are not fine, and I got to speak to one older patient in the reception area each day, and she was far from fine, yet always responded in this fashion. Needless to say, this question incensed me over the course of the week, because what it tells me is that the people greeting their patients do NOT have the foggiest clue how their patients are feeling or even what they are thinking. So after these blatant observations this week, I am trying to make a concerted effort to avoid the question HOW ARE YOU!

After Cyberknife, Mattie was transported while sedated to the ultrasound department. This is where the thoracentesis was going to be done. If I thought interventional radiology was bad, well ultrasound took the cake. The room they put Mattie in to do the procedure, did not even have a door. There was no waiting room for Peter and I to sit in, and we just stood in the hallway, until Linda found us and got us some chairs. The thoracentesis NEVER happened today. The doctor came out and immediately started talking to Peter and NOT to me. I let that go for a while, but what he didn't realize is that Peter is the more diplomaticl one in the family, because when it comes to Mattie, you will get barked at if I don't like what I am hearing, and I gave it to this doctor. He told us there wasn't enough fluid in the lungs to aspirate off. Mainly because the fluid was thick and viscous, and that the lung looked like a honeycomb inside. So even if they placed the needle inside, they would only get the fluid present in that segment of the honeycomb. He also explained to us that it is dangerous to remove such fluid, because in the process one could puncture the lung. After hearing all of this, I was in shock and very upset. Mainly because I did not realize that this was a possibility.....that the fluid in the lung can get so thick, and so forth. While we were talking to this ultrasound doctor, Mattie was being wheeled without us to the PICU. As we were trying to catch up, and were in a daze, we ran into Peter's brother and his family. They came to visit us today, but we were in no state to be talking to anyone at that point. Fortunately they understood and left. None the less, when I got up to the PICU, I was looking to talk with Dr. Shad. I couldn't find her, but Maria, our wonderful PICU administrative assistant paged her for me. While I was waiting to talk to Dr. Shad, I sat outside the PICU and began to cry. I am not sure why, but I do think hearing that the fluid couldn't be removed from Mattie's lungs today was too much for me.

Dr. Shad returned the page immediately, and I spoke with her. She felt that it was a good sign that Mattie did not have a major build up of fluid in his lungs after all the sedations and procedures he received this week. She provided a rational explanation for the thickness of the fluid, with the potential hope that it could clear up on its own. Dr. Eric, Mattie's intensivist, who worked with us all week during sedation, also elaborated on what Dr. Shad was telling us. Eric was great with Mattie, and before he sedated Mattie each day this week, he would tell Mattie, "No Surprises Mattie." To me that was a cute saying, because Eric always showed Mattie the drugs he was pushing through Mattie's central lines (so that he wouldn't get scared by the sensation of being knocked out) and also the motto was significant because Eric was saying in essence that he wanted no surprises throughout the entire procedure, meaning that Mattie's vitals would be stable.

After I got off the phone with Dr. Shad, I headed into Mattie's room. Norma, Mattie's sedation nurse, was in the room with Peter and Tricia (Mattie's outstanding HEM/ONC nurse). Norma is required to take vitals on Mattie every five minutes until he wakes up from sedation. Since he was knocked out for three hours, it took him a while to recover. While I was watching his vitals, seeing him gasping for air, and his lung moving in a strange rhythm, my emotions got the best of me, and I started to cry. Both Tricia and Norma couldn't do enough for me. They put me in a chair, covered me with a blanket, and Norma even rubbed my head. These nurses are remarkable people, and we feel fortunate that Norma came to work today on her day off to help Mattie. Consistency is key for Mattie and for us during this traumatic time.

Tricia is another phenomenal nurse, and she has seen me through some difficult moments of treatment. Despite Mattie's pending death being hard on all the HEM/ONC nurses, I can tell they stand ready to help us at a moments notice. I thank Tricia today for her support, and for all the HEM/ONC nurses for their concern this week.

We want to thank the Aridi family for a wonderfully generous lunch today. In fact we ate half of it while nervously waiting in the catacombs of the hospital! Thank you for all your support! We also want to thank Louise B. for dropping off a gift for Mattie before leaving for college tomorrow. Mattie hasn't opened it yet, but I know he will appreciate you thinking about him!

We are HOME tonight. The transition back was difficult. We got home around 7pm. I was getting very stressed out over this discharge since Mattie was running an 101 fever, his heart rate was high and his oxygen level in his blood was low. At one point, Tricia and I did not think that Mattie was going to be able to come home today. But Peter felt that we had to get Mattie out of the hospital. Mattie has become very edgy and anxious, and I concur with Peter that Mattie needs his familiar surroundings. None the less, I continue to be worried about managing Mattie's care, especially since we had to coordinate two deliveries tonight. One was medication and the other was the delivery of an oxygen tank. Mind you, the medications are new to us, and I don't know how to administer either, but an in-home nurse came over tonight and walked me through the process. However, I am saddened that Mattie has to be on TPN (his IV nutrition) for 16 hours a day. This is 16 hours in which he is hooked up to an IV! It will be a big adjustment for all of us!

When we got home we started unpacking, and yet balancing Mattie's needs. Mattie is SO anxious he won't let Peter or I out of his sight for long. Mattie's main goal was to ride Speedy Red today. So I was happy to accommodate that request. Peter snapped two pictures of us riding together! While riding, we bumped in JJ (our resident Jack Russell Terrier) and another dog named, Mac, who lives in the complex. Mattie enjoyed his time outside, and interacting with the dogs, which was wonderful!






















We want to thank Kathy Brown for a wonderful homemade dinner! I really appreciated the fruit!!! Much thanks for your continued support. We also want to thank Margaret, Mattie's first preschool teacher for stopping by today and leaving some crafts with us. I have always wanted to have a clay imprint of Mattie's hands and feet, however, one thing led to another and with Mattie's sensory issues as a baby, this task was impossible to get done. But hopefully now we can capture a piece of Mattie with Margaret's clay kit.

Ann came over tonight to help us with Mattie and to lend support. Peter and I are both in our own fragile places, but somehow we are able to allow Ann in and help us during a time when neither of us knows what we need. As I told Ann, my intention is not to shut people out of my life, but at this point, it takes whatever strength I have to keep it together, and hopefully others can appreciate this. Needless to say, we are so honored that Ann continues on in her role to help us coordinate Mattie's care, and I don't want any of you to think for a minute that Ann's generosity and kindness to us goes unnoticed.

Tonight I learned how to inject all the necessary vitamins, amino acids, an other nutrients into a large TPN IV bag. So Mattie begins his 16 hour infusion of TPN at home, and it will run until 2pm tomorrow! Mattie continues to run a fever tonight, and will be receiving Vancomycin through his central line twice a day. At some point we have to take Mattie to the hospital on Saturday for a blood test, to measure the concentration of Vancomycin in his blood. It is my hope that Mattie has a good Saturday and Sunday, and that his mood stabilizes. However, tonight I decided to put him back on anxiety medication, and hopefully by tomorrow we will be seeing a bit of a change in his behavior. I do not take to the use of psychotropic medications easily in children, yet, I also know that there were times this year that not treating Mattie for his anxiety symptoms would have been inhumane.

I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I read Thursday's blog and all I could think is: when does it get easier? I do so hope that Mattie's tumors shrink and put less pressure on his lungs. I've been with patients with fluid in their lungs and it causes difficulty breathing and often panic feelings as well. I believe this is the reason behind much of Mattie's recent behavior. When breathing is such an issue, one has no energy to deal with anything else and your brain is yelling at you to do something to fix the situation. It is very disconcerting for someone who understands what is going on and incredibly frightening for someone who doesn't. If this hasn't been explained to Mattie, perhaps you can find a way to do so and also ask him to monitor how his breathing feels so that you can check on it when he says it is difficult. It might make him feel better to have some control here. I just want to echo your thanks to all who are continuing to support Mattie now and to say that this time is precious and not to be upset at your inability to spend much time with them. Mattie needs both you and Peter close at hand and you need him as well.I want to share this story with you. I was one of those who was not at the prayer meeting yesterday due to a previous promise to meet with a group of women. I decided to excuse myself from the group for a few minutes at seven o'clock to pray "with" the group at the chapel so I did. When I came back inside, the women asked me if I was alright and I explained what I was doing and why. The response was instant and unanimous. "We all want to pray as well." So we did. And then I was asked if they could each say a prayer every night at seven for Mattie and of course I said yes. So I bring you yet more people who are "non resident" members of the Mattie support group."

The second message if from a colleague of mine. Kim E. wrote, "I have been reluctant to contact you as I feared that it would somehow be a burden. But as I read your last posting on Mattie's blog stating that saying something is better than saying nothing, I knew I should send an email. I've been following Mattie's treatment and your experiences religiously; I had been really hopeful that Mattie would be within the small percentage of those who survive this terrible disease. When I read the news that the cancer spread, I felt such heartbreak for all of you. In fact, the night that I read the news I woke up weeping, weeping for the life of your beautiful child cut short, weeping for you and Peter and the loss of time together with Mattie--the loss of being a witness to his growth and life experiences. These tears were not the first, nor will they be the last that I shed for you. I don't know how to make sense of this tragedy. It IS the worst thing that can happen! On top of it all, to read about the insensitivities of others who ought to be there to help you is just infuriating. I'm sure that your profound love for Mattie enables you to advocate for him, to create a circle of support around you, and to deal with the intense challenges that you have faced in this process. Although I really only know Mattie from reading the blog, I can tell he is an incredibly courageous boy with the spirit of a hero. Please know that each day you are in my thoughts and prayers."

The third message is from a close family friend. Jane wrote, "For many nights, now I lay awake trying to find the right words to forward to you. No words, no thing can explain the lack of understanding of this terrible fight you have ahead. As you gave permission to speak to you from the heart. I can only believe that God surrounds himself with the very special, very gifted angels...children. I wish so deeply that our little Mattie was not one of them....but we all know that one day we will stand with them and I know at that time if I am lucky enough to be in that very special place that I can get to know Mattie. I speak to your Mom often during the week. My heart breaks for her tears and yours, but we both agree that Grandma (Vicki's maternal grandmother) will be waiting with open arms...who better...to look after him. We can not control the uncontrollable, and believe me at 74 years old, I would give my life for your child or any child who has suffered through this terrible disease. Just know that there are so many of my friends who pray for all of you. God Bless and know you are in Sandy's and my heart."

The fourth message is from one of my mentors at The George Washington University. Rich wrote, "There is no script for this. I think this is part of what makes this so so unbelievably, mind-numbingly hard for you (and all the others) who go through this. I can read in your writing your fear of the future, your longing for past (even the recent past when there was hope) and it is just heart wrenching to me. I feel so happy for you to have had these good years with Mattie, yet so angry that they will cut short by the ravaging disease. As Claire would so vociferously say: "It's NOT FAIR." Of course her screams, of unfairness defy logic and in fact are completely fair, even, and reasonable. This is clearly not the case in the hell you have been living the past year and the final truly unfair outcome.I am thinking of you guys often. Although it means little in grand scheme, your experience has really changed me, and how I interact with Claire. She does not know anything about this, but we are closer than ever, enjoying the small moments of bike riding together, playing games, you know the usual stuff. For that I am grateful.You're both so strong, even when you are feeling so weak, vulnerable, helpless. I read in wonder/awe at the support you have around you from hospital staff, friends, and family and watch in shock as our country "debates" health care reform... I think at some level Mattie must know that the end is near. Thus he wants you by him at all times. I know it hard (beyond all belief) but if there is any way to enjoy these last days with Mattie, I know you will find it."

The final message is from one of Linda's former Childlife interns! Laura wrote, "How is today going? I hope that you both and Mattie are having a good day, tell my worm-loving buddy I say "Hi!". I have a summer job as the Marina Aquatic Center and Adaptive Recreation intern at UCLA, and the campus hosts numerous conferences, and in June there was a conference for 2,000+ people from around the world who are all studying worms! At dinner some of them ate with some of the other dept of cultural and recreational affairs interns and me, and I had to hear about worms while eating. It made me immediately think of Mattie and I read your blog and was thrilled to hear Mattie was home from his surgery. Meg sent me the bad news last weekend and I have caught up on numerous blog posts. The blog has allowed Mattie’s life to captivate even more lives and encouraged so many, just as the strength of the two of you has. In such a difficult time, I am moved by the way you are concerned for the well-being of the hospital staff, and how Mattie continues to impact them daily as voiced by Jey and as demonstrated by Mattie’s interaction with Kathleen (reminds me of the Curious George clay tile she made that will forever be on the elephant), and of course with Linda and so many more people. It’s great that Mattie can determine when these interactions are made. There were times when I knew he wanted to be with Linda or Meg, and if they were available I tried to respect that because we all have different relationships with different people. And there were times I will always cherish with Mattie, like the last hour of his birthday party when you two and all the kids’ parents were in the hallway socializing and Linda and Meg had left and so it was just me figuring out what to do (with help from Brandon with Mattie’s direction and Charlotte’s help too) and the playroom was a mess and it looked great…when I didn’t have to put things away in the playroom at the end of the day I felt like it didn’t look used (unfortunately lots of patients were on isolation at times), when it was cluttered it didn’t look usable, but at Mattie’s bday party you could tell there were children all having a blast. Everyone was laughing and screaming and having a wonderful time, and then of course it turned into let’s use model magic to make worms to put on Laura. Mattie has always faced everything head on, I’ve heard him say he has no fears and then he asks others what ours are, and makes sure he exposes them to us. I think it’s his way of helping us get over them, while he takes pleasure from our reactions. It sounds a lot like what he’s doing now is trying to help everyone overcome the fear of living without him. He has never ceased to amaze me at the things he comes up with and the way he approaches tough concepts. When I looked at the blog a few days ago for the first time in a few months, Mattie looked so much older in the photos. I bet you guys don’t see it because you’re with him everyday, but he looks so much more mature. I was shocked how quickly he grew, but then saddened when I read how he won’t get to share his gift with even more people, but he is mature beyond his years and has impacted so many people and will continue too. I think about Mattie, about you two, about the staff at Georgetown and Meg, about all your loyal readers, and about all of Mattie’s friends, and how he will always be a part of everyone’s lives. Like Jey said at times people have to remember why they are in this line of work, because it is emotionally taxing, but it sounds like so many people at the hospital have impacted your lives during the past year and that is why they do it, to make a positive difference, and in the process your family has made a tremendous impact on so many else. That’s the hard part. People go into health care wanting to make a difference, not realizing that the lives of others are going to make huge imprints on them too. Everyone will remember Mattie and should feel good about the times they laughed together. Mattie wants everyone to face their fears. The word hope has new meaning because of The Brown Family. It sounds like Mattie is still the same lovable Mattie with many tender moments and many moments when he knows who he wants to be around and reading about these moments makes me think he’s still himself, which is wonderful. It sounds like a lot of the time he does want to just spend time with his parents and that’s a great gift to the three of you and a testament to how much like you said he trusts you, and also how much he loves you both and wants to keep you happy, it’s the times when you’re with him that you push through and find that smile and enjoy that time, it’s when he’s not there that you are able to listen to the thoughts in your heads, and you need that time too but Mattie is still here directing it all, your time to yourself and your time with him. It sounds like you do want that time just the three of you, but you are afraid to offend others by not wanting everyone around at this time, but I think everyone should understand and it sounds like you are afraid that you are not giving others the opportunity to see Mattie or say goodbye, and no matter when everyone is going to want more time with him, but Mattie is able to help you it seems in directing the flow of people, so you three can as much time as possible as a family together which sounds like it is what you all want and need. P.S. To sum up my letter, you are not biased. You have an amazing son."

I end tonight with a Hawaiian goodnight blessing. Thanks Lana! Mo'e mo'e a, mo'e mali'e, i ka poli 'e, which translates, Dream, sleep gently in my heart.

Thursday, August 13, 2009

Thursday, August 13, 2009 -- We would like to thank Ashley Goff Glennon for hosting a prayer service for Mattie supporters tonight. We hope it was a special, peaceful, and memorable event for you. We thank all of those in attendance and all of our readers who said a prayer or paused tonight to think of Mattie from afar.

Quotes of the day (thanks Katie M. and Charlie): "There are stars whose light reaches the earth only after they themselves have disintegrated. And there are people whose brilliance continues to light the world though they are no longer among the living. These lights are particularly bright when the night is dark. They light the way for humankind." ~ an Israeli soldier, Chana Senesh


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ~ Mother Theresa

I can always tell how I am physically doing, by how I am eating. Today food just doesn't seem appetizing or even worth eating. In fact, seeing it makes me feel sick to my stomach. There are also times throughout the day, I land up holding my chest, because I can feel it fluttering. Similar to how I felt when Mattie was first diagnosed in July 2008. It just feels like panic taking over my body, but then of course it subsides, and I can move on. Last night was a winner! I woke up this morning and I told Peter, that Thursday has to be our last night staying here, because if I don't go home by Friday, I won't make it here. I am physically exhausted, and don't get me started about my mental state.

Mattie went to bed after 1am. He had a challenging night. Filled with fevers, agitation, and the need for constant attention. I can't leave his side sometimes, and I attribute this to fear and anxiety, all of which is SO understandable. However, by 4am, chaos ensued. As you know Mattie receives total parenteral nutrition (TPN) at night. This bag of nutrients provides Mattie with 1200 calories per day, and has to be run over 16 hours. Not an easy task to accomplish as we head home, but I can tell compared to some of the other things I will be managing, this will be the easiest. I just feel bad that Mattie needs to be tied to an IV for most of his days. Any case, at 4am, the fat (and literally there is a bag of FAT hanging on the IV pole that gets infused in) clogged up Mattie's IV tubing. Betsy, Mattie's nurse, and I were working on this together for two hours, using flashlights so we wouldn't wake up Mattie. Betsy changed the IV tubing, the filters on the tubing, and so forth. By the time we finished we had two IV poles in the room. One running the liquid nutrients and the other IV pole running the fats. You have to understand our room is the size of a postage stamp, so having two massive IV poles in the room takes up real estate. Betsy handled this very well, and was calm and collected, because if I were her, I would have tossed all the IV bags out the window!

Mattie was assigned Tricia today as his nurse. Many of you may recall previous postings about Tricia. Tricia is an outstanding nurse, and a great advocate for Mattie. I will never forget the time that Mattie got mad at me during his first cycle of chemotherapy. He was having a tantrum and said just horrible things to me. Tricia talked to Mattie, and then landed up tucking both Mattie and I into bed together. We had many tender moments like this with Tricia over this year. Tricia also brings me hot tea every morning, and this morning it was greatly appreciated! She also ran around the hospital getting Peter coffee. I was happy to see that Tricia was assigned to work with Mattie today, because I was getting paranoid. I noticed we weren't assigned any of our usual HEM/ONC nurses all week (except for Erin one night, the rest of the time we have been here, we have had traveling nurses). Part of me worried that this meant our wonderful HEM/ONC nurses who we love just weren't sure how to proceed with us. Having Tricia today helped with my uneasiness.

We woke Mattie up at 10:00am. He woke up in pain, and is still on IV morphine. Almost every two hours. Norma, Mattie's sedation nurse this week, came to get Mattie at 10:30am to bring him down for Cyberknife. What do you say about a person who is coming in on her days off to help with Mattie?! Amazing! Mattie had a very long procedure today. Maybe about 2 and a half hours. During the first half an hour, Peter and I went outside to get some fresh air, while Linda stayed in the Radiation department with Mattie. It was wonderful to get fresh air, and Peter and I sat on campus, in a spot we used to sit in when Mattie was first diagnosed with cancer in July 2008. It was actually hard to be in this spot, because it made us reflect how quickly this fight was taken from us. After 30 minutes, I headed back down to the catacombs to sit in the radiation waiting room. Peter went to find Dr. Shad, the director of the pediatric Lombardi Clinic to ask her some questions about getting discharged on Friday. Peter actually sat in on Dr. Shad's rounds, and I am SO happy he did, because a lot got accomplished. Meanwhile, as I was sitting in the radiation department, Linda came out to find me and gave me an update about Mattie. I was telling Linda how hard this is for us, and I also told her of my guilt for even taking a break. In essence do I deserve a break, when Mattie can't take one, and he is fighting for his life? Linda answered this question with a resounding yes, and of course we talked about things that I may want to do with Mattie before he gets quite sick. Linda has earned her title, Angel of Caring, for good reason!

While I was with Mattie today, Mattie had some visitors. We want to thank the Bower family for the wonderful lunch and desserts they provided us. We so appreciate your support. In addition, Liza B. (one of Linda's former volunteers, and a Mattie helper) came by and dropped us off some lovely pastries and a card. Sorry we missed all of you, but this week, we have our hands full with Cyberknife and the recovery from daily sedation.

Peter came to find me after he spoke to Dr. Shad. I learned that Mattie will receive his last Cyberknife treatment on Friday. In addition, his chest x-ray revealed that the right side of his lungs is almost completely filled with fluid. So though we did a thoracentesis (draining of the lung fluid) on Monday, Mattie will have to have another one tomorrow right after his Cyberknife treatment, while he is still under sedation. Dr. Synder, Mattie's oncologist, came by to visit us today, and she explained to me why this fluid is building up in his lungs. Basically the lung tissue is rubbing on the tumors with each breath Mattie takes. The rubbing further makes a sore in the lung tissue until fluid starts to leak from the lung tissue and build up. The scary part about all of this, is that for Osteosarcoma children, what kills them in lung disease. If we can't control the fluid, he will be unable to breathe. Ideally, we are hoping the Cyberknife treatments help shrink some of the tumors on the liver, which are putting additional pressure on the lungs, and further creating the lung tissue to rub together, and exude fluid. But there is no telling that Cyberknife will work or even be effective for Mattie.

After Mattie's procedure, the sedation team brought Mattie back to his room. It literally is a process. Mattie comes up on a stretcher, with a doctor, nurses, and a crash cart. The crash cart is needed because we are transporting Mattie from one floor to another in the hospital, using an elevator, when he is completely sedated. So anything could happen along the way! That alone is frightening, and this process has happened four times already this week. While Mattie was recovering in his room, I was in the hallway talking to Laura, one of our HEM/ONC nurses. Out of the corner of my eye, I could spot two of my students who came to visit. I couldn't talk to them long, but I appreciated their support, and their understanding that I had to jump back and be with Mattie. But Julie R. and Nicole M. came bearing gifts. They brought Mattie a magic trick, and they brought me a delicious homemade chocolate cake. In fact, I shared it with the nurses too, and they were in love with this cake. Thank you Julie and Nicole. You made a lot of people happy today!

However, this was a difficult day. Mattie is highly anxious, wants no visitors, wants Peter and I by his side constantly, and did not even want to play with Linda. In addition, he has been complaining of eye pain for the past three days, but today's pain was excruciating. Peter and I think that his eyes are getting dried out during the sedation process, since they become slightly open throughout the procedure, and remember Cyberknife is at least two hours every day. So Mattie has been very uncomfortable all day. Tomorrow we are going to ask that a lubricant be put into his eyes so they don't dry out. Right now, I have an ice pack sitting on his eye! With each cry and whine, Peter and I feel like we are further losing control of the situation.

This evening, Dr. Bob came by to visit and lend support. This was clearly not a medical visit, and we appreciate his concern and friendship. But Mattie did not want anyone in his room, and pointed Bob to the door. Bob handled Mattie's level of non-responsiveness very well. Soon after Bob left, Tanja and her daughter Katharina came by to drop off dinner. Mattie started screaming, so I knew that he wanted everyone out of the room. I spoke with Tanja and Katharina for a few minutes in the hallway, and then jumped back inside. Thank you for a lovely homecooked dinner and for all the wonderful gifts you brought Mattie back from your trip to Germany. Mattie loved the light up dinosaur and the slimy octopus. In fact, Mattie had me get Katie (one of our wonderful HEM/ONC nurses) because he wanted to scare her with the octopus. Katie hammed it up and Mattie loved it.

Left: Mattie building a ferry boat Lego today!
Right: Mattie holding up his light up dinosaur egg that Tanja and Katharina gave him.























This evening, I went out into the hallway to talk with Dr. Shad. She spoke to me about Mattie's palliative care options. She is encouraging us to do palliative care with Georgetown rather than with hospice. She assures me that they will work with Peter and I to keep Mattie home for as long as physically possible. But when it gets too much for us to handle, he will be able to be cared for in the PICU. She spoke to me about such directives as Do Not Resuscitate. In fact, I am going through the motions, but I can't believe I am forced to make these major life changing decisions now in my life, and for my seven year old son! There is just so much wrong with this picture. I want Mattie home, but I fear I won't be able to manage him there, especially as his lungs fill with fluid. In fact, I am happy to go home tomorrow, and yet at the same time I am frightened. We are headed home to learn how to administer oxygen, use a pulse oximeter (a non-invasive way to assess oxygen in the blood), and administer TPN and fat nutrients. All of this is overwhelming alone, but watching his breathing will be the most stressful for me. In fact, we are going home which should be a happy thing, but it really isn't. For the first time, I am headed home from the hospital and feel disillusioned, knowing that I am headed home to capture memories with Mattie, before Osteosarcoma claims his life. I can't tell you just how devastating this is.

I would like to end tonight's posting with six messages. The first message is from my friend, Charlie. Charlie wrote, "I am so glad that Wednesday's treatment went well for Mattie and that he is breathing better. Leave it to Mattie to find a way to make the treatment into a game and working hard to win. Mattie has the spirit of an Olympic competitor, always looking for the next challenge and showing us all how to take things in stride. What you are feeling with Mattie, wanting to preserve this time for yourself is perfectly normal. You are building the store of memories that will take you into the future and that is the most important thing right now. Mattie knows in his heart what is going on and I believe that is one of the reasons he also doesn't want company but only his parents and familiar things and a few select others around him. I think you will have to follow Mattie's lead on this and do what works for him and for you and not feel guilty about protecting your time together. I do want to comment on Dr Snyder's remarks to you about you and Peter being a vital part of Mattie's treatment program this year. This is absolutely true and she is not just being kind or trying to make you feel better. I know so many people who as much as they love their child, spouse or parent who cannot make the commitment to do the kind of medical care and loving treatment that you have this year. The person therefore ends up spending more time in the hospital or in a nursing facility because the person cannot face IVs or giving medications or clearing lines. So, believe me when I say, what you have done is well above and beyond. I hope Mattie's last two treatments this week go well, his temperature stays down and you are able to be released to go home this weekend. Know that a large number of people will be praying for you and Mattie tonight whether we are in the prayer group in person or elsewhere."

The second message is from Mattie's preschool director and our friend. Kim wrote, "I spent a bit of time this morning preparing the Parish Hall for the prayer service tonight. It was quite early – and I was all alone, and I used the time to simply immerse myself in thoughts about you and Peter and Mattie. I simply don’t know how you are going through this – but at the same time, I DO KNOW that you are going through it with unimaginable insight and courage. I suspect it doesn’t feel that way to you – but your strength shines through to the rest of us. Mattie is so special. That becomes clearer and clearer. I think you are so right to cherish and hold tight to the private moments your family now has. But even has you may close in a bit upon yourself, I’m sure you can feel the cocoon of love that surrounds you --- and will help you emerge from all this as the different “being” that you undoubtedly will be. I hope that the prayer service tonight will be a comfort for many people. Please keep reminding yourself that you are not alone."

The third message is from our friend Katie. Katie is Zachary's mom, and as many of you know, Mattie and Zachary were inseparable in preschool. Zachary has been right by his side this year! Katie wrote, "We've all been following the blog and news of Mattie's condition up here in Maine. We're thinking about you constantly and our hearts are aching. The kids understand -- on very different levels -- what's happening. There have been many "why's" asked. In typical 7-year-old fashion, Zachary commented, "Why don't the doctors just make a potion to cure Mattie? What are they, stupid?" The innocence of this comment actually made me smile. If only life were that simple. As you know, I was (and still am) ready to fly down with Zachary at a moment's notice -- if it would help Mattie and you all. I know that Zachary is worried that he won't get to see his friend again."

The fourth message is from a colleague and friend. Melissa S. wrote, "Dear Vicki, where do I begin? My words simply can not convey the grief I feel as you prepare to lose your most precious Mattie. I weep and can not explain the power of my tears--somehow I wish that those around you could cry some of your tears for you so that you might be spared just a sliver of your grief. I know in my soul, that this loss is just an earthly one and that Mattie will go on in spirit, as will your love for one another--but that seems like such minuscule comfort when viewed in light of the depth of the suffering that Mattie and you and Peter have endured and continue to endure. All I know is that YOU ARE COURAGE. I am completely humbled and shell-shocked by your journey and by your willingness to share it so honestly and profoundly. My life is deeper and richer because you have shared yours with me. Please forgive me for sharing this for it might seem a bit odd, but when I struggle to convey my thoughts/feelings, poetry sometimes helps me."
She is frailty, vulnerability, broken-ness.
He is yearning, a light in the darkness, hoping amidst fear.
He is frail, vulnerable, broken
She is reaching, fighting for light, borrowing faith.
He was knit in her womb, a builder of many, mysteriously wise,
She is his fiercest advocate, his tender touchstone, his heart's home.
They are family, mother and son, woven together, inextricably tied.
They are the clearest living picture of courage and love.
May you wrap each other in the awesomeness of your love for one another and somehow find a peace in the beauty that this love holds. You both are incredible gifts to one another and to this world. My deepest prayers are with you.

The fifth message is from Lesley, a good friend of my sister-in-law's, Lisa. Lesley wrote, "I am sure hearing from a stranger in your darkest moment is not comforting and I do not pretend to know how to do the "right" thing. I can let you know that I am up with you at night worried. I have identified with your family since our boys were born and seemed so alike. This year I shared with you many times that Mattie's behavior( the good, the bad) was typical of many seven year old children I knew....my hope was to comfort you. The play therapy session was truly something that let me know that he is no longer seven or typical. His desire to guide you is something that is remarkable and shows the type of unconditional love you have given him, he trying to givie right back to Peter and you. Mattie is insightful and poetic with his words and actions. I do not know where you get the strength but I do see that you have a community of people ready to be there for you on the days when you can not as strong. My thoughts and prayers are with your entire family."

The final message is from Meg, a former childlife intern of Linda's. Most of you remember Meg as Mattie's racing partner during physical therapy in the PICU. Mattie and Meg were good buddies, and instantly bonded. Meg wrote, "I have been thinking for the past week what I wanted to say to you both. But words cannot express my feelings. When I read on the blog the terrible news my heart broke for all of you. I cannot believe that it is true. Having a world without Mattie just doesn't seem right or possible. This just isn't fair. Above my computer on, my desk, is the statue that you gave me with the little boy holding a kite that says "Hope". I have been glancing and staring at it over the past week, thinking we hoped for nothing. I know we all hoped for a better diagnosis and out come but now I hope for something different. I hope that Mattie understands how much his parents love him and that they are willing to go to the ends of the earth for him. I hope that you and Peter understand how much Mattie loves you. I hope Mattie is able to spend his time enjoying his life and Speedy Red. I hope Mattie isn't in pain. I hope all you realize that myself, GUH staff, your blog readers have all been changed by you and Mattie. Lastly, I hope you and Peter know that Mattie will live in all of our hearts forever. Everyone who ever met Mattie, or read about him in the blog will have Mattie in their hearts. The ripple effects have been started. Mattie is leaving a legacy behind. People will learn from others what a special boy Mattie is and what a big heart he has! He will continue to change lives forever. I know you already know this but Mattie has a way of making the good come out in everyone and a way of getting under your skin. One can't help but fall in love with Mattie. Mattie made a difference in my life. His spirit and courage is truly a gift that we can all learn from. I am so grateful to have had the opportunity to get to know Mattie. My "Super-Mattie" book is sitting on my shelf and I have been looking at it a lot this week. Mattie really is a super hero. He has the strength to fight the villainous cancer mercilessly, along with the help of his side-kicks, Super Vicki and Super Peter. He is loved by all who are rescued by him. And most importantly he has a pure heart and fights for everything good in life. I can't imagine what is like to lose a child. But trying to imagine losing Mattie, and not knowing him closely, is something I can't begin to fathom. I know none of this can be any sort of a consolation for either of you and I wish I could just take all the hurt, pain sickness away. This just isn't fair. I am angry about this. The three of you are supposed to live happily ever after and I personally am infuriated that cancer is taking that away from you. My heart is with you while all of you are going through this difficult time. I am praying for all of you and I love you're family dearly."

Wednesday, August 12, 2009

Wednesday, August 12, 2009 -- I want to acknowledge that a prayer service is being planned for Mattie supporters tomorrow night (August 13). We will be there with you in spirit, and we so appreciate you standing behind us through this very difficult journey.

Quote of the day: "One of the deep secrets of life is that all that is really worth doing is what we do for others." ~ Lewis Carol

Mattie finally went to bed at around 12:30am, after we watched a Scooby Doo movie. Now when I see ghosts in these movies, I can't think of them the same way. I have been thinking a lot about the Mattie play scenario that Dr. Biel shared with me yesterday. I have come to one conclusion, and I realize I may be biased, but I think this assessment is quite accurate. I have an amazing son! A son who has trusted his dad and I with his treatment which involved cutting up his body in several places, surviving months and months of toxic chemotherapy treatments, and dealing with profound disabilities, where he is still unable to walk. This is a lot to even write about, much less to actually accept. Yet that is what Mattie did. He accepted it as part of the healing process, yet now, as Peter and I are trying to come to terms with saying good-bye to Mattie, which is actually much harder than the cancer treatment itself, we are finding that our son is able to guide us and help us along this journey. If that is not an incredible human being, I am not sure what is. But saying good-bye to Mattie is very unknown to us. Unlike his chemotherapy schedule, we do not know what his decline is going to look like or when it will happen. Though I realize it is important to allow others in during this time so they can have their time to say good-bye to Mattie in their own way, I find though that I am turning inward, and becoming very protective of his time. The special time we share in my mind should mostly be between the three of us, especially as he begins to decline.

Throughout the night, Mattie was up. We have had one restless night of sleep after another. In fact, Mattie's night nurse, Erin (as a reminder, Erin was the first nurse at the hospital to teach me how to change Mattie's central line dressing, and on another note, Erin is using the Mattie sunshine stamp on her wedding invitations!) last night came up to me at 4am, as I was lying in the hospital chair, and asked me how I was, and if I could sleep! It was a very touching scene, and that is just it, Mattie's HEM/ONC nurses not only care for Mattie, they care about us. Peter and I both sense that the news about Mattie is hard on them as well. In fact, sometimes Peter and I feel awkward now as we walk the hallways of the PICU. But I told Peter today, that this is all very natural. People don't want to hurt us by saying anything wrong, but I told him, we need to act as we have always acted, and once I think we do, then others will know how to interact with us. Mattie's terminal status has hit all of us hard. For that matter, it has hit my readers very hard too. I freely acknowledge this! I have received many e-mails over the course of the week, and many of you tell me you don't know what to say. Or if you say something, you are afraid how it will sound or be interpreted. I appreciate your level of sensitivity. I can't speak for Peter, but for me, saying anything is better than saying nothing. There are no miracle words to be said, but knowing we have your support, is very empowering.

I want to report that we had a MUCH smoother morning. Our patient advocate and our nurses have prevented us from receiving morning disruptions. The effort was greatly appreciated! In addition, Linda got on the shower light situation, and in true Linda fashion, had the problem fixed in an hour! Linda can and does accomplish wonders.

Mattie had his second Cyberknife treatment this morning at 8:30am. He was sedated for 90 minutes. This treatment was focused on the large tumor behind his rib cage. He will return for two more Cyberknife treatments, on Thursday and Friday. These treatments will target the liver. So far today, Mattie hasn't been running a fever, but the night is young. He remains on antibiotics, and the good news is he hasn't needed to be on oxygen around the clock today. Another first for the week! Of course as of tonight, he is back on oxygen! After the Cyberknife procedure, Mattie came up to his room, and slept for two hours. He was wiped out, most likely from sedation and the radiation. While sedated he had a chest x-ray. The chest x-ray was inconclusive, most likely because he was under sedation for a while. So Mattie had a second x-ray later in the day, after he was able to sit up for a while. The x-ray, looked much better, so they have ruled out pneumonia (which was a possibility earlier in the day, since he had a fever, and lots of fluid was showing up on the chest x-ray).

Norma, one of the amazing sedation nurses, helped us again with Mattie's Cyberknife treatment today. In fact, though tomorrow is her day off, she is coming in again, to help Mattie get sedated for Cyberknife. Norma told me that Debbi, our sedation nurse angel, was even thinking of cancelling her vacation this week because she wanted to support us. I am glad that Debbi did not cancel her trip, because she deserves a break. Working with sick children is very taxing and I have no doubt breaks are not only needed but necessary. Norma's daughter, Gabby, even made me chocolate chip cookies today. So we felt very well taken care of! Norma stopped by at the end of the day to talk with me too and we had a lovely conversation about the challenges of dealing with cancer from a parent standpoint.

We want to thank Charlie for a wonderful lunch today. Thank you for the brownies! They made our afternoon. Charlie told me that when she called Takeout Taxi today to order our lunch, the person on the phone asked where the lunch was going to be delivered. When Charlie told them to Georgetown Hospital's PICU, the person asked her immediately how was Mattie?! I told Charlie this made me laugh today! But it also reminded me the great acts of kindness and generosity all of you have bestowed on us so that we never had to worry about meals.

When Mattie woke up this afternoon, Linda greeted Mattie with a cart load of toys. He was very excited, and actually wanted to get up and go to the playroom. Before he went to the playroom, we had him do his respiratory exercises. Mattie did not want to do them at first, but we made it into a competition, and Mattie instantly wanted to play! I think the fact that Mattie has seen such respiratory therapy equipment as a spirometer and an acappella during his sternotomy helped a great deal. These items help him open his airways and mobilize secretions.

Left: Peter breathing in through the spirometer and Mattie blowing out through the acappella.

Right: Mattie blowing like a champ!

Left: Mattie knew Peter was up to the challenge, but then he handed me the spirometer and wanted me to show him what I was capable of! So the whole family received respiratory therapy today!
Right: Jenny, one of Mattie's art therapists, brought us up some wonderful cards and a gift from Bridget. Bridget is a cancer survivor and one of the lovely people we have gotten to know in the Lombardi Clinic. We want to thank Cathy, Bridget's mom for encouraging children to send Mattie cards and art work this week. I have taped up all the art work we received today in Mattie's room. Thank you all for thinking of us. We want to thank Bridget's family for the great balloons and bag filled with all sorts of wonderful gifts and crafts! You may see a picture of two guys in this photo. The photo is from Brandon and Jared (the Lego Brickmasters who played with Mattie at the Lego store), and they wanted Mattie to know they were thinking of him.

Left: Bridget drew a beautiful picture for Mattie with bugs and other creatures. It is a beautiful creation, and it makes Mattie's room very happy.

Right: I took a picture of Mattie's door. You can see that Linda has placed a sign on the door preventing others from entering, and Jenny brought Dr. Crazyhair (a Mattie creation) upstairs and he is guarding our door in a whimsical fashion! I wonder what people think about Dr. Crazyhair as they pass him by!

Mattie spent around two hours today in the childlife playroom. Mattie was enjoying his time with Linda. In fact, Mattie was so enthralled with the cart of toys Linda gave him, that he kept asking her whether all of these were really for him. The whole dialogue between Mattie and Linda was extremely touching and loving. So much so, that at one point, I got up from the table and had to blow my nose. I was beginning to cry, because Mattie and Linda have such an amazing rapport, and she has helped him in so many ways this year. In times when Mattie can't connect with others, it gives me great satisfaction that he always has Linda around who understands his ups and downs. I consider myself very fortunate to have two angels in my life. Ann is my angel of hope, and Linda is my angel of caring.

Left: Linda gave Mattie a toy that involved creating a circuit, in order to design a fully functioning vehicle. Peter and Mattie worked on this creation together. You can see Mattie hard at work.

Right: I introduce you to "Sweeper." I can't tell if it is a car or airplane, but Mattie loved it!

Left: We then got creative, and we decided to test Sweeper's skills on knocking things over. So Peter, Mattie, and Linda designed a Fenway Park replica, and a Yankees Stadium replica. The test was to see who Sweeper could knock down. In other words, which stadium or team in a way is stronger, the Red Sox or the Yankees. This competition took on a life of its own!

Right: You can see Fenway Park, the home of the Red Sox, and Yankees Stadium in blue!

Left: I hate to break it to the Red Sox fans reading the blog, but Sweeper knocked over Fenway park quickly!

Right: Yankees Stadium remained standing!

As the afternoon continued on, Mattie received a visit from Jey, his "big brother" and Jenny and Jessie. Jey hasn't been feeling well lately, so the fact that he came up to see Mattie, meant a great deal. In fact Jey said something today, that I found very profound. He told me that all hospital employees need to constantly remind themselves that"It is easy to forget, but it is hard to remember." Meaning, it is easy to forget and also hard to remember why one became committed to helping people and to working in a hospital. After months or years, it can become just a job for some, and some forget that patients and their families are stuck here around the clock and many of us are suffering heartaches. Jey reminds himself on a daily basis NEVER to forget, and he says though it is hard to visit Mattie now, he is not turning away from something because it may make him uncomfortable or uneasy. To me, this was such a powerful and truly compassionate statement!

Left: Mattie is sitting at the table with Liz. Liz is helping Mattie create a story about a dog named, Harry. In fact, Liz wrote the story Mattie created and gave it to me at the end of the day. You can see Jey standing behind Mattie on the left.

Right: Mattie was surrounded by women this afternoon. All trying to make him happy and be engaged. Thanks Jenny and Jessie for coming up from the Lombardi Clinic to work with Mattie.

After his time in the playroom, Mattie came back to this room, and took his second chest x-ray for the day. However, as the night sets in, he is now in need of oxygen and is very edgy and agitated. It is so hard to be around Mattie when he is like this, especially when you are living in a two by four. I have yet to leave the PICU in days, and I feel so overwhelmingly tired. As I know so does Peter.

Tonight, before Kathleen (one of wonderful HEM/ONC nurses) ended her shift, Mattie called her in his room. Mattie knows that Kathleen likes monkeys. Bridget gave Mattie a Curious George balloon today, and Mattie thought Kathleen would love it. So when Kathleen came in, he showed her the balloon and then told her he wanted to give her a kiss. Which he did. Mattie and Kathleen have a wonderful rapport, and I am trying to capture these special times that Mattie initiates!

We want to thank the Bires family for a wonderful dinner tonight. We appreciate your continued support! Mattie actually ate a few french fries, but for the most part he isn't eating anything. Though thankfully he is getting more than half of his daily nutrients from TPN. Mattie appeared to have more energy today, and we would like to credit TPN for this in part. As we head into Thursday, I have several goals. Of course one is Cyberknife, but the other two involve planning ahead for Mattie's hospital discharge which is scheduled for Friday night or Saturday morning. I spoke with Dr. Synder tonight, Mattie's oncologist, and I told her my concern that Mattie is on IV morphine. I am NOT allowed to give Mattie IV morphine at home unless he is on a regulated pump machine, which at this point in time, Mattie doesn't need. So in essence Mattie must go back on morphine by mouth tomorrow. Mind you we would have given Mattie oral morphine all week in the hospital, but the pharmacy had trouble getting it to us in a timely fashion. The IV version could come up faster, and because Mattie was in pain, we went with the IV version, naturally. But it will be a transition going from IV meds to oral ones, since the relief time is VERY different. So that is the second goal for tomorrow. The third goal is to solidify Mattie's TPN dosage, so that this nutrient can be ordered through our in home supplier in time for our arrival at home. In addition, the in home supplier won't release this nutrient to us, unless they train us how to administer it. Frankly, I feel that Peter and I have the skills to figure this out, especially since we perform many more complex medical care on Mattie on a daily basis, but I am not fighting the system. I just want the medication. But as Dr. Synder told me tonight, I have become a medical doctor this year, and she considers me a vital part of Mattie's treatment team. I am not sure if she was just being nice or what, but I do feel that Peter and I have been instrumental to Mattie's treatment throughout the year.

I would like to end tonight's posting with seven messages. The first message is from my friend, Charlie. Charlie wrote, "What a horrible day Tues was. Unbelievable. I've often felt that if you want to rest you have to leave the hospital. I guess not much has changed. I simply don't understand the lack of customer service in a hospital; perhaps this quote says it better: "Biggest question: Isn't it really 'customer helping' rather than customer service? And wouldn't you deliver better service if you thought of it that way?" (Jeffrey Gitomer). I think the non medical hospital staff could use a seminar on "customer helping". I am sorry things seemed to go from bad to worse for you; if you tried to write a book about it, I am not sure anyone would believe it. If the situation with the light bulb were not so sad, it would be funny, however under the circumstances it is just one more bad event in a horrible day. As you've noted and so have others, Mattie is a child wise far beyond his years. I am sure he suspects that things are not going well and I agree with Dr Biel that Mattie's play likely reflects this especially since it is a recurring theme. I think if/when the time comes to speak with Mattie about this you will find he probably already knows.I know you were trying to decide if you wanted Mattie at the hospital or at home as the cancer progresses; it was pretty clear from the blog today that you would rather be at home if it is at all possible. If Tuesday was any sample of how things go, in spite of the love and care of the nursing staff, I can totally understand your feelings on this subject. All I can say is that I pray Tuesday night goes smoother, that Mattie has less pain and that the radiation does what it is supposed to do. And I hope you and Peter do manage to get some rest in a very unrestful environment."

The second message is from one of my wonderful former students. Jessica wrote, "You say you still want emails, and I so I nervously take you for your word, and write today. I don't have words to express how devastated I am for Mattie, you, Peter, and the rest of your extended family and friends. I can only tell you that as I write this, tears are streaming down my face. I fear writing the wrong thing, showing support in some way that will be patronizing, too simplistic, not what you need to hear. It's the budding-therapist in me over thinking, the budding therapist you helped to mold. And I wonder if you realize that you've been teaching a graduate school class on grief these past 12 months through your blog? You've been teaching through primary source material, your material, that you have bravely shared with the world. I feel lucky to have been allowed a glimpse into the painful world you've been living in, and feel that I am a better person for it. And though there is so much more I want to say, to talk about with you, now is not the time. So today, please accept my virtual hug. It is one of those big bear hugs, with wide reaching arms that hold tightly and don't let go, filled with love and sorrow. One for you, Peter, and Mattie."

The third message is from my teaching assistant and friend, Carrie. Carrie wrote, "Hi Vicki, just finished reading about your heavy day yesterday. I too, was unable to sleep last night I awoke at 1am and 2am and just prayed as you and your family came to my mind along with all the others in pain in our world. Bless your little heart, I was crying and laughing at the same time reading your blog this a.m.. The story with the lightbulb is hysterical in all of the relativeness. I think it is symbolic to what you are living through; vulnerability and just wanting a light! Take care and I am so very proud of you and your talk with Dr. Biel. I have read books on children being aware of this and acting this out in play I was not suprised by Mattie's play. I completely agree with Dr. Biel's impressions. You are a brave brave woman Vicki. God has only given you what you can handle and you are blessed!"

The fourth message is from my colleague and friend, Denise. Denise wrote, "As you go into the night, when fear seems to become overwhelming, please know that the light of the love people have for all of you surrounds you. In the dark stillness, we are behind you, holding you all in our hearts and sending you strength and support on your journey."

The fifth message if from my friend, Julie N. Julie wrote, "There are no words to convey the depth of this sorrow, nothing to say or to do. Today I am just reaching out to let you know you are in my heart. Mattie may be losing the battle to cancer, as you say on the blog, yet he touched so many lives and so many hearts. I love him, pure and simple, and the whole community fell in love with him along the way and around the world. You have been such a loving mom (you are loving parents) and your love permeates everything and flows through Mattie and can never ever die. Not ever. Love is precious and it is yours and can never be taken away. I am holding you in my thoughts and prayers and pray, too, that Mattie finds peace."

The sixth message is from Carrie's mom. Elizabeth wrote, "How important for you to remember that Mattie came to this world chosing you and Peter for his parents and knowing before he arrived that this path he has chosen would bring thousands of people in touch with the meaning of love! He has had an important and painful mission. He has been and continues to be completing it so beautifully. Your family through this blog has brought a constant reminder of the goodness and love that exists in our world. I weep because I cannot imagine the pain with which you are dealing. You see, I love Carrie more than life itself. If I knew I was to lose her, I doubt that I could take another breath. I have been following the three of you while Mattie has taken this journey and you have been in my prayers and thoughts daily for over a year now. Words now leave me, but this poem is one of my favorites..."

We Trust I falter where I firmly trod,

And falling with my weight of cares,

Upon the great world's altar stairs

That slope through the darkness up to God,

I stretch lame hands of faith and grope,

And gather dust and chaff, and call,

To what I feel is Lord of all,

And faintly trust in the larger hope. ~ Alfred Lord Tennyson

The final message is from my mom. My mom wrote, "When did Mattie sense that he had reached the point of no return? The ghost house play described by Dr. Biel sends a chilling message to the adult world that Mattie knows he has to move on from his childhood life with his parents, family and friends to a place beyond where healthy children are not called and therefore must not be allowed to enter. In the deep recesses of his subconscious mind, he recognizes that his spirit must seek another home as his earthly body signals that it can no longer provide him the sustenance he needs to support him in human form. He is very clever and rationalizes that he must take the next step in the process to prepare for the inevitable. That is: Where will I go next and what will it be like? Not very unlike the rest of us who try to figure out what lies beyond our human experience and what happens to us after death. As a big fan of Scooby Do, he has incorporated the ghost story themes as the basic element of what must lie beyond the beyond and has thrust himself into it and found a role that suits his childhood understanding of detachment and separation from his human existence. He calculates with adult comprehension and intellectual honesty that his parents will not be coming with him. So he follows through by having a conversation with his mother to let her know that he's fine with her having another baby, reasoning that she will no longer have him to care for and that the other baby will take his place so she won't have time to miss him too much!! As if he could be replaced that easily! I have admired his heroic courage from the outset when this nasty, despicable disease struck and forever ended his carefree childhood, forcing upon him endless treatments and surgeries that tested his endurance and stamina while he countered by doing everything in his power to try to reclaim his body and save his life. He proved in his short life how to be a brave soldier and showed us how to fight to the bitter end against a formidable foe. We can all learn much by his example. Now, he has achieved a profundity beyond my wildest comprehension displaying through role play the wisdom of a wise old man although only 7. He is telling the world by his actions that he accepts that his spirit can no longer fight against the deadly enemy of cancer while expressing his fears through role play to communicate his concern for what he is going through to those who will listen. All from a 7 year old who is suffering in pain who has the clarity of vision to rationalize about the inevitable consequences of his illness and still worry about how his parents will go on without him!! I always knew Mattie was an intellectually gifted child but his prescient understanding of life and love is so touching in one so vulnerable facing the unknown. Mattie, you have given us many teachable moments in your short life and have by example provided us with an the ultimate instruction manual on how to face the end of our own lives with courage and strength."