Tonight's picture was taken at Mattie's 7th birthday party. One of the activities at the party was designing your own cupcake. Mattie did not like many sugary treats, but over the course of his year in the hospital, he grew to love vanilla frosted cupcakes. It became one of his signature traits. At the party, Mattie worked hard at frosting the cupcake and decorating it himself. You will notice that he put seven pretzels in the cupcake to represent seven birthday candles. You would think after working diligently on this creation, he would want to eat it, but instead he handed it over to me, and told me he wanted me to eat it. The funny part about this, is over the years, when people gave Mattie sugary things, he would land up giving them to me. I was the great recipient of candy, cookies, and cakes throughout Mattie's years, and we always joked with each other, because I would ask him who was the kid in this relationship, him or me?
Poem of the day: Almost a Year by Charlie Brown
It's almost a year and I'm looking back
At what happened a year ago.
I can hardly believe how bad it was
It was such an awful blow.
Now when I read what happened
I can see that I was in denial.
I wanted so much for you to live
But you were walking your last mile.
The situation was unbearable
Although everyone did their best.
And just five days later
You finally got to rest.
I'm your mom forever
And that will never change
I wish things could have been different
But that's something no one can arrange.
I will never forget you
For your love is sealed upon my heart.
And I want to believe that in the afterlife
We will no longer be apart.
I had the opportunity to meet my friend, Carolyn, and her two children today and go to the Christmas Tree Shops in Maryland. Some of you may recall my previous trip with Carolyn to this store. Unlike the name of the store, the contents inside have absolutely nothing to do with Christmas. Instead it is a discounted variety store. Peter introduced me to this store when I was living in Boston, and finally this year one has opened in our area. It is a huge store, and when we go, we land up shopping for a good two hours.
In a way, I have had to learn to shop again. As a mom of a very active boy, who despised shopping, I learned to either not go shopping and became proficient in ordering from catalogs, or I was a speed shopper and missed a good 75% of what I was seeing around me. In addition to this retraining, I also emotionally have had to accept shopping now. It it hard to go shopping and not look for someone else. One of the joys of shopping I used to have was picking out things for Mattie. I can no longer do that, and instead must accept that I have to pick out things for myself and of course Peter. With that comes a host of other feelings such as guilt and sadness. Guilt because Mattie is no longer around, and yet how can I be contemplating getting something for myself? Naturally sadness because I see toys and other things that Mattie would have loved to receive, but will never get the chance. So even something innocuous as shopping at times can be wrought with issues.
After shopping, we all went out to lunch together. Like Mattie, Gavin (Carolyn's son) brought along a toy or two to keep himself busy. Mattie would have approved of Gavin's toy selections! Ellie and I sat next to each other, and we chatted about her summer, her trip to visit family, and the excitement she had about a neighborhood party she was attending tonight. On the drive back home we talked about other topics Mattie would have loved, particularly snakes and rollercoasters.
As I promised last night, I will be reposting blogs from last year, until we reach September 8, 2010. So below you will find the posting I wrote last year at this time. I suppose I did not explain last night why I feel compelled to share these postings again with you. After all, if you were interested in reading what happened last year to us, you could easily access that at any time through the archives of the blog. I am also quite aware of the fact that rereading this may be hard for my readers, or this may disinterest you. I can appreciate both feelings, and naturally because this is not a class, or live discussion, you can choose at any point not to read something. However, I hope despite the difficult content I am writing about, that you will want to continue to share this painful journey with me.
Reposting the writings from last year helps to retell our story. I recall one of my colleagues who is a trauma expert, would come to lecture my students each semester. He distinctly told my students that you can not retraumatize someone by having them retell their story. The trauma (or incident) has already happened! Retelling the story must happen, retelling the details must happen, and if healing is ever to take place, these details and feelings must be confronted head on and processed. Retraumatizing someone by reliving the past is a myth. I remember hearing this lecture time and time again, but not fully appreciating it until now. Now I wholeheartedly understand what my colleague was saying over the years. I know others in my life may want me to put these traumatic details of PICU life in some compartment and focus upon moving forward and healing. Mainly because so many of you want me to be okay and happy again, so I understand the reasoning behind the concern. But having lived through trauma, I assure you forgetting the details right now is NOT possible. I carry the traumas with me, whether I repost the writings from last year or not. Having the opportunity to share them with you is powerful for me. It is powerful because in essence you are able to hear my pain, reflect on what I lived through in a year's time, and perhaps in the process it helps me see why this year has and continues to be so challenging for us. I may not remember the exact dates or medications that were administered, but for the most part, I recall many of these days vividly. As I reread September 4, 2009, I know exactly how I felt that day. I can recall the sights, sounds, and anxieties present within the hospital, and I can vividly see the exam room in which all the fluid was removed from Mattie's body. So whether I repost the blogs or not, I see and live what you are reading, however, unlike yourself who can stop reading it or can place it out of your mind after you read it, I can't. I can't because this is Mattie's story, and Peter and I lived this nightmare and we are forced to continue living with this being a part of our lives. For me, retelling our journey is one of the ways I have chosen to process my pain, and I hope you can appreciate my decision.
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September 4, 2009's Blog Posting
I have so MUCH to report today and yet so many emotions going around in my head that it is hard to know where to start. I will begin by sharing our harrowing Thursday night. This was a night that Peter and I will always remember!
As our readers know, Mattie was in intense pain on Thursday during the day, which is one of the reasons he was readmitted to the PICU. However, by Thursday night, Mattie's abdomen was becoming VERY distended. So much so that it looked like he was going to burst open. By around 2am, Mattie looked about nine months pregnant. The whole situation was down right frightening, Mattie was in excruciating pain, and the worst part about this is we weren't getting sufficient answers to our questions. At one point last night, we were dealing with over four different medical residents in our room, all from different specialities. Each professional had their own opinion about what was happening, but guess what?! No two opinions were the same. We landed up becoming highly anxious over all of this, and we were very uncertain how to help Mattie. The surgical resident felt that Mattie needed follow up xrays last night. So literally at 2am, a portable xray came up to take the first xray, and then about an hour later came back for an additional xray. However, I had a major problem with this x-ray tech. This tech had neither expertise working with children nor compassion to help a child in pain. The tech wanted to place Mattie's body in a very uncomfortable position just to take the x-ray. Mattie was hysterical, anxious, and in so much pain that he bearly could move his body. Yet the tech kept insisting and becoming impatient with Mattie that he wasn't complying with his directions. Peter was helping the tech, and I went into the room next door, because I needed a break from the screaming and crying. However, when Mattie yelled out, "Mommy," I ran back in the room, and chewed out the tech. I told him he had to learn to think outside the box. If he is working with a patient who is unable to move his/her body to a certain position, then it was his job to find another way to get the job done. So I showed him how it could be done differently. I was so angry, I wanted to throttle this man.
The situation only got worse. There were two groups of thinking for why Mattie's abdomen was dramatically increasing in size. One theory was that Mattie's pleural cavity was filled with air, and the other theory was the cavity was filled with fluid. Naturally air and fluid are two different things, and should be treated accordingly, not the same way. Our nurses and advocates were concerned about Mattie's distention too, and a few of them recommended the placement of an NG feeding tube last night to help tap and pull out the air from Mattie's abdomen. The problem with this is two fold. Mattie would have to sit still for the placement of this tube without sedation. This may work for a typical child, though I imagine no one likes the gagging feeling this tube produces while it is being inserted, but for Mattie having such a tube placement would only heighten his anxiety. In addition, as Peter astutely said, we are NOT sure that Mattie's cavity is filled with air, and if it wasn't, then we would be subjecting Mattie to an unnecessary painful procedure. So Peter did not consent to an NG tube placement. I was actually on the fence about this, I just wanted the stomach region to return to its normal size. But Peter did a great job, and he actually made the right choice in the end.
So basically after several theoretical arguments with residents, watching them manipulate and touch Mattie's abdomen (which caused INTENSE pain and anxiety), and two unpleasant xrays, we were all wiped out, with no real answers or a plan of attack for this growing problem. By 7am today, I literally couldn't take it anymore. Peter was up most of the night with Mattie, helping him manage Mattie's pain. I was listening to Mattie's pain all night, but physically couldn't move to help him. I was too wiped out from my previous all nighter the night before. Peter and Mattie's wonderful HEM/ONC nurse, Janelle, just couldn't give Mattie enough pain medication early this morning to balance and mitigate the pain. Mattie just kept on screaming and crying. It was completely INHUMANE! I had observed enough to know that something had to be resolved ASAP and we needed answers. Until we were able to get answers the doctors raised the concentration of Mattie's Dilaudid pain dosage, which we hoped would help with the pain, but Peter and I were both concerned that the cause of the pain wasn't being identified. We were only throwing medications at the problem to cover up the pain. So I wasn't happy and grew more and more concerned.
The irony is, I wonder if the doctors were as concerned as we were. They certainly did not act like it, but Peter and I just kept pressing the issue! I told Janelle, that the on call attending doctor, Dr. Abu-Ghosh (a lovely individual who was Cody's doctor, many of you may recall the story of Cody, a young boy Mattie's age who died from his four year battle with cancer this year) had 30 minutes to get herself here to answer our questions, otherwise I was going around her. I needed an attending physician to help us, and had more than my fill of residents by 7am. Janelle worked hard to pass along our messages, and in the mean time, I called Dr. Snyder, Mattie's oncologist. I basically started off the conversation with the line, "I need your help." She could hear Mattie writhing in pain in the background and within 30 minutes, ordered a CT scan and ultrasound for Mattie with sedation. I also paged Debbi, our sedation nurse angel, because I felt we needed a powerful advocate. Debbi responded to my page within minutes and came to visit and assured me that in an hour Mattie would be sedated and scanned. Thank God! I had asked for a CT scan on Thursday, but the doctors felt that Mattie did not need one. Here is the irony of all of this, so far when Peter and I have said that something is wrong with Mattie and he needs further assessment, we are usually 100% correct.
Debbi helped us obtain Versed for Mattie today. Mattie was SO anxious this morning, we could bearly touch or talk with him. Versed helped tremendously and we were able to take Mattie down to the CT scanner. Jey, our favorite CT tech, and Mattie's "big brother" met us in the CT room. He spoke with Mattie and told Mattie that he did not have to get off the stretcher mattress, instead Jey transferred Mattie onto the CT scanner, mattress and all. This was actually a very thoughtful and compassionate gesture, because any additional movements for Mattie were painful.
The CT scan identified the problem immediately. Mattie's pleural cavity was completely filled with fluid, NOT air! Thank goodness we did not do the NG feeding tube last night, because that would NOT have addressed the problem. We met with a radiologist today, who highly recommended a Paracentesis, which is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites. Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis. I liked this radiologist's style, because she performed this procedure immediately under the guidance of an ultrasound. The radiologist pulled out 1.5 liters of fluid from Mattie's abdomen. That is a HUGE amount of fluid, and it is no wonder he was in severe pain. The radiologist told me that when the pleural cavity is under pressure and that level of expansion, that this can cause off the charts pain.
I was relieved that there was an explanation for the pain, because I was also being prepared for the option that this issue wasn't correctable and this was perhaps just disease progression, making it virtually impossible to alleviate Mattie's pain. Hearing this news was devastating alone, and when I heard that the CT scan showed fluid build up, I felt as if I won the lottery because in my mind this was correctable. I also had the pollyanna attitude that once the fluid was drained, Mattie would feel better for a while, and we would be able to be discharged within a day or so. All very wishful thinking.
While waiting for the CT to be completed, I spoke with Jey in the hallway. He told me a very touching story about how challenging a time it was when he lost his father to cancer. He said he too thought he couldn't go on, and yet if he did not go on, he wouldn't of had the wonderful opportunity to meet and help people like Mattie and my family. I was in a state this morning, and yet Jey's comment remained with me throughout the day.
My parents came to visit Mattie this morning and then they went out to lunch with Mattie's director of school counseling, Susan. I appreciate all of you who are supporting my parents as well! Mattie really doesn't like anybody in his room other than Peter and myself, so my parents only come for very, very short visits.
I had the opportunity to see Ann. Ann and Alison worked very hard to make sure we were supported today, and Alison ordered us lunch and Ann delivered it to us. Alison also watched Ann's children, so Ann could come and spend some time with me. I am not the best of company, but Ann got me out of the room, into the fresh air, and eating. I appreciate Ann and Alison's efforts, because as the day wore on, it became even more depressing. Ann was up with me last night too as Peter and I were fighting with numerous residents and trying to get down to the bottom of Mattie's issue. I feel blessed to have her support, during a time when I really can't open up and allow others into my life. Ann brought Mattie some gifts today, and one of his favorite ones was an alligator tooth from Florida.
After Ann's visit, Dr. Abu-Ghosh came by to talk with us. She let me know that Mattie's albumin levels were still low and that he would still need to receive lasix to flush out excess fluids from Mattie's body. Dr. Abu-Ghosh explained that we wouldn't be discharged from the hospital until these levels stabilized, but she also prepared me for the fact that they may never stabilize. I am tired, but I put two and two together VERY quickly. What this adds up to is a very sick child before me, one who I may not have around for very long. In addition, it also means that we will be spending more time in the hospital than at home. The first thing that crossed my mind was that Mattie may never see home again. He seems okay with this, since he tells me he doesn't want to leave the hospital. Most likely because he is in pain and feels the hospital can manage it better than we can at home with our limited supply of prescribed narcotics. None the less, this whole revelation for me was extremely upsetting. When I shared this news with Alison, she said that she and the Team would do whatever we needed to recreate Mattie's home within his PICU room. But here is the issue with this, Mattie doesn't seem to mind the fact that he isn't surrounded by his things, this appears to only be weighing me down. The only two things Mattie really wants around him is his cat and a fish. Neither of which will the PICU welcome!
For the first time in weeks, I was able to sit by Mattie's side, and hold his hand and massage his legs. He has been in SUCH intense pain the last two weeks, that he did not want to be touched. So we had several hours of cuddling time today, and within those times, I noticed he became relaxed and peaceful.
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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "The picture that Palen sent is beautiful and very symbolic. I hope the auction is a tremendous success financially but it already is a success in further spreading the word about pediatric cancer and the great need for both funding and awareness. I do think that those who have had a child die are forever changed. Your sense of innocence, that you can protect the one you brought into the world from what is out there is gone. The relationship remains child and parent no matter how old both of them get. We have no "word/name" for an adult child, merely a modifying adjective. That tells you that the relationship which was forged never changes in the most basic ways and that at its best, the love remains as strong as it ever was. Reading the posting from last year was incredibly painful for me and how much more so for you who had to live through this. As you count down the days to this unhappy anniversary, I send you strength. I hold you gently in my thoughts."
