Friday, September 3, 2010

Friday, September 3, 2010

Tonight's picture, just like the last few nights, was taken at Mattie's 7th bug/reptile birthday party. Ann got the kids these huge fly swatters and they were used to play all sorts of games at the party. However, Mattie decided to use his flyer swatter on James. James is the good hearted dad down on the ground, dressed like a roach. Mattie was enthralled that someone would actually dress up as a roach. At first Mattie did not think he could participate in the games, but as we helped move his wheelchair around, he got into the spirit of things, as you can see.

Poem of the day: No Right or Wrong by Charlie Brown

None of us is right or wrong
For we're each in a different place
Every person's loss is special
And grief has a unique face.
I do not tell you how to grieve
Or how many tears you should shed,
And you should not tell me to celebrate
And no longer mourn my dead.
Each of us has a different path
Some are high, some low, some hard.
But anyone who's loved at all
Knows death will leave his scars.
So thanks for sharing your story
I'm glad that you found your way,
And in turn be respectful of my words
For I too, need my say.

Despite this being a very challenging time for us, filled with sadness, confusion, and at times anger, I can say I made a new friend this week. I wasn't expecting to make any personal connections while attending the Hyundai events, but in essence I did. I had the opportunity to meet Tim. Tim is the associate administrator for the Department of Pediatrics at Georgetown University Hospital. He works closely with Dr. Aziza Shad. Tim and I had the opportunity to chat extensively while at the events, and we hit it off immediately. He is clearly competent and gifted at what he does for the Hospital, but what caught my attention is he is a deeply feeling and compassionate human being. He actually called me today, because he knew how I felt about the couple sitting next to us on the evening of the Hyundai reception. The fact that he cared about my feelings and wants to stay connected to Peter and I and the Foundation means a great deal to me. I hadn't mentioned Tim to my readers, but you should know that at each event I attended this week, I cried. I typically did this when Tim was present. It was either what he said to me, or how he said it, that captured my heart and at the same time I felt comfortable enough to cry. I think I feel at ease to cry in his presence because he understands the pain we lived and continue to live, and he isn't afraid to outright talk about it, or to see what pain looks like in another's face. So this week, I have become attached to another Georgetown person, and my list there is only growing.

I received this beautiful picture yesterday from Palen, Whitney's sister. As many of you may recall, Whitney was one of Mattie's favorite childlife interns. On July 22, 2010, I reported the following on the blog:

Palen lives in Florida now and is married to a US Navy officer, who belongs to the VP 26 Tridents Squadron. Palen is VERY familiar with Mattie's story, and attended both The March for a Mattie Miracle in 2009 and the Mattie Miracle Cancer Foundation Walk in 2010. Palen has been elected to serve as the Vice President of the VP 26 Tridents Officers Spouses Club, and one of the activities the Club is undertaking this year is a service auction. The Club solicited feedback from its members regarding the charity the group wanted to raise money for this year. Palen told me that the group was deciding among three finalists. One of which was the Mattie Miracle Cancer Foundation. Palen clearly represented our Foundation in a very passionate way, and the group decided that this year's funds from the auction will go directly to our Foundation. I was thrilled and so honored to receive this news, and as I told Palen it is awe inspiring how women who never met us are so committed to our story as well as dedicated to helping other children and their families battle cancer. Stay tuned for more details about this exciting event!

Palen snapped this picture yesterday after she came out of a planning meeting for the service auction. When she looked up in the sky, she was taken a back by this beautiful sight. Notice that there are SEVEN rays in this sunshine! Whitney told her sister that Mattie was with her yesterday and was very proud of the work she is doing on the auction to raise money for the Foundation. I couldn't have agreed more, as many of you know the symbol for the Mattie Miracle Cancer Foundation is the sun with 7 rays. Each ray represents a year of Mattie's life. Palen saw the Foundation symbol in three dimensional yesterday, a gift from nature!

I saw Ann's mom, Mary, this afternoon. When I saw her she seemed uncomfortable and hungry. So I worked with her caregivers to resolve both issues. As Mary was waiting for dinner, I decided to rub her hands and arms with the cherry blossom lotion I gave her and we began chatting. Mary told me about an interesting dream she just had. What caught my attention about this dream is it reminded me of a dream my mom recently told me about. A dream that my mom's grandmother had. I come from a line of women who lost their sons. My maternal grandmother lost a son, and my maternal great grandmother also lost a son. In my great grandmother's dream, her son, who was deceased, came to her and basically told her he couldn't have fun and live his life in heaven when he sees his mom in such agony on earth. Well ironically Mary told me a similar story today, in which her son was telling her that he is upset to see her mourning so deeply for him, and it is hard to live his life now in peace knowing how much she misses him. I am not sure what to make out of either dream, but I find it interesting that moms who lost a child do struggle with these questions, in even in our dreams.

As September 8 is fast approaching, I decided for the next several nights to share with you the blog postings from the previous year. I think it is important to reflect upon where Peter, myself, and Mattie's community were last year. As you read September 3, 2009's posting, I think one thing is clearly evident, I was in complete DENIAL that Mattie was going to die five days later. You can hear me talking about strategies to manage medication at home, and struggling to understand Mattie's pain, so that in essence we could take the pain away and he could go on living. As I read what I wrote, I can clearly see I was still in fighting mode, and not in the mode of saying good-bye. Though I am not sure how a mother can ever resolve herself to seeing her child die without giving every last effort to do something. The other obvious thing that comes through in my writing last year is that our Georgetown University Hospital family was imperative. They mobilized into action on that day for us. What you need to understand about September 3, 2009, was that when we readmitted Mattie to the Hospital (since he just was released the night before!) this was his final admission. He never was discharged again, and he never went home again. He was that sick, and yet, we took him home on September 2, hoping that we could manage him at home, and have a few days of peace with him there. But his pain was overwhelming and in all reality we should never have released him from the Hospital. On September 3, 2009, Mattie made the decision that he did not want to go home again, he wanted to remain in the hospital, and we respected that. However, in all reality Mattie was 100% correct, his pain couldn't have been managed at home, and I am so thankful that when I screamed we need dilaudid to Debbi (our nurse sedation angel), she got it immediately! All I can say is I won't forget Dr. Shad, Debbi, Dr. Biel, Dr. Spivek, Katie, Christie, and Jey on September 3, 2009.

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September 3, 2009's Blog Posting


Wednesday night was an absolute torture. Mattie fell asleep at around midnight, but by 1am, he couldn't get comfortable and was in a lot of pain. I never got any sleep last night and neither did Mattie. I was up and giving Mattie IV morphine every 15 minutes. He would have only about five minutes of pain relief, and then be screaming out in pain. As the morning wore on, I could tell Mattie was getting hotter to the touch, and by 6am, he felt like he was burning up. By this point, I went to wake Peter up and we then took his temperature. Mattie was running an 101 degree fever, and I proceeded to call the HEM/ONC doctor on call. I was VERY tired and very impatient. The doctor did not call me back right away, and so by 6:30am, I called Dr. Shad on her cell phone. Dr. Shad responded and told us to come right into the PICU. So at that point, Peter sat with Mattie, while I scrambled around the house getting ready and packing. Mind you I had just unpacked, since we got home on Wednesday night from the hospital. I was very unhappy and very frustrated, and felt sheer exhaustion.


Riding in the car to the hospital was painful. Every bump and motion made Mattie highly uncomfortable, and the level of tension in our car was so thick you could cut it with a knife. As we were wheeling Mattie toward the PICU, I ran ahead to try to get someone's attention. When I walked into the unit, I saw Debbi (our sedation nurse angel). I told Debbi we really needed Dilaudid, and within minutes, Katie and Christie (Mattie's wonderful HEM/ONC nurses) were delivering this potent pain killer to Mattie. Thankfully! It was only at that point did I see Mattie calm down and experience relief. It was almost like receiving a special gift, the crying and screaming stopped! I have heard so much crying this year, it almost has permanently drowned my ear drums!

We had a visit today from a surgical resident. When he walked in, he introduced himself and wanted to examine Mattie. I was highly confused by his visit, but he said he was asked to consult with us to rule out a bowel obstruction and to offer some suggestions for Mattie's intense bloating (since he said bloating can be a common side effect from surgeries and therefore his team may have some insights on how to deal with the bloating in general). Well I felt bad for this fellow, because between Peter and I we practically chewed his head off. I was confused by his visit because last night's gastroenterologist ensured me that Mattie did not have a bowel obstruction. He told us he wanted us to do a follow up x-ray today and also listened to Mattie's stomach with a stethoscope. Mattie however needs to be in control of the process. He holds the part of the stethoscope that touches his body, and moves it where the doctor tells him to. In fact, Mattie knows where many of his major organs are located in his body. Mattie is now being nicknamed the "little doctor."

Taking an x-ray of Mattie was downright painful to watch and hear. I let Peter take this project on, and I waited in the hallway. Mattie lands up writhing in pain and screaming, because his body is SO full of fluid. So when the tech tries to put the xray film behind him, it is excruciating! Today Mattie looks like a juicy tomato. His stomach is enormous, his face is swollen, and his legs are almost twice their size. The x-ray tech had her hands full with Mattie, but she was lucky enough to have Peter's assistance.

Jey, Mattie's "big brother" came up to visit me today and we were talking about what a special CT tech he has been for Mattie. However, you should know that many techs are not wild about Mattie. Mattie is perceived as difficult and some even are bold enough to think he is spoiled. I personally am offended by those who view Mattie as spoiled. Here is a boy who has been dealing with one of the most virulent forms of cancer, has survived three major surgeries, 11 months of chemotherapy, and a host of psychological consequences of cancer. It seems to me that such a patient deserves to be spoiled and pampered to some extent. It turns out though, as these same techs, have gotten to know Mattie they realize how wrong they have been about him. In fact, many of them now greatly respect Mattie for his forwardness, his ability to advocate for himself, and to get his needs met. Funny how these individuals have been transformed. As Jey rightfully said to me, it is just a matter of hospital employees remembering why they chose to work in a hospital, and to also make the effort to get to know their patients. So true!

Jey came to talk to me today about getting a fish for Mattie. I thank all of you who wrote me about pet fish ideas for Mattie. I told Jey that I would love for Mattie to be able to bring his pet fish into the PICU when he comes to stay over. I think Mattie would find watching the fish and trying to care for it very therapeutic. However, having live animals in the PICU is against hospital policies. I need to talk to Linda about pets and integrating them into Mattie's life here. Jey is a spiritual person, but like myself, is having a very hard time understanding and accepting God's plan for Mattie. It is actually hard to come to peace with this. Jey let me know that when Mattie dies, and my family no longer will be coming to Georgetown, that he plans to change careers. He said he will be unable to work here any longer, we have had that significant of an impact on his life. I was actually very, very touched by Jey's sincerity, commitment, and love for Mattie and my family. I told Jey that meeting Mattie was fate for him, since Mattie was diagnosed with cancer on his father's birthday, July 23.

Peter summed up Mattie's issues to a T today. Mattie is contending with three forms of pain, and somehow it is our responsibility to be able to treat each form so that we can effectively provide some relief to Mattie. The three forms of pain are: 1) anxiety, 2) the cancer itself, and 3) constipation and fluid retention. Naturally these three forms of pain require different treatments, and up until today, we were just throwing pain medications at all the issues, which clearly was ineffective.

To address the pain from the cancer, the HEM/ONC team consulted with Dr. Spivak. Dr. Spivak is the head of pain management at Georgetown Hospital, and he helped us during Mattie's sternotomy in June. Dr. Spivak felt that Morphine was no longer effective for Mattie, and ordered an IV drip of Dilaudid. In addition, we will be increasing the concentration of the fentanyl patch on Mattie's back. My concern however continues to be over medicating Mattie. But Dr. Spivak assured me as the pain subsides from constipation or fluid retention, we can taper down the medications if need be.

We also consulted with Dr. Biel today. Dr. Biel is Mattie's psychiatrist. We discussed Mattie's intense level of anxiety. The littlest things set Mattie off. He is sensitive to touch, and Peter and I can no longer hug or hold Mattie. This is a very counter intuitive feeling, because when your child hurts, you want to hold them. In addition, Mattie is afraid of the infusion of most medications, of doctors and nurses examining him, and the list goes on. He is also extremely frightened of perceived pain. He fears the start of pain and the inability to have relief from it. It is actually a horrendous sight to see your child so anxious. In any case, Dr. Biel prescribed a higher dosage of IV valium for Mattie today and we are giving it to him every two hours. Though Mattie has spent the majority of the day in and out of sleep, we feel this is actually the most humane way to treat him right now, until we get his pain under control. However, now at 11pm, Mattie is up and highly agitated. Somehow the nights are always the WORST for us.

As for the constipation and fluid retention, this is actually more complicated to manage. To handle the constipation, Mattie had to receive Methylnaltraxone today through his leg catheter. We selected the catheter because we thought Mattie would prefer this method to the actual insertion of a needle in his leg. None the less, Mattie put up quite a fight today, and refused to have his leg catheter accessed. Peter and I tried talking with him, rationalizing with him about the importance of the medication, and also trying to normalize his fears. NOTHING worked. So we even attempted giving him a dose of Dilaudid and Valium before attempting to insert the needle into the catheter. But basically nothing we gave Mattie relieved his anxiety over this procedure. When Dr. Biel spoke to Mattie today, he asked him if Mattie was scared or frightened of anything. Mattie answer, "yes." However, the only thing he claims to be frightened of was getting medicine through the leg catheter. As the day wore on, I realized he needed to receive this medication and we couldn't hold it off any longer. So Peter and I played good cop, bad cop. Mattie got frustrated with Peter and threw him out of the room, which was the perfect opportunity for me to work with Mattie and play good cop and get him to comply. Meanwhile, Katie and Christie, Mattie's nurses, were patient and stayed with us throughout this entire ordeal. Mattie did allow Katie to give him the methylnaltraxone through the catheter, but I really wonder how we are supposed to do this every other day at home?! One thing became very evident to me from this experience. Mattie and I most definitely have a special connection. Not just because we are mother and son. Mattie and I think a like, we have similar personalities, and react to things similarly. Under times of stress and chaos, this is actually a blessing, because I know exactly how Mattie is feeling or perceiving things. Mattie and I have survived many things together as he was growing up. His toddler years were far from easy, but we grew together and always respected each other. It is through this respect, which was earned, that I can rationalize with Mattie and most times he will comply with what I am asking him to do. This is a powerful trust and gift to be given.

The xray today was very revealing. In fact, the intestines couldn't be seen in the xray, because the main culprit in the film was fluid. Mattie's body is completely filled with fluid. Where did the fluid come from? Well there are a lot of theories, but the main one is due to Mattie's lack of nutrition. Mattie is unable to take in protein and produce albumin, which is the most abundant blood plasma protein produced in the liver. Albumin is a vital protein that prevents the intestines and blood vessels from leaking fluid into the body cavity. Since Mattie's albumin level is low, fluid is literally leaking from his vessels and accumulating in his body. In fact, if you saw Mattie's body it is almost unrecognizable. He is so swollen, he looks like a round mass rather than a seven year old child. So today, Mattie was given an infusion of albumin, which will hopefully pull the fluids back into his vessels. He was also prescribed Lasix, which is a diuretic, used to flush excess fluids in the body. I am told that it will take almost 72 hours to get Mattie's fluids under control. So we will be here through the weekend. Another holiday spent in the hospital, what a surprise, but we really don't even care any more!

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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I can only say that people who try to tell others how to feel are like those who try to tell others how to believe or pray. It works for me, is what they think, so it should work for you. And if it doesn't, then, either you are not trying hard enough or there is something wrong with you. In grief as in our search for G-d, we are all unique. A chorus sounds as it does because it is made of many different voices and it would not be the same were they all alike. So it is with life, with death, with grieving and with prayer. The One who is, made us each unique so that our voices could be told apart when he listens for each of us. I am glad that the couple found a way to cope with their son's death but it is not your path nor Peter's and they should be respectful of that. I am amazed that you made it through all three events and of course you found yourself asking "why isn't Mattie one of those who made it, who survived"? You wouldn't be his loving, caring parents if you didn't feel that way. And it is hard to believe that with cancer as great a problem as it is in children that we are still working with 25 year old "equipment" (drugs). It is a sad commentary on our priorities. I think the gifts you were given were lovely and I do hope they help you make it though this time leading up to the anniversary of Mattie's death. As you walk the path today and everyday,know you are loved, supported and not walking it alone. I hold you gently in my thoughts."