Quote of the day: "The greatest gift you can give another is the purity of your attention." ~ Unknown
Charlie wrote, "Once again in the blog we see the value of giving of one's time and attention to someone who needs it. All of these people, many of whom could have completed a desk full of work came out of their offices and from behind desks to participate with Mattie. I think that speaks so highly of the healing community that surrounds all of you. Some of Mattie's favorite presents are the ones that people took the time to make with him, not necessarily the most expensive ones. The gift of time adds a value all its own to any situation. I was so happy to hear that Mattie took some steps on his own without the walker. I hope they are just the first steps on a long, healthy and joyful path through life for him."
Mattie had a decent night of sleep on friday. He was up several times going to the bathroom, and Peter and I are so tired, that now we both acknowledge that sometimes we do not even hear Mattie calling for us at night. Mind you we are only about three to four feet away from him, so we should easily hear him. Ellen was our nurse last night. We just LOVE Ellen. She is a beautiful person and a fabulous nurse. She is the kind of nurse that will pull out books and do research on questions we have. She went into the research mode last night when we told her of our concern with the national shortage of Vistaril, the antihistamine that Mattie is using to combat nausea. I realize it may sound ridiculous, but I am just more comfortable with the Hem/Onc nurses we have already established a rapport with, when a new nurse comes into our lives (and this does happen on occasion), I feel like I have to be on hyper alert mode. Because this person really needs to be trained to understand Mattie and our needs. As Tricia (one of our favorite day nurses) tells me often, Peter and I are really like nurse techs. We take Mattie's blood pressure, temperatures, collect urine for analysis, and so forth on our own. We do this in part because Mattie is just more comfortable with us, but we also feel we want the nurses to focus on the more important aspects of Mattie's care. I am deeply inspired by these Hem/Onc nurses at Georgetown!
Peter and I woke up this morning at 7am to the sound of drilling. The promise I keep hearing from hospital staff is that the Hem/Onc wing of the hospital will be up and operational by April. At the moment, the Hem/Onc unit has been blended with the PICU. It has been this way since we began chemo in August. It is interesting to observe and experience the differences between PICU and Hem/Onc nurses. They deal with different issues and this greatly influences the type of nursing care that is therefore needed and provided. Having experienced both teams (PICU and Hem/Onc), I can honestly say they are both very competent teams. The PICU team delivered quality care for Mattie after both surgeries, but the PICU team is used to dealing with crises and unconscious patients, and the Hem/Onc team is used to dealing with long-term patients and their families. Because of the length of service cancer patients need, these nurses have to get to know their families they are working with. I think this style difference has caused some adjustment when these two groups of nurses were put together under the same PICU roof. So I am excited to see how the Hem/Onc nursing staff functions when they are in their own unit. Frankly, I am so used to the activity of the PICU, that I wonder how we will deal with quiet and no sounds of the monitors 24 by 7. So though the drilling tries my patience, I keep reflecting on what the ultimate outcome is, a new Hem/Onc wing.
Peter and I popped up after hearing the drills, and got ready for the day. We also started packing up while Mattie was sleeping. Our hope was that we would be discharged from the hospital mid-morning. We packed up smoothly and then Dr. Synder came to visit us at 11am. She told us that Mattie would need to remain in the hospital until at least 3pm for IV hydration. Because the chemo he was on is so intense, the protocol calls for 24 hours of post hydration. She bent the rules a bit, by letting us out early at 3pm. But Mattie was DEEPLY UNHAPPY when he heard that he had to remain in the hospital until the afternoon. He further got upset to hear that the playroom was closed and that Linda wasn't around. So Peter and I came up with Plan B. I had Peter pack up the car, and head home with all our things. The reason I did this was because I had booked a haircut for myself at 4pm today. The last time I got my hair cut was in July (the month my life stopped), and I thought I deserved a break. But I knew if Mattie got released at 3pm, I wouldn't be able to help Peter upstairs to our home with Mattie and all our things. So we divided and conquered today. Peter went home and unpacked, and then came back to the hospital with lunch for me.
Meanwhile, I kept Mattie busy. We played on the computer for two hours, and then when Peter got back, he took Mattie to the parent lounge to feed the fish. A priviledge Linda has given Mattie. He takes this seriously! When Mattie got back, I knew he was going to complain about wanting to leave, so I quickly located a movie for him to watch. We watched Homeward Bound today. It was a lovely movie about dogs who missed their owners. The owners had relocated and left the animals behind. But the dogs took it upon themselves to find their own way home to be reunited with their owners! While we were watching the movie, we were visited by Anthony. Who is Anthony? Anthony is one of the engineers at the hospital who has helped me many a time when I have complained about the lack of heat. Anthony visits us periodically. Today he came in and said hi to Mattie. Each time he visits us, he says a prayer. Anthony has deep spiritual convictions, and feels the Lord is going to bless and watch over and protect Mattie. I am not sure where I am at with all of this, but I know that Anthony deeply believes this and his convictions are helping guide me back to my own religious beliefs. Anthony led Peter, Mattie, and I in prayer. Mattie at one point looked at me while Anthony was praying, and smiled. Just a sweet and pure smile. To me, when Mattie smiles, it can melt your heart.
Once Anthony left, we were visited by Nguyet. Nguyet is another wonderful Hem/Onc nurse who we haven't seen in a while. Mainly because she works on weekends, and we haven't been in during weekends for a while. Nguyet was working in the transplant unit today with Tricia. Any case, Nguyet came over to thank us for her Christmas gift. She said that all the Hem/Onc nurses were thoroughly touched by the fact that we even acknowledged them while we are in the midst of Mattie's battle with cancer. What the nurses don't realize is that we had a whole bunch of Team Mattie elves working behind the scenes to make sure these gifts were purchased and wrapped beautifully! I then walked back to the transplant unit with Nguyet and met up with Tricia too. Tricia and I had a fun and lively conversation, as we always do. I guess my point is, doesn't this sound more like I am saying good bye to friends then leaving a hospital? These nurses have become our friends. They have seen Peter and I through some difficult times and have shared the good times too. Nguyet asked me an interesting question today. She asked how easy was it to be home? A very intelligent question. Being home is HARD. In some aspects it is harder to be home than in the hospital. As strange as that sounds. At home, I don't have ANY help. I can't turn to Linda, Jenny, and Jessie and a whole nursing staff. I found it insightful that Nguyet could empathetize with this immediately.
We left the hospital at 3pm, and then Peter and Mattie dropped me off at the salon. Celina, who cuts my hair, established her own salon on M street, NW. I hadn't been to her new salon, but when I entered she and her husband gave me a huge hug and asked about Mattie. Celina's husband walked me back to get a manicure. Mind you I did not schedule a manicure. But he wanted to pamper me today, and told me they don't know how to help me, so giving me the gift of a service would make them happy. I certainly wasn't going to turn that down. It was lovely to chat with adults today and to sit and drink cappuccino (yes, you are right I don't like coffee, but there are times it just works). In a way I feel like a new person today. I lopped off about three inches of my hair, but sometimes you just need to do that to feel healthy again.
After going to the salon I literally walked back from M street to our home. It was a beautiful and unseasonably warm day in DC. In the 50s. It felt like the start of spring. The walk was a wonderful part of my day, because I rarely get much physical exercise anymore. Most days my body aches, and I don't feel fit or healthy anymore. But I guess this is a small price to pay to try to restore Mattie's health. When I got home, I unpacked some things, and then I could feel Mattie's excitement. Mattie was looking forward to seeing Louise and Meredith (two lovely teenagers from SSSAS's upper school). Their family has been so supportive of us, and Mattie loves his time with the girls. When Tamra, their mom, told me that the girls wanted to come over tonight, I literally jumped at the chance for the help.
Meredith and Louise brought Mattie a special gift tonight. When Meredith was a little girl she asked Santa for a tipi. This was something she loved and she wanted to pass it along to Mattie. I find gifts like this so special, when someone wants to share a prized and meaningful possession with you, something that brought great joy in her own life. Mattie was SO excited to see the tipi and to set it up in our living room. Apparently he has announced that he is sleeping in the tipi tonight. We shall see how that works, especially with his IV going. Here are some wonderful pictures of Mattie in motion with the girls.
Left: The tipi meets Mattie's tent and tunnel! It is a welcomed addition!
Right: Mattie having a serious conversation with Meredith!
Mattie and Louise heading into the tipi!
What do you say about two teenage girls who lead busy lives and yet find the time to visit a six year old boy on a saturday night? I think Louise and Meredith are very special people and they bring out the fun and spirit in Mattie! I thank them for sharing their tipi with Mattie and their evening with us so that Peter and I could go out to dinner and have a moment to talk and pretend to lead a normal life for two hours. Thank you, the gift of time is priceless.
When Peter and I got home tonight, Mattie said goodbye to the girls and told them they could come back any time. High compliments! As we tried to settle Mattie into the evening, Peter and Mattie built for a bit and then Mattie started to feel nauseous. The doctors did not give us IV kytril for the weekend, so I am stuck at home with oral Zolfran. Major problem. Mattie refuses to take oral medication when he isn't feeling well and Peter and I had quite a battle with him tonight. We did get him into bed, hooked him up to an IV, with a sling on his left arm and tight t-shirt around his body to keep his arm secure, and now he is watching the movie, Racing Stripes that the Coker's gave him today.
We want to thank the Coker family for a wonderful dinner tonight. Peter and came home starving from the hospital, and the chili was delicious along with the cornbread. I appreciate these home cooked meals and I continue to experience some wonderful foods that need to go into Mattie's cookbook. Thank you Carolyn for the cupcakes too and Mattie thanks you for all the wonderful valentine's day gifts and cards from Ellie and Gavin. I think the rubber frog was a hit, along with the scooby books, and the new movie!
I started the day by reading the following e-mail. Susan C. is a former student of mine. I would imagine by now, you can see I taught some very special people. Susan wrote, "What a wonderful and glorious day to be taking Mattie home! I have to say that reading your blog has become a part of my daily routine. I feel like I am part of the family! As I write this I am still choked up from the photo of you and Mattie nose-to-nose. That has to be the sweetest photo I have seen yet of the two of you! Only second to all of the photos with you or Mattie smiling and enjoying life. What a struggle. But what joy you must experience every time you are able to have a moment like that! This may sound stupid, but since you said stupid comments and questions are allowed, I will fire away! I often feel sorry for people who have never experienced a life struggle. Having experienced the excrutiating pain of my sister's death, I can see the world more clearly, with compassionate eyes. As I put it often, I'm able to cut through the crap and really focus on what matters. As painful as it is to live every day without Cheryl, I love the fact that I can be empathic to others in a way that only one who has struggled can truly understand. The pain that our family has experienced only makes the bright moments even more amazing and wonderful. So in a way, I am grateful for the pain. Vicki, there is nobody more empathic than you, and here you are in a position of struggle, and you are reaching out to others more than ever! You extend hands to other parents of cancer patients. You receive help in a humble and appreciative way. You even, for crying out loud, try your hardest to educate others about the mental health side of a family's battle with cancer. What are you, superwoman? In the face of great adversity you have shown such strength of character, such a high level of class and tact, and such devotion and love, that I am simply speechless. There needs to be more Vicki Sardi's in the world!!!!!"
As I sign off for the night, Peter and I are on a quest tomorrow to track down a phosphorus supplement for Mattie. Mattie's kidneys are flushing phosphorus from his body leaving him with a very low level. Phosphorus is an essential mineral that is required by every cell in the body for normal function. The majority of the phosphorus in the body is found as phosphate. Approximately 85% of the body's phosphorus is found in bone. Inadequate phosphorus intake results in abnormally low serum phosphate levels (hypophosphatemia). The effects of hypophosphatemia may include loss of appetite, anemia, muscle weakness, bone pain, rickets, increased susceptibility to infection, numbness and tingling of the extremities, and difficulty walking. We certainly are going to try to encourage Mattie to consume more dairy products which are high in phosphorus, but eating right now is not top on his list. We are uncertain whether this is a temporary or permenant condition. If I made a list of all the long term problems Mattie is likely to have, I could probably roll up in a ball and become depressed by this alone. But I keep reflecting on what our ultimate goal is............SURVIVAL!!!
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