Thursday, June 11, 2009

Thursday, June 11, 2009

Quote of the day: "May no gift be too small to give, nor too simple to receive, which is wrapped in thoughtfulness, and tied with love." ~ L.O. Baird

Mattie is very much interested in SpongeBob Square pants these days. Most likely because he knows I don't like it and because this is something I haven't let him watch on TV. Now that he has access to it, this is the hot item of the week. As I told you last night, Mattie took my kitchen sponge and transformed it into SpongeBob, and then gave Bob a washing. I snapped a picture of this process so you could enjoy the fun.

Mattie understood last night that he had a full body PET scan today and that he was going to get sedated for the test. He was very happy to hear that because sitting still in a confined chamber doesn't interest Mattie. I can't say I blame him. However, because he went to bed so late, I was worried and preoccupied all night with the fact that it would be hard to get to the hospital on time today. Normally I have no problem being late for appointments these days, but not scan days. Either you show up when you can get scanned or you miss the appointment. We had no wiggly room today, because we NEEDED the scan results before Monday's surgery. Needless to say all my worrying made me have another bad night of sleep and this did not help my mood at all day.

When I woke Mattie up this morning, he cooperated, got ready, and we headed to the hospital. Getting admitted for a pediatric PET scan is a funny (and I don't mean funny ha ha..) process at the hospital. Mainly because no two people give you the same instructions about how to get admitted for this test. In any case, we started out at the main admissions desk, went through that process, then went through day surgery admission (which is in another location), and finally we landed up in the PET scan department. The only reason we made it to the PET scan department in a timely fashion was because of Linda. Linda met us at Day Surgery and basically as always mobilized forces and helped to expedite the process. Thank God for Linda! I told her today that I know her job is to help normalize the hospitalization and illness experience for children, but she also helps the parents in incredible ways. Going through scans is hard enough, but with Linda, I am never alone, and I need this extra set of capable hands to balance Mattie so that I can answer questions from medical personnel and also have the energy to be strong and hold it together for Mattie.

Mattie had all his buddies helping him today. We had our favorite PET scan tech, Alex, working with us. Alex was one of the first techs we met at the hospital during the pre-sedation days, where scanning Mattie was down right impossible. The second buddy of ours, Debbi (our sedation nurse angel) was on the scene as well. With Debbi present, I just know a scan is going to go smoothly for Mattie. When Mattie is sedated for a scan, he goes on heart and oxygen monitors and wears oxygen cannulas (which delivers oxygen to his body). I guess what I am trying to say is sedating a child is not easy. It requires the presence of a sedation nurse and an intensivist (which is basically an intensive care physician) throughout the entire procedure and thereafter until the child becomes conscious.

Before the scan could take place, Alex has to inject a radioactive glucose tracer. Once this was injected into Mattie's central line, he had to sit very still for an hour, because areas of physical activity also attract the tracer. Lord knows we don't want the tracer to highlight anything other than what it is intended for (a tumor). So Linda and I had the challenge of keeping Mattie STILL for 60 minutes. Fortunately Linda has her bag of tricks with her. She pulled out her laptop, and Mattie watched SpongeBob and Veggie Tales clips. That worked beautifully. As the scan time was approaching, Linda had a special treat set up for Mattie. She played ABBA's Dancing Queen on a CD as the caravan brought Mattie into the scan room. I don't know if it did anything for Mattie, but it certainly made me feel better! Mattie handled the sedation process and the scan beautifully. I was very proud of him. Mattie debated with Debbi and he told her that he has powers to fight the sedation. We all laughed, because 45 seconds after the infusion of Propofol, Mattie was OUT!

While Mattie was under sedation Ann called me. Ann is traveling with Dr. Bob on business, but despite not physically being present, she was present today in spirit. I had three surprises today. The first surprise was that Mattie handled all of this like a CHAMP. The second surprise was that the testing process was only 30 minutes long. For some reason I remember a two long scan, but that is actually for a MRI and not a PET scan. So I was thrilled Mattie did not have to be in the scanner or under sedation for very long. Despite that good feeling, a part of me was praying for a two hour break. I hate to even admit that, because I wouldn't want anything to jeopardize Mattie's health. But the only time I have real down time is when Mattie is sedated. What a commentary.

I met Mattie once the scan was over and myself, Debbi, and Linda wheeled Mattie in a hospital gurney to the Lombardi Cancer Clinic to recover from sedation. To my third surprise, Mattie awoke VERY quickly from sedation. I have never experienced this before. He was disoriented, wanted to get up and was uncertain if he went through the PET scan or surgery. None the less, he pulled out of it quickly and Linda gave him graham crackers in the shape of goldfish because he was starving (he couldn't eat from midnight on until the scan was over). Mattie however, was shaking like a leaf, and I think the temperature in the room helped to contribute to this feeling. When Dr. Synder (Mattie's oncologist) came in to see him, she told Mattie he had to get out of the room. The room was too cold for him. He did not want to comply, but basically did because he was motivated to join the birthday party for Bridget in the clinic.

Bridget is another lovely young adult we have met through our clinic days. In fact, Bridget's dad came up to me today and gave me a hug. He said he admired me and if anyone can get Mattie through this it is me. That meant a great deal to me, and I am very fond of Bridget's parents. I also had the wonderful opportunity to meet Bridget's aunt, cousins, and sister today. So it was a nice celebration with family. It indeed took my mind off of getting PET scan results.

Mattie worked at the art table today and Jessie (one of Mattie's art therapists) kept Mattie busy for several hours. They did water play with a pirate playmobil set that Linda gave Mattie today. You can see Mattie blowing bubbles at the pirates in the picture on the left. I have a feeling everyone is encouraging Mattie to play with bubbles, because he will be doing a lot of bubble playing after lung surgery! After this activity, Mattie started working with clay, and is designing a sequel to the last big clay structure he created (which was a drive in movie screen featuring the character "big head"). While Mattie was playing, I was able to have lunch. I want to thank the Cooper's for bringing me lunch in the hospital today, and supporting me on a hard scan day. It is truly appreciated.

When Mattie and I got home later today, we played for several more hours. I told you the play of choice these days involves SpongeBob. As you can see in the picture on the right, Mattie and I worked on recreating scenes from SpongeBob. The yellow duplos represent SpongeBob's pineapple home, you can see SpongeBob standing in front of his home, and the blue looking creature is the snail character in the show.

When Peter arrived home from work, Mattie surprised him with a drawing that he sealed inside of an envelope. Mattie initiated this project on his own. Basically Mattie tried to draw a baseball stadium, and hand wrote the words, Go RED SOX! on the drawing. What caught my attention was the clarity of Mattie's handwriting, and the fact that he could spell words. This is definitely something I am not purposefully working on with Mattie. Yet it is naturally happening. Well that just caught my attention. Peter was thrilled to receive this special piece of art work.

We want to thank the Bartlett family for a wonderful and generous dinner tonight. We truly appreciate your continued support! After dinner we watched a Veggie Tales movie entitled, "Where's God when I am scared?" It is interesting that Mattie picked out this movie. We watched it last night too. He said he watched this movie at school last year, and when he saw we had it, it caught his attention and wanted to watch it. The moral and spiritual message in the movie was very moving and powerful, because in its own comical and witty way, it discussed and normalized fears. But it also empowered the viewer to understand that God is bigger than these fears, and he is always with us. Not that I have been closed off to God this year, but I do admit having my issues with understanding his plan. Some how watching this movie, which is intended for children was also inspiring for me. I have learned that I have little control over much in my life, and Monday's surgery scares me to death. However, I have to believe that God is with us and will help us through this horrific journey.

This evening Peter called Dr. Synder to find out the PET scan results. However, the results haven't been read yet by the appropriate person, so most likely we will have the results tomorrow. But waiting all day for me almost sent me over the edge. As the hours move on you start thinking the worst. As we head into Friday, Mattie will be heading back to clinic for pre-surgery blood work and then an echocardiogram to determine if there are any chemotherapy side effects on Mattie's heart. Dr. Synder did tell me that Mattie did not have to get hydrated by IV tonight. We are giving Mattie oral supplements now, which seem to help balance his electrolytes. I hope we can find a balance and move away from IV hydration at night at home altogether, because I can assure you it is impossible to get any sleep this way. In addition, Peter's parents are visiting us for the weekend prior to Mattie's surgery, and we will meet up with them tomorrow.

I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "Another busy but good day overall for Mattie on Wednesday. I am so glad for the break from the hospital into a more "normal" routine of Mattie playing with friends and you having the chance to revisit an interest from an earlier time. Even the play that doesn't specifically address the surgery or Mattie's illness is critical both for his development and because every time he "outsmarts" the bad guys in these games, it tells him he can overcome whatever bad things come his way. I am sorry that Mattie feels himself to be different from his friends (but he is) and that he is disturbed by his bald head; I, like you, think he is cute with or without hair, but anything that makes a child different is difficult to cope with. Fortunately his hair will come back when the chemotherapy has ended and perhaps that will help him to see that with time many of his scars will fade. I hope that Mattie eventually sees his scars as I do, as the map of the battles he's fought and won and as medals for his bravery. I hope the scan goes well on Thursday, I know it will be a long difficult day at the hospital for you.

The second message if from my friend and colleague, Nancy. Nancy wrote, "I just finished reading yesterday's blog and I agree with Charlie as to the exhaustion that each of you must experience at the end of a day. I also read your article in the Advocate and applaud you for your courage, truthfulness, and compassion especially with all that the family has gone through this year. In telling your story, you give courage and understanding to so many and some that you will never know. Each time that our Torah is taken out, we say a prayer for all those who are ill. I continue to include Mattie in my prayers and hope that this extra communication with G-d will bring the results that we all want. He, too, is so amazing and has learned so much from Peter, you, and the entire support system. Even with his illness, he has experienced many loving people and learned that illness doesn't happen because one did something wrong. I know that today will be a very fretful day and may the PET scan not provide any surprises unless positive. I shall continue to send positive energy in your direction. My wish is that Peter and you have a special evening, if possible, before Monday. It may help you to sustain the surgery and especially, the waiting. Mattie will be asleep, but, you will be fully aware of the clock. I am grateful for your friendship and support these last years and appreciate your extending yourself throughout this ordeal. May G-d watch over all of you for a very long time."

The third message is from my dear friend, Lorraine. Lorraine wrote, "I know today will be such a long and hard day for Mattie and for you. I send you my prayers and wishes that nothing shows up in the full body scans that is new, questionable, disturbing -- that Mattie and you are spared from any more surprises. How great that your day yesterday was filled with so much activity and friendship for Mattie and you. There is a note of such deep sadness in some of your comments, regarding Mattie's appreciation of his difference and other statements, that break all of our hearts. But there is also a note of great appreciation for the amazing caring and sensitive friends Mattie and you both have. Thought it was great that Pete got a chance to go to a baseball game, miserable rain and all, just to get a tiny break too."