Thursday, June 4, 2009

Thursday, June 4, 2009

Quote of the day: "Endurance is the crowning quality, And patience all the passion of great hearts." ~ James Russell


Wednesday evening was challenging for Mattie. He came home from the hospital and basically needed morphine every four hours. I was so happy when the day was over because it was my hope that Mattie would reset today, which he did. I told Mattie last night that Dan would be coming over to play with him. Ann connected me with Dan, and as you many of you know, Dan is a student at Georgetown University.

I woke Mattie up this morning because despite opening up his curtains and making a ton of noise, he wasn't stirring. Mattie woke up in a good mood and ate his breakfast. When Dan arrived Mattie was shy at first, but as Dan began talking with Mattie, Mattie became animated. I was unsure how Mattie would do today based on his day yesterday, but I am happy to report that Mattie had a very good time with Dan. I explained to Mattie that Dan wants to work with him this entire summer, and Mattie's response was "great!" I think Mattie is craving a male buddy, since this year he has been surrounded by women. Wonderful women, but clearly we play differently. So I am happy that Dan and Mattie are connecting.

While Mattie was with Dan, I decided to leave the house. For two reasons, the first is it is hard for someone to bond with Mattie if I am present. So I knew I had to remove myself from the situation today. The second reason was Ann got a hold of me yesterday and invited me out. Before I met up with Ann today, I went to the grocery store. There is a place I haven't been to in a long time. So much so that the store I used to go to had been totally remodelled. I guess a lot can happen in 10 months! I also had the opportunity to stop for tea and lunch, but instead of eating inside the restaurant, I literally sat in my car. I am sure that sounds totally strange. But it was a glorious feeling not to hear anything, no machines, talking, or any other distractions. Since it was a rainy day, I couldn't think of a better place to escape for silence! While having lunch I received calls from Catherine (our case manager) and Debbi (our sedation nurse angel) about Mattie's scans on Friday. Sure it is their jobs to check in on the process, but it is a comforting feeling to know they are with us during this scary time. One scan is hard enough to contend with, but Mattie has two scheduled for tomorrow, and MORE next week. So it is two weeks of torture and then additional torture with another surgery.

After lunch, I met up with Ann and we went for a pedicure. It was very nice to sit still, have my nails done (which somehow can perk you up when you are feeling not particularly happy with how you feel), and to chat with Ann. When Peter and I reflect on our blessings for this year (which are FEW), Ann is definitely at the top of your list. For several hours today I felt somewhat normal. Maybe because I wasn't in a hospital, dealing with caregiving demands, or playing non-stop. Either case, four hours away spent with a special friend was good medicine for me.

When I returned home, I found Mattie and Dan playing together, and Dan created a new character called "Mr. Hand." Mr. Hand is not unlike Mattie's character, Pinkie, who is destructive. Apparently Mr. Hand (or Dan's hand under a blanket) destroyed Mattie Land and Dan Land was completely wiped out. Mattie was very much into this play scenario, so much so that when Dan left, Mattie and I continued the play. During our play scene, Mattie's tent was a boat, and he was the captain and I was his assistant. We fought off FOUR pirates. I think we were quite successful! I hope you like the names we gave our pirate captains: Pirate Revenge, Pirate Selfish, Pirate Bad Guy, and Pirate Cry Baby! I personally loved playing Pirate Cry Baby! This poor soul cried over just about anything!

As we were playing, Peter arrived home from work and heard me sobbing, while playing Pirate Cry Baby. I am sure Mattie and I looked like quite a pair. As the evening wore on, Peter and I decided to tell Mattie about his surgery. Too many people are talking about the surgery now, and I don't want someone else to address this with Mattie before us. In fact, I had the surgeon's office call today and left a message on our answering machine about Mattie's surgery. I am sure he heard this message! I also know that the social support staff at the hospital want to start working with Mattie to prepare him for the surgery, but they have been waiting for me to make the first step. So I am happy to report that in usual Mattie fashion he took the initial news very well. Peter and I were honest. We started out by commending Mattie for the wonderful job he has done at fighting off the bone bugs. We told him that he was strong and brave and this has helped him get closer at winning the battle. However, somehow because he is so tasty, a few bone bugs escaped and landed up building a new home in his lungs. I told him that we caught this early, because the homes are VERY small, unlike what Dr. Bob had to remove from his arms. We told Mattie that there would be an incision in his chest and then with two balls of clay, I modeled the two lobes of his lungs. I showed him that small bits of clay would be removed from each of the lobes during surgery. Mattie's main concern was that all his lungs would be removed and then he wouldn't be able to breathe by himself. That seemed like an intelligent question and fear. But the clay model helped him to see that only small amounts of lung would be removed, and the rest of the lobes would remain in tact. He accepted that. We continued to talk and told him that he would have tubes coming out of his chest, similar to the tubes Dr. Bob put in his limbs during the previous two surgeries. Mattie had NO recollection of those tubes which means to me that his pain was managed fairly well, and he was knocked out for those initial days when the tubes were in. Peter and I also talked about pain and recovery time. We did not dwell on it, but wanted to get him to understand that he may not feel like himself initially. In all reality his response was a riot. He said that if there were bone bugs there, then they would have to come out. He also said that this meant he wouldn't have to do physical therapy, and he was happy about that! Unbelievable! However, I corrected that myth, and told him once he recovers physical therapy is starting up again, because he is going to walk if that is the last thing I ever accomplish!

I then started to talk about the near future for Mattie. I told him that his main goal is to get better and recover. I told him that would take most of the summer, and that toward the end of the summer and into the fall, we will be doing intensive physical therapy. I explained to him that he most likely won't be going back to school in the fall. He was actually upset by that notion. But between his lack of mobility and his compromised immunity for six months post chemotherapy, it makes no sense to send him to school. I also can't even imagine sending him to school wearing a broviac. I am sure other kids do it, but I just couldn't have a minute's peace if that happened. My goal, God willing, is to send Mattie back to school in January of 2010. So say a prayer that such a goal is even reachable.

This afternoon, we had a visit from my friend Sara. Sara dropped off a lovely dinner for us. Thank you Sara, we loved it, and I appreciate the lavender candle and your very meaningful card. After dinner, Mattie took his vitamins with ice cream and he is back on a Karo Syrup routine to address his constipation. Mattie and Peter set up a huge car track in the living room. It is simply incredible. I just finished cleaning up the living room earlier this week, and put away the huge train track and dinosaurs taking up precious real estate. But now forget it, I am back to being unable to move again in our living space. I took a picture of the two racing buddies tonight! Do you love Mattie's pink socks in the picture? Mattie refuses to wear socks and his feet were so cold today, that I took my socks off, and he did not refuse my socks. I guess because they were prewarmed for him.



As we head into Friday, Mattie and I will have to leave the house early tomorrow, so that we can go through Georgetown Hospital admissions and then check in for a bone scan and CT scans. I am very fortunate to have two people with me throughout the entire process to help both Mattie and I. Linda and Ann will be with us tomorrow, and they both know how stressful such a day is for all of us. I am grateful for their steadfast support, because sitting with someone through a scan and while you wait for the results of a scan is not for a the weak of heart, mind, or spirit.

I appreciated Lauren's (a fellow osteo mom) posting to the blog last night. This response is addressing her posting. I wanted to comment on the fact that Mattie's next surgery will be done at Georgetown University Hospital, where he received his other surgeries and chemo. Though Mattie will not be cared for by the same outstanding HEM/ONC nurses (who I absolutely LOVE!), he will be recovering in the PICU. The PICU is no stranger to us. We know many of the talented PICU nurses (who cared for Mattie through his first two massive limb salvaging surgeries), and they have observed us over the past 10 months in the PICU, for this is where Mattie also received his chemo. So in essence the staff we will be working with and the unit we will be recovering in is the SAME. In addition, the nurse manager for the PICU is also assigning us a HEM/ONC nurse in addition to a PICU nurse post lung surgery. Mainly because the HEM/ONC nurses have become part of our family, and their social and emotional presence will be extremely helpful through this recovery process. Though I hate that Mattie has cancer, I truly feel that Georgetown is making every effort to help us through the next hurdle. Also for any one who has spent a lot of time in a hospital knows, the nursing staff is crucial toward recovery. After 10 months at Georgetown, I would say that we have established a wonderful working relationship with our nurses and I am so happy we do not have to leave Georgetown at this point to learn how to operate in a new hospital system. I neither have the energy or where with all anymore to do this.

I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "No one can imagine what it is going to be like when setting off to treat a child who has cancer. I think it is much like Columbus' voyage to the new world. You set off thinking you have some idea of where and what you will find and how long it will take to get there and then discover that all of your beliefs are wrong. It isn't India, it took much longer than you expected and there were some horrible disasters along the way. That's how it seems to me; you've found some places to rest (thank goodness for friends and support staff) en route to the destination but for the most part, you spend your time on the ocean, unsure if you have the right direction mapped and not at all sure what you will find if and when you get there. This is every parent's nightmare; to put your child through incredibly painful, trying medical procedures without any guarantee of outcome and knowing that you cannot take this on yourself but that your child (much too young) has to find the stamina to face and come through it. I so much admire your steadfastness, determination and unwavering love for Mattie in the face of all this; it takes very special parents to be able to do this. I know that you are brokenhearted about Mattie's issues with the pain medications; however, all you can do right now is put this aside until after recovery from the next surgery and then find the best way to deal with it. This is not a problem that can be attacked right now and you need all your energy and efforts to go toward getting Mattie through all the pre-op tests and the surgery."

The second message is from my friend Susan S. Susan wrote, "I don't think you will ever know how much the 3 of you (or as we call y'all at our house "the holy trinity" { no insult intended religiously speaking}) have impacted so many lives in so many ways. The ripple effect of how you are living (OK existing in) your life, sends out ripples to all of us involved with you in any way. Your thoughts and actions expand outward to effect other's lives, who in turn will add to the "ripple" with their thoughts and actions. You 3 are a powerful and changing force. I don't know if you can find any comfort in this right now seeing as how you are on the brink of exhaustion, physically, mentally and emotionally. But hopefully somewhere down the road may you bask in the blessings you are allowing the rest of us to receive."

The third message if from my friend and colleague, Susan H. Susan wrote, "Just wanted you to know that I appreciated reading your article in the Advocate. After reading the blog daily since its inception, it was nice to once again be able to look at the "big picture," the summary of the past months, that you, Peter and Mattie are living. It's just unimaginable how much daily grief can fall on a family, but I am very glad that the two of you are Mattie's parents (no one could do it better) - you're doing a fantastic job of caring and advocating for Mattie, and of informing "outsiders" what this type of daily living is really like. I will reiterate what I said a few months ago - this is your current form of educating others and you are reaching thousands of "students" in the world instead of dozens in a classroom. Thanks so much for taking the time to blog - it's such valuable information, particularly for us mental health professionals as we work with others who are compromised by severe medical issues in their families."