Saturday, December 6, 2008

Saturday, December 6, 2008

Quote of the day (Thanks Mommy!): Learn from yesterday, Live for today, Hope for tomorrow. Worry looks around, sorry looks back, and Faith looks up.

As is typical with Mattie's sleeping pattern now, Mattie was up from 2am until 6am today. However, Peter and I are getting better about how to react and attack the problem medicine wise. None the less, Peter and I are wiped out. So much so, that when we mobilized this morning I told Peter I had to go home for several hours today. I needed to get out of the PICU for my mental sanity. Mind you I haven't left the hospital since I got there, last sunday! I also had to lie down for several hours undisturbed by people and sounds. I told Peter I would only do this if he promised to go home tonight. So this is our agreement. I could see that I was getting physically ill today from exhaustion, and before it got worse, I needed to take a step back.

As I reflect on yesterday, I must say that our nurses have been incredibly supportive. It seems to me that most of the folks in the PICU know about Mattie's scan results yesterday. Perhaps this isn't true, maybe I just wear it on my face, but everyone has been lovely. In the past couple of days, Mattie has had three very talented, compassionate, and amazing nurses. I feel I couldn't continue writing without acknowledging Sarah Marshall, Katie, and Kathleen. We had Sarah Marshall three days in a row this week. I really hadn't had the opportunity to work with Sarah Marshall before, but I am so happy she was assigned to us. What an wonderful nurse. She is calm, sensitive, and SO efficient. She seemed to just know what we needed, and after three days of working with us she came to say goodbye and revealed to me that she is a cancer survivor. The pieces all started to fit, based on how I experienced and felt about her. She just got it! Mattie's nurse yesterday was Katie, and Katie too did everything to make Mattie comfortable. She had her hands full with her patient load, but she too couldn't do enough. Then last night we had Kathleen. I have come to know Kathleen, and I am so impressed by her. Last night, she was an absolute angel, amazingly sensitive, and she found a way to relate and talk with Mattie. She also has a talent for coming into our room at night without making a peep! I guess I am telling you about these women because they make a very bad situation, bearable.

I am writing this blog from home, and will post it early before the day is done. Since we are going single coverage tonight, I am not sure what the night holds for me. I am hoping that Mattie had a decent day and that Peter is managing. I haven't check in on them because I wanted to make a separation, and I know Peter would call me if there was a problem. Before I left the hospital, Dr. Sydner came by to talk with us. She is a special lady, and extremely supportive. I feel she knows what we are up against, and wants to help us in any way possible. I feel that Mattie's mood is far from stabilized and Dr. Synder knows I am not comfortable going home until we get to the bottom of the issue. The problem is there are SO many confounding variables to explain Mattie's behavior. You can pick one or all of them. Chemo, living in a PICU, surgery, pain medications, trauma, and the list goes on. We are slowly trying to attack each factor and it is our hope that by monday (once the effects of chemo lighten up) we will be able to determine if Mattie's aches and pains are chemo related. Right now he screams of pain from his head to toe. I assumed this was somatic pain from anxiety and trauma. I have been so focused on this overwhelming issue this week, that at times I forget we are in the hospital for chemo! That should give you some understanding of how pronounced the emotional issues have been!

I want to thank the Lee family ahead of time for dinner tonight! Thank you for taking care of us today. I want to use the rest of tonight's posting to share some of the lovely e-mails I received today. Your words, support, and insights mean the world to me, and on TOUGH days I cling to this amazing network of love and individuals that surround us.

My cousin and Godmother, Rosalinda, wrote me a lovely e-mail today. I am sharing a part of it with you today. Rosalinda wrote, "I applaud you for being there for Mattie when he needs you. My mom read Dr. Spock's child care books, who gave advice how to raise children, when raising me.... My grandmother told my mom to throw out those books and raise me from her heart. Mattie is your child and you know best." Raising a child from the heart is the line that got me. How beautiful and how true!

Liza (a SSSAS upper school mom, and now a friend) wrote, "Now more than ever, I believe that you have to trust your gut, your maternal instincts and your heart. To hell with the rest of us - doctors, close friends, acquaintances or anyone else. None of us could possibly know what we would do if we were in your shoes but I have a good idea that I probably would be doing the same thing as you. In fact, when I am scared or in a stressful situation, like you, I shiver uncontrollably and feel like I'm going to upchuck too. So if you and Pete think, no believe, that you have to handle Mattie in a certain way then by all means, do so. If anyone questions you, tell them to see Liza May - I'm small but mighty and I'll give them a piece of my mind. My heart is broken for you and as I sit here crying, I am wondering what you really need for any of us to do. I know we bring food and gifts or toys but is there anything else you need. How else can we support you? Heck, I would stand outside your door and tell people to go away if I had to. I could guarantee that your other new friends/moms from the senior class, Tamra and Kathryn, would do the same thing too. By my calculations, it looks like Mattie will have another scan on Dec. 26th but I'm not sure what the course of treatment is for the next three weeks. I can tell you though that I requested to provide Christmas Dinner to your family so my hope is to work with you to make it special. My dear sweet, Vicki, I wish that I could give you a hug and then find a magic wand to take this away for you. I'm praying for Mattie to stabliize and for strength to help you and Pete through this."

Christine (an SSSAS parent and good friend) wrote, "I have been keeping up with you via the blog. I don't know what to say after reading your entry last night. James and I are very saddened to hear the results of the latest CT scan. Despite this, we hold out hope that it's just a small step backward in a series of bigger steps forward. I am glad that you are trusting your gut when dealing with Mattie. You went through alot together before the cancer and you certainly know him best. You are an amazing mother--never forget that and never second-guess your parenting of Mattie."

Charlie (a former student, and now a close friend) wrote, "I have no idea why I feel this way, only that this "came to me" when I lit candles and said a prayer for Mattie last night. Something said, be strong, have faith, you will know the decision to add I and E was the right one because the tumors will be gone. This made no sense to me because I did not know the results of the scan last night when I lit Shabbos candles and added my prayers for Mattie's recovery. All I knew then was that the tumors had been removed by surgery, I did not read about the scan results until this morning since the blog was not up when I turned off my computer yesterday. As for the "wants" of the medical personnel regarding Mattie using the oral anti anxiety meds; there is a reason for the saying, "people in hell want ice water", they are not necessarily going to get what they want; you know Mattie best and you have to make the decisions based on that. Things are not always great when you do follow your instincts but reading back over earlier blogs, they are almost always far worse when you don't. So do what you feel is right and don't feel guilty over what the medical folks want you to do. You make intelligent, thoughtful decisions based on both data and feelings; go with it. Sometimes the choices are not good versus bad but only bad versus awful. Sending hugs, love and purrs from the Brown-Huber household"

Jen (my dear friend from Boston, we went to graduate school together at Boston College) wrote, "I wish everyday that I could take some of your pain away and give you a break from this ordeal you are going through. The mystery of an innocent child's suffering has confounded and angered people for all human history. I think your honesty regarding this ordeal is so courageous and has amazed me everytime. The last line of your blog

"All I can say is savor your days. Enjoy the tasks, enjoy the running around, enjoy the schedules and the hectic moments. All of these things are signs of a healthy and active life. I can appreciate that more now than ever before."

This gave me such pause and shamed me for any time I have squandered in life by complaining or wishing for more. I cannot believe I have wasted even one minute, when Mattie is fighting so hard for his... I keep praying for God's gift of healing. Vicki, I have used this prayer in times of desperate need; It has helped me to endure difficult situations that seemed to have no end or hope."

Prayer to Our Mother of Perpetual Help

O Mother of Perpetual Help! With the greatest of confidence I approach you to implore your aid. You have seen the wounds of your Son and His blood shed for our salvation. You know how He desires our salvation. Because of this, I kneel before you and beseech you to obtain for me the mercy of which I stand in such great need. 0 Mary, most amiable among women, obtain the favor I seek from Jesus, the source of all good. Here, state intention. 0 Mother of Perpetual Help, you desire our salvation more than we ourselves do. Your Son has given you to be our mother, and you have chosen for yourself the name: Mother of Perpetual Help. I do not trust in my own merits, but in your powerful intercession. I trust in your goodness and in your motherly love. For the love that you have for Jesus, your Son, and my Savior, for the love of the souls faithful to you, and for the sake of your love for my soul, obtain for me all the graces and favors I ask of you. Amen.