First things first. For those of you who are looking for simple ways to make a difference, here are some things you can do.
Please take a minute to go to this website and sign the petition to get a pediatric brain cancer stamp created through the U.S. Postal Service. I think this idea is a great way to spread awareness, and really hope you might take a minute to help make this a reality.
http://www.thepetitionsite.com/petition/521710130
Also, please visit Grace's carepage. This update includes instructions on how to get pre-written letters emailed to you so you can send them on to our Congress people.
http://www.carepages.com/UpdateListing?pagenumber=2&seed=123608&ClusterNodeID=jb06&tlcx1=chp&tlcx2=1292605
Both of these things take just a minute, and could make a difference in the life of child with cancer.
Our first Smiles For Sophie Forever 5K Walk/Run meeting is still on schedule for this Wednesday April 9 at 6:30. It will be held at Swingos Grand Tavern in Avon Lake. Email Kristin at pkvaneuwen@oh.rr.com for more information. Everyone is invited, and we would be so grateful for your time and talent.
We are making progress with IRS paperwork, the race and with the website. We are hoping that the information, registration and fundraising details will be posted by the end of the week. Thank you for your patience, and for the many inquiries about the details. We know it is going to be a fun day and a great birthday party for Sophie!
Well, what can I say. It's been another month. Another month without Sophie, another month in which children have died from a DIPG and another month in which more children have been diagnosed with brain cancer.
The pain of missing Sophie still stings my heart as it did the day she died. She will not be back, I will not wake up from this nightmare; those things will not change. However, I can only hope and pray that what happens to other children and families will change. I am steadfast in my desire to do something that might help these children and families and ultimately cure this disease.
Little by little I go through Sophie's things. Today I was looking through her nightstand. I found a couple old videos she used to watch in her room. I found her "Book of Colors" that she had made in preschool, and I found the book "The Night Before Christmas." That brought back so many memories, as we read that every night during the Christmas season of 2005 and 2006. When Sophie was just two and a half, she could recite that book and tell you what was coming next. I can still hear her saying, "mama in her kerchief and I in my cap" and "tore open the shutters and threw up the sash." This past Christmas I wondered what happened to that book as I got out all the other Christmas children's books while we were decorating. So, as I miss Sophie here every day, it's those little things that hurt the most.
I have so many good memories of times with Sophie; even those memories we made after she was diagnosed. I know those months weren't spent doing what we had always envisioned, but I can distinctly remember fun times I had with Sophie and how her laugh sounded and her smile looked as the disease progressed. The picture I included was taken exactly one year ago. We were at St. Jude. Sophie was a month into radiation; hindsight tells us she was doing well, while at the time, we thought she wasn't "getting better" fast enough. She and my Mom were having a party with many of the stuffed animals that had been sent to her. When I saw this picture, I noticed her puffy steroid cheeks, but then I looked past that to the beautiful smile she had.
I always smile when I think of her smile and when I remember a funny thing she said or did, but a lot of times I have a heavy heart when I think of what she went through. The worst time for me is at night; my mind is like a song on repeat as I replay time and time again all the things that Sophie, and our family endured during her battle. The other night as I was trying to fall asleep, I started to think about what was going through Sophie's mind, as she lost all of her physical abilities which would have allowed her to do what she wanted. I was laying on my back, and I thought to myself, this is how Sophie felt. Each morning she would lay in bed next to me and wait until something told me to wake up and look at her. Sometimes it was at midnight, other times at 4:00am, 6:00am or 8:00am. I thought about all the times she woke up waiting for me to wake up, maybe because she was thirsty, or needed her position adjusted or needed a cuddle; I pray to God there were not many times that I didn't sense her being awake, because she had no way of getting my attention. I like to believe that I always "knew" when she was awake, maybe it was a faint moan or something, because I swear that every time I opened my eyes, she would reach out that left hand to me. But if there were times she woke up and I didn't, I wondered if she just felt sad and laid there until she fell back asleep.
For a second I laid in bed and imagined what it would be like to lay there, not being able to talk, or sit up, or move your right arm or leg. The feeling sent a chill through my spine as I really grasped and realized how scared Sophie must have felt at times. That scared, helpless feeling she had, day after day, is all because of a tumor called a diffuse intrinsic pontine glioma, for which there is no known cure. If you stop what you are doing for a minute and put yourself in Sophie's shoes, imagine what you would feel like if you lost the physical ability to do everything you take for granted. You would not be sitting at your computer, typing, reading, taking a sip of water, going to the bathroom, scratching an itch, or having a way of notifying somebody if you were about to throw up (and if you were like Sophie, this was a daily occurrence.) I know she will never again have to experience those feelings, and as much as my heart aches for what Sophie went through, it aches too for those children who will actually experience what Sophie did.
Having gone through this battle with Sophie, and knowing and following the battles of other children with DIPG, it's obvious to me that there are different types of DIPGs. I say this simply because of the way and speed that the tumor progresses and how the symptoms of disease progression differ from one child to the next. DIPGs are usually grouped into one category because their pathology cannot be determined without a biopsy, which cannot be done until death, due to the risks, and even after death, many parents chose not to do a biopsy anyway.
I think about Sophie's last day here on Earth. Obviously her physical condition had deteriorated, and we could have known that her days were numbered. But because she seemed to be having a few better days, we thought she would be with us a while longer.
In fact, the afternoon that she died, we went to a picnic that was hosted by some of Marc's co-workers and their families. There, Sophie rode reclined in her stroller, and although she was a little apprehensive about where we were going, she enjoyed some bites of a hot dog, hamburger, chips, and even some ginger ale. I was surprised and impressed with how she was able to chew and swallow some food, as she had been having increased difficulty doing so.
I replay that day over and over in my mind because I had a hair appointment that day. I left the picnic and Marc stayed with Sophie and Sarah, and his Aunt Margaux who had gone to help. Over and over I tell myself I wish I had stayed and spent the rest of the afternoon with her. You know what they say about hindsight. When I returned home from my appointment, Marc was cleaning up a little because Sophie had thrown up. He had bathed her, and wiped up the mess on the chair and floor, while Aunt Margaux occupied Sarah. Margaux had Sarah up on the bed with Sophie and they were being silly. Sophie was trying to hold Sarah's hand, and it's a picture I will have forever in my mind.
I curled up with Sophie for a minute, and Marc left with Sarah to go to the store to get a new computer for me because my other one had crashed. Marc also often says he never would have left if he knew what was going to unfold later that night.
As I cuddled with Sophie, she fell asleep around 6:30. I got up and got a few chores done, and would periodically go in to check on Sophie. A few times, she had her eyes open and would reach for me like she always did, and I would lay down with her until she fell back to sleep. I thought this would be another "normal" night.
Marc came back with the computer, bathed Sarah and put her to bed, and began unpacking things. Around 8:30, my friend Andrea arrived because she was planning on staying with us the next day to spend time with Sophie and help out. We talked for a while in the kitchen, and then it was time for Sophie's PER treatment. Marc said he was going to bed (it was his turn to sleep in Sophie's room, while I slept downstairs with her.) I turned on the machine and went through the treatment. Sophie didn't open her eyes, but I was not surprised because there were times before that she would not wake up for the treatment if she had been sleeping.
Andrea and I sat on the bed after the treatments and watched Sophie. Her eye began to water, and she made a few rustling sounds in her throat. I tried to wake her, but she didn't really respond. She briefly opened her eyes, and then I remember saying to Andrea, "Does she look blue to you?" She said to turn on the lights (because we only had the night light on). I ran upstairs and got Marc who flew down the stairs.
When we got back to the bedroom, it was clear that Sophie was blue, around her nose, and on her nailbeds. It took us a minute to get the oxygen machine going because we had had it for a couple months and had not had to use it. Once we figured that out, Sophie regained her color, but didn't open her eyes.
We tried to wake her, and although she never opened her eyes, she did squeeze my hand when I told her to squeeze it if she could hear me.
We called my parents in Michigan and told them how Sophie's condition had changed. They said they were getting in the car right away to head to Cleveland.
I called Megan and asked her to come look at Sophie and tell me what she thought. (We really hadn't had any "scary" times with Sophie up to this point, and were really just looking for reassurance that this was "normal.") Megan said she would come right away, and in the meantime we called hospice to come and look at her. Unfortunately, the on-call hospice nurse was at least an hour away, so we were on pins and needles waiting for a "medical" evaluation. When Megan got there, her initial thought was that Sophie "looked good." She said she thought her breathing was a little shallow, but nothing like how it gets at "the end." I was a little relieved and we just sat with Sophie still trying to rouse her.
At this time it was about 10:00pm. We rubbed Sophie's legs and hands and told her how beautiful and special she was, not knowing if this was our last chance to talk to her. We told her that it was okay to go and see Jesus, and that if she saw Him to not be afraid and that we would always be with her. We were afraid to move her because we didn't know if a change in position would cause the tumor to press on a place that would make breathing difficult. We had the oxygen going, but at one point she started to turn blue again, and then she stopped breathing. We just sort of sat there in disbelief, and then I began to panic and have the "oh no, this is NOT happening right now thoughts." Megan suggested to Marc that maybe he would want to start mouth to mouth. He did that a couple times and then she seemed okay. It amazed me how fast I settled down and went into "take care of Sophie mode" when all I really wanted to do was scream at the top of my lungs.
We talked to Sophie some more, and she began to make a few gurgling noises. We decided to use the suction and for the first time ever, the "stuff" coming up had a brown tint to it. I was frightened, although Megan said it can be like that if there is fluid in the lungs (which Sophie had not had up to that point.)
I remember really having to go to the bathroom but I was scared to leave her. I really thought I would have an accident if I didn't go, so I went, while Andrea kept yelling at me to hurry.
Right before the hospice nurse arrived a little after 11:00.pm, Sophie seemed a little better. At 11:17pm I mentioned to Marc that it was good, because we made it past 11:11. (With all the times we had been seeing 11:11, we had it in the back of our minds that would be the day or time something would happen.) She wasn't making the noises and her color was better. When the hospice nurse took Sophie's vitals, she said Sophie's pulse was not real strong and that her breathing was shallow. Soon after, Sophie starting taking these heaving breaths. I looked at the nurse with wide, scared eyes, and she said, "this is what happens at the end."
Megan encouraged me to place Sophie in my arms, even though I was afraid of hurting her or her breathing. Megan and Andrea and the hospice nurse left Marc and me alone with Sophie. Sophie continued to take a deep heaving breath (a sound I will always remember) every few seconds. Through our tears and shaky voices, we continued to hold her and tell her we love her. Marc sang his rendition of "hush little Sophie" that he had sung to her many times in her four years. I had a very hard time containing myself then, and I just prayed and prayed that she wasn't in any pain. Breath after agonizing breath, we tried to comfort her and said, "it's okay, Sophie. Mommy and Daddy are here. You'll be okay," I flash backed to all the days of doctors and nurses appointments when I told her the same things. I always felt that I was providing her with some comfort, but this time was different. I knew in my heart that the only way her suffering would be relieved, and that she would feel true comfort, was to go and be with Jesus. I told her over and over, that I would see her again, and to not be afraid. I asked her to watch over me and I think I even told her that in heaven she wouldn't have her "stupid" tumor.
As the minutes passed, the seconds between each breath became longer, and the breaths became softer. I remember thinking, "How long does this part last?" because I always thought it was a couple breaths and then no more. I was worried that Sophie was scared to "cross over" and I longed to be able to make the transition with her. We have never felt so helpless, and this day made the day of diagnosis a walk in the park. Sophie took a breath and then waited a good 10 seconds to take her last quiet Earthly breath. I was cradling Sophie like I had when she was first born when the hospice nurse came back in. She looked at Sophie and asked us if she could listen for a pulse. She did, and there was none. She declared the time of death 11:55pm October 6, 2007. (Megan later told me, that during the half hour when Sophie was struggling to breathe, she prayed to Maria, to "Come and help your friend Sophie." When we put the events in order, we realized that Megan's prayer took place minutes before Sophie left this Earth.)
At that moment, time stood still, the shock set in and I was literally in a daze. Much of what happened after that I barely remember.
I do remember trying to figure out what paperwork we needed for the biopsy. But I never left the room with Sophie. Marc held her for a while, and then people started coming. It was weird. Like when you have a baby, everyone comes to see you in bed, but this time, my baby was dead. It was odd. Marc and I desperately wanted to allow family to see Sophie one last time, but at the same time, the moment was so intimate, and one we knew we would never get back.
Fr. Tim came to the house, and he prayed with us. He shared some comforting thoughts and offered to help in any way he could. (We took him up on that, because we couldn't get the fax to go through, so he offered to go back to the church and wait for it, and then bring it back.)
Somebody asked if we wanted to wake Sarah so she could see Sophie one last time. We said, "No," knowing that we would never get her back to sleep. In that instant, we heard Sarah cry out loudly on the monitor and then go back to sleep.
Family came in crying and touching Sophie. Somebody eventually suggested that maybe Marc and I would want more time alone with her and that was nice. Sophie began to lose the color in her face, and the skin on her legs and feet became splotchy where the blood had pooled. And even though she was dead, I remember thinking how gorgeous she looked. She wasn't blue, more white, almost glowing.
We had to decide on what funeral home to call. And then they arrived in no time. And we waited, and waited for the paperwork to come through for the biopsy. Many times, when the process was taking so long, I thought about saying "forget it" but we didn't. Side note-
When we first agreed to the biopsy, I understood that a small sample wold be taken using a needle inserted at the back of her head. When I saw Sophie the first time at the funeral home, I was able to see a thick rope like stitching from ear to ear. (You really had to look close for this; not everyone could see it.) I wondered why that was there, and later learned that they had taken the entire tumor. It's pretty morbid to think of your four year old daughter's skull being opened, but when I think about it today, six months after her death, a part of me is relieved that we did get that tumor out of her head!After a few hours..it was around 3:00am. We felt that it was time to let her go. How I made that decision, I will never know, because the minute she was gone, I wanted her back. Marc carried her outside with everyone watching. I am thankful that it was the middle of the night, because it would have been quite an ordeal. I was shocked and saddened to see a hearse in my driveway. The funeral director got the stretcher out and said to lay her down when we were ready. Marc did and we tucked her all in up to her chin. It was a little chilly, and I felt strange not putting a coat on her.
The hospice nurse called Marc and me over for one last signature to authorize the biopsy, and said, "I am sorry for your loss." and then that was it.
We stood next to the stretcher and talked to her for the last time. I remember feeling like she wasn't really there in her body, yet that she was watching over us from one of the many stars in the sky that night.
Everyone was still watching us. Unless you have lost a child, you won't understand this, but Marc and I couldn't say anything to anyone. We just wanted to be alone. We didn't even know what to say to each other. I felt as though I wasn't really there, like I was watching this happen to somebody else.
My parents offered to follow the hearse down to the hospital in Akron, with my specific directions to make sure they took good care of Sophie. It was strange not going with her to the hospital, because I had taken her to every visit. I wanted to go too, but I just didn't have it in me. I don't think I watched them pull away. We went inside, and then we asked everybody to leave, except my friend Andrea because we were worried about her driving back to MI all alone at 4:00 in the morning.
When we got back inside, I immediately started cleaning. We wanted everything that had to do with this illness gone, we took all the hospice equipment and medicine out to the garage. The kitchen was messy from all the people in and out. I just felt empty and didn't know what to do. I remember picking up water bottles and wiping down the counter. I wasn't tired, I was going on adrenaline. After I did all I could find to do, I laid down in bed and cried. I cried like I never cried before. I remember thinking, "I cannot believe this just happened." I knew in my mind that Sophie had been dying since the day she was diagnosed, but something prevented me from really grasping that, as we went through all the motions of caring for her day to day.
I realize there are just some things in life we will never understand, and this whole ordeal is one of them. What I have come to understand, is that there is a lot that we all can learn from this, and a lot we can do to help those afflicted and to search for a cure.
When I went with Sarah to the cemetery yesterday, the sun was shining and there were ducks and geese in the pond. The snow had melted and I really felt a sense of comfort being there. Maybe because it was a little warmer, and I didn't worry about how freezing cold it must be six feet under. Sophie is with me every day and gives me guidance when I need it most. Not many people are as lucky as I am to have the honor of being the mother of a saint. I love you and miss you Sophie Girl!
